Music and Medicine

 

The Song of a Thousand Cicadas
A progressive deafness reshapes a physician’s life.
by Sanjay Gulati
a cicada in flight
Family legend has it that for his spiritual health my father was advised by his guru in India to hear Beethoven’s Pastoral Symphony. Another guru recommended a raw onion a day for longevity. I grew up nibbling raw onion and consumed by Beethoven. I knew of Beethoven’s progressive deafness, the loss of his concert career, the Heiligenstadt Testament in which he contemplated suicide, and the final musical expressions of both denial and transcendence. I never expected to share anything with Beethoven, least of all the affliction that caused him such pain.

In high school, for no reason I could name, I replaced my alarm clock with a lamp connected to a timer. I developed an aversion to sitting at the back of class and became a fixture in the front row on the right. In college my grades suddenly fell, but with a strange pattern that I did not understand until years later: I continued to do well in small, quiet classes while having difficulty with large, noisy ones.

The paradoxical experience was that advanced classes seemed easy and introductory ones hard. I thought surely I was losing my mind. Parties and group activities never felt as interesting as a quiet tête-à-tête. Yet I suspected nothing, believing that seeking intimate connection was some type of developmental phase.

It was two more years before I learned that it was an insidious gradual hearing loss that was distorting my life, slowly making school a nightmare and making me fantasize life as a mathematical hermit. Reality struck at home one weekend when I discovered that I could feel but no longer hear the once loud ticking of an old mechanical clock.

First audiogram. I am led to a small soundproof chamber with a heavy door, like a bathysphere. Silence at first, then the slow crescendo of the tinnitus that appears when I am in a quiet place, the song of a thousand demented cicadas. Behind a panel of dials and switches, I can see the face of the audiologist as she raises the volume, obviously disappointed and increasingly concerned. Two huge loudspeakers, inches from my face, are mute to me. I feel I am sinking through depths. The audiologist turns up the volume further, until I hear a faraway pulsing beep. I am found to have a mild to moderate hearing loss, due to otosclerosis.

Through repeated audiograms over the succeeding years, only one of the many audiologists I meet ever mentions the powerful emotions that accompany a test designed to push you till you fail. Now, I almost forgive them, knowing how hard it would be to sit with a patient and face the raw feeling of defeat.

I had been studying physics and philosophy. After failing the audiogram and being fitted with a hearing aid, my grades rapidly rebounded, but my life felt hugely changed. I lost confidence in my abilities. I dreaded the future. I was suddenly and uncomfortably aware of my mortality—it seemed that a part of my body had prematurely died. My previous stance of detached nerdiness no longer seemed an adequate answer to life. These feelings nudged me, along with the nudging of two physician parents, toward a last-minute decision to forget physics and attend medical school.

First year of medical school. Le Nozze di Figaro with friends. We have good seats, but I have forgotten my hearing aid. Mouths are opening and closing on the stage. There is a buzzing sound that must be connected to the sawing of the violins. The flutists are urgently but silently fingering their flutes. Louder passages are musically clear but wordless. I am bored and itch to leave.

Third year, emergency room rotation. I am using my father’s ancient stethoscope with oversized tubes. I clear an asthmatic child for discharge. There are no wheezes. The attending physician listens, tells me there are still wheezes, and shows me where to find them. I listen again, hard, but hear nothing. It is clear that I will not be an emergency room physician. I am losing five decibels a year, with no sign of the remission usual in otosclerosis, and no benefit from stapedectomy.

Otosclerosis is not supposed to strike this hard, or this young. A CT scan shows dozens of foci of active disease, spicules of out-of-place bone attacking middle ears, cochleae, and auditory nerves. The disease is hereditary, and my father’s case is more typical: his mild hearing loss was surgically corrected and barely affected his career.

I had enjoyed my psychiatry rotation on a consultation service and had volunteered at a crisis hotline in college after a friend’s suicide. Pathology and radiology, the only other apparent choices, seemed likely to increase social isolation. Psychiatry also offered a chance to explore the subjective world, a nice mirror image to my college interest in deeply understanding the objective one. I began telling anyone who asked, with a confidence born equally of ignorance and bravado, that I would be a psychiatrist for the deaf.

Sonia, nine years old, deaf, and profoundly developmentally delayed, ducks in and out of the bathroom, smiling hugely each time she makes eye contact. Inside she is repetitively washing her hands and running the electric hand dryer. In addition to symptoms of obsessive-compulsive disorder, she has a range of more disturbed behaviors that began a year ago, after her school bus dropped her at the wrong stop. She endured three hours of teasing by other children before the police brought her home. She knows only 22 signs. Without language, talking about the event was impossible, and she seems to have developed full-blown post-traumatic stress disorder. She understands that the bus left her at the wrong place. She does not understand that it was not supposed to happen.

Terry follows on my elbow, responding to shoulder movements that tell him ‘door to the right,’ ‘someone’s coming, move behind me,’ or ‘step up now.’ He explores my desk with light fingers, mouthing the names as he identifies objects. To talk, I place my hands within his cupped palms. As I sign, his hands move with mine, as he mentally constructs each sign from the small part of it palpable to his hands. The communicative presence behind this deaf-blind person’s hands is so powerful that it gives me chills.

Janis Cole, deaf woman, actress, language researcher and activist, is signing in a meeting. For a moment she can’t recall a fact with her signing right hand. She slaps her right hand with her left, as if it were a malfunctioning television set. The gesture is so funny that the room erupts in laughter. Endless verbal creativity with a sense of humor are present everywhere in the deaf community.

Early on, I could never have imagined the pleasures I would eventually find in the world of deafness. I was for years mired in the experience of progressive loss. Despite my bold medical school declaration, I avoided deafness and deaf patients through most of residency, spending much of my time grieving in private. The symphony orchestra slowly lost its instruments, like the Haydn symphony in which the musicians pack up and walk out one by one until only a solo violin is left playing. Thankfully perhaps, with each decrease I rapidly forgot that music had ever sounded much better. Twice, when my hearing aids were replaced with more powerful models, I was astonished that footsteps, wind, and birds made so much noise. A similar amnesia was reported by the progressively blinded man, John Hull, in his book Touching the Rock. For a time he remembered each person’s face as he last saw it. Then he lost the concept that people have faces.

There is no dignified way to lose one’s hearing. In residency I was forced to be increasingly assertive and open about my condition: Could you repeat that? Do you have an amplified phone here? Could everyone be quiet while I make a call? Would the department consider buying a new microphone for that system? (The answer, before the Americans with Disabilities Act, was “No, that wouldn’t make sense just for one person.”) I felt permanently seated at the back of the auditorium of life, which often seemed to be happening very far away. Occasionally, the distance would abruptly vanish in a zany or bizarre episode of mis-hearing and misunderstanding that would draw everyone’s understanding my way.

I had seen my first deaf person during an early visit to an audiologist. A thin, ill-kempt man was gesturing rapidly to an uncomprehending receptionist, accompanied by guttural, ugly sounds. As his frustration and her impatience grew, his gestures became wilder and his utterances louder. The receptionist plainly wished he would go away. The horrible scene is burned in my memory. Why couldn’t he speak? Would this somehow be me?

With the support and encouragement of teachers and peers, I finally began seeing deaf patients late in residency, gathering speed during my child psychiatry fellowship. Some, like the man in the audiologist’s office, had damaged language skills, being in neither American Sign Language nor English. Many, when seen with an interpreter, were sophisticated people who had seen more than their share of misunderstanding by the hearing world around them. The Gallaudet Revolution, the Americans with Disabilities Act, and the play and film Children of a Lesser God raised the country’s consciousness and caused pride to surge among the deaf. I began to lose my fear of becoming deaf. Spending more time with deaf people, I found that they had all the usual psychiatric problems, plus some special difficulties related to the most serious problem they face: acquiring signed or spoken language.

Looking back to my first experience with the deaf man and the receptionist, my reaction to the scene has changed. I am no longer put off by his vocalizations. After all, they do not differ from the hand gestures that hearing people often make as they speak, often unwittingly signing something rude (to the amusement of any deaf person who sees). I also understand the man’s difficulty with English. Is it reasonable to expect deaf children to learn language they cannot hear? How many hearing adults could read a book with every other word crossed out, sit in a lecture they could barely understand, or learn a foreign language from within a glass booth?

I have come to accept the model of deafness that most deaf people themselves espouse: that there is a distinctive American deaf culture, built on shared experiences and the use of American Sign Language. Along with this distinctive culture come distinctive beliefs that often differ from those of the hearing majority.

Consider, for example, the birth of a deaf child. To most hearing parents this is a tragedy of the first order, leading to intense, often lifelong grieving, self-blame, and anger. To most deaf parents, the birth of a deaf child is the most natural thing in the world. In the wider deaf community, which has multi-generational deaf families at its core, it is a cause for celebration.

I believe that the grief in the first case and the joy in the second share a common root. The hearing parents are stunned by the thought of being unable to impart their native tongue to their child. The deaf parents are happy in the knowledge that their child will sign as they do. Both feelings, though opposite, recognize the crucial importance of language to our humanity.

In 1970 in California, a child was found whose parents had deprived her of language until early adolescence. This latest “wild” child fascinated linguists and cognitive scientists. “Genie,” as she was called, subsequently failed to learn grammatical English, lending support to Noam Chomsky’s theory that a grammatical first language can only be acquired during a critical period in childhood. In the world of the deaf, apparently unknown to researchers at the time, the experiment of language deprivation in varying degrees has been a constant presence for centuries.

Charla is deaf and has no language. As a child, she was sent home after a few days of school as “uneducable.” She can cook simple foods, care for herself, and perform household tasks. Sometimes she smiles, and sometimes she frowns, but we cannot know what she thinks. After months of intensive language exposure, she gets caught in a rainstorm. With an ecstatic grin she connects two signs to mean: “Wet in rain—loved it!” It is the first time she has communicated something to another human being.

José also had no formal language exposure, but his family copied and used his own invented “home signs” and he learned some elements of his country’s sign language from deaf people met in the streets. In America he tries to learn American Sign Language, but will never be fluent. His nonlanguage communication, which lacks tenses, plurals and sentence structure, is termed “visual-gestural.” The people who can understand him best are those who have native signing skills and show extraordinary patience in working with him.

Sandra’s parents are devoted to keeping her mainstreamed in her local school. At age 15, despite above-average nonverbal intelligence, she has the English and American Sign Language capacities of a nine-year-old. Her only exposure to sign has been through educational interpreters. To her classmates, she is “special.” She manages the difficulty of relating to peers through an interpreter better than most deaf adolescents. Her choice of close friends is limited to those who have learned some sign. Kept from awareness of her true language delays by caring parents and modified grading, and with no contact with other deaf people her age, Sandra believes she is doing well. As an adult Sandra will realize that she has an irremediable language delay, that she is an adult with the language of a child. She will also discover that because of her language delay she is naive about the world.

Many graduates of “oral” programs of the past, and of the mainstream and inclusion programs popular now, show deficits in both English and sign language skills, but there is little hard data about the extent of the problem. A group of British researchers performing a psychosocial study were shocked to find that of 100 orally educated deaf children (with normal brains) more than half were so language deprived they were difficult to interview. The deficits of 17 were profound. One mother, describing her 22-year-old son, said, “He can’t really sign, but he loves his tummy. If he wants a biscuit or anything like that he’ll do it [rub his stomach] or if he wants to go for a walk he’ll [point at the door].” That is, insufficient language exposure had induced a state of effective mental retardation.

“Language” in the past always meant only spoken language. It is now recognized that sign languages are linguistically equivalent to spoken ones. I believe that because of its essential role in psychological, social, and intellectual development, having a fluent language, any language, is the greatest need of the deaf. To experience the animation, the rapidity, and the ease of communication in sign language is to understand immediately why deaf people reject the communication solution that occurs naturally to most hearing people: to amplify or implant, and then to struggle to hear and to speak. And this solution crucially leaves out the role of language in allowing us to talk ourselves through problems, to explore our own insides and to create our own narratives.

The most extreme consequence of this inability occurs when a child with poor language is abused. Such a child lacks the language to say (to others or to himself) “so and so did such and such to me,” and can develop a peculiarly powerful form of post-traumatic stress disorder, in which body memory and visual hallucinations are prominent, and there is no sense of time or place. (Psychotic deaf people, by contrast, typically experience auditory hallucinations, suggesting that the mechanism of psychotic hallucinations is hardwired to hearing.)

Stacy is in restraints again, writhing and mouthing a leather strap, once more acting out an experience of sexual abuse that occurred before she had language. Her movements are sickeningly inappropriate for her age. She avoids eye contact during each episode, thus cutting off signed communication. In between episodes there seems to be an opaque shield that prevents our getting any verbal access to the experience. As with so many other pre-lingually traumatized children, her symptoms are unreachable to treatment, and continue unabated for months.

Jack sees the walls distort into terrifying masks. He sleeps with the lights on and the door open. His waking thoughts are often intruded upon by vivid and horrifying visual hallucinations. He was physically abused in middle childhood, and had no language until late childhood. Once more, there is no verbal access to the experiences, either of the abuse or of the hallucinations. He eventually responds to extended residential placement with intensive one to one support.

American Sign Language is the fourth most widely used language in the country. Both the football huddle (for private signing) and baseball signals originated with deaf children. Yet it is a surprisingly invisible community, and medically it is terribly underserved; only a handful of physicians in the United States work with the deaf. I encourage my colleagues, with open hearts and minds, to explore this hidden world for themselves.

I live now between worlds, signing well enough to feel comfortable around deaf people and to see linguistically intact patients without an interpreter. My wife and family are hearing. Many friends and coworkers are deaf. I use an interpreter myself for groups and meetings. During the long slow decline in my hearing, some people were hurtful, but most were very helpful. So much of what I do now was created by the responsive goodwill of others. The deaf community, a little scary at first because of its reputation for militancy, has been wonderfully inviting and supportive. Where I may have become a somewhat disconnected physicist, I have instead become a deeply involved and thoroughly fulfilled physician. It is difficult, in looking back over the journey so far, to see my hearing loss solely as loss or affliction. It has brought more into my life than it has taken away.

Sanjay Gulati, MD, is a clinical instructor at Harvard Medical School; the director of the Outpatient Clinic for Deaf and Hard-of-Hearing Children, Adolescents, and Families at Cambridge Health Alliance in Massachusetts; and a child psychiatrist at the Boston Center for Deaf and Hard of Hearing Children at Children’s Hospital Boston.

This article appeared in the Winter 1998 issue of the Harvard Medical Alumni Bulletin.

Photo: Deborah Roundtree/The Image Bank/Getty Images


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