Just for today – every day

This is how it can be – click the image to see the big picture

Something magical happens when I quit worrying about everything before and after Right-Here-Right-Now.

I get to focus on what’s in front of me, and just concentrate my energy on that.

It simplifies things.

It relieves my taxed brain of all the what-ifs.

It makes it possible for me to put every single bit of my attention on the activity at hand, and give it my all.

And that’s a really good thing.

One of the drawbacks of mild TBI is that it can really screw with your attention. It makes you susceptible to distraction. It tires out your brain, which makes you even more susceptible to distraction.

Think about it — there are pathways in your brain that have been all messed up, like roads that got washed out during flooding, or a small town Main Street that got completely wiped out by a tornado. Your brain isn’t gone, but the usual ways of information getting around, are disrupted, sometimes wrecked. And you have to find your way through.

That takes energy. And it can be frustrating. It takes creativity and constant adjustment. And that takes even more energy. It takes self-discipline and self-knowledge to manage your moods and behavior, and not many of us have that in abundance, after our brains are injured.

Me included.

But if I can focus just on what’s in front of me, and not get pulled off in a million different directions, well then… things work much better.

And I can pick my way through the rubble, move it out of the way, and eventually build up paths that take me where I want to go. Over and over, it needs to be done. And it can get exhausting and daunting to do it. But you’ve gotta keep the faith, and keep looking at the signs of progress along the way.

Even the littlest ones.

Focusing on today, the immediate moment, enjoying the good little things, and finding ways I can address the bad little things… that’s the ticket.

At least for today it is.

Post 1981 – Riding the downward slide

You may remember this

This is my 1981st post, and 1981 was the year my downhill slide started to pic up speed.

During my sophomore year in high school, I had started to drink and smoke pot. I had a rough year, my freshman year, and the next year, I realized that I could dull the pain and also fit in with people if I used “chemical enhancement”. Nobody cared if I had trouble understanding what people said to me.Nobody cared if I said strange things and lost my sh*t over stupid things. They didn’t care if I was distracted a lot, if I couldn’t finish things I started,and if I had an on-again-off-again brain.

All they cared about was whether or not I’d share a drink or a drug with them. If I did that,I was “in” — and in ways I was never “in” with any other crowd.

So, I did.

I went out partying with a bunch of friends… and those friends had other friends who did harder drugs. I’m happy to say I never got into really heavy stuff like cocaine or heroin — mostly because those drugs weren’t available when I was still partying. They were too expensive and too rare. And everyone was terrified of them — even the hardest luck cases.

So, I’m sure that didn’t help my brain at all.

I also played a lot of sports and had a pretty rough and tumble life, and I got clunked in the head a lot while playing soccer, football, etc. I ran cross country and did track and field, because they let me get away from everyone and be by myself, while also being part of a team. Coaches from other sports tried to recruit me, but I wasn’t feeling up to it. It just felt too hard, to have to keep track of all the action on the field. I loved baseball, but I had a hard time judging distances, so I wasn’t much good in the outfield. I also had a hard time staying really focused on what was happening in the infield. I got distracted a lot. So, I played third base a lot. Part of the action, but still on the margins.

My junior year was the peak of my athletic performance. I was captain of both the cross country and track teams. And it was probably the highlight of my high school career. The following year… well, I’ll talk about that later.

When I look back, my recollections are darker than the whole experience actually felt at the time. When you’re in the thick of things, just trying to get through, you can lose yourself in the experience of life, but when you look back, you see all sorts of things that you didn’t realize at the time. And a lot of those things aren’t always that great. Because you realize that you were caught up in something that was a lot more difficult than you wish it had been, and you can’t help thinking, “What if things had been different?”

I’ve been getting caught up in that a lot, lately… looking at things as they are and wishing they were different. Work is difficult, right now — mostly because there are all sorts of rumors and gossip and uncertainty, and once again I feel as though I need to make a shift away from how things are… start fresh. Leave all this behind. I hate the whole thing of getting up and going to work each day, and I’m feeling pretty stuck… even though I know I’m not.

When I was a junior in high school, I did feel stuck. I lived in a rural area that didn’t have a lot of contact with the rest of the world. There was no internet, there were only three local  television stations we could pick up on our black and white set, and the public library was the only connection I had to the wider world. I felt so cut off from where I wanted to be and who I wanted to be, and I didn’t know how I was going to get where I was going.

I knew I had dreams. I just couldn’t do anything about them at the time. All I could do, was bide my time till I was 18 and able to be self-sufficient. And go out into the world and be a writer.

‘Cause that’s all I really wanted in life. To be a writer. Well, actually I wanted  to be a forest ranger (mostly to spend a lot of time alone in the woods) or a conservationist of some kind.  I wanted to travel the world and experience things and write about them. I was going to be an adventurer who wrote pieces for National Geographic about boating on the Amazon or climbing the Andes. I was going to do all of that. Be wild and free and write all about it.

But I kept getting hurt. I kept getting in trouble. I kept getting caught up in the wrong sorts of company, and that really took a chunk out of my capacity to invent my own life. I also got married fairly early… saw that marriage dissolve… and married again not long after. I don’t regret the second marriage. It’s still going strong. But my spouse was sick a lot, and they were very poor when I met them and unable to provide for themself. So, I’ve spend the past 24 years providing for both of us, for the most part (except for a brief and very rare stint in the early 1990s when they were making more money than I was, holding down a bigger and better job than I had).

So much for roaming the world.

But looking back, I have to say it’s been well worth it. I wouldn’t have stayed, if it weren’t so. And I have had some pretty amazing experiences along the way, even if my surroundings have been pretty tame. I’ve done good work, and I’ve been part of some pretty amazing teams, doing some pretty amazing things. All this, while dealing with a sh*t-ton of blocking issues that I just moved through and worked around.

In a way, it has been an adventure, all along the way. I have to remember that. I haven’t been unhappy through the years. I’ve been challenged and engaged and pulled this-way-and-that, and I have built a good life in the process. And looking at my life now, I can see that I actually am the person I was hoping to become. Despite all the setbacks and difficulties, if I had met the person I am now, when I was 16, I would have been pretty impressed. I’m not perfect, but that’s not what would have interested me.

Being interesting was… and that’s what I am.

That’s what I have to remember — a lot of things may be wrong in my life, and I might need to sort a lot of stuff out, but I really am happy with the person I’ve become. All those experiences made me into who I am — here and now. And it’s good.

Well, the day is waiting. 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.

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:

Hello Saturday – welcome!

Got some work to do

I’m having a great Saturday, so far. I woke up early and got some work done on a project I’m helping some people with. It’s been a really good experience for me,because I’vebeen thinking about offering this service to people for a fee. Now that I’ve been through the process, however, I’m not sure I want to spend a lot of time doing this sort of work. It’s a little tedious, and it involves a lot of sitting, which is not that great for me — and is actually what I’m trying to get away from.

So, it’s good that I’ve gone through this exercise. It’s giving me more information to work with — so I don’t waste time on things I don’t really want to do.

I’m also winding down on another big project I have, so I will be able to turn my attention back to TBI S.O.S – Restoring Your Sense-of-Self After Traumatic Brain Injury. I have gotten away from that for several months, and I’m looking forward to getting back to it.

On the bright side, I have been really good about not spreading myself too thin, so I can finish one thing before I start another. This is a big change for me. Massive, in fact. In the past, being scattered and not able to focus on one thing at a time cost me a lot. It kept me from moving forward, and I was always getting down on myself for being such a loser and never being able to complete anything. Now that I have been actively working on my focus, and I have more confidence that I can actually complete things I start — and I know how to say NO to things that distract me — I’m able to follow through, and it’s pretty awesome.

After I do some work around the house today, I’ll have my nap and then sit down to make more progress. It really feels fantastic, I have to say.

So, the day is shaping up nicely. I got a lot of chores done last week, so I don’t have to do a lot of little things today. I have a handful of big, important things that absolutely need to get done.

And now I can do them.

Onward.

I’m up early today

Cutting through the cloud

I’ve been getting to bed around 10 p.m., which is good. And I’ve been waking up early, which is also good. I just wake up. Then I lie in bed for a while, stretching and just feeling comfortable. Then I have to get up. I can’t just lie there. I have things I want to do, before I go to work. So, I get up, make myself breakfast, and then sit down to work on things that are mine, not someone else’s idea.

I’ve been finding some really cool pictures, lately, which visually depict how I’m feeling. I found pictures of underwater sculptures by Jason DeCaires Taylor at http://www.underwatersculpture.com/sculptures/, and they seem to depict how I feel, pretty much every day.

I’ve been trying to summarize for my neuropsych the different aspects of my personal situation that they haven’t been acknowledging or addressing. They have been treating much of what I deal with like it’s an emotional reaction to stuff, rather than seeing that I’m really struggling to express what I’m experiencing.

I’ve ignored their cluelessness for years, because it’s worth it to me to have someone to talk to, and just being able to talk to someone and practice organizing my thoughts out loud is worth the world to me. But it’s so frustrating for me to try to articulate what is happening with me in words. In writing, I can do it. But when I’m sitting in front of someone, being watched, I tend to lose it. I get so far, then I have to stop. I can’t go into details. I’ve had too many bad experiences, trying to disclose my issues to others, only to have them either freak out on me, contradict me, or make fun of me, or tell me I’m lying.

I don’t “present” like most brain-damaged folks do, so the depth and range of my issues do not really come through, loud and clear.

So, this is just one more person in my life who doesn’t know and doesn’t help in some ways.

But they have helped me, just being there… and also being very focused on human performance and improvement. Most of the people I know aren’t interested in really pushing themselves to be better, to get better, to live better. They’re happy with just relieving their pain — pain they cause to themselves.

It’s an endless cycle with most people I know:

  1. Get sucked into bad, destructive habits of thought and action:
    • Don’t eat right, don’t exercise
    • Get caught up in negativity and pointless drama
    • Get all worked up over misperceptions and mistaken impressions
    • Fall into the customary abyss of negativity, criticism, and frustration
  2. Suffer each and every day, each and every waking moment… usually without realizing it.
  3. Long for release and relief. Usually without realizing it.
  4. Do things that will relieve the pain and suffering they have caused themselves, thinking that it represents progress.
  5. Just be happy that the pain is temporarily gone.
  6. Get up the next day and go back to doing the things that cause them pain and suffering.
  7. Wash, rinse, repeat.

My neuropsych is actually not into that at all, and we are on the same page, in terms of breaking free of all the bad habits of thought and action that stoke human misery.

They’re just sorta kinda wrong about the source of much of my pain and suffering. I know there are things I do which make my life more difficult. Not exercising as much as I should, eating too much sugar on some days, and sinking into frustration and despair are some of the things that drag me down. But not all of these things are caused by poor habits of thought and action.

Some Most of them are because of my TBI issues, which I really struggle with, even though they don’t show. Most people don’t know how often I am in pain, am confused, am turned around and don’t really know where I am, or I literally feel like I’m dying. I know how to keep going without making a fuss about things. I keep going, because I know that a lot of this stuff is temporary — or if I can just get my mind off it, I don’t have to be held back. So, I focus on other things. And life goes on.

I don’t know why I am so concerned about my neuropsych not knowing what all is going on with me. Maybe I just reached a point of critical mass, where I realized just how different their perception of me is from my personal experience. Maybe it’s because of the whole neuro involvement, where the two of them will (probably) be talking to each other, comparing notes, and there’s a chance that their two perceptions of me will be very different, so they’ll both think I’m lying, and I’ll be back at square one. Maybe I’m just tired of hearing the mini-lectures about how our minds give rise to everything.

There’s a whole world view called “mind-only”, and I suspect my neuropsych adheres to it. I have my own take on that. But it’s too complicated to go into, right here.

Bottom line is, I’m up early, I have a few hours to do what I like, till I head out to work. I’ll get some more exercise, I’ll work on my projects, and I’ll prepare for the day. I may even get to work early, so I can make up for some of the billable hours I missed yesterday.

We’ll see.

Onward.

 

Without the protective shell

They usually help

Vitamins that have lost their protective shell are pretty nasty-tasting. I got a little reminder of that, just a minute ago, when I took a couple of vitamins that had been sitting in some melon juice. My breakfast is usually toast and a banana, a couple cups of coffee, and my vitamins.

But today I had no ripe bananas, so I put some cut-up fruit on my plate. Watermelon, cantaloupe, honeydew melon, pineapple. And some of my vitamins got in the melon juice, removing their protective coating and reminding me – yet again – why they have a protective coating in the first place.

Nasty.

Anyway, I’ve been thinking a lot about how I walk through the world, and all the adaptive behaviors I’ve developed in order to function the way people expect me to. It’s like I’ve been living undercover for most of my life. I started having real problems after TBI when I was 7-8 years old, and it didn’t stop there.  And I’ve been through the wringer with so many people over so many things — saying and doing the wrong thing, looking dorky, not being able to move very well at times, and struggling with basic stuff after getting injured, again and again… and then getting roughed up (figuratively speaking) by people who had no information or patience for me and my inconsistencies.

I was supposed to be so smart — no, actually, I was smart. Yet, I couldn’t manage to get my act together. Always running into problems. Starting things and failing to complete. Completing things and doing them wrong. Running numbers and ending up with a mess of calculations that were all incorrect.

Part of it was because I was a little too smart for my own good, and the other part was, I had a lot of invisible deficits and challenges that nobody really believed existed.

So, I learned to live the way others expected me to, and I took on the roles that got me rewarded. Club member. Town board member. Team leader. Breadwinner. Business owner. Professional. All that. I learned how to present myself in ways that satisfied the social requirements. I practiced and practiced and practiced, making sure I had it “down” and I could pass for the sort of person who would succeed in the world.

And it was good enough. For everyone else.

Meanwhile, I’d end up completely wrung out and beside myself, by the end of each day, unable to think past the next five minutes and melting down over every little thing. I’d go so far, then come up short — running out of steam, running out of ideas, not understanding the nature of my problems, and certainly not knowing how to address them.

Living that way for over 40 years has its effects. It builds habits that are hard to break. And when you have to break them — such as when you’re trying to get help? Then what?

An excellent question.

I’m trying to find that answer right now. To be honest, I’m not sure I’m going to find it. There’s a chance, it’s too late for that. I suspect my protective shell is too functional and too intact, to let me really show what’s going on with me, so I can get help. I’ve tried reaching out, but it seems that my success at compensating is working against me, and I’m left with the overwhelming sense that I — like so many others dealing with mild TBI — am pretty much on my own, and no one without TBI (even trained professionals) can ever understand just what it’s like.

I don’t know why this is tweaking me, right now. It’s not like this is news to me. I’ve been well aware of the isolation of TBI for years, now.  But all of a sudden, it’s become important to me. Significant. Probably more “important” and “significant” than need be — no doubt thanks to my sleep-deprived head (I blame the recent nightmares about having to choose between letting myself be killed, or watching others I love be injured or killed).

I suspect it has to do with embarking on this quest to find a neurologist who can work with me on my headaches, tremors, twitching, and other symptoms that have become more noticeable and bothersome over the past year. The idea of trying to explain myself to them just puts me over the edge, sometimes. I’ve been down the healthcare road — to no avail — so often, and only recently have I found a doctor I can talk to and work with (who is actually becoming less and less engaged, as they absolutely hate the practice where they work).

Now it feels like I’m starting all over again, and I have to let down the shields to tell this new neuro what the heck is up with me.

Panic.

And like the vitamins that left a really bad taste in my mouth after I took them earlier, I’m left with a really bad taste in my mouth about trying to communicate with my healthcare providers. It feels like I have to drop my defenses and expose all the most difficult aspects of my experience, in hopes that they’ll be helped, somehow. I’m not sure if they will be. I’m not sure if they can be. I’m not sure if I can adequately communicate them. I’m not sure if anyone will believe me.

And in the meantime, I’m left defenseless and vulnerable, and that’s a terrible feeling.

Dealing with the mainstream medical establishment makes me nuts. I’ve never done it particularly well. I’m not sure anyone has. It’s like we have to just throw ourselves on the mercy of the system and hope against hope for the best. It can be so dehumanizing. There’s a reason so many people turn to alternative healthcare, including “folk” healers in place of medical doctors. Healers and alternative folks (in my experience) put a focus on listening and treating the whole person — body, mind, and spirit — not just diagnosing a medical condition and hammering on it with prescriptions. So much of what ails us involves ALL of us, not just a handful of symptoms, but modern medicine seems to not quite get that — yet.

Anyway, I’m tired today, and I have a couple of busy days ahead of me. I have some hopes for this weekend. We shall see. With any luck, I’ll be able to have a little of the peace and satisfaction I found last weekend. I’m sure a nap (or two) will help. That, and just getting my mind off the whole neuro thing.

For the time being, anyway.

The day is waiting.

Onward.