Looking back – what I’ve lost, what I’ve gained, what I’m giving back

surfers coming out of the end of a tube
We can do this

A little over a year ago, the neuropsych I’d been working with since 2008 changed jobs and relocated. It was a pretty big change for me. This was the person who’d agreed to work with me, when everyone else around me said there was nothing wrong with me, and I was just looking for attention. This individual saw something in me that they knew was in desperate need of help, and they were in a position to help me. That was rare.

Nobody, but nobody else, believed me, when I tried to tell them how much I was struggling. They didn’t seem to care that I’d lost a really good job and that I was bouncing around from one situation to another (they seemed to think I should just be grateful that I could work at all).

Nobody seemed to care that I’d parted ways with hundreds of thousands of dollars in hard-earned performance stock options and retirement savings (they seemed to think I was being greedy to want that much money).

Heck, I’m not sure anybody even believed me when I told them how much money I’d gotten, thanks to busting my ass for years and years at one of the top financial services companies on the planet. They looked at me, in my post-TBI state, and they drew very different conclusions.

Nobody seemed to realize just how rocky my marriage had become. Even I didn’t realize that. I couldn’t detect any great love for my spouse, for years at a time. I was married because, well, that’s what I was. But I harbored no great affection for this person I’d lived with for nearly 20 years, and when my neuropsych asked me if I loved them, I just shrugged and said, “I guess so.”

Nobody seemed to believe me at all, when I talked about how my skill level was a fraction of what it once was. I used to be an incredibly gifted programmer, and if you have money in a retirement account, you’re probably using websites I personally helped design and build. (You’re welcome.) The people I worked with all knew that. I was a legend in their midst. A folk hero. A thought leader — a leader, period. But nobody outside my very narrow professional sphere actually got that. They didn’t realize. Because they weren’t smart or experienced or in-the-know enough to actually get it. Nothing against them. They just didn’t get it. At all.

My neuropsych did, however. I mean, for the most part. I think they were pretty skeptical when I’d was eloquent about all the amazing things I used to be able to do. And they never seemed that sympathetic, when I bemoaned the loss of those former “chops”.  But we had a pretty good working rapport, overall, and I’d made some fantastic progress, thanks to being able to check in with them, each week. I developed my own ways of rehabbing my brain — and my life. I kicked ass, to be honest. And in 40 years of working in TBI rehab, they said they’d never seen a recovery as dramatic as mine.

They had fairly low expectations of me, when I started working with them. But they didn’t know me, yet. And they had no idea what all I was capable of doing. They found out. And when they moved on, it was a loss for them to not witness my recovery, week after week. I’m not being conceited. It’s an objective fact.

It was a personal loss for me when they moved on, as well, because I’d become fond of this individual. Even though they were a “healthcare provider” in a specific role and they billed me for their services, the relationship felt more like a mentoring arrangement, than a rehab situation. I was working on aspects of my life that were well beyond the scope of basic TBI recovery, anyway, and the areas of my life that I addressed — all of which were severely impacted by my concussion(s) — were hardly the kinds of things you’d list for insurance purposes.

I was fixing my marriage. I was fixing my career. I was fixing my sleeping and eating and exercise patterns. I was fixing my self-image. I was fixing my Sense-Of-Self, and all that it affected — which is/was everything. I was fixing my life. I’m not sure what they indicated on the insurance billing forms, but I’m sure most of what we worked on wouldn’t have “flown”.

Anyway, life goes on. Things change. People switch jobs and move away.  This is not news. And that’s what happened with me. It was a bit of a jolt, to start working with a new neuropsych each week — someone with a very different perspective on life, not to mention about 30 years less professional experience than my old neuropsych. This new one is very good to work with. But they’re different. And we’ve had our own bumps and hurdles along the way.

One thing I notice, however, is that this new neuropsych is a lot less discouraging around Type A activities. My old neuropsych spent an awful lot of time trying to convince me to get off my Alpha “high horse” and chill out. That did help me, because I was stressing myself out terribly over things, when I should have been allowing myself to rest and recuperate from my Daily Push. At the same time, it also held me back. Because to be perfectly honest, I do best when I’m at the top of my game. Losing access to that peak aspect of myself was a pretty devastating loss to me. And having someone tell me, “Oh, that shouldn’t matter to you as much as it does,” was frustrating, irritating, confounding. Just not helpful at all.

But this new neuropsych is a bit Type A, themself — a “gleeful Alpha”, as I call them — someone who’s happiest when they are at the top of their game, very motivated, very driven, very oriented towards Excellence In All Things. Their approach is much more high-energy. From the moment I step in their office, I have to be on my toes. I have to be sharp. I have to respond quickly. I have to push myself. I can’t sit back and chill out, like with the last one. This one is much more demanding, and while it was a pretty tough transition for me, at the start, after a year, I realize that their working style is really what I wanted from my old neuropsych — but never got, much to my former chagrin and dismay.

Now it’s a totally different game with me. And I realize, looking back on the past year, that I’ve actually jumped ahead in my functionality in some significant ways. I’ve improved at work. I’ve improved at life. I’m better at holding conversations. I’m better at socializing. I’m better at keeping myself focused and on-point. And I’m actually functioning at a level far better than any I functioned at before my accident in 2004.

That’s pretty amazing, if you think about it. Because I’ve had no less than nine different mild TBIs / concussions in the course of my life, and the cumulative effects (both in my brain function and attitude) really took a significant toll on me. That last accident in 2004, when I fell down those stairs and hit my head a bunch of times on the way down… the difference I eventually felt in myself was like night and day, compared to how I’d been before.

Now, though, I’m actually back to where I want to be. Sure, there are areas in my life where I’m not nearly as sharp as I used to be. I have a heckuva time handling programming logic, these days. But in other ways, I’ve built up skills that I never had before. I’ve learned new things about myself and developed additional competencies that I might never have bothered to develop, had I never gotten hurt and lost so many of the things I used to take for granted.

That’s pretty amazing to me. And it’s counter-intuitive, according to the standard-issue brain injury rehab “party line”. When you injure your brain, you’re not supposed to fully recover. Not really. And you’re certainly not supposed to recover to a point that’s actually more advanced than you were, prior to your accident. Oh, sure, sometimes people become geniuses after they get clunked on the head. They develop skills in math or art or some other area. But in terms of everyday functioning, those basic, often boring aspects of life that get all scrambled up after TBI? Nah, that’s not expected to be restored.

We’re supposed to settle for a “new normal” of a diminished life. Broken relationships. Broken marriages. Lower standards of living. Less career development. Less money. Less influence. Less power over our lives and self-determination.

Huh. How ’bout that…

I, for one, have no interest in living that way. And I’ve had to really work my ass off, over the past 10+ years, to get to a place where I am actually happy with the direction my life is headed. It’s not enough for me to be content with how things are. I need to be happy with where things are headed. And this new neuropsych has given me a nice break from the “chill out – just be glad you’re alive” kind of approach my old neuropsych tried to instill in me, week after week, for all those years.

They never completely succeeded in that mission, I have to say. And good thing. I’ve never been able to let go of my desire to get back to the functioning level I was at, before. And now that I’m feeling even more “back”, than I ever have, I look ahead of me and wonder about what’s next.

What is next? Well, another blog. One devoted to Peak Performance Concussion Recovery. To the high-performing, Type A, peak experience folks who get clunked on the head and watch their lives fall apart… as the medical establishment fails to help them, and people around them fail to understand the nature and extent of the impact of a “simple” blow to the head.

Concussion is not simple, no matter what people say. And brain injury (because concussion is a brain injury) is not a simple, straight-forward path you can follow, with 7-10 days of rest, followed by 8-12 weeks of rehab, whereupon you’re expected to get back to normal life, at the level you used to be at.

Concussion isn’t always straightforward, especially for people who are accustomed to operating at levels far above the median. And the expectations people have for recovery tend to be dismally low.

So, I’m doing something about that. I’ve kept this blog to chart my own recovery, my struggles and challenges and wins, along the way. It’s been a personal journey. And it hasn’t always been pretty. Now it’s time to “bump it up” a little bit, and focus on the high performance aspects of my life. Because I always had them, and I continue to have them. Even after multiple concussions over the course of my life. I’m unabashedly Type A, and I know from personal experience, how devastating it can be to lose the capability to be Type A — to be who you are, what you are, and why you are.

I also know from personal experience how to Get Back. I’ve worked my ass off, for the past 10+ years, and I’ve actually achieved what I set out to do. There were days when I gave up on the idea of ever having the kind of life I wanted. There were days when I just had to accept that things weren’t feeling or working better for me, and it felt like it was always going to be that way.

But after years and years of heartache, blood, sweat, tears, grinding it out, day after day, balancing all the lessons learned, I feel like I’ve really come out on the other end, like a surfer thrust through the windy end of the tubular curl they’ve just passed through.

I’m back to performing. I’m back to being better every day. If I can do it, so can others. And my new blog is about speaking exactly to people who, like me, are totally committed to living the best life possible after TBI / concussion.

High performers come in all different shapes and sizes. Don’t get me wrong. You can be a peak performer as a stay-at-home spouse or parent. You can be can be a peak performer as an entrepreneur, an athlete, an artist, or a corporate ladder-climber… or whatever other direction you take in your life. The point we all have in common is that we’re determined to work on ourselves and be the best we can be, no matter what… to use the lessons that life throws at us to learn and grow and make our lives into something greater than they were, just last week.

I’ll still be blogging here as a personal practice. But there’s a real need to focus on high-performance concussion recovery. And so I’ll be doing that, now and in the future.

Onward.

#braininjury Q and A for today

head with brain opening and question marks coming outLooking at my site stats, here are some questions people asked or things they searched on — and then found their way to this blog.

  • are some people wired for failure

I think some people may be. I know people who cannot seem to help making one bad choice after another, who can’t seem to avoid screwing up, time and time again. “Failure” is relative, of course. If you look at all of your life experience as a series of opportunities to learn, failure is a great way to learn more than you ever thought possible. People who succeed at everything they do, don’t get the benefit of the lessons that come from failing to achieve your goals. Then again, some people never seem to learn. They seem almost addicted to messing up, and there’s not much you can do, when someone is in that state of mind. Of course, you can call their attention to ways they could do things differently, but not everybody can hear it, understand it, or put it into action. Unless they can, their failure isn’t going to do them much good, and that’s pretty depressing to watch.

  • can hot flashes be brought on by injury

Yes, I believe so. In the case of women, I believe menopause can be triggered by a brain injury. The endocrine system, which manages our hormones, is actually pretty easily impacted by brain injury, so it can really mess up how your body handles things. This goes for men, as well. We all have hormones. We all are affected by it. And it’s my understanding that the endocrine system manages our body temperature. So, if it’s affected, yeah – you can get hot flashes after injury. The other thing is that brain injury can put you in a state of persistent fight-flight, which pumps your system full of adrenaline and other stress hormones. I don’t know about you, but when I’m all hopped up on adrenaline, I heat up. So, that’s another way you can have hot flashes after injury — you system can run hotter, in general. And getting it to tame down can take a lot of work. It’s a good use of time to work on that, of course. It’s done wonders for me, I can tell you that.

  • zone out after brain injury

I did this for quite some time, after my TBI in 2004. I would sit in front of my computer at work, just looking at the screen, not even seeing what was there. It was bizarre. And people around me got pretty uncomfortable. One day, I was an over-the-top peak performer… the next, I was a zombie sitting in front of my computer, just staring at the screen. My brain was full of gunk that needed to get cleared out, so for weeks, even months, after my accident, I just zoned out. It took quite some time to get over that, but I did. I still zone out, now and then, but that’s usually because I’m over-tired or overwhelmed.

  • concussion and remembering names

Lots of things can keep us from remembering names. After my last concussion, I couldn’t remember names, nor could I remember faces. I’d have long, involved conversations at work with people, without any clue who they were or what their names were. Then I’d walk around the office, trying to find where they sat, so I could secretly check out their name plate and figure out who they were and what they had to do with me. In order to remember something, you have to make that memory, you have to encode it in your circuits. After TBI, your brain can be so scattered, you don’t have the concentrated attention to encode memories as well as before. This can improve over time. But then you get into remembering names… which is a whole other thing. Sometimes I can’t for the life of me remember who someone is, or what their name is — just last week, I couldn’t remember one of my relatives I knew quite well as a kid. I just drew a blank. But when I asked someone else who they were, it all came rushing back. It’s tricky. It’s kind of a minefield. But it can change. It can get better.

To be truly grateful… for everything

fresh food, grains, fruits, vegetables, meat
Life has provided me a full range of experiences — food for the soul

I’ve been thinking a lot about how my life has shaped up, over the years. I spent some time with my family, this past week, seeing some of my siblings I haven’t seen in quite some time – more than a year, in fact. We exchange emails, yes. We talk on the phone. We hear about each other from other family members.

But we don’t spend a lot of time in the same space.

This past week, I got that opportunity. And it was both frustrating and really good.

The frustrating part was feeling constantly judged and pushed to the side, because I don’t have a college degree, and I haven’t read all the books my parents have read. They’re very academically oriented, and they have read a ton of books. Their house is full of books – everywhere you look, in every single room, there are books. Bookshelves. Stacks of books that have no place to store them, or that are in the midst of being read.

A lot of those books I wouldn’t read, even if I had the time and the interest. I couldn’t sustain the attention with most of them, because they come from a very narrow point of view that my family holds. It’s a combination of politics and community activism and a whole lot of religion. Their world view is very much constrained by the world they live in — a close-knit community of like-minded individuals. They don’t have a lot of voluntary interaction with people not like them. At least, not beyond a superficial level. They do spend time with people different from them, and they interact with them a fair amount. But they don’t seem to be shaped much by those interactions, other than to reinforce their own philosophies and belief system. They’re very tightly connected with others like them, and they keep the rest of the diverse world at arm’s length.

Always.

That’s something I cannot relate to. At all.

See, I’ve always been drawn to “the outside world” — seeking out people different from myself, who have interests and perspectives totally different from my own. I’ve actively sought out strangers my entire life, immersing myself in foreign cultures of social groups which have been (and still are) at sharp odds with what my family believes and their overall value system(s). I’ve immersed myself in diversity in ways that they haven’t. And it’s certainly shaped me.

Most certainly.

Anyway, as challenging as it was, being around my family, it makes me truly grateful for the life I have now. I’ve had to overcome a mountain of issues, which nobody (including my family) can see clearly, because it’s inside my head. They don’t see how my “wires” have been “re-routed” from multiple blows to the head over the course of my life. And they don’t see how hard I’ve had to work to get where I am. They have criticisms of me, galore, because of my failings. But they don’t see the invisible challenges I face, each and every day, so they can’t appreciate how hard I have to work, as well as how far I’ve come.

I can see it, though. I know all the difficulties I’ve had, and I understand what it’s taken me to get where I am today. I know how much it’s demanded of me, how much it’s required of me, how much I’ve had to sacrifice along the way, not only to keep myself moving forward, but also keeping myself safe.

It seems like every time I was getting on my feet and getting back to a baseline I could work from, I got hurt again. Or I had to deal with fallout from past mTBIs. Or things would get so crazy that I couldn’t keep it together. And so, I never moved forward.

I never finished college, because I ran out of money, and I also got into trouble with the law, thanks to my impulse issues and difficulty understanding what people were saying to me.

I also always had a household to support, so I didn’t have a lot of time left for myself, never mind the energy it would have taken to work and go to school. Yah, that wasn’t happening.

I’m in the life I lead now, doing work that I’d rather not be doing, because it’s the one sure way I can support my household. Well, it’s mostly sure — the job market is tricky, right now, and there are rolling layoffs happening at work. But I make better money at this, than at what I’d rather be doing — some sort of manual labor that gives me something to show for my work at the end of the day.

My family doesn’t see how much it bothers me, to be in my situation, because I don’t let on. I’m too proud to let it show. Plus, what’s the point in telling everyone how unhappy I am? There’s no point. I’m where I am in life as a result of unfortunate accidents, poor choices, and a fair amount of luck.

If they don’t get that, well, that’s on them. Not me.

Overall, I’ve got a good life. I really cannot complain. My choices and actions have put me here. Even if some of the dumb luck has set me back, it’s shaped me into the person I am, given me the opportunities I got, and it’s built me into someone I would respect, if I met them on the street.

So, even if it all has been really hard, it’s been well worth the effort.

And so, I’m grateful. For everything. Even the bad things that set me back. I can’t imagine where I’d be, if I hadn’t been forced to develop the skills I have now.

That wouldn’t be a good use of time. So, as ever… ON-ward…

When things don’t turn out… as expected

sunset and clouds reflected in waterI can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.

A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.

Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.

And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.

Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.

When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.

Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.

We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.

My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.

When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.

So much for vacation.

There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.

We got  home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.

Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.

So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.

The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.

But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.

And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.

But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.

And take care of myself in the process. Because I still have a lot of life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.

And so I shall.

Whatever else happens.

Vacation time

road leading into the distance, with country landscape surrounding it
The road ahead is a lot more straightforward than the road behind me was

I actually get a few days off work, starting today. Well, starting at 11:00 today — I have a meeting at 10:30 that I have to lead. But then, I’m done.

It’s been a really challenging time, lately. Morale is terrible at work, and it’s like wading through thick, sticky mud, trying to get anything done. My own morale is not great, I have to say, but I keep on with my work, regardless.  For me, the real pleasure comes from actually being able to DO the work. 10 years ago, that wasn’t the case. I was pretty much of a series of accidents waiting to happen.

  • My short-term working memory was shot.
  • I couldn’t understand what people were saying to me.
  • My ability to plan and follow through was negligible.
  • My temper was short, and the recovery time was long.
  • My spouse was afraid of me.
  • I couldn’t seem to keep a job for more than 9 months at a time – and that was pushing it, for me.

It’s all very different now, thank heavens. I’ve worked at it. I’ve rehabbed myself. I’ve pulled out all the stops to figure out how to restore myself to my former abilities — and the very positive thing is, I’ve actually exceeded my former abilities. I now have much better skills than I had before my mTBI-inducing accident in 2004. Because I could finally see what was going wrong with me, I got help from someone who could assist me, and I worked at it.

Every single day.

It was my other full-time job.

I have to constantly keep this in mind, because it’s so easy to forget. I get caught up in my daily life, I get wrapped up in my everyday experiences, and I lose sight of the fact of how far I’ve come. I get tired. Every day, I’m wiped out at the end of it all, which makes it difficult to be thankful for anything. It makes it difficult to even think or keep my temper cool. Lately, I’ve been snapping a little more in the evening than I’d like, and that’s got to stop.

I’m hoping a good vacation will help with that. Even if it’s just for a long weekend at a waterfront down three hours away. It’s something. It’s a break from the regular grind. And it’s a much-needed “reset” for both myself and my spouse.

So, as I go through my daily life, these days, surrounded by people who are none too happy to be at work and who are deeply fearful about their future, I think about how much I have to be grateful for. I think about how much better I’m doing that I was in 2007. And I think about how much farther I have to go.

Once upon a time, all my dreams had evaporated. Once upon a time, I could see no clear path forward. Once upon a time, my life was collapsing around me, and I didn’t know why.

It’s not like that, anymore.

I’ve come a long, long way.

And I never want to lose sight of that.

A less sedentary life

brain with arms and legs walking on a treadmillI can’t speak for anyone else, but I’m convinced that lack of exercise really has a negative impact on my mental health. When I am not exercising — or at least moving — on a regular basis, I get sluggish and “stopped up” and I become more susceptible to depression and feeling badly about myself and my performance in life.

Likewise, with fatigue. When I am over-tired and not well-rested, I cannot seem to deal with anything. Fatigue can come from not sleeping enough (like the other night when I had 5.5 hours of sleep – not good)… or when I’ve had a really full day… or even when things around me are going regularly and I’m rested, but I’m mentally tired from a lot of activity.

Sometimes I get tired in situations, after just half an hour of intense cognitive activity. That’s how it is with my current neuropsych. They are completely different from the last one I was seeing for all those years. This one is FAST! and they talk in rapid-fire bursts. It’s really challenging, I have to say, and at the start, it really put me off. It still makes me feel like a failure, sometimes, when they are shooting ideas at me — bap-bap-bap-bap-bap-bap-bap-bap-bap-bap-bap-bap — like they’re firing off a bunch of rounds from a semi-automatic weapon. And sometimes it really pisses me off.

But it’s good that they push me, after years of moving at a pretty slow pace. And in the year that we’ve been working together, I have to say I’m more cognitively quick than before. I  don’t always get what’s going on right when it happens — my short-term working memory issues seem to be pretty persistent — but I’m better at thinking back on what happened and piecing it together. Also, I’m better about just dropping it and moving on, if I don’t get it all. Once upon a time, I’d perserverate for hours, even days, trying to figure out what just happened. But now I’m able to just let it go.

If I don’t get it, I don’t get it. If I do, I do. Either way, I get by, and that’s what matters to me. I used to be pretty invested in getting it right, no matter what. These days, I’m happy with good enough. As long as it doesn’t get me in trouble. Sometimes it does, but I dig myself out and move on.

Now… back to exercise… Ideally, my life would have a lot more in it. I do typically exercise for 30 minutes, every morning (today I’m taking a break, because I need to recover from over-training for the past four days – recovery time is critical, and I’ve been skimping on that).

Some days, I get additional exercise at the fitness center at work. And on the weekends, I try to get out and move a bit. On Sunday, I went for a 2-hour walk down the back roads around my house, and it was great. So, I’m probably more active than most people I know. My brain works so much better, now that I’m exercising on an almost-daily basis. My thinking is clearer. I have more stamina. My mood is better. I’m just better overall. Exercise has saved my butt.

But my job involves a lot of sitting, a lot of computer work, a lot of talking on the phone. I have to type a lot of emails. I have to do a lot of number-crunching. Much of what I do requires that I sit motionless in front of a humming machine, and although I love the work, it drains me in its own unique way. Frankly, I was happier in my work when I was on a line at a factory during college, moving regularly and cranking out product that I could see and count and know was done right. I miss that kind of work. I don’t miss the noise and the grit and the stench, but I do miss doing that kind of extended physical labor.

The trick, I guess, is to figure out how I can do more work-related activities and move at the same time.

I have options. And when I think about it, some of the stuff I do, can be done while moving. I just haven’t gotten creative about it. I’ve been to rigid. Literally and figuratively. So, I’m gonna fix that.

One of the great things about my smartphone is that I can dictate. I do a lot of dictation — emails, blog posts, notes to myself — and I can certainly use it for that, instead of sitting at my danged desk, typing it all out. My hands don’t do well with a lot of typing, anyway. It’s not good for my handwriting, and it also makes them ache and stiffen up, which I hate. So, I need to have a bit of creative, pro-active thinking and actually use the tools at my disposal to improve my exercise quota. Just start walking and talking into my phone. See where that takes me. Literally.

When I’m making calls at home, I get some exercise. I pace in my living room… walking back and forth and also following the outside line of the big area rug that covers the hardwood floor, tracing large rectangles with my steps for an hour at a time. When I’m at work, not so much. I’m usually in my cube. Even when I’m in a conference room, I sit. That’s no good. If I have a conference room all to myself, I should be walking. I have a mobile phone for work, and I can be walking while I’m listening to calls. In fact, I think I’ll start doing that — especially on the calls where I’m just listening, not talking.

I need to get my butt up out of the seat and move around more, in general. One of my boss’es complaints about me is that I keep to myself too much. I don’t reach out to others. That’s true. I get caught up in my own little world, and I lose touch with everyone else. That needs to change. And I can do it. Stand up. Move. Go talk to the people I’m supposed to be talking to, anyway. Walk up and down all the stairs in the building. Learn my way around the place. It’s ridiculous. I should be moving around a lot more.

There needs to be more exercise in my life — not only because I’m getting older and it staves off the onslaught of age-related deterioration, but also because it’s good for my mental health, it keeps the blood pumping, and it can keep me from “rusting out”. ‘Cause rust never sleeps. Aging paranoia aside, when I’ve been moving a lot, I’m in a much better frame of mind. I can sleep better. I function better, overall.

It’s April. Springtime. About time I cleaned up my act.

ON-ward…

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

It’s so important to understand what happens to the brain, when it’s injured.

Broken Brain - Brilliant Mind

2. When the brain is injured, it can release a lot of chemicals that do strange things to the connections that help you think.

Everybody up and out there! GO-GO-GO!!! Everybody up and out there! GO-GO-GO!!!

Concussion / mild TBI causes the brain to go hyperactive. It’s been injured, and it starts sending out all sorts of messages to the cells without any particular order. It “knows” it’s been injured, and it starts telling itself it needs to Get Going! Go! Go! GO!

It’s like a commander in war, or a coach in a critical game shouting at the team. The cells themselves start firing on all cylinders – in any and every direction – like soldiers pinned down and desperate to fight their way to safety, firing their guns in all directions with no thought of who or what they might hit. The panicked cells start sending out impulses and communications to each other in…

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#Concussion is the event. #TBI is the result.

I still don’t understand why we confuse the two. It seems clear to me that concussion is the event. Traumatic brain injury is what happens after the brain is concussed. Still makes a lot of sense to me.

Broken Brain - Brilliant Mind

concussion-event-tbi-effect Concussion is the Event. TBI is the Effect.

Someone mentioned the other day on Twitter that we need to stop calling concussions “concussions” and start calling them what they are – traumatic brain injuries.

It totally makes sense. Our terminology has gotten really skewed, I suspect because anything relating to the brain and injuring it … well, it freaks people out, and they stop listening.

So, if you want to educate a skittish public, you have to find a word they can relate to. I’ve done it myself.

But I think it’s time to stop.

Because our terminology is flawed. And because words affect how we think about things, we really can’t think about this problem properly, until we really understand what we’re discussing.

Here’s my update to the Wikipedia infographic explaining concussion (click if you want to see the original)

Concussion_Anatomy_2016

This explains it more clearly to me — a…

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Amnesia seems to be passing

castle in ruins with clouds in sky behindI’m reading a Jason Bourne novel by Eric van Lustbader. He took over for Robert Ludlum and has been continuing the series.

I’m a huge fan of the “Bourne movies”. I love the action, as well as the scenes from Europe. It’s the closest I can get to traveling abroad, these days. Also, I really relate to the amnesia aspects of the story — at least, at the beginning. It reminds me a lot of how I’ve felt for many years, as though I’d lost myself to TBI.

The book I’m reading now features another undercover operative who’s got amnesia. He was grazed by a bullet and ended up in a freezing cold ocean, and when they fish him out, he can’t remember who he is.

I can relate.

But what I can really relate to, is the slow recovery of memories by Jason Bourne, as he goes through the motions of living his undercover life. There’s a lot he can do, that he can’t remember why. There’s a lot he’s capable of doing, that doesn’t make sense. That’s how it’s been for me for many years, with big pieces of my personality seemingly gone — maybe for good — even while I could do other things with as much skill as before.

I could find my way around a computer — I just couldn’t do the level of programming I used to.

I could interact with other people — I just couldn’t remember what they’d said to me, 5 minutes before.

I could drive and get around just fine, even learn to cook — I just couldn’t sustain the effort the way I used to.

A lot of things seemed to be lost — I have a list of them here. And a lot of them have actually come back to me. Like being able to read. Like being able to walk around outside without crippling anxiety. Like being able to go to the beach and sit on the sand. Like my sense of humor. And my sense of self. My sense of who I am and what I’m about.

My values. My goals. My morals.

It’s amazing — it’s like I had amnesia about who I was and what mattered to me. I’d completely forgotten. In some cases, I felt that loss. In other cases, I couldn’t imagine ever caring about those things, in the first place. Like my values. Like ever thinking anything was funny. The erasure, in some cases, was so complete, I had no awareness of even missing what I’d once had. And I had no desire to get it back.

But the brain is amazing. It’s resilient. It’s plastic. It heals and knits itself back together in amazing ways. I’m very fortunate, I know. Not everyone has this experience. But I have.

And for that, I am truly grateful.

Onward…

TBI Recovery – more work than you can ever imagine

I’ve now trained myself to tie my shoelaces in a way that causes the bows to lie in the direction I want them. It’s taken a while, and it doesn’t always “stick”, but it’s working.

Broken Brain - Brilliant Mind

5-Minute Read

shoestrings tied on a shoe I always tied my shoestrings in a way I didn’t like – till last month

After nearly 50 years of tying my shoes in a way that makes the laces stick out in weird ways, I’ve finally started tying them in a way that makes them neatly lie flat across my shoes.

I’ve been bothered by my “askew” shoestrings for as long as I can remember. When I was a kid and first learned to tie them, I was happy I’d just figured out how to tie them. But the way they lay — all scrunched up and crooked — really bothered me.

I told my dad once, and he said I could tie them differently, by looping the shoelaces around in the opposite direction. At the time, it was too much for me to wrap my head around. It didn’t make sense to me. Plus, I’d only…

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