I don’t know when a seizure will strike, but when it does, it’s like a miracle. When it first starts, it’s like a little shock. It begins in my head, just behind my eyes, a small crackling feeling. Then, almost instantly, it shifts into a swirl of color that shuts down my vision; red comes first, then a light blue, which turns slightly darker until it’s as though I were looking at the world through dark, blue-tinted sunglasses. Only I’m not looking out at the world, at least at the normal world. The images I “see” are from inside my head. It’s as though my eyeballs are turned around backward, looking into my brain, and what I see is everything I’ve dreamed, experienced, or imagined.
The medicine I am given to control the seizures lessens my muscle contractions, allowing the seizure to affect only my brain. This is great. The bad part of the seizures used to be the way I felt when my muscles would spasm. It felt like I was going to crack apart. But now the medicine keeps my muscles relaxed even as the seizure is happening and protects my body from injury. I’ve heard that seizures have been known to break bones, including backbones—like I don’t have enough problems? That’s just what I need, to be paralyzed with a broken back.
As the seizure continues, I begin to smile and laugh. One of my doctors explained to my mom that this reaction is just an “autonomic, uncontrollable systemic reflex,” whatever that is. The doctor said the laughter is just a response to waves of electric impulses flowing through my frontal lobe. Actually I know that my smile and laughter during seizures are really irritating to my family, especially my brother, who hates my seizures almost as much as my dad hates them. I guess it’s pretty annoying to be around someone who laughs randomly, just laughs and laughs for no reason at all—I’m sure it kind of rubs it in, just how disconnected I am. But to me the laughter always feels great. It’s kind of like what I imagine the giggles must feel like, when everything seems hilariously funny. These laughter moments in my seizures feel like real happiness to me. Why not enjoy them? Think about it: Why should we care whether what makes us happy is just an electrical impulse in our brain or something funny that we see some fool do on TV? Does it matter what makes you smile? Wouldn’t you rather be happy for no reason than unhappy for good reasons? All I know, though, is that my electric happiness doesn’t help my family much—imagine a world where every time you laughed, everybody else looked sad.
After the smile/laughter part of my seizure has passed, the room begins to swirl around me, not fast or dizzying, but slowly, allowing me to remember it, see it as it was in the moment before the seizure arrived. Of course, it’s not the room out there that is spinning, it is the room in my head; I get a 360-degree view of every detail. What happens next is hard to put into words without sounding like a moronic advertisement for the Granola New Age Spirit World Gazette.
The simplest way to describe it is to say that as the room swirls and I finish checking off everything around me … well … my spirit leaves my body. I hate to say this! I mean, what is a spirit anyway? By saying this, I guess I mean that I accept that we have spirits, and that they can come and go from us. I don’t even know that I really believe any of that stuff. But I do know what happens when a seizure comes: As the room finishes its swirling, the blue haze lifts and colors become as sharp and clear as crystals. Then, as my laughter winds down to a slow, steady breathing, a part of me rises from my body. I watch; I guess what I mean is that my spirit watches my bent, unconscious body from somewhere outside myself. If it didn’t happen to me, I wouldn’t believe it.
The first few times my spirit left my body, I was ten years old. It was about the same time that the doctors got my seizure medication just right. When it first happened, it scared the hell out of me; I thought maybe I was dead, and that I’d never go back into my body again. Back then I felt afraid to wander too far away from myself. After a while, though, I realized that as soon as my body awakens from a seizure, I’m forced back inside myself. My little trips have time limits.
I can’t make a seizure happen or stop one really, although sometimes, if I concentrate hard enough, I seem to be able to hold it off for a little while. For the most part, though, my seizures are not interested in what I’m doing at the moment they hit; they just kick down the door to my brain, charge in, and make themselves at home.
Of course, except for seizures, my life is one of total dependence. Once I started being able to sneak away from my body, seizures became very important to me. I love the feeling of movement, the pure joy of being able to fly. I love the feeling of escaping from my screwed-up, worthless body. I love my seizures because they give me the kind of life I imagine normal people enjoy, and then some. They give me freedom.
When my spirit is out of my body, although I have no physical body, I have complete control of my motions. I do all the things I see and imagine other people do: I soar, sail, walk, run, skip, sit, lie down, roll over, wiggle like a snake, swim like a fish, leap tall buildings in a single bound, slither through cracks in sidewalks and walls, zip over the clouds, whirl like a dervish, dance like John Travolta, sing like Kurt Cobain, and look the world in the eye.
When I’m in a seizure, I go to a different reality. It’s like I can do anything I ever wanted to do. I remember touching Cindy’s hands as she slept and thanking her for teaching me to read; I remember sitting at the edge of the ocean, digging my toes in the sand, watching whales blow spray and then dive down into the black water. I remember yelling in my dad’s ear telling him I was okay. I remember kissing my mom’s cheek and cuddling her. All these memories are hazy, as if coated in that filmy stuff that photographers use to make homely people look pretty in studio photographs.
Are these memories of real things or imagined ones? I don’t know. Are your dreams real or imagined? You don’t imagine a dream, do you? I don’t know what’s real or what’s imagined when I have a seizure, and to tell you the truth, I don’t care.
All I know is that my seizures are a nice part of my life, a part I love. Seizure trips are as real to me as sitting in this wheelchair right now, remembering, in perfect detail, two months ago when I heard the sounds of the furnace humming and my brother talking on the phone to one of his friends about getting a pizza and a half rack a brewskies. My seizures are as real as my schooling and a lot more sane. Did I mention that I go to school? Oh yeah, absolutely. In fact, it was at school yesterday that I had to face the fact, again, that my dad might be thinking about killing me.
7
Shawn does not grow,
he stays the same....
His arms and legs
are overcooked spaghetti
laced with the bones of dead birds....
Behind his eyes it’s blank
as fog over snow.
School. The retards’ class. Jeez, what a friggin’ zoo. The Severely/Profoundly Handicapped Special Education Program at Shoreline is an amazing piece of work. There are only seven of us kids in the room, along with our teacher, Mrs. Hare, and two teacher’s assistants, Becky and William. William is this incredibly cruel, vicious psychopath with huge hairy arms who tortures us and does terrible things to us whenever we’re alone with him … did that get your attention? I’m just messing with you.
Actually, William is an incredibly nice guy. He’s about fifty and real strong and big. He’s great. Once William accidentally broke my arm when I was falling out of my wheelchair. He grabbed me as I was nose-diving toward the hard tile floor; he didn’t want me to crack my skull, so he grabbed me, catching my arm at the wrong angle. I was in the middle of a seizure when it happened, but I came back into my body pretty fast when that bone snapped. Of course, there was a big-deal Incident Report and William had to answer a lot of questions, but he never treated me any differently than he always had; he was just as nice as always. He’s not afraid of us retards.
Becky is great too. She has red hair, long and soft. She’s only about twenty years old and her body’s gorgeous and she’s super nice. I love it when Becky works with me, especially when she wears a lo
w-cut top and has to bend over to load and unload me from this special standing contraption they put me in a couple hours every day. Her breasts are perfect: round and smooth and big. If I could be William, I’d spend every hour of every workday trying to figure out how to score with Becky. Hell, I’m me and I do that already, but you’d have to figure William would at least have a chance. I mean, he speaks the same language as Becky, and can walk around and smile and do all of those necessary prerequisites to scoring. You’d figure the guy would have at least a chance. But I’ve never seen anything sexy or weird ever going back and forth between them. For some reason that makes me like William even more.
Mrs. Hare is an older teacher lady, little reading glasses hanging on the end of her nose. She always looks like she just got back from a walk on a windy day. She’s nice, patient, a little boring but real caring. I don’t like her quite as much as I like William and Becky, but she does a good job running the show. And what a show it is.
I’m making this all sound normal and sane. Mrs. Hare and William and Becky are fine, but that’s where normalcy and sanity end. The zoo is not like any other schoolroom you’ve ever seen. Although we’re located at Shoreline High School, we’re not really a part of it.
First of all, remember that we students are all retards.
We moan, we drool, we take dumps in our pants. We smack ourselves upside our own heads. We take headlong swan dives into the floor. We eat dirt and eraser dust and hunks of old crayons and chalk, anything, actually, that we can get into our mouths. Those of us who can walk, walk into walls and doors and one another; those of us who can’t walk just sit around “ahhhhhhhhhhhing” all day long. Teachers call this “vocalization.” And when you’ve got half a dozen retarded teenaged vocalizers all “ahhhhhhhhing” at once, the noise is pretty unbelievable.
In order to qualify to be in our class, you have to demonstrate lack of continence, meaning you can’t control your expulsion emulsions; in other words, you’re too messed up to know how to use the bathroom on your own. The smells in the room are pretty amazing; Lysol Meets the Pigpens in Beyond Thunderdome.
I’m pretty sure I’m the only secret genius in our group. Pretty sure. You never know. It probably sounds like I think I’m better than the other retards. Maybe I sound cruel to talk about us the way I do. Well, I absolutely don’t think I’m better. I don’t think there’s some kind of retard ranking, with me on top and all the little stupids below me. I use the word “retard” the way I use any word or words: dolphin, racehorse, sandwich, sidewalk, and apple. Is a dolphin better than a racehorse? A sandwich better than a sidewalk? An apple better than a whatever? Words just stand for the things they are and for what people mean them to stand for. A retard is not a normal person. Putting us in baseball caps and Reebok high-tops and teaching us to connect bolt A to nut B, to count back change, to stack plastic-covered packages of pork chops, none of these things will make us normal. Making us try to copy normal people’s values, habits, hobbies, and traits will not change the fact that we retards are not normal folks. We are different! I call my classmates retards because that’s the word people use when they look at us. Retard means “slow,” but it’s also a word used for a whole class of human beings who are only slow because normal people try to make everybody do things in the same ways and at the same pace. We retards are retards only because normal people call us that.
I actually enjoy the weird irony of the fact that I’m considered the dumbest kid in my retard class. Most of the others can talk a little, some walk a little. All but me communicate at least a little bit. One guy, Jimmy, walks around saying “honey” all the time. Several kids are able to ask for cookies. Another guy, Alan, constantly grabs his crotch and says “winky” over and over.
Our classroom looks like a torture chamber or a weirdo’s playpen. Of course there’s all the useless standard school crap: pictures of presidents, big alphabet letters, maps, a chalkboard, a closet, a Kleenex box. But if you look a little closer, you can’t help but notice the number of leather straps on odd, rack-looking wooden contraptions, soft cords (used to hold us kids in place), some beanbag chairs, a large couch mysteriously stained, and a wide variety of bizarre objects used for “educational purposes.”
My school. And darned proud of it. Fight on, you mighty Spartans! Fight on! Rah! Rah! Rah!
I was having a pretty good morning yesterday until my dad showed up with a video cameraman from Channel 7, the local PBS station.
Although I’m sure my dad would have preferred to talk with Becky, he walked into the room and over to Mrs. Hare. He introduced himself and they chatted. It looked like Mrs. Hare had been expecting them. She smiled and he smiled and my classmates and I drooled.
The tall cameraman guy with a beard, who had come in with Dad, began setting up his video camera. Dad glanced around the room, then started a little “Testing, one, two, three … testing one, two, three” routine into his microphone. He walked over to me and patted my head, then bent over and kissed my cheek.
“Is that where you wanna shoot?” the cameraman asked.
“Sure,” Dad answered.
“Is our sound right?” the cameraman asked.
“Yep,” my dad answered.
“We’re rolling,” the cameraman said.
“Okay,” Dad said; then he took a deep breath.
“Hello,” he said, holding the microphone in front of him, looking straight into the camera. “I’m Sydney McDaniel, and this is my son Shawn. Shawn is profoundly developmentally disabled. I’m here with him today at his school. You might not be aware of it, but your tax dollars, to the tune of thirty-five thousand dollars a year in services, staffing, special equipment, and a wide variety of additional expenses, are used to support each and every uneducable child, like Shawn, in programs designed to educate the uneducable. That’s thirty-five thousand dollars per child, per year, year in and year out. If ‘educating the uneducable’ sounds just a little too paradoxical to you, well that’s exactly why we’re here today, at Shoreline High School. We’ve come to visit my son and honestly examine just what your money is buying.”
I sat listening to and remembering Dad’s words; in the background I could hear “winky, winky, winky” and “ahhhhhhhhhh,” and, “honey … honey … honey.” William came into my sight, and he looked angry.
Dad continued, “While none of us would disagree with the noble intentions of the State Department of Education, and the Seattle Public School District, that each and every child deserves an education designed to help that child achieve his or her greatest level of accomplishment and potential, the fact is that our schools, your schools, are paying hundreds of thousands of dollars a year making sure that children who simply cannot learn are being ‘taught.’ Why do we teach children who cannot learn? Is it really worth the allocation of resources presently deployed to help a fourteen-year-old kid master tying his shoes and spelling ‘cat,’ when such tasks require hundreds and hundreds of hours of individual teacher time? And, even worse, how exactly do we justify the price we pay in energy and resources for a child like Shawn, who will never tie his own shoes or speak or understand the word ‘cat,’ much less spell it?”
You have to agree, Dad made some interesting points. Why educate the uneducable? Why even try? Remember, in the eyes of the world, based on proven scientific methods for judging such things, I’m an idiot. A moron. A celery stalk. A chunk o’ granite. My classmates aren’t exactly on track for careers in nuclear physics or brain surgery either.
My dad turned slowly toward me, then gazed back into the camera. “If we cannot educate kids because they are uneducable, and we will not simply warehouse them in shoddy group homes or huge, impersonal, neglect-prone institutions, doesn’t it ask the question, ‘What do we do?’ I wish I had a simple answer for such questions. We all wish we had simple answers to our complex questions. Yet the truth is there are no simple answers—there are only complex answers to complex ques …”
Right there was when my seizu
re hit.
It came on right when my dad and me were in front of the camera looking all cozy-lovey father and son like, right then—crackle-crackle-crackle-swoosh—red light, blue light, bluer light—idiot laughter—muscle contractions—slow spin of the room—spirit rising out of my body.
And while I don’t usually remember many details of “reality” during seizure times, I do remember parts of this one.
Dad stopped talking when he heard me laughing. He turned, looked in my eyes, saw the seizure grabbing me. Of course I felt happy, as I always am when a seizure hits, but I caught glimpses of his face, his mood, as I drifted away. He looked sad and disappointed. Because I was having a seizure, I couldn’t make out all of what he said, but bits of his speech came through: “And what of our children who suffer unbearable pain …” “doesn’t to love them …” “if we really love that child …” “shouldn’t we …” “and if …” “no hope …” “shouldn’t …” “someone …” “end his pain?”
My spirit floated near my dad and me. I listened as well as I could, trying to pay attention. But in another moment my spirit was unable to resist the temptation to cruise over and nuzzle Becky’s breasts, to lick the vanilla cookies in the open bag on Mrs. Hare’s desk, to soar out to the playground and play slalom between the posts of the swings and the metal poles of the basketball backboards.
I know, I know, I’m irresponsible. I should have tried to stick around and listen to the rest of Dad’s PBS special on retards and educableness and “Appropriate Allocation Decisions in an Era of Diminishing Funding.” I should have stuck around. So sue me. Hell, I’m fourteen years old! For some reason, flying and slaloming and cookie licking and breast nuzzling just felt like a much better—what?—utilization of my resources.
When I came back into my body, Dad and the cameraman were already packing up their gear. The show was over. I felt a little bad about missing it all. And then I remembered what my dad had said: “end his pain....”
Stuck in Neutral Page 3
