Hearing Without My Ears

Early each morning, the Jewish prayerbook prescribes a blessing for the wonders of the human body:

 בָּרוּךְ אַתָּה ה' אֱלהֵינוּ מֶלֶךְ הָעולָם אֲשֶׁר יָצַר אֶת הָאָדָם בְּחָכְמָה וּבָרָא בו
…נְקָבִים נְקָבִים חֲלוּלִים חֲלוּלִים

Blessed are You, O G-d, Ruling Spirit of the Universe, who has formed human beings with wisdom, creating us with countless holes and orifices.

It continues: 

שֶׁאִם יִפָּתֵחַ אֶחָד מֵהֶם או יִסָּתֵם אֶחָד מֵהֶם אִי אֶפְשַׁר לְהִתְקַיֵּם…
.וְלַעֲמוד לְפָנֶיךָ אֲפִילוּ שָׁעָה אֶחָת
.בָּרוּךְ אַתָּה ה' רופֵא כָל בָּשר וּמַפְלִיא לַעֲשות

If one of them should be open when it should be closed, or closed when it should be open, it would be impossible to exist or stand before You even for a single moment. Blessed are You, O G-d, Healer of All Flesh, who performs wonders.

That’s right, it’s the infamous Prayer for Going to the Bathroom, known as the Asher Yatzar. It’s a blessing of wonder and awe for our bodies that work as amazingly well as they do much of the time. It also indicates an awareness that when something malfunctions in these tiny valves, vessels, organs, and tissues, the whole system is impacted.

My teacher Professor Eugene Borowitz ז״ל used to say that he always considered the Asher Yatzar to be rather innocuous—and perhaps even an example of the Jewish overkill when it comes to saying blessings—until he developed a kidney stone. That’s when he realized that something no larger than a grain of salt could bring a healthy man to his knees, eyes tearing in pain. After that, he said, he finally understood this prayer, and its words became for him one of the most spiritually profound passages in the entire siddur.

For me, the problem is further up the body. The human ear is a miracle of delicacy and intricate sophistication. Sensations on the eardrum trigger vibrations on tiny bones in the middle ear (the malleus, incus, and stapes), which in turn stimulate the cochlea. The movement of the liquid in the cochlea sends signals to the auditory nerve, and the brain decodes these signals, providing hearing. I don’t think I can explain what happens in between each of those steps—why one signal sounds like an oboe and another like a fire alarm and yet another like my grandmother’s voice. Still, the whole marvelous system is sublime, and each of us carries this technology around in our head.

But years ago, an audiologist showed me an x-ray of the bones in my middle ear—and how they were gradually ossifying, and thus losing their sensitivity. They’re so small and located so far inside my head, the doctor explained, that I was not a candidate for surgery. My hearing was only going to get worse. It’s the family curse.

But on Thursday, I’m confronting the curse head-on. I’m headed to Massachusetts Eye & Ear for cochlear implant surgery.

The procedure takes place in two stages. On Thursday, they’ll implant a magnetic transmitter in my head, with the promise of setting off security detectors at airports for the rest of my life. A few weeks later, I’ll be fitted with an external processor (it looks like a hearing aid) that works in tandem with the implant. Effectively what happens is: these devices bypass my ear and send electronic signals directly to the brain, which the brain decodes as sounds. Hearing without using your ears. Unbelievable!

There is a long rehabilitation period. The surgeon, Dr. Felipe Santos, tells me that when the processor is switched on a few weeks after the implantation, I’ll notice an immediate impact (in my left ear—you only implant one ear at a time), but it will be far from perfect. Then, over a series of weeks and months, my brain will adapt to this new way of hearing, and it will get better and better.

It won’t be perfect, but perfection is a stupid standard to live by. It will be much improved, G-d willing, and will make me a lot more functional in classes, meetings (in Buber’s sense of the word), and generally, in life. It will mean an enormous difference to my family, whom my hearing loss impacts perpetually.

I’m anticipating the surgery with excitement and only the normal amount of trepidation and nervousness. I’m curious about voices and music will sound like when my left side is operational once again. They warn me that at first sounds will be “tinny” and “robotic” – I’m imagining the sounds of voices through a vocoder—as my brain learns how to hear all over again.

Despite all the reading and preparing that I’m doing, I’m not 100% sure what to expect—but I’m going to ride this like a roller coaster, and hold on tightly.

But a few things I do know. We live in an unbelievable, breathtaking time, when technology can restore a lost or damaged sense. And I know that I’m astoundingly fortunate and privileged—that this technology is not readily available to millions or billions of other people around the globe, and that the appropriate response to that is radical gratitude.

And I know one more thing: in a few days, when I say the Asher Yatzar, it’s going to have all sorts of nuances that I never knew were there.

It’s going to sound different.

Invisible Disability

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.

"Disability" Redux

[I wrote this piece about disabilities about seven years ago, when I was learning how to confront my hearing loss. Since then my hearing as deteriorated, and it impacts every class I teach and every interaction I have. As you may imagine, it’s terribly frustrating. I felt like returning to this essay, to see how I still feel about the sentiments I wrote in 2012. And I’ll have more to say about this subject in the weeks ahead, so it seems like a timely revisit.

Instead of just reposting the piece, I’ve added some contemporary glosses by a noted scholar. (Not the same ‘noted scholar’ who commented on Woody Allen’s legendary Hasidic tales, but perhaps descended from him.)]

Disability

The angel wrenched Jacob’s hip at its socket…
The sun rose upon him as he passed Penuel, limping on his hip…
Jacob arrived  שָׁלֵם [whole] at the city of Shechem.
(Genesis 32:26, 32; 33:18)

All of us are damaged in some way; it’s a fundamental part of being human. Also human is the way in which we confront our brokenness; the gracefulness with which accept our imperfections.

[GLOSS: When I originally wrote this, some of my readers objected to the word ‘brokenness’ as being harsh and implying a value-judgment. There’s a stream of thought among disabled communities that one should “embrace” her or his disability. But “brokenness” is precisely what I mean. When I consider what has become of my hearing, “broken” and in need of “fixing” is exactly how I feel about it.]

My personal disability is rather awkward because it plays itself out so publicly in my life – in the classroom, in meetings (in Buber’s sense of the word), in our sanctuary, and even across a hospital bed. I started losing my hearing a few years ago, at exactly the same age when my father began to lose his. It began to impact my effectiveness in my work. I would get frustrated, angry at myself. I even had a moment of “bottoming out”, to use the language of addiction and recovery, when I sat in the front row for a lecture of which I heard practically nothing. It rocked me deeply.

[GLOSS: What I thought was “bottoming out” was just the beginning. It’s become commonplace for me to attend a crowded party and not be able to hear a thing, or stubbornly go to concerts and strain to recognize songs that I know really well.]

For a short while I felt sorry for myself. Then I started visiting audiologists and figuring out how I was going to move forward. Hearing aids help, although to my chagrin and frustration they have remained “aids” and have never given me 100% of the hearing I’ve desired. This was particularly frustrating, because of all our cherished senses, hearing is especially precious to me. You who know me know that for me listening to music is one of life’s deepest pleasures. The diminishment of that pleasure is a serious heartbreak. 

[GLOSS: That observation was important. I still can’t really explain why contact lenses give me 20/20 vision, but hearing aids don’t deliver “20/20 hearing”, so to speak. Family and friends of hearing-impaired people need to understand that.

All of us have fears that awaken us in the middle of the night, when the day’s distractions have dissolved away. Lately mine is the prospect of what my hearing loss will be like when I’m 50, or 60, or beyond. Will I move from “hearing-impaired” to full-fledged deafness? Will I be able to function at my job? Those are real fears I carry in my soul, with some degree of anguish.

But these days those fears don’t slow me down. Quite to the contrary. I’ve become more and more comfortable with saying to students in my classroom, “This is what I’m working to overcome. This is my disability. What’s yours?”

[GLOSS: Some days I feel the early optimism of this piece fading. But I have never been shy about announcing that I’m hearing impaired. It’s become quite standard for me to open a class or launch a speech with a disclaimer about my disability. Not in a self-pitying way… just to clue people in.]

In fact, I find an enormous amount of strength coming forth from our tradition. Personal prayer has become far more intense since I’ve come to grips with my disability. The morning prayers, for instance, contain a remarkable passage that reflects on the body’s delicateness: “You have made the human body filled with tiny holes and orifices… If one of them were opened when it should be closed, or closed when it should be opened, we wouldn’t be able to stand before You for even a moment.” When I reflect that my hearing loss stems from the ossification of the miniscule bones in the inner ear, I share the wonder of the siddur’s poet. It’s a daily miracle how much works so well!

[GLOSS: Still true. And yet… I look at the birchot ha-shachar, the daily blessings of awe that are found early on in the Jewish siddur. We bless G-d for being pokeach ivrim, “the One who gives sight to people who are blind,” which of course is meant as a spiritual metaphor. Why doesn’t it say mashmiya chershim, “the One who causes deaf people to hear”? Especially since “to hear” – as in the Shema Yisrael – is such a crucial metaphor in the Jewish prayerbook? I’ll write more about this soon, but I’m curious if you have an insight about this.]

In the Torah, many of our ancestors carried some sort of brokenness. Isaac was blind; so too, perhaps, was Leah. Jacob’s leg was wrenched in his wrestling with the angel; perhaps he limped for the rest of his life. Most famously, Moses stood before G-d at the burning bush and said, in essence, “Why would you choose me to speak before Pharaoh?  After all, my lips…” The Torah is enigmatic about Moses’s shortcoming: Did he stutter?  Did he have a disabled palate? Or was he merely terrified of public speaking? It matters—but not as much as G-d’s response to him, which is, in essence, “I don’t make mistakes. I’ve called you to do a job, to speak truth to the power that is Pharaoh. And if you trust Me, then when the time comes we’ll find the words, together.”

[GLOSS: A partial list of disabled people from Jewish tradition (note the surprising absence of deaf characters):
Isaac – blind
Leah – “weak eyes”
Jacob – walked with a limp
Moses – speech impeded
Samson – blind
Ahiya the prophet – blind
Rabbi Yosef (Nedarim 41a) – blind
Rabbi Sheshet (Berachot 58a) – blind
Levi (Ta’anit 21a) – could not walk
The Maggid of Mezeritch – walked with a limp
R. Simcha Bunem of Peshischa – blind
… I know there’s so many more. How many can you add to this list?]

I have no delusions (trust me) of being a Jacob or Moses or Isaac or Leah. But I study their life-stories and try to learn their lessons. Isaac found the words to bless his children. Leah went on to find love and, if you believe the midrash, she also found her sister. Jacob, even with his limp, is still called shalem, “whole” – a poignant reminder that these finite bodies are mere containers for the infinity in our souls. And Moses, G-d’s servant and partner, spoke through damaged lips the words, “Let my people go.” He even found the strength and confidence to lead a people through the wilderness.

I imagine that each of them felt sorry for themselves when they first confronted their disabilities. Maybe their communities supported them in their struggles (maybe they didn’t). But eventually, each of them found a way back to Life; to saying: This is Who I Am. No longer will it hold me back, but I’ll offer myself, anew, in all my brokenness, to do what I was designed to do all along. In faith and tradition and the love of others, I will find my strength.

This is my brokenness. What’s yours?

[GLOSS: Corny ending, perhaps. But something cool has happened over the years: when I talk about my disability, I’ve found that students of all ages have opened up. Some have come to me and said, “I’ve been faking it for years; I’m going to make an appointment with an audiologist.” Even more gratifying are those whose hearing is fine, but who make the connections to their learning disability, or whatever. Here’s to each of us sharing our own vulnerabilities, so that “maybe more can come out of their hiding places” (to borrow a line from a Danny Siegel poem).