Gather. Discover. Cultivate.
Hi friends! I’ve recently launched a Substack newsletter: Out of Order: Notes on Chronic Illness. It will be where posts on ME/CFS, Long COVID, and chronic illness live. I will continue to share my experiences navigating these conditions in the context of disability justice. The newsletter will also be a place to practice creativity and courage so we can give the beloved future a fighting chance.
Continue reading “A Second Home at Substack”
Half the US reels from this first week of mayhem. A good portion of the rest of the world too. As always, Democratic party leaders are unwilling to make the radical changes necessary to produce a coherent strategy. Grassroots organizers are paralyzed by attacks on multiple fronts at once, scrambling to serve already vulnerable communities now facing direct threats to their existence. And the failure of mass protests over the past decade to sway policy in a more humane direction has left many without a collective mechanism for voicing outrage.
Just as in the first sickening months of His Monstrosity’s first term in office, the goal is to keep us off-balance. To make us so dizzy with fear and confusion that we end up like Oz’s scarecrow: stuffed full of the shredded hopes of 100 million people, stuck in place and pointing in every direction at once.
Continue reading “Chronic Resistance: Notes on Surviving the Horrors”
Right now someone is packing for a research trip to Antarctica. Swimming with dolphins. Having their first dance.
Someone is falling in love on a bridge in Venice. Ziplining off a treetop platform. Spelunking in a cave in near total darkness.
Someone’s life disappears into the shadows of another’s big moment.
When the unit of measure plucked from the shelf, someone always falls short.
Continue reading “The Incredible Shrinking Woman”
Halfway up the road to the lake, the ground caved in. It was our first summer running the YMCA summer camp in the mountains of Colorado. The new culvert system our regional Y had installed at a cost of $900K had not even had its first birthday.
Continue reading “Joint Force: Notes on Recovery Efforts”
The Visible app gives me a 2. Not the lowest score possible but It is a “Back to bed with you, Dear” kind of score. A score of knitted brows and wringing hands. Your body is out of balance today, the app tells me. You may want to plan a quieter day.
So I do. Even though the sun is up and the crepe myrtle blossoms are unfurling in the July heat, I down my morning meds and crawl back under the sheets. Eye mask, earplugs, more sleep. Fractured sleep disturbed by epic action-thriller fever dreams that shake my hold on reality, but sleep nonetheless. What else is there to do?
Continue reading “Know Happy: Notes on Voluntary Confinement”
“Every family should have a wheelchair,” Alan says. That’s what he says too about the walker, crutches, and toilet seat riser left over from medical procedures of yore. He stores all these in his basement closet. “Just in case.”
Continue reading “Ready to Roll: Notes on Mobility Aids (part 1)”
Follow me here: your brain will begin to change as you do.
– Alexandra Horowitz, On Looking: Eleven Walks with Expert Eyes
The gait is an oddity. You scoop now, or maybe swoop. To walk forward, you have to cover distances along the vertical, an axis you’ve rarely considered. It is as if one torn hinge down below popped a hasp hidden along an adjoining edge. The door swings upward now. You must believe in this way of opening. You must be willing to shift the fulcrum and lean against places you thought were solid.
Adaptation reconfigures the concept of self-reliance.
You are unable to chase down your wild one. You find people who can. The children of the neighbors whose names you vaguely remember, they invite you because you invite yourself. Their friends come, chatter and thump, with chocolate glass and athletes’ names stitched onto their backs. Meat hisses and blackens over a grill. Your little man plucks a fallen tree from the ground and hurls it across a blossoming acre of sky. The other one rips a PVC frame from a soccer goal and turns on him. They tear around the side where ropes and fence posts swallow them up. Inside, girls scream. Grease pops, a baby reaches with his crystal mouth for a slice of fruit left on raw wood.
You scale concrete steps and marvel at mechanics which you thought your birthright. Undeserved, as is every blithe entitlement. Fleeting, as is every aspect of the truth you trusted enough to ignore.
Pain is a flavor like coffee gone cold. Good coffee, though. Oil gleaming on jeweled beans. Smoke at the edges.
Your joint is a broken tongue slipping around the memory of speed. This is a small inconvenience. You are grateful in a wholly unexpected way to those who have tripped over this earth in imperfect bodies. All the ones who have scrabbled with impossible latches that bar the way to gardens too narrow anyway, or too terraced. You thank them for every smooth paving stone, every ramp, every handrail. You are ashamed of your earlier blindness, that disability of of the unimpaired.
The lips of those who see your hitch at first pucker with scars. Then they chuckle them loose. “This is just the beginning, you know.” They are your comrades in arms. In hips, ankles, in sciatic nerves. Together with these allies in mortal combat, you watch an enemy front advancing over the horizon. It moves fast. It swells in on your flank.
Defeat is inevitable, a foregone conclusion. You resist nonetheless. You hold it off and clutch at your inch of territory even as it shrinks in your grip.
You lift your arm and ride its arc. It will go too, soon enough. It is here now, though, that crescendo, that cascade. You lift your ears to the buzz (engine, wasp, feathered wings dipping then gone) and let heat squirm against your bare face. This wash and flurry grates awake sinew that in its younger, uncracked state felt barely anything all.
You may return to ignorance. Luck, they say. This could heal without blade, just a dimming of pain, a steady return to familiar physics. You welcome the liberation of your attention.
But you know better now. You know that luck never holds out. Bones will hollow. Fluid will vanish from the eyes and reappear in lungs, in ankles, in tiny bubbles scurrying through veins. Forward motion is a fleeting state. As is independence. As is hubris. Soon you will need bodies stronger than yours to escort you across your days. The same will happen to your children and neighbors, to your heroes, to everyone you’ve ever loved.
Like the shattering of childbirth, this crack and shift will fade. Like childbirth, its footsteps will echo. Its ghosts will walk your body’s locked corridors.
Keep all the hinges oiled.
Hold the keys close.
Image: Crouching Aphrodite (Venus) at the Palazzo Massimo alle Terme (National Roman Museum)
Shannon E. Williams 