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”
Tonight you will dream yourself into a highwire act
free of goblins prowling the edges
unraveling the net.
You will wake to winter’s striped sky
last seen when the world was still green.
You will robe your fingers
in silver
gloss your lips
with greeting
free a trickle of light
from the rusted tap
you have to use a wrench
to turn on.
The smallest circle
then the next
circling into a ring
of circles
twirling round
upon round
spiraling themselves
dizzy
giving shape to a fractal
kaleidoscope
tracing an arc
along another turn.
I wonder if you, at the back of your throat,
chew the cud of us.
Flavor gone bland, molars
working to extract some vestigial molecule of nourishment.
Does its bulk retain any memory of sunlight
at the center of the blade?
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”
for the times we ignore the price tag, may we forgive ourselves
He strides up the steps
in his purple velvet coat,
trailing the welcome stink
of burnt sugar
and rosin,
a gait so light even the oldest boards
hold their breath.
He closes the distance
before you clock his game,
pulls a quarter from behind your ear.
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”
Inside this illness, many of us inhabit two opposing states at once: grateful beyond measure for the knights and godmothers and helpful mice in one’s own tale. And burning with white-hot rage on behalf of afflicted siblings punished without end by the failures of our kings and the ones who permit their reign.
You know how to spot the villains the moment they step onto the page. Briar Rose’s wronged fairy, Jack’s giant, an entire genus of jealous stepmothers who would rather kill their husband’s children than compete for scarce resources. All you have to do is look for the most jealous, greedy, power-hungry characters. The ones whose motives make your skin crawl.
You also know from reading these stories that the villain is a straw man. He draws your attention away from where the real threats lurk. The resident miscreant, no matter how vast his appetite, can’t hold a candle to the more dangerous elements driving the plot.
Continue reading “To Spin a Yarn: Notes on Curse and Rescue”
As soon as we come in out of the heat, she heads for the kitchen. First stop is the food bowl in case something new has materialized. Then it’s to the water. She gives it a few good laps then ambles over to collapse on her bed by the balcony doors.
I try to keep her water filled. Sometimes I forget and all that greets her is a rank two-day old puddle, if that. She doesn’t know how to signal it’s time for a refill. It’s up to me to remember to keep track but lately my attention is slippery. These are not my proudest moments, when I can’t recall the last time she had something within reach to drink.
Continue reading “A Blessing of Waters”
Shannon E. Williams 