Not Fade Away: A Memoir of Senses Lost and Found (13 page)

P
eople often tell me that I don’t look like a “disabled person.” Sometimes when I bring my dog, Olive, wearing her service vest, down into the subway station, I get a look and a raised eyebrow from the station agent, and I’ve been stopped plenty of times. It usually goes something like this:

“Is this a seeing eye dog?” (casting a doubtful eye on the little, curly-haired dog wagging her tail next to me).

“She’s a service dog.”

“Are you blind?” (asked skeptically).

“I’m visually impaired.”

“Really?” (even more skeptically).

“Yes, I’m also hearing impaired” (lifting my hair to show my hearing aids).

“Hmmm. Okay. You don’t look disabled.”

At this point I’m never sure what to say. Um, thanks? What’s the appropriate response here? I usually settle for a smile and go on my way, hoping that Olive doesn’t do anything to make us look like frauds.

After being told hundreds of times that I don’t look disabled or blind, I’d really like to ask people: What does it look like? For a long time I was able to hide my disabilities, whether it was intentional or not. Now that I can no longer conceal them, I’m starting to think it will be easier. Part of me doesn’t want that to be the first thing people know about me, to have my disabilities be the starting point, but it’s so exhausting to try to hide or correct for them. It seems that in New York, especially, we size each other up awfully fast. Clothes, shoes, bag, job, neighborhood, boom! But we have no idea what each of us is carrying inside.

C
aroline’s first impression of me was not a good one. In fact, she couldn’t stand me. She worked at the desk at Zone Hampton NYC, one of the spin studios where I taught, and is not a morning person, to say the least. I would bounce in to teach my six fifteen
A
.
M
. spin class, chirp a singsong “Gooooood morrrrning!” and try to strike up a conversation with her. She would give me a look that said she clearly thought I was insane, a look that she gives me to this day—though now it makes me laugh. Then she would mumble a grudging hello and go back to studying, hunching over her book, her blond hair a curtain around her face, her slender collarbone jutting out from above her shirt the only part of her exposed.

It was clear that she had no interest in me, but for reasons I still can’t quite explain I was drawn to her. Even then I could see glimpses of her dry sense of humor when she greeted other people. When I focused in on her face I could see a sharpness in her pale blue eyes that seemed to catch everything, and, even more than that, a recognition of something in them that lived inside of me,
too, a part that I never showed other people, that I worked so hard to try to defeat. A lack of comfort with herself, a turning in, as if she didn’t want the world to see her and didn’t like what she herself saw.

I have always made friends easily, but with Caroline I had to work at it. I was relentless, stopping at the desk to chat between my classes, asking her about herself, leaning over to see what she was reading. Finally one morning she held up her Spanish textbook with a sigh. This was great, I told her. I had always wanted to learn Spanish! If she would teach it to me, I would teach her sign language. To my delight and surprise, she agreed.

Maybe she just gave in, accepting that this crazy person wasn’t going to leave her alone until she did, or maybe part of her was glad that I was trying so hard to be her friend, since she needed one more than she ever let on at the time. Whatever it was, I thank the universe for bringing us together, because Caroline is the best friend I have ever had. She is my Annie Sullivan, but she tells me that I saved her and that I helped bring her back into the world.

I didn’t tell her about my disabilities right away, and maybe she thought all of my “What?”s and “What was that?”s
were part of a general flightiness.
I wanted to, but sometimes it’s difficult to try to figure out where and when to fit it into a conversation. I didn’t want everyone I worked with to know all about it, though a few weeks later, there was an article about me in
New York
magazine,
and I knew that cat was going to be out of the bag. So I preempted it, tossing a copy as casually as I could on her desk the day it came out and dodging immediately into my class.

The next time that I saw her she was a little awkward, doing the look-away shuffle and the “If there’s anything I can do”
mumble, two classic responses. I was finally relaxed about it, though. Being honest just feels
better;
it’s not nearly as exhausting as keeping things in, which is just so much work, and my honesty would eventually help her open up to me about things that she generally didn’t talk about. Best of all, we realized that we had the same absurd sense of humor.

I was hanging out by her desk one afternoon in between classes, still unsure whether or not she kind of thought of me as a nuisance, and she made some obvious observation about something, to which I retorted, “Does a snake drag its balls?”

Caroline looked up sharply. “What?”

“Does a one-legged duck swim in circles?” I continued.

She started to laugh and couldn’t stop, a sound I had never heard from her before. She told me later that she felt something that she hadn’t in a long, long time.
This is what having a friend feels like.

At first, Caroline hadn’t told me much about herself. Like that she was an accomplished violinist who had been playing since she was a young child. Or that she had spoken to almost no one her entire freshman year of college, feeling so out of place and different from her peers that she retreated into herself and her studies and moved back to New York after a year to be closer to her parents, and continued school in the city. Or that she had been anorexic, paralyzed by the need for control and order that so many of us face. Worst of all, she had no one to laugh with, which, since we laugh together every single day, is simply unimaginable to me.

It was like we filled a void in one another, and once we started spending time together I could no longer imagine my life without her. She started learning sign, and we could soon communicate
in a language that is often much easier for me. I encouraged her to become a spin instructor and told her that she didn’t belong behind the desk, and she started her training.

• • • •

One morning, several months after Caroline and I had gotten close, I bounced into the gym with my usual cheerful enthusiasm and found her looking even more unhappy than her usual morning self. In fact, she looked downright depressed. When I asked her what was wrong, she glumly replied that she wasn’t going to be able to go home for Easter that year, between work and exams. Holidays were a very,
very
big deal in Caroline Kaczor’s household, and as an only child, she was devastated at the prospect of spending Easter away from her parents. What about her personalized egg hunt on the hill overlooking Three Mile Harbor on Long Island? What about the beautiful basket full of goodies she always received? she asked wistfully, missing the fun of childhood and her parents, irritated with all of the adult responsibilities weighing on her. Caroline’s not a complainer, so I could tell that it was really important to her, even if the whole thing sounded pretty silly to me.

So I bought her an Easter basket and filled it with every candy that I knew she loved, and brought it to the studio that Easter Sunday. I knew that she would be sitting behind the desk, frowning down at her schoolwork, so when the elevator doors opened I held the basket up over my face and walked to the desk. Her look was priceless. You would have thought that she had just won the lottery by the way she jumped up and down and grabbed the basket from me. As I watched her rifle happily through it, delighting at the jellybeans, the Reese’s peanut butter eggs, and the
chocolate bunnies, I felt so happy to have been able to do something for her that meant so much.

One day a few months later I was teaching back-to-back classes and then had meetings for the rest of the day, and I found myself downtown in the pouring rain, with just a little time before my next meeting, ravenous. I had forgotten my wallet, and I called Caroline, trying to laugh at my predicament but unable to at that point. I can’t function without food. My days are often jam-packed, and when I am low on fuel, I am even more of an accident waiting to happen than usual. I could deal with the rain, the hectic schedule, my eyes and ears and everything else, but the idea of doing it all on an empty stomach had completely defeated me. Caroline thought for a moment, and then she directed me to the nearest Starbucks, went on their website and bought a gift card, and immediately emailed it to me. Five minutes later I was sitting inside, warm and dry, drinking coffee and eating oatmeal.

Sometimes, friendship requires very little. A coffee, a chat, a small favor. An Easter basket or an emergency gift card to Starbucks. Our deepest friendships require more. They are not bound by blood or marriage, but forged freely. They need to be nourished, but the lines are blurry; there is no contract, nothing to say what it means to be a good friend. We decide for ourselves what it means. We may lose touch and reconnect; we may find that a friendship no longer works or that we’ve “outgrown” one.

My friendships are life sustaining. Without Caroline and Alan and Lisa and my other closest friends, my world would be so much darker and quieter, so much less humorous and joyful, and so much harder. For me, even a small thing can be huge. Caroline has found one of my dropped pearl earrings more times than I can count. If I break a glass in my apartment, there’s no way that I am going to be able to find all the little shards, so I clean up as
much as I can see, then retreat to my bedroom with Olive, so we don’t cut ourselves, and call Caroline, who will come over as quickly as she can to help.

Sometimes I hate having to do this, to always be the one who’s going to need more help than anyone else. When I’m especially frustrated with myself for feeling so needy, I think of Helen.

When people hear “blind and deaf,” I know that their frame of reference is probably Helen Keller. Brave, pioneering Helen, who learned the world through her hands and the love and patience of one extraordinary woman, Annie Sullivan, her miracle worker. Through Annie, Helen learned a world that she had no understanding of. I am losing the senses that she never remembered having.

Helen was so grateful for what she had. “My life has been happy because I have had wonderful friends and plenty of interesting work to do,” she once remarked, adding, “I seldom think about my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times, but it is vague, like a breeze among flowers. The wind passes, and the flowers are content.”

Helen’s life is a beacon of inspiration and a story that people continue to be drawn to. She rose above what at that time were insurmountable odds to become a writer, a political activist, and an inspiring speaker and lecturer. It was her Annie, though, who made that life possible, who spent her life freely with Helen so that she could come to know the world and share her extraordinary self with it. They were together for forty-nine years. Half a century! I, too, have to have faith that my friends wouldn’t be here if they didn’t want to be, and that they love me as much as I love them.

I
stared at the screen, chewing on my fingernails, then stopped, remembering how Caroline always batted my hands away in disgust when I did. Then I started chewing again.

I had filled out the countless questions about myself over the years: what my perfect date would be, my body type, eye color, favorite books, political leanings, sexual preferences, thoughts on religion. So many questions that when my eyes couldn’t focus anymore Caroline had sat there answering them for me, generally stating the answer rather than asking me for it; she knows me well enough to do a better job than I would.

Those dating sites get pretty personal, sort of. You may have an awful lot of info about someone, from his past drug use to how many times a week he likes to have sex, but everybody is putting his or her best foot forward: Their most tanned and toned pictures show up, generally taken a few years (or more) ago, and flaws listed are generally along the lines of “I expect too much of myself.”

But, of course, there’s even more left off of the page: I take Zoloft. I ejaculate prematurely. Probably because of my parents’
fucked-up marriage, I’ve never had a girlfriend for more than three months. I’m an inveterate cheater. I lied about my drug history. Or how about this one? I’m going blind and deaf.

Dating is complicated for most of us. Navigating the delicate dance of romance, with all of its unwritten laws and complexities: When do you text, phone, show up with nothing but lingerie under your coat? And the process of really getting to know someone: How soon do you put all your cards on the table?

For me, this process can be exponentially more difficult. For one, I’m not usually able, even with my hearing aids, to catch everything someone says, and on a date it’s often too dark to read lips. So I can say nothing and look like an idiot, and, even worse, not laugh at his jokes. Or I can tell him, reveal all immediately:
Hey, it’s great to meet you, you’re super cute—and oh, by the way, there’s probably something you should know.
And if not right away, how long do I wait? These days, a Google search is de rigueur when you meet someone, and guess what’s going to show up if you search under my name? Articles about my living with Usher syndrome, and me on the
Today
show, talking to Meredith Vieira. I’m told it’s an inspiring piece, but it’s tough to lead with.

It’s happened more than once. One night I was introduced to a funny, adorable guy at a party; we had a great time and went on a fantastic date a few days later. Somehow we got on the subject of languages, and I told him that I knew sign language and that I was hearing impaired. He seemed cool with it, and we agreed to go out again.

The next morning I got a very long, honest email from him. Apparently he had Googled me when he went home the night before, and he told me that, despite our chemistry and common interests, my disabilities were too much for him to handle. He had a lot of stress in his life, and it was too much for him to consider taking on.

About forty emotions ran through me at once, indignation and frustration taking the early lead. I hadn’t asked him to “take on” anything, I was still just basking in the happiness of a great first date. Then I felt sad and lonely: This was one of my biggest fears—being rejected because of my disabilities, and where they would eventually lead. It wasn’t the first time, and it certainly wouldn’t be the last. Finally, I just felt a wistful acceptance: He was honest with me, and really, that’s all I could ask of him. I didn’t blame him for feeling that way, and who knows, maybe I would have, too, if I’d been in his shoes. And who am I to judge? God knows I’ve rejected plenty of guys for far less. As Alan had recently said when he’d IM’d me, chiding me for being too critical and dismissing profiles for the smallest irritations, “I bet you never thought you’d fall in love with a balding, chubby guy with cancer.” He wasn’t wrong. There was no guy I had ever loved more than Alan.

We never know what life is going to throw at us, and I can’t deny that I wanted this man who so easily dismissed me to think I was worth taking that risk for. Would I have been if we’d gone on a few more dates before he found out? What about if we had been friends first, if he’d watched how I handled my disabilities, seen how rich and full and happy my life was despite them?

Seated there on my couch, Olive curled up next to me, trying to nudge away my computer so that she could take full control of my lap, I was about to take one of those chances. I was going to update my profile to add that I wore hearing aids. I didn’t know how many guys would dismiss me as a potential love interest because of it or who would read that far down into my profile to notice, but I thought I owed them, and myself, at least some honesty up front. I heard my mother’s voice in my head: “Be up-front, who wouldn’t want you? Why would you want them if they wouldn’t want you for who you are? You’re my beautiful, brilliant
Rebecca.” The usual Jewish-mom stuff. But she had a point. She actually thought that I should include a link to the
Today
show piece from my profile, really put it all out there. Caroline thought so, too, as did Alan. I thought about Alan on our first date and the exasperated look on his face when I hadn’t laughed at his jokes, and I knew that they were probably right. Look what had happened when I’d just been up-front with him. But I knew that Alan was different from most other people. And, as I reflected on that, I realized that this really wasn’t a good time to start thinking about him. Right now the hearing aids seemed like enough of a step.

I knew that even putting it up there might invite in another kind of guy: the kind who needed to be needed or who liked to be controlling. I had already met plenty of those. It irritated me a little that other people could hide their issues in a way that I couldn’t, and I knew that if I could still hide mine I probably would, at least until someone got to know me a little bit, but people could tell almost right away that something was off. At first it might seem as though I was just buzzed or distracted, but pretty quickly it became clear that I wasn’t the same in person as when we’d texted or emailed. Then I could be quick and witty, and not have to ask a guy to repeat himself constantly or bump into things as we made our way to a table. Or miss the encouraging or naughty things he whispered in my ear, if it came to that. It’s an awkward time to ask someone to speak up.

A part of me thought it would be so great if we could all just be completely honest with one another, right off the bat, if we could all just put our shit right out there. But who could? As I added this little factoid about myself and clicked to update my profile, I felt proud of myself. A small coming out, maybe, but it felt big.