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