Not Fade Away: A Memoir of Senses Lost and Found (4 page)

I
remember those sleepless nights each summer in June when my brothers and I had our trunks all packed, and we lay in bed tossing and turning, waiting for the clock to hit six
A
.
M
. so we could jump out of bed, drive to the bus, and head off to camp for another cherished summer. As a child, the day we left for Skylake Yosemite Camp was my favorite day of the whole year.

Skylake was one of the few things in my life that wouldn’t change. Even after my parents’ divorce, we were able to spend an entire month in one place, without having to bounce back and forth between houses. My life would simplify, as it did every summer: one cabin, a few bathing suits and sweatshirts, a simple day of fun and competition, swimming, campfires, dances, and, soon enough, kisses. I was just Becky there, not disabled or a child of divorce or a girl who needed a therapist.

As the bus drew closer to camp and passed through the last small town of Wishon, I craned my neck to see what was up ahead; it was so familiar that I seemed to know every tree. And then the trees would begin to clear and I would start to see
glimpses of Bass Lake sparkling between them. I felt my body clench with excitement, while my brain started to relax to a safe, happy state, knowing I was going to the place where I felt most alive. The memories of my summers there are still ones that I use to access that place inside of myself where I feel like my truest, happiest self.

There was no better feeling than stepping off the bus and taking in that first deep breath of pine and pure, sweet mountain air, experiencing the chaos of searching for our friends, whom we looked forward to being with for the rest of the summer, and the yelling and screaming followed by adrenaline-filled hugs. Another summer at Skylake had begun.

One of my favorite things at Skylake was being awoken by the unique sounds of the birds early each morning. The first one awake, I would lie there listening for the sound of my favorite bird. Once she began to sing, her rhythm never changed. It seemed she was singing the words “But Beatrice.” I knew it made no sense, but that was exactly what I believed the bird was singing. “But Beatrice!” (count to myself, one-two-three-four-five-six-seven-eight-nine-ten). “But Beatrice!” (one-two-three-four-five-six-seven-eight-nine-ten). “But Beatrice!”. . . . It wasn’t a pretty song. In fact, it sounded almost melancholy, but she was there every morning. She never failed me and she never missed a beat, and I always wondered who Beatrice was.

The recorded reveille bugle being played over the camp loudspeaker always interrupted the birds, and I remember how clear and crisp the first scratch of the needle put to the record sounded. I heard it with such ease. Back then I had no idea that in ten years I would not be able to hear the voice of a person standing directly in front of me. I could never have known how treasured this memory would become to me, waking up to the sounds of the earth.

W
hen I was thirteen, my mother started noticing that I didn’t answer her when she called for me from downstairs. At first she thought I was going through a teenage phase and didn’t want to acknowledge her, but she soon started to worry. She said that the only time I seemed to respond was when she elevated her pitch to a high soprano singsong. So she went to the pediatrician and persuaded her to have my hearing screened. More tests.
Awesome.
Just what I wanted. She took me to the Children’s Hospital in Oakland, where the top pediatric audiologist in the East Bay reassured her that the likelihood of my having hearing loss was slim. “Thirteen-year-old girls don’t like to listen to their mothers,” she maintained. But she promised to examine me thoroughly, as thoroughly as the eye doctors had, test after test. I could tell, though the doctors tried not to frown, that this was yet another test that I wasn’t going to do well on.

What I knew: Apparently there was something wrong with my hearing, as well.

What I didn’t know: When the doctor came out to talk to my
mother, all of the color had drained from her face, and she asked if she could run the tests again. When she returned, she gave my mother the good news—she had been worried that I had a brain tumor, but I didn’t. The bad news—I had hearing loss. And though it was mild, right now, it was bilateral and symmetrical, meaning that it was affecting both ears. And, because of my eyes, she was worried that this was related and might be degenerative as well, and suggested that we see a geneticist.

The following month, my parents’ worst fears were confirmed. I was indeed losing my hearing as well. The doctors couldn’t tell them how quickly, but they knew that it was deteriorating, and that at some point I would be completely deaf. It was the first time, according to my parents, that the word “Usher” was used, even though the gene for Usher III had yet to be found.

The pain that my parents must have felt overwhelms me to this day. They had already gone through the heartbreak of learning about my eyes, and now, to learn that I was going deaf as well must have devastated them. I am convinced that it was even worse for them than it was for me, and I can only imagine what it must have felt like leaving that office. I hope that they were able to give each other even the smallest amount of comfort, to hug one another, and to promise that, even though we weren’t a family anymore, we would face this as one. That’s how I like to imagine it.

Here’s the tricky part, where my memory, so sharp in some places, fades. I didn’t know, truly did not know, until six years later, on that freezing winter’s day in Michigan, the full extent of what was happening to me. I am sure that they told me, or told me most of it, but when I heard the word “Usher” at nineteen, it was foreign to me, an entirely new land. I knew that I had a
degenerative eye disorder. I had hearing aids. How could I
not
have known?

I can think of all kinds of reasons, but what I come back to is this: I did not want to know. I was still a child, and I could not fathom it. A teenager, in my experience, can barely see a week into the future. What could years away possibly have meant to me? How could I really notice the incremental trickling away of my sight and hearing? The lengths to which we will go to not hear what we do not want to know are
astounding.

M
y father and his second wife, Polly, met and married quickly, set up by a friend over nothing more than a fierce love of golden retrievers, baseball, and the Oakland A’s. We were all still reeling from the divorce; as far as we knew my parents had been trying to “work it out” ever since the separation. I was Polly’s maid of honor, wearing a Laura Ashley dress—think flowery bedspread with an oversized doily around the neck—and the ceremony, uncomfortably enough, was in the backyard of the house where we had once all lived together, back when we were a real family. The house where my mother had sung as we gathered around the piano, where she had cooked her signature spaghetti dinners, where we had congregated around the Thanksgiving table, lost our first teeth, taken our first steps. I stood next to Polly, who was straight-backed and beaming in a slim-fitting, knee-length dress that only someone with her figure could pull off, my eyes sweeping over the backyard where my father had stood countless times over the barbecue, grilling salmon or burgers and hot dogs. The same place where he had lifted Peter and Daniel
and me in his arms, swinging each of us around until we were light-headed and screaming with dizziness and delight. I was heartbroken and bewildered, as children so often are, by how much was completely beyond my control and how all this could have happened. I looked down at my flowery dress while they said their vows, occasionally glancing at Daniel and Peter to see if they looked any happier than I felt. They didn’t.

Soon after, we all spent our first weekend together as part of my father’s new family. It was also the first time I saw snow. My dad and Polly were taking us to Tahoe, though none of us had ever been skiing before. I already hated the idea. The warmest piece of clothing I owned was a thick hooded sweatshirt with the logo of the University of Michigan, my father’s alma mater, across the chest, but Polly cheerfully outfitted us in ski clothes and puffy parkas and packed us all into the car. I sat squished between Daniel and Peter in the backseat, closing my eyes and wishing that when I opened them it would be my mother in the passenger seat, that she would start belting out show tunes and we’d all playfully join in, my brothers and father singing the low parts while I tried to hit the high notes with my mother. But when I opened them it was not my mother’s slender shoulder that my father’s hand rested on but Polly’s; she was in the driver’s seat, the seat my mother never took when my parents were in the car together. She caught my eyes in the rearview mirror and half turned with a grin, telling us how excited she was to be with us and to introduce us to the snow. I closed my eyes again.

“You’re going to love skiing!” she exclaimed.

Somehow, though, I had a feeling that a sport requiring grace, coordination, and quick instincts—and being out in the freezing cold—was not something I was going to excel at.

I didn’t see much on the drive up and was unusually sullen
and quiet. But when we got to the cabin and stepped out of the car and into the snow for the first time, I couldn’t help but be awed by the huge white peaks against the impossibly blue sky, the snow making the sun seem brighter than I’d ever seen it. Daniel had never been in the snow before either, but with the instincts of a mischievous kid he instantly started gathering up handfuls of it and throwing snowballs at Peter and me. Our first snowball fight ensued, in our typical style, which meant that no one was giving up, no matter how pelted they got, and in no time we were rolling in the snow, shoving it in each other’s faces and down the back of one another’s sweatshirts.

When we were done, breathless and laughing, I looked up and saw my dad and Polly, still unloading the car, stopping to smile broadly at the three of us. I felt a pang of guilt for having this much fun without my mom being there and closed my eyes again, feeling the warmth of the sun hitting my face, not wanting to look at any of this and think about how much and how quickly my life had changed.

The next morning I pulled out my bulky ski wear and began to layer on what felt like an absurd amount of clothing. Polly had lent me some of her things, but since she weighed about a hundred pounds soaking wet, and I was already bigger than that, the clothes felt both too puffy and too tight. By the time I clomped into the dining room to meet everyone for breakfast I felt like the Stay Puft Marshmallow Man and was ready to go back to bed.

Polly had been an avid skier for years and was so genuinely excited to be doing this with us that some of her enthusiasm started to rub off during breakfast. Maybe, I thought, as we walked outside and were greeted by a bright blue, cloudless sky, it wouldn’t be so bad. Polly patiently had us fitted for boots and skis, checking each one of us, making sure we were comfortable
and that our straps and snaps were properly done. By the time we were actually ready to ski it felt like hours had gone by, and then of course I had to pee, like I always do, which required an immense amount of work between the parka and the ski bib and trying to walk around in those ridiculous boots.

Finally we got to the gondola, and, as I freaked out about putting my skis in the ski rack and getting into the gondola in time, Daniel hopped right in next to Polly. Polly was a serious runner and an excellent athlete, and she and Daniel loved to compete and race one another; it was often too close to call a winner. There was no question, from the first time that Daniel stepped into his skis, that he was going to be awesome on the slopes. And it was clear that Polly was looking forward to having him pick up skiing quickly so that he could join her on the more challenging black-diamond runs. She showed us the first simple moves, and Daniel executed them expertly.

As in everything, Peter was a studious and diligent skier. He took his time but steadily made his way down the mountain, rarely losing the perfectly paralleled form of his skis. On the more difficult slopes he was careful, never falling and learning the rhythms of skiing, letting Polly and Danny race each other to the bottom of the mountain but quickly becoming competent.

Meanwhile, Dad and I were clearly far less coordinated than the rest of them, and generally wary of the entire sport. So, while Polly taught Daniel and Peter, Dad and I signed up for a beginner ski class. We awkwardly stumbled our way over to the bunny slope, made even clumsier by our bulky clothes, skis and poles jutting out from our sides in all different directions. I felt especially idiotic because I was wearing an old blue one-piece snowsuit of Polly’s, complete with a rainbow across the back, so different from the stylish women skiing by me in their fitted
North Face jackets and Burton ski pants. Our ski instructor’s name was something like Dale or Chad, an interchangeable ski-dude name, I would learn, and when he lifted his sunglasses off his face he displayed a raccoon tan the likes of which I never would have believed was possible.

Dale or Chad instructed us “dudes and dudettes” to get in line next to the pulley circuit, where we would wait for each one to come around for us, then grab on to it and let it pull us to the top of the hill. As each pulley came around, I thought to myself that they looked like rubber chickens, and I tucked my head into my chest and laughed to myself just long enough to miss mine and barely grab on to the next one. Mortified, I held on with all I had, but I didn’t know how to prevent my skis and my legs from separating further and further apart from one another and before I knew it, I was in a deep split with my face planted in the snow and my butt in the air. Dale or Chad yelled for the operator to stop the circuit of rubber chickens so he could make his way up the hill to help me back up. As he effortlessly ran up the hill in his ski boots, his sun-kissed hair flowing behind him, yelling something that I couldn’t hear, my dad clumsily attempted to traverse his way over to me from where he stood at the top of the hill to help. Unfortunately, he, too, lost his balance and fell over, so the whole group waited and watched as this father-daughter spectacle slowly maneuvered its way back onto its four useless feet.

This was pretty much how the morning went, and when we all finally met up at the lodge for lunch, I felt like I had been to war, and lost. The lodge was warm and smelled like French fries, and I decided that I was done with skiing and the snow for the rest of the day and would stay right where I was. Dad agreed, and after lunch, when Polly, Daniel, and Peter enthusiastically jumped
back up, Dad and I drank hot chocolate and people-watched for the rest of the long afternoon.

Apparently, Polly and my brothers were having so much fun that they stayed until the last possible minute, and by the time they got back to the lodge to get us the gondola had stopped running, and the only way to get down the mountain to the village was by skiing down a blue-square slope called Village Run. The sun was starting to fall below the trees and the wind was picking up, and as we all walked outside I looked up at the sky nervously. It was already hard for me to see at dusk, and I was clearly a useless skier, so Polly decided that the only way for me to get down before the sun set completely was by having me ski in tandem with her, with me in front and between her legs.

I’m sure it’s not easy for any kid whose parents have recently divorced to love her new stepparent. And I could not have been more embarrassed or looked more ridiculous, having this slender, competent woman spooning me from behind, our skis both in the classic “pizza wedge” beginner’s move as we slowly made our way down the mountain, with even the six-year-olds effortlessly whizzing by us. But as it got colder and darker and much harder to see, Polly began to feel more solid to me. She was a real person, a permanent part of my life now, and I realized that I felt safe with her.