30 Days of MD: Learning to Accept My Disability

Photo courtesy of Evi D.

Day 13 of 30

This is Evi D.’s story:

Hi! I’m Evi, 33 years old, and living in Belgium.

I have lived with FSHD since I was a kid. It progressed slowly and for a long time, only my facial muscles were affected. I was 15 years old when the full effects of the disease kicked in. I couldn’t run anymore or lift things above my head. My back started aching, and I started to walk “funny.”

I was having a hard time accepting my declining body in my teenage years. I felt so angry. I couldn’t accept any help and even refused to go on a school trip to Italy in my last year of high school, just because they were going to make me use a wheelchair. At that time in my life, I dreaded the thought of ever having to use a wheelchair. For many years, I gave myself only two options: push myself or just stay home and let nice experiences pass me by.

Now I can say that I’ve grown. It took a long time but three years ago, I got myself a manual wheelchair and last year I bought a handbike. It takes me places I could not have dreamed of before. I can travel and explore again, and I’ve learned when to walk and when not to. I still love to take a walk in nature at my own pace, but now I don’t need to worry anymore about not being able to do anything afterwards because my wheelchair is right there for me.

Although traveling with a wheelchair is challenging and takes a lot of organizing skills, I am never again going to stop exploring the world because of this disease. Traveling has always been something I loved so much, and I’m so proud I was able to make this switch in my head.

With my story, I just want to emphasize that having FSHD is not only about deterioration. For me, it’s more about mental growth and being creative than it is about anything else. You need a lot of skills and mental strength to live life with a disability. I’m not quite there yet but I’m growing. For me, having FSHD is learning to cope with the grief of losing one ability after another and still being able to thrive in life.

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.