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. (For you muggles, any kind of flu or cold or infection can send multiple sclerosis symptoms out of control.) 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. 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. When one of Jack Kerouac’s critics first saw the manuscript of the book, “On The Road,” he said, “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 to be mindless, to not think about every word, plunging headlong into the stream of consciousness. 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. It has become an exercise in mindfulness. My fingers don’t work so well, so I have to dictate into a headset. The software that translates my speech into text on the screen works remarkably well, but it requires that I speak very slowly and carefully and precisely. I need to be conscious of every individual word and punctuation mark. I would like to think that my writing has improved with mindfulness. There certainly is less of it, and that is probably an improvement.

There are books and websites and seminars and retreats and smart phone apps dedicated to the practice of mindfulness. Those are all well and good, but in the end, mindfulness is nothing more than paying attention. Mindfulness just means being aware of what’s going on around you. The practice of mindfulness is identifying the “magic moment,” when the mind drifts away from what’s right in front of it, providing the practitioner the opportunity to refocus, and begin again. There are endless opportunities in every day to begin again. Disability provides many of them. In my case, not being mindful can easily mean falling down.

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.

One Word

I’m not a New Year’s resolution kind of guy. As with most people, there are far too many broken resolutions littering my past. But I came across an interesting idea recently, which is to pick a word around which to frame the new year. I picked, “simplify.” In conjunction with my efforts at mindfulness, I might only apply “simplify” to this month, or even this day, or even the current moment. In whatever way, I will try to keep “simplify” as my byword as I move into 2017.

There’s only so much I can simplify, what with adaptive equipment, various therapies, medications, appointments, etc. Disability is complicated. Identifying things in my daily life that I can simplify is a mindfulness and simplification process in itself, a valuable exercise, if only in self-examination.

I hope that by moving from “resolution,” to “byword,” I will be more likely to stick to it. Isn’t this what Post-it notes are for?

If you were to pick one word to frame your new year around, what would it be?

I can’t.

I was all set to write  post about finally embracing, “I can’t.” I have tried to remind myself that of course I can. It might take me 4 times as long, and it might wreck me for the rest of the day. It might leave me grunting like a Wimbledon tennis player when I “walk” down the hall, it might find me half way into an activity thinking I’ve made a terrible mistake. But in the end, I’ve told myself, I always can – in one way or another. This morning, as I wrestled with an enormous All-Clad skillet in the sink, one of the angels on my shoulder (not sure which one) whispered “It’s OK to say you can’t.”

“Yeah,” I replied.”My body has limitations, and it’s OK for me to say I can’t. Right on.” I’ve been posting – ad nauseam – on Facebook about the Paralympics (I hope you’ll be watching along with me!), so turned on by watching these athletes who trained for their particular event just as hard as the Olympians who performed two weeks ago, but who had to train through blindness or traumatic injury or some other disability.

Then this morning, scrolling Facebook, I watched a little video about the Paralympic soccer team. One player prefaced his story with the phrase, “When I woke up from the coma…” I watch them train, while listening to them talk matter-of-factly about their brain injury, or cerebral palsy, and I ask myself, what’s my excuse?

So it reposted the little video about the soccer team with my comment that,”Each time I arrive at “I can’t,” I am encouraged to take one more step.” It would be so easy – too easy – to just say I can’t. But I’d know that it’s not true. And even if no one ever accused me of being a quitter, I’d know.

So I’m ging to watch as much of the Paralympics as I can, and remind myself that I  can always take one more step.

iu

 

I’m not the MS guy

cropped-avatar200.jpegMany years ago, my daughter had a heart transplant – a sudden and at times terrifying journey. It all worked out remarkably well, better than we dared hope. After her surgery, I thought it might be a good idea to have her sit with a therapist to talk about any emotional issues she might be struggling with. In the end, she didn’t really understand what she was doing there, and the take-away was that she didn’t want to be The Heart Transplant Girl. She just wanted to be like everyone else.

In much the same way, I don’t want to be The MS Guy. Multiple sclerosis persists intruding in my everyday, so there is only so far away from it I can get. But my inbox is filled with updates and newsletters and new blog posts and comments from various forums I participate in. I feel somehow obligated to read it all, as if it is a responsibility, part of taking care of myself. I could spend every minute of the day reading the latest, and following links, and investigating new ideas and therapies. I feel pulled to be an advocate for MS, for disability issues, and as a member to The Disabled Community. And on and on. I wind up not only dealing with my own MS body and brain, but I border on obsessing about MS outside of myself. As if I don’t want to miss any tid-bit of important news. It gets overwhelming. To the point where it begins to crowd out other things I’d like to be thinking about.

So although I’ll never be able to forget that I have MS (the MonSter), I try to find ways to move it at least to a side burner on the stove, if not a back burner. And perhaps for a little while each day, to not be The MS Guy.

Does diversity include disability?

The LA Times recently published “A list of 100 people in Hollywood who could help fix the Academy’s diversity problem.”  The list is replete with people of all colors, races, creeds and gender identities. The writers of the list said they spoke with dozens of “Hollywood insiders” to come up with the list. It seems that they didn’t talk with any of the 650 million in the largest minority group in the world. Out of 100 insiders, there is not one with disability. Could it be that there are no Hollywood insiders with disability? No wonder all we get are able-bodied actors playing the parts of people with disability, and able-bodied writers writing about disability.

When I watch TV or a movie, I see plenty of diversity in skin color and gender. But I very rarely see anyone with a disability – a person like me. When I do, it’s usually an able-bodied actor taking the role. Yes, there was R.J. Mitte in Breaking Bad, and well done at that. But remember Arte in Glee? Blair Underwood in the ill-fated Ironside? DJ Qualls in Legit? In the remake of “Roots,” how many of the African parts went to white actors in blackface? I’d put my money on “none.” How long would women – or any of us –  put up with every female role being played by male actors in drag? Not long.

I don’t need a feature film about me. I don’t need a TV show about me, although that would be nice. All I want is to see myself reflected on the screen. Imagine “Friends,” where Phoebe is in a wheelchair. The show need be no more about the wheelchair than it was about her quirky music. (Remember “Smelly Cat?”) She’d be exactly the same character, except she’d be in a wheelchair, played by Teal Sherer, of “My Gimpy Life” fame. That’s all. I’d be fully satisfied by that.

(I will admit that I am not a consumer of current television programming, so I may well have missed something. Correct me if I’m wrong.)

And while we’re at it, remember, Corporate America, people with disabilities go to McDonald’s, they buy cars, and engage in sports. And there’s a heck of a lot of us. Just sayin’.

If any of my millions of Faithful Readers have any expertise in, connection with, or inclination towards screenwriting or media production, drop me a line.

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Take a spin in my head

I wrote this after being rudely awoken, far earlier than I would have liked, by my near constant companion Jimmy.)

How about this. You wake up in the morning feeling like someone has been pounding on your left triceps.  If you’ve ever climbed a big mountain or done a long run or trail hike, you might know what this feels like. Except, this morning, you have the pain without having enjoyed the climb that caused it. It’s just there. No reason, it just aches. There’s medication, a whole bottle of it, right there beside your bed, that might, in an hour, dull the pain. Or it might not, no way to tell. Either way, as a side effect you will spend the morning in a fog – dizzy, weak, uncoordinated, disoriented. And desperately tired.  You get woken up too early every single morning with a variation of the same pain. It might be the other leg, or your lower back, or one shoulder or the other. Pain is pain, am I right? Thinking clearly is over-rated ayway.

Tell me – would you reach for the pill bottle, or decide to ride out the pain, which will probably go away on its own eventually. Or it might not. Give it some thought, if you can with that ache in your leg.