Swimming through the downwelling — Got my STP going on

Good stuff for a tired-ass rainy day

When in doubt, Stone Temple Pilots are good company to keep. I’m listening to No. 4, and it’s as good as ever. I went through a period, over the past few years, when I didn’t listen to much rock music. It was a lot of electronic stuff — trace and whatnot. Always good for getting me flying down the road, to and from work.

Lately, though, I’ve been getting back to my good old rock ‘n’ roll. Lots of hard rock, as I drive to and from work. And it feels normal again. Like I’m picking up where I left off, a few years back.

It’s like I went on a detour for a few years. Thinking I was going to be or do something different. I blame that last job I had, where I was so out of place, and I just didn’t fit in at all, and I needed to take the edge off things.

The whole last ten years feels like a big-ass detour for me. It was that damn’ mild TBI in 2004 that screwed me up. I’m still pissed off about it, and how it derailed me. I’ve been swimming upstream, trying like crazy to get where I’m going, fighting a current I couldn’t see — a downwelling, as they call it in the ocean – watch a video about surviving downwelling here.

In a downwelling, when you’re scuba diving, an invisible current hits you and carries you down-down-down into the depths — potentially past your approved depth. It can take you down very quickly — fast enough to increase the nitrogen in your blood enough to make you feel — and act — drunk. And also pressurizing you very quickly. It’s crazy. If you get caught in a downwelling and can’t get out, you’re done for.

That’s kind of like what chronic mild TBI / concussion is like. Most people see their issues resolve in weeks or months, but some of us are stuck with them, and they can catch us unawares and plunge us into the depths — towards the abyss — before we even know what’s happening. It can be deadly. And if you choose wrong, you can get totally screwed up.

I didn’t realize until late 2007, that there was really a problem — three years past my injury. Everything went downhill, and I didn’t even realize it. Money was disappearing so fast, I might as well have set piles of it on fire. I jumped from job to job, not realizing how it would affect my future job prospects. I could not read, I could not learn, and I felt like I was literally disappearing from my life. I could not go outside very much, because of my light and noise sensitivities, and I had cataclysmic panic attacks that felt like seizures.

I was in the grip of a “life downwelling”, and I didn’t know which direction to swim to escape.

A number of things happened to help me along the way

  1. I realized that something was wrong
  2. I realized I needed to do something about it
  3. I hunted high and low to find information and people who could help me understand what was happening
  4. Almost by chance, I connected with an excellent neuropsychologist who was able to help me soldier through
  5. I just kept going, no matter what

I’m now at a place in my life where I’m back on track. My mountains of debt are gone, my job situation is stable, and I’m able to read again.

And yet, I feel like a stranger to myself.

Technically, I supposed no one really knows themself inside and out. We all delude ourselves to some extent. But with TBI, it feels to me like there are a ton of gaps that I just can’t fill. I don’t even know where to start. It’s like my life is a big hunk of swiss cheese with a lot of holes in it, and I don’t even know the holes are there, till it’s too late. I’m in trouble again.

Anyway, STP helps me get my mind off that. They help me just keep going, even when I’m not feeling up to it. Keeps me swimming — out of the downward spiraling current and up towards safety again. A good dose of heavy guitar and rock lyrics gets me back on track in useful ways.

Gradually, I’m coming back to where I want to be. It takes time. And I need company, along the way. STP is good company. Thanks, guys.

Music is the best company I can think to keep. It’s there when I need it, and I can always turn it off, when I’m done for the day.

Speaking of the day, I’ve got to get on with it. I’ve got a handful of things I need to do today, including resting up. It’s been a long, long week, and I need a break, for sure. I’ll get that break later today after my chores are done, and I can comfortably settle into my bed, pull the covers over my head, and just check out.

Looking forward to it.

But in the meantime, there’s always hard and heavy rock music.

No, we are definitely not alone

We’re all in the same boat, kind of

My job went well today. I have good days, and I have not-so-good days. But there is always another day to come. I was quite rested from the long weekend, and because I don’t have a short 4-day week, this week, I can work regular hours and not have to “bulk up” on my hours, so I can come close to breaking even.

I also canceled an evening appointment tonight, too, which turned out good, because we had heavy rain storms this evening, and I would have been caught in a nearby city in the pouring rain, if I had gone in. But I didn’t. I took my time getting home, and I saw some very impressive downpours and washouts.

Ah, summer.

Anyway, now I am on hold with the insurance company, because I messed up my coverage election, and I am currently without health coverage. This could be a real problem, but I’m not letting it get to me. I just need to jump through some hoops and deal with it. I can’t get all anxious about what *might* happen. I need to focus on what is and is not happening, and just stick with the details.

I noticed at work today that there are a lot of people in my same boat — we’re new, and we’re figuring things out. Some of my coworkers are ultra-helpful and bend over backwards… while others are more cliquish and don’t want to extend themself to the “newbies”.

At least there are a bunch of us who are in the same boat.

And I think about how many people there are in the same situation as me, hassling with paperwork they do not understand, trying to get help from people who aren’t very interested in helping them on the phone, hassling with devices and whatnot. I hate talking on the phone, because it is hard for me to hear and process things quickly, without seeing the person I’m talking to. It’s very stressful for me, but I have learned how to keep the person on the line until they have answered all my questions at least 2-3 times.

I make them repeat what they said, then I repeat it back to them, and ask them to confirm what I understand.

It’s awkward and difficult, but I get the answers I need that way.

You do what you have to do.

And if I let it get to me, it would make me NUTS at how convoluted and confused everything is. If you don’t have 100% clarity of thought, or if you’re distracted or you have some other cognitive issues, the system is pretty much stacked against you. That means a ton of people aren’t served very well by much of anything we have in place in this country.

I am definitely not alone.

But instead of getting all tweaked about it, I’m going to write up my notes from my call, gather my wits about me, and warm up my supper… and have a nice evening relaxing and reading.

It’s all good. It’s just a real pain in the a$$ sometimes.

 

I didn’t fail. I just got tired.

So much depends on your outlook

I had a revelation this morning, as I was waking up. In the space of a few seconds, it turned an imagined failure into a chance for long-term success.

It was the realization that when I started to lose my temper with my spouse last night, it wasn’t a sign that I was failing at my attempts to be more level-headed and calm, no matter what the situation. It was a clear sign that I was tired, and that my brain needed sleep.

I have been working on being more level-headed — no matter what the situation. This is a lifelong pursuit, actually. I saw the need for it, when I was a teenager and a young adult… as an adult in the working world… and it continues to be important to me. It’s not that I want everything to be perfect for me all the time and give me no trouble. What I want, is to be able to handle my circumstances, be okay with them (within reason), and make the best of any situation’s opportunities, no matter now “bad” it may look at the time.

I have had some good success with this approach over the years. After all, I have seen the ill-effects NOT having a level head in challenging circumstances, and the results are rarely pretty. I have had plenty of opportunity to witness this in the people around me — in my family, especially, when my parents could not hold it together with one of my “problematic” (that is — drug-addicted, alcoholic, sleeping-with-anything-that-moved, drug-dealing) siblings. It was bad enough that my sibling had all those problems (which were signs of something far deeper going on with them). But my parents could not maintain their composure or clarity of thought when it came to my sibling, so that made a bad situation even worse.

I’m not judging my parents — they were not equipped to handle it, and we lived in an area where any problem with kids was a reflection on the parents, so they went from being respected members of society to being “those people” who everybody handled very gingerly.

Anyway, I’ve seen many examples in my own life, where keeping a level head and a calm demeanor helped me through tough times. I actually credit my many TBIs (I’ve had 9+) with helping me with this, because they slowed down my processing speed. When your processing speed is slowed down, it makes it pretty difficult to get on the same wavelength with everybody else… and in case you haven’t noticed, being on the same wavelength as everybody else leaves a lot to be desired.

Everybody gets so worked up over things. But when you’re not thinking as quickly as everyone else, you can’t jump to the same conclusions and get to those snap judgments that can send you careening into HOLY SH*T WHAT THE F*CK land. Everybody else is freaking out — oftentimes about something that isn’t worth freaking out about — and you’re still trying to figure out what just happened…

So, if you think about it, slower processing speed isn’t always a bad thing. And equanimity… peace of mind… level-headedness in the face of a crisis is a definite advantage. Especially when everybody else’s “normal-fast” thinking is vectoring off in a really unproductive direction.

Anyway, that’s one half of the story. The other half of it is less cheery — that’s the aspect of my thinking that is WAY more reactive than others’. It’s the instant-freak-out part of my experience that has made me nuts for years. At an instant’s notice, I’ll suddenly FREAK OUT over something. It can be a dropped spoon, or a missed channel that I’m trying to change with the clicker, or something my spouse says or does that rubs me the wrong way.

When things go haywire in my head, they go really haywire. There’s no middle ground. Everything goes nuts. I know I’m being unreasonable, I know I’m being crazy, I know there is no logical reason for me to be freaking out, but it’s happening anyway. And it’s never good for anyone. I’ve lost more relationships than I can say, because of this. That includes a really good job I lost in 2005 after my TBI in 2004.

People are afraid of me, when I start to get agitated and aggressive — which may have to do with me, or may have to do with them. I don’t want to give anyone any reason to be afraid of me. It’s counter-productive. And it hurts everyone involved.

So, there’s all the more reason to keep tabs on myself and foster a calm demeanor, a cool head, and a self-possessed state of mind. And with that goal in mind, I have pursued a number of different practices and philosophies that might help me with that. I have worked on practices that emphasize acceptance, calmness, not reacting to things around me, and philosophies that teach about how transitory life is, and how important it is for us to understand what we can and cannot change, and not make ourselves nuts trying to alter things that can’t be changed.

Like the serenity prayer:

God, grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.

This has been a very powerful concept in my life, and I have it displayed in my kitchen where I will see it each morning when I get up and make my coffee.

Along the way, I have had many surges in interest in deepening this practice — in really getting to a place where I can make peace with the things I cannot change, and make the most of the opportunities that are hidden there. I’m a big believer that some of our worst hurdles and challenges offer us the greatest rewards — and when we resist those challenges, we miss out on the chance to become bigger and better than ever before.

Some things I can accept and work with — political changes, cultural changes, relocations from one area to the next, and small-scale changes at work. Other changes I have a harder time with — job changes, especially. The ones that make me the craziest are the ones I feel like I cannot understand or control — or that go off in a direction that is completely different from the direction I see myself headed.

Other things I cannot seem to accept, are the foolishness of others — the stinkin’ thinkin’ that my spouse indulges in, their constant anxiety, their devotion to drama, their bad habit of telling everyone exactly what they want to hear instead of the constructive truth. I have trouble with the attitudes of people at work, who can be cliquish and juvenile. I have trouble with the judgment of Management at work, when their decisions seem counter-productive and get in the way of us doing our work. My siblings also depress the sh*t out of me, with their choices and their prejudices and their holier-than-thou attitude. My parents are a little easier to deal with, because they are many hours away, and I don’t see them that often.

It’s the people who are closest to me, who I have the greatest investment in, that get me with their unhealthy habits of thought and action, their outlooks, their attitudes, and their behavior that seems to serve no useful purpose, other than to make them feel good about themselves — at the expense of everyone else.

The thing is, their behaviors and beliefs and actions have almost nothing to do with me. Even my spouse’s bad habits have more to do with them, than with me — no matter how much they may blame me for their anxiety. I am making myself unhappy over things that are far beyond my control, and it’s not helping me at all.

So, there is all the more incentive for me to calm myself down, not react to what they are doing, and step back and look at them and everything from a distance.

I have found some philosophies and outlooks that can help me do that, and I have pursued them eagerly, on and off, over the years. The thing is, I get to a certain point, then everything falls apart. My equanimity dissolves. I melt down, inside my head and heart. My temper explodes. And I end up feeling worse off than when I started. I feel like I’m back to Square 1, without having made any progress at all.

But in fact, I have made progress. My meltdowns and explosions do not mean that I have utterly failed at learning a new way of thinking and being and relating to others. They do mean that my brain has been working hard, so it is tired. And I need to rest it.

Because changing yourself and your brain and your patterns of thought and action and attitude is hard work. It doesn’t happen overnight. And the fact that I am getting frayed and losing it, actually means that I am making progress — I just need to take a break, rest up, learn what I can about what sets me off, and resume learning again, once I am rested.

This realization is just what I’ve been needing — for a long, long time. Getting frayed at 10 p.m. over someone being a pain in my ass is NOT a sign that I’m failing. It’s a sign that I’ve been working hard all day at changing my mind and my brain, and that it’s time to rest. It’s not a condemnation — it’s a diagnostic tool. And far from being an indication of my inferiority, it’s evidence that I’m actually making progress.

The simple fact is, I’m a brain-injured human being. If you think about it, there are a lot of people who are injured in one way or another, and we are all working our way through the maze called life, trying to find a better way to live. And because of my injuries, because of my history of experiences, my individual makeup, and all the different things that have made me what I am today, I have certain limitations I need to be mindful of and accommodate, so I can work around them and not let them get to me.

Fatigue and the irritability that comes from being tired are a couple of those limitations. So is:

  • a sharp tongue — over little things
  • a hot temper — at an instant’s notice
  • slower processing speed than one would expect
  • the almost constant pain that I’ve become resigned to living with, the rest of my born days
  • perpetual, never-ending tinnitus
  • light-sensitivity
  • noise-sensitivity

And so on.

It’s not that my life is awful. It’s pretty sweet, to tell the truth. I just need to be aware of these issues, not forget them — or when I do forget them, find a way to remember that the things I’m doing and saying are about my brain injury, NOT about my character.

So, there is hope. There always is, so long as I don’t give up.

And speaking of not giving up, I’m going to get ready for work and get into my day, knowing that I didn’t fail last night, when I got cross with my spouse. I was just tired, and no animals were hurt in the filming of that movie.

Onward.

Adapting… and realizing how much good it does me

I have had a few days to “decompress” after my trip to see my family. Two full days of driving — 8 hours there, 8 hours back — did a number on me, and I’ve been foggy and dull since I got back. Also, the pace was relentless while I was there. My family goes at top speed, pretty much all the time (except when they’re sleeping, which fortunately happens more often, these days).

So, all in all, it was a very challenging time — a challenge which I nonetheless rose to, with all good results.

The thing is, now that I’m back, I need to re-acclimate to my everyday life, which is very, very different from how things are at my parents’ place. It’s much quieter here, much less active, and a lot more contemplative. It’s ironic, because my family is very religious, and they consider themselves very spiritually connected. Yet they are so busy going-going-going, they hardly have any time to deeply consider their thoughts and their actions and the consequences of them. I love my parents dearly, and it pains me to see them declining — a little more, each time I see them — because they simply won’t take a close look at what they are doing and eating and drinking and living, and accept what it’s doing to their health and well-being.

My father considers himself a self-made man, which is true in that his diabetes has worsened because of the choices he makes. He thinks he can wish the condition away, but his actions and choices of foods make that all but impossible. My mother considers herself a socially connected person who cares deeply about others, while at the same time she buries herself in busy-ness whenever close friends of hers are in trouble.

I got a good look at my potential future, visiting my parents. And I also got a good look at how things could have turned out for me, had I taken the same path as my siblings. My brother has done well for himself and his family, yet he’s living in a place that is hostile to his deepest beliefs and convictions. My sister-in-law once had big dreams, though over the years she’s limited herself more and more and more, till the thing that means most to her is having a part-time job that lets her take care of house chores. Their kids are doing great, which is gratifying, so there is a whole lot of good that’s come out of their choices. And yet, I wouldn’t trade my life for theirs for any amount of money. Parents make sacrifices for their kids all the time, and I have no argument with that. I do have a problem, though, with completely throwing big parts of yourself and your hopes and dreams and internal convictions out the window, to fit in and be safe.

Of course, people do that all the time. That’s for them to live with. It’s not for me to judge. For myself, though… I choose something different.

And coming back from the trip, I look around and realize that the life I have really does fit me exactly. I’m doing great. I have my limits and my challenges, but I can adjust to overcome them. I have been in a lot of pain for the past few weeks — not headaches, but a lot of back and leg pain — and my mind has been foggy and dull. I have forgotten some things I really needed to remember at work. Other people needed me to remember them, too.

I made a couple of really unfortunate choices at work, the day I was back, and I feel like I’ve been scrambling to catch up, ever since. I mean, one of the mistakes I made was the exact opposite of what someone had asked me to do — and entrusted me with — just 15 minutes before. And I dropped the ball. I was supposed to “buddy up” with someone new at work, and have lunch with them. Their usual buddy had a lunchtime meeting they had to attend at their desk, so they couldn’t do lunch. I managed to keep it together and get the new person down to the caf, then for some reason I spaced out and went to sit in a different area — completely forgot about them and my mission to buddy up… I basically left them to fend for themself among virtual strangers, which would have been a crappy thing to do if I’d intended to do it.

Of course, I didn’t. But that’s what happened. Instead of staying down in the caf, I went back to my desk… across from the person who had asked me to sit in for them. And I didn’t remember what I was supposed to be doing until after I sat down at my desk and realized that I was sitting across from the person who’d asked me to fill in for them.

So, I was feeling pretty stupid at that point. Talk about dull and clunky. And then I spent the rest of the day trying to figure out how to make up for it. I still am. I can’t very well go to the person and say, “Dude, I totally forgot all about you,” because how would that make them feel? Un-memorable, that’s how. And I can’t explain that I have short-term memory issues, especially when I’m exhausted, because that’s going to hurt my prospects at work.

All I can do now, is adapt and go out of my way to be helpful as best I can, and hope that I can develop a decent working relationship with this new person — despite that first faltering interaction.

Realizing how dim and dull I have been, I’ve been turning to my lists again for help, and it’s really doing me some good. I’m actually getting things done, that have escaped me for weeks. I finally got my COBRA insurance papers together and sent them off with the check, so my coverage is re-instated. I had read the paperwork when I first got it, but I missed the part about how you’re not actually covered by ANY insurance, between the time when your coverage ends, and it’s re-instated retroactively. So, the doctors visits that have been happening may not be covered by my COBRA. And I may need to pay out of pocket for them.

That really upset me, and I was thrown off all day yesterday. I also got anxious about the possibility of some medical emergency happening. I expect my coverage to be reinstated next week, and the idea that something serious could happen between now and then was weighing heavy on me.

Then I decided to just roll with it and let things happen as they will. I’ve got no credit card debt, and if I need to set up payment plans, I’ll do that. I’ll figure something out. I’m making enough money now to hold me in good stead.

I also need to sort out some other medical coverage stuff that is so confusing to me, I don’t even know where to start. I have been sweating it out, thinking I’m never going to figure any of it out, and it’s kept me from stepping up and doing something about it. The thing is, I’m not alone in figuring it out — at least, I don’t have to be. There are toll-free numbers for people to call, and I am planning to do that. I just need someone to walk me through the details and explain them to me. It could be that I incur a penalty because the timing of leaving my job and terminating my regular coverage and getting signed up for new plans is all screwed up, but at this point, I’m not sure I care. I’ll just make the money I need, to get by.

Or I’ll adjust in some other way.

The idea of having someone to talk to about this, is really helping me a lot. I’m not alone. I don’t need to figure it out by myself. Nobody is going to know how impaired I am, if I’m asking for clarification. I’m sure even the most brilliant people need help with all this insurance complexity. The whole system is convoluted and filled with veritable land mines, and it’s been that way for a long, long time. I just have to use my head and keep moving — and use the help that’s offered.

That being said, I need to set up time for my spouse to give permission for me to talk to the insurance folks on their behalf. I have to figure things out for both of us, and since my spouse is a few years older than me, issues like Social Security and Medicare are on the horizon. Not sure how that happened so quickly, but there it is. It’s hugely confusing for me, but I have to handle it, because my spouse cannot even begin to approach all the details — they’ve got even more impairments than I do, and their biggest one is panic-anxiety, which pretty much keeps them hostage and immobilized in a self-perpetuating prison.

So, I need to get on the horn with the SSA and other folks to talk about what’s to come on down the line, eventually. There are fees and penalties or some-such, if we do things wrong, and I think we already have stepped over the line. Oh, well. I guess I’ll pay the fees and penalties, then. The good news is (I think), my spouse has been so marginal for so long, not paying into Social Security, but 10 years out of their entire “career”, so that if the government takes a percentage of their SSI payments, it’s going to be close to nil. There are some benefits to living on the margins, I suppose.

Anyway, it’s all a grand adventure, and even if I am dull and foggy and in pain and out of sorts, I have tools I can use to get me by — making lists, and also getting someone on the phone to help me understand everything. There’s also the Web… there’s that.

Speaking of which, I need to sign off now and go check out some websites, in hopes of making sense of things. I suspect I’m going to be a bit screwed by the system, because I don’t know the ins and outs and I don’t have a lot of people in my life who are in the same situation who can help me avoid penalties and fines and all that. But I’ll adapt. At least I have my life, I have my independence, and my life is pretty much how I want it to be.

It’s all good. It really is.

Onward.

Me and my seclusion

Ah, solitude…

An interesting thing has happened with me, since I changed jobs and have more time to myself at home now. I seem to have turned into a bit of a hermit.

Actually I’ve always been a hermit, only now I have the time to go back to it more than ever. I’ve been keeping to myself for the past three days, not doing more than I absolutely have to, and not going on social media much — other than finding WordPress blogs about TBI and concussion.

And it’s really, really nice.

I had struggled for years with feeling like there was too much hustle and bustle in my life, with my day job being the biggest time sink of my life, not leaving me much time to relax and take it easy. Since around the time of my mild TBI in 2004, when I was working just 20 minutes down the road from my place, most of my jobs had long commutes. I did have a contract position for a little over a year, in 2006-2007, and I had another job close to home in 2010-2011, but for most of the past ten years, I’ve had long commutes — an hour (plus) each way.

I had not realized, till lately, how much that has taken out of me. It wasn’t just the commuting that sucked, it was the fatigue. The constant fatigue and exhaustion. And it took such a toll on me.

The biggest casualty of that weariness and time sink, was my peace of mind. My seclusion. My quiet. Looking back on my life, I realize that until fairly recently, I just took for granted that it was going to take me at least an hour to get to work. Sometimes two. It was the price I paid for a good job.

The fact that I don’t feel that way is yet more evidence that my recovery is commencing — and that I’m in better cognitive condition now than ever before. I no longer rely on stress and strain to wake myself up and make myself more alert. I no longer just assume that having a good job comes with a high price tag. I’m not in the “no pain no gain” mentality, anymore, and that’s huge. Absolutely huge.

And it gives me hope. Because doing away with the habit of using stress-and-strain to wake myself up and make me more alert, means I’m inherently safer in the way I live my life. I cannot tell you how many times I have either gotten hurt… I have nearly gotten seriously hurt… or I made choices that could have put me in an early grave… because I needed the rush to wake myself up. Just on a very basic level, on a day-to-day basis, I used stress to numb my physical pain, to heighten my senses, to make me more alert, and to get myself going when I was feeling sluggish.

And I didn’t worry too much about not having a lot of time to myself. Because going-going-going and getting a ton of things done was so important just to my basic sense of well-being. Yeah, I valued my time alone, and I have gone for years being pretty much of a hermit in my own time. But there wasn’t this powerful devotion to seclusion.

Nor was there good discipline around using it well.

I had a lot of plans, I had a lot of hopes and dreams. I had a lot of ambitions. But none of them truly amounted to anything, because I did not apply myself on a regular basis. I did not use the time I had to make progress. I flitted from one idea to the next, thinking I was just being “free”. And now here I am, years — decades — on down the line, without much to show for all those dreams and ambitions.

I’ve been down on myself for having gotten to this point in my life without a whole lot to show for what I really want to be doing with myself. But that’s not going to change anything. It’s not a good use of time. Now I feel 1000% more focused on what I want to do with myself, what I want to do with my time and my energy. And the fact that I am no longer on constant edge, looking for the next adrenaline “bump” to get me past the pain and confusion I feel… well, that makes a huge difference.

I would not be here without my TBI recovery, and I am so grateful to everyone who has helped me along the way to get here.

It’s turned out to be an amazing day. And I have been taking time to chill out and relax. This is my third day “off” and I am enjoying it like nothing else. I have a few things I still need to take care of, but an overall sense of calm and “chill” has come over me, and I finally, finally, finally feel like I can truly relax.

I’m doing what I want to do — which is reading and writing and working on concepts and mental “constructs” that explain significant parts of the world to me. You might call it “thought experiments”. Or philosophy. But I haven’t been formally trained in philosophy, and when I read “the philosophers,” it just sounds like Woodstock jabbering away in a Peanuts cartoon.

What I’m doing is a more basic, fundamental approach to understanding the world, and it makes sense to me. It doesn’t rely on jargon and specialized terminology or catch-phrases to make its point. It’s just my breakdown of understanding about how things are put together, why they are the way they are, and what it means for me and others I know.

And it’s good. It feels like an actual vocation — a calling. And since I’m not getting any younger, I guess I consider this my legacy for future generations. Keeping things simple, and understanding the world in a clear and collected way. In a way, it’s the next logical extension for my recovery — challenging my mind to be calm, clear, and collected… and to eventually share what I have garnered. I still haven’t figured out how I’m going to share it, or with whom. For me, the main thing is the exercise, the work of it. The discipline. It feels good.

And I know it is helping my brain.

Speaking of helping my brain, I’ve started juggling again. I took a break from it for a few weeks, then I picked it up again, and I am actually better at it than I was before. I was afraid I might lose my ability, but my brain’s new wiring seems to have settled in and solidified, and it feels good.

It’s all part of my recovery. It’s all related. I’m at a place now where I am actually — really, truly — enjoying my life, and my efforts now are focused on deepening my ability to do that. I have been struggling for so long, battling so much, getting hurt and having to recover… getting hurt and having to recover… dealing with my and others’ health issues… dealing with the upheavals of life… and always feeling like I was playing catch-up.

I don’t feel that way anymore. If anything, I feel like I actually know how to handle things — and that I WILL be able to handle them, come what may.  It’s a far cry from how I have felt for many, many years — probably ever. And I am enjoying myself immensely.

So, it’s back to my solitude. I am working on some ideas that have been on my mind, lately. They emerged out of conversations I’ve had with people over years and years and years, so who can say what my influences have been? Everything, I guess.

But anyway, enough talk. I hope you can find some time to enjoy yourself today.

And Happy Father’s Day to all you dads out there.

The shell-ter we carry with us

Our home is what we make it

One of my readers made a great comment over at a recent post:

I have come to recognise and realise, we people with TBIs need to embolden a special type of shell-fish (to otherwise be read as selfish.) The “shell” to house us from what would otherwise be attacks, accusations and allegations over being or feeling “bad” or that we may seem self-centered, any of our actions taken had very real and perceptive reasons and consequences.
Only when we debride a wound, or reach deep within residual scar tissue, are we allowed to uncover (very necessary to the healing process) healthy tissues.
A thorough study of the self amid the healing process, is a study in contradictions. The study of the self in TBI is, filled with cyclical change, growth, angst, beginnings. It is as though we are of two or more persons; walking through the situations in real time, taking the time to study, perhaps rehearse and may even attempt to resolve the consequences of earlier decisions.
Are these not the habits of people without TBI? Of course.
Therefore, the “shell” of being shellfish in TBI, may need to be a little more hearty and courageous, mayhaps even a little outrageous, to understand the absolute truth of these matters.

It’s very true. Like a hermit crab, we need to find shell-ter where we can, develop our defenses like a protective shell, and learn to carry it with us, as we go through life. No one else can know 100% what we are going through, so we need to develop our own defenses, our own sense of self, our own techniques and tricks to get us by.

I was just thinking about this yesterday — how I can basically make it through most situations in life without alerting everyone to the fact that I am struggling so terribly at times. My memory fails me.

The noise is too loud, the lights are too bright, and I have deafening ringing in my ears.

I am in pain.

I am off balance, struggling with vertigo, feeling like I’m going to lose my mind with having to keep upright.

Or I am boiling on the inside and fighting back my intense desire to either run screaming from the building or punch someone in the face.

Or I am dying inside, feeling like I am just not keeping up, and I have no idea what is going on in the conversation I’m participating in, even though it really matters a lot that I keep up.

I can get through those situations intact, because I have a shell of collected tactics I have built up over the years. Some of them I’ve been using a long time, while others are fairly recent.

But whatever their source or “vintage”, they work.

They keep me safe. They are not me, and they are not something I want to have, but I lost my “real shell” a long, long time ago, so I make do as best I can. And it works.

That’s the main thing. My internal state changes frequently, often without making any sense to me. It’s usually connected to my physical well-being — when I get tired, everything gets harder, and I am tired a lot of the time. So, I have to have a way to offset that effect, so my life can continue.

It’s not easy. It’s pretty painful at times. And it takes a lot out of me. But it works.

And that’s what really matters.

It’s bad enough that I have these issues. But having them screw up my life at the same time? That’s no good — not if I can at all avoid or prevent it.

And so I do.

Onward.

 

The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

  • confusion & disorganization
  • anxiety
  • irritability
  • neck, back and joint pain
  • noise sensitivity
  • dizziness
  • ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

Picking my battles carefully

Save your energy…

So, this week has been interesting. I’ve been working very long hours (12-14 hours a day), trying to clean up a lot of outstanding tasks that are months late. In the past, it made me crazy to be late on anything, or to fall short on anything I undertook. It just wasn’t allowed – and it worked out in favor of my standard of living, because nobody loves an overachiever more than a company that knows how to put that OCD impulse to good use to make a lot of money.

I’ve done well by my employers, if I say so myself. And before my TBI in 2004, I’d long been in the habit of never tolerating anything less than my best effort. I was always locked on target to continuously out-do myself, no matter what. But then I fell down those damned stairs, and things started to unravel. So much fell apart — slowly and quickly — and before long, I was just happy to be getting through the day.

One of the toughest things about my TBI after-effects, is having to deal with sudden onslaughts of all sorts of mediocrity. I was in a meeting the other day, discussing a project that I was doing a very poor job of managing. The whole thing had just gone off the rails, and I was a little freaked out about the whole thing. In this meeting, we were trying to come up with solutions about how to handle things, and I was getting very turned around and confused, not connecting the dots, and generally not representing very well.

It was pretty disconcerting for me. I’ve long been accustomed to being one of the “with it” people in the room, but that day, I was definitely not. So, I stepped back and just let the other folks who were with it talk amongst themselves and come up with a better solution.

And it worked out okay. We finished the meeting on an up note, and I got some new ideas about how to fine-tune the way I work with other people.

It just wasn’t a very good feeling, to sit there all foggy and clueless, not following the conversation and not being much help at all.

I hate this kind of chaos. I feel stupid and dense and impaired. Right now I’m feeling pretty impaired, actually, because I am tired, I am stressed, and I need to start working on some of my take-home tasks in a little bit. I need to hammer out some work before the weekend is over — and my spouse is inviting company over tonight, to stay into tomorrow, which takes a bunch of productive hours away from me in the morning. Shit. Oh, well. Welcome to my chaotic life — that’s just how it’s been, lately.

Actually, now that I think about it, the chaos has been ongoing since before the holidays — since before Thanksgiving time, when the holiday scheduling difficulties started to happen. So, since around the middle of November, things have been up in the air, and I’ve just been treading water, trying to get things done, to precious little avail. Three full months of uncertainty and scheduling problems, holidays and travel and jet lag and exhaustion… and more.

It’s just sucked so terribly, it’s unreal.

It’s almost as if the people who are in charge of setting the stage just don’t give a damn about whether or not anything gets done. It’s all on us to “manage” — and if we can’t keep up and can’t meet our goals and get everything done that we need to get done, well, it’s on us. Nobody seems to care anymore if things are actually done.  Nobody actually seems to care if things are left half-baked and fraught with uncertainty. It’s almost as though nobody cares about actual quality, as long as the “experience” people are having is acceptable.

Maybe I’m old-fashioned, but it seems to me that something should actually get done, every now and then.

I feel a rant coming on, but I’m going to step away from that, because it’s not worth it.

And here’s the crux of it all — I’ve been picking and choosing my battles, figuring out what matters most to me, and focusing on that, and letting the rest of it go. Some things I just can’t afford to get worked up over — things like sitting in a meeting and not feeling like I’m actually following everything that’s going on… or falling short on one project after another, and yet deciding to not get crazed about trying to keep up…

It’s best I concentrate on focusing on the good that I do have, and leaving the rest of it alone.

My time is much better spent on figuring out what I want to do with myself, and how good I want my life to be, instead of bitching about how bad things are right now.

It’s funny — I’m reaching a slightly different perception of my employer, these days. They keep taking things surveys at work asking about how people feel about working there, and every year the scores come back lower and lower. It’s kind of sad, that there are so many miserable people working there. At the same time, though, I think it has a lot to do with the character of the people working there. The fact of the matter is, we are responsible for what we make of things. All of us at work can make our situations into anything we want or need. We’re not helpless victims, and we have the power to control our attitudes and our gratitude.

And it occurs to me that maybe the problem isn’t so much that I’m working at a terrible place. Maybe the problem is that I work with a bunch of whiners. Thousands of them, in fact. They do a lot of bitching and complaining about just about everything under the sun. And I get really tired of hearing them bitch and complain about every little thing. It’s really up to us, to make things right — not to expect someone else to come along and fix it all for us.

At some point, you’ve gotta start acting like an adult.

I mean, geez, if people knew half the crap I have to wade through, just to get through the day, they’d probably run screaming from the building. But when you have to deal with it, you have to deal with it. The pain, the confusion, the fatigue, the emotional roller-coaster, the constant ringing in my ears, the unpredictable coordination, and this brain that just loves to crap out on me at just the wrong times… it’s just how things are, and I have to deal with it.

So, I’ve got a lot on my plate. And I have to pick and choose the battles I fight. The fact of the matter is, I am working with less working memory capacity and some pretty significant attentional issues, so if I get all worked up over things and I spend all my energy fighting against stuff that’s not going to change from me getting bent out of shape… then I just hurt myself. And I don’t want to do that. Getting a handle on what I can change, and focusing on fixing that, rather than spending a lot of time and energy beating myself up over things that are already done and can’t be undone, is a much better use of my time and energy. And it pays off in very big ways.

This weekend, I’m battling a bunch of backlogged work that I need to sort through. I’ve got so much to do, it’s crazy — and it’s all sorts of work, both tactical and strategic. So, no, I can’t worry about sitting in that meeting, earlier this week, and losing my place, not following what was going on, and getting turned around. Screw that. I don’t have the time. I’ve got to put my focus on other areas where I can be sharp, and I can be reasonably sure that I will make progress. Fine points like doing math on the fly and seeing quickly how a bunch of different moving pieces are put together… those are definitely not my strong suit when I’m stressed and exhausted (which was all last week — no, the past three months, actually). I just can’t let that derail me — I need to find where I can make up for those gaps, and concentrate on that — like just plain getting things done in the quiet and comfort of my own home. Like looking at bigger picture pieces of the grand puzzle.  And keeping my motivation high and intact.

So I’ll be taking a lot of time this weekend to just settle in and do the work that’s in front of me. It’s not terrible work — I actually enjoy it. There’s just a lot of it, and it’s really disheartening to be so far behind… and have people at work complaining about it, too.

So, off I go. Got lots to do, and I’m feeling pretty good about the idea of having it all done.

Onward.

Everything that makes up the day

It’s not always clear

Today’s Fog Factor: 70% “with it”

Well, I’m glad I had a nap yesterday. I got a little less than 7 hours of sleep last night, but I got right up, a little after 6 a.m. I really wanted to get into the day — get my exercise, eat my breakfast, and get some writing done before I get into my full-time packing.

I started to get a headache when I was riding the exercise bike, and now my head hurts. I am supposed to get headache specialist info from my neuropsych, but they never got back to me, even though they promised. This isn’t the first time they’ve forgotten about me. Ah well, I may be better off taking care of things myself. I would like to see a neurologist or someone who can tell me if it’s a structural issue with my brain, or if it’s more about my neck and my stress level. I start to get a headache when my spouse is going on and on about some drama at work, so I’m guessing that it’s a stress thing — at least in part.

I guess I need to get back to my meditation exercises again — just training myself to keep calm in the face of whatever comes my way. Things at work have been intense, and that’s not helping. I need to improve my skills at handling what comes down the pike – no matter what that may be.

I did a little bit of writing and reading, this morning, and I’m about ready to start packing my bags for the trip. I need to collect my clothing, do some laundry, and get my pieces all squared away. I have a list of things to do and take care of.

I’ve got about 7 hours before I need to leave for the airport. I have to check in when I get there – I can’t check in online, unfortunately, which puts a real crimp in my plans today. I need to give myself an extra 30-45 minutes, so I’ll need to leave the house earlier than planned. I need to review my list of everything that needs to be done, so I don’t miss anything.

With any luck, this will be my last trip in a while. They are cutting down on travel at work, so that could relieve me of the constant pressure to get ready to go away, and then recover from coming back. What a waste of my precious — and very limited — energy.

I really just want to devote as much time as I can to my own projects and not have my job take over my life, as it has in the past. It’s bad enough that it already consumes so much of my time and renders many other hours pretty much useless to me — because I’m so tired.

I’m making the best of things, of course. I’ve given up fighting it, and now I’m just going to get into my day and live it as fully as possible, whatever comes down the pike. Whatever the day brings, I need to be fully involved in it – not just up in my head, and not standing at a distance. But in it.

This is really the thing that saves me in my TBI recovery — being involved in my life – up close and personal – and not letting setbacks keep me from making progress. There is so much that is a lot more difficult for me, than I’d like, and I really hate my life, some days. I think back on how things used to be, and everything now just feels so strange and foreign. Things used to feel like they flowed. I had what I thought was a very fulfilling life, with hobbies and pastimes that really gave me a sense of belonging. Then I got hurt, and everything changed, and getting back to some semblance of normalcy — at least feeling like there’s some semblance of normalcy — has been a daily challenge.

Now, though, it’s feeling more “normal” to me, and I’m finding my way back to things that used to be part of my everyday life. Reading. Writing. Being active in my community and having friendships to fall back on. TBI can be so very alienating, because of the personality changes — people who used to like you for who you were, no longer have that same person to like. So naturally a lot of them move on, because you’ve almost broken a promise to them about being the kind of person you are “supposed” to be.

Also, your tolerance for the way certain people are can change a great deal. I noticed that in my own life, a lot of the “endearing” characteristics of other people, which I could accept and gloss over, became glaring points of conflict with me. And I became a lot less tolerant of other people’s flaws and foibles, so I couldn’t bear to spend waste more time with them.

As an example, I used to hang out with a lot of people who had a real victim mentality — like all the world was against them, and they had to constantly struggle against the dominant paradigm to just break even in their lives. I used to hang out with a LOT of escape artists — devotees of role-playing games, computer games, renaissance faires, comic books, and other alternative culture types. That was my world — all full of arts and music and imagination. But it became pretty apparent to me, after I got deeper into my TBI recovery, that so much of that was a convenient way to avoid dealing with harsh truths about oneself, instead of taking action to make right the things that were all wrong.

And I realized, too, that so much of the world that my friends thought was out to get them or designed to make their lives miserable, was a result of how they were thinking about those circumstances. They kept telling themselves that “the mainstream world” was designed to destroy them, and they were in a constant state of conflict and antagonism. So, small wonder that they couldn’t get ahead in life. They came across as angry and aggressive with everyone who wasn’t just like them, and they boxed themselves into a version of life that only existed in their minds.

And because I realized more and more, just how much of what they believed was originating within them… and I saw how much that was costing them, in terms of time and energy and positive living… I just couldn’t spend a whole lot of time hanging out with them anymore. That, and the fact that I was so wiped out after working all week, and I just needed to have time to myself to regroup and recuperate. I just couldn’t stand their bitching and moaning and blatant assumptions about life, which only served to get in their way.

The world wasn’t the problem. THEY were the problem.

And so I dropped a lot of them and I’ve gone my own way.

It’s been kind of lonely, to tell the truth. It’s tough to connect with other people like you, when you all have so little energy to spare, beyond basic survival. And the people I’ve tried to stay friends with and tell about my TBI issues… well, they just weren’t having it. They were so convinced that “there’s nothing wrong” with me — and a lot of them still are. They can’t see the internal issues I have to deal with, each and every day. They can’t see the struggles, the pain, the frustration. There’s not much point in trotting them out for others to see, because they just get nervous if they don’t know what it’s like. And they don’t know what to say.

So, it’s complicated. And it’s challenging. But in reality, is sustaining a TBI and not being able to shake the symptoms really that different from any other kind of loss? Losing your home, or your marriage, or a child, or a loved one, or a job? Or any other things that make up part of your identity in the eyes of others? People fall out of your life, they move on, they don’t know what to say to you… and sometimes they are never replaced. I think it comes with life. And getting older. And realizing who you are and what you will — and will not — tolerate in your life.

So, while I have a lot fewer friends in my life, and my activities have really pared down to the most essential of activities, and I’m not nearly as social as I used to be, that’s all fine. Because I’m fine.

I’m fine with how my life is now. I’m fine with things being so much quieter, and having a lot more time for the things that matter most to me. I’m fine with not being surrounded by people who are convinced the world is out to get them. And I’m fine with what the day has to bring.

Because being in the midst of my daily life — all the little details, as confounding as they can be — and experiencing it all, fully alive and engaged in my own life, is what brings me back to myself.

For many years after my various TBIs, I held back and was off by myself in a world of my own inventing, like so many of my ex-friends. And I didn’t really let life in. It was safer, but it was no way to get myself in shape to live my life. I avoided a ton of experiences, because they were too overwhelming or too confusing for me. And I thought I could avoid all that and prevent the anxiety that came with it.

Now, I generally accept that I’m going to get confused and overwhelmed, and I can plan for it. I expect it. So, it’s not such a terrible thing. It’s just one more aspect of life I have to manage. And so I do.

All that the day brings — all it has to offer — it’s there for me.

Now, what shall I do with my life today?

Let’s find out.

Onward…