WAGblog

Keynote speech

KEYNOTE SPEECH

I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.

A year ago, in September, voices of invisible people, voices no one else could hear, compelled me to pour lighter fluid over my left leg and set it on fire; last February I was hospitalized with similar voices urging me to burn the rest of my body.

By that time I’d been in psychiatric units over 60 times, for a total of at least 8 years. When I got out, I made a crucial decision: I was never going to be hospitalized again. I would do everything in my power to prevent that from happening. Most important of all, I vowed that I’d take every pill and every potion, endure every injection that I was supposed to -- on schedule, at the proper dosage, and as prescribed. That’s a promise I’ve lived up to. Almost without exception.

In April, I was still stable but like raw wood: splintery, unplaned, unsanded. Then I started a new drug to regulate my sleep and give me a stage of sleep that I’d rarely experienced before. Strangely enough, this medication worked wonders for me, sanding, smoothing and polishing my edges: where before I had difficulty making eye contact, couldn’t wear the color red, shake hands or give a spontaneous hug, now I could do so. It felt like this was the miracle drug we’d been looking for to knit all the others together! At last, with the proper combination, you see me now as I think I was meant to be before I got ill. I do know that despite some remaining symptoms, waxing and waning in strength, I am now functioning at my highest level ever.

Medication, medication, medication! What a struggle it’s been. I never wanted to take medication. I’ve fought it all of my adult life. I hated it, hated the side effects, hated what it meant, hated what it said about me. But mostly I hated what it did to me: I hated the dullness, the deadness, the lack of motivation, I hated the terrible feeling of impending doom, the fact that I couldn’t swallow my own saliva, the horrendous sedation, the sixty-pound weight gain, the drooling and shaking -- I hated all of it, and time after time I stopped taking first one pill then another and another...

Predictably I became psychotic again. Nobody could convince me that this was due to stopping medication I felt wasn’t necessary in the first place. Many people feel as I did, feel that the meds are not needed or that the side effects are worse than any disease, if indeed they actually have one. Doctors often assert that mere side effects cannot be worse than the illness itself. The terrible truth is that in some cases, and I know this from personal experience, the medication has to be stopped even when it works because the side effects may be lethal. Side effects cannot be worse than the disease? You tell me.

Another reason why some of us refuse medication is that we are so ashamed of our problems we don’t want to believe we are ill; I kept my difficulties as secret as possible for many years, certain I’d be laughed at, shunned or made to feel degraded, or simply not believed. We feel inferior, we feel put down by people who sneer when they say we are “mental patients,” “schizos” or that our difficulties are “pure fantasy,” the product of an overactive imagination.

Or, perhaps after taking the pills a while, but sometime having taken nothing at all, we feel quite well and don’t understand why others keep telling us we’re sick. Sometimes we feel better than well; in a manic state we feel wonderful. Why should we want to take a pill to bring us down? There are any number of reasons why we don’t want to take meds and not all of them are unjustified. The trouble is, of course, that to the sufferer each one feels entirely reasonable.

When I began our book as a journal, and shared pieces from it on the internet at the newly founded website schizophrenia.com, people struggling with the same difficulties wrote me back and said you put my experience into words I don’t have, told my story, explained to other people exactly how I feel. Slowly, and with a push from E. Fuller Torrey, pre-eminent researcher on twins and schizophrenia, we realized that if my sister and I wrote our story, schizophrenia from the viewpoint both of a patient and her well twin, who is also a psychiatrist, if we wrote about what we have been through, we could give a voice to so many who feel voiceless, sufferers and siblings alike.

And so it is that we offer our book to you, the story of two lives, two twins, as we struggle together against this horrible illness. Schizophrenia touches our families, our friends, our colleagues. It is our hope that you will be moved to read our book, and perhaps come to a fuller understanding of this seriously misunderstood disorder. And with that understanding choose not to mock or fear or reject those of us with schizophrenia but to treat us with the welcome, warmth and respect every human being deserves.