Stigma of Mental Illness by Rev. Samuel A. Trumbore

First Unitarian Universalist Society of Albany

"Stigma of Mental Illness"

Rev. Samuel A. Trumbore May 5, 2002

Sermon

So strong is this force
so weak our fantasies
so engulfing all of our energies
so creating remorse
so denying our plea
like a bandit stealing our dreams

Mental illness is a disease we all recognize. We have all felt different and unacceptable attending a new school, starting a new job, visiting another part of the country or world. We have all felt awkward, not fitting in with the jocks, the cheerleaders or the brains in high school - even if you were one. We have all lost sleep obsessed with worry, our thoughts racing through our brains. Multiply those feelings by ten or a hundred and you begin to enter the world of the mentally ill.

I was scared to death, the first day of my internship at the Delaware State Mental Hospital. I kept my distance from the patients as I walked the spacious grounds and confining halls of the facility in case one of them went berserk and wanted to attack me. I'd stand near the staff in case one of the patients decided to mess with me. It took a couple of weeks before I felt comfortable sitting on a bench with a patient keeping my eyes on them and not the surroundings.

And then I started liking a few of them. I started realizing they weren't the alien creatures I expected them to be. I was attracted and repulsed by a slight fellow in his thirties I'll call Randy who had been in the hospital off and on his whole life. His anxiety, mental disorganization and vulnerability prevented him from being able to blend into society, even with medications.

He asked me, "Am I going to go to heaven Chaplain? I don't want to burn in hell. I love God. I just want God and not the devil. Am I going to heaven?" again and again. Using spiritual language, Randy was asking a deeper question. He was asking me, "Chaplain, am I worthy of God's love. Could God love a wretch like me?" He pushed me up against the limits of my theology. I wanted to comfort him but didn't know what to say or do. I felt unworthy too as I struggled to find a way to respond to him. I realized I too had my own limitations in my ability to express my feelings, which, for Randy, were right on his sleeve.

This is the challenge we all face. Relating to people just like us is easy because we share a common language and experience. Reaching another outside that zone of comfort can be scary. So just imagine the terror mentally ill people experience when people begin treating them as if they're strange; when their parents, their sisters, brothers and friends pick up the phone and begin the process of committing them to a mental hospital.

Let us open our minds and hearts to their world this morning. Some of you, I expect, will know this world from personal experience. Others will find it disturbing and disorienting. May we be touched, opened, even healed by their voices as they reach out to us with their poetry and narrative.

First I'd like to introduce you to Geoff through his poem titled "Depression"

Depression by Geoff Allen

Black mood
Black day
Black life
Black world
Black thoughts
Black dreams
Black
Black
Black
I cannot hide from the blackness
It is inside me
I cannot run from the blackness
It will divide me
Down
Down
Down
In the black hole I drown
Drowning in my own blackness
No hope
No future
No light
No fight
No life
I drown

While most of us haven't been clinically depressed, we can all relate to that constricting feeling as the world shrinks in around us. The future sours like milk left in the sun. Hope fades into the distance like a missed train. Despair settles in like a cold fog that drenches the skin. We cry out with King Lear, "O let me not be mad, not mad, sweet heaven. Keep me in temper, I would not be mad."

Now hear the other side of depression in an excerpt from a poem by Geoff titled Mania:

Mania by Geoff Allen

My brain is charged with electric force
I feel as if I could walk though walls
I'm not mad and I'm not insane
I have lions and tigers in my brain

In our society, mania isn't a disease it is a sought after way of life. Achieve, work hard, strive for success, fight your way to the top onward and upward forever. Use caffeine and other legal and illegal stimulants to light your fire and cultivate the sweaty desire to drive you forward, further and further…until you snap. And then it all falls apart like a shower of dry needles from a spent Christmas tree ready for the curb.

I'd like to share one more poem with you titled Daily by Mara:

Daily by Mara McWilliams

Daily routines,
purely mundane.
Then suddenly,
From the back of my mind,
Images, blurry with feelings.
As if a suit of past emotion and feeling
Has been strapped onto me by invisible hands.
Touching, searching, scraping me.
Drilling into me who I am and am not.
The ache inside grows larger
As I struggle against this imposed suit of happy skin.
So much thought, I can't speak a word,
The words seem ready as they swim through my head,
But I open my mouth to voice my declaration,
But nothing,
Nothing comes out.

I feel this way when I'm under a lot of emotional stress. I tend to shut down and clam up. The words don't come out.

When I felt inadequate responding to Randy's inadequacy, all I could say in response to his fear of going to hell was, "I don't think so, Randy." I didn't have the words to say, "I feel inadequate too Randy trying to help you. I'm afraid I don't have the depth of emotional expression to touch your pain. I'm not sure I'm worthy to be your minister."

Did any of these poems speak to you as they did to me? I find it amazing that even though I've never experienced the intensity of these kinds of mental disturbances, the words connect with some of my life experience too. I've experienced times when I've been under a lot of pressure and my emotions went haywire. I've experienced sadness, pain and isolation. I've experienced feelings of panic, fear and anger charging through my brain that persisted long after the danger was gone.

Even though we might connect with the poetry, the experience of mental illness is of a far greater magnitude. The most significant factor of difference is the lack of control. When I get upset about something, I'm over it in a few minutes, hours or, on rare occasions, days. For the mentally ill person, even a minor upset can begin an escalating cycle of distress that can lead to a mental breakdown.

We use words like depressed, manic, crazy, and paranoid in our everyday speech. The actual psychiatric conditions described are far more serious and overwhelming than our casual usage. Geoff describes his experience of having schizophrenia as follows:

If I had to select one word to describe schizophrenia, it would have to be chaos. Chaos of thought. Chaos of emotion. Chaos of spirit really. Chaos of a kind that is quite unimaginable unless you have experienced it personally. {As if some external force or entity is in control of your very thought & feeling and is turning them on & off at a whim}

I'd be terrified of the feeling of being possessed by "some external force or entity." If this happened to me, could I even use the personal pronoun "I" to describe my experience as I'm blown around like a leaf by the winds of madness?

This experience of not being yourself is central to the damage mental illness does. If I get an infection from stepping on a rusty nail, I might chastise myself for not being careful but I won't feel like I'm a bad person. While under the influence of mental illness, a person might say and do things for which they later feel tremendous guilt and regret. The sense of not being yourself and out of control easily leads to feelings of shame. The person thinks, "Not only am I someone who occasionally does bad things. I'm possessed by badness therefore, I must be a bad person."

Sadly, our society reinforces that message. Rather than helping people to separate the disease from the person, all too often society stigmatizes the mentally ill and rejects them. This rejection feeds the self-destructive cycle of shame and guilt that wrecks their feelings of inherent worth and dignity.

This past week I've been rereading a book called, I'm not crazy, I just lost my glasses by Lonny Shavelson. It is a collection of excerpts from interviews with people diagnosed with chronic mental illness in the San Francisco Bay Area during 1980's. The book lays out in word and picture, the wide spectrum of mental illness. Join me as we hear their voices that can begin to connect us with Randy's world.

Meet Karen as she wrestles with being normal:

Outside the hospital, your checking yourself a lot to see -- is that a normal reaction or is that a little off? Last week there were three people at work and all at once they went to the supervisor's room. I was alone, thinking, well, should I be paranoid or not?

We know Karen's experience don't we? We all have wondered if they are talking about us. Unfortunately, Karen is probably right.

While today, medications can stabilize the biological imbalances that drive mental illness, for many the devastating social stigma remains. The mentally ill, like all overtly disabled people, people of color, people of non-heterosexual orientation, in other words, people who appear different meet intolerance. Society judges different as bad.

The social separation the mentally ill experience stimulates strong feelings of grief and loss. After all, the mentally ill want what we want. They want a satisfying relationship with a significant other. They want a roof over their heads. They want to eat and drink and be warm in the winter and cool in the summer. And most of all, they want a meaningful life. The frustration they experience in pursuit of these ends attacks their sense of self worth. Tormented by the feeling of worthlessness, driven by internalized social rejection, many attempt to end their lives.

The tragedy for everyone of the social stigma of mental illness is our confusion of the boundary between sanity and insanity. Sometimes it is hard to separate what part comes from mental illness and what part is just being a little different … or perhaps inspired.

Meet Clementina:

My diagnosis is adjustment disorder, which means I don't fit in. For any intelligent human being that's a sign of a healthy spirit. I resist the insanity we live in. I was a successful young artist… but I got ripped off…and moved deep into the woods. I became so isolated and reclusive I lost touch with reality…

I have uncommon knowledge that needs to be shared…There are those that are labeled crazy that in fact become our teachers. We all know that crazy artists die then become famous. I will teach people before I die, in my time.

Meet Brad:

I was going to be a rabbi and I began to look at my spiritual self. In a magical moment I stepped out of reality and felt myself above my body. It was the beginning of all things -- the essence of all things…

Finally I just let it out. I said, "I am the Messiah, I need to deal with you - people are starving." I began speaking of the second coming of Christ, and I was in the hospital that afternoon…

The medicine cut off the voices immediately. I was impressed. But I was still the Messiah. I've had too many profound experiences to not believe I am the Messiah…

The voices are gone. I have a good job now. But if they say it is bad to think you are the Messiah then they haven't cured me. I can't lose God's message that I am on the right path.

So just how do we know Clementina isn't an artistic genius or Brad isn't an inspired prophet? Or that they may be in touch with aspects of reality we don't have a clue about. My own exploration of the range of human experience cultivated through books, teachers and spiritual practices has left me with more questions than answers about the nature of reality.

For all their maladaptive socialization and quirkiness, each voice you've heard is from a person who demonstrates inherent worth and dignity. They have something of value for us if we are willing to listen.

Meet Laurie

I consider myself recovered. I take my lithium and I don't screw around… I really sat in a room for two years -- just barely went out to get food. Coming from that to where I am now I've become a very strong person. The love and confidence from my family made a tremendous difference. My goal is to completely remove myself from the mental health system. I can make it.

Laurie can make it and we can help.

I spoke with Cathy Baker who supervises the Compeer program. It's a support program that pairs a volunteer with a mentally ill person for social visitation. She shared with me the challenges of her clients who were able to manage their symptoms with medication and live in the community. They remain outsiders, stripped of their dreams often during their young adulthood. Most of them don't have spouses, jobs, cars, or friends. The only people they relate to on a daily basis are other mentally ill folks and mental health professionals. Many have little or no contact with their families. When they meet people well integrated into our society, they have few points of connection, which makes it hard for them to bridge their isolation.

I asked Cathy what value a social visit might have for a mentally ill person. She stressed having contact with a friendly visitor gives them access to normalcy, consistency, acceptance, even a sense of family. Crazy or sane, we all need the warmth of human companionship. What benefit might the volunteer receive? Cathy told me of a Vietnam vet she paired with another vet. As he reached out to help ease another's pain, his own inner struggles were healed in ways he hadn't expected. Professionals who work with the chronically mentally ill all have stories of how their lives have been touched and changed. As William James said, "There but for the grace of God go I."

Frightening as mental illness can appear, it doesn't erase a person's humanity. My experience of working with the chronically mentally ill has shown me again and again the tremendous value of a little love and kindness. We are fortunate to live in a time when effective medicines allow the mentally ill to gain a great degree of control over their lives. But the medicines can't heal the social disease of stigmatization and rejection.

Only we can offer them that medicine.

Never by Kristen O'Reilly

      Never
                 Never
                            Quit
Just surrender to life as it is.
Even though you feel you're through
There will always be another twist
Another road to follow
Another path to find
Never
Never
Quit
Even if you lose your mind.

Benediction By Lonny Shavelson

I wanted to find a way around this insane public view of what crazy people are about-- to slip by the media-propagated images of droolers, screamers, freaks, drugged-out zombies, psychotic killers and mind-scrambled lunatics. I needed to shed the protective armor of psychological jargon. Mostly, I wanted to overcome my own fear…

I've spent three years on this project and I have no answers. But I am no longer afraid. And I have gained compassion for a large number of people who are different enough in this society to be called mentally ill.

May we too challenge our fears of those who are different and risk discovering the richly hued beauty of otherness, and, by so doing, find the other within ourselves.