I’ve been a full‑time wheelchair user for six years. Before that, I walked with a stick, stubbornly and painfully, until the ground became a threat rather than a surface. It was a difficult decision. I reached a point where I couldn't avoid it any longer. I’ve written about that journey before: the grief of slowly losing mobility, the reluctant acceptance of using a chair, the fall that forced me to swallow my pride, and the reality of living with FSHD. Those posts explore the physical decline, emotional adjustments, and journey of independence that looks different than I imagined. Many in my position are forced to make that change. It’s not easy, but at some point it’s needed.
I’ve adjusted well. My powerchair is freedom. I travel everywhere. I love the independence, going by trains, and not worrying about falling. My chair is my body; my stability, safety, and autonomy.
However, there’s a part of being a wheelchair user that I never expected, and it’s worn me down: the jokes, especially the ones that aren't funny.


