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Thursday, October 28, 2010

What Technology Means For One Deaf Person

I'm stealing this blog that I read today because much of what it talks about is what I am dealing with now.   Knowing that my sister went totally deaf in her 40's is always in the back of my mind.  I might end up there too.  
Technology has certainly made it possible for me to continue in Surgery but for how long?   Will I be following the path this author took to a desk job and finally, out of a job when I can't hear on the phone anymore?    All a great big question mark.

Life, hearing loss and other stuff

What Technology Means For One Deaf Person

06 04 10
Written by kim

Last week, Mike, posted about what technology means to deaf people.  I have been thinking about this a lot lately.  Unlike Mike I don’t sign all that well, even after six levels of sign language classes.  The problem is I have no one to sign with.  More important I have no one to sign TO me.
Thing is, I grew up using my voice.   My husband and kids all speak.  My parents speak.  My in-laws speak.  My aunts, uncles, and cousins speak.  My friends and coworkers speak.  My neighbors speak.   ASL isn’t my language.
When you have a progressive hearing loss, you don’t know what to plan for.  You don’t know if you will become more deaf or when, or what that will mean for your relationships and your life goals.  Your future is a great big question mark.  I guess everyone’s future is a question mark, but it seems less certain when you lose some hearing every few years.  You are hyper aware that it’s all temporary.  In some ways I feel fortunate that I discovered the temporary nature of body parts a long time ago.  While friends my age are just now beginning to grapple with failing parts, I can take it in stride.  My hearing began failing long ago.   I get it.  It’s all downhill from here from the day you’re born — but that’s for another blog post.
I went to school to be a dental hygienist.  After working in a couple different offices and really sucking at it, I realized I would never be comfortable in an environment where everyone was wearing a surgical face mask all day.  They say deaf people can do anything, but it’s not true.   We can’t lip read through surgical masks.  Bluffing doesn’t work all that well in the dental office.  You don’t want to confuse tooth number fifteen with tooth number sixteen.
I didn’t know my hearing was THAT bad until I started working.  I was shocked.  I did so well in school.  I knew all the factual stuff, but I couldn’t communicate with my patients.  I couldn’t put them at ease.  I wasn’t at ease.  I couldn’t understand the people I worked with.  Eventually, I got a job with a dental insurance company.  But as time wore on and my hearing worsened I began to have trouble on the phone too.  I lost confidence in myself.
I still struggle with the career stuff.  Currently my library system is experimenting with restructuring some job classifications, and I will have to make tough choices that may pit my hearing issues against my arthritic neck.
But back in the late 70s/ early 80s I had not even gotten that far.  I didn’t know what I could do for work, what I would be able to do in the future, or how long I could do it.  I wasn’t prepared for hearing loss.  There was no ADA in the 1980s when I was starting my career. There was no one to advise me.  HLAA was in its infancy and ALDA didn’t exist.  Voc Rehab? Forget it.
I got my first pair of hearing aids in the early 1980s.  They were analog aids and they made lots of electrical sounds.  I loved them!  I loved the way paper sounded.  I listened to myself chewing apples.  If you have always had good hearing, you can never know how cool it is to have it restored.  It was Fall and I purposely walked through dried leaves  just to hear them swish and crunch.  It was great!  But it was temporary.  Over the next thirty years my hearing continued to fail time and again.
While my audiologist was fitting me in the early 80s, I remember how excited he was about a new ‘digital’ aid he read about in a magazine.  It was the size of a room!  If only they could make something like this small enough to wear, it could revolutionize hearing aids, he said.  He was right.  The microchip was invented a few years later and hearing aids went digital.
At some point I saw a program on PBS about the very first guy to wear a cochlear implant in the US.  He couldn’t hear speech well, but he was able to hear environmental noises.  This looked promising.  I hoped my hearing would hang on long enough for cochlear implants to be perfected.  It did.
About five years ago, my audi said he wanted me to start considering the cochlear implant.  He felt I was getting to the point that hearing aids may no longer help.  He didn’t think I was quite there, but wanted me to be prepared.  By that time I already knew several people who wore implants.  I saw how it changed their lives.
I have failed to qualify for the cochlear implant several times now.  In 2007 I learned about an exciting new break through for people like me with a steep ski slope loss and good low tones.  Normally people like me are between a rock and hard place.  We don’t hear so well with hearing aids, but because of our low tones we hear too well for the CI.  The cochlear hybrid implant made by Cochlear Corp, is essentially the same device as the Nucleus 24, but it has 12 electrodes and is only threaded half way into the cochlea to preserve the low tones.  At first I didn’t like the idea of being experimented on. I didn’t understand the hybrid technology or why it would be better than a regular cochlear implant.   Then after my speech discrimination failed last summer, I went for more CI testing.  That time I missed qualifying by only three percent on the left side– my good side. But once again I  qualified for the hybrid.  This time I was ready.
Unfortunately my insurance wouldn’t pay for it, since it is not FDA approved.   I was secretly relieved.  One thing that bothers me about the hybrid is that you wear BOTH the implant and a half shell ITE hearing aid.  Since they only thread it into the cochlea half way, you still need the hearing aid for those lows that need mild to moderate amplification.  I would love to have naked ears.  I hate the plugged up feeling of ear molds.  I hope they improve the design so the aid is combined with the processor and maybe you get an open fit mic with tube instead of the ITE aid.  With all that apparatus over your ear and stuff in your ear, it seems like too much going on especially if you wear glasses like me.
With the hybrid out, I began exploring new hearing aid options.  In 2008, I had learned about frequency transposition technology– a relatively new development in hearing aids.  It seems whenever my hearing reaches a new low, new technology has been perfected to make my life easier.  These are working so well for me I am wondering if they may negate the need for the cochlear hybrid all together.  Given the choice between surgery or an effective aid, I believe most people would choose the aid.
Thirty years ago I could not have imagined living such a full life with a severe to profound hearing loss.   I used to worry about my future.  I was paralyzed by indecision.  I didn’t know how to plan for a life of being deaf– or if I should– since no one knew how deaf I would become.  There is still the real possibility that I could wake up in complete and total silence tomorrow morning.
Technology means hope.   It means I if I wake up deaf tomorrow, I will not have to quit my job.  It means my relationships with family and friends will remain in tact.
If you’ve read this far, thanks.  This was a long one.

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