When I first wrote about now 10-year-old January Schofield, the little girl had been recently diagnosed with schizophrenia and was on heavy-duty psychiatric medications. Her father, Michael Schofield, was blogging about his experience raising a child with a severe mental illness, and his writing was controversial, to say the least. There are valid questions to be asked about such an unusual early diagnosis: How do we know at that age if hallucinations aren’t simply the product of a very creative brain? How do we distinguish between a difficult child and a seriously ill child? How do antipsychotic medications shape a developing brain?
I was most concerned, though, by her father’s control of her story. He was able to construct January (nicknamed Janni, then Jani) as a character on the blog and define the course of her illness through his eyes. It’s not a problem now, when she’s little. But one day, this brilliant child may not want to be known as the face of childhood schizophrenia. It’s a Honey Boo-Boo situation, but with a medical twist.
Too late to worry about that now, it appears. Michael Schofield has just published a book: January First: A Child’s Descent Into Madness and a Father’s Struggle to Save Her. The resulting media coverage has been unenlightened and depressing.
Here’s the New York Post headline about the book: “Her world is illusion. Voices tell her to kill. She is schizophrenic. Her family is terrified. She is 9 years old.”
Here’s a passage quoted in a Fox News article:
“My mind shifts to what life is like for schizophrenics, and it terrifies me,” Schofield wrote in the book. “(She) will probably never be able to go to school, let alone college. She’ll never have a boyfriend or get married. … I look down at Bodhi. He will never have a normal big sister.”
This is an excerpt quoted in a different publication:
There is no cure for schizophrenia. Janni will have it for the rest of her life. I don’t mourn for shattered dreams of Harvard or Yale or for the Nobel Prize. I mourn for Janni never being the big sister to Bodhi that we all wanted her to be. And I mourn for Janni herself.
This is all ridiculous and overwrought. There are plenty of people who have been diagnosed and treated for schizophrenia who go to school, go to college, and get married. And as Schofield surely knows, the most famous American with schizophrenia, John Nash, did win a Nobel Prize.
Such passages, I imagine, come early in the book. I’m hoping he’s beyond all that self-pitying crap about shattered dreams by now. There’s every reason to believe that if anyone can succeed despite an illness, it’s January. We’re talking about the daughter of healthcare-savvy, devoted parents. She’s part of a public narrative that almost guarantees she will matter to people beyond her family circle. Compared to most people diagnosed with schizophrenia in the U.S., she is at a distinct advantage.
But the media coverage of the book promotes the notion that Schofield imagines his daughter’s future as a black hole of padded rooms, which makes the average reader see the diagnosis as a death sentence. In fact, long-term studies that have followed patients after release from psychiatric inpatient facilities show a different picture, with recovery rates ranging from 34 percent to 60 percent. Granted, 100 percent would be better, but the reality is, recovery is possible. Shifts in the mental health-care system—called the transformation—substantiate this new reality.
The best thing a parent of a child with a mental illness can do is to hold onto the hope the child no longer has, to insist that their child will be part of the 34 percent. That’s what my parents did: They were relentlessly insistent that I could get well. If they had conversations privately about how I’d never finish my PhD, never be a good sister, never get married, that’s something only they know—because neither of them chose to write a book about my illness. That way, when I wanted to tell my story, I told it msyelf.