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 t
he 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.
Another Kind of Madness Page 17