As my ALS progresses, I feel myself slipping away, unraveling thread by thread until all that remains is a fragile skeleton of who I once was. The disease is a slow eraser, wiping away the colors of my body, leaving behind a stark, hollow outline—a skeleton me.

Each day, I watch parts of myself fade into shadows. Muscles that once carried me with strength and grace now betray me, weakening until they are little more than memory. My hands, once capable and sure, now tremble and fail. My voice, once a clear expression of my thoughts and feelings, grows faint, a ghost of sound struggling to break free.

The darkness that creeps in is not just physical—it is a shadow that settles deep inside my mind. It whispers cruel truths and fears I cannot silence. It is the fear of disappearance, the terror of becoming invisible to the world and even to myself. I am losing more than movement; I am losing identity, presence, the very essence of being.

There are moments when the weight of this slow disappearance crushes me. I am haunted by dark thoughts—what will remain when the flesh is gone? When my body is no more than brittle bones held together by fading will? Will I still be me? Or will I become a hollow shell, a skeleton wandering through memories of a life slipping away?

The loneliness is profound. It is not just the isolation of the body failing but the isolation of a soul trapped inside a form that no longer responds. I am here, yet fading. Present, yet absent. A paradox of existence that tears at the fabric of my mind.

Anger rises like a storm—anger at a body that betrays, at a fate so cruel and relentless. But beneath the anger is grief, raw and unyielding. Grief for the loss of touch, of voice, of autonomy. Grief for the slow erasure of myself.

Yet, even as the darkness presses in, a stubborn spark remains. Beneath the thinning skin and weakening bones, my spirit fights to hold on. I am more than this skeleton, more than this fading frame. I am the sum of memories, thoughts, and feelings that no disease can steal.

Skeleton me—stripped bare, vulnerable, and raw. Facing the abyss with a heart that still beats fiercely. Though the world may see the fading body, inside burns a light that refuses to go out.

This journey is a descent into darkness, but it is also a testament to resilience. To the enduring strength of a soul refusing to be erased, even as the flesh disappears.

TJO