I’m cracking up. I didn’t realize it until today. I had started dinner for Jani and us, then had to rush out to take our dog Honey around the apartment complex so she could do her business. Jani was in Bodhi’s apartment with Bodhi, Susan, and a new intern. I was rushing because every time I am away from Jani I am always afraid the world will end in my absence. Or at least Jani’s world, which would take my world with it. I am always scared. Terrified is a better word. Not for what could happen to me. When Jani is with Bodhi, there is always a perpetual state of fear. Any number of things could go wrong. Bodhi might pick up one of her toys that she brought with her. We have tried to get her not to do this but a toy, usually a small animal toy, is like a security blanket to her. If Bodhi so much as touches her toys, she reacts even before we have realized what Bodhi has picked up. She will surge across the room and hit him before we have even had time to process what is happening. She is convinced that he will teeth on her toys and that his teeth with destroy them, even though Bodhi is pretty much beyond putting things in his mouth now. But like most toddlers, he is tactile and curious about anything he hasn’t seen before, yet such curiosity is dangerous for him. This is main reason why we got the two apartments, so Bodhi could explore his world without constantly being shut down by Jani.
Or he could knock over a bowl of food or a cup of water (we got rid of all glass), or worse yet, Jani’s water which she leaves around, causing her to lash out at him, punish him, even though we punish neither child for such things.
Or she might just be trying to express affection but in hugging him she will grab him around the neck.
Every time Jani is in Bodhi’s apartment (Jani will not allow Bodhi in her apartment so the only way to have dinner as a family is in Bodhi’s), while one parent cooks dinner, the other must hover between the two children, ready to intervene should the voices in Jani’s head sting her into hitting Bodhi. This leads to us even having to hover while she gives him affection, never sure if she is going to hug him or hit him or a combination of the two.
But once dinner is cooking (back burners only-front burner plates are removed for safety), one of us has to leave the other alone to take Honey out. I used to be able to do this with Jani. Jani used to love going on walks with me and Honey. Later, she would at least come along to take out one of her “friends” to go to the bathroom. Now she won’t come at all. To force her to come is to risk her attacking Honey or melting down in the parking lot, leaving me unable to take Honey and carry Jani back at the same time. Which reminds me, every time we go out in public with Jani, there is a risk, both to her and to others. Jani’s vision is, to our best guest, like having to watch two movies playing over the top of one another, meaning that it takes Jani supreme effort to focus on either one of the movies. One move, of course, is our world. The other is hers. She does her best to pay attention to both, which shows her incredible strength, but it takes all her effort just to focus on the humans interacting with her that she literally cannot see cars in the street or people in front of her. Crossing from the car to any public place requires somebody to hang on to her in case she breaks away suddenly, in case she forgets that our world contains large objects like cars that can kill her. Once in the public space, we must hover to make sure she doesn’t hurt some innocent child who asks to play with her. She wouldn’t hurt them badly, but she can hit them. Last week at a McDonald’s, a woman said to me “I hate to tell you this, but your daughter said ‘I hate you,’ to my son.” I had heard her. I felt terrible. But what could I say? I have no power to stop her. It is not an issue of Jani not knowing how to be polite. When she is not psychotic, she is incredibly polite.
This, by the way, is one of the ways in which you can recognize psychosis. It alters the personality.
I can, and have, taught Jani to be polite all her life, and she was once, and still, on occasion, is. But my corrections to her behavior pale when compared to whatever is inside her head. She can distantly hear my voice. She knows she is wrong. But she can’t help it. Lately, I have noticed that after such an incident, Jani will ask to leave. She won’t say anything about the incident, but I wonder if she is trying to remove herself from what can trigger her psychosis. But this also has the side effect of isolating further from other children. Adults will still let her odd behavior slide, because it is pretty obvious now that she acts younger than she is. Maybe they just think she is tall for her age. She acts like a four year old but has the language ability of a teenager, except that she is starting to slur her words now. Whether this is the psychosis or the medications designed to fight it isn’t exactly clear..
I am trying very hard to live with Jani’s illness, to make my peace with it, but the fear never goes away. Until Jani is in her bed and asleep, I am never free of the fear.
Not that I don’t fantasize about running away from it. I teach two days a week, meaning two days a week I go to CSUN. At the end of my classes, when I reach my car, it takes everything I have to turn the ignition. I don’t want to go home. I don’t want to be responsible anymore. But I have to. Jani is without me and she needs me.
What the hell does that do to a person, to reach the point where you dread going home to your own child?
So tonight I rushed out with Honey, unable to let her take her time and enjoy her walk, feeling guilty that she doesn’t get the trips to the dogpark that she used to get, or the two mile walks I used to take her on, at the same time, hating that I couldn’t just enjoy the evening, feeling like the minutes that I took to walk Honey around the complex was the equivalent of stepping out of the room while a dying person begged you for help.
I had to recharge, but to take time to recharge, even a moment, is to risk that one or both of my children will be hurt while I am gone. We have approximately 10 interns now, and a few days a week there is more than one intern on shift at a time. It is like a party for Jani, two, three, or even four people all focused on keeping her engaged. This is the first time we’ve ever had somebody to spell us for awhile. The only time I ever see Jani happy is when she is with her interns. But to relax for even a moment, to breathe, is dangerous because my reaction time slows. I feel a creeping apathy, a desire to lie down in the road and never get up, while at the same time feeling guilty because I can feel myself beginning not to care.
Next comes the paranoia, the feeling that close friends have failed Jani, failed us, that people I thought I could trust I can’t. I pingpong back and forth between the emotional extremes of apathy and paranoia.
Minor issues become significant. Instead of focusing on all the people I have brought together in the online support group for parents of mentally ill/spectrum kids I created, instead of focusing on the emails and people I personally know commending me, I focus on the ones who leave the utopia for mentally ill kids I am trying to create or the ones who criticize what I feel I have to do (hence, my bad reaction to the 20/20 episode). Soon I start to alienate people, blowing insignificant things up into personal slights. On a related note, I am pretty sure at this point that everybody related to the 20/20 episode from the other families to the producers are angry with me. The producers spent huge chunks of their lives over the past eight months working on this and really tried to do justice to the story and I privately pissed all over it.
When Jani does come home from being with the interns, or I come back from teaching, my reaction times are slow. I can see Jani moving to Bodhi, see what is going to happen, but be unable to respond in time. I stand there dumbly while Susan or an intern jumps in.
Next, I become indecisive. I spent three years making the decisions on Jani’s care. I fought all the fights to get her what she needed. Then suddenly I can’t muster the energy to continue. It all feels so pointless. If she goes back into the hospital, what can they do? They have tried all the meds. If she is not doing well in her hour a day of school, what can I do about? I have brought up ideas but nothing seems to work. The interns who sometimes go to school with Jani tell me that her teacher is disengaging, making minimal effort to teach Jani. I can understand this. Jani is practically unteachable now, and this teacher has already been teaching special ed severely emotionally disturbed kids for six hours. You can say you are going to keep going all you want but there is only so long hitting your head against a wall before you are knocked unconscious. I don’t blame her at all. Nor do I blame Jani. How can she learn when hallucinations swirl around her head? I don’t blame anyone anymore (much to Susan’s frustration, I think). She complains about the school and I am not sure what she wants me to do. I am not sure what to do anymore. I have no sense of certainty anymore. I used to, and the irony is I will still bitterly defend my methods for keeping Jani going (like interacting with her hallucinations), as well as believing, rather arrogantly that I am right and that if everybody would just listen to me I could save all these kids, and my daughter would have others like her and she would re-engage with the world.
Not that any of that is true. Jani doesn’t exactly react any differently when she meets a child with schizophrenia than she does to meeting a neuro-typical kid. Unless they have her sense of humor, and only me and some of the interns do, she will not engage.
Finally, I sink into despair, unable to muster the energy to even get out of bed, and I don’t until Jani hits me hard enough that I wake up.
I am not sure what caused this. It started long before the 20/20 episode aired, although that was a trigger. I hated seeing Susan and I fight all the time on camera. I hated seeing the other families pass judgment on what I have had to do to keep Jani alive, which they have done a few times before the show even aired. Both Cinnamon and Jennifer attacked me a few months back when I was so desperate for money that I was asking friends on Facebook (although not them) for any financial help they could give. I never understood why both of them jumped at me on that. It had nothing to do with them. I don’t know why I became to kicking boy for the other two families profiled in the 20/20 episode (especially since it was Susan and me who brought 20/20 to THEM).
You would think I would be focusing on all the other families who share my vision of mentally ill kids and families together. You would think I would be focusing on the incredible things the ABC News producers said about me. I can’t even remember them. All I can remember is that I got criticized by a nine year old on camera, which is ridiculous I know, except that I saw this girl as another daughter. I comforted her when she knocked one of Jani’s baby teeth out in the hospital. You would think I would be focusing on the mother of a schizophrenic girl who called me a hero. No, I am focusing on the ones who attack me, which is in and of itself a sign that my mental state is breaking down.
I think it started when I started writing the book. Having to go back and recall Jani’s sudden decline ripped me open more than I expected. And that was just the basic events of the last three years of our lives. I had a series of events but no story. It took me a while to realize that the story was basically my relationship with Jani, which then required me to go back and remember the happy times before her illness came, when she was my little girl.
And that was even harder. I think that started to break me because it reminded me, painfully, of what I lost and what I will probably never get back. I know my daughter is still in there somewhere. She comes out every so often. But she has been so changed by the schizophrenia. I want the innocent little girl back that I had. I had to remember all the things I was able to teach her from 18 months-4 years, when she was a sponge, and to realize, painfully, when I ask her what she did during her one hour of school, that everything she “learned” was things I taught her years ago. It is like Jani’s mind is full now and has no ability to take any more knowledge, or the illness won’t let her learn, won’t let her practice, won’t let her fail or succeed. Everything that is left of Jani I taught her and she is still running on that now in the second grade where she refuses to learn anymore or do any of her work. I wonder how much of her IQ has been destroyed.
It is like watching Rome burn. Jani was my empire. Not this. Not the LA Times, Oprah, 20/20, the book deal. All that is just the chronicle of the destruction of what I built up, what I loved, and now I must watch her struggle to express any emotion at all.
If you are angry at me, I am sorry. If you think I am not the person you thought I was, I am sorry. I was only trying to save my daughter. I am still trying to save my daughter. But with each passing day it gets harder to see my little girl inside the schizophrenia.
Sometimes it is even hard to love her, on the surface level. Not on the deep level. On the deep level, I have been more than willing to trade my life for hers numerous times. I have tried bargaining with God on several occasions but God wouldn’t accept.
I love her overall, but minute to minute, second to second, it gets hard because she is black hole that sucks up everything I have to offer. At times like this, when Jani is slipping, there is nothing I can do to make her happy. And it makes me despair.
Today, I spoke to my father. He didn’t see the 20/20 episode, so I explained to him much as I did in the last blog: one girl got better, one got worse, and one stayed the same, which Jani being the latter. I told him it was depressing to see her end the show, which took eight months to film, the same way she started it. I felt that was a negative.
But my father disagreed. “Mike, if she hasn’t gotten any worse, that’s not a negative, that’s a positive.”
It took several hours for the old man’s words to sink in: She hasn’t dramatically improved like Becca, but she also hasn’t gotten worse. She is still better than she was a year ago.
Was my father trying to tell me that Susan and I had actually managed to hold the line? Was he trying to tell me that maybe I am further up this mountain with Jani than I realize?
I think Dad snapped through the paranoia. I know he hates me talking about him on my blogs (he had the misfortune to hear about my suicide attempt for the first time on the Oprah Winfrey Show), but he is also one of the few people I trust because he has no agenda (ironic, considering I do). Other than Jani and Bodhi, my father is the only person on earth that I am truly afraid of disappointing. What he feels about me means a lot.
I think perhaps my father, in his own way, was trying to tell me to remember what I have won, not what I have lost.