Dance Me to the End: Ten Months and Ten Days with ALS

by Alison Acheson

It can take a long time to come to terms with terminal.

How long, how often, could I be what I needed to be?

in addition to losing my spouse, I was losing a sizeable piece of my self, too.

When he came to bed after me, I wrapped an arm around him. Life was too short.

There was some thought hovering at the periphery of my mind, though, some desire to have lived more fully these past decades. Though I wasn’t sure what the actual enacting of that would have required.

I had that feeling—never far away—of wanting to scratch my way out of my skin.

The sadness deep in my husband was harder to accept, though; his loss was so much greater than mine.

What was the difference between someone who nodded and said “right” and someone who would fall to pieces?

I lived in my house, and saw things in ways I’d never seen before. Something could be from one time, and now felt to be part of another. Things—simple things—began to disconnect. It was unnerving. Disequilibrium. They say that’s the state for learning.

But the consciousness of it all, the directing, was tiring.

My classmate, post massage, told me I was brave. Was I? Or just doing what I needed to do? Was that brave? Were there options?

REMEMBERED THE wish to grow old together; and we did. We just grew old before our time.

Even as I spoke I was so aware of the difference between a grieving person who has lost a beloved suddenly, shockingly, and someone like myself, who has already been grieving for months, who has had more sleep in the past three days than in the past three months, who is no longer in a state of panic.

I hoped he had a good friend.