Flowers and Fish, 2005
(Painting by Mark Vonnegut)
Just Like Someone Without Mental Illness Only More So is a work of nonfiction. Some names and identifying details have been changed.
Copyright © 2010 by Mark Vonnegut, M.D.
All rights reserved.
Published in the United States by Delacorte Press, an imprint of The Random House Publishing Group, a division of Random House, Inc., New York.
DELACORTE PRESS is a registered trademark of Random House, Inc., and the colophon is a trademark of Random House, Inc.
Library of Congress Cataloging-in-Publication Data
Vonnegut, Mark.
Just like someone without mental illness only more so: a memoir / Mark Vonnegut.
p. cm.
eISBN: 978-0-440-33977-9
1. Vonnegut, Mark. 2. Pediatricians—Massachusetts—Boston—Biography. 3. Schizophrenics—Massachusetts—Boston—Biography. 4. Children of celebrities—Massachusetts—Boston—Biography.
I. Title.
RJ43.V66A3 2010
618.92’8980092—dc22 2010009765
[B]
www.bantamdell.com
v3.1
The other day I found the final version—along with several drafts—of the note below:
Dear Santa,
Can you please get me the large set of Pickett’s Charge (soldiers, horses, cannons, fences, trees, and a hill)?
From Oliver
Living with a seven-year-old who asks Santa for a 470-piece Civil War battle replica play set is a great joy and privilege. Yesterday he asked me, “So what happened to the slaves after the Emancipation Proclamation?”
This book is dedicated to all seven-year-olds … and their seven-year-olds and their seven-year-olds and so forth and so on.
Contents
Cover
Title Page
Copyright
Dedication
A Note on the Title
Introduction
chapter 1
A Brief Family History
chapter 2
Raised by Wolves
chapter 3
The Coming of the Orphans
chapter 4
Hippie
chapter 5
Retooling
chapter 6
Bow Wow Boogie
chapter 7
Medical School
chapter 8
Man’s Greatest Hospital
chapter 9
Crack-up Number Four
chapter 10
Coming Home
chapter 11
Honduras
chapter 12
Not Right for Here
chapter 13
Short Chapter …
chapter 14
The Myth of Mental Wellness
chapter 15
Bricks and Lobsters
chapter 16
The Rope
chapter 17
There’s Nothing Quite as Final as a Dead Father
chapter 18
Mushrooms
About the Author
A Note on the Title
When I talk to the National Alliance on Mental Illness (NAMI) and other patient support groups, I take questions at the end. At one talk I was asked, “What’s the difference between yourself and someone without mental illness?”
At another talk I was asked, “How do you make the voices be not so mean?”
I wish I knew.
Introduction
I’ve gotten used to it, but very little about my life has been likely. In my early twenties I stopped being able to eat or sleep. I heard voices, went up against locked doors, was given a lot of medication, and lost my confidence that going crazy was something that happened to other people. It would have made perfectly good sense for me not to have done well and maybe have ended up killing myself after x number of relapses. Everyone would have adjusted. But I recovered enough to be able to think about what I would have wanted to become if it wasn’t for the sixties and mental illness. I wanted to be a doctor and applied to twenty medical schools. It was a round number.
It would have been utterly unremarkable for all twenty to have said no. That the one that said yes was Harvard is either a miracle or a very funny joke.
Luck and circumstances make us as different from who we might have been as cats are from dogs and birds are from bugs. There must be a point in paying attention to what goes on. My father’s fame falls into the one-in-a-zillion category. Had I told someone after my first series of breaks that I might go to Harvard Medical School, they would have upped my meds and canceled my dayroom privileges.
I’ve had the bad luck to get sick four times and the remarkable good luck to get better again each time. None of us are entirely well, and none of us are irrecoverably sick. At my best I have islands of being sick. At my worst I had islands of being well. Except for a reluctance to give up on myself there isn’t anything I can claim credit for that helped me recover from my breaks. Even that doesn’t count. You either have or don’t have a reluctance to give up on yourself. It helps a lot if others don’t give up on you. Had I been a little sicker a little longer or taken a little longer to get better, I never could have applied to, let alone gotten into, medical school. I managed to get well in the nick of time, by the skin of my teeth, needing every ounce of every resource I had.
And if you’re lucky enough to survive going crazy and get back to the point where you can pass for normal, it builds a question into the rest of your life. You have to forgive people for wondering, “How all right can he be?”
After my fourth break, fourteen years after the first three, when everything was supposed to be okay because I had graduated from medical school and was a respected physician in the so-called real world but I fell apart anyway, my task was, once again, to get my sorry, sick, humiliated self back together as quickly as possible. Because if I didn’t stand up and do a credible job of walking and talking, my license and job would have been up for grabs, and then how would I be able to tell if I was okay?
——
My psychotic episodes start out great. As a reward for diligence, patience, and the refusal to accept lesser gods, I am set free. We’re all one, really and truly one, free at last, blissfully overwhelmed by God’s boundless love. There’s peace and universal brotherhood. There’s no need to wait for the other shoe to drop.
And then, a few weeks later, ten or twenty pounds lighter, I’m foggily embarrassed in a cold world with things that need doing, like figuring out if I can still be a doctor and how to explain mental illness to my young children.
There were crazy people in my family, but I had figured out good and sound reasons why I wouldn’t go that way. I was stronger than that. But then there were three breaks in quick succession in 1971. I was diagnosed as suffering from schizophrenia. With the publication of the third edition of the Diagnostic and Statistical Manual of Mental Disorder (DSM III) in 1980, the diagnosis of schizophrenia was made more standard and required continual symptoms for at least five years. What I had and have is more consistent with what is now called bipolar disorder, which used to be called manic depression. The name change was an effort to get away from the stigma around the diagnosis of manic depression. Good luck.
Until we come up with an unequivocal blood test or the equivalent, we’re all blowing smoke and don’t know if what we call schizophrenia and bipolar disorder are one disorder or a dozen.
Break number four, in 1985, came as a complete surprise and taught me once and for all that what I think is and isn’t going to happen doesn’t count for much. My fr
iends and family and psychiatrist all think I’m doing well and won’t go crazy again, and I appreciate their optimism.
In the middle of break number one, I made a lot of promises. When I promised to try to remember to tell the truth, it seemed to help.
It’s now been almost twenty-five years since my last break. It was a matter of faith that I could go to medical school and do a pediatric internship and residency and that it would turn out okay. I’ve had a good run as a pediatrician. I’m happily married and have three healthy sons, but I’ll never fully shake the feeling that I’m being tracked by the voices and a parallel psychotic life.
“You didn’t really think you could lose us, did you?”
PRACTICE, PRACTICE, PRACTICE
Most adults have forgotten what they had to do to survive childhood.
I’ve spent most of my professional life thinking about how to improve and safeguard the health of children, studying what others have figured out about their major and minor ailments and trying to cram this knowledge into the day-to-day work of a pediatric practice. It’s been a privilege to watch my patients and their parents closely to see what works and what doesn’t work.
If you had told me ten years ago that today my patients would routinely have to wait eight-plus hours in an emergency room to get not-very-good care, that every day my staff and I would spend hours arguing and doing paperwork to have my patients get basic medications, that there would be six-month waits to see specialists, again with the blizzard of paperwork, and that psychiatry would be essentially unavailable for children, especially ones with mental health problems, I would have asked what backward third-world country we were living in.
When I open the office on Sundays to see acutely sick kids, it takes my wife at least twice as long to check a patient in and verify insurance information as it takes me to diagnose and treat the problem. There’s an excellent chance even with all that checking that the insurer will find a way to not pay. Medical care has become a lot of crust and precious little pie.
PHYSICAL SIGNS
If I know their parents and siblings and cousins, I can look at someone with Down syndrome and see who he would have been if not for the split-second failure of chromosome 21 to separate from its copy. The disease is like a transparency. Separating out who and what a person is and what a disease is doing is much easier with acute illnesses and if you know the patient. In an otherwise well child, lobar pneumonia sticks out like a sore thumb. The longer a disease has to become part of a person, the harder it is to tease out. My job is to be an optimist and see people as potentially better than they are, and their problems as possibly removable overlays, as in “He’s a really great kid but he has a drug problem.” It’s also my job to tell the truth when there are things that aren’t going to get better.
I want my young hands back, the ones that don’t shake so much. The tremor that I’ve lived with my whole life is worse because I take lithium and drink coffee and am older. It’s my tremor more than being sixty-two or anything else that lets me know I won’t be able to do what I do now forever. It’s embarrassing to reach a stethoscope forward and have it shake against the patient and have to use two hands to steady the damn thing.
I’ve learned how to examine children without making them cry. I know how to quiet crying babies. I know that most blood tests, most referrals, and most medications are unnecessary. I don’t want my patients and parents taken advantage of. It is not a matter of great importance whether or not a given child has an ear infection. She will likely get better with or without help. But it is important that the person diagnosing the ear infection be doing so competently and honestly.
There’s an unfortunate hustle built into medical care, which favors doing things over not doing things. Most medical care is delivered by a provider who doesn’t know the patient and will never see him again. Doing things is more comfortable than not doing things. Doctors have much more at stake in their relationships with insurers and business managers than in their relationships with patients.
I worry more about patients now than I did when I was younger. Now a sick-looking child with a sky-high fever or a funky heart murmur I didn’t hear before doubles my pulse and makes me a little nauseous. I am confident that I can sink my teeth into any pediatric problem and hold on till the damn thing gives up, but that’s different from feeling like Clint Eastwood, the way I used to. Maybe I was unnaturally calm when I was younger and I’m paying for it now. A calmness debt.
It would help if I was a step back from the action, maybe in a tweed coat or corduroy jacket. At sixty-plus I didn’t expect to still be wrestling the terrified, swabbing the throats, being peed and thrown up on, and giving shots. I expected to have taken up a more gentlemanly position.
There are now a million templates and decision trees and practice guidelines, the underlying intent of which is to make medical care idiot-proof. Anyone with half a brain can check off boxes, and the pattern of the checked boxes tells you what the patient has and what to do about it. The problem with templates and clinical guidelines is that patients without asthma get crammed into asthma templates. Providers are rewarded financially and otherwise for small lies that make the templates and guidelines come out right.
Medicine can’t be made idiot-proof because idiots will always find a way to start or end up in the wrong place. The doctor gets credit for a 99214 ICD-9 493.10 and will be paid for such, with a bonus payment for asthma management under the quality-improvement asthma initiative. Unfortunately asthma might or might not have had much to do with what was bothering the patient. It’s amazing how well you can get paid for doing a crummy job.
There is something very pure—and easy to screw up—about trying to do the right thing without doing harm. Medical care has become a minefield of incentives that distort that purity. In some settings, revenues can be dramatically “enhanced” by ordering X-rays and tests or even doing unnecessary surgery. In other settings, providers can be penalized for ordering tests or making referrals. A doctor whose productivity incentives demand that he see four to six patients an hour delivers different care from one setting her own pace. A doctor under time pressure is more likely to come up with a quick diagnosis and treatment. Checklists and productivity goals become proxies for care. The proxies are what you get paid for, and the care goes to hell.
I want needlepoints on my wall that read:
The less you have wrong with you, the longer it will take me to find it
It’s faster and much more profitable to do a test than to explain why it’s not necessary
Beware of what you get paid for
If medical care makes people poor and dependent, it’s no different from cancer, whooping cough, or malaria.
Sometimes for me to get a stethoscope to the chest or push a tongue down or to move the earwax out of the way to see the eardrum is an epic struggle like the one described in Jack London’s story “To Build a Fire.” Sometimes I’m saving the world. Sometimes I’m just trying to see the damn eardrum. Sometimes by trying to see the damn eardrum I’m saving the world.
Of course I’m trying to save the world. What else would a bipolar manic-depressive hippie with a BA in religion practicing primary-care pediatrics be up to? If the saving-the-world stuff doesn’t work out, I have steady work and a decent income.
Young Jane and Kurt with me, circa 1948
(Vonnegut family photo)
chapter 1
A Brief Family History
It’s good to have a sixth gear, but watch out for the seventh one. If you think too well outside the box, you might find yourself in a little room without much in it.
The arts are not extracurricular.
One hundred thirty-nine years ago, my great-grandfather Bernard Vonnegut, fifteen years old, described as less physically robust than his two older brothers, probably asthmatic, started crying while doing inventory at the family hardware store. When his parents asked what was wrong, he said he didn’t know but he thought he wanted to be an a
rtist.
“I don’t want to sell nails,” he sobbed.
Maybe his parents should have beaten him for being ungrateful, but they wanted their son to be happy and the business was successful enough that they could hire someone else to do inventory. He became an apprentice stonecutter and then went to Europe to study art and architecture. He designed many buildings in Indianapolis that still stand today. He drew beautifully, made sculptures and furniture. He was also happily married and had three children, one of whom was Kurt senior, my grandfather, who was known as “Doc” and who also became an architect. Doc could also draw and paint and make furniture. He made wonderful chessboards, one of which he gave to me when I was nine.
When he was sixty, Doc was pulled over for not stopping at a stop sign. The cop was astonished to notice that his driver’s license had expired twenty years earlier.
“So shoot me,” said Doc.
At the end of his life, which had included financial ruin in the Great Depression, his wife’s barbiturate addiction and death by overdose, and then his own lung cancer, Doc said, “It was enough to have been a unicorn.” What he meant was that he got to do art. It was magic to him that his hands and mind got to make wonderful things, that he didn’t have to be just another goat or horse.
When I worked on the Harvard Medical School admissions committee, artistic achievements were referred to as “extras.” The arts are not extra.
If my great-grandfather Bernard Vonnegut hadn’t started crying while doing inventory at Vonnegut Hardware and hadn’t told his parents that he wanted to be an artist instead of selling nails and if his parents hadn’t figured out how to help him make that happen, there are many buildings in and around Indianapolis that wouldn’t have gotten built. Kurt senior wouldn’t have created paintings or furniture or carvings or stained glass. And Kurt junior, if he existed at all, would have been just another guy with PTSD—no stories, no novels, no paintings. And I, if I existed at all, would have been just another broken young man without a clue how to get up off the floor.
Just Like Someone Without Mental Illness Only More So Page 1