It’s been almost two months since my last blog and it would have been longer had somebody not posted a comment to my old blog, worrying that my long silence was due to Jani falling backwards.
Right now Jani is sleeping in her bedroom in her apartment. Susan is with her tonight. Bodhi is asleep in the bedroom in his apartment, where I am writing this.
We are still here.
In the eight weeks since I wrote my last blog, Jani has not been back to the hospital. She has not been back to the hospital since November.
The stretches of time in between hospitalizations are getting longer and longer. Maybe that is why I don’t get so many emails anymore saying, “The drugs are clearly not working. You need to do____________.” In Jani’s case at least, they are. They have been. Clozaril, lithium, and Thorazine.
Not that I don’t think about their effects. We have two aquariums in her apartment now, for our ever-growing family of adopted turtles. We have three Sliders and a Mississippi Mud. Basically, every turtle that comes into the Castaic Shelter we adopt. The filters in the tanks are loud. And in one of the tanks we have to keep the day lamp on for heat because the red night lamp burned out and I can’t afford a new one right now. So between the noise of running water and the light, I can’t sleep on the couch anymore like I used to. The only place silent enough and dark enough is Jani’s bedroom. So I sleep next to her now. Susan has always done this but I have avoided it unless Jani specifically asks me to. I am still haunted from having been accused of sexual abuse nearly three years ago when Jani was hospitalized at BHC Alhambra. I have blogged about it before and it had no merit, but something like that never entirely goes away. I suppose because it makes me realize just how powerless I am. When it happened, I knew I hadn’t done anything but I also knew I couldn’t prove that. I was totally and completely at the mercy of LA County Department of Child & Family Services. They were actually very decent about the whole thing so its not fear of them. It’s the knowledge that there will come times when you have absolutely no control whatsoever. We probably don’t have control anyway, but there is the illusion of it. There have been many times in my life where I was at the mercy of other people but didn’t realize it. That time there was no way to deny it. I was powerless. Whatever would happen to me, would happen.
But now I have to sleep next to Jani again. And sometimes I will come into the bedroom after writing or working and lay down. And feel the cold of wet against my skin.
And realize that once again Jani is sleeping in her own urine.
I used to smell it before I felt it. Now I guess it happens so often, the bed is so soaked with it, that I don’t smell it anymore. It probably permeates the room but I wouldn’t know.
Jani never wet the bed. Even as a small child. Never.
It is the drugs, of course. I am not sure if it is the lithium or the thorazine. Maybe both. Whichever it is, it not only weakens Jani’s bladder but leaves her totally unaware that she has done it.
I used to wake her up. She would freak out and fall back into psychosis if she knew what happened so I would tell her it was just sweat. She is smart enough to know it isn’t but she seemed to want to believe it. She took comfort in it. I would change her pajamas and lay a towel down across the sheet. And I would lay down next to her to show her it was okay.
Now I don’t wake her up anymore. I just let her sleep. She’ll take a shower or bath in the morning.
I lie in my daughter’s urine and all the things that anonymous people who have written to me to warn of the evils of long term use of anti-psychotics comes back to me and tortures me. Despite the impression I might give, I retain every criticism of me I’ve ever gotten. The ones that tell me I am killing her are the ones that stay with me the most.
Of course, those people always ignore the reality that the other option is the schizophrenia will kill her. But they don’t believe that.
I worry about her bladder. I worry about her kidneys. I worry about her liver. I worry about her heart. Even after her biweekly blood chem panel comes back normal (Jani’s white blood cells are not only incredibly stable but are slightly elevated), I still worry because I know no one really knows the long term risks of these meds. People don’t need to tell me that. I am well aware.
I try to tell myself that it is just like getting chemotherapy for cancer. This has become my standard reply to the anti-drug crowd. You wouldn’t tell somebody with cancer not to undergo chemotherapy so why would you tell someone with schizophrenia not to take medications? Chemotherapy can save the body, but at a cost. Psychotropic meds are the same. They can save the mind, but at a cost to the body that carries that mind. Just like cancer plays the body off against itself, schizophrenia and mental illness in general plays the mind off against the rest of the body.
I don’t regret the medications. Compared to where Jani was two years ago, medications have given her her life back. A life. A quality life. Not quite the same life she would have had without schizophrenia, but she seems happy. She walks up to other children at parks and asks them their names. This is something I have just started to see again after not seeing it since she was two. It is amazing. She can actually reach out to the world now, without prompting. She is no longer entirely locked within her world. She is reaching out to our world.
I see her play with real flesh and blood kids.
And that’s the medications. If we took them away, all that Jani has rebuilt since schizophrenia shattered her would be lost.
Are the drugs damaging her body? Maybe. Possibly. But what would you do? Would you take away your child’s life now on the off-chance of what might happen in the future? Hell, there was a time when I didn’t think Jani even had a future. Now I know she does. I don’t know what it is, but I know she has one.
She has more than a fighting chance now.
But that doesn’t mean that I don’t check on her every so often to make sure she is still breathing.
I still do that.
Even though she has never stopped.
Sometimes I actually have to touch her to make sure, though, because she is in a deep sleep and her breathing is silent. I have to feel the rise of her chest just to make sure.
The fear never entirely goes away.
That is my life. That is her life.
I’ve been silent lately for a couple of reasons. I taught all through the winter, teaching an online class for extra money (which won’t get to me until February because the State of California only pays once a month in general and payments for summer or winter sessions are “special pay” that come at the end of the semester-in the CSU, you are always paid for what you have already done, long after you’ve done it, not what you will do). The deadline for my book is fast approaching which has forced me to write that every night, making the blog fall by the wayside. Another reason is I am sick of writing blogs that are essentially me begging for donations to maintain the two apartments, although not doing that has had its consequences. The internet and TV no longer work in Jani’s apartment. I made a payment but it wasn’t enough. Bills are piling up and in this “new economy” they don’t give you very long now before they cut you off. I haven’t paid the electricity in both apartments for awhile. I am not sure the cars are still insured. An envelope arrived from Mercury Insurance a while ago but I haven’t opened it. There is no point because I don’t have the money. One car will sit for days, even weeks, because we don’t have the money to fill the tank. I haven’t paid the co-payment for Jani’s psychiatrist in I don’t know how long. It’s only fifteen dollars a visit but we have to eat. Our pharmacist actually bought my last supply of Lexapro because there is no generic equivalent yet (patent doesn’t expire until 2014) and my insurance charges $85 for a thirty day supply of a brand name drug.
The other day I took Jani to the grocery store. I got only essentials, but the total cost was $80. I had forty cash and gave that to the checker, then used my bank card. I had forty dollars in my account, or so I thought. But my card kept getting declined. Bank of America used to allow you to overdraw on your account and then just charge a $35 fee. But because of the constant complaints about those fees, they changed their policy. Now if there isn’t enough money to cover the purchase in the account, the charge will be rejected. So when it got rejected the first time, I figured that I must be a bit lower than I thought. I had bought gas for both cars that morning after running on empty for several days. Usually, when you buy gas with a bank card (used as a credit card), the gas station only charges one dollar. This is called an “authorization charge,” the machine’s way of making sure the credit card is good. It is like when you pay for a meal at a restaurant with a credit card. You are charged for the meal and then presented with the charge slip where you fill in the tip. For a day or two, the charge shows up without the tip, with a notice beside it that says “Waiting for final amount from merchant.” Once you fill in the tip, the restaurant cancels the authorization for the initial amount and re-enters the new amount with the tip.
So I figured since I had bought gas I actually had $38, not $40. So I started returning items to come down under $38. Then I ran the card again. Still declined. Okay, I must be a bit lower. So a return a few more items to get down to $32 and run the card again. Still declined.
Jani is standing next to me the whole time, holding a box of Kraft Easy Mac n’Cheese.
“I need this,” she says, as I go through the already packed bags looking for more items to return. I apologize to the line that has formed behind me.
I get down to $30 and run the card again. Again it declines. Something is wrong. I use the internet on my phone to check my bank account, trying very hard not to pay attention to the looks of frustration from shoppers behind me. It takes forever to get into mobile banking.
I am overdrawn. By forty dollars.
The gas station where we bought gas that morning, because it was the closest one and we were so out of gas we were afraid to drive any further (because my AAA membership has lapsed), didn’t authorize just a dollar like our usual gas station. They authorized the full amount, forty dollars for each car.
I wanted to cry. I would have to return another $30 worth of food to get down what I had in cash. How would I do that? What could I return? The milk? The butter? Fighting back tears, I start to go through the bags.
“Let’s go,” Jani says to me.
“Hold on, Jani. I have to return more items.”
“But I need this,” she says again, clutching the mac n’ cheese to her like a stuffed animal. The mac n’ cheese also needs milk and butter.
“I know, Jani.” I am embarrassed and there is an edge to my voice. Jani calls it “You’re getting mean.” I am getting mean.
The woman behind me in line steps up. “I am willing…”
I cut her off. “Yes, I’m sorry. She can go first,” I tell the checker.
“No. I’m willing to pay for you.”
At first I think I misheard her. She sounds irritated and annoyed, which doesn’t fit with what she just offered.
“No, that’s okay. You can go first.”
“I’m willing to pay,” she says again, in a voice one would use with a small child who just broke a lamp in the living room and is trying to lie and say he didn’t do it.
But I am desperate.
“Are you sure?”
“I can do it.” She still seems so annoyed.
I watch her swipe her card. The receipt prints out and the checker hands it to me.
I feel humiliated. It’s one thing to accept help from people when they want to give it to you. It’s another to accept when they feel compelled to do it because you obviously can’t do it yourself.
And I can’t. And I was grateful she did it, which made me feel even worse.
I am burning inside as we drive home.
“Jani, are you ready to move back in with Bodhi?”
“He touches my feet.” This is Bodhi’s latest thing. He is obsessed with Jani’s feet. Every time he sees her he goes to the ground and tries to nibble on her feet. This also coincides with the lost of his intensive early intervention therapies, because he turned three years old and the local Regional Center hands kids over to the school district at three.
This seems so illogical to me. It is like I have forgotten what forced us to move apart in the first place, her screaming at him and trying to hit him when he cried. I have forgotten because things have been good lately. Susan and I have actually relaxed our rule of never taking both kids at the same time. Things are good. Jani got through the winter break without going back to the hospital, and the shaky period for a few weeks after when the effects of no structure of school for three weeks come home to roost.
“Jani, I can’t do this anymore. I just can’t. I can’t afford two apartments.”
She stares me.
“He touches my feet.”
“So what?” Inside I am shouting but the words coming out are quiet. Just angry.
“He touches my feet.”
“I can’t do it anymore, Jani. I can’t live like this.”
“I can’t live with him.”
I look at her and see her looking at me. Her eyes aren’t blank. She is afraid. She isn’t resisting because the psychosis has her mind. She is afraid. She is a frozen CD, skipping over the same line over and over again because she can’t articulate what she really feels.
“What about in March? Will you be ready in March?” March is when our lease is up. We have been late so many times I have no idea if the apartment complex will even offer to renew our lease.
“I can do it in March.”
But she can’t. I can see her, looking down, walking across the parking lot, not looking up to check for cars, tightly holding her mac n’ cheese box.
“March” has no meaning to her. It might has well be forty years. All she knows is it is the future. She does the same thing with her bi-weekly blood draws to check her labs. She starts to scream and cry every time we tell her we have to go. She will beg for this afternoon. We’ll agree. Then when afternoon comes, she will beg for tomorrow. And when tomorrow comes, she will beg for the next day, every time promising that she will be fine when the later time comes.
All Jani has the immediate moment. If you ask her if she can accept something in the future, she will always say yes. Because it isn’t right now.
Usually, when Bodhi grabs her feet, she gently pushes him away. Sometimes she will even put up with it for a while, like a mother animal patiently allowing a baby to gnaw, before she will say, “My feet!” as if it just started or he suddenly hurt her, which he didn’t. It was the same tonight. She let him go for a while, then suddenly shouted “My feet!” and kicked him off the edge of the bed. He fell head over heels to the floor and erupted in tears. She hadn’t hurt him in so long. Seeing him sitting on the floor, bawling, brought back all the awful memories of when she used to terrify him, to scare him to the point that he clutched at us long after she was gone.
Earlier, I had gone on Facebook and wrote what had happened with the woman at the store. “I can’t live like this anymore!” I statused, all in capital letters. A friend commented, “I know it’s hard but you have to remember why you are doing this. For the kids.”
She was right. I could see it in Bodhi, crying on the floor, gathered up by Susan who was trying to comfort him. I could see it in Jani, stone-faced, answering “He was touching my feet” to my demands as to why she had done what she had done, as if I didn’t know. Of course I knew. I had pushed her closer to the edge and she was reacting like a cornered animal.
Yes, she was right. I had forgotten why I got the two apartments in the first place. Not the violence. The kids. Their lives are stable. I got them the two apartments to give them each a place to be safe and to grow. It was a place for Jani to go and a place for Bodhi to live without fear. It was a middle ground where the mental illness couldn’t destroy their lives or their relationship with each other.
That is why I did it. And that is why I had to accept that woman’s charity, even if she didn’t particularly want to give it.
There is something more important than my pride. There are things worse than humiliation. There are things worse than having to beg strangers who read your blog for money.
There is something better than the opposite of all those things. There is something better than being in control of my own life.
Jani’s control of hers.[video: 100×100]