Not Fade Away: A Memoir of Senses Lost and Found (22 page)

S
ix months after my surgery, what I could hear with my cochlear implant was remarkably different from what I heard during my first few months of bionic hearing. The sounds were no longer all high-pitched and monotone; I had much more discrimination, though everything still sounded robotic.

Hearing has been hard work for me for such a long time now—I don’t know that I’ve been able to hear anything easily since childhood—and I have had to keenly focus whenever I want to hear what’s being spoken or what’s happening around me. It can be so exhausting that I often end up tuning things out when it becomes too big a struggle. I hate to accept defeat and do that, but sometimes it’s just too hard.

Learning how to hear with a cochlear implant, at first, complicated the hearing process even more, because the sound is digitized. That means that not only did I have to intently listen, I also had to try to discriminate and make sense of the new
type of sound I was hearing. During the first six months of activation, people are encouraged to either go to bed two hours earlier each night or to take a nap during the day because it can be so exhausting. Most of the time I wished I had time for both.

Although I still struggle quite a bit to hear—hearing with one acoustic ear and one bionic ear has been the hardest part of this process, because the sound my brain is processing simultaneously with both ears is completely different—my discrimination with my implanted ear has improved tremendously. At almost three months after my activation, I had my first official post-implant hearing test. Before I had been implanted, my right ear had only 26 percent discrimination with the use of a hearing aid, and it had jumped to 76 percent since the surgery. Although I might not always feel like I hear 76 percent of what is being said to me, the numbers speak for themselves.

My left ear had been my stronger ear since I was a little girl unknowingly cocking it toward voices or the television. I had never used my right ear on the telephone; it was simply a lost cause. Now I use my right ear exclusively for it. Although the sound is still a bit distorted and will never sound like natural hearing to me, it is much more crisp and clear than the hearing I get with the help of a hearing aid. When people ask, I often tell them that the difference between using a hearing aid and using a cochlear implant is like the difference between hearing sound recorded on a poorly copied cassette tape versus hearing the same sound played on a CD.

It didn’t happen overnight, though. It has come with countless hours of listening therapy, patient family and friends, and an
eager brain. The most crucial component to this whole process has been my determination.

I thought I would be worried about how it looked, but I do not even have the time to think about it. Plus, my cane, which I use more and more now, is so much more obvious that I’m sure no one is paying attention to my
ear.

I
have found so many times in my life that there is no way to accept pain and sadness other than facing it head-on and allowing myself to feel it. I don’t think most people can really move on unless they do that. Feelings are easy to bury, but they often come back even more strongly, or manifest themselves in far more destructive ways. We’re so afraid to be vulnerable, to let ourselves feel deeply. We equate crying with weakness or childishness, but I think it’s the opposite. Before children unlearn how to cry, they can express their emotions and then move on. If they fall down and skin a knee, or a friend hurts their feelings, they may cry, and then when they’re done, it’s over. I have so many patients who don’t cry outside of my office, but who, when they finally let themselves break down, feel better afterward, relieved and more at peace.

That’s how it was with the cane. I let myself hate it and be sad and cry. Then there were nights that started to come when I didn’t cry (and some where I still did), but I would sometimes feel more confident, not less, with the cane’s help. One of those nights, as
I made my way along the sidewalk, I noticed a woman walking close to me. I got to the street corner and waited for the crosswalk signal, and as soon as it changed she announced loudly, while looking straight ahead, “You can go now!”

Despite not being able to see the sidewalk, I could still see what was directly in front of me with ease. I wanted to tell her this, to say, “Thank you, but I don’t need your help.” But I didn’t. I just made my way across the street, saying nothing.

Then she did it at the next light. And the next. I itched to say something, to show her that I wasn’t really blind and that I was not in need of anyone’s help. But I didn’t. Instead I made myself do something that was one of the hardest things of all for me. I allowed myself to be blind and accept her help. I waited for her voice at each corner, and then, after several blocks of silence, I simply turned to her and said, “Thank you.”

Those blocks of silence started out by making me feel incredibly uncomfortable. Part of me felt like I was lying by not letting on that I could see, at least a little bit, where I was going. Another part of me was desperate not to accept her help. I could see very little peripherally, but I knew there were other people who could see and hear us, and I was embarrassed. Then, as the blocks went on, I started to think,
So what?
I was only going to make life harder on myself by not accepting help. At some point, I was going to need this. Not just my friends and family, but the kindness of strangers. Already it was better for me to have a second set of eyes; if a car came flying through a light or around a corner I might not see it, but she would. I’m sure that she felt better knowing that she was helping me, and I needed to let myself feel better about it, too.

This, I realized when I got home, was as important a part of my training as the cane itself. Fact: Disabilities require help. Fact:
I hate help. The disabilities weren’t going to change, so I was going to have to.

• • • •

Today, I love my cane. I still don’t like taking it on dates, and I usually don’t need it during the day, but it has now become indispensable to me at night. I feel more confident when I have it with me, and safer. I am not uncomfortable being alone, but walking down a dark street can be scary. I wonder now: When I have my cane, does it make me more or less vulnerable? Will a mugger or a rapist feel sorry for me and not want to rob or hurt a blind woman? Or does it just make me an easier target?

I always use it now when I’m traveling, if I’m at Penn Station or the airport. It makes things easier, and it generally alerts people to get out of my way. I used to be really self-conscious, but now I realize that I can’t really see who’s watching me anyway, and people are generally pretty helpful. So, I just have to go with it. I’ve also realized that people are never looking at you as much as you think they are. People are generally preoccupied with their own lives.

Perhaps my favorite thing about using my cane now is the type of responses and comments I get. While traveling, I have been asked several times by airport and train station agents whether I need assistance to my gate. When I tell them that I do, immediately their next question is, “Do you need a wheelchair?” Somehow people seem to have a difficult time keeping their disabilities straight. Luckily, my visual impairment does not impede my ability to walk. At these times, I have been tempted to say, “Uh, no, I’m likely in better shape than you are,” but I don’t. I simply say, “Nope, my legs work just
fine.”

W
hen I met Peter and his wife Alison’s infant daughter, my niece, Ava, I fell in love immediately. She was mine, my little darling, a gorgeous adventure for the senses. The gentle tenderness of her soft skin. Her sweet milky breath, warm on my face. I cupped her fragile, beautiful little head in my palm and touched the tip of her tiny nose and her rosebud lips. I felt the warmth of her forehead as I placed kiss after kiss upon it, and the little pitter-patter of her heart when I pressed her against me. She was, without a doubt, the most wonderful baby on earth. My mother and grandmother hovered around us, beaming, four generations crowded together, and I knew that they were both longing for this for me, wanting to huddle around my baby, to see me have everything that other women have.

• • • •

My mom and I were on the phone recently as I was walking home from my office, exhausted after a long day with patients. My ears
were ringing and worn out, and I had forgotten my cane, so my eyes strained to focus on the little bit of sidewalk I could see; I was glad it was a short walk that I was familiar with. We were catching up on all of our unimportantly important goings-on until the conversation finally took the turn it always does once I start to exhibit signs of wanting to hang up, one that I’m sure is familiar to many other single women in their thirties. It was time to entertain my mom’s favorite subject: my love life.

“So, any men in your life these days?” she asked, just a bit too casually.

The dreaded yet entirely expected question. Oh yes, Mom, did I forget to mention that I just met the man of my dreams? It was not that there were no men in my life “these days,” it was that there was nobody worth reporting home about, and I learned long ago that indulging my mom with the nuances of being single and dating in New York is like reading a fairy tale to a child who is hanging on my every word. So I told her about a date I had coming up with a guy I knew next to nothing about, except that he was attractive and had approached me at the gym while I was on the stair climber. As she pressed on for more details, I realized that she was already starting to play house with the idea of this new stranger whom I had idiotically introduced into our conversation. There was a strong likelihood that either he or I might cancel (in truth, probably me), but for the sake of my mom’s hopes for my romantic happiness, and fervent desire that I will one day produce grandchildren, I feigned greater excitement over the whole thing.

“Whatever happened to Jon?” she asked. “You seemed to really like him.” I rolled my eyes at nobody but myself, for not realizing that of course my mom wouldn’t be satisfied with the fact that I was just going out on a date. She wanted me to be
“proactive” about my love life and my future. My mother tells me constantly how proud she is of me, and I know that she just wants me to be happy and to have a full life. She wants my future to be secure—and, of course, her own future as the grandmother of my children—and she clearly doesn’t see my disabilities as an impediment to any of this.

“You have a double master’s from Columbia,” she’ll tell me, “that’s an amazing accomplishment for anyone. Who wouldn’t want to be with you? Your disabilities don’t matter, you’re so beautiful and smart and funny. Anyone who doesn’t want to be with you is crazy.”

When I arrived at my door, the conversation had wound down, as it generally does if I answer in the noncommittal affirmative on this subject for a while (“Mmmhmm. Uh-huh. Mmm . . .”). All I wanted to do was open the door to my sweet Olive and take my ears out, spending the couple of hours before bed in blissful silence, with all the puppy love I could handle.

“Well, I love you, Mama,” I told her.

“I love you, too, sweet girl.”

“Okay, talk to you soon.”

“Yep, sounds good. Hey, Becky, you’re thirty-four now, just to be safe you might want to look into freezing your eggs.”

Really? How did my mom know that at ten
P.M
. on a Tuesday night, there was nothing I wanted to discuss more than freezing my eggs “just to be safe”? Are you fucking kidding me?

• • • •

As a child I never gave much thought to motherhood. I don’t remember thinking about how many kids I’d have or giving much thought to whether I’d have them at all. I know that in New York
egg freezing has become commonplace for women in their thirties, but until that moment I hadn’t even considered the possibility, let alone thought about the fact that I might get to a place where I was so desperate to have children that I would consider it.

The idea of my being a mom probably freaks some people out. It occasionally freaks me out. Or maybe it makes some people sad, because they couldn’t fathom the idea that that’s something I could do. I know that I would be an awesome mom, though. I have a tremendous amount of love and energy and compassion to share, and I love to teach and laugh. I adore kids, and making homemade art projects, and playing those fun hand-clapping games like Miss Suzie and Down by the Banks, and I know every camp song under the sun. I also have incredible role models: my mother, Polly, Caroline’s mother, my amazing grandmas.

I’m thirty-four, and I want what most people want: A partner who loves me for who I am, unconditionally. I want children, and I want so much to be able to look into their eyes and to hear their first words. I want a home full of love and laughter. I hope that this is something that I can, and will, have. I am not going to settle, to feel as though I’m damaged goods because of my disabilities. We all have our shit—mine being, admittedly, big stuff—but I have to believe that the right person is out there for me, someone who wants and needs me as much as I do him. I believe that there is someone, probably several someones, out there for all of us, we just have to open ourselves up: to following our hearts, taking risks, and knowing that nothing is a guarantee, but that true happiness can’t come without taking chances.

There are doubts that creep in, though, even as I think about holding a baby in my arms, watching a little kid grow up who inherits my goofy sense of humor or maybe my blue eyes. I know
how much a child can learn from having a parent who has a disability, and that it can instill a huge amount of compassion and empathy. I also know, though, that there would be times when he or she would have to make compromises, miss out on things with me, and probably have to learn to do some things on his or her own before other kids. Of course, I would want to teach my children independence and how to handle difficult circumstances, but I would also never, ever want my children to feel the need to take care of me, or be my guide dog, or to ever feel like I couldn’t take care of them. To accept help from other people is hard enough.

As sure as I am that I would be a good mother, though, and a joyful one, I believe that if I don’t have children, my life will still be rich and full. I have experienced enough uncertainty and loss to know that life is too unpredictable for me to try to guess what’s going to happen in the future. Like a lot of single women out there, I’m looking. I have gone on and off of dating sites. I know a singles-guru matchmaker who takes my spin classes who has convinced me to go to many of her events, including a memorable one on a boat, where I spent the evening tottering around in ridiculous heels, the whole thing loud and dark enough that I couldn’t see or hear much of anything. As scary as it sometimes is, though, I put myself out there. I’m not closing any doors, but I’m not holding my breath, either.

• • • •

Finally I got to my door and, as quickly as I could, blurted out, “I’ll think about that, Mom. Love you,” and hung up the phone before she could get another word in. Maybe I would think about it, but right then I knew Olive was wagging her tail furiously on
the other side of the door, desperately waiting to jump all over me as I fumbled to get the key into the lock, never an easy task for me. When I got the door open she leapt into my arms, her licking, panting, joyful puppy love an instant balm, and right then she was all the baby that I needed.