My blogging has been patchy. Between 2014–2019, I was at the top of my game, writing most days. Then 2019 brought drama, Covid hit in 2020, Dad died in 2022, I started studying theology in 2023, and Hannah and I married in 2024. Additionally, as the boys got older, writing about them became complicated. Blogging changed. I changed.
Five years and 32 posts later (roughly six a year), I'm writing again. It feels good. However, I realised I haven’t written an FSHD update in years.
“The Lord, the Lord, a God merciful and gracious, slow to anger, and abounding in steadfast love and faithfulness.” (Exodus 34:6)
“But God, being rich in mercy, because of the great love with which He loved us…” (Ephesians 2:4)
The Hebrew word Ḥesed is often translated as mercy — a word with no single English comparison. Hesed means mercy, steadfast love, covenant, loyalty, faithful kindness, and unbreakable commitment. God chooses it when He reveals His character to Moses: “abounding in ḥesed” (Exo. 34:6). This is not sentimental softness; it is the fierce love that refuses to let go. Hesed is the reason God keeps returning to His people, even when they wander (Deut. 7:9; Ps. 103:8). It is the refrain of Israel’s worship: “His ḥesed endures forever” (Ps. 136).
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.
