Not Fade Away: A Memoir of Senses Lost and Found (12 page)

W
hen I first saw Alan’s profile on JDate, in the winter of my last year of graduate school, I remember thinking to myself,
I’m going to marry this guy
. His online profile was full of wit and his sense of humor was unmistakable. He was eight years older than I was, unbelievably funny and clever, and, though not my typical muscle-bound jock, he had an adorable smile and a grown-up menschiness that I found myself instantly attracted to. Though all that I had been through had in some ways given me a maturity that others my age didn’t have, there were other ways in which I had given myself license to act less grown-up. While I had dated a lot of guys in college, there had been no one serious, and I realize now that I always had one foot out the door. If I didn’t, I reasoned, they probably would. A part of me would wonder how long someone was going to want to stay with me when it sank in that, while I might be very self-sufficient now, someday I was going to need help, and lots of it. How could someone try to imagine a future with a woman who would someday be deaf and blind?

In my better moments I knew that this wasn’t true, that I needed to give guys more credit than that, and I also had to admit to myself my other reasons for not wanting to get too close. How long did I have to be young and pretty? How long would I be able to hide my disabilities and just show a shiny exterior? How long would I be able to banter and charm and not say “what” fifty times in a conversation? Already, I said it too much, and it took much more work than it used to for me to seem normal. So I surprised myself on my first date with Alan.

It began inauspiciously enough. He met me in front of my apartment building, and as we walked to the restaurant, the street noise of the city made it impossible for me to hear most of what he was saying. Whatever he had to say, apparently, was quite funny, and at one point he turned to me and said, “You’re killing me here, I’m using my best material and you’re not laughing.”

Then he actually said, “What are you, deaf?” I didn’t say anything back, just smiled and laughed, but then as we got to the restaurant and turned to go inside, I walked straight into the glass door. At this point he probably thought I was either on drugs or a complete lunatic, but he kept at it. The final straw was when he held a fork in front of me to take a bite of his food, and I didn’t even see it.

Alan is Jewish and, like many of us, comes from a family where food is so much more than sustenance. It is love, intimacy, and sharing. He was sharing his food, and he thought I was ignoring it, refusing his bite. This was unacceptable. So I told him my entire story on our first date. It was the first time I’d ever done that.

My disabilities didn’t faze him a bit. He told me that he had been afraid of disabilities when he was younger, that he had grown up in a family that turned their faces away from people
who were blind or in wheelchairs, not understanding, or feeling bad or embarrassed or whatever it is that makes so many uncomfortable when they are faced with people with disabilities. I think that some people just don’t know how to react. With pity, or maybe a sympathetic smile? Should they try to ignore it? Does it make people see their own mortality? There are so many reasons that it can be scary to see us. I try not to let it offend me or hurt my feelings. It’s their issue to resolve, not mine.

But he embraced it wholeheartedly, going home that very night and Googling all he could about Usher syndrome, becoming an avid student, quickly knowing even more than I did. It has remained that way ever since. We started dating in February and became serious quickly. Even though there was a part of me that held back, that had
always
held back and never let any guy in fully, by May we were saying “I love you.” And I meant it. I loved
him.

T
hat same May, I graduated from Columbia, with a master’s in social work and another in public health. I was spending the summer working in the Disability Services office at Columbia, which had improved vastly over the three years that I’d been at school. I had pushed them relentlessly to do a better job at meeting students’ needs, and the people who ran the office now were extremely competent. Among other things, professors had been taught to do a much better job accommodating students’ needs, and all classes mandatory for graduation were now available in wheelchair-accessible buildings. I felt a sense of pride for having been able to help make the school a better, easier place for other students with disabilities. Alan and I were happy, spending our weekends in the Hamptons, and everything in my life seemed to be pointing in the right direction.

Then, at the end of June, Alan saw a lump in his neck one morning as he was shaving. One of his glands had become swollen and hard, and after a week of antibiotics, it was still there, a golf-ball-size lump that wouldn’t go away. He went to an ear,
nose, and throat specialist, who told him that he should have a needle biopsy, and when the biopsy came back suspicious for Hodgkin’s lymphoma, he was scheduled for a full surgical biopsy.

His parents flew up from Florida to be there with him, and the night before the surgery we all had dinner together. It was the first time I had ever met them, and I was incredibly nervous and trying as hard as I could to keep up with the conversation. My eyes darted back and forth, and my ears strained, wanting them to like me, to think I was smart and funny and to see how much I loved their son. Of course, they were probably too distracted and worried to even notice.

After Alan’s biopsy, I was supposed to leave on my annual vacation with my mother’s family, and Alan encouraged me to go and not to worry. A week later he called me in Hawaii. It was Burkitt’s lymphoma, non-Hodgkin’s. Rare, and extremely aggressive. When he had gotten his diagnosis he had gone alone, without telling anyone, and had a bone marrow biopsy, an EKG, and a PET scan to determine that his cancer was still stage one. I wished so much that I had been there with him. I knew what it felt like to be alone with a shocking diagnosis.

Alan being Alan, by which I mean a massive control freak as well as a huge science and medicine buff, he took control immediately. Not only did he interview several doctors, but he did a ton of research on his own as well. He found the best specialists, studied the different treatments, and crunched the numbers. He decided to receive treatment that would require nine months of aggressive chemotherapy at the Weill Cornell Medical Center.

The first couple of times he had chemo were going to be inpatient, so I went ahead of him and decorated his room. I remembered how much I had hated being in the hospital and wanted to
make it less horrible for him if I could. I decided on a restaurant theme and put a sign on his door that said
CHEZ PINTO
. I made
MADAME
and
MONSIEUR
bathroom signs, and drew pictures of candles and a roast chicken to put on the walls. I brought place settings and Turkish food, wanting to bring his favorites, not knowing how the chemo would affect his appetite, and slept in a chair next to his bed that night. As soon as the first round was over I could immediately smell the difference in him. He had a chemical odor, medicinal and metallic, and I could smell it on his breath and seeping out of his skin.

We went home to his one-bedroom apartment, where his parents were staying, too. They were going to be flying up for every treatment, so he had bought a bed to put in his living room, and for much of the next year it would often be the four of us staying in one small New York City apartment, sharing one bathroom. His mom, whom he calls Suze, was the ideal Jewish mother. She would cook huge Sephardic meals, completely taking over the kitchen to make all of his favorite foods. I shouldn’t say “taking over,” actually, because I couldn’t cook at all. I still can’t. I wanted to be able to do these things for him, too, to be able to cook and clean and take care of him, and also to show her that I wasn’t completely incapable in the kitchen, so one afternoon I decided that I would bake cookies. Just simple chocolate chip, and the cut-and-bake kind at that. It was something nobody could screw up—except me. I bustled around the kitchen self-importantly, trying to look competent. Somehow, though, they ended up completely burned on the bottom and raw on top. Plus, I burned my arm and managed to set the fire alarm off, filling the entire apartment with acrid smoke. Needless to say, she wasn’t very impressed.

People were sometimes surprised that I stayed with him, since we had been together for such a short time, but it never occurred to me not to. We never know everything that’s coming, and life can change in an instant. I have had plenty of experience with being dismissed as a potential girlfriend or partner because of my disabilities, and that wasn’t something I was ever going to do to somebody else.

When my summer job ended, instead of looking for another one right away, I thought I was supposed to stay with him. It was my first adult relationship, and I didn’t know quite how to act. I wanted to be brave and good and there for whatever he needed, and I thought maybe I should do that at the expense of everything else. I sat through his chemo sessions with him, and we watched every episode of
Lost
. He was amazing. Though I knew he was constantly nauseous, exhausted, and in pain, he tried never to let it show, and he never lost his sense of humor.

After a little while, though, it became clear that it wasn’t working for me to be around all the time. Alan is a natural helper and giver, and suddenly we had two caretakers in the relationship, neither of whom were good at letting someone else help them. Our first big fight happened that fall, when he told me in no uncertain terms that I needed to get a job and stop sitting around his apartment. He didn’t like being taken care of, and knew how hard I’d worked to get my degrees, and didn’t want me held back in any way by his illness.

• • • •

I soon began working at St. Francis de Sales School for the Deaf, in Brooklyn, as the school social worker. The children there were
all ages, from toddlers to eighth graders, and many were immigrants and came from poor backgrounds. I would meet with the families of the children, helping them navigate Medicaid or find employment and deal with family issues. Many of the parents didn’t know how to sign, other than the very rudimentary basics, so I would often find myself interpreting between them and their children. These parents would come to me not understanding why their ten-year-old had started throwing huge fits in the house. My heart broke for these kids, and I tried to educate the parents while swallowing my feelings of fury: Imagine not being able to communicate your feelings to your own family, and not having parents able to understand the thoughts and curiosity of their child’s growing mind.

There were sign classes for adults before and after school, and I urged the parents to take them so that they could communicate with their kids. I watched how much more well-adjusted the children who had deaf parents or parents who signed were, and the ease with which they managed the world, and I realized that it really
didn’t
have to be a disability. If they were part of a strong deaf community, they could all live full, happy, and productive lives.

That was when I started to make more deaf friends and to spend more time in the deaf community. Though I had a very small field of vision, what I had was clear and strong with the help of contacts or glasses, which could correct for my nearsightedness, and when I gave someone my full attention, I could be fully engaged in a conversation. It also felt easier to tell them about my eyes. Many of them were familiar with Usher syndrome, and it felt like a great burden was lifted when I could just fully be myself, unjudged, and communicate in a language in which I felt entirely comfortable.

• • • •

After Alan’s nine months of chemo, his cancer was gone, and he could fully return to his life. Our relationship, however, which had felt like it was on hold in many ways during that past year, despite how much time we’d spent together, was already showing signs of strain.

A
fter four years on and off together, trying again and again to make it work, Alan and I finally broke up, but we have never stopped being friends. In fact, he’s still one of the people closest to me in the world, and I think that if most people in my life had their way, I would end up with him. It’s hard to breach the inner circle of my closest friends and family, but Alan busted through with charm and ease. He now
is
family. It would be perfect, in a fantasy world.

While I can honestly say that we are much better, and happier, as friends than we were as a couple, sometimes I worry that he has set the bar too high for other men. He knows everything there is to know about me and loves me absolutely. Who could ever know me the way he does—not just my disabilities, but all of my flaws and issues, too—and still love me so completely? How often do you find someone who can really love you for exactly who you are? He still wants to fix me; he’ll
always
want to fix me—not because he thinks I’m broken, but because he sees
how difficult going deaf and blind can be and he wants me to enjoy everything that fully sighted and hearing people do.

I also can’t imagine someone who would be a better father than Alan. He is awesome with kids, loving and warm and just what a child would want in a dad, what any woman would want for the father of her children.

He gets me, too. That was one of the most wonderful things about our relationship. We had so much fun, and we were constantly laughing. We still make each other laugh. He likes my offbeat sense of humor, and he makes sure to repeat anything I miss that he knows I would think was funny. He took me to
The Book of Mormon
recently and spent half of it retelling me the jokes.

He brings me wildly expensive boxes of imported saffron because he read that it improves retinal function, and bombards me with supplements and information and optimism. He meets with every doctor doing retinal research, often accompanied by my dad, and follows every trial. He attends conferences about blindness and follows every lead and bit of science, with Google Alerts set up to notify him of the tiniest bit of news that could affect me. I’m so glad he does this, because it means I don’t have to, and truthfully, I wouldn’t anyway. While of course I would love for there to be a cure—and I helped to organize an annual Usher III Initiative benefit, Spin-for-Sight, that raised $110,000 in its inaugural event—I have no real interest in following the science until it becomes close to a possibility for me. I trust that he and the rest of the people who are close to me will tell me when anything important comes along. He is paternal, a fixer, and an eternal optimist.

For all of this, there are many reasons that we didn’t, ultimately, work as a couple. Many of them were my fault. I was young,
and self-centered in so many ways. Some out of necessity, and some because I just wasn’t ready, didn’t know how to be a girlfriend, didn’t know how to take love seriously. Alan always wanted to fix me, to help me fix myself, to save me. He urged me toward clinical trials that I wasn’t ready for. When you’ve got a disability like mine, a lot of the men you attract are going to be control freaks and father figures. Alan, though he is one of my favorite people on this earth, has got his fair share of both.

A lot of it, too, was just timing, which really can be everything, and you can’t change it any more than you can change the weather. Alan and I had the wrong timing for romance, but we have the best timing for friendship. He is the most supportive friend I could imagine, and goes so above and beyond what friendship probably means to many people that I almost don’t even have a word to describe him. He is family, really. He is a rock, and I can’t imagine my life without him.

I wonder sometimes if he fills too many of the needs that I have, and if it would be easier to accept another man fully into my life if I didn’t have him. I don’t know. I know that he wants me to find someone, he’s made that very clear over the years, though, for him, too, ours was the longest and most serious relationship he’d ever had.

I know this, though: Whether or not it makes it harder for me to be in a serious relationship, I am not giving Alan up. No chance. I can admit now what I couldn’t then: I need
him.