Month: March 2011

A Schizophrenic in Toronto (Subdivisions)

I am often asked what Jani “experiences.” In other words, what is going on inside her head. In fact, it was one of the things my book publisher wanted: to go inside the world of a child with schizophrenia.

 

If that is what my publisher wanted, I failed. In fact, I didn’t really even try.

 

Because I can only speculate, and I am sure my speculation comes nowhere close to the reality. How funny, using the term “reality” in this case. After all, that is the crux of the problem, isn’t it?

 

Reality itself, after all, is far from concrete. I define it two ways. First, reality is that we believe is real because our senses tell us so. For those of us who can see, vision is the dominant sense. The processing of visual images is so complex that it requires three different parts of the brain: occipital lobe (back of the brain), parietal lobe (sides of the brain), and the prefrontal cortex (the front of the brain). We know now that the visual cortex is located in the occipital lobe. The parietal lobe is responsible for spatial awareness, converting visual stimuli to three dimensional images, and “remapping” our visual field when we turn our head or eyes. It is also responsible to integrating visual information with that of other senses (which are primarily located in the parietal lobe). Then the prefrontal cortex must process the information received and make sense of it.

 

Vision alone takes up far more brain processing than the mythical “10%” of the human brain is actually being used (primarily refuted by the fact that if 90% of the brain was non-functional then significant damage could occur without loss of existing abilities. This is most definitely not true. Damage to any part of the brain results in some loss of functioning and ability). During periods of wakefulness, most of the brain is active in processing external stimuli.

 

“Don’t believe everything you see,” is the old saying, but it is hard not to. That’s what the brain is designed to do. The other four senses, touch, smell, hearing, and taste, fill in the gaps left by vision, thereby ensuring our survival.

 

Which, by the way, is the whole purpose of our senses: to ensure our survival.

 

A snakebite is painful.

 

We can smell food.

 

We can hear the sound of running water or the roar of a lion.

 

Millipedes taste bad so we don’t eat them (It turns out they contain small amounts of cyanide).

 

What is “real” is ultimately that which can threaten our survival. That is the most basic definition.

Then there is second reality: the “common reality,” or what we generally agree is real. This is a bit complicated, though. One person could see a tree and walk up and touch the tree, while another nine, for whatever reason, cannot. The nine who cannot see or touch the tree would conclude that the tree is not real, even though it fits the definition of reality for the one who can see it.

 

In the end, common reality allows for social functioning. In order to form civilization, we have to have common reference points for the world around us.

 

So social constructionists would then argue that “reality” is constructed. I doubt it. If a tree falls in the woods and no one is around to hear it, does it make a sound?

 

Of course it does. Objects move air, creating sound waves, and it doesn’t matter if there is a human ear there to detect it or not. This would argue that there is a third “reality” that exists entirely outside of us, which would lend credence to the idea that our reality is not socially constructed but in fact “real.”

 

If you are underneath that falling tree, it is going to kill you whether you believe in it or not.

 

So then, we can argue that hallucinations at least fit the criteria for the first version of “reality.” For those who have them, they can see them, touch them, hear them, smell them, and taste them. And if one can detect them through the senses, particularly when all senses are working together to contribute to the hallucination, they can very much kill.

 

What would you do if you saw a lion running at you? Probably the same thing that a girl might do if she saw a man with red glowing eyes.

 

It’s like when you were a little child. You hated it every time your parents turned off your bedroom light at night. Because you were sure there was something there, in your closet, under your bed. You would scream for your parents and they would tell you nothing is there and that it is just your imagination.

 

Eventually, we got over that fear of the dark because we never saw the monsters we were convinced were there.

 

Now, imagine you did see them. And nobody believes you, not least of all your parents. How long does it take before you stop telling them? It is the conservation of energy principal. You need that energy to fight off the demons. You can’t waste it arguing with people who you know can never see what you see.

 

And you grow up. And still they come for you. And there is no one to save you.

 

Unfortunately, we are talking about the brain. Every brain is different. Despite our “common reality” we also process the world in slightly different ways. Which is why your spouse seems pissed off at you and you have no idea what you did. No human disease will affect two people in precisely the same way. And neither does mental illness.

 

“You are psycho…”

 

What exactly does that mean?

 

Psychosis is a common trope of Hollywood horror films. After all, one of the most iconic films of all time is named Psycho.

 

Janet Leigh, on the run, checks into the Bates Motel to hide out. She strikes up a conversation with the proprietor of the hotel, Norman Bates. Smitten with her, he invites her to dinner. While taking a shower, a shadow of an old woman appears and beheads her (stabs in the original book by Robert Bloch, which he loosely based on the murders of Ed Gein-later to be the influence for “Leatherface” in The Texas Chainsaw Massacre and “Buffalo Bill” in Silence of the Lambs).

 

If you haven’t seen Hitchcock’s immortal film, I am going to ruin the ending for you.

 

The killer is “Mother.”

 

And “Mother” is Norman Bates. Norman has two distinct personalities, his and “Mother,” who he became after he found his mother in bed with a lover and killed her in a fit of jealousy. Horrified by what he had done and needing his mother, his psyche fractured into two personalities.

 

So the movie title is a bit of a misnomer.

 

Is the character of Norman Bates psychotic?

 

Yes, in the sense that he believes his mother to still be alive (thought disorder) and he “hears” her calling to him (auditory hallucination.” The distinct personality of “Mother,” however, is not a characteristic of psychosis. It is closer to “multiple personality disorder,” now called “Disassociative Identity Disorder,” although people with DID typically have far more personalities than just two, and the primary personality is generally aware of the existence of the others, while Norman had no idea he was actually two people.

 

Strangely, most people assume that Norman was the victim of traumatic abuse, when neither the novel nor Hitchcock’s film make any such overt claims. In the sequels Psycho II and Psycho III, we see Norman living in constant fear that his “insanity” will return. In both films, the term “mental illness” is used. In the 1990 made for TV movie “Psycho IV,” in which Norman tells his story, thereby making the film somewhat a prequel to Hitchcock’s original, his wife gets pregnant without his permission and he is terrified he will create another “monster,” the first reference to mental illness being hereditary.

 

Nonetheless, Psycho, which is generally considered to be the first “slasher” film, became the model for psychosis with the general public. People with psychosis were either dangerous killers or repressed “free spirits” like in One Flew Over the Cuckoo’s Nest.

 

Neither are representative of psychosis. The first type of film uses psychosis as a explanation for the antagonist’s murderous desires while the second downplays psychosis. Both are extremes that don’t reflect reality.

 

So back to the question: what are Jani’s experiences like?

 

I could only speculate until October 18th, 2010.

 

We at home, in Bodhi’s apartment, making dinner. The irony is we have two apartments, one for each child, and yet we are almost never at home except to make dinner and prepare for bed. During the day, Jani cannot stay home for more than a few minutes. Any more than that and she starts to hit. When I ask her why, she replies that she is “bored.” You see, boredom, failure to engage the mind, brings 400 the Cat and 80 the Girl That Likes to Jump Off Buildings back, or living numbers that require medical care for severe injuries, or “The Nothings,” (which is the only name Jani will give), apparently flying dogs that circle above her head. When asked how dogs can fly, Jani can offer no explanation.

 

She does not watch TV, although Bodhi does. However, we keep the TV on to the same channel it has been on since Jani was three, Nick Jr. (formally Noggin, a commercial free Nickelodeon channel serving pre-school age children). Jani doesn’t really watch it but likes having it on in the background. I think it is part of her stability, something from her past she can hold on to.

 

On October 18th, 2010, “Dino Dan” premiered on Nick Jr.

 

Nick Jr’s primary purpose is to prepare children for preschool/kindergarten. The shows are educational, so I expected an educational show about dinosaurs. I wasn’t quite sure how such a show would work for preschoolers as it was live-action, unlike other dinosaur shows.  What was Dan going to do? Teach kids about dinosaurs using fossils? No, that couldn’t possibly work. Dan will probably imagine himself in the time of the dinosaurs, where anthropomorphic dinosaurs talk to Dan and tell them about themselves.

 

But no.

 

Dan doesn’t imagine himself in the time of the dinosaurs.

 

Dan lives in suburban Toronto.

 

And the dinosaurs are not anthropomorphic. They are realistically imaged dinosaurs, Jurassic Park dinosaurs, created by computer.

 

And Dan sees them.

 

Not in a book. Not on a computer screen.

 

But walking through Toronto.

 

He’s seen a Brachiosaurus outside his house.

 

Except that Brachiosaurus lived during the late Jurassic Period about 150 million years ago.

 

He’s seen a Tyrannosaurus Rex patrolling his street. During winter. In the snow.

 

Except T. Rex lived more than 65 million years ago during the Cretaceous Period.

 

And a T. Rex never got close to Toronto. During the late Cretaceous Period, the North American continent was divided into two giant islands by a large shallow sea, called the Western Interior Sea, that covered all of the modern Midwest. Toronto would have been located on the eastern island, called Appalachia, while T. Rex fossils have only been found in the Western United States, in the western island paleontologists call “Laramidia.” Unless T. Rex was capable of thousands of miles over open sea it is unlikely one would appear in what is today modern day Ontario.

 

Oh, and the Cretaceous Period was one of the warmer periods in Earth’s history, so none of the dinosaurs on “Dino Dan” ever would have seen snow.

 

Okay, so Dan’s got an active imagination, right?

 

Maybe. But he uses the scientific method of empiric observation. He conducts experiments, which he numbers and keeps a meticulous record of in his “field journal.” For example, he conducted an experiment to test whether T. Rex located its food primary by smell by leaving a hamburger for it in its treehouse. His observations led him to conclude that the T. Rex was primarily a nocturnal scavenger, not the vicious killer we remember from Jurassic Park.

 

And that’s the problem. He is conducting empirical scientific observation on something that not only has been extinct for millions of years but that no one else can see. He makes model use of the scientific method, but how can one observe the behaviors of something that is not really there?

 

Oh. Another thing. The dinosaurs only seem to be around when Dan is not otherwise engaged in some other activity with his friends or family, although they can distract him. He will utter the name of the dinosaur under his breath when he sees it. His friends will call to him to join them and he will tell them “Just a minute” or “Be right there” and proceed to try to gain scientific data from the dinosaur.

 

Dan lives with his mother and his younger brother, Trek (the location of the father is unknown although in one episode Trek did run into Dan’s room to tell him “Dad is on the phone.”

 

But this is Canada. They don’t look down on single mothers there.

 

In one episode, Dan’s mother is discovers that several pairs of her shoes are missing. She is trying to get Dan and Trek ready for bed, but Dan wants “ten more minutes” because he wants to gather data on the weight of a Dromaeosaurus, a small, feathered dinosaur that lived during the Cretaceous. Dan’s mother thinks he has done enough dinosaur studying for one day but Dan is so earnest that she gives in.

 

Trek asks him what he is doing. Dan starts to answer “I’m tracking a…” but Trek finishes his sentence “a dromaeosaurus” for him, nodding his head like he deals with this everyday. Dan’s face lights up. “Trek! How did you know that?” It seems almost like he is thrilled to discover that maybe his brother sees what he sees. The look of disappointment on his face is palpable when Trek tells him “Our rooms are right next to each other. I can hear everything you say.”

 

So apparently Dan talks to himself.

 

Dan wants to get the dromaeosaurus’s weight, so he puts a dog biscuit on the scale in the bathroom. He also pours baby powder all over the scale so he can track it. Hiding in behind the shower curtain, he sees the dromaeosaurus enter, step onto the scale to eat the treat, and then run out. Dan follows the baby powder tracks left behind to a cabinet under the kitchen sink. Opening it, the dromaeosaurus scampers out, startled, leaving behind all of Dan’s mother’s shoes. Dan’s mother sees them and wants to know what is going on. Dan explains that the dromaeosaurus was building a nest. Dan’s mother, however, blames their pet pug, Doug.

 

She never takes what Dan says seriously, always assuming he is just “playing.”

 

So who did take the shoes. It wasn’t Doug the Pug. And it wasn’t a dromaeosaurus because they’ve been extinct for 75 million years.

 

The only other conclusion, if we accept that dinosaurs cannot be running around modern day Toronto, is that Dan himself took the shoes and put them in the cabinet, but “disassociated” from the memory. As far as he is concerned, it was the dromaeosaurus.

 

So far, we have evidence of visual and auditory hallucinations, thought disorders (despite his scientific mind he treats the dinosaurs he sees as real), disassociative actions he attributes to long dead animals, and social isolation during hallucinatory periods. If it was imagination, he could turn it off, but he can’t. Even when he is called back to do something mundane like eat dinner, take out the garbage, or go to class, the dinosaurs wait for him.

 

But it’s a kid’s show, right? What do you expect, Michael? For them to put Dan on Thorazine?

 

Not at all. At this point, it does not seem like Dan’s hallucinations are interfering with his life. He has friends. He goes to school. He is exhibiting no violence.

 

In short, he is functional.

 

But he is also schizophrenic.

 

He is functional because the dinosaurs are not a threat. They do not make him do dangerous things. Even T. Rex doesn’t eat him (although T. Rex and the other carnivores will go after other dinosaurs, which Dan attempts to stop).

 

Much like how Jani will try to stop Eighty from jumping off a building. Or yell at 400 not to do something bad.

 

His friends and his family treat his schizophrenic symptoms as an “eccentricity” and don’t appear bothered in the least. In fact, they are quite accepting of his obsession, even when it interrupts their hockey game.

 

I don’t know. Maybe that will change when Dan graduates to Degrassi.

 

So you ask me what Jani experiences?

 

Watch “Dino Dan.”

 

That is the closest representation I have seen to what I believe Jani experiences.

 

“Dino Dan” is not just a show that teaches kids about dinosaurs. It is also, perhaps unintentionally, the first realistic portrayal of child onset schizophrenia.

 

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The Science of Fear

Somewhere along the line, I lost track of the world.

 

I remember the Tsunami of December 26th, 2004. I remember that nearly a quarter of a million people died.

 

Jani was two.

 

I remember Hurricane Katrina.

 

Jani was three.

 

And then, around 2007, I started to slip away.

 

I remember night we conceived Bodhi, something I cannot say about Jani. Jani was conceived November 19th, 2001, but I don’t remember anything about that night. I remember September 11th. I remember for three days the world came to a halt. I remember going to a church service. I don’t think Susan was with me. I don’t know where she was. Maybe she was at work. I went with our neighbor at the time, Anne. I remember holding a small American flag in my hand during the service, feeling totally inadequate. I remember thinking, in those three days that the world stopped, that things had to change. This had to be it. This had to be one of those defining moments where the history of the human race shifts forever.

 

And the President encouraged us to get back to our lives, because if we didn’t, “the terrorists win.” We were told to shop.

 

I remember being in a daze as the world restarted again.

 

And nothing really changed.

 

For my students now, September 11th is a distant memory of their early childhood. Time doesn’t stop, fading as Little Boy and Fat Man must have faded for the small children of Japan who did not see the “Unforgettable Fire” over Hiroshima and Nagasaki.

 

This was driven home to me when we bought a Wiggles CD for Jani when she was a small, It’s a Wiggly, Wiggly World. The album features vocal collaborations between then Wiggles frontman Greg Page (the yellow Wiggle) and various artists. Mostly Australian, except for the final track, where Greg sings along with Atsuko Arai to the Japanese folk song “Haru Ga Kita” (which roughly translates into “Spring has Come”- I have included a link to the song. It is a beautiful song). Atusko Aria is from the city of Nara, Japan, but before the song there is an introduction featuring Anthony Field (the blue Wiggle). He introduces “our friend Miyoko is here from Japan.” He asks Miyoko where in Japan she comes from. She answers “Hiroshima.” “Ah, Hiroshima,” Anthony answers in a tone as if it is land of milk and Honey. “Can you tell me something about Hiroshima?” he asks. Miyoko answers his question in a long string of Japanese. When she done, Anthony responds, “Hey, hey, hey! That sounds wonderful!” He begins translating as if he perfectly understood what she said. “Seven rivers run through Hiroshima, with beautiful water which provides tasty oysters to eat. Yum, I love oysters! Well, I’m, I’m (he actually stammers here on the CD-I wonder if he really would eat an oyster out of a river in Hiroshima) off to Hiroshima….”

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Really?

 

Oysters?

 

“’I love oysters!?’”

 

Oysters from the same seven rivers that the people of Hiroshima jumped into because they were burning the morning of August 6th, 1945 when the world’s first atomic weapon used in combat was detonated a thousand feet over the city center?

 

I realize this is a kid’s record and not the place to discuss the realities of atomic weapons use. That wasn’t the point. The point for me was that August 6th, 1945 had no meaning anymore. Hiroshima had become just another city in a far off land called Japan, with its biggest claim to fame being its oysters (apparently they have recovered from the radiation).

 

It’s not that I want Hiroshima only remembered for being one of only two targets of atomic weapons in history (so far). But I don’t want us to forget, either.

 

Anne committed suicide three months before Jani was born. She was single. Her career had gone south. She was depressed and I knew it, but she was excited for us. I think I naively thought that Jani might save Anne, that she could be an “aunt,” that she would be a part of Jani’s life.

 

Five years later, in 2007, I was hoping Bodhi would do the same thing, that he would re-ignite the fire in Jani that disappeared between age two and age three, as the “imaginary friends” took over her life and she withdrew from the real flesh and blood friends she had.

 

I failed again, but I had no time to reflect on that. Jani was sinking further into moments of terrible violence that would come and go in a matter of minutes, lasting no longer than the time it took for Little Boy’s shockwave to race across Hiroshima. And then it was gone, leaving only the destruction. Interestingly enough, the Hiroshima Prefectural Industrial Promotions Hall (now known as the Hiroshima Peace Memorial), survived structurally intact, despite the fact that it was the building most directly under the detonation of Little Boy. That was us. Still standing, but with all our windows and doors blown out and with the “ghosts,” as the Japanese call them, on our steps, the shadows that all that is left of the people who were standing on them when Little Boy disintegrated them into atoms.

 

All I remember of the first part of 2008 is Jani and Bodhi and Susan. I don’t remember the world.

 

I remember the election. I remember Sarah Palin appearing on “Saturday Night Live,” looking like she didn’t think this was all that funny.

 

I don’t remember what happened in the world in 2009, other than the death of Michael Jackson. I remember that only because he and Jani happened to wind up in the same place on that day, UCLA. What I remember from 2009 was the constant fear that Jani was slipping away into her world. Our world didn’t matter. I was determined to follow Jani down the rabbit hole as far as I could until she went entirely inside her mind.

 

I think the earthquake in Haiti happened that year. Let me look it up. Oh, I was wrong. It happened in 2010. I remember hearing about it but if the world stopped I didn’t notice this time. I was in a fight, a fight for Jani’s mind, house to house, building to building, like Truman believed we would have to do if we were forced to invade Japan. Slowly, slowly, we halted the advance of the Army of Calalini and slowly, slowly, with clozapine, lithium, thorazine, and constant stimulation, constant distraction, the elimination of the stress of living with Bodhi thanks to the two apartments, we fought it back, back, back, back. We didn’t drive the enemy from her mind completely. They all still live on the outskirts, waiting for the day when the meds stop working or something else happens which allows them to surge back into the center of her mind.

 

Today, Jani exists in a Cold War between “them” and us. I say “Cold War” because, at least for the time being, the main war is over. We watch each other over the demilitarized zone that is Jani’s mind. There is occasional potshot, small arms fire, from the hallucinations but not major advance.

 

I wait for them, my finger always on the trigger. I suppose I will wait like this until I die.

 

I expected them to come back. If ever there was a time for them to make an advance again it has been these last three months.

 

I expected them to come back during the winter break, because they have the past three years. They didn’t.

 

I expected them to come back in January. Jani actually made it through Winter Break of 2009/2010 without going back to the hospital, but finally the stress of being out of her routine got to her in January of 2010 and she went back.

 

But they didn’t come. A few pot shots across the demilitarized zone but it never came to anything.

 

And then February came.

 

Wars are expensive. Even cold ones. In a way, they are more expensive because you are spending to prevent an attack that may never come.

 

In order to pay the rent on two apartments, I would have to teach five classes per semester, which is the standard full time teaching load for a college lecturer. Even then that would only cover rent and utilities, leaving nothing left over to actually live on.  I reached my peak teaching load in the fall of 2008: four classes and the CSUN Writing Center (which pays the equivalent of a 3 unit course).

 

Spring is always leaner. For those of us who are “part-time” lecturers, we call it “feast and famine.” Fall semester is the “feast” because of the massive influx of first time freshmen. For the past four years, CSUN has averaged over four thousand incoming freshman. And they all need either freshman composition or (increasingly) remedial composition, classes that are pretty much exclusively taught by lecturers like me. At CSUN, we have only one semester of freshman composition so half the classes disappear in the spring. All that is left is the remedial students. So the number of available classes gets cut in half and those of us who are at the bottom of seniority pile get whatever is left over once those at the top have received their entitlements. So in Spring I am lucky if I get two classes, the minimum necessary to keep my health insurance benefits. My department chair has gone out of his way to get me at least those two classes every spring.

 

When we rented the two one bedroom apartments, one each for Bodhi and Jani, in May of 2009, I was “carrying” nine units: two classes and the writing center. I could say that I expected to get back to five classes in the fall but that would be a lie, only because to be honest I wasn’t thinking about it at all. All I was thinking about was this was a way to keep Jani in our family. Cost be damned.

 

Jani was still in an out of the hospital through the summer of 2009 and we started clozapine. It became clear I could not go back to work. Jani could not function an entire day in school and we couldn’t afford a full day of preschool for Bodhi. But mainly it was that I felt that going back to work that fall would be abandoning my family. So I took Family Medical Leave, which would require CSUN to keep paying me for my “appointments” (classes I was supposed to teach) without me actually having to go in to teach. I told the three different departments I worked for in August of 2009. Two, English and what we at CSUN call “Academic First Year Experience,” which is a course on how to be a college student, maintained my appointments, even though they legally could have pulled them because I hadn’t received an “appointment letter” yet, which is basically my contract to teach that semester. The Writing Center, however, pulled my appointment and replaced me. As I said, they had the legal right to do this but I never forgave them for that. I simply stopped talking to my boss in that department and never responded to her emails in late 2009 asking if I was coming back. This was childish on my part because I couldn’t have come back anyway. Teaching is different. All I have to do to is teach the class and hold an office hour and then I can go home. The Writing Center had a set time commitment, spread out throughout the week. I never could have gone back anyway because I couldn’t be gone from Jani and Bodhi and Susan long enough to do it. That part of my life, where I had worked as a tutor for five years, was over. I just used the excuse that they screwed me over, denying me pay I felt I was entitled to during the fall of 2009.

 

I never spoke to my boss again, a woman I shared everything with, a woman who knew what I was going through. I sent my anger back through proxies, my colleagues who still worked there and followed my life on Facebook.

 

I regret that.

 

Ilene, if you are out there, I am sorry. I owed you better than that.

 

I returned to the English Department in Spring of 2010, getting my second class and keeping my benefits only because a colleague went out sick (Academic First Year Experience is only a Fall semester course because that is the only time CSUN admits freshmen).

 

My supervisor at AFYE asked me in Spring of 2010 if I wanted to reapply. I told her no. I loved the class but the last time I taught it, in the fall of 2008, I barely got through it. I felt I shorted those students. I didn’t have it left in me to give them what they deserved. So I withdrew from the “pool” (group of eligible faculty).

 

In the fall of 2010, I taught three classes, all in the English Department. The Writing Center and AFYE were gone by my own hand. All three classes, developmental reading, were “live” classes. I went to campus three days a week. Jani never did well on those days. Those days were always worse.

 

I explain why.

 

Just because I am in a cold war with Jani’s schizophrenia, with Calalini, with her hallucinations, does not mean I don’t interact with them.

 

Peace requires diplomacy.

 

Nixon went to China.

 

I go to Calalini. When Jani talks about her hallucinations and what they are doing, I talk back. We converse about them. I communicate with them through her. It isn’t hostile. I don’t send death threats “Watch it, 400, or I will nuke you with Thorazine.” We discuss what 400 or 80 or any of them are doing. I ask her if she needs my help, if she needs extra medication. If she does, she will ask for it. Every day she tells me abruptly, out of the blue while I am droning on about something else, that “a five got run over” or a “nine was eaten by a seven.”

 

So I treat them.

 

With Jani, I take the vital signs of the imaginary five. I send it to radiology for a CT scan or X-ray. I reset the leg. I go in arthroscopically and remove the nine that the seven aspirated into its lungs. I do all of this with complete seriousness while Jani watches with a look on her face like she is really worried that the invisible number is going to die.

 

Everyday I work as a field medic for Jani’s hallucinations.

 

Just because they are the enemy does not mean they aren’t entitled to medical care.

 

By the way, this particular attribute of Jani’s psychosis is what makes her schizophrenia rather unique. Most people with schizophrenia are terrified by their hallucinations. Jani is not. This is what makes Jani’s manifestation of her schizophrenia so rare. Not better. Not worse. Just different. I wouldn’t want her terrified. I have seen that in other children and I wouldn’t wish that on my worst enemy.

 

I have seen it in Bodhi, who will scream “I don’t want it!” and flail around why we cry at him, “Bodhi! What is it?”

 

So far, he doesn’t do this very often. But we are watching. So far, he seems more autistic than schizophrenic, although he does not yet have that diagnosis either. But both the school district and his psychiatrist (who is also Jani’s psychiatrist) “can make a case for autism.” Bodhi appears to zone out on our world, but he hyperfocuses on things that exist in our world. Like cars. He is obsessed with toy cars. But today, after we dropped Jani off for her two hours of school, he picked up “Babbles,” a talking “Baby Alive” doll Jani has, and was holding it and wrapping it up and taking care of it. There was a sweetness there that we rarely saw in Jani. Jani puts her stuffed animals to bed, wrapping them up, but it is different. There is no love in it. It is more like a routine, something she feels compelled to do like a OCD person washing hands.

 

Anyway, diplomatic channels are open to Calalini and unfortunately it seems I am the secretary of state for our world. Jani doesn’t do well when I am not around. It is like she has lost her “translator.”

 

This semester I got lucky again. I have two classes and they are both online so I never go to campus anymore. I still care deeply about my friends and colleagues there and I know they still care deeply about me. But it still feels like I am losing touch with CSUN, with the life I used to have. People who don’t know me will periodically say, “Well, I am sure you’ll be able to go back.”

 

What they mean is back to work full-time. Maybe. I don’t know. But that isn’t the issue. What they don’t understand is I can go back physically but I can never go back emotionally. I can’t reverse time. Everytime I go now, I carry with me everything that has happened over the past four years. I can’t erase that.

 

In that sense, there is no going back. I am separated from that life in way that I will never be able to close. I can go back into the building. But I can’t go back. The only reason I can still teach is because when I teach I separate my self from myself. I play a role.

 

Back to February.

 

Usually, my paycheck only gives me enough to pay one apartment.

 

The money for the other one comes from you.

 

We had so many bills that hadn’t been paid for months I used my regular paycheck to try and get caught up. I knew this would make us late on BOTH apartments but I expected a large check, my payment for teaching a winter session class online (winter and summer classes are paid in one large payment).

 

Except my paperwork to get paid was three days late getting to Payroll.

 

CSUN pays everything only once per month. If the deadline is missed, the payment gets rolled over to the next month. So instead of getting paid on February 15th, now I wouldn’t be paid until March 15th.

 

I had nothing to pay the rent. Normally I need 1200. Now I needed 2600, plus late fees and legal fees because we got sued for eviction. In total, I needed about four grand.

 

That was more than what my readers could do, although they tried.

 

I panicked. I lashed out. I got childish again and cut off communication. Apparently I made some reference to stopping this blog, which I honestly don’t remember. What I do remember was feeling trapped. While so many people were trying to raise the money for us, I focused on a tiny handful of critics, the ones who have been leaving me comments telling me to send Jani to residential ever since my blogs became more and more about how much we needed money. That was never my intention. I never intended this blog to be a handout. It was supposed to be illuminating. It was supposed to be educating. It was supposed to give hope to those who live this life and understanding to those who don’t. But over the last several months it progressively devolved into my begging for money from the only source I had.

 

You.

 

I lashed out because by God I felt like I was winning this war. With the two apartments and the medications, I had pushed Calalini back. I, You, had given Jani a life, a good life, with her family. And it was working. Jani was walking up to other children at parks and asking them their names and how old they were. She wasn’t holding out her hand to show them an invisible rat. She was actually talking to them about what they were doing. She was showing interest in our world.

 

And I felt all of that was suddenly threatened because, as some of my critics like to say, I “can ‘t support my family.”

 

I actually do. Just not in a way they can understand.

 

Yes, part of my job is to keep the roofs over the heads of my children.

 

But they need more than that, unfortunately.

 

They need me physically.

 

And I can’t be in two places at once.

 

Somebody in a comment pointed out that I was “starting to act like a victim,” like I was purely at the mercy of circumstance, when I chose this living arrangement.

 

I think my reply was pretty hostile at the time but actually, they were right.

 

I was starting to act like a victim.

 

And I did choose this. I didn’t choose for Jani to have schizophrenia but I did indeed make the choice to keep my family together by renting two apartments I could not afford and always really knew I couldn’t had I had time to think about it. Not that it would have changed my decision. My decision was to rent two apartments or send Jani to residential in either Texas or Florida. Those were the only residential options presented to us by the Department of Mental Health because they were the only two facilities (both Deveroux) willing to take her. Every residential in California that could take a girl her age rejected her “packet” because she was too “staff-intensive,” a euphemism for “too psychotic.”

 

They rejected her again as late as October of 2010 when we went through another evaluation and another recommendation for residential even though I thought Jani was functioning pretty well.

 

Once again it was either Texas or Florida. I didn’t think she needed residential at all at this point and I sure as hell wasn’t going to let my eight year old daughter be sent across the fucking country.

 

So, yes, I chose this living arrangement. I can use the excuse that the only offers were from Texas or Florida but I’ll be honest. I wasn’t going to send her away. I wasn’t going to send her away in the beginning and I wasn’t going to send her away now.

 

Ah, but it is easy to spit in the face of defeat when you know reinforcements are coming, isn’t it?

 

And reinforcements did come. An old college friend from grad school who I actually only ever took one class from messaged me and offered his bonus. Four grand.

 

One day I will repay the money, just like I will repay all the money that has been donated to us. At least that is my hope.

 

But things like that I can never repay. Not the money. The kindness. I try but it will take me the rest of my life.

 

But that was just February rents.

 

What about March?

 

What about April?

 

What about God knows how long into the future?

 

I now know what it must have felt like in that hot room deep under the Imperial Palace in Tokyo on the night of August 14th, 1945, when the ministers passed around a single piece of paper. The only thing on this paper was their names, in Japanese script. The last one to receive the paper was Minister of the Army, General Korechika Anami. None of the other ministers were sure if he would sign.

 

He stared at the paper, then picked up a pen, dipped it in ink, and signed.

 

The unconditional surrender of Japan to the Allies.

 

I had reached that point. The surrender document was in front of me. Like Anami, I could fight on to the death. But the war was lost. Anami made his decision based on what was best for Japan, not what was best for the Army. Japan could not fight on any longer, not without terrible loss of life.

 

I could not fight on any longer, not without the destruction of the very thing I had started this war to protect: My family.

 

My surrender document was a “30 Day Intent to Vacate” Notice for the two apartments.

 

They were right. This situation had become untenable. I cannot fight this war without the resources to do it.

 

So I surrendered on February 21st, 2011.

 

Not unconditionally, however.

 

What?

 

Did you think you were going to read that I sent Jani to residential in Texas or Florida?

 

Not a chance.

 

There was a two bedroom apartment available in our complex, at a good price, one thousand dollars less than what we pay for the two one bedrooms.

 

If I believed that Bodhi was still in danger, I would not have surrendered. But I thought that maybe Jani was ready. He’s been in her apartment and she’s been fine with it. She is getting better all the time. Maybe I had been dragging this out too long. Maybe this was the push we needed to reunify the family.

 

It was a nice apartment. I looked around but I decided to stay in the same complex, primarily because Jani has been here since she was three. I wanted to minimize the impact to her as much as possible. Moving in the same complex would be almost like not moving at all.

 

The bedrooms were at opposite ends of the apartment. Jani didn’t want to move but when I told her it was going to be in the same complex so wasn’t really like a move and we were moving to building 12 and “Building 12 smells!” as a joke, she seemed to get excited about it.

 

Notice I said two bedrooms, not three. Susan and I would continue to be “staff,” alternating nights in each bedroom with each child. Except now instead of crossing a parking lot, we would just have to cross the living room.

 

We were all set.

 

But there was a catch. Even though we have lived in this complex for five years and rented a total of four apartments, we still had to fill out another credit application. This is standard procedure. We have had to do this before the move from the one bedroom to the two bedroom while Jani was in the hospital the first time and then again when we wanted to rent the two one bedrooms.

 

Our application was denied based on our credit.

 

 

I couldn’t understand why. I have less debt now that I did two years ago. I ordered our credit reports and learned why we were rejected. You see, in the last two years I have settled all my credit card debts for less than what I owed. What I didn’t know is that paying a balance for less than you owe is still sent to the credit reporting agencies as an “adverse report.”

 

So my credit will be clear again some time in 2017.

 

So basically I surrendered and they handed back the surrender document. Thankfully, we were allowed to revoke our “30 Day Intent to Vacate” notices.

 

So we are still in the two apartments and will remain so for as far into the future as I can see. The struggle to pay for both of them will go on.

 

On the day I told Jani, I asked her if she would rather stay in the two apartments or move to building 12.

 

“Move to building 12,” she answered quickly.

 

“Are you sure?” I asked, knowing this was now impossible. I needed to know. I needed to alleviate my guilt. I needed to know I made the right decision to continue to live as we do. “Let me ask you this. If you could choose to stay in the two apartments, because we can, or move to building twelve, which would you take?”

 

“Stay in the two apartments,” Jani answered this time, again without delay.

 

When I told her we would be, she said the move had been “stressing her out.”

 

Sure, you can argue I got the answer I wanted. Maybe I did.

 

But what I do know is two weeks ago we went for Jani’s biweekly blood test to check her white blood cell count (required for anyone on clozapine because it can cause agranulocytosis, or destruction of the white blood cells). Despite being on clozapine, Jani’s WBC generally runs a little on the high side, around 7 or 8.  I got a call from the agency that arranges Jani’s lab work. “Is Jani sick?” I was asked. “Not that I am aware of. Why?”

 

Jani’s WBC had more than doubled to 18.

 

Jani’s psychiatrist immediately ordered us to get it checked again.

 

You see, Jani complains of pains all time, which always turn out to be psychosomatic (she feels tactile hallucinations). Yet once when she was running a 103 degree fever we had no idea. She complains she is hot when it is freezing outside and cold when it is hot. This is not unusual for people with schizophrenia. There can be some detachment or “disassociation” from the body. Now I know why I used to see a homeless man walking down the street in the middle of summer in LA wearing at least three or four heavy jackets. “Doesn’t he feel the heat?” I would ask myself.

 

No.

 

So Jani might be a little sick, we told her psychiatrist, and we wouldn’t know.

 

But her psychiatrist seemed a bit more concerned. She is usually unflappable.

 

And then I remembered what a high white blood cell count can mean.

 

Yes, it can indicate infection.

 

It can also indicate cancer.

 

Coupled with the fact that Jani’s bowel movements had been chalky white, I became terrified that Jani had cancer of the bile duct (bile is what makes our feces brown). And then I wondered if I caused this. I smoke. Jani comes out with me when I smoke. I don’t want her to but she insists. She needs to be around me.

 

Oh my God. Did I do this? I will live and she will die? Cancer of bile duct is fatal unless it can be completely removed by surgery.

 

That isn’t right. I should be the one to die.

 

I tried to talk myself out of it being cancer while we waited for the results of the second blood draw.

 

Her WBC came back down to 10, below her previous highs.

 

Right now we are awaiting the results of a chem panel to check metabolic function and kidney function.

 

Just to be sure.

 

I learned there is one more thing that can cause your white blood cell count to spike temporarily.

 

Stress. Stress causes your body to produce more white blood cells.

 

Jani has continued to say that the idea of moving was stressing her out.

 

I don’t know.

 

I don’t know.

 

All I know is the Cold War goes on.

 

 

PS: There are a lot of Japanese references in my blog, for obvious reasons. I am very much aware of the world outside again. This month, I would very much appreciate it if you would donate anything you can to relief agencies working in Japan. I will provide a link to a Paypal page were you can make donations to such agencies as the American Red Cross and Save the Children, among others. Donations to Japan so far are only about 90 million, far short of what had been donated to Haiti by this time.

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Update 3/18/11-Jani’s test chem panel came back and her organs are fine. White blood cell count remains normal.

 

We also got lease renewal notices for the two apartments today. Our rent will be going up by $38 a month. Could be worse. I am surprised at the increase only because I didn’t think the rental market in Southern California had recovered enough to support rent increases. We only have until the 28th to accept the deal so we will be taking it. Sorry to those who wanted us to move back into together. I  wanted it too but I think Jani needs at least least one more year.

 

We Get To Carry Each Other

I am going to ask you for money again…

 

…but not for us.

 

It’s for them….

 

That’s Maddox holding his baby brother, Lennox. Maddox is 7. He is diagnosed schizo-affective.

 

Something about that I don’t publicize is that I help other families when I can. When I could, I set up an online account and bought groceries for this family, even though they lived 1000 miles away from me.

 

Right now, their mother, Bridget, has until next Monday, the 14th, to pay a $1100 electric bill. They live in New Jersey (and the state refuses to help so don’t bother offering suggestions-they have seven days until they lose their heat). That is what matters-seven days and they lose their heat. In New Jersey. Bridget has a wooden stove but Maddox is drawn to fire and will try to play with it, so she has no choice but to run the floor vents. I don’t live on the East Coast but I have heard heating oil costs are exorbitant.

 

So…

 

Save money and run the wood stove, and risk Maddox burning himself to death.

 

Or

 

Get the heat shut off in seven days.

 

Or

 

Beg. I will do that.

 

I have donated 30$ dollars to her paypal account: faeriedelphiki@gmail.com. That is all I can do. I get paid again next Tuesday and I will make up the difference, but by then it will be too late.

 

So this is what I am asking from you. I want every reader of this blog to donate $10 to the account above. I get more than 110 readers so this shouldn’t take long.

 

Please. Don’t risk this child’s life by having Bridget turn on the wood stove to keep them warm. We can do this. We are human. This is our duty. Like Bono said in “One,” we get to carry each other.

 

I would rather you do this than donate to us. If it comes down to a choice, donate to Maddox and Lennox.

 

Ten dollars each. If we can’t do this for each other, then we aren’t human. This is what it means to be human. It means to carry each other. Bono didn’t mean that line as the task is a a burden. He meant that it is an honor. This is our duty as humans.

 

Because we all need to be carried sometimes….

 

Note: We made it! Bridget will be able to pay the heating bill and keep herself and her boys warm! Thank you to all of you who donated! You have my deepest, deepest thanks.

 

Michael 3/13/11

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