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 po
werless 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.
Another Kind of Madness Page 16