SmirkPretty Blog

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?

Continue reading “Know Happy: Notes on Voluntary Confinement” →
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.

Continue reading “Running Dry: Notes on Writing through Brain Fog” →
Adventure, body, disability, Friends, health, long covid

Ready to Roll: Notes on Mobility Aids (part 1)

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Photograph of a white painted shed or barn wall covered in organized, vintage tools all hung and arranged by type.
Photo by Lachlan Donald on Unsplash

“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)” →
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. 

Continue reading “Stop the Music: Notes on Good Enough Care” →
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.

Continue reading “Chronic Illness Storytime: Sick Lit Memoirs” →
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.

Continue reading “5 Answers to 5 Questions You Didn’t Ask” →
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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activism, body, disability, health, long covid

Chronic Illness Storytime: Unrest

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Movie poster for the film Unrest. It shows a woman lying on a white bed with brain monitor cords attached to her head. The poster has movie information at the top, including icons some of the awards that it won.

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” →
body, Brain, disability, health, Learning, long covid

Enough Already: Notes on Sensory Overwhelm (part 2)

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Image source: The Inspiration Room

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)” →
Brain, health, long covid

Too Much: Notes on Sensory Overwhelm (part 1)

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Photo of a an exploding, flashing roman candle and the shower of sparks around it against a dark background
Photo by Jonas Allert on Unsplash

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)” →