CHAPTER 8
WILL
I carefully shade Barb’s hair,
leaning back to look at the drawing I did
of her holding a pitchfork. As I’m nodding in contentment, my phone begins
vibrating noisily on my desk, making the colored pencils dance. It’s Stella. On
FaceTime.
Surprised, I reach over to pause the Pink Floyd song on my computer,
swiping right to answer the call.
“I knew it!” she says as her wide eyes come into view. “Where’s your
AffloVest? You weren’t supposed to take it off for another fifteen minutes. And
did you take your Creon? I’ll bet that’s a no.”
I fake an automated voice. “We’re sorry, you have reached a number that is no
longer in service. If you feel you have reached this recording in error—”
“You can’t be trusted,” she says, cutting into my killer impression. “So, here’s
how this is going to work. We’ll do our treatments together so I know you’re
really doing them.”
I tuck the pencil I was using behind my ear, playing it cool. “Always looking
for ways to spend more time with me.”
She hangs up, but for just a second I swear I saw her smile. Interesting.
* * *
We stay on Skype for most of the next two days, and surprisingly it’s not all
barking orders. She shows me her technique for taking pills with chocolate
pudding. Which is freaking genius. And delicious. We breathe in our nebulizers,
and do our IV drips, and mark off treatments and meds together in her app. But
Stella was right a few days ago. For some reason me doing my treatments is
helping her to relax. Gradually she’s becoming less and less uptight.
And, I won’t lie, even after two days, it’s way easier to get out of bed in the
morning. I’m for sure breathing better.
On the afternoon of the second day, I start to put on my AffloVest, jumping
in surprise when Barb busts through the door, ready for the usual four o’clock
fight that we have over it. She always wins the brawl to get it on after
threatening to confine me in isolation, but that doesn’t stop me from trying to
get out of it.
I slam my laptop down, abruptly ending my Skype call with Stella as Barb
and I stare at each other in a classic Old Western standoff. She looks from the
AffloVest to me, the steel in her face melting away into a shocked expression.
“I don’t believe my eyes. You’re putting on your AffloVest.”
I shrug like it’s no big deal, glancing at the compressor to double-check that
everything is hooked up right. It looks fine to me, but it’s definitely been a while
since I’ve done this myself. “It’s four o’clock, isn’t it?”
She rolls her eyes and pins me with a look.
“Leave it on for the whole time,” she says, before sliding out the door.
The door is barely closed before I fling my laptop open, calling Stella on
Skype as I lie upside down off my bed, pink bedpan in one hand for mucus
disposal.
“Hey, sorry about that. Barb . . . ,” I start to say when she picks up, my voice
trailing off when I notice the dejected expression on her face, her full lips
turning down into a frown as she stares at her phone. “You okay?”
“Yeah,” she says, looking up at me and taking a deep breath. “My entire class
is in Cabo for our school’s senior trip.” She turns her phone around to show me
an Instagram picture of a group of people wearing bathing suits, and sunglasses,
and hats, posing happily on a sandy beach.
She shrugs, putting her phone down. I can hear her vest vibrating through
the computer, the steady hum in time with mine. “I’m just a little bummed I’m
not there.”
“I get that,” I say, thinking of Jason and Hope and all that I’ve missed out on
these past few months, living vicariously through their texts and social media
feeds.
“I planned the whole thing this year too,” she says, which doesn’t surprise me.
She’s probably planned every step she’s ever taken.
“And your parents? They’d let you go?” I ask, curious. Even before the B.
cepacia, my mom would’ve axed the idea. Vacations from school have always
been needle times for me.
She nods, curiosity filling her eyes at my question. “Of course. If I was healthy
enough. Wouldn’t yours?”
“Nah, unless, of course, a hospital there is claiming to have some new magical
stem-cell therapy to cure B. cepacia.” I sit up and cough a whole bunch of mucus
into my bedpan. Grimacing, I lie back down. I remember why I kept taking this
off before it could really get going. “Besides, I’ve already been. It’s beautiful
there.”
“You’ve been? What was it like?” she asks eagerly, pulling the laptop closer.
The blurry memory swims into focus, and I can see my dad standing next to
me on the beach, the tide pulling at our feet, our toes digging into the sand.
“Yeah, I went with my dad when I was little, before he left.” I’m too caught up in
the memory to process what I’m saying, but the word “dad” feels weird on my
tongue.
Why did I tell her that? I never tell anyone that. I don’t think I’ve even
mentioned my dad in years.
She opens her mouth to say something, but I quickly change the subject back
to Cabo’s scenery. This isn’t about him. “The beaches are nice. The water is
crystal clear. Plus, everyone is super, super friendly and chill.”
I see the dejection in her eyes growing over my rousing review, so I throw in
a random fact I heard on the Travel Channel. “Oh, man, but the currents are so
strong there! You almost never get a chance to swim, except for maybe, like, an
hour or two every day. You just broil on the beach most of the time, since you
can’t go in the water.”
“Really?” she asks, looking skeptical but grateful at my attempt.
I nod eagerly, watching as some of the sadness slides off her face.
We vibrate away, a comfortable silence settling over us. Except, of course, for
the occasional hacking up of a lung.
After we finish using our AffloVests, Stella hangs up to give her mom a call
and to check in on her friends in Cabo, vowing to call me back in time for our
nighttime pills. The hours pass slowly without her smiling face on the other side
of my computer screen. I eat dinner and draw and watch YouTube videos, just
like I used to do to kill time pre–Stella’s intervention, but it all feels extra
boring now. No matter what I do, I catch myself glancing over at my computer
screen, waiting for the Skype call to come in as the seconds tick by at a glacial
pace.
My phone vibrates noisily next to me and I look over, but it’s just a
notification from her app, telling me it’s time to take my nighttime meds and set
up my G-tube feeding. I look behind me at my bedside table, where I’ve already
laid out a chocolate pudding cup and my meds, ready to be taken.
Like clockwork, my computer screen lights up, Stella’s long-awaited call
coming in.
I hover over the accept button, stifling my smile as I wait a few seconds to
pick up, my fingers tapping away on the trackpad. I click accept and fake a big
yawn when her face appears on my screen, casually glancing at my phone.
“Is it time for the nighttime meds already?”
She gives me a big smile. “Don’t give me that. I see your pills behind you on
your bedside table.”
Embarrassed, I open my mouth to say something, but shake my head, letting
her have just this one.
We take our meds together, then get our tube-feeding bags out to set up for
the night. After pouring the formulas in, we hang the bags, attach the tubing,
and adjust the pump rate for how long we’ll be asleep. I fumble with mine, and
glance over at Stella to make sure I’m doing it right. It’s been a minute since I’ve
done it myself. After that we prime the pump to get all the air out, our eyes
meeting as we wait for the formula to make its way down the tube.
I start to whistle the
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