Saturday, September 25, 2010

Two Schizophrenics Talk

Her name isn't Victoria, but it is old fashioned, like Victoria.

It was after the Sunday church sermon, during coffee hour. People were gathered in the church parlor snacking on cookies and fruit. Nobody was talking to Victoria because Victoria is sometimes hard to talk to. Victoria is a schizophrenic who I suspect does not take medication.

My minister says that sometimes Victoria is clear as a bell. One day she walked into the church and said to the minister that there was poison ivy growing under the hedges that circle the church yard. Victoria offered to get rid of the poison ivy herself. She apparently had some money because she walked to the hardware store that is across the street from the church, got what was needed to protect herself from the weeds, and did the weeding that day. But there have also been times when the minister has been distressingly pressured by Victoria, trying her best to talk a wild woman down from high, excited flights of fancy. Sometimes when prayers are collected from the congregation during service Victoria will speak up. Often her prayer request makes no sense. She makes a long and convoluted statement involving many themes, for instance sheep and the weather and her father, and the minister at the pulpit tries to say something short in translation. Usually Victoria is quiet, but she is not shy.

Victoria has long gray hair streaked with silver. She wears glasses and has rosy cheeks. The rosy cheeks aren’t from make-up, sunburn or blushing, they are red from little broken blood vessels under her skin. I have only ever seen her in dresses, and she likes to wear layers of dresses, short over long. My husband and I see her when we are in our car and when we are walking around town. Victoria likes to walk everywhere. Once we passed her by and she was angrily pulling at the branches of a large bush and talking to herself. Another time we saw her in a coffee store and she was calmly reading the daily newspaper out loud, for all the patrons to hear. There are rumors in the church that Victoria is secretly very intelligent, and was highly educated before she became sick. “She was a genius” one woman said to me.

The Sunday I decided to talk to Victoria she was wearing a green blazer over a yellow flowered dress that fell below her knees. Peeking beneath the flowered dress was a dress with a hemline that swept the floor. The long dress was bright, bold pink.

“What a lovely color of pink” I said to Victoria. “Is that dress Indian?”

“I don’t know, but the top has rhinestones on it” said Victoria, and she pulled up the flowered dress so that I could see the top of the pink dress underneath, and indeed, there were little clear rhinestones dotting the bodice. I realized that it was a prom gown.

“I got it at the drop in center” said Victoria, mentioning the town’s center for distributing charity donations of food and clothing.

“It was smart of you to dress in layers today” I said to her, “it was cold this morning and I needed a coat.”

Victoria then told me a story of reaching for the pink dress in her closet, and how she almost reached as well for a winter coat, but that the winter coat is no good to wear because she discovered that it buttons on the left, and that means it is a man’s coat. She said she has four winter coats to choose from, and she is often fooled as to whether or not the coat was designed for a man or a woman.

“When I was young” I said to Victoria, “I often wore a man’s coat.” Her eyes grew wide and on her face was an expression of amazement.

“But you have to understand” I explained, “I was punk and I had even shaved all the hair off of my head. I didn’t follow the rules of society.”

Victoria said, “I’ve thought about shaving the hair off of my head because that would mean my hair might grow back thicker and stronger.”

I made a sour face and shook my head in discouragement. I did not wish to become the example that might persuade her to become bald.

She continued. “But I have discovered what to do to condition my hair and make it strong. One day I was eating tuna casserole. The tuna had in it mayonnaise and little pieces of pasta. I had eaten all I wanted and there was still some left in the bottom of this little square plastic container. So what I did was I took a squirt bottle, and I put all of the tuna casserole into the squirt bottle. I mixed in some water and let it stand for a while. Then I squirted the mixture into the roots of my hair. It acted like a conditioner, I think the pasta and mayonnaise is good for your hair. My hair got volume. I had not washed my hair for about ten days. And then a logging truck went by and ‘whoosh’ all the volume disappeared.”

I thought I understood the end comment about the logging truck. Knowing Victoria, and often seeing her walk by the side of the road, obviously she was referring to the wind a big truck made as it passed her by. It may have been going so fast, and so near, that it probably blew about and disordered her hair. But the picture of voluntarily putting food in your hair, old tuna casserole no less dismayed me. At first it seemed gross. But then I remembered a story my mother once told me about my grandmother. Using food for cosmetic reasons is really an old and esteemed practice.

“Do you know that my grandmother used to rub butter into her face to make her skin soft?”

Victoria pondered this example of a beauty treatment. And then she said, “I got a crème that is in a stick from the drop in center. You are supposed to use it under your eyes to get rid of wrinkles but I use it all over my face.”

Victoria might be mentally ill but she has the ordinary vanity and worries about aging that all women have. She doesn’t realize that by wearing layers of mis-matching clothing she looks the part of a madwoman, but I think that she is really trying, to the best of her ability, to be a lady. On some days she even pins her hair up in a loose bun. With her love of wearing long dresses, and her tall frame made lean from hours of walking, she often has the silhouette of someone from a past era, when women in skirts and dresses was the rule of the day.

“I buy Lubriderm, that is the brand name for a good moisturizer. I get it at the pharmacy.”

Victoria seemed understand. And she seemed to think she had something too like what I had.

“I have a bottle from Rite Aid. Do you know the Rite Aid shield? It is red and blue. First a line of blue, and then a line of red. I put that on my face too besides the crème stick.”

No doubt the pharmacy Rite Aid put out a generic brand of moisturizer. It was interesting that Victoria described, using concrete details, the tiny parts of consumer packaging that most of us would overlook. What most would consider unimportant made an impression on Victoria. I had the fleeting impression of someone who might notice the parts before the whole, or at least, whose powers of observation were keen.

But try as I might, I couldn’t get the example of using food in your hair as a conditioner out of my mind. I wanted to give Victoria a dose of conventionality. So I began describing how I shower. That I use shampoo on my hair first, and then I use conditioner, that they make conditioner that is specifically intended for your hair. I explained that it is this artificial conditioner, not natural food, which I use on my hair.

One of the ways to talk to a person who does not follow conventional forms of conversation, in the case that their thinking is disordered from the presence of a mental illness, is to be as honest, real and simple as possible. Talking to someone whose mind is influenced by psychotic thought sometimes feels a little bit like talking to a child because the psychotic person sees the world as a place of endless possibilities, a world where everything is new and important. When an adult talks to a child usually the conversation is candid and revealing because the adult wishes to be clear and instructive. Happily, children draw us out of ourselves. So does, I believe, people who are mentally ill. It seems obvious to me that if you are talking to a person with a psychotic based illness that is active at that moment you best put away sophisticated pretenses and postures. Talking to somebody who is sick isn’t about talking down to them, it is about talking with naked humility and rigorous truth about what is essential in life. Personally I find this refreshing, although it often means being quick on your toes, because the schizophrenic sometimes will take the conversation into unseen twists and turns. But the challenge to you, if you are giving care and love to a schizophrenic, is to really give a little piece of yourself to them. Because it is almost certain that the schizophrenic is giving you honest and important little pieces of themselves. I almost never get a sense that an unmedicated schizophrenic is lying to me. They may be elusive and secretive, and they may be talking delusions, but they usually believe in what they are saying. In people who the illness is dominant, as long as they aren’t manic or under the influence of street drugs, I don’t get hot air and I don’t get fluff. In talking to Victoria what I consistently felt was that I was getting all the important facts and details – as she saw them.

Since I had described how I bathe, Victoria wished to tell me how she bathed. She told me that the pluming in her home has not worked for several years now, and that if she wants a shower she has to go to a nearby hotel and use their facilities. Otherwise, what she does is heat water over a stove and scoop water out of a pan. A little of the effort that it took for her to bathe, having primitive circumstances was communicated to me. And then I took a chance and told her something that I would not normally admit to someone without an illness.

“I took a shower last night because I knew that there would be no time in the morning before church. I was tired, and I did not really want to take the shower. It is always hard for me to go from being dry to being wet. For some reason, I don’t like showers. But it was church, and you know, you really want to be at your best for church.”

Victoria gave me a look of sympathy, and as she began to nod slowly, something else, something deeper was agreed upon as well. We had a moment where we saw that we both shared an important value. Victoria, like me, felt the sacredness of church. She understood perfectly that you go the extra distance, and try harder, for the sake of church. My sacrifice was taking a shower when I really preferred not to. I don’t know what her sacrifice was. Perhaps it was the precious money that she put in the collection plate. Or maybe she made the effort to set an alarm clock in order to get to church on time. It could be that she agonized a little over what to wear, in order to look her best. It could have been that simply coming to coffee hour, and milling about with strangers who do not talk to you involved courage. But church for her, like for me, required us to be at our best, and for us, being at our best involved a struggle. We both had reverence for the religious service on Sunday morning that shaped our behavior. We both did battle with our will, having internal forces that would push us in one direction, but bravely pushing back in the other direction. We were two women who that morning had been triumphant in doing our duty for the church. Simply being present, and involved like all the other ordinary people, had taken us to the furthest reaches of our ability.

Victoria told me her name, not knowing that I already knew it, and put her hand out for me to shake. I shook her hand and then told her my name. I think that she will remember me next time I see her in church.

The conversation with Victoria went smoothly because I was not afraid to hear things that were strange, outside normal experience, and I managed to stay as grounded and honest as possible. Victoria could be bizarre but I tried to stay true to how I experience reality, which is, mostly because I take medication, painful but not too bizarre.

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.