Welcome to One Life, Mark 2. My goal is to post entries every day – not necessarily about multiple sclerosis or other health related issues, but thoughts, images, quotes, resources, hacks, whacks and snacks. That is the plan. As we all know, the best laid plans of mice and men often go awry. I hope you’ll stick with me, and keep in touch.
“I should like to enjoy this summer flower by flower, as if it were to be the last one for me.”
The practice of mindful living opens our environment to us exposes wonders we never imagined during the years we spent tranced. There is a holiness and fullness to our days now; the present is a good place to be. We are less concerned about the future and as we live more in the here and now, the future simply pours into the present, unnamed.
– from “A Man’s Book of the Spirit.”
How nice to wake up in the morning (my favorite way to start the day) to find that my mind wasn’t racing off in anxiety driven confusion, my legs weren’t cramping, my arms weren’t numb, my back, or neck, or shoulders weren’t aching, and I didn’t have to get up RIGHT NOW to pee. I was actually able to lie back and close my eyes and breathe for an hour. A rare treat.
This sings me to sleep, and often plays on repeat all night. It is a comfort, somehow, to wake in the middle of the night and hear is softly playing in my ear. And to wake up with it repeating in my mind.
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’ve been away from this blog for quite some time, dealing with some complicated shit. More about that later. But for now:
This is what I’ve been talking about. Ordinary people, doing ordinary things. Ordinary people who happen to be in wheelchairs, featured in commercials. Better they should be in mainstream TV shows and movies, but I’ll take what I can get.
- The wheelchairs are not the focus of the story, they’re not even important to the story. This little screenplay could have been acted out equally as powerfully were the actors not in wheelchairs.
- I love the fact that this drama shows people in wheelchairs being physical, active athletes, able to give and take on the court. I love the fact that this is not about people in wheelchairs. This is not about disability.
- I love the fact that it proves that wheelchair users are not “bound” to their chairs. Just as we are moving towards more inclusive “person first” language we have to move away from the image of people in wheelchairs being dependent and stuck or trapped. For these men, like for everybody else who uses a wheelchair, the chair is a vehicle for liberation.
- I love that the story empowers the men in the wheelchairs.
- I love the fact that the kids are fully included in the father’s life and accepting of his disability, perhaps not even seeing it anymore.
- I love the fact that Toyota stands aside, and can promote their message and their product (I still don’t know what model vehicle is being promoted, but, like the wheelchairs, it doesn’t matter.) without having to shout.
- I love seeing myself, or someone who looks like me, portrayed this way in a mainstream commercial. Perhaps only marginalized people will understand this. (A topic for a further and lengthy, discussion.)
In the end, what makes this a really great commercial is that the product (some sort of car, I think…) is only a vehicle (pardon the pun) for the drama of a group of men playing a very physical game of basketball, ending the day without holding grudges.
I hope this film can lead the way toward more fully inclusive roles for people with disabilities.
Did I mention that I love this little film? What do you think?
Three Moments of an Explosion: Stories by China Miéville
My rating: 5 of 5 stars
His novels are hard to classify – part steampunk, part fantasy, a little science fiction. He creates wonderfully detailed and complete cities, continents and worlds, with fully drawn populations and languages and cultures. All of which are so finely drawn as to seem historical and familiar.
This book of 21 stories of varying length and style – screenplays, novellas and short stories – is a smorgasbord. He displays the depth and breadth of his imagination and his command of language and narrative. These stories can serve as an introduction, an “amuse bouche” if you will.
Many 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.