Gather. Discover. Cultivate.
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”
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”
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)”
Stop the dancing/ We’ll share the whole pie/ The night sky/ And we can share the particles
– Cosmo Sheldrake, “Stop the Music”
If reading chronic illness memoirs has taught me anything, it’s that the surest way to get on a doctor’s bad side is to show up with a condition that doesn’t respond to treatment.
This is why I was so happy to find the Good Doctor.
This Good Doctor is a neurologist, a specialist in my HMO. When I first came to see her last year, she recognized I was talking about Long COVID without needing me to lead her to it. She ordered an MRI when no one else would, had me do cognitive testing, and got me into speech therapy. She’s one of the few specialists who has not let the treatment wasteland surrounding this illness scare her away from trying stuff.
Up until meeting her, chasing care was a game of musical chairs. The song comes on and there’s no choice but to get up and start scurrying for another place to land.
Continue reading “Stop the Music: Notes on Good Enough Care”
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”
You have to be able to hold two things in your head. This illness destroyed my life. But what it showed me, I could never give that back.
Jennifer Brea, Unrest
Please watch this film. It’s the story you didn’t know you needed. If you want to understand what Long COVID is about, all the articles and essays in the world won’t get you as far as Unrest. No matter that it came out in 2017 before the pandemic. The chronic illnesses that can ravage a body (and a population) after an infection have been around as long as people have.
Continue reading “Chronic Illness Storytime: Unrest”
Why is it not enough to just be a gas station? Why does it also insist on being an entertainment platform, an advertising space, and a point of sale? All I’m asking from the Shell station is a fill-up on my little Prius. But as I stand there, pump in hand, the doors to the convenience store scream with images of Lottery jackpot numbers, cryptocurrency, Marlboros, and every flavor of beverage. Then, as soon as I’ve activated the pump, an upbeat voice starts speaking to me. About what now? The latest fashions on the red carpet? Yes, right at eye level, an entertainment “news”cast video selling more more more. More products, shows, celebrities, a car wash, and an upgrade to premium gas.
Enough already!
Continue reading “Enough Already: Notes on Sensory Overwhelm (part 2)”
Last weekend, I attended afternoon tea. One of my girlfriends made a reservation at a fancy-pants tea shop in Old Town Alexandria for six of us a few months back. I was determined to go despite… well, everything.
For two days leading up to this event, I rested as much as possible. I also cleared the schedule for two days after for recovery. It was going to be taxing but totally worth it. Right?
Continue reading “Too Much: Notes on Sensory Overwhelm (part 1)”
Shannon E. Williams 