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.