Schofield January - January first: a childs descent into madness and her fathers struggle to save her

Copyright 2012 by Michael Schofield
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Published in the United States by Crown Publishers,
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Originally published in hardcover in the United States by Crown Publishers, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York, in 2012.

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Library of Congress Cataloging-in-Publication Data
Schofield, Michael, 1976
January first: a childs descent into madness and her fathers struggle to save her / Michael Schofield.1st ed.
1. Schofield, January, 2002 2. Schizophrenia in childrenPatientsBiography. 3. SchizophrenicsFamily relationships. I. Title.
RJ506.S3S36 2011
618.928980092dc23
[B] 2011049462

eISBN: 978-0-307-71910-2

Cover design by Megan McLaughlin
Cover photograph James Walker/Trevillion Images

v3.1_r2

For Jani, Bodhi, Susan, and Honey
Thank you for your patience and your faith. I love you.

W hile this is a true story, certain names and details have been changed to protect the identities of those who appear within.

S chizophrenia is a little like cancer. You cant trust that it will ever go away completely. Even if one is asymptomatic, once cancer has been inside your body, the chances of it coming back remain forever until the day you die. Years of trial and error have given my daughter a combination of medications that keep the worst of her schizophrenic symptoms under control. The hallucinations are still present, but now its more like having a TV show on in the background with the volume turned down. Most of the time it doesnt interrupt her functioning in our world. But there are other times when the volume rises and becomes so demanding of her attention that she is lost within that world, unable to differentiate between reality and fantasy.

Four years ago, I was convinced that schizophrenia would take my daughter completely. But by the efforts of everyone in her life, we turned the tide back. We stopped its advance across her mind and turned the volume back down.

Nobody knows what causes schizophrenia. Studies are rare. The prevailing theory right now is that it is a bio-chemical defect in the brain (generally referred to as the Biological Model of Mental Illness), possibly a degenerative neural disorder closer to Alzheimers.

In dealing with it, sometimes I feel as if Im carrying a flashlight around inside a dark tunnel, stumbling, trying to feel my way as I go, praying the batteries wont die until I can reach the light at the end of the tunnel. Needless to say, Ive tripped along the way. Yes, there are plenty of things I regret, moments with Jani I wish I would have handled differently if I could do it over again. Unfortunately, I cant go back in time. I cant change what happened in the past. All I can do is move forward and keep trying to be the father Jani needs me to be.

This book should not be taken as a ringing endorsement of what to do when your child goes to a place you cant understand. Rather, its simply my familys story of trying to find our way out of the dark.

During one stay in the hospital, while my wife, Susan, and I were visiting our daughter, Jani looked down from her fourth-floor window and said, I want to jump down.

I was busy trying to keep our son, Bodhi, engaged with the video game we were playing on a hospital computer. I heard her clearly, but I do what I usually do when I hear things like that: try to distract her.

You dont want to do that, I replied, as calmly as I could. Come here and play with me and Bodhi.

Out of the corner of my eye, I could see she was still looking down.

I want to die, she said softly.

I stiffened. It had been a long time since Id heard her say anything like that. I thought you wanted to live to one hundred, I chuckled nervously.

I want to die at nine.

I reached out for her. Why? Why do you want to die?

She turned to look at me. Because I have schizophrenia.

There was nothing psychotic about her statement. It was actually quite lucid. Jani was simply sad. Susan and I were not sure what to do.

I immediately left a message for the doctor, who checked with her the next day. She repeated the same thing to him. He asked her what she believed it means to have schizophrenia.

I see and hear stuff that isnt there, she told him.

MY FIRST WRITING about Jani was on my Facebook page. I wrote to vent, but soon realized that I was also trying to make sense of what was happening to my daughter and my family. My Facebook posts evolved into a blog, and I started writing more. When our story became public, hundreds of families emailed me, all telling a variation of the same message: We thought we were alone. Encouraged by the inspiration Id gotten and hoping to help other families dealing with similar problems, I formed a private online support group where parents could talk to one another without fear of criticism, primarily from the anti-psychiatry movement, which, though it has many faces, basically denies that mental illness exists. They certainly cannot accept that it happens in children. Nevertheless, from my blog posts they drew conclusions, based on what they believe, that I abused my daughter and that the true cause of Janis condition rests in her parents and how she was raised.

I struggled for years to understand how, in the early twenty-first century, some people, even doctors, could be so unwilling to believe in child-onset schizophrenia. Im still amazed at how many people write to me saying Jani is possessed by demons that must be exorcised. Really, its all the same thing: denial.

But when Jani said to me that she wanted to die, I finally understood where that denial comes from. Some people hang on to the abuse assumption or the demon theory because those things can be controlled. The idea that there is a disease out there that is totally arbitrary is terrifying. If Jani can develop schizophrenia, any of us can. And the idea that all it might take is the crossing of some wires in the brain is more than some people can handle.

I understand. Nobody wants a child to suffer, so we come up with any explanation we can for why it is happening.

But denial is not going to help Jani or any of the other mentally ill and schizophrenic children I have come to know. What they need is acceptance. What they need is for us to be telling them your illness does not define you.

We cannot go inside their minds and fix them. But we can fix the world so they can live in it.

Schizophrenia is not a death sentence. It is a disease that can and must be managed. But it is also just another part of the rich rainbow of humanity.

I want Jani to see that rainbow. And I want you to see it, too.