October 29, 2005

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, 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.

Posted by pamwagg at October 29, 2005 06:57 PM


where are you, Pam?

Posted by: Sam at November 24, 2005 12:02 AM

It appears to have been corrected.

Posted by: Paula Kirkpatrick at November 21, 2005 11:13 AM

Hi, Pam,

I am reinstating my name to be remembered.

Posted by: Paula Kirkpatrick at November 21, 2005 11:11 AM

It's not the side-effects. It's not the ashamedness. It's the fact that I can literally feel the meds switching off parts of my personality. Yes, they manage the illness, but at the cost of my no longer being myself.

I like being me.

Perhaps at some point in the future they'll invent a drug that can push the alien overlords out of my head without pushing the more essential bits that make up 'me' along with them.

Anyhow, I enjoyed your post and I certainly know where you're coming from. :-)

Posted by: Sean at November 17, 2005 01:58 AM

Bravo Pam. Your words comfort me.

I am happy for your success. Keep up your words. They are helping many.


Posted by: Moeder at November 2, 2005 08:44 AM

Hey Pam,

We all do suffer at times, some fo us more than others; but despite this suffering we keep moving, we stay alive, I dun know for what? but we do. From my suffering, I can't even imagine how difficult it must be for schizophrenics and it' because of this that these people do have a lot to inspire us. They really illustrate the ability of life to survive difficult times. They show us that life stubbornly and rigidly faces all the difficulties it encounters and still persists, in the hope to overcome them. You people are lot more braver than most of us out there.

God bless you. Take Care

Warm Regards

Posted by: vish at October 31, 2005 02:32 AM

Pam, I'm sure that your book will make a difference. And I'm dead sure that it has all started moving people's views towards a positive note. I would personally like to thank you for this wonderful effort that affects all of us suffering from schizophrenia. My warmest thanks, regards, and wishes. In liberty, tc, love, puzli

Posted by: puzli at October 30, 2005 01:38 AM

Dear Pam,
From the very first letter I received from you in response to a stranger congratulating you on winning the BBC International Award for Poetry,I was immediately captivated by the warm, spontaneous person who would from that day to this, be my friend. I did not know that you were schizophrenic when I wrote to you, and when you immediately and candidly told me that you were, it made no difference to me whatsoever. Our unique friendship has enriched my life in a way I could never explain, nor would I try. If I have a label for you, it would be what we have remained for years now. I would simply call you my dear and precious friend. You take my broken pieces and carefully put them together with wisdom and grace. For this, I thank you and I love you.
With highest esteem, Paula

Posted by: Paula Kirkpatrick at October 29, 2005 09:39 PM

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