There weren’t so many MS blogs 15 years ago, when I was looking for companionship, comrade, anyone else with MS! I was 25, dealing with the disease for five years and I had met like two other people with it. I was a voracious reader, and I was searching for something, someone.
I found the Wheelchair Kamakazie, aka Marc Steckler. His blog was funny, refreshing, as he detailed his daily life, living and cursing through New York City through the lens of a disabled man. He fixed a camera to the arm of his wheelchair and documented his experience.
He wrote about what it was like to be in his younger years and suffering from an incurable, progressive disease. He was the light in darkness of MS Creative writing. I looked forward to magazines from National MS Society, MS Focus and the blog from the Wheelchair Kamakazie.
I even started a brief blog, feeling inspiration, but it was short lived as I didn’t know where to advertise. Was I comfortable bearing my MS self, those deep down secrets about every pee break being a struggle, or dark, shameful seizures that I was convinced look like a scene from the exorcist; no, no I wasn’t.
However I was heartened as I read about Marc Stecker’s wheelchair adventures around New York City. He wrote about MS in a nonchalant, an aspect of life and though important, though consuming; still an aspect of a life larger than MS.
All these years later; with my own blog going for a couple years, I wondered about the Wheelchair Kamakazie. Was he still writing? Where is Marc Stecker? How is he doing battling his disease. And why isn’t anyone taking about him anymore. The newest Google search turned up a few hits; his last post from Dec 31, 2018.
The feeling that a warrior, even if he doesn’t have the strength to keep writing, could be largely forgotten by the Foundations and MS Agencies that relied on him and shared his work, troubles me. I’m sure there are fans out there, wondering what happened to Marc Stecker. There are bloggers, like me, who get burnt out and look at the diamond of a blog that meant so much to so many: in a desert of MS Content… and think is that me in a few years? If MS progresses, if I can’t do this anymore much longer, if I get burnt out, if I need to concentrate on another aspect of life. Will what I leave behind still be valued?
So if anyone knows where Marc is, how he’s doing, let him know a fellow blogger he inspired still thinks of him, still is grateful to him, for being a beacon among the rocks of silence around MS at the beginning of the 21st century.
(Just want to note unfortunately I hadn’t run across Cathy Chester’s MS Blog: An Empowered Spirit. She’s another long time MS blogger and writer and glad to have found it now. )
That’s all for this week. Lot’s of life going on, tragedy around us, daily MS, and lots of drafts begging to be finished and published. One step at a time. May God be with you til we meet again: