Working remotely can be terribly lonely, but it does have advantages. Twelve years into my MS diagnosis and eleven into my dream job managing events at a beautiful library in DC, I quit when even the huge accommodations made for me weren’t enough for me to feel like I was contributing like I wanted. When the opportunity to work at Cultivating Leadership arose, I jumped at it–here was a chance to work in a community of brilliant people scattered across the globe who would never have to see me walk awkwardly across a room or lift an overfull non-sippy cup to my mouth! I’d never worry about asking too much of my coworkers again, because the sort of help I usually require is proximity-dependent. Most of my colleagues know me primarily from the shoulders up, and thanks to genetics and tremor-quelling Botox, I look pretty damn good from the shoulders up.
In the beforetimes, our ever-expanding group of colleagues met twice a year for three days, and I, with each meeting, got better at asking for assistance—sometimes even without my usual preambles of “can I trouble you to” and “I hate to be a bother but”. Our last gathering was in New Zealand in 2020. Neal, my usual travel buddy, wasn’t available, so with some trepidation I decided to go it alone. A friend gave me an upgrade to economy plus, which meant hot towels after take off followed by the unlikely pairing of the movie Good Boys and a glass (a proper glass! on a plane!) of Prosecco. Economy plus didn’t help me sleep on the long journey, but extra attentive flight attendants and leg room went a long way towards easing my body and mind.
With good planning, fastener-free bras, and a lot of help from my friends, I achieved something like independence that week. Sure, I ended up stranded and in tears in my room one morning due to crossed wires about who was rolling me to breakfast, but that was a tiny price to pay for dancing with the people I work with and lying on my back staring at the most glorious night sky I’ve ever seen.
Towards the end of the second day the group did an exercise where you mill around the room and then stop whomever you’re moved to compliment. I announced that I would sit still and flag people down/let them come to me, which allowed me to participate without exhausting myself. It’s a beautiful experience, sharing moments of honest, loving feedback. I soaked it in as people said things like “I’m just amazed by you.” “Your attitude is beautiful.” “You work so hard just to be here.” I’ve heard this sort of feedback before, often in response to this very blog. And I’ve always enjoyed it. So why did I find myself in tears during the debrief?
Each individual compliment felt so good, but, when I went up to the balcony and looked at them as a whole, I saw that almost everyone that spoke to me explicitly mentioned my disability. Those that didn’t still had an undercurrent of perceived bravery and inspiration. And while I balk at those attributes even here in this blog, they make sense. I write about my disease; people respond to my disease. In person, though, I hope that people see more than the wobbles, the hand tremors, and the fatigue. I want my sense of humor to stand on its own, not be seen in the face of hardship. It sometimes feels like people are inspired by me just because I get out of bed in the morning and spend only a small fraction of my time railing at the universe for dealing me a shitty hand.
I coach a young man who has cerebral palsy. He’s fifteen, ambitious as hell, and more committed to enjoying life than anyone I know. I first met him at another work conference where I was struck by his joy on the dance floor. I initially sat on the sidelines, giving in to the occasional shoulder shimmy but otherwise reluctant to do more lest I look less than graceful. This kid’s movements weren’t graceful per se, but he was still a great dancer. Watching him enjoying the music and having a ball inspired me to grab a chair for support and join in.
Afterward I told his dad that I’d never understood others’ calling me inspirational until that night. I felt sheepish saying it. He was just a kid dancing, after all. What is inspiring about that? Still, as someone still finding my way to being my full self within my physical limitations, seeing someone who is also limited be so fully himself gave me the courage to be a new, less bashful me at least for one night.
I have no doubt that every one of my colleagues sees me as much more than my limitations, but it’s a fact that they cannot help but see those limitations when they look at me. Hell, if they didn’t they wouldn’t be seeing me fully. I recently heard a man who is Black and gay observe that he doesn’t want people to focus on his minority statuses but also acknowledges that he is, in fact, a unicorn who brings magic to the party due to his unique perspective and experiences. So I continue to stumble forward living into the paradox of being a regular gal and a unicorn, both mired in and more than my disease and disability.
Dakari, my awesome client, has a YouTube channel that gives you a glimpse into his life. Check it out!
In addition to writing about MS, I sometimes raise money to support organizations that fight it. It’s Walk MS season now, and I welcome gifts of all sizes here.