Dance Me to the End Read online

  ALISON ACHESON

  * * *

  Dance

  Me

  to the

  End

  TEN MONTHS AND

  TEN DAYS WITH ALS

  1.

  Two Years

  Earlier

  * * *

  It’s a warm late afternoon in August

  with an old friend getting married a second time, a good time

  I follow my husband as we trail across the grass

  The wind off the river

  relieves us from sun for a moment

  A sense of homeostasis. I feel

  happy

  I recall one of our boys’ favourite picture books, Pizza for Breakfast, and its closing line about being happy: “and this time they knew it”

  Know happy, recognize it, memorize the feeling, sink it into our bones

  articulate, “This is happy”

  and let the feeling imprint, allow ourselves

  to move

  toward it

  2.

  Goalposts

  * * *

  EARLY SUNDAY EVENING, last day of May, our family doctor called on the landline. On some level, I registered that must mean he wanted to talk with me specifically. He did. He asked if Marty and I could both come to his office at noon the next day. “This sounds serious,” I said, and felt strangely, suddenly, disembodied. He didn’t offer reassurance. Or reason. Just said he’d like to see us both. Together. The Team.

  We ate dinner shortly after the phone call, my teammate and I, out on our deck, our custom at that time of the year, late spring. We started a fire crackling in the chiminea (our outdoor fireplace) as it wasn’t yet summer warmth.

  Then I made my first mistake. So soon, so quickly. I said that Dr. K would like to see us tomorrow. “Together?” Marty asked. He’d gone into the doctor’s office the previous Wednesday with questions about why he was experiencing a challenge just hoisting a speaker at his last gig, why his guitar was ponderous after a night of playing, why those muscles had been twitching oddly in his upper arm in the past while. For some time he’d struggled to play the more challenging gypsy jazz numbers he so loved. Thought it was arthritis in his hands.

  He’d had tests. Short days ago. The import of a doctor phoning on a Sunday hung over us.

  “He wants to see both of us tomorrow?” he asked to clarify.

  “Tomorrow,” I confirmed.

  Did he look at the fire? Did he continue to look at me? Did he blink? Did he take a bite of food? I don’t remember. But I do remember that then he said, “So why are you telling me now? Why didn’t you wait until tomorrow?”

  In that moment, with those words, I could feel some almost imperceptible shift.

  I was the player running away with the ball. I’ve never been athletic. Anyone can tell you: Don’t hand Alison the ball. She won’t know what to do with it. But there I was, leaving him behind, streaking off to some other place. No one cheering. No sense of team. Maybe going in the wrong direction. I could be doing just that; I wouldn’t know. No time to stop and ask for directions. No coach. No goalposts.

  3.

  Black and

  White

  * * *

  MY EARLIEST MEMORY of television—like many Canadians—was Mr. Dressup, with his treehouse and his puppets, Casey and Finnegan. The television, a wooden box on legs, sat in the middle of our unfinished recreation room, concrete floor covered by a threadbare grandma-hand-me-down rug with raggedy fringe edge, and an ancient, fat couch that pushed my brother and I into L-shapes, legs sticking straight out on its deep cushions. We had Mr. Dressup and three other channels, one American from over the nearby border. Rabbit ears crowned the box.

  We watched little. In fact, after Mr. Dressup we went without for almost a decade before we had another black-and-white, this time, a six-dollar purchase from the giant Sally Ann store in New Westminster, where my mother bought it on a whim at my older brother’s urging. My older brother longed to see a hockey game, he said. He had all the convincing push of a television lawyer. So we had hockey. And Little House on the Prairie, and the odd ancient matinee. I remember only one really, old even then: The Pride of the Yankees – The Life of Lou Gehrig. Its images filled my head, and haunted me in the way that television haunts those who are not inoculated against its visual power. I remember scenes of the beloved first baseman fumbling with a bat, and stumbling, and bits of his famous speech about being the luckiest man. My father must have explained to me what the diagnosis meant, because the film didn’t go that far. I absorbed the information that the disease rendered the body inert, and one’s brain became trapped inside one’s body; that part stood out for me. Lou Gehrig’s disease ended communication between brain and muscle. Eventually one could no longer move or speak, breathe or eat.

  I knew that it moved quickly—though how quickly, I wasn’t certain. I remembered thinking that this must be the worst way to die. I knew doctors had few answers, even yet, all these years later. It was not curable. I knew about Lou Gehrig’s disease, about ALS, even though I could not have said what the A or L or S stood for.

  More than thirty-five years later, our family doctor sat us in his office that Monday, June 1, 2015, and he said, “It could be MS, it could be ALS, it could be...” I didn’t catch the third possibility. My teacher-brain thought, “He’s done it—he’s used the sandwich approach. He’s put the real diagnosis in between two pieces of white bread to try to make it go down.”

  ALS scared the shit out of me that 1970s Sunday afternoon in my parents’ house on the second-hand black-and-white. It still did.

  Where was Mr. Dressup now, when I needed him to draw a picture with those wax crayons of his, some picture that would help me make sense of this?

  Amyotrophic

  Lateral

  Sclerosis

  4.

  On Being

  a Team

  * * *

  SOMETHING HAPPENED A little more than two years before that first of June.

  After years of child-raising and devolving into that take-it-for-granted state that marriage frequently does in spite of best intentions, my spouse of almost twenty-five years and I fell in love.

  Maybe it had something to do with friends’ relationships doing otherwise. Or something of seeing the pain that middle-aged people can inflict on each other. Or maybe a curiosity about those around us who managed to hold on to each other and work through. Hard to say exactly what is the nature of such glue. Though it might be worth the analysis.

  We spent time together as we hadn’t in so long. Friends who knew us as people with rather separate lives—no, very separate lives—were surprised to see us together. We talked more, we laughed more, and we had to change our sheets frequently. We talked about growing old together as something to look forward to. We were a Team. An invincible team, I thought.

  The Team: First, Marty. Short, five foot seven, quick on his feet, animated. Charismatic, even. Eyes like Buster Keaton. A musician who made most of his living from teaching guitar, occasionally bass or banjo, to local young people, or older people with ageing dreams, and groups of school kids. He earned the rest of his living with frequent gigs. He was well-loved in our community, and known for T-shirts with funny words or visuals, and quirky shoes.

  Then there’s me. Not so quick on my feet, even clumsy at times, and not so animated. Recovering introvert, in truth. Writer. Writing teacher. Mother of sons. Sister of brothers. Former tree-climber. With a thing for the warmth of fires crackling or hissing at my feet.

  At that point in time when the youngest
child is on the cusp of adulthood, marriages can go one way or the other. I felt fortunate ours went as it did. This second chance—that’s what it seemed—taught me not to take a relationship for granted. It’s so easy to get caught up in the dailies, and lost. I never wanted to be lost again. To remember what is important, people and connection above all, had become a mantra even before the first of June. I was ripe for testing, not that that’s how I would have seen my life right then.

  There are perks to being a Team, and the most sizeable is a sense of not being alone. As aloneness is the human state, if you have a good partner, you tend to feel you have escaped. There’s a bit of wonder in that, at moments, maybe even something lacking humility; we’d done the impossible, beat the odds, the ugly, painful, and real odds.

  I believed I knew a lot about ageing relationships.

  5.

  Heroes—Just

  For One Day

  * * *

  MY OLDEST SON spent many young hours as Batman. I made him a cardboard mask of cereal box, coated with thick black wax crayon. It’s in the scrapbook now, the elastic to hold it in place over his face slack, and the cereal box card soft as flannel. A friend made him a cape with a cutaway scalloped edge, and I have photos and a strong mental image of him standing, red curls exploding around the mask, arms crossed solidly over his chest as preschoolers do, with grasped elbows, and with his bottom lip out slightly—enough to let you know not to give him any Trouble.

  We do like to be heroes.

  Days in, after diagnosis, I made a note in my journal of laundered bed sheets, and how it feels at the end of the day to slip into them—so much better. As if that would mend. Or put cape and mask on me.

  This is what happens, with a diagnosis. Or at least, this is what happened with me: I heard the doctor speak, I went into some space of shock. We began to feel our way, and numbness set in, almost like being inside a hamster ball; I could see out, others could see in. Nothing could really touch me, though, and sounds were muted. I didn’t eat much the first day, beyond the childhood comfort of tomato soup and a nibble of grilled cheese sandwich. But deep inside me a wee character had pulled on a cape, too, and her own little Batwoman mask, so tiny I didn’t see her at first, but she began to grow.

  She thought that things like clean sheets made a difference.

  6.

  Preliminary Diagnosis

  * * *

  WE CLUNG TO the word “preliminary” and the kids—told later—did so too. I also knew the prognosis; maybe Marty didn’t know about that as much as I did. The blessing of shock kept the knowledge ever so slightly removed. That’s what shock does. Lets the knowledge leak in just a bit at a time.

  Later that afternoon, that very first Monday, I took Marty a cup of coffee in his teaching studio, and found him staring at his computer. “It says three to four years,” he said, wonderingly.

  “I don’t think you should do that,” I said. “Don’t research online. Just ask Dr. K your questions. Or I can look up stuff.”

  He closed the page, took the coffee. Said he would prepare for his afternoon of guitar students, and that I should go do what I had planned. He stood and we hugged.

  “We don’t know yet,” I reminded him. “Not for sure.”

  THE MORNING AFTER the appointment with Dr. K, while we lay in bed, I put my hand on Marty’s bicep and felt the fasciculations of the muscles—twitching and pulsing, just as I’d felt for the past couple of months. I pulled my hand away, repulsed. Felt badly. Wrapped an arm around his midriff instead. It occurred to me then that we were still us. Even as my mind struggled with the rest.

  The F. Scott Fitzgerald quote came to mind: “The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function.”

  That was my truth at the moment. Or at least, the piece about trying to hold on to two opposed ideas, though I was not certain what the two ideas were.

  The sentence that follows in the Fitzgerald quote: “One should, for example, be able to see that things are hopeless and yet be determined to make them otherwise.”

  What was otherwise? Hope? Acceptance? Yes, these two could push at each other.

  Little Batwoman grew.

  I KNEW—REALLY—FROM THE moment the doctor said ALS that we were facing terminal. After that, it was confirmation, and coming to terms. It can take a long time to come to terms with terminal.

  7.

  Old Vows

  * * *

  THE DAY AFTER that Marty awoke with a sob. The feral sound made something in my gut curl. It made my thoughts scatter, and I tried to retrieve them but didn’t know how to do that. I wrapped an arm around him, but he loosened my hold and went to shower, and I lay in bed thinking that we were not even forty-eight hours in, and already I couldn’t think what came next, what to do next. All that came to mind: This is the shittiest thing ever.

  He came out of the bathroom, and dressed. Sat on the edge of the bed, and said he was certain he did indeed have ALS. Dr. K said that being overly emotional was a marker, maybe the marker, for the disease. Emotional lability, a result of frontal lobe dysfunction. Unlike most GPs, our doctor had had more than one previous patient with this disease.

  I remembered then that when Marty returned in February, from a trip to Mexico with his brother and cousin, he was unsettled by his own tears at the airport. At the time we talked about how perhaps it was ageing, and something of recognizing what others mean to us. But I recalled how this apparent betrayal of his emotions had shaken him. He didn’t like to be openly emotional.

  Then, before leaving the bedroom, he said he didn’t want to be a burden. I said that wouldn’t happen. I meant it. I couldn’t imagine that he would be a burden. Or if he became such, the work involved wouldn’t feel to be “burden.” It would simply be. It would be part of choosing to spend lives together. It would be the “in sickness” part of the vows, though I honestly couldn’t recall what our Unitarian vows had been; it didn’t matter. My understanding of vowing to spend lives together included this. Simultaneously, I was grateful that we’d come to mean more to each other in the last two years. The time of falling back into love, remembering where we’d come from—indeed, feeling it to have been something it never was even in younger years—all those months had been building strength for this.

  After he left the bedroom to go to his studio downstairs, I lay immersed in thoughts about “burden.” And came to the conclusion that while I didn’t know how to navigate this path yet, I would figure it out. This could be the opportunity to show how much I loved him and what he meant to me. I felt a sense of relief when my mind found this as an answer, and fastened my being around that word “opportunity.” Perhaps hope could win over numbness.

  When I got downstairs, he wasn’t yet working in his studio; the vacuum roared in the living room. He did not vacuum on a regular basis. But when he was anxious he would, or he would sweep or dust.

  Usually the anxious cleaning bothered me. He would do some furious dusting before our annual Christmas music party, while I finalized food, and food always seemed so much more significant than dust that it would leave me feeling agitated. Or the act of sweeping while his sister was dying, and I tried my best to convince him to buy a plane ticket to Regina to be with her. He’d swept the entire deck, an otherwise useless task, without speaking a word.

  But that day, two days after the preliminary diagnosis, I shut up and let him vacuum. Maybe after he turned it off, set it down, left to work, I’d take it up myself and do it all again.

  Later, going grocery shopping, I cried backing out of the driveway. Somehow leaving my home, even for an hour, seemed not right. For one, it was so ordinary; how could we do the ordinary? It was also a leaving. Everything felt to be a leaving. Everything felt to be extra-ordinary.

  Driving to the store, I saw an
old couple, greyed, holding hands as they walked the sidewalk. I’d had grey hair already for years myself, but Marty’s hair was still a shade of ginger, and I realized I’d been looking forward to seeing if he would age as his father had, with a gently retreating hairline. Indeed, I was looking forward to Future. To Growing Old Together. To being sixty-four and will you still love me, and all. Being sixty-four was still more than a decade away for me. Marty was fifty-seven.

  Groceries in the backseat an hour later, and I spotted the smoke shop. In the past eight or nine months, I’d nagged about too much drinking, now realizing this had not been about alcohol amounts but about the neurological response to his usual two post-golf-game beers. All the hours I’d worried about his smoking over the years. I’d never been too good at nagging, and the worry had cost me.

  I went into the smoke shop and bought a cigar that cost about as much as steak dinner for two. Wished I’d done this for Christmas years ago. He did like a cigar with those two beer.

  I went home, packed things into the fridge. How normal it felt. And did not feel.

  Pulled on yoga pants—let’s keep some normal going—prepped to go to class.

  Marty came into the kitchen to refill coffee, and we hugged, an almost normalizing hug before I went to the leisure centre. I worked to keep a light tone to my voice; was that the right thing to do?

  At the end of yoga class, lying in savasana, I cried.

  A portrait of a day. An early day in a new life.

  WHEN I SAW our doctor, one-on-one that first week, to ask questions I didn’t want Marty to hear, there was a moment when he said his name—“Marty”—and I heard it almost as the first time someone said “your son” to me after the birth of our first child: a moment of recognition of connection. A moment of a type of pride. Not unhealthy pride. How to explain such a moment, how to explain feeling tears over simply hearing a name.