It’s wrong, wrong, wrong.
And it’s unethical.
Who has the right to deny brain injury survivors hope?
Now, granted, it makes no sense to set high expectations of a fast recovery. Getting back in the game within days after a concussion or mild TBI is not only unrealistic — it’s dangerous. We know about the biochemical cascade that happens in brain injury / concussion. We know that it takes weeks for the cells just to clear out the gunk that shouldn’t be there. We know that returning to work or play can have lasting repercussions. And we know that the brain needs time to normalize.
But if you take a measured approach that’s common sense and gives the brain time and opportunity to recover, progress is possible. In fact, it’s probable. “Progress” looks different for every single person, absolutely. And some abilities may never come back 100% — while other abilities that were never there before may emerge.
It’s wrong to set expectations that you cannot go back to having a full and rich life after a brain injury. We need to adapt, certainly, and we need to be absolutely honest about ourselves and where we fall short AND where we are getting strong, so we can continue to improve. But even if you have to adapt to some pretty significant issues, you can still build back a full and rich life of your own. A life to live. A life of purpose and meaning and a sense of belonging to something bigger than yourself.
My big argument with how I hear people talking about brain injury recovery and rehab, is that while they may be technically accurate about how the brain functions, they’re missing the biggest piece of the whole puzzle — the effect of brain injury on the person who’s been injured. The state of the human spirit, the Sense-Of-Self… that’s ignored. Yes, there are approaches to retraining through occupational therapy, speech therapy… a whole lot of therapies. And regaining your abilities, to whatever degree, is so important to restoring every bit of life you can experience.
But for so many of us, the real injury is what happens to our soul — our spirit — the part of us that makes us US. The part of us we recognize, that person we have come to know over a lifetime… The person whom we — and all our friends, family, co-workers — are comfortable living and interacting with… It’s the hurt to that part of us — our Self, our Sense-Of-Self — that is the greatest injury of all.
But does that ever get addressed? Maybe with people of faith who have a religious practice to turn to. Maybe with people who have a spiritual or meditation foundation. The thing is, brain injury can seriously disrupt that for us. I, for example, went from being a very “spiritually connected” individual who had a constant sense of being connected to everything, to having no religious or spiritual sense at all… and not even being able to fathom why anyone would. On the other hand, some people become very religious/spiritual after a brain injury. So, spiritual aspects can be tricky, and unreliable.
Religion and spiritual practice can do a pretty good job of helping with a loss of fundamental Sense-Of-Self. Especially with their rituals and routines. But not everybody has that to rely on. And not everybody can relate. That leaves a massive gaping hole in the puzzle of brain injury recovery that I haven’t seen addressed in a systematic, deliberate fashion. Here and there, we’ve got studies and papers about the subjective experience of brain injury. But how do you compose a research paper on the Self? How indeed?
But it’s so, so important. And that’s what sets brain injury apart from other life-altering experiences. All those other life changes we go through … the lost jobs, the changes in fortune, the losses and wins, the inevitable shifts in our situation brought about by the march of time and life being what it is… unless we’re brain-injured when those changes happen, we can face the uphill climb before us as who we know ourselves to be, and we can fully participate in those changes with at least some confidence that we can make it through. Because we recognize ourselves. We know what to expect from ourselves. And when we have reactions to difficult things happening, they’re predictable, familiar, and they reinforce who we know ourselves to be.
Brain injury, on the other hand… that’s such a tough one, because at the same time that our circumstances have changed, our brains have changed, our personalities have shifted. And even the smallest alteration in how we experience things, how we react, how we understand our place and abilities in any given situation, can confuse and disorient us… sending us into a fight-flight tailspin that can take us out — along with everyone and everything around us. Rage erupts. Tears. Frustration. We throw things, break things, attack. Because we’re being attacked — or so it feels. Our very existence is in danger. Because we don’t know who we are.
It doesn’t just happen overnight, either. It can, certainly, but the real damage is cumulative. It builds up over time. One confusion after another, after another… one unexpected mess-up after another, after another… one missed cue, missed clue, misspoken word, misunderstood statement after another, after another after another… We can get to a point where we have no idea who we are, and we don’t know how to even begin to find that out again. And as our friends and family and trusted others become hopelessly confused and alienated and slowly drift away from us… weeks, months, years on down the line… we end up alone, confused, and often unable to understand why.
This is what comes to mind for me, these days, as I navigate all kinds of changes at work and at home. My job is not secure. Or maybe it is. I don’t know. Supposedly, they’re going to lay off thousands, when the time comes. Will I be one of those thousands? If it turns out great for me, due to this pending merger, then great. But I have no way of knowing if that’s what’s going to happen. I don’t even know if I want that to happen. I’m tired, to be honest. I’m tired of being positive and hopeful and pro-active and a team player. I really just want to remove myself from the world, curl up in my dark cave, sleep, and lick the wounds I got from going tooth-and-nail at the world.
But I can’t. That’s not like me, and I know it. After years and years of being confused and disoriented and turned around, I actually have rebuilt a durable, solid, predictable understanding of myself. I have a renewed Sense-Of-Self, like never before. This sense of knowing myself actually feels brand new for me, even though I used to be pretty darned sure of who I was, before I fell down those stairs and hit my head in 2004. And some days I don’t trust it. Even the feeling of familiarity feels unfamiliar to me – if that makes any sense.
Still and all, I’m willing to live with that unfamiliar familiarity. Because I’m getting used to it. And I recognize my reactions to situations that arise, even if they are confusing. I’ve gotten familiar with my confusion. I’ve gotten used to my disorientation. And I know what to do about it. For me, nowadays, brain injury recovery is not so much about having everything be the way it used to be (I used to feel that way), rather, it’s about developing the skills I need to just deal with whatever comes up, when it comes up.
Because it will.
The question is, will I be able to deal with it all?
After all these years of working at it, my answer is YES.
That gives me hope — and a whole lot of it. I hope it does for you, too.