Hello dear ones,
Have you heard of the term dynamic disability?
Dynamic disability refers to a disability or condition that fluctuates in severity. You may have heard someone with chronic illness say they have good days & bad days. Personally, even on good days, I do not operate with the ease I did before I got sick. Even on good days, I am in a body altered by dysfunction. But there is a big difference between the good days & bad days for me. To complicate matters, some days are both good & bad symptom-wise.
On a good day, I may be able to walk at the park using my bubblegum pink rollator, taking breaks to rest & hydrate. On a good day, I still may need to use a wheelchair to cover longer distances & durations of activity, such as grocery shopping, but I can turn the volume up louder on the car stereo.
Last week, I went swimming three times. This week I was unable to swim, even once, firstly due to chronic migraine & secondly due to a surprise bout of Benign Paroxysmal Positional Vertigo (BPPV), which has me feeling a bit like I’m adrift on choppy water, even though I’m very much on dry land.
On Friday night, because I was out of migraine medicine & could not calm the pain & also because I was so dizzy, I laid my head on my husband’s chest & sobbed like a snotty little kid. I do not believe in toxic positivity that tells us to sweep our discomfort under the rug, but I very much believe in the healing nature of gratitude & abundance. I use these tools often & they bolster me almost as much as the mobility aids I use to move through the world.
But sometimes, enough is enough. Sometimes, cut the shit. The pain & discomfort of a week of bad days is overwhelming & I just have to cry.
Sometimes, I don’t realize just how bravely I’ve been soldiering through until I glimpse myself through the eyes of someone who loves me, like Matt seeing me in another migraine attack yesterday & saying, “It’s been a rough week, huh?” or my sister Tammy, as I crawled into her car with an ice hat on my head to go get some coffee with her today, her sympathetic voice, “Oh, sweet.”
Who, me? I think. Having not showered in days, wearing my pajama top, which was a non-pajama top on the first day I wore it –whenever that was, & yesterday’s mascara that I donned exclusively for the purpose of “fake it till ya make it.” You may have surmised that I, in fact, did not make it. Although I made it to this moment, which isn’t nothing.
Last night, I couldn’t manage to stand over the sink & lean down to wash my face, so I used a cleansing wipe & a cool washcloth instead.
Reclining with vertigo is brutal, so I made sure I had everything I needed when I climbed into bed, because I knew I didn’t have the stamina to get up again. I couldn’t bear one more drop of pain as I leaned back & covered my face with an ice pack, the room spun until it didn’t, & I listened to an audiobook until I managed to doze off in the darkness, blessedly, even before Matt came in to check on me.
I woke up 11 hours later. Grateful that the serum of sleep worked its magic & lessened my aching, I hissed like a snake into the sunlight of my strange & precious world, which stings daily with the promise of pain & pleasure.
What a sharp, sweet gift that it’s mine.
Until next week,
Annie
Casorati, Felice. Dreaming of Pomegranates. 1913.
Annie-gram 6: Tide