By Alexis Zeigler
“I have a heart, remember to tell them that.”
—Delancey, the evening she took her life, July 1993
What if there were a serious disease affecting millions of Americans, sometimes with deadly consequences? What if it had no clear cause or cure, but some treatments existed that had been scientifically and systematically shown to be the most effective? What if these treatments were so effectively ignored and disregarded by doctors that they had become all but completely unknown inside and outside of the medical establishment?
All of these things are true, and I am not talking about some half-baked “cure” for cancer. All of these things are true about serious mental illness. It impacts millions of Americans, though we are forced to hide it because it bears such strong social stigma. We have spent incomprehensible sums of money to build hospitals, research drugs, and develop all manner of invasive techniques with horrifying side-effects. And repeated studies in third world villages where people live in very meager circumstances show that they, with no “technology” at all, have a higher rate of recovery from serious mental illness. Yet you will never hear that most extraordinary fact from a psychiatrist. (Warner, Richard, Recovery from Schizophrenia: Psychiatry and Political Economy, New York, Harper and Row, 1985)
Modern intentional communities fall somewhere in between mainstream America and a traditional village. Intentional communities generally lack the intensive kinship systems that make up the basic social fabric of villages. But modern communities do reclaim some of the intensive social support of traditional villages. It is perhaps because of this increased support and a sense of safety that one sees mental illness more openly in community. And while I would not want to make disparaging comments about my fellow communitarians, I think it is also true that misfits are attracted to community. That is nothing to be ashamed of.
Activist groups are likewise full of crazy people. Most of history’s famous people, especially those who took upon themselves to be agents of change, were misfits who by today’s standards would have been called mentally ill. Sigmund Freud, the granddaddy mind-doctor of them all, had “disorders” and addictions that would have been labeled obsessive-compulsive in modern times. Abraham Lincoln and Winston Churchill both suffered bouts of deep depression. Isaac Newton, Beethoven, Vincent Van Gogh, and a long list of other famous and highly accomplished individuals suffered from what would now be called “bipolar disorder.” If each of them had been hospitalized at a young age, stigmatized with that most horrific of labels of being “mentally ill,” how many of them might have failed to continue with their life’s work? One can only wonder.
The difficulty in community is that we can take the lid off of the can, but we don’t have a clue what do do next. Mental illness can be terrifying and extremely fatiguing. I live in a small community that has been referred to as “the Asylum” because we did support work for mentally ill people for a number of years. I have spent many sleepless nights, and I have dug too many graves. Sometimes the demons play for keeps. The terrified family and friends often run to the psychiatrists. I try to explain to them that the doctors may help or harm in the short term, but the support that community can offer is far more important. After a year or two of brutal disappointment, they see what I mean.
In the early days of the Asylum, one of my friends whom I will call James came to live with us. He experienced extreme states of unrelenting anxiety, racing thoughts, sleeplessness, sometimes also struggling with sudden visual and auditory hallucinations. Had we taken him to the hospital, he probably would have been labeled, medicated, and shamed. Instead, we kept people with him as much as we could. Someone often slept in the same room with him, as he found that comforting. Aside from any grandstanding about the superiority of community support over drugs for treating mental illness, it’s clear enough why the medical establishment can’t offer that kind of treatment. It is a lot of work. It can be extremely fatiguing, physically and emotionally. With James we traded off between friends. It took about seven months, but he got better. For years now he has run a state-wide and now nationally recognized social service agency that offers support for self-help organizations comprised of mentally ill people.
If I take all the crazy people I have known and draw a circle around the ones who are alive, some amazingly productive and happy to boot, they are the ones who maintained their social networks. In spite of periods of extreme pain or stress, broken hearts, broken promises, and damaged goods, they put their energy into maintaining their relationships. If I draw a circle around the crazy people I have known who are now dead, they failed to maintain their social networks. The lesson is clear enough.
One learns from the losses as well. When I lived at Twin Oaks, I befriended and fell very much in love with Delancey, a young woman who had come there from a troubled past. We were never sexually or romantically involved. That for me is the meaning of community, to fall deeply in love with people, many people, whether or not they are romantic partners. She told me things that were so shocking as to be incomprehensible. That was the first lesson—believe the unbelievable.
Without wanting to divide the world into petty dichotomies, I see people having different coping mechanisms for their pain. Some people dig into their memories and express their emotions with great vigor. Some people develop a strong discipline to keep a lid on their bad memories and are more stoic. At the Asylum, our shorthand for this dichotomy was “diggers and pavers.” One of the greatest problems with helping crazy people is that diggers and pavers often do not get along. Each feels deeply threatened by the other. The pavers have the greater social sanction of mainstream America, which is a paver-oriented culture to a rather extreme degree. (One hears a constant refrain from anthropologists about how much more expressive are people in non-western cultures.) Abuse survivors can be infinitely compassionate with other abuse survivors, or seemingly cruel, depending on the adaptive techniques each person is using and the chemistry between them.
I have found, quite consistently and much to my chagrin, that when I try to help someone in crisis, almost all of the work goes into dealing with and helping the people around the person in crisis who are triggered and agitated by the person in crisis. Crazy people test our boundaries and force the dirt and filth of bitterness in community right out into the light of day. I have a belief that many traditional cultures understood this painful and necessary process, and made use of it. Crazy people often held a revered place. (That assertion is based on ethnographic information, not romanticized visions. Richard Katz’s Boiling Energy is one amazing book on the subject.) We struggle to understand. Craziness can be an opening, a healing for all of the community, but it’s not easy.
Taking care of crazy people is often very hard work. In our hyper-individualistic world, we try to shove that burden onto the medical institutions, or onto anyone we can find. In the end, you get what you pay for. Crazy people test our compassion, and can re-enforce or destroy it.
Delancey was a digger to the extreme. She was deeply compassionate and poured herself into trying to help others. Her digger tendencies were too much for some. Some people were overwhelmed by her. A surprising number of people were jealous and resentful for all the attention she got, in spite of the fact that she was in extreme pain, in a most precarious situation. Her death was nothing short of a bomb in her community. We open the lid, and then we do not know what to do with what jumps out. We can try to put the lid back on, which is what America says is right. It’s not right for me.
I believe we are all crazy. As soon as you get over that, it starts to get a little easier. You can’t run from it, whether it is manifest in yourself or your loved ones. You can bury it or deal with it; there aren’t any other options. The impact of crazy people in community is different because the social fabric is different. We all feel it when someone is having a hard time.
Crazy people are not a rare species. In the mainstream, people hide it. In community, you see it up close. A lot of people suffer manic and psychotic episodes if they are subject to extreme stress. Beware the labels. The term “schizophrenic” is simply a trash bin into which the doctors sweep everything that they do not understand. The manner in which labels are assigned by psychiatry is cursory and often extremely damaging. Most people, when they are dealing with bad memories or other highly stressful circumstances, will display symptoms that could be labeled mental illness. Some crazy people want to be labeled because it makes them feel a little safer that they have a specific illness with a specific treatment. I have heard the refrain from the docs too many times, “treatable condition.” To them, “treatable condition” equals “profitable pills.” There is a real treatment, and it’s called community.
In the meantime, if you are young and have one episode of mental disruption caused by extreme stress, you may be told, based on a three-minute interview with a psychiatrist, that you have a serious lifelong mental illness and told you will need to take powerful, expensive psychoactive “medication” for the rest of your life. The carelessness with which such drugs are prescribed, sometimes in contradiction to the instructions provided by the manufacturer, is stunning to people not familiar with the system.
An activist friend of mine had a classic manic-psychotic break a few years ago. She is young, and fits well into the category of people who are most likely to get better with support. She was hospitalized, told she had a “treatable condition,” and medicated. She was taking the drug she was given for about a year before someone in the family bothered to look on the manufacturer’s website and discovered that the drug was intended only for very short-term use. (This particular drug has also since been the subject of thousands of lawsuits.) Based on one three-minute interview with a psychiatrist, she was given the drug and forgotten. Her health improved considerably once she stopped taking that drug, or “medication.” (In the end, poor people sell “drugs,” rich people sell “medication.” Such is the nature of things.)
The heart of the issue is that doctors can’t sell love. They can’t sell a social network. So they have constructed a fairy-tale land where madness is all biology and they sell pills. A friend of mine who worked on the “psych ward” for years made the comment that the psychiatrists have become nothing more than sales reps for the pharmaceutical industry. Be careful. They can kill your friends. The stigma of being labeled “mentally ill” hits people when they are most vulnerable. Some of them never get over it.
The psychiatric establishment created a myth that most crazy people do not get better. This is a lie with potentially deadly consequences. Most crazy people get better. Particularly for young people who are not habituated to psychoactive “medications,” chances are that they will get through a mental crisis and return to full function, though changed by the experience. Your job to help them will mean, in the beginning, dealing with their freaked-out friends and family. You do not need to figure out what is broken, try to fix it, or doubt your credentials. Your job is to try, as best you can, to provide a safe and supportive shell. You, or someone in the support group, will have to provide limits as well as support. Consistently, those closest to a crazy person think they need support and those further away will say they need limits. In the end, they need both. But the bottom line is that they need to stay integrated, woven into the human fabric of community. That is their best hope.
Beware psychoactive substances, legal and illegal. Many people under extreme stress “self medicate.” Such behavior introduces powerful and unpredictable variables. I would suggest avoiding drugs of all kinds if possible. There are a small group of people with biological disorders who can benefit from modern chemistry, but that group is very small. In the end each crazy person has to make their own choices.
Chemical addiction to legal or illegal drugs, whether psychoactive “medication” or cheap beer, is likely to do more harm than good. One definition of addiction is the use of chemicals to avoid pain. Crazy people, and indeed all of us, are much better off if we can find ways to manage and integrate pain, not perpetually run from it. Marijuana is not the harmless substance that some of its proponents would claim, at least not in this context. It is a powerful stimulant for people with manic tendencies. That generally does not help.
The people who came together to help Delancey called themselves “the tribe.” Helen was among the tribe, and we found a kindred cause in trying to help people in crisis. Helen and I were partners for a couple of years. In time she drifted thousands of miles away. Over time, her situation deteriorated. I tried to stay in touch with her. I went and visited. I got in touch with her friends and tried to get them to stay in touch. Helen’s adult identity was radical, strong, and powerfully contradictory to the paver culture in which we live. But it was at great contradiction to all the pressures of family and the society around her. In the end, her adult identity succumbed to the pressure, and nearly disappeared under an accommodationist facade. It wasn’t her, and it didn’t work. She isolated herself. She too took her life, a few years ago now.
For me, Helen’s death was a turning point. I am not looking for new crazy friends at this point. I have no regrets. I hope I have learned some things, and I do not fear loss. I have come to cherish the victories. We brought people to the Asylum who had attempted suicide, or made other dramatic gestures looking for help. Many of them now have families, and are actively involved in social change. Coming to terms with your own pain is often a long and arduous process with no specific ending. Most people get better, often through a long and difficult process of learning what does not work.
Neither the diggers nor the pavers have the final answer. The people who can make use of the energy and insight in the deepest recesses of their minds, hold onto their true identity and bind it to a community around them, are the people we call leaders. This often comes at the price of many mistakes, many hard lessons about what not to do. For me the choices are clear enough. I will live and I will die among my people. I will not turn my back on them when the demons come to call.
Excerpted from the Spring 2011 edition of Communities (#150), “Mental Health.”