Though we didn’t argue, happy for her to go by any variation of the name we gave her years before, it was still sad for Susan and me. We knew contracting “Janni” from “January” didn’t make as much sense, but it was our name for her, our special name for our special little girl. And now it is gone. And even though Susan and I never said a word about it to each other, I could tell we both felt the same thing: that her name change was like cutting the umbilical cord.
IT’S BEEN ABOUT a month since Jani’s been at UCLA and we’re at our Family Meeting, grateful to be part of the “treatment team,” which includes Jani’s doctor, Dr. Kim, a young Asian-American woman, and Georgia, our social worker, who’s nearing retirement age. Dr. Kim is Jani’s primary psychiatrist, but in reality the entire Resnick Neuropsychiatric Hospital at UCLA is working on Jani, including the head psychiatrist, Dr. DeAntonio. Kim’s job, along with consulting with Dr. Howe (making her the first inpatient doctor to do that), is to fight with the insurance company to allow Jani treatment as long as she needs it.
“She is a difficult case,” Georgia starts off. “If it were thirty or forty years ago, she’d be in the back ward of Camarillo State Hospital.”
Susan jumps in. “So there were kids like Jani. What happened to them?”
“Well, obviously I wasn’t able to follow up on them through their lives, but most got better over time with the right medication,” Georgia responds. “But we don’t have that kind of time anymore. Patients used to have six months to a year inpatient, but nowadays, insurance companies don’t pay.”
Two weeks into Jani’s stay here we got a letter from Blue Shield saying they were stopping payment. The only reason Jani is still here at UCLA is because in my desperate attempts to continue her care, I found this state agency, the Department of Managed Care, that overturned Blue Shield’s decision, even going so far as to express disgust that the HMO would consider discharging a child “so obviously unstable.” Under California state law, the decision of the Department of Managed Care’s doctor was final and could not be appealed, so Blue Shield had no choice but to start paying again. But the law doesn’t say how long Blue Shield has to keep paying. They sent us a letter initially authorizing only another three days, at which time they would “review” Jani’s case again. “Review,” we have learned, is a euphemism for “not going to pay anymore.” Blue Shield will keep trying to have her discharged and I will keep fighting them.
“I’m sorry it’s taken so long to get the results of the MRI,” Dr. Kim tells us, looking up from her folder of notes, “but I was waiting for the images to be analyzed by a neurologist before I got back to you.”
Susan and I wait nervously.
“For the most part, everything was normal,” Kim continues. “There was one bright spot in her thalamus, which is what I wanted to get analyzed.”
“What does that mean?” I ask.
“Well, usually in scans of the brain, areas that are ischemic, oxygen deprived,” she gestures, “show up very bright.”
“And that’s not something to be concerned about?” I press.
“It doesn’t impair her function,” Kim replies.
“You don’t think that is the cause of her behavior?” Susan asks.
Kim shakes her head. “We talked about it in rounds. It’s a very tiny part of the thalamus believed to be the primary center through which neurological commands and signals are exchanged between the body and the brain. It’s kind of like a switchboard.”
“And you’re sure this ischemic part of her thalamus wouldn’t have any role at all?” I ask, desperate for answers. This is as far inside Jani’s brain as we have ever gotten.
Dr. Kim shakes her head. “It’s what we call a stressor on the brain, but no, it wouldn’t be the cause. It’s a type of stroke event, although obviously very mild. They often occur in the womb, during birth, or shortly thereafter.”
I feel my blood vessels constrict and a sharp pain in my skull.
“What causes them?” I manage.
Kim shrugs. “We don’t know. It could be a genetic predisposition or a random occurrence.”
“What about shaking?” Susan asks, glancing sideways at me.
“I’m sorry?” Kim is confused, looking from Susan to me.
I lower my eyes. Sadly, after everything that has happened, the truth is I’d almost forgotten about that.
I exhale. “From the moment Jani was born, she never slept. Before we learned that nonstop stimulation helped her sleep, she would only sleep twenty or thirty minutes at a time, little power naps, getting a total of four to five hours a day. So we didn’t sleep either. We’d been getting by because we would take Jani in shifts, five hours on and five hours off. Then Susan had to go back to work because we needed the money. I had her every night, all night, without a break, holding her while she screamed and screamed.” I pause, remembering the fear in Jani’s big blue eyes. “One night, I finally snapped and shook her, yelling, ‘Why won’t you sleep?!’ She immediately started to cry and it shocked me out of it.” I stop, struggling to find the words. “It is the worst thing I have ever done in my life. I wish I could take it back, but I can’t. I did it.”
I turn to Susan, trying to read her expression. I don’t see hatred. I see doubt, her asking herself if all of this can be traced back to me. I don’t know what to say. If I damaged Jani’s brain, how do I make amends for that?
Susan holds my gaze for a moment, then turns back to Kim and Georgia. “I actually don’t think he caused this. Jani was always different. Even in the womb she never slept. But what do you think?”
I look at Kim, who appears to be thinking. She takes a long time before she answers. “Well, there is no way to know for sure, but her crying right after … what he did, is actually a good sign. I would be more concerned if there was a reduced response.”
“There was no change,” Susan says. “I checked her out and we saw the doctor right after. We were always seeing her pediatrician because we were always trying to find out why she wasn’t sleeping.”
“So I might have damaged her thalamus?” I ask softly.
Kim shifts in her chair, clearly uncomfortable. “The thalamus is buried pretty deep in the brain, and it would likely take more than that to cause this ischemic event. Usually, it just happens. The blood vessels in that area never fully developed and when blood starts to flow, they burst.” She pauses, then looks at me. “It doesn’t cause schizophrenia. It’s a stressor on the brain that could bring it on earlier, but it’s not the cause.”
“What about her hand movements?” Susan asks, referring to Jani’s constant rolling of her wrists, at speeds so fast it must be painful, yet Jani shows no reaction. “Could the thalamus be causing that?”
Dr. Kim shakes her head. “It’s not neurological, like a spasm. She doesn’t do it constantly. We think it’s more a form of stimming, like in autism.”
Susan gives an exasperated sigh. “Great, so we’re going back to autism again.”
“We don’t think she has autism,” Dr. Kim answers almost meekly. “We’ve talked about that because many of the doctors here are experts in that area. They don’t feel she fits the profile because the two dominant symptoms Jani shows are her preference for and interaction with her invisible friends and her corresponding aggression toward real people. Children with autism get set off by things the rest of us are aware of but which don’t bother us to the same extent. We don’t know what sets Jani off.”
“So what is it, then?” Susan demands.
“It’s still early,” Kim replies. She looks up and clears her throat, “but I can tell you that at this point we’ve ruled out everything but child-onset schizophrenia.”
The room is suddenly so silent I can hear my own blood surging past my eardrums. I sit back and look at Susan, who looks at me.
It’s not a shock. Susan always suspected Jani had schizophrenia, but I wanted to deny it. I wanted something that could be fixed. Schizophrenia cannot be fixed. There is no cure.
Even after everything that has happened and what people said along the way, I still held out hope. I pushed Dr. Howe to admit it was schizophrenia not because I wanted that to be the real diagnosis but because her reluctance gave me hope. Now that Kim has actually said it, the reality hits home.
My mind shifts to what life is like for schizophrenics, and it terrifies me.
Jani will probably never be able to go to school, let alone college. She’ll never have a boyfriend or get married. I think sadly of how other fathers used to tell me, in reference to how pretty she was, “When she grows up, you’re gonna need a shotgun!” No, I won’t, I realize.
I look down at Bodhi. He will never have a normal big sister. I wanted to believe that one day Jani would snap out of this and finally love him like I always wanted her to. Now I realize she won’t, because she can’t. How she treats him now is how she’ll treat him for the rest of his life. When Susan and I are dead and gone, he’ll be taking care of her, still taking her abuse. That is his future.
I start to cry. I hear a low moan escape from Susan, followed by a sob. She grabs my arm. I put my hand over hers and turn back to Kim, wiping the tears away with my free hand. I push down my pain. I have to focus. I have to plan the rest of Jani’s life now.
“So it is schizophrenia, then?” I say.
Dr. Kim looks so sad, like she wants to cry with Susan. I watch her struggling to be a professional, but she can’t quite do it.
“Um,” she begins, looking so much like a girl in high school, not an MD and PhD from UCLA, “in order to make the diagnosis official, we need more time. Typically, we need to see the symptoms over a six-month period. But given that we have her history from Dr. Howe, I suspect we’ll be able to make a definitive diagnosis before that.”
Susan is still crying and unable to speak. I can barely speak. My anguish wants to be released, but I have to push it down so I can focus. Questions must be asked and answered.
“What is her prognosis?”
Kim looks down again before looking up to meet my eyes.
“Well, the fact that she is so resistant to medication is not good,” she says, “but she’s very intelligent. I would say … fifty-fifty. She has a fifty percent chance of getting better and a fifty percent chance of getting worse.” She pauses. “I wish I could give you better odds.”
It’s hard to breathe. “I appreciate you being honest with us.”
“Always,” Kim answers, looking down again.
Georgia leans across the table, putting her hand out, taking mine and Susan’s in hers.
“The important thing to remember now is not to give up.”
“That’s right,” Kim adds. “We’re not giving up. Jani has responded well when she had to receive a PRN of Thorazine. Our plan right now, assuming you approve, of course, is to start Thorazine as a standard. It’s not something we generally do, but given the severity of Jani’s case we feel it is warranted.”
“This is not the end of the world,” Georgia says. “It is our job to treat Jani. Your job is to make sure you both will be okay.”
I shake my head. “She’s already been through so many medications, and none of them work perfectly.”
Kim and Georgia exchange looks. “No,” Kim answers, “but new medications are coming on the market all the time.”
“That is why you have to be strong,” Georgia adds. “Don’t give up.”
“We won’t,” Susan speaks up. “We can’t. She’s our daughter and we love her.”
“And honestly,” Dr. Kim replies, “that is why I actually do have hope for her. She has the two of you.”
“We’re not giving up,” I answer. I clear my throat for the question I really need to know. “I’m no doctor, but most schizophrenics I’ve seen are scared of their hallucinations.”
Kim nods slowly. “The disease presents differently in everyone, but generally that is true.”
“Jani’s not afraid of her hallucinations. They’re her friends, even the ones who bite her and scratch her, like 400.”
Kim nods again. “That’s a good thing, though. I’m sure you wouldn’t want her living in terror.”
“No. No, I wouldn’t.” I struggle to say what I have to say. “But they are very appealing to her, more than anything in this world. What if … one day she goes into her world and just doesn’t come back?”
Kim appears taken back.
“Is there a possibility,” I continue, “that this is catatonic schizophrenia?”
Kim looks to Georgia, seemingly for reassurance.
“I mean, that is a version of schizophrenia, right? What if she has that?”
Kim regains her professional demeanor. “Well, first of all, there is not complete agreement that catatonic schizophrenia exists. Patients definitely go into their own fantasy world, but I have never seen anybody fail to come back. If that is what you are worried about, I wouldn’t be concerned.”
But that is exactly what I am worried about. We are through the looking glass now. Things that I thought could never happen have happened. Kim can tell me until she is blue in the face that Jani will never just slip away into Calilini, but what if she does?
CHAPTER THIRTY-ONE
Late March 2009
What food did you bring?” Jani asks me as I enter the unit.
“I brought mac ’n’ cheese from Burger King …” I stop, seeing Jani’s middle finger, splinted, wrapped in bandages.
“What happened to your finger?”
“Adam slammed my finger in the door. Look.” She removes the bandages. Her finger is mottled black and blue.
Adam is another boy on the unit. He’s a year younger than Jani, but he’s the first child on the unit who’s worse than she is.
I immediately get a nurse.
“We had it checked by a doctor and x-rayed,” she tells me. “It’s not broken.”
“What happened?”
“She called him a dog; he hit her and she hit him back.”
Oh no. Jani calls all people “dogs,” but this kid is African-American and he may have had a bad experience with the word. Is this going to be Jani’s future, I wonder, unintentionally starting fights because she doesn’t understand social cues?
I go back to her room, where she’s eating the Burger King food I brought.
I left the door open and a small boy appears at the door.
“That’s Adam,” Jani tells me.
Adam, a smile on his face, the same twisted smile I’ve seen on Jani’s face, takes a step into her room, a violation of the rules. He is now trying to provoke her.
Jani moves toward him, lifting her arm in preparation to hit. I grab her by her shirt and hold her back just as a male nurse, Adam’s assigned “one-to-one,” reaches the door and pulls Adam back.
“Sorry,” the nurse says. “He got away from me for a minute.” He closes the door.
Jani immediately pushes it open again.
“Jani, where are you going?” I ask nervously, even though I can guess. “Come back and finish your food.”
“I have to hit him,” she tells me in the same voice she used going after Honey.
I run out into the hall. Jani is already at the entrance to Adam’s room. She disappears inside. I race in and see her with her arm raised, moving in for the strike.
Adam is struggling to get free of the nurse holding him. I grab on to Jani and start moving backward, pulling her along with me. The nurse and I look like boxing referees trying to keep two fighters apart.
“I need to hit him,” Jani repeats.
“No, you don’t.”
“He hurt me.”
“That’s because you called him a dog. He didn’t like that. You have to call people by their names.”
Jani is struggling against me. “Let me hit him!”
“I need something to distract her,” I call to another nurse in the day room, the unit’s communal area, and look around. At the end of the corridor is another room. This one is filled with musical ins
truments, including a drum set. Maybe I can get her banging on the drums as a way to vent her aggression.
“Could we get the music room opened?”
The nurse unlocks the music room.
I take the drumsticks and pound on the snare and the floor tom.
“Here.” I hand Jani the drumsticks, and she hits the floor tom without much enthusiasm.
I pick up a second set of sticks. “No, like this.” I pound the hell out of the floor tom, the snare drum, and the crash cymbals. “Really hit ’em,” I yell over my noise. “This is something you can hit. It’s okay because it’s not alive. Really get into it! Take your aggression out! Beat the heck out of them! It’s okay.”
Jani hits harder.
Adam appears at the door, followed by his nurse.
“Sorry,” the nurse says apologetically, trying to pull Adam away. “He heard the drums.”
“I want to play, too!” Adam calls into the room.
“You can’t right now. Jani is in there,” the nurse answers, trying to steer Adam away.
“It’s okay,” I call to the nurse. “He can come in. There are two sets of sticks.”
The nurse looks at me like I’m crazy.
“Are you sure?”
If Jani is ever going to be able to survive in the outside world, she has to learn how to deal with people. If she can socialize with Adam, despite wanting to hit him, then that would be a huge break-through.
“Yeah,” I reply. “There’s enough drums for everybody.” I flip my sticks, holding them out to Adam.
“But first let’s make sure everybody understands the rules. The only thing you can hit with the sticks are the drums. There will be no hitting of each other. Understood?”
Adam nods. I hand him the sticks and position him on the opposite side of the kit from Jani.
“Adam, you hit this drum, which is called the floor tom, and Jani, you hit this drum, which is called the snare drum.”
Adam bangs on the floor tom.
“I don’t want to play anymore,” Jani says, tossing her sticks on the floor.
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