I got very tired of telling people that I do know the difference between a child with an active imagination and one who has come untethered from reality.
I stopped the car at the bottom of a long freeway exit ramp, waiting for the left turn arrow. Carter loves that intersection, home of a small coterie of prairie dogs, and he watched the hill on our left, hoping to see the critters poke their noses out of their holes.
This day, though, it was not prairie dogs that grabbed our attention but a young man, his face and hands dark from sun and dirt, his jacket and pants soiled in a way that can only come from living rough. The man was involved in a discussion, gesticulating and shouting, occasionally laughing, his conversation partner invisible to us.
Carter, eight-and-a-half years old at the time, was twisting his hair with his right hand. He watched the man for a moment, then said, “I think he’s talking to his little guys.” Little guys is what Carter calls all of his visual hallucinations, in spite of the fact that many of them aren’t little at all. The first ones, though, were quite small, an army of tiny, terrifying warriors who populated the stairs in our house. The name little guys stuck, even when some of the hallucinations were gorillas in the bushes of our backyard or amorphous beings he called darkness balls that hid under furniture but could fill whole rooms or cover the sky.
“Yes, I think he’s probably talking to little guys,” I said. I didn’t tell him that, when I see a person like this, a person who is in the grip of florid psychosis, I engage in an internal battle, trying hard not to view that person’s life as my son’s inevitable future. I give them fresh socks, lip balm, and gift cards to fast food restaurants. I write furious letters to lawmakers, begging them to protect these sick, vulnerable people, to provide funding for the programs that would restore their dignity. I pray and pray and pray that I will find ways keep my son safe and healthy; that he will stay alive; that he will sleep each night of his life in a bed; that the bed never be a cot in a prison cell; that wherever he goes and whatever mental illness may do to him, he knows he is beloved.
“He doesn’t have the right kind of medicine to make the little guys go away,” Carter said. Frowning, he whispered, “I feel sad about that.”
I feel sad about that too.
Carter was seven when his therapist told me that Carter was experiencing some delusions and maybe some hallucinations, too, though he’d been unable to asses the depth and breadth of his psychosis. I was aghast because, devastating as Carter’s mental illness had already revealed itself to be, psychosis seemed a horror beyond anything we’d imagined so far.
Psychosis is a disorder of thought, a profound disturbance in one’s perception and understanding of reality characterized by two primary experiences. Hallucinations may involve any of the senses and cause a person to feel, see, or hear things that aren’t real. Delusions are strong beliefs that aren’t true and that most people of the same culture would deem irrational.
My husband and I had a tortuous process in the first months after we knew our young son was psychotic. First, we discovered we had been disciplining Carter for things he did in the throes of delusions, things he believed were protecting his family. For months, we had been beside ourselves with frustration because Carter wouldn’t stop spitting on the stairs. He didn’t spit anywhere else, but every time he went up or down the stairs, he spit several times. As it turned out, one of his delusions was that he had super spit, and he spit on the stairs to protect us from the vicious warriors who hung out there and threatened to hurt us with the weapons they carried.
Are you sure he doesn’t just have a vivid imagination?
Did a doctor tell you that or is it just what it seems like to you?
I got very tired of telling people that I do know the difference between a child with an active imagination and one who has come untethered from reality. I got tired, too, of explaining to people that there is no part of me that wished for my child to be so ill that he couldn’t play in the backyard because there were gorillas in the bushes and darkness balls covering the sky. Mostly, I was weary defending myself, as if I had driven my little boy to a drunken doc-in-the-box for the biggest diagnoses he could think of instead of taking him to a university-affiliated, board-certified pediatric psychiatrist.
It’s been a little over five years since Carter’s therapist made the word psychosis a regular part of our family’s vocabulary, and in general we’ve been fortunate. If we can keep Carter sleeping all night, every night, and if we don’t let his anxiety spiral out of control, and if we identify manic episodes in their earliest stages and manage them, Carter rarely experiences hallucinations. His delusions break through more readily but so far, there’s been nothing dangerous, nothing that requires hospitalization.
There are so many ifs, though. I imagine that man at the freeway off-ramp has some people who love him, living with their own terrible ifs and, much worse, a host of if-onlys. I can only put my head down, do the best I know how to do for my son today, and pray we continue to be fortunate.