I haven’t been myself, for the past two days. I was on a business trip, this past week, and my flight got in late on Thursday night/Friday morning. Then I needed to start work early on Friday morning. I was hoping to sleep in on Saturday, but this morning I had another conference call at 8 a.m., so that was … fun.
Actually, it was a good experience to have. And I held up my end of the bargain on the conference call, validating some results of a software release that happened earlier that morning.
It turned out well, which is good. Because then I had to run out and do my errands. Take the trash to the dump. Gas up the car. Go out and buy some computer stuff to keep my equipment running smoothly. That went well, too. Then it was back home to do more errands and help my spouse get ready for an event they were organizing. Everything seemed to be going pretty well, and they got on the road at a decent hour.
I got a phone call about 90 minutes later, that I had forgotten to load one of their main pieces of equipment in the van. Both of us had spaced out and completely forgotten to load it. WTF?
I never do that. At least, I don’t do it much, lately. I used to space out a lot and lose track of stuff. Either that, or I’d be so keyed-up that I’d be on top of everything and wouldn’t forget anything. Hyper-organized ‘n’ all that. But lo and behold, tonight, I did the unthinkable — seriously, it was that out-of-character for me. Then again, I was going on 4.5 hours of sleep the night before, and I’d had a full day already, on a Saturday, no less.
So, I threw the equipment in the back of my car and drove like a bat out of hell to the event. Got there before it started, which was nothing short of miraculous. I hit almost all the lights exactly right — either they stayed green, or I snuck through while they were turning orange to red.
Mission accomplished. Embarrassing, but I got the equipment where it was supposed to be. And that’s really what matters. I spaced out, but I made it right.
Times like this, I just have to shake my head. I am not “myself”, lately. Not even remotely close. I’m over-tired, stressed from work, taxed and alternating between overwrought and indifferent. It’s very strange to be me, these days. I’m pretty swamped at work and at home, so I don’t always recognize myself and my reactions.
It’s worse when I’m tired.
A lot worse.
So, the best I can do, sometimes, is just hang in there, keep plugging away till I see a signpost along the way that makes sense to me… and follow that.
Just keep going.
Speaking of going, it’s time for me to go to bed. I’m behind about 5 hours of sleep, including the hour of sleep I lost last night. Always an adventure.
One of the things that puzzles many a healthcare practitioner and clinician about TBI / concussion, is the incidence of long-standing issues after the injury “should” be healed. For the vast majority of people who get clunked in the head and feel woozy (and/or out-of-it and/or uncoordinated and/or extremely moody) afterwards, healing comes within a few weeks.
But for a number of other people (like me), symptoms persist. And that’s a mystery. At least, for most folks.
To me, it’s really not much of a mystery, and I completely understand why people like me struggle and suffer from post-TBI symptoms. It has a lot to do with the stress that results after a brain injury (especially a “mild” one) that disrupts some fundamental functioning in your system. Having your brain work even just a little differently than before — especially if you were a high-performing individual before your injury — can be so profoundly disruptive to your daily functioning, that it freaks you out.
It’s not an obvious freak-out. It happens silently, behind the scenes, in the quiet of your own mind. It’s more of a feeling, really, than a tangible thing that others can see and hear and detect. It’s a mute welling up of trepidation… reservation… uncertainty… that happens over and over and over again, day in and day out. It throws you off. It disrupts your rhythm. And if you are accustomed to working at a brisk pace, doing demanding things all day, every day, that kind of disruption can be brutal.
It’s like being a piece of pottery on a throwing wheel. You’re accustomed to spinning fast, but you’re suddenly off-balance. And the results can get messy. If you’ve ever thrown pottery on a wheel, you know what I mean. The faster the wheel goes, the more it will be affected by being just a little bit off-balance.
Nothing throws you off like a “mild” TBI. A concussion is “just a bump on the head”, but it affects so many parts of our systems, that you’ll definitely feel it. And if you’re used to being always on-the-go, always active, always involved, always performing at a very high rate, even the slightest disruption to your functionality can be a real problem. It’s like a grain of sand that gets under the base of a lamp. When you pull the lamp across a wooden table, it can score the surface pretty badly. And if you do it often enough, it will do some serious damage to that table.
“Mild” TBI / concussion experiences are like little grains of sand in our systems. They shouldn’t be such a big deal. They really shouldn’t matter. They’re just little things — why would we get so bent out of shape about them?
But for those of us who have been top performers, even the slightest disruption can be unsettling. It’s stressful. And if you get unsettled often enough, the stress can build up, and it never really gets dealt with — because, after all, there’s no apparent reason we should be stressed from a “mild” injury, so why should we deal with it?
It’s cumulative. And it can become devastating. Your brain doesn’t quite understand what’s happening. Your system is getting increasingly more stressed, and yet it doesn’t know why that is. The biochemical sludge from ongoing stress keeps building up and accruing… and as a result, your entire system gets stressed and freaked out.
For no apparent reason.
And that’s crazy-making.
First, you can feel like you’re losing your mind, because something doesn’t seem right. Second, your stressed system is actually preventing the brain from healing up by re-learning and re-adjusting to the different ways it needs to do things. Third, you get no help at all, because very few people actually understand what the heck is really going on with you — and because your brain has been impacted, it’s extremely difficult to explain to others just what’s going on with you.
So, you’re sorta kinda screwed.
And you lose yourself. You lose your Sense-Of-Self. You don’t really recognize yourself anymore. You don’t feel familiar to yourself. Your thoughts feel like they’re someone else’s. Your life feels like it’s someone else’s. You don’t understand why you’re doing and saying the things you are — and if nobody has explained the mechanics of TBI to you, then you reallydon’t know why anything is happening the way it is.
The usual ways that you always functioned before are different. They are no longer familiar. They are no longer comfortable. The things that used to come second-nature … don’t. You have to think about so many things that used to come easily to you, that used to be reflexes. The patterns that you used to live by… they’ve evaporated into thin air. And you’re left on your own. To figure it out. On your own.
And so you’re walking around in a constant state of agitation and stress, because something’s not right, and you’re not getting the help or understanding you need. Your brain is laboring to make sense of things, but your biochemistry is conspiring against it, marinating it in a continuous bath of stress hormones and frustration. Your brain needs to learn and heal and retrain itself, but the stress is literally preventing that from happening. And you’re developing PTSD, for no apparent reason.
It was “just a bump on the head” so what’s the problem?
Eventually, it can get to the point where you don’t even recognize yourself, anymore. Nothing feels familiar, nothing feels sane, and you’re just faking your way through your days. Even the things you still do well, might not seem like you’re doing them at all. And the things that others believe you’re doing better than anyone else… well, that can feel like an act.
And all because of a mild injury that most people can get over in no time.
Personally, I feel that folks who are on the high-performance end of the spectrum are more likely to experience persistent problems after a concussion or mild TBI. Folks who aren’t highly tuned and highly sensitive aren’t necessarily going to notice changes to their subtle functions. But sensitized and high-performing people are. And unfortunately, not every doctor or clinician you have access to is one of the high performers who understands.
Worst of all, is when you deal with people who aren’t on the high-performance end of the spectrum, who tell you you’re “functional enough” and should just be happy to have what you’ve got. I’m sure they don’t realize it, but that’s about the coldest, most cruel thing you can say to someone who’s struggling with a loss of functionality after brain injury. I’ve been told that — directly and indirectly — countless times… either by clinician friends who tried to reassure me that I was “so smart”, as well as providers who told me that I should be happy that I’m not worse off, because so many people are.
Best case, they downplay your issues and try to build you up by making you comfortable with mediocrity.
Worst case, they accuse you of being greedy and dismiss you as either grandiose or narcissistic.
It’s lonely out there, when you’re used to performing in the high end of the spectrum, then get knocked down a bunch of levels by a TBI. And it’s so alienating and debilitating to never get the help you need to get back to a place where you simply feel comfortable with yourself again. It’s hard enough on the inside, but the conflicting messages from the outside make things even harder to sort out.
It’s taken me over 10 years of constant, constant, focused work, to get back to a place where I feel comfortable in my own skin. So many years were spent struggling with demons I couldn’t name, and certainly didn’t understand. I wish more clinicians and practitioners could understand the vital connection between changes to personal performance / experience and ongoing difficulties from mild TBI / concussion. It might help them A) better grasp the very real challenges we face, and B) help us get to a place where we recognize ourselves again.
Here’s hoping this can change. I’ll do what I can.
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A funny thing happened, when I was working on my TBI S.O.S. writing… Here, I was feeling really strong and certain, starting to feel like my old self again…
And then, all of a sudden, I wasn’t. I went through a period where I really lost touch with my identity all over again, and each day I woke up wondering, “Who the hell am I, and how did I get here?”
Any talk about regaining a sense-of-self after TBI seemed, well, ironic. And unfitting. It didn’t exactly ooze integrity, from my point of view.
I guess I still needed to learn a thing or two.
So, I had to step away. And do some more work in myself. And get myself back in shape… back to a place where I actually did feel like myself again… and feeling like I could actually talk about restoring a sense of myself in terms that were true and honest and genuine (not contrived and forced).
I thought I was in a good space, back in February. And I was ready to start writing some more. But then life happened, and I got caught up in the neuro stuff, so the Sense-Of-Self stuff took the back seat again. My sleeping habits got bad. I got too tired. I got too bent out of shape over things. I really wanted to write… but there were so many other concerns coming up, and I only have so much bandwidth.
It’s been a little while, now, and I’m actually feeling much more stable. I’ve worked a lot on my sleeping patterns, lately, and I’ve also gotten settled in at my job (while keeping an eye open for any new layoffs — supposedly there are some coming next week? who knows?). My schedule is steady. I have my tools in place. And I feel like I recognize myself when I get up in the morning, and when I look at my reflection at night as I brush my teeth before bed.
TBI is a strange little m*therf*cker of a chronic condition. It takes so much from us, it steals so much, it separates us from everything we love and hold dear… and it offers us absolutely no clue as to how to get back to where we want to be. Sometimes we can never get back to where we want to be, but we can find some peace in knowing we’re back to where others need us to be.
TBI can make us incredibly self-centered. We have to be, in a way, because we have to recondition ourselves to do so much, to re-adjust to changes in so many things we used to take for granted. How ironic that the one “cure” I’ve found for that sense of rootless confusion, has been to look away from my fanatical self-centeredness and put the focus on others and what they need. Ironically, when I put my selfish concerns aside, I actually find a sense of myself that is whole and wholesome — and helpful for others.
And that focus on others absolutely has to be about helping people understand the impact that a fractured Sense-Of-Self has on TBI survivors. It is absolutely positively central to the issues we have — and I firmly believe that that S-O-S condition is a key factor in PCS and other lingering after-effects of TBI. I believe it’s an important driver behind the stress that takes over so often after a brain injury, and I’m convinced that it — rather than any self-destructive tendency or even impaired risk assessment — is behind the behaviors that result in multiple concussions / mild TBIs that accumulate over the years.
I’ve watched my own fractured Sense-Of-Self play a pivotal role in my own poor behaviors and “flawed” decision-making. Some believed it was because I felt badly about myself or I didn’t respect myself, or I wanted to harm myself in some way.
On the contrary — I actually wanted to help myself, and risky behavior was the only way I could figure out how to get the pump of biochemical goodness that “brought me back to myself”. So long as we continue to ascribe “self-destructive” risk-taking behaviors to psychological wounds, rather than biochemical impulses, treatment for mild TBI and concussion sufferers will remain incomplete — and a self-fulfilling prophecy of poor long-term outcomes.
The loss of a Sense-Of-Self lies at the heart of so much suffering in TBI — both for those who have been injured, as well as their loved-ones and social circles.
And until we “get” that and start treating it directly, it will continue to be a problem.
I’ve been doing a lot of reading, lately. Now that I can read again — and remember what I’ve read beyond the space of a few pages — I’m just enjoying it so much. It’s awesome.
Anyway, one of the things that I keep coming across is how our brains are quite “plastic” — subject to change, based on need — and how different parts can be recruited to do the job for other parts that have been injured or damaged. Once upon a time, in a land not so far away, people believed that certain areas (and only those areas) took care of specific tasks. There was a “speech” area… “emotional arousal” area(s)… “motor control” area(s). And if they got injured, you were sh*t outa luck.
Now, of course, we know better. And we’ve found out that areas that aren’t supposed to have anything to do with speech or emotion or motor control, are actually pitching in to help out. In some cases, if a part of the brain is completely fried, other networks can jump in to take over (like the massive amount of damage done to the brain of a university professor, discussed in The Brain That Changes Itself — he re-learned how to walk and function, despite losing “all” his ability to coordinate movement, and he actually passed away from a heart attack while hiking in Peru).
So, even if there is substantial damage to a part of the brain, it still has the capacity to right itself and restore itself to functionality — some of which is about as good as before, and some of which is even better than before.
One of the things that bothers me about all the concussion discussion, these days, is that it focuses so intently on CTE and the potentially fatal results of mild traumatic brain injury. There’s a real atmosphere of critical concern — and rightly so. People suffer terribly and die miserable deaths, with their families suffering right along with them, thanks to the denial around repeat head trauma, particularly in the world of professional sports.
The thing is, CTE isn’t the only issue at stake. And while the potentially lethal effect of thousands of subconcussive and concussive hits is something to be reckoned with, all the intense & furious fear-vs-denial arguments are drowning out the rest of the conversation – about concussion and mild TBI as the rest of us experience it. And in the process, I worry that we’re not only sending the message to concussed kids and their parents that their lives could be in danger, but we’re neglecting talking about how to successfully recover from concussion / mild TBI.
After all, if we figure out how to recover from it successfully, then people might continue to bash their heads, thinking that they’ll just be able to fix them later.
In the words of that little old lady in the commercial, “That’s now how this works. That’s not how any of this works.”
There’s an awful lot of head trauma going on — there always has, and there always will be, so long as humans have heads — or we all get our consciousness transferred to robotic brains that don’t have the same organic vulnerabilities we do (that’s not something I ever want to do, but it will probably be an option, someday). Dealing with concussion / mild TBI is about more than preventing the injuries and doing immediate medical interventions. There’s a whole process involved in recovery. And a lot of that process involves reconnecting the parts of our brains and our lives that have gotten frayed or ruptured or otherwise broken.
See, the connections that get damaged are not just the ones in our brains. There’s also our social connections. And our connections with ourselves. Our brains are “central processing hubs” where information comes in, gets processed, and then directions are given for how to work with it. When our brains get injured, they don’t necessarily make the right connections — and some connections may even be lost. Our sensitivity to light and sound can change. Our coordination, which lets us interact with the physical world, can be changed. Our ability to hear or read and understand language can be changed. And our response time can be changed, as well.
It can be incredibly disorienting. And it can feel like the changes are permanent and will never get fixed. When you’re in the midst of your “acute” post-concussion phase, and everything is fuzzy and foggy and slowed-down, it’s hard to see past that initial fog bank. The thing to remember is that, with the brain — as with everything else in life — things change. Some things get better, some things get worse. The important thing is that we get involved in the change, ourselves, and do what we can to make it better — or at least more like how we want it to be.
This is not only possible, it’s probable.
We are in constant connection with the world around us — through our senses, through our interactions, through our very thoughts — and we were constantly adapting to our environment. So, to say that damage from a TBI / concussion is permanent is, well, not accurate. In fact, it’s completely INaccurate. Unless we are dead, our brains continue to change and adapt, based on what’s around us.
Our bodies don’t stop taking in sensations. Our nervous systems don’t stop transmitting stimuli to our brains. Our brains don’t stop taking in and interpreting that data. Granted, everything may work differently than before — in some cases, making us feel completely unrecognizable to ourselves, and making us behave like a different person around others. But the end of the story doesn’t come, until we draw our last breath.
As long as we’re alive, we’re connected — somehow — to life. To bring ourselves back from concussion / mild TBI, we need to foster our connections even more. And we need to come up with creative ways to do it. Because the rest of your brain is waiting for you to wake it up in new and novel ways, so it can do old (and new) things in a whole new way.
This is so, so important. We have got to keep sight of the hope and the possibility, even as the public discussion focuses on death and destruction. Yes, CTE is a real danger. Yes, repeat concussions can cause serious harm. Yes, people suffer and die from untreated TBI all the time. It’s a national issue and a national disgrace. The thing is, brain injury is not a death sentence — even repeat brain injuries, like I’ve experienced. People don’t have to stay broken after one, two (or, like me, 9+) concussions. People don’t have to accept a “new normal” of a permanently damaged life with no hope of joy left in their lives. They don’t have to stay isolated and alone, left to rot.
At the end of the day, I believe the key to overcoming TBI is connection — with others, with ourselves, with the sensations and activities of our daily lives that help re-knit the connections in our brains. There are things we can do to address our issues, things we can to do offset the initial damage that’s done. That localized damage may lasting, but it needn’t translate into permanent damage to the rest of our lives. Functionally, different parts of our systems can be trained to take on activities that some parts can’t do anymore. There’s nothing unusual or supernatural about that. It’s how we’re built. It’s how we are “fearfully and wonderfully made”.
What we do with that potential is up to us. What we do with our lives… that’s our choice.
One of the amazing things about the brain is that it has an uncanny ability to get what it needs in the short term, but which actually hurt you in the long-term.
After injury, it can push you to do things that will feed its immediate need, but the ultimate result is just not good.
Take stress, for example. And danger. And risk-taking activities. All those things look like either bad habits or a taste for self-destruction. But actually, it can be the brain seeking out the pump of energy it needs to function.
After TBI or concussion, the brain’s “tonic arousal” (its general level of wakefulness) can be negatively impacted. The brain is literally more “sleepy” and doesn’t respond as quickly as it once did. Many concussed folks complain of feeling slower than before their injury, and while there may be a number of different reasons for that, tonic arousal can be a big component.
The only problem is, stress and drama actually keep us from learning. The parts of our brain that need energy and information can be literally shut off, when we’re under extreme duress. And as a result, we can end up repeating the same stupid mistakes over and over again.
Because A) We haven’t had the chance to learn from our last mistakes, and
B) There’s a part of us that actually thrives on those stressful situations.
So, it’s a vicious cycle.
And it applies not only to folks with TBI and concussion, but also those with ADD/ADHD, PTSD, or other brain-related issues that slow them down. When you need to go faster, your brain will do what it needs to get its requirements met. The only problem is, over the long term, this can be… just a little disastrous.
No seed in the birdfeeder.
The hungry chickadees
are safe from the hunting hawk.
I know this short poem doesn’t meet the requirements for haiku – it has too many syllables.
But it says what I need it to, in 3 lines.
When the birdfeeder has seed in it, the hawk comes and picks off the chickadees who feed at it. It’s amazing and terrible. I haven’t been able to fix the feeder since I took it down to keep the squirrels off it. I still need to put it back, but it’s a multi-step process, and I’m too tired, these days, to do much about it. Maybe this weekend I will fix it.
Much of my passion is gone – that fiery Will To Do has tempered. Maybe it’s age. Maybe it’s wisdom. Maybe it’s perspective. It seems more like confusion to me.
Before my 2004 tbi, I had so much enthusiasm and passion for life. Then everything fell apart, and my passion was replaced by rage.
Now, I’m more happy to have nothing “going on”. Passion and enthusiasm get me turned around and confused, and they don’t last long. I frankly lose the spark pretty quickly and then forget what I was so excited about. Some things come back, but a lot of it doesn’t last.
I just don’t have the stamina I used to. Not when I’m so tired… as I often am.
But that keeps me from dissipating all my energy. It keeps me grounded and focused. And I see past the shiny facade of raw passion, to find what is truly useful and valuable to me.
And that keeps me safe.
No, more than that. It keeps me stable and helps me to learn anew each day, who I am — and am becoming.
I can honestly say that life is leveling out for me, and I now have what I would consider a “regular” life. And starting from there, things are becoming truly exceptional.
The “regular-ness” is amazing and phenomenal in its own right. I have been thinking about how many years I spent in confusion and frustration, always playing catch-up, always struggling to keep up appearances of normalcy, always feeling — and being — so behind. And never knowing why that was.
Little did I know, concussion / mild TBI had knocked the crap out of me. I’m not like folks who go through their lives at a normal pace, then have a concussion / mTBI screw them up. I was alwaysscrewed up by brain injuries. I started getting hurt when I was very, very young (maybe even having an anoxic brain injury – from having my air cut off – when I was an infant, according to my mother), and I continued to get hurt regularly over the years. I never got hurt badly enough to stop me from diving back into things. And nobody around me knew that I was hurt badly enough for it to throw me off.
I kept all that pain and confusion inside, for as long as I could remember. It was just one day after another of working overtime, trying to keep up with everything… and failing. Always coming up short.
Now, suddenly, I feel like I’ve come out of a long, dark tunnel into the light. No, not suddenly… It’s been a gradual process, so my eyes have adjusted to the light. But the realization of where I am and how I am now, is sudden. It’s like I’ve at last joined the land of the living.
And I am amazed.
How did this happen? How did I get here? It’s been a slow building process, with pieces of the puzzle floating around in the air… taking their sweet time getting plugged back together again. But once they click into place, they click.
So, now I have to ask myself — how did I get here? How did I manage to do this? I had all but given up on myself and figured I’d just be struggling and battling, all my born days. But I don’t feel like that anymore.
How did this happen?
I think there were a number of factors:
Having someone to talk to on a regular basis – first, my neuropsych, then another counselor who has been able to talk me through stickier emotional things that I don’t like to discuss with my neuropsych. Having someone to just listen and then get to interact with, has had a hugely positive impact.
Deciding that I needed to get better. Even when everyone was telling me I was fine, and I didn’t seem at all strange or brain-damaged, I could feel that something was off. I just wasn’t myself. Nobody else seemed to get it. But I did, and I was determined to do something about it.
How did I do that? I’ll be writing about that in the coming days and weeks, as time permits with my schedule. But basically it’s this:
Find a small but significant way I am struggling — a day-to-day required activity that “shouldn’t” be difficult for me, but which is a huge challenge. Getting ready for work each day is a perfect example for me.
Develop a system and a routine for doing that small but significant thing the very same way, each and every day. Making this system into a routine not only makes it predictable and comfortable, but it also keeps my brain from being overtaxed by having to reinvent the wheel each and every day.
Really pay attention to that routine, and really dive into it with all I have, sticking to it like glue.
That routine then “rewires” my system — brain and central nervous system and autonomic nervous system — with familiar and recognizable patterns.
These patterns become something I can then rely on, to know who I am and what I am about… and what I can reasonably expect myself to do under regular circumstances.
In times of uncertainty and insecurity, I can go back to those patterns and find comfort in their familiarity. So that not only gives me confidence in myself, but it also gives me a refuge where I can find some self-assurance again — even in the smallest of ways.
It’s all about building confidence over time. Predictable patterns. Predictable behaviors. Predictable reactions. And that can lead to predictable outcomes.
Our brains are pattern-seeking by nature, and when we don’t have predictable patterns, we have the sense that we are in chaos — we are threatened. Building in predictable patterns is the key, for me, to a healthy recovery from PCS / mild TBI / other brain injury issues. And anybody can use this. Anybody can do it.
Here’s your daily image memory test – study this image for a few minutes… then read the post below, which is a continuation of my work TBI S-O-S… and then try to draw it from memory at the end.
3. Does The Self Actually Matter?
It’s been pointed out by commenters on my blog, as well as in certain religions and philosophies, that the “self” doesn’t really matter. In fact, it gets in the way of being the best person you can.
“The foolish man conceives the idea of ‘self.'” says the Buddha. “The wise man sees there is no ground on which to build the idea of ‘self;’ thus, he has a right conception of the world and well concludes that all compounds amassed by sorrow will be dissolved again, but the truth will remain.”
“And [Jesus] said to [them] all, If any [man] will come after me, let him deny himself, and take up his cross daily, and follow me.” (Luke 9:23)
The self is considered a form of over-inflated ego, in the world I long inhabited. It’s considered a collection of beliefs we have about ourselves that keep us from living a life of sacrifice and purpose. And according many of my teachers along the way, the most important goal in life is to do away with a Sense-Of-Self, to “die to yourself”, and even to embrace the whole of life as either an illusion or a chance to prove your worth in hopes of future reward.
That’s the tradition I was raised in — to forget your Self and sacrifice your own selfish needs for others was the highest aim of life. Individual Sense-Of-Self was unimportant. A sense of the larger community was what mattered. The most important thing a person could do, was give up the Self for the benefit of others. To avoid selfishness at all costs, was the sign of true maturity and development. Who you were, who you expected to be from one day to the next, was of no consequence. What you wanted, what you desired, with all your petty peeves and preferences… well, that all just got in the way of what you were truly meant to do with your life — which was serve the larger whole.
I believed that for many, many years. And in some ways, I think it may have made it easier for me to tolerate the losses of Self I experienced over the course of my life, thanks to numerous mild TBIs. I started experiencing consciousness-altering blows to the head when my age was in the single-digits, and to this day I can recall what it was like afterwards, to be so confused and baffled by things I said and did that — even at a young age — didn’t “seem like me”. The recollection of being so unaccountably angry when I knew that I wasn’t being sensible… teasing other kids with mean-spirited taunts, while inside my own head I was telling myself to STOP! but could not… being off-balance and woozy for long periods of time, unable to play with my new friends at a new school because something in me knew I got hurt when we were playing the day before, and if I joined them again, I might get hurt again… having my grades sink like a rock, when I was always a straight-A student before…
Even as a young kid, I keenly felt the loss of those little pieces of my predictable identity. It was like knife through me… a wide, heavy, wet wool blanket lowered over my head, slowing me down and impossible to get out from under. I knew I was not the person I was appearing to be. I knew I was better than that. More capable. More willing. But there didn’t seem a way for my goodness, capability, and willingness to get out from under that blanket of confusion and rage.
Over and over again, it happened. When I was seven… eight… ten… thirteen… fifteen… sixteen… sixteen-and-a-half. There were probably even more times along the way when I was hurt, but I cannot recall. Nobody thought much about concussion, when I was growing up. Nobody thought getting clunked on the head and being woozy or sick or confused actually mattered.
What didmatter, in the world I grew up in, was forgetting the self — “self” with a small “s”. It was less important, than the collective good. Your own wishes took second place to what the community needed. I was raised by parents who’d grown up in a rural area with farming as a main source of livelihood. On the farm and in the gardens, what you wanted for yourself had to come second to what the group needed. You didn’t get to pick and choose when you would do certain things. Everything was dictated by the seasons and what needed to be done. You make hay when the sun shines. You get up before sunrise to milk the cows. You plant and weed and harvest, not when you choose to, yourself, but when circumstances demand it. And the last thing that helps you in all of this, is a dominant sense of what your Self wants, what it needs, or even who that Self is.
Training myself to forget my Self was an important part of my upbringing. It made it possible for me to do the things I did not want to do — chores, planting, weeding, harvesting, putting up food for the rest of the year. Up to my elbows in steaming hot vegetables, getting the corn off the cobs or the peas and beans out of their shells or snapping the stems off the ends of green beans, it didn’t make any difference what I mySelf wanted. It was all about the work. All about meeting the needs of the group, and putting your responsibilities first. Those who placed a premium on their own Self were a liability to the group, and everyone did their part to show them the error of their ways — either directly with discipline, or indirectly with shaming and ostracism. Many a Sunday, the sermon was about “dying to self.” It wasn’t just a nice thought. For the world I grew up in, it ensured a way of life.
Getting rid of my Self was also a form of self-protection. It was a way for me to make peace with the changes I could not explain within myself. It was also a way to avoid dealing with the troubling behaviors, the strange ideas, the distractions, the temper outbursts, the depression. If only I could stop relying on a Sense-Of-Self to point me in the right direction, I’d finally get on the proper path. If only I could escape that combination of experiences I named “mySelf”, I would be free.
But of course it never worked. And ignoring my own individual identity and Sense of who that was, led me to do things and make choices that put me in even more danger — and that danger also led to still more TBIs. I remember so clearly the determination I felt to put aside my bad feelings about an employer I worked for, for a little while. I didn’t agree with their line of business or their industry practices, but I pushed myself to go to work for them each day, in a location some distance from my home. The stress of the internal conflict took a lot of energy to deal with, and the long commute tired me out. One morning on my way to work, as I pulled out from a stop sign at a blind corner, I was t-boned by a speeding driver who was running late for an appointment. He rammed right into the driver’s side of my car, rattling me and making my car undriveable. The impact took its toll — I could not think clearly, and I could not understand what people were saying to me. It was too much for me to take, after a few days, so one day I just didn’t go to work. I stayed home and drank all day, much to the dismay of my roommate.
Here, I had been intent on doing the right thing and putting my own selfish needs aside, and it cost me.
After a couple of years, I managed to get back on my feet and managed to find a job that suited me better and was aligned with my values. Again, though, I tended to push myself too hard for the sake of keeping up, and one Friday after a long week at work, I was on my way to the train station to pick up a friend who was coming to visit for the weekend. I was late, and traffic was heavy, but I knew I had to push on — just put myself, my frustration, my fatigue, and my own wishes aside, and reach the train station in time to meet them. In stop-and-go traffic, I was rear-ended. There wasn’t much damage to the car, but again, I was rattled. I didn’t stop to see if I was okay. I checked the back end of my car and the front end of the driver who hit me, then we parted ways without exchanging information. I thought I was fine. The car certainly was. But I was not. I pushed myself to get to the train station (so they wouldn’t have to wait), putting my visitor’s schedule ahead of my own welfare,. I paid for that, too. I was confused again, addled, unable to follow conversations, and very manic. My family looked at me like there was something wrong, but I ignored them and kept on with my life, pushing myself to meet my obligations and responsibilities. Pushing myself to forget my Self. Deliberately ignoring the confused Sense-Of-Self that felt unaccountably confused… unsettled for reasons it could not fathom.
Many times over, I have been injured because I pushed myself to forget my Self. I only wanted to get away from that burden of “ego” I carried around with me. I only wanted to be free of the confusion, the frustration, the disappointment, the distraction. I longed to be released from the pain of my existence — not through suicide, but through “dying to myself”, day after day. “Train up a child in they way they should go,” says the Bible verse, “And when they are grown, they shall not depart from it.” That way of denying my Self, and fleeing from my Sense-Of-Self, was still very much with me. I had not departed from it.
And in the process of denying the fact of my Self, I have caused a great number of people a great deal of pain. There were so many destructive relationships that never would have commenced, had I listened to my Self and avoided getting involved with those people. I caused so much harm to others, because of poor choices that were more about what seemed to be the right thing to do, than what my gut was telling me. For so many years, I made choices and did things that were entirely out of character for me, because I feared that shifting Self, and I avoided listening to the still small voice that my Sense-Of-Self used to point me in the right direction. In many ways, I actually had good judgment. But I was so mistrustful of my Sense-Of-Self which drew on that, that I ignored it — and did what others recommended against my better judgment.
I thought that denying my Self and not relying on my Sense-Of-Self would save me.
But it just got me hot water. Again, and again, and again.
It’s taken me years to see that the Self is not my enemy. And it’s taken me almost as long to realize that a solid Sense-Of-Self is the one thing that can keep me on firm footing. What I’ve gradually come to realize, is that Self is more than the greedy ego. It is more than a collection of bad behaviors and peevish needs that nag at the soul, day in and day out. There is more to Self than negative qualities and needy drives to quench insatiable desires. And far from being a barrier to living a fulfilling, purposeful life, our Self — and especially our Sense-Of-Self — is what makes it possible for us to function as complete, independent human beings in a healthy, interdependent community. It’s not what separates us from meaning, purpose, and connections with others — it’s the very thing that makes it possible.
Okay, now remember the image at the top of the page? Get your paper and pencil and draw what you remember. No peeking…
And it would be remiss of me, if I did not write (and think) about what can be done about it.
Because after over 10 years of being so very, very lost, having no idea where the person I was had gotten to, and being so far removed from any sense of who I was, and what I was about… I actually started to feel like myself again, this past spring.
It only took me 10 years and 5 months… but it’s here.
It’s tenuous, and some days I still wonder WTF, but I have to be honest and say, I’m feeling more like “myself” than I have in a very long time.
Maybe ever. After all, I’ve been recovering from repeat TBIs, since I was a kid.
So how do we do it? How do we get there?
For myself, consistency is the key. It sounds simple, I know, but there it is.
Doing the same things the same way, over and over and over again, until the wiring in my brain is re-routed to the newly familiar tasks, and it can do things by rote.
Of course, there are many thing I still have to really work at — my memory and resistance to distraction, among others — but for basic everyday tasks, and routine functioning… I’ve got an amazingly stable sense of where I’m at, and how I can get there repeatedly, each day.
I’ll be sharing more about this in the coming days and weeks. It wouldn’t be fair for me to withhold that information.
And here’s how I did with the drawing today. More on this later.