Muscular Dystrophy

Muscular dystrophy is not an ordinary symptom — it is a profound experience that accompanies a person and their family over years, often for a lifetime. The muscle that is meant to carry movement into life gradually loses its form, its tension, its strength. What was once taken for granted — standing up, walking, grasping, holding — becomes, over time, a quiet effort. And then something that must be left to others.

Those who live with muscular dystrophy know a particular kind of loneliness. The strength is still there inwardly — the will, the longing, the aliveness. But the body no longer carries it out. Between what one still wants to be and what the body can still do, a space opens. Sometimes a narrow gap. Sometimes a chasm. And in this space much resides: grief, anger, fatigue, shame, dignity, hope.