The disco lights were blinking in beat to the soundtrack of Michael
Jacksons’ “Beat It”. The large colorful space of the roller rink was
speckled with people sharing laughs, some wobbling back and forth
fighting the glide of their skates, and some passing by with speed and
skill that made one “ooh!” and “ahh!”. The room swirled into a shaded
rainbow for a couple of revolutions until the only sight to be seen was a
girl named Daisy, who was in hysterics from her whirlwind spins with
whoever was out of frame.
“ Oh my god! Did you see that Sam?” Daisy shouted.
Daisy lifted herself off the floor, grabbed onto something for balance,
and laughed into the camera of the iPhone 12 that was strapped onto
Miranda’s arm.
“I’m such a klutz!” she said as she laughed out of frame.
The frame seemed to fall down with control until Miranda filled the
camera with her wide-stretched smile. She held the camera in an
outstretched position showing three other friends keeping speed behind
her.
“That was hilarious, wasn’t it?” She gestures to the camera.
Across from the receiving iPhone seated on a tripod, sat Samantha.
Samantha sat comfortably upright in her electric wheelchair, one hand
wrapped around the Bluetooth device she used to take screenshots of the
night, and the other held up a half-curled peace sign. Her smile was
pulled halfway to the left, her right side unmatching due to the numbness
in her face.
“Did you get it?” Miranda asked.
Samantha slowly but largely nodded a ‘yes’.
“Okay, I’ll see you at home soon.”
Miranda smiled, brought the phone up close enough to show nothing but
her face, gave a quick kiss into the camera and then hung up the
facetime call. Sam released her Bluetooth device into the cupholder of
her chair and used the remote stick to reverse away from her standing
desk.
College algebra homework and tutor materials lined the desktop beyond
the tripod. An iMac sat on the corner of the desk. The largeness of the
computer screen hid the bottom corner of a bulletin board tacked upon
the wall which was collaged with Polaroid photos of friends and family.
Most of the photos bared a younger version of Sam and Miranda
standing in the pool, kicking a soccer ball back and forth, eating ice
cream in “’22”.
That summer was the last summer Samantha would stand in line for a
cone. It was a hot day in late July. The pool had been a cool drink, the
type of coolness that leaves a refreshing feeling in your spine after
beading from sweat on the way to the watering hole. The maintenance
staff was exceptional at keeping the neighborhood facilities squeaky
clean, allowing girls to marvel at the color of their immersed pedicures
in the aqua space under the warm sun. Sam and Miranda’s matching toes
were white. They spent every day at the pool that summer, never tiring
of the wet bathing suits and tanning heat. Twelve p.m. to three p.m. were
the magic hours. At 12 PM the ice cream truck could be heard entering
the neighborhood. At 12 PM, Troy’s lifeguarding shift began. Summer
fun started at 12PM. Had Samantha known that was going to be the last
summer she was going to experience “summer”, she’d have stayed six
hours every day.
Samantha rolled out of her room, down the hallway, and into the kitchen
where her mom, Lana, stood with a glass of wine in hand. Her mother
was a physically strong woman who fit snugly into a petite size. Her
biceps peaked no matter the position and her hips were curved perfectly
in the hourglass figure of someone who could deadlift 205 lbs. Samantha
appreciated her mother’s physicality because it mirrored what she might
look like in the future. Her father was just as strong of a burly man as
one could ask for, but there were many late nights at the hospital, so
Lana had to pick up much of the physical slack. Sam especially
appreciated her mother’s physicality because it’s what secured her
emotionally over the last 4 months. Her mother had always been a health
nut and a physically fit individual, but her personal bests hadn’t kicked
up until after Sam’s legs went.
“Hi baby girl,” her mother squeaked. “Is Miranda on her way home
yet?”
“Yeah, she’ll be home soon,” muttered Sam through the left side of her
mouth.
Instinctively, Lana opened the refrigerator, pulled out cold water, poured
it into a glass, dressed it in cucumber inserted a straw, and held it to her
daughter’s mouth.
“Thanks, I really needed that,” Samantha gratefully exclaimed.
Lana knew Sam wanted a drink of water every night before she started
her nightly routine. Lana knew what Sam’s nightly routine consisted of.
She knew Sam needed to hydrate at night and that Sam would need to
urinate in 40 minutes. She knew how to clean Sam’s ports, when her
next follow-up was, the feelings her daughter concealed from the
doctors, and she knew how much money she needed to set aside for the
upgraded foam seat Sam wanted for her birthday next month. What she
didn’t know was if things would ever be normal for her daughter again.
“So how was the roller rink,” Lana inquired.
“Daisy fell… I think they were holding hands spinning around and then
she lost her balance.”
“Did she hurt herself?”
“No, she landed right on her butt!”
“That girl manages to fall on her butt every time they go, doesn’t she?”
“She sure does. Remember last week, at the pool when she stepped on
that ball?”
“I thought she had twisted her ankle. Next thing I know, this crazy girl is
sprinting from the bottom of the hill into a cannonball!”
“She is so crazy,” they laughed in unison.
By the time Lana had changed Samantha into pajamas, assisted her in
her bathroom routine, and laid her down in bed, Miranda was walking
into the house, two gift bags in tow with her.
Miranda joined her sister and mother on Sam’s bed and proudly flaunted
the brightly colored pink bags.
“I think I’ve solved your problem sis,” Miranda began.
“I’m game!” Sam replied back.
Sam pulled out a portable charger pack, a 6-inch charger cord, and an
adhesive stick tripod made for the dashboard or window of a car.
“Ah, genius,” Lana whispered.
“And for you mom, a new bottle of Cabernet.”
“Thanks, baby! I’m going to go pour a glass of this now.”
Lana gave each of her daughters a kiss and waltzed out of the room.
“You know us so well Miranda, thanks!”
Samantha said this genuinely, which brought a lopsided smile to her
sister’s face. Miranda seldom knew how to make her sister happy these
days.
She was there the day her sister suddenly collapsed into the pool, from
what they thought was a seizure. She was laughing, shouting in the
direction of her sister who was walking wayside of the pool, two ice
creams in hand. She had made eye contact the very moment her sister
began to seizure. She lost her balance, and crumpled sideways into the
beautiful aqua water they had sat in all summer. Miranda’s instincts, as
good as her mother’s, had her underwater in a split second, breast
stroking across the pool towards the shallow end. She was wide-eyed the
entire time, taking in the subaquatic environment that enveloped her
sister in a dangerous way that she hadn’t recognized since they were
children. She was halfway when the blue liquid began to turn red. She
was halfway when the crystal clear vision in front of her became
muddled with bubbles, legs, and bodies, rushing to pull her sister’s
motionless body out of the water. She cried out once above water and
rushed to her sister’s side. All around her, people rushed to supply first
aid, hide their children from the emergency and hold others back
because they were simply in the way. It felt like such a long time before
the paramedics arrived, which she made very clear in a panicked voice
that sounded just like her mom's on a “bad day”. She sat in silence in the
ambulance and questioning herself softly, yet concisely, she knew the
answer. She was wet and cold but couldn’t think to care because there
was only one thing she knew: her sister’s life had changed.
Her life changed just as much.
In the initial months, her sister was in and out of consciousness. Sam
suffered a skull fracture from falling head-first into the 3-foot end. She
recovered after 3 months and by that time, Halloween had just passed. It
wasn’t much of a Halloween though. They spent it in the hospital,
dressed in their costumes, eating junk food, and playing scary movies on
the TV. Her parents had bought her custom bed sheets, socks, and a pair
of cat ears for the holiday. They took Polaroid pictures, made her a
spooky card, and spent the night hoping she’d wake up and they’d get to
enjoy Samantha’s favorite ‘the latest installments of the Halloween
franchise movies. Once November 1st hit the calendar, they figured each
of their holidays would be the same, but on Thanksgiving, they had been
given something to be truly thankful for. By Christmas, it had been
determined that a seizure, although the initial incident, had not been the
cause of the fall. Multiple Sclerosis was the official diagnosis and 2023
was going to look very different than 2022.
Miranda had walked in on her sister one night in late February, drenched
in tears, unable to completely wipe them away due to partial paralysis.
She approached her sister and listened intently with loving compassion
to the fear and disappointment of what her life might look like in her
condition. The loneliness Sam felt would loom over her ever more
present now that she was out of the hospital. She had expressed how
easy it had been to be alone in the hospital, with the company of those
she felt had the expertise to take on her wants and needs.
Being home and alone was different.
In the hospital, Samantha knew her life wasn’t the same- she wasn’t
around friends as often, and she didn’t have to think about school
assignments. But at home, in the presence of her personal belongings,
she never felt more out of place in her own life.
And that killed Miranda.
“I just feel like I’m not in your life anymore, much less my own. I can’t
go out, I can’t walk out of the house, I can’t swim anymore,” Sam
expressed.
As if we’re ever going to that pool again, Miranda thought.
“I just feel hopeless, and jealous of you. But more than that, I miss you.”
“I miss you too.”
“Will it be like this forever?” Sam had never sounded more bleak than
when she asked this question.
A fire burned inside Miranda. She felt her gut harden with an intensity
that one only feels when one knows a change is on the horizon, like the
whisper of a higher call that hasn’t actually been heard yet.
“NO. It won’t be.”
The next day, and for a week straight, Miranda had taken Sam
everywhere she went. It wasn’t without a lot of resistance and complete
parental supervision the entire week. Miranda and her parents got on a
phone call with the doctors and received as many travel, food, and other
necessary recommendations as they could ask for. Miranda set up simple
dates with their group of friends. With every picnic, pop-up photoshoot,
shopping excursion, and pedicure they had, Miranda, could see life arise
back in her younger sister’s eyes. She saw the teary happiness that was
opposite the deep hopelessness in her sister’s eyes every night when they
returned home. The past few months had been the only chunk of time
that the two had been apart from each other since birth. Even in school,
they had nearly all the same electives and upper-level English classes.
Miranda hadn’t realized the actual impact she had on another’s life until
that week.
She repeated it again the following week: picnics, a pedicure, a movie in
the 1st row on the upper deck of the theatre, in the handicapped section.
Miranda was happy and Samantha was feeling herself again.
Two months had passed and while there was so much more fun, it began
to weigh on Sam. She felt exhausted from the mental energy it took to
stay engaged. She was beginning to feel slightly annoyed with the
amount of time it took to get her ready, the amount of time getting into
and out of the car, and annoyed with the inconveniences of being away
from the comfort of home. Her legs had cramped up during one of the
pedicure sessions, causing her to only get seven toes completely painted.
She had drunk too much water one day and they had to stop twice on the
way to the park so that she wouldn’t lose more control of her bladder
than she already had. There were times when she felt the weight of her
burden when she heard her sister sigh at the inconvenience of her food
dropping out of her hand.
“I really appreciate everything you’ve been doing for me, I didn’t think I
would be able to make more memories since waking up. But I don’t
think I can keep up with this all the time anymore,” muttered Samantha.
“I’ve made it worse, haven’t I?” Miranda couldn’t help but trail off…
“No. You’ve made life so much more colorful for me.. but I can’t do
much for myself right now, and I can’t help feeling like you’re only
living for me.”
“But isn’t that what I’m supposed to do?”
“Not at the expense of your happiness. Dragging me everywhere, having
to lug me around and worry about my issues-“
“Mom and Dad have to worry about your issues too,” Miranda cut in.
“Not like you do, not in the way a sister cares..”
“Hey. I am going to care no matter what. I care when you cry, I care
when you’re hurt, I care that you’re happy and socialized, and that your
life hardly changes, because our friends missed you. They miss you, just
like I miss you. I love you and I will always try to contribute to your
happiness!”
“I understand that. Thank you. But it’s just gotten harder for me to feel
100% comfortable when I can’t even feel 100% of my body.”
“So, what, then? You’re just going to stay inside all the time now?”
“Not always. I’ll want to go out sometimes. But, things have changed. I
feel weaker and weaker every day. I can’t go out as much. And that’s
completely okay with me.”
“It’s not with me.”
“But it’s my life. My life is different from yours. You have the ability to
walk and run, stand and leave, jump, and exercise. I have to get used to
not being able to live the way you can.”
Miranda begins to cry. The realization that she and her sister are
completely different settles in. She sobs into her sister’s lap almost as if
begging for forgiveness.
“Shhh, it’s okay Miranda. Just turn on your phone and you can take me
everywhere with you.”
“My phone? Why my phone,” Miranda sniffles.
“I don’t have to completely miss out on life. I just have to be
comfortable. I’m not doing much except healing and learning how to
live like this, I won’t be far from my phone really. You can just call me
anytime you go and do something fun that I can’t do…”
This conversation rang in the back of Miranda’s mind and she snapped
back into the present.
She opened the box containing the dashboard tripod and stuck it on the
wide armrest by the cupholder.
“Look, it even curls sideways so you can position it however you want,”
Miranda said encouragingly.
“As if people already think I’m a phone addict!” Samantha giggles.
That’s not what the reality was though. There were a few days in the past
couple of months when Samantha hardly looked at her phone. There
were days she didn’t answer her sister’s Facetime because she was in the
living room reading. Her sister opted to send videos.
Opening night movie screenings, first dates (that her friends spied on),
laser tag games and painting classes had been the latest things Samantha
could experience- through her sister’s eyes. She hardly missed out on
inside jokes, never missed a Saturday brunch, and always cheered her
sister on while she was at the gym. Most of the time Samantha was a
spectator, watching the world outside through the lens of her IOS 16.4.1,
in the comfort of her own home, as she wished.
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1 comment
I like the story, but what happens next?? You've got to keep writing! Great job.
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