It’s My Life

March 4, 2014 at 12:01 pm (Uncategorized)

I think I’ve finished the first draft of the first chapter of my book. Actually, it’s my third draft of that first draft, each covering the same time period. But it’s the first draft of my memoir with its “new” (over 18 months old) structure.

Writing this book is the one of the hardest thing I’ve ever done. It’s not just that it’s difficult as a craft and a punishing amount of work. Stringing together a long narrative, trying to develop themes and characters, keeping track of what I want to say and what I’ve already said are all new to me. I’m an essayist and a journalist by training. I feel like I’ve been dropped into a maze, blindfolded, with a broken compass all I have to get me out.

“Have faith in yourself,” I tell myself. But faith has never come naturally to me. Nor apparently does self-confidence. It feels like every word is shit, that my dialogue is clunky, that the whole thing is ponderous and boring.

Without faith or self-confidence what do I have? Grit—the same thing that propels me through two chemotherapy infusions a month and periodic weeks in the hospital. I have to write this book. I feel like I can’t move on without writing it. I’ve thought about it, dreamed about it, talked about it, worried over it. I can’t cut my losses and start something new. I just can’t.

I recently finished an essay in the New Yorker about Diana Nyad, the 66-year old woman who successfully swam from Cuba to Florida on her 4th attempt. She was 30 the first time she tried—and failed—to make the swim. “You’re never too old to chase your dream,” she said, when she stumbled out of the ocean, victorious at last, after swimming three days and three nights in the open sea. She also noted that she’d gotten kind of stuck before she was able to finish the swim. “I was very engaged in examining the past,” she said.

Why is it so important for me to write this book? Some of it is that I said to myself that I would, and I’ve dreamed of doing it – and of being done with it. I’m 42 years old with a chronic, sometimes debilitating disease. If not now, when?

My progress hasn’t been slow because I’m lazy. Or at least not just because I’m lazy. Since August, I’ve been in the hospital for 10 weeks, much of the time in so much pain and on so many pain medications that I was lucky to be able to remember my own name. I was not in writing shape. For the past four years, I’ve been getting at least monthly doses of one kind of chemotherapy or another. There are days when I’m too sick to get out of bed, much less write. Sometimes, these all seem like very reasonable reasons to give up on the book. But they’re not. My book isn’t simply about finishing a task I set out for myself. It’s not just about being gritty, or not letting the disease get me down.

Writing this book is about writing my own story. In darker moments I believe the sarcoidosis has taken the last 10 years from me, that one day I was a new mother with my life getting started, and the next I’m a middle-aged semi-invalid with a lot of broken dreams and unmet goals. This can’t be my story. Writing my book is reclaiming, disentangling my story from the illness’ version of me. Writing my book means that the last decade wasn’t solely about gaining weight, visiting doctors, watching helplessly as the disease flitted from one organ to the next. In writing my story, I can make my own meaning of those years. If I’m good enough and diligent enough I can convert them into something beautiful—into something that grabs at the hem of art.


  1. Randy Bekkedahl said,

    Rebecca, you’re right—have faith in your ability as a writer. I have read a lot of writer’s work over the years through my critique group and the Authors of the Flathead, and I can tell you without hesitation, you are a writer. A good writer. And I don’t get to say that very often. In fact, there is only a handful of writers I can say that about.

    I also know what you mean when you say you are often “not in writing shape.” I’m in the same boat. I’ve always admired President Grant who wrote his own biography while dying of cancer. How the hell he did it is beyond me. I find myself in pain on a chronic basis and I find it very hard to concentrate, which is needed for writing, at least it is for my writing. Or I feel fatigued and so tired I can’t stay awake, so I nap for hours on end. And I think, I should be writing, but I can’t. I’m hoping this new medication (Cimzia) will help, but I know the chances are slim, but it keeps me going. Anything in a storm, right?

    Keep up the good work. You made a believer out of me.

    Randy Bekkedahl

    • Rebecca Stanfel said,

      Hi Randy,

      Thanks for your kind words about my writing. I’ve got to tell you, writing this book is a whole different kind of monster than anything I’ve tried before, and it really helps to hear positive feedback.

      I know how hard it is to write when you’re exhausted or in pain. Sometimes I think it’s important to take writing *off* the table, when it’s just not possible. That way, there’s not the avalanche of guilt for not writing when it’s not humanly feasible to write. I’ve also been having luck with setting 1/2 hour as my goal on days I’m feeling OK. I’ve been surprised at how much I can accomplish and how much better I feel about myself if I can make it through 30 minutes. But sometimes not even that is possible.

      Hang in there. I’m keeping my fingers crossed that the Cimzia will help. Yes, anything in a storm.

      Take care,

  2. Amy said,

    You DO have grit girl. And the last 10 years have transformed you: into an amazing, brave, strong, beautiful woman. You were wonderful before you got sick, and you have become more so. Love you my friend. So happy you are able to write!

    • Rebecca Stanfel said,

      Thank you, Amy, You have been part of the transformation. Thanks for sticking by me through it all.


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