31 Days of SMA: Life With SMA Type 3

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by Kevin Schaefer |

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Day 3 of 31 Days of SMA⁣⠀ Topic: Things I wish I Learned Sooner⁣⠀ ⠀ This is Brynne’s story ⠀ Disability is what you make of it: Growing up with a disability, I often questioned if I would be able to be independent, hold a job, get married, travel by myself, have a family, go to college. I thought having a disability would somehow undermine the fruition of these life achievements. It wasn’t until I met someone with SMA doing all of the above that I realized I could. In meeting her I realized I was perpetuating the limitations of my disability by choice. In this moment I learned having the wrong perspective surrounding your disability can be just as (if not more) disabling as the physical limitations you experience. ⁣⠀ ⁣⠀ Maintaining a positive outlook: Sartre famously said, “we are our choices.” This means we become who we are by the choices we have made in the past, and we have the power to become someone else by the choices we have before us presently. Victor Frankl would agree in saying that while we have no choice in the situations we were born into, we have the ability to choose how we define our perspective surrounding these situations. So, we can’t control the fact that we have SMA, how others view us, what they say, we DO have a choice in whether we let these dictate our self-perceptions, our abilities, and the limitations and goals we set for ourselves. ⁣⠀ ⁣⠀ It’s easy to spiral into a mindset focussing on how much progressive illness has taken. When this happens, I ask myself, “What has my disability given me, not taken away?”. Has it given you better time management skills, increased resilience, patience, deeper appreciation for life, meaningful relationships? Focus on these things to help nurture a positive outlook. ⁣⠀ ⁣⠀ Involvement: I intentionally avoided the SMA community growing up, as I was trying to avoid the reality of life filled with physical decline and weakness (joke is on me, its still here lol) What this did was isolate me from the support I needed most. I needed a mentor, a role model, someone who was similar that could encourage me into thinking I can experience life despite disability. The only way you will find that is involvement.

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