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"Novelist Neugeboren has written a detailed, exquisitely painful, and always thoughtful account of his younger brother's long struggle with mental illness. [It] may bring understanding to those who can barely imagine such horrors and comfort to those who have and felt it alone."--Publishers Weekly
"An uncommon tale of brotherly love, and a passionate defense of the notion that dignity belongs as much to the mad as the rest of us."--Kirkus Reviews
Jay Neugeboren and his brother, Robert, grew up in Brooklyn in the years following World War II. Both brothers--smart, talented, and popular--seemed well on the way to successful lives when, for reasons that remain ultimately mysterious, Robert had a mental breakdown at age nineteen. For the past forty years Jay has been not only his brother's friend and confidant, but his advocate, as Robert continues to suffer from the ravages of the illness that has kept him institutionalized for most of his adult life.
Imagining Robert tells the story of these two brothers and how their love for one another has enabled both to survive and to thrive in miraculous, surprising ways. It reveals how even the grimmest of lives can be sustained by the power of love.
Jay Neugeboren is the author of thirteen books, including two collections of award-winning stories, two prize-winning novels, and two nonfiction titles. His most recent book is Transforming Madness: New Lives for People Living with Mental Illness, winner of a "Ken" 2000 Book Award from the New York City/Metro Chapter of the National Alliance for the Mentally Ill.
At 3:00 A. M., on a cool summer night--a few hours after my youngest son has graduated from high school--I find myself cruising the deserted streets of Northampton, Massachusetts, searching for the fifty-year-old man who is my brother. I have considered calling the police, but I know that if a policeman actually finds my brother and approaches him, Robert might, as in the past, panic and become violent.
My brother Robert has spent most of his life, since the age of nineteen, in mental hospitals and psychiatric wards in and around New York City. The list is long: Hillside, Creedmoor, Elmhurst, Gracie Square, Bellevue, Kings County, Rikers Island, Mid-Hudson Psychiatric Center, South Beach Psychiatric Center, and others.
Until the time of his first breakdown in 1962, Robert had been a delightful, popular, and gifted boy and young man--talented at dancing, acting, and singing, invariably winning the lead in school and camp plays and skits. He'd had a love and talent for many things, including tennis, writing, art (painting, drawing), and chess. (He was in a chess club with Bobby Fischer at Erasmus Hall High School in Brooklyn, but Fischer refused to playwith him; "'With you, Neugeboren, I don't play,' he always said to me," Robert says. Why not? "Because," Robert says, smiling, "I played crazy.") He was a good if erratic student in high school, won a New York State Regents Scholarship to college, and successfully completed his freshman year at the City College of New York.
He was, in short, a bright and idiosyncratic young man with a sense of life and humor all his own, a person who showed no signs, until his first breakdown (except for those that, looking back, any of us might find in ourselves), that such a breakdown was at all likely, much less inevitable.
Robert's diagnosis has changed frequently in the past thirty years, depending largely upon which drugs have been successful in keeping him calm, stable, and/or compliant. He was schizophrenic when enormous doses of Thorazine and Stelazine calmed him; he was manic-depressive (bipolar) when lithium worked; he was manic-depressive-with-psychotic-symptoms, or hypomanic, when Tegretol or Depakote (anticonvulsants), or some new antipsychotic or antidepressant--Trilafon, Adapin, Mellaril, Haldol, Klonopin, risperidone--showed promise of making him cooperative; and he was schizophrenic (again) when various doctors promised cures through insulin-coma therapy or megadose-vitamin therapy or Marxist therapy or gas therapy. At the same time, often in an attempt to minimize side effects, other drugs were poured into him: Artane, Benadryl, Cogentin, Kemadrin, Symmetrel, Prolixin, Pamelor, Navane ...
During these years, Robert also participated in a long menu of psychotherapies: group therapy, family therapy, multifamily group therapy, Gestalt therapy, psychoanalytically oriented psychotherapy, goal-oriented therapy, art therapy, behavioral therapy, vocational rehabilitation therapy, milieu therapy, et al. Most often, though--the more chronic his condition, the truer this became--he was treated solely with drugs, and received no therapy at all.
It is as if, I often think, the very history of the ways in which our century has dealt with those it calls mentally ill has, for more than thirty years now, been passing through my brother's mind and body.
Robert and I talk with each other almost every day, and see each other often, sometimes in New York and sometimes in Massachusetts, and though our visits are not without their difficulties (why should we be different from other brothers?), visits in my home, with my children, have invariably been without incident.
I've never seen Uncle Robert this way, each of my three children said to me in the hours before and after my son Eli's graduation. Is he going to be all right? Can I help? And then: And what about you, Pop--are you going to be all right?
Robert spent the day and evening of Eli's graduation in and out of the house, withdrawing hundreds of dollars, ten dollars at a time, from automated teller machines; buying secondhand clothes at local thrift shops; leaving trails of clothing, coins, cigarette butts, small paper bags, and crumpled snot-filled tissues in virtually all the rooms of my (eleven-room) house; going from room to room and turning lights on and off; showing me pieces of paper upon which he had written indecipherable messages while demanding that I understand what they meant; and, whenever my children and their friends arrived home, hurrying from sight and hiding.
Eli returned home from his all-night (supervised) graduation party at the local county fairgrounds at about 6:00 A.M., and Robert, whom I had not seen since we had left for Eli's graduation ceremonies at about 6:00 P.M. the night before, arrived not long after that, and ordered me to put him on a bus for New York immediately. He looked ghastly (he had--inexpertly--given himself a haircut, and had shaved off his mustache), and seemed totally disoriented: his hands and arms were flapping uncontrollably, his body was hunched over, his eyeglasses were covered with a milk-white sticky substance ("Scum!" he declared, when I asked), his movements were jagged, and he kept turning on me, ordering me around, screaming things that made no obvious sense.
Whether I did or did not reply, he became more and more enraged, telling me again and again that I wasn't listening to him, that I never listened to him, and that if I didn't do what he said he didn't know what he might do. "I want letters!" he kept shouting. "I want letters!"
At the bus stop he scurried around wildly, virtually on all fours, picking up cigarette butts and searching for money. He wore a wide-brimmed straw hat, a tuxedo vest over a T-shirt, tight white extra-short pants, bright knee-high red socks. He went to each of a half-dozen sidewalk newspaper kiosks and began putting quarters in them, taking out papers, and either stacking them on top of the kiosk or putting them in a mailbox. He went back and forth to a pay phone, dialing for information about people on Staten Island and yelling at the operator; he walked across the street to a parking lot and shouted questions at me; he wept and he screamed, and I found myself hoping that the bus would come on time (or ahead of time), that he would be allowed to board it, and that he would somehow get back to his halfway house (located on the grounds of South Beach Psychiatric Center) safely.
I had been in situations like this with Robert before--dozens of times through the past four decades--and though, as I said to my children, seeing Robert like this was not new for me, each time it happened it did still take me by surprise, and each time it happened, it seemed unutterably sad and heartbreaking.
How could it be that somebody who was so warm and loving, so charming, happy, and seemingly normal one moment--one day, one hour--could become so angry, wild, and lost moments later? And how could it be that each time it happened--no matter the years gone by--it felt as if it were happening for the first time?
Though, with the years, I've learned to cope with these situations--to be able to help me and Robert get through--and though, with the years, Robert has actually reversed the path his life had been on (despite dreadful prognostications, he had come, in the eight or nine years preceding Eli's graduation, to be able to spend more time out of hospitals than in them, and had made more of a life for himself than most people had dreamed possible), I still found myself going through litanies of familiar questions and doubts: Should I call the local police and have them take him to a hospital and deal with getting him back to New York City? Should I ask Robert where he was all night, and if he had been drinking and/or doing drugs, and if he thought he could get back to the city by himself? Should I leave my children and try to drive Robert the two hundred miles back to Staten Island? Should I call the hospital on Staten Island? Should I call some local psychiatrists and social workers I knew? Should I stay with Robert, or leave him alone? And how should I respond to his outbursts of anger, his bizarre behavior, his accusations, his questions, his tears?
What could I do, I wondered, now as ever, that might ease his pain and confusion--that might minimize damage? If he was in free fall, as it were, was there anything I could do to help buffer the fall, so that, instead of plummeting downward ten stories before he crashed, he could bounce down gently after, say, only falling a few steps? Should I say anything at all, and was there a right thing or wrong thing to say, and was there anyone I could call upon who could help get us through, or was it better to say nothing and to just leave him be?
How much of what was going on with Robert was frightening my children, or taking away from their celebration and reunion, and was it best to shield them from the worst of Robert's troubles, or to inform them in fuller detail of what was happening, and of my own fears, and intentions? In a situation like this, despite the many times I'd been here before, what I felt most of all was an overwhelming sadness and helplessness. Who knew if there was anything at all that might ease things, or make them less awful? Who knew, really, what to do?
What I did, finally--what I found myself doing--was what I've been doing more and more through the years: simply trusting my instincts, and Robert's. I found myself acting on my belief that, despite all, Robert still knew himself--even at a time like this--better than anyone else did, and that if he was determined to get back to Staten Island by himself, he would.
Robert had stayed away from my children most of the time during his three days with us, and--his innate kindness, as ever, at work--had kept both his anger and his confusion hidden, for the most part, when in their presence. Still, each of my children noticed what a hard time he was having, and each came to me and offered sympathy, and help.
When, while changing from cap and gown into casual clothes, for his graduation party, Eli asked if he could do anything to help, and I told him the best thing he could do was to go off and enjoy the party, that Robert was my responsibility and not his, Eli had replied, "But he's mine too, Pop."
I smiled. "Maybe," I said. "But today is your day. This one's on me, okay?"
My sense of the fear and humiliation (along with the logistical problems) that would result from having local agencies deal with getting Robert from Massachusetts to New York, or my trying to deal with him in a locked car for four or five hours (a week before his first breakdown in 1962, he had, while we were going seventy miles an hour on a highway, opened the car door, stuck a leg out, and threatened to jump), reinforced my instincts--to believe that the best immediate solution was the simplest one: to let Robert get back to his home by himself, and as quickly as he could.
So I did what I usually do when things get bad for Robert. I tried, gently and firmly, to be as patient and direct with him as I could (telling him, for example, that I would call ahead to his halfway house to let them know he was on his way; asking him, again, if he did, in fact, want me to drive him back to Staten Island), and, when he came near to me--and when he walked off and seemed especially lost--I put my arms around him, and told him I loved him, and talked with him about whatever came to mind--his meals (I'd packed him a lunch), the bus, the trip back, the weather.
While people waiting for the bus stared, or tried not to stare, or moved away, Robert stayed close to me and seemed to be listening: I was glad he'd been able to visit, I said, and I wished he wasn't having such a hard time again, and we'd talk on the phone that evening after he was back at his halfway house, and I was very glad he'd been able to be here for Eli's graduation and had seen Miriam and Aaron, and we would see one another again soon.
Robert navigated the eight-hour trip home--bus, subway, ferry, and bus--successfully. We spoke that night--he cried a lot, complained about the hospital and the medications, and then he was off on flights of words that, because I knew the reference points (events and people from our childhood, jokes we loved, experiences we'd been through together), seemed more poignant than strange. "I didn't embarrass you, did I?" he asked at one point. "I didn't embarrass the children, I hope...."
The following morning, for the first time in a year, and for at least the fiftieth time in his life, he was hospitalized. When I called the doctor in charge of Robert's ward and he asked what I thought had precipitated Robert's break, I said that there were some immediate causes that seemed obvious, but that the real precipitant, it seemed to me, was simply the fact of Robert's life--of the last thirty-one years of his life. If you'd been where Robert had been, and suffered all the drugs, abuse, incompetence, and pain he'd suffered, the wonder, it seemed to me, wasn't why he'd broken again, but why he hadn't, like so many others he'd known, died or killed himself or deteriorated completely.
But after I said this, I did name some of the things that had been going on in Robert's life that might have precipitated this break. There was the graduation itself, and being with family (but Robert had been in this situation dozens of times before and had had no difficulties). There were his desires and fantasies about living in my home with me in Massachusetts, now intensified because Eli would be going off to college and I would soon be living alone (but I'd been the single full-time parent of my three children for nearly a decade, and though Robert often asked about moving in with me, I'd never encouraged him, and he himself had begun saying he didn't think it was a good idea). There was the fact that, a few weeks before, Robert's best friend had been moved out of the home in which he and Robert had lived together for two years and into which Robert had been hoping to return (so where would he live now?). There was the fact that he had been out of the hospital for eleven months, and the better he became--the more alert, the more himself--the less the make-work activities of the hospital's day center interested him, and the more bored he became. There were all the feelings (of failure, envy, love, resentment) aroused by being with me and my children--seeing Eli graduate (and at the age Robert was when he had his first breakdown), and seeing us move ahead with our lives while his life seemed, still, to be going nowhere.
Though I could, as ever, talk about what I thought had caused Robert's condition, long-term and short-term, the more important question, it seemed to me (or was I thinking this way in order to give myself heart, in order to find something good in a situation that was godawful?), wasn't what had caused this breakdown, or any of the others, but what, given his life, had enabled him to survive, and to do more than survive--to retain his generosity, his warmth, his intelligence, his pride, humor, and his sense of self. This, it seemed to me, was, as ever, the true miracle and mystery.
I had, not long before, asked Robert the same questions the doctor asked me. Did he ever have any sense of what made him go off the way he did sometimes--of what the difference was, of what made things change for him, or in him? He had been silent for a long time, and then had said, "No answer."
These were, I said at once, afraid my questions might have hurt him, questions nobody seemed to know the answers to.
"So why should I know?" Robert said then. "Am I different from anybody else?"
The doctor at South Beach Hospital concluded that Robert's breakdown had been precipitated by alcohol and substance abuse. Robert had admitted that on the way up to visit me he had had a few beers and had inhaled amyl nitrite. The amyl nitrite ("poppers") was "part of the gay lifestyle," the doctor said, and was taken by homosexuals to increase sexual pleasure. The alcohol and substance abuse, he concluded, had clearly "destabilized" and "unhinged" the parts of Robert's brain that his medications--lithium and Depakote--had stabilized. The problem, therefore, was "noncompliance."
I had heard this from doctors before, and I responded with an obvious, if rhetorical question: Okay, but what was it that had caused the noncompliance? If mental illness was as debilitating and awful a condition as it seemed to be (as surely it had been for Robert), and if the medications alleviated that condition, why would anyone ever stop taking the medications, or do anything to interfere with their beneficial effects?
As my father had once put it, to a doctor who refused to continue treating Robert because Robert had stopped taking his pills, "So where, Doctor, is the pill to make him want to take the pills?"
* * *
When I visited Robert after his breakdown--on a locked unit at South Beach Psychiatric Center (a New York State facility where he has been hospitalized, on and off, for the past twenty years, and which is located on Staten Island, a half-mile or so from Staten Island Hospital), he was, as before, on isolation: living, day after day, twenty-four hours a day, in a bare room in which there was nothing but a sheetless bed and an empty dresser. This was called, by the staff psychologist, Henry Grossman, "reduced stimulation."
When I had, previously, questioned, as gently as I could, whether being on isolation, and on heavy doses of Thorazine (the medication Robert hated above all others), and not being permitted to make or receive calls, or to have visitors, might not feel to Robert like punishment instead of therapy, Henry Grossman had replied that this might temporarily be the case. "But our experience," he said, "is that in retrospect patients come to appreciate the reduction of stimulation--the limits and boundaries that have been set for them."
He had also assured me that Robert was not just locked away in a room--that every hour on the half hour, for five minutes, Robert was taken to the bathroom and for a walk down the hallway. When I asked if Robert had had or would be receiving any therapy--if he was talking with anybody in any regular way about what he was going through--Henry's reply was abrupt: "Robert cannot tolerate therapy."
This seemed to me an absurd statement--Robert couldn't tolerate therapy? You mean you can't tolerate trying to work with him, I wanted to scream. Why are you a therapist if you don't want to work with patients, to listen to them? And when will Robert be able to "tolerate" therapy--when he's well?
But it was the same old story, and I was in the same old quandary: if I complained too much, or confronted Robert's health care workers with their inadequacies, or sent off the long letters I often composed in my head (to The New York Times, to hospital and state officials, to doctors, etc.), I feared they would only take out their resentments of me upon Robert--that they would (as had happened before) simply talk with me less, care for Robert less, and/or ship him off to a ward where he would receive even less attention (and more drugs) than he was now receiving.
Robert had been here, in this ward and ones like it, and in worse places, before. (One time at Mid-Hudson, a forensic facility, when they had him in a straitjacket for a long period of time, I remembered him telling me, he asked for a smoke, so he could let the ashes fall on the jacket and set himself on fire. He succeeded. After the aides got him out of the straitjacket, one of them took him to the basement, where he beat him up and warned him never to do what he had done again.)
Now, on a warm summer day in July of 1993, because of my visit, Robert has been granted courtyard privileges, and we sit at a picnic table by ourselves. He opens the bag of food I've brought him for lunch, but his hands are shaking so badly that when he tries to eat an egg salad sandwich, the egg salad sprays everywhere. He is frustrated, apologetic, embarrassed. I talk with him easily, we joke back and forth, and after a short while I scoop up pieces of egg, tomato, lettuce, and bread, he takes his false teeth out, and I feed him with my fingers, placing the food directly into his mouth.
When he cannot tolerate his tremblings any longer, he walks away. He calls to me, and I go and sit next to him on a different bench, and we talk about the ward, and the doctors, and my trip down, about Eli's graduation, and the floods in the Midwest, and our cousins. We have more than three dozen first cousins (both our parents came from large, extended families), and I fill Robert in on who is where and doing what--our cousins, and the children of our cousins, and the children of our cousins' children--and which relatives I've seen or heard from. Suddenly Robert turns, leans down, and, with great gentleness, kisses the back of my hand several times, after which he begins weeping.
"Oh, Jay, Jay," he cries softly. "They're barbarians here. Barbarians, barbarians! Pavlovians ..."
He presses his mouth to the back of my hand, and I take him to me, hold him close. A few minutes later, we walk around the courtyard, and then he tells me that he likes to walk back and forth, in a diagonal, between two trees--they are about ten yards apart--and count the number of times he can do this. So we walk back and forth together, and I sing to him, and then he joins in--putting his arm around my waist, leaning on my shoulder--and we go back and forth again and again, loudly singing old camp songs, in English and Hebrew, that we remember from our childhood.
He eats some more, and then we walk again, side by side, our hands clasped behind us, mimicking two diplomats, trading stories and news. He clutches his dentures in one hand, a piece of bread locked in their bite, and when he puts the top bridge back in his mouth, I say something about his being on uppers.
He starts giggling, inserts the lower bridge.
"And now you're on lowers," I say, and add that I don't understand why, since he's on uppers and lowers, which probably balance each other, the hospital has to give him any other medications.
"It's how they make their profit," he says.
When I call Robert from Massachusetts after our visit, he is flying--repeating everything he says twice, rambling on about people living and dead as if they were there with him on the ward, thanking me for visiting him and for the things I brought him, giving me lists of all the foods he has eaten and all the things he wants me to send him, mixing these lists with references to scenes in movies and to scenes from our childhood, talking about Adlai Stevenson and Bill Clinton (who is, he says, his son) and how the whole country is in a very big depression--and every few seconds he tells me that he has to hang up, he has to hang up (though he never does). And then, when he finally takes a breath, and I tell him I love him, his voice suddenly drops and slows down, and he talks to me in a way that is totally natural.
"Oh, Jay," he says, "don't you see? There's nothing better in my life than what's happening! You don't know. You don't know, Jay. You don't want to know ..." He weeps freely, keeps talking. "This life of working here and there in hospitals, or as a volunteer, and being here now, and doing nothing--isn't there ever going to be anything better for me? Please get me out of here, Jay. Please, please ..."
When, later in our conversation, I tell him that I called him the day before but nobody could find him, he asks me what I called him, and when I say, "I called you my brother," he laughs, says, "That's an old one, Jay. That's an old one--but listen, I'm going to switch the phone to my good ear, all right?"
"There," he says, a few seconds later. "Now can you hear me better?"
Moved as I am by Robert's situation and his life--and his plea for a life different from the one he has--I find, after our visit and our talk, that I am feeling relieved, and, even, mildly exhilarated. (I am also feeling exasperated, yet again, with the treatment, and lack of treatment, he receives from the staff; when I talk with his new prescribing psychiatrist, his fourth since his hospitalization, I discover, for example, that this man--"So why are you calling me?" are his first words to me after I identify myself as Robert's brother--has been prescribing and changing Robert's medications for a full week without having spoken with or examined Robert. When I complain about this to a part-time staff psychiatrist who has previously treated Robert, she is appalled, though not surprised.)
But I am feeling better about Robert and his situation because the truth (I shrug when I realize this, as if to say to myself: What can I do? That's the way it is) is that when Robert and I are together, whether in my home or on his ward, whether on the West Side of Manhattan (where we lived next door to each other in the mid-sixties, during his first year out of Creedmoor), or in Atlantic City (where, six weeks before Eli's graduation, Robert and I went together for two days, at his request, to celebrate his fiftieth birthday), we're happy. Not always, and not without a pervasive sense of loss and sadness, but happy to be with each other, no matter the context, because it seems good, simply, in an often frightening and miserable life, to be known--and to be able to be near the person who knows you and is known by you.
During the weeks that follow Robert's hospitalization, we talk regularly, and I visit him and send notes and a few small gifts, and whenever we talk, Robert asks about each of my children--his niece and two nephews--and though our talks sometimes last for less than a minute, and though sometimes he is angry (at doctors, at me--at life!) and sometimes sad, and sometimes high--and though sometimes I am nearly swept away by grief, from my sense of all that he senses his life has become and has not become, I find, strangely enough, real pleasure--as ever--in these talks and in our time spent together.
This happens not only because I know Robert's patterns, if patterns they are, fairly well, and know that once his sense of humor returns (and once he begins talking with me in direct ways about his feelings and needs), his recovery will follow--that he will be back before long, for better or worse, in the "real" world most of us live in--but simply because, for better or worse, our lives, in a crucial time for each of us, have once again been joined.
In a few months, I think to myself, I'll drive my youngest son, Eli, out to start his freshman year in college, and then I'll return home and, for the first time in more than two dozen years, I will be alone. And I realize, to my surprise, that this prospect, if intermittently, has been depressing me. I have become so habituated to having my children with me all these years--so used to the simple sharing of the infinite complexities of any hour or day of family life--that when friends ask what I expect I might do after Eli is gone, I find myself going blank. (The habit of parenting, and of parenting alone, is a habit I love, in part, I later think, because it allows me to believe, even in the most difficult times, what I sometimes fear is not so: that I am, in fact, useful to others, and that, because of this, my life matters.)
I've seen my three children through these years, and though I did so without a partner and they did so without a mother (she left them and moved away, definitively, in 1986), and though the four of us have had our hard times (drug problems, suicide attempts, depression), we've all gotten through somehow. My daughter, just graduated from Scripps College, in California, has begun work in Washington, D.C., as administrative assistant to the director of Habitat for Humanity International; my son Aaron is driving across the country with a friend, to Albuquerque, New Mexico, to begin his second year of college; and Eli is about to begin his first year at Ohio University's School of Fine Arts.
In a few months, as in the past, I assume, Robert will get out of his ward and return to his halfway house, and if things go well there, he will move from the halfway house into a supervised apartment, and we'll go to Atlantic City together again, and, my on-site parental responsibilities now diminished, Robert and I will see each other more frequently. We'll talk and laugh and trade jokes, argue and complain and become irritable with each other, reminisce and make plans and go on trips--and he'll gradually tell me, without my asking (as he has already begun to do), about what he did and where he went on the night of Eli's graduation, and that too will become part of the history we share.
And the more I know about him, and the more time we spend together, the more I'll wonder, as ever, about how he came to be who he is and to have had the life he's had. What continues to surprise, though--but why?--is that the more I know Robert and know about him, the more I'll continue to want to know, and that this will only, as ever, increase for me, not the sadness of his life, but its wonder.
Several weeks after Eli's graduation, while Robert is still on isolation at South Beach, I come across a full-page advertisement in The New York Times sponsored by NARSAD (the National Alliance for Research on Schizophrenia and Depression), an organization founded by the four most prominent mental health groups in the United States (the National Alliance for the Mentally Ill, the Schizophrenia Foundation, the National Depressive and Manic-Depressive Association, and the National Mental Health Association), that talks about "the many urgent scientific projects that are paving the way for better treatments and the cure we all hope for."
Suddenly, all the years of Robert's life--the breakdowns, the treatments, the horrors, the frustrations and failures and hopes abandoned; images, memories, nightmares--seem to take up residence within my mind. The cure? I want to scream. The cure?
"New hope of a breakthrough cure is on the horizon," the ad proclaims, "as we start to identify the genetic markers that cause depression."
The ad sets forth the current and conventional wisdom about mental illness and (especially) depression: its symptoms, the suffering it brings, the numbers of people afflicted ("In any six-month period, 9.4 million Americans will suffer from depression ..."). What the ad says echoes what I've read in most literature put out by mental health professionals, organizations, and agencies: that mental illness is a "biochemical illness" and a "no-fault biologically based brain disease." (Thus, for example, the former director of the National Institute of Mental Health is quoted in the organization's newsletter, the NAMI Advocate, as having presented research at the 1993 NAMI convention which "establishes--irrefutably and unequivocally and forever--that mental disorders are brain diseases." And the president of NARSAD begins a November 1994 letter with the following: "I am thilled to report progress in the search for which you and I pray--the search for the magic bullet for schizophrenia, depression and other severe neurobiological disorders.")
Surely, thinking of mental illness in this way--believing that biology causes it (in the same way it causes cancer, diabetes, or heart disease, illnesses to which it is frequently compared), and that nobody's to blame ("Remember this is a biochemical illness," the National Depressive and Manic-Depressive Association states in each of its publications. "It isn't yours, or anyone else's fault")--does enormous good: it reduces anxiety, stigma, and guilt; it inspires hope; it allows for increased coverage under (some) insurance plans; it provides (through organizations such as NAMI) forums and practical assistance for families; it enables useful legislation and research, and so on.
What it does not do, however, is to deal directly with the major fact of mental illness for those who suffer its larger devastations: its generally long-term chronic character and how this is experienced, as on Eli's graduation night, by the mentally ill and those who care for them--for those who must cope, over the course of a lifetime, with a condition which invariably, by its insidious, unpredictable nature and course, tears families apart, and for which condition, most of the time, there are no solutions, long- or short-term.
Robert and I have been hearing talk about "breakthrough cures" for more than thirty years now. First it was electroshock, and then it was psychoanalytically oriented psychotherapy, and then it was insulin-coma therapy, and then it was family therapy, and then it was the new range of antipsychotic drugs, and then it was megadose-vitamin therapy, and then it was lithium therapy, and then it was anticonvulsant therapy and then it was clozapine and risperidone...
And for more than thirty years any questions (or reservations, or complaints) I've had about these forms of treatment have been met, by and large, with the following response from Robert's doctors: We know more than you do about Robert's condition, and what we are doing for him is the only thing that can be done, and if you don't encourage Robert to obey our rules, you will be doing him harm.
Thirty years ago, my mother (a registered nurse), in her helplessness, was crying out, again and again--after virtually every hospital visit (and there were often five or six visits a week), "Some day they'll discover it was all chemical--you'll see! Some day they'll discover it was all chemical...."
But eight years after Robert's first breakdown, when she was sixty-two years old, she left Robert in New York and moved to Florida. "I've done all I can do," she said. "Let the state take over. You be in charge from now on, Jay--I just can't handle it anymore. Nobody knows. Nobody can know what it's like to have a mentally ill child. Nobody! It's worse than death...."
What upsets me in the New York Times ad--what upsets me whenever I hear language about breakthrough cures and genetic markers and brain disease and new miracle drugs ("the magic bullet!")--is not the possibility that Robert's condition is chemical (which it surely is, in part), but the belief so many have in its corollary: that if the condition is chemical, it can be corrected with chemicals. How easy it would be for everybody if there were chemical causes and chemical cures! How free of responsibility we might all be then....
But even if we find cause and cure, what then do we do with the life lived, and the history--and fear, and shame, and doubt, and despair, and sheer misery--that has accompanied thee life? If behavior and feelings can change the chemistry and patterns of the brain (the principle of neural plasticity--e.g., the feelings and physiological changes in athletes, musicians, stockbrokers, writers, artists, and others when in in tensely productive periods), just as chemicals can change behavior and feelings, how can we know which is cause, and which effect?
The instant I see the words about breakthrough cures, and read about how NARSAD has provided financial support to 315 doctors and scientists in seventy-eight leading universities, medical schools, and research institutions, what I also see, but more vividly, is my brother, in a room by himself, lying on a bare mattress, hour after hour and day after day, doped up, groggy, and trembling from medications, fear, and loneliness.
In a realm where the relation of mind to body remains so complex and mysterious--where, still, we know so little (the evidence concerning organic brain substrate for gender differences, for example, is far more convincing than the evidence of an organic basis for schizophrenia, yet most of us take it for granted that male and female brains are more similar than different, and that what differences exist are largely socioculturally-determined)--why, again, such a fierce belief in an exclusively neurobiological view of mental illness, and why so much time and money spent in the search for chemical and organic causes and cures, while back on the ward patients languish and die for the simple lack of human attention to their ordinary, daily needs?
(In what editorial writers, politicians, and mental health advocates praise as "landmark legislation," and an economic "boon" for the mentally ill, New York State, early in 1994, passed laws intended to reassign, over a five-year period, an estimated $210 million--savings from the closing of mental hospitals and the discharge of patients--to community mental health services. When I read about how dozens of mental health organizations worked to bring the bill to reality, and of how thrilled they, along with the governor and other politicians, are with the results, I note that this sum, which may someday be expended for the benefit of tens of thousands of mental patients over a period of five years, will come to less than what a single drug company spends, on average--$231 million--to bring a single new drug to market.)
For even if we do one day separate out the gene or the neuron that proves to be the cause of what we decide is this or that species of mental illness, what, then, will we do about the life that has come before and will continue after the moment of diagnosis and medication, and of how the fact of having this condition has affected an individual's history?
Hope and research are fine, and genuine gains have been made. Hundreds of thousands of human beings, plagued by various forms of madness--mania, depression, hallucinations--have, thanks to medications and psychotherapy, been able to lead productive and ordinary (and sometimes extraordinary) lives in the world outside mental hospitals. But hundreds of thousands of other human beings, like Robert, despite all forms of treatment and medication, continue to lead grim lives of madness, misery, and despair.
Medication and research are fine, I think, but meanwhile, back on Robert's ward, he has to sneak out of his room to telephone me, and his doctors rarely call me to inform or confer, and the only link to the outside world for thirty or so acutely psychotic patients is a single pay phone. Meanwhile, back on the ward, Robert has been forgotten and abandoned by virtually everyone who knew him (despite all the friends and relatives we have living in the New York City area, Robert has, in the last two decades, received fewer than a half-dozen notes or calls from them). Meanwhile, back on the ward, important messages don't get through (thus, when Robert, for the first time in his life, threatened suicide, and I informed one of the nurses, and I called back a few days later to speak with Robert's doctor, I discovered the doctor had never been in formed of Robert's threat). Meanwhile, back on the ward, when Robert breaks a tooth, it takes more than three months for him to get his dentures back, during which time he must eat with his gums. Meanwhile, back on the ward, the major activities are TV and card games, the staff is outnumbered and overworked, the refrigerator is padlocked, and the only time patients can get snacks is when an aide unlocks it twice a day at "refrigerator time."
As it was, for the most part, thirty years ago, I think, so it is now: the little that passes for therapy is simply reward and punishment done up, if at all, in the guise of crude behavior modification programs (smoking "privileges," courtyard "privileges," grounds "privileges," phone "privileges") whose aim is nor enhancement, but containment and neutralization. As ever, custodial needs--getting meals and pills out on time, minimizing disruption and noise--take precedence over human needs. In the world Robert lives in too often, ordinary habits and idiosyncrasies (sloppiness about clothing, loud talking, hostility toward roommates) become psychological deficits for which one receives demerits, and worse. In the world Robert has been living in for too many years, model patients seem not very different from model prisoners.
At least, I say to Robert during one conversation, they don't use straitjackets anymore, and when I say this, we both laugh, and talk about the time he asked a friend visiting him at Creedmoor if she could take his dirty clothes home for him and get them washed. The friend took Robert's laundry bag to a Chinese laundry and starred removing the clothes, only to find that mixed in with the dirty socks and underwear was Robert's straitjacket.
"In the old days it was straitjackets and wet sheets and electricity," Robert says, "and now, I guess, it's isolation and injections. "
A few weeks before Eli's graduation, I had asked Robert why he thought it was that he had survived when so many others he knew, from Creedmoor and Mid-Hudson and South Beach and Hillside, never got out, or killed themselves, or deteriorated to the point of no return.
"First of all," he joked, "I realized that God is black and that she loves me."
But really, I persisted: had it ever occurred to him to wonder why, despite all he had been through and all the drugs and therapies that had been poured into him, he had not gone under--why he was able, more than three decades after his first breakdown (when he tried to kill our father; when he hallucinated extravagantly; when he believed he was being taken, by ambulance, to my funeral; when he tried to chew his tongue out of his mouth; when he was straitjacketed and shot up with large doses of Thorazine; when he had catatonic seizures), to make a life for himself that was so much better than often, during these decades, seemed likely?
"Well, I had wonderful parents!" he exclaimed. He laughed, then was silent for a while. When he spoke again, his voice was warm, thoughtful. "I just wanted to survive and persist," he said. "That's all. And--I don't know--but it's like Faulkner said in the speech he made, for the Nobel, remember?--I wanted to endure somehow. I never really wanted to stay on the wards, but I'd get there and then the minute they locked the door on me, I would think, 'Oh my God--I've got to get out of here!' But then I'd throw fits and stuff.
"And also," he added, smiling, "because my brother didn't want to keep visiting me in hospitals."
Excerpted from Imagining Robert by Jay Neugeboren Copyright © 2003 by Jay Neugeboren. Excerpted by permission.
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Posted December 26, 2000
The only problem I had with this book was sentence structure, spelling and grammar. Which, I believe I would lay on the publishers for not correcting these prior to publication. The book is truly insightful into the world of mental illness and its' affects on family members. While I lean more toward natural healthcare I can truly understand and weep for Jay and his families frustration in the medical fields 'promises to cure'. However, the most outstanding quality of this book is the continued love Jay has for his brother. I found the lifetime choice to stay close to Robert and continually monitor, checkup and even ruffle a few feathers in search for help for Robert an endearing and touching story. I highly recommend this book.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.