Another Kind of Madness

by Stephen Hinshaw

  Shouldn’t it be the same for people’s impairing problems of behavior and emotion, which are now termed mental disorders? If only we could organize and classify this huge array of distress, we might leave the Dark Ages of uncertainty, mystery, and fear. No more guesswork; no more stigma. Used throughout much of the world, the International Classification of Diseases includes a section on mental disorders. In the United States, the DSM is the psychiatric bible. Its third edition dominated my learning during my internship.

  Emerging into the world of scientific psychology, I was convinced that answers were close at hand. Mental illness should be part of a rational science. Through the placement of a person’s unusual and troubling symptoms into a psychiatric classification scheme, progress should mount. The task would not be simple, of course, given the myriad ways in which humans interact with the world, the vast complexity of the brain, and the troubling lack of any “neural signature” for specific conditions. Still, diagnosis could remove personal and family blame by locating the problem in an ordered system. Treatment strategies would follow suit, each linked to a diagnosis within the classification. Mental illness might finally be solved!

  But like many others in the field, I was slowly coming to a different realization. Such an architectural guide glosses over the realities of people’s emotions, conflicts, coping strategies, and lives. Even more, different people with the identical diagnosis, like serious depression or bipolar disorder, may actually be quite different: Their similar symptoms can betray different vulnerabilities, risks, and developmental pathways. Multiple roads may lead to Rome, but these disparate patterns are masked by traditional diagnosis.

  Even more, environments shape behavior at the same time that individuals select and interpret their particular contexts, meaning that reciprocal processes are frequently at work. Over time, repeated reciprocal patterns yield transactions, when reciprocal patterns spiral and consolidate. Finally, transformations emerge when even a small change in transactions brings forth a new configuration—as when a difficult life event pushes a vulnerable individual into serious dysfunction. Putting a diagnostic box around such complicated processes can obscure the living, breathing person in question.

  Unlike inanimate objects, people respond to the ways they’re classified. Receiving a diagnosis of mental disorder might lead to liberation, relief from shame and doubt, and the motivation to seek treatment, but it might also promote demoralization and dehumanization if the person’s essence is lost—and if mental illness continues to be viewed as shameful. Coming to this understanding shattered my certainties. To make sense of it all, I knew that I’d have to grasp the complexity of transaction and to comprehend people’s experiences, behind the diagnoses per se. To comprehend transformations, I needed to transform.

  *

  Dad was graduate secretary for Princeton’s class of 1945, the year he completed his dissertation. On visits home I would see him dutifully typing up the remembrances classmates had sent him for the alumni newsletter. Every June, he traveled to Princeton for the graduation ceremony. Sometimes Mom accompanied him so they could make a weekend of it.

  On one trip during the late 1980s they spent the night in Philadelphia before their return to Columbus. The next morning, Dad told me in his study a few months later, he became obsessed with finding Philadelphia State Hospital—Byberry—where he’d spent five long months in the spring and summer of 1945. Dad said that he’d searched maps and finally figured out how to get there, even though suburbanization had rendered the surrounding environs nearly unrecognizable. When they finally reached the site, Dad scratched his head: The only buildings around were abandoned ruins, with apartments, office structures, and malls nearby. It dawned on him that the monolithic structure was in the process of being razed.

  Had the events there really happened? Were his recollections of the terror, beatings, and insulin coma treatments real? Or had he imagined the whole thing? He needed proof, but the proof was vanishing before his eyes.

  *

  With the raw material of Dad’s writings now available to me, I felt like an astronomer with a more powerful telescope. One afternoon I scrutinized an undated yellow legal pad from his mass of files. The frenetic writing was a jarring shift from his usually elegant strokes. He described those months at Norwalk County Hospital when he was turning 17, following his abortive attempt at flight to save the world from Fascism.

  • At one with the world—‘in, but not of, this world’

  • Celestial music of the spheres, all night long, since I slept so little

  • In the Hallway of Hell, with micro-and macrocephalics …

  • Tried to relive my own infancy and childhood, or the infancy of Vergil, the Roman Poet, especially as to the learning of language. Likewise, to probe the origin of all language, from the baby Vergil’s/Virgil’s first words. Are many of the Latin words echoic in origin, and related to the breathing patterns of a baby? Was I, in some respects, the Vergil of the Aeneid? Is there metempsychosis? Reincarnation?

  No mention of refusing to eat the food—which he’d imagined to be poisoned—at the facility, leaving him at a skeletal weight and near death, yet plenty of evidence as to his grandiose thoughts.

  Other pads revealed crowded passages, where his notes in the margins were dizzyingly connected by a series of wild arrows in some sort of jumbled code. Although recalling earlier times of mind expansion, he must have been plenty elevated at the time he wrote these lines, as well:

  In madness and high enthusiasm, bizarre behavior is explained by the presence in the world of a mysterious power, which may enter the person and make him/her its instrument. In the Old Testament, power called ruah or breath. Thus Sampson’s strength, the insanity of Saul … An age was anticipated when God would “pour out his spirit on all flesh” … Cf. applications to feels, grimaces, gestures, etc., that “recall,” however subtly, some previous gesture in a similar situation: A hand to wipe away a tear now when there is no tear … an apparently warm buttocks when now thinking of or contemplating doing something for which such an act, when done as a youth or child, was thoroughly punished.

  Why had it taken me so long? Dad completely anticipated his hospitalizations, which were as inevitable to him as the strappings his stepmother had meted out decades before. Mental illness and hospitalization were a deserved series of tortures, punishments he’d brought on through his lack of faith and his failings of character.

  In one essay Dad referred to Goffman. For some of the sociologist’s key books—like Stigma and Asylums—he had spent months living in a mental hospital in order to understand the experience. He coined the term “total institution” to describe the dehumanization inherent in giving over one’s complete identity to a prison, hospital, or death camp. In his typewritten journal, Dad likened the act of forgoing his own clothes and anticipating judgment at Norwalk, Byberry, or Columbus State to awaiting, with his pants down, his early punishments, when he had to choose their mode, timing, and severity. In Dad’s mind, the processes were one and the same.

  *

  When Jeffrey and I were back in Columbus over a holiday in the early nineties, Mom took us to the community residential facility where her older sister, Virginia—Aunt Ginny Ann—was housed. The rooms were beautiful and light, the antithesis of a traditional state institution. Now in her seventies, Ginny Ann had bobbed white hair. We noticed the staff’s devotion to her, even though she hadn’t walked or talked since she was a girl and even though it was clear from her vacant expression that she never would again. Still, her behavioral goals for independent functioning were posted each week for all staff to see. Years later, Jeffrey told me how frightened he was of the facility, with the wheelchairs and grunts and vague smells of antiseptic from the bathrooms. Silent tragedy had become the legacy of not only Dad’s side of the family but Mom’s. Still, the setting gave me renewed hope that the movement toward humanization might continue.

  With their love of the desert, Mom and Dad de
cided to purchase a town house in Palm Springs, a few blocks from the apartment they’d rented each winter. The pool, framed by flowering trees and palms, provided an oasis, with Mt. San Jacinto straight behind, towering over 10,000 feet straight up from the sea-level desert. During my visits Dad and I found time to talk whenever we could. As always, the conversations revealed an alternate reality, more vibrant than most any other I’d experienced.

  As he sat by the pool one morning before anyone else had ventured outside, I saw his poignant expression. His eyes tilted upward, a sign that he was seeking some kind of higher meaning. “Throughout my life I’ve longed for some way of understanding my difficult experiences,” he said. “I’ve sought explanation for what was happening to me.”

  He took a breath. “There are times that I’d wished I had cancer.”

  Temporarily stunned, I listened in silence. “Cancer?” I finally repeated. Was Dad losing his rationality before my eyes?

  “Cancer is a real illness,” he calmly proceeded. “But each of my experiences was related to a mental illness. Think of the very term: an illness of the mind.” He noted what it meant to a philosopher to have such a disease: Perhaps everything he’d experienced was fabricated, just a figment of his imagination.

  “How I’ve longed to have a real illness,” he summed up.

  I knew better than to protest by proclaiming the reality of mental illness or reminding him of the current science regarding the role of genes in relation to bipolar disorder. The implication was clear. If people with mental disorders are convinced that the core problem lies in their own flawed character—and that their symptoms are somehow imagined—little wonder that engagement in treatment is low and self-stigma high. When brutal “care” occurs during one’s formative years, as it had for Dad at Norwalk, any later book learning won’t stand a chance of erasing one’s core identity.

  Dad had smoked since he was a teen, having started in earnest during his first episode of manic grandiosity on the streets of Pasadena. As befitting a philosopher, he gravitated toward pipes but still kept up with cigarettes. At the end of the 1980s, a few months before his seventieth birthday, he went cold turkey, in full knowledge of the health risks he’d been incurring. There was little fanfare but he was proud nonetheless. Yet within several months he began to experience problems with his voice. He couldn’t maintain its volume; his words sounded raspy. When we spoke on the phone, I kept asking him to speak up. His doctor thought initially that he had a throat infection but medicines did no good. It was the first sign. Indeed, it’s now understood that the nicotine in cigarette smoke may mask the onset of movement disorders like Parkinson’s.

  When he and Mom flew out to Northern California for our first Thanksgiving back in Berkeley in the fall of 1990, I watched him attempt to stand up or change direction. He would suddenly freeze, temporarily immobile. Although deeply proud that I was at Berkeley, he looked frail, having shed many pounds despite no change in diet.

  The next spring he received an invitation to speak at the prestigious Gordon Research Conferences, which take place each year in New England. He prepared a paper entitled “The Dialectics of Control,” expansively blending Aristotle, Plato, Hume, Marx and Engels, and R. D. Laing. Mom traveled with him and attended his session. She told me afterward that when he tried to deliver his paper, he couldn’t quite turn the pages of his notes, losing his sequence. Sadly, she noted the vast difference from his captivating lectures so many years before when his career was launching.

  Nowadays when we greeted each other, Dad gave me a stiff hug, far different from his lifelong handshake. He traveled to the Bay Area that fall for his fiftieth class reunion at Stanford, for the Class of ’41, but his facial muscles seemed encased in plaster. Classmates and friends commented on his changed demeanor and reduced strength.

  The next summer I traveled with Jeffrey, five and a half, to visit his grandparents in Columbus. Dad and I took him to a playground one afternoon at the height of the stultifying humidity, watching his exuberant play on the swings and beams. Dad got an eager expression on his face; I could tell that he wanted to walk out onto the huge wooden climbing structure to join his grandson. Yet the instant I tried to help him up the small stairs to the platform, he became dead weight in my hands. He retreated with baby steps.

  “What’s happening, Dad?” I asked softly.

  “It’s the ‘fraids,’” he replied, once he’d backed down. “When I was a little boy and something frightened me, I called it getting the ‘fraids.’” Being afraid was now compounded by a growing inability to move. Firmly implanted on the sand, we watched Jeffrey careen through the structure.

  Once more I took on the role of advocate. Dad was seeing a senior neurologist at OSU, so I typed out a cogent life history of his episodes, treatments, and hospitalizations to send back to Columbus. No surprise: The evaluation revealed the onset of a Parkinson’s-like illness, replete with slowing, motor freezing, shuffling, balance problems, and weight loss, plus a tremor that looked different from his earlier lithium-induced one. More troublesome was the potential for Lewy-body dementia down the road, a complex variant of Parkinson’s that involves not just motor areas of the brain but regions and pathways underlying cognition. Dad was initially prescribed L-DOPA, just as Ezra had been all those years ago. Yet no miracle cure was at hand, and his decline slowly continued.

  The following year I noticed a sign at Berkeley for a conference to be held in a couple of months’ time, encompassing the history of science. Cal and Stanford historians and philosophers would present on epistemology, theory of knowledge, and the progress of scientific thought. Maybe, I hoped, Dad could fly up from Palm Springs in April, stay over at our house, and attend. But could he fly alone? Mom and I decided that, if she could get him as close as possible to the departure gate and notify the flight attendants, he might be able to manage the trip. On the phone, Dad seemed eager.

  On arrival day I drove Jeffrey to Oakland airport to meet Grandpa. In those pre-9/11 days we could stand right next to the gate and greet him as soon as he slowly stepped off the jetway. His face was gaunt, and the walk toward baggage claim seemed like a funeral march. At the escalator leading down, he inched his way to the edge of the moving stairs and started to lift his foot but stopped short, as though stricken. The people waiting behind us were clearly annoyed. I begged indulgence and the three of us slowly turned around and headed to the elevator. “I just didn’t know how to coordinate my foot with the moving step,” Dad said on the short ride down. “I’m sorry.”

  The next morning in the packed lecture hall, I couldn’t get over how many speakers and attendees knew Dad, as they came over to greet him during breaks. It was impossible to miss their expressions as they saw his changed state. The talks were impressive: How did the first experimental science emerge in the seventeenth and eighteenth centuries? What issues remain in understanding how knowledge advances? Are Kuhn’s ideas of scientific paradigms valid? Dad drifted off periodically but made an effort to follow when he was awake.

  At the end of the afternoon we slowly walked to the other side of campus for the reception. Dad was thrilled but slightly confused. On the patio of the faculty club, drinking gin and tonics with him in the incomparable spring twilight, I understood that he had attended his last academic conference.

  *

  Nighttime in Palm Springs a year later, the sky was black velvet. Illuminated from within, the swimming pool was utterly still. Dad had deteriorated further. He could barely keep his balance when he stood up. Reading philosophy was now a thing of the past. Still intact, however, was his ability to contemplate and discuss the past.

  It had been a good day. Grandpa relished the time with Jeffrey, whose happy but volatile temperament reminded him of himself as a boy. “How I wish I could go barefoot again,” he said wistfully. In spare moments, he recalled his boyhood adventures: taking the streetcar to downtown Los Angeles, serving as squad captain for his junior-high sports teams, arguing with his brothers
about economic strategies during the Depression.

  After 9:00, with Jeffrey fast asleep following dinner on the patio, father and son headed outside, as I eyed carefully the stone path and stairs. The stars pressed down from above. We paused to look toward the massive mountains to the west.

  “I’ve been contemplating,” Dad finally said, holding on to the back of a chair for balance. I strained to make out his faint words. “What a marvelous life I’ve had. Imagine the people I’ve met, the students I’ve taught, the ideas I’ve shared. Some experiences were terrifying, especially the times in mental hospitals. But every experience was revealing.”

  I marveled at his stance. Many of his experiences were of the sort that I’d tortured myself for years to fend off.

  His voice gathered steam. “In fact, I wouldn’t trade any experience I’ve ever had. Not a one!” I was silent. “What a rich life I’ve had!”

  When considering his plight I mainly felt agitation, regret, and anger, especially over the ignorant yet overly self-assured profession that supposedly treated him. How might I ever gain even a fraction of Dad’s philosophical attitude, his sense of wonder?

  We pondered the soft blue-green of the pool for a few more moments before it was time to return. I guided him by the arm in the dark as we inched our way to the front door of the townhouse.

  13

  The End and the Beginning

  With my expanded sense of mission, which included ever-stronger motivation to understand stigma, I hunkered down in my home study on a gray winter morning in 2003. My core reading that day was a book by the noted medical historian Gerald Grob, entitled The Mad Among Us: A History of the Care of America’s Mentally Ill. Provocative and authoritative, the book highlights attitudes and practices toward mental illness from the colonial period through the modern era. Periods of reform and despair, Grob argues, are cyclic rather than linear, with the social action of one era too often leading to the repression of the next. The book’s material is compelling, motivating a search for the kinds of change in mental health that might really last.