Saturday, October 30, 2010
Overindulgence
After I bought the earrings I checked our checking account and it looks like I will have to do what I was hoping to avoid this month. I will have to dip into savings to cover the monthly bills.
Also last night I ate all the chocolate my husband bought for me. All two boxes worth.
So I binged on money, buying solely for myself, and I binged on calories. Thus it seems I have done nothing virtuous, except perhaps I swam last night for 50 minutes. So I exercised. Am hoping on going for a walk today, it is beautiful outside, and then going swimming again on Sunday morning.
I got a call and an envelope from the church for the yearly pledge drive. I have decided not to tithe to the church this year, as I did last year. It seems that most Sundays my husband and I have been going swimming during sermon hours. When I do go to church there is a problem. I participate in the social coffee hour after the sermon and then come home feeling as though I have just walked through an ordeal of terror. Smiling and making chit chat is terrifying for me, but I hide it very well. I just think about the difference between the person I am talking to and myself and the difference seems big and horrible. I feel like such a crippled person on the inside. I think I would like to save myself from the social interactions which I know on the one hand nourish me, but on the other hand completely wreck my peace of mind. The only thing that doesn't end in emotional terror is the ladies spirit group, a group of elderly women who meet Thursday afternoons. I haven't been going to that group but they are sweet, and they make me feel welcome. One of the other problems with church is that I have made no friends. The elderly ladies are friendly, and even endearing, but nobody my age has made a connection with me. There is familiarity with faces but an underlying loneliness at church. It is probably mostly my fault. I'm not naturally social. And I'm horribly shy.
I have a bible which I intend to read all the way through. It is one of those types of bibles where you read a section a day, they are clearly marked, and by the end of the year you have gotten through the whole bible. I am curious about the bible, I think I owe it to myself to really get to know it.
I read a lot of religious books and I will continue to do that. I would be happy just go to women's spirit group although that seems wrong if I'm not financially contributing to the church. I wish, if I could have anything at all, to financially contribute to the church and to buy the swimming membership, but they come out roughly to be per year about the same. I know my husband would throw caution to the wind, and do both, but in good faith I can't do this. My expenses for this next year have got to be less than my expenses for last year. My husband is working a little overtime but the money seems to be used up. I hate dipping into savings, and yet, this happens again and again. It was worse when he wasn't working overtime.
I fear as well that the project my husband and I are working on, a book about relationships and schizophrenia, is a joke. My faith in my writing powers is small. My faith in my husband's writing powers is even less than in my own. We clash on the outline of the book. I keep changing and "improving" the outline, because I feel that the way the outline stands it is stupid. My husband likes the outline. I think my husband lacks education and is an idiot. I am afraid that I am a downer and not making the project any fun for my husband. I say to my husband, "you are merely copying what I have written" and he says, "no, this is all new". What is reality? We are going to have to rely on friends to proof read our writing for us because we simply can't agree. Also my husband knows a lot less about schizophrenia than me and he is googling info and getting all his knowledge off the internet. His writing reads like a high school term paper. I don't want to quench my husband's zeal. But I'm afraid that I'm damaging his ego. My ego is so low that I'm starting to think I'd rather be dead. New earrings, new necklace, anniversary date and I feel like road kill. Run over and squashed by life. I hate myself. I haven't accomplished anything. If I die tomorrow I leave behind a grieving husband, grieving mother and that is all. Everyone else can do without me. I've accomplished nothing significant in this lifetime. Yes, the despair I woke up with is catching up to me now.
I better go watch television. When you feel like you want to die do something that gets your mind off yourself.
The only thing I can think of to make myself feel better is a commitment to not buying anything new except the essentials in life. We have to save money, money is frightening me and depressing me, I think, or else I am going down and have the illusion that there is some reason for it. Truth may just be that I'm just sick in the head and I'm grasping at reasons why. Depression and the season change does come to mind.
I am going down. I want to cry but nothing comes. I wouldn't even know what I was crying about. There really is no crisis in my life. There really is no real reason to cry. My husband loves me. The book project is a lark, supposed to be fun. If it is a flop, who cares? We can just publish it electronically on Amazon and make it available to kindle readers. We can say whatever we want to say, critics be damned.
I've turned my back on a years worth of writing to work on this project with my husband. Maybe this sense that I'm lost and wandering is feeding into my despair. But my own book project was not going as I liked it. I spent one year writing the happenings in one day of my main character's life. I don't know what is good or bad, interesting or not, compelling or boring, pertinent or drift. I just don't know the quality of my mind. There is a horrible pitfall to being a writer,- the isolation.
I have to go hug my husband. He is writing on the book and I have said nothing to encourage him, I have only shown dissatisfaction of his work today. He tried giving me more chocolates, from some secret stash. I ate two and handed the rest back to him saying that I am making myself sick with sugar. He gave me those chocolates in an attempt to apologize for his writing that I rejected and mend fences. He shouldn't have to apologize for his writing. Or maybe he gave me the chocolates to cheer me up. He can tell that there is something wrong with me today. I wonder if my aura is doing weird things.
I would rather eat a banana. Much healthier.
Would a banana save me from despair? A banana and a cup of tea.
There is nothing wrong with my life. I know I am blessed. I'm just particularly unbalanced at this moment.
Tuesday, October 19, 2010
Christian or Buddhist
Woke up this morning saying "Karen, Karen!" and hiding my face in the pillow. So ashamed of how things went last night at church. I spoke up and just felt like an idiot after. So went home and ate to much and had a stomach ache this morning. Yes, I tried to drown my sorrows in potato tater tots and ketchup.
I have been reading the most Buddhist book I've ever read, "LovingKindness" by Sharon Salzberg. Oh, I've read a book by a Buddhist monk, and a Buddhist nun, but this one really sucked me in the most. In the introduction is a kind of prose poem. As I was reading the prose poem I thought to myself, "This author is fantastic! So wise!" and then I turned the page and found out that everything I was reading was attributed to Buddha. I don't read Jesus quotes and get the same passionate response.
Part of my basic problem in life is that I don't like myself very much. I didn't like myself before the illness, and now that I've got schizophrenia, there seems to be so much more instances of flaws, lacks, failures and general mediocrity. In the Buddhist book the author starts out with meditation exercises that generate self-love. Exactly what I need. It seems pretty clear to me that in order to practice Buddhism you have to meditate. And to practice Christianity you have to read the Bible and pray. I don't do either. But I need to start doing something. I've pledged a tithe till the end of the year to the Church, so every week, I'm paying money to the Church. Makes me want to stick with the Church for a little longer.
Last night we learned about the fallacy of the virgin birth. Yes, it was pretty much mocked by my progressive Congregationalist church. It is a myth that I've painted two paintings about and that I can't seem to ever get behind positively. Both paintings, inexplicably, are full of horror at the immaculate conception. In order to understand the bible you need to know so much history, and meanings of words in Greek, and general knowledge to understand meanings, not the surface meanings but what people actually thought about the scriptures as they were historically writing them. I see Christianity distorting so much and turning so many myths into concrete facts that I'm turned off. I'm a scientist's daughter. I know scholarly research illuminates. But my sect of Christianity is so progressive that the message I'm getting is disbelieve what you read, or else, read it with a higher knowledge of its historical source. Buddhism seems to be about transforming the mind - you are your thoughts. And so much of my thinking is garbage. I know it has to do with being emotionally abused as a kid. I almost never think about my childhood but it is producing self hating self doubting thoughts in myself that I would prefer to get rid of. Buddhism promises to get rid of the thought junk. Very appealing to me.
I like the myths and parables of the Buddhist religion. To me, they teach more. There is, after reading them, more of an "ah, ha" moment of thought. As a kid my first reaction to my children's bible of Old Testament stories was "God is so cruel". I couldn't believe all the wanton killing. Ultimately of course there was the sacrifice of Jesus. Never could wrap my mind around the need to to do that. It seemed a tragedy, nothing more. Never believed he rose from the dead. Now, according to my church, you don't need to believe that. Christian education is a big myth buster. All these myths to prove the glory, to prove that this is what you should be impressed by. Jesus impresses me. I don't need the magic. I don't need to eat his body and drink his blood to honor him and make him part of my own body. Communion. It doesn't strike that much of a chord with me. But when I take it, I try to feel its holiness. I really do try.
Yesterday my husband and I were going for a walk. We had discovered, mid way through the walk, that I had done something with my computer that was very bad for the computer. The question my husband and I asked ourselves, as we walked, was would the computer work when we got home or would its insides be fried? This was a depressing thought. I was unhappy and probably looking down at the ground. Then my husband said, "Look at the clouds, they are purple and pink and orange" and I looked and saw that they were beautiful. Then my husband said, "Look at that tree. It has been cut funny to avoid the power lines, but isn't it a beautiful tree?" The leaves on it had all turned red and it was very tall. I wondered to myself which of the many trees on the street were the most beautiful, and if indeed my husband had chosen the best. Couldn't agree with him, but it got me looking and comparing the majesty of nature.
So that night at church in our education class I described what had happened and said, "I think my husband's inner divinity showed itself, and then transferred itself to me. Humanity and divinity is really on a continuum. I'm not saying that my husband is divine, but I think that something divine moved through him, allowing us both to lift our spirits and appreciate the nature that surrounded us and to forget our troubles." And nobody commented on what I said. It sank like a lead weight. Are you not supposed to think this way religiously in my church? Was what I was pointing out too mundane? Nobody sees God in sunsets and trees? I would have thought that that was a basic place to find God.
Last week I woke one morning and had a thought in my head. I woke angry. My father invited my brother for an all expense paid trip to California to see my sister and her new born baby. Just another example of how my father discounts me from family gatherings. Perhaps he thought it would have been too much work to bring a mentally ill daughter with him, even though I have flown out to my sister's and back by myself successfully. I guess, in the end, it wouldn't have been as much fun with me. He knew that if I went he would have had to witness mental illness symptoms, and he doesn't like seeing anything irregular. Now I have a choice. Do I let my anger influence my behavior and skip Thanksgiving with my father, to prove a point? Do I write a card to show him how he makes me feel by omitting me and favoring my brother? This is not the first time that he has invited my brother and sister to a gathering and not invited me.
So I was feelings these feelings and reading my Buddhist book and suddenly, quietly, something died. The anger just melted away. I was very quiet inside and accepting. I can't change my father or ask him to be burdened by a mentally ill daughter, a burden that he seems to want to avoid. Why indeed, I asked myself, do I even bother to try to change him? I have my husband who loves me and wishes to be with me. Not everyone can be as nurturing and accepting as my husband. My father would have been satisfied if I had been locked up in a mental institution forever. My father who screamed at me over the phone that I must never, ever call him and tell him that I feel suicidal. And to think that there is the fundamental truth that I love my father and look forward to seeing him at Thanksgiving. If I concentrate on how much I love my father all the bad feelings, all the past goes away and I find myself in the present. The way my father has treated me is wrong, but I don't need to punish him. It is tempting to punish him but I know that that path will probably not end in his remorse, it will end in his anger. Punishment results in retaliatory punishment, it just goes on and on. I'm my father's daughter, but I've stopped being like him a long time ago. At least I hope so.
If I meditate, and learn more about Buddhism, I will be less and less like my father. This is a good thing. The more I go to Christian education the less I understand Christianity. This is a puzzling thing. Now I am afraid to read the Bible because I don't know what is straight talk and what is myth and history and anti Roman sentiment. I am game to believe in myth, but it helps when the myth is prefaced with the general knowledge that what is being stated is myth. I don't know if I'm sophisticated enough to learn from the myth of the virgin birth. Christian education just deflated Christmas. This is what my minister felt too, and it bothered her mightily. She said she really enjoyed Christmas and didn't want to stop enjoying Christmas.
It just seems like you have to fake more being a Christian and fake less being Buddhist. Pray or meditate. It seems like I have to do something. I don't want to be self-destructive and self-lacerating. Religion should help me with this burden. I don't seem to be that swayed by the promise that a Christian God loves me. I'm too far out in the wilderness for this sentiment to reach me.
I'm going to continue reading Buddhist books and going to Church. I feel like a fraud. But I'm searching. It really is o.k. to be lost. I'll permit myself the luxury of feeling totally confused and not make that a subject of self critique. When I say I lack faith, I don't mean that I don't feel that there is something out there that is larger than me, because I do. I believe in my own attachment to the divine. I just don't know yet how I'm going to define this connection, or what steps I will take to make it stronger.
Saturday, September 25, 2010
Two Schizophrenics Talk
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
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
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
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.
Sunday, August 22, 2010
Good Heath
He was on his belt's last notch and he was complaining to me that he has to keep on pulling up his pants at work. So I went to J.C. Penny's and looked for a new belt in a smaller size. The store happened to have a belt sale on, buy one get a second at 50% off. It was fun trying to find something for my husband that was classical, and that was stylish. At the check out it occurred to me that my taste may not be my husband's taste, so I asked the salesman if a belt could be returned for an exchange after the sale ended. He promised me that they are very flexible, and that the sale price would be honored. But my worry seemed to be for nothing because my husband has become attached to the stylish belt, braided straps of narrow brown leather, and he wears it all the time. So I scored! Good little wife.
I too have had some benefits from swimming. Nothing so dramatic as my husband's change in overall form, but I noticed that my jeans are looser. This is a good development since I was on the verge of needing to trade up to a larger size. Now my belly no longer hangs over the top of the jeans and they can be worn in comfort. There is nothing more irritating than wearing tight jeans, even if the jean material has a little bit of stretch to it. I'm still not back to the low weight I managed to maintain for about a year, but I know that if I keep swimming I will continue to loose weight and more. My goal is still to be a size 10, and right now I'm a size 14. If I can drop two more pants sizes (woman's sizes are measured by twos) I think I will feel really happy with my looks. I remember when I was a size 4, but that was when I was in my twenties and I wasn't taking medication. Anti-psychotic medication increases my hunger, slows my metabolism, and in general, lowers my energy. I no longer care to be super skinny, just an average citizen is the favorite dream. Having a serious mental illness and living a life that is as close to normal is what I'm pushing for. I remember when I was last a size 10. I was thirty years old. Now I'm forty-two. I'm not going to age, and change size and shape without a fight. I haven't given up on myself.
I have complimented my husband several times on how good his trim and firm body looks in clothes. Poor man, the compliments went to his head. One afternoon last week he changed out of his work clothes and I noticed that when he came out of the bedroom he did not button his shirt the way he usually buttons it. He was so proud of his chest that he left a great deal of his shirt open, better to show off and expose his chest. My husband is 52 years old and he was obviously feeling like a young man. I held my tongue. We were only going swimming. Perhaps I thought the unbuttoned shirt was a one time aberration. But after swimming again, he had to change into his shirt and again, there was that low button left undone. His shirt gaped. After swimming the next thing on our to do list was to go to the grocery store and I'm afraid I wasn't comfortable with my husband's sexy new look. I said to him, "Remember when I tried on a bunch of dresses, paraded back and forth in front of you, and you said that some had skirts that were too short for my age? And so I learned that I should not wear dresses with short skirts. Well, unbuttoning your shirt that low is inappropriate for your age. Sorry to take away the fun, but I'm not comfortable with the look. Button up."
So we are a conservative couple. I do not wear skirts above my knee, and my husband does not leave too many buttons undone on his shirts. Perhaps there is dignity in this, perhaps there is only sadness in this. I like to think that we are both keeping the other realistic and in step with society's norms. Where one indulges in fantasy, the other is the voice of reason. What is perhaps most fortunate is that our sensibilities are similar. We could be the wacky, eccentric, outrageous couple that likes to draw attention to ourselves with immodest dress or hair - at least we would be a couple who has the same point of view. He could be a biker dude and I could be a biker chick, both saying to hell with growing old and to hell with convention. But I think we are careful with our eccentricities, not to push the envelope too far. I wear bold jewelry and he wears a cowboy hat. Our deviations from the norm are there, if you look closely, but they are nothing to get too excited about. We are people who try to be approachable and to illicit the least amount of awkwardness and fear in strangers. When we were young we both experimented with flamboyance. I was punk, shaving my head, and he had a feather earring and long hair flowing down his back. Amazingly, neither one of us ever got a tattoo. I think we are still both open to the idea of getting a tattoo. Problem is we don't have the extra money to get a magnificent tattoo. It simply isn't high on our list of priorities. Right now our big expense and big extravagance is the swimming membership. It dips into our savings, our budget doesn't have room for it. But instinctively, we both feel swimming is essential to keeping healthy. And good health is similar to feeling wealthy.
I confess to a competitive streak. When we go swimming, we both are very pleased with ourselves when persons arrive in the pool, swim, and then leave, all within the time that we are still swimming. What this simply means is our workout is harder than their workout! It is a little conceit. But we both feel smug in outdoing the other guy. Last time I swam I swam for 50 minutes. My husband swims faster than me, his strokes are more powerful, so he naturally swam more laps than me. He counts his laps, and often, my laps too. I prefer to swim and let my mind wander. I know that I'm doing my best, so it doesn't matter to me how many laps I swim, all that matters is the time I put in. I shoot for 40 minutes of continuous laps. I always give myself the option of stopping after that amount of time.
The pool has an outdoor hot tub. It is an incredible luxury after a swim (when you are almost too tired to walk and feeling shaky on your legs) to get into the empty hot tub and have a random conversation. Last Friday we talked about the history and politics of Africa. While my husband isn't a news junkie, somehow he manages to keep a pulse on what happens in world events. And he has lived almost ten years longer than me, so events that I was too young to know about were part of his growing up. Traditionally Friday night is date night, and it seems that the date which my husband and I favor is going swimming, conversation in the hot tub, and then burritos at Taco Bell. It all sounds so innocent and wholesome, and it is. Our bodies glow with a deep relaxation that comes after exercise. Then, instead of cooking dinner, we eat out. But we don't have much money so we can't go to a nice restaurant. I think dinner cost about $6.50 last Friday. A plain bean burrito for me (nothing really unhealthy about it), a supreme meat burrito with extra sour cream for my husband (he eats more for taste than for nutrition) and one large diet soda that we share between the two of us. While we drove to the pool I looked out the window of the car and saw all the people gathered at bars and fancy restaurants or at the movie theater. Friday night comes and you know that somehow you want to celebrate. One of the reasons we like going to the pool Friday night is that it is practically empty. This says to me that somehow we are marching to the sound of a different drummer.
We are both extraordinarily content with our marriage.
Wednesday, July 28, 2010
Writer's Workshop
We meet in a stain glass artist's home. It is eclectically decorated with many healthy plants and elegant, mis-matched furniture. They don't have much money but they have great taste. Interesting food is always provided at break time. Last night it was strawberry smoothies, watermelon slices, popcorn, and some kind of raw root with spices on it. I did not eat the root. It seemed too exotic. Next week we are meeting an hour earlier to share desserts and conversation. I am going to have to cook something. It will be our last workshop for the summer. The workshop begins again in the fall. I won't be going back.
Last night I gave the leader of the group, Jan, a ten page sample of my writing. She will correct it and offer both positive and negative criticism. It is a scene from my book. In the workshop all participants are under the obligation to only say positive things about one another's writing. But in the private submission the teacher will teach. I hope I learn something. I hope I'm not torn to shreds. I really tried my best. But I don't know what my best is. Deep down, my desire is to impress the teacher. I am prepared for my book not to succeed, but part of me naturally wishes very much for it to be a success.
I haven't been working that much lately on my book. I've had to go to Connecticut to help with my mother's rooming house once a week and do other sorts of obligations. Days that I have my writing workshop I don't write in the morning because I'm saving my creativity for the group. I can't afford exhausting myself creatively and then have nothing left. I must take my performances for this group pretty seriously. And then days that I have therapy I find that I am too wound up over therapy to write. My sessions anyway are usually scheduled for prime writing time. I have had the experience of exhausting myself writing and then arriving at my therapist's weak and sick with my mental illness. The illness always hits me hard after two or more hours of concentration. It feels nasty to try to match wits with the therapist when your brain is toothless. I like to arrive at my therapist's, like I arrive at the writer's workshop, in prime condition.
Recently I read Steven King's book "On Writing" and he emphasizes that he writes every day, no exceptions. I re-affirmed my commitment to writing after reading his book. My mother is coming home to Connecticut today, on a plane from California. My sister just had a little baby boy and my mother was there to help out. So now she can take care of her business. And the workshop ends next week. One of the ways I've been sneaking in writing is that I haven't been going to church. In fact, Sunday mornings my husband and I have been going swimming, and then I come home and write. Before we started swimming I would just write. Church is not as important to me as writing. And too, I like going swimming better than going to church. If I start having problems with depression then I will return to the church. But I'm afraid that I haven't formed any tight friendships there. I have genuine affection for some of the little old ladies who are bright in spirit. And these retired ladies are very kind to me. They understand that I'm a little different and a little fragile, but they make me feel really comfortable. The women my own age might smile at me, but we never have conversations. Part of this is my own fault, I don't know what to say to them. They are busy raising children, and most of them work. I just can't seem to make friends. I really am shy. Like my father. Under stress, I can make conversation just fine, but it takes effort. Conversation does not come naturally to me.
Tomorrow is the first day that I will return to the book in a while. I'm eager, but I'm not expecting too much. I have to become re-acquainted with the flow of the scene. It is the day after when I probably will be happiest with my writing. I see ahead of me five days of uninterrupted writing. It is a bounty of free time, and I'm so excited to see how far ahead I can push the story. Tonight I'm going to re-read my rough draft and get set in my mind the direction and territory I'm supposed to cover in this chapter.
Last night at the workshop two women declined to read their writing because what they had written was so personal, or painful, that they couldn't share it. I always force myself to read, even though, afterword I say to myself, "My God, what have you done?" I share the most private thoughts and experiences. I have no limits. All shame, all pain, all truth. Sometimes people laugh at what I've written. The laughter always surprises me. I don't try to be funny. Once, when I was in my early twenties, an older woman who read my writing said that I had "black humor". In this workshop they call it dry wit. I will admit, sometimes I poke fun at my husband. Or what is really funny is not what he does, but the relationship between us. I've been in the workshop before, but then I usually wrote about my father, now I notice that I write the most about my husband. I suppose this is a good transition. Living in the now instead of the past.
I do have the option of staying in this workshop when it starts again in September. I might need the comradery of artistic people. Some of the people are writing books, but none with the passion or commitment of my own writing. Last night Jan told us a story about a pupil who surpassed her. This woman was writing fiction in the workshops and Jan said she amazed everyone who listened to her. Eventually two major publishing houses got into a bidding war over her first novel and she sold it for a quarter of a million dollars. When she called Jan to tell her, Jan started crying with happiness. The way Jan told the story, it never entered her mind to be envious. Later, when Jan was preparing a book proposal of her own she asked this woman for her help.
I don't have anyone to help me write my book. I show no one (except my husband) my finished chapter's after I've written them. Once or twice I've read my therapist my writing, but he called me a diamond in the rough and I decided that I don't want to hear that. His daughter's a writer, just starting college, and he's over the moon over her. And he writes himself. He's working on a book of affirmations. I judge that what I'm writing about, mental illness, is too close to the field that my therapist's in. He isn't impartial. I don't even know if he's a good writer. Bottom line, I don't trust him. Maybe I should give him another chance. Maybe I should read to him what I've just submitted to Jan. It's a little bit of polished writing. But its subject matter is a staff person in a psychiatric hospital and I know that he's worked in a psychiatric hospital. My view point is very paranoid. He won't like a person in his line of work being bashed. This staff person turns out to be somewhat of a pervert.
I feel like I'm like King Midas. Except everything my mind touches turns to dirt instead of gold. My book is so dark I can't even explain it to people. Mental illness is hellish enough to make you want to kill yourself is the theme of my book. Nobody actually dies, but oh, they try.
After hearing Jan's story of a pupil's success I think that staying in the workshop might be good for me, even though I feel combative while I'm with other writers, and even though it takes up a chunk of my time. I could write mornings of the workshop, and then let the quality of my evening writing deteriorate. I think at least something would flow from my mind. Of course, the illness could be stronger than the creativity. I might not be in a position to amaze anymore. All that would be left would be a fellowship of writers, whose company, I would return to week after week. We are timed when we write, we have anywhere from 10 minutes to 35 minutes to write. I imagine sitting down and having an empty head. This is what I fear the most and it is not an unreasonable fear.
Do I have the courage, to fail in a writing exercise? To return to the workshop group after 20 minutes of writing with something that is not my best? Or to say, "I could think of nothing?" And just sit and listen to what other people have written? The time constraints pushes me to take some feature of my life and to write about it. I write from real life, all the time in group, and almost never fictionalize. It takes so much energy to invent, and inventing is not what come easiest to me. Revealing is what comes easiest. Telling what is true, and has really happened. I think because my book forces me to invent, I have a hard time during my morning sessions.
I don't feel like a creative person, no matter what I produce. And the fact that when I try to produce, I am able to produce doesn't quite impress me. I still don't feel like a creative person. Good God, Steven King is in his own little paradise when he writes! This keeps him coming back for more. I don't know what drives me. But it hurts to write. Except, perhaps, when I am in the flow. But I can only be in the flow for a short time, because of my mental illness.
There are grapes of goodness dangling over my head and I can't reach them.
Monday, July 19, 2010
A Violent Love
that we must suffer, suffer into truth.
We cannot sleep, and drop by drop at the heart
the pain of pain remembered comes again,
and we resist, but ripeness comes as well,
From the gods enthroned on the awesome rowing-bench
there comes a violent love.
What strikes me is the "pain of pain remembered" as though we are made of finer stuff than we can know, and that the REAL person is arrived at through a process, perhaps of pain, but that we remember ourselves into being. We existed before birth, we will exist after death. And the state in which we exist out of life, in a place beyond life, is beautiful, healthy, and good. Immortal we are more than we are when we are mortal. As mortals we are always striving to remember our immortal state.
Ever have that experience of doing something, and the nagging doubt that you did it wrong, and that you knew better? There is a center to everyone that is good and virtuous and it seems that we spend our entire lives trying to live closer and closer to this center. Well, not perhaps everyone. Some people's voyages, in an unexamined life takes them further and further away from the center to make foul mistakes, to be a burden in this world to others, a fountain of sorrow and hurt.
Today I went to the bank and next to me was an old man giving the bank teller a very hard time. I've had many nice transactions with this bank teller and I know that he is a sweet young man. But the old man was not influenced by the courtesy of the baby-faced bank teller, instead he mocked him, he hounded him and he acted like an cantankerous egoist who was in a rush, and had better, more important places to be. As I walked away I imaged taking the old man's arm and saying to him, "what is the matter with you, why are you so upset?" I just got the feeling that the bank transaction, that was so distasteful to the old man, was just a symptom of a life lived on the verge of misery. Nobody could be as mean as he was being and be happy.
Another favorite part of the quote I discovered (probably a fragment of something much longer) is the phrase "violent love". The God I know has given me a mind that is present and robust at times but at times is very fatigued and distant. I am crippled. I am wounded. This is no different from saying I am mentally ill. It was of great interest to me that in this book I'm reading (Karen Armstrong's "The Case for God") there was a reference to the Greek divine craftsman, Hephaestus, who was a cripple. Their highest artist, the artist who all artists saw as a prototype, was a cripple. I find this intriguing. In a book I read about 15 years ago I remember the thesis statement that most creative people are in good mental health. But the Greeks recognized that something in the artistic mind is often flawed, for their Gods were after all manifestations of the forces of the unconscious mind.
One year several years ago, while my husband and I were vacationing in Maine, we happened to be at a restaurant when a famous painter and his entourage arrived. The painter was Andrew Wyeth's son, Jamie Wyeth and he was dressed in a tuxedo jacket. How he was dressed was a little eccentric, but being an artist who was close friends with the likes of the Kennedys (he painted president Kennedy when he was only 17) and Andy Warhol, he is the sort who can make up rules about style and life as he chooses. I asked my husband what he saw in the man's aura. "It is bright and very large" my husband said "but it has cracks in it". Having a cracked aura means that there is something slightly wrong with your brain. We haven't quite defined what the crack means (places where the light of the aura is absent) but it is associated with some type of dysfunction. When I am very sick with my mental illness cracks will appear in my aura, but happily, this is not the normal state for me. It astonished me that someone with so much force of personality (the man exudes this, I watched as he shook hands with several people he already knew at the restaurant) and such enormous creative talent could be flawed. But so be it, his aura was flawed. He is unlike most people who you will meet walking down the street who do not have cracked auras. To my mind Jamie Wyeth, like his father, is the term artist as one would define artist. A great man, a great talent. But to someone who is sensitive to the condition of the soul, like my husband, that night a hurt was revealed. Jamie has a slight crippling of the mind.
I think creative types are special recipients for God's violent love. The term to my sensitivity is almost a contradiction, like Shakespeare's oxymoron "angelic fiend". How does one love violently? It is most certainly benevolence mixed with pain. It is tonic that will do you good and cure your ills but tastes terrible. It certainly answers the question of why bad things happen to good people, or why there must be natural and unnatural disasters, like the earthquake in Haiti and the poisoning of the Gulf ocean by the BP oil spill. God loves with a slap and a hug. Wake up and be comforted.
That the Christian messiah Jesus had to die at a young age on the cross, a horribly painful death, is an example of God's violent love. "Life isn't fair", is a statement that some fundamentalist Christians would discourage you from believing. "there must be a cause" they say. They name the cause the devil or some sin of mankind, but God's hand acts in only clear cut ways, no ambivalence. There is vengeance and there is forgiveness. God turns away from man, or God rewards with abundance. Or, as it seems in the church I attend, God's love is steadfast and perfect, it is only you who do the turning away from or turning toward.
It was a pagan who envisioned our condition on earth as a case of having been loved violently. And it was a pagan who saw that a person is like an onion, with layers needed to be peeled away to discover what was always present.
I feel that in me is a greater person that I have yet to meet. The longer I live, I pray, the more I'll meet of her. I don't know yet how to incorporate this quote into my life as a Christian, but I must do so, because the quote seems so true to my experience.
I cannot believe that mental illness does not carry with it meaning and purpose. Or at least, in order to live with it, you must give it some sort of value which is not negative.