Not myself, this past month or so

I hate to admit it, but for the past month or so, I haven’t felt like myself. That is, the self that I had come to know myself to be, over the past years… the self I had trained myself to become — and to notice.

I’m not whining about it. I just need to go on record, so I remember it later. Not all is hunky-dory, and I’ve spent an awful lot of time masking all this and keeping myself from thinking too-too much about it. That’s counter-productive. I hate hearing myself talk about what’s wrong, but I need to be aware when things are not ideal, so I can do something about it.

I haven’t got time right now to chronicle everything I am doing to address these issues, so for now, I’m just going on record.

Lately, I’ve felt like things are unraveling… starting back in September when my PCP died, and the only doctor I ever felt comfortable with was gone forever.

Then in October came the announcement that the company I work for is being acquired, and all the assumptions and plans I had about my future (going back to school, getting my degree, staying on there until I could finally retire)… that all became incredibly tenuous.

Then in November my neuropsychologist tells me that they’re retiring this coming spring, and the one working relationship I’ve ever had with anyone who didn’t make fun of me or treat me like there was something wrong with me when they simply didn’t understand, suddenly got an expiration date.

The car needed a couple thousand dollars of repairs over Thanksgiving, and my bank started warning me that I was low on funds.

And then in December I find out there will be layoffs, and I and my group barely missed being cut. Someone I really depended on for advanced technical support got laid off, so now I’m sorta kinda hung out to dry, in one respect.

It’s just been a heck of an end of the year.

At least my spouse and I are reasonably healthy (aside from some nasty colds — knock wood), and we’ve had no other calamities. But piece by piece, some of the main supports I’ve been relying on, have been removed.

I guess it’s time to find new ones.

And it’s been strange. I haven’t really felt like myself for over a month. I’ve been a lot more on edge, blowing up more at my spouse, getting confused and disoriented at work. At Thanksgiving time, I was balancing between completely losing it and letting off very controlled bursts of angry steam. And while I’ve rarely been a real Christmassy kind of person, this year especially I just haven’t been in the mood. The weather has been strange, but after the absolutely sh*tty winter we had last year, I don’t care that it’s going to be warm and sunny on Christmas Day. That’s this Friday, and, well, it can come and go, for all I care.

I just don’t feel like myself. Nothing seems worthwhile, and in all honesty, the only thing that brings me total satisfaction is trapping the mice in my basement. I rigged up several traps on a little ledge where I’ve seen them run in the past, and I’ve caught four of them, so far. I have a feeling I’ll be trapping all the mice in the neighborhood, by the time all is said and done, because my garage is not very well sealed, and I’ve seen them come in through gaps in the trim. Right in front of me. Brazen.

Well, now those little brazen bastards are getting dead. And while I do feel pang of quasi-Buddhist regret that I’ve taken a life, I do NOT feel regret that these creatures aren’t running amok through my basement. I figure, I’m releasing them to their next incarnation — just speeding up the cycle of life for these rodents.

It’s not the death that appeals to me. It’s the yes-no, success-failure, instant gratification of seeing that at least something I’ve done is working. It’s basic. It’s primal. And I’m managing to successfully defend my castle against at least some maruaders.

I just wish I felt more like myself, instead of being shaky and tired and disoriented and prone to error. I’m spaced out, a lot of the time, I feel like I have more on my head than I can handle, and while I’m sure things will be fine and I’ll be able to handle whatever comes along, it’s still tiring, and I feel like I’ve lost my mooring.

Maybe I have. Maybe I have.

I just have to get it back, I guess. It’s now officially winter, and I’m ready for it. I just want to hibernate, go underground, and maybe that’s what I’ll do, more or less. The last several months with the company change have been very chaotic and unsettling for myself and everyone at work. It’s next to impossible to make any plans, and nobody knows what the criteria are for deciding who stays and who goes. Nobody can give us any clue, either, because that might tip their cards, and everyone might just take matters into their own hands, and then the deal might fall apart.

So, hibernation (figuratively speaking) might be the best thing to do. Keep everything simple and lay low. Cut back on social media (which I have). Stop reading the news (which I must). Concentrate on what matters most to ME (not the rest of the world). And focus on the basics — eating right, exercising regularly, and doing things that appeal to me and that I love and which also make a constructive contribution to the rest of the world.

I also need to get back to dealing with the logistical issues that come up with me. Sensory issues are problematic — light and sound and touch have been giving me problems. I’m dizzy a lot — almost fell over the other day for no good reason. I’m space-out, foggy, and I feel a split-second delayed, though that could be a symptom of me still being sick. I have problems typing, and my handwriting is a mess. I skip the first letters of words while I’m writing in long-hand, which is a new one for me. My temper is short, I’m getting “snappier” than usual, and I have bouts of intense depression. And lately, the headaches are back, along with the episodes of sudden pain shooting through my head, followed by feeling dull and out of it.

But hell if I’m going to take that Imitrex. F*ck that sh*t. Talk about feeling spaced-out… I feel bad enough as it is, without adding medication to it.

So, I do my breathing exercises and get my head out of a stressed-out space, and it helps a bit. It also helps to ignore it and just get on with my life. But the headaches are getting intrusive, again, and when people like my chiro or my massage therapist ask me about them, it just irritates me, because the things they do for me don’t actually seem to help all that much, but they’re so convinced that those things are The Ticket. It’s nice that they try, and I know they want to help, but there’s nothing that seems to really Work for me. Not these days.

And trying to explain that to them is a pain in my ever-lovin’ ass. People get so sensitive and offended and frustrated when I tell them what they do is not working. No science, no tweaking their approach. Just getting irritated and frustrated — and keeping on doing the same thing as before. So, I quit saying anything. Because even when I try to explain, it doesn’t help.

It’s the classic tension between what appears to be, what people think really IS, and what my experience of things is. And that fragmented collection of disconnects makes me absolutely crazy.

That, and the fact that my weekly schedule is about to change, with my neuropsych seeing me on Fridays at noon, instead of Tuesdays at 5:30 p.m.  Argh! Change! I hate it!  And I hate that it makes me so unsettled. I wish it weren’t so.

But bitching about it won’t change anything. I just need to get on with my life.

My new mantra: Screw it. Onward.

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After so many years in confusion and pain…

coming out of the dark
It’s been a long time coming… but it’s here

I can honestly say that life is leveling out for me, and I now have what I would consider a “regular” life. And starting from there, things are becoming truly exceptional.

The “regular-ness” is amazing and phenomenal in its own right. I have been thinking about how many years I spent in confusion and frustration, always playing catch-up, always struggling to keep up appearances of normalcy, always feeling — and being — so behind. And never knowing why that was.

Little did I know, concussion / mild TBI had knocked the crap out of me. I’m not like folks who go through their lives at a normal pace, then have a concussion / mTBI screw them up. I was always screwed up by brain injuries. I started getting hurt when I was very, very young (maybe even having an anoxic brain injury – from having my air cut off – when I was an infant, according to my mother), and I continued to get hurt regularly over the years. I never got hurt badly enough to stop me from diving back into things. And nobody around me knew that I was hurt badly enough for it to throw me off.

I kept all that pain and confusion inside, for as long as I could remember. It was just one day after another of working overtime, trying to keep up with everything… and failing. Always coming up short.

Now, suddenly, I feel like I’ve come out of a long, dark tunnel into the light. No, not suddenly… It’s been a gradual process, so my eyes have adjusted to the light. But the realization of where I am and how I am now, is sudden. It’s like I’ve at last joined the land of the living.

And I am amazed.

How did this happen? How did I get here? It’s been a slow building process, with pieces of the puzzle floating around in the air… taking their sweet time getting plugged back together again. But once they click into place, they click.

Phenomenal.

So, now I have to ask myself — how did I get here? How did I manage to do this? I had all but given up on myself and figured I’d just be struggling and battling, all my born days. But I don’t feel like that anymore.

How did this happen?

I think there were a number of factors:

  • Having someone to talk to on a regular basis – first, my neuropsych, then another counselor who has been able to talk me through stickier emotional things that I don’t like to discuss with my neuropsych. Having someone to just listen and then get to interact with, has had a hugely positive impact.
  • Deciding that I needed to get better. Even when everyone was telling me I was fine, and I didn’t seem at all strange or brain-damaged, I could feel that something was off. I just wasn’t myself. Nobody else seemed to get it. But I did, and I was determined to do something about it.
  • Getting my Sense-Of-Self back. This was the biggest piece of things, by far. It’s been the key, because restoring my Sense-Of-Self makes everything else possible. It absolutely, positively, is the biggest piece of the puzzle.

How did I do that? I’ll be writing about that in the coming days and weeks, as time permits with my schedule. But basically it’s this:

  1. Find a small but significant way I am struggling — a day-to-day required activity that “shouldn’t” be difficult for me, but which is a huge challenge. Getting ready for work each day is a perfect example for me.
  2. Develop a system and a routine for doing that small but significant thing the very same way, each and every day. Making this system into a routine not only makes it predictable and comfortable, but it also keeps my brain from being overtaxed by having to reinvent the wheel each and every day.
  3. Really pay attention to that routine, and really dive into it with all I have, sticking to it like glue.
  4. That routine then “rewires” my system — brain and central nervous system and autonomic nervous system — with familiar and recognizable patterns.
  5. These patterns become something I can then rely on, to know who I am and what I am about… and what I can reasonably expect myself to do under regular circumstances.
  6. In times of uncertainty and insecurity, I can go back to those patterns and find comfort in their familiarity. So that not only gives me confidence in myself, but it also gives me a refuge where I can find some self-assurance again — even in the smallest of ways.

It’s all about building confidence over time.  Predictable patterns. Predictable behaviors. Predictable reactions. And that can lead to predictable outcomes.

Our brains are pattern-seeking by nature, and when we don’t have predictable patterns, we have the sense that we are in chaos — we are threatened. Building in predictable patterns is the key, for me, to a healthy recovery from PCS / mild TBI / other brain injury issues. And anybody can use this. Anybody can do it.

That includes you.

Retraining what needs help

Note: From here on out, I’ll be adding memory and reasoning training to my posts.

It makes no sense for me to have hundreds of readers every day who are looking for TBI recovery solutions, and NOT offer them something to grow stronger. Here’s the first exercise, which you’ll complete when you’re at the end of this post. Get a pencil and paper (you may need to erase and redraw some of the lines) and at the end of this post, you’ll draw the image below on your own.

3-circle-2-plank-double-slash-l-r-boxes
Here’s your first memory exercise – Study this image for as long as you want. Memorize the shapes… and after you’re done reading this post, draw it by memory on a piece of paper.

Gotta work it

So, I had my session with the brain trainer yesterday, and it was interesting. They brought a bunch of puzzles and tests with them to try out a bunch of different areas where I’ve said I need help.

  • Screening out distractions and staying focused on the task at hand.
  • Remembering things over time and not “losing” them when other things get me thinking in other completely different directions.
  • Being able to sort through multiple choices and differentiate between things in a logical way.
  • Reducing my impulsivity.

That last one is a biggie.

But the other ones are pretty important, as well.

A lot of the tests were visual — connecting dots in a certain way, as well as doing word comparisons and combinations. There were pattern-matching exercises, as well as numerical progression puzzles. I had the hardest time with some of the dot exercises, which were surprisingly challenging. I understand there are lots and lots more of them, which I can imagine would get maddening after a while. I got tired on the dots — more tired than on the others.

One area, in particular, was very revealing — I completely missed a couple of totally obvious answers. Although they were identical to the answers of questions immediately prior to them, the way they were presented was different, and I was rigidly thinking about the cues that I had used before.

Tricky.

And telling.

All in all, I did pretty well. But the main objective of the training is not to find out how I perform on a scale relative to others, rather to determine how well I can adapt my strategies and come up with other options in my problem-solving. It’s all about learning how to learn. Sharpening your reasoning and differentiation abilities and coming up with creative solutions in the face of challenges.

So, I clearly need some work in flexible thinking. It sounds like really basic work, at a very simple level, however it turned out harder than I expected.

Based on my experience, I’ll be following up with this trainer in August, once my new job is settled and I have an idea about my schedule. My new job will actually put me significantly closer to the trainer, so it will be easier for me to meet with them, than it is now. I’m really looking forward to digging deeper into this, and they are reasonable, so I can save up my money over time to meet with them.

So yes, that was good. And I’m feeling really, really hopeful about the chances of turning around my deficits by conscious practice. I don’t feel quite as “stuck” as I have over the past months of being told that 5 of my 6 deficits remain unchanged after years of rehab. Then again, my focus in that work has been on the one area where I have seen massive progress. So, if I work at the rest of them — in a slightly different way than before — I have hope that I can improve there, too.

Speaking of conscious practice, grab that pencil and paper, and draw from memory the graphic at the top of this post. No peeking. If you’re not satisfied with how you rendered it, study it again in more depth, focusing on the areas where you messed up, and then try again.

I did this exercise yesterday with a graphic that seemed simple enough to me, but after two tries, I had still not gotten the whole picture 100% correct. This is not about perfection… it’s about progress. Of course, if you get it 100% right the first time, then you’ll need more challenging tasks.

 

 

The Grand Canyon of post-TBI traumatic stress

You can end up like this – with a big old gash cut into the foundation of your life

Trauma from traumatic brain injury is about more than what caused the injury.

Life after TBI (or other brain injuries) is traumatic all around. And the stress of living with yourself after TBI, can be like a river cutting a canyon into the earth, one bad experience at a time.

If you really want to help, you have to factor in the stresses that come with TBI.

You need to understand how traumatic it is to deal with the changes of a brain injury — the changes to how you process information, how you react to that information, how you interact with others, and how that compares with who you knew yourself to be, before.

You also need to understand how traumatic those changes are — what a threat they pose to your identity, your sense of self.

You need to “get” that the trauma builds up and can overwhelm an already taxed system. And if it is not cleared by things like exercise, good nutrition, some sort of self-help routine like meditation or mindfulness, and regular interaction with strong social supports, it can — and will — erode a person’s ability to function over time.

The other thing it’s important to realize is that while the Grand Canyon may always be there, you don’t have to stay in the bottom. The effect of the damage is fixable — it’s even reversible. No matter how far down a person has gone, it is always possible to help them rise back up. They don’t have to stay at the bottom of that gulch. They can climb out of that canyon and find firm footing again.

The human system is built to rise from the ashes, to re-wire its circuits, and find ways to become fully human… even if your sense of human-ness seemed to be long gone.

I have been caught in my own canyons many times. And I have climbed out of them, repeatedly. I have rebuilt my system, seemingly from the ground up, many times over in the course of my 50 years on earth, and I know from personal experience how impossible it can feel.

I also know from personal experience, how possible it really is to get up and out of The Pit.

But before you can do that, you need to understand that what’s pulling you down is very, very real, and it needs to be accepted as “a thing” and addressed directly.

Avoiding the trauma aspects of traumatic brain injury is a mistake. But it’s also reversible. And you have to do it in the right way, in the right sequence, with much sensitivity and intuition, not to mention common sense.

More on this later. Must get to work. But this is important. For all of us.

Making the most of everything you’ve got

It happens

So, you hit a rough patch. Maybe you literally hit something. Or it hit you. Or someone hit you. Or you got roughed up in some other way by this thing called Life.

It’s not fair. And it’s not fun.

No doubt about it.

And now you’re left feeling like you’re damaged. Broken. Down. For the count, or permanently.

I’m not going to give you a think-positive pep talk and lecture you on happiness being a “choice”. I heard a conversation like that yesterday while I was waiting for my turn at the chiropractor. Someone in the waiting room was depressed — really struggling with that wretched sense that comes with depression — and one of the other patients (who apparently helps others with alternative healing modalities) started in on this lecture about how you have a choice between depression and happiness. You can choose to take action, or you can choose to “wallow” – not in those words exactly, but that was the gist I got.

I kept my comments to myself. I was busy reading an eBook about neuroplasticity, which was far more useful to me. And I did keep my eyes from rolling, as the person trying to help started in on this (seemingly) oversimplified explanation about a technique that supposedly helps “break up old patterns”. But it got my blood boiling a little bit, hearing all the platitudes that they picked up along the way in who-knows-how-many Saturday morning workshops about all these different modalities.

I managed to put it out of my mind after that. I’m just now remembering it.

And I think about all the folks in the world who struggle with some hidden difficulty of one kind or another… who are just so beaten down by it, without a lot of fresh ideas about how to get past it, or manage it. The last thing I want to do is add to the heap of suffering by waxing eloquent about how choice trumps everything, we make our entire world with our thoughts, we manifest the lessons we need, etc. There is some truth to that, but some days, life just roughs you up and you have to work with what you have.

When you’re just trying to stay functional, all that talk is like serving goose liver pate to someone who hasn’t eaten in a month. It can seriously screw them up, when all they really need is some basic nutrition, eaten slowly, so the digestive system has a chance to catch up with itself. If you go too fast, or the food isn’t right, you can do harm.

Not to mention it can sound pretty uncompassionate and clueless about the true nature of certain brands of suffering.

Anyway, enough complaining about that. In my own life, there have been plenty of ups and downs. Bumps in the road. Sinkholes, really. And I’ve spent a lot of time down in the pit. I don’t like to think about it nowadays, but I used to be intensely depressed. A lot. To the point of suicidal thoughts. I didn’t want to live anymore. There didn’t seem to be a point to anything at all. I felt useless and clueless and lost, and I had no idea what the true nature of my difficulties was.

It’s been several years since I felt the kind of desperation and despair that used to pull me down. The last time I seriously considered ending my life, was 3 or 4 years ago, when I found out some things about what was really going on in my marriage. There didn’t seem to be any point to continuing, because being a capable spouse with a loyal partner is a huge part of who I am and how I define myself. When I realized that things were not as I imagined, on both counts, I decided to drive out to a bridge within a day’s drive of me that spans a massive chasm with a river at the bottom. It’s not hard to climb up, and there’s a parking lot at one end, so I could just park my car, leave a note (or not), climb over the railing, and jump to the end of my suffering.

That’s the closest I’d been to actually killing myself, in over 20 years. Back when I was struggling after a couple of automobile accidents (I got rammed two times in the space of a year), I was so low, screwing up on different jobs, lost, dazed, disoriented… I was planning on killing myself by driving head-on into oncoming traffic. I had the location all picked out, not far from my home, where I knew traffic sped up and there was a blind corner that everyone flew around. The health and safety of others in the oncoming cars never occurred to me. I just wanted to end it. Fortunately, I got some help and found people who could help me before I could act on it, but that sense of just wanting everything to be over was very other-worldly. And if I hadn’t gotten the right help at the right time, I wouldn’t be writing this, right now.

Anyway, over the years, severe depression has followed me — often following TBIs… the “mild” kind, no less. The world dramatically under-estimates the impact of mild traumatic brain injuries, just calling them “concussions” and shrugging them off, like they did with those two soccer players in the FIFA Women’s World Cup. Because you can’t see what’s going on inside the skull, they think it’s not that big of a deal. If you can get back up and walk, you’re fine, apparently. And that mindset includes the folks who sustain the TBIs. Because our thinking is addled. Confused. Distorted. And we have about the worst judgment you could ask for — especially when it comes to making decisions about whether to play on, or not.

And for many of us, with all that confusion comes depression. Frustration. Despair. We just don’t know who we are or where we fit, anymore. Likewise, the people around us don’t understand who we are or where we fit, and because their own identities are tied up in their interaction with the person we used to be, they lose part of themselves, when we get hurt.

I believe that’s why so many people abandon folks with TBI — we are all so interconnected, that our identities are tied up in how the people around us are, so when those people change, we lose part of ourselves, as well. We don’t know who we are, anymore. It’s uncomfortable. It’s a scary thing. So, we drift away, rather than hanging in there and finding out who else we may all become, as our lives unfold.

Anyway, I realize I’m really going on, here. I started out wanting to say:

Life throws some tough punches, at times. So, what do we do with the aftermath?

I started this post wanting to explore the ways that we can use our own difficulties and suffering to reach out to others and help them. I guess maybe I am still saying that. Life is a challenge for so many, many people, regardless of how they look on the surface. And sometimes the folks who seem to have it the most “together” are the ones who are carrying the heaviest load of pain and isolation. There’s no isolation like having everyone around you believe — or expect — that everything is fine and cool, and you’re doing just fine… when you feel like you’re dying inside.

For me, it comes down to this — because I know how hard it can be, because I have stood at the brink of my own self-destruction, because I have been through fire after fire, struggled through so many seemingly impossible situations, and I’ve pieced things together for myself, even while the rest of the world refused to see what was going on with me (and still does, in fact)… it makes it all the more possible for me to accept others’ limitations and not jump to conclusions about how capable or “well” they are.

As someone dealing daily with hidden issues that I am either too proud or too busy or too confused to reveal and discuss with others (or even sometimes acknowledge), I can never be positive that the person across from me isn’t in the very same (or similar) situation. It could be, we’re both putting on a good show.

Knowing what I know makes it possible for me to hold my tongue and not lash out, when people are trying to be helpful (and doing a sort of bad job at it). It makes it possible for me to be patient with others who are “under-performing” or aren’t living up to my expectations. It makes it possible for me to see past the scars and disfigurement to see that there is really a person in there who is very likely smarter and more capable than I can imagine, and who has been dealt a rough hand they can’t help but play.

It also makes it possible for me to encourage others to expect more of themselves, to do more with themselves. Sometimes you just have to cut the B.S. and get on with it. There is no point in sitting around feeling sorry for yourself, when there is a whole world out there waiting. And while my experience makes me more patient in some ways, it makes me more IMpatient, in others. Because after all the crap I’ve been through, I know from personal experience just how much is possible, if we get the right information, really apply ourselves, and stop making lame excuses that are just meant to get us off the hook and relieve the pressure, rather than addressing root causes.

It’s a double-edged sword, but it’s a useful one.

And that’s all I will say for now.

Onward.

The way the brain really works

Time to upgrade the system – because I can

So, something has occurred to me over the past years, with all the new neuroplasticity writing coming out.

At last, science is catching up… which is helpful.

And folks are publishing well-researched work, which is both informative and often entertaining. Plus, “citizen journalists” are spreading the word about breaking stories and fringe reports about things that you don’t normally hear about in the mainstream. And YouTube has stories about people who plainly beat the odds. So there.

Like the woman in China who was born without a cerebellum, but is still walking around like a normal person. She’s a bit unsteady on her feet, but she’s still walking around, which she supposedly would not be able to do without a cerebellum.

Or the Israeli soldier who lost the part of his brain that controls speech… talking into the camera like a regular person. Of course, it would be easier for me to assess his skill, if I spoke Hebrew, but he sounded pretty articulate to me.

Or the young many who had half his brain removed by surgery, who is walking and talking and living his life, albeit a little less smoothly than “normal” folks, but still…

What occurs to me, as I see and hear stories of people whose brains have re-routed the activities of damaged/lost portions of their brains, is that all the parts we think are solely responsible for certain functions — like speech and motor control — may actually be primarily responsible for those functions, but not exclusively. It’s like the brain has main thoroughfares for signals — like a freeway heading to the airport — along with a network of service roads that parallel the freeway and can get travelers to the same destination, albeit a bit more slowly and with perhaps a few more bumps along the way.

The idea that specific areas of the brain are the only sources of certain types of processing and control, is being trumped by emerging data that different parts will “light up” in different ways for different people. The basic functionality is the same, but how it’s done varies from person to person.

It’s just like the shapes and sizes of our organs. People have all sorts of variations in their livers, kidneys, spleens, lungs, heart, reproductive organs, muscular structure, brain… you name it. The pictures we see in the anatomy books are “common denominator” depictions — standards which can vary from individual to individual. And it seems more and more like the same holds true of the brain’s functions.

We’re still learning a whole lot, of course, and more research comes out every year (month?) to update our understanding. And we see more and more evidence that it is indeed possible to retrain the brain to do things it’s not “supposed” to be doing.

So there.

What I take away from all of this, is that I need to not settle for a “new normal” that leaves me exhausted and dull at the end of each day. I’m looking into ways to strengthen my thinking and improve my endurance, and also to find better, more efficient ways to think. I’ve been adjusting to head trauma since I was a young kid, and I believe it’s led me to use thinking processes that aren’t quite as efficient as they could be. And there are definite areas of deficit that have been with me for a long time — like being very distractable and losing track of where I am in an extended process.

I’ve got this new job ahead of me, and I want to do my best.

Time to recruit more parts of my brain to do the thinking job better.

Onward.