Wednesday, January 23, 2013

Of Breakable Things and EDS

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.”


                “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: