A Recovery Blog

This blog is about my continuing recovery from severe mental illness and addiction. I celebrate this recovery by continuing to write, by sharing my music and artwork and by exploring Buddhist and 12 Step ideas and concepts. I claim that the yin/yang symbol is representative of all of us because I have found that even in the midst of acute psychosis there is still sense, method and even a kind of balance. We are more resilient than we think. We can cross beyond the edge of the sane world and return to tell the tale. A deeper kind of balance takes hold when we get honest, when we reach out for help, when we tell our stories.

Saturday, February 20, 2010

E. Fuller Torrey, M.D. -- A Wounded Zealot

I bought the book Surviving Schizophrenia: A Manual For Families, Consumers, And Providers by E. Fuller Torrey, M.D. (4th edition) sometime after the year 2001. In the fall of 2001 I had returned to art school, but was not taking any anti-psychotic medications. At first I was doing quite well, but by the end of the semester I had crashed into my last psychotic break. By the beginning of 2002, I was committed to taking the medications. I bought the book at a Border's bookstore in Rochester. I was drawn to the title because that's what I wanted, to survive the illness. I opened to the first chapter; it was called Dimensions Of The Disaster, not Dimensions of the Illness, or Problem or Puzzle, but Dimensions of DISASTER. Disaster conjures up visions of tornadoes, tsunamis, earthquakes and in it's wake destruction and death. And at that point in my life, I could accept that pronouncement because I had just survived for the third time in three years, something disastrous--a psychotic break with reality. As I skimmed through the book, it seemed to be one that would answers many, many questions. And later, on the NAMI message boards for schizophrenia, I would see it referred to as the "Bible" on schizophrenia. But too many times as I read through some chapters, I kept getting tripped up by the negative and dogmatic attitude interspersed throughout it. So I put the book down and forgot about it.

A little over a week ago I picked it up seeking to once again expand my knowledge of my illness so that I could write an informed essay on some aspect of schizophrenia or of my personal experience with it. I remembered that I had been skeptical about it in the past, but thought I would give it another chance. I skipped the first chapter and went directly to the second entitled The Inner World Of Madness: View From The Inside. My first thought was that Mr. Torrey was being a bit presumptuous. He did not suffer from schizophrenia and he could not know about it from the inside. As I read I saw that he did include the perspective of some people who did suffer from schizophrenia and some of that was interesting, but still I thought the tone was off. I had the thought that I might write an article that challenged some of Torrey's perspectives, but first I wanted to get the newest edition, after all he might have changed his position in the intervening years. The newest 5th edition dates from 2006. I ordered the book and got it today.

Right away I compared the two editions to see what had changed and what had remained the same. I felt like a detective...or a journalist. On the cover I noticed that the word "Consumers" in the title had been changed to "Patients". The next thing I noticed was that the first "Disaster" chapter had been moved almost all the way to the back of the book and the second insider view of "madness" had been pushed up to the opening spot. I'm not going to review all the changes, just one that particularly drew my attention. In the 4th chapter, Onset, Course, And Prognosis, towards the end of it the author fit in amongst the sections something titled The "Recovery Model". I thought, yes, now maybe we're getting somewhere good. I believe in the "recovery model" and was hoping that he was starting to, too. No such luck. Mr. Torrey writes: "The 'recovery model' has no foundation in scientific studies or data. It has its roots in mid-twentieth-century exhortations about 'the power of positive thinking' and similar self-help movements....The problem with the 'recovery model' is that it places unrealistic expectations on individuals who suffer from schizophrenia and their families. If the person does not recover, then it must be because they are not trying hard enough. This is like telling individuals with acute polio that they can walk if they just try hard enough; the reality is otherwise."

Here is a little bit of background on Mr. Torrey: He was born in Utica, New York in 1936 and got his bachelor's degree magna cum laude from Princeton, his medical degree from the McGill University School of Medicine, a master's degree in anthropology from Stanford University and also trained in psychiatry there as well. His sister Rhoda was diagnosed as having schizophrenia in 1957. In the 1940s and 50s there was a strong tendency, due in part to Freudian psychoanalysis, to place blame for schizophrenia on poor parenting, especially poor mothering. Mr. Torrey has said that this had a strong and negative effect on his mother and obviously on him too, to some extent. Meanwhile, his sister has never recovered and has mostly lived in psychiatric hospitals.

Personal experience tends to color everything and create certain preferences, beliefs and even prejudices. Mr. Torrey seems to have dedicated his life to helping those who suffer from mental illness, and their loved ones, learn to cope better through education. The problem is that his education has serious flaws, particularly since he is in a position of influence, a position he has been known to use to his advantage on occasion. What's tricky in his book is that his obvious negative prejudice is interwoven with elements that are also accurate or at least sensible. I certainly wouldn't say--throw the book away, nor would I say that Mr. Torrey's life is so misguided as to be wasted. But I do say, that he is too quick to throw out the idea that schizophrenia goes beyond the biological and into the psychosocial and even spiritual realms. His view is dry. It doesn't lack heart, it lacks insight, the insight of precisely those he is trying to help.

Of the "recovery model" he writes that it "has been widely extolled by a few individuals who had an episode of schizophrenia, or some related illness, from which they recovered. As such, these individuals fall into the category of the 25 percent of patients who completely recover. What these individuals are saying is: 'If I did it, so can you!'" I don't believe that those of us who do move in the direction of recovery are as few as Mr. Torrey seems to think. In fact, I think as society gradually begins to change its views on mental illness, deflating the stigma attached to it, more and more people will venture out to new territory and start to spread their wings.

I did not have one "episode" of schizophrenia and I am not fully recovered, but I am proud of how far I have come, proud that I survived the acute stage of my illness. I was acutely ill for years and then for years depressed. This recovery of mine has been hard won and is precious to me. Mr. Torrey thinks he is a realist, but I think he is more of a fatalist, which is odd for a doctor. A good attitude and positive feedback, a creative approach and natural intelligence along with yes, medicine and a great deal of patience is what I call living in recovery and it is good enough. Low expectations create a low level of living. I know you should dare to dream, if only just a little at a time. If you take away the dream, you not only lessen the quality of life, you shorten life itself. There may be no scientific data on that, but that doesn't detract from its veracity. The science of the body is not all there is, though it is important and before we return to dust let us embrace our spirit which is so much greater than just "the power of positive thinking".


9 comments:

Chris said...

Kate:

Your greatest blog entry ever!

I know that people can recover. The point is not that everyone is going to recover to the same degree. Rather: the goal is to embrace life and accept your changed circumstance while AT THE SAME TIME you seek to grow as a person. People diagnosed with schizophrenia can improve themselves. We have the right and duty to do this to the best of our ability.

You have to understand that E. Fuller Torrey and others of his ilk tend to sensationalize what goes on in order to advance their agenda.

He confuses the recovery movement with something it is not. I guarantee you no one who is in recovery thinks the self-help nature of the recovery movement gives false hope. It gives hope, period. The goal is not for everyone diagnosed with schizophrenia to do what everyone else does, like what I do certainly not. The goal is personal fulfillment and self-actualization. And that is what the recovery movement promises: a better life in a realistic way.

I'm so steamed now about this guy. I would like you to respond to my comment. He is wrong, wrong wrong and wrong again to claim that the recovery movement does great harm. First of all: most people diagnosed with schizophrenia and other mental illnesses would not have dared to dream of recovering unless there was a movement of fellow sufferers cheering each other on.

My point is well taken I believe.

Cheers,
Chris

Wanderer said...

Christina,

Thank you so much for your comment and I am in total agreement with you. In fact, you are one of several people with this illness who have inspired me to believe in recovery. In fact, MOST people I've encountered who have schizophrenia, schizo-affective disorder, bi-polar disorder and major depression strike me as both intelligent and creative and willing to embrace recovery with a bit of encouragement.

I really find Mr. Torrey's bleak outlook toxic to me. I mean even after reading a bit of his book again, I found myself falling into fearful and negative thinking and had to put it aside once more in order to straighten myself out. And if it is toxic to me, despite the good within it, I'm sure it is not a good book for people ill with schizophrenia to read or their loved ones. What a shame! The book could be wonderful with just a shift in attitude, but Mr. Torrey appears to be entrenched in his particular perspective. It makes me feel sympathy for his sister. I wish I could give her some of the hope that I have discovered.

The power of positive thinking is not something to scoff at. Just as the power of faith in a higher power is not something to readily dismiss, especially for people who are suffering. We each are living our small lives, but we are all interconnected anyway, this I really believe, but cannot prove. The internet has opened the world up to me and so many others. Safe communication and creativity is vital to recovery and that's why I respect you so much for your dedication and for getting the word out that recovery is possible.

I think Mr. Torrey is still stuck in the 1940s and 50s when he was young and the outlook for schizophrenia and other major mental illnesses was so bleak. But times they are a changing, I do believe. He doesn't realize that he is fostering stigma too, but the more people come forward and say, yes, I've been to hell and back and now I have a good life, the better we will all be. Young people in particular need to believe in recovery. Way too many people still take their own lives in part because of what Mr. Torrey is suggesting, i.e. that the "Recovery Model" is not realistic.

Yes, your point is well taken. Let's keep on keeping on. Maybe someday one of us will write a book entitled "Recovering From Schizophrenia" in response to Mr. Torrey's tome. We have to aspire to recovery, mere survival is not enough.

Cheers right back at you,

Kate : )

Bev said...

Kate, I've been thinking of you lately. I miss talking with you. I've been going through a lot of loss lately and I just want to make sure the people in my life know I appriciate them and care deeply about you. So Kate. thank you for being my friend. I love you.

I also wondered if you have ever heard of Post Secret. If not check it out. www.postsecret.com.

Anonymous said...

Hi, my name is Eric. I have schizophrenia. I made a website for my friend who is schizoaffective. She is an artist as well. .....schizoaffectiveartist.com....

She is a very nice lady, very easy to talk to.

Peace

Anonymous said...

Kate,

You speak so well about recovery and I hope you will write a memoir about your life. I would buy it! Due to the fact that I suffered so many debilitating depressions, was hospitalized and have recovered, I believe...it is so sad to know that there is a book out there that could actually harm rather than help others to believe in recovery. Who is a stronger voice for recovery than a person who suffered and who is now so much healthier and happier. It is those of us who were "there" and now "here." I am so glad to know you and Chris and to know that both you and she are helping so many. I feel I must do my part for those who suffer from depression. Elation, my project is not shelved forever. I know that through the arts we can have an outlet for strong emotions. Society calls things "weird" that it doesn't understand. I have found that people who are creative use their art as an outlet to pour their heart and souls into expression that would be unacceptable in society. Also, I have learned that negativity is like poison to me and others and just begets more negativity...so I have learned to let go more...I could go on and on...but we can stay in touch and I feel very thankful to count you as a friend with whom I can discuss these types of ideas. Keep blogging. I am sure you are saying what so many need to hear. xo, Nancy

moleculeColony said...

Hi, I've had schizophrenia for 20 years while believing I'm on a spiritual path where all that is happening to me is something supernatural that is real, only last year there was some clash with reality and I had to reorder completely my thinking system, and if you (or a doctor) would see me now they would say I'm cured, and it would be difficult to believe that I was so crazy. (Even difficult for myself.)
So, schizophrenia is curable, there are two main things here, your thoughts and your visions.
It certainly would be good for everyone if their thoughts were throughout thoroughly truly right, but it is even much more necessary and downright vital for people whose brains have more than one active areas. (Areas with a complex inner dynamics that produce something like free will.)
What happened was that these areas responded to my ideas and produced experiences (imaginations), and my ideas responded to these experiences, and so, if wrong ideas start producing insane visions and these nourish wrong ideas, then it's the way towards madness.
The same way can lead towards illumination, when right ideas produce wonderful visions, as this is the path of religious and mystical searchings, but in my case it also works with ideas that are scientifically and psychologically based.
Meaning, my vision system is starting to know what it is, namely the combination of my previous experiences, especially from childhood, but also from later. For example, some aspects of my mother and father, feelings, memories of certain moments, etc., they were recombined later in a way that made them dynamically active on their own, and then they appeared to me as a very powerful and mighty entity, who presented himself as a variety of beings, including god. (One of my favorites, though my dearest one is the woman women.)
All this is a wonderful and highly intriguing adventure, I'm hopefully planning to write all this down in a book, but it still is too early to start with it as I want to find out more about how my way will continue before. But I'm already speaking a bit about my story, and also searching for likewise minds, who have similar experiences with what is commonly labeled as schizophrenia, who worked their way out of it, and who might be kind of similar to the genetic stature of mine. (The main idea is that the human race has a certain genetic variability, in this respect of the brain, and that some of these variations tend to have visions and other experiences, and that some of the latter variations are also quite intelligent and creative, and that this is a certain brand of people that has it quite hard to fight their way around the society of "normal" brains (and where the question of what is sick and what is healthy is not clear at all, and certainly not subject to the vote of the majority), and nowadays they find refuge on the internet where they can connect among each other more easily than in real life where their scarceness and therefore geographic distance has kept them in isolation for all too long.)
Uh, I like long sentences, there is some kind of flow in them, though I never know how hard they are for others to read.
Also like short sentences. Tao.
Erich

Anonymous said...

Here's another take on Dr. Torrey. I do hope you allow both sides of the story to be told.
http://www.treatmentadvocacycenter.org/index.php?option=com_content&task=view&id=1472&Itemid=131

Mental Illness Policy Org said...

Does this blog allow both points of view to be presented? If so, read this

http://www.treatmentadvocacycenter.org/index.php?option=com_content&task=view&id=1472&Itemid=131

Unknown said...

Hello. My name is Lucinda. I have had Schizoaffective disorder since 2009 however I was I believe misdiagnosed with the diagnosis of bipolar disorder in 2001. So I have been suffering with mental illness for a long time. Actually my first treatments and symptoms of depression and psychosis was when I was only 16 years old. I am doing better now on meds that are working correctly for me however I still am trying to get the perfect combination as far as the dosage level. I just wanted to introduction myself and I am glad to read your posts here Kate because it is refreshing to read and for me to start to realize more and more that I am not alone. I have been in the dark for a long time. Again my name is Lucinda Kerrigan and I hope to make some friends on this site in the future. I am also on Facebook. I am hoping to start a support group soon on Facebook. If interested please contact me so I can let you know if the group has been created. Thank you and have a wonderful day!