A group of about twenty of us came together and established trust through some basic exercises. Then each of us was asked to construct a narrative of the thing that was most painful in his or her life. We shared our narratives in basic form and were asked to choose people from the group to represent the other figures in our narratives. Reinhard Lier then choreographed a kind of elaborate dance using these people as physical markers, placing one in front of the other, moving the subject around, and retelling the story toward a better resolution. He called these formations “family constellations.” I chose to work on my mother’s death as the point of origin of my depression. Someone played my mother, someone else my father, someone else my brother. Lier said he wanted my grandparents there as well, the one I had known and the three I had not known. As he shifted us around, I was asked to direct speech to these various figures. “What do you have to say to your mother’s father, who died when your mother was still quite young?” he asked. Of all the work I did on depression, this was perhaps the treatment most contingent on a charismatic leader. Lier was able to arouse a great deal of force in each of us, and by the time I had done twenty minutes of his dance and of saying certain things, I did feel as though I were speaking to my own mother again, and I told her some things I thought or felt. Then the spell broke and I was in a seminar room in a conference center in New Jersey—but I left that day with a feeling of calm, as though something had been resolved. Maybe it was just the very fact of addressing words to these forces to which I never speak, these vanished grandparents and my lost mother, but I was moved by the process and thought it had something sacrosanct in it. It wouldn’t cure depression, but it could bring some measure of peace.
The most compelling of our group was a man of German extraction who had found out that his parents had worked in a concentration camp. Unable to process this horror, he had become severely depressed. During his speeches to all the different members of his family, who were being physically positioned closer to him and farther away by Reinhard Lier, the man wept and wept and wept. “This is your mother,” Lier said at one point. “She did terrible things. She also loved and protected you when you were a child. Tell her that she betrayed you, and then tell her that you will always love her. Do not try to forgive her.” It sounds contrived, but it was in fact sweetly powerful.
It is hard to talk about depression during depression even with friends, and so the idea of depression support groups seems counterintuitive. Nonetheless, these groups have proliferated as incidents of depression have been more widely recognized, and as funding for therapy has dwindled. I did not go to support groups during my own depression—out of snobbery, apathy, ignorance, and a sense of privacy—but I began to go as I worked on this book. There are hundreds of organizations—mostly hospitals—running support groups across the United States and around the world. Depression and Related Affective Disorders Association (DRADA), at Johns Hopkins, runs sixty-two different support groups, has set up a one-on-one buddy system, and publishes a particularly good newsletter called Smooth Sailing. Mood Disorders Support Groups (MDSG), based in New York, is the largest support organization in the United States, running fourteen support groups every week and serving about seven thousand attendees per year; MDSG also sponsors ten lectures a year, each of which is attended by about one hundred fifty people. They publish a quarterly newsletter, which goes out to about six thousand people. MDSG meetings take place in several locations; I went mostly to the groups at Beth Israel Hospital in New York at seven-thirty every Friday night, when most depressed people are not having dates. To enter, you pay $4 in cash and are given a sticky label with your first name only, which you wear during meetings with about a dozen others and a facilitator. First, everyone introduces himself and explains what he wants from the meeting. Then a more general discussion opens up. People tell their stories and offer advice to one another, sometimes playing games of one-downsmanship. The sessions run two hours. They are terrifyingly, addictively heartbreaking, full of treatment-resistant and abandoned people who’ve had severe episodic histories. These groups try to fill in for the increasing impersonality of medical systems; a lot of the people at them have destroyed relationships in their illness and lost families and friends.
On a typical visit, I went into a room glaring with fluorescent light and found ten people waiting to tell their stories. Depressives are not great dressers, and they often find that bathing uses up too much energy. A lot of this crowd looked as ratty as they felt. I went seven Fridays. The last time I was there, John talked first, because he liked talking and was doing pretty well and had come almost every week for ten years and knew the ropes. John had kept his job, never missed a day of work. Didn’t want to take medication but was experimenting with herbs and vitamins. Thought he was going to make it. Dana was too depressed to talk tonight. She pulled her knees up under her chin and promised she’d try to talk later. Anne hadn’t been to MDSG in a while. She’d had a bad time: took Effexor for depression and it helped a lot. Then when her dose was raised, she’d gone paranoid, “flipped out.” Believed the Mafia was out to get her and barricaded herself in her apartment. Eventually got hospitalized and had “every medication, every single one” and then when none of them helped, she got ECT. Couldn’t remember much from that time; the ECT had wiped out a lot of the memories. She used to be an executive, white-collar. Now she fed people’s cats for a living. Today she’d lost two clients, and rejection was tough. And humiliation. So she’d decided to come by tonight. Her eyes filled with tears. “You’re all so nice, listening to one another,” she said. “Out there, no one listens.” We tried to help. “I had so many friends. They’re all gone now. But I’m making it. Walking around to my different cats is good, it keeps up some movement, the walking helps.”
Jaime had been forced to resign from his job with “a government agency” because he’d missed too many days. He’d been on disability leave for three years. The people he still knew, most of them wouldn’t understand. He pretended still to have his job and didn’t answer the phone during the day. He seemed well tonight, better than I’d seen him. “If I couldn’t keep up appearances,” he said, “I’d kill myself. That’s all that keeps me going.” Howie was next. He had been sitting all evening and hugging a big down coat to his chest. Howie came often and talked seldom. He looked around the room. He was forty years old and had never had a full-time job. Two weeks ago, he’d announced that he was about to take one, have a change in income, be like a normal person. He was on some good medications that seemed to be helping. But what if they stopped working? Could he get back his $85 per-month disability Supplemental Security Income (SSI)? We’d all told him to go for it, to try the job, but tonight he told us he’d turned it down; it was just too frightening to him. Anne asked whether his moods were constant, whether outside events had any effect, whether he felt different when he took a vacation. Howie looked at her blankly. “I’ve never had a vacation,” he said. Everyone kept looking at him. He shuffled his feet on the floor. “I’m sorry. I mean, I guess I’ve never really had anything to take a vacation from.”
Polly said, “I hear people talking about cycling, about going in and out of moods, and I feel really jealous. For me, it’s never been like that. I’ve always been this way; I was a morbid, unhappy, anxious child. Is there any hope left for me?” She was on Nardil and had found that clonidine in microdoses saved her from the heavy sweating she experienced. She’d originally been on lithium, but it had caused her to gain about fifteen pounds a month, so she’d stopped. Someone thought she should try Depakote, which can be helpful with Nardil. The restricted eating with Nardil was a real pain. Jaime said that Paxil had made him sicker. Mags said she had had Paxil and it hadn’t worked for her. Mags seemed to be speaking through the fog. “I can’t decide,” she said. “I can’t decide anything.” Mags was so apathetic she didn’t get out of bed for weeks at a time. Her therapist had almost forced her to come to this group. “Before medication, I was this neurotic, miserab
le, suicidal person,” she said. “Now I just don’t care about anything.” She looked around the room as if we were the jury at the Pearly Gates. “Which is better? Which person should I be?” John shook his head. “This is the problem, how the cure’s worse than the disease,” he said. And then it was Cheryl’s turn. She looked around but you could tell that she wasn’t seeing any of us. Her husband had brought her here hoping it would help and was waiting outside. “I feel,” she said in a flat voice like a slowed-down old record-player, “as though I died a few weeks ago, but my body hasn’t found out yet.”
This sad gathering of shared pain was a singular release from isolation for many of the people there. I remembered from my own worst times those eager, questioning faces, or my father saying, “Are you doing any better?” and how disappointing I felt when I said, “No, not really.” Some friends had been fantastic, but with others I had felt obliged to be tactful. And jokey. “I’d love to come, but I’m actually having a nervous breakdown right now, so could we do it another time?” It is easy to keep secrets by being honest in an ironic tone of voice. That basic feeling at the support group—I have my mind today, do you have yours?—spoke volumes, and almost in spite of myself, I began to relax into it. There is so much that cannot be said during depression, that can be intuited only by others who know. “If I were on crutches, they wouldn’t ask me to dance,” said one woman about her family’s relentless efforts to get her to go out and have fun. There is so much pain in the world, and most of these people keep theirs secret, rolling through agonizing lives in invisible wheelchairs, dressed in invisible bodycasts. We held each other up with what we said. Sue, one night, in anguish, crying through her thick mascara, said, “I need to know if any of you have felt like this and made it. Someone tell me that, I came all this way to hear it, is it true, please tell me that it is.” Another night someone said, “My soul hurts so much; I just need to interface with other people.”
Practical purposes are also served at MDSG, especially for people who are not coddled by friends, family, and excellent health insurance. You don’t want your employer to know, or your prospective employer; what can you say without lying about it? Unfortunately, the participants with whom I came in contact mostly seemed to give each other excellent support and terrible advice. If you’ve sprained your ankle, other people with sprained ankles may be able to give you useful pointers, but if you’ve got mental illness, you should not rely on people with mental illness to tell you what to do. I drew on my reading knowledge, horrified at what bad counsel a lot of these people had had, but it was hard to achieve much authority. Christian was clearly bipolar, unmedicated, and getting manic; I am sure he will have had a suicidal phase before this book is published. Natasha should not have been thinking of going off Paxil so soon. Claudia had been through what sounded like badly administered and excessive ECT, and then had been overmedicated into a zombie; Jaime might, with ECT, have been able to keep his real job, but he knew nothing about how it really worked, and what Claudia had to say did not reassure him.
One time, someone was talking about trying to explain things to friends. A longtime MDSG man, Stephen, asked the group, “Do you have friends outside?” Only one other person and I said that we did. Stephen said, “I try to make new friends, but I don’t know how it works. I was such a recluse for so long. I took Prozac, and it worked for a year, and then it stopped. I think I did more that year, but I lost it.” He looked at me curiously. He was sad and sweet-natured and intelligent—clearly a lovely person, as someone said to him that evening—but he was gone. “How do you meet people, besides here?” And before I could answer, he added, “And once you’ve met them, what do you talk about?”
Like all diseases, depression is a great equalizer, but I met no one with depression who seemed a less likely figure for it than Frank Rusakoff, twenty-nine, soft-spoken and polite and good-natured and good-looking and the sort of person who seems altogether normal, except that he suffers from horrendous depression. “You want inside my head?” he once wrote. “Welcome. Not exactly what you expected? It’s not exactly what I expected either.” A year or so after graduating from college, Frank Rusakoff was at the movies when his first depression hit him. In the seven years that followed, he was hospitalized thirty times.
His first episode came on abruptly: “On the way home from a movie, I realized I was going to drive into a tree. I felt like there was a weight pushing my foot down, like someone was pulling my hands around. I knew I couldn’t drive home because there were too many trees that way and they were getting harder and harder to resist, so I headed for the hospital.” During the years that followed, Frank went through every medication in the book and got nowhere. “In the hospital, I actually tried to choke myself to death.” He finally went in for ECT. That helped, but it also made him briefly manic. “I hallucinated, attacked another patient, had to go into the quiet room for a while,” he recalls. For five years thereafter, Frank got booster ECT (one treatment, rather than a series) whenever the depression hit again, usually about once every six weeks. He was put on a combination of lithium, Wellbutrin, Ativan, doxepin, Cytomel, and Synthroid. “ECT works, but I hate it. It’s totally safe and I would recommend it, but they’re putting electricity into your head, and that’s scary. I hate the memory problems. It gives me a headache. I’m always afraid they’ll do something wrong, or I won’t come out of it. I keep journals so I can remember what happened; otherwise, I’d never know.”
Different people have different hierarchies of treatment in their heads, but surgery is the last resort for everyone. Lobotomies, first performed at the turn of the century, became popular in the 1930s and, especially, after World War II. Returning veterans with shell shock or neurosis were routinely given clumsy operations in which their frontal lobe (or other brain sections) was severed. In the heyday of lobotomies, about five thousand were performed annually in the United States, causing between 250 and 500 deaths a year. Psychosurgery lies under this shadow. “Sadly,” says Elliot Valenstein, who has written a history of psychosurgery, “people still connect these surgeries with mind control and they run away from them.” In California, where ECT was illegal for a while, psychosurgery is still illegal. “The figures on psychosurgery are significant,” Valenstein says. “About seventy percent of the target population—people who have failed everything else—have at least some response; about thirty percent of these show really marked improvement. This procedure is done only for those people with severe and lasting psychiatric illness that has been unresponsive to pharmaceuticals and ECT, who’ve failed everything thrown at them, who remain severely disabled or ill: the most refractory cases. It is something of a last resort. We do only the gentlest procedure, and sometimes we have to do it two or three times, but we prefer that to the European model, which is to do more major surgery right away. With cingulotomy, we have found no permanent change in memory, or in cognitive or intellectual function.”
When I first met Frank, he was just back from having a cingulotomy. In that procedure, the scalp is frozen locally and the surgeon drills a small hole in the front of the skull. He then puts an electrode directly onto the brain to destroy areas of tissue measuring about eight by eighteen millimeters. The procedure is performed under local anesthesia with sedation, using a stereotactic frame. This surgery is now done in only a few places, and the leading one is Massachusetts General Hospital, Boston, where Frank was seen by Reese Cosgrove, the leading psychosurgeon in the United States.
It is not easy to get into the cingulotomy protocol; you have to be reviewed by a screening committee and put through an endless barrage of tests and questions. The presurgery review takes at least twelve months. Mass General, the most active center, does only fifteen or twenty of them a year. As with antidepressants, the surgery usually has a delayed effect, often showing benefit after six or eight weeks, so it is probable that the benefit comes not from the elimination of certain cells but from what the elimination of those cells does to the functioning of
other cells. “We don’t understand the pathophysiology; we have no understanding of the mechanisms of why this works,” says Cosgrove.
“I have hopes for the cingulotomy,” Frank told me when we met. He described the procedure with an air of mild detachment. “I heard the drill going into my skull, like when you’re at the dentist’s office. They drilled two holes so that they could burn the lesions into my brain. The anesthesiologist had said if I wanted more medication I could have it, and I was lying there and listening to my skull opening up, so I said, ‘This is kind of creepy; can you put me a little further under?’ I hope it works; if it doesn’t I have a plan, I’ve had a plan, for how to end it all, because I just can’t keep going like this.”
A few months later he was feeling marginally better and trying to reconstruct his life. “My future seems particularly clouded right now. I want to be writing, but my confidence is so low. I don’t know what kind of writing I could do. I guess being depressed all the time was actually a relatively safe place to be. I didn’t have the real-world worries that everyone else has because I knew that I simply couldn’t function well enough to take care of myself. What do I do now? Trying to break the habits of years of depression is what I’m doing for the moment with my doctor.”
The Noonday Demon Page 23
