Not Fade Away: A Memoir of Senses Lost and Found (17 page)

I
’d been told for many years that this day would come, and though a part of me had never really believed it, here it was: the dreaded cane. The thing that announces to the world, “Look at me! I’m blind!” People don’t notice the spectrum of seeing disabilities. You have a cane, ergo, you must be blind. I’m sure that I would have thought the same thing, if I hadn’t been all too aware of the degrees of blindness.

Several years before, when I had gone out to practice alone for the first time, a part of me had been very curious, but mostly I had just been filled with dread. After a deep breath I had stepped out onto the sidewalk, scanning quickly for others on the block. It was already dark out, and, for the moment, I had been alone on the street. Slowly, I unfolded the cane and it snapped right into shape. Click, click, click, click. As quickly as a tape measure retreats to its dispenser. Its tip was a reflective, fluorescent red, and if there was any reason for a stranger to question my walking slowly back and forth from my apartment building to the end of the street, this would clear things right up.

It wasn’t so bad at first. I held it down low so that I wouldn’t see it. I hadn’t practiced since I had received training years before, and I tried to remember what I had learned. Two-point touch. Tap left, tap right, tap left, tap right . . . constant contact, side to side, shorelining, overlap, protective technique, upper forearm, lower forearm, all of the things that I had been taught. Things that I probably should have listened more closely to. I had integrated myself into the deaf community, loving sign and the ease with which I could use it, but I hadn’t worked as hard when it came to my vision. Not even close.

When I finally decided that I really needed to start learning to use the cane, I had a mobility trainer named Nicole, a loud, proud, outspoken lesbian who was quick to provide commentary on, or criticism of, anyone in our way. We would go out on the street to practice, and, as if I didn’t already feel like I was drawing enough attention to myself, I had a woman with no care for social graces or patience loudly ordering directions at me. Despite this, or maybe even because of it, I adored her. It takes a little while to understand blind culture; it has its own qualities, just like the deaf community. There is an enormous amount of animation in the voice, the way, in the deaf culture, facial features and gestures look overexaggerated. To sighted people, the voices of the blind can seem socially awkward sometimes, but when you can’t see, all of the information you are conveying comes from your voice. I think visually impaired people can also seem extra touchy to others, but it’s because touch is vital for someone who can’t see. Your fingertips are your eyes; laying your hand on someone’s arm is a way of smiling at them, even if you can’t look into their eyes or they can’t see yours.

Nicole was patient with me. I knew I probably wasn’t easy to teach, because I was so focused on the cane that it became harder
to concentrate on my hearing, and I had to work not to let my mind wander. She understood that my difficulties were twofold, though, and she gave me her all, and I’m sure she cut me what she would consider some slack.

When Nicole left she told me that I should be practicing with the cane every day, and when she called a couple of weeks later to find out how it was going, I was indeed using the cane. It had turned out to be an ideal tool for grabbing Olive’s toys without having to leave the couch. She asked if I’d been practicing regularly, and, as I picked up Sophie the squeaky giraffe for the thirtieth time that morning, I assured her that it was getting lots of use.

That first night when I had gone out to try my cane in the dark, I had gathered everything I remembered and turned my full attention to the task at hand. I approached the crosswalk at the end of the block, and a car halted at the stop sign and waited. I stayed at the corner, willing him to drive by so that I could go slowly, drawing as little attention to myself as possible. He stayed there, waiting for me to cross. Finally I did, and as I entered the crosswalk I suddenly felt an overwhelming need to cry. I could see the driver scrutinizing me, and though I had wanted this to feel freeing, knowing that I would learn to be independent by doing it, I hated being watched. By the time I was across the street tears were streaming down my face, and then I
really
couldn’t see. As soon as the car was gone I immediately crossed back over and retreated back into my apartment, sobbing. I hated it, and I hated knowing that at some point in the not too distant future I would be doing this for the rest of my life.

Now, years later, the day had come when I needed it for real. The night, actually, that was when I really needed it. I reminded myself that I could still do things myself during the day, and, as
hard as they were getting, I told myself that I was lucky. I was thirty years old, and the doctors had thought I would be completely blind by now. It didn’t help. This was worse than the hearing aids I was supposed to start wearing in high school, which I would take out unless I absolutely needed them, or cover under my long hair, still able then to keep my disabilities hidden away. This cane was the opposite of hidden away. It was like a giant banner hanging over me.

I stood on the curb and wished for Caroline, or Peter, or my mom,
someone
to take my arm, to be with me as I did this. I reminded myself that this is for when they’re not here, so that I can do things for myself, go places by myself, keep my precious independence. That wasn’t helping, either. So again, I took a deep breath and stepped out onto the sidewalk, clicking the cane into place, remembering all of the challenges I had faced between that first trial run and now. I had hoped that it would be easier this time, that what I had learned, experienced, gained, and lost in those years would help me to be able to face this with more acceptance. It didn’t. This time, though, I had no choice but to walk forward, in the present, into my future. I straightened my back, tried to swallow my tears, and took a step, and then another, making my way down the sidewalk.

A
few years ago, I went home with Caroline for Christmas at her parents’ house in East Hampton. I couldn’t wait. I adore Caroline’s parents, and they’ve become such a huge part of my life and so close to my family. Peter actually calls Caroline’s mom on Mother’s Day.

Christmas is a huge deal for them, and I had heard endlessly from Caroline about the wonder that was the holiday season at the Kaczors’. Every year their tree goes up the day after Thanksgiving, and after that it is open season on the Christmas insanity. Caroline had told me all about the Christmas extravaganza, so I thought I knew what to expect, but I couldn’t have imagined the winter wonderland (her words) that awaited us. She was psyched to share the Christmas magic (again, her words) with me. A couple of days before Christmas she picked me up at the Helen Keller National Center, after I had had a day of grueling back-to-back appointments with an audiologist, an optometrist, a mobility trainer, and a computer technology accessibility instructor, all of whom, for whatever reason, had been in shitty moods. The
holidays seem to delight some people and leave others glowering. Caroline is definitely in the former category, and as soon as I got into the car her joy and excitement quickly cheered me up as she put on the special Christmas CD she had burned just for the trip, singing along in a mocking, playful way. I started to sing, too, but five minutes into the drive my hearing aids were out and I was sound asleep, out of sheer exhaustion from a day of testing and learning the ropes for functioning as a deaf/blind person. By the time I woke up we were only a few blocks away from Caroline’s house, and she was almost jumping out of her seat with excitement.

As we drove up to the house, I suddenly understood what all the fuss was about. Oh sweet baby Jesus, it was something to behold. A set of three snowmen awaited us on the front steps, and when we got close they began singing and dancing. Their sensors, apparently, were so sensitive that anything from a car driving by to a raccoon racing across the yard could set them off. I was the only one in the house who wouldn’t be woken up at one point or another by the sound of singing snowmen in the middle of the night.

Caroline’s father, Larry, was in charge of the outdoor decorations. White lights, tinsel, and red bows were wrapped around the deck, and a fourth sensored snowman, two-feet tall and stuffed, stood by the door greeting everyone who came in. “Come on in, it’s warm inside!” Tommy the snowman would cheer. He also did this when people left, or stood on the porch, or got anywhere near him. It was one of those times that I was aware of the advantages of having ears that I could turn off.

Her mom, Susanne, handled the indoor affairs: the splendid tree, Christmas music, snow globes, and stockings. The decorated hearth and cozy fires, the scented peppermint soap and Christmas towels in the bathroom. There were gingerbread men and
Santa’s entire family hanging on every possible nail, hook, and banister. I couldn’t help but love it. And there was banana bread, my favorite, baked especially for me. Caroline gave me her bedroom and took the guest room, because hers was closer to the bathroom, and I wouldn’t have to pass by a steep set of stairs to get there.

They made me feel so welcome in their little winter wonderland, which had always been built just for three, that I wanted to help as much as I could and make them happy that they had invited me. The three of them have always been a tight unit. Caroline is an only child who’s extraordinarily close to both of her parents, and, even though I probably shouldn’t have, even though Caroline was my best friend, I still felt like I needed to earn my place there. Lucky Rebecca, to have wonderful Caroline to help her, to find her lost things, sign to her in loud rooms, help her find her way in the dark, bring her home to share and celebrate her favorite holiday, and even give up her bedroom for her.

So after every meal I would jump up to clear the table and help clean the kitchen. On Christmas day I broke a bowl and felt terrible about it, though everyone had assured me it wasn’t a big deal at all. So I was exceedingly careful after Christmas dinner when Caroline’s mom handed me a large platter to dry. I still managed to drop it; it slipped out of my hand and shattered to pieces on the floor, so loudly that hearing the full force of it threw me back in shock. I froze, and then, like a terribly guilty and clumsy child, ran to the bathroom and started to cry. I felt completely absurd, but I couldn’t stop. Did they really want me here? Did they just feel sorry for me? A bowl
and
a platter? Really, Beck? Probably heirlooms, passed down carefully from generation to generation, used especially for the Christmas feast. Which I had ruined.

Susanne followed me and stood so close to me that I could barely see her face. She knew that, though, and was doing it to make sure I heard every word that she said. “Becky,” she told me, using my family nickname, the one that my parents use, “you must know that you are more precious to us than all the china in our cabinets.” I tried to stop crying, to stop acting like a child, to believe this kind, generous woman who I knew meant it. What I really wanted to do, though, was sob in her arms, to ask why it was always me needing help, why I couldn’t be the helper. It was all I had ever wanted to do. It made me so happy to help. Instead I just stood there, nodding, wanting to reassure her, not wanting her to feel bad about something I’d done. Twice. In one day.

• • • •

My gratitude to the universe for bringing Caroline and me together is unending. What I can sometimes forget is that she feels as grateful as I do. So once when Susanne saw me thanking Caroline, for what was probably the umpteenth time that day, for helping me find something, she came over and sat with me, putting her hands on mine, again keeping her face close to mine, so that I could hear every word. In her firm yet calm second-grade-teacher voice, she told me how much I had changed Caroline’s life.

She told me that before Caroline had met me, she had been so unsure of herself and what she wanted to do with her life, and had kept herself walled off from the world. That getting to know me helped her have the confidence to become a spin instructor, and that my encouragement is what made her brave enough to apply to graduate school. She is now a social worker, which is a job that fits her perfectly, because she, too, loves to help people.

Caroline and her mom told me that I brought her back into the world. They told me a story about a day when Caroline’s father had come home, jubilant, after dropping her off at the jitney to return to the city after a spin training course she’d attended out in the Hamptons. Usually Caroline stayed slouched in his car until the bus arrived, and then, at the very last minute, dodged to it alone. After we met one another, though, and they drove up, she saw me waiting there and eagerly got out, telling him she was fine and that he could leave. Caroline walked up to me and we talked for the whole ride back to the city. Such a small thing, but so enormous and triumphant to her parents.

I had trouble imagining the Caroline that they were describing. Though I knew these things about her—the depression, the eating disorder, the need to be alone—it was so hard to connect them to my hysterically funny, outgoing, driven best friend. Knowing that I was a part of that change, and that while my help didn’t show in the way hers did, in all of those small everyday things, it was there, made all the difference, as did hearing the words that her mother said. “Caroline helps you, yes, but you have given her the confidence to overcome obstacles and take on challenges she may never have taken on. Her father and I are forever grateful to you. Never underestimate the good you do.”

I can’t begin to describe how much those words meant to me. Being acknowledged and appreciated, for all of us, is an essential part of living a life that we feel good about because we are reminded that we matter.

Just saying to someone, “Thanks for being such a good mom” or “You’re a wonderful friend” can mean so much to people. So I forgot about the platter and just basked in the love of this wonderful family, who had become a part of my family.

But I stayed away from the china
cabinet.