Michael Schofield has a blog entitled Jani's Journey and I have been perusing his posts. Below I cut and pasted one of his posts for your viewing. Again, I do not condone the abuse that I hope has now ended however I do have sympathy and empathy for these parents that are struggling to raise a young daughter with a severe mental illness.
To read the original post from Jani's Journey click here.
Something's Burning
Wednesday, June 17, 2009
"400" plays with "Wednesday," "Wednesday plays with "Sunday." "Sunday" plays with Jani, Jani is happy again.
Jani says she is only happy when her "friends" are with her. But she never smiles when she says this. Schizophrenics don't really understand emotions. Jani describes her emotions as actions, not feelings.
"Why did you hit Bodhi?"
"Because he was going to break my toy." (All he had done is pick it up-that is the paranoia)
"But what did you feel when you hit him?"
"I felt like I wanted to hit Bodhi."
She never says she was angry or afraid. Only that she felt she wanted to do something. Because the schizophrenia robs her of the ability to feel anything at all. She can think. She can't feel.
Yes, I am learning in this jeux sans frontieres. And it is games with frontiers because there is no aspect of Jani's life that is free from her thought disorder and ever increasing paranoia. I am learning to live with Jani's schizophrenia, although "live" is relative. We don't really live. We survive. I feel like Charles Heston in Planet of the Apes. The planet that they crashed on seemed devoid of life. Dodge reported that the soil was incapable of supporting life. Taylor, Heston's character, laughs maniacally at the discomfort of the other two astronauts. He laughs in the fact that everyone they have ever known has been dead for centuries because of the time dilation caused by Relativity. They set off through the desert, only because there is no going back. I feel like that. There is no going back. The rocket back to my previous life has sunk. We walk blindly, through some sort of brain function that continues to move our legs and arms even when there is no hope.
And then they find one single flower. That is what my life is like. I no longer think in terms of good days and bad days. Jani's illness is so far progressed now that there are no purely good days, but at the same time there are no purely bad days. There are only moments now. There are happy moments, like today when we went swimming as a family. We looked normal. Jani smiled a few times. I live for those smiles. I get them all the time from Bodhi, who smiles at everything from a hug to the simple joy of throwing a toy into a dirty toilet bowel. But Jani hardly ever smiles, and when she does it is literally only a moment. Her eyes are dark most of the time with the torment of her thoughts but every so often, through Herculean effort on the part of Susan and myself, the eyes clear for a second. She smiles at a joke or a happy memory. And then the clouds come again. I live for the chance that even for a second, I can still reach her.
But it is not easy. Today, at Denny's, remembering the experience of yesterday, I would not let her hold her own glass as she drank lest she spill some on herself. I would see her reaching for a glass and drop my sandwich in a panic and grab it before she could and gently guide it to her lips, carefully. Flipping out over water spilling seems to have a lot to do with her temperature. If she hot, she doesn't mind getting wet. Her mind will allow that. But if she is indoors, she will scream and try to take off her clothes. So the only way I can take her out in public is doing every single thing for her.
When Jani is lucid, she is very cooperative. Those moments are becoming increasingly rare again. I think her delusions are getting angry that we haven't thrown in the towel and keep holding on to her by our fingertips, and so they are redoubling their efforts to take her. They make her throw her shoes when I ask her to put them away. They make unreasonable demands on her, and in turn on us, which they know we can never possibly meet, although we try. And I know all this because, again, when she is lucid, she is happy to help. She wants to be good. In truth, whether Susan or I discipline her has no bearing on her behavior. We can give her everything she wants and she will still hate us. And we can give her nothing and she will be fine with it. It all depends on whether the delusions decide to rattle the cage.
The hardest part is to keep going all the time. I brought Jani home after lunch, with the idea that we would go swimming. I was already exhausted from just getting Jani through Denny's and the Do-it Center Hardware store (to get play sand for her and Bodhi). We just bought a Mac mini and are using it with Dell peripherals and I knew Susan needs to print for Bipolar Nation and she would get frustrated and flustered and go spend money we don't have printing at Kinko's if I didn't get the Dell laser printer working with the Mac. So I figured I could take a moment to download and install a driver. Jani, already in her swimsuit, immediately began saying "Let's go." I tried to put her off a few times with "Just a second" but I ran out of seconds. Then I tried to tell her it was "quiet time" like she had in the hospital, but it took an entire staff to keep her in her room. Jani cannot be quiet until she is asleep because in the quiet the voices come. They tell her she has nothing to do, even though her apartment is filled with toys and activities. She cannot entertain herself. Alone, she is at the mercy of her delusions. So she started trying to destroy things. Why didn't I suggest an activity for her? I did, but it won't work unless I engage in it WITH her. Yesterday, when Jani found her apartment full of social workers, she ran. Joanna, the WRAP coordinator, told Susan to go after her. Susan was holding Bodhi. Susan asked was she supposed to drop Bodhi and chase Jani, put Bodhi gently down and leave him alone while she chased Jani, or run with Bodhi and risk tripping and slamming his head on concrete while chasing Jani?
That is what people don't understand. That is why I can't come to your social activities that my friends and co-workers kindly invite me to. That is why my world is getting smaller and smaller. That is why I do not think I can teach right now. Jani cannot be left alone. Not physically. Not mentally. That is why I write this at whatever time it is now.
In order to finish setting up the printer, I had to drag Jani into her room and lock her in until I was ready. When I told her to wait, the voices told her to run. I had to chase her down and drag her back. Eventually she will be too big for me to drag back. We are in the twilight of being able to physically control her. Time-outs do not change Jani's behavior. She cannot really learn anymore, at least not in the short-term. The skills that kids her age learn to deal with adults ignoring them will take Jani a lifetime.
In truth, I locked in her room to stop her from running away while I took a break, a few seconds to keep my sanity. It sounds horrible, I know, but there is nothing else to do. Originally, Susan and I thought our "shifts" as Jani's staff would be entire days. We figured we could do a day as long as we had a break the next. But now we are realizing that even a day will kill us. The number of hours each parent can take Jani is shrinking. Without school, Susan and I would have to relieve each other after only about two hours. That is how constant this is.
Susan and I are burning up. We are what is burning. Susan watches me begin to lose patience with Jani and tells me to calm down. Then she takes over and I watch her start to lose patients. We count breaks in seconds, not hours. I spent every moment of four hours today engaging Jani's mind before I started to lose it around 4pm. Susan was the picture of calm, but by 7pm she was so rattled that she dropped several plates on the kitchen floor and shattered them, then had to jump across glass pieces because Jani was demanding food and spitting out what we offered. I, fresh from a two minute smoke break, calmly swept up the glass.
This is what WRAP doesn't understand. There are no words that can help. There are no strategies. It is just engage Jani's mind or let her become psychotic. That is all there is.
***
To view Michael's blog go to Jani's Journey
To view his former blog about Jani go to January First (Notes from Calalini)
To view Susan's podcast go to Bipolar Nation Radio
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