The Battle Against ALS

I don’t fear death as much as I fear not living the life I have been given. Every day is a relentless struggle to hold death at bay, through sheer determination and yes, with a good dose of respect for the reaper himself. He has bestowed upon me this burden called ALS, the cruel thief that slowly robs me of my vitality.

In the light of day, I laugh at my condition, projecting an image of bravado and resilience. Strangers see a person who defies the odds, who refuses to let a diagnosis dictate the terms of their existence. Yet, the reality of my struggle is far more complex. In the shadows of night, away from the judging eyes, I cry alone in the dark, mourning the loss of my former self. This is the curse of living with death as your bedfellow.

Two juxtaposed lives unfold within me. One is vibrant, a testament to the undying spirit that fights against the tide of decay. The other is the husk that this spirit resides in, a body betrayed by its own biology. Decay encapsulates the beauty and strength that lay in wait for death’s final claim. Each day is a paradox; the more I live, the more I am reminded of the impending end.

ALS has a way of stripping away the layers of life, revealing the raw and unfiltered emotions that most people, in their hustle and bustle, never get to confront. There are moments when the weight of the condition feels like a heavy shroud, suffocating and inescapable. Yet, there are also fleeting instances of profound clarity and gratitude, where the simple act of breathing feels like a victory in itself.

This existence, though fraught with pain and sorrow, is punctuated by brief moments of triumph. A smile shared with a loved one, a sunset watched from the confines of my chair, a memory that defies the erosion of time—these are the fragments of life that make the struggle worthwhile. Even as the body decays, the spirit finds ways to soar, transcending the limitations imposed by ALS.

In public, I wear a mask of nonchalance, laughing in the face of adversity. But in private, I am acutely aware of the fragility of my being. It is in the solitude that the tears flow freely, a cathartic release for the pent-up emotions. This duality is the essence of living with ALS—the coexistence of hope and despair, strength and weakness, life and death.

I have come to understand that fear of death is not the enemy. The true adversary is the fear of not fully embracing the life that remains. Each day is a battleground where I fight to preserve my humanity; to carve out moments of joy amidst the suffering. It is this determination, this fierce will to live, that keeps the reaper at bay.

In the end, living with ALS is a testament to the resilience of the human spirit. It is a reminder that even in the face of inevitable decline, there is beauty to be found in the struggle. The juxtaposed lives within me continue to dance their intricate dance, each step a silent declaration of defiance. And so, as I hold death at bay, I also hold onto the fleeting moments of life, cherishing each breath, each heartbeat, as a triumph over the darkness.

TJO