Jeffrey Kellen: "This Shell of Mine"

Jeff spent seven years teaching special education, and now works for Easter Seals Arc of Northeast Indiana with people who have various disabilities. He writes this work of fiction from the perspective of a young man with autism who does not speak. Click here to read our feature article on Jeff.
 

ome day I’m going to escape. I really am. I guess it’s just going to take a little bit longer than I anticipated.

Maybe I should back up a bit. You see, I’ve got this barely understood disorder called autism, and no, I’m no Rain Man. I think that movie did more disservice to people like me than actual good. Sure, it was only a movie, but now everybody expects me to be able to “count cards” while going to Vegas or do other stupid human tricks on Letterman or some weird crap like that.

In point of fact, I was fairly “normal” until about age two or so. I did all the stuff that most babies and toddlers go through—creeping, crawling, walking, talking, pooping, the list goes on and on. But four days after my second birthday, I got a hellacious fever (my mom says that I stayed at 103 degrees for something like two and a half days) and that’s when the proverbial bottom dropped out. I no longer wanted to play with other kids, loud noises freaked me out big time, incandescent lights look like supernovae all of a sudden, and I also just stopped talking. Verbosity just seemed kind of redundant when I could carry on whole conversations in my head. Who needed people when I had myself?

My parents, naturally, freaked out and lamented the loss of their “old” son. Mom in particular went through years of self-guilt trips, blaming herself for “not getting Brandon to the doctor in time.” Boy, if she only knew that the fever itself was simply the catalyst that sparked the fuse that was just waiting to go off at any moment. From the moment I was conceived, my genetic outlay had provided a time bomb just waiting to go off. Anything could have done it, really. Vaccines. Red food coloring. Sunspots. Cell phones. If you can think of a reason, you’re probably right in what could have caused it. All the king’s men and all the king’s horses (i.e. the doctors) didn’t have a clue in the world. All they had was a label and an “I’m very sorry Mr. and Mrs. Rothman. Better luck next time!”

Of course, my parents were in complete denial for the first year or so and they touted me around to just about every major hospital and clinic that the United States had to offer. And, of course, they were sent back home with usually the same response as when they received my initial diagnosis, except sometimes their ears were cruelly perked up when they heard of false hopes of “He may grow out of it” or “There’s this promising new treatment at so-and-so university that you may want to check out,” all to no avail. I never did “grow out of it,” and the leads they followed at these universities or special clinics were often part of immensely long longitudinal studies where the results wouldn’t be known until I was nearly twenty-two.

So, back home to Bridgeport, Indiana we would go, Mom and Dad usually more depressed than ever, and me continually retreating into my own world that was forming more and more dimensions every day. You see, that’s what all the doctors and specialists and teachers could never quite get—here they were, along with my parents and family feeling sorry as hell for me that I was virtually cut off from the world and not able to interact with anybody, when in reality, I had all the interaction I could ever possibly hope to have. Don’t get me wrong. I still loved my parents and my two older brothers and whatever other family member that I had contact with; it’s just that instead of willingly giving them a kiss or a hug or even a simple hello, I would involve them in my own world in ways they couldn’t possibly imagine.

"What they never realized is that I was also able to take them on wonderful adventures that rivaled those I saw in those wonderful Star Wars or Indiana Jones movies."

Take my two older brothers, Mike and Jacob, for example. Those guys were probably the sweetest brothers you could ever hope to have. They tried to interact with me, get me to do stuff with them, you name it, long after they (and long before my parents were willing to admit it) realized that I just wasn’t going to be your typical, “normal” brother. They took me on long walks through the woods, defended my honor (almost violently sometimes) when other kids would call me “retard” and other crap like that, read to me, etc., etc. What they never realized is that I was also able to take them on wonderful adventures that rivaled those I saw in those wonderful Star Wars or Indiana Jones movies. The sad part is they never even had a clue what they were involved with, and how could they—it was all in my head, and I could never tell them word one about what I was able to do for them. To this day I’m still making up wild yarns with them as my costars in movies that Hollywood could only dream about.

And that’s pretty much how it went up until I “graduated” from high school. I use the term graduated very loosely because they changed education law around so much that in order to actually “graduate” I had to pass these stupid tests that a good third of the non-special education population could never even hope to pass. So, on June 6th of some year, they sent me home with my very own “Certificate of Attendance” that proved that I showed up to Bridgeport High four years in a row and didn’t cause too much trouble. I imagine the paper it was printed on, along with its declaration, was probably worth less than a cup of coffee at your local McDonald’s Luxury Lounge.

Since I was pretty much nonverbal most of my life except for a few words grunted out here and there, my vocational options were pretty severely limited. Fortunately Mom and Dad were able to keep me at home after I “graduated” from high school, and, with some help from a not-for-profit organization in town, they even got me a job bagging cookies on an assembly line making minimum wage for a job that would make most go out of their mind from sheer boredom.

Not me, though. My mind is pretty much all I have, and believe you me, those hours spent on the factory floor at the Kooligan Kookie plant were some of my best ever. Not only was I getting paid to do what most would, by any stretch of the imagination, be considered to be the most menial of tasks, but I was also, for what it’s worth, getting paid to live the most outlandish fantasies that just aboutany human could ever dream up. Trust me, I would look up from task to the faces of some of my fellow co-workers and you could just tell that if offered to put a bullet through their brain to end the mindless droning of their work they would take the gun in a proverbial heartbeat. Me, I would just fade out, like a cloud does the sun on a hot, summer day, and Boom! there I was, back either flying around some made-up galaxy or filling the shoes of some superhero that I had dreamt of back when I was six. And they called me the unlucky one for having this disability known as autism. Ha! At least I could very well escape from whatever situation I was in whenever I wanted to.

But, I couldn’t, really, which brings me back to my opening point I posited at the beginning of this tale. As much as I could escape within the confines of my own brain (and boy did I love it when I did), there was always one place that I never could reach, and that was the land of Human Contact. My emotions have always been too scattered to label what I feel as either frustrated, disappointed, or even outright apathetic about the whole situation. Sure, I’ve felt the whole gamut of human feeling, and I’ve even tried expressing as such to my family from time to time. Usually, however, the whole of the situation was usually conflated into some disgusting display of hand-waving and tears and I would feel so sorry for my parents or my brothers who would try so desperately to understand just what the heck I was feeling or trying to communicate. All to no avail. Either they thought I wanted some toy I couldn’t get to or had some mysterious ailment that I couldn’t tell them about (which often led to many unnecessary trips to the doctor) or was acting out because that’s what people like me did. Yeah, you could say I was frustrated, but probably the single greatest emotion I’ve felt in this regard is disappointment. Disappointment that my own family, as much as they love me and try to understand me, cannot seem to figure me out. I don’t really blame them, but they just seem to assume that since I can’t communicate my higher-level needs that I don’t have any.

For example, little do they know that despite being secluded in a classroom for many years with other students that were barely aware of their own existence that I was able to teach myself to read on a much higher level than most of my teachers ever thought possible. Many a time I would sneak into my parents’ library (they loved the classics) and pore over its many volumes of great literature—Joyce, Dickens, Tolstoy, Kafka—the list goes on and on. One of my favorites was Finnegans Wake, a novel that has baffled many for nearly a century. I ate that stuff up like a newly-made hot fudge sundae from Dairy Queen. Honestly, I couldn’t see what the big deal was, really. His stream-of-consciousness work, along with Faulkner’s, provided me with hours of joy that rivaled even my own mind’s.

It was shortly after discovering these authors that I thought to myself, Hey, why couldn’t I write my own stuff and get it published. I mean, if Joyce and Faulkner could come up with stuff like this, then certainly someone like me had just as much right to produce his own work and disseminate it to the world at large.

Ah, but here was where rubber of reality hit the proverbial road. As much as my mind allowed me to access these previously written great works of literature, when it came to transcribing my own thoughts and ideas down into the so-called world of reality, I was met with instant frustration.
You see, throughout my years at school I had been taught how to write my name and my ABCs and even my address and phone number. But, when my teachers attempted to get me to write even the simplest of sentences, “Johnny rode his bike to school today,” for example, all that would come out would be something like this:

Fjjiiei jjd skkk keei djjei do.

"All through my middle school years I would either cry or crumple up my papers; sometimes, I stamped my feet or slapped my head trying to force my visions out of my teeming brain."

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