Allow me to begin this column by traveling back in time to the days of middle school mathematics. Now, my memory may not serve me as well as it did during my school days (I’ll blame it on “old” age), but I do particularly remember sitting in class learning about different terms to use in statistics: mean, median, and average.
Mean and average can be used interchangeably whereas the median is known as the middle point of the numbers or data you’re working with. However, in every sample of data are these little guys called “outliers.” The outliers always skew the results. They never quite fit the mold of the rest of the data and always make you scratch your head as to how they turn up there — completely different from the rest — in the first place.
My life with SMA feels a lot like those outliers we learned about in middle school. Aside from not reaching standard milestones as an infant, I never quite fit the traditional definition of SMA type 1. In fact, if you look at my medical records, many of them read “SMA I/II,” so I often make up my own prognosis and tell others I have type one and a half. It beats having to dive deep into my medical history and explain my disease on a more scientifically in-depth level.
Just recently, I was having a conversation with my surgeon, who performs my lumbar punctures on Spinraza injection days. At one point in our conversation, he asked, “Well, what do you do when you turn purple?”
For a moment, I wasn’t sure how to respond. I looked at my mom then back at him and hesitantly explained how that has never happened before. I’ve never stopped breathing out of the blue. I’ve never choked on food to the point where it blocked my airway. And, well, I’ve never turned purple. Was that not normal?
Because of how unique my life with SMA has been, this particular doctor has referred to me, albeit affectionately, as his spotted zebra. Even so, he raised his eyebrows in disbelief and admitted he found it hard to believe. I then quickly reminded him who he was speaking with, and we both shared a good laugh.
Although this was just one small example in my long outstanding history of stumping medical professionals, it further proves my theory that life with SMA feels a lot like those little outliers we were taught back in school. I have yet to decide whether or not this is a good or bad statement of fact, but I do know one thing is for sure: It certainly makes life interesting.
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