Mark Vonnegut Speaks at Convention

NAMI (National Alliance on Mental Illness)
May 17, 2003
Mark Vonnegut, M.D.

Iím happy to be here. Thirty years ago I wrote a book about going crazy and have been trying to blend in ever since. Itís about time I came around to see what NAMI was all about. I donít rush into things.

Thirty-two years ago I was diagnosed with schizophrenia but with newer definitions my disease is more consistent with manic depression or bipolar disease, mostly because Iíve gotten better. These labels can be more trouble than they are worth. There are manic depressives who donít get well and look more and more like chronic schizophrenics as they go along. With the deck stacked against them, a considerable number of schizophrenics do get better. Until we have some unambiguous diagnostic test, we are all talking through our hats.

Whatever the diagnosis, the care for serious mental illness is in disarray. Meaningful leadership and reform in my opinion is more likely to come from patients and their families. The needs of patients and families dealing with manic depression, schizophrenia, autism, depression, substance abuse are very similar. We need a commitment to improving care and the means to do soÖ

Iíve been lucky. I received good care early, and have had a small number of episodes. Rather than a suicide or chronically disabled son, brother, friend, Iím what they cal A &W, alive and well. The turn around on the investment for recovery is substantial. Iím happily married, have a wonderful life and three strong handsome very smart sons who would not otherwise be. I could be dragging down a dozen or more people.

If nothing I say sparks any thoughts or identification, itís possible youíre taking too much medication. If itís the greatest talk youíve ever heard, youíre not taking enough.

There will be some tangential thinking and loose associations. Being crazy has had a definite effect on how I think. Not all of my good ideas are good.

Family history. My motherís motherís father was an alcoholic who I strongly suspect drank to keep the voices away. My grandmother was a very smart very accomplished woman who was in and out of psychiatric hospitals much of her adult life. She warned my mother not to marry my father because there was instability in his family. My fatherís mother who was addicted to barbiturates and wouldnít come out of her room for weeks at a time and who eventually killed herself on Motherís day, told him the same thing. Iím the fourth straight generation in my family of people who hear voices, have bizarre delusional thinking and hyper-religiosity. Weíve each saved the planet earth several times. My famous father Kurt is not manic depressive. Heís not particularly well, but he doesnít hear voices or get all pumped up.

My first episode was in 1971. I believe I would have gone crazy eventually regardless of outside events although they were very crazy times. The assassinations of JFK, MLK, RFK. Kent State, the music, the drugs, the counter cultureÖ My father was transformed from a not very good car salesman who couldnít get a job teaching English at Cape Cod C.C. to a guru super star. By the time I started hearing voices so many other unlikely things had happened it didnít seem out of line. I assumed everyone was hearing voices. To try to find out and so as to not appear unsophisticated, I remember sitting down next to someone and saying, ďSo what do your voices tell you?Ē

There are many people who fully recover from major psychotic episodes and go on to live full rich lives. Most of them choose to keep quiet about it. In the middle of my illness when I was far from sure that I would survive, I made a promise to remember and tell the truth about whatever it was that was happening to me. I think it helped. For me, remembering and trying to tell the truth is part of my defense against this disease.

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Thorazine, ECT, massive doses of vitamins, were the initial medical intervention tried on me. It should be noted that Iím a very positive person. Iíve responded positively to virtually everything thatís been tried on me. If you sprinkle happy dust on me, I get happy, at least for a little while. What I loved and continue to love about the medical model more than the actual medical means, is that itís hopeful. It lessens shame and blame.

Now, just about everyone accepts the medical model. We have more effective medications with fewer side effects. I should be happy but I find myself uncomfortable. More and more just about all the questions and all the answers about mental illness are about medication. Mental illness causes poverty and poverty causes mental illness. The same is true of trauma, prejudice, lack of education, lack of skills, loss of spiritual values. Learning how to live well in spite of your illness is at least as important as medication.

I saw a study the other day showing that some atypical anti-psychotic was at least as good as mood stabilizers in preventing suicide. Itís a very good thing to decrease suicide but we should care at least a little if Iím not killing myself because I feel better or if I just canít remember where I put the damn gun. I want patients and families to have more power. When the interests of patients and families are not perfectly congruent with those of the insurance and pharmaceutical industries, the patients will loose.

I would never advise patients to waste as much time as I do ranting and raving about the insurance and pharmaceutical industries. What is much more important is to make, for yourself, in your own terms, a clear distinction between yourself and your disease and where you want to go as opposed to where your disease wants to take you. Doctors, therapists, medications can only be helpful when they are helping you go where you want to go. Otherwise all the help is just a bunch of crap strewn around a messy room. The road to medical school started with a job mowing lawns I was far from sure I could handle.

People with mental illness are very much like people without mental illness only more so. What we loose with a psychotic episode is the comforting assurance that we canít loose our mind. When most people look down they see solid ground. When I look down, Iím no so sure.

Crazy thoughts are not the problem. Everyone has crazy thoughts. Hallucinations and delusions tend to catch the attention but arenít the problem. The problem is that the world becomes discontinuous. We canít attend to the world and take care of ourselves. So others try to take care of us and they do an imperfect job of it. There is no substitute for being well.

Patients and families should not be left to play one on one with big corporations and providers whose resources dwarf their own. Patients and families should not have to re-invent the wheel over and over.

Even though Iíve only had 4 psychotic episodes and I am now 17 years and 4 months from my last hospitalization, I still worry about it happening again. The bad news is that the worry doesnít go away. The good news is that worrying about your mental health doesnít have to stop you from having a full life. I comfort myself with the knowledge that Iím a hypochondriac in other areas. Headaches that last longer than an hour might be brain tumors. George Gershwin died of a brain tumor, why not me? Anxiety or chest pain might be a heart attack. Just because they havenít been yet, doesnít mean much, nor do the normal EKGís or stress tests Iíve had. Tests are often wrong. Doctors are all a bunch of miserable quacks avoiding their own problems by hanging out with sick people anyway.

My job was and remains, to be well enough to be able to politely dis-invite the beneficent attentions of others as many steps as possible prior to hospitalization and involuntary medications.

It was not easy to go from being one of the seven righteous pillars holding up the whole planet and human race to being just another mental patient. I remember talking to a woman who was ending racism and asking her if it was part of a bigger program or if racism was the whole deal. As someone who had gone back to the beginning of time and dealt with issues of whether or not life itself was a good idea, I wasnít sure that just getting rid of racism was a big enough prize.

When I got a good look at the inner workings of the universe and sadly realized that I couldnít go back to life on the planet earth knowing what I knew, the voices suggested that I could go back but it would have to be through a psychiatric hospital with the cover story that I was crazy. ďYa. Like whoís going to believe that?Ē

In the eighties when I was called out of retirement to defeat communism, it was over my strenuous objections. ďI donít even dislike communism all that much,Ē I objected. ďIt seems so beside the point.Ē ďThe Republicans are going to take credit for this and ride it into the ground,Ē I correctly predicted. After winning many many preliminary rounds which I honestly hoped Iíd loose, I was smuggled into what was thought to be just another psychiatric hospital where the Russian bear took one look at me, declined to dance, and the rest is history. My delusional world always felt kind of tinny and hollow, but that never helped me get out of it.

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As a form of gross overcompensation with a chip the size of Montana on my shoulder, I decided to try to go to medical school. I applied to 21 Medical Schools. Most rejected me by return mail, probably on the basis of my age and undergraduate grade point average. I didnít need a psychiatric diagnosis to be a questionable applicant to medical school.

I gave serious consideration to saving the $50 and not applying to Harvard at all. I honestly think that they admitted me partly to prove that I wasnít schizophrenic, partly because they thought Iíd be a good doctor, and partly just because theyíre Harvard.

Itís amazing that Iíve been through what I have and practice medicine. Today Iím glad I donít see any particular cosmic significance or purpose in these events. I just feel lucky. Today itís nice to be able to entertain odd thoughts without having to marry them all. Thank God. I can think whatever the hell I want. Entertaining odd thoughts wonít make you crazy. Refusing to entertain odd thought wonít make you well.

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During my recovery from my last episode a very wise friend told me that other peopleís business was not my business. I felt insulted that he bothered to tell me such an obvious thing. He then said that what other people thought about me wasnít my business. Harder but still not earth shattering. He then went on to say that what I thought wasnít really my business either, which has kept me puzzled ever since.

Iíve come to believe that Iím at my best and that itís a beautiful world when my feelings are like the weather and that what I think is not my business.

*

A surgeon during my core surgery rotation said that he knew who I was, but that he was going to treat me as if I were normal. I sincerely thanked him and said Iíd do my best to act that way.

Are people who have been crazy held to unfair standards?

Of course, but itís not in your best interest to complain. If youíre paranoid and people are looking at you funny itís best to let it pass. Psychotic people have an uncanny knack for making their own worst dreams come true. Depressing things happen to depressed people way beyond what you would expect from random distribution.

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I donít think the people today who start hearing voices, stop eating and sleeping, and run amuck are likely to get good treatment. Having more knowledge, better diagnostic capabilities, better medications with fewer side effects, canít make up for the fact that most patients are being treated by doctors, therapists, and hospitals, who are operating under constraints and incentives that reward non-treatment, non-hospitalization, non-therapy, non-follow-up, non-care. Lost to follow-up is the best outcome a health insurer can hope for.

I take Lithium and believe that it has saved my life. I wish I didnít need medication. Iím not wild about the tremor and think I might be 20 lbs lighter without Lithium, but what I really hate about medication is that it helps me, which means Iím not nearly as perfect as I wish I were. I should be able to maintain my mental health by the exertion of my amazing will.

Thereís a big difference between believing you can fly and flying. The romance about creativity and mental illness has come from the hard work of great artists struggling against the illness not giving into it. The best defense against the seduction that mental illness will make you creative, is to actually be creative. Please donít give the disease that tried to kill me credit for my writing and painting.

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Let me be clear that thereís no romance. I never want to dance that dance again. The more times your wheels go into that rut, the harder itís going to be to get out. I dread nothing more than the next break, and am certain of nothing more than that thereís nothing positive for me in the psychotic state.

You canít look at the paintings of Van Gogh, and other achievements of manic depressives without concluding that there are positive capacities associated with this illness. But those positives are AS A RESULT OF FIGHTING THE ILLNESS RATHER THAN GIVING IN TO IT.

What you do when you accomplish something is to say, ďbugger off disease.Ē This disease is never your friend.

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My illness, my enemy, is a valuable compass. I can usually figure out whether or not something is moving me closer to or further away from a break. And I can learn from others what things they think help defend them against the next break. The way to live a healthy life is to get a chronic disease and take good care of it.

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Itís alarming that someone like myself with such a pathetically underdeveloped respect for safety issues became a pediatrician. When asked by parents about car seats, I have to work at not letting it slip that I donít really care. I also canít stand it when mothers talk to their babies in high squeaky voices. Itís a true miracle Iíve lasted as long as I have.

Iím supposed to tell adolescents about high risk behaviors. I told one mother who asked me to give her son THE LECTURE, that if one more person told her son about sex, drugs, and alcohol, he was going to vomit. I told him I thought I should have posters on the wall saying:

ďIf youíre having trouble with decisions, smoke marijuana.Ē
ďSafe sex is better than no sex at all.Ē
ďDrink yourself into a black out whenever you can.Ē

This is all by the way of leading up to say that alcohol and drugs will almost make things worse for anyone recovering from mental illness but each may have to learn that for themselves.

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Itís possible within any given moment of any given day for me to choose between self and disease. I am rarely faced with big heroic choices that will settle the matter for once and for all, though the disease likes to tell me otherwise. I look for the smallest positive step. I try not to argue too much. If Iím right, I donít need to argue. If Iím wrong, it wonít help. If Iím OK, things will be OK. If Iím not OK, things donít matter.

Thank you for your time and patience.

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