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schizophrenia from the inside

September 3, 2012

Most of what I have learned in life, I’ve learned from living, or from stories. I’m grateful for many novelists, filmmakers, poets who have made windows into worlds I would never otherwise be able to imagine.

Here’s a lawyer with schizophrenia, telling some of her story. Thank you, TED talks, for inspiring us to imagine and act towards a better world.

Elyn Saks: A tale of mental illness — from the inside

It’s always good to hear what people find helpful in managing their illness. Among other things, Saks credits her supportive and challenging work environment with helping her stay well. “Occupying my mind with complex problems has been my best and most powerful and most reliable defence against my mental illness.” (I’d like to look at that one statement in much more depth. When/how might stimulation and its absence – or stronger and milder stimulation, mental, tactile, kinaesthetic, spiritual – be more or less helpful in coping with/recovering from episodes of illness? If anyone has stories, articles, experiences  which could add more to consider, please share!)

The support of friends, spouse, colleagues and caregivers has clearly made a difference, and Saks is clear that in different circumstances, she could have been one of the many untreated or under-treated people with schizophrenia who are homeless or in jail.

What has not been so helpful: oppressive aspects of hospital care/culture, such as force and restraint, being left for hours in discomfort and fear.

Thank you, Elyn Saks, and others who have spoken out about their experiences with stigmatised illnesses – Kay Redfield Jamison, Candace Pert, Temple Grandin

If you’ve been touched by someone’s story, or have a story of your own, please comment.

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2 Comments leave one →
  1. Wendy permalink
    September 3, 2012 7:21 pm

    Thank you Alison. This TEDtalk resonated with me in so many ways. It took me back to when I visited my daughter-in-law to be, in the psych ward of a major hospital. Her face was filled with such pain and confusion as to why she had been restrained, placed in a padded room, and forcefully administered medication. The comment Elyn makes about solving complex problems to ease the effects of her illness also rang true. Many people I know with mental illness have such a keen, sophisticated intellect and yet struggle to be understood and to be given the opportunity to utilize these gifts. Our future daughter-in-law had been the “rock” in her family, with a sharp mind. In our last conversation before her suicide she tried to articulate what was going on “inside”. This talk by Elyn Saks most closely represents what Sarah was trying to express to me that day. We have to work harder to understand.

  2. September 4, 2012 5:53 am

    Thanks for sharing the video and for your comments, Wendy. I’m sorry your daughter-in-law was not able to find another way forward. That must have been so hard for you all who loved her.

    We do need to work to understand, and grow into a more inclusive and compassionate society. Our culture tends to bulldoze forward and not listen enough to people who are not doing ok, or to people who are experiencing daily life differently. How different would our communities feel if we adapted to not just tolerate, but really integrate the most sensitive or vulnerable? How much more room would there be for all of our wholeness? How much more comfortable might daily life be?

    In health care, we have not, overall, done a good job at looking at physical and mental health together, or at living up to the original meaning of the word “hospital”. Our health care environments are rarely restful, person-centred or beautiful – to those receiving care or those giving care. We don’t always take the time to listen. (We teach nursing students that “not having time” is not an excuse – and at the same time, doing more with less comes down hard on individual caregivers.)

    It is too easy to see people with mental illnesses as “other” and somehow less deserving of care or understanding – and also, from within a mental illness or the stresses of a physical illness (I know those are artificial distinctions), it can be hard to feel the reality of people’s caring. Families and friends are incredibly important advocates when people are unwell – partly by listening, as you did, and sharing the person’s values and wishes and perceptions and wholeness with health care givers, so we can see more than their current “presentation.”

    I was struck by Elyn Saks statement that, unlike some who live with other illnesses such as bipolar or depression – or with impaired vision or hearing – who say they would not choose not to have the illness (or condition) if it meant losing the benefits which go along with their way of experiencing the world, she would definitely choose to lose her schizophrenia if she could. If there are benefits, they are not worth the suffering.

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