I just checked my stats from the past 30 days, and it looks like word has gotten out about this blog. Or people have been finding their way here. The breakdowns of countries are below – this is just the past 30 days, but the range of countries is pretty extensive.
I’ve been on a bit of an emotional “tear”, lately. I hate when this happens, but now that spring is (finally) here and people are coming out of hibernation, I’m interacting with more people these days, than I have in a long time.
I’m also in contact with my parents more, which is a fairly complex undertaking, at times.
And it brings up all kinds of “old stuff”, which is a pain in the neck. Things like my parents’ disappointment in how I turned out, compared to my other siblings. I went my own way in the world — partly because I wanted to, partly because I repeatedly failed at doing things the way they were expected — and they’ve never quite made peace with it.
Case in point: I never graduated from college. I went for 4 years, and I did pretty well while I was there. But my exciting life (including trouble with the law and a series of mild TBIs from car accidents) got the better of me, and I couldn’t organize myself well enough to finish. My parents never quite forgave me for that, even though I’ve been extremely successful in my chosen profession, I’ve done a fantastic job of providing for my household, and I’m a valued member of my community.
Just the other week, after all these years, my father was giving me a hard time for not finishing school. As though that’s the only measure of my worth or ability to perform.
I know he’s not in the minority in that. The whole world seems to think that a college degree confers brilliance upon its owner — or at least basic competency. And if you don’t have that degree, you’re considered less-than. I get that all the time, when I’m job-hunting. And I’m wondering how long till the rope runs out on me, and I can’t actually GET a job, because I have no degree. It could happen. I just hope it doesn’t happen anytime soon. I have plenty more life to live, before I have to give it all up because I can’t get a job that pays more than minimum wage.
And that really cuts into my self-esteem. Being able to provide for my household is one of the biggest aspects of my self-image, and when I was struggling with holding down a job, it was brutal. It’s not optional for me, and I’ll go to any lengths, do just about any job, in order to keep our standard of living where I believe it should be. So, I’ve done what’s necessary. I’ve acquired skills, worked my ass off, really plowed through every conceivable obstacle to get where I am, today.
And I’ve done all this with a history of multiple mild TBIs that seemed to cut me down at every turn, when I was growing up, and then again when I was an adult and at critical turning points in my life.
Funny, how that works. Not ha-ha funny, but ironic. Weirdly ironic. Just when I’m about to turn a corner and really kick it into high gear… I get into a car accident, I fall down some stairs, I hit my head. Something.
Of course, looking back, it makes sense to me, now. Those times when I was about to turn a corner, I was so focused on turning that corner, that I failed to notice the hazards in my life. I can get extremely focused on My Main Goal, to the point where I block everything else out, and I go on auto-pilot. So, I can’t blame the world for my misfortunes. I’ve played a role in many of them.
But still, I do get a little tired of being lectured about not living up to my potential. I know I haven’t done that as well as I want, and it really burns. It aches. It tears me up inside. And there’s nothing I can do about the past.
But I have my present — which is really just a pale shadow of what I wished it would become, once upon a time. If I hadn’t gotten hurt regularly, when I was younger — a fresh concussion every other year or so, sometimes two of them within a few months of each other — I might have had more of a fighting chance. But what’s done is done.
And now I need to focus on the positives and keep myself moving forward, using everything I’ve lost, every hardship I’ve experienced, for the good.
Because, to be honest, this motivates me. All the missed opportunities, the screw-ups, the failures… they motivate me. Because I don’t want to do them again. I need to get back on the horse and try again. I need to keep going, keep moving forward in my life, keep looking for ways to contribute. I may not be in the top-flight leadership position I always expected to be in, oneday, but I can do my part in the place where I am right here, right now.
And there are advantages that I have, thanks to my concussion history. I have the advantage of knowing how capable I am at recovering. I have the advantage of knowing how concussion works, how it affects you, and what you can do to overcome it. I have the advantage of on-the-ground, hands-on life experience with TBI recovery, which is a far sight more than a lot of rehab professionals have. I have an insider’s view, and I’m able to articulate that to others who may need to hear about these things.
So, my experience is good for something.
And I have to wonder if maybe my distance from the standard-issue path to social acceptability and respect may actually work in my favor. Because I haven’t been in the mainstream as a fully-vested participant (I do a great impression of somebody with skin in that game, but I honestly don’t have the energy to play a leading role), my thought patterns haven’t been overtaken by the status quo. I’m always the outsider, in so many things, and that gives me a creative edge, as well as a motivational edge.
Because popularity and success and public acclaim haven’t been lavished on me, I haven’t been corrupted by those influences. And that’s a plus. Especially when it comes to talking about things as eclectic and as misunderstood as mild TBI. I have no investment in sticking with a party line, and I have no use for the usual platitudes and prejudices that seem to run the world.
All in all, I think I have plenty to be proud of. And when I look at my past and present through the lens of appreciating what all I’ve had to overcome (which my parents and most people will never begin to understand), it really eases the burn of all the disapproval, all the lectures, all the marginalization.
I have my life. And I’ve got a lot to be thankful for. I can never lose sight of that.
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.
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.
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.
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…
I 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.
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.
I 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.
I’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.
I wrote this Thursday morning… then I got busy. I’ll post it now.
It’s cold today. It’s a beautiful clear day, and I am off to an early start. I have an appointment with a counselor, who is helping me sort through my day today logistics. I really like this counselor, because they are not focusing on a lot of emotional stuff, rather on what I need to do from day to day to live my life well.
This works for me. TBI can make a person overly emotional in ways that do not make any logical sense. Every little thing can throw you off, for no apparent reason, so taking the usual emotional approaches to therapy is not as effective as a lot of psychotherapists think. In fact, if anything, it can actually be counter-productive in the worst ways ever. Trying to address neurologically-based emotional issues with psychotherapeutic techniques can actually make things harder to understand, emotionally speaking… which is exactly what happened to me, about 10 years ago when I was first actively recovering from my TBI issues.
Not many of my psychotherapists actually knew this, which strikes me as odd, even dangerous. I know it was dangerous for me. And I wish that my neuropsychologist had been more detailed and vocal in their reservations about me seeing a psychotherapist while I was in recovery for traumatic brain injury.
Anyway, that’s neither here nor there, and my life is back on track. And that’s what I want to talk about today.
I’d rather talk about How I got my life back on track.
I have talked a good deal in the past about Sense of Self, and how that impacts your life after brain injury. To me, this is by far the most critical issue in terms of recovering after concussion or brain injury. In fact, I would go so far as to say that it is the main issue in recovery from concussion or TBI. But at the same time, it is one of the least understood and and most underestimated.
Losing your sense of self sets the stage for all manner of behaviors and experiences that impede your recovery. The neuroscience is there, and it states very clearly that added stress impedes learning. And if TBI recovery is anything, it is learning to live again along different lines. If getting your brain back in working order isn’t about learning, I don’t know what it is about.
When the frontal lobe is injured, which is so very common in traumatic brain injury, it causes us to manage our emotions less well, and that can certainly interact with the limbic system. Other individuals, like Ken Collins, stress the importance of managing the limbic system, the part of the brain that is hyper emotional. I totally concur with his assessment. He should know. He’s a long-term survivor, himself.
When we get worked up over things, all of our energy is going into our emotional reactions, rather than figuring out what is really going on, and dealing with what is right in front of us. We can get so caught up in our interpretations of the fleeting meanings of different things, taking things personally, getting insulted and outraged over every little thing, and also being frustrated and embarrassed, that we have no energy left for regular functioning.
And that is a huge problem. Because the brain uses a lot of energy, and that is only for every day regular things, let alone extraordinary and novel situations that demand more of our resources to process.
So cutting down on environmental stress is very important, and that environmental stress also includes our internal reactions to it. Our internal reactions – at least mine – can make everything worse, and if you don’t have a clear sense of yourself,you were not secure in who you are, and you don’t trust yourself… well, that’s a problem.
Not being able to trust yourself, not knowing what to expect, and not having a clear view of where you fit in the world, is incredibly stressful. Self-familiarity, self-trust is so central and fundamental to us, that we don’t even know it’s there, half the time. We just take it for granted, and when it is removed, we can fall into an abyss of severe self doubt and crisis.
To me, the changes that take place in our brain, the abilities that we once had that are different now or maybe completely gone, the different reactions to our situations, and the deficits that we develop are far less less of an issue than the experiences we have as a result. The experience is what turns our situation into a tragedy, a comedy, or just another aspect of life that we need to adjust to.
Think about how much you have changed in the course of your life, even without a brain injury. You are not the same person that you were when you were five years old , 10 years old, 15, 20, or beyond. We change all the time. We change in reaction to the world around us. Our physical and mental abilities shift over time, and it is not catastrophic, but it’s part of a normal and regular development cycle.
But when brain injury shows up, that changes the patterns that we expect in our lives, and it makes it hard for us to know how to live.
Anyone who is alive is going to know what it’s like to be taken by surprise by unforeseen circumstances. Brain injury is no different, although it is on a much larger and more pervasive scale and of a higher order, than – say – a change in the weather, or change and scheduled activities at work or in your social life. Brain injury changes are deeply altering, even if they come from a supposedly “mild” injury. That is an inescapable fact of the injury.
The thing is, this is the sort of change that we can – and should – learn how to navigate. And we do that through adjusting and adapting and getting to know who we are after the injury. People talk about there being a “new normal” after a brain injury and that can be very true. I know it’s been true for me. The thing is, the “new” normal does not have to be dramatically less successful or lower quality than the “old”. If we learn how to adapt, and we learn how to learn our way back to recognizing ourselves, this can all simply be another aspect of her of our lifetime of developments, just as adolescence and early adulthood, and even aging are parts of the normal process.
So, how do you do that? How do you learn your way back yourself? For me, the secret has been all about routine. Predictability. Establishing set ways of living my life on a daily basis, so that I can and do learn to recognize my reactions and my experiences experiences, familiarizing myself with this new person I have become. There are certain things I cannot do the way I used to. I cannot program with the same complexity that I used to. I cannot simply jump in and learn new computer programming languages like I used to. I cannot push myself for hours upon hours upon hours of sitting in front of a computer, without paying the price four days after. I have to more actively manage my temper, I have to more actively manage my energy levels, and I cannot under any circumstances deviate from my eating plan for extended periods of time. Maybe a couple of days of eating more junk… but I cannot go longer than a few days off my diet without really feeling it.
I also cannot spend as many hours doing One Single Thing as I used to. I have to pace myself. But that’s not necessarily a bad thing. In fact, if anything I would say that it’s been long overdue. So, not all of the changes are bad, and not all of the adaptations are worse than my life originally was. It’s just change to me now, just like changing my job, or moving to another location.
In some ways, adapting to a brain injury can be easier than adapting to a new job, a new place of residence, or other life changes. I think that brain injury offers that those other changes don’t, is steadiness. It offers a new kind of predictability, if I watch carefully and study my situations. And it gives me the opportunity to really shape the outcomes with my own choices and my own behaviors.
In terms of other kinds of changes, I have to adapt to other outside shifts, whereas with brain injury it’s very much an internal process. And while the motivations and choices of other people may sometimes mystify me, inside my own head I have plenty of opportunity to get to know myself, learn about how my system works now, and adjust. I don’t always get that same opportunity with other people and outside situations, but I do have that with myself.
In the end, brain injury recovery is not a simple, straightforward thing. It’s complicated, and it’s different for each person. At the same time, it does have certain benefits and advantages that I probably never would have realized, had I not gotten hurt. I’ve had a number of concussions in the course of my life, and each one taught me something different. I’m not saying I’m glad they all happened, but if it has to happen, I might as well get something out of it. And I have.
Ultimately, we all need to make our own choices, and we all need to find out that’s our own paths. It’s not necessarily for me to tell you how to live your life, but I can tell you what works for me. And I can tell you what I have learned to be essentially true about the nature and experience of brain injury and recovery.
The main thing I’ve learned is: brain injury recovery is not 100% impossible, the way people have said for many years. It also isn’t what people seem to think it is. We might not regain every single faculty and ability that our brains used to have, but we can still develop other skills and other abilities that will help us to recover our quality-of-life, and bring genuine happiness — even where we were miserable before. It’s not about making the brain do exactly what it used to do. It’s about recovering your dignity, recovering your independence of thought, and regaining your self-respect. There’s more to that than brain function, and there are more ways to achieve it then by making your brain do exactly what it used to do in exactly the ways it once functioned.
I can’t say this often enough or stress it strongly enough – brain injury recovery is possible. I am doing it. I have done it. It is an ongoing process, and I will probably never stop doing it. But I have made more progress in the last 10 years than my old neuropsychologist had ever seen in 40 years of brain injury rehab work. I’m living proof – walking, talking, working proof – that it is possible to put your life back together and regain your sense of self, even if everything you once had feels like it has been taken away.
Anyone who says differently – that brain injury recovery is impossible – has not been looking in the right places, or hasn’t been talking to the right people.
But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.
So, I help out.
I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.
And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.
But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.
I slow things down, too. The fatigue is just crushing, at times, and when I push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.
On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.
I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.
We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.
Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.
On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.
And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.
But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.
And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.
It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.
It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.
This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.
It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S. –Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.
Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.
I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.
As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.
Sometimes the wheels come off. And you just have to figure out how to deal.