1
A recent Facebook post asserted that “FB is schizophrenic…enough to make my head spin…!” A local hospital administrator misused the term in a public presentation, and a recent letter in the local paper ‘accuses’ U.S Supreme Court Chief Justice Roberts of having schzophrenia because of his position on the Affordable Care Act. Many people use the word ‘schizophrenic’ as if it means ‘split personality’. It doesn’t.
People who have schizophrenia, a serious brain disorder, have difficulty organizing their thoughts and experience a disconnect with reality, often together with intense fears and/or fantasies. Psychosis and delusions associated with schizophrenia can be severe and disabling. The disease manifests itself in different ways that can include catatonia, hallucinations, social isolation, incoherent speech, inability to organize sensory input (“losing my mind”), lack of self care, and emotional flatness. Generally speaking, 1% of all people in the world have schizophrenia, irrespective of social class, culture, education, family functionality, or environment.
Similar to other chronic diseases, it is currently thought that activation of a hereditary predisposition for schizophrenia is caused by a not-yet-understood, seemingly random interplay between genetic and environmental factors. The latter may include stress, viruses, head injury, in-vitro stimuli or illness, and/or substance abuse. Non-human primates do not show evidence of this brain disorder; new research provides evidence that schizophrenia evolved exclusively humans due to our more complex brain structure.
2
In May, a popular Santa Cruz downtown shop owner, Shannon Collins, was killed in a random stabbing by a person with a long history of paranoid schizophrenia, a specific type of schizophrenia which can be associated with violence toward oneself and others. This person had recently been discharged from a state prison mental health facility due to a random clerical error which legally required his release (- the law is now being changed). Subsequent to this premature discharge, he had apparently tried to get readmitted to the locked hospital because, according to his brother, he was afraid and believed he wasn’t ‘ready’ to be on his own.
I am deeply appreciative of the compassion shown by Ms. Collins’ family in the face of others’ willingness to resort to stereotypes about people with mental illness, and/or people who may be homeless. Our state mental health system is being dismantled, and what remains seems often to be only the criminal justice system or the streets. It’s not difficult to imagine that this terrible tragedy, and others associated with serious mental illness, might have been averted at so many points along the way. While it is painful and most often not helpful to get stuck in ‘what if’ scenarios of past events, they inevitably affect our understanding of what is, and how things could possibly be better in the future.
The incidence of violence associated with mental illness is the same as the incidence of violence in the general population. Substance abuse can affect both.
3
I will never forget the first time I heard the word “schizophrenia” in reference to our younger daughter Kelsey. It was during a meeting with a psychiatric nurse following K’s third hospital admission in less than two weeks. By then, we were only beginning to learn about mental illness and psychosis, and our awareness of schizophrenia at that point was pretty much derived from media stereotypes.
In the springtime of her first year of college, at age 19, Kelsey experienced a psychotic breakdown. She had enough self-awareness to call 911 and was admitted into a nearby hospital. After three brief periods of hospitalization, in Ohio and Santa Cruz, our daughter was diagnosed with schizophreniform disorder -a common initial diagnosis when symptoms of schizophrenia have been evident for less than 6 months. She said she felt like she had lost her soul. She died by suicide one week after being discharged from that third hospital stay, one month after she first called 911. One third of all people with schizophrenia attempt suicide. About 10% succeed.
Today is her birthday – she would have been 28.
4
A couple of years after Kelsey died, I worked as a volunteer with the Mental Health Client Action Network, a well-established peer support group in Santa Cruz, and talked with many people and families who live with serious mental illness. They often struggle to not have illness define their entire lives – in the same way that people who have diabetes might struggle with that. Many of them had never talked with anyone outside of their own families about it because of shame and fear of stigma – unlike diabetes.
One in four adults experience some form of serious mental illness every year, and mental illness is one of the three primary reasons for homelessness. There is good evidence that medication, peer support, housing, and work opportunities can help people recover and live satisfying lives with these illnesses.
postscript
Misuse of words like schizophrenia and schizophrenic adds to the already heavy burden of pain and isolation that people with mental illness often feel.
Tina Brown’s opening column in this week’s Newsweek features the article iCrazy and includes a quote from a subsequent article about Syria: “Syria, I realized, has become a schizophrenic place; a place where people’s realities no longer connect.” This is the first time I’ve ever heard the term used more-or-less correctly in non-mental health oriented public forum.
Let’s make sure that our colloquialisms connect with reality.
– thank you to Suzanne and my family for their thoughtful feedback on an earlier draft of this post.
the everyday primate 
Hi Linda,
Thanks for sharing your thoughts and Kelsey’s story. Though I never knew her, what you’ve written makes me pause today to think about her and others I know who struggle with mental illness and its devastating impacts. Your more general points about language are relevant for some reflection this day as well. In addition to misusing the language of disease and illness, there is a disturbing tendency on both right and left to misuse terms like fascist, police state, Nazi, and—in the recent case of Governor LePage (R, Maine) in reference to the IRS—gestapo.
Thanks for these several reminders today. You and your family are in my thoughts.
thank you Lisa. As you no doubt know, many animals have language, in many forms, but our version of it is one of those things, like schizophrenia, that distinguishes us from other creatures. so it seems worthwhile to pay attention to it. …not that I always follow my own values here, but I try…
Gary and I are both crying. The photo is just right. Thank you for continuing to educate us. And just as much, thank you for honoring Kelsey by remembering her and talking about her.
you both mean so much to our family – love.
Thank you for reminding us to be thoughtful with our language. We can show our ignorance by being careless. I know I have been thoughtless at times over the years. Thanks again. Stephanie
you’re not alone…see response above. thanks for your comment.
A beautiful tribute to Kelsey on her birthday, and very wise and informative piece that I would like to share with our growing NAMI Santa Cruz family, with your permission.
My love to you on this difficult day,
Carol Williamson
so much appreciate NAMI for its advocacy & support.
Your thoughtful and informative post is a fitting tribute to Kelsey. Thank you and your family for sharing your hearts with us and also for everything that you do for those of us who have family members struggling with mental illness or who are coping with it ourselves.
I agree with your big points.. less stigma and more understanding of mental illness would lessen the burden of the disease. and better systems of care would benefit us all.
And I like your points about the misuse of the word schizophrenia. What if we considered angry outbursts to be the same thing as high blood pressure? Rush Limbaugh rants and raves.. and we would say, “now there is a guy with a blood pressure problem!” Nobody would want to admit they had high blood pressure…People who had high blood pressure but didn’t have a problem with anger, might refuse to take effective medications. High blood pressure would be seen as a personality defect.. tt would be so confusing!
Thanks for sharing this, Linda. Thinking of you.
Love, Robin
Thank you Linda. This is truly touching. In honor and appreciation of Kelsey, for all that she was to those of us who were blessed enough to have her in our lives. She taught me so much. And thanks for challenging the stigma and misinformation surrounding those who struggle with mental illness.
Love to you and the family,
Buffy
thanks for your comments, all. per #4, Kelsey was so many things – a loving daughter & sister, an artist, a loyal friend, a terrific writer, a perceptive mind, and, as we all are, uniquely the product of our genes, mutations, & environments. we can’t change the genes or mutations, but we can sometimes affect our environment – the main point of this post, after all. with appreciation…
We were out of town last week, but reading this reminds me of the still, ever present stigma of mental illness. The media truly do not understand psychosis and always report episodes that reach the public eye as if they were intentional actions that can be controlled by will power.
what mystifies & bothers me is how resistant this ignorance or blindness is to change…and now we have another sad example of health care system failure combined with the power of the NRA…
Just now read this – tears and memories – so much wish she had lived to provide us all with more memories. Our loss has helped me be a better educator and administrator. Her brief transition from the Kelsey we knew to the Kelsey we remember reminds me to speak honestly to parents when issues of mental illness come up. It also enables parents to speak to me. Thank you for your constant openness.
thanks Kristin. In light of the most recent terrible tragedy in Colorado, it seems like speaking honestly will not only help those with brain disorders – it will help all of us.
Very powerful, wow! Thank you for this post. Linda, my thoughts and prayers were with you and your family at that sad time, and ever since in a way. All of our hearts broke without even knowing Kelsey.
thanks Harriet.
here is some new research on genetic risk factors for schizophrenia & other serious mental illnesses: http://www.nytimes.com/2013/03/01/health/study-finds-genetic-risk-factors-shared-by-5-psychiatric-disorders.html?_r=2&
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