This stance is mind boggling and, quite literally, mind numbing. Stigma is another kind of madness, the worst kind of all, far beyond mental illness itself. Enforced silence—motivated by shame and advocated until recently by the mental health profession—produces disastrous consequences for all involved. Of course, disclosure to one’s family, friends, or colleagues is always a matter of timing, judgment, and prudence, but the fight must take place against the default assumption that opening up is disastrous and must never occur
Once I turned 18, perhaps Dad reasoned that I was no longer a child, so that any disclosure at that point wouldn’t go against the medical advice he’d received. Or maybe he was finding it impossible to pretend any longer. Given the one-way nature of our conversations, I never asked. But if I could reconfigure history, what might our family have said all those years ago about Dad’s condition? I can’t really imagine, because of the magic act we tried to pull off every day. But saying almost anything might have taken away the sharp edge of blame, anger, and terror that were my barely acknowledged companions.
My colleague at Harvard Medical School, the noted child psychiatrist William Beardslee, has developed a form of family therapy for situations in which one or both parents has a major mood disorder, like depression or bipolar illness. Beyond the individual treatment needed by such parents, usually including medication and psychological intervention, this therapy targets the huge tendency to hide what’s happening inside the family. In other words, it directly addresses silence and stigma.
During the 16-week program, the therapist encourages the parents—initially without the children present—to work to find clear language to capture the family’s experience. Understandably enough, most parents initially resist such disclosure: They’re too young to understand; wouldn’t it just hurt them? Why would we open up about such a shameful topic? Yet through prompting and coaching from the family therapist, the parents develop a narrative their children can comprehend. Eventually the whole family convenes and the therapist guides the parents to talk about Mom’s absences, Dad’s anger, family drinking patterns, time off work, or whatever the particulars may be.
The overall goal is to prevent what typically happens, which is that the children blame themselves. In fact, when families experience problems but nothing is said, kids usually take on the blame by internalizing the conflict. This stance may appear puzzling, but at least the child maintains some control over the situation—and this perspective is probably better than believing the world to be a cruel, random place. Yet such responsibility obviously increases the child’s self-blame and guilt, enhancing later risk for depressed mood. If open discussion of the family’s realities can occur, this process of internalization may be headed off at the pass.
Children in families receiving this form of family therapy function better immediately afterward than children in more traditional family interventions, with improved social and academic performance and better overall adjustment. Even more—and intriguingly—their risk for developing mood disorders is substantially reduced up to four years later. The implications are remarkable: Although part of the risk for mental illness is transmitted via genes, and strongly so for bipolar disorder, another part of intergenerational transmission is related to communication. Even in our biochemical age, breaking the silence is essential.
*
When I was a sophomore in college, back home for another family visit, Dad discussed his second major episode, which led to his hospitalization at Byberry, just after he’d received his doctorate from Princeton. A particular incident stood out. One Sunday, the only church service that Byberry offered was a Catholic mass. He must have been feeling pretty good about himself, Dad reflected, because he made a loud joke from the benches serving as pews about the priest, his chalice, and what he was doing to the assembled staff and patients: “He’s jerking us off!” Dad shouted to the fellow worshippers.
When manic, people see humor and irony in non-traditional, often sexualized ways and typically lack any inhibitions about sharing their perspectives. But the audience was outraged rather than amused. That same night, Dad continued, his peers captured him, with one of the attendants standing guard, and took him to an occupational therapy room. Securing the door, they placed him against a pommel horse and beat him. It became a weekly ritual. In the aftermath, his wounds were covered only by his ragged uniform.
Stunned, I listened in silence. But I also wondered privately whether this was the truth or part of a delusion, with Dad’s schizophrenia—the illness with which he’d been diagnosed for 35 years—doing the talking. I wanted to believe everything he told me, but maybe his recollections were tainted by his madness.
It was at Byberry, Dad continued, where he first received barbiturates to calm him down from agitated behavior, along with insulin coma therapy. This primitive treatment involves giving the patient enough insulin to induce a temporary coma or even seizures, under the now-discredited theory that people with epilepsy are immune to contracting schizophrenia. It became popular in the United States during the 1940s, largely because patients with schizophrenia seemed unresponsive to traditional talk therapy and because ECT—the direct induction of seizures through shocks to the skull—was not yet in wide use. ECT had its own set of side effects, especially regarding memory, as Dad (and Mom) would learn during his episodes and hospitalizations in the 1950s. ECT can be an extremely effective treatment for serious depression, if done in the right ways, but back then it was often used barbarically. In the end, insulin coma treatment failed to provide any real evidence of benefit, incurred risk for potentially severe side effects, and terrified patients once they awoke. All in all, Dad’s accounts of Byberry were horrific.
While a grad student in Southern California during my late twenties, I attended a family reunion at the home of Randall, Dad’s older brother by nearly five years. Randall was the one who’d scoured the Encyclopedia Britannica while bedridden as a pre-teen. He was a quick, jittery, and sometimes anxious man with a vibrant mind, keenly interested in his chosen field of international economics. Knowing of my interest in psychology and acutely aware of his younger brother’s psychiatric history, he pulled me aside and launched into a protracted story. Throughout his talk, his face revealed the intensity of his remembrance.
In the winter of 1945 he’d been working in Washington before becoming a consultant to the Federal Reserve Board—and later, a distinguished professor. As the winter progressed, he recounted, the Allies were pressing eastward through Europe following the brutal Battle of the Bulge. On the Eastern front, the Russian army was ever closer to Berlin. Each day, news of imminent victory arrived. In March, however, he received an urgent telephone call from the longtime graduate dean at Princeton, where, a couple of years earlier, Randall had received his doctorate. To his complete surprise, the dean was in tears. Knowing that his younger brother Junior had just completed his own Ph.D. there, Randall was on full alert.
“Your brother Virgil is being held at Philadelphia State Hospital, called Byberry,” the dean reported grimly. “Reports are that his behavior became quite serious shortly after he received his degree.” Moved by the dean’s emotion, Randall recalled September of 1936, when he saw his younger brother splayed on the pavement below the porch roof in Pasadena. Had it happened again? Could Junior actually be in another mental hospital?
Shaken, Randall approached his superior, a female general, asking for permission to purchase a series of highly prized gasoline ration cards. His objective was to spend his single day off each week, every Sunday, driving to Philadelphia to visit his brother. Contact back at Norwalk eight years earlier had been sporadic at best. This time, Randall told me with emphasis, it would be different. Each Sunday he awakened early and made the long drive to the huge facility located in the countryside. His plan was to keep Junior company and observe his behavior. By communicating his notes of weekly progress to the staff, perhaps he might facilitate an early release.
The first visits wer
e tense, as his brother was clearly disturbed. Randall despaired of a long bout. Yet by late April he detected a glimmer of hope, as Junior’s preoccupation with sin, religion, telekinesis, and Fascism appeared to be fading. From Washington, Randall sent a telegram to the ward chief and asked that his brother receive a day pass so that the two of them could have lunch together outside the facility. Randall’s observations might continue to build momentum for discharge.
Full of optimism when the request was granted, he arrived before noon. Walking through the imposing entrance corridor and finding a spot in the waiting area, he searched the faces. But when Junior came into view his eyes were strangely veiled. Randall kept his thoughts positive—after all, Junior had not left the facility in over six weeks—and they departed for the parking lot, mostly empty except for staff cars. Not so many visitors to an imposing state mental hospital.
As he continued his narrative Randall looked puzzled, recalling the growing apprehension he experienced on that Sunday afternoon more than three decades before. Something was amiss. His brother remained tense and guarded as they got into the car. Once out on the narrow highway, Junior quickly spotted a road sign and then a billboard, calling out the words in German, his voice shrill.
“What’s going on?” Randall inquired with a start.
“There is danger,” his brother replied back in English, his voice reflecting mortal threat. “What danger?” Randall countered, trying to conceal his exasperation. “We’re on a day pass, driving to get lunch. We’ve just left Byberry. Remember?”
But Junior’s glare was ominous. “Stop your lies. We’ve departed a concentration camp in Germany. How can you think of assisting my escape?”
Randall struggled to remain calm. “Junior, this is absurd. We’re outside of Philadelphia, in Pennsylvania. Come to your senses,” he begged.
“Silence,” Junior cautioned, his voice commanding, before issuing more German pronouncements and then, back in English, warning that if he were found missing, a search party would be sent. The idyllic drive was fast becoming a nightmare but Randall pushed for reason.
“We’re near Byberry, Junior. There is no concentration camp nearby.”
“We must return,” Junior shouted. “We’ll both be shot if I’m outside the camp!”
Desperate, Randall made one more plea, yet his brother was having none of it. Throwing up his hands, Randall found a cross street, reversed direction, and drove slowly back toward the hospital. So much for this week’s progress notes, he thought bitterly.
Once the car was parked in the lot, Junior bolted for the entrance. Back in the corridors, he avoided eye contact with staff. Randall hurried to follow but the visit was clearly over. In Junior’s mind, any further communication with a collaborator would only increase the danger. Despondent, Randall called out that he’d return in a week but wasn’t sure that his brother even heard.
Randall and I had been in a side room, away from the rest of the reunion, for some time. It was time to rejoin the group. Summing up, he said that on the road from Byberry, the drive back to Washington was endless.
*
I was now in fourth grade and Dad had been back for a few months. My frame of mind was better than the year before during his seemingly endless absence. On a cool fall afternoon he pulled me into the driveway as soon as he arrived from campus. “Hold out your hands in front of you,” he said, pausing while I lifted my arms. “That’s it, make a ball of air.” He was starting some kind of science lesson, maybe a deeper lesson, too. With him it was hard to tell.
“How many molecules of air, how many atoms of oxygen or nitrogen composing these molecules, do you suppose are inside your hands? Can you make a guess?”
I knew that atoms were small. “Umm, maybe millions?”
Dad shook his head. “Many more,” he replied, a look of wonder filling his eyes. “The answer is probably closer to quadrillions, even quintillions. Imagine! More than the grains of sand on a vast beach, on scores of beaches.” He went on to say that most of an atom is empty space, the nucleus and electrons tiny compared to the vast area in between, like planets orbiting a sun. “As Einstein said, the nucleus is like the fly inside a cathedral,” Dad continued, my everyday world long vanished. “The world around us is full of miracles,” he concluded, “beyond our powers of observation.”
Making small talk at family gatherings with a strained expression, Dad might answer politely about the weather or what might be served for dinner. Yet when speaking about science or different eras in history, his voice filled with quiet exultation. One version of him was slightly lost at sea, struggling to maintain a presence in the world everyone else inhabited, but the other—impassioned and persuasive—sought the essence of existence. When I thought about his two styles a chill shot up my spine, though I couldn’t quite say why. I didn’t yet understand that his first, awkward self was tainted by a fundamental belief that he was different from the rest of humanity, flawed to the core, a deviant mental patient.
Mom was now far busier, as she’d returned to Ohio State to earn a second Master’s degree and a teaching credential, with the goal of instructing English and history to junior high school students. I had no idea of her deeper reason or of her futile visit to the attorney downtown a couple of years before. In fact, her decision seemed progressive, now that the sixties had begun: a step toward women’s rights. Out on the picnic table in the backyard during warm weather, I saw Dad sitting next to her as they craned their necks over the text on transformational grammar from her linguistics course. Patiently, he explained the intricacies of Chomsky’s analysis, the diagrams appearing like spider webs. Their heads and torsos tilted toward each other as they shared their deep concentration.
Back then, I zeroed in on a landing strip of planning, school, and athletics, aiming right for the middle. Like a medieval map of the flat earth, the world ceased to exist beyond the controlled borders of those three activities. Everywhere else the unspeakable lurked. Something lay in waiting just beyond my controlled life but I couldn’t imagine what.
Night times were still hard. The swear words didn’t come into my mind like the year before, when Dad was absent, but I worried that if I couldn’t sleep I’d become desperately ill. The fear clung to me like a chronic fever. Just like Dad, I reasoned, maybe I needed rest. One evening in the late fall I fell asleep quickly but in the middle of the night sat bolt upright, with my heart pounding. Stricken, in the confused state of the wee hours, I was convinced that I’d not slept at all, overwhelmed with the belief that if I lay there any longer my heart might stop. I jumped down from the top bunk, rushed across the carpet, and banged hard on my parents’ bedroom door. I should have kept quiet for Sally, sleeping in her nearby room, but I couldn’t help it.
“Mom! Dad!” I shouted, sobbing. “I’m getting sick. Help!” No answer; I pounded once more. “Please, help me. I might die.”
After a moment, I heard a soft padding sound. Opening the door slowly, Dad peered out. Wearing pajamas, his eyes ringed with sleep, he whispered: “What is it?”
“I’ve been up all night. I can’t sleep. I don’t think I can live.”
He paused, turned, and spoke softly back in the direction of Mom. Then, gesturing for me to lead the way, he followed me back to my bedroom. After I climbed the ladder up to my bunk, he rubbed my forehead.
“Tell me again what’s troubling you,” he asked quietly. Half choking, I blurted it out. “I’ve been up all night; I can’t sleep. I could die by morning.” I began sobbing again.
He pondered for a moment. “There’s no need to worry,” he said calmly but with assurance. “Simply resting helps your body; it’s perhaps 70 percent as good as sleep.” Picking up force, he continued.
“You may not know it, Steve, but you live in an age of miracles. Even if you were to become sick, doctors can now treat many diseases with new medicines.” When he was a boy, he continued, antibiotics and other current medicines didn’t exist. Many people died, some tragically young
. He reminded me that my great-uncle Corwin was on the research team discovering the mechanisms of antibiotics for treating tuberculosis. “Imagine the time before such medicines,” he continued, “the rates of death were tragic.”
He summed up: “Why, with the progress being made today—with these miracles of modern medicine—if you take good care of yourself, you’ll probably live to be 100 years of age!” In a flash the ceiling retracted, like the one above the astronomer in my first-grade drawing, starlight pouring in from the observatory’s opening. A hundred years!
Dad began to talk about additional discoveries but I’d already started to drift. He soon said good night and walked back across the carpet. Nearly asleep, I held the number in my mind. Not eternity, perhaps, but 100 years seemed a vast span.
As an adult I began to consider my father’s interest in the miracles of modern medicine he’d described. Undoubtedly, he was wondering why no such miracles had ever been available for him. Why were his mysterious episodes so unexpected, so shameful—and so far removed from any satisfactory medical care? He felt, as he told me in his later years, that no one understood his plight and that he was not even deserving of help.
When individuals belong to groups that receive strong stigma and inevitably hear society’s messages about their group, there’s a good chance they’ll absorb the underlying content. In other words, social stigma transforms into self-stigma, completing a vicious cycle. Such internalized stigma—the view that one is fundamentally flawed and unworthy—carries devastating consequences. It’s bad enough to be part of a group outside the mainstream. But when individuals are convinced that their own weaknesses and moral failings lie at the root of the problem, things hit bottom. Not surprisingly, in the case of mental illness, high levels of self-stigma predict a failure to seek treatment, or early drop-out if treatment has actually begun.
Another Kind of Madness Page 9