My time at Rutgers University, after 2 years of community college, was a rather unique experience for me. After my nurses were no longer allowed to drive me around in my accessible van, I had to find other people who could drive me and took half of my courses online. Big shoutout to my friends Eddie and Jason for offering your time to drive my nurse and I to class back then! This hybrid situation of virtual and in-person is an experience I advocate for now, but back in 2014 no one truly understood how to make virtual as engaging and social as in-person. All we had were discussion forums where you could respond to other student’s answers to questions via text. No true opportunities to socialize with my classmates or use video chat so I could see anyone. It was very isolating and felt more like self-study than a real class as part of a group. Back then, I initially regretted having such an irregular college experience because I missed out on so much, but now cherish it.
Why? Well for one, I am grateful to have had the opportunity to go to college in the first place. Many people I know living with a neuromuscular disorder had their health, lack of access to a good support system, or the (necessary) caregiving interrupt their dream of going to college. Or, they had to make the decision to do college completely online. Thankfully, I was able to experience both virtual and in-person! I also cherish this unique experience because it helped me discover the issues of virtual communication and brainstorm ways to improve the experience, much of what my failed startup Chat Human was about. Honestly, the virtual world still needs many improvements made, and my past difficulties and experiences will allow me to advocate better for those inclusive features in the future.
Another reason I cherish having gone to Rutgers was the opportunity to start my own student organization about sharing optimism and motivation, called RU Positive. It may not have grown or accomplished what I originally imagined, but it was great working with my friends Jenn and Paige on something meaningful. And if anyone wants to utilize my idea and start something at their college, please let me know! I really am content now because we likely motivated at least one person when we gave out candy on Halloween or hosted a fundraiser for Jett Foundation’s Camp Promise East.
Speaking of the fundraiser, I am obviously a huge fan of Jett Foundation and loved raising money for them at Rutgers, but I did not know how to delegate or avoid overexerting myself when planning it. I worked on planning for many long nights and weekends and was never satisfied because I wanted to move mountains for a cause near and dear to me. After giving it my all, my body responded by coming down with severe pneumonia, and that started me down the path toward better self-care and counting my spoons.
To sum it all up, my words of wisdom to you are to remember that no experience will ever be perfect – there is no need to regret what happened. Instead, as author Ben Ipock states, “Don’t regret the past, just learn from it!” Learn to enjoy the journey.
Anthony DeVergillo is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne muscular dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for many who live with a rare disease to be fully included in society.
Anthony’s goal for #RareDayInMyLife is to not only share his challenges and experiences with Duchenne, but to allow for others to share their story for the world to read. He hopes that sharing #RareDayInMyLife will better educate the communities around us in order to be more inclusive of people who live with a disability or rare disease.