She Blessed Us with Her Last Spoon

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.
Radio City 2015 (1)

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.
Radio City 2015 (2)

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!
Sun through Red Tree

We Have an Obligation to Imagine… and I Do

Yesterday, my Piano Man and I went on our yearly New York Comic Con date. We have the super power of enjoying everything we do together, so we had a blast. My body has been glaring at me since before we left the convention. Experience suggests that recovery will take a day or three… most likely just one, since the meds I started about a month ago are finally working.

I’m sure that at least one person might be thinking, Why would you waste your time at a comic convention when you know that your body will be in agony for days as a result? It’s simple. Like Neil Gaiman suggests, “We have an obligation to imagine.” To imagine, I must do… at least a little. And when the pain gets nasty—and sometimes this happens even if I spend the whole day in bed—I need to have the memory of a lot of doing in order to imagine myself better.

Below, I’ve added a visual account of our day.

My Piano Man and I (and the rest of the horde) waiting for the doors to open…
New York Comic Con 2015, 1

This sign made me giggle (in a sad and frightening sort of way), so I had to share it…
New York Comic Con 2015, 2

Of the few costumes we saw, this was the best one. My Piano Man and I were amazed by her level of dedication—huge heavy hood, massive sword, and the girl’s on stilts!
New York Comic Con 2015, 3

My Rocket Raccoon found his friend Groot in the Comic Con wild…
New York Comic Con 2015, 4

I couldn’t believe the state of the TARDIS! I guess NYC can break the best of us…
New York Comic Con 2015, 5

On our way out, we ran into KITT, from Knight Rider, who was blasting 80’s music…
New York Comic Con 2015, 6

NYC won’t let you get away with something just because you’re famous…KITT got a ticket…
New York Comic Con 2015, 7

…I (and a bunch of other people) thought KITT and his ticket were very cool…
New York Comic Con 2015, 8

The booty…
New York Comic Con 2015, 9

I’m quite taken by my new Neil Gaiman tote and my old wee copy of Grimm’s Ghost Stories… By the way, the other side of the tote has the quote I used as the first part of the title of this post.
New York Comic Con 2015, 10

The fella on the cover of my new GGS must be related to the Crypt Keeper *cough*…
New York Comic Con 2015, 12

Only a terribly evil person would refuse to share the yum, so here is a bookish giveaway: leave a comment to win a copy of Charlene Harris’ Midnight Crossroad, a tote, and a copy of The Rich and the Dead, edited by Nelson DeMille.
New York Comic Con 2015, 13

Rocket and I promise to fight evil…
New York Comic Con 2015, 11

Giveaway Rules, details and stuff…
* I need to be able to contact the winners. If you don’t have a website or social media profile, through which we can interact, then please add your email to your comment. If your name comes up, and I have no way to contact you, I will choose another name.

* You can group all your entries in a single comment—or not… the choice is yours.

* To my Canadian Luvs, before you can claim your prize, I must test your mathematical brilliance by asking you a very obscure question, such as… what’s 13 + .5? Yeah, obscure…

* This giveaway will end on October 20th, 2015, at 10:13 pm, EDT. The winner will be chosen using Random.Org, and announced on October 21st, 2015 (with the WiF 2015 winners).

* This giveaway is open worldwide, excluding any place where prohibited by law.

In case you haven’t entered yet, these giveaways will also be open until Oct 20th:
– “Loving You through the Veil
Shaking It and Twisting It until It Says Yes
– “A Rattle and a Wee Book on Her Grave
– “Love, Death, Memories