What we lose after TBI… and what we can get back

woman standing with a leaf in front of her faceI’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.

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My last decent vacation in a good long time…

open book with a landscape scene in the pages
The way life goes, you never know how things will shape up. I’ve had so many hopes and dreams over the years, and so many times, I’ve been on the verge of really breaking through… then something happened. And that “something” was often a TBI.

I was just getting my act together in elementary school, finding my footing with my peers and getting involved in a special program for “gifted” kids and discovering what worked for me, when I got hit on the head and things changed. I became combative. Difficult. A behavior problem. So much for the gifted program. They showed me to the door on that one.

My family relocated, and I was finally figuring out how to interact with the people around me (who all talked with thick accents I could barely understand). Then I fell out of a tree and wrenched my neck. And I kept hitting my head while playing sports. Football. Soccer. Just playing outside. Hitting my head was routine. I can remember a number of really significant blows to my skull that disrupted my consciousness, but they happened against a backdrop of regular clunks on the head. It seemed like every time I got on my feet and started feeling like I had a grip on my life, I’d get hurt (again), and I’d be back at square one.

I eventually got out of my parents’ house and got on with my life. When I drank a lot, I fell down — a lot. I may have (probably) hit my head a bunch of times, but I don’t remember much from the 4-5 years after I left my parents’ home.  Those years that could have been some of my best (and in some ways, they were). They could have been years of exploration and learning and experience like no other, but instead they were mired in the muck of hangovers and all the confusion that comes from not knowing what happened the night before. A few scrapes with the law… being ostracized by my peers… some violent confrontations… making money by borderline means, just to get by… it was definitely an experience — that’s for sure. But it took me years to recover from the damage I did to myself.

After I was in the working world, driving to work each day, I got in a bunch of car accidents. They weren’t huge deals, mostly just fender-benders, but whiplash and getting clunked on the head didn’t help matters any. During years when most of my peers were getting on their feet, finding their way in the world, I was scrambling. Trying to catch up, after being set back. I got a job, then got hit by a speeding door-to-door salesman. I left that job without saying why. Just left one day and never went back. I relocated to a really great city, but just before moving, I got rear-ended and spent the next several months in a manic haze.

Years later, I had a pretty decent job with a lot of responsibility, then got tangled up in a 7-car pileup, and everything fell to pieces there, too. That worked out okay in the end, because I found a much better job and a completely different career track, but it did a number on my self-confidence, and it caused me to pass up a golden opportunity that my new manager laid at my feet (and begged me to take). I can only imagine how much more stable my life would be now, had I actually taken them up on it.

The last and most debilitating TBI was when I fell down a flight of stairs at the end of 2004. I was just 18 months away from having some investments mature, and if I’d been able to hang in there and keep up with my life, I could have repaired and paid off my house, gotten rid of my debt, and really solved a lot of logistical problems that are the kinds of things that only money will solve. None of that got solved. It all fell apart. And it’s taken me 12+ years go piece it all back together to just a semblance of how things once were.

So, what does this have to do with my current vacation (which is now drawing to a close)?

In the course of my life, I’ve never known just when everything would fall to sh*t. It’s partly me being oblivious, partly me not having a reliable crystal ball that lets me peer into the future. So, all those times when I just assumed I’d have time to do this, that, or the other thing… all those times when I thought I was set… all those times when I didn’t pay attention to what was Right In Front Of Me… in so many cases, they were the last hurrah for that part of my life. The last shred of self-confidence. The last vestiges of feeling competent. The last months of feeling like I could actually plan my future with certainty. The last weeks of being able to take certain things (like how my brain worked or how I’d react to experiences) for granted.

I didn’t savor those things when they happened, because I was too damn’ optimistic. Too oblivious to just how sh*tty life could get for me. Not experienced enough to realize that things could get That Much Harder for me in a moment’s time. I took them for granted. I didn’t wring every last bit of goodness out of them, while the goodness lasted. And now I just look back on a lot of wasted opportunities and chances I totally missed enjoying… all because I thought there would be another time that would be somehow better.

I don’t believe that anymore.

Especially not this morning.

From here on out, my vacations will probably be a lot more work than relaxation, a lot more frustrating than renewing, and a lot less worth it to me. But they’ll continue. Life goes on. Sh*t gets complicated. So it goes.

For today, I’m just going to enjoy myself. Because this might just be as good as it ever gets.

I have the next week OFF

beach with ocean and "relax" drawn in the sand
Soon…

I’m leaving for a week’s vacation today. I have a handful of errands to run before we can get on the road, and then we are heading out to a waterfront town that’s full of art galleries and novelties shops and all sorts of great restaurants. We have a few restaurants that we really like, but mostly we avoid the crowds and excitement, buy Mexican or Chinese takeout and head for the beach for our own waterfront dining. It’s the best way — sitting in the car right at the edge of the water, having a nice filling meal that doesn’t cost a million bucks.

It’s going to be nice to get away. It’ll give me time to think, time to relax. I realize that I’ve been stuck in limbo with my life for some time. There’s been all kinds of drama in my immediate and extended family for the past 15 years — actually, longer than that. More like 40 years. And it’s really dragged me down, watching everyone go through their problems — me included.

But now, here I am, at a place in my life where I just don’t feel like I have the time to fritter away on feeling terrible about things that I can just take care of. I’ve learned a whole lot about how to deal with my TBI issues, and I’ve made an amazing recovery. So why not enjoy it?

Why not, indeed? I feel like I’m at a point in my life where I’ve learned more than enough hard lessons, I’ve been through my make-or-break circumstances, and I’ve made it through. I’ve paid my dues. Now it’s time to just enjoy my membership.

It’s funny… I don’t tend to think of myself as that old. I’m really not. But I have been knockin’ around on this planet for over half a century, and I’m kind of over the whole newbie experience. I’m not a newbie. I’ve been around the block plenty of times. And it’s about time I just settled into living my life and enjoying it, instead of constantly pushing myself to “take it to the next level”.

Please. What next level? No matter how hard I work, no matter how hard I push, there will always be another level ahead of me. So, why not just settle in and get the most out of the levels I reach? I haven’t done nearly enough of that over the years. And while it does keep me sharp and invested in my life, it’s also depleting and drags me down.

Eh, whatever. I’m going on vacation. I’ll probably blog a bit while I’m there. Just relax into it, do some writing, have a good time, while I’m at it.

And now… it’s time for more errands, as I prep for my 7-day escape.

Onward.!

When things don’t turn out… as expected

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

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

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

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

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

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

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

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

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

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

So much for vacation.

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

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

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

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

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

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

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

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

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

And so I shall.

Whatever else happens.

Vacation time

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

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

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

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

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

Every single day.

It was my other full-time job.

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

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

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

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

It’s not like that, anymore.

I’ve come a long, long way.

And I never want to lose sight of that.

Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

After TBI or concussion – slower brain, craving stress

brain-firingOne of the amazing things about the brain is that it has an uncanny ability to get what it needs in the short term, but which actually hurt you in the long-term.

After injury, it can push you to do things that will feed its immediate need, but the ultimate result is just not good.

Take stress, for example. And danger. And risk-taking activities. All those things look like either bad habits or a taste for self-destruction. But actually, it can be the brain seeking out the pump of energy it needs to function.

After TBI or concussion, the brain’s “tonic arousal” (its general level of wakefulness) can be negatively impacted. The brain is literally more “sleepy” and doesn’t respond as quickly as it once did. Many concussed folks complain of feeling slower than before their injury, and while there may be a number of different reasons for that, tonic arousal can be a big component.

So, what does our brain do? It seeks out opportunities to come alive — to feel like itself again. WOO HOO! And for a little while, when we’re stressed out over our procrastinations, or our altercations with others, or our other poor decisions made in the heat of the moment, we actually do feel alive. We feel like ourselves.

The only problem is, stress and drama actually keep us from learning. The parts of our brain that need energy and information can be literally shut off, when we’re under extreme duress. And as a result, we can end up repeating the same stupid mistakes over and over again.

Because A) We haven’t had the chance to learn from our last mistakes, and

B) There’s a part of us that actually thrives on those stressful situations.

So, it’s a vicious cycle.

And it applies not only to folks with TBI and concussion, but also those with ADD/ADHD, PTSD, or other brain-related issues that slow them down. When you need to go faster, your brain will do what it needs to get its requirements met. The only problem is, over the long term, this can be… just a little disastrous.

You can read more about this here at:

A Perilous Relief

Just something to keep in mind…

Overcoming overstimulation

Lots going on...

I’ve got a big trip coming up next weekend — I’m taking nearly a week to go see family in several states… kind of a follow-up trip to make up for not having been there for the holidays (I was sick and couldn’t travel). There will be lots of driving, lots of activity, lots of interacting with relatives I haven’t seen in many years. There will be a family reunion with relatives, some of whom care about me, others of whom couldn’t care less about me. There will be time with siblings as well as aunts and uncles and cousins. All together in one big melting pot for the weekend.

This is coming on top of some very busy times at work. I’m a bit apprehensive, because I’ve been tired and I’ve had trouble sleeping, and I am concerned that it might affect my ability to deal with my family. I also worry that it will affect my ability to deal with my spouse, who is not a big fan of most of my family. We come from very different backgrounds, and my spouse is not always the most open-minded individual when it comes to differences.

I know I shouldn’t stress over this, but I am a little bit. I have to get a bunch of things done for work before I go — it’s really BAD timing, but there it is. My workload is just crazy, these days, and it will be until mid-September. Then it will probably pick up again through the end of the year. It’s hard to believe July is almost over. August is so packed, it might as well not even exist. Just busy, busy, busy all around.

But it’s a good thing. It beats the alternative. I’ve become a key contributor on some important initiatives, so that keeps me going and it gives me a sense of belonging to something bigger than myself. And I have to keep that in mind. It’s another way of looking at it — it’s a good thing, that going away for a few days is a problem. Because if it weren’t I’d be in trouble.

Likewise, if I think about the upcoming trip with my relatives, one of the reasons it promises to be so full, is that so many people want to see me. They want to talk to me, to find out how I’m doing, to tell me about their lives. They want to share a lot with me, and they don’t realize how overwhelming it can be for me. Over-stimulation has resulted in me going temporarily deaf and blind — I was with extended family members who were very high-strung, and there was so much going on, my system just shut down, and for a short time (maybe 10-15 seconds), I couldn’t see or hear anything. Everything just went silent and black. I came back (of course) and felt dazed and confused. I suspected it might have been some sort of seizure, but then I got checked out, and everything seemed to be fine, actually. So, it was probably just the overwhelm.

Thinking back on that day, which was about six months before I figured out the TBI connections to the difficulties I’ve had in my life, I can think of a number of things that made it more difficult, overstimulating and overwhelming:

  1. I was extremely anxious about a lot of things — if I was wearing the right sorts of clothing (people around me were much better dressed than I, and I felt self-conscious in my jeans and t-shirt).
  2. I was pretty brittle and inflexible in my expectations for the day — I wasn’t going with the flow, and when the group kept changing plans, I got increasingly uptight.
  3. I wasn’t eating properly — I wasn’t eating the same sorts of foods I normally did.
  4. I wasn’t resting enough — I had been pushing myself to go-go-go, the whole time, and I was very fatigued.
  5. I wasn’t exercising enough — I wasn’t exercising at all, actually. I hadn’t been taking the walks I needed, and I hadn’t been working out regularly the way I have been over the past couple of years.
  6. I wasn’t wearing my sunglasses — Big problem on that very sunny day. The brightness only exacerbated everything else, adding to my anxiety and stress.
  7. I wasn’t in command of my thoughts and my reactions — I was being pushed and pulled in a million different directions, and I wasn’t driving the car of my own mind. I was letting everyone else decide for me how to think, how to talk, how to behave. I was trying to fit in and do the right thing so I wouldn’t be as conspicuous (and embarrassing) to my extended family/in-laws. The result was that I stood out even more, I was less able to participate, and I lost it (literally) for a short while that day.

Looking back, I can see how I’ve really come a long way in the past 4 years. I’m nowhere near where I used to be, and I have to remember this as I prepare for this next trip. My anxiety levels have decreased dramatically since I started exercising on a daily basis. And my whole world view has changed as a result. My neuropsych has been a huge help, keeping me honest and realistic — in a good way. They don’t let me get away with the old “stories” about how debilitated I am by my TBIs. They don’t let me easily jump to conclusions about being incapable and incompetent, just because I happen to be human. And they don’t let me make excuses about poor choices I’ve made and things I’ve done. They don’t beat me up over it, but they also don’t let me write myself off with some easy excuse about being impaired.

And that’s quite a feat to accomplish. Because I have a lifetime of experience of reaching the “logical” conclusion that there is something wrong with me, and I am less capable than I actually am. I’ve had plenty of people telling me there was something wrong with me. I’ve had plenty of people “protecting” me from myself. I’ve had plenty of people ditching me or taking me off tasks when I didn’t perform as expected.

It was all a crock, but when you hear it often enough and everyone seems to agree, it starts to sound like the truth.

But it’s not. It’s the farthest thing from the truth.

The real truth is that I have the tools and the experience and the proper mindset to approach this coming weekend in a stable, productive frame of mind. I’ve managed equally — if not more — challenging situations quite well, and I’ve come away a better person as a result.

I know from experience that I don’t have to bury myself in work in advance, trying to keep my mind off things. I don’t have to run away from it, drive myself with all sorts of stress that takes my attention off my anxiety. I can rest and relax and also get good exercise in advance. Eat well and take care of myself, and remember that I’m going to meet and greet people who actually love and care for me, even if they don’t always agree with how I live my life and vote.

That might actually be the hardest thing to handle — that anyone could actually love and care for me. That all my injuries and my issues and my supposed shortcomings might not matter nearly as much as I think they do. It could just be that I have a great time when I go on this trip. It could just be that the only over-stimulation is actually in my mind. And that if I can tame that, all the rest will come naturally to me.

It could be…

concussion now i’m stupid

Someone visited this blog yesterday with the search “concussion now i’m stupid” and it seems like it’s in the air.

I had a great day Saturday — I had a very social day, and I was out and about in town, which rarely happens with me. I either don’t have the time, or I don’t make the time, or I find a hundred other things to do that are more interesting than interacting with other people in a city.

But Saturday, I took a bunch of chances, and I had a ton of interactions that were really positive and encouraging.

Sunday, on the other hand, was a huge challenge. I wasn’t able to rest as much as I had wanted/planned, and I was really feeling the effects of all the exertion on Saturday. Even if the exertion was good and positive, it was still exertion, and I didn’t remember to rest.

One of my big problems is, when I get over-tired, I often forget to self-monitor. That happened to my yesterday. So, I ran into trouble.

With a Capital T. Had a huge meltdown yesterday. As in — rage and tears and being stuck in a loop of anger and shame and frustration and resentment. I hate when that happens. I could feel it coming on, and I thought I could stop it, but I couldn’t. It was like a repeat tsunami of unwanted overwrought emotion. Waters pulling out, then washing in and wrecking everything in its path. Emotion pulling out, then rushing back in and leveling everything in its way.  It came and went for about three hours, and it totally screwed me up — and my spouse. Not pretty at all. And I’m still “hungover” from it this morning.

Ugh.

Looking back on things with a less emotional eye, one of the things that complicated my situation yesterday was that insidious little voice in the back of my head that managed to find everything I’d done “wrong” on Saturday, amplified it about a thousand times, and then commenced to tell me You’re So Brain-Damaged and Stupid. Who would ever love or care about you? You’re such an idiot – you had a concussion — no, wait, you had a bunch of concussions – and now you’re stupid. You’re so stupid you don’t even know how stupid you are.

Stupid.

Well, you get the idea. And sure enough, as always happens when that voice gets going, before long, I was at war with the world, at war with myself, at war with my spouse, at war with my job, at war with everything and everyone who came anywhere near me.

concussion now i’m stupid…

My thinking is too slow, I’m not sharp and quick like I used to be, I’m not even funny anymore (and I used to be a laugh and a half all the time), and who would want to bother with me?

Geez.

It’s bad enough that I have to contend with the physical and logistical issues, but when that voice gets going… well, the only thing to do is go to bed.

I managed to do that eventually, but not on my own steam. I had to be guided to bed and put away like a cholicky baby. I friggin’ hate when I’m reduced to that. But when I’m in the midst of that storm/tsunami, I cannot for the life of me pull myself out.

For future reference, I need to keep the image of the tsunami in my mind, when I feel it coming up. So I can get to higher ground. Tell my spouse I need to take a break, and remove myself to my bedroom or study, to simmer down. Just get myself out of the way of the wave. Maybe go out for a walk in the woods. I did that yesterday at the end of the day,  and it helped tremendously. Yes, the walk in the woods — climbing up to the top of the nearest big hill — helps me a whole lot.

I also have to have a talk with my spouse about this TBI business – it’s not okay for them to talk to me like I’m an idiot, which is what they’ve been doing more and more over the past year. Apparently, they seem to think that because my memory is a bit spotty at times, and my processing speed has slowed, I’ve lost my innate intelligence. Either that, or they have always acted this way, and I’ve just recently stopped allowing myself to be intimidated into hiding my issues from them. That’s always a possibility.

So, there are three main issues I am contending with — the wave of emotion that cannot and will not be stopped and can only be avoided until it calms down… the voice in my head that tells me I’m stupid… and the voice I live with that tells me I’m impaired. The first one, I just have to be mindful of and learn to avoid being swept away. The second one, I have to either ignore or actively argue with. The third I have to have a serious talk with — and possibly involve my neuropsych to explain to my spouse that my relative weaknesses are manageable and don’t mean I’m reduced to a simpleminded shadow of my old self. Some days it feels like that — like yesterday — but it’s not the truth of the matter.

But ultimately, the bottom line is, here’s the #1 Lesson I (re)learned over the weekend:

I have to pace myself. If I have a big day, even if it is a really good big day, I need to take the next day OFF and SLEEP. Rest. For real. Nothing else matters. No distracting entertainment is worth the price I’ll pay for exhaustion.

Achieving more by doing less

I am really resisting writing this post, but I have to put it out there for the sake of honesty — and also to get it into my head that this is the way things are now.

It’s not that what I’m thinking about is a bad thing, or even an unpleasant thing. It’s a new thing — a true thing — that I’ve been resisting for as long as I can remember, much to the dismay of my family, my coworkers, and my neuropsych.

I hate having to admit that I have been wrong, and they have been right… but in this case at least, I have to admit it:

I get more accomplished, when I do less.

Now, it might not seem like that big of a deal, to admit it. What’s the big deal?

Well, people have been “on” me for years, that I do too much. I take on too much. I have too much on my plate. I’m spread too thin. My spouse has been lecturing me for years, that I don’t relax enough and I have too many projects going on. We’ve actually had some pretty bad fights about it. I defended my hyper-busy-ness with every fiber of my being, till the bitter end, and it’s not helped our marriage at all. But I was convinced that I was right, in having twelve balls in the air. I felt so energized. Like I could do anything. And it never seemed like there was a problem. If I didn’t finish things, so what? They were boring, I told myself. And I needed a fresh start.

Well, that outlook has modified somewhat over the past couple of years that I’ve been working with my neuropsych.  Taking a long, hard look at my patterns on a regular basis, I’ve realized that being super-busy is often a direct result of anxiety. It’s not about positive exuberance. It’s not about having a vision of a future I can eagerly step into fully and with all confidence. It’s about existential angst that is welling up and driving me ahead of it, like a wild stagecoach driver whipping the team of horses into a mad gallop… in the meantime not holding the reins or guiding them in any particular direction.

This mad gallop is plain to everyone else’s discernment. It’s obviously a ploy on my part to avoid life, rather than engage with it. But it is disguised from my view by something in my perception that interprets a mad dash towards whatever comes to mind as a positive and life-affirming thing ;}

Over the years, countless people have tried to get me to stop and look at what I was doing, but I resisted — and resented — their “interference” with my grand plans. I wasn’t planning, of course. I was just flying willy-nilly in every and all directions, for the sake of flying willy-nilly. Nothing more. And when I got to a point where I couldn’t continue with what I was doing, I’d drop it… and then wonder, sometimes years later, why I ever quit what I was doing, if I was so devoted to it.

Crazy.

Well, as I mentioned, that’s been changing over the past year or so. Once I started logging all my activities and tracking them — for real, not in some quasi-reflective journal entry that rambled on about this and that for pages on end — I started seeing what was really going on in my life, and I wasn’t pleased. I looked back on all the projects I’d started — each one seeming like the thing that was going to catapult me to greatness and/or solve all my personal problems through professional success. What I saw was not greatness, but whatever-ness. Oh, man… what a wakeup call.

And I started to admit that maybe I was spending an awful lot of time on things for the wrong reasons. Maybe I was spreading myself too thin. No… obviously I was spreading myself  too thin. Judging by what little I was getting done versus what lots I was putting into my efforts, my approach was not effective. It was downright disastrous.

So, I decided to change things up. I swept a whole bunch of projects off my plate. I trimmed the fat off my docket considerably, tabling projects I thought would be cool, but obviously demanded a lot more time and energy and manpower than I could muster. I decided to do without a lot of the lists I made for myself. I also quit imagining I was going to have these multiple career paths, and be able to pick and choose between the cream of the crop, on down the line, whenever I chose to switch my path.

And it was working out pretty well. Suddenly, I had a lot more time to devote to my pet projects — the really pet ones, that is. I could focus more on the details that had slipped by me before. And I had a lot more bandwidth to do the things I enjoyed during my free time. Sleep hasn’t appealed to me much over the past months, because I was still totally into the idea that I could continue to keep up a blistering pace on a select few things — for the fun of it. Literally. I felt really “on” at work — I felt like I was really making headway and was taking the tiger by the tail.  Woo hoo – right?

Um… not so much. Now, months on down the line, I find myself worn out, all turned around by myriad details that once seemed so clear to me, and not delivering at the rate my boss wants me to. My thinking is not clear, my relationships at work are suffering, I feel like I’m slipping into a hole of my own digging, and I’m battling to get myself out. I find myself taxed and tapped, angry and raging and resentful and antagonistic and defensive and increasingly volatile… saying things I wish I hadn’t… and my marriage and work situation are both suffering as a result.

Here, I’d thought I was supporting my family and my coworkers better by driving myself like a crazyperson, taking on all sorts of tasks, when all I was doing was driving myself — and my spouse and my coworkers — crazy.

Which brings me to what I’ve been learning — the hard way — over the past couple of weeks.

I actually perform better, and I accomplish more, when I do less.

… As in, when I work in intervals — planning and thinking things through ahead of time, then mustering my energy and tackling tasks with full attention and focus.

… As in, when I spend less time on busy-work, and I devote the bulk of my attention to strategic and tactical planning and implementation, saving my logistical energy for select tasks — no more than two or three a day.

Indeed, I do better, when I tackle less of the little niggling details work that’s just filler for my time and is more about my brain thinking such-and-such is important, when it’s not really.

And I accomplish more when I don’t insist on taking on this mountain of everything by myself, as I’ve always been prone to do.

Truly, the practice of only doing 2-3 significant things a day, when I used to tackle at least five-to-ten times that amount, is a huge change for me. It’s a difficult change… An unsettling turn of events. It makes me nervous — incredibly anxious. I feel like I should be doing something. But during those stretches when I’m “doing something” to the tune of 20 deliverables a day, and I look back on my notes about what I actually accomplished, well, the results are a lot less impressive, than my fantastical plans.

But if I break it all down and pick and choose from the things I need to get done and don’t worry about the other things, till I get the most immediate couple of things done, it’s friggin’ magic, man.  I get waaaaaay more accomplished if I take things 2 and 3 tasks at a time and do them in an extremely focused and intense fashion, than if I “pace myself” and take on 20-3o items (no joke) at a “reasonable pace”.

They say timing is everything. It’s true. It’s even more true that the right timing in the right way for the person in question is more-than-everything. Some people can go slow and steady through a mountain of small details. I, on the other hand, drown in those details. Just like there are slow-twitch muscles that long-distance runners use, and fast-twitch muscles that sprinters use, I’m more of a fast-twitch kind of person. And if I slow down to go at a “reasonable” pace, I’m toast.

So, there we have it. I’ve had my helping of crow for the day. I have to admit, it feels good to say/write it out loud, but it’s been a long time coming. And I have a lot of work to do, to reverse the damage that’s come from ignoring and denying the truth about how I work best — and worst. But reverse this, I will. I’m the comeback kid. I’m not going to quit till I get where I need to be.

Even though I know it’s good for me and it’s the only way I can really work effectively, the idea of only doing a few things  a day still makes me intensely anxious. I don’t expect to get used to it overnight.

But you know what? Doing a little bit at a time in a very focused, intentional way gets me there. And since actually getting there is what matters to me (and my spouse and my coworkers and my boss) — even more than the “journey” on the way — that’s what I’ve got to focus on. Results. For real. Not plans and methodologies. Results. What works. What works for me.

Onward.