March 23, 2015

The Gift of Temporary Disability

Let me tell you about it, first.

To start with, you probably wouldn't notice it just looking at me. It'd take a pretty sharp observer to see the slightly different way my right arm hangs when at rest, the restricted swing to it (compared to the left one) as I walk. It looks normal, until I try to use it. Then you'll see the awkward way I swing my whole right side into a motion, because I can't lift the arm past a certain point. The strange angles of approach I take to everyday tasks like writing a note, combing my hair, putting on a jacket, etc., because of the severely restricted range of motion.

If you don't look away, you'll see the winces I try to control, as unexpected "radiating pain" hits various parts of my shoulder, back, neck, arm, wrist, hand, fingers, at various times and for no apparent reasons.

If you look very closely indeed, you'll see the traces of chronic pain in deepened lines on my face, and the shadows under my eyes from lack of sleep.

I'm trying very hard, though, to keep you from seeing the non-physical signs of my temporary disability: The irritability that goes with chronic pain and lack of sleep, the "mood trenches" that brim with pessimism and cynicism and self-pity and bitterness. The effort to keep that invisible means I don't chat much. I limit socializing.

And the one final, grinding "sign" of my temporary disability: The loss of energy that turns every day into an exercise in prioritization and calculation: What's most important, and once I've expended all the energy and resources that will take, what else, if anything, can I manage to get done? You won't see that. Or if you do, you're likely to interpret it as depression (which I also suffer from and can you say "heterodyne?" If not, Google it...) or inertia or even laziness.

Now, on to the "gift" part.

First, it's temporary. Prognosis says anywhere from nine months to three years. It's been five months already, which only feels like a millenium or so. But yes, it gets better. (It might come back, in the other shoulder, in this one, or even in both, but I try not to think about that.) So that's a gift. There's a horizon out there somewhere, beyond which I'll be able to sleep through a restful night, put on deodorant without whimpering, use the top closet shelf again, and a whole variety of other formerly-insufficiently-appreciated little things in life.

But there's more: I know what to appreciate:

• The days when pain backs off, and I can be "almost normal" for a while, are positively exhilarating, making me giddy with enjoyment.
  
• The ones who know about it, and pay attention, and adapt based on what they notice, without endlessly asking me how it is now, today, do I need anything, is there anything they can help with. Like my spouse who heard me wincing in the night, and got out of bed, and came around and picked up the body pillow that had fallen to the floor, and snugged it up against my front, and then leaned over to give me a kiss, and went back to the other side of the bed without a word, and turned over and went back to sleep.
  
• The courage and determination of the others I see at physio, finding smiles and things to joke about (forget 'gallows humor,' there's nothing quite like 'weight bench humor') in spite of pain. So can I, then.
  
• The "down times." Yes, even though I hate it that I have no energy many days, I'm learning to appreciate a slower, less ambitious pace. Just sitting and looking out the window with a cup of tea and no sense of pressure to get back to "The List."
  
• Most of all, I'm appreciating my new understanding of what it is like to have a disability. It can't be described, really. It has to be experienced, I think. The dirty look from the woman behind me because I couldn't grab the door and hold it open for her after I went through it. The quizzical look from the stout youngster at the store I had to ask to reach a heavy can from a shelf for me. The kid who asked Mom why the funny lady put on her coat like that. And the disappointment, resentment, the careful patience, the artificially accommodating cheerfulness from people I have to say "no" to, because I just can't do the things I used to.

It's not a barrel of laughs to feel gratitude for these things, but I do feel it. I savor it-- not in a self-pitying way (mostly) but in a mindful way. Because these are important things to know and to experience, and I don't want to forget them even when I'm no longer disabled.

There is no single human quality more valuable to me (and, I firmly believe, to all of us, collectively-- because it allows us to evolve) than empathy. The ability to sense how others experience life and the feelings that come with those experiences.

And no matter how thoughtfully I tried to imagine what it must be like for a disabled person to experience the challenges of living in a world that assumes the absence of disability, I could never have reached this level of understanding without my own experience.

I wouldn't wish this on anyone else. Not the pain, not the sleeplessness, the anger, the lack of energy, the self-pity, the grinding effort. But if there were a "consciousness transfer ray" that would let you join me here in my body, in my brain, in my awareness, for just a little while, I'd welcome you.

I believe you'd hate the experience as much as I do, but then... you'd look in the rearview mirror, and see the difference between what you understood before, and what you understand now. And you'd say "thank you," too.

gratefully,
Bright