I read an article yesterday by Neil Gaiman about Terry Pratchett, author of the fantastic, funny, wise, and seriously wonderful Discworld series. Neil was asked about Terry, about how he must be such fun.
Neil told a story of Terry, about how he’d been furious one time and about how he’d told Neil that it was the fury that drove him to write. He was furious about his Alzheimer’s. I felt a surge of recognition.
Though I try to out a good face on it of acceptance and “enjoy each day”, I am completely furious that multiple sclerosis has robbed me of my life. Scrape the surface of my cheer and you’re likely to see tears or rage. I spent years, years, educating my mind. I was moving rapidly forward on my career, heading for a position where I could have significant impact on things. I wanted that, I tasted that, I respected people with a mission. And then MS came and struck my brain. Cognitive assessments tell me I should concentrate on things requiring no more than 20 minutes concentration.
This is very true for complicated tasks, and , alas, my writing. So I’m trying to shift my focus to less verbal/executive/numerical things, to more generalized creativity, but I feel the loss. I feel it every day I get up and am baffled by simple tasks. It breaks my heart, every day.
And so I rage. And like many, I turn that rage inwards, towards depression. Part of the depression is because of the MS brain damage – perhaps the depression associated with Parkinson’s damage was the final push for Robin Williams, poor and wonderful man. Part is because, like Terry and Robin, I share the telescope-turned-backwards view of a progressive, disabling disease that will not just kill me, but will make me a crippled, incompetent, incontinent, dependent thing first.
It’s all about generativity. About the ability to contribute in some meaningful way. For Terry and Robin, perhaps the thought of no longer being able to be brilliant is/was too much. I’m not burdened by assumptions of brilliance – I’m nowhere near these guys on the scale. They bring (still) joy to millions, I might do the same for a few, and I’m content with that, most of the time.
Other times I grieve what I might have been.
And then I give my head a shake and vow to make every minute count while I can still manage those twenty minutes. So I pick up my pen, my creative projects, my advocacy, my friendships, my joy, and surge onwards…
Because it’s the rage that fuels me, too.