Living Beside FSHD: World FSHD Day Stories

By Kathy Chase

Read more of Kathy’s writing on her Substack.

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People think they understand FSHD when they hear the words “muscular dystrophy.” I thought I did too. I imagined weakness. Difficulty walking. Maybe a wheelchair someday. What I didn’t understand was that FSHD is really a thousand losses that happen one at a time. So slowly that sometimes you don’t notice them until they’re gone.

Larry and I have been married long enough so that I know his habits. I know how he laughs. I know the way he tells a story. I know the look he gets when he is trying not to let something bother him. I’ve also learned to recognize the look he gets when he realizes something has become harder. At first, it was little things. A staircase. A long walk. Getting up from the floor. The kinds of things most people don’t think about. Then it became bigger things. Travel. Hiking. Spontaneous plans. The future we thought retirement would be.

People often ask how Larry is doing. I understand why. He’s the one with FSHD. But what I’ve learned is that diseases don’t stay neatly contained inside one person. They spill into marriages. Families. Careers. Dreams. Schedules. Finances. And every corner of daily life. I don’t say that because I’m looking for sympathy. I say it because it’s true.

FSHD moved into our house years ago and never left. It sits at our dinner table. It rides in our car. It comes to family gatherings. It goes on vacation with us. Even when we wish it wouldn’t. One of our favorite activities is taking our dog to the dog park. When I tell people that, it sounds ordinary. The truth is it isn’t. Nothing is ordinary anymore. Larry walks slowly with his walker. About 100 yards. Maybe a little farther on a good day. Then he sits and watches the dogs. The dogs don’t care about his walker. They don’t care about braces. They don’t care that his muscles don’t work the way they once did. They just run up to him expecting a scratch behind the ears. For a little while,
everyone is exactly who they are supposed to be. Then we go home. We make breakfast. And Larry often goes to bed for several hours.

That’s the part people don’t see. The cost. The recovery. The exhaustion comes from accomplishing what others would consider a simple outing. The world sees a trip to the dog park. I see determination. I see effort. I see courage. I see someone refusing to stop living.

One of the hardest things about FSHD is the uncertainty. There is no finish line. No surgery that restores what was lost. No treatment that can stop the disease in its tracks. At least not yet. The FSHD community lives in a place of hope and waiting. Researchers are working. Clinical trials are happening. People are dedicating their careers to finding answers. But for families living with FSHD today, the reality is that there is still no cure and no treatment that can reverse what has already been lost.

When someone is diagnosed with cancer, there are often treatment options. There may be surgery, chemotherapy, radiation, immunotherapy, or clinical trials. There is a plan. There are weapons to use in the fight.

The FSHD community is still waiting for those weapons. Instead, people with FSHD fight a quieter battle. A battle that most people never see. They fight to stay mobile. They fight to stay independent. They fight fatigue. They fight falls. They fight the frustration of watching their bodies change while their minds remain the same.

And their families fight alongside them. Not against the disease itself, because today there is no way to defeat it. But against isolation. Against discouragement. Against giving up pieces of life that still bring joy. It is a silent fight. One that takes place in living rooms, doctor offices, parking lots, dog parks, and shower stalls. A fight measured not in victories over disease, but in determination. A determination to keep living while waiting for science to catch up. And I believe that day will come.

I hope it comes for Larry. I hope it comes for every family walking this road. But until then, we keep adapting. We keep showing up. We keep finding joy where we can. Because life is happening now. Not someday when a cure arrives. Joy and grief are not opposite. They live side by side. That may be the greatest lesson FSHD has taught me.

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World FSHD Day is celebrated every year on June 20th to raise awareness for facioscapulohumeral muscular dystrophy and unite our community. This year we are honoring the day by sharing the stories of those living with FSHD. 🧡

To hear more stories and perspectives, log into social media and search these hashtags and, if you feel inspired, share your story too.

#WorldFSHDDay #VoicesofFSHD #FacesofFSHD #FSHD #FSHDAwareness