us,
and Eve needed me, I could rise to it, and nothing frightened or disgusted me.
But once we were home, I started to feel jittery again. With the parents
around, I felt there were things I wasn’t supposed to do, wasn’t supposed to
know. There was everything no one was saying, and it kind of clogged the air.
Eve was wearing
a white nightgown, and her face seemed to glow with a health that had the effect
of making the rest of her appear even more oddly proportioned, with her right
shoulder sloping down to her withered arm.
I changed in her
bathroom into a t-shirt and shorts. In the old days, I’d have changed in front
of her, but I used the fact that her room was crowded with the metal hospital
bed as an excuse to leave the room. I felt like there was something wrong,
something cruel about revealing my body to her, though we’d been to the beach
just that afternoon. Her room was for a sick body, and mine, though far from
perfect, wasn’t sick.
I climbed up on
the bed beside her - two typical teenage girls having a sleepover. Aside from
her bed, the rest of her bedroom was the same as ever - the dresser with the
gold trim she must have picked out in her Disney princess stage and never
replaced, the white-painted vanity with the lighted mirror for putting on
make-up. I guessed she sometimes still wheeled herself up to that mirror,
though what she thought when she sat there, I could only imagine. I wondered if
she cursed at her reflection. Or wept. Or maybe, the face that was half dead
was something else to her now. Maybe it represented whatever force it was that
made crap-things like ALS happen to people. Maybe her own face had become, in a
sense, like the face of God. Unknowable. Inexplicable. Maybe she sat and stared
at herself and wanted to run. Maybe every part of her that could still move
froze. Maybe her heart beat the wild beat of an emergency. Those moments, if
she had them, must have been like waking versions of my nightmares. The thought
made my throat feel tight like it did when I woke up from one of my dreams. I
had to struggle to keep from making any sounds. I felt a sob rising in my
throat. But then Eve started to speak, and I pulled myself out of my own
thoughts and turned to her.
“It feels kind
of strange to be back here, “ she said. “Like we were gone so much longer than
a day.” She sounded weary.
“Yeah, I said.
That was pretty intense.”
“You know, I
must be really exhausted, Andy, because I can barely move my head.”
“I know what you
mean,” I said. “I think it’s from the sunburn.”
“No, “ she said.
“I mean I can’t move my neck very well. It feels weak.” Her voice sounded small
beside me, with an uncharacteristic tone to it, something like a whine, like
self-pity. I remembered how she’d been holding herself since I’d gone to see
her earlier in the week, her head at a slight angle.
“Eve?” I said.
“You’re just real tired.” It didn’t happen that way, I wanted to say, you don’t
just lose a whole body part like that in one day. My heart started to pound.
Maybe I had helped speed this thing up? Maybe taking her to the beach had been
the wrong thing to do?
“I am really
exhausted, “ she said, and I started to relax again. Her voice sounded calm.
Maybe the beach trip was worth it, whatever the cost. “You know, I wish my mom
had let me get highlights.” She paused for a second. “My hair didn’t get light
at all this summer.” She said this as if she hadn’t spent the summer in
hospital rooms - as if not getting highlights stood for so many other missed
opportunities - vain, girlish moments that she had every right to.
“It’s so pretty,
though, I said. It’s nice and sort of golden against your skin.” I opened my
eyes, and she was looking right at me, and she smiled, her small half-smile.
“Thanks,” she
whispered. I could feel her warm breath against my face. I knew she wasn’t just
thanking me for the compliment, but for the whole