In reaction to the intense loneliness that accompanies learning that one has an intractable and sometimes potentially fatal disease, Debra LaChance took an unusual, healthy, and inspiring tack: She started a publishing company and a nonprofit.
For the past five years, LaChance Publishing and the recipient of its net proceeds, The Healing Project, Debra's brainchild that she happened upon while absorbing her diagnosis of breast cancer, has literally been giving voice to the stories of people with disease.
Voices of Multiple Sclerosis is the seventh in the series (Voices of Alcoholism, Alzheimer's, Autism, Caregiving, Breast Cancer, and Lung Cancer have preceded it).
It's not easy to write about illness. Writing "Feeling Numb," my essay, which originally appeared in Ars Medica and whose excerpt appears in this volume, was the second most difficult writing I can remember (the most, my mother's eulogy). I never wanted to write about it, recalling the details too painful, waiting for the words to come close to excruciating, but, at a friend's urging, I forced myself. When the first draft was done, written by hand, itself a departure from nearly everything I've ever written, I put it in a pile of unfinished material (now about a foot tall) and tried to forget about it.
Then I saw a notice in Poets & Writers, a call for submissions for a collection of essays on MS. I dragged my scribbles out of my own slush pile, wrote and rewrote then sent it in. Eventually, as is the way of waiting for acceptances, one arrived.
Thanks, LaChance, and thanks, Victor Starsia, the publisher of the series. My piece is one of nearly three dozen, whose themes capture the sweep of the "problem" of MS--from The "Medical Overview" by John Richert, M.D., head of Research & Clinical Programs for the National MS Society to the obligatory (she's a celebrity) and moving (she's really lived it) account by Teri Garr to a series of essays grouped by their commonality ("I Have MS," "Now What?," "Living with MS," "The MS Family," and "The Gift of MS.")
I took the title of this post from Dr. Richert's piece, where he very economically explains the disease and points to its core: the body mistakes what is itself for what is not itself. That's largely the way its symptoms make one feel--how can I not feel what is nerve? How can who I am be not who I am, who I've always known myself to be?
The idea behind these books makes sense--for those suffering, for those who suffer because those they love are suffering, for those who treat them. They are excellent outlets for writers (and non-writers) as well. Some pieces in this volume read like poetry, others like diaries, together, the poetry of illness, despair, and hope, pathways toward meaning. Highly recommended, which is why UPI ran a feature on this book, Library Journal recommends it, and I suggest that you buy it for all you know who are touched by MS.
UPDATED: Links to posts by other authors in the collection:
Off-Topic: Non-profit MS anthology release -- Rachel Pollock
Exclusive Interview with Dr. Terry L Wahls, a Doctor with MS -- Diane J Standiford
No longer silent -- Caryl Hunter
"The story" -- Terry Walls, MD
"New piece in Voices of Multiple Sclerosis" -- Marie Carter