I had a very productive weekend. A lot of folks tell me to slow down and do less, and it’s important to keep balanced. The thing is, I actually am able to keep balanced while doing more. Because I know how to do things in a pretty efficient way.
Plus, I have a ton of experience that I can use — and I do.
Only I do it much, much better than ever before.
Once upon a time, I was constantly driven to go-go-go, to do-do-do. It was a heady, exciting way to live. But it wore me out. I got tired. And then I lost sight of what I was doing and why I was doing it.
Of course, I had no idea that my history of TBIs was driving me, or how it was affecting me when I got tired.
Now I know. And now I can manage my energy levels — lie down and take a nap when I need one… get up and get to work, if I have the energy… and really pay attention to the things that mean the most to me, all along the way.
I think I’m still as driven as I was before. Maybe I’m even more driven…
To make a difference in the world
To be a positive influence, no matter where I am
To make dreams come true, for myself and others
To really, really help
Because more is possible than anyone seems to believe anymore.
Yeah, I know… the world is in a mess. Political turmoil. Drama. Threats of war — or outright war. Territorial disputes. Money, power, influence, control. Everybody’s churned up, worked up, and telling tales of doom and gloom.
And I used to get so bent out of shape about things like this. As though there were anything I could do about it. And it wore me out. It tired me out, it made me anxious and agitated, and that was no good.
I had no idea how fatigue affected me.
So, I couldn’t manage it.
Angry, tired, frustrated. I was always that way. If I wasn’t all three of them (which was often), I was at least one of them.
And that was no good. It just stopped me at every turn — the fatigue, the agitation, the distractions.
Meanwhile, I had no idea why nothing ever worked out for me, long-term.
I thought about this a lot, this past weekend, as I was systematically working through my list of errands. Things I had to do for others. Things I needed to do for myself. I thought about all the years I spent working towards my dreams, only to have them fizzle out. And then never understanding why that was.
Now I know why it was. I got tired. Fatigued. And then I got distracted and scattered and angry and defeated.
I’m not blinded to that, anymore.
Now I know.
Now I can manage.
I don’t have to settle for less, anymore. I can actually finish things I’ve started.
I’ve been doing better about taking care of myself, lately.
I guess I just got to a point where I realized that pushing myself constantly wasn’t paying off. I’ve always been driven. I’ve always been motivated. I’ve always wanted more and I’ve wanted to see what all I was capable of doing and being and becoming.
I’ve lost sight of the basics more times than I can count, but that gets old after a while.
So, I’m focusing on the basics. I’m keeping my routine going, getting my exercise every single morning — sometimes pushing myself a little harder, sometimes taking it a little easier — eating right, taking care of business as I go through my day(s).
The more I focus on the basics, the more I tend to my foundation, the stronger I am, the more stable I am. And it puts things in perspective.
It’s Friday. I got up early – couldn’t sleep, partly because of work excitement, partly because of being excited about the weekend. I’ve had a few hours of productive working on my projects. I solved a big problem that had stumped me for the past few days. I’ve had my breakfast. I’ve had my big glass of water. And I’m moving forward.
With my foundation in place.
It wasn’t always this way, of course. 13 years ago, my life was starting to fall apart. I’d gotten a nasty concussion about a year before, and I had no idea how it was affecting me. Things were just dissolving, and I didn’t understand just how much they were. All I knew was, life had gotten about 1000 times harder than it had ever been. All I knew was, I was stressed out more than ever, I was having so much trouble concentrating, I was emotionally volatile, my temper was all over the place, and life was increasingly impossible.
I nearly lost everything.
What turned it around was simple — focusing on basics. Developing a routine and using checklists to keep myself on track. Getting to know myself again and figuring out how to get through my day in one piece, without losing it over every little thing.
It was simple. But it wasn’t easy. It took constant work. It took sustained focus. It took years.
But it was worth it. And I found that taking care of the basics, being consistent (even boring) was the key to getting back… getting back to myself… getting back to my dreams… restoring my abilities that I’d thought were gone for good.
It was worth it.
And it continues to be.
Focus on the basics. Master the fundamentals. Keep working, keep refining, keep “iterating” from one improvement to the next… and stay steady. Don’t give up. Just be stubbornly committed to my goals and objectives.
And rest. Plenty of rest, good food, clean water. Restoration of my energy stores.
Brain injury is a brain injury, and as much as we may say “each brain is different, each injury is different,” we still need to look at the ways that each kind of injury is similar to others. And the experiences we have can be quite similar.
Loneliness, isolation, confusion, not feeling like yourself, getting angry quickly, mood swings, and let’s not forget the bone-crushing fatigue and the embarrassment that comes from not being the person you used to be… They are all things brain injury survivors have in common, and it’s helpful to actually treat people accordingly.
I honestly don’t understand why more emphasis isn’t placed on the experienceof brain injury. That’s what trips us up, quite frankly. That’s the thing that makes our recoveries so much harder — the experiences we have and the effects those experiences have on our selves, our Sense-of-Self.
Well, that’s why I’m here. To speak up for those of us who tend to get stuck in our post-BI experiences, and need to see there’s actually a way out… Because there is. There is always hope — even in the most dire cases. Nobody can tell me different. That’s just how we’re built — to amaze… to heal… to grow… to learn. And learn some more.
Here’s a quick summary of the different types of brain injury:
Acquired Brain Injury (ABI)
includes things like stroke and anoxic (being without oxygen) brain injury. Some consider traumatic brain injury to be an acquired brain injury, because it “is damage to the brain that was not present at birth and is non-progressive” (See The ABI Manual for more). Personally, I wouldn’t call it “non-progressive”, but everyone’s experience is different.
is what people often call a “mild” TBI. Concussions are sometimes considered less serious than traumatic brain injuries, and a lot of people consider a TBI that clears up after a while, to be a Concussion.
Most people think of vacation / time off, as an opportunity to kick back and relax, put the cares of the world on hold, and just float through life without a care in the world.
Those people, however, have very different lives from mine.
My “vacation” is a lot of work, actually. I’m off my routine, so I have to spend a lot of energy figuring out what’s next. Regular mealtimes and menu items are different. I’m fixing three meals a day for my spouse and me, instead of just breakfast for me, then supper for us both. I have to help my spouse get around, as they have limited mobility and need extra time and help just standing up and moving from place to place. Everything moves at a slower pace, and I don’t get as many spontaneous opportunities to discharge a lot of the energy I have.
And when I do kick into high gear, it disorients my spouse and they get pissed off at me for moving too fast.
So, I work around it. I have to. I go out into the day and run around. I sprint across parking lots. I lift and carry twice as much stuff as I normally do. I intersperse my slow times with intervals of bursting energy – flash, flash, flash – and then “back it down” for my spouse’s benefit.
Last time we took a week’s vacation, I lost a couple pounds, by the end of the week. So, it’s really not so bad.
It’s good to change up the routine, in any case.
And find peace where I can. Excitement where I can. Enjoyment where I can. Life for me is less about having things handed to me — like opportunity — and more about finding what I’m looking for when I need it. Seeing opportunity where nobody else does. Finding peace in the center of the storm. Making my own excitement.
It’s all a big swirl of potential, to me. My job is to find the experiences and the chances I’m looking for, in the midst of it all, and see what I can do to bring them to life.
That takes work. It takes concentration. It also takes patience and willingness to stick with things that put most people off. Needless to say, I’m up for it — and in the end, it’s an investment of my resources that truly pays off. My TBI recovery is a case in point.
So, while the fantasy of having a whole week “off” work is appealing, the fact of the matter is, I’m just trading one kind of work for another. But in the end, that’s how I want it. And even if I weren’t loaded up with all sorts of extra domestic things to do, I’d find other work to occupy me. That’s how I roll.
The last few days have been extremely busy. Jam-packed with work, from 8 a.m. till 6 p.m.
And then I need to head home, buy supper on the way, make supper, eat supper, go to bed.
I’m tired of this. But I keep at it. Because it’s what I do, it pays the bills, and who knows what’s around the corner?
My work situation us changing – my group got moved to another organization, and now we find out (in a few months) how it’s all going to shake out. They will probably break up our group, because a small group of people do many things, each, whereas in the team we joined, people tend to have one job, not five (like I do, now).
They just have to figure out where to put us.
Personally, I’m fine with this. I hate how things are done in my current group. It’s too jam-packed. Too compulsive. Too frantic. My boss works pretty much ’round the clock, and the rest of us are expected to, as well. That just doesn’t work for me.
It’s fair to say, I have a very low quality of life, right now. Even though my job seems secure, my mortgage is paid, I have food on the table, etc. And I do a really good impression of someone who’s positive and upbeat and a “catalyst for change”.
I’m just exhausted. And it’s hard to see the point of much of anything, when I’m feeling this wiped out… all the time.
But still, I have to keep myself going, because nothing lasts for ever, and I might just be able to find a new situation in the new year. I’m hanging tight, for the time being, waiting this out… waiting till I get my vacation time under my belt… I have three separate weeks off, between now and the end of the year, and I’m going to take advantage of it.
Cut my losses. Keep the dread and drama to a minimum. Just keep going. Just keep puttering around at my little projects and side interests.
Just keep on.
Every now and then, I find something that lifts my spirits. But every Thursday and Friday, like clockwork, my mood begins to plummet.
So, that being said — since I recognize it and know it — I can actually work with that. Just don’t pay any attention to the unhappiness that nags at me. Just don’t jump to conclusions about how feeling bad at the end of the week translates into having a terrible life. I don’t have a terrible life. I have a pretty excellent life, in fact. And I can’t let the surface feeling I get — the tarnish on the normally shiny surface of my life — dim my view of everything around me.
Grab a rag and shine it up. Realize there’s more to the story than how I’m feeling at this very moment. Do what I can, when I can. And live my life.
I’ve got a long weekend ahead of me. What shall I do with myself? Three days off, with no appointments, no obligations, no requirements… what a luxury this is.
It’s almost like going to my own desert island. My spouse wants to take it easy, too. They’ve been doing a lot, lately, with events every weekend, and some additional events in between. They lead community gatherings — drum circles, song circles, gatherings where people share meals and life lessons — and it’s a lot of work. I used to attend a lot of them, myself. But it got to be too much. I already have a full-time job and a handful of side projects that keep me more than busy.
I prefer it that way, actually. Keeping busy, keeping engaged, making things, coming up with new ideas… that’s what keeps me young. Feeling young, looking young, living young. It’s a challenge, at times, because fatigue gets me down, that whole brain fog thing sets in, I get angry and agitated, and everything feels like it’s melting around me… falling to pieces. Just falling away. And at those times I sometimes just don’t care about anything. Just don’t. Can’t be bothered.
I’m at the point now, where I’m fine with not being busy. I look back on how things have been in my life for the past however many decades — okay, let’s call it 34 years, since that’s how long I’ve been majority age and in control of my own life — all the time I’ve spent on my projects, doing and doing and doing some more… making things, exploring… all that…
What’s it been for?
What have I accomplished? What have I truly gotten done? I do all this work, and then what comes of it? Clearly, I’m not rich and famous. I’m doing okay with a house (mortgage) and a fairly reliable late model car (and car payment), but I have no financial safety net, I’m not entirely secure about my future, and I just feel like crap so much of the time.
Not that feeling like crap matters… It can’t matter, because then I’d never get anything done. If I only did the things I felt like doing, I’d be homeless. Being in pain, being tired, being confused, being overwhelmed… that’s the price I pay for what I have, and if I let it get to me and give in to it, then everything falls apart. Part of me wishes I could fall back on my diminished state as a reason not to move forward. To file for disability (not that I’d get it, because I obviously am capable of working). I’d love to just check out for a while. Decide what else I want to do…
Well, I have three days to chill, so I’ll do that. I actually have more like 3-1/2 days, because everybody’s going to be gone as of noon, today, making a run for it for the last long weekend hurrah till the holidays. And we all know the holidays are no simple walk in the park, so do they even count as time off?
It’s all relative, of course. And things may be changing with my job, since my group got moved to a different organization. We’ll see how that goes. In the meantime, I’m submitting my resume for other jobs, not expecting much, but also not chasing after things. It never works out, when I chase. Plus, it’s exhausting.
So, this week is really for chilling out and giving myself some room to breathe. I can go out for walks down the road. Or I can stay in bed and read. Or I can sit around and watch movies all afternoon. Or I can spend extra time exercising, since I’ll have the time to spend. My choice. Time to take the pressure off, and just BE.
I got almost 10 hours of sleep, last night. Nothing short of a miracle, considering how little sleep I’ve been getting lately. I plan to get even more this weekend.
As much as I want to quit my job (and after the past month, I really do), I’m going to stay put, most likely.
I just get tired.
Very, very tired.
And when I’m wiped out, nothing is good, my productivity slips, I don’t feel connected to anyone or anything or any of the work I do. I hate my job, I hate my life, I hate the world.
Or, I get too tired to feel strongly about anything. And I just drift into a sense of meh.
And sometimes that’s the worst thing of all. Feeling strongly negative about anything is at least feeling something.
Meh… that’s feeling… nothing.
I wish I could bottle this feeling and sell it. I know a lot of people who spend good money trying to get to this state of numbness, feeling nothing. I’d be rich.
The weird thing about it is that the weather has been fantastic, lately. I’m far from the storms in Texas, and the autumn is now picking up speed. The days are getting shorter. The shadows are lengthening. It’s cool at night — cool enough to turn on the heat. I’ve been looking forward to these days for weeks and months, now… and yet, I find myself so tired.
Well, it’s only partly because of the season change. It’s also because of work. I have been so busy, just pushing and pushing to get things done. I haven’t had much time to think things through carefully — just in reaction mode all the time.
And then when I do have time to settle in and think… I’m all out of fuel. Wiped out. Zombie-fied.
Well, I have a long weekend coming up. And I’ll probably just check out tomorrow afternoon before the day is up. I may cut my day short at noon and go back to bed. Wish I could do that today, but I have a dr. appointment this afternoon, so there’s no rest for the weary. And then I have to join another couple of conference calls after the appointment.
I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.
I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.
I think I’ll read that book again. I think I read it years ago, and I need to read it again.
I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.
I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.
As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.
That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.
That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.
I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.
And so I will.
I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.
I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I know I need to do. And just keep moving on.
The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.
Will the world step up and help me with my problems? Not if I don’t ask.
Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.
I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.
A new chapter is on the way, and I’m actually looking forward to what’s to come.
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.
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.
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.
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.
I have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:
In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…
It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.
Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.
Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.
The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.
Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.
But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.
The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.
And that’s fine. It’s just fine with me. So… onward.