Teen with Ehlers-Danlos Publishes Book Alongside Loyal Friend
Kylie and Elizabeth’s novel – 5 years in the making – is now published! It is an imaginary tale written by a pair whose friendship is proven and real. “It takes a very special person to stick with someone who has gone through what Elizabeth has gone through”, says her mom, Amy Schulze (Co-Leader of the Cincinnati EDS Support Group).
By: John Johnston Photo By: Tony Jones
“FAIRFIELD TWP. – Elizabeth Schulze and Kylie Powell will sign copies of their new book Saturday at Book Bums in West Chester.
It’s notable that the authors are a pair of 16-year-old Fairfield High School sophomores, and that they spent five years writing “Cursed Ones,” a 296-page fantasy/science fiction novel. But the real story, the truly remarkable one, is not the girls’ book.
It’s their friendship.
“She was the only person that stayed my friend, aside from kids who live on the street, during a time of hardship,” Elizabeth says.
Says Kylie: “My best friend is more than a disability.”
Elizabeth, one of her two siblings and her mother have a rare hereditary condition called Ehlers-Danlos Syndrome, or EDS. It weakens connective tissues and causes joints to dislocate, often resulting in chronic joint pain. There is no cure.
Elizabeth has also struggled with an EDS complication called postural orthostatic tachycardia syndrome. Sometimes when she stands up, her heart beats rapidly and her blood pressure drops, causing fainting spells that have led to seven concussions.
She was on bed rest for 4½ years, starting in fifth grade. She could not climb stairs to her bedroom, so she slept in the dining room of her family’s Fairfield Township home. Often, she was in excruciating pain, hardly able to sit up. She was tutored at home.
Elizabeth’s rehabilitation doctor at Cincinnati Children’s Hospital Medical Center told her she did not have to lie around and feel sorry for herself. He said she could do something.
Whatever she might do, though, would have to happen without a circle of friends.
“I lost contact with them because I wasn’t at school,” Elizabeth says.
Her mother, Amy Schulze, says young people can be overwhelmed by what Elizabeth has endured.
But Kylie, a friend since third grade, stuck by her.
Almost every weekend, she came to Elizabeth’s house and spent the night. Both had read “Lord of the Rings.” Neither liked the ending. So they wrote their own, and then more stories sprung forth.
During sleepovers the girls tapped their imaginations and pretended they were somewhere else. They created a world where they were conquering heroes. “A world where I didn’t have Ehler-Danlos Syndrome and her brother didn’t have autism,” Elizabeth says.
A book began taking shape. Even when Elizabeth was on the rehab floor at Children’s, she would discuss it by phone with Kylie after a long day of therapy.
“That was the time that you saw her smile,” Elizabeth’s mother says.
Elizabeth’s joints prevent her from typing, so Kylie did it all. They discussed revisions and Kylie retyped the changes.
“Kylie is a remarkable young woman that is so dedicated and so driven,” Elizabeth’s mother says. “It takes a very special person to stick with someone who has gone through what Elizabeth has gone through.”
Though the girls are different in some ways – Kylie is the shy one; Elizabeth more outgoing – one trait they share is the ability to persevere.
They contacted and worked out a deal with WestBow Press, a Christian company that helps authors self-publish. Elizabeth’s mother made a call that led to Hank Stewart editing the book. He’s an adjunct assistant professor of English at the University of Cincinnati-Clermont College.
“He was so supportive and enthusiastic and gentle with them,” Amy Schulze says.
The girls learned storytelling – plots and subplots, character development, pacing and foreshadowing.
More than anything, they learned about the power of friendship. Their friendship.
“It’s God-given,” Elizabeth says.
Kylie likens it to the Biblical story of friends David and Jonathan, who “stuck with it through thick and thin.”
“She helped me through really, really hard times,” Elizabeth says, including when her long period of bed rest ended at the end of eighth grade. Returning to school was difficult after so much time away.
“If you had not stayed my friend,” she says, looking at Kylie, “I don’t think I would have gone back to school.” Elizabeth uses a wheelchair there, and a walker at home.
Now at their school, book clubs are inviting the young authors to discuss “Cursed Ones.” Elizabeth describes it as ” ‘Lord of the Rings’ meets ‘Star Wars’ in a parallel universe.”
In other words, it’s an invented, imaginary tale penned by a pair whose friendship is genuine and real. ■
Elizabeth Schulze and Kylie Powell will sign copies of”Cursed Ones,” from 1 to 4 p.m. Saturday at Book Bums, 8992 Cincinnati Dayton Road, West Chester. Information: 513-847-1471.
Video refer: Young authors Elizabeth Schulze and Kylie Powell discuss friendship and their new book.”
These young authors have a fabulous partnership. We congratulate them on their new book!
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