When you see someone get out of a wheelchair and walk, don’t be alarmed. It’s not a miracle!
In 2015, I went to Disneyland and passed out by the turnstiles. I reassured everyone I was okay, then proceeded to enter the park and faint again, this time on the raft to Tarzan’s Treehouse. I was taken to a sick bay in the Wild West town of Grizzly Gulch, and spent the rest of the day carousing the park in a wheelchair. It was a game-changer.
I can walk. I am fully able to use my legs and feet and twinkle toes. However, it had not dawned on me just how much energy walking had been sucking from me until I was given a Mickey Mouse-themed vessel that empowered me re-channel my spoons into other activities.
Chronic illness patients often talk about “spoons.” “Do you have the spoons for this?” “I’m low on spoons today.” Spoon theory was coined in a 2003 essay by Christine Miserandino, and it explains a currency-type system where every time you exert yourself, you give away one or more spoons. I prefer to think of it like phone battery. Imagine charging your phone all night because you have a big today tomorrow. Your phone battery will last all day and maybe you’ll get home with it at 34%, ready to recharge to 100% for the next day.
Now imagine charging your phone all night, but it’s only at 56% when you wake up. Or it was at 100% when you got up but suddenly dropped to 56% while you were eating breakfast. You go through your day noticing erratic battery drops. You have no idea if you’re going to still have any battery by 5pm and your day ends at 8pm. You sneak a quick charge at work, but it only helps a little. You either need to cancel your evening plans to get home on a dwindling battery or power the through the night, hoping your phone doesn’t die on you.
Not a perfect analogy, but the latter description is the experience of a chronically ill person. Just swap out phone with body and battery with energy, mobility, wherewithal — any of those things that we take for granted when it’s there.