Perspective Is Everything

Hi, I’m Ben Bourne Flosman. The idea of writing a brief piece about my life is interesting and to put it all into 1000 words or less is difficult, so I’ll try and sum mine up with this idea: focus on life’s opportunities, not its obstacles. 

Since I was a child, these words, albeit usually unspoken, have ruled my actions. I was born with a rare disease called Spinal Muscular Atrophy (SMA). SMA involves a lack of a protein imperative for fully successful motor neuron growth called SMN1. Basically, my motor neurons do not grow as well as the average individuals’, and my muscles are stunted in their growth. I use a power wheelchair and have little physical function. Obviously, there are things I cannot do, moonwalking being one of them. Though, for most things, I am able to adapt, modify and participate with a little extra planning.

I was born on October 15th, 2003 near Hamilton, Ontario. I was a happy kid. As a child, my parents wanted me to be just as involved in activities as anybody else. So, I signed up for swimming lessons, band, and the talent show (where I sang Baby by Justin Bieber… I'm very relieved there is no record of this performance). 

Sometimes though, I felt like an outsider. Once in my middle school gym class, we were playing handball and I wanted to be the goalie. My gym teacher did not think this was a good idea, and did not allow me to be goalie, which meant I couldn’t fully participate in the game with my friends and classmates in the way I wanted. In his eyes, there was a chance I might have gotten hurt despite my disease not making me any more susceptible to pain than anyone else.          

It is experiences like this, everyday experiences that leave me feeling excluded and frustrated, reminding me I am fundamentally different than everybody else. However, it is also these experiences that encouraged me to prove I am no less capable of accomplishment and belonging than any other human. Being treated differently has affected my confidence. To build my confidence, I focused on excelling in high school. I took on numerous speaking engagements, improved academically, and involved myself with my community. I have travelled the world, attended summer camp and made lasting friendships. I graduated and am about to begin university.

Through these efforts, I learned a very valuable life lesson: proving myself to others will not bring me fulfilment. For that, I must look within. It is essential to realize exceeding expectations of others matters very little. As an old man, when I look back on my life, I will want to remember two things: what brought me fulfilment and happiness, and what I gave to the world and those around me out of the goodness of my heart, and not the desire to impress others. As a 17-year-old I try to focus on these two things, and I try to be grateful for what opportunities I have.

I’m pleased to partner with Roche Canada as a contributor to SMA My Way, and share my personal experiences with the SMA community. 

To learn more about my story, including many others, visit www.SMAMyWay.ca - a support hub for the SMA community in Canada including those living with SMA, as well as their caregivers, family and friends.