Someone tells me about a doctor in Manhattan who is famous—and famously expensive at $2,500 for just one appointment. Her office is a kind of mansion, with a living room with fine furniture, but what makes me anxious is that everyone in her waiting room has a tube coming out of their nose and taped to their face. Some of them smile at me. She’s funny and raucous, and she has a video camera that shows us both what it looks like when she puts that tube down my own nose. “Oh, my God!” she says. “If I were grading you on having good vocal cords, I would give you a D! Maybe a D-minus.”
She sits me down on her couch. She tells me I must have had Bell’s palsy as a kid. “No, I never did,” I start to say, but she raises her hand. “Yes, you must have,” she says.
I tell her I have asthma, and she laughs. “No, you don’t,” she says. “Who told you that?” When I tell her my pulmonologist, she sighs. “He doesn’t know anything,” she says.
She writes out a special diet that she wants me on. She’s convinced that food is the culprit, that what I have is acid coming up and eating away at my vocal cords. I look at the list of foods I can eat, and I want to hide under the couch. No cheese, no fruit, no pasta. No citrus. No anything. Only water. I tell myself my motto is I will try anything.
After two weeks, I lose twenty pounds, and I am skinny to begin with, but I try to be hopeful and show Jeff how I can slide my jeans right off my hips without even unsnapping them. But at night, I still can’t breathe; I still feel terrible. I go back to this doctor, and this time she tells me that I need to buy a wedge for my bed so I can breathe better and that I need to stop my asthma meds because they are irritating my throat. “How will I breathe?” I ask, and she snaps, “Who’s the doctor here?” She also wants me to have two tests, both of them painful.
“What will the tests show?” I ask.
She shakes her head, her voice as confident and strong as mine is shaky and unsure. “I won’t know until I see the results!”
“But what will you do if you get bad results? More tests? Medicines?”
“Questions, all these questions,” she says.
One of the tests is putting electricity into the muscles of my throat to see if there is nerve damage. A neurologist has to be present when she does it. Another is to swallow a tube into my stomach and keep it there for two days so it can measure whether or not I have acid reflux.
“But what if there is nerve damage?” I ask. “What if I do have acid reflux? What do I do for that?”
She rolls her eyes and then perks up. “I Googled you. You and me, we’re both New York Times bestselling authors.” She holds up a hand, leaves the room, and comes back with a huge stack of paper held together with a rubber band, which she settles on my lap. “This is my new baby,” she says. “I want you to go home, read it, and e-mail me to tell me what you think. It’s all about you, all about having a cough, and maybe Bell’s palsy, too.”
Stunned, I stumble out of her office and onto the street. I drag out my cell and call Jeff, and as soon as I hear his voice, I start to cry, and I tell him what happened. He is silent for only a moment. “Is there a trash can nearby?” he asks. I sob yes. “Okay, I want you to walk over to it and dump in the manuscript.” He waits while asking, “Did you do it yet?” And then I do, and a weight flies off me. “You’re never going back there,” he tells me. “Come home.”
Every night, I cannot breathe. It feels as if someone is strangling me. I wheeze and gasp for air. I’m afraid to call an ER because one of the doctors has told me that ERs don’t know what to do with people like me. They’ll give me a tracheotomy. Another doctor has told me that the best thing for me would be just to pass out from loss of air. “It’ll be like a reboot.”
I don’t like the way that sounds.
I can’t figure out what’s happening, and I’m more and more scared. While I’m used to puzzling out plot problems, this is one I have no idea how to approach. I sit at my writing desk and don’t put down a word. I go out in the world, and I feel unmoored. I see the best doctors in Manhattan, at NYU Medical Center, at Mt. Sinai, at Columbia Presbyterian. But why doesn’t anyone seem to know what I have? Why do they all offer something different?
If traditional medicine can’t help me, can the outliers?
I see an Ayurvedic healer, an Indian woman who drapes herself in fancy silks, hands me herbal pills, and, humming, takes my pulse. “I know exactly what this is,” she says, nodding sympathetically. She tells me there is too much fire in me, and she gives me four bottles of expensive pills to take. She gives me yoga breathing exercises, which are mostly different ways of panting or holding my breath. I go home and take the pills and do the exercises, and I’m no better.
I see an acupuncturist for a year. She’s a young woman who really helped my friend’s mysterious back spasms, so I feel a little hopeful. She pricks me with needles and tells me something is off between my lungs and my stomach, and that makes me feel like it’s a little bit of a diagnosis, so that makes me feel better, too. She has special Chinese herbs made up for me right in Chinatown, but all they do is make me vomit and suffer headaches so terrible that I feel as if my head is ripping apart.
“It takes time,” she soothes me. I give it six months, and then another two, and I’m no better. One day, I walk into her office, sit on her table, and fall apart in tears. She has no idea what is wrong with me, and I become so hysterical, wailing that something is wrong with me and no one knows how to fix it, that she leads me to a private office to gather myself together. I use up all the tissues before I am able to leave, and, feeling ashamed, I never go back.
A psychic tells me it’s my liver. “Forgive yourself, and you’ll heal,” she assures me.
“Forgive myself for what?”
“Only you can know that,” she tells me.
I think about how I grew up in a household where it was safest for me to be quiet because silence didn’t make you the target of rage. It didn’t require you to fix someone else’s problems. I think about how I left home at seventeen, how over time I changed myself to someone my mother and sister viewed skeptically: a woman strong enough to leave her husband when their marriages were unhappy, but they stayed because to do otherwise was too risky; a woman whose decisions mostly garnered disapproval. Did I really need them to forgive my life lived in a better way while theirs remained the same? Shouldn’t they be the ones asking for forgiveness?
I don’t know. And even so, knowing this doesn’t help me feel physically better.
The next doctor I see is skilled in eye movement desensitization and reprocessing (EMDR) tapping. He says, “I know what it is!” And he sends me off for a thyroid biopsy, assuring me that I am lucky because that’s the easiest problem to cure. My thyroid comes back healthy.
So I see a shaman, a young woman who tells me she cured herself of Crohn’s disease. “How?” I want to know. “I worked hard at it,” she says, and part of me feels that what she is really saying is that she worked harder than I am. She lays me on a table and runs her hands over me, but I feel nothing. “I think it’s your kidneys,” she says. When I ask her what I can do about this, she tells me, “You will know when you know.” Then she takes a two-foot-long black crow feather and waves it wildly over me so I can feel the rush of air. “Ha!” she shouts. “You’re going to be fine.”
Except I’m not. And my voice is getting worse, more faint. Which makes me research even more. I spend a fortune on vitamins and special teas, but the only thing that happens is that our bank account slims down considerably, and I throw up two of the teas.
IT’S FOUR YEARS LATER WHEN I STUMBLE INTO A VOICE CENTER. Yep, there are such places, and there are more things that can go wrong with a voice than you can imagine. Nodules on your cords. Tumors. Inability to speak without trembling. I have to fill out a questionnaire before I see any of the doctors. But the questions seem geared to another person. Do I have trouble breathing when I walk? No. When I run? No. Have I tried to talk and then vomited? No.
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p; I see the doctor, who frowns at my answers on the questionnaire. “Hmmm, you don’t fit the protocol,” he says. He scopes my throat and shakes his head. “Yep,” he says. “There’s something wrong with your vocal cords. Were you intubated recently?”
“No,” I say.
“Did you have an infection?”
“Bronchitis,” I say.
“That could be it.”
The doctor shows me the video the scope took, how the membranes don’t open or close properly, how when they smash together, it interferes with my breathing. He suggests Botox injections. “They might work,” he assures me. “Or we could do an operation and insert plastic, but that could make things worse.” He tells me that no matter what I do, it may or may not improve my breathing. “But it will change your voice!” he says happily.
“But I love my voice!” I say. It’s the thing that differentiates me from my mother and my sister, the thing that makes me stand out, that people notice and even approve of.
He shrugs. “Your choice,” he says.
Finally, one day, in the middle of Times Square, I cannot breathe or even talk. I shake. I’m half sure that I am having a heart attack, and I see my life spinning down, as if I am being centrifuged into oblivion.
Lucky for me, I’m with a friend who is married to a psychiatrist. “You’re having a panic attack,” she tells me, and she digs out her cell and calls her husband. When she hangs up, she takes me by the arm. “Come on,” she says. “I’m taking you to the ER.” We’re only a block away, and I am panting, my whole body clammy. When we get there, because she is a doctor’s wife, someone sees me almost immediately (stranger things have never happened!). The doctor hands me a pill.
“What is this?”
“Very low dose of Klonopin,” he says.
“Klonopin!” I think of Stevie Nicks, how addicted she was to Klonopin, how she hallucinated and had dry heaves, and how for her, getting off it, getting unaddicted, was like going cold turkey on smack. “I don’t want that!” I argue.
“It’s such a low dose, we don’t even prescribe it,” he insists, and because I feel myself hyperventilating, I take it.
I wait.
Oh, my God. He’s right.
I don’t feel high. I don’t feel strange. Instead, I can breathe. And I’m calmer. “This worked!” I exclaim. “How did this work?”
“Anxiety,” the ER doctor tells me. “It’s all in your head.”
I’m more than a little irritated because I’ve seen the video scope, and I know it’s not just in my head, but I keep quiet because that Klonopin helped, and I desperately want more. The ER doctor gives me some just for short-term use because, after all, this is a benzo, right? And, unfortunately, he also needs me to go see a speech therapist and a cognitive therapist.
I sigh. Really? “What are they going to do for me?” I ask.
“Anxiety can make physical illness worse. There’s a link,” he tells me.
Because he gave me a prescription, and because I’ll try anything, I go. To my surprise, I love both these therapists. The speech therapist is at Mt. Sinai, and when I tell her that I don’t want anything woo-woo, she calmly hands me scientific papers that show the relationship between certain ways of breathing and mental health, that detail how vocal-cord problems can respond to, if not be cured by, certain breathing exercises. “I’ve seen it,” she tells me. She shows me a totally new way of breathing, which feels awkward at first. You never breathe through your mouth unless you are panting. It’s always through your nose. You sing through straws because it focuses your vocal cords. You blow bubbles into a glass. She has me try every exercise, and I feel like an idiot. I’m sure it’s not working, but she’s grinning at me. “Now speak,” she says. I do, and there is my voice, clear and strong, and I gasp.
“See?” she says. “You sound better already.”
I practice every day. I walk around trying out my new voice. I don’t want to sound raspy anymore, and for the first time in years, I don’t! I correct myself. I speak more loudly. People pay me more attention.
Best of all, the breathing problem that has been starting every day around four o’clock doesn’t happen until ten, and then midnight. I go to the cognitive therapist, and instead of plumbing the depths of my past (do I really need to know how glad I was that my voice was different than my mother and sister’s because they disapproved of me so much?), he gives me concrete things to do. He tells me to wait half an hour after I feel the need to take a Klonopin and see what happens. He tells me to be in the discomfort and see if I can control it. (I can! I do!) I spend one whole session desperate to convince him that I’m not an addict, that I take a tiny dose of the Klonopin, and honest, I swear, I am going to stop.
He nods, calm. “What if the problem doesn’t go away?” he asks casually, the way you might ask someone how the pizza is at a certain restaurant.
I’m too stunned to say anything. And then I find my voice. “But I have to stop taking the drug,” I say. “Don’t I?”
“You’re on a tiny dose,” he says. “You don’t abuse it. You could stay on this dose your whole life and be okay. Why do you have to put judgment on it at all?” Then he tells me not to future-think because there’s no way for me to know what is going to happen. I tell him that right now, I need a quarter of a tiny dose. Maybe in a year I still will. “But maybe you won’t,” he says, and then he tells me, “You’re a novelist; you deal in narrative, in the misbeliefs people have about themselves. Find the narrative here. Find your true voice.”
I BEGIN NOT ONLY TO SPEAK MORE LOUDLY BUT TO SPEAK UP. My voice grows clearer. My relationships with my mother and my sister begin to change, because now, instead of not voicing my displeasure at their scolding in hopes of keeping the peace, I calmly say, “I’m happy to talk with you, but let’s do it when you are not yelling at me.” And to my surprise, it works. They apologize, or they call back, calmer.
And then, as my voice becomes stronger and, with it, my willingness to speak my mind, I start to remember, and those memories unfurl. Growing up, I was always told to be quiet, that my ideas didn’t matter. If I spoke out, I was hit or yelled at, and this went on for so long that I finally gave up defending myself in my family altogether. My mother told me over and over that I was shy, that I would feel better if I stayed in the back of the room in my class. When we were outside, she told me that if I didn’t say anything but just stuck close to her, I would be safer. I believed her. In the ninth grade, my voice began to rasp, to grow hoarse, and at the time I was happy about it because it was an effortless way to be unique. But truthfully, I loved my new voice because when I picked up the phone, for the first time ever, no one on the other end mistook me for my sister or my mom. They always knew immediately that it was me.
Of course, Jeff and I are still researching. When I find out that someone breathes better just by taking a half teaspoon of baking soda in water, I try it, too. Instantly things clear. Who knows why? Maybe I made my body more alkaline, which is optimum for health (and a fringe benefit is that it keeps me from getting colds). Maybe it’s all in my head. It doesn’t matter because I feel better, and I keep doing it. I feel more in control because not only is this something I can do, but I discovered it myself.
Now, with this new sense of myself, I begin experimenting. Telling people calmly what I want, what I think, and to my surprise, I feel stronger. My breathing is better.
And my writing voice begins to change, too. I stop comparing myself to other writers. I take a risk because a story matters to me more than the opinion of those who read it, especially the one person who actually tells me, after reading the fledgling start of a novel, that every writer has an idea they should burn, and this might be mine! “Who would want to read this?” she demands. La, la, la, I don’t listen to her because I am busy listening to myself.
Instead, I take those pages, and I sell them as the basis of a novel. I have no idea what will happen next in the novel I’m writing—I usually outline extensivel
y to prepare for every snag—but this time, it doesn’t matter. This time, it’s exciting to see the novel slowly spin out into what it needs to be.
Just as I am doing with and for myself.
HOW DO WE HEAL, AND WHY? WHY DO SOME PEOPLE GET better when others don’t? Maybe it’s a miracle. Maybe it’s just me, retraining my vocal cords, retraining my thinking. Maybe my problem isn’t with my vocal cords at all, or in my head, or even quantifiable. Maybe I have an energy blockage. Maybe whatever it is will vanish as quickly as it arrived. Disease can be thought of like this: dis ease. We’ve lost the ease of ourselves. Doctors can be thought of as consultants, not experts.
Maybe our bodies, our DNA, always know the right routes to the land of health, but first we have to learn the customs, the language, to broaden ourselves and be able to travel there.
Will I get better totally? Will I find my cure? I don’t know, but I’ve stopped the future-thinking. All I know is, for now, I’m my own advocate for this illness. I speak for myself. I own my voice, and I’m responsible for it growing stronger. For me growing stronger.
Today, I remind myself that for me, sometimes the greatest pleasure of any mystery, whether it’s a book, a play, or real life, is not knowing the answer, being immersed in all the delicious suspense, even as I somehow know that there will be a solution to it all. Instead, I focus on each and every moment of the story. I get more thoughtful about the here and now rather than the what will be. My voice, like my writing, like myself, is ever changing.
Private Investigations Page 20