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.

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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.

Type A Personality with a TBI? You’re a GREAT candidate for recovery – Part 1

rat-brain-dendridic-changes
If rat brains can change, due to environmental enrichment, so can ours — click to read about helping with stroke (which also applies to other sorts of brain injury)

I’m pretty much of a Type A person — although my competitive streak targets myself, rather than others.

Wait, no… I do instinctively compete against others, as well.

I must admit, I’m happiest when I’m Alpha. This is not in a mean-spirited way or in a way that is driven to destroy everyone around me. I’m just happiest when I’m at the top of my game, and the person I compete against most, is myself.

Anyway, I believe that Type A personalities have a special proclivity to TBI / concussion, because we push it. We take chances. We test the limits of the envelope. And we do it with a single-minded focus that blocks out all dangers… sometimes till it’s too late to protect ourselves.

And then we can get hurt. Frequently. We can end up with persistent symptoms, because on top of getting hurt, we haven’t taken time out to rest, and that concussion / TBI is telling us to keep going at an even faster pace.

See, that’s the thing with concussion / mild TBI — all those chemicals released in the injured brain are inciting an organic fight-flight response that impels us to go-go-go. I personally believe that response is due to an evolutionary advantage that preserved the human race over the ages. Once upon a time, when everyday life was a lot more physically dangerous than it is today, our brains had to evolve to get us up and out of dangerous situation ASAP. And those who didn’t adapt to switch into get-the-hell-going hyperdrive, ended up stuck at the bottom of the pile of rubble. Or they got the rest of their body chopped in half by that sword-wielding opponent who gave them a whack the first time.

Back in the day, being overrun by invaders, going to war with hand-to-hand combat, being charged by a predator, and extracting yourself and your loved ones from a natural disaster were all more frequent than they are today. And those whose brains got them UP and OUT — who kicked into GO-GO-GO-GO!!! action, got to live to see another day. I’m no evolutionary biologist, but I suspect that those whose instincts did not get them moving ASAP probably died out a long time ago.

So, small wonder that when you get hit on the head, your brain/body drives you on and on and on, without any apparent reason. The brain is trying to get away from danger. The only problem is, the danger is inside the skull. And there’s no escaping that.

Anyway, in terms of being a Type A personality, we can really harness that drive, that ambition, that impetus, to recover from our injuries. Even if you can’t get access to a neuropsychologist to consult with, there are a number of other options available. Of course, part of the problem is that there are so many options, and not all of them are reliable or credible. Concussion has turned into big business, and there are plenty of people ready and willing to make a ton of money off it. But not all of them know what the hell they’re talking about. As long as they sound authoritative, that’s all that matters to some people.

So, what do you do and where do you turn?

I think a good place to took, is to other folks who have experienced successful recoveries from concussion / TBI. There are books out there, along with blogs. Unfortunately, the discussion can often drift towards commiseration, rather than remediation. People want to be supported and know that they’re not alone. Of course they do. We all do – including me. Unfortunately, a lot of times (and I’m guilty of this), the discussion ends up mired in detailing all the issues, rather than how to fix them.

Now and then, though, you can come across stories of success and triumph. Here’s one paper about success stories you may like. Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series (click to download the PDF). It shows quite clearly that recovery after brain injury is possible, and it’s not a death sentence.

No matter what others say.

This discussion to be continued – click here to read on…

Here are the materials I downloaded in 2010, which you may find useful:

 

 

Type A Personality with a TBI? You’re a GREAT candidate for recovery – Part 2

Improvements in total time to complete the pin-plugging test using long pins for subject CC. Improvements were found after 9 weeks of intervention for the affected hand.

This is a continuation of an extended thought process – click here for the first part.

Science (especially imaging) is starting to reveal what has always been true of the human system. It changes over time, responding to stimuli. The idea that brain injury is permanent and can’t be overcome is hogwash, as evidenced by research, studies (like the one referenced in the image on the right, which shows how Long-term sensory stimulation therapy improves hand function and restores cortical responsiveness in patients with chronic cerebral lesions), and recorded experience. The weird thing is, despite all the studies that are coming out (and have come out for decades) about how the brain does change and adapt, if challenged, there are still those who believe that brain injury is irreversible, and once you lose certain functions, you’re screwed.

Oh, hell no. Sorry, I don’t buy it. I don’t care what anyone says.

Brain injury survivors do NOT need to resign ourselves to living less-than. We do not need to “adjust down” our expectations to a “new normal”. That’s ridiculous. And the fact that so many people have been told they had to do that, and have just given in to doing that… it makes me a little sick to my stomach.

Of course, there are many reasons for this. Lack of information. Overwhelm. Cynicism. Defeat. Lack of imagination. Rehab industry bias against brain injured folks. Etc.

Also, Type A people tend to intimidate people. And Type A people with unresolved TBI issues can be a real terror — hell on wheels. So, small wonder that folks in the rehab business so often encourage us to just accept the “new normal” as “what it is”. We can scare them. Accepting our limitations is sometimes their way of telling us to back the f*ck off and quit intimidating us. It’s a way of seeding doubt in our minds that makes us less confident, less sure, less cocky. It’s a way of making them feel less inadequate — and shifting the power structure of the working relationship from Alpha Us to… them.

Plus, all too often, they have lacking information and poor practices, so they are unable to produce the kinds of results their clients/patients need. They keep trying to achieve results with crappy tools and partial information, which is like trying to run a marathon wearing on sneaker and one roller skate. They keep trying, of course, because that’s what the insurance companies tell them they have to do, and that’s what their peers are telling them to do, and that’s what their industry is instructing them to do. But they can never get the results they’re looking for… which is no wonder, if they’re not willing to test the limits of what is “known”.

So they give up. Because they won’t look any further. Maybe they’re actively discouraged by the insurance industry, which only trusts “tried and tested” approaches. Maybe they’re put off by their peers who are jaded and cynical and uninformed. Maybe they lack intelligence and imagination. Or maybe they just get tired.

Personally, I suspect it has more to do with belief system and poor information, than it has to do with malicious intent. People are just ignorant, in the objective sense of the word. They just don’t have the right information. And not all of them are Type A personalities. So, good luck getting help from someone who is not Type A, when you are a person who’s ambitious, driven, and bound and determined to succeed…

Fortunately, it doesn’t have to be that way — or stay that way — if you’re a  Type A personality.

The Give Back program, which I discovered in December, 2010, has played an important part in my recovery. Just the stated belief that it is possible to recover from Brain Injury was a revelation, after being immersed in a sea of depressing messages like “Well, the brain can’t be changed past a certain point in childhood”… “You might get some of your functionality back, but don’t expect much more” … “You’ll just have to lower your expectations from life” and “Just be happy you’re doing as well as you are.”

It sorta kinda makes my blood boil, hearing all that weak-ass drivel.

Because none of it is true. Just because the charter members of Underachievers Anonymous can’t figure out brain injury recovery, doesn’t mean it can’t be done.

The Give Back materials really overcame those lame objections with actual case studies of folks who recovered successfully and went on to achieve great things. The program also gives you specific information and things you can do to recover. The most helpful tip had to do with building in a feedback loop for my daily life — recording things that didn’t go so hot, and figuring out how I could do them differently next time. I was really into that, for the first few years after I found the materials, but then I backed off on it. I’m starting up again, now that I’m beginning a new job that’s going to put new demands on my system, because it really helped me a great deal in the past, and I have every expectation that it will continue to help me as I move forward.

If you’re a Type A person with drive and ambition and the need to be constantly improving, you’re a perfect candidate for taking your recovery into your own hands and actually succeeding at it.

One of the things that’s really bothered me, over the past several years, is how people tell me now that I’m more mellow than I was, less edgy, less “Type A”. Now, I get that it’s an improvement that I’m not always gunnin’ for a fight, and I’ve backed off a lot of the aggression. But I have also lost the edge that used to keep me on top of things and moving forward. This, to me, is not an improvement. And the longer I recover, the more functionality I get back — and the more I realize I still lack — the more motivated I am to really kick it up a notch.

Discovering Reuven Feuerstein and the Feuerstein Method has been just the boost I’ve been needing to really move forward — possibly by leaps and bounds. Fundamental to the system is a “belief system that holds individuals to be modifiable, as well as amenable to registering and detecting adaptive changes.” That’s a belief I share — it’s more than a belief, it’s a known fact for me. It has been since 1983, when I came across a picture of rat brains that had been changed by being in an “enriching” environment. I’ve been convinced of the mutability of the human system for over 30 years, and I’m living proof that positive change — recovery — is possible.

And just as it’s possible to positively impact our own recovery, it’s also possible to impact others’ recovery, as well. It’s possible to create positive change — transform our surroundings — by our direct engagement. We have to know what we’re looking at, of course, and we have to know how things work. And we have to know how to effectively act for change. The beauty part is, by observing and being open and objective, we can learn as we go and adapt ourselves to our surroundings.

When you’re Type A, you have a certain kind of personality. You have a proclivity for achievement. Why the hell any non-Type-A person would tell a Type A person that something like brain injury recovery isn’t possible, is beyond me.

Never mind all that — On-Ward!

Here are the materials I downloaded in 2010, which you may find useful:

 

Tuesday… feels like Thursday

Losing track – in a good way

 

I’ve been reading a book that I’m really enjoying — Profiles of Power and Success by Gene N. Landrum, Ph.D. There are all sorts of tasty tidbits in there, when he talks about the fourteen men and women he chose to examine as transformational leaders in their respective fields. He also talks about what miserable failures so many of them were.

Napoleon graduated near the very bottom of his class in military school. Edith Piaf never learned to read music. Isadora Duncan, who pioneered modern dance, only had one hour of ballet training and no other formal dance training. Landrum says, “great achievement has little to do with scores on a test, but more to do with performance on the stage of life. Jules Henri Poincare scored at the imbecile level on Alfred Binet’s IQ test at a time when Poincare was universally acknolwedged as the world’s foremost mathematician.”

So, yes, I do feel better. Not that I want to delight in others’ misfortunes, but hearing about how many people who changed the world for the better had either no formal training in what they did, or performed so poorly in their training, gives me hope. Because it says there’s something else at work when it comes to making your life worth living — and that something else is us.

Spurred by my enthusiasm with this book, I have been giving a lot of really serious thought to where I am going to spend my energy in the next year. I have a number of projects I would like to start (some of them I have already started), but I don’t want to spread myself too thinly, and I don’t want to sink a lot of time and effort into things that won’t pan out. I started a big project last year that took up a ton of time and seemed to show great promise, but in the end, I was looking at a likely prospect of losing money, it would have taken up far too much of my time, and I needed to back off and not pursue it further. I may pick up again later, since I have all the infrastructure in place, but I need to really think it through for it to make sense.

It took up so much of my time… only to fizzle out.

This coming year, I need to be smarter about things. A lot smarter. A lot more strategic. Less flailing around and busy-work. Less running around from place to place, and more sitting and looking at what I’ve got, prioritizing everything, and deciding how I want to handle it.

I’m already off to a good start. I’ve lasered in on two Big Ideas I have which show some real promise for supporting me and themselves.

I’ve also identified a handful of secondary ones that I want to do, just because I want to do them. Those are my “passion projects” which are all about doing things that will benefit others, rather than supporting me. This blog is a passion project for me, as is my book on TBI SOS – Restoring A Sense of Self After Brain Injury.  Some things should be sold at a fitting price to people who value them and are willing to commit themselves to valuing them. Other things should be done with no expectation of return. TBI SOS is the latter. I need a balance of both, in my life. Yes, I do need to support myself and my work. But there are an awful lot of people suffering who need the help, and if I can provide it, then so much the better.

Anyway, I’ve been zero-ing in on my projects, culling the ones that take way too much time without giving much in return, and building up the ones that have a real chance of taking off. And in the past few days, I’ve made tremendous progress in the couple of projects I am focusing on. I have been planning and finding resources and getting clear on how I want to proceed. No more of the crazy running around from one thing after another. I’ve been doing that too long, and I’m tired of having nothing to show for all my work.

And it’s good. It takes the pressure off, and it also makes me a lot more productive. I’ve gotten so much done, just in the past few days, it feels like I have almost a whole week behind me. And it’s only Tuesday morning. I’ve been able to go out for long walks in the woods. I’ve been able to run errands. I’ve been able to lie down and take naps. I’ve been able to finish a big piece of a project I’ve been working on. I’ve come up with a bunch of ideas about how to streamline and automate my activities, using technology as my friend.

One example is with my blogging. I have a regular ritual each morning to sit down and write something pretty much every day. The intention is to publish something each day. But I don’t always have the inspiration or the time to do this every single morning. So, when I am feeling really inspired, I will write up a handful of posts, and then schedule them to be published at regular intervals, so I’m freed up on other days to do other things that inspire me.

And then I come back later to the writing, when I get my inspiration back. It usually doesn’t take long.

It really takes the pressure off. Committing to doing something every single day, can be hard for someone like me. Some days, it just doesn’t work out. But with different tools, I can overcome those blocks, and work around the limitations.

That’s what the folks in Profiles of Power and Success did. And if they did, so can I.

Onward.