Rolling for Initiative
The question of whether MS folks are ‘warriors’ is a controversy I’ve largely ignored. We’re not embattled, we’re not in a brave fight, we’re just trying to live our lives, and I appreciate that resistance to the ‘warrior’ moniker.
Yet I feel like I’m fighting.
But I’m not fighting MS. MS isn’t something I can fight, it doesn’t have a form, there are no targets, and the medical weapons we deploy aren’t really mine to wield. Something I’m constantly reminded of is how little I can really do; I exercise, for sure, and I eat well, keep my weight under control, and I do whatever my Dr orders. But put me in a ring with this thing and there’s really nothing to punch.
In fact, the idea of fighting MS is a bit weird, because MS is largely a friendly fire issue. My own little troops are mistaking key infrastructure for enemy incursions and happily carpet-bombing the highways of my brain and spinal cord. In that sense, if I am fighting something, really I’m fighting myself.
And that’s essentially my problem with the concept of gearing up for a fight because this battle is unlike predator, I can cake myself in as much mud as I like but my own immune system will still be able to see me, and now I need a shower. It is more like alien vs predator, whoever wins, I still lose, because if we completely batter my troops then they can’t also fight the real enemies that do from time to time present themselves. So we end up in this strange balancing act, perpetually in dialogue with my immune system, wanting it on the ropes but never on the mat; laughable, really, less Rocky and more Bullwinkle. Recently, though, I’ve been considering whether what I’m fighting isn’t MS at all.
Maybe I’m not fighting against anything, but rather for something.
MS is a disease of stacking debuffs, of barriers placed between me and the people and activities I love. Running D&D is harder if I get fatigued, playing video games is tricky if I can’t feel my hands well, and eating dinner with friends is tough if I can’t get my wheelchair up the steps to the bathroom. Yet these barriers can be the targets of my problem-solving, they’re the enemy in a battle of wits as I find new and inventive ways to overcome them.
I’m getting good at this encounter with disability, using giant screens in VR, stationarily cycling for exercise, getting yoked in my wheelchair, and learning to get up off the ground when I’m wobbly - all opportunities for me to overcome each new barrier to get back to something I find important.
I’m also not alone in this fight. Like with any good encounter, I have the best allies. Bill, the paladin, noble and stoic; Caz, the rogue, sneaking acts of kindness, taking on responsibilities without a hint of fanfare to make things easier for me; Toogs, the sorcerer, clever and creative, helping me build new ways to achieve old ends; Smudge, the bard, our dungeon master and constant companion; Tinman, the artificer, can build anything with as keen a mind as hands; Xan and Karin, the wizards, cautious, intelligent, and constantly thinking. I have some truly wonderful party members to fight alongside.
So when MS approaches and places a new barrier before me. I work out what is important and if that barrier stands between me and that person or activity I look to my allies and, together…