Introduction

No cure waits in the wings, no treatment to slow its terrible march. Within five years, ALS (aka MND or Lou Gherig’s Disease) claims most, stripping away movement, dignity, personhood, breath. A thief working in slow motion, taking a finger’s flex here, a toe’s twitch there, until even the eyes grow still. What remains is a mind trapped in motionless flesh—neither fully here nor gone, but suspended in twilight, like the pause before dawn when the world holds its breath.

Few receive such a peculiar gift of living so long in these borderlands. Unlike a gunshot, heart attack, or even cancer that may move a person relatively quickly across this boundary, ALS lingers here like the endless white night of a Spring forest before sunrise warms the earth.  Unlike stroke, dementia, or pain that steals the mind, most people with ALS remain lucid spectators of their own gradual end.

In the most literal sense, the disease seats you, stills your hands, and confronts your still active mind with constant reminders of dissolution. An impatient dance partner, tapping your shoulder – remember death.  A twitch, a stumble— remember death. A fall, a cane— remember death. A button that won’t yield, an itch beyond reach—remember death. Wheelchair, shower chair, these words now I write on my screen using only my eyes —remember death. 

Depression perpetually lurks at the edges: a cave mouth. It beckons but only leads downward into darkness, sharp stone, and the suffocating earth. Each dawn, as I watch the wooded valley where I live slowly illuminate, brings a battle against entering that cave. Thoughts of the end often intrude, uninvited guests that overstay their welcome, whispering plans to hasten it somehow.

Yet when I succeed in pushing back the darkness and turn my face to the rising light streaming through my window, a wonderful clarity of mind emerges. It’s a gift, this constant reminder of mortality. A terrible, beautiful gift that strips away the illusions we build around ourselves, like wind scouring a mountainside. In the face of certain death, pretenses scatter like autumn leaves. What remains stands raw, real, essential, unified, luminous as gemstone.  

Here lies the paradox: as death takes, it gives.  It gives perspective, clarity, a fierce appreciation for the fleeting beauty of existence.  I am more awake, more present, more mindful than I ever was in the rush and tumble of my pre-diagnosis days.  Now, the world reveals itself in exquisite detail—the intricate veins of a leaf, the complex harmonies of birdsong, the infinite shades of green in a summer forest.  

For the last three long years, I have watched from this place between living and dying as the seasons wheeled past. Cardinals flash red against green leaves, disputing territory. A heron stalks patiently in the stream. Deer grow from wobbling fawns to next year’s mothers. Bats exit the eaves at dusk to hunt in a world they know as sound. In Spring, the woods bloom to make the seeds fed by Autumn’s fallen leaves. Summer nights thunder with the symphonies of treefrogs, Katydid, and Cicada.  Winter nights are silent as the snow, except for the lonely voice of an owl. In this slow fade, grace reveals itself. Time seems to pool and eddy, subject and object merge – so endlessly interconnected that their arbitrary boundaries are emptied of meaning.

As my body gradually fails and of death draws slowly nearer, my eyes are increasingly drawn away from the shadows of this fading night.  In this long twilight before dawn, I may not yet feel the warmth of the sun, but I am beginning to be able to see. 

So I write, while ability remains. This is my message in a bottle to you from a strange shore that you must also someday cross. Open it and remember death, yes.  But in remembering death, remember life. Let mortality sharpen your senses, widen your mind, deepen your loves, kindle your wonder. For we all dance with death. Some just hear the music more clearly.

As daylight grows and the last stars fade from the sky, gratitude fills me. For this life, with all its thorns and blooms. For this death, approaching surely as morning. For this moment, luminous in its passing, like dew quivering in perfection on morning grass.

Remember to live.