Binders, Guest Posts, Hearing Loss

Owning—And Rocking—An Invisible Disability

September 10, 2016

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.

 

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Join Lidia Yuknavitch and Jen Pastiloff for their signature “Writing & The Body” Retreat in Portland March 17-19 by clicking photo.

 

 

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Click photo to read People Magazine.

Donate to our scholarship fund: Send someone to a workshop or retreat! Much gratitude for this life-changing act of good karma.

 





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12 Comments

  • Reply jeff lyons September 10, 2016 at 4:56 pm

    Wonderful … and great step forward. It’s all just going to get easier now, and more free. Screw the naysayers and the judgers. They probably don’t read your books anyway. Congratulations… moving on. 🙂

  • Reply Caroline Leavitt September 10, 2016 at 5:10 pm

    Dear Jen, thank you for being my guardian angel and my inspiration and for changing my life. I could never have dared to write this without you. I love you. Caroline Leavitt

    • Reply Kate September 11, 2016 at 8:45 am

      You write beautifully. Thank you for sharing this. You deserve those badass, boss-babe boots!

  • Reply Clea Simon September 10, 2016 at 5:23 pm

    So glad you wrote this! My vision is so bad that I had an eye doctor say “next time Woof Woof ” when I asked him what he meant, he said next time you get a guide dog.Talk about feeling stupid. I think many of us have an invisible disability and you are right it is nothing to feel ashamed about. I am so glad you got those boots, too. You are a bad ass

    • Reply Donna September 11, 2016 at 11:54 am

      I’m sorry your Dr. said that to you. Nobody should make you feel stupid, especially a paid professional. Obviously they should know better but don’t, so what does that make them? 😉

  • Reply Liane September 10, 2016 at 5:45 pm

    Love this, and love you both, Caroline and Jen. Thank you for being vulnerable and brave. I’ve been struggling with hearing loss too. I finally got hearing aids a month ago.

  • Reply Linda Wisniewski September 10, 2016 at 7:17 pm

    Just lovely. And timely. Early this week, my audiologist gave me the brochure with the laughing young blond white people wearing hearing aids. Two weeks till I get mine.
    “…navigating a kind of holiness” – what a great way to look at this. Thank you.

  • Reply Leora Skolkin-Smith September 11, 2016 at 8:26 pm

    Beautifully done and so important for you but also for others. Thank you so much, it was inspirational

  • Reply Susan Henderson September 12, 2016 at 4:36 am

    What a lot to balance at the same time as caring for a brand new baby!

    I also have a hearing impairment and know how it feels to be disoriented at a party or on a conference panel. I once had a very long conversation with a writer about Middle Eastern erotica until she finally started laughing (bless her! most people respond with pity and not laughter) and said, I must have misheard her, she had been talking about middle age!

    Can’t tell you how many interviews people cancelled when they found out about my hearing loss. They didn’t know any other way to deal with it. Anyway, your red cowboy boots just make me smile so hugely. And what great wisdom, even for those of us coming so late to it, that we can just own the truth of who we are without shame. Love you, Caroline. Thank you for this story and for just being in the world.

  • Reply Lauren Rader September 13, 2016 at 7:04 am

    So beautiful. Thank you for sharing. It gives the rest of us more courage. It’s not easy being human.

  • Reply Kate Abbott September 15, 2016 at 12:42 pm

    I just got my hearing aids last week. I put it off for years, until the point that people thought I was being rude when I didn’t turn around when they spoke behind me. I faked hearing, I read lips and said “what” at least four times an hour.

    The things I hear now are amazing. I should have done this years ago.

  • Reply Caroline Leavitt September 16, 2016 at 3:26 pm

    Kate Abbott, I am so glad you got them. It makes all the difference, right?

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