What Twitter Stands For


That’s pretty much how it seems to me — especially considering how peaceful my state of mind has become, since dropping off Twitter. Seriously, my internal life is much quieter, ever since I walked away from the 140 characters of overly brief annoyance and provocation.

As an extended bookmarking and link-sharing mechanism, it’s great. But people can’t seem to resist the temptation to editorialize — and that’s a terrible idea, if you only have a few lines.

Under-doing anything tends to be a bad idea, and trying to pack extended thoughts into a condensed “container” has been the bane of my existence. Truly, Twitter represents just about everything that makes life difficult for me (and countless other TBI survivors) in this modern world.

First, it’s too abrupt. There’s no time to really think things through, when all you have is 140 characters. When your brain needs longer to function (and that goes for anyone who really wants to have a more studied life, not just folks with brain injuries), that very brief space is like a vice closing on your cognition.

Second, it’s too quick. People who have conversations on Twitter drive me nuts. There is no way I can actually have a meaningful exchange with anyone — even people who agree with me (and vice versa).

Third, it lends itself to extreme impulse control issues. The two elements above can stoke the fires of anxiety and frustration, tiring you out and further exacerbating an already shaky control over escalation.

There’s more, of course, but those are the big three for me — and the thing that makes them all even worse is the cognitive drain and encroaching fatigue that accompanies following and reading streams of tweets. If you’ve got slowed processing speed (that would be me), it can demand a lot to have even one back-and-forth. I tried it, a few months back, and it went downhill quickly. I got bent out of shape, and so did the other person, and the only thing that came of it, was irritation … and a touch of fleeting rage.

Nope, just not worth it.

It’s a constant struggle, in this world, to keep focused. Especially in the world where I work, it’s brutal. Absolutely brutal. And as the whole restructuring thing goes on, and I contemplate what I will do if I lose my job, I think about what kind of work I really want to do. I’ve been in the tech business for quite some time, now, and over the past 5 years or so, it’s become so much more “interrupt-driven” — which is a disaster just waiting to happen for me. I have to constantly guard against interruptions, constantly managing others’ expectations, training them to know that I will not drop everything I’m doing, in order to allay their irrational fears.

On top of it, the tech world is chock full of “youngsters” who thrive on constant change and interruption. And it’s full of execs who want to pay rock-bottom prices for folks just now entering the workforce, who may be “up” on the latest technologies, and promise to propel them into the brilliant new future ahead. Someone like me, who’s getting long in the tooth and is harder to fire (the longer you live, the more “protected status” you are in the workplace), becomes a liability after a while. I’m at that age where people start to get sick. Their bodies start to break down. Their minds start to go.

So, why would they keep someone like me around?

And why would I stay? Seriously. Why? If there is anything else I can do with myself, that will earn me a living, I should seek it out and do it. Get the hell out of the tech scene, with its stupidly long hours, its constant sitting/standing, its perpetual upheaval and disruption. That’s what it’s about, in any case, and it’s actually not what I’m about.

So, whether or not I’m let go today, I’ve got my Plan B in process. This job cannot be the be-all-to-end-all for me. No way, no how. I need more to my life, and I need to create that new direction for myself — not expect someone else to provide me with the opportunities.

I lost sight of that for the past three months, thinking that this job was going to tide me over for the next five years, at least. Now, nothing is certain. Nothing is fine. I wish to God I could find work that will let me just settle in and play my part for the long-term, but it’s becoming clear that I’m going to have to create that situation myself.

Anyway, it’s all very exciting. And it’s all a learning experience. Fortunately, my job involves work I really enjoy and that makes me good money, so I can focus on doing the things I know will translate into good money later on, and keep my head out of worst-case-scenario land.

Business as usual. Not usual at all. Which is usual.

Just have to stay steady in my own mind.


Learning along the way

Getting back to my regular life is hitting me, about now. Thank heavens it’s a long weekend. If I had to go to work tomorrow, I’m not sure what I’d do.

No, I know what I’d do. I’d go to work. Because that’s what I do.

I’m really feeling the effects of jet lag, right about now. Yesterday was a really challenging day, because I was starting to really get hit hard by the fatigue, the change of time zones, the change of pacing to my everyday life. I can function, absolutely. But it knocks the stuffing out of me, for sure.

Not that it stopped me, yesterday. I had a really good, fully day, actually. I did a lot of cleanup around the house, and I spent about 4 hours helping my spouse pack for a short business trip that they needed a lot of supplies and equipment for. It seemed to me that the amount of work going into preparation far exceeded they payoff, but from what I hear, the trip was a success and many of the goals were accomplished, so maybe it was worth it, after all.

I started to seriously run out of steam around noontime yesterday. That was with 2-1/2 hours of intense preparation still to go. I had been going since 10:00, and I was beat. I just wanted to lie down. Crash. But I kept going. I focused on what needed to be done, and I did it. And I didn’t get all caught up in my resentments and tiredness and anxiety and frustration about being back from a really demanding trip and having to do even more work for someone else — work that had nothing to do with me, really, but that I had to help happen, or it wasn’t going to happen at all.

In the past, I have gotten dragged down in that thinking, and that head trip just pulls all my energy away from what really matters and what’s most important. The important thing is to just get things done, just do the job, just get everything squared away, as only I can. I can’t let anger and resentment and fatigue get the upper hand. I just have to buckle down and push on.

Which is what I did yesterday. And even though I was even more beat, by the time I was done, I actually felt really good about it. I had gotten a ton of exercise, after a relatively sedentary trip. And I had definitely gotten the blood pumping, which I’ve been needing. All the activity got me out into the day, doing something constructive, and it got me moving in my own space, at my own home, on my own turf.

Which was nice. Because I have really missed my home, while traveling. I miss my schedule, I miss my own bed, I miss my routine. I am such a creature of habit, that when I have to turn everything upside-down, it turns me upside-down, as well. Finding my balance again, during and after travel… well, that’s a challenge. But I’m learning better all the time about how to do this thing.

After all, it really is a learning experience. I’m learning how to handle things better and better. I’m developing new skills in adapting and finding opportunity that I can make the most of. And I’m acclimating to the idea that all of life around me is really a classroom I report to each and every day. I have to go to class, but it’s my choice how much I engage, and what I learn along the way.

I tend to think about change with a mixture of dread and hostility. Because it’s threatening my way of thinking and living and my sense of self. I have never been a fan of change, but I think that’s because I always saw it as something that either happened to me or was done to me. “Change” is something I usually think of as separate from me. It’s a set of circumstances beyond my control that I have to adapt to, or else.

Change has long been a sword of Damocles hanging over my head, suspended by a very thin thread, with no guarantee that I’ll be able to successfully adapt to it.

That’s not been particularly helpful to me in my life. It’s made me brittle and rigid and inflexible, and it’s helped make me a lot less happy than I could have been, all these years.

But in fact, when I think about it, change is really nothing more than a learning experience. It’s just a shifting set of conditions that we can learn to maneuver through, just as we’d learn to drive a car or ride a bike. Driving a car and riding a bike are two things many of us learn to do, as a matter of course in our lives. And there are a ton of other things we need to learn, in order to be happy and productive in the world.

We don’t kick and fight and scream about learning to do those things — like ride a bike and drive a car and read and write and (some of us) swim. We go through the steps we need to take, to learn to do them, and some of us learn to do them better than others. Some just show up and put in the minimum required effort and come away with some modicum of ability. Others really apply themselves and think long and hard about the best way of doing things and develop mad skills that put others to shame. In any case, it’s up to us, what level of effort and attention we put into mastering our new skills. Even those who struggle to learn and adapt, can find ways to do so — or find compensatory techniques to aid them in the absence of innate ability.

The same is true of the changes that take place in our lives and our circumstances. We have to re-train ourselves and our minds. We have to learn how to do different things in established ways, or do old things in new and different ways. We have to acquire new skills and perspectives that help us make sense of our circumstances. We have to learn what doesn’t work, as well — what holds us back and drains our energy.

In any case, it’s all learning. It’s identifying new patterns and developing new ways of dealing with them successfully. The changes we face are not life conspiring against us to make us miserable. They’re not a plot by some nefarious foe who seeks to do us harm (well, sometimes it is, but it’s not very productive to dwell on that — fixating on that just takes up more time and energy, which makes it harder to come up with new and different approaches). They’re opportunities to reset our mindset and develop new abilities that make us more complete human beings.

So, that being said, I have a lot I need to learn and re-learn, these days. The big lesson at this moment right now, is how to deal with jet lag. I think I’m dealing with it pretty well, but I feel terrible in the process. I’m functional and I’m able to work pretty well, but I feel like crap, which is a real challenge for my frame of mind. Maybe I just need to expect this, and plan for it. Not get too much on my plate, and be sure to take time to rest and relax.

Yesterday was a hard day for that, because I had so much to do. And I have a lot of catching up around the house. It will get done. I have to believe that. I just can’t skimp on my sleep. Gotta take care of business — and that includes resting up. A lot. Because this coming week is a short one, but I have even more to do.

So, there’s another opportunity to learn.



I don’t think winter is ever going to end

But I’m actually fine with it. I know, it sounds bizarre – this should be over. We should all get a break from the cold, the snow/rain/wintry mix, and be able to get on with our lives.

And yet, this is our life. All of it. The seasons. The weather. The delays. The difficulties.

It’s just how it is, sometimes.

I’m fine with it.

Because I’ve come to expect it. By now, I’ve become a bit acclimated to these weather extremes… the teasers of warmer weather, followed by arctic blasts. And it’s to the point now where rather than resist and revile it, I’m actually enjoying myself as I clean the slop out of my garage and pull my coat closer around me as I go from the house to the car.

I’ve written before about how familiar it feels, when we have to all slow down, and how dealing with my own issues has helped me to learn to deal with limitations that drive other people nuts. And 2 weeks later, I still feel the same way (which isn’t necessarily a given). It’s true. I do feel like I’m better equipped to deal with setbacks, disappointments, and general thwarting of my intentions, than a lot of “normal” folks who just assume their faculties are never going to fail them — at least, not yet, anyway. Not till they get “old”.

For me, I never quite know when my faculties are going to come through, and when they’re going to fail me. My energy levels yo-yo all over the place, leaving me feeling energized one minute and exhausted the next. My balance can turn out just plain wrong at any given point, leaving me staggering around for something to hold onto. And I’m never quite certain how tolerant I’m going to be of light and sound and touch.

I just roll with it. I don’t have many other options.

Speaking of being wiped out, I just had a wave of weariness hit me. I keep mistyping the words, so I think it’s time to stop. I’m making chicken stew this evening. My spouse is out of town, and I’m on my own. So, it’s stew on the stove, and maybe a little nap to get my strength up enough to eat.






Pacing is everything

Better plug in soon
Better plug in soon

Okay, so I’ve got the majority of the hell-work out of the way for my day-job, and I’m itching to get back to the other projects I’ve had going on the side. Up until about three weeks ago, I was able to juggle everything pretty well, coordinating my schedule so that I could do a whole lot in relatively little time.

Then things got insane with the day-job and I had to drop a lot of other things I was working on. Not fun. It was pretty much non-stop focus on those two massive deadlines I was balancing. I got it done as much as humanly possible, and the most important things were completed on time. Unfortunately, there were numerous links in the chain that broke, for one reason or another, so it wasn’t a seamless, uninterrupted process, and I’ve been wrangling with leftover issues for the past several days.

But the bottom line is, I made the deadline, and life is good. Pretty much.

Now I’m eager to get back to what I was doing before, but I’ve got to check myself. I’m pretty well exhausted by everything that went on, and I’m just not myself these days. I’ve been running on adrenaline for weeks — and I’m still pretty amped-up, since little things still keep breaking — so I’m in no shape to get back to doing the things I was doing before, all at top speed.

I need time to rest, relax, and recharge my batteries. If I had a battery indicator on me, it would be flashing red, with a little tiny stripe of power left at the bottom. I’ve still got some juice, but I need to do some serious recovery, before I get back into things.

And that’s hard. Because the other things I’m working on, really bring me a lot of satisfaction and happiness. And they are time-sensitive, too, so I really need to keep on track. But seriously, if I dive back into everything right away, it could get really ugly really quick. And there is too much riding on the other things, for me to just rush it.

So, here are my priorities:

  1. Rest and relax and rejuvenate and recharge. Recover. Not later. Right away.
  2. Do an assessment, while I am on vacation next week, of what I’ve accomplished and where I am going, and what I need to get done, so I am clear, moving forward.
  3. Get back to my routine and my regular schedule that lets me do a lot in relatively little time. That includes regular exercise and good nutrition.
  4. Focus on updating my resume and cover letter, and reach out to headhunters and recruiters with my most current information.
  5. Take care of everything that needs to be taken care of in my current job, tie up the loose ends, and get ready to go.
  6. Take good care of myself, so that when I am presented with more opportunities, I am in decent shape to respond positively.

That should do it for the short term. I really need to get myself on good footing, before I head off into the sunset. There’s no point in me starting on a bad note, and if I push too hard too soon, that’s what can happen.

Looking for a new job can be extremely challenging and anxiety-producing. So can starting a new business. I need to be the strongest I can be, to make the most of the opportunities.

And now, off to start the rest of my day.


After TBI: That house has burned to the ground

And now you’re going to have to move.

Seriously. The structure of your life is toast (literally and figuratively), and there’s no point in trying to move back in. Sure, you can try – you can pick up whatever you have left and set down on top of the old footprint of the structure, expecting things to return to normal. But when the rain and snow and wind come, there’s no point in being surprised.

Your house has burned, and you’re going to have to find a new way to live.

Now, you may say, “Oh, but my TBI was a mild one. It’s just a concussion, and it’s no big deal. My doctor says I’ll be fine in no time.” To believe that is a mistake. Doctors may know precious little, other than how to keep from getting sued, and the popular “wisdom” on mild TBI/concussion is anything but wisdom. Just because you can’t see what’s in there, doesn’t mean it’s not going to give you problems. There are millions of individual little miniscule connections that make up the sum total of who you are and how you live in the world, and when even a few of them get stretched and frayed and torn, it can wreak havoc on your life, just like a little crack in a dam can cause the whole structure to become unstable.

Not to worry, though. It is fixable. Not fixable as in — “I can make it all go back to how it was.” That is pretty much of a waste of time. You might as well accept it, because that’s the deal. Depending on your situation, for many years in the future — even the rest of your life — you can find yourself re-discovering how differently your brain functions, compared to before.

The point is: So What?

Seriously. Let it go. Get to work coming up with something new and different for yourself. It makes no sense to get stuck in the past, mooning over how awesome things used to be. If you’re honest with yourself, you will find a ton of things that weren’t awesome at all — some of which may have actually contributed to your brain injury / concussion. I think that after TBI there’s a huge temptation to get stuck in rigid thinking and have this unrealistically rosy view of before. I know I had it for quite some time, till someone asked me point-blank if things were really all that great, once upon a time, and then asked me to think of some examples when things weren’t that awesome.

And when I thought about it, I realized that my life had been pretty much of a mad scramble just to keep ahead of the sh*tstorm that seemed always about to burst open over my head. Okay, so I can chalk a lot of that up to prior TBIs, not to mention all the mental health issues that I literally gave myself, because of how I was thinking about my life.

The point is, I had it in my head that things were so awesome prior to my TBI in 2004, but they weren’t that way at all. Yes, I had more money. But not so much more. Yes, I had a career. But I actually couldn’t stand a lot of people I was working with, and I hated my mega-corporate employer with a blue-flame burning rage. Yes, I was more social. But the people I was hanging out with were victims and very unwell in their own rights.

If anything, TBI lowered my tolerance of all sorts of bullsh*t, which is actually one of the benefits of getting smashed in the head hard enough to turn your life upside down.

Once I got past the idea that everything was hunky-dory, and that I was only functional before, things started to loosen up. Of course, it’s taken me a long time — years — to let that fully sink in, but at least I got off to a start, a few years back.

The other thing that’s taken me a long time to come to terms with, is the fact of how much things have really changed with me — and how much they need to change. For the longest time, I was bound and determined to “bounce back” and get back to where I was before. The only thing is, where I was before, wasn’t actually so great, and it’s not where I want to be in the future. In a way, it was like I was living in a house that had a lot of structural and logistical problems, which I got used to working around and living with. And a mild case of Stockholm Syndrome set in, where I not only got used to dealing with the crap, but I also decided that I just loved it all that way, and I was lucky to have it.

Oh, how untrue. Turns out, I was accommodating a lot of BS that I never should have, and I was in relationships and work situations that just did not suit me very well at all. Only when I became incapable of sustaining the huge amount of energy and effort required to keep myself contorted in all those miserable accommodations, did I start to break out of that old shell. It has been hugely painful and frustrating and frightening and anxiety-producing, but oh well. At least I can see more clearly now, just how un-right things were before.

No matter how attached I was to that old way of living… no matter how convinced I have been that it was amazing and fantastic and awesome, etc… no matter how invested I was in keeping things the old way… the fact of the matter is that a lot needed to change. And it was going to eventually. Whether through brain injury or mid-life crisis or some other life event, it was all going to have to change.

And I see now that one of the things that’s held me back the most, has been my reluctance to drop what came before and try to create something new. The weird thing with TBI is now it can jack up your fight-flight response. I think that’s for two reasons — 1) TBI does affect the autonomic nervous system, the part of our system that “toggles” us between overdrive and chill, and it can jam our accelerators in place, like a floor mat on the gas pedal of a Prius. 2) Dealing with all the differences from how things were before can be a constant source of surprise and shock. One experience after another goes wrong, for no apparent reason, and you can end up seriously on-edge, constantly trying to keep up with what’s going on around you, constantly trying to figure sh*t out, that just doesn’t make any sense.

What happens when we’re in that constant state of overdrive and reaction, is that our brains become less able to learn. And we end up not learning the valuable lessons that we need, in order to alter our brain structures and develop new pathways and new patterns that we can rely on. I’m not sure that any of us ever feels “the same” after we’ve seemingly fully recovered from TBI. I’m not sure any of us ever gets to that point of feeling like our old selves — it takes some a lot of adjusting to the sensation of not having a clue what is going on, but going ahead and taking action anyway.

But if you can get past the uncertainty and make peace with the fact of feeling confused and baffled and constantly playing catch-up, and you can find it in yourself to keep going, anyway, you can put your life back into something new and different.

You just have to realize your house has burned down. And it’s time to move.

Yes, move. The first and most important thing I will say to anyone who has sustained a traumatic brain injury — especially mild TBI or concussion — is that you have to get moving. You have to exercise. If you never did before, now is the time to develop that interest and acquire that skill. You’re going to have a whole bunch of “sludge” in your system, both from the biochemical cascades that happen with concussion/TBI, where the cells of your brain become deluged with chemicals intended to help them cope with the injury.

BestPractice has a writeup on Concussion, including the pathophysiology, which sheds a lot of light on things:

The biochemical cascade of concussion is marked by an initial period of indiscriminate neurotransmitter release and unchecked ionic fluxes. [20] Excitatory neurotransmitters, such as glutamate, bind to N-methyl-D-aspartate receptors leading to further neuronal depolarisation with the influx of calcium and the efflux of potassium. These ionic shifts lead to acute and sub-acute changes in cellular metabolism and physiology. Acutely, the sodium-potassium pump works overtime to restore a homeostatic balance, requiring increasing amounts of adenosine triphosphate and a corresponding increase in glucose metabolism. This hypermetabolic state co-occurs with diminished cerebral blood flow. The disparity in energy balance and the tendency to restore ionic balance is met with the decrease in blood flow, creating a cellular energy crisis that is suspected to be the mechanism for post-concussive vulnerability, leaving the brain more vulnerable to a second injury and potentially longer-lasting, more severe deficits. After this initial period of hypermetabolism, the brain goes into a state of hypometabolism where the persistent increase of calcium may be responsible for impairing mitochondria, further affecting cellular metabolism and neural integrity, worsening the energy crisis, and potentially affecting post-traumatic neural connectivity. [20]

Axonal compression and stretching is also thought to be a major injury mechanism, creating a focal abnormality on the surface membrane of the axon within hours of injury, sufficient to impair axoplasmic transport, resulting in oedema. View image The swollen axon then separates, with the proximal section remaining attached to the cell body while the distal end undergoes phagocytosis by neighbouring glial cells. Axonal swellings may persist unchanged, or regeneration may occur over several weeks. If axons do not regenerate, reactive deafferentation may occur. [21]

Neuro-imaging studies using functional MRI suggest that a depressed mood after concussion may reflect an underlying pathophysiological abnormality consistent with a limbic-frontal model of depression. [21] [22]

That sludge stays in the system after the injury has occurred, and in my reading (and experience) I’ve become convinced that concussion/TBI disrupts brain and body function not only in the days after the injury, but over the long term. I read something a while back about how the gunk that gets poured into brain cells continues to stay around (I can’t remember where I read it – I may have a copy of it on my hard drive).

Bottom line is, when you sustain a TBI/concussion, your cells get flooded with all sorts of interesting crap, blood flow slows down, and together, this contributes to a buildup of gunk in your cells, which bog them down — and can also make you feel incredibly depressed. If your brain continues to carry that increased biochemical load, it doesn’t help matters.

What can help? Exercise. Plain and simple. Getting the blood pumping — or at least just moving more — will help the cells clean themselves out and renew. Fresh blood, fresh oxygen, fresh biochemistry helps to not only relieve the burden from the cells, but also to stimulate new growth — which is exactly what you want. You get double the benefit — and not only physically, but mentally and emotionally as well. A refreshed brain can rebuild not only its internal connections, but also the life around it. A renewed brain leads to a renewed life. What can be wrong with that?

Seriously. After TBI, you’ve got to move. Your doctor may tell you to take it easy till after symptoms pass, but sometimes symptoms don’t pass until after you start to exercise. Use your best judgment and check in with yourself to see how things are going — just don’t make a lot of excuses about reasons you shouldn’t take action on your own behalf.

Get up. Get moving. I don’t care if it’s taking the stairs instead of the elevator, if it’s getting up to putter around the kitchen during commercial breaks, if it’s going for a walk around the block. You’ve got to move. Just get up and do it. Your brain will thank you for it. And so will your life.

Change can be good

WordPress has changed their interface for managing blogs, and I like the change. It makes sense. It actually makes the screen easier to read and helps keep me focused on the center part of the page, where I am writing my post(s). The outside navigation (which has nothing to do with what I’m writing) is a different color — it’s “reversed”, in fact, being black with white type, instead of gray and white with black/blue type.

This makes it easier – cuts down on visual confusion, and it keeps my eyes focused on the center of the page.

I didn’t fully realize just how disruptive it was, having everything the same colors, until they changed it. Now I have a palpable sense of relief.

Nice work, WordPress!

This reaction of mine is quite different from the past. In years gone by, I would have gotten upset over a change to something that is familiar to me. Any kind of change would throw me for a loop, and I would lash out at whoever had thrown me off balance. When I was a kid, I had *such* a hard time with any kind of change. The problem was, I lived in situations where there was constant change. Nothing ever stayed the same. I had different classmates in school, every single year, and none of my friends really stayed around that long – either they moved away, or my family did.

So, change and I haven’t always been on good terms.

Now, things are very, very different. I think it has a lot to do with learning how to take the edge off my anxiety and stress — with breathing and also with just letting everything go silent and still for a couple of minutes. Taking a breath and just stopping… before I react to something. That’s important. We live in a world where instant reaction is prized, but for me, that’s a recipe for more stress and suffering.

So, I’m training myself to not go there.

Real progress. And I can truly enjoy the changes around me — like this WordPress upgrade that simply rocks.

Finding “normal” again, after all the … TBI “stuff”

So much depends on our view point

Okay, I know that when it comes to recovering from traumatic brain injury, the concept of “new normal” is not my favorite. I have heard so much advice from well-meaning individuals to “accept your limitations” and “get used to things not being as good as they used to be”.

Please. I’m not saying anything more than that, other than that.


Even the concept of “normal” is not my favorite. I think especially when it’s defined by others, it can be a trap that’s almost impossible to get out of. So, let me define “normal” for these purposes as being a state of mind and body and spirit that is balanced and feels usual — a way of experiencing and being in the world that doesn’t freak you out and put you on edge and make you miserable or anxious… but is part of your regular everyday life. It doesn’t have to do with others’ definitions of how you should being, but rather it’s about how you know yourself to be — and accept yourself. “Normal” life can include stresses that are customary and expected in the course of your everyday life. It can also include an incredible sense of well-being, in spite of all obstacles or difficulties you must overcome.

That’s where I’m at today — it’s not a “new normal” for me. It’s a new take on the old “normal” that used to be part of my everyday world. It’s taken a lot of work and time and energy, but it’s happening for me.

I wish it could happen for more people. Too many individuals give up too quickly, too soon, in the face of seemingly “permanent” conditions — those supposedly “it is what it is” circumstances are anything but permanent. But life is impermanent by nature. Nothing stays the same. And the only reason things remain permanently “effed up”, is if we just stop trying to turn them around.

That’s what so many of us do after a hard loss — whether it be the loss of a loved one, a job, a home, a planned future, and yes, the “normal” life we had before TBI. We just give up. Or we decide that we’re not really cut out for a regular life anymore, because either we don’t deserve it, or we don’t think we can deal with it, or we can’t see our way through to the other side, or we simply run out of steam and get way too tired to deal with much of anything.

And then we adjust to our “new normal” and hope for the best. As though that will help anything.

To me, that kind of acceptance is murderous. It is the exact opposite of what we should be doing after TBI, or any other kind of hard loss. The brain is “plastic” — it adapts and changes based on our surroundings and what we demand of it, and it needs to be retrained. It needs a lot of rest and water and glucose (and I suspect that the main reason for my splitting headache this morning, is because I didn’t give it enough of any of those three things all day yesterday), but if it receives the right TLC, it can — and will — learn to do new things in new ways — or learn to do old things in new ways.

See, that’s the thing — with TBI your thinking can get very rigid and literal and stubborn, and your brain can start telling you that there is ONE WAY AND ONLY ONE WAY TO DO THINGS (and yes, it will tell you that in a very loud voice). The old ways were “right” and the new ways are “wrong”. The old ways were the “only” way, and the new ways will “never work”.

Silly. There is never only one way to do things. There is never only one right way to get from Point A to Point B. There are lots of different ways — we just need to take it upon ourselves to find those different ways, and train our brains to handle life in a slightly different way.

Of course, you tend to get tired, in the midst of all of this. And when you get tired, your brain tends to work less well. That’s a struggle I’ve had for years. However recently, I’ve discovered a way to mitigate the effect of fatigue. It’s not that I’m less tired — I’m pretty wiped out, right now. But I don’t get as bent out of shape over being tired, as I used to. I recognize it, I take it in stride, and I get on with my life anyway. I do what I can, when I can, and I don’t worry about the supposed disaster that may come on the heels of being wiped out and mentally out of it.

I just accept the fact that I’m dog-tired, and I deal with it. I live my life anyway. If I can catch up on my sleep, then great. If I can’t, I don’t worry about it. I factor in the fatigue in my daily life, and I make the necessary adjustments.  I can tell that things aren’t nearly as peachy as they used to be for me. I can tell when I’m a lot less sharp than when I’m rested. And I can really tell when fatigue is really chipping away at my patience, my self-control, my manners. But I don’t let it derail me like I used to. It’s not a tragedy anymore. It’s a pain in my ass that I just need to recognize and deal with, and do the best I can in spite of it all.

This is a monster change for me. The whole realm of physiological after-effects of TBI really threw me for a loop for a long time. I have been hung up on how much my cognitive state suffers from fatigue and stress and anxiety and physical pain. I guess it was pride, really — I don’t want to seem stupid or be the brunt of others’ jokes and ridicule, and when I’m tired and in pain and not doing well, I’ve not been able to handle myself well in the past, so I’ve ended up taking a lot of sh*t from people who didn’t know better. And so, when I would be over-tired, or in pain, or practically deaf from the ringing in my ears, or dealing with some other TBI-related problem, it would make me really anxious and upset… which made everything worse.

In the past months, however, I’ve let a lot of that go. Maybe I just let the whole pride thing go, because I realized it wasn’t worth it, and the only one who has really been keeping tabs has been me. I think that stretching my back and neck on a regular basis has been very good for me. When I crack my back or neck (and it doesn’t take much – I just need to bend or lean in different directions), I get this rush of really great energy and relief, like my brain is actually able to communicate with the rest of my body through my spine. And my head clears, I’m less foggy, and suddenly the colors are a lot brighter than they used to be.


Also, I shifted my focus away from remediation of my issues (like trying to catch up on my sleep after the fact), to the Bigger Picture — just living my life the best I can, under all conditions, good or bad. I’ve gone from managing every single aspect of my day…. to letting it all just fly free… to learning how to pick and choose the things I’m going to concentrate on each day. I’ve trained myself pretty well to do the basics again. I can get myself out of bed, have my breakfast, and get ready for work without losing my temper or forgetting if I’ve washed my hair. I’ve figured out how to get myself to work without incidents from my light and noise sensitivities, and I’ve figured out how to structure my days so that I’m doing the things I care most about when I’m the freshest and most with-it.

Now that I’ve got that basic functionality down, I’ve been focusing on relaxing and getting myself in a good space… or, if I’m not in a good space, realizing it and training myself to just deal with it. I used to be pretty good at keeping it together under 85% of difficult conditions. Then, after my TBI in 2004, that slipped to about 15% of difficult conditions, and that’s when my life started to fall apart.

I would say now that I’m getting closer to that 85% I used to be at. I’d say I’m probably doing pretty well under about 75-80% of difficult conditions — I’m not yet performing at my peak, but I’m holding it together and keeping my sh*t together much better than in recent memory, and I’m not having hardly any of the meltdowns that I was having, only a few years ago.

Which is good. I had a bit of a blow-up, the other night when I grilled up some killer steaks, and my spouse decided to take a shower just when all the food was ready to be served. I ended up with a tough piece of meat, because they waited till the last minute to do something they could have done all day, and I lost it. I lost it even more when they acted like I had no reason or right to be upset. I had a long day at work. I was hungry. It was late. I just wanted to enjoy my steak. But no… Oh, never mind. What’s done is done. The thing I need to realize and remember is that sometimes I have every right to be upset, and sometimes I am going to get upset. It’s just that I can’t let it take over and run me the way it used to. I need to let it be about being upset — not being upset about being upset, which is what gets me. And after all is said and done, I definitely have to let it go. And see how I can possibly avoid that next time.

Management issues. Hm.

Well, speaking of management issues, I’ve got to get going and get into my day. I’ve been working on my “stress hardiness” training — consciously trying to toughen myself up and not be so sensitive to the ups and downs of the everyday. I’ve got to get tougher, that’s for sure. Not “ram tough” and all aggressive and over-the-top, but resilient and able to take a hit without collapsing into a heap. I need to get a thicker skin and do better about just dealing with stuff, instead of letting it take over my head and make me crazy. I used to be like that — as I said, 85% of the time. And I am getting better at it.

It’s all about conscious practice — training myself to deal. In some ways, I feel like when I was a kid, and I was learning to do all kinds of things, like handle myself in the adult world. That’s how it feels right now, and while it is kind of strange and deja-vu, it’s like I get a second chance to learn how to do all this stuff. The “first time around”, when I was dealing with TBI stuff and didn’t realize it, so much of what I learned was inaccurate or just plain wrong.

Now I get a “do-over” and I can get my act together in ways that I thought I was before, but actually wasn’t. I can take a new shot at things and lay another foundation for myself, starting from scratch in many ways. It sounds strange to me — I’m nearly 50 years old, and I feel like a 10-year-old kid. But in so many ways, all of us needs to reinvent ourself in one way or another over the course of our lives. Some of us have to do it many times over. So, it’s not so strange or unusual. It’s actually pretty normal — perhaps the most normal thing of all, when it comes to being human.

I think maybe this is what my neuropsych has been trying to explain to me for years, now — that it’s in the nature of human beings to change and grow over time. We don’t always have a say in the areas where we need to change and grow, but we do have a say in how much we accept and adapt to that need for change, and the energy and determination we bring to that change.

How we define “normal” is up to us — if we don’t do it ourselves, someone else’s “normal” can end up defining us.


The magical learning loop

Look – learn – act – look – and learn again

Speaking of re-adjusting and recalibrating, I had an epiphany in the grocery store the other evening, when I was picking up supper after a long day of yard work. I was dog-tired from working, I was a bit banged-up from moving and lifting and hauling, but I felt great. As I was walking through the store, I was getting sort of confused, not being sure where I was or where I was going. No biggie. It happens. I get disoriented for a few seconds — usually because I’m overwhelmed with the bright lights and the activity around me and fatigue — so I stop what I’m doing, I take a few breaths, I look at my list, and I continue on. This happened several times, and after the 2nd or 3rd time, I realized that it really wasn’t bothering me. I was so friggin’ tired (I worked my ass off on Saturday and never got the nap I needed), and I was out of it and spaced out and disoriented and feeling like a zonked out zombie. But it didn’t bother me. I just dealt with it.

This is a huge change from how things used to be — I used to get so worked up and bent out of shape about this kind of stuff. I would get anxious and nervous, my heart would start to pound, my head would start to race, and I’d have all these crazy thoughts running wild in my brain. It would practically incapacitate me, and it just freaked me out. And in the process, things would get even worse than they already were. And I’d be even more disoriented, confused, and forgetful.

But yesterday it didn’t. It just sort of was what it was… I knew I was tired — and for a very good reason. I knew that when I get tired I get forgetful and spaced out. I also noticed that there were a lot of people around me who were in really crappy shape — the father who couldn’t keep his kids in line without yelling at them… the guy who was all over the produce section with his cart… the ladies who were so engrossed in the displays that they blocked the aisle with their carts and wouldn’t let anyone pass… everybody was sort of at their wits’ end — probably for the same reason I was — we’d all been working our asses off for the past two days, maybe longer.

At the same time, the folks who worked in the store were very cool. They greeted me like they knew me, even though I didn’t recognize them. Maybe I should have recognized them – I don’t know. All I know is that they were very pleasant and personable, and it’s always nice to have someone greet you and treat you like a decent human being.

I also noticed that I was really relaxed. I mean, really relaxed. I was tired, yes. I was out of my head, yes. But I was relaxed and chilled out and putting out a vibe of real confidence and calm. I was dropping stuff left and right, bumping into things, forgetting things, not knowing where I was or what I was doing, here and there. But it wasn’t bothering me. I just kept going. I just kept on keeping on.

And it worked.

Not only did I pick up all the supper items on my list, but I also remembered a bunch of other things we needed, and I came home with two full bags of groceries that we needed for the coming week. Score.

And then I went out and seeded my lawn — at least, that’s what I thought I was doing… until I realized that I’d bought fertilizer earlier that day, not seed. And I was going to miss the opportunity to seed my messed up lawn before the rain comes later this week. That really threw me for a loop – I had it carefully planned, how I’d rake up all the dead grass, then seed, and water, and then I would be done for a few days.

Except that I didn’t buy grass seed.

After getting a little tweaked over it, I let that go and just decided to fertilize my lawn instead. God knows, it needs it. So, I got out my spreader, gave my lawn a nice dose of fertilizer, and watered afterwards. It wasn’t a total waste, and in fact, it’s probably an even better idea than seeding right off the bat. I just picked up seed the next day, when I was less tired and could read and comprehend the labels on the bags — which was giving me a LOT of trouble at the hardware store the day I bought the fertilizer — I could hardly comprehend anything I was reading, and the words weren’t making any sense to me. But I got in and out without too much drama.

Anyway, this is something new for me — not only taking steps to avoid issues, but learning how to gracefully handle the times when issues are in my face and unavoidable. For as long as I can remember, I’ve been pretty focused on keeping bad things from happening. A huge amount of anxiety has followed me everywhere in life because of that. But now I’m getting the hang of not having the screw-ups really screw me up — just learning my lesson, dealing with what comes up, and getting on with the next thing.

Just keeping moving. Learning. Living. Using what I learn in that “learning loop” and taking things to the next step without missing a beat. Paying attention to the feedback that comes from the world around me and finding the pieces that will help me get to the next level — or just to the next step.

And trusting that I will be able to apply what I’ve learned in a way that makes things better the next time.

Back from the edge-yness

Rigidity… taking over my mind and life?

I realized something weird, recently – how rigid and inflexible I got after my last TBI. It’s bizarre, really, when I think about it. It’s just not “me”. It’s not the way I want to be or the person I recognize as myself. And it’s probably one of the biggest changes in my personality that I’ve experienced. It’s been pretty rough for my family and co-workers — and it’s been a challenge for me, because it’s the kind of thing that seems like a good idea at the time, but is really anything but.

I used to be pretty bold and daring and willing to push the envelope. I used to be cool and cool-headed in a crisis — any crisis. It didn’t matter what got thrown at me — I was up for it. No matter what. I would just be there. I would just do it. I would just — you know, BE. And DO.

When I fell in 2004, that pretty much shattered. And all the coolness went out the window – poof! The weird thing was, I didn’t care. I didn’t care that I was a mess, that I was a simpering, weepy, foggy, hostile asshole, who couldn’t seem to figure sh*t out. I just went along like I was fine, and everything was falling apart around me. The worst thing was, I got incredibly rigid — brittle, inflexible, stuck. Things had to be done a certain way, or I would snap. I would just freak out. If I dropped something, I would blow up. If something got messed up, I would fly off the handle. If things didn’t turn out exactly like I wanted them to, I would lose it.

It’s been a real problem with me and my family, co-workers, just about everybody who’s had to deal with me. And I’ve felt like a real reject, as a result. Because part of me knew that how I was acting was really wrong, yet I couldn’t figure out the cause of it or how to address it. Dealing with it has been a two-fold process:

  1. Dealing with the loss of the old ways I used to be, and how easy it used to be for me to chill and not get all uptight over every little thing. And forgiving myself for being so rigid and difficult to live with.
  2. Learning new ways that I can get some flexibility back — mostly physiological ones: exercise and breathing — along with things like self-talk and taking time-outs when things are getting heavy. And staying open to the new things I’m learning – the new ways I’m learning to live.

Now I’ve got more information. And I have developed more coping skills. I’ve got new tools I can use. And I use them. And that’s good. Things have chilled tremendously, since I have been deliberately practicing being more flexible, and since I learned how to relax. It’s been like night and day. Just doing regular breathing exercises (lately, more in-the-moment than first thing each and every morning) has helped. Ironically, getting off that obligatory daily regimen of focused breathing has helped me. Because that rigid discipline… maybe it works for monks in a monastery, but it was making me even more tense.

Funny how that goes – the very thing that used to help me, started to get in my way. And when I changed it, it helped me even more.

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