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

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

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

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

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

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.

1. Zinser must resign and a deaf president selected.
2. Spilman must resign from the Board.
3. The percentage of deaf members on the Board of Trustees must be increased to at least 51%.
4. 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?!

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

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!

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!!!

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!

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

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!!!

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!

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!

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?

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

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...

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

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

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!

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 :)