Not Fade Away: A Memoir of Senses Lost and Found (3 page)

W
hen I was a little girl I loved going to visit my mother’s mother, Grandma Etta, in Santa Fe, New Mexico. I adore Grandma Etta, who is independent and free-spirited to this day, at ninety-two, still taking her morning swims in Lake Michigan and wearing beautiful Indian saris for festive occasions. When she would read to us she could do any accent and bring every character to life. My favorite was when Grandma would read me
Eloise
. She would capture her exuberant, naughty, childish voice perfectly, and I would sit, mesmerized, wishing she would go on forever.

I knew that we were getting close to Grandma’s house when I began to bounce gently in my seat to the sound of the tiny rocks under our tires, which meant we were at the beginning of her driveway. An insignificant sound, but one that I loved and can still remember so clearly.

We would often go at Christmastime, and even though we were Jewish, on Christmas Eve Mom would put up little stockings for us, letting us enjoy a few of the perks that our friends did.
Then we would walk down the pebbled roads, where tea lights in white paper bags would be lined up on either side to celebrate the holiday, and down into the town, where the Native American women laid their jewelry out on blankets. They were in an array of vibrant colors: the gorgeous range of turquoise greens and blues, bracelets and barrettes intricately beaded in red and green and yellow. We watched the ceremonial dance performances and chants, the men in their beautiful headdresses moving to the beat of their powerful drums. I loved how different the colors were from those of Oakland and Berkeley, with their heavily paved roads and towering trees of eucalyptus, oak, and redwood. Here, the backdrop for the bright colors and stones was the subtler colors of the Southwest, earth tones of adobe, purple, and brown.

In the evening I would sit on the porch swing, with Grandma’s dog, Tilly, a loyal German shepherd mix rescue dog, at my feet. I would absently stroke her with my toes as I watched the sun set in a brilliant wash of orange, red, and purple, and as the evening breeze picked up, the bells on Grandma’s porch would start chiming. The bells and the sunset and Tilly’s warm body beneath my feet filled me with so much joy.

The last time I remember seeing a sky full of stars was on one of those visits, when I was nine or ten years old. Once the sun had set, and the dark had brought in the chill, we would bundle up in our sweatshirts and sit outside of her little adobe house and look up at the universe filled with tiny pinpricks of light, the whole sky ours to see.

Today I live in Manhattan, where no one is able to see the stars anyway—but whenever I’m lucky enough to be in a place where they’re visible, I’m sometimes able to see the very brightest ones. One, or sometimes two if I’m really lucky, though whomever I’m with assures me, when I ask, that the sky is full of them,
twinkling diamonds in an inky-black sky. And this comforts, rather than distresses, me. To be able to see just one makes me so happy. I can still see a star, millions of miles away! The sky is still full of them, I have enough vision to see one, and my imagination can fill in the rest. Someday, I’ll have to rely on my memory to conjure them, but I will have taken the time to look, and to be grateful.

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.

M
y 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.

W
hen 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.