Another Kind of Madness Page 18

  Roberta and I had to figure out whether our relationship would continue. We were getting more serious. “I don’t know about Southern California,” she hesitated. “Not exactly a feminist haven.” I countered that maybe she could move out the following spring, once her job was done and I’d settled in to my first year there. Her compassion had given me strength and girded me through my worst crisis. I looked forward to a future together.

  The last summer of Camp Freedom was loaded with the usual daily triumphs and tragedies, but a new life awaited me on the far edge of the continent. My cast came off at the end of the summer and I started some rehab to strengthen my withered leg. On my way to LA, I stayed over in Columbus for a couple of days.

  “How are you feeling about moving to Los Angeles?” Dad asked from behind the wooden desk of his home study. He was animated but fully in control. “I have colleagues in philosophy at UCLA.”

  “Well, New England was pretty great, but this should be a real challenge. And I’ll be near where you grew up. Maybe you could visit?” Dad assented eagerly, noting that he always relished the chance to return to Pasadena.

  The year before, Uncle Harold—Dad’s oldest brother—had died from alcohol poisoning. Bob’s status was tenuous as his dialysis continued. How exactly had I escaped all this?

  I had, right?

  I finally got to my most important question, about the lithium. Dad’s new diagnosis and treatment had been in place for over a year. He replied that he had received frequent blood draws at the onset of treatment and that he was distressed by the fine-motor tremor he had developed, altering his elegant handwriting. Yet he summed up that he hadn’t had this kind of assurance—of being protected from another episode—for as long as he could remember. His awkward hug removed several tons of weight from my body.

  Half a week later I grabbed two huge suitcases from the luggage carousel at LAX. On the freeway to Westwood, the post-midnight sky was a strange orange-black, with millions of city lights off to the sides. I entered my small studio apartment two blocks from the UCLA campus, with flowering vines right outside the door, and fell asleep in a heap.

  In that land of smudged skies, aromatic flowers, and searing sunlight intermixed with occasional winter storms, I was on the verge of discovery. I wondered where the current might land me.

  10

  The Thought Experiment

  “We’ll lead off today’s seminar with a question,” stated Kay Redfield Jamison from the head of the huge oval table. “It’s a thought experiment.” Forthright, supportive, authoritative, and energetic, Jamison was a dream mentor and supervisor during my year-long internship following four years of grad school. Such internships provide the capstone experience for clinical psychologists in training. There was no mistaking the quality of her mind, which permeated each pronouncement.

  All 20 psychology interns and psychiatry residents stopped their conversations. During our intensive rotations through the Affective Disorders Clinic at the UCLA Medical Center, we performed intake assessments, conducted therapy sessions, and in some cases led groups. The clinic had become a top venue on the West Coast for patients with serious depression or difficult-to-treat forms of bipolar disorder. The weekly seminar provided the glue and theoretical background for its activities. As the clinic’s director and seminar leader, Jamison usually began by discussing a provocative new finding or sharing a clinical case. Why had she switched things up today?

  It would be another 15 years before she emerged with the disclosure of her lifelong bipolar disorder, through the publication of An Unquiet Mind. Even back in 1981, however, she was clearly attuned to the undercurrents of the field’s increasing knowledge of genetics.

  “Project yourselves into the future,” Jamison went on. “Suppose you or your partner become pregnant—and there’s a new screening test that can accurately detect the risk that the fetus will develop bipolar disorder.” If Jamison didn’t have my attention before, she did now. Even though the risk for manic-depression, she continued, would emanate not from a single gene but from several in combination, the science might one day develop to be able to detect risk with real precision.

  “Assume that the screening test comes up positive. In other words, it’s virtually certain that your child will develop manic-depression.” She noted that if current screening tests were positive for Down syndrome or other forms of mental retardation, the family nearly always decided on an abortion.

  Thoughts of Mom’s sister flooded my mind. Although Ginny Ann hadn’t been born with the chromosomal irregularity of Down syndrome or the profound intellectual disability she’d developed after her catastrophic fall down the basement steps, she’d emerged into life with some kind of developmental disorder. With prenatal detection, would she have ever been born?

  Jamison had reached her conclusion. “Here’s the question. Under this scenario, how many of you would elect to have an abortion for yourself or your partner? We’ll take a vote. Raise your hand if you select the abortion, given such a test result.”

  For a second, the room went silent. A few trainees looked around sheepishly while others glanced down. Jamison repeated her query, calling again for the straw poll.

  One thing was sure: My hand would remain glued to the table. My arm, in fact, began to ache from pressing down so hard on the wood surface. But as I looked up every hand in the room was held straight up, every hand except for mine and that of my best friend, Jay Wagener, a fellow intern and fellow Midwestern survivor of a gifted yet troubled family. Jay and I had connected early in the internship year, through co-leading a group for people with bipolar disorder in the Affective Disorders Clinic and, even more, through talking about the streaks of mania, substance use, and disruption in both our families. Friday-evening, post-internship-week treks to dive bars throughout West Los Angeles solidified our bond.

  Incredulous, I wondered whether someone had sucked the air from the seminar room. But there was no doubting the consensus from the staff and trainees of a preeminent clinic for serious mood disorders. I quickly traveled back in time. If this kind of test had been available 60 years before, Dad would never have come into the world. Our family, lost in the ether.

  And what about any kids of my own? For the past decade, ever since Dad’s first disclosure, the idea had been too frightening. I was now starting to reconsider, but if such a test existed, how could any child of mine enter the world? The seminar readings were absolutely clear that the heritability of bipolar disorder is huge, even higher than the genetic vulnerability for schizophrenia, with the risk transmitted almost entirely through genes passed from parent to child.

  From a distance I heard Jamison comment on the vote, yet I hardly followed the thread. As the hour concluded Jay and I stole a glance at each other across the table before heading our separate ways to packed schedules, our eyes wide and eyebrows raised. Did that just happen?

  Over the next days I tried to salvage a moral to the story. All the seminar participants had been learning about the devastation often associated with serious mood disorders through some of the most difficult patients on the West Coast. The Affective Disorders Clinic was a magnet for crisis cases, people whose manias had led to involuntary hospitalization or whose depressions were resistant to traditional treatments. No wonder everyone had been so freaked out. But all the rationalization in the world couldn’t remove the reality: The future leaders of the mental health field had just voted to eliminate my family members from existence.

  I mentally reconvened the seminar and made a speech. Don’t you know my dad? The one who understood me when I’d given up hope, who persevered despite all odds? Finally diagnosed properly, he has embraced his new treatment. Yet you’d have prevented him from joining our planet—and remove our family’s chromosomes from the gene pool?

  I’d been open with a few more people about my family, but in the aftermath of the thought experiment I said nothing to the seminar participants about the topic. Wouldn’t I be known as a flawed member of a
flawed family, unqualified or even ineligible to become a professional psychologist or scientist? Someday, I secretly pledged, I’d fill in the profession about Dad’s life and our family’s plight. But how would I ever get to that point?

  *

  The previous four years in grad school had been nonstop: Courses with huge reading lists, placements with clientele ranging from couples experiencing marital problems to teenage gang members, and case conferences that bordered on the interminable. But I didn’t complain. The knowledge was red meat for my hunger to learn about brain science, personality theory, child development, community models, assessment and diagnosis, and blends of medication with psychological treatments for serious mental illness. After my three years as a school coordinator and camp director following college—with the lives of the kids on the line every day—my stint as a Ph.D. student actually seemed pretty luxurious.

  My initial goal for grad school was to be able to continue to run schools and camps, but now armed with a doctorate. Yet when scheduled to present at a case conference or give a guest lecture, I was able to articulate complicated concepts; the words seemed to emerge from my mind unbidden. It dawned on me that I might know more than some of my professors about psychopathology. Over time, I developed the objective of integrating the biological side of the equation—genes, brain function, early risk—with the contextual side, including families, peer groups, and schools. A professorship might be just the ticket to create and spread knowledge.

  All the while, small bursts of energy aided my efforts. I never reached irrationality, and my controlled existence stopped me from pulling any all-nighters. Still, my appetite for big projects, large ideas, and stitching together all sides of an issue just had to be fueled—and still is—by the DNA inside my cells producing surges of sub-manic intensity. When the bottom periodically drops out, especially if I sense I haven’t lived up to my ultra-high expectations, my world suddenly turns pitch-dark. Inconsolable, I despair that all my efforts have been for naught. My mini-swings are a pale echo of Dad’s mega-episodes.

  The late 1970s and early 1980s were a mind-bending time to be working toward a doctorate in clinical psychology. Genetic models had risen to prominence. The year before my internship, the third edition of the psychiatric bible known as the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) was published. Greatly expanding on earlier editions, its goal was to make diagnoses precise, with clear symptom lists embedded in a web-like hierarchical organization. In short, it was a master scheme.

  As a boy I loved maps, those two-dimensional guides to the world. During my high school football days the playbook I finally received was a revelation, as I devoured the intricate systems of plays, based on core formations and blocking schemes. As Camp Freedom’s program director I created the maze-like organizing grid of our daily schedule, with the goal of promoting each child’s targets for learning and behavior. Each time it was the grand plan—the 30,000-foot view—that drew me in.

  But with maps there’s only the bird’s-eye view; no sight of the actual terrain. Playbooks don’t capture the smack of helmet on helmet or the lung-burning panic of beginning the fourth quarter of a tough game. Master schedules can’t convey the frustration of children who have trouble learning—or their families, desperately seeking any sign of progress.

  Indeed, some of my most important learning during grad school took place on the ground. During my initial year at UCLA I’d started to work with kids who showed serious problems with impulse control. For a pilot test of self-management interventions at a local school, I worked with a group that included an extremely bright 12-year-old who’d been branded by his teachers and family as extremely impulsive, constantly acting without considering the consequences. Within the group he became involved in the exercises and role-plays, appearing to make real gains.

  A few months following the group, I ran into him and his parents by chance on an LA street. His right hand was heavily bandaged. I subsequently learned that he had kept playing out in the garage with the pneumatic pump for the family’s camper, despite clear knowledge he shouldn’t take such a risk. He was so tempted by exploring and tinkering that he triggered an explosion of the compressed air, which blasted three fingers permanently from his dominant hand. Sobered, I understood that a scientific and clinical concept like impulsivity had grave clinical consequences.

  I learned more in unexpected venues. One day I walked a couple of blocks to a travel agency in Westwood, not far from the UCLA campus, to book a holiday flight to Columbus. I was beginning to register that in Southern California, 75-degree temperatures in November were the norm. “OK,” the guy behind the desk said, not a whole lot older than I. “Let’s pull up your reservation. Last name?”

  “Hinshaw,” I replied, “with an ‘i,’ not an ‘e.’ And Stephen, with a ‘ph,’ not a ‘v.’”

  He paused. “Wait a minute,” he said, looking me up and down. “Hinshaw? I knew a Hinshaw a few years back, east of LA, out toward the desert.” Lost in memory, he gave a first name that didn’t ring a bell. Because there aren’t too many Hinshaws in the world, whoever he was discussing must have been a distant cousin.

  “That dude was way out there,” the travel agent continued, now getting worked up, his hands going in big arcs. “Man, talk about crazy. He was far gone, way out of touch. He heard and saw things that weren’t there, strange ideas all the time. What a dude.” Listening in silence, I had nothing to add.

  “Wow,” he concluded, shaking his head, “was he ever out there. What a wildcat! Anyway, let’s get that ticket of yours going.”

  Feeling as though my family had been placed under a microscope, I collected the itinerary and envelope, wondering just how many insane Hinshaws there might be in the world. At least I’d escaped such a fate. Right?

  *

  I had actually introduced myself to Kay Redfield Jamison during my initial year in grad school. She’d made a presentation on mood disorders at a case conference I’d attended. My self-taught interest in bipolar disorder, paired with her brilliant talk, had me enthralled.

  Not long after, I received an urgent call from Dad. He’d been in discussions with Bob, whose kidneys were further deteriorating. Bob’s specialist had put out a call for any relatives who might serve as a donor match for a transplant. Dad wanted to help but was unclear whether the lithium he was taking—with its potential side effects on renal functioning—would make it too risky for Bob or himself.

  Thinking fast, I cold-called Jamison, clearly a world expert on the entire topic. Certain that a secretary would screen incoming calls, I was shocked when she answered after two rings. I introduced myself, praying that I didn’t sound too much like a lowly first-year grad student, and summarized the situation. She told me to come by the following week.

  Through the warren of medical-center corridors, I managed to find her office. With rapt attention and incisive commentary, she provided the kind of authoritative feedback I’d been longing for. In the end, Dad and his doctor opted out of having Dad donate; the risk might be too high. No other matches could be found. Bob’s fate seemed sealed.

  The fall of my second year was eerily like my sophomore year at Harvard, as I was overwhelmed with coursework and clinical cases, with far too much to do in too little time. I worked frantically but my spirits ebbed. Roberta had moved to Southern California the previous spring, and we were working out how our relationship would continue. Most mornings I felt a gray cloud encircling my head and wondered whether I could muster the energy to make everything happen.

  As October waned, evenings came on early, a cool haze emerging from the Pacific and lingering through the night. Unexpectedly, Bob’s wife called to say that he was at Cedars-Sinai Hospital. After all the waiting, a donor match had suddenly materialized. It was now or never: He’d been rushed to the hospital for transplant surgery. Would it take?

  On a misty evening a few days later, I drove into the unfamiliar turf of Beverly Hills and West Hollywood. Emergin
g from the huge hospital parking lot I found the elevator to Bob’s floor. To my amazement he lay resplendent in his bed, smiling, jovial, thrilled to finally have a new lease on life. In the corridor his middle daughter Barbie—in between Sally and me in age and almost my twin in temperament—explained that this was the father she hadn’t seen in years, laughing and full of energy. Sure, maybe he was jacked up on the high-dose steroids he’d been prescribed to fight rejection of the new kidney, but some of the joy was real. Uplifted, I experienced emotions I hadn’t felt in months.

  Two days later Dad called early in the morning, before my classes—a rarity. Instantly on alert, I expected bad news. “Son, it’s a terrible tragedy,” he said, his voice somber. “My brother Bob died in the hospital last night. The medications to fight the rejection took his life.” He repeated the grim joke about saving the kidney but losing the patient.

  Adding to the sense of unreality, the weather turned, as Santa Ana winds scorched the LA Basin. Howling gusts pierced the air, blowing the smog toward the beach. Temperatures soared, nearing 100. Any spark in the brush of the foothills ignited huge fires, smoke filling the air. When Dad arrived at LAX for the funeral a week later, hot ashes were dropping from the sky over the western portions of Los Angeles, imprinting small burn marks on cars and roofs.

  His closest brother was suddenly gone at age 60. I kept thinking how far you could fall in our family. The pit was so deep that I couldn’t begin to see the bottom of the void.

  *

  By the following spring my life began to feel brighter. I decided it was time to get to know Dad’s family better. I spent time with Barbie, who’d become a photographer, a daring individual with an impish grin, newly emerging as a lesbian. After a talk with Dad’s youngest brother Paul, now a soloist with the LA Master Chorale, I drove to Long Beach on a warm afternoon to visit his son Marshall.