Last Days of Residual Hearing

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Me with my mother, sisters, and cousins for Three Birthday Weekend in Charleston.  Note the tiaras.

Me with my mother, sisters, and cousins for Three Birthday Weekend in Charleston. Note the tiaras.

In case I got cold feet, the Girl’s Trip to Charleston with my female relatives served to remind me of the profound nature of my hearing impairment and how lucky I was to have an opportunity to act.  Every group conversation in every noisy restaurant where I could not keep up served to reaffirm my appointment in the operating room.

I would sit at the table with a smile on my face, looking engaged enough to be involved but not so engaged that someone addressed a question or remark my way.  I have enough energy to strain for about one hour before I am exhausted and ready to quit asking people to repeat themselves and stop trying to understand my way into a group conversation.  But my trouble is not limited to noisy restaurants and groups; I can no longer understand one person in a quiet room without reading lips.

The alternative is to stay home.  And as I reach the limits of my ability to participate in the hearing world I increasingly understand why many choose that option.  My husband, friends, and family are very generous in accommodating me but there is a point where it just becomes a waste of energy to try.  But I don’t want to stay home.

On the day before surgery, my husband asked me if I was nervous.  I said I was not.

 

Choosing the Device

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This part of the device is implanted.

The decision was mine and I put it off as long as I could.  Three manufacturers make cochlear implant devices and neither my doctor nor my audiologist nor Google would tell me which of the three to choose.  The only person who will tell you without hesitation which brand to choose is one who actually wears the implant.  And they all recommend the same manufacturer.

The one implanted in their head.

My method for making this decision was to:

  • Query every resource my audiologist provided
  • scour online websites and blogs like the one I am now writing
  • ask my husband for help (he’s good at this sort of thing)

On decision day, my husband and I reviewed all of the data: manufacturer’s materials, emails, and notes (not mine, the cogent notes he took during demo sessions, thank goodness) and developed a list of attributes.  We scored the devices for each attribute on the list and then weighted the attributes most important to me.  I am pleased to announce that our method generated a clear winner.

(It is not the purpose of this blog to promote anything other than the author’s experience but in the interest of sharing details that will be important to some, I’ll divulge the fact that I chose Med El.)

Pre-Op TO DO List

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The BEFORE picture.

I reached the point where I was ready to commit to a cochlear implant and called to schedule my surgery.  But like Dorothy arriving in The Emerald City to ask for a new ear, it wasn’t that easy.  Before a surgery date could even be discussed with The Great And Powerful Oz I would have to fetch a few broomsticks.

I exaggerate.  Various doctors and technicians were required to examine and certify me cochlear implant-ready before proceeding.  Following is the list of people and procedures that signed off on me:

  1. Audiologist to make sure I’m REALLY deaf
  2. Auditory-Verbal Therapist for a preview of what’s to come
  3. Psychotherapist to make sure my spirit is ready
  4. Internist to make sure my body is ready
  5. Brain MRI–last chance for an MRI before magnet installed
  6. Chest X-ray: just checking…
  7.  VNG Test: videonsytagmography where cool and warm air was blown into my ear while I counted back from 100.  (I passed)
  8. And if that wasn’t enough, I was sent to the pharmacy for a pneumonia/shingles vaccination.

When I arrived for my pre-op appointment with Dr. Peters, I felt the confidence of one who has accomplished a demanding mission, actually showing up with the infamous broomstick.  But I’m totally on board.  If there is any reason I should not have a device implanted in my skull, I would rather know before the drilling occurs.

And Then I Went to the Support Group

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Each meeting features streaming captions projected on the wall.

At a meeting of the Cochlear Implant Support Group I quickly discovered there were two types of people in attendance:  those who could hear and those who couldn’t.  The people who could hear all had cochlear implants; the rest of us had hearing aids.

The people with cochlear implants were calm and happy.  The people with hearing aids were craning to read the captions projected on the wall as the speaker presented a program on the latest hearing gadgets.  The people with cochlear implants asked questions and shared anecdotes.  The people with hearing aids (me included) just tried their best to keep up.  Admitted, the hearing aid people were having trouble keeping up, not because hearing aids are inferior, but because we’d exhausted the benefit of hearing aids; they’d done everything they could for us and it was time for us to move on.

A kind young man with a cochlear implant he’d had since the 80s introduced himself and offered encouragement.  He said the most surprising thing was how much more energy he had after the implant.  He no longer had to work so hard to understand everything and had excess energy to put into other things.  That sounded promising as I headed home, exhausted.

 

Second Thoughts

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They HEARD the punchline.

WAIT A MINUTE…

After the diagnosis I scanned the brochures advertising cochlear implant devices and discovered something that caused me to stop in my tracks.  Yep.  The cochlear implant brochures featured the same smiling people that populate the hearing aid brochures.  They’re all laughing at a joke.  And they’re laughing because they HEARD the punch line.

I’ve worn hearing aids for 29 years and I have yet to HEAR a punchline.  If I’m laughing it is because I’m faking it (which I do a lot) or my husband has repeated the punchline for my benefit.  Smiling people on hearing aid brochures do not trick me.  I know what hearing aid hearing is like and these brochures always strike me as false advertising.

So if I don’t believe the bad actors in the hearing ads why should I believe them in the cochlear implant ads?  If cochlear implant improved hearing is similar to hearing aid improved hearing, what’s to get excited about?  And why would I want to give up my residual hearing for that? Hmm?

Diagnosis

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Dr. Brian Robert Peters of the Dallas Ear Institute, my hero.

My good ear was responsible for almost all my hearing, so when it began the steep decline I sought the help of  a doctor of Otology, Dr. Bob Peters of the Dallas Ear Institute.  My question to Dr. Peters was something like this:  Can you fix my good ear?

The response was something like this:  Your bad ear qualifies for a cochlear implant.

I wasn’t there to talk about my bad ear or cochlear implants; I’d given up on my bad ear long ago and cochlear implants were horribly bulky last-century equipment for completely deaf people.
Besides, my bad ear had terrible discrimination problems, as in no matter how much the sound was amplified, I couldn’t understand it.  Just thinking about my bad ear made me feel discouraged.

But Dr. Peters explained, in finer medical terms than I can reproduce here, that a cochlear implant would bypass the problems in my middle ear, stimulating electrodes placed in my cochlea that would communicate directly with my brain.  My bad ear would be better than my good ear, close to 80% of normal hearing (up from  a current performance of 11% on a good day and a low frequency).  Advances in technology had made the device appropriate for more people with varying degrees of hearing loss.  More testing would be required to confirm my qualification for the implant but the news that my bad ear could be made to hear was nothing short of shocking.

Amazing Grace!

I got in my car and cried.  Then I called my husband.  Driving home, I got excited about my bad ear.

How I Got To Be So Deaf

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Me launching my debut novel over tea at The Adolphus Hotel

Me launching my debut novel over tea at The Adolphus Hotel

This may come as a surprise to people who know me: although I am profoundly hearing impaired, I do not think of myself as deaf.  Call it denial but I have made a point of trying to pass as a hearing person and live in the hearing world all my life.  I think of myself as a wife, mother, and author and I consider my hearing impairment a big nuisance.

My ears have always been my weak link.  My grandmother was deaf and my great grandmother was deaf and whoever came over on the boat from Ireland 150 years ago was probably a champion lip-reader.  As a child, it seemed as if I had ear infections almost every weekend, even after a tonsillectomy at age 5. The pain in my head would grow until it became unbearable and I would then tell my mother who would drive me (unawares) to the doctor’s office where I would begin screaming as soon as I saw the Laundromat shingle that hung near the doctor’s office, a dripping wet shirt outlined in neon, an icon I still associate with the pain of a penicillin injection or lanced ear. I survived the agony of my last ear infection in graduate school thanks to Jack Daniels.

During my first winter as a self-supporting college graduate, a raging upper respiratory infection left me worse than it found me: my left ear could no longer hear clearly on the phone.  A doctor smiled as if he were slightly embarrassed, something they do before delivering bad news it turns out.  He told me that I had lost hearing in the highest frequencies.  I would be able to hear in the range of normal speech but  hearing aides would be of no use to me.  Yet.  After the appointment I walked back to my Washington, DC office, not sure whether I should cry for my lost hearing or return to my desk and get back to work.

I worked around my hearing impairment until age 26 when it made my new job as a Bank Officer in a large regional Dallas bank difficult.  I bought hearing aids and continued to live in a hearing world, as a hearing person, but my impairment went downhill from there.  I explained a 5 decibel decline on a hearing test over the course of a year to a co-worker and she remarked, “well, we can see where that’s going.”  And indeed it did go, year by year, decade by decade, slowly at first, manageable through advances in hearing aid technology and sheer effort on my part, but gradually declining over the course of my nine year banking career, my marriage, the birth of four sons, and the launch of my debut novel, until my bad ear was almost useless.  I depended on my good ear more and more until five months ago when even my good ear could no longer understand my husband’s voice without reading his lips.  My hearing loss became so hard to work around that I decided to consult a new specialist.