Living with a dread disease
Darcy Wakefield had worries in 2003–a boyfriend had just dumped her, for instance–but living was not among them. "I assumed that if I flossed my teeth, ate healthily, worked out, and didn't smoke, I'd live into my 80s, like both of my grandmothers," writes the 35-year-old Maine native in a new book. "Being diagnosed with a terminal illness has taught me that things aren't quite that simple."
In I Remember Running: The Year I Got Everything I Ever Wanted–and ALS (Marlowe & Company, 2005), Wakefield writes about the time after 2003, when she was diagnosed with amyotrophic lateral sclerosis, the disease that remorselessly wastes away a person's muscles until they are completely paralyzed, though the mind remains untouched. It has no good treatment or known cure. Wakefield also writes about finding, during that same period, the love of her life, Steve, getting pregnant, and welcoming their new baby, Sam. In a series of short essays crafted into a sort of diary, the former English professor writes elegantly about balancing these gains of love and spirit with the losses of her body. "I'm told," she writes at one point, "that optimism helps heal. The optimism I have no problem with, especially now, knowing that my body, even with its death sentence, is nurturing a life." But at another time, barely able to walk, she writes, "I remember running. I remember running like I remember the sun-filled beach days of my childhood. I remember running like many remember their first love, their first kiss, their wedding. I remember running and feel the ache of absence, the heavy reminder that my life will never be the same again. I am continuously mourning running." Now unable to type or speak clearly, Wakefield chatted with U.S.News & World Report via E-mail, using a computer program that types a letter when she stares at it.
Did you write this book as a diary?
I didn't write it as a diary–I had a diary, one for the diagnosis and a later one for the pregnancy. But this was definitely not my diary. Most of the chapters were written in rough draft around the time they happened and revised later. The last chapter [Sam's birth] was written two months after it happened. I wrote the second-to-last chapter, "Channeling," with one hand, praying all the while that the ALS wouldn't progress any further. It did, and I wrote the last chapter with the help of two women in my writing group. I dictated, and they typed.
At the end of the book, after Sam is born, you write about losing your voice and the use of your hands in a tone that is much calmer than the one you use earlier in the book when you write about your difficulty walking. Was there a change in your attitude?
I think there was a change in my attitude–I have aged/changed so much since my diagnosis. I was looking at a picture of me and Steve the other day, and I thought, "My God, we look so young." The picture was taken 2½ years ago–when we began dating. I feel like we are a lot older and wiser than we were at the time of my diagnosis. I will say, though, that the dread is worse than the loss. I really dreaded losing my hands, but now that I've lost them, it doesn't freak me out as much because I am freaking out about something new, like the loss of my neck muscles or something like that.
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