Inspiring Successes and Sad Suicides: A Conundrum

These last few days have been filled with contradictions.

My friend, Elyn Saks, the author of The Center Cannot Hold: My Journey Through Madness, has done us a huge favor by publishing an excellent article in The New York Times.

THIRTY years ago, I was given a diagnosis of schizophrenia. My prognosis was “grave”: I would never live independently, hold a job, find a loving partner, get married. My home would be a board-and-care facility, my days spent watching TV in a day room with other people debilitated by mental illness. I would work at menial jobs when my symptoms were quiet. Following my last psychiatric hospitalization at the age of 28, I was encouraged by a doctor to work as a cashier making change. If I could handle that, I was told, we would reassess my ability to hold a more demanding position, perhaps even something full-time.

Then I made a decision. I would write the narrative of my life. Today I am a chaired professor at the University of Southern California Gould School of Law. I have an adjunct appointment in the department of psychiatry at the medical school of the University of California, San Diego, and am on the faculty of the New Center for Psychoanalysis. The MacArthur Foundation gave me a genius grant.

Although I fought my diagnosis for many years, I came to accept that I have schizophrenia and will be in treatment the rest of my life. Indeed, excellent psychoanalytic treatment and medication have been critical to my success. What I refused to accept was my prognosis.

Conventional psychiatric thinking and its diagnostic categories say that people like me don’t exist. Either I don’t have schizophrenia (please tell that to the delusions crowding my mind), or I couldn’t have accomplished what I have (please tell that to U.S.C.’s committee on faculty affairs). But I do, and I have. And I have undertaken research with colleagues at U.S.C. and U.C.L.A. to show that I am not alone. There are others with schizophrenia and such active symptoms as delusions and hallucinations who have significant academic and professional achievements.

…It is so distressing when doctors tell their patients not to expect or pursue fulfilling careers. Far too often, the conventional psychiatric approach to mental illness is to see clusters of symptoms that characterize people. Accordingly, many psychiatrists hold the view that treating symptoms with medication is treating mental illness. But this fails to take into account individuals’ strengths and capabilities, leading mental health professionals to underestimate what their patients can hope to achieve in the world.

I first met Elyn when we appeared together on the PBS program,  Minds on the Edge. Of course, I felt I already knew her because I had read her book.  We became friends when she invited me to speak at USC to law students. She is graciously using funds that she receives as a MacArthur genius to support the Saks Institute for Mental Health Law, Policy and Ethics.

Elyn is inspirational, courageous and an excellent example of how someone with schizophrenia can excel. My friend, Fred Frese, is another person with schizophrenia whose achievements are well-worth noting. We need to publicize their stories. Bravo to Elyn!

At the same time I was reading Elyn’s editorial, I received troubling calls from two friends, both psychiatrists  Each had lost patients to suicide. Both of the deceased were young men who used handguns to end their lives. My friends were understandably distraught.

All doctors, I assume, eventually must deal with the death of a patient. But I suspect the sting is especially biting for a psychiatrist, given that part of a good psychiatrist’s task is getting to know each patient intimately.  My friends were invited to the funerals. One declined, explaining that she couldn’t bear it. The other went and was welcomed warmly by the family. She was taken into the funeral home’s inner sanctum where she was allowed to say goodbye to her patient before the casket was closed and readied for the memorial service. The deceased man’s mother thanked my friend for being such a caring doctor. Even though her son had taken his own life, the woman assured my friend that she had greatly helped him.

My friend left sobbing.

Dr. Darold Treffert, who serves on the Dorothea Dix Think Tank with Elyn and me, was the first to tell me ‘the rule of thirds.’

The rule of thirds, as it is called, goes back many years but echos my experience. If you google schizophrenia rule of thirds some references come up. To some degree it has been replaced by the rule of quarters based on formal 10 year or 30 year follow-ups. You can find more about that in Dr. E. Fuller Torrey’s Surviving Schizophrenia book. Whether 1/3 or 25% the fact is that a number of patients with first time psychosis do recover fully in the true sense of that word (I have a number of such cases) but others ‘recover’ less fully…..
     Here is what Dr. Torrey wrote in his book:
For individuals hospitalized with schizophrenia for the first time, the outlook at the end of one year is reasonably optimistic…The extended prognosis for schizophrenia is less optimistic than this one-year outcome. From the early years of this century, it has been said that there is a ‘rule of thirds’ determining the possible courses in schizophrenia: a third recover, a third are improved, and a third are unimproved…
Because of advancement in treatment, the ‘rule of thirds’ is less accurate today than it once was, Dr. Torrey notes. More recent studies suggest that:
  25% recover completely, with 35%  much improved and living independently, 15% improved but requiring extensive support, 10% requiring hospitalization and 15% dead (mostly suicides.)
What do we make of these different outcomes — the success of Elyn and Fred and the suicides of two young men? Several thoughts come to mind.
 Getting help as soon as possible greatly improves the chances of a person getting better. (I was told this about my son’s bipolar disorder as well.)

Hope is essential to recovery. We should never rob anyone of hope. We are poor judges of an individual’s ability to recover. If we want to help people, we must believe that everyone can and will get better.

The fact that the  ‘rule of thirds’ is now the ‘rule of quarters’  shows progress can be made. There is reason to think we can further reduce those averages with research and better treatment.

However, we should not let our enthusiasm, determination and optimism blind us to the fact that not everyone is going to recover. We should not shun, blame, criticize, denigrate or abandon those who don’t. Instead, we need to provide them with decent housing and intensive services, knowing that we may not be able to save everyone but we can do nothing less than to try.

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

  • Joann

    I so needed to read this today! Thank you.

  • Susan I

    We can do nothing less than to try and we SHOULD do nothing less than to try. Thank you for for always being such a champion for those suffering with the physical, social, psychological and emotional effects of mental illness.

    • Skylark

      I will hold out to not give up. A mind is a terrible thing to waste. And not one of us, even the doctor with three degrees, knows the limits of the human mind. Hope is the magic by which all cures begin..

  • Chr2495

    Elyn Saks story needs to be told to every correctional and judicial institute in the country.  The severely mentally ill can and do get well but not in a correctional setting who’s only intention is to ware house inmates for their own convenience    Elyn at one time too had violent ideations that  could have landed her in prison.  

  • Terri

    I am going to buy & read Elyn Saks book.
    Thanks Pete!
    Terri

  • You,too

    Its true – many with mental illnesses are geniuses or close to it. This fact needs to be publicized. People like Elyn and Fred, who have recovered so well, have a huge responsibility I would love to see both of them, and other bright managers of personal mental illnesses, speak before Congress on issues like mental health care. Because there is no known cure or perfect treatment for mental illness, the folks who are LIVING w/ it SUCCESSFULLY, have a moral duty to SHARE what
    they know about RECUPERATION. Mental illness ranks in the top Five of the most devastaing, ruinous, and painful illnesses known to humans. It is IMPERATIVE that any and all who live successfully with it, genius or not, GET their INFORMATION and their STORIES OUT THERE, TO HELP OTHERS WHO
    ARE SUFFERING.  40% of schizophrenics die without ever recovering. No other disease can boast of that. Not cancer, diabetes, AIDS, heart disease. Mental illness tops out worldwide as the number one consistent killer because its causes and preventatives,( thouroughly researched for other diseases), are scant ignored, in lieu of drugs that mask symptoms like a bandaid, while the illness rages on. There is no excuse for the gross lack of useful timely research in this wealthy country..
    If it were 40% of the rich with a terminal disease, it would be cured in a hearbeat. Think about it.  

  • jas

    I’m going to buy Ellen’s book & recommend it to everyone.  I already recommend Pete’s website to everyone. I also spread the word about “Minds on the Edge.”  Every politican & law maker should see this show.  Thanks to all of you who champion the issues and needs for the mentally ill.

  • jas

    I’ve started reading “The Center Cannot Hold” and it’s an absolute must read.  It’s enlightening, informative, extremely helpful… it’s opening my mind up and helping me deal with my brother’s paranoid schizophrenia.  He’s had it for 20 years now, and I’m just so worn out… This book is exactly what I needed now to help me regain and have renewed hope and strength.  Thank you Elyn for writing this book…. and to all those who write, speak and dedicate their time and lives to educate us all, to inspire us and to give us the strength to go on.  Thank you so much.