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
DEBUNKING TEN MYTHS OF “RECOVERY”
~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.