Friday, December 16, 2011

Medication Nurse

I had an interview at the beginning of last week with my medication nurse. It was a disaster.

I gave her a four page typed reasoning for why and how I wished to reduce my medication. Two of the pages were direct quotes from the Robert Whitaker book "Anatomy Of An Epidemic". The last two pages were my plan and my supports. People who wanted to help me and how they would help me if I should become more symptomatic. But she got stuck on the first two quotes, arguing with them, and never read any more of what I had written. Three and a half pages ignored. Any attempt by the author to view that medication was a toxic substance was met with hostility, by my meds nurse, a woman who makes heroes out of medication researchers. I know her hero worship, seen it before. The men who write textbooks on medications are her heroes. Indeed, she views herself as being very very knowledgeable about the science behind medication. She goes to conferences that doctors and researchers speak at. Probably her travel is paid for by drug companies. Or else the research is. All those chemicals in the brain is what makes up half of her conversation usually. She's nerdy. And she tries to show me how the synapses in my brain function by moving her hands in different motions.

My therapist is just the opposite, he says we really don't know why the medications work.

My medication nurse said to me, "Have you ever seen a schizophrenic long term without medication?" And she looked glowering at me with the most intense and furious look on her face. It looked like she wanted to hit someone or swear at someone. "I've treated a schizophrenic who has gone on and off of their medication for over 29 years." And then that look again of smoldering violence. Like she had seen holy hell and it was too awful for words to describe. And then the rub. Nothing was described. I was supposed to be scared and cowered by her tone of voice with no anecdotes, no outcome, no observation that was going to be communicated to me. She was an authority figure who wished to be respected based on thin air. And years of experience. Years of experience that were not described by a single example.

My high school year book quote was "He who asserts must prove".

I tried to explain that if my husband or my therapist should tell me to go back on the medication I would do so. That I was flexible and that I did not view going off medication as the most necessary thing in the world.

But she told me that at a certain point I might not listen to what other people had to say because I would not trust them. Right now, she said, you are competent. You might not be so in the future. "You mean I would be paranoid?" I said. She said yes, paranoid. But we both ignored the crux of what she meant. She hypothesized that off medication I would not be able to be able to make rational decisions.

Is being off medication that seductive? Lovely? Enchanting?

What does she know how I would be off medication? She has never seen me off medication! And I have never ever displayed any psychosis or behavior that was any where near incompetency while on medication. The absolute worst symptom that I have ever been described to her are ones of depression and suicidality and anxiety. Not exactly a schizophrenic type problem. I told her that I had been off medication for eight years. Truth was I had been on a very low dose of antipsychotic medication for eight years. That seemed to shock her for a moment. That I had lived long term on very little. And what made me take medication? Hospitalization for feeling suicidal. Once you get the diagnosis of schizophrenic it really sticks. And I think, people are afraid of you. Of the monster in you that they imagine.

I have never been paranoid. I have never heard voices. It is true that I have experienced catatonia and other negative symptoms of schizophrenia, most especially, difficulty concentrating. And it is true that I once, when I was nineteen, was delusional and manic. But in all my years of living on a low dose of medication, for all my fragility and inability to function like other people in this world, I never again thought I was the antichrist or that I could kill people with laserbeams coming out of my eyes. True, after 9/11 I thought that I could blow up buildings with laserbeams coming out of the palms of my hands, but like my earlier delusions, I kept this quiet and to myself because I knew, deep down, that it wasn't true and it was a delusion. I dealt with my wacky thought by making a drawing. I was on full strength antipsychotics when I thought about blowing up buildings too. It was just wishful, imaginative speculation, like wondering what life would be like if you were Wonder Woman. Almost all the time I've been delusional I've known that I was delusional and didn't act on my beliefs, except, I can say, when I was nineteen. Then the delusions seemed true enough. So I sought help in a mental hospital. Yes, I walked into reception because I knew I was delusional.

My therapist says that if you know you are delusional that that's not a delusion. I beg to differ. It feels crazy, and if it feels in your gut crazy, then its crazy. And a person has a limit to how much craziness they can endure. Everyone's limit is different.

So now I'm almost 44 and I don't know what I would be like on little medication. But I do know one thing. My best creative work I did 12 years ago when I was on a low dose of medication. I was describing to my therapist the power you feel after making something that you know is very creative. It feels wonderful. He said to me that in his observation, they type of medication I'm on makes your emotions blunted so that you can deal better with other more painful emotions. But that's what he sees in his patients. Blunted emotions.

One of my best friends is schizophrenic, hears voices, is tormented by demons, doesn't take medication, and is smart and sassy and living life in a dignified manner. So I know it can be done.

I don't want a lesser quality of life. I don't want anxiety, paranoia, or suicidal thoughts. Currently I don't have any of these symptoms. But I would like the return of how I made art during a certain period of my life. Ironically, because I no longer take Zyprexa or Seroquil my art is more primitive and less sophisticated. I look at some of the drawings I did while I was on Zyprexa and say "Wow". That drug really coordinated and enhanced my thought. Sophistication and nuance is what I think of when I think of that medication. Of course, if you know anything about me, I was also very heavy and there was no end in sight for my weight gain. It had nothing to do with willpower - the drug made me hungry and there was no controlling that. I had high blood pressure and my doctor told me that I would die an early death. Plain and simple. Early death. Weigh too much and there are health complications. They come. I had only gained the weight over a two or three year period and I was still young, so all I had was high cholesterol, high triglicerides, and high blood pressure.

I take a different drug nowadays, lost a lot of weight, eat differently, and am much more physically healthy.

What am I searching for in my art right now? Energy and madness. I anticipate when I lower my antipsychotic meds some more more energy and madness to show up in my artwork. My therapist likes to quote Emerson who said "Follow your genius." In his eyes everyone had their own unique version of genius. As an artist, my journey right now is "Follow your madness".

I don't think my meds nurse would understand. I'm afraid there is a serious breach of trust between us. I came to our visit prepared, I documented, and I was ignored. I felt bullied. She said that she would only feel comfortable prescribing medication within a theraputic zone of dosage. Currently the range for Geodone is 160mg to 120mg. I'm at 160mg down from an extraordinary high of 200mg. I've been at this level for over three months now and I'm happily stable. My meds nurse wanted me to wait until our next visit in March to lower my meds some more. I had planned to lower my dose to 120mg on January 1st. I don't know what to do. Should I do whatever I damn well please?

What is clear is that my meds nurse wants all her patients to be on medication and in a specific range. The person and their particular illness is not taken into consideration. Once I told her I was schizophrenic (she's never had any documentation from people who treated me in the past) she imagined me as a specific type of monster. The word schizophrenia suggested things to her I can't comprehend. But I don't make art like other schizophrenics, nor is my illness like other schizophrenics. Except that I'm disabled. No dispute. Mental disability. Mental fragility. Mental exhaustion every damn day.

All my meds nurse is interested in is prescribing medication. All I am interested in is producing art that I like. My meds nurse does not care about my fears, my dreams, except when they are potentially psychotic. She should wear a tee shirt that says "Kill psychosis." I know that some artists enhance their creativity by disordering the senses by means of hallucinogenic drugs or sleep deprivation. All I have to do to have altered senses is lower my medication. I've got schizoprhenia, which is richly perverse, energetic, and atypical in its manifestation in my artwork. I've tried looking like a mainstream artist. Now I'm looking in a different direction. Bonus points is that I bath my brain in less artificial chemicals that could cause brain shrinkage, age old dementia, and a strengthening of the positive and negative symptoms of schizophrenia. That's what the research from the Whitaker book I read suggest the drugs do. My therapist has warned me on acting from one source of information alone. But this nation is so drug happy, I don't know what to trust.

Today I painted a flugelheisthorn. My own invention. Yesterday I painted a curling trombone. My own invention as well. Tomorrow I paint a bass cello. Not much deviation from a cello. Tinkered with the idea of painting it purple, but so far, that idea hasn't won out. I'd rather suggest wood if possible. The colors of the brass instruments suggested brass.

I've got my moments of deep conservatism.

1 comment:

  1. Dear Karen,

    I figured that you would get some kind of opposition to your plan of action for gradually eliminating the drugs from your system, but I think that as long as you have some support from your husband and therapist (and anyone else you can enlist) that you should proceed with your experiment. I think you are brave for trying and sensible in your approach. In fact you are generally very perceptive about yourself and others. If you notice that you are sinking into delusional or suicidal feelings, I feel sure that you will voice it to yourself and those you know and here too. That's part of your strength -- your honesty.

    I agree with your therapist, we don't know why the medications help some people. My position is though that I don't know whether not taking my medications would be better or worse for me and I'm just starting to feel new life in my recovery that I don't want to change what is working for me. I don't want to risk losing the strength I am starting to feel. I also don't want to worry about going senile at age 70. Frankly, if I get to 70 I'll be pretty impressed with myself. Then I'm also of a mind that if something were really wrong with me physically, a debilitating disease or condition, I would want to take my own life with as much dignity as I could muster. I continue to think that euthanasia should be legal. Is it legal in Oregon? In parts of Europe? If so, I might go there to die if I had to. I just don't want to live my life fearful of dying a miserable death due to having taken the drugs. Sometimes it seems like it's all a gamble and some win and some lose, but ultimately we all lose. We all die though we live in denial of it most of the time. For me, it goes back to learning to value the present moment more and more. And on that dark to hopeful note I'll say....

    Have a wonderful Christmas Eve and Christmas Day!

    Carpe Diem!

    Love, Kate : )


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