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Thirty-some Years of Hearing Loss Progression

Posted Oct 09 2009 12:00am
by kim

I’m way behind on reading what my blogging buddies have been up to. With family relatives visiting for the summer and all the projects we tried to squeeze in before the rains hit, we’ve had our hands full. It’s been a glorious summer here in the Pacific Northwest– a real summer with hot weather that makes you sweat. Most people in the Seattle area (I read 80%) do not have air conditioned homes because we normally only get about three days above 90 degrees a year. This year was different. It was enough to make people run out and buy fans.  TV ads recommended families to head for public air-conditioned spaces, which meant we had the busiest summer ever at the library.  Something like 45,000 kiddos pariticipated in our summer reading program– a record year.

Anyway, just recently I ran across Mog’s post on her hearing loss progression and it inspired me to do my own.  I encourage you to pop on over there because she does a great job in explaining the different stages of hearing loss.  First, I have to thank MOG because I learned some things about Excel 2007 while doing this project.  Secondly I have to apologize for the look of my efforts here.  I’ve never been good at using Paint.  I almost thought about re-doing it, but don’t have the patience.  Or time.

MOG’s hearing loss happened more quickly than mine.  She had a mild loss in 1994, and by 2009 she was ready for a cochlear implant.  My hearing loss was discovered when I was nineteen.  It was mild to moderate then.  Hearing loss doesn’t run in my family, so at first doctors suggested that maybe I had been listening to music too loudly.  Maybe I had gone to one too many rock concerts?

30 years of hearing loss

By 1984 I had a child, and had not been to a single rock concert.   At the time I was heavily into baroque music.  I played the piano several hours a day.  Though I was frustrated with the quality of sound I got from my hearing aids, I could still hear the high notes on a piano.  By then it was clear my hearing loss was not due to noise pollution.  I had medical testing done to rule out common causes of hearing loss.  It didn’t seem to be genetic.

An in-depth medical history turned up a couple red flags.  I had had measles;  (Didn’t everyone before they developed a vaccine?)  and I had been given streptomycin.  Both are known to cause sudden hearing loss.  My hearing loss is obviously not sudden, but doctors can’t rule out the possibility that either the measles or streptomycin damaged my cochleas, since both are known to cause hearing loss.

I was concerned and thought I should prepare for the future.  I brought up the idea of ASL, which was totally nixed.  Your hearing is too good.  The deaf will never accept you.  It’s a very difficult language to learn.   No one teaches it where you live. . . I got a book and started exploring it on my own, but they were right.  I had no one to use it with.

By 1993, my hearing was slipping into the severe ranges.  I was in my mid-thirties.  I learned the word ‘idiopathic’ after seeing it written on my chart in a doctor’s office.   It meant there was no known cause for my hearing loss.  Once again, I explored the possibility of learning ASL, but I really didn’t have a lot of time to devote to myself while raising young children.  Besides, doctors kept reassuring me that the hearing loss progression could stop at any time.  They had seen it happen before.  I took a couple ASL classes with my kids.  We learned to fingerspell and a few food signs, but not enough to be able to communicate well.  My third pair of hearing aids were not ‘digital’ but they were digitally programmed analogs and I thought they were pretty cool.

Some time around 2004 I had genetic testing done on my DNA to rule out genetics once and for all.   Two of my children had reached the age I was when the hearing loss was first diagnosed, and I wanted to be sure they didn’t spend years struggling in denial like I had.  Two of my grandmothers were adopted.  Even though both lived to old age with no known hearing loss, we never really knew much about their family medical histories.  I hoped the Connexin 26 testing would rule a genetic cause, and it did!  But of course nothing is ever certain.  Even though most known genetic conditions that cause hearing loss run through that marker, there is the possibility that some other genetic conditions have not yet been identified.  Those could run through some other marker.

My audiologist broached the subject of cochlear implants and recommended that I be tested around this time.  Though my speech discrimination was still good with hearing aids, he felt I should begin thinking about my future.  It wasclear the hearing loss would not arrest itself.  It wasn’t a matter of IF it would get worse, but WHEN.  It was getting to the point my audie may no longer be able to help me with hearing aids, he said.   My digital power aids were awesome and I had unbelievable speech discrimination despite the  low scores on my audiogram.  Speech tones were dipping into the profound ranges.    I began using the term ‘deaf’ to describe my hearing loss.  Neither my audi or I thought I would qualify for the implant, and I was quite relieved when I didn’t.

Five years and four CI tests later, I still haven’t qualified, other than for the hybrid which my insurance company considers ‘experimental’.  This past year my hearing had not gotten worse, but my speech discrimination took a huge nose dive.  It happens as we get older, my doctor explained.  Your ability to make sense of jibberish diminishes.

By now, I’ve learned more ASL, but my family has grown up with someone who speaks.  They’re busy.  My husband feels he’s too old to pick up a new language.  He could be right.  He’s nearly 60 and going deaf himself.  While I recognize ASL as a beautiful language, for me it is just a tool since I doubt I’ll ever be fluent.  Fluency requires practice with others who are fluent.  I speak.  Everyone around me speaks.

Even yesterday someone said she would never have guessed I struggled with my hearing because I spoke ‘like a normal hearing person’.  I cringed when she said it even though she meant no harm.  We’re ALL normal.

Many times I have thought about what might have happened if circumstances had been different.   If my hearing loss had begun nineteen years earlier, or if it had progressed as quickly as MOG’s, I might be using ASL more than my voice now.  I would still be the same ‘normal’ person, but would others see me in the same light?  It’s disturbing to think someone would judge how normal I am by how I speak.

And yet, many Deaf also judge me by how I speak.  The fact that I “choose” to speak rather than sign smacks of rejection of their culture.   But it wasn’t a choice.  I never chose any of this.  I’m merely trying to live my life to the best of my ability with the tools at hand.  That’s all any of us can do.

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