NAMI
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 planed 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. Kent State, the music, the drugs, the counter
culture… My father, was transformed from a not very good car salesman who
couldn’t 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
didn’t 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, “So what do your voices tell you?”
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 a 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
lean 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.