A Matter of Dignity

by Andrew Potok

  When I first began talking with Jay, he had just come back from Israel, where biblical brother themes haunted him. Cain and Abel, Jacob and Esau, Joseph and his brothers, Moses and Aaron, David and Jonathan, the complexities of love and hate, of envy and affection, were everywhere. “Though the brothers theme is a large presence in my life, it took me twenty years to finally write Robert's story, though I've used some of this material in my fiction. Since I'm a writer,” he says, “I'm going to use all that I know.”

  “Artists aren't well known for being caregivers,” I tell Jay, knowing it well from my own life. “What made you such an exemplary one?”

  “I have a craving that's never been satisfied,” he says. “It feels that if I do a good enough job taking care of Robert and my children, someone will come along who will do the same for me.” He laughs at this confession. “I love Robert and I'm a person who, for ethical and cultural reasons, believes in taking responsibility. But I would cut through all that obvious stuff to say that my impulse to caregiving and nurturing of Robert and my children comes from my desire to give to others what I never got. There's a deep wound in me for not having had unconditional love, which I'm convinced should be every child's birthright. I know what it feels like to be abandoned, to be left hanging, to not be appreciated when you need appreciation, comfort and care. In Robert's often frightening and miserable life, it is good to be known, and Robert and I know each other better than anyone else in the world knows us. I would especially not want Robert, who is so vulnerable, to be lacking these things.”

  He sometimes wonders if his own survival has been bought with Robert's madness, if someone had to pay and it just happened to be Robert rather than Jay. Searching for answers back there, he recalls a litany of awful possibilities, their parents’ own brand of insanity, the use of the brothers as allies for one parent or the other, but there is no answer, no gene or obvious early incident, no telling why Robert, why not Jay, why not one or another of us who come from our own brand of family madness to face a cold world alone? In some lives, abuse, neglect, abandonment, childhood memories of parents quarreling, beating on each other or the children, all the possible horrors of family, lead to big-time payments throughout life, a continuation of abuse, spoiled and wasted lives, years of psychiatric horror. Others who emerge from the same circumstances exploit the madness, turning it into less antisocial, more productive, even artistic drives.

  Given my own experiences of war and displacement, I don't know why I chose or happened to become the nice boy who adopted a numbing strategy to get through, while another child might have more appropriately adopted rage and violence, some kind of acting-out rebellion. Like Jay, having had only bad models of family life, I have no idea what prevented me from allowing my nightmares to take over, from hearing voices, from slipping away from sanity.

  Even though there is a huge difference between sporadic brushes with depression and severe, chronic psychiatric illness, the one time I landed in the psychiatric ward of a hospital, panicked about blindness and obsessing about loss, gave me some indication of the utter impotence of being that kind of patient, ashamed of being there. Though there was nothing romantic about it at the time, and as terrifying as the panics and obsessions then were, time has allowed the experience to become tinged with irony, even farce.

  At the time, overwhelmed by waves of unbearable darkness, I groped my way to my desk, got on my atheist knees and prayed. I put my head on the swivel chair in front of my computer and, bathing in my hypocrisy, I begged for help. When none came, hyperventilating, I picked up the phone and called Bruce. “Give me an aphorism, a maxim, anything,” I begged my friend, who had survived his own brushes with madness.

  “Breathe into it,” Bruce, now a yoga teacher, said. “It's moment to moment.”

  “Bruce, I'm smothering.”

  “Smother,” my friend repeated, “sssmother,” he said, rhapsodizing on the connection as he sometimes did with his favorite etymologies. “Spirit, conspiracy, breath, breathing together,” Bruce said in capital letters. “One day at a time,” he said.

  Ed, a poet, called. “I just have a second,” he said, “but I want to remind you that yours is a spiritual crisis, an existential quest for soul. Don't lose sight of that. Remember you're a writer. Another writer would kill for the opportunity to live your anguish right now.”

  In my hospital room, a nurse frisked me, then looked through every bag, making a pile of my wallet, nail file, nail clipper and a penknife. Even though I understood the absurdity in their effort to disarm me, I was able to forfeit rights to myself by creating a certain distance between me and them, a space for irony, self-mockery The nurse next wanted the couple of Xanaxes I carried everywhere. Deep inside my pocket, she found and confiscated a Turns.

  I settled into a chair to answer questions, exuding sincerity now, a will to please. It felt like my book tour. I was full of charming, sober, cynical observations about my condition, about life. “I've never been hospitalized before,” I boasted. At my age, after all, this was a reason for congratulations. “I try to keep myself in shape,” I said. “My years are just a number.” I waited for some sort of appreciation but no one spoke. What did they want anyway? Joseph Heller? Robert Lowell? They left my room.

  I looked for my Talking Book machine and my tapes. I didn't want to think, just to listen to a chirpy Dawn Powell novel. After a few minutes of The Golden Spur, I hungered for Kafka or Dostoyevsky or Styron's book on depression. I craved a story of a man turning into an insect, then dying from the sheer neglect and hatred of his loved ones.

  Nurses brought me sleeping pills and antianxiety pills, an-tidepressants and lithium, in tiny paper hats. I took it all, hoping that I'd be a candidate for electricity. I wanted my brain recircuited, numbed, fried. Whatever the logjam of wildly firing neurons, I wanted them zapped, excised, made into a heap of ashes.

  When the whole ward met daily with our “team,” the psychiatrist lectured about the importance of our meds, then asked each of us to set goals for the day. That night, unable to sleep, I found the nurses’ station. “You're in the right place,” Nurse Sandy said. “You'll be well taken care of here. You're safe. You won't harm yourself.”

  “I wouldn't have done that,” I told her. “My threat was a call for help,” I said from the book of suicide cliches.

  “Do you want me to bring you some material about grief? Loss is difficult,” she said, and I wanted to marry her right then and there, Joseph Heller and I both falling in love with our hospital nurses. “I'll read you the stuff on grieving when I'm off duty,” Sandy whispered.

  Though possibly of some use, the shotgun administration of medication also turned out to be powerfully destructive, leaving me with years of side effects. The music therapy and the yoga were boring if not insulting, the sessions with the team vacuous. But Nurse Sandy taking the time to talk to me almost every evening for two weeks helped give me back my life.

  And as for my friend Bruce, his advice was wiser than I'd thought. No matter the high-tech interventions, it all boils down to just getting through it one day at a time. And as for Ed, there turned out to be a lot to write about.

  In Transforming Madness, Jay quotes Moe Armstrong, a patient turned advocate. “They won't pay people to talk with us and it breaks my heart,” he said, “low-tech solutions such as talk being infinitely preferable to high-cost, high-tech medication.” A veteran of every antipsychotic medication, he maintained that medication is only the beginning of what works. People with psychiatric disabilities helping others with the same problems—that seems to be missing. “We are a people with a history,” Moe said, “we are a resource to the world. Because our lives and our brains work differently from those of so-called normal people, we can enlighten others about the human mind and the human condition.”

  Moe doesn't go out after dark for fear of confusing the reality of the streets with the hallucinations in his brain. When he's alone in his apartment at night, it's only when his dog doesn't
bark that he can be sure that the voices are in his head.

  When I was young and feared that my art was banal, uninteresting, the lack of madness in my life seemed the obvious reason. Back then, I flirted with insanity as if it were a sexy and romantic alternative to boredom, a way one could choose to be as an antidote to the good behavior required by my family. Being untouched by obvious pathology felt like being exposed as a pretender. An artist, I knew, had license to be outrageous. Society was willing to overlook his vulgarity, paranoia, obses-siveness, his monstrous ego. Even though the history of art is populated by as many bourgeois, anal types as wild, unruly desperados, my notion of creativity was defined by self-absorbed maniacs. And I thought I understood why some seriously ill artists, especially those diagnosed as bipolar, refused to take their lithium, choosing the horrors of their deep depressions in order to keep their incredible manias intact.

  But my fantasies of romantic madness had no resemblance to the pitiful, mundane mental illness in those hospital rooms. The lives of most of the people in my group were marked by poverty, and, having been readmitted over and over again, most were certainly not an advertisement for the help offered. Still, human contact in the form of witnesses or fellow sufferers or experts in the use of one therapeutic technique or another, plus medication, often relieves the terrifying demons that plague us.

  When I tell Jay about my early romantic views of madness and art, he says that he doesn't subscribe to any of this neo-R. D. Laing stuff that ennobles the mad as prophets. “It's a wild view of madness,” he says. “It's grim, terrible garbage.” He himself is driven to deal with his fears of insanity by writing clearly and lucidly. “This is crucial for me,” Jay says, “though sometimes I wonder if writing is not as insane an enterprise as Robert's madness. I wonder about my intense desire to make sense of life through words and stories, along with the violence and madness I sometimes conjure up in my books. Madness plays somewhere around the edges of my concerns as a writer in my desire to be free. I have always envied Robert his lack of censoring devices. Whatever goes through his mind comes out. This is a great freedom if you're not in the life he has, in which case it becomes a terrible enemy. So I'd like to be freer imaginatively, to follow a thought wherever it will go. The other thing is that thoughts of madness have made me affect a very plain style, an effort to avoid all confusion. I don't want there to be the kind of madness that makes us lose our way. If I can find the right thread, the right word to name something, I can relax.”

  It is quite obvious that Robert's life would have been a lot more threadbare without Jay. “Robert knows that he can count on me no matter what,” Jay says, “and that gives him a little purchase on this world.”

  Jay has overseen all of Robert's moves, all his therapies. Over the years, he has pleaded with administrators in the hospitals and in state government, writing letters, lodging complaints, reasoning, begging. Through all this, the brothers have talked almost daily, even though the timing of telephone calls has had to be carefully planned to avoid Robert's smoke breaks. If they didn't, Robert would scream, “Never call at smoke break again, Jay!” and slam down the phone. “Funny thing,” Jay tells me, “but they've found that nicotine is not only calming to many schizophrenics but it counteracts some of the ghastly side effects of the medications.

  “Still,” Jay says, “I'm not the only variable. If a person other than Robert had someone like me, there's no telling what would or wouldn't have happened. Robert has a very strong will, which some psychologists would say is from identification with the aggressive mother and that's what keeps him going, but who knows? If he had less will, I might not be making a difference. He doesn't have a great life but he has a life. I certainly have been instrumental in that.”

  I ask if his closeness to Robert has taught him other lessons.

  “Among many other things,” he says, “I've become a better parent. I've learned patience. I've had to hold offbeing offended or enraged or whatever the feeling of the moment. When Robert gets angry and says vile or stupid things, I could pummel him, but I've learned how to draw limits because I don't want to let him abuse me, which wouldn't be good for either of us. I don't want to empower an unhealthy part of him.

  “A while back when we had supper together, he was at me the whole time, the way he often is. It may be pleasant for him but it's never easy. He's constantly asking if it's okay to go to the bathroom, to use the toilet paper, to turn the light on, to sit here or there. Finally he looks at me and says, ‘I'm very demanding, aren't I, Jay?’ I said, ‘Robert, you are very demanding.’ So he starts about his fiancee Sophie, an elderly woman who was his neighbor when he was in a group home on Staten Island. He's telling me how they're going to get married someday and I say to him, ‘But, Robert, you like guys.’ ‘Jay, that's just for practice,’ he says, and we both crack up. As you can see, it's not all giving. I get a lot from Robert. He's charming and he's exhausting but he has a life. This is a miracle.”

  “How different would it be being a parent rather than a sibling of a schizophrenic child?” I ask him.

  “I think it's enormously different. It's much easier being a sibling,” Jay says. “I used to worry about my own kids. If something were seriously wrong with them, it would have been very hard to extricate the guilt. The responsibility would have been a lot more intense. I can only begin to imagine the feeling of helplessness and the fear of having done something wrong or of not having done something right. You're only as happy as your least happy child, and if you have a child who is never happy it must make for enormous sadness.

  “In the case of the mentally ill guy who pushed a woman into the subway tracks, everyone was sure that it could have been averted if caring parents had prevented him from leaving the house or had just loved him more. I disagree, because by virtue of being the family, you're already incredibly overburdened. What the family needs is a system that will support it and help deal with the child.

  “Some parents walk away from kids, some brothers from brothers. I tried to survive by differentiating myself from Robert but the feeling of responsibility will never go away. For instance, I put aside money for him from the book. It's his money but it was in an account in my name. I've signed it over to Robert and he's going to work with the network of people who will assist him to learn how to become responsible for his own finances. What a lovely moment! Robert's my brother so I don't want to be in a position of a parent. When other people help take care of him, this allows me to be just a brother, which is what I like. I never have to fantasize about the Robert who might have been. Who knows what that would be like for a parent?”

  “As far as being able to be only as happy as the least happy child,” says Mona Wasow, the mother of a forty-four-year-old schizophrenic son, “if I lived my life that way, I would be a constant basket case. It's a never-ending, unresolvable grief. It's below the surface and it doesn't, thank God, keep me from having a good life. I'm not that wrapped up in it though the sadness is always there.

  “My David's life is a misery but I've been feeling relatively good about him for the past several years. He has his first job, he's kept it for two years now, he's never late, he never fails to show up. But what he's doing is washing a stove in a restaurant. If this were one of my other kids I'd be devastated. Then the other thing I try to do is to focus on how much David has accomplished with his music, his pottery and his staying a nice person. It's all relative.

  “One of my coping modalities is counting up the statistics for developmental disabilities or extreme physical disabilities, to say nothing of drug abuse. You've got conservatively one out of four families in misery. The thought cheers me. I tell myself that I was not singled out for damnation. There are lots of other miserable people. I comfort myself with that.”

  Mona Wasow has, for many years, been heading up the concentration in severe mental illness at the University of Wisconsin at Madison. Almost all the students she's been teaching will end up working with the severely mentally ill
— including the homeless.

  “Who do you think most students in the helping professions want to work with?” Mona asks. “It's people like themselves, the worried well. And after that, cute little children. And who is at the bottom of the list? People with serious mental illness. And after that, old people.” Mona works hard at interesting her students in working with just that shunned and terribly underserved population. Her program emphasizes values, knowledge and skills. “A deep respect for these people can only lead to compassion and commitment,” Mona says.

  Her students spend a great deal of time doing frontline work with the seriously mentally ill elderly, including those who are homeless. Her students are taught to reach into the lives and spirits of disabled men and women—people who do not get cured, who sometimes get worse, who may try to avoid them, who might die—and they learn to do this work without judgment or fear. “There are human beings behind these crippling disabilities,” Mona says, “and most of them are longing for human interaction. Good books, classes, field placements help, but I suspect that it's students’ contact with elderly people who have serious mental illness that does the most profound teaching.”

  According to Mona, there is a direct connection between a person's inability to come to terms with what she calls “the random hit of catastrophic events” and her inclination to enter the “helping field.” “I do the work I do totally and entirely because of David,” she says. “Why else would one do it? Surely there are better things to do. But some of us have no choice. I do it to cleanse myself of guilt, of anger, of the immense sadness that accompanies having a mentally ill child. For those of us who don't have conventional religion, we struggle looking elsewhere to find meaning in it.”