Yesterday was my one year wedding anniversary. And along with the expected celebration and love and reflections on a year together, our anniverary brought some unique introspection.
My husband has a genetic disease called fascioscapularhumeral muscular dystrophy. The crib notes version: his face, shoulder, abdominal, and some leg muscles are wasting away. There is no cure, no therapy, no way to halt or slow or change the destruction. The progression is different for everyone, does not proceed at a measured pace, and can accelerate at any time. He may stay as he is for years. He may suddenly lose his ability to grip objects, his ability to lift his arms, his capacity to walk up stairs. He has difficulty lifting his right arm above shoulder height. His diminished hamstrings make it difficult for him to lift his foot behind him, meaning stairs and hills can be challenges. He sleeps with his eyes open. His shoulder blades jut out at odd and unnatural looking angles. He stands with an obviously curved spine.
Living with and loving someone with a progressive disease is a strange experience. Even with the visual reminders of his physical state, it is surprisingly easy to selectively ignore it. It is possible to go long periods of time without the reality of the disease entering into my mind. And then. My eye catches him standing a certain way. I wake up in the middle of the night and see him with his eyes open, staring but not seeing. He catches his toes on a stair. Often this is a minor hitch in my chest, a small jolt of recognition. Sometimes the hit is so hard, so sharp, so bitter, I have to hide myself from him so he doesn't see the pain I feel for him.
Is it shallow that I often find myself worrying about the perceptions of other people? I worry that they are looking at me, wondering what I'm doing. Do other people married to someone who is disabled or impaired feel this way? It seems impossible not to.