Saint Peter Won’t Call My Name

It feels like 2008 all over again.

 

2008 doesn’t have a specific name in our family, mostly because we don’t like to think about it. It could be the year of violence, the year of darkness, the year of confusion, the year of my apathy. If you have read January First, the seeds of what I do in the climax of the book, which occurs in June 2009, actually began in early 2008.

 

It was a bad year.

 

It was also the first full year of Bodhi’s life.

 

It was the sixth year of Jani’s life and the onset of the worst of her symptoms, or what we would later realize were her symptoms.

 

It was the year of Jani’s first and second hospitalizations, with the first and second coming four days apart.

 

2013 is the sixth full year of Bodhi’s life and has been the year of his first, second, third, fourth, and fifth hospitalizations, with three through five ranging in distance from a few hours to six days of each other.

 

What it feels like right now is the period of April through June of 2008. Jani had just come through two hospitalizations and was not significantly better. There was no agreement about her diagnosis. There were symptoms, but no real consensus on what was causing them.

 

Just like Bodhi today.

 

In April of 2008 Jani was released from Loma Linda Behavioral Health Center, her medication largely unchanged, and the direction to us to simply, in essence, “deal with it.”

 

How I “dealt” with it then was to give no quarter. Jani just needed a “firmer hand,” a father, not a friend (an assessment some readers of January First still appear to have). In other words, she was a “brat” then, as far as Loma Linda was concerned. So for the slightest infraction, I would drag her into her room for a “timeout” and lock the door.

 

The signs of what Jani actually had were on the wall. Literally. She wrote the names of her “imaginary friends” on the walls of her room. We moved out of that apartment in May 2009, moving into two separate apartments to keep both children with us, but I know those names are still on that wall. I was unable to scrub them off so I know they are still there, buried under subsequent layers of paint. Whoever sleeps in that room now has no idea that behind those walls are the rantings of psychosis.

 

Now, I am dragging (figuratively, because that is what it feels like) Bodhi into his room for time outs. Of course, this time there is no lock and Bodhi is not left alone. Susan or myself, and usually both of us, are in there with him.

 

We do it because he is throwing things. He cannot stop. He cannot control his own body. He will open the door to the balcony before I can cross the room to stop him, go out and throw one of his cars over the side onto the street below. Then he will cry that he threw it and want it back. I will bring him back in, while he is screaming that he wants his car back, and lock the door. Not that that stops him. And no, child safety locks don’t work. Let me tell you something about child safety locks. They only work for kids who aren’t sufficiently motivated and therefore don’t need them in the first place. Sheer strength and willpower will defeat any child safety lock.

 

But I digress.

 

I try to get outside to get his car before it is crushed by a real car. Sometimes, I get lucky. Tonight I didn’t. His toy van from the movie Cars looked like it had been squeezed between oncoming freight trains. I threw it away before he could see it. He would be devastated.

 

Jani did the same thing in 2008, destroying the things she loved and then being devastated when she succeeded.

 

The idea behind getting him into his room is to get him into a smaller space where we can attempt to control his body. Only in there, with fewer distractions, can we try get him out of the state that he has entered.

 

By the way, we have no idea what sets him off, just like we had no idea what set Jani off in 2008. It is like what Bodhi (or Jani in 2008) wants and what his body will do are two different things. Like there is, in those moments, someone else pulling the strings, driving the muscles.

 

Once it starts, there is no stopping it. Commands do nothing. Positive reinforcement. Nothing. We try to get him to count to one hundred.

 

“One, two, three, four…” Bodhi races through the numbers, slurring them, “five, six, seven, eight, nine, AAAHHHHHHHHHHH!” A primal scream and he throws his head back. Luckily, he is on his bed. Or primal scream and he tries to bite his hands. We keep holding him and continue to count through it. Bodhi rejoins the count. “Forty, forty-one, forty-two, forty-three, forty-four, AAAAAHHHHHH!” I am holding his wrists so he can’t get his hands to his mouth so he bites his shoulder. If we are lucky, he mostly gets the sleeves of his shirt. I gently pull the arm being bitten in one direction while gently pulling his other arm in the opposite direction, which forces his head away from his shoulders. Then he bites my hand. Hard.

 

Here is a lesson should you ever be bitten by anything. Don’t pull. I know your instinct will be to recoil but if you do that only increases the damage. Jaws are pretty strong. The best thing to do is to wait until whatever that is biting you lets go. This prevents tearing of the flesh.

 

Of course, this means you have to fight your instincts and take the pain.

 

Do I scream?

 

You bet.

 

Human teeth biting down at full pressure hurt like hell. Of course I scream.

 

However, once he has successfully bitten down on flesh, either his own or someone else, the biting seems to abate. It is like the compulsion has been relieved. The itch has been scratched.

 

The sad thing, though, is feeling physical pain from being bitten by Bodhi is the only time I feel fully alive.

 

Just like in 2008 when Jani used to hit or kick me.

 

The sharp sensation, the stinging wound after, reminds me that blood still rushes through my veins, that my heart still beats.

 

The only thing that comes close to that is during a Jani Foundation social event when I see mentally ill kids, many with the kind of weak diagnosis Bodhi has, playing together and having a blast. That’s more healthy, I know.

 

What makes this like 2008 is that the rest of the time, I feel numb. Dead inside. This is because my entire life is survival again. Get Bodhi through the day to the night and then do it all over again and all over again and all over again until he becomes so bad he has to go back to the hospital.

 

That is what I felt in 2008. Survive. Get Jani to the end of the day. A few hours down. Then do it all over again. And I believed it would be that way forever.

 

And when you think that is going to be your life for the foreseeable future, you start to die inside. You stop talking to people because you are too damn tired to explain everything you are going through. You stop sharing your feelings because you have no feelings to share. Life becomes all about functioning. What do you need to function, not just for you but for everybody you are responsible for? What does it take to get from one moment to next, hour to hour? That is as far as you can let yourself think ahead. You have to be safe to plan for the future. Maslow’s Hierarchy of Basic Needs stuff. The future has no meaning because you can only think about surviving.

The psychological toll of that is great. Dullness is my most common emotion. Dullness. The gray depression, not the black depression.

 

Eventually, you have no idea what would make you happy anymore.

 

Of course, this is my second time through this so I know more than I did last time. Last time I was in this place, I went looking outside my family for happiness. This time, I already know the grass isn’t any greener on the other side.

 

Not that I would want to go. I don’t have the energy to climb the fence anyway.

 

But that’s not really why I don’t want to go. I don’t want to go because as much as I hate this period, the period between the beginning of treatment and the final diagnosis, the period of uncertainty, of not allowing myself to fully believe that Bodhi is experiencing exactly what his older sister went through, there is a difference between 2008 and 2013.

 

Part of it is Bodhi still doesn’t really talk. His is not conversational so they can’t pin the “brat” tag on him like they did with Jani. This time, he has an older sibling with a severe mental illness. He’s had the early intervention of therapists and behaviorists that Jani never got because she never got an autism diagnosis. He has only ever been hospitalized at UCLA, with doctors and nurses who already knew him because they knew Jani and knew our family, unlike Jani who had to suffer through BHC Alhambra and Loma Linda.

 

He has an older sister who taught his parents a lot. She taught us how to fight for her, how to advocate for her. In 2008, I was acting against my better instincts, doing what others told me to do. Not this time. This time I am trusting my wife, who is the physical embodiment of my conscious. Or I am trying to.

 

Yes, Susan is my conscious.

 

Why do you think I portray her the way I do in the book? Why do you think I got so angry with her?

 

Don’t you ever get angry at the part of yourself that tells you the truth even though you don’t want to hear it?

 

Yes, Bodhi, and us, are on the same journey again. But at least this time we know the landmarks.

 

And what gets me out of the gray depression this time is that I know there will be a future.

 

Because I have already been there.

 

I already know what will happen. I already know this set of hospitalizations is just the beginning for Bodhi, that more will come. I already know that the doctors will beat around the bush on a diagnosis until a true crisis happens. Yes, that scares the shit out of me. But to cross that final threshold, there has to be a trigger, the end of the end, or at the beginning of the end so that the end can come. It is the starting of the process of hitting the rock bottom. From December 2007, when I was forced to accept that there was something wrong with Jani, to January 2009, when Jani ran out of her first grade classroom and tried to throw herself through doors and windows, we were falling, as a family, falling, with no bottom in sight. In January 2009, the bottom came into sight. It would take another three months to actually see the bottom and to get out it? That’s a whole other book.

 

So that is what I am waiting for now.

 

The bottom to come into sight. I have to have faith that the bottom will not kill Bodhi. I don’t think so because he is young and he got help even earlier and younger than Jani did. He started treatment earlier. He is already in special ed. He is already doing home hospital with the same teacher Jani had. He has supports now she would not get for years.

 

Of course, this may mean that it will take longer for Bodhi to hit the bottom.

 

But I still feel it is out there and will be until Bodhi is on the right medications. What is on right now is just slowing the fall, not stopping it.

 

But we did it once, we can do it again. We turned the tide once. I am not telling you this for your benefit. I’m saying it for me. Remember, I am not really talking to people right now. I have pulled back from my friends. I am withdrawn. This whole blog is my peptalk to me. I know that giving up is not an option. I brought these children into the world. Their happiness is ultimately my responsibility. But the apathy. That is what I have to fight against. The gray depression.

 

The bottom is coming. I don’t know when we will hit it but I know it is down there somewhere.

 

I look forward to hitting it.

 

Because then we can start coming up.

 

And life can begin again.

 

Post-script: The Jani Foundation still has a responsibility to provide free social events for the ED “emotionally disturbed” children of the Santa Clarita Valley. We have done three events so far and next Wednesday is our biggest event this year, our “Halloween Rocks!” costume/dance party with live DJ at the Sunset Pointe Room between the Residence and Fairfield Inns in Valencia. The Jani Foundation desperately needs your help to continue to offer these events. We are offering Jani Foundation “Socialization over Isolation” t-shirts for sale here on eBay. We have only a limited number made and will not be making more. Get yours today and the cost, minus postage, goes to pay for our social events. 

Also, the Holiday Season is coming up. Please consider the Jani Foundation for your Holiday Giving. Thank you.

[There is a video that cannot be displayed in this feed.