Chronically Uncertain: Living Without a Safety Net

“Did you know you were going to get better?”

His question reverberates through the phone line. Recounting what feels like a century during which I was bedbound conjures a spectrum of emotions. Tempering my words with gentle truth, I tell him that I didn’t. I explain that over a lifetime with a disability, including the last decade of debilitating and at times life-threatening health challenges, I’ve learned one lesson on a visceral level: Few things in this life are guaranteed.

The moment my eyes flutter open each morning, I am greeted by panic. My improvements in health and capabilities over the past six months do little to stanch my instinctual proclivity toward fear. Though I dedicate the entirety of my limited energy to my survival, healing, and reclamation of life, I can’t depend on crumbs of recovery to nourish my longevity.

Before my feet have even grazed the carpet, my mind has projected several terrifying circumstances that could put my existence in jeopardy. The reality of my experiences has provided me with questionable outcomes. Can I eat today? Will the pain last forever? When will I be able to sleep again? How will these daily survival challenges affect my ability to persevere?

The answers to my questions are unknown. I marvel at the kind of existence characterized by predictability and reassured projections into the future that people gifted with vibrant health often have. I wonder about the level of confidence that allows them to count on their own bodies. I’ve never come close to any reassurances about my residence in this life. Even the persistence of my pulse continues to surprise me.

Navigating each day with little or no knowledge about how my next meal, movement, or exposure to environmental toxins will affect me makes for a trepidatious trajectory. As much as I attempt to free myself from a sense of guilt or shame when all of the above compromise my precarious existence, I still blame myself. If only I had chosen to stay home, eaten less or more, or conserved my breath instead of calling a friend. This unrelenting self-punishment is merely a game of control that I play with myself.

My attempts to convince my conscious brain that I can create more stability by virtue of my decisions inevitably fail. I might successfully persuade myself that I have some control, but the delusion is fleeting. Vulnerability on a primordial level is something that few of my peers think about every day. Susceptibility to the world around me, to chemicals and foods, to the air and pathogens has hardwired my central nervous system for disaster.

While my peers might be planning their next vacation or remodeling their homes, I’m wondering how many more weeks I can stay out of the emergency room. I’m contemplating potentially hazardous contamination, and continually trying to mitigate disaster. I’m thinking about the decisions I make today and how they will affect my ability to write my column next week.

No one has guarantees. However, navigating a dangerous world with chronic illness and limited reserves intensifies a lack of security. I dream about a kind of life in which I feel rooted, anchored to nourishment. I paint the wind with intentions for stability and safety.

I remain committed to my treatment protocols with the expectation of complete revival and rejuvenation. I believe in myself. And yet, despite my best intentions and efforts to create a world that supports me, I don’t know if and when it will materialize. I don’t know anything for sure.

“Years!” My friend’s voice exclaims in disbelief. “You spent years in bed, not knowing if you would ever be able to get out?” I respond that it’s true. “Wow. But you did.”

But I did. I do.

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