Reconnecting

Joan Kraemer spent 10 years in and out of an upscale mental hospital south of San Francisco, battling chronic depression. "They had horses and a swimming pool, which covered the fact that I was in there having shock treatments," she says. In the 20-some years since, she has reared two children on her own and built a career as a counselor. But her road to wellness has been a slippery slope.While mental illness, like diabetes or a heart condition, never is "cured," many patients are able to rebound from severe crisis, manage their symptoms and pull together successful lives. Most professionals agree that the best recipe for recovery is a combination of medication, therapy, healthy living and social supports.But medications can be both bane and salvation for people with mental illness. Advances in pharmacology have produced drugs that are touted as more effective than the older drugs with fewer side effects. The trouble is, the medications game is a crap shoot. Doctors never know how someone will respond to a given medication until they try it.Ask Joan Kraemer. She's been taking a combination of two of the newer antidepressants which work reasonably well for her. Between the drugs, a healthy lifestyle and rewarding job, she had managed to stay out of the hospital for the last four years. But recently she found herself caught in the old cycle of not sleeping and not eating. She began hearing voices in her head compelling her to hurt herself. So she checked in to Ross Hospital, stayed for three days, then went home with a new anti-psychotic medication -- Risperdal -- hailed by many as a side-effect-free miracle drug. The next day, she had a violent reaction to the drug. Headed back to Ross in a friend's car, she was shaking so uncontrollably the car was rattling. It took her another week in the hospital to recover."Medications are a very individual thing," says Kraemer, who works with people with mental illnesses at a drop-in center in San Rafael. "Some drugs that are miracles for some people are nightmares for others." Recalling her reaction to Risperdal, she says, "I would rather be psychotic than go through that all the time." That's the decision made by many clients of the mental health system. When prescribed a medication that they find intolerable, they simply don't take it, often winding up back in the hospital. Or in jail. Or dead.It can take months of trial and error for a doctor and client to come up with the right mix of drugs. For clients on Medi-Cal, the process may take years -- and for many, the new drugs remain forever unattainable. The high cost of research and development these days makes new medications much more expensive than the older drugs, and Medi-Cal won't cover them. Exceptions are made only when a physician documents that the patient has tried several other medications that failed to work."When you first become ill and they assign you a medication, they pick the cheapest ones," says Joan Olsson, a member of Alliance for the Mentally Ill (AMI). "And they all have awful side effects. People are like zombies. They'll have involuntary tremors, they'll walk around spaced out, there's no sex drive. So after you've gone through three or four years of this, you might get the drugs that work and then you have a chance for recovery. But you've lost all this time." You've also gone through years of hell and may suffer side effects for the rest of your life.Not that the new medications are a walk in the park. According to the package insert provided by the manufacturer, 17 percent of people who take Risperdal have the kind of reaction Kraemer did. Known as "extraparametal symptoms," they include muscle spasms and other involuntary movements, pacing and Parkinson's-like motions. Risperdal seems desirable only in contrast to older medications which produce even more bizarre symptoms among a higher percentage of patients. Some clients and a minority of professionals, believe that drugs actually obstruct the recovery process. Sally Zinman, director of the California Network of Mental Health Clients, is a vocal critic of drug treatment, although her view, she says, is not representative of the organization she directs. She arrived at her opinion as an observer as well as a survivor of the mental health system.Zinman was hospitalized between 1971 and 1973 for paranoid schizophrenia. "I thought I was famous people," she laughs. "I literally didn't associate with my name or my past." Zinman says she was beaten by hospital staff but never given drugs. "I was abused and some horrible things happened to me, but my mind was left alone," she says. And, in retrospect, she considers herself lucky."I've seen people drugged and I've seen them twenty years after having been drugged and they've become mentally ill from the drugs. They've begun whole new patterns of behavior that didn't exist previously. They've been diminished as people. They shake and they've got tardive dyskinesia, a neuromuscular problem that is permanent."Psychiatrist Peter Breggin, co-author of "Talking Back to Prozac", has made the same observations. National director of the Center for the Study of Psychiatry and Psychology in Bethesda, Maryland, Breggin has been campaigning for reform in psychiatric practices since the '70s. He also serves as an expert witness for patients claiming disability from psychiatric drugs. "I was just involved as a medical expert in a case that won in court for $1.3 million," says Breggin when contacted by phone in Bethesda. "This woman was permanently twisted out of shape after having been on Prolixin, an older anti-psychotic."While this case was extreme, Breggin says that permanent tics resulting from antipsychotic drugs are not unusual. "These disorders develop at the rate of five percent at year," he says. "So if you're on the drug for three years, you may have a 15 percent chance of developing a permanent [affliction]." Breggin also agrees with Zinman that some people develop new psychoses after withdrawing from psychiatric drugs -- although he concedes that his opinion is disputed by the psychiatric establishment. "Risperdal hasn't been around long enough to have this kind of data on it," he says, "but you can have dementia or psychosis from [other antipsychotic medications]."Asked how she managed her recovery without drugs, Zinman laughs. "I think the question should be ... how [do] people manage their recovery 'with' drugs? Maybe if people were left alone, most of them would recover."Zinman came out of the hospital as removed from reality as when she went in. But she had learned to hide her symptoms. "I knew to put the name 'Sally Zinman' on checks because I could end up in the hospital again. And I could function and run a business and run my life." She moved to the country and settled on a farm. "For me, [my recovery came from] being outside and working on the land and learning how to build irrigation pipes and chicken coops." In time, she grew to understand that she was Sally Zinman, a competent woman with a successful business.Developing a positive self-image seems to have been the key to recovery for all the mental health clients interviewed here -- whether they take medications or not. Marilyn (not her real name) probably would not have survived without medication, but it was her own determination that seems to have made her well.Now 38, Marilyn has been in and out of hospitals for three or four years since the age of 28. Beautiful, slim and athletic-looking, she takes an occasional swig of bottled water as she tells her story. "The hallucinations started when I was in my mid-twenties," she says. "It was like having a nightmare when you're wide awake. You're seeing things and maybe misinterpreting things. And there was definitely paranoia. It was very frightening."Unable to hold a job, she lived with her parents for a while, but hated being there. So she would take off in her car, or just wander the Marin county hills, sometimes sleeping under a tree, sometimes walking all night, sometimes stuck in the rain.She stopped eating, and probably weighed no more than 90 pounds when her parents had her hospitalized for the first time. She was given several different medications over the years. "But some of the medications are so horrendous," she says. "I didn't even want people to talk to me because I felt like an idiot. I felt like I was slurring my words. It's horrible when you don't get quite the right medication or quite the right dosage." Sometimes she would stop taking her meds, and several times she made suicide attempts. "I was either not taking it at all or taking all of it."Maybe it was finding the right medication, maybe it was getting a new therapist that she liked, but she eventually reached a turning point. "I just made up my mind that I was not going to live like this anymore. I decided to get my life together and get out of the whole thing. I decided to do something constructive." She started taking classes. She learned how to swim. She began exercising regularly, swimming and playing tennis. She made sure to eat a healthy diet. She started working. She got an apartment of her own and made a home for herself.She has been gradually weaning herself from medication, and now takes very little. "Maybe it's like a bridge," she says. "It quiets the mind down, which is a good thing to do when you're that out there," she says. "But there's so many different things you have to do. You've got to take care of your body. And for the last two years, I've been working. I stopped getting government [disability] checks. That money is for somebody that depends on it. I know I can get work."The confidence in her voice now makes it hard to imagine what she was like six or seven years ago when she was overwhelmed by the prospect of even looking for work, let alone holding a job. But it appears she made the transition in a series of small steps, each accomplishment building her self-esteem and making it possible for her to achieve the next one.Unfortunately, the social stigma of mental illness can shatter one's self-esteem. "Polls have shown that people would rather have cancer than mental illness," says Michael Payne, director of the Peer-Based Mental Outreach program in Marin. His job is to help stabilize people struggling with mental illness by befriending them, bringing them into social support groups and bolstering their self-esteem -- all the while making sure they've got staples like medications and groceries. His hope is to give others the benefit of his own experience recovering from manic depression, or bipolar disorder.For years, Payne's wife and two sons watched helplessly as he rode a terrifying roller coaster of extreme highs and lows, turbulence and self-destructive behavior. He reached a crisis point one night while he was driving. "I thought there was someone in my van with me, so I started driving into telephone poles, trying to get rid of this person," says Payne. "I knew that wasn't normal and I went to my doctor [to find out what was wrong]. They locked me up."That was 13 years ago. Taking medications for the first time, and seeing a therapist, he began repairing his life when he joined a bipolar support group. "You have to have support from people like yourself who say, it's OK, we understand, you're welcome to the brotherhood and sisterhood," he says. "You're welcome, possibly for the first time in your life, by people who don't judge you. It can be literally life-saving. This is why I do what I do."A woman we'll call Florence eventually found her social supports by doing volunteer work. She had been hospitalized perhaps 25 times throughout her '20s, mostly for depression. "My brother would get concerned about me and just call the police and have them pick me up and take me to the hospital, which isn't a very pleasant experience. I hadn't done anything wrong, you know." Now 59, she's been on antipsychotics for 37 years.She started doing volunteer work when she was in her early '40s. "I've gotten a lot of acclaim for it," she says. "I worked in the office at Community Mental Health and the Mental Health Association. I liked the staff and I liked the work. And then I got hired by Community Mental Health to co-found the group that started the Enterprise Drop-In Center [where Joan Kraemer works]. That was the most rewarding thing I've ever done, I think. And now I'm on the Mental Health board, and the Mental Health Association board of directors and I'm on the Dual Diagnosis Task Force. I've been using my experience as a client in and out of the system to give advice."Valued by the people around her, Florence learned to value herself. Volunteering her time is a luxury she probably couldn't have afforded without financial support. Social Security disability payments have kept her afloat during rough times, and government-subsidized housing has kept a roof over her head.Housing subsidies are much harder to come by these days, though, and there are just so many slots available in treatment facilities. Buckelew Programs had to close one of its eight board-and-care homes after the recent round of county budget cuts. The county board of supervisors eliminated its share of the funding for that house, which accounted for 75 percent of the cost to run it.Cynthia (a pseudonym) knows the dire consequences of not being able to find housing. Last year, she tried to get her 23-year-old son into Four Winds West, a small home that helps young adults with mental problems make the transition back into jobs and independent living. There was one bed available for a Medi-Cal patient and it went to another boy. Cynthia's son, suffering from bipolar disorder, took off to live in the park and she soon lost touch with him."He went back to his old friends and his old routine and stopped taking his medications. They [Four Winds] called me in October and said, we've got a bed open. But he had run away and I had to say, I'm sorry, it's too late."Meanwhile, Cynthia has been fighting her own battle with bipolar disorder. It was only six years ago, at age 44, that she discovered she had the illness. After years of running a highly successful business and pulling down a six-figure income, she went into a manic-depressive spin and lost everything."One of the things about [bipolar disorder] is you can hide it real well, for years and years and years," she says. She and her family lived in a small town where she was very well known. Her crash made news in the local newspapers. "When this all broke, I was not believed. Because no one could believe I could be that successful and have anything wrong with me. Especially mental illness. It hurt me so badly, I went into a catatonic state. I was in bed for a year. I was not even able to make Jell-O, as one of my friends put it."Her marriage broke up and she moved to Marin, where she's now trying to get by on disability payments of $1192 a month. "I am not doing well," she says with a wry laugh. A statuesque blonde, dressed in the expensive clothes salvaged from her old life, she looks like she belongs in affluent Marin. But after her rent and medications are paid for, she has little left for food. She's on a combination of pricey new drugs that work well for her, but Medi-Cal won't cover them. She has not been able to bring herself to go to any of the agencies that supply free food.On a positive note, Cynthia is gradually working her way back to mental health. She's gone back to school to train herself to become a therapist. She's volunteering as a peer counselor in Buckelew's companion program. And she recently landed a job as an assistant to Michael Payne in his peer outreach work.Peer counseling has been a component of Joan Kraemer's recovery, too. Two years ago, she joined a peer counseling class for mental health clients taught by Meg Brizzolara at College of Marin. The next year she returned as a teacher. She takes deep satisfaction in seeing graduates of the program placed in counseling internships in agencies throughout the county. "Some people go from being totally narcissistic to finding out about other people," says Kraemer. "It switches the focus. It's a miracle."Kraemer's experience is that no one thing is a magic bullet for mental health. "Everything" she does plays an essential role -- watching her diet, getting plenty of rest and exercise, working in her garden, taking the right medication and enjoying her job. "What I teach other people now is ways of being in charge of your mental illness and being productive while you have it instead of buying into the whole disabled 'I'm not able to do anything routine," she says. "And I think that's a lot more possible now because of new medication."However relying too much on medication can be a trap, she says. "That's one reason why a lot of mentally ill people stay stuck. You get programmed to believe that if you just medicate yourself, you just take the right drugs, you're going to be better. And it doesn't work like that."

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