I’d heard that phrase not so long ago, that day with the crow. At that time it had made me nervous, but I’d tried to forget about it. Now, hearing it again so soon, I got the picture.
In another few moments Dad walked away, toward the door. As he reached for the door handle, he glanced back over his shoulder one final time. I happened to be looking directly at him. There was something in his expression that I’d never seen before, a look in his eyes that I can’t describe. All I know is that I felt a chill, as though a sudden gust of cold air were blowing through the room.
End my pain? It made me mad. What right does he have to decide what’s best for me? What right does he have to think about ending my pain? He’s never even around me! Dad is only talking now, but how long before he does more than just talk?
8
I say,
why is this happening to us?
Lindy shifts Shawn in her lap,
slides her fingers across his cheek,
gently as soft breathing.
She doesn’t answer.
We sit in silence
and we wait.
I barely remember when Dad left our family. I wasn’t quite four years old, but I remember the last time he ever fed me, and that was the same week he left us.
“Damn,” Dad yelled as I coughed a mouthful of rice and mashed vegetables into his face. He was feeding me my lunch.
Mom was doing dishes.
“I can’t get used to this,” Dad hollered as he wiped my spit and bits of food off his face. “I’d expect it from a baby! But you’re a little … Damn it!” he yelled again, throwing the spoon across the kitchen into the wall.
“Hey,” Mom said.
Dad’s hands trembled as he looked at her.
“I’m sorry,” he said, his voice tired and sad.
Silence then.
Mom said, “I know, babe, I understand. We just have to try and remember it’s not his fault.”
“It’s not him I’m mad at,” Dad said. “It’s that damn screwed-up part of him, that stuff he can’t help but is all we ever see! Maybe it’s God I’m hating so much.”
Mom stared at Dad from across the room, her face full of sadness.
Dad said, “Why does he have to be so totally messed up? Why does God have to make him such a total wreck?”
“It’s not God,” Mom said softly. “You don’t believe in God anyway, but if you did, you’d know it’s not God. It’s just the way things happen sometimes.”
“I know,” Dad said, his voice low and tired, “but I can’t do this anymore. I can’t stand this.”
Mom looked at Dad for another moment, then turned away. “I don’t want to hear it,” she said, mad, low, and icy. Dad just sat there.
I also remember one time when I heard my mom talking about Dad’s leaving. Mom sat with her friend Connie. They drank coffee at the little dining area just off our kitchen. I sat in my wheelchair in my usual spot next to the window overlooking Puget Sound. It was a pretty day, blue sky and a clear view of the Olympic Mountains far across the water.
Mom sounded very sad. “I understand him,” she said, talking about my dad. “I know what he went through over Shawn. The thing that kills him is not knowing whether Shawn is aware or not. The doctors have assured us, a thousand times, that it’s almost impossible that Shawn could have any awareness, but it’s that ‘almost’ that makes it intolerable for Syd.”
Connie said gently, “I still don’t think that gave him a right to leave you guys.”
My mom looked down into her coffee cup. “No,” she said. “It sure didn’t. He’s weak and cowardly. Sometimes I hate him. But I know, too, that he just can’t stand seeing Shawn suffer with the seizures. Syd can’t stand the thought that Shawn might be trapped inside himself.”
Even before Dad won a Pulitzer for “Shawn,” he’d won awards. His books of poems, writings in newspapers and magazines, and teaching literature at the college where he used to work made him seem smart to me. Does he know something that I don’t about dying? Would he kill me without being sure it was the right thing to do? Knowing that my dad loves me makes everything even more confusing.
Not that it’s important, but my dad and I both have double-jointed thumbs. We can bend them backward, at an odd angle, so they look as if they’ve been broken by a mafioso enforcer. Neither Paul nor Cindy can bend their thumbs backward like that, but I can. Actually, when I say I can bend my thumbs, what I mean is that on those few times when Dad comes to visit, he always takes my hands and gently bends my thumbs back, so they look broken and weird. Then he puts his thumbs like that. I can’t control the muscles of my own thumbs, of course, but Dad holds them at that strange right angle; then, while he’s holding my thumbs like that, he bends his own back too. Our hands, except for the difference in size, look like the paws of mutant monkey twins, half human, half deformed. It’s funny. I’ve watched Dad’s face come into focus sometimes in the middle of this little ritual, and it’s always seemed that it’s then that he feels closest to me. Sometimes he laughs sadly, a real small laugh. And right then I feel most loved by him.
I almost trust Dad to do what’s best. I almost trust him to know whether “ending” my “pain” would be the right thing to do. Almost.
9
Inside my chest,
where my heart should be,
a ghost bird
is flying into a terrible wind,
a frozen winter wind,
and its eye is covered in ice,
and it has no voice,
and it is fading out of itself;
falling and falling.
Cindy’s sleepovers with her girl friends are one of the few places where invisibility has advantages. Being a total retard and not being able to communicate has presented certain drawbacks when it comes to securing a close, intimate relationship with a girl. In fact, in case you couldn’t figure this one out on your own, it’s made it completely impossible. Nope, I’m never gonna score with the ladies, that’s for sure. But like I said, invisibility has some advantages.
After a little while of being with me, people begin to forget I’m there. First they look past me, then around me, and eventually right through me. I become invisible.
However, every dark cloud, as they say—you wouldn’t believe the stuff teenage girls talk about when they think no guys are around to hear. And because I can’t tattle, and because they think I’m a vegetable anyway, they don’t think of me as a guy. Actually I’m pretty sure they don’t think about me much at all.
There they are, bouncing around in their bras and panties and changing clothes right in front of me in the family room. Not really “right in front of me,” but from where my wheelchair is parked, near the window in the kitchen, when my eyes happen to turn that direction, I have a perfect view into the family room. Our big-screen TV, the CD player and stereo, and a couple of big couches are in there, so that’s the room where Cindy and her friends usually camp out for the night. The way our house is set up, although I’m in a different room altogether, I’m only about fifteen feet away from them. I can hear all but their most private, softly whispered secrets. And when my eyes are willing, I can watch them.
Tonight Cindy has a new friend over for the first time. She’s come for a sleepover. Most of Cindy’s friends are pretty cute. But none come close to being as pretty as this girl is. She is tall, and she has blondish-brown hair and an amazingly attractive body. Her face looks like one of those women in Maxfield Parrish paintings (Mom has a couple prints in her room). God, she’s beautiful.
When people first meet me, they usually do their Annie-Sullivan-meeting-Helen-Keller-in-The Miracle Worker routine.
“HI SHAWN, NICE TO MEET YOU.... MY NAME IS ALLY WILLIAMSON.... HOW ARE YOU?” For some reason people always speak real slowly and real loudly when they’re introduced to me. Usually it bugs me. Not with Ally Williamson, though. She’s so perfect!
Cindy says, “He doesn’t talk.”
Ally answers, “Oh.
Well … does he … understand … does he know what I’m saying?”
Cindy says, “Not really.”
Ally turns back to me. “HI ANYWAY, SHAWN. HAVE A NICE DAY.”
Looking at Ally, listening to her, my stomach aches and is warm and safe all at once. My palms are sweaty. My chest, my heart, all my insides feel hot and tingling. I won’t even start to describe some of the other parts of my body—other than to say that I feel better than I’ve ever felt. I feel dizzy.
Two hours pass and I’m in bed in my room, thinking about girls in general and Ally Williamson in particular. My bed is an oversize crib with wooden rails to keep me from falling out onto the floor.
I can’t hear Cindy or Ally talking anymore and the TV is silent, so I’m pretty sure they are already asleep in the family room. It feels late; the whole house is quiet. A soft breeze blows some branches against my window. Even in the darkness, I can “see” my room. Above my head a cardboard African animal mobile hangs over my bed. This “stimulation” piece was installed before I could remember anything, which means before I turned four. My dad may have put it here. How many times have I looked up at that giraffe, tiger, lion, parrot, zebra, and hippopotamus? How many times? Well to give you some idea: The giraffe has a total of 76 spots on his body from the tip of his ears to the bottom of his hooves; the zebra, 38 stripes; the tiger, 23. The lion shows six teeth and has 122 visible brush strokes making up the long, tan hairs in his mane; the hippo shows only eight teeth in his huge, gaping mouth; the little bird perched on the hippo’s ass has four yellow-tipped feathers on its wings. I could go on. The point is I’ve put in a lot of lying-here-staring-at-the-mobile time in my life. Even through the dark I can “see” all the mobile’s features.
Finally, unable to hold off any longer, I feel myself starting to drift toward sleep.
My bedroom, despite being black already, turns darker still. The room begins to swallow me, like it does every night. My immobile mobile hangs in the stillness; my plastic foot brace jobbies that I wear to keep my feet and ankles less spazzed out lie on the floor; soon all of the room and everything in it fades into the darkness.
As sleep takes me, I begin to dream. In my dream I take a deep breath, and I have complete control of my body; it’s similar to the feeling I have when I’m in a seizure.
I dream about Ally. I am alone with her and we begin to kiss. It feels great. Even though we don’t know each other, somehow we’re in love. I wonder where we are; the room doesn’t seem familiar. I think about where I’d like to be, and an instant later we are sitting on the top of the Space Needle in downtown Seattle, six hundred feet above the city. Our legs dangle over the side. We face east, looking out past the hills leading up to the mountains. The sun is rising over the tallest peaks of the Cascades. The horizon, the huge length of it, is blazing in pink, red, and orange. The mountains look purple and blue, the snow tinted by the colors. There is such a huge feeling to this sunrise, like all the universe spreads out from the light, and the entire universe looks back toward it.
“God, this is beautiful,” Ally says.
We sit holding each other, the morning’s first light covering us.
Ally whispers again, “It’s so beautiful.”
“I love you,” I say to Ally. She is the first girl I’ve ever said these words to. And even though I’m only a kid, even though I’m young and inexperienced and I know it would sound stupid and corny, I almost add, “Darling.”
“I love you too,” Ally whispers back; then she pulls herself close to me. It feels as though we are blending together, I can’t tell where I end and she begins. Then Ally says, “I love you, my darling.”
Suddenly, even though I know that I am only dreaming, I feel so loving, I feel so loved, that I begin to cry.
When I wake up, there is a fly on my face. I can feel its tiny feet moving across my cheek. It is looking up my nose. Every few moments its wings lift it off me and I think it’s going to go away, but quickly it returns. Of course, there is nothing I can do about it. I can’t move my head or my hands to shake it off or swat it. I can’t holler for help. This has happened a lot of times before and I really hate it. All I can do is lie here and try to think other thoughts. I focus on last night.
I can’t remember exactly how or when my dream of being with Ally ended. I had started to cry—dream crying, not real tears. She had held me close to her, dream holding, not our real bodies.
The next thing I knew, it was morning, and I was waking up in my bed: real self, real body, real breathing. I was lying here quietly, relaxed and fantasizing, when this damn fly arrived. As it rises from me, I can see its bulbous blue eyes, hear the annoying, torturous buzzzz of its wings. Then I feel it land again, crossing my face, over my cheek, onto my lips, pausing at the corners of my mouth. Is it feeding? Laying eggs? Soon it wanders up into my eye; I blink, an involuntary but appreciated reflex.
Dreaming about Ally, about being with her, was wonderful. Before last night, when I’d think about Dad killing me, my fears were based on what I guess everybody fears about death, just not knowing what’s coming next. Before last night, I only worried that there might not be life after we die. Of all people I guess I should know, because of my spirit travels, that we are more than just our bodies and our brains. I should believe that we have souls. Yet I’m still not sure. Before, it didn’t matter so much if Dad’s deciding to kill me might stop everything. Now, for some reason it matters a lot! If feeling the way I felt with Ally is this nice, how many other wonderful things might I still get to feel someday?
I can’t stop thinking about love. I’ve never been in love before. I know my mom and dad love me. They’re required to by all the rules of doing the right thing. They love me, but they don’t really know me, and they never will. They can’t. If it hadn’t been for me, Mom and Dad might have stayed together. I think about Cindy and Paul. It’s the same thing for them; I’m sure they love me, but how can they not feel resentment, toward me? I ruined our family. Whatever their feelings, they don’t know me; they’ve never known me. For the first time in my life I’m thinking about being loved and being known somehow going together. What if somehow, some way, I could get somebody to love me and know me? What if there is a way that I could let somebody know that I am smart and that I like my life and that I don’t want to die!
If my dad walked into this room right now and killed me, no one would ever know what I was really like. I want to love someone, and feel loved in return, for my real self. What if someone loved me enough to somehow break through and discover that I’m inside this body? That I am in here? Maybe that person could tell my dad what my world is really like and that I’m not in any pain. Aside from everything else, if I were loved enough to be truly known, maybe that could save my life?
10
Something is happening;
Lindy won’t look at me,
and I can’t look at myself....
Words,
once real as firewood or concrete …
become meringue of dust.
Breakfast time. When I eat, I know that it’s not a very pretty sight. It’s the same every morning. Mom pulls up the kitchen chair she always sits in when she feeds me and places my bath towel–size “bib” around my neck. Then she scoops oatmeal into an ancient green plastic Teenage Mutant Ninja Turtles bowl (Donatello). She always uses this bowl, I think because she can hold it by the turtle’s head up close to my face and spoon the mush into my mouth.
Putting food in my mouth is only the first step to feeding me. I can’t voluntarily swallow, so we have to wait for my swallowing reflex to kick in. Because of this, half the food oozes back out before any of it goes down. Mom has fed me practically every meal I’ve ever eaten, so she’s an expert. She shovels a spoonful in, then leaves the spoon under my lower lip, resting it lightly on my chin until half the food slides back out, then she spoons it in again, repeating the procedure as many times as it takes until my body manages to swallow. Then I get the next spoonful.
It takes a while to feed me. I cough and spit a lot too, spraying my meals, like that time with my dad. I know I must look terrible. I’m glad Ally left before I got up.
This morning Mom seems distracted. She lets more oatmeal than usual slide out of my mouth and down onto the bib. She keeps running her fingers gently across my chin, wiping away the drooled cereal. There is something in her expression, something in her eyes, that tells me something is wrong.
When I’m done eating, after Mom has gone to the bathroom and washed the sticky oatmeal off her hands, she comes back into the kitchen and calls for Cindy and Paul, who are both upstairs.
“Yo,” Paul calls back.
Cindy doesn’t answer.
“Cindy!” Mom calls again, louder.
“What?” Cindy answers.
Mom says, “I need you both down here for a second.”
Mom stands leaning against the wall between the kitchen and the family room. I happen to be looking at her. She looks pretty. Even though she’s forty-five years old, she looks good. Mom’s real name is Linda, but my dad gave her the nickname Lindy back before they were even married. It’s stuck with her ever since. Watching Mom standing there, I remember so many things about her: I remember every soft word she’s ever whispered in my ear, every gentle, silly lullaby, each and every time I’ve come back after a seizure to find myself cradled in her arms. If I had to name a single reason why I’ve been as happy as I’ve been, I know that it would be my certainty of Mom’s love for me, love that’s absolute, rock solid. Yet right now, at this moment, I think about Ally and how much I’d like to have a girlfriend. I even wonder what it would be like to love someone else more than I love my mom. I know that the secret to happiness is love, to be loved the way Mom has always loved me, and to love back the way I’ve loved her. Yet now, somehow, I think about a new meaning for love, something even bigger.
Cindy and Paul show up together, coming into the family room, pushing and teasing.
Stuck in Neutral Page 4
