A Few Words on Uncertainty
Many conversations have been had within the community about living with a disease that has a pretty darn good way of making its own edits to our best-laid plans. This is what I've been thinking about the matter lately.
As a child I fell, and my scraped knee wept drops of blood. The wound was cleaned and covered; the scab itched, then disappeared, dissolving into life’s folds.
My disease, by contrast, is insidious by design, affecting me so profoundly, yet so furtively. I feel its weight, I bear private witness to its effects, but I never can see it, never touch the part that hurts. My doctor views it fleetingly with a tiny light on a black snake scope as I sleep in chemical twilight, evidenced by grainy pictures I examine through the haze of Versed. It gives me notions of its character through hours spent in forced communion, but we never meet face to face.
What’s more, it is a wound open in perpetuity. Each encounter I have with the disease, each episode I experience, is not without its sequel, timed seemingly at random. When I am well, disease is a subconscious malaise. When I am ill, it is tragically familiar.
What’s more, pathology does not amend human nature. As a species of planners, uncertainty is Human’s eternal foe. The patient experience, therefore, inevitably involves an unfulfilled need for stability. Humans crave a period, but the disease offers me only, at best, an ellipsis.
What, then, am I to do? You may tell me that my best-laid plans are wishes at best, that only my pathology is certain, and I would agree. You may request I recollect any minute I spent alone on the bathroom floor or in a hospital, shame and anger amplified by the thought that I would be somewhere better if I were but unafflicted, and I could easily recall it. I could linger on the times in which life dangled before me before being denied. I could think of the pleasures I have not felt.
Ah, but consider those which I have.
I remember my depths, but, more vividly, my heights. The times of health, of freedom, have afforded me the most profound gratitude I've ever known for a state I might otherwise take entirely for granted. People I touched, places I’ve seen, gasps of delight are treasured and preserved like trophies on a shelf, and, regardless of whether they come to fruition, my intent is to seek out more. I remember Icarus not because fell from the heavens, but because he reached them. I dream, not in denial but in defiance, of my pathology. My disease lurks in shadows, but the life it touches is lived in full color.