How a Life-Changing Illness Forced Me to Rethink Everything
The world is full of twists and turns, some anticipated, others landing with the unannounced force of a hurricane. I’ve navigated life’s detours from the seat of a wheelchair since birth, carving out an existence that, until recently, brimmed with independence and adventure. With my wonderful wife by my side we travelled the world, relying on our own resourcefulness rather than personal care. My wheels were my wings, and I soared.
But in 2020, as the world stood transfixed by the pandemic’s relentless march, I faced a threat not from Covid itself, but from the shadow it cast on ordinary medical events: uro-sepsis. The experience left me fundamentally changed—physically, mentally, and emotionally. Now, at 49, I find myself transitioning from the fiercely autonomous person who needed no help, to someone confined to an electric chair, reliant on a local care company for support four times a day—even though their clientele is predominantly people decades older than myself.
Understanding Uro-Sepsis: A Silent Threat
Before I can truly describe my journey, it’s important to understand what uro-sepsis is and how devastating its effects can be. Uro-sepsis is a life-threatening complication arising from a urinary tract infection (UTI) that spreads into the bloodstream, triggering a whole-body inflammatory response. It can escalate with frightening speed, overwhelming the body’s defences and causing organ failure, delirium, and, in many cases, death.
Many people think of UTIs as uncomfortable, inconvenient, but ultimately manageable. For wheelchair users like me—especially those with underlying health conditions or compromised immune systems—the risk is exponentially higher. Kidney stones, which are more common in people with limited mobility, can serve as the perfect storm: a blockage leading to infection, and infection spiralling into sepsis.
The Day Everything Changed
I still remember the swirl of confusion that marked the start of my ordeal. It was 2020, and strict Covid restrictions meant hospitals were fortresses—no visitors, no comforting presence of my wife Stacey. I was rushed in with crippling pain from kidney stones, but nothing prepared me for the onslaught of uro-sepsis.
My memory of those days is jagged, punctuated by fevered hallucinations and moments where reality bent and fractured. At the height of my illness, I felt as if my mind was swimming through parallel universes, each with its own warped version of the world. The fever brought on delusional thoughts, warping the line between what was real and what was not. I can recall one night, in the depths of a “septic storm,” when scores of clinicians burst into my room. Some came to inject me with this or that, others hovered over monitors, urgently checking my stats. In and out of consciousness, I lost all sense of time—convinced I’d been unconscious for a day, only to discover it had been an hour.
That haze of confusion was matched only by an intense isolation. I had never felt so alone. The hospital, once a place of healing, became a crucible—a test of physical endurance and mental resilience. No visitors meant no anchor to the outside world. My only companions were the parade of masked nurses and doctors, whose faces I barely recognised through the blur of fever and delirium.
It was only when the junior doctors and nurses, the same ones who’d rushed to my bedside the day before—fighting for my life—returned on their next shift just to check that I was still alive, that the seriousness of my condition truly hit home. Their concern was genuine, their relief palpable. I had survived—barely.
The Aftermath: From Independence to Dependency
Emerging from sepsis is like waking up on the other side of the world, everything familiar yet subtly, cruelly changed. I had always prided myself on my independence. As someone who had used a wheelchair all my life, I’d adapted, innovated, and thrived—travelling, working, living on my own terms.
Post-sepsis, everything was different. The infection left my body battered and my spirit bruised. I could no longer manage the day-to-day tasks I’d once performed effortlessly. The transition from manual to electric wheelchair felt symbolic—a loss of autonomy, a physical manifestation of my new limitations.
Worse still was the necessity of daily personal care, provided not by family or friends, but by a local care company more accustomed to supporting people in their 70s and 80s. I was only 49. The sense of displacement was profound. Each visit, four times a day, was a reminder of how much I had lost and how different my life had become.
The Psychological Toll of Uro-Sepsis
The physical ravages of uro-sepsis are devastating, but the psychological scars run just as deep. The loss of independence is a grief unlike any other. For weeks, months, I grappled with feelings of anger, sadness, and even shame—shame that I needed help, shame that I could no longer be the person I once was.
Isolation exacerbates these emotions. During my illness, the absence of visitors meant there was no one to hear my fears, no one to offer reassurance. The fever-induced delirium left me questioning my sanity even after I’d recovered. Memories of hallucinations would surface at odd moments, vivid and disorienting. I struggled with anxiety, afraid that any ache or twinge might signal another spiral into sepsis.
Since 2020, I have been admitted to the hospital four times with urosepsis. Each admission has been a challenging ordeal, both physically and emotionally. However, through every difficult moment, my rock has been my wife, Stacey. Her patience, understanding, and unequivocal love have been my anchor.
As my body grows weaker with each admission, the physical toll becomes harder to bear. Yet, Stacey’s presence makes it easier psychologically and emotionally. She is always there, holding my hand, ensuring I eat and drink, and providing the comfort and strength I need to keep going.
Our relationship has also faced its share of struggles due to my illness. I am no longer the man she married, and the impact of sepsis has changed many aspects of our lives. Despite these challenges, Stacey never gives up or gives in. Her unwavering support and love have been the foundation that keeps us strong. She is my rock, and I am forever grateful for her.
Reflections on Acceptance
Adapting to this new reality hasn’t been easy. There are days when I mourn my old life—the freedom to travel, to act spontaneously, to live without the structure imposed by care schedules. Yet, slowly, I am learning to find meaning in the present, to accept help when it’s needed, and to celebrate small victories.
My journey is not unique. Many people who survive sepsis, regardless of age or prior health, face a steep path of rehabilitation and adaptation. For those of us who already navigated life with a disability, the road can feel doubly hard, the losses compounded.
But there is hope. I have learned to advocate for myself with care providers, to push for dignity and respect, and to share my story—because too often, the consequences of conditions like uro-sepsis are misunderstood or underestimated.
Lessons Learned and Looking Ahead
If there’s one thing I want others to take from my story, it’s this: never underestimate the seriousness of urinary tract infections, especially in those with mobility challenges. Uro-sepsis can strike with brutal speed and leave lasting scars. Awareness saves lives. Don’t ignore symptoms. Seek help early.
And to anyone facing similar changes—whether from illness, accident, or simply the unrelenting passage of time—know that you are not alone. While the journey from independence to acceptance is painful, it can also be transformative. I am still here, still living, still fighting for the best quality of life possible.
This is not the ending I would have chosen. But it is, nonetheless, a beginning. I hope my story sheds light on the shadows cast by uro-sepsis and offers comfort to anyone struggling to adapt to a new way of being. There is life, and even joy, on the other side of survival.
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