LIVING ON THE FRINGE

© Rev. Julie-Ann Silberman-Bunn. All Rights Reserved.
The Unitarian Universalist Church of Greater Bridgeport
January 28, 2007

The face of mental illness has changed dramatically in our society over the last fifty years and even more so in the last twenty. With advances in psychopharmacology there are many people who are able to maintain perfectly normal lives in spite of having a mental illness. Once mental illness was a reason to be shut away for life, today most mental illnesses are treatable with daily medication, and the average person maintains what appears to be a normal life. However the key phrase is appears to, because the individual may not feel normal on the inside, and they may have a level of concerns that would not even occur to others. In part this is because a stigma about mental illness remains, alive and well in our society is a deep seated prejudice against those with mental illness.

Insurance companies are less likely to insure someone on a medication for depression or anxiety or any one of a wide array of other illnesses that fall under the subheading of mental illness, even though many of these are today easily manageable with proper drug therapies. People still avoid seeing a therapist or a counselor because that would mean they were crazy or unable to deal with their problems. Mention a psychologist or god forbid a psychiatrist and you have really stepped into an abyss that is too frightening for many people to even consider. The same was once true of those diagnosed with cancer but that stigma has changed.

These same people, these professionals, these drugs allow many people to function in the world without anyone having to be any the wiser about mental illness. In the world of diversity and oppression that would be called passing, many people can pass today as being “normal”, a person who goes through life day in and day out looking just like everyone else. Yet most of them worry about whether someone will think they are crazy, whether they will do or say something they shouldn’t because they didn’t get their medicine at the right time, or because other factors in life just built up so much that even with medicine it was all too much.

Just last week in the news there was a young man from Shelton who disappeared, we heard how great he was, what an awesome student, and then we heard he committed suicide. He was one of the ones I see as living on the fringe, an apparently normal guy who reached a breaking point. My friend Chris reached that point last year when he checked himself out of a hospital and walked in front of a train and allowed himself to be killed, choosing a method of suicide which was unlikely to fail.

These people have a disease, that disease is called depression; depression is a painful and terrifying illness which leaves its victims confused and at times helpless against its ability to invade their minds. Depression is an illness, much like cancer, there is no one single form or cause for depression, just like there is no one type of cancer, no one cause or one treatment for cancer there is no one treatment that will cure all depression. In most cases however depression can be managed and the individual can live a pretty normal life.

I think it is probably safe to say that at sometime in each of our lives we have casually called someone crazy or said oh that’s a crazy idea. It is that casual use of language which makes it so hard to live in this world with some type of mental illness. This morning I am addressing only those types of mental illness that anyone of us might have, depression, bi-polar disorders and the like not the kinds of mental illness which still require individuals to be heavily medicated and institutionalized. Although I am sure that there are some among us who have faced those situations as well, and the return to quote unquote ‘normal life’ afterwards remains one of the major challenges of living with mental illness in our society.

In our society mental illness is feared and marginalized and has been for centuries. Much earlier in this nation’s history there was a woman who spent her life battling for the rights of the mentally ill. This woman’s achievements allowed many with disabling mental illnesses to regain some semblance of life outside of prisons and it challenged the understanding that mental illness and those with mental illnesses were to be treated as criminals. This woman was a Unitarian named Dorothea Dix.

Dorothea Dix spent much of her adult life advocating for those with mental illnesses to be released from horrendous prisons and she helped to establish numerous psychiatric facilities where people could receive treatment rather than punishment for their conditions. One of these hospitals and the one where Ms. Dix lived out her later years was in Trenton New Jersey. For the first part of my life I lived very near that hospital and it was at that hospital my parents met, they always said it was at a staff meeting, my father was a psychologist and my mother a psychiatric social worker. I was raised hearing stories and visiting the facilities of Trenton Psychiatric.

The kinds of stories I heard were the stories of patients who lived most of their lives in the psychiatric facility. These were people diagnosed with some type of mental illness in an age before pharmacology had made such amazing strides. The way these people were described to me, the way these mental hospitals operated then were quite different than the images I have gleaned over the years from movies and books like one flew over the cookoos nest. In fact, the way I came to understand mental hospitals in the early parts of this century were as self enclosed communities. Places where the patients and staff coexisted in a symbiotic relationship, often with patients who were doing well having some type of job. Patients would learn skills, or use those they had had on the outside. Patients cooked and gardened, helping to maintain and beautify the environment that would in most cases be their home for life. In most cases this was a good arrangement. Many of these individuals found support and did not have to deal with the stressors that might be found in a less structured and understanding environment.

In the last fifty years there have been three major changes in the mental health environment. The first came about with medications. Medications have allowed the vast majority of individuals with mental health concerns to live relatively normal lives out side of clinical or hospital settings. Leaving only those whose mental health concerns put themselves and others at risk, and those for whom drugs are yet to be found that work without devastating side effects.

The second change was intended to benefit patients but in many cases took away the only things that gave meaning to their lives. The government determined that psychiatric patients could not work; a patient working was taking advantage of the patient while eliminating necessary jobs. This left patients with little or nothing to do to occupy the bulk of their days.

The third and probably the most significant change was the move to de-institutionalize the mental health system in this country and mainstream the bulk of people with mental illness. In the mid-1970’s the vast majority of psychiatric hospitals around the country were closed, or if not closed there were drastic reductions in staff and facilities. Many people who had lived for years in a sheltered and protective environment were left to care for themselves. These individuals often did not have the ability to follow the regime of medications that in the hospital environment had given a vastly improved function and quality to their days. And today in my eyes and the eyes of many others we have come full circle and need an advocate like Dorothea Dix to come forward and rescue the masses of mentally ill from our overcrowded prison system.

Among these people are people like myself who maintain the exterior appearance of normalcy but on the inside there is an overwhelming feeling, a weight on my chest that comes and goes and I have no control over it. I am one of those who lives on the fringe. I have suffered from severe depression for most of my life. I have found tools, like anti-depressants, therapy, prayer, art and friendships which hold me up in the times when things are going well, and even when they start to get rocky – but when the depression takes over there is very little that helps.

And yet the world does not stop spinning – in fact it usually feels like I am trying to keep up with a world that is spinning so fast I can’t stay on it. I think of the world during a bad depressive episode much like those spinning platforms in amusement parks where the kids spin and spin and then jump on once they have gotten it going really fast. I usually feel like I can’t run fast enough or I am too scared to jump, or I simply know the spinning will make me sick. It is almost impossible to describe how overwhelming and dark depression makes me feel. I know that anti-depressants are not the answer for everybody, and I know that even with anti-depressants life is not perfect. I also know that I am for the most part one of the invisible people with mental illness.

If I did not tell you that I struggled with depression you probably would not know it to look at me. You would not know that my father became so depressed when I was in the sixth grade that he had to be hospitalized for six months during which he was unable to dress or eat on his own, where he cried incessantly for days at a time. I am a professional, like my father and yet we both wrestled the beast of depression. I am more fortunate than my father, because I live in the age of prozac, zoloft, and now cymbalta among many other drugs that can provide the necessary chemicals to keep my life on an even keel, most of the time.

While we are more likely to read in the newspapers about those who are more severely disturbed than depressed it does not make depression, which can lead to suicidal tendencies, any less serious of a mental illness. We have learned much about mental illness over the years, as we have about so many diseases, which affect the human body. Cancer was once a death sentence, now there is great hope and even cures for some types of cancer, the same is true of depression and of other illnesses, some day they may all be eradicated.

Meanwhile medicines make life easier and usually better for most who suffer from depression. Medicines do not however remove the depression completely. The incidence of depression must still be lived through. There is still a stigma associated with taking these drugs, still a stigma about depression. Many feel that their creative impulses are severely diminished, and if that is their life, their joy, they must make a challenging set of choices which often further exile them from society. Some make choices which allow them to live in society, but without that which allows them to engage fully in the life that they could have. For still others medications are an answer to one set of problems while they raise others. Some individuals must choose between one set of needs and another. A good example of this is called serotonin syndrome for those who suffer migraines and have found relieve with a class of drugs that includes imitrex the combination of this medicine with an anti-depressant can in cases be fatal. Agony or depression – hmmm which would you choose? The choices are not always easy.

Those of us who fight daily to keep the demons of depression and other types of mental illness at bay still struggle with who it is ok to tell. I am talking about it now, because I know it is important for people who hold decent jobs, and are living on the fringe to speak up or the stigma will never be diminished, and some who could be helped will not seek help and the consequences can be dire. I am one of the lucky ones I can speak out others are forced to closet a critical part of their identity in order to survive, to keep jobs. And the scary part is if more of us could speak up we might save lives. People might even understand that there are times when we feel like we have been hit over the head or followed by the proverbial black cloud and can keep going with little or no problem. There are other times however when seemingly good things are happen and you are feel as if you have been swallowed by the monster which is depression.

I have faced many crises and much loss in my life. I began struggling with serious depression at the age of 18, when one of my closest childhood friends was murdered. I had a horrible battle with depression in my late 20’s when I was about to graduate from theological school. A few years ago I was able to offer pastoral support to a seminary student who experienced a similar incidence of depression. The death of my father triggered another episode, but it is not only major events that trigger depression, sometimes it is just life, ordinary unremarkable events that somehow cause life to spiral out of control, but I have learned not to let most people see it.

People often tell me, and I am sure others that “it will get easier, it will get better, just wait you’ll see there is a silver lining.” I am sure that for some people this is true. I am also sure that for some people it is these kinds of events that make them stronger, and then, when they break a fingernail, or spill a glass of water, it feels as if the world is collapsing around them.

I can not tell you why day after day people can face horrible things in hospitals, on highways, in their general lives and then become overwhelmed by the minutia. What I can tell you is that it happens, and too many people think you can just get over it. And you can’t, but you still go to work, and you come home and curl up in bed or on the sofa, or under a table and you try to stop the tears and forget the pain. And the next day you try to look as normal as possible, and you try not to cry in public – and you know that you have an illness and you hope that others don’t notice but you feel as if you are on the outside, on the fringe, looking in at life. It is hard, it is frightening, and it is isolating to be on the fringe. You never know what someone is feeling, what is happening inside of them until you take time to see the world through their eyes. For those of you who live with mental illness, whether it is depression, or one of a vast array of others, give yourself credit for each day you get up and face life. If you are fortunate enough never to have faced mental illness or been close to anyone who has try to be sensitive, try to be understanding, and think of mental illness as an illness a disease an often treatable medical condition, it is the first step to reducing the stigma.

Amen