When Skiffy and Fanty invited me to write a post about what brings me joy, I knew immediately that I needed to write about my wife, Margo.
“Oh great,” you’re thinking. “Another generic, maudlin post about how much somebody loves their spouse.”
Well, not exactly.
See, eight years ago, Margo got really sick.
When the two of us first got together, physical activity was Margo’s life. She was a national-championship-level ultimate frisbee player. She’d recently completed the Pacific Crest Trail, living in the woods for 5 months as she hiked from Mexico to Canada. Our first date was a 6-mile walk around a lake. Girl liked to move.
And then, two years in, something broke. Practically overnight, she went from someone who’d run flat-out for hours at a time to being constantly weak and exhausted. From eating everything to being unable to digest anything. Her muscles melted away as her body literally stopped absorbing nutrition from food. Her immune system crashed.
Nobody could tell us why. There were theories — everything from parasites picked up while trekking in Ecuador to rare cancers — but nothing ever panned out. Neither Western medicine nor alternative therapies helped. She had to drop all her sports, her hiking, her bike commuting. Our weekend walks went from sprawling, 10-mile adventures to 3 miles, to 1, to lying on the couch. She was in constant pain.
Then, this time last year, she crashed harder than ever before, landing us in the emergency room. She stopped being able to walk the few blocks to the train station to go to work. She could barely make it up and down stairs, and if you saw her doing it, you’d think she was a hundred years old. She subsisted on IVs and pre-digested nutrient powder. Even sitting and watching TV sometimes required too much energy.
She eventually stopped losing ground and settled on a tenuous new set point, but we’d seen the cliff, and it was close. After years of specialists and tests, years of being trapped in a body incapable of some of the most basic functions, we had to face the fact that she might, in fact, just slip away entirely at 35 years old, with no one ever knowing why.
So where’s the joy come in? With her miraculous recovery?
I wish.
No, the joy comes from the fact that she’s still here. That we bought a wheelchair, and all her friends painted it up, and we take that fucker everywhere — down trails it was never meant to go on, off-roading in the deserts of the Southwest, bouncing over roots and rocks in the Canadian Rockies or the jungles of Hawaii — anywhere I can push it. The joy comes from seeing her hanging out in her garden or sketching a landscape or talking about Game of Thrones with her friends in front of the fireplace.
Let me stop right here and say this post isn’t going to be some platitude about how pain leads to enlightenment or you should live every day like it’s your last. That’s bullshit — pain is just pain, and living every day like it’s your last is exhausting (not to mention problematic if it’s not actually your last day). And I’m certainly not going to tell you, “Hey, let’s all appreciate that there’s someone out there who has it worse than us,” because while perspective can be useful (I can go for a walk! I don’t hurt all the time!), pain is relative, and even with all of this, Margo and I know we’re still better off than most people on the planet.
The thing I want to share, that I never would have expected, is how much joy there can be in living close to the edge.
As a rule, I’m not great at stopping and appreciating the moment. My brain is always two steps down the road. Margo often reminds me that when I finished my second novel, after a year and a half of work, I walked around the house in a daze for a few minutes… then went back upstairs and started on the third.
Yet living with the specter of chronic illness means that while there’s danger around every corner, there’s also joy. When you can only walk a few blocks each day, being able to go 10% farther is a game changer. Any day she’s in less pain is a huge coup. And when she’s having a run of good days, it’s like I won the lottery. The other thing it’s taught me is that joy isn’t passive. It’s not something that happens to us — it’s participatory. It’s active resistance against an unfair world, a weapon we can hold up and say, “Fuck you, world — you can be as shitty as you want, but right now this tea smells fucking awesome, and you can’t take that away from me.”
Which isn’t to say joy is a choice. Depression is real, and sadness is often the only reasonable response to a terrible situation. But for me, joy does require choice — a determination to seize the good moments and burn them into my memory. Because all of us are going to face some terrible shit at some point, nobody’s getting out of this alive, etcetera etcetera. But every beautiful moment that we stop and appreciate, each point of joy, is a victory. A tiny flag we get to plant in the ground.
If you ask me about 2017, I can tell you lots of cool stuff. I got to head up the Starfinder Roleplaying Game, which had a massively successful launch. I got to write comics and video games and quit my day job to write full time. I got to go to South Africa as a Guest of Honor at ICON. Those were all fun and exciting, no question.
But you want to talk about joy?
Last weekend, I got to push my wife’s wheelchair on a trail through a frozen marsh, ice cracking under the wheels. I got to make her laugh with my accidentally phallic new knit hat, the chode chapeaux. I got to stand with her on a frosted bridge and look out at the naked trees and trickling stream, and talk about trips we want to take, and which of our friends are going to have babies, and things of no particular importance.
And it was beautiful.
James L. Sutter is a co-creator of the Pathfinder and Starfinder roleplaying games, and was the original Creative Director of Starfinder and the Executive Editor of the Pathfinder Tales novel line. He’s the author of the novels Death’s Heretic and The Redemption Engine, as well as a wealth of award-wining tabletop gaming material, comics, video games, and short stories. For more information, visit jameslsutter.com or follow him on Twitter at @jameslsutter.
