Recently, I got to attend the annual Spinal Muscular Atrophy (SMA) Conference. This was my first time being able to go (because it was held at the Westin Hotel in Kansas City about 20 minutes from my apartment), and while I feared that I was overly excited and had created far too lofty expectations, it turns out that I had no reason to worry. The conference, which was the second most attended conference ever for “Cure SMA,” not only met my high expectations, but surpassed them in every way. I had a phenomenal time, met some amazing people, and learned a lot about how to live with this horrible disease. In addition, I got the opportunity to share some of my own experiences about creating a successful life with SMA, as a member of a panel discussion that was held on the final day of the conference. After spending the first few days of the conference getting to meet and talk with some of the inspiring individuals trying to figure out how to give their disabled children and families a fulfilling life (much like my parents did many years ago), I felt extremely honored to get to pass on what I have learned from battling this disease for almost 30 years. This event touched me and impacted my life in so many ways that there is no way that I could fit everything I want to share with you in one post. So, in order to make sure that I adequately discuss all of the important things I learned, I will be writing several articles about the conference over the next week or two. Today you get the second of these posts (here is the first), which focuses on a very important life lesson that was brought to my attention after the conference, as I was looking back at the amazing experience I had.
As I mentioned above, on the final day of the conference I was given the honor of participating as a member of a panel discussion. The panel consisted of about a dozen adults with SMA, all of whom had managed to overcome their physical limitations to lead successful lives. During the session, which was entitled “It’s A Wonderful Life,” the audience was given the opportunity to ask anything they liked about how we were able to rise above the obstacles presented by our disability. They could inquire about anything from moving away from home, to how to arrange around the clock home nursing care, to how to travel internationally with a power wheelchair (yes, there are individuals much braver than me who do this). Not only could the audience ask anything they wanted, but they could receive honest answers straight from people who have actually experienced these parts of life with SMA. In addition to being a way to pass on some of the experiences we have had and the things we have learned to the next generation of individuals with SMA, this question and answer session was also designed to show the parents of young, disabled children that you can still lead a happy, successful, fulfilling life despite the obstacles presented by this disease. This was the first year that they had concluded the conference this way, and not only was it a huge success, but it was also the most attended session of the entire weekend. It was a great source of valuable information for others facing this disease, and by sharing all of our success stories and giving young families effected by SMA some hope for the future, this panel discussion ended the conference on an uplifting, positive note.
Participating in this panel made me really reflect upon my life. Listening to others with SMA tell their success stories, as well as sharing a few of my own adventures with overcoming this disease, caused me to look back over the last 28 years and think about everything I have experienced. More importantly though, it helped me remember some of the most influential people in my life, who helped me create this wonderful life I lead. As I thought about all of the young parents in the audience that were doing everything they could to help give their disabled child a full, happy life, I was reminded of my own mom and dad. I realized how fortunate I am to have two amazing parents, who have worked so hard and sacrificed so much to give me every opportunity at a “normal” life, the life I have always dreamed of having. As I watched all of the able-bodied siblings of people with SMA work as volunteers throughout the conference, I was reminded of my brother and sister. Despite the fact that they missed out on certain activities growing up due to my physical limitations and had to mature at a young age to help take care of me, they never made me feel “different,” and I know that they would give anything for me to be healthy. As I saw all of the relatives, friends, and caregivers, who gave up almost a week to allow their disabled loved ones to attend the conference, I was reminded of all of the people close to me that have shaped my life. These incredible individuals have willingly and openly given their time, their energy, and their love, just so that I can chase my dreams and be happy. Each and every one of these people, my parents, siblings, friends, played a major role in my life, and their selfless, generous acts of kindness have allowed me to be as successful as I am.
In thinking about all of the influential individuals who have given me the ability to achieve so many of my goals, I gained a new perspective on some things. Seeing all of the other families at the conference and thinking about how my family was in that exact same situation 25 years ago helped me to see my life in a different way. It helped me to realize just how lucky I am. My parents were told that I would not make it to my third birthday, and for many of the young families at the conference, this is the unfortunate reality that they will face. For whatever reason though, I have beaten the odds and overcome my physical limitations to lead a long, fulfilling life (as did everyone else on the panel). I am almost 29 years old, living on my own, paying my own bills, and enjoying a successful, happy life. And while I certainly worked hard to get where I am, and I also know that there was some luck involved, the most important factor in my success was the people around me. My phenomenal family, my amazing friends, and everyone else who has touched my life over the years are the ones who deserve credit for my success. Without these incredible individuals and everything they did for me, I would not have been on that stage the last day of the conference, and in all likelihood I would not be around at all. These are the people who should be looked up to and applauded for their achievements, as they are the real inspiration.
The title of the panel discussion, “It’s A Wonderful Life,” was chosen to illustrate how you can still lead a happy life with SMA, and every member of the panel definitely embodied that in numerous ways, but it goes even deeper than that. Even for those of us that have managed to beat this disease and be successful, it is important to remember how “wonderful” life is and just how fortunate you are. While we may be disabled and have to deal with more than most, when you consider the fact that most of the children born with SMA never make it to adulthood, let alone lead independent, fulfilling lives, you see how lucky you have been. Gaining this perspective makes you truly appreciate your life, and it makes you think about all of the people who gave you the ability to beat this horrible disease, because without even one of these individuals, you may not have accomplished everything you have. In some cases, you may not have made it at all. It is so crucial to keep this idea in focus and appreciate the influential people in your life, not only because they are the ones who paved the way for your success, but also because they are the people who can show you how to live the “right” way and make the world a better place. These are the people who know how to make life “wonderful.”
While the real goal of the “It’s A Wonderful Life” panel discussion was to inspire young families with SMA and pass on real-world experiences of what life is like with this disease, it accomplished so much more than that. It helped me (and I am guessing everyone on that panel) to realize how fortunate we are, and how fortunate we have been to have so many awesome individuals in our lives. This is something that we all need to reflect upon, because we all have had people touch our lives in incredible ways. These amazing people are the ones who gave you the ability to find success and happiness, and while they may not have wings or a halo (just like Clarence when he helped George Bailey in the movie), that does not make them any less miraculous. Be sure to remember the “angels” in your life and take the time to really appreciate the incredible impact that they have had on you. Keep in mind that while you are the one who built your life and achieved your goals, these are the people that gave you the tools and skills to do so. And most of all, if you want to be happy never forget that even when you are down on your luck and everything seems to be going wrong, that “It’s A Wonderful Life.”
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