Not for the faint of heart

The path must be there somewhere

The path must be there somewhere

I’ve been thinking a lot about my recovery, lately. What I lost to TBI, what I’ve gotten back, and where I go from here.

Scratch that. Yes, I’ve been thinking a lot about it, but thinking is not the point.

Living is.

Looking back at where I was, just a few years ago, it amazes me that I was as functional as I was. I mean, even just five years ago, I was grappling with all kinds of crap like intense mood swings that would completely wreck my day, and a ton of money troubles — creditors calling me constantly, threatening to take me to court — and some of them succeeding.

I landed in court at least twice (maybe three times?) that I can remember, and I totally screwed up one of the appearances, where I didn’t realize I needed to go into the actual courtroom. Even though I was sitting right outside, they logged me as a did-not-appear, which didn’t do much for my case.

Oh well. That’s over now. Don’t plan to go back there again.

Anyway, everything was so turned around, and it was literally all I could do, to keep up. I was in constant reaction-mode, constantly pushing, constantly fighting, constantly going against a grain of one kind or another. I was off my moorings, cut loose from the life I’d once known, and I was dealing with my spouse’s illness, as well.

All this, while having no real sense of who I was, or what I was about. I was on auto-pilot, just hacking my way through the weeds. And there didn’t seem to be a clear path.

To anywhere.

Now things are different. Very, very different. And I’m coming out of the jungle with a clearer view of where to go. It’s like I can actually see a path in front of me. It’s not ideal, but it’s still a path.

That's more like it

That’s more like it

And I’m still walking. Running, now and then. I’m also making progress, each and every day. I just need to make sure I get enough rest and good food, to keep going. That means real food, not a handful of candy and junk food at 3:00 in the afternoon. That sh*t will do me in.

Anyway, life goes on. I’m putting some distance between my past and present, and that’s giving me some needed perspective. I was so caught up in just getting through, so turned around, so uncertain about how to live my life.

All the things that had seemed so familiar to me — the old ways of thinking and doing and being seemed to be smashed to smithereens. From the simplest of activities like brushing my teeth and coming my hair in the morning, to making breakfast, to what I did for work each day… all of it morphed into something different and unrecognizable.

And it was really hell.

I think the hardest thing was losing my innate skill with little simple things, like being able to hold things without having to think about it. Dropping stuff all the time did a number on my self-confidence, and I couldn’t figure out how to get it all back. I just felt so stupid, so dumb, so inept. The simplest things were challenges for me, and I didn’t understand why they were hard for me.

That just stressed me out, and stress biochemistry does a number on your ability to learn.

More stress meant it took longer for me to re-learn, to re-train my body and brain, and it just prolonged everything. I didn’t understand the nature of my problems. All I could see was that I had those problems — or rather, they had me — and there didn’t seem to be any escaping it.

Now I know better, of course, but it’s been a long, hard road. And frankly, it’s sucked.

It was lonely. It still is lonely. Because nobody seems to understand what it’s like to actually lose your Sense-Of-Self. What it does to you. What it does to the people around you. How much it takes out of you, day in and day out, to have to reconstruct your life. I’ve rebuilt a huge amount of aspects of my life as I once knew it, but to be honest, I still know that I’m not the same person I used to be. And while I’m “close enough”, still…

I don’t feel the same way as I used to — about my life, about living my life, about, well, most things. And that loss of Self, that loss of the Sense of My Self, has been the hardest thing to overcome. I know how to rebuild. I know what it takes. But it’s still not easy, and most days, I’d rather not have to.

There’s a reason people don’t readily jump into finding out what it’s like to recover from a TBI. Or Concussion. Or stroke. Or brain aneurism. Or encephalitis. It scares the bejesus out of them to think that the brain can change as dramatically as that, and they just don’t want to think about it.

Some of us have to do this work. But it’s not for the faint of heart.

Seldom recognized – the impact of physical issues after mild TBI

It starts in the brain and moves from there…

I’ve been working on final edits of a book I started writing in 2008-2009, about how sensory processing difficulties affect one’s frame of mind and psychological state. It’s called “The Deepest Day” and it draws from both my own experiences with light, noise and touch sensitivities, as well as vestibular (balance) issues, along with a fair amount of research I did when I was trying to understand what was going on with me… and why I felt so terrible all the time.

Sensory processing issues (or Sensory Processing Disorder / SPD) can have a lot of sources. And it’s often mixed up with autism, ADHD, and other conditions. When I first came across it, I felt like a door had been thrown wide open to a shadowy part of my life. Suddenly, so much was clear.  I did write a bunch back of posts in 2008, 2009, 2010 about sensory issues, and I’ve written a lot more about particular issues, but it all got too overwhelming to think about. I got turned around by all the talk about what it’s all about, the politics of it, the healthcare territorial disputes, and so forth, and I had to take a break and focus on other things. So I stepped away from the research and focused on my daily life. Plus, the proverbial ship of my life was running into some proverbial shoals, so I had to focus on what was in front of me, day to day.

Still, knowing one of the main sources of my distress was hugely helpful, and it made it possible for me to take corrective action that — no joke — has changed my life dramatically for the better.

I’m inclined to believe that my sensitivities are related to all the times I’ve gotten clunked on the head. I have had a number of mild traumatic brain injuries over the course of my life, starting when I was a young rough-and-tumble kid, and from what I read about TBI, sensory processing difficulties often go hand-in-hand with TBI. When I read the “laundry list” of possible symptoms/issues following TBI, all the physical issues read like a narrative of my life. For as long as I can remember, I’ve had sensitivities to noise and light and touch. I’ve also had severe balance issues for a long, long time. I never really understood what was happening with me when I was a kid — or as an adult. All I knew was, the whole world seemed like a hostile, hurtful place.

And for me, it was. When sound hurts your ears and light hurts your eyes — not always to the same degree, and not always in a predictable way — and it hurts when people touch you, the world turns into an ordeal to be survived. And that colored every aspect of my relationships to life and the people in my life.

Looking back now, I realize that people weren’t trying to harm me. They were just doing what people did. And they had no idea how much it was hurting me. If they had, they would not have done it, I’m sure. A lot of people have loved me over the course of my life — they’ve really cared for me and tried to show it in kind and caring ways. But those ways hurt me, because of my sensitivities. And because I didn’t understand the nature of my issues — nor did I know how to address them — every interaction with other people was a struggle to be survived.

When I first wrote The Deepest Day in 2009, I had to walk away from the book. Seeing in words what a usual day in the life could be like for me… it was just too much. It’s one thing to deal with constant pain and discomfort, as well as balance issues. When you’re in the midst of it, it’s just there. It’s just how things are. But when I stepped away from it and looked at everything as an observer, the sheer magnitude of my issues was simply overwhelming. And I had to stop thinking about it.

I tried to write the book in different “voices” — as both a man and a woman. I wrote it as a first-person masculine “I” speaking. Then I changed it to a masculine third-person “he/him” narrative. Then, after studying a number of different books and papers and reading different accounts, it occurred to me that the way people talk about sensory processing disorders seems to differ between men and women. The way people talked about sensitivities with women seemed in some ways to be more alarmist, yet also more dismissive. I have a big problem with the differences in quality of healthcare for men and women, and I believe that starts with how we conceptualize “men” and “women”. So, I rewrote the book in a female first-person voice… then changed it to a third-person “she/her” narrative.

I also experimented with second-person “you” storytelling, putting the reader directly in the shoes of the main character. But that felt too strained. So, now I’m rewriting it in a neutral gender (very similar to this blog), so that readers can make the main character any gender they want, and experience the book in the way that makes the most sense to them.

Anyway, gender and healthcare aside, the book is finishing up nicely, and looking closer now, I can see how close I was to being done, back in 2009 before I stepped away. It was just too much for me, I guess. And I also needed to do something about those issues.

I have done something about the issues, since then, and it’s made all the difference in the world. I will be the first (and possibly only) person to tell you in writing and for all the world to see that when it comes to TBI, sensory processing issues can be a massively complicating issue which completely mess with your head in ways that can easily be mistaken for psychological issues. In fact, sensory issues do produce psychological issues, but in a way that is hidden and hard to diagnose by the folks who are looking at your state of mind.

Healthcare providers and psychologists just don’t seem to be trained to deal with sensory processing issues, and like me, a lot of people can end up going down psycho-drama ratholes, looking for emotional or relational sources of psychological disorders which in fact have a physiological basis. That whole mind-body thing…

And when you are working with a psychologist who has a poor relationship with their own body… then things can really get clouded.

Because chances are, they’ve trained themself out of even remotely considering their physiology, when it comes to their psychology. Dealing with their body is not “safe territory” so they avoid it because their own fears and anxieties keep them from conceptualizing clearly and cleanly.

That doesn’t make our physical experience any less impactful. If anything, it just heightens it. And The Deepest Day really brings that home for me. Just thinking back to how off balance I was, how nauseated I was all time time, how turned around and dizzy and in pain I was… and then you throw in the light and noise sensitivity on top of it, and whammo — you’ve got yourself a potent recipe for a messed-up head.

Personally, think that TBI recoveries are impeded by physiological issues more often than most folks can guess. Here’s a “mind map” I created of the issues, back in 2008. It’s still relevant today.

How one thing leads to another

How one thing leads to another – click the image above to see the whole map

Those physical problems add stress to our systems, and when stress is in the mix, it makes it more difficult to learn. TBI recovery is all about learning and re-learning how to live your life effectively, and if your ability to learn is impeded in any way by environmental stress, well then, you’ve got yourself a prolonged timeline for recovery — if you have recovery at all.

That’s what was happening to me in the years after my fall in 2004. I was having more and more problems that were more and more stressful, and although my neuropsych says that my actual functional capabilities were not completely wrecked, and my difficulties arose from the way I was conceptualizing and relating to my injury and life situation (I’ll rant about that later), the stresses around the experience were adding up in ways that made things increasingly worse over time.

The impact of my injury was disproportionate to my actual injury, and after searching high and low like a possessed person for years, I can tell you exactly why that was, how it happened, and how I dealt with it all to get where I am today — happier, healthier (for the most part), and more functional than ever before in my life.

The Deepest Day is a start to an extended conversation we all need to have about the real causes of difficulties after concussion/mild traumatic brain injury. Or any brain injury, for that matter. Stroke. Aneurism. Encephalitis. Whatever. It’s all related, it all directly impacts our experience as human beings, and our Sense-Of-Self. Clinically, our injuries may not be noticeably impactful. In terms of scientific measurement, they may not even register. But something is happening, and that something really matters. For us, for the ones in our lives, and everyone who is even peripherally impacted by our difficulties (including the countries we pay our taxes to).

The longer we ignore or downplay this, the longer we make it possible for people to suffer. The more we deny the connections, the more we guarantee that this problem will persist — for us all.

Dealing with TBI Burnout – Part III

Like this

All the adjusting and adapting… It can work me into a frenzy.

And it often puts me there long before I realize what’s going on.

Eventually, I figure it out.  And then, once I realize what is going on, I have to do something about it.

Stop. Just stop. Shut myself off from the world. Just take care of the basics.

Stop. Everything. Else.

It often takes me a day or two, to get my bearings. I tend to get down on myself because I’ve succumbed, once again, to the crazy-busy-ness, and I have to spend a little time looking for what put me into that frame of mind… tiredness. Weariness. Exhaustion.

And I have to take a break… which isn’t an un-welcome change, because sometimes there’s nothing I like more than just pitching it all over the fence and running in the other direction. There’s always the danger that I’ll overdo the “taking a break” thing, and I’ll lose all my momentum from before and end up more steps back than I’d like to be.

Finding a balance between DO-ing and BE-ing is not easy.

But it’s got to be done.

And so I take a break.

And rest.

And just enjoy myself.

Go do something else for a while.

And get right with myself all over again.

Dealing with TBI Burnout – Part II

What you get, vs. what you expect

See, when your brain suddenly works differently than it did before, it can be incredibly stressful. You have to stay on your toes, because so much can — and will — go wrong… or at least differently from what you intend and expect.

You start to say something, and it comes out wrong. Not only does it come out wrong, but it comes out in the “wrong” sort of way that puts people off — pisses them off — or makes them wonder WTF is wrong with you. Sometimes you don’t even understand that what you’ve said is wrong, until later — when it’s too late to take it back or correct people’s misunderstandings or explain yourself.

You start to do something — a simple little thing like picking up a spoon to stir your coffee — but your coordination is off and you drop the spoon, clattering loudly on the kitchen floor. The sudden loud sound is like a gunshot in your head, and not only have you messed up a very, very simple thing (how hard can it be to pick up a spoon and stir your coffee?), but you’ve also hurt your ears… And now you have to bend over to pick up the spoon, which is no easy feat, considering that you’re off balance and your coordination is off.

If you’re lucky, you’ll be able to bend down and stand up again without falling and hitting your head.

You get yourself ready for work and you go out into the day, but at every step along the way, things turn out differently than you planned and expected, and you end up frustrated and backpedaling and tied up in one do-over after another.

It’s exhausting, to be constantly adapting and adjusting. Always paying attention, always focusing, always double-checking to make sure you haven’t screwed something up or done something you didn’t intend. The worst is when you do things that others take the wrong way — they feel hurt by what you say or do, and then they lash out… because they think you’ve done it to them on purpose. Then you have to defend yourself, which sometimes means you have to get aggressive, because people are coming after you with both guns blazing — over a misunderstanding.

Over your brain doing something quite different from what you wanted it to do.

You do what you have to do, but it feels terrible. All the while you want to say,

“Wait – wait – I didn’t mean it. You’re misunderstanding me. I didn’t mean to say or do what I said and did. I know better. I really do. I intended better. I really did. But my brain isn’t exactly my best friend today and it’s messing with both you and me.”

And all the while, the rest of the world thinks that you’re either psychologically disrupted, or you’re doing things on purpose, or you’re malicious, or you’re an a$$hole, or you just don’t “get it”.

Nobody gets it. And sadly, with TBI, a lot of times that includes you.

Until it’s too late.

And you can’t take back what you said or did.

And you’re not even sure anymore about what you said and did.

And everybody’s pissed off at you.

Again.

So, you go on. You keep going. You get some sleep and try to eat right, you try to catch up with yourself. You just do whatever you can do.

You keep going, as best you can.

Onward.

Good-bye, precious time…

Time for a walk

We “lost” an hour today. It’s my least favorite experience in the world, almost. I need my hours,and I need my sleep, and when the clock “springs forward”and deprives me of a precious hour, that doesn’t make me happy.

Oh, well.You’d think after all this time, I’d be used to it. I’ve had 40-some opportunities to practice.

But it’s still no easier than it was last year.

Or is it? Actually, I think it is. I’ve accepted the fact of the experience. I’m not fighting it. I’m just kind of resigned to the whole thing — which seems to be where my head is at, these days — resignation and acceptance of basic unpleasant facts of life and the urge to just hole up somewhere and putter around my house, hammering the odd nail and painting the odd wall.

Back beforem y fall in2004,I was totally into fixing up my house. It came in move-in ready condition, so not a lot had to be done, but there were still somethings that needed to be tended to. The insulation in the attic had to be replaced. I did that. The walk-up to the attic needed a door built to keep the warm air downstairs and the cold air in the attic. I did that. The basement needed shelves and organization, and there were some things around the outside of the house that needed fixing. I did that, too. It was a big part of my life and who I believed myself to be.

A homeowner.

A weekend construction/remodel warrior.

I was really proud of that, and I dove into being a part of the community around me, joining a board in town and chatting with the neighbors while doing yard work.

After I fell, all that went away, and I disappeared into a haze of confusion and anxiety. I couldn’t interact with people, I couldn’t understand what they were saying to me, I couldn’t remember what we were talking about. And I couldn’t figure out what to fix on the house. So, things went slowly south… which brings me to where I am now, fixing things that I let go for the past 10 years or so.

Anyway, now I’m back, and I’m feeling much more like the person I want to be. I’m tired a lot, and I don’t have the same kind of spark around it, that I used to, but at least that part of me is back. And it’s good.

I just wish it hadn’t taken so long to come around.

But I guess that’s just how much time it takes, sometimes. And frankly, I’m lucky that I’ve come around at all. Make no mistake — I have worked my ass off, and I have made recovery from TBI a top priority in my life, pushing so much else out of the way. So, it’s not all luck. But in some cases — like the fact that I live within an hour’s drive (on a good day) of a major city with top neuropsychological care — I did get lucky.

What would I have done, had I NOT been near a city? What would I have done, had I NOT seen this neuropsych for all these years? I would have started this blog, anyway, and who’s to say I wouldn’t have come just as far? Having someone to talk to, who knows about TBI and its after-effects has certainly been helpful. At the same time, there’s the internet, and there’s Give Back with their Give Back – TBI Self-Therapy Guide which really got me going in the right direction. So, who can say?

All I know is, it feels like it’s been way too long for me… and I’m more eager to get back, than I’ve got energy for. It takes time — it takes a lot of time — to get on the good foot again, and it can be terribly frustrating.

Funny, things didn’t used to feel this difficult, way back when.

Because they weren’t. Now, it seems as though everything is harder. And I guess it is. Oh, well.

I really need to get out of the house. I worked indoors all day yesterday, and I’ve been cooped up at work at a desk, head-down, doing crap that’s piled up because people have left the company, or are leaving, or don’t feel like doing their job because their friends are going away. Sigh.

I need a break from the compulsive busy-ness (I may write a little rant later about bosses expecting their direct reports to be just as neurotic as they are… or I may not). I need to take a long walk.

Finish my coffee.

Put my coat on.

Hit the back roads, taking whatever time I can.

Onward.

Still more cleanup

Have brush, will travel

Today was painting day. I have had some leaks from my roof, and all the upstairs rooms have leak stains on them. Some worse than others. My spouse’s bedroom is the worst (we have had separate rooms for a number of years now, which lets us both sleep without being interrupted). They have been “camped out” on the living room couch for over a week, till things dry out enough for me to paint — which is this weekend.

I’m really hoping this works. The roof is going to need some patching soon, but we don’t have the money to do it just yet. The new (to us) car wiped out our savings, so it’s going to be a number of months before we’re in a position to do anything more.  At least I have a job. That’s something.

It’s a lot, actually.

I really need to do my taxes this weekend. I should be getting at least some refund. That will be something.

And none too soon. There are a number of things that need to be done with the house that are directly related to me being sidelined for nearly ten years after my TBI in 2004. We moved into the house in 2002, and I fell two years later, really screwing up my head — and whole life. I had things really well planned out, before my fall — I had shares of stock in the company where I worked, and they were maturing at a rate that would have let me pay off the house, when all was said and done. I was on track to collect my money in 2006, and then either wipe out the mortgage or pay down a big chunk of it, refinance at a much more attractive rate, and then invest the balance — or do whatever the hell I wanted to do. Travel. See the world. Take a break from the rat race.

Whatever I wanted to do.

But then I fell. And all that went away. It would have been nice if I’d had some sort of insurance to cover me. Actually, I did. But I was so impaired and screwed up, I didn’t understand what was going on with me enough to ask for help. And by the time I figured everything out, the damage was done.

And my good job was gone, my marriage was on the rocks, my shares were evaporated, much of my money was gone, and I was sh*t outa luck.

So it goes with TBI. Nobody understands it, least of all the person who sustained one. And everyone just stands around, scratching their heads, wondering why the hell things are so screwed up. It doesn’t make sense. None of it makes sense.

Well, anyway, I’m back on track now. Money’s an issue, but what else is new? At least I have my job and an income, and I still have my house and my marriage. That’s a lot. I’m working through all the issues I have had to stare down over the years — more or less on my own, thanks to nobody (and I mean nobody) understanding the degree to which I was struggling in silence. Even my neuropsych. Especially my neuropsych, who was “blinded by science” and what they thought were my real test scores.

Oh, well. So it goes. No one is immune, really, when a person can’t articulate effectively what’s really, truly going on with them. The only real fault I can find, is that they don’t listen very well. They think they have things all figured out. Huh.

In a way, though, it’s been fine, because I’m not sure I really wanted someone to be overly involved with me. I’ve been pretty much fine working through things on my own, with someone to check in with on a regular basis. I knew they were off track a bunch of times, but I didn’t say anything, partly because I didn’t want to get into it, I didn’t feel like my thoughts would be well organized enough to make any sense, and because I would just get really bent out of shape, when I tried to sort things out with them.

And they were so convinced that I just had the wrong philosophy about my state of mind/brain…

I didn’t feel like letting them down.

Anyway, for the ways that they’ve helped me, it’s been good. They just haven’t helped me quite the way they think they have.

Oh, well. Wouldn’t be the first time someone was completely wrong about me.

Anyway, it’s been a long day. The painting took 3x as long as I expected, and it wiped me out. Tomorrow I will have plenty of time by myself, because my spouse is meeting up with some friends for a while tomorrow afternoon. I’m really looking forward to the time alone. I have a lot to do — plus, another coat of paint to put on the ceiling — so it will be good to have the place to myself.

And have some room to think…. especially about the whole Sense-of-Self issue. It’s been on my mind, and I’ve got some more ideas brewing… especially now that I’m coming out of my functional fog and dealing with all these house issues. It’s been a long time since I felt like myself with regard to my domestic responsibilities. It’s coming back now, and that feels pretty good.

Onward.

The slow return to normal – and beyond

Kind of what it feels like

So, the upheaval over the accident a week ago has begun to settle down. I truly cannot imagine a worse time for life to be disrupted. It’s been a roller coaster of tears and anger and frustration and confusion, with some pretty intense extremes.

I really don’t have time for this sh*t.

I’m not being selfish and insensitive. I really feel for my spouse and all they are going through. It was a really traumatic experience, and I totally understand the reasons for the tears and the anger and all the emotional upheaval. I truly do understand. And I’m there for them to support them as they heal. And I have to deal with my own emotional stuff, too.

The thing is, life goes on, and I have a lot going on with me, just to keep the ship sailing in the right direction. I have to keep functional at work. And I have to finish my own personal projects which are a way for me to A) earn some extra money now, and B) set me up for future income in the years to come, when I cannot do this 9-5 work thing anymore.

I’m feeling less and less capable of dealing with the workaday world, each day, and I know I need a change. I’m not happy with how my brain functions at work – I’m forgetful and distracted and I am not functioning at the level I want to be at. I feel so marginal. I think it’s a combination of brain injury stuff and motivation and the general environment. When you’re dealing with TBI, you have to put in a lot of extra effort and find the “special sauce” that keeps you actively engaged in your life. Then things can go relatively smoothly (on a good day).

But if you take away the motivation and the joy, the sense of purpose and connection, everything gets harder. A lot harder. People at work are very nice, and I’ve had worse jobs, but they’re cliquish and petty and we have very, very little in common.

It becomes more obvious to me, every day, that I cannot continue to make a living, doing what I do the way I do it now. I am wearing so thin, it’s a challenge just to keep my head in the game and show up 100% each day. I really friggin’ hate the 9-5 scene, with the cubicles, the pettiness, being stuck inside all the time, and being in an artificial environment. It also makes me nuts that the people running the show don’t seem to be interested in actually running the business for profit, so when they come up short, people get cut, and it leaves me feeling quite vulnerable and exposed.

That will never do. Someone else who can’t run their business is going to dictate how my life develops? Oh, I don’t think so. It’s really wearing thin with me, and I need to get out. I’ve started counting down to when I can leave — not sure when that is, but I’ve got this countdown going in my head.

So I’ve been putting a lot of my time and energy into developing concepts and projects that can get me out of that environment. I continue to get up each day and go through the process of living my life and building the pieces I need in place for myself in the future. I’m very clear about my ongoing direction — there’s a lot of writing and publishing and “information marketing” in the cards for me — and I’m very clear about how to get there. Plus, there are a lot of resources online to help me get where I am going. So, I’m fairly confident these ideas will take flight.

It just takes a lot of work and a lot of focus. Every extra hour I have, when I’m not eating or sleeping or trying to relax for just a few hours, gets funnelled into my Great Escape. And having this car accident intrude on my focus and having to process all the drama around this event has really been sucking the life out of my activities.

I’m not feeling like I have the wherewithal to go through this whole post-traumatic process with my spouse, and deal with it along with the rest of my life. It was traumatic for me, too, because whatever happens to my spouse, happens to me, and it was pretty intense, being at the hospital and not knowing what the hell was going on. And the car being wrecked… that’s not so great, either. Working through it all… it takes time, and time is something I just don’t have much of.

The thing is, in the back of my mind, I am absolutely certain that things are going to turn around for us. My personal projects are solid and valuable, and I know a number of businesses which have a real need for them. It’s only a matter of time, till I can break free of where I’m at.

It’s the getting there that takes so much time and energy. So, I’m just keeping steady… slowly returning to normal… sitting through the tears and anger and fear and anxiety… looking for every opportunity to change and improve, picking and choosing how I spend my time.

I’m also continuing to grow and expand and develop. Getting new ideas. Following through on them. Testing and seeing what works and what doesn’t, and just staying steady. There’s none of that old haphazard approach, where I would just throw something out there and hope for the best. I’ve got plans in place, and it makes all the difference in the world.

And so it goes. I have to keep current with my sleep, as well as my nutrition. I need to keep on with the everyday, as well as reach beyond to what’s yet to come. I’m feeling really positive about the direction I’m taking.

I just need to get through the fallout from this accident in one piece.

Onward.

“Just breathe” is sometimes easier said than done

Okay, now that I have opened up the Pandora’s box on this chronic pain and have started paying attention to my muscles when they move, I’m realizing that one of the reasons I don’t always breathe evenly, is because it hurts to breathe.

How unfortunate.

The simple act of filling my lungs causes my shoulders to lift, which hurts.

It ties into my neck, which also starts to hurt.

And my ribs expand, which also is painful.

Good grief.

Oh, well. I’ve been pretty active, physically, which has something to do with it. I’ve really been pushing myself, lately, lifting heavy weights and doing movements I haven’t done in a long time. I feel much better when I lift heavy weights. I find it very soothing.

At the same time, thought, I tend to be physically active a lot – especially in the winter, when I try to get out and get active as much as possible. I actually do better in the winter, since I can warm up — while in summer I can’t always cool down.

So, I’ve been pushing my body, exercising muscles a lot, and all the extra lactic acid along with the micro-tears in my muscle tissue… well, it’s adding up to a whole lot of pain. Especially when I breathe.

So, I need to really work on that. It’s hard to relax, when I’m not breathing regularly, but my body instinctively tenses up and avoids the pain that comes with deep breathing.

You see my quandary.

Oh, screw it. I’m going to eat some dinner, have some more Advil, take a long hot shower, and crash. I’m pretty wiped out, so I should be able to sleep reasonably well. And when I sleep, I’ll be breathing regularly, so my body will be able to settle back into a rhythm.

Here’s hoping.

What do I do with all this pain…?

There’s lesson in there somewhere

I started a new exercise discipline yesterday. Basically, it’s about re-training myself to move. I have a lot of pain and mobility issues, which I usually push right through. But lately, it’s been worse. Life goes on and doesn’t wait for me to get out of pain before it sends things my way. I have had a lot of work to do around the house and yard, lately, as well as helping my elderly neighbors with some upkeep their homes. Lifting and pulling and hauling… it’s been a lot, and it’s not going away soon.

So, yesterday while I was surfing around the web in the morning (before going out to do hard physical work for 3 hours) I came across an approach that addresses the underlying problems with physical pain — basically, the body not moving properly. We can get used to compensating for injuries and change the way we move, and in the process, our muscles get used to doing things they’re not really built to do. And we can get torqued and turned around and stressed in ways that really shouldn’t be.

I’ve had a lot of injuries over the course of my life — head injuries just part of them. I never broke any major bones when I was a kid, but I fell a lot and turned and twisted ankles and joints, jammed fingers and toes, and generally got all twisted up and wrung out. I was very active — and I had crappy balance — so if you put 2 and 2 together, you get a lot of slips and falls and injuries.

I was also on high alert a lot as a kid. I couldn’t hear properly, couldn’t make out what people were saying to me, and I had to really listen hard, to keep up. Nobody realized this, so I had to just deal with it myself. I also had a lot of attention problems, light and noise sensitivity and sensitivity to touch, so I felt like I was always being beaten. Someone would just touch my arm, and it would feel like they were hitting me. It was nobody’s fault, that’s just how it was. My parents were kind of rough with me at times, but even if they’d been the most caring and patient and sensitive people in the world, it still would have felt like they were beating me.

So, there’s that. I still have issues with being sensitive to touch.  I try not to think about it, because it really gets to me — and it’s worse when I’m tired, which is when I tend to get more emotional… so I really try to not think about it.

The net result of all of this, is that I’ve developed ways of moving that really compensate for those things. I’ve been on the defensive for a long, long time — avoiding making contact with people, avoiding people who are demonstrative (especially women), and just keeping to myself, because it’s so much less painful to be away from people. It’s heaven, actually. But outside my solitary heaven, there’s a world I need to move through, and I’d like to do something about all this physical pain I’m in.

So, I started doing these exercises, which are slow and controlled and involve a lot of resting and releasing tension. It feels great, when it kicks in. The thing is, it reminds me of how much pain I’m in, and it shows me how far I have to go, to really get moving properly again. My movements can be very jerky and clumsy, when I’m moving slowly — this new program says that will change as my brain is retrained to move. For starters, though, it’s a little disheartening.

But at least I have a place to start.

It’s also oddly emotional. I’ve been getting really upset over little nothings, this morning. Fortunately, I am by myself, so no one needs to be hassled by my mood swings. I’m just letting the emotions come up and then move on.

It all passes. That’s the one thing I’ve learned through all this — emotional volatility can be so extreme — and so quick. It doesn’t make sense to stay stuck in the emotional stuff and make more of it than need be. I just have to breathe and stay calm and let things just be… then reset my attention to something positive, and move on.

Physical pain is an interesting phenomenon. It can be so emotional (I’m not a fan of that), and it can be so pervasive and inescapable. I’ve been living with inescapable pain for nearly 50 years, and it’s no friggin’ fun. It’s taught me an awful lot, and it’s also altered my life in significant ways. I know what things will improve it, and I know what makes it worse.

So, I’m doing what makes it better. And I’ve got this new exercise routine that looks promising. I just need to do it — regularly and consistently. That is the best way to make progress.

Learning with all your senses

I just got a tip from headinjurytalk.com about a new study that’s out about how movement and images can help with learning a new language – read about it here: http://neurosciencenews.com/vocabulary-learning-sensory-perception-1742/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+neuroscience-rss-feeds-neuroscience-news+%28Neuroscience+News+Updates%29

What interests me is not so much the foreign language thing (thought I wouldn’t mind brushing up on some of my high school skills), but the overall learning implications.

As I’ve said before, TBI recovery is all about learning. You need to re-train your brain to do things differently. You need to re-train your mind and your body to handle things better. TBI recovery is very much a learning-oriented phenomenon, so anything that helps you learn, is a good thing.

I think that the foreign language orientation of this study is also interesting, because after TBI, you can literally feel like you’re living in a foreign country. And sometimes you can’t make sense of what people are saying to you. That happened to me after a couple of TBIs I had in the past. Suddenly, nothing that anyone was saying, was making any sense.

At all.

It was like I was watching a movie with missing frames, or listening to a radio station with poor reception, or watching a video that had to keep buffering. Nothing was flowing well, and I couldn’t understand what people were saying to me.

So, movement and sensory input helps people learn and translate a foreign language. And movement and sensory input have been really important for my own recovery, though perhaps for different reasons. I use the same principles in my TBI recovery that parents use with their small kids, trying to have as rich an environment as possible, with cognitive challenges punctuating my day… along with rest… I try to get plenty of rest.

I want to give my brain plenty to play with, including music and interesting videos to watch and interesting papers and books to read. I got myself a tablet, and I read books on it — I’ve heard that the lighted screen actually helps the brain to process information better, and that seems to be the case with me. And of course, I need my exercise. Whether or not it’s related to what I’m learning, exercise is still vital to my recovery. You need oxygen to feed your cells and your brain. Balanced breathing. Stretching. (Which, by the way, has resolved my recent crazy balance issues that were making my daily life unsafe.)

It’s all connected, and it’s always nice to see new research coming out that confirms that for the scientific community.