My Voice: Anthony DeVergillo, 19 years old

When you meet Anthony DeVergillo in person, you can’t help but leave the conversation with a smile on your face. This almost 20-year-old is the definition of optimism. In fact, he has made spreading optimism his life’s work. From an early age, Anthony realized he had two choices with his Duchenne diagnosis – let it defeat him both physically and emotionally, or challenge it head on with a great attitude and the power of positive thinking.  Through his blog, Anthony is reaching members of this community and helping them turn their lives around by simply adjusting their attitude. That’s why we are thrilled to introduce to you our Featured Voice for January, Anthony DeVergillo.

 

Meet Anthony

How old are you? Where are you from? What are you studying in school? What are some of your interests?

I am 19 years old and will be turning 20 at the end of this month on the 28th. I live in Bedminster, New Jersey and have been there my entire life. I am in my second year of studying Communications at Raritan Valley Community College. After I graduate from RVCC in May of this year with an associate degree, I will continue my studies at Rutgers University to obtain a bachelor degree. My interests include communications (of course), video editing, audio editing, graphic design, web design, web programming, writing, singing, lyric writing, and poker. I like to play poker on the weekends with my family, but hardly ever win. ;) With all of these interests, I tend to find myself jumping from one to the next; it is hard for me to just concentrate on one.

When did you learn about Duchenne? How do you answer people’s questions about Duchenne? What do you think is the biggest challenge as a person with Duchenne?


I learned about Duchenne not too long after I was diagnosed at age 3.  My parents tended to always be open to me about the disease, although they did not tell me the more saddening truths until later on.  They would answer any questions that I had and I could not be more grateful for that.  It may come as a surprise to some of you, but knowing about my disease is what allowed me to learn to accept it.  My early knowledge of Duchenne is what made me stronger in the end.

 

Whenever someone asks me a question about my disability, I am very open about it.  I tell them that they can ask me anything they want to; nothing is too personal for me to answer.  The funny thing is the fact that most people who ask me why I am in a wheelchair are children.  Most of the time they just stare and wonder why I cannot walk, so I just smile and that lets them know I am happy the way I am.  I know that they are only staring because they do not understand, not because they think I am strange.  If I were in their position, I would be doing the same exact thing.  So why not help them understand my disease better?

 

The biggest challenge as a person with Duchenne is dealing with having to adapt your way of life each and every day.  By having to do things differently, I felt abnormal and not like everyone else.  I may see another person doing something so easily, while it is extremely difficult for me to do.  I have had to adapt to many things: using a wheelchair, eating, raising my hand in class, getting dressed in the morning, going to the bathroom, taking a shower, using my computer, writing with a pencil, and using a non-invasive ventilator.  To overcome my frustration and accept that I can do anything, but just in a different way, I was forced to find ways to do what I love.  I also had to realize that those with Duchenne are not the only ones forced to adapt to such a hindrance.  We all, no matter who we are or how we were raised, have a barrier of our own that blocks our path to optimism; a barrier we must learn to overcome no matter what.

 

I started a blog all about living life to the fullest and making the best of any situation two years ago (it will be the two year anniversary on January 28th of 2013). My blog is called "The Optimist's Guide to Life" and it has had over 27,000 people come to it to read the posts and spread the good feelings.  The response has been amazing, with all the comments, likes, shares, and collaborations that have been made.  My blog has been featured in Ode Magazine (now called The Intelligent Optimist) and several websites, I have attempted to reach Ellen, and I have been given a plaque from my town’s fire department, a proclamation from my mayor, and the Young Heroes Award for spreading Optimism to my family, friends, and peers.  I am excited for what the future has in store for my message, my blog, and I!

 

I started my blog because the way one perceives life is dependent on one’s attitude. Sure, life may be difficult at times, but it will tend to be less difficult if you balance the good and the bad. That is what being optimistic is all about – finding that balance. The "Optimist’s Guide" contains writing on topics such as hope, inspiration, and motivation, and is for people who enjoy being happy and for those who need some motivation to smile on a bad day. The motto for my blog is “Spreading Optimism, One Smile at a Time” and I can definitely say that it has made many people smile so far, including me. Also, my personal motto is “Despite my disability, my abilities have NO bounds.” That is how I live, and that is how I am trying to teach others to live all over the world with my blog and, of course, with Optimism.

How have you maintained your great attitude and optimism? Do you find that many people with Duchenne share your attitude? How about their parents? What makes you smile the biggest?


I maintain my great attitude and Optimism by continuing to spread my message throughout the world.  I also like to listen to music and write, which not only allows me to share my view, but also gives me a chance to vent my frustrations and annoyances.  Finally, I learn to cherish the smaller things in life and find the good that exists in any situation.

 

Most of the people who I talk to on Facebook and in real life are positive people who have begun to accept their life and disability.  It is those who have been sheltered from the whole truth of their disability that I believe are not as happy as they could be.  The unknown is much scarier than the known is – something that I have always believed.  It is almost impossible to accept and overcome what you do not know you have.  I believe the right age to tell someone that he has Duchenne is when he starts asking questions about it.  Some other men with Duchenne, even after learning all there is to know about their disease, are still unable to accept it and live with it happily.  Those are the people I hope my blog is able to reach.

 

Most parents of those with Duchenne are very strong and give everything that they can to make their child happy and healthy.  They love their child as much as any mother and father would.  But sometimes, their unwillingness to accept the situation of their child is what makes it even harder for their child to accept it all.  They do not always realize how huge of an impact they have on their son and his future.  If the parents are Optimistic, then I believe there is a much greater chance of their son being positive and Optimistic too.  Finally, parents sometimes give so much to their son that they forget about their own well-being.  For that reason, I believe that the parents also need their own support system when times get tough and they need someone to help them out, emotionally and physically. 

 

What makes me smile the most is when my words, blog, and overall attitude are able to help someone else find the light in the darkness.  Sometimes it takes a longer time for my words to set in, and sometimes my words are of no help at all.  Either way, I am glad that I have the means to share my view with so many people.


Finally, if you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?


I would love to have dinner with Doctor Who, Taylor Swift, and my old friend with Duchenne. 

 

Doctor Who is a fictitious “doctor” who travels through time and space in order to save worlds from destruction.  I would love to have dinner with him because he would have amazing stories to tell and I would love to travel with him and spread Optimism through space AND time.  Imagine that!  He also may have found a cure for Duchenne in his numerous travels, and that would just be the icing on the cake. 

 

I actually had a dream once that Taylor Swift had agreed to make my poems into songs and help me promote my blog and my Optimistic view.  So it would be awesome to have dinner with her so that dream could become reality.  The thing that I really enjoy about her music is the fact that each song tells a story.  And hey, possible girlfriend? ;) 

 

Finally, my old friend has Duchenne too, but he has not been able to accept living with it.  I would like to have dinner with him and try to show him the beauty of life, how to overcome his anger and frustration at the world, and how to cope with his disability.  I do not want anyone with Duchenne to be mad at the world, especially someone I personally know; I want my old friend, and everyone else with this disease, to try to live their life to the fullest.

Meet previous Featured Voices




Will Nolan, Communications Director
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