Not Fade Away: A Memoir of Senses Lost and Found (20 page)

D
r. J. Thomas Roland, the chairman of otolaryngology at NYU Langone, who would be performing the cochlear implant surgery, is one of those people who exudes so much competence that you could actually trust him to drill a hole in your head. As I sat in his office while he explained the process to me, his calm, deep voice and big, capable hands would have been reassuring if I hadn’t been so terrified. Alan and Peter were with me and listened, enthralled, nodding at the right moments, while I sat completely still and gripped the armrests of my chair. One of the few times I’m not fidgety is when I’m scared.

Dr. Roland told us that he would be making an opening behind my ear, so he could drill a small hole on the surface of my skull, just under my scalp, where the implant would be nestled. The implant, which is about the size of a silver dollar, is then connected by a thin wire to electrodes that would be carefully inserted deep inside my ear, snaked around the tiny, snail-shaped cochlea, inside of which most of my hair cells are now dead. Usher syndrome has killed nearly all of them. In a normal ear,
those thousands of hair cells convert sound into electrical impulses that travel via the auditory nerve to the brain.

Once he closed me up, I would get all the external gadgets that I needed in order to communicate with the implant. There was a headpiece, a small round cap that would magnetically adhere to my head at the site of the implant, which would then be connected to a sound processor that would take the noise of the outside world and send it into my head. My right ear would be essentially decorative at that point, as the electrodes deep inside my inner ear would now and forever do the job of my dearly departed hair cells.

Even though my right ear was growing increasingly useless, I took some comfort in knowing that if a bomb went off, I could still probably hear it. The cochlea is extremely delicate, and even though Dr. Roland was the best of the best, once he snaked that electrode array into it, whatever few hair cells I had left would probably be too traumatized to survive. Thus, my right ear would become completely bionic. He explained that preserving inner ear function is more and more possible these days, and that the surgery and recovery are generally very easy, and I should be able to go home within a day. Apparently my auditory nerve was fine, and I was an ideal patient, and, because I’d had decades of hearing, the process of relearning how to hear electronically should be fast, which meant the sounds should start to make sense again fairly quickly, and I would be able to hear things again that I hadn’t heard in decades. He said with confidence that this should happen within a few days to a few weeks, and that it would just keep getting better and better over time.

He told us that though right now I could understand less than a quarter of the words spoken to me, after the surgery that number should eventually go up to 85 or 90 percent, maybe even
more. Also, he said that by three months after the implant is turned on, 85 to 90 percent of people feel that their tinnitus is suppressed.
Just this once,
I thought,
let me please, please, be in the majority
.

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 until 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.