TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury – Does Self Matter?

This is the third part in a multi-part exploration of sense of self and how it’s affected by traumatic brain injury. Read the previous section here. More to come…

The next question that comes to my mind with this “Self business” is if Self really matters. After all, it’s been pointed out by others on this blog, as well as in certain religions and philosophies, that the self doesn’t really matter, and in fact the most important goal in life is to do away with a sense of self and embrace the whole of life as illusion.

Now, that may be fine for some, and if that works for them, that’s great. But it’s not where I’m coming from. Self matters deeply to me, and it does to other folks I know who are overcoming difficulties in their own lives which challenge their sense of self. Everywhere I look, I encounter people who are struggling with understanding who they are in this dynamically changing world, what place they have in their re-organized increasingly global workplaces, who they are as they recover from life-threatening illness, and what their future holds as they go through life stage and career changes, lose loved-ones to sudden, unexpected death, and otherwise grow and develop as people.

For those dealing with TBI, especially, I think that sense of self is a critical ingredient in recovery. It might not seem like it, when you’re in the process of learning to walk and talk or just get through your day without melting down and screwing everything up. But I truly believe that Self does matter — and in ways that are crucial to the very processes of learning to walk and talk and get through your day without melting down and screwing everything up. The question of Self is not the domain of philosophers and chaplains alone. It’s not just some academic or theoretic path to wander down, when you don’t have anything more important to think about. It’s a core and central part of TBI recovery, and if it’s not properly tended to and rebuilt, that can have dire consequences for a survivor’s long-term prospects.

Self and our sense of who our Self is permeates every aspect of our lives. It’s unescapable, it’s ever-present, and even it its “broken” form (as it often appears when your identity is fractured after a traumatic brain injury) it plays a huge role in how we go about our lives and how we seek out meaningful and lasting change — for better or for worse.

Self matters, because it’s who we are. It’s how we define ourselves. It determines where we put our attention and our energy, and it gives us a sense of purpose and place in life. When you lose that, you lose a truckload of reason to go on — the very thing that can keep you going through the long, arduous work of recovery from TBI.

When you’re shaken by TBI, many of the old connections in our brains and our nervous system can get severed, frayed, damaged — some of them severely. (I’m peripherally including the central and atonomic nervous systems — spinal cord, too — because these are the delivery systems that transport the electrical impulses that guide our experiences and expressions of self.) In an instant, the systems that that used to make it easy to be who and what you are, just don’t work the way they used to. Noises that used to be fine, suddenly bother you. Sunlight that used to be so nice to see, is now a source of pain and suffering. Taste and smell and touch can be affected. Balance can be impacted — sometimes so severely, that you’re so busy trying to stay upright that you have a lot less bandwidth to pay attention to things like what people are saying to you, or the bigger picture beyond your immediate struggle to not throw up. Memory can either disappear or be so eroded, that you can’t carry on a full conversation with someone because you keep losing the train of the conversation. And fatigue… well, when you’ve got so little stamina that you can’t make it through the day without a four-hour nap, there’s not a whole lot of room for much else in your life, other than managing your energy and doing damage control.

Without warning, with TBI, we become someone different. The differences may be drastic and obvious, or maddeningly subtle and invisible to anyone but us. The changes may be immediate, and some of them may be gradual, sneaking up on you over time. But they do happen. Often without our control or say-so.

Suddenly, the old ways of doing and being in the world are no longer available to the extent they once were. Things that used to be easy and effortless become a chore and a struggle. Getting dressed in the morning becomes a trial by fire, with none of the steps seeming obvious. The kitchen where you fix your breakfast becomes an obstacle course, apparently designed to drive you crazy. Sometimes abilities that used to be second nature to us disappear entirely, seemingly never to return. The old “bad” habit of lying suddenly doesn’t work, and you can’t keep your story straight. You try to draw, but you have a hard time holding your pen, and you get so tired with the effort, you can’t finish anything you start. Your conversations with people you know and like turn into social minefields, with the constant threat of misunderstanding threatening to derail the relationships. The one-cool demeanor that you had under any and all conditions… well, that’s gone… seemingly forever. Driving during rush hour becomes a gauntlet from hell.

Little by little, these problems erode not only your self-confidence, but also your relationships with the rest of the world. People who are accustomed to dealing with one sort of person need to either accommodate a new person in your place, or they just quit dealing with you at all. As small failures baloon into bigger ones, your self-confidence is undermined even more, which can erode your relationships and functioning even more. The downward spiral becomes a self-fulfilling prophecy. And if you manage to figure out there’s a problem before it threatens to destroy your life, you’re one of the lucky ones.

With TBI, the once-known is now unknown, the once-familiar becomes strange (or disappears entirely), and challenges crop up where they “shouldn’t” be. And that deviation from the norm, that separation from the old familiar ways which tell us who and what we are, can be utterly devastating. When we lose our old, dependable fluidity and ease with the activities that once made us productive human beings who knew our place in the world, we literally lose our Selves. We no longer know exactly who we are, why we are alive, what our purpose in life is. The parts of ourselves that used to be so fluid and easy… that feeling of familiarity and ease, well, it’s gone. It needs to be rebuilt.

Now, many of the problem areas may be “fixable” to some extent. The brain is magically plastic, and it creates new connections and new wiring where it needs it. It’s known now (contrary to scientific prejudice of past decades), that the brain will “recruit” different parts of itself to do the job of parts that have been hurt or damaged. Our brains — and our spirits — are quite resourceful, that way. And as we now know, there is not only ONE part of the brain that does ONE thing at a time — areas for speech and language comprehension are a lot more distributed than we used to think. Plus, different people have different areas that handle the same sorts of functioning. Everyone is unique and different that way, and the brain’s substantial ability to recover and restore at least some of its functionality is nothing sort of miraculous.

The thing is, under these circumstances when the brain is trying to build back its lost functionality — irony of ironies — even more energy and focus is required. Going through the motions every day to make up the difference between then and now (and teach your brain to do things a little differently than before) so you can keep yourself on track takes a whole lot of energy and a whole lot of focus — just at the time when you have less energy and less focus than ever. Which, frankly, sucks. It’s one of the worst things about TBI — at the very time you need more resources, more time, more direction, more of just about everything… you have less.

On top of this, you may not even realize you need more energy and focus. All you know is, things aren’t going right. Things aren’t working out like they used to. You’re having trouble and you don’t understand why. In the face of unidentified difficulty, you can just keep going the same way as you did before, trying like crazy to get things right — and perhaps getting a little better each day — but running out of steam in the process, losing your focus and what cognitive capacity you have, and ending up on the business end of the cosmic cattle prod over and over and over and over and over and…

When you get stuck in that loop, even more fuel, more determination, more drive is called for. And you may in fact be getting better a little bit at a time — or even a whole lot, seemingly out of the blue. But regardless of your rate of improvement, you need to keep going. You need to keep up the level of effort required to get your brain back on track — and your life, too. TBI is a lifelong condition that demands continual, consistent mindfulness. It sounds a little exhausting, when I think about it, and maybe it is. But the alternative is the equivalent of wading mindlessly into a swamp filled with snakes and alligators with your iPod in hand, wearing earbuds with the volume turned up really loud, splashing around to the dance beat, while the ‘gators circle closer.

So, where do you find the inner resources to keep up your mindful vigilance? Where do you get that drive to keep going? From the Self, your individual identity, the core character of your soul. As I mentioned before, I believe that Self is a collection of unique traits and activities that are familiar to us, which we recognize as Who We Are. The familiar pieces are the parts of us that are easiest to express, the ones that require the least amount of work to do. The easier they are, the better they feel, the more we want to do them… and the more familiar they become through repetition, which makes them feel even better.

This “feeling good” need is not some hippie-dippy self-indulgence — it’s central to who we are and how we see ourselves fitting (or not fitting) in the world. It can be subtle and hidden beneath the surface in 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? It’s not optional, it’s not elective. We must — to some extent — be able to feel good about something about ourselves. The Self needs a really good reason to survive.

Now, the familiar (good) feeling can come from some pretty rotten behavior, or everyday routine, or truly noble actions. But in any case, it needs to feel familiar and easy and fuild. That feeling of ease and familiar fluidity is really the foundation of who we are and how we perceive ourselves. 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”, and 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 — experts and survivors alike — agree on, 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 still had a long way to go… much longer than they ever expected. It can be heart-breaking to watch their accounts and see 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? That’s pretty much 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, six 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 putting it back to its original shape — although the pipe may work fine, there will always be a little crimp in the metal there will never go back to its original structure.

At the start of our recovery, we may have thought (even said out loud to anyone who would listen), “I can beat this thing!” and believed it with our whole hearts. 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. Even if we’d been making good progress with logistical things — like getting up and ready for work — and our progress has been steady, the continued feeling of unfamiliarity can make us doubt our progress, and undermine the determination which is so important for our continued improvement.

“Why is this still so hard?” we might ask ourselves. “Why am I not better yet?” We may actually be better, but it doesn’t feel that way. And nothing that anyone says to us can change our perception that we’re not better. We just don’t feel that way at all. Even if we can find a renewed purpose, we have to find new ways of pursuing it, and that work can be physically exhausting, emotionally depleting, depressing, and spiritually draining… which makes us doubt ourselves, our worth, our ability to function as normal people in the world. It’s particularly hard, if people around us are expecting us to “get back to normal” and be like our old selves again. Our old selves are gone-baby-gone, and nobody wants to hear our 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 we’ve changed, but we can tell inside that something is different. And the added difficulty of having to re-think so many parts of our lives can put a serious drain on us.

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?

How indeed?

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 an internal 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.

Read: Part One ~ Part Two

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4 thoughts on “TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury – Does Self Matter?

  1. Hi BB,

    Good post. A sense of self is SO important – for everything, not just recovering from TBI. It is the ‘I’, the platform you direct your life from.

    In my own journey, I found this self didn’t just disappear, post-injury, it eroded over time as the ‘familiar became unfamiliar’ and tasks that had been simple became arduous, even impossible. It’s also interesting that TIME does have a lot to do with it. If you think you’re going to recover in two, three months (as I was told in the beginning), then it’s much easier to keep your psychic head down as it were, and assume that with discipline and patience, you’ll go back to being the person you were.

    I think the breaking point for me came after a year – realizing that this wouldn’t change, that it was permanent. That was a shock that took a long time to deal with.

    What I call The Fog has a huge effect. Possibly more than the shadow world of constant fatigue. They are related of course, but living in this constant muddle, never being quite present, can really wear down your sense of yourself. Finding your way out of the fog can be the greatest challenge of all.

    I heard this interview yesterday. Nothing ground-breaking, but interesting nonetheless:
    http://www.wnyc.org/shows/lopate/2011/jan/11/mira-bartok-her-memoir-em-memory-palaceem/

    T.

  2. Hey T –

    Thanks for the link. I’ll have a listen later today.

    Yeah, that time factor is really something, isn’t it. It always surprises me when I hear how people are given prognoses for recovery in a weeks/months timeframe. Certainly, many people do get back to regular functioning in that sort of timeframe, but I think it’s also helpful to let people know that if they don’t recover in that timeframe, it doesn’t mean there’s something wrong — they just need to revisit their recovery and readjust their expectations.

    Perhaps having a follow-up consult with the doc around the time when you’re *supposed* to be all better, to see if that’s what’s happening…

    The fog is a problem for me, as well. I don’t like to dwell on it, and I don’t like to let it get to me, but it’s a problem. I think for me it’s definitely related to fatigue, but it’s also related to overwhelm. The one time in the past six years that I didn’t feel foggy was during a time when I had cut back substantially on my working life, was putting in maybe 20-30 hours a week, and I had plenty of time to rest and relax and catch up on my sleep. I was eating better than I ever had (and have since), and I was really paying attention to the finer details of my life.

    Now that things are picking up for me, job-wise, and I’m more involved in a range of activities, both fatigue and the fog are factors I have to contend with continually. It seems at times that I have a clear choice between being as functional as my life requires, and being fully present and in command of all my faculties. Again, the paradox that the times when you need the most capability is the time when you actually have less to contributed.

    I don’t care much for that aspect of my life. But I soldier on. Just keep at it. I’m hoping that if I can at least keep myself moving along at an acceptable pace, I’ll eventually develop a good foundation for my future — get the money business in order, get the day-to-day in order, keep myself in decent fighting condition, and just build up some good social collateral with people around me.

    The goal, I guess, is getting to a place where I have developed enough good habits that I don’t have to constantly think through every single aspect of my life at every moment, so I have some bandwidth to relax — and I can take the edge off my life. And rest. Rebuilding takes so much time and energy… it’s crazy.

    All this is for a good cause, of course: having a life I can be happy with. But it takes a lot of work, a lot of energy, and that doesn’t help with the fuzziness, the pain, the agitation, the moods. I’m doing better in all these departments, but I can’t afford to lose sight of them as “background issues” that are (and may always be) there.

    It’s a process, of course, and a journey. I would love to say I’m used to all this and I’ve accepted it and I’m just living my life. But even though that’s all true to some extent, it’s still bothersome to me that this is even something I need to concern myself with.

    Oh, well. It’s always something…

    Cheers
    BB

  3. Epilepsy is not considered TBI although the sclerotic tissue may have been caused by a TBI with seizures an residual effect of TBI. My late diagnosed epilepsy was never responding to anticonvulsants with the aversive effect of an escalating number and length of seizure resulting in status epilepticus. Sure we duscussed the possibles of onset traumas suffered at diagnosis. The fall down a flight of stairs when two yrs of age was not good for my health. Having elementary school teachers write on my report cards that I was “…constantly daydreaming” and thought of as a behavioral problem because of this daydreaming business as a child in the ’60s just frosts my cookies now! I was solidly absence malling infront of all these adults but it took my daughter, at the ripe old age of 9 yrs, finding me convulsing in bed one morning in 1991, to call the EMS, unlock the front door for them, return to the bedroom and undress her convulsing mother, return to the front door to wait for the ambulance arrival to show them to her mother that was still convulsing, for my first witnessed and “diagnosed by a medical professional” seizure! When I came out of that seizure with an O2 mask on my face, my clothes off, in my own bedroom with a slew of men around my bed, I sat up, then shrank back and laid down grabbing the covers because I realised I was naked, then sat up again to demand to know what was happening in my bedroom! These men told me what happened and said I needed to see a medical doctor. All those Auras since childhood (seizures) were finally explained. By October of the year 2001 I was being worked up for epilepsy surgery. I was having over fifty seizures a day, could no longer work, drive, do much of anything. The doctor said, “you need to either build a casket or let us take out that part of your brain.” A no brainer situation! I do not know how to build a casket. I had most of my right mesial temporal lobe removed on 8/30/2002. I am partially blind, lost a little hearing, have left sided parasthesia, no longer have the ability to form long term memory. Those were the expected outcomes. I wrote my own rehab plan for that six and one-half hour operation and spent five days in the hospital. Went through a divorce at the same time. Started school four months later, was homeless within two years, became a politician and served ten thousand voters within four years, graduated with three degrees and international honors in 2010 and am in am residing in a new state today, ready to embark on my masters degree, all without a full brain, still having seizures now controlled for the most part, by anticonvulsants. Occassionally I have breakthrough seizures. I am fully brain disabled by my originating TBI, whether it was that fall, catching a football and running head first into a picnic table as a youth playing with the neighborhood boys. I know who I am. I am one heck of a 55 yr old woman that would do it all over again and will keep going! I love my life, it has evolved into many things I would never have imagined doing on my own without my disability. My disability has afforded me the ability to attempt many things, the wall-flower in me, would normally have shunned. Learning has been a challenge, but learning to suck my thumb as a baby was probably tough to stop, just to crawl on the floor. I did that too! I figure I can do this too! My brain is malleable, as was my daughter’s when raising her, as was my husband’s when rehabbing him from his strokes. My brain can do alot, if I give it time and the attention it deserves! I am worth it!! I know who I am, even if I don’t remember who I was, and that’s okay!!

  4. Well that’s intense. Going your whole life with those circumstances and not being able to get any answers (or even acknowledgement that something is up), until your 9 year-old daughter figures it out.

    Figures.

    People are funny — serious stuff can be happening in front of them, like your absence seizures as a kid, and they’ll make excuses for it. You’ll seize constantly for years… and the people around you will somehow be fine with it… and then when you start to put things together, all hell breaks loose and things fall apart?

    Strange. But you’re definitely not the only one. And a lot of us have to contend with people who either don’t get it, or make things even more difficult when we make it impossible for them to NOT get it.

    You’ve had quite a life, and quite the experiences. Very impressive, I have to say.

    Keep on keepin’ on – we’re rooting for you!

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