A fighting chance after TBI

I’ve been giving a lot of thought to my career path, lately. As I settle into this job, that’s not quite new anymore, and is starting to feel familiar, I think about all the years I struggled — for no good reason, really.

I really believe one of the biggest reasons I’m able to succeed where I’m at today, is because I’ve gotten away from the people in my past who treated me poorly because they didn’t understand why I was the way I was. Looking back, I had so many hopes and so many dreams, but people around me — parents, teachers, friends — who saw me stumble and fall over and over (because they thought I wasn’t trying hard enough or I was just being lazy), actively discouraged me from moving forward with my life and doing something truly great with it.

What a waste that was. Having trusted people tell you, “Well, just because you want to do something doesn’t mean you’ll be any good at it,” was truly debilitating. I gave up on so many things, in part because people who claimed to care about me told me there was no way I could do them.

Stupid. If they’d realized that the reason I was failing at things was because they were too easy for me, they might have told me very different things.

Don’t get me wrong – I had plenty of reasons to struggle after each TBI. And I did have real problems with attention and extreme sensory sensitivities. But the fact of the matter is, things were made so much worse by actions, behaviors, and circumstances which lingered for years past the time when I was experiencing the worst of my symptoms. Those actions, behaviors and circumstances were created and cemented in place by the attitudes of people around me, how they treated/perceived me, and how I treated/perceived myself in return.

By any measure, TBI can be quite confusing and confounding to deal with. There are so many unknowns, so many surprises, so many setbacks, so many complications. It’s hard to know what’s going on and what to expect in the long term. The place where some of the biggest, most persistent problems arose for me, however, was not with the injury itself, but with the cascade of consequences that came from it, and the resulting anxiety and agitation that followed, long after the worst of my symptoms had either resolved or I’d come up with some compensatory techniques for dealing with them.

See, here’s the thing – TBI issues tend to resolve unevenly over time. Below is the progression of the different kinds of issues I’ve had with my TBIs.

Issues Progression Over Time - Impact of Different Issues, Relative to Each Other

They start off primarily physical and functional, then gradually took on more of an emotional and mental quality. Why? Because of all the chaos that was involved during the first 3-9 months after my injury/-ies, when my behavior became increasingly erratic and inexplicable, and the people around me became less and less tolerant of my difficulties — and so did I.

After all, none of us understood why I was behaving the way I was. And everybody — including myself — ganged up on me, trying to “train” me to behave and perform better with consequences, punishment, etc.

Now, with TBI, the whole consequences-based behavior modification approach does not work. Why is another post for another time, but bottom line is, behavior problems with TBI have their origins not in personal willpower and/or lack thereof. They have their origins in underlying neurological issues that need to be proactively managed with rest and awareness and mindfulness.

What happens when you get into the whole punishment thing, is that you’ve got a survivor who’s constantly being punished for things they didn’t intend to do, in the first place, and they become increasingly insecure and anxious about making a move, which is a huge drain on their cognitive resources. Worry and anxiety and constantly second-guessing yourself is exhausting, even without a TBI. But when a brain injury is involved, it can be cumulatively catastrophic.

In the diagram above, you can see the breakdown of issues over time. And you can also see how much energy the brain devotes to each aspect. Later on, when physical issues have resolved somewhat, the bulk of the issues are really around emotional and mental circumstances. At least, that’s how it is for me.

Which is where I come back to having a fighting chance after TBI…

If, after TBI, you take punishment and consequences out of the equation, and you manage the issues proactively with proper rest and coping strategies AND you resist the temptation to “beat up” on the TBI survivor (or yourself, if you’re the survivor), you give that person a fighting chance to get themself back together over the long term. If you remove the emotional burdens of confusion, self-doubt, insecurity, and anxiety over what might happen if you do something wrong, you free up a lot of mental energy for just living your life.

TBI has a way of slowing down processing speed, as well as cutting back on reserves of working memory. And it can manifest as forgetful and “mindless” behavior that others often interpret as “not caring” or “not trying”. When you stop haranguing a survivor (including yourself) for not getting it right… again… and you just let them work at things in the way they feel is best, giving them the support they need, amazing things can happen.

Including not burdening them with the sick, sinking feeling that there’s something wrong with them.

 

Advertisements

Change it up

How easy it is, to fall into a rut.

Day in and day out, I have pretty much the same routine, and part of me likes it. I get up, I exercise, I have my breakfast, I go to work, I come home, make supper, watch some television or read or do some work, and then I go to bed. In between, I may stretch or take a walk or do some sort of additional exercise. I’ll also check my email periodically and have a cup of coffee and a snack in the afternoon to keep me going.

Each day, it’s pretty much the same. Even on the weekends, my routine doesn’t change much. It’s great for keeping myself on track with a consistent, reliable schedule. And it makes me quite reliable, as well. I often have so much going on in my life, I don’t have a lot of leeway to stray from my path. That makes me a valuable employee, a responsible spouse, and a solid community member.

It also represents a bit of a change from how I used to live my life, when each day was a new form of improvisation, and I really didn’t have much routine at all. When I was much younger, I drifted from job to job, relationship to relationship, state to state, country to country, residence to residence, a bohemian vagabond who was more interested in the experience of living, than actually accomplishing anything.

Then I got all respectable and what-not. I got a real job. I settled down with a partner. I had responsibilities. And I changed how I did things, becoming responsible to a fault — rigid and regimented and not very flexible at all.

I went from one extreme to another. It wasn’t all bad. It made a lot possible for me that had eluded me for years — a steady income, a (somewhat) predictable career path, respect from people around me, a higher standard of living.

But I’m starting to feel antsy again. Sometimes it’s nice to change things up a little bit, and I’m beginning to feel the pull of change. I guess working in technology for the past 20 years, I’ve sort of become dependent on constant change — I expect it, I’ve acclimated to it, as things are never static for long in the technology field.

The trick now is to introduce some change into my life that doesn’t derail everything I’ve accomplished. My job history is dotted with relatively brief (12-18 months) positions that focused on one thing, then I “traded up’ to something else. I’m not sure I want to do that. I need a change. I crave a change. But I need to find somewhere to have healthy change — not destructive change.

In the past, I’ve been all too quick to just cut and run, when things got too familiar, or too comfortable, or downright easy. I need things to be challenging, and it’s always been tough to find regular challenge that can last. Especially when I’m working in environments that are geared towards standardizing everything and making things as predictable and as “safe” as possible.

I suck at safe. It’s just not me. But being a danger-seeking adventurer doesn’t go over that well in the corporate world.

I need change, and I need it on a regular basis. But I’m also realistic. Looking at my life, I don’t really want to get rid of my routine — it makes my daily life possible in ways that a hectic, constantly changing and shifting series of distractions can never do. But I do want to change some things about my routine. Like the exercise I do, first thing. For about a year, I did the same exercises — lifting free weights in the same kinds of sets, in the same sequence — and I never deviated from that.

Which is fine. If that’s all I wanted to do. But I found that it had all become quite rote and, well, boring. And it wasn’t waking me up quite the way it used to. I guess I’d gotten too acclimated, and I didn’t actually need to work at it anymore — which is the whole point of my exercises, first thing — to work out and wake myself up in the process.

So, I switched up the weights I was using and went heavier. I also changed the number of repetitions in each set.

I also moved away from doing ONLY weights, and I started doing more full-range movement, to strengthen and stretch more of me, not just isolated muscle groups. I started doing a bit of yoga, following along with some videos I found.

The overall results have been good, I’m happy to report.I feel more awake and more “with it,” thanks to this shift in how I’m starting my day. I feel more energized, actually, with these small alterations in my routine. I still have the structure of the routine to get me into my day, but I have some leeway in the midst of it all to perk things up a bit. I can have the best of both worlds – a regular routine that gets me into the day, along with some variety to keep me interested and engaged.

The same thing holds true for my work at my day job. I’ve pretty much “got it down,” after nearly a year of some pretty arduous efforts. Now I need to keep with it and build on what I’ve got, rather than running off to find some other way to keep my attention trained on what it is I’m doing. I need to watch my energy, that’s for sure, and not wear myself out. But I also need to keep active and not let myself fall into the trap of getting bored… and then getting in trouble.

It sounds odd to hear myself saying this. At my age, one would think I have more sense and more stability than to be debating this, but it’s a lifelong habit of cutting and running that I have to overcome. It’s taken me three years of regular rehab — talking with someone who understands my cognitive issues within the context of my history of TBIs — but I’m finally at the point where I realize that I don’t have to completely trash my life, in order to stay engaged.

Actually, on a deeper level there’s something important going on — I’m finally at the point where I (at long last) realize that I’ve been trashing my life to stay engaged, all along. I never realized that, till I learned about how TBI and neurology affect attention and distraction and resistance to interference, that seeking out drama and “refreshed” situations (read, new jobs, new friends, new homes, new… everything) was my way of keeping myself alive and involved in my life.

It’s not that I deliberately want to sabotage myself, or that I don’t think I deserve to have success in the long term. People have told me that story about myself for as long as I can remember. They’ve told me the following:

  • You’re a quitter.
  • You don’t have what it takes to get the job done.
  • You’re not up to the task – it’s too hard for you.
  • You’re trying to sabotage yourself/the group/the job for some deep-seated psychological reason.
  • You don’t think you deserve success.
  • You just can’t.

In fact, the exact opposite was true in many cases.

  • I wasn’t a quitter – I had a really hard time holding my attention on tasks that were easy, and I didn’t know I had that problem, so I could never address it.
  • I did have what it takes to get the job done – in fact, I had more than enough, but the easier the task got, the harder it was for me to concentrate.
  • I was up to the task – it was actually too easy for me.
  • I wasn’t trying to sabotage yourself/the group/the job for some deep-seated psychological reason – it was a neurological and physiological combination of compromised attention, susceptibility to distraction, and anxiety that set in when things started to go wrong.
  • I didn’t start out thinking I didn’t deserve success – but after so many failures and aborted attempts, I started to believe it.
  • I could — I just couldn’t see what my issues were, so I couldn’t deal with them.

As a matter of fact, many of the “decisions” I have made to either “give up” or “start fresh” were not conscious decisions at all. They were impulses driven by a serious need for alertness and attention — which was physiologically compromised by my neurology, and which I could only get back through changing up things, when they got familiar and comfortable and I was approaching mastery.

The easier things got for me, the less I paid attention, and then things started to fall apart. When things started to fall apart, I would get anxious, wondering why the hell things were starting to go south — and that anxiety and worry would further encroach on my already limited attentional capacity. I would start making choices that stressed me out, and because I thrive on a moderate dose of stress hormones, I would keep that up, gradually exhausting myself and burning myself out and endangering my working relationships.

The downward cycle would commence. And keep going. Until I was out looking for another job.

I would go looking for something else that wasn’t familiar — I’d wander off in search of more excitement that didn’t involve the situation I was fleeing. I told myself I wanted another adventure. It wasn’t that I needed to trash my life — I just couldn’t think as well as I wanted to, anymore, in those old familiar surroundings. I couldn’t function as well as I desired, and that made me very anxious and complicated everything all the more.

In a way, the easier things got for me, the harder it was for me to stay.

So, I didn’t.

Now, here I am at a job I really like, with people I really like, in an industry that’s actually stable and growing. I’ve got it really good. They like me, too. There’s absolutely no reason I should leave. So, I need to find ways to keep myself alert and engaged and attentive. Focused. Intact.

My TBIs have trashed my life often enough in the past. Time to change things up. For the better.

When getting hurt feels good

Hurt doesn't always hurt

I’m back from vacation, and I’m already starting to feel over-taxed. Time to get out in front of what I’m doing and take command of my days, my time, my energy. Most important of all,  I need to not get down on myself, thinking there’s something wrong with me, because I can’t “keep up” with everything going on. I have more stringent definitions of what “keeping up” is all about, anyway, so I need to give myself a break and be a bit easier on myself.

I’m doing great. I really am. I’ve been getting great reviews at work, and I have a really good feeling about this year. We’re already through the first quarter, and we’re moving on. Just gotta keep moving on…

One thing I noticed – again – is that I tend to push myself harder than I should. It’s partly because I have high standards, it’s partly because I have this perpetual sense that I’m falling behind, and it’s partly because I really dig the feeling of pushing myself really hard — even to the point where I’m hurting myself. I’ll stay up too late, take on too many tasks, drive myself onward-onward and feel the effects of it, day in and day out, till I crash. But I won’t stop.

I did this when I was younger, too. When I played sports, I would just push myself and push myself and push myself, playing through many injuries, including head injuries. It didn’t help that I had pre-existing concussions by the time I got to high school and started playing organized sports. I think, in fact, it contributed to my willingness/eagerness to play through injuries. Definitely, having the prior concussions contributed to the impact of the ones I sustained in high school. They made the actual injuries worse, and they made my responses to them less intelligent and more stubborn and non-compliant.

Why?

Am I innately self-destructive? No, I’m not.

Do I want to hurt myself? Did I have a deathwish, back when I was younger? No, that’s not it.

Do I disrespect myself and think poorly of myself, so I have to be punished for some terrible thing I think I”ve done? Sometimes I feel that way, but not all the time.

So, why do I do it? Why do I push myself hard (and crash hard, too) when I know it has a negative effect on me and my world.

Because as much as I intellectually know it bodes ill for the rest of my life, the simple fact is, it feels really good to push through, to play through, to keep going.

This comes back, yet again to the energy/focus/analgesic stress idea that’s been on my mind a lot, over the past years. It has to do with the calming effects of stress hormones, the way they help block out all extraneous details and simplify things for me. It has to do with the pain-deadening effects of the biochemical cascade that comes online when you’re in high-pressure, dangerous, high-stress situations. It has to do with the rush and the chill that comes from extreme living.

It has to do with pain and trouble introducing a relief of some kind, and how I instinctively seek that out.

It’s not that I want to harm myself with stress and pain. I actually want to help myself. Because the pain and fatigue and confusion of so many stimuli coming up — when I’m fatigued, I become even more sensitive, and my hearing, sense of smell and touch, and eyesight all become amplified, picking up every little thing. It’s painful and confusing, and I just want it to stop.

So, I push myself. I push myself through the work I’m doing. I push myself to get up earlier, to stay up later, to take on more tasks, and I overwhelm myself.

On purpose.

Not because I want to hurt myself, but because I want to help myself. And the stress hormones do just that. The adrenaline I get pumping, the intense focus I bring, the ability to shut everything out, just to focus on one individual task or experience at a time… it gives me a huge amount of relief. Relief from the aches and pains and sore tightness in my joints and muscles. Relief from the fog that sets in from having so many responsibilities going on that I lose track of. Relief from my insecurities about being able to get anything done at all.

Just relief.

And that’s a problem. It’s always been a problem, for as long as I can remember. As far as I’m concerned, this need — real, physical, logistical (NOT psychological) need — to plunge into stressful situations — has been at the root of many of my issues over the years. I can very easily see how it has fed my behavior issues, my distractability, my inability to complete things, my restlessness and inability to stay the course over so many years before I got started with rehab. Contrary to what many psychologists will say, I’m convinced (from my own personal experience) that it’s NOT a psychological choice to “sabotage” myself — that’s not it at all. It’s a real physical, logistical need that’s borne of neurological conditions, not psychological ones.

And to think that for so many years, I was convinced that there was something wrong with my psychology, that I was suffering from low self-esteem, that I was self-destructive, that I was somehow psychologically impaired, when all along, there were fundamental underlying neurological and biochemical reasons for my behavior and choices.

It makes me a little nuts, to think of all the years I spent feeling psychologically impaired because of misunderstood neurological conditions. But at least I’m aware of the true nature of my issues now. And that’s half the battle, right there.

If I can get some rest, step back, take another look at how I’m living my life, and make some choices that I want to make about how I want to live my life, rather than having them be made for me by reflex or reaction, drive by others’ agendas, that will be good. I’m doing that now. I’m looking at my pain levels, my sleeping issues (I’ve started lying down on the couch earlier in the evening and just going to sleep for a while when I’m tired, so I’m less exhausted when I actually go to bed – and I can actually GET to bed), my daily routine… I’m looking at it all.

Vacation was good, but it didn’t solve everything. But at least it gave me a little more rest and some distance to contemplate what it is I’m doing with myself and why/how I want to do it all.

Which is good.

Getting hurt isn’t the only thing that feels good. Sometimes getting things right feels pretty awesome, too.

I just need to make a point of focusing on that.

And find yet more replacements for the kinds of activities that give me that huge rush — the rush I don’t just crave, but can’t live without.

A million little hits

Source: photolib.noaa.go

Somebody needs to do a study on the cumulative biochemical impact of constantly finding out you screwed up. I’m serious about this – especially for new mTBI survivors. And long-term survivors, as well.

See, here’s the thing – stress impacts thinking. Cortisol mucks with your thought process. Stress hormones block out complex reasoning abilities, in favor of pure fight-flight-freeze reactions. And the long-term effects of high levels of stress hormones do have a cognitive impact.

So, after you sustain a TBI, and you’re in that initial phase of cluelessness, where you are so positive that you’re fine and everyone else is screwed up… and you keep undertaking things that seem perfectly reasonable to you, but aren’t exactly good ideas… and you keep bumping up against your new limitations (I won’t say “newfound” because it takes a while to find them)… all the while, you’re getting hit with these little “micro-blasts” of stress. The plans you make don’t work out. The relationships you depend on start to erode. Your behavior becomes not only mysteriously different, but also uncontrollable and unmanageable, and every time you turn around, something else is getting screwed up. You weren’t expecting it at all. It’s a shock — to your self and to your system.

Lots of false starts, lots of botched attempts, lots of pissed off people… and all the while, the cumulative effect of your body’s stress response to these “micro-traumas” is building up. The really messed-up thing is, that when you’re freshly injured, the experiences you have can take on vast proportions, and every little thing can seem like a monumental event. Which makes your reaction to them that much more extreme — a lot more stress hormones get released into your system that might otherwise, if you had a sense of perspective that was proportional to the actual events of your life.

But no, when you’re freshly injured, EVERYTHING can seem like a

Big Deal.

Of course, you have no reason to clear out the biochemical sludge with something like exercise or mindfulness meditation or anything like that, because either your brain is telling you that it’s much more pleasant to sit around and watch television, and/or you’re so exhausted from the stresses of daily living that making additional efforts or changes is out of the question, and/or you’ve got a lot of pain, and/or you don’t have access to the equipment or a support system or good guidance for how to start with something like that.

You’re off in your own private Idaho — no, wait, your own private hell — of watching your life fall apart for no reason that you or anyone else can discern.

After all, it was just a little bump on the head, right?

People have been puzzling for some time about the connection between TBI and PTSD, as though they are two entirely different and distinct conditions. I can tell you from personal experience that traumatic brain injury, even mild head injury, can and does result in post-traumatic stress disorder. Because even though the build-up of stress hormones is gradual and incremental, it still happens. And unless and until you figure out a way to clear out the biochemical sludge of one alarming stress response (no matter how small) after another, you’re going to have a heck of a time clearing your mind to the degree you need to clear it.

Being a mild traumatic brain injury survivor (I’m actually thriving, not just surviving), and having experienced what my neuropsych has called a “phenomenal” recovery, I can personally attest to the importance of exercise and good nutrition in helping the brain recover. I can’t even begin to tell you how “gunked up” I was, when I first showed up for my neuropsych testing. I was a wreck. Just a walking series of screw-ups waiting to happen. I bounced from job to job, just dropped out of a couple, made really bad choices about my money and my career and my home and my relationship, and to those who were watching, I was indeed teetering on the brink.

Now, I’ve been extraordinarily blessed to have connected with a neuropsych who firmly believes (after 25 years of working in TBI rehabilitation and 30 years in neuroscience) that recovery is possible, even probable, and that there is hope of some kind for even the most intractable cases. But even they weren’t expecting me to do as well as I have.

Especially in the last year, I’ve made some pretty great progress, and it coincides with my starting to exercise each morning. I don’t do a lot, most days — just get my heart rate up for 15-20 minutes, then stretch, then do some light strengthening exercises. The main thing is that I get my heart and respiration rates up, and that I jump-start my system. This is something that anyone can do — and you don’t need special equipment to do it. We all have bodies, and most of us are able to exercise them enough to get our heart rate and breathing up.

This is key. I can’t say it enough — to help clear out the buildup of stress hormones in the body which can impair thinking and make the aftermath of an mTBI even more challenging than it is already, exercise helps like nothing else.

What’s more, it oxygenates the brain and it stimulates the parts of the brain that learn and heal. How amazing is that? Very, very cool. Even after a long period of difficulty, as the folks at the Concussion  Clinic at the University at Buffalo have found, regular exercise can clear away “stuck” difficulties of post-concussive syndrome. One of their study participants even got back to a way of being that was better than he was before his six concussions or so — according to his mother.

Why does this work? How does it work? There are lots of possible explanations, but at the core — for me — it’s about giving your body the ability to deal with the constant onslaught of surprise and alarm and reaction to situations which emerge (often blindsiding you) in situations where you thought you were fine. For me, it’s very much about giving your body the ability to return to balance, to homeostasis, so it can just get on with living life. It’s about clearing out the cortisol, the adrenaline, the noradrenaline, and the handful of other biochemical substances that our brains normally secrete in order to help us deal with emergencies. Humans don’t have the same ability as animals, to clear this stuff out. Rabbits and antelope will shiver violently and shake and run around to clear out their biochemical “load”, but humans just end up hanging onto it, for better or for worse.

But, you may say, having things turn out differently than you expected isn’t such a big deal. Why would that be so stressful?

Trust me, when you’ve sunk a whole lot of time and effort into something and your self-image and survival (i.e., job) depend on things going the way you planned… and then things turn out to be screwed up in a way you hadn’t anticipated, and everyone is all worked up and pissed off and gunning for you ’cause you wrecked things (again), it does produce an extreme reaction. Especially in someone who has to contend with the extreme emotions and volatility, uncontrollable anger, rage, inexplicable confusion, and all that crazy anxiety and agitation that go hand-in-hand with traumatic brain injury. Even folks with “mild” injuries have these kinds of issues, and it can exacerbate and compound matters to no end.

Ultimately, if it builds up enough (and let’s not forget the embarrassment and shame and confusion that can be socially isolating), it can all become utterly debilitating. Disabling. And all because our  bodies haven’t had a chance to recover adequately from all these little incremental alarms, shocks, and other reasons to get pumped full of adrenaline and cortisol.

So, it’s important to not gloss over the effect of those million little hits. Inside our bodies and inside our minds, they do add up. And as our bodies accumulate the sludge of fight-flight-freeze, our minds are affected. Fortunately, there is a way to deal with it — exercise. Vigorous to a degree that gets your heart and respiration rate up.

Don’t have access to a gym? So what? Take the stairs instead of the elevator. Don’t have a set of weights? Big deal. Carry around some heavy stuff in your home. Don’t have an exercise bike? Do some knee bends, jumping jacks, and run in place. Swing your arms around. Stretch and move. Just get going — enough to get your heart rate up and create a noticeable difference in your body.

Now, I’m not saying it can fix things overnight. It’s taken me a year of consistent effort and commitment to get to this point, and when I started out, it was about the last thing I wanted to “have” to do each morning. But I wasn’t making the kind of headway I wanted to in my recovery, and the doctors were starting to talk about putting me on meds for my attention and mood issues. Given the choice between pharmacopia and 15 minutes of exercise each morning, I went with the latter. I’ve done the drug thing before, and it just made my life that much worse. I can’t go back there again. I just can’t.

So, I started getting my butt out of bed, and am I ever glad I did. I’ve read about biochemical stresses and PTSD in the past, and I’ve read about how animals can clear out the “soup” but humans can’t. But until I started exercising and got clearer as a result, the full impact of what I’d read didn’t sink in.

Now it’s sunk in, and it makes total sense. TBI can very much lead to PTSD — by right of the constant barrage of surprise and alarm and shock (not to mention our tendency to over-react to the unexpected or unfortunate events in our lives) which bombards us with stress hormones that don’t automatically clear themselves out of our sensitive systems. Given that TBI survivors’ systems tend to be even more sensitive after our injuries, it’s all the more reason to get up and get moving.

If you’re still sitting down while reading this, please get up off your butt and move. Your brain — and your life — will thank you for it.