Managing Expectations


    I recently read an article encouraging people like me (those waiting for a cochlear implant) to spend some time “managing” the expectations of their family, friends, coworkers and others close to them.  Why?  Because the advances in modern medicine and the pervasiveness of technology have, sometimes irrationally, raised our expectations.  When I was in elementary school, my grandmother had cataract surgery.  She went to the hospital, they sandbagged her head to keep her immobile, and she stayed in the hospital for weeks.  A few years ago, my father had the same surgery.  He went to the doctor’s office, had the surgery in an hour or so, drove himself home and slept in his own bed that night.  Today, if we need a new computer or an electronic device, we go to the store and we expect that it will work “right out of the box.”
    These experiences lead us to expect miracles.  When we talk about a cochlear implant, a device that will restore my hearing, many will assume that, as other modern miracles, or electronic devices, that overnight, my hearing will be restored.
But that isn’t the way it works.
    Those of us who grew up watching The Six Million Dollar Man and The Bionic Woman need to know that a cochlear implant is not a bionic ear.  There are however, more accurate comparisons that will give us a more realistic understanding of what to expect.  The Broken Leg analogy: Many of us have heard about young athletes who receive a traumatic leg injury on the football field, ski slopes, or other sporting event.  Despite their skill and athleticism, after weeks and even months in a cast, they must spend a significant amount of time in physical therapy re-learning how to walk and rebuilding what was lost.  Receiving a cochlear implant might look more like that than expecting a miracle “right out of the box.”
But even that doesn’t go far enough.
    Those who know me know that I am a reader.  When my brother and I started keeping aquarium fish, I read voraciously about fish-keeping.  Knowing that I was traveling down the road to getting a cochlear implant, I did the same thing.  I spent hours reading the information and watched the DVD that my doctor gave me, and hours more searching the Internet for scientific studies, odds of success, and the blogs of people who had regularly written about their experiences following surgery. I also wrote to my cousins who received implants years ago following a childhood illness.
    From this study and reading, I think that the “Broken Leg analogy” doesn’t go far enough.  Perhaps a better analogy, as gruesome as it might sound, is the “War Veteran analogy.”  Think about “Dave,” a young soldier in Iraq or in Afghanistan who is injured in an explosion.  Dave’s leg isn’t broken, it’s lost altogether.  Because of the miracles of modern medicine, materials science, and electronics, Dave has the opportunity to receive a next generation, computer controlled, prosthetic leg.  While this new leg is a marvel of modern technology, and it will, eventually, give Dave the ability to walk, he isn’t going to just put the thing on and run a marathon.  There will be months of physical therapy and rehab, and even then, because this isn’t Star Wars, Dave’s new leg is never going to be as good as the one he was born with.
That is more like what I expect from receiving a cochlear implant.
    I might be back to work a week or two after surgery, but even after it gets “switched on,” my hearing isn’t going to magically return to normal.  There will be months of rehab as my brain re-learns how to hear.  While I have hope that I will eventually be able to understand conversations, listen to the radio, and even listen to music, I know that my hearing may never be as good as it once was.
I am trying to “manage” my expectations.

I hope that you are too.

 

 

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A New Cyborg Adventure

 
    In June of 2011 I wrote “Reflections on Going Deaf,” where I described how my hearing was progressively fading.  I had seen a specialist (ear, nose, throat – an Otolaryngologist ) who sent me to see “the guy” at Ohio State Medical Center (who only does ears – an Otologist).  His professional opinion was that there was no discernable cause other than “sometimes this just happens.”  He suggested that I just make the best of things with hearing aids and expect that sometime in the future I would need to have a cochlear implant.
 
    Since then, I got more powerful hearing aids, our family moved to the Massillon/Canton area and I changed audiologists (the guys that program my hearing aids).  Like everyone always is, Walt, my new audiologist, was surprised at how quickly my hearing was being lost.  He suggested that given the importance of hearing, I ought to get a second opinion regardless of how good the OSU guy was.  He recommended that I see specialist that is “the guy” in this area and I did.  Last August I drove over to Dr. Lippy’s office in Warren, Ohio had a bunch of testing done and saw Dr. Berenholz (Dr. Lippy is retired, I think).  There I got just about the same news that I had at Ohio State.  No real reason for my progressive hearing loss could be identified but some people, like me, are “just lucky.”  Yippee.
 
    What’s more, their evaluation determined that I had already lost so much of my hearing that I probably qualified for a cochlear implant and insurance would likely pay for it.  At that time, there were still a few tweaks left that we could do to make my hearing aids last a little longer so we agreed to meet again in six months.  We met again last month and did the testing all over again.  Not surprisingly, my hearing has continued to get worse.  With my hearing aids on, sitting in a soundproof room, they read random sentences to me (through a speaker) and I was supposed to repeat as much as I could understand back to them.  I got 40 percent.  It was time to see if our insurance would cover the implant.
 
    For those of you who have never had hearing loss I want to try to express what my loss might “sound” like to you.  I have no hearing in the high frequencies at all so even hearing aids don’t help because it doesn’t matter how loud you make it.  I can’t hear mosquitos or flies or bees.  I can’t hear the microwave beep or the smoke alarm or my alarm clock.  I can’t hear a lot of bells or the warning beep that tells you that you forgot to turn your headlights off.  I can hardly hear sopranos at all and pianos sound strange.  At my kids’ band concerts I can hear the percussion and the low brass, trumpets sometimes, and woodwinds almost never.  Music doesn’t sound musical, and even familiar songs sound uncomfortably strange and out of tune.  My car radio is rarely used because I can’t listen to music and while I can generally hear talk radio when the car is sitting still, the ambient noise when in motion makes everything unintelligible regardless of how much I turn up the volume.  A lot of times what I hear sounds like my head is inside a cardboard box.
 
    Last week Dr. Lippy’s office called and said that our insurance would cover 100 percent of a cochlear implant minus a sizable deductible.  I have an appointment at the end of the month to get a CT scan of my head and more tests.  After that I have to see my family doctor, have a physical and get his permission, and then we can schedule the surgery.
 
    After the surgery, there are four weeks of recovery before I return to the office and they turn the implant on for the first time.  Then, there are six months (or more) of physical therapy as my brain (re)learns how to hear.  I admit that I am a little excited and also a little afraid.  I look forward to being able to hear again, especially to the possibility of hearing music again but I also worry.  What if there are side effects?  What if it doesn’t work?
 
    In any case, the process has started.  I am, gradually, going deaf and so I will need the implant to function in a hearing world.
 
    In the immortal words of Buckwheat from the “Our Gang” television show… “I don’t know where we’re going, but we’re on our way.”
 
 
 
 

 

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Reflections on Going Deaf

 
    Okay, to be perfectly honest, I may not actually be going deaf, but sometimes it feels that way.  I have cousins who were born with profound hearing impairments and they manage quite well, and often excel, in life with courage, determination, sign language and cochlear implants.  While I know them, this was always a sort of alien world to me.   I always had decent hearing, not like my wife who can hear every conversation anywhere in the house, but at least good, average hearing.  At least it was until about eight or ten years ago.  At first I noticed that when I went to the barn each morning to care for our animals and to do my chores, instead of the quiet that I normally enjoyed I could hear a quiet ringing in my ears.  Not long after, I was diagnosed with tinnitus and a very mild hearing loss was considered to be the likely cause.
 
    Sometime later, my tinnitus was considerably worse and so was my hearing loss which led to my first hearing aid (only one at first because our insurance would only pay for one every two years).  That helped, but in less than two years I needed the other hearing aid and we paid for it out of pocket.  At that point my audiologist wondered why a guy who was barely over forty had hearing loss that looked like he was sixty or seventy.  To answer that question he referred me to an ear, nose and throat specialist, who saw me, had an MRI taken of my head and then referred me to another specialist who was even more specialized (a special, specialist, I guess) and who only did ears or something.  I want to be clear, I never really liked to listen to loud music, I was in the Army Reserve but I was never in the artillery or subjected to a huge amount of noise other than our annual rifle qualification.  I never worked in a factory where I was around loud noises (on a regular basis) and although I mowed the lawn and used power tools, I don’t think that I used them any more than most people.  Ultimately, the special specialist’s determination was basically, “We just don’t know.” And that’s where I am today.  I wear two hearing aids but each year I can notice my hearing getting worse than the year before and there is nothing that I can do about it.
 
    Two weeks ago, along with hundreds of my colleagues, I attended our Annual Conference, a gathering of clergy and laity representatives from United Methodist churches from across East Ohio.  In settings like that, in a huge auditorium with lots of background noise, my hearing is practically useless.  Hearing aids amplify every noise and, unlike normal hearing, you are utterly unable to distinguish one conversation from another so what I hear is often just a muddle.  I could generally hear the speakers who were wearing, or who were in front of, microphones but when questions came from the floor or from someone on stage without a microphone, forget it.  I also miss many things that are said when a speaker lowers their voice for effect.  Often I can figure out parts of what was said, but not always and as a result I generally miss jokes and funny stories because I can’t hear the punch-line even if I could hear the joke.
 
    Last week, we picked up our son from a week at church camp.  He had spent a week playing in a small band and the band was playing the music for a group of teens who had written their own musical.  Because the acoustics in the barn where the production was held were like many large auditoriums, even though there were two stage microphones, I understood almost none of the dialog nor any of the words of the songs.  I was glad that my son played in the band and it wasn’t his hard work that I missed out on.
 
    In the next few weeks I will see my audiologist for my annual checkup.  I will get another hearing test and he will send the results to the special specialist just in case there is anything that can be done (but there never is), and I will have him turn up the volume on my hearing aids…  again.  I know that soon my hearing aids won’t be able to get any louder and I will have to buy new, bigger and uglier hearing aids but it can’t be helped.  I work in a job where hearing other people is pretty important.  For now, with my hearing aids, things are not perfect.  I miss a lot but with the patience of my family and the people of my parish, I get along fine.  My experience with hearing loss does have one benefit I suppose.  My understanding, empathy and patience toward persons with hearing loss and all disabilities is growing and I see how much that those who are not disabled often just don’t get it.  I do worry about the future.  If I have the hearing of a sixty or seventy year old at forty six, then where will I be when I reach sixty or seventy?  I suspect that I may be having some serious conversations with my cousins about what it’s like to live in their world.
 
 

 

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