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 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.
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.
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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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.
So, the Pump. That happened. Here’s the short version of the story.
I had the surgery on December 1. After a very surreal 48 hours, I made it to The Rehab. For whatever reason, my own confusion, being given incomplete information, whatever, I was under the impression that I was only going to be there for 2-3 days, maybe a week. When I got there, I discovered that the plan was for me to be there for two weeks. It took me a few days to calm down, understand and accept the plan. I’d been in the hospital for extended lengths of time before, but as an attending parent, never as a patient. It’s a weird place. I gradually discovered that my mental and physical fitness was constantly being evaluated through every interaction with a nurse or a therapist or a doctor. Each morning, my physical and occupational and speech therapy schedule appeared on a white board in my room. This being the short version, I won’t go into the daily details. Suffice to say that when they told me they were considering letting me out a few days ahead of schedule, I buckled down and followed The Rules to the letter.
My body came home on December 15. It took me at least another week to mentally get home. Needless to say, I was totally unprepared for Christmas. What had happened to my body had thrown me for a huge loop. The baclofen being squirted into my spine was removing much of the spasticity, revealing a surprising underlying weakness. I felt I was back to square one. Simply rising out of a chair required a bit of preplanning and a major effort. Walking down the hall was a challenge. I was guarding my spoons like never before. The fact of my disability was unceremoniously revealed to me.
We all know how it goes with continuing physical therapy. They set up a program of exercises, and leave you to do them on your own every day. Which you don’t do. At least I didn’t. But this time has been different. I’m working with some wonderfully inspiring and dedicated therapists, and actually doing the work. Rebuilding my muscle strength will be a long road. And I am unsure how much mobility I will be able to regain, how much hand strength and small motor skill I can recover/build. But for some reason, the idea that doing that work is my Job, just as important as going off to work, has sunk in. I’m looking forward to a long and productive career.