Today, I feel a need for a Multiple Sclerosis rant.
Feeling Sorry for Myself
At the risk of seeming solipsistic, I want to say that this issue’s topic (Power) seems like a cruel joke. I have been furious recently about my lack of power and control over my own body. I am demoralized when I have trouble walking or even standing up straight in church or in my own house. It doesn’t help when well-meaning friends try to celebrate the things I can do well, and have always done well, like writing or even brushing my teeth. After a recent dental exam, my dentist told my husband, Dave, that “Anna’s teeth look great,” as if Dave had anything to do with my dental hygiene! I am not driving, so the experience of disappearing for a while, even to go to the grocery store, or run an errand, is gone. There is no public transportation, and I might not be able to use it even if there were. I have to rely on someone else to drive me to the pool for water aerobics. If I want to meet friends for lunch, they have to drive to my house and pick me up. Even my writing, once a reliable and fairly easy source of inspiration and strength, has become difficult to do by myself. I have trouble typing, so I find myself relying on someone else (an editor or friend) to catch my inevitable errors. Virginia Woolf’s famous statement that in order to write fiction, a woman must have money and a room of her own seems especially relevant now.
Of course, people who know me well will understand how grateful I am to Dave and to everyone else who helps me, from doctors and health professionals to family members and friends. I love having my loud and boisterous son and his other teenage-y friends in the house, sparring verbally, cooking together, playing and singing (loud) music, and chasing each other from room to room. And I am finding strength by writing for Garden Spices and by starting my own blog, “Madwoman in the Wheelchair”, that lets me participate in the ongoing conversation amongst people with Multiple Sclerosis and other chronic illnesses.
Keeping It Real
And yet, writing and reading come with the price of exhaustion. Like many people with MS, I tire easily and have to carefully manage the times when I visit friends and participate in large events such as the recent Pride parade in Birmingham, Alabama. Afternoon naps are no longer a luxury, but are a necessity for my physical health and sanity. I am reminded of the Adrienne Rich’s poem, “Power,” in which Rich considers Marie Curie’s discovery of radium and her subsequent death from exposure to the element that she has isolated and studied. Curie won two Nobel prizes, but her accolades came with a price.
I am not in any way suggesting that my exhaustion is comparable to Curie’s painful life and death, but Rich’s poem led me to think about how any kind of power is exhausting and sometimes even lethal – figuratively if not literally. I will continue to write, but I will do it knowingly, aware that I will have to manage my time more carefully than I did in the past, and living with the reality that writing will make me tired.
Love and peace,
– Anna Lott, PhD
Anna grew up in Alabama, spending her entire childhood in the same house where her parents still live today. Anna is a retired Professor of English and Women’s Studies from the University of North Alabama, where she charmed her loyal and adoring students for almost twenty years until a bad MS exacerbation convinced her that she should start spending her days playing games on her iPad, reading and writing whatever and whenever she feels like it, and watching the birds feed outside her window.