If I could control the universe, Jani would be fine.
Why would I want to control the universe? Come on. Everybody wishes they could control the universe. We all want to control the universe because if we controlled the universe and its variables we could prevent ourselves and those we love from getting hurt.
If we could control the universe, we would have nothing to fear.
Calalini is back again. Our world, my world, Susan’s world, is at the mercy of the variables of our universe. Calilini, though, safe inside Jani’s head, is a constant.
For those of us who don’t know what psychosis is like, we imagine that having reoccurring hallucinations would make it impossible to have any sense of constancy, and therefore safety. But that is because we assume our world is constant, which is really just a trick of perspective. Our world isn’t constant at all. It is dynamic and constantly changing. In order to get anything or anywhere in life requires a constant process of negotiation with our environment, namely other humans around us with their own thoughts, fears, wants, and desires.
When I want something from you, I can’t guarantee that you will agree to give to me. If I want to do something, I can’t guarantee that you will let me. I have to state my case and hope for the best. Since I think we are basically good people, we will generally grant the wish of another person as long as it doesn’t come into conflict with our own.
So, even though you don’t realize it, from the moment you wake up until the moment you go to bed, you are praying that the people around you are going to help you do what you need to do and therefore get you through your day.
Now consider hallucinations. Even if they are scary, even if they come and go without warning, they are still more constant than anything in our world because their needs never change. I dislike the residents of Calalini because they won’t share Jani with our world, but they have a distinct advantage. They are constant. They never change.
The only way to keep Jani’s psychosis at bay, even with the medications, is to try and make our world as constant as possible, which brings me back to my first line: If I could control the universe, Jani would be fine.
Or would she? After all, I am a variable myself. Some of you read my last blog where I talked openly and honestly about me and Susan’s marital struggles over the years and feared we were on the edge of getting a divorce. We’re not. Even if I didn’t love Susan anymore (although I do now more than ever), Susan and I cannot divorce because we, like Hebrew National Hot Dogs, “answer to a higher authority,” in this case Jani’s psychosis. Divorce is a variable Susan and I can control and can shield Jani from, so it will never, ever happen, I can assure you of that.
Once again, we are reaching the financial limits of our ability to pay for two apartments. It is August 2nd right now. The deadline to pay rent is tomorrow, Tuesday. I don’t even have enough to pay the rent on one apartment, let alone two. Despite having earned a Master’s Degree and become a college instructor, I feel like I am practically indigent. Thank God this was my career prior to Jani’s illness become acute, because at least I can still (I hope) teach a class here and there and make some money, enough to put food on the table. If I’d had a traditional nine to five job prior to Jani’s psychosis taking off, we would literally be starving. Or Jani would be in residential in Texas and we would only have one apartment. Neither is particular appealing.
The other day, I had two people at different times come up to me and ask me if I worked for North Hollywood Ice Company. They asked because I was wearing one of their t-shirts. I said no, I got it from a friend. You think with everything else I have shared on this blog I could tell them the truth that I was wearing a shirt I had picked out from a bag of clothes donated to Jani’s therapist’s office, but I just said I got the shirt from a friend.
Fear starts to grip me every time we approach the end of the month and I get frustrated with Susan because she seems oblivious to our predicament. She isn’t. She just knows that saying something in front of Jani will shake her sense of constancy, which is the mistake I made. Part of Jani’s constancy is needing to eat out every day for lunch, which is getting more and more difficult to do. I mentioned as much, trying to force my reality on Jani, which was a huge mistake. Jani responded by refusing to eat that day, even when I suggested we go to one of her favorite places. “I thought you were hungry?”
“I’m not hungry,” she answered.
“Jani, it’s okay. I have enough money for Wendy’s.”
“No, you don’t.” She didn’t state it accusingly, just as fact.
Oh dear, what have I done? “Look, Jani,” I opened my wallet and pulled out a twenty dollar bill, my last twenty dollar bill. “See? I have money.”
Only then did she agree to go eat.
It was a painful lesson. I cannot force my reality on Jani. Her reality may conflict with mine but I have to find a way to make the two fit together. I suppose that sometimes I resent the fact that the reason I am so broke is because of trying to maintain two apartments just for her.
Another variable I can control. Eviction notices take awhile to work through the system in LA County so I can shield Jani from our money problems and I am sure something will come along before then. Remember, life is a series of good and bad things.
But not all variables I can control.
The strange thing about this blog is that I was going to write about how well things had been going lately. Through the month of July, Jani had been doing better than she ever had. The school district was providing her an hour of occupational therapy three days a week, which Jani loved, more than any traditional schooling she has ever had. In May, we couldn’t get her to work even her hour in school as part of her home-hospital care, but occupational therapy she was focused and happy and had no problems doing her hour.
And then on July 23rd, the summer session ended. No big deal. School starts again on August 11th. She will only be without her occupational therapist for three weeks. Granted, when school starts she will only have once a week again until her IEP on August 25th when we can try to get the district to restore the three times a week (assuming her occupational therapist is even available three times a week once the school year starts and he has to work with a much larger student body again.
But it hasn’t been a big deal. In just a week, Jani has started to spiral. The first signs are innocuous enough. She starts talking about missing UCLA and wanting to call the staff there, which we allow her to do.
However, the other night, when we came over to Bodhi’s apartment, he ran up to her, wanting to wrestle and play, as they have been doing all July. Jani has been really great with Bodhi lately, affectionate and loving. But the other night, she pushed him away and said “Go away, Bodhi.” Of course, he just kept trying to climb up into her lap. “Go away, Bodhi.”
It was better than hitting him, but this is his apartment. The whole reason we have two apartments is so he can have his own space to do what he wants without fear of Jani. I had actually started to wonder if we could all move in together again but this was a strong reminder that she is still not able to live with him and he is not yet old enough to defend himself.
I told her “No, this is Bodhi’s apartment and you can’t control what happens here. If you can’t deal with Bodhi then we will have to go back to your apartment.”
But she wouldn’t move. She just kept pushing at him. It was like the last six months of progress had just been erased. I ended up having to pull her into the bedroom to keep her away from Bodhi. We couldn’t leave because I was still making dinner, Jani hadn’t eaten yet, and I couldn’t afford to take us out. Also I wanted the family dinner together. Bodhi is old enough to open doors and kept trying to go in because he wanted to play with Jani. He isn’t afraid of her and we want to keep it that way. But for that brief moment, it was like we were back living in one apartment, living in fear.
The other good thing is that Jani and I have been going to the local animal shelter. We have become unofficial volunteers, cleaning litter boxes, feeding the cats and giving them water. When Jani has a task of taking care of animals, she can work for hours. She has worked nonstop at the shelter for four hours on several occasions, with no mention of her hallucinations or any sign of a thought disorder. Officially, Jani can’t volunteer there until she is sixteen. Some of the officers and staff let her though, because they know her, know her story, know how hard she works, and are willing and able to bend the rules because it makes her happy to help.
Unfortunately, the officers and staff on duty this past Saturday weren’t those officers and staff. They were the ones afraid of being sued should Jani be bitten or scratched. They were afraid of losing their jobs. Or maybe they just didn’t want to make the effort.
Either way, I can’t control who is working at the shelter and whether they will allow Jani to help.
And not being able to help with the animals was followed that night by her pushing Bodhi and telling him to go away.
Today Jani was rapidly “decompensating,” even though a week ago she was doing great. Is not seeing the occupational therapist and not getting to help with the animals contributing to this? Almost certainly. Is there anything I can do about it? No. There are limits to how much I can control the constancy of Jani’s experience in this world. Things that are mild disappointments to us for her open the door to her psychosis returning. She can’t understand the temporal nature of not getting her way on a particular day, can’t understand that even if today wasn’t a great day, that doesn’t mean tomorrow won’t be, that even if this week wasn’t great, next week could be.
It is hard to get her accept the ups and downs of our world when Calalini never goes up and down. Calalini never changes.
In my old blogs, I used to rail against those who I felt stood in the way of Jani’s stability. Now I understand that it isn’t that they are standing in her way. It’s just that the rest of world doesn’t revolve around Jani’s psychosis.
And we do.