Secret for a Song (4 page)

T
hree
weeks later, I was on the verge of giving up. I’d been in to see Dr. Stone
several times, and each time I’d reported that volunteering was going “fine”
and really meant it. Shelly hadn’t left me alone once. She hadn’t looked the
other way or forgotten about me. I’d been made to sign in and out every time I
went, which was almost every day.

Then,
finally, it happened, like a cloudburst out of nowhere. Betty, the woman at the
front desk, waved, trying to get my attention when I walked in the double doors.
I went up to her, unsure.

Moving
papers around on her desk, pink nails shining under the lights, she said, “You’re
Saylor, right?” She obviously didn’t remember speaking with me the day I’d
begun to volunteer.

“Yes.”

“Shelly’s
at a conference this week and Linda’s absolutely swamped, so she wanted me to
give you this.” Pulling a clipboard out from under a pile of forms, Betty set
it in front of me. “Just sign in and then sign out when you leave, okay?”

I
smiled, my head beginning to buzz from the anticipation of freedom. “Okay.” Here
it was, the payoff, the reason I’d put in all those hours listening to people
talk about illness and disease and death. It was my turn now.

After
I scrawled my name, I hurried downstairs, my badge thumping faintly against my
body with every step. I had a pounding headache from the fever, thanks to the
growing abscesses on my chest. It didn’t matter much. I was already planning
how I’d gain access to the clinical areas of the hospital. Obviously, I
couldn’t do it today. It was the first day I wasn’t being constantly
supervised, and Linda might decide to check up on me. If Shelly was gone this
entire week, I’d probably have more opportunities.

I
went to the bulletin board to check which group was supposed to be coming in, but
all it said was
TIDD
. Pulling my hoodie close against the chill in the
air, I sauntered down the hallway. I still had some time to kill before the
group got here. I turned into the first meeting room, the one with the
fireplace. It was room 1A, where the TIDD group would be meeting. Hoping to
find some solid reading material, I walked up to the giant bookshelves.

Timeless
Secrets of Health and Rejuvenation, Prostate Health, Breast Cancer Basics,
Multiple Sclerosis for the Newly Diagnosed
. These were great for sick people, but as something of
an expert in the field, what I really loved was my
Physician’s Desk
Reference
. It sat in my nightstand drawer, my own religious text.

As
I stood there staring at the books, my heart started to race a little and my
face broke out in a sweat. I grabbed a book and sat in a chair. Putting my hand
up to my forehead, I smiled. Fevers were my favorite. You just couldn’t argue with
a fever. It was solid proof, evidence that the body was at war with disease. My
abscesses were making me proud.

I
looked down at the book in my hands:
Multiple Sclerosis for the Newly
Diagnosed
.

In
spite of my earlier reservations, it was really pretty interesting, reading
about how the body could wreak havoc on itself. My fingers itched for a pen and
notebook, my little journal with the embroidered flowers on the front. It
consisted of the best secrets of sickness I’d found, symptoms and diseases and
descriptions of side effects parading around like little soldiers in a war.

When
someone tapped me on the shoulder, I jumped.

“Sorry.
Didn’t mean to scare you.”

It was a guy not much older than me, with rumpled,
curly dark hair and the faintest stubble on his cheeks and chin. He was tall,
well over six feet, but what drew my eyes instantly was his wooden cane.

I
forced myself to look back into his blue eyes. “It’s okay. I just didn’t hear
you come in.”

“I
figured you’re waiting in here for the TIDD group to start. We’ve actually
decided to meet in room 3 today.”

“Oh.”
I stood up and closed the book, meaning to put it back on the shelf and go get
their coffee and snacks.

“So,
MS, huh?”

Startled,
I jerked my head toward him. “What?”

“Your
book.” He nodded toward it. “You have MS?”

I
blinked once. Twice. Grasped the book to my chest. “Um, yes. I do.”

There
wasn’t a trace of pity in his smile. “Then you’ll love TIDD. We have some great
people, all in their early twenties. Come on.” He turned and headed down the
hall.

After
only a brief moment of hesitation, I followed.

The
guy was right; meeting room 3 was much smaller and not nearly as fancy as the
first one. The walls were still glass, but there was no fireplace and no giant
bookshelves. There were three other people sitting in chairs in a circle. One
was a college-aged girl. The other two were men—one was bald and in a
wheelchair, and the other wore a face mask so only his eyes were visible. I
took a seat between the girl and the tall guy I’d talked to.

He
smiled at me. “So, welcome to your first group meeting. We meet once a month,
alternating between Monday mornings and Thursday evenings. You’ll find we’re a
pretty friendly, social group. TIDD is where all the younger, cooler people
hang.”

There
were a few chuckles. I nodded and glanced at the others, then out the door. If
Linda decided to check on me in spite of being “swamped,” it would be over.

But
I wanted to ask, had to ask. I’d leave in a minute. “What does TIDD stand for,
again? They told me, but I forgot.”

The
girl snorted. “Don’t worry, even I forget sometimes and I’ve been in it for
about six months. It stands for Terminal Illness and Degenerative Diseases.”

Terminal
Illness. Degenerative Diseases. The phrases circled in my mind, two black crows
vying for closer inspection.

“Why
don’t we go around the circle and introduce ourselves?” the boy with the cane
said. “I’ll go first. I’m Andrew Dean, but everyone calls me Drew. I have FA.
If you haven’t heard of it, don’t feel bad—not a lot of people know about
Friedrich’s Ataxia. It’s a degenerative disease. I was diagnosed two years ago,
when I was nineteen.” He looked at the bald, birdlike boy in the wheelchair next
to him.

“I’m
Carson. I have T-PLL, a kind of Leukemia. They’ve given me six months to live.”
A deep breath. “Definitely wasn’t ready to hear that.” Drew put a hand on his
shoulder.

 The
Asian guy in the mask next to Carson smoothed his black hair off his forehead.
“I’m Pierce. And don’t worry. This mask is for my protection, not yours.” Laughter
went around the room. I forced a smile. “I have AIDS.”

The
smile froze on my face. AIDS. The word fell like a block of lead from his mouth
to the floor. What could I say to that? It was such a forthright dissemination
of information: AIDS. There was no sadness or disbelief like Carson’s.

The
girl next to me spoke, saving me from having to respond. “I’m Zee Rothman. I
have breast cancer.” She grabbed her breasts and squeezed dramatically. “These
babies aren’t real!”

The
guys burst out laughing and I snickered along. Finally, they fell silent and
turned to me.

I
cleared my throat. Now was the time to tell them about the big
misunderstanding. They’d laugh, I’d laugh. I’d get them their snacks and go on
my merry way. I glanced outside the glass walls. The hallway was empty.

My
mouth opened and words began to come out—I watched from a distance. “I’m
Saylor. And I...I have multiple sclerosis.”

Zee
put her arm around me. “Welcome,” she said, her breath cool and fresh against
my cheek.

“A
nyone
want to share first?” Drew looked around at the rest of the group.

I
kept my hands fisted in my lap, afraid to even finger my syringe while I was in
there. I felt like I’d burst out with something completely inappropriate, like
who I really was or what I had wrong with me. My brain burned feverish and
bright, my thoughts congealing into a glistening ball in the center of my
skull.

Pierce
spoke. “My mom’s going nuts. Practically every time we have a conversation, she
starts crying. It’s all, ‘Pierce, why did you have to go and be gay and get
this horrible disease?’ ‘Pierce, you’ve lost so much weight. You’re not eating
enough!’”

Everyone
murmured and shook their heads, apparently sympathizing with the situation.

“I
feel ya, man,” Zee said, slumping down in her chair. There was something
strange about her, with her wispy red hair in pigtails and her pale, skinny
arms jutting out from her t-shirt. She seemed to symbolize sickness, and yet,
there was an almost childish, spiteful sparkle in her eyes, as if she dared the
world to tell her she couldn’t have fun, couldn’t be brazen and carefree with
the time she had. “My dad’s going through the whole ‘let’s pretend this isn’t
happening’ thing right now. He refuses to talk about anything cancer-related.
When an ad for a hospital or meds or anything vaguely related to health and
sickness comes on, he changes the channel. He even talks about taking a freaking
vacation to
Italy
next summer. As if I’m going to be capable of that
kind of travel in six months. If I haven’t kicked the bucket by then, of
course.”

Carson
flinched at her coarse turn of phrase, but she didn’t appear to notice. Or
maybe she was just used to it. Or maybe, like me, Zee reveled in it. I knew
what it was like to get that stink of disapproval on you once. No matter how
much you tried to clean up later, it followed you around, hung on your clothes
and in your hair. You might as well enjoy it, learn to love it.

“Well,
I’ve been doing all right,” Drew said. His cane was propped up against the leg
of his chair. Stretching his long legs in front of him, he clasped his hands
behind his head. “Doc keeps telling me I’m going to need to watch how much I
walk because my balance is supposed to get bad, fast. You guys have seen part
of that.”

The
others nodded.

“But
I haven’t had any complaints since we last met, what, last month? That’s a lot
in the FA world. Things progress quickly. From able to disabled to fucking
wheelchair-bound. So I’m okay for now.” He caught my stare and half-grinned.
“Hey, we’re going to scare the new girl away.”

“Nah,
she knows our world.” Zee turned to me. “When were you diagnosed?”

“I
had to drop out of school last month,” I said. It wasn’t really the answer to
her question, because her question had no answer. I was a master of
manipulation, a wizard of the side-step. Throw down a few startling facts, wave
your hands around, and
alakazam
, they don’t even remember the original
question. “It got so bad my mum came and got me.”

“That’s
tough,” Drew said, shaking his head. “It’s gotta be tough on your mother, too.”

“She’s
more angry at me than anything,” I replied.

“They
go through that,” Carson said. “Don’t worry about it. It’s one of the stages
your loved ones have to go through. But at least the prognosis for MS is pretty
good. Your life span can be almost as long as someone without it.”

“Not
the kind I have. Mine’s aggressive.” I didn’t know what possessed me to say
that. It was like Carson was questioning my validity, my right to belong to this
exclusive club of wasting away adults; men who looked like little malnourished
infants and women without breasts. I spewed a fact I’d just read in the book.
“It’s the kind where I have symptoms almost constantly, and then I end up in a
wheelchair.” I swung my gaze to Drew. “Like you.”

“Wheelchairs
suck,” he said with a vehemence I admired.

“They
blow,” Zee concurred.

“Down
with wheelchairs. That should be our slogan.” Pierce’s eyes crinkled, like he
was laughing behind his death-averting mask.

I
laughed, too, the sound hollow in that big room filled with people who were
barely there, barely still a part of this world. Wraiths, the lot of us.

I
glanced at my watch. I’d been sitting in there with the group for about fifteen
minutes. I heard the basement door open and shot out of my seat. I simply could
not
let Linda find me here, pretending to be a patient, duping the very
support group members I was supposed to serve. What if they told not just that
shrink, Dr. Stone, but my mother? Technically I was an adult, but there was
something about having a mental illness that made people think you needed your
parents as a crutch. And if I was being totally honest, I had a hand in that,
too. A big one. When I was sick, I turned to Mum to help me through it, to
lavish me with motherly attention.

Everyone
turned to stare at me. Drew looked concerned. “You okay?”

“Um,
yeah. I just, I have to make a phone call. I just remembered.”

“Okay.”
He nodded, but I could see that he was still confused at the way I was rushing
out of there.

I’d
need to make up a good excuse later, smooth things over so he and the others
wouldn’t feel the need to check up on me, ask around about the weird girl with
MS. And of course, I couldn’t volunteer down there anymore. Stupid, stupid,
stupid. Self-loathing boiled through me. Why did I have to sabotage everything
in my life? What if I couldn’t go back to the hospital to volunteer? What was I
going to do about getting sick, about the hardcore medical supplies I needed
that I couldn’t order from my usual website? Panic began to thrum through me
and I had to make a concentrated effort to push it into the far recesses of my
mind.

I
walked down the hallway to see who’d come in the basement door, expecting to
run into Linda. But to my intense relief, it was just an elderly janitor,
switching out trash bags. He raised one hand in a wave from the first meeting
room. Returning it, I pushed open the door to the stairway and headed back upstairs
to the main floor of the hospital. After I signed out at Betty’s desk, I walked
outside.

It
was snowing. And it wasn’t just little, wimpy, half-rain type snow. These were
the big, fat, fist-sized flakes I used to love as a kid. The kind of snow my grandma
used to call “sticking snow.”

I
glanced around me to make sure I was alone, and then, looking up at the sky,
stuck my tongue out. I caught one snowflake, two, three.

My
grandma, Mum’s mother, lived with us when I was really small. I still
remembered glimpses of her here and there. She used to wear these heavy knitted
sweaters over her saris and come out with me in the New Hampshire snow. We’d
make snowmen and snowwomen, sometimes even snowgirls who looked like me. She’d
make me warm saffron milk when we came in from the cold.

Then
one day, I came home from school and she was gone. Mum wouldn’t say where. She
just said Grandma had to leave. It was bullshit. I knew even back then that she
was lying. But I didn’t know how to make her tell the truth. I hadn’t seen or
heard from Grandma since.

“Snow
is
pretty delicious, but I know a really good restaurant if you’d rather
have something warm.”

I
snapped my mouth shut, biting the edge of my tongue. Swallowing a curse, I
turned on my heel and looked at Drew. “Oh, that. I, um, yeah.” I looked away,
the heat emanating from my cheeks enough to melt the snow a mile away.

“You
got no excuse.” He laughed. “It’s okay, I like to eat the big flakes, too.” He
opened his mouth, full lips parting, and caught a few of his own. When he
looked at me again, there was snow on his dark eyelashes. “See?”

I
nodded and looked at his cane, at his hand gripping the handle. The graceful
curve of it reminded me of a swan’s neck. I felt my pulse kick up a notch.

“I
really meant it, though,” he continued. “Zee and I are heading over to Sphinx.
Wanna hang? You can tell us more about you.”

I
analyzed his disarming grin, trying to find an angle.

The
last time I’d been invited to hang out with anyone, no strings attached, had
been in fourth grade. I’d gone to my friend Allie’s house after school. Her mom
worked till five so we had an hour and a half of alone time—a highly prized and
extremely uncommon commodity among us nine-year-olds.

Allie
was the cool kid in the class. Her mom let her buy her own makeup at the
drugstore. She had a Hello Kitty compact mirror that I coveted. So when she
invited me to hang out at her place, I almost died. I told my mother about it,
but managed to leave out the fact that we’d be unsupervised for ninety minutes.

We
were in Allie’s living room, reading her mom’s Cosmopolitan magazines, when
she’d pointed to my legs. They were crisscrossed with silver-white lines. The
summer before school started, I’d found my mom’s razor blade.

“What’s
up with that?” Allie asked, licking her finger and turning another page in the
magazine.

She
kept reading, but the air around us hummed with tension. I knew what I said
next would matter. A
lot
. I found my brain darting from lie to lie to
lie in a spastic, breathless attempt to come up with something convincing
enough, something plausible enough, to tell Allie so she wouldn’t ask any more
questions. But the truth was like this giant mountain in front of me; I just
couldn’t see past it.

I’d
seen a therapist for six weeks that summer, someone who said who I truly was
was important and precious, that the friends worth having were the ones I could
be myself with and not worry about what they thought. Maybe it was that, or
maybe it was the fumes from the nail polish we’d just splattered all over our
fingernails and toes, but whatever the reason, I ended up blurting out the
truth.

“I
cut myself,” I said, my heart pounding so hard, my chest actually hurt from it.
I was sitting on the floor, my legs crossed, and I ran my hands along the skin.
I couldn’t feel the scars anymore. “With my mom’s shaver.”

Allie
looked up from her magazine, her blonde eyebrows meeting the fringe of her
hair.
“Why?”

I
shrugged. I was beginning to feel like this had been a bad fucking idea. It was
the first time I realized therapists were full of shit. “I...I think I just
wanted to try it. Shaving. I wanted to wear a bathing suit, so...”

“Nuh
uh.” Allie set her magazine to the side. “That’s not from shaving. I’ve done
that before and I didn’t have lines all up and down my legs. You did that on
purpose, didn’t you?”

We
locked eyes for a minute. Then I nodded. “Please don’t tell anyone at school.”
My voice shook because I knew. Of course she was going to tell everyone. I
would’ve if the tables had been turned. Nine-year-old girls are shit at
loyalty.

“I
won’t,” she said.

She
lied.

I
put my hands in the pockets of my hoodie. “Nah, it’s okay. I should probably
head home anyway.”

“Oh,
come on!”

Drew
and I turned at the voice. It was Zee, walking slowly up the path from the
hospital to the car lot. “I can tell you’re turning him down.” She came up to
me, out of breath. “It’s not a
date
with this goofball—I’m gonna be
there, too.” She grinned at Drew, and he rolled his eyes.

“Thanks
a lot, Zee,” he said. “And anyway, I did tell her you were going to be there.
Maybe that’s why she doesn’t want to come.”

Zee
punched his arm and they laughed. It was strange, as if friendship actually
meant something to these two in spite of the fact that they’d both be dead
sooner rather than later. What did they talk about when they hung out together?
What do young people without futures talk about?

Curiosity
ignited somewhere deep inside me. We weren’t going to be at the hospital.
Shelly and Linda wouldn’t accidentally run into us.

When
Zee turned to me, her smile had faded and her eyes were serious. “Look, I know
what it’s like to be newly diagnosed. All your usual friends look at you with
that awful mixture of pity and thank-God-it’s-not-me on their faces and you
have no one to hang out with. Why don’t you come out? I promise no one’ll make
you talk about it unless you want to.”

“All
right,” I said, a weird thrill running through me. “I’d love some coffee.”