I started a blog post on Saturday. It was about how I feel like someone is standing on my chest, how sometimes the weight of the world descends upon me and I feel suffocated. All of that seemed very important until yesterday when, for the first time, Carter opened up about his psychotic world: the characters who populate it, his role, my role, and much more.
Gobsmacked is the best word I can think of to describe the way I feel. I had no idea about most of this. Brian and I have been operating under the assumption that Carter’s hallucinations made only the rarest of appearances. He is typically very reticent to talk about hallucinations and delusions, probably because we have a terrible habit of acting very worried when we know Carter is psychotic. I find it unbearably annoying when I think people are worrying and fussing over me and I think Carter feels the same way. From now on, we’ll have to try to do our worrying in private so he’ll keep talking to us.
I don’t think Carter meant to tell me any of this. I mean, he didn’t wake up yesterday morning and decide, “Hey, great day to let Mommy in on a few secrets!”
No, he was walking past the door to Abbie’s room, which was slightly ajar, and was visibly startled, even letting out a little scream. He saw me watching him and said, “That guy doesn’t usually scare me. He doesn’t do much most of the time, but he startled me just now.”
Somehow I kept my face neutral, but I was stunned. Except for overwhelming anxiety, Carter seems very stable right now. How the hell is he hallucinating if he’s not manic?!?*
That’s a question for his psychiatrist, who we’ll see tomorrow. Obviously this will mean a change in Carter’s anti-psychotic medication, but I’ll try, for now, not to think about that. I hate making med changes. In the meantime, I’m going to take you on the same tour on which Carter took me. It’s a strange world. Turns out, things are lots more crowded around here than I thought.
This is one of two guys who live in Abbie’s bedroom, the one who startled Carter. He’s not very scary and Carter even says he’s a little funny sometimes, so it’s fine with him if he stays where he is.
While he lives in Abbie’s room, Carter sees him in other places, too, but the interesting thing about that is how he gets around: he travels behind Carter’s eyes. Carter doesn’t know that he’s there until he comes out, right through his eyes. I grimaced or shuddered (probably both) when Carter told me this, but he assured me that no, it wasn’t unpleasant at all; there’s only a slight pulling sensation.
He doesn’t have a face which seems to work just fine because he doesn’t do anything. He likes to hang out. The guy he hangs out with (who also lives in Abbie’s room) is a character from Fraggle Rock and is Carter’s only hallucination that he didn’t build from whole cloth.
I have no idea what could possibly be scary about this little thing (Does anyone remember what these are called?), but this is a bad one.
This hallucination, like all of Carter’s hallucinations, has no name. Wait, back up: a very brief introduction to psychosis starts now. Psychosis is an altered perception of reality, the primary features of which are hallucinations and delusions.
Hallucinations are perceptions in any of the five senses that have no external cause. Most of Carter’s hallucinations happen in his senses of sight and touch, occasionally in his sense of hearing, never in his sense of taste, and very rarely in his sense of smell.
Delusions are false beliefs that remain firm in spite of evidence that the beliefs are untrue. The majority of Carter’s delusions involve super powers (super spit, electric hair), though he has more and more paranoid delusions as time goes by.
Back to the nameless hallucinations: most of them never speak to him, and all but one (I’ll get to him in a minute.) only say things to get his attention, like “Hey, kid!” or “Carter!”
As Carter was telling me about all these little guys, I kept asking, “What’s that one’s name?” or, “What are those called?”
Finally, Carter snapped at me, “They don’t tell me their names! How would I know their names if they don’t tell me?”
These are two of dozens of little guys who live on our stairs. Some of them are naked, some wear clothes. Some look nice, some are gross and ugly. The one above is furry all over and wears blue jeans, a red shirt, and carries a handgun. The one below wears nice pants with armor on the top and carries a bazooka. All the little guys on the stairs carry weapons, apparently unaware that we’re a Mennonite family and that shit won’t fly. Sometimes, the guys on the stairs are mean and try to hurt Carter, and sometimes they play games and amuse him.
These guys have been around for awhile and were the only ones I knew about until recently.
This next guy lives in one of the closets in my bedroom and is a scary, hateful beast. Carter told me, “That pink guy is the one I want to go away the most. I hate him!”
First? I was scared of the bogeyman when I was a kid, too. I was afraid to get out of bed during the night for fear that the monster that lived under said bed would bite my ankles. I knew there was no monster; I knew the whole notion was ridiculous, but I jumped out of bed nevertheless, trying to gain a little distance between my ankles and that damn dark space between the bed and the floor. I never saw this monster; it never said anything to me; I knew it didn’t exist.
For Carter, though, it’s all different. First is the obvious: he actually sees his bogeymen, and though they rarely speak to him, they will make sure they get his attention if necessary. Remember, if you will, what it’s like to be seven years old. Imagine for a moment that your bogeymen were visible. That right there is enough to make me weep for a month for my boy who lives in a terrifying world, where monsters might show up at any moment.
The second difference is that Carter isn’t quite sure if they’re real or not. If I ask him if these guys are real or pretend, he says they’re pretend, but sometimes he asks me why he can see them and I can’t. I answer him with some variation of, “They come from your own mind, Carter. Your brain and your eyes get a little confused and see things that aren’t real.”
Well. Either I said the world’s stupidest thing, or Carter is more psychotic than I thought because he insisted that, while all these guys are pretend, somebody else is pretending them. They come from the imagination of some kind of super-being (Not God; Carter assures me that God has nothing to do with any of this.) who Carter has never seen.
Toto, I don’t think we’re in Kansas anymore.
This guy is a disembodied skull who lives in our dining room. He’s way bigger than my head and floats to get where he wants to go. This one is more mobile than the others because, while he is most often found in the dining room, Carter sees him regularly in many places, including our upstairs hall bathroom, the park, friends’ houses, and the bathroom at school.
I asked Carter why these guys are here and what they want. He told me that they want to suck out his powers because, while many of them have weapons or powers of their own, none of them have electric hair, a supersonic boomerang, or the ability to shoot lava out of their fingers.
Carter calls this a darkness ball. There is one that lives under the futon in my bedroom, one that lives behind a chair in our living room, and several that live in our backyard, but they can show up anywhere. Carter hates the darkness balls and says the only one scarier is the pink guy who lives in my closet.
There’s just one last guy, the only one who talks to Carter and who is invisible. He’s the only one Carter likes and though he’s nameless, Carter says he’s a friend. This guy likes most of the same things that Carter likes except for chocolate and riding scooters. Mostly, they play Legos or Bakugan together. He’s also the one who Carter says has been around the longest; he says they’ve been friends since we lived in our old house. We moved 2 1/2 years ago.
That guy, the nice, invisible one, is the only one who will come out when I’m around. The others hang back or stay in their hidey-holes when I’m present. They don’t like Lolly (our biggest dog) or Brian much, either, but the move back furthest from me. That handily explains why it’s always such a crisis when I leave the house without Carter and why he follows me around the house like a lost puppy.
One of the things that worried us early on about Carter is the fact that he almost never engaged in imaginary play. When Jacob, Abbie, and Spencer were two, 4, 5 years old, they were very busy pretending to be 1,000 different things, but not Carter. When we tried to engage him in imaginary play, he was confused. He didn’t tell stories, didn’t pretend to be a superhero, didn’t fantasize about being an astronaut, ball player, or anything else. When he was 5, I asked him what he wanted to be when he grew up. His response was, “I’ll be a grown-up.”
I know good and well that psychosis is not about imagination, either over or under-active, that the two things (his lack of imagination and his psychosis) aren’t necessarily related, but I have to tell you, I’m in the dark here, and that’s new for me.
I have a head jammed full of knowledge about a ridiculous variety of subjects. This is mostly the result of the fact that reading has been, ever since I became truly literate near the end of second grade, my very favorite thing to do.
Of the many subjects about which I am knowledgeable, mental health is probably the topic about which I know the most. I wrote my very first research paper ever (seventh grade, I think) on autism. I was immediately done for – endlessly fascinated by the varieties of ways that the human brain can be different, dysfunctional, sensitive, or broken. I couldn’t get enough. I read about eating disorders, OCD, depression, bipolar (still called manic depression back when I started on this knowledge quest), addiction, the difference between Axis I and Axis II disorders, and so much more.
What topic did I neglect? Psychosis. Of course, I didn’t neglect it entirely, but I didn’t study it the way I did, for example, OCD or eating disorders. Most of my knowledge about psychosis came from I Never Promised You a Rose Garden and the occasional mention of it in a few books, most of which said something like, “Psychosis is a very serious condition characterized by a distorted perception of reality.”
How confusing and scary it must be to be Carter! I have much to learn, a great deal to grieve, and a huge amount to accept. Just when I feel I am nearing some sort of completion with this process, Carter reveals himself to be more ill than I’d imagined.
Of course, before I have a chance to deal with my own feelings, the first priority is to get Carter out of a psychotic state. Not only must that be terrifying for him, but psychosis actually causes brain damage (again, something about which I need to read), so the less time he spends there, the better. Fortunately, Carter’s psychiatrist is as concerned as we are and working hard with us to get him back to reality. I often feel like all we do is shuffle symptoms; we resolve (or significantly improve) one and another takes center stage, but we won’t give up. Not ever.
Now, I need to tell you this: I don’t want your pity, or even your sympathy, although your prayers and positive thoughts are welcomed. What I really want you to do is take some action on behalf of kids like Carter. It doesn’t have to be big; challenge an ignorant comment about mental illness next time you hear one or tweet the links to good mental health articles when you read them. If you know someone whose family is struggling with a mentally ill loved one, offer them some practical support. If you have more time and energy? Lobby for more, better services for people who live with mental illness.
Remember, if you love someone who is living with mental illness, I would love to publish your story here at No Points for Style. Read this page for details.
*I actually know the answer to this question: extreme anxiety can induce psychosis just as severe depression, mania, and some other things can. I’m just surprised, except that surprised doesn’t begin to cover it.