Contrary to popular belief, I personally believe that being disabled isn’t the worst thing possible, and it’s certainly not the worst thing about my life. Having SMA is not a walk in the park, but it’s not entirely miserable either. Here are some things that living with SMA has taught me, and since SMA comes in many different forms, this is from my personal experience.
Having SMA means there are going to be losses along with the gains. This is just a fact I have learned to accept; however, I do push past the boundaries of what I can and cannot do. There are some things I previously was unable to do (e.g., putting a soda in a freezer that’s hard to reach), and once I try with some extra effort and creativity, it becomes possible! There are definitely things I cannot do, but it’s important to celebrate and focus on the victories, no matter how small they are.
Life with SMA doesn’t look absurdly different from someone without SMA. I need help with physical tasks, but I do many of the same things that able-bodied individuals do on a daily basis. I have a job, drive myself around, meet up with friends, play soccer, volunteer, and so much more. Do some of these things require extra energy and planning? Absolutely. I don’t let that stop me from living my life though.
Humor facilitates the process of developing resilience. Besides my relationship with God and power soccer, the biggest thing that helped me embrace my disability was telling jokes. SMA can be tough sometimes, and making fun of a tough situation helps shift the perspective from dreary to hopeful and humorous. Some people are appalled at my wheelchair jokes, but they help me through life.
I wouldn’t have been able to cope with SMA without power soccer. I recommend to people who find out about a diagnosis to immerse themselves into a coping activity that helps them feel 100% like themselves and where they can interact with others who relate, and that’s what power soccer is. Not only do I get to be involved in a competitive activity that has some level of aggression, energy, and skill, but I have met individuals around the world who are also in wheelchairs and it’s like a second family.
Every day is a new journey, and SMA differs day to day with how much strength it gives me. Although SMA has taught me perseverance, creativity, and how to have a unique sense of humor, I am still learning things constantly. I love to advocate what SMA continues to teach me as I find new ways to accomplish things. Happy SMA awareness month!