Wednesday, March 31, 2010

Joyce and Henry

My husband works with a woman named Joyce. She is an ex-hippie, has a great sense of humor, and is caretaker for both a teenage granddaughter and a husband with advanced Alzheimer's. Joyce is 63, and I met her husband Henry at a party put on my husband's company last year. Henry is mostly a vacant shell of a man. Joyce said that he was having a "good day".

Caring for Henry is exasperating, stressful, expensive, and a deed of the heart. A doctor told Joyce that Henry should be "in a home" and Joyce rebelled strongly at this advice. Henry is also a diabetic and has to be watched constantly so that he doesn't eat something that will send him into a coma. He has been in a diabetic coma several times and has had heart attacks where his heart flat-lined, but Joyce always demands that he be resuscitated. Her grown children are puzzled, why doesn't Joyce let Henry go? In their home every door leading to the outside has a funny alarm on it so that Henry won't wander. You step on a pad as you leave, and then punch a code into the alarm to switch it off. When Henry steps on the pad, he doesn't understand about punching in the code, so automatically, the alarm goes off. The alarm going off is sometimes what wakes Joyce in the middle of the night.

Joyce is not quite my husband's boss but close. I know that my husband and Joyce share a bond of experience of having a loved one who is disabled. They swap stories about their spouse. My husband is always open to hearing about Henry, and Joyce has learned a lot about me. I think that these two people know that they are sometimes going to the limit for the person they love, and that maybe, others wouldn't understand it.

Neither Henry nor myself are abusive toward their spouse (although I can be irritated mightily - and I will occasionally say a cutting, insensitive thing). What we both provide, in vastly different ways, is companionship. I don't know the difference between co-dependency and love, except perhaps, that love somehow makes you feel fulfilled and heroic and co-dependency makes you feel like a victim.

There is also a man at work that my husband has less interaction with then Joyce. Always this man, to my husband's special eyes, has had a damaged aura. The light around his head was weak and had cracks or holes in it. My husband judged, by the aura, that this man wasn't happy.

Than a strange thing happened. This man's wife got sick. It wasn't a passing sickness, and I don't know if it was life threatening, but it was disabling. To my husband's astonishment, the man's aura changed in a positive way. The light grew stronger and the holes and cracks disappeared. Here he is with a crisis on his hands, which would lead to depression and despair in most people, but his aura was showing signs of health and healing! My husband had to conclude that this man was in a new position of taking care of his wife, and that this gave his life meaning and purpose that lifted him up. He was needed by his wife like never before and this was, for his soul (the aura is the light of the soul) a good thing. Perhaps, through his wife's illness, he grew closer to her. Perhaps he felt more like an important man being the primary breadwinner. The aura never tells you why, it only tells you the condition of the person at the moment. All my husband knows for certain, is that around the time this man's wife got sick, the health of his soul improved.

My husband says that I'm good for his Karma. What he means is that he feels that after he dies he will stand before his God (a female God for him) and be judged by what he has done while he was living. Until he met me he made many mistakes in life and felt that should he be judged, he would fair poorly. He would be a disappointment in his God's eyes. But since he met me, and started to care for me, he hasn't made the same kind of mistakes and he believes that his relationship to me will give him bonus points with his God. He is very aware that I am financially dependent upon him, and perhaps emotionally as well, and he knows that he is responsible for another person's life. It must be a little bit like what a father feels toward his young child. He knows that the child's health and well-being rests in his arms. And yes, I believe some father's or mother's resent their children for this dependency, while others only rejoice. I bet that in many therapy sessions a parent has said, "I wish I never had kids". But I know that when my husband's daughter was born (she was an unplanned pregnancy - sperm somehow got past his girlfriend's diaphram) my husband's mind turned inside out, because suddenly, there was someone in the world who was more important to himself than himself. My husband believes that this shift in world view was an important step in personal growth. He felt like he would do anything to protect and be with his daughter, and to be so selfless made him feel like a better man.

I have an unhappy task to do this Easter day. My family will be getting together and I will be seeing my brother. My brother has asked that I return a painting that I bought from him. It is a painting of two red apples on a mysterious black swing. It is the best painting he ever made and he stopped painting after he made it. Years ago he named an outrageous sum of money for it, and as I was newly divorced with a flush bank account, and I paid what he asked. But now he told me in an email that he feels like it is "a lost child" to him and he has offered me the choice of three paintings of his in return for this one, special painting.

I'm really torn because I love this painting, but I love my brother too. I find that I cannot deny him his request. He doesn't know it, but when I made a will, I specifically willed this painting back to him. In my will there were only four items that I cared where they went, and this painting was one of them. I made certain that after my death the painting would be placed in the hands that love it the most.

I am selfish with owning the painting and enjoy looking at it, I enjoy knowing that I own a treasure, but I love my brother and I cannot say no to him. In this case, love hurts a little. I wonder, with amusement, if everyone in the family is in thrall to my brother and find that they can't say no to him. He is the golden child. And yet, in every way, he seems perfectly ordinary.

I'm glad that after I finish painting a painting, I am done with it, and send it out into the world to have merry little adventures!

Monday, March 29, 2010

Taking on a Burden

I read this on Pam Wagner's blog;

I received this comment a few days ago, and I wonder if anyone — somebody, please? — has a response for the person who wrote it. This wrenching question seems to me to embody one of the most painful and awful choices that siblings and even parents of people with severe mental illness may sometimes feel they have to make in order to save their own lives and their own sanity….Or not. What do people think?

“I have a schizophrenic brother, he became ill at 27,
and it was a terrible time. My brother is now 54 years old, my parents have long since died. I have no
relatives that care about him or me. I have to tell
someone I don’t know where my brother is, he was in a
group home and was told he could no longer live there
this home was horrifying. I tried all my life to help
my brother, I had no life, I finally just had to let
him go, I pray god is watching over him. Do you think
this makes me a horrible person?

This is what I wrote;

The person writing to Pam described themselves as having “no life at all”. This sounds depressing and sad. They sound like the quality of their life is so bad, that they couldn’t take on the burden of seeing to the quality of their brother’s life.

I see in my family that my sister is weakened by a slight touch of the schizoaffective disorder that I have, and perhaps my brother as well. But I am also confident that they would not desert me, as fragile as they might be. This gives me strength and confidence to live, because I am dependent on the kindness of others, be it the government, or my husband, or my parents, or my siblings. I cannot provide a roof over my head or feed myself. I cannot work for a living. If it weren’t for charity from the people who love me, I would be homeless.

I don’t think this person is horrible, I think that they are in pain, and they have burdened themselves with even more pain by turning their back on their brother. One of the ways to have a fulfilling life is to do charity, is to be giving, and to go the distance for someone other than yourself. How proud this person would be if they had saved their brother! Suddenly, they would indeed “have a life”. They would have been a hero.

This writer has traded their brother for a large helping of guilt. I don’t intend to increase or decrease the feeling of that guilt. But I know that if I had my brother’s life in my hands, I would not trust him to God, I would do what ever I could to tend to his welfare. My meager resources would be used, my emotions might be stretched, my patience would be tested, and yes, the life of another human being can be a heavy load, but I would take that load and offer if it were the only thing I had, the living room sofa! I know that social services would come to my rescue, although it may take a long time for them to be mobilized. I know a schizophrenic in my area that had to wait two years for a government funded apartment. But the apartment eventually came, and now he is safe and secure.

Doing what is right can be hard. Following your heart can lead you into a wilderness that is unforeseen and perhaps, terrifying. But I know my heart, and it would never tell me to turn my back on either my brother or sister. In fantasizing about helping them, I can only believe the final result would be satisfaction. And knowledge that the heart has won.

Most of what people wrote to respond said things that absolved the writer of their responsibility for the brother. I saw a refrain to say nothing negative to the writer. I guess nobody wanted to kick the dog when it was down.

I must confess, I have both been the object of humbling charity by a poor black family, and homeless myself. Yes, twice after the onset of my illness I was kicked out of my mother's home because my behavior "made her feel crazy". She said, "go live in the road like a pig". She absolutely felt like she was saving herself by sending me out on the street. I know what it is like for someone to say "you threaten my sanity".

The first time this happened I had a car and I went to a park and slept in my car. I was worried about the police, I couldn't sleep in the uncomfortable backseat of the car, and there was no bathroom. My sister (who was away in college) found out about this and called a friend, who had an ex-boyfriend, who had a one room studio apartment. He let a total stranger come in and sleep on his floor. He had virtually no furniture, being very poor himself. He was a cashier at a local Wendy's fast food restaurant.

It was such a relief to sleep indoors, on that floor. Oh, I was so grateful! This young man did not care that I was crazy. He was kind to me. He said that the psychosis I was experiencing was very similar to what he experienced when he dropped acid. He was in awe that I needed no chemicals to have an altered view of reality. On the day that the town left big furniture out to be picked up by the garbageman, we went around and picked up the thrown out furniture for ourselves. Then I had an old sofa to sleep on. He never asked me for rent, he never made a sexual move on me, and eventually I was reconciled with my mother and I went back to living with her.

The second time my mother threw me out I ended up in the local YWCA in a room that was funded specifically for homeless people. At first I had a roommate who was fanatically reading the bible (she was a nice lady) but eventually, because I was taking classes in college, the YWCA gave me a room all of my own. I needed that room to keep my computer in and to do my homework in. It was hard being in the Y because I was white and shy and most of the girls were Black and Hispanic and very street wise. They talked all the time, were very social and dramatic, but I said little or nothing. I remember cooking food and someone else who was using the stove saying very loudly, "I don't want no white girl breathing on my food". It was reverse racism. I can remember being shocked. But then I did this a few days later. I had been given the gift of some cookies that were very fancy, they were dipped in chocolate. I offered her, and the other girls, some of the cookies. They were so tempting, she took several. And as she did, she looked at me like I was a wild animal and would claw her hand that held the cookies. But I thought, "score one for race relations!"

The kindness that the poor black family did for me sticks in my memory as well. I was a senior in high school and my father had custody of me. This was before the onset of my illness. The relationship I had with my father was very unhappy, he had a temper and was frequently angry at me. It was very stressful living with him. My friend from school, a black girl who was very sweet, offered me an out to come live with her family. So as not to injure my father's pride, we arrived at a "story" that explained my living with her other than trying to escape from my father. I do remember seeing a therapist at the time, and the therapist told me that she would have gone to the state to have me removed from my father's home, except that I was leaving for college in a short time, it was merely a matter of a few months and I would be "free".

The story I told my father was mostly true. My black friend, whose name was Betty, had a father who had turned schizophrenic while she was in high school. He was being released from the hospital but had a court order to stay away from the family home. The hospital he was being released from was for the criminally insane. He had tried to kill his wife, and as she had eluded him, he satisfied himself with killing the family dog with a kitchen knife. Betty was afraid to sleep in her home for fear of her father coming home, and, here is the story we told my father "I was to sleep in her room and protect her". I laugh as I write this, but my father bought it.

Betty's mother gave me the largest bedroom in the humble home. Betty slept with her sister, the brother slept in the basement, and the mother slept in a tiny room off of the kitchen. As I realize now, but not then, the mother had been using the large bedroom but she emptied it of her clothing and moved into the small room so that I could have that large room.

There was another thing that Betty's mother did for me that was so kind. She worked as a nurse, an odd shift, maybe two shifts, and was asleep when I came home most evenings from my part-time job. All I can remember her doing is working and sleeping. But always, on the stove in the evening was pot with something hot simmering in it for me to eat. Everyone else had eaten, I can remember late at night the house being so quiet, but there it was on the stove, food just for me.

My father eventually gave me money to give to Betty's mother. I can remember her protesting, not wanting to take it. I don't know whether or not I finally convinced her to take it. I hope she did.

My husband has a story of an angel of mercy. He had had a nervous breakdown and was living in a tent in the woods. He had with him the family dog. It was a big dog, and when it was left alone it had trouble with anxiety. One day my husband returned to his tent in the woods when he found that his dog had, in a fit of anxiety, shredded the fabric of his tent and his sleeping bag. It was already a low point in my husband's life, he had several cans of beans left to eat and no money.

But a friend of his loaned him $400. This was enough to buy a used camper and put a down payment on a spot in a campsite. Suddenly he had the luxury of a roof over his head and a place where he could live free from fear of discovery, and free from worry that the police would move or arrest him. The friend who loaned him the money also got him a part-time job at a wealthy lady's home doing garden work and housework for her. My husband's mind was really weak and all he could do was the part-time work, it took everything out of him. But eventually his mind healed and he was able to go on and get a full-time job at a social clubhouse for the mentally ill as grounds keeper and maintenance man. That was where he met me.

My husband and I am unique because we both have been saved from homelessness. I have to say that once you experience homelessness your view point changes. Suddenly having a car that runs, or an apartment to call your own feels like the sweetest blessing. Once everything has been taken away from you, you always in the back of your mind know that catastrophe can strike, and the street isn't so far away.

And the people who do live on the street? Well, you have a bit more compassion for them. My husband likes to talk to the homeless men who hang out at our local library. He remembers their names and calls them by their names.

I see that I made a mistake in reading the original version of the letter. The writer says that they "had no life" in reference to how much the brother was bleeding them dry, assuming, emotionally. I can't understand how helping a mentally ill person can reduce you to "having no life". I would have to say that if drugs were involved, that would harden my heart quite a bit, but there are no details. I wonder, was the brother calling his sister too much? Did that lead her to "have no life"? Was the brother in and out of the hospital and not taking his medication? Why must your life be negatively impacted by the mental illness of a relative? Because they are acting bizarre? I know my mother was mighty upset when I didn't shower for a month. My mother also has to witness me walking around the house naked because of a psychotic delusion that told me to do this. What was her reaction to that? She pulled down all the shades so that the neighbors couldn't see.

Was the writer of the letter intimately involved with her brother's care and then one day said "enough is enough - I'm wiping my hands clean of the whole problem". The writer of the letter puts all the emphasis of her losing contact with her brother, and not helping him, on the weight of the phrase "I had no life". And upon this phrase, people rush to sympathize with her. What, did she give up husband and children and friends to help her brother? You can be surrounded by community, and uplifted by community, but somehow I don't think this person took that route.

I know that my mother was weak for kicking me out of her house and telling me to go live in the streets. I know that if I didn't pay her rent right now she would kick me out of the house and tell me to go live in the streets again. That's the type of person she is. Odd thing is, probably, in her old age, it will be me who takes care of her. Just last week my mother called me, having a panic attack, fearing that she was having a heart attack. I stayed on the phone with her for two hours. I consider it an honor to have helped her, not an annoyance. And I was ready to pack my bags and be down at her house to stay overnight should she feel the need for company or need me to take her to the emergency room, to establish for certain, that she had not had a heart attack.

My husband says that in primitive society the mentally ill person was simply killed. If you were a burden on the resources of the society you were killed. If you were perceived as being not right in the head your life wasn't worth much. In the bible it said that Jesus saved several people who were "demon possessed" from a crowd who were ready to stone them to death. Probably these demon possessed were mentally ill.

In our more civilized society there is some sympathy for the mentally ill, but a great deal of sympathy as well for the caretakers of the mentally ill. NAMI is strong, and NAMI is for the people who care for the mentally ill, not particularly for the mentally ill themselves. I wrote in the last post the opinion of a man who did not think my husband should date me because I am mentally ill. His attitude was very much, "If you get involved with her she will ruin your life."

But my husband says that I'm the best thing that ever happened to him. And he takes very good care of me. And I do happen to know, that because he takes such good care of me, he considers himself, in his own mind, to be a hero.

Sickness does not have to be a drain and an heinous thing. There are heroes out there. And I think that in their heart, a hero knows when they have acted heroically. And it lifts them up.

Sunday, March 28, 2010

The Social Worker

Printed out 65 pages of my book for my husband to read. The first half was originally written with a different narrator, all "I" statements, the main character of the book. I went back and re-wrote her first person point of view to an omniscient point of view.

My husband said the writing really started flowing once I was firmly wedded in the new view point of the book. I worried over some of the opinions of the social worker character - she is not really a nice person. I think that the kindest, most perceptive person in the book will be the psychiatrist assigned to my main character. Through his mouth I'll say the most important things I've learned about why not to commit suicide.

But alas, the social worker sees her patients as having forces within themselves that is one step up from monsters. She sees all the patients as having interior "tigers" that are busy "mauling" their victims from the inside. She would like to love her patients, knowing that love is a force that heals (so she's read and believes) but unfortunately she knows herself and she knows that she is incapable of loving strangers. And strangers are what all the patients really are to her. She is not a kind person, she is not a loving person, and I believe that this is typical for what one would find on an inpatient unit on a psychiatric ward in the hospital.

My husband was counseled not to date me by a social worker who called me a monster. He said to my husband, "You don't know what she is like not on medication. You can't trust her to stay on her medication, could go off medication at any time. She could be a monster. If you date her she will only bring you grief, because you know how mentally ill people are, they can never keep it together." This from a man who had a career working with the mentally ill. I knew him for two years before he made this statement trying to be helpful to my husband, and all that time I acted like a poised, reasonable person in his presence. Mostly I was quiet around him. He was friendly with his clients, laughed a lot with them, and never gave the slightest hint as to his personal perception of us. So I know, that no matter what their professional behavior, there are professionals who perceive the mentally ill as monsters and fuck-ups.

It is a human trait to cast some humans in the guise of animals or monsters. The Nazi movement did this to the Jews, and many many people went along with the assumption that Jews were less than fully human. This is the same with Negroes, there were many many people who could use them as slaves and treat them abominably here in the United States because they did not perceive them as fully human. I think it is reasonable that a social worker who sees people at their sickest and weakest, when they have to be hospitalized, should form an opinion about the mentally ill that is not "politically correct", but rather, is instinctive and negative. To know us intimately (as a social worker would on an inpatient unit) is not to love us, it is instead to form an opinion that we are less than others of the human race. Not handicapped, not relapsing, not disabled, not in crisis - those are all terms that don't come from the gut. Those are all terms for people who are capable of having tender feelings toward the mentally ill. To know us, for some, isn't to love us, it is to grow tired of us, to grow scared and wary of us, and to form an opinion that we are something less than fully human.

Just as the Roman Catholic church have pedophiles in its midst, so the mental health community have workers that view the mental ill as monsters. In fact, I would say that there are more mental health workers that view their clients as monsters (deep in their hearts) than there are pedophiles in the Roman Catholic church.

Where do I get the inclination to believe myself as subhuman? Why from the people who have helped heal me of course. I lived for two years in a psychiatric hospital with a therapist who had not an ounce of compassion in her. Upon refection, I may not have made my social worker character in my book sufficiently inhumane. That's o.k. I still have more scenes to write with her in them.

Wednesday, March 24, 2010


It is hard to explain how my mental illness impacts my life. I can act so normal, and have so many normal experiences, but the illness is real and it doesn't go away. I've created a sanctuary from it, I protect myself and do not suffer it that much, but every now and then I try to do something that is so easy for people without an illness, and when it devastates me, I get a signal. A sign that my mind isn't like others.

Last Saturday I had a morning appointment to work on a church pictorial directory with two other women. Only one participated, we did layout work that involved cropping photographs. I worked from 12am on Saturday until 3pm. Three hours. Three hours that completely drained me. I knew that if I wanted to go to Church on Sunday morning I would have to spend all day Saturday recovering from the activity I participated in Saturday morning.

Essentially when I got home Saturday afternoon I stayed in bed the whole day. Watched two movies. The first movie had some scenes of domestic abuse and I was in a state of tears watching most of it. Emotionally weak, easily influenced, no place in my mind to hide. Simply raw to the world. The second movie was a romance and did not really affect me.

I told my husband that after the first movie I was tired but no longer in emotional pain like I had been after participating in the church activity. So my recovery had stages. The first thing to heal from was an over stressed mind that made me feel to be in pain. The second thing to heal from was the weakness that my mind suffered after healing from the pain.

Saturday the weather was beautiful, warm in the middle of March, and everyone in their right minds was going for a walk. I could not go for a walk because I could not bear to be overstimulated by the wide expanse of blue sky over my head or the houses and people that I would have passed while walking. When my mind shuts down I can't really even walk, I don't have the will power to move.

I am not part of the 25% or even 60% that recover from the onset of a schizophrenic type illness. I live by my wits, this means, I don't provoke the illness and bring on painful symptoms. But this means I live a simple life and a withdrawn life.

The people in the recovery movement don't understand one thing. Anyone can recover if they simplify their life enough. If they cut out experiences that people without a mental illness count as normal. Recovery means learning that watching t.v. hurts less and is less stressful than interacting with other people. Recovery can mean that you learn you will never work a full time job and that you live on disability benefits or on the kindness of family. Recovery may mean that you understand you will never have a sexual relationship again - it is too much of a drain on your sanity. Recovery means downsizing your life drastically. Recovery means discovering how fragile you are and what your limits are. You then live within these limits. Exceeding the limits means further breakdown and more hospitalizations and probably more medication.

No work. No sex. A lot of television or walking aimlessly around town. Live safely. This is recovery for some schizophrenic people. They aren't lazy and they aren't unmotivated. They are living within the boundaries of how their diseased mind can function.

It pisses me off that the one activity that I did Saturday morning destroyed me for the rest of the day. I look back and wonder what did it. Was it the concentration needed to crop a photograph within an eighth of an inch? Was it the socialization I did with the woman who was working with me? Was it being in an environment that is not the safety of my own home? Or was it simply this; my mind is weak and unless I protect it by living within safe, predictable routines I will suffer the full awareness of diminished capacity.

I am in recovery from my mental illness but still my life is nowhere near what my life was like before the onset of my illness. And I'm not talking about having to have a career change. I'm talking about bizarre patterns of behavior, that mimic laziness, that I must participate in if I am to save myself from my illness. Most people would not call watching two movies in a row bizarre. But I do. Because I was capable of no other behavior. Any other behavior and I would not have been at my prime for doing the moderately difficult thing that I do on Sunday; go to church and write my blog. How many people know that what they do Saturday morning will determine whether or not they are up to doing an activity Sunday morning? Normal people simply do not live that way. They bounce back, they recover quicker, a nights sleep restores them fully. These are not truths for me. What I do one day has an impact on whether or not I can function the next day.

I rarely go to movies. I don't go to plays. I don't go to musical performances. I have my church groups that last about an hour. An hour of playacting normal. I can manage that. I have a peer support group one night a week that sometimes I return from enervated, sometimes sick. Never know whether or not that group will drain me. Life is dry and simple and safe so perhaps I can do what is most important to me; creative writing most mornings. My book. My life is stripped bare so that I can be a writer. It is a sacrifice. Currently this church project of the pictorial directory is interfering with my book. But the directory will be finished and I know that I will never ever volunteer for a church activity again. Lesson learned.

Walking the dog is a slightly stressful activity. Walking only me takes just an edge less concentration, less difficulty - I'm only responsible for myself. Who in their right minds makes a distinction between talking a walk and taking a walk with their dog? But for me such things matter. This is recovery - learning that you are not the same walking yourself and walking your dog. That the brain is stressed more in walking the dog. Because I must avoid stress, the dog doesn't get walked that often. Because I am worried about my physical health I take on the stress of walking myself, even when I am so sick that all I can do is walk with my head down looking at the pavement of the sidewalk.

I'm disgusted with the recovery movement. The people who are sickest have no voice. The people with a voice don't understand how different and blessed they are.

Yeah, I've seen recovery. I've seen a schizoaffective woman who cried almost every day stop, after five years, crying. And she managed to move from a group home to her own apartment. She's made some friends. She was a teacher but now she still cant do her own bills or own medication. But she is no longer crying as much, she's accepted her lot in life. That's recovery.

Sunday, March 21, 2010

The Broken Bracelet

The choir in church sounded horrible today. They sang while the collection plates were passed. Parts of the choir sang, first the women, then the men, and sometimes they were supposed to sing soft and sometimes they were supposed to sing loud. When they sang soft it made me think of a single line of thread. When they sang loud the men just belted it out and it made me think of a rusted oil barrel. I almost laughed.

Sometimes I know in church I'm not supposed to laugh but I do. Today the children sang up on stage and the littlest girl was playing with the bottom hemline of her dress. I thought, "pull it all the way up!" and what do you know, she did it. She was wearing white tights and you could see an awful lot of her naked tummy too. She did it twice. I laughed. Nobody else was laughing.

I am still recovering from a fight I had with my husband. Over two weeks ago we had our first fight, over whether or not to give his daughter $1,000 to build him a computer. He sent her this email and I complimented him on it. I thought it was well written.

"Up front...Karen and I just got into one of our worst fights in a long time. The problem is, she doesn't trust anyone who is not a professional to build a computer...and she continues to point out my debacle with my Averatec as proof that we should never mess around in the innards of a computer.

She believes...and with some justification...that I pretty much gave you a promise to let you build my next computer. We have hashed around with components and pricing ect...and in fact, I had pretty much expected I was going to let you do the build...all this without actually consulting with Karen.

She has a lot of very real concerns, some of which come out of the fact that she doesn't understand how computers are put together, ie, purchasing components and plugging them together. But the bottom line is, she is uncomfortable with us spending a grand or so on something that has no warranties or guarantees. And I guess I have to be too. Right now, things at GSP are kind of up in the air. There are things going on behind closed doors that make me wonder.

So, I'm not sure I can justify even getting a new computer at all right now, since the old one works fine--except for the screen and a thousand dollars is a lot of money...

Please don't be upset with us...we really are just trying to live safe.

Love, Dad"

The Averatec computer was the computer he broke while he was trying to upgrade it himself. Yeah, he can't get it out of his head that all you do is plug in components, even though when he tried to plug in a component he completely cracked and ruined the motherboard, the most expensive component of the computer. It came down to the wrong movement of a thumb. Even though he failed at fixing his own computer, and broke it even worse than the problem it was suffering from, he still regards computer maintenance as easy to do. He doesn't learn.

At the end of the fight I said, "You know, her reaction will probably be to get angry. But if we could only talk this thing out, maybe we could come to some agreement. If she is certain of her skills, and offered to put the money up, and we pay her back if the computer works, I would be fine with that."

Last Monday my husband emailed me from work. He forwarded an email from his daughter offering to build the computer with many conditions, but basically we put up $500 and she puts up $500 and if the computer works we pay her what she paid, and if the computer doesn't work she pays us what we paid. I thought this was fair, and I was encouraged that she would risk her money - it showed me that she has some confidence in her computer building skills. She noted in her email that if the computer doesn't work, she automatically fails her class. This assertion did not impress me because she repeated the last year of high school after failing so many classes and she has repeated college courses for failing classes. She has a history of failing classes. She's no dummy, she can get A's and B's and C's. Only there is no predicting with her which way it is going to go. But to give her credit, she wanted to get all A's this semester and envisions herself one day going to MIT. Yeah, I think she's a dreamer like her father.

So the email my husband forwarded to me from his daughter had a history of an email conversation tacked on to it. He and his daughter just kept on passing the same email back and forth. I read the history of their emails, and this one was their first, sent right after the one he shared with me, the one that concluded our first fight, the one I had praise for. Except this email I read was for his daughter's eyes only.


Apologies for the e-mail about cancelling out of the PC. Since I BCC’d Karen that e-mail, it had to read like I was in at least a ‘semi-consensus’ with her. By the by—she was PMSing like a fiend and she actually sounded exactly like Debbie when she called me nasty names for agreeing to let you build me a computer—like it was some crime. Of course she apologized later the next day, but still.

Anyway. I still do want you to build me the computer. We can still discuss the build and hash out all the details via e-mail if you still are interested. Goal is a grand or under. However, I cannot front you the money. You would have to do the build, then bring it on over and show us (read Karen) the working, fabulous package, where-upon I can and will pay you.

Oh yeah, this is by way of an end run around Karen. She was not against getting a computer from you that you built…simply she thought it was stupid to give you the money to pay for it up front with no guarantee it would even work. She really doesn’t understand the idea of component assembly at all!

Let me know!"

Debbie is my husband's second wife, my step-daughter's former hated step-mother. Debbie was an alcoholic who was always drunk, screamed, threw things and hit, so he was insulting me by comparing me to her.

It is interesting that my husband's daughter's reaction to his idea that they do "an end run around Karen" wasn't "yeah Dad, you and me forever" or "yeah Dad, Karen is awful". Her email to him was short and sounded worried. It was this;

"I am okay with anything. I just dont want to get into trouble.... Or get you into trouble."

I pointed out to my husband that we are the only stable relationship his daughter knows of. Her mother is a mess when it comes to men. She goes from one man to another and cries on the phone to her daughter when a man is verbally and emotionally abusing her. Once she told her daughter that she was only sleeping with a man so that he would give her money that she could then give to her daughter to attend college......... like look at the sacrifice I'm doing for you with my body so that you can go to school. About a year ago my step-daughter asked, with perfect innocence, whether or not her father and I were having sex. We assured her that we love each other very much, find each other physically attractive, and do have sex often. It felt like we were talking to a child that found marriage to be incomprehensible and capable of any deviant condition. It brings my husband's daughter no joy to see a fracture in her father's current relationship, and probably it is impossible for him to return to a father-daughter secret union like they had against the horrible and abusive step-mother Debbie.

I did have to remind myself that my husband was having secret conversations not with another woman, but with his own daughter. Still, I told him he was "a snake in the grass" and that my trust with him was broken. In my eyes he was near to saintly, I really thought I knew my husband and that I had every reason to be really proud of him. It really came as a shock to me that he would say mean things behind my back and plot behind my back with his daughter.

After my husband emailed me with his daughter's computer build proposal, and after I read the history of their email correspondence, a curious thing happened. I was at my computer working on my book and a bracelet popped off my wrist. I was doing nothing to stress it, it simply fell apart. It is a thin white gold bangle that was given to me as a Christmas present by my husband. I treasure it and wear it all the time. It has a hinge, on the opposite side of the clasp, and the small pin that keeps the hinge together apparently fell out. When I told my husband after work that we would have to walk down to the jewelers to have it repaired he asked what happened. "Isn't it obvious?" I said, "My trust was broken and so my bracelet broke as well."

"Oh" my husband replied, "it is a symbol."

But curious physical things happen when there is a stress between my husband and I. Once we were in a front room of our apartment having a heated debate and we heard a huge crash in the back room. We ran to look and saw that a ceiling light fixture had fallen down. It was made all out of stained glass and luckily none of the glass was broken. But I've always felt that the violent emotional energy generated between me and my husband played a part in the fixture falling at that time.

On the morning before my husband mailed me his daughter's email, with the history of their correspondence attached, I had an odd dream. The meaning of the dream was very simple, but when I woke, I did not know what to do with the knowledge that the dream contained. My dream was about a farmer from out of state. He farmed in Maine and he had come down to Vermont to sell his watermelon. He sold some watermelon and then I was left holding the money that came from this sale while the farmer went back to Maine. I wanted to give the money back to the farmer, the money clearly did not belong to me, but I did not know how, in the vast state of Maine, to find the farmer. I woke with the image of money in my hand, but money that I knew, by rights, was not mine. I simply tucked the dream away and did not ponder it.

However, after my husband said that his daughter was going to stake $1,000 of her own money on the success of a newly built computer I suddenly found a meaning for my dream. I told my husband that the $500 we give to his daughter toward the computer build could be non-refundable, that whether or not the computer worked she would not have to pay this back to us. I told my husband he earned the money in the house, and it probably would be his wish to give this "incentive" and "trust" money to his daughter. It would be money that was given on the strength of his belief in her, and if lost, I knew it would not be mourned by him. He would never view money spent in a joint effort with his daughter as wasted money, even if the outcome was a bunch of unusable computer junk. I couldn't force myself to give up all the $1,000 for the computer build, it seemed that his daughter had to realize that there was risk involved in what she was doing, and thus, to take the endeavor seriously. There is nothing to motivate oneself toward excellence like having your own precious money at stake.

My husband was very pleased when I said that we could give his daughter $500 toward the new computer, come what may. When I said that my conclusion was made on the strength of a dream I had had that morning, interpreting that the farmer's money I was holding to be actually my husband's money that he had earned himself, he said, "well, that dream was just coincidence." The trouble here being that the dream occurred before the drama with the computer emails. But my view is that space and time and causality don't always flow in a straight line. As I believe that you can dream about events before they happen, so I believe that you can dream about conclusions and solutions before they are necessary.

I mentioned several weeks ago reading a book about Emily Dickinson. In the book was an interesting story about her father. He was a lawyer, and his work sometimes involved traveling to other towns. The town that he was devoted to, where his family lived and that he was politically and financially involved in bettering, was Amherst, Massachusetts. One night, while he was out of town on business, he had a vivid dream of downtown Amherst being partially demolished by a large fire. For a second night, after this first dream, he dreamed the exact same dream and then mentioned it to someone in the morning as being worrisome. The third night there was a big fire in downtown Amherst.

But this is not the first story I have heard about precognition.

I became friendly with a worker at a social rehabilitation clubhouse. This man told me that all of his children, when they hit a certain age around puberty, suffered from dreams of precognition. The dreams were troubling because they were usually about disasters the made the news such as airplane crashes. He said that when he was that age, he went through the dreams, and that he was able to council his children when it happened to them. The confusion that the children suffered was from believing that since they dreamed it, they must have somehow caused it. This experience was, for him, an inherited family trait.

The man that I just described as having a conversation with was very sane and very kind. There was no reason for him to lie to me.

If you live long enough you begin to gather stories, some of them your own, and some of them from other people, that describe a reality that is wild and unscientific.

I believe in a reality that is wild and unscientific.

Monday, March 15, 2010

What I Love

I love it when I have a day that is totally in the clear. I mean a day where there is no alarm clock, no commitments, no need to travel anywhere. Usually on these days, if it is not raining, my husband and I will go for a walk.

Today it is raining and today I set the alarm clock so I could call the doctor and cancel my appointment for my eye infection. It is courteous to call the doctor early when you are canceling so that they can re-schedule the spot. Over the weekend the infection seemed to clear up on its own. My husband has medication left over from his eye infection, several years ago. He kept the tiny bottle in the refrigerator. I did not notice it. I've been using the drops. No medical doctor's appointment; no deduction from our insurance reserve. This pleases me immensely. Crafty of my husband to keep his old medication. The due date is off by a little less than one year, I bet its still good. My husband tested it first on his own eye. No ill effect. So I was convinced to use it. It did take some mild convincing. At first I was like, ew, use your old medication? Gross. Our eye infections could be different kinds, of course this medication can be the wrong thing. I think he had pink eye, and I do not have pink eye. But as long as it doesn't hurt, why not? One drop in the morning, one drop at night.

I wrote today for two hours. There is a section of re-write that is a mess; some paragraphs repeating information that was in preceding paragraphs. Plan to straighten out this mess. Procedure - print out mess on paper, read it once, put it away, then hand re-write on paper in a notebook from the beginning. Whenever I get stuck I take the computer out of the equation. Back to handwriting the old fashioned way is a method to straighten out your thoughts and stimulate inspiration. Will do this exercise tomorrow when I write. Tomorrow is a free day, from top to bottom, the kind of day that I love. And it should be sunny, which means we will go for a walk.

Am suffering from chocolate withdrawal. I know I can't lose weight when I eat chocolate. And I know that once I start eating it it is hard to stop. I want more, more, more until I am sleepy and satiated. My husband has the same problem with alcohol; once he starts it is hard to stop. My solution is don't start. Not even one small treat. My husband's solution is to only drink one beer when we are out at a restaurant. No booze kept at home. No chocolate kept at home.

It is so hard when the pharmacies come out with Easter candy. This is right after Valentine's Day candy. Which is right after Christmas candy. Which is after a Thanksgiving feast. I really haven't been on my diet since Thanksgiving.

But today I am being strong with my food. I will not binge. Neither, according to my schedule of things to do this evening, will I exercise. I have to see my therapist and then I have to go straight to the church for some Christian education. I can always skip the church, although, it is a stress-free environment. I say very little during these classes because I don't want to give away how ignorant I am of the Bible. Pretty much everything I hear is new to me. Happily I go to a church that is in the tradition of "question everything". Bet most people didn't know churches like that exist. But mine is. Only old people go to our Christian education. I'm the youngest. I guess people choose their religion and then don't challenge their beliefs. I think you either move ahead or you die. Stagnation is death. Or, the young people with children don't want to leave their children to go to an even that will help them to grow spiritually. Maybe they are just tired after a day at work and don't want their evening cluttered up with activity. They want to eat and then watch television. Rest. I just get the feeling that people my age in church aren't having a crisis of faith. I'm having a crisis of faith. In fact, I can't imagine living life without being in a state of questioning and seeking.

Read an interesting quote last night. It was in the psychology book "He" by Robert Johnson.

Thomas Merton, the Trappist monk, once said that a monk may often be happy but he never has a good time.

This struck a chord with me. I can't say that I'm having a good time when I write, because it is work, and because it is draining, but I can say that when I'm writing I'm happy.

And I can say that my marriage makes me happy, and that walks with my husband makes me happy, but not because I'm having a good time. I have to summon up the motivation and the energy to go for a walk. They don't happen naturally. My natural state is to be cocooned in sheets in bed. Yes, good times are very, very rare. Contentment happens more often, and while I am content, I think I am happy. But because I have a mental illness I cannot summon the enthusiasm of having a good time. I do not lie when I smile, and I think I smile a lot. But I do not have reserves of energy to emote too much enthusiasm. I can't get wrapped up in an event. All events exhaust me, good or bad. All experiences lead to mental depletion. Every event is felt at the same level of immediacy and introspection, so, I suppose, I am not a better friend to one person over another person. I am the same to all people. And all people drain me. The pattern of my life is dreadfully simple; act, rest. Act, rest. Act, rest. How can I have a good time when I know that I am going to pay for it later?

There is much about my life that is monkish and withdrawn.

Sunday, March 14, 2010

Love Thy Self

I pushed myself too far. And the consequence was disaster.

I am part of a three women group who have been picked by the minister to put together a church pictorial directory. Olan Mills is a photography company that took pictures of all the church members. They also sent the church an instruction packet to layout a directory including; cover page, staff page and message from the minister, activities pages, the photographs, photographs of missing people (people who did not sit for Olan Mills) and a long list of addresses, phone numbers and emails.

We have almost arrived at the point where we cut and paste photographs of church activities. One of the women in our group ran a newspaper and she is driving us to perfection. We are making mock-ups of the pages before we crop any of the precious photographs (for many no duplicates exist), it is exacting work and requires precise measurements. We are working with tolerances of an eighth of an inch. When you are off an eight of an inch it shows.

I worked for two hours and began loosing my concentration. Oh I lost other things as well. I lost my sense of humor. I lost the ability to socialize. One woman asked me a question and I said, "Could you repeat that please, I didn't understand what you said". Trouble was none of these women know I have a mental illness, and I had to leave their house fast, but did not know how to arrange an exit. I told them "my concentration was gone". The woman who had owned the newspaper and whose house we were visiting got confused and offered to make me a cup of tea. As if my nerves needed soothing. I am certain negative energy was rolling off of me. I probably looked upset. She offered twice to make me a cup of tea.

When I got home I gobbled down a ham sandwich, ate an apple too, and then got into bed. My body was so cold, it was shivering. I have no doubt that my body temperature going haywire was a direct result of my mind being over-driven. I existed in a cocoon of blankets waiting for my mind to heal. No music, no people, no activity, no sleep.

When my husband came home from work he suggested that evening I "pick out a comedy-romance" movie to watch that night. He basically said, "pick out whatever will make you feel better, don't worry about my tastes". He does this when I am very ill. He sacrifices his own right to negotiate over the movie we watch. It is very honorable and caring.

The next day I talked to my therapist about the disaster. I said that if you had put me in an MRI you would have seen odd or diminished patterns of blood flow to my brain during my experience. Nothing says "brain damage" to me as having an experience such as becoming overwhelmed and over stimulated. It was especially humiliating because the other two ladies, who have both spent lives working full time jobs, found two hours of activity completely non-stressful. They could have gone on for several more hours. I told my therapist that I was depressed while I was recuperating, but I was not suicidal. I did not hate myself enough to want myself dead.

My therapist suggested that while I was "wounded" I try loving myself.

So yesterday, I went back to the ladies and we had another meeting. It was supposed to end after two hours (I had made it clear that I couldn't work longer) but me being me, I pushed myself for an extra hour and a half. Disaster again. My brain was in a weak, exhausted state and all I could do was cocoon myself in bed.

This time I tried loving myself. And this is what I could manage.

I thought of a heart. It was a very specific heart. It was made out of squishy, clear plastic. The interior of the heart was filled with a red gel. Suspended in the red gel were sparkly pieces of glitter. It was the type of toy heart that would be on sale as a novelty item at Wal-Mart or a pharmacy. I thought, as I was imagining it that it was a toy that I would have loved to have owned as a ten or twelve year old little girl. But I did wonder, why not a picture of something organic? Plastic is fake. So I searched my mind and came up with a green moss heart, but that picture could not be held for very long in my mind, it was the plastic heart or nothing. My mind really liked the plastic heart. So I gave all myself to this heart, quietly holding it in my mind. This was the best I could do to love myself, not being certain how to do it.

Later that night my husband and I discussed the experiment. I said that while the picture of the heart was being concentrated on I did not hate myself, there was the absence of malice, but not much warmth of love.

The heart brought about a cathartic moment though. After picturing it for a while I started crying. Soft crying. Purging crying. Tears that cleaned me up. Oh, I know that if I hadn't been picturing the heart there would have been self-hatred, self-disgust, and there would have been no crying. Without the heart I would have been thinking of only how sick I was. This is cold fury and it leads to thoughts of worthlessness and killing. I doubt most people kill while they cry. They kill dry eyed. When you cry you are giving yourself mercy. So when I cried, after picturing the heart, it was a setting free and a relief. I had to cry because the pain in my mind was real. My mind had been over worked. It was malfunctioning. I cried as a child when I got a vaccination shot. The needle, the pain, it leads me to crying. I was afraid. The pressure of the vaccination experience is expelled through tears. What imagining a heart did for me is it let the pressure of the malfunction in my mind be expelled through tears instead of thoughts of killing myself. When I cried there was, surprisingly, no sadness. Perhaps helplessness. Yes, I felt weak as I cried. I WAS exceedingly weak. I am wounded (by God) and sometimes the wound bleeds. The tears felt as natural as blood leaking from a cut in the flesh.

I did not cry for long.

Two things I have discovered about love. 1) If someone were hurt like I was hurt I would have compassion for them and love would flow out of me. I can feel my concern and need to nurture when my husband is in bed, cocooned as I was, but sick with the flu. When the object is outside of me I can love. 2) I can ritualistically love myself. When I put on a pretty necklace I feel a prick of self love. When I buy a new piece of clothing or a new tablecloth I feel a prick of self love. When I light the candles on our kitchen table, and we sit and have a discussion by candle light I feel a warmth inside that is good. After I shower, and am clean, especially if I have not showered for several days, I feel self love. There are little acts that make me feel that life is good. But to lie in bed, and suffer, too weak to do any type of activity what-so-ever, I cannot self love. I can't turn a light on inside of myself. I can't nourish myself when I am wounded. The best I can do is to place an image in front of myself (the plastic gel heart) and turn all my thoughts toward contemplating the image. This is a little ritual within the mind. I can only conclude that love must have an object to admire. And if the object is to be the self, something must sit in for the self.

My husband began describing a beautiful little girl that I was to imagine as myself. He gave her bouncing dark curls, large dark eyes, and porcelain skin. He suggested that when I was wounded to use this image of myself to love. This agitated me and I said that I could not imagine myself as a little girl who was pretty or worthy of love. And then I ended his line of reasoning by saying I would kill the little girl. My husband was speechless that I should think of doing this. I don't know where the instinct came from. But as I write this I am just as certain - that imagining a little, sweet darling and trying to give her love does not feel natural, does not feel as though it has anything to do with my version of my self.

No other therapist has ever suggested my loving myself when I am most damaged, when I am suffering the dark night of my soul. Oh, and its my therapist's idea to call it something poetic instead of "sick" or "brain damaged", my two most favorite terms for mental illness. All he and I have tactfully agreed is that I have mythologized my beginnings, that the mental illness is a chosen, spiritual path in life rather than victimhood. The start of my mental illness was not a rape. The start of my mental illness was a pact, an agreement, a challenge in pursuit of growth. A wanting improvement. That myth is described at the side of my blog.

There is another myth of wounding that is important to me. When Jacob was wrestling with the angel the angel both blessed him and wounded him at the same time. I am shocked at the audacity and strength it takes to wrestle with an angel, and then, to win. One of the most important dreams of my entire life was a dream of Jacob wrestling with the angel, although, at the time I did not know the outcome of the story. It took a therapist who has memorized quotes from the Bible to direct my attention to the myth, and perhaps, make it my own.

I must investigate more the myth of Jacob wrestling with the angel. Perhaps read the original in the Bible.

Kate, do you find writing to be lonely? I like that you find the path you are taking in the book to be mysterious rather than chaotic. If you would like someone to read what you have written, I would volunteer to take a look. I've been involved in writing groups, not online, rather, women meeting together in a class or in a special room in the library and critiquing each other's writing. I know how to be kind and gentle. I know how to find the gems. We both are writing about illness, who better to read your writing than a person who has been through an illness?

Ever notice in the beginning, or ending pages of a good book, where the author gives praise to people who have helped him or her write a book? It has always astonished me the number of people who have given feedback and are noted - the sign to me was that authors rely upon others reading their work. If you want the exchange can be mutual, I can send you something from my book and you can send me something from your book. I know an element of trust here is needed, perhaps you want to wait a while to get to know me better. But think seriously upon my offer of help - its given freely and with sincerity.

I have two people I send my work out to when it is readable, when I've got something with a beginning, middle and end. Like a chapter or two. I send a package containing a self-addressed stamped envelope that has correct postage for the weight of the manuscript to then be sent back to me. I send it to my brother and my best friend Rocki who both live in Connecticut (I live in Vermont). Their comments are really helpful. Once my brother said that he couldn't "see" my characters as he read - so this was a sign to add a lot of personal description. In that section, truth be told, I had gotten carried away with dialogue.

Authors should help authors whenever possible. Its a fraternity, or in our case, a sisterhood.

Wednesday, March 10, 2010

Mother Teresa

I am reading "Transformation; Understanding the Three Levels of Masculine Consciousness" by the psychologist Robert Johnson. I obtained the book through an inter-library loan. My therapist recommended it to me. I read it once last night and I'm in the process of reading it a second time. It is short and beautifully written.

There is an interesting footnote in the introduction that I'm going to re-write in its entirety This book was written in 1991 so the story is a little dated, even as its meaning is timeless.

There is a fine story about Mother Teresa of Calcutta. A reporter was finally given an interview with the Roman Catholic nun who has made such an impact on India by caring for the poor and dying. Ushered into the simple room, the reporter bust forth, "Isn't it terrible, Sister, Ten thousand refugees are pouring into Calcutta every day from besieged Bangladesh, and there is no food or housing for them!"

"No," replied Mother Teresa, "it is wonderful. See, he just took food," pointing to the shriveled youngster in her arms who had just taken a spoonful of milk. A true saint, manifesting a form of enlightened consciousness, had seen a miracle and found hope and reason to live in that immediate fact. The reporter, quite certainly, a man of complex consciousness, was lost in the terror and meaninglessness of the situation around him.

The way I interpret this story is that I've got to slow down and pay attention to the small miracles that happen in my life.

I see people who have entered my life as being miracles. That I should have found them, amongst all the strangers in the world, always seems like a gift of fate. I count the little old ladies in church as gifts of fate, I count my therapist as a gift of fate, I count my friends who have mental illness and yet live lives with dignity and happiness as gifts of fate, I count my husband as a gift of fate, and yes, I even count my animals as gifts of fate - for they all came into my life in mysterious ways - I was simply wandering down a path and encountered them like flowers that bloomed on the side of where my feet were walking. Oh, I think I would count my family as gifts of fate too. I did not chose these people who are close to me, bound to me by living for many years in the same household, now flung apart by worldly obsessions and concerns, but in the heart, very close indeed.

I met a psychic once who said that she was getting a message for me from my grandmother. She said my grandmother looked out for me and made certain that I encountered interesting people in my life. As if heaven could arrange meetings and greetings.

I'm a silly person. Last Sunday my minister was giving a sermon and she began to cough. She had a glass of water on the podium next to her and she took a sip. But still her words were intermingled with coughing. So she took another sip of water. Alas, her words were rough and she still struggled to speak. So I prayed to God to take away her cough. To heal her from a tickle in her throat!

At one point in the sermon the minister lead us all in a silent prayer. The prayer started off as silent, and then the minister added her words. I continued my own private chat with God and prayed for forgiveness for getting so angry at my husband that I screamed at him, calling him "a pig, a whore, and an asshole." I know now the words I needed to say instead. I needed to say, "I am not comfortable with your daughter, who has no experience what-so-ever, building a thousand dollar computer. I put my trust in professionals. We should put that thousand dollars instead toward a conventionally built computer for you. If she ever gathers a wealth of experience building computers, then she can build you one." But my anger took away my ability to reason, and I became verbally abusive. I know I did wrong. And so in Church I was praying for forgiveness. My husband had easily forgiven me, he says he does not hold grudges. But I had not yet forgiven myself. So I prayed and my closed eyes filled with tears and they leaked down my cheeks.

After the prayer the minister told us to greet one another with a handshake and the phrase, "peace be with you". To my horror I had to look my neighbors in the eye knowing that my own eyes were wet and perhaps red from weeping - I have yet to encounter one person who cries in church as I do. It is a fact that my emotions run very close to the surface. But I do not want strangers to know this.

It is something to accept as part of who I am.

Also something else to simply accept and move on from. I could not write well today. I worked on the book for one hour and then felt simpleminded and lost. My usual rate is a three hour stretch. But not today.

Open hands, open heart. I cannot be someone other than who I am.

So today, I have several free hours to spend in non-intellectual pursuits.

I think I'm going to look at table cloths or scarves. I need neither one. But for me, this constitutes high entertainment.

Tuesday, March 9, 2010

Red Flowers

Bought a bouquet of flowers yesterday for our kitchen table. Red flowers with long green leaves. It looks so pretty, so civilized.

I'm going to talk to my husband and try to convince him to volunteer one night feeding the homeless at a soup kitchen. The work would be done in conjunction with my church. I want to see the mentally ill who are not medicated and not part of the system of recovery. I want to be educated. If my husband doesn't want to do it then I can go as part of a group from church, but with my husband I can sit amongst the men and have conversations with them. On my own, a single female, I don't think it would be so good to sit amongst the men. Having my husband introduce me as his wife gives a sign; treat her with respect (or I'll beat you up - the ever present male threat) and she's off limits sexually. I need to make that clear with the homeless men, that I'm off limits sexually. I have a feeling that the women in the church stick to the kitchen, while their husbands go out and eat and talk with the homeless.

Writing today was mixed. Came up with two good ideas. But in-between, despaired that this section of writing isn't as good as I would like it to be. Have to remember that this is all rough draft work, the book shifts on me. I get ideas to place in earlier writings. Perhaps introduce characters earlier. Having problems with the point of view, now that I am writing from a place of third person narration or omniscience. Before always being in the main character's head seemed normal, now it seems abnormal. How much time should I spend worrying about what she thinks, and how much time should I spend worrying about what the narrator thinks? In the end, I know the narrator is going to win. It is more powerful. The insights of the narrator span that past and the future. The insights of the narrator are profound. My main character is damaged goods. I can only show with her a damaged person, broken around very narrow channels. She is limited. With a narrator that can comment on any character, my area of play is very large. This actually is a bit of a danger to me, have to fight to stick to the story and not go off on tangents.

I saw inside of myself today that a part of me thinks that the worst of the mentally ill are animals. Corrected this perspective. Sanity is present even in those most guided by psychosis, psychotic thought is always mixed, the self doesn't merely dissolve. Was writing about teeth. Do the mentally ill who are missing their front teeth feel shame? Feel the loss? Of course. They can look in the mirror and despair even while they are psychotic. Being different, in the way you think, doesn't mean that you have lost complete perspective on where you sit in society. You can be shy about the loss of your front teeth even as your behavior and economic status puts you on the lowest rungs of society. Outcasts know that they are outcasts. Psychosis isn't a balm for a wounded heart. Psychosis isn't complete escape.

Was I an animal when I was psychotic? No. I had delusions. But I know I still wanted to be pretty. I may not have cared that much over whether or not I was accepted by others. There is a self absorption with psychosis. But I didn't want to be an outcast. Obsession saves you from worrying what the other guy thinks. I believe I felt nearer to God when I was psychotic. I felt justified. Perhaps it works this way; for some the loss of teeth don't matter, for others it does matter. I would have mourned loss of teeth when I was psychotic.

Now that I am sane, my fear of losing teeth to poverty is pretty keen.

I think I'll eat an apple, and then, go and brush my teeth.

Sunday, March 7, 2010

Tenacity of Life

I love the question Kate posed to me in her comment; What would you say to someone who was schizoaffective, manic-depressive or schizophrenic if they were suicidal? In my last post I seemed to be on the verge of saying; watch out, it is only going to get worse. Catastrophic advice.

I wrote my post in a moment of weakness and I'm afraid that what I had to say was not life affirming. I talked about the horror stories I knew. They were all true, I didn't make anything up. I was in a state of horror myself, thus the choice of topic.

To someone who was suicidal I would have to say, choose life. Even if that life is one with a diagnosis of mental illness. Even if you must live a life that is outside of the norm, where you have a life that is full of pain, still, I would say, bear the pain and choose life. Because pain is transitional, it happens only in the moment and then it lifts. Because there are little things in life, like the warmth of the sun shine, or the feel of your body as you walk and tire it, that feed and nourish the soul.

Most of all I would say choose life because you are stepping through the fire of mental illness (the pain is transformative) and you are being purged, you are being cleansed, and you are being made anew into someone that God smiles upon. You will be the weak, the disenfranchised, the struggling, the imperfect, but most of all, - most beautiful of all is what the fire of the mind does to you; it makes you authentic.

The highest compliment I've ever received was from my sister. She said, "You are the most human person I know." She could not have said that about the person I was before the mental illness. No, that person she was a little afraid of and would probably have been called a bitch. It was what the mental illness did to me, fifteen years later, that made her think about the compliment. The mental illness changed the life path I was on, and as a result of this, I became a better person. I'll take being human as a high compliment.

I don't hear lies and falsity in the voice of most of the mentally ill I have known. I hear ringing clear and delightfully as the sound of a bell is a voice that tells it as it is. The mentally ill usually don't have the energy to construct elaborate masks and they can't play games with you. They are direct, they are candid, and they are refreshing. The one game I know that is played the most by the mentally ill is; hide. I see mentally ill people withdraw. Sometimes the illness brings a type of shyness. But mostly, instead of shyness, I would call it humility. Rarely have I met a mentally ill person puffed up with pride. The authentic person I can imagine would have humility instead of pride.

I am not a good one to council the suicidal. But I know enough to know that suicide is a mistake. Me, I cling to routine and to work to stay alive. I cling to the happy emotions of my husband. I cling to a type of searching that I find myself doing with books and with going to Church and with conversations with my husband- trying to find religion, trying to believe in a God that loves me and walks by my side. I do believe my mind is known, first to me, but maybe, first and foremost to a higher power.

There was a woman who existed before the mental illness and she was often dissatisfied with herself. I am so grateful that I've put some of her behind me; the second guessing what I say, the painful remembering of conversations where I wish I said something better, the bruising I gave myself for not being more socially popular.

But that woman was driven, and so am I. That women wished to excell, not for fame or money, but for the feeling of power given to ones who try their best and always work themselves to the bone. Both my parents work themselves to the bone. As I was growing up it my father who kept up a grueling schedule as a doctor, now it is my mother who in her later years hasn't a moment to spare because of her three businesses, one of which is a bed and breakfast. I've inherited a whip at my back that drives me. Oh yeah, I'll be the first to admit that I spend a lot of time in bed staring off into space. My life from the outside looks simple and carefree, except of course, for those two to three hours every morning when I write. But the reading of books, the watching of movies, the taking of long walks - it seems like I've got it good and easy.

I suppose there are times when I'm contemplative and rest and times when I'm on and creative. Because of the illness the times when I create are limited; I don't have the brain power that I used to have before the illness. But what power I have isn't wasted. It is all used to produce - creative product. I love my mind. Sometimes I hate my mind for its moments of mental weakness, but fess up, I love the power of the mind. I love that the power can take meaningless pieces; tubes of paint, or a cacophony of words - and create paintings or essays and books. I've got a paranoid schizophrenic friend who takes her mind, and a base guitar, and makes music. It is as close as taking nothing and making something when you are dealing with products of pure mind. The times I've faced a blank page and drawn a picture. The times I've faced a blank computer screen and found voices for my characters to say shocking things. I summon up from deep within me creative product and the result is contentment. On rare occasions joy. Using the power of pure mind you can go from being a penniless pauper to king. This is the journey of the artist.

I know a paranoid schizophrenic who loves playing ping pong. His face lights up when he talks about his games, keeping score, and analyzing how his opponent plays. He isn't an artist like me, but his life really does revolve around playing ping pong. And I've known him long enough to realize that he has a zest for life. He has heard me talk about suicide, and this was his response (in an astonished voice) - "Why would you want to kill yourself, life is fun!" He is one of the great success stories of mental illness. Not because he went back to work and got off social security. He has tried to work and found that he cannot do it. He is a success story because from his point of view, and I'm taking his words here, every day he wakes up, and he wonders with joy, "how will I spend my day?" His days are precious to him. His life is precious to him. By the strict view of society he is mostly dropped out of it, but he has just enough money to keep from being a homeless man, and he has the social skills to find people, and places, in which to play ping pong.

This particular man is conscientious, caring, and honest. Morally he is the tops. When his dying mother, who he had taken care of for many years, wished to leave her house and all her money to him he declined, and said that the inheritance should be split equally with his two brothers. He is a reformed alcoholic and besides ping pong, he life revolves around attending Alcoholics Anonymous meetings. Externally the illness has left a mark on him. His face and demeanor is not normal. One Sunday he attended my church and I know that he did not blend into the congregation. He would be marked by the people in the congregation as perhaps a homeless man and someone to be afraid of. The illness has made him seem "other". He can't pretend to be a man with a lifestyle or mind like the majority of the population. He doesn't blend. But he seems utterly unconcerned with that fact. He isn't trying to be someone who he is not. He is perfectly authentic - happy with who he is. By society's standards he is a tiny fish swimming in a tiny pond. But I think he is buried gold.

This year I got his address and sent him a Christmas card. I see him every week Wednesday night. After I sent out my cards I asked him if he had received his in the mail. He said yes, but that he hadn't opened it. Why not? I asked. "Because I want something special to do on Christmas Day" he said to me. So he was saving my card for Christmas Day. Like it was a present. Which I guess it was. But how many people understand a Christmas card as being a present? It is taking what is small, and ordinary, and naming it large and precious. It is like a magician taking a lifeless white scarf and turning it into a flying dove. My friend transforms his simple days of ping pong and Alcoholics Anonymous and finds life affirming, deeply felt satisfaction in them. And his abilitiy to do this, in the face of having the worst type of mental illness named, that is I think the greatest success story I know of.

Friday, March 5, 2010

Feeling Weak

I'm feeling weak but I don't want to rest my head and sleep or read. The impulse to write drives me. I tell myself, "watch a movie" but instead I wish to do something constructive. If I watched a movie I would feel guilty.

Two days in a row I woke panicked. During the day my husband and I have been planning a very small business. It would require two employees besides ourselves and commit every penny of our savings. I would be in charge of the payroll for the employees, having to learn all the paper trail and tax needs that a small business generates. I would be essential to the business, and perhaps this point panicked me. I don't want to be essential. I don't know if I can be essential. I don't know if I can handle the stress of the responsibility.

To handle more stress, to become a more solid person, probably I would have to go on more medication. I could change my anti-psychotics from Geodone to Seroquil and add the mood stabilizer Lamictal. This would cause me to gain weight. It is a struggle right now, being under stress, to just keep my weight even.

My husband knew a beautiful Chinese woman named Chang. Chang had a husband who was embarrassed by the fact that his mentally ill wife did not work. So to satisfy her husband Change got a small job working at Burger King. This job was stressful enough that she needed extra medication to continue working. She got the extra medication and then developed a permanent side effect. She developed tartivdiskinesia, a type of re-occurring muscle spasm in the face. A permanent tick. Chang would I think, roll her tongue and smack her lips. It was freakish and changing medications would not change it.

One night I said to my husband "I was planning to use my best hours tomorrow to write. I should instead use my best hours to study my book on business accounting and make phone calls and emails to research the business needs. I created a little to do list. It all seemed so reasonable. Intellectually I am smart enough to do it.

But then in the morning I woke with a mighty fear about what might happen should an expensive machine the business would depend upon break down, and we have employees that need to work and get paid. And then I thought about how I had turned down my writing to work on the business, and I thought, "I am raping my mind. Causing it to act in a way that it doesn't want to act in". And I began crying.

I can't plan the business with passion and excitement, it only causes me to break down further. This bodes ill for when the business is up and working. Either I adjust or I break and require more medication and maybe a hospitalization.

Oh I know about recovery. I'll tell you about recovery. You don't get better and better and more competent and your brain heals from the illness. This maybe happens to some people. Other people get worse. I've seen it happen. Usually a stress comes along and re-wrecks your mind. You have a second breakdown. New hospitalization. Sometimes, a new and worse diagnosis. From mild manic-depression to schizophrenia in a woman who used crack cocaine. From schizoaffective to paranoid schizophrenic in a woman whose best friend committed suicide and she had to be re-hospitalized because of the trauma. From paranoid schizophrenic to suicide in a man who had successfully gotten off social security and worked full time. I've seen all this happen to people.

In myself I am less than I was three years ago because I'm using a weaker anti-psychotic and weaker anti-depressant. The anti-psychotic was changed because of the side effect of weight gain, the anti-depressant I had been using gradually lost its effectiveness. Now I need to see a therapist where as three years ago I was feeling well enough, happy and confident, that I did not need to see a therapist. Now seeing a therapist literally helps keep me alive. I rely on him that much.

Recovery? With mental illness the circumstances of your life could change or drugs could stop working. I've seen a stable woman who worked as a truck driver loose her job and become an emotional mess because her lithium stopped working. I've seen a nice, mild mannered schizophrenic have a nervous breakdown after working too many hours in a hospital laundry and have a marked personality change that ruined relations with his family. He acted out with anger, and his family feared for the safety of young children. Children that formerly he had been a happy uncle to, now there were no more visits. His family withdrew its support, having been frightened, and he withdrew socially from the world - his life pattern completely disrupted after his second, late, work-induced breakdown.

The horror stories about how mental illness gets worse, and the medications get increased, the body becomes obese and has medical problems, and the personalities change and the diagnosis changes - these horrors never get reported. The people who get lost in the system the system never keeps track of. There are no statistics about failure, only about success.

The failures can't speak for themselves. Illness mutes the voice, only when there is a success will you hear a voice. And that voice, being a success, usually says, "you can do it!"

I'm going to go read about the poet Emily Dickinson. The book is due back at the library in three days.