During the spring of my junior year of college, I penned the first chapter of a novel for young adults for a class assignment. I stayed up all night to write it just hours before I had to turn it in – and I’d been given nearly the whole semester to work on it – so at first, I hardly expected it to go anywhere. But after sunrise, when I read what I’d written, I discovered I had something good on my hands. So I took the book on as an independent study project during my senior year and churned out close to 200 pages – a chapter a week.
When I graduated, I’d finished about two-thirds of my novel and had the last third written in my head. But when I got back to Charlotte, I started working full-time in public relations and marketing, coaching a soccer team that traveled on the weekends, covering sports for the local paper and planning my wedding, and the book sat on my hard drive…just sleeping, I told myself. I vowed to find a way to finish it as soon as I got married.
But then of course, John and I hadn’t even finished writing our thank you notes when my family got Taylor’s Batten disease diagnosis, exactly one month after the wedding.
In the book, the main character’s mother is diagnosed with terminal brain cancer.
When I learned about my sister’s illness, I thought that maybe we had enough non-fiction brain disease to go around. So when friends asked me about the book, I told them it’d been a nice ride while it lasted, but the ride was over. And I traded in those weekly chapters for (almost) weekly blog posts about our fight against Batten disease for the next six years.
A few months ago, I was up late (like tonight), and before I realized what I was doing, I pulled up my manuscript and randomly scrolled to page 136. Amazed, I saw that I’d gone directly to the moment in the story when, for the first time, the main character fully comprehends the strength of the enemy her family is up against. What transpires is a raw, intense night that changes the lives of the central character and her family forever.
Sometimes I wonder why my book took the twists and turns it did. I wrote most of it, including that chapter, at 21. My grandfather died of heart disease during my ninth grade year, but otherwise, I didn’t have experience with tragedy. I’d never heard of Batten disease, though the monster hid unseen in my little sister’s genes even then. I didn’t really know that much about loss.
When I read that chapter, I suddenly knew: I wanted, NEEDED, to finish the book, regardless of the non-fiction brain disease that now wreaks havoc on my real-life family every day.
When I wrote that chapter nine years ago, I had to imagine how my characters would feel.
I won’t have to use my imagination now.