Life

When I was 6 months old my parents were told that I would not live past my third year. I was diagnosed with a genetic neuromuscular disorder called Spinal Muscular Atrophy (SMA) Type 1. Because of this disease I have never been able to run, walk or stand. The most understandable and easiest way for me to describe my disability is that, like someone who is paralyzed, I am unable to move any of my limbs, but I can feel everything. The only strength I have can be found in my right thumb which I use to manipulate my wheelchair and my strong jaw which I constantly use to express my opinion and make myself heard.

Because I was expected to live only about half the length of your average car loan, my parents demanded that I live the fullest life possible in the time I did have. So, I have had the opportunity to see and do some stunning things. I have flown over the Grand Canyon in a helicopter, ate a meal beside Niagara Falls, visited sports events across the country, and met the most amazing people, including our President, Barack Obama. No one knew how long I had, so every day mattered.

Most people don't get the chance to live their lives like it could end tomorrow. They never get the chance to live by the code “Make every moment count.” I have. I don't view my disability as a hindrance, but instead embrace it as something that has allowed me to live more fully than many people ever dream. While my disability does keep me from doing some things that I want to do, things like playing sports and going for a jog around the block, it also keeps me from doing some things that no one should ever do. It keeps me from wasting my time. It keeps me from worrying about the little things.

Instead, my disability forces me to do things that matter. It forces me to think, not on the shallow level, but really think about the world and what impact I want to make on it. Most people don't get forced into this type of thinking. They assume they have all the time in the world and can put off building their legacy until later. I can't! I, more than most, appreciate how precious time is. I appreciate what it means to have it and refuse to waste it.

Now, I am 23 years old and have outlived my life expectancy by more than 7 times. I have grown to understand that I have been blessed with the gift of time. Time I should not have. I do not think that time is given without reason. I am no exception. Because of this, I cherish my time and refuse to let it slip away. I will use the time I am given to help change the world and, hopefully, inspire others to do the same.

This blog will be about the world. It will be about my perception of it and what should be done to make it better. There are no topics that are out of bounds and there are no topics I will not talk about. I hope to use this as a form of public consciousness about the world through my eyes.