It’s been a while, I know. I’ll get to that in a minute. First, some business.
The blog might be a little hard to read. If so, I apologize. I have been tinkering with the website trying to get it ready for the release of January First, and clearly I am no web designer. I always find it funny when a message arrives in my email inbox via this website with the introduction “Please make sure Jani’s parents see this…,” as if Susan and I had “people” who served as gatekeepers. I am not quite sure why this is. Is it because we have been on TV? Let me tell you something about TV. It doesn’t change who you are. It doesn’t change your life. There are no “people” running interference between the readers of this website and me and Susan. Regular readers of the blog know that, but out of the thousands who hit the website every day, most don’t read the blogs. Maybe because it is too hard to find. Maybe they would if the blog was on the front page. But I haven’t figured out how to do that yet.
Second piece of business is that the follow-up to “Born Schizophrenic: January’s Story” that first aired on Discovery Health in May of 2010 is premiering this coming Sunday, June 3rd, at 10pm, on Discovery Fit & Health. Titled “Born Schizophrenic: Jani’s Next Chapter,” it was shot this past January, February, and March. (Here is a link to a preview video: http://health.discovery.com/videos/born-schizophrenic-janis-next-chapter-2-steps-forward-1-step-back.html “Psych Week 2012” on Discovery Fit & Health kicks off at 9pm EST/PST with the original “Born Schizophrenic,” followed by the new “Jani’s Next Chapter” at 10 EST/PST. Susan and I will be conducting a live chat during the premiere at 10pm EST on Discovery Fit & Health’s website http://health.discovery.com/. I will update with more precise information and a link to the live chat on Sunday night, June 3rd, as soon as I have it.
Which transitions quite nicely to where I have been. The first “Born Schizophrenic” had to establish the backstory of how Jani got her diagnosis. The upcoming one didn’t have to do that so the focus was more what life is like with a child with schizophrenia.
In my earliest blogs (which were really just Facebook statuses, and which can still be found at www.januaryfirst.org until June 30th (at which time Apple ends MobileMe, which is where the pre-2010 blogs sit), I wrote, sometime in March of 2009 during Jani’s four month stay at UCLA, that I wanted UCLA to “call a spade a spade,” meaning I wanted them to actually diagnose Jani with schizophrenia.
“Why the hell would you want that?” some may ask, those who do not have a severely mentally child.
The answer is very simple. If someone you love is wasting away, losing weight and energy very rapidly, will it help if the doctors don’t call it cancer? It doesn’t change the symptoms. And for those of who are dealing with or have dealt with cancer, you know that doctors avoid using that word for a long time, too, even though everybody knows damn well what it is.
Those who have criticized me for supposedly “pushing” for the diagnosis of schizophrenia don’t know one thing and forget the other. What they don’t know is that there was no other viable diagnosis. I wasn’t “pushing “ for schizophrenia over another diagnosis. I was “pushing” for schizophrenia over a nameless disease. And what the armchair diagnosticians forget is that the symptoms were not only present but getting worse. It wasn’t the violence. It wasn’t the hallucinations. It was that the hallucinations were TAKING Jani away from us, which isn’t like the rush of terror you feel when you lose your child in a store. That’s pure panic. I’ve been in that place, too. In that place, you have no time to think. You are just running around, screaming your child’s name, praying to God that if he will give you just one more change you will never take your eyeballs off your child again. You run through the store, bargaining with God (and everybody is a believer in those moments).
No, Jani was disappearing before our eyes, slowly. Everyday we saw her for an hour or two but every day there was less and less of that hour or two that she was really “with” us. Getting her to engage with us was getting increasingly difficult. I wouldn’t have cared if she was engaging with anyone. But she wasn’t. She was slipping away, moving in and out of our world like a ghost in a window. Every day we would try to spot a glimpse of her in face, a glimpse of who she had been. And everyday there was less and less there. She was becoming a shell.
Jani was the ghost in the shell.
Parents who have watched their child die in front them know what that is like.
And you still bargain with God.
But God doesn’t answer.
So all you do is think.
You think about what you know. You know what you see before you is not your child. It is something else that is taking over.
I get why some people will still write to me telling me Jani is possessed by spirits. Demons. Because demons are more tangible than an illness. You can imagine grappling with the demon, trying to get your hands around its throat, trying to kill it, trying to drive it back to hell, even if it takes you will it like Father Karras.
“The Power of Christ compels you!”
Those people who want to label Jani (or the Jani they have seen on TV) as possessed want to label her for the same reasons I wanted to label her.
- Because if it a demon/schizophrenia, then the child is innocent. The child is not guilty. The child is not to blame.
- Because it is human nature to want to name our enemy. Because to name it is to take back some power from it. Only when the demon/schizophrenia is named, is dragged into the Light/Light, can it be fought. Only if you know its name can you ever hope to defeat it.
Of course, that is pure bravado. But that is why I “pushed” for the diagnosis of schizophrenia. Show yourself, demon! And let me fight you!
Except that isn’t what actually happened when Jani was finally officially diagnosis. I won’t go into a lot of detail because this is a key part of the book, but I will say that it wasn’t a doctor just sitting down with one day and saying, “Jani has schizophrenia.” For my cancer survivors and readers who have lost someone to cancer, it was more like that moment when the doctor takes you aside, tells you sit down, sits down as well. And pauses. The Pause. For the first time, the doctor has trouble looking you in the eye.
And you know.
You already knew. And you thought you were ready. But now the moment is here and you suddenly don’t want to hear it….
“We have to consider the possibility of….”
“We’ve ruled out everything but….”
That’s how it happens.
And even though you knew in your heart of hearts, even though you’ve been expecting this, your entire life contracts into that single moment. You hear the sound of your own heartbeat in your ears as your blood vessels constrict.
The demon has been named.
But you feel no power.
You feel the opposite. Suddenly, the enemy that you thought you wanted to see rears its ugly head above you and opens its jaws. The Beast is huge. And you look up at it, at the enormity of it, and you realize you cannot beat it. You are nothing next to it.
It is the Giant.
And you are not David.
You are not Hercules.
You are not Odysseus.
You just a dad, a mom, a parent.
You are just human.
And It is not.
And what happens next is the reason doctors are so reluctant to give THE diagnosis, be it cancer or schizophrenia. Because they know what is happening inside you at that moment even before you do.
Suddenly, you can see the future.
Before you couldn’t really see it. The future was just an amorphous set of ideas in your head: Maybe my child will go to Harvard. Maybe my child will be a musical prodigy. Maybe my child will play shortstop for the New York Yankees. Maybe my child will be a movie star. Maybe my child will dance with the Moscow Ballet. Maybe my child will be President of the United States of America.
All of those “maybes” shatter right in front of your eyes to reveal a future you never imagined.
Maybe my child will wind up homeless when I am dead and gone.
Maybe my child will commit some petty crime because of his/her illness and wind up in prison (the modern psychiatric hospitals).
Maybe my child will kill herself.
The first set of “maybes” are your wildest dreams. And if they don’t happen… if your child carves out a very nice life for herself selling insurance in a cubicle…. Oh, well.
The second set of “maybes” are nightmares you didn’t even think could happen. Not to your child. You knew they happened, but not to your child. And they are a hell of lot more likely to happen than your child playing shortstop for the New York Yankees.
That is the agony, the agony I didn’t see coming when I “pushed” for the diagnosis. I didn’t see what could happen.
And what will happen. Because one of those three options above WILL happen.
And the only thing between your child and that future is a couple of pills and you.
You feel up to it?
Because what you now have to do is change, if you can, the outcome of the future.
The odds are stacked against you. The Beast is far more powerful than you. And it wants to drive you away so it can have your child or your loved one all to itself.
You have two choices, and both require going all in. In a Texas Hold ‘Em poker analogy, here is the flop, the turn, and the river: Two aces, two kings, and a queen.
And you are holding a two and four, off suit.
Either you bluff or you fold.
Folding wasn’t an option for me. The stakes were too high. But many do fold, usually the fathers. Unfortunately, once you fold, you can never get back into the game.
So you bluff. But you got nothing. Which means you have to bluff big. All in. Two apartments to keep Bodhi safe and Jani’s stress level down. Dropping the number of classes I teach to the bare minimum to keep our health insurance because stability requires that neither Susan nor myself get too stressed out by taking both kids. Stress is the enemy of stability for someone suffering from a mental illness. Begging complete strangers on the internet for money to keep the roofs over our heads and food on the table. And being willing to be completely fucking honest. By the way, that is how you get donations. You make your life a complete open book. You leave nothing of yourself for yourself. You put everything on the table.
That is what I did three years ago.
And I am still sitting at the table, waiting for the schizophrenia to call my bluff. Sometimes I think it is going to call. Jani is already on the strongest medications available, just to give her some semblance of a life. If it calls, I got nothing left. If it calls I will reach across the table like in the old West films and grab its hands as it tries to take Jani. If it wants to take her, it is going to have to fucking kill me first.
And sometimes, like in the last few months, with Jani doing THREE HOURS with her actual special ed class, with other kids, twice a week, I start to think it’s going to fold.
And then it does something to remind me that it will never fold.
Sometimes, it is the simple act of stepping out onto my balcony to have a smoke and watching the neighborhood kids, kids Jani’s age, riding their scooters and shouting out to each other. The simple act of one boy shouting out another boy’s name. “Ian!” And watching Ian turn around. “What?”
It’s a simple act. Call your name and you respond.
A simple act that Jani struggles to do. Respond to me and Susan? “Do you want mac n’ cheese for dinner?”
“Do you want to visit the Animal Shelter?”
“No.” (Always worrisome when she says “no” to that.
Respond to her teachers?
Delay. I watch her when they ask her a question, a question she once knew like the back of her hand or something she just learned. It doesn’t matter. A pause. The Pause. She moves her legs around. She puts her pencil to the paper and then pulls it away again. She looks around the room. She looks up at the ceiling.
What is happening? Is she trying to remember what she just learned? Is she trying to think through the cacophony in her head? Is she trying not to get distracted by animals and people that surround her and her teacher but her teacher can’t see?
Respond to other kids?
Sometimes she doesn’t even turn around. She is so focused on where she is going that I am not sure she sees them.
In those moments, out on my balcony, watching one kid shout “Hey, Ian!” and seeing Ian turn and yell back, “What?” I get reminded of what Jani may never be able to do. What is an afterthought for those kids is a major effort for Jani.
Jani may never be homeless. She may never wind up in jail. As long as I am alive I will ensure those things don’t happen.
I still get idiots who post, either here or on the Jani Foundation YouTube Channel, “Why did you have another child if you knew something was wrong?” They feel bad for Bodhi. Understandable. For a year and a half, until we got the two apartments, it seemed like we had brought him into hell.
At the time, my answer was that Jani was becoming increasingly isolated. She refused to interact with other kids. We thought it was just her genius. But she didn’t connect with the genius kids either. She was obsessed with Calalini, not computers. Jani was an “eccentric” genius. She couldn’t connect with other kids.
So I decided to try and make one for her.
My answer after Bodhi was born and the violence…. My answer was “We would do the same for Bodhi if it was him instead of Jani.” We would no more abandon her than we would abandon him.
My answer now?
Because I love him.
Because Jani loves him.
And because he and Jani will have each other after Susan and I are dead and gone, asshole.
So take your victim complex because you feel you got shorted by a special needs sibling and get the fuck over yourself.
Yeah, I don’t tell you want to want to hear. I tell you what you have to hear. That’s probably why I haven’t been invited back to speak before the California Hospital Association. That’s probably why I never get invited to speak at fancy celebratory parties thrown by non-profits who raise thousands and millions (NAMI) to fight “stigma.” I am not going to go and pat you on the back and tell you what a great advocacy job you are going over your poached salmon. Because there is no one in the fucking ballroom or restaurant that needs you help. You want to be an advocate? Come with me to houses and apartments all across this country, from Los Angeles to Baltimore, from small towns in Texas to small towns in Montana. From Florida to Maine. From Fort Bragg, North Carolina to Choctaw, Oklahoma. From the suburbs of Los Angeles to the suburbs of Cleveland.
Come with me and see the kids who lash out violently at their parents out of nowhere. Come with me and see kids who try to strangle their younger siblings. Come with me and see parents at the end of their rope. Come with me and see parents wracked with guilt over sending their child to residential because they had to work, they couldn’t afford two apartments, they couldn’t keep their child or children with for the price of one of your events so you can all pat yourselves on the back about how much you care.
No, you don’t. If you care, you go provide respite. If you care, you man the phones when someone is in crisis. If you care, you do what those of us who live it do and get out of your life and into someone else’s.
Otherwise, you are not an advocate. You just like the parties and the free food and pretending you make a difference.
You are, in a word, a “fader,” my term for people who have come into our lives just to leave it just as quickly when things get a bit too “real.”
Over the summer, this blog will be going on the road, a “virtual tour” if you will, leading up to the publish date of January First on August 7th. I am going to show you the faces of severe childhood mental illness. I am also going to show what happens when they grow up. Every week, starting soon, I will introduce a new child, a new family, and share their story (even if I have to change the names and other identifying features). I will show how they are similar to Jani, both in terms of her illness and her humanity, and how they are different.
Above all, I want to show you that Jani is far from unique. She is just the one who got the media attention. If you love Jani, you need to love these kids, too. Because all of them have parents working very hard to change their futures.
And they need your help.
So if you are finished with your salmon, it’s time to go. Bring your checkbook. You want to make a difference? Come with me.
It’s time to stop talking about “change.”
Because talk don’t change a thing.