Month: September 2013

The Blind Thousand Yard Stare (Lost)

I suppose I have to write an update on Bodhi. I have to because I am going to appear at the Jani Foundation Bowl-a-Thon fundraiser on Saturday and Bodhi won’t be there. And everyone who read my last blog “Screenwriter’s Blues” is going ask how he is doing. And I really don’t want to talk about it. I hate verbal conversations because they are either too short or too long. Either I give the short answer: “He is not doing well. He’s back in the hospital,” which will be followed either by “I’m so sorry,” or “What happened?” or both, and I will respond that he is still hurting himself. The person will wait for me to continue but I will say nothing more. Then they will tell me that they are praying he gets better soon, or that they believe he will get better, or we got Jani through this and we will get Bodhi through it too.


I let Susan handle the long version because she is better at talking. Susan will tell you everything that has happened in our lives in the past month. She will speculate to what Bodhi needs. That’s fine. That is her way of dealing with it.


The truth is I just don’t have the words. My friends keep telling me that I have been through this before. Like I said, they tell me that we got Jani through “this” and we will get Bodhi through it too. Even I tell myself that this should be easier because it is our second time “down the rabbit hole.” Alice knew what to expect the second time around.


But it doesn’t feel the same at all. It feels worse. Logically, I know it shouldn’t. Although distant, I can still remember feeling like I was losing Jani. Not in the beginning. In the beginning her conflict seemed more with society and I remember thinking if I could only remove her from society, she would get by. Bodhi’s conflict is not with society but completely internal. But, yes, I still remember visiting Jani inside UCLA in the spring of 2009 and seeing her lying on the floor, staring up at the lights. Then I felt like I was losing her. So if I have felt this before, been here before, why does it feel like I don’t know what I am doing again? Why do I feel as lost with Bodhi now as I did with Jani? Why does it feel different?


I honestly don’t know. I think seeing Bodhi, who because of his underdeveloped language skills, seems younger than he is, seeing him hurt himself, bite his hands, and when you take away his hands, he bites his arms, and when you take away his arms he bends forward and bites his thighs and legs. I think seeing that level of self-destruction is the worse thing I have ever seen. Maybe because Jani could articulate why she was hurting herself when she did, even if it didn’t make sense. Maybe it is because Jani is older now, not the little girl she was then. I find myself feeling like she was always older, always a little more in control, always a little bit able to make a choice. All that is bullshit, of course. I wrote a book stating the exact opposite. Maybe it is that Jani can make choices now because her psychosis is currently under control.  A dark secret that I hate about myself is that I resent her. I resent her health, her singing along to the radio when I am in the darkness, her planning dinner. Fucked up, I know. I now resent the fact that she can go on with her life while Bodhi is stuck. When Jani was acutely ill, I refused to move on with my life. I resisted the activities of daily living. I resisted any attempt to “live normally” while she was gone.  Along with Susan, I spent six years trying to bring her back and now I resent that she is able to move on with her life, just like I resented everyone else around me back then. Really messed up. I find myself in certain moments being shorter with her than I need to be, bordering on being mean. I am taking out my pain on her. I risk her stability by talking about drama in front of her that I should not.


God, I am fucked up. What the fuck is wrong with me? Take out my pain over the suffering of one child on the other child who has her own tremendous struggles and has accomplished so much. I was so wrong about Jani. She has accomplished so much more than I ever, in that spring of 2009, thought she would reach. Her efforts are heroic.


I have to stop. She has fought too hard to get her life back. She deserves it. I should not try to hold her back with me in my misery.


I am making it sound like she doesn’t care about Bodhi, which is not true. She is a wonderful big sister to him. Another thing I was wrong about. I figured his fate was to take care of her after we were gone. Now it could be the other way around. Logic tells me he will return and they will take care of each other, fulfilling what I had always hoped when I agreed to have a second child.


But I guess that is it. Logic. I don’t trust logic. I got lucky the first time around. The universe gave Jani back. What if it doesn’t happen again? What if I am not as lucky the second time around? What are the odds that the dice will fall the same way on the table again?


You would think that after Jani’s recovery, I would have faith. Jani defied the worst odds imaginable. But I actually have less. Maybe the real reason I get angry at all the Bible thumpers who write to me telling me to rely on our Lord and Savior is because I don’t entirely trust Him not to be an Asshole. No, it’s not that. It’s just that life is a numbers game. Chaos theory and all that crap.  It’s not that I think God is deliberately going to screw me this time. It is just that God is a craps stickman and he doesn’t control how the dice fall. The game isn’t fixed. It’s all mathematics and probability.


That has always been my struggle with faith. God isn’t calling the shots. He just tells you what the point is and it is up to you to try and hit it.


Faith is just wishful thinking. The dice are in your hands.


And that is the problem. I don’t trust my own rolls and I can’t pass the dice to the next player. I have to shoot. And I don’t know what I am doing. You would think after going through this with Jani, I would have some knowledge, I would feel more confident. And I feel like people expect that of me. They expect that I know what I am doing.

But I don’t. I don’t know what medications might help Bodhi. I feel like I am grasping in the dark because I don’t know what Bodhi has, other than autism. I can’t call it schizophrenia because I am not certain of that. I can’t call it bipolar because I am not certain of that. I don’t know if he is experiencing hallucinations. I don’t know if he hears voices. All I know is he is nervous and afraid so much.


With Jani, I fought. I fought the whole fucking world. I was ready to take on anyone to get her what I felt, what I knew, she needed. And I turned out to be right, most of the time.


I don’t feel that confidence this time. I don’t feel prepared to fight because I don’t know what I am supposed to fight for. I feel lost.


I just want him to stop hurting himself. I just want him to not be afraid all the time. But I don’t know what he needs to get there.


I don’t feel like I have been here before. Maybe last time, with Jani, my anger was my shield to avoid feeling pain.


This time I can’t muster any anger.


There is only the ripping of my heart out every time I see him in the hospital.


There is only the pain.


Copyright Angie Lussier 2013

Note about the photo: I wasn’t aware Angie was taking this picture. This was taken on September 21st, 2013, five days after Bodhi was released from UCLA and three days before he went back. It was a brief moment of peace for him.