I haven’t been purposefully absent and uninteresting on the internet, I swear. <—-(I was interviewed)
I’m digging keeping busy — every day is full of challenges, whether awful or hilarious or tedious or joyful. They are challenges both of life with MS and of living within the human condition; it’s only fair if you entertain one, you do so in equitable kind with the other.
I am thrilled to be working with NAMI Mid-Carolina again this year on their Minds on Main campaign. If you live in Columbia, SC you may see this poster (right), and soon a billboard near downtown!
Then as icing on the gluten-free cake, I was honored to speak at the University of South Carolina’s CreedX conference with fellow members of Yoga for Everyone on the topic of dignity.
As someone who barely remembers any other “normal,” I spoke about how when my disease symptoms began presenting in middle school, I erred on the optimistic side by learning how to incorporate comedy into my clumsiness. I never felt dignity was something that would be afforded to an overweight, clumsy teenager so I found a way to make people laugh. Chris Farley was one of my earliest mentors in this pursuit — he was overweight and used clumsiness to his advantage. People weren’t uncomfortable around a funny fat guy.
It wasn’t until I began doing yoga that I began seeing myself — my body — differently. Yoga for Everyone is designed for people with disabilities because our physical needs are often different than the able-bodied. I tried regular yoga classes for a while and felt disheartened by not being able to keep up. Yoga, after all, is about making your body change directions. Changing directions is not something I’m very good at doing. YFE offers me a chair, sandbags, and trained volunteers. Sometimes I’m just fine taking class unassisted, but on the days I’m barely cognizant I know I’ll feel better by the end of class and that I am safe.
The last several weeks have seen days where symptoms vacillate within their own time frames. It’s normal now to altogether lose the ability to speak if I spend too much time upright, it’s normal for dizziness to try to commandeer the day, it’s normal to lose sensation in my [feet/legs/hands/lips/mouth], it’s normal for a beautiful day to be too hot, it’s normal to begin choking at random times without food or liquid around, it’s normal to submit to overwhelming fatigue (then the cruel juxtaposition of overwhelming fatigue with a neurogenic bladder!). My Livedo Reticularis reappears every afternoon (and I am still a Google Image search result for “Livedo Reticularis”) but I’ve got no idea what that even means.
I could spend all of my time navel-gazing about that exhaustive but incomplete list of ills, but then I’d miss out on something else that might be more worth my time.
I mean, just scroll back up to the top of this post, reread, and try to tell me I am anything but lucky.