Chiara Sparks fell so far behind in her Grade 12 English class that only a huge assignment would let her graduate on time: writing a 100-page book.
That was hard. The topic choice wasn’t — her life with epilepsy.
“I figured, I’m going to write a book with my personal experiences so that other people with epilepsy and illnesses like mine will at least have something to relate to and be, like, okay I’m not alone,” Sparks said recently.
Today, the almost-19-year-old isn’t just a high school graduate but an author. Her debut book is Just Like the Lotus: A Remarkably Honest Account of a Young Girl’s Battle With Epilepsy.
“Lotuses grow from mud. You can’t have the beauty without the gross,” Sparks says. “The lessons I’ve learned from epilepsy, it’s turned me into a better person — wiser, more knowing, more compassionate, more empathy.”
She can say that now but what she’s gone through has been daunting. Her seizures started when she was 12 and turned her life upside down. The first medication she took stripped away every emotion except anger. There was so much of that, her mother Jennifer had to call the police on occasion because she feared for her own safety. When one officer dismissed her behaviour as a tantrum, she almost went after him.
She would sleep 20 hours a day. She suffered anxiety and depression. She had to live with a webcam in her room so her mother could keep an eye on her. When her mom left her alone in the house, she took the bathtub drain plug with her in case Chiara tried to have a bath, lost consciousness, and drowned.
“The thing is that a lot of people who have epilepsy, all this personal stuff is locked up inside and we can’t express it because no one understands,” Chiara said.
Perhaps her most public seizure came in the last 10 minutes of the last performance of an adaptation of Romeo and Juliet she was acting in with Persephone Theatre’s Young Company in front of a full house including her mom. Production personnel were prepared and reacted perfectly, Jennifer said. But that wasn’t much consolation for Chiara.
“When I woke up from that and realized I had a seizure on stage, I thought I ruined everything, a year’s worth of practise,” she said.
“When happiness started coming back I didn’t know what happiness was. I got scared of it.”
In reality, it inspired the cast to press on with even greater emotion to support her.
“We’ll still discuss it and I’ll say, you didn’t ruin it, you didn’t ruin it,” her mom says.
Chiara’s horse Whisper has been a huge part of her life through it all. Even if she could only visit with her, it made a difference. Once while barrel racing, Chiara started having a seizure. Whisper stopped and carefully walked her back to her mom.
“I definitely don’t think I would be here if it wasn’t for horses,” she said.
Things have improved drastically since Chiara started seeing Dr. Jose Tellez-Zenteno and taking a new drug. Her last seizure was about five months ago.
She says when she started feeling normal emotions again, it was almost overwhelming
“When happiness started coming back I didn’t know what happiness was. I got scared of it. I would actually start crying because I didn’t understand what was going on.”
Out of necessity, the mother-daughter bond has been very strong. Chiara gets tears thinking about it.
“When I was too tired to do things, she was my motivational speaker, she was there to hold me when I was crying. When I was angry, she tried to understand me as best she could.
“We’re both fighting epilepsy and both our lives are hard but it’s different kinds of hard. She has to watch her daughter suffer and I have to suffer with it.”
Re-reading the book recently, Chaira realized there could have been even more in it. So a literaly new chapter seems to be starting as well.
“I think there will be another one,” she said.
Just Like the Lotus is available on Amazon and locally at McNally Robinson. The book launch at McNally is March 22 at 7 p.m., coinciding with Epilepsy Awareness Month. A portion of proceeds will go to the RUH Foundation, Saskatchewan Epilepsy Program, to support the research of Dr. Tellez. Chiara will also be on hand at Purple Day for Epilepsy on March 23 at RUH, SaskTel Theatre.
Source : thestarphoenix.com