Month: November 2012

Never Been This Far From Home

After “Standing in the Middle,” I have to update on Bodhi. How is he doing?

 

At the time that I wrote “Standing in the Middle,” Bodhi was several weeks into a rapid decline, similar to Jani’s declines… initially slow, with warning signs that I can explain away. That is the way psychosis comes. It comes creeping slowly, so slowly that it is easy to dismiss as a “rough time” at first. We react very differently than we would to signs of a physical infection. As parents, our minds leap to the worst possibilities of strep or meningitis at the first sign of a fever. We rush into urgent care, only to learn that our child probably just has a mild viral infection.

 

In other words, the flu.

 

You know what I am talking about. Every single time your child gets sick, you agonize over how long you should wait before seeking medical attention. The rational part of your mind knows that this will probably pass but there is the other part of you that is terrified that every second you delay is allowing the bacterial or viral invaders to gain strength. You argue with yourself, going back and forth between believing you are overreacting to the fear that THIS will be the one time that you did nothing and your child will die because of it.

 

With mental illness, on the other hand, we do exactly the opposite. We rationalize and rationalize, always waiting for the turnaround. We treat colds like we should treat mental illness and treat mental illness like we should treat colds.

 

During the 2008-2009 period that takes up most of January First, the worst part for me was not Jani’s violence. I’ve seen reader reviews that speculate as to my own mental illness and/or to how those years warped my mind psychologically. These are not difficult questions to answer. Long before Jani was born, I was diagnosed with chronic depression. That remains my only formal diagnosis and the one for which I was initially given medication. My personal psychiatrist has speculated that I might also have a mild form of Asperger’s, as well as potential Bipolar II (because I have never demonstrated prolonged “manic” periods, the hallmark of Bipolar I). These potential diagnoses have never been formalized because there is, so far, no need. Whatever I have, Lexapro treats it well enough that I can function. Diagnosis is a factor of functionality. Psychiatrists will only diagnosis and treat what impairs your ability to function. Not function perfectly. The pills aren’t magic. They become necessary when your ability to function becomes impaired enough that it significantly impacts your quality of life. Psychiatry, like every other branch of medicine, is not designed to make you happy. It is designed to make you functional. After that, finding happiness is up to you.

 

How the experience changed me is also relatively easy to answer. Did the experience of trying to bring Jani back from psychosis warp me? Ah… duh. I tried to kill myself. Of course it warped me. It warped the way I see the rest of the world. It warped the way I see Susan. I undergo medication treatment for anxiety (Klonapin) and therapy for PTSD. I literally jump every time I hear a child scream. I have no doubt that my brain has literally been “re-wired.” I rarely acknowledge to myself how traumatic those experiences in the book were, let alone to those around me. I don’t because no matter how traumatic it was for me, it was worse for Jani. I do my best not to think about what it did to Bodhi, which I justify through the fact that he was too young to remember anything in the first year, that after that we split into the two apartments, and had the situation been reversed we would have done the same for him. These are all excuses. I realize that. But if I think to much about it, if I allow myself to really feel all the guilt I carry, I couldn’t function.

 

Psychology used to view emotional repression as a bad thing, a legacy of Freud’s belief that repressed desires would ultimately explode into what was first called “hysteria,” then “neurosis,” and then psychosis. Hence the embracing of hypnosis in the 60s and 70s in the pursuit of “repressed memories.” The result of this, though, did not improve the ability to function. It destroyed the lives of the supposed abuser(s) and left the patient no better able to be a functional adult.

 

By the 1990s, in the wake of the destruction rendered by childhood “regression” therapies, psychologists began to reconsider the role of “repression.” They realize that repression was not in fact a pathology but a defense mechanism that allowed the patient to function in the face of trauma, similar to how young men and women in the military are able to function in the face of death and destruction from combat.

 

In other words, if it works, don’t destroy it for the myth that emotional knowledge always leads to wholeness (what I call the Good Will Hunting concept of psychology, which nobody outside of Hollywood movies and Psychology 101 classes actually practices). You know: a good cry and a strong bear hug and everything’s better.

 

Except that Good Will Hunting didn’t have a sequel to show that Will would continue to struggle with his emotions for the rest of his life. Damn you, Matt Damon.

 

So, yes, I am warped, if you want to to call it that. I am forever changed by what I experienced.

 

How should be fairly clear.

 

I see psychosis like a parasite, an invader of the mind.

 

Because, like I said, Jani’s violence was not the worst part. The worst part was watching the illness, whether it had the name “schizophrenia” or not, erode who Jani was. The worst part of mental illness, and this is common to ALL mental illnesses, is that they gradually destroy the personality of the victim. You watch your loved ones fade away before your eyes. Who they were. What made them laugh. What they used to love. Everything that makes us unique, you watch slowly disappear. The hardest part is watching your child’s personality eaten away.

 

I watched Jani de-evolve. Regress. Move backward. Slip away. Not grow up. Not change because she was learning and growing but change because external stimuli increasingly didn’t matter to her. The body still looked the same but the personality, the person Jani was, slowly disappeared.

 

Because the mechanism of schizophrenia and its long term outlook are still relatively unknown, at the time of her diagnosis, the dominant theory was that schizophrenia was a neuro-degenerative disease like Alzheimer’s. The belief was that you couldn’t stop the decay. You could only hope to slow it down.

 

Unfortunately, I took this to mean that every psychotic episode literally ate away another part of Jani’s brain, of her personality. I was so terrified because I believed that whatever damage the illness had done could not be reversed.

 

This is what really warped me. My entire existence became about detecting even the slightest hint of psychosis so I could get her into UCLA and stop the degradation of what was left of Jani’s mind. I watched her like a hawk. I shadowed her. I viciously fought back against any person I perceived as endangering Jani’s fragile stability, because anxiety opens the door to psychosis. If you look back at my older blogs from 2010 you will see I had no reluctance to drag people’s names through the mud. I absolutely went overboard. If I perceived that someone was putting Jani at risk of destabilization, I set out to fucking destroy them. I used this blog as a weapon to those who I believed had failed Jani, putting her at risk, and a threat to those in the future not to do the same thing. My blog, and the audience I had, was used as a weapon to turn to public opinion against whomever I perceived as “unfit” to work with children with psychosis.

 

I don’t really know how much damage I did during that time. I know a former therapist of Jani’s resigned. I got an aide at Bodhi’s school fired. I was a one man fucking wrecking ball.

 

In retrospect, there is a fine line between protecting Jani and Bodhi and turning my emotional pain on those who were convenient targets. It’s a hard line to walk.

 

I fluctuated between an unwillingness to fight the battles that needed to be fought and an immovable rage at the rest of the world, which should explain why in January First I can tell Susan her idea is crazy on one page and agree with her three pages later. I turned on a dime, struggling to control my emotional response, driven only by the desire to protect my children from any pain, which in my mind meant protecting them from up and down nature of living in the real world.

 

And Susan was exactly the same. If I ever get the chance to write another book, I will explore our relationship, both its positives and negatives.

 

So what does all this have to do with Bodhi?

 

Well, when you know that you have one child with schizophrenia and you know that statistically siblings of those with schizophrenia have a higher chance of also developing schizophrenia than the general population and, most importantly, you have become wired to see every single minute change in behavior as an early warning sign of psychosis, it became very easy to jump to conclusions as Bodhi began his rapid change in behavior over the last month. It didn’t matter that Bodhi’s change in personality was not like Jani’s change. It didn’t matter that while Jani’s change was persistent and permanent, Bodhi would swing from his normal happy self to being absolutely terrified. It didn’t matter that Jani never showed fear of ANYTHING until after she was on medication (by which I mean fear of things that can harm her). It didn’t matter that Jani progressively lost her attachment to us and showed no fear of being left in the hospital until AFTER the psychosis had begun to stabilize under a successful cocktail of medications. It didn’t matter that my conception of the damage of psychosis being irreversible was in fact wrong, that studies show that with medication, over time the brain actually begins to “fix” itself, restoring eroded brain matter and growing new neural pathways, that the only permanent impact of psychosis is loss of memory during the periods of psychosis. All that mattered was Bodhi was changing and we, and all of his behaviorists, were powerless to stop it.

 

I was already running through in my mind what anti-psychotics other than Risperdal can safely be given to a 45 pound child (answer: not much) when we saw “Dr. Howe” (as I named her in the book), just as we do every week.

 

She took Bodhi’s anxiety very seriously. She could see it, in her office. But she said something to us:

 

“If Jani didn’t have schizophrenia, if you didn’t have that experience, if you were starting from scratch with Bodhi, would you still think it was schizophrenia?”

 

I was stunned.

 

Because I knew the answer.

 

Of course not.

 

I am afraid Bodhi was schizophrenia because Jani has it.

 

“I understand the desire to jump straight to psychosis,” Dr. Howe continued. “Part of me wants to do that too, because of what we know about Jani.” She leaned forward. “But we have to treat each patient as unique. We have to put aside what we know about Jani and consider Bodhi by himself…

 

…and I am not seeing signs of psychosis.”

 

I didn’t believe her, but she has always been right. I still keenly remember flip-flopping back and forth between believing Dr. Howe knew what she was doing with Jani and believing she was an idiot. But in the end, her patience paid off. UCLA was able to make the diagnosis in Jani because they had more than a year of notes and observations from Dr. Howe. Dr. Howe spent all of 2008 trying to figure out what was going on. She never gave up. Not on Jani. And not on us. She understood our desperate desire for an answer but she pushed back as gently as she could against our demands for one.

 

Learning to trust is still one of my issues.

 

With Bodhi, what Dr. Howe focused on was the same thing we were focusing on: Bodhi was getting stuck in these thought loops, crying, throwing himself around, repeating the same thing over and over again despite our reassurances that whatever was bothering him was resolved.

 

When a person gets locked into a repeating thought that they cannot break out of, that is a thought disorder, and thought disorder is one of the “positive symptoms” of schizophrenia.

 

Except that schizophrenia is not the only mental illness that has thought disorders.

 

In schizophrenia, during psychosis, thinking operates independent from reality. It is the thoughts themselves that make no sense.

 

Bodhi’s thoughts made sense. He was afraid of Susan leaving, even just for a few seconds. What didn’t make sense was that he would keep repeating “Where did Mommy go?” in terror even after Susan was back and actually holding him. What didn’t make sense, what was “disordered,” was that Bodhi was continuing to focus on an event that was already over, unable to break free. It was as if his brain couldn’t catch up with reality.

 

There is, it turns out, another mental illness that does that.

 

Obsessive-compulsive disorder.

 

Do you remember how I reacted in January First when Susan first brought up schizophrenia? Do you remember what I thought of schizophrenia? I thought schizophrenia was what those people on the street corner arguing with thin air had. And they do, but the point is that that was my only conception of schizophrenia. I had no knowledge of the nuances of the illness.

 

Likewise, my conception of OCD was the people who have to wash their hands 270 times a day because they are terrified of germs or who have to check 40 times that the front door is actually locked.

 

Ah, but that is only the “compulsive” part in OCD. And just like no two people with schizophrenia present exactly the same symptoms, no two people with OCD present exactly the same symptoms.

 

Our friend Ruben, upon hearing what we were going through with Bodhi, directed us to the ending of the Howard Hughes biopic, The Aviator, staring Leonardo Di Caprio.

 

“Jets are the way of the future,” Howard says after successfully getting the Hercules (better known as “The Spruce Goose”) to fly. “Jets are the way of the future.” Then you see something in his face change. “Way of the future,” he repeats. “Way of the future. Way of the future. Way of the future. Way of the future.” And he keeps going, unable to break out of this thought loop.

[video: 100×100]

Everybody knows about Hughes’ odd behavior, but generally the focus is on his compulsive qualities (storing the jars of urine). The Aviator, in that final scene, shows the thought loops that can occur with OCD.

 

What Dr. Howe was seeing in Bodhi was not psychosis. He couldn’t break free from a disturbing thought, whatever that thought might happen to be in that moment.

 

Did she diagnosis him with OCD? No. His diagnosis remains autism. But she prescribed Prozac.

 

Prozac? Shit, two blogs ago I railed against the prescribing of Prozac for PSYCHOSIS in the UK. Prozac is an SSRI. An SSRI drove Jani deeper into psychosis, making her literally climb the walls. SSRIs carry a “black box warning” for minors due to increased risk of suicidal ideation.

 

But Bodhi has not shown any suicidal ideation. He is not a risk taker. Reluctantly, I agreed to try it, telling myself that Bodhi was not Jani.

 

That was two weeks ago.

 

Bodhi improved almost immediately, although Dr Howe warned us of the “honeymoon” period with new drugs. So far, the Prozac is working. Bodhi no longer spends every single waking moment in a perpetual terror. He still gets upset when Susan leaves the room but I and his behaviorists can help him through it. He is making progress again with his ABA therapy.

 

But most importantly, his personality is back. He is sweet, playful, and slightly mischievous little boy he was. He is talking again. Communicating.

 

Will it last? I don’t know.

 

What about Jani? Jani is struggling a bit right now. But it isn’t the psychosis, at least not completely. Jani is ten now. She is growing up.

 

Remember how I said that once psychosis is under treatment, the brain rebuilds? Well, what that means is that emotional, cognitive, and psychological development restarts. It picks up where it left off. Psychosis started taking Jani at three. She was seven by the time she began to stabilize. Full stabilization took another two years. So at minimum, Jani lost three whole years of her life. The memories are gone, which is hard, but it also stopped her development cold.

 

Now she is on the verge of puberty. In girls, hormones begin to cycle up to two years before the first period. Adolescence is creeping in at the same speed the psychosis used to creep in, which is what usually allows me to ignore it.

 

But adolescence is coming anyway. And adolescence is the time for all of us when we all have a little disordered thinking, a little strange behavior. Personalities can radically change. Basically, it is like schizophrenia but without the hallucinations.

 

And then Jani is still catching up on those lost years. Dr. Howe and Jani’s therapist point out to me behaviors in Jani that are commonly seen in five and six year olds. Social problems that in most kids are resolved by now Jani is still dealing with. So what I am always terrified is a sign of psychosis is actually multiple developmental stages happening all at the same time, as Jani ping-pongs from about five years old to pre-teen.

 

So where does that leave me, the guardian against psychosis? Well, it is still there, competing with the other changes going on with Jani, only this time those other changes have a fair shot. I now have to accept that psychosis is now just a single facet of Jani’s life… not something that completely defines her.

 

Jani and Bodhi are learning to deal with the rest of the world. They have issues, but they are still out there.

 

I know I have to do the same thing.

 

Because my emotional development stopped too.

 

Things aren’t going to change overnight. I can’t just suddenly stop, particularly when I know the psychosis is still out there. I still can’t really leave Jani alone. I still don’t feel comfortable working outside of our apartment where I can do my teaching online at night.

 

I will be completely honest with you.

 

I am terrified.

 

Because I now know there actually IS another life after schizophrenia. I wasn’t prepared for that. I didn’t think there was anything on the other side of this mountain.

 

But there is.

 

We have reached “the undiscovered country.” The future.

 

And just like Jani and Bodhi, I have to figure out how to live in it.

 

[video: 100×100]

 

Update: We will not be able to make December rent without help. Any donations via Paypal to donations@janisjourney.org.

A Thanksgiving Memory (Books for Better Living Guest Post)

Books for Better Living asked me to write another guest post for them and I was thrilled to oblige. The post was supposed to be on a “Thanksgiving Memory.” What I wrote was taken from one of the deleted scenes from January First. It is not quite a happy memory and it’s not quite a bad one, either. http://www.booksforbetterliving.com/2012/11/a-thanksgiving-memory-michael-schofield/

Standing in the Middle

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.

 

Bodhi.

 

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:

 

  1. 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.

 

  1. 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.

 

What?!!!

 

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.

 

  1. 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.

 

For now…

 

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?

 

“Psychosis.”

 

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?”

 

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.

 

[video:

100×100]