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.

Jessica B.
Nashville, TN
Monday, Jun 24, 2013