A Matter of Dignity

by Andrew Potok

  It seems that our bodies can often remember what our minds cannot. Music provides a gateway to lost function. Spontaneous movement as a response to music seems to happen as a matter of course. In other words, the potential for movement may be there, as in people with certain motor dysfunctions, but the ability to initiate movement is lacking. Aside from this, a song can, of course, encapsulate an entire period of a person's life, and hearing it can restore the essence of that reality. Everyone has a hundred examples. A Frank Sinatra tune brings me back to an adolescent summer on the beach, a Mozart quintet to a fabulous year in Paris, Benny Goodman's Carnegie Hall concert to the hip-swinging joys I associate with standing in front of my easel, painting.

  Connie has written that the nervous system, often compared to computers, is in fact more like a symphony orchestra, in which everything must be synchronized, harmonized, melodized. It echoes the inner music of the organism, the silent music of the body.

  Knowing little about the effects of music on people whose minds were dramatically changed or stilled by severe neurological disorders, I was awed watching Connie, accordion on her lap, playing “Auld Lang Syne” or “Oh What a Beautiful Morning,” then witnessing severely impaired or comatose patients return to momentary or prolonged consciousness. I realized that when internal music has been disrupted, the need for external music is overwhelming.

  Some people live full, productive lives without visual stimulation, some without music. But functioning eyes and ears and a drive to use them fully provides enormous sensual and intellectual satisfactions. Sight and sound soothe, stimulate and heal. They feed our imaginations and energize the neurons and synapses of our brains. So, perhaps, smell, touch and taste. I wondered if what is accomplished therapeutically by way of music could also be accomplished by a familiar touch, the sound of a foghorn, a perfume, Proust's madeleine. But when the brain's mechanisms are severely impaired by accident, illness or age, these formerly active processes need help.

  Connie Tomaino's informed reach into people's lives, sometimes just for pitifully short contact, was not intended to numb or soothe. The lessons of her dramatic reach were profound. She took me on an intense journey, showing me an extraordinary kind of patience and deep love for people who at times were only nominally present. Still, they were people with long lives behind them, replete with fading thought and experience, lives that continued to be worthy. With infinite patience and love, she transported them, even for that instant, back to fuller, richer times. It was not only worthwhile but a deeply generous act, representing for me humanity at its best.

  INTERNAL MUSIC

  Connie To maino is the director of the Institute of Music and Neurologic Function at Beth Abraham Hospital in New York City. She has just moved into her new office, still piled high with unpacked boxes, CD players and tape recorders. We are a little cramped as we sit facing each other, for the relatively small space also accommodates a piano, all kinds of percussion instruments, another keyboard and the accordion she uses most often in her music therapy sessions. Through her windows she can see the Bronx Botanical Gardens, where she and her colleague and mentor, Oliver Sacks, walk and talk during his Wednesday visits to the hospital.

  Silently fingering her accordion, Connie observes that for her, a deep understanding of music came late, well after she had become a good instrumentalist. She is probably one of about four people in the country who are looking at the neurological aspects of music and the recovery of function. Most other music therapy is psychotherapeutically oriented, while her work is predicated on the assumption that our bodies can often remember what our minds, when severely disturbed, no longer can, and on memory being resilient enough to restore lost functions through music. A specific piece of music can help a dementia or an amnesia patient recall personal information. For people who can't process or sequence memories, music brings back to life entire areas previously unreached and unreachable.

  “So picture this,” Connie says, her soft voice competing with some noisy announcement over the hospital loudspeaker outside her office. “An Australian film crew wants to do a segment on music therapy. They contact me and I'm delighted. It's supposed to be part of a series called something like Health Watch or Body Works or some such thing that was popular at the time, the late 1980s.

  “I'd been running a group of five women with severe dementia and that's the group the Australians decided to film. They arrived on a very hot summer day and set up their equipment. When they turned on their incredibly bright lights, all five of my women fell fast asleep.” Connie sits demurely, like a proper schoolgirl, her hands on her lap. Only her eyes betray the delight with which she recalls the scene. “So the subjects of the film were snoring away,” she says. “The new PR man that the hospital had just hired was anxious, the film crew totally stumped. ‘Don't worry,’ I told them. I know these women well. They each have what I call a contact song.’ ‘A what?’ the cameraman asked. ‘Listen to this,’ I said, and I played ‘Let Me Call You Sweetheart’ on the accordion and up popped the head of one of the women, totally awake, answering questions, singing along. The woman next to her was not only suffering from severe dementia but she was totally blind. Her head was thrown back rigidly and she was making disturbing gurgling sounds. So what did I do? I played ‘When the Saints Come Marching In’ and she snapped to, her head erect. She was awake and aware, telling us where she was from, one of the Carolinas, I think. One by one, these incredible women responded to the music that meant a lot to them. Afterwards, they retreated back into their dementia.”

  The picture of the five women sleeping under the klieg lights is poignant, the resolution of the scene amusing, upbeat. But I wonder if being brought back for a matter of minutes isn't more of a game than a significant contribution to those women's lives.

  “For me, reaching people who seem unreachable, even for a very short time, is momentous,” she says. “I'm quite sure it is for them too.”

  Connie Tomaino is small and compact. Her curly hair sits up like a halo around her head. Alive with stories, observations and a most articulate knowledge of music and brain function, her words are spiced with a Bronx accent as savory as Genoa salami.

  “There was never a question about helping others,” she tells me, “it was simply what one did. I knew from the beginning that life only had meaning when you were helping other people.”

  All the kids in her family were expected to do work that served people. She and her siblings could be doctors, nuns, nurses or missionaries. “Even the brother who works in business spends every off-moment volunteering in hospitals,” she says. Her father, who ran a fruit stand in the Bronx, worked hard six days a week, and on the seventh, he was running around doing things for others.

  Connie worked with Down syndrome kids while she was still in elementary school, then, much later, in a small nursing home in Brooklyn, with Alzheimer's patients. “They were agitated,” she says, “unaware of their surroundings, yelling, screaming, seemingly unreachable, yet I discovered early on that they responded to music.”

  In the mid-1970s, when Connie chose music therapy as her field, it wasn't the first time her parents had to find a way to understand her or her obsession with music. There was the trumpet. She would come home from school and run up to the attic to practice. “My mother used to cry, ‘What are your children going to say about a trumpet-playing mom?’ Once, when I was in high school,” she says, “my mother and I got tickets to a show called Dial Mfor Music. We watched Dizzy Gillespie, a guest artist, blowing the trumpet with his cheeks bulging. ‘See, see,’ my mother cried, ‘that's what's going to happen to you.’ “ She laughs. And later, her parents would say gingerly, “So tell us again what you're going to do. Play music for sick people?” Being the first woman in her family to go to college, this decision wasn't looked on with much hope or pride. “In fact,” she says, “they thought I was nuts. ‘If you're so smart, why can't you be a teacher or a scientist?’ they wanted to know.”

  She knew no one in
the field, nor was there much of anything written about it. The fact that there was no competition, no set path, gave her the impetus to try it. The hard thing was how to justify her choice. “People said that I was reading too much into this, that I meant well, but shouldn't be projecting my own hopes into terminally damaged individuals. They said that it was bad for me, that I couldn't be a good therapist if I were so totally involved.

  “And every time I came home from college, my parents wanted more clarification. ‘Say again what you're going to do, Connie. What is it called?’ My father asked all his customers if they had ever heard of music therapy and they were as puzzled as he. Now, my mother reads stuff about my music therapy research and is proud of me, saying, ‘Hey, this music therapy stuff is really catching on.’ “

  Music therapy began in this country about 1950, when doctors going into VA hospitals found they could reach fairly unreachable people in catatonic states with music. Music therapy associations and college programs were initiated as scientists began to delve into the reasons why, when and how music helped.

  Still, as Connie points out, “When I started my dissertation several years ago, not much if anything existed in the literature on music and memory or on memory function. Everything then had to do with cellular processing. In the past couple of years, a lot of books have appeared. Brain research is now showing us that we have a lot of control over our destiny once we understand how the brain works, and how to take advantage of all these skills and abilities that we have and don't even know we have, like self-healing and Wellness and pain management, processes that don't require outside analgesics. In fact, we are learning that, through music and guided imagery, we can stimulate our body's own opiates.

  “Being here at Beth Abraham was a fortuitous circumstance,” she says, “because this place gave me the chance to work with neurologically disabled people. The full impact of music in these people's lives first hit me because of Oliver Sacks. I joined him in observing and working with the post-encephalitic patients he described in Awakenings.” The L-dopa awakenings happened in the 1960s and when she came to the hospital in the 1980s, there were very few of them left. “I was touched seeing the way he interacted with patients, taking their hand, talking softly, gently, with enormous compassion. I was working with one of the survivors, now an old woman,” Connie says. “Her tongue was moving in and out of her mouth. She was babbling. She couldn't stop her weird tics but I was sure that she knew exactly what was going on in spite of being stuck in her terribly sick body and mind. I told Oliver that I couldn't bear the way people were treating her and that I thought she knew a lot more about what was going on all around her than anyone realized. That's when he gave me her old journals to read. In them, she wrote about what it was like to be in her condition, what it was like to be spoon-fed and to have the food drip down your face, to have the staff laugh about her. She wrote that just because she is the way she is doesn't mean she has no feelings.

  “This was a momentous and defining moment. I was driven to find out how to reach people like her, how to find that part of them I could connect to. It became an obsession. There has to be some aspect of memory and personality still functioning even though the person can't exhibit this. The research I do now deals with music and memory.

  “I'd always had a lot of respect for people but I became even more aware that no matter how debilitated somebody is, no matter how removed they seem, we can't assume that they're disconnected. Maybe it's my Catholic upbringing. Every life, no matter how limited, is worth sustaining. In this work, you have to have patience, and patience is an integral part of my personality. In this field, things don't happen very quickly or dramatically, but it is obviously incredibly poignant to witness any retrieval of memory.”

  In trying to reach each patient, she explores different types of music, different rhythms, different songs. “I find out from the family if there's any musical history, favorite entertainers, concerts, whatever. And then I look for responses. I sit very close, knee to knee, and I play the accordion. I do a lot of touching. I probe to see how far I can take the person and how much he might do independently.

  “In the early stages of dementia, there might be some talking, but later, that stops and there's only music. In the initial stages, the goal is to maintain whatever memory there is, their awareness of the immediate present, who they are, some important parts of their lives.

  “People go into rapid decline, a decline that can get a lot more rapid if we don't make any attempt to reach them. The decline is not so much based on the disease itself but because nobody is giving them anything. There is a potential for improvement of some degree and a level of awareness that's still possible. It's sort of like a balancing act. You want the person to be aware enough so that they have some quality in their lives, that they're not tormented. Besides, to deny somebody any enrichment activity is probably unethical, even though there's no funding for this kind ofthing.

  “One time,” she says, “I was working with a young man in a coma. No one knew if he was responding to anything. He didn't even track with his eyes. We had no clues. He was Latino so we thought we'd try some salsa and other Spanish pop music. Well, his eyes started going back and forth. We called his mother and she said he hates that music.” Connie laughs. “We got the music his mother said he loved. Of all things, it was Italian opera. We don't know if Rigoletto did it but he came out of his coma. He's in long-term care. Who knows if he would have been locked into his coma if the music hadn't been available to him.”

  Even late dementia patients begin to recognize where they are, their agitation and restlessness helped at least momentarily. Because they don't recognize what's on their plate, they can't feed themselves and become fearful of everything. Human contact can give them a sense of safety and familiarity. “To give someone even moments of real pleasure is worthwhile for me,” Connie says.

  Over ten million Americans, mostly over sixty-five, have strokes, Parkinson's, Alzheimer's. With no medical cures, their function is immensely improved by remedial and therapeutic nonmedicai measures like art and music therapy. Music can also play a vital part in the rehabilitation of orthopedic patients, helping to restore former mobility. Often, where physiotherapy doesn't work in getting a patient walking or moving, music can.

  Music connects to the part of the brain that processes emotions. In people with neurologic damage, the higher processes have ceased to work, but the emotions are still functional and become the most salient feature of their personalities. With higher functioning people, the music Connie plays might be all improvisation, a creation of the patient and therapist, based on what symptoms the patient is presenting. This music can bring about remarkable synchronizations and en-trainments of brain function. It can stimulate and organize lower functions in the basal ganglia but it can also heighten mental functions, as in aphasia, a condition where language is lost. With physical agnosia, an inability to make sense of the world visually, music can organize that world in a way that the brain cannot without it. And patients with Alzheimer's, who are in a state of agitation and confusion because their memories and powers to organize are failing, can find some help with music, because music is fundamental in its ability to help the brain restore identity.

  “With early Alzheimer's,” Connie says, “the sense of self is still pretty much intact. I'd like to believe that it is so until the end of the disease process. It's the detection of that self, the caregiver's respect for it, that can help people have a better quality of life. If we can provide them with some sense of who they are, they can maintain some sort of connection with the world around them. In my doctoral dissertation on four women with Alzheimer's, the one thing that came out loud and clear was that they wanted human contact, that they were in need of having these relationships. They held on to those couple of minutes for dear life.”

  When, days later, I think about my first meeting with Connie and her feelings of urgency about reaching people, I begin to understand the consequences of
avoiding any person who is not easy to approach. The distance between ability and disability—between sight and its absence, a clear mind and one clouded by short circuits and corrosion of brain matter, between what is considered beautiful and what is seen as deformed or freakish or ugly—sometimes seems unbridgeable. But the reach is essential in preserving what is decent in the human condition.

  “Easy for you to say,” a friend tells me as I relate the nature of Connie's work. “I have a hell of a time facing a severely damaged person. Frankly, I'm scared.” My friend, who is a scientist well-read in evolutionary biology, tells me that he's not proud of his atavistic attitude when confronting severely disabled individuals, but that there might very well be an inherited, genetic basis for his fear, a built-in tribal response to the unrevealed threat of “the other.”

  “It's easier to reach out to some people than others,” I agree.

  “I mean it's no problem with someone like you,” he says. “You don't look blind. It's a lot easier to make contact with a cogent person than one who has trouble speaking, makes weird noises, has tremors, cognitive problems.”

  When I think of Connie's observation that most of her patients were once healthy people who got a virus or suffered head trauma or some other accident, which can happen to any of us, or that they simply got old, the abyss between us seems smaller and, while terrifying, very much worth attempting to bridge.

  “That Australian television crew,” Connie tells me the next time we meet, “came to the hospital while I was part of the recreation staff, doing music therapy half-time. About the same time, the hospital administration hired its first PR person. They'd never had anyone before who looked at our image, our outside contacts, things like that. The whole happening with our five ladies was not only remarkable for the film crew to see but also for our new PR person, who was totally amazed. ‘This is really important work,’ he said. ‘How much of this are you doing?’ I told him that this was the only group of this kind I was running because of my other job requirements. He said, ‘Shouldn't you be doing more of this?’ I said, ‘Yes.’ You see, I'd been doing it all these years and no one knew about it. So he said, ‘Let me see what I can do.’ “