30 Days of MD: Transitioning From Invisible to Visible Disability

Photo courtesy of Andy Rusch

Day 17 of 30

This is Andy Rusch’s (@wildernessandwolf) story:

As someone with Becker muscular dystrophy, I have difficulty with stairs, inclines, and falling. I now have much more difficulty than I used to have. As I’ve grown older, I’ve been transitioning from being somewhat invisible to visible, and my issues can no longer be shrouded in the shadows. And to be honest, I’m okay with it.

When you deal with an “invisible disability” that slowly becomes more visible, it can be extremely embarrassing and downright demoralizing to have to ask for help. But when you find yourself on the ground after an unplanned appointment with it, asking for help is your only choice. On a recent trip with friends, I was put into this uncomfortable position.

Once I accepted my transition from a hidden disease to one that could no longer be concealed easily, I opened up about what I could handle and what actions I couldn’t do simply because I would become too fatigued. Instead of running from the fear, I leaned into the vulnerability and found a welcoming atmosphere of people only wanting the best for me. My fear of holding others back, then, became invisible.

I can’t say to you every day will be pleasant. I can’t say to you every day will be easy. But every day will give you an opportunity to become more comfortable with who you are, disability or not. It also will present special moments of vulnerability to ask for some degree of help, ready or not.

As author Neil Gaiman writes in his novella “Coraline“: “Be Wise. Be Brave. Be Tricky.”

Be wise and accept that asking for help isn’t a big deal. Be brave as it can be hard to come to the reality of losing abilities, and it can be tricky to find the right words to share your story sometimes. But tell your story in your own words so they might light the way for another dealing with similar circumstances. There will always be a reason to share it.

Note: Andy Rusch wrote the column “Of Dragons and Dystrophin” for Muscular Dystrophy News.

Muscular Dystrophy News’ 30 Days of MD campaign will publish one story per day for MD Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofMD, or read the full series.