Stuck in Neutral (3 page)

Mom finally came back onto the deck after she was through on the phone.

“That was for Paul,” she said to Dad; then, looking at him, she asked, “Are you all right?”

“No,” Dad said quietly, “not exactly. No, I'm not all right at all.”

Mom and Dad kept talking. Mom never asked about her iced tea; Dad never mentioned the crow.

But as I listened to them visiting, I knew that my dad
does
love me. It's just my condition that freaks him out, that and my seizure thing.

Did I mention that I have
grand mal
seizures, anywhere from half a dozen to about a dozen every day? Ever since I was born I've had them. When my dad said that thing about ending my pain, he must have meant my seizures. When I was little, they were painful and hard to live with. A big seizure just kind of grabs the inside of your skull and squeezes. It feels as if it's twisting and turning your brain all up and down and inside out. Have you ever heard a washing machine suddenly flip into that
bang-bang-bang
sound when it gets out of balance, or a chain saw when the chain breaks and gets caught up in the gears, or an animal, like a cat, screeching in pain? Those are what seizures felt like when I was little. When I first started having them, I felt like a machine breaking or an animal with my guts spilling out. When I was young, my seizures were really terrible.

And it was back then, when I was little and the seizures were so bad, that my dad was still around. He used to see me having seizures, hold me while I spazzed out, twisted up, jerked all around, and screamed. I remember when I was about four years old, in the month or so before he left our family, I'd see his face after I'd come back from a seizure and he'd be holding me and his eyes would be so sad-looking. He couldn't stand to see me go through pain. He couldn't bear it. He still can't. But I think it's getting worse. It's like he's going to explode just like that glass did. This incident last week with the crow is the first time I've ever seen Dad act like that. It's so out of character for him, for how I see him and for how the world sees him.

In ways Dad is nothing like he appears to be on all those TV talk shows, and in other ways he's exactly like he seems on them, sincere and smart and compassionate. The truth is that my dad is a complete jerk and a great guy: He is ugly and handsome, charming and cruel, funny and angry. My dad is your basic, slightly smarter than most, human being. He comes fully equipped with a lot of the best and worst stuff available on most models.

My dad is Sydney E. McDaniel. You've probably heard of him, and if you haven't, you've been neglecting your basic daily requirement of TV yap-crap. You know, talk shows. Sydney E. McDaniel: Does Pulitzer Prize ring a bell? Yeah,
that
Sydney E. McDaniel—the one who wrote the poem about him and me that won him a Pulitzer.

Lindy felt the early tugs,

Her womb becoming tidal and loud,

the fetus, turning, crying out—

a tiny beast, a braying sigh
.

He calls to her. He calls to her …

I dream hard the dream of knowing him,

this baby boy coming to us....

A single bird, small, leaps inside my chest,

turning to pure spirit, to pure joy as we watch, crying
.

Shawn, he becomes Shawn now,

and that bird inside me wings free too,

wings, wings its way inside me
.

I
love the beginning of Dad's poem. What's not
to love? Who wouldn't enjoy being a witness at his own birth? I love the sound of his words. And I love, most of all, how happy and excited my dad was, how grateful and full of hope at the moment when I arrived. Of course, that's just the start of the poem. Everything soon changed.

Basically, the poem tells about how Dad was never able to deal with my condition; with the “pain” he thinks I experience during my seizures. That's probably one of the reasons he thinks it's all right, even necessary, to kill me. Another is that he thinks I'm a veg.

God, I've always loved that “veg” thing. You've all said it; you know you have. So-and-So is “just a vegetable.” The first couple times I heard people saying that, I couldn't figure out what they were talking about. Humans turning into vegetables? It sounded like a horror movie. I wondered, Exactly what kind of vegetables were the people becoming? If it was a redheaded guy, did he turn into a carrot? If it was a cranky Republican lady, did she become a turnip? A gay person into a pink grapefruit? And what kind of people became avocados? Zucchini? Summer squash?

In my father's eyes if I'm a vegetable, a human vegetable, I'll never be able to “enjoy life” or “be productive.” I'll never be able to win a Pulitzer Prize, go on talk shows, meet the pope, or have lunch at the White House. I'll never be in
People
magazine, with a three-page story about my life. I'll never attend the Academy Awards, or have dinner with Clint Eastwood, or be hired to write and narrate a documentary on the tragic plight of orphaned children in Romania. I'll never be able to do any of the stuff that Sydney E. McDaniel has gotten to do. So what's the point of my being here if I can't be like him?

This makes it sound like the only reasons my dad would kill me are selfish ones. Honestly, I don't believe that. Dad wants to kill me to save me from suffering. He's afraid I'm trapped and in pain. He wants to kill me because he loves me.

He's enjoyed the success he's had, but it hasn't helped him forget that he's my dad and, therefore, responsible for me. “Shawn,” the story-poem, has done just the opposite of helping him “get over” me. Think about it: Dad's fame has made him a professional victim of our relationship; his “pain” over me is the foundation of his career.

If you could hear my dad read the poem aloud, like I have, you'd understand.

I attended the premier reading two years ago at the Kendell mansion. The building used to be a kind of power station back in the old days when Seattle had electric trolley cars. The Kendells bought the place from the city years ago, pumped a couple hundred grand into it, and
voilà!
They had a mansion with 60-foot ceilings and 14,800 square feet of space. I overheard Mom telling Cindy and Paul that Mary Kendell had long been a supporter of the Seattle arts scene, and that as a friend of Dad's publisher, she offered her home for Dad's reading.

I'm sure my mom didn't want to go, but I guess she felt she had to. Dad had already read the poem to her in our kitchen earlier in the week. I had been in my bedroom, two rooms away, and able to hear only parts of it and then the sounds of them crying afterward. Maybe Mom thought she owed it to Dad to be there at that first public reading. She dressed up that night in a classy, pretty black dress and pearls. She looked beautiful. Unfortunately, she dressed me in dark slacks, running shoes (I can't even walk), a white shirt, a blue blazer and a god-awful, ridiculous
red bow tie
. Geez! I looked like Bing-Bong the Idiot Puppet-Boy.

When the reading started, I got parked in the kitchen in my wheelchair, out of eyeshot of an audience of two hundred of Seattle's artsy-fartsiest folks.

When Dad finished reading, an explosion of applause filled the room. All through the poem I'd heard people crying and blowing their noses, but the volume of applause at the end felt amazingly loud. I jerked in my chair (brain-stem reflex) so sharply that the young waiter who'd been serving hors d'oeuvres and wine before the reading flinched in his chair next to mine. He glanced at me, and my eyes focused on his face. He was handsome and kind-looking, with dark skin and black eyes. I could tell he knew that I was the kid in the poem and that he felt sorry for me.

I remember wishing at that time that I could be him, anonymous and quiet, in charge of my own life. But no sooner had the applause begun to quiet down than here came my mom, her eyes and nose all red. She walked to the back of my wheelchair and rolled me into the living room. Everyone applauded again. Then all these strangers began to come up to me and pat my shoulders and head and back. They all smiled at me, Bing-Bong in my drool-encrusted red bow tie.

The whole scene felt terrible. Being celebrated for something you are not, being completely misunderstood by people who think they're being understanding, is awful. The people who approached me that evening may have meant well, but they were annoying. The only part of it I liked was the one lady with huge breasts, wearing a low-cut red dress. She leaned over me, her boobs almost falling out, her hands touching my face and her voice cooing. I wanted her to stay right there—my eyes even cooperated for a change—but soon she stood up and went on her way. Most of the rest of the strangers surrounded me and talked about me as though I weren't there, and for them I actually wasn't. The me they talked about, the Shawn in the poem, is not the real me, not even the me my family knows. The kid in the poem is just some cute little redheaded retard named Shawn from my dad's imagination. The Shawn in the poem, my father's version of me, is a paper-thin, imaginary Shawn, a two-dimensional version of Dad's worst fears. It's one thing not to be known for who I actually am, but to be known for who I've never been by a roomful of strangers was the worst.

For all my irritation at the “world premier,” I liked, and still like, my dad's poem. I think it is an honest report of what happened to us. I hate to admit it, but I actually like my dad's descriptions of me as a little boy; I sound pretty cute in a gimped-out, C.P. way. I also like seeing my mom and dad together again, even though it's just words in the air from a time long ago. I like a lot of other things about the poem, too. If I'm being honest, and even though I don't like people staring at me, I do like everybody saying my name. I guess I have to admit it, I kind of enjoy being famous.

When the Pulitzer came, I got a kick out of seeing my picture from the book's cover on TV all the time. My dad appeared on twenty-three TV talk shows, news reports, and other programs in the eighteen months following the announcement of the award. It's pretty weird being the country's most famous retard when, with my memory, I bet I'm actually one of the smartest kids anywhere.

My dad, after writing “Shawn,” became pretty famous. But the fact is that the poem just made him a professional—what? Victim? Whiner? Abandoning deadbeat dad? Dad left our family because he couldn't stand watching my seizures. Shows what he knows! Did I mention that I love my seizures? That they're doorways to a place at least as real and far better than “reality”? Did I mention that I
love
my seizures? So much for the Pulitzer Prize—just because you win it doesn't mean you know everything.

As days become a week

and the week draws into a fortnight,

Lindy's mother is holding Shawn

when she sees a movement in his eyes....

I take him into my arms,

stare into his face
.

In his eyes there is a quivering,

a strange crackling
.

I hold him close....

Everything that was ever going to be,

everything that was going to become,

begins a slow unraveling
.

I
f you saw me having a seizure, you'd swear I was
in pain. Maybe part of me is. But the truth is that as much as I love my mom and sister, my brother and father, I'd trade their lives in a heartbeat if it meant keeping my seizures. That sounds terrible, but I can't imagine my life without the wonders of having seizures.

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.