On Friday night, I gave this speech at the Muscles for McKenna Gala raising money for Spinal Muscular Atrophy:
Hi, My name is Jimmy, and I have SMA.
I know most people here are already familiar with the disease and its debilitating effects, so I don’t want to speak on the negative aspects of my disability.
Instead I want to tell you about what I like to call one of the gifts of SMA. And I’ll start by telling you a story:
One night I was out with some friends at a restaurant very close to here. After a fun night out together, we all went our separate ways and I began making my way home riding along Market Street. Then, something terrible happened. The back part of my seat dropped to a reclined position and so did I. Unable to drive or even see in front of me, I was helpless. Helpless until the bellman at the Lowe’s Hotel spotted me and positioned me in an upright position. Thankfully, I was saved and I made it home safely.
I tell that story to show that there always seems to be someone there when I need them, which has taught me to have an unwavering faith in humanity. Sure, I have formal supports in place, such as the nursing care I receive provided by Medicaid, but not all hours of the day. And, frankly, sometimes I don’t want a nurse around. It is the informal supports, the people who don’t need to help but want to help, that enable me to live a life I love to live. And I’m grateful! I’m grateful for my coworkers at Independence Blue Cross; I’m grateful for my family and friends; and, I’m grateful for the countless people who I encounter on a daily basis who support me as I live my dream. And right now I’m in a room full of people who don’t need to help but want to help, so I just want to say thank you from the bottom of my heart. I appreciate it!