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.

Post 1978 – the year things started to turn around

Remember this? If not, you didn’t miss much. But my friends and I used to pile into somebody’s parents’ Pacer and drive around, eventually ending up at Pizza Hut to eat thick crust pizza and play Pacman till we ran out of quarters.

In honor of the number of posts coinciding with the calendar years (I’m up to 1978), now and then I’ll be writing about what life was like in the years that correspond with the post number. I’ll do some retrospectives, as well, but where I can correlate the years with past TBIs I’ve had, I’ll be writing about my injuries then.

In 1978, I was 12… then 13 years old, in 7th and 8th grades. My family had settled into the house where my parents still life, after relocating twice in the space of a few years. I was pretty much out of my element, but still carrying on as though I had it all together. At the place we lived for two years prior to our last move, I had sustained a mild TBI while playing at recess one day, and after that, I stopped functioning well. I withdrew into a shell — everything around me was overwhelming and confusing. My grades plummeted. I cut myself off from people socially, and in every sense, I was having a hard time. The lights were too bright, the noises were too loud, I had trouble understanding what people were saying to me, and I was tired and anxious a lot.

It was all just too much for me.

Nobody realized what was going on with me. Nobody knew how many problems I was having, because I wasn’t allowed to have the kinds of problems I was having. My parents and everyone around me basically denied that there was more going on with me than “character issues”, and I wasn’t allowed to be anything other than “normal”. I was expected to continue to play, to be social, to interact with other kids whose normal physical contact during games hurt me like they were pounding on me, to go outside in the blinding sun, and to be involved in all the activities that others did.

And by all means, I was NOT supposed to “sit it out” — “it” being anything. I was supposed to be involved, connected, social. Good grief.

The idea that my brain wasn’t processing things as well as it might have, and that I needed time and patience to put things together, was as foreign to everyone then, as any idea could be. As long as I was breathing and conscious, I was expected to step up and perform. No excuses. No exceptions. And so I did. I dove in and played along, even though things were not clicking as well as they might have.

The problem was, I had a bit of an impulse control issue. I said and did things that I really shouldn’t have. Mean things. Unkind things. Cruel things, even. And when I said and did some pretty sh*tty things to one of the new neighbor kids in the summer before 12th grade, I paid for it in my 7th grade year.

Turns out, the neighbor kids had friends — as in, a gang. And they were all bigger than me. And they were pissed. I was very small for my age, up until the summer I turned 13, so I was easy to push around. And all the bigger kids — a year ahead of me in school — weren’t afraid to do just that.

So, I spent my 7th grade year (1977-1978) in hiding, disappearing into corners and ducking into bathroom stalls, when I saw that gang coming. Needless to say, I didn’t make a lot of friends that year. There were some kids who reached out to me, but that was an awkward school year anyway, and I wasn’t up to it. Still adjusting. Still figuring out how to live my life without getting my ass kicked.

I got a skateboard, then fell off it because my balance was terrible, and I ended up in my Dad’s workshop, learning how trucks are put together. I grew my hair long and spent a lot of time in the woods. I read some, but I didn’t really understand what I was reading, so I made up my own stories in my head and I acted them out in solo live-action role playing scenarios. I was alone, and I liked it that way.

The summer of 1978, things changed dramatically. I started to grow. Nobody else in my family did it quite like I did, but by the time I was in 8th grade, I was 5 inches taller. I got my hair cut, I became more coordinated, and I found peace in my own head — at the top of trees I climbed to get away from it all.

I found my places where I could go to get away from everything, and when I went back to school in the fall, the bullies were gone. They were a year ahead of me, and they had gone on to high school. So, I was free to come and go and move about as I pleased.

8th grade was the year I started getting friends. Everybody at my school was very social, very community minded. And even though I tried to keep to myself, people pulled me into their groups to talk to them, to interact with them. Everybody wanted everyone else to be part of one group or another. Loners were not allowed, which I suppose is sometimes for the best.

I tried getting involved in sports, but organized sports with coaches and drills and regular practices had no appeal for me. It was too structured. Too demanding. I wanted to just flow… and to be good at what I did. I wasn’t very good at the team sports that were offered, especially basketball, which was way too confusing for me. I just couldn’t figure that one out.

But otherwise, things started to loosen up. I don’t have a lot of memories of my 8th grade year, and I was still keeping to myself for the most part. I discovered I had a quick wit and was a bit of a smart aleck, and while the teachers weren’t fond of that, my classmates were. I also discovered that I got along with everyone — from jocks to “brains” to “(pot)heads” to regular everyday folks who didn’t do anything out of the ordinary, but had jobs outside of school or were working towards their dreams.

I also became more involved at the church my parents attended. I was in a strange situation at church, because there was a really active youth program, but I was in between two “bubbles” of age groups. Rather than hold me back with the younger kids, my parents asked if I could be included with the older kids. I was still in 8th grade, but I could hang out with the high school kids. It really brought me along — and in an environment that was safe and respectful and principled. The other kids really took me in and made me feel welcome, and I learned a lot about how to interact with “normal” people just by being around them.

As far as anyone could tell, I was just shy. To them, I wasn’t impaired, I wasn’t having trouble understanding what people were saying to me or keeping track of conversations, and I certainly didn’t have processing issues, as far as they were concerned. I did my best to keep up, and I learned to keep quiet when I wasn’t keeping up. People just thought I was shy, and that was fine with me.

Eventually, I learned how to keep up. We had a lot of structured activities in the church youth group, which made it much easier for me to interact. If I was given a “thing” to do, I was fine. I still felt marginal, and I had trouble keeping up. But I figured out how to present myself in ways that disguised my difficulties. I learned how to pace myself and “present” in ways that were socially useful. And that worked out in my favor quite a bit.

I think that my experiences with being small and vulnerable and bullied made it easier for me to relate to a wide variety of people. I knew what it was like to be on the outside, to be made to feel not-important and insignificant. My mTBI experiences also shaped my view. I knew how it felt to be treated badly for no reason you could understand, to have more expected of you than you could reasonably do, and to lose faith in yourself completely.

I knew how all that felt, from a very early age, and I never wanted to do that to anyone else. If anything, I wanted to help others rise above that and really live their lives as best they could. I knew how terrible it felt, to be so vulnerable and afraid, and I hated the thought that anyone else around me might feel it. For me to feel it was one thing, but watching others in such pain as well… that was just too much.

In any case, I got through 1978, and it ended on an up note, with me learning that basketball and other team sports requiring speed and coordination were not my forte. I was starting to get on my feet again, after being spared the bullying for the second half of the year, and I was beginning to find my way.

It was exciting… thrilling… It really felt like things were turning around for me.

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.

You do someone a favor…

I love to help others, but I never know what it’s going to turn into…

… and before you know it, it’s taken over your life. That seems to be where I end up a lot. Maybe it’s my impulse control issues cropping up again.Maybe it’s my tendency to get consumed by what I’m working on.Maybe it’s that the “simple” favors end up being quite complex because A) I have to work harder at them to get them done, and B) I find all sorts of things that need to be fixed along the way, and being the perfectionist I am — actually, no, I just want to get it done right — it’s got to get taken care of.

This doesn’t just happen with favors. It also happens with my own projects. I start out with a simple idea,and before you know it, I’ve complicated things beyond recognition, and I build out a whole life-altering drama around a simple project I started because “it seems like fun”. Again, I find additional things to focus on (all of which seem quite important) and everything balloons into something incredibly huge and complex.

In both cases, I tired myself out,and then I make sloppy mistakes and have to double back and try again, thus spending about twice the mount of time I originally intended to spend on it.

The irritating thing is,I don’t realize it until much farther down the line, when I have used up a lot of time and energy. As they say in Peanuts… Arrrrrrggggghhhhhh! It’s so frustrating. Especially when I get tired and I mess up other people’s stuff. Fatigue is such a Pain In The Ass. It turns me into an idiot — and I don’t realize it until much farther down the line.

In the end, though, I do these things, and they help other people. And it’s good practice for me. It’s no good, hiding away and not doing anything, because of fatigue. I just have to work through it, and learn from each time.

So, I’m trying to wrap up a project I’m working on for a friend. And I’m trying to wrap up TBI S.O.S., which actually does need to be “built out” a lot more than it is. I’ve got a lot of it written, which is great. But there’s a bunch of stuff that’s hidden inside that I need to sort out. and I have a feeling that when I start digging into it again (after a 2 month hiatus), it’s going to stir up a bunch of “stuff” with me.

Which is probably why I have taken a break from it for this long. Yes, I have some other projects I’m working on which have pulled me away for very good reason. But I’ve also been really struggling with some of the things I talk about, and it’s not always easy for me to function well, when I’m emotionally upset. And that’s even more emotionally upsetting for me, which turns the whole thing into a downward spiral that’s both mentally taxing and physically exhausting. When I get upset, I tend to get UPSET, complete with an internal storm (which may not be immediately visible from the outside) that throws me off for days.

When I’m “emotionally hungover” as some of my friends call it, I feel marginal for days. I have a hard time thinking and handling basic things, and I feel like I’m in a haze. It’s no good, when you have to really function at a very high level on a regular basis. Having a history of solid achievement in my professional life is a double-edged sword, which makes life … interesting, shall we say.

On the one hand, it puts me in an enviable position at work, where people look to me and rely on me for support and strength and reasonableness. In the midst of the madness, I project a demeanor of calm, cool, collected level-headedness, and people confide in me, at all levels. I’m discreet, so they know they can talk to me without it getting out to everyone.

On the other, it makes it all but impossible for me to be able to “slack off” (or even adjust my pace) in my life, to catch up with myself. Sometimes I just need to adjust — so I don’t wipe myself out and plunge into abject misery — but I really can’t back off my level of effort and my facade at work (and at home and in the world at large), because people are depending on me, and they need me to be something I can only be under ideal conditions.

The rest of the time, I’m faking it. Which is great for others, but really a pain in the ass for me… and ultimately for others, when I get tired and start to make stupid mistakes.

And then comes the scramble to adjust for those stupid mistakes and do damage control

Which, again, is tiring. And takes more of the energy from me that I need.

And all the world gets dim and grey and a lot more taxing than it should/could be.

And the inside of my head and world nudges a little closer to the edge of that abyss I spend so much time trying to avoid.

But nobody really knows or believes the extent of my efforts. So, it must all be easy for me, and I must be perfectly fine and have all this extra energy and surplus.

Right?

God, just thinking about how wrong that is, makes me tired. So I’m going to turn my attention — and the energy from all my frustrations — to writing some more. Doing something productive. Doing something meaningful for myself and for others. My hope is that I can get this book finished in the next couple of months, and then I can publish it and send it out to providers who think they know about how to address TBI, but aren’t factoring in the Sense-Of-Self issues. In all my reading and video watching and talking to my own neuropsychologist, I have not heard much reality-based talk about the effect that personal experiences with TBI has on prognosis of recovery and outcomes.

It’s not that people are idiots (well, some are, of course). It’s that they’re looking in the wrong place. And because folks with TBI are notoriously challenged at A) self-awareness, and B) articulation, what our experience is actually like, and how it affects the trajectory of our recovery, falls between the cracks and is lost — never to be found. Of course, you can’t look for something that you don’t know is there.

But I’m here to say that personal experience (or phenomenological influences, if you will) CAN and DOES have an enormous impact on recovery from TBI. And when you have providers who have not experienced it themselves, well then, my friends, we have a problem.

Time to do some writing. Onward.

Here’s some traveling music for you: