Not Fade Away: A Memoir of Senses Lost and Found (14 page)

C
aroline and I balance each other out. She is perfectly organized and diligent. I can be both of those things, but I’m also sillier, dreamier, more prone to dancing down the street spontaneously. I bring out her inner goofball, who is always just dying to get out, and she’s taught me that keeping myself organized is imperative to making my life easier—and to getting places on time, which has never been my strong suit. When it can take hours to find your keys, it is idiotic not to train yourself to put them in exactly the same place
every time
.

When I go to her house, she carefully puts my stuff on a table that is just for me. When I start to say, “Caroline, where—” I can’t even get the words out before she cuts me off with a “Before you ask for anything, confer with the table.” She has a caddy for me in her bathroom with contact solution, eye makeup remover, a toothbrush and toothpaste, a brush—all the things I could possibly need. She has extra cases for my hearing aids and all three kinds of batteries for them. She even carries around extra batteries in case I run out. Everybody should have a Caroline: organizer
of life, cleaner-upper of broken glass, tactile-signer, and sweet, funny bestie. She even tweezes my eyebrows for me and finds other errant hairs I have a hard time seeing. This is exceedingly important. I cannot have granny whiskers, and she keeps an eye out for them. She can be a little anal, though. Sometimes I think someone watching us would think that we were reenacting a scene from
The Odd Couple
. Like with the nail polish.

One afternoon we were in my apartment, and I was hunting around for a bottle of red nail polish. Everyone in New York gets manicures and pedicures—they’re a staple, and there’s practically a salon on every block—but I like to do my own. It relaxes me. I’m terrible at sitting still and it gives my hands something to do and keeps me from biting my nails. Also, I want to be able to paint them while I still can (though I’m pretty sure I’m getting worse at it).

So while I was hunting for my nail polish she started to look, too, and found me one. Then another, and another, and then it was on, as she single-mindedly searched my apartment for what turned out to be a really embarrassing number of nail polishes in what could be described as pretty much the exact same shade of red.

“I always think I’ve lost one,” I said in my defense, “and then I need a new one.” Caroline raised her eyebrows skeptically. “I’m mostly blind, you know,” I continued, determined not to look like a hoarder. But I could see it in her eyes. She continued gathering them up until she had them all in one big snarky pile on the floor and then slowly counted, out loud, as she put them neatly into a big Ziploc baggie. The final count (according to her; like I was going to count) was thirty-two.

“What if I can’t find the bag?” I asked, just to be obnoxious. She showed me the drawer where she was putting the nail polish.
“The bag lives here,” she told me with finality. I think I was supposed to be learning a lesson, but what I was really thinking was that I’m so glad to have a best friend like Caroline who, even if she is a little annoying about it, would take care of shit like this for me. Someone who would always do things to make my life easier when I needed her to, and, even more important, taught me to do them for
myself.

W
hen I had finished my training at the American Institute for Psychoanalysis, where I received my certification in psychodynamic psychotherapy, I decided that I was ready to start my own practice. I knew that it would mean being completely self-reliant professionally and that nobody could hold me back except myself. I also knew that I faced extra challenges because of my disabilities, but I couldn’t let that stop me.

My very first patient was a woman I’d seen at the Renfrew Center, an eating disorder recovery program that I had worked at briefly, who came to me as soon as she was discharged. I had sectioned off a part of my apartment for an office, and before she came I made sure that it was clean and welcoming, scanning again and again in case I had missed anything. After I began seeing her, word spread and referrals came in, and so I began by specializing in young women with eating disorders, which, with my experience, was a great way to start.

Working with young women, I was constantly reminded of why these issues plague us. It’s not about the food. For many, it’s
about being able to control something, when there is so much that is out of our control. While other people’s stories may not seem as dramatic as mine—I have no control over losing two senses that most would consider vital to living a full and happy life—every one of us lives in a world that is full of things that we cannot change, and it can make us feel so strong and empowered to be able to keep our outside looking good when inside we can feel so powerless.

We are also constantly exposed to totally unrealistic messages and beliefs about what a woman should look like, so it’s no wonder so many of us fall prey to them. When I walk down the street now, I have hearing aids, and often a cane, and it took a long time for me to work through feeling self-conscious about it. It’s hard for me to imagine that a guy is going to check out a girl with a cane and think,
Damn, she’s hot,
no matter how good I look, when there are thousands of beautiful women in New York City with no cane or hearing aids and a perfect exterior that hides whatever’s underneath. I know I can’t worry about that, though, because where is it going to get me, except to make me feel bad and to keep me from using the tools at my disposal to make my life easier and more navigable? I also have to remember that we all have our shit, and it’s going to come out and show itself eventually, even if mine is out there earlier than most.

So, it’s not about the food. When I finally realized that, it truly was a revelation. It doesn’t mean that I don’t sometimes feel gross after eating a huge meal or that I don’t mind when I look in the mirror and see that I’ve gained a few pounds, but I can honestly say that I worked mightily to have what is now a healthy relationship with, and appreciation for, both food and exercise.

When I finish a tough workout, I feel as though I could conquer anything. I love food, and I can now fully give myself over
to the joy and nourishment that I get from it. My eating disorder no longer has control of me.

• • • •

With two of my senses vastly diminished, I cherish the others, and now, the tactile delight of food and eating is one of my greatest pleasures. I think I may actually love food more than anyone I’ve ever met. I’m sure other people think that they do, but I’m pretty sure that this is one that I win. I love to really taste and savor the food I eat, and I am the best dinner guest, because I will compliment the food with every bite if I love it. I can’t help myself, though I try to wait until I’m done chewing my bite.

Food is a pleasure that is completely unreliant on sight and sound: I love the smoothness of sweet mint ice cream, cool and creamy on my tongue, and the delightful interruption of a tiny pop of peppermint crunch, the little explosion of flavor as it gives under my teeth. Who decided that peppermint-stick ice cream should be a mostly seasonal delight? It is the most delicious and refreshing of ice cream flavors, and if you’re a true believer, nothing else is quite the same.

I love the toothiness of a kale salad, tangy with vinaigrette and peppered with crunchy bits of almond and a sweet note of apple, some avocado thrown in there for a contrasting, smooth richness. And nothing beats my mother’s famous spaghetti sauce. When I walk into the kitchen and it’s full of the smell of warm tomatoes, onions, and oregano, my mouth starts watering as much as Olive’s, and I’ll eat it over my mom’s shoulder, right from the pot. Same with my dad’s applesauce. The first bite is like a thousand sweet apples bursting in my mouth at once. Soft black licorice? Hand over the whole bag.

My sense of taste, along with my sense of smell and texture, has gotten so powerful that there are many things that I can’t eat that I used to. Meat in any form completely grosses me out, and while I know that fish is something that I should eat, the smell of it cooking makes me gag. Spicy foods are too much for me, and any strong cheeses. If I don’t like something, I can’t even fake it; it immediately shows on my face.

All of my senses are amplified even more if I have my eyes closed. When Caroline and I treat ourselves to ice cream or frozen yogurt, chock-full of toppings, we eat it with our eyes closed. I have often thought that
The Blind Diet
would be a very marketable book. You tend to slow down, taste things more, savor them. I find it helps me to stop eating not by judging the amount in my bowl, but by noticing when the food stops tasting so delicious and I’m no longer hungry. Not that I always stop there, especially not when it comes to something like ice cream, but I try. It adds so much to the appreciation of my food, and I think anyone’s senses are heightened by the loss, voluntary or not, of another one, though I’m probably more adept than most at eating without seeing much. I still knock over glasses all the time, but in the pitch dark, I win every time. Alan and I once went to a dinner for the Foundation Fighting Blindness that was done completely in the dark, and while he struggled to get his food from plate to mouth, finally giving up and holding his meat by the bone to eat it, I managed to steal most of his mashed potatoes, which were even more delicious in the dark.

• • • •

My practice grew quickly, and I soon began seeing deaf patients, who were relieved to find a therapist who understood what it
meant to be deaf but also knew that being deaf did not define them. I have a deaf couple who come in and fight in my office, their hands moving so fast and faces and expressions so animated and changing so quickly that I often have to slow them down, unable to keep up with the war zone of flying hands.

I have another patient, a composer who is losing his hearing. I try to imagine what that is like, to be going deaf when your whole world is oriented around your hearing. I teach him sign while we talk, though for him, I know it won’t be enough. He isn’t just losing his hearing; he’s losing his passion, his life’s work.

I have patients from India, Colombia, and Singapore, which, as one can imagine, presents its own difficulties. I need to be open and direct about my hearing loss with them, and they are usually more than willing to wear the microphone that works with my hearing aids. I actually think this gives them a sense of empowerment. I cannot practice the way that many of the analysts I was trained under do, which is to not share any information about themselves with patients. That is not a possibility for me.

My practice has to be dynamic, and it has to be a two-way relationship, because if I am not open about my disabilities, I can’t do my job, which is to focus on my patients entirely and be totally present for them. People like to feel needed, and my patients have been happy to accommodate me.

• • • •

I love hearing other people’s stories, and being able to focus entirely on someone else’s needs and what I can do to help them. I have a true understanding of what it means to take each day as
it comes, with its joys and sorrows and complications, and to make the most of it. It sounds like something written on a greeting card, but it’s true. If I can help my patients to do that, to be truly present in their lives, then I believe my work is worthwhile.

I
n college, when I experienced my first dramatic loss of hearing and the tinnitus started, I couldn’t stand to have my hearing aids out, because it made the tinnitus worse. I remember learning about amputees experiencing a “phantom limb”—the sensation that an amputated or missing limb is still attached and moving appropriately with other body parts—and that people who experience it often feel as though the missing limb or body part is distorted or in a painful position. That was as close as I could come to a comparison; my ear couldn’t hear, but my brain believed it could and stuck me with the most annoying, painful sound it could find.

A few years after getting my masters’ and starting my psychotherapy practice, I was living alone in an alcove studio apartment in New York City. By that time, I had acclimated considerably to my hearing loss. So much so in fact that I looked forward to going home so that I could “take my ears out.” As difficult as it is to be hearing impaired, there is nothing better than turning off all of the noise and unnecessary sounds around me. Taking my
hearing aids out allows me to focus without distraction, or to relax completely, anywhere I am. And there are no babies who sleep as soundly as I do. It is a gift. Not one I would have asked for, but a gift nonetheless.

Then suddenly, all of that changed. Instead of looking forward to going home so that I could take my ears out, I began to dread it. At first I didn’t understand that I was beginning to experience a different form of tinnitus. I’d grown so used to the ringing that I mostly just tuned it out. I’m not sure whether this was just my hearing loss progressing further or simply a side effect of the loss I’d been enduring over time, but there was a yearlong period where I experienced serious auditory hallucinations, some of which would last for a week or two, others for several months at a time. All of them started at night, when all I wanted was to be sleeping in my usual uninterrupted bliss.

The midnight jackhammer was the earliest sound I can remember, waking me in the middle of the night, practically rattling my windows. How could workers possibly be jackhammering at this hour?
This city is too fucking much for me,
I thought as I threw my covers off, grumbling to myself about needing to move back to California immediately, and stormed over to the window. With all of the irritation I could muster, I lifted the window open in one quick jolt and leaned out, looking both ways. Was this a joke? There were no workers and no jackhammers on the street—just the steady flow of traffic moving through the light and onto the 59th Street Bridge.

Then the sounds moved indoors and got eerier. Just the kind of stuff a woman living alone wants to hear.

I was lying in my bed one night early in the fall, and the weather was still fairly warm, so I often slept with my window open a little to feel the slow, cool breeze from outside. As I drifted off,
I was quickly startled awake by the sound of knocking. At first I thought it was something outside and closed the window, but then it seemed that it was coming through the wall behind my bed that I shared with my neighbors. I didn’t know the layout of their apartment or whether their bed was propped up against the same wall as mine was, so I lay there in the dark imagining every possible scenario in which mysterious knocking played itself out. It sounded so real to me that it felt as though I could hear the reverberation of each knock against my eardrum. Initially, I ignored it and assumed it was not intended for me. But the knocking continued. I decided to knock back on the wall. The neighbors were a young engaged couple who had recently moved in—maybe they were just being silly. It’s sort of funny to be so physically close to your neighbors, separated by merely a wall. So strange in the city, where you can live within a couple of feet of people and not even know their names. I knocked back with reluctance. I heard another pattern of knocks so I decided to knock back again, with a bit more confidence and enthusiasm.

Then I had a sudden thought that perhaps it wasn’t knocking at all, but the sound of their headboard hitting the wall. That scenario made a lot more sense. I quickly pulled the covers over my head to hide, humiliated. My neighbors were surely getting it on and I seemed like I was trying to participate.

As the night grew later and then earlier into the morning, I started to doubt this theory. Not even twentysomething soon-to-be-marrieds could keep it up for this long! I took a few more guesses about where the knocking was coming from. Plucking the sharpest knife that I could out of my eight-year-old Bed Bath and Beyond knife block, which was probably too dull to cut an apple with, I crept to the door and looked through the keyhole. Nothing. I gripped the handle of the knife more firmly,
unlocked my door as quietly as I could, and pulled it open.
En garde!
Still nothing. I looked left and right before stepping out the door to look down the hallway where it turned. Not a soul. After three or four nights of this, I finally fell asleep out of sheer exhaustion, still not realizing that it was all in my head.

The haunting continued. If I had to guess, I would have said that the person walking up the stairs was an adult. Although the footsteps weren’t particularly loud or heavy, the stairs were desperately creaky. Each step sounded as though the worn wooden step beneath it could go at any second. But what stairs? I would run out to the hallway, but it was an elevator building, and there was no one on the fire escape stairs. Then what could it be? Again, mystified, I returned to my apartment, trying to sleep through the creaks but unable to silence the part of me that was well aware that this noise was a signal in every horror movie that something is about to jump out and
kill
.

The most frightening sound came last. A woman’s scream. Like the other sounds, the scream woke me suddenly in the middle of the night. It was terrified and piercing, and sent an echoing chill through my entire body. Like all of the other sounds, I experienced the screams as though they had physically penetrated my eardrums. My visceral response was to curl into a ball and pull the covers over my head to hide. While squeezing my eyes shut, I put my hands over my ears, trying desperately to block out the noise, wondering if I should call the police, the doorman, run into the hallway,
something
. But that only seemed to make the noise louder, and it suddenly dawned on me that it was louder because it was
coming from inside my head!
A talk with the audiologist introduced me to the term “head noise,” a reproduced sound that my brain was creating, and just knowing this seemed to quiet it down a bit.

I still get them sometimes, but they’ve become more benign. I’ll hear crickets sometimes, whole concerts of them, smack in the middle of my New York City apartment. Or a snap, crackle, pop, reminiscent of one of my favorite childhood breakfast cereals. Though the tinnitus, of course, has persisted unabated, it’s a lot easier to block out than the sound of a woman screaming bloody
murder.