Ah, another beautiful day. Make a point of getting out in it.

sunflowerThe weather is amazing today. It’s not too hot, not too cold, and the skies are clear. The sun is rising over the hill behind my house, and I’ve got my music on. I’ll write for a little bit, then I need to do some day-job work.

We have a huge deadline tomorrow, and we’re still scrambling a little bit to get things in order. In fact, we won’t be able to get anything 100% in order by the time the “flip the switch” tomorrow, which makes a whole lot of people nervous, including me.

It’s pretty bad.

But, the job is going fine, otherwise. I’m not the only person under pressure or experiencing profound doubts about how things are done, so I have company. And I have a paycheck. I’ve never felt this disconnected from a job, before. The things I can change, I can afford to care about. All the rest of it… well, people make their own beds, and they have to lie in them.

I’m actually looking forward to getting some work done today — I do like the part of my job I’m doing this morning. I just don’t get much chance to do it, what with all the meetings and status reporting and presentations that need to be prepped. It feels like I spend more time talking about what I’m doing, than actually doing it.

But that’s something I can change. I can do what I please in the times between when people are hounding me for updates.  Including doing the work I love to do. Honestly, it’s fun — when I get to do it. So, I can both enjoy myself and take care of business.

It’s not so bad, really. It’s just a lot of work.

Fortunately, I can work from home when I need to, so that’s great. That saves me. Being able to lie down and take a nap, when I’m exhausted and can’t go on… that’s huge. And that frees up my energy to really focus on what matters to me the most, to do some deeper thinking, and really get ahead of things, before they pile up on me.

Given how much is going on in my job, each and every day, that’s a challenge. But that just forces me to get creative and come up with real options that I can work with, instead of being stuck in somebody else’s idea of a good time. If I’m behind, and I know it, and there’s anything at all I can do about it, I have only myself to thank for falling behind.

And that’s where I’m at, right now. Sorta kinda digging out from a self-imposed prison of t0-do items. I haven’t sunk enough time into everything I do, in a systematic way, and it’s taken a toll. So, on days like today, I can do something about that. And I shall. And why not enjoy myself, while I’m at it?

It’s a beautiful day, and I’m going to make the most of it.

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A good week – busy, and good

frog carrying books and papersLast week was a good one, I have to say. I took a break from social media for a while and read some books, for once. I also spent a fair amount of time taking care of business around the house. Cleaning up leftover mess from months gone by. Fixing up outside, taking care of my lawn, getting myself ready to tackle the garage and clean that out. I have a lot to do, and since it’s spring, it’s time to jump into action.

Or just get moving.

I also reconnected with some old childhood friends of mine, and it’s great to drift back into the sense I had when I was with them. When I was younger. When I didn’t fully understand my situation, what made me “tick”, etc. Relating to those people again with the perspectives I have about what I was dealing with, back then — a bunch of concussions that never got recognized or addressed, as well as the confusion and frustration and mixed-up state that came along with them — it’s much easier for me to relate to those people now, than it ever was, when I was a kid.

And that’s kind of cool. Because now I can cut myself a break, even forgive myself for being how I was. And I can cut those people a whole lot of slack for being “how they were”. Because in all honesty, I was so turned around, back then, I truly didn’t know how they were. I took a wild guess, and I guessed wrong.

But that’s all behind me. Because I understand. And I can forgive myself for a whole lot of things, now that I understand what was behind it. I can actually have compassion for myself and the person I was, back then, as well as others. And that’s the best thing of all.

Compassion makes a difference.

It’s important — and not only for the past, but for the present and future, as well. With my changed perceptions, my updated perspective, I can be free to move forward in life with a different way of thinking about things. I’m no longer “the loser who couldn’t figure anything out”. I’m “the resourceful, persistent person who never quit trying”. I’m not the former “waste of space”. I had as much right to exist as the next person, and I learned to contribute as best I could.

And I’ve been thinking a lot about contribution, lately. How important it is to really help make the world a better place by our choices, our words, our actions. I’m not talking about being some pie-in-the-sky lightweight who’s always spouting some sort of inspirational stuff. I’m talking about making the hard choices to keep positive, even in the face of adversity — to appreciate just how much everybody is dealing with, each and every day, and help them get through it all by staying positive and constructive.

We all have our struggles. That much is clear. And for me, staying stuck in my own difficulties is a sure recipe for misery. For myself, and for others. But when I get out of my own head and focus on others and look for ways to help, everything changes. For them, and for me.

That’s another thing that’s made this past week particularly good. I’ve been focusing on others, putting myself in others’ shoes, thinking about them and their situation, and doing my best to be supportive, even if I have no idea what’s causing someone to do the things they’re doing. That makes work so much easier — not because the job we’re doing is any less complicated, but because it gets the people stuff in order, and when you build from there, everything else finds a way to work itself out.

Oh, one other thing I found that’s helping — laughing, instead of cursing. Even if I don’t feel like laughing, I’ve been training myself to let out a little laugh, when I get frustrated or everything is completely messed up. Make no mistake… there’s a lot of stuff I’m dealing with that’s messed up. And it’s definitely curse-worthy. But if I make myself laugh just a little bit, that changes how things feel. And it lifts my mood considerably.

So, that’s good.

I plan to keep doing it — just embrace the absurdity of it all.

And now to get into this week. It’s spring vacation for a lot of my colleagues, this week, so it will be quiet. I’ve heard rumblings of political maneuverings that might swoop in and move me from one group to the next. Whatever happens, I’ll make the best of it. Whatever… I need a quiet week to just chill and get some work done. This should do the job.

Or it won’t.

Either way, I can always laugh about it.

There’s that.

Onward…

Time to head down the road again…

road with trees on either sideYesterday was a long day, for some reason. I went out to run some errands, then got caught up in traffic and spent more time than necessary at the grocery store. All the people shopping for dinner were a steady source of distraction, and by the end of my visit, I was worn out.

I also had to find a replacement remote, and I went to two different stores, but I had a hard time figuring out what was what… I couldn’t find the electronics aisle in one store, then I couldn’t find remote control that I liked in the other store.

So, it’s back to the drawing board. I’ll probably go out today, in a little bit, to an actual electronics store. There’s a “big box” one about 15 minutes from my place, and although I don’t like going in there, I’ll take one for the team.

I need to get something else at a nearby store, so the mall looks like it’s in my destiny, today. Or maybe not, because it’s Easter, and I’m really tired today.

I really need a walk. I’ve been cooped up inside for what feels like months. Actually, it has been months since I was free to just pick up and head down the road. Too much snow. Too much cold. Too many crazy drivers. But today, it’s quiet. Everybody’s either at church or their sleeping in before Easter dinner.

This would be my chance to pull on my walking gear and head out.

I think I’ll steer clear of the woods, though. My balance hasn’t been great, and I’m concerned about slipping and falling – especially since the snow melted so quickly and there are bound to be slick and slippery spots in the woods. I’ve already clunked my head, this morning — just a minor clunk, nothing to worry about. It was a wake-up call that my coordination isn’t great.

So, I have to make choices accordingly.

The main thing is that I keep going, keep progressing, and take care of everything that needs to be taken care of.

Onward.

Up again, down again, up again, down again

some days are heavier than others. some are not heavy at all

Lately, my life has been pretty … variable.

My mood has alternated between great(!) and meh and dismal… and then back again.

It’s all part of it, I suppose. Just life being life, work being work, family being family.

Steady on… Everything cycles around.

Everything.

“Down In a Hole” – Rediscovering Alice In Chains

volcano hole in the groundYesterday, I was wandering around the interwebs, and for some reason, I ended up listening to an old MTV Unplugged show featuring Alice In Chains. They used to be played on the radio all the time, when I was still listening to the radio, instead of listening online, and I remember well, singing along with “Rooster” and “Down In a Hole” and other songs I don’t know the name of.

And it felt great to listen to those songs again. For two reasons:

  1. I can completely relate. The songs really speak to me, especially on days like yesterday. It really felt like I was down in a hole, and that everything was conspiring against me. Those songs especially remind me of how intensely I used to relate to them about 10 years ago, and that old feeling is familiar and comforting.
  2. I realize just how far I’ve come in my recovery. Those songs used to mean so much to me… but now they’re more important to me as intermittent reminders, occasional reassurances. Something to keep me balanced and reminded that life has its ups and downs, and continues on, nonetheless.

I don’t think I’m going to go back to listening to Alice In Chains on a regular basis. I start to feel a little depressed, when I do that.

But it’s good to remember, they’re still there. And I can tune in to listen to them, anytime I need that.

And so my Tuesday begins.  Onward…

Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

Back in my own space again

laptop with blank notebook and pen on a desk
Today I move at my own pace – blank slate

I’m back in my home office again.

It’s been months, since I was in here regularly. I had been working downstairs in the dining room, where I have better wireless connectivity and I can move around the downstairs without disturbing my spouse.

But nowadays, I really need to get back into my office. My study. My refuge. Everything in this room is here because I want it to be. I need it. I value it. That’s not to say I don’t want and value what’s downstairs. I do. It’s just not all mine, and it’s shared space with not only my spouse but anybody else who comes over to the house.

Granted, there are not that many people who come by, anymore. I can’t deal with having a lot of people in my home. Not anymore. We used to have company over a lot. But in the past several years, that’s faded away. I’m too tired, by the end of each week, to deal with people. And when I do have extra social activities on the weekend, it really takes a lot out of me. I hate that it does, and I do plenty to offset it — like working on my stamina and pacing myself better during the week — but it’s still an issue.

A tired brain is a cranky brain. And when my brain is cranky, it’s not much fun to be around.

Truly.

And too many other people have found out. I’ve gone ballistic on some folks whose only crime was being in my house when I was too tired to interact with them. They were friends, and they considered me a friend. But now they don’t talk to me. Oh, well. So it goes. At times, my life is easier without having a lot of regular friends in it, to tell the truth. Does that sound sad? It’s not. I need my peace and quiet. I need my rest. There’s only so much of other people I can take, even on my best days.

That being said, I’d been able to work downstairs in the dining room, because we rarely use the room for eating, except when we have company.  We use it to store things — boxes we haven’t decided what to do with, yet, as well as other packing materials. Papers and mail that isn’t time-sensitive and just needs a place to “sit” till I figure out what to do with them all. Books. Books. More books. Things we’ve moved from other rooms, to make space for our everyday lives. And there’s room for me to set up a workspace at the dining room, which is exactly what I’d done over the winter. The dining room is warmer than my study in the fall and winter, in any case, so that’s part of why I moved my “operations” there.

But not having my own space has gotten to me. I need to close a door behind me and settle into my own frame of mind — the mentality that sets in when I’m in my own space. I have my books around me, my music, my artwork, my papers. It’s all here. All my fascinations from over the years. And all my neurology info. Especially my neuro info.

So, now I’ve moved back into my study, and I’m looking out the window at the bird feeder and the falling snow. We got more snow last night, and now the wind is up, so it’s cascading off the trees, so it looks like we’re having a blizzard. We’re not. That’s just the overnight snow being tossed by the breeze. But it looks pretty intense at times.

It’s Sunday. That’s good. I have a whole day to pretty much do as I please, and that’s a welcome change. It’s not that I’m going to indulge myself… it’s that I have a lot that I want to do, and not having other responsibilities driven by others’ needs is making it possible for me to make some headway.

Write some blog posts. Read some papers. Get the word out about brain injury recovery being both possible and probable. I’m on a mission. And having my own workspace makes it easier for me to focus on that.

So, yes. Onward.

Brain injury awareness doesn’t just work for March

brain injury infographicMarch is winding down, and Brain Injury Awareness Month (March) is disappearing into the rear view mirror.

Again.

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.

Well, that was interesting… good times, bad times, good lessons

winter frost tree downThis 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.

Just as it should be.

Onward.

Changing Our Minds About #BrainInjury #Recovery

change your mind about brain injury
Change your mind about brain injury

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.