Conference Was a Reminder of Why We Must Continue to Create Own Stories

Last week, I attended the Association of Writers & Writing Programs (AWP) conference in Washington, D.C. I had the opportunity to meet many fine folks who are hard at work creating everything from alphabet books for children to poetry protesting xenophobia. I attended panels on editing, writing micro-fiction, and creating a sense of place using imagery. I listened to some amazing writers—Ann Patchett, Karen Joy Fowler, Jennifer Egan, and Chimamanda Ngozi Adichie, to name just a few—discuss the craft and what it means to write well. And I was happily surprised to find there was more than one session focused on writing and disability.

There were panels about health, illness, and injury, building disabled writing communities, and how disability influences the craft. I was honored to watch five deaf writers perform their short fiction and poetry, and got the chance to chat with other writers who deal with every kind of physical and mental challenge imaginable. It was very inspiring to see their courage and commitment being applauded.

One thing I didn’t expect at these panels? To discover another writer who lives and works with multiple sclerosis. After all, it affects roughly 400,000 people in the United States. That may sound like a lot, but compared to, say, diabetes (29 million,) schizophrenia (1.5 million,) or inflammatory bowel diseases (1.6 million,) it’s easy to see how relatively rare MS actually is. For that reason, it is passed over in popular culture. In fact, I can’t think of a single work of fiction I’ve read that features a multiple sclerosis patient. Ditto for movies or plays. There have been a few characters, like President Josiah Bartlet (played by Martin Sheen) on The West Wing, who have MS, but the disease just doesn’t get a lot of screen time. It isn’t sexy enough, I suppose.

That’s why I was so pleased to hear Laurie Lindeen speak about her memoir, Petal Pusher, on a panel called “Body of Work: Exploring Disability, Creativity, and Inclusivity.” Here’s what you need to know about her book (taken from the author’s website): “Petal Pusher takes readers on a stirring journey across rock and roll, from the big-haired 1980s to the grunge-filled 1990s, when Laurie Lindeen brought her all-girl band, Zuzu’s Petals, to compete in the indie rock arena. But unbeknownst to her friends, Laurie has a secret in her past—a diagnosis of multiple sclerosis that fuels her passion to make it big on the local, national, and international rock scene.”

The instant Ms. Lindeen began describing her symptoms—weakness leading to complete paralysis on one side of her body—an eerie feeling came over me, a sad sense of knowing I wish I didn’t possess. It took a few minutes of reading to get all the facts out there, but I knew exactly what two words were going to come out of her mouth at the end. Why? Because her story, in some ways, is mine. Is yours. Is your parent’s. Your sibling’s. Your friend’s. Your lover’s.

It’s the same for every person who has stared MS in its gnarly face and come to terms with the fact that life will be irrevocably different going forward because of it. While each of us has details—Molotov cocktails of symptoms, failed diagnoses, and treatments—that make our stories unique, the bare bones of our plots remain the same. We were blithely living our lives, ones filled with big plans and goals, until WHAM! MS hit us like a speeding truck and changed everything.

But we can’t let that stand.

If you’re a musician, fight to keep playing. If you’re a painter, keep at those canvases. If you like to cook, keep whipping up yumminess in the kitchen. You can’t quit creating, building, or bettering things just because of the unwanted guest who’s squatting in your nervous system. Sure, you may have to put things on pause from time to time, or change the way you go about doing what you love, but that doesn’t mean you have to quit. If, for some reason, it does come to that, find a new goal, a new passion, and go after it with everything you have. That’s what makes a life worth living … and worth reading about.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.