Saturday, October 3, 2009

What's Made Me Spill My Guts After So Much Silence?

I honestly have no idea...

Maybe it's these new Phonaks, maybe they've given me confidence, maybe I'm just tired of people thinking I'm stupid, or stuck-up, when the truth is I'd just rather not talk to you because a detailed conversation is just too much work when I can't hear you. If I don't know you very well, chances are, I just smile and nod and uh huh you politely; then I go on my way, glad that it's over.

I guess I'm just at a point where I've decided people need to understand what it's like to slowly lose your ability to hear. It's different if you're born that way, you have trouble speaking, people can tell, you learn to sign, your parents tell everybody for you, but when it happens slowly over many years, people have no idea. They think you're an idiot if they are just meeting you; if they've known you forever but haven't seen you in years, they think you're snubbing them.

I also feel like there are others out there going through this and maybe they need someone who is a step ahead of them to help guide the way, or maybe they are a step ahead of me and can ease my path.

Maybe I'm just tired of being quiet in this world of nothing but. I may not can hear but I'm ready to be heard.

I hope you will keep reading my blog as my story unfolds and as I bring the newest research and technology to light. I hope to introduce you to the rest of my story, from my first hearing aid experience to my current ones, the fear I endured after my pregnancy, the latest gadgets in my arsenal, definitely a video of my alarm clock-did you see Heroes this week, I have that set up!-and so much more.

What's Wrong With Me

Enlarged Vestibular Aqueduct Syndrome
I wear hearing aids in both ears; I can't hear anything without them, seriously, hardly anything, loud screams next to me maybe, but pretty much, nothing.

In short:
We all have these little canals in our heads that connect our ears to our brains, and mine are bigger than yours, most likely because my brain is so big : ). But this poses a problem with hearing.

According to the leading research, this is a genetic condition, both parents must carry the gene to pass on the disorder, but if only one parent is a carrier, the gene is passed to the offspring who will become carrier (autosomal recessive). Both of my parents are carriers which means about 1 in 4 of their offspring will develop the disorder. Looks like I got the sh$t stick.

It's very unlikely that my daughter will have this since my husband would have to be a carrier as well. Still, she will be tested every year starting on her third birthday, and she will be a carrier of the gene. I get tested every 6 months since the disease is progressive, that means it gets worse over time.

The discovery of this disorder happened in the 70s and because it's not fatal, there has not been a lot learned about it. Some scientists argue that it is not, in fact, genetic at all, but others claim to have isolated the causing gene. So I'm still waiting for the smarties to figure this one out.

Not all people who have the disorder actually loose their hearing, but those who do, usually begin to show symptoms in early childhood which explains why I began failing tests in the 5th grade.

Please check out my links to learn more as I am still trying to figure this all out myself.

Enlarged Vestibular Aqueduct Syndrome

What symptoms do I have?

--progressive hearing loss
--fluctuating hearing loss while and shortly after pregnancy, which may or may not be permanent if I choose to become pregnant again. I got lucky the first time and my levels bounced back up almost to where they were before my pregnancy.
--tinnitus-constant ringing in the ears, popping, dripping sound like a leaky faucet
--vertigo-short bursts that cause me to lose my balance and see the room spinning or total blackness, only once have I completely passed out from it. I experience this very rarely, maybe once a week and it only lasts a minute or two.

What can make it worse?
--head trauma
--changes in barometric pressure like scuba diving

What can make it better?
Nothing at this point but hearing aids are working for me and as technology gets better and better, life improves. If my speech discrepancy levels drop below a serviceable level, I will be a candidate for cochlear implants. The good news is that I'm not there yet!

How It All Got Started: Part II the school arranged, through the Texas Rehabilitation Commission, a meeting with an audiologist and I endured a serious of hearing tests. It was my first time in the box and I failed. But I didn't fail miserably. The result was that if I was doing okay in school and didn't feel that I needed help, nothing serious was going on. And it was left at that. I was an A student, honor roll, NHS, athlete, over-achiever, gifted and talented...high school was a breeze.

Fast forward to college. I showed up to my poly sci class, 500 students crammed into the UNT Lyceum and the professor decides she doesn't like the mic. "You all can hear me, right?"
I'm thinking "What did she say?"
Luckily one of my first and still dearest friends from college was sitting in the seat behind me. I never would have passed that class if he hadn't been there to interpret. Thanks, Chris!

And that's how it was. Every class was a nightmare. I couldn't hear the professors, some were quiet, some had crazy accents, some rooms had bad acoustics. It never occurred to me that I was the problem. I just quit going, found other things to keep me occupied, things I won't mention to preserve my mother's sanity. But the truth is, I just gave up. My father still makes comments about his fear of me becoming a pole dancer...I guess he doesn't realize, the deaf don't dance too well. My husband even makes fun of my dancing. All those years, I thought I was being sexy and he finally admitted, he was trying to not to laugh!  Don't worry, the thought of pole dancing never even crossed my mind.

So there I was, little miss perfectly college prepped, giving up before I even got started and completely ignoring the obvious (pardon my cliche). It wasn't until I met my husband and began the journey that would be my future that I finally realized, I could not hear and I could not keep living this way. He demanded that I get some help and it just so happened that another dear friend, my old college roommate, had recently discovered her own hearing issues and found help through the Texas Rehabilitation Commission in Carrollton.

She pointed me in the right direction and I found myself meeting with a kind lady named Rose Mary. Rose Mary sent me to an ENT and once again, I had to face the box. This time my results were worse than before. The doctor declared that I needed "amplification." This is a fancy word for hearing aids. Having no health insurance, I was relieved when Rose Mary said the state of Texas would pay for them. Unfortunately, the state of Texas could not have cared less about why my hearing loss was progressing, and that was never looked into.

Nevertheless, about a month or so later, I received my first set of hearing instruments, built specifically for me at American Hearing Laboratories in Carrollton. It was 2001, 15 years after failing my first hearing test.

To be continued...part II

How It All Got Started: Part I

Coach called a time out and the girls in purple and gold huddled around, eyeing the white board, waiting to hear the next play but instead they heard Coach's rant, “King, do you ever pay attention? You need to get the boys outta your head and get in the game. I've been calling you in at point guard for the last three minutes.”

Number 35, a tall girl with a stringy blond ponytail and bright pink lipstick jumped to my defense, “She's paying attention, Coach. She can't hear you.” Number 55, the Mogulette's right wing and sometimes post, chimed in, “She's half-deaf; we make fun of her all the time!”

“What do you mean, you can't hear me?”

“They count how many times a day I say 'What?' I can't hear, Coach.”

“Then you sit by me from now on.”

...and that's how I got to sit next to the hottest coach that ever graced the halls of Munday High during every basketball game.

When the mute button is pushed on my HDTV, it goes completely silent; when the button is pushed on the other set which is connected to a stereo receiver, there is a faint murmur of sound. You know it's there but can't really make out what is being said. My life is like that second television on mute. That is how I hear. Everything is a murmur and much is lost completely. Birds do not sing, leaves do not crackle under my feet, my dog does not wheeze, alarm clocks are useless, and telephones are impossible. If you stand behind me when you speak, I will never know you are there. And yes, some of my friends seem to think this is funny. Ha ha, joke's on me.

But the truth is, it is not funny.

That coach was the first and last teacher to know that I could not hear. Maybe he said something, maybe he didn't, but a few weeks later, the school nurse hunted me down and forced me to take a hearing test. She would have done it sooner, but I managed to avoid her for several years.

Taking it back a the fifth grade. We saw her come into the building with her big metal case. She called us to her office one by one, hooked us up to head phones, and instructed us to raise our hand when we heard the beep. It was my first hearing test. I didn't much mind; I was good at tests. When it was over, she asked me if I had been sick recently. I told her yes. And this was true, I had bronchitis a couple of weeks prior. She said that I didn't do so well on the test but it was probably due to my illness and that she would test me again in a few weeks. She never did.

In the seventh grade, I heard a rumour about a guy who had just graduted from high school in our town. He was rejected from the Marines because he could not pass the vision test. This was disturbing to me since I had decided that my life's ambition was to become the first American female fighter pilot. Between the pictures of Johnny Depp and New Kids on the Block, I had plastered my walls with posters of planes and helicoptors. No way was that nurse ever going to evidence my failed hearing test on paper.

Later that year, I spotted her again trooping into the building with her shiny metal case. It was testing day. I was a clever kid when I needed to be; they started calling students out of my class, one by one; when they got to my row, I asked for a bathroom pass and I did not return to class until I was sure she was done. It worked!

Apparently, they test every other year at my school because she was back only a few weeks after the basketball incident. Once again, I tried to duck out of it. I hastily finished my English assignment, waited until it was close to my turn, then asked the teacher if I could go to the theater arts department to work on decorations for the play. Ms. Ratliff was a sly one; she must have been in on it because she said no and sent me directly to the nurses office where a whole lot of hand raising at the beep failed to happen. I think the coach must have ratted me out because the nurse was firm this time. My mom worked hard to provide for us so I had always been the kind of kid that tried to make things easy for her. When the nurse threatened to send a letter to social services if my parents did not take me in for further testing, I knew I had been backed into a corner. It was time for Mom and Dad to learn the truth.

To be continued....