The following September, a few weeks after most school programs had started, the Therapeutic Center opened, a brand-new program for a dozen kids who’d been either thrown out of the Boston Public Schools or never allowed to start because of their intractable learning and behavior problems. Massachusetts was the first state in the nation with an inclusive special education law, providing a model for the federal counterpart to start the following year, 1975. A few weeks out of my second summer at Camp Freedom, I’d somehow been hired by the Massachusetts Mental Health Center as the center’s coordinator. I sported a seventies-style mustache and headband, but my intensity for this kind of work brimmed just beneath the surface.
Yet had twelve children and adolescents more different from one another ever arrived at the same building? Who was more bewildered: the kids themselves, their parents, or the staff who’d soon be teaching them?
Angela was seven, with black braids capped with pastel beads meticulously prepared each morning by her devoutly religious mother. Clapping her hands with her head bobbing, she strutted into the classroom, singing Stevie Wonder, Otis Redding, scat beats, and Motown. Her uncanny voice then shifted to gospel songs she’d heard in church on Sundays, which she echoed perfectly. She looked everywhere except in the eyes of the person across from her, smiling radiantly and closing her eyes as the sounds of her singing overtook her mind and body. But just try to get her to pay attention to something other than music and she flailed on the floor, lashing out as though tortured. She was encased in a glass vial, where the beats reverberated. Who might get inside her autistic shell?
Then there was James, 15, sturdy and freckled, rigid as a statue from the tension coursing through every muscle in his body. He gritted his teeth while his shoulders and arms twitched spasmodically, whether from inner agitation or the powerful antipsychotic medications he was taking, no one was sure. When a teacher gently tried to usher him into his classroom—“OK, James, it’s time to start”—he screamed at the top of his lungs, his voice cracking with rage, slamming his fist into the closest object he could find: “Don’t say OK! Don’t say OK!” What did the word signal to him? It was a mystery, but people quickly learned that certain terms just couldn’t be used with James. He’d destroyed a room or two of his clapboard Boston house.
Victor now arrived, eight years old and adorable, coming from a home of six siblings, all of whom had been neglected and abused by their drug-addled, cognitively delayed parents. He’d cuddle in your lap and shoot baskets at recess with an infectious laugh, but printed words on a page looked like hieroglyphics to him. The odds of his ever learning to read were long. Was it the beatings, the days with almost no food, or the genes he inherited? Or some toxic combination? When he lost control of his emotions, he sobbed a single plaintive cry: “Sorry, sorry, so sorry, sorry, sorry, so sorry.” It was undoubtedly the only term that might have prompted his family to stop the hitting, at least temporarily. Where would Victor end up?
Ernesto was there, too, nine years old but spending most of the day in a fetal position. He’d never spoken and probably never would, but his intense brown eyes let you know that there was a lot going on inside, even though a lack of oxygen after birth had deprived him of any means of communicating in words. Every once in a while, especially at home, he would come alive with animation, pointing and gesturing, imploring his siblings to tickle and feed him as he giggled uncontrollably. But how would he adapt to school? He’d never been to one for more than a few days. Away from his adoring family, he seemed bewildered, reclining into his tuck, groans and chirps forming in his throat, his bird-like frame retreating from the world.
What about Ronald? Nearly 17, he sauntered into the classroom, took one look at his peer group, winced, and then reached for the knife in his pocket. A knowing look from his teacher, Phil, told him to hand it over so he grabbed a pick instead, tending to his hair. What am I doing here with this group? How did I end up with these crazy kids? His expression spoke volumes. Maybe it was better than juvenile hall, but he seemed incredulous. Am I this messed up, too?
There was another girl, Darlene, 13, from a housing project. She spoke with a gorgeous Southern drawl but struggled mightily with school subjects, working barely at a second-grade level. Her disruptive seizures were poorly controlled. Some of the program’s medical consultants wondered whether her overstressed and under-resourced family made sure she took the pills regularly; her IQ was too low to remember herself. Still, over the years she’d had enough Dilantin that the tell-tale signs of deteriorating gums were in clear view every time she emitted her dazzling smile. She knew that her teeth were too big for her mouth but couldn’t squelch her delight at being alive. Would she ever learn to fend for herself?
Over the first weeks, we established classroom routines, as our diligent young staff worked overtime each day. A reward system was implemented, linked to lessons that were geared to each individual’s level. Signs of progress began to appear on the program’s behavior charts. I supervised the teachers, made home visits, and conducted parent management sessions after school. The responsibility was enormous, but this kind of work was exactly what I’d been waiting to do all through college.
Darlene attended the adolescent class. One morning she arrived alongside her peers in a fog, dazed and slightly agitated. In class, she stood up, almost staggering, and wobbled. Phil, her head teacher, quickly took her arm and walked her to the hallway. A moment later, as if on cue, it started: She convulsed and collapsed in a heap, the contortions rocking her body, as a grand mal seizure overtook her. Shielding her from harm, we got her into the office, where she lay semi-conscious. But moments after she revived, her eyes rolled up toward her forehead and she convulsed again, the flopping movements possessing her.
Status epilepticus, Phil and I both knew—the pattern where one grand mal seizure closely follows another. If the chain doesn’t stop, brain injury and even death can result. The paramedics rushed in within minutes of my call. Phil followed the emergency squad in his car, while the other teacher and I covered the rest of the kids until the school day ended.
Hurrying to her room in the vast Harvard Medical School complex that afternoon, I arrived to hear the doctors plead with her mother to ensure that the meds were taken every day. Darlene was hooked up to an IV drip of Valium, her huge smile back in place despite her obvious confusion. Clinical reports were starting to come in that this “tranquilizer,” first introduced a decade before, could be addictive if prescribed indiscriminately for anxiety or sleep, even though it had been originally touted as a non-addictive alternative to barbiturates. Yet in front of my eyes it was saving her life, shutting down her uncontrolled seizures. Another miracle of modern medicine, but for Darlene and so many kids, far more basic miracles were needed: communication, knowledge, and understanding. If only there were enough staff, programs, science, and dedication to go around.
I wondered whether I possessed the qualities to make a difference. In fact, I was awaiting miracles not only for the kids at the Therapeutic Center but for myself. The way it was going, I might need one or two.
* * *
The previous June, stark white against the deep-green lawns, massive tents filled Harvard Yard, as golden sunshine infused the scene. More than three hundred graduation ceremonies into the sequence, I was somehow part of it, marching with the tiny group of summa cum laude graduates at the front of the procession. I got called to the stage to receive the Ames Award, for the graduating senior best blending social action and scholarship. Among the throngs were Mom, Dad, Sally, and Grandmother, who’d all driven out together. The best part was that I’d one-upped those New England prep school guys who thought they’d owned the place since freshman year. I secretly gloated: Midwestern public-school kid makes good!
Yet no academic honors could replace the massive holes filling my mind and body. Any plaudits I’d earned were quickly worn thin by my nights of torture. The thread of my life was unraveling. I was maintaining my weight, barely, but what would all the learning be worth if I couldn’t help Dad? Who else was going to solve the massive problems he’d experienced since he was a teenager? I kept asking myself which group was worse: the psychoanalysts who thought they could cure him through figuring out his fantasies or the wave of biological psychiatrists who were sure that the right pills and jarring shocks would restore him to health? Where was the needed integration, or any admission that things were actually a lot more complex than these single-minded perspectives would indicate?
Amid the pines of Camp Freedom for a second time following my graduation, I hoped that one day I’d be able to conduct such programs, training young staff, advocating for society’s powerless citizens, and performing research on child and family outcomes. But would I ever get to that point? Each day, following the morning classes and languid afternoons as the kids went swimming in the lake, I searched inside myself for signs of congestion and sleeplessness, bracing myself for the unspeakable ritual in the communal bathroom—everyone else, I prayed, long asleep. But who was I kidding? The self-induced gags and retches were getting more violent, and the thin wooden walls of the wooden outhouse in the woods masked no sound at all.
By day, I brimmed with energy and resolve. By night, I was increasingly unable to rein in my mind. Perched on a steep slope, my fingers tearing at grass and stones, I doubted I could stay above the darkness. Even more, the mountains and lakes of New Hampshire gave me more feelings of rapture than most relationships I’d been in. How would I ever form a deep connection?
Halfway through the program, Bruce Baker called me into the director’s office. “How’s your summer going, Steve?” he asked brightly. “Any job prospects yet for the fall?” Weary, I shook my head, concerned over any future I might have at all. He told me of a call he’d received from a psychologist in Boston who was looking for a Master’s-level person to head a new school program. He told her straight away that there was a fresh B.A. with lots of experience right at his camp. Before I knew it, I was down in Boston for an interview. By mid-August, the job as coordinator of the Therapeutic Center was mine, and the intensive planning began.
Prior to the school’s opening, I took a short trip to Ohio. Dad and I didn’t plan our sessions together. Instead, the themes flowed from talk to talk. He was now discussing his times in mental facilities in Ohio. “Sometimes, teaching a class, my mind might begin to soar. My ideas would become highly irrational. I believed that I held the key to the secrets of philosophy. Soon, I was back on the ward.” Each time, he said, was strangely familiar. I now understood: Dad expected the episodes, considered them inevitable.
He went on to speak about his brother Bob. “His migraines may have been the worst in the whole family. All the brothers had them, along with our father.” Years earlier Bob had begun to prescribe himself pain medications—as an M.D. he was able to do so—at first oral barbiturates but later self-injections. Complications eventually set in, as a clot developed near the injection site. Finally, his leg had to be amputated.
What a difference from the cover story about Bob’s sedentary life I’d heard in junior high school. At last I was peering behind the heavy covers that had blanketed most of my life. What more had happened that I never knew?
“As a result,” Dad continued, “he’s now showing signs of kidney failure. He’ll begin dialysis soon. Because of the expense of going to the hospital, he’ll do so at home.” Dad’s savior and my advocate, Bob was now reduced to this. In our family, even those who made it big might be headed for a fall.
But my chief concern was solving the puzzle of Dad’s diagnosis. Time was getting short.
Penelope and I had split up. A couple of friends from Camp Freedom asked me to go on a three-day mountain expedition over Columbus Day weekend, a needed break from the rigors of getting the new school program off the ground. We would spend most of our time above the treeline in the Presidential range of northern New Hampshire. Yet what if I felt congested at night amid the highest peaks on the East Coast, with no place to purge myself? The signs on Mt. Washington revealed that the strongest winds on earth, 231 miles per hour, had occurred there. But the mountains beckoned.
Early snows had hammered the high country, the soft carpet of yellow and orange leaves at the trailhead giving way to freezing air as we continued our ascent. The crystalline blue sky glistened above us, while sweat accumulated in our inner layers despite the cold. We huddled in group cabins for campstove dinners, the stars overhead pinpricks of light from eons away. Tired but jubilant, I somehow made it to sleep. The next day, we hiked past Mt. Adams to Mt. Washington, snow drifts swirling in the howling winds. The clarity of the air was astonishing. Far below, in a 360-degree view, lay Canada, Vermont, Massachusetts, and, just visible at the horizon, the Atlantic.
At least I had a refuge against the frantic, dead-end places in my mind. Deep in nature I found a momentary truce. But like most truces, it wouldn’t last.
* * *
Change was in the air. His junior faculty stint at Harvard over, Baker was off to UCLA. The board of directors found a new director for Camp Freedom. I was offered the position of program director, second in command, to coordinate the staff and oversee the treatment programs.
I met Celeste over Thanksgiving weekend, under frigid skies at a farm outside Boston. Long shadows from the trees and farmhouses covered the blinding snow. Petite, athletic, forthright, and fun, she was going to be a doctor of some sort. I desperately wanted to see her again. She must have felt a spark, too. In the winter she and I and a couple of others drove to Camp Freedom for the weekend, the camp empty except for the snow covering the ground under the birches. The denuded trees were tinted gray and silver against the hills and mountains. Cross-country skiing across the ice-encrusted lake provided a counterpoint to the canoe trips of the summer. The flames in the office fireplace kept us warm all night. Punch-drunk in love, I was giddy with connection.
“Tell me about your family, Steve,” Celeste asked me one day.
“Well,” I answered, “Dad’s a philosopher and Mom teaches English at Ohio State. My sister’s going into speech therapy.” But I couldn’t get out much more, with the stakes this high. What might she think about our family?
“Tell me more about you,” I asked, “and come closer when you do.”
My drive for connection was a blind hunger, but how real could it be if I wasn’t all there myself? Keeping my evening rituals from her was getting to be impossible. The tightrope I traversed was as wide as a piece of string.
Back in Columbus over spring break, I talked with Dad once more before he headed off for a philosophy conference. Pacing through the house, I couldn’t bear waiting another moment to see Celeste. I called the airlines and advanced my ticket, flying stand-by and making my flight by minutes. From Logan airport, I rushed over to her place.
“What are you doing back?” she said, surprised that I’d made the effort. Her eyes sparkled. We held each other. For a moment, the longing inside me felt as though it might overcome any void. “I need to see you all the time,” I stammered, surprised by my conviction. “We need to make love right now.” Slowly her eyes narrowed. Too late, I realized what was coming.
“Steve, this is too much,” she said with a touch of defiance.
“But Celeste,” I pleaded, “don’t you feel the same way? I know you do.”
“Not like that,” she replied, her voice steely. “I need room.”
I grabbed my bags and left for Cambridge, the wind knocked out of me as though I’d been blindsided on the football field. Burying troubles in the intensity of love, as if love were mainly about escaping pain, wasn’t the answer.
* * *
In the lush days of June I was back again in New Hampshire, this time as the one in charge of the staff, conducting orientation week. To cap off preparations, my ultimate task was to complete the master schedule. Past program directors had pulled an all-nighter to construct it, integrating the pre-camp evaluations of each child to form a huge grid of kids grouped by skill levels, classrooms, and teachers. It couldn’t be finalized until late in the week, when all the information was in place. But the deadline was urgent. Over the weekend the first cars would pull up, anxious parents huddling around their offspring before leaving them on their own for seven weeks.
Yet I’d never stayed up all night in my life. I’d always completed assignments far ahead of time, anything to prevent being up too late. But it was now or never, the whole program depending on this crucial night. With papers and reports scattered across the plank desk, I reworked the huge chart over and over, no small feat prior to personal computers.
The clock radio showed 4:30 a.m. Trying not to panic, I reminded myself that I’d pushed myself to the limit out of sheer need. I decided to take a quick look outside, then get a few hours of rest, despite my worry that I’d sleep through the bells and miss breakfast, ignoring the pungent smoke from the stone chimney in the massive stone dining hall.
The small cabin was located right on the shallow beach of Ossipee Lake. I opened the front door and peered out over the plate-glass-smooth water. Not ten feet in front of me, wisps of mist danced in columns all the way across the bluish-black liquid, two miles to the opposite shore. I stared as the sky gradually lightened overhead above the primeval scene. Turning east, my eyes were drawn to the color, a glorious blend of off-white, yellow, pale orange, and purple, as the dawn sky slowly gathered toward a deep red-orange directly over the summit of the low symmetrical mountain on the other side of the lake. The only sound was an occasional cry from some early-morning bird.
Pivoting to face the camp behind me on the shore, I saw the mass of huge pines towering above the sandy grounds below, as the first shards of daylight penetrated the shadows. Scanning back again to the lake, the sky ever lighter, I took in the entire scene once more, overwhelmed by the monumental nature of the world around me. Able to hold my gaze no longer, I walked up the three steps to the cabin, closed the door, and drifted off to sleep for a few precious hours.
My double life—energetic program director by day but defeated and tortured soul too many nights—was exhausting. Added to the mix were the deep problems emerging at camp. The new director was rigid in all the wrong ways, deciding on a disastrous course of action after failing to consult the needed players. Parents were upset, staff were tense, and the kids weren’t learning as they should have been.
Mid-summer, the board convened a crisis meeting, faces grim as the members emerged from their car journeys from Boston and southern New Hampshire. The next day, Baker and the board president called me to a meeting. “Without revealing much detail, Steve, we can tell you that we need new leadership,” they said grimly. “Would you be willing to become the acting director for the remaining weeks of the program?”
Shocked, I said yes. A hundred extra pounds had just been added to the barbells I was struggling to keep aloft. That evening, a brilliant doctoral student and longtime staff member of the camp pulled me aside with a gleam in his eye. “I just want you to know, Steve, that as long as everything thrives at the camp when you’re at the helm, I’m right there behind you. So is everyone else.” He looked into the distance. “But when things start to slide, it’s just you, buddy. I’m out of here.”
Trying to laugh at his sarcasm, I ignored the shiver coursing through me. I moved into the director’s cabin, studied the financial books, and secretly prayed for no incidents before the last camper pulled out of the dusty parking lot in mid-August. At the final staff banquet, my sigh of relief was heard throughout New England.
* * *
As late summer turned into fall, rings appeared under my caved-in eyes. I was down ten more pounds since college. “Are you OK?” staff at the Therapeutic Center asked as we began our second year. The nighttime rituals were increasing in frequency and intensity, though I kept those secret.
We’d hired a new teacher, Roberta. Two years older than I, she was mysterious, fascinating, political, and exotic. She’d lived in San Francisco, studied Gurdjieff, and planted community gardens. She relished teaching the toughest kids in the program. Wise and thoughtful, would she be passionate, too? After getting to know her, I walked by her apartment in North Cambridge in the early fall, bracing myself to ask her out. To my amazement, she agreed.
It was time to take a risk. “I should tell you something about my family, especially my dad. He’s told me about his experiences in mental hospitals. He’s had quite a life.” I looked down. “I have this idea that he’s been misdiagnosed for many years.”
“Tell me more,” she replied, not a hint of judgment in her voice. Tentatively at first, I even mentioned my nighttime torture sessions. As we continued talking, half ashamed of my straight-and-narrow life, I told her how I admired the risks she’d taken. But she came right back. “You’ve taken different risks, but risks just the same—the programs you’ve run, the responsibilities you’ve had.” Deep in my bloodstream, pride welled up.
In late September, back in my apartment bedroom, another doomed night had begun. I’d realized since late afternoon that with my congestion, unsettled stomach, and raging mind, I wouldn’t sleep unless I once again purged myself. Near despair, I was moments away from hauling myself out of bed. But for an extra moment I just lay there. Out of sheer weariness I decided to delay the inevitable.
Once more on the verge of lifting myself up, understanding the cost to myself of any more waiting, I held still for another few minutes. It was a terrible risk: My life with an intact mind was at stake. But to my amazement, I began to sink into the sheets, a strange lethargy overtaking me. I tried to rally, nearly panicking, but then started to drift, nearly drugged. The next thing I knew my alarm clock was sounding, eight hours later. Stunned, I shot up out of whatever dream I’d been having. Hurrying to get dressed, I wondered what had happened.
I met Roberta in Haymarket Square on Friday afternoon. We walked through the crowded rows of fresh fruit and vegetables, vendors barking out prices, thick pizza slices for sale, the constant expressway noise off to the right. The day had started bright but it was now gray, misty, and cool, typical New England. Close by was the North End, where John’s father, William Foote Whyte, had written his classic, Street Corner Society, decades before. All the while I held on to a secret, a spark of warmth despite the gloom outside. I don’t have to torture myself any longer. All I have to do is lie there.
Roberta was delighted. “Let your body do the work,” she said, nourishing the tendril of hope inside me. Late that fall, I had surgery on my nasal passages. I received relaxation training and behavior therapy to condition away fears that I might not sleep. But it was all after the fact. Following that night in late September, I never made myself sick again.
I remain shocked over how bad things got during my prolonged crisis. I couldn’t have kept up the forced vomiting much longer; the physical and emotional consequences would have been dire. Was the whole thing related to a fear of going mad? Or to a kind of superstitious conditioning, based on my migraine experiences? Or was I symbolically purging the information about our family’s long-hidden curse? No matter: Stigma was the main culprit. I managed to dodge a bullet, one aimed straight for my heart.
* * *
A couple of weekends later Mom and Dad flew out. We drove to New Hampshire as the leaves reached their peak. It was the kind of autumn day I’d always dreamed about, every color imaginable framed against the royal-blue sky. They’d visited me at Camp Freedom and knew how I felt about the lakes and mountains.
On our final day it clouded over, preparing for a real rain. Dad took a nap in the car while Mom and I hiked the small, dual-humped mountain across the lake from Camp Freedom. I’d seen it a thousand times silhouetted against the eastern sky but had never ascended it. Moderately steep, it was just right for a short jaunt. Mom was eager to join.
The trail and the fallen leaves on the ground emitted a damp, earthy scent. But halfway up, Mom suddenly became exhausted. I waited for her to get her wind. “Go on up to the summit,” she said, hunched over. “I’ll poke along, and you can catch me on the way back.” I was shocked. Mom had never let up with anything she’d ever done.
I jogged the rest of the way and got an occluded view from the summit back over the lake to our camp, before hurrying down to find Mom, who was trudging forward, not far from where I’d left her. I stayed by her side as we slowly made our way back to the trailhead. A few weeks later, she said on the phone that she’d been diagnosed with bursitis, but that proved not to be the case. Within days a specialist correctly diagnosed rheumatoid arthritis. Over the next years, her medications changed from 16 aspirin tablets a day, plus low-dose steroids, to gold injections, penacillamine, and finally anti-cancer drugs, in a desperate attempt to stop her immune system’s attack on its own connective tissue.
“The stress of caring for me all those years has undoubtedly played a role,” Dad told me back in his study, his voice somber. “Her rheumatologist believes this to be the case as well.” All I could do was agree.
Mom kept up with her activities, funneling her huge empathy to become a leader in the Arthritis Foundation, serving on the national board. But the consequences were unmistakable. Her entire nervous system and immune system had been on alert as long as she’d been married, handling impossible situations without communication or support. Although I can’t prove it definitively, I’m convinced that stigma was the major cause of her system-wide, 40-year-long disorder, in which her body’s defense system attacked her own connective tissue.
The next time I saw Dad, for once I set the agenda. “Listen,” I implored. “There’s no way you can have schizophrenia.” I told him it must be bipolar disorder and that treatment with lithium would be far better for damping down or even eliminating the episodes. My own reading had convinced me of the need for a new diagnosis.
Dad had been vice-chair of the philosophy department for some years, partly, I surmised, to compensate for his decreasing rate of publications. He often seemed listless, which is how the depressions associated with bipolar illness often appear. Every night he took part of a Doriden tablet, a sleeping pill a generation beyond the barbiturates he’d received back at Byberry in the forties. Sleep problems are rampant for people with bipolar disorder—even between episodes—but the medication robbed him of natural sleep. He often drifted off during late-afternoon department meetings and took an hour-long nap every day to catch up. Even more, Doriden was potentially addictive. And what about the Dexedrine doctors had prescribed him during the late fifties and early sixties for low moods? He was lucky he hadn’t become dependent on such pills. Adding in the ECT he received while hospitalized when Sally and I were young, just how much unneeded treatment had he actually received over the years? Like dry tinder, my rage kindled. Something had to change in the mental health field—and for Dad. Finally I remembered my ace in the hole. I made plans to see Uncle Bob in California.
* * *
The decision became final. I would become the official director of Camp Freedom for the following summer. Baker was back in town from the West Coast, meeting with me about the coming program. He didn’t give long speeches, so when he launched into a talk about Camp Freedom’s first summer, eight years before, I was on full alert. A fresh Ph.D. out of Yale, he’d wanted to help children with developmental disabilities and perform research at the same time. After finding a site and creating a board of directors, he founded the camp. One of the children during that first summer had the rare diagnosis of Prader-Willi Syndrome, a genetic condition marked by major cognitive problems and severe overeating, often leading to obesity. The boy was overweight, and with the family’s permission, the camp instituted a program of caloric restriction and exercise to reduce his body mass. But the summer turned hot and, without the staff’s knowledge, he became dehydrated. Found semi-conscious in his bunk, he died.
“Then and there,” Baker said, his face impassive but with emotion infusing his words, “the camp could have closed forever.” The debates over this tragedy had been his sternest test, but he persevered. All the while my insides were doing a nosedive. The Therapeutic Center was a few minutes away from some of the world’s foremost medical centers but Camp Freedom was nearly an hour’s drive over side roads to a community hospital, as I knew firsthand from my first summer’s fever. At 23, was I ready to take on my biggest responsibility yet?
I told myself that evening that I would have to forgive myself if anything tragic occurred under my leadership. On another level, I had received this opportunity only because I’d resolved the crisis of my self-induced vomiting the previous fall. Without stopping such self-torture, I wouldn’t have had this or any other chance to make a difference.
In March, I drove out of Cambridge in my first car, a used Fiat, destination California. I stopped shaving and a beard slowly emerged, even though it never quite fully covered my cheeks. After a week I finally traversed the LA freeways, in the land of Dad’s youth. The air was sweet with the scent of blossoms but too often stagnant from the brown sludge lingering above the valleys. When the winds cleared things out, the grass on the hillsides was emerald, sparkling snow on the mountains ringing the city. How could a place be so enchanting and depressing at the same time?
My official reason for the trip was looking for new Camp Freedom staff among Baker’s UCLA students, but my secret mission was to visit Bob. He lived in Brentwood, far from the sprawling house I’d visited years before. Now on home dialysis, he sounded weary but glad that I’d called. “Certainly, Steve; let’s set up a time for you to come over.”
Sea breezes softening the air, I drove through West Los Angeles. The town house was small and elegant, but there was no mistaking the medical equipment in the next room. Bob was gaunt, his goatee not quite masking the sallow skin of his face. His eyes widened as I walked in. He and I faced each other.
“Steve, your father says that you did quite well at Harvard, extremely well.”
“Uh, yeah,” I said, looking down, “I guess so.”
“Yes, well, I think you’re being modest. So, tell me about your current work and what brings you to LA.” Explaining as best I could, I told him that I’d be applying for clinical psychology grad schools in the fall—and that UCLA’s program was high on my list. All the while I was waiting for an opening to talk about Dad. What was there to lose?
“Bob, I’ve been talking with my dad a few times a year since I started college. The main thing is that I just don’t believe he has schizophrenia. I mean, how could he get so much better the way he does in between his episodes and still have chronic schizophrenia?” I went on to say that I thought he should be on lithium. Hardly pausing for air, I emphasized that he simply had to have better treatment.
Lithium is a natural element, the lightest metal on earth. For reasons that are still obscure, the intuition of John Cade—the Australian psychiatrist who pioneered work in this area—has held up, as lithium regulates bipolar mood cycles. It alters neurotransmission in a number of ways, with its largest clinical effect the lengthening of the period of normal functioning between episodes. It’s the original, and still unsurpassed, treatment for helping to prevent a lifetime of uncontrolled bouts of bipolarity.
Now that I’d blurted this out, Bob looked down for a few moments, pensive. Had I overstepped my bounds? When he looked back at me, pain showed on his face.
“Steve, with my health issues, perhaps I’ve lost touch with your dad more than I should.” I thought of him at age 18, the first one out of the house, witnessing his younger brother sprawled on the pavement below the porch roof.
“But you mean to say that he still has a diagnosis of schizophrenia?” he went on. “He’s remained on antipsychotic meds?” I nodded. “Let me get this straight,” Bob continued, “he’s never been tried on lithium?”
Bob went on to say that my analysis was undoubtedly right. Back in 1954, around the time Sally had been born and Dad was severely ill, he reiterated that he’d been able to secure his brother an early prescription for Thorazine, the first antipsychotic drug, which had just arrived from France. “If I’m not mistaken,” he went on, “your father was the fourth patient in the U.S. to receive it.”
At the time, he said, a diagnosis of schizophrenia seemed plausible, but the field’s knowledge had vastly improved in recent years. He shook his head, whether in disbelief over Dad’s level of care or chagrin over his own lack of involvement in recent times, I couldn’t tell. He asked for the name of Dad’s psychiatrist, recognizing the name of Dr. Southwick. “Let’s call him,” Bob said, to my amazement. “Actually, it’s after working hours in Ohio, so I’ll call first thing in the morning.”
When I reached Bob the next afternoon, he told me that Southwick disclosed he’d recently taken a continuing education course on manic-depressive illness. Prompted by Bob’s call and this recent course, he’d finally realized his diagnostic error.
“That’s a switch,” I said quickly, and Bob agreed. Southwick was to contact Dad, take him off the Mellaril right away, and start him on lithium within two weeks.
I was incredulous—and seething. Was it really this simple to change a 40-year course of misdiagnosis? Yet why had it taken my 3,000-mile journey to point out what should have been obvious to an evidence-based clinician? What was the matter with the field of mental health? I felt vindicated, certainly, but my deeper emotion was anger.
I drove back East, making a stop in Columbus on the way to New England. I’d called ahead to let everyone know I was coming. Mom wasn’t thrilled with my beard but didn’t say much about it; she couldn’t really hide how glad she was to see me. With all the commotion over the unexpected visit, it was hard to find solo time with Dad but we managed a few minutes. He told me that he appreciated my having spoken with his brother Bob out in LA. Forty years too late, he’d received a new diagnosis and a new treatment.
Had I done the right thing by advocating? At least I’d done something. For a precious moment, I felt relief.
The following summer at Camp Freedom was marked by a hurricane that slowly made its way up the Eastern Seaboard, with reports of imminent destruction emerging from the camp radios and single television set. The sheriff ordered us to evacuate to the local school gym, located on higher ground. For two days I was in crisis mode, overseeing the move of the campers and staff out to the school and back again. When the ordeal ended, the storm’s winds lashing the camp’s grounds but with no major damage incurred, I felt as though I’d been run over by a small truck. Even over steak and lobster for the staff celebratory dinner, with my appetite something of an urban legend, I longed for sleep.
* * *
At a van Gogh exhibition in Paris the following winter, the bilingual catalogue discussed his self-portraits, contrasting the early ones with those he painted toward the end of his life, after experiencing searing bouts of mental illness. I was on my first trip to Europe, now that I’d resigned from the Therapeutic Center and applied to graduate programs. The catalogue described the swirling backgrounds of the late portraits while lauding his control of the paintbrush despite the chaotic forces in his mind. “Art can go no higher,” it concluded.
I stared back at the intrepid face of van Gogh and the torrent of brushstrokes behind his gaunt face. Torment and control, genius and madness, heredity and experience: These were the topics bound up with my family history—and the subjects I’d be focusing on for my entire career.
Admissions letters from graduate schools awaited my return in early April. Overwhelmed with the imminent decision, I figured that pick-up basketball might clear my head, so I headed to an outdoor court. The guy I was guarding was wearing hiking boots, heavy and intense, just like he was. After a missed shot, he forced his body over my back for a rebound. As we both went up for the ball, I felt the heel of his boot smack the back of my ankle just as my heel hit the ground. I toppled to the pavement.
When I tried to stand, it felt as though I’d stepped into an elevator shaft. Three days of excruciating pain and two misdiagnoses later, a specialist said that my Achilles tendon was torn, requiring a full-leg cast for three months and a partial cast for two more. I was destined to direct Camp Freedom for a final time on crutches. Three days late, I called UCLA to say I’d attend their Ph.D. program.
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.