Friday, July 25, 2008

New Positive Conversations about Mental Illness

This is what is needed in this country. Open dialogue about true mental illness, not just depression, but raw data on what it really means to be "mentally ill".

Mad pride’ fights mental illness stigma

01:00 AM EDT on Sunday, July 27, 2008

The New York Times

Writer and blogger Liz Spikol, a 39-year-old who suffers from bipolar disorder.

THE New York Times/ Shea Roggio

In the YouTube video, Liz Spikol is smiling and animated, the light glinting off her large hoop earrings. Deadpan, she holds up a diaper. It is not, she explains, a hygienic item for a giantess, but rather a prop to illustrate how much control people lose when they undergo electroconvulsive therapy, or ECT, as she did 12 years ago.

In other videos and blog postings, Spikol, a 39-year-old writer in Philadelphia who has bipolar disorder, describes a period of psychosis so severe she jumped out of her mother’s car and ran away like a scared dog.

In lectures across the country, Elyn Saks, a law professor and associate dean at the University of Southern California, recounts the florid visions she has experienced during her lifelong battle with schizophrenia — dancing ashtrays, houses that spoke to her — and hospitalizations where she was strapped down with leather restraints and force-fed medications.

Like many Americans who have severe forms of mental illness such as schizophrenia and bipolar disorder, Saks and Spikol are speaking candidly and publicly about their demons. Their frank talk is part of a conversation about mental illness (or as some prefer to put it, “extreme mental states”) that stretches from college campuses to community health centers, from YouTube to online forums.

“Until now, the acceptance of mental illness has pretty much stopped at depression,” said Charles Barber, a lecturer in psychiatry at the Yale School of Medicine. “But a newer generation, fueled by the Internet and other sophisticated delivery systems, is saying, ‘We deserve to be heard, too.’ ”

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

Mad pride events, organized by loosely connected groups in at least seven countries including Australia, South Africa and the United States, draw thousands of participants, said David W. Oaks, the director of MindFreedom International, a nonprofit group in Eugene, Ore., that tracks the events and says it has 10,000 members.

Members of the mad pride movement do not always agree on their aims and intentions. For some, the objective is to continue the destigmatization of mental illness. A vocal, controversial wing rejects the need to treat mental afflictions with psychotropic drugs and seeks alternatives to the shifting, often inconsistent care offered by the medical establishment. Many members of the movement say they are publicly discussing their own struggles to help those with similar conditions and to inform the general public.

“It used to be you were labeled with your diagnosis and that was it; you were marginalized,” said Molly Sprengelmeyer, an organizer for the Asheville Radical Mental Health Collective, in North Carolina. “If people found out, it was a death sentence, professionally and socially.”

She added, “We are hoping to change all that by talking.”

The confessional mood encouraged by memoirs and blogs, as well as the self-help advocacy movement in mental health, have deepened the understanding of bipolar disorder and schizophrenia. Books such as Kay Redfield Jamison’s autobiography, An Unquiet Mind: A Memoir of Moods and Madness, have raised awareness of bipolar disorder, and movies like Shine and A Beautiful Mind have opened discussion on schizophrenia and related illnesses.

In recent years, groups have started anti-stigma campaigns, and even the federal government embraces the message, with an ad campaign aimed at young adults to encourage them to support friends with mental illness.

Members of MindFreedom International, which Oaks founded in the 1980s, have protested drug companies and participated in hunger strikes to demand proof that drugs can manage chemical imbalances in the brain. Oaks, who was found to be schizophrenic and manic-depressive while an undergraduate at Harvard, says he maintains his mental health with exercise, diet, peer counseling and wilderness trips — strategies outside the mainstream thinking of psychiatrists and many patients.

Other support groups include the Mad Tea Party in Chicago and the Freedom Center in Northampton, Mass., which provides education, acupuncture, yoga and peer discussions to about 100 participants.

While psychiatrists generally support the mad pride movement’s desire to speak openly, some have cautioned that a “pro choice” attitude toward medicine can have dire consequences.

“Would you be pro-choice with someone who has another brain disease, Alzheimer’s, who wants to walk outside in the snow without their shoes and socks?” said Dr. E. Fuller Torrey, executive director of the Stanley Medical Research Institute in Chevy Chase, Md.

Torrey, a research psychiatrist who studies schizophrenia and manic depression, said he understood the roots of the movement. “I suspect that not an insignificant number of people involved have had very lousy care and are still reacting to having been involuntarily treated,” he said.

Saks, the USC professor, who recently published a memoir, “The Center Cannot Hold: My Journey Through Madness,” says she manages her symptoms with psychoanalysis and medication. But the stigma, she said, is never far away.

She said she waited until she had tenure at USC before going public. When she was hospitalized for cancer some years ago, she was lavished with flowers. During periods of mental illness, though, only good friends have reached out to her. Online forum and support

The Icarus Project, a New York-based online forum and support network, says it attracts 5,000 unique visitors a month to its Web site, and it has inspired autonomous local chapters in Portland, Ore., St. Louis and Richmond, Va. Participants write and distribute publications, stage community talks, trade strategies for staying well and often share duties like cooking or shopping.

The Icarus Project says its participants are “navigating the space between brilliance and madness.” It began six years ago, after one of its founders, Sascha Altman DuBrul, now 33, wrote about his bipolar disorder in The San Francisco Bay Guardian, a weekly newspaper. DuBrul, who is known as Sascha Scatter, received an overwhelming response from readers who had experienced similar ordeals, but who felt they had no one to discuss them with.

“We wanted to create a new language that resonated with our actual experiences,” DuBrul said in a telephone interview.

Some Icarus Project members argue that their conditions are not illnesses, but rather, “dangerous gifts” that require attention, care and vigilance to contain. “I take drugs to control my superpowers,” DuBrul said.

Sunday, July 20, 2008

Interesting and amusing?

This is interesting in that maybe this right of passage is similar to a woman's post partum depression and psychosis. Might be something to consider and do further research on; sometimes some mental illness is triggered by a severe, traumatic, physical event, maybe in men as well as women?
Circumcision can lead to mental illness'
Thanks, Liz

A 21-year-old Langa law student looked forward to his rite of passage to manhood but two weeks after his circumcision at an initiation school in the bush he had a psychotic episode and was admitted to a psychiatric hospital.

In another case, a 26-year-old man earned the money in Cape Town for his initiation and then returned to the Eastern Cape for the ceremony. But back in the city his life spiralled out of control.

He was dismissed from work for trying to stab a co-worker, and within a year of the rite was admitted to a psychiatric hospital and diagnosed with schizophrenia.

These are two case studies taken from the PhD thesis of medical anthropologist Lauraine Vivian, titled Psychiatric Disorder in Xhosa-speaking Men following Circumcision.

Vivian explored the mental histories of five young men, who each suffered from acute psychotic episodes after initiation ceremonies.

She is based at UCT medical school's Primary Health Care Directorate.

Her thesis examined how stress and anxiety related to personal, social and cultural factors, could possibly trigger the onset of a psychotic illness in vulnerable young men with a predisposition to such illness.

Circumcision and illegal initiation schools again made headlines in the news this month.

The circumcision death toll in the Eastern Cape has reached at least 20 so far this season, the provincial health department said.

Another 72 initiates were admitted to hospitals in the region, suffering from dehydration or septic wounds.

Vivian said as an anthropologist she had great respect for the Xhosa custom but there was a need to ensure the rights of these young men were protected and the practice was carried out safely.

"Our Constitution protects the rights of all these young men. The onus is on the health system to ensure that cultural practices do not turn abusive."

She graduated this year after doing six years of research at a number of psychiatric institutions in the Western Cape, the Eastern Cape and the Northern Province.

She screened over 50 patients who had suffered from various psychiatric illnesses linked to their circumcision but focused on five men.

She interviewed traditional surgeons and community elders, and worked closely with a task team in the Eastern Cape.

"At times it was distressing to hear what some of the young men had been through: how they were marginalised because they were mentally ill and received little care from their communities, who believed they were bewitched."

Adolescence and the pathway to manhood was tough enough in itself. In the cases she looked at, there was evidence that a lack of family support, especially the absence of a father, played a major role in exacerbating the patients' stress and anxiety.

"Evidence illustrated that the most significant stressor was when fathers did not fulfill their roles as required for their sons' circumcision.

Because the father/son equation underpinned this patrilineal rite of passage, their psychological health and social relations were compromised, it highlighted the stresses, psychological harm, cultural dissonance, poverty and stigma they had suffered and indeed continued to endure."

Ironically, she said, there was a local idiom that warned of possible mental illness in youth who were not circumcised to their fathers' line of descent.

"As much as it was a warning, it counselled that fathers, mothers and families needed to engage with their sons at this potentially turbulent time in their sons' lives."

All five of the men in Vivian's study went through their initiation without the support of their fathers.

They also developed psychotic illnesses within one year of their circumcision. Two suffered brief episodes, which improved when their cultural experience had been addressed through therapy.

Her work argues that in the cases of the five men, stressors involved in their circumcisions precipitated stress-related anxiety, and because they were vulnerable, this contributed to the onset of psychotic illness.

They suffered from either schizophrenia, bipolar disorder or cultural bound syndrome (a disorder brought on by cultural

Monday, July 14, 2008

Another sad story

Here is a man who had everything. He was bipolar and not in compliance with his prescribed medicine. We can coddle and use therapy with some mentally ill patients forever, but for some the bottom line is they "MUST" take the prescribed medicines. Very sad. My son worked for this company for two years and they have a very good internet security product that a lot of us are using right now.
Police and the medical examiner's office have identified a body discovered below the Pali Highway lookout as Steven Thomas, the 36-year-old millionaire who has been missing for two weeks. Three hikers found the body Sunday, a couple hundred feet below the lookout. It was recovered by firefighters who had to be lowered into the forested area. Thomas founded a Colorado-based Internet software security company and owned a home in Boulder. He had been missing since June 30. He was last seen in Waikiki, where his mother and a cousin were staying.
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Cardis Thomas said her husband was diagnosed with bipolar disorder in April but refused medication. Thomas was arrested April 27 and taken to Castle Medical Center after he ran naked into the middle of a race in front of his home in the Lanikai.He was anxious about the poor performance of his investment portfolio as well as discussions about moving back to Colorado, his wife, Candis Burton Thomas, had said last week. Thomas is the founder of Boulder-based Webroot Software Inc. The software company that created the Spy Sweeper and Window Washer programs was sold in 2004 to a group of investors for about $108 million.Thomas controlled a fortune estimated at $50 million.In Boulder, the company he founded had waited for news that Thomas was located."You know the entire Webroot community is very concerned about Steve’s well-being. We’ll do anything to support Steve and his family through this time," said Bob Berger, earlier this week.

Saturday, July 12, 2008

More of this is needed


Celebrity confessions, candid blogs and even a festival are pushing mental illness into the limelight

Parkinsons disease. Illustration of the brain, depicting the neurological disorder of Parkinson's disease

For the most part, Liz Spikol’s videos on YouTube come across as light-hearted and quirky. In one, she pinches her chin to demonstrate her weight gain; in another, she muses on what it meant for her relationship when she lost her libido. Yet Spikol, 40, executive editor and columnist of Philadelphia Weekly, is talking about what it’s like to live with bipolar disorder, a condition she has suffered from since her twenties.

Spikol is part of a growing movement of people who suffer from serious mental illness and are willing to talk honestly and publicly about their condition. She is articulate and successful, and this is part of the point. In books, lectures and blogs, Americans, particularly women, are gathering to fight the stigma of “the mad woman in the attic” and show they can live successful lives.

Now, this confessional trend is gathering momentum in Britain.

In London, a group of people who self-consciously refer to themselves as “mad” are getting together for a day-long festival on Saturday, aptly named Bonkersfest. It bills itself as a celebration of madness, creativity, individuality and eccentricity, “bonkers celebrations for everyone — bonkers or not”.

So Dolly Sen, 37, an artist and writer, will spend the day trying to screw a light bulb into the sky because “the world is dark enough as it is”. There will also be a moving padded cell, a de-normalisation programme, and performance art by Bobby Baker featuring seven adults dressed as frozen peas.

Does it sound a bit crazy? Well, that’s the point. “There’s a history of many artists and writers being diagnosed with mental illness,” says Baker. “People who were unusual and different used to be more celebrated and accommodated, but now there’s a tremendous amount of fear. I feel people like me have a sensitivity and creativity that is very valuable, as well as an enormous sense of humour about the whole thing.”

Bonkersfest was set up by the arts organisation Creative Routes, whose stated aim is to celebrate the creativity of mad people and campaign against discrimination. Certainly, many actors and comedians with mental health issues have talked about their problems. Ruby Wax, who has suffered from depression, will perform a monologue on mental health issues at the Edinburgh Festival in August. Stephen Fry has written about his experience of bipolar, and Hugh Laurie and Emma Thompson have admitted battling mental demons.

Yet for an ordinary person, without the protective glamour of celebrity, it can be much harder to talk about mental illness. “You feel ashamed,” says Sen. “It feels like something that should be hidden. Since I’ve been involved with Bonkersfest, my confidence has gone through the roof. It’s so empowering to be with people who understand you because they’ve been exactly where you’ve been, and you know they won’t judge you.”

Sen has certainly been in some dark places. When she started hearing voices at the age of 14, her life “stopped in its tracks”. Before that, she remembers doing well academically and playing football for her school, but once she became ill, she was taken out of class and offered no further education. For the next 15 years, she was on different kinds of medication and in and out of hospital in what she describes as a “horrible kind of life”. Eventually, the right medication was found, and three years ago, she was offered cognitive-behavioural therapy tailored to psychosis. “It has changed my life,” she says. “I still hear voices and get twinges of paranoia, but I am able to stall those thoughts.” Now she is studying film at university and feels in control of her life.

Baker refuses to say what her diagnosis is and prefers to call herself “bonkers”. “The trouble with labels is that people are very judgmental about those who are different,” she explains. She remembers when she decided to start talking more openly about her problems. “I had a show at the Barbican and thought I was established enough for it to be fine, but I heard a woman say she couldn’t get any of her friends to come because they didn’t want to see ‘some weird madwoman on stage’. I was shocked.”

For Spikol, the experience of talking and writing about her illness has been immensely powerful. “I got lucky with my editor,” she says. “Some people tell their employer about their problems and they get fired. I was asked to write a column. I was nervous about revealing what had happened to me, but the response has been so supportive, it has shown me it is worth writing about.”

Spikol’s symptoms started when she was 18. Initially, she suffered mainly from hallucinations. She was convinced there were cockroaches living in her mattress at university, so she slept on the floor. She managed to graduate, with a lot of support, but by the time she started her doctorate, she was too ill to continue. Eventually, she was given electroconvulsive therapy.

In one of Spikol’s more serious YouTube videos, you get a sense of what that must have been like. She holds up an adult nappy to demonstrate what she had to wear. Patients are also given mouth guards to stop them biting off their tongues. The treatment didn’t help, and it left her so profoundly disconnected from herself that she couldn’t even remember how to wash her hair.

Finally she was given medication that worked, and over the past 10 years, she has felt relatively stable and is in a committed relationship. “My previous relationships were unstable,” she says. “It’s hard for anybody to deal with somebody who is emotionally inconsistent. I went out with damaged people; it was like we found each other in the storm. For the past four years, I’ve been in a healthy, normal relationship. I met my boyfriend through friends, and because of my column, he already knew about my condition.”

She is less preoccupied with the labelling issue than many of the performers at Bonkersfest, and is happy to talk about bipolar disorder. She would rather focus on recovery, survival and being well. “I know some people feel that being mad is a gift to be proud of, but if somebody approached me and said, ‘I have a cure for bipolar disorder,’ I would take it right away. I don’t think the condition is an achievement, I think the way I live with it is an achievement.”

Ultimately, whatever the differences of the people within this movement, what they are all trying to do is reduce stigma, improve care and establish a more open conversation about mental illness — even if it means calling yourself bonkers and dressing up as a frozen pea.

Bonkersfest is on Saturday at Camberwell Green, SE5;

Tuesday, July 1, 2008

What's the reason?

This is in response to anonymous who posted that the incidence rate of mental illness in America is 26% and China is 4%. The million dollar question to all of us is why such a big difference 26 to 4; A difference of 22% between these two giant nations? Why is America's per cent so large? Open to discussion and theories?

Thanks, Liz