If you are a long time reader of this blog, you have probably noticed I rarely write blogs about my own family anymore. My reasons for that are complicated. The easiest explanation is that this is no longer “Jani’s Journey” (the old website). This is the Jani Foundation, a public charity that primarily provides free social events to “emotionally disturbed” public school children and their families in the Santa Clarita Valley, north of Los Angeles. By definition, a public charity belongs to the public which it serves, so talking about Jani doesn’t seem right when she is only one of about 35 kids we currently serve (budget and manpower limitations). Also, for Susan and I, it was always the same goal: to bring attention to the plight of severely mentally ill children. We hoped that interest in Jani would bring people to that cause. All the media we have done as been as a means to that purpose, never about our own situation, which is why I tend to roll my eyes at emails from people hearing “our” story for the first time and suggesting some “miracle cure.” However well-intentioned they may be, WE are not looking for help for ourselves. We haven’t been for a long time. So I stopped writing about Jani in an effort to separate our story from the larger issue of childhood severe mental illness.
Of course, the downside to that is that it leads some people to operate on information years old now and make claims that Jani is not doing any better. Jani has, for lack of a better word, “recovered.” I hate that word because it implies that her schizophrenia is gone. It is not. But it is no longer the defining force in Jani’s life. The defining force in Jani’s life now is impending adolescence. That… or Lorde, the 16 year old New Zealand singer. Or Blink-182. Take your pick. Jani goes to school for pretty much the entire day now (we convinced her to stay longer because the other kids in her ED class were getting upset that she was leaving early). Considering that she spent three years in “home/hospital” where she would go to school only after other kids had left and work one on one with a teacher, this is mind-boggling. She has friends in our apartment complex. She prefers them to her hallucination friends now. She begs me to go to the pool when she sees other kids down there.
I got to be honest. I can almost forget that she has schizophrenia. The events of January First seem so far removed now that it is almost like it was another life, just like that time period seemed another life removed from the one before that. She is not who she was before the acute period of heavy psychosis. People ask me sometimes if she can still “do” the intellectual things she did in her early childhood. I don’t know. I know she is smart enough to get by but I am not quizzing her like I did back in the old days. That Michael, who had hopes of Ivy League and the Nobel Prize for his daughter, is gone. Dead. Replaced by this current Michael who is just thrilled to have Jani be alive and happy and getting more and more functional everyday.
Her improvement is attributed to finding the right combination of medications, the efforts we made to reduce her stress level, time and getting older, and Jani’s indefatigable spirit.
But if I wrote all that, you would think the story is over and the story is never over. Jani still has to live the rest of her live with this disease, and we must ensure the survival and happiness of all kids like her, which is what the Jani Foundation attempts to do.
But that isn’t the only reason I don’t write that much about our family anymore. Part of is the simple fact that I don’t necessarily want you, the general public, to know everything anymore. I wasn’t quite sure why that was.
Until last night.
I have fresh scars. Fresh wounds. For the first time in years. Not from Jani, though. The scratches and bruises that I got from Jani when she was acutely sick have long since healed. And the psychological scars? That is what you read in January First and reason why some readers don’t like me very much. What you read in the book is me ripping apart at the seams as my daughter slipped into something I couldn’t defeat and lashing out at everyone around me. I bared my soul in that book.
Since I wrote the blog “Bodhi Went (Bury the Lie),” Bodhi has returned to the hospital two more times. I just didn’t tell you about it. Our closest friends knew (which is why I am very careful about who I add to my private Facebook page-don’t go looking for it. You won’t find it and even if you do, I won’t add you if I don’t know you personally). But I didn’t want to tell the world.
It’s not because of the tiny peanut gallery that stalks my every word on the internet and would claim, as they do, that we are trying to extend our “fifteen minutes” with yet another mentally ill child. I could give a rat’s ass about that. They can’t have it both ways anyway. Either Jani’s illness was caused by our parenting and if that is the case she shouldn’t be better and we wouldn’t “need” Bodhi to be sick or we’re not any different from other parents and Jani is better and they have to admit that we are a contributing factor. That sentence doesn’t make any sense. Neither do they. It’s my attempt to rationalize with people who need psychiatric help. Anyway, screw them. It’s not about them and I don’t care what they think. One of these days they will realize that nothing they do affects my life and the life of my family.
That was a waste of a paragraph.
The point is I am not claiming Bodhi has schizophrenia. I don’t know what the fuck he has because he lacks Jani’s verbal abilities. He probably is autistic. I don’t really care. Diagnosis doesn’t mean anything in modern child psychiatry. It’s the symptoms. You try to treat the symptoms.
And Bodhi’s symptoms are not like Jani’s. He doesn’t fly into rages. He throws himself around like somebody is jamming his body with a cattle prod. He is violent, but not like Jani. He is violent like he is literally on fire. The struggle is always to protect his head from the floor and the walls. He gets bruises everyday, self-inflicted. HE, and not Jani, is the reason why the downstairs neighbors complain about the noise in our apartment. He screams like he is on fire. But the fire is in his head. Only sleep, and sometimes, if he can let us, holding him bring him relief. From the moment he wakes up until the moment he finally falls asleep, he is doing constant battle with something inside his head. His ABA behaviorists can’t even work with him anymore. All they can do is try to keep him safe. It doesn’t change at school. Discussions have begun about transferring him from autism special day class to ED, “emotionally disturbed,” the same program Jani is in, only because the staff there is better trained in restraining a child for their own safety.
Three times this year Bodhi has gone to the hospital, always for the same issue: self-harm.
And he is getting worse.
He went back a week ago. Yesterday, Thursday, he was released. He was released so he could go to UCLA’s Autism Research Clinic. He was released at 12:45pm. The appointment at the clinic was at 1pm. Distance from the hospital to the clinic: less than 1000 yards.
We arrived at the UCLA Ronald Reagan Medical Center at 12:45. Susan went to pick up Bodhi from inpatient while Jani and I went to the Clinic to sign in for the appointment.
At 1:05, I see Susan and Bodhi coming in through the sliding doors, Susan holding Bodhi’s hand and the inpatient social worker holding his bags of belongings. She wishes us well and leaves. Bodhi seems fine, although he does want to go home. We tell him we will go home as soon as our appointment is done at the clinic, which the inpatient doctors wanted.
1:06pm: I lead Bodhi inside the clinic waiting room, which is very nice, filled with toys and books. The doctor is not yet ready.
1:07pm: Bodhi throws himself on the floor, screaming. I go down with him, cupping my hand under the back of his head to protect it.
At that point, the chronology gets a bit fuzzy. Bodhi is going into what I think is another of his usual fits. As soon as the doctor comes, he will calm down. I think he can be distracted. I try to show him the toys. I pick him up.
He tries to torpedo out of my arms, like a back flip into a pool like they have in Olympic Diving. I have him. I hear Susan tell me that they (the inpatient staff) had had to give him a PRN of Thorazine that morning.
I pull Bodhi’s head back up and scream in pain as he sinks his teeth into my left shoulder. I can’t see it but I know it’s bad. He’s bitten me before in these states but not like this. This feels deep. Susan gently pulls his head back. We go to the floor.
Bodhi is thrashing around in my arms and I am trying to keep his head safe from him hitting it on the floor. I do this by holding him to me but that exposes me again to his bites. I cry out again as this time he bites into my left arm. I know it’s not malicious. I know it is like someone biting down something as a reflex. But it still hurts.
The receptionist tells me that the doctor is coming. A few minutes earlier, I was nice and polite, but now, for the first time in years, since the events of January First, I revert to that asshole you read in the book who you didn’t like.
“By the time the doctor gets here, he’ll be fucking dead!” I cry out over Bodhi’s screaming, to no one in particular. Do I need to explain why I become an asshole in those moments? My child is in a state where he is unable to stop hurting himself and the only thing between him and him getting seriously hurt is me and I am losing control. I am not enough. I am rendered powerless against whatever is going on with Bodhi, just like I was with Jani, so I lash out. What I really want is to beg for help but I have become so used to people just sitting there watching that I am unable to cry out that I need help to anyone but Susan anymore because I know she will take action.
The doctor comes. We know him. He treated Jani long ago. He is a good guy. He tries to calm Bodhi to no avail. I am yelling that Bodhi needs to go back to the unit (inpatient), that he never should have been released. The doctor agrees. They can’t see him in this state. He pages the head of child psychiatry.
Susan screams in horror. I look down at Bodhi in arms, realizing that he has stopped thrashing around. He is biting down on his own fingers. Hard. Really hard. His teeth are clenched and his jaw is quivering. I can see the skin around his hands turning red, then purple.
We get his hands free from his mouth. He has deep purple indentations on his fingers. He has bitten to the bone. Susan screams again that he is bleeding. From his fingers? No, his mouth. He appears to have bitten his own lip. And his gums are bleeding from the friction against his own fingers.
From then on, I am only vaguely aware of what is happening around me as I try to keep Bodhi’s hands from his mouth by holding them (which means my hands are repeatedly bitten) and trying to protect his head. Another doctor joins in. And another. Gradually every doctor in the clinic is there, all trying to protect Bodhi from himself or calling for help. UCLA Health Security arrive. One takes over holding Bodhi’s legs while the other calls for an ambulance.
The original doctor writes a 5150 hold for Bodhi to get him back onto the inpatient unit, although we will have to go through the ER. But we can’t get him to the ER. The ER is a 1000 yard walk over concrete. We will never make it without risking Bodhi catapulting his head into that concrete.
One of the doctors calls 911.
The clinic is closed and all patients are told to wait outside.
UCLA Police arrive and just look in at me, Susan, the doctors, and Security struggling with Bodhi. I hear that paramedics won’t come because “it isn’t a medical emergency.” I scream that it is a medical emergency. I can feel Bodhi’s heart racing. His breathing is fast and shallow. I tell them that if EMTs don’t come soon, it will be a medical emergency.
UCLA has their own EMTs but they take forever.
At some point, Bodhi begins to wind down. Maybe that thorazine he had hours earlier is working. He says he wants to go to the bathroom. I take him. Security comes with me. He says he has to make a poopy. I help him onto to the toilet. He sits for a few minutes. I start to relax. Then he throws his head back, his head missing the flush bar of the toilet by a hair. Literally. It brushed his head. Had he hit it, he would have had a serious head injury.
We get him back into the clinic. He is ramping up again. I have been bitten in several places but I have no time to think about it. Just dull pain. He is back to trying to bite his fingers. He may not be trying to actually bite them off but he is biting with such force.
Another doctor brings out a heavy blanket just as the EMTs finally arrive. We wrap him up, him still on top of me, to pin his arms. I go onto the gurney and they strap me down with Bodhi on top of me.
He is calming down.
We get outside and there are thee ambulances, one UCLA EMT and two LA City Fire. Now they are treating this like a medical emergency and it only took one hour and forty minutes.
I know because I ask the EMT what time it is.
If Bodhi had been having a medical emergency, they would have been there for him in three minutes. But because this was a psych emergency, it took more than 90.
The autism doctor has to come with us because he signed the 5150 hold.
It is a five minute drive back to the ER.
I send Susan and Jani home. We could be in the ER for hours and Jani can’t do that. I tell Susan I will get a cab home.
Bodhi falls asleep. I check my wounds. They are bad. The nurses want me to check in but I won’t because I would have to leave Bodhi. Bodhi wakes up again late afternoon. He is given thorazine as a preventative measure. It doesn’t work. He eats a little then becomes agitated again. He hits his head on the side of the gurney. I am alone. I call for nurses. Eventually it takes four of us while another calls to see why it is taking so long to get him upstairs to the unit.
They can’t transport him. Bodhi is so bad he can not be safely transported upstairs.
I have been at this for hours. I need a break but I need to know Bodhi will be safe. The nurses offer to put him in restraints. I refuse. I would rather hold him.
Two hours after the thorazine, it finally begins to kick in and he calms down enough for transport to the Unit.
He has urinated on himself and needs a bath but I am a little leery about doing that, given what happened the last time I bathed one of my children in a hospital (read the book). He is calming down. I get his bed down on the floor. I am reluctant to leave him to do the admission paperwork with the nurse, but I am spent. I have no choice anymore. I can’t keep him safe and I am physically and emotionally drained.
The only thing I remember about the admission was when the nurse asked me what my goal was “for this admission.”
“For him to not bite off his fingers,” was my answer.
It is after 9pm when I get back outside the hospital. Dark. I have no way home. I call Susan. She offers to come get me with Jani but I don’t want to disturb Jani’s routine. She is going to bed. She tells me she has emailed the producers of the “Born Schizophrenic” series because they emailed earlier in the day, interested in discussing another special for next year’s “Psych Week” on Discovery Health. She told them what happened and said they should come down. I call them, hoping one of them can give me a ride home.
Which is why “fame” means shit to me.
I call my best friend, John, hoping he is not already asleep. He works with me at CSUN. We were TAs together. I hate to drag him out knowing that he taught a full load of courses today but I have no other choice. He doesn’t answer the first time but he has told me that if he doesn’t answer and it is an emergency to keep calling. I call again. He answers. I ask him to come get me. He does so without hesitation, even though it is a hell of a drive for him.
This is not the first time he has come to get me. He came when Jani went to Loma Linda over five years ago. He came the first night Jani ever went into UCLA. I had to leave him out of the book because I was up against a hard word count from Random House and I didn’t have the time to introduce him as a “character” but he was there. On page 290 of the paperback I write “Thank you from the bottom of my heart to my friend John Gides. John came the night Jani went into UCLA and I would not have made it without him.” That’s one of the greatest understatements I have ever made.
Thursday night was the third time John came and the third time his presence saved me from breaking to pieces in a Los Angeles night.
If you have never been to Los Angeles or have never bothered to look up while you were here, you don’t know what the sky looks like here at night. There are no stars. The marine layer rolls in off the cold Pacific and the sodium lights of the City reflect of the sky, giving it this sickly orange color. It reminds me of death. I suppose that is why in that sky I see the desperation that is people of Los Angeles. All the people who came here because of a dream and watched that dream die. It’s all there in the night in this City, the desperation and loneliness of millions of people, sending their hopes and dreams and pain up into the night and it reflecting off the marine layer and back down amongst the freeways and the neighborhoods of Los Angeles.
You do not want to be alone under that sky. Being alone under that sky will eventually kill you. The homeless here, and there are thousands, do not have to deal with cold weather, but they do have to live out there under that dead sky.
John saves me by not asking me to talk about what everybody wants me to talk about. We talk about the insignificant stuff. We complain about annoying students we’ve had and what it would be like to teach at a small liberal arts school instead of a giant state university, what I refer to as our Wonder Boys fantasy (read Michael Chabon). For lecturers, Wonder Boys is our fantasy of what we thought being college instructors would be like (Ivy walls, comfy offices, faculty lounges, students who actually know your name and you know theirs).
But it was on the ride home on the 405, looking out the window at the Valley streaking past us and that damn Los Angeles night sky, that I realized why I hadn’t told you about Bodhi’s hospitalizations after the first one and why I still don’t want to tell you and why you shouldn’t expect this blog to turn into updates on Bodhi.
Because this is my pain. My fucking pain. It’s mine.