I hate beginnings.
It’s always been the hardest part of my writing. A million things have happened. So where do I start? “Start at the beginning.” Okay, but where’s the beginning?
The published version of January First (not including the prologue) starts on Jani’s fourth birthday. However, previous drafts started much earlier in time. The very first drafts started before Jani was even born, some as far back as when Susan and I first met. Others started when Susan and I found out she was pregnant with Jani. Others started shortly after her birth in those first hellish months of when she was not sleeping.
Where, exactly, do you begin a story? Because whatever point you begin, there was always something earlier. It’s hard to figure out where it all began.
This has always been a problem with my writing. I start to tell a narrative and I end up going backward, not forward.
With January First, I was contractually obligated to 85,000 words, give or take a thousand. The focus of the story also had to be Jani, not me. That is why the revelation that I shook Jani as an infant in Chapter 30 seems odd. The set up chapter for that is gone. Originally, there was an entire chapter devoted to that, the third chapter of the original draft. Why was it cut? Partly it was to improve the narrative flow. In the original drafts, there was a pretty big jump from Jani’s infancy to the onset of her increasingly odd behavior between 3 and 4. It would have forced the story to jump more than two years between chapters. Second, and I’ll be honest here. There was concern that having such a scene so early in the book would hurt my “likeability.” Which makes me find the reviews that find me unlikeable funny. I was even more unlikeable in earlier drafts.
See, I did it again. I went backward, not forward. The paragraph above has nothing to do with trying to write this blog at all, yet there it is, and it will stay there because I don’t have an editor for my blogs.
Back to the beginning. I suppose the point of the paragraph about what was cut from the book is that in the end I had to start somewhere, and since it was Jani’s story, it had be, if not the beginning of her life, the beginning of its loss, or the loss of what it might have been, what we have all been working for five years to restore. Because after the not sleeping and the constant need for stimulation, Jani was fine. Jani had a very distinct personality. So the beginning of the book was the beginning of Jani unraveling and, by extension, Susan and myself.
I am much better at endings. My two favorite words to write are “The End.” We don’t write like Greek Tragedies. Modern narratives, no matter how awful, have to end with a sense of hope. Very very few writers ever defy that narrative style. You have to give the reader a glimpse of the light at the end of the tunnel. You have to make them feel that even if you are not at the summit yet, you can see it and you know that, one day, you will get there.
And that is not a trick or a lie. As the writer, you have to believe that. If you didn’t, you couldn’t tell the story. Just like the reader, the writer has to feel that s/he has a place to go. You can’t take the reader to hell unless you are going to show them the way out. And you can’t go to hell unless you believe, on some level, that you will come back.
I guess that is my long winded introduction to the point of this blog.
I have to go to hell again.
My response to the question, “How is Bodhi doing?” have ranged from silent to evasive. This may seem odd considering that I have been on TV talking about Jani’s schizophrenia, but if you’ve read the book, you know that me being silent or evasive or deflecting the question is not inconsistent with how I was with Jani. I wrote the book in present tense to show how I thought and felt in the moment with Jani. I guess I didn’t do a very good job of conveying that those aren’t my feelings anymore.
I do get asked if Bodhi has schizophrenia. This is easy to answer. “No.” But think about the question. You are not asking me if I BELIEVE or FEEL or THINK Bodhi has schizophrenia. You are asking me if he has it. No, he has no diagnosis of schizophrenia, so I can say “No” and leave it at that. I’m not lying or being evasive because you just asked me if he has it, which I interpret to mean, “Does he have the diagnosis?” No.
So why does the question keep coming up?
There’s a few reasons:
- Although not conclusively proven, there is a strong suggestion that there is a genetic component to schizophrenia. When it first appears, and because its onset is rather slow, a child with schizophrenia appears to be “patient zero,” which is why the media keeps advertising Jani’s story as “one of the youngest people ever to be diagnosed with schizophrenia.” Although this is not true. It’s only true in the last two decades. It’s new to the media. It is new to psychiatrists who went through med school in the gap between the closure of the state mental hospitals in the 70s and 80s and the last decade. You also have to remember that the birth rate hit in the United States hit its nadir in the mid-1970s, gradually increasing again through the 1980s and 90s as social mores about children and decreasing acceptance/use of abortion changed. The 1970s were the anathema of the “kid-centered” culture that would rise in middle-class America beginning in 1982. Oddly enough, the 2000s have seen a return of the “bad seed” portrayal of children in horror films that we saw in the 1970s and movies tend to represent a culture’s underlying fears.
But there is another reason why your child is not really “patient zero.” You don’t think about mental illness, unless you have been diagnosed with a particular severe kind. What to Expect When You’re Expecting does not have a chapter on possible mental illnesses your child might have. In baby care classes, they teach you how to resuscitate your baby with infant CPR, not what do when your child begins a radical personality change. You think about banking your baby’s cord blood with hope that, God forbid, your child ever develops leukemia, you have stem cells in cold storage. You NEVER EVER think about serious mental illness. You don’t even know what the hell schizophrenia is. Okay, you know that’s probably what the bag lady raving to herself on the street corner has, but you never think about how she got there. You never go back to that woman’s beginning. You never realize that at one point in her life she was normal. You don’t think about the fact that this woman was once a fully functional human being. She is just who she is now. There is no backstory and if it crosses your mind at all, you chalk it up to bad circumstances (abuse, drug addiction, etc).
Of course, growing up you heard whispers about certain family members, the strange aunt or uncle or cousin you never knew. When you ask what happened to them, your parents or grandparents largely brush the question off. Only after your child’s symptoms intensify and you are crying to them on the phone about how you have no idea what is happening to your child, does a family member say, “You know, Uncle Joe used to act like that.”
WHY THE FUCK DIDN’T YOU TELL ME THIS EARLIER??!!!! Is what you want to scream.
And slowly, gradually, you learn the truth: that your families are riddled with mentally ill individuals. Some of them eventually got a diagnosis and got shut away in an institution. Some never got diagnosed but still got shut away in an institution. But because this doesn’t come up in conversation during Thanksgiving, because these distant family members were gone, either to institutions, death, or narcotics and alcohol, before you were born, you never knew. You never knew that your “crazy” great uncle or second cousin really was crazy and, if you press your hazy memoried parents, actually had a diagnosis.
I don’t know if this holds true in cultures that still have extended families but one of the great failures of the Western nuclear family is it destroyed family history. I know everyone in my family who has died of heart failure or cancer. Schizophrenia? Bipolar? Not so much. And those who can answer those questions are either dead, out of touch because we moved to America, or their memory is hazy because the last time they saw their “crazy” or “lunatic” cousin was fifty fucking years ago.
So your child is a puzzle in a family history with most of the puzzle pieces missing.
- But in that hazy history, you learn that the crazy great uncle was the sister of your “odd” grandmother. Why was she odd? Because she would sit the corner and stare at nothing. Oh, and it turns out she was in and out of mental hospitals and received ECT for twenty years.
But I did it too. I spent most of my teens and twenties referring to my mother as “crazy.” It wasn’t until Jani was diagnosed with psychosis that I began to look back and see that maybe my mother chasing after me with a butcher knife when I was twelve because she thought I was her FATHER was more than just her idiosyncrasies. Oh, so that’s what a delusion is. I always wondered how she could be so convinced my father was a mafia hitman.
And once you start looking for it, you see it everywhere. Okay, so maybe that explains why my Uncle Michael, my namesake, was a violent drunk whose wife left with the kids. Maybe that explains why my Uncle David was a raging alcoholic whose wife and kids also left him and whom I would frankly be shocked if he is still alive. Maybe that explains why all my uncles were just a little “off.” They weren’t bad guys. I loved them. They were fun. But as I grew older, I heard increasingly disturbing stories about them. But because we moved to America and my parents divorced only a few years later and my mother broke off all contact with me, I never saw any of them again.
- Every single family that I know that has a child with a serious mental illness and has more than one child has more than one chld with a serious mental illness. Not exactly the same mental illnesses. Not exactly the same symptoms. But if you got one, you’ve likely got another. Some even have three. Some have two with the third one apparently spared.
So why did the producers of “Born Schizophrenic: Jani’s Next Chapter” ask about Bodhi’s mental health? Why did “Mornings” on Channel 9 in Australia mention it?
Is it because of this probability of genetics?
No, not really.
It’s because they see it with their own two eyes. You see four minutes of footage on TV but that four minutes took an entire day to shoot. You see 44 minutes of footage with “Born Schizophrenic: Jani’s Next Chapter” but the shoot took three months. The basic rule is that for every minute of footage, one entire hour is left on the cutting room floor. The “20/20” we did back in 2010? Our segment was maybe 16 minutes total. You want to know how much footage they shot? 1500 hours of video.
My point is that what you see on camera is not what the producers and the film crew saw. You see the footage they chose to use to fit the story they were trying to tell and within their time constraints. You see a fraction of the total footage. There is enough footage on Jani and all of us to fill an entire channel 24 hours a day for at least a few years.
And every time, they have to re-introduce the story, which burns time and why they tend to use the same footage over and over again. And they have to tell the story, hitting the major points, engaging the audience who has never heard of Jani, and tell it coherently and get out in time for the next segment on Khloe Kardashian.
And what is more dramatic: show ten minutes of Bodhi terrified by something we can’t see, desperately trying to tell us something but it makes no sense, repeating the same thing over and over again or show a quick two second clip of Bodhi screaming and pointing out the car window and then ask the father with the schizophrenic daughter if he thinks his son also has schizophrenia?
It doesn’t help that Susan will tell anyone who will listen she thinks Bodhi has schizophrenia.
“Michael, your wife has made it pretty clear she believes Bodhi has schizophrenia. Do you feel the same way?”
“Ah…. Can we talk again about the time I snapped and shook Jani when she wouldn’t sleep?”
I have no problem talking about all the mistakes I have made. I have no problem talking about the shaking. I did it. I own it. Do I think it caused Jani’s illness? No. I have no problem talking about when I was accused of sexual abuse. I actually do talk at length about these things but the media leaves it out because none of that is as interesting as whether Bodhi might have what Jani has.
So what goes through my mind when I am asked that question?
“No, of course not. But I have a history of denial. For every person who criticizes me for ‘pushing’ for a diagnosis of schizophrenia for Jani, there are a hundred more who criticize me for not getting help for Jani sooner, for being so convinced her symptoms were just a product of her genius that I ignored what is plain as day to them in the book.”
“Susan comes off like she is nuts, but she was also right. She always has been. She listened to Jani, really listened to her, long before I did, and she continues to listen to her better today than I do.”
“I know damn well this isn’t ‘mimicking’ because Bodhi is too young to remember Jani at her worst and I don’t buy the Jungian subconscious bullshit that things that happened to you that you don’t remember affect your life. The two apartments, Susan’s idea again, protected Bodhi from Jani until she was relatively stable. That, and I believe kids mimic psychosis about as well as you can get down on your hands and knees and pretend to be a horse well enough that I might actually confuse you with a real horse and try to ride you.”
“I see my son suffering. He is scared. Terrified. Jani was never scared like that. Jani was never scared of anything. So it can’t be the same thing.”
“Bodhi isn’t violent. He will sometimes bite or hit but he is panicked. Jani was never panicked. There was no emotion.”
“But whatever this is is eating away at his personality, just like Jani. The happy Bodhi is disappearing under this all encompassing terror.”
“My son is suffering and I can’t fix it and neither can the medications nor the ABA therapy.”
“I cannot go inside Bodhi’s head and even worse he cannot tell me what he is experiencing. Once again, whatever is going on has made me an outsider. Is that my fault because I pretty much ignored him due to Jani in his early years? No, because he is same way with Susan and Susan never ignored his emotional needs.”
“Something is happening to Bodhi. Something is going wrong. And it is getting worse.”
Editing cuts out my long pause between the question and my answer, which in “Born Schizophrenic: Jani’s Next Chapter” was, “It doesn’t matter. Whatever he has, we’ll deal with it.”
Except that was bravado. That was seven months ago. Bodhi was, I could say then, doing okay.
He’s not doing okay anymore.
So what is the answer to the question, Michael? Do you think Bodhi has schizophenia?
“I don’t know.”
Yes, you do. You just don’t want to admit it because then it makes it real. How long are you going to wait?
“Wait for what? There is a protocol that must be followed. Every child is unique. We can’t just jump to schizophrenia because of his sister.”
That’s not an answer. Several times now you have saved him from opening the oven while it was on. Didn’t Susan’s “crazy” uncle die from an unexplained death related to an oven?
“What the fuck do you want me to say? Is there something wrong? Yes, there is something wrong. But this could still just be autism.”
Just be autism? Since when did autism become better than schizophrenia?
Whatever term makes you feel better. Even if it is autism, how is that better? Bodhi is still isolated from his peers, just like Jani.
“Autism can be treated.”
Oh? Really? How is that ABA therapy working out so far?
“He’s still young and he is not as verbal as Jani.”
Yes, he is. You just don’t want to listen.
“I can’t do this again. Whatever road he is on, it doesn’t lead anywhere good. I can’t do it again. I can’t go back to hell!”
So that’s what it is then.
“Yes! Alright! You happy?! I can’t do it again. I’m older now. I don’t have the energy.”
What did you say to people who wrote on the internet that one day Bodhi will hate you for neglecting him?
What did you say to them?
“I said that if that ever happened, I would tell him had the situation been reversed, I would have done the same for him.”
And now it is.
“No, it isn’t. Jani’s stability is still fragile. Moment by moment. It’s not even good days and bad days. It is good moments and bad moments.”
But she is getting better.
“And I am barely hanging on.”
Bodhi will get better too. You are scared of going back to hell. You’ve already been there once and you and Susan brought everybody back out.
“I can’t do it again.”
You don’t have a choice. You made a promise to Bodhi in the days when Jani was very sick. Now you have to follow through. Now, one more time: Do you believe Bodhi has schizophrenia?
“I can’t answer. I won’t answer.”
So eager to diagnose Jani but you lose your balls with Bodhi. How does the name change anything? That is what you are always saying. You are a fraud. You say the label helps but you refuse to label him.
“I will say what I have said before. Something is very wrong.”
That’s what you said about Jani, too.
“THEY ARE NOT THE SAME.”
But that is what you wanted. You say it in your book. You wanted a child who would “get” Jani.
“But that was before I knew she was mentally ill!”
And who says God doesn’t listen.
“I hate beginnings.”
Everything is a beginning.
Jani at a Halloween party at her school. I have to face facts. She is growing up.