Behind the Scenes - Living with Childhood Schizophrenia
I met them for the first time on a playground, and the first thing she did was offer me "fried dog food." This is a game Jani plays, pretending to cook with the sand and wood chips she finds outside. She seemed like any other little girl playing on the playground, but within a few minutes, I could see signs of the schizophrenia. Jani started telling me about her rat, Wednesday; her cat, 400; and the world of Calalini, where all her hallucinations lived. I was surprised to see the amount Jani knew and could explain about her illness. She knows she has schizophrenia. She told me she could see things other people couldn't see. Anything I asked Jani about her illness she was able to explain to me in her own words. She explained that she lived somewhere between "our world" and "her world." Through experience, I also learned some of Jani's triggers...things that set her off. The first day I was there, I called her by her full name, January. This is something that apparently she doesn't like. As sweet as she was to me, that was the first time she screamed: "No! Don't call me that. I am Jani!" In an instant, she was a different child. I didn't call her January again for the rest of the week.
Every night when I went back to my hotel room, I was extremely exhausted but could not stop thinking about the family because I knew that eventually I would get on a plane and go back to Chicago. It made me sad that I could not be there to help them indefinitely. Because when you are there, even for a short amount of time, you can grasp how chaotic and constant their lives are. Jani constantly has to be engaged to distract her from her hallucinations. So I saw how laborious it is for her parents to constantly keep her engaged. They don't have much time to daydream or focus on anything else in fear that in one unattended moment, Jani could potentially hurt herself or Bodhi. I learned a lot from Michael and Susan. I saw parents who worked hard every day just to keep their kids alive and safe...no matter what it took. After spending a week with them, I couldn't get over how difficult a situation like this is on a marriage. I witnessed some of their good times and some of their bad times, but at the end of the day, I could see love. You could tell that they really respect one another, but more importantly, how much they need each other to make it through the day. In the end, they really lean on one another because only they as parents know what Jani and Bodhi need.
By the end of the week, I also learned a lot about a mental illness that I had never known anything about prior to this except for the name. I certainly didn't come back to Chicago as an expert on schizophrenia, but I came back with a better understanding of what children with mental illness are living with. From my perspective, I left wanting to bring Jani's story to the surface to raise awareness for her and for all the other children living with mental illness. Now that I know about it, I can say I have more compassion and understanding. Jani's story is out there for a reason, and I believe she is going to make a difference.