The following is the speech I gave to the Connecticut MHA lat night. Some of you may have heard me speak before and some of this may sound familiar, though a large part of it is new and the other parts of it have been mostly rewritten and redone. I posted it on my blog at schizophrenia.com so it also may be redundant if you already visit me there! :)
I would do more public speaking if only my twin sister Lynnie wanted to. Alas, she actually works for a living and doesn't need or want to take the time to drive or fly to the many places we'd have to go to in order to do so. Too bad. I may be very shy with crowds and unable to handle strangers. But once I get up behind the podium, I do really well! Don't ask me why or how, but even an audience of hundreds doesn't faze me...Anyhow, here is 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, which is what you are supposed to say. Psychotic. But 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 wouldn’t be standing here to day without them.
Hello Pam,
That was a great speech.
You should consider doing public speaking without Lynnie, if that's possible.
Look forward to more of your posts.
Chris
I would do speaking without Lynnie but alas, I do not drive, cannot drive very far and I don't know how I would get anywhere. I suppose Karen or Josephine could drive me...I dunno. Who would want me, alone? But maybe, maybe. Do you know how I could get started?
Pam
Hello Pam,
You could take car service to and from the airport.
You could use a cell phone to keep in contact with Dr. O.
You would schedule your lectures at the beginning of the year and pick and choose where you'd go
Perhaps a trio or quartet of those of us who have schizophrenia could go on a lecture tour together, like the "Monsters of Rock" concert tour. We could the three or four of us do a presentation. The option is to create a workshop or session for the 2009 NAMI convention in San Francisco, in which we talked about our recoveries.
Like a rock-n-roll tour.
Cheers,
Chris
Not a bad idea at all...a group tour! That would much allay my fears of traveling alone, I must say. Maybe we could do a book tour together, you with your memoir and me with my poetry book! :)
Anyhow, I would consider a speaking tour, but where and how does one set up "gigs"? and do you get paid? We usually did, though Lynnie was the only one who did...We also were always "treated" to room and meals free, which was the only way I could travel, having absolutely no income to speak of that I could spend...
That was maybe not during the booktour, I dunno, but certainly after the initial "blitz" when we were asked simply to speak.
Pam