I’ll admit it: Contrary to my usual positive, inquisitive approach to multiple sclerosis, I cried last December when my MS symptoms flared. I cried long and hard.
I remember returning home from work, my left leg stiff and weak, stride slowed, with nobody home but the dog and a very demanding cat, and it just poured out of me, the kind of sobbing thrust from the gut, deep and low. It kept coming and coming. I let it. I cried because nobody could hear me. I cried because I felt I hadn’t appreciated walking enough when I had the ability. I cried because I felt responsible for all of it.
“You did this to yourself. You don’t take care of yourself, and look what happens. Hello, slowness.”
I hadn’t eaten, had slept very little, and had stayed at work too long with more to catch up on later, which would now take longer to do because my gait was slower. My graceful and capable stride, recently loosened with a muscle relaxant, now dragged. If this pharmaceutical key to walking smoothly through an entire semester wasn’t enough to help me walk on this particular day, then I was certain there was little hope of moving swiftly or evenly again for a long time.
In essence, I was crying about what most people cry about: Losing the past and facing an uncertain future. Unless you’re a baby, and in that case you’re probably hungry, tired, or need your diaper changed. Wait — I was hungry. I was tired. And though incontinence was not a problem on this particular occasion, I do recall how I’d cried when I couldn’t make it to the toilet in time, the shame I felt for my body forgetting its potty training. Maybe I was just cranky. Maybe I was being a baby.
And so goes another turn of the Wheel o’ Blame: My fault for the flare-up, my fault for crying about it because I’m just a big baby. I deserve it. This, as I usually cover in my Medicine and Society classes, is a classic example of a cycle of patient guilt, blame, and shame, and I was doing it to myself. I should know better. Shame on me! Oh dear, there I go again. And I’ve nearly used up my lifetime allowance of exclamation points.
It actually felt good to cry. When my husband came home, he listened to me, held me, and made us some tea. I let him take care of me, and also challenged him to help with travel plans I needed to arrange so we could see my parents for the holidays.
In the coming days, the kink in my stride turned out to be just that — a little wrinkle in a vast fabric, and my faster stride eventually returned. I won’t claim responsibility for that, though. Sure, I rested more and made lists and read drafts of student papers and plays and helped students and graded all the assignments and chased down assignments I couldn’t find and answered questions via email — all from the comfort of my own home and sleep pattern — but it’s really luck that pulled me through.
This was perhaps best demonstrated by the pink-eye I developed right before the holidays. I was not taking exceptionally good care of myself, and was clearly run down. Although, come to think of it, I now appear to be blaming myself for pink-eye. Well done, twice in one essay, Laurie! Take a bow. You are an exemplary patient and a walking contradiction.
I indeed kept walking, slowly at first, getting by for whatever reason and despite whatever reason, blessed to be able to walk and stand and grasp objects in hand and concepts in mind. For a while, my body had slowed, maybe telling me something, maybe not. Maybe it knew there were better days ahead.
Breaking the cycle of exclusion: Embracing cultural competence in physical activity research for people with MS
Cultural competence in research involves considering the culture and diversity of a population.
An MS diagnosis in college didn’t stop Téa from cheering for the NFL.