I swore I would never write a blog. I already talk too much and am sick of hearing about my own boring problems from my big boring mouth. But maybe in writing about my experience living with MS I won’t need to talk so much and I can use my verbal blabbing powers for more interesting pursuits (like celebrity gossip and auctioneer imitations). Because on the list of my Personal Disease Anxieties, torturing everyone with endless tales of MS woe is right up there with my fear of spiders and my inability to safely wear flip-flops.
I believe in living with MS. Like, really living. I would love to be the Gwyneth of having MS. I want to learn how to consciously uncouple from MS but also where to find the most bad ass cane and then determine whether simultaneously wearing a bowler hat looks cool or crazy, all while eating locally sourced organic crudités and sleeping in my perfectly feng shue’d bedroom.
You might find this blog glib or trivial and if so, good. MS has A LOT of serious information and bad press out there. We already know this sucks but if we scratch a bit deeper, perhaps we can find a little humour or the teeniest bit of levity in this absurd situation.
Recently I was asked how much I want to be an advocate for this shit show and I groaned. None of us applied for the job. We didn’t go to school for this. Nobody grows up wanting to be the spokesperson for a crappy disease, obvi. So, I won’t pretend to be an advocate, just one story. Because even with what feels like an all consuming disease, life is about more than just one thing.