Each night we rode into our campsite, where we bathed in port-a-showers and pitched our own tents to sleep in. There was usually some form of entertainment or a talent show, but the only thing I could think of after dinner was going directly back to my tent to pass out. My tent-mate was another rider named Tiffany who was a few years older than me, who’d originally gotten involved because at twenty-six she was already acting as a foster parent to children living with HIV who needed to be placed in permanent homes. Tiffany and I started out the ride together, but it was soon clear that I was just a speck of dust in her tailwind. Lucky for me, our tent was usually pitched by the time I made my way into the campgrounds in the evenings because she had arrived long before I had. I would have loved to ask her more about her life, but we were both sound asleep the minute we crawled into our sleeping bags.
On the ride, everyone who was HIV positive had a fluorescent orange flag on his or her bike, to let the medics know, so that they could keep a special eye on them. It was so inspiring when someone would pass me with one, and I thought maybe I understood a little of how they felt, triumphant to be able to do what they could with their bodies, willing to push themselves hard, because there is something about knowing that you have limitations that makes you want to push through them.
Sometimes we were riding next to traffic, along the Pacific Coast Highway, sandwiched in between certain death on every side. My vision was better then, and I could see the traffic flying by on one side and the steep drop on the other. So I focused on nothing but the straight ahead and came up with a mantra, something that I’d never even considered before. Breathe in peace (breathing in through my nose), breathe out fear (breathing out through my mouth). Breathe in peace, breathe out fear. It just came out, suddenly there when I needed it. I would go thirty, sixty miles chanting that to myself, almost meditating as I rode. It sticks with me to this day, and in times of stress I’ve gone back to it. Breathe in peace, breathe out fear. It works for me.
At one point there was a hill that was so steep most people had to get off their bikes and walk, but I was determined that I was not going to have to get off my bike. I slowly made my way up, doing my best to breathe in peace, breathe out fear, every muscle in my legs burning. After a while, though, the mantra stopped working, and I started swearing, cursing everything in sight and wondering why I had thought this ride was a good idea, digging my way through each brutal pedal stroke at a turtle’s pace. Just when I thought I really wasn’t going to be able to do it and I was ready to hop off and walk, I noticed a man wearing very plain-looking clothes—not typical riding gear, which I had stocked up on in the hope that looking the part might help my riding skills—slowly making his way alongside of me. We were both breathing too heavily to acknowledge one another, but, as he drew up next to me, I saw his tall, skinny plastic pole with the little orange flag waving lazily with the breeze. And just below the bottom of the pole was a small sticker that said HIV POSITIVE. I saw no disgust or frustration on his face, only signs of exhaustion and determination to make it to the top. So I mustered up what would have to pass for a grin, but probably looked more like a maniacal grimace, and pedaled on.
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.
26
When 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.
27
Right 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.
28
When 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.
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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.
29
There 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.
Not Fade Away: A Memoir of Senses Lost and Found Page 11
