Updated: Nov 22, 2020
An essential part of any recovery is acceptance. One member of The Long Covid Kids Support Group shares their story in their own word.
Some friends of mine who have severe chronic illnesses recently introduced me to “Spoon Theory” . This concept was developed by Christine Miserandino when her close friend asked her what it was like to live with lupus. She handed her friend a dozen spoons and explained that each spoon could be used for one task in the day and when they were all gone, she would get no more.
My darling kid and his dad are two hundred and fifteen days into Long Covid and we have begun to count spoons. We never used to count spoons. We had so many spoons spilling out of our pockets - spoons for days! We’d wander about the city, spend hours jumping on trampolines, and dive into a family game of beat saber with very little thought about whether or not we would have the spoons.
Kid dropped most of his spoons in April. We thought at first they were just lost. We had dropped them when Old Man Covid walked in. But we always thought we’d find them again. How could infinity spoons just vanish?
Long Covid stole the spoons and has been giving them back a few at a time like a stingy old miser. It’s day two hundred and fifteen and Kid has a daily budget of fourteen spoons. Each day Long Covid collects a spoon tax for daily activities. We didn’t even realize this tax was being collected until we learned about Spoon Theory.
Thankfully, Kid is now able to track his spoon budget for each day, and decide how best to use them:
Long Covid stole one of my spoons in the night! I didn’t sleep well so that means I only have thirteen spoons today.
Getting out of bed takes one. One whole spoon just to start! (Starting is hard. It used to be a breeze.) Now we have twelve.
Brush teeth, get dressed, get ready for school! Another one gone and now there’s eleven.
Thirty minutes of zoom school takes one spoon. We’ve cut back on classes so the whole day takes eight. Kid skips out on art, group projects and gym. It’s the best we can do. Only three spoons remain!
Just three spoons for monkeying, leaf jumping, and dancing. Just three spoons for family giggles, fort-building and chasing. Just three spoons for wrestling with pups. Just three spoons for reading and dreaming and scheming.
Not nearly enough for a ten-year old Kid.
But it’s more than he had on day 50 when he slept all day. More than he had on day 100 when a one-block walk would leave him crying. More than he had even on day 150 when he jumped on a trampoline for 30 minutes and spent the next week feverish and in pain.
Two hundred and fifteen days into Long Covid, we still have hope that Long Covid will continue to loosen his grip, and that Kid will find more spoons. But until then, we count spoons, and make choices, and appreciate every spoon he has left.
Photo credit Dysautonomia International
By Aarati (Arthi) Kasturirangan
Philadelphia, PA, USA
LongCovidKids.org is a parent and patient-led campaign & support group for parents of children with Long Covid. Our story started with a short film on long-lasting symptoms of Covid in children & are working on The Long Covid Kids Study with PeopleWith