In the summer of 2008, at the age of 36 and shortly after I’d embarked on a Masters in Library and Information Science in the hopes of a second-half-of-life career as some species of librarian, I experienced my first attack of Relapsing-Remitting Multiple Sclerosis. I didn’t know it then, though the way it crippled my tongue and my brain and my legs and sent the world into a perpetual spin sure as hell sounded like symptoms I’d read about somewhere before…
It took me two more years to be diagnosed, and in October of 2010 my personal universe collapsed and began to turn back in on itself. A decade later, after cutting bait on library school (I like to call myself a Stealth Librarian), a certain amount of therapy, learning to accept the compassion of friends and family, 3 different “disease modifying therapies”, and what feels like a hundred MRI scans, I have to say I’m in pretty good shape. Symptoms, yes. The disease (or as my dear friend Martin calls it ‘This Bastard Thing’) may sleep, but it never dies. (See the page About MS: A cast of characters.) But progression? In all this time, nothing, and that is something to celebrate.
That said, remission is never normality. Because of dizziness and spasticity in my legs, I can’t walk distances without a walking stick. Fatigue has limited me to a 32 hour work week and sometimes even that’s not feasible. And thanks to cognitive dysfunction, a novel that should have taken me a year has taken me five (and counting). But the fact that I even have one in progress should indicate that not all the changes I’ve dealt with have been negative ones.
Never will you hear me say, here or anywhere, that I’m grateful to MS for anything, including the fact that my writing, which languished unattended for at least a decade, emerged from the cataclysm of diagnosis as the driving force of my life. My first blog, ‘The Fairy of Disenchantment’ was a creative gambit designed to gather in more of my life than was encompassed by MS. There, my longstanding passion for writing and poetry got an opportunity to flex, and I was followed and supported by many seriously heavy-hitters in the poetry community and beyond. In time, the persona I’d created there was ready to be retired, but I will always be grateful to those friends (hello, all of you!), and they will occupy a place of honor in the acknowledgements of my book when it’s finished (this year!) and published (2021?)
The book has nothing to do with MS. It’s a high fantasy romance with monsters, gods, ghosts, a tyrannical musical aristocracy, and a hopefully memorable pair of star-crossed lovers who happen to be female. (It’s been important to me to create a bisexual, polyamorous protagonist that absolutely didn’t exist for me when I was 19, and who still speaks for me at 48). I’ll probably post a few updates on my progress here, and maybe some excerpts (though I reserve the right to pull them before Google’s spiders have time to find them).
Similarly, this blog has no focus on my disease. I named it for a short story that I wrote on the old blog (which I might edit and serialize here) that seemed to capture not only my ambivalence to social media but my physical limitations in reading from a screen. (I don’t post here often for that reason, among others.) And for a while, I entertained the subtitle Subversions of Disability, because the motivational disability mainstream really needs punking. But even that set constraints for me that I had to rebel against. So we have what we have, and we see what we get.
Oh, and I think every post should have music, don’t you? Here’s Kishi Bashi, because when I think about novels — and sequels (because when this is done I guess I’ll have write a sequel) — I think of this song: