When Your Core Gives Way

Living with a progressive condition teaches you to recognise patterns, the shifts, changes, the way FSHD reshapes strength, posture, and movement. I have written about the years of falling, pain, feeling trapped in a body like this, the early arm weakness, the journey into mobility aids, the fear of using a chair too early, the misdiagnoses, the institutional barriers, and becoming a full time powerchair user. Despite all the years and the ever evolving health, my rare condition continues to surprise me as the FSHD world keeps progressing.

Stepping Into Disability Communities

I have spent most of my life disabled. Thirty years of muscle loss, pain, fatigue, and the slow shift of what my body can and can’t do. Thirty years of adapting, slowly deteriorating, and surviving. A life my children have grown up around. Yet I’m not part of any disability community outside the one we've built at church. Not properly.

I have changed that recently. My faith, knowledge, ministry, and life have grown. I am halfway through the ordination process. I’m shaping my calling and building a disability ministry. I have learnt more about disability theology, disability law, the Equality Act, SEN law, the difference between equality and equity, and the lived experience of disabled adults and children. I have been advocating for years, writing openly, and supporting others, but something shifted. I needed to go deeper and belong somewhere that understood my world.

A Pentecost Study: Fire

A Pentecost Study: Part 2 - Fire

“Divided tongues, as of fire, appeared among them and rested on each of them.” (Acts 2:3)

Fire is one of the most powerful images in Scripture. It is never merely decorative. It reveals, purifies, guides, judges, warms, and transforms. In the Old Testament, fire is often the sign of God’s holy presence. Moses meets God in a bush that burns but is not consumed (Exod. 3:2). Israel is led through the wilderness by a pillar of cloud by day and a pillar of fire by night (Exod. 13:21). When the covenant is made with Abraham, God passes between the pieces as a smoking firepot and blazing torch (Gen. 15:17). Fire marks God’s nearness—dangerous, beautiful, and alive.