Forward, into the past!

107 “Children and hot fluid should be kept apart.” Sage advice from the side of my French-press coffee brewer.

A new reader of One Life (that brings my total readership to three or four) has been bravely going into the Archives and posting comments and likes (thank you, Katherine and your wonderful Photobooth Journal), inspiring me to delve back into the past. I was surprised to find how far back One Life goes – all the way back to February of 2005. I spent far too much of yesterday afternoon pawing around, reacquainting myself with myself.

What I found was a personal journal, musing about what I was doing day-to-day, observations about my early experiences with multiple sclerosis, family and work life. Usually there was a photograph attached, although the links have long expired so I don’t know what the pictures were of. Lots of links to other sites, odd things found online, what music was playing as I wrote, those links long expired too. In the end, the record is only interesting to me, and even then, not very.

But I feel inspired to get back on the horse. To stop taking myself and my blogging so seriously. What paralyzes me now is the self-imposed notion that each post has to be a fully thought out and insightful essay. I have a folder on my hard drive of barely begun such essays, writings that invariably get tangled up with lost threads and wind up pointless. Almost as if I was writing for an audience, and not just for myself. Imagine that!

Well, no more. I’m going to write what I want. I hope you’ll come along for the ride and share your thoughts; I’d love for this to be as much of a conversation as it can be.

What’s playing: Sweet Jane. Thanks, as always, to Radio Paradise, the best radio station ever.

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My Clown Car

I’ve been working on this post for a month. The central image equates my wheelchair to a Shriner’s clown car, but the narrative has been eluding me.

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In each attempt and revision, I find myself bumping up against the same wall. I originally thought it would be a quick anecdote, amusing and off-hand, but the more I thought and wrote, the deeper and more tangled it got. I came to the realization (one of several) that I do not identify as a person with disability, but as non-disabled person who can’t walk. I can still stand briefly, with effort and grab bars, so my memories of walking are fresh and un-fading. Such a simple thing, standing up and going for a walk. The idea persists that this disability is only a passing thing, and that if I keep working my PT program, eat clean, etc., I’ll be back on my feet. Disability is an attitude, right? Being sick and never getting better does not make any sense. How can this be? Even I don’t believe that I can’t walk. I feel a bit like a fraud.

There’s a measure of shame when I ask for accommodations, when I “allow” people to do things for me that I “should” be able to do myself. That I am somehow faking or not trying hard enough or that I’ve given up and given in. That I am making a choice not to walk. I know none of that is true, but a large part of me isn’t convinced. There is no objective evidence, no clear reason why I can’t walk. All I have is an MRI image of my brain with dark spots and blank spots and a lot of grey, none of which is comprehensible to me.

Any time I venture out into the world, I am reminded, in no uncertain terms, that the world sees me as less. It is a world not made for people like me. A simple thing like not being able to walk puts endless obstacles in my path, obstacles that would vanish if I would just get up out my stupid clown car. It is a constant challenge not to give in to shenpa and “bite the hook” that dangles, tantalizing, in front of me. This feeling of being less is absorbed subliminally, through the skin. A blatant indicator of my less-ness is with me everywhere I go. It’s the clown car I sit in every day.

Further reading: Waist High in the World, by Nancy Mairs. Shout-out to my peeps at MyCounterpane.com for their unflagging support and encouragement. Thanks to Radio Paradise for providing the soundtrack. And finally, I mean no disrespect to The Shriners or their little cars, who have provided many years of service and entertainment to the wider world. Long may you roll.