Tonight, Jani is back inpatient at UCLA.
How many blogs have I written now that start that way? I don’t know. I don’t want to know.
She is back at UCLA tonight because I couldn’t get up fast enough this morning. I am the last line of defense against Jani’s psychosis. Unless Jani is asleep, I have to be there. If I am not, Jani’s descent into psychosis will increase. I can’t stop it but I can slow it down. I do this by constantly engaging her, every minute that she is awake. There is no break for me. There can’t be.
Last night, it was my night to be with Bodhi, which are my “breaks” I suppose. Bodhi has needs to, but his needs are easier to meet. I can meet Bodhi’s needs simply by holding him. I cannot make Jani’s demons go away simply by holding her. I wish I could. I wish I could hold her and keep her illness at bay, but that is not enough. I have to distract her from things I can’t see but she can.
On Friday, we visited the local animal shelter. The officers and most of the volunteers there all know Jani. Some know of her story, some don’t. On Friday, there was a volunteer who knows Jani and has seen her story. She allowed Jani and me to help take care of the cats. I opened the cans of cat food and scooped it out. Jani chopped it up in the bowls using a spoon. She refilled the dry food and water bowls when asked. She did everything that was asked of her… for three hours. Keep in mind that she can’t follow directions in school for five minutes. Yet here she was, totally engaged, totally present, doing everything that was asked of her. If me or the volunteer needed a towel, Jani got it. Jani helped change the kitty litter. She helped me build play boxes for the kittens. For the three hours it took to take care of all the cats, it was like her illness was non-existent.
If Jani could live at the animal shelter, she would be fine. Around animals, her hallucinations have absolutely no power over her, as long as she is performing a task. It is not enough for her to simply play with the animals. Even then, I see some roughness creeping in, a product of her illness. She will drop a kitten instead of putting it down. She will pet the cats like one would pet a large dog, her hand coming down too hard. But when asked to do a task to help the animals, all of that vanishes and she is totally focused and unhindered by her illness. She is gentle, kind, and engaged.
LA County also assigns juvenile offenders to community service in the animal shelters, and working for the animals has the same effect on them that it does on Jani.
Later that day, we stopped at a local Wendy’s so Jani could get her French fries and cheese sauce (pretty much the only thing she will eat now). On the way out, I spotted a rodent sticking its head up out of a hole. Watching, I realized it was a prairie dog, coming up to eat the roots of the surrounding grass. I told Jani to stay back, fearing that she would scare it back into its hole, but she couldn’t help herself. Of course, the prairie dog did disappear down his hole, but then reappeared and continued eating with Jani and me sitting only two feet away. Jani named him “Poppy” because he kept popping in and out of his hole. He popped up again and before I could stop her Jani stuck her hand in the hole. I started to tell her not to do this as it would scare Poppy deeper underground. I reached out to pull her arm back, only to see that Poppy was just inside his hole, sniffing at Jani’s fingers. I started to warn her that prairie dogs can bite. They have two sharp front teeth for biting off roots. But before I could say anything, Jani moved her hand up over Poppy’s head and patted him. And Poppy let her do it.
Apparently, if Cesar Milan is “The Dog Whisperer,” Jani is “The Prairie Dog Whisperer.” This was a wild animal, a rodent, letting Jani pet it. It was the most amazing thing I think I have ever seen.
She has a gift. One thing I have learned about mentally ill and autistic children is that they all do.
Again, Jani was totally focused and present with Poppy.
It was a good day.
But there were also plenty of signs that the psychosis was gaining strength. On Tuesday, Jani ran away from me. It was after school and we had just gotten back into the car. Jani spilled water on herself and lost it. She opend the car door (we were still parked) and ripped her shirt off. This has been occurring with increasing frequency. It happened in a Chuck-E-Cheese two weeks ago. She ripped off her shirt and dropped to the floor of next to the booth (thank God she didn’t spill on her pants). But she is nearly eight and reaching the age where being topless is not appropriate. My only goal was to get her shirt on long enough to get her to the relative privacy of the car, but I could not get her to put her shirt back on. So I took my own off, thereby violating the “No shirt, no shoes, no service” policy, but better I be topless than Jani. Thankfully a friend let Jani borrow her jacket or I would have had to leave without a shirt on.
When a crisis comes, I do what I have to do, even if that means literally giving the shirt off my back.
On Tuesday, when she ripped off her shirt, we were in the car, so I felt the best way to diffuse Jani’s rage was to let her keep her shirt off and I told her this. But psychosis doesn’t follow logic. Despite my telling her that it was okay for her to keep her shirt off, she started putting it back on, as if she was compelled to do so. Then she took off down the street. I gave chase, but she can run faster than me. I began to think I was going to have to call the police. I jumped back in the car and raced down the street until I was parallel with her and then jumped out again. She had stopped but when she saw me she started running again, right toward a busier street. Praying it would work, I stopped running and yelled for her to stop, telling her I wouldn’t chase her if she would just stop.
Some part of her logical mind was still functioning and she listened. She stopped. I was across the street from her, standing by the car. I didn’t dare approach her for fear she would start running again, and she was within a hundred feet of a busier cross street. She stayed put and I tried to talk her back, to no avail. Then suddenly Jani said she was hungry and it was all over. She said she wanted hushpuppies. I said we had to go to the store to get the mix. She crossed the street and got into the car as if nothing had happened.
The next day, I had to go into the store pharmacy to pick up her meds. She wanted to stay with Bodhi and Susan, who had pulled up alongside, but neither of us were comfortable with this. When Jani is impulsive, we try to keep her away from Bodhi. Last time they were in a car together, she realized he had one of her toys. She grabbed it from him and threw it at his head. So I needed Jani to come into the store with me. She got out of the car, went to the rear, and lay down in the middle of the parking lot. No coaxing could get her to stand up and get back in the car. Sure, I could have possibly picked her up but I have learned that using physical force usually makes these situations worse. In these states, her psychosis has her completely under its control and if I use physical force, it will fight back.
I gently took her hands and tried to coax her up. Susan yelled that a car was coming, and it was, too fast. Instinctively, I turned my back to the car, putting myself between it and Jani. The space between lines of parked cars was too narrow for the car to swerve and the driver seemed to have no interest in stopping. At the last second, Jani got up and I moved her out of the way. Again, part of her logical mind was still present enough to trigger her self-preservation instinct.
So even I am not always able to hold her psychosis at bay, but I have more success than Susan does. So had I been able to get out of bed this morning, I might have been able to keep Jani going for another day. But the problem with having to constantly engage Jani every second that she is awake is that leaves me exhausted. As I have said before, I have a finite supply of energy. Her psychosis does not. It attacks her the moment she wakes up and I have to be there to talk to her, keep her distracted, acknowledge and respond to whatever she is saying about her hallucinations, keep them happy so they allow Jani to function.
And I wasn’t there this morning, so Jani slipped back, insisting that she was in Calalini. This has been increasing, too. Calalini has always existed for Jani, and she would say that she goes there, but could acknowledge in the moment that she was in Glendale or Burbank or Valencia. Now she can’t. Now she is in Calalini all the time. She insisted to Dr. Woodall in our last weekly visit that she was in Calalini right then and that she had arrived via “Great Dane.” She had no memory of riding down Interstate 5 in the car, even though normally she talks about the “Fives” around Interstate 5.
All of her impulsive acts are preceded about ten to fifteen minutes early by Jani looking up, her eyes focusing on something above and in front of her or off to her side. These are the “Nothings” as Jani calls them (so-called because for a long time Jani refused to tell me what she was seeing, screaming “Nothing!” when I asked her what she was seeing even though it was clear she could not take her eyes off something that I couldn’t see). I only got her to admit their presence by making it a joke and saying “So they are Nothings, then. What do Nothings look like?”
Then she told me that they look like dogs, specifically Golden Retrievers. However, she cannot articulate how they can fly. They must fly, because she looks up at them, not down (which is what she does when interacting with 400, Wednesday, or any of the Number hallucinations). Jani can acknowledge that dogs don’t fly but can’t explain how these ones do. She also doesn’t “play” with these hallucinations. Rather, she looks up at them with a look of not-quite-but-almost fear, a concerned look, a look one might give to the sight of a snake slithering through your yard. You don’t panic, but you are sure as hell going to watch it and see where it goes, making sure it leaves.
Jani would not look at dogs this way. She doesn’t look at 400 the Cat or Wednesday the Rat like that.
Susan reminded me tonight that Jani once, when Susan grabbed her because she was walking into people at the mall as if they weren’t there, had told her “People look like dogs to me.”
Which means, I think, that the “Nothings” aren’t dogs at all, but human shaped. The numbers hallucinations are also ceasing to be just numbers and taking on anthropomorphic human shapes.
The hallucinations are evolving into their adult versions. Cats and dogs are becoming human shapes. And like most adult schizophrenics, she is both scared of them but afraid to lose them at the same time. Like the man raving to himself on a street corner, Jani is keeping her eye on them and trying to reason with them (which I have seen homeless schizophrenics actually do-have verbal altercations with their hallucinations).
The goal of the Thorazine and then the Haldol was to buy time until Jani got older and the Clozapine became more effective, but we clearly don’t have that much time. We have weeks, maybe months, before Jani becomes that person on the street raving to herself.
But before you email me and advise me to give up the meds and try “alternatives,” let me tell you what happens to Jani on no meds at all. Given how little her meds work against her psychosis, it is easy even for me to question whether they are worth it.
And then I saw what happens when she doesn’t get them.
Jani actually tells us when she needs her meds and what med she needs at that particular time. But once in the ER, inside UCLA, we cannot give her her meds anymore. Once she is admitted to the ER, only the hospital can administer meds (this is federal and state law). So Jani got her last dose at around 1pm when she was finally taken back into the ER (after repeatedly trying to run out of the hospital, Susan chasing her down while security stood around and watched). Once inside, she got no more meds.
When I arrived and replaced Susan at 2pm, Jani was pretty present. We played with her stuffed animals. She managed to hold on through first the ER doctor consult around 4:30 and finally the psych consult at around 5:30. But by six pm, I turned my back for a moment and she ran out of the room and into the ambulance area. Security simply pointed out that she had gone. I managed to catch up with Jani and grab her between to LA City ambulances parked outside. She was going under one of them, which was running. The response of the nurse to Jani? “You can’t do that, dear.” No shit, Sherlock. You would think that ER nurses would understand that a child trying to throw herself under an ambulance would not be capable of logically responding to a command not to do so.
By the time the psych doctor saw her, she was clearly losing her grip on reality. She showed the doctor a “Five,” insisted she was in Calalini (even telling the doctor how to spell it). Then came the dreaded looking up, which meant that the “Nothings” had arrived. It is not just a casual glance up. Jani lifts her eyes and cannot take them off whatever it is she is seeing. You have to call to her several times to get her attention, if you can get it at all. When you ask her a question, as the doctor did, Jani will look up, like a baseball pitcher waiting on a signal from the catcher, before she answers. It is like the Nothings tell her what to say. It is the only time Jani seems obviously not in control of herself (the running away looks like misbehaving). With the Nothings, she can’t even speak for herself anymore.
We got up to the unit around 8pm but even then she could not take her meds until her blood was drawn and the meds were authorized by the doctor on call and released by the pharmacy. By 8:30, I was reading to Jani. I heard her chewing on her blanket but didn’t think anything of it until Jani suddenly turned to me and asked me if any of her teeth were missing. Then I realized there was blood on the blanket. She had chewed on it until she drew blood. She told me “It’s no big deal. It’s okay” and resumed chewing. Desperate to stop her, I asked her if she was hungry. She said she was so I had the nurse bring toast and butter, which Jani wolfed down. Then the chewing resumed. She was hungry but was so out of touch that she could not ask for food, only chew on her blanket until her mouth bled. Normally, she melts down at the slightest scratch, but this time told me that her bleeding was “no big deal.”
Finally, she got her Thorazine, nine hours after her last dose and started to calm down. She let the blanket out of her mouth.
It told me all I needed to know. Yes, her medications don’t do everything we would like them to do. Yes, they don’t entirely eliminate her psychosis or her hallucinations. But without them, even for a few hours, she begins to hurt herself and is oblivious. The psychosis takes over completely.
Without medication, I have no doubt anymore that Jani would be dead within days, if not hours. She would continue to hurt herself until she gave herself a fatal wound. Yes, on the meds she doesn’t function very well, but without them she doesn’t function at all. Without them, she becomes non-responsive, gradually entering not a violent state but a catatonic one. Without meds, Calalini totally dominates her existence.
Unfortunately, the flip side of that is that the Jani on meds may be the best we are going to get, only mildly able to function and still at the mercy of sudden bursts of psychosis.
I am sure that tomorrow morning Blue Shield will already be pushing for her release. I am sure the Nothings are smart enough to hide themselves from the doctor so Jani will soon appear to be fine again, free from the stressors of our world while she is in the hospital. I am sure she will be released after a week and come home and we will start the whole cycle all over again. I am sure that residential will be brought up again as our only option.
But I will tell you this: she will go to residential over my dead body.
I am the only thing holding Calalini back, and I work my ass off to keep Jani in our world. If she goes to residential, who is going to do everything that I do, everything that is necessary to keep Jani in our world?
You know that Jani asks us now to tell the doctors what she is experiencing? She will tell them if she is pressed by us, but she does so with a great sigh, because she knows that they probably won’t believe her. She has already learned that doctors won’t listen to her, won’t take what she sees and feels seriously. She has already learned that as a child, what she says is dismissed.
She is giving up.
That is why I won’t let her go to residential. Because I do what I have to do to keep her from giving up. She is my child. She is just a patient to them. What reason do they give her to live?
I give her the shelter, I give her Poppy, I give her the knowledge that I will never give up on her.
What do they have?
I don’t mind Jani going to Calalini, as long as it is a round trip, not a one-way ticket.
My only comfort is I was there as she fell asleep.
In silent lucidity.
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