Not Fade Away: A Memoir of Senses Lost and Found (16 page)

T
here are so many beautiful places in the world that I’ve been lucky enough to see, and so many more that I long to. I know I won’t have enough time to see nearly as much of the world as I want to, so I hold these memories close, the way I try to do with all of my experiences that are gone or won’t last.

After I graduated from college I went to Europe for a month. Armed with a Eurail pass, a
Let’s Go Europe,
and a far-too-overstuffed backpack—items that anyone who has taken this journey is intimately familiar with—I flew to Italy to meet my friend Andy. Our plan was to meet up in Florence, and travel to Greece and Sicily and wherever the wind blew us.

Like countless others before me, I fell instantly in love with the city, the narrow, cobblestone streets—hazardous though they were for me—and the little shops tucked into them. I loved the sexy, robust sound of people speaking Italian, and the rumble of Vespas whipping by, which would have me jumping back onto the curb just as a handsome man would ride by, almost always accompanied by a stylish woman on the back. Everything was
bathed in an incandescent pink light, making the people even more beautiful, and at the market I bought half a dozen silk scarves in a riot of jewel tones. The colors, tastes, and smells all felt more vibrant. And the food! I would have bathed in the olive oil if they’d let me. I ate gelato, sometimes twice a day. I couldn’t believe how impossibly fresh everything tasted. I had always been a picky eater, but apparently food in Italy had become the exception. Even the strong scent of the Italian men’s cologne, which normally would have repulsed me, smelled right here.

From there we took a boat to Greece and flew to the tiny, beautiful islands of Santorini, Mykonos, Ios, and Paros. The islands were stunning—the azure water against the white stone with the stores and restaurants literally carved into the rock—and I knew these images would stay etched in my memory forever.

I met up with another friend a week later, and we flew to France. I loved the timeless character of the old buildings in Paris, the sophistication of the people, and the ease with which you could walk through the city. We traipsed from the tiny, vibrant Marais to the splendor of the Tuileries Garden, walked along the Seine, and roamed the halls of the Louvre. And we ate, savoring the incredible food, the incomparable cheeses and breads and pastries.

From there we traveled to Germany and visited Dachau, light-years away from the joy of Italy, the beauty of Paris, and the pure white sunshine of Greece. The day we went was appropriately gray and rainy, and freezing. As we walked into a large and bitterly cold building that was the gas chamber, I was filled with the horror and sadness of all of the people—mothers and fathers and sisters and brothers—who had been forced to die in there. It felt poisoned, as did the earth around us that held the mass graves of so many dead.

It was as awful and heartbreaking as I expected it to be. I’m so glad, though, that I got to see it, to experience a place that I needed my eyes for. I will never let myself forget what I saw there.

• • • •

My mom and I went to Peru for her sixtieth birthday, when I was twenty-eight. It was a walking and hiking tour, and I wanted to do the most intense hikes. My mom got terrible blisters and stayed toward the back for much of it, whereas I, of course, wanted to lead the pack and push myself to my absolute limit. More than wanted to; I felt like I needed to
.
There is nothing I love more than hiking, because it makes me feel so able, so focused, so capable of taking care of myself. There are ways in which we are all weak and in which we are all strong. This is one of my strengths, and even though my foot and back ached, as they always do, it was an ache that I could handle, could push through, and it didn’t stop me from loving the feeling of being in my own flawed, strong body.

For the bravest (or craziest) among us, there was the Inca Trail, which winds its way around the back of Machu Picchu to the Gate of the Sun. Parts of it are so steep that you need to crawl to climb it, and there are ancient, narrow steps leading to the summit. I was determined to climb it, and I knew that I could. When I am completely focused on my body, I can forget my eyes and ears and just concentrate on the parts of my body that work as well as everyone else’s. Also, my central vision was still very strong, and as narrow as it was I could totally focus on what was directly in front of me. In fact, it probably helped me, because my lack of peripheral vision made it easy to block out the deadly fall that you could take on either side. I was so exhilarated, and my mom was at the top, cheering for me. When we reached the peak
I could barely speak, sweat pouring down my face. I felt like I had conquered the world.

My eyes swept over the scene in front of me, scanning from side to side to take in all of the beauty. The mist hung over the wide swaths of green and the massive ruins. I kept thinking,
I am seeing this. I will never forget this.
I was just so amazed; I wanted to be able to take in everything, to fill my eyes with all the beauty and wonder of the world. For everyone, it was a breathtaking sight, and the cameras came out, capturing that unbelievable vista. For me, though, I was less intent on getting a great photo and more focused on using all of my senses to take it all in. In addition to the beauty all around me, there was my pounding heart, the breeze drying my sweat, the smell of the high mountain air. So I did what I always try to do: close my eyes and capture the feeling, the moment, the memory, to bring back when it’s not here anymore. This was an extraordinary, once-in-a-lifetime trip, but I try to remember to do the same thing with simpler, everyday moments: imprint them on my memory and let myself feel the full joy of being there in that moment.

After we left Machu Picchu we made our way through little Incan villages, past tiny huts with a fire burning in the center of them, watching the villagers in their colorful clothes and the children watching us shyly or chasing after one another. It was so peaceful and quiet, and the people made do with so little. I wanted to be able to make do with this little, and at that moment I liked to believe that I could.

When Mom and I got to the little cabins where we were sleeping that night, I started crying, and Mom hugged me. Peter and I both cry when we’re overwhelmed with happiness, and I stood in our cabin, tears pouring down my face as Mom held me, feeling so happy and strong and so fortunate to have all that I did.

Polly, Lauren, and I are planning a trip to climb Mount Kilimanjaro next year, a trip Polly promised me we would take someday when I was twelve. This would make me nervous, except that I’ll be with two of the toughest women in my life. Lauren, now twenty, is an incredible athlete who was once on the Olympic development team for soccer, and the fiercest advocate I could ask for. Once after taking my spin class she overheard a woman complain that she had tried to get my attention in the middle of class and I had ignored her, and Lauren was over there in a flash, explaining my condition and letting her know, in no uncertain terms, that if she needed my help all she had to do was ask. She knows that there is nothing that I hate more than being misunderstood and that I want everyone in my classes to feel comfortable and accommodated. I have no doubt that if I am hiking between Lauren and Polly, I can make it to the top of
Kilimanjaro.

E
very year on February 4, which is Daniel’s and my birthday, I always make sure that I think of a wish just in the moment when people are singing “Happy Birthday,” so that I have it ready as I blow the candles out. When we were younger, I remember wishing that I would get a Cabbage Patch Kid, and after Mom and Dad separated, I’d wish that they would get back together. In high school I wished that Cody and I would get married and be together forever. For the last twelve years I have had the same wish: Right before I blow out the candles, I always say to myself, “I wish that Danny will get better,” or “I wish that Danny will be able to live the life he wants.” It doesn’t seem to be working so far, and I’ve tried to think of another wish, but you only get one and I don’t want to waste it; this is the one thing that I want most in the world, and just in case wishing for it helps, I make sure that I do.

Daniel tried different medications and therapies for years, but none of them worked the way he needed them to: no matter what it was or how much he took. He tried everything, from the most benign to the most severe and drastic therapies available,
but to no avail. As with me, it seemed there was no cure, nothing that could help him. My heart broke over and over for him.

He practiced yoga incessantly, meditated, had acupuncture treatments. He wanted to get better. Dan was the smartest person I knew, and I couldn’t imagine how it must feel, in his more lucid moments, to know that his mind was not in his control. He seesawed from wildly enthusiastic and ebullient to devastatingly depressed. Then he decided that he was going to take a trip to Peru to go on a spirit walk in the Amazon to participate in a tribal ceremony led by a Shaman, where he would drink ayahuasca, a strong hallucinogen brewed from Amazonian plant leaves that has been used for centuries by the natives for healing purposes. Danny was determined to do this, and when we realized that we couldn’t talk him out of it, my father decided to go with him.

As hard as it was for me to accept this alternative “therapy,” I understood Danny’s compulsion to find something that would help him. In my case, people are constantly telling me about new therapies, treatments, and natural remedies that might help me, but I’m generally skeptical. When something truly viable comes along, I’ll hear about it. When Daniel made the decision to go to Peru, my gut said,
This cannot possibly be good for someone in as fragile a state as Danny,
but at that point all I could do was support him.

At first, the emails that came in were positive, and I began to think that maybe he would be okay. I imagined that he was discovering a new culture and people, and I hoped that perhaps getting away from his own small world for a while would help him. Then came my father’s email after the first ayahuasca ceremony. It had gone well, and my dad said that he had felt like he was with the “old Dan.”

During the last ceremony, though, Daniel had collapsed into
four hours of sobbing and thrashing . Despite this, Danny still believed that the ayahuasca was helping him let go of his demons, and that if he could stay longer and take more he would start to heal. It was agonizing to think of Daniel going through so much pain and anguish in the hopes of healing himself. My dad continued the email by telling us that Daniel was now terrified to be left alone for even a minute, and reminded us that we should not be expecting to see the “old Dan.”

This is an expression that my family used for a long time. “The old Dan.” We all used it, but I finally realized that we had to stop saying it, because it let us believe that he might get back to the person he once was. He’s not going back to his former self any more than I am, though there is a big difference: While my hearing and vision are vastly diminished, they are not the essential parts of who I am. For Daniel to have his beautiful brain not in his control is a much more horrifying thought.

After I got my father’s email, I immediately booked a ticket to San Francisco, finding a flight that landed only an hour after they would arrive from Peru, knowing that I needed to be there. As soon as I saw him and hugged him, I could tell that he was far from okay. He had a terrified look in his eyes, and he couldn’t stop moving, his body vibrating in my arms. For the week that I was there, I tried not to leave his side, and I slept next to him in the guesthouse, the very place I had lived while I recovered from my accident years earlier. He held on to me like I was a life raft, only able to sleep for an hour or less at a time. I kept my hearing aids in so that I could hear him when he cried out. My incredible, intense brother. My precious Danny. My twin, whom I would do anything to protect, who would do anything to protect me, though we are both helpless in the face of each other’s conditions.

Someone sent me a video recently of twins being born in a water birth. When they are first born, they are held, suspended in the water, and have not yet opened their eyes and become aware of their surroundings, so they are still behaving as they did in the womb. They curl around one another, bodies intertwining, snuggling, pushing, one entity that has never known being without the other. Daniel and I have this connection, and I can’t help thinking that I’m the one who should be able to help him most. We clung to each other for nine months. He was my first love, our bodies holding each other in whatever dreamlike state we dwelled in before birth, and there is something about that connection that is impenetrable. When Danny and I are home at the same time we often still share a bed. It is so natural for us, and I’ve always thought it was because we had that time together, before there was anyone else. It makes me feel so secure and peaceful, knowing that we are safe lying next to each other.

• • • •

More than anything else, living with a disability is exhausting. It can be hugely lonely to be different. My disease is particularly isolating, and so is my brother’s. The irony of all of this is that he keeps my parents from worrying too much about me. Is Daniel any more able to change than I am? People seem to draw stark distinctions between physical and mental disabilities, when they are so murky.

Daniel and I are equally desperate to help each other and we are both filled with survivor’s guilt. I know that most of the time he doesn’t understand that he is far more debilitated than I am, and I wouldn’t trade places with him for a second. He is desperate to help me and calls to apologize, to tell me his next plan to make
money so that he can get me a car and a driver, take care of me, make sure that I have everything that I need.

There are ways in which Daniel’s and my circumstances are quite similar, except that I am applauded for living my life to the best of my ability, while his situation is thought of as tragically sad and has put immense emotional and financial strain on my family, which he is aware enough of to feel badly about. I was lucky to have some information at a relatively young age about what my future would hold, so that I could begin to prepare myself for what lay ahead. My parents exposed me to blindness and a supportive community, I was taught how to advocate for myself at school and in life to get the things I needed, and I learned the skills I needed to help myself as much as I could as my hearing and vision got worse. I was responsible for making the doctor appointments, going to the audiologist, and getting all of the training that I needed. I decided to learn sign language and integrate myself into the deaf community.

Daniel was never taught these same skills. When we were growing up, Daniel was exceptional at everything, effortlessly, and was never a show-off or arrogant about anything. He didn’t need to be. So I can’t imagine how devastating it must have been for him when, years later, he was suddenly confronted with losing all of that to a disease that he had no understanding of. Great things were expected of him and he knew that nobody was surprised by his successes, whereas my every accomplishment was thought off as beating the odds.

Daniel needed serious help. In contrast to the welcoming disability services programs that had embraced me with open arms, Dan had a very different experience. After trying dozens of different medications from numerous doctors, all of which had terrible side effects, or didn’t do the job they were meant to,
Danny became distrustful of anything that was offered to him. Unlike what I had experienced with my own disabilities, when Daniel became ill there was no welcoming disability services program there to embrace him with open arms. Mental illness distorts your view of the world, but it also alters how the world sees you. When we see a person with a physical disability we often offer to help, feel pity, or maybe feel inspired to appreciate what we have and what we’re able to do. When most of us see a person who is clearly mentally ill, though, our immediate reaction is to avoid him, increasing those feelings of isolation even more.

I think that Daniel’s road is much harder than mine, because his brilliant mind struggles every day to recapture the clarity and sharpness that always came so naturally to him. He feels betrayed by his own brain, and lives with constant fear and anxiety about the future. Although I am losing my sight and hearing, I can still have a joyful, meaningful life. I can face what’s coming to me, and my network of support helps and grounds me. Danny is rootless and completely disabled in so many ways.

It’s impossible not to be keenly aware of the irony between my situation and Daniel’s, and sometimes I get frustrated when he can’t even appreciate how fortunate he is to be inside his beautifully able body, with its perfect eyes and ears. Even I can fall into this trap, of somehow treating mental illness as though it were any less real, any less physical, than mine. It’s not.

He now lives mostly in his car, in San Diego. It is the fourth car that he has had, since he rarely leaves it, and has spent much of the last several years driving endlessly from San Diego to Los Angeles and back again. He calls me daily, full of grandiose ideas, talking in circles that lead to nowhere. It doesn’t matter how bad my hearing is anymore, how fast he talks, or whether he mumbles, because he always tells me the same things and talks about
the same plans he never follows through with. He talks endlessly about his desire to make a fortune so that he can always take care of me. And then, in his lowest moments, he tells me that the only reason he hasn’t taken his own life is because he knows how much his family loves him. I am so scared that at some point, as my Usher progresses, I won’t be able to be there enough for him. Daniel dodged my genetic bullet, but I dodged a bigger one. I’m not the one that my parents’ hearts break over. I’m the lucky one. When Danny calls I may feel exasperated, sad, and guilty, but I always feel the deep, intense connection to the first person I ever
loved.