Duchenne Wisdom for the Younger Generation
—Family, Friends and Duchenne—
Despite my disability,
my abilities have NO bounds!
-Anthony DeVergillo
29 y.o. with DMD
When Anthony was 23, he had the opportunity to contribute to Matt Bellace’s empowering book Life Is Disappointing and Other Inspiring Thoughts. Below is Anthony’s section (shared with Matt’s permission), but this book is also chock full of stories about overcoming difficulties and barriers.
“During one of my speaking trips, I met a young man (Anthony DeVergillo) who inspired me with his poise and positive outlook, despite enduring tremendous suffering in his life. He was a senior in high school at the time, but I’ve followed his journey over social media ever since. Here’s his online profile:
‘My name is Anthony DeVergillo, I am 23 years old, and I have Duchenne Muscular Dystrophy, a muscle-weakening disease that confines me to a wheelchair. I try to find hope and inspiration in everything I do and everyone I see.’
Anthony’s condition is profoundly debilitating with a life expectancy in the late 20s. When I met him, he had little use of his arms and legs, and his speech was labored. Despite his physical limitations, he graduated high school and then summa cum laude from Rutgers University with a bachelor’s degree in Communication and a minor in Digital Communication, Information, and Media. I can’t imagine the tremendous physical and logistical effort involved in just getting through school, let alone doing well.
At a time when the major developmental milestone is independence, Anthony was forced to deal with needing others to function. Given those circumstances, I’m impressed by his ability to maintain such a positive outlook.
In addition, he’s pursued a career in digital communication at a pharmaceutical company. He’s navigated his way through a pandemic and economic recession but continues to do well.
When I asked him if he could share some insights into how he deals with suffering and continues to be positive, he wrote the following. Keep in mind the effort involved in just writing his response.
‘I live by this motto: Despite my disability, my abilities have no bounds! It reminds me to be grateful for everything I have and all that I am able to do, instead of what I do not have or what I am unable to do. When I am having a tough time, I repeat that motto over and over in my mind. This motto can be helpful to anyone – even if you are not disabled, you still have barriers and difficulties you need to overcome to live your life to the fullest!’
Anthony’s motto reminded me of when I was an intern working at a spinal cord injury unit of a hospital in New York City. My patients were mostly young men who lost their mobility in the prime of their lives. Even if two patients had similar injuries, their psychological outcome depended on their ability to view their new life as a challenge rather than a sentence. If they saw it as an opportunity to do things they had never done before their injury, such as learn to ski, surf (yes, surf), date, or skydive, then their outcome was better than if they focused only on what they couldn’t do. This was similar to what I learned during the pandemic. Focus on what you can take from the experience, not on what’s been taken from you.”