When people ask about Of Breakable Things, and I tell them that
most of my characters are dead, their reactions are priceless. It wasn't my
intention for this to happen, but as the story played out in my head the
main character was ill and would die young. This made her who she was, and
there were no miracles to save her.
What is Ehlers-Danlos syndrome? I had no clue until I
started researching. Of Breakable Things is about the fragility of
life and love and perception. But Alex is the epitome of something breakable,
and it wasn't until I stumbled upon this disorder that I knew I'd
found something as symbolic as her.
It's difficult to describe in layman's terms, so I requested
approval from the powers that be, and (rubbing hands together) here is a small
clip from Of Breakable Things! We'll see if the scene makes the cut because I've altered the point of view since my edits arrived. This one is written from the perspective of
Alex's best friend, Chase, as an eight year old:
He couldn’t fathom the idea that his best friend was sick.
She had too much energy. When he stood next to her he could feel it like the
static electricity he learned about in science class. So then how could she
somehow have less life than he did?
He knew it was called Ehlers-Danlos
syndrome, and he’d heard Alex’s doctor say things like type IV and vascular and dangerous. He knew Alex’s mother had been sick with it, too. And
her mother was dead.
“They
don’t look any different to me,” Chase whispered to his mother. That morning
they had driven into the city so Alex could attend some sort of meeting. There
was a huge banner outside the Baltimore Convention Center that read Learning Conference: Living with EDS.
His brother, Jonas, had snorted and told Alex she was going to a freak show.
Chase had punched him in the belly, and to his shock and amazement, his mother
turned her head without scolding him. And now sitting outside the convention
center, the people walking inside didn’t look strange at all.
“There are different kinds of EDS,” his mom
explained, ruffling his hair. “Some are worse than others.”
“Worse than Alex’s?”
She
shifted on the bench. “No. Alex has the worst kind.”
Chase
frowned. “She doesn’t look sick.”
“That’s
because most of it is inside her body.” She pointed to his arm. “You have
tissues in there.”
He made
a face.
“Not
the kind you use to blow your nose. Your tissues hold your body together.
Alex’s tissues don’t work quite as well as yours.”
No
kidding. One time he pulled on her arm to get her attention and her shoulder
fell out of its socket. He cried the entire way to the hospital because he’d
hurt her.
“In our
tissues we have something called collagen. And if collagen is like the glue of
body, the normal person has liquid cement and Alex has cheap Elmer’s glue.”
“Is
that why Jonas says that Alex was assembled at Kmart?”
His
mother rolled her eyes. “Probably, but Jonas really shouldn’t say that. Remind
me to speak to him about that.”
Chase
fiddled with the Velcro on the pocket of his shorts. “I still don’t get it.”
“What?”
“Why is
it such a big a deal?”
“Tissues
support your skin which is why Alex bruises easily. And they hold your bones
together which is why hers are more likely to break.”
“But
broken bones don’t kill you,” he argued. “Why did her mom die?”
His
mother’s face crumbled, and he felt that pang in his chest when he knew he’d
said something wrong.
“I’m
sorry.”
“No,
don’t be sorry. I just miss her.” After a few moments, she cleared her throat.
“Um, well, tissues also support your organs. Like your heart, that’s an organ.
The things inside you that keep you alive, if they aren’t supported properly,
you could bleed inside your body. That’s what happened to Alex’s mommy when
Alex was born. They couldn’t stop the bleeding.”
“Is
that why her dad hates her?”
“He
doesn’t hate her."
Chase looked at his mom
doubtfully, but quickly shifted his attention as several people exited the
convention center. His heart fluttered in hope, but his friend wasn’t among
them. He couldn’t believe his mother made him stay out here instead of going in
with Alex. This was all Miss Petra’s fault. Their teacher was the one to
suggest that Alex’s friendship with the Lasalles might be detrimental to her
health. She was always trying to put them in separate groups during class or
encouraging Alex to hang out with the other girls during recess. Thankfully,
Alex didn’t like being told what to do, and she ignored the suggestions. But
within the past few months, Alex had broken three different bones during their
adventures with his brothers. So her dumb doctor recommended she meet other
kids who were “limited” like her.
A
selfish part of him wanted Alex to come screaming out of that door. Usually
they joked about her illness. They would look at the bruises on her arms and
laugh about what they saw… like lying in the grass and finding images in the
clouds, only these clouds were stormy. She was going to be sick no matter what,
so what good would it do to sit around and talk about it? Alex wouldn’t enjoy
this experience. Or at least that’s what he hoped. After all, he needed her as
much as she needed him.
She just never
understood that.
~~~~~~~~~
It's one thing to write about it, but things become
completely real when the photo of a gorgeous little girl is staring back at you
with a caption about her illness. A friend of mine sent me a link to a Facebook
page entitled Prayers for Baylee because she recognized the name of the disorder
from my description of Alex Ash. Baylee was diagnosed with isolated NK cell
deficiency and Ehlers-Danlos syndrome. The site is meant to generate thoughts
and prayers for this little girl and her family, but apparently many people are
sending gifts and cards as well.
When I showed Baylee's picture to my son while we made a
card, he exclaimed, "She looks like Kara!" And yes, she does resemble
a friend from his preschool class, and that makes the situation even harder to
swallow. I've never met this girl; I don't know her family. But to look at her
photo, my heart clenches. Please take a moment to 'like' her page or to just
say a prayer. Wristbands are available for purchase on their site to help
with her medical expenses, but apparently cards are welcome, and prayers are
the purpose.
May God bless this little angel.
Prayers for Baylee:
Twitter: @prayersforBayle
To learn more about Ehlers-Danlos syndrome:
