Not Fade Away: A Memoir of Senses Lost and Found (18 page)

W
hen I was twelve, the ophthalmologist told my parents that I would need a guide dog by the time I was twenty. I don’t have a guide dog. I have Olive.

Guide dogs are extremely well-trained animals, carefully chosen after rigorous discipline and testing. I picked Olive because she was the cutest thing I’d ever seen, and if not for Caroline I doubt she’d be housebroken. Guide dogs are also extraordinarily smart and obedient. Olive is very smart, though I think “wily” might be a more apt description.

• • • •

I had gone to California in December of 2010, and Polly had offered to buy me a puppy for the holidays. I was beside myself with excitement. We’re all dog people in my family, and I grew up with a string of golden retrievers: Brandy, Cubbie, Star, Renner. I can remember each of their individual smells and the differences in their eyes, their head size, and their gaits. They all had distinct
personalities and quirks—Cubbie had always been my favorite; not the sharpest, but the most kind and gentle dog I have ever known—and they all shared that perfect dogginess, the pure, clear heart of an animal that just wants to love and be loved. I missed that unconditional, impossibly faithful love. A dog doesn’t care if you’re blind, deaf, unattractive, limbless. They just want to love you and be loved in return.

Even with my wonderful friends and my growing practice, my spin classes and dates, I was lonely. And as I felt my disabilities worsening a new kind of nervousness had crept in. I didn’t like coming home to an empty apartment, but I relished my independence and didn’t want a roommate. A dog was the answer. A perfect, well-trained puppy, my constant companion who would play when I wanted to play, always be by my side, and only bark if there was a stranger approaching or imminent danger.

I already knew exactly what dog I wanted. A few months earlier, I had been walking home from teaching a spin class one afternoon when I saw a woman with two young children, one of whom was holding a leash. I am one of those annoying people who stops to admire every dog, petting and riling them up when I’m sure their owners just want to get moving, but when I looked down and saw this dog, I couldn’t believe it. He looked just like a teddy bear. I grinned at them and they smiled back, and I thought about that dog for about four blocks and then finally said, “I’ve gotta have that dog!” So I turned around and raced back to retrace my steps as fast as I could. When I found them, I breathlessly apologized for stalking them and asked where they had gotten their impossibly cute dog. While the mother told me about the miniature-goldendoodle breeder in Indiana, Teddy—how could his name have been anything else?—greeted me with exactly the type of enthusiasm I hoped he would. I raced home
and spent an hour on the breeder’s website fawning over all of the pictures and carefully reading all of the information they provided about the breed.

This was before New York was crawling with doodles of every kind, so I really knew nothing about them, but I soon learned that they were well behaved, they didn’t shed, and that the mix of the two breeds—half golden retriever, half miniature poodle—was what made their adorably shaggy hair. They reminded me of the Fraggles from
Fraggle Rock,
and I knew that this was the dog for me.

When I decided to get Olive, pretty much everyone told me it was a bad idea. Why didn’t I just get a guide dog? When I told them I didn’t qualify yet, they asked what I would do if I had to get one while I still had Olive. My answer was one I gave, and continue to give, over and over: “I’ll cross that bridge when I get there.” Wouldn’t it be too much for me? How would I train her? Walk her at night? I didn’t care. I was going to make it work.

Caroline and I knew that this was going to be our dog. Well, I knew. At first Caroline had resisted getting a puppy, thinking that it would just be too much work with our busy schedules, and, I’m sure, suspicious of who was going to end up doing the heavy lifting. I assured her that this was not true, and as we schlepped home a doggie playpen, bed, crate, and just about anything else a puppy could ever need or want, I could tell even through her raised eyebrows and occasional eye rolls, as I squealed over yet another adorable little squeaky toy, that she was excited.

When the day finally came to pick Olive up at the airport, there was an epic snowstorm. I was so excited that I could barely sit still in my seat as my friend Jon and I drove to the airport. “Beck, calm down,” he told me, straining to see the road through the storm as I hopped up and down in my seat, asking when we’d
be there, behaving alternately like an annoying child and a woman who was about to have her first baby.

I was desperate to get to her. She was only eight weeks old, and I knew that she had been held for an extended layover because of the storm. By the time her flight landed, she had been crated on the airplane for twelve hours. The instant we got to the airport I jumped out of the car, the wind so strong it slammed the car door shut behind me as I squinted to see the signs through the snow. When we got to the cargo center we saw other people standing in front of a large door, waiting for their dogs, and, even across the large room, I could hear clearly the ceaseless, high-pitched cry of one of the puppies. Somehow I knew that one must be mine. I turned and looked at Jon and he nodded. He knew it, too.

When they finally opened the doors, I rushed in, following the sound of crying; quickly found her crate; and bent down to look at her. A tiny golden ball of fur, yelping her face off. I opened the crate and she raced into my arms, licking my face, so happy to be out of her prison and held, little enough that she fit perfectly in my cupped hands. She was covered with pee and poop, and bits of shredded paper from the crate were stuck all over her. She was like a really stinky, squirming, half-finished papier-mâché project. She was absolutely perfect. My little love nugget. Up until that moment I hadn’t decided on her name, but as soon as I saw her I knew she was Olive. Full name: Olivia Taco Alexander. Forever nickname: Monkey.

We wrapped her in a towel and rushed her back to the car, and I held the reeking bundle under my parka, pressed closed to me as we walked through the bitter wind and snow. I had brought Cheerios for the car ride home, and she wolfed them down, straight from my hand, eating the entire bag as the heater blew on
her, warming her tiny body as it sent her funk wafting through the car. Normally the smell would have had me gagging, but something maternal had kicked in, the same way that parents have no problem changing their own children’s diapers while the smell of other kids’ poop revolts them.

When we got home Caroline was eagerly waiting for our return and held out her arms as soon as we walked through the door to receive our girl. I was all for playing with Olive, but Caroline, of course, insisted after one look at her that we immediately give her a bath. We were not going to have a filthy baby. After we put our bathing suits on, I stepped into the bathtub as Caroline held Olive over the side of the tub in her cupped hands. It was clear that Olive had never seen water like this before and the look of uncertainty and fear in her baby-brown eyes made me love her even more. After Caroline had cleaned her and swaddled her in towels, Olive promptly fell asleep in her arms. Three hours later Caroline was still holding her, staring in wonder down at her perfect monkey face, a darling bundle of golden curls, and I knew I had a walker, trainer, and auntie for life.

I tried to train Olive from the start, really I did. I would put her on a chair next to my bed in her crate with a little towel over it, and I would take out my hearing aids so I couldn’t hear her. But I was dating a guy who would hear her crying and take her out to play. Olive was a quick study and learned right away that her loud yip would get her what she wanted. Not a great start.

Over the next few weeks she was impossible. She chewed and pulled on everything, and I had little cuts all over my hands from all of her nipping. We tried to be sure that she was never left alone in a room, but still she tore through my apartment, leaving everything in her wake in tatters.

My disabilities definitely didn’t help with the training. I often
didn’t notice an accident until I smelled it—or stepped in it. I would stumble over mauled shoes and chewed-up eyeglasses and not notice a mangled part of the rug until my toe got snared in it. Anything I had left on a low surface was gnawed raw by her sharp puppy teeth, and within days my house was a total disaster.

With the gift of Olive, thankfully, Polly had included puppy kindergarten. We were in a class of twelve, though, so with the echo of all of the puppies and their encouraging owners in the large indoor space, I couldn’t hear a thing the instructor said. Caroline was my eyes and ears, but it all moved too fast for her to sign. Despite this, in class Olive was perfect, the example of the group, proudly displaying her good behavior. The teacher, who had noticed Caroline signing to me, stopped to talk and told us that she was legally blind. When I told her that, in addition to being hearing impaired, I was also losing my vision, the look on her face and the question in her eyes was obvious without her having to say it. Why hadn’t I just gotten a guide dog?

Olive’s good behavior, however, was saved for class only, when she had an audience to show off for and consistently firm guidance. At home, she was an unstoppable terror with seemingly boundless energy, and, I admit, spoiled rotten. And, of course, she graduated quickly from the crate to sleeping in the bed with me. I know that there are mommy wars about this: to co-sleep or to sleep train. Olive and I are co-sleepers. My little monkey may be naughty during the day, but she is a dream to sleep with. The softest, warmest, most cuddly teddy bear imaginable.

She is also the perfect alarm clock for someone who can’t see or hear one and who is chronically late. I no longer wake up in a panic, late because my vibrating alarm clock has fallen out of the bed from underneath my pillow,
again,
jumping out and inevitably smashing myself on something as I try to figure out how screwed I
am for time. I am no longer racing around like an idiot, throwing my sparkly aqua retainers in the bathroom sink while simultaneously pulling on mismatched shoes and calling the gym to tell them I’m going to be a little late for my class,
again
. No, now I am awoken hours earlier than I need or would like to be. I have invested in the trustiest and most persistent alarm clock of all time.

First, there is the approach: If we have moved away from one another sometime in the night, here come Monkey’s little paws, figuring out which side of me is most accessible. Then the spoon: She smushes herself into me, her back to my front, as she squirms until I wrap my arm around her and rub and scratch her belly. When I drift off again, I am quickly reminded of my duties with a distinct paw scratch across my arm. The final move, when she has decided it is time to get up: the tongue, warm, wet, and rough. First it makes its way along the circumference of my face, then up and down until I have been completely exfoliated. If this still isn’t enough she often finishes off with the pièce de résistance: the monster wet willy, her tongue reaching enthusiastically into my ear. It is a move that has never failed to send me jumping out of the bed. I’m really not sure who has trained whom more, but I have my suspicions.

Olive is possessive of her place in the bed, too. If Caroline or my mom is sleeping over she’ll sleep between us. Or on top of us. If there is someone else sleeping over she’ll always press herself against my other side and often climb on top of me. Once when a guy I was dating was over and we were fooling around, she came over and sat on him, making it clear that she was, indeed, top dog.

It is amazing how quickly she learned to adapt to my differences. With Caroline, Olive whimpers if she wants her to get up and walk her, but with me she scratches, knowing that I won’t hear a thing. She jumps out of my way if she’s in a spot where I
could trip on her, and walks behind me in the apartment to stay out of harm’s way. If she has a toy that’s in another room or stuck underneath something, she’ll bark incessantly, and if I don’t come in she’ll stand and stare at me, bark, run to where it is, and repeat, for as long as it takes, the whines getting louder and more grating. With me, she always wins. With one stern look from Caroline she skulks off and curls up to pout.

So no, she is not a guide dog. She has chewed, to date, thousands of dollars’ worth of hearing aids. She has ripped up rugs, furniture, and anything else she can get her little paws on. She knows how to walk carefully beside me, and how to behave perfectly on the subway and in public, but she will never be that patient, quiet Lab, standing sentry on the corner, waiting to help a blind owner to cross the street. She is, however, the best present that I have ever gotten and the love of my life.

If I had waited, put off getting a puppy until I needed a guide dog, or listened to the people who told me that it was just too much work, then I would have missed all of this time with my wonderful little girl. She has brought me so much laughter and happiness in the last three years. She is my companion, my baby. We should never put off what we really, really want in life. I know that I can’t; I can feel time ticking away, marked by my diminished vision and hearing, and counterbalancing that with joy is integral to my life. Both personally and professionally, I have seen so many people waiting for the “perfect time” to do something that they want so badly—have a baby, switch jobs, leave a relationship—but the time is now. Why wait for the right time to pursue fulfillment and happiness? Go find it now.

And a note to my future husband, wherever you are: I’m not a big fan of candlelit dinners anymore. But if you propose to me on a sunny day in a field full of puppies, I’m all yours.

M
ost people have a favorite song, favorite food, favorite book, yes. Favorite sound, though? Probably not.

I love the sound of water. There are so many ways that we experience it. I love the sound of water running through a creek and how deep the sound of jumping into a body of water is. The changing sounds of the ebbing and flowing of the ocean’s tide throughout the day, gentle and calm in the early morning as the sun comes up, charging with strength in the afternoon, then lazy and weary in the evening as the sun goes down. I love the sound of a baby happily splashing in water, and how it gurgles out of a faucet before it whirls down the drain. The sound of rain hitting a roof, falling against a car window, pelting an umbrella.

This is one of my great losses. While I can hear things, my discrimination is not strong enough to pick up more subtle sounds. And when I can, amplified by my hearing aids, it’s not genuine sound, not with something as ephemeral as the sound of water. I’m lucky to hear all of the things that I do, but some things, like water, I so long to hear the real, natural sound of.
Waves washing over my feet, Olive enthusiastically lapping up water in that insatiable way that dogs do.

I wonder if I’d love these sounds as much if I hadn’t lost them, but, because I have, I remember to appreciate the other ways that I experience things. Slipping into a hot bath, the steam rising around me as I sink in; walking out into the waves in Hawaii, the combined smell of flowers and suntan lotion mixed with salt. The icy water that I chug after my spin classes.

As much as I miss sounds, though, I have learned to love silence even more.

When I think back on all of the noise I grew up with and how comfortable I was with sound, I am amazed at how significantly my circumstances and feelings about sound have changed. If I had a choice, I’d definitely choose to be deaf rather than blind.

I used to be terribly afraid of the dark and of silence. I remember when my brothers and I would sit under the watchful eyes of our parents during high holiday services. Knowing that we were supposed to be completely silent made it that much more challenging to do so. A simple look from one of my brothers would send me into such hysterics that I’d slide down in my seat and drop my head forward so that my long hair would cover my face, while shoving as much of my fist in my mouth as I could to keep me from making a sound. My failed attempts to remain silent during these times were what I enjoyed most. As a child and a teenager, staying still and keeping quiet were not my strong suits.

Now, if I didn’t have the ability to create silence for myself when I needed to, I’m pretty sure I’d lose my mind. Without the ability to turn off the noise, I think I would end up having a breakdown in the middle of the street amid the horns honking,
the sirens blaring, and all of the other unnecessary sounds. I imagine myself climbing up onto the roof of a cab in traffic and yelling with as much force as I can, “SHUT THE FUCK UUUUUUUUPPPPP!!! EVERYONE! PLEASE! SHUT THE FUCK UP!!!” I’m a bit surprised that I haven’t seen someone do this yet in the dozen years I’ve been living in this insanely noisy city.

My hearing aids often overamplify unwanted sounds and underamplify or distort the most important ones, creating a confusing mash of undifferentiated noise, or making it hard to focus. I am grateful that my hearing aids have enabled me to maintain my independence—without them, my life would be dramatically different and communicating every day would be a tremendous challenge. But it can really be a love/hate thing.

And while they deserve a great deal of recognition, oftentimes there is nothing better than taking them out.

How do I describe the sound of silence? Especially when the meaning of it has evolved for me so considerably over time. I focus so much of my time and energy on living presently and being in the moment, and I encourage the people I work with to do their best to live this way as well. When we spend too much time dwelling on the past or worrying about what may happen in the future, we lose sight of what it means to be alive. Yet, we are constantly bombarded by sound—the TV, music, phones ringing and texts beeping and people talking on them everywhere, horns honking, kids yelling, coffee grinding, etc. All of this makes it that much more difficult to be present without trying to escape or think about being in some other place and time.

Living with Usher syndrome has given me the blessing of silence. Each time I am able to take my hearing aids out and remove myself from the constant noise around me, I look up to
whoever may be listening and think to myself,
Thank you, G-d!
I am not a particularly religious person but if I was, Silence would be the name of my religion.

Imagine yourself sitting in the middle of a Starbucks reading your book, working or really trying to focus on something, or maybe just trying to enjoy whatever coffee concoction you’ve chosen. Now imagine that a group of teenagers sits down at the table next to you, speaking in the loud, self-involved way that we swear we never spoke as teenagers, and you are lucky enough to get to hear them talk about the woes of their love lives or their grades in school. You likely look around to see if there are any free tables that you can move to, but of course, there aren’t, so you silently will these teens to grab their caramel lattes and mocha Frappuccinos and head to their next hangout. Meanwhile, I have been sitting on the opposite side of the teens, removed my hearing aids and have been devoutly practicing my religion of Silence, with no idea or interest in what is going on around me. I am truly able to be with myself wherever I am, and without distraction, I can focus on whatever work I am doing or book I am reading, or simply luxuriate in my silence.

Silence seems to scare a lot of people: We live in a world that never seems to slow down or shut up, with a mind-boggling amount of entertainment and information right at our fingertips, and, if you stop to notice it, we are rarely in total quiet. Many of us have devices that create sound to drown out unwanted noise—noise to block noise. Perhaps silence should scare me, but it doesn’t. Or maybe I’ve just accepted it and can truly appreciate its value.

I’ve also noticed that when I take out my ears, it’s a time when my other senses really come to life. When I turn the water on to wash my face or to take a shower, I have nothing but my sense of
touch and the use of my most central vision to experience the sensation of water—what it feels like against my skin, the temperature of it, and nothing else.

I often hear people say that they want to become more in touch with themselves—to have a stronger mind–body connection. My silence has allowed me to become more attuned to my thoughts, more connected to how I am feeling physically. We all need silence, but first, we need to become comfortable with not having noise and sound, which I think we have become incredibly uncomfortable living without. What does it mean when there is nothing to listen to, when there is nothing to distract yourself with? When there is nothing but you and silence?

People often pay a lot of money for the privilege of quiet. Some go away on weeks-long meditation retreats that are conducted in complete silence. Lucky me, all I have to do is take out my hearing
aids.