Brain injury comes in a number of different “flavors”, but it affects us in very similar ways

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 experience of 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.

ABI Resources:

Stroke

happens either when a clot blocks blood flow in the brain (called “Ischemic” stroke) or a blood vessel pops and there’s a brain bleed (called “Hemorrhagic” stroke)

Stroke Resources

Traumatic Brain Injury (TBI)

is related to trauma to the brain that comes from a fall, an attack, a sports injury, or an accident.

TBI Resources:

Concussion

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.

Concussion Resources:

 

Advertisements

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.

Well, not *exactly* time off…

construction cranes wtih a cloudy skyMost 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.

Onward.

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.!

Back at it…

lights streaming through darknessThe 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.

Onward.

Picking up the pieces on my own weekend “island”

desert island with two palm trees surrounded by seaI’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.

Onward.

The adventure continues.

Yeah, I just get tired…

sleeping monkeyAs 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.

Good heavens, how I’d love to just quit.

But not just yet. I’m really just tired.

Working with this headache

head made of mesh with blur and focal pointI’ve been dragged down for the past 5 days with an intermittent headache.

I haven’t been sleeping well, and I’ve been extra stressed at work.

Been drinking too much coffee — not a lot, compared to what I used to drink before, but more than I should.

I’ve also been eating more carbs, which spins me up in to a flurry of quick and easy energy, then crashes me. That up and down roller coaster also makes me get angrier quicker than I’d like. It the crash puts me on edge and eats away at my patience, so I snap at my spouse more. That’s not good.

Gotta get off that roller coaster. Gotta cut out the bread.

I’ve been working out more at the gym, so that’s probably contributed — tension in my neck and back.

Not much more to say about it, other than I have to just use the tools I know I have.  Do the things that work for me. Don’t get spun up over stupid stuff. And just keep going. Just keep steady. And get back to being steady, like I used to.

Onward.

After #TBI – Don’t depend on your brain’s weak systems

hand holding pen, checking off lists on a checklist
Getting stuff done… one thing at a time.

From the Give Back summary of how to fix your brain… This is something I have to constantly remind myself. It’s a hard one, because I hate to think of my system as being weak — or weakened. But that’s exactly what’s happened. And the thinking systems that have been weakened have been permanently altered. So, I need to always keep this in mind. When I forget it, I suffer. And so does my work and my relationships. My whole life starts to go downhill.

3. Don’t depend on your brain’s weak systems for organizing and memory to manage your time and your activities.

  • Get your brain to use your full intelligence to plan your day thoughtfully, a day ahead of time, when you can think everything through well.

It’s practically impossible for me to do this a day ahead of time, because things can change so rapidly with me. From day to day, I don’t always know what’s “coming down the pike”. Stuff changes rapidly — plans change, weather changes, people change their minds about what they’re going to do.

But that doesn’t mean I can’t plan in other ways. The best way for me to do this is break it up — look at my next day plan on the afternoon / evening before… and then check in with myself first thing in the morning. And keep track of things throughout the course of each day. Track it.

  • Write that plan down on a schedule form so that you take no chances of forgetting what you need to do.

Scheduling things has become a lost cause, in general, because things are so unpredictable at work and at home. So, I have a standard list format that I use.

[ ] Thing I need to do

[ ] Really important thing I need to do (I use a yellow highligher)

[/] Thing I am in the process of doing or have started

[x] Thing I have done (I have a green marker to track the things I’ve completed)

–> [ ] Thing I needed to do today, but didn’t get to, so I need to do it tomorrow. (I use an orange marker to make it stand out)

I try to keep a running list of things that I “carry over” from one day to the next. I’ll copy my –>[ ] items onto lists for later days. That way, I can keep track of everything I need to complete.

  • Develop the habit of writing plans and following them, and soon you will be in total control of your time and your productivity.

I agree. The habit of writing out plans and following them (as best I can) has done wonders for my ability to get things done, as well as my self-confidence. I have a support system that works for me. And when I use it (which I admit is not consistent enough), it really helps offload a lot of the mental grunt work, to save my brain for more interesting and important (and challenging) things.

If there had to be one thing I’ve done that’s helped me get back to the level of functioning I’m at now, it’s developing lists and systems around lists, that let me do what needs to be done without having to think too much about how to do it all. Coming up with a ‘standard operating procedure’ for just about everything — from getting up in the morning and going to work, to taking down the Christmas decorations — has made me a whole lot more functional than I ever was, when I was just going with the flow or winging it.

Lists are my friend. They can be yours, too.

Onward.

1. Know that you have a new brain, one that can work well once it is reprogrammed.

hand holding magnifying glass over brain, which is made up of gearsOne of the things I really appreciate about the  Give Back Orlando materials is that they don’t sugar-coat TBI recovery, but they also don’t make it into a “accept your new normal” approach, where you have to resign yourself to everything being so much worse than before. The core message is that you can improve… provided you make some specific changes in how you live your life.

The first change is:

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.

When we’re very young, we come into the world with the capacity to create a whole lot of synapses — connections in the brain that carry information. Over time, our synapses are “pruned”, as our brain refines its ways of doing and understanding things. By the time we get past adolescence, a lot more connections have been pruned than we had, just 10 years earlier.

It’s been said that one of the things that “gets you” after TBI, is that you may have lost a bunch of the connections you really depended on… and that’s a loss.

But here’s the thing, see? If we have “neuroplasticity”, we can create new connections to take the place of the ones we’ve lost. That, to me, is the essence of TBI recovery.

Granted, there may be parts of the brain that are so damaged that there’s no repairing them by present means. Maybe sometime on down the line, but not right now. But the brain is an amazing thing, and we can create a lot more connections than people used to think we could. In fact, the old ways of understanding the brain — that you can’t repair it, if it’s injured… that only certain parts are used for specific activities… that damage is permanent — those old ways have been disproved.

It’s not true.

What IS true, is that with regular practice and the right approach, the brain can be “reconditioned” to perform at, near, or even better than levels you had before.

But you have to realize that change has to happen. You have to deliberately create those new synapses, those new connections, those new ways of your brain functioning. You can’t keep doing things the same way as before, over and over.

You have to realize you have a new brain.

And you have to keep reminding yourself of that, through the course of each day.

It’s like trying to run a Windows 10 program on Windows 3.1 (remember that? I do). It’s just not going to work. Not because Windows 3.1 was so much worse. It was good for what it did. It’s just that the “gears” work differently now.

And you have to accept that fact.

I’m not talking about accepting it because it’s a sad fact that life is going to be so much worse.

I AM talking about accepting it, so that your life can get so much better.

Big difference.

So, that first step is the best kind of acceptance of all.

Again:

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.