Tuesday, September 7, 2010

Newspaper Submission

Several weeks ago I submitted an article to a newspaper. The newspaper is published by Vermont Psychiatric Survivors and distributed for free through-out the state. Usually it deals with hospital news - the political and the cash flow of medical support centers for the mentally ill. Occasionally it will have a fresh voice, for instance someone who wishes to explain why being without medication is better for you or someone who wishes to describe what it is like living with their illness. My gut told me the newspaper will accept anything well written. However, after an initial favorable and welcoming response from their editor I have heard nothing. The silence started after I actually submitted my article.

Frankly, I have never read an article like my article. It goes against the recovery creed of going back to school and finding employment. It says that recovery is a limited phenomena for most with the illness of schizophrenia. The only "tone" that I can compare it to is an interview published in the New York Times with a schizophrenic artist living in NYC. That man was sick and in pain and despite making art, very disabled and very poor. The New York Times was refreshingly honest. They were gritty. I might have gotten wet eyes when I read the article. I know my heart went out to the man's suffering and I know I was oh so very glad that he had the joy of making art in his life.

I put a little bit of myself into the article, but in terms of my joys in life I was silent. I used other people's lives as examples of recovery although I do consider myself fairly well recovered. I am as recovered as my illness will permit me.

Once, about 20 years ago, a few years after I got my illness I overheard an interesting conversation. It took place in a social clubhouse between a social worker (who I knew was a closet bi-polar man) and a schizophrenic man. The schizophrenic man was large, black, middle-aged but had a very childlike mind. He did not work and although he was on medication he was semi-delusional. I remember his name was Robert and he had an imaginary best friend named Robbie who was a little invisible man who sat on his shoulder and told him things before they would happen. For instance, before a telephone would ring Robbie would tell Robert that this would happen. Robbie was not black like Robert, he was described as being three colors; white, orange, and green.

The social worker was doing a class in recovery. He told us in the class that we could be anything we could dream of. Robert said that he wanted to be an astronaut. Eryc (that was how the social worker spelled his name) said to him emphatically, with much gusto, that if Robert really wanted to be an astronaut he could be an astronaut. Robert was very happy about Eryc's belief in him.

I thought Eryc was being absurd. A part of him must have known he was being a liar. But the bigger part of him was already brainwashed by the recovery movement as he, a bi-polar man wished to view it; that indeed anything was possible. In Eryc's own life he had gotten sick in school but managed with medication to persevere and get a diploma. He had plans to get a graduate degree and specialize in marriage counseling. The world was open to Eryc to a degree that it was not open to Robert, and this fact Eryc ignored.

So what was Eryc supposed to tell Robert? That being an astronaut is very difficult and only a few people really do succeed who wish to be an astronaut? That Robert should shoot first at trying to hold down a job as a dishwasher? Or try first to take a college class? I don't know if Robert had even graduated high school.

I don't care much for encouraging fantasy. That's my personality quirk. But I have noticed that most schizophrenic disabled people's favorite fantasy, if they are sick enough to be on disability, is to somehow get a full-time job and get off disability. The recovery movement encourages this fantasy. Who is there for the people when they try and fail? Who picks up the pieces? Not the people in the recovery movement. What is the cost to a person to have a favorite fantasy fail? Most people I know who loose a job try again with a new job. Except the people who have been made sicker by their job and have had a mini-breakdown or who have committed suicide. At the clubhouse they kept statistics on people who were hired, but they never kept statistics on people who quit or were let go from their jobs. A good statistic would be this; after gaining employment, what is the average time a person with schizophrenia keeps their job? Compare this average with the average of a bi-polar or depressed person. The differences in the numbers will be night and day.

This is the article I wrote;

One in five persons with a schizophrenic illness can lead a relatively normal life working a full-time job. Elyn R Saks, the author of “The Center Cannot Hold” cites this statistic in her memoir. She is an accomplished professor at the University of Southern California and holds degrees in both law and psychology. She is also schizophrenic. And in stating her statistic she admits that she is rare.

I have a schizoaffective illness so this statistic is of interest to me. Always I have known that having a schizophrenic illness is statistically more disabling than having a depressive or bipolar illness. While there are many books written by people who explore their depressive or bipolar illness, there are fewer books published in the mainstream press by persons who have a schizophrenic illness. The list of famous artists, poets, politicians and philosophers who rose to fame despite their mental illness is numerous when it comes to depressive or bipolar illness. The list of schizophrenic persons who achieve usually achieve before the onset of their illness, or else, have extensive training and schooling before they get sick. For example, in the movie “A Beautiful Mind” the economic theory that would eventually earn John Nash a Noble Prize was created before the onset of his illness.

It makes me mad when advocates for the mentally ill promise too much too soon and ignore realities of failure. I know from experience that I cannot go to college, get a degree, and eventually work a full time job. Yet the advocates for the mentally ill, particularly the ones who are able to have an illness and a full-time job, hold out to me again and again examples of themselves as beacons of hope. “Look at me, look at what I’ve accomplished, and you can do it too!” is the refrain of some consumers who have made amazing recoveries. This is egotistical and cruel. Disability is a fact of life for many people, especially those with a schizophrenic illness. We are not lazy. We are not unmotivated. We usually do not enjoy being unemployed. How well we are aware of the consequence of living off the minimal payment that a disability check gives.

I have only lived in Vermont for 5 years. Before I came to Vermont I was a member of a social clubhouse for the mentally ill in Connecticut. I had an interview with the clubhouse director and asked him why he was pushing so hard for the clubhouse members to return to work. He said to me that out of all the models of treatment for the mentally ill, historically the only one that had a good outcome was to get the mentally ill back to work. Naturally this is a good idea for those whose disability is not severe. Work is a good idea for people who take medication and see their symptoms minimize or disappear. But for me, despite taking medication, I know that traditional forms of school or work makes me sicker, not better. Stress causes my illness to worsen. How many advocates for the mentally ill care what makes quality of life for the weakest among them? So often the option for getting employment and getting off disability does not exist.

Repeating Elyn R. Saks statistic in a different way, four out of five schizophrenics are unable to be stable enough to hold a full-time job. This is the statistic that I belong to. Probably these are the people that have the greatest difficulty finding meaning and hope in their lives. They will not know the camaraderie and friendship that exists through socializing with fellow employees. Often they will feel isolated and will have to find original and different ways to be a part of mainstream society. I know that for myself, my time with others needs to be limited because I find socializing draining. The way I experience most people who do not have a serious illness is as a bright light, full of energy and emotion. I know I don’t choose isolation, my mind chooses it for me. I spend hours in isolation every day as a means of self preservation. It seems that the walls that shelter my ego are very thin. And my thoughts do not last like the thoughts of a person without an illness. My thoughts grow dark and upset if I exhaust myself or over-expose myself.

And yet, I must have hope and meaning and fun and lightness in my life. I must rise above the illness and not let the illness define me. I know people who are in my statistic, very disabled with a schizophrenic illness, who have carved for themselves an unconventional life, and who have found a great deal of peace.

For instance, one of the happiest men I know lets his life revolve around playing ping-pong. He has managed to make friendships with people who are serious about the game, and his skill has skyrocketed since he practices as frequently as he can. Currently he is looking forward to entering State tournaments.

I know another man who keeps busy playing bridge with retired seniors. Bridge is a very cerebral game, and he studies books on strategy to increase his skill. Many of his partners are seriously dedicated to the game, masters with over two thousand wins in their lifetimes, and he is amazed that he can play in their league. This man also takes lessons on playing the organ and attends Buddhist meetings.

A woman who is a good friend of mine loves her cats and loves her part-time job as a page in a library. She says that she gets satisfaction out of physically touching the books, reading their covers, and imagining the stories that they contain. Once a week she meets in a bodybuilding gym with a trainer and works out with weights. You should see the muscles on her arms!

These three people have all found activities that they can feel passionate about. I know schizophrenics who feel a great emptiness in their lives, and schizophrenics who feel like their life is full. The difference seems to be that those who are successful, and I’m not talking about those who achieve degrees or careers, find activities that nourish their body or their mind.

As awkward as it may seem to say, having a disability is an opportunity. There are more options available then going to school or going to work. Having a disability gives you the chance to ask yourself, “What do I love to do?” For some schizophrenics this means writing poems or painting. For other schizophrenics this means playing music, gardening, swimming, or doing volunteer work.

I would love to be the type of advocate who says, “get off the sofa where you are watching television and do something that puts some meaning into your life!” But I can’t say that. I know that the ability just to watch television is a blessing to some who are tormented by their illness. I know how in the early days of recovery, just the smallest accomplishments, like taking a shower, reading a book, or talking on the telephone are major victories. And these victories should be celebrated. You should love yourself into health and not whip yourself for failing to attain what is beyond your reach.

From my experience, I know that one can get better, even if that getting better is counted in the smallest of measurements. You can inch forward because the brain is plastic. That means that when the brain is injured, like from the onset of an illness, as long as it isn’t traumatized afresh, it will start on its own a journey of healing. The brain can strengthen and change. The brain is complex, and if the spirit is willing, new territory can be explored.

The only caution I would add is that for some people, especially my segment of the schizophrenic population, recovery can be a process that takes decades. I had to wait about 10 years before taking a shower became easy – and honestly sometimes it still is an ordeal. Now I can read three books in a week, but I remember for several years being unable to read anything other than the simplest magazine article. At the onset of my illness I had only a sliver of the concentration that I have now. It has taken me over 20 years of recovery to have the power and the sophistication to put my thoughts into an article such as this one.

Success stories about people who have serious thought disorders are good to hear. It is encouraging to know that the future is open and that recovery is possible. But no advocate should ever tell a success story without the knowledge of the shadow stories, the cases where having a mental illness involves failure and setbacks.

My father, after watching me struggle for years with the symptoms of my illness, finally gave up elaborate recovery schemes and said, “I just want you to be happy”. It is the simplest of hopes, but it is the foundation of recovery.

1 comment:

  1. Hi Karen,

    Thanks for sharing your article. Your motivation for voicing your concerns seems to come from love, though I know you are also annoyed with the recovery model. Personally, I am confused. I know I am "in recovery" and out of acute psychosis, though there are times when I slip backwards a bit, but I continue to struggle. I don't work part time or full time and I'm not sure whether I could. This is how I've lived my entire adult life. I live alone. I have never been married or had children in a large part due to the fact that I've been in this illness in one way or another for over twenty years. Most people would not wish my fate on their children. And yet for all that, I know I have intrinsic worth in the form of intelligence and creativity and I feel blessed to have it.

    I have supported the recovery model, but my standards for recovery are are similar to yours and involve the ability to seek and find some happiness. When I was acutely ill I despaired of finding that happiness. Very gradually I did find it. It's not perfect, but it's enough to live on. But I have to admit that I don't know many people who suffer from schizophrenia and so I don't know the extent of other people's suffering. The people I know online are all creative and intelligent, but they still do have times of suffering and yet I still persist in seeing them for the most part in recovery and not lost in acute psychic pain.

    I don't really know. You are persuasive in your point of view and also loving kind towards those who do still suffer or who find their happiness in small things rather than in large ambitions. And so my heart turns towards you. I do hope your article gets published. Bravo for sending it out there! Your writing stands up and you should be heard.

    Kate : )


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