Understanding Disability and Its Unpredictability

At 39, I was thriving, actively engaging in fitness routines, including running and weight training. My diet was healthy, rich in beans, pulses, and fresh vegetables, completely free from processed foods. Reflecting on my younger years in my late 20s and early 30s, my lifestyle was far less commendable.

So, why did this happen to me? Why at that particular time? Disability and illness are impartial; they don't play favorites. Although certain choices can mitigate risks, if fate decides to intervene, it will.

This isn't a tale of sorrow. I enjoyed 39 years of relatively healthy living, untouched by the discrimination and animosity faced by many. While I wasn't affluent, I certainly didn't live in dire poverty.

However, it struck me yesterday that my disability has robbed me of the opportunity to age gracefully and at a natural pace. At 43, I feel both physically and mentally older than my father, who is 73.

While aging typically unfolds gradually, often diminishing one's abilities over time, it generally leaves individuals only temporarily disabled before passing. My journey, however, has been markedly different. The limitations imposed by my disability and societal views struck when I should have been most vibrant, leaving me with some regrets about experiences I wish I had embraced before becoming disabled.

I wouldn't wish to change my disability journey at 39. I've encountered remarkable individuals within the disabled community, which has significantly contributed to my personal growth. If I could alter anything, it would be my life choices prior to this point—I would have engaged more fully during those 39 years and advocated more effectively for all marginalized groups.

While I claim that disability has deprived me of a graceful aging process, I am reminded of friends who never reached an age where they could even be considered "old." They left this world too soon, with so much potential unfulfilled. When I reflect on this, I recognize how fortunate I truly am.

During a recent visit to Manchester with my father and his partner, it dawned on me that as an electric wheelchair user, I have not just lost the ability to walk but also the gradual slowing of my pace that comes with aging. It isn’t just about moving slower; it’s also about the enforced pauses that aging naturally imposes—moments that allow one to observe and appreciate the world.

My father even crafted a piece of furniture for me—something simple, yet my disabilities prevent me from undertaking such tasks. I have a friend who assists with these projects as well. The reality is that my strength is waning, dimming like a lightbulb far too early.

The most challenging aspect, however, is fatigue. I often find myself working during the week only to spend my days off resting to recuperate. The old adage, "You should work to live, not live to work," resonates deeply with me, especially considering how much of my waking hours are consumed by work.

Healthcare professionals often assume that my disability precludes me from working. This thought crosses my mind frequently, making me contemplate leaving my job or my role in the non-profit sector. Yet, I realize I cannot afford to live without my job, and I also find purpose in contributing to the community through my non-profit work.

So here I am, aging and slowing down much earlier than I should. My body feels decades older, with my mind not far behind. But like countless others, I persevere. It’s not an easy journey—far from it. But I understand that if I stop, it will be challenging to regain my momentum.

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