This week we’re sitting down with Alison Acheson to discuss her intensely personal story, Dance Me to the End (Touchwood Editions), of a woman who cares for her husband after the devastating terminal diagnosis of ALS.
Dance Me to the End is part journal, part lyrical prose and verse—a meticulous journal of events, musings and poetry that came to you while caring for your husband, who was diagnosed with ALS. When did you realize that this journal would become something more? Was it healing to tell this story?
When I was in the most housebound state of my caregiving time, I looked for a book that would in any way mirror what I was going through. The one book that resonated was Joan Didion’s The Year of Magical Thinking. But her experience was one of sudden, shocking loss of partner—literally, they sat to eat dinner, and he had a heart attack, and she was left scrambling to try to make sense of it all. I did glean from her grieving process, though. Loss is loss.
So I just scribbled, a couple pages a day for the most part. I read fiction to take me out of my house and my head, and I read Mary Karr’s book, The Art of Memoir. It was actually Marty, my spouse, who overheard half of a podcast with her speaking, while we were at DjangoFest on Whidbey Island, WA; he suggested I read her book. I did, followed by The Liar’s Club, her memoir, so Texas-voiced. It was like a blessing from Marty, in retrospect. She includes a list of favourite memoirs, and I ended up ordering most of them, and reading through. In my MFA time, I did not study creative nonfiction, a regret. (Though the amazing Andreas Schroeder read and offered feedback on Dance Me to the End, for which I am so grateful.)
Again, in retrospect, it was almost as if I was working in the direction sub-consciously. I think we do so much of that as writers. I know that through my years of multiple hats (writer, teacher, mother, money-earner), I swear most of my work was sub-conscious, pre-conscious…maybe, in the intense parenting-of-three years, non-conscious. Yes, I’m quite convinced of that non-ness.
By the fall after Marty passed, I’d begun to write pieces of what would grow to be the published book. I still wasn’t consciously thinking “book.” I was thinking “pieces” that people might find useful. Pieces I wish I’d had to read. I was doing that thing of “write the book you want to read.” I was writing for a former me, with a grudge against linear time, and hope that healing and growth can be retroactive.
And for your second question, for that very reason, yes, it was healing to write. It’s as if life-time is not linear, and we can give ourselves a hand, or take our own elbow when we set out, or push ourselves out of traffic’s way when we step blindly into the street. Writing the book—that is, taking the raw material of my journal—and creating something new of it, gave me a sense of the love that was being lived through at that time, it gave me the time and the breathing that I’d needed then, to process and absorb.
One of the most profound takeaways from the book, at least for me, was the heartbreaking but necessary reality of how Marty and your relationship changed, in that prior to his illness, you were spouses, but very quickly you became a primary caregiver—while your own support system gradually disappeared. What would you want other people to know about caring for a terminally-ill spouse, or any other loved one?
Maybe—I offer this tentatively!—maybe caring for another loved one, besides a spouse, is easier in some respects. If it is at all quantifiable. A marriage—by nature of what we expect from it—has its tensions. Whatever is the dark and the light within that relationship is going to emerge as joy and shadows when put to the caregiving test. Add “terminal” to it, and the demands of living without real hope, and it is further stretched. Of course, you do end up manufacturing hope. But if you are unable to live with paradox, it is hard. Hopeless hope. Accepting the unacceptable. However you put it.
There should be some sort of virtual reality that people can put their selves through in order to decide if coupling is really for them—or at least long-term coupling. Know thyself. Know thy partner. Really…talk about not only death and dying, but how you communicate. Ponder, and try to articulate your own boundaries. If it is important to you to hold on to some vestige of romance, then do that.
In the last weeks, my spouse’s cognitive capacity had seriously diminished; we communicated needs by his pointing to actions written onto a large piece of cardboard: “Cover me” or “I’m hungry.” I ended up wishing I’d written “I love you,” and “Thank you,” some human niceties. Or even a lame smiley-face, as smiling is not easy with ALS.
With the hindsight being 20/20 thing… try to secure good carers as soon as possible. My mistake was thinking I could do it all. And I did, really, but with loss. Make sure you get enough sleep, even if that means bringing in someone several nights a week. Here’s the thing: it is easy to give up on finding carers, as it is not easy to find good ones. Especially with a disease with which most people are not familiar.
Rather than a dark and heavy story, Dance Me to the End is light and charming, focusing on the moments of life, of love, and stillness amidst tragedy. Was this lightness present in the book from the first draft, or did it build over time?
The journal is just an ugly read. There is not one sentence from those 600 pages that made its way to the published book. It is difficult for me to read, and I can’t imagine how anyone else could endure it.
My approach was to pull moments and scenes from it, and then recreate them.
As we lived through those days, I should note how I tried for some levity—it was a most conscious effort. Something to laugh at, even if we were reduced to laughing about a fart. So it felt natural to seek the same in the writing of that time.
And halfway through the process, I began to change up pages that were darker, moments that were just too much, and I shaped them into brief bits of verse. I’d battled with present and past tense. I wanted the assurance of past tense, but there were moments that were too keen. So these became both free-verse and present tense, and then it felt natural to use right margin alignment as such moments were surreal, not life as we think we know it, but life on some other side.
It’s key to me, to my work, and even to my teaching, to couple content and form, to let one dictate the other, and push at each other, and find ways to grow together. We made efforts to live for lightness, so it had to push through for the finished pages.
June is ALS awareness month. Learn more by visiting the ALS Association of Canada.