Watching Jeffrey Sebell’s video about recovery from TBI, about 8 minutes into his talk, he starts discussing recovery and how it’s a big red sign off in the distance. Something to work towards. Something to shoot for. The goal being: get back to where you were before the injury and resume life as you once knew it.
Leaders in the TBI rehab field, most notably Muriel Lezak, say that true recovery from TBI is not possible. Once things in the brain are changed, they’re changed for good, and they’re not going back to exactly how they were before.
I think of a brain injury as being similar to a piece of metal being bent — you can try to bend it back into shape, but it’s never going to be what it was before. What was once straight may be straightened again — it might even look nearly identical to its original state — but the integrity of the metal has been affected, and you’ll always have those little crimps and wrinkles and some structural weakness as a result.
With the brain, the same appears to hold true. At least, that’s what our established science is telling us. The connections that were once solid are sheared, torn, maybe destroyed for good. There’s no turning back to the exact same connections that were there before. That sort of recovery isn’t possible.
But what if that doesn’t matter? What if everyone is just being hyper-rigid about what “recovery” means? What if TBI recovery isn’t about that at all? What if it’s about recovering the parts of our selves and our lives that we lost along the way, rather than restoring specific once-reliable capabilities of our brains? What if our whole idea of “TBI recovery” is too literal, too rigid, and too old-fashioned.
Also, what if it’s totally unrealistic?
The literal concept of “recovering” is about (according to dictionary.reference.com) is:
None of these says anything about returning things to precisely how they were before. There are myriad ways to get back or regain something that was lost or taken away… to make up for a loss or make good on damage.
Regaining strength, composure, balance, and so forth can be done any number of ways — even with shaking hands, a lousy short-term memory, and fatigue issues.
And reclaiming your life from a bad state doesn’t rely exclusively on never being off balance, never getting confused about things, and never getting out of sorts over things that trigger a meltdown.
TBI takes so much from us, in terms of our dignity and self-concept. And those things can be recovered, even if our practical functioning is affected. Our practical functioning can be affected by any number of things, even without TBI.
Anyone who’s “neurotypical” can fail to get a good night’s sleep, and end up foggy and confused all the next day, making stupid mistakes. And those stupid mistakes can land you in hot water, cause an accident, or even send you to jail. That doesn’t mean you can never go back to how you were before. You may have a record, or you may have scars from that car accident, but that doesn’t mean you can’t get back to living your life.
Anyone and everyone goes through times of change and challenge. We can’t help it. We’re here, aren’t we? None of us is the same person we were, 20 years ago. TBI or no… catastrophic illness or no… loss of home, loved ones, and job or no… life shapes us as it will. Some of us just get shaped a bit more aggressively.
So, yeah, the whole spiel about how TBI recovery isn’t possible just makes me nuts. Why make TBI into something that takes from us our ability to respond and react to changes and challenges? It’s silly. We’re still human, and as long as we’re alive, we’ll be responding to changes in our environment, reacting to changes within ourselves, and testing ourselves to see what we’re really all about.
In a sense, TBI recovery is essentially no different from just living a very active and eventful life. We have to adjust, we have to change, we have to learn to deal with new things. Just like people who lose everything in a flood or earthquake… just like people who lose their family, their job, their home, their whole identity in one fell swoop (it happens)… just like people who take a wrong turn into a life of drugs and alcohol or crime… People who experience TBI need to put things back together as best we can. It’s not always easy, but it’s part of life. It’s how it goes, when you’re knocking around on planet earth and you live life to the fullest.
To say that TBI recovery isn’t possible, I believe, is looking at the wrong things. It’s taking thing too literally, and it’s putting the focus on something that doesn’t even matter. We know now that the brain is constantly changing. So, even if you don’t have a brain injury, your brain is probably still going to “remap” itself in significant ways over the course of your lifetime. TBI just speeds up that process and makes it all the more urgent. The beauty part is, it can be done. Neurons step in and take over for their damaged counterparts. Sections of the damaged brain recruit other sections to take on important activities.
A woman in China was born with out a cerebellum, but she’s up and about, walking and talking — maybe not as fluidly as everyone around her, but hell, she’s still walking and talking and living her life.
A man who had a stroke at age that destroyed 97% of the nerves that run from the cerebral cortex to the spine and paralyzed him, learned to crawl, then walk, and went back to teaching at college level in New York City. He died seven years after his stroke while hiking high in the Andes. His heart gave out, not his brain.
It’s these kinds of examples that make me extremely skeptical about the claim that “TBI recovery isn’t possible.” How can it not be possible? How am I walking around today, able to once again go outside, maintain my house and property, interact with and have in-depth conversations with people, read books once more, understand what’s going on in movies, stick with a job longer than a few months, and plan for my future, if there is no TBI recovery?
None of those things were happening with me, just five short years ago.
True, there are significant ongoing issues I face on a regular basis. As I write this, I’m feeling really sick to my stomach, I’m in pain from over-exertion yesterday (I couldn’t seem to stop doing yardwork, even though I knew I was well past my daily limit), my head is splitting, I’m having trouble typing and spelling properly, and I’m off balance and uncoordinated. But I’m here. I’m writing. I’m reading. Plus, I have a plan for the rest of the day that involves ample rest — and yes, more reading and writing.
Are all my faculties returned to their pristine original state? Of course not. Why would they? More importantly, why would they have to? They would never stay in their original pristine state, anyway, because they’d be constantly changing in response to my environment, as well as my own thoughts and attitudes and what I eat and drink.
Instead, I am recovering the things that actually matter and the things that make my life worth living — a sense of agency in the world, the ability to actively manage my issues, meaningful relationships and activities and outlooks that keep moving me forward.
The idea of “recovering” the exact functionality that changed, all those times I got hurt, is a proverbial Trojan horse that’s not just a distraction from real TBI recovery — it also holds real dangers of literal expectations that have nothing to do with the reality of our true human lives. It distracts us from making the kind of progress that will restore the quality of our lives, as well as our Sense-Of-Self, all within the context of taking life as it comes.
The message that people need to get across is not that recovery from TBI isn’t possible, but that you need to focus on recovering the right things.
That, my friends, is entirely possible. It’s to be expected.