Jani is 9 years old now. She is in the fourth grade, although she is alone except for a teacher and an aide.
Those words still don’t seem entirely real to me. I have a hard time wrapping my mind around the fact that Jani will turn 10 this year.
Part of this is because during the dark days of the spring of 2009, when Jani was six, around the time that she was diagnosed with child onset schizophrenia, I never thought we would get here. Jani was in UCLA for what ended up being four months straight. The diagnosis was not the worst part. Identifying the enemy didn’t mean as much as I had hoped because what good was knowing your enemy if none of the weapons in your arsenal did anything against it? Jani’s schizophrenia manifested as an entire army of Calalini, and every week was spent raising medications and lowering medications, abandoning medications and starting new ones. Every day was the same for me: always looking into Jani’s eyes for any sign that we were slowing the advance of that army. All of us were desperate. Jani’s violence and hallucinations were not responding to any of the medications, any of the doses that should have worked. None of the “atypicals” had any effect. Calalini seemed to be able to cut them down like a machine gun. The doctors and social worker would make vague references to Jani being “a difficult case” but never elaborated on what that meant. Strangely, we generally avoided asking about her prognosis.
“Prognosis” comes from Greek, and is the root of the word “prognosticate.” Literally, it means “future knowledge,” but in modern English it means a best guess at a future outcome. In medicine, it is means “likelihood of full recovery.” “Excellent” means that the patient will likely make a full recovery, returning to his/her prior state before the onset of illness. In numerical terms, it means a better than 90% chance of recovery.
“Recovery.” Even its name implies to “recover” what was lost, what the disease took.
A prognosis of “good” means a better than 70% chance.
“Fair” means 50%. A flip of a coin. Fair can mean more than one thing. It can mean there is a 50/50 chance of recovery. It can also mean that recovery will be less than 100%, should it happen at all.
“Poor” means less than 50% chance. Poor means that indications are that recovery will be less than satisfactory, if at all. Poor means that it is unlikely that the patient will ever return to a state resembling that prior to the onset of illness.
As weeks became months, the only medication that seemed to have any effect against Calalini was Thorazine, generally only used today as a PRN, or “pro re nata” (Latin for “As the situation calls”). When psychiatrists see signs that a medication is working, the standard response is to increase the dose.
The Thorazine was increased week by week. I remember I kept asking “What do we do if the Thorazine doesn’t work?” We were told to “just take one day at a time.” Don’t think about the possibility of failure. But I had no choice because nothing was working. I had to consider the possibility that nothing we did would stop the advance of Calalini.
Thorazine is a “nuclear option,” along with drugs like Haldol and Clozapine. I grew up when the Soviet Union still existed, but unlike those who lived through the 1950s and 60s, I never feared nuclear Armageddon.
Because of “MAD:” Mutually assured destruction. MAD was why I didn’t fret growing up as a kid. MAD meant that there would be no winners in an uncontained nuclear exchange. MAD meant that neither the US nor the Soviets would fire first because they knew they would be signing their own death warrants.
MAD was logical.
Schizophrenia and other mental illnesses do not follow MAD. There was no way for me to convince the denizens of Calalini that a total victory by them would mean their own destruction. A high enough dose of Thorazine will destroy them, but it would also assure Jani’s destruction.
We went as high as we could go. We reached 300mg. It brought her back. But at a terrible cost. She went into dystonia, a reaction to high doses of neuroleptics where the muscles spasm. In psychiatry parlance, they call it “EPS” or “extra-pyramidal symptoms.” I visited Jani on the night it happened. She was lying in the arms of a nurse, screaming that she couldn’t swallow. And she was sane, present, whatever you want to call it. And she was terrified.
Because fear is logical.
Watching her suffer like that was worse than watching Calalini take her. At least she wasn’t scared of that.
So we blinked, like Kennedy and Krushchev during the Cuban Missile Crisis. We decided we would not allow her to be destroyed by our hand, just to win the war. I surrendered to what I thought in April 2009 was the inevitable. It was just a matter of time. Susan and refused to send her to out of state residential facilities, the only offer from the Department of Mental Health, because to me that felt like abandoning the battlefield. I decided that she would stay with us. I felt it would be like San Jacinto or the Alamo: I would hold the line until I was overrun. I would rather die on the battlefield than retreat.
This was not motivated by any sense of nobility. She was my daughter. If she was going to go down, I was going to go down with her. I wanted to send Susan and Bodhi away and stay behind to hold the line for as long as a I could.
An interesting thing can happen if you keep fighting, even when you are convinced you are going to lose. The environment around you can change.
What ultimately saved Jani was something I never would have considered. It was Susan’s idea. Trade in our two bedroom apartment on two one bedrooms: one for Jani and one for Bodhi.
This changed the nature of the war by allowing us to “evacuate” Bodhi to safety. With Bodhi no longer under constant threat, we could continue the fight. When Jani left UCLA in June of 2009, when she came home, she came home to her own home, away from Bodhi. If she became violent, there was no risk to him.
The two apartments bought us time to continue the fight. And those who financially supported us while we did that, I believe, saved Jani’s life.
But there was still no future. Janis prognosis was “fair.” She had a fifty percent change of getting better and a fifty percent change of getting worse. My focus was just on getting everybody to the end of each day intact. I never allowed myself to consider the future. You can’t when you don’t know if your child will make it out alive.
Except she did.
Without the stress of living with Bodhi, the violence began to abate. The more stress we removed, the better it got. Jani started Clozaril, which also helped turn the tide. We started going to the animal shelter to help out, as well as equine therapy. We finally got a school program that worked for Jani, keeping her stress level down.
Slowly, we fought Calalini back to a stalemate. Our resources were running low every month but so were Calalini’s. Without the stress, they lacked the firepower to take her. We achieved an uneasy peace with 400 and Calalini.
Maybe it would have helped if I’d had some closure to the war for Jani’s mind. There was no official signing of an armistice. There were no agreed to terms of a truce. I never woke up one morning and realized the war was over.
Because it never really is. Since then it has been like standing on the border between North Korea and South Korea. I spent every moment on top of a wall, watching the demilitarized zone, watching for any sign that Calalini was coming back across the border.
Other than a few potshots, they haven’t so far.
I wonder if the reason returning veterans have such a hard time adapting to civilian life again is because suddenly you have a future and you don’t know what to do with it. In combat, you can’t think about the future. You can’t think about the future when you or someone you love might die. And then suddenly life is moving again and you don’t know how to let go. You’ve gotten used to living in fear, always waiting for the other shoe to drop.
It’s hard to take your finger off the trigger when that trigger is what kept you going. Pull the trigger and shoot. But Calalini is gone now. This is just your daughter. You have to let go of the trigger now. You have to lower your gun. You have to flip the safety back on.
So part of why it is hard for me to wrap my mind around the fact that Jani is nine and in the fourth grade is I honestly wasn’t sure we would ever get here. I don’t know if parents of neurotypical kids take their growing up for granted. I sure as hell don’t.
I wasn’t sure we would ever be here so I never planned for peace. I never planned for our lives to go on. I never planned on Jani growing up.
It’s sounds horrible now but it’s true.
The other reason I struggle with where Jani is now is because “recovery” was not total. I don’t know if I believe it ever can be with schizophrenia or any other major mental illness. People have told me that it is possible but have never been able to prove it.
Jani came back, which was the only thing I wanted. But she didn’t come back the same way she went in. She did not completely return to where she was at two years old, before the onset of any of her behaviors.
The disease changed her.
But I’ve never forgotten my brilliant, funny little girl who I knew before all this. She is still brilliant and funny, but the shine is gone. It was gone nearly two years before she went into her first hospitalization. I just didn’t want to admit it. I kept thinking that if I just tried hard enough, I could bring that Jani back.
Of course, I failed. It was an impossible mission. The schizophrenia retreated but it scorched the earth behind it. Rebuilding will probably take the rest of Jani’s life.
There is a sense of loss when your child has a severe mental illness. You do lose what you had. If you stay on the battlefield, you can win a lot of your child back. But not all of them.
Many of Jani’s memories of the time before are gone. Whether that is the result of the disease, the medications, or a combination of the two, I don’t know. It doesn’t really matter. I was losing her. She was slipping away and I was not going to let her go. I was selfish. I needed her as much as she needed me, for reasons that to this day I still can’t quite explain.
I just couldn’t let go. Maybe one day I will understand why.
The upshot is I did what I felt I had to do to bring her back.
But now, sometimes, when I first see her in the morning I find it hard to believe she is who I know she is. She’s only a little over a foot shorter than me now. She weighs 76 pounds. She’s lengthened out. Her face is getting more angular as the baby fat disappears. Her hair is a little bit longer. She takes her own baths. She dresses herself. She can make some of her own meals.
About the only thing she doesn’t do is open her own medication bottles.
A few weeks ago we were sent to a pediatric endocrinologist for a check-up, because lithium can cause early onset of puberty. It isn’t, but the natural signs are already there. Susan tells me Jani has little buds on her chest, although for the life of me I can’t see it. Susan bought her her first training bras. Based on lab results, her period is probably about two years away.
Her psychiatrist, a few weeks ago, said “We still have awhile but as she gets into her teen years we need to talk about birth control.”
Where the fuck have I been?
I have been with Jani all her life but now I feel like I missed out on something. Now it feels like one day she was a child and now she is almost a teenager.
She grew up right under my nose and I never saw it.
Oh, right. I’ve been standing on the wall, watching for the enemy.
It’s time to lower my weapon. It’s time to flip the safety back on. It’s time to pull the cartridge. It’s time to come down off the wall.
But I can’t quite do it. It’s all I know how to do now. It’s all I am. I am the line between Jani’s illness and her life. I don’t know how to be anything else anymore. I’ve been fighting for four years straight. I don’t remember who I was before all of this.
I don’t know what to do with myself anymore.
And it’s not like I am done. Jani has come further than I ever thought she would, but it’s not like her schizophrenia will ever go away. Calalini will never demilitarize entirely.
Jani will never entirely be free.
I notice this most profoundly when I see other girls her age. Jani looks like them physically but that is the end of the similarities. There is a young girl in our complex who we recently ran into. I didn’t recognize her but Susan did. She went to kindergarten with Jani at Oak Hills Elementary, before Jani became “acute.” Before she was moved, first to the “Severely Emotionally Disturbed” (SED) program at another school, and then to her current system of working one on one with a teacher and an aide for two hours in the late afternoon after all the other kids have gone home, or to dance class or soccer practice or whatever they do.
This girl is very nice and when she is out riding her bike and we are outside too, Susan will try to get Jani to talk to her. Or if it is just me and Jani then I am the one trying to get Jani to talk. And this girl talks to Jani. And Jani talks back. This girl has cats. Jani talks to her about her cats, none of whom actually exist, at least not in this universe. I don’t bother to tell this girl that Jani’s cats are hallucinations. If the other girl believes they are real, that is a connection. And I desperately want Jani to have a connection with a girlfriend.
But when it comes to other topics of conversation, that is where the struggles begin. Take TV shows, for example. Jani doesn’t like any of the “tween” shows on Disney or Nickelodeon. She watches toddler shows alongside Bodhi. Even when Bodhi is not around, that is still what she wants to watch. She knows “Bob the Builder” and “Jay Jay the Jet Plane,” shows that haven’t been on in years. She finds poop jokes and bathroom humor funny (as do I-In my opinion, “Airplane” is the greatest comedy film ever made).
And Jani is always moving. She can’t stay still long enough to have a conversation. She will say something, dance a few feet away, rubbing her hands together furiously, and then come back and say something totally unrelated to what the girl is saying. I talk to the girl, responding to what she saying, not because I give a damn but because I am trying to model “polite conversation.” I also do this to keep the girl from riding off on her bike again and leaving Jani. But I lose either way. Because the girl ends up talking to me more than Jani. Out of the corner of my eye, I watch Jani dancing in and out of the conversation, clearly happy, rubbing her hands, and repeat the same thing she already said or try to return to conversation to the girl’s cats or her “cats.” She has no ability to move on. And the girl, who is nice, answers her, either repeating what Jani just said or giving a one sentence answer because they were talking about their cats five minutes ago.
And I watch Jani. She continues to come and go, but each time now she gets a little further away and doesn’t come as close when she comes back. I know what is happening and it breaks my heart. Jani is giving up on the conversation. Eventually, she drifts away and I hear her talking to one of her hallucination friends, like 24 Hours.
This girl is only nine, but nine is worldly now. I don’t mean it in the sense that she knows more about the world than Jani. What I mean is that she has lived in this world her whole life. She has grown up in a social system of cliques and cues and she has learned. Jani is new to this world.
Our world is hard enough to navigate without the added stress of late elementary and junior high social systems.
This girl has already learned to talk to Jani the way adults talk to her. She is a nice girl and won’t make fun of Jani. She understands Jani is “different.” But she doesn’t have the social skills to engage Jani and Jani doesn’t have the social skills to engage her. Watching them is like watching two people who speak different languages trying to communicate.
We know there are others like Jani out there. We have met them. So has she. And when she does it is the only time that she is truly happy. Unfortunately, they are spread across the country.
A few weeks ago, Jani said that she wanted to jump down from the building we were in. We were on the fifth floor. I reacted as I always do, trying to distract her. “No, you don’t want to do that. Come over here and play with me and Bodhi.”
She turned to me. “I do. I want to die.”
I looked for any sign that she was psychotic. She wasn’t. She was totally present.
“I….I thought you’re always telling me you want to live to one hundred,” I stammer, trying to hide my fear.
She looks back out the window. “I don’t. I want to die at nine.”
Jani has never been this articulate about wanting to die.
“Why?” I asked, almost crying.
“Because I have schizophrenia.”
“So what? That’s not the end of the world. A lot of people have chronic illnesses. It’s just diabetes.” I was babbling.
I told her doctor and she repeated, alone, the same thing to her doctor. We were concerned. We don’t want to do an anti-depressant because anti-depressants have only wound her up in the past, making her more of a danger to herself.
It was decided we would just watch.
She has said nothing about it since.
A week later, we were driving in the car when INXS’s “Devil Inside” came on the radio. Jani likes music so I was telling her about INXS, how they were from Australia like me, how I used to pronounce them “INKS” as a kid, how Michael Hutchence had a great voice but he’s dead now. He committed suicide by hanging himself.
Jani turns to me. “What did he have?”
I stared at her, not sure at first what she meant. It took me several seconds to realize she was asking “What did he have?” as in “What diagnosis did he have?”
I felt terrible. I could have kicked myself. I will admit that it is my fault Jani connects suicide to mental illness. I’ve driven home that connection out of fear, always telling her that the people who did it were not on meds. I tell her that is why it is important that she always take her meds. I am terrified that once she is an adult she will stop taking her meds and her psychosis will take over her life again and possibly end it. It’s a warning drill.
Except that maybe it wasn’t such a great idea.
“He didn’t have schizophrenia, Jani,” is all I can say.
I am torn. I want her to understand the importance of having to take her meds for the rest of her life but I also don’t want her associating herself with every suicide, every murder/suicide (Columbine and Virginia Tech) or every shooting by a person who is obviously mentally ill (Jared Loughner in Tucson a year ago and TJ Lane last week in Ohio). I want her to understand that these things can happen when someone is severely mentally ill and not medicated, but I don’t want her asking me (as she did when I taught her about Lincoln’s assassination by John Wilkes Booth), “What did he have?”
Yeah, I know some people will think I am an awful father for telling her these things. “How could you do that?”
Because I am still sitting up here on the wall, starting Calalini in the face across the great divide. I am still terrified of it and I want to prepare her for anything.
“Just take your meds and you’ll be fine,” I tell her.
But I realize now Jani doesn’t need me up on the wall anymore. It’s not Calalini I need to fear anymore. It’s not suicide or her shooting up a school because she is not on her meds that I need to fear.
It is the social isolation of her disease.
And I’m not helping that.
It’s not her world that I need to fear anymore.
I need to get down off the wall and help her deal with this world.
Jani conquered Calalini.
Now she has learn to live in our world.
Because being human is just as hard as being schizophrenic.