#6 Thing I wish they’d told me after my concussion(s)

6. All of this is going to make you feel very, very tired.

TBI / concussion can make you feel wiped out.

TBI / concussion symptoms can drain you.

The sleep thing again…

I’m repeating myself, because it’s that important.

Fatigue is one of the top complaints of people who have sustained a brain injury. For some, it resolves in a matter of weeks or months, for others (myself included), it goes on for years. Giving yourself a chance to heal up front is probably a good idea.

TBI / concussion can make you feel wiped out.

When your brain is going haywire and it’s sending strange messages to your body, and your body is hyper-sensitive to just about everything… it’s exhausting. I spent years in a near-constant state of exhaustion. I had maybe a few good hours in the morning, then I was done.

Especially at the start, when your brain is figuring everything out – it feels like for the first time – you can end up feeling fried before you get half-way through the day. I drank way too much coffee for years, just to keep going. I didn’t understand what the problem was. I just knew I was exhausted, and I had to keep going.

You may need to sleep more than usual. If you can get it – take the opportunity. I functioned for years on exhaustion, because I had no choice. I had no access to public benefits, and if I didn’t work, I didn’t eat or have a home. So, I worked. Through the exhaustion. It was no fun at all – for me, or for my loved ones. We all paid a steep price for my fatigue.

What to do?

Sleep is precious. It helps your brain clear out the gunk that gets released when it gets injured, and it restores your sanity. Get as much sleep as you can, whenever you can.

You may feel like a loser for needing so much sleep, and/or others might call you a “slacker”, but they don’t live with your brain. You do. Give it a break. Give yourself a chance to feel human again.

no-x-outAlso, consider cutting back on all the stuff you think you need to do.

A lot of us stay busy, just because everyone else does it, or it makes us feel more productive and needed. In the end, you might be productive and needed, but you still feel like death-warmed-over. It’s up to you, but I’ve found that cutting back on all my customary activities was a magical relief.

All the “friends” I used to have? They’re still running on their hamster wheels. And they’re no happier now, than when I departed from their midst.

Getting back the calm – regardless

Photo credit: Myshelle Congeries

Photo credit: Myshelle Congeries

Before my TBI in 2004, my weekends were a combination of busy-ness and calm. It seemed like I had unlimited energy, and I could pack a lot into each weekend, including studying things that fascinated me and taking long walks in the woods and working in my yard and doing chores around the house and working on my personal projects and cooking a nice supper.

Yesterday, I did two of those things – a few chores around the house and yardwork. My lawn desperately needed to be mowed. I had not taken a mower to it in over a month. The grass was high. But perhaps waiting so long was for the best, because at the beginning of the summer, huge patches of grass were gone, thanks to grubs. I’ve had grub problems for a number of years, but this year it was particularly bad, with much of my front yard bare patches of dirt. I can’t use any pesticides on my lawn, because I am on a well, and I don’t want it getting into my drinking water. Plus, I tend to spaz a little bit, when I am handling poisons and dangerous objects. I have sudden spasms that make me jump, and then I hurt myself or get the chemicals on my hands or on my face. Not good.

So, I looked around online and found a recipe for mixing mouthwash with alcohol and water and laundry detergent, and I sprayed the grubby patches liberally. Then I put down grass seed and watered it a little bit, and let nature take its course. Within a month, I had a lawn full of thick grass, which I just let grow, to get its root system in place. I didn’t want the grass to have to put a lot of energy into regrowing the blades, and use more of its energy for growing roots.

So, I let it be. And the results are pretty danged good.

No more bare spots.

Of course, yesterday I was sure I’d wrecked my mower a couple of times, as it stalled on the thick, high grass. It must have stalled at least 5-10 times, and each time I wasn’t sure it would start again. But it did. And I was able to cut my lawn relatively even, in the end. I’ll need to make another quick pass today, but I got the job done as I could, under the circumstances.

No 8-inch mohawk.

I also did some cleaning around the house. My spouse has mobility issues, so they can’t do a lot of cleaning, so that falls to me. I did a thorough wipe-down of the half-bath downstairs, and I cleaned the grungiest parts of the full bathroom upstairs. I was seriously low on energy, yesterday, but I did get something done. I also did some more organizing in my study — to the point where I’m comfortable being in the room again. It’s been so messy for so long, I haven’t wanted to spend any time here. That’s different, now, though. And I’m much more comfortable here than I’ve been for quite some time.

I also have more ideas for how to better organize it – I have the right sized boxes that I can slide under my bed to keep a lot of my books that I don’t want to look at anymore. I don’t want to get rid of them. I just need more space. Having those boxes gives me more options. And I can use more options.

The question is – and book-lovers will totally get this – which books do I put away? They are all my “friends”  that have special memories associated with them. I’m not sure I want to make those memories disappear from sight.

Alternatively, I could get bigger bookshelves for my study. That might be a good idea.

Book decisions aside, today I am focusing seeking calm. Chilling out my system, so I can relax. I have been pretty uptight for the last couple of weeks – partly because I’m back to helping my spouse with packing and planning for their events every weekend, which can be pretty stressful for me. It’s putting an even bigger load on my system than usual, and I need to find ways to offset that. Things like getting back into my sitting practice… making sure I stretch… getting out in nature when I can… and keeping their crazy-nuttiness from affecting me.

I’ve gotta work on that “CN (Crazy-Nuttiness) Defense” pretty actively. Because it’s really all around me. CN is around me at work, it’s around me whenever I interact with other people. And if I’m not careful, it drives my blood pressure up, which gives me a headache. I’ve been getting more headaches, lately, which is disappointing. But it also shows me that I need to take corrective action.

After all, I can’t expect the rest of the world to accommodate me. And if I know what to do, to keep myself healthy and safe and sane, then it’s really on me to do just that, whenever the situation calls for it.

I also need to be mindful of those times when I am tired and out of sorts and I am more likely to respond intensely to something that normally wouldn’t bother me. My spouse has a habit of starting really energized conversations about good experiences, and then when the conversation is just about to conclude, switching gears to be critical or find fault or start getting really negative about someone or something. They don’t see it as negative – they get a big energy charge out of it. But to me it just sounds like they’re exhaling smog, and I start to choke on it.

I know why they do it – neurologically, they rely on a “negative” charge to get their adrenaline going, so they feel more alert. They are feeling good when they’re talking about good things, and when they start to run out of energy, they resort to negative criticism and adrenaline to “keep the party going” — predictable standard-issue behavior for them.

And if I’m tired (from the animated conversation we just had), I get really angry and upset when they start being critical and talking about behaviors and choices I don’t agree with. It’s insidious — and it always catches me by surprise, just how quickly they can change gears. And it’s a sign of their cognitive issues that they do this — which makes me even more upset.

End result: migraine.

So, I need to step away and catch my breath, slow down my racing heart and calm down my over-wired system. I have to get away from them as soon as possible, so I can breathe freely again… and when I’m calm, I can come back, but not before. Sometimes that takes a while. And that makes my spouse very anxious. They see it as having to do with my brain injury, rather than their own cognitive impairment. Their perseveration seems completely justified to them, and it makes me physically ill to think about what’s causing that — and how they’re not doing all that much to slow down the process.

Cerebrovascular dementia is not much fun. Especially watching it happen to someone you love who is unable to help themself deal with it. Add to that panic-anxiety issues, and it makes it all but impossible to discuss. And if you can’t talk about it, you can’t figure out what’s really going on — and you can’t do anything about it. It’s so critical to control your blood sugar and your moods, so you don’t “blow out” your system. Long-term elevated blood sugar compromises the vascular system. And high blood pressure puts additional strain on an already weakened system. NONE of this is good for the brain.

My spouse also believes that they only have a few more years to live, so they are putting a lot of pressure on me to travel with them before they die. I don’t have a million hours of vacation saved up, so there’s only so much I can do. It’s actually the pressure of them constantly talking about where we’re going to travel and when and how we’ll do it, that weighs me down.

It may be a vacation for them, but it’s an awful lot of work for me. They don’t see it, however. All they see is what they want and how they can get it. Nobody else really matters that much to them, when they’re locked on the target of getting what they “need”.

I have a feeling I’m going to be blogging about my spouse’s decline a good deal, in the coming years. It’s ironic that, no sooner do feel like I’m back on track with my life and I feel like myself again, than my spouse begins to decline. But it does put me in a better position to A) respond appropriately to them, and B) try to educate and raise awareness with others about what the deal is with stroke, vascular dementia, diabetes, and how they all conspire to ruin lives.

Bottom line: Diabetes weakens the vascular system. It weakens the walls of the blood vessels over time. Unregulated blood sugar can make you get crazy about little things, which drives your blood pressure up. That doesn’t bode well for blood vessels that are weakened. And since the brain has so many, many blood vessels, it’s one of the first places that things start to break down, small bleeds happen, cells die, and your cognition gets f*cked. Lack of exercise doesn’t help. The body needs to be moved and challenged to stay strong, and it also needs exercise to clear out the gunk that builds up from stress and other environmental “pollutants”. So, if you don’t ever move, your body isn’t going to get the movement it needs to keep healthy.  And if you never move, you can’t keep strong so that you’re able to keep your balance — that puts you at risk for a fall, which may include a bone break or a TBI. None of this is good.

But I’m getting off a tangent. More — much more — on that later.

Anyway, like I said, I can’t expect the rest of the world to accommodate me. Life will run its course. I just need to find calm in the midst, find ways to keep the joy in the midst of others’ pain… to keep calm in the center of the storm. My own internal life is my own space – and that is the only space I have any control over, whatsoever.

fukitolI need to make a point of taking very good care of myself. Take my dose of “Fukitol” and head for the great outdoors. Or, if I have to stay inside, keep that mindset of being outdoors and not really giving a damn about what other people do, say, or choose to do with their lives.

That being said, it’s time for a walk in the woods. I do have the energy for that, this morning. No guarantees on what’s happening later today.

For now… off I go.

Onward!

 

 

How things change

Getting it all sorted out

Getting it all sorted out

I’m cleaning up my home office, getting rid of a whole lot of junk stuff I have collected over the years.

To be fair, it’s not actually “junk” — it’s just leftovers from years gone by, which are no longer needed. I used to need these things. Or, in some cases, I thought I was going to need them, but it turned out, I didn’t. Lots of scrap paper… lots of cardboard I used to use for packing, when I was sending things to people. Lots of old equipment that needs to go to “technology heaven”.

And look… there’s the coupon for $10 off my next $50 spent at the hardware store. It’s good for another 3 days. That will come in handy — especially if I actually make it to the hardware store this weekend. I should. I have a number of things I need to pick up, and my garage needs to be cleaned out for the impending fall. Right now, it’s got too much stuff — and junk — taking up the space that my car should fill.

I’m feeling a little frustrated, right now. A lot of what I’m finding is a reminder of how much I have had to let go of. Or all the things that I had such hopes for, and never managed to make happen. I was really convinced, for so many years, that I was going to make all these dreams come true. But I never reckoned with the reality of fatigue, confusion, frustrations, and the constant toll that TBI-related stress and distraction takes on a person, day after day after day.

A number of objects in my office are from my spouse, and looking at them all, seeing how many things I’ve been given, which don’t actually suit my personality… or seeing how many of them were given to me in good faith (which I never followed through on)… that’s a little depressing, too. It’s a little disconcerting to have so many reminders that your significant other has never really understood you — and probably never will.

Then again, who ever really understands anyone? And in the midst of the sorting, I find one reminder after another of our bond — birthday cards, Valentine’s Day cards, little notes left for me that say “I love you!”… that’s really what matters. Everything else seems a best guess to me, anyway.

And I realize I am at a significant juncture in my life. I’m finally at a place, where I can relax and settle into my work, because it suits me, all across the board. For decades, I was not committed to my “day job” other than as a way to make a living and pay for the expenses of everyday life. I wasn’t invested in the least. I mean, it was hard to feel invested about anything in technology, back when the Web was first starting up. Nobody knew how it was going to go, if it would last, if it was “a thing”. It took many years for that to be proven, and now it’s a given.

And now, after so many years of work and pioneering and opening the frontier, the world I helped to create — as one tiny cog in a massive machine that has an intelligence all its own — I finally feel invested in it all. Because I connected with a company that’s invested in me. It really is remarkable, after so many years of being treated like I’m disposable, expendable, interchangeable. Like I didn’t matter, and nobody cared. The people around me cared, sure, but at the management level, it was all too Darwinian and it wasn’t at all conducive to getting the best performance out of the people who were committed to doing the work.

They didn’t even seem to realize that we were committed to doing the work. They just treated us like we showed up each day to earn a paycheck, and that was it. Eventually, no matter how much more it may all mean to you, if you’re treated that way, day in and day out, you can end up slipping into that mindset, yourself.

What a waste.

And for years — decades, really — my life was driven by a profound need to be more than just a cog in the machine, a plug in a hole that would have leaked if it weren’t plugged. I spent so, so many hours trying to fill that void left by my day job, seeking with every fiber and ounce to actually express myself in a way that made me “me”. It was a constant struggle to prove my identity, to prove my worth, to know that I was more than what I was treated like, day in and day out.

I wanted more, I needed more. I had to have it.

So, I created it myself. I carved out a niche for myself in my own life with constant work, constant writing, constant creation. I volunteered. I got involved in groups. I had an active life outside work, and I crammed a whole lot of stuff into it.

And for years, that worked. It just felt normal and right and free. As long as I was free, that’s all that mattered to me.

But then I fell and hit my head. And the freedom went away. It just seemed to evaporate overnight, and everything that had felt smooth and sensical, just turned into mush. I lost my spark. I lost the joy. I lost the passion that comes from within — it was replaced by a manic stress response that was fueled by pure adrenaline that came from post-traumatic stress, life-and-death choices, a long series of bad decisions that either trashed or threatened to destroy so much that I had worked so hard for.

The energy and passion I’d had before, which was always accompanied by hope, was replaced by rage and fear and anxiety. On the surface, it looked like I was still engaged and energetic, but inside I was a tangled mass of nerves.

Big difference from before. My fuel was not hope, but desperation. Confusion. Frustration. And the need to have enough stress in my life to keep my attention focused on what was in front of me.

The last 10 years have been a chaotic blur. A blur, because everything has seemed to happen so fast – and yet so slowly – and chaotic, because I could not figure out what was going on inside my head and outside of it, too. So much confusion. So much dancing on the edge of disaster — often without realizing it. So many poor decisions, so many knee-jerk reactions that cost me so much. Since 2004, I had 11 different positions – more, if you count changing roles within organizations. That’s more than one job change a year – I hopped from one position the next four times in about a year, back in 2008, without knowing why. Part of it was just bad decision-making, part of it was anxiety, part of it was not being able to function and needing to “skip town” before people found out how incompetent I was at the job I’d signed up for.

In the meantime, there were the marital troubles, the money shortage, the creditors knocking down my door and blowing up my cell phone, the logistical troubles, the health problems and cognitive decline of my spouse… Yeah, it’s been a wild ride.

And looking around me at my office, I see so many relics of the years before 2004, when everything seemed so simple and straightforward, and I was content to be living as I was. Back when my spouse was still healthy and working. Back when I was good with where I was, and everything just progressed and unfolded without concern for the future. Back before everything started to fall apart.

I’m cleaning up, now. I’m getting rid of the old stuff that I no longer want or need. And I’m saving what I can still use. The post-it notes that were given to me at a past job, when the company changed its branding and they had all these extra supplies to get rid of. The paper clips and butterfly clips. The pens I can still use. The notes I made, some time ago, about ideas that still interest me. Much of this I can still use.

But in a very different frame of mind. A relaxed frame of mind. A state of mind that makes it possible for me to settle in and concentrate — and not worry constantly about the outcome. A frame of mind that  have not had in so many years. It’s more than relaxed. It’s at ease.

Finally, I can settle in and just enjoy my life again.

Not that things are completely event-less. Lately, there have been unfortunate losses in my family, a bunch of my friends lost their jobs, and things are not hunky-dory, all across the board. But my frame of mind is very different, now. And while I don’t much care for the tragedy, I can handle it without going off the deep end. I can walk through the crises without letting them wreck me, too. Whatever happens now, I feel as though I’m up to the challenge.

I know how to think things through.

I know how to break things down and take my time and work through them from start to finish.

I used to have that ability, years ago, then it went away. Now, ten years later, it’s back.

And that makes all the difference.

So, the day is waiting.

Onward.

Taking it all in

When the fruit is ripe - pick it... and enjoy

When the fruit is ripe – pick it… and enjoy

Constantly striving and struggling takes a toll. It takes an enormous toll, in terms of energy and insight and being able to enjoy your life. When you’re constantly GO-ing, when you’re focused on being active and reactive and pro-active, you lose sight of the good that you can let in.

Sometimes you lose the ability to let it all in. There’s a lot of good in the world, but we can be so busy fighting and pushing, that we’ve got nothing left for just sitting back and letting the good things be good — and enjoying the fruits of our labors. It’s no fun, being literally unable to reap what you’ve sown.

It’s like being a farmer in a country that never has a summer or fall. It’s work-work-work, year-round, without any hope of harvest. I used to know a farmer who lived in a northern area that had something like three months of growing season.  There was snow on the ground from September till May, and then the ground had to thaw. He was not a happy farmer. He was exhausted. Eventually, his barn burned, and he had to move.

I’m a bit like that farmer — but sort of by my own making. I have been pushing and striving and struggling for such a long time. Damage control. Chasing my dreams. Making the products of my imagination become real. And all that pushing has seriously worn me down… to the point where some days I can’t see the point of anything, anymore.

Then something occurred to me yesterday, when I was feeling down and blah:

I am actually living my dream.

See, when I was a kid, all I wanted to do, was be a writer. I wanted to write things that were helpful to others and provided insight into everyday life. I also wanted to be free of editorial control, so others would not tell me what to write, what to say (or not say), and I could do so on my own terms.

My goal for many, many years, was to become a freelance writer. And for a while I was doing that. But I ran up against problems with editors and schedules, and I could never seem to finish a job properly. Whether it was a freelance editing job, or it was technical writing, I was just not good at being independent and keeping it together.

I wanted to be independent. How I wanted that! And for a while, I was. On and off, I have “done my independent thing” and taken contract jobs, while managing freelance projects on the side. That’s what people did in my world of technology. And that’s what I did, too.

But it was always a struggle. And my writing wasn’t helped by the pressure to make ends meet.

For so many years, I felt like a permanent job was a millstone around my neck, that I was going to be pulled down by companies that didn’t know how to run themselves. That was actually the case for years, because I worked at companies that just couldn’t seem to figure it out. Now those companies no longer exist.

And for some reason, I thought that ALL companies were like that. Because that’s all I’d ever known.

So, for a long, long time, it was a double-whammy of pressure to make ends meet with companies that couldn’t keep their act together, the pressure to make it on my own — on m own terms — and the struggle to find the time and opportunity to write. I have written almost daily for decades, now, and it’s the one constant in my life. So, dealing with the pressures at work and all the existential difficulties that go with trying to make ends meet, keeping the dream of writing alive was pretty much a challenge.

It’s not that I couldn’t write. It just didn’t feel like I was a writer. It felt more like a task, than an art, and I lost touch with so much insight, over the years, because I was so stressed. If it wasn’t problems at work, it was  problems after another concussion — and the two fed each other, actually. I didn’t have the same sense of writing that I’d had in my 20s, before I had the mortgage and disabled spouse to provide for. It was nowhere to be found, and I thought the only way to get out of that was to get going on my own terms and live the dream of total, complete independence.

Well, now things are very different. And although the company I’m working for now is going through its own reorganization (who isn’t?), and my job and position may be very different in another 6 months, I feel more independent than ever before. It’s not so much the company, as it is my position. The job I have now is truly on par with the work I’ve done in the past, which is nothing short of amazing. I thought that sort of position would never come ’round again. I thought I was toast. But now I know I’m not, and I have the opportunity to focus on a whole new type of work that demands expertise and skill in much the same way that my programming did in the past.

And the best part is, while I am bone tired by the end of the day, it’s a good tired, and while it does wear me out, it also energizes me and gives me real hope for my future.

Plus, I can write again. I mean, I have been writing — a lot — for a number of years on this blog. And there’s no lack of projects I have in various stages of completion. But now it actually feels like I’m writing. It’s actually sinking in.

It’s important to let it all in, if only every now and then. It’s the thing that lets us see that all we’ve been working for, is actually paying off. That there is something to show for our efforts.

It’s important to let that happen.

So our world can open up again, and we can know that all is not in vain.

I actually got that done…

Cause for celebration – I have finally successfully navigated figuring out how to terminate extra insurance coverage I have not needed for over a month. For the longest time, I wasn’t sure where to start, or whom to call, but I sat down and made a careful list of steps and the phone numbers I needed to call. Then I got folks on the phone who would repeat things to me, till I had it all straight.

I just typed up and emailed out two letters that ended $750+ of expenses each month. It feels pretty awesome.

Of course, there are still other expenses, and I still have to pay something for the benefits I have from my new job, but it’s a fraction of what I have been paying.

I still have to take care of a few other things, which are even more complicated. My spouse gets government assistance, so now I have to sort through that special bureaucracy… not looking forward to that, but this evening gives me a much-needed boost.

Onward.

When all the excitement calms down

Just keep going...

Just keep going…

I’ve been in a kind of a funk, for the past few days. I just haven’t felt very energized.

I had a very busy weekend, with a lot going on, and I know I’m a bit behind on my sleep. But even when I do get some rest, I feel blah and slightly disconnected from my life.

I’m settling into my job, and that feels good. I’m settling into my routine, and that feels good, too. I’m working out or going for a swim, 3-4 times a week, and I feel pretty good, other than the aches and pains that come with the changing barometric pressure. My bank account is not at $0 anymore, and that feels great. I’m working through changing over my insurance, with a couple of different hoops to jump through, thanks to various insurance plans I’ve had over the years that I can now let go of. I’m fitting right in at the office, connecting with people and learning the lay of the land.

I just haven’t had the energy or felt the same engagement that I felt in the past.

Everything now is kind of “flat”. It’s solid and it’s stable, and it’s all wide open with a lot of possibilities. And it’s disorienting.  A little disconcerting. Like I’m walking across a prairie with long rolling hills,as far as the eye can see. Off in the distance, I can see proverbial mountains, but they never seem to get any closer. I just keep walking and walking and walking… hoping that eventually I’ll reach whatever destination I’m supposed to be at.

This is how it feels when I’m not going a million miles an hour in damage-control mode. When I’m not constantly reacting to problems and not on a perpetual hamster wheel of crisis, everything feels flat and featureless. I’m sure I’m not alone in this. Going from constant stress to having almost no stress at all, is a biochemical let-down, and the prompts that kept me alert, when everything was sh*ttier than sh*t, just aren’t there anymore to keep me charged up.

I know that life is good, the problems I thought would never disappear have faded into the background, and I am hugely grateful for it.

But I feel like I’ve got no gas in my tank, and everything just feels gray and bleary.

And that makes me feel even stranger. Like I’m a blank.

I know where this comes from. It’s a by-product of PTSD. I had a lot of trauma growing up, and I spent the first half of my childhood in a pretty dangerous environment, so my system has been wired for stress from the start. I was bullied as a kid on a number of occasions — all through 5th grade and 7th grade (I got a “year off” in between), bunches of kids ganged up on me and really punished me for being “weird”. And all the TBIs certainly didn’t help. That’s all the more trauma to add to the mix. Not much fun.

My adult life has been spent living pretty much on the edge. I have no idea what it’s like to be able to plan for retirement, because I’ve never had enough money in the bank for long enough to ever think that would be possible. The most I have hoped for, is not ending up crazy, on the streets, eating dog food.

It sounds a little nuts to me, as I sit here in my nice house (not palatial, but nice enough), with a good job, two cars in the driveway, and a respectable resume. But beneath the surface of this respectable life, there is no financial safety net, a declining spouse with encroaching cognitive impairment, parents who are also declining and expect me to care for them, and an uncertain job market that could take yet another hit from stock market fluctuations.

So, it would be fair and accurate to say my life has its share of stress — especially if I dwell on all of the above, which I choose not to.

I’m coming out of a number of years of intense pressure and trauma and post-traumatic stress. Workplace changes, health changes, my spouse getting more marginal by the month, and watching people around me make genuinely unhelpful choices with their lives… it all takes a toll. Add to that a lack of job stability and the ongoing feeling that I’m hung out on a limb and being played for a fool by the overlords at work, and it adds to the challenge.

The intensity gave me energy for the fight. It kept me going. It felt like it kept me sharp. Over time, existential stress wears you down and wrecks your system, but when it’s at full-speed, it makes you feel like you’re really alive. Traumatic stress is tricky like that – it promises you one thing, but delivers another… and ultimately, that lie can kill. I had a level of intensity that put people off for as long as I can remember. Only my bosses, who knew how to harness it, didn’t have a problem with it — unless, of course, I directed it against them. Then they weren’t so pleased.

Now that things aren’t intense like that anymore, that source of “energy” is gone, and I’m feeling deflated and a little depressed. It’s taking my system time to get used to it, and all the while it is disorienting — and a little stressful in its own right.

So, what to do? I can’t go back to that old level of traumatic stress. Not only is it not good for me, but I’m hip to its lies — it’s not the source of energy my system thinks it is. It’s making me more stupid with each passing day, not smarter, like it tells me. I’m onto it. It can’t fool me, anymore.

What are my options?

What's there in the details?

What’s there in the details?

Mainly… Focus. Keep my focus trained on the little things around me, and keep myself engaged and active in some way or another.

My patience is short with people who fritter their time away on whatever-ness and get overly busy and overly riled about every little thing, so I need to keep from even thinking about them. There are so many of them, and I don’t share the love of drama. Not anymore.

This kind of focus and letting go of all the imaginary recreational drama can be lonely. Social media is full of people who are “in it for the fight”, while my chief objective is to back off the whole fight thing and give my system a chance to right itself. When you aren’t all caught up in the push-pull, what can you talk about with people? If you don’t want to fight, and you don’t want to constantly promote your “personal brand” and take a stand on this, that, or the other thing… what can you do in the everyday world?

There’s not much draw for me, frankly. And I feel myself pulling away from a lot of the discussions and interactions from before. I understand it, and I know it’s important to people, but I just can’t be bothered with it, any longer.

I have what I need. I am what I need. There’s no need to fight, because I understand how things work around me, and it’s no longer necessary to constantly push and pull and drive and strive, to get where I’m going.

And stepping away from that drama, that boiling cauldron… it takes practice. It can be lonely.

I’m sure I’m not the only one who feels this way. I’m sure there are others I can connect with who are experiencing the same thing. I’m getting away from the old milieu I’ve worked and lived in for so many, many years… just part of maturing and growing up and out, perhaps? And I’m sure I’m not the only one.

I guess it’s just going to take some time for me to find another “ecosystem” to blend in with. Because the old one isn’t doing it for me.

Time is something I have.  Time to start looking around — up, down, left, right, out, in — for what’s next…

#5 Thing I wish they’d told me after my concussion(s)

5. You are probably going to be more distracted than usual.

Everything looks important

Everything looks important

Brain injury can make people very distractable. In my case, I am very light and noise sensitive, so on bad days, every passing shadow or bright light or sound catches my attention. With all the excitatory neurochemicals loose in our brains after concussion, our brains are on high-alert, and that can make us instantly notice tons of details that don’t mean a thing.

Your brain can get confused and not always know what details it should be paying attention to. It can get confused about what it really important and what it can safely ignore.

And because you have so much rattling ’round in your head, you might have more trouble remembering things — especially important things, like dates and schedules and appointments.

It actually takes a lot of brain power to notice lots of details and know what to pay attention to, and it takes special attention to commit things to memory. If your brain is so busy noticing everything and categorizing it without understanding what’s really going on, it’s not going to have a lot of bandwidth to devote to memorizing critical things.

Concussion / TBI is stressful, and stress make us more distracted than usual. It puts us on “high alert” where we think everything is important and needs to be noticed. This is a huge energy drain, and it tires you out even more.

A tired brain is a distractable brain.

And distraction makes the brain work harder, as it tries to “track” all the different pieces of information and put them in some kind of order – which makes it even more tired.

See the irony?

Yes, you’re right. It does suck.

What to do?

Again… sleep. Get plenty of rest. Your brain needs to heal, and pushing the envelope isn’t going to help. A tired brain is a distractable brain, so the less tired it is, the better your chances.

There are exercises you can do to increase your focus. Puzzles can help, and some online training supposedly helps, as well.

Meditation and mindfulness are highly recommended. They can literally alter the structure of the brain and strengthen the areas for focus.

Be careful of medication. Some meds actually make the brain more tired (some anti-depressants), which doesn’t help with concentration after a brain injury. Other meds will get you cranked up to high speed, which can fry your system. Be careful with meds, even over the counter ones. And talk to your doctor, if you’re concerned.

#4 Thing I wish they’d told me after my concussion(s)

4. Your ability to plan and follow through may be affected, and you might not be able to make good judgments.

You may think it's safe to drive... when it's not

You may think it’s safe to drive… when it’s not

One of the worst things about TBI is that it can hide itself very well from the very people who are having trouble. An injured brain doesn’t always know it’s injured, and it usually wants to jump back in the action before it’s ready.

But it doesn’t know it’s not ready, because it can’t tell that it’s injured.

If you remember nothing else, at least remember this:

... And then this happens

… And then this happens

After concussion, your brain will usually over-estimate your ability to do regular things again. And it will often tell you that you can do things even better than before… but you can’t.

I wish someone had told me about this danger after so many of my concussions.

Of course, even if they had, I probably wouldn’t have believed them. I interviewed for jobs that were far, far above my professional grade. Somehow, I was convinced that if another person could do the job of a C-level executive, I could, too. I told interviewers that I was capable of becoming an executive at companies where I had little to no experience because, “If they can do it, so can I.”

If you think I got a lot of strange looks at job interviews… you’re right.

I also had many close calls after making poor judgments around people carrying guns.

I nearly got myself killed while walking down a deer path in the early morning hours during deer hunting season, wearing no bright colors, and actually wanting to blend in like deer, so I could catch sight of one. I was nearly shot by a hunter, who pulled up before he pulled the trigger.

I also got into numerous scrapes with police officers, because I misunderstood what they were saying to me, and I got aggressive in response. I’ve resisted arrest, went out of my way to get confrontational with armed officers, and I’ve barely escaped a number of close calls with jail, thanks to lack of impulse control and terrible judgment – thanks to all those TBIs I’ve sustained.

And that’s just scratching the surface. I can tell you from plenty of personal experience that brain injury screws with your ability to think clearly and make good decisions.

This is to be expected. It’s completely normal for people who sustain concussions / TBIs.

Planning and good decision-making are some of the top casualties in brain injury, for a number of reasons:

A) You’re not getting all the info you need to make good choices.

B) The thinking process that decides what’s good or bad may be impaired.

C) You might not have the energy or patience to sort through all the details and come up with a good plan.

D) Your impulse control might not be great, so you jump into things before you think them through.

E) You may be extremely anxious, which makes you do things too quickly – or not at all.

There are plenty more reasons, but these are the Big Five that cause many problems.

Basically, you may find pieces of information missing, here and there… or you may not pick up on every detail that you need to make the right decisions.

It’s kind of like a contestant in a beauty pageant who has a salad for lunch and then is so caught up in thinking about her hair and her dress, that she doesn’t check her teeth in the mirror before she goes out for the next round on stage. The camera pans across the line of smiling contestants, and there she is with a big piece of dark green spinach on her teeth.

Not good. Chances are, her shot at the title is gone.

Even if you really, really want to do the right thing in the right way, your brain might not be up to the task of doing it… yet. Here’s why:

The frontal lobes – the very front of the brain in your forehead above your eyes – is the part of the brain that helps us plan our lives, follow through, and make wise decisions. And because it’s out there in front, it’s especially susceptible to injury.

Double-whammy

Double-whammy

Even if you get hit in the back of the head – like when you get rear-ended in traffic – your brain can smack up against the inside of the front of your skull. This is not good news for anyone, because the inside of the skull is sharp and bony, and the brain is soft like Jell-O.

When your executive function is impaired, your brain can get you into a ton of really bad scrapes. That includes telling yourself that you’re ready to get back into playing, working, or learning long before you’re ready to. It also includes telling yourself that you’re a lot better at something than you are.

Impaired executive function can go hand-in-hand with impaired risk assessment (where you can’t really tell how dangerous a situation is before jumping in), so you can put yourself in real danger without realizing it.

Some examples:

  • Getting back into extreme sports when your coordination and timing are not nearly as good as they used to be.
  • Starting classes again and taking even harder ones than before, when your brain isn’t processing info as well as it once was.
  • Taking up a new sport you never played before and trying to jump to expert level participation right away.
  • Getting involved with illegal activities.
  • Confronting an armed motorist who’s caught up in road rage.

These can all get you hurt. They can also get you killed. But if your executive function is impaired, you’re not exactly qualified to make those kinds of decisions.

One of the biggest problems with brain injury / concussion is that it also tricks you into thinking that there’s no problem at all with your thinking. You’re sure that you’re fine!

This special brand of confusion is so common that there’s even a word for not knowing that you don’t know you’re impaired: anosognosia.

Your brain can be so injured that it’s literally incapable of telling how good or bad it is at…well, anything. This is common after stroke, as well as more serious brain injuries.

And it’s very, very dangerous. Combine poor judgment with the impatience and anxiety that often comes with TBI, and you have a powder keg just waiting to go off.

It’s nobody’s fault, and it doesn’t mean there’s something wrong with you, if you keep making bone-headed mistakes.

It just means that part of your brain that’s responsible for “executive functioning” is impaired and needs some help.

What to do?

In many concussions, poor judgment is either temporary or it can be offset by some help from other people or tools you can use.

The most important thing is to understand that your brain can – and will – play tricks on you after a concussion or TBI. It doesn’t mean you’re permanently damaged, it just means you need to re-train that part of your brain to A) slow down to notice the right details, and B) get in the habit of thinking things through.

If you’ve got friends to bounce ideas off, this is the best time to use them.

If you don’t have friends in the “real world” (they may have ditched you after your injury, or you might be isolated by your problems), you can find online support groups who can help you sort things out.

Also, there are professionals who can help you with your decision-making. You may be able to find a counselor or neuropsychologist who can help you retrain your brain to think more systematically and come up with better solutions to problems.

The best thing you can probably do, is reach out for help. Because your brain is going to tell you some interesting things – many of those things may be 100% wrong… but you’ll never know it, because your brain doesn’t.

Spent the day writing, yesterday

Didn't write quite this much, but by the end of the day, it felt like it.

Didn’t write quite this much, but by the end of the day, it felt like it.

And I did a basic “brain dump” of what I feel is the most important information to pass along about the Top 10 Things I Wish They’d Told Me About Concussion(s). I basically wrote a short book – an eBook, really. I’m not sure if I’m going to make a print version. Maybe I will. With space for notes.

It felt good to spend the day just writing. It’s been a long time since I last did that. I had to take care of a couple of things in the afternoon, but I put in some good time, and I’m happy with the result. I’m posting the chapters, one by one, and I’ll post a link to the book when I’m satisfied with it.

The main thing I did, which was important, was actually finishing the work before I walked away. I have a bad habit of diving into something, then getting tired and getting distracted and walking away… never to return.

I did NOT want to do that, this time, so I just stuck with it. I tuckered myself out, but good. But it was worth it.

This is the new way I am doing things, now. I have less time available to me, so I have to make choices. And I know that if I walk away from something, I might never come back. So…

I’ll have a number of different options for people to buy. I’ll put it on Amazon, and I’ll also post it with Lulu and Kindle and other places, so people can get to it. Also, I’ll offer a couple of different prices for folks who want to support the blog. And of course I’ll have a PDF and an ePub version that people can download for free, if they are really short on money.

I’ve been there. I know what it’s like to have to choose between food and non-negotiable necessities like rent and medicine. And people with TBI frequently have to make exactly those choices.

So, there it is, my work for the weekend. It was a busy one, but it was good. I’m settling in at my job and getting used to my new routine.

It’s all good.

#3 Thing I wish they’d told me after my concussion(s)

3. Your brain has changed.

It's like this

It’s like this

Concussion changes the brain.

First, it floods it with chemicals that aren’t supposed to be where they go. And sometimes those chemicals can actually damage healthy cells.

The connections that used to get information from one place to the next can be altered.

Depending on the type of concussion, there can be bleeding, twisting, or shearing of connections, that make it harder for information to get where it needs to go.

Concussion is like a microburst that suddenly appears in a normally quiet neighborhood, blowing out windows, uprooting shrubbery and trees, pulling down power and cable lines, tossing lawn furniture into the street, and seriously rearranging the garbage cans that were neatly lined along the driveway. Even a quick hit or a “ding” can do some real damage.

Clearing out the gunk that gets loose in your brain is a lot like clearing the wreckage after a microburst. First you have to pick up all the loose trash, then you have cut apart the trees that pulled down the power lines. Only after you get the big trees out and stand up the poles, can you tell if the electricity and phone lines are still any good.

Maybe some of them are fine.

Maybe others got pulled out of their connections, and utility crews need to just tighten them up.

And maybe some of the wires got so frayed and torn that they need to be replaced. That replacement takes time. New crews need to be called in. Maybe a crew isn’t available, or they don’t have the needed parts. The neighborhood is going to be out of power and cable for a bit.

That’s basically how it is after a concussion / TBI. Sometimes that proverbial microburst does damage to the actual connections in your brain.

And if you’ve had a prior concussion (or two or three – or nine, like me), your brain can have an even harder time getting information from one place to the next.

Imagine a neighborhood that’s had a lot of storms that knocked out power. Utilities crews have patched up the connections many, many times – and each time the connection gets a little easier to damage, because all the loosening and tightening and adjusting puts a strain on the materials used. Screws get stripped. Casings on cables get thin. Wires get twisted and re-twisted, weakening them in the process. Connectors get overloaded with additional cables. And while the system does restart, with each new storm, the power goes out that much more easily.

That’s pretty much what it’s like with repeat concussions.

Connections in the brain aren’t the only thing that can suffer after getting your bell rung.

When the information crosses the wires and actually gets where it’s going, the “microprocessors” that used to figure out what to do with it may have altered.

Our brains are incredibly complex, and they process billions upon billions of pieces of data on a moment-by-moment basis. When our neurochemical process is messed up, it can make it harder to figure out what to do with the information that comes through over our stressed “wiring”.

Too much for our systems to take at one time

Too much for our systems to take at one time

Let’s go back to that neighborhood that got hit by the microburst.

When the utility crews finally have the electricity back on, and cable is restored, can life go back to normal immediately?

Not if everyone in the neighborhood is exhausted from the cleanup. Even if you do have electricity and cable, surfing the channels is going to be a challenge, if you’re wiped out from all the hauling and cutting and cleanup efforts. You’ll have cable back, but when you use the remote, you fingers will hit the wrong buttons and you might have trouble reading the listings on your t.v. screen. If you’re getting on Facebook, you might have trouble typing or understanding what others have posted, because you’re so tired.

Even though you have electricity and cable, you still have trouble using them.

And that’s how it can be in your brain after concussion. Even if the information is getting through from synapse to synapse, once it gets there, the synapses may not know how to handle the info correctly.

As a result, your noggin isn’t processing things the way it used to.

It can feel a lot sssssllllllllooooooowwwwwerrrrrrrr.

You can feel like life is moving in slow motion.

And in a way, it is. Because the thing that observes and interprets your life is not firing on all cylinders. Not yet, anyway.

You can feel like you’re walking around in a fog. And you are. Remember the “gunk” that got released in your brain? It takes a while to clear it out, and in the meantime, your brain is struggling to connect the dots in your daily life – with connections that don’t work like they used to.

What to do?

Again, getting plenty of sleep, water, and nutritious food are really good for you.

Probably the most important thing is to avoid stress.

Stress is a killer. It limits the brain’s ability to learn – which is exactly what it needs to do after a concussion / TBI. Stress can put you in fight-flight mode that makes you aggressive and combative – which can get you into even more trouble with people like the authorities or other people who just want to fight.

Whatever you do for yourself after concussion, you’ve got to take it easy on yourself and give yourself plenty of time to get back. You can get back. Lots of people have gotten injured like you, and the majority of them have returned to their regular lives. TBI and concussion are extremely common, so rest assured you’re in good company.

Unfortunately, stress goes hand-in-hand with TBI and concussion. I can’t tell you how to stop the stress, but I can tell you how to limit the negative effects.

Deep Relaxation has been unbelievably helpful for me, over the past years. For a long, long time, I had no interest in relaxation. I hated to relax, in fact. Turns out, I just didn’t know how. But I found a recording for progressive relaxation that I could listen to, and it helped me train myself to let go of all the stress and feel normal again.

You might not be able to stop the stresses of life, but you can stop the negative effect it has on you.

Take your injury seriously and give yourself time to recover. And learn to offset the stress to your system with rest and relaxation.