On her schedule board I write Dinner (Go to Bodhi’s) in the 5 P.M. slot. We’ll eat meals at exactly the same time Jani eats at UCLA. I worry about taking her over to Bodhi’s, even for just an hour, but Susan and I feel it is important to be together, to remind ourselves that we’re still a family. Splitting up is, ironically, the only way to keep our family together. This way Bodhi can have his space, free to explore his world without fear of what Jani might do, and Jani doesn’t have to worry about hurting Bodhi. And most importantly, Susan and I no longer have to live in fear every second.
I rub my hands over the walls of Jani’s old bedroom, over the words she wrote during her time-outs. I tried washing them off, scrubbing for hours, but could never completely erase them. My hand pauses over the outline of 400, scrawled in giant numbers above where her bed used to be. I’m sorry, Jani, I think to myself. I didn’t know.
I walk out of her bedroom and leave the keys on the mantel, glad to be leaving this apartment. I never want to see those walls again.
June 1, 2009
Today is discharge day. Jani has been in UCLA for more than four months, making her the longest continuous resident on the child and adolescent psychiatric unit in decades. Dr. Kim and UCLA knew we needed time to get into the two separate apartments, so they fought off Blue Shield until we completed the move.
“I think it is great idea,” Dr. Kim said when we told her our plan. “It’s really thinking outside of the box.”
I look down the discharge sheet that Dr. Kim has handed me to sign and see Discharge Diagnosis. Next to it, handwritten, is the word Schizophrenia. The word stares me in the face. It’s the first time I’ve seen it written on a medical report that has to do with Jani. My six-year-old daughter is now officially labeled with the most severe mental illness in the world.
Below the discharge diagnosis is Expected Course of Recovery, with three boxes that can be checked: good, fair, and poor prognosis. Kim hasn’t checked a box yet. She sees me looking at it.
“Sorry. Forgot that one,” she says, removing a pen from her pocket. She checks fair.
Fair. Not quite good, but not quite poor, either. Fair is right down the middle. Fair is a C in college. I’m not sure whether she really believes that or if she just wants to give us hope. It doesn’t matter, though. It wouldn’t change what we’re doing.
I sign my name at the bottom of the page. Dr. Kim hands me my copies and looks up. “I just want to say that I have really enjoyed working with all of you these past few months. Jani is a very special, very intelligent little girl.”
“What do you think will happen to her?” I ask Dr. Kim.
Kim sighs. “I think … I wouldn’t let go of hope.”
I smile. “You’re a doctor. You have to say that.”
“I’m not saying it as a doctor. I’m saying it as someone who has come to care deeply about Jani and your family. I have hope she will make it.”
I offer my hand and she shakes it. Her time as a fellow is over, and she is now rotating off of the unit. Chances are I will never see her again. Despite myself, I reach out and embrace her.
“Thank you,” I say.
She hugs me back, breaking the rule that says doctors are supposed to maintain a certain distance.
“For what? Jani has gotten better because she has worked very hard.”
“Thank you for having faith in her,” I answer.
“I have a lot of faith in her,” she tells me as we break off the hug. “I also have a lot of faith in you and Susan.”
I nod, unable to meet her eyes. As hard as I try, I cannot find faith of my own. Jani is better, but “better” is a relative term. Dr. Kim speaks of Jani’s “baseline of psychosis,” meaning the level of psychosis that is “normal” for her. Now we have to see how well, or even if, she can function at all outside of the structured and secure environment of the hospital.
It is time to go. I’m carrying two suitcases plus three full-sized plastic bags that contain everything we’ve brought, along with all the art therapy projects Jani’s made in the last four months.
“You ready to go, Jani?”
Jani hugs each of the nurses and Dr. Kim. A few of them are tearing up. None of them has worked with a child as long as they have all worked with Jani. Watching her say good-bye, it feels like they are more her family now than we are.
Done with her good-byes, she turns to me, holding Hero.
“You ready to see your new apartment?” I ask.
She rubs her hands together, excitedly. “Can 24 Hours come, too?”
I pause, remembering what Dr. Kim told me in our last family session. In all likelihood, the hallucinations will never completely go away.
“Sure,” I reluctantly reply.
Jani turns back to the empty corridor. “Come on, 24 Hours! Let’s go!”
WE FINISH OUR dinner.
“Who is my staff tonight?” Jani asks. “Mommy or Daddy?”
I’m cleaning the dishes. “Who do you want?”
“Mommy,” Jani answers.
“Okay.” Susan smiles.
I don’t mind. Jani needs to get used to spending time with Susan again, and I’ve never spent a night alone with Bodhi.
Jani comes over to Susan. “Can we go now?”
“Sure,” Susan replies, gathering her clothes for tomorrow. Most of her clothes are here, while most of mine are in Jani’s apartment. I’m not sure why I told the movers to put the boxes with my clothes in Jani’s apartment. Maybe I don’t really want to alternate nights.
I hug Jani good-bye. “I’ll see you tomorrow, okay?”
“Okay,” she answers, more relaxed than I’ve seen her since Bodhi was born. She likes this arrangement. When I asked her why on the drive home from the hospital, she said, “So Bodhi won’t get into my stuff and I won’t hit him.”
I think having her own place, away from Bodhi, has taken an immense amount of stress off her. She doesn’t have to fight with her mind every minute to not hurt Bodhi.
I kiss her on top of her head. She opens the door.
“Come on,” she calls to Susan.
“Coming,” Susan replies.
We lean toward each other and quickly kiss, then she’s out the door after Jani. I can’t remember the last time we kissed. With a shock I realize it was the night before Bodhi was born. We haven’t kissed in almost two years.
Bodhi starts to cry, realizing Susan is gone. I go over to him and pick him up in my arms. “It’s okay, little guy, Daddy’s here. You’ll see Mommy tomorrow.”
I stand in the middle of his apartment, holding him, trying to console him. His mother is gone for the first time ever.
I go to the window, push aside the blinds, and look out, seeing Susan and Jani crossing the parking lot. I watch them until they disappear into Jani’s apartment.
Sunday, June 7, 2009
I have to take Honey out. It’s been so long since she’s run freely. I tell Susan over the phone that we should all go as a family up to the local high school.
“Can’t you just take Honey for a walk around the complex?” Susan asks me. “I can watch both kids for ten minutes.”
“Honey needs longer than ten minutes. She needs to run and roam freely.”
“I know,” Susan admits. “But let’s wait until Dave and Cameron get here. Besides, it’s hot and Jani burns easily on the Thorazine.” The only thing keeping Jani in our world at all is 200mg of Thorazine. Unfortunately, one of its side effects is extreme photosensitivity.
“I can put lots of sunblock on,” I reply.
“Why won’t you just take Honey for a walk and come back? We can always go later when they’re here.”
I suddenly get angry. “Because I want to have a normal day together as a family. Can’t we just have that for once? I’m not even asking for time alone. I just want one day as a family.”
“I think we’re taking a risk,” Susan warns.
“It’ll be fine. I’ll bring toys, food, and water. We can have a pic
nic up there.”
• • •
IT’S HOTTER THAN I had expected, so I set up the toys in the shade by the tennis courts. I hope to keep Jani engaged for a few hours, playing with me. Just like old times.
“Jani, let’s scooter,” I call to her, seeing her scratching the top of her head roughly.
“My head is itchy,” she whines.
“It’s the Thorazine,” Susan says, sitting with Bodhi in the shade.
I feel anger building up inside of me. “It’s not the Thorazine,” I shoot back. “We just got here. She’s got sunblock on and she’s in the frickin’ shade. It’s a tactile hallucination.” Jani’s hallucinations are not limited to sights and sounds. All five of her senses experience hallucinations.
“It’s too hot,” Jani complains.
“It’s not that hot,” I answer her. “It’s still in the eighties.”
“I’m hot,” Susan says, “so I can imagine she is.”
“You’re not helping!” I glare at her.
“I want to go,” Jani announces, still tearing at her scalp.
“No. Honey hasn’t had any time to run yet.”
“I think we should go,” Susan says. “This was a bad idea.”
I can feel myself losing control of my emotions. I am getting angry as I sense my “family day” falling to pieces.
“I just wanted us to have fun as a family. Is that such a bad idea? At least I’m trying, which is more than I can say for you.”
“Did you take your Lexapro this morning?” Susan asks.
“It’s in Bodhi’s apartment,” I answer.
“You need your medication,” Susan says sternly.
“It was in Bodhi’s apartment!”
“You need to take it so you don’t get like this,” Susan says.
“No, you need to back me up so I don’t get like this,” I retort. “Jani, get back here now.”
Jani, already at the car, reluctantly comes back.
“Okay, do you want to play dog ball?” I ask her, which is where we throw a tennis ball to Honey.
Instead, Jani gets on Bodhi’s toddler train and pushes herself along. She looks ridiculous. I remember reading about schizophrenia eating away the gray matter of the brain. She was a genius and now she’s riding a toddler’s toy.
Dave and Cameron pull into the parking lot and Cameron leaps out, running up to Honey, who’s already barking at him.
He recoils.
“Honey!” I yell at her, then to Cameron, “Don’t be afraid! Dogs pick up on fear!”
Honey jumps and nips at Cameron, and he flinches away.
“Cameron, are you okay?!” Susan gets up with Bodhi in her arms and rushes to him as I grab Honey.
“He’s okay.” Dave’s walking faster than normal, sweating in the heat. “The kid’s done far worse to me.”
“I’m hot!” Jani screams, getting off Bodhi’s train. She returns to scratching her scalp.
“You want me to fix it?” I ask.
She nods. I take a bottle of water and slowly pour some over her head to cool her off.
“Feel better?” I ask.
Jani nods. Then she looks down and sees that water has spilled onto her shirt. Her eyes open wide and she screams.
“I’m wet!” She tugs her shirt off.
“Jani, what are you doing?”
“I have to get new clothes!” she cries.
“It’s just water. It’s a hot day. It will keep you cool.”
But Jani is stripping off her clothes.
“I have to take her home,” I say.
“We need to all go,” Susan says.
I look back at Jani, pulling off everything right in front of Cameron.
“Jani! Stop that!”
“I’m wet!” she cries again.
“Fine, we’ll go home and get you new clothes.”
“We should all go.”
“No, I’m not taking Bodhi back with Honey. Honey will step on him and he’ll cry, then Jani will fly into a rage. Just stay here and we’ll be back.” We all came up together and we’re still going to have a picnic. I refuse to give up on my dream of a “normal” day.
I get Honey into the car. “Jani! Let’s go.” My voice is angry. I’m angry. All I want is for us to have some fun as a family, but either the schizophrenia or the drug to treat it keeps getting in the way. Is this how it’s going to be for the rest of our lives?
“And please take your Lexapro!” Susan begs.
Jani cries that she’s burning.
“You were just complaining about being wet!” I yell. “If you don’t want to burn, put your clothes back on.”
Jani does, crying like I’m abusing her. This is not what I wanted. I wanted a fun day for Jani to look back on, to replace the fun days with me she no longer remembers.
“It’s still wet,” Jani cries.
“Then get in the damn car!”
“You’re scaring her,” Susan calls to me. “Maybe I should take her. Jani, do you want to go with Mommy?”
“We’ll be fine,” I yell. But I’m not fine. I haven’t felt fine in years.
I floor the car out of the parking lot and into the street. The speedometer hits fifty, sixty, then seventy. I look over at Jani and realize she isn’t wearing her seat belt. She always fights me on that, too. I should slow down. I should buckle her up. But I don’t. Instead, I reach down and release the catch on my own seat belt. I look over at the street-lamps flying past. One flick of my wrist and we’d plow right into one. I’d go through the windshield and everything would be over. I want it to be over.
For two years I have hovered on the edge. Now I am going over it. The fundamental requirement for survival is faith and I don’t have it. I don’t know if Jani will get better or worse. I don’t know anything.
Jani is screaming, but not from my driving. She is screaming about her phantom sunburn.
I think about my Lexapro. Normally I’m supposed to take two pills. But I just got a refill. There are sixty pills in the bottle, each pill 20mg.
Jani is ripping at the top of her skull with her fingers.
“Jani, stop that! You’re gonna make yourself bleed!”
“But it’s so itchy!”
I think about the Lexapro again. Twelve hundred milligrams total. It’s just an antidepressant. Can you overdose on an antidepressant? Maybe if I really want to end it, I should swallow a bottle of one of Jani’s medications. They do nothing for her, but they would probably kill me.
Twelve hundred milligrams. Would that be enough to initiate organ shutdown? Would it stop my heart?
I’m driving thirty miles over the speed limit, hoping to hear a siren behind me. I want to be arrested. I’m tired of being “strong.” I never was “strong.” I can’t fix what she has. I can’t even make her life better.
My cell rings. I know it’s Susan without having to look at it. She is calling, probably worried, as she should be, but I don’t answer. If I answer, she’ll try to talk me down, and I don’t want to be talked down.
I pull into our parking space, get out, and go around to the other side of the car. I wrench open the back passenger door. “Honey, get out!” Honey doesn’t move. She’s scared and shaking. “Dammit, Honey!” I grab her leash and yank with all my strength. Honey falls out onto the pavement and I drag her as she struggles to regain her feet.
Jani jumps out, her face worried. “Don’t hurt Honey!” she cries.
“What do you care? You hurt Honey all the time.” It’s strange to be aware of your own mental and emotional breakdown. I know I should stop. But I don’t. I want to lash out and hurt someone, anyone, like I’ve been hurting for so long.
I head for the stairs of the building Bodhi’s apartment is in. I realize Jani is not following. I look down and see her at the bottom of the stairwell, staring up at me.
“Jani, get up here!” I yell down at her.
“I’ll stay here.”
“Jani, get up here now!” I roar so loud my voice g
oes hoarse.
Jani reluctantly starts climbing the stairs after me.
We get into Bodhi’s apartment. I let go of Honey. It’s cool and dark inside the apartment. I go to the bathroom, retrieve a washcloth, and run it under cold water, then squeeze it out and tell Jani to lie down on the bed. I lay it across her face.
“How’s that? Feel better?” I ask, my voice now completely calm.
“Yes.”
“Okay.” She’s been taken care of. I turn from her, go into the kitchen, and pour a cup of water. Then I open the medicine cabinet, seeing all the pill bottles, most of them full from medications prescribed for Jani that were tried and abandoned.
There is my Lexapro. I open the bottle and toss back my head, fill my mouth with tablets, so many that I feel like I’m going to choke. I lift the cup of water to my lips and drink, my mouth so full that water spills out the sides of my lips and runs down my face.
Reason tries to regain control of me. What are you doing?! I don’t know. I don’t care. I don’t want to think. You could still spit them out, the voice in my head tells me. I ignore it and swallow. It takes several gulps to get the all the pills down. I feel a sharp pain in my throat as the muscles fight to get the solid block of tablets down. I can still spit out what is left. I take another swig of water, then another, continuing to swallow.
Finally, my mouth is empty. I look down at the bottle, still half-full. Dammit. I’m going to have to do this again. I put the bottle to my lips and toss back my head.
“Daddy?” I hear softly behind me.
I turn to Jani, the half-empty bottle of Lexapro still in my hand.
“I found a new pair of pants.” I look down and see her holding them out to me. “Can you help me get dressed?”
I drop the bottle of pills and they scatter across the floor in all directions. A sob comes out of my mouth like vomit.
My body buckles under the weight of six years of emotional repression. My feet slide down the kitchen cabinet, my shirt ripping as it catches on the metal handle of a drawer.
The dam has broken. I wail uncontrollably, tears streaming down my face.
“Daddy?” Jani stands in front of me, scared. She takes a step closer and reaches out her hand and pats the top of my head. “It’ll be okay, Daddy.”
January First: A Child's Descent Into Madness and Her Father's Struggle to Save Her Page 24
