Two years older than I, Marshall had been a standout student in high school, admitted to Berkeley for college. The only potential trigger for what happened was his use of marijuana around that time, but who didn’t smoke a lot of weed back then, especially in California? Yet during the fall of Marshall’s freshman year Paul received a call from the UC Berkeley hospital, stating that Marshall was a patient, having begun to hear voices and exhibit wild behavior. He didn’t last a year at Cal, as his psychotic symptoms and diagnosis of paranoid schizophrenia persisted. Over the years he’d drifted up and down the state, sometimes in mental hospitals but often on the streets, including the decrepit windmills at the end of San Francisco’s Golden Gate Park, where he decamped for a time.
He was now living near downtown Long Beach, in a board-and-care home, the formal name for California’s for-profit flea-pits set up in response to the closing of most mental hospitals. The low-slung, decrepit building looked suspiciously like an abandoned Motel 6, with emaciated palm trees hovering over the lonely courtyard. Relentlessly smoking cigarettes, desperate men and women languished in their rooms or paced the grounds, heads down, many showing the disfiguring facial spasms of tardive dyskinesia, a movement disorder marked by grimaces, lip-smacking or -pursing, and excessive blinking. This syndrome sometimes follows the long-term use of antipsychotic medications. These medicines can often make a major difference by reducing hallucinations and delusions, but there’s a risk of developing this side effect, which is itself stigmatizing because of its marked distortion of facial expressions and body movements.
At most board-and-care facilities, attending psychiatrists rarely showed up, and medication monitoring was poor at best. So much for California’s enlightened policies of deinstitutionalization.
Marshall hated taking any medications, although when he stayed on his Haldol—a more potent cousin of Thorazine and Mellaril—his strange ideas and delusions seemed to clear somewhat. I walked him to my car and we drove to a fine beach on the other side of town. He had trimmed his usually unkempt hair and beard, but there was something in his eyes that didn’t look quite right. We talked about life at his facility, his brothers and his sister, anything I could think of, but I was carrying the conversation. Every few minutes, his voice rose in pitch as he began a soft rant, a rapid mutter of half-sentences, his eyes rolling up in his head and his words spouting in an endless loop: “God the savior … Paul my father, not my father … Steve here, Steve not here … God the savior…” As he spoke, every muscle in his body was rigid.
This is chronic schizophrenia, I told myself.
I talked more with Paul whenever I could. He told me that over the years he would drive up to Berkeley and San Francisco, endlessly cruising Telegraph Avenue or Market Street in his car, hoping to catch a glimpse of his lost son. “The worst was when he came back down here after he couldn’t remain in college,” Paul continued, referring to the end of the sixties and beginning of the seventies. “‘This medication will cure him,’ one psychiatrist told us. And the psychotherapists! One of them said to me, Steve, if you can believe it: ‘Just give me a year with him, a few sessions a week, away from his family. I’ll cure him of any schizophrenia.’”
As Paul lamented the audacity of the mental health professionals he and his family had encountered, I murmured sympathy but hid my rage. Why was it still all-biology or all-psychotherapy? Hadn’t anything changed? Who were these modern-day versions of the know-it-alls who were so certain that Dad had schizophrenia—or who insisted on the gag rule of silence about what was staring our family in the face every day of our lives? I thought, right then and there, that the field of mental health needed a revolution.
I still do.
That summer, Mom, Dad, and Sally flew to LA for a visit. While I toiled on campus as a research assistant on their first full day in town, they drove to Pasadena to tour Dad’s old neighborhood. Sally said that Dad was obsessed with seeing 935 North Oakland. He was still searching for clues, I surmised, something to explain his flight at age 16.
Over the weekend, Paul and his wife, Mary, hosted a family reunion. Among a crowd of cousins and other relatives I was surprised to see Marshall. At one point, looking for something to drink in the kitchen, I glanced out the window and witnessed Dad talking with Marshall in the back yard. Both of them were animated, gesturing hard, though I couldn’t make out their words. Marshall looked particularly agitated. Dad was half-smiling but appeared to be in full lecture mode, gesticulating back.
The next day Dad explained. “Marshall claimed to be Jesus,” he said. “Apparently, he has carried this delusion for some time. But I wouldn’t stand for this. As a philosopher and person of belief, I questioned his arguments. ‘Where’s your proof for this blasphemy?’ I asked him. ‘Don’t take it lightly to claim to be the Son of God!’”
A battle of the titans! Marshall’s permanent state of psychosis and Dad’s history of fluctuation between irrationality and ultra-reason provided the backdrop. I’d experienced Dad’s compassion for those with disturbed behavior, but it was clear that his tolerance did not include ultimate questions about religion and faith. His acceptance had limits.
In early September a few relatives held a Miss America party, inspired by Barbie and her partner. The TV was the centerpiece, featuring Bert Parks and all 50 contestants. With our fake crowns and ongoing satire of the ludicrous competition, we laughed so hard that tears streamed down our faces. In serious moments, Barbie talked about her imminent move to Santa Fe, where she would be able to take her photography to another level. Having already packed, she and her partner were to depart the next afternoon for a two-day drive, using separate cars to fit everything in.
Tuesday morning I got a frantic call from Bob’s widow, who was hardly able to speak. After departing, she reported, Barbie and her partner had spent the night in Phoenix. The next morning, they got up early to hit the road. But from her rear-view mirror, Barbie’s partner saw a car careen across the median and hit Barbie’s vehicle head-on—a drunk driver, killing her instantly. “She was twenty-six just like you, Steve. I can’t believe it.”
I sat in stunned silence. How was I left on this battlefield, increasingly strewn with bodies? I wasn’t sure the black cloud would lift. The only thing left was to remain duty-bound, helping those remaining.
Late in my grad school years I heard from my Uncle Harvey, the other half-brother of Dad’s, a virtuoso pianist and professor of music at Nebraska. He, his wife, and oldest son, Harvey Jr.—Chip—would be visiting Southern California soon. Roberta and I made plans to meet them for dinner.
A musical prodigy, Harvey exuded his usual nervous energy paired with gentleness. His wife, Marcy, was deeply interested in my graduate program and Roberta’s community work. Sitting on the opposite side of the table at the pizza restaurant, Chip had a faraway gaze. With his sweet, almost innocent smile, he appeared to inhabit a slightly different world. He talked about his community residence, where he’d lived after his mental hospitalizations, and his girlfriend, another ex-patient. I wondered whether it was his condition or the medications he took that gave him such an ethereal feel.
He’d been diagnosed with schizoaffective disorder—a condition that features the mood swings of bipolar disorder but also the persisting irrationality of schizophrenia between episodes. Intriguingly, the people in our family with marked schizophrenia patterns, like Marshall and Chip, came from Dad’s stepmother’s side of the family, whereas mood disorder and substance abuse problems emerged from the side of Eva, Dad’s biological mother.
It was the last time I saw Chip. He fatally shot himself a couple of years later, just past his thirtieth birthday. Once again, I felt the devastation of our family history. Numbed, I was becoming used to the pattern. How had I managed to hang on to my sanity: through my intensive work ethic and blocking off feelings? Or just the blind luck of the genetic draw? I couldn’t figure it out then. Even now, I’m still not sure.
*
At an intern
ational symposium held by the Affective Disorders Clinic during my internship year, Jamison invited Professor Mogens Schou, the Danish psychiatrist who had risked his career on rigorously testing the effects of lithium on bipolar disorder. Schou had read with intense interest Cade’s small studies from Australia—ignored or ridiculed by much of the psychiatric profession—and put them to the test.
At a small session in front of the trainees, he rolled up his sleeves to reveal his arms, grotesquely covered in purple splotches. “This psoriasis resulted from taking lithium for six months,” he told us. “I insisted that my staff and I experience the medication firsthand. Of course we would never subject any patient to a medication that we hadn’t tried ourselves.” Pointing directly at the psychiatric residents, he asked whether they would ever prescribe a medication they hadn’t first themselves taken. I hadn’t expected this level of inspiration, disclosure, and challenge.
In another talk he described his team’s clinical trials of lithium in the 1960s. Lithium is different from nearly all other psychoactive medications—number three on the periodic table, a natural element, mined from the earth. Its discovery as an agent that can dampen the risk for subsequent bipolar swings has saved countless lives from suicide. As one of the first Europeans to advocate for this medication, Schou had been ridiculed in major medical journals for promoting a pill that lacked rigorous testing. But to do so experimentally would mean that some patients would need to be randomly assigned to lithium and others to placebo.
“I was in conflict,” he told us passionately. “The extraordinary suicide risk of manic-depression was well known. I could not have lived with myself if anyone on placebo deteriorated to the point of suicidality.” The research plan he devised was ingenious. His team formed pairs of patients with bipolar disorder, matched on gender as well as severity of their episodes, with a coin toss deciding which member of the pair received lithium and which received placebo. A given pair would stay in the study only as long as needed—that is, at the first sign of worsening of either member, their trial stopped. The research team then broke the code, revealing whether the person who’d relapsed had been on the active medication or the fake pill. Crucially, they had pre-calculated precisely how many pairs would need to be in the “placebo relapse” versus “medication relapse” groups to detect a statistically meaningful benefit, so that they could test as few pairs as possible. At that point, the entire study could be stopped.
“As it was,” he concluded, “nearly every single one of the paired subjects showed relapse on placebo. We now had experimental proof.” The rest was history, as lithium quickly became the first viable preventive treatment against subsequent manias and depressions. By the early 1970s, following further trials, it was approved in the United States.
Role models like Schou gave me hope. Perhaps it was possible to be rigorous and ethical at the same time—to integrate rather than split.
Every Tuesday night, Jay and I co-led our therapy group for adults with bipolar disorder. With their lives of unbridled highs and crushing lows, the members were eager to learn and to support one another but sometimes devastated by their growing awareness. Beyond feelings of specialness, creativity, and sexual power during hypomanic periods, they now understood that they would crash and burn unless they accepted the reality of their condition. The group process supported their identification as people with a condition that mandated ongoing treatment. Why hadn’t there been anything even remotely like this, I wondered, when Dad was young?
At a late-fall meeting one of the members, Deena, in her late twenties, came in with a distracted look in her eye that grew increasingly frantic as the evening progressed. In rushed sentences, she discussed her recurring vision that she would jump from her moving car onto the freeway once the group dispersed. The next moment she was talking about the smell of her own death. Her logic was deteriorating fast.
The group members traded eye contact: Everyone realized that something was desperately wrong. When asked, Deena admitted that she hadn’t felt the need to take her meds in recent days, as the voices in her mind had told her to stop. Suddenly, without warning, she bolted from the room, sprinting through the door toward the staircase. Jay and two members quickly followed. We had to get her to the hospital before she tore off again, perhaps never to be found. I stayed with the rest of the members before disbanding early, once she’d been found in a nearby café.
Deena was in the midst of a mixed state, with a huge lack of inhibitory control and occasional olfactory hallucinations, not just hearing or seeing things that weren’t there but actually smelling imaginary aromas. She was experiencing the worst combination of the frantic energy of mania plus the self-destruction of major depression.
Jay and I slowly walked her to the hospital, one on each side, making sure that the emergency intake staff knew the story. The life-and-death nature of our work stared us in the face during each group session.
During his visit several months later, Jay and I had invited Professor Schou to one of our Tuesday evening groups. The members had read his publications; he was a hero to them. In his mid-sixties, he exuded intelligence, caring, and a deep calm. Content to be an observer for the most part, he finally relented to some closing comments.
“One day,” he said, quietly but with emphasis, “group sessions like this, rather than medication alone, will become the primary treatment for people with manic-depression. The group process will serve as a signaling system, as signs of a new episode or an escalation can be detected and tracked by one’s peers.” Medicine, he explained, might then be reinstated, or the dosage raised, in consultation with the patient’s doctor.
His candor floored me. Bipolar disorder was by that time discussed almost exclusively in genetic and biological terms, but here was the world’s expert extolling the essential nature of social interactions and social support. I reminded myself to keep an open mind and think broadly rather than narrowly.
In late January, Dad flew out from Columbus for the last part of the week-long international conference. It was a classic El Niño winter, with deluges of rain soaking the Southern California Basin. On a day of partial clearing Dad explored the beach community around my apartment in Venice, which housed many unconventional types. The roller skating craze had come and gone, and the locale had become a mix of grungy and ultra-hip. A few years before, Marshall had roamed the walkways of Venice with his flowing hair and beard, proclaiming himself as Jesus. When I’d moved out to the beach after my first year at UCLA and people learned my name, I heard gasps as they realized that Jesus of Venice Beach was my own cousin.
As the sparkling blue-gray of the Pacific yielded heavy breakers, Dad had the day to himself. During my tight schedule at the medical center I imagined him near the ocean, taking in the scene. Dodging the fitful traffic, I hurried back to the apartment in the late afternoon. He brightened as I entered, recalling how much he loved his boyhood home of Southern California.
“I walked for hours today,” he said. “The ocean was magnificent. What a scene on the boardwalk.” I replied that Venice is indeed a trip.
“I found an intriguing restaurant for lunch,” he continued. “Sitting next to me, I can tell you, were some pretty interesting characters.” My antennae were lifting.
“I could relate to them right away. Hearing their discussion at the nearby table, I knew instantly that some of them had spent time in mental hospitals.”
Intrigued, I paused, asking him how he could tell.
“Steve,” he explained, looking straight at me, “when you’ve been in mental hospitals as much as I have, you can spot the psychotics like yourself right away.”
I stared right back at him. Beyond the picture window, a flood plain filled the huge empty lot behind the apartment, half a mile from the beach. Seeking an answer, I gazed into the hardened earth, filled with pools of water. Had I heard him correctly: the psychotics like yourself?
A reply was forming in my mind. Dad, you’re attending a major confere
nce on bipolar illness and hearing talks on genes and medication advances. You’ve read the scientific reports I’ve sent you since I started grad school. Don’t you realize you’re a person with bipolar disorder—a highly genetic condition producing irrational highs and blank lows—rather than a madman, a “psychotic”?
But the words never emerged. Who was I to tell him how to think about himself? All the readings I’d sent him, all the explanations he’d heard about bipolar disorder in recent years had only scratched the surface. Nothing had put a dent in his fundamental self-image: his perception that he was one of them, not us. Brutally hospitalized at 16, he had formed an identity based on a sense of deep moral flaw. Stigma had been his constant companion.
As the sky darkened outside the realization crashed over me. Given up for dead in a mental hospital and tied to his bed as a teenager, sensing utter irrationality all around, Dad came to understand that his supposedly magnificent ideas were utter nonsense. Later hospitalizations, at Byberry and Columbus State, had further degraded him. Nothing he might learn in middle age had any chance of altering what he knew deep inside—that he was fundamentally different, insane, and not fully human.
Bitterness washed through my system. Diagnoses and treatments late in the game have no hope of altering deeply ingrained identities. We’d better listen to what the people we’re supposedly treating are telling us.
Grad school was winding down, but the real curriculum was just beginning.
11
A Deeper Layer
Increasingly aware of his slowing body and mind, Dad decided to take partial retirement at the same time I was finishing grad school. Under this plan he would teach one or at most two quarters per year, which graciously allowed the philosophy department to recruit a younger and more vibrant faculty member. Sally, Mom, and I kept a secret: I would fly in from California to surprise him at his official retirement dinner on campus.
Another Kind of Madness Page 19