Bottom line, we need to feel good about ourselves. And others need to feel good about us, too. This need is not some hippie-dippy self-indulgence — it’s central to who we are and how fit (or don’t fit) in the world. It can be subtle and hidden deep within our unconscious, but it’s there. We have to have this feeling of goodness and rightness inside us, to some extent, or where will we find the reason to live fully? It’s not optional, it’s not elective. We must — to some extent — be able to feel good about something about ourselves. The Self wants to survive, but it needs a really good reason to thrive – both individually and collectively.
Now, the familiar (good) feeling can actually come from some pretty rotten behavior… or everyday routine… or truly noble actions. But in any case, the behavior needs to feel familiar and easy and fluid, in order to feel like US. That fluid, easy feeling is really the foundation of who we are and how we perceive ourselves, both in our lives and in the larger world. It’s the fuel that keeps us going. It’s made up from the sum total of rewards and consequences of our behavior and our interpretations of the meanings of our experiences as “good” or “bad”, “positive” or “negative”, as well as the rush (or deadening effect) that we get from all these things. This in turn determines the types of things we’re willing to do, and to what extent we’ll do them.
When your wiring gets crossed and you start behaving in ways that are unfamiliar to you, you can start to doubt yourself, and your source of motivation can get cut off. And if that source of motivation is cut off, even for a short time, it can jeopardize even the most hopeful recovery. The impact is felt not in just one single area, not a single limb or organ or idea, but in complex combination of ways of doing and being which weave together the very fabric of a person’s identity. Without coherence of that Self, without the certainty of Who You Are, things can start to slip and get lost, like sand carried in a bag made of thin gauze.
And that matters. Because if there’s one thing that everyone agrees on — experts and survivors alike — it’s that TBI can take a lot longer to heal than anyone expects. YouTube has plenty of videos from people who started out on their recovery 1000% determined to “beat this thing” by any means possible. And over time, they learned that they had a much longer way to go than they ever expected. It can be heart-breaking to watch their accounts and over time witness them gradually sinking into a state of resignation and defeat. All too often that happens. Because TBI takes time. More time than just about anyone suspects.
It also tends to happen differently than most people expect. I, myself, have often thought that I could “get back” to how I was before, if I just worked hard enough. But you know what? It doesn’t work quite the way I expected. The person I was before is gone. And funneling all my energy into “getting back to where I was before” is a losing battle that takes my attention and energy away from more productive activities, like finding out what other parts of my life I can develop fresh and new. I’ve struggled and battled and hassled over trying to restore certain functionality that I had in abundance before my last accident, but in doing that — which, ten years later, is still not working out — I have been missing out on other areas of my life I can develop which are really interesting and intriguing and offer me a chance to make a fresh start — a fresh start I’d been needing for some time, anyway.
Sometimes our old abilities return to some degree, but by its very nature, brain injury causes permanent damage on some level. The precise formation of our brain’s old familiar circuitry has been disrupted, so nothing works exactly the same anymore. We can rebuild similar connections in different ways, but once axons are sheared, chances are pretty good that they’re not going to be knitted back together exactly the way they once were. Sure, people may tell you that you’ve got a good chance for recovery, and that may be true. But with certain once-simple activities now being so hard, who can say if things will ever be exactly the same again? Chances are, they won’t. It’s like bending a metal pipe and then trying to restore it to its original shape — it can’t be done. Although the pipe may work fine, possibly even better than before, there will always be a little crimp in the metal that will never go back to its exact original structure.
At the start of our recovery, we may have thought (and said out loud to anyone who would listen), “I can beat this thing!” and believed it with our whole hearts. Everyone around us may have said the same thing. Chances are, we threw our whole Selves into the work, but when we realized that our old Selves were changed, and we didn’t have the same abilities as before, that “hit” to our identity pulled the rug out from under us. Suddenly, nothing works quite the same anymore. Some things are the same, others are different, but it’s impossible to tell just how different they’re going to be in the future – and when.
Surprises can come in many different shapes and forms.
You get up from your chair, and you start to fall over from vertigo.
You step outside on a bright sunny day, and you’re blinded by the sunlight that gives you a pounding headache for the rest of the week.
You hang out with friends at a pub, and you find that you can’t stand the sound of the jukebox. And that pint of beer hits you harder than it ever did before.
You start to argue with family members over “nothing” — and you end up weeping uncontrollably for hours with no idea why.
You get a good night’s sleep each night, but you still wake up exhausted, and you can barely function after four hours.
You talk to friends about things you know you should remember – they certainly do – but you can’t remember a thing. And when they walk away, 15 minutes later, you have no idea what you were discussing.
And each time you have these kinds of experiences, they’re just a little different from the last time. You never know how things will turn out – for good or for ill.
None of it makes sense. None of it seems real. None of it is like you used to be. But it’s how things are now. Except that it’s not. Next week it could be entirely different.
Even if you’ve been making good progress with logistical things — like getting up and preparing for work — and your progress has been steady, the continued feeling of unfamiliarity can make you doubt your progress, and undermine the determination which is so important for your continued improvement.
“Why is this still so hard?” you ask yourself. “Why am I not better yet?” You may actually be better, but it doesn’t feel that way. And nothing that anyone says to you can change your perception that you’re not better. You just don’t feel that way at all. Even if you can find a renewed purpose, you have to find new ways of pursuing it, and that work can be physically exhausting, emotionally depleting, depressing, and spiritually draining… which makes you doubt yourself, your worth, your ability to function as normal people in the world.
It’s particularly hard, if people around you are expecting you to “get back to normal” and be like your old self again. Your old self is gone-baby-gone, and nobody wants to hear your tales of woe about how hard it is to just keep going under the present circumstances. It may not be obvious on the surface that you’ve changed, but you can tell inside that something is different. Others can, too, though they can’t quite put a finger on it. And the added difficulty of having to re-think so many parts of your life can put a serious drain on your system.
What’s more, it puts a serious drain on your social connections.
When it comes to TBI recovery, there are very few elements more important than one’s connections with other people. We are by nature social creatures. Our brains are social organs. So much of what we do and are is geared towards interacting with other people, and when we’re denied or deprived of that interaction, disruptions and disorders can follow.
It’s my personal belief that much of the mental illness and logistical dysfunction that comes in the wake of TBI is rooted in social isolation… or a growing alienation from the world around us. TBI can make it next to impossible to work with others, or for others to work with us. Mood disruptions, unexpected outbursts, agitation, fatigue, difficulties paying attention and remembering what people are saying to us, all contribute to this, as do physical issues like light and noise sensitivities.
Plus, people who knew us before, may not be comfortable with us as we are now. Either our injury makes them nervous – it’s hit too close to home and they don’t want to think that it could ever happen to them. Or the way we are after our injury is different from what they expect – in subtle or obvious ways.
In some ways, it’s the subtle changes that make things hardest. We all develop our interactive repertoires with one another, largely due to unconscious cues like body language, inflection in our speaking tones, pacing in conversations, and minutely detailed connections we make which identify each other as “friend” or “foe”. When our way of being – the way we speak, the way we act, the way we move – becomes unfamiliar, we can unconsciously become “foe” to our former friends. It’s rarely conscious, but it happens. A lot.
The thing is, we need to be around people to get better. We need feedback from others to understand how well our strategies are working. We need to have models and examples to follow. We need people. And they need us. When we pull (or are pushed) away from social situations because of our difficulties, TBI survivors lose important opportunities to modify our behavior to become more functional, and recover from our injuries. And the people around us lose the opportunity to broaden their own worlds and perspectives.
If you don’t have a clear Sense-Of-Self, or your Sense-Of-Self is under constant revision, dealing with others can be very difficult. It puts you on edge, first of all, and that doesn’t help you interact productively with others. It also doesn’t give others much to work with. Interacting with someone who doesn’t know who they are, or who is constantly changing their mind and their mode of being, is a little like climbing up an icy hill. If a person doesn’t have clearly distinguishable unique characteristics — opinions, beliefs, tastes, thoughts, etc. — there’s nothing for other people to react to reliable, socially speaking. Thus, the interactions can get slippery.
And that all leads to more agitation, more irritation, more difficulty. You’re like a ship with a broken rudder tossed about in the stormy seas. You don’t have anything to guide you, anything to steer yourself in the right direction. And the same goes for them. If they don’t know who “you” are, they don’t have a clear sense of who your Self truly is, they have no way to reliably know if they’re being socially successful or not.
Not having a clear Sense-Of-Self is not much help at all.
It’s tough. Things are not as they once were. They’re different. We’re different. A part of us has died, and another part of us is being born. But we’re often so tied up in just handling the logistics of basic survival, that that gestation and birthing process isn’t immediately apparent to us. Who are we? Who can say?
And yes, that matters. Because TBI recovery is not a simple, straightforward path, which can be designed and predicted and carried out in just the same way with different people each time, with just the right results. The brain is involved. People are involved. The elusive quality of human experience is involved. All three are unpredictable, mysterious, and confounding in their own right. But a combination of all three? And under less-than-ideal circumstances?
If someone who’s trying to come back from TBI has no clear Sense-Of-Self, no clear mission, no coherent vision of themSelf and their place in the world, how can they be expected to continue with the ongoing work of trial-and-error recovery?
Now, I suppose it’s entirely possible to try to recover without having a clear Sense-Of-Self. You can flounder and flail around, take shot after shot at things that used to (and might still) matter to you, and try like crazy to make up for what you’ve lost. You can also rely on others to provide you with direction and tell you what should and should not matter to you, what you should and should not do. But if you have no true sense of who you are and what you’re about and what matters most to you, the fuel for that kind of activity is bound to run low, before long. There’s only so much help you can expect to get from outside.
And that’s a problem. Because if you’re involved in the long-term (sometimes life-long) work of building your life back after TBI, the one thing you’ll need is a reliable source of fuel. Motivation. Caring. Investment. Only the survivor can know what it’s like to be in their skin, dealing with their differences, and only they can take the actual steps to keep themselves going in the right direction. Without that inner fuel of a healthy and evolving Self-image, the inner AND outer work can’t get done. It might get started, but progress can remain elusive. It may even regress over time.
And that is why the Self matters. Because it’s what keeps us going through the long, sometimes difficult process of TBI recovery. Deep within, in that innermost seat of the soul, lie the seeds of recovery which need protecting and feeding and tending to sprout and grow strong. We’re not just talking about a single seasonal crop, either — we’re talking about ongoing growth, ongoing development, ongoing re-development of our abilities and understanding of our place in the world. In the center of the Self, we find the material of improvement, the fuel for the long journey which will never end, so long as we are living on this earth.
It’s the same for everyone — brain-injured or not. We all need healthy Selves, to be healthy humans. But for the brain-injured, especially, a healthy Sense-Of-Self is as critical to long-term healthy prospects as clean air and water, exercise, nutritious food, and the support of a caring community.