NAMI (National
May 17, 2003
Mark Vonnegut, M.D.
I’m happy to be here. Thirty years ago I wrote a book about going crazy and
have been trying to blend in ever since. It’s about time I came around to see
what NAMI was all about. I don’t 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 I’ve gotten better. These labels can be more trouble
than they are worth. There are manic depressives who don’t 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 so…
I’ve 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,
I’m what they cal A &W, alive and well. The turn around on the investment for recovery is substantial.
I’m 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, it’s possible you’re
taking too much medication. If it’s the greatest talk you’ve ever heard, you’re
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 mother’s mother’s
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 father’s mother who
was addicted to barbiturates and wouldn’t come out of her room for weeks at a
time and who eventually killed herself on Mother’s day, told him the same
thing. I’m the fourth straight generation in my family of people who hear
voices, have bizarre delusional thinking and hyper-religiosity. We’ve each
saved the planet earth several times. My famous father Kurt is not manic
depressive. He’s not particularly well, but he doesn’t 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.
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.
*
Thorazine,
ECT, massive doses of vitamins, were the initial
medical intervention tried on me. It should be noted that I’m a very positive
person. I’ve responded positively to virtually everything that’s 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 it’s 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. It’s a very good thing
to decrease suicide but we should care at least a little if I’m not killing
myself because I feel better or if I just can’t 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 can’t loose our mind. When most
people look down they see solid ground. When I look down, I’m no so sure.
Crazy thoughts are not the problem. Everyone has crazy thoughts. Hallucinations
and delusions tend to catch the attention but aren’t the problem. The problem
is that the world becomes discontinuous. We can’t 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 I’ve 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 doesn’t go away. The good news is that worrying
about your mental health doesn’t have to stop you from having a full life. I
comfort myself with the knowledge that I’m 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 haven’t been yet, doesn’t mean much, nor do the
normal EKG’s or stress tests I’ve 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 wasn’t 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 couldn’t 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. “Ya. Like who’s going to believe that?”
In the eighties when I was called out of retirement to defeat communism, it was
over my strenuous objections. “I don’t even dislike communism all that much,” I
objected. “It seems so beside the point.” “The Republicans are going to take
credit for this and ride it into the ground,” I correctly predicted. After
winning many many preliminary rounds which I honestly
hoped I’d 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.
*
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 didn’t 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 wasn’t
schizophrenic, partly because they thought I’d be a good doctor, and partly
just because they’re Harvard.
It’s amazing that I’ve been through what I have and practice medicine. Today
I’m glad I don’t see any particular cosmic significance or purpose in these
events. I just feel lucky. Today it’s 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 won’t make you crazy. Refusing to entertain odd
thought won’t make you well.
*
During my recovery from my last episode a very wise friend
told me that other people’s 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 wasn’t my business. Harder but still not earth
shattering. He then went on to say that what I thought wasn’t really my
business either, which has kept me puzzled ever since.
I’ve come to believe that I’m at my best and that it’s 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 I’d do my best to act that way.
Are people who have been crazy held to unfair standards?
Of course, but it’s not in your best interest to complain. If you’re paranoid
and people are looking at you funny it’s 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.
*
I don’t 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, can’t 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 didn’t need
medication. I’m 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 I’m 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.
There’s 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 don’t give the disease that tried to kill me
credit for my writing and painting.
*
Let me be clear that there’s no romance. I never want to
dance that dance again. The more times your wheels go into that rut, the harder
it’s going to be to get out. I dread nothing more than the next break, and am
certain of nothing more than that there’s nothing positive for me in the
psychotic state.
You can’t 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, “bugger
off disease.” This disease is never your friend.
*
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.
*
It’s 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 don’t really care. I also can’t stand it when mothers
talk to their babies in high squeaky voices. It’s a true miracle I’ve lasted as
long as I have.
I’m 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:
“If you’re having trouble with decisions, smoke marijuana.”
“Safe sex is better than no sex at all.”
“Drink yourself into a black out whenever you can.”
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.
*
It’s 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 I’m right, I don’t need to argue. If I’m wrong, it won’t help. If I’m OK, things will be OK. If I’m not OK, things don’t matter.
Thank you for your time and patience.