Debunking Ten Myths of (TBI) “Recovery”? – Myth #1

Activation of Brain Region Predicts Altruism.
What do the experts have to say?

I recently was sent a comment by a reader who referenced the following 10 myths of Head-Injury in their comment. I wasn’t able to publish the comment, but I’ll share what they sent along to me. I’m not sure how I feel about the 10 myths which are discussed. The first one, for starters, is full of things I don’t really agree with. And I’ll tell you exactly why in this post. It’s only fair, since the book/writing in question is by some very famous and authoritative experts who (as far as I can tell) aren’t actually brain injury survivors. I’m sure they have their reasons for saying what they do, but I’d like to weigh in with a different perspective

~from CH2 “The Nature of Head Injury” by Thomas Kay, Ph.D. and Muriel Lezak, Ph.D., the book is entitled “Traumatic Brain Injury and Vocational Rehabilitation”, Published by The Research and Training Center, University of Wisconsin-Stout.

Myth #1: The Concept of “Recovery”
Throughout this chapter we avoid such phrases as “recovery after head injury,” There is a reason for this. Most people’s experience, and therefore expectations, regarding illness and injury is one of temporary reduction in functioning, followed by a gradual return to normalcy. People get sick, go to hospital, and get better. Bones are broken, casts applied for a period, muscle strength regained over several months, and scars fade.

BB: The refusal to use the word “recovery” in terms of brain injury is, in my opinion, a huge mistake. It deprives us of hope, and it gets us thinking that we’ll never, ever be able to regain our lives as functioning human beings. It strips us of our humanity — and for what? Semantics? Some overblown sense of self-importance that certain “qualified” people can (and are allowed to) decide what words others should and should not use to describe their journey back to functioning?

I think that clinicians and other experts are using it in the narrow sense — regaining the full use of every single faculty that was impacted by brain injury exactly the same way it was before. And that narrowness does us a disservice, in a number of ways.

First, as we grow and change and mature, our brains are constantly changing, anyway, so the idea that any person — after a significant experience — would be the same after the event, as they were before doesn’t hold up, either with or without brain injury. We are constantly changing, constantly growing. We move forward, and we slip back. That’s just the human condition, and we are built to overcome setbacks. Implying it’s impossible for us to regain our ability to function after brain injury is one of the dumbest things I’ve ever heard. If that were true, I’d be a vegetable by now.

When commonplace notion of recovery is applied to head injury, however, considerable harm can be done. Almost never does a patient “recover;” the residual deficits are usually significant and permanent. The continual expectation of recovery can lead clients and families into denial, frustration, disappointment, and even worse, extremely unrealistic expectations and planning.

BB: Yes, I get that people get their hopes up about being able to get back to where they were before, and sometimes it doesn’t happen. But it seems to me the real harm is in people who are supposed to be helping and caring, not bothering to help people move on. “Almost never does a patient ‘recover’?!” WTF?! That’s ridiculous. Maybe they’re talking about moderate or severe brain injury, where large portions of the brain are destroyed. Okay, then… but still, it’s possible for the brain to reorganize itself. If this is true all across the board, then how about Paul Bach y Rita’s father, who had something like 75% of the motor ability section of his brain destroyed by stroke, yet recovered and went on to take up mountain climbing? Please. Significant and permanent residual deficits are not going to be helped by people giving up and saying, “Oh, well… you’re brain injured, so I guess you’re screwed.”

A continual expectation of recovery is NOT bad. You just have to define what kind of recovery you want. Okay, so maybe you can’t keep your balance as well as you once did. Maybe your coordination isn’t as great. But we know much more about brains and neuroplasticity now, than ever before, and who’s to say it couldn’t happen in the future, with the right approach and the right dedication? I’m really convinced that it is possible to restore functioning in ways that these experts think is impossible — largely because I’m doing it.

Four years ago, I was putting myself directly in harm’s way, hiking down deer paths in camouflage during deer hunting season (no kidding). I was spending money like there was no tomorrow. Six years ago, I would sit in front of my computer at work and just stare at it for hours. I would flip out on people who came into my cubicle. I would try to pick fights with on-duty policemen. I don’t do that anymore. I am recovering.

Moreover, the successful rehabilitation of the head injured person cannot take place until they and their family are aware of the new limitations, accept them, and formulate new goals based on changed expectations.

To speak of, and implicitly believe in and hold out the hope for recovery as defined in the first paragraph can severely impede this process. Of course, this process of awareness and acceptance, on the part of the family, is a process that takes time. Certainly families, especially in the early stages, must hold out hope. However, we prefer to speak in terms of hope for as much improvement as possible, to build in realistic expectations from the beginning.

This is crap, if you expect this to apply to everyone all across the board. There are so many exceptions to this, I can’t even begin to say — starting with myself. I do implicitly believe and hold out hope for my own recovery — precisely as it is defined in the first paragraph. I don’t care what they say. It has NOT impeded my progress. If anything, it’s improved it. Holding out hope for “as much improvement as possible” is beneath us — as human beings and as survivors of brain injury. And “realistic expectations”, as far as I’m concerned, are just ways for experts to help caregivers who are totally tweaked by the experience of having a loved one sustain a brain injury, to shield themselves from the rigors of building back what you’ve lost.

Seriously, the big myth of this first point, from where I’m sitting, is that there can be no recovery. That’s crap. My neuropsych says so, and so do I.

More senseless gun violence

A good friend of mine lost their nephew last week. I don’t know all the details, but I do know he was shot. Apparently at a bar. I’m not sure they know who did it, but even if they did, it won’t bring him back. It all seems so random. I didn’t know the man, and I don’t know if he was in some kind of trouble, himself, but even if he was, being shot over something — anything — hardly seems like it can be justified. By anyone. For any reason. I know there are folks out there who  believe in payback and are hardened to the effects that the most extreme forms of payback have on the “debtors”…  but I’m not one of them.

For every person who “gets what they deserved” — if they “deserved” it at all, which is usually doubtful — there are family members, friends, loved-ones, who are crushed by that aspect of the world we live in. It’s not just about “paying back” the person who did wrong — it’s about devastating the lives and hearts and futures of everyone who was connected with the person who was taken out.

Gun violence seems to be on the rise, given news reports. And it’s happening worldwide. There have been several recent incidents in Germany of people taking out numerous others — a young man killed 15 people on a shooting rampage in southern Germany this past March, a man killed his wife and child around that same time, and just recently, a court shooting in Bavaria left two people dead.

In the States, we’ve seen shootings, too.  In Alabama this past March, a man went on a shooting spree that left ten people dead, many of them children. And just recently, 13 people were shot dead in New York, and a nurse and seven elderly people at a nursing home in North Carolina were gunned down. It’s everywhere. And it happens all year round. Last year during the holidays, shoppers in an L.A. toy store had to duck for cover as a fistfight between two women turned into a pitched gun battle between their men.

Everywhere I look, these days, there seems to be gun violence. Explosive destruction on a small scale that ripples out with baffling waves of shock.

The philosopher in me wants to find some deeper meaning to this. The engineer in me wants to find the root causes and figure out a solution. The mystic in me wants to lift my eyes unto the hills and focus on Eternity. The citizen in me wants to run and hide. The social reformer in me wants both stronger firearms controls, limits on what kinds of weapons are commonly available, mandatory licensing for anyone who buys ammunition, and mandatory training in gun use for all individuals, starting at age seven (or when they’re old enough to fire a gun without getting knocked over, whichever comes first). The friend in me wants to just sit with my friend in total silence for hours on end, just being quiet, just being there for them and whatever they need.

The TBI suvivor in me is glad I don’t have a gun. I have specifically chosen not to own a firearm, not to use firearms, not to go down to the firing range to blow off steam, not to go out hunting with my dad and brother and uncles. Now, I was raised in a family of hunters, and I was taught to shoot from when I was about seven or eight years old. My dad took me out to the stubble-covered cornfields with his brothers, ’round about the time when hunting season was about to start, and we all practiced our aim on tin cans. I learned to shoot shotguns, 30-aught-sixes, and 22’s.

I went out hunting with my dad a few times, too. Deer hunting, when we went out to a cabin in the woods, got up before dawn, and I sat up in a tree stand, while he circled around to drive the deer my way. We went rabbit hunting, too. But I had a hard time seeing the rabbit, and he had to kill it for me.

Now, ever since I was a little kid, I looked forward to being one of the family hunters. One of the providers for my tribe. One of the ones who went out and did what needed to be done, to make sure my kin were fed. But I had trouble seeing, I had trouble hearing, I had trouble with my coordination. And as hard as I tried, as much as I wanted it, the whole hunting thing never “took” with me.

It wasn’t for lack of trying. I learned to track, I learned to clean a gun. I learned to shoot. I learned proper handling of rifles and shotguns. I learned how to carry a gun while I was walking around other people. And I did it all enthusiatically, from a very young age. Even  before I was able to carry and fire a real gun, I was pretending to do that, dressing up in my dad’s orange hunting vest, making sure the hunting license was clearly visible on the back.

But I think my better angels have protected me from handling guns — even in legitimate sport. I have issues with motor coordination. I have trouble with my sight and hearing at times. I also have trouble with figuring out exactly what is going on, sometimes. And I have — when I’m fatigued and/or stressed — a tendency to “go off” on raging temper flares which I manage with varying degrees of success.

Quite frankly, I make a terrible candidate for gun ownership. And even if every citizen in the United States were allowed to “pack heat”, as I’ve heard it recommended (so that we can all protect ourselves in the moment from a crazy shooter on a rampage), I doubt very much that  I would do it. I would rather duck and run for cover, than take my chances with a gun. I would be far less safe with one, than without one — as would everyone around me. I know my limits. Handling firearms is strictly out of bounds for me.

As is being around other people who carry firearms on a regular basis. When I was younger, I ran with a kind of rough crowd. And some of them carried weapons of numerous types. I’m not sure if there were guns in the midst of us, but I wouldn’t be surprised. There were drug dealers and career criminals in my immediate social circle. At the time I was running around with those hell-raisers (and worse), I was often intoxicated, and when I wasn’t intoxicated, I was definitely impaired from the aftermath of some chemical ingestion. Plus, I had a lot of unresolved TBI injuries to deal with. It wasn’t good.

Frankly, I count my blessings, these days, as I look around me and I see everything going so terribly wrong in so many ways. In my youth, I easily could have ended up like my friend’s nephew — dead after an inexplicable shooting. I could very well have had my life cut short, with my family wondering what went wrong… how they might have helped… and devastated by that inexplicable loss. Any of us could end up in that situation, really. These days, with the violence being so extreme and seemingly so random, it’s hard to know exactly how long any of us is going to make it.

But for now, for today, in this moment, I am alive. I am living, breathing, going to work on the train, and counting my incredible blessings. The world is going to sh*t in so many ways, and yet I’m still here. I’m still standing. I’m still going on with my life, to the best of my  God-given ability.

In the face of all that’s wrong, all that’s unfair, all that’s tragic and terrible and just friggin’ awful, perhaps the most exciting thing I can be is normal, boring, regular, and blessed with a delightfully uneventful life.

God bless, everyone. Stay safe.

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