by Anthony DeVergillo
Everyone has a story to tell. But does my story matter? Will people respond positively to it? Am I brave enough to share it without knowing where it will lead me?
This is my story…
I am 23 years old and graduated a year ago from Rutgers University with a Bachelor’s degree in Communication and a minor in Digital Communication, Information, and Media. I have Duchenne Muscular Dystrophy, a muscle-deteriorating genetic disorder that weakens my muscles over time. I have a metal rod in my femur from breaking it years ago, I have a metal rod down my entire spine from scoliosis surgery. I take blood pressure medicine for my cardiomyopathy. I take Boniva once a moth for my osteoporosis. I wear splints on my feet to keep them straight. I use an electric wheelchair at all times, and, oh yeah, I am an optimist at heart.
I had to deal with a lot of difficulties during my four year in college. In each of my classrooms I needed to have accessible desks that were at a certain height so I could rest my arms on them to write and do classwork and tests. I am unable to raise my hand, so I either had to call out, ask my nurse to raise their hand for me, or hold up a ruler with an index card taped to the top (I call it my flag). When I had to take tests there were special accommodations that I needed, such as extended time or taking my exam in a testing center or different room.
I was still able to write with my hands, but sometimes my hands got tired and I needed to either dictate my essay to my nurse or type it on my laptop, which is why I needed extra time sometimes. Also, filling in the little bubbles on a Scantron form was too slow for me, so I sometimes just circled the answers directly on my exam or had my nurse fill in the bubbles based on what answers I told them to fill in. When there was a team activity or project in class the rest of my team usually brought their desks near my table, since it was tedious for me to move myself to a different area of the classroom. Basically, everything that happened in the college classroom had to be accommodated to me, but it never really bothered me, because I know that everyone has different abilities and needs to adapt to certain situations differently.
Accessibility can be another issue, and not only at school, but everywhere that I go. The Americans with Disabilities Act does do its best to make sure any public building is made accessible to all those with disabilities, but it only goes so far. I have been to many restaurants and stores that are supposed to be ADA-compliant, but there was no way up onto the sidewalk or curb, the store aisles were not wide enough, the restaurant only had booths, or the tables were too low or close together.
We have even called places before and they have told us they were wheelchair accessible and had no steps. But when we got there, there would be one step or they would ask, “can he transfer out of his wheelchair?” Of course my answer was no and we were forced leave and go somewhere else. Some places even said that they fall under the grandfather clause of ADA-compliancy (I have no idea if that is even a real part of ADA law – to me it just sounds like an easy excuse) and they told me they did not have to be accessible. At my high school I was given a special key for the elevators and had to take a roundabout journey to get to my classrooms, or I even had some my classrooms moved to a different location. There was no ramp to get into the main office or onto the home team bleachers (ironically, the away team bleachers had a ramp). At college, accessibility was a little better, except when the elevator broke down or I needed to travel in my accessible van to get to a different part of the campus. Luckily, I did not have to use the Rutgers buses to get around, I used my accessible Honda Odyssey van with a ramp in the back (someone else had to drive for me) and had a special pass that allowed me to park in any parking lot.
It has always been hard for me to make and hang out with friends from school. For one thing, most of their houses and other places they went to were not accessible to me, so they always had to come over my house to hang out. Facebook is a lifesaver for me, it allows me to communicate with my friends more easily. Still, I would prefer to have more face-to-face, in-person contact with my friends over simply virtual contact over Facebook chat, email, or texting. Despite the difficulties, I have made many friends and even went to my junior and senior prom with a date, and I also took part in many clubs, including Peer Leadership and National Honors Society. Two years ago, Medicaid, my health insurance agency, took away the ability for my nurse to drive me anywhere, so I only get a driver paid for by the state if I went to college or a doctor’s visit. Other than that, now that I have graduated, I am stuck at home all day and can only go out on weekends and weeknights with my parents. That has made making and seeing friends even more difficult and left me feeling very isolated, and is the one thing that truly frustrates me. I do not get frustrated by much, but not being able to be independent and leave my house makes me feel almost imprisoned and lacking the freedom to do what I want to do.
I require a lot of assistance and help throughout my entire day. My nurse (or my parents during high school) have to help me with the bathroom, getting dressed, getting out of bed and transferring to my wheelchair, brushing my teeth, getting showered, feeding me breakfast, lunch, and dinner, putting my arms up on the table so I can use my laptop, transferring me back to bed, and positioning me in my bed so I can go to sleep. I use a ventilator with a nose mask all night to help me get deeper breaths all night (kind of like those machines people with sleep apnea use) and need to be repositioned two to three times a night from my right side onto my back or vice versa, so I also have a nurse that assists me every night. I also use a non-invasive LTV ventilator (also called sip-and-puff) throughout the day to keep my lungs expanded and strong, so I need a nurse to help with that. Basically, my nurses are my hands and legs; they are there to help me do what I am unable to accomplish on my own. This can become frustrating at times, but I have learned to be grateful for the assistance and the increased independence it provides.
That is just a small portion of my story. For the longest time I was incredibly shy and nervous about sharing my story with other people. I felt like I was an extravert stuck inside the mindset of an introvert. I did not think people would understand what I went and was going through. I had told my friends that I have Duchenne Muscular Dystrophy, a muscle-wasting disease that slowly weakens my muscles over time. What I never really shared was how my disability made me feel, my own perspective on life, what I have been through, and who I truly am. I focused more on my disability than on my abilities, and that made it hard for me to form my own identity outside of my disability. That was why I was shy and nervous for most of my young life, and that was what made the decision of whether or not to share my story so difficult.
Simply put, I did not think my perspective was worth sharing.
I was wrong.
When I shared my story and my perspective on life, I realized that a lot of people in that room had been through situations like mine. They may not have been through the exact same situation involving my disability, but they all have had challenges to deal with and things that were blocking their path. Most people responded really positively to me sharing my story, and started to ask me more personal questions about my life. That entire situation made me realize that by opening up to the world I finally had the chance to be myself – my true self. My friends would be able to relate more to me because there were a lot less unknown variables in our relationship. To put it simply, I discovered that sharing our stories allows us to discover more about the humanity we all share.
That is why I chose to major in communication for college. I had the chance to share my story, but I wanted to develop my understanding of what others have been through as well. What I learned was that the way we communicate, both verbally and nonverbally, is a major part of forming our own identity. No one can really understand our identity without us sharing it though. That’s where the art of storytelling can be really effective. But how do you get to the point that you are ready to share your story? I was able to get to that point because I was tired of letting my disability stop me from being the social and extroverted person I truly am. I think a lot of us have that challenge – we think that no one really cares or is interested in us. But do you really know that for sure? If you haven’t shared your story before, then you have no idea how people will respond to it. Sure, there may be some negative response, but I can guarantee that many people will be able to relate to your shared humanity.
To put this all in perspective, there can be difficulty with other people accepting my disability and treating me like just another person. The problem is the fact that people are afraid of the unknown, and they do not want to say anything bad or hurt my feelings, so some people avoid me completely, ask me strange questions, or simply stare at me. I completely understand when children stare at me, they don’t have the experience or knowledge to understand my situation, so I most often tell them about why I am in a wheelchair and about my disability. It really hurts when adults stare at me and do not even try to talk to me or understand my situation or disability or they say “what happened to you?”
That is the main reason why I choose to share my story – to increase the level of acceptance of my disability and I. I also share my story for all of the people with Duchenne Muscular Dystrophy and any other disability or barrier who are unwilling or unable to speak up and share their story. What was once a fear and misunderstanding of the unknown can evolve into a level of acceptance like no other – just by sharing my philosophy, perspective, and experience – by sharing my story with the world.
We all have dealt with loss. We all have been in some negative situations. We all have loved. We all have bad days and good days. We all have something that slows us down and makes it harder to be who we want to be. All of that can relate to our humanity. That’s why it is key to share your story. And not just share it once, but many times throughout your life, because your story is forever changing and forever being written. Don’t let someone else share it for you, you’re the only one who has the power to share it. Your story has the power to attract people that understand and care about what you’ve been through. Those are the kind of people that you can truly call friends.
Your story has the power to help others heal emotionally and motivate them to move forward no matter the challenge in their path. I shared my story – now it is your turn!
So what do you say?
Are you ready to communicate and Share Your Story?
About the Author
My name is Anthony DeVergillo and I am a 23-year-old optimist living with a muscle-wasting disease called Duchenne Muscular Dystrophy.