Twelve Patients: Life and Death at Bellevue Hospital (30 page)

“Mrs. Torkelson had entered the room cat-like and sat down without making a sound a few minutes earlier. She went for long jogs along the East River, up past Roosevelt Island and the huge Soviet-style buildings of the Manhattan Psychiatric Center. She ran early in the mornings no matter the weather, ‘to clear my head and get in the right zone for the day.’ She would stay until late evening reading fiction and autobiographies and writing in black ink using artist’s pens in unlined notebooks. She said, ‘I have to be close to him and didn’t want to be a bother. Just please let me hang out here. I won’t get in anyone’s way.’ We were more than accommodating since so many of our patients didn’t have anything resembling the all-American family. The families of our patients were more typically fraught, complex, dysfunctional, and compromised. So the idea of having a Midwestern couple in matching J.Crew outfits, with sharp creases in their jeans, hanging around the unit for a few weeks was a minor variation on novel.

“It took more getting used to from our side but after a week she was part of the social milieu on the unit, bringing coffee, thousand-calorie half-pound all-chocolate cupcakes with red sparkler candles for a social worker’s engagement. The couple was very discreet. They studiously avoided other patients’ business and affairs. I ended up talking to her when I had a moment. Even when we weren’t discussing Jeffrey, he remained a heavy black storm cloud over everything said and not said. She was writing about her son’s illness, tracing it back to her pregnancy. She was racking her brain for clues missed, opportunities squandered. A mother’s guilt on hyperdrive.

“ ‘He was always a complicated kid,’ she told me. When and where? Her versions of events came out at first tentatively, then more assertively. ‘He was very artistic and creative even before first grade. But he needed me with him and got frightened easily. So I took him everywhere after school and on weekends until he went off to college. Over the years he did very well in school and participated in many activities and we traveled together a lot. Maybe too much,’ she said hesitantly, weighing her words carefully. She spooned them out in small doses.

“I asked about his emotional control: Was he easily upset, irritable? Could he relax, calm himself down? I had touched a button. Both
parents started to talk at once. At that point it was clear that Jeffrey had been a handful, a kid who burst into uncontrollable rages for no apparent reason. His distress escalated until he wore himself out. They had experienced him as both tightly wound and at a high-normal range of intelligence. He displayed a sensitivity both artistic and scientific. They provided a very tight web of family interactions and participated in all aspects of his life. It wasn’t clear much separated his life from theirs even when he went through puberty into full-blown adolescence.

“Now Professor Torkelson took up the narrative: ‘He was a very irritable preteen. Sometimes that lasted months. Then it would suddenly wear off and he would be fine. During those bad periods he didn’t want to see any friends. Stayed in his room, drawing and reading. We would hear him puttering in the middle of the night in the kitchen. He had trouble sleeping for months on end. Then we would have a holiday and he would melt down in front of family and friends and completely lose control, thrashing and banging his head against a wall, crying uncontrollably, just losing it. We would rub his back, read to him, and gradually, if we were lucky, he would get back to his baseline. It was like it never happened. We lived on edge, always expecting something to happen.’ This was a common story I had heard from so many parents. The emotional regulatory system had short-circuited. The ultimate diagnosis was unclear. Too soon to tell.

“ ‘We took him to the best specialists in Ann Arbor, to Chicago, even to San Francisco and the Mayo Clinic,’ continued Professor Torkelson. ‘We heard a lot of different diagnoses. There weren’t two that were the same. He was a very sensitive kid and seemed normal in many ways, whatever that was.
Just let him grow out of it
was the advice from the head of child development at Stanford. And from a Chicago specialist,
Your son has serious developmental issues that are indistinct—undifferentiated
was the precise term she used—and could develop into anything and everything from depression, to ADHD, to borderline personality disorder, to drug addiction. No one mentioned schizophrenia.’

“ ‘Everyone wanted to know if he was sexually abused,’ Mrs. Torkelson interrupted. ‘One doctor spent an enormous time trying to
recover his memories of childhood sexual abuse. And finally one day they did… with a babysitter who looked after him for a year when he was about four years old, really a nanny-type person, a totally lovely human being. It was inconceivable to us that this had happened. But the moment was difficult. It undermined us completely. We doubted everything from our parenting, to our love for our kids, to our marriage.’ She was at the edge of her seat and agitated, wringing her hands at this point. The professor waited to make sure his wife had finished and then continued, ‘It was very difficult. Just at this time in California, there was an epidemic of child abuse cases coming out in nursery schools and day care centers. Prosecutors were out for blood.’ A national contagion, it spread and caused a lot of damage. Of course it was disproven, but not before it took down a lot of careers and lives in a modern version of the Salem witch trial exorcisms.

“Mrs. Torkelson picked up the thread: ‘We were confused and didn’t know what to do. Maybe the doctor was right? But something held us back, and we just let it sit there never quite sure. It made Jeffrey more anxious.’

“ ‘And of course there were all the questions about whether there was domestic violence.
What did he see, witness?
The questioning implicated us deeply in his mood swings. We started to go to therapy ourselves. Our marriage had never been a problem. We never thought so at any rate. We had doubts and even considered splitting up at one point.’ The less professorial professor emerged, like a tortoise poking its head out for a peek around. He glanced at his wife, checking to see if it was okay to have emoted. She gave off no signals I could detect, and I figured they were past some private marital pain. Maybe it was a relief to have a diagnosis. Any diagnosis. A real road untraveled lay ahead. I had jumped ahead and stopped myself. Better to listen and to try to hear.”

I was sitting talking to Mahendra in the glassed-in intake room surrounded by thirty-three patients in various states of decompensation, mania, drug-induced delusions, suicidal depressions, personality disorders littered with ruined relationships, Wernicke’s encephalopathy from alcoholism, and a woman who had jumped off the Brooklyn
Bridge and lived to tell the tale (with some broken bones). And that was just the north side of CPEP. They all had complex stories. Deep histories, archival material we would never recover.

Mahendra was engrossed in the story of Jeffrey. He had known him as a street person, one who needed to be deloused when he came into the emergency room. Jeffrey’s delusions made him King of the Jains. He swept with a small fine broom in front of his steps to avoid trampling invisible insects, and Jeffrey covered his mouth so he wouldn’t inhale organisms thoughtlessly, ending their tiny lives. Whenever he entered the CPEP, he bellowed furiously when the guards took the broom away. As compensation, they offered him a surgical mask for his face, but Jeffrey threw it on the floor in disgust. Mahendra had the imagination and experience to know that behind every single patient we saw was a much larger story of a human being, of humanity. It was the thin line his father had told him about. He asked me to continue. “Eric, so the family suffered because no professional told them that no one can predict where these early symptoms might lead? You just cannot know. There are no predictive tools or models.” I wondered how many more Jeffreys were in the room. He had all of the advantages of a supportive family, more-than-adequate financial resources, and access to the best specialists. His family had sacrificed time and effort to keep him functional and flow with his emotional roller coaster, providing the guide rails to keep him on track, hoping that time was on their side, that he would indeed “grow out of it.”

“Mahendra, the conversations with his family that I’m telling you about were almost fourteen years ago, and the guy you are seeing through the Plexiglas talking to himself was twenty-four years old. He had finished two years of graduate school. He looked like a rower on an Olympic team. In fact he was a compulsive marathoner on a special diet and fastidious about himself to a fault.

“What made it exceptionally difficult were the unpredictable aspects of Jeffrey’s emotional irritability, then moodiness, then exuberance, and then his impulsivity. There were scarcely two days in a row when he was what anyone might call stable. They felt drained totally. They were transfusing him from their own emotional reservoirs. If
he was down, they pumped him up. If he was up, they calmed him down, and everything in between. They were exhausted emotionally but committed—even as they pursued their careers and tried to keep their marriage intact and maintain friendships. Emotional vampirism. When they added up the psychiatric consultations and visits over the years to a couple of dozen specialists, they concluded what you just admitted: No one knew.

“A neighbor offered them the best advice. She was a high school guidance counselor married to a professor at the same university. She had witnessed their distress and been silent. One day they went home and found an envelope from her under their door with a two-page typed letter. The first paragraphs apologized for her forwardness and the letter itself.

“Mrs. Bernier lost a thirty-year-old son to a congenital heart disease, hypertrophy of the ventricle, some abnormal heart muscle that triggered a spasm of electrical short-circuitry. A sudden death lying at his pregnant wife’s side in bed on a winter night. ‘I never thought she would recover,’ said Mrs. Torkelson, recounting the moral of the letter, ‘but she did. That letter was the best thing we got from anyone.’ ”

“What did the letter say?” Mahendra asked.

I paused to channel myself back to the time on the inpatient unit, talking to the Torkelsons when they had flown in from the Midwest, sitting in front of some take-out menus stuck to a bulletin board years earlier.

“In the letter, Mrs. Bernier talked about the kids she had counseled over the years. She mentioned the emotional growth and development the kids were going through. There were two things in the letter that hit home. Something like
Your son has an inability to regulate his emotions, so you are providing him with an environment to regulate them. That is all you can do. And you have to wait and be patient. What will evolve will evolve, or he will outgrow most of the behaviors. You cannot ask more of yourselves. Most of the kids I have worked with over the years would be blessed to have parents who could provide them with the love and nurturing that you have provided. The psychiatrists have no idea, and no way of knowing what will turn out. Worse for
you, they cannot say this to you. They simply don’t know and their way of saying they don’t know is what you have heard. More consultations will be more confusing.

“Professor Torkelson continued, ‘At that point we stopped looking and searching and started to relax a little even though we knew we might be looking over a cliff. I mean, here we were at the edge of the cliff. We could lose our son and not be able to do anything about it. We finally accepted it from a woman we hardly knew.’ ”

“The hardest lesson for most parents, if they ever get to this point at all,” said Mahendra.

“I asked them how Jeffrey made it through college since they weren’t there anymore. He had gone away to an Ivy League university that was very demanding academically. ‘In a way,’ Mrs. Torkelson continued, ‘we had nothing more to offer. I was exhausted and perhaps had kept him too confined, too much under surveillance. We were relieved he went away to university. You know the punch line, Doctor. We feel stupid, like idiots. He couldn’t cope, it was too much to hope for. His doctors are telling us now he is schizophrenic. We have spent close to twenty years with Jeffrey monitoring all of his activities, thoughts, and relationships. Trying everything to keep him okay. Adjusting things constantly the best we could, spending a small fortune to get the best advice in the country about what he might have and what could be done. We knew schizophrenia was on the list of possibilities. But it’s like on a bottle of aspirin that lists all the possible side effects. You don’t think you’re going to get them all or probably any of them, really.’ ”

Mahendra interrupted me. “You know, Eric, all parents feel so guilty when they find out their child has schizophrenia. How much of it is genetic? How much environmental? Why this kid and not another? It’s hard to know. We have those ‘weak link’ associations. Some have to do with the age of the father at conception. Some hint at the use of marijuana. In 1943, the Nazis controlled half of Holland and cut the calories per person from eighteen hundred to six hundred in retribution for partisan activity. The Allied half of the country had ample food rations. The rate of schizophrenia in the starved half of the
country went up by orders of magnitude. Pregnant women in Jerusalem during the 1967 War had a higher rate of schizophrenic kids. History gives us these ‘natural experiments.’ But how does that explain Jeffrey?” Mahendra always wore a white doctor’s jacket and carried a stethoscope, unlike the rest of his psychiatric peers. He insisted he was a doctor first and a psychiatrist second. As he would often remind me, “
What do my patients with severe and persistent mental illness die from?
Diabetes, heart disease, strokes, kidney disease, all the common things that go untreated, under-recognized, and basically neglected by both my psychiatric colleagues and internists.” Like me, I realized.

I continued, “The problem that the family had to deal with pretty soon was that Jeffrey refused to believe he had an illness. In fact, while he appeared to be fine on his medications to the rest of the world, he felt the subtle side effects were daily reminders of an illness he did not have. He gained twenty-five pounds, he was always hungry, and he had a subtle restlessness that increasingly made him uncomfortable. The conventional response of his doctors was that this was a ‘small price to pay’ for control of delusions, to finish his doctorate and have a life to share with other people. He took the medications for a year and then stopped them.”