The roots of our brain injury recovery

What's beneath can be much more compelling than what's visible
What’s beneath can be much more compelling than what’s visible

Whether you’re concussed, had a stroke, were involved in a motor vehicle accident, or something in your brain ruptured… that injury has literally turned you into a different person.

Read more here — where I discuss the various aspects of understanding the nature of TBI and recovery on  my TBI research blog at https://tbiresearchriffs.wordpress.com/2016/02/16/the-roots-of-our-brain-injury-recovery/

#PCS after #concussion? #TBI? Welcome to the #MiserableMinority

"Neuropsychology of Malingering Casebook" miserable minority reference
Neuropsychology of Malingering Casebook” Miserable Minority reference – click to see full-size

I’ve had better days. I worked from home, yesterday, due to a combination of bad weather and having no compelling reason to drag myself to the office. I had hoped to get into the office today, but after a couple of hours of being up, I had to go back to bed.

Migraine. Pain. Just feeling wiped out. Not sick, just all turned around, the way I get sometimes when my head and body aren’t cooperating with each other and the rest of the world very well.

Not much fun.

I did get to bed at a decent hour, last night, so that was good. But it didn’t seem to help much, this morning.

So, when I ran out of steam this morning, I just went back to bed. I set my alarm for 11:30, because I had a 12 noon conference call scheduled. I woke up a little earlier, and lay in bed, curtains closed, just trying to get myself in gear. Usually, I can. And today I could have, but when the notification came through that my conf call was cancelled — Oh, sweet relief!

And I stayed in bed. I had my tablet on the bedside table, so I checked Twitter, and wouldn’t you know, there were a bunch of tweets about the concept of the Miserable Minority — those folks who have been concussed, whose symptoms don’t clear up within a few weeks.

Apparently, it’s a “thing” — this subgroup of concussed people who don’t bounce right back the way everybody else seems to do. And neuropsychologists have been referring to us as “the Miserable Minority” (I’ll say MM for short) for quite some time. It’s still going on.

I’m not sure how I feel about that. It strikes me as just a tad dismissive. Do they intend to ridicule us? ‘Cause that’s sorta kinda how it sounds.

I’m not sure what goes on in the minds of these folks. I know that in medicine and science, having a label for a subgroup can let you talk about that group and develop uniform “game plans” for them. So, that could be handy.

I just wish they had a way of talking about us that doesn’t make us sound like a bunch of whiners, complainers, and malingerers. It also minimizes our struggles, by calling us a “minority” — as though we don’t quite warrant all that much concern or attention or focus. I’ve heard that there are conference topics devoted to us, but I don’t have the evidence to support it (yet) — workin’ on it.

Believe me, I’d much rather be at work, right now, tapping away at my company-issued keyboard, than sitting in a darkened room, having to choose between light that makes my head hurt and not getting anything productive done.

The one thing that I wish our healthcare providers would understand through and through, is that this “Miserable Minority” is made up of a sh*t-ton of high achievers, Type A folks, formerly functional superstars, and strong-spirited individuals who crave contribution to the larger world. We’re not the kind to sit around making excuses and complaining for the fun of it. Or because we want attention. We’d much rather be back on our feet, able to participate as the gifted, talented, determined individuals we are.

But because medicine hasn’t figured out how, yet, and because too many providers are lax in mastering their material, we’re stuck in this limbo.

Yes, it can be miserable.

But we’d rather not be. And some of us would give anything to not belong to this “minority”. The last thing I want to do, is linger in this foggy haze of pain and blurred senses. And I know I’m not the only one.