Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You

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Overview

For twenty-two years, Katherine Bouton had a secret that grew harder to keep every day. An editor at The New York Times, at daily editorial meetings she couldn’t hear what her colleagues were saying. She had gone profoundly deaf in her left ear; her right was getting worse. As she once put it, she was “the kind of person who might have used an ear trumpet in the nineteenth century.”

Audiologists agree that we’re experiencing a national epidemic of hearing impairment. At present,...

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Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You

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Overview

For twenty-two years, Katherine Bouton had a secret that grew harder to keep every day. An editor at The New York Times, at daily editorial meetings she couldn’t hear what her colleagues were saying. She had gone profoundly deaf in her left ear; her right was getting worse. As she once put it, she was “the kind of person who might have used an ear trumpet in the nineteenth century.”

Audiologists agree that we’re experiencing a national epidemic of hearing impairment. At present, 50 million Americans suffer some degree of hearing loss—17 percent of the population. And hearing loss is not exclusively a product of growing old. The usual onset is between the ages of nineteen and forty-four, and in many cases the cause is unknown.

Shouting Wont Help is a deftly written, deeply felt look at a widespread and misunderstood phenomenon. In the style of Jerome Groopman and Atul Gawande, and using her experience as a guide, Bouton examines the problem personally, psychologically, and physiologically. She speaks with doctors, audiologists, and neurobiologists, and with a variety of people afflicted with midlife hearing loss, braiding their stories with her own to illuminate the startling effects of the condition.

The result is a surprisingly engaging account of what it’s like to live with an invisible disability—and a robust prescription for our nation’s increasing problem with deafness.

A Kirkus Reviews Best Nonfiction Book of 2013

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Editorial Reviews

The New York Times Book Review - Seth S. Horowitz
A decline in auditory function is almost a default feature of aging, with over two-thirds of adults 70 or older afflicted by at least some hearing loss. But [Bouton] is one of the millions of people whose hearing began failing when she was much younger, and she masterfully depicts its effects on her personal and professional life…Her interviews with other hearing-impaired people offer fascinating insights into the degree that hearing loss affects individuals, and she unsparingly examines why many of her subjects dealt with their deafness better than she did…
The Washington Post - John Christiansen
…a heartfelt, evocative account…[Bouton's] personal experiences of embarrassment, denial, anger, social isolation, stress and vanity, especially as they contribute to a years-long delay in the use of a hearing aid and, later, a cochlear implant and subsequent therapy, are discussed with admirable honesty and candor.
Publishers Weekly
Though she’s never been able to pinpoint the cause of her affliction, former New York Times senior editor Bouton remembers the day she began to lose her hearing and suddenly found herself among the ranks of the estimated 275 million people around the world with some type of hearing impairment. She recounts her story and expands it to include the experiences of others (each chapter closes with a profile of a person with a hearing disability, including a British opera singer, a psychoanalyst, and a professor), crafting a study rich in detail and broad in scope that touches on the intricacies of cochlear implants and the increasing amount of ambient noise in our society, as well as the shame, frustration, and guilt the hearing impaired face in the workplace and in private conversation. This 360 degree approach to the topic makes this more than just a memoir; it’s a unique method of storytelling that educates, engages, and occasionally enrages the reader, who will come away with a new understanding of the widespread and often puzzling topic of hearing loss and how it can be overcome, or at least managed. Agent: Jim Levine, Levine Greenberg Literary Agency Inc. (Feb. 19)
From the Publisher
“Poignant, enlightening . . . a relatable, inspiring narrative of taking control, going public and finding comfort and empowerment in connecting with others facing similar difficulties. A well-written, powerful book.” —Kirkus Reviews (starred)

“[A] compelling memoir . . . Employing an engaging and even entertaining writing style, Bouton discusses the causes of hearing  loss . . . An important and remarkable book.” —Booklist (starred)

Shouting Won’t Help is a fascinating and frequently moving exploration of the hearing loss that strikes so many of us and those we love. The book is filled with enlightening personal observations, wise advice, and answers to frequently asked questions. If you’ve ever said ‘What?,’ gotten annoyed at those who do, had a miserable experience at an expensive but cacophonous restaurant, or wondered which is most dangerous to your health—sex, drugs, or rock and roll—this book is for you.” —Steven Pinker, Harvard College Professor of Psychology at Harvard University and author of The Language Instinct

“The world is getting noisier, but fortunately we have Katherine Bouton, whose talent for listening remains undiminished by her hearing loss. Her book is both a moving memoir and an indispensable resource for everyone who cares about their ears.” —Deborah Solomon, author of Utopia Parkway

“Katherine Bouton’s book is not only entertaining—it is profoundly necessary. As the daughter of a hearing-impaired parent, I found that it offered me insight, inspired compassion, and made me feel less alone. I can’t wait to share it with my mom!” —Peggy Orenstein, author of Cinderella Ate My Daughter

“Katherine Bouton offers a wealth of information and insight about a frustrating and isolating condition. Her book inspires those who suffer from hearing loss and educates those who wish to understand its vicissitudes.” —Jerome Groopman, Recanati Professor of Medicine at Harvard Medical School and staff writer for The New Yorker

“Katherine Bouton makes a brave personal contribution by underscoring the emotional harm deafness can cause. Open, frank, wise, up-to-date, and consistently informative, Shouting Won’t Help will be of immense use to anyone dealing with hearing loss.” —Peter D. Kramer, Clinical Professor of Psychiatry and Human Behavior at Brown University and author of Against Depression

From The Critics

“Poignant, enlightening . . . a relatable, inspiring narrative of taking control, going public and finding comfort and empowerment in connecting with others facing similar difficulties. A well-written, powerful book.” —Kirkus Reviews (starred)

“[A] compelling memoir . . . Employing an engaging and even entertaining writing style, Bouton discusses the causes of hearing  loss . . . An important and remarkable book.” —Booklist (starred)

Shouting Won’t Help is a fascinating and frequently moving exploration of the hearing loss that strikes so many of us and those we love. The book is filled with enlightening personal observations, wise advice, and answers to frequently asked questions. If you’ve ever said ‘What?,’ gotten annoyed at those who do, had a miserable experience at an expensive but cacophonous restaurant, or wondered which is most dangerous to your health—sex, drugs, or rock and roll—this book is for you.” —Steven Pinker, Harvard College Professor of Psychology at Harvard University and author of The Language Instinct

“The world is getting noisier, but fortunately we have Katherine Bouton, whose talent for listening remains undiminished by her hearing loss. Her book is both a moving memoir and an indispensable resource for everyone who cares about their ears.” —Deborah Solomon, author of Utopia Parkway

“Katherine Bouton’s book is not only entertaining—it is profoundly necessary. As the daughter of a hearing-impaired parent, I found that it offered me insight, inspired compassion, and made me feel less alone. I can’t wait to share it with my mom!” —Peggy Orenstein, author of Cinderella Ate My Daughter

“Katherine Bouton offers a wealth of information and insight about a frustrating and isolating condition. Her book inspires those who suffer from hearing loss and educates those who wish to understand its vicissitudes.” —Jerome Groopman, Recanati Professor of Medicine at Harvard Medical School and staff writer for The New Yorker

“Katherine Bouton makes a brave personal contribution by underscoring the emotional harm deafness can cause. Open, frank, wise, up-to-date, and consistently informative, Shouting Won’t Help will be of immense use to anyone dealing with hearing loss.” —Peter D. Kramer, Clinical Professor of Psychiatry and Human Behavior at Brown University and author of Against Depression

Library Journal
Why do we lose our hearing? Although this is a simple question, Bouton (former senior editor, New York Times) discovered that the answer is complicated. This book is borne out of Bouton's desire to find out why she started losing her hearing in her thirties; the progressive loss eventually forced her into retirement from a successful job with the Times. The book is well researched, with chapters focusing solely on hearing aids, cochlear implants, and the science of hearing. She explores new treatments and research and even analyzes the effects of noise on society. The most fascinating sections are the "Voices" at the end of each chapter, where Bouton details the experiences of fellow deaf people. Many of them are involved in the theater, as conductors or opera singers, and their careers were affected drastically by their loss. Bouton also relates how she slowly lost her hearing and came to terms with her disability, a process that took her years. VERDICT Both deaf and hearing readers will find Bouton's research interesting and informative, though they may disagree with her conclusions.—Caitlin Kenney, Niagara Falls P.L., NY
Kirkus Reviews
A former New York Times senior editor's poignant, enlightening memoir of hearing loss. Hearing impairment is a widespread, and widely misunderstood, condition that afflicts nearly 50 million Americans. With ever-specialized medical technology and increasingly precise diagnostic tools, treatment options are better than ever, but the nature of damage to the inner ear remains opaque. In addition, in a culture dominated by oral communication, a persistent stigma remains attached to going deaf and to its prosthetic aids. Where hearing loss was once associated with the elderly, statistics suggest that an increasing number of young people put themselves at risk for early damage by exposure to overloud music, sports arenas, even subway stations. Bouton, whose own hearing loss has no known cause, details her struggle to accept the disability and to navigate the complex physical and emotional changes that accompany the inability to hear well. Vanity considerations aside--most hearing aids have an exterior element, drawing visibility to an otherwise invisible condition--the decision to wear a hearing aid or to have surgery to install a cochlear implant has financial and psychological ramifications. Most insurance companies don't cover all costs related to hearing loss, and often such devices don't work right away or even at all. Vertigo, tinnitus and depression are also common side effects of hearing loss or surgery, and the small adjustments and audio therapy required to get devices to work can take years. By interspersing her story with those of many others--both those suffering with hearing loss and the medical experts working to find a cure--the author provides a relatable, inspiring narrative of taking control, going public and finding comfort and empowerment in connecting with others facing similar difficulties. A well-written, powerful book.
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Product Details

  • ISBN-13: 9780374263041
  • Publisher: Farrar, Straus and Giroux
  • Publication date: 2/19/2013
  • Pages: 288
  • Sales rank: 245,938
  • Product dimensions: 6.38 (w) x 9.12 (h) x 1.00 (d)

Meet the Author

Katherine Bouton

Katherine Bouton is a former editor at The New York Times, where she worked for The New York Times Magazine and The New York Times Book Review, as well as the daily Science and Culture desks. Her nonfiction has appeared in The New Yorker, The New York Times Magazine, and many other magazines and reviews. She is currently a regular reviewer and contributor to Tuesday’s Science Times section. She lives in New York City with her husband, Daniel Menaker. They have two grown children.

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Read an Excerpt

Shouting Won't Help

Why I--and 50 Million Other Americans--Can't Hear You
By Katherine Bouton

Sarah Crichton Books

Copyright © 2013 Katherine Bouton
All right reserved.

ISBN: 9780374263041

ONE
 
Losing It
 
 
I lost my hearing one early spring day in 1978. I was at home, writing about a trip I had made to Turkey the summer before. I had been part of an archaeological dig in southwestern Turkey, the site of a former Classical Greek and then Byzantine city. I hoped to write about the experience in a feature article for The New Yorker. Although I had worked at the magazine for eight years, since graduating from college, I didn’t discuss the story with an editor or ask for an assignment—only for a three-month unpaid leave. I don’t think a man would have been as reticent, or a young woman today. But it was 1977.
The dig was an adventure and the archaeologist in charge a vivid and controversial character. After I got home, I started writing. I was excited, happy, and slightly anxious, the way you are when you’re on the brink of something that could change your life.
At some point in the morning, the phone rang and I picked it up. “Hello?” I said. “Hello????” Why couldn’t I hear the caller? I tried the other ear, the right. It worked just fine.
I went over the explanations that come to anyone with sudden hearing loss. Maybe I had wax in my ear, an infection; had I forgotten some loud noise? Once before, I had lost my hearing for almost a day after being at a loud rock concert (The Who, Madison Square Garden, March 1976). It came back on its own. So would this, I thought. Or a doctor would fix it.
As the day went on, I was dizzy and my ear was crackling. Loud noises were uncomfortably amplified and startling. I went outside to clear my head, but a city bus going by whooshed its air brakes and the sound was so loud the impact felt almost physical. At home, the ring of the telephone was high-pitched and shrill; my hairbrush made a jangly clatter when I dropped it. In the evening, my soon-to-be husband, Dan, came home. He puttered around doing ordinary things—rustling paper, setting a dish on a counter, watching TV, scraping a chair on the floor. Nothing sounded like what it was, and everything sounded painfully loud.
Eventually, over the next few weeks, the crackling receded and the sensitivity stabilized. But I never regained my hearing. A doctor couldn’t fix it. A doctor couldn’t even figure out what had caused it. It would continue to deteriorate in fits and starts, as unexpectedly and mysteriously as that first time, with increasing frequency. Thirty years later, I was profoundly deaf in my left ear and headed in that direction in my right.
*   *   *
There are many things I have failed to hear, but one stands out from the others. My father died in 2010. I had been with him a lot during his illness, but I wasn’t there when he went into the final stages of dying. The last words he said to me were on the phone. I didn’t hear them.
My father was six foot five, 230 pounds. He wore a size 15 shoe. He’d been in the Navy in World War II and Korea, and was always trying to persuade my mother to join him on a cruise around the world—the sea was the only place big enough for him. During my childhood, he traveled every week, as a salesman. Like Willy Loman, sample cases in hand, he called on Macy’s and Hutzler’s, Abraham & Straus and Bloomingdale’s, selling Arrow shirts, taking buyers out to dinner and drinks. As Willy says, the success of a salesman depends on being liked. My father was successful.
He was also fiercely independent once he retired. He and my mother lived at home well into their eighties, and his job, in retirement, was taking care of her. As he eventually accepted the need for care, the house filled up with nurse’s aides and hospice workers, visiting nurses and social workers. He managed to find humor in the situation, joking as he answered the phone, “Bouton Nursing Home.”
He didn’t like the phone. If he answered when you called, you were lucky to get three sentences: “Hey! How you? Your mother’s right here…” The sicker he got, the weaker his voice got and the less I could hear him. His main concern about dying was what would happen to my mother—his “bride.” Corny but sweet. At eighty-six, she had back problems, heart problems, memory problems. He took care of her on his own long after his cancer diagnosis. During my visits, he’d draw me aside, hoping my mother wouldn’t hear his worries, but not a word escaped her, even when she was in another room. If we talked about the possibility of her moving north with me, she’d shout from the other room, “I want to stay right here.”
Just before my father died, I called to say I was flying down the next day. The nurse held the phone to his ear. “I love you, Dad,” I said, “I’ll see you tomorrow.” As I waited for the nurse to take back the phone, I heard his voice, barely audible: “See you soon.” At least that’s what I think he said.
*   *   *
I got married at twenty, unwisely, to my high school boyfriend. We split up five tearful years later. I went from my unhappy marriage into a difficult and tumultuous romance with someone involved with someone else. It was the seventies, and to get back at the man I wanted, I had casual retributive sex with other men. I discovered opera, full-blown melodramatic Italian opera, listening to La Bohème and La Traviata, music that elevated my own unhappy life into tragic romance.
I worked at The New Yorker. I had walked in one afternoon, résumé in hand, and said I was looking for a job in magazine design. At The New Yorker, that department was called Makeup, and it was all men. Would I like to apply for the typing pool instead? It paid $106 a week.
There were a dozen of us in the typing pool, known as Walden Pond after Harriet Walden, the fifty-ish supervisor who hired the young women (and later young men) who constituted the lowest of the editorial ranks at the magazine.
We typed. We typed handwritten manuscripts from writers who didn’t know how to type. We typed revised manuscripts. We typed edited manuscripts. We typed and retyped. We filled in for absent secretaries and receptionists, which meant we met everyone who came and went. We were young, well educated, and available. Life at The New Yorker as I remember it in those years was one long flirtation.
As assistants and receptionists, we overheard and couldn’t help seeing what went on around us. Senior editors and writers and cartoonists had affairs with each other and with us. Some of them drank too much. They married and remarried, sometimes each other. Maeve Brennan, an Irish redhead and alcoholic, and a venerable Talk of the Town writer (where she was known as the Long-Winded Lady), slept occasionally in the nineteenth-floor ladies’ room on a couch tucked away in an anteroom. Her former husband, St. Clair McKelway, also an alcoholic, was said to have thrown a chair through an office door.
William Shawn, the august editor-in-chief, was famously eccentric. He was known as a devoted husband and father, yet he also had a decades-long relationship with the staff writer Lillian Ross, which she later wrote about in Here but Not Here. We’d see her in the office with her little poodle, Goldie, going in to visit Mr. Shawn. Sometimes she would come to the office with Erik, the tall, handsome son she adopted in Norway—who we fantasized was actually Mr. Shawn’s son. (Given the almost uncanny family resemblance in Shawn’s sons Wallace and Allen, who have the same sloped shoulders, round faces, and short legs as their father, this seems unlikely.)
The New Yorker offices had doors, which could be closed. The hotel down the street, then a dive, had a steamy reputation: “lunch at the Royalton” had a different meaning then. A charming and funny cartoonist (married) left flirtatious drawings on my desk. An editor twenty years my senior (also married) suggested we take a day off and go somewhere and have sex all day long, an idea that terrified me. (We didn’t.) Meanwhile, I flirted with Dan Menaker, who was then a copy editor.
Every February, The New Yorker had a party to celebrate its anniversary, at a ballroom like the St. Regis Roof or the Plaza. Food and drink were plentiful, and there was always a band. Spouses were not invited. After one party in 1974, Dan and I shared a taxi back to the West Side. He held my hand. That was it. Not even a kiss. I left my husband six months later. Dan was in a long-term relationship with someone but we dated sporadically, intensely at times, neurotically always. I listened to tragic operas and wept. Finally, in 1977, as my thirtieth birthday approached, I moved in with him. Six months later I left for Turkey.
*   *   *
Even after the episode of my hearing loss, although I took time out for doctors’ visits and an MRI, I kept writing compulsively about my trip to Turkey. A few months later, without so much as a by-your-leave, I handed Mr. Shawn an eighteen-thousand-word manuscript and asked if he would read it. He looked surprised, but accepted the pages I had in my hand. Two days later, he came back to me. “This is very good,” he said, adding that he thought I needed to add a passage about such and such. “And, Miss Bouton,” he said, “don’t ever do this again.” Next time, ask first.
The article appeared in the magazine as “A Reporter at Large” in 1978, my first New Yorker byline. I was thrilled. And the check seemed huge. I gave a portion of the proceeds to the New York Public Library—the first time in my life I had enough money to give some away.
Later I proposed other stories, some of which Mr. Shawn published and others which he bought and, to my frustration, held indefinitely. (He was so possessive about writers that this was a regular practice. When I left The New Yorker, there were some two hundred nonfiction pieces on the magazine’s bank of stories to be published. The introduction to the New Yorker archives at the New York Public Library says that some stories were held for as long as twenty years before they were reedited and published, or killed. One such story of mine, on the bank for a mere three or four years, was later repurposed as a cover story for The New York Times Magazine.)
In the fall of 1979, a year and a half after my initial hearing loss, Mr. Shawn let me accept a National Science Foundation grant to travel to Antarctica. I wrote about it in a piece that ran in the magazine under the title “South of 60 Degrees South.” I also sold some fiction to The New Yorker. One of my fellow Antarctic travelers was the NPR science journalist Ira Flatow. When we met afterward, he mentioned to my husband that he thought I was having trouble hearing. I knew that, of course, but I was embarrassed to realize that he did.
In February 1980, Dan and I got married. I think I heard my wedding vows: the chapel was an intimate space, and I was only half deaf then. We wanted to have children and set about trying. All too soon, it became clear we couldn’t. Several years of fertility problems, three tries at IVF, surgeries, grief, anger—hearing issues were easily eclipsed.
In many ways, infertility is like hearing loss. The sufferer is reluctant to acknowledge it publicly. The terms used to describe it are harsh: “barren,” “sterile.” I kept my reproductive problems a secret, even through three catastrophically terminated pregnancies, each involving a week in the hospital. Only my closest friends knew. Much later, when I began to mourn my hearing loss, I at last allowed myself to mourn my lost fertility, and my lost babies as well.
At the time, though, I shoved grief aside. Dan and I started the adoption procedure, another distraction from hearing issues. Our son, William, was born in August 1983; our daughter, Elizabeth, in November 1986. We adopted each of them as infants—Elizabeth was just three days old; Will was twenty days old. They were the silver lining of my infertility, the blessing that would not have been without that grievous experience.
Did I hear their first words? Does anybody really hear when “ma-ma-ma” and “ba-ba-ba” turn into Mama and Dada? I remember two-year-old Will pointing his chubby finger and saying, “What’s dat?” Then, later, “backhoe,” “front loader,” “construction site.” As for Elizabeth, a feisty girl right from the start and tormented by her brother: “Don’t bother me. Leave my lone.”
As they got older, I heard less and less. I had trouble at teacher’s conferences. One of the kids or my husband would fill me in. I missed most of what was said in school assemblies. I never heard a single graduation speech. There were times when my hearing loss was wrenching. I missed confidences, murmured fears, muttered anger. I never heard the backseat chatter and gossip between my children and their friends.
In 1988, when I was forty and my children were two and five, I went to work at The New York Times Magazine as an editor. I wore a headset for the phone, I worked with writers sitting on my right, and I always ensured that I was in the best position to hear at meetings. My colleagues at the magazine and in the various departments I worked in over the next two decades (science and the Sunday New York Times Book Review, bookended by two stints at the magazine) may well have known about my hearing loss, but we never spoke about it and I never acknowledged it.
*   *   *
Diane Ackerman, in A Natural History of the Senses, parses the origins of the word “absurdity,” derived from the Latin word absurdus. Absurdus means out of tune or silly or senseless, and comes from ab (“away from”) and surdus (“deafness”). She goes on to write, “The assumption in this etymological nest of spiders is that the world will still make sense to someone who is blind or armless or minus a nose. But if you lose your sense of hearing, a crucial thread dissolves and you lose track of life’s logic.” I think she’s wrong on this: life’s logic can make itself apparent, even to the deaf.
But I can’t disagree with her next thought: “Sounds thicken the sensory stew of our lives, and we depend on them to help us interpret, communicate with, and express the world around us.”
I hear voices, but I don’t always hear words. Speech is visual. I read lips, I respond to gestures and body language. My mind supplies the words I don’t get—or sometimes it doesn’t. My son and his girlfriend were moving. “She’ll have to give up Nona,” Dan said. “Nona?” A grandmother? A dog? What? “She’ll have to give up Nona,” he repeated. He has trouble remembering the need to rephrase. What he might have said the second (and third and fourth) time was “She’ll have to give up the place where she takes yoga.” Context is everything.
So is close attention to the speaker. Jess Dancer, an emeritus professor of audiology at the University of Arkansas, recently noted that “it’s not unusual for speech intelligibility to increase from 20 percent when listening in noise without vision, to 80 percent or more when the speaker is seen as well as heard.” Writing in an online professional hearing journal, he went on: “This four-fold performance improvement is based upon the principle of ‘bisensory integration,’ in which combining two senses produce[s] more information together than would be predicted from merely adding the performance of the two senses separately.”
“Bisensory integration” is also known as the McGurk (or McGurk-Macdonald) effect, after the two scientists who first happened on the discovery in 1976 that speech perception is multimodal. I’m a fair lip-reader, but I am a very attentive listener. Like many hearing-impaired people, I intuitively practice the McGurk effect—“hearing lips and seeing voices,” as they put it. This bimodal effect can also be achieved by reading captions or lyrics while listening.
Dancer feels that paying attention to the speaker is far more important than structured lipreading. Speechreading (the correct term these days) was the core curricular component at schools for the deaf until well into the twentieth century, when American Sign Language was finally recognized as a mode of communication. At the Center for Hearing and Communication in Manhattan (formerly the League for the Hard of Hearing), speechreading is an integral part of hearing rehabilitation.
I’d like to be a more fluent speech-reader, but the courses are time-consuming and the results varied. I was tempted after reading about the professional lip-reader Tina Lannin, deaf from birth, who managed to pick up much of the (predictable) conversation between Kate Middleton and Prince William at the royal wedding. “You look beautiful,” William said to Kate at the altar, later asking her several times if she was okay. The Queen, however, sounded peevish when she was “overheard” by Lannin saying: “I wanted them to take the smaller carriage.”
Even face-to-face, and with training, lipreading can be difficult. Researchers estimate that only 40 percent of the sounds of speech are visible on the lips. The letters b, m, and p look exactly the same. Then there are those troublesome mustaches and beards, or people who speak with their hands in front of their mouths, ashamed of their teeth perhaps, or while chewing, or looking down at their BlackBerry or rummaging in their purse. Oliver Sacks quotes a deaf woman in The Mind’s Eye who reads lips. When he turns his head away from her while talking, she says, “I can’t hear you.”
I have the great advantage of having heard for most of my life, which means I know what language sounds like and I can put the sounds I hear together with the sounds I expect to hear. It’s the unexpected that trips me up. Out walking with my dog, people ask, “How old is he?” “What kind of dog is he?” “What’s his name?” The questions are all the same length, and caught in the rustle of wind and the hum from the West Side Highway, they all sound the same to me. How old is he? Tibetan Terrier. What kind of dog is he? A year and a half. What’s his name? I usually get that one right. But when I reciprocate, “What’s your dog’s name?” Marley comes out as Paulie, then Barley; Fargo as Margo; Morris as Norris, Moreth, Norman, Mormon, etc.
Dan likes to talk in non sequiturs—his mind tends to race and he enjoys wordplay and leapfrogging through thoughts in conversation. I’m totally lost. In a noisy place—a dinner party, the street, a restaurant, the lobby of a theater, a waiting room with a television on, my book club, a room with a noisy air conditioner—I can’t pick up even the expected.
I’ve often wondered if I hear in my dreams. I sense that I hear voices, tone and pitch and intonation, as precisely as I once did. In dreams, it turns out, I am on level ground with those who hear. “When we hear voices, spoken language, in dreams,” Freud writes in The Interpretation of Dreams, “we are all abnormal in the sense that there is no actual source of sound around; all the voices are silently generated by our minds, not by some external entity.”
Sometimes I take my hearing aid and implant off and just relax into silence. Wearing them is tiring. Listening is exhausting. From the time I turn out the light till daybreak, I am essentially blind and deaf. My husband acts as my eyes and ears when he’s around. My dog fills in when he’s not. He barks when someone knocks on the door or, at our house in the country, when someone comes up the driveway. But like many people with hearing loss, I feel vulnerable at night. I think I would hear the smoke alarm right over the bed. I think the dog would bark or jump on me if someone tried to break in. I hope. There are devices designed for the hearing impaired—alarm systems that work with vibration or strobe lights—but for the moment I’m taking the low-tech dog route. (As it turned out, this too was a form of denial. See the last paragraph in the notes for this chapter.)
What do we hear when there’s nothing at all to hear? George Prochnik, the author of In Pursuit of Silence, went in search of the quietest place in the world and eventually found himself in the basement sanctuary of the Trappist New Melleray Abbey, in Iowa. The monk who showed him the way warned him, Prochnik writes, “that the silence of the room was so intense that it was likely to ‘take me outside of my comfort zone.’” Some people from big cities, the monk added, find themselves “physically unable to remain in the chapel for even five minutes.”
As it turned out, it wasn’t as quiet as it might have been. There was another monk in the room, “a large man sitting with his legs wide apart and his hands on his thighs, breathing quite loudly.” But that doesn’t seem to have disturbed Prochnik’s sense of the deep silence. The monks, he observed, listen to silence for self-knowledge. Far from being out of his comfort zone, he was disappointed when it was time to leave.
Prochnik doesn’t describe what silence sounds like, but I can. It’s noisy. The brain creates noise to fill the silence, and we hear this as tinnitus. Perhaps only someone with profound deafness can achieve this level of silence, so paradoxically loud. As Brad May, a professor of otolaryngology and head and neck surgery at Johns Hopkins University, explained to me, once the auditory machinery that would ordinarily be transmitting sound to the brain stops working, the synaptic balance in those neurons goes haywire, because nothing is regulating it, “nothing is pulling it down into its proper level of activity.” And so the brain starts generating its own activity in that pathway, and the result can be ringing, or buzzing, or humming—all of which fall under the catchall term “tinnitus.” Sylvia, in Nina Raine’s Tribes, says of going deaf, “No one told me it was going to be this noisy … It’s this buzz. This roar and outside … it’s all—black.”
I have it easy, and in fact kind of like my tinnitus: it changes pitch from time to time, an ethereal deep outer space keening.
*   *   *
Anatomically, the inner ear is one of the most inaccessible areas of the body. In addition, the structure of the inner ear is complex, delicate, and well protected by its bony casing. The result is that we know very little about what goes on there. As the Stanford University researcher Stefan Heller wrote in 2010, “We continue to lack nondestructive means of diagnosing or manipulating specific pathology for even the most common disorders.”
I spent years requesting tests and searching out far-fetched explanations. I repeatedly asked my ENT doctor, Ronald Hoffman, if there wasn’t another test or procedure we could try. Not impatiently, but with a certain weariness, he said, “We could do an autopsy.” An autopsy may well explain what went wrong in my inner ear, and why. But for now I am left with “idiopathic,” a word that sounds uncomfortably like “idiot,” which is how you often feel when you’re hearing impaired.
VOICES: BEN LUXON
The British opera singer Ben Luxon denied his hearing loss until he couldn’t anymore. That moment happened to be during a recital. The program was a Schubert cycle. “I sang the first song,” he told me. “I could see from people’s faces … hmmm … something’s not good here, and then the second song, I couldn’t even start. This was the pattern for the next five or six songs, until at last I just had to stop and say to people, ‘I can’t submit you or myself to this any longer, something is seriously wrong with my hearing,’ and so that was that. That was on a Friday evening…” By Sunday he was totally deaf in one ear and sound was seriously distorted in the other.
I visited Luxon in his comfortable kitchen in rural Massachusetts, birds on the feeder just outside the window. Luxon had continued to sing for some time, he said that day, even after he began to notice that things seemed out of whack. He was cast as Papageno in The Magic Flute for the English National Opera. During rehearsals the conductor mentioned that his voice was “a little sharp” in places, just above the correct pitch, but ENO wanted him to do the role anyway. “I couldn’t hear the orchestra—the orchestra sounded like people banging on big iron pipes in the bottom of a pit, it was just so distorted,” he said. “And the soprano, when I was singing the duet with her, that beautiful duet in Act 1, once she got above an F or G, her voice split like a cat yowling. It went in two directions, and I thought, ‘My God, this is really wild, bizarre.’”
A few months later, he was scheduled to sing the Schubert recital. Warming up before the concert, he said to the pianist, “I have no idea … I can’t hear where the pitch is.” He didn’t know where to sing. He stood beside the keyboard; he tried standing at the end of the piano; he moved around, looking for the maximum connection with the sounds from the piano. They went ahead with the concert anyway: “I thought for the concert, with a little adrenaline I’d probably be okay.”
He spent the following year being treated with steroids and a treatment involving chemotherapy. He got a hearing aid, and with 55 percent of the hearing left in his other ear, went back to his professional career on a reduced schedule. Eventually, after another two years, the stress and isolation of not being able to hear what was going on around him in a performance proved too daunting. He stopped singing.
These days, he’s turned to recitations and acting. To anticipate his cues, he roughly memorizes the whole play, so he can “feel” the length of speeches. We talked that afternoon for several hours, and quite often, to illustrate a point, he would break into song—a Rex Harrison half-singing/half-talking voice rather than his full-throttle operatic voice. With the aid of a cochlear implant and a hearing aid, in addition to his recitations and acting, he also teaches.
Luxon said he can hear the quality of a voice—he can tell whether a singer is using the voice properly, breathing properly, and so on—but not the pitch. “I had a lesson this morning with a very good singer, very nice. And so I’m perfectly fine, I play the piano as well. Hearing harmonics on the piano is difficult and I can play wrong notes all over the place, but I’m usually blissfully unaware.”
Luxon and his wife, Susie Crofut, have created a magical garden around their big house, which is a welcoming sprawl of rooms. On the day I visited, the house was full of children and grandchildren from their combined families. Susie’s late husband, the singer and composer Bill Crofut, whose music encompassed jazz and folk, had as part of his eclectic career collaborated with Ben, among other classical musicians. It is a musical family, and Ben participates in family music-making, but not using his operatic voice.
“I hear the birds,” he said. “I was sitting out on the deck the other day, it was so beautiful, and there was this damn bird that was going [he imitates the bird whistle], so I can hear the pitch and imitate it pretty accurately, but I couldn’t locate the bird. I didn’t know where to look.”
He laughed as he told me this, his Cornish accent and cheerful, resilient personality making everything seem really, actually, not so bad. “Location is gone, for anything … If I hear Susie calling … sometimes I get flashes of mini-fury, ‘For God’s sake! Where are you? Are you bloody well upstairs or downstairs!’” He laughs again. “That’s a funny one.”
He told me he had worked with a man in Boston named Geoff Plant, who had helped him recover his speech perception. Plant often works with musicians. “We did an experiment where I tried to sing properly with fairly full voice, and I sang all over the place. But then, if I sang lightly and fairly quickly, I sang in tune. I was convinced I was singing in tune both times.” He urged me to visit Plant, and to watch him work.
Ben Luxon has suffered a major setback; his singing career is over, the turn his professional life has taken is permanent. But of all the people I met while researching this book, he is the only one—myself included, I think—who has truly come to that elusive state of acceptance.


 
Copyright © 2013 by Katherine Bouton


Continues...

Excerpted from Shouting Won't Help by Katherine Bouton Copyright © 2013 by Katherine Bouton. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Interviews & Essays

Silent Epidemic: Barnes & Noble Review Interview with Katherine Bouton

Hearing aids have long been one of our running jokes about aging, an easy target stuck to the backs of every random AARP member. But millions of Americans who aren't anywhere near retirement also suffer from hearing loss — and most don't do anything about it. Nearly 20 percent of Americans between 12 and 64 have some version of it — and many of them don't use hearing aids or cochlear implants. Only one in five people who could benefit from a hearing aid actually wears one.

Katherine Bouton, the author of Shouting Won't Help: Why I — And 50 Million Other Americans — Can't Hear You, was once one of those people. She lost the hearing in her left ear when she was 30 and the other ear slowly followed, but she wouldn't get herself hearing aids for another two decades. That proved a big problem for a senior editor at The New York Times, where she spent 22 years essentially hiding her loss while performing such tasks as overseeing daily theater and books coverage.

Now she's got a cochlear implant in one ear and a hearing aid in the other and a new, fascinating book that tells the story of her loss and many others while also getting the lowdown on what research is in progress to help eradicate the problem. Shouting Won't Help could serve as a primer for dealing with adult-onset hearing loss. Bouton runs through the mental difficulties of the muted life and provides a window into the world of live television captioning ('Knelt unyahu' for 'Netanyahu') and rock bands' and sports arenas' never-ending quest to be the loudest in the world. From her home in Manhattan, Katherine Bouton spoke with us via email about her new book and what it's like to live in a half-heard world. —Mark J. Miller

The Barnes & Noble Review: What was it like to be one of the main arbiters of what was important in New York theater and culture when you couldn't hear the shows? How difficult a burden was that?

Katherine Bouton: I wasn't arbiter of what was important in theater. The theater critics — Ben Brantley and Charles Isherwood, the first- and second-string critics — decided what they would review and wrote their reviews without consultation with me. I never edited their opinions, only their prose (and generally not even that — they're both pros). Virtually everything on or off Broadway is reviewed on opening night. Off-Off Broadway shows were reviewed by others on staff who do theater reviews, among other jobs. Mostly these were assigned based on the track record of the director or playwright or the theater company. I could never have been a critic with my hearing loss. But as an editor, I merely missed the full enjoyment of the experience. I could still edit and assign. I could also, of course, appreciate design and lighting and costumes, and acting; even if I didn't always get the words, I saw how the actors moved and looked and interacted with one another, and how they interpreted the character. The same with direction — I could see the director's interpretation of the play. One trick I had for making the theater more enjoyable was to read a play both before and after I saw the production. If it was a new play, the publicist would generally give me a script. If it was a revival, I'd buy the play at the bookstore. I came to love reading plays — and I still do it, just for pleasure. So often the playwright's intentions get lost in the distractions of the acting or the production.

BNR: Acting, as you note in the book, is something the hearing impaired are very familiar with. You write a lot about 'faking it' so others wouldn't figure out that you had any hearing issue. Have you discovered since you have been more open about your hearing loss that there are fewer mix-ups? And have you found out later that any of your 'faking it' wasn't actually working quite as well as you had thought?

KB: Absolutely. I did manage to fool a lot of people. Even my best friends didn't know the extent of my hearing loss. But it was definitely not actually working as well as I thought, and I lost my job in part because of that secrecy. In retrospect, I realize that I was doing far greater damage to my image by faking it than I would have by simply explaining my hearing loss. People are afraid of being seen as old or stupid if they admit to hearing loss. But the truth is that they seem old or stupid if they don't acknowledge it — or aloof, or not interested in their job or in what their friends are saying.

BNR: But what about the actual act of reporting? How has having a hearing loss changed the way you go about reporting?

KB: The main issue is how I do interviews. I can't do phone interviews so I find myself flying or driving all over the place to do interviews in person, face to face. I sometimes also do email interviews. In face-to-face interviews, I use a tape recorder so that I can really focus on what the interviewee is saying. I think I listen much more carefully and I find that I ask more follow-up questions than I used to. When I leave an interview, I'm often not sure what was said. But when the transcriber sends back the transcript of the interview, there it all is. It's fascinating to hear myself ask questions and hear answers that I have no recall of. That's because, I'm using up so much brainpower simply hearing and processing what I hear that there's no cognitive room left for remembering it, hence the need for the tape recorder. I also think hearing loss has made me more creative and productive as a writer. I can't hear radio or my iPod or books on tape, so when I walk or work out at the gym, I'm thinking. When I drive, I'm thinking. Sometimes I tackle a specific problem but mostly it's just floating free-association. A lot of good ideas pop into my head. I also don't go to movies (unless they have subtitles) or theater (unless it's captioned) or to hear music, and I watch very little television, so I have a lot of time for reading and writing and reflection.

BNR: You wear a hearing aid in one ear and a cochlear implant in the other. More and more deaf and hearing-impaired people are turning to implants to help rectify their hearing at younger and younger ages. Do you feel that cochlear implants are also reaching a higher level of cultural acceptance and have less of a social taboo than hearing aids?

KB: There's a great deal of misunderstanding about cochlear implants. They are wonderful for people who have lost all their hearing, but they are a last resort. Far fewer people wear — or need to wear — cochlear implants than hearing aids. Some think that cochlear implants are just a better hearing aid, but that's not true. A cochlear implant is meant only for someone with profound hearing loss. Natural hearing, even amplified by a hearing aid, is always preferable. The sound quality provided by an implant is quite different from the sound quality with a hearing aid, which amplifies natural sound. A cochlear implant delivers information to the brain digitally, and the wearer has to learn how to recognize these digitally generated sounds as speech. Cochlear implants are very expensive, usually at least $70,000. Although private insurance, most Medicaid programs and Medicare all pay for cochlear implants, the eligibility bar is high. Beyond that, a cochlear implant requires delicate surgery, a recovery period to heal the scars caused by inserting the implant under the skull, and generally it's there for a lifetime, unless you choose to have the implant surgically removed. At the moment, the surgery required to implant the device destroys any extant hearing in that ear. New devices are in the works that would preserve existing hearing but as far as I know, they haven't received FDA approval.

BNR: What was your biggest surprise in all the research you did for the book?

KB: The biggest surprise was finding out how many people have hearing loss. There's such a stigma associated with hearing loss that people don't want to acknowledge it, with the result that there is not much consciousness of hearing loss in society at large. But tens of millions more people suffer hearing loss than vision loss. Look at how many of us wear glasses! Tens of millions more should also be wearing hearing aids. It's another indication of the stigma of hearing loss, and the denial that accompanies it. This stigma also affects statistics. When I began my research, the accepted figure for those with hearing loss was 36 million. This was the number used by the NIDCD (National Institute on Deafness and other Communication Disorders). Then, about a year into my reporting, Frank Lin at Hopkins published the results of an epidemiological study that set the figure at 48 million. Lin's was a carefully documented study, with hearing loss determined by hearing tests. The NIH is certainly a reliable source. How could there be such a disparity?

Finally after many weeks, I finally got the answer from the NIDCD. Their figures, it turned out, were self-reported cases of hearing loss. As is typical anecdotally, a quarter of those surveyed by the NIDCD denied that they had hearing loss. Most official reports now use Frank Lin's 48 million figure.

BNR: And it seems like hearing loss could get more prevalent. The volume of the world is much louder than it was only a few short years ago. You wrote about how the decibel levels of some toys for toddlers is deafening, and the ubiquity of earbuds in teen and young adult ears is potentially damaging over the long haul. Hearing impairment already isn't so much the issue of the aged as people think it is, but will it become an issue for the younger and younger?

KB: It already is an issue. Nineteen percent of teenagers have some degree of hearing loss. Part of this may be from excessive iPod use, but it may also be from video games or the decibel levels at sports stadiums or concerts, or in restaurants, or simply living in a noisy city. Farm work is often damaging to the hearing because the machinery tends to be so loud. Recreational shooting is very damaging to the hearing. Overall, the rate of hearing loss for younger people is probably not that much higher than it was a century ago. But it should be far lower. A century ago, diseases like mumps, measles, scarlet fever or any kind of high fever, as well as a general lack of good health, resulted in large numbers of young (and old) people with hearing loss. These days, children don't get those diseases; they aren't sent to work in factories at a young age or into mines or sent to work around noisy machinery. The incidence of hearing loss in young people should have gone down. But it hasn't. The difference is that now the causes of hearing loss are avoidable. Hearing loss can largely be prevented.

BNR: I was fascinated by the revelation that the U.S. government is paying more than a billion dollars annually to help veterans deal with tinnitus and hearing impairment (and that those two outweighed claims for PTSD in 2010 by more than triple). Do you see the government's drive to find sources of prevention and treatment as something that will spill over into the private sector?

KB: Hearing loss and tinnitus are the two largest categories of service related disability claims in the military. PTSD is third, and generally far outweighs hearing loss and tinnitus in its impact on the veteran's life. PTSD is more expensive to treat, and a devastating condition for many. But yes, the VA is doing very good work on hearing loss and especially on prevention. The Department of Defense has set up an ambitious "Hearing Center of Excellence" at Lackland Air Force Base, in Texas, where researchers are developing better kinds of hearing protection, better registries of hearing loss, more efficient clinical care and doing other research into hearing loss. The executive director of that Center is Lt. Colonel Mark Packer, who is also a member of the Hearing Restoration Project, a consortium of scientists whose work is funded in part by the Hearing Health Foundation. Consortium members share their findings, and often work collaboratively. The military contracts with private sector researchers on some projects, and it shares its own findings. The military is especially interested in hearing loss prevention. One of their successes is an earplug that shuts down when an excessively loud noise, like a blast, occurs, but allows wearers to hear what their colleagues in the field are saying.

BNR: What brought you the most hope as you put together the book?

KB: For me personally, coming to know other people with hearing loss, becoming active in the Hearing Loss Association of America, gave me perhaps not hope but comfort. I was not alone in this. I also hope this public awareness will lead to insurance coverage for hearing aids. Right now, hearing aids are considered medical devices, and — except through the VA — are covered minimally or not at all. I also am made hopeful by increasing public awareness of hearing loss. Not only will this result in accommodations for the hearing impaired but it will encourage those with hearing loss to accept it, and to get it treated. As of this writing, one in seven people who could benefit from hearing aids uses them. That's ridiculously low. What brought me most hope was the research that is being done on finding a cure for hearing loss. Researchers nationwide, but especially at the University of Washington and Stanford, are making tremendous progress in learning how sensorineural hearing loss might be prevented (by gene therapy in those with genetic hearing loss) or reversed (in those with hearing loss caused by noise or other ototoxins). Practical applications are far in the future — I'm pretty sure I won't be around to see them. But they do represent hope that hearing loss will become a rare event.

—March 14, 2013

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Customer Reviews

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Sort by: Showing all of 13 Customer Reviews
  • Posted February 19, 2013

    I must preface this with--I have not yet read the book, but was

    I must preface this with--I have not yet read the book, but was intrigued by the title. Dr. Oz somewhat recently had a segment on the use of NSAID pain killers and their correlation to hearing loss--just thought I'd pass that on so you can look it up.

    4 out of 9 people found this review helpful.

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  • Posted March 20, 2013

    not very helpful

    I have been hearing-impaired for most of my life, and deaf for the past couple of years. This book is too technical to be helpful to the average person. It might be more helpful to someone who is not yet deaf, or someone who was just diagnosed. I have been through countless medical and audiologist procedures. This book was not helpful to me, and was very disappointing. Save your money. I was I did.

    1 out of 2 people found this review helpful.

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  • Posted March 19, 2013

    If people would only face me and talk normally...

    I, like the author am hard of hearing. I have also worked with the Deaf for more than 50 years. This book tells it like it is and if folks would only be more understanding (no, I don't use Braille) and (yes, I can hear some).

    1 out of 1 people found this review helpful.

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  • Posted March 14, 2014

    I have Meniere's disease and have lost 90% of my hearing in my l

    I have Meniere's disease and have lost 90% of my hearing in my left ear, 60% of hearing in my right ear, about 20 years ago. This book was a revelation for me. Ms. Bouton writes with candor and compassion about realities I've tried to hide, even from myself. I'm very grateful for this book and am sharing with people in my life who, I'm sure, have struggled to understand what I'm living with.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted March 7, 2014

    Highly recommended

    After receiving information that I am hearing impaired, I ordered this book. The author is hearing impaired. She provided much information about her disability. It was a good read.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted December 10, 2013

    I found this book extremely helpful as I have traveled a similar

    I found this book extremely helpful as I have traveled a similar journey.  The hearing world would benefit from reading it.   Yes, it has some technical discussions, but they are appropriate and informative. Ms. Bouton was very receptive to my email inquiry.  Living with a steady loss for the past 16 years, the "ripple effect" involving the personal devastation of gradual hearing loss (social, economic, psychological, etc.) has been more than challenging.  I thankful that Ms. Bouton put her experience into words and I look forward to following her journey.

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  • Anonymous

    Posted March 29, 2013

    Interesting and useful

    As a person with 'moderate' hearing loss I found this book to be both interesting and useful. Now i fully understand why i no longer enjoy parties as much as i used to. I see that i have been withdrawing from people outside of my immediate family. And I understand why it is important for me to wear my hearing aids everyday. (I used to wear them only while in business meetings where I absolutely had to hear everything that was said.)

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  • Posted March 12, 2013

    Bouton nails it clean! Being hearing deficiet all my life and st

    Bouton nails it clean! Being hearing deficiet all my life and still achieve a high level career position, I appreciate her perspective and the many struggles along the way. This book is an excellent education for hearing people, especially bosses and co-workers, and reinforcement for those who suspect they are hearing impaired but don't want to acknowledge it, and hopefully will elevate understanding for everyone with regard to the impact of hearing loss. Many thanks to Katherine Bouton. Now lets get a reliable technical manual out so we can find the equipment we need to help us carry on.

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    Posted February 21, 2013

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    Posted March 19, 2013

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    Posted April 15, 2013

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    Posted February 19, 2013

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    Posted February 28, 2014

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