January First: A Child's Descent Into Madness and Her Father's Struggle to Save Her
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“Janni, what were you doing?” I ask. Janni is trying to open the window. Dave struggles to his feet and holds it closed.
“I want to get away.”
“Janni, you could have fallen on your head and died.” My voice is so weak, like I am fading.
“I have to get away.”
“From what?”
Janni suddenly turns from the window. “I’m hungry. Can we go to Red Lobster?”
I know I should press her to find out what the hell she was doing, but I don’t. I’m afraid. I am afraid because she was trying to “get away.” And whatever she was trying to get away from in here, alone in her room, is worse than dropping from a second-floor window.
CHAPTER TWENTY-SIX
December 29, 2008
I am sitting on the couch in Dr. Howe’s office as Susan is describing how Janni tried to jump out the window.
I am thinking, but not about that. I can’t bring myself to think about that. If I do, I know I will fall apart. I am supposed to be Janni’s protector. I would give my life for her. Yet, when it happened, I was too numb to respond. But that numbness is the only thing that allows me to function.
Instead, I find myself thinking about when I was a kid. My dad had his private pilot’s license, and he used to take me flying with him. He always made me feel like I was a real copilot by involving me in the process, and one of the most important jobs of the copilot is to read the various checklists to the PIC (pilot in command). It’s a way of making sure the pilot has done everything he or she is supposed to do.
I remember reading the checklist to him. Everything I read, he would repeat, double-checking that the procedure had been done.
Fuel set to center?
Fuel set to center.
Mixture rich?
Mixture rich.
Engine cowls open?
Engine cowls open.
Master switch on?
Master switch on.
I think about my questioning of Janni, trying to get her to see the connection between her actions and the consequences.
What did you do?
I hit Bodhi.
No. What did you do?
I screamed.
No.
It’s like she’s guessing at the answer.…
Oh, my God.
“She’s guessing,” I suddenly say out loud.
“What?” Dr. Howe and Susan say simultaneously.
I stare at the floor. “Every time I put her in for a time-out, I tell her she can’t come out until she takes responsibility and admits what she did that got her there in the first place, but she guesses at the answer and never gets it right. She always starts with ‘I hit Bodhi,’ then she’ll say, ‘I screamed,’ and she keeps running down a checklist of everything she might have done until she gets the right answer.”
I rub my eyes. “I always assumed she was playing a game, but now I realize she really doesn’t know.” I look Dr. Howe straight in the eye. “She’s not playing. She really doesn’t remember.”
Dr. Howe appears lost in thought for a moment. She glances up at us, and I get the sense she is struggling with whether to tell us something.
“She doesn’t remember,” she finally says, “because she’s disassociating.”
Disassociating. Doctor-speak. Part of their unique “language.” I remember first learning this term in college psychology. Like most psychiatric terms, it doesn’t sound particularly threatening. That’s because Dr. Howe left off the rest of the sentence: from reality.
A person “disassociating” is a person who slides back and forth between two realities: ours and theirs.
“What does that mean?” Susan asks. I can hear the fear in her voice.
Dr. Howe looks over at Janni. “I think I might have been wrong about the mood disorder,” she finally says. “I used to believe her psychosis was a product of her mood.” She looks back at us. “Now I am starting to think it is the other way around. Her mood is the product of her psychosis.”
“I don’t get it,” Susan says, darting her eyes between Dr. Howe and me.
“It’s too soon to tell,” Dr. Howe answers. “I really wish we could get her into UCLA, where they could observe her over a long period of time.” Observe her for what exactly? She doesn’t explain.
“What are you saying?” Susan knows something bad has been realized, just not what. I look over at Janni, at my little girl.
“Could be any number of things,” Dr. Howe answers. “That’s why she needs to be in UCLA.”
Susan looks to me. She knows I know.
I sigh. “The first is bipolar with psychotic features. The second is schizophrenia.”
Susan stares at me for a moment. I look down, unable to meet her eyes.
“So she does have schizophrenia,” Susan says quietly, as if it is fact.
Dr. Howe, writing a prescription, shakes her head. “I didn’t say that.”
“Then what else could it be?”
Dr. Howe turns to us. “Remember what I told you when you first came in a year ago: The diagnosis is less important than the symptoms.”
She tears a prescription off her pad and hands it to me. “I would like to try a low dose of Haldol.”
Haldol. I know about Haldol. I’ve read about Haldol. In the movies where you see patients sitting in the corner, drooling, staring into space? That’s Haldol.
“Haldol is used to treat schizophrenia,” I say.
“It’s a general treatment for psychosis,” Dr. Howe answers, refusing to look at me.
“I’ve read about it. It’s used only in the most extreme cases of schizophrenia where the patient has failed to respond to all other medications.”
Susan turns to Dr. Howe, alarmed. “You mentioned Geodon before,” she says, almost babbling with fear. “We haven’t tried that yet.”
Dr. Howe’s face is impassive. “I don’t think it would work. Risperdal had no effect on Janni, and Geodon is chemically very similar to Risperdal.”
“It is schizophrenia, isn’t it?” Susan says, her eyes tearing up. “I knew it.”
“We can’t say that yet,” Dr. Howe replies.
But the dam has cracked. Dr. Howe can stick her finger in the crack all she wants, but there is no stopping the flood.
“Why not?” I ask. “What else is left?” Why can’t Dr. Howe just admit it? Why maintain this sense of false hope? Schizophrenia has always been the potential eight-hundred-pound gorilla in the room, the worst-case scenario, but if she has it, just tell us. At least then we’ll know. I look over at Janni, playing with the dollhouse. Let us enjoy what we have left of her.
“You can’t just diagnose someone with schizophrenia,” Dr. Howe responds.
“Why not?” I ask again.
“Because you just can’t!” Dr. Howe snaps. I am taken aback, having never known her to be this flustered. “It takes a long period of observation to make that diagnosis, longer than a year.”
She regains her composure, resuming writing on the prescription pad. “You might want to call your pharmacy and make sure they carry Haldol. It’s not a commonly used antipsychotic anymore.”
“Have you ever prescribed it before?” Susan asks.
Dr. Howe stops writing on her pad.
“Not to a child this young,” she admits.
“Why?” I ask, even though I already can guess the answer.
Dr. Howe turns to me. “I’ve never had to.”
Dr. Howe starts walking us out. Susan is in front, pushing Bodhi’s stroller. Janni is next, followed by me, with Dr. Howe bringing up the rear.
“Give me a call in three days and let me know how the Haldol is doing,” she says.
I nod.
She draws closer to me and whispers. “And keep seeing what you can do to get her into UCLA.”
I stare at her and nod, still trying to process this.
CHAPTER TWENTY-SEVEN
January 12, 2009
I look across at Janni. It’s her first day back at s
chool. She is very quiet this morning. No mention of 400 or any of the others from Calalini.
I turn into the lot. “We’re only five minutes late. If we hurry, you can get to class before Mrs. Parris does the absent list.” I pull up in front of the school and pop my seat belt off.
“I can go by myself,” Janni suddenly says, getting out of the car.
“Are you sure?” I ask, getting out and retrieving her roller bag from the backseat. I feel like I should go in with her, if for no other reason than to remind Mrs. Parris that I’m still here watching how she treats Janni.
“I’ll be fine.” Janni takes her backpack. She doesn’t look upset; in fact, she just looks like any other child her age going to school. It occurs to me that I’ve never actually seen this.
“Wait a minute,” I call to her.
She stops. I run up to her and give her a kiss on the top of the head. “I love you.”
She kisses me back. “Love you.” She turns and walks away, pulling her backpack behind her.
I get back in the car and call Susan.
“How was Janni when you dropped her off?” she asks.
“Fine. She didn’t even complain about going to school this morning.”
“Maybe the Haldol is working,” she says with cautious optimism.
“It’s too early to tell,” I reply, unwilling to let myself feel any hope. “But she’s never gone this long without talking about her imaginary friends.”
I shift uncomfortably in my seat. “If the Haldol has taken away her imaginary friends …”
“Then that means they were never imaginary,” Susan finishes my sentence.
When Janni told us at Loma Linda that the rats were afraid of Bodhi, she was telling the truth. They’re real to her because they’re hallucinations.
I AM WALKING into Walmart for cleaning supplies. My cell phone rings. I check the caller ID and it’s the school district’s main line.
I sigh. I just dropped her off twenty minutes ago.
“Hello, Mr. Schofield? It’s Nancey from Oak Hills School. Janni was just brought into the nurse’s office.”
Janni must have gotten bored and requested to go to the nurse’s office. I’m going to have to let Nancey in on the secret.
“I’m not worried. That’s what we told her to do if she was having a hard time in class. She’ll sit there a few minutes, get bored, and go back to class.”
“Well, I’m little worried, Mr. Schofield. She seems pretty sick. She’s also drooling.”
“That’s the medication,” I reply, growing annoyed. I know what they want. They want me to come and take her off their hands. “The medication she’s on increases saliva production,” I add. “No big deal.”
“She says she can’t walk.”
I’m getting angry. I don’t believe Janni can’t walk. She’s a smart girl. She knows what to say to get into the nurse’s office, just like she knew what to do to get back into Alhambra.
“The medication makes her tired. She’ll be fine. Call me if she gets worse.”
I hang up. If I stay on the phone, we will just go in circles, with Nancey continually trying to convince me to come get Janni. I need this time to get cleaning supplies. I can’t shop with Janni.
I’m inside Walmart, trying to remember everything I need to get, when my cell phone rings again. This time it’s Susan.
“Doe?”
“The school called me!” she says, panicked, and I can hear the windblast coming from her driving the car.
“Yeah, I know,” I reply. “They called me, too.”
“She’s having a stroke!”
“What?”
“They said she is drooling and can’t walk!”
I roll my eyes, surprised Susan would buy into this. “That’s not a stroke. That’s what they told me, too. They just want us to come take her off their hands.”
“They called the paramedics!” Susan screams into the phone.
My annoyance at the school vanishes, replaced by fear.
“They’re overreacting,” I say, trying to convince myself as much as Susan. “This is no big deal.”
“She can’t move her left side! They’ve called the paramedics to take her to the hospital!”
I shake my head. I can’t believe it. I won’t believe it.
“I need you to meet me at the school and take Bodhi! I’m going to the hospital with her. Where are you?”
“Walmart. I’ll be there in five minutes.”
The windblast is gone. Susan hung up.
This is an overreaction. Janni is fine. She has to be fine, I tell myself, leaving the half-full shopping cart behind in the aisle and running for the exit.
AS I COME down the hill toward the school, I see an ambulance in the driveway. Paramedics are coming out of the school, wheeling Janni on the gurney, one holding up an IV bag.
I floor the accelerator and take the curve fast enough that the right wheels leave the pavement. What keeps running through my mind is the fact that I didn’t go to her immediately. I didn’t take this seriously. I thought this was nothing.
I abandon the car in the middle of the parking lot, the engine still on, as I run toward Janni. She is being loaded into the back of the ambulance. I am close enough now to see that there is an oxygen mask on her face. Susan steps in behind her, holding Bodhi in her arms.
The principal moves to intercept me. “She’s going to be fine, Mr. Schofield,” he says, holding up his hands to reassure me.
I blow past him. Susan sees me coming. I can see anger in her eyes that I didn’t react. One paramedic, the driver, gets out and is about to close the doors when I get there.
“What is happening?!” I ask, panicked.
Susan gets up and hands me Bodhi. “She wasn’t able to breathe,” she says, looking at me with pure hatred. “She would have died had they not called paramedics.”
The paramedic holds up his hands. “She’ll be fine. She’s developed dystonia. Your wife said she’s on Haldol, and that can cause dystonia. We got her on a Benadryl drip. She’ll be fine now, but we’re still taking her to Henry Mayo.”
JANNI IS ALREADY looking better by the time the ER doctor comes over to us.
“What happened?” I ask.
“She developed what we call a dystonic reaction.” He’s looking in Janni’s eyes. “It’s a common reaction to antipsychotics, especially Haldol.” He lifts Janni’s arms and checks their rigidity.
“Can it be fatal?” I ask. If he says yes, I deserve to die. I should have been there.
“No, not at all,” he replies. “It’s scary to watch, but it’s not fatal. It’s caused by spasms in the neck and facial area. The tongue protrudes from the mouth, which is what causes the drooling. It’s easily treated with Benadryl, which relaxes the muscles. We’ll keep her on the Benadryl drip for a couple of hours and observe her, but she should be fine.” He looks into her pupils. “She is already looking better from when she first came in.” He turns back to us. “Your wife said she was on Haldol?”
“Yes,” I answer dumbly.
“What’s her diagnosis?” he asks.
“Psychosis not otherwise specified.”
He nods. “And her regular psychiatrist didn’t prescribe Cogentin?”
“No.”
He frowns. “I’m surprised, because Cogentin or at least regular Benadryl is pretty standard practice for anyone given Haldol because of its tendency to do exactly this.”
“SHE WENT INTO dystonia!” I yell at Dr. Howe over the phone. I feel guilty as hell, but the fact that Howe didn’t prescribe Cogentin gives me someone else to get angry at.
“I’m surprised,” Dr. Howe replies calmly.
“The ER doc said she needs something called Cogentin! Why didn’t you prescribe that? Did you not know about that?” I again don’t trust Dr. Howe. This is over her head. She can’t handle Janni. We have stuck it out with her for more than a year even though she clearly never had a clue. I should have found a new psychiatrist long ago
. I didn’t because I didn’t want to have to try and explain all over again what we were going through. I was too tired.
“I know about Cogentin,” Howe answers. “Normally it’s given along with Haldol to prevent dystonic symptoms.”
“Then why didn’t you prescribe it?” I shout into my phone.
“Because I’ve given her powerful medications before in doses she shouldn’t be able to handle and they haven’t worked,” she answers softly.
The anger in me dies like it was shot.
“Janni has the highest resistence to medication of anyone I have ever treated,” Dr. Howe continues. “With any other patient I would have been worried about dystonia, but I didn’t think it would be a problem for Janni. I was wrong.”
I close my eyes, thinking back to the “>99.9%” on Janni’s IQ scores. I always knew Janni was unique. This is not how I wanted her to be unique.
CHAPTER TWENTY-EIGHT
Friday, January 16, 2009
My cell phone rings. I look down at the Caller ID, expecting it to be Susan, updating me on Bodhi. She’s at the pediatrician with Bodhi for his one-year vaccinations.
But it is the school district main line again.
This is the first call from the school since Janni went into dystonia earlier in the week. The Haldol was lowered on Tuesday. Mrs. Parris had told us that Monday, prior to going into dystonia, Janni was the best she’d ever seen her. Tuesday, Janni did pretty well at school. Wednesday, she did okay. Thursday was like she was never on the Haldol at all.
“Mr. Schofield, this is Mrs. Fitzgerald. We need you to come get Janni.”
“If she is showing signs of dystonia, give her Benadryl,” I reply. “You have the letter from Dr. Howe authorizing you to dispense it.”
“It’s not that. Janni’s exhibiting behavior that is very alarming to us.”
I don’t ask what the behavior is. I’m sure it’s what we see every day.
“We called your wife, but she is refusing to come get her.”
I know why Susan’s refusing to come get her, and it has nothing to do with Bodhi needing his vaccinations. It’s the same reason I don’t want to go. Nobody will help Janni. Even at the hospital on Monday, we couldn’t get someone to talk to us about what options we had. The social worker there said there were, once again, no beds available at UCLA; we wanted her to go as an inpatient for observation on the Haldol. Even the doctor who treated her thought she should be an inpatient, but we were told there was nothing they could do to help.