This is what he told us, and Alan and Peter, and everyone we told afterward, were jubilant.
But this is what I heard: We are going to drill a big hole in your head. I didn’t want a big hole drilled in my head. I remembered all of the surgeries after my accident and was sick at the thought of having to go through all the pain and grogginess and recovery. Intellectually, I knew that this would be a much smaller surgery with far less recovery time, but emotionally that information wasn’t helping. Then they were going to put a device in my head large enough that I would be able to feel it. Feel it on the outside of my head, under the skin. On the outside, the piece that connected the implant to the little box that transmitted the hearing would attach to my head magnetically. Like on a fridge. I wondered briefly if a little fridge magnet would be able to stick to my head, too. I knew that Caroline and I would end up trying it.
If everyone had been excited before, things had now reached a fever pitch. Word spread quickly, and every family member and friend reached out, so excited for me. There are tons of YouTube videos of people having their cochlear implants turned on for the first time. Toddlers who’ve never heard before looking up in wonder as they hear their parents’ voices. Or a mother hearing her children, her eyes widening with joy. You can’t help but cry; it’s amazing.
Except, it’s not that easy. In fact, it’s not like that at all. Yes, they are hearing sound, and, especially if you’ve never heard anything before, that is extraordinary, but it in no way resembles any kind of thing that we would associate with a “voice.” For many people, especially those who’ve had hearing previously, after a period of adjustment, a voice will start to sound like a voice, a dog’s bark a bark, a song a song, though even when it does, there is an artificial quality that never goes away. It might seem like a small price to pay, but it doesn’t feel like it when you’re on the receiving end.
The two other women I know with Usher III, Wendy and Cindy, who had both been implanted, urged me to do it, saying it was the best thing they’d ever done and that they both wished that they’d done it years ago. Wendy told me that after she was implanted, she went to see the movie Lincoln and heard almost every word, and I knew that was about the wordiest movie ever. That seemed so far beyond my reach that I found it impossible to imagine that that could be me. Also, my disabilities had always seemed to be years behind theirs, much less advanced. Maybe I wasn’t ready, maybe I should wait, I kept thinking to myself, trying to give logic to my fears.
Implants are also a very controversial thing in the deaf community. Part of the reason is that the deaf already have their own language and a very rich and lively culture, and don’t consider deafness to be a disability. Another is that it doesn’t work for every kind of deafness. Still another is that for many people who have never had hearing, it is unbearable noise, and, after the difficult surgery and mapping process, they are never able to discriminate sounds to recognize what they’re hearing except loud noise.
Cochlear implants are wildly expensive, too. I knew I was so lucky to be able to have surgery to improve my quality of life, surgery that my insurance would mostly be covering, and that my family and I had the means to pay for the rest of it, which so many people do not. I knew I needed to stop freaking out and just be grateful and hope for the best.
Of all of my friends and family, only Daniel was a voice of dissent. He urged me to consider acupuncture, to do meditation and yoga, assured me that he and I and many others could cure ourselves of our ailments. I wanted to ask him how that was going for him, but instead I just became vague and noncommittal and decided I wouldn’t talk about it with him again. I was scared enough as it was, and I could understand Danny’s perspective, when he had tried so many Western medicines and procedures, to no avail. I knew that he just wanted to try to protect me.
I also knew that Daniel was stuck and had been unable to make any kind of move to help himself change that. I see so many people who are stuck: in their jobs, their grief, their relationships, their anger. People who, for whatever reason, can’t move on. In my practice, I do my best to help them become unstuck and move forward. To help them recognize whatever it is that’s holding them back from the life that they want, and to help them get past what’s holding them back.
Unfortunately there is no way to simply get “past it,” “over it,” or “around it”; the only way is to go “through it.” Or for those who like catchphrases, you have to “feel it to heal it.” In my life, I’ve never done anything that I’m proud of without having to work tirelessly at it. As far as I can tell, there are no shortcuts to this process, just work. Just doing it every day. I push my patients to break through these barriers; I push my spin classes to work harder, to get past what they believe their limits are and find out what they are truly capable of.
People tend to get so stuck in the unhappiness of their lives because it’s familiar, and they find comfort in the discomfort because it’s predictable and what they know. Breaking that cycle requires you to face your fears, to explore the unknown, and to let yourself be afraid and vulnerable.
So, despite my fears and apprehensions, I decided to schedule my surgery for the earliest date that I could: May. Right after I did I wanted to put it off for longer but I didn’t, because I knew that there was never going to be a “right” time to do it, and I wasn’t just going to wake up one morning and feel ready for it. My family was already making their plans to come, rescheduling their lives so they could be there for me, and working it out so that my mom’s and dad’s time with me didn’t overlap. All that was left was to get my vaccinations, get my work in order for the time off, and wait.
Alan was deep into implant research, laying out the pros and cons for me. My thoughts and anxieties piled on top of one another. The what-ifs came rapid-fire, and I couldn’t, at first, remember a single reason why this was a good idea.
As the date drew closer, I felt more and more scared. And that’s when I realized: I was stuck. I had so many fears, and, even more, so much sadness that this day had come and that my Usher was so far advanced. I really was becoming the girl who was blind and deaf. The implant would almost surely make my life better. It would undoubtedly eventually make it easier. But the devil I knew was still drowning out the brave voice, the one that knew I should do it. I had only been able to focus on the negative, because I was so scared.
I knew what I needed to do, which was to follow the advice that I give to my patients: acknowledge the loss, and allow myself to be in the present and feel the sadness and the fear, so that I can move into the future.
When I was younger I never understood that I would lose this much and never really believed that my hearing would get this bad. Now it had happened, but I was afraid to let go of what I did have: genuine sounds. Amplified where I didn’t want them sometimes, and too quiet for the things I did want to hear at others, but my mother’s voice was her voice, and Caroline’s laugh was her laugh, and Olive’s annoyingly loud bark was her bark, and I knew that it wouldn’t ever be the same again with the implant. If I had a child, I would never hear her genuine cry or the authentic sound of her voice. They’d tinker until the implant approximated sounds as best as it could, but it wouldn’t ever be real again. That is what plagued me most.
Then, I admit, came the more shallow thoughts: I didn’t want them to shave a part of my head. Everyone would see the implant if I was wearing a ponytail, which I pretty much always do. I’d also have a little device that I’d have to put somewhere. I’d look like I was in the Secret Service; I couldn’t decide if that was better or worse than looking like I had a cochlear implant. I was a single woman in New York, and an implant (coupled with a cane) is decidedly not sexy or pretty, though Alan kept saying that it didn’t matter, that I was gorgeous and nobody would care and if they did, fuck them. If only all men thought that way.
Then, finally, the other voice inside of me, which had been patiently waiting its turn, waiting u
ntil I was ready to hear what it had to say, told me, “Yes, but you’ll be able to hear.” I’d be able to hear. I wouldn’t check out in the middle of dinner. I’d be quick and witty again, not just in texts or emails but right there, at the table, making people laugh and laughing the first time someone told a joke. I’d be able to go to the movies, and they’d be more than just an expensive nap.
Helping other people, quite literally, helps me. It makes me better able to accept help. It empowers me, gives structure to my world. It lets me know that I am useful and able, and it feels so good. It has always felt good, but as I grow to need more help, I need that feeling more. The implant, the idea of which kept me up at night fretting, would help me to do that. I would be able to keep my practice, even when I was completely blind. Even if my clients’ voices sounded like Alvin, Simon, and Theodore’s, or like aliens’, I’d have the word discrimination to hear them. Even if I hated the sound, I would hear the words and remain truly able to listen.
I repeated these things to myself when I had trouble sleeping. Breathe in peace, breathe out fear. I’ll always be able to listen to and really hear my patients; I won’t have to stop my practice someday. Breathe in peace, breathe out fear. I won’t have to say “what” (I hope) fifty times a day anymore. Breathe in peace, breathe out fear. I have recovered from so many things—my accident, my eating disorder—and I have dealt with my disabilities as they have gotten worse, and this is a good thing. A scary thing, but a good thing. Breathe in peace, breathe out fear.
I could have waited on the cochlear implant, until one was “completely implantable”—meaning it wouldn’t show. I considered it, but it could have been two years or more until that was available, and I qualified now. I knew that it would be a disservice to me, to my patients, and to the people who loved me to wait. It is human nature to believe there is always going to be something better in the future, but I couldn’t live for then, I had to live for now. I had to make choices now, and my choice was yes, I would get the implant now.
• • • •
A few days before the surgery I had an MRI on my right knee, which had been hurting for the past several months. Once I was implanted I would never be able to have one again, because there would be metal in my body permanently. The news from the doctor wasn’t surprising: I had been favoring my right knee ever since the accident, and there was nothing to be done about the joint pain. He suggested using it less, which clearly wasn’t an option, and referred me to a physical therapist. I promised to see him just as soon as I found the time, wondering when on earth that might happen.
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.
51
On 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.
Not Fade Away: A Memoir of Senses Lost and Found Page 20
