My dear friends, Esther and D, the Little Princess and I went to see my Piano Man at Radio City Music Hall. My flesh and bones and I were having one of our great days—in fact, we’ve been having a fantastic week when it comes to pain—but D (who has lived with Lupus since she was in her teens, and has gathered an intricate bouquet of complications as the years go by) was discretely strolling through pain hell.
The Little Princess and I arrived a wee bit late. We found my Piano Man, Esther and D already waiting for us in front of Radio City. We greeted each other with hugs, laughter (and the Little Princess and I received much teasing over our tardiness).
After my Piano Man left us, to join the orchestra, I examined D’s face. She looked radiant, ready to enjoy the evening… Anyone who doesn’t exactly know her well, or who doesn’t know what severe pain looks like, would have probably thought that all was well. I almost asked D about it when I saw the first long blink, but chose to let her be. Sometimes, all it takes to worsen the pain is for someone to remind us that we are in agony.
We loved the show. My Piano Man was extremely hot and the Rockettes were sparkly.
The Little Princess kept us laughing—she danced in her seat, sang, explained the plot loudly, and when Santa told the audience, “What do you say when Santa tells you Merry Christmas?” she shouted, “I say, hooray!” at the top of her lungs. Esther, D and I roared. Between bursts of laughter, I watched D take a few deep breaths and squeeze the back of the chair in front of her until her hands began to shake. I still said nothing.
My Piano Man met us after the show, took our picture, and we said some quick goodbyes—he had a second show. Esther lives on the other side of the city. So she, too, kissed us goodnight.
As the Little Princess, D and I walked towards the subway, I said to D, “Thanks so much for spending this time with us.”
“Oh, no,” she told me, “thank you! I had the best time.”
“We did, too,” I said, watching as the Little Princess twirled around and giggled at the imaginary camel she walked on a New York City sidewalk… tied at the end of red and gold streamers. “But I know you’re hurting.” I rubbed one of D’s shoulders, ever so slightly and she winced. We laughed, and stopped in front of a closed shop, so that D could change out of her dress shoes.
When D stepped out of her shoes, I grabbed them and put them in her bag. “Thank you”, she said, and those words conveyed the thousand little stories everyone who lives with chronic pain knows.
“No,” I said, “thank you a million times for loving us so much that you are willing to give us one of your precious spoons.”
Then we laughed, delighting in the merry way in which the Little Princess continued to skip and twirl, as she scolded her imaginary camel for “pooping on the sidewalk” and not on stage, where it would have been “so hilarious!”
In the past, I was sure that it would be impossible to explain to healthy people what living with a chronic illness was like. But in her response to “I Shall Not Cry over Dead Flowers”, my dear Emma, mistress of Little Gothic Horrors, introduced me to “The Spoon Theory”.
If you live with a disability or chronic illness that affects almost every aspect of your life, you probably want to read “The Spoon Theory”, by Christine Miserandino. If you are friends with (or a relative of) someone differently-abled or chronically ill (and you wish to know what his or her days might be like), then you should read Miserandino’s article.
“The Spoon Theory” uses, um… spoons *cough* to measure how much a person living with health issues might be able to safely accomplish during a specific day. It stresses the importance of prioritizing, it reminds people in pain to say “No” *even to themselves* when necessary… And in the clearest of ways, it tells those who get to spend time with someone living with pain just how lucky they are.
I feel blessed whenever D hands me her last spoon. Not just because I love her and enjoy our time together… But because I take her company for what it is: a miracle the universe shines into my heart, while chanting into my mind, Look, dear witchy woman, and see!