CHRONICLES OF A BIONIC WOMAN

Free Neckloop From Clarity If Attending HLAA Convention

2009-06-11T23:40:00.003-04:00

Why Did I Choose Advanced Bionics?

2009-06-01T14:19:00.003-04:00

I decided to do a little spring cleaning to my inbox and I noticed that my sent folder was overflowing with emails answering why I picked Advanced Bionics for my cochlear implant. It seems that after a 100 or so emails, I have unknowingly created this wonderful base for this blog. :)

There are several reasons I chose AB. I wanted to be able to hear better in noise. I wanted to be able to use the phone like a normal person. I wanted to be able to listen to music with ear buds that otherwise proved completely useless to me when I had a hearing aid – the ear was already full enough :) I wanted to be able to transition through different sound environments without fiddling around with the program. I wanted rechargeable batteries because they are safer for the environment and economically friendlier. I wanted the support that was needed that goes along with learning how to hear with a cochlear implant and because of Hearing Journey, I got answers the second I post a question. I wanted to be able to access the latest MRI technology with minimal surgery. I wanted promises of future technology designed to emulate better hearing without further surgery. I wanted total reliability. I wanted the implant to withstand sweating when I work out since I was forever killing my hearing aids. I wanted to push the envelope of hearing. When it came down to it – AB was the only company that could give me that.

1. T-Mic Microphone

The T-Mic ear hook is only available with Advanced Bionics cochlear implant system. This is not to be confused with the T-Coil, an option that can be turned on by your audiologist on your Harmony Processor. It uses the natural shape of the ear to emulate natural hearing. It helps to provide clarity that is needed for speech and is absolutely fantastic in noise because you can rotate your ears to what you want to focus on like a normal hearing person. It comes in two sizes, standard for big ears like mine and pediatric size for itty bitty ears.

Being a long term hearing aid wearer, I was familiar how directional microphones (catches the sound in front of you) and omni-directional microphones (catches the background sound) works but this design intrigued me. With the T-Mic earhook, I can just put the telephone up to my ear without fiddling with anything and the background noise immediately fades away making the your voice or the person on the other end of the phone the dominant sound . When you or the person stops talking, the background noise will become noticeable. It is the same phenomena when I wear a Bluetooth headset and stick IPOD ear buds in my ear. These are things I never thought would be possible with a hearing aid.

2. Auto Sound

The phenomenon that I was just talking about is called Auto Sound which automatically adjusts for the environment that you are in. I shall spare you the technicalities of it all. It allows you to hear whispers to shouts without flipping a switch. You don't have to fiddle around with programs. This is a cut and paste from a bilateral AB user that lives with a bilateral Freedom user that explains how useful it is to have valuable Auto Sound is.

My resident (bilateral) Freedom user having to switch for the phones, having to switch for restaurants, having to switch back for normal conversations. When we listen to music, he switches and switches programs trying to find something that sounds ok. He gets frustrated with it. If he forgets to switch back, he can spend the morning not hearing well in normal situations, with his voice louder than necessary. That is my tip off that he forgot to switch back...so I will have him check and sure enough, he forgot to switch back from whatever program he was using, back to his "everyday" program.

I would be highly agitated if I had to keep flipping programs to go from my house, to my car, to work. With Auto Sound, I hardly ever have to switch.

3. Familiarity of Hearing Aid Style

Advanced Bionics has the options of three program slots and it mimicked the style of what I was used to with my HA. Right after you get activated, you tend to play a lot with different programs options that AB has to see what suits you best but now I settled down with just one program from everything: But just for sake of having options, I have a normal everyday program, a noise/telephone program that I hardly ever use unless I am in a noisy environment and music. I find it redundant to have more than three program options because like myself, most of the CI users after they learn how to hear with the CI, you might find yourself just sticking to one. If you go to a CI clinic that gives you two processors, a primary and a back up, you can utilize both of them to play around with different settings until your brain figures out which one it likes best.

4. Widest Window of Sound (IDR)

Since a normal person ear cannot process any sound louder than 120dB and it will hurt a hearing person to hear anything louder than 120dB which results them sticking their fingers in their ears to dampen the noise. AB has its own ceiling as well. It is called IDR which stands for Input Dynamic Range that can be adjusted up to 80dB. Other companies are at 45dB. It just means that ceiling on the CI or window of sound can process up to 80dB and then Auto Sound kicks in and automatically dampens the sound to make it comfortable for us to tolerate the loud noise.

If you can picture a window shut, which means very little sound is coming through because the window absorbs most of the sound. If you open the window a little bit, you will begin to hear some noise such as leaves blowing around, cars passing or a faint impression of someone hammering. I call this a low IDR. If you open the window up halfway, you are inviting even more noise. You might get the leaves blowing, cars passing and a more distinct impression of the person hammering but you might hear the birds singing as well. If you open it up all the way, you might as well be standing outside. I like to it call it adjustable noise control. :) With a wide IDR, I can go to a concert and hear the concert as it was meant to be heard. With a narrow IDR, it gets rid of unimportant noise or what I call "white noise" and brings a sense of perceptible clarity.

5. Rechargeable Batteries

I am extremely environmentally friendly. I recycle. I drive a hybrid which resembles a hardboiled egg but you just can't beat it the 55 mpg that I get. So, rechargeable batteries are an easy "green" option. Advanced Bionics has two sizes of rechargeable batteries, extended and slim. Extended is what I have which I get an average of 24 hours out of, you figure every two days I'm slipping a new one in. I got four batteries with my processor when I was activated and I lost one (blushing) but three batteries last me the whole week. It is not only environmentally friendly, it is economically friendly as well. There are no trips to the store to buy batteries which means more money in your pocket. You might want to buy a new set of batteries every 2-3 years but if you have a durable medical rider on your insurance policy, that means very little out of pocket. AB provides a little wallet that you can attach to your key ring to carry your batteries with you.

6. HiResolution Fidelity 120 Sound Processing Option

The latest software development is the HiRes speech strategy option with Fidelity 120 options. This is an option that can help you in noisy conditions, appreciate music and on the telephone. The only way I can describe it is if I compare it to a camera. A hearing aid is a Polaroid and HiRes with Fidelity 120, it is a 4MP Camera. I can hear in noise much more easily than I could ever hear with a hearing aid. Since it was designed with music in mind, it has been a joy to actually enjoy music especially now that I am bilateral.

It uses current steering technology to increase spectral resolution from as few as 12 to 22 spectral bands to as many as 120 spectral bands. Advanced Bionics is the only company that can achieve this type of current steering technology because it has a power source each electrode. Other companies that have only one power source for all of their electrodes claim that they can steer electrodes but they have no speech strategy devised for it which makes it totally useless, doesn't it?

7. Independently Controlled Currents or Electrodes

Since I have a technical background, I have always been interested in how components function and it played a large part of my research. All the components may look similar in programming, chip size and material but the old saying, never judge a book by its cover. The HiRes 90k implant has the 16 independent computer controlled current sources where other companies have one power source. It is like if you set up X number of speakers and plug them into one outlet, you will not get the same performance if you plug in each one of those speakers to its own power supply. With independently controlled current sources, the ability for tons of future software development since it can control each electrode.

8. Internal Chip Memory

The fact that the internal chip memory is only operating at 25% capacity means that there are tons of room for development.

9. Total Reliability of Internal and External Report

Advanced Bionics has been able to issue a total reliability report. For the implant, it is at 99.5 on June 2008 and for the Harmony processor, the return rate is less than 1%. I do want to point out that you want to be worried about the reliability of both the implant and the processor because if one stops functioning, you can't hear - point blank. The other companies do not offer a reliability report on their processors because it is absolutely deplorable. I always hearing about parts breaking down and being replaced. I absolutely hated it when I was left in the dark when my hearing aid broke down and believe me, I have done my fair share of killing them. I felt so disconnected from the world as I knew it. I have yet to have my processor replaced (knock on wood) but if I ever did, I would have it within 48 hours with the Processor Direct Program.

In 2004, Advanced Bionics was under another company called Boston Scientific when they had agreements with two Vendors to supply a part for the internal component. They noticed that the rate with Vendor B component was prone to moisture issues was 1% lower than the Vendor A component. AB issued a recall on their own accord recalling the devices due to the potential presence of moisture in the internal circuitry, which can cause the device to stop functioning. Not all of the Vendor B implants had this problem. Advanced Bionics has since resolved this issue by only using parts supplied by Vendor A. As a result, their total reliability has gone way up.

10. Processor Direct Program

Processor Direct Program minimizes the time waiting if you should ever need your sound processor replaced. Just call your audiologist and they will contact AB via our secure, automated website and upload your sound processor’s unique program file. AB technicians will load your program into a replacement sound processor and ship it directly to you. Because you receive a fully functional processor preloaded with your customized program, there’s no need to schedule a programming visit. That means more time for yourself and more money in your pocket.

Processor Direct is completely safe, so there’s no risk of hearing with the wrong program. AB’s secure website makes it impossible for your audiologist to upload the wrong program file, and for additional security, AB’s patented IntelliLink™ feature will not allow a processor loaded with the wrong program to work with your implant. You enjoy peace of mind knowing you have the correct programs—developed specifically for you. An office visit to program a replacement sound processor might not be covered by insurance companies, which mean you may have to pay the cost. With Processor Direct, no programming office visit is required and that means no unexpected costs.

11. Support

Advanced Bionics has the largest online community forum – Hearing Journey with over 4,500 users. It consists of CI candidates, recipients and parents of children recently diagnosed with hearing loss, parents of children that have cochlear implant and audiologists. It is a huge wealth of information as everyone rallies around for support, offers advice, shares tips and tricks about surgery or learning how to hear with a cochlear implant. There is a CI chat held every Thursday night from 8pm EST til the cows come home, that you can come and talk to other cochlear implant recipients, candidates, parents and audiologists. Just log in to Hearing Journey and click on the chat options and you are in!

Advanced Bionic has taken it one step further to provide one-on-one support. They have just launched a new site for cochlear recipients and candidates from across the country through its new "Connect to Mentor" Web site. The new site, part of the BEA (Bionic Ear Association) Mentor Program, that I and several other bloggers are a part of, allows cochlear implant candidates to contact volunteer "mentors" and communicate directly with hearing professionals. You see my smiling face on this site as well. :)

Candidates can use the Connect to Mentor website to search for mentors who include parents of implanted children, relatives of cochlear recipients and adult recipients. Each mentor has a profile complete with a personal photo and facts such as favorite sound, interests (i.e., cell phone user, traveler, musician), hometown, age they were implanted, severity of hearing loss and how they can help cochlear implant candidates. Then, candidates can choose to "start a conversation" with the mentor directly from their profile.

Binaural HINT Scores.

2009-05-14T15:32:00.002-04:00

Hi!

The following blog is brought to you by:

Without it, there isn't anything getting done around this blog here. But through the miraculous powers of the coffee plant, I was able to devise this rather inspiring little chart of all my HINT (Hearing In Noise Test) scores.

Click here to make it bigger.

You will notice that my left ear before I was implanted was 0% across the board. This was an ear that has been unstimulated for over 15 years. I was pretty damn deaf in that ear. I can't argue with that. :)

The red column shows my progress with my left ear tested at one month post activation. I scored 44% in quiet. I was pretty elated to go from 0% to 44% in a matter of a month. I distinctly remember thinking that my brain was playing tricks on me because it was almost as though I had to learn to trust myself that I was hearing something correctly. As it would turn out, I was hearing it correctly half the time.

The lime green column is my left ear tested at five months post activation. It jumped up to 79% in quiet and 34% in quiet. I was practicing with an audiobook every single day for at least half hour to an hour. This was kind of at the point that my brain was sorting out speech in quiet and learning how to pick out what is important in noise. Baby steps!

The purple column is my left ear tested at one year. My score remained the same at 79% in quiet but my score in noise went up to an astonishing 73%. Since I scored so well with the first level of noise, my audiologist felt that I could handle the harder noise test and I scored 64%. I was downright impressed with my scores. Now, I was thinking that the benefit of a cochlear implant can really take up to a year especially on an ear that has been unstimulated for so long.

The dark blue column shows my left ear tested at one year and five months. I don't know whether I had a really good mapping at my one year appointment or my ear just blossomed but I scored 96% in quiet, 88% a little bit of noise and 84% with even more noise!

Now we are moving on to my right ear that has been stimulated all my life. the orange column shows my HINT scores when I was evaluated for a CI in May of 2007. I wish I could get my right ear tested before I had the surgery because I couldn't hear anything after I hit my head on the roller coaster. But in my total unprofessional opinion, when someone takes a loud speaker and talks to you about five feet away with a fully powered hearing aid in and you can't hear didly squat, I'm going to say my scores were next to nothing. Just saying.

The light blue column shows my right ear tested at one month post activation and it scored an AMAZING 85%! Now, it took over a year for my left ear to get up over 80%. Even with the first level of noise, I managed to hear 40%. That will get better as time goes on. Now I am totally giving credit to the substantiated claims that surgeons advice about implanting a better ear. They apparently know what they are talking about. :) It means that it is less stressful and the learning curve is much shorter. But you know me, I do nothing easy...

The mauve or dusty pink column shows them tested together. The results are nothing less them supremely impressive. I scored 97% in quiet, 85% a little bit of noise and 77% with more noise introduced.

I was so proud of the good job they did on the tests that I went right out and brought them a pair of earrings. :)

Northeast Cochlear Implant Convention 2009

2009-05-14T09:25:00.004-04:00

I will be attending the Northeast Cochlear Implant Convention 2009 on July 10 - 12, 2009 at the Sturbridge Host Hotel & Conference Center in Sturbridge, MA where none other Josh Swiller who is not only pretty easy on the eyes but the author of “The Unheard: A Memoir of Deafness and Africa.”, will be the keynote speaker.

You can take a look at the 2007 convention pictures here. I have to say from looking at the pictures, this looks like it is going to be a fun group! Children, adults and workshops - oh my!

So what is this convention about, check out this snippet below.

Dear Families and Friends,

You are warmly invited to attend the Seventh Biennial Northeast Cochlear Implant Convention, to he held July 10-12, 2009 at the Sturbridge Host Hotel in Sturbridge, MA. On-line registration or registration forms will soon be available on this site. Call 1-800-582-3232 to reserve your room at the hotel, or on-line at www.sturbridgehosthotel.com.

Nearly twelve years have passed since our first convention in Sturbridge, in 1997. In some ways, the convention is like a school reunion. Lounging around the pool or at a party in a guest room, we catch up with our friends’ changing lives: new jobs, or maybe retirement; children progressing through elementary, middle and high school, and on to college. And incidentally, how are you or your child doing with the implant? How nice to hear that things are going well!

The theme of the ’09 convention is “We Hear the World.” It is a natural evolution from the previous convention themes of “Raising the Bar,” “Enhancing Communication,” and “Technology Rocks!” In “Raising the Bar” we considered the new higher standards for classroom acoustics, the rising performance levels of cochlear implants and assistive listening devices. The theme “Enhancing Communication” reflected the many new technologies and approaches for facilitating communication access by adults and children in a wide range of situations. “Technology Rocks!” addressed the many exciting technologies and approaches that can unlock communication potential and make possible more complete and satisfying human communication in school, at work, in social settings with friends, and at home..

“We Hear the World” celebrates the many examples of cochlear implant users participating fully and independently in the world around them. The keynote speaker at our upcoming convention, Josh Swiller, will offer some thoughtful and humorous insights about hearing the world and being a part of the world. Josh spent two years living in a rural village in Zambia. That experience is recounted in his book, “The Unheard: A Memoir of Deafness and Africa.” Josh has had a “ large variety of careers, including forest ranger in the California Redwoods, sheepskin slipper craftsman and salesman, Zen monk, raw food chef, journalist, and teacher. The title of Josh’s keynote address is “We Are the World.”

Hearing the world also implies that we listen with empathy and respond to needs that we learn about. Like everyone else, cochlear implant users experience passages in their lives. High school students leave home for college. College students enter the workforce. The generation born after WWII leaves the workforce for retirement, and many of those who received the earliest implants are now golden agers. New technologies and communication approaches can ease the transition to a more mature stage of life. At the convention we will explore these transitions to the next arena of life.

See you there!

Larry Orloff, Chairperson, President, MIC and Marilyn W. Neault, Ph.D., Co-Chairperson, Children’s Hospital Boston

So go ahead and download the registration forms here and I hope to see you there!

HLAA Convention - June 18-21st

2009-04-30T18:11:00.006-04:00

Hearing Loss Association of America is holding its annual convention AND celebrating its 30th birthday in Nashville, Tennessee at the monolithic Gaylord Hotel on June 18th to the 21st. You can check out the convention registration package and rates here. Hurry though, the rooms at the hotel are at 98% capacity and registration ends on May 24th. So, break out your happy finger and click on this link for convention details.

The keynote speaker for this year is Vint Cerf, Ph.D., vice president and chief Internet evangelist for Google, and widely known as known as one of the “Fathers of the Internet." Anyone who had a hand in developing the Internet is alright in my book. He is hard of hearing and his wife is a recipient of a cochlear implant. I can't wait to hear Cerf's up!

I just so happen to have the workshop schedule here. If you take a gander, you see that Tina Childress and I will be giving a workshop called "Wireless Technology Made Simple", on Thursday, June 18th at 2:30. I'm so excited because I love bringing out the inner geek in people especially when it comes to helping them hear better with technology. :)

AND!

I am going to be representing Advanced Bionics on Bilateral Cochlear Implant panel that my buddy Wayne Roorda is hosting on Saturday, June 20th at 10:00. This panel will be made up of recipients of all brands. I encourage that if you have any questions or concerns regarding bilateral cochlear implantation and you are attending the convention, shoot an email to cipanel09@yahoo.com with your questions.

At the same time, my very best bilateral bionic belle, Jennifer and coincidentally Nashville's local HLAA Chapter President will be giving a presentation on Social Networking for Young Adults. She is just the person to give that presentation because she emanates social butterfly! On another note, please help Jennifer reach her goal for the Chattanooga Walk4Hearing on May 16th.

AND!

I will be volunteering at the Advanced Bionic booth just waiting for people to pick my geeky brain about cochlear implants and the Harmony processor.

AND!

I am HLAA's 2009 convention blogger!

I got some pretty big ears to fill here...

Your Hearing, Your Life - Free Seminar in Melville, NY

2009-04-30T18:00:00.005-04:00

I'm attending this free Seminar on May 11th, 7-9pm at the Melville Marriott Hotel in Melville, NY on candidacy and advancing technology in the treatment of hearing loss. Sponsored by Advanced Bionics.

Featuring Speakers from North Shore Medical Group, Mount Sinai School of Medicine.

Eric Smouha, M.D., ASSOCIATE PROFESSOR Otolaryngology
Karen Siegel, Audiologist
Christie Haug, Clinical Specialist Advanced Bionics
Katie Peter, Regional BEA Manager, Advanced Bionics

Space is Limited! To register for this free event please contact:

Linda Luallen at lluallen@AdvancedBionics.com
866.844.HEAR (4327)
TTY 800.678.3575

If you are unable to attend our event and would like information
about cochlear implants, contact The Bionic Ear Association at
hear@AdvancedBionics.com or call 1.866.844.HEAR (4327).

May 11, 2009 • 7:00 p.m. – 9:00 p.m.
Melville Marriott Hotel
1350 Old Walt Whitman Road • Melville, NY 11747

First Bilateral Mapping...

2009-04-12T10:23:00.002-04:00

This week has proven not be superfluous but surprisingly productive towards the end. The first couple of days, I would be sprawled out on my recliner, cupping my chin in my hand and staring into space wondering why in the HELL everything was plinking. People plinked. My dog plinked. She was plinking all over the house. I was ready to take her plinking fuzzy butt and have her deplinked. The leaves plinked. The wind plinked. My breathing plinked. Paper plinked. Staplers plinked. It was a plinkerific mess for the first couple of days.

As each new day dawned, the chipmunks have gone into hibernation and the robotic voice synthesizer has come out to play. The plinking began to lessen leading the way to the subtle phonetic nuances to enter the foreground. Of course, this wasn't entirely clear to me until I picked up the phone and heard a series of numbers correctly. First, I thought that I got them wrong but I listened with my old ear which proved me wrong. I was hearing nothing but plinking, and unknowingly I was understanding more than I thought. I took me several weeks to understand numbers with the old implant. The last time I could understand anything on my right ear on the telephone was February 22, 2007.

Naturally, my optimism levels rose. I decided to tests my brain out to see what else it was hiding from me. I had the LING sounds read to me, and I guessed all but one correctly - EEE. In the beginning I thought there was no way I could start auditory rehab with everything beeping, boinging and plinking but with my newfound discovery, I threw myself into it. My first "lesson" is Twilight by Stephanie Meyer. I downloaded the audiobook on my ipod and plugged myself in via the Direct Connect cord. I could tell that it was a woman narrating the book, but in real life I had difficulty discriminating between a male and a female. I was not expecting much - a phoneme or two, but much to my surprise I was sporadically picking up broken sentences. I was throughly confused when I closed my eyes to understand real live speech, I felt as though I wasn't picking up diddly squat. But, when I had myself plugged into the Ipod I was picking up strings of words. I've deduced that my brain is playing tricks on me.

This whole week I had the chance to adjust to HiRes - P. In the beginning, it offered me less plinking than HiRes - S. So, I stuck with P all week but on my way to my first mapping this morning, I put the ear buds from my Ipod into my ear to listen to Twilight and noticed that I was picking up a lot more road noise than I liked. I decided to cycle through the programs to see whether the other two could filter out the road noise. I was pleasantly surprised that when I used HiRes-S at how well it filtered the road noise. I was even more surprised at how well I was understanding - far superior to what HiRes-P was giving me. At the last moment, I decided on HiRes-S as my speech strategy.

As I was waiting in the waiting room, I sat a good 20 to 25 feet at a distance from this secretary who was brandishing a very shrilling piece of machinery - a stapler! I was dying listening to every time she felt the absolute need to fasten some papers together which happened to be every ten-seconds. Then my audiologist came and rescued me. First, she performed what is called a NRI test which measures the nerve response to electrical stimulation. I didn't have to do anything but sit there and look out the window watching clouds roll in. This gave us an indication of where the volume should be and it was right in the ballpark.

My main issue was the robotic voices and certain high pitched tones such as staplers, dishes, and squeaky doors, paper and numerous others were causing me to brace for the auditory attack. It doesn't hurt, but it just makes me acutely alert that they are there! So what my audiologist did was raised the volume and added some gains in the high and the lows frequencies. As I expected, we could not map out the robotic voices but we got them tamed. My brain will acclimate in the coming months. This took just a half hour, I was out the door and on my way home. Once I got home, I crashed...

Since it has been a few days, I can make an honest assessment of the mapping. My voice sounds like Darth Vader which is really testing my ability to have a conversation without laughing. I can tell the difference between a man and a woman's voice. I noticed that while I am reading along with the audiobook, the frequency that I am picking up sentences is increasing. Yesterday, I was driving with a friend in the passenger seat and I could understand him without reading his lips even when night descended. Since my first implant was on my left ear, there was always a degree of difficulty with hearing people in the passenger seat but that has become easier.

For me, this bilateral process is like waiting for a flower to bloom. I know the seed has been planted. I'm watering the seed by wearing it by itself as much as I can. I'm fertilizing it with auditory rehab. I'm providing the necessary light by venturing out into different environments. For I know that this cannot be rushed and all I can do is wait. I'm just thankful that I don't need a green thumb for this. :)

Bilateral Activation

2009-04-03T13:26:00.005-04:00

My new ear was activated yesterday and the results were very promising. When my audiologist plugged me into the computer, I could have sworn I heard something – a surge of electricity but at that point my audiologist didn’t even touch the volume control. As my audiologist gradually turned up the volume, I watched her lips emit an artificially high-pitched voice. When the volume reached a tolerable level, I actually HEARD but I didn’t understand her talk where with my first ear; I wasn’t blessed hearing any type of vernacular. Naturally, my response was giddy since she talked like a chipmunk. :) It was difficult to keep a straight face while trying to effectively describe what I was hearing.

Once we fiddled around with the new ear, they decided to throw the old one back on to see whether I have a sense of balance auditory wise. I immediately had to turn the volume down on the old one. I could tell that I was hearing in stereo because the auditory input in each ear was dramatically different. My old ear was well, my old ear. My new ear was beeps, bongs, whistles. After a few minutes, my old ear decided to become the dominant ear. Once it did that, it somewhat canceled out some of the beeps, bongs and whistles.

No one took pity on the deaf girl because they started ripping paper, banging on the table and tapping their nails. The entire activation took less than an hour. My audiologist didn’t have to explain anything to me since I am a seasoned pro with the implant business. :) Since I went through this process already, I was very conservative volume wise. With my first ear, it was my initial instinct to amp up the volume because that is how you hear with a hearing aid. This time around, since I know what I know now, I know that you can’t rush it. Your brain will tell you what it wants, when it wants it. I was fitted with a Hi-Res Paired program with Fidelity 120, Hi-Res Sequential program with Fidelity 120 and a Hi-Res Paired noise program with Fidelity 120. I get to cycle through each one for several hours to see which one I prefer. My audiologist strongly suggested that I leave my old one off as much as possible to give my new ear some time to play catch up. Joy. :)

After activation, I walked out of the hospital with my slot firmly in position for Hi-Res Paired program with Fidelity 120 and unknowingly walked into the world according to Super Mario brothers. All sorts of beeps, buzzing, and bongs just pulsing away in my head. It sounds all futuristic but emanates the past of the arcade games from the 80’s.

Just driving home was a trip having the wonderfully iconic BOING of Super Mario powering up as I drove over every bump on the road. The only thing that really stood out is when I yawned a good healthy yawn – it sounded like a very horny orca performing their mating call. Feel free to YouTube that. I had noticed that I was unable to hear my blackberry chirp or croak when someone sent me a message. A few hours later, I could hear it. When I first got home, I couldn’t hear my dog’s toenails click clack against the floor. A few hours later, I could. I must have walked her up and down my 15 foot hallway about twenty times to hear it. I’m sure she thought I had gotten lost in my own house. :) I can tell when someone really has a good laugh. That is probably the only thing that I can pick out right now. BUT, I did pick up that there were some drums playing on the television.

I learned a little something about bilateral mappings – it wears you out. I mean my mappings for just one were a bit tiring but two – Oy! I’m not a napper by any means because I’ll sleep when I’m dead. But I buckled under pressure and took a twenty minute snooze.

This morning I decided to give Hi-Res Sequential program with Fidelity 120 a whirl – at work. I am sitting here with my hair down cleverly disguising two cochlear implants - the new one attached and the old one with the coil hanging just in case I need to use the telephone. it looks like a very ugly earring. Instead of listening to the world dictated by Super Mario Brothers, I am on the Galactic Republic listening to the auroral radio chatter of R2D2. When someone talks, it is as if R2D2 has a hyperactivity disorder – different beeps, bloops, and whistles randomly and furiously. And I am supposed to figure those out. :) I am listening to rain and it sounds like when Sonic the Hedgehog is collecting a whole mess of rings. When I walk down the hallway with my heels, I feel as I am walking with the weight of an elephant because it is very loud.

All in all, I am thrusting myself into the noisy world starting from scratch – hearing everything for the first time – again. I forgot how much I loved this process. :) Everything that I am hearing, coincides with a sound immediately. That pleases me. The toughest part about this for me is leaving my old ear off but I will remain diligent. My next mapping is next Friday on April 10th and that is when the real fun begins. For now, R2D2 and I are going to be buddies for the next week.

Recovery From Going Bilateral...

2009-03-26T11:18:00.001-04:00

I have been awful about updating my blog but I'm a busy bilateral bee. I got my stitches taken out on Saint Patty’s Day at some gosh awful time of 7:45 in the morning. The doctor said everything looks great. As I mentioned in my other post that when I was in the recovery room, the doctor said something about a hole in my head but I was a little preoccupied with organizing a manhunt for my Blackberry to care about a little hole in my head. I was concerned about it later on.

As I was getting the stitches ripped out of my head, the subject of the hole happened to come up. The area where the surgeon wanted to create a bed to put my implant in was thin and in doing so small part of the Dura Mater which is the covering of the brain had a hole in it and some cerebrospinal fluid leaked out. The surgeon had to patch that up. It is a similar to when they implant a baby because their skull is thin and pliable. First, I was a little freaked out because I was envisioning this implant sitting right on top of my brain but it is actually sitting on mostly skull except for a small portion of Dura Mater. That makes me feel a little better. I had to ask if I had to take any extra caution in activities and he told me to use common sense - right.

After the question and answer session with my surgeon, I preceded right back home to take a much needed shower. I admit that with this surgery, I was not as strict with the doctor’s orders as I was the last time. Day three, I decided to throw caution to the wind and slather the incision up with Neosporin and hire a cheap shampoo girl (Mom) to wash my hair. Afterwards, I dried the incision thoroughly with Hydrogen Peroxide and applied a layer of Neosporin. I guess I should put a half hearted disclaimer here: If this influences you to blatantly disregard your doctor’s orders, I am or this blog in no way shape or form responsible for your actions.

Now with the legalities out of the way, I wanted to create a post specifically to compare and contrast my left ear which was my first implant and my right ear which is the newest addition to magnetville. I revisited my surgery posts for my left ear. A wave of nostalgia came over me but I'm over it already. :)

Here goes.

Recovery room:

LEFT: When I woke up in the recovery room, I was in a good amount of pain. I felt as if my head got ran over by a Mack truck. The nurses were quick to shoot my IV up with some pain relievers. God bless them. It took a little while to come around from the anesthesia. I was under for three and half hours because my doctor had some issues getting the last electrode in but finally got the bugger in.

RIGHT: This time, I woke up with very little pain. I was able to wake up quicker since my surgery was only two and half hours. I was up and around within a half hour. The surgeon had no problem getting all the electrodes and the only issue were the leaking brain juice.

Sleeping:

LEFT: I parked my big ol’ butt on a recliner for a week. There was no way, no how I could lie down. When I tried to lay flat in my bed, I experienced the sensation of a spinning vortex. So the recliner it was for me.

RIGHT: The first night, I slept on an incline but by morning, I was sleeping flat on my back on a pillow and have continued to do so.

Pain pills:

LEFT: I was given the generic form of Vicodin that I was instructed to take two every four hours as needed. Well, I needed the whole damn bottle because I felt as if I got into a car accident with the aches and pains. I was a pill popping freak with this surgery.

RIGHT: This time around, I got the good stuff - Percoset which did the trick beautifully. Strictly for pain management - one in the morning and one at night for five days then I switched over to Tylenol gelcaps. One bad side effect of Percoset is constipation so try to increase your daily intake of fiber while popping the perks. :) Words of wisdom.

Metallic Taste Disturbance:

LEFT: I didn't get this side effect the first time and anytime I read that someone suffered from it, my reaction was always the same - dude, that sucks.

RIGHT: What goes around, comes around and it rolled around on day four, I went to take a sip of coffee that I had slumberly prepared that morning and as it coated my taste buds, a distinct copper flavor was detected in the right hemisphere of my tongue. Much to my dismay, I went on a coffee hiatus. It took about a week and a half for that to go away and for that next week and half, I found out what the headless horseman felt like but I lost four pounds. :)

Day of Doom: Day Three

LEFT: When day three rolled around, I was feeling pretty crappy.

RIGHT: When day three rolled around, I was feeling so good that I went back to work on day four which I will now admit was a very stupid move because I was so drained just sitting there. I resumed my right to recovery at home on day five with all the Food Network I could watch.

Dizziness:

LEFT: The only time that I experienced dizziness was when I laid down and I tried very hard not to do that!

RIGHT: Nothing at all :)

Fullness:

LEFT: I remember getting the cotton ball feeling with this ear for about two weeks.

RIGHT: The only time I experience the sensation of fullness is when I bend over.

Jaw pain:

LEFT: My jaw was tender but I could eat a hamburger without cringing in pain.

RIGHT: This time around was ouch. the jaw tenderness was bumped up a couple of notches. I couldn't yawn without flinching. Since opening my jaw anymore than an inch caused me to wince in pain, food preparation was a fiasco. Everything had to be in extra small bites.

Swelling:

LEFT: It was the fattest ear that I have ever seen in my life.

RIGHT: If I had any swelling, I couldn't tell and neither could anyone else. By the third day, curiosity got the best of me because I wanted to see whether the magnet from my processor could find the implant. It had no problem attaching itself.

Numbness:

LEFT: The top of my ear felt as if it had been anesthetized for three months. It took about three months for me to get feeling back into my ear. I could not sleep on for three weeks. In fact, the day of my activation was the day I was able to sleep on it.

RIGHT: Considering that I am two and half weeks post surgery, it is still numb but I can sleep on it now!

Tinnitus:

LEFT: Before the surgery, I had a major case of tinnitus that sounded like a train going around my head. After the surgery, I woke up to complete quiet. It was so pleasant to have that turned off. :) I did experience short episodes of tinnitus but after activation, it was gone.

RIGHT: I had some minor tinnitus before the surgery. After the surgery, it was like a different album was playing. Now, I don't hear much of anything except on occasions. I expect it to be less than noticeable when I get turned on.

Nose blowing.

LEFT: I don't even want to recount the anguish I went through when I just attempted to blow my nose with this surgery. I was truly paralyzed in pain.

RIGHT: Considering the painful experience I had with the left ear, I didn't want to take any chances. I decided to follow doctors orders on this and wait the two weeks before I attempt to blow my nose. The result was snot and a slight ear pop. :)

Neck stiffness:

LEFT: My neck was a little stiff but not near as stiff as the right ear.

RIGHT: My neck was stiff for about two weeks until I could move my neck side to side with no problems.

Bruising:

LEFT: I looked like I got kicked in the side of the face by a mule. It wasn't pretty.

RIGHT: I think I had a slight discoloration on my temple. Other then that, I looked good.

Tiredness

LEFT: I was popping so many pills that knocked me out that I was having cat naps every two hours.

RIGHT: I was tired but not to the state of nap time. :)

Driving:

LEFT: I didn't dare to drive until the sixth day. I cherished the fact that I had a driver license.

RIGHT: I was driving by day three despite the stiffness I had in my neck.

In conclusion, my right ear surgery and recovery went much smoother then the first one. It was so drastically different. Here I am two and half weeks post surgery and I am back to work full time. I went back to the gym doing light work outs. My incision is healing quite nicely. It really has been a super simple recovery. My activation is a week from today - April 2nd at 2pm.

The only gripe I have about this surgery is finding out that I am not as thick headed as I thought I was.

Order the Charity Book "I Don't Believe My Ears" Today!

2009-03-25T08:35:00.006-04:00

The charity book project, I Don’t Believe My Ears, is finally completed after several months of assembling it together. Val Blakely from Cochlear Kids and Rachel Chaikof from Cochlear Implant Online would very much like to thank all these contributors who submitted wonderful and humorous stories:

Me :) at Chronicles of a Bionic Woman
Amy Kwilinski at CochlearImplant.net and Auditory Verbal Parents
Ann Lovell
Beverly Spenser
Diane Beltrami
Jodi Cutler Del Dottore at An American Mom in Tuscany
Kara Hendrick
Kim Larsen at The ASL-Cochlear Implant Community
Kimberly Pendley at Can you hear me?
Leaf Leafler at Say What?
Leslie Hine at The Hine Family Est. 1996
Liz Hupp
Melissa Chaikof at Auditory Verbal Parents and Cochlear Implant Online
Melissa Krilosky at Our Journey to the Hearing World
Samantha Trueblood
Val Blakely at Cochlear Kids
Vicki

All proceeds will go to Deafness Research Foundation, a non-profit organization 501(c)(3) that works to fund research to help those living with hearing loss and balance disorders, and on programs to raise awareness of potential causes to protect those at risk.

Go order one today and help create a difference for today’s generation and the future generation of deaf people and have some good laughs!

Officially Bilateral!!!

2009-03-12T13:08:00.010-04:00

Today is day four of my recovery from my second cochlear implant and you will never guess where I am - I’m sitting at my desk at work, sipping on a cup of copper flavored coffee skillfully prepared by the professional coffee artisan across the street. I’m visually picturing you – my loyal readers – jaws dropping right about now.

But I am not kidding you.

I have been totally unenthusiastic about going bilateral even though I have a swarm of bilateral buddies swearing up and down that two is better then one. I would just nod in agreement just to hush them up. When I had my first cochlear implant surgery, I felt a sense of urgency to get it done. It was either to remain deaf or given the possibility to hear and I chose the latter. I had a rocky recovery with my first cochlear implant surgery and I was hesitant going through the whole ordeal again though I know the benefits far outweigh a few days of feeling as if I got ran over by a train. With that in the back of my mind, I had no immediate desire to go freely jumping on the bilateral bandwagon. But then you read studies like these:

Bilateral cochlear implants: A case when 2 are definitely superior to 1

Adult Bilateral Study PDF

And ponder if it is really worth it? But then, what did I have to lose? So I finally got a surgery date of March 9th and insurance approval for going bilateral a week before going under the knife.

On Monday, I had to report to a different building then my first surgery. It was a happy building - lots of shiny stuff that caught my eye. The sage green aesthetic calmed the most neurotic of patients. I had to be there around 9:30 and I was a little late, of course, but they still took me in anyway. They slapped the identification bracelets on me and made me get undressed. They let me keep my skivvies on because last time they demanded them off which is a bit embarrassing. :)

Just like last time, I gave the nurse one chance to get the IV in. I start practicing my lamaze breathing and pop she got it in on the first try. She decided to put the IV in my arm as opposed to my hands which has some thin veins. I had a horrific experiences where a nurse tried six times to put an IV in my hand. I ended up passing out and was put on oxygen. Hence the reason I have a rule in place, one shot and that it is.

Then the gas man with this unbearable accent came strolling in my little curtained in area. I get nauseous with anesthesia so I asked him to put some extra anti-nausea stuff in with my cocktail. However, I had such a hard time understanding him. He was Indian with a heavy British accent that had no desire to move his lips to enunciate. He just gave up with me and carried on talking to my friend as if they were a bunch of little old ladies about smart phones. After he left, I bawled out of sheer frustration. My favorite bilateral bionic babe, Jennifer managed to get my tears down to a mild drip just in time for my surgeon came in. He recapped the procedure as he marked my ear lobe with a teeny tiny X.

Shave some hair. Slice the ear open. Drill a well. Drill a hole. Slip the implant in there. Boot it up. Stitch me up and ship me home.

Super simple stuff – really.

Just before noon, they got smart and sent a native English speaking member of the anesthesiologist team this time to wheel me back to the OR. They were so kind to let my implant come along for the ride. It was similar to playing bumper cars on the way there. The chairs that they use don’t exactly go around curves well. With some narrow hit and misses, I hopped up on the table.

Then the gas mask came out. The last time they used the mask, I actually tried to rip it out because I felt as if I were making a mistake getting the implant. Silly me. This time, I felt at peace and drifted off.

The surgeon got all 16 electrodes in and stitched up by 2:30. I was told that the area where he wanted to place the implant was a little thin and that there was a hole already there (scratching head) but he spackled it. I will find out more about that hole that was in my head when I see him on March 17th to have the stitches removed. I woke up in recovery around four o’clock and it was worlds apart how I woke up the first time. I felt dopey as all hell. With the first surgery, I felt like a mack truck ran over my head and a bit dizzy. With this surgery, I didn’t feel any pain, pressure, dizziness or taste of metal. I hardly noticed the traditional turban but I was able to wear the cochlear implant over it.

Within a half hour, I was up and using the lavatory all by myself. I was drinking water and questioning on the ETA of my applesauce. They decided to inject some pretty potent pain medication in my IV which made everything wrong seem right in the world. They kicked me out of the hospital around five o’clock.

When we got home, I walked into Walgreens and drop my prescription off. After that, I plopped on the couch and got the royal treatment for the rest of the night. I mean - homemade spaghetti and meatballs with warm apple pie! You can’t go wrong with that! With my first one, I had no problem eating but I did have a problem with sleeping. I slept in a recliner to keep my head elevated but with this ear, I slept flat on my back.

The next day, the sadistic piece of gauze that was wrapped around my head a few hundred times came off. I was pleasantly surprised. I think my tears worked on my surgeon because he did not shave off nearly as much hair as he did before. Notice my picture of my first ear incision compared to my second ear.

Another pleasant surprise was that I got the good happy pills this time and not the generic version of Vicodin. I got some pretty white round pills of Oxycodone. With my last surgery, I was popping the two Vicodin every for hours. I take maybe one every 8 hours.

Yesterday was the dreaded day three of the recovery process. It is usually the day that most people feel really crappy. With my first ear, I felt horrible from day three to five but I felt disgustingly good. I have virtually no swelling whereas the last time my ear needed liposuction. It was gross. I woke up and started cleaning. I went for a drive and did a little grocery shopping. Just out of curiosity last night, I decided to dangle my magnet and see if it would attach itself and sure enough, it attached. That oughta tell you how much swelling I have. This recovery process is just so hard on me... :)

And today, I woke up with a slight metallic disturbance amidst my taste buds. This is new but it is not uncommon. I didn't have this with my first implant. It is pretty annoying and I find that really sugary substances like grapefruit and apples - do not taste good. Other then that, I'm feeling peachy...

Activation is on April 2nd!

Bilateral Surgery Date...

2009-03-01T23:00:00.003-05:00

I know it has been a while since I have brought good tidings to my blog. I have been poked, prodded and even had a sheep thrown at me as means to inquire into my whereabouts. The sheep did me in. But first, I like to take the time to thank the highly anticipated gazillion snowflakes that I will have to shovel and then risk life and limb to drive to work tomorrow for the time to sit and down and update this blog.

The breaking news that I have is that in a week on March 9th, I'm going bilateral. That's right folks, I am going under the drill again and getting my right ear implanted.

The countdown begins now.

Music Video Featuring Sign Language

2009-01-04T11:32:00.004-05:00

Every morning before I begin to assemble myself, I read Perez Hilton as well as CNN news. I happened to notice that the Perez posted a video by an Aussie pop singer named Sia who uses Sign Language in her latest video, "Soon We'll Be Found". I fell in love with the song, the video, the psychedelic utopia of trippy colors and decided to caption it.

If you cannot view the video, click here.

Why did she choose to sign in her video?

"Sia decided to sign as well as sing the song, in honor of the language and those who use it to communicate. “I've always been obsessed with the beauty of sign language,” Sia explains. “To ignorant hearing me, the movement and expression appears as a dance -- a beautiful, emotive dance. But the real beauty is the communication hidden within these perfect shapes.”"

But I can't tell what the hell is being said after 3:30 seconds. I think it is vocalizations with her repeating "I know we're lost but soon we'll be found". So if anyone with better ears then mine, not an impossible feat might I add :) could take a listen to the video and figure it out for me, that would be absolutely superb :)

Update on the MRI Mix Up

2009-01-02T21:34:00.003-05:00

Last year is now a form of the yesterday.

This year is now a form of tomorrow.

And with this new tomorrow, delivers answers that yesterday couldn’t provide.

Deep, right?

:)

Seriously, with the new year, comes new answers. The short version is that I do have Enlarged Vestibular Aqueduct Syndrome (EVAS) as confirmed by the CT Scan. If you have absolutely no idea what I am talking about, a nimble little summarization of my last post:

None of the medical quacks I have seen in the past have managed to figure out exactly WHY I am the way I am - deaf and the only one in the family too.

Fast forward to twenty-four years later, my cochlear implant surgeon discovers that I have an Enlarged Vestibular Aqueduct on the CT scan or MRI film. Uncertain which one he had used to diagnose EVAS but I was happier than a pig in poop that I had an answer. In my eyes or ears, depending on what orifice you want to use, it was the golden grail of my deafness. My surgeon kept the CT scan films because that is what he is going as a guide to implant my other ear and sends me home with the MRI films.

Seven hours later around eight o'clock at night, I was sitting in my favorite chair with my dog asleep at my heels dreaming of the freshly baked carob chip cookies and peanut butter barkcuits, I just happen to be nosing around in the envelope containing the MRI films and discovered that most of the films don’t belong to me.

In my appalled state, my findings immediately tainted the doctor’s diagnosis because I was unsure what films he used – the CT scans or the MRI films. My dog woke up at this point.

Before my eyes glazed over in premenstrual madness, I could see that the information on the MRI films gave me the name of the facility, the patients name, date of birth and the date the tests were done. Very convenient. The date matched the date that I had my tests done. So, the radiology facility that I had the tests done at had given me the wrong MRI films!.

I've been quite the busy little bionic bee trying to get to the bottom of this but because of the holidays, it has been a slow crawl. Note to you all, just in the case where you feel the desire to go snooping around around your medical files, do it during normal business hours. It will save you much grief. But with just a couple of emails, I could confirm that my surgeon used the CT scan films to determine that I have EVAS. Whew! To alleviate any doubt, I had them double check to verify that all my CT scans belong to me.

This brings me to shifting my focus on the facility where I had my CT scan and MRI done. I shall return the MRI films that do NOT belong to me but I just want the radiology facility to provide me with a copy of my MRI films which they are giving me a little issue. I’m in duel mode right now for that. I want them to reread my films because this mix up has created a little thundercloud of doubt about the authenticity of the MRI report.

In the grand scheme of whole medical screw up, it was most likely a very honest mistake that I ended up with someone elses MRI films. It happens and no one got hurt, thankfully. Logically, I would have liked SOMEONE to have caught this instead of me discovering it over a year and half later.

But back to the fact that I have an answer which is all I ever wanted. My mother always had it in the back of her mind that maybe it was the antibiotics she took when she was pregnant with me when she had pneumonia. Ototoxicity is a real issue, so it was plausible. My father always had it in the back of his mind that maybe the piece of meat I swiped off the counter that caused E. coli that could have caused it. I had a high fever with that, so that could have killed my hearing. I always wondered which one of my many childhood illnesses that I had could have caused it. I mean I was anemic, I had blood transfusions, I had my tonsils ripped out along with my adenoids. I was a sniveling mess of a child with a very lengthy hearing history.

It is a huge relief to know it was something that I was born with and it was inevitable that I would become profoundly deaf. It was all me and it was meant to be.

Finally, an Answer to Why I'm Deaf or a Total Medical Screw Up!?

2008-12-23T23:21:00.009-05:00

I took a trip out to University of Pennsylvania Hospital today with my CT Scan and MRI results in tow to start the process to have my right ear implanted. My right ear was a candidate last year but I still have to go through the whole process again minus all the tests. I don't have to redo the CT Scan, MRI or the balance tests. I don't need to have any audiological testing done because it's not as though my ears have gotten better :) In fact, my right ear, the one I wear a hearing aid in has finally gone kaput. I might as well should put it to good use! I am still a candidate and I don't have a surgery date yet because there is an issue with my oh-so-wonderful-union-backed-health-insurance canceling the contract with the hospital and they want to assure they get approval so I am not stuck with a hundred twenty-thousand dollar bill. And quite frankly, I want assurance that I am not going to get stuck with a hundred twenty-thousand dollar bill too. But that is another blog entirely.

When I saw the doctor, he came in and sat on the chair. He leaned back and crossed his legs, interlocked his fingers and rested them gingerly on his lap while he gave me the best present that I could have asked for: the answer to the age-old question of why I am deaf since no one seems to know why I have a hearing loss since I am the only one on both sides of the family that is deaf.

"Abbie, you have what is called Enlarged Vestibular Aqueduct." He says.

"En-larged Ves-ti-bul-ar Aq-ue-duct." I repeated after him, syllable by syllable.

I presumed to steam roll him with questions. With the recent advancement of MRI technology, it has made it much easier to diagnosis this. A CT Scan can appear normal but with an MRI you can actually see the enlarged duct and sac. He explained to me that I was born with it. Most children that are born with this don't lose their hearing until three or four years old since this is when the Vestibular Aqueduct reaches its normal adult size. Figures, I would have something enlarged in my ears. My ass is enlarged. My chest is enlarged. So why not my something in my ears! The second I left, I was determined to become a self proclaimed expert via the way of the Blackberry of this Enlarged Vestibular Aqueduct Syndrome. And everything that I have read so far, fits perfectly. From the reason I feel as if I have fluid in my ears after I get my head jarred to the sudden deafness to the progressive hearing loss and how the one side worse than the other. It fits. This will be a separate blog too. I know, I know, what is the point of this blog you ask? Just hold on to your candy canes, I'm getting there.

My answer to my deafness has long be undetermined but I finally have an answer or so I thought.

Since I was stuck in traffic for a greater part of the day, I spent much of my time on my blackberry reading about this Enlarged Vestibular Aqueduct Syndrome. This shouldn't surprise you because when I get interested something, I research it to the death. But anyway, I finally got home from finishing up some Christmas shopping. I decided in all my professional incapacity to take a look at my MRI results. I never took a look at them before so I figured why the heck not!

I cracked open the huge Manila envelope and as I removed the MRI sheets as if they were made of glass. There was a ton of them! I carefully pick one up and hold one up to the light and started to admire each of the images on the film. I couldn't help but think they look like a very boring black and white Andy Warhol painting. They were arranged four across and five down: 20 images total on a single sheet of film. Like this:

I had no idea what I was looking at but I just so happened to take notice of a name at the upper right corner of each tile - a Wayne Something. Note: I changed the name to respect this person privacy.

First I thought it was the name of the person who performed the test or the name of the radiologists but I read further: Pat.: Wayne Something born in 1952.

Ok. That means patient.

I picked up another sheet of film. Wayne Something.

I picked up another one and sure enough, Wayne Something again!

And another one, Wayne Something.

I'm sensing a pattern here.

Yet another sheet, WAYNE SOMETHING

Picked up another sheet and saw a familiar name, MINE!

All in all, a total of four sheets belong to me.

All twenty other sheets belonged to Wayne Something born in 1952!

Ok. I thought maybe the hospital might have incidentally given me back someone else films but I checked out the date that Wayne Something born in 1952 had his MRI done. It matched the same date that I had mine done.

I’m attempting to think logically here because I am so frigging furious and I am pms'ing and all the dark chocolate in the world isn't calming me down. The answer that my entire family and I have all been waiting for was just handed to me on a silver platter and NOW, the possibility that the diagnosis was based on WaynE Something born in 1952 films and not my four friggen MRI films.

DO I LOOK LIKE A FIFTY YEAR OLD MAN TO ANY OF YOU?!

No, I didn't think so either. My so-called logical thinking has lead me to conclude that when I went to pick up my MRI films, they gave me Wayne's films and I never had a full set of MRI films to begin with.

What is really upsetting me is what if the doctor based his diagnosis of having Enlarged Vestibular Aqueduct Syndrome on HIS sheets and over looked the name?

That means I am back to square one without an answer to why I am deaf.

The hell I'm going back to square one without a fight. First thing tomorrow morning, I'm calling the MRI place, calmly, and tell them what happened and politely request (demand) that I get my full copy of my MRI results. I am sincerely hoping that they still have a copy of my MRI films because this is dating as back to early 2007. I will request the radiologist to measure the size of my vestibular aqueducts to see whether the doctor diagnosis is correct.

I practically screamed my friends ear off on the phone tonight reciting this entire SCREW UP to her and I decided it was time to give her a word in edgewise because I puffed out all the oxygen in my lungs. First thing she does, is her worst impression of Barry White singing,

"Happy Holidays!"

Stay tuned folks and have a great holiday! :)

MRIs and Cochlear Implants

2008-12-03T21:57:00.009-05:00

Let's talk MRIs.

When I went to Chicago for the ALDA convention, I met several people that didn't want to get a cochlear implant because they need an MRI every six months. I will admit when I first started researching cochlear implants, MRIs was not a major concern of mine. I just read the I can have a MRI done if the magnet was removed. Fine. Great! That is all I needed to know but now I realize how much it means to others that suffer from other illnesses where they require MRIs.

Why would a person need to get one? MRIs provide better contrast in soft tissue, which helps to distinguish between normal and diseased tissue. MRIs do not show bones like a CAT scan or X-Ray. Brain tumors, strokes, multiple sclerosis and Neurofibromatosis, type 2 (NF2), are diagnosed by an MRI. Which means anything metal - paper clips, pens, keys, jewelry, scissors, underwire in your bra, belts, glasses and any other small objects can be pulled out of pockets and off the body or out of the body can become dangerous projectiles hurdling at the opening of the tube at incredibly high speeds.

Joy. Its a good thing that they make you remove anything metal.

Could you imagine if someone left a tongue piercing in and they turned the MRI machine on? Ouch.

Anyway, I did me a little research on MRIs. The magnet in an MRI system is rated using a unit of measure known as a Tesla and they are grouped into three fields.

Low-Field = Under .2 Tesla

Mid-Field = .2 to 0.6 Tesla

High-Field = 1.0 to 1.5 Tesla

What is the difference between low-field and high-field? The high-field setup has superior image quality AND has a higher rate of detecting tumor remnants. This abstract that I found supports that statement. The next generation of MRIs are circulating around at the strength of 3.0 Tesla.

Sounds like the higher the Tesla - the better the detection rate. I would imagine it would be like going from a two mega pixel camera to a ten mega pixel camera.

Now both Advanced Bionics, HiResolution Bionic Ear System's HiRes 90K implant and Cochlear Americas, Nucleus Freedom is MRI Safe up to 1.5 Tesla with the internal magnet removed.

I took a look at Med-El's website and discovered in bold letters, MRI Safe - Without Magnet Removal. Leaping lizards, no faking! They don't require the internal magnet to be removed. In fact, it is designed where the magnet can't be removed at all.

That cool!

But then I read the fine print:

In the US, PULSARCI100 and SONATATI100 are currently approved for use at a scanner strength of 0.2 Tesla.

Oh. That means recipients of a Med-El device can only use MRI's rated at low-field strength of 0.2 Tesla where they could be sacrificing image quality that could lead to a potential misdiagnoses.

What if one with a Med-EL device wants a high-field MRI that has a better image quality and higher rate of detection? Does that mean the entire implant has to be removed because they don't have a removable magnet?

Yikes.

This is a link to an article that talks about the latest MRI machines that are rated 3.0 Tesla which can demagnetize an implant. It also discusses how there is permanent damage to devices with non-removable magnets such as Med-El's PULSARCI100 and SONATATI100.

However, I'm privileged to know someone in my harem of cochlear implant users that had an MRI done and had the internal magnet removed and what he had to say really calmed my nerves if I ever had to get one.

First of all, it seems to be kind of a rare event. My surgeon has performed over 550 implant surgeries and has never had to do this procedure (taking the internal magnets out, then reinserting new magnets). In fact, of the 700+ Midwest Ear Institute patients, I believe I am the first to have an MRI. To get an MRI, the internal magnets need to be removed from the implant, then you get in the tube, then back to the OR to have new, sterile magnets and stitched up. The thought of having the internal magnets taken out probably bothers some people but it shouldn't - it was not a big deal at all. In fact, they asked if I wanted to be sedated and I said no - so they just did a local and it was fine. There is a little pain...but very little, and easily handled with OTC pain relievers. In fact, I haven't needed any today at all. I was going to write a great, detailed account of this but it is such a non-event that there is little to write. Kind of like getting some stitches in your head - that's it. The most irritating thing is being inside the MRI tube - at least you can't hear it though, because you are completely deaf while inside.

I wouldn't go get an MRI for fun, but if it is suggested that you need one, please do not hesitate to do it. An MRI is an incredible piece of technology and can be a difference maker in terms of diagnosing certain things.

And that is all he said folks!

ALDA Highlights - Karaoke Party

2008-11-20T19:24:00.008-05:00

Time is just seeping into unknown crevices and leaving me with little or no time to do much of anything. Priorities are rearranged and some of them are put on the back burner like this blog. It has been a month to the day that marked the end of the ALDA Convention and I wanted to share some highlights that everyone wants to know about - the Karaoke Party.

But first, a little history on the Karaoke Party. Since most of us are deaf, we can't really follow along with the words of the music nor can we keep a tune. What they do is they put the words to the song on a big screen so everyone can read them and they pass out balloons to feel the music. The balloons are far more sensitive to vibrations and far more reliable then using a table or our feet to feel the beats. How did this traditional use of balloons start? It started when a member went over to the next banquet room where they were having a wedding and he kind of, sort of - borrowed some balloons. The bride even joined them when she saw how much fun they were having. That was a start of a great tradition. I strongly suggest that you check out LaRonda Zupp's vlog that gives you a better idea of how the whole balloon things works. Click here to watch it :) It has yours truly featured.

But let me give you a little background information. Since the Karaoke Party is supposed to be the main event that everyone looks forward to and the date just so happen to fall the day after Halloween. Some of us decided to dress up. Jennifer and I brainstormed for days, we even got her kids involved. One of her offspring thought it was be a rocking good idea if we were a giraffe - Jen would be front since and I would be the back end of the giraffe. It was a novel idea and I applaud them for their creative endeavors BUT I don't want to be the back end of anything. :) We nixed that idea. I came up with this idea to be Abby on NCIS. I was really stepping outside of my comfort zone because Abby is gothic with chains, black lipstick and the ultimate combat boots and this Abbie that is typing out this blog is all about classic ivory lace dressed in chiffon and strands of pearls but as you can see, I managed to pull it off.

Jennifer decided to be her natural peace loving self as everyone's favorite hippie complete with shoes that brought her to a final height of six foot, five inches. I had a crick in my neck by the end of the night. :) She is hunched over in this picture. You will see the full heightage further down.

We were not the only ones dressed up! From left to right - LaRonda Zupp from Ear of My Heart as the cutest little fairy, Ken Arcia brought Elvis back from the dead, Abbie as Abby and Jennifer as the tallest flower child in the history of mankind.

Surprisingly enough, I thought it would have taken me a couple of drinks to get me up on stage to sing but with a little coercing, I got up there completely sober. I was doing my best Milli Vanilli impression. I look rather convincing don't I?

This is my favorite picture. This is Thing 1 otherwise known as Maddy, the daughter to one of my very good friends, Tina Childress. I wanted to take this little girl home with me. I was just so impressed with her intelligence and her signing capability - far better mine. Plus, I was having a political discussion with the little McCain supporter as we were walking down a busy highway made it all the more fun.

This is Mr. Dave Litman and I spreading the good word of peace, love and rock and roll. :)

Tina Childress as the Dragon and her adorable munchkins, Maddy as Thing 1 and Mia as Thing 2, Jennifer the flower child and yours truly signing off.

This is the founder of ALDA, Bill Graham with the very lovely and lively Elvis. :)

It was good times, good times indeed. You can go here to check out more pictures from the ALDAcon and if you are interested you can join ALDA on Facebook. :)

Cogan's Syndrome

2008-11-07T19:45:00.004-05:00

There are many reasons a person can lose their hearing. Some people lose it gradually and some loss is sudden. My inbox is littered with people that go from one extreme to the other - perfect hearing to sudden deafness. Many personal tales have words like Autoimmune Inner Ear Disease, Meniere's disease and Meningitis are duplicated several times over.

I've seen the symptoms sprinkled across my screen so much that they almost seem to run together.

hearinglossvertigotinnitusphotophobiavomitingdizzinessnauseamigraines

Well, I learned about a new one at ALDA. I was reading the CART screen captioning the voice of a woman that identified herself as a Coganite.

Coganite, Coganite, Coganite

What the hell is a Coganite? A Coganite is a person that has suffered from Cogan's Syndrome. It is a rare, extremely rare autoimmune disorder can cause deafness and blindness. I believe I overheard the woman say that there has only been about 150 cases in the United States. So yeah, I would say that rare alright.

The symptoms of Cogan's Syndrome are:

Rapid onset of hearing loss in one or both ears
Vertigo
Nausea
No balance or severe gait
Tinnitus
Nonsyphilitic Interstitial Keratitis (inflammation of the eye),
Sensitivity to light
Vasculitis (inflammation of the blood vessels)
Arteritis (inflammation of the walls of arteries)

It seems to occur in young people from the age 22-29 years old. It has been known to occur in some older people but it is more common with the younger crowd. No one knows what causes Cogan's Syndrome. The good news is that there is a treatment for Cogan's which is cortisone type medications such as everyone favorite mood changing steroid -- Prednisone. The bad news, if it is not diagnosed quickly, a person usually suffers from a complete hearing loss and partial vision loss.

The good news is that no one has to deal with this alone. You can contact the Cogan's Contact Network if you or a family member has been recently diagnosed and you want to connect with others that have been down this road.

For the rest of us, we can inform our doctors of this extremely rare condition to raise awareness because an affected person hearing and sight can be saved and it is only a matter of time that it can.

I. King Jordan at ALDA

2008-11-04T12:22:00.006-05:00

Glancing through the ALDA program book, I came across a familiar name that was going to be giving a speech at a luncheon. I found myself wondering, "Who is I. King Jordan?" because I hadn't the faintest idea of what he has accomplished. With a little Googling here and there and chit chatting amongst others, I found out that he became the first deaf president of Gallaudeut University after a week long protest in 1988. I didn't know too much about him because I was only eight years old. I was more into running over my cabbage patch dolls and beating the old commodore 64's up. Plus, I wasn't into watching my non-captioned television.

Back in 1988, Gallaudet Board of Trustees Board of Trustees had three finalist for presidency position, two of them being deaf and I. King Jordan being one of the two. The Board of Trustees Board of Trustees announced that they picked a hearing person for presidency, a woman named Elisabeth Zinser. There was a member of the Board of Trustees name Jane Spilman that said something to the effect that, "Deaf people are unable to function in a hearing world." After years of oppression, the students, staff, alumni and faculty felt it was time for a deaf president. This started a week long protest called "Deaf President Now."

The first day, the campus marched from the University to the hotel where the Board of Trustees were holding they're meeting and demanded an explanation. This march continued to the White House then to Capital Hill and back to campus.

The second day, the protesters took steps to block access to the campus and the board members were presented with four demands that were promptly dismissed.

Zinser must resign and a deaf president selected.
Spilman must resign from the Board.
The percentage of deaf members on the Board of Trustees must be increased to at least 51%.
There must be no reprisals against any of the protesters.

The protesters marched back up to Capitol Hill and started to attract media attention.

The third day, campus was reopened but students boycotted classes. There was four members of the student body emerged as leaders of the protest. By now, the DPN Revolution was on every news channel and newspaper across the country.

The fourth day, Jordan, the four student leaders and Elizabeth Zinser had a meeting. The students encouraged Zinser to resign but she did not want to comply. There was a press conference held that day where I. King Jordan announced that he supported the Board of Trustees decision to pick Zinser as president.

The fifth day, Jordan retracted his support and Zinser resigned. The students protests and rallies intensified because only a half of one of the demands have been met.

The sixth day, nothing much happened apparently.

The seventh day all of their protesters demands were met.

I. King Jordan was named the first deaf president of Gallaudet University.
Spilman resigned from the board of trustees.
Phil Bravin, the only deaf member on the Board of Trustees was appointed Chair.
No reprisals to the students.
A task force was going to be created to ensure that there will be a 51% of the Board of Trustees will be deaf members.

Therefore, history was made. The students accomplished so much in so little time. It was time that someone that was one of them took over. Once I learned the history, I was really excited to listen to I. King Jordan give a speech while I was at the ALDA convention. He is late-deafened. He lost his hearing at 21 years old in a motorcycle accident. He talked about how technology has changed over the past twenty years. Back then, there was no closed captioning or no professional interpreter services. All we had available was basic email, pagers and TTY. Now we have options like interpreting, closed captioning, CART, PDA's and Blackberries, email attachment and text messaging, Captel, VRS (Video Relay Service) and VCO (Voice Carry Over). Times have truly changed.

He started talking about advocacy work since he is a full time advocate for the deaf and disabled. He left quite the lasting impression on me when he said that if you could reach to one person, help that person become a strong deaf individual. Being deaf can take a toll on a person especially when they have had perfect hearing at one point in their life. There is no reason why they have to face this alone.

He brought up the fact how cochlear implants are subject of sensitivity with the Deaf Culture. I know this first hand because a majority of the hateful discrimination that I get is from culturally Deaf people that feel that there is nothing wrong with them. I find nothing wrong with them either but they find an awful lot wrong with me because I chose to hear with a cochlear implant. He talked about how cochlear implants change the way communication happens because those of us with a cochlear implant listen and talk more then sign. He expressed that there should be a way to reconcile the different communication methods. This brings me to a profound quote that Jordan used to close his speech.

"Don't ever forget that a deaf person with an implant is a deaf person with an implant. You stay a deaf person but the technology helps you with your communication."

Jennifer, I. King Jordan and Myself.

TV in a Hotel Room with No CC?!

2008-10-31T15:29:00.004-04:00

Ever go to a hotel room where they have a television with no closed captioning?

To make things even worse, the hotel has a special remote control with a menu that just gives you options to buy porn.

So you wander over to the front of the television and all it has is super simple buttons to change the volume and change the channels? All of us know that we need a MENU button to turn on the closed captioning.

So what is a deaf person to do? Just hold the two volume buttons together simultaneously and just like magic, instant access to the closed captioning menu!!!

It is kind of funny but at the Doubletree Hotel Magnificent Mile, they had to dispatch a couple of their finest engineers to a couple of the ALDA attendee's rooms to figure this out.

And for the record, I didn't need an engineer to figure that out :)

ALDA's President's Lunchon

2008-10-30T14:32:00.001-04:00

My first night in Chicago involved the Magnificent Mile that is like the Fifth Avenue of New York City. We went to the Big Bowl where I had well, a big bowl of Chicken Pad Thai and for desert, a pretzel dipped in multi-grain mustard. We were adopted by the veterans of ALDA with no problems. I met the man who co-founded ALDA in 1987, BIll Graham. I was forewarned before I came here about ALDA because most of the people here cannot benefit from hearing aids or cochlear implants but what really surprised me was the amount of late deafened adults that signed. Logically, you would think that this is a group that has gone deaf later on in life for various reasons and has chose to learned sign to communicate. It's a blissful environment, one that I have been adapted into quite well. It is total communication access here. If one doesn't speak, they sign. Between Jennifer and I, we can get through a conversation. If we are completely lost, they are so patient because most of them remember what it was like to start off young and fresh at the signing game. If we are so lost, we grab someone else to interpret for us. If that doesn't work, the pads and pens are brought out. Its not like out in the busy hearing world where I get a huge exasperated sigh or infamous eye rolling from hearing people. Whatever works for you whether it would be a tap on the shoulder of rapidly shaking your hands in front of someone's face, you won't get any eye rolling here. Being here right now feels like a comfortable old shoe that you don't want to part with.

Right now, I am sitting here at the Presidents Luncheon in a packed ballroom, situated right under a glass chandlier with crisp white sheets adorning the table. My glass of water is half full while my tummy is full as can be. I am watching conversations being carried all across the room. I'm watching people communicate with their mouth full. I am staring at two huge CART screens while an interpreter translate the signing of Dr. Robert Davila who is the ninth president of Gallaudet University into voice. Not one person is left out of his speech. I am going to go see if I can get the CART transcript emailed to me.

Stay tuned!

Newcomers Orientation!

2008-10-29T20:33:00.002-04:00

I have arrived in Chicago for the ALDA Convention. I am sitting next to LaRonda Zupp of Ear of my Heart and Jennifer Thorpe of Surround Sound.

Alex comes to visit!!!

2008-10-29T14:54:00.004-04:00

A few weeks ago, I invited a fellow blogger Alex of Life of the Hard of Hearing to come walk with me for the Garden State Walk 4 Hearing. I first met Alex on Seek Geo's site in his chat room and we just clicked. Our upbringings were very similar except for the fact that he used Cued Speech to learn how to speak and I learned through speech therapy, five years of it. He just has a great online and offline personality.

So, he flew on Friday night and if any of you know me, you know I have a tendency of planning things right down to the wire. This was no exception. I had this in the bag, I was going to pick up him right out in front of baggage claim at 7:00ish and he wouldn't stand around and wait. So I thought, but was slated to arrive around seven something I believe but on my way there and still an hour from the airport, my blackberry croaks to let me know I have a message. It was he telling me that his flight landed an hour early. I thought he was pulling my leg but he landed an hour early. I felt horrible about him standing around waiting. At least he learned what a New Jersey minute is :)

So I picked him up, all 90 pounds of him and started shooting the bull. I noticed right off the bat that he really does have a European, almost British accent. He comes right out of the cornstalks from Illinois and there nothing southern about him. We headed back to my place and coerced him to get some dinner with me. I decided that we would be guinea pigs at this Japanese Steakhouse. We grabbed some food and talked until I almost passed out. That Friday morning, I was one of the lucky ones that had to get up at 2:00 AM to take mommy dearest to the train station. I was shipping her ass down to Virginia to stay with some family for the week. Aren't I nice? :) But more to the point, I was dog tired. I hooked Alex up to the WiFi and showed him to his sleep quarters while I retired to mine.

The next morning, Alex and I headed to the gas station to get gas before going to the Walk 4 Hearing. He was marvelled by the fact that my ass stayed in the car while we had gas attendants do the fueling. He learned first hand what it means to have a full service gas station state. :) Apparently, Illinois is not one of those. I think it is just so much safer and cleaner. I never want to fill my own gas up because you never know where anyones hands have been. :) We started talking about my experiences of going to self-serve gas station and lacking the ability to pump my own gas. Most of the were comical and involved some Eastern Indians wondering what this silly deaf American was doing just sitting in her car staring at the pump as if it were going to magically just insert itself into my car.

We headed to Dunkin Donuts to get my java fix where we had some sunglasses missing in action and then we were OFF! I have a GPS and it was easy peasy as pie to find Mercer County State Park. I was there representing the Bionic Ear Association since I am a member. I introduced Alex to some friends. I met this gorgeous family that I was communicating with a woman whose step father has been recently implanted for the longest time. I shake hands with them and then a yellow jacket started buzzing around the vicinity. I bobbed and weaved and performed some mighty evasive maneuvers thinking I outsmarted the damn thing. Well, Alex saw the yellow jacket got a little fresh by making a bee dive (pun intended) into my shirt. He tried getting my attention but when I'm talking, I like to talk. It’s hard to shut me up sometimes. Well the yellow jacket shut me up because it STUNG me! Here I am, if you will picture this, stripping my jacket and moving my shirt in ways that I don't normally move my shirt especially in front of perfect strangers. They had concern in their eyes but all I could think of is how they must think I'm a lunatic. :) Now bugs give me the heebie jeebies but they actually touch me and inject venom in me, I turn into a hypochondriac! Alex is laughing hysterically, performing a pee-pee dance of sorts. I was asked whether I was allergic. I had no idea, I have never been stung before (surprisingly enough). I became acutely aware of the size of my esophagus and lung volume.

The Walk 4 Hearing started off with a speech, "I don't know if you could all hear me...", but I was too busy on my blackberry googling allergic reactions of yellow jacket stings. The good thing is that I had an EPI pen in the car because I'm allergic to mushrooms. I figured if I were allergic I could shoot myself in the leg and have Alex drive me to the hospital although he doesn't look like he is old enough to drive. He should never drive a mini-van because he would look as if he were borrowing moms car. :)

The walk began and it was beautiful. I decided to walk with my buddy Wayne Roorda. He has a CI on his right, Alex has bilateral Hearing Aids and I have a CI on my left. Alex was stuck in the middle for maximum acoustics :) and then we walked. It was beautiful, the scenery couldn't have been any better. The leaves are changing colors and it provided some sweet looking backdrops while we were peddling right passed walkers.

Along the way, I met up with a beautiful woman name Debbie who is from Jersey, who is a late deafened adult who has a CI. I have been communicating with her on and off her journey. Since she has had perfect hearing most of her life and started having problems about seven years ago with her hearing, it was a big adjustment on her end for learning how to hear with a CI, plus her audiologist didn't seem so gosh darn wonderful. She was an absolute delight to be around and I can't wait to meet her again. She sent me an email with a phrase that made me smile from ear to ear, "It was the first time in a long that I felt like I was a part of something." That is what I wanted to hear and I am glad that I was a part of it.

Alex and I had enough of rogue leaves hitting each other in the face, we decided to head back to my place to get bundled up for Six Flags or Great Adventure as us New Jerseseans call it. I have to say Alex, is one cheap guest. He does not eat. There is a reason for this, he is what you call a miracle baby. He was born with a stage three Omphalocele which is where the intestines, liver, and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles of the abdominal wall. Basically all the internal organs are spilled out. and was the first baby west of the Mississippi River to live from it. Read his entire story here. He lost his hearing resulting from antibiotics but hearing loss was a small price to pay for what he went through. He is a special person to me :) Because of that, his stomach is a size of a gulf ball and he doesn't eat much. He told me this before he flew here and I scoffed. I had every attention of fattening his bony butt up. Ha, joke was on me because I couldn't get him to eat. I'm all about food. I eat six meals a day religiously, I'm sure he thought I could stand to miss a meal or two. :)

We headed off to Great Adventure, only to discover that most of the rides were broken down but as the night wore on, more and more rides came back online. If you have a cochlear implant, you CAN go on rides but be smart and remove the external part. :) This ride we wanted to go on was Kinga Ka, this 428 foot high roller coaster that reaches a speed of 128mph. It goes straight up and over a hill and straight back down. Nuts right? At the time we took a look at it, it was a 150 minute wait. Neither one of us is crazy about waiting. So we pranced around the park picking other rides. Then a bunch of girls started making a fuss. Alex told me that there was a racoon in the park. Well, just as he said it, this raccoon dashed out of the bush and headed for the tree. I backed up into the fence practically, wielding my black berry and thrusting Alex in front of me. The racoon stared right at me and I put my meanest poker face which intimidated him because he backed up and went up the tree. However, I kept a close eye on him if he tried to go over the branch and do a flying leap at me. The line moved and I pushed Alex before the ball of his foot could arch upwards to make a step. The raccoon ran to and fro from the bush to the garbage can. Alex told me, "I have never seen a raccoon in an amusement park before." I'm looking down at my blackberry and I fixate my eyes on him and he suddenly realized whom he was with. I am sure that some people that read my blog must think I am full of it but if you ever met me, you will realize I don't have to make this stuff up! :) Alex suddenly realized this.

At the end of the night, just before the park closed, we made a mad dash for Kingda Ka that virtually had no line. However, the second we got on and buckled in, there a problem with the ride and it had to be shut down. Logically, I should have taken it as an omen but I don't listen to myself. But I was depending on Alex, a fellow deafo to tell me what the hell was happening since I had my CI off. The ride goes up to a 128mph which is thirty miles less then take off speed for an airplane, I didn't want to see my CI become airborne. :) I joked that I would find my car in the parking lot since we were going to be 428 feet in the air. I was sure I could find my Incredible Eco-Egg somewhere down there.

A half hour passes, the attendants buckles us in but since Alex had a fraidy cat face on, the guys were messing with him by telling him he didn't need the strap for the ride :) His heart skipped a beat. I'm used to that kind of demented humor :) Then we were off! We came down the ride and I found my care. I flung my arm right in front of Alex's face, narrowly missing his honker just to point my car out. He was trying to recover and sweet talk his bladder into holding his urine just a bit while longer. He had no other choice because when we came back in to get the hell off the ride, some idiots in the front were yelling, "ONE MORE TIME!" I couldn't hear this but I saw arms flailing and Alex relayed their demands to me. One time on this ride was good enough for me, I was NOT prepared to go a second time. I told Alex that they weren't getting a Christmas card from me.... Poor Alex, if he had blue eyes, they would have turned green because he really had to pee. Round two of the Kingda Ka was even better! :)

After Alex relieved his pint size bladder, we headed back to my place. I was dog tired. Alex stayed up and wrote two blogs and I promptly checked into the pillow factory. The lil tyke wears me out :) I was so sad to see him go. I had such a wonderful time with him and I am eagerly awaiting seeing him at the HLAA Convention in Nashville since he lives only 2 hours away! :)

En Route to ALDA!

2008-10-28T09:17:00.004-04:00

Guess where I’m going tomorrow thanks to all of you!?

Chicago for the ALDA Convention! I have managed to raise $800 to date which is a phenomenal amount, far more then I anticipated. As the tide of luck would turn, I was fortunate enough to be able to obtain a scholarship that covers the cost of registration and hotel. Many people, both friends and strangers, have helped me make this possible and in turn have helped me become a better person. I want to thank all of the bloggers for the posts they have written and for being part of this. I want to thank the people that have written me some of the most motivational emails that I have ever received in my life. You inspire me to make myself a better person! Thank you for providing me with your support even with the financial crisis that the United States is going through. I never thought that I would get this much but thank you for caring about what people talk about online.

My luck just doesn’t stop there. My bionic belle, Jennifer was able to get a scholarship quite some time ago to attend the convention. Through some miscommunication, she was left without a roommate. Welp! Guess who is her new roomie?! Moi! It was just meant to be. Chicago will not be the same after this. I am looking forward to meeting so many new people, dressing up for a night out on the town for the banquet dinner and getting into my gothic girl costume for the Halloween slash karaoke party. I am willing to bet that there a surgeon costume because we need to read lips after all :) I am looking forward to meeting some beautiful ladies who I give the utmost respect to, Karen Putz from A Deaf Mom Shares Her World and Laronda Zupp from Ear of my Heart blog. So excited!!!

Now, I am going to trying something new at ALDA in preparation for my new role for the upcoming HLAA convention in Nashville on June 18^th to 21^st 2009. I have been asked to be the convention blogger (Yay!) and I have graciously accepted with open fingers! I am planning on providing real time updates including video snippets and pictures. So stay tuned and be patient as I try to figure out this roving reporter role! :)

Again, I want to thank everyone with sincere gratitude for making this possible!!!

Garden State Walk 4 Hearing

2008-10-18T13:56:00.007-04:00

Greetings from Mercer County State Park! Alex and I are at the Garden State Walk for Hearing walking in this invigorating frigid fall weather for 5k.

Donning the quintessential scarf, our blood circulation is flowing, the hamstrings are burning and deafness is in the air. Over a hundred and twenty people showed up all ages and different sizes have trekked their way through the beautiful autumnal scenery. There was even some lil tykes running around sporting some of the tiniest hearing aids I have ever seen in my life. I wish I had those size but I can't complain, I got the Cadillac of hearing technology embedded in my head. :)

I had the chance to put a face with quite a few people that I have been talking to online. One particular person was Debbie who is a beautiful soul, inside and out. She is a late deafened adults who has only had a hearing loss for seven years. She received a cochlear implant about a year ago but she was having a tough time adjusting to hearing with a cochlear implant after having perfect hearing all her life. I shared with her my experience and frustration. I told her it would get better with time and it has improved significantly. She wrote me this lovely email that just made my day! She made mine by coming out and walking with me :)

I am so very happy that you will be able to attend ALDA. I am glad you asked for help, if we don’t ask we don’t get. We all have faith in you because of who you are. Abbie, I can’t begin to tell you what you have done for me, support wise. I was so discouraged and depressed, if not for you I would be a basket case this very minute. I was so out of the loop as far as understanding what was happening, did not have the faintest clue what questions to ask. Your knowledge and inspiration is part of what has kept me going. I will always be grateful for your assistance. You attending ALDA can only help increase your knowledge and inevitably help the rest of us on our Hearing Journey. My ears are crossed and can’t wait to see you on Saturday.

True to form, I know how to make a lasting impression on someone. I met Jill and her stepfather who has a cochlear implant who lives right down the street from me. I didn't get to talk to him because some pesky yellow jacket managed to sneak into my jacket and sting me! I immediately started stripping my clothes off in front of this family which was probably a little more then they bargained for. :) Alex was laughing his southern butt off and I was freaking out because I couldn't find the yellow jacket anywhere. I have never been stung before in my life and everyone first question was, "Are you allergic?" Well, I had no idea :) The hypochondriac in me decided to get on the blackberry and google allergic reactions and treatments for yellow jackets. Good thing is that I am not allergic. Bad news is that the damn thing smarts. Here is a picture of my battle wounds from the Walk 4 Hearing. :)

All in all, it was a great day supporting hearing loss!

ALDA Convention Fundraiser Update!!!

2008-10-13T19:44:00.006-04:00

Well! I am dubiously impressed with all you folks out there!

THANK YOU!!!!

I have managed to raise $685 TOTAL in just ten days! I want to thank you all for your support! Even though I didn't reach my goal, I have raised enough money to cover the air fare and hotel which is a feat in itself! So thank you all, thank you for having faith in me! The support means the world to me! I might have some good news to report but I can't tell you yet because I don't want to jinx myself!

However, I started a new fund raiser in the meantime to see if I can reach my goal of $1,000. If I have happen to obtain anything over $1,000, I am planning on donating the overage right to ALDA. If you have paypal, you can just click on the ChipIn link or email me for other ways of donating.

I want to share some of the greatest cheerleaders on the blogsphere and their pleas to help me:

Jennifer from Surround Sound wrote this on her uplifting post called "Can you help?" on her blog:

Abbie over at Chronicles of a Bionic Woman is trying to raise funds to go to this same conference. Abbie wants to go for many of the same reasons I do...to be encouraged and to encourage...but Abbie goes a step farther...she shares what she learns with us back at home. I've said before that of the Jen/Abbie duo, Abbie is the brains of the operation...she is able to break down some of the complicated information presented at conventions and bring it home and share it with the rest of us. She has posted on various topics on her blog such as Bluetooth technology, phone compatibility ratings, Web CapTel, and various bits of ADA information that I just can't wrap my brain around. She doesn't just take in this information for herself...she is out to share what she knows and help make the world a little easier for the deaf/hard of hearing people around her. Her blog is not only a fun read, but a wealth of information. She contributes so much to the deaf/hard of hearing world around her...and now we have a chance to give back! She is trying to raise 1,000.00 to cover her expenses to the ALDA convention...so far she is over halfway there. Her goal is to have it all by October 13th...we have a few more days...we can do it!!

Sam over at Welcome to Sam Spritzer's Web Site posted this blog slash personal ad (Thanks Sammo! :)

Abbie at Chronicles of a Bionic Woman who wrote a very touching article about Anna Rice needs our help!

Abbie is a fellow CIer who happens to be one of my favorite fans. She is a a very proactive voice in the CI community and, an inspiration to others. Whether the person is someone who is considering CIs or is newly implanted, she is one of the first to jump on board whenever a visitor comes to Hearing Journey.

Later this month, there will be the 20th annual Association of Late Deafened Adult (ALDA) Convention in Chicago. Abbie who is single (and looking) wants so badly to attend this conference to spread her wisdom, help others, and learn more about the CI process for the late-deafened so that she can be better prepared to help those who come to Hearing Journey.

She is raising funds in order to attend this conference. Of all the CIers I can come across, I can’t think of a more deserving person. Won’t you please help her? If yes, head over to her blog to see what she is about and how to help. And thank you from the bottom of my heart, if you do!

Jodi over at An American Mom in Tuscany: Jordan's Cochlear Implant Story posted just what I expect from Jodi, absolute genius and one hell of a cheerleader of a post called "Abbie Needs Help...to Pay it Forward" starts like this:

Ok. We all know that Seek Geo sleeps with a copy of Abbie's magazine cover under his pillow and that she has a thing for anal rice. We know that she is a trash-picker and a leaf-raker and oftentimes confuses words like this: "When a man says bosom, it sounds like booze."...

(Check her blog for the entire post... its well worth the read! :)

PLEASE HELP ABBIE REACH HER GOAL!!!!!!!!!!!!!!!!

Ulf from Becoming Deaf in Norway 2007 wrote this on his blog:

A beautiful soul in the CI-blogger community is trying to raise 1000$ in order to attend the ALDA Convention (Association of the Late-Deafened Convention). Visit her blog for more details. She is one good soul who is alway warm, generous and supportive. She really deserves some support.

Halfway mark reached for ALDA Convention!

2008-10-08T10:44:00.004-04:00

I am SO stoked! As you know, I am trying to raise a $1,000 dollars in ten days to attend the Association of the Late-Deafened Convention in Chicago from October 29th to November 2nd because I want to learn and educate myself on the different needs of those that are late-deafened. This past Saturday, I posted a blog asking for help and many thanks to your support, you have helped me achieve over 50% of my goal.

I am literally overwhelmed and so honored to have so many of you sponsor me! Thank you is not enough for all of you who pulled through and made a donation in these tough economic times to give me a chance to experience this.

Mike Royer who is truly, a sensitive and emotional guy posted this on his blog:

Abbie Cranmer is raising funds in order to attend the 20th annual Association of Late Deafened Adult (ALDA) Convention in Chicago. I can't think of anyone more deserving to go -- Abbie is truly the ears, eyes, and voice for the cochlear implant community. She is a brilliant writer, one who can captivate and substantially contribute to the well-being of others with encouragement, love and support. Going through the CI process is indeed, a process. We all need a friend -- please help send our "kid" Abbie to camp!

Tom Hannon, a wonderful man and a late deafened adult who has a cochlear implant wrote me this email that just places everything in perspective:

Oh dear Abbie,

As a man up woke up suddenly profoundly deaf two years ago on 10.10.2006 I would have never known in my wildest dreams what laid ahead in the next 352 days in a Deafening World of Silence! And what I discovered I never knew existed, and how I discovered much of it was from you!

Thank you for your support!

12% Reached on ALDA Donations in TWO days!

2008-10-06T08:45:00.008-04:00

In just two days, I have managed to reach 12% of my goal! I am just amazed at the amount of support that I am receiving.

I want to share with you some of the comments and blogs spreading the word:

David, a newly late-deafened adult over at Five String Guitar wrote this post that truly made my day.

Nine days from surgery. I am optimistic of course, as always. Failure of any sort, is not even considered an option, as is any medical mishaps.
As my cochlear buddy Abbie told me back in April, on the eve of my first surgical implant when I blogged about my worries after the surgeon outlined the circumstances that can happen (paralysis, taste disorder and death) " Not on my watch, Sir". Abbie typed in my comments in response to my fear of the worst case.

That made me feel good. I believed her then and do now. I have good people in my life with positive thoughts, wonderful advice, and amazing spirit. I like it.

Little things mean a lot? No sir, little things mean EVERYTHING. I have never forgotten those words that Abbie typed in my comments, because they took away a fear, and brought a calmness and determination in me that still serves me as I get ready for my third surgery in six months. A surgery that will once again require a high speed drill to come precariously close to serious parts of my brain....

Val posted a blog about charity event. You can also check out her newly released book, I'm All Ears :)

On to other news... Abbie is raising money so she can attend the Association of Late-Deafened Adults convention known as ALDA. Abbie is a fantastic advocate for hearing loss awareness, she is a cochlear implantee (if that's the proper term, I use it all the time) and uses her fantastic writing skills to create awareness on her blog Chronicles of a Bionic Woman . So donate to send her to this convention because she uses her knowledge and spreads wisdom to many.

Rachel from Cochlear Implant Online left me this extremely supportive comment:

She is a BIG advocate for cochlear implants by blogging various information about cochlear implants, posting comments on other blogs, and helping out with Deaf Village. In order to continue to be a great advocate, she needs to keep herself up-to-date with the latest information. By going to this conference, it will allow her to continue to receive more information and pass on the information that she learned to others.

Jodi has made an announcement this on her blog.

A commenter name Frank just left this on my blog:

Hi Abbie
Looks like you're making progress. Ignore the naysayers. Maybe they're just upset that they didn't think of it first. We are glad to help. Your blog is a real asset to people with hearing loss!

Sam from Welcome to Sam Spritzer's Web Site just left this wonderful comment:

No one is more deserving than Abbie who has made her mark on the CI community a thousand times over! Her contributions on Hearing Journey are immensely valuable to anyone who is considering a CI. I am proud to have met and known Abbie!

Thank you all for your support!!!

Would you help send me to ALDA?

2008-10-03T11:13:00.006-04:00

Would you help me attend the Association of the Late-Deafened Adults Convention (ALDACon) in Chicago on Oct 29-Nov 2. I am trying to aim for $1,000 dollars in ten days and during the course of that time I will keep you all updated! The majority of the hard of hearing, hearing impaired and deaf people in the United States developed a hearing loss later on in life. There are some people with perfect hearing that go to sleep one night and wake up the next morning – completely deaf. You have people that worked in loud factories that for every dime they took home, the sound took another hearing cell. You have more and more military personal coming back home with a hearing loss in addition to numerous of other problems. These are the people that I want to learn everything I can about the late-deafened experience.

A person coming from my background – knowing nothing else but living with a hearing loss feels the need to branch out and see how others cope. I had a lifetime of adjusting my eyes to associate the lip formation with words with what auditory input I had. The reason why I would like to go to the ALDAcon is because I want to educate myself on the needs and how I can contribute to empowering those that began their struggle with communication later on in life. It is no surprise to many that I have mentored several people regarding cochlear implant and most of them are late deafened. This is the one group that leaves that just tugs at my heart because I see their struggles written across their face trying to figure out how to make sense of this new dimension of life with a hearing loss.

I want to learn from them just as much as I want them to learn from me.

A Year in Review - CI Scores

2008-09-15T19:33:00.008-04:00

There, I was today at the Audiology Department of the Hospital University of Pennsylvania, sitting cross legged in the same chair that I sat in 364 days ago when I had my cochlear implant activated. Time is a funny conundrum of sorts because some people claim it is relative, others absolute but the fact of the matter is that it just – flies. My temperament was flickering with nostalgic moments of how just a day shy of a year ago I was reintroduced to the noisy world of sound. I still remember how I wanted to commit mass genocide of anything with the consistency of paper. I remember trying to harbor laughter when anyone – man, woman and child spoke to me as if they were practicing to become an extra in an Alvin and the Chipmunk movie. I remember how a helicopter dangled fifty feet above my head and heard not a thing. I remember my emotions running amok – one day I was on a high, the next I was depressed and one-second I would be savoring a sweet melody and the next I would frown at gosh awful noise. I remember my eye twitching because I was too hasty with my volume and I praise the day it was resolved. I remember people telling me to be patient and that I will eventually reap what has been sewn in my head. I remember all of tedious and trivial details as if it were yesterday and yet I can’t remember what I had for breakfast this morning.

It has been a while since I had a mapping, seven months to be exact. I have developed quite a few gripes over the past couple of months. I have completely maxed out on my volume. I still have the utmost difficulty understanding men and some women. I can understand women with no problem but that can be a bad thing because I understand them too well sometimes. When a man says bosom, it sounds like booze. When a woman says thirteen sounds like fifteen and vice versa. I used to be able to hear the airplanes from in the house and now I can't which is disturbing because I live right near a military base and there are constantly flying overhead. I used to be able to hear better in noisy conditions but I think that is due to my CI needing a tune up badly. Edelweiss sounds like anal rice or anal vice depending on who is saying it and lip reading doesn't help me in the least little bit. I walked in and plopped down and unleashed my tiny list of tasks to be tinkered to my dear audiologist.

Right off the bat, she raised my volume which was a dire improvement. With raising the volume, she raised distortion also. She flattened the lows and tweaked the high frequencies. I was able to hear the sizzle of the S’s and rushing air of the SH sound. It sounded nice and crisp. Amazing what just a little bit of tweaking can do. I am happy to report that Edelweiss now sounds like idle vice which is a drastic improvement over anal rice. Whew! It was time to go into the booth!

You will graphically see as I provided that when I was tested for CI, I bombed every single test with my left ear – zero’s across the board. Quite pathetic I know but what did you expect from an ear with no stimulation for over 15 years.

A month after my CI activation, I was plopped in the soundproof jail and I scored an average 44% on sentences in quiet. The harder test is the words which I scored 8% on, but I managed to score 33% on the phonemes. I get points for phonemes because that means I was able to guess part of the word. For example, the man in the speaker said tick and I said kick – I get points for ick. :)

Five months after activation, I got stuck in the jail again and I scored an average of 79% in sentences in quiet which was well – a 79% improvement. :) My audiologist Jennifer decided that I progressed enough to do the HINT (Hearing in Noise Test) test. She gave me the +10 HINT which means the voices was raised 10dB above the noise and I scored a pathetic 34% on that. Now my one year mapping results – I scored 79% on the sentences in quiet which is not a major improvement from my last test, but I was never one of those people that was aiming for 100% because all I wanted to was to hear something. I feel that I perform much better in real life and the following tests scores prove that. These are the result of the +10 Hint – 74% which is a great improvement from my last score of 34%. My audiologist decided to give me the hardest test – the +5 HINT test which means the voices is raised 5dB above the noise and I scored – 65% :)

Some of you might go, you went through surgery and got your head cut open and you can’t even get over 80% comprehension in quiet! When it comes down to it, I didn’t get the cochlear implant to hit hundred percent in a soundproof booth; I got it to gain anything over zero percent. I was happy with the 44% a month after activation and I am happy with 80% now. However, in all actuality these test scores do not reflect how I feel that I perform in real life. I can see how well I perform just by what I am picking up.

Patience is a beautiful thing when you have it and you definitely need it with a cochlear implant. I got 364 days of certifiable cochlear implant experience notched in my head and I can’t wait to see what tomorrow and the next day brings to me. Each tick of the clock leads to a more enjoyable experience. Put it this way, getting a cochlear implant is like making a fruitcake – it Is a lot of hard work but the longer it sits, the better it is and my bionic fruitcake has gotten better and better with time! :)

The Sounds of Music...

2008-09-02T19:46:00.006-04:00

As it would seem that the older I get; the more avant-garde my moments of lacking comprehension seem to get. Either my superb lip reading skills have diminished in the past year or my brain is becoming particularly innovative when watching the zygomatic motion play an intricate part of shaping the lips in such a fashion that I am supposed to comprehend. Even though I have a cochlear implant, I still have incomprehensible moments of where I am left with a rosy kaleidoscope marbled across my face but this moment I must share with you all.

I was spending a lovely evening at home this past weekend, watching television and ooVooing with my bionic belle, Jennifer and my buddy Wayne from around the way. Mother dearest was doing her own thing looking through the online TV guide when she came upon the movie, The Sound of Music. I have never watched the movie but then again, like many movies, they were not available with closed captioning when I was younger. However, we live in a dawn of a new closed captioning era and all the movies I have been so wrongfully deprived of, I can now watch. The capacity of knowledge for the Sound of Music was limited but I knew there was a lot of singing involved from commercials. I made a general announcement on ooVoo that the aforementioned movie was coming on which prompted Jennifer to belt out to the tune of B flat, you guessed it - the Sound of Music. I thought I would have loads of fun with this serenading my two onlookers with my sounds of music, which I will vehemently admit is akin to the Tasmanian devil mating.

And surprisingly enough, I had managed not to butcher the Do Re Mi song when I did my amateur rendition. My mother started a conversation shortly afterwards about a doorbell that my cousin has that chimes after a song in this movie. However, I was having minor difficulty in understanding the name of the song.

“Abbie, I was talking to Patty one day and I heard her doorbell. It chimes anal rice!”

I'm pretty sure I heard that wrong.

“Excuse me?”

“Anal Rice, it’s a name of a flower.”

That’s an odd name for a flower and a song. I furrowed my brows and looked confused.

“Now, it’s a flower?! I thought it was a song.”

“Yes, its a name of a flower and the name of the song in the movie... Anal Rice”

That can’t be right. I’m totally confused. My mother grabs her laptop, starts surfing on the information highway to YouTube to bring up the mysterious anal rice song that doubles as a flower.

“Did they play it yet?”

“No, but here it is!” She presses play on YouTube and I clearly have never heard this song before.

“So this song is...?”

“Anal rice.”

Jennifer and Wayne are listening to this entire conversation. They could clearly tell by the look on my face I did not comprehend the mysterious song title.

“I’m sorry Mom; I don’t understand what you are saying.”

“Anaaaaal rice!” She learned forward, spoke very slowly here and enunciated every word while I damn near went crossed eyed focusing on her lips.

“Are you seriously saying anal rice?”

She flares backwards in hysterics. gasping for air and turning red. I figured she was okay as long as she wasn't turning blue. But it confirmed that she wasn't saying anal rice after all. After a few moments, she recollects herself and puts on her straightest face.

“An-nal rice.”

I shake my head. I did just not understand this. I type in the chat box to Jennifer and Wayne that my mom is talking about anal rice.

“I still think you are saying anal rice. IM it to me?”

My mom, still having a grand old chuckle, feverishly searches for a piece of paper and a pen. “No! I’m writing this out.” I knew she meant business. She wrote out the name of the song and/or flower and passed it over to me and it read - Edelweiss.

"You do know that it looks like you are saying anal rice." She mouthed into a mirror and confirmed that it did. Like I was going to make up that something looks like anal rice on the lips!

“Oh that makes more sense.” Shortly thereafter, Von Trapp family started singing Edelweiss. I listened but it still sounds like anal rice no matter who said it, sang it or screamed it. I can say that I successfully ruined my mothers perspective of the song. She decided to include the lovely doorbell owners in the loop via email...

Hello Stroh and Patty,

Let's call this "Fun moments with the deaf. :)

While talking to Patty one day, your doorbell gave off a very melodious tune of "Edelweiss". Now explaining to this to a deaf girl sans head hardware was rather an experience unto itself. Explaining to Abbie who was in lip-reading mode at the time about the flower and song "Edelweiss" has prompted this message.

From now on unto the time when the doorbell ceases to work, the tune of "Edelweiss" will be known as "Anal Rice" as the lip formation of this word looked just like I said exactly that!

With this little bit of mirth and love to all three of you, I bid you goodnight hoping this finds you all in good health.

Fran

I think my mom might be right, I am seriously over due for a mapping...

Cochlear Implant Anniversary

2008-08-27T12:59:00.002-04:00

I can’t believe a year ago I was sitting Indian style in a paper thin cotton gown surrounded by the ugliest drapes I ever set eyes on observing nurses in colorful scrubs decorated with the sweetest little creatures pushing metal carts from patient to patient.

I can’t believe just a year ago I was listening to a train like sound going around and around my head providing me with an undesirable melody that just wasn’t quitting.

I can’t believe that one year ago today, I underwent surgery to have a cochlear implant inserted just underneath the skin of my head.

Ever since that day, my life has changed in ways that I never thought. I feel so enriched by the people I have met, the sounds I have heard and the experience of discovering what I have been missing all of these years.

Happy implant anniversary to me!

Hearing the Ocean for the First Time

2008-08-20T23:44:00.010-04:00

Later that evening, Jen and I went to Point Pleasant Beach. I grew up with some strong nautical family ties to the ocean. I grew up with the beach at my doorstep. When I lost my hearing in February of 2007, I was still hoping that my hearing was going to come back any day. I realized that it wasn’t after I went on a vacation with a couple friends to Myrtle Beach a few weeks after my nose job. We were only about a block away from the ocean and all of us went down to go for a run on the beach. After spending twelve hours in the back seat of a car barely being unable to communicate with anyone in the front seat, I was looking forward to being on familiar grounds. After climbing a very large sand dune, I saw the great Atlantic Ocean and then I lost sensation in my knees. The warmth of sun was there, the sand diffused underneath my feet and the distinct smell of the salty air permeating my nose just like old times but there was something missing. The ocean ambiance was – dead. I couldn’t hear the waves crashing five feet way from me. The seagulls soared right over top of me and I couldn’t hear them utter a sound. The passersby on their morning stroll stopping to wish us well. I was living a silent movie. The wind kept blowing several strands of hair in my face and I thought with my hearing aids, all I would have heard is the wind whipping around. I just pulled my sunglasses over my eyes and cried while I was running. I decided the second I got back that I was going to make an appointment for a cochlear implant evaluation. I tried to make the best of my vacation by trying to find my hearing in the bottom of a bottle.

Jen and I were on a mission because neither one of us had heard the ocean since our cochlear implants have been activated. I thought it would be a great experience since she is a few hundred miles away from the seashore. I have been hesitant on going to the ocean because part of me thought I might have disappointed in the way it sounded. I couldn’t think of a better person then Jennifer to share this listening experience with. If it were anyone else, I would be willing to bet I would have heard nothing but nagging but this was our moment.

But there we stood, side by side with the full moon illuminating the night sky with the eastern seaboard 10 feet away from us. We tossed our sandals and let our toes sink into the wet sand and we listened. We listened to the seagulls cussing the ocean wind with their calls, the rising roar of the ascending tide and the crashing of the waves, the trickle of water being pulled back into the sea and the gentle drone of foghorns in the midst of the ocean. We stood there just listening to the ocean ambiance discovering how it sounds all over again. It used to sound so harsh with the wind swirling and waves crashing wearing hearing aids, but I realized that a majority of my infatuation with the sea were visual. After 28 years and one cochlear implant, I finally heard the rhythm of the ocean.

The next day, I wanted to take Jen by my job because when I go out on break, I walk passed these trees and I keep hearing this high-pitched sound that mask everything else out. It is driving me bonkers! I keep asking my hearing friend keeps telling me that it is bugs or tree frogs. Somehow, I am not satisfied with that answer. I wanted to see if Jen could pick the sound up with her cochlear implant. They weren't chatty this weekend. Jen even tried to coerce them to talk but wouldn’t you know the darn frogs were off for the weekend?

*UPDATE* They are Cicada Bugs!

After Jen shooting me some strange looks, I pouted because I want my audiologist to map out these friggen frogs. Anyway, I thought we would continue with the nautical theme. I decided to take Jen to the Barnegat Lighthouse whom my great uncle was the lighthouse keeper in 1915 to 1926.

I have been up and down this lighthouse several times, but I felt as they added more steps. I was tuckered out by the time I climbed back down. I had no idea how my great uncle climbed seven gallons of oil up and down those steps every single day. God bless that man.

Then we headed down towards the jetty rocks and admired the boats rocking in the water. We hit up a Sonic restaurant and I got this Route 44 Diet Cherry Limeade and that was very delish. We were so exhausted by the end of the day that coffee didn’t do a darn thing for us.

We just came back home and slapped our laptops on our thighs and typed away until we passed out.

The next morning, it was time for Jen to go back to Tennessee. I didn’t want her to go because we were having so much fun together. I purposely had thought of getting lost so she could miss her flight, but I opted for driving extra slow. I miss her already! But, I wouldn’t trade in the experience of being with her who is someone that can understand where I am coming from in all aspects is unbelievably refreshing. She is a special lady that always has a place in my heart.

My bionic belle comes to vist!

2008-08-19T15:20:00.004-04:00

Every hour of this past weekend felt happy hour because my wonderful friend, CI mentor, fellow blogger and mother of five adorable kiddies Jennifer flew in from Tennessee and stayed the weekend with me! When we met in Reno for the first time, it didn’t feel like it was the first time we met. We clicked, we really clicked. The fun does not falter between us. The thought of waiting one whole year for the next hearing loss convention to see each other again did not appeal to the likes of us. Quite frankly, neither one of us are that patient so we moved it up a bit :)

Friday night, I slipped behind the wheel of my new white Toyota Prius that I have nicknamed the Incredible Eco-Egg, to trek across the Garden State into the city of brotherly love to pick up the fair southern bionic belle. I still get a surge of excitement every time I get behind the wheel because the feeling of being green has a cheaper price tag attached since I am now getting fifty miles to the gallon. That’s right, fifty, 5-0, five dash zero, 50 miles to the gallon :) But, I was ten times more excited that I was going to pick her up and submerge her in the New Jersey finger flippin’ culture for the weekend.

We had timed the flight perfectly because as soon as she got her luggage, I pulled up and we started flapping our jaws. I felt as we picked up right where we left off in Reno - minus the interesting fan club. We had some time to kill before we met up with Wayne Roorda, who is another AB user and his very lovely wife Lili for dinner. Since I am the native, I felt it was my duty to give her a little scenic tour. I picked a part of South Philly that was just a little too urban for our countrified doll. I was watching her facial expression change as our surroundings went from social suburbia where all the houses were decorated with shiny new siding and plantation blinds with to poorly painted row houses with the cheapest bed sheets hanging in the windows littered with cigarette burns haphazardly filtering the afternoon sunlight. I forged ahead down the one way street past the barren school yard. I drove through the underpass where a rusted shopping cart was missing a wheel supported the cardboard structure. When a gloomy site passes by your eyes, it goes in slow motion because it is sad when you realize that is going to be someone’s home tonight. I come to a stop sign, glanced over to the left, and notice a thick young girl covered in tattoos that look as if she were going mullet hunting. All Jennifer kept saying was, “We don’t have things like this back in Nashville.” I bet she didn’t. My gas gauge started emitting a beep and flashing. It was letting me know that I needed to get gas now. I took it as a sign and got the heck out of the ghetto. Women's intuition and all that jazz...

Shortly afterwards, we met up with Wayne and his teeny tiny wife of 30 years at a Mandarin Restaurant in Cherry Hill. I hadn’t seen Wayne since Reno and it was such a pleasure to see him again. This was my first time meeting his wife who just a doll. Jennifer had an itching to try something new and it included tentacles. She decided to try an itty bitty octopus with doctored up with habanero peppers. She cautiously placed the octopus in her mouth; eight limbs and all and then proceeded to chew.

And chew.

And chewed some more.

I went to get my second helping.

Came back and she was still chewing…

Once her incisors managed to macerate the poor thing, she offered to share her second one with me. I toyed with the idea of going on a chewing marathon to burn some extra calories but after pushing it around on the plate...

I politely declined. We ate enough to feed a small army and began to wobble our way out of the door but not before I plowed through four different fortune cookies until I found a one that I was satisfied with :)

After finding the perfect fortune, we took some pictures as you can see here! Wayne and Lili, thank you for dinner, I had a very lovely time and we must do it again!

After dinner, I loaded the Incredible Eco-Egg with Jen and myself and we began the trek back home. I made Jen count how many diners there were along the way. I think she lost count. We managed to get home at a decent time and we just chatted with my mom. I introduced her to the flying fur ball otherwise known as Bella. She took a liking to the southern belle. :) Surprisingly, we closed our eyes at a decent hour…

The next morning, I presented to Jen a cup of coffee big enough to go fishing in. I think my mother’s special blend got her motor running in no time at all. We put our batteries in and got a move on to face the day. I introduced her to one of our shiny aluminum sided diners where everything is cooked from scratch and served on 20” plates. We ordered some French toast, which was more like half a loaf of bread sliced three times. We wobbled out of the diner, quite literally.

I had made tentative plans with Sam Spritzer a few weeks ago to meet and through some trials and tribulations, we managed to meet up on Saturday afternoon at a nearby mall! My first impression was that someone drank his milk when he was younger because I was prepared for his vibrant personality but I was not prepared for his height. I think I got a crick in my neck straining to look up at Jen and Sam :) Since Sam has bilateral cochlear implants, we decided for acoustic purposes to stick him in the middle. I stood on the right side so I could my implant on my left ear would catch whatever Jen and Sam said. Jen stood on the left side so her implant on her right ear would catch Sam and I would have said. It is so much simpler when I am around other cochlear implant users because they are aware of how to maximize the listening experience. If I were to frantically shuffle around anyone else, I get a questionable look. With everyone properly positioned, we walked around the mall and chatting about anything and everything. Not that I am short, I am more fun size then anything but I had to keep looking up at their lips and I couldn’t very well watch where I was going. I kept walking into tables and the like. I thought for my own personal safety that they should sit down. :)

I had such a great time with the two of them just shooting the breeze with Jen and Sam. I am looking forward to seeing him at the Nashville HLAA convention next June!

Part 2 up next :)

Kim, Robyn, Tina and Clifford the Big Red Dog...

2008-08-04T18:40:00.006-04:00

A couple weeks ago, I ran over to the Say What convention that was being held in Philadelphia, the city of brotherly love to meet Kim from Living With Questions, Robyn from The Ambling Rambler and Tina Childress, an audiologist with Advanced Bionics and a bilateral cochlear implant recipient. Kim and I were texting the day before we were going to meet and the last text before I fell asleep was that she wanted to go get another apple dumping. As I shuffled my feet towards the bedroom, I was staring at the screen of my blackberry, wondering the hell was an apple dumping. I made an executive decision to sleep on it.

The next morning, I was still just as puzzled about the apple dumping. I decided to ask my mom who is popular in the family for being a sponge of useless knowledge. I figure if anyone would know it would be she. Much to my surprise, she had no idea. With very limited knowledge of apple dumping, I forged ahead to Philadelphia.

Once I arrived at the hotel, I sent a text to Kim to let her know that I was standing guard at the door. :) A few moments later, Kim came out with open arms and a beautiful smile. We gave each other a big bone crushing hug. Her personality and cherubic giggle endeared her to me. We chatted back and forth until Robyn materialized next to us. The fair skinned Robyn came all the way from New Zealand for a month long vacation or holiday as she calls it. Since she came from abroad, she came with an accent, one that I never encountered before. I wasn't too worried, but I was surprised at how soft spoken she was but what really threw me for a loop was the lack of the enunciation of the R's. Apparently, New Zealanders does not pronounce their R's as we do here. Here is a sample conversation that we had.

Robyn: "....I'll meet you at the bah."
Kim : "The what?"
I thought she said back?
Robyn: "The baaah."
Kim and I focused on her lips.
Robyn: "The baaaaahr."

Ah hah, we figured it out. She said bar. :) Amazing how the subtle nuances of a language can present a wee bit of a challenge. :)

And off to the bar we went, which was more like a casual dining establishment. You didn't really think that we were going to throw a few back at eleven in the morning, did ya? We sat and chit chatted for a bit. Robyn joined us with moments to spare since she had brought tickets to go on a tour in the Museum of Art that was leaving shortly. I wasn't going to let her get away without posing for a couple pictures that was shot beautifully by Kim's friend, Lorne. Before she left, we made plans to meet up later on in the evening to spend a little more time together.

Shortly after Robyn left, Tina had arrived at once! We decided that lunch was a matter of utter importance. That is when Kim brought up the infamous apple dumping. This was my opening to make an inquiry to clarify the apple dumping. Kim enunciated her lips as she said, apple DUMPLING. I started to laugh as I told Tina and Kim that this entire time, I read her text as apple dumping. Tina started cracking up and made the most fitting comment, "Not only are you hearing impaired, you are visually impaired (brief pause) cognitively impaired." I was inclined to agree with everything she said! I whipped my blackberry out of my pocket and hunted down the text that Kim left to reread it and sure enough, it said apple dumpling.

However, I was right back to where I started, clueless. I asked Kim what was an apple dumpling. With signs of exuberance in her eyes, she told me that it was an apple baked in a pastry crust, drizzled with a cinnamon sugar sauce and it was served with ice cream or cream. After I gained five pounds just listening to her, I decided that we better get a move on to find the purple trolley otherwise known as the Phlash to go over to Reading Terminal Market. Armed with my handheld GPS (I have an innate fear of getting lost.)

We had no problem getting on the Phlash trolley. By the time, we got off the trolley I had visions of a cheesesteaks from Rick's Philly Steak, dancing in my head. I manage to get the cheesesteaks dancing in Tina's head. We had a bit of trouble finding Reading Terminal Market but my GPS got us there. Unbeknownst to us, it was the Ice Cream Festival that weekend there. It was a shame but my GPS couldn't find Rick's because we were nearly to slip into a diabetic coma if we didn't get a cheesesteak stat. We sacrificed by running to the first cheesesteak booth we saw. We managed to find a nice table in the back, away from most of the noise, which was very helpful for the lot of us.

After a wonderful lunch with the gals, we headed over to this little Amish booth to test drive an apple dumpling.. It was oh-so-delish. After the dumpling went down the hatch, Kim and I decided to head towards the loo for some bladder relief. Tina decided to gather some sweet stuff from the candy store. Right before I walked into the bathroom, out of the corner of my eye, I caught a glance of this fuzzy red dog as big as a house playing with some kids.

I couldn't remember the name of the dog, I thought it was Spot but I was wrong. I thought how cool would it be if we all got a picture with the big red dog. Sooooo, while I was standing in line waiting for the next available stall, I sent a text to Tina, obviously not even thinking on how peculiar it must have sounded to her.

At the most, four minutes have elapsed since I saw the six-foot fuzzy red dog. Once we finished doing our lady things, we started walking out and I'm talking about this big red dog and Tina and Kim are looking at me as if my magnet were on too tight. Tina asked me whether I read her reply to my text, which I didn't. I'm trying to dig my blackberry from the deep depths of the rabbit hole otherwise known as my purse while I was leading the pack out of the bathroom in search of the big red dog, but there was no big red dog in sight.

I glanced over my shoulder at Tina and Kim and their face said it all, I was obviously elected as the queen of the monkey people. Mind you, I am dead serious about seeing this six-foot fuzzy red dog. Without missing a beat, I stop some woman walking by and ask her point blank, "Have you seen a big red dog in here?" As Tina started laughing out loud, the woman clutched her purse to her side, took a couple steps back and exhibited some signs of uncomfortableness as she said, "No." I could clearly see that I weirded her out. I thanked her for her time and went to the spot where I last saw the dog, hoping to see some red fuzz from the costume to prove that there was a six-foot fuzzy red dog standing there. Much to my dismay, there was no red fuzz anywhere. I had the nerve to stand there and think to myself how strange that was because dogs always shed. :)

I finally pulled my blackberry out of my purse but I just clutched it in my hands because I had important matters to attend to, like track down a six-foot fuzzy red dog. Tina asked me whether I saw any pink elephants flying around too. Now I am just finding this whole situation just plain funny because this is such a classic situation that I get myself into, I see something that no one else does and as usual, I end up looking like the leader of the village idiots. However, it became a matter of principle that I had to find this six-foot fuzzy red dog. I decided to ask a man this time. I scouted the area for a man that looked as though he was hanging around in the area for the past five minutes and I found one, right by the loo with his arms crossed. It looked to me that he might be waiting for his wife. So, I walked right up to him and asked if he saw the big red dog anywhere and he said nope. Things were not looking good if I had to go to court and prove that I was sane.

I finally open up Tina's reply to my text and it said, "Wtf?" My thoughts exactly, wtf is this dog!? I thought the reply was appropriate and I'm glad I didn't open it up earlier because it wouldn't have packed quite the same punch. The gals appeased my insane curiosity by looking up and down the aisles for this dog but no avail, there was no six-foot fuzzy red dog anywhere. Did it run away to the nearest fire hydrant or something? The six-foot fuzzy red dog didn't have a name until Tina mentioned the name Clifford the big red dog. She's a mom; it’s her job to know the name of popular children books. :) What do I know? I'm pushing 30 here, the last time I was a kid was... and lets not get into that.

Anyhoo, I didn't know what else to do, pass out flyers for a missing six-foot fuzzy red dog or walking around shouting CLIFFORD hoping he would come when he was called. We started walking towards the exit of the market when I had to ask one more person. It was just a matter of principle. I asked a woman that was a spitting image of Aunt Jemima if SHE had seen the six-foot fuzzy red dog. She said that she has in fact seen Clifford the big red dog and pointed towards the back, right where I spotted the damn dog in the first place! I lunged with such excitement at the girls and let out a "Ah hah! Did you hear that?! Aunt Jemima over there said Clifford the big red dog was here! Ah hah, told you!" However, I gathered that neither one of them felt that Aunt Jemima was a credible witness.

It wasn't until a week later when I got a comment on Facebook from Tina, with a link to a news article about the ice cream festival at Reading Terminal Market featuring...

Clifford the Big Red Dog. :)

I was telling them I'm not nuts :) but I am good for entertainment.

After the whole red dog ordeal, we did a little retail therapy and headed back to the convention by the way of the Phlash which took a little longer than we anticipated. Kim and Tina went to their rooms to get ready for their dinner and I jumped at the chance to spend some more time with Robyn. I'm so glad that I got a chance to spend some more time with her because she is just simply a delight to be around. When the dinner was about to start, it was time for me to bid adieu. It was sad to have to say goodbye since being around all of them was like a breath of fresh air.

A moment on the NYC Subway

2008-07-27T09:27:00.008-04:00

Here I am, completely placing my faith on mass transportation to dump me approximately an hour and a half north in one piece, right into the Big Apple. A city that I have navigated at least a hundred times before. A city full of seemingly possessed cabbies complete with a touch screen GPS for our viewing pleasure. A city where you can get a massage where they whack you in the back with branches from a birch tree, takes in an over priced burlesque show and visit a Bedouin coffeehouse for a cup of the strongest java ever and a pipe full of fruity flavored Hookah all in the same night. You just cannot get this kind of action in the suburbs.

My cochlear implant just can't get this kind of stimulation in the suburbs either. New York is complete with never-ending supply of auditory stimulation from the hustle and bustle of eight million people with an influx of lord knows how many more. After two hours of being encapsulated in the good graces of the NJ Transit bus, they finally unleashed the fury of passengers in Port Authority of New York. I have been here before. The familiar smell of carbon dioxide and rotten eggs infiltrated my nostrils. I took a deep breath and sighed as I thought, "Ahh, good old New York hasn't changed it scent one bit." I hopped down the stairs, hugging the right side of the rail as I skillfully navigated myself towards the subway entrance. One needs skillful navigation to find the damn subway entrance but since I have graced just about every subway line from the 1 to the 7, the A to the G and all the others in between, I consider myself an intermediary expert in the art of understanding subway paths.

After swiping my MetroCard through the subway turnstile, I make my way through the underground sauna to catch the R train heading downtown. As I started my sweaty descent down the stairs to the subway platform, the irony of perfect timing brought a smile to my face as the R train comes rolling in with the hundreds of passengers beginning their evening commute home. I clutched my purse closely to my side and then with one swift step, I entered through the double doors of the train and scouted for an empty seat. With no such luck, I grabbed a hold the nearest pole and prepared my footing for jerky acceleration to the next stop.

Amidst the slight chatter, stench of massive BO and the metal rattling over every rail, I heard, "34th Street - Herald Square, Next stop - 28th Street"

I'm standing there perplexed, did I really just hear that? I turnaround to this young Asian girl when they started announcing the stops. She replies, "No speakie English." I apologized for bothering her. Then out of the corner of my eye, I felt this intense chemistry towards a very attractive, clean shaven man with piercing blue eyes in a grey suit with a pale blue shirt. I love a man in a suit. I figured what the hey, I tapped his shoulder and smiled coyly as I asked him when they started announcing the stops. He smiled revealing the most beautiful smile and chiseled jaw line. I decided I was in love right then and there. I had to ask him to repeat himself, not because I couldn't hear him but I was so smitten with him. He spoke with the most beautiful voice that I have ever heard, deep, smooth, and dreamy. He said, "They always have." Those three little words are forever etched in my memory. I managed to utter a thank you. My mind is running a thousand clever conversational icebreakers, and every single one of them was hindered by my timidness. He got off at the next stop. I watched my future husband walked away only to be embraced by the arms of another man. Figures, he's gay.

After I recovered from the heartbreak of my minute long unilateral love affair, I realized how astounded I was to be hearing all the stops being called out. I have never heard them! It answered so many questions of how my friends knew well ahead of time when to get off. I have cochlear implant moments every single day, but this moment was truly gratifying.

I get off Rectory Place and head towards Ground Zero to say a little prayer in memory of those that lost their lives on 9-11. After that, I walked back up towards Broadway with a little help from Google Maps application on my Blackberry Curve, I finally arrived at my destination ─ an hour and a half late. I rushed up the elevator and walked into the room. There was lovely Tina Childress standing there smiling. She asked me whether I was okay. I said, "I'm fine." I was more then fine. I was on a high about hearing the subway conductor announce the stops. There is something about the element of surprise that can really take you aback when you discover that you can hear something ─ that has always been there but not for you.

Here is others that are well on their way in having their own moments:

David went in this past Wednesday to have his other ear done. He is officially bilateral buddy! David is from Canada and they have universal health care, so bilateral recipients are rare. He really lucked out. However, because David had bacterial meningitis and the side effects can show up months or years later apparently, he had a thin membrane grow over a couple of electrodes of his first implant. Instead of 16, he is down to 11 which is fine because you only need 8 working electrodes (no matter the brand). With his past surgery, the surgeon was only able to get in 11 electrodes in due to ossification which is yet another side effect of bacterial meningitis. Please join me in wishing him nothing but the best for his upcoming activation! I love this mans attitude.

Deb, who is the owner of the CI-Clarion II Yahoo Group, had revision surgery this past Monday to replace a very old C1 implant with the latest Advanced Bionic HiRes90k implant. They had to go through the original incision, ouch! She came through like a real trooper after a six hour surgery! There weren't able to get all of the electrodes due to ossification, but she suspected that they wouldn't be able to going into the surgery. She will be activated August 4th (i think) and she will be back to being bilateral. :)

Shari has finally had her surgery this past Wednesday after being denied by United Healthcare whom is well known for denying CI surgeries. I'm glad to see they are coming around thanks to the persistence of Let Them Hear Foundation. Shari has Ushers Type 2 and a hearing loss. She actually had the hearing loss before she had Ushers. She seems to be coming along smoothly! I'm so happy for her!

Wendi had her simultaneous bilateral cochlear implant surgery this past Tuesday. She is only one of three people, Valerie being one, that I know that has opted to have them both done at the same time. Her surgery took only 2.5 HOURS for BOTH ears! That is it! It took 3 hours for one of mine! However, I am glad to report that she has no dizziness, a little bout of nauseousness and a little bit of taste disturbance. Otherwise, her recovery is a dream! I think I want her doctor next. :) Her activation is coming up on August 20th! I feel a special connection with her because our hearing loss history is so very similar that it is scary. She didn't lose her hearing altogether during a nose job surgery like I did but everything else lines up perfectly. I have a feeling she is going to do fantastic.

Karen had her surgery on Tuesday as well, just one ear though. Karen is a Type 1 Diabetic with an insulin pump. I was very happy from Laurie that she came through with flying colors. She was a little dizzy and nauseous but all of the electrodes are in! She is having a tough time recuperating but her darling husband is taking wonderful care of her! I'm not sure when her activation is. I'm so excited for her!

Amanda had her surgery on July 14th and her activation is August 12th. She is a sweet 14 year old girl that has been fighting for a cochlear implant for a very long time. She has never heard before in her life. She is going to find out just how noisy the world. Her stepmother is a former teacher of the deaf and does a wonderful job of taking videos of Amanda and captioning them. I can't wait to see how she reacts!

Jen was supposed to have her surgery last week but they had to post pone it to August 1st which is next Friday! I am sure she will be glad to get it done and over with.

Its been pretty busy around here! Gosh! :)

Walk 4 Hearing Fundraiser

2008-07-21T14:18:00.008-04:00

On October 18th of this year, I will be dusting my sneakers off to go walking 5k for the Garden State, Walk4Hearing sponsored by Hearing Loss Association of America, a non-profit corporation, whose mission is to open the world of communication to people with hearing loss through information, education, advocacy, and support. The Walk4Hearing purpose is to increase awareness about the causes and consequences of hearing loss and to raise funds to provide information and support for people with hearing loss. The Hearing Loss Association of America depends on generous volunteers to raise funds and awareness at each of our Walk4Hearing sites.

I am asking you to help support me in this important project by contributing generously. For information about this volunteer fundraiser and its programs, you can visit http://www.walk4hearing.org/ and to make a donation online, please visit my personal page.

It is faster and easier than ever to support this great cause by making your tax-deductible donation online using the link below. If you would prefer, you can send your contribution by mail, please shoot me an email that is located on the right hand side just under my activation video.

Come join us!

Kickoff Celebration

Sunday, September 7, 2008
2:00 PM to 4:00 PM
Montclair State University
University Hall - 7th Floor Conference Center
1 Normal Avenue
Montclair, New Jersey
(click for directions)

Garden State, Walk4Hearing event

Saturday, October 18th, 2008
Registration - 9:00am
Walk starts - 10:00am
Mercer County Park
West Windsor, NJ
(West Picnic Area
(click for directions)

Thank you!

Bluetooth Headset with your Cochlear Implant

2008-07-15T11:33:00.014-04:00

Did you know that you use can a Bluetooth wireless headset with your cochlear implant? You know those little things that people commonly mistake cochlear implants for? A bunch of idiots even steal cochlear implants off children because they look so much like Bluetooth headsets and that goes to say a lot about the caliber of our thieves in the US.

Well, I never thought I could use that until the morning of June 12th at approximately 10:30 in the morning when I took the workshop, “Bluetooth and You” presented by the very lovely Tina Childress, who is an audiologist at Advanced Bionics. She is a late deafened bilateral cochlear implant recipient as well. It was already a standing room event when Laurie and I had arrived with people hanging out in the hallway, standing on their tippy toes and craning their necks to find out what is up with that sexy digital wireless protocol called Bluetooth. With sheer determination and our pearly white smiles, Laurie and I swiftly moved through the audience and positioned ourselves - flat against the wall of Carson Room #3.

But wait, what is Bluetooth? It is a way for electrical components to talk to one another − wirelessly. For example, let us take your standard run of the mill television remote control that used infrared technology, point that bad boy at the television, and change the channel. Heck, go crazy use any remote but providing that you have working batteries :) the channel should change demonstrating an example of how electrical components talk to one another wirelessly. Bluetooth is just another way for us to cut the cord, so to speak. Bluetooth has a limited range of around thirty feet. You can use Bluetooth to communicate with all sorts of devices including cell phones, hearing aids and headsets, earpieces, PCs and printers, cars, digital cameras and GPS’s. You can get the gist that it is getting popular. :) Back to the presentation...

Once the presentation got underway, I watched Tina as she slipped a wireless Bluetooth headset right next to her cochlear implant. If my eyes were any wider, I think they would have fallen out of my head because I was blown away that a Bluetooth headset, a device that any normal hearing person could use was snuggling right next to Tina’s cochlear implant. I walked into that workshop with over 24 years of conventional hearing aid experience that led me to think I could never use one a Bluetooth headset. That was then and this is now.

Now Tina, like myself, has an Advanced Bionic cochlear implant and they are the only one cochlear implant company that has a T-Mic microphone auxillary ear hook.This is not to be confused with T-Coil that is just a small wire that can pick up electromagnetic signals from a telephone, TV, microphone and FM systems. The T-Mic is an ear hook with a microphone at the end that is designed to be placed in front of the ear canal opening and it takes advantage of the natural curvature of the ear to collect sounds as you can see here.

With this T-Mic technology, I can pick up a phone and place it right over my ear, like everyone else and after 24 years of fiddling with T-Coil hearing aids, I was more than happy that I didn’t have to try to find that awkward T-Coil spot anymore. But, I couldn’t understand how it worked because most of the Bluetooth headsets I've seen are ear bud style meaning they go in the ear canal that look like this.
With the T-Mic, you can use the ear buds but since the sound is being driven into the ear itself and away from the T-Mic, you would hear it but not as clear because the sound is being pumped into an ear canal and that don't help because well, we can't hear that way :) To fully utilize the benefit of T-Mic, sound had to be directed right in front of it. I was determined to find out the trick to this whole Bluetooth headset/Cochlear Implant business. So I did what any inquisitive deaf technological geek would do, I cornered Tina :) who was more then happy to let me test drive her Bluetooth headset. Once I saw the style of the Bluetooth headset, I went “Ah-hah!” It was flat and then it all made sense to me.

After I listened to the weather from Tina’s Bluetooth headset, I was sold. I decided that once I got back to New Jersey that by the way has a $250 fine if you are caught talking on a cell phone without a hands-free device, I was going to get me one. After some comparison shopping, I picked up this little gem of a headset from Motorola, the H700 for $40 bucks (see picture below). If you take a look at the top right picture, you will see that it is flat so that it fits right over the T-Mic which is exactly what you want.
This is the kind of headset you want to get if you want to start looking like one of those corporate yuppies exhibiting symptoms of bipolar disorder while rushing to Starbucks for a venti low fat vanilla with nonfat whipped cream, two pumps of caramel, and one pump of vanilla at 145-degrees soy latte light with soy milk and a shot of cinnamon! I’m sure you’ve seen them. :)

Now since my entire body is in proportion, my ears are big just like my butt and it can handle something else hanging off my ears. However, I cannot wear my glasses along with my cochlear implant and blue tooth headset. It has to be one or the other, the glasses or the headset. If you got teeny tiny ears, then this might be a better alternative for you, for under a hundred $130 bucks, the Noizfree Beetle Bluetooth headset available with one or two earhooks. It works with all T-Coil equipped behind the ear hearing aids and cochlear implants. You can use these with Bluetooth enabled cellphones, computers and listening systems.
Or you just might want to cut the coils all together and go with the Artone Bluetooth neckloop that works with all T-Coil equipped hearing aids and cochlear implants as well as Bluetooth enabled cellphones and computers! The only downside is that it cost $165 bucks.
This particular neckloop will help people that have bilateral hearing aids or cochlear implants with T-Coil activated. They can just flip their devices to T-Coil and listen to a phone call or streaming music from their computer or Ipod.

You can use for more then just talking on the phone, if you have a MacBook, PC that comes with Bluetooth built in or a Bluetooth USB drive, you can pair your headset with your computer and listen to music or audiobooks. I was jamming to my Itunes playlist all weekend via my Motorola H700 Bluetooth headset. You know what else you can do? You can purchase a Bluetooth adapter for Ipods that will enable you to listen to music or an audiobook from your Ipod.

I bid you all good toothing.

Advanced Bionic settles with the FDA

2008-07-09T13:31:00.008-04:00

I wanted to share with you all a copy of the press release from Advanced Bionic CEO Jeff Greiner that was posted on HearingJourney.com

Dear Patients and Professionals:

Today, Advanced Bionics agreed to settle a matter with the U.S. Food & Drug Administration (FDA), resulting from a decision we made in 2003. That decision concerned a determination that no formal FDA submission was needed when we added a new vendor (Vendor B, later terminated in March 2006) to our manufacturing operation. Four years later, in 2007, the FDA filed an administrative complaint against us stating the FDA's belief that a formal submission should have been filed. We responded to the Agency, pointing out that it had already approved both vendors when it approved the system.

While we do not agree with the FDA, we do believe that accepting its terms is in the best interest of our patients, our company and our need for a long standing relationship with the Agency. So, we have decided to settle the matter, with the company paying 1.1 million dollars and me, as CEO, paying 75 thousand dollars.

Over the years, we have increased our focus on the reliability of our entire implant system. At present, our internal device (Vendor A) has a 2 ½ year CSR of 99.1%, and our external product durability leads the industry. That being said, we expect that the quality of our products will only get better in the years to come.

As we move forward, we are stronger than at any point in our history: singularly focused on cochlear implants, well funded, possessing better leadership in key positions, and having a strategic plan built around patient care.

We very much look forward to continuing our partnership in this community. Please call me if you have any questions about these or other matters.

Very sincerely,

Jeff Greiner,
President and Co-CEO

HLAA Convention Recap #3

2008-07-07T18:25:00.009-04:00

With closing time approaching the Exhibit Hall, I managed to catch Laurie and Jennifer as they were just leaving the state leaders meeting and from the looks upon their face, nothing was accomplished. We started to gravitate to the opening session featuring the keynote speaker, Ollie Cantos. First glance, the Grand Ballroom featured the most coveted crystal chandeliers and sculpted ceiling niches that this east coaster has even seen. There were so many different layers of elegance to this room from the rich brocade carpentry to refined look of fabric upon the walls. Since my eyes are more apt to notice details in the distance, especially when you can't miss them, I noticed there was two huge screens, one was for the CART which stands for Communication Access Real time Translation. The other screen was for a power point presentation. There was a sign language interpretor bubbling around the stage as well. I noticed that the sign language interpretors out there all wore a black shirt which deviates from New Jersey interpretors, ours just slap on any old shirt of any color.

Mike, Laurie, Jennifer, and I strolled up the aisle to some grab seats as close as we could to the stage, we noticed a never-ending sea of chairs. We struck gold because once we managed to get seats in the second row right in front of the CART screen. As the hour drew closer to the commencement of open session, the sea of chairs was being replaced with people that suffer from a hearing loss, just as I do. I was not alone here. The feeling of being a minority was replaced with a signifying impression that I was among a group where people suffering from a hearing loss was a majority.

Barbara Kelly kicked off the opening session welcoming the lot of us. She introduced Brenda Battat, executive director of the HLAA and Anne Pope, President of the HLAA Board of Trustees who extended their wholesome greeting and salutations. Barbara completely blindsided Dr. Mark Ross with a surprise, the Lifetime Achievement Award. I quote Barbara when she called him the "Father of Audiology." You can read more about Dr. Ross here. When I first started reading the Hearing Loss magazine, I had read a few of his articles showcasing his expertise as an audiologist and a consumer. The May/June magazine that I appeared in, Dr. Ross wrote an article called, "Listening to Music through a Cochlear Implant." I have to admit when I was reading the other articles, most of contributors had three lovely little letters attached to the end of their names such as PhD or ESQ and I have the bookkeeper. :) At least I am in good company!

Now came for the pièce de résistance of the opening session, Mr. Ollegario "Ollie" D. Cantos VII, ESQ. (there are those three little letters again!) I am a little rusty with my Roman numerals but I think that VII means seven. Ollie is the Special Counsel to the Assistant Attorney General for Civil Rights in the U.S. Department of Justice. His status of special counsel makes him one of the highest placed persons with a disability in the ranks of the federal government today. What kind of disability does he have? He was born blind. The status and the respect that he has achieved in his 37 years are truly remarkable. If you do a Google search on him, you will see a list a mile long of his accomplishments, awards, marathons. He is definitely someone you would want to rub elbows with. :)

When Barbara introduced him to the audience, we watched him make his way to the stage utilizing his white cane with such skill. Once he took his place behind the podium and began his speech, we were mesmerized with his careful and powerful dictation of motivational quips. He emphasized that there are several disability rights laws which he had no problem citing but they end up being buried and because of that, they lack in the enforcement. He stressed that it is dubiously important that those of us living with a hearing loss must reach out make the U.S. Department of Justice HEAR US to continue to enhance disability rights awareness and enforcement. He proved that he is downright serious about reaching out to us because he provided the audience with his email address and telephone number. This provided us with a way of cutting through the red tape and getting the answers that we need from the tippy top branch of government. He stressed the importance of "networking" with one another. He went one step further and said that he is staying for the entire convention he wants to talk to each and every single of us there. He wanted to hear what we had to say. When he was done talking, I think it is safe to say that he left a profound impact on us and was ready to put his tips to good use.

As he made his way to the stairs, he became dangerously close to a part of the stage that didn't have the steps. I think the entire audience leaned forward and gasped in unison. Jennifer, Laurie, and I stretched our arms out as if they were going to prevent him from taking another step forward. Next thing we see is Barbara scrambling up the steps to guide him in the right direction. Whew, crisis averted!

On Saturday, Ollie gave a workshop called, "The ADA and YOU." This was more like a lets pick Ollie's brain session. It was a full house, and questions were being fired left and right and he answered every single one of them. I've come to realize in the workshop that the issues that people with a hearing loss face with receiving simple accommodations to enable them to perform their job to the best of their abilities are very real and beyond frustrating. I knew the man was resourceful, but I had no idea that he was a walking encyclopedia and address book! This was a man that you had to develop nicknames for, Jennifer called him WikiOllie and I call him Olliepedia. The man is like the blind Einstein! Even if he weren't blind, I would still be blown away just the same by the ease of how he can just ramble off email address's telephone numbers, cites statues, and cases in milliseconds. We left with a whole sheet full of contacts. I have shared some of them with you in the bottom of this post.

Back to opening session on Thursday, we were ready to network. We were walking around networking and I noticed a man that looked as though he might have been born in my generation. I must say, I felt as though I was the youngest one there which wasn't a bad thing but I welcomed anyone that knows what wax on, wax off meant. :) Turns out his name is Zac from Denver, Colorado who is very easy on the eyes. He is the vice-president of his local HLAA chapter. We invited him to go to dinner at Johnny Rocket's with us and since we didn't scare him too much, he stuck around. :)

Left to right: Zac, Yours Truly, Jennifer, Laurie and Mike

While we were eating dinner, Jennifer decided to be mischievous and hide Mike's blackberry in her back pocket. By the time, that Mike realized that his third arm (blackberry) he started grilling us for its whereabouts. I had no idea that Jennifer cleverly disguised it until she miraculously produced Mike's blackberry from her back pocket. I finished the final bite of sandwich when Mike said to me, "Why you call me?" I looked at him as if he had three heads. I motioned his attention to my cell phone that was being suspended in midair atop a salt shaker. Unless my cell phone has a mind of it own, I didn't call him. I looked at it to appease him. It showed that I had one miss call and that miss call was Mike. So I fired back with, "You called me!" Well, it hit me and I started laughing uncontrollably, hysterically, tears streaming down my face and gasping for air. Since my name starts with A, it was a logical assumption that I might be the first entry in his address book. Somehow they managed to understand my unintelligible gibberish when I concluded, my dear readers that Jennifer's dereirre somehow navigated, quite skillfully might I add, through Mike's address book and rang my ass up. Talk about talent. :) We laughed so hard that our sides hurt.

After dinner, we all scrambled to our designated hotel rooms to get ready for BOWLING! I am not a bowler but give me a glass of rum and coke and I'll throw anything anywhere you want. :) I couldn't even recall the last time I went bowling. Laurie, Debra, Kim, and I formed a team, if you want to call it that. Jennifer opted out because she just had a manicure done. So did I but I'm a rebel, so what if I broke a nail. That was before I actually broke a nail. :) Deb was the bowler extraordinaire and tried teaching me some tips and trick. I applaud her efforts because I totally sucked, but I must say I was absolutely surprised at how horrible I was doing because I do so well on the Wii. :) She managed to get one really great throw out of me and then I bombed since I broke my nail. :) I even applied chapstick to my thumb!

Cowabowlinga dudes!

I couldn't even remember the rules because if you got a split you got a prize. I think when I had my cochlear implant surgery some of the bowling knowledge leaked out. As expected, I got a split and I had no idea I had to run to the booth and claim my prize. Everyone is yelling to go run and go get the prize and I hadn't the faintest idea of what the hell they were talking about. They were all pointing at this guy in a crazy hat and I walked gingerly in his direction. Kim came up behind me and grabbed my hand and kicked the walk up a notch. I claimed my prize and had my picture taken, again. My prize was plastic bowling ball and pin set. Was someone trying to tell me to practice? :) I walked back to my aisle thinking to myself what the hell am I going to do with this and apparently my face read the same thing. I thought that I could practice by setting up a mini bowling alley in the hotel room but in the end I gave it to housekeeping to give to one of their kids.

Then I decided to change my bowling technique and I wasn't doing too shabbily.

My expert technique.

Then I noticed Ollie was a couple of lanes down and I watched him get two strikes in a row. I took notice of my score - 8 and I walked down to see his score.

A blind guy royally beat me in bowling.

Sigh... to be continued!

Links:

Email Ollie Cantos at Ollie.Cantos@usdoj.gov

Equal Employment Opportunity Commission

Section 504 of the Rehabilitation Act of 1973 - prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance, in Federal employment, and in the employment practices of Federal contractors.

Job Accommodation Network

National Counsel on Disability Youth Advisory Committee

National Youth Leadership Network

Office of Disability Employment Policy

Institute Educational Leadership

US Business Leadership Network

Americans with Disabilities Act

Google Division of Vocational Rehab – Provides services that enable individuals with disabilities to find jobs

Disability 101 - Discusses various disability benefits

Technology Act of 2004 – Support programs of grants to States to address the assistive technology needs of individuals with disabilities, and for other purposes.

Disability Abuse

HLAA Convention Recap #2

2008-07-05T22:14:00.009-04:00

*I N H A L E S*

*E X H A L E S*

As the sun rose from the east, the rogue Nevada rays found their way through my wafer thin eyelids somewhere around six in the morning. I bobbed up out of my bed within five seconds because I wanted to waste not a moment here! Laurie was practically ready when I tore the sheets off. Jennifer was still trying to find out which way was up, but she was not letting go of the coffee mug. I decided to hop into the shower with my eyes closed in fear that I would let out a blood curdling scream. I worked some mojo on the ladies hair and kicked up the mojo on my face a notch :) As it would turn out, all three of us were ready in no time at all and we officially started the HLAA 2008 Convention.

Jennifer ran downstairs before Laurie and I got ourselves to the elevator. It did not take long to have my firsthand experience of how bilateral CI's have better localization because Laurie had a much easier time of being able to tell which elevator opened up. Apparently they "dinged." I'll be damned if they dinged because I couldn't hear it. It didn't take any time at all for a game of "lets find the elevator" to became a running joke among us. The bilateral users beat us unilateral users every time.

After marveling over Laurie's localization skills, we met back up with Jennifer and the Nashville crew. We got some coffee and breakfast before we went to register for the convention. Of course, we had to take pictures since there were many cameras swarming all around us. Aside from the lights flashing and twinkle stars floating in front of me, there was a certain honorary photographer from Kentucky that got goosed. That left us hysterical laughing. Shortly after that, we giggled our way to register for the convention and I met Cheryl Heppner and her hearing dog Galaxy. Cheryl is the convention reporter that you see here as well as the executive director for the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons.

There, we got a snazzy blue bag to hold all our paperwork, schedule, information, and a huge name tag connected to a lanyard. Something told me there would not be a case of mistaken identity at this convention. No sirree, not here. I loved wearing name tags because that took the stress right out of introducing yourself or vice versa. I can't tell you how often I have screwed up names in those critical greeting moments that could make or break a future relationship. I want to show an example by introducing you all to my imaginary pal, Jake.

"Hi, I'm Abbie and you are?"
"Hi Abbie! I'm Jake."
"Hank?"
"No, Jake."
"Mike?"
"No, Jaaake."
"Frank?"
"J - A - K - E."
"Oh! Jake. Nice to meet you!"

I have had far too many conversations like this but if Jake wore a name tag, BOOM, instant karma! The name tags won me over in a big way. :)

The exhibit hall was next on our list and boy, was I unprepared. This was Geeks-R-Us for the likes of me. I was overwhelmed with all the booths, gadgets, and toys for me to fool around with and buttons to press. There was something for everyone! Just check out this list of exhibitors!

Advanced Bionics Corporation - Cochlear Implant company. For those who do not know, I have Advanced Bionics.

Alternative Communication Services

American Academy of Audiology

American Speech and Hearing Association

Alliance for Telecommunication Industry Solution (ATIS)

Audient

Canine Companions for Independence - Unbelievable program!

Clarity, a division of Plantronics and leading supplier of amplified telephones, notification systems, assistive listening devices, and other communications devices for the Hard of Hearing and Deaf communities.

Cochlear Americas - Cochlear Implant company

Comfort Audio Inc

Costco - They sell hearing aid batteries, in bulk.

Consumer Electronic Association

CSDVRS

Dry and Store - I own one and I strongly suggest this if you live in a humid climate.

Eye Movement Integration: Theory and Practice

Fanstel Corp

FCC

Gallaudet Leadership Institute - A program to improve the quality of deaf professionals, leaders, consumers, parents, and community advocates in deaf-centric organizations.

GoAmerica

Hamilton Captel

HARC Mercantile LTD. - Assistive listening devices

Harris Communications

Hearingimpaired.net

Lifetone

Med El Corporation - Cochlear Implant company

Mobile Ear

National Technical Institute for the Deaf (NTID)

Oticon - Manufacturer of hearing aids or the politically correct term is hearing instruments.

Panasonic - They have the best cordless phone that I have ever used in my life.

Phonak - Manufacturer of hearing instruments.

Quick Caption - Provides real-time captioning, video captioning, transcription services and REMOTE real-time captioning.

sCOMM - Provides UbiDuo™, a portable, wireless, battery powered stand-alone communication device that facilitates a simultaneous face to face communication by two displays and two keyboards.

Siemens Hearing Instruments - Manufacturer of hearing instruments.

Silent Call Communications - Provides deaf alerting systems smoke detectors for the deaf blind alerting devices deaf-blind electronics.

Sorenson Communications - Video Relay provider

Sound Clarity - A site very similar to Harris Communication.

Sprint Relay and Sprint WebCapTel - These guys get two thumbs up from me! They provide Relay and online telephone captioning.

Teltex - aka Serene Innovations - Specializes in amplified phones, TTY's, unique notification and Smoke Detection Systems.

T-Mobile USA - Wireless phone provider with deaf and hard of hearing plans.

Telecommunications Industry Association (TIA) - Leading trade association involved in telecommunications, broadband, mobile wireless, information technology, networks, cable, satellite, unified communications, emergency communications, and the greening of technology.

Ultratec Inc - CapTel phone

Verizon - Verizon center for solutions for customers for disabilities. I happen to have one solution: Lower your prices.

Each exhibitor will be updated with a description
just as soon as I can remember who is who!

You can see how that kept me busy for quite some time. I didn't have T-Coil activated but that didn't stop me from ogling blackberries and trying out the different gadgets. I was meeting so many people including the very lovely Barbara Kelly who is the deputy executive director and editor of the HLAA magazine who is a delightful and wonderful human being. I was so eager to start putting a face with all the wonderful people that I have been in contact with. I found myself in a constant flux of exchanging signs, hugs, or business cards with others. I can't remember the last time that I talked that much in a twenty-four-hour period. I talked so much that my throat became parched, but there is nothing like pink lemonade cure that :) Later on, Laurie and Jennifer decided to attend the HLAA's state chapter meeting and I was having way too much fun being a social little butterfly, so I opted to flutter around the exhibit hall some more until opening session....

To be continued!

NJ ASL Expo this Saturday!

2008-06-27T08:52:00.003-04:00

I have a full weekend...again :) I'm going to the ASL Expo in town on Saturday.

NEW JERSEY DEAF EXPOSITION
Saturday, JUNE 28, 2008
10 A.M. TO 6 P.M. at
RITACCO CENTER
1245 Old Freehold Road, Toms River, New Jersey
FREE Admission & Parking
EXHIBITS Open From 10 am to 5 pm
Professional Entertainment Show starts at 3 pm till 5 pm

Then Sunday, I am singlehandedly taking on the task eradicating my entire house and yard of every six to eight legged insect, winged or not, that even thinks about crawling near the vicinity of my humble abode. I am not playing around anymore! Next time I post, I will be finishing up the HLAA convention in a completely insect-free zone.

Have a great weekend. : )

HLAA Convention Recap #1

2008-06-22T02:28:00.006-04:00

The hotel shuttle bus whisked me away from the landing field of hell to the magnificent Grand Sierra Hotel in Reno, Nevada. On the way to the hotel, I was trying to text to Jennifer, Laurie, Mike and Phyliss all the while trying to hold a verbal conversation. It is a miracle in itself in how I remained intelligible through my texting. At first glance of the hotel, I have to say I was impressed with my new digs for the next four days because the picture on the website does not do the soaring glass architecture any justice. When the shuttle pulled up to the hotel, I started looking around for Laurie who I knew was near the front entrance. Then I saw a woman with a bright yellow shirt and a colorful necklace make her out of the hotel. My eyes were fixated on the woman with exquisite taste in jewelry and with every step she took, her big brown beautiful doe eyes came into focus. The second she smiled, I knew that it was the same woman in the picture of her blog. We hugged and hugged and hugged. We hugged so much that we squeezed the thought that I still had luggage to grab right out of my head. :)

I was just so happy to see her because this reaffirmed why i wanted to come to Reno to meet people just like her. Especially since for the past 17 hours I thought someone was going to have to peel me off a side of a mountain. :) I grabbed my luggage and began our way to check in to the hotel with Laurie by my side. Once I got my room key, we just started to gab on our way to the elevator. We hop on an elevator and she pressed the button for the 17th floor but it would not light up. She became perplexed and pushed it again but still nothing. She pushed a button to another floor and it lit up. She went back to the 17th floor button and nothing. I could do nothing but laugh because I contributed it to the irony that the button to our floor would not light up to my fantastic stroke of luck that I was having that day. I laughed so hard that I fell back into the chair that was conveniently placed in the corner of the elevator. She looked to me clearly seeing the irony of the entire situation and started laughing too. She decided to push the button on the other side of the elevator door and wouldn't you know joe? The 17th floor button lit up and we were up and up and away ─ laughing our tail ends off.

The next scene had Laurie and I standing in front of our hotel room. I got so excited that I started shaking. She swipes the card and opens the door and I gasped. I gasped at the sheer sophistication that the room was adorned in; the decor, the color, the ambiance lighting. It was all very Wang ─ Vera Wang that is. Music played in the background. Okay, I lied. It was my tinnitus. :) I peeked into the bathroom and it was all marble, mirrors and mood lighting. My eyes got wider as I took one look at the all glass shower stall and immediately thought how novel to have one of them in our suite. Why you ask? That is simple because seeing me naked first thing in the morning is the next best thing to coffee. One look at me in my birthday suit can scare a buzzard off a shit wagon.

Laurie decided to let me rest and relax for a few by joining some other HLAA members for dinner. I had this insatiable desire to wash off the LA smog and stir-fry stench of me but I wanted to stop and take a moment to appreciate the view that my wall-to-wall window had to offer. I watched the sun start to make its glowing descent silhouetting the rolling hills. A snappy little jingle from Fresh Prince of Bel Air popped into my head and this time, it was not my tinnitus.

I pulled up to the house at bout seven or eight,

I yelled to the cabbie 'Yo home, smell ya later!'

I looked at my kingdom,

I was finally there!

To sit on my throne as the prince(ss) of Bel-Air!

I chuckle to myself, I had been up for just about forty hours and I had no plans on slowing down any time soon. How could I? I was so overjoyed that I made it to Reno and I have my two feet firmly planted on good ol' solid planet earth. :) I would have said over the moon but I want to steer away from anything that has to do with ascension. I started to feel a little sluggish with my 40+ logged but I knew as soon as I got ready that there would a medium iced latte from Starbucks with my name on it downstairs. I hopped in the shower and the reflection in the mirror did a wonderful job of waking me up.

And just in the nick of time, Laurie came back to the room just as I finished getting ready. We headed down to Starbucks to get me a ~~caffeine IV~~ iced latte and wait for the entire Advanced Bionics group to come through. Unbeknownst to us, they were all waiting out in front of Starbucks while Laurie and I sat in this quaint little seating area. After ten minutes of them standing out there, Jennifer inquired about our whereabouts via text and we finally found each other. The first person I saw was Jennifer who was six feet of pure southern joy! Her unbelievable and endearing personality coupled with genuinely beautiful smile was so welcoming in this city of strangers. This was the first time we met in person but it didn't feel that way, it was like welcoming an old friend home. We hit it off fantastically and this was only the first night. :)

Then came, Mike Royer who is another CI user who is downright hysterical and a pretty sensitive and emotional guy. The flood of people just kept coming; Gloria Garner, Tina Childress, Wayne Roorda, Sheila Adams, Debra McClendon and her boyfriend Brian, Judy Wagner, Kim Brownen and her husband Michael and Nanci Linke-Ellis,. I was in contact with just about every single one of these people all through out my cochlear implant research and evaluation. The time that they spent answering any of my questions or concerns is wholeheartedly appreciated and meeting them meant the world to me. I think I mentioned everyone that I met that night but if I have forgotten anyone, please shoot me an email!

We were getting rowdy in Starbucks and Tina had a bright idea to move to a table by the bar! Yeah, my kind of woman! :) I must have told my first flight story a dozen times. By the sixth time, I had the worlds smallest Appletini in my hand and I was starting to find the humor in my story. For the biggest little city in the whole world, Reno's martini glasses are pretty damn small albeit, it did the trick of calming me down. I must say they made me appreciate New Jersey's carafe size martini glasses :) I got to sign my first autograph and I had no idea what to say. It must have taken me five minutes to come up with something witty for Kim's magazine. I am clearly not used to this autograph signing business. More and more people kept joining in during the night a'chittin' and a'chattin'.

As the night wore on, the group started to thin out and gravitate to their hotel rooms. Mike's bright blue CI cap must have been knocked off somehow because I noticed it was nestled close to the stem of my martini glass. That is when I decided to be mischievous. I snapped a picture of the cap and sent it to Mike’s blackberry via picture message along with a ransom note. My roguish attempt was foiled because the blackberry he has does not accept picture messages. Rats.

Jen and I decided to self-tour the hotel ourselves. With our two legs propelling us every step of the way, we discovered how sleek and elegant this hotel really was until we hit the bowling alley's women bathroom.The pale blue flower power wallpaper, the red pleather loveseat and the bright orange tile with matching grout blasted our sensitive little corneas with a blast from the past. I waited for the disco ball to be lowered from the ceiling and bellbottom jeans to be thrown at our face. We left our elegant feeling in the bathroom of the bowling alley.

It was getting late, it was one o'clock in the morning but we was still running on Eastern Standard Time. That means it was three in the morning for Jen and four for me. We decided to go up to the room. Jennifer let us in the door and she began to tiptoe across the carpet because she did not want to wake Laurie up. I started laughing and that caused her to freeze as if she were a deer caught in headlights. I’m known for stating the obvious and this was no exception since Laurie cannot hear, just like us. I couldn’t help but laugh but Jen was so cute about it! I admit that it took some getting used to because I am always trying to being considerate of others when they are sleeping because I don’t want to wake them up. However, I am like a cow in a china shop and it is inevitable that I will stub my toe on the edge of the bed or my shin will hit an open drawer or my foot will find one of my dog’s squeaky rubber toys. My point is that it takes hard work for me to be that quiet and it is a welcome reprieve when I don’t have to because I am less likely to harm myself in the process.

After we got ready for bed, Jennifer and I gabbed until three o’clock in the morning. We obviously had a lot to talk about :) All of this happened and the convention hasn’t even started yet!

To be continued!!!

Pandora's Box of Flying

2008-06-17T22:12:00.009-04:00

Wow, I had an amazing time in Reno and you can bet your bottom dollar that a recap is coming. I met the Jennifer, Laurie, Mike, Gloria, Tina, Kim, Sheila and so many others! I need some time to try wrap my head around everything that happened there. But first, I wanted to tell you all how I did with my first, second, third, forth flight :) Hold on to your skivvies kids, it a long one!

For those who might be unaware or new to this blog, I have never flown prior to June 11^th 2008. I have always been afraid to fly ever since a doctor told me that I could lose the rest of my hearing and obviously this a moot point now. What was stopping me? A little thing called spiraling out of control, crashing and burning was stopping me. I consider myself extra special precious cargo and my life and every single second of it are invaluable. The unfathomable idea of ascending 40,000 feet in the air coupled with the fact that I am still a mortal being, a bionic mortal being, but a mortal being nevertheless did not bode well for my central nervous system. I was so anxious that I had to have my wonderful friend, Alex who is a Southwest employee talk me through every single step of the entire purchase process. After two hours of whining, I finally clicked the purchase button but not before an ounce of sweat oozed from my body. In alcoholic terms, this might have not been a bad thing but there was nothing potable about sweat unless you are a vegetarian.

Every time that someone even talked to me about getting on that plane, my palms would start sweating and my breathing would become labored. It wasn’t pretty. There isn’t many things that can send me into a full-blown panic attack but flying was one of them. I managed to keep myself busy to avoid actually thinking about it. I had everything planned out. I had maps. I had boarding passes. I had the security protocols. I had carry-on and checked baggage requirements. I was fully prepared for anything or so I thought.

I went to work on Tuesday and I left a couple of hours early because I had to leave my house at 2:30 am to make my 5:30am plane out of Philadelphia Airport. All the common sense in the world told me to pack my luggage and get to sleep early but by the time I got myself packed, my stomach was is a series of knots. I had this feeling that I was forgetting something. I kept hounding Alex and Geo online with my whacked out and completely unsubstantiated concerns. I wholeheartedly appreciate you two listening to me and I know it wasn't easy dealing with a crazed lunatic about to fly. Anyway, before I knew it, it was 1:00 in the morning was here and I had to get ready. I have been up for nineteen and half hours already.

It was 2:30 in the morning and I gave my mom and my dog a hug like it was the last time I was ever going to hug them. Perhaps I was a bit melodramatic but I was having a hell of a time suppressing this horrible sinking feeling that something was going to go wrong. Regardless I trekked on with the ultimatum because if I can get a cochlear implant, I can get on a damn plane to go to this HLAA convention because this is something that I needed to do for my own personal enrichment. Since I wasn’t going to cancel, I did the next best thing, I cried the whole way to the airport.

I cried just about the whole way, an hour and a half to the airport, tears streaming down my cheek effortlessly and my nose producing plenty of olfactory lubrication. I realized what I forgot to pack ─ Kleenex.

Once I pulled myself into the economy parking lot, I told myself I could do this, just get out of the damn car and do this. After all the chances of being in a car crash on the way to the airport is much greater than an airplane crashing. Did you all know that? I knew it and I did not give a rat’s ass.

I whimpered as I got out and grabbed my luggage. I turned around in circles viewing the 6,000 some odd parking spaces for the shuttle. I saw something in the distance that looked like a bus stop. I ominously walked towards it. Once in the airport, I had no time to dwell on the morbid images freely flowing though my noggin. I had to check in my luggage, get the boarding pass, go through security, Purelled the bottom of my feet and find the gate. Note to self: wear socks next time.

They started to call people by rows but I could not hear the lovely agent of Continental Airlines because she felt the need to hide behind a wall and while she spewed out the numbers. This did not bode well for the deaf one here. So I found myself frantically glancing people's tickets to see if their row matched my row. Lucky be a lady and as it just so happened, a woman next to me had the same row. I followed her when she got up, presented my first official boarding pass to the agent and motioned me towards a dank cavern. I walked cautiously down the hall clearly showing my inexperience with rolling luggage...

I found my seat and I stuffed my 10 pairs of shoes in the overhead. I looked out the window and gasped at the sheer size of the wing. I started to get antsy because I wanted to get this show in the sky. They played a video that revealed all the important stuff like where the oxygen mask and life preservers were housed. How nice of them to caption it on a monitor the size of a CD case. I could hardly see the captioning!

We started moving and so did my blood pressure. I began to perform my self-taught by television Lamaze breathing techniques at this point. The jet roared its engines and sped down the runway and all of the sudden, there was no road noise. This was not so bad. My golly, we were flying! Land ahoy!

Five minutes later, I heard chimes and then the pilot made an announcement over the speakerphone. Mind you, I did not catch the entire announcement but I have all of you know that us deaf people are pretty damn good at piecing together the context of a sentence if words are missing. I am going to poll you people and let us see what you get when you hear just these words.

sorry - plane - mechanical problems - Philly - 15 minutes

I'll even give you a couple minutes to mull it over... If you guessed that there was a mechanical problem with the plane and we must had to back to Philly and ETA is 15 minutes, my god my good people, you are absolutely correct! I can’t make this stuff up.

But wait, it gets better! I am counting every single second to avoid hyperventilating; I noticed the pilot was just circling over the Philadelphia Airport for over a half hour, well beyond the 15 minutes estimate. I hear another announcement over the speakerphone. Quiz time again!

cannot - land - plane - divert - accommodate - Newark - 10 minutes

Alrighty then, the pilot could not land the plane in Philadelphia and we were being diverted to Newark Airport because they could accommodate us with an estimated time of arrival of 10 minutes.

If I was pregnant, I think I would have gone into labor right then and there. I was freaking out. I hide it well but I was on the verge of tears but I had none left after the hour and half long crying episode on the way to the airport. This was the beginning of a nightmare. I had a strange thought in my head: maybe I misunderstood the pilot. I’ve been known to misunderstand people especially over speakerphones. I decided to ask the cowboy with the alligator cowboy hat and a beer belly the size of Memaloose Island, Idaho to clarify the pilot announcement. Unfortunately, I heard this announcement right.

“Ma’am is this your first flight?” He asked.

“Yep.” I said through a deep breath.

He starts to laugh revealing his tobacco-stained teeth. I don’t think he wasn’t in a hurry to tend to the cattle back home in Texas.

Once we got to Newark, I got my ass off that plane quicker then you can say Chewbacca! They decided to retire the aircraft that I personally thought was the great idea! We had to wait around for another plane that was hopefully mechanically problem free to be loaded up with our luggage. While there were taking their sweet time to load the luggage back on the new plane, I ended up missing my connecting flight in Houston (which is by the way where I started to blog) to Reno. While I was waiting I text my friend who just found out she is preggers with "If I die in a plane crash will you name your baby after me?" She texted me back with, "No lol."

The plane was ready and I was in no particular hurry to get back on the plane. I was one of the last one to board and once I sat down, I buckled my seatbelt and we take off ─ again! I kept peering out my window that was fit for a dollhouse trying to recall the rate of acceleration of a falling object just in case something went wrong, I wanted to have ample time to say my prayers. My eyes must have refueled themselves because every time I looked out my window I would start to cry. I think if a good healthy dose of Xanax were offered to me, I would have snatched it up by the bottle. Actually, any bottle would have been good.

Houston around 12:30 in one piece. I had to go to the ticket counter to get my new flight plans. I was expecting an easy non-stop direct flight right to Reno but no such luck! I had to go to ─ LOS ANGELES AIRPORT! That scared the hell of me. I hear horror stories in Los Angeles. I kept questioning the customer service rep if she was really sure that was the only airport I could go to. After repeating mself for the fifth time, “Really? Los Angeles?” I could see I was getting under her skin. She handed me the boarding pass and I could see that I had fifteen minutes to board the plane. I hauled ass because I was in Terminal A and had to power walk to catch a train to Terminal E to board the plane. Note to self: do not wear heels while flying. This is was such a lovely start to my vacation, don't you all agree?

I cannot make this stuff up. I board the plane and I had the unfortunate experience of sitting next to two individuals that reeked of rice vinegar. When I finally got to Los Angeles, I smelled like a stir fry. At first glance, everything that I ever read about LA suddenly became true. It was nothing but smog and it smelled! I thought to myself how much better New Jersey smells and I never thought I would say that. This huge grey cloud just lingered over the city. It took me no time at all to realized just how big Los Angeles Airport is. I was trying to find the gate to my connecting flight to Reno and I couldn’t find it. I had a Continental boarding pass. I just came out of a Continental gate. Common logic proceeds to tells me that Continental that would be flying me to Reno. Apparently, logic does not work here because I stopped to ask for direction for the hidden gate and I was informed that my connecting flight was Alaska Airlines which appears NOWHERE on my boarding pass.

I discovered quickly how Los Angeles airport does not accommodate deaf people well. Between the jets roaring, the baggage couriers bustling, women’s heels clicking, escalators rotating, cash registering ringing and people chatting, I had a hell of a time trying to understand what terminal Alaska Airlines was and it was not a good time for me to have a dead cell phone. I had to find a shuttle bus marked "A" which took me roughly 45 minutes to track down in that mess of an airport. Once I board the shuttle bus, the bus driver spoke with a distinct Nigerian accent. We had a wee bit trouble understanding one another but he got me to Alaska Airlines in Terminal 3!

I had to go through the whole security scan again with taking my shoes off. I am a little anal about where I put my feet. I ran to the nearest bathroom and doused my feet and its ten pigs with Purell. While I was in there, I decided to wash my face and pretty myself up for Reno. I found my gate and sat right in front of it. I was not moving a muscle as long as I had Gate #33 in my line of sight. I turned around there was a Samsung charging station situated right next to me. Things were looking up! I plugged my cell phone and whined to my mom whose only response was, "Only you Abbie, only you." I was two hours away from my destination and I didn’t think it could get any worse, .

I was clearly wrong. We got on board and I didn’t even take a look at the plane as I was walking up the steps. I took a seat to the window and took a look to my right and I saw PROPELLERS! Big ol' black honking PROPELLERS! I was on a friggen PROPELLER PLANE.

My nerves were officially shot at this point. To make matters worse, the pilot was an honorary a tour guide. All I heard him say that this was a beautiful scenic route and I flipped my CI off. I was not the least bit interested in him selling me snow peaked mountains and rugged terrain that we could just spiral down into and no one would know how to find us. How I managed NOT to have a panic attack, one will never know. After him flying over the Pacific Ocean and veering back over mountain, I think my heart stopped working. About ten minutes later, I looked out my window and saw images that resembled Google Satellite. That was just a testament of how high in the air I was! I was not handling this situation well at all.

Finally, I arrived in Reno at 7:30pm pacific time. I head off to baggage claim and I was fully expecting my luggage to be lost. That would have been the icing on the entire trip but my luggage arrived safe. I don't think I would have cared if it was lost. I hopped on the hotel shuttle and officially started my vacation and it only took 17 hours!

Later on that evening, I met a guy from Australia and as it turns out, he got to Reno quicker then I did.

My flight plan...

Tomorrow is the HLAA Convention :)

2008-06-10T19:15:00.005-04:00

This is going to be super short because I am in a hurry to get sleep before my first flight ever that leaves before the roosters are crowing. I am one hot bionic tamale! It is a rarity that the east coast gets plagued with 104-degree days and it is even more disgusting when the humidity is at 99.99%. Lucky for me, I am en route to RENO for the HLAA Convention tomorrow to enjoy this beautiful forecast :)

Lucky for you eastern coasties, the heat will break tonight or tomorrow...

Next post I write will be written from the biggest little city in the world! :)

Deafread, you want full disclosure?!

2008-06-03T21:55:00.018-04:00

Well, this afternoon I got a little surprise in my email from a fellow blogger name Rachel Chaikof of Cochlear Implant Online informing me that DeafRead editors have removed her blog from their aggregator website. Before I continue let me give you a little background information. In 1989, when she was just two years old, Rachel became one of the first children to receive a cochlear implant when the FDA clinical trials on them. She is now 21 years old and bilateral success story. Obviously, she has a lifetime of experience with a cochlear implant and a tremendous amount of information to offer from a unique perspective: growing up with a cochlear implant. She continually presses the ever-important issue of how crucial AVT (Auditory Verbal therapy) is to a child that has gotten implanted young. In my opinion, this is probably the best informative blog for parents of a deaf child considering a CI that a cochlear implant is not instantaneous miracle. It takes work for it to work!

I ran over to see her post: DeafRead chooses to remove CI Online from their site!

I received an e-mail from DeafRead editors saying that Cochlear Implant Online can no longer be on DeafRead simply because I am a Cochlear Awareness Network volunteer member, and they think that my website is a COMMERCIAL website. They clearly stated in their e-mail that I am “employed as a volunteer” which makes absolutely NO sense! They stated that I am violating this policy:

*SHOCKED*

I went over to see the policy (by the way DR editors, you spelled commercial wrong, twice)

6) Commerical Sites

We do not link to commerical sites for the purpose of generating profit, other than our own (we have expenses to cover!).

Then Tayler,who is a DeafRead editor decides to post this entry: Blogs disclosing professional relationships earns trust

I quote him on this:

To be clear, blogs can carry advertisements outside the entry. We understand the need to make ends meet. However, product promotion of any type cannot exist in the entry itself. This is different from a neutral blogger who, for example, is reviewing a product.

I did a simple search on Rachel’s site concentrating on entries and found not one entry mentioning Cochlear Awareness Network.

Then I wondered what the difference was between Bionic Ear Association, which is Advanced Bionics volunteer support group that I am a proud member of and Cochlear America’s volunteer driven support group, Cochlear Awareness Network. So, I did me a little research!

The Bionic Ear Association (BEA) is a FREE support network available to CI recipients, candidates, and families! Advanced Bionics understands that choosing a cochlear implant for yourself or your child is a decision that affects the rest of your life.

The mission of the BEA is to improve the quality of life of those impacted by hearing loss through cochlear implant education, awareness, mentoring, and support for recipients, candidates, families, and their support network (educators, therapists, clinicians). We are committed to an environment of friendliness, empathy, experience, integrity, and spirit for our members.

AND

The Cochlear Awareness Network (CAN) is a group of committed volunteers who are either Cochlear implant recipients or Cochlear Baha recipients. Each and every one of them has had their lives changed through either receiving a Cochlear implant or a Cochlear Baha.

Their role is that of an ambassador, talking about their experience in the hope of bringing hearing to more people than ever before. They offer support, but not advice. They share their knowledge, but they are not medical professionals. The volunteers are not employees of Cochlear™ and participate in these activities in their own time.

They are both free and volunteer based support groups that offer support and raise awareness about cochlear implant.

Since I am a BEA volunteer for the Bionic Ear Association and a mentor for CI candidates because I genuinely LOVE making sure that someone understand all aspects of what a CI entails.. The amount of time that I dedicate to my own blog not to mention all of the blogs I read, the comments I write, the forums I frequent, the emails I reply to and not too mention, the research I keep up on only contributes to my own satisfaction that I am helping someone.

Now I have a minor issue with this stupefied decision to pull Rachel’s blog off of DeafRead because they think it is a commercial website and she is a “employed volunteer.” That is a trope of all tropes. I think it is preposterous that someone has to disclose his or her personal affiliations to free support groups in order to be part of a simple aggregator’s website. The lot of us did not create our blogs solely for the sake of being on DeafRead. I created MY blog for my own personal accord and to share with others that are curious and considering a CI. I do not contribute the success of my blog to a website that just collects deaf related blogs! The only thing that DeafRead has done is introduced me a panoptic variety of different degrees of deafness that for the most part, I am extremely thankful for.

This begs the question of what is the difference between Rachel sharing her story and experiences on her own personal blog and me sharing my story and experiences on mine; all the while, we have personal NOT professional affiliations to our chosen cochlear implant company volunteer based support groups? How can you, Deafread editors, even begin to prove that Rachel makes a profit off because of her personal affiliation with Cochlear Awareness Network? You can’t! I want to see proof right now to substantiate your decision to remove her blog! While I am at it, I am going to tell you just how Rachel profits the same way I profit: when I get a tearful email for just offering words of encouragement, a post dedicated to my unselfish support , a heartfelt comment just for writing what I write. That right there DeafRead editors is worth more than any commercially made greeting card.

This is a poorly executed decision lacks not one shred of evidence. The fact that your vague attempt to show your moral fiber in the last paragraph of your post Tayler is circumstantial at best.

To be a responsible and ethical blogger, one must reveal any commercial affiliation. Not to do so jeopardizes the credibility of the whole blog and DeafRead. The lack of transparency also violates the trust of DeafRead viewers.

Neither Rachel or I make no bones about what brand of implants we chose which is posted all over our entries. I mean for goodness sakes, look at the title to our blogs! Common sense editors!!!

If its disclosure you want, disclosure you get.

I’m a BEA volunteer and a mentor for Advanced Bionics.

I’m a member of the Hearing Loss Association of America.

I’m MCSE (Microsoft Certified Systems Engineer) for Microsoft Corporation.

I’m a member of the following social networking sites which are all considered commercial: Facebook and MySpace

I affiliate myself with Shop Rite, A&P, PathMark and Stop-N-Shop by their customer appreciation cards!

Hell, I sell commercially made cookies for Girl Scouts of America!

How is that for full disclosure DeafRead editors!?

Blog list pertaining to this:

Cochlear Implant Online

Tales of CI Gal

Surround Sound

An American Mom in Tuscany

Aaron Cues

Living with Questions

Candy

Buck Full of Crab

Ambling Rambler

ASL-Cochlear Implant Community

Sam Spritzer

Der Sankt Speaks

All the Young Dudes

Anonymous Deaf Law Student

Confessions of a Cochlear Implantee

Simply Saunière

Musing on Communication

Cochlear Transplant?

2008-06-02T22:12:00.007-04:00

This is just my luck to get sick for the first time in over a year a WEEK before my vacation. Now of all times, my immune system decides to take a break and roll out the red carpet to the little ghosties and beasties to invade my body causing it to wreck havoc. My throat is resonating a teenage boy going through puberty and my nose is working overtime excreting some leftover science experiment that has obviously gone awry. With the clock ticking away, I decided to take care of this issue ASAP. I had to go to the doctor, the primary care person, the one in the white coat, the one that can write out a prescription for powerful drugs to nip my little medical malady in the bud. I decided to stay home today from my sunny little cubicle and make the appointment

I arrive at my doctors building armed with an appointment at 4:45pm EST. I haven’t been here in a while but I still know the procedure like the back of my hand.

Sign the sign in sheet.
Hand receptionist insurance card.
Hand the wrinkled $10 bill for my co-pay.
Sit down and pout.

With my bottom lip sticking out further than normal, I start to daydream about strolling through the middle of a desert in Reno on a Segway in a glittery dress made of shiny nickels and with matching cowboy boots hooked up to an oxygen tank picking Marigolds from the cactuses.

“Abbie?” the receptionist called.

I never said I was sane but I would never even dream of daydreaming in a doctor’s office of all places before my cochlear implant. I was always focused on watching the nurses every step to see if I was the next patient. I hated getting that look. You know that look of, “Yoo-hoo! I just called your name lady, I don’t have all day here!” Now I can daydream about highlighting the Smurfs lovely blue locks with blond streaks all I want!

I relocated myself to the examination room where I was questioned about my symptoms. Before I managed to get out three syllables, it was clear to the nurse why I was there. The sound of my voice caused her brows to furrow. She became uncomfortable and anxious to get out of the room. Hell I would to if I had someone sitting next to that sounded like Kermit croaking. She skedaddled out of the room as soon as she scribbled all three of my symptoms down on a sheet of paper.

I leaned my non-implanted side up against a cabinet and pouted some more. It was a short-lived lean because the man with the white coat came walking into the room. This doctor is part of the practice. He was the same doctor that filled out my medical history papers for my CI surgery. He did not have much knowledge of my history and he was pretty much relying on me. I think he would have written down anything I said to him. I should have seen if he would have written down that I hailed from the Lost City of the Atlantis. He has a gruff Jewish accent which makes it tough to understand him..

He glanced over at my direction; we exchanged optical salutations as he reviewed my extensive list of symptoms. He tells me to jump up on the examination table. I have a silly little fear that I would cause a small earthquake if I jumped up onto anything so I decided to slide right up on it. He takes the little black ear flashlight and shines it down my throat. He nods affirmatively. What was he nodding at? Who knows! I don’t think that hanging ball thing in the back of my throat talked. He moves over to my right ear that houses my hearing aid and I promptly remove it for him. He takes a gander and asks if I ever went through that surgery at Philly. I nodded as much as one could nod with a flashlight in their ear.

“So the cochlear transplant works?” he said.

Ay dio mios! Images flashed through my head where I was laying on an operating table with an open cooler alongside of me revealing a tiny cochlea embedded into an ice cube.

“Implant! I didn’t get a new cochlea from a cadaver down in the morgue, I just got computer put in my head that helps me hear.” I smiled in jest.

“Oh I dont know anything about that stuff.”

No kidding Doc. I decide to educate the man that spent 100,000 dollars on medical school about cochlear implants. He was so not amused by my little show and tell of my cochlear implant system. It was more showing than telling because I lost my voice halfway through my lecture.

Since the doctor ran out of holes to shine his little flashlight in, I hopped off the table and took a seat. I apparently have a sinus infection and laryngitis and his course of action is to zap them with antibiotics!

If this doesn’t work, I’m resorting to doing shots of cod liver oil and orange juice.

Children's Cochlear Implant Books

2008-05-27T00:27:00.008-04:00

There has been a recent surge in the publishing industry when it comes to children's books that talk about cochlear implants and I wanted to share! You can order the books by clicking on the pictures and the best part is that they all cost less then a 1/4 of a tank of gas. :) I have to say that I'm digging the title of the first book for the obvious reason :) And no I had nothing to do with it. The only book that I have read and highly suggest is Rally Caps which I have purchased some time ago and donated to the my local library because I wanted to share it with others. I am planning on doing the same with the others because the more the merrier!

Abby Gets A Cochlear Implant
Written by Maureen Cassidy Riski, Au.D., Audiologist

This book illustrates the process of how Abby gets a cochlear implant. The story shows that Abby has a hearing loss wears purple hearing aids, has a progressive hearing loss, and her family chooses a cochlear implant. The story goes on to describe hearing testing, an introduction to cochlear implants, and the steps a family would take to explore this option of habilitation for their child who has a hearing loss...

Rally Caps
Written by Stephen J. Cutler and Jodi Cutler Del Dottore
Now available in English and Italian!

RALLY CAPS is a humorous, fun-filled baseball and camp story. Ten year old Jordan is injured in an unfortunate and frightening accident while trying out for the Little League Travel team. Recovery is difficult. At summer camp he struggles to conquer his anxiety and fear in order to return to his beloved game of baseball. He forms a friendship with a deaf Italian boy, Luca, who wears a cochlear implant. Luca’s compelling positive nothing is impossible attitude, along with the inspiration he draws from his idol, Hall of Famer Cal Ripken Jr., gives Jordan the courage to return to baseball with a passion. Find out what happens as “Rally Caps” are raised in the bottom of the final inning in the biggest game of Jordan’s life. Boys and girls alike will enjoy this touching story of persevering through difficult times.

Ellie’s Ears
Written by Elizabeth Boschini
Illustrated by Rachel Chaikof

The story of a deaf girl who listens and speaks with the help of her cochlear implants! Today’s children with hearing loss may surprise you! With the help of cochlear implants, digital hearing aids, and specialized instruction in listening and spoken language, deaf children can learn to listen and speak, just like their hearing peers. According to the University of Michigan, over 100,000 people have received cochlear implants in the past 20 years. Children with hearing impairment, however, are rarely represented in children’s literature and cochlear implant technology is widely misunderstood.

My Brother John
Written by: Joanne Zellweger
Illustrated by: Andy Elliott

Release Data: May 2008
Pre-order your copy here!

It's fun, humorous and shows a day's adventure of a brother and sister.Her brother John is deaf and wears a hearing aid and cochlear implant.

I'm All Ears
Written by: Val Blakely and Tamara D. Harrison

This book is written by a resident blogger and a mother of two children that have cochlear implants, Val Blakely along with Tamara Harrison who is a speech-language pathologist that have taught her son Gage and her daughter Brooke how to speak. This is a personal account from a mothers perspective of what it is like to discover that your children have a hearing loss. I just ordered my book and I can't wait!

Memorial Day

2008-05-26T23:33:00.006-04:00

That time of year is here where the sky is blue, the flowers are in bloom and the gypsy moths are procreating. My senses have been enjoying a nostalgic jaunt down memory lane. The rays of the sun are tempting my freckles to come out and play. My happy little Hostas with their army of hybrid marigolds catches my eye every time I walk past them; I stop to smell the fragrant chlorophyll. The mixture of freshly shucked corn on the barbecue and splitting hot dogs tickles my palate. As I apply the finest mist of Coppertone, the instant scent brings me back to circa 1980, where days of when I was a little girl frolicking at the beach with sand boots unknowingly turning into a lobster. Summer is here, unofficially.

Officially, today is Memorial Day, a day to remember our war veterans. Instead, most people associate Memorial Day with BBQ parties, Indianapolis 500 and a day off from work. Today is a day that should be spent honoring the unselfish commitment of hundreds of thousand men and women whose lives has been scarified for our country. Our troops are the unsung heroes that are responsible for our freedom.

It is because of those that fought in the American Revolution that we have the Declaration of Independence. It is because of those that fought in the Civil War that slavery was abolished. Without the heroes of the past, we would not have the brave soldiers of today.

With everything that our troops have done for our country, I can relate to them one one personal issue, hearing loss. Troops are being diagnosed at an alarming rate with noise induced hearing loss and tinnitus because inadequate hearing protection. They came back home from a war on terrorism and face a lifetime of a war on communication. This hardly seems fair but who says fair is life. However unfortunate it is, they view it has a small price to pay for our freedom...

Today, I experienced for the first time since I had my cochlear implant, a bugle playing Taps. I got emotional because in a digital sense I was hearing it for the first time, only better. My eyes welled up with tears as I dropped my head to tell the veterans – thank you for serving my country and me.

My Life in Six Words

2008-05-15T08:50:00.002-04:00

I've been tagged by Jim for a "My Life in Six Words" meme.

What is a meme? A meme is basically in two ways:
1. Meme--pronounced 'mem', a memory
2. Meme--rhymes with 'theme', a theme where I am tagged to answer questions about 'me' or myself...

Here's my 6 words:

Everyday of my life is precious.

I tag the following people to do the "meme". :)

Valarie
Jennifer
Alex
David

Proverbial Needle in a Haystack

2008-05-05T20:09:00.010-04:00

As usual, the weatherman was right on target with predicting the weather – completely wrong. The northeast corridor of the United States was expecting a torrential downpour starting Saturday night, which didn’t happen. I thought that I would put the day to good use since I have procrastinated far too long with cleaning up the yard. I have way too many trees surrounding my house that I wish to acknowledge and every year they shower my front yard with useless foliage. Each year I bag up damn near sixty bags of leaves that clutter my sidewalk for weeks waiting for the township waste management experts to come and scoop them up. I came up with an idea of loading my friend’s truck up with rotting leaves and relocating them to the dump ourselves. Brilliant, I know.

And that is exactly what I did! The entire operation couldn’t have gone any smoother. We raked the leaves into a huge pile and chucked them into the bed of the truck. We attached a tarp to the top of the bed and off we went to the dump. We just made it there with ten minutes to spare. However, I completely forgot to bring the rake to pull the leaves out of the truck so I used my legs. In just under ten minutes, we had a clean truck, a neatly folded tarp and growling tummies. We decided to go out for lunch but I wanted to grab a quick shower to avoid walking into any respectable dining establishment smelling like leaf mold and garbage.

About an hour later, I climbed back into my friend’s truck smelling nice and a passing thought of where were my keys came in my head.. I checked my purse with no luck. I jump out of the truck to go hunt down my sweatshirt to find that there was nothing there. I ripped my house apart from end to end. It seemed as that they have mysteriously disappeared.

I began to retrace my steps. Vivid images of memories that were created no less then an hour ago flashed before my very eyes. I watched myself put my keys in my New York Yankee sweatshirt before I started raking. I remember hearing them clank together as I was putting the tarp on. I watched myself move my arm across my stomach that brushed up against the keys on–the–way–to–the–dump. Oh dear god!

I don’t know what came first, the sinking feeling in my stomach or the sheer wave of stupidity. We decided to go back to the dump and with some slight glimmer of hope that they were still open. They close at three and it was now four o’clock but you think that stopped me, absolutely not! All of my keys are on this key ring; car keys, house keys, mailbox keys, work keys – every single key I own is laying somewhere at the township dump – a massive wasteland the size of a small smelly island. I remind my friend not to forget the rake – says the-girl-that-lost-her-keys-in-a-mountain-of leaves-at-the-township-dump.

Ten minutes later, we pull up to the dump that conveniently was closed and gated. I’m staring at the complexity of the metal that was barring us from executing a much needed search and seizure. I thought aloud, “What the hell, I’ll jump the fence.” My friend obviously thought my magnet was on just a touch too tight. Just when I thought my fence hopping days were over, here I go hopping another one. Once I came down from the adrenaline rush, I glanced over just in time to see my friend walk through the fence. I started walking over with a puzzled look on how she just did that. She shouts, “There an opening here!” As I neared, I saw a gap in the gate wide enough to fit a couple people through. “How clever is that.” I said under my breath. “Is this trespassing?” my friend asked. I nodded affirmatively. As we walked over to the designated area, we occasionally glanced up to smile for the security cameras.

As we approached the mountain of leaves, I was hoping that the bulldozer didn’t come and tidy up the area but no such luck. My friend and I stood elbow to elbow scanning over the sheer size of the pile of leaves.

I whimpered.

Notice the height of the Garbage trucks to the leaves.

She sighed.

We sure as hell weren’t there for the ambiance so we got started raking the leaves. We scraped thin layers of leaves off with the hope that my keys will miraculously appear. This got old quickly because I started raking like a mad woman and it had started to rain. We discovered some sticks that we raked up but it was a long shot since I live in a town where the population is 86,000, it could have been any ones sticks in that pile. Fifteen minutes later, a crazy thought of using the magnet on my cochlear implant to draw the keys out popped in my head. I quickly dismissed that idea just as another one popped in my head, a metal detector! We mutually agreed that we were better off getting a metal detector; it would have paid for itself if it found the keys. We packed it up and went back to the truck where I was half expecting the entire police force outside with guns drawn at two women brandishing rakes. Much to our relief, no one was there.

With my friend behind the wheel, we were now en route to the local Radio Shack! On the way there, we were shooting the breeze but all of the sudden she tensed up and closed her eyes as if she was about to get hit by another car. I braced up as I quickly looked over to see a flock of pigeons about to broadside us. They narrowly and when I mean narrowly missed us, I mean narrowly missed us. We laughed like giddy little girls at the irony of being broadsided by pigeons on the way to Radio Shack to get a metal detector to find my keys in a mountain of leaves at the township dump. This type of thing happens all the time.

I’m no stranger to Radio Shack since I worked there at one point of my life. I walked in and proceeded to walk right to the metal detector section. There was nothing there and I started acting like a mad woman who just got her period running through the store looking for tampons. A store associate finally came around to ask if he could help me. I tell him I am looking for a metal detector and his response was, “We don’t have any in stock.” My inner voice shrieks, “are you kidding me?!” I clamped my jaw together and asked if he could find a store that does have one in stock. He tried selling me this idea that he could have one by Monday. I shook my head no and told him I needed it by tomorrow, no later. The dump was closed tomorrow and it was my only chance to find my keys before they meet their untimely demise Monday morning. He found a couple of stores within a 45-minute drive that had one in stock. We left with the list in hand and the unfortunate news that the closest store was closing in five minutes.

I wasn’t too keen on driving forty five minutes so I decided to call all the local stores; Circuit City, Best Buy, Sears, Target, Costco, Wal-Mart, Modell’s, Sports Authority and none of them carried metal detectors. I don’t get it, metal detectors were all the rave one time and now, no one carries them! We decided to head home for the night until I get a phone call from my mom telling me that Bob Kislin’s store has metal detectors in stock. We turned around and zoomed right there.

I aimlessly walked around the Bob Kislin’s store until I found the aisle harboring the metal detectors. I eagerly approached the boxes when the bright orange price sticker caught my eye– $999. I gulped and walked towards a guy behind the counter that was feverishly cleaning a Smith & Wesson. I put on my best face and giggled nervously as I said, “Is there a more affordable metal detector in stock because I am not trying to find pieces of the Titanic here? Heh-heh.” He pointed towards the floor. I thanked him as I jogged to the aisle and looked at the price sticker on the next box – $499. I walked out, went right home and sulked.

The next morning, I become an educated consumer of metal detectors while I was waiting for Radio Shack to open. I researched the brand that was sitting in store just waiting to come home to momma! Everything looked good until I got to the section that read: Maximum Detection Depth: 6”. I forecasted that it was going to be a long day if that all it could do, six measly inches.

My friend brought the metal detector since she always wanted one and we headed back to the scene. We trespassed once again. I reminded her it was only a misdemeanor. We didn’t have time to smile for the security cameras, we just went right to the mountain of leaves. We conducted some tests involving a soda can with leaves on top of it to get an idea of what the depth was. To my surprise, it was much more then six inches. :)

So here we are, on a beautiful Sunday afternoon, raking and sweeping the leaves at the local dump. At one point, I thought I needed grappling hooks but we uncovered a section where the sticks looked oddly familiar. We swept over the entire area until we hit this one spot up against the concrete wall. It emitted a beep. My heart jumped. I swept again and it emitted another beep. I held my breath because there was something righteous fermenting in the garbage truck right behind us. I took the rake and gently scraped the area where it was beeping. I saw one of my white grocery store tags peek out from behind a leaf. I scrambled ten feet up this mountain and grabbed what was my keys!

I can’t believe I found the proverbial needle in a haystack.

Auditory High of Activation

2008-05-04T14:20:00.007-04:00

Reminiscing over the past seven and half months, I realized how wet I was behind the ears as I was learning how to hear with a cochlear implant. Now still in reminiscent mode, I find it hysterical but I did not then. When this super uber technology was turned on into my dormant yet primitive ear, I realized that six trillion months of researching wouldn’t have helped in preparing me for activation.

Sure, I read all the technical details of a cochlear implant!

Sure, I read the software manual that maps my implant!

Sure, I talked to hundreds of people that went through the same thing!

I thought I had an idea of what was to come but – woo-wee my brain had other plans. I was downright disappointed when the audiologist flipped the switch. I had an archive of every single email, forum message, conversation, IM messages that was relative to activation stored in my noggin and none of it made sense. Right off the bat, I couldn’t believe how loud I sounded but realistically I was talking as soft as a mouse. Everything that I wanted to hear – I couldn’t, like cars or a helicopter so close that I could count the rivets. On the other end of the frequency spectrum, what I never heard was coming through in monumental volumes, blinkers, forks against the plate and paper! I quickly found how paper, a material made from pulp dictated my life for the next month. It was interesting that I was super sensitive to the silliest sounds. I could not understand the distinction between a twang and a pop or a hiss and a tick but I was hearing – something. Something was better then hearing nothing at all but I was enjoying the magic carpet ride of digitalized auditory stimulation.

When I went back for my second mapping, I decided that I wanted to pump up the volume! After many warning, my audiologist reluctantly obliged to my wishes. She wanted me to take it easy in the beginning. I had this whole philosophy laid out to justify why I wanted that volume cranked up, I had some hearing time to make up for since I just spent the past six months and 26 days deaf as a doorknob. It was pointless trying to talk some sense into me. If you remember the teacher from Charlie Brown with her incessant droning of, “Wah wah wah”, this is what my audiologist sounded like to me, literally and figuratively. Now I love her but it was just the fact that it was my ear. She pumped up the volume, fiddled with some settings and shipped me off on my merry little way to experience a wider range of sounds. Once again, I became super sensitive to sounds I didn’t hear the week before but everything was loud. It tickled me immensely that everything was amplified with depth and richness. Nothing sounded like my hearing aid used to but I was hanging sixteen on the super galactic auditory wave in an ocean of noise!

By the time I got back to my third mapping, I was really hungry for sound. I am sure my audiologist thought my magnet was on a little tight but I wanted her to crank it up. I wanted to hear everything and I wanted it amplified in amazing volumes! Since I read the manual that maps my processor, I read this little definition of what an IDR:

Input Dynamic Range (IDR) defines the amount of acoustic input that is mapped into the patient’s electrical dynamic range. IDR determines the intensity range (width) captured by the processor for input signals. The HiResolution Bionic Ear System has the capability to capture a very wide IDR of up to 80 dB. The default setting is 60 dB.

In laymen terms, it means that if you have a low IDR the window of sound around you is smaller and it compresses loud sounds more. If you have a higher IDR, the window of sound is a little big bigger and it won’t compress loud sounds as much as a lower IDR will. Anyway, all I saw was the word wide and the fact that it didn’t have anything to do with the width of my rear end, I wanted it. My audiologist warned me again but obliged to my incredibly inexperienced suggestion. As long as I knew that I had all the auditory input available downloaded into my processor, I was happy as a clam. The super hearing wave started to lose its gusto this mapping. Noises that were once so prominent started to fade into the background similar to how a hearing person tunes out sounds. This time, it wasn’t that booming loud sound that I loved so much before. As time went on, it was almost as though the collaboration of sounds started to equalize in my head. My brain was catching up with the new way of hearing. It reorganized the neural pathways to make sense that a click of the keyboard had an extra frequency, women have an extra resonance of high frequencies to their voice and that leaves tinker as they rustle in the wind. This was about the time I was coming down off the auditory high and start teaching my brain how to recognize speech and sounds.

My overly hasty goal of hearing everything that the world was capable of culminating led me to experience foreign sounds and sensations. I am a long-term hearing aid user and I have become accustomed having 80dB of sound being pumped into my ear for twenty some odd years. It is safe to say that I associate my hearing with amplification and nothing else. My wise wisdom for today: throw out that theory out the window when it comes to hearing with a CI – raising the volume on a cochlear implant is not the same thing as hearing aid. It is like comparing apples to oranges, Nordstrom’s to Wal-Mart and a BMW to a Ford Taurus. Some people that are conservative with how loud the volume is but not me, I was a greedy little audiophile and I paid for it.

Well, the auditory high turned into an auditory nightmare and I have no one to blame but I. I developed a multitude of minor issues such as eye twitching, sensitivity to high frequency sounds, white noise, static, and distortion. I’m usually the last to admit my shortcomings but I should have listened to my audiologist right from the start. I walked into my last mapping with my tail between my legs and I let her do whatever she wanted. I was desperate for some clarity. She changed the IDR from 80 back down to 60, which erased the white noise and allowed clarity to come through. The lesson I learned, more is not always better. In comparison between the two IDR’s, I am not missing anything but I am gaining clarity and comprehension. The eye twitching was eliminated by changing speech strategies from HiRes-P to HiRe-S and widen the pulse width significantly. Twitch free for me! Men’s voices were resolved with some gains in the lower spectrum. Finally yet most importantly, she lowered the volume. :)

So after all that I have experienced, I would think it is safe to say I have learned my lesson. After months of auditory rehab, some fine-tuning and finally giving in and letting my audiologist take control – I am very happy with the outcome. This map has been the best map so far. My hearing has gotten better then last month and last month, it was better then the previous month. Just think, if I listened to her in the first place I would not be sitting here sharing this with you. :)

My advice to all you newly activated implantee’s – Throw away what you think you know and listen to what you haven’t heard.

Download my HLAA Magazine Article.

2008-04-29T11:34:00.010-04:00

As I mentioned here, I have written an article for the May/June issue of the Hearing Loss Magazine which is now available to download! You can click on the picture to go to Cindy Dyer's blog to download the PDF file. This is my first published article and I am so excited to share this with you all! I can't wait to hear your thoughts!

New Website Layout!

2008-04-28T00:41:00.004-04:00

Do you ever get the sudden urge to revamp a room? I have painted my living room at least five times since I have been living here. It is sad, but I lost count. With the way the economy is going right now, I decided to hold on to my piggy bank and revamp my blog instead. A much cheaper alternative. :)

Besides, it was brought to my attention that several of my readers had a hard time reading with the black background and I want absolutely no one left out of my rants and ravings. Since I am a little mini web-mistress, I decided to reap the benefits of my skills and cook up something that was a little more user-friendly. While I was doing this, I did some research to see what I can do to make my blog blind accessible. From what I learned, the main content should be on the left because the screen readers are on the right. I tried finding suggestions for color schemes and the answers I got were vague. I would appreciate any suggestions on what I can do to make this more accessible..

I don't bite. Really, I don't!

Calling all my bionic buddies!

2008-04-24T09:39:00.005-04:00

Rally around the table, everyone!

If you all would go over to Brianna's Journey, Brianna's mom created this blog because Brianna is having bilateral cochlear implant surgery this coming Tuesday and she needs support, especially from moms that have been there. Would you mind popping over there and dropping a few words of wisdom? I would really totally appreciate it!

Christian over at Live*Laugh*Love just had his first cochlear implant surgery this past Monday and the lil cutie patootie come through with flying colors! He has that kind of face that just melts your heart. He is going to be breaking hearts when he gets older, I can see it already! His activation is slated for May 27th!

David over at Life in a Cone Of Silence had his surgery on April 8th and he set for activation on May 1st! The resilience of this man, unbelievable. Whatever cards he is dealt he shuffles them right out.

*Inhales*

I love the smell of activations in the air, it brings back memories. :)

My Hearing History

2008-04-23T14:08:00.017-04:00

This post is going to right back to the beginning of time – my time at least. I am going to answer the ever-popular question about my hearing history. It has come to my attention that I have been vague about my hearing loss history and that is going to be cleared up... right now!

*slaps hand on desk* :)

My little hearing biography starts in the womb.

My mother was hospitalized with pneumonia during her first trimester and was given antibiotics. I have no clue what kind of antibiotics they were.
When I was a year old, I contracted E. coli, which brought on 106-degree fever. I was hospitalized for three weeks.
When I was two years old, I became sick with a high fever. I was hospitalized. Again. This time diagnosed with Anemia. I required two blood transfusions and a three week stay at the lovely Children's Hospital of Philadelphia. This is the year that I started talking and have not shut up since.
When I was three years old, somebody gave me the year off because nothing major happened. :)
When I was four years old, my grandfather had a slight noise induced hearing loss, so everyone would talk loud. But when he passed away my parents started talking normally. I kept turning the TV up louder and louder. I kept coming down with reoccurring tonsillitis and ear infections but that is not all, my hearing loss was finally detected and I was fitted with a pair of Widex analog hearing aids. In addition to my parents being told I had a hearing loss, they were also told I was mentally retarded. Nice, right? My parents sought a second opinion and it was confirmed that a hearing loss was my only problem. At this age, I was able to equate my hearing loss with my grandfather passing away by saying “my ears died a little like pop-pop.” After that, hospitals and dying was one and the same for me.

To sum it up: I am pre-lingually deafened and no one had any idea what caused my loss because it could have been half a dozen things and one of the other. A psychic did tell me that she felt I was born with a loss (and I didn't utter a word nor did I ask anything about my hearing loss.)

*** See update at the bottom of the post.

When I was five years old, I was hospitalized and had my tonsils removed. I was surprised when I woke up that I still had that hangy ball thing in the back of the throat.

Audiogram: 5 yrs old showing moderate sloping to severe hearing loss.

I managed to stay relatively healthy for the next couple of years; it must have been all those green vegetables. When I was ten or eleven years old, I stopped wearing a hearing aid in my left ear because it sounded like I was under water and Darth Vader was talking to me.This is the year that tinnitus started but it lessened as the years went on.
When I was 16 or 17, I went through DVR and managed to squeeze a Siemens digital hearing aid out of them. It was an improvement but it broke down a lot. There was no significant change to my hearing but to my know it all attitude was a different story. :)
Around 21-22 years old, I started to experience these episodes of tinnitus or whatever the heck it was. It would sound like everything was underwater. At first, I would go to sleep with an episode and wake up fine. As the years went on, the tinnitus episodes started increasing in frequency and lasting longer.

Audiogram: 17 yrs old showing severe to profound hearing loss.

By the time I was 26, I was up to having an episode once a month for sometimes as long as two weeks.The strangest things brought them on, a strange movement on my jaw, landing hard on my feet and the cold.I stopped chewing on hard candy, attempted to walk softly (which was difficult because I am like a cow in a china shop wearing heels) and wrap myself up in dozens of scarves.Nothing worked.I abstained from coffee, tea, salt, sugar and my favorite, RED WINE. Do you have any idea how hard it was for me to abstain from drinking crushed grapes?! Staying away from all the good stuff near drove me in the ground but it had no effect on my tinnitus. It came and went as it pleased.

Audiogram 26 yrs old with severe to profound hearing loss.

In February 2007, I decided to have surgery to repair a deviated septum and upon waking up in the recovery room, I had tinnitus so loud that I could not hear anything. I was completely deaf. My hearing stayed that way for the next seven months. You can read about that day here.

Audiogram after the deviated septum Surgery

Note: This isn't the most neatest audiogram ever because it was a sloppy Audi.

In August 27, 2007, I had surgery to receive a cochlear implant. When I woke up, the tinnitus was gone. Hallelujah! I was able to hear subtle little sensations of sound through my hearing aid like my dog barking and dishes clanking but it was something!
On September 17, 2007, they flipped the switch and it has been amazing ever since.

Audiogram: Pink line is five weeks post activation with the CI.

I currently wear the cochlear implant on the left side with a Siemens Triano SP hearing aid on my right. My hearing aid is programmed to the max. I cannot have the volume all the way up because I experience sharp shooting pains in my ear. I don't hear anything substantial from my HA except for noise. Why do I wear it then? It keeps the tinnitus at bay and brings a sense of hearing in stereo. I can understand much more with the cochlear implant without the HA on.

You will graphically see as I provided that when I was tested for CI, I bombed every single test with my left ear – zero’s across the board. Quite pathetic I know but what did you expect from an ear with no stimulation for over 15 years.

A month after my CI activation, I was plopped in the soundproof jail and I scored an average 44% on sentences in quiet. The harder test is the words which I scored 8% on, but I managed to score 33% on the phonemes. I get points for phonemes because that means I was able to guess part of the word. For example, the man in the speaker said tick and I said kick – I get points for ick. :)

Five months after activation, I got stuck in the jail again and I scored an average of 79% in sentences in quiet which was well – a 79% improvement. :) My audiologist Jennifer decided that I progressed enough to do the HINT (Hearing in Noise Test) test. She gave me the +10 HINT which means the voices was raised 10dB above the noise and I scored a pathetic 34% on that. Now my one year mapping results – I scored 79% on the sentences in quiet which is not a major improvement from my last test, but I was never one of those people that was aiming for 100% because all I wanted to was to hear something. I feel that I perform much better in real life and the following tests scores prove that. These are the result of the +10 Hint – 74% which is a great improvement from my last score of 34%. My audiologist decided to give me the hardest test – the +5 HINT test which means the voices is raised 5dB above the noise and I scored – 65% :)

Some of you might go, you went through surgery and got your head cut open and you can’t even get over 80% comprehension in quiet! When it comes down to it, I didn’t get the cochlear implant to hit hundred percent in a soundproof booth; I got it to gain anything over zero percent. I was happy with the 44% a month after activation and I am happy with 80% now. However, in all actuality these test scores do not reflect how I feel that I perform in real life. I can see how well I perform just by what I am picking up.

*** UPDATE ***

On December 23rd, 2008, I was diagnosed with Enlarged Vestibular Aqueduct Syndrome.

To be updated...

Flirting with Electricity

2008-04-18T22:50:00.008-04:00

You might not know this but I am one of those tool belt divas. As a child, I preferred to play with my Roy Toy log cabin building set over my cabbage patch dolls any day. The process of creating or building always took precedent to whether or not Barbie was pissed off at Ken that day for not stopping and getting gas for the pink convertible.

To fuel my constructive fire was none other then my father who was once a master carpenter. He took me under his wing and taught me a few tricks of the trade that has been stored in my noggin amongst other stuff. :) Besides that, being a single woman with the power of Google at her fingertips, access to all the how-to tutorials is just a click of a button away, I have managed to stock up on some crafty knowledge over the years.

For the past couple of years my mother has complained that the fluorescent light in my bathroom emits this highly annoying buzzing sound. I never heard it so I contributed it to my mother hearing things instead of my inability to hear. :) Amazingly, when I got my cochlear implant I realized she wasn’t suffering from auditory hallucinations, the light really does buzz like a bitch.

Well, buzzy stopped working about three weeks ago. I’m not a princess by any means but I have a hard time functioning in the morning without some source of illumination. Since I am handy around the house my first thought was bulb blew. I took the old one to Home Depot and matched it up with a new one. I came home popped in it – Viola, it worked!

Three days later, it stopped working.

I kick start the process of deductive reasoning which led me to the possibility of a bad ballast (this thing that makes fluorescent light start, kind of resembles a big old bug). As it turns out, it takes just 20 minutes of your time and a quick trip to Home Depot to fix it. I was hesitant at first to replace the ballast – because it means messing with electrical wires.

Electricity + Cochlear Implant = The outcome can't be good.

The possibility of frying my mapping off the implant didn't sit well with me, actually the idea of being fried period didn't sit so well with me either . Therefore, I exercised extreme caution – I turned off the electricity off to whole house. Of course I had to do it when my mother was watching a movie that she has been waiting thirty some odd years to see. Whoops. I got down to business and dilly-dallied with the wires, a little cutting and stripping here and there. It was very simple: white-to-white, black-to-black, blue-to-blue and red to red. In the end, when I flipped the switch, it worked!

A week later, it stopped working.

I am getting tired of playing this game. I strapped my tool belt back on and waddled to Home Depot to pick up some switches and wire nuts. I decided to replace all three switches for esthetic purposes. I shut off power to the entire house again and started to rip the switches out of the wall and replace them – one by one. I screwed everything back together, turned the power back on and flipped the switch and my goodness gracious, great balls of fire I got light!!!

Now my outlet in my living room does not work :)

DBC Rally at the AGB Convention in California

2008-04-15T09:27:00.006-04:00

In this post you can see that I strongly disapprove Alexander Graham Bell oral only perspective. I believe in offering different methods of communication, the more the merrier I say. Thanks to Linda Slavick, she provided us with a video of the DBC (Deaf Bilingual Coalition) Rally in Milpitas, CA, the same one that Michael Chorost and Josh Swiller attended. There is no audio but watching this certainly portrays the passion of the people. Between the time 1:40 and 2:40 shows Josh and Mike speaking at the convention emphasizing that "we should be be working together" because we go through life facing the same adversities.

I have been tagged! :)

2008-04-14T06:13:00.004-04:00

Valarie over at Tales of a CI Gal tagged me today! Now its my turn to tag someone, here are the rules.

1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.

I have to answer questions and people I tag have to answer the same questions, so here I go.

What was I doing 10 years ago:
Lets see here, ten years ago would place me in my senior year of high school. Oy! Has it really been that long?!

Five Snacks I enjoy:
In a perfect, non weight-gaining world
1. Swedish Fish
2. Mocha Cappuccino blast from Dunkin Donuts
2. Soft pretzels with cheese (no salt)
3. Snickers
4. Nachos with velvetta

In the real world:
1. Dates
2. Sugar-free cherry Jello with whip cream
3. Strawberries
4. Pumpkin with whip cream and sprinkles of Graham cracker crust
5. Rice cakes

Things I would do if I were a billionaire:
1. Start my own business to create employment opportunities.
2. Contribute to charities and create scholarships.
3. Buy Jimmy Choo shoes :)

Five jobs that I have had:
1. Computer technician
2. Network Admin
3. Bookkeeper
4. Saleswoman
5. McDonald's oh so wonderful customer service rep.

Three of my habits:
1. Shoes
2. Power tools
3. Lip gloss

Five place I have lived:
1. New Jersey
2. New Jersey
3. New Jersey
4. I lived in a cabin for a weekend in northern New Jersey.
5. and the last one is New Jersey.

Add one new part, What do you want others to get from your blog:
I want people to see the world through my eyes, however quirky they may be and leave with a such of comfort, knowledge or a new found perspective.

Five People I Want to Get to Know Better: (a nice way of saying TAG!) But don't feel obligated! Just do it if you want to.
1. http://stereophonicbionic.blogspot.com/
2. http://djembeslappin.blogspot.com
3. http://www.seekgeo.com/
4. http://jimspoliticalthoughts.blogspot.com/
5. http://livelaughlovefamily.blogspot.com/

Cover Girl for Hearing Loss Magazine

2008-04-07T18:18:00.007-04:00

I'm going to pull my hair out if I don't tell someone! I can’t keep this a secret anymore! I am going to blow a fuse if I do!

The HLAA’s (Hearing Loss Association of America) magazine, Hearing Loss is going to feature yours truly! This is going to be my first cover shot AND my first article published!! It will be coming out around May!

I feel much better now that I let the cat out of the bag! :)

This weekend, I had a photo shoot with the most AMAZING photographer name Cindy Dyer! She is a creative genius and an absolute joy to be around! Go check out her blog here, which features a taste of her captivating portfolio of beautiful photographs. She really knows how to capture the emotion of her subjects. I’m definitely adding her to my Rolodex. :)

Here are the pictures from the photo shoot that Cindy took! I still can't believe she made me look like that! Someone pinch me! Please feel free to drop some comments over at her blog!!!

Somebody pinch me please!

A.G. Bell - Oral Only Organization

2008-03-31T21:48:00.008-04:00

Since my hearing loss was diagnosed before I started school, I was placed in a mainstreamed school in kindergarten up to the first and second marking period of first grade. I was then placed in speech therapy classes. I wanted to share some of the remarks made on my IEP (Individualized Education Plan):

Mis-articulations make speech difficult to understand.
Expressive vocabulary is below age appropriate levels.
Based upon Abbie’s educational needs, it is determined that she be placed in the Lower Level Auditorially Handicapped Class, which is the least restrictive program at this time.

Then I was transferred to the Marie H. Katzenbach School for the Deaf in January of 1986 for the third and fourth marking period. These are some remarks written by teachers of the Katzenbach School on my report cards:

I am very pleased with her signing ability - she learns and maintains new words easily.

Then:

I have serious concerns for the lack of language models in the confines of this restricted classroom.

And then:

There is nothing more we can do for her.

I was then transferred back to the mainstreamed school the following year to start second grade. The notation made on my IEP for second grade said :

Stress Auditory not sign – she is showing signs of confusion with dual approach.

My parents fought with the school system to continue with sign but the school refused to comply. From that point on, I was aurally mainstreamed. So, I stopped signing, I was the only deaf kid in school and I spent the next five years in speech therapy. I feel that if the school continued to stress oral and ASL, I wouldn’t have felt so lost when my hearing disappeared. It would have been easier to communicate with my mom in my own home instead of having her sending me an instant message when she was just five feet away from me. A good friend of mine who is a teacher and happens to be deaf, Valerie left this as a comment that stresses the importance of quality education,

“I am a special education teacher in an at risk school, but I am also deaf…We need educators who believe in the children, educate the children, and support the children. I am not for just Deaf individuals providing support for deaf children in deaf schools. I am for qualified educators who believe in the students and provide a quality environment that is child-centered and rich in language (ASL and English).”

I wish she was my teacher because she hit the nail right on the head.

Perhaps I am the poster child for the A.G. Bell Association but I sure as heck do not agree with their method of promoting an oral only environment for deaf and hard of hearing. Now according to A.G. Bell website, they seek to ensure that individuals who experience hearing loss have the opportunity to communicate, learn, and thrive through the use of spoken language. What part of their vision promotes the use of sign language? It doesn’t. What part of their so-called strategic plan helps someone that cannot listen nor speak? It doesn’t!

Just to give you an idea of how A.G. Bell responds to sign language, I encourage you to read a few excerpts from their press release in response to Pepsi’s Bob’s House Super Bowl Ad:

…Your advertisement perpetuates a common myth that all people who are deaf can only communicate using sign language and are, therefore, isolated from the rest of society.

… We would be very willing to work with Pepsi to develop some creative ideas to promote other facets of the deaf community and to highlight positive role models who have met the challenges of this condition and thrived using spoken language.

You can see that they got a little testy when Pepsi portrayed that deaf people using ASL and not their voice. This letter really burned my buns because the signing deaf and the speaking deaf represent the varying degrees of difficulty that we have communicating with the world.

Recently, there was a peaceful rally held at the California chapter of A.G. Bell’s conference on March 22. I knew about this a couple weeks ago and I was very surprised at the long list of people who rallied against A.G. Bell here, Deaf Bilingual Coalition California. Among the many people that attended the conference itself, one was Michael Chorost, author of “Rebuilt” and the other was Josh Swiller, author of “The Unheard: A Memoir of Deafness and Africa”.

Josh Swiller talks about his experience at the conference in his latest post "Only Connect" regarding the position that the California School for the Deaf he says

“It’s also the center of quite a bit of controversy and uncertainty – it’s a strongly ASL focused school and this is an oral world, and now there’s this device called a cochlear implant which many see as the passageway between the signing world and the oral one, and others see as the barrier. Salvation or annihilation – either way, big change is coming.”

Michael Chorost chimes in with his latest post, "We all sleep in silence"and he states,

“I’ve been to Gallaudet three times now and have been warmly welcomed each time, though I’m still a little puzzled as to why. I’m not anti-sign in any way, but I’m still the physical embodiment of much that the signing deaf community fears.”

The pair brought up valid points. Some members of the signing deaf community are apprehensive about people with cochlear implants. I can relate to how Chorost felt approaching the rally, nerves and all. I read comments every day that contribute to that uneasy feeling. For example: “CI dudes are a different set of people. I'm not saying this in a bad way” and the more extreme comments such as, “I want to kill all CI people. They ruin the Deaf world!” I read brash comments like these everyday but I see people beginning to accept that those of us with a cochlear implant are real human beings and not machines, like this blogger, Deaf Womyn Pride.

Swiller was invited as a keynote speaker to the conference and he said,

“This signing versus oral feud seems like Crips and Bloods fighting over a corner in Watts. The rest of the world could care less, and these gangs, no one else but other gang members can understand their experience, no one else has walked in their shoes– they should be working together. Instead they’re fighting to the death. We’re not so different, or more accurately, our differences are inconsequential in light of all we share. This is what I learned in Africa, and the quality of my life has a direct correlation to the quality of my remembrance of this truth.”

When Chorost took the stand, he mentioned a line that I had written in the Deafread Controversy post, “We sleep in total silence too.” I am extremely honored that he mentioned that line (thank you Mike!) but it makes perfect sense. He further went on to say,

“It’s true, we have more in common than not. We all struggle with communication.” He went on to say that, ‘Two different worlds were living side by side that day, one in a hotel ballroom, the other in sunlight. But they shared common concerns: communication and the lack of it, and the desire for community. They should have been working together.”

They should have been working together is a powerful statement. My thoughts and ideals run parallel because I believe in deaf unity. If we could fight as a group instead fighting against one another, we could accomplish so much more. If we could help each other up instead of pushing each other down, we can stand proud and show the world what we are capable of. Instead of organization like A.G. Bell advocating for deaf people to speak, how about we come together to advocate for bridging the two languages together? We all suffer from the one loss, it is not fair to leave anyone behind since we are all created equal and each of us deserve no less then the others because we all sleep in total silence.

Springtime a'coming!

2008-03-24T14:25:00.004-04:00

My good friend who happens to be the very best neighbor you could ever have, brought over these absolutely gorgeous bright yellow tulips! A subtle reminder that springtime is just around the corner! The chill in the air is subsiding, the grass will become soon become full and lush, flowers will begin to blossom and I will be outside working on my green thumb.

You know what else comes with springtime – birds, those warm-blooded, feather tickling, egg laying, beak wielding, wing flapping and poop depositing creatures that at the start of every spring manages to set up residence on one of my many trees in the yard. Its a time I look forward to every year and I am so rolling my eyes as I type this.

I never did develop a strong affection for birds. Puppies, yes! Cats, yes! Goats before they ram me in my ass, yes, afterwards, not so much but birds, never. It all started when I was holy terror of a child and I fell asleep with my hearing aids on one night. I was abruptly awakened to the sound of a dove cooing in my ear. The very notion of disturbing my beauty sleep at four thirty in the morning coooooing was a big fat no-no. I woke up and ripped my hearing aid out only to discover the cooing had sufficient time to impregnate my subconscious. Never forgot to take my hearing aids out after that unfortunate incident.

For months, all I heard was the shrilling coo of that friggen bird, isn’t it amazing how prepubescent brains retain memories. Not one person sympathized with me because every time I complained the response was always the same, “oh! I love doves!” – bite me alright, just bite me. Since that morning, I never bothered them, they never bothered me and it helped that I could never hear them unless one squawked right in my ear but last week, I slammed my car door and I stopped and just listened…

~ dee-dee-dee, chip-chip, toolool, toolool, toolool ~

~ chip-chip, dee-dee-dee ~

I turned around and in the distance, I saw a silhouette of hundreds of blackbirds adorning the treetops. They were frolicking from branch to branch, gliding through the air and playfully pecking each other on the head. The combination of all of them cheerily chirping away together was such a wonderful and organic musical experience. I was tickled pink on how well my cochlear implant was picking up the chips and chirps. Ten minutes later, I walked into my house with a newfound appreciation of bird songs!

The next morning, I noticed the sun was beginning to crest over the trees as I closed the front door and the only thing I could hear was the nearby traffic. As I approached my car, my eyes frantically scanned my entire car. I was floored by the sight of how much bird poop was on it and just before I went to mutter a few choice words but then a familiar chorus of cheery friggen chirping began. I turned around and there they sat atop the tree branches admiring their artwork. I swear that they were all laughing at me.

Now that I have come to appreciate what comes out of their beaks, I still don’t appreciate what comes out of the other end.