March is winding down, and Brain Injury Awareness Month (March) is disappearing into the rear view mirror.
My feelings about “awareness months” are mixed. It’s good that additional focus is brought to some issues. But they don’t stop being issues when the month is over, and it sometimes feels like the information then gets eclipsed by other kinds of awareness months.
One of the things that really bothers me about it all, is that it’s so virtual. A lot of it is online, so you get this information download about a topic, but you don’t really encounter real people who are affected by it. No matter how aware you may be about a subject, if you don’t have real-world experience with it, and you can’t put a face and a person to the name of the issue, there’s only so much good it’s going to do you — or us.
Maybe I’m being cynical. Or maybe I’m just being realistic. All I know is, organizing my thoughts and activities around a specified topic that someone else decides on, doesn’t sit all that well with me. Especially because I live with this every single day. Not just for the month of March.
Don’t get me wrong — I’m grateful that people are educating. But I also hope that the education actually goes somewhere and accomplishes something more than… just awareness.
I’ve been having a lot of trouble with my shoulder and back, over the past months. Dealing with all the snow, along with spending a lot of time being sedentary — alternating between slothfulness and frantic activity — has done a number on me.
I’ve been trying to get my shoulder to loosen up, so the pain in my arm eases up. I’ve got a lot of shooting pain, tingling, weakness, etc. in my left arm, and sometimes it also goes over to my right side.
And that’s no good.
I need to keep myself in good working order. Life goes on, and I absolutely need to be up for it all. I can’t afford to get waylaid, especially when we’re talking about just regular life. I know I’ve got some disabilities, and I know I need to make accommodations for myself, but once I do that, I need to stay in the game. I can’t use my intermittent issues as an excuse. No way, no how.
After months of wangling with this pain, I finally found something that really seems to work. I’d been doing stretches and trying to release the tightness in my muscles with movements designed to lengthen them. But that seemed to be doing the exact opposite.
So, I tried something that’s worked for me in the past — doing muscle releases by doing slight tightening and then relaxation. Apparently, a muscle contraction will actually loosen the muscle, where a stretch will shorten it. So, I did some exercises I’d read about (and used with some pretty amazing success) a few years ago.
And lo and behold, I’m finally getting some relief. It’s pretty amazing, actually. The sense of relaxation that comes from it, is a welcome change, compared to what I’ve been dealing with for months, now. It’s not always perfect, and I still have to refine my technique, but I’m learning how to move so that my body isn’t at war with itself.
That’s huge. Immense.
So, now it’s time to get moving, and get on with my day.
One of the benefits of getting older, is that I’m finding out what assumptions I made about my life and future prospects were correct, and which ones were wrong.
One of the things I’ve realized is that it’s not solely IQ-type intelligence, it’s not raw physical strength, it’s not talent, it’s not social connections, and it’s certainly not money alone, that keep a person in the game for the long haul.
It’s a combination of all of the above, which add up to a sum total of hardiness. Just being able to stick it out, no matter what happens, and persevere. It helps to be smart, and you definitely have to learn from your lessons, as you go along.
Live and learn, or you don’t live long.
… as they say.
You need some measure of physical strength, and you need a talent for something. You also need social connections, and you need enough money to get by. It’s the combination of all of the above, plus a certain sense of purpose, an ability to find meaning in your life, that keeps a person going, growing, lasting over the long haul.
And that’s what I’m going for, these days. The whole package. Sum total. And then some.
For years, I thought the secret was to have one of the above in over-abundance, and it would make up for shortfalls in the other areas.
If I had extra intelligence, it could make up for lack of money and social connections. If I were socially connected, it would make up for lack of money and physical strength. If I had talents of some kind, it would cover for my IQ shortcomings post-TBI.
But chasing after “highs” in certain areas actually made things much more difficult for me. Because I was burning out, and my focusing on one area only (making money), I was coming up short with my strength and social connections. Concentrating only on building my physical strength also cost me extra money and took time away from building other talents.
A balanced approach is better, by far.
And that’s where I’m headed — especially in light of my TBI issues. Recovery is an additive thing; different parts of life combine and augment each other, and if I’m not getting the full range of exercise in my life, the whole deal suffers.
And that’s no good.
TBI recovery is a whole-person activity, and it continues through your whole life. I don’t think there’s every one time or place where we’re necessarily “recovered”. We can so easily slip back into thinking that our brains are still wired they way they used to be. Muscle memory, and all that. So, we have to keep on top of things and continue to adapt through the years.
But that’s a good thing. And if you think about it, that’s pretty much how life goes, no matter what your status or station in life. It’s just got to be more deliberate with us TBI survivors. See, we can have really excellent lives, even if our brain have been permanently changed. Life goes on. The human system continues to evolve.
Life has thrown me a bunch of curve-balls, lately, and I’m feeling it physically. It’s been a while since I’ve been this sore — lots of lifting and carrying and pushing and pulling, over the past few days. And despite the pain, my body is actually responding well to it.
I’m sleeping better. I’ve been getting about 8 hours a night, for the past few nights, where I was stuck at 6 hours for quite some time. I need 8, or I can’t function well, and things start to fall apart.
I’m also thinking more clearly, with less static and “clutter”.
I’ve been doing more stretching, which has really helped, too.
Spending less time in front of the computer has been great. Because let’s be honest, not that much changes, from day to day, despite the steady stream of sensational headlines and “news” stories that are all just different angles about the same-old-same-old. I can literally check in every week or so, and the story will still be the same. So, I’m leaving it alone, and that’s making me happy and freeing up a lot of time.
Also, spending more time exercising is helping. I’ve been riding my bike for 20 minutes a day for years, but now I’m changing things up and focusing on burning calories. I’m keeping at it, till I burn 400-500 calories, and not stopping before then. That’s making a difference, I think. Ultimately, it’ll help my weight (I’ve regained weight I thought I could keep off). And it’s also good for my mental health, because I feel like I’m actually doing something. Plus, I can be more involved with my diet and its effects, overall. I need to do that. Eat more variety. Get better nutrients in me.
It’s funny, yesterday I was feeling really hungry, and I started to go after my usual crackers and cheese (protein helps). But then I stopped and decided to take some of my multivitamin “gummies”. And when I did that, it cut my hunger. I suspect that craving feeling is my body telling me it needs more nutrients, but when I go for the cookies or crackers, instead of actual vitamins, it just disguises the need and distracts my system with the sugar rush.
So, now that’s going to be my go-to. Instead of snacking, take some vitamin gummies. Not overdose on them, but just the usual recommended amount. I’ve got a number of different types that have been sitting in my cupboard, instead of me taking them. So, now I can take them. I just need a way to work them into my life, in order to get with the program.
Huh, it’s funny. My brain very quickly decides that it’s done with stuff — exercise and physical activity, especially. But my body wants to keep going. Like with the bike riding. If I can just get my mind off its desire to go do something else, I can keep going with my workouts. And when I’m working hard, my distractable brain can come up with all kinds of other things it’d rather be thinking about. But I need to keep working. Keep my body going.
So, I just need to keep this in mind, when I’m trying to keep myself on track. Keep my mind out of the picture, and let my body continue on its pace. And watch what happens. To my health — physical and mental.
My brain wants to quit, but I should know better than to listen to it.
I should know that by now. And yeah, I do. I just need a reminder. Like now.
This is the story of my last three days. Snowstorm. Trees down. Wires down. Not much going on, other than winter. Storms. Electricity out. No heat, no running water, no television, not much connection with the rest of the world.
Living on battery power, using the mobile phone to contact the rest of the world. Staying close to the fireplace, keeping the fire going all night long, finding different ways to get meals and keep occupied. Waiting for the power to be restored. Hearing one thing, then another, then another.
Waiting, just waiting. Watching the snow fall. Moving it off the driveway. Off the roof. Off the back deck and stairs. Lots of snow. Half a meter’s worth. 18″ worth. Heavy, thick, packed snow.
And now I feel it. In my back, my legs, my arms, my shoulders. Bruises all over my legs, where I slammed against the snowblower. Cold. It was cold. And the all-over ache that comes after hours and hours of being tensed against the cold. Countless trips up and down the stairs to get more wood for the fire.
All in all, it wasn’t terrible, being out of power for two days. Longer than that, and it would have been a problem. We would have gone to a hotel, because my spouse can’t afford to get sick, and they’re more susceptible to cold than I am. We came this close to going to a hotel, then decided against it — the place we called said there were a lot of families checking in, because they lost power, too. And having a lot of kids running and screaming (’cause that’s what kids do, when they’re cooped up, let’s face it)… well, that wasn’t the most restful option.
Better to stay in our own space and try our best to stay warm and dry. Wait it out. Gather around the fire. Rest. Wrap ourselves in blankets and relax. Wait it out. Just wait.
And we did. Power was restored 3 hours sooner than they said it would be, and that was fine. In the bargain, I scored some major points at work for continuing on through with my work, despite having no electricity or heat or running water. I managed to logon to my work by connecting through my phone and then sitting in my running car to keep the power going to it, so I could complete some must-do tasks.
And now I have a reputation for being that much more of a can-do person, with total commitment to getting the job done. So, something useful came of it. Which is fine.
So it goes. I handled this storm considerably better than I handled others in the past. I kept my cool. I kept focused. I wasn’t a total jerk to my spouse. And I came out of it ahead of the game. I’m wiped out and would love to sleep for 12 hours, but I’m also keenly aware of how much good it did me to really move. And not spend all my time in front of a computer, like I’ve been doing for the last however many years.
It was good to have the enforced break. Away from the constant hum of machines, away from the low-level buzz of non-stop electricity. Listening to the wind. Getting out in the snow. Just living a very basic life, and being profoundly grateful for everything I have.
Now it’s time to go get some supper. The refrigerator isn’t smelling all that great. It stayed cold, but not cold enough. So, off I go to replenish it. And get something really good for dinner tonight. Something filling, substantial… and hot.
No doubt about it, brain injury changes you. In some cases, a lot.
Your personality can change dramatically… like mine did after my mTBI in 2004. I went from being a positive, pro-active individual with an indomitable spirit, to an anxious and easily upset “hothouse flower” who flew into a rage over every little thing. I went from being attentive to everything others needed from me, and going out of my way to ensure they were protected and well-cared-for, to being selfish, self-centered, and oblivious to what other people wanted and needed.
Granted, there were other mitigating factors that came into play, but the difference between pre-TBI and post-TBI was remarkable.
I can say that now with some measure of calm, because after 12 years of really working on my recovery, I’ve made huge strides and am better off — all across the board — than I can ever remember being.
But back in the day, my recovery wasn’t a foregone conclusion. It was questionable, in fact.
The thing that made the difference for me was not giving up. Having help, in the form of a neuropsych who would just talk me through my week, every week, and let me sort things out. They would question me, when I was on the verge of going off the rails, helping me sort through the mass of details to find a common thread that I could hang onto. For just one more day.
Just one more day.
And over the years, one more day led to another and another and another, and those days became weeks and months and years… till I stopped to catch my breath and look around. And I realized I had come through on the other side.
Everybody’s trajectory is different, of course. And along the way, we need to adjust. I had to let go of some dreams I’d had for such a long time. I had to let go of progress I’d made before my accident. I had to settle into a different life path. And I had to make peace with my losses. But that all led me to the light in the distance. And in the end, will not having every single dream come true make me less happy, less productive, less capable?
Nope. That’s just how things go. I’ve accepted that, now. And it’s good.
The thing is, if I’d listened to the experts, early on, I probably wouldn’t have gotten here. I was told:
I was exaggerating my issues. I wasn’t. If anything, I was understating them.
Getting hit on the head wasn’t a big deal. NO, it was a big problem. It nearly cost me everything I’d worked so hard for.
My brain would just recover on its own. It didn’t. I had to work with it constantly to get it to a place I was happy with. It took years to do that.
TBI recovery doesn’t happen. Obviously untrue. It did happen.
These are just a few of the things I either read or was told. And I didn’t buy any of it. I knew I was in trouble, and I did everything in my power to fight for what I needed. What my brain needed. What my spouse and the life I’d built up all needed.
So, let’s rethink brain injury, shall we? Yes, it’s serious. Yes, it takes a toll. But the damage is not irreversible, and it can be followed by incredibly recovery.
How amazing would it be if everyone understood that.
It’s brain injury awareness month again. A few years ago, I think I didn’t even realize it until the end of March, so I’m ahead of the game, this year. Of course, the only reason I found out, was that I saw a sign posted on the door of an adult daycare center that’s located in the same building I had a meeting in, earlier this week.
For this month, I’ll continue my focus on recovery and rehab. Yes, it’s absolutely important to understand concussion and TBI and brain injury in general. What’s often missing, is the focus on recovery and the possibilities for getting back to a really great life.
Because even if things have changed dramatically for you because of brain injury, it’s still possible to have a rich and fulfilling life. Just because your brain changes, doesn’t mean your life is over. And too often, rehab folks or the medical establishment just give up on us. That’s partly because of insurance, but it’s also because they just don’t know about or see people who are actively recovering from brain injury.
I love my routines. They’ve saved my s$$ over the past 12 years. They helped me retrain my body and brain to be a heck of a lot more functional than they were in 2006. And when it comes to TBI recover, routine and repetition are my friends.
Seriously, they’re like the secret weapon against the disruptions of TBI. Just figuring out how to do things exactly the same way, over and over, till that way become ingrained and you don’t have to think about it anymore… it’s magic. And it does so much to rebuild and solidify the new connections that replace the ones that got frayed and pulled to pieces in the brain injury itself.
Every now and then, it’s good to change things up, though.
That’s where I am, now. I’ve done a lot of hard thinking, over the past weeks and months, and I realize I need to have a different focus in my daily life. I need to spend a lot less time focusing on my career and professional prospects, and spend a lot more time focusing on my health and quality of life.
I’m not gonna lie — I really had to double down on my work situations, over the past years. I was in a downward spiral of sorts, in one overly challenging job after another, working in very hostile conditions that eroded my physical and mental health. And the past 3-1/2 years have also been a real challenge, in some ways. The thing that’s made it the most challenging is that I got caught up in ideas about advancing, getting promoted, moving up in the world. And that sucked me into a vortex of caring about what other people thought of me, what other people said about me, what other people did to me at work.
And that wasn’t a good use of time. Because here I am, years later, no further along on my professional path (even set back, compared to where I was before), and just looking back at a whole lot of frustration and dead-ends.
Don’t get me wrong. I’m highly ambitious. I’m driven. That’s for sure. But at some point, being ambitious according to someone else’s rules is just a bad idea for me. I need to be ambitious according to my own rules. I need to drive towards things that matter to me — having decent relationships with people, doing my best work, learning and growing as I go — rather than getting caught up in other people’s power games.
Somehow, those games never work out in my favor. I just get played.
So, I’m pretty much over that. Time to focus on other priorities. Time to funnel my energy into things that are going to build me up, not tear me down, and pay off in the short- and long-term, when it comes to just doing a decent job.
Heck, I’m not even sure I want to get promoted, anyway, considering the kinds of people who are climbing to the top, these days. It seems like a much better use of my time to focus on my mental and physical health… learning interesting things and applying them to my life… sharing what I know…. and just having the best life possible. So long as I make enough money to support myself and I have the time and opportunity to do something truly useful with my life, that’s what matters.
And that’s where my head is at today.
Ha… we’ll see how I’m feeling tomorrow… or next week… 😉
After a brain injury, it’s awfully easy to get stuck in every single moment.
Everything seems different. Everything is different. Your brain has changed, and you have to devote a whole lot of time to each and every moment, as though it were the only one in your life.
Focusing on the present with laser-like attention became my main form of brain injury rehab. After all, I had to retrain my brain to make sense of what was going on around it, and I had to acclimate (all over again) to certain things I had once taken for granted.
Like brushing my teeth and taking my shower and getting dressed in the proper order each morning.
Like washing dishes and cooking and fixing simple snacks without losing my temper.
Like going to bed at a decent hour and getting up to exercise each morning.
The things that I had once taken for granted… well, that familiarity was taken from me, when I fell in 2004. And everything fell apart.
We don’t realize till it’s gone, how much we really do take for granted, and how much we depended on the predictability to structure our lives. When it disappears, all hell breaks loose. Literally.
But now, after 10+ years of really drilling down on the details of every day, moment to moment, I seem to have turned a corner. And now I’m looking at the “long haul” — what’s ahead of me, not next week or next month, but 10 years down the line… 20… 30… and beyond. I wasn’t born yesterday, but I also come from a long-lived family, and I can realistically expect to live at least 20 years longer than my peers. Maybe even longer than that.
So, I’m shifting my attention away from immediate stuff and concentrating on the big picture. What else is out there? What else can I learn? How else can I grow? Where can I find interesting things to expand my mind and life?
It’s all out there, waiting for me. And it is for you, too.
Even though I know what it’s doing to the contestants — potentially causing brain injuries that will screw them up, sooner or later — I still love to watch the sports.
There’s something about seeing people wade into a fight and then come out on the other side (victorious or not) that’s very cathartic for me.
I think that’s because it reminds me of my life. I feel, on any given day, like I’m wading into a fracas of some kind. Either it’s work, or it’s just the everyday occurrences, or it’s dealing with the slings and arrows of the world. But whatever the nature of it, I feel like I’m getting beaten up… like another “team” is gunning for me… and like the players and fighters I love to watch, I have to keep my act together and keep going, till the end of “regulation play”.
I think that I’m not alone in this. A lot of people I know feel constantly attacked by life. We know we’re gonna get roughed up. That’s a given. We know it’s gonna hurt. We know we’re going to get pushed and pulled and trampled in the process, but we have to keep going.
Like the players on the field.
And like those players, we take a calculated risk, every time we engage with life. We know the odds may be stacked against us, but we still keep at it. We stay in the game. And like so many of those players and fighters, even when we should probably sit out to let our brains recover, we head right back in there, as soon as we can. Because that’s the only way we know how to be, how to act, how to get along in life.
Personally, I cringe, when I think what’s being done to the “heroes” on the field and in the ring. I know what’s being done to their brains. But life is rough. It’s tough. It beats you down and knocks the stuffing out of you, time and time again. Football players and fighters are like our proxies. We fight to live, they live to fight.