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….”[video:
“’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.
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.
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.
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.[video:
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.