TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury – What IS the Self?

This is the second part in a multi-part exploration of sense of self and how it’s affected by traumatic brain injury. Read the first part here.

Note: This is the first version I created in January, 2011. I am currently writing a full-length work on it, and I am posting the sections here as I write them (click here to go there now).

But what IS the “Self”?

Okay, since I like to start at the beginning, this is the first question.

I had a few ideas to start with, many of which were informed both by experts and folks who have commented at this blog. George Prigatano has studied anosognosia — or not knowing that you don’t know — as one of his specialties, and I was really intrigued by his writing when I first started my neuro rehab. It especially interested me, as I had been going along for years unaware of my issues and deficits, which were wreaking havoc with my life in serious ways. As for Self, though, there was more to it… and I came up with what I thought were some workable ideas.

I thought I was headed down the right road, then it occurred to me that I was getting all caught up in a whirlwind of ideas. I needed to look outside my own box for answers, so I used my noggin and looked it up. My handy Random House dictionary defines “Self” as:

1. a person or thing considered as a complete and separate individual
2. a person’s nature or character
3. self-interest

Hmmm… Interesting. It was kind of where I was coming from, but not exactly.

Then I googled “tbi + sense of self” and I found some interesting reading. Unfortunately, what I found had a lot to do with professional applications of official theory and what-not, and some of it seemed a bit narrowly focused on information from the outside looking in. I found some of what I read to be oversimplifications of what goes on inside our heads when we’ve sustained brain injuries, and some of it didn’t seem very respectful of our WHOLE selves — it just wrote off the parts of us that had changed (and according to their reports wasn’t coming back) and focused on accepting the loss of those parts.

Ugh. How depressing. If I wasn’t depressed before, I was getting there rapidly. So, I decided to go back in time and consult some of the giants of psychology. (Note: This excludes Freud, because he originally believed that all the sexual dysfunctions of his female Viennese clients was due to sexual abuse and mistreatment, rather than some intricate complex, but his professional colleages shot him down and pressured him to come up with another explanation. He caved, so we got this convoluted “Oedipus Complex” business which has been a bane of our collective Western consciousness — women’s AND men’s — for way too long.)

So I did some reading in William James’ “Principles of Psychology (vol 1)” about “The Consciousness of Self”. Mr. James has always seemed like a nice enough chap to me. I had his book lying around from years ago (it was given to me, but I never actually read it), and lo and behold, there were about 100 pages of discussion about the Self from a historical and psychological perspective. Eureka! I was quite enthused.

But alas, the essay was so densely packed with ideas that go back to Locke and Latin phrases, that I suspended that reading after about 30 pages. Honestly, maybe they needed to use all those words back in the day, but Mr. James could have probably said as much with half the language. I flipped around a bit, but I got the impression that Mr. James was either in love with hearing himself talk in long, extended flowery phrases, or actually somewhat insecure about his ideas, so he needed to wrap them in all sorts of verbal gymnastics. (Note: I’m well aware others could say the same about me, at times.) Or maybe that’s how people back then just talked and wrote. Whatever the reason, I needed something more straightforward, less cluttered to get my head around.

So, I went back to the drawing board and worked on evolving my own definition of “Self” which is consistent with my experience and also makes sense to me.

To me, the “Self” is — plain and simple — the part of us that keeps 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. Even when we’re doing things we know are wrong or we’re having experiences that are uncomfortable, disconcerting, or even painful for us, our reactions and interactions can be familiar enough to give us a foundation of deep-seated reassurance by telling us who we are. Self is our perspective, it’s our opinions, it’s the part of us that lets us interact with the rest of the world as distinct individuals with certain things in common with others.

Self is the part of us that gets things done. It’s the part of us which participates in life in its own special way, that makes decisions and takes action in ways that are ours alone. It’s the aspect of us that over time has developed in ways that make us different (sometimes “better”, sometimes “worse”) from just about anybody we know. Even those traits we have in common with others have a certain quality to them that is uniquely US. That’s the part of us that lets us both perceive ourselves as separate from others and also find some thread of commonality while participating in life and contributing to the world around us. Self gives us a sense of being whole, coherent human beings in a fragmented, often confusing world.

By its nature, I believe Self emerges from the repeated, habitual expression of specific feelings and thoughts and interests which combine into an expression of who we are and what we’re all about. It’s the part of us that reacts in the same unique way to similar circumstances often enough to give our life a flavor all its own. It’s the part of us that responds in a predictable way to the world around us. And each time we react or respond in ways that are consistent with who and what we think we are, we have our Self reinforced and strengthened.

In a very real sense, I believe we are what we do; our Selves arise directly from what we habitually do, what we habitually respond to. Repeated thoughts and actions fuse connections in our brains and inform the perspectives of our minds. The more we repeat thoughts and actions, the more firmly the connectiongs get reinforced, and the easier it becomes for us to think and feel those things. The things we do easily (even if those things are not very positive or productive), we tend to repeat even more, whether it’s because we enjoy it, or it’s just the easiest thing to do. It’s a self-perpetuating process, this creation of Self, and it’s as pragmatic a process as you can get.

When confronted by an angry parent over something we broke, we may lie and blame it on a sibling or a neighbor kid. Our parent believes us, we’re out of danger of being punished and rejected by this important person, and suddenly all is right in the world. We mess up again, and find we’re able to cover our ass again with yet another lie. Given enough time and repetition and “positive reinforcement”, we can turn from someone who lies, into a liar. Or, by chance one day, we pick up a pencil and start to doodle and discover we’re pretty good at drawing. People around us notice our talent and encourage us to do more. Again, given enough time and repetition and positive reinforcement, we can turn from someone who draws and doodles, into an artist.

We join a sports team because it seems like it could be fun, we find that we do enjoy it, and we practice like crazy. We learn to play well, and through our efforts the team has a winning season. In the space of a soccer season, and we go from being a kid who is interested in soccer, to being a Winner. We arrive in a new town as a total stranger, and we connect with people we like — and who like us. We enjoy these new friends, and we build good relationships with people around us, and so we go from being a friendly stranger to being a pillar of our community and one of the most popular people around.

Even without positive reinforcement, if we have the same sorts of experiences over and over again, we can come to perceive those experiences as part of Us, part of our Self — either resulting from our own actions or the cause for why we are how we are. A bully beats us up three times a week all during 5th grade, and we’re too small to fight back, too slow to run away. Through repeated beatings, failed attempts to avoid them, and lack of support or protection from parents and teachers, our behavior changes from outgoing and friendly to reserved and distrustful. In less than a year, we transform from a bright kid who is unfairly treated by bad people, to being a human punching bag who’s almost flunking out of school. A parent chews us out constantly over things we don’t realize we did wrong, and no matter what we do, we can’t seem to do anything right. Every time we turn around, we’re criticized and attacked for what we did or said or thought or felt. No matter what we try, we can’t seem to escape it, and so we go from being a kid who gets a little turned around sometimes, to being a victim of verbal abuse who “can’t do anything right.”

Ultimately, it seems to me, we become the product of actions we repeatedly take in response to our life experiences. In that repetition of responses, whether it’s positive or negative, the connections of our brain and our central nervous system and emotional/mental perspectives are created and reinforced. These continually define and redefine patterns and traits which we recognize as our “Self”. Throw in external reinforcement (from other people or (un)favorable circumstances that happen as a result) which validates our own perceptions, and you have the cement that holds the structure of our life — and our Self — in place… for better, or for worse.

< Read the first part

TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury – Intro

This is the first part in a multi-part exploration of sense of self and how it’s affected by traumatic brain injury. Note: This is the first version I created in January, 2011. I am currently writing a full-length work on it, and I am posting the sections here as I write them (click here to go there now).

Something has been on my mind a good deal, lately:

The Question of Self.

How we can lose ourselves after TBI, how we get separated from parts of ourselves — sometimes some of the most important parts of ourselves.

It’s been discussed on this blog, how loss of self is one of the biggest hurdles of TBI — it’s confusing, disorienting, frustrating, and is one of the biggest challenges to overcome. There’s no lack of evidence that it’s a problem for TBI survivors; “I just don’t feel like myself,” is a common complaint/observation from those working their way back from traumatic brain injury, and I’m no exception. For years, I haven’t felt 100% like myself, and despite my progress over the past three years of neuropsychological rehabilitation, I still don’t feel like I would like to. It’s like there’s something missing — some pieces that don’t quite fall into place.

And yet the question of losing (and possibly finding) a sense of your Self doesn’t seem to be discussed much, outside of the official literature. Thousands upon thousands, maybe millions, of people are struggling with this aspect of their life, and yet the disussion around it seems to be almost, well, silent.

Why? Well, it could have to do with the fact that so many traumatic brain injury survivors are so involved in just getting through their days, that they don’t have a lot of bandwidth to philosophize about their deepest sense of who and what they are. It’s tough to find the time to do personal development, when you’re struggling with things like not losing your car keys, being on time for important appointments, and paying the rent. And for many, the complications of navigating complex bureaucracy of government agencies, raising kids, putting food on the table, and figuring out how to hold down a job, makes the whole situation even tougher — all against the backdrop assumption that “it was just a bump on the head – you should be fine.”

To me, this is a problem. Here we have one of the most vexing and persistent issues of TBI, which causes all manner of suffering for survivors and their families, friends and co-workers, and yet who’s talking about it?

Well, some rehab folks are, apparently. They’re writing about it and talking about it in their scholarly journals. I find plenty of material when I google “TBI + sense of self”. And I’m about to start talking about it, too. This, to me, is a key and critical piece of TBI recovery — our sense of self, who we understand ourselves to be, and who we think we can become. It’s so central to our existence and our ability to recover, I think we owe it to ourselves to spend some time pondering this “gray area” that is perhaps the most vital aspect of who and what we are, and to what extent we bounce back from the problems life sends our way.

Read the next section >

After concussion – you’re not stupid, it just feels that way

After Concussion – You’re Not Stupid, It Just Feels That Way
After Concussion – You’re Not Stupid, It Just Feels That Way

For my special note to doctors, see this post

Update: 12/23/16: I’ve been blogging about how I recover from mild traumatic brain injury for nearly 10 years now. My last mTBI was in 2004, but I’ve had a number of others, and each one was different. As of December, 2016, nearly a quarter of a million visitors have viewed my posts over half a million times. And each one of the hundreds of people who have left comments, have had a different story to tell, as well as different needs to address after their own brain injuries.

I check my site stats, every now and then, looking over the different ways people have found their way to this site, over the past few years. One thing that comes up a lot is questions about concussion and intelligence — being “stupid” after a concussion.

The main thing I hope to convey to people who come to my blog seeking info and reassurance is:

If you’ve recently (or not so recently) had a concussion, and you’re feeling really stupid, know this:

You are not alone.

A lot of people feel stupid after a concussion. In my case, you’d be pretty hard-pressed to convince me that I’m NOT stupid. My sense of being an idiot persists, even to this day – when I know that I’m not less intelligent than the next person because of the head injuries I’ve had.

After all, I have done some pretty lame things in my day, that just looked, well, STUPID. But until I learned about the effects TBI have on you, it never occurred to me that the concussions I’d sustained — in sports (football and soccer) and car accidents and falls — had anything to do with it.

But see, here’s the thing: We grow up learning how to do things a different way. The more you do things a certain way, the better you get at them. We develop skills in certain areas, and our brains get wired specifically to do things a certain way. The better we become at those things the “smarter” we think we are. And we can base a lot of our personal identity on how well we do the things we love to do — or how poorly we do things that we suck at.

It’s all part of who we are, and it’s how we decide what we’re made of and what we’re worth.

But when you have a concussion — a momentary alteration of consciousness that alters your brain function — some of the wiring that lets us do what we do gets mucked up. Even if you don’t lose consciousness, even if you “just” got your bell rung, or you were “out of it” for a while, that alteration of consciousness is a clear sign that the brain function has been interrupted – the brain has been injured.

And then we start to “short out” a little bit. It’s like our brain’s electrical wires got chewed by mice, and the lights start to flicker a little bit.

And then you start to do “stupid” things. Because the autopilot that you used to be on… well, that’s not working the way it used to. The connections in your brain that help one part of you tell the other what to do… that’s messed up. Your transmission is out of whack. And when you think you’re shifting into first gear, you can end up in reverse.

It’s kind of like getting into a car in England or Japan where people drive on the left side of the road, when you’re used to driving on the right. All of a sudden, things are a bit turned around… but you’re not sure exactly why or how. And the turning around seems to come out of nowhere.

Which totally sucks, dude. It totally sucks. Not fun.

So, there you are, going about your everyday life, doing the things you always did before… but all of a sudden, everything is screwed up and nothing makes any sense.

Trust me — it’s not you. It’s the way your brain has been rearranged. It could be that the rearranging will be obvious for only a few hours or days or weeks or months… till you get back into the swing of things and your connections get all sorted out. It could be that your brain gets back online the way it used to — swelling goes down, the gunk that got released in the impact gets cleared out, connections get re-routed or rebuilt — and you get on with your life.

Or it could be that the disruption is really more than you expected (or maybe realized) and you end up walking around in a perpetual WTF?! frame of mind, wondering why the hell things aren’t going as smoothly as they always did before.

Again, it’s not YOU. You’re not stupid, all of a sudden. Your brain took a hit, and it needs some help getting back in the game.

Could be, it takes a lot longer than you expected, for it to get back in the swing of things.

Or it could be that in order to get back in the game, you have to figure out different ways of doing things that really work — instead of the old ways that were dependent on the old wiring.

Granted, it’s not easy to accept the fact that your brain needs rewiring / retraining. But if you were driving down the street by a route you’re accustomed to, and all of a sudden you found the way blocked by unplanned construction, you wouldn’t flip out and blame yourself for being so stupid to try to get down that street. Would you? After all, they didn’t tell you ahead of time that this was happening.

Okay, so maybe you would flip out… but you wouldn’t blame yourself. You’d simply turn your car around and look for a different route. What WOULD be stupid, is trying to force your car down that street when the road is torn open in huge gaping holes, and there are police officers on detail just waiting to arrest you for pushing your way through. You’ve been told clearly that the street is no longer serviceable — you’ve been warned. If you get yourself hurt or arrested, you’ve got only yourself to thank for that.

Now, granted, street construction and concussion aren’t exactly the same thing. And there’s only so much you can expect of yourself, when you’re freshly head-injured. But if you treat the course of your daily life like driving down a road, and you treat the bumps and problems you encounter like potholes and obstacles, it might help put things in perspective.

As human beings, we love to come down hard on ourselves over things that go wrong. We love to look for people to blame — and those people are often ourselves. We also love to think we have a lot more control over life than we actually do. And we love to believe that we have total control and command of our lives.

Sometimes shit happens.

Sometimes concussions happen.

You’re not suddenly stupid.

You just need to retrain your brain.


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Two steps forward, one step back

I’ve had some pretty hopeful things happen with me, lately. Just simple things, but still good.

I recently completed some home repairs that I hadn’t been able to do right the first time. One of them was very, very simple — just hammering a nail into a piece of hardware. But when I had tried to do it, originally, I couldn’t finish the job. For some reason, I just couldn’t figure out how to line up the nail with the hole and give it a few hard whacks with the hammer. But yesterday, I did.

Problem solved.

Finally.

It’s embarrassing… not being able to do a simple think like hammer a nail. I used to make my own furniture, fer Chrissakes. Geez. It’s taken me two years to hammer a simple nail? Well, at least I did it.

I also managed to get back into my regular exercise routine. And I cleaned out the closet in my bedroom, which was full of dirty laundry from (literally) years ago.

More progress.

But at the same time, I’m totally getting hammered by fatigue. It’s crazy. There’s stuff I really want to do, but I’m so wiped out I can’t even organize my energy in a coherent order.

I suppose I should be happy that I’ve got so many interests — and more realistic ones than I had in the past. Time was, my head was all in a whirl over crap that I thought I wanted to do, but it was just busy-ness in my head. Now I’m much more settled and much more realistic.

But damn, am I tired.

Over good things, though. I had intended to spend this evening reading and doing some writing, but I got to thinking about my finances for the coming year, and I sat down with my bills and my projected pay schedule, and I figured out that if I’m careful, I’ll actually finish the year with more money in my pocket than not. And this is with taking on some more serious obligations — like the credit card eradication program I’m on, and clearing up old debts I want to be finished with.

I need to be careful.

So, I will be. And I’ll show my spouse what’s going on, so they can get with the program, too.

I guess that should make me happy that I did it tonight. It’s literally been years since I was proactive about my finances. I literally would just forget about it all, not plan on paying bills, not think things through — just use what money came in to pay for what was right in front of me. But tonight I sat down with a spreadsheet and mapped it all out. And it’s good.

So, that totally justifies my fatigue tonight. That, and the fact that I’m several hours behind on my weekly sleep hours quota. And the fact that I’ve been working on my year-end self-assessment, balancing my inner critic with reason and common sense, and trying to go easy on myself, while still being realistic. I’ve had a lot going on. I have every reason to be tired.

Still, it sucks.

I guess I’ll go to bed.

Getting My Self Back

I will be so happy, when this is over. By “this” I mean the lingering bug that’s been hanging on and making me miserable. I had bronchitis a week or two ago, and it cleared up pretty well, but my sinuses are still infected, and I still have this lingering ache and feeling of being wiped out. It’s more than a head cold, but less than the flu. The strep culture came back negative, so it’s rest and lots of fluids for me.

Ugh. I just don’t feel like myself, and it makes me nuts – especially since it’s the holidays and ideally I’d have this time off to take care of the things that I normally don’t have time for. Christmas shopping and spending time with family and getting cards out in the mail… It’s either not happening, or it’s happening at a much slower pace than I’d like. Getting sick right after Thanksgiving was about the worst thing that could have happened to me, but it did. And it’s taken me almost a month to get back to where I can just work out a little bit in the morning with a light version of my daily exercise routine, and feel half human throughout most of the day.

But at least I’m getting there. Sitting around the house, feeling awful and not being able to do things I need/want to be doing is more stressful than doing lots of things like I do on a regular day, and I’m about maxed out on my quota of sitting around doing nothing but feeling bad.

Good grief. I need somewhere to put my energy that is not just mental. I need physical activity, but I haven’t been well enough for the past few days to do much of anything. My body aches, I’m just so wiped out, and when I get over-tired in the evening (as I do), I have trouble managing my moods and behavior, and then I get overwrought and start to pick at my spouse, which doesn’t result in anything good, because they’re sick, too, and they’ve got a very short (and loud and vehement) fuse.

Any way you look at it, it’s a trial.

And when I think about it, this being sick reminds me a lot of how I felt when I was trying to bounce back from my last TBI. Nothing worked, nothing was right, and I was wiped out all the time. I didn’t feel like myself, I felt so lost and stuck in never-never land, and I couldn’t figure out how to get back. At the time, I was profoundly unclear about the reason why things were so bad. “Stress was the culprit,” I thought. I blamed it all on stress. Which was partly true – except that I also had a bunch of connections in my brain that had been rearranged that needed to be put back into some semblance of order, and the stress was just a contributing factor to things going All Wrong.

And as I think about my own situation, six years ago, when things were starting to unravel, I think about all the other people out there who have experienced the same sort of setback. Injury. Sickness. Chronic illness that just won’t quit and takes from them the most valued part of their lives — their ability to participate and contribute to the world in a way that is unique to them and their own abilities and talents. It hurts and it pains and you just can’t escape it. You’re stuck. And there doesn’t seem to be any relief in sight. I think about this a lot, these days, as the holidays are in full swing, while so many of us are not entirely able to participate, for one reason or another.

Participation comes in many forms, and one of the bitter ironies that I’ve been thinking about this season, is how focused our country is on the material aspects of Christmas. When I was a kid, I often heard this preached from the pulpit, about how this country has lost touch with the “reason for the season” but the objection never really meant that much to me, until lately, when my lack of money and my logistical challenges exclude me from participating in Christmas and enjoying it. I don’t have the coin to buy a lot of presents, and I really dislike the mall shopping frenzy. All the people and the noise and the lights bother me, they overwhelm me, and they wear me out, which makes me more susceptible to anxiety and outbursts and melt-downs (as my spouse can attest – last night was not pretty).

And I hate checking my email, these days, because so many businesses are sending out “Hurry!” messages and “Only one day left!” false urgencies. They may be in dire need of my money, but I’m not in dire need of their stuff, so it seems odd that they’re shouting at me, instead of me shouting at them. There’s a whole lot of bass-ackwards shouting in my inbox, these days, and to make matters worse, the 10% discount they’re offering makes no difference to me, because I can’t afford any of what they are selling. Now that Christmas is so much about propping up the American economy and so much less about extending kindness and compassion to others, it’s become a truly dreaded season in my mind. And that’s a shame. Because it used to mean something very different to me.

As you can tell (if you read my earlier posts from a few days ago), my sentiment about this season has changed considerably. Earlier this week, I was chafing at the idea of not having a routine and I just wanted this holiday season to be Over. Now, don’t get me wrong, I still am chafing over a lack of routine – and a lack of movement – but that constant restlessness and agitation has eased somewhat, since I’ve been resting on and off, taking naps during the days, and focusing intently on relaxing — giving my sympathetic nervous system a break, and just letting things go, as best I can. I’m doing what I can to get into the season, all my logistical issues notwithstanding.

Because as they say, this time comes but once a year. And even though it’s taken till Christmas Eve for me to get into the spirit, now I find myself there. I’ve come kicking and screaming, but I’ve eventually gotten here, and that’s the thing that counts. And now I want to make this time count. Whether or not you believe in Jesus Christ as your personal Lord and Savior… whether or not you think the Winter Solstice matters and is worthy of ceremony… whether or not you celebrate a Season of Lights or a time of Kwanzaa traditions… whether or not you believe in or celebrate anything at all… there’s something to be said for slowing down, even stopping, and looking within to reflect on the past year, to give thanks and appreciate what good has come, to see where things went well and where they got fouled up, and just take time to be with family and friends in ways that you can’t during the rest of the year.

And that’s where I find myself right now — not with family and friends (I’ve been too ill for that), but looking back on the past year and looking forward to the next, feeling profoundly grateful, thinking about what worked and what didn’t, and what I would like to do differently. I’ve put together some new year’s resolutions, which are fairly fundamental and very achievable. And I’m hopeful that with the help of friends and family and my neuropsych, I can stay on track. I’m trying to keep things simple – as simple as I can – and not overwhelm myself with too many details. That’s important.

I’m also working on professional goals and objectives for next year, trying to come up with SMART goals, that is, goals that are:

Specific
Measurable
Attainable
Relevant
Time-bound

It’s a bit anxiety-producing for me, I have to admit, since staying on track and following through are huge deals for me. Committing to SMART goals and having my bonus and performance based on them is nothing new. It’s standard procedure in many places, and it’s totally understandable. But for me, it’s presents the kind of challenge I’m more comfortable with avoiding.

There’s no avoiding this, though. Not in the least. Anyway, this is something I must learn to do, in order to do well in life in general. This isn’t just about my job. It’s about my life. The focus and determination I cultivate on the job translates into focus and determination in the rest of my life, and vice-versa. The work I do is intimately connected with who I am and what I’m about. It’s an outward expression of my inner life – there’s no avoiding or denying that.

And that’s what makes me nervous. Because deep down inside, there’s something in me that believes I’m not quite good enough, not quite capable enough, not quite able to finish the job and succeed at what I undertake. Years of one failure after another, one setback after another, have not helped me and my self-esteem. It even goes beyond “self-esteem” — I have a long history of royal screw-ups that stand as clear and convincing evidence that there is something truly wrong with me, and no matter how hard I try, something will inevitably go wrong, and everything will go straight to hell.

At least, that’s what my brain is telling me. That’s what my experience tells me, in countless little ways. “There’s no arguing with the evidence,” says the little voice in the back of my head. “No matter what you do, no matter how hard you try, you’re doomed.”

But that’s not entirely true. In fact, it’s not true at all. My true self is not a failure. My true self is not a loser. My true self is not a poser who’s just buying time till the next catastrophe takes over. I’m not destined to fail. The only reason I will ever fail at anything, is if I give up trying and walk away from the wreck, refusing to try to piece everything back together. So long as I keep trying, no setback can ever be final. And that’s what I have to keep in mind. Define my SMART goals, yes — and keep them uppermost in my mind throughout the coming year.

It’s not easy, of course, turning around the false perceptions I have of myself and getting my true Self back. It’s not easy, getting my mind to focus on the successes and good that I’ve accomplished in the past year. It’s a pretty big challenge, to turn it around and get myself out of my hyper-critical head and into a space where I can allow my Self to be successful, accomplished, and happy. After all, much of my energy in life has been devoted to putting out fires that started, thanks to invisible liabilities I had and didn’t fully understand. Getting used to the idea of doing anything other than damage control is a new thing for me.

But when I put all that aside as well-intentioned but misguided compulsion, step up and take action, in spite of fears and reservations, and earnestly desire to improve and change, I start to break that dread hold of anxiety and transform it into something very, very different. When I dismiss those voices of 40+ years of messing up, and decide to focus on the positive aspects of my life, I have a chance to change.

It’s not easy, of course. It takes determination and more than a little courage, but I have both of those in abundance. We all do, really, deep down inside. We just have to find the place where those emotions live and tend to them like the tender shoots of new growth they are. We have to protect those aspects of ourselves, when we are feeling at our worst. We have to be able to see that what we imagine about ourselves is just that — our imagination — and realize that what we imagine about ourselves is incredibly powerful and potent. And it tends to come true.

We can choose to imagine ourselves weak and fearful and prone to messing up. And we can be that way.

Or we can choose to imagine ourselves strong and courageous and persistent against all odds. And we can be that way, instead.

It’s our choice. It’s our option. It’s in our power to change the stories we tell ourselves, and get our True Selves back in the place where they belong.

This work that I’m doing while I’m offline — sitting with myself while I am sick and tired and run-down and looking within to find out who is really there and what they have to offer — is much harder than the work I do while I’m online with my job. But it’s very, very necessary, and I can’t move into the coming year without it.

Getting knocked out of commission with bronchitis and sinus infections is not my favorite way to pull myself out of the stream of everyday life and spend time finding where my True Self has gotten to.

But in a pinch, I guess it will do.

About Your Re-Employment after mTBI…

… I’ve got some good news and some bad news and some more good news.

The first good news is, it’s possible — indeed, even probable — that after a mild traumatic brain injury, you will be able to return to work at the same level as you were before. You may even be able to get to a higher level than ever before (as is the case with me), by developing compensatory strategies and techniques that offset the known issues that get in your way.

The bad news is, this takes time. I’ve heard recently that the average time for a traumatic brain injury survivor to get back to full employment is 3-5 years. For someone mid-career, this can be a huge hurdle, an interminable wait. It can also be a significant discourager and handicap, as you work at getting back to the level you’re comfortable at.

Recruiters and prospective employers may ask, “Why were you out of the action? Why did you take that detour? Why did you stop working or take other jobs that were obviously beneath you?”

In my case, I have the plausible, believable (and fortunately true) explanation (not excuse) that I was helping a family member recover from a serious illness, and I needed to scale back my hours to help them. I then assure people that the family member I was helping is 100% recovered and self-sufficient, and they no longer make demands on my time. I’m fortunate to have a solid background and firm footing for my past employment, to keep me perpetually up for consideration by numerous potential employers.

In your case, if you don’t have that kind of background to explain an interruption in work, you need to come up with a totally plausible reason for your change in work venue. By all means, DO NOT TELL PEOPLE IT WAS BECAUSE YOU SUSTAINED A TRAUMATIC BRAIN INJURY AND WERE UNABLE TO WORK. People just don’t understand TBI, especially mTBI, and you will pretty much disqualify yourself on the spot if you use that as your explanation.

A better choice of words? Something that emphasizes the growth prospects of your “choice to change jobs” — and you have to frame it that way, to show that you’re totally committed to growth and improvement in all your work activities… which prospective employers see as translating to your future work with them.

Here’s a scenario:

Individual A has been working steadily for a stable company for a number of years. They have worked their way up to a mid-level position with a fair amount of responsibility and influence.

They are involved in community activities and volunteering, as well as playing ice hockey in a league on a Saturday afternoon. During a game, they get checked hard and go down and smack their head on the ice. They see stars and are a bit wobbly on their feet when they get back up, but they continue to play. And they fall again and hit their head — harder, this time. They don’t feel well after the last hit, and they leave the game, go home, throw up, have trouble with lights and sound, and make a trip to the ER. They get a CAT scan, maybe an MRI, and everything comes back fine. The doctor tells them to take it easy and not exert themself — just rest and let the brain recover from the hits.

Individual A takes a few days off work, citing the flu/upper respiratory infection, and then goes back to work. But they have trouble concentrating, their moods are extremely volatile, and after several months of being unable to complete their work to their supervisor’s satisfaction, they are put on notice that they must either shape up or ship out.

They know better than to get fired, and they know that if they don’t do something, they’re going to get canned, which they cannot afford. So they start looking for work, and they decide to start contracting/temping for 3-6 month jobs in positions that are far less challenging than what they’ve been doing, so they can have a steady paycheck, but their behavior and mood and execution difficulties won’t be as obvious, as they would be in a permanent situation.

Several years ensue, with them working progressively longer jobs… from 6 weeks, to 3 months, to 6 months, to 9 months, to a year… then they decide it’s time to start looking for a new permanent job. The pay is not as good with contracts, and they need better insurance as well as paid time off, so they can actually take time to rest without getting their pay docked.

They go on interviews, and when the interviewers see their resume, they are surprised to see that they had a break in regular employment for the past three years. This doesn’t make any sense, and red flags go up.

“Why did you stop working at _____?” they ask, about the last place Individual A had a permanent job.

There are a number of different routes they could take. The could say that the company they were with didn’t have the kinds of opportunity that they were looking for long-term, and they needed to branch out and do some serious thinking about where they wanted to go with their career. The past few years have been a way for them to take more time to get clear on their own personal goals and objectives, and also survey the industry more from a distance, so they can make better strategic decisions in their own career path.

They could also say that they have been involved in volunteer work, and they hadn’t had as much time to devote to their community work, with so much day-job responsibility. The past three years were a time for them to give back to the community, while staying active in the workforce.

They could also say that they wanted to take more time to reconnect with their family in ways they couldn’t when they were working so much in the past.

These are just a few of the possible routes they could take — the important common thread with them, is that they are all positive and pro-active. They show that they are managing their own life, that they are the kind of person who takes command of their own destiny and takes responsibility for their life and their work. It’s not a vicitim mentality, a way to excuse and justify — it’s a mentality that focuses on the positive and pro-active, which is the kind of quality a company looks for in a potential new hire in a position of responsibility.

Again, TBI doesn’t factor into it at all. It is in the background, but it never needs to be mentioned. In fact, it’s better if it never is. And that’s for the benefit of the impacted individual, as well as the potential employer.

See, here’s the thing — successful recovery from mTBI is very much about personal responsibility. Taking responsibility for your behavior and your choices and your actions and their impact on others, and actively managing those aspects of your life. Developing this skill doesn’t just help you in your personal life — it’s also very beneficial in your professional life. Indeed, as you develop a better and better familiarity and command of your own inner landscape, that ability can translate to your outer world, as well, making you a better employee, a better manager, a more compassionate, patient, and emotionally intelligent co-worker.

Now, don’t get me wrong — I’m not saying that mTBI can be one of the best things to happen to your career. It can totally wreck you and throw you off course for years and years, even decades. Some people never fully regain their feet, like a person I used to work with who was probably one of the most remarkable under-achievers I’ve ever met. Their explanation was that they’d sustained a brain injury when they were a kid and had a bike accident, so that disqualified them from using their considerable creativity and ingenuity in a professional way. It was sad, really, to see this person with so much talent and ability, essentially bench themself permanently. Because they had decided they “couldn’t.”

What a waste.

A needless, useless, pointless waste. All because they let that former brain injury define them.

I still cringe when I think about it.

Anyway, that doesn’t have to happen to you. Like I said at the beginning of this post, full re-employment after TBI is possible, but it takes time. Still, it can be done. It just takes a whole lot of effort and a lot more time than we think it will.

For me, it’s taken about six years to get back to where I want to be. Six years ago, I was rising meteorically in my organization, leading multi-national teams on projects that served more than 10 million active customers, with direct access to chief decision makers and holding discussions with potential clients (and helping my company win their business to the tune of millions of dollars each year). Then I fell down some stairs, smashed the back of my head on 3 steps, and everything went to hell in short order. I went from being a hands-on supervisor in three continents, to sitting silently in my cubicle for hours at a time, just staring at my computer screen, snapping at anyone who came near me, unable to remember who it was I was talking to.

And thus began the downward slide, which sent me on a 5-year detour out of my main career path, put me in a bunch of situations that were far beneath my skill level, and now has me battling back from the brink of personal financial ruin — fortunately with a really great company with wonderful future prospects and amazing teams all-around.

But downward slides don’t have to last forever. They can even slow down and stop short and turn around. In my case, the slide is turning around — and make no mistake, it hasn’t been quick or easy. It’s required a tremendous amount of work, constant vigilance, resilience for all those times I strayed or got lost or forgot what path I was on. But that work and energy and focus have not been expenses for me. They have been investments. And the pay-off has been huge.

Someone once said to me that our greatest weaknesses can sometimes become our greatest strengths. And I have to say that with regard to mild traumatic brain injury, the skills I’ve developed in managing my own physical and cognitive issues have helped me become a better manager of my workload, my relationships, and my working life overall. I’m far more mindful now, than I’ve ever been before. I’m also more cautious and careful, and the attention to detail and keeping the big picture in mind I have been forced to cultivate for my persona life have done wonders for my professional path.

See, it’s not just about being employable again, that matters to me now. After all I’ve lost in the course of my life — relationships, jobs, homes, money, stability… just about everything that people told me I HAD to have to be happy — what I know now is that my resilience will see me through, and my ability to rebound, which I’ve had to develop, will be there for me, even when all seems lost, and I can’t see my way through. Being employable is just part of the whole picture. What I want much more, is to have a full and complete life, one where I have warm connections with family, friends, and co-workers alike, and where I can be connected with a larger world than what exists in the hidden recesses of my brain.

Last night, I had a terrible nightmare that my brain was horribly broken, and nothing was working. I couldn’t think, I couldn’t talk in a way that I could be understood, I couldn’t behave properly, and all the world around me shimmered and shifted and careened wildly out of control, as I struggled to pretend to keep up. All I could think about was the chatter in my brain, being unable to interpret anything that was going on. All I could do was withdraw, farther and farther back into my shell.

But then, in my dream, I stopped. I just stopped. I quit thinking hard about everything going on around me. I quit trying to analyze everything and see what it truly meant. I got out of my head and quit second-guessing what people were saying and doing.

I also stopped withdrawing. I started engaging people in conversation. I started reacting to what they were saying. I started being mindful of others, not just myself. I started doing things — moving physically, like walking and moving and talking with my hands — instead of just sitting passively by, trying to sort things out. I ventured out of my shell and started to DO.

And the nightmare stopped. It turned into a regular dream. It was still frustrating for me to be dreaming about paying close attention to others outside my head. It felt uncomfortable and slow and ungainly. But it worked. By the time my dream was over, I was fully engaged with the people in my dream, I was having conversations, I was doing things. And it wasn’t a nightmare anymore.

That is the ideal I seek — in my waking life, as well as my dreaming one: to be connected with others in ways that help me be part of the larger world. I’ve been locked away from the rest of the world for so long, being uncertain and unsure about so very much, and not knowing how to step out and find out what else is out there. It’s true in my working life, that I work better when I am connected with others. And I feel better, too. I AM better, when I do that. And the connection I practice at work carries over to the rest of my life, my social life, my family life, my community life.

It doesn’t just make me fully employable (and more). It makes me a better person, a better member of my community, a better spouse, a better relative, a happier, more fulfilled individual who can contribute more to the world around me than I ever dreamed possible.

Yes, after TBI, you can become fully employable again. And more. The good news is, you’re not just going to become fully employable. Your life is going to become fully liveable.

So live. And learn. And love. Never stop trying, and you’ll never stop receiving the blessings and gifts that come from this.

Just something to keep in mind in the New Year.

Routine reset time

Well, the end of the year is soon upon us, and with it comes some soul-searching and reflection on the past 12 months. The past year has seen tremendous growth for me, and as with many things that demand a lot of me, I find myself pretty worn out, right now. Technically, I’m supposed to be leaving to visit family several states away, in a few hours, but that’s looking less and less likely, as both my spouse and I have been ill over the past month, and we’re still not 100%.

We need to be 100%, so it looks like holiday family time may take a hit this year.

This is really the first year in nearly 20, that we haven’t made some sort of trip to see our families. We’ve always been good about it, making mammoth trips to see bunches of people in multiple states, but this year is different.

I think one of the things that makes it different, is that this year there’s a whole lot more riding on us both being as functional as possible. We have pretty high stakes in our work – my spouse recently took their professional work to a new level and has been reaching out and connecting on a much larger scale than ever before, and my own work has really taken off as well. Both of us have been putting a lot more of ourselves into our work, and we’ve been getting a lot more out of it.

But it’s problematic, to be forced to choose work over family — or in the present case, our own health over the wishes of our relatives. It’s not so much that we don’t want to go, as that we just need to get healthy, and traveling during peak travel times when we’re both sick is probably not the best thing to do.

In past years, I’ve gotten hurt during holiday seasons because I was pushing myself too hard, I wasn’t paying close enough attention, and there were car accidents and falls that really hammered me pretty hard. The last holiday accident I had almost wrecked me for good, and it’s taken me 6 years to get back in the swing of things, back to about where I was when I fell.

The good news is, I’ve been able to get back. The bad news is, it’s taken a lot out of me, it’s been a long and very confusing and at times alarming process, and I’ve had to re-learn a lot of my old functions in a whole new way. Again, I have managed to get back, but not without tremendous amounts of effort, plenty of blood, sweat, and tears, and some serious dents in my sense of self.

It has not been easy. And now I am tired.

I guess one way to look at this place I’m in now, is like it’s a much-needed rest period after a time of tremendous growth. When you expend a lot of energy at something, you necessarily need to take some down-time and rest and recuperate. I haven’t really had a chance to do that for the past several years. It’s been constant going-going-going, and I haven’t been in a place where I felt like I could finally let my guard down and just BE. Now, this holiday season, I am feeling more like I can just be. My job is good, people are very happy with my performance, and the next year looks like it’s going to be a good one, too. Plus, I’ve been pushing like crazy, the past few months, and I’m finally to a place where I can take a break, step back, review the year, and prepare for the next. I need this time to do that. I really do.

I just wish I didn’t feel so damned guilty about it.

I wish I didn’t feel like I was letting my family down by not going.

But I do.

Guilt or not, the fact is, I’m not fully recovered from my illness, and neither is my spouse. And if we push ourselves even harder, then we run the risk of complications — and starting the next year off completely wrong. That’s just not good.

So, we need to think about alternatives. I know that Christmas is supposed to be the time to give presents and share time with each other, but that’s not the only time of year for that kind of activity. The occasion is a solemn one for many, and I appreciate that. But it’s always rubbed me the wrong way that Christmas alone was reserved for that kind of generosity of spirit, and the rest of the year it was fine to not be that way. Personally, I would like to see the holiday spirit extend farther into the year — all year, if possible. The time for hope and faith and giving is never over – it is always needed, and it’s always welcome. And to whatever extent possible, I would like to extend it in my own life throughout the year.

I’d like to work it into my routine, so to say.

I’ve been thinking a lot about routine, while I’ve been driving to and from work, lately. I posted about needing routine a few days ago, and it’s still very much on my mind. I am a creature of habit, and the good habits I’ve created have saved me many times from disorganization and chaos. When my routine and my “systems” are disrupted, life becomes needlessly complicated and very frustrating. Maybe I’m being overly rigid, but for going about my daily business, they really are indispensable. They save me so much time and energy and aggravation, I can’t even begin to say.

I’ve made good progress, developing my routines, and I think now I need to reset them.

See, the past few years have been about getting myself to a more functional place. My main concerns were things like getting myself up at a regular time, going through my morning activities in a systematic fashion (so I could remember to wash my hair and take care of the household pet and get my breakfast — all without melting down and starting the day off on the wrong foot), and structuring my days so that I could get a reliable amount of sleep every night, and also get much-needed exercise each day.

But now I find myself well able to do all that, and without needing notes and reminders and prompts, to the same extent that I did. I’ve restored a large amount of basic functionality that I lost in the last injury, and I’ve also developed strategies and strengths that I never really thought I could, over the course of my life. I’ve done really, really well. And now it’s time to take things to another level.

It’s time for me to start approaching my life not in reaction, but as a director of the events of my life. I’m a lousy victim, but I have to admit that I’ve always been in the habit of responding to emergencies, rather than creating something different and better in advance of the emergencies. I’ve been well accustomed to handling crap that came up (a lot of times seemingly out of nowhere), but when it came time to plan out things ahead of time and ensure that they came into being in a timely fashion, well, that’s where things really broke down.

I hope — no, plan — to change that next year. I’ve been noticing more and more places where I have blind spots, or I get blindsided and don’t react well. So, this coming year I’ll be spending more time thinking things through ahead of time, so they don’t come up so much. Of course, there’s no way to prevent every unfortunate event, but at the very least, I can invest more time and energy in anticipating things that can reasonably be anticipated.

And I can invest some time and energy in coming up with viable alternatives when things do go south and become a big problem. Like balancing health with family time. And making sure that work and rest aren’t mutually exclusive.

So, I have my work cut out for me. But it’ll be well worth the effort, I believe.

Anyway, you never know how it’ll go, till you try. And try, I shall.

When things are very, very different

Summary:
Traumatic brain injury can change you in ways that are hard to handle. Lower energy levels, getting fatigued more quickly, mood changes, memory changes, and slower processing speed can make your life into a very different experience than before your injury. But several things can help you turn this around:
– a positive approach
– intentional adaptations
– accommodations for your changed abilities, and
– mindful management of your challenges.
By working with your brain’s “new wiring” you can recreate a life that may be different than before, but is still rich and fulfilling and full of hope.

—————

Today was one of those days when everything felt like it was catching up to me again, and not in a very good way. I’ve been pushing pretty hard at work, and I’ve been run down. I’m still not 100% over my bronchitis, and I can feel the lingering infection still hanging on. As much as I want it to be over, it’s not.

Yet.

Of course, this will change, I know, and soon enough I’ll be back on track. But so far, it’s taking longer than I expected, and it’s bringing me down.

Times like this, I can tell things are different with me than before my last accident. I’m not as quick, not as bright, not as blazingly & instantly clever as I was back in 2004. Things take longer for me to sort out, than they did before. People around me don’t know this. I don’t know many people who knew me back then. The people I work with certainly didn’t know me prior to 2004, so they have nothing to compare to. Even the friends I have now, didn’t really know me back then — and the ones I had then, I pushed away from me and distanced myself from, after my fall.

I just couldn’t deal with them. I also couldn’t deal with myself when they were around. I still can’t deal with most of them very often. And when I do interact with them, I can only handle things for a little while before I start to get worn out and uptight.

This is different from how I’d like it to be. It’s different from how things used to be. I used to get involved in huge undertakings that were very involved and time-consuming. I had a lot of activities going on and I was often involved in large-scale productions — shows and events and tours.

Now, however, I find myself running out of steam after just four days of work. By Thursday nights, I’m often completely wiped out. I would like to keep going, but I just can’t.

That bothers me. A lot. I must say, I don’t much care for this new way of living, where I have to pay such close attention to my energy levels and such. I have only so much energy to get through each day, and I find I have to pick and choose very carefully, what I get involved in. It cuts into my social life. It cuts into my marriage, too. It separates me from the people I care about and the things I used to love to do.

And it sucks.

This is very, very different from how things used to be, and it doesn’t feel like an improvement. But that’s how it is, so there it is.

Anyway, enough feeling sorry for myself. I’ve been sick – I know that. And when I’m sick, it’s really easy for me to feel down and get down on myself. I’ve noticed that even when I’m not sick, but I’m really tired, I tend to have a darker view of the world and my life than usual (and than what’s justified). I start to spiral down into a very dark place, and no matter what anyone says to me, I just can’t bring myself up out of the dumps.

The only thing that saves me is a good night’s sleep. It’s amazing how much good that will do me. And I need to keep that in mind, when I’m pushing myself so hard and being rough on myself for not being more chipper and happy and energetic and responsive to the world around me.

I think this is one of the aspects of traumatic brain injury that gets lost in the shuffle — the sheer impact of FATIGUE. When you’re recovering from a brain injury, you can be So Tired all the time, and you can sleep a lot — or not sleep as much as before the injury. After my last accident, I went through about a year of not being able to sleep past 3 a.m. That was awful. Every night I was waking up at 3, and I couldn’t get back to sleep. I think it was a combination of head injury and the stress from the difficulties I faced. I couldn’t handle anything, all of a sudden, and it was stressing me out. I didn’t understand what was happening to me, and I didn’t realize that falling down those stairs and smashing the back of my head on those steps had anything to do with what was going on with me. I was just lost and confused and very, very angry. All the time.

Things were very, very different, and I didn’t know why. And I wasn’t doing a very good job of handling the change.

Now it’s six years down the line after that accident, and things are still very, very different than before. I have less raw energy now, than I used to have. And I really notice the change in processing speed. I’m not as quick as I once was. I’m more plodding, more deliberate, and slower on the uptake. I sometimes just don’t get what people are saying to me, whereas once upon a time, I felt like I could get things very quickly. I felt much quicker, and I felt much more energetic.

Now, I’ve been thinking about this a good deal over the past few weeks, and it has occurred to me that in the past, I may have just felt like I was quicker, when I actually wasn’t. Having sustained a number of head injuries over the years, it’s reasonable to expect that my processing speed would be a bit slower than others. But in years past, before I realized what the underlying issue was, I was really driven by a ton of nervous energy to drive-drive-drive. and when I think about it, I actually believe that I was slower than I perceived myself to be — but to compensate for it, I used a lot of nervous energy to work overtime to compensate for my shortcomings.

Now, it’s not so much that I’m markedly slower than I was before — I just have a clearer view of my true processing speed. Whereas I once told myself that I got a lot more than I really did, and I was constantly over-estimating my ability to remember what people told me and things I discussed with others… nowadays, I am much more aware of how slow my brain really does work, the holes in information that show up, and the places where I’m just NOT getting what someone is saying to me.

But unlike before, when I would fake my way through and just fudge everything and make up for my shortcomings with lots of hard work and pushing through to make up for lost time and messed-up activities, now I stop in mid-conversation to ask for clarification. I ask people to back up and clarify what they are talking about, and I repeat back to them the things we discuss, so I can better understand their point of view.

This, too, is very, very different from how things used to be with me. Before I started working with my neuropsych, I Never did this. Ever. I didn’t think I needed to. I was convinced that I could remember a lot more than I did, and the things I didn’t remember, I thought didn’t matter.

But they did. They mattered a lot. And as a result of forgetting important things and overlooking details and getting turned around, I spent decades doing one step forward, two steps back, one step forward, two steps back… Which doesn’t bode well for one’s career, I can tell you that.

Anyway, I’ve managed to change that dynamic considerably, and I’ve developed a much better habit of stopping people as they’re talking and asking for clarification. It’s when I don’t stop and ask, that I get into trouble. I’ve just about (but not completely) gotten over the sick, sinking feeling that I look like an idiot, when I ask for clarification. I’m much better at it — and even in those times when I do feel stupid for having to ask for more explanation, I manage to get myself in the game and just go ahead and ask.

I’m still working on that, but it’s going better. These things just take time.

It’s not easy, changing a lifetime of bad habits like this. But it can be done.

It’s not easy, rewiring my brain to support different behaviors and shed old, bad outlooks. But it can be done.

It’s not easy, admitting after so many years that I really am a lot slower and a lot less able to remember things than I’ve always pretended I was. But it can be done.

It’s humbling and it’s frustrating, but I have to do it. I have to modify my behavior and change my ways, so that I can compensate for the few deficits that I have. If I DON’T change and develop ways to compensate, then my behavior turns my few deficits — slower processing speed, lousy short-term memory, tendency to get fatigued, and tendency to get mired in details and miss the big picture — into full-blown handicaps.

It’s not just the mild traumtic brain injury that’s getting in my way, it’s my reaction to it and my ways of (mis)managing my issues, that are the real problem.

This is important.

Because when I lose perspective and over-react to my challenges, it can really send me into a tailspin. When I get upset over things I mess up and start beating myself up and am very critical of myself, it makes it all but impossible for me to learn and grow in a positive and constructive way. Make no mistake — we all are human, brain injuries or no, and we all have our shortcomings. Traumatic brain injury has a way of blowing everything out of proportion, and when that happens, whatever chance I have of recovering and recouping and bouncing back gets slashed in half. And I sabotage myself.

Now, of course brain injury has an impact on me. It has really undermined my energy reserves and stamina, and fatigue feeds the constant restlessness in my head and puts me on edge, making me — at times — very difficult to live and deal with. But there are things I have control over — like how much sleep I get, like how I react to situations, like how mindful I am of what’s going on with me so that I can manage my situation.

It’s not ALL about the brain injuries. It’s also about how I react to the results of those injuries and find ways of working with (or around) them.

Speaking of working with my situation, it’s time to step away from the computer and take care of myself. So that I can get into the coming days and weeks in ways that make me happy, proud and satisfied.

Because I can.