I am Polish. I have brown hair. I like to laugh. I have Spinal Muscular Atrophy. These are all facts. Facets of my identity that carry some negatives, some positives, some quirks.
I'm Polish, so I sunburn pretty quickly. I get to eat barszcz and perogies during the holidays and I'm able to pronounce last names like Jedrzejczyk. Some negatives, some positives, some quirks.
From an external perspective the negatives are easily apparent with SMA, a disability that weakens all of my muscles. Stairs are not my friend. Neither are high shelves or objects weighing more than 5 pounds. There are workarounds to everything, like rotating shelves or elevators, but they all cost money. In fact, if I had to sum up the negatives of SMA in one word, it'd be: expensive.
Independence is fantastic, but it’s expensive. Hiring someone to help me get out of bed everyday costs money. Traveling is great, but additional rentals and extra tickets and rooms for my assistant takes more money. Driving on my own is amazing, but the car conversions needed for the vehicle to be driveable for me cost more than the car itself. The negatives are real and not always easy to figure out, but frankly they’re also less interesting; both to me personally and to the message I hope SMA awareness month is able to spread.
The positives are just as real as the negatives, and for me they’re a lot more fun to focus on. On a light-hearted note, I've never stood in a line at Disneyland, or at a ferry, or in a museum, and hardly ever at an airport. I got to drive the Staten Island ferry when I was a buck-toothed 5-year-old smiling at the captain hopefully from my tiny wheelchair. My similarly-aged cousin who vacationed with me my entire life would fume every time I got free sprinkles on my strawberry ice cream while the vendor gave him a plain scoop. Privilege isn’t a word often associated with disability but modern society does afford us some small daily wins.
On a more serious, but still positive, note--I've had a lifelong sense of clarity and motivation that arose from having SMA. From a young age I knew my brain was my vehicle to freedom and independence. The able-bodied people around me had the opportunity to succeed or fail while still having a chance of moving out of their parents house. To not do well in school and still find a job that paid their bills. For me failure was more expensive. This became a source of motivation I've tapped into again and again as I’ve worked through school, internships and now my professional career.
I've had positives like problem-solving and resilience ingrained in me by necessity. Something like picking your phone up off the ground is no simple task with SMA. It takes multiple household items, angles, and planning - but it has to get done if you're home alone and in desperate need of pizza. Rinse and repeat this exercise for every little thing in your life and suddenly problems at work or at school don't seem overwhelming or infeasible.
I've been able to pursue an awesome sport like power soccer at the highest level of competition. Most people my age are 10 years or more removed from truly competing in team sports throughout high-school and maybe college if they were great. My days as a power soccer player are just starting. I get to play a sport I love until I can’t move anymore since I’m using metal and an engine to score goals instead of my foot. It's even cooler that I get to do it in an LA Galaxy jersey, that my family is able to watch the games live with commentators online and that I get to travel all around the country to do it. I play in a competitive league with 100s of athletes working every day to get better and that gives me motivation to do the same. With that comes another unique opportunity to develop my character and learn the craft of mastering a craft in the athletic environment that has drawn me in since I went to my first NBA game as a 6 year old. I’d love to be able to score a diving header in able-bodied soccer down at my local YMCA in addition to playing power soccer, but I certainly wouldn’t trade one for the other.
The quirks also exist and they're things I've come to love about my life. I'm the center of attention most of the time, which at first could be intimidating. I remember being lifted into a swimming pool when I was about 10 and all thirty adults stood and stared as my grandpa carried me down the steps. I soon realized that all eyes are on me, even if I'm not in my summer shape. When I walk through a zoo kids are often as interested in my wheelchair as they are the lions. They stop to play with the brakes or push my wheel before their parents are able to run over in horror telling them to stop touching some poor stranger. When I go to heavily religious areas on vacation, I receive untold amounts of prayers and blessings from strangers wishing me the power to walk again. It used to be intimidating but I get to meet so many people that would have never spoken to me were I not to stand out from the crowd.
I was asked to describe what the positives and negatives of living with SMA are but it’s been a bit difficult to unpack a life that's all I’ve ever known. SMA is a part of my life like any other and I know I love that life. I wouldn't trade it for anyones. I have a great wife, a great family, a great job and I've seen more parts of the world than I ever imagined I would as a young kid in Poland. I've found a sport I love…and best of all, I'm me, and I'm excited about what my unique set of circumstances, attributes and opportunities, SMA included, allows me to do next.