Twilight Journal

ALS (MND) is a terminal disease for which there are no effective treatments. Within a few years, it gradually suffocates and kills its victims, first fully paralyzing them while leaving all sensation and cognition untouched.

This illness stills my legs and quiets my hands, placing me like a stone in this lingering space between darkness and dawn. Yet, this rare and terrible gift has opened me to what many rush past unnoticed in their time. As my body fades, my vision has grown bright.

This journal 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 I select, revise, and improve entries from a journal kept in 2024, I’m sharing them here. So, the order in which posts arrive may differ from the season in which you are reading them.

Summer Journal: Beyond the Edge of Sight

Frogs call from the stream. Bats pour from the chimney. Insects rise like smoke. This reflection is about the limits of perception — how frogs see color we cannot, bats hear shape we’ll never know, and countless worlds unfold around us, just beyond our senses. How many universes brush past us each night, unnoticed but fully alive?

Summer Journal: Bugs

The bugs are back. Bees lumber. Gnats buzz. Ants march. Moths drift. This reflection is about the miniature symphony unfolding all around us— and what it means to be a tiny, brief part of something infinitely larger. Even with gnats in your ear.

Summer Journal: Softness

This morning arrived wrapped in the rare softness that only exists between seasons. Not quite spring. Not yet summer. Just this: Fox kits in the bamboo. Violets in the grass. Air like a rose petal against your cheek. This reflection is about new life, quiet light, and the gentle power of a world waking up.

Summer Journal: Breeze

Mist spills from the stream, then rises—slowly, suddenly— a column of fog where shadow meets sun. This reflection is about warmth, lift, and letting go. A hawk will rise on this same breath of air, and fly for miles.

Spring Journal: Milkweed

One spring morning, my son and I planted milkweed. We talked about soil. And butterflies. And the illusion of separateness. He’s thirteen—his mind busy with bikes and girls and dreams of his first truck. He may not remember the words. But maybe he’ll remember the light. The dirt beneath our hands. The feel of being together. This piece is about parenting, impermanence, and planting truths that may only bloom when the time is right.

Spring Journal: Treetops

Spring has returned with a shout— green bursting from every branch, every stone, every breath. This reflection is about a single dogwood blossom high in the canopy… and how, from the angle of a wheelchair, it became visible—separate, and yet never apart. Everything flows. Everything belongs. Even what stands out for a moment.