I have had the pleasure of meeting the most interesting people who also share their stories. Like any equity group, no one opinion represents the group.
In one discussion, a visually impaired man told me how those who are blind and use a white came or guide dog follow routes from memory. So when something moves, like detours during construction or menu board on a sidewalk, it completely disorients them.
Makes sense. If you're going by memory, counting steps or guiding by surface. The things non-blind people wouldn't consider.
It's similar for people with FSHD as we progress in our disease. Although I think it makes less sense to non-FSHers because an inch literally can make the difference between completing a task or not.
There's an assymetry to the disease so muscles weaken in different places at different times at different extremes. It often feels like walking on marbles or on a tight rope. One inch one way or another and that muscle group collapses.
It's the same with furniture, clothes, dishes and everything else in daily life.
I know some who use masking tape to mark off where everything needs to be, how wheels on a wheelchair needs to line up. Her whole house is marked up with lines.
It adds a whole other level of constraint. Not only for the person needing everything to be just so. But, for the people around them.
I know it's hard when you are caring for someone with FSHD. Their inner strength, resilience and problem solving don't align to what might look like OCD or just being too demanding.
I hope you, as someone who is around someone with FSHD, will fire up your empathy and patience.
Trust that the Law of Inches is about independence and freedom.
