Sunrise Medical - Quickie SEDEO Ergo

The Power of Role Models

Seeing how others face adversity helps a writer find acceptance and hope

In recent months, I’ve experienced a noticeable decline in my arm and leg strength. My limbs feel heavy. It seems like they succumb a little bit more to gravity each day. One night, I tried to roll over in bed, and it took me six attempts — six! — to succeed. By the time I finally flipped over, I felt like I had just gone to the gym.

I know that progressive weakness comes with the territory of my disease, a type of distal myopathy called Miyoshi myopathy. In the 10 years since I began experiencing symptoms, I’ve adjusted to leg braces, crutches and a scooter, and I will eventually need to use a wheelchair. It’s something I’ve accepted and prepared for, and I remind myself often that a wheelchair will give me more freedom than I have now.

However, I’ll be honest: I’ve been frustrated a lot lately. I may be mentally prepared for what the future holds, but it doesn’t make living it any easier. The soreness, pain and weakness grind me down constantly. Some days I want to pout. I want to throw things. I want to yell at the top of my lungs.

It is in these moments of exasperation that I am reminded of the role models who have helped me through tough times before, whose examples when facing adversity gave me the strength and motivation to turn my life around and learn to focus on the open doors, rather than the ones that closed unceremoniously in my face. 

Acceptance has not come easily. At age 21, I was asymptomatic, a young adult living in Boston and enjoying life. Once the symptoms began — fatigue here, a muscle spasm there, followed by unexplained weakness — my life quickly unraveled. Depression took hold of me for several years. I was jealous of those around me, angry that my life was descending into a series of endless falls. 

Then, in 2013, I was jolted back to reality when my co-worker and close friend Carly passed away from cancer. In June 2012, we were working together on a project, and by February she was gone. The way she handled such a horrific diagnosis with grace and dignity (she was only 24 — it still boggles my mind), is the most amazing thing I have ever seen. 

Her passing made me re-examine how I was handling my own circumstances. I realized my life could not continue down the path I was going. Something had to change.

Although 2013 was a difficult year, it was a turning point. To this day, I consider Carly to be an angel, sent at a specific moment to redirect the course of my life. I think of her every day, and she continues to bring me great strength in difficult moments. 

Since then, I have found myself seeking out role models in my day-to-day life, in articles and in books. Many times, I stumble upon their stories by accident. In this way, I have gained several role models who encourage me on down days. Some are my good friends. Many are strangers I hope to meet someday, if only to say thank you. Others I’ll never get the chance to meet, since they have already passed away. Each person encountered adversity of some sort, but they did not let whatever roadblocks they encountered derail them from maximizing every day. 

When I am down, they pick me up. On days when I feel like I have no strength, they move my arms and legs. They are inspiring, but not in the condescending way that the term often gets thrown around. They didn’t do anything “brave” or “heroic” or “unexpected” for someone in their situation. They merely lived life to the best of their abilities. Disability and adversity was not their whole life, just a small part of it. Carly, for example, was so much more than cancer.

Role models are everyday people doing everyday things. They don’t possess traits of a select few; they are just like you and me. They are relatable, and within their stories are lessons that anyone can benefit from. Within the MDA community there are so many whose stories have helped me in meaningful ways — Christopher Rush, Pete Frates, Mattie Stepanek — the list could go on indefinitely.  

Today, I have reached an equilibrium in my life where, although I may not be thriving as well as I’d like, I’m able to endure. I’m able to persevere. I’m able to achieve my dreams and goals. I’m able to accept my circumstances, while never giving up hope for better days ahead. 

I would be nowhere without my family and friends. But I owe a special debt of gratitude to those ordinary, everyday heroes whose examples I have been able to draw from — who gave me reason to believe in myself again.

Chris Anselmo, 31, lives in Connecticut with an adult-onset form of neuromuscular disease. Read more about the role models who have influenced him on his blog sidewalksandstairwells.com. Anselmo also is a Quest and Strongly blog contributor. 


How to Be a Role Model: Share Your Story

Here’s another lesson I’ve learned: We all have the capacity to be role models for others. If you have experienced adversity in your life, you can be a role model. It doesn’t require a special skillset and you don’t have to live a perfect life to make a difference.

I know what you’re thinking: “I live the most boring life ever!” or maybe, “I’m not doing anything that anyone else isn’t doing.” Well, guess what, you can still be a role model.

We have all lived an experience that someone else is just starting to go through. We’ve overcome — or are still dealing with — challenges that someone else is coming to grips with. 

Sharing your journey can be daunting. But I guarantee you, if you tell your story authentically, sharing the good and the bad, the ups and the downs of what you are going through or struggling with, you will make a world of difference for someone. 

A well-timed story — your story — may very well change the trajectory of someone’s life.


Find Stories That Inspire Hope

Read stories from around the MDA community — from personal perspectives to research news — on MDA’s Strongly blog. If you’re interested in sharing your story on Strongly, contact us at strongly@mdausa.org.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.