By Caroline Leavitt
Shortly after I have my son, I am mysteriously ill with a rare blood disease for almost a year. The meds they give me are toxic, some of the treatments are experimental, (a surgeon uses a robotic arm to glue my veins shut, letting me watch it all on a big screen), and when I finally begin to get better, the doctors tell me there might be lasting side effects. I might bloat out and look obese. (I beach-ball out so my comfort fashion is mumuus, but after a year, I can slide on my skinny jeans again.) I might lose my hair. (Chunks roll off my head and onto my baby, but it sprouts back curlier and stronger than before.) My skin might turn gray. (It does so that people on the subway bluntly stare, but it, too, comes back to normal). And I might lose some hearing and that wouldn’t come back. Sigh. That happens.
At first, because I’m so busy getting well, and taking care of a brand new baby, I don’t notice I lost anything. Not until another six months later, when I’m a giving a reading with two other novelists in front of a packed audience, and one of the other writers nudges me. “They asked you a question,” he says, nodding towards the seats. Panicked, I search for a person standing up, head tilted, waiting. I haven’t heard a question at all, and lucky for me, the person repeats it loudly. Still, I feel my cheeks fire with shame. I can’t look at the other writers, and even though they ask me to lunch afterwards, I make up some excuse.
I tell no one about that day. Instead, I begin to be hyperaware of my hearing and I sink into despair. I’m deeply ashamed. I don’t know anyone who has a hearing issue except for my mother-in-law, who is in her 80s. Comics make fun of hearing loss. People think you are being deliberately stupid.
At first, I am fine one on one with people. But I begin to suffer, to get tired of straining to hear what friends say, and only catching the tail end. You don’t listen, I’m accused. You’re zoning out. I begin to read books about people who have disabilities. A young woman who refuses to tell anyone she’s losing her sight until she falls down a flight of subway stairs. A book about a deaf woman who wishes for a child with “a sweet little limp.” I grieve for who I was, how easy it used to be, but when I think of the future, my mind goes blank.
I console myself, hey, maybe you aren’t that deaf. But I have to test this. I have to be sure. So I engage a friend’s five-year-old in what I call “the whisper game” where we take turns and speak as soft as we can and see if the other person can hear it. I always lose, and the more I lose, the more frightened I become.
I manage to keep it secret for another year. My friends have no idea. I don’t even tell my husband. until one day, when he’s reciting a serial number out to me from across the room, and I keep writing it down wrong, he gets impatient. He snaps at me and I burst into tears.
“I can’t hear!” I cry.
He looks at me, stunned. “Why didn’t you tell me?” he asks gently, but I cry harder. “You need to go to a doctor,” he says.
I don’t want to go. If I don’t go, I can imagine that my hearing will come back. If I do go, I’ll have to deal with the truth, and I might not like it. I put it off, going to get a mammogram instead. I hear my name and I follow a nurse all the way down a corridor until she turns and sees me. “What are you doing here?” she asks. “I didn’t call anybody.” I go home and make an appointment to see an audiologist.
Everyone in the audiologist’s waiting room is old. A woman leans on her walker, wheezing. A guy sits down with a little oxygen tank attached to him.There are magazines in front of me that have young happy people laughing as they run/dance/romance in their hearing aids. You liars, I think. You frauds. You can’t be that happy about a hearing loss. There are celebrities talking about their hearing loss, but they were loud rock and rollers who have a better and cooler excuse than I do for why our ears were fucked.
The audiologist, Dominick Servedio, is kind and funny and I spend twenty minutes explaining to him why I don’t need hearing aids, why I am just doing this for my husband, and why I am sorry to have wasted his time. He considers me quietly. “OK,” he says. “But can we just try something?” He takes out two tiny behind-the-ear hearing aids and tells me to put them on.
“Do I have to?” I say.
“You’re here. You might as well,” he says, as if I am going to humor him.
I put them in. He holds up a mirror so I can see that they’re invisible, but even so, I feel them. I want to jerk them out of my ears. Then he walks outside and said something. “Can’t hear you,” I say, and he nods and came back in. “Didn’t think so. Let’s try that again,” he says. He switches something on, and he goes into the hall and I hear him say, “You can hear now, can’t you,” and I burst into tears because the sound is so sharp, so perfect. “Still don’t want them?” he says.
“I’ll try them,” I say.
A week later, I have a set of hearing aids. As soon as they are in, I walk down the block and come back because there is this odd whooshing. “That’s the wind,” he says. Then I walk again and worry that they might fall out of my ears. Or someone might see them and mock me.
No one thinks anything.
They never, ever fall out.
And I can hear everything.
I feel better, but I still can’t talk about it to anyone. And then I meet this extraordinary woman, Jen Pastiloff. She’s in her 30s, totally gorgeous and she runs yoga writing workshops all over the world. People adore her. And she is profoundly deaf, and she doesn’t let that stop her, and she writes about it. She tells everyone, this is who I am. I am not hiding anything from you because I want you to know me. Last year, she lost her hearing aids and she lamented it on Facebook, and in two days, all of us had donated enough for her to buy a pair because we all love her. I think, if Jen can do this, I can, too. Go forth and be who you are, I tell myself.
I don’t quite know how to do it, though. Not yet. One day, I passed a thrift store and saw a pair of bright red cowboy boots. I knew that only a really badass woman would wear those, and she’d be someone you couldn’t ignore. Someone who would really speak her mind. I walk in and buy them and as soon as I put them on, I feel a flare of courage.
A week later, I wear the boots for a talk I am giving. When I walk in, a woman says, ”Hey, cool boots,” and I feel a glow.
When it comes time for the questions and answers at a reading, I keep it simple. I take a breath. “I blew out some of my hearing,” I say. No one gasps or looks annoyed. “So please ask me your questions in your outdoor voice, otherwise we have to play telephone.” And to my surprise, everyone laughs, and it’s warm laughter this time, “we’re on your side” laughter, and when I am ready to go home, a man touches my arm. “Me, too,” he says quietly, and then he tilts his head and I see his hearing aids. “Thank you. Thank you,” he says.
“No, thank you,” I tell him.
I begin to tell friends. “Come on, you’re joking,” one friend says and I feel my heart crumple into paper. But others say, “I’m glad for you.” I tell my sister Ruth, who says, “People are walking around with all sorts of things and they don’t let it stop them. Why should you let this stop you?” I begin to realize when you tell your truth, when you own who you are, there’s nothing more powerful.
No one can make you feel shame. Only you can do that. And yes, of course I grieve that my hearing is not as good as it used to be, Of course, I wish I didn’t have to wear hearing aids, but I’m also navigating a kind of holiness, a kind of gift. I claim who I am. I don’t hide anymore because I know now that sometimes it is in our most broken selves that we truly connect with ourselves and with others, all of us whispering me, too, me, too, me, too.
Caroline Leavitt is the author of the New York Times Bestsellers Pictures of You and Is This Tomorrow. Her new novel Cruel Beautiful World will be published October 4 by Algonquin books.
Donate to our scholarship fund: Send someone to a workshop or retreat! Much gratitude for this life-changing act of good karma.