Not Fade Away: A Memoir of Senses Lost and Found (11 page)

I soon realized that I must be close to the top, because I could hear people cheering from not far off. I pushed with all my might and finally crested the hill, where there was a crowd gathered to look at the view cheering, urging us up. I finally got off my bike, exultant, and my legs buckled under me, loose as jelly. I drank deeply from my water bottle and looked at the beautiful vista spread before me, feeling so proud and happy to be there. Then I turned and started cheering for those coming up next, exhausted but exuberant as they, too, made it to the top. It was incredible to see all of those grinning faces and orange flags, even better than the stunning view below us.

After biking for twelve hours at a time for six and a half grueling, exhilarating days, I arrived at the finish line, where my dad, Dan, and two of my best friends, Lisa and Kim, were waiting, cheering me on. I felt triumphant and proud. A part of me couldn’t believe that I had just done this all by myself. Of course, I hadn’t really been alone, I thought, looking around me at all the flushed, happy faces of others who had just finished. It made me feel independent and strong, and ready for the next big challenge facing me: New York.

W
hen I arrived in New York City in mid-August, it felt like a full-on assault. I’d visited once the winter before to look at Columbia’s School of Social Work and had been instantly captivated by the city. I had flown in from Southern California, with its hypnotically sunny days, and loved feeling a real season again, having the snow flurry around me as I discovered Manhattan for the first time. I walked uptown, downtown, through Central Park, Rockefeller Center, the West Village. I fell in love, like millions before me, already beginning to dream up my own New York inside me, the sights and sounds and places that would forever change my life and become my home.

August was nothing like the wonderland that had greeted me on my first visit. Anyone who has been to Manhattan in the summer knows the wall of heat and fragrance that immediately hits you, the constant, hazy glare of the sun ricocheting off the buildings, cabs, and concrete. The suffocating heat trapped in the subway stations. The throngs of sweaty people crowded together on the platforms, trying their best to stay fresh and cool on their way
to work, long since having given up by the ride home, wilting like dying flowers. Scattering like birds on the weekends, leaving only those unlucky enough not to have the means or the time to escape.

The worst part for me, though, was the stench of garbage: rotting, lining the streets, piled in front of restaurants and apartment buildings, a steamy stew that violated my nostrils on every block. My nose is like the love child of a pregnant woman and a truffle pig, working desperately to make up for my weaker senses, and smells barely noticeable to most can sometimes overwhelm me. I was so nauseated when I first moved to the city that I would often gag when I walked outside, and I found myself missing the gentle heat and happy light of California. I knew, though, that this was where I wanted—where I needed—to be.

I was also hoping that it would help to ease the pain of the things I could no longer do. In New York I could get myself anywhere I needed to go, provided I remembered to carefully check the signs taped up on what seemed like every subway station pole, alerting me to schedule and line changes. I took many an unplanned trip to the Bronx and Brooklyn trying to find my way around, but at least I was doing it on my own.

So here I was, sweating and trying not to smell myself in a city I didn’t know, wanting to feel ready to take on the world. I had made it to Columbia! Fuck going deaf and blind, I was going to do this. I was planning for a double master’s in social work and public health, and on the first day made my way to the Disability Services office, striding in, looking for the advocates I knew would be there to support me. Except they weren’t.

When I asked the bored-looking woman at the front desk of the office about getting texts in a larger font, I got a nod toward the copy machine. When I mentioned finding note takers for my
classes, so that I could read the professors’ lips during lectures, I was told to make an announcement to each of my classes to see if anyone would be interested in doing it. The last thing I wanted to do was put a spotlight on me, or my disabilities, during the first week of school, before I had even made any friends. To have to be
the girl going blind and deaf
from the very first day. I was beside myself, trying to hold back tears.

I had moved to New York because I wanted to feel completely independent, to do everything on my own. Well, now I was. There was no Joni, no one to call a professor and tell them that they
must
help me. Nobody else was going to do this for me, the same way, after my accident, nobody else could get up and take the first steps for me. The advocate was going to have to be me. Right now, though, I could advocate all I wanted, but that wasn’t going to change the disinterested look on the face of the woman who was emphatically not helping me, and it wasn’t going to get me a note taker in time for my first class. Vowing that as soon as I had the time I was going to fix this broken system, I gathered up my books and marched over to the copy
machine.

R
ight as I felt like I was starting to find my way, Daniel started to lose his. The changes were subtle at first. When I left California he was happy and healthy, or seemed to be. He was at the top of his class in law school, and he never seemed to get stressed out the way other students did. He always had plenty of time for fun, too. I don’t think I had ever seen Daniel fail, or do anything less than excel, at anything he set his sights on. And though we had always been physically close, and adored each other, he had never seemed to need me. He just wasn’t emotionally needy.

So it was strange when he started to call me more, trying me again and again before I’d have a chance to get back to him. He was talking faster, too, rambling on in what became an increasingly repetitive jumble, seeming desperate to get the words out as quickly as he could. At first, as it became more incomprehensible, I thought part of it was my hearing loss, but then I started to recognize the signs.

The changes in him had been subtle at first, little things I hadn’t picked up on that became clearer as time went on. Mental
illness runs in my family; I had seen my father go through this more than once, and I was sitting through classes that illuminated its various symptoms and treatments. Daniel kept saying he wasn’t happy in law school, that he needed to do something more important, and though he graduated with the highest honors, he never took the bar.

After that, the calls became more intense, and the strange stories began. He heard music coming out of his speakers, even when the stereo was off. “I can make myself levitate,” he told me when he called one night, his voice matter-of-fact in the face of this extraordinary news. We knew he had full-blown mania at this point, but even then we had no idea how severe it would get. My parents and I encouraged him to get help, and we did research to try to figure out exactly what he was dealing with.

A few months later, I met him in Los Angeles for a mutual friend’s wedding. When he picked me up at the airport the changes in him were immediately clear to me. When I hugged him he smelled different; there was a clear change in his pH, an acridness that hadn’t been there before. I got into the car with trepidation. He was still my Danny, but something was very off, not just his smell but his eyes, even more piercing than usual, his exaggerated voice and hand gestures, his clear sense of import in everything he said.

Then he started steering with his feet, so that he could better get his grandiose point across with sweeping hand gestures. We were alone in the car, and I knew I would have felt safer had I been behind the wheel, but there was no way I was going to ask to drive. So, terrified of getting him worked up, I gently cajoled him into putting his hands back on the wheel, nodding and agreeing with whatever point he was making and trying to turn the conversation to something calm and banal.

When I came home to visit a few months later, he somehow managed to convince me to drive with him again. I think that I felt less scared knowing that someone else was in the car with him, even though I knew he drove alone all the time. This time, though, he wouldn’t stop at the stop signs, insisting that it didn’t matter, that we were safe from all harm, that he and I were above everything. Nobody would hit us, he assured me, because people were all one.

We finally stopped at a burger place for lunch. I got out of the car with shaking legs, wondering how I could have possibly agreed to this and why nobody had stopped him before now. When we walked into the restaurant Daniel sat down and immediately struck up a conversation with a stranger at the next table, asking to share her fries and talking intensely at her. It is a testament to Daniel’s extraordinary charisma that she didn’t even leave the table but let him sit there, a combination of pity and fascination in her eyes. He would sit down and ramble to homeless people; he got it, he insisted. He understood them, and they understood him, on the high plane on which he now existed. Of course, I was up there with him. He seemed to want and need me more than he ever had, and our twin-ness occupied an ever-larger space in his mind. We were extraordinary, almost gods, unstoppable together. As heartbreaking as it was, a part of me still wanted to laugh as I white-knuckled it home. The unstoppable, godlike half-deaf-and-blind girl and her manic twin brother.

I sensed right away that Danny’s illness was just as physical as mine. We now know that mental illness can be both hereditary and genetic, and a huge new study has targeted anomalous genes that show up in a wide variety of mental disorders: schizophrenia, bipolar disorder, autism, major depression, and ADHD. My father has had his troubles, though not with the severity of Dan,
but my father lives a full, productive life and is helped by medication.

I knew Daniel had seen doctors and tried the drugs they had prescribed, but he never stayed on them for long. I now know how hard it can be to get a full picture of what someone is going through, because people may only share a part of themselves or talk about only what they believe is an issue. In addition, the medications for bipolar disorder—which seemed to fit most with his symptoms, because there were periods of serious depression between the episodes of mania—dulled my brother’s brilliant mind and puffed up his face and body. I have been told over the years by many people that he is the most gorgeous guy they’ve ever seen, and I’m sure that a few friends feigned more interest in me than they had in order to get closer to him. He had already lost so much, even at that point, that it must have been hard to let go of his beauty, even at that high a cost. One of the hallmarks of his illness, too, was believing that he was
not
sick, which made him even more wary of his medication.

I didn’t want to leave him when it was time for me to fly back to New York, somehow believing that if I was there he would be safer. Seeing Daniel like this scared me more than anything in my life ever had, and I prayed that the next time that I saw my brother he would be better.

W
hen I was little I wanted to be a veterinarian, before I understood that it was more than just playing with and petting dogs. Daniel wanted to be a professional basketball player. Peter always wanted to be a news anchor, which always struck me as funny. What kid knows that he wants to be a news anchor? He is now a news correspondent for NBC. He
looks
the part perfectly, too, with his strong jaw, perfect hair, blue eyes, and well-modulated, sympathetic voice. I only wish the rest of the world could see the other side of my quick-witted, hysterically funny brother.

My second choice when I was young would have probably been to be an actress. So when I saw flyers up for
The Vagina Monologues
auditions during my first year of social work at Columbia, I figured I’d give it a shot. I decided that I wouldn’t tell them about my disabilities, because if I got the part, I wanted it to be totally on my own merit. A part of me was also worried that they wouldn’t cast me if they knew, so I just kept quiet about it.
When they called to tell me that I had gotten the part I was over the moon.

When I started at Columbia, I had gone to the health center my first week, knowing that they had an eating disorder team there. I had done an intensive outpatient program, three nights a week, and it had really helped me, and was still helping me, work through my body image issues. When I got the part, though, rehearsals were every night, and I knew that it would mean giving up the program. I weighed my decision carefully, and, though the team urged me not to, I chose the play. The program had been wonderful for me, but I didn’t want to feel as though my eating disorder was keeping me from something that I really wanted to do. I soon knew that I had made the right choice.

After I got the part I explained my disabilities, and the director, Dana, was totally unfazed. I was worried that I wouldn’t be able to do the scene changes in the dark, but she integrated it into the play, having someone lead me on and off the stage every time I was on. Then she asked me if, for the opening, I would sign along with the narrator. I was thrilled.

I played a few different parts, and my favorite was a little girl in her classroom, showing off her vagina knowledge to her teacher. I played it for laughs and loved hearing the audience roar. Even though I sucked at the dance sequences, it was fantastic. At the end of the show, I stood there with the group of extraordinary women, and though the lights blinded me too much to be able to see the audience, I could hear their wild applause, I felt so proud, so
able
. I never thought I’d be able to do something like that, and it did more for my self-esteem than I could have imagined.

T
here was no way I could ride a bike in New York City. I was already a hazard to myself (and sometimes others) just navigating the streets on foot. My ophthalmologist recommended that I run using a tether with a partner, even in Central Park, to be sure that I’d be safe. There was a group called Achilles International that hosted runs for the blind and provided fully sighted running partners and a tether. I thought it was awesome that the group existed, but I had always preferred to be the one leading the way, not following someone else’s lead. But I was desperate for something to help me burn off steam and keep my body strong. So I decided to do what every other New Yorker does: I joined a gym, paying way too much money, profoundly aware of the sculpted perfection around me.

The minute I hopped on the saddle for my first spin class, I fell in love. It didn’t hurt my foot or back and left me exhausted and drenched in sweat, feeling fully alive and able in my body. The parts of me that didn’t work well seemed to disappear as I pedaled. It didn’t matter that I couldn’t hear most of what the
instructor was saying, which was drowned out by the thumping of the bass, or that, between my limited vision in the dark and the sweat running into my eyes, I couldn’t see very well. I didn’t need to. I loved the feeling of pushing myself as hard as I could up a steep climb and then pedaling as quickly as I could in a sprint. I was on a bike that went absolutely nowhere, which meant I didn’t have to worry about running into anything or anyone. I was able to build my endurance and strength using all of the muscles that I had brought back to life in the years since my accident. I could push myself as hard as anyone else because there was nothing in my way. I had recaptured that feeling of being fully alive in my body, appreciating all of its strength.

We spend so much time thinking about those parts of us that aren’t physically perfect, and are so hard on ourselves. Even half-blind I could see that a lot of people here spent as much time watching themselves in the mirror as they did exercising. I’m not immune to it any more than any other woman. I am disappointed with myself when my ass feels too big for my jeans or when I’ve eaten an entire pint of peppermint-stick ice cream. I can see well enough to notice the perfectly toned woman spinning in front of me with her impossibly straight posture, and I have to work hard not to wonder what she does that I don’t in order to look like that. But my accident, as much as my disabilities, helped me to see the power of my own body and how precious it is. When I find something that I love, something that I can do as well as anyone else—without being singled out or noticed for what I can’t do, just being one of the group, on equal footing with everybody else—it feels so freeing.

When I realized I needed a part-time job while attending graduate school, teaching spin seemed like the perfect answer. My gym membership would be free, I could play my own music,
and I would get paid for doing something I loved. It was a way of performing, which I had always loved. I could motivate people, encourage them to challenge themselves and keep their spirits high. It was my party, and I was thrilled to see my classes packed to capacity every time. I began teaching at New York Sports Club and New York Health and Racquet, then Equinox, the Sports Club/LA, SoulCycle, and Zone Hampton. I would teach fifteen to twenty classes a week even while carrying a full workload. I became an eating, sleeping, studying, and spinning machine, and even though I was maxed out on every front, I loved it.

Over the years I have been amazed at my ability to navigate each dark spin room based on my memory of the studio space. I have gotten good at this in all areas of my life: counting stairs, memorizing familiar places, and even remembering exactly where to go in a grocery store or drugstore to get what I need, so that I don’t spend hours wandering around, aimless and lost. When I dance in a class, I know instinctively where there is an open space where I won’t trip over something. I know the spin rooms I have taught in for years like the back of my hand, and I could navigate them with my eyes closed. Luckily for me, I don’t need to yet.

Of course, spin has its challenges. Like being one of the worst possible environments for a partially sighted and hearing-impaired person. Because it’s dark and loud. Really, really loud. And when one of my hearing aid batteries died—which invariably happened, because hearing aid batteries are notoriously shitty batteries—I had to jump off my bike and, while motivating the class and scanning the room for any hands up for help, do a blind search through my backpack, sorting through to find one of the three sizes of batteries to fit whichever aid I was wearing to teach. This was by far the most exhausting part of the class.

As I taught over the years it got more and more difficult. But the exhilaration continued to outweigh the difficulties. At spin I was just Rebecca, the perky instructor who liked to dance in her classes and motivate everyone. I wanted to help people learn what I had: that our bodies are capable of so much more than we give them credit for. That it is most often our own fears that get in our way, and that we hold ourselves back without even knowing it. I knew this firsthand, because I didn’t have any choice. It was either that or never learn to walk properly again. That or stay inside, shut out from the rest of the world, because I couldn’t see much or hear much. My students didn’t need to know about my problems any more than they needed to know that I had graduated from Columbia and was a psychotherapist. They just needed me to cheer them on, push them, encourage them. I was the one helping. I was in the seat I wanted to be in.

• • • •

It’s different now. My psychotherapy practice has grown and flourished, which is wonderful, but that’s not the only reason why I teach just a few classes a week. I know I’m not as quick as I used to be. I often can’t hear what someone’s problem is if she needs help, or I can’t see if she’s waving her hand. Before I became more comfortable telling people that I was visually impaired, I used to tell them that I didn’t have my glasses on and to please come up to me if I didn’t see their hand in the air.

After class, when people come over to ask questions, which they inevitably do, it takes every bit of focus I have to try to understand what they are asking me, in their out-of-breath voices in the echoing, dimly lit studio. I hate the idea that people may think I’m rude or insensitive if I don’t notice them. I was raised
to be incredibly polite, and my entire professional life is responding to people’s feelings. But I know that I am missing things. That I could offend people, put them off, hurt their feelings.

Recently, I’ve been more open with the class about my disabilities. A handful of people whom I have become friends with over the years help me negotiate the class, and people have been happy to accommodate me by raising their voices or pointing me in the right direction toward someone who needs help. It can be exhausting to teach a class now, but I still love it, and though I don’t have the time to devote to spin that I used to, I’m not giving it up just
yet.