I was recently interviewed for a documentary about life with SMA, and while interviews are not new to me, nor something I am afraid of, this particular line of questioning was, well, different. The interviewers, in my opinion, sought to provoke anger. The most surprising and frustrating thing of all was how they wanted me to be mad for not being allowed to participate in the clinical drug trial my sister is in because my spine is fused. They were surprised and almost in disbelief when I expressed my indifference. The anger they tried to provoke from me was, in my eyes, an attempt to tear down my wall of “strength and smiles”.
The antonym of strength is weakness. SMA makes me physically weak, physically inept. So why, when given the choice to be emotionally strong or weak, would I chose the latter? My emotional strength, my inability to be wholly rattled by my disability or more simply my decision to smile, may appear cold or superficial to some but it was a choice I made long ago, and one that I’ve stuck with.
SMA and its sweeping power to take lives or take strength pisses me off. But that anger doesn’t consume me. I have SMA, but SMA doesn’t have me. The anger and frustrations that are central to having SMA aren’t at the forefront of my mind one hundred percent of the time, though they may be the subjects of my blog.
Now I hope people understand that though having SMA is frustrating at times, I am able to love my life so fully because I don’t let my anger and frustrations consume me. So thank you all for reading along and for allowing me share a glimpse of my somewhat odd yet somewhat normal life! Until next time!