Not Fade Away: A Memoir of Senses Lost and Found (21 page)

Two days before my surgery, after I had seen my last patient, I closed my office door behind me before quickly reopening it to take one last look—I wanted to be sure I had everything and that I’d left the space tidy and inviting to come back to. I wasn’t sure when that would be—just a couple of weeks, I hoped, though it would most likely be at least a month. I had originally thought I could go back to work within a week, but I was quickly disabused of this notion.

Leading up to my surgery, what I had mostly said to people about it was that I was “getting a hole in my head.” I knew it sounded silly, but it was the only way I knew how to tell others without having to reveal my sadness and fear about the whole process. Caroline and I would joke about “pimping my implant” and she promised to get a BeDazzler and make it all snazzy.

As I walked home, the streets around me were mostly deserted with the exception of a handful of people walking their dogs and a couple of men in suits carrying briefcases with a look of exhaustion on their faces and in their shoulders. I was happy to have the sidewalk mostly to myself. When I got home, Olive greeted me with her usual overwhelming enthusiasm, as though she hadn’t seen me in weeks. Her tail wagged vigorously as she rested her front paws on my knees and licked my face. It was one of the only times when even my sweet little Monkey couldn’t pull me out of my funk, though her warm body against mine couldn’t help but make me feel a little better.

The sense of loneliness and sadness overwhelmed me, though, and I knew what I needed to do: mourn what I was losing. Say good-bye to my ear. When I’m alone, I often feel most comforted by taking a bath. It’s a typical New York tub: not long enough for me to straighten my legs, and not as deep as I’d like, but still, sliding my body into the warm water calmed my body and my mind, and as I lay there, with my head back and my eyes closed, and felt the warmth of the water softly embrace my whole body, I finally relaxed and let the tears come. They started slowly, but before long I was sobbing, letting it all out: the fear, the sorrow, and the hope, too, putting it all out there. I touched my ear and apologized to it. I know that might sound silly or strange, but I was sorry. It had done the best it could, and it would never be able to do its job again. I was apologizing to myself, and I was crying out of exhaustion. I was so tired of trying to keep up with everyone and live my life like everybody else, as though I was fully hearing and sighted. I knew, too, that I had many months of worse exhaustion ahead of me, and I hoped—prayed—that things would get easier. That’s why I was doing this, to make my quality of life better.

O
n the morning of the surgery, Caroline, my mom, Alan, and I arrived at the hospital at six thirty. I hadn’t slept much, was terrified, and, awesome, I had a UTI. I changed into my hospital gown while Caroline, ever vigilant, put things away, keeping everything off the floor and as MRSA-free as possible. She had brought my pillow for me, and it was double pillowcased and tied tightly inside a garbage bag. I flashed Alan my hospital-provided granny panties from the exposed back of my gown. He rolled his eyes, Caroline cracked up, and my mother scolded me.

Dr. Roland came in and I tried to stay calm.
Breathe in peace, breathe out fear.
I was still worried about the implant that I’d chosen, wondering if I should have gone with a different one, second-guessing myself about a decision I’d made weeks before.

My mom and Alan kept the doctor busy, peppering him with questions. Alan asked about the medication and whether it would make me constipated. It was like having two Jewish mothers in there with me. After that Caroline signed only the important questions to me, because she could tell that at that point I was
happy to let them take over. She climbed into the reclining chair with me, and I put my head on her as Alan rubbed my feet. I needed to be touched right then, to feel anchored. Then I got up and did push-ups and triceps dips and wall sits, trying to calm myself down. Caroline tried in her own goofy way to help, too, putting on my operating cap and blowing up the plastic gloves into five-finger balloons.

Soon the anesthesiologist came in and talked to me, and I made it clear that the thing I was most concerned about was the pain medication. I hadn’t forgotten the excruciating pain of my accident, and I just wanted there to be lots and lots of drugs waiting for me when I was done.

When it came time for me to go, my mom and Caroline and Alan all took turns reassuring me, and then the nurse wheeled me off to the elevator, not letting me walk.
Nobody gets to walk,
she told me. While I waited to be wheeled into the OR, Dr. Roland chatted with me, probably trying to calm my nerves, telling me about his son graduating from college and what he and his family would be doing for Memorial Day weekend. When they finally wheeled me in and I lay down on the cold operating table, I wished that I had one of Lisa’s music mixes, but, of course, I thought with half a smile, I couldn’t hear it anyway. I asked them to please not count back from ten when it was time for the anesthesia, and I lay back and closed my eyes,
Breathe in peace, breathe out fear,
and the next thing I remembered was waking up, sick and groggy, and asking the nurse if I could have someone come up to help me communicate, since I no longer had any hearing in my right ear and I wasn’t wearing my left hearing aid because my whole head was wrapped in a bandage, turban style. I didn’t have my glasses, and my eyes were blurry from the drugs. She was impatient with me, telling me to sit quietly and that she would get
an interpreter, but I knew that I needed my mother or Caroline, that I was not in any kind of shape to talk, let alone sign, with a stranger. I felt so helpless and disabled in that moment, and I needed someone who really knew how to communicate with
me
.

Caroline told me later that she was frantic to get to me after my surgery—she knew that I would need her—and that she finally just ignored the nurse and came anyway, brushing past people and into the recovery room. I grabbed her hand, relief coursing through me. In this moment, I saw a flash of what my life could have been like, completely blind and deaf and walled off from the world, having absolutely no real way to communicate. It was so terrifying that it briefly cut through my wooziness, and in a momentary flash I understood what a gift this implant was, and what it was saving me from.

We were able to go home later that day, but for the next two weeks I felt dizzy and fragile, and there was much more pain than I had expected. My mother stayed with me for the first week, sleeping on the couch and taking care of me. My mom is one of the only people whom I can let take care of me completely. She cooked, cleaned, and wrote down the food menu for the day on a large, white dry-erase board. For one of the first times in my life, though, I felt unable to eat. Nothing seemed to work for the nausea and vertigo, until a friend brought me some pot cookies, and it was clear to me five minutes after the first bite that medical marijuana should be legalized right away.

Two days later, Caroline made a whole contraption to wash my hair. She set up pillows in the bathroom, put a huge garbage bag over all of them, and got in the bathtub to wash my hair. It reminded me of my accident, but this time I wasn’t looking forward to it. I didn’t want to unwind my turban, and when I did I wouldn’t look at the surgery site, though my Mom and Caroline
told me enthusiastically that it looked great! Much better than expected! They finally took a picture of it on the phone to show me, and I saw that they were right. The sutures where the scar would be were well hidden behind my ear, and though the other people I knew who had been implanted had to have a large spot on their head shaved, mine was very small.

• • • •

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.

T
hree 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.