Guys in wheelchairs need hugs, too.

If you want to hug the guy in the wheelchair, come on down here. Don’t be shy. Come down where I can reach you. Take a knee or pull up a chair, and let’s do this thing. The A-frame hug – with you bending over at the waist and us both trying to figure out what to do with our faces and where to put our hands –  is better than no hug at all, but it’s not satisfying to me, and probably not to you either. There’s nothing like a real unqualified all out hug and kiss and squeeze. The intensity and duration of the hug and or squeeze is variable consistent with the relationship of the participants and the occasion, and the kiss is always optional (I’ve got a big beard and I fully understand if you don’t want that in your face). But the hug and the squeeze is the whole point.

It’s the same for having a conversation of any consequence or duration. If you come down here, pull up a chair and get down to my level (in more ways than one), we can chat all night and neither of us will get a stiff neck. Doing it this way does require a bit more of a commitment from you – it’s harder to casually wander away when you’re sitting in a chair (trust me, I know). I promise you your commitment will be appreciated.

I’ve been down here, waist high in the world, for some time. The view is occasionally quite interesting – I’ve got a good excuse for looking at people’s butts – but as you can imagine it is usually not terribly inspiring. Of all the things I miss about being down here, apart from the whole “walking” thing, hugs are near the top of the list. Getting down on one knee doesn’t need to feel like you’re proposing to me (sorry guys and gals, he’s happily married!) (although, as my grandfather said, I’ll try anything once.) The whole idea of the arrangement is for less awkwardness.

But if this is getting too complicated, the classic fist bump is perfectly fine. Even better if you jazz it up with some fireworks.

Recommended reading: Waist High in the World, by Nancy Mairs.

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arch“A weird, lovely, fantastic object out of nature like Delicate Arch has a curious ability to remind us – like rock and sunlight and wind in wilderness – that out there is a different world, older and greater and deeper by far than ours, a world which surrounds and sustains the little world of men as sea and sky surround and sustain a ship. The shock of the real. For a little while we are again able to see, as the child sees, a world of marvels. For a few moments, we discover that nothing can be taken for granted, for if this ring of stone is marvelous then all which shaped it is marvelous, and our journey here on earth, able to see and touch and hear in the midst of tangible mysterious things-in-themselves, is the most strange and daring of all adventures.”
From “Desert Solitaire,” by Edward Abbey.

I had in mind a brilliant essay, inspired by Abbey’s passionate and eloquent meditations on solitude, the southwest desert in general, Arches National Park and the pre-dam Glen Canyon in particular, exploring where a man in a wheelchair fits into the natural world. But as so often happens between then and now, those words have wandered away. In lieu of my lost words, I’ll simply leave this passage and highly recommend the book from whence I borrowed it. Perhaps my words will reorganize themselves and find their way onto the page. You’ll be the first to know.

The Mindfulness of Disability

One night back in early December, I fell out of bed. Well, more like slid out. I was wrestling with the flu at the time. My fellow MSers will know what that means. I was feeling overall just plain weak. I sat up on the edge of my bed, and in the process of getting back into it, I started to slide off, and didn’t have the leg or arm strength, or mental clarity, to pull myself back in. So, I let it go and slipped onto the floor. I ended up on my side between the bedside table and the bed, unable to move in any direction. We called the Uh-Oh Squad, and two stalwart young men arrived to haul my bulk up onto a chair. Luckily, the only thing that was injured was my pride.

Like most evolved primates, I’m able to learn from events like this. The take away is a reminder to pay attention to every step. When I am getting out of bed, or transferring from my wheelchair to the stair lift, or out of the bathtub, or from wheelchair to car, or even reaching for something in one of the kitchen cabinets, I need to be fully mindful of what my various appendages are doing. I go so far as to actually talk myself through these transfers, paying attention to every handhold and foot placement and weight shift. It’s a little like playing Twister – left foot there, right hand here, right foot over there, etc., the goal being to not fall down.

Mindfulness extends into other aspects of life. Truman Capote said of Jack Kerouac’s On The Road, “This isn’t writing, it’s just typing.” I used to write that way, though not quite to the same effect. I just let my fingers do the work, pouring words onto the page, just typing. The goal was a kind of mindfulness, not thinking about every word, plunging headlong into the stream of consciousness allowing whatever happened – whatever words appeared – to happen without the filter of mind. I would go back after I was done typing and either make sense of it or not. (I think it is safe to say that both the typing and the editing worked better for Kerouac.) Writing for me now is whole different animal. My fingers don’t work very well, so I have to dictate into a headset. The software that translates my speech into text on the screen is remarkable, but it requires that I speak very slowly and carefully and precisely. I need pay attention to every individual word and punctuation mark. I would like to think that my writing has improved with this kind of mindfulness. There certainly is less of it, and that is perhaps an improvement.

In the end, mindfulness is nothing more than paying attention, being aware of where and when you are – here and now. The practice of mindfulness is identifying the “magic moment,” when the mind, doing what it does, will drift away from what’s right in front of it over and over, providing the practitioner the opportunity to refocus, and begin again. Disability provides many of those moments. Every transfer is a reminder to pay attention to right here and right now. In my case, not being mindful can easily mean falling down.

There are endless resources – books and classes and retreats and such –  for learning and understanding the practice of mindfulness, enough that you could very easily get overwhelmed and lose track … providing another opportunity to take a few slow mindful breaths, and begin again.

Two of my favorite mindfulness teachers are Pema Chodron and Thích Nhất Hạnh. They have both written several books on the practice of mindfulness, and occasionally host seminars and retreats. I also use the Insight Timer smartphone app, which offers a flexible timer and hundreds of guided mediations recorded by dozens of teachers, and connects you to a community of practitioners around the world.

 

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.

“But nothing prepared me for the outsider status of being chronically ill.” Words of insight and wisdom from someone who knows, and is far more eloquent than I. Reading this made me cry.  I want to shout,”YES!” after every line. I have nothing to add, and I pass it along for your consideration.