Twenty (Thousand) Questions
(Photo credit: Blake Knapp, Wray, Colorado, 2016)
A few days ago, I asked a friend, “Hey, if you can guess where this photo was taken, I’ll give you some candy!” I knew that he out of all my friends would know, despite never having lived there, and I was not disappointed. I wasn’t even surprised when everyone I asked from the area joked about not knowing. “I have no idea!” and “Hmmm… I skimmed my random windmill library and didn’t see this one.”
“Y’all have those now?” I replied.
But it wasn’t about knowing the answer immediately with him: I knew he would ask the right questions to find out (although given the location’s history, it would not have surprised me, either, had he known).
“Is it within 1.25 miles of a paved highway?” he started with.
“Yes.”
It took a few more than the twenty allotted questions, but he did eventually get the answer. It’s a place I’m homesick for nearly every day lately, certainly not a twist I saw coming in April 1992 when we moved to the area. I grew up in the Ozarks, chasing lightning bugs every summer night and plucking honeysuckle blooms every summer day. I lived for Girl Scout camp, which is ironically hilarious if you know my story now. Going from steep, rolling hills thick with trees and blackberries to the vast rolling plains was a difficult adjustment, one I did not like or want at first.
I begrudgingly went with my mother to this spot one late spring day, where the gaillardia heavily dotted the green hills with their bright red and saffron blooms. It was the very first thing I liked – no, loved – about my new home. I started seeing beauty in things that were entirely new to me, things that were uncomfortable and scary. Dangerous even. Author Dayton Duncan once said, “You feel as though the wind can blow you and do at will with you what it pleases.” I saw my first tornado that summer, but even in the absence of the violent 150 mile per hour winds, the daily winds of 20 mph still remind you just how small you are on this planet.
I was used to ordering pizzas on a Friday night and having them delivered, going to the mall, riding my bike from one end of Joplin to the other for hours. None of that was an option, at least a safe option in the case of the bike, in Johnson, Kansas.
I had to relearn life in a new reality.
As I laughed with my friend this week, offering clues and answering questions, it occurred to me: it’s the same mental framework that has helped me in navigating long COVIDPersistent and new symptoms following recovery from acute COVID-19. More and the grief that comes with it. It wasn’t that my friend knew: I knew that he, much like the best doctors I’ve seen, knew what questions to ask – and we can thank years of relentless patient advocacy for that. In a world of 400 million people with long COVIDPersistent and new symptoms following recovery from acute COVID-19. More by 2024 estimates (https://www.nature.com/articles/s41591-024-03173-6), we’ve narrowed the questions to a better starting point.
Do we have a very long way to go? Obviously and absolutely. As friend and fellow advocate Marie Follayttar said last year, “We know we need to teach everyone how to include us.” (https://www.motherjones.com/politics/2025/04/hands-off-virtual-zooms-disability-covid/) That inclusion has many faces and necessitates prevention, particularly airborne precautionsSpecial infection control practices to prevent the spread of airborne diseases.. We are begging you to take what measures you can not to join our ranks. Repeat infections do damage each time, and the toll is heavy. (https://thetyee.ca/Analysis/2025/10/31/Physicist-COVID-Seriously-Enough/)
Are we down to just 20 questions? No. But we have narrowed the gap.
Each new illness begins with a group of patient advocates macheteing a path through the jungle, each wave making it easier for the next, one question at a time.
And I’ll give you some candy, too (or something?) if you can guess where this photo was taken.
Photo by Amanda Finley, somewhere in Kansas, 2010
