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…

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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.

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.

Righted again

I’ve been home for a little over a week, and I finally got a full night’s sleep, last night. I’ve been working off of 2/3 of my usual “dose” since last Friday, and it doesn’t do me (or my work) any good.

Whenever I travel for work, for every 4 days I spend there, I lose an additional 8 days afterwards just to catch up. And I also lose a few days ahead of that, while I’m preparing and putting all the pieces in place to keep my (and my spouse’s) life going per normal.

Normal! Ha. That’s a good one.

Well, anyway, things are back to normal again. I got up after the sun was up, and I had my exercise and healthy breakfast. Now I’m organizing myself for the weekend, so I can catch up on the chores and activities I couldn’t do last weekend because of the fatigue and also competing activities.

I’m also looking for a new job that doesn’t involve travel. I’ve got a rich and full life, and I don’t need to be hauling my a** all over creation. Not after all these years of working as hard as I have. Surely, there are jobs that don’t require that.

Of course, the ones that do involve travel tend to pay better. But it’s all a tradeoff. And ultimately, if my quality of life takes a dive, is the money actually worth it? Not sure…

Fortunately, there are other options. I’m exploring them. And for the time being, as long as I can get decent rest and keep myself from getting too scattered, I’m in a good place.

I’m righted again. And now it’s time to do some yardwork.

It’s all an adventure.

Onward.

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.

2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain….

brain withi paint spattered on it and a grungy border

From the Give Back Give Back – TBI Self-Therapy Guide – which you can download by clicking this link, here’s the second point about how to fix your brain. It’s an important one, because it puts you in the driver’s seat of your own recovery. That’s huge.

2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain and get it to think through the things you are going to do.

  • Your BRAIN no longer does its job well enough on automatic pilot.

You may think it does, but it doesn’t. All those years your brain invested in learning how to do things… well, the things it learned about “the right way to do things” has changed. The connections and pathways that your brain was used to using to get from Point A to Point B… well, those old highways and byways may have been “washed out” by your TBI, so all the signals traveling through your brain need to find new ways to do their job.

  • Now, your MIND has to make sure it does its job properly, whenever you do anything in which the results are important.

You can’t just rely on your brain to be on autopilot. You have to use your MIND. And you have to stay engaged. You have to pay attention. The brain can do its job, but it needs to be watched — cared for — tended. And that’s the job of your mind.

  • Any time you need your actions or your words to have quality, your mind has to make sure that your brain produces quality at every step.

Your mind is in your control. Your brain … well, not so much. Some people make no distinction between brain and mind, but for our purposes here (and for Give Back purposes), we need to make that distinction. The brain is the organ, the result of a whole lot of physical and neurological processes. The mind is the result of the brain’s activity and your presence… of mind.

  • It’s as if your mind now has to be the boss.

Yep. It does. It has to run the show. You can’t rely “mindlessly” on your brain to just do its job as usual. Because the ways that it used to do things have altered. And that change is permanent. Does that mean you can’t create new ways and pathways for your brain to do things differently? NO.  That’s the point — it can change and learn and grow. But it’s used to doing things the same-old-same-old, and that’s not going to work for you anymore.

  • You need to be MINDFUL so that you can be an effective boss.

Give yourself a promotion. Make yourself the CEO of your own life. You’ve got to run things, now. Not just your autopilot brain, but your powerful mind, which learns and grows and changes constantly and acquires skill over time. Mindfulness, paying attention, properly managing your energy and frustrations… you’ve got a new job.

You can do it. You got this. Many, many other people have been through this and have come out on the other side in good shape. Follow this link to read more: Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series

TBI recovery (even for the so-called “mild” type) is an ongoing process which involves your whole self. Take heart. There is a way forward. I found my own way, and you can too.

Onward.

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

Getting the right information about #concussion

train tracks rounding a bend and disappearing
Who can say what lies ahead?

It never ceases to amaze me, how little is generally known about concussion / mild TBI. Either it’s dismissed, or it’s viewed with a combination of fear and horror. Just mentioning to someone that you’ve had one (or two, or — like me — 9) can seriously alter their perception of you.

I’ve had conversations with people who I thought would “get it”. But as soon as I mentioned my history of mild TBI, their manner changed from collegial to guarded. As though they were waiting for me to slip up or do something stupid.

Eh, well. Whatever. I can’t get too bent out of shape about it. After all, it’s largely not their fault. We just don’t have a lot of good information about concussion / mild TBI. Nor do we have stellar management practices. It’s either negligent, or it’s over-protective. And unless I’ve been under my rock too long (always a chance of that), I don’t believe there are widely recognized, standardized best practices for docs and patients, alike.

We’re getting there. But we’re not there yet.

That being said, I’m working on updating my series 10 Things I Wish Someone Told Me After My Concussion(s) I collected 10 posts in one place, and I also published it as an eBook, to give people more access to it. But looking at it last night, when I had some time to myself, I see I really need to both expand it, as well as create a more condensed, high-level version of it.

The point of the collection is to let people know they’re not alone – and to share with them things that really would have helped me, had I known about them sooner. When you hit your head hard enough to alter your consciousness, it can impact you heavily. It might not be obvious from the outside right away, and it may take a few hours or days or weeks (sometimes even months) for things to start to get weird, but something actually has changed inside your skull.

We need to know this. Not just from doctors when we think to consult with them. Not just from experts, who have all the domain expertise. But in the general population. That’s why I’m expanding the book into print — because I want to get it out to libraries, as well as to individuals. It’ll be on Amazon, just like the eBook is.

I’ll be updating this site, too, as I go along, adding more information to help clarify. This is important. People need to know. It can’t protect them from that first impact, but it might just help them deal with that — and possibly avoid the next impact that becomes even more likely when you’re already concussed.

Watch this space.

For this news … and more.

10 Things I Wish Someone Told Me After My Concussion(s)

Top 10 Things I Wish They'd Told Me After My Concussion(s)
Top 10 Things I Wish They’d Told Me After My Concussion(s)
Price: $2.99
Have you had a concussion? A mild TBI? If you’ve recently had a head injury, you’re not alone. Millions of Americans have a brain injury every year. Sports, falls, assaults, auto accidents, and more all contribute. To take care of yourself and get better, there’s a lot you need to know.
What can you expect? Why do you feel so weird? Why are you getting so angry? How do you take care of yourself? How long will it take for your symptoms to clear up? Will this fatigue ever end?
This “beginner’s guide to concussion” gives you an insider’s view of what it’s like, what you can expect, what you might experience, and why you feel the way you do. Written by a multiple mild TBI survivor with decades of recovery experience, “10 Things I Wish They’d Told Me After My Concussion(s)” fills in the blanks of this puzzling condition and talks about anger, fatigue, frustration, the neurological basis of your situation, and more. There is always more to learn with concussion. And this book is a place to start.