by Dan Simpson
Most alibis for not writing are really just excuses. I’ve given other “good reasons” for my tardiness in writing this blog. I have a different one this time, but one I know to be clearly acceptable.
My twin brother Dave has ALS. That’s right, Lou Gehrig’s Disease.
He started to think something odd was happening to him a year ago. After lugging two huge suitcases on a 14-hour train trip from Philadelphia to northeast Georgia, spending that first day in Georgia, mostly on his feet, setting up his writing studio at The Hambidge Center, then the next few weeks writing his ass off, he went for a hike with another artist. They hadn’t gone ten minutes when his companion said, “Am I going too fast for you?” If you’ve ever walked with Dave, you know he could leave most people in the dust. Now, no more. Dave replied, “I know I’m not in the best of shape, but I didn’t think I was this far out. I’m winded already, and my legs feel rubbery.” They headed back to his studio. He finished out his stay, keeping fully in the present, thriving on conversation with fellow creators, and making great headway on his one-person play. But when he got back home, the months of doctor visits, lab work, MRI’s, and muscle tests began.
The diagnosis of ALS is really a non-diagnosis of anything else. Once they rule out Lyme’s Disease, all kinds of auto-immune diseases, Post-polio Syndrome, reactions to medication, and a host of other maladies, they declare ALS the winner by default.
I continue to write, even though it hasn’t been in this forum; it’s one way to deal with the heart-break, the abject terror and grief. I’m keeping a journal about Dave and me. But I haven’t known what to do about outing him on the web. Blogs like mine have something in common with memoir. By their very nature, they focus on the perspective of the person writing. I want to write about Dave. I’ll even admit that I want to, partially for therapeutic reasons. But not solely. Not even mostly. As a writer, I bear witness, I keep a record. When something this major happens to me or mine, I want not to have to keep secrets. I want to be open with others. True, I could simply talk, and if I didn’t feel the need to bear witness or keep a record, if I didn’t care about the kind of precision and clarity that writing exacts, simply talking would be fine. Still, I’ve held off writing about this in a blog because I wanted to take Dave’s wishes into consideration—how, when and to whom to reveal what’s happening to him. I knew he recoiled from some generic tweet or Facebook announcement to the world at large. I’m only writing this now because most people close to Dave already know, have already heard directly from him or by word of mouth through his circle of family and friends. (If you’re close to Dave and this comes as news to you, I’m sorry. I know it’s not the best way to hear it.)
At any rate, this whole situation, in addition to much more significant questions and dilemmas (think life and death) it has raised, poses some thorny questions and issues about writing: questions about one’s motives for writing memoir and other personal genre, about when and how to reveal the truth, and about who gets to tell whose story. I still struggle with all of this, not only here, but in the memoir I’m working on and in the poems that have some basis in the facts of my life.
I love keeping the Journal of Dave. It helps me clarify. Crafting my thoughts helps me order the chaos. Also, as a memoirist, I hope (and I know this involves a certain amount of ego) that what I write could touch someone else, could provide them with something useful. Maybe I’ll share some of the journal, someday, but I’m thinking I’d want to talk to Dave, first. Especially at this time in his life, I think he ought to be in the driver’s seat.