Who gives a person speech? Who makes a person mute or deaf, seeing or blind?
(Exodus 4:11)
So when you see your neighbor carrying something, help him with his load
And don’t go mistaking Paradise for that home across the road.
(Bob Dylan, “The Ballad of Frankie Lee and Judas Priest”)
My hearing loss began to manifest itself around the time I was thirty-eight. It probably was screwing up my life for a while before I really began to notice that I couldn’t hear people sitting across the table. Or, as those of us who are accomplished in the art of self-denial might eventually realize, perhaps not everybody in my life was mumbling all the time.
Thirty-eight was pretty much the age my Dad was when he started losing his hearing, so maybe somewhere in the back of my mind I had an ominous awareness that this might be coming.
But I didn’t totally lose my (well-attuned) sense of absurdity. The first time I went to an audiologist, it was with a big gulp, and the sudden slam of reality when she told me the diagnosis. “Give it to me straight,” I said to her. “Does this have anything to do with playing Metallica really loud in the car?”
“How clear can I make this?” the doctor replied. “It has nothing to do with that. It’s just your crappy genes.” I thought about this for a minute, recognized a small victory, and pumped my fist and replied, “Yes!”
I tell that story because I’d hate to think I’ve lost my sense of humor about stuff that can be quite upsetting. And because for the rest of this piece (and a few more to come) I want to record some observations on my experiences. It’s therapeutic for me to write, and I’m glad for my friends to understand it all a little better. And if someone else can relate to this by seeing herself or himself in this saga—well, all the better.
(1) Hearing loss is an “invisible disability.” That is to say, when you encounter such a person, they don’t necessarily look disabled. I don’t use the word “deaf” to describe myself, mostly because I’m not totally deaf; hearing aides make me functional. So I’ve got to explain to people—many times a day—that I’m hearing impaired.
Competitive suffering is always a bad idea (for individuals and for communities), so I won’t compare one disability with another. But when I’ve needed to advocate for myself and others, I’ve often thought, “If I came into this room in a wheelchair, you would bend over backwards to accommodate me. Why must accommodating someone who’s hard of hearing be so difficult?”
That’s the nature of the invisible disability. People can’t be expected to respond or adapt to it until it’s explained to them. And everyone needs to be trained to be far more sensitive to that which is hidden. Other common invisible disabilities include: people with acute anxiety, or living with constant pain, or who have an eating disorder, or depression, or countless other disabilities that are not readily apparent, but make navigating daily life so challenging.
More than that, you need to remind people—even loved ones—that they have to adapt, because that which is invisible is so easy to forget.
(2) Hearing aids suck. I should be a bit more grateful; after all, I really couldn’t function without my hearing aids. But here’s the thing that it took me a while to learn, and even longer to explain to family and friends: hearing aids are just aids, that’s all.
Here’s what I mean. As a long-time wearer of eyeglasses (since first grade; I’m hardcore), you realize that glasses or contact lenses give you back 20/20 vision. But for reasons that I still can’t quite articulate, hearing aids are just aids; they don’t give you “20/20 hearing,” so to speak. Batteries die, they get clogged with wax, and even when they’re fully operational… they’re only satisfactory, not great.
(The fact that they’re a fortune, and insurance companies for some godforsaken reason don’t cover them, is a different rant.)
(3) So you learn to adapt. When I walk with someone, I make them stand on my right side, since that ear hears better. When I enter a room for a lecture or meeting, I try to sit strategically—close to the speaker, or in a place where I can favor my right ear.
But it gets more difficult. As I’ve felt my hearing degenerate, I’ve compensated in other ways. Take the phone (please). I haven’t held a phone to my ear in years. I put on the speaker, and try my best to hear it. If it’s a really important call, I get into the car, turn on the Bluetooth, and crank the volume. Just ask the neighbors—they’ll tell you how effective this technique is.
A few years ago, I got an adaptor that sends my phone via Bluetooth straight to the hearing aides. This was pretty good at first. (I told my mother-in-law Paula, “Your voice right now is going directly into my head. Which is, of course, every mother-in-law’s fantasy.”) But that adaptor no longer suffices, because I haven’t just lost volume, but also accuracy. So it doesn’t matter that the volume is turned up to 11; it has become harder to differentiate words.
(4) I used to say “I don’t fake it.” When I was new to all of this, I insisted that I never pretended to hear something that I didn’t. I’d patiently ask people to repeat themselves; I’d explain that I don’t hear well.
All I can say is, those days passed a while ago. I fake it all the time. I’m neither proud nor ashamed of that; it’s simply a survival technique. After all, how many times can you ask people—a waiter, a salesperson, a classmate—to repeat themselves? Eventually, you move on; this isn’t a new game show, “How Long Can You Stand It?”
And so, in more and more conversations I satisfy myself with “getting the gist of it.” Which can probably suffice at a cocktail party or backyard barbecue. It’s less satisfactory at a parent-teacher conference. And it’s really a problem, say, when you’re a rabbi and you’re visiting someone in a hospital bed.
Faking it carries its own risks, of course. When you’re following 40% of what someone is telling you in a crowded, noisy room, you put on a serious, sober expression, and hope that the other person didn’t just say, “My sister had triplets.” You smile, and hope they didn’t say, “My uncle had a stroke.”
(5) Music is heartache. Those who know me know that music is one of the primary pleasures in life. I have a perpetual soundtrack in my head at any given moment. Music stores (there’s a thing that used to exist that you can tell your grandchildren about) have always been my favorite hangouts.
But the nature of hearing loss is that you lose certain frequencies more than others. So music sounds weird, unfamiliar. Here’s a case in point: I know the repertoire of the Grateful Dead backwards and forwards. So imagine how disorienting it can be to have a song come on the radio that I’ve heard a thousand times—and not be able to recognize it or make out the lyrics. This has started to happen more and more often, and it’s very disorienting and more than a little heartbreaking. (And spare me your snide comments, like “See? There is a bright side!” I’m trying to make a point, but there’s always someone who wants to rag on Jerry and the Dead…)
So I share these notes with you, because maybe it will help you with your own load. If you’ve experienced some of these challenges, know that I’ve been there too. If you’ve got someone in your life who struggles, maybe this can give you a bit more understanding.
As for me, the time has come to do something about it, because it’s really grown to be quite intolerable. More on that in the days ahead.
