As a lot of you know, I’ve been pretty ill this year, at least since March of 2013, and Elisa and I have spent a good portion of our time bailing on commitments to hare across the country meeting with doctors and groups of doctors and witch doctors. We’re going to pause our efforts for a little while, following my visit to the Mayo Clinic last week, and so this might be a good time to bring everyone up to speed on what’s been happening and what the future may hold.
In a way it began 7 years ago, when I had my first vertigo attack and first heard a buzzing sound in my left ear. At the time this was diagnosed as endolymphatic hydrops, or “Ménière’s Disease.” While lots of people in America are diagnosed with Ménière’s disease every year, only a small percentage actually have the condition – most have a small imbalance caused by a passing virus, or an opportunistic infection, or autoimmune disease of the inner ear. So who knows what I might have had? It seemed like a minor distraction, and so I went on living with it.
For 5 or 6 years I’d occasionally suffer vertigo attacks (where the room would spin for 4 hours and I was convinced all the time I was falling through space, even when comfortably tucked-in on the couch), dizzyenss (the world jumped when it shouldn’t have) and a roaring and whining and grinding sound in my hears that, as I conceptualized it at the time, often grew so loud I had trouble hearing voices around me, or making sense of what they were saying. Doctors at Mass Eye & Ear assured me there was nothing I could do to treat the symptoms that I wasn’t already doing.
But just last year, sometime in March, my condition went from manageable to unmanageable. My hearing began to fluctuate wildly and I began experiencing vertigo attacks once a week, then once a day. I couldn’t walk or drive for dizziness and I felt, obviously, anxious and overwhelmed. We started going to doctors, many of whom had ideas, and many of whom suggested tests (all of which we performed, from spinal tap to videonystagmography to scan after scan) but none of whom were able to offer a definitive diagnosis or suggest effective treatment. This wasn’t typical for hydrops, but didn’t seem typical for anything else either.
What was baffling to us all this while was that I seemed, at times, to feel just fine. The hearing loss would evaporate from both ears, my balance would return, the room wouldn’t spin. Then, increasingly, and without warning, all symptoms would return as aggressively as they ever had. I quit teaching anywhere I had to drive to, started exploring freelance work, but was and am still anxious about the future, unsure of exactly what I’m able to do. Add to that the constantly changing nature of the condition–that when I go to sleep at night, I don’t know whether or not I’ll be able to hear or walk well in the morning–and you’ll begin to see how a rush to diagnose and treat this condition consumed the whole of our lives. We visited the House Ear Clinic in LA, Yale New Haven, and most recently the Mayo Clinic in Rochester, MN.
The folks at the Mayo Clinic cannot prove a diagnosis one way or the other either (no surprise there) but they strongly suspect that what I’m suffering is a form of endolymphatic hydrops after all, but of a highly rare bilateral and intractable variety. There is no other patient with my history but, as the doctors helpfully add, every case is different. If they end up being right (and although we’re taking a break, we’re not through soliciting new opinions) then there is a very good chance that someday soon – maybe a year from now, maybe ten years, maybe five days – I’ll lose my ability to understand human speech entirely–it will disappear and won’t come back. At this point we will begin to explore implants, though neither implants or more powerful hearing aids are silver bullets – both take a long time to adjust to and will not approximate the hearing I have lost. I will also continue to experience vertigo attacks and dizziness. I’m going to begin physical rehabilitation, on the Mayo Clinic’s orders, in hopes of repairing some of the vestibular damage that’s been done, and to strengthen the tools of balance I won’t lose – my eyes and my sense of touch – in hopes of at some point walking without the cane I now so often find I have to use.
What’s most maddening about all this, of course, is the uncertainty. At any moment the world might start spinning, or it might not. Any song I hear may be my last. Yes, this is true for all of us, to some extent, but in my own case it has been preventing me from doing the things I used to enjoy—both the illness and the worry keep me from seeing plays (how could I hear them?) or going to readings, or eating or drinking in bars or restaurants, where the level of ambient noise would overwhelm my hearing aids. Both the illness and worry make my heart rise up in my throat when I walk into a classroom (what if I have a vertigo episode and have to call-off class? And then how would I get home if I can’t use the phone, can’t see straight to text … ?)
Having returned from Mayo with the sword of Damocles still tenuously poised above me, and with my hearing disappearing further every time it disappears (today, even with hearing aids on high volume, I’m having some trouble understanding what Elisa says, and this is heartbreaking of course because I’ve been away from her for weeks) I’ve made what I hope is a useful decision. I’m going to try to re-enter life as much as possible, to try to do everything I used to do, until I become convinced that I can’t. Instead of resting on a bad hearing day, hoping the rest will turn my hearing better, I’m going to work. Instead of staying home during events where I can’t hear well (any time there’s more than 4 people in a room, or the room is large, or the people are soft spoken, or music plays in the background, or the walls and floors aren’t sufficiently sound-absorbent) I’m going to try going anyway. Instead of quitting teaching, I’m going to persist with my Lighthouse classes, though not with The School of Mines, much as I’ll miss it. Even though it can exacerbate the symptoms, I’m going to return to exercise, with the aim of not being exhausted all the time (people with balance issues tire easily) and in hopes that being in better physical shape will help me stave off the catastrophe that’s been predicted for me.
So one of the reasons I’m writing this note is to update all of you who’ve asked how things were going (I appreciate those notes, and I’ll remember them) and to thank everyone I see day-to-day, or correspond with spottily, for their patience and their understanding, both with me and with Elisa, who, like the rest of my family, has been a rock for me. I’m also writing to beg that your patience and your understanding be extended indefinitely. I want to be able to work and live and play in the world, but it might be a little trickier for me from now on and I’ll require occasional – hopefully very occasional – special consideration. I may not hear you well when we talk. I may not be able to call you back on the phone. I may not even be able to email about something urgent right away if I’m too dizzy to look at the screen. But I promise to try my best to be the person I always was, at least as much as I’m able. And who knows what kind of hope we might turn up if we keep looking for it?
Wish us luck.
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