It’s a lot to take in when a doctor informs you that you have – in his opinion – an inoperable tumor in your brainstem and six months to live.
Fortunately, that doctor turned out to be wrong; I had a second opinion a few days later that showed it was merely a cluster of cells that was bleeding in said-brainstem (Also bad, but not deadly). Looking back on it though, had the doc been right, I would have spent nearly 2 percent of my days left on Earth sulking, not processing; not doing what I was passionate about. Yes, I was in shock. It is understandable that someone might just want to disappear. But I’m not proud of my reaction to the news. I’d like to think I’d celebrate the life I have left if faced with a similar situation again.
Fast-forward through 3 weeks of trying not to think about my chances of dying from anesthesia. I ended up getting my brainstem jabbed at for about 6 or 7 hours; some people call it surgery. Due to this knife fight between my brain and the team of medical professionals, I have nerve damage through half of my body. I have vision issues in my left eye, slight paralysis in my left foot, and my personal favorite: balance and coordination issues.
I get to say I’m a Paralympian and a member of the US Soccer team. Sean Boyle Paralympic Athlete (Soccer), US Soccer
Until the day of my diagnosis, I was a goalkeeper on a Division 1 soccer team. I was good, not great, but it was my first love. I spent countless hours avoiding other responsibilities to practice keeping a round ball out of rectangle. My diagnosis didn’t just stall my playing days, the medical team that battered my brainstem also gave a kidney shot to my pride, telling me I would never play soccer again. Fortunately, they, too, were wrong.
Within 2 months of surgery (I wasn’t really medically cleared so don’t tell anybody), I was in Atlanta trying-out for the US Para 7-a-side National Team, which would be going to compete in the Rio Paralympic Games that same year. Relearning how to walk turned out to be a breeze compared to keeping the ball out of the rectangle. Jumping and coordinated footwork were purely theoretical for me. But it got easier, and easier, and at this point I’m lucky enough for US Soccer to fly me around the world and pay me to protect the rectangle for the country. I get to say I’m a Paralympian and a member of the US Soccer team.
Outside of my time with US Soccer, I also had to figure out my life again. I decided that education was going to be my saving grace. I moved out and found myself living in Boston, attending Northeastern University. It turns out, when I didn’t have to mold my body for 6 hours a day with the help of a tiny many who only spoke in profanities, I have the energy to follow my intellectual passions. I am deeply invested in working in financial inclusion and payments, ensuring financial access for all.
Heading into graduation in May 2020, I have already lined up an amazing opportunity to work for Mastercard post-graduation.
Finally, we get to the point of the article, #Lookcloser. When somebody looks at me, they don’t see disability, but hey—sometimes I can’t see them at all (that’s a vision joke, for folks keeping score at home). I’m incredibly privileged in the sense that all of my impairments are invisible, and are triggered by physical stress. I struggle on my own terms and don’t have to deal with any preconceived stigmas surrounding my disability unless I openly disclose.
But not everybody has the same opportunity to read the room and decide their path like I do. When you hear the campaign #Lookcloser, take my story and understand that 1. It could be anybody that struggles with a disability, and 2. Anybody that struggles with a disability probably has a fantastic story with amazing accomplishments attached to it.
Author’s note: If you would like to discuss any element of the program, or if you know a soccer player who has Cerebral Palsy, had a Stroke or a Traumatic Brian injury who’d like to play for the US Para 7-a-side National Team, contact head coach Stuart Sharp at firstname.lastname@example.org