More Laughter, More Love: Reflections on an inter-abled relationship

Loving someone with FSHD means learning to live in constant motion. Everything is always shifting. Emotionally, physically, and mentally. Joe is incredibly intelligent, thoughtful, and full of a deep, love for life. That part of him never fades. But the way life moves around him and within him means we get used to one version of “normal,” and then something else changes. Something else slips away.

It’s scariest to watch him fall. As his wife, it’s a unique kind of heartbreak. There’s a helplessness in seeing someone you love more than anything wrestle with a body that no longer listens to him. And there’s a pain that comes from knowing he’d rather struggle through it alone than ask for help.

I watch him fight every day. Not just the disease, but the frustration, the anger, the mourning of small freedoms lost. And I do my best to be strong beside him. But some days, navigating his emotions feels like walking through a storm I can’t control. He tries to protect me from how hard it is for him, and in return, I carry the quiet ache of watching him carry too much.

There is so much love here. There is also grief. And sometimes, those two things sit side by side, tangled in the same breath. I miss the ease we used to have. I miss not being afraid of what’s next. But I’m still here. Forever loving him, holding space for him in whatever aspect is needed, honoring the man he is, even as the disease tries to pull pieces of him away.

We may never get to stay in one moment, but I hold onto each moment anyway, fiercely and gently. because loving him within his shifting landscape is still the greatest gift of my life.

Sending love to everyone suffering with FSHD Muscular Dystrophy, and those that love them.