Under the Cover: Writing grief in Dance Me to the End

October 22, 2019

When author Alison Acheson's husband Marty was diagnosed with terminal ALS, Alison took to writing and reading as a way to cope. In her evocative memoir Dance Me to the End (Brindle & Glass Publishing) she describes the emotional toll of watching a loved one suffer from a terminal disease and eventually die, mixed with the tender moments of laughter and love shared in the final months of her husband's life. Below Alison tells us about caregiving and writing to cope.

 

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If there's a book you really want to read, but it hasn't been written yet, then you must write it. ~ Toni Morrison

I’ve read these words of Morrison’s in the past and ignored the “must.” And felt I had no time for the “musts” of self-care while caregiving: exercise, eat well, sleep adequately. Research on caregivers reports a lack of sleep, no energy to exercise, poor eating habits and—often—an extra layer of alcohol use that turns to abuse.

I wrote.

Two pages a day, the minimum to stay sane. Or to push back against the hopelessness of the ALS diagnosis given my spouse. Any diagnosis that requires 24/7 care is a tough one, but “terminal” has that layer of being on a journey from which you will return alone.

In those daily pages, I wrote about the moments of laughter between my spouse, Marty, and I. I wrote about the minor miracle of food showing up on the doorstep, the green of spring, and about how the winter wind and rain felt to be a better fit, in fact. I wrote about how the house sounded deep in the middle of the night, and what it meant to do long yin yoga poses with my own unhappy muscles at that strange witching time. All the minutiae that kept me going.

There must have been some neighbourhood support group nearby—every hospital and hospice has one. But that would have required finding someone who could take on my newly acquired skills, skills that meant I was The One who had to be with Marty, or hire a fully trained registered nurse. Local health care unit “caregivers” are not allowed to administer a catheter and narcotics. But a family member can.

I wrote every day. My laptop became my therapist, and my champion. It kept me to task. Moments of joy and humour and times of despair and frustration went into it. Pages and pages, over six hundred. The time spent on those pages was time spent expressing the emotions I was experiencing. And like any other time of growth and extreme change, the range of emotion, the daily, even hourly, shifts into 540 degree turns never experienced before. Those turns required absorption and—mundanely—sorting. The writing allowed me to “sort.” What is this? I felt this question in an inarticulate way. Followed by: what is this?

Average time of life post diagnosis for ALS is two to five years. But for Marty, from diagnosis to the end was not even eleven months. Every week there was change. The pace was unrelenting. ALS has something like cruise control: the pace of its onset (how long does it take to diagnose? days, in his case) sets the pace throughout. At that pace, my mind was always a step behind, my body was flagging, and my heart was searching for some direction. In the final five or six months I became housebound, and this caused me to return to my first love: books. In teaching writing for years in an institution, I have—yes—read for so much other than pleasure.

But through those months friends gifted me books they had loved, and I found, for the first time in decades, that I was reading to create some space of wonder for myself, and some sense of the world, and not feeling utterly alone in it. I found myself hungry for words that would let me know that others have been through what I was experiencing. I could not find those words. I struggled to find what I needed, and it didn’t occur to me that what I needed was what I was writing.

I read Joan Didion’s The Year of Magical Thinking, and it did answer my need to read about grief and loss. And a friend brought over a copy of All the Light We Cannot See, so I turned to fiction to be carried away just for a moment. But I could not find the story about the experience of attempting to be both spouse and nurse and living under the cloud of you-are-going-and-I-am-not.

Months after my spouse was gone and my house was different and my life changed, I looked through all those pages, set them aside, and wrote a book for others' eyes as well as my own. Morrison’s must.

 

 

 

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Thanks to Alison for sharing her story with us, and to Tori at Brindle & Glass for making the connection. Dance Me to the End is available now on All Lit Up. 

 

 


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