For me, there are so many experiences that are limited or already gone, and so many more will be—some very soon—that it is impossible not to feel lucky now, while I still have them. I think that I am probably more grateful for that one star than I would be if I were fully sighted, looking at a whole sky shining with them.
6
My brothers and I all remember our family, and our childhood, as an idyllic one. We were always close, physically affectionate, rolling on top of one another like puppies, fighting to see who could be the wittiest, be the funniest, get the most attention. My mother would come home after a full day of work and cook us a homemade meal, sing to us, and play the piano, and coordinated our busy schedules to and from soccer and basketball practice and piano lessons. My father was loud, funny, and gregarious. He was tall and muscular, and when we were younger the three of us used to beg him to pick us all up at once and try to carry us around. There was nothing that frightened me more than when he raised his voice in anger at us, a rare event, but one that I dreaded. Our parents looked beautiful together, and I loved to look at pictures of the five of us hung around the house, my father next to my mother, dwarfing her, with his huge hand resting on her tiny shoulder, Peter, Danny, and I in front, grinning. I would run my fingers along the glass, stopping to rest the tip of one on each tiny face, and know with an absolute certainty that we were a perfect family.
The night my parents told us they were getting separated we had sat down to an early dinner, so used to my parents’ strained conversation at this point that we barely noticed their silence as we chattered on about our day, talking over one another. They told us that after dinner we needed to go up to their room so that we could have a family meeting. We never had family meetings, and I remember nervously looking back and forth between my parents, who sat at either end of the kitchen table, not looking at us or at one another, trying to imagine what they possibly needed to speak to us about that couldn’t be discussed right there at the dinner table. After we had cleared the table and helped clean the kitchen, Peter and Daniel raced and roughhoused their way up the stairs while I lagged behind, for once not feeling the need to keep up.
I had always loved my parents’ bedroom. The lingering scent of my mom’s perfume, my dad’s shoe polish, and the crisp smell of his dry-cleaned work shirts greeted me each time I entered their room. Danny, Peter, and I would often lie on their bed in our PJs, making funny faces into the reflective brass globes that sat atop the bed frame, our grossly distorted features reflecting back at us from the round shapes of the balls, keeping us in hysterics until we were writhing in pain from our laughter. We loved to wake them up when we were little, racing in after Saturday morning cartoons to beg for my mom’s French toast, or her matz-n-egg scramble, a family specialty, accompanied by my dad’s fresh-squeezed orange juice. We would climb all over them, my mother’s smell of sleep that I cherished and my father’s faint smell of Irish Spring mingling into the warm comfort of exactly where we belonged.
That night, as we scrambled for our places on the bed, everyone wanting the middle, of course, my dad and mom slowly followed us in, closing the door behind them. My mom did most of the talking, and the only sentence I remember clearly is “Your dad and I have decided to separate.” I’d only seen my mom cry a few times before—after a few of my parents’ fiercer arguments—and I would feel so incredibly guilty, watching her cry and not knowing what to do to help her. This time, though, my dad was crying, too—inconsolably. I had never seen him cry, and I felt so helpless and terrified. My big, strong daddy falling apart was not something I could comprehend; it didn’t fit in with the world I knew and the father I loved. It felt so utterly wrong that I began to feel nausea rising along with my sobs. And I knew he wasn’t just crying for himself, but for the unbearable pain they were causing us.
What I didn’t know then was that he was also crying out of guilt. Guilt that his own illness, his depression and mania—which my brothers and I knew nothing of at the time—had helped push this into motion. Behavior that I would someday recognize in my brother, another illness carried down, probably through generations as well. Right then, though, all that I saw was that the two people whom I loved most in the world were preparing to tear our world apart.
As my brothers and I pleaded and begged for them to reconsider or try to work it out, my father told us, between his sobs, that it was what he wanted, too, to try to keep our family together, to stay together and work on it. My mother was clearer. She told us that she could no longer tolerate her children running down the stairs to try to stop a fight between them. The last straw for her had been watching Daniel race into the dining room, shove himself between them, and plead, “Daddy! Daddy! Please don’t hurt Mommy!” She couldn’t bear the idea of us, her babies, feeling as though we had to protect her from my dad, and she did not want us to believe that our dad, who stood at least a foot taller than she did, could ever possibly hurt her.
Danny, Peter, and I asked desperate, heartbroken questions, believing, the way children do, that we could somehow change the outcome of the adult world. Despite watching my parents fight more and more, I really thought we had the perfect family. My mother and father explained that they were going to first try a “separation,” though even then I could see by the look on my mother’s face that this was my father’s idea. We would stay in our house, and they would alternate staying with us. That sounded horrible to me, but still, I clung to it like a life raft. Surely, I thought, they would come to their senses.
This was the last time that we were all together in my parents’ room.
• • • •
For a long time we existed in this strange limbo where my parents would take turns staying with us. My dad would stay in the in-law unit at a family friend’s house when he was gone, and my mom rented a tiny basement room at the back of a neighborhood house, where I would sometimes want to stay, finding it too unbearable to be away from her for very long, and wanting to protect her and keep her company. I would lie huddled under a purple sleeping bag on the futon that I shared with her, in that lonely room, with nothing but a tiny bathroom and a mini fridge, and wonder how on earth it had come to this. How could she rather be here than with my dad, in our house? What could be so terrible that she would choose this over having our family together? I didn’t blame her, though, because I, too, was sometimes afraid of my dad’s temper, though he was also the kindest, most generous man I knew. I just wanted things back the way that they had been.
Peter felt badly for my dad. He was the eldest and so strong in his conviction that we were the perfect family that he still says it to this day. Always the peacemaker, he just wanted my mom to give our dad another chance. At the time, Danny seemed to be the most unscathed of the three of us, walking the line as he continued to get excellent grades in school and kick ass in every sport he played.
At the time, and even now, the memories feel inextricably linked: my vision problems, my parents’ separation, and the new life Danny, Peter, and I would begin as we learned the divorce shuffle, living out of duffel bags as we ping-ponged our way between our old house, now empty of the laughter and music that had filled it, and my mother’s new one, which felt cold and foreign. My brothers and I, always close, drew even tighter around one another. We were never alone, and we didn’t talk about the divorce or about our feelings much, we just stuck together. We still argued: I took too long to get ready; Peter was bossy, always trying to parent us; and Danny was the loudest, always talking and singing, cracking us up even when he was irritating. But we were a team. Everything else might have been changing, but not the three of us.
If I had been given a choice then to have perfect eyes or my family back together, I would have picked the latter in a heartbeat. It was a much more devastating blow, even as I could feel my vision getting worse, and even though we were starting to notice, in what seemed to be an entirely unrelated problem, that I was having trouble hearing as well.
7
When my parents got separated and I was diagnosed with RP, they thought it would be best for me to start seeing a therapist. Not Dan or Peter, just me. Looking back I guess it made sense, but it confused me all the same. And it reinforced what I already believed to be true: I was the messed-up one. I was the one who was sneaky, who had a disability, who didn’t do as well in school. I was the one who needed help, and I hadn’t yet connected the help I needed to my disability.
Jamie’s office was in a modern building above Market Hall in Rockridge, and I would sit in a big, comfy chair, trying to focus on anything but my parents’ divorce—that’s what I thought I was supposed to be talking about—and my thoughts would drift to the delicious food smells wafting up from the market. All I wanted to do was go downstairs to get a piece of the delicious focaccia I could smell. Why couldn’t I be down there eating, or with my friends, or even home with my brothers, rather than sitting here alone in a room with a grown-up doing my best to talk about anything but my feelings?
So we made a deal. She would take me down and buy me focaccia, and then we would go back up to her office and I would talk to her. There was something about eating, and focusing on the food, rather than the emotions, that made it easier for me to talk. Sometimes we’d play board games, or I’d color, and she’d let me go through the toys she kept in her closet for younger children. I used my baby-talk voice, one that I used sometimes to avoid being serious, or because I wanted someone to like me and thought it might endear me to them.
Jamie was sweet and generous and listened to me attentively, her kind eyes never leaving my face. But I knew that I wasn’t going to hold up my side of the bargain. I wasn’t going to talk about my parents’ divorce, or my eyes, or anything else that really mattered.
I wasn’t going to say that I hated it when my mother asked us to make sure that Dad gave her that month’s child support check, or that my dad would hand it to us impatiently and say, “Here, give this to your mother,” as if that was all she was now, our mother, nothing to do with him. Or that I was angry with him for remarrying so quickly and didn’t want to try to like my new stepmother.
I wasn’t going to ask why it was just me sitting here, why they thought only I was fucked-up enough to need therapy.
I wasn’t going to say that I despised the way that I sometimes caught my parents looking at me now, with worry or fear or sadness or some combination of the three that I couldn’t quite discern.
No, I wasn’t going to say any of that. I was just going to sit there, and eat my soft, fragrant bread, and find ways to ignore the giant elephants in every corner of the room.
8
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.
9
When 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 th
at 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.
10
My 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.
Not Fade Away: A Memoir of Senses Lost and Found Page 3