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Q: From her early infancy, it was clear that your daughter January (“Jani”) was unique and brilliant, even testing with an IQ of 146 at the age of four. When did you begin to think that Jani’s differences might be related to an illness? A: When other parents would suggest that something was wrong with Jani, I ignored them, but inside their suggestions made me angry. To me, Jani was a genius, and throughout history most geniuses have been misunderstood.
It wasn’t until the violence began around the time our son, Bodhi, was born that I had to face that there was something wrong. During those moments of sudden, intense violence, like what I describe in chapter 5, I would hold Jani down to keep her from going after Bodhi, and I would try to get her to make eye contact with me to calm her down. And when she would look into my eyes, I didn’t see my daughter there. I saw something else. But even then I still clung to the belief that this violence was coming from being a genius trapped in the body of a small child. For me, the moment that I finally had to accept there was an illness was the first time I went to visit Jani at BHC Alhambra Hospital. She’d never been away from either Susan or myself, and I fully expected her to be terrified. But she wasn’t. She was happy, happier than I’d seen her since she was a toddler. It was like she had finally found the friends she’d always wanted, only she found them in a psych ward.
Q: How has your marriage to Susan evolved since Jani’s birth? How have you learned to cope as a couple in the face of Jani’s schizophrenia? A: We almost didn’t make it. Because Jani needed constant stimulation and we had no family or friends who could provide the level of stimulation she needed, Susan and I began to see each other as the “relief shift.” We either worked or we had Jani. There was nothing else. And taking Jani was much harder than working, so whichever parent had Jani would get increasingly resentful.
When the violence and hospitalizations began, we turned on each other constantly, dragging up and throwing in each other’s faces every mistake we had ever made with Jani. I think that when you feel like you are losing your child to something you can’t identify and doctors have no answers, you start to turn on everyone around you. What saved our marriage was the realization that whatever Jani had was not just her “misbehaving” and that she needed both of us to fight for her. I think it was fighting the school district that really made me feel as if Susan and I were a team again, both focused on the goal of making sure Jani was happy. So the irony is that while the stress of
Jani’s still unnamed illness nearly destroyed our marriage, it was also the very thing that saved it. We held together for Jani and Bodhi, and because of that, our marriage transcended the normal relationship. We are both totally committed to the cause of childhood mental illness. We have both sacrificed our own needs for the good of the children and will continue to do so. Susan is more than my wife. She is my partner and my friend. And there is nobody else I would have wanted to go through this with. I could never feel about another woman the way I feel about Susan. She fought and continues to fight a war with me against Jani’s schizophrenia. We are bound by something far deeper than a wedding ring.
Q: You have encountered many different treatments for mental illness through your experience with Jani. In your opinion, what are some of the strengths and failings of how we treat mental illness in the United States? A: Without question, the biggest problem in America is the perception that all negative behavior is caused by a moral failure. Nobody questions a physical illness, because the symptoms are clear. But because the primary symptoms of mental illness are behavioral, it is easier to dismiss them as a moral failure of the child, laziness on the part of adult sufferers (e.g., the homeless men and women you pass on the street every day), or bad parenting. Mental illness and those who have it are not treated the same as those with a chronic physical illness. Despite “parity” laws, insurance companies and Medicaid still deny mental health care to kids and adults who desperately need it. Mental illness needs to be treated as a chronic illness that can be managed, like diabetes. Kicking patients out of acute psychiatric centers because insurance won’t pay and not having any community resources to help those who suffer from psychosis will only lead to more tragic cases like Virginia Tech and the Tucson shooting. As a society, we must understand that those with a mental illness are no different than those with cancer. Any violence is a symptom of their disease. Treat the disease and you treat the violence. Q: What are some of the difficulties that you’ve come across while trying to tell your story, especially as some critics you’ve encountered have questioned Jani’s diagnosis? A: I was most surprised at the number of “armchair diagnosticians” who would analyze Jani’s condition based purely on what they’ve seen of us on TV. I don’t think it comes from a malicious place. I think the idea that a little girl could have schizophrenia, the worst mental illness known to mankind, is frightening. If Jani could get it, anyone could. So people try to come up with any other possibility because they want to believe that Jani can be “cured,” whether that cure is exorcism, a gluten-free diet, giving Jani marijuana or LSD, or psychic help to communicate with transdimensional beings. But at the end of the day, it doesn’t matter. Jani has schizophrenia. Regardless of what caused it, there is no going back in time to change it. We can only go forward and help her find happiness and fulfillment in this world. And as a country we need to be focusing on is how we can improve the quality of life for all mentally ill children and adults, not chasing empty cures because we don’t want to face our limitations as humans. Q: How has Jani’s illness already changed over time? What are some differences in her behavior from her diagnosis to the present day? A: She is learning to make peace with her illness and what she needs to do to keep it under control. She can better recognize her external triggers. She knows what will set her off and will tell us if she can’t do something. She will also work with herself to get over irrational fears. We are very careful not to push her, because stress is a trigger for her psychosis. She still hates taking meds but understands what will happen if she does not. We have shown her the
connection between homeless mentally ill people who cannot afford insurance and the schizophrenia that has taken complete control over their lives. We also show her the positives of her medication. Thanks to her medication, she now walks up to other kids and asks them their names and how old they are. She still sees all of her hallucinations, but she is capable of talking about other things, which is critical for her to be able to interact with neurotypical children.
Q: What do you see in store for Jani’s future? Do you know how her treatment and medication will change over time?
A: We stopped thinking about the future during the worst of Jani’s acute stage, both because we needed to get through each day and because the prognosis was not that great. Schizophrenia is worse the younger it strikes because the child has not had time to develop social and cognitive skills. The medications are less effective in children than they are in adults. So for Jani to have come as far as she has is, in fact, a medical miracle. To go from such a severe case to the level of functioning she now has is a testament to all the people, including us, who refused to give up on her. I see Jani continuing to get better. Do I think she will ever be completely “free”? No. That’s not what we see in adults with schizophrenia, even those on medication. Life will always be a struggle for Jani, even as new medications become available, but we will continue to do what we have to do to keep her alive and give her as many opportunities for happiness as we can.
MICHAEL SCHOFIELD teaches writing courses at California State University, Northridge. He keeps a blog of his family’s journey through Janni’s schizophrenia at Janisjourney.org.