Despite self-image issues, I’m trying to treat my FSHD body as a friend

During a recent facioscapulohumeral muscular dystrophy (FSHD) wellness group meeting via Zoom, a friend of mine shared a poem by May Sarton that prompted the question: “Do I think of my body as an old friend or as an enemy?” I realized that my attitude toward my body has grown worse with recent difficulties. I need to change my self-image.

I’m in a season of increasing disability, with lots of doctor appointments, X-rays, MRIs, and blood work as my providers try to find answers to why I’ve fallen apart over the past few months.

I haven’t been able to actually see what I look like since June 11, 1989, when I lost my sight in a head-on collision with a drunk driver, but I imagine that I’m a pitiful sight. My neck can no longer hold my head up. Most of the time, I’m looking down. My right arm is withered and pretty useless. I drool.

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Most of us with visible disabilities have received hurtful stares and inappropriate comments at some point. I have a vivid memory of walking to the local post office to get our mail when my daughter Jill was 5 or 6 years old. As we walked, Jill asked, “Daddy, why are people staring at us?” I explained that they weren’t staring at us, but at me, as I looked different from other people. With just a glance, the people in my community forced me to explain to my daughter that I wasn’t part of the “normal” world. My self-image was bruised, but not broken.

Over the years, I’ve tried hard to think of my body in a positive light, but I haven’t always been successful. As I continue to lose strength and mobility, it’s been a struggle to think of my body as an old friend, rather than as an enemy that’s letting me down and making my life increasingly difficult.

Talking with others in the FSHD community has helped me keep these losses in perspective and allowed me to be more grateful to my body for overcoming many obstacles. Its stamina has allowed me to raise a family, have a career, and bring people the joy of music. I’ve lived a very full life.

Learning to give myself some grace

Recently, Michael King, who co-leads the FSHD Society’s “Living Spiritually with FSHD” monthly Zoom meetings, shared two resources that I’d like to pass on to my readers.

Actor Jordan Walker Ross plays Little James in the TV series “The Chosen,” which is based on the life of Jesus and his first Twelve Apostles. Little James has a physical disability and walks with a severe limp, as does Ross, who lives with cerebral palsy. In one scene, James asks Jesus why he has the power to heal people but hasn’t been healed himself.

Jesus responds, “If I don’t heal you, to know how to proclaim that you still praise God in spite of this; to know how to focus on all that matters so much more than the body; to show people that you can be patient with your suffering here on earth because you know you’ll spend eternity with no suffering — not everyone can understand that.”

This scene wasn’t taken directly from the Bible, but I think the writers did a great job of creating a dialogue that Jesus and James might have actually had. As a Christian, I felt comforted and healed.

Ross also hosts a podcast called “What’s Your Limp?” in which he interviews celebrities and other popular figures who limp or have a physical disability. Through the podcast, Ross affirms that disabled listeners are not alone in their struggle. He and his guests also offer helpful tools and coping strategies.

I’ve listened to a few episodes, but the one I appreciated most was “Learning to Love and Accept Our Bodies,” featuring actress Jamie-Lynn Sigler. Sigler shares her story of dealing with an eating disorder during her time on “The Sopranos,” then struggling to hide her symptoms after being diagnosed with multiple sclerosis.

Both Sigler and Ross talked about losing roles because of their disabilities. They also discussed finding roles that let them bring who they were into the parts they played, rather than hiding behind a mask of physical perfection.

Physically, things are going haywire for me at the moment, but I’m going to give my body some grace and treat it like the old friend it’s always been. I’m going to listen when it tells me it’s time to sit down. Even when it tells me that it can no longer do a task, I’ll thank it for the 68 years of service and friendship. Together, we’ll find another way to get things done.

As he did with Little James, I believe God can use me and my broken but beautiful body to do some good in this world. I want to leave it better than I found it.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.