Black Friday, Cyber Monday, the time between the holidays’ fuzzy, earmuffed, festive edges, these are the days when people with MS are cautioned to avoid overexertion and stress from all the festivities and their preparations. For me, these are the last few weeks of the semester, stressful, exhausting: the time when the rest of the semester catches up with my classes, all those readings, films and assignments I put off so we could spend more time with one book or film have nowhere else to go, and deadlines for letters of recommendation loom, not to mention the grading. I dare not think of the holidays. I plow forward, heart thumping on Nuvigil, eyes drooping, and I finally acknowledge fatigue.
I never quite understood MS fatigue. Like so many symptoms, it’s unquantifiable and subjective, eluding communication. My neurologist’s office used to send a form to patients to fill out before each appointment. I never ticked the box next to “fatigue,” because I imagined that it must be much worse than anything daily life throws at me. To be honest, I sometimes assume that if I feel fatigued, I must be lazy. Translation: If I claim fatigue, someone will think I am lazy. It’s only when I feel near collapse or sleep, my feet full of cement, mouth unable to form words, torso leaning to torpor (and hey, anyone interested in backing a Kickstarter project for a metal stand that encircles your body and keeps you upright?), that I stop and admit I am fatigued.
In one of my favorite poems by Marie Howe, “Pain,” she writes about her brother John, whose advanced AIDS is producing waves of pain, but not exactly the “big one” that would necessitate morphine. He says to her,
you know how we’ve been waiting for the big pain to come?
I think it’s here. I think this is it.
I think it’s been here all along.
These lines have been resonating quite a lot with me lately. “I think it’s been here all along.” In his pain he perceived something incredible that has taken me 26 years to realize: That fatigue has indeed been here all along. To me, this state, this tired body and mind, is the norm. Living with MS for my entire adult life, I have no point of reference to understand how life would be without it. Not many, after all, can say in their 30s or 40s that they feel the same way they did at 16.
I think it’s been here all along.
Shortly after my diagnosis, my mother built structures into my life, such as short naps every day after high school, until we figured that I didn’t always need them. I missed taking the SATs because of the swirl of the new diagnosis, fatigue, stress. With no disease-modifying therapy available in the late 1980s, I had a box full of vitamins and supplements. They didn’t make much difference to me and made me feel bloated and tired, but they were all I had—but all I had against what? Back then, people who had MS were turning to beesting therapy, grapeseed oil, and all kinds of diets to try to win the battle. But for me it wasn’t, and isn’t, a battle. If I hated MS, and MS is in my body, then I would hate something in my body with its blurry, numb edges, its droop and drag, its slackened strength, its brain lag, and I would, in essence, hate myself. I don’t want to fight that fight. Instead, I try to listen to my body for the moments MS tells me that I’ve had enough and need rest. My real battle was—and is—with the outside world, the expectations that might be placed on people like me whose lives are slowed by MS. I must fight the urge to try to live up to those expectations, and be aware that my path is a different one—no easy feat.
In college and graduate school I took fewer classes, for instance, and it took longer. I got extensions for projects, but poured myself into them. Nowadays, in my professional life, I am realizing that I need to slow down, too, and teach only one class per semester, because the workload and whirr of too many ideas that come with teaching different subjects to multiple people is overwhelming. I have no idea how people manage it. No idea, because it’s been here all along. I must tend to it.