My body and I have always had a bit of an adversarial relationship. Scratch that! I will tell the unadorned truth: I have spent most of my life in an all-out war with my body. There was a time during which I “reclaimed” the word fat and filled my closet with tight-fitting skirts and low-cut blouses that made the most of my push-up-bra-enhanced cleavage. That, however, was the short-lived Battle of Politicized Youth and I was only able to fight it for as long as I did because at that time I still had energy and balance enough to spend long days in uncomfortable underwear and high heels. As has been the case with all the battles in this war, I finally flew the white flag and my body emerged the victor. Just when I became old and wise enough to consider surrender, this body mounted its final (successful) assault and my MS began to progress apace.
Before that, I had it all worked out: I was going to morph into the old woman who wore purple, perhaps even become a member of the Red Hat Society. I was inspired by the fact that I once saw my granddaughter become so captivated by a group of purple-clad women that she picked up a feather that had floated from one of their hats and breathlessly asked if I thought it would be okay for her to approach them and return it. I said, “Of course,” but her awe of them at that moment was so intense that she was finally unable to bring herself to enter their sphere. That’s when I decided that my body and I were going to call a truce, sign a treaty, do whatever it took to live in peaceful coexistence. We wouldn’t necessarily love each other; we would, however, make it appear to little girls that we were the best of friends, having bonded over colorful clothing, feathered hats, and wild costume jewelry.
Of course, there’s no real reason that MS has to foil those plans. When I began using a walker, one of my wonderful students called me her “Femme Sage” and promised to Bedazzle my new equipment. When I progressed to a wheelchair she imagined for me the possibilities for Bedazzling that behemoth. Both of my grandchildren were elated at their good fortune the day I wheeled them on my walker’s seat. These days, I can send them into fits of laughter by turning my chair in circles to express my amusement when a family conversation takes a particularly silly turn. I could, if I so desired, end this war once and for all by embracing my ever-changing body and accepting the version of it offered by the people I love.
Throughout the writing of this post I have tried to envision its logical conclusion. At one point, I was tempted to mold it into a piece about the importance of “accepting” my body’s increasing disability. When I wrote toward that conclusion I had no option but to call “bullshit”; how could I espouse an attitude I am unable to embrace? At another point, I thought I might focus on the fact that if I were to abandon this fight I could devote myself to endeavors that would certainly be more productive than waging a war whose outcome cannot be determined by sheer force of will. That call to action felt as disingenuous as had the call to accept my body. Simply put, though I wanted to “make meaning” of the time I’ve spent at war with my body, I could not bring myself to accomplish that by offering advice I regularly reject—advice that seems to put the onus for “rising above” on those of us who are daily betrayed by the bodies we inhabit.
What is Maya Angelou’s quotation that Oprah Winfrey repeated so often that it became a cliché? “When you know better you do better”? The fact is that I know better than to expend my scant psychological and physical energy battling this body and the disease it harbors. I know better than to struggle against my daily need for rest. I know better than to cycle into negative phases during which I focus on my increasing disabilities and ignore the abilities I retain. I wish I could profess to be the person who does better because she knows better. In my case, MS has meant that knowing what I know at any given moment is about the best I can do. As dissatisfying as it is, this is the only moral I am currently able to force upon this story.