Acceptance doesn’t mean what I thought it would

By Marisa Spain

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I can trace FSHD back at least five generations in my family and have always known that it would be a part of my life. Both my father and I have early onset FSHD, meaning that our symptoms began very early in life. You would think that this familiarity with the diagnosis would make us naturally comfortable with talking about it. But alas, growing up my family treated FSHD like a shadow standing in the corner of the room, a custom I’m sure many readers can understand. It was always definitely there, but if we didn’t look it in the eye, we might be able to escape what it might have in store for us. If we just didn’t talk about it, maybe we could maintain a facade of “normality”.  

It was within this pursuit of normality that I formed my definition of “acceptance”. As I was losing mobility throughout my teenage years and into college, I adopted the personality of someone who just didn’t want to participate. It wouldn’t matter what I couldn’t do if I wasn’t the type of person who would want to do those things anyways. I had accepted that my life would just be one where I was meant to watch from the sides, stagnant and isolated, because my body could not keep up. I thought that to accept my FSHD was to simply endure it. 

I experienced hundreds of little losses, thousands of little griefs that had nowhere to go. I thought that being okay with the limitations that my FSHD put on me and moving past the anger and pain that my situation caused was what it meant to accept my circumstances and my FSHD.  

But I was wrong. 

After college, I reconnected with an old friend who had used a wheelchair all her life. She understood what it meant to live in a body that was constantly challenging you, and she showed me that there was a different way to “acceptance”. She taught me that I did not have to change myself to fit the world, but that I could change the world to fit me. I learned that true acceptance was finding ways to keep living and enjoying the things that I had long accepted I would just have to give up. I decided to discard my mindset, trade it in for hers, and became the thing that I had been taught to fear most: a wheelchair user. 

I had always believed that using a wheelchair would mean that I had given up. That I would have accepted defeat and that FSHD would have won. I didn’t realize that this mindset was holding me back. The decision to change my personal definition of acceptance and to purchase my first wheelchair is one of the best I’ve ever made. For the first time, I reclaimed things that I had lost. No longer did I say no to plans because of how far we would have to walk, or have to overthink resting areas along the way, or worry about being so slow that I would be left behind. My house even got cleaner because I was suddenly in a position where I didn’t need to ration my energy! My world exploded. I was no longer limited.  

It was this change in mindset that allowed me to develop a sense of Disability Pride. While FSHD has caused me grief, pain, and loss at a young age that most people do not experience until their senior years, I realized that it has also brought immense beauty into my life. Because of my disability, I am empathetic and creative. I can adapt to change like no other! I am surrounded by the most beautiful and supportive family and friends. I have met wonderful people I otherwise might never have known. I have a career that fuels me that I would not otherwise have had. In my grief and loss, has come purpose and drive.  

I am proud of the person I am and the life I have built, not despite my disability, but in large part because of it. 

Happy Pride, y’all. Stop changing yourself to fit the world and go get that wheelchair! <3