Thursday, April 14, 2005

IT IS NATURAL TO NEED SUPPORT

To be profoundly rooted may be our single greatest need. I know that I feel the need to be connected. It seems to grow as I age. It has never seemed easy for me to find a place to call home. I am sure some of it is due to moving many times over the years. When I read or hear of someone being in the same small town or even in the same house all their lives, my heart hurts.


My illness has also played a part in me feeling rejected and like an outsider. The illness (bipolar disorder) itself has built in inhibitors like depression which keeps you from wanting to socialize and mania which keeps people from wanting to be around you. There is also the fear people have of being around people with mental illness. The fear that comes from us being portrayed so often in the media as violent and the fear they feel when face to face with mental illness of the madness in their own minds.


As the downsizing of state mental hospitals started taking place, folks were placed in the community. We were suppose to be better off in the community than in the hospitals. Almost a half century since the big move to downsize the hospitals began, mental health professionals have not even come close to facilitating the results that the big “into the community” movement promised.


Most of us still live lives very much alone and in poverty. We may have our meds, our monthly visit to the psychiatrist and most of us, but certainly not all, have a roof over our heads. Is this what being rooted means? Is this what being part of the community means?


Mental health professionals have written about natural supports as a way to help us make a place for ourselves in the community. The have written about supported education, employment and housing. There are two problems here. First, there is nothing natural about most of the things they write about natural supports. Second, the supported education, employment and housing programs have been funded at such a low level, if at all, that they support almost none of us.


To be truly rooted takes the natural supports found in family and friends. Takes having a place to live you can call home and not just a shared room in a program. Takes being able to get an education so you can get a job with the dignity of a paycheck. Takes even being able to take a vacation like normal folks.


It is not hard to describe natural supports or what truly being rooted in the community means, but it seems hard for those helping us to figure out how to help us get there. Is it because they view our dreams as impossible? Are our dreams too expensive for society to help us reach?


There isn’t any doubt that low expectations on the part of some of the professionals, friends and family members who work with and help us is a hindrance to our dreams, but the truth is we may be the biggest roadblock. To dream again you must feel worthy and able to reach towards the sky. Some of us don’t think we deserve anything but dirt in our faces. Others of us think we are too disabled. What we think and feel matters more than any other factor in whether we can learn to dream again.


When I first came out of the closet, so to speak, and began working on mental health issues in 1988, I had already had a diagnosis for over 20 years. I had been locked away in mental hospitals for months at a time. I was in my second marriage and it was a mess. I had held almost 50 different jobs in a span of 22 years. Nothing about my life was rooted. From that viewpoint I tried to determine what would help folks like me the most. I answered the question, but soon went on to other things.


The answer was that if I and my fellow sojourners could feel the love of the Creator then we could learn to dream again because with the Creator all things are possible. That is why I believe the best place to find natural supports is in the faith communities. If you want to help us to become rooted, help us find the arms of the Creator. In that embrace is the natural support needed to dream again. Dreaming again is the beginning of becoming rooted. Being rooted is our greatest desire. We all can reach it with some support. It is natural to need support. We all do.
Ed

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Wednesday, April 13, 2005

A Prisoner of Fear

When you live with a mental illness or have a person you love living with one, you become very aware of how the world looks at the issue. In one way or the other mental illness touches every life in this country and around the world. Mental illnesses are not rare. They are not just diseases of the poor. They strike at all levels of society and all races. Why then do we seem to have more trouble reaching out to the mentally ill than to folks stricken with other ailments? Because we all seem to fear going crazy even more than being diagnosed with cancer. It is this personal fear that makes us want to look away from a person suffering from mental illness as though they might give it to us.

I have been diagnosed with a mental illness and I know the fear that strikes my heart when I think my mind will not work well enough to get me through what I have to do. My broken brain and the madness of my mind have caused me to withdraw many times from the world around me. I fear being thought of as crazy. I fear the failure that might come if I get sick at the wrong time. I don’t even try things that I could do because of the fear that in the middle of them my brain and mind will fail me. I am a prisoner of my fear.

I believe the world fears me and folks like me because we remind them of how close they walk on the edge of madness themselves. I wish we were more welcome, but we are not. Not even in most faith communities. The following words of Pope John Paul II says how it should be, but the painful truth is that we are far from this wonderful ideal.

"[The Church] reminds the political community of its duty to recognize and celebrate the divine image of man with actions that support and serve all those who find themselves in a condition of severe mental illness. This is a task which science and faith, medicine and pastoral care, professional skill and a sense of common brotherhood must help to carry out through an investment of adequate human, scientific and socio-economic resources...
Whoever suffers from mental illness 'always' bears God's image and likeness in himself, as does every human being. In addition, he 'always' has the inalienable right not only to be considered as an image of God and therefore as a person, but also to be treated as such.
It is everyone's duty to make an active response; our actions must show that mental illness does not create insurmountable distances, nor prevent relations of true Christian charity with those who are its victims. Indeed it should inspire a particularly attentive attitude..."
-- Pope John Paul II, International Conference for Health Care Workers, on Illnesses of the Human Mind, November 30, 1997






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Ed

Tuesday, April 12, 2005

Who Decides?

An Associated Press piece, Vienna Austria, written by Danica Kirka starts out, “Johann Gross survived three years of Nazi laboratory experiments under an extermination program that called for snuffing out 'worthless lives.' That trauma shapes the Austrian's view of Terri Schiavo’s death. 'No people in the world have the right to kill another. It's murder,'said Gross, 75, while visiting an exhibit on wartime experiments at a Vienna psychiatric hospital. 'It's the same as the Nazis did." Gross' reaction may seem extreme, but there are many in Austria and Germany whose attitudes toward euthanasia are clouded by Hitler's horrors.' ”

What were some of the experiments like? Later in that same AP story we read, “With the approaching 60th anniversary of the end of the war, the experiments on children are being remembered in two exhibits in Vienna. Gross will take part in a ceremony later this month honoring 400 children slain by the Nazis at a city clinic. Gross was sent to the Spiegelgrund clinic as a child because he was judged asocial and because his father was missing a hand. He said he was given injections into his feet that made it impossible for him to move for weeks unless he crawled.”

In the "Psychiatric Bulletin" (24:347) of The Royal College of Psychiatrists the following is found. “The 11th International Congress of the World Psychiatric Association (WPA) was held in Hamburg during August 1999. The most memorable feature of the successful event was not the presence of 10 000 psychiatrists from 96 countries, nor their 6000 papers, nor the elegance of the rebuilt city, but a poignant exhibition prepared by the German Society for Psychiatry, Psychotherapy and Neurology. The presentation, titled ‘In Memoriam’, described the wartime extermination within Germany of 180 000 psychiatric patients. The killers were their psychiatrists.”

I could have been among those selected because manic-depression or bipolar illness was among the two top psychiatric disorders selected as criteria for death. What does this have to do with today? Well as a disabled person who has often been viewed as not up to par, I have an uneasy feeling in the pit of my stomach when the world is having a discussion about when life is worth supporting.

In our world today we value some lives more than others. Children in Zimbabwe where I grew up as a missionary kid do not seem to hold the same value as a child living in the suburbs of Atlanta. Poor people do not seem to have the same value placed on their lives as rich folks. The disabled not the same as the well.


Who decides? What do they use as a measuring stick? That is the real problem. The only stick we have is the one we use to beat each other up with. What we really need is to decide there isn’t a need to measure each other, but rather only the need to embrace the life in each of our fellow sojourners.


You can comment on here without signing up or you can contact me directly by email at eecoop_2000@yahoo.com

Ed

Sunday, April 10, 2005

Stigma Remains Alive and Well

My wife and I were standing on the front porch the other day looking out over the yard. It was covered in dandelions and small wild violets. I thought the color they added to the green made the yard beautiful and said so. She replied that most people who care about their lawns would not think it was beautiful. I think she thought it was though.

I understand it is not normal to want what people consider weeds in your yard. In fact, they sell chemicals to control and stop the growth of anything but the grass. My yard is not normal, but to me it is beautiful. It is what is naturally there and the color brings a smile to my face.

I have never been considered a normal person. My mind has always been full of weeds. I take chemicals to control their growth. I am not saying I should not try to control the madness of my mind, but sometimes I wish that the chronically normal people of this world saw more beauty in me and folks like me.

Those of us with a severe mental illnesses are not welcome in most places just like the dandelions and wild violets are not welcome in most lawns. Even places like mental health centers and hospitals, where people are suppose to be trained to work with us, have a hard time learning to treat us with respect and dignity. I spent years in south Florida doing what they call “consumer sensitivity training” trying to help professionals see us as fully human.

You may think I am making a big deal out of nothing. You may think that the stigma of mental illness has almost been done away with by all the education done by groups like the National Alliance for the Mentally Ill. You would be wrong. Ask most people with a mental illness or their family and they will tell you. Stigma is strong. It remains alive and well.

My prayer is that someday we will be welcomed in faith communities, at schools and in the workplace with the respect and dignity we deserve. That we will no longer be considered weeds, but seen for the beauty each one of us have no matter how different we may be. That day will not come too soon for me and my fellow sojourners and their families.


Ed


You can reach me at eecoop_2000@yahoo.com

Wednesday, April 06, 2005

NOT ENOUGH TO LIVE BY

With the death of Pope John Paul II, I have started thinking more about my own faith and spiritual life. Even though I was raised in a fundamentalist Christian church which in my youth taught us to believe the Pope was in league with the devil, I have come to love this Pope. The strength of his faith as he faced death is to be admired. I think the world will miss this man.

Another man who faced death with more courage, dignity and faith than I could imagine was my brother-in-law. Tom Edwards had spent his life as a minister, missionary and writer among other things, but it was the way he faced his own death that made his life stand out to me. He emailed me often before he died. We had never been that close really, but his emails were a ministry to me during one of my deep depressions. How he found it in his heart to minister to me as he faced his own death is still a mystery to me.

There is no doubt in my mind that Tom had faith in his own salvation and in the God he had served all his life. I have heard him preach about faith and belief, but his all time best sermon in my mind was the way he faced his own death. It was with a certainty I had never seen before and have not seen since in a person that I knew personally.

Maybe Tom Edwards and John Paul are meeting in heaven right now. What will they discuss? Of course I really have no idea, but maybe they will chat about why some of us have such a hard time with faith.

I started preaching in my early teens while in Rhodesia, now Zimbabwe, with my parents who were missionaries there. I was last in a pulpit over a decade ago speaking about the need for the church to reach out to folks like me who suffer from a mental illness. Do I believe anything? Am I a person of faith?

Among other things Tom’s faith helped him face his own death. My faith has kept me alive. Since a child I have been suicidal. Sometimes I have been locked away in a hospital, but the real thing that has kept me alive when I most wanted to kill myself was my faith. I have just enough faith and belief not to risk making God mad at me by killing myself. Not enough to live by, but too much to die with. Maybe someday I will have enough faith to face the day of my death with the dignity of Tom and John Paul.


Ed

You can contact me at eecoop_2000@yahoo.com

Monday, April 04, 2005

WE SHOULD BE SURE

Terri Schiavo’s death hit me harder than I thought it would. I had followed the story for years and thought I had come to terms with the issues and knew what I thought about them. By the time I heard she had finally died, I no longer felt so certain of my views. Now I am sure I am certain of nothing about it at all.

At first I was convinced that only her husband had the right to make decisions for her. I suppose I came to this conclusion because I would want my wife making the decisions for me if I could not make them for myself. I would not want others trying to interfere with my wife. I felt very sure of this.

Also, I was confident that I would not want to live in a persistent vegetative state with strangers handling my body like it was a sack of potatoes. My own certainty on this matter made me convinced that Terri would not either. Of course like most other people with opinions on this, I had never even laid eyes on Terri in person much less heard her state her wishes about the matter.

Too, I was convinced that she would feel no pain as she died because she had so much brain damage that she was unaware of herself and her surroundings. Then a single phrase in Time magazine stopped me dead in my tracks. To the question “Does a person in a vegetative state suffer after nutrition and hydration have been withdrawn? No one knows for certain, of course, what it feels like to be unaware__” (Time, April 4, 2005)

Yes, no one knows for sure. Not me. Not you. Not the medical experts. How could I have been so sure of something no one could be sure of? That is the question we all should be answering.

This is what I think I know. We should always err on the side of life. My wife tried to make me understand this each time we discussed it. I was trying to make big philosophical points like how to determine when a person was dead. My wife was trying to make the point that life was too important not to be sure. We should be sure.


Ed


You can reach me directly at eecoop_2000@yahoo.com