Tag: chronic illness

activism, Choices, community, Determination, disability, Learning, long covid, Mindfulness, Take Action

Chronic Resistance: Notes on Surviving the Horrors

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Photo by Majestic Lukas on Unsplash

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.

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Choices, disability, Learning, long covid, Music, Poetry

Goblin Polyphonic

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Photo by Santi Bentivegna on Unsplash

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.

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body, Brain, community, Determination, disability, health, long covid, Take Action

Joint Force: Notes on Recovery Efforts

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Photo by Eryk Fudala on Unsplash. Color photo from inside a stone culvert with a creek running trough it, looking out over a green hillside.

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.

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activism, Change, Choices, community, disability, health, long covid, Reading Beyond

To Spin a Yarn: Notes on Curse and Rescue

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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.

Photo by Yevheniia on Unsplash. Picture from inside a barred tower window with jagged edges looking out over a dark, adjacent tower and the countryside below at dusk.

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. 

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body, community, disability, Dogs, health, Living in the Moment, long covid

Know Happy: Notes on Voluntary Confinement

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Color photograph of a fennec fox curled up and sleeping on a brown, sandy surface with its nose tucked into its tail and its ears sticking up.
Photo by Clément ROY on Unsplash

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?

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Brain, disability, Letting Go, long covid, Writing

Running Dry: Notes on Writing through Brain Fog

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Color photo of several rowboats grounded on a dry, brown riverbed with a tiny bit of muddy water nearby.
Photo by Chester Ho on Unsplash

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.

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disability, health, long covid

Stop the Music: Notes on Good Enough Care

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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. 

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disability, health, Learning, long covid, Reading, Writing

Chronic Illness Storytime: Sick Lit Memoirs

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The Authors. Top L-R: Lunden, Mailhot, O’Rourke, Jaouad; Bottom L-R: Foo, Ramey, Henley, Chong

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.

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body, Brain, Career, disability, Home, Living in the Moment, long covid

5 Answers to 5 Questions You Didn’t Ask

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A Day in the Life of Sick and Miss

This last night of 2023 also happens to be my last evening off before returning to work. Three months of medical leave has been the best gift of the year. Because “going out” is no more than a fading memory from a distant land, I’m staying in tonight to answer five questions you haven’t asked yet (but maybe were going to) about Life with the Mystery Sick.

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body, Brain, Letting Go, long covid, Mindfulness

Immune Response

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Color photograph of a plant seedling in dark soil, beginning to open a three green leaves from red stems.
Photo by Daniel Hajdacki on Unsplash

Thank you for protecting us. You were so brave. You did exactly what you needed to do to keep that mess from doing its worst. Considering all of the ways we could have been done in, all of the dangers at the door, it’s really a marvel that you knew just what to do. Your arsenal was stocked and you, skilled at using everything in there. You kept us safe. You have our deepest gratitude.

Now that we’re sitting down here together, we have something else to tell you. It’s important. We need you to hear this. Are you ready?

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