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The following is for those of you who have not yet seen or heard us speak or read my speech as posted elsewhere on the blog. Even so, if you have read the original speech written in 2005-6 and recognize some familiar parts, you will see if you proceed that there is also much that is new. I promise to tell you all about the gala event either later or tomorrow, but for now, I thought I'd post just the speech.
I am a poet. Metaphor means more to me than money. Similes make me smile. But sometimes mental illness, for which there is no adequate metaphor, defeats me.
Having schizophrenia in this world is like living, along with three million other people, in a desolate, dark little room with a large padlock on the door.
The room is stigma, the darkness is fear and the lock is ignorance.
I’d like to speak to you today, having been ill for more than thirty-five years, about fear, ignorance and stigma, tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.
Medication. Why on earth would I take medication? Medication meant I was sick. I feared being labeled crazy, I feared the very idea of that label. But what I feared most were the side effects...Never mind what medication did FOR me, I hated what it did TO me. And it did it to me for many many years.
What was so terrible? For starters there was dullness, deadness, lack of motivation, dry mouth, stiffness, shaking, agonizing restlessness, movement disorders....And that was just with the old drugs. Then came the so-called atypical drugs and feelings of impending doom, an inability to swallow my own saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Is it any wonder that time after time, I stopped taking them?
You know what happened, right? I went crazy again, I mean, psychotic...You are supposed to say, "psychotic" even though I really went crazy. People with schizophrenia are faced with this all the time. Either they refuse meds and stay psychotic or they can suffer side effects that may feel horrendous. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.
The right medications can help, though. My doctor worked patiently with me for five years and through innumerable hospitalizations to finally find a 6- drug combination that works without side effects. It made the difference between chronic illness and recovery. I admit I wouldn’t be standing here to day without them.
But “medication compliance” may be iffy for other reasons as well. Some take medication when they’re scared and psychotic, then stop it once they feel better, only to get sick again. This sets up a destructive cycle into which many have little insight. Other people with schizophrenia don’t believe their difficulties constitute an illness. If the CIA and FBI control me through a microchip implanted in my tooth, how will any pill solve that?
If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how indeed is medication even relevant? The solution is to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper.
I asked my dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered with something like, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.” The technician, on the other hand, passed over the tray of probes then backed a safe distance away. Stigma.
Did you know that stigma originally meant the brand from a hot iron that they’d burn into a wrongdoer’s face as a mark of shame? That’s why many young people won’t take medication. Because it sets them off from their peers. It brands them as different. But all of us with schizophrenia are stigmatized when people mock “mental patients” or “schizos” or imply that we’re axe-murderers just waiting to happen.
Ignorance plays a big role in stigma. Exactly one hundred years ago, Clifford Beers wrote of being locked in hospital rooms and treated with such cruelty he considered it torture. Because of this experience, he went on to start the mental health movement. Much has changed, but much remains to be done.
Beers was wrestled into strait-jackets. I’ve been kept, sometimes for days, in four-point restraints. Do you know what it’s like to be grabbed by a goon squad of who knows how many people, slammed onto a bed and forcibly shackled to it, hand and foot, at times even your chest restrained so that you can barely breathe? If that sounds awful, it is. It is.
Beers later wrote: “In every institution where the discredited principles of ‘Restraint’ are used or tolerated the very atmosphere is brutalizing...[In such places] the gentler or more humane methods of persuasion will naturally be forgotten or deliberately abandoned.”
I suspect in fact that it’s mostly ignorance of better ways to handle things rather than a shortage of staff that has many hospitals still using restraints in this day and age. The gentler modes of persuasion, as Beers suggested, have indeed been forgotten.
The effect of ignorance is also the stigma that keeps us locked away where no one has to see or acknowledge us. Out of sight being out of mind means we can be secluded or restrained. Mayors can clean city streets of us and put us away in shelters, supposedly for our own good. We can be arrested for minor infractions and the crime rate lowered. But someone needs to stand up and ask where we’ve gone. Have we been sheltered or imprisoned, have we been helped or just hidden?
In September 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, skin grafts, the whole terrible shebang. February 2005 back in the bin. I’d spent a total of 8 to 10 years in the hospital by then. This time voices were ordering me to immolate myself, a whole body sacrifice to atone for countless sins.
That was it. I’d been tied down, locked in, shot up and kept inside too much to take it easily again. I had to decide: live or die.
One evening, Lynnie visited. She was tired of it all too. She said, “Listen, this is what I tell my patients: You can always go down the old familiar road. You’ve taken it a million times. Why don’t you try something new for a change?” She called this ‘bushwhacking,’ and it had nothing to do with George W. Bush. I could always switch back to my old way. It was always there. But bushwhacking a brand new path for myself might bring me somewhere I liked better.
It’s still a mystery to me why this took. Maybe I just had to be ready to hear it. I decided I would try her advice. What did I have to lose? My newly bushwhacked path was to follow my doctor’s orders and take every one of the medications prescribed me, as prescribed, without skipping a single dose. For a while at least, see where that got me.
This is where it got me.
You know, a lot of ordinary living passed me by in 35 years. I never dated. I didn’t marry. I haven’t held a paying job since early adulthood. But since 2005, when our book was published, I have learned a lot I did not know about how to live in the world. I have gained friends and lost one I loved. I have learned to drive again. I have become an artist. Recently I had a second book, poetry this time, accepted for publication next March.
What comes next is something no one can say. But for the time being alive and well, I look forward to all of it
Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember – and this is for anyone who has ever taken piano lessons: it’s all in the wrist.
Those are not bad lessons, and you can learn them from the same people once kept locked away in that dank little room. We have so much to teach you.
Posted by pamwagg at May 7, 2008 08:56 PM
That’s what I mean, you see. Don’t leave us in the dark: amazing things can happen when the doors open and the walls come down.