On Monday, I had lunch with an old friend. It all started because of last week's newsmaking announcement about so-called new findings about the genetics of schizophrenia.
I sent my friend a piece in The New York Times by Nicholas Wade which seemed to me to put a sober perspective on all the hoopla that followed. Well worth reading. Rather than a major breakthrough – for nothing would delight psychiatric researchers more than finding a cause for a varied group of disorders described as schizophrenia – what was reported was a big deal about information that's been known for years. At best, a tiny little piece of the puzzle was confirmed by three new studies.
The mysterious causes of schizophrenia are linked to thousands of genes, not just a few. There's lots of work still to be done.
It was this study that reconnected me to my friend. He often remarks that the word "schizophrenia" really describes psychosis – or, to be more precise, a number of different psychosis with several widely varying classes of symptoms.
At 89 and utterly brilliant, he and I met while I was writing for The Toronto Sun on one of my extended forays into psychiatric research and we remain buddies, although I do not see him often enough.
Yesterday, we wandered along College Street until we could locate a Japanese restaurant to our mutual liking and had an enlightening and, as always, fascinating chat.
He is a rare bird in the realm of psychiatry. One of the only people I know who launched his career as a psychiatric social worker in 1948 – the year I was born – after graduating from the London School of Economics in Psychiatric Social Work and studying clinical psychiatry with William Mayer-Gross at the Crichton Royal Hospital in Dumfries, Scotland. Dr. Mayer-Gross authored a seminal text called Clinical Psychiatry published in 1954, before the advent of the earliest antipsychotic medications.
After finishing his training with Dr. Mayer-Gross at the Crichton Royal Hospital, my friend moved to Canada to become director of social work at the former Whitby Psychiatric Hospital. Then he was named advisor in social work in the mental health branch of the Toronto Department of Health before taking the post of Associate Director of Psychiatry at the Toronto Psychiatric Hospital, which became the Clarke Institute of Psychiatry in 1964 and part of the Centre for Addiction and Mental Health (CAMH) in 1998. He finished his career at McMaster University as a research scientist, Professor of Social Work and Associate Professor of Psychiatry before retiring in 1990.
His professional career in psychiatry spans 42 years from the pre-Chlorpromazine Age to the age of the atypical antipsychotics. He is one of the most knowledgeable and reasoned professionals I have ever known and this week, schizophrenia was on our minds.
My very first psychiatric diagnosis was schizophrenia. A rather dotty and dusty old-maid psychiatrist named Margaret McQuaid gave me that diagnosis back in 1960 when I was barely into my teens. I didn't know it then, but ah, those labels. How they stick!
About six years later, I found out about it in a brutal way. Another mad shrink at The Clarke Institute of Psychiatry – I cannot name him as he's still kicking around – decided he had cured me, so one day, he put me in a glassed-in cubicle on the eighth floor and handed me my chart to read.
There, in correspondence and other documentation, I discovered I had schizophrenia and then, a few years later, the word "catatonic" was added. Scary words for an 18-year-old to absorb. I remember riding home on the subway shuddering. I ran up to my room where my 1966 edition of the Random House Dictionary of the English Language sat above my desk and looked those two words up.
• "Schizophrenia – a psychosis marked by withdrawn, bizarre and somewhat delusional behaviour and by intellectual and emotional deterioration. Also called dementia praecox, which means premature dementia."
• "Catatonia – a syndrome seen most frequently in schizophrenia, with muscular rigidity and mental stupor."
I didn't recognize myself remotely. Why were these words applied to me, I remember wondering. Can you understand why I detest these psychiatric labels and why language is so important to me? Yet, for the next seven years, through Seneca College and Queen's University, in the back of my mind, that diagnosis was there, though never in my entire life have I ever been "withdrawn."
In 1975, that diagnosis was changed to manic depression.
"You know, this is the 100th anniversary of the word schizophrenia," my friend announced as we perused the $5.99 specials. His first statement has been well documented. According to an article in the American Journal of Psychiatry Paul Eugen Bleuler and the Birth of Schizophrenia, on April 24, 1908, Swiss psychiatrist Bleuler first coined the term "schizophrenia" at a meeting of the German Psychiatric Association in Berlin – as opposed to the earlier label, dementia praecox.
Without recounting all this history of labels, let's just say that the term schizophrenia simplified what had been a grab-bag of other labels. Too bad. I've always thought that huge catch-all categories are more dehumanizing than specific ones.
According to former Boston Globe investigative reporter Robert Whitaker, in his book Mad in America – Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill, "Throughout the nineteenth century, physicians had conjured up a wild profusion of insanity types. Medical texts told of such ailments as "old maid's insanity," "erotomania," "masturbatory psychosis," "pauperism insanity," and "chronic delusional disorder."
Whitaker adds, "There was no rhyme or reason for these terms, and they provided little insight into what the future held for the patient." German psychiatrist Emil Kraepelin classified them into two streams – manic depression for those with psychosis and emotional disturbances, and dementia praecox for those with lack of emotion. The second group were given a less hopeful prognosis.
In 1908, Eugen Bleuler came up with the term "schizophrenia" which he viewed as a milder form of dementia praecox, according to my friend.
Bleuler wrote a paper about his new term "schizophrenia" in 1911, so my friend considers 1909 – a point in between – as the true birth of the schizophrenia.
Still, not much is really known about its causes today – probably because there are so many. I seriously doubt any one cause will ever be discovered.
My friend announced that back in the 1940s and 1950s, close to 50% of patients who were diagnosed with schizophrenia went into spontaneous remission – complete recovery – with humane care and no medication. There were no antipsychotics back then.
"The prospects of lasting spontaneous remission are greatest during the first two years of illness," my friend quoted in an email from page 267 of Clinical Psychiatry (Cassell, London, 1954), co-authored by Wilhelm Mayer-Gross, Slater and Roth. "After five years of continuous illness they become negligible. If a series of patients whose illness have lasted a year are followed up, about half are found eventually to remit; if the illness lasts two years, the proportion is still about 45%. Thereafter it quickly declines."
My friend notes that with "effective community support, many former patients with longstanding schizophrenia were able to live satisfactory lives without or later with medication."
Having a diagnosis of schizophrenia is not an easy one to live with and today, what we know about psychosis, no matter what you call it, is that early intervention is the key – especially for young people.
This also explains why so many leaders in the modern recovery movement – psychologist Patricia Deegan, Dr. Daniel Fisher and British psychologist Rufus May are three examples of countless people who have fully recovered from serious cases of schizophrenia and now live meaningful lives without medication. Others have succeeded brilliantly with psychoanalysis and medication, like law professor Elyn R. Saks, PhD.
The question is, what about the other 50% who don't spontaneously remit? Why? And what about the standard contemporary biomedical approach that involves prescriptions of newer, very powerful atypical antipsychotics? Do they promote spontaneous and permanent remission? Or are they harmful?
A great deal in psychiatry has changed in the last 40 or 50 years, but not a great deal more is known about the causes of schizophrenia. Genetic testing and brain imaging will be studied in about 100 people with schizophrenia, bipolar disorders and depression at CAMH, the first hospital in the world to explore these newer avenues of therapy.
We should be able to use all possible tools available for recovery. And recovery should be the goal. Not a belief that this condition is chronic.
The word "schizophrenia" carries enormous baggage. The media hasn't helped. But, I think it's interesting to learn from the past. If many people diagnosed with schizophrenia, experiencing abnormalities in perception, hallucinations, delusions and disorganized thinking have fully recovered with humane support and care – that, to me is a reason for hope. And an approach to be seriously considered. Not isolation, hospitalization, drugging and other inhumane treatments. Instead, inclusion, respect, education, accommodation, empowerment and nurturing. Give people a chance!
Schizophrenia is probably not chronic brain disease, as so many people would have you believe. It involves the mind and the soul, the whole of a human being. There is no scientific proof that it's a disease of the brain.
Trauma can play a part in the development of the symptoms that suggest a diagnosis of schizophrenia, as can genetics, intrauterine factors, early childhood environment, psychology, neurobiology, social and cultural influences – even drug abuse.
Until we have more information, the jury is out and anything is possible, including recovery! It's time to rethink our knee-jerk reactions to this condition. See it not just a medical context but in an historical context. In a post-psychiatric context, too, and in the context of the recovery movement.
Madness, a word I prefer to all the others, has many meanings. Love. Anger. Insanity.
Let's open our minds to all them.
"spontaneous remittance" sounds rather magical and I think it's rather misleading. if you listen and read about these people's experience who recover and live meaningful med free lives they go through a process in which they find meaning in their "madness" and work through it in a spiritual/psychological way...healing is not spontaneous...it takes work and the right supports...things we don't give people in general...
most people with these diagnosis aren't even told they can hope for recovery ever. and a life sentence is handed down.
anyway...we agree for the most part...
it's imperative that we offer people hope, options and alternatives they can act on.
thanks for introducing and/or presenting these ideas to your readers.
Posted by: Gianna | July 08, 2009 at 06:02 PM
Nice entry Sandy :) What an amazing buddy to have, and to talk to. Lucky you! That is good news to hear about the study combining genetic testing with brain imaging. I know the Royal Ottawa Mental Health centre wants to purchase a new scanning MRI - to trace where a drug goes in the body. But with a massive price tag attached. About 5 million alone, and then 2 million for adaptation of the room necessary for it and the associated equipment. Ouch!
One can only hope, as a mental health consumer, that we'll see better adaptation of us into main-stream society. Where mental illness won't be seen as a stigma, but simply a trouble with the mind, much like trouble with your heart.
I love the quote by Kirk Douglas in his book "A stroke of luck" "Now, why is it that most of us can talk openly about the illnesses of our bodies, but when it comes to our brain and illnesses of the mind we clam up and because we clam up, people with emotional disorders feel ashamed, stigmatized, and don’t seek the help that can make the difference."
Posted by: Deb | July 08, 2009 at 07:59 PM
Hi Gianna,
I think you're wise to question the phrase "spontaneous remission." It does sound like one day your delusional, hallucinating, muddled in your thinking and the next day, you're amazingly recovered. I think remission and recovery are a little different. One follows the other. First you remit, then you work towards recovery. I should have made that more clear and I am very pleased that you questioned it. Good point!
Today, the notion of "spontaneous remission from schizophrenia" is rarely spoken of, but I did fine this intriguing paper from the Winter 2000 issue of the Journal of Humanistic Psychology and titled "What's Wrong with Psychiatry?" The author, Al Siebert, PhD reports the identical and more recent statistics for "spontaneous remission from schizophrenia" as Dr. Wilhelm Mayer-Gross reported in his 1954 book. Plus some other fascinating findings on the nature of schizophrenia and mostly what is still not known about this puzzling disorder. A lot!
Here's the URL: http://www.successfulschizophrenia.org/articles/wrong.html
This is another paper by the same author in the same issue, titled "How Non-Diagnostic Listening Led to Rapid "Recovery" from Paranoid Schizophrenia."
And the URL for that one:
http://www.successfulschizophrenia.org/articles/ndlisten.html#molly
"Hope" must be central to recovery for all people with all ills – physical and emotional/mental/psychological/psychiatric. Not pills. Hope. If only psychiatrists would prescribe that as easily as medication. Sadly, their training is lacking. And Big Pharma would kick up quite a fuss!
Without hope, how can anyone proceed and progress – continue living – from one day to the next? Hope is necessary for human survival.
Thanks for your comments and your support of this blog.
Take good care.
sln
Posted by: Sandy Naiman | July 08, 2009 at 08:56 PM
Hi Deb,
Thank you so much for sharing your thoughts with our community and adding to our ongoing dialogue here at "Coming Out Crazy."
And for adding the voice of Kirk Douglas, too! ;-)
Wouldn't it be wonderful to be able to accept and live comfortably with our madnesses and to consider them – and they differ in each of us – as part of life. Oh, to be able to celebrate our eccentrics and eccentricities!
Madness is part of life and it makes us human. It's plays a huge role in the history of humanity and it's imprinted on your collective consciousness!
Let's just accept it as part of life. No labels, just life. With its ups and downs. Our journey. And make meaning of it. Live meaningfully. Find our meaning.
Take good care.
Cheers,
sln
Posted by: Sandy Naiman | July 09, 2009 at 10:39 AM
Hello Everyone...
I received an intriguing comment by email from a reader wishing to remain anonymous and I am posting it because I believe it should be shared here. It's quite wondrous and you'll see why...
"I find myself nodding my head in agreement with all your questioning of psychiatric norms. I like you had to fight from a very early stage in life to get dignity and respect from the psychiatric establishment.
"I am only two years younger than you, and I remember a harrowing ride home on a Toronto subway after a false diagnosis years ago ( I was 21 years old) of schizophrenia. Turns out I actually have a garden variety, average case of depression. Yet, like you that incorrect diagnosis haunted me for years.
"I don't know if you are familiar with Dr. Abram Hoffer. He was another glorious, medical renegade who died at the age of 91, at the end of June this year. To quote The Globe and Mail obituary of June 20, 2009: "His theories about the benefits of vitamins and nutrients were dismissed by the the medical establishment and Big Pharma - as he invariably described the international drug companies. Nonetheless, thousands of patients, many of them desperately ill form cancer or dangereously debilitated by schizophrenia, lauded him for giving them a longer or better quality of life. And his belief in the power of nutrition remains a foundation of naturopathic medicine and the health food movement."
"One of his more high profile patients was the actress Margot Kidder. Through Hoffer's dietary plan and supplements she has learned to manage her manic depression. He wrote a book called "Adventures in Psychiatry" which I haven't read yet but I think I will in the near future.
"What I love most about Hoffer was his creative ideas and his continuing roaming mind that thought outside the box. He was always questioning the status quo, taking the road less travelled, and heading towards breakthroughs. A real original. Yet, very grounded with great integrity."
I am very grateful for the spirit and the honesty of this comment and the information it contains. I, too, will add Dr. Hoffer's book to my list of "must-reads" and I thank you enormously for writing to me with this memory.
It is very validating to discover that I am not alone. We are not alone. We're right here.
One small thing. No one is "garden variety" or "average" – no matter what "label" you have been given. We are all different. All unique. All special. All extraordinary in our own ways. All breathtakingly "human" – the only label that works, as far as I'm concerned.
Be good to yourselves this weekend. Have fun. You deserve it.
Hugs,
sln
Posted by: Sandy Naiman | July 09, 2009 at 01:12 PM
Dear Sandy,
I was reading The Toronto Star (GT4, July 8, 2009) as it contains an article about "Karen" who is, according to the headline, "Breaking from a 'vicious cycle'"
In brief, childhood sexual abuse led to depression, led to drug abuse and teen rape which brought to life her first child. A few years later, a second child. Still, drugs and depression haunt this young woman. She was diagnosed with schizophrenia.
After her childhood experience, and teen years, it is no wonder she was depressed - society had not been there to protect her, nurture her or give her access to knowledge of the law and her rights.
As I read her story, parts relating to her diagnosis reminded me of you and your story. This reflects the humanity within each of us, the uniqueness that we all strive to achieve.
Sonia
Posted by: Sonia | July 10, 2009 at 08:26 AM
You say:
"There is no scientific proof that it's a disease of the brain."
But let's remember a small truth:
There is no "proof" for anything; there is "evidence."
So no, there is no definitive "proof" that schizophrenia is a brain disease. (Just as there is no "proof" that sexual abuse "causes" mental illness, although the two are correlated.) However, there exists a growing amount of evidence that shows that schizophrenia is a disease of the brain... or a condition which has a strong effect on the brain... (No matter how it is caused!) As such, schizophrenia is a disease that has an effect on the entire person, given that the brain, its structures and functions, are pretty well exclusively responsible for behaviour/thought/action/reaction/response/processing/whathaveyou. (So yes, I agree with your opinion that any type of approach to schizophrenia should respect the whole person, since the location of the condition results in an effect on the entire person!)
Please be careful with writing, since the way a thing is worded can affect how one thinks about a thing; can influence how others think about a thing. Broadstroke statements like "there is no proof" are kind of misleading to your audience.
Posted by: Tara | July 20, 2009 at 01:58 AM
Hi Tara,
Thank you for commenting.
I am not convinced that schizophrenia is "a brain disease," no matter what "evidence" may exist to prove that statement. Schizophrenia is a psychiatric puzzle and still much misunderstood. It is not a "disease of the brain" but a group of psychoses – many different behaviours.
If you want to know the truth, as far as I'm concerned, one of "my truths" – there are no absolutes – is that schizophrenia is a term that really doesn't mean very much any more.
I don't consider what are referred to as "mental illnesses" as brain diseases. I am not convinced that an illness/disorder of the mind equates with a disease of the brain. I am increasingly convinced that there is no mind-body Cartesian Dualistic split. Rather, we are whole beings and it's impossible to draw the line or separate the two.
Furthermore, I try to be very careful with my writing and I thank you for reinforcing how delicate and powerful language is – especially in the realm of mental/emotional/health/well-being/distress/disorders.
It's time, I think, to unstick ourselves and our thinking from some old ideas that, like labels, have a habit of sticking.
Again, thank you. I really appreciate your intriguing comment and will be more careful with my writing.
Cheers,
sln
Posted by: Sandy Naiman | July 20, 2009 at 01:23 PM