Sense-Of-Self — what it costs us when we lose it

Here’s more from my ongoing writing about Restoring Your Sense-Of-Self After TBI

Having a fragmented Sense-Of-Self isn’t just troubling. It can be terrifying. How are you supposed to function in the world without the person you know yourself to be? How are you supposed to interact with friends, family, and strangers, if you can’t rely on the person you once were, to handle all of that? How are you supposed to function in the larger world, if all your usual reactions are gone without a trace… or just different enough that you’re never sure how you’re going to handle things? How are you going to keep a job? Pay the bills? Be the person other people need you to be?

If these issues persist over time, the cumulative results can be catastrophic. Because living your life as a stranger to yourself and having no reliable sense of who you are is more stressful than the average everyday person can imagine. It’s cumulative stress, too, each traumatic challenge producing stress reactions and hormonal overloads that never fully get cleared… one after another, the biochemical stress load builds up, the experience of stress itself produces yet more stress, and the trauma becomes entrenched. The brain becomes more wired to “kindle” (think of a pile of tinder catching fire – bursting into flame) and produces a trauma response, with each subsequent experience. And on any given day, there can be tens, if not hundreds, of these kinds of experiences. Small and large, they come and go, and they become so customary they feel like your “new normal”.

The trauma of traumatic brain injury doesn’t end with the cause of the brain injury itself, when you lose your Sense-Of-Self. It continues, non-stop, through the years in a brain-injured individual who has become a stranger to themself.

It’s no wonder that the numbers for long-term outcomes for brain injury (even so-called “mild” traumatic brain injury) tell such a dismal tale [citation needed]. Experts can’t seem to figure out why folks who experience a “mild” brain injury slide downhill and degenerate. It’s no mystery to me. Over time, without a clear sense of who you are and a confidence in what you can do, the very thing that makes it possible to get on with your life and engage with new situations – a solid Sense-Of-Self – is eroded like a canyon cut deep into the earth by a flowing river over millennia. The erosion doesn’t happen once. It happens over and over, each traumatic situation undercutting your confidence and adding to the mental and biochemical stress.

In my mind (and also in my experience), losing your Sense-Of-Self plays just as significant a part in traumatic brain injury’s impacts, as the Loss of Self. Losing your Self is confusing, disorienting, and sometimes disabling in those moments when you need to call up your Self’s abilities to deal with things. Losing your Sense-Of-Self, however, creates a far more pervasive sense of alienation and helplessness. It stops you from even attempting to reach down deep inside to find that part of yourSelf that will get you through any challenges you face. With a loss of Self, you’re impaired in the moment. With a lost Sense-Of-Self, you lose the will to even find out whether or not you have what it takes to rise to the occasion.

And it’s been my experience that restoring a stable and coherent Sense-Of-Self is in many ways as important as redefining the Self alone – if not moreso.

Why?

Because our Sense-Of-Self involves not only the brain and the mind, but the whole body. That fact is something that seems to get lost in brain injury recovery discussions. Everybody is narrowly focused on the mind and brain and what goes on inside your skull, as though that’s all that really matters.

But the body is more closely connected with the brain – and the mind – than folks like Descartes could ever imagine. To this day, there are still people who treat the contents of our skulls as separate from the rest of us. But in the past decades, we’ve learned how untrue and unfair this separation is. We know know that the body “keeps a record” of the traumas it experiences, and it creates biochemical reactions that respond to situations even before the conscious mind is aware. The body’s constant “dialogue” with the outside world – its split-second interpretation of a shadow approaching quickly from the left side of our peripheral vision as “friend” or “foe”, and the chemical messages it sends to our brains about how we should react to this approaching shadow, set the stage for our whole experience. We don’t even have to think, to figure out if the shadow is a lover or an adversary. Our bodies’ subconscious processes and directions to our brains take care of much of that processing up front.

When the whole body is involved in your lived experience (as it will always be), it affects your brain in significant ways that can precede conscious thought and hijack your best intentions even before you realize it’s happening. In fact, that’s how we’re built. The problem arises, when we have one bad experience after another – threat, confusion, helplessness, frustration – and our bodies get in the habit of kicking off a fight-flight response to every situation, no matter what the true nature of it. When your system is trained to go on the offensive as a defensive tactic against situations that seem threatening, you can find yourself blowing up over nothing. You can find yourself throwing, hitting, breaking things… getting into fistfights over a poorly chosen (or misunderstood) word… flying into a rage over what another driver did, and chasing them down the road in a fit of righteous anger… and eventually shutting down from overwhelm. It’s stressful. And because of the nature of it – involving a perceived threat to your existence, as well as elements of helplessness – it’s traumatic.

It’s also cumulative. If it never gets cleared out of our systems, it builds up and puts even more stress on our systems, which increases our sense of danger and threat and helplessness. The stress itself becomes traumatizing. And since cumulative stress has been shown to negatively impact the ability to learn and reason clearly, our thinking gets muddled and we rely more on our habits and training to interpret the world around us. Our training tells us the world is a dangerous place, and we are helpless to do anything but fight for our lives.

You see where the cycle is going? It doesn’t take much to see where it leads.

A compromised Sense-Of-Self, in my experience, produces exactly this kind of stress – traumatic stress. Not recognizing your Self, not trusting your Self to handle things, not knowing what to expect from your Self… all that puts you on edge in ways that don’t make logical sense. And unless you’re trained in mind-body techniques that attune your mind’s awareness with your physiological state and manage what you do with your physical sense of the world, that edginess gets entrenched and can be extremely difficult to dislodge. It “takes up space” in your experience… far outside the reach of conscious awareness. It’s there, but it’s just out of range of conscious detection. And all the while, it puts considerable pressure on the inner wiring / chemistry of the body, as well as the parts of the brain which are devoted to learning and overall functioning in your private and public life.

So, while brain injury is usually thought of in terms of what happens inside the skull, we don’t dare forget the injury that happens both inside and outside the skull. The injury doesn’t just happen when you get clunked in the head. It continues to happen, for as long as you don’t recognize your Self, and as long as you become less and less familiar with the person you now are… compared to the person you used to be.

So, just as the Self is the person we recognize as “who we are”, our SenseOf-Self is a “felt sense” we have of the Self that is comfortable, confident, and put at ease by the predictability of how we express our Self. That familiar feeling reinforces our understanding of who we are, when we experience our Self behaving predictably in various situations.

And that Sense-Of-Self plays a critical role in allowing us to fully express who and what we understand ourselves to be. Our Sense-Of-Self makes it possible for us to step forward into life with confidence and self-awareness. In fact, unless we have a solid Sense-Of-Self, we cannot rely on our self-awareness. Or self-confidence. Or any other sort of self-possession. We have to believe in our unconscious minds, in our pre-conscious processing, that we will be able to have or produce a certain kind of outcome or result, when we take a certain action. We have to feel confident about what we believe we’ll be able to effect, and even if things turn out differently than expected or planned, we need to have a deeper understanding of who and what we are, in order to learn and adjust.

When you’re dealing with life through the eyes of someone with a fragmented Sense-Of-Self, you can never know – for sure – what will come of your attempts. You have been trained, through one failure after another, that you cannot trust the Self you think you once had. You cannot even trust the memory of the Self you believe you once were. You have no way of knowing, for certain, if anything will actually work for you, if you try. You’ve had too many experiences with failure, too many confidence-shaking and unwelcome surprises, too many expressions of shock or dismay from others who expect you to be one way, then turn out to be another.

So, why even bother?

Why indeed?

Yes, Sense-Of-Self matters when you’re recovering from TBI. It matters very much.

Losing your Sense-Of-Self Is the Worst

Take a long look at this image… then read what is below it. At the end, without looking at this image again, draw it on piece of paper.

Memory Test Image - study it, then draw it from memory later
Memory Test Image – study it, then draw it from memory later

I’ve written before about restoring a lost Sense-Of-Self, and I really feel drawn to do so again. As a matter of fact, I never fully completed the work I started, some time back.

When was it? A year ago? It could be.

Well, at least I am coming back to it.

Here are some of my thoughts from the section I’m working on:

And What About Sense-Of-Self?

The Self alone is not the only thing that can get lost after TBI. Along with the Loss of Self, there’s the Loss of your Sense-Of-Self1.

Your Sense-Of-Self is that level of comfort you have with yourself. It’s how comfortable you feel in your own skin. It’s the sense you have of being “in your proper place” that gives you confidence and security. It’s a very physical sense, a visceral sensation, that sets the stage for what our mind thinks about our surroundings. Our sense tells us if we’re safe, if we’re competent, if we are up to handling the world around us.

If your Sense-Of-Self is disrupted, nothing feels safe. Nothing feels familiar. You may recognize your surroundings, but they don’t feel the same. You don’t feel the same. And because you don’t have a consistent sense of yourself in your surroundings, it sets off all sorts of alarm bells that you are not safe. IT IS NOT SAFE. Cue the fight-flight-freeze response. Cue the adrenaline rush. You’re on edge… often for reasons you cannot detect or determine. Something just doesn’t feel right. And that “something” is you.

As I discussed earlier, the “Self” is the part of us that keeps reliably showing up. It’s the part of us that we recognize as uniquely us, which sets us apart from everyone else, and feels familiar and comfortable on a deep, fundamental level. It’s who we are — and who we can expect ourselves to be in the course of everyday life. And our Sense-Of-Self is the level of physical, mental, emotional, and spiritual comfort we feel with this familiar Self. Our Sense-Of-Self is the underlying foundation of confidence we have in living in our own skin, and our level of surety we have in what we believe we will do under different circumstances. In many ways, the Sense-Of-Self is our safety net that allows us to walk into unfamiliar situations with the confidence that we will “just know” how to handle conditions we may have not encountered before. We’re solid in who we know ourselves to be. We have faith in our Sense-Of-Self. We can depend on the person we have become over the course of our lives, to do the kinds of things we expect in even the most challenging situations.

And when that Sense-Of-Self is damaged, all hell breaks loose. Literally. Not only do we not know who we are anymore, but we also have no one to reliably depend on to make the right decisions and take the right actions in the future. We watch ourselves doing things and handling situations in ways that we never would have handled them before. We hear ourselves saying things that don’t “sound like us” and that seem to be coming out of a stranger’s mouth. We witness the internal reactions to things that never used to faze us before – we explode inside, when we drop a spoon… we get tied up in knots when we can’t understand what someone is saying to us… we get bent out of shape over little things that we rationally know should not be bothering us… we weep bitter tears for hours over things that other people take in stride. All of these experiences tell us that we’re living in a stranger’s life, and the person we once were – who we worked so hard to become – has abandoned us to the world and left an idiot it their place.

And that idiot keeps screwing everything up.

Our Sense-Of-Self becomes damaged… fragmented… shattered. Over time, one experience after another of watching yourself behave like a stranger undercuts the most basic foundations of our confidence, and erodes all the assumptions and knowledge we’ve built up about ourselves in the course of a lifetime. Your best friend and longest companion – the person you once knew yourself to be – has deserted you without a trace.

1The hyphens are mine, because I am treating the sense as a distinct thing in itself

That’s part of it, anyway. There’s more to come.

I just need to collect myself and get ready for my next Big Adventure.

. . .

Okay, now remember the image at the top of the page? Maybe, maybe not… Get your paper and pen / pencil and draw what you recall it looking like.

Making the most of everything you’ve got

It happens

So, you hit a rough patch. Maybe you literally hit something. Or it hit you. Or someone hit you. Or you got roughed up in some other way by this thing called Life.

It’s not fair. And it’s not fun.

No doubt about it.

And now you’re left feeling like you’re damaged. Broken. Down. For the count, or permanently.

I’m not going to give you a think-positive pep talk and lecture you on happiness being a “choice”. I heard a conversation like that yesterday while I was waiting for my turn at the chiropractor. Someone in the waiting room was depressed — really struggling with that wretched sense that comes with depression — and one of the other patients (who apparently helps others with alternative healing modalities) started in on this lecture about how you have a choice between depression and happiness. You can choose to take action, or you can choose to “wallow” – not in those words exactly, but that was the gist I got.

I kept my comments to myself. I was busy reading an eBook about neuroplasticity, which was far more useful to me. And I did keep my eyes from rolling, as the person trying to help started in on this (seemingly) oversimplified explanation about a technique that supposedly helps “break up old patterns”. But it got my blood boiling a little bit, hearing all the platitudes that they picked up along the way in who-knows-how-many Saturday morning workshops about all these different modalities.

I managed to put it out of my mind after that. I’m just now remembering it.

And I think about all the folks in the world who struggle with some hidden difficulty of one kind or another… who are just so beaten down by it, without a lot of fresh ideas about how to get past it, or manage it. The last thing I want to do is add to the heap of suffering by waxing eloquent about how choice trumps everything, we make our entire world with our thoughts, we manifest the lessons we need, etc. There is some truth to that, but some days, life just roughs you up and you have to work with what you have.

When you’re just trying to stay functional, all that talk is like serving goose liver pate to someone who hasn’t eaten in a month. It can seriously screw them up, when all they really need is some basic nutrition, eaten slowly, so the digestive system has a chance to catch up with itself. If you go too fast, or the food isn’t right, you can do harm.

Not to mention it can sound pretty uncompassionate and clueless about the true nature of certain brands of suffering.

Anyway, enough complaining about that. In my own life, there have been plenty of ups and downs. Bumps in the road. Sinkholes, really. And I’ve spent a lot of time down in the pit. I don’t like to think about it nowadays, but I used to be intensely depressed. A lot. To the point of suicidal thoughts. I didn’t want to live anymore. There didn’t seem to be a point to anything at all. I felt useless and clueless and lost, and I had no idea what the true nature of my difficulties was.

It’s been several years since I felt the kind of desperation and despair that used to pull me down. The last time I seriously considered ending my life, was 3 or 4 years ago, when I found out some things about what was really going on in my marriage. There didn’t seem to be any point to continuing, because being a capable spouse with a loyal partner is a huge part of who I am and how I define myself. When I realized that things were not as I imagined, on both counts, I decided to drive out to a bridge within a day’s drive of me that spans a massive chasm with a river at the bottom. It’s not hard to climb up, and there’s a parking lot at one end, so I could just park my car, leave a note (or not), climb over the railing, and jump to the end of my suffering.

That’s the closest I’d been to actually killing myself, in over 20 years. Back when I was struggling after a couple of automobile accidents (I got rammed two times in the space of a year), I was so low, screwing up on different jobs, lost, dazed, disoriented… I was planning on killing myself by driving head-on into oncoming traffic. I had the location all picked out, not far from my home, where I knew traffic sped up and there was a blind corner that everyone flew around. The health and safety of others in the oncoming cars never occurred to me. I just wanted to end it. Fortunately, I got some help and found people who could help me before I could act on it, but that sense of just wanting everything to be over was very other-worldly. And if I hadn’t gotten the right help at the right time, I wouldn’t be writing this, right now.

Anyway, over the years, severe depression has followed me — often following TBIs… the “mild” kind, no less. The world dramatically under-estimates the impact of mild traumatic brain injuries, just calling them “concussions” and shrugging them off, like they did with those two soccer players in the FIFA Women’s World Cup. Because you can’t see what’s going on inside the skull, they think it’s not that big of a deal. If you can get back up and walk, you’re fine, apparently. And that mindset includes the folks who sustain the TBIs. Because our thinking is addled. Confused. Distorted. And we have about the worst judgment you could ask for — especially when it comes to making decisions about whether to play on, or not.

And for many of us, with all that confusion comes depression. Frustration. Despair. We just don’t know who we are or where we fit, anymore. Likewise, the people around us don’t understand who we are or where we fit, and because their own identities are tied up in their interaction with the person we used to be, they lose part of themselves, when we get hurt.

I believe that’s why so many people abandon folks with TBI — we are all so interconnected, that our identities are tied up in how the people around us are, so when those people change, we lose part of ourselves, as well. We don’t know who we are, anymore. It’s uncomfortable. It’s a scary thing. So, we drift away, rather than hanging in there and finding out who else we may all become, as our lives unfold.

Anyway, I realize I’m really going on, here. I started out wanting to say:

Life throws some tough punches, at times. So, what do we do with the aftermath?

I started this post wanting to explore the ways that we can use our own difficulties and suffering to reach out to others and help them. I guess maybe I am still saying that. Life is a challenge for so many, many people, regardless of how they look on the surface. And sometimes the folks who seem to have it the most “together” are the ones who are carrying the heaviest load of pain and isolation. There’s no isolation like having everyone around you believe — or expect — that everything is fine and cool, and you’re doing just fine… when you feel like you’re dying inside.

For me, it comes down to this — because I know how hard it can be, because I have stood at the brink of my own self-destruction, because I have been through fire after fire, struggled through so many seemingly impossible situations, and I’ve pieced things together for myself, even while the rest of the world refused to see what was going on with me (and still does, in fact)… it makes it all the more possible for me to accept others’ limitations and not jump to conclusions about how capable or “well” they are.

As someone dealing daily with hidden issues that I am either too proud or too busy or too confused to reveal and discuss with others (or even sometimes acknowledge), I can never be positive that the person across from me isn’t in the very same (or similar) situation. It could be, we’re both putting on a good show.

Knowing what I know makes it possible for me to hold my tongue and not lash out, when people are trying to be helpful (and doing a sort of bad job at it). It makes it possible for me to be patient with others who are “under-performing” or aren’t living up to my expectations. It makes it possible for me to see past the scars and disfigurement to see that there is really a person in there who is very likely smarter and more capable than I can imagine, and who has been dealt a rough hand they can’t help but play.

It also makes it possible for me to encourage others to expect more of themselves, to do more with themselves. Sometimes you just have to cut the B.S. and get on with it. There is no point in sitting around feeling sorry for yourself, when there is a whole world out there waiting. And while my experience makes me more patient in some ways, it makes me more IMpatient, in others. Because after all the crap I’ve been through, I know from personal experience just how much is possible, if we get the right information, really apply ourselves, and stop making lame excuses that are just meant to get us off the hook and relieve the pressure, rather than addressing root causes.

It’s a double-edged sword, but it’s a useful one.

And that’s all I will say for now.

Onward.

Giving up … and then digging in

And one day I’ll reap what I’ve sown

I trade off between giving up… and digging in again. It’s like the action of a piston — up and down, forward and backwards, alternating. AC/DC current. One day, I’m feeling great and I’m on top of the world. The next day, I’m down for the count.

I think this is really natural, actually. All of nature goes through cycles, and as long as it keeps going, it continues to mature and and grow. Evolve.

And I think back to earlier days, when I had no idea what was going on with me. All I knew was, nothing was working correctly. None of the words came out right, and no matter what I said or when I said it, I could find a way to insult or offend or provoke at least one person in my general vicinity.

So, I kept to myself and did a fantastic job of faking my way through interactions. I still do it, sometimes, when I am tired, or I’m just not in the mood to INTER-ACT with people. It wears me out, especially when my senses are out of synch.

Out of synch means I get tired. Getting tired means… I miss details. Missing details means I am having a conversation about something that no one else is talking about. So, I learned a long time ago to appear functional, while everything just flies by me. It’s easier that way. Lonely, but easier.

It’s easy to get defeated by all this. I feel like I am so far behind where I should/could be. My peers are leading full lives – adult lives – and I still feel like I’m making up for lost time. Playing catch-up. Again and again and again. I think I’m doing really well, and I am… then I hit a snag, and it feels like the bottom drops out.

What do I do? I can’t give up, I can’t give in. I have people depending on me. I tell myself that, because it’s true. But I have to tell myself that, because part of me doesn’t believe that anyone should depend on me for anything. But I get up and get out there and take it day by day, and something comes of it.

That something, however, is not for me. I do my part and make my contribution, but in the end, it’s not really for me. It’s for everyone else. It’s like I’m not even registering, some days. When the pain is intense, my feet are killing me, my knees and hips are full of shooting pains, and I can hardly move my head because my neck is seizing up… and my hands and wrists and elbows are all on fire… no, none of what I do is really for me. Nothing is for me. I might as well not even exist, is what it feels like, some days.

But because I play my part, and people depend on me, I keep on. I don’t even know what I would do with myself, if I didn’t have a job where people rely on me, and a spouse who is dependent on me. I don’t do a good job of keeping in touch with my family, and I’ve pissed off a lot of them by saying things they thought were “aggressive” or “mean”, when all I was doing was giving them my honest opinion. I have reputation in my family for being sharp-tongued and inconsiderate, but I honestly don’t realize till afterwards, what I did wrong. One of my siblings’ kids, who has been friends with me on Facebook and has befriended me, took offense at something I posted, and they got really upset with me — over something that I’d meant as a joke. Now that’s one more person I’ve alienated. One less connection I have. My family does not forgive. They hold grudges. There are people in my family who are holding 40-year grudges against me. It’s stupid, but it’s what they do.

Me? I don’t have the energy for that. Or the memory. That’s one good thing — I forget the crap and I can leave it behind me.

So, tomorrow is Monday, and I am back to work at my soon-to-be-over job. They depend on me there. They are upset I am leaving. It’s very strange, because to be perfectly honest, I never developed much of a connection with any of these people. But they seem to love me, so that’s good. It’s all one-sided. Everything is one-sided with me. That flat effect that they talk about with TBI… I have it. But I learned a long time ago to not show it. Not if I want to keep my job. Not if I want to be active in the world.

So, I act. I pretend. I do what others expect me to do, and that’s that. On my own time, I read, I write, I hike. I watch videos about things that matter to me. I figure things out and come up with solutions for problems. And I try to catch up on my sleep.

I don’t care about Netflix. I don’t care about Amazon Prime. I don’t care about Groupon or sports or how “our” teams are doing against the world. I just don’t care. I can sit for hours in silence, just thinking. Or not thinking. Just sitting. All the activity in the world around me… it seems so pointless.

But I do it anyway, because that’s the price of membership. I go along and keep a low profile, meet the social obligations, then withdraw into my world. Where it is safe, and I am not misunderstood.

It’s not sad. It’s not depressing. It’s a relief. I’ve done it since I was young, and unless you do it yourself, it might not seem very healthy. But believe me, it’s the healthiest thing I can do.

To sort out the stimuli, the inputs, the constant barrage of details and facts and figures and whatnot.

To find myself again.

And take a break.

This was one of those weekends, when I was completely off the grid — well, just about. I spent a lot of time in the woods. And in bed. And on the computer, learning things that will be of use to me.

And I found another piece of myself this past weekend, that I’d been looking for — the piece of me that lights up at learning and putting a new idea in place.

What other people choose to do with their time and energy, is their business. I have my own way, and I have my own path. Much of it has more to do with others, than it has to do with me, but that’s my path.

Sometimes forgetting your Self is the best gift you can give your Self.

And then tomorrow, I will dig in again.

So, how can I incorporate this finding about gist reasoning in my own life?

Get it?

So, apparently, Gist Reasoning [is] Indicative of Daily Function in Traumatic Brain Injury. Check it out (bold emphasis is mine):

People with traumatic brain injury may have more difficulty with gist reasoning compared to traditional cognitive tests. This cognitive assessment may in turn be a clearer indicator of a person’s ability to succeed at a job or at home after injury.

A cognitive assessment developed by the Center for BrainHealth at the University of Texas, Dallas evaluates the number of gist-based ideas participants are able to extract from several complex texts. The test provides a more clear assessment of cognitive abilities for patients that are considered “normal” following traditional cognitive testing.

The study, published in the Journal of Clinical and Experimental Neuropsychology, included 70 adults aged 25 through 55, 30 of which had traumatic brain injury one year or longer prior to the study. The subjects went through a series of standard cognitive tests to assess memory, inhibition, and switching.

The group had similar IQ, reading comprehension, and speed of processing scores, however nearly 70% of the TBI subjects scored lower on gist reasoning than controls.  These decreased gist-reasoning scores correlated with self-reported difficulties at work and home. Additionally, cognitive tests alone predicted daily function with 45% accuracy, while the addition of gist-reasoning scores boosted accuracy to 58%.

The impairment of gist reasoning could reflect a loss of flexible and innovative thinking in patients with traumatic brain injury. 

Gist reasoning is the ability to “get the point” of something. It’s being able to extract the unimportant details from a narrative and figure out the salient / important / significant details… and the “get the gist” of the story.  It’s being able to look at a picture and tell what’s really going on — or what other people think is going on, so you can discuss with them.

Gist reasoning is turning out to be a better indicator of impairment after TBI / concussion, which is encouraging to me, because showing up for neuropsychological testing and being told, “Hey, you’re really smart in a lot of ways!” is hugely deflating when you’re struggling with day-to-day issues. Knowing you’re smart just rubs it in, and it makes you feel even more lame and damaged. But being able to measure gist reasoning and see that there’s significant impairment in that… now that’s something to sit up and pay attention to.

After reading about the Center for Brain Health’s published research on improving TBI recovery with certain types of brain training, I’m wondering how I can incorporate that into my own life and ongoing recovery.

My own test results, with two passes divided by 4-5 years of active rehab work, show that I’m way smart in some areas, but I struggle in a few respects. And in 5 of 6 areas of deficit, my deficits have not changed significantly. I guess that’s where Muriel Lezak would say I have not recovered.

On the other hand, the area where I have changed, is how well I’m living my life. And that’s what really matters to me. That, to me, is what recovery is all about, not reversing deficits which would probably change over the course of my life, anyway(!)

I can still tell I’m slower than before. I can still tell I struggle with many things, including fatigue and irritability and fogginess. But these things aren’t wrecking me, the way they used to.

I still need to work at things on a daily basis. And I need help, here and there — although I’ve learned how to behave in a way that doesn’t look like I’m disabled and in need of assistance. I still struggle with things that “should” be easy for me, but haven’t gotten that way — if anything, some of them have gotten harder. Getting going on things can be a huge challenge, when I’m not motivated. And stopping things that I need to stop, to do other things I need to do (like stopping surfing the web in the morning so I can get to work on time), is as hard as ever — maybe harder. My memory is still Swiss-cheesey — especially when I’m tired. And although my temper has calmed down immensely in the past 7 years, I still have my moments, when I just Go Off the rails. Likewise with emotions like sadness and  despair.  I generally keep those in check, because I can go down a rabbit hole that is terribly difficult to pull out of.

I think those times when I am less effective, are when I am overwhelmed by everything that seems important. And I think — from just a cursory reading of literature — that has to do with my “gist reasoning”, or my ability to pick out the salient / important / significant details from a situation and focus on them.

I’ve been doing a bunch of online research about the SMART training that the Center for Brain Health does, and I found that they’ve actually patented it (thank you Google patent search). If this is indeed intellectual property, and it’s controlled by them, then it’s more valuable to them in terms of money and quality control, than it is to the general populace.

And telling everyone Woo Hoo! You Can Recover From TBI With Our System! … only to say, “Oh yeah, it’s proprietary… but you can visit us and get training here — or at another one of our approved affiliates”… well, now I’m less elated.

Yes, it’s hugely encouraging and motivating to see their research that it’s possible. The thing is, it’s equally out of reach. I am not within easy striking distance of Dallas, TX, nor do I have the time and the money to take 8 weeks to retrain myself on the Strategic Memory and Reasoning Training© (SMART©) program.

Oh, well.

Not that this is going to stop me trying to employ their techniques, however. I’m crafty that way, and because I’ve always been on the fringes of the medical/rehab establishment (first because of lack of information in the world I grew up in, and later due to lack of money and resources and my diminished ability to communicate with healthcare providers, thanks to a slew of unaddressed issues)… I’ve had to take a lot of my recovery into my own hands.

Of course, it helps to have access to a competent neuropsychologist to consult with on a weekly basis, but even they are a bit flabbergasted at my recovery. They say they’ve “never seen anything like it.” Woot.

So, yeah. I think I’ve got an approach that works for me – and it may work for others.

I’m going to be doing more research over the coming week and see if I can’t come up with some practice exercises for myself and others to use to improve gist reasoning. I mean, how hard can it be? It seems really fundamental to me — it’s just been hidden behind all the Wizard Of Oz machinery of the medical establishment. Hidden in plain view, all this time.

How can I improve my gist reasoning? How can I strengthen my ability to screen out what doesn’t matter, in favor of what does — and move forward?

Figuring this out — I believe — will help me prioritize my activities better, help me determine the things that matter and the things that don’t, and help me stop wasting so much time on chasing distractions for the sake of distraction. I have a handful of projects I need to finish, and I’m hoping this will help me do just that.

This is going to be interesting.

Onward…!

Transformation: Benefits of mindfulness meditation for fellow head-injury survivors

Gold Mind Meditation Project or my life experience with TBI, for over thirty years now.

(Transformation: Benefits for fellow head-injury survivors) By Had Walmer

Brain-injury is an invisible disability, not easily noticed from the outside like a wheelchair or crutches. It’s a complex injury to the our brain and associated neurosensory systems. Known profoundly from inside each survivor experiences a unique array of symptoms. Gold Mind Meditation Project empowers you to transform your relationship with this changed condition and actually thrive in life through learning the Power of Mindfulness.

I speak from personal experience. Returning to college years ago, I was involved in a serious car accident. Jaws-Of-Life were required to free me from the vehicle. I got a skull fracture and was in coma for seven days. My brain swelled in my skull causing much secondary damage after the crash impact. When I came to I had severe traumatic brain injury (TBI), diplopia (double-vision) and amnesia. In an instant I was not who I used to be.

Since that time I’ve lived with continuing challenges of TBI. I struggled to complete my university degree and to get on with my life. I graduated from the university and then within a few years experienced frustrating failure in the loss of several jobs due to cognitive deficits:
weak learning and memory, poor boundaries and speech pathology. Often my perceptions were very cloudy – I was very unaware of what I could do or be. My friend who is an Occupational Therapist pointed out that this condition was the direct result of TBI, what TBI is, and that I can actually have a powerful say in the process and success of my rehabilitation.

TBI has often been misdiagnosed and thus poorly treated. In expensive and top-of-the-line rehabilitation programs I learned of my ‘cognitive-deficits’ and ‘compensatory coping-strategies’ for those deficits. These strategies are well-intended rehab but fell short of knowing and actually addressing the best possible well-being for me. I had to learn this inner transformation for myself. In my own explorations I have learned to sift gold (possibilities) from the gravel of my life experiences in order to find meaning, value and purpose for myself. Mindfulness Meditation is the key, learning to be brightly alive and awake in the present moment.

I’ve learned the meditation practice called Insight Meditation. Regular practice helps me be concentrated and focused, capable of sustained attention to chosen activities and to hold said purpose in mind. With Mindfulness practice we take a stand for our inner wellness, solidly at peace beyond the damages of our trauma and change. This is a path of being at peace with and authentic in your life, now. You can be ready to pick up whatever is next in your life path, with greater ease and joy, skillfully. You will get back benefits in proportion to the time that you put into the practice of mindfulness mediation, empowered to strongly face challenges.

Mindfulness practice can lead to brain healing (‘neuroplasticity’- the brain can heal itself). I am now choosing to live my life intentionally and more skillfully – making peace with this malady and finding the healing I need with present moment awareness. You can do this too. This is the start of a new path for you! Being calm and clear – activating your mind’s inherent strengths. Loving the life you live now.  Really!
Had C. Walmer hwalmer@gmail.com (503)332-3046

Work makes it worth it

Time to dig in
Time to dig in

I’ve been going-going-going for the past five days, and today is another going-going-going day. I’ve got a lot to fit into my hours, and nothing will wait. It’s just one of those times.

I feel like I’m coming down with a bit of a cold, so I have to take care of myself. I’ve been around a lot of different types of people, over the past days, and some of them have been sick – as in, sneezing-hacking-coughing sick.

No fun.

Also, at the height of the craziness over the weekend, I forgot to take my vitamins, so I can’t imagine that helped. I usually take Vitamin D, B-Complex, B-12, Calcium-Magnesium (it combines well with the D), and Vitamin E. But for several days, I didn’t take them. And on top of that, I ate food that I know I’m allergic to, which did not help. I usually get sick when I eat dairy, and although it’s been a few days since I had that cheese pizza (which was an incredibly bad idea) I’m still feeling the effects.

Anyway, I’ve got a lot going on these days – including my upcoming neurologist appointment on Tuesday May 5. I finally got an appointment. I need to gather my notes about my symptoms to discuss. It’s hard to know which ones matter, and which ones don’t, and I’m not sure how much detail to give. I’ll pull together high points to review, and discuss from there, I guess.

I have never had much success with doctors before. The neurologists I saw in the past were almost deliberately difficult, as though I was suspect from the start. I present well, and nobody really can tell how much difficulty I’m having, so I’ve gotten to the point of not even bothering to try to explain myself or communicate what I’m experiencing to others.

The one exception to this is with my writing. I guess I’ve  just been doing it so long, that I’m able to get more across in the written word. At least, it feels that way to me. Too bad my doctors don’t/won’t read what I have to say. There’s a lot of nuance in my situation, a lot of fluidly, shifting conditions that come and go and aren’t easily controlled with a pill or a shot. It’s subtle and it’s confusing and it changes without warning, at times.

So, what good can modern medicine / healthcare – so hurried, so oversimplified, so formula-driven – possibly do me? … Well, imaging, for one. A doctor can order a scan that will speak volumes about my situation — will it kill me, or won’t it? … But beyond that,

Talking things through with a doctor — including my neuropsych — is another story. The words just don’t get through. Which worries me and puts me on edge about this upcoming appointment in about 2 weeks. Is anything that I say going to make sense? And are they going to believe me, when I tell them what my experience is like? Will they dismiss me, like so many others? Will my time with them be wasted… and the whole thing turns into another “diagnostic adventure” that quickly devolves to a medical boondoggle?

Well, whatever happens, the bottom line is, it’s not the end of the world. If it turns out to be not-so-helpful, I’ll just walk away and get on with my life and find other ways to handle things. I have bigger issues to deal with, besides medical ones.

The main one being Work. It’s quite the roller-coaster at work, these days, with tons of uncertainty. But my Work is keeping me grounded and sane. The projects I have going are really shaping up nicely, and it’s keeping me engaged on a level I need to be engaged.

I had gotten really bogged down in other people’s “stuff” at work, but this past week has shown me that I don’t need to get stuck in what bothers them. What gets my imagination going and keeps my spirits up, is what I should be “stuck” in. Focusing on the Work I do, for its own sake, is really liberating. When I focus on doing my tasks at work, as though they are part of my own business, and as though they are taking me towards something bigger and better, it makes it all tolerable. The difficulties I go through are training for later — because sure as anything, there’s no way my life is going to get a whole lot simpler, any time soon.

So, I might as well get used to handling all the excitement.

Anyway, that’s the thought for the day — Work, in and of itself, is what truly gets me going, and it’s there that I can (and will) keep my focus today.

Onward.

The long, slow road back from TBI

Making my way along this road … as best as I can

Last night, everything kind of caught up with me. For some reason, I was so desperately sad and felt like I was giving up. I don’t know where that “came from” — I had a pretty good weekend, and I took it easy, did things I wanted to do, and I got a couple of much-needed naps in.

But by Sunday night, I was just so sad… feeling washed up, small and vulnerable. And I wept inexplicable, bitter, mournful tears for some time, before I finally went to sleep.

One of the things that pulled me down was actually a good new development in my life – cutting out all the busy-ness to keep my mind and attention occupied. I have used the stress of loading up on tons of projects to not think about the pain I’m in… get my mind off the confusion I feel… give myself some direction and hope for the future. Over the past week, I have realized just how fruitless this approach ultimately is. It actually keeps me from completing anything, and the purpose of it is not to accomplish, but rather to keep busy.

Some people use video games and Facebook to take the edge off their existential angst. I use projects.

And ultimately, we all come back to the same conclusion — everything ends, in the end, and we have nothing personally to show for it. Yes, we may make some amazing contribution to the world, but honestly, you never know how your work is going to impact anyone, and you never even know if people are going to really “get” what you’re doing.

So, for me, the only thing to do is focus on the present, what’s right here in front of me, and really soak it all up as best I can, so that my life experience is full and rich.

Reading that sentence I just wrote, it sounds like I’m giving up… that this “only thing” is a capitulation of sorts… a surrender to the anonymity and pointlessness of life. But it’s not that, actually. I may feel like I’m giving up inside, but this approach is actually the thing that can save me — it’s the thing that has saved me on this road to recovery. For all the different rehabilitation techniques used by professionals, it seems to me that the most useful and most important approach — which we can all use ourselves — is to pay intent, rapt attention to the world around us, really get involved with that world, and bring ourselves along with that attention.

There are a number of reasons I believe this works.

First, it trains you to pay attention.TBI makes you extremely distractable and vulnerable to overwhelm, so you have to build back the neural networks that make that possible. It doesn’t happen overnight, so you have to keep at it, keep trying it.

Some people meditate, which has been shown to really strengthen the brain in important ways. For me, sitting for long periods of time is both uncomfortable and cuts into the free time I have to do things I love to do (instead of what I have to do for my job), so I choose to focus on the amazing world around me, instead.

Second, it slows you down, which we all need to do,TBI or no.

Too much busy-ness makes us more prone to fight-flight tendencies, and that blocks our brain’s ability to learn. TBI recovery is all about re-teaching your brain to do things that used to come naturally, so if you can’t learn because you’re constantly marinating in adrenaline and cortisol and a bunch of other stress hormones, it will make your recovery more difficult.

Third, concentrating intently for periods of time on things that you enjoy watching (or love to do) develops new pathways in our brains.

You have to take frequent breaks, so you don’t wear yourself out and make things worse in the long run, but finding something that really grabs your attention and exploring that, experiencing it, and really getting into it, does wonders for an addled mind.

And last but never least, repeating those same activities at regular intervals makes those pathways permanent in ways that restore our Sense Of Self and make us feel like ourselves again.

The things we do over and over again — the thoughts we think, the feelings we feel, the activities we pursue — all make us what we are. They let us recognize ourselves over time. Repetition promotes familiarity and mastery. Mastery feels great. Feeling a sense of mastery and familiarity does wonders for your Sense Of Self, your self-confidence, your self-esteem.

Even something as simple as sitting still and watching the colors of the sky change during a sunrise or sunset, can bring you back to yourself. You just have to do it with all your heart and soul. And get plenty of rest in the process. It is a long and winding road, and you have to be careful that you don’t fall into the cracks and chasms along the way. You’re gonna fall in, now and then, but you can pull yourself out once more. That’s just how it goes with TBI recovery.

Or maybe any recovery, for that matter.

In the end, for all the advancements in rehabilitation and all the different approaches you can take to get yourself back, there’s nothing like just living your life and letting all the lessons sink in, to get you on down that road. There’s no guarantee that the road is ultimately going to be perfect. Life does what it will do. But we can definitely develop the skills to roll with it and handle it in ways that make us proud and happy and feeling — at least somewhat — like ourselves again.

“What are your goals for care, and how can I help you to get there?”

The road to recovery … long, winding, not always with an end in sight

This is the question just about every patient wishes their doctor or other healthcare provider(s) would ask them.

But they rarely – if ever – do.

I’ve never been asked this question myself, and I wish to high heaven I had been.

It would have gotten me thinking. And that would have been a good thing. Because it would have gotten me thinking about the right thing(s), from the get-go.

What did I want from care, and how did I want my healthcare provider(s) to help me get there?

I rarely, if ever, thought in such specific terms — partly because I didn’t have much past success with A) identifying goals, and B) achieving them. Outcomes were something general, something approximate, that amounted basically to “I just want to feel better,” without ever fully realizing what “better” meant, or how it would really feel to be that way. Expecially with TBI, everything was such a blur, such a source of confusion. But if you asked me a specific question and gave me something focused to react to… then I had a fighting chance.

More than 10 years after my last TBI, I can hardly believe what a difference an active recovery has made. It’s like night and day, compared to how I was before. Yes, I still have my issues, but now I know how to handle them, and they’re not as much of a killer as they were before.

There have been specific things that have helped me:

  1. Actually realizing that I was struggling with issues related to mild TBI.
  2. Learning about the details of those issues and understanding how they affected me each day.
  3. Actively working, each day, to come to terms with them, work through them, and learn to live better, a little bit at a time. Keeping notes. Or not keeping notes. Tracking the results of things I try, and trying again when things get screwed up.
  4. Having someone to talk to regularly about my life, focusing on my progress and positive experiences. Just practicing talking to someone on a regular basis — someone who is not in my immediate social circle, who is interested in the same sorts of things that I am — philosophy, quantum physics, human performance — that has been hugely helpful for me.
  5. Blogging about the things I have a hard time discussing out loud.

I’ve been looking back and past posts I’ve done, and it’s pretty amazing how much things have improved with me over the past seven years. I started blogging in earnest in 2008, and reading what I wrote then sounds like reading what a child wrote, years ago.

I guess I was a case of arrested development, back then. Really cut off from the world, by choice as well as by default. Overwhelmed. Unsure. On the defensive about, well, everything. On my own, in more ways than one.

Anyway, I seem to have veered away from my original topic — what healthcare providers could/should ask us about what we want and how they can help. I guess my point is really that through it all, I’ve had to help myself. And that hasn’t been all bad. I’m not sure my neuropsych or doctors have had a clue what was really going on with me in my experience. Whatever. I knew. And I dealt with it, when they couldn’t (or wouldn’t).

In any case, I’m a whole lot better now. Getting back to myself. Getting back my Sense Of Self. Slow going, but at least it’s going… Whether or not anyone is offering to help me in a professional capacity.

ON-ward.

Not for the faint of heart

The path must be there somewhere
The path must be there somewhere

I’ve been thinking a lot about my recovery, lately. What I lost to TBI, what I’ve gotten back, and where I go from here.

Scratch that. Yes, I’ve been thinking a lot about it, but thinking is not the point.

Living is.

Looking back at where I was, just a few years ago, it amazes me that I was as functional as I was. I mean, even just five years ago, I was grappling with all kinds of crap like intense mood swings that would completely wreck my day, and a ton of money troubles — creditors calling me constantly, threatening to take me to court — and some of them succeeding.

I landed in court at least twice (maybe three times?) that I can remember, and I totally screwed up one of the appearances, where I didn’t realize I needed to go into the actual courtroom. Even though I was sitting right outside, they logged me as a did-not-appear, which didn’t do much for my case.

Oh well. That’s over now. Don’t plan to go back there again.

Anyway, everything was so turned around, and it was literally all I could do, to keep up. I was in constant reaction-mode, constantly pushing, constantly fighting, constantly going against a grain of one kind or another. I was off my moorings, cut loose from the life I’d once known, and I was dealing with my spouse’s illness, as well.

All this, while having no real sense of who I was, or what I was about. I was on auto-pilot, just hacking my way through the weeds. And there didn’t seem to be a clear path.

To anywhere.

Now things are different. Very, very different. And I’m coming out of the jungle with a clearer view of where to go. It’s like I can actually see a path in front of me. It’s not ideal, but it’s still a path.

That's more like it
That’s more like it

And I’m still walking. Running, now and then. I’m also making progress, each and every day. I just need to make sure I get enough rest and good food, to keep going. That means real food, not a handful of candy and junk food at 3:00 in the afternoon. That sh*t will do me in.

Anyway, life goes on. I’m putting some distance between my past and present, and that’s giving me some needed perspective. I was so caught up in just getting through, so turned around, so uncertain about how to live my life.

All the things that had seemed so familiar to me — the old ways of thinking and doing and being seemed to be smashed to smithereens. From the simplest of activities like brushing my teeth and coming my hair in the morning, to making breakfast, to what I did for work each day… all of it morphed into something different and unrecognizable.

And it was really hell.

I think the hardest thing was losing my innate skill with little simple things, like being able to hold things without having to think about it. Dropping stuff all the time did a number on my self-confidence, and I couldn’t figure out how to get it all back. I just felt so stupid, so dumb, so inept. The simplest things were challenges for me, and I didn’t understand why they were hard for me.

That just stressed me out, and stress biochemistry does a number on your ability to learn.

More stress meant it took longer for me to re-learn, to re-train my body and brain, and it just prolonged everything. I didn’t understand the nature of my problems. All I could see was that I had those problems — or rather, they had me — and there didn’t seem to be any escaping it.

Now I know better, of course, but it’s been a long, hard road. And frankly, it’s sucked.

It was lonely. It still is lonely. Because nobody seems to understand what it’s like to actually lose your Sense-Of-Self. What it does to you. What it does to the people around you. How much it takes out of you, day in and day out, to have to reconstruct your life. I’ve rebuilt a huge amount of aspects of my life as I once knew it, but to be honest, I still know that I’m not the same person I used to be. And while I’m “close enough”, still…

I don’t feel the same way as I used to — about my life, about living my life, about, well, most things. And that loss of Self, that loss of the Sense of My Self, has been the hardest thing to overcome. I know how to rebuild. I know what it takes. But it’s still not easy, and most days, I’d rather not have to.

There’s a reason people don’t readily jump into finding out what it’s like to recover from a TBI. Or Concussion. Or stroke. Or brain aneurism. Or encephalitis. It scares the bejesus out of them to think that the brain can change as dramatically as that, and they just don’t want to think about it.

Some of us have to do this work. But it’s not for the faint of heart.