When Jani last left UCLA on Wednesday, March 24th, she confidently told the staff she wouldn’t see them again until Christmas. This was the first time Jani had ever projected a date for her return. On the one hand, this was depressing, for it now means that when she leaves UCLA, she knows she will eventually come back. She doesn’t leave with the blind optimism we once had, the second time she left UCLA, after we had gotten the two apartments and beginning our new lives living with schizophrenia, that maybe this might be it. After all, she had just spent four months straight at UCLA and we had responded by completely reworking our lives to accommodate her illness while still keeping her with us. The five hospitalizations since then have completely shattered that optimism. We know now, like Jani, that every time we leave UCLA the clock starts ticking again, ticking down to when she will have to come back. Jani has become the living embodiment of the Doomsday Clock, the symbolic clock face created in 1947 by the Board of Directors of the Bulletin of Atomic Scientists at the University of Chicago. The Clock’s distance in minutes from midnight represents how close the Board feels humanity is to global Armageddon. Ironically enough, the clock is typically moved either forward or backward each year on my birthday, January 14th. Currently, the clock sits at 11:54pm, six minutes to midnight. During its existence, the clock has been as close at 11:58pm and never any earlier than 11:43pm. Sad to think that in sixty-three years we have never gotten any further than seventeen minutes from the end of the world.
Just like the Doomsday Clock, Jani, has moved around a lot. Just before her third birthday was, I think, her furthest distance from midnight. Back then, she wasn’t even within the fifteen minutes. She was still in the first quarter hour. Even during the hell of her early months, when she never slept, we never thought we were approaching the end. Last Spring, when massive doses of Thorazine seemed unable to stop her violent behavior was probably her closest to midnight. The day she tried to jump out her window was probably 11:57. When she tried to eat Bodhi, that was 11:58. When we thought we could get her into a local residential facility, the clock moved back to 11:56. When, last April, she didn’t recognize me at all, I drove home that night believing we were at 11:59.
Then Susan came up with the two apartment idea, one for Jani and one for Bodhi, and Jani’s clock moved back. When we developed the intern program, it moved back again. When we worked out a limited one hour school day with only Jani, her teacher, and a para-educator, it moved back again. When we found out how effective animals were at keeping Jani distracted from her hallucinations, it moved back again.
Since then, it has ticked forward and backwards, but like the real Doomsday Clock, we have never gotten further than a quarter hour away. Honestly, even with all the support that we have surrounded Jani with, we are still always within ten minutes of a global disaster.
I don’t know why Jani specifically picked Christmas 2010 as her next return date. Maybe she has learned that winter is always her most difficult time. Whatever her reasons, I got the sense that she really wanted it to be true. She knew she would have to return eventually, but she really wanted to get some distance, to try and hold the clock inside her head at minutes to midnight.
She made it fifteen days.
Tonight, she is back at UCLA.
She didn’t want to go. When I told her, she cried and hit at me a little. When I told her, we were visited a woman we visit once a week, a woman who rescues Great Danes. Her house is beautiful, with a large yard, and it is a menagerie. Besides the three current Great Danes, there is a nine year old cat named Kitty that allows Jani to carry her around like a baby. There is a twenty-seven year old parrot named TC that will only talk to Jani, along with another recently rescued parrot that Jani named “Colors.” There is a skittish chicken and a group of doves. This woman’s home is Jani’s Eden and when she is there she is the calmest I have ever seen her outside the time she was on 300mg of Thorazine. More importantly, though, when she is there she is happiest I have ever seen her, the most content I have ever seen her, more so even than with the animals at the local county shelter (which has a cattery where Jani will play with the cats for hours), Petco, Petsmart in Canyon Country (which always graciously allows her to pat and hold their rats), and the horses that we go to visit for equine therapy.
It is Jani’s paradise on Earth, and it was a hell of a place to tell her she was going back to the hospital, but I had no choice. If Jani could live there, perhaps her clock would back up and stay where it should be, where it should be for all children her age, if we use one hour as a metaphor for a human lifetime, in the first fifteen minutes of the hour. Maybe, but I doubt it. Eventually, I am sure, this place, if Jani was there enough, would begin to lose its magical ability to hold her illness at bay. I would like to think not. I would like to think that there is a place where Jani could be free and happy forever, but I have walked with her long enough to know that just as much as we never give up, neither does the schizophrenia. It will always eventually find a way to ruin Jani’s happiness.
I had to tell her then, because she was ready to leave and it was as good a time as any to tell her that UCLA had finally accepted her for a direct admit. I had spent the last 48 hours trying to get her in and the head of the child and adolescent psych unit had finally said yes. He would not say yes without speaking to me and it took that long for me to get a hold of him.
Every time Jani goes back to UCLA, I always go through the same emotional rollercoaster. After the incident that triggers our feeling that she needs to go back, I am in a panic, scared for her safety. I call UCLA, desperate to get her in, and unlike the early visits, there are more hoops to jump through in order to get her back in. Some of this has to do with the standards of Blue Shield, which I skewered in my blog “American Idiots,” because Blue Shield and insurance companies in general will not pay for acute inpatient care unless the patient is an immediate threat to themselves or others. To them, acute means “tried to kill oneself or others.” They fail to realize that as parents we want Jani back in the hospital to prevent this from actually happening. It is like Blue Shield needs Jani to be 11:59:59 to be willing to pay for her hospitalization, when we feel that a hospitalization at 11:56 would prevent Jani from getting to 11:59 in the first place.
But some of it is also that UCLA has spent last year trying to steel us for the challenge that comes with having a child with a serious mental disease. During Jani’s first two hospitalizations, totaling five months, during which time she failed to respond to medications to the level that all of us would like, it became clear that there was only so much they could do. So then their focus shifted to mentally and emotionally preparing us for the battle that we have elected to fight by not placing Jani in residential treatment. So part of the reason we have to jump through hoops is because UCLA knows they, and psychiatry in general, have reached the limits of their effectiveness. They know they can re-arm us from time to time but they can’t fight the war for us. I have to jump through hoops to get Jani back into UCLA now because the UCLA doctor needs to know has Jani really taken a turn for the worse or are we just cracking under the pressure? If it the former, they will take her back and take another crack at trying to stabilize her. If it is the latter, they will gently suggest residential “because we need to think about OUR needs as well as Jani’s.”
So, once again, it is similar to where we started, when we had to prove there was something seriously wrong with Jani just to get into a hospital. The only difference is that UCLA, unlike Alhambra or Loma Linda, knows there is something seriously wrong. They know Jani has schizophrenia. But there is only so much they can do about it. Treating schizophrenia in children is always more difficult that treating it in adults, but Jani’s schizophrenia remains the most difficult case they have ever seen, the only one since the advent of Thorazine to be so resistant to neuroleptic medications.
Of course, she isn’t. In my online parental support group for parents of mental illness, there are many kids who psychosis proves resistant over and over again to “miracle drugs.”
Today, we no longer have to prove that Jani is ill. Everybody who matters knows that and ones who don’t mean nothing to me. But in order to get her back into the hospital we have to “prove” that her illness has gotten significantly worse and that her clock really is getting closer to midnight.
But as soon as I get her accepted back in, I always begin to doubt myself. Partly this is because there is, because we no longer go through the ER, a sizable delay between the incident that made us feel she needed to go back and when she actually gets accepted, so that when she finally accepted, we are never in an immediate crisis. It is sort of like getting bitten by a rattlesnake. You know you need immediate anti-venom, but you are deep in a canyon, miles from the nearest hospital. So you tie a tourniquet above the bite and start hiking. An hour later, you finally make it out of the canyon and back to your car. You are still alive, when logic dictates you should be dead by now. You don’t even feel the burning sensation of the venom moving through your muscles anymore. The bite stings a little, but you start to wonder if you have actually beaten the venom. Maybe you don’t need the hospital. Maybe you should just drive home. After all, you feel pretty lucid. So you start to rationalize why you are still standing. Maybe the snake didn’t get its fangs in deep enough to really inject enough venom. Maybe it was a glancing blow. You can almost convince yourself that you would be fine with just a little bedrest and some ice. So you have to force yourself to remember that you were in fact bitten by a rattlesnake. You have to force yourself to consider the possibility that the reason you are no longer in pain is because your nerves are dying from the venom.
In the moment that I first call UCLA for a direct admit, I am absolutely convinced she needs to go back. But by the time I finally get her accepted, when the fight to get her in is over, I am never so convinced anymore. I wonder if it was Jani just having a bad day, or several bad days. I wonder if I am overreacting. I wonder if I am just not accepting the fact that to a large extent we just have to live with this.
So what happened, you ask?
Jani assaulted a plate glass partition with her bare hand. Was she trying to put her fist through the glass or was she just throwing a tantrum? It would be easier to know had there been broken glass and blood, but there was only a few scratches and bruises. But hitting glass over and over again with your fist, seemingly impervious to the pain, simply because your therapist is not yet ready to see you is a bit psychotic? Right? Right?!
One of Jani’s interns had brought her to her three times weekly therapy session. I was on my way to meet them, coming from Bodhi’s swim class tryout. They were apparently five minutes early to the appointment. Jani threw a fit, throwing a large toy across the room (thankfully the room was devoid of children). Then she attacked the glass partition between the waiting area and reception. When the intern tried to stop her, Jani attacked the intern. Then she tried to run.
But when the therapist finally came out, Jani was suddenly fine again, eager to see the fish the therapist has in her office.
The same thing happened with me with her session today, except that I kept my body between Jani and the glass. It came on suddenly and left as suddenly as it came. In fact, after each incident of violence, Jani was happy as a clam and had no memory of the violent outburst.
And then there is what she has been doing to Bodhi.
Mostly good things. She is sweeter to him than she has ever been. She hugs him, kisses him, apologizes when she accidentally knocks him over, plays cars with him, and even feeds him. She has become the model big sister. Except that suddenly she kicked him in the face the other day. Before, her violence toward Bodhi had always been triggered by her belief that he had one of her toys, or his crying. But now, there is no trigger at all. She will be playing happily with him, sincerely happy, and suddenly she will strike. He will cry and Jani will look at him for a moment, confused, as if she is not quite sure what happened. Then she is back. We tell her she can’t hit him, but it is clear we are talking to the wrong person. Whomever actually hit Bodhi took over Jani and then left again, leaving Jani to take the fall for something she doesn’t even remember doing.
Finally, yesterday, at her outpatient psychiatrist’s office, Jani was having a difficult time focusing on the questions the psychiatrist was asking her. Her psychiatrist noticed that Jani was focused on a particular point in space. She asked Jani what she was seeing. Jani seemed to quickly snap back to our reality and said, “Nothing.” And for the first time, we all got the sense that she had seen something but was willfully choosing not to tell us. Before, when asked questions about what her hallucinations were doing, Jani would happily share their activities. Now, she seems evasive.
Is this the beginning of the paranoia, a common symptom of schizophrenia?
For those of you who wonder why I have chosen to interact with Jani’s hallucinations, this is why. It is because I feared this might happen one day. As the head of UCLA’s child and adolescent unit told me today when I shared this with him, with schizophrenics, the world of hallucinations gradually, if not aggressively treated, supplants our world, in effect becoming the reality of the schizophrenic. As the fantasy world comes to dominate the real world, the hallucinations become more real to the victim than reality itself, which makes sense when you think about it. These hallucinations are with Jani constantly. They never leave her. Real people, on the other hand, do. In Jani’s case, as much as the hallucinations make her life difficult, they are also more comfortable for her than the real world. Hence, she doesn’t want to give them up. Nor do they want to go away. They, after all, are in competition with us for Jani’s attention. So it becomes very easy for the schizophrenic to believe what the hallucinations tell her over what the real flesh and blood people in her life tell her. I can see why there are still those who believe schizophrenia is demonic possession. The hallucinations will fight back against anything they perceive as a threat to their survival.
And I fear we are becoming such a threat.
Can you see now why so many mentally ill individuals distrust doctors and psych medications? Of course they do. They are a threat to the fantasy world, which will do anything, even kill its host, to ensure its survival. Schizophrenia is, in effect, a parasite.
So the reason I interacted with Jani’s hallucinations, or at least didn’t react to her interactions with them, was because I didn’t want them to perceive me as a threat. If I am least treating them with a certain level of respect, I hoped that they would continue to do the same for me and allow me access to my daughter.
I accepted long ago that I couldn’t entirely win over Jani’s mind, but as long as I had some influence over her heart, I could keep pace with the encroaching hallucinations. But I am beginning to fear that I am losing the war of the heart as well.
Jani has made many mentions of 400 the Cat lately, one of the oldest and most malevolent hallucinations. 400 keeps trying to get the other cats to drink anti-freeze. Thankfully, we don’t have any. We, and Jani’s psychiatrist, have to ask the same question over and over again to get an answer, but eventually Jani will reveal that 400 is around her. Eventually she will reveal that 400 doesn’t like Bodhi. She doesn’t like Susan either because “Mommy doesn’t like her.” Jani wants to be with me all the time, and now that I think about it, I am the only one who doesn’t tell 400 to go away when Jani tells me she is here. I take Jani to the pet store and pretend to buy cat food for her, because Jani tells me that if 400 gets this or that, she won’t bite. And it is never things a child would want. Jani does say, “If 400 gets ice cream, she won’t scratch me.” She says “If 400 gets salmon, she won’t scratch me.” And Jani doesn’t eat fish.
So I pretend to buy 400 Whiskers cat food or a cat condo, and Jani promptly hands this pretend food or condo to something right next to her. And then she tries to move on, rubbing her hands, excited to see the bunnies or the rats in the pet store. But when I think back, I notice her looking behind her every so often, as if she is realizing that 400 is not satisfied. Then she gets depressed without reason. Then she wants to leave.
What is the plan?
It worked once, but it sent Jani into dystonia. UCLA is hoping that this time, paired with Cogentin and Benadryl, they can give her Haldol without the side-effects (Haldol historically has the most severe side effects in terms of muscle shakes).
The Haldol will replace the Thorazine, but not the Clozapine. Clozapine is a one way ticket. Once you are on, they don’t like to take you off because it is very difficult to restart it. So they will try Haldol and Clozapine together. Which has never been done.
We are being forced to use the neutron bomb to keep the clock from getting ever closer to midnight. It is either that or residential, and I cannot and will not send my seven year old daughter to an out of state residential facility. Why don’t we move to the state where such a facility is, you ask?
Because she still needs to live with her family.
Tonight, when I had to leave her, for the first time she cried. And cried. And cried. I desperately wanted to stay, but it was past visiting hours and Jani’s roommate couldn’t get into her pajamas and go to sleep as long as I was there. So I had to leave. And I could still hear her crying through the doors of the unit as I was escorted out. She wasn’t crying for me, specifically. Maybe she was crying for herself. Either way, it was a rare moment of lucidity, a realization of what she has lost.
I miss my daughter.
I love my daughter.