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”
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.
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”
Brain fog isn’t an official medical diagnosis; rather, it’s a colloquial term for a range of significant, persistent neurocognitive impairments that cause such symptoms as sluggish thinking, difficulty processing information, forgetfulness, and an inability to focus, pay attention, or concentrate. With Long COVID, the exact combination of brain fog symptoms varies from one person to the next.
– Kathy Katella, “Long COVID Brain Fog: What It Is and How to Manage It,” Yale Medicine News
Brainstorm, zero draft, morning pages, freewrite, stream of consciousness.
It has lots of names. I call mine WordSpring.
WordSpring has been my writing process for as long as I’ve been writing. At least 35 years. All I do is set a time or a number of pages and just let them spill out. The words flow free. My only job is to tap the source and, in the immortal words of Natalie Goldberg, “keep the hand moving.”
Occasionally I come to the spring with a theme in mind. Sometimes it’s just an opening and whatever emerges becomes the beginning of a project. More often than I care to admit, it’s all process and no outcome. Just the flow and whatever is called to the surface.
Continue reading “Running Dry: Notes on Writing through Brain Fog”
To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear—because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need. My own illness story has no destination.
– Meghan O’Rourke, The Invisible Kingdom
Imagine falling into a well, tumbling deeper until you crash down into the ghostly ballroom of a towering manor. You come to in the middle of what appears to be a murder mystery party you definitely did not RSVP to.
Continue reading “Chronic Illness Storytime: Sick Lit Memoirs”
Progressivism is a spectrum; it’s not an ideology following one leader saying one thing. It’s many people who have very wildly diverging opinions about many things. But, as progressives, if we could commit to a general frame of reference that we are about improving the quality of life for a lot more people, we’re about helping working and middle-class people, and we’re about taking care of poor people, we could really make some inroads in political power in this country. But, if we choose to be purists, if we choose to be arguing for a consensus we will never reach, for agreement on every point, it’s never going to happen.―
![[no title: p. 304] 1970 by Tom Phillips born 1937](https://shannonewilliams.org/wp-content/uploads/2019/04/phillips_tom.jpg)
Surely it is not art. She pulls her phone from her pocket and steps to the stage. Her first time. Tapping the screen, she balances it on the ancient music stand. Grips the mic with both hands. Through ums and mumbles, she describes a man who called it love before the girl learned the proper name for abuse.
Surely this is not poetry, nowhere close to art.
Art you know. You saw Gipsy Kings at the Barns and walked Kusama’s Infinity Mirrors at the Hirshhorn. You can recite Mary Oliver’s “Wild Geese” by heart.
You know art.
Surely this falls short. Yet…
In the kitchen now coaxing life from zygote.
Onions thin as viscera, ginger membrane flayed,
a neglected melon split at the exact moment its flesh
matches the scent of the sun.
Disgruntled, Asali Solomon (2015)
Kenya Curtis is growing up in 1970’s Philadelphia with a dad who wants to seed a revolution and a mom who’s working to pay the rent. Her living room is the gathering place for the Seven Days, a collection of tired but dedicated survivors of the Civil Rights movement, fending of complacence and creeping towards middle age. Because she is the kid that celebrates Kwanzaa and can’t eat pepperoni pizza because of the pork, school is a place of derision that borders on shunning.
How to write a poem
is one thing you thought you’d never forget
but after a while even the wobble escapes you.
Wheels warp, refuse to align.
Months of days passing the place you stashed it
before you notice it’s gone.
Stolen? At first it seems so, a ragged hole
the size of your fist
in the door just below the lock.
Shannon E. Williams 