Why Making Goals is Important Despite Having MS
After my first MS attack in 1998 landed me in the hospital for five days of round-the-clock Solumedrol IVs and diagnostic tests, I was sent home with a script for oral steroids and a suspicion of MS. No follow-up appointment, no advice. Although I showed all the signs, the docs made it clear that I’d have to have another attack and another battery of tests before an MS diagnosis could be made. I was told to call them if those symptoms ever came back. “Until then?” I asked. “Carry on with your life as if nothing happened,” was all they said.
As if nothing happened
Although I recovered about 75% of my abilities, I would permanently sport foot drop after walking for 45 minutes and fight heat intolerance and fatigue in general. But the experience changed my psyche forever. It was as though I’d survived an earthquake or a war. The fear, the confusion, living through the whole ordeal burned into my memory for good. Carpe diem, I’d always heard, a clarion call to the young who still exist in that sweet, sticky honey comb space where they haven’t yet shriveled up from the drudgery of being in the adult world. Youth is for making memories that we can reflect back on when we’re old. That must have been from a Kodak commercial I saw long ago. For the times of your life, a plaintive female soprano warbles over an image of a backyard family barbecue. Nobody’s in a wheelchair. Everybody is 20 pounds thinner than the average American, their features alarmingly flawless. The dads have all their hair and moms still sport 22-inch waists despite having given birth to four kids. Considering what food sits on the picnic table it’s likely nobody has heard of Type II diabetes. For the times of your life.
My dreams and goals
Everything that happens in the present will become a memory. Are good memories the only ones worth embracing? Should I live in the now with my guard up, cautiously participating in only Kodak moments so I make only happy memories? I tried that once during a relationship that hid a lot of lies behind cheery civility. That fake cheeriness felt almost like the real thing, a thing I held in memory that was fast becoming ever more distant. A memory I could no longer trust. But no matter. I’ve only really learned about myself through failures, rejections, betrayals, constructive criticism, and the ever-present troll bait. One thing I learned is that I have little control over all the crap that comes my way. But there is one thing nobody can crap on: my dreams and goals. Especially if I keep them to myself.
I’m not the person I once was
Setting goals and dreaming new dreams is just as important as challenging our ever-shrinking brains with Sudoku puzzles. Before I developed MS, I did Sunday New York Times crosswords in ink. I stopped that years ago; the Sunday paper is too expensive and I have trouble concentrating long enough to labor over its dissertation-length articles and ego-killing puzzles. At least, that’s what I tell myself. To be honest, I’ve lost my confidence. I’m not the person I once was.
What lifts me out of my daily routine?
But who is? And what really defines who we are anyway? Some people define themselves by their accomplishments. I define myself by my goals. My goals are guided by my ability to imagine a thing that doesn’t yet exist. My Kim-ness is couched in a future only I can imagine. Imagining a plot synopsis for my yet-to-be-drafted second novel is the one thing that lifts me up and out of the drudgery of my daily routine. A routine that has worn a groove in my soul that gets deeper the more I allow myself to be defined by how weak my legs are whenever I tote a garbage bag to the dumpster. The one thing that MS hasn’t touched is my writing voice and the ways my mind works.
It doesn’t matter if I have weak legs, numb legs or no legs. I don’t need an able body to reach towards the dimmest star in the night sky.
Does your employer provide workplace accommodations due to your MS?