Miracle Boy Grows Up Read Online Free PDF Page B

because it’s too much trouble to change my mind. There’s no surprising my parents!
    What’s more, my entire wardrobe is memorized so I can name clothes without looking in my drawers. I’m dressed in bed, before getting to my chair, and it’s impossible to see into my drawers from there.
    Inevitably, a certain rigidity settles in. Spontaneity becomes a forbidden luxury, even spontaneity in peeing. My life soon feels overrun with orderliness and rationed efforts. I’m always required to articulate my wishes and needs, can’t just act on them. I’m forced to plan ahead. And I internalize this self-discipline with near-military precision. Disability is my boot camp. Impulsiveness is drained out of me. Without realizing, I come to depend on precedent—whatever worked before should work again—because I can’t trust in winging it.
    ***
    I n third grade, one of my extra special friends invites me to her apartment to play. A smart, petite girl with long, thick black hair, Joanie lives only a few blocks away. Her mom comes to escort us. Which means she’s going to push my wheelchair on the sidewalk—but first, down the school steps. Joanie’s mom doesn’t look physically strong, yet I bravely give her instructions. I can feel her hands shake as she clutches the handlebars of my wheelchair.
    One step at a time.
    We get almost all the way down without incident … until she slips. I fly out of her hands and bound down the hard marble stairway— k’bump-k’bump!
    I hit the bottom facedown, my chin on the lowest step, my wheelchair on top of me.
    Mr. Martinez, the school’s muscular and jovial maintenance man, is there, leaning over me, trying to pull me up. It’s hard to talk with my chin pressed against the bottom step, but I know words are my strongest asset and best defense. Mom has drilled that into me over the years. Speak up! People aren’t mind readers!
    I manage to say, “Open the seat belt first.”
    The only Walden staffer not called by his first name, oddly enough, Mr. Martinez bends down to make sure he understands. I can smell his sweet cologne, and I’m grateful. It’s important he understand me. If he pulls the wheelchair up without unbuckling me first, I’ll twist an ankle.
    He reaches under me to unfasten the belt. Released from the chair, I slide into a slightly more comfortable position on the floor. He is then able to lift me bodily—like a groom carrying his bride over the threshold—without twisting my ankle, and carry me up the steps to a sofa in the school office. Someone else brings my chair.
    The school nurse looks me over, calls Mom. Joanie and her mom stay near. I’m in no pain, but the wait for Mom seems very long.
    Finally she’s there. The play date is canceled. No other harm done.
    You become used to wheelchair accidents.
    The next time Joanie and I get together it’s at my apartment. By now we’re considered boyfriend and girlfriend. When no one else is around, we decide to undress. So, under the pretext of needing a nap, I ask Inez, our housekeeper, to lift me out of my wheelchair and put me in bed. Once she’s gone, Joanie closes the door and I instruct her how to open my jeans. She knows how, of course, but needs encouragement. “I can’t unbutton them myself,” I explain matter-of-factly.
    She insists on going first, and begins to lower her jeans and underpants. I try to look but can’t—I’m not sure what I see. Then it’s my turn. To my surprise she says no. Fearing she’s merely being bashful about helping me, I try my usual brand of reassurance. “You can do it. It won’t hurt or anything.”
    I don’t think about the implications of her actually touching me. We’re just having fun, sharing. She continues to say no and I give up. Inez puts me back in my chair and we play ordinary board games. But it’s clear: I’m not going to let my handicap get in the way of my romantic life any more than I let it detour my education or anything else.
    It’s a