A little here, a little there, and all the while paying close attention

All those details bring the brain to life

We think too much in our daily lives. Most of us, anyway.

We read too much news that has nothing to do with us personally, and about which we can do nothing. Nothing at all.

We spend a lot of time and energy, packing our days full of activity and “achievement” and all the while we are getting farther and farther from the very things that give us satisfaction and a sense of meaning and purpose.

We move too fast, thinking that will get us more to think about and enjoy and experience.

I’m seeing that with my parents, who are on a hell-bent all-out rush to do everything they can pack into their lives — apparently wanting to get everything accomplished before they die. They’re not getting any younger, and they seem keenly aware of that. It’s almost impossible to pin them down, these days. They pick up and go at a moment’s notice  — camping, traveling, hiking, doing, doing, doing, doing….

The tyranny of a life devoted to checking off all the items on your “bucket list” is cruel and sadistic. You race and race and rush and rush, doing everything, seeing nothing, experiencing nothing, just having a completed checklist at the end.

But the simple fact of my own life is that doing less and digging in more, is far more satisfactory than packing in all kinds of hyperactive pastimes that produce far more fatigue than awareness. I’d rather stand still in one place, examining the toad that has taken up residence near my back door bug light, feeling the sun on my skin and the wind at my back, and even the mosquitoes flying around my ears… than race from Point A to Point B at top speed, just for the sake of getting there.

I’m really in no hurry.

Maybe it’s because I’m not afraid. I’m not afraid to lose, I’m not afraid to die. I’m not afraid. So, I’m in no rush.

Not today, anyway.

This, of course, is a huge change from where I was 10 years ago. Even 5 years ago. Even 5 months ago. It’s where I am right now. There’s no guarantee I won’t be wracked by fear in another 5 hours, but right here, right now, I’m pretty chill, with my feet firmly planted on the ground, and no — I mean no — fear of the unknown.

And I’m taking my time today, just soaking it all in. It’s good for my brain. It’s good for my life. Stopping to really zero in on what’s around me, having a really in-depth experience with it all… that’s the ticket.

I’m doing some reading, some writing, some work around the house and the yard. I’m moving through my days, just letting them all sink in, and enjoying them for what they are. I’ve been thinking hard about my life up to this point, and I’m feeling pretty damn’ good about how far I’ve come. Especially since my TBI in 2004. My ten-year anniversary is coming up… and I’m starting to get reflective, pensive… and extremely grateful for the recovery I’ve been blessed to experience.

It’s funny… the other day, I bumped my head as I was getting in my car. Ouch. I’ve had a little bit of a headache since, but I haven’t lost it over the whole thing. I’ve had bumps and falls, over the past few years, and they freaked me out a bit. But this time, I’ve been pretty chilled out about it. I have a sore spot on my head and a little bit of a headache, but other than that, I have no other symptoms.

I’m still paying close attention to what’s going on with me, because I don’t want to have any complications building on my past TBIs, and I don’t want to let a potential concussion go unattended. It’s all too easy to let things slide, and then end up worse off over the long term.

However, based on what I’ve experienced so far — no detectable cognitive or motor issues, no fogginess or other ill-effects — I seem to be fine.

Speaking of fine, it’s time for me to get out in this day. I have another day off work, which is fantastic. And I have a few hours before I need to head into the city to do some errands. Life is good. And it’s worth spending the extra time to pay close attention to the details.

Getting lots done is all very well and good. But in the end, I’d rather be able to remember and appreciate what I’ve experienced along the way.

Onward.

Remembering why I’m doing all this

It all stacks up, after a while

So, I’ve got a bunch of writing projects going, and in my usual fashion, I’m devising great plans for these works. I’ve always had a bit of a superiority complex with regard to my thinking. That’s mostly because I spent the bulk of my life locked inside my head, without a lot of “intrusions” from the outside.

So, of course I was the most brilliant person I knew! ;) When you’re the only one in the room, you can easily be the smartest one there.

On the other hand, my perception of myself in the outside world has been extraordinarily poor. In my mind, I’m the dumbest person outside the safety of my own head. That’s not such a stretch, when you have trouble remembering what people said to you, 5 minutes before. Ever try to hold an extended conversation with someone, when you can’t remember what they said, a couple of ideas back?

It’s not easy, that’s for sure.

Anyway, to cut to the chase, I’ve been writing and thinking about who I could send my pieces to. My head has come up with a massive publicity campaign that will get the attention of People Who Matter, and I’m already envisioning fielding all the phone calls from people who want to explore the possibilities of what I’m suggesting. I have a whole drama designed in my mind.

The thing is, it’s starting to get overwhelming. I’m starting to freak myself out. And I have to remember why it was that I started these writing projects in the first place:

For me.

To work on my thought process.

To refine how I think and get better at research and systematic thought.

To get better at continuing projects and sticking with them till they’re done.

That’s why I’m doing this. Not to get rich and famous, not to revolutionize a whole field of research, not to stir things up. But to refine my own thought process and become more organized, clear, and systematic in my thinking. Much as I like to dream big, the practical reasons behind this are even more important. Revolutions come and go. Rich and famous is nice, but I’m not getting there without working on myself. And stirring things up without having a solid, well-organized thinking foundation is just asking for trouble.

I’ve been unhappy with how I’ve been working, over the past… 30 years. I’ve started so many things, and then I never finished them. Some of them are really good ideas, too. And I’ve got to change this pattern where I’ll get going, then I get distracted by something else that seems like more fun, drop the thing I’m working on, and go off and do something else. As a result, I have a lot of good ideas sitting in my desk drawers that are half-baked, just kind of sitting around, gathering dust.

I don’t want them to gather dust, anymore. I want to be able to complete a project — or two or five or ten. I want to finish what I start, and be lifted up in the process. And I want to do it for the sake of doing it. For the sake of being lifted up. If anyone else benefits in the process, that’s fine, but the main focus needs to be on myself.

Okay, time to get back to work. There’s a lot of progress I still need to make.

Onward.

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

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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.

I must be getting better… a lot better

Sometimes you have to bring your own light

Got back last night from my return drive home. Found my spouse sitting in a dark house, watching television. Now, that’s depressing. They were really happy to see me… but it only took an hour till they started digging into me and my family about in-law pet peeves.

That’s par for the course. I’ve been hearing this same litany of complaints against my side of the family for over 20 years. The thing is, it hasn’t bothered me in the past, and it was kind of a semi-annual ritual for my spouse to complain bitterly about my family being the way they are. It really is my spouse’s loss. My family isn’t perfect — whose is? But they are my family, and they helped make me what I am, so you can either spend your time getting all revved and riled about something that cannot and will not change, or you can look on the bright side, find the things that are good and positive, and focus on them.

That’s what I choose to do, and it has made life more than tolerable for me. I’ve been able to find good in even the most miserable conditions. Now, miserable is miserable, for sure. But there’s always something good to concentrate on, that keeps you from getting all worked up and unhappy about things.

In the end, it’s my spouse’s loss that they can’t see the good in my family. And the fact that I’m not willing to dive into that old back-and-forth, and I managed to keep it from sliding downhill into an all-out fight… well, that’s signs of progress.

I need to remember that my spouse always starts to get “revved” around midnight, which was when we started talking about the trip. That was a killer for me, because I should have been in bed by then, but they wanted to find out about the trip and hear the details. The thing is, because they start to “rev up” around midnight, they wanted to fight, which made it really difficult for me to wind down and get to bed. It was just a poor choice on my part. The poor choice was all about me forgetting that my spouse gets anxious and aggressive and wants to fight, around midnight, and giving them the benefit of the doubt.

Mistake. Note to self — no matter how optimistic you may be about your spouse’s mental health at midnight, every single time, they prove you wrong, and you end up getting the short end of the stick. As in, not nearly enough sleep — like five hours or something like that. If I’d had my wits about me, I would have just turned in and said we’d talk about the trip today, after I had some time to let it all sink in — and catch up on my sleep.

Also, last night showed me pretty clearly that I really am getting a lot better. I’m in a good space… while my spouse is not. If anything, they’re getting worse. They really do seem to be slipping away from me… fading away, wallowing in outrage and upset, and just getting worse and worse. I think what’s happening is that they are blowing out their system — they’re not watching what they eat or getting adequate exercise, and because of that, their vascular system is not holding up. So, when they get all worked up over things and their blood pressure gets up, it blows out the little capillaries and connections in their system — their brain, possibly their kidneys — people have talked to me about this, and I didn’t really want to come to terms with it, but being away for a few days just makes it all the more obvious to me that they are not well.

But I am.

And I’m getting better. I’m getting much, much better — each and every day. I’m focused on it. I’m working at it. I’m making it a top priority. Part of my motivation is seeing how sub-par my spouse is functioning. Seeing them going downhill so steadily is a great motivation for me to do more to keep myself fully functional — and even improve. I know in my heart and mind that we have more “say” about what happens to our bodies and our brains, than popular conventions give us credit for. I also know in my heart and mind that even if I am going downhill, it’s not going to be by default. They’re really going to have to work at killing me, to take me down.

I’m not going down just because “that’s what happens” when you get to a certain age.

Another thing that’s really motivating me, is seeing the rest of my family and seeing how they’re living. That’s not how I want to live, at all. They are constantly on-the-go, and it’s really exhausting. They just go-go-go, and they don’t spend a lot of time to stop and think things through. They’re all on auto-pilot, doing what everyone around them does, and that’s pretty depressing in its own way. They do have connections with a larger community, and they do have a strong sense of belonging, but the community they belong to, leaves a lot to be desired, in my opinion.

If their community were so great, I’d still be there. Note well, that I am not.

So, on both ends, I can see that I’m doing well. I’m doing better than ever. And while things are rough and rocky, here and there, the fact that I can see that things are not how I want them to be, is a great sign of progress.

Once upon a time, I would get sucked into the fights and arguments and bitch-fests with my spouse, and I’d feel all the more alive and invigorated from it.

Once upon a time, I could not spend any time around my family without wanting to kill myself. Literally.

Now, neither of those are true. I’m finding a healthy middle ground, and it’s good.

Now, it’s time to get on with my day.

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.

Just being grateful solves a lot

I’ve been struggling a bit, lately, with some resentments and frustrations. Starting a new job and feeling like I’m new all over again has been a little tough. I want to know what I’m doing. I want to have expertise. But I have to go through the process of doing that. And after being alive and learning so many lessons for around 50 years, now, there’s a part of me that feels like I *should* know more than I do.

I know I need to learn in my current position. I need to learn who the people are, how to use the technical tools, how to navigate the political landscape, and so on.

I just get tired, I guess. I’ve been having some long days, lately, and things at work have been quite frantic, with a deadline suddenly looming, where none was just a week ago. It’s been a bit of a fire drill, to tell you the truth, and it’s taking a lot out of me.

I am also going to be traveling this weekend, so that means I have to do more to get ready. Sigh. At least I slept till 6:30 this morning, instead of waking up at 5:30.

Of course, I didn’t get to bed till after 11:00. Oh, well. At least I got about 7 hours of sleep. That’s better than I’ve been doing regularly, for quite some time.

So, the good part is, I’ve gotten some sleep. And another good part is, this seems like a company I can be productive and happy at, for the long run. It doesn’t feel like a contract, right now. It feels like the beginning of a permanent spot, and for the first time in years, I’m happy for that. I did feel that way, to some extent, at the last company I worked at… until they moved the office farther away, mixed up the organization, and screwed everything up.

I actually do miss my old friends from there — I’ve really been feeling that, lately. But I don’t miss the company. I’m just so glad to be done with them.

Anyway, back to the present. I’ve realized that with all my struggles and difficulties — feeling tired and disoriented and harried and a bit stressed over adjusting, not to mention a bit of political drama (already… it only took me 2 weeks to screw up) — the one thing that helps the most is gratitude. Sleep helps a bit, but it can wear off. Fatigue or restedness are not things I can will into or out-of existence.

Gratitude, on the other hand, is something I do have control over. I can change my frame of mind and change my attitude, and reach a place where I am really, truly grateful for everything I have around me. I look for the good, and I look for the benefits to the situations I’m in, and it really turns around my outlook and mood. In my darkest times, making a list of all the things I’m grateful for — especially good things that are buried in the midst of tough situations — brightens my outlook and lifts me up out of my funk.

Things at work right now are pretty challenging. I have a bunch of things on my plate that I need to sort out, and it doesn’t feel like I have the time or updated ability to do them properly. But they are big opportunities. So, today I’m starting out with gratitude and focusing on the things I can do, the lessons I can learn, and I’m concentrating on the positive things that will come out of it.

People at work are starting to warm up to me. And I’m learning the lay of the land. So, things are looking up. I just can’t let myself fall into a funk over stuff that’s transitory. The sources of stress and strain right now — the unfamiliarity, the uncertainty, the lack of connection with people — will all sort themselves out over time. I just can’t let the tone for my work be set by that temporary state. Not when a better permanent state is just around the corner.

I never know when things will turn around. So, I’ve got to keep steady and positive. And look to the brighter tomorrow. For so many good things that haven’t even come to me yet, I am truly grateful.