Not Fade Away: A Memoir of Senses Lost and Found (15 page)

W
hisper” is a word that sounds like what it is, the kind of word that creates itself when said. Whispers connect people with a soft intimacy that is quite unlike anything else.

Little girls are always whispering to one another. At summer camp, in our cabins at night, when we were all supposed to be sleeping, we would huddle on someone’s bunk bed, sneaking candy from the care packages that our parents would send us and speaking to one another in urgent whispers. We would try to suppress our giggles so that the patrolling counselors wouldn’t interrupt us and make us go to sleep. We would tell ghost stories and talk about the boys we had crushes on.

We wanted to whisper all night; it was so wonderful to lie there and reveal ourselves to each other, the whispers somehow making it easier to tell things that were hard to say out loud. There would be a great chorus of whispers after taps was played over the loudspeaker, signaling bedtime, then sometimes a long, solo rising and falling as one of us recounted a tale. Late at night, much later, our soft, drowsy sentences soothed each other to sleep.

There were the wonderfully scandalous whispers of my youth, too: Bored at synagogue, a Bar Mitzvah, a school assembly, or any and all adult gatherings where we were supposed to behave, my brothers and friends and I would whisper to one another, “Is this over yet?” “This is sooo boring,” “How can we sneak out?” We would whisper jokes and snide remarks, trying to make one another laugh to interrupt the silence, reveling in the tiny anarchies of our whispers. And there were the boys, my school-age sweethearts. Their lips against the lobe of my ear. Their breath, warm and damp, their sweet words just for me.

I can’t remember the last whisper I heard, though it must have been more than a decade ago. I realized in college that I needed to keep my hearing aids in if I wanted to absorb the quiet compliments and pleadings and encouragements that mark the change from childhood crushes to more adult intimacy. Without my consent, without preparing for this specific loss, sweet nothings simply became nothings.

The whisper is lost to me. One of life’s greatest yet most common and simple intimacies has vanished.

Most people around me know the futility of whispering to me. These days, on the rare occasion when I am whispered to by someone who has just come into my life—a new boyfriend, a fresh confidante—it is nothing but hot air being blown into my ear canal. It makes me sad, but when I see people whispering to each other, I don’t begrudge them the act. I do feel a longing for what I can no longer hear, but, even more, I feel joy that for even a small piece of my life I was able to experience whispering in all its forms.

These days, I notice how quickly a whisper passes between people, how it is given and accepted and is gone. Sometimes I
want to tell those people to take just a few more seconds to appreciate that whisper and its strange, gentle force. I’d like to go back and find those little girls in their cabin, on that bunk bed in the dark, and tell them to stay up tonight, to whisper to each other, whisper as long as they
can.

C
aroline and I have found our own way to whisper.

Every couple of weeks, we have a sleepover. As we lie next to each other in my bed, she’ll wait for a moment while I take my hearing aids out and place them with my glasses on the nightstand. Once the lights are out we practically transform into preteen girls having a sleepover, though with me no longer able to see or hear, we are left to whisper our secrets using only our hands. At first, Caroline learned sign language from me, and then continued, for me,
for us,
and now we are both practicing our tactile sign, the language used by people who are both deaf and blind. This way, no matter how dark or noisy it is, or however limited my hearing or vision becomes, we will always be able to talk to each other.

We’ll lie facing one another, and she’ll take both of my hands and place hers inside of them. As her hand begins to take form, I’ll start to sound out the word she is spelling in my hand, listening intently with my palm and fingers, closing my eyes to help me focus. While I hold and follow the movement of her hands, Caroline will bring her pointer finger to her chest, and I’ll speak
aloud what she is signing. As her pointer finger continues into its next sign, she’ll wait for me to speak each word to be sure that I have understood her.

At first we were terrible at it, and I would start to giggle at every mistake—most of them mine—and though I couldn’t hear Caroline, I knew she was giggling, too, because I could feel the quick little bounces her upper body would make against the bed. Like a child’s game of telephone, the more confused we got, the funnier it was, and each mistake would make us laugh harder. Caroline could hear the sound of my laughter loud and clear, but she knew that I couldn’t hear hers, so she would take my hand and place it against her neck right at her vocal cords, so that I could feel her laughing, which made me laugh even harder.

We’ve gotten better at it, and sometimes I’m astonished at what we’ve accomplished in the complete silence and darkness. Now I know that I will never be alone, no matter how dark and silent my world may become, and Caroline knows that she will never lose me.

Watching people tactile-sign is like watching two people embrace, an elaborate dance of hands and fingers. When people communicate through tactile sign they stand close, facing each other, their arms moving in unison and their hands acting as eyes, ears, and voices.

With Facebook and texting and everything else that has replaced face-to-face communication, even a phone call can feel like a rare intimacy these days (unless you’re in my family, where no one seems able to go for more than six hours without calling one another).

Tactile sign, though, is by its very nature intimate. It requires close touch and total concentration on another person. It is the only way to communicate one-on-one without sight or hearing,
and it is how Annie Sullivan famously blew open Helen Keller’s prison of silence and darkness, holding her hands under the spigot and then signing “water” into them over and over, until it came alive in her hands.

Tactile sign requires time and patience, two things that seem to be in short supply these days—for me included. It is not something you can do while multitasking, half-listening while you type an email or flip through a magazine. It requires giving someone else your full attention while they give you theirs, which is, when you think about it, an extraordinarily rare thing. Your mind can’t simply wander to other things—what you’re going to have for lunch, the work you need to get done, the things that are constantly running through the backs of our minds while we do something else—because your total attention is needed here, in the present, in your sensitive palms and fingertips.

It also requires a level of physical intimacy that many of us are uncomfortable with. There is no masking your feelings behind a keyboard, no looking away, no distance. It is honest and generally free of small talk, and it can feel strange and a little scary to be that physically close to someone, but it is also extraordinarily exhilarating to be able to experience people in such a different and meaningful way.

This is a way that I will always be able to keep my precious relationships, and maybe even to make new ones, with those patient enough to try. I can’t imagine a life that only contracts and doesn’t expand to include new friends. If I am blind and deaf, will I still be able to know and love new people? A part of me is skeptical, but then I think of Helen Keller, of how much she loved others and loved the world. She accomplished so much in her life and inspired so many people, and thinking of her gives me the strength to know that I can do this, that I can have a fulfilling, joyful life no matter how much I lose.

• • • •

When we watch most people with their pets or newborn babies, we can see how gently they treat them and the affection that is given so easily from one to the other. With their big eyes and total innocence, babies and dogs are so easy to love, and to touch and be touched by without fear.

One of the most important things that I have learned in my field of work is that people crave human connection and need to be touched. Those who don’t like it, and who shy away from touch, generally have been given a good reason to be wary of it. In my practice I keep pillows with textures on the couch and chair in my office, and I frequently watch people recount a memory while using a fingertip to outline the bumpy stitching on one of those pillows. Others hug one to their chest as they speak to me in session. They use them for comfort, or to express fidgeting anxiety or even happiness, and I can pick up on more about them by the way that they are touching things.

I think that the importance of touch is often overlooked in everyday life, especially once we become adults. As children, we wrestle and chase and throw our arms around those we love with wholehearted affection. Study after study has shown that people who are touched more are happier and live longer, but I don’t think most of us are touched nearly enough. I grew up in a houseful of huggers. We are all affectionate and snuggly and feel comfortable in one another’s space. For me, touch is imperative. It grounds me and connects me to people, and it is a huge part of how I communicate. I don’t want to have to live without seeing or hearing, but I can, and will, live a good life without those senses. Nobody can survive without being touched.

P
eople often tell me that I’m an inspiration, for my zest and enthusiasm for life, my lack of self-pity, my acceptance of what I’m facing. I’m never sure what to say or how I feel about that. If there is anything that makes me inspirational, it’s the things that people don’t see or know about, the perseverance to get through the general navigations of everyday life.

Like when I’ve negotiated my way through the crowded sidewalks to the busy subway, and there is construction that is pounding through my hearing aids, so I take them out and read my book while I wait,
and miss the subway that is right in front of me,
because I have neither seen nor heard it, and decide to laugh about it, rather than let it get me down.

So being told I’m an inspiration can make me feel uncomfortable, except when it comes from my brother. I don’t mind when Peter says that I’m his hero, because I can say, in all honesty, “No, you’re
my
hero!” Peter is my number one advocate, supporter, and interpreter in dark and loud situations. He is also unquestionably the most patient, caring person I know, and
hilariously funny, as well. I have always admired his extraordinary ability to meet someone with no prejudgments, and the empathy he has that allows him to put himself in someone else’s shoes, look out through their eyes. It’s so rare, and it’s so important.

Peter is the guy you always want on your team—not always because he’s the best player, but because he is its unbridled enthusiastic heart. He exudes positive energy, even when things are tough, and he has the unique ability to immediately make you feel comfortable in your own skin—to recognize and accept you for being exactly who you are. Singing and dancing with my siblings has always been a joy for me, being able to groove and goof around together, and if you’re ready to have a good time, say, wholeheartedly singing your favorite cheesy love song from the ’80s (preferably Debbie Gibson, in his case), Peter is your man and will join in and belt it out with you. If he doesn’t know the words, he’ll still sing as though he does or he’ll dance enthusiastically to support your vocals.

Over the past several years, my ability to see and hear in a dark and noisy restaurant has become increasingly compromised. I often just sit quietly and get lost in my own thoughts. The background noise is simply too loud for me to hear the person speaking, and my field of vision is too narrow for me to follow the conversation as it bounces back and forth. It’s not that I’m not enjoying myself; it just requires a lot of effort on my part and the patience and willingness of others to repeat what’s been said. For many, even though they love me, I know it takes away from the ease and fun of their evening, and the truth is, a lot of what’s been said may not be worth the effort of repeating. When Peter’s there, though, I always have a good time. He’s sensitive to my needs and normalizes them with humor and grace. When we are gathered at
a table with friends or family at a restaurant, he’ll encourage people to speak a little louder or to speak in my direction. Peter is so familiar with my sense of humor that he knows when I’ve actually heard what’s been said and when I am faking it. People will laugh hysterically over a joke and calm down—the punch line has been delivered, the moment is over—and Peter will repeat the story for me just because he knows that I would have laughed hysterically with everyone else had I heard it the first time. And I always do, which makes him laugh, too. It’s so much better to laugh with someone else.

One of the hardest things to have lost is the ability to laugh in a crowd. I can’t imagine anything worse than living without laughter; it sucks to not hear the joke when everyone else does. The people closest to me are quick and witty, and laughing is just what we
do
. I want to laugh along with them, and I want to make them laugh. Luckily, it’s as important to Peter and Alan and Caroline, and they’ll always repeat something for me to make sure I get to. Peter is the best of all at ferrying laughter to me when it doesn’t reach me the first time.

When the waiter is reciting the specials for the evening, Peter will repeat them to me quietly as I lean in to him and listen closely with my left ear. It often sounds a little something like this: “Halibut with capers, tomatoes, and olives; filet mignon prepared with potatoes, green beans, and hopefully not whatever just flew out of the waiter’s mouth . . .”

One night, he took me to see Billy Crystal performing one of his shows,
700 Sundays
. When the show had started and I tried to use the assistive-listening headphones, we realized that they weren’t working, so he tried to repeat everything that I missed that he knew I’d think was funny.

At one point, the entire audience was laughing hysterically,
except for me. Peter could tell I had missed what had been said, because it was a fart joke, and I always laugh at those. So he repeated it for me, and as the rest of the audience quieted down, I started laughing solo and hysterically, which Billy actually heard from the stage. In the blinding stage light he looked out to the audience in my direction and said, “You like that one, huh?” This of course only made me laugh harder.

People, understandably, find it hard to joke with me about my sight and hearing loss, but I often need to laugh about it, and Peter gets that. One night, at a big, loud dinner with family and friends, a joke was told, and I couldn’t hear it. My hearing aids often pick up the wrong sounds, loud background noise rather than what I’m trying to focus on. After Peter had repeated the punch line for me several times and I continued to look at him inquisitively, he finally enunciated as slowly and clearly as possible.

“
I . . . SAID . . . DID . . . YOU . . . GET . . . THE . . . JOKE . . . YOU . . . FUCKING . . . IDIOT?!
” It sent me into hysterics more than the joke ever could have, not only because he slowed down his speech to talk to me like I was an idiot but also because he sounded like such a “fucking idiot” himself speaking to me that way, parroting the way that people sometimes speak to the hearing impaired, as though they are mentally impaired as well.

This is now a running joke between us, and one that has been picked up by others close to me. If I don’t hear him after a couple of times, he’ll come out with something like, “What . . . are . . . you . . . going . . . to . . . eat . . . tonight . . . fuck-er?”

If I have to go blind and deaf, I’m glad I can have a sense of humor about it. I don’t mind being teased, and sometimes the
things I mishear can be hilarious. Caroline and I were having lunch with a friend one day, and he asked if either one of us had ever gotten toe fungus from showering at the gym, to which I responded, “Yeah! I had it on my bagel this morning.” I had heard “tofu cream cheese.” We couldn’t stop
laughing.