Not Fade Away: A Memoir of Senses Lost and Found (19 page)

I
f there is one thing that you absolutely need with a disability like mine, it is resilience. I’m not talking strong will and zest for life, either, but pure physical resilience. When you are going blind and deaf, you are basically an accident waiting to happen. There are countless dishwashers, cabinets, drawers, coffee tables, doors, tree branches, steel poles, etc. that I have smashed into, completely unaware of their existence. My body has become a shrine of scars and bruises: I stopped counting my scars a long time ago, and I can no longer look at a bruise and tell you how I got it. Caroline teases me about being a superhero because of how hard I slam into things at full speed and then just keep going. Because that’s what you do, you just keep going.

If you’ve ever been to New York, you know the horror of the sidewalk cellar doors, metal doors in the ground that open to reveal sharp, steep staircases down to damp, dark basements that all New Yorkers avoid like the plague. Children are warned not to walk on them, lest they somehow open them and fall through. It is a common enough fear that when Samantha fell down one in a
memorable
Sex and the City
episode, there was a shudder felt city-wide.

On Alan’s fortieth birthday, after I was done teaching my last spin class I went to get my hair blown out while Caroline took care of Olive, waiting at my apartment so that we could get ready and go together. Alan and I weren’t dating anymore and hadn’t been for years, but I was still, of course, going to try to look my very best. Even though I was much happier with us just being friends, I had never gotten completely used to the idea of his dating other women. He is more generous in this regard than I am and has always been more than enthusiastic about wanting me to find someone wonderful to share my life with, though neither of us has ever had a relationship with anyone as remotely serious as we did with each other, either before or since. In any case, I still wanted to look great for his party.

It was not to be. By the time I left the salon it had started to rain, and it got heavier as I made my way home. The wind was blowing like crazy and I started to use my umbrella as a cane, rendering the blow-dry useless. The glare of the streetlights reflected back up at me from the puddles of water and blinded me, and I was so intent on trying to focus on what was right in front of me that I didn’t see the open cellar to my side until my leg fell into it, scraping down the metal as it went. I caught myself with my arms just before I fell in completely and dangled there for a moment before I was able to pull myself up. My arms have always been strong—“Michelle Obama arms,” one of my friends calls them—and I was so grateful for them right then. God knows what would have happened if I’d tumbled all the way down.

I climbed out and stumbled the last several blocks home, wiping at the blood that I could feel pouring out of the long cut
on my leg. When I finally limped into the apartment, Caroline, used to but still irritated with my lateness, called out, “Took you long enough,” and then walked into the room and let out a yell. Not much ruffles Caroline, but one look in the mirror told me why. I looked like Carrie, not from
Sex and the City
but from the Stephen King novel; I had managed to smear the blood I had been wiping off of my leg all over my face and hair, and the rain had helped it to seep into my clothes.

“I fell down a cellar,” I told her, and burst into tears. Caroline understood immediately what I was talking about and went right into her calming mode, sitting me down and inspecting my leg, Olive hopping desperately around us. Olive, sadly, is not the kind of dog who will race to my side if I am crying, licking away my tears and trying to comfort me. Instead she’ll seem confused and irritated that she is not getting the undivided attention she is certain she deserves, and will do her best to try and get it by dropping a toy in my lap and using her high-pitched yelp to get me to throw it. For once we ignored her, because a good look at my leg told Caroline that it was cut close to the bone, and that I should go straight to the emergency room, like a normal person. But I’m not.

It hurt like a bitch and was pouring more blood than we would have liked, but this was Alan’s fortieth, and we both knew it was going to take a lot more than that for me to miss celebrating one of my very best friends. We were already running late, and any ER in New York City takes hours and hours. And honestly, what was one more scar? I wore them like battle wounds, and had grown so used to the sight of them that I barely noticed them anymore. So we got the blood off of me and triaged the cut as best we could. Caroline cleaned it as thoroughly as any doctor would have, and then bandaged it up tightly with many layers of gauze and medical tape. I have medical supplies for every
emergency—burns, cuts, you name it, it happens to me on a regular basis.

Because Caroline is Caroline, she didn’t push me to go to the hospital. I’m sure other people would have, and Alan would have had me in the emergency room in five minutes, but she knows that for me, missing things because of my disabilities is unbearable. So she just took care of it, and me, to the best of her ability, and I trusted her to, because Caroline is probably the most competent person I know.

I traded the short dress I was going to wear for a long one and tried my best to fix the thick, snarled mess that was now my hair. We went and I had a great time, despite the deep throbbing in my leg. I never went to the ER. Just one more scar to add to my collection.

I
used to be the most sighted of the blind people, the best-hearing of the deaf. I could help other people find their lost things and interpret for a deaf person in sign language. Over the years, I have always dreaded my hearing and vision assessments. There is only one purpose for them: to chart my decline. I know what the sum-up is going to be: Your hearing is getting worse. Your vision is getting worse. You’re not deaf and blind yet, but you’re a little further along. Now I was in another doctor’s office, for more tests. Tests I was prepared to fail. This time, though, failure wasn’t necessarily a bad thing. This time was different, and I wasn’t alone. Caroline and Alan were there, too. There was no way they would miss this.

• • • •

In January of 2013, I got a message from NYU Langone telling me that I might now qualify as a candidate for a cochlear implant, a surgically implanted electronic device that allows some
people who are deaf or severely hard of hearing to “hear” again, though “experience sound” is probably more accurate, because, being digitized, it sounds vastly different from natural hearing. I was shocked. Twice in the previous five years Alan had persuaded me to go to New York Eye and Ear Infirmary of Mt. Sinai, to the doctor who he had read was the very best, to see if I qualified. I was told both times that I was not a candidate and that, although someday I would be, it was still something way down the road, a far-off idea for when I was much closer to total deafness. But after a couple of friends who also had Usher syndrome type III were implanted at NYU, I had gone to them to find out if I qualified.

It had always been something so distant that I couldn’t ever really imagine it. When I was young the implants weren’t nearly as powerful and advanced as they have become, and they were big, bulky, and hard to wear. It had all seemed so far away, the way that completely losing my vision and hearing had. Now, though, the powers that be were telling me that I might really be deaf, or deaf enough. Of course, though, they would have to do more tests to find out. There are
always
more tests.

If I could have all the days that I’ve spent having my eyes and ears tested back, it would be at least a year, probably more, and still, a part of me has never gotten over the feeling that I can somehow affect the tests’ outcome, that if I just concentrated more, tried harder, gave it my all, I would be able to do better on them.

• • • •

My first reaction to the idea of the implant was not one that I had expected. Alan, my parents, and most everybody else were over-the-moon excited. Alan immediately began researching the
makes and models of implants and made sure his schedule was free for my initial appointments. This was it, my implant! I would have a bionic ear and be able to hear again forever. My hearing would be cured! That had become the general reaction from others, before I even had my first intake appointment. But who could blame them? It sounded so perfect from an outsider’s perspective; who wouldn’t want the chance to hear again?

Caroline, though, immediately understood how I was feeling. She came right over when I told her, made sure she could be there on the day of my first evaluation, took one look at the apprehension on my face, and listened.

I was terrified. First of all, it would mean drilling a hole in my head. Hole. In. My. Head. Second, any natural hearing I had in that ear would likely be wiped out permanently. There was a lot I didn’t know, but I knew that my mother’s voice would never again sound like her voice to me. I also knew that, if I did turn out to be a candidate, it would mean that my disabilities had advanced to a new level. If I was being honest with myself, I recognized that my hearing had gotten worse over the past several years. It’s hard for me to gauge the small changes, the way we don’t notice ourselves aging when we look in the mirror from day to day. I never thought that it had gotten bad enough for me to qualify for a cochlear implant and that it might now be a better option than a hearing aid. While I knew people who had successfully had the surgery and seen their lives improve greatly from it, I also knew others who hated it because, even with time, the hearing sounded so foreign and indecipherable that they never wore it again. The ones who didn’t use it were mostly people I knew who had been deaf or profoundly deaf since birth, and who found the noise so overwhelming and hard to adapt to that they decided to forget hearing altogether and rely completely on sign.
I knew that because I was able to hear and understand authentic sound, my chances were better, but it didn’t lessen my fear.

The day of my first test was freezing cold and windy, and I could barely see as Alan and I made our way down to NYU Langone Medical Center. Caroline, who was now working as a social worker at Bellevue hospital, had raced over during her lunch break to meet us and was waiting for us in the lobby. We made our way upstairs to the waiting room, with Alan talking excitedly about all the cochlear research he’d been doing and the pros and cons of different brands, and Caroline scanning my expression to see how I was doing. When we got to the waiting room, she and I left our mountain of puffy coats and overstuffed backpacks on grown-up chairs next to Alan and sat down at one of the kids’ tables, in chairs that were a suitable size for kindergarteners, mixing and matching Mr. Potato Head’s ears, eyes, and feet. I had just gotten him all dressed up in his top hat and mustache when the audiologist came in and called out my name.

She introduced herself as Laurel and led us down the hall to a standard audiologist’s office, sound booth and all.

“Are you ready to record your next album, Ms. Streisand?” Alan inquired, and I gave him my best singing-diva face.

Laurel gave us the basics on what the surgery involved, the different implants that I could choose from, the statistics on outcomes. She whipped out an ear diagram and pointed to the cochlea, then to the auditory nerve, said the word “electrodes” a few times, and put it away. Or at least that’s what I caught.

“I’m ready to do the exam!” I announced, the science flying by me, even though I knew I should be trying harder to listen. I also knew that Alan and Caroline, my faithful ears, were busy writing everything down and asking the important questions. I never had to worry about that when they were there; Alan
probably already knew as much as the audiologist. I’m convinced that his true calling was to be a doctor or a researcher.

When I went into the booth it was the usual drill. I raised my hand every time I heard a beep. At first I could hear everything, and my hand would fly up proudly. Then, I couldn’t. I could tell by the timing that I was missing a lot. Another test I was going to bomb.

Then it was on to word discrimination, where a prerecorded man with a low-pitched voice says words that I’m supposed to repeat back. I hate this part; it never goes well. Caroline wrote down a few and told me later what the real words were, and it went something like this:

“
Popcorn
.” I heard something that sounded like “mopmop,” so I shrugged my shoulders with a stupid grin on my face at Laurel, who was facing me outside of the booth, and told her that I didn’t know.

“
Toothbrush.
”

“Toothbrush!”

“
Mailman.
”

“Handheld!”

“
Hot dog.
”

“Hot diggity dog!”

Then I was really unable to hear them and started guessing. Caroline wrote them down, because that’s what she does, but also because she knew that they would make me laugh later, even though I was trying hard not to cry now.

“Um, ‘ostrich’ or ‘tobacco.’

“‘Loose,’ ‘goose,’ ‘moose’?

“‘Fish,’ ‘dish,’ ‘wish’?

“That sounded like ‘fog’ or ‘blanket.’

“‘Spaghetti’ or ‘porcupine’?

“Hmm, that sounds like ‘fuck,’ but I don’t think that’s the word you’re giving me. Sorry for the language.”

When I came out I tried to smile for Alan and Caroline, but they weren’t fooled. They knew I’d be crying when we left. It’s harder with the prerecorded voice, which I hadn’t been tested with in a long time—it’s often the audiologist who does it, which is easier to understand—and I knew that I hadn’t done well. My stomach curled up as I waited to hear the results.

The last time, with the audiologist reading, I had scored a 74 percent in my left ear and 44 in my right. Today, Laurel told me, my left ear had 40 percent discrimination and the right just 26 percent. This meant, she explained, that I was likely a candidate for an implant. Alan looked thrilled; clearly, doing badly was a good thing. Laurel handed us marketing materials from all three cochlear implant device companies, full of photographs of smiling children and families, along with a ten-page questionnaire for me to fill out. Of course, to add insult to injury, the questionnaire was in very small print. Awesome.

When we got home, Alan started reading me the questions, but after the first couple of pages I was so tired and overwhelmed by the day that I could barely concentrate. I knew that they could answer most of them for me anyway, so I curled up on the couch with Olive against my belly and let them do it. This is what it means to have devoted friends. They will fill out a ten-page questionnaire in teeny tiny print for you, and they will know the answers to questions like:

Does your tinnitus cause problems in your family?

On a scale from 1 to 100 does your tinnitus do this or that?

I must have fallen asleep for a little while, because I awoke to them laughing, so bored that they had started making up their own questions.

Do you find your tinnitus hogs the covers at night?

Does your tinnitus constantly leave the toilet seat up?

Does your tinnitus drink milk straight from the carton?

• • • •

A week later I had a CAT scan, and then I got the call a few weeks after that: I now qualified for a cochlear
implant.