Introduction: Third Year

The valley marks my third winter of loss. Each week brings another surrender, as quiet as falling snow. 

ALS moves like frost spreading across a window pane. It claims a finger’s curl here, an ankle’s flex there, until even the eyes grow still. The mind stays sharp as winter sunlight while the body settles into stillness, like a pond caught between ice and flowing water.

What started as a stumble in my right foot has grown into a patient hunter. My legs rest useless in the wheelchair, feeling everything, moving nothing. The disease, hungry for more, reached toward my arms. Now only enough strength remains to guide my electric chair through familiar paths. A speck of pepper or dry bread can seal my throat in a muscular spasm that passes before I loose consciousness, but makes the process of eating unpleasant by its threat. Breath comes harder these days. Some mornings, my voice fades like mist.

Daily life is often an exhausting battle – one I am destined to lose. With my hands rendered useless came a mortifying surrender of the most basic human functions. Hygiene. Dressing. Feeding. Worse. Each day brings a fresh mourning for the independent, capable man I once believed myself to be.  Every day, I feel the slow erosion of self.

Depression perpetually lurks at the edges: a cave mouth, perilously tempting, yet only leading downward into darkness, sharp stone, and the suffocating earth. Each dawn, as I watch the valley slowly illuminate, brings a battle against being drawn in. Yet, when I succeed in pushing back the darkness, when I turn my face to the warmth of the sun streaming through my window, my mind opens like the morning flower and I understand, with gratitude, that only as the self wears thin can the light enter it. 

One certainty looms like the night sky that stretches above my quiet valley: soon, I will no longer be able to share my thoughts, or even possess individual thoughts to share. So, the time to write is now, while my mind still dances like motes in a sunbeam.  With considerable practice,  I’ve developed some skill with typing with my eyes, but writing remains difficult – slow, draining, prone to error. 

Yet, here I am. Still writing. Still reflecting. Still bearing witness to this unraveling of self. 

This is where the story ends.

So far, I’ve told a story about how illness led me to the quiet stillness of this valley.

Now, I’m going to stop.

We humans weave our reality from stories like birds building nests – gathering threads of subject and object and weaving them around the frame of time. We shape moments into patterns, crafting tales of family, education, love, work, triumph, and loss. Layer by layer, we wrap ourselves in larger stories – community, nation, cosmos – from the Universe’s first light to Tuesday’s dinner.

Over a one hundred and fifty years ago, the philosophers Kant and Schopenhauer saw time not as a river flowing past, but as the lens through which we see our world. Not something to measure “out there”, but a component of thought itself. More recently, some of our best physicists would agree.

Like a snake’s view of the world as heat, or a bat’s reality of reflected sound, our species’ gift of time and story is as useful as it is incomplete. This thing that has helped us understand and dominate our environment also builds our prison. It traps us in stories of self and other, now and then, here and there. It makes us suffer loss. It blinds us to the true nature of things – the raw reality beyond our carefully constructed tales.

So, let us set aside narrative and come with me to the twilight borderland between living and dying, this lonely outpost where I’ve kept watch these long three years. I’ve done my best to explore this strange new territory through the meditations of my journal. Now, I want to transmit them back to you, hoping you find them useful someday. 

Here, the time is only marked by the wheel of the seasons, like sparse white-blazed treetrunks marking an overgrown forest trail. Here is the in-between place where stories end and something else begins.

Here is the frontier. 

Pause for a moment. 

Come sit with me, just you and I, and let’s whisper to each other in the wonderful stillness of the eternal now.

“Out beyond ideas of wrongdoing and rightdoing, there is a field. 

I’ll meet you there.

When the soul lies down in that grass, the world is too full to talk about. 

Ideas, language, even the phrase ‘each other’ doesn’t make any sense.”

– Jalal ad-Din Muhammad Rumi (1207-1273)