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.
It’s snowing again. Or rather, still snowing. So, I’m going to work from home today. Take it easy. Focus on my work. Keep things simple.
I’ve spent the last few weeks clearing out a lot of extra clutter from my life. A lot of old projects were hanging around that were going nowhere. If something hasn’t gotten anywhere in 6 months, I need to learn to let it go. A lot of those old projects were years old — some of them older than 10 years.
Time to let it go. Just accept that they’re not going to happen, and they were never going to happen, in the first place, because I was following a “success template” that works for others, not me.
Frankly, a lot of the “recipes” for success that are out there seem completely foreign to me. They’re all about money and power and influence, which is the default First World mode, I suppose. But it’s just not for me. Personally, I’d rather focus on doing good work and being supported in doing that, withouthaving to do all the marketing mental mojo that goes on.
As we’ve seen in the news, lately, online marketing can really be a problem… especially when it’s used to trick people into doing what you want them to do. Leveraging the weaknesses of human nature… deceiving… manipulating… I’ve been in that world, and it doesn’t sit right with me.
Anyway, it’s time to hunker down, watch the snow fall, and get some work done. I have a quiet day to myself, today. I think I missed a late work appointment I had last night — completely spaced out and forgot about it. So, today, I need to make up for that as best I can.
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.
This is pretty much how my morning looks – me with a cup of strong, black coffee and a notepad with a pen to write down what I’m supposed to be doing, this morning.
Under normal conditions, I’m usually out and about by this time (it’s nearly noon). But today is different. I’m more tired than normal, and I have a lot of catching up with myself to do from this past week.
Reading… blogging… organizing…
Getting myself together for the rest of the day, which will be all about getting my spouse together to go to the even they’re hosting tonight. It’s a lot of work. There’s a lot to remember. I don’t feel up to it, but that doesn’t change the fact that it needs to be done.
I need some motivation. Something to perk me up.
Then again, I think just resting tonight, spending time in my own home in solitude and peace is probably motivation enough. It’s been months, since I had any time to myself. I’ve almost forgotten what it’s like.
Almost, but not quite.
I think tonight, I’ll spend some time organizing my study. I have a whole room with books and workspace(s) for myself, but I’ve taken to using it just as a storage area, where I put things I don’t want to think about anymore. That’s gotta change. For sure.
So, I’ll do that tonight. It’ll be a really good use of time.
And now, out I go into the world today. It’s cold and windy and clear, and I have trash that needs to go to the dump. Recycling, too. And I’ve got to run to the store to get some supplies for tonight. It’ll all get done. I just need to rouse myself and get my act in gear.
It’s been a pretty decent week. It’s been quiet, which is always nice. And I haven’t had as packed a schedule as I did in months past. I also got a little bit of a raise, which is nice. Takes the pressure off a bit.
I’m looking forward to this weekend. Getting some things done that I haven’t been able to do in past weeks, because of weather or conflicts in my schedule. My spouse is also starting to produce more events for the springtime, so that means I get some Saturday evenings to myself. And Sundays, too, because then they rest all day Sunday to recover from the exertion.
March is halfway over, which means there’s only two weeks left for Brain Injury Awareness Month. I haven’t done as much as I’d planned. Not even close. There’s just been so much going on, with snowstorms and cleanup… and then I need to recover afterwards. I’ve also been pretty depressed, on and off, which has put a damper on things.
Of course, it’s all a day in the life of recovery from TBI — especially the depression business. Honestly, it can take so much out of me to deal with everything, it’s amazing I get anything done.
But I do.
And every now and then, I catch a break. Like this weekend, when I’ll have Saturday evening to myself, to do as I please. Make my favorite meal, which my spouse doesn’t like. Watch some shows that I like. Or don’t watch any t.v. at all. Go to bed early. Do as I please.
Fortunately, a lot of my coworkers are out for the week, since their kids are out of school for “spring break” right now.
And in another month, a lot of others will be out, as their kids take their spring break.
So, this is giving me a chance to catch up with myself, which is good.
It’s also giving me a chance to catch up with my exercise, which has lagged over the winter months.
I’ve been working so much, sitting stationary, that I’m really feeling it. I have a stand-up desk at work, but I haven’t been using it as much as I should. Gotta change that.
And so I shall.
Add some more exercise to my daily routine. There’s a stairwell just around the corner from where I sit. I can step away every couple of hours to go up and down the stairs. It won’t take much, but it can pay off with great benefits.
I’ve been riding my bike longer in the morning, and already I feel like I have more energy.
Just gotta get my sleep together… which is always a challenge.
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.