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ALS doesn’t come with mercy. It strips away slowly—movement, voice, breath—until only the mind remains, fully aware inside a vanishing body. And yet… in this long twilight, a strange gift appears: clarity. Presence. The raw, radiant truth of what it means to be alive while dying. This is a message from the edge— Not just to remember death, but to remember life.
It began with a twitch. And ended with everything unraveling. This is a story about ambition, marriage, betrayal, diagnosis, and the quiet devastation of ALS. But it’s also about the choices we make when time runs out… and what remains when everything else falls away. If you’ve ever faced a truth too heavy to hold, or a life cracking open too soon—this is for you.
After so much chasing, I finally found stillness. This cottage in a steep green valley—with its stone walls, wide windows, and birdsong—has become my last sanctuary. A place to watch, to listen, and to begin saying goodbye. This reflection is about home. Not as escape, but as embrace. A final classroom. A final breath of grace.
In the first year after my diagnosis, I planted lavender, towed a teardrop trailer across the East Coast with my son, built a billion-dollar company, and studied the soul’s terrain from my kitchen table. I knew the clock was ticking. So I chose to live—deeply, honestly, and all the way through. This reflection is about fatherhood, fortitude, and finding wonder even in the narrowing.
One winter morning, I fell on the ice—and couldn’t get up. That moment marked the end of something… and the beginning of something else. This piece is about losing the last pieces of independence, the arrival of a tattooed caregiver named Mark, and a children’s book I wrote for grandchildren I’ll never meet. It’s about legacy. Lightness. And the slow, sacred weight of a feather.
This winter marks my third in the valley—and my third inside a body growing still. What began as a stumble has become a quiet unraveling. And yet, while my strength fades, something else opens: presence, clarity, light. This is not just a story of loss. It’s the end of story itself. Come sit with me in the stillness—where words fall away and something deeper remains.
The valley teaches in light. Each season arrives with its own voice—spring’s honey-gold promise, summer’s restless shimmer, autumn’s amber hush, winter’s quiet charcoal. From my stillness, I see it all more clearly now. Every leaf. Every shadow. Every tender change. This reflection is about watching the year turn from a wheelchair—and realizing light is always writing love letters across the walls.
Winter comes quietly, piece by piece. Leaves retreat. Soil opens. Robins dig while they still can. The forest stands bare but not empty—just returned to its bones. This reflection is about watching the season strip things down to their essence. About change, movement, and the stillness that holds it all.
The world exhales. Frost crystals bloom in silence. Light scatters like jewels. The stream rushes toward something vast and unseen. This piece is a meditation on water—its wild, ungraspable wisdom. Always moving. Always changing. Always itself.
Each morning, I light a fire. Kindling catches. Coals glow. The same warmth that flickers on my kitchen walls once touched the faces of those who came long before me. This reflection is about the ancient comfort of flame— how, in the heart of winter, we conjure summer with twig and spark.
Tonight, I told my son the truth. About the disease. About what’s coming. About what it means to love someone through a slow goodbye. This piece is about that conversation—tender, necessary, unthinkably hard. And about how even the darkest truths can be met with grace, and a 12-year-old’s steady hand.
The stream is no longer gentle. Tonight, it rages—muddy and violent, spilling over everything in its path. This piece recalls another storm… and the unimaginable loss it carried away. But even in grief, the rhythm remains: horror and beauty, compassion and mystery, life and loss spinning in the same current.
Last night was the longest of the year. And for a while, it felt like it might never end. Pain. Panic. The slow ache of a body forgetting how to be a body. But in the stillness before dawn, something shifted. Not the pain—but my relationship to it. This piece is about learning to hold suffering like a crying child. Gently. With attention. Without fear.
Each morning, the deer return. I watch them through my window—daughters grooming mothers, fawns testing new legs. For years, I thought I knew them. I even named one. But lately, I’ve begun to see more clearly. This piece is about how nothing truly disappears. Not the deer. Not the stream. Not even us. Everything returns. Everything flows.
The first snow arrived while we slept. By morning, the valley was a world reborn—branches blooming in white, silence stretching deep and wide. This piece is about that brief wonder before the plows arrive. About grilled cheese, wheelchair tracks, and the joy of walking beside my son across a canvas still untouched.
Snow remembers everything— every pawprint, every passing, every path. But like memory, it doesn’t hold forever. Edges blur. Shapes shift. A fox becomes a wolf. A story becomes something else. This piece is about tracks in the snow, and the fragile, fading, often inaccurate stories we call self.
Today, I left the screens and wires behind. I rolled across frozen ground and placed my hand on the bark of an old beech tree. This reflection is about the truth beyond thought— about how our minds draw tidy lines, and how the world quietly ignores them. What remains is this: bark beneath fingers. Sky above. Earth below. This moment. Nothing more. Nothing less.
Winter has softened. The snow is gone, and the forest wears its waiting palette—mud and bark, dry weeds and deer-trimmed clover. But just before sunset, something stirs: light through branches, a golden flicker, a memory of summer blooming in bare thickets. This piece is about that moment—brief as a birdcall, perfect in its passing.
The deer come at dusk, ribs showing, coats dull. The hunger moon rises. The carrion birds gather. This is a meditation on the sharp edge of late winter— where bare branches, bones, and longing all speak the same truth: Don’t look away. Even now, there is beauty. Even now, everything belongs.
Some days, the weight is unbearable. Darkness pins me down—thoughts too heavy, breath too short, everything too much. But then I remember something from a former life: space, frame, leverage. This reflection is about using what I learned on the mat to wrestle with despair— and how small wonders, named fears, and the present moment help me rise again.