Walking on a different wild side

I’ve been daydreaming about chucking it all and hitting the road. I’ve managed to save up a nice little chunk of change, banking it for house repairs and emergency situations. I actually have enough for an honest-to-God emergency fund now, which hasn’t been the case for close to 10 years. It really takes the pressure off. At the same time, though, it also tempts me to do something rash — like taking my little commuter car (which just got a tune-up), filling up the gas tank, and driving, driving, driving…

But I know it would never work. Never, ever. And without a doubt, I’d end up worse off then, than I am now. No doubt.

Here’s the thing — I need a break from all the heavy-duty daily frustrations. It’s just getting to be too much, and I’m not making good choices about how to get that break. Some people smoke. Some people go on social media. I dance with danger and run the risk of getting injured all over again. It’s clear that I need to change things up and get my blood pumping on a regular basis. I need a positive and productive way to get that adrenaline pump that keeps me sane and channel the energy I have into something that helps me, not hurts me.

That all being said, I think the key for me is to step things up with my hopes and dreams. I have an “old” dream of having my own business doing consulting and training about an area of expertise I have. I know there’s a market for it, and I know others do well in that line of work, I’ve just never made good on it. I have wanted this so badly, on and off over the past years,and I’ve made some starts, here and there. But I’ve repeatedly given up on that dream over and over. I got overwhelmed or confused or just felt like I couldn’t do it. I knew in my mind that I could, but I lost courage and backed off and went back to doing what I had been doing before — holding down the fort with my 9-to-5 job and steady paycheck.

Now things are different, though. I don’t have a horrific commute anymore — if anything, it’s going to get shorter. And I’m becoming increasingly motivated to move forward, as I talk to people about my idea, and they get really excited about it. I have managed to find a job where every day I am in the midst of some very forward-thinking people who are also super supportive, and it’s really doing me a lot of good.

These two magic combinations — time to work on my ideas, and supportive people with vision — are helping me get past myself and re-start anew. I’ve started this idea so many times, I actually have a lot of knowledge about how to get off the ground. And I have enough professional connections, I can start putting myself out there — while still holding down the fort at work.

So, there is hope. And my goal is to earn enough on the side, to be able to afford some travel. That way I don’t have to drive off by myself — I can bring my spouse with me, and we can have a fabulous time. It’s a plan. It’s a bonafide plan.

And rather than wasting my time and energy and risking my neck on danger-seeking types of behavior, I’ll court danger in the form of chasing my dreams and having them come true. Putting my life in danger in questionable situations, and putting it all on the line for my dreams, are the same type of activity. The difference is, one of them will actually have something to show for my risk-taking. The first one… all I get is a system full of adrenaline, a brief burst of clarity, and the potential for things to go really, really wrong in an instant.

So, in a very real sense, my motto continues to be Onward!

After TBI you’re still human

And you still have the same types of interests and desires and needs that you had before your injury/-ies.

You want to be fully engaged. You want to be involved in your life. You want to have hopes and dreams and to follow those hopes and dreams.

Why should any of that change after TBI? Some days, it’s like the world just expects you to stop being interested in the things that mean the most to you — to anyone. Like it should be so easy to let go of the old ways that were so familiar and made you “you“. And you’re just expected to do it. To adjust. To deal with it and move on.

This is something I really struggle with on a regular basis. It’s bad enough that I have to deal with the confusion and disorientation and not feeling quite “here”, half the time. It’s bad enough that I have to think through every friggin’ thing that used to come so easily to me, lest I get hurt or screw something up. It’s bad enough that everything feels like such a CHORE, and even the fun things are hard for me to do, sometimes.

But through all this, I’m expected to do it without any recognition or support. That just sux.

Even my neuropsych isn’t much help to me in this respect, because comparatively speaking, I’m not nearly as “bad” as their other patients. I’m high-functioning. My IQ is still up there. I have a good job and a house and all the trappings of modern success. I’m in a stable marriage of 23 years. I have a bank account and a plan for how to live my life.

What could possibly be wrong?

Yeah, well, I’ll spare you the details. The bottom line is, half the time I feel like crap. I don’t feel like myself. I can’t recognize the person who’s walking around in my shoes, wearing my clothes, doing my job, driving my commuter car to and from work each day, running errands on the weekend. Who IS this person, and how did they get in my life?

Addressing this is so difficult for me. I rarely bring it up with my neuropsych, because they don’t really seem to think it’s that big of a deal, and they don’t seem to think it should impact me. After all, compared to their other patients, I’m doing grand.

Oh, except for flirting with danger on a regular basis, and being totally oblivious to what all could go wrong in an instant.

To be truthful, I have not discussed everything with my neuropsych that I could. Over the years, there have been a lot of things I haven’t brought up, because they are way too upsetting for me, and it’s more important to me that I have a regular conversation with a regular person and be able to relax, instead of plunging into that infinite, bottomless black abyss that takes me over when the emotions run too high. I have to stay functional. I have to hold my sh*t together. I can’t be sitting around spilling my guts, and then getting so freaked out and upset that I can’t even see or walk straight. My neuropsych has seen me overwrought a handful of times, and they don’t seem to understand what all is going on with me. They got exasperated, as though I were not trying.

So, I just don’t go there with them. I keep things positive and talk about the progress I’m making. I don’t have many words to explain the way it feels inside. Plus, when I get to their office, I’m ALL THERE, and nothing else outside the office exists. There are so many pieces of my life that feel like a shambles to me, even though on the surface they look good and they are holding, I don’t have much hope that a strong wind wouldn’t blow them all down. In all honesty, I’m not even sure how they’re holding together. They just are. I’m just lucky, in so many ways.

That, and people are so consumed with their own lives, they don’t notice the chinks in my armor.

It all just feels so precarious.

And it’s a strain. Because I want to have a life I can be proud of. I want a life I actually feel like I choose, and I’m involved in, not just one that other people tell me I should have, so I go ahead and go for it.

So much of my life has been about just getting by… because I was the only one who could see what kind of crap I had to deal with inside. And nobody seemed to take seriously the challenges I had to overcome on a regular basis.

Oh well. I’m still here, and I still have my hopes and dreams to follow. I’m still a human being with my fair share of challenges, and I can’t lose sight of that. It’s all a massive discovery process, and in the meantime I might just learn a useful thing or two.

So long as I don’t get myself killed, chasing danger and risk, to remind myself that I’m alive.

How I can get hurt – again and again

Yeah, I’m a bad-ass alright. Hopefully not a short-lived bad-ass.

I had an interesting conversation with my neuropsych yesterday. I have been wondering about some judgments I’ve made, in the past six months or so, which — at the time — seemed fine… but in retrospect were probably not that smart. At least, that’s what my neuropsych has told me.

About six months ago, I was offered a ride on the back of a motorcycle, and I took it. I had to get somewhere fast, and this rider offered me a lift through a shortcut they knew. This rider (I won’t call them a biker, because I think of Harley’s, and this individual was on a BMW) was a stranger to me, and I had no way of knowing how good a rider they were. I’ve ridden with really bad motorcycle drivers before, and I didn’t care to repeat the experience.

But this individual appeared to be competent, and I hopped on the bike behind them.

For the record, I don’t drive motorcycles — or usually ride them — because of balance issues and attention problems. I can get distracted and lose my presence of mind, which pretty much disqualifies me for driving a motorcycle. It’s a great way to get seriously injured… or killed.

Anyway, the shortcut worked, and I got where I was going in record time. But not before we’d pulled some really dangerous stunts — fitting the motorcycle through very tight spots that were borderline illegal, and weaving in and out of traffic at high speeds. The driver also ended up taking a wrong turn, and we ended up driving around a blind curve directly into oncoming traffic — and the bike stalled on a low barrier and couldn’t move forward or back.

So, I hopped off the back, and while the driver got the bike started, I heaved at the back of the bike and got it off the barrier.

Very exciting. And also very dangerous. And potentially fatal.

Once I got where I was going, I realized how close I’d come to something pretty terrible. And worse yet, I was far from home in a place I wasn’t familiar with, and I’m not sure how I would have gotten help if I needed it.

It all turned out okay, and it was a thrilling ride of my life. But it’s not the sort of thing I should have done at that time.

A few months later, I was traveling (again). Near the end of a really long and tiring drive, I ended up at a rest stop where I realized I was being watched by an individual who looked like trouble. I gave them a wide berth, but later they were joined by another individual who looked equally rough, and they tried to engage me in conversation. Rather than keeping my distance, I walked right up to them, shook their hands, and had an extended conversation with them. In the course of the conversation, one of them identified themself as a known criminal. I didn’t bat an eye, just finished the conversation, and they took off… as though they were up to no good and didn’t want to get caught.

In retrospect, I was setting myself up to get mugged. Big-time. I didn’t… and I actually had a really cool conversation with those two. But was it a good idea for me to interact with these two at a rest stop along an interstate? Doubtful.

Then, the other night, I was driving home from work, and I got caught in a torrential downpour, accompanied by close lightning strikes. I could not see the road. At all. I should have pulled over, but I kept going. I could have easily run into a tree — or run into someone else. I didn’t, but even as I was driving, thinking that I might want to pull over, the urge to keep going was even stronger… overpowering. I got home safe and sound, and after sitting in the car for 5 minutes, the downpour suddenly stopped. Everything was fine. But it might not have been.

On all three of these occasions, I was tired, and I was looking for a “hit” of adrenaline to perk me up. I needed a pump — a jolt — to get me going. It didn’t matter that I was putting myself in danger. The whole point was putting myself in danger. I needed to get my stress hormones going and get myself back online. I felt dull and foggy, and I needed a boost.

So, I put myself directly in harm’s way. It worked — I did get the pump and the jolt I needed. But had things gone differently, I might not have fared so well. For that matter, I might not even be here.

Riding motorcycles is something I should NEVER, EVER do. I know that. I have avoided them like the plague — like I avoid tall ladders. Talking to folks who obviously look like they’re up to no good, and going so far as to shake their hands and “hang out”, is not something I typically do, either. I know better. What’s more, driving my car through conditions when I can’t see more than a foot past the hood ornament… I know WAY better than that.

But reason failed me. In a very big way.

And that’s how I can get hurt – again and again. By actively seeking out danger that makes me feel alive… that makes me feel like myself again… that puts all the pain and confusion and frustration away, for even just a few minutes.

My life tends to feel like a jumbled-up mess of contradictions and conflicts, and it’s hard for me to get any peace. I live in a body whose biochemistry tells me things are WAY more extreme than they really are, and as a result, I usually end up on a roller-coaster of emotion. I know better… but my body doesn’t get it. And it wears me out. Mentally and cognitively, my brain loves to do its own thing and not stick with the program. I’ve been forgetting a lot of things, and I’ve been coming up short, now and then, with projects I’ve been working on… playing catch-up and all that. I keep cool and maintain calm on the outside, but inside it’s sometimes pretty chaotic and frustrating and a little bit terrifying now and then.

So on the inside, I’ve got all these experiences of chaos and confusion and frustration, while on the outside, everything is supposedly okay. I know I’m not the only one who has this — most people do, probably. That whole “living lives of quiet desperation” thing that a philosopher once talked about.

That tires me out. And the quickest and most reliable way I know to stay “with it” is to add a little danger to my life. Or a lot of danger.

Looking back, I can see how almost all of my injuries — even from fairly young — came from this danger-seeking streak of mine. I put myself in dangerous situations. I also pushed myself to unsafe levels of play in football and soccer games. I drove while I was tired, and I pushed myself to do things when I should have stopped and rested. I needed the pump, I needed the adrenaline. I needed the shot of instant clarity, in the midst of all the confusion and static in my head, that I just couldn’t sort through.

I didn’t have a death wish. I had a life wish. And the one way I could really truly live my life, was to push myself past a certain point, and get lifted up by the pump.

I know I need to change this sort of behavior. It’s caused problems for me before, in subtle ways, and it’s doing it again. I don’t want to stop being the person I am. I don’t want to cower in a corner, hiding from life. But I would like to live to see another day. I’ll have to figure out something better, for how to get what I need to be as alive as I can be.

If I don’t manage to figure that out, all bets are off.

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.

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.