In June I was at a conference in New York City, departing as soon as my talk was finished to get to Columbus. Driving me straight to the hospital, Mom and Sally told me that Dad’s mind was going pretty fast. I approached his bed to see his weakened body and drawn face. Still, he was alert. After noticing that I’d entered the room, he showed a radiant smile. “What are you doing here?” he called out as loud as he could. “I’m so delighted to see you!” I awkwardly hugged him as he lay in his bed. He seemed disbelieving of his good fortune that I had suddenly appeared.
It was soon time for another blood pressure reading. The nurse shooed all of us out for a few minutes. When we re-entered after the short delay, Dad once again showed a startle of recognition when I caught his eye. “What a surprise! It’s incredible to see you!”
He clearly had no recollection that I had been in the room ten minutes before. Every sign was ominous.
I tracked down any attending psychiatrists and neurologists I could find. Unmistakable signs of delirium, dementia, and general brain deterioration were grim reminders of his current situation. The following day Mom and I drove to several nursing homes, as the Ohio day turned from brilliant blue to milky white. He couldn’t be retained at the hospital much longer. Maybe, just maybe, if we could find a good facility, he might emerge from the current crisis and regain some of his functioning.
Back in California to conduct my summer research programs—I was running two that year—I called Mom daily, as Dad had been discharged to one of the nearby facilities we’d checked out. Two weeks later, she reported bad news. Following an infection Dad had developed a fever. The antibiotics weren’t succeeding in bringing it down. Still, I should remain put. But a few days later when she called, the gravity in her voice was unmistakable. Dad’s systems were failing. I must get back immediately.
It was too late to get East that night so I booked a flight for the following day, a Saturday. With no nonstops to Columbus I had to change planes in Denver. I phoned Sally during the layover. She was home, in between visits to the nursing facility, and told me that Dad was resting comfortably. “You’ll be able to see him tomorrow, Steve. I know it’s frustrating to wait for the second plane, but don’t worry.”
On the startlingly warm night of July 22, I finally arrived at 10:30 after an additional two time zones of delay. Thinking I’d grab a cab home, I was surprised to see Mom and Sally near the baggage claim area, straining their necks to find me. But their faces told the story.
“Daddy died an hour and a half ago,” Sally said. “I was back at the facility sitting with him. Mom had gone home to take a shower. As I was holding his hand I felt his breaths getting shorter and shorter. A few minutes later he took his last one.”
Mom looked exhausted, feeling guilty that she’d left for a break but realizing the inevitability of what had transpired. We drove straight to the nursing home over the back roads of Columbus. Through the open window I viewed the brick factory buildings, now closed up forever, amid cricket chirps and light traffic.
Ahead of Mom and Sally, I rushed to his room down the linoleum corridors of the care facility. Feeling unreal, I opened the door and approached Dad’s bed. I gazed at his rigid body and peaceful face. He was diminished, literally ravaged over the past several years. Still, his hair, nearly jet black until he was 70, was even now only half gray five years later.
Couldn’t we talk just one more time?
The next day was a blur. At the funeral home to plan the burial and memorial, I looked again at Dad’s body in the open casket as the loneliness hit me like a tidal wave. At the cemetery a morning later, the day was already sultry by 10:00, sweat dripping down the temples of everyone assembled—the small group of family and colleagues sitting under the trees. Numbly, I watched the casket mechanically lowered into the earth.
I flew back West for my programs but returned the following weekend for the service of memory at the church where Dad had sung in the choir for so many years. Hundreds were present: friends, university colleagues, family. It opened with a tender oboe solo and chamber music from a small group of Columbus Symphony players. The choir sang before Randall spoke warmly of his younger brother, recalling childhood memories, graduate school at Princeton, and continued contact at recent family reunions. Too emotional to sing at the service, Paul spoke about the warm caretaking he received as a boy from his older half-brother as well as the sports they played together.
Then it was my turn. Looking out from the pulpit, with Mom and Sally directly below, I began by describing Dad’s life—his early years, the loss of his mother when he was three, the family’s move to Pasadena, his academic successes, his flight to save the world from Fascism, his hospitalizations, and his love of OSU. I recounted the two stories of the number 100: my kindergarten question about the populations of Russia and China and my fourth-grade sleeplessness and despair, solved by Dad’s telling me I’d live to be 100 years of age via the miracles of modern medicine. I spoke of his lifelong probing of the underpinnings of the indescribable mysteries of everyday existence. I told the assembled group that despite his misdiagnosed mental illness, he was a warm and caring father.
Finally, I said that even though Dad had become essentially a spirit in his final years, his spirit was still alive in me. I repeated a short quotation from Bertrand Russell, which Dad had placed at the end of his own self-description for Who’s Who. Nearly eighty years of age when he wrote it, Russell was describing love and compassion:
If you feel this, you have a motive for existence, a guide in action, a reason for courage, and an imperative necessity for intellectual honesty.
Throughout, I felt the familiar mixture of emotions: sadness over the unrealized potential of Dad’s life, anger over the ignorance of the mental health profession, and gratitude over having been his son.
On my way to the airport the following morning, I asked Mom to detour to the cemetery. We got out and walked to the gravesite, where Dad’s name and dates had been freshly chiseled in the headstone.
In loving memory, Virgil G. Hinshaw, Jr., 1919–1995
An hour later I hugged Mom at the airport, walked onto the plane, and flew back to complete the summer programs for a hundred-plus kids who needed help, in the hope that our findings might reveal the underlying nature of their mental-health-related conditions. Dad’s words a quarter century before—and throughout the intervening years—had opened the doors and provided the spark.
14
The Rest of My Life
Every few weeks I visit my cousin Marshall at his apartment in downtown Berkeley. It’s more of a cell than an apartment, about 8 by 10 feet, the walls stained a permanent yellow-black from nicotine. A twin mattress covered with age-old sheets on a metal frame, a tiny refrigerator, an antique television, a newer computer monitor that only sometimes transmits images, and a single chair comprise the room’s only furnishings. The window is permanently closed, leaving the air inside the room so hazy with cigarette smoke that it’s hard to make him out, much less breathe. The communal bathroom lies a few yards down the perennially empty hall.
He resides within a single-resident-occupancy building, two blocks from the Berkeley campus. Instead of an institution, where he would have undoubtedly spent the rest of his life had he been born half a century earlier, the residence is a warren of isolated rooms. Except for the gregarious and warm apartment manager Cathy, who sometimes returns on weekends to share home-cooked food with the residents, and a few fellow souls who know Marshall, it’s as forlorn a place as I’ve ever been.
Now in his mid-sixties, Marshall has four teeth left. His shoulder-length gray hair and his scraggly beard are seldom washed. Just as when I talked with him four decades ago during my grad school days, his initial, enthusiastic words yield to raspy-voiced diatribes that become impossible to follow, especially above the din of the high-volume television. When I told him not long ago that I was heading to Chicago for a conference, he told me that I would be traveling to Chicago, Mississippi,
not Chicago, Illinois, before launching into a spinning discourse on hidden geographic passageways. A planned visit to our house for an outdoor meal becomes, in his mind, a trip through a time portal to a different dimension. His internal systems of logic are inscrutable yet repeatedly honed.
For 48 consecutive years, Marshall has dealt with schizophrenia, which in his case is an unrelenting pattern of visions and voices, reasoning only he can follow, and an otherworldly style of interacting with the social world. Only a minority of individuals with schizophrenia show the utterly chronic pattern that he displays. If he were placed in an MRI scanner, the images would certainly reveal massive spaces where brain tissue is supposed to be. The newer-generation antipsychotic medications he takes help a bit: When he stays on them, his lucid periods of speech last a bit longer and I can feel his presence more acutely.
All those years ago when I was in school, I had three contrast points with Dad in the attempt to understand severe mental illness: Marshall; my other cousin Chip, whose schizoaffective illness led him to take his life not long after turning 30; and my high school and college teammate and friend Ron, whose unrelenting psychosis precipitated his disappearance from Harvard and the rest of the known world. Yet today, when I bring the groceries Marshall likes—fresh milk, white bread, ballpark franks, peanut butter and jelly, processed meats, sliced cheese, and as much instant coffee as I can carry—he grins from ear to ear. He pumps my hand, gives me a hug, and remembers to escort me through the hallways as I depart. As he says, it’s the host’s duty to do so. Each time, I’m floored by his overwhelming wish for contact.
Which should we choose: the overcrowded state institutions of the past, with their dehumanization and potential for abuse? Or the isolated rooms of a transient hotel, where people like Marshall sit all day—or, in his case, walk a mile down to the public mental health clinic twice a week to receive medications and a few dollars from disability payments? Should our choice be then, with the snake pits that took so long to dismantle? Or now, the threadbare, desolate rooms where isolation is the chief presence? Marshall is so bereft of human contact as to break the coldest of hearts. Anyone who contends that progress in the community “treatment” of serious mental disorder is enlightened must not have seen what I’ve seen.
My family legacy of mental illness accompanies me everywhere I go. My constant companion, it reminds me of what I escaped and what I still face.
*
Following Dad’s death in 1995, Roberta and I devolved toward a permanent split. What held me back was the fear that I might not be with Jeffrey each day. After all, Dad had stayed with us and supported me when I was young except for those times he’d been placed in a mental hospital. What was my excuse? That my marital relationship wasn’t what it had been? I found a new house three quarters of a mile away and the divorce was finalized by the end of the decade. I continued to see Jeff daily.
Now an adult, he is thriving, negating the concerns gripping me during my twenties—that having children would only perpetuate the dark side of the family history. It’s essential to remember that, despite the high genetic liability of bipolar disorder and other forms of serious mental illness, the vast majority of offspring do not go on to develop the same conditions. Amid all the work involved, parenting is an act of faith.
During the 1990s, I continued conducting summer research programs for kids in trouble, particularly a series of camps for girls with significant problems with attention and impulse control. For one of these we hired an art teacher from San Francisco, Kelly Campbell. Her vibrancy, depth, and devotion to kids were evident from the start. Half a year later, she contacted me regarding a new job of hers, needing a referral for a student, and we began conversing. From our earliest moments, we were honest and open, supplementing the spark we both felt. We were married at Berkeley’s Faculty Club in 2001, six years to the day after Dad’s death. Two years later, Evan Robert Hinshaw emerged into the world.
We’re different in temperament: Kelly is artistic, vibrant, even-keeled, and meditative, whereas I’m analytic, competitive, sometimes irascible, and incredibly goal-directed. Still, our connection has only deepened over the years. Early on, she helped me through a crisis I thought I’d never resolve. I’d begun drafting descriptions of Dad’s life, but Mom was clear that going public would be the ultimate in shame for her. Yet how could I claim to be changing the climate around stigma if I kept our family’s core messages buried? Listening impartially, Kelly stated that of course Mom was ashamed of the past but insisted that if Alene came to understand what the project meant to me, she’d eventually come around.
To my surprise, over the next years, as I began to give talks about our family and drafted the monograph on bipolar disorder using Dad’s life as an example, several of Mom’s oldest friends—all the way back from grade school in Bexley—read what I’d written. The secret was now out in the open, and they praised her for the courage she’d displayed throughout her married life. In the end, Mom fundamentally changed her attitude, asking for extra copies of the monograph and wondering why it hadn’t been reviewed more widely. She was actually pushing for the family story to be widely heard.
For decades, I’d been reluctant to reveal our family’s past, and my own. Yet by doing so, I not only freed myself but, against my initial judgment, propelled Mom to find a more open existence in her final phase of life. No one had ever bothered to listen to her years before: The medical profession had shut her out, and social mores kept our family’s struggles enshrouded in silence. At long last, she had a voice. When shame and stigma are shed, hope can truly emerge.
A year after Evan’s birth I flew to Las Vegas to give an all-day workshop on childhood behavior disorders. Sickened by the opulence of the suite in which I’d been put up, as well as the 100-degree heat held off by the overly chilled air conditioning high above the desert floor, I felt miserable. With travel I often feel unmoored, lacking the tether that keeps me bound to familiar routines. I also felt that I hadn’t disclosed enough in my monograph, failing to tell what it was really like to grow up in our silent home.
After the workshop, which I somehow delivered on autopilot, my cousin Jim came to the hotel for a drink. He was the oldest son of Uncle Harold, Dad’s oldest brother—the one with lifelong alcoholism. Jim lived outside of Vegas and was a fascinating guy, having provided the initial engineering for the glittering lights that made modern-day Vegas look as it does at night.
“I read what you wrote, Steve,” he said as we downed an initial Sidecar. “I imagine that you’ve been getting some flak.” Not quite sure what he was getting at, I listened hard. “Don’t let anyone ever tell you that you were too harsh about my dad’s and your dad’s stepmother. I believe every word about what she did to your dad.” He went on to state that his father’s drinking problems led to a life that had been far different from the academic careers of the other original brothers, Randall, Bob, and Virgil Jr. In fact, Nettella was outraged with how Harold had turned out. She shunned him and, later, his wife and kids.
“She wouldn’t even let my mom bring us to the house on North Oakland Avenue. We weren’t good enough; our family was immoral.” He knew, he told me, what it was like to be an outcast. “Keep telling the truth,” he concluded. “People should know what really happened.” His words pumped my motivation to keep pursuing the family narrative.
Clearly, scientists must be dispassionate and objective when testing hypotheses and theories, so their expectations and bias don’t taint any gain in knowledge. Yet in the discovery phase of the scientific enterprise—before all the hypothesis testing and statistical analyses take place—inspiration, insight, and passion can guide where the research should head, and indeed, inform the right questions to ask. Particularly in medicine and mental health, narrative accounts can make a real difference.
At the same time, such narratives must be both real and accurate. Anyone can create a tale with a beginning, middle, and end, but is it reflective of the underlying truth? Cr
ucially, I’d learned that Dad’s experiences at Norwalk, Byberry, and Columbus State were not simply figments of his overworked imagination. His hospitalizations were as brutal as he’d depicted. Taking the battle to the next level will require legitimate stories and the best of the scientific method.
*
In 2004 I was asked by our dean to take on the role of department chair, becoming the first member of the clinical area of psychology to hold this title since psychology had split off from philosophy in the early 1920s. My main goal was to cross the major divide in the field: the biological, neuroscience, and cognitive areas of psychology versus the developmental, social, cultural, and clinical wings, bridging the fissures that had plagued not just our department but much of psychology half a century earlier. Through my understanding of Dad’s early experiences, along with the primitive treatments he’d encountered, I’d learned the hard way what happens when fragmentation rather than integration carries the day.
I spent any spare hours working to understand stigma. To deepen my knowledge of what it really entails I began probing evolutionary perspectives. The underlying premise here is that natural selection has favored high levels of social contact in humans, as cooperation is essential for the survival of our physically unimposing species. On the other hand, complete trust in others might be disastrous, allowing opportunities for disease, exploitation, and subjugation. In other words, humans must traverse a narrow path between social contacts and caution regarding interactions. As a result, signals of social threat have become hard-wired into our minds and brains through natural selection, in the form of specific exclusionary “modules” or programs that place brakes on our interpersonal lives.
Another Kind of Madness Page 24