Sleep, work, eat, live… rinse and repeat

Get the right stuff — to your health!

I was flying solo last evening, moving at my own pace and enjoying having the house to myself. I watched a bit of t.v., then realized what a huge waste of time it was. I hate watching t.v. alone. So, I got online and started doing some research. One thing led to another, and eventually I looked at the clock and it was nearly 1 a.m.

And here I’d planned on getting to be early…

Well, it’s no biggie, because I took care of most of my chores yesterday, so I would have today free. I have a full day ahead of me, pretty much wide open without a lot of stuff I have to do. I’m thinking of taking a long walk. I exercised this morning on the stationary bike. Worked up a good sweat and got my blood pumping. That was helpful.

Yesterday was a pretty good day. I got some work done around the house, I went for a short bike ride, and I had a nice nap in the afternoon. I could have slept longer, but I didn’t want to wreck my sleeping schedule by sleeping too long.

We see how that worked out.

In any case, my goal today is to stay active enough this morning to tire myself out early this afternoon and have another nap to make up for the lost hours — and not sleep so late in the day that I wake up at 7:30 like I did last night.

That clearly does not work.

I’m also looking forward to lying in bed and reading. I’ve really gotten into a lot of reading, these days, now that I can. I’ve missed it. And I’ve also missed being able to read narratives — fiction and real-life. For years, the only thing that held my attention was scientific papers. That’s fine, if you’re a scientist and understand everything in them, but I’m not — and I didn’t. At least it was something to read. And I was under the impression that I “got it” in some way.

Whatever. It did me a lot of good. It got me reading in small chunks that seemed to make sense to me, and that were informative and very motivating.

Now I’m reading fiction. I read while I’m on the exercise bike — it gets my mind off how incredibly BORING riding an exercise bike is, plus it gets my brain engaged, along with my body. I’ve been able to ride longer and also read more, thanks to this combination. It’s really a brilliant solution to what can be prohibitive. Plus, I’m reading real-life stories (or fiction that’s based on real life), so there’s a reason for me to pay attention to what I’m reading.

I’m learning a lot in the process — mainly about how people go about their everyday lives in foreign countries. It’s like a vacation from my current life, which is really a nice break from that crazy old global deal I used to be in. I don’t have to be on European AND Asian time zones all the time, but I actually miss the variety… So, I read about those places, watch Anthony Bourdain, and think about cooking food.

I’m seriously considering taking up more active cooking. I do most of the cooking at home, because my spouse isn’t up to it. And over the past years, it’s been pretty much maintenance cooking — just getting the basics on the stove, with reliable, predictable, dependable recipes that don’t have a whole lot of excitement to them.

I think I need to change things up a bit — especially because it now feels like I’m/we’re just eating to get food in our stomachs, rather than really enjoy what we’re eating. I need some different tastes, and some different textures. I also need us to eat a wider variety of fresh vegetables. It’s summer, for heaven’s sake. Now is the time to get fresh fruits and veggies. The more organic, the better — the less chemical taste to them, the better, that is.

Food is becoming my favorite vice… or rather my salvation. Cooking does wonders for my sense of timing and pacing — my sequencing — as well as my frustration tolerance. On top of it, when done properly, a well-cooked meal feeds all the senses, which is incredibly good for the brain.

It’s the kind of activity I can really get behind. It does the body, brain, and spirit a whole lot of good.

Time to make a shopping list…

Doing AND Enjoying

One of the things that has really become clear to me over the past several years, is that being functional is not enough for me. I need to do more than live my life — I also need to enjoy it.

What has also become clear to me, is that the more I enjoy what I’m doing, the more I engage with it — the stronger the positive impact it has on me and my brain.

So, enjoying what I’m doing is actually a big part of my TBI recovery.

I have to say that enjoying what I’m doing while I’m doing it has helped me turn the corner from a plateau I was at, a couple of years ago. I was making good progress, and I was rebuilding a lot of the kinds of self-regulation skills that went out the window when I fell in 2004.

I was better able to manage my temper, I was better able to manage how I behaved when I went through extreme ups and downs. I was better able to interact with other people. And my functioning at work was really on the up-swing.

But I felt like I was at a plateau. I just didn’t feel like myself, and I didn’t feel like I was making any more progress.

I might have been — and in fact logically I really was convinced that I was still progressing — but it sure didn’t feel like it.

For a number of years in my TBI recovery, I had beenreally locked in on an ultimate goal of being as brilliantly functional as I could be, including taking my performance to the next level and really “kickin’ it” to the highest point I could possibly reach. But I had hit a few plateaus along the way, and the experience had not been great at all. I had struggled with it so much… but ultimately through no apparent doing of my own, those plateaus had dissolved, and I was on to the next piece of progress.

So, I decided to just forget about it, and just enjoy my life. I figured, if I was going to be on a plateau, I might as well have some enjoyment out of it, instead of just mindlessly laboring along — seemingly in vain — and chafing over my lack of progress.

I also suspected that deliberately deciding to enjoy my life would kick-start something in my brain. I would take in all the sights and scents and tastes and experiences around me (as much as possible, given my limited energy and difficulties with my sensitivities). I would really see how much I could enjoy them. And I would stop, when it got to be too much for me. I would change my focus and approach, and my brain would adapt in completely new ways. I would forget about the same old working-working-working, because I had been doing exactly that for years, and I still got to a plateau, anyway. My brain clearly needed a variation from all the same kind of work.

I also figured my system needed a break, period, to rest and recoup and integrate all the new skills I was trying to build.

But most of all, I just wanted to enjoy my life. To fill it with happiness and joy in the little things, each and every day. I have been working so hard for so long. I needed a reward.

I can’t say that I’ve been particularly successful at stopping the working. I have a strong work ethic that isn’t going to quit. But when I consider enjoying my life to be a type of “work”, then I can do it. Then it makes sense.

My TBIs have cost me dearly in my life. I really resent every single one of them, because I have the sense that every time I got hurt (about 9 times, starting near the beginning of my life), it set me back a little bit, and took me steps farther away from my dreams. Each successive mild traumatic brain injury had a larger and larger impact on me, and even though they were supposed to be “mild”, the after-effects were anything but mild.

So much pain, so much suffering… not only for me, but for everyone around me…

And that pisses me off.

So, yeah, I’m going to want to work my a$$ off to overcome this. And as it turns out choosing to enjoy my life, to take in the senses of the world around me, helps me do that in a new and different way. Choosing to listen to the birds in my back yard, smell supper cooking on the stove after a long day of work, feel the light brush of ferns against my legs as I walk in the woods, sense the unevenness of the ground beneath me as I walk along my road… it all gets me to pay attention beyond the racket in my head, and it trains my brain to sort through all the different inputs… and also to relax.

Pressure and stress are terrible for TBI recovery, and anything we can do to limit them is a good thing (within reason, of course).

As it turns out, taking the pressure off and just enjoying my life has really kick-started parts of my brain that have been struggling for a long time. I’m reading again. I’m thinking in much better patterns again. I am doing better at dealing with people.

And that’s good.

Onward.

Now past 250,000 views on this site

Thanks for listening Thanks for listening

I just checked my stats on this blog, and as of today, I’ve had 265, 363 views. I’ve been meaning to check my stats more frequently, because passing the 250,000 reader mark has been in the back of my mind.

But I forgot.

No surprises there. If I’d really wanted to remember, I should have written it down, but I have been pretty wrapped up in living my life, so I haven’t spent much time looking at web metrics.

By far, the most popular post was about how I slow my heart rate. Over 25,000 people have viewed that. Whether they read it or not, who knows? But it showed up in their browser. After that, it’s the piece about the vagus nerve. That’s been viewed almost 10,000 times. And after that, people get into the concussion and TBI writings, with a lot of interest in what I’ve written about anger. Whether they were interested in anger only, or anger plus TBI, is anybody’s guess.

But the bottom line is, there have been a lot of people stopping by, so thanks everyone for giving me a great reason to keep going with this blog.

I started this whole thing back in 2007 because I wanted a record of my recovery, and I wanted others like me who felt incredibly alone and isolated to have a place to come to hear someone else share about their experiences with TBI. Actually, it’s all pretty much about life as most of us experience it, TBI or no. My perspective just happens to include a “neurodiverse” aspect.

But then, all of us feel different and deficient in some ways, I guess. Not everyone has something to attribute it to, so in that respect, maybe I’m a little lucky.

Anyway, it’s another beautiful day, and I’m going to get myself outside and WALK. I had a good workout this morning — really pushed myself harder than I have in the past, and now my arms and shoulders and back are tired, which is good. I’ve been working on a bunch of different ideas that are all keeping me occupied and keeping my head from working against me.

I have really been struggling lately with these subtle feelings that I’m just not as “with it” as I’d like to be. I’ve been forgetting things at work, which depresses me to no end. But I can’t let it stop me. I have to keep a positive attitude and remember that everyone forgets things — the people I work with tell me all the time about how they forgot things. And they’re sharing the strategies that they use. My boss is highly experienced and has been doing very high-level work for a long time, and they gave me some great pointers. I’m really lucky to have them as a boss, that’s for sure.

But listen to me… going on, when I really should be out on my walk. I’ve got lots to do today, and I’m feeling good. Keeping busy with productive activities keeps my mind off this persistent feeling that I’m not “myself” and I’m lagging in some way. I’m actually re-building my life, bit by bit, and that includes my understanding of who I am and where I fit in the world. This is not small work.

But I’m doing it. Because it’s the one thing I can do to really help myself just get on with it.

So… onward.

Who am I today?

Summary / Bottom Line

I don’t feel like myself, these days. I haven’t felt “like myself” in a long time. And all the hopes and dreams I once had as a kid, seem so far from me. But maybe, just maybe, I am truly living my hopes and dreams… I just don’t feel like I am. And that changed sense of myself is keeping me from realizing how much my life really does resemble my onetime hopes and dreams. Restoring a sense of self can be a huge challenge with traumatic brain injury, and adjusting to how things truly are, versus how they appear to be, or feel, is one of my biggest challenges.


I’ve been thinking a lot, lately, about my identity… who I was when I was a kid, who I am now, and who I’ve been along the way. I recently had a birthday, and while I don’t feel like I’m having a mid-life crisis, I still have been thinking a whole lot about whether I am where I expected / hoped / planned to be, when I was younger.

I know that “life happens” and we can end up very far from where we wanted to be when we were younger. And to be honest, I’m not even sure if I had specific plans about the trajectory of my life, when I was younger.

I do know that what I wanted more than anything, was to become a scientific researcher. I wanted to go to school to get a bunch of degrees, and then focus on research. I’m not sure what kind of researcher I wanted to become — I just wanted to study, collect information, synthesize it, and publish it.

I also wanted to be a writer. Maybe more than being a researcher. Being a writer is what I always wanted to BE. Research is what I wanted to DO. In a way, being a writer is like being a researcher – it’s not the same type of science, but there’s a sort of science to it — observing, drawing conclusions, testing your hypotheses, etc.

Over the course of my life… well, life happened. I got hurt. A bunch of times. I fell and hit my head a bunch of times. I got in car accidents a bunch of times. I was attacked. I did stupid things. And I got hurt. I also had a lot of chronic pain that knocked me out of the running when I was in my early 20s. And I got in trouble with the law and some rough characters, and I had to go on the lam when I was in my late teens, which limited my future prospects.

Now, looking back, I see how so-so-so many opportunities have been out of reach for me, because of everything that happened back then. I have done my best to patch things up over the course of my life, and relatively speaking, I’ve done extremely well for myself.

But am I really where I want to be today?

I’m not sure. This life I’m leading doesn’t look and feel like I hoped it would. It feels strange and foreign to me. Hell, I feel strange and foreign to me. I feel like a stranger to myself, half the time. I don’t have that feeling of being “comfortable in my skin” that people talk about.

Now, I used to have that feeling. I used to have a clear sense of who I was and what I stood for. And I didn’t let anyone hold me back. Even when I was getting in trouble with the law and then went underground, living overseas till things quieted down here, I had a clear sense of who I was, and what I stood for. I had to change my life for a while, and I couldn’t do a lot of the things I had once enjoyed doing — like going anywhere I wanted, whenever I wanted. But it didn’t feel like I’d lost a part of myself. I’d screwed up for sure, but I was determined to fix things.

When I was in all that crippling pain, 25 years ago, I had to let go of a lot of activities that had once meant a lot to me. I had to stop exercising and spending time outside in the sun. The diagnosis that the doctors came up with was probably wrong (I never had tests that confirmed or denied it 100% — they didn’t have good tests, back then). But I had to take steps in any case. As it turned out, the things that I was told not to do — exercise a lot, move a lot, test myself physically — were exactly the kinds of things that I needed to do to alleviate my pain. Movement and staying active was NOT going to hurt me. Being sedentary was.

In those years when I was dealing with the pain, I lost of lot of things that meant a lot to me. I couldn’t eat and drink the same things anymore, and I couldn’t do the things I wanted to do. But I didn’t have a sense of having lost myself. I was still who I was, and I was clear about that.

Now things feel so strange and foreign to me. It’s hard for me to describe. Even though I know I’m doing better, and I have numbers and feedback from friends and family that indicate I’m improving, I still don’t feel like myself. It’s hard to describe — just that someone else seems to have taken up residence in my life.

I know my personality has changed a good deal, since my fall in 2004. And it kind of freaks me out, because that wasn’t the first mild TBI I’d ever had. I’ve had a bunch — probably about 9. I’ve been assaulted once, had at least 4-5 falls, got hurt a couple of times playing soccer, got majorly dinged while playing football, I’ve had a couple of car accidents, and so forth. But not until I fell in 2004, did it totally screw up my life.

Not until the past years, have I felt like a stranger to myself.

It’s kind of getting me down, too. At least, it has been. I try not to think about it, but it’s still always there… Who am I today? What am I going to do today that doesn’t seem “like me”? What am I going to feel and think and say and do that doesn’t seem consistent with the person I know myself to be?

That feeling of observing yourself going through life… it’s weird. Disorienting. I resolve over and over again, to hang in there and just keep plugging, until I see some glimmer of who I am. And sometimes it works. I’ve been feeling more like “myself” lately, which is nice. But at the same time, I don’t quite trust it. Like in Flowers For Algernon, when the main character stops taking the medicine that made him think and act like a normal person… and he drifts back into his old state. Whenever things are going well for me, I feel like I’m looking over my shoulder for signs that I’m slipping back into not recognizing myself.

I would like to stop this. It’s not fun, and it’s not productive. It serves no one, and being on high alert over it just kills my quality of life.

So, over the weekend, when I had time to think about it, I realized that maybe it would be better if I just acclimated to this feeling and let it be. It could be that I actually am getting back to my old self — I just don’t have the sense that I am. It could be that I’m even better than my old self. There’s a good chance of that, because my old self was majorly concussed and had all sorts of issues that I didn’t even realize. It could be that I’m in better shape than ever before… but I don’t have the sense of it being so, and therefore I don’t trust it.

I don’t feel like I’m myself, most of the time. Maybe all of the time. But maybe I actually am. Maybe the missing piece is NOT my personality and my identity, but the sense of my personality and identity. Just because the sense of being who I am isn’t there, doesn’t mean I can’t BE there myself.

Rather than getting all caught up in recreating that sense of myself, maybe I need to just get on with living, regardless of the sense of myself. Maybe I just need to trust it… not place such high demands on what qualifies me as me, or not-me.

And maybe — just maybe — the life I have now is exactly what I was hoping /expecting / planning / dreaming I’d have, back when I was a kid. Looking around at my study and thinking about how I live my life, I realize that I am doing exactly what I always wanted to do, when I was younger — reading and researching and writing and publishing. I write and publish this blog. I read and research TBI-related materials (especially concussion and mild TBI) and I spend a lot of time thinking about them.

I also read and research other subjects and write about them, though I haven’t published much of that … yet. I am getting to a place where I soon will, and then I will have that to my credit, as well. This is all done independently, according to my own standards. I’m not doing it professionally, but I have managed to help some people, here and there along the way. That much is clear from the comments on my blog.

So, even though it may feel like I’m one person, the objective facts reveal something quite different. And for me, it seems the challenge is to not let feelings of weirdness and alienation and failure stop me from just getting on with my life.

At some point, I just need to trust. I’m working on it.

Onward.
 

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.

nueropyshc test doesn’t detect brain injuries and accused of malingering

Image

Not all doctors are interested in helping YOU

Someone found my blog the other day with this search term.

Everyone who is affected by brain injury should know that some neuropsychs are hired by insurance companies to detect fraud, and their tests are geared towards proving you’re malingering, rather than helping you get past your issues.

On the other hand, some neuropsychs are just not very good. Simply because they have “neuro” in their name and/or have an advanced degree does not mean they know their ass from their elbow.

And then again, some of us with brain injuries are so adept at disguising our issues — for fear of being mistreated, from past experiences of being mistreated, or from just knowing how to get along in the world to everyone else’s satisfaction — that some tests don’t pick up our issues.

And finally, sometimes the issues we experience from brain injury are very subjective — not feeling like ourselves, not having the same types and kinds of abilities as before, feeling like strangers in a strange land (though that’s not unique to brain injury alone), and struggling to do things we used to do even though it looks to others like we’re doing them just fine. We know there is something “up” with us, and we know we have deficits we need to overcome.

But heaven help us if we can actually manage to communicate this to others, or demonstrate it to others.

IT IS HARD.

And it oftentimes sucks.

It’s bad enough that brain injury kicks the stuffing out of you… but then the professionals who are actually sworn to help you, turn their backs in you?

That doesn’t make things any easier.

I wish to God I could fix this. But I can only fix what’s right in front of me.

So… onward.

My computer is brain-injured, too

I’m not the only one having troubles, these days…

Yesterday, when I tried to work on my computer, it was much slower than I expected it to be. It seemed really sluggish and took forever to respond (“forever” meaning a second longer than I’m accustomed to). And it kept having to stop to download patches and updates from the anti-virus program I have.

It was so frustrating. Its processing speed was so much slower than I wanted it to be, and no matter what I did, it couldn’t seem to go faster.

How frustrating! It’s bad enough that I have to deal with my own brain-injured system, which is so much slower to respond than I want it to be. It’s bad enough that I myself have to keep stopping to check in with myself and “download” more information about the world around me, so I can get my act together to take the next step. It’s bad enough that I’m so sensitive to fatigue and excitement and, well, life, and that I can’t seem to participate at the level I want to, except occasionally.

But my computer? Now I can’t depend on it, either?

Arrrrgghhh!

I try to be patient, I try to extend my laptop the same consideration I extend to myself, but it’s pretty frustrating. I’m very careful about what I download and install on my machine, and I do cleanup pretty frequently, removing files and then fixing the disk, compressing, and defragging. All in all, I’ve kept this machine going a lot longer than most people do. I’m very frugal with my resources, and I take care of what I have.

So, when nature takes its course and things start to break down a bit, here and there, and I start to think about spending extra money and time on new (to me) equipment, I get nervous. Because I remember all too vividly what it’s like to be in hock, to be so far in debt that my whole live is an exercise in indentured servitude.

I really don’t want to have to spend any more money than I have to.

But it’s not just the money that gets me. It’s the reminder of how things are sooooo sloooooowwww for me, sometimes. I tried to get some more work done last night, after I made myself some dinner, but I couldn’t get myself in gear to make any progress. It’s just as well. I needed to take a break, do some reading, and let everything just kind of sink in. Plus, the book I’m reading is pretty interesting, and it really held my attention all night, till I couldn’t concentrate anymore. But still. I want to be able to do the things I used to be able to.

Once upon a time, I could spend every waking hour of Saturdays and Sundays working on my research projects, and come away with some really great insights. Once upon a time, I could study for hours, learning new computer skills, and be more proficient on Monday morning than I was on Friday afternoon. Now, I consider myself lucky to get to Monday without being more exhausted than I was Friday afternoon.

I had kind of expected things to get better for me, as my recovery progresses. Things are getting better in some respects:

  • I can read again
  • I can hold conversations with people
  • I can keep from blowing up over little things that don’t matter
  • I can recognize when I’m going off the rails and take steps to get myself back in line

But the fatigue and the confusion and the sense of “WTF?!” that has me always wondering, What Just Happened?… that hasn’t really subsided. If anything, it’s worse. Perhaps because I’m more aware of it. Being able to recognize when I’m going off the rails, means I’m more aware of my “deviations” from what I consider the norm for myself. And I have to tell you, it is truly bizarre, to be living life inside my experience, which doesn’t look, sound, or feel anything like what I expect it to.

The one constant through my recovery has been my laptop. My computer, which is now struggling to keep up. Having that go on the fritz is making me all the more aware of my human frailty and vulnerability, and I don’t care for this experience.

I don’t care for it at all.

But here it is. There’s no escaping it, and I suppose the best I can do is just acclimate to the “new me” and get over it. Quit bitching and complaining, suck it up, and just deal with it. People go through losses all the time — friends, family, marriages, homes, jobs, mental and physical abilities, body parts, even their sanity. I’m not unique in this respect. I’ve lost touch with the person I feel like I am, and I miss them. I miss feeling like I know who I am and where I fit. I miss feeling a sense of orientation to life around me. I miss feeling like I know what will happen in my head next. I miss it. Sometimes it’s there, but then when I expect it to be there, it’s nowhere to be found. And I’m adrift again, making it up as I go, doing my best under the circumstances, just happy to be alive and healthy.

I do feel a little foolish, being so bent out of shape about losing my sense of self, but there it is. A lot of us go through it, especially brain-injured folks, but I don’t know about anyone else. Not really. And for me it feels so intense today. Part of the problem was that I really isolated yesterday at home. I didn’t get out much, and although I talked to my parents a couple of times, I didn’t have any live interactions with people. If anything, I avoided them. Because I was tired, and I just wanted to be alone to think.

Someone recently commented here that socialization is a huge piece of TBI recovery, and I totally agree. I didn’t think it was so, but it is. Socializing both challenges us and rewards us. It gives us a chance to interact and acquire new skills. It forces us to think on our feet and make an effort. But when you’re struggling with TBI, socializing can seem like too big a task to undertake.

I know it did for me, yesterday. Everything just felt like such a chore, such a drain. I didn’t want to go out, I didn’t want to talk to anyone, I didn’t want to have anything to do with anyone. I was tired. I was feeling overwhelmed. I was not up for the added work that interacting with others brings.

I just wanted my computer to keep me company.

But it’s brain-damaged, and it was struggling almost as much as me, yesterday. So, there we were, the two of us, muddling through.

Today looks like another beautiful day, and I’ll have to get out for a walk. My water softener seems to be on the fritz, so I’ve re-cycled it, and I’ll go out and get more potassium chloride later. Potassium chloride is better for me than sodium chloride, because the treated water is a little harder, it doesn’t get “soapy” and slick, and it also doesn’t create that rotten egg smell that you can get from sodium chloride. It costs a few extra dollars per bag, but so what? Over the long term it’s more expensive, but it’s worth it to me.

I’ll do the few things I need to do today, make sure I rest up, and really take it easy. I’m still wiped out from last weekend. I’m not sure when I’m going to catch up on my sleep and feel truly rested again. But at least I can enjoy myself at some of the things I do. And I’m already looking forward to that nap.

For now… onward.

When bad things happen to good people

The road ahead is not always clear

The road ahead is not always clear

Oh, this is upsetting. My neuropsych is having potentially serious health issues, and we won’t be meeting next week.

The upsetting thing is not so much that I won’t get to meet with them. It’s that they are having health issues. Their situation is not certain. You like to hope for the best and stay positive, but with the healthcare system as it is, you never know…

I really got thrown for a loop yesterday. When I first talked to them to cancel our appointment, I was fine. I was feeling very positive and supportive, and I think I helped them feel better. I made them laugh a little, which always helps. Then I took a nap later in the day, and when I woke up, I was very, very sad. Because if something happens to them, so they can’t work anymore, I had the distinct impression that I will go back to being alone.

And that made me so sad, I started to cry. I hate when that happens. I suddenly felt so alone, so small and so vulnerable. I felt like I was five years old again, being left behind as the school bus going home pulled away from the curb, leaving me alone and not able to get back home from my first day of kindergarten. In the past six years that we have worked together, my neuropsych has really been the only reliable person in my life who has not judged me for being different, who has understood the challenges I’m up against, and who has really cheered for my advances, instead of just treating them like something I should have been able to do, all along. If I lose their regular presence in my life, it’s going to be a real blow.

I felt kind of crappy, feeling that way, because it was all about me. I’ve been working on that tendency to always think of myself first and not pay any attention to anyone else’s needs. But I’m also feeling upset that this is happening to them, because they are a really good person who has been on the business end of life’s cattle prod many times too often, and I hate that they have to go through this — especially as they are nearing retirement age, and no one should have to spend their later years in terrible physical condition.

I wish there were something I could do, but my neuropsych is a private citizen, and it would be inappropriate for me to try to contact them outside our clinical relationship. I feel very helpless – life is just doing what it’s doing, and I can’t really do anything to stop it. All I can do is adjust. And take care of myself.

I hate feeling selfish like this. It really bothers me, that my first thought is “What will happen to me?” I know that is not a reflection of my “highest self”. I am better than that.

So, I am doing something about it, and I am searching online for volunteer opportunities, to reach out and help others. I don’t want to be “that person”. I want to be better. I know how good it makes me feel to be reassured and assisted with things I don’t know about. I’m very independent, and having additional help from experts gives me some measure of reassurance I need, in the midst of what can be a very confusing and disorienting world. I have skills I can pass along to others who want to learn, and by offering others what I myself seek to have, that can get me out of my funk and keep the focus off me-me-me.

In all honesty, I need to be thinking this scenario through, anyway. My neuropsych is at the end of their career, and they’re not going to be practicing forever. I’m fortunate/unfortunate enough to have worked with them when they are at the high point of their professional practice, having spent decades refining their approach and having already had tons of experience with what works — and what doesn’t.

I’ve had the good sense to avail myself of their help when I’ve needed it. The thing is, I’ve done so much of my work by myself — and then checked in with them after the fact — that it’s not their guidance I rely on; it’s their assessment and feedback about what I’ve done and whether or not the result is what I was hoping for.

It’s been one big, fantastic science experiment, in all the best senses of the word, and I’ve really benefited. And to be honest, so have they. They’ve never directly told me the details about how my work has helped them, but they once mentioned to my spouse that it’s hugely encouraging for them to work with me, as I’m so intent on getting better and really putting in the work. They said that most of their brain injury survivor patients aren’t willing to do the work to really get better. How depressing that must be…

The working relationship has been mutually beneficial for sure. I know they’ve gotten better, themself, because the difference between how they are now and how they were when I first met them, is significant. When I first met them, they were much more tentative, spacy, and absent-minded. They would forget appointments with me, they seemed more hesitant in so many ways, and they didn’t have their act together with billing and business management details.

In the past six years, they’ve really stepped up their game, and I like to think that working with me has helped. In, fact, I’m sure of it. And the time when I went to meeting with them every other week, instead of every week, they seemed to regret not checking in with me each week.

I guess one of the things that’s kept me motivated over the past years, has been knowing that my progress was helping another person. Knowing that getting better myself was helpful to my neuropsych — which then made it possible for them to help others — has been a driving force behind my recovery. It’s not just about me. It’s about all of us.

This blog, too, has been a big part of my recovery, and hearing from folks that I’ve helped them, or they respond to things I write, has been a real boost for me in so many ways. My TBI recovery doesn’t just belong to me. It really belongs to all of us. I happen to benefit from it — and so do many, many others.

So, that keeps me going.

And I wish I could do more. I really do. There are so many brain-injured people suffering and alone and afraid, because of what’s happening inside their heads — and bodies — that they don’t fully understand. That goes for strokes, acquired brain injuries, and traumatic brain injuries, alike. We’re all a little bit different from each other, yet we have so much in common. And we need to focus on that commonality. The professional community stands to gain from divvying up our issues into different categories and disciplines, so they can mobilize their resources to address each aspect. But for those of us suffering from the symptoms and after-effects and ripple-effects of brain injury, this segmentation just makes things worse.

Those of us who have experienced brain injuries need to be connected with the larger world. We need to be involved in a community. And the way brain injury recovery is set up in this nation, is the worst way to handle things for us. It’s limited by insurance and the abilities and knowledge of people who are not adequately trained in brain injury issues, and who frankly run out of steam, because brain injury does such an unpredictable number on its “recipients”. Also, our loved-ones get the brunt of things, because they’re ultimately our last line of assistance, but nobody out there truly understands

Lord, we are exhausting.

So, those of us who can, need to do something about it. I have posted the Give Back training I downloaded to my site here http://brokenbrilliant.wordpress.com/brain-injury-association-resources/give-back-tbi-education-for-survivors-and-families/ I hope people will make use of it. The information has helped me so much, and I do need to go back to it… and I shall. With a fresh look, years after the first time I downloaded it and started to read it.

I have some other ideas about how to help… including more ideas for this blog. I’m getting a bit long-winded here, so I need to wrap it up… and also get on with my day visiting my family. I don’t get to see them that often, so I need to take advantage, and get on with my morning.

I’ll be driving back home later today — and it’s another gorgeous day — so I need to get my act together, get off my damn’ pity-pot, and make the most of what I have. Each and every day.

Onward.

A regular week — hooray

………………….Please do!

Well, I learned my lesson, last week. I worked extra hours to make up for the time I was missing when I took the day off on Friday. And it was not fun. I really enjoyed my three days off – it was bliss. At the same time, when I was at work, it was extremely difficult, and I don’t care to repeat the experience. I did enough years of 12-14 hour days, and it’s time for me to be done with them.

So, the next time I take a day off work — a week from today, when I travel to see family members I have not seen in several years — I am going to make up some of the time, but not all of it. Plus, I was given an amazing gift of two days’ pay, totally out of the blue. So, I have some extra wiggle room. And I’ll now have money for gas.

I’m settling into my routine, now. I get up early, I exercise and have my breakfast, then I read for a while and write and think. It’s heaven. I am thinking in a much more focused manner, nowadays, which is nice. I’m just focusing on getting clear, on simplifying my thought patterns, and fine-tuning the way I reach conclusions.

This might sound heady and what-not, but for me and my TBI recovery, it’s really important. I believe — based on watching my life and the messes that I’ve been bogged down in, over the years — that many of my troubles happened because I was not thinking properly. My cognition (being able to pick up clues from the world around me, sort them out, and do the right thing with what I figure out) has been totally screwed up.

It’s been screwed up because my senses have been off. My wiring has been frayed and connected wrong. When I fell in 2004, I had no idea how badly I was hurt — or that I’d been hurt pretty badly a bunch of times over the course of my entire life. I had no concept of how much my brain and my thinking had been affected by all those TBIs (9, by my last count — possibly more, because my memory is so spotty in so many places).

But my wiring was screwed up, which stressed me out.

And when I am stressed, it’s hard for me to handle a lot of sensory input. I get extremely sensitive to sound and light and touch, and my system is so busy trying to sort out the sensations and keep myself from freaking out, that I can’t think clearly about the “higher level” stuff. At all.

So, calming down my system so it’s not so stressed out, has been a big part of my recovery. Just taking the edge off the stress has become a top priority for me. That helps me think, because it tones down the sensory issues, so my brain can actually figure out how to do things — and do them better. It’s a whole lot easier to think, when your body isn’t screaming in pain over every little thing.

Y’know?

The other thing that’s done wonders for me, is starting out slow and methodical with everything I do, building up the right habits to follow, one step at a time, and then repeating those steps over and over and over, till they become ingrained habit that I don’t have to think about anymore. Making a list of steps to follow in the morning when I get ready for work, and then sticking with that list for six months, made all the difference. Even when everyone around me said I really shouldn’t need that list, and they got upset seeing me use it, I still stuck with my list, and it trained me to do things in a specific way that I am still doing today, years later. It routinized my daily life — the parts that should be routinized — so I don’t have to think about them.

I’m in the process of re-routinizing my life again — a new schedule for my daily work. A new direction and focus for my mind. And I know that this is the right thing for me to do, because going back to how things were before was brutal. And it sucked. So, I’m not doing that again. Not if I can help it, anyway.

Speaking of new routines, it’s time for me to get ready for work.

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.