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October 25, 2001
JD Salinger once wrote something about how true writers don’t think of writing as their career; they think of it as their religion. I am a writer. One who hasn’t been published in anything more than a tiny college collection of stories or on the web, but a writer nonetheless.
I, as writers often do, tell myself that I write for others. That I do it to reach someone else, or as a means of communication, or as a hope to provide insight into whatever topic is at hand. That’s pretty much crap. Oh yeah, I do that, but it’s secondary to the truth. Truth is, I write because it’s the only thing that keeps me sane. It’s the only way to calm my overworked mind from spinning. It’s what helps me work through life.
This journal isn’t nearly the only thing that until recently I wrote on a regular basis. I’m working on a first draft of one screenplay, a third draft on a second, and maybe three or four essays. Typically, after the kids were fast asleep and the night was waning, I was typing away at one of these monsters. Up until three weeks ago.
Three weeks ago, things fell apart. There is no other way to put it; it’s just the way it happened. There is a lot of back-story to it all, and it would be laborious to write it out. But interestingly, the thing that made me begin to question everything about Ivan was his teeth. The same day the airplanes were crashed into the World Trade Center and the Pentagon was the same day I found out Ivan had 8 cavities. It was a bad day, punctuated by the unthinkable. But after I had managed to turn the round-the-clock news off, my mind was still working. 8 cavities? Eight? No two-year old has 8 cavities. Most especially when his sister has none.
The next morning I decided that we were taking Ivan to his pediatrician, and the sooner the better. I had done some research and as a result had concluded that Ivan was anemic (he constantly ate dirt if given the chance), but knew that something else was amiss. This wasn’t a new feeling – John and I had been volleying the idea back and forth for months – but the cavities were the last straw. It’s a little funny in retrospect, how something so seemingly unrelated would prove to be the thorn in the side.
So a few days later, we took Ivan to his pediatrician. After blood work, it was discovered that Ivan was severely anemic – think third world country anemic. This again was a red flag to me. Ivan’s iron levels were tested at his 18-month check up and he was fine. His diet hadn’t changed that much in 5 months, so I am still at a loss as to how they could have dropped like a stone so quickly.
But John and I also knew that this wasn’t the core of the problem. We had him tested for lead poisoning, and made an appointment to return in a few days. Over that break, we wrote a laundry list of symptoms out for his doctor. While we were doing it, I noticed that two out of three were behavioral symptoms, like spinning or head banging. I clung to the idea that there was something else it could be – something easy and that a nice, big pharmaceutical company made a pill for.
Back again, the ped. told us that Ivan didn’t have lead poisoning, but she ordered further blood tests to rule out a blood disorder. We gave her our “Ivan List”. After reviewing it our pediatrician referred us to the Early Intervention program and to a private facility called The Children’s Program here in Portland. She warned us that we would hear the word “autism”, but not to be worried. Her tone seemed so natural and friendly, and it was so easy to believe that he wasn’t autistic.
So we made an appointment with a specialist at The Children’s Program, and with Early Intervention. The idea was that we would get two opinions and that might give us more to go on. Early Intervention is run through our school district and while being considered very good, it is accompanied by the typical waiting period that goes hand in hand with anything sponsored by the government. So we made the first screening appointment with Early Intervention and made an evaluation appointment with The Children’s Program. As it turned out, the screening appointment was the day before the evaluation.
The screening call was basically to decide if Ivan needed an evaluation. It was done by a behavioral and developmental expert who came out to the house. She watched Ivan for about an hour, asked us questions, and decided that yes, Ivan needed to come in for in depth testing with several professionals. At this point John and I were just hoping it would be some sort of developmental delay and not autism.
I should note here that Early Intervention is free, while The Children’s Program is not. We knew our insurance would cover at least testing for Ivan, so we opted to do both.
The next day we headed out to The Children’s Program, and met with our specialist. I liked him for the get go. He seemed kind and intelligent and was both a pediatrician and a child psychologist. He ushered the four of us into his office and began the same round of questions the EI lady had put to us the day before.
About a third of the way through the questions I had an ugly realization. I recognized that I had been subconsciously lying about Ivan’s behavior. I had smoothed over rough points – like the head banging – and had over stated abilities – like his word usage. The moment – no the second – I realized this I knew we weren’t leaving there with an easy diagnosis. The fact that I had, on some other level, been lying about Ivan’s abilities was too much to ignore. I had always known something was wrong – I just didn’t know how to face it.
And this became all the more apparent when the doctor tried to interact with Ivan. Ivan who doesn’t respond to his name, who can’t follow directions, who uses some words (“baba”, “dada”) but uses them indiscriminately. These aren’t things that can be explained away. Still, when the doctor told us that it was pretty obvious that “Ivan is autistic,” I felt like someone had jolted me with a bolt of electricity. It’s easier to deal with things when they are just “maybes” or “what-ifs” than when they are concrete, and someone is writing “autistic” in a chart with your baby’s name on it.
The doctor continued to talk about what this meant to us, where we could go, things we needed to do. I don’t remember much of the conversation. I remember consciously telling myself not to cry because I knew once I started that would be it – I wouldn’t be stopping anytime soon. Then I glanced over at Chloe and Ivan, who were playing together. Ivan’s playtime with Chloe is one of the things I have never had to lie about – Ivan absolutely adores her. He loves us too and will look to us for affection and love. But Chloe – Chloe is his world. What I remember seeing was this stupid set of blocks the doctor had in his office. Chloe and Ivan were sitting on the floor playing with them. The doctor had been trying to get Ivan to follow his directions to stack the blocks, and Ivan had ignored him. But now, sitting next to each other, I watched as Chloe gently took Ivan’s hand, picked up a block, and set it atop another. And she said “Look Ivan, like this, put it right here.” And Ivan was smiling. Even through his autistic-addled brain, a brain that the doctor was telling us “didn’t work right,” he was every bit as enamored of his big sister as any “normal” little brother.
I don’t remember anything after that, except for the doctor handing me his box of tissues and telling me it would be all right.
Even with the image of Chloe and Ivan burned into my head, I had trouble those first few days. I called in to work the day after we found out, and had to tell my supervisor over and over again “Ivan is autistic.” I was crying too hard for anyone to understand me. John and I both grieved as though someone had died. In a sense, someone had. The concept of what Ivan was to both of us had changed dramatically in the span of minutes, despite our foreknowledge. John called our families for the both of us. I knew I didn’t have the strength to do it.
Later that day, I called Jenn, one of my closest work friends, and told her everything. Then I asked her to do me a huge favor. I asked her to go tell my work unit what was up, and ask them to please give me some space when I came back. It turned out to be one of the best ideas I ever had. And Jenn, who can never do anything half way, got on the internet and printed up a dozen FAQs on autism to give to them. She handed them out, told them what was going on, and stressed the fact that I was not going to be able to talk about it for awhile – maybe a week or two. I can’t imagine what would have happened had I not thought of this. Every time someone would have asked me “So, how’s Ivan?” I would have lost it.
As it was, I returned the following day, and was greeted warmly. Flowers were on my desk, with a card signed by everyone. A sweet motherly woman I work with had baked a carrot cake for Ivan because she somehow remembered that six months earlier I had mentioned it was his favorite dessert. At lunchtime, someone dropped off take out from my favorite Chinese place with a note “You need to remember to eat”. It was unsigned. I still don’t know who did that. For all of my complaining about my coworkers’ inabilities to accept my birth choices, almost all of them knew how to handle this.
For a week and a half, no one asked me directly about Ivan. Other gifts turned up – more lunches, another arrangement of flowers, countless hugs. They waited until they knew I was ready to talk, which, strangely, was signaled by another return to writing. I typically write a daily memo to the office giving them the heads up on anything happening. What’s not typical about it is that I try to make it as laugh out loud funny as possible. It’s not hard. I work in insurance. And, unless you haven’t noticed, most insurance people aren’t that funny. I’m like the Chris Rock of my department. Well, the white, female, less vulgar Chris Rock.
So when, eleven days after Ivan’s diagnosis, I sent out a memo that managed to make fun of all three of our supervisors, my coworkers nearly cheered. I think they would have, but they are insurance people.
Slowly, people started wandering towards my desk, asking polite questions, seeing if they could help. 95% of the people I work with were great. They had actually read Jenn’s FAQs, and knew that I didn’t really want answers or references right now, I just needed support.
I had a few run-ins with people who just didn’t get it. Mostly this comes from the “mean-wells”. You know, the people that mean well, but sometimes can’t think of the right thing to say. I had a coworker go on and on about how she knew exactly what I was going through because her son was dyslexic. That would be like me telling someone who has lung cancer “Hey – I had bronchitis really, really bad once, so I know exactly what you are going through.” But she meant well, and the worst thing that happened was that I felt kind of confused by our conversation.
The worst person has been the aforementioned “Pervert” lady (in a previous entry). After things had let up a bit, she began this endless stream of questions as to the “whys” of autism. Some of her questions were downright rude, and included such beauts as “Is it from watching too much TV?” or “Is it from a lack of discipline?” At some point my nice-o-meter shut off, which was about the same time she wondered out loud if John and I were going to try for another boy to “carry on the family name”.
Truthfully, I felt like hitting her. I’m not a violent person but I swear to you, any idiot that gives me any crap about Ivan had better hope they can run faster than me. There is some nerve, somewhere in my brain, that equates a verbal attack on Ivan as a physical one.
But I didn’t hit her. I was at work after all. Instead I stood there for a long, dark second. I thought of all kinds of things I could say, verbal assaults I could rain upon her and her lame ass comments. But this didn’t come out. Instead I heard a voice say something like “There is a difference between having an opinion and having the class to know when to say it. And you don’t know the difference.” What surprised me was that it was my voice, and it was cold, steely and not at all wavering. And then I turned around and walked back to my desk, and I haven’t spoken to her since. It’s not often I can manage to get off a good comeback, but when it does happen, look out. Happily, she’s stayed away from me too.
But most people aren’t at all like that. What has surprised me is the way in which some people can span the chasm of experience and still give the impression of empathy. These people don’t have a clue what I’m going through first hand, but they somehow manage to emulate that they do. That is a gift. For us both I think.
But, memos aside, I haven’t been writing these past three weeks. A part of me wanted to give it up – all of it, the journal, the screenplays, the essays. What kept returning to me was a memory of, of all things, a comet. Not any comet, but the Hale-Bopp comet. But I think I need to back up a little and explain.
In February of 1997 my dad died from Hepatitis C. We had known about it for six years, and knew the finality of it would cleave us apart someday. But what happens is that someday never seems to appear, and you let yourself lapse into believing that time has stopped for you and your family. So when my dad died of liver failure, it felt like it was out of nowhere. I was 23. My brothers were 21 and 17.
After my dad’s death I felt like life was futile. My dad had struggled his entire forty-six years, and still died. We had struggled with him, and still lost him. The world seemed like a cold place.
It didn’t help that a few weeks after his death, I received a rejection letter from a prestigious film school I had applied as a transfer student to. In typical Heather fashion I had decided that I only wanted to attend one school – The California Institute of the Arts – and applied only there. I didn’t get in. The rejection was nothing in comparison to losing my dad, but the sum of the two was more than I could bear.
I fell behind in school, couldn’t sleep, couldn’t eat. Weeks went on like this, and I began to mimic grief because it seemed normal. I had decided to drop out of school – why get a degree when we’re all going to die anyway, right? I had stopped writing. I had ceased to function in any way, shape or form as I had before.
Then it happened. In the first week of April, when Bakersfield and the high desert of California is still beautiful from the winter rains, I found myself driving out of town, along the bluffs that blanketed the valley, and up towards the sky. I didn’t think when I drove. I didn’t turn on the radio. I didn’t hum or talk to myself. If someone where to ask me later, I’d say that I sort of opened my eyes and there I was – some side road in the middle of nowhere, looking out on a plain of red rock and brush. And for some reason I looked up and I saw the comet.
In real life, people rarely have epiphanies the way characters in a movie do. It’s a slow, arduous task to change even the minutest detail of a life, and it seems to take achingly long. But on that night, as I glanced up and saw this blazing white comet streaked against the sky, framed by the blazing red canvas of the earth, I had a cinematic epiphany. I realized that a world where I can gaze at something was miraculous and beautiful and as fleeting as a comet, or my dad, was not a futile place. How many people had gazed upon this comet’s lines, or upon the face of a loved one, and known wonder? How many generations before me had seen this one, tiny miracle in a universe full of them? And I, in the middle of a desert, at the end of the twentieth century, was connected to them all.
People are fond of saying that “It’s not whether or not you fall down that counts. It’s whether or not you get back up”. I disagree. The truth comes when you realize that the only choice is to get back up.
This is what I realized about Ivan. That I was looking at the same little miracle I had always looked at. The only thing that changed was our perception of him. And I remembered that comet. That there is beauty in everything, even when he spins in circles or waves his hands or babbles incoherently.
One of my favorite movies is “American Beauty”. At the end, one of the main characters says something that I’ve never been able to forget:
“...it's hard to stay mad, when there's so much beauty in the world. Sometimes I feel like I'm seeing it all at once, and it's too much, my heart fills up like a balloon that's about to burst...”
That’s what I realized a little over a week ago. So, here I am. A few more scars, a little more tired, but amazingly, still the same.
heather r
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