31 Days of SMA: How SMA Made Me Into a Scientist

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sma type 2 | SMA News Today | Ben Lou sits in his wheelchair on a beach at sunset. He's wearing a USA sweatshirt and a broad smile.

Photo courtesy of Ben Lou

Day 12 of 31

This is Ben Lou‘s story:

Hi, I’m Ben, a mathematician, physicist, and philosopher studying at MIT. I also have SMA type 2. You’ll find me in the mornings pondering my problems in bed. I’ll be reading a textbook while using the restroom. At night, I’ll be watching lectures while I brush my teeth, up to the moment I close my eyes.

SMA is a great challenge I face. I deal with it in the same way I deal with any other obstacle: I spot the opportunities that allow me to turn the challenge into my advantage. For me, this opportunity takes the form of STEM (science, technology, engineering, and mathematics). I firmly believe that anyone who is willing to put in the time will be able to experience the vast beauty of STEM. The question is, are you willing to put in the work building your mental muscles?

Like it or not, with SMA there will be things I can’t do; I’m simply not going to get up and run a marathon. You can view this as a tragic loss inflicted by SMA, or you can view it like I do, as one less distraction to worry about!

There is so much beauty in this world, and STEM is my way of accessing it. Consider the staggering amount of physical processes occurring right now that enable us to be here. Did you know that if you added just the electrons from a single drop of water to the Earth, you’d change the voltage at the entire surface of the earth by millions of volts? Or that in your body, the number of protons matches the number of electrons with fantastic precision. If there were even a tiny excess of, say, protons, in your body, you’d be blown to molecular bits instantly by the strong electric repulsion. It’s beautiful how the math and physics around us interplay with such delicacy to allow for the amazing complexities of life.

There is a great underrepresentation of disabled people in STEM, which is a pity. Despite having never taken a single step on this earth, I can soar across the exotic, awe-inspiring world of STEM. And to my fellow young people with SMA: so can you.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.