The Eden Express (38 page)

Coffee is nearly always bad for schizophrenics. Grass, hash, and especially the hallucinogens and speed can be real trouble. Good old alcohol, interestingly enough, can be helpful in a pinch. A good many alcoholics are probably schizophrenics who drink to keep schizophrenia away. Don’t depend on it too much, however, as there are better ways and you could end up with two problems instead of one.

There is nothing permanent about any of these restrictions. As soon as you get yourself together, you can do whatever you like. I now have coffee occasionally, and could probably eat tons of sugar and smoke lots of dope with no worse effects than anyone else. But for now, give yourself every break you can.

 

Some of the literature I’ve sent you deals with orthomolecular therapy. It’s a cumbersome phrase which simply means restoring normal brain chemistry with high doses of vitamins and minerals, dietary adjustments, and, more recently, allergy desensitization. This approach focuses on making “normal” behavior possible rather than the usual attempts to make “crazy” behavior impossible.

Unfortunately, an up-to-date, comprehensive book on the subject does not exist. This is mostly attributable to rapid changes within the field and is usual for any new medical approach. But I think you would find these two books interesting:

How to Live with Schizophrenia
, by Abram Hoffer and Humphry Osmond (University Books, New Hyde Park, N. Y., 1966), may be hard to find but is well worth the effort. It is an excellent introduction to the field even though some of the technical information is out of date. The therapy available today has become considerably more sophisticated and individualized than the simple niacin and vitamin C regimen it describes.

The Schizophrenias, Yours and Mine
, by Carl C. Pfieffer (Pyramid Books, New York, 1970) contains some of the more recent work and is also very helpful.

 

There are a number of organizations that may be helpful. There are chapters of the American Schizophrenia Association in many states. The Huxley Institute, 1114 First Avenue, New York, N.Y. 10021, is an excellent source of information. Many of its pamphlets and reprints are quite good. The Institute will also be able to tell you what organizations are available in your area.

More and more doctors and clinics are using the orthomolecular approach, but they are still, especially the good ones, few and far between. Most of them are overworked and are booked solid for months in advance. At the moment, finding good orthomolecular treatment is a matter of patience, luck, and hard work. I hope that this will change soon.

 

Orthomolecular therapy is considered controversial by many doctors, but you have nothing to lose and possibly a great deal to gain by trying it. Many schizophrenics and many doctors have found vitamins highly effective, and the worst that critics have been able to say is that they don’t work. They don’t cost much, which means the worst you could do is waste a little money. The vitamins used are all water-soluble substances that your body is well accustomed to. The
dangers are very limited, as you will simply piss away anything you don’t need.

There are several problems with the vitamin approach, the principal ones being that it doesn’t work for every schizophrenic, and that with many of those it does work for the results are long in coming. I responded positively in a matter of weeks, and so do many others, but six months to a year for positive results is not uncommon. Many doctors involved with vitamin therapy freely admit that their treatment is far from what they wish it were, but it happens to be the best thing going at this point. Much more research is needed before we have any fast, easy answers to schizophrenia. Doctors using vitamin therapy don’t do so to the exclusion of other approaches. They are generally experts in drugs and other therapies and don’t hesitate to use them when called for.

While I very likely owe my life to Thorazine, I doubt if I will ever develop much affection for it or similar tranquilizers. They act very quickly and are invaluable in many situations, but have numerous unpleasant side effects. I don’t see them as an attractive long-term solution but more as a way to buy time for the vitamin, dietary, and other less coercive approaches. The heavy drugs can make your illness somewhat less troublesome to yourself and a lot less troublesome to others, but what I like so much about the vitamin approach is its utter lack of coerciveness. If your body doesn’t feel the need for a vitamin, it simply gets rid of it. Things aren’t so simple with substances like Thorazine, which it’s unaccustomed to. There is no way the vitamins can be an infringement on your individuality. They simply make sure your body gets whatever raw materials it wants.

 

Suicide is a very real danger. It may sometimes seem like a rational choice. I tried to kill myself a number of times, but was luckily so screwed up I couldn’t do a decent job of it. I had heard that schizophrenia
was incurable, which is most definitely untrue. I would much prefer death over life with my head in such desperately bad shape. It’s very possible to recover, and you must try very hard not to lose sight of that.

 

Anita, I’m not sure what your financial shape is at this point, but if your parents are in a position to help you, this is no time to get proud. Your primary responsibility at this point is getting well. Most jobs involve anxiety, which can very easily set you back. Any short-term money you might make just isn’t worth the risk. The best way to insure your not being a financial burden is to accept the fact that you can’t support yourself now and concentrate on getting well.

Part of why I cracked as often and as hard as I did was my refusal to give myself many breaks. Every time my head cleared for as much as ten minutes, I believed myself completely cured and ready to take on the world. I found the notion of being recuperative or giving myself any special allowances abhorrent. A lot of that is due to the deceptive nature of schizophrenia. One day you’re fine, the next you’re clutching your knees trying to hold on. And there’s no simple reminder of what you can and can’t do, like that arm in a cast. The best general advice in terms of diet, social activity, or whatever is simply to notice what affects you badly, and to be utterly unabashed about avoiding it.

Friends and family can be enormously helpful as long as they understand what’s going on. Here again the biochemical model is invaluable. Instead of tiptoeing around, afraid of saying the wrong thing, dreading that they somehow drove you crazy, making feeble stabs at amateur psychotherapy, nervously checking out everything you do or say to see if it’s “crazy,” friends and family who understand that the problem is a medical one usually become excellent allies. Besides companionship, they can help you keep to good eating and
sleeping habits, protect you from unwanted stimulation, and look out for your interests in countless other ways.

 

As well as being one of the worst things that can happen to a human being, schizophrenia can also be one of the richest learning and humanizing experiences life offers. Although it won’t do much toward improving your condition, the ins and outs of your bout with schizophrenia are well worth figuring out. But if you concentrate on getting well for now, and come back to puzzling things out later, I guarantee you’ll do a better job of it. Being crazy and being mistaken are not at all the same. The things in life that are upsetting you are more than likely things well worth being upset about. It is, however, possible to be upset without being crippled, and even to act effectively against those things.

There are great insights to be gained from schizophrenia, but remember that they won’t do you or anyone else much good unless you recover.

Take care,
Mark

The events described in this book took place nearly twenty years ago. Some things have changed. The notion that mental illness has a large biochemical component is no longer very radical. Things have come full circle to the point where it’s unusual to hear anyone say that mental illness is all mental. The view that going crazy is caused by bad events in childhood and that talk and understanding offer the best hope for a cure seems very out-of-date. This is a change for the better, though it has by no means brought an end to the shame, blame, and guilt that continue to compound the suffering of the mentally ill and their families.

The clinical definition of schizophrenia has been changed. Under the old definitions there was considerable ambiguity about what to call people like me. Under the new definitions I would be classified as manic depressive rather than schizophrenic. I wasn’t sick for very long and I didn’t follow a downhill course, both of which are required by the new definitions to diagnose someone as schizophrenic. While it’s tempting to dismiss this as an insignificant change in labels and be more than a little irritated that they went and changed the rules after I built a book around the old definitions, I have to admit that this, too, is probably a positive change. It should mean that fewer people with acute breakdowns will be written off as hopeless. Eventually someone will develop a simple blood test that will sort out who has what disease and what treatments should work. In the meantime we’re stuck
with arguing about labels and indirect evidence as the best way we have of approaching useful truths about how to help people.

There are probably a dozen or so separate diseases responsible for what we now call schizophrenia and manic depression. Until the definitive work is done, many things are plausible and almost anything is possible. This lack of certainty makes mental illness wonderful ground for intellectual speculation and absolute hell for patients and their families.

At the time I wrote my book I felt that the large doses of vitamins with which I was treated, along with more conventional approaches, had a great deal to do with my recovery. It was my hope that many people diagnosed as schizophrenic would get better if only their doctors would become more open-minded and treat them with vitamins. Since that time I’ve seen people with breakdowns like mine recover every bit as completely as I did without vitamin therapy. I’ve seen many cases where vitamin therapy didn’t make any difference and a lot of cases like mine where it’s hard to say exactly what did what.

I continue to feel a great deal of affection for the doctors who treated me. They were good doctors, with or without vitamins, which they saw mostly as something that couldn’t hurt and might help. I continue to feel that the debate over whether or not vitamins might have a role in the treatment of some forms of mental illness has been miserably handled by both sides.

What I can no longer continue to do is to maintain that the vitamins played a major role in my recovery. I have not changed the text of my book because I think it should stand as I wrote it. I remain very proud of the book but if I could have one line back I’d delete “The more the vitamins took hold…” (p. 282). I’d also drop the paragraphs dealing with how to find out more about the vitamin therapy in the postscript.

Life has been good to me. I made it into and through medical school and managed to enjoy myself most of the time. I’m a pediatrician and I continue to find it very congenial, rewarding work. I have two healthy sons and am still in love with my wife. I’m surprised how much I care about the Red Sox.

I still think a fair amount about the sixties and trying to be a good hippie. I’m under no illusion that I understand exactly what was going on back then, but there are a few things that need saying. We were not the spaced-out, flaky, self-absorbed, wimpy, whiney flower children depicted in movies and TV shows alleging to depict the times. It’s true that we were too young, too inexperienced, and in the end too vulnerable to bad advice from middle-aged sociopathic gurus. Things eventually went bad, but before they went bad hippies did a lot of good. Brave, honest, and true, they paid a price. I’m sure no one will ever study it, but my guess is that there are as many disabled and deeply scarred ex-hippies as there are Vietnam Vets.

When all is said and done, the times were out of joint. Adults as much as said they didn’t have a clue as to what should be done and that it was up to us: the best, bravest, brightest children ever to fix things up. We gave it our best shot, and I’m glad I was there.

After writing
The Eden Express
, Mark Vonnegut went to Harvard Medical School and then completed his Pediatric Internship and Residency at Massachusetts General Hospital. He has been a primary-care pediatrician for the past twenty years and has his own practice in the Boston area. He continues to write but feels very blessed to have been able to make his living as a pediatrician rather than as a writer. Having been seriously mentally ill, he is grateful for opportunities to be useful.

He lives with his wife and their four-month-old son, Mark Oliver, in Milton, Mass. He has two grown sons, Zachary and Eli, from a previous marriage.

Copyright © 1975 by Praeger Publishers, Inc.

Foreword copyright © 2002 by Kurt Vonnegut
Preface to this edition copyright © 2002 by Mark Vonnegut

 

FIRST SEVEN STORIES PRESS EDITION

 

Originally published in 1975 by Praeger Publishers, Inc., New York.

 

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