• • • •
Over the next couple of weeks I kept my hearing aid out of my other ear as much as possible, because hearing from only one side is mostly nauseating and confusing, like having one ear completely clogged after an airplane flight, a feeling that I prayed would pass, because once the implant was turned on I was supposed to use it solo much of the time, to help me adjust. The sounds I heard coming through it would be so distinctly different from the way they sounded through my hearing aid that the doctor and audiologist had told me that I should get used to the implant before integrating both. I walked around like a drunk teenager, unable to keep my balance without holding on to someone.
I couldn’t imagine how different everything would sound once my implant was turned on, but I tried to remind myself that everyone hated it in the beginning and that I had to be patient.
I’m so fortunate, I told myself. Modern medicine was on my side; it was rooting for me, giving me the blessing of hearing, and maybe, maybe, someday, the blessing of sight, though I couldn’t fathom being fully hearing and sighted any more than I could imagine being completely blind or deaf.
52
Three weeks after the surgery, I went in to have my implant turned on. That morning, Alan and Polly crowded into the small audiologist’s office with me. They were so clearly excited and hopeful, and I sat down, squeezing my hands tightly together to try to relieve my anxiety a little. I was still so afraid of what my new ear was going to sound like and of hearing completely differently for the rest of my life. Laurel gave me the magnetic headpiece to place on the side of my head, and I held it there until she told me to let go. It stayed put. At first I was afraid to turn my head or make any sudden movements, but I soon realized that it was held fast by the magnet inside my head. I wondered aloud if other things were going to stick to it, and she joked that I might feel pulled to the fridge when I was near it. I’m already attracted enough to the fridge, I thought, but I knew my voice would shake too much to pull off a joke right then.
Before Laurel turned on the implant she assured me that whatever I heard would be normal and that my brain would adjust in time. The room was silent as she turned it on, and the first sounds started to come through. I couldn’t tell yet what I was hearing. I felt a pulsing like I would during a hearing test; it was as though I could both hear and feel the reverberations from the side of my head. Laurel and I were signing to one another as she sent me tones, which all sounded high and eerie. Then she spoke: “We’re on. Can you hear me?”
It was shocking. I felt as though I had just unknowingly walked into a room full of people who’d yelled, “Surprise!” and my brain was trying to catch up with what was happening. So naturally, the first words that came from my mouth were: “That is fucked up.” I apologized to Laurel as I covered my mouth with my hand, and then said it again, my own voice sounding unbelievably strange. “Is that me?” I asked, though of course it was, but my brain just wasn’t understanding. Everything sounded very high-pitched and monotone, and initially it seemed as though their voices were coming to me from inside my head. Alan started to talk and his voice sounded so high that I whipped around in my chair. “Holy shit! Is that you?” He laughed and it sounded squeaky and evil. Like a high-pitched, cackling devil. The tone of his voice sounded exactly the same as the tone of Laurel’s voice. I was stupefied. Have I given up my little bit of real sound for something completely robotic and digitized and . . . creepy? Don’t cry, breathe in peace, breathe out fear. I had a feeling I was saying “fuck” more than people generally do, so I tried to mostly sign it.
My tinnitus was still there but it was drowned out a bit by the fact that my new hearing seemed to be coming from the same place my tinnitus does. Half of me wanted to rip the implant out of my head, but the other was hugely curious to find out what this crazy thing could do.
Laurel took me through several words. “Baseball.” “Ice cream.” “Popcorn.” I somehow managed to get most of them right, not because I was able to hear the words as much as I was able to discriminate how many syllables were being spoken. I was blown away that I could distinguish anything at all on the first day. I heard her say, “I like ice cream,” so I repeated it back to her, and when she nodded her head at me to let me know I’d gotten it right, I couldn’t help but feel like this was some kind of a game or sport that I could be really good at if I practiced. I thought to myself, I am going to work as hard as I can to rock this thing.
After the testing she took the headpiece off and began to take it apart to show me how to care for it. There were an unbelievable number of things to remember—buttons, lights, batteries, one thing clicking into something else, magnets, a swim cover—all for such a small device. Well, small until it was attached to me; then it felt gigantic. She was telling me a million different things and I was catching very little of it, because I was still so overwhelmed and only had my hearing aid in my left ear, but I knew that Polly was taking careful notes and Alan was watching everything with his usual laser-beam attention. He loves gadgets, and this is one to end all gadgets. He knows so much more than I do about all of this stuff that he should be the deaf one.
Caroline finally showed up, racing from work, and I just wanted to hand it all to her to figure out and take a nap. I was still reeling from the sounds, and I didn’t want to put the headpiece back on when Laurel handed it back to me. She told me that I should wear it all day and take out my hearing aid for at least an hour or two to practice listening with it on its own.
Laurel also told me that I should try my best not to lipread. She said that I was better at it than anyone she’d ever met, which seemed unlikely to me, because I have less vision than most, but I loved hearing it, because in my world it’s a coveted skill. I wanted to lipread, though, I love it, but she explained that it would hinder me from learning to hear with just my implant. Lipreading has been somewhat of a lifeline for me, and it is a huge part of how I hear, so although I’d have loved to be able to hear without it, I still couldn’t imagine that it was possible.
As we were leaving, Laurel called out, “Oh, I almost forgot, no signing! Try to rely on the implant completely for now.” What? As soon as we thanked her and got into the elevator, Caroline and I started signing. To not sign or lipread at all right then seemed impossible. I needed to explain to Caroline how I was feeling, and signing was the best way for me to do that. “No signing!” Alan chided, and Caroline shot him a glare. This is typical Alan and Caroline. They both want to support me but go about it in wildly different ways.
When Alan and I got back to my apartment, I took off my hearing aid and just had the implant on, and I could understand some of what he was saying, which I didn’t even notice until he pointed it out. It didn’t sound remotely like him, and every time he laughed he sounded like a demon, and I had no idea how it was making sense, because it didn’t even seem as though I was using the same part of my brain that I usually did to hear. It was as though it was going through another channel altogether, but nevertheless, I seemed to . . . hear him? That didn’t feel like what it was. To be able to discriminate some of the words? To understand him.
Laurel had said that people should read to me as much as possible, but to start with simple things. I remembered that Cindy told me that she watched a lot of soap operas to relearn sound, because the simple, dramatic dialogue was easy to understand and follow. That sounded unbearable to me, so instead, over the next week, Polly read me People and Real Simple and other magazines. I heard about Paris Jackson’s suicide attempt and how Kate and Will were preparing for their baby. I got tips about reorganizing the kitchen, or maybe it was prioritizing; I wasn’t hearing that one as clearly.
That first night, Caroline slept over, and before we went to bed she sat next to me, and, for the first time ever, she was on my right side. She read me The Runaway Bunny, and I was like a child, relearning from the most basic of words. She read slowly, enunciating each word carefully, and when
she finished we snuggled with Olive, who planted herself firmly between us. Good night, my little bunny, I told Olive. I had made it through the first day. Breathe in peace, breathe out fear.
53
Six 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.
54
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.”
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When 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 wonderfu
l 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.
Not Fade Away: A Memoir of Senses Lost and Found Page 21
