I want to justify myself.
I want to scream because I shouldn’t have to justify myself.
Instead, I wait for lobbies to empty or slip into elevators right before they close. It’s easier than dealing with stares and side glances. The slim slivers of judgment, thin as a fingernail moon. She should really take the stairs, I imagine them saying, their advice ripped from the slick pages of Men’s Fitness and Shape.
How do I explain it? How do I tell them that there’s a difference between the exhaustion they feel after a long week and “multiple sclerosis (MS) fatigue?” Do they want to know about the dull stiffness that falls over me like a heavy woolen blanket? Do they care that some weeks the malaise of mind and body knocks me flat? I wish they knew about the hurt that radiates from bones and the tingling in the bottom of my feet, MS’s little calling card — the one that reminds me that, no matter how good I feel, the assassin in my spine hasn’t gone anywhere in the 12 years since I was diagnosed.
It’s difficult to help people who don’t have a chronic illness understand what life is like with one. Their bodies are still allies after all, not enemies. They’ve never been betrayed by their own immune system. But for the ones who want to learn, I tell them, “It’s a lot like ‘Mortal Kombat.’”
Gen Xers, those of us who spent our tender, nascent years in arcades and in front of game consoles, get the joke immediately. Younger folks usually do too, but there are a few who stare at me, needing further explanation. “I have only so much energy to use each day, and I have to decide wisely where to spend it,” I say. “It’s like watching the health bar on a fighting game.”
For those of you who never sacrificed your allowance, quarter by precious quarter, to the voracious belly of a coin-op machine, “Mortal Kombat” was the consummation of all things gaming. With its five-button control scheme and blood-soaked finishing moves, it was vital to those of us who prowled the mall in the late ’80s and early ’90s. A way for the less athletically inclined to show dominance and carve out a place in a social hierarchy of our own design.
Each Saturday, we’d line quarters up on the lip of the screen, our initials inscribed on each with a black Sharpie stowed behind the machine. (Currency defacement laws be damned. This was serious business.) Then — like crocodiles — we’d wait, killing time on other, lesser games, until our coins moved to the front of the queue. And for a few precious minutes, whether we were Liu Kang, Raiden, Scorpion, or Sonya Blade, we would curse, thrash, and combo ourselves into a frenzy, all the while keeping our eyes on that precious red and green health bar that decided whether we were fodder for another fatality or had won the round.
Today, it’s not roundhouse kicks or lightning bolts that reduce my life force to zilch. More mundane tasks are usually to blame.
Running to finish a project on time sucks a little away. Walking across a parking lot baking in the Georgia sun costs me some, too. Long days. Waiting in line. Poor sleep. Stress. They all exact a price. For many years, I could run myself ragged and recharge at home, but these days I need to still be in the green when I cross the threshold of Casa de Hughes. Why? I have a husband and two precocious boys we’re adopting from the foster care system to take care of. It’s a second full-time job, and it’s just as demanding (if not more so) than the one where I earn my cheddar each month.
If skipping the stairs means I’ll still have the energy to cook a decent meal or play outside with them, so be it. A few stares are worth it if I still feel like myself at day’s end.
So yeah, I take the elevator. And no, I’m not sorry about it. It’s not a game. It’s my life.
And I’m going to win.