Research Begins…

I visit my brother Bob to ask him about his cochlear implant experience and how he is doing with them.  He was very thorough and kind.  He has bilateral implants and has no regrets about his decision.  He thinks he waited too long and should have done it sooner.  He had his first implant at 56 years old.  He’s now 64.  First, he had an Advanced Bionics implant and several years later was approved for the other side, in which he got a Med-El device.

I was able to share some of my fears and crazy questions with Bob and he was very reassuring.  He said the surgery is no big deal and recovery is quick.  The activation 4 weeks later is quite exciting and emotional.  It takes time to learn to use the implant.

Things Bob can do now… have a conversation in the dark (sometimes), hear someone from another room, hear birds, talk without shouting…

The one downside for Bob is that he has lost music appreciation.

Bottom line is that Bob recommends the implant.  He says I will hear better.  He also offers to come with me for appointments, which is very sweet.

How Deaf Am I?

I stopped cheating on my hearing tests in the fourth grade.  Each year, we would gather in the school nurse’s office in small groups and listen to tones while wearing big rubber headsets.  The nurse instructed us to raise our hands when we heard a tone.  Always wanting to “do the right thing” in school, I would dutifully raise my hand when everyone else did even if I did not hear the tone.  Finally, I realized that was not the point of the exercise.

My official diagnosis of sensorineural hearing loss had begun.  In those days, the early-mid sixties, the prescription was to sit in the front of the class.  I don’t know if my parents received any other advice or guidance.  At one point I seem to recall a suggestion for speech therapy to avoid impact on my speech due to my hearing loss.  Again, I have no memory of what reaction or questions my parents may have had.  However, no action was taken.

I was an excellent student, always.  The accommodations I needed I was luckily able to make on my own.  Sitting close to the teacher, looking at people when they talk, etc.

I always recognized my hearing loss and generally would not hesitate to let people know.  The challenge was that because I did so well and did not wear hearing aids, it has always been invisible.  So even, if I tell those around me what I need, such as get my attention visually before speaking to me, they forget again and again.  It’s tiring and I’ll admit that at times I give up.

Like many cases of genetic sensorineural hearing loss mine has been progressive.  I rarely got tested because each time I did the information and advice was the same.  “Yes, you have a serious hearing loss.  No, we do not recommend hearing aids.  It could stay the same. It could get worse.  Have a nice day.”  For forty years…

Now I’m fifty years old and coming to a crossroads. My hearing loss has worsened.  My professional situation has improved.  The two are intersecting at a point that is my own personal “tipping point”.  I am expected to attend and conduct more and more meetings at work.  My hearing is at the point where that is becoming trickier and trickier and to meet this expectation is exhausting, so exhausting.

I decided to go “back to the well”.  At this year’s annual physical I asked my primary care physician to help me set up an evaluation and exam for my hearing.  Luckily, I still live in the Boston area and my primary care doctor is at MGH.  She schedules an otology appointment and an audiology appointment at Mass Eye and Ear.  The last time I visited Mass Eye and Ear was in the early eighties.

My visit to Mass Eye and Ear turns out to be very weepy.  Weepy?!  Auugh.  Embarrassing.  First I speak with the otologist.  She is very kind and professional.  Almost immediately, when I begin recounting my hearing loss history, my family history of hearing loss, and the current challenges I face, I burst into tears.  There’s a box of tissues nearby so I try to console myself by assuming I’m not the first weepy patient.

Next, I wait for an audiologist to conduct a hearing test.  I HATE hearing tests.  I know I will fail and I will fail badly.  Must we document my failure?  Isn’t there a simple blood test or scan we could do instead?  The failure is tough because there’s nothing I can do on my own to improve the situation.

The hearing test begins.  At first simple, each ear, tones of different frequencies.  Raise your hand when/if you hear anything.  The next part, word recognition is impossibly hard for me.  Background noise is added, a man’s voice plays.  He says “Ready” and then a word.  I am supposed to repeat the word.  For the most part, 80% of the time, I cannot do this. My normal communication ability relies on lip reading, context, and asking someone to repeat or rephrase if needed.  Again, I burst into tears and the audiologist offers to take a break.  I become depressed and sullen.  The audiologist is very sympathetic and asks me to try and guess because she needs this feedback in order to make her assessment.  I am not my best self and I am deeply embarrassed.

The audiologist says I may be a candidate for a cochlear implant.  We discuss briefly and I mention some of my initial concerns and fears.  I am very active and would this impede my lifestyle.  It’s a permanent decision and would it close off future options that may develop targeting restored nerve function.  Will it really improve my situation on a daily basis.  I’m terrified of hospitals and medical procedures.  Etcetera, etcetera.

My final stop on this day is back to the otologist with the audiology report.  She reviews the report and says it’s more or less what she expected to see.  Yes, I am a possible candidate for cochlear implant.  She explained the next step would be to further evaluate my suitability by scheduling a day of appointments for additional testing, such as a cat-scan of my cochlea.

I cry some more.  I say that I’m afraid of surgical options because I value my intact healthy body, which has never even had stitches.  She says talk to other implant users, such as my brother, take the next step regarding evaluation, and get more information.  Once we have done the full evaluation then I can think about it.

I ask the otologist “how deaf am I?”.  The answer is that it’s tricky to define deafness in a simple way because I have hearing in some ranges. However, the otologist tells me that from a practical communication ability standpoint I am Deaf with a capital D.

I am fifty years old and I just learned that I am Deaf.  Who knew?  Huh.

September – October 2011

Barbara at her 50th birthday party

Barbara is 50