Welcome to March and MS Awareness Month, my friends. Orange, unfortunately, is the color of MS awareness. The only worse choice would have been yellow, and I can’t wear that or orange without looking jaundiced. “Oh, that one must have MS and a liver disease,” people would whisper. “Poor thing.”
Maybe it’s better that the color of MS awareness is one I don’t really care for. That means I won’t be thinking of it while putting on a favorite shirt or necklace. I think about my having MS every day, several times, of course, but there are still moments where the awareness of it hits unexpectedly, sharply, like when I see a picture of my aunt in my Facebook feed and find myself suddenly and unrelentingly in tears. She passed in 2015 because of complications from the disease.
People who have MS are permanently aware of it, of course, as are their loved ones. And thanks to Selma Blair, more people in general are aware of it lately as well. I’ve heard from a few friends since her interview aired, many of them asking about what MS is like for me. I welcome those questions and am always available to answer them, but as Blair pointed out, MS is a “snowflake disease” in that it doesn’t affect any two people exactly the same way. That’s what makes it so difficult for people to understand. Full awareness of MS requires knowledge about of a multitude of symptoms, treatments, approaches, outcomes. The complete picture is almost impossible to capture, even for people who live with it each day.
After the stunningly beautiful images of Blair posing defiantly in her flowy dress at the Vanity Fair party, holding her sleek black cane and looking incredibly powerful, I wasn’t prepared to hear how affected her voice is presently because of spasmodic dysphonia. I cried through Blair’s interview the first time I watched it, feeling her struggle, and then I pulled myself together and watched it again, this time admiring her composure.
Tonight, I’m going to dinner and a play with a dear friend—a sister, really—whose mother has lived with MS since the 1970s. She has provided the kind of support almost no one else can through this transition. We commiserate about well-meaning people who make suggestions about how to deal with the disease, and I laughed when she sent a card before my infusion that said: “How about this: the next non-doctor who thinks they can cure you gets smothered with kale.” Yes, please.
Given that my awareness of MS is at an all-time high, I’m approaching this month from a perspective of increased awareness of and gratitude for the ways people have stepped up for me since this chapter began.
You know, when I think about orange as the cheerful representation of the love and support I’ve received, suddenly it’s not such a bad color after all.