“What Did the Sickness Make Your Brain Do?”

“What Did the Sickness Make Your Brain Do?”

sad woman with hand in head with redhead hair

by Sarah Sanderson

My daughter was six when I climbed into her bed and tried to explain psychosis. A few months earlier, I’d been hospitalized with postpartum psychosis after the birth of my fourth child. I was growing tired of dodging my eldest’s repeated questions about the whole experience, so this time, when she asked, “Why did you go to the hospital?” I decided to attempt a six-year-old version of the truth.

“Mommy had a sickness in her brain,” I replied as I pulled my daughter’s Disney Princess sheets up to my chin. “Some people get sick in other parts of their body, like when you have to throw up or when Jack broke his arm. Mommy just got sick in her brain.”

“What did the sickness make your brain do?” she persisted.

I wondered how much detail I would have to offer before she would be satisfied. “My brain just… made me think some things that weren’t true,” I tried.

“Like what?”

I had to have seen that coming.

I wanted to inform without scaring her. The part about the whole episode being triggered by memories of childhood sexual abuse was definitely out. My religious fixations probably wouldn’t make sense either. Was pressured speech—the compulsion to speak aloud every thought that comes into your head—too freaky? I settled on paranoia.

“Well… I was scared of the computer.”

Abby burst into giggles. No one had ever reacted to my story that way before. “What did you think it was going to do to you?” she laughed.

The truth was that I had convinced myself that my childhood abuser had somehow downloaded keystroke-capturing software onto our computer and could read everything I had ever typed. As my husband and a friend of ours led me towards the car to get me to the Emergency Room, I shouted, “Don’t turn on the computer until I get back and fix it! Promise me you will not turn on the computer!” It made sense at the time.

Now, I snuggled with my little girl and sighed. “I thought someone was watching me through the computer and I got scared.”

Abby laughed some more. “That’s silly, Mommy!”

“Well, it was silly, you’re right,” I agreed. “But at the hospital they gave me some medicine for my brain and now I’m okay.”

“And that’s why you stay in bed,” she pronounced, familiar with this part of the story.

“Yeah, because of the medicine,” I conceded. A side effect of my medication was that it knocked me out for ten hours at a stretch. I had always been the one to jump out of bed with whichever child woke up first, no matter how early or how little sleep I’d logged the night before. In the past months, however, my husband had shifted into the role of morning parent, because I was usually completely unconscious until after everyone else had eaten breakfast.

“How long will you have to take the medicine?” Abby asked. “If you went to the hospital and they made you better, why do you need medicine now?”

Good question. When I was released after four days on the psych ward, I met with a private psychiatrist for the first time in my life. She patiently explained that most women who experience postpartum psychosis also have, or subsequently receive, a diagnosis of bipolar disorder. At this, I revolted.

“No,” I explained to my new doctor, “I don’t have bipolar disorder. I’m fine. This was a one-time thing. It was triggered by all this sexual abuse stuff! I don’t have a mental illness!” The idea of me having a mental illness was just ridiculous.

The doctor agreed that I could possibly be in the minority, but I would have to take medication for at least eight months until the threat of manic relapse passed. After that, time would tell.

So as I lay in bed with my six-year-old daughter, still in the initial eight-month window after that first psychotic episode, I told my little girl, “I won’t have to take the medicine for very much longer.”

It turned out to be a promise I couldn’t keep. A few months later, in the process of weaning off the medication, I became manic, verging on psychotic, again. When I saw the psychiatrist back in her office afterwards, she confirmed what I now suspected: bipolar disorder had set in after all. Unlike postpartum psychosis, which is a one-time designation, a diagnosis of bipolar never goes away. I could now officially count myself among the chronically mentally ill.

Talking to kids about mental illness is like talking to kids about divorce, or sex, or any other uncomfortable subject: you have to do it over and over again. It comes up, and you answer their questions at their developmental level, and then a few weeks or months or years later, it comes up again, and your answers change.

As I grow more comfortable with my own diagnosis, I am learning to field these questions more adeptly. On some level, though, as I learn to see myself through the eyes of my children, I find that I am still working through my own feelings. Some part of me still can’t believe I’ve landed in this “mental illness” camp. What am I doing here? When will I get out? If I ignore it, will it go away? Each time I confront the issue with my children, each time I verbalize my explanations to them, I am explaining it to myself.

Recently, my third child, who is now six, started calling other people “crazy” in a derogatory way. For weeks, I kept hearing it and letting it slide, but it rankled me. I finally called him on it.
“We don’t use that word that way,” I informed him. “People have real sicknesses in their brain, and just like a sickness anywhere else in the body, they can’t help it. So we don’t use that word to make fun of people. It’s not nice to people with that kind of sickness.”

He stared at me quizzically. My heart thumped, and I recognized the feeling of shame coursing through my veins.

This child was two when I was hospitalized. We never had a snuggly moment of truth afterwards. He can’t remember me ever bouncing out of bed in the mornings. Maybe he doesn’t know I have a mental illness at all. Was I ready to reveal myself to him?

After a moment I decided now was as good a time as any to step out of the mental illness closet with this child.

“Like me,” I leveled with him. I braced myself for the barrage of questions that might follow.

But he didn’t ask. “Okay, Mom,” he shrugged, and ran out of the room.

We’ll talk about it again some other time.

Sarah Sanderson lives with her husband and four children in Oregon. Find more of her work at www.sarahlsanderson.com.

 

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Untethered

Untethered

Carter 2013

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.