How It Took the Right Outside Perspectives to Flesh Out the Most Valuable Parts of My Story
I never thought I would write a book about how it feels to have a progressive muscular dystrophy. I struggled with how to convey the 12 years of misdiagnosis and general mishandling by the medical community without seeming bitter or angry.
(How Poetry Can Animate Narrative Nonfiction.)
I needed to find a nuanced voice to explain the anguish of being in a crumbling body without coming across as a victim or an object of pity. I wanted to instill hope in others going through something that is difficult over a long period of time. I wanted to provide insight to friends and families of someone who is struggling with the unknown. I wanted to provide gentle guidance to the medical community to see patients as people and not their diagnosis. I worried that my story wouldn’t be interesting.
The guidance of outside voices who inhabit the genuine writing space was invaluable.
Those voices said that I had to change the first draft from a long tome filled with stories of events in my life to stories that shared my actual life experiences. They said I had to dig deep. To feel the feels and write them down. To share what I was thinking. To create a story arc. They said that doing these things would create a book that shared me, and not just clever stories from a woman who sits down all the time.
The pain of unwriting all of my clever stories was real.
I had crafted the original 300 pages in 100 days, and another 100 pages quickly followed. I rewrote and honed and polished those original stories and lived with them for five years as they sat with someone who I knew to be qualified in marketing but who also had said she wanted to help get my stories out there. It took digging deep and finding my brave voice to get my book back and accept the $30,000 loss that came from walking away.
It took research to find another company. It took hearing and accepting the hard truth that my original 400 pages was too long and needed significant work. It took sitting with this new information to understand that I was in for a whole new set of rough waters.
I began working with my new project team who paired me with a developmental editor who specialized in memoirs. As I struggled to rewrite 60% of the book in five months, my editor sent me this as encouragement, “I ran across a book on my shelves today and thought of you. In Living Revision: A Writer’s Craft as Spiritual Practice, Elizabeth Jarrett Andrew talks about revision as messy uncertainty, a new way of looking at something (hence, re-vision), and a natural consequence of growth. Yes, revision is hard. But it’s worth all the pain and effort!”
A month later I wrote her back, apologizing for missing the revision deadline and acknowledged that it had indeed been a sacred practice to talk about the impact of the progression of the muscular dystrophy. She replied that the deadline was just there to keep me on track in order to meet the publication date. Rough Waters: From Surviving to Thriving with a Progressive Muscular Dystrophy was released to the public a long six years and five months after the original idea was birthed.
We writers live in our own heads and in our own worlds. We need outside people with experience that we can trust to gently guide us.
My hard-earned advice is simple and practical, especially for memoirists: If possible, find a team who doesn’t already know your story so they can help guide you to find the precious gem that the world needs to discover. An outside POV may well be the one to unearth your innermost POV.
Check out Heather C. Markham’s Rough Waters: From Surviving to Thriving with Progressive Muscular Dystrophy here:
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