Most three-year-olds are in bed by now, but most three-year-olds are not geniuses like my daughter. She can read, calculate multiplication and division in her head, and even quiz my wife, Susan, and me on the periodic table using her place mat with all the elements on it.
It's almost 9 p.m., and Susan ﬁnishes her shift reporting news and traﬃc for a radio station in Los Angeles at 7 p.m. Allowing for traﬃc, she's probably just getting home right now, but still I wait. I want to keep Janni out until there is nowhere left to go but home. We've been doing this since Janni was an infant. At that time I would take her to IKEA, where we'd play in the ball pit and I'd throw balls at my head and she would laugh hysterically. When I'm lecturing at Cal State Northridge, it's Susan who's making the rounds with Janni, but tonight I'm on duty.
As I watch her, running ahead of me into the mall, the only place still open at this hour, I wonder how she keeps going. We've already been to the LA Zoo, IKEA, and a McDonald's play area -- anything that will engage Janni's mind, even for a little while. We have season passes to the zoo, and her favorite part is when we go under a tunnel and then pop our heads up into the ground like prairie dogs. Janni loves dogs. She'll even call people "dogs," which I worry someone might take the wrong way.
She has to be well past the point of physical exhaustion by now, but if she is she doesn't show it. Not that it matters. It's not her body. It's her mind. I have to wear out her mind. That has been the only way to get her to sleep since she was born.
The mall is almost empty, which is a good thing. The fewer people the better.
Janni storms into a toy store, one of the high-end places that sell classic toys. The clerk comes over to us.
"Can I help you?" she asks.
"No, thanks. Just looking," I say, wanting to get rid of her as soon as possible. The last thing I want is for Janni to start talking to her. Janni doesn't talk like your average three-year-old.
The clerk nods and starts to walk away, but to my dismay Janni follows her.
"I have seven rats at home," Janni tells her.
"Wow," she replies, surprised. "You have seven rats?"
"Yep." Janni nods. "I call them Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, and Sunday."
Then comes the part I hate the most. The clerk looks up at me, a questioning expression on her face. She is looking to me, the dad, for conﬁrmation of this incredible fact. One rat she could understand, even two or three, but seven? Except that we don't have any rats. Every single one of them is an imaginary friend.
Janni's ﬁrst imaginary friend, a dog named Low, appeared right before her third birthday. Then came a cat named 400. By now, I've lost count of how many she has. They all come from a place called Calilini, which Janni describes as a desert island oﬀ the coast of California.
Normally, this would be no big deal. Everybody knows that little kids have imaginations. But Janni gets so angry when I dismiss her friends like that. She looks at me like I've betrayed her.
I open my mouth, about to say, Well, we don't really. They're actually imaginary rats, but I see Janni turn to me, awaiting my response. Right now, she seems content. If I tell the clerk the truth, I know what will happen. Janni will emit one of her earsplitting screams. Then she'll grab things oﬀ the shelf and throw them on the ﬂoor. I will tell her to pick them up, because I really do try to reinforce good behavior. But then Janni will say, No, like a petulant teenager and run out of the store. I'll call, Janni, you need to come back here and pick this stuﬀ up! but she'll be gone. Then I'll have to abandon the mess she made and chase her for fear of losing her. I will come out of the store and see her about a hundred feet down the mall, looking back at me, waiting.
It suddenly occurs to me... Why do I have to tell the truth? This woman is never going to come over to our apartment. She will never know that we really don't have seven rats. Why make Janni feel more diﬀerent than she already is?
I nod and spread my hands in a Yes ... I know it's crazy expression. "That's right. Seven rats."
She shakes her head.
"Wow." Her eyes widen, giving me a look like I'm nuts, but I don't care about that. I just want to keep the peace.
I come over to Janni.
"Okay, Janni, let's go." I rush her along to avoid digging a deeper hole for myself.
"Do you want to meet Friday?" Janni suddenly asks her.
Oh, shit, I think nervously.
"Come on, Janni. We have to go. We need to get home and feed our rats."
The clerk looks at Janni, confused.
"Do I want to meet Friday?" she repeats.
"She's one of my rats," Janni says earnestly, her face completely straight. "I have her right here in my pocket."
The clerk looks up at me in horror.
"You have a rat with you?! You can't bring animals into the store!" She moves toward the phone on the counter, ready to call security. Dammit!
"It's okay," Janni says, chasing after her. "She won't bite." She comes up behind the clerk and holds out her empty palm. "See? She's a nice rat."
The clerk stares at Janni's empty palm, the phone halfway to her ear, before she realizes what is happening.
Finally, she chuckles nervously. "Oh, my God," she says, looking over at me. "She had me going there for a minute. I thought you really had a rat with you."
"We do," Janni says, her face totally serious. "We brought Friday. Here she is." She extends her palm into the clerk's face, as if she's nearsighted.
"Janni, come on," I call, desperately wanting to leave. The clerk smiles and pretends to pat the rat.
"He's a very nice rat," she tells Janni.
I wince. I can hear the condescension in her voice. She is treating Janni like every other child, believing Janni isn't smart enough to know she's being blown oﬀ.
"She," Janni corrects.
"She." The clerk nods, looking up at me with an expression I get all the time: Your daughter has a wonderful imagination. Then she smiles at Janni.
"Do you like to pretend?"
Janni doesn't answer. I see a look of frustration come over her face. Suddenly, she grabs several classic wooden games oﬀ the shelf and throws them down on the ﬂoor.
"Janni, stop that!" I run over and grab her hands to stop her. She pulls free and runs deeper into the store, pulling items oﬀ the shelf and throwing them down.
I chase after her. "Janni!" But I know it doesn't matter what I say to Janni now. She won't stop. I will have to drag her out of the store. I'm angry at Janni, but even angrier at the stupid clerk. Why couldn't she just play along? I know it's unfair of me to expect the world to play along with Janni's imagination. But that doesn't stop me from wishing they would.
(STORY CONTINUES BELOW PHOTOS)
Schizophrenia is a little like cancer. You can't 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 it's more like having a TV show on in the background with the volume turned down. Most of the time it doesn't 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 Alzheimer's.
In dealing with it, sometimes I feel as if I'm carrying a ﬂashlight around inside a dark tunnel, stumbling, trying to feel my way as I go, praying the batteries won't die until I can reach the light at the end of the tunnel. Needless to say, I've 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 can't go back in time. I can't 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.
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 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 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 isn't 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 I'd 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 Jani's 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. I'm still amazed at how many people write to me saying Jani is possessed by demons that must be exorcised. Really, it's 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.
Adapted from the book "January First," by Michael Schofield. Copyright © 2012 by Michael Schofield. Published by Crown Trade, a division of Random House, Inc.
* Janni's name was changed to "Jani" in 2009.