Well, the good news is that through your incredible generosity, we were able to pay both the rent on Jani’s apartment and the legal fees which we were charged because the apartment complex filed a legal request to have us evicted. I still can’t believe how fast you all came through for us. Within 24 hours of the last blog being published we had enough. I got the cashier’s check and paid rent this morning. We will not be evicted. For November at least, we will be able to stay in the two apartments.
Tonight I write this from Jani’s apartment, the threat of eviction gone, safe again until at least December 1st.
But I am alone.
Jani isn’t here.
She is back at UCLA.
Maybe it’s a pyrrhic victory, a battle that is won but at such terrible cost to the victor that the win is essentially a loss, because in the process of fighting to defend what you have, you lose it anyway. The phrase comes from King Pyrrhus of Epidus, who defeated the Romans in 279 B.C., but at the cost of almost his entire army.
I don’t feel any satisfaction. I feel like I failed.
Was it the threat of eviction that pushed Jani over the edge? I don’t know. Susan and I talked about it only once in front of her, and even then only for a moment. It was Friday. We had just finished dinner at Bodhi’s and I had gone over to Jani’s apartment to take out our dog. On the door I found the eviction notice. The first thing I did was call Susan back over at Bodhi’s apartment. Then I called a friend who is attorney. I had no idea what to do. This had never happened before. When I came back with Honey, I showed her the notice. She asked me what our lawyer friend had said. Jani wanted to go back to her apartment so we really couldn’t discuss it, which was good because it would not have been good to discuss it in front of her. That was it.
Jani is smart. Jani is perceptive. Did this push her over the edge? Did the fact that I had an extra cigarette and popped a Klonapin to calm my nerves so I get her into her pajamas and read to her give it away?
She never said anything or asked about it. That night, after she was asleep, I wrote the blog. When I woke up the next morning, there was almost enough in the Paypal account to cover the rent. We would be okay.
Saturday we went out to a horse ranch where Jani rode and I pulled weeds (I trade labor for the horse therapy because we can’t pay). Jani did well. When she is around animals, I know she is okay. I happily dug up dock sorrel, whose roots run deep into the hard clay soil, and which is also poisonous to horses if consumed in large quantities.
Saturday was a good day.
Jani had no school on Thursday or Friday. Thursday was Veteran’s Day and Friday was a district furlough day. Weekends are hard enough. Jani needs a fixed schedule. She needs to know what she will be doing every day, and it needs to be the same thing (totally unlike when she was a toddler and it always needed to be “new”). The first thing she asks me everyday she wakes up is “What are we going to do today?” and then I see her watching me, waiting, while I desperately try to think of something.
Jani reacts badly to any change in her routine. She has two teachers. One who teaches Mondays and Thursdays and the other who teaches Tuesdays, Wednesdays, and Fridays. But this IEP season and both are special ed teachers. Since Jani goes to school in the afternoon, after all the other kids are gone, this means that her schooling often falls during district meetings or IEPs. In an attempt to maintain the continuity of her experience, her teachers will trade days when one has an IEP and can’t make it that day. Jani doesn’t melt down at this, not like I have seen autistic kids do. At first, she is fine. She goes along with the changes, even happily telling me who will be her teacher that day. But she is rubbing her hands furiously. It is like the fuse has been lit on the end of a stick of dynamite.
When I pick her up, she will say “I had fun,” at school, without prompting, which usually means she is trying to convince herself of that. The hand rubbing again.”What are we going to have for dinner?” Ah…. I haven’t thought that far ahead. Jani waits, then answers the question for herself. “I want rice and corn tonight.” Okay.
We will get home and start making dinner. Jani will help me prepare the food. But waiting while it cooks is hard for her. She paces. She picks up a large spoon and stirs the rice, watching it for any signs that it is ready. I watch her carefully because she will eat it raw. She gets out the butter for the bread we are heating up. She cuts off butter in preparation with a plastic knife. She waits expectantly, watching the microwave tick down. I look away. When I look back, she is eating the butter. Just butter. I tell her not to. I send her out of the kitchen. She wanders. Bodhi runs in from his bath, naked as a jaybird. He runs up to Jani, grabbing her, laughing, wanting to wrestle. She pushes him away. That is new, I think. She hasn’t done that for awhile. Bodhi tries again. He wants to play. Jani pushes him again, “No, Bodhi!”
“Susan?” I call, getting nervous. “Can you come get Bodhi?”
“Hold on a minute. I am in the bathroom,” Susan calls back, annoyed.
“But I’m making dinner.”
“I’m in the bathroom!” Susan calls again, as if I was too dense to hear it the first time.
I take Bodhi and diaper him and dress him in his Pjs. Jani walks past us into the kitchen again. She picks up the spoon and stirs the rice. “Is the rice ready?”
It hasn’t even started to boil.
“I don’t know.”
“How many minutes? Five? Ten?”
She wants an exact number. “Ten.”
Out of the corner of my eye, I see her stir again. “Jani, leave it alone. Let it cook.” She is eating the uncooked rice, lifting the spoon with near boiling water to her mouth.
“Jani, don’t do that!”
Were you afraid she burned herself? No, not yet. Sometimes though, I wonder how I would stop her if Jani suddenly got a thought into her head to pour the boiling water all over herself. In those moments, her brain is the most dangerous thing to her. Her brain can send a message and she will act.
She needs something to do. There is no down time. “Here, help me make the salad.”
Keep her busy, keep her busy, keep her busy.
Saturday. I hate the weekends because there is no school, even though Jani’s school is only two hours a day. At least she has that to look forward. On Saturday, we go out to the ranch, but that isn’t until the afternoon. We have to find some way to get through the morning.
We go to breakfast. Jani wants McDonald’s. I drop Susan off at Western Bagel to get our breakfast and then drive across the parking lot to the McDonald’s. Susan will walk over. I take Jani and Bodhi in. Jani wants French Fries but they are still serving breakfast. She agrees to hash browns and a yogurt parfait. She insists on carrying the tray to the table. She drops the orange juice. She starts to lose it but I assure her we can get more. I ask for another and am given one. Susan arrives with the bagels and we eat breakfast. Jani takes a few bites of her hash brown and a few bites of the yogurt, then says she is full. Then she says she is still hungry. McDonald’s has rolled over to lunch. I get a large French fries. She eats a few. Bodhi reaches for them but she pushes him away. We tell her to share. She insists he will eat them all. There are plenty we say. But suddenly she doesn’t want to eat anymore, as if us making her share with Bodhi killed her appetite. She says she is full. She gets up, ready to go. Where can we go, she asks? I don’t know. Can we go to Central Park, she asks? Sure. Let us just finish eating. She hovers around the table, unable to stop moving. This is with fifty milligrams of thorazine in her, plus 300 mg of Lithium and 100 mg of Clozapine. I ask her if she wants anymore fries. She doesn’t. I pack up the remainder. She takes them, intending to carry them, but drops them, spilling about half on the floor. I tell her no big deal, we can get more, even though she wasn’t even eating them anymore. She picks up the box and throws it across the restaurant, fries flying out and hitting a young woman eating, who looks at me and glares. I ignore this. Jani starts crying, saying she needs more fries. She says she will never get anymore. I hold her arms because she is trying to throw anything she can get her hands on. Susan is going to get more fries. Jani drops to the floor and starts eating fries off the floor. I take her arms and try to get her back on her feet. She cranes over, her arms held by me, trying to get the fries on the floor with her mouth. It looks like she is bobbing for fries. I tell her more are coming. She is inconsolable, insisting that there are no more. It is like she can’t here me. Susan arrives with fresh fries. Jani doesn’t eat them. She doesn’t want them. She wants what is on the floor. Something is driving her to eat off the floor.
I get her outside.
Sunday. The day Susan and I do our Bipolar Nation radio show. We travel first to a friend to drop Bodhi off. Jani wants to see their cat, Vinny. Vinny is dead, but we have been telling her he is at the vet. He is fifteen after all. In reality, he was hit by a car. We don’t want to tell Jani the truth, not when she is already struggling.
In order to do Bipolar Nation, a fifty minute show, the only time Susan and I get alone a week, we must drop Bodhi off with a friend and then drop Jani off with a UCLA intern who helps us out. We do not allow anyone to take both kids together. It is too risky. Each child must go to a different location so the person watching each one has only that child to worry about.
Usually, Jani’s intern takes her to ride the ponies in Griffith Park. Jani didn’t want to go this time. She wanted to stay with us. She wanted to come into the studio. This wasn’t feasible. Jani can’t sit still for a few minutes, let alone fifty. On top of which we had topics we did not want to discuss in front of her because it would be inappropriate. Jason Garrett, one of our resident comedians, was coming on that morning. I asked Susan to call him and ask if he could bring his dog, a service animal he uses as part of treatment for his own bipolar disorder. He said he could. I thought fantastic. Jani and her intern will stay in the waiting room, playing with the dog.
We arrive outside the studio. Jani jumps out of the car, wanting to see the dog. The dog isn’t here yet, I tell her. The dog might not be here for thirty more minutes. Are you sure you don’t want to go ride the ponies? No. In reality, I want her to go, knowing that once she is focused on something else, she will forget about the dog and staying in the studio.
Jani keeps looking for the dog, even though I tell her Jason isn’t here yet. She is moving up and down the sidewalk along Ventura Boulevard. Then she steps out into the street, between our car and her intern’s parked car. MTA buses blast by. Nervous, I try to guide her back onto the sidewalk. She resists. She is trying to get out into the street, where cars race by at 50 mph. I put my body between her and the street. She pushes back against me. She tries to get around me. I have to grab her arms. She is pulling. I don’t know if she is trying to get out into the street, or if she is even aware that the street is there, but that is direction she is trying to go. I am trying to hold her back. If I let go, she will run forward and be run over by heavy traffic. I try to get her to go upstairs. She won’t until the dog arrives. I hold onto her. We feel the slipstream of cars rushing past. Jani seems oblivious. She is just trying to get free, but she is pulling for the street.
Jason arrives with his dog, Lola. Jani turns away from Ventura Boulevard, away from me, and runs up to Lola. I relax, thinking everything will be alright now.
But I didn’t know that Jason never lets his dog out of his sight. I didn’t know he wouldn’t leave her in the waiting room with Jani, that he would insist on bringing her into the studio. This mean Jani insisted on being in the studio too. She still doesn’t want to go to the ponies. She wants to go on the air.
This is the link to the show itself. Jani keeps repeating that she has schizophrenia and the word “dog.” We have a guest on, talking about how ValueOptions, who administers mental health benefits for Medicaid patients in Colorado (and most states), refused to give his nine year old son a psych evaluation, deeming it “medically unnecessary.” Later that same day, at his school, the boy is found sharpening a stick, intending to kill himself with it. The police are called, the same police department that responded to Columbine eleven years ago. Men with guns. The boy bites one of them as they try to talk him out of trying to kill himself.
This is a nine year old boy.
ValueOptions’ bread and butter is state contracts to administer mental health benefits. The “value” they promise is gained by denying every claim they possibly can, which is essentially all of them. They save states like Colorado a lot of money by denying payment for mental health treatment, although in the end the state ends up paying more because these kids wind up in residential treatment facilities (which ValueOptions does not pay for) or jail. States like Colorado choose them because of their low cost, not realizing that they are going to end up footing the bill because ValueOptions denies authorization for inpatient acute care. It is sort of like having a pimple on your face but instead of treating the pimple, cutting off your face.
Throughout the show, Jason is silent. This is because is working to keep Jani engaged, as is her intern, Julian. Eventually, even Susan is called upon to try and help, leaving me to carry the show. I am talking to our guest while three adults try to get Jani out of the studio. You can’t hear most of this because I kill everybody’s mic except mine. We go to commercial break, and I run every commercial and bumper we have, even inadvertently repeating the same commercial twice, for my father-in-law’s time management book. We have to get Jani out for a few minutes because our next topic is Jenna Jamison turning from porn to being a mom, which we cannot talk about with Jani in studio. Susan hurries back as the promos end and says, “We’re a bit bipolar today,” out of breath. Five minutes later, we end the show. We come out to find Jani on the floor. The items that should be on the table in the waiting room are piled up on a desk inside the studio area. Jani had been throwing them. I find out she threw a glass vase at Julian.
The fuse reached the stick of dynamite. Jani was out of control.
It was Susan who made the decision to take her back to UCLA. I was hesitant. Actually I was indecisive. If I had been with her, none of this would have happened. I should have been there. I should have blown off the show. I didn’t because I am trying to help others with mentally ill children. But it is coming at the cost of my own.
Susan insisted she go back to UCLA. I still was indecisive. Susan reminded me she had tried to run into Ventura Boulevard.
I never know how far is too far. I never know when to take Jani back to UCLA or when to ride it out. My instinct is to ride it out, but what if I ride it out until it’s too late. What if I dismiss the violence, her biting herself and sticking foreign objects in her ears because they are itchy, or running into traffic? What if I go back to engaging her and everything is fine? And then she pours boiling water over herself one night while we are making dinner?
How long should I wait?
Thankfully, Susan made the decision for me. She took her. I picked up Bodhi, packed Jani a bag of clothes, some of her favorite books, and her favorite teddy bear. Then I drove to the UCLA ER and traded Bodhi for Jani. Susan left and I stayed with Jani, not sure they would admit her. She was largely fine while we waited. No violence, no trying to run. We were in the psych hold rooms in the ER, where I have been so many times before the security guards all know us. Another patient serenaded us to the greatest hits of Bob Marley. It was actually one of my more pleasant experiences in the ER.
The on call psychiatric fellow came, a nice young lady. She asked me what was going on. I told her, but I had trouble. I was caught between my indecision of whether she needed to be hospitalized. I know it is better to hospitalize than wait for something bad to happen, but what can UCLA do? There are no more meds left to try and I don’t want to put Jani through another med trial anyway. I just wanted her safe. I just wanted her to get what I felt she needed, which was a place to decompress from the stress of our world, your world, the world the rest of us live and deal with but a world that slowly eats away at Jani’s resistance against the citizens of Calalini. She needed a break.
To my surprise she was admitted. On the grounds that “parents felt child would not be safe at home.” Maybe. I don’t know. I have no trouble outing people who deny care or give poor care to mentally ill children on the radio, but I am indecisive when it comes to my own daughter. Am I doing the right thing? Always on these nights I intently wish I could just take her home to her own bed, even as I check her into the hospital.
She started crying inconsolably. Because they were taking too long to come get her and take her upstairs. They would never come, she felt.
When we got upstairs, she cried because she didn’t want me to leave.
What does she want? I don’t know that she knows. Her emotions are ping-ponging back and forth. Maybe that’s a good thing. At least she has emotions. There was a time when she never cried when we left the hospital. Now she does. Now she is in touch with her emotions enough to miss us.
Is she psychotic? She was. Is she now? I don’t know. I think she was anxious. The fuse ran out .
I was deep in doubt, that is until I read two comments from my last blog. I don’t think either one was familiar with our story. One suggested that I needed to get a higher paying job, or that Susan needed to work full-time, apparently assuming our inability to pay the rent on Jani’s apartment was due to an inability to make money, but clearly forgetting why we have two apartments in the first place. We can’t make money, but not because I can’t get a higher paying job. My inability to make more money has a name, and her name is Jani. She needs me. If I could be there all the time, if I had her energy, if had endless ideas for stimulating her, she would be fine.
The second commenter suggested it was “time to make the hard decisions,” whatever that means. Actually, I know what it means. Sacrifice Jani to a residential so I can work more and stop begging people I don’t know for money.
I am a Capricorn, the stubborn goat. I will, and do, say in my blogs over and over again how I am not sure that we can do this. I doubt myself all the time. But if you say it, I say, “screw you.” If you doubt me, then I become convinced I am doing the right thing.
So please, write to me and tell me I should not have let Jani go to the hospital. Tell me I am wrong, that everything I am doing is wrong, that I can’t possibly keep this up, that eventually I will have to make a choice between Jani and my own sanity.
Do me that favor. Tell me I can’t do it.
Because I need to feel like I can.