Welcome to DU! The truly grassroots left-of-center political community where regular people, not algorithms, drive the discussions and set the standards. Join the community: Create a free account Support DU (and get rid of ads!): Become a Star Member All Forums Issue Forums Culture Forums Alliance Forums Region Forums Support Forums Help & Search

TygrBright

(20,733 posts)
Mon Mar 23, 2015, 04:07 PM Mar 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

11 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies

pnwmom

(108,925 posts)
1. Thank you for this beautiful, thoughtful piece, TygrBright.
Mon Mar 23, 2015, 04:18 PM
Mar 2015

Maybe what you're describing is part of what Catholic theologians mean when they talk about the value of suffering. It does make people appreciate what they have, and can increase empathy for the struggles of others. And in your case it might even be drawing you and your spouse closer.

Still, I'm sorry that you have to go through this, and I hope it's over sooner rather than later.

TygrBright

(20,733 posts)
4. Thank you for the kind words & good wishes.
Mon Mar 23, 2015, 04:39 PM
Mar 2015

There was a theologian (not sure what denomination) who wrote a paper called "The Comfort Trap" that wasn't so much about the value of suffering, as about the problems connected with insulating ourselves from the negative experiences of others.

A slightly different perspective, but this is giving me new understanding of what that means, too.

appreciatively,
Bright

TygrBright

(20,733 posts)
5. I prefer to think it's good coping mechanisms.
Mon Mar 23, 2015, 04:45 PM
Mar 2015

The meds are a terrible trap. Making the choice between pain now and worse pain later, it's all too easy to make the wrong choice.

By letting the pharmaceutical companies turn pain into a profit center, we've taken a giant step backward from developing better, safer, more sustainable ways of managing chronic pain.

But I know a few individuals who live with chronic pain and manage to be kind and pleasant when they're among friends, so I know it can be done.

Takes a helluvan effort.

admiringly,
Bright

Ms. Toad

(33,915 posts)
3. I had a similar experience of being temporarily disabled,
Mon Mar 23, 2015, 04:28 PM
Mar 2015

with a mostly invisible disability when I lived with vertigo for 11 months. I experienced much of what you did - and also experienced it as a gift to be reminded (and more mindful) of the reality that as severely disabling as it was, it was only temporary.

Looking back, I am grateful to be still caught off guard every once in a while when I do - without thinking - things which took my last spoon when vertigo was a central rather than the extreme peripheral part of my life it is now.

I vividly recall:

  • the first Metro ride in DC - and the panic I felt when I realized that I might not be able to stand up and move to the exit quickly enough after the train was still enough that I could actually get out of my seat
  • the fear I felt riding down an escalator - cane in front of me becuase I needed it to stabilize me as I stepped off the escalator - being shoved from behind and torn between turning around and yelling at the shover to stop so I didn't do a face plant, and the reality that I didn't have time to do that before I had to step off the escalator or be trampled.
  • The constant jostling by people who were oblivious to personal space (even though I used a cane whenever I went out in public primarily as a visual sign that I was not stable).
  • The regular panic attacks I started having because of incidents like the above, and how constantly tired I felt any day I had to do anything in public, and
  • just recently, being caught off guard by the utter freedom I felt walking up a moving escalator without holding the rails - something I could not have done not just about a year prior, and something I had taken completely for granted a year before that.


I would not wish my year of vertigo on anyone - but I think we would be much more aware of, and welcoming of, individuals who face chronic challenges living if we each periodically shared that experience.

TygrBright

(20,733 posts)
6. Thank you for linking to the Spoon Theory!
Mon Mar 23, 2015, 04:52 PM
Mar 2015

I do encourage people to click that link and read the story. It's one of the best and most vivid explanations anyone's come up with, to explain what it's like to live with a chronic condition/disability.

And thank you for sharing that last little experience with me-- the walking up the escalator one. Just recently I had a "sign" my problem might be starting to move in a good direction, too-- was able to pick up a dropped item from under a table by reaching for it, without too much pain, rather than having to get down on hands and knees, scootch over to it, and pick it up left-handed, then find a place to put it while I struggle to my feet again.

It felt like a BIG deal to be able to do that. Taking pleasure in the small things is a good exercise.

amiably,
Bright

we can do it

(12,118 posts)
7. Into my third month of physical therapy right now, with another to go- hang in there!
Mon Mar 23, 2015, 04:54 PM
Mar 2015

Did you have a shoulder reconstruction? I did that about 15 years ago and it sounds like you are going through the same things I did. You WILL make it through, and it will continually get better. It takes a lot longer than it seems it should.

This time I am correcting muscle imbalance in lower back, hips, feet and legs, which probably got started when I injured my shoulder. We are also correcting the bad patterns picked up, slow and tedious but it is working and I can now sleep better than I have the past 3 years.

Hugs to you- stick with it it is most certainly worth it.

TygrBright

(20,733 posts)
8. Thank you!
Mon Mar 23, 2015, 05:02 PM
Mar 2015

Not surgery or reconstruction, but a weird, annoying, under-researched (probably because it affects post-menopausal women more than any other population group,) condition called adhesive capsulitis or "frozen shoulder."

It adds the insult of not having a clearly understood etiology or a reliable course of treatment to mitigate, to the injury of the condition itself.

Good luck to you on correcting your imbalance. I am learning a lot about "chain reactions" connected to physical impairment, hoping to prevent the worst of that.

patiently,
Bright

we can do it

(12,118 posts)
9. Poor you!
Mon Mar 23, 2015, 05:07 PM
Mar 2015

My therapists after my shoulder surgery said that was a possibility if I didn't do- or keep up with my therapy and stretching (it worked- I try to work in some stretching and shoulder exercises every week)

Stay patient, but determined and you will kick it!

Fumesucker

(45,851 posts)
10. I've been there three times in my life, twice more or less invisible and once a badly broken leg
Mon Mar 23, 2015, 05:16 PM
Mar 2015

Once in fact was similar to your problem but it was both shoulders, couldn't put a jacket on by myself and putting on a t shirt was impossible, everything had to be button up or I couldn't wear it. Oddly it came on by itself and even more weirdly went away after about ten months or so, doctors never could figure out what the problem was.

You are quite right, it gives you an appreciation for being relatively pain free and able to do things for yourself..

Good luck!

TygrBright

(20,733 posts)
11. Thanks! Might well have been the same condition.
Mon Mar 23, 2015, 05:30 PM
Mar 2015

Although it's most common in women 40-70, it can affect just about anyone. I'm learning a lot about it in self-defense. It's very under-diagnosed; a lot of medical professionals don't have much awareness about it.

It varies greatly from person to person in the levels of impairment, duration, and pain, but once a medical professional is aware of it, it's not too difficult to discern, based on the specifics of the range of motion impairment and what happens to the shoulder joint in certain types of movement.

It does eventually go away in most people.

It's a pisser while it lasts though. Glad yours went away and I hope it never comes back!

appreciatively,
Bright

Latest Discussions»General Discussion»The Gift of Temporary Dis...