where do we go from here?

I'm about to embark on something that I think will be life-changing.  I've spent my life traveling, and I see life as a journey, so this is just a juke to the left:   the road curves up there, and I am going in another direction.

I've been hard of hearing since birth, a sensorineural hearing loss that runs through our family - my mom had it, so does my brother, an aunt, some cousins.  We all say "what?" a lot.  It's also progressive (or regressive, I guess, really) and has been getting worse throughout my life.  Fifteen years ago I began to really struggle to hear on the phone; ten years or so ago I stopped using the phone handset at all and in the last five years or so I stopped even being able to understand voice mail messages.  Without context, word comprehension is really difficult for me.

I have been to two movies in actual theaters in the last twenty years:  The Two Towers, and let's face it, I didn't need to hear that.  Read the book more than once.  And Gravity, which is not exactly a verbal movie.  It was quite easy to follow just by watching.  But mostly I watch things at home, with closed captioning.  And when I'm on the treadmill, so it's a twofer.

 Most people who know about my hearing loss are helpful:  I've had co-workers come to conference calls with me just to repeat things I don't hear; people try to speak clearly and with enough volume that I can get along.  Truly, my co-workers and their patience and their willingness to help have been one of the really gratifying things about the last few years.  People can indeed be really good.  But even when they're trying, I often can't hear - one call not long ago, people kept talking at the same time, which *ensures* that I won't hear.  I hung up the phone, shut my office door and quietly lost my shit for about fifteen minutes. 

Strangers who DON'T know that I'm hearing impaired can be jerks.  People are willing to assume that I'm stupid because I didn't know what they said; impatience is really common and I've often just turned around and walked out of stores rather than deal with people who would act that way - and honestly, it's astoundingly bad customer service.  But people do just assume that everyone can hear.  At work, guess what we have to do to request an accommodation for a disability?   Yep.  We have to call on the phone.

So I've spent years developing ways to cope.  Workarounds, asking kind people for help.  Being upfront about having poor hearing and asking people to repeat things.  At airports I hang out right next to the agent's desk and ask them to tell me when I can board (among other things, I've boarded early more than once).  And I wear hearing aids and I never go anywhere without extra batteries and I keep that little kit close by me so I can change out the silicone domes or the little filters at the end, and I just keep on keeping on.

But last summer I had my checkup and my doctor asked me whether I'd had my hearing tested recently.  I said no, it had been a while (usually I wait till my hearing aids die before I go in again) and that I'd received a letter from my healthcare insurer telling me that my audiologist was no longer in-network.  He gave me a referral to an ENT specialist who worked with an audiologist as a team, and was in the same medical center as he (my regular doctor) was in.  So I made an appointment and had a hearing test.

They both seemed pretty appalled that I hadn't already been referred for cochlear implants.  After Dr D (audiologist) showed me the graph of my hearing test results I could see why - it's far worse than I realized.  So I got another referral, to a clinic at the University of Minnesota where they specialize in cochlear implants.  A meeting with the doctor there, another two-hour appointment with another audiologist in which we determined that in word comprehension I do particularly badly. In the absence of context, my word comprehension is abysmal.  The threshold for qualifying for cochlear implants is now at 60% word comprehension.  My score was 19.

It's amazing how badly you can function on these scales and still get by; but I know that most of the people that I work with would probably be astounded if they knew how little I hear because I KNOW the context and I can usually interpret and extrapolate and figure out what the heck we're talking about.  But it was still alarming to hear just how badly my ability to comprehend what people said was.

The flip side of that is that it means I have LOADS of room for improvement, and the potential for the impact to be truly significant.

So today I visited the audiologist again and we selected my devices.  I had my head CT-scanned (my neural anatomy is normal!) (Other than not working).  And I met with the surgeon again.  We are talking, once again, about doing bilateral implants all at once - both ears at the same time.  It's a big deal, but the rehab should go better, and the whole process will be faster.  Only that if anything goes wrong and I end up deaf and untreated, well, there I'd be.  I don't know what I'd do.

But I'm taking the turn in the road.  I may chicken out and do one ear at a time, I'm not sure yet.  But I'm going there, jumping into that alternate universe; a universe where I hope I'll be able to hear much more nearly like other people do.  

Buckle up.