Saturday, September 1, 2012

Read, January First

Jani Schofield is a nine year old girl with Schizophrenia. I've been following her story for several years now. Her father has written a very brave book about his journey with Jani, which was released earlier this month. January First: A Child's Descent into Madness and Her Father's Attempt to Save Her, is a gift to us all, as it offers insight not only into the world of Jani and into the world of her family, but also into the world of mental illness.

Jani Schofield was diagnosed with Schizophrenia at the age of six. Doctors initially thought she might have been experiencing symptoms of Autism. It is a disorder that must be ruled out before a diagnosis of childhood Schizophrenia. Childhood mental illness is thought of as rare and some believe it doesn't exist.

Non-believers have insisted that they know better. Opinions from the internet have come flooding in, ever since Jani's story went public years ago. Some believe Jani is not mentally ill but rather possessed by demons; some believe that her experiences are a result of bad parenting; and some believe that Jani simply has a wild imagination.

Michael Schofield and his wife Susan Schofield have known that something was off from the very beginning. In the book, Michael Schofield reports that Jani never really slept as a child. Perhaps twenty minutes at a time, totaling two to three hours a day. He and his wife observed her following images across the room when she was a tiny baby, and when she was three months of age, her parents found that they couldn't get her to stop screaming unless they took her outside. They spent most days outside. When she turned five she became violent. She'd try to kick, hit and bite, without warning and when she stopped she couldn't remember what had happened.

Jani eventually became aggressive towards her younger brother Bodhi (named after the tree which Siddartha sat beneath) and it became so dangerous that her parents moved into two single bedroom apartments which they named "Jani's apartment" and "Bodhi's apartment."

Jani experiences auditory, visual and tactile hallucinations. She sees and hears animals, and numbers and at times she will feel like she's having diarrhea. Some of her most prominent hallucinations are 400 the cat and Wednesday the rat. 400 and Wednesday they are "bad." They scratch her and tell her to hit. 24 Hours is a girl and as of now she is Jani's only human hallucination. Jani and her hallucinations reside in Calalini. She once said to Oprah in an interview; "Calalini is on the border of my world and your world."

Jani's parents amaze me. They are devoted to their children and when you read this book, you will get a glimpse at just how much they have overcome and endured. I don't know how they do it, but they are rock stars, for sure.

Jani receives a lot of support from occupational therapists and school teachers. She is also taking really intense meds. Thorazine, Lithium and Clozaril. As a psychiatric social worker, I have a basic understanding of Clozaril. It is often used as a last resort and in many cases it is the magic bullet. A possible side effect with this med is that it can affect the bone marrow to where it stops making white blood cells. This is called Agranulocytosis. Because of this possible side effect, patients undergo weekly blood draws to check their white blood count. Although, Jani will always have symptoms of schizophrenia, the meds are helping.

Excerpt from the book:

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 the hospital computer. I heard her clearly, but I do what I usually do when I hear things like that: I try to distract her. "You don't 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 I'd 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 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 isn't there," she told him.
If you choose to read, January First, you might want to take a moment to ask yourself why you're reading it. Maybe you want to read it for entertainment purposes, perhaps you want to learn about Childhood Schizophrenia, perhaps you are in the mental health field as I am, and this kind of thing is an on-going interest for you. Perhaps you want to read it so you can fire back and the Schofields and tell them how much you disagree with their parenting skills. I hope you will refrain from the latter.

Jani is unique and so is her illness. Although, Schizophrenia affects many, it hits each person differently. The good news is that in many cases Schizophrenia can be managed in some way.

One thing I stress when I speak about mental illness is the concept of stigma. Those who have little understanding of mental illness might refer to a mentally ill individual as "crazy." That hurts. It also hurts my feelings when I hear fellow clinicians use the word, "crazy." We are not crazy, we are sick. The depressed, the anxious, the panicked, the psychotic, the compulsive. Sick, sick, sick, sick, sick.

When you see a person talking to themselves on the street; do me a solid (and yourself) and refrain from calling them "crazy." Refrain from thinking that they are less than you in some way. It is bad for those of us who are working towards recovery, bad for humanity and it is bad for your spirit.

Do not refer to a person with Schizophrenia as "Schizophrenic." Although, Jani's parents do this and so does Jani, a person is not their illness. Jani HAS Schizophrenia, but is not Schizophrenia.

I'm hoping that January First will assist not only those who are in denial about mental illness, but those who have loved ones who are mentally ill. I've worked with families who feel confused and hopeless as they don't know what is happening to their loved one(s). They don't always know how to help.

In some cultures mental illness is frowned upon and in some cultures there are no words for mental illness. I've worked with translators who can only describe mental illness as a sickness of the brain. Well, that could be anything, couldn't it?

Mental illness is very real and the more we learn about it and research it, the better. If that happens, perhaps society will take it seriously. Insurance companies don't give much thought to it. It's not viewed in the same light as a physical ailment.

And then there are those who condemn psychiatry completely or believe that mental illness can either be cured with vitamins or that it doesn't exist. The mental health field is not without its problems and the history of psychiatry is pretty horrific. We've come a long way, and my hope is that people like Jani, will be taken more seriously.

Thank you kindly to the Schofield family for sharing your story.

To follow Jani's story, visit Michael Schofield's blog, Jani's Journey.

Jani Schofield's Story - New York Times


NAMI (National Alliance on Mental Illness) - Education and support for those suffering with mental illness and for family and friends who support them.

NIMH (National Institute of Mental Health) - Learn about the research and treatment of mental illnesses.

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