During the past week, two stories in Like The Dew collided smack into me and dredged up family history that I could never forget, would not want to forget, but had compartmentalized to take advantage of life’s forward motion.
Alex Kearns shared wrenching heartbreak about her sister’s unexpected death (My Sister, My Self). Her personal loss triggered for me feelings about the loss of my own sister, Trisha, who also died unexpectedly and who, like Ms Kearns’ sister, was also was a person with schizophrenia. Lots of feelings arise in me when the subject is schizophrenia, my personal shame chief among them.
The other story was Remembering The Heyday Of The Miami Herald by Chris Wohlwend. I contributed my annoyance that The Herald dropped the award-winning, Sunday supplement magazine Tropic for the nothingness of Parade just to save a few dollars.
Where does the collision come in? I can’t fathom how my family’s history would look from today, if not for an intervention by Tropic magazine, their writers and editors. The former newspaper magazine and issue of schizophrenia are intertwined in my mind and for now, I am again immersed in my family’s history.
I once approached a television news producer about doing a segment on schizophrenia and how it had torn our family to bits, and when he said, “Tell me about your experience,” I talked non-stop for two hours without scratching the surface of our anger, pain and confusion. He was kindly attentive, asked relevant questions and at the end of my purge, thoughtfully suggested that this clearly was a story needing more than a two minute sound byte. He directed me to Tropic.
What follows is my plea to Tropic written in 1987, hoping it would interest them enough to bring the family shame of schizophrenia out of the closet, to bring the torment and lack of treatment into the light. Pulitzer prize winning journalist and author Madeleine Blais (Uphill Walkers) took up the cause, interviewed us for months and then shared our family’s story about schizophrenia and how we did and didn’t deal with such a tragic disease. This was my plea:
You go to a party and meet somebody new. Perhaps you get involved in a long conversation about life. Sometime during the talk you begin discussing family and the person you’re speaking with refers to a brother, cousin or parent who is “difficult.”
“You have one, too?”
First they stare, then they begin reliving the horrors of having a schizophrenic in the family. And they can’t believe they’re speaking with someone who understands what they’re talking about.
Here’s what they’re talking about:
You go with your schizophrenic to a crisis clinic at a major city hospital to have her admitted, once again, for evaluation. Probably you have a court order to have her admitted against her will because she won’t seek treatment on her own. While you’re waiting you can’t help but notice that every few minutes new patients are arriving. People who are strung out, drooling or babbling incoherently. People who are laughing in a way that is singular to schizophrenics. And family members whose eyes are utterly desperate.
You know that if you didn’t have the court order, your schizophrenic would be evaluated in less than five minutes, and then be sent back home. You’ve been there before. So has your schizophrenic. And she knows that being quiet and cooperative will speed her release.
Your schizophrenic finally hits the depths. She’s forced into psychiatric care and is taking medication. After being released from the hospital she comes home to family members who want to believe that this is the last time. The schizophrenic gets a job, saves money, buys a car. She continues taking medication. The family begins to breath. Then the schizophrenic feels so good she quits taking her medication. But she doesn’t tell you. You don’t need to be told.
Her appearance deteriorates. She quits sleeping or eating, and loses her job. She parks her car somewhere and never goes back for it. She spends all night on a front porch talking to army recruiters, but there’s no recruiter there. She spends an entire day reading the newspaper, but never turns the page. She burns her arms with cigarettes and walks the streets naked.
After ten years of trying to find some help, a cure, or some permanent solution, it’s apparent that there is no answer. You realize you have to look out for yourself and the rest of your family. You have to look out for an eighty-five year old grandmother who is being tormented by your schizophrenic. And the day she pulls the chair out from under your grandmother is the day you get a restraining order barring her from the family and her home.
You get a call late at night from your mother. Your schizophrenic is home, and she’s irrational and violent. Because your mother is so full of guilt and confusion she can’t bear calling the police on her own daughter. So you have to. You go home, call the police and watch them drag her away from the house knowing you will be back tomorrow doing the same thing. And before they leave, the police suggest you buy your schizophrenic a one-way ticket to anywhere or pack up, move and leave no forwarding address.
So now your schizophrenic has nowhere to live except on the streets and in bus station bathrooms. She hasn’t eaten or slept in weeks. Your schizophrenic calls home after being beaten and raped, and you give her money. She gets a room in a filthy downtown hotel and lays in bed for a week suffering from contusions, swollen, infected legs, malnutrition and broken teeth.
It takes some time, but you get another court order. The police and an ambulance meet you at the hotel and take your schizophrenic to the crisis center for admission. You plead with the doctors to do a thorough evaluation, not only mentally, but physically as well, because you’re certain she’s dying. And while you wish she’d go away, you still believe that human beings don’t deserve to live or die like this.
And you can’t believe in your wildest dreams that within hours of admission, the patient is released. Back to the street.
A note is sent by the schizophrenic to the family. It says that if she isn’t sent money that afternoon, your grandmother will be killed. It’s an act of desperation, but because you’ve come so far down with your schizophrenic, you’re deliriously happy at this sudden turn of events. Because now the schizophrenic goes to jail. A protected environment with three meals a day. Medical care. And at least some kind of companionship.
After spending three months in county jail she is transferred on her 37th birthday to a state facility for the criminally insane. After nine months, your schizophrenic is sent to a halfway house. And for the first time in 18 years, she doesn’t depend on you. She finally understands that you can’t help her.
She now relies on the system and has a full time job just dealing with government bureaucracy for Social Security, food stamps and Medicaid. She has her teeth repaired because, as she puts it, “Even if you’re perfectly normal, without teeth there’s no job for you.” And she’d like a job.
With careful supervision she continues taking her medication, her only option for stability. She begins learning about her disease and so do you.
You discover that schizophrenia is a physical and chemical brain disorder, the cause of which is unknown. You learn that you can’t emotionally traumatize someone into schizophrenia any more than you can psychoanalyze them out of it.
You learn that schizophrenia is an ancient disease that feels new because of a well-intentioned policy called de-institutionalization which has failed miserably to consider the needs of the schizophrenic.
You learn that community programs exist to stabilize and resocialize schizophrenics, but that they are few and far between.
You learn that our government spends as much money researching schizophrenia as they do researching tooth and gum disease; and that for every person with muscular dystrophy there are ten with schizophrenia who have no poster child or telethon.
You learn that one-third of the homeless on our streets are schizophrenics; none have cerebral palsy. And you learn that cancer patients are never jailed as a treatment of last resort.
What you’ve really learned is that your schizophrenic’s life has been wasted because of misconception and society’s lack of care. This knowledge affects you with a pain so deep it’s inexpressible. Because she’s not really, no matter how you try to steel yourself against this pain, just your schizophrenic.
She’s your sister.
My sister, Trisha, continued on a path to good health until she died in an accident in the mid-1990s. The Tropic article turned into a three-part series of articles because so many people over the years wrote, wanting to know how Trisha was doing. There were some ups and downs, mostly ups. Her story — and her brave, willing participation in the story — helped other families to stand up and demand better care and treatment. Twenty-three years later we can say there are improvements in the system, but there is a long way to go.
For the record, my sister had an aggressive personality, which probably would have served her well in life if she’d been mentally healthy. In her case, while psychotic she did become violent on occasion, not with the intent to harm, necessarily, but without any self-regulation, she was capable of harm. But like the vast majority of society, most people with schizophrenia are not violent and are far more likely to be victims of crime than perpetrators.
The idea of people who have minds that are ill being left to fend for themselves on the streets is unconscionable.National Alliance On Mental Illness: Schizophrenia Available at Amazon: Surviving Schizophrenia by Dr E Fuller Torrey Please Help Find Adam Kellner ¨