Recovery Day… #2

Watch out… a “day off” doesn’t always mean good things are going to happen

So, yesterday I had a recovery day from my week before. More or less. I did some work in the morning and I took it easy in the afternoon and evening. I even got a nap and a walk in. The weird thing is, later in the evening when things were winding down, I had a melt-down and went off on my spouse over some stupid sh*t that didn’t amount to much of anything. And it was partly a misunderstanding, anyway.

It’s like someone put a match to tinder, and I was off — flipping out and really reaming them in ways that only I can do. Of course, it doesn’t help that my spouse has a bunch of issues of their own, and those issues come front and center whenever I start to get edgy. They grew up in a very edgy household, so whenever I get “that way”, all their old memories kick in, the old neurological wiring starts to fire, and they start interacting with me like I’m their abusive parent. It escalates rapidly, and all the while, I’m thinking, “I’ve got to stop this – I’ve got to stop this – I’m sliding into that hole again – I’ve got to stop the slide – gotta stop…” to no avail.

I can’t stop it. I say things I don’t mean, and they hear things I never say. It becomes a crying, screaming, shouting, stomping, roller coaster of acid madness. And the emotional hangover lasts for days.

Crushing. For them, as well as for me. The end result for me was that I felt like crap, mentally, spiritually, emotionally, and physically. And for my spouse, they — yet again — had good reason to fear and resent me. They couldn’t get away from me fast enough this morning – they have some business travel they’re doing, and they skedaddled promptly this morning.

Can’t blame them. I wish I could skedaddle from myself, in fact.

Down, boy

See, this is the thing that nobody around me seems to understand with TBI — that things get out of hand, even (sometimes especially) when I’m trying to stop the slide. I know things are getting out of hand. I can feel it. I know I need to keep things from getting out of control. I’m trying like crazy to get myself to stop, I’m trying like crazy to think it all through and protect the people around me, I’m trying to reason with myself and get myself under control before I do/say something I can’t take back, but no amount of thinking helps. It’s like there’s this wild junkyard dog lunging at the end of its chain, and it doesn’t listen to reason.

It rips the sh*t out of everyone, including myself. And the rips last for days with me — even weeks. Other people can forgive and forget, but I can’t get away from the recollection of how I was. I can’t get away from the reminders of how I talked and behaved towards my spouse. I can’t get away from the reinforcement of the fear and the anxiety around me, and the effect that has on my spouse’s life and health. They’re diabetic, and I am pretty darn sure that my TBI in 2004, and all the craziness that came out of it, played a significant role in their blood sugar going out of whack. I’m not blaming myself for them not taking care of themself, but I know for a fact that I have not been easy to live with for quite some time, and that can wreak havoc on a person’s glucose levels.

Not to mention their peace of mind.

I do pretty well with having compassion for myself and being forgiving and not beating myself up too badly after my episodes. The thing that gets me is the physiological after-effects. And this is the part that I think a lot of TBI recovery and rehab folks overlook — the subjective, emotional and mental effects of the physiological “flood” that swamps us. All that adrenaline, all that rage, all that violence (be it internal or external) soaks our system full of pain that manifests as depression and confusion and fog. And it can take a long time to clear it out. Days, in fact. Sometimes weeks.

Fortunately, I have all day today to myself to decompress, take care of myself, feed myself properly, get some exercise, and examine my life to see what the hell I am doing. I keep thinking that I’m getting so much better in my recovery and that I never have any problems with volatility anymore, but the fact of the matter is, I do. When I least expect them. This volatility is insane — literally. It is just like a wildfire that spreads quickly and takes over, and no amount of reasoning is going to stop it from doing its worst.

Ironically, it often happens when things have been going really well for a while. And it usually happens after a “day off” after a long and stressful week, when I have had a nap and the evening is approaching. I relax and take it easy all day, and I don’t look at my lists of things to do, and things are going well… until the evening, when I start to get antsy and “spring a leak” with all the churning, pushing energy inside me. All my pent-up restlessness spikes and shoots right out of me like wild solar flares — at whomever is nearby, which is usually my spouse, on Saturday evenings.

I suspect it may have to do with anxiety that comes up in me about the things I was “supposed” to get done during the day, but didn’t. I have a whole list of things I need to get done these days, some of them more critical than others. And when I don’t look at my list and figure out where I am in the process, I get extremely anxious and can freak out — like I did last night. I think I’m doing myself a favor by taking a break from the list, but it’s actually making things worse.

Bottom line is, I need my lists. I need to keep my bearings. And I need to learn to shut the hell up, when I feel myself getting going. I can be such an a$$hole at times. It’s not fair to anyone. I’ve gone off on too many people in my day, because my temper got the better of me, and it hasn’t helped me. People say they can handle it, but the fact is, they’d rather not deal with it. I’ve lost jobs over this stuff — good jobs. Jobs that kept me out of debt. I’ve been paying for my aggressive restlessness for years, now, and so has my spouse.

So, today is another recovery day for me. I’m all alone in the house, which is good. This wild animal needs to just prowl around in my space and let off some steam. Go out for a really good walk — not just a walk, a real hike. Up the side of the mountain and down again. Work off some of this energy. Give it somewhere to go that’s constructive and positive, instead of turning on me and everyone around me. Get myself in line again. And settle in to get some things done.

Not everything. But some things.

And take some naps. Not just one. Perhaps two or three. Short little 20-minute naps that refresh me and keep me going. Real breaks that get me out of the grind that takes over. Something good and substantial.

I also need to get out in the day. Part of the problem yesterday was that I was inside and by myself most of the day. I didn’t feel up to going out and doing things, like I usually do on Saturday mornings, and being relatively sedentary and isolated does a number on my head. I literally need to get out of the house and interact with other people, in order to stay sane. It’s a challenge for me, these days, because I haven’t been hearing very well lately, I’m dizzy and foggy, and I just don’t feel like interacting with people much at all nowadays.

But I have to get myself to do it. It’s not optional. I’ve got to do it. Push myself. Challenge myself. Make myself leave the house and even just go to gas up the car. Interact. Get out of my head and out of my house. “Taking a day off” is not something that’s very good for me, actually. It’s not a break — it’s a bit of a torture at times. It’s much better if I pace myself and do at least something useful and directed each day, especially on “days off”. Pushing myself a little bit to interact with others and take care of things is the one sure way I can make sure I’m not getting stuck in a rut and starting to believe all the crazy sh*t in my own head. That can happen so quickly. And the results are not that great.

So, yeah – my lists. Having everything written down in front of me only helps. It can be a little overwhelming at times, but in fact the challenge of making sense of it all helps to focus and calm me. There’s something about pushing myself just a little bit that clears my head, and that’s what I need. To push myself a little bit, focus in, and clear my head with the challenge.

Of course, then I can get into the whole overdoing it thing, and then I run the risk of turning into a crazy person like last night, but if I can keep a balance and not throw too many unusual and unexpected things in the mix, I can manage to keep my act together.

And make progress. Because it’s not just all about keeping things calm and level and uneventful. It’s also about making real strides forward to where I want to be and what I want to be doing with my life. It’s not just about maintaining — it’s about growing and improving.

That being said, I’m going to make myself a couple of eggs and have some good protein. My head is still foggy and dull, and I need a little something to perk me up. Protein does that. And it will get me up from this desk and computer… get me going in the direction I should be.

Yeah, I feel like crap — physically, mentally, emotionally, spiritually — after the scene last night. But it’s not the end of the world, and as long as I give myself time to really recover today — and ease back into what the next week is bringing in another 24 hours — I can recuperate and get my balance back.

And be a sane person for my spouse in the morning.

Onward.

Understanding the Trauma in Traumatic Brain Injury

It all gets to be too much sometimes

Several years ago (March, 2009, to be exact), I started thinking and writing about the connections between TBI and PTSD. I had it a lot of it figured out in my head, and I was going to write a great deal about it. But then I changed jobs, and everything kind of went to pot in the TBI-PTSD writing department. I did write something about PTSD/TBI Factor #1 – Proximity to a traumatic event, and I had all the others ones queued up in the back of my mind to write about. But I guess my distractability got the best of me, and I ended up heading down other paths of inquiry and extrapolation.

Now with the recent research at UCLA about the link between traumatic brain injury, post-traumatic stress disorder, even more attention is being brought to this (and let’s hope more funding follows). This kind of research is tremendously critical for TBI survivors, their spouses/friends/co-workers/employers, and society as a whole, for it adds a much-needed component to the considerations — namely, how TBI can totally screw you up in some unexpected ways. After all, you just hit your head, right? What’s all the excitement about? And why aren’t you getting any better…?

It’s a mighty strange thing, that we are at a juncture where we actually have to justify expanded research into these areas. Our society claims to be vexed over homelessness and crime rates – which also have a correlation with traumatic brain injury – rate of TBI is 7 times as great in prison populations as in society in general, and yet we are so cavalier about TBI (which also includes concussion) and PTSD.

More and more research establishes clearly that TBI plays a role in homelessness (see this article for a discussion)

… a significant number of chronically homelessness people [have] a history of Traumatic Brain Injury (TBI). . . . a doctor who has been treating the most vulnerable homeless people on the streets of Boston for 25 years, . . . estimates that 40 percent of the long-term homeless people he’s met had such a brain injury. ‘For many it was a head injury prior to the time they became homeless,’ he said. ‘They became erratic. They’d have mood swings, bouts of explosive behavior. They couldn’t hold onto their jobs. Drinking made them feel better. They’d end up on the streets.’ ” (USA)

and in the UK

a significantly higher number of homeless participants (48%) reported a history of traumatic brain injury than control participants (21%). Of those homeless participants, 90% indicated they had sustained their first traumatic brain injury before they were homeless.

And in prison populations,

“About 8.5 percent of U.S. non-incarcerated adults have a history of TBI, and about 2 percent of the greater population is currently suffering from some sort of disability because of their injury. In prisons, however, approximately 60 percent of adults have had at least one TBI—and even higher prevalence has been reported in some systems. These injuries, which can alter behavior, emotion and impulse control, can keep prisoners behind bars longer and increases the odds they will end up there again. Although the majority of people who suffer a TBI will not end up in the criminal justice system, each one who does costs states an average of $29,000 a year.” (source: Scientific American, February 4, 2012)

So, why are we even having these discussions right now? Why hasn’t it been federally mandated that concussion, traumatic brain injury (and for that matter PTSD) be addressed at the level that space travel was mandated in the 1960’s? If we can get to the moon because our leadership decided we would (some would dispute that we ever got to the moon, but that’s another discussion for another time), why can’t we find some uniformity and, well, intelligence, around issues of TBI and PTSD?

Why indeed?

Personally, I think part of the issue is how we approach the issue. We (in the US and in the West in general) are a highly specialized society with identified experts to whom we delegate the problem-solving tasks of our increasingly complex world. At the same time, we don’t offer uniform support to all our experts, because well, there just isn’t enough money to go around, their product is not uniformly high-quality, and they’ve got to compete for it. What’s more public sentiment may swing in one direction or another — or completely away from the subjects under consideration because they reek of “personal irresponsibility” that contradict our American dream of individuality and requisite self-reliance.

For example, if the general population doesn’t believe that traumatic brain injury (especially “mild” TBI) and post-traumatic stress are cause for concern because “it’s all really just a question of willpower and the last thing you should do is coddle someone who’s milking it”, they’re probably not going to pay much attention to the issue and demand that it be solved. When you think about things that way, they become issues of personal determination, and the impulse to help actually turns into an impulse to NOT help.

However, if it becomes clear that TBI (and PTSD) are truly medical issues which are tearing away at the fabric of our lives, no matter how hard we try to fix them, and they require additional medical and professional resources to address, then there’s a greater likelihood of the CDC and various funding sources to step up and take on the problems and issues and make the effort to arrive at some plausible approaches.

But I digress down the road of public policy and need to get back to connecting trauma and traumatic brain injury.

I think that a tremendous amount of excellent work has been done, thanks to leaders like Bessel van der Kolk, Peter Levine, and Belleruth Naparstek. I personally know a number of therapists who specialize in trauma — and there is no shortage of business for them. Our understanding of how trauma impacts individuals in childhood as well as adulthood has expended exponentially over the past 20-30 years, and a lot of suffering has been relieved.

At the same time, I do believe that significant areas have been overlooked with regard to major issues like Traumatic Brain Injury, because it doesn’t apparently “fit the profile” for commonly recognized predictors of post-traumatic stress. The predictors which accompany things like motor vehicle accidents, sexual assault, wartime trauma, domestic abuse, violent assault, obvious bodily threat, and your “standard issue” sources of post-traumatic stress disorders, which have been the focus of trauma research for the past 20+ years, simply aren’t the same as they are with (mild) traumatic brain injury. So, even though the word “trauma” is part and parcel of the TBI label, it gets overlooked all the time — and the people who get paid to pay attention to these things, and who make names for themselves studying trauma, just don’t get the degree to which (m)TBI is a chronic, continuous source of post-traumatic stress.

Traumatic brain injury — especially Mild traumatic brain injury — is a glaringly obvious precursor to post-traumatic stress experiences and disorder… IF you know where to look. But precious few people seem to be looking in the right places. Everybody wants a “deer in headlights” experience to trace back to. Everybody wants a “clear and presently inescapable danger” happening at one point in time, to pin the stress and disorders on. Everybody’s looking for that one, cataclysmic experience of life-and-death helplessness to help explain the disorders and stresses and dysfunctions that follow trauma.

It’s like everybody used to look for the big, significant hits in football to explain the cognitive issues… when all along, it has more likely been the the sub-concussive hits that have added up over time to contribute to cognitive decline and CTE in football players – one as young as 18.

What we’re missing, consistently and collectively, is the significance of small hits — the “little” traumas that occur throughout one’s life after TBI — the seemingly minor flubs and foibles that become part and parcel of our everyday experience after brain injury. On the surface, those mis-steps and mis-speakings may not seem terribly impactful, and for someone who is reasonably well-adjusted, they need not be a big deal. But for those of us living with chronic TBI conditions which amplify the impact of even the most minor emotions and reactions, even the little things can turn into big things. It has nothing to do with the objective severity of what happens with us — it is all about our subjective experience of those supposedly minor problems (and trust me, the more minor that you know something is when it’s sending you over the edge, the more stressful it is to deal with). It’s all about the internal neurological and biochemical reactrions that take place inside us, like a series of little explosives going off, one after another, releasing all sorts of stress hormone goodness into our systems, producing increasing levels of stress and decreasing levels of comprehension and acceptance.

When it comes to TBI, it’s almost beside the point, what the relative severity of our issues is. ‘Cause when you’re dealing with TBI and you’re already stressed from the myriad little things that go wrong over and over and over again that you have to keep working harder and harder to deal with and overcome, relative, objective severity means nothing.

Nada. Zip. Zilch.

Objectivity has no leg to stand on, because our internal circuitry is being fed a constant stream of messages that we have to go faster, work harder, be better… which plunges us into a tidal pool of stress hormones, day after day, week after week, month after year after decade, until our systems are chock-full of cortisol, adrenaline, epinephrine, and all those other biochemicals that skew our perceptions and actually shrink parts of our brains — the parts that help us remember and learn.

The thing that’s particularly traumatizing about this, is that a lot of it happens while we are aware that things should not be going this way. When you’re supposedly “okay” and you find all sorts of aspects of your life going wrong, and you feel helpless to stop it, there is that definite, pronounced sense of being a deer in headlights, or being unable to fully respond to what’s going on in front of you. When you go past the initial traumatic brain injury, and you wade into the morass of the aftermath, that is where the real trauma starts to happen. And it keeps happening. Over and over and over again. And unless you can get some help to 1) realize that things are not going right and you need to get some help, and 2) figure things out so you can come up with alternative ways of managing your life… well, you’re stuck in the path of a Mack truck on a regular basis, and you have no way of predictably getting yourself out of danger.

This, I firmly believe, is why the long-term prospects for mild traumatic brain injury tend to be even worse than people with moderate or severe injuries.The changes can be so subtle, so nuanced, that they are invisible to us, and we only start to notice them when things start to go obviously wrong — which can be months, if not years, on down the line after the initial injury. It’s baffling to many, but it’s pretty common-sense to me — over time, we “lay in” new neural pathways that are organized around faulty wiring, and our wiring gets hardened into crappy patterns and chronic confusion. It can take a monumental effort to turn that all around — IF (and this is a huge IF) you can actually find competent help to make the necessary changes. Right now, there’s a vast and gaping void where that need exists — for no reason that I can fathom. Why wouldn’t we as a society, a culture, a nation, throw our full weight behind sorting things out and getting people on a good track, before they can get set in their mistaken ways — and take themselves (and everyone who depends on them) down that dark road that too often leads to oblivion?

Why indeed? I think it’s primarily because people just don’t understand. Also, people can be willfully ignorant and mean-spirited. It’s more fun, frankly, to make fun of village idiots, than realize the true nature of their difficulties and step in to help. It’s also more fun, sometimes, for researchers and academians to bicker and tussle over theoretical territory and funding, than to join forces, ask transformational questions, and challenge their own most fondly held beliefs. It’s much easier for us to focus on ourselves, our careers, our reputations, our legacy, than to put that aside for the sake of greater good.

And when you’ve built your reputation around one set hypothesis and line of inquiry, the prospect of expanding that in different directions is, well, unappealing to say the least.

Plus, the system just doesn’t function that way. You can’t get funded for one experiment, then expect people to welcome you with open arms when \you drop it and run in another direction entirely. And if you collaborate… who will get the credit? Who will share the funding? The system doesn’t help, in these respects.

Outside of the system, however, there are plenty of places to develop and grow. Of course, then you run the risk of falling into the company of people who invent their own criteria of success, who concoct their own “standards” and who declare victory by making their own medical rules and playing by them. There’s a fine line between innovation and hackishness, and with the availability of equipment and the relative ease of publishing, with the right money, methods, and marketing, you can invent a whole new field of research and treatment — without the burden of peer reviews or quality controls… all in the name of “innovation” and “groundbreaking discoveries”. Science? Who needs science? I have a license to practice, my own corporation, a lawyer, an accountant, equipment, and a website. What do I need with science?

But again, I digress. Or perhaps I don’t. Ultimately what it all comes back to is the willingness and ability of the thought leaders in TBI and Trauma research to put their heads together and be able to collaborate rather than compete. The mostly excellent post-traumatic stress book by Rober Scaer, MD, The Body Bears the Burden, which is full of great trauma information, falls squarely into the trap of competing with TBI information to explain away the difficulties that take place after a motor vehicle accident.  And that serves no one other than perhaps the author’s ego. In discounting TBI issues, the author misses a truly valuable opportunity to expand on his hypothesis and instead hobbles it. Taking a this-OR-that approach with TBI and PTSD only contributes to the confusion, because it ignores the feedback mechanisms of our entire experience, that exacerbate our difficulties, at the same time opening the door to even more problems because it’s not attacking them head-on.

Likewise, my neuropsych has been pointedly reluctant to discuss anything relating to PTSD. They just are not going to go down that line of enquiry. From what I can tell, they are wholly focused on a TBI-centric approach. It’s been profoundly helpful to me, having neurologically based approaches. At the same time my own work with my own post-traumatic stress issues has probably contributed a LOT to my progress and my continued recovery.

No, not probably — I know it has. The irony is, my NP occasionally says that they wish their other patients were doing as well as I am, and they openly marvel at the progress I’m making. But will they talk about trauma and post-traumatic stress? Not on your life — perhaps/probably because to venture into that area might overstep their professional expertise.

But we HAVE to overstep these bounds. We just have to. TBI feeds PTSD. PTSD makes long-term, unresolved issues with TBI (especially mild TBI) all the more likely. This is the understanding I wish to heaven I could bottle up and distribute to everyone who suffers “for no apparent reason” with ongoing mild TBI/concussion issues, as well as those who intend to help them. When we fail to see how each contributes to each other, we short-circuit our ability to heal and move on. We keep re-traumatizing ourselves… and the more backlog of stress hormones we have in our system, the more it impairs our thinking — and our living.

There is just no way around it. But people don’t seem to get the connection.The irony is, we know about the effects of chronic stress on the human system. And we know how to measure this stuff. Once we know what the deal is, developing adequate responses to chronic post-TBI stress would not be rocket science. There are many, many effective, proven ways to deal with stress. We just have to have some sort of scientific basis to get it out in the mainstream. People generally pay closer attention if something is based on research or actual science.

But I’m sure it would be a fairly straightforward thing to study. All you’d have to do is have subjects who have sustained TBI agree to live their lives “normally” and gather data about their experiences and their stress levels — have them log their life events and their experiences of those events, and also measure their stress hormone levels at regular points throughout the day. It wouldn’t even need to be particularly invasive or disruptive. I believe you can measure those levels through saliva. You’d just need to have a good process in place, and you’d need to have a way to ensure that your test subjects were keeping to the protocol. Hell, I’d do it myself, but at $80/pop, the idea of testing myself at regular intervals throughout the day over an extended period of time is prohibitive. But it would make an interesting study.

Anyway, as I was saying when I started… back in March of 2009, I started writing about how TBI and PTSD are intricately interconnected and form a feedback loop that self-perpetuates over the long term. With the recent research coming out about TBI and PTSD being interconnected, it’s opened the door a bit more to discussion about what exactly that means and what we can do with the information. I am particularly interested in the logistical complications that stem from this interaction — and how the interactions are aggravated by the logistics of just living your life after TBI. My own life is a bit of a laboratory in this respect; fortunately or unfortunately, I’m not under the microscope of an outside independent party who can quantify the data and publish the results.

But at least I can do what I can do. I have resolved to continue writing about this subject in greater detail, just in case folks on the science side happen to stop by and pay a visit. Who knows? We may all end up talking to each other eventually. And we might actually figure out some solutions to these problems which affect — in a very real and daily way — ALL of us.

Everyone is different, yet you are not alone

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New video – the Confabulation Kid

I’ve recently discovered some websites online that let you make animations. So, I made a little animation called The Confabulation Kid Gets It Wrong

I wrote a post about this subject a couple of years ago: Growing up with TBI – The Confabulation Kid, and confabulation has been an issue for me, as long as I can remember. One of my siblings’ kid has some neurological issues from an injury when they were little, and they are still having some trouble. I can see a lot of myself in them, and I really feel for the kid. I’m not sure what to do or how best to relate to them and their parents… if I should say anything to them about their kid’s issues. My TBI is not common knowledge in my family, because people just don’t get it, and the discussions I’ve had with people have been so hard when I have had them. So, I quit discussing it. The last thing I need, is for my family to think I’m even more of a problem than they already do. My parents got really upset and bent out of shape when I told them about what I knew about my injuries. They’ve treated me differently, ever since I told them. My one sibling I told, too, has been more distant from me, ever since I told them. Having the rest of my family back off from me, just when we’re starting to get along much better than ever, is not something I want to do.

But being around my family and seeing the next generation of brain injury survivors coming up reminds me so much of when I was a kid. I was always getting things turned around when I was younger… mixing up stories, mixing up facts, mixing up things I’d read in different books and magazines… generally making a mess of things  I tried to do, much to the consternation of people around me. They all thought I could do so much better. And I could. But the results often were very different from what my true potential was.

And nobody knew how to help me.

Folks didn’t try to help me — they didn’t know how. Instead, they used to really get upset with me. Upset… angry… frustrated… afraid.

I hate when that happens!

The afraid reactions were the worst. I felt like I had done something to harm my loved ones, and it pained me terribly. It pissed me off, too. Because I felt like I was being wrongly accused of stuff I had not done intentionally. It made me so angry, when people assumed that my confusion was a deliberate attempt to deceive and confuse others. I wasn’t gong out of my way to make life difficult for others, but they treated me like I was. And I got such an attitude after a while. Years and years of being treated like a liar and a cheat and a faker will do that to you, I suppose.I’m not excusing my crappy attitude (which I have since overcome), but there was a pretty good reason for it.

I still think of this often – especially this past weekend, when I had more time to spend with my other BI family member. They also tend to forget things and get them turned around, and they have the same mis-pronunciation issues that I had when I was a kid — probably because they spend most of their life locked inside the safety of their own books, their own ideas, their own world which they’ve created. It’s much easier to create your own world, when the world outside your head is not only confusing to you, but nearly impossible to interact with.

I’ve been thinking about confabulation a lot, lately, because it’s still a problem — even after all these years. When I’m tired or stressed, I tend to get my facts turned around. I tend to get nervous and rush, which is the worst thing I can possibly do. I really mess up. It’s not that I do that much worse than everyone else when I’m “off”, but I definitely do worse than I feel like I should do. So, even if others don’t notice (though they sometimes do), I notice. And it’s kind of rough to handle.

The one thing I have in my favor is that I’m aware of the issues, so I can manage them. I can keep an eye out for them and make sure I don’t get myself into situations that are sketchy for me and my confabulatory tendencies. That helps. It helps a whole lot.

And I wonder if I should maybe reach out to my siblings and see if they need help. Hell, if they’ve been living with a kid who’s had a brain injury for the past 12 years, I’m sure they’ve seen it all, already. So, maybe they’re exactly the folks I should talk to… I’ll have to think about that.

Still more quick responses to loaded TBI questions

What lies within...

This continues my little series of quick answers to queries people have entered into search engines to get here. You can read the previous posts here:

• Quick responses to loaded questions
• More quick responses to loaded TBI questions

 

1. tbi+sympathetic – The sympathetic nervous system is a wonder of nature. It’s what keeps us alive and safe from mortal danger. It’s the fight-flight-freeze system that is triggered by some sort of threat. When it’s balanced, it’s very useful. When it gets jammed in gear and is constantly engaged — like with PTSD or a lifestyle filled with constant excitement — it can really do a number on your central nervous system as a whole. I’ve written about this pretty extensively in A Perilous Relief, which talks specifically about how our sympathetic nervous system can do a number on us. See especially Wired to Survive and When Survival Backfires. The important thing to keep in mind is that trauma can really do a number on your sympathetic nervous system, keeping you constantly “on” in a perpetual state of vigilance. With TBI, that “on” doesn’t just happen because of an initial injury — it happens because you can end up having one mess after another happen, thanks to the TBI, and that can keep you on perpetual alert. Personally, I think this is why TBI tends to get worse over time. It’s not the initial injury that’s always the problem — it’s the problems that arise from the injury over time, and the way our minds and our bodies process those events, that does a number on us.
2. tbi sleep – TBI can make you want to sleep all the time. It can also keep you up or keep you from staying asleep. TBI and sleep do not always go together. I have had to make some significant changes to my life in the past years, because of my fatigue levels. I have started taking mid-day naps, and that has made all the difference in the world. When I nap during the day, I am much less likely to eat junk food, veg out at work instead of working, procrastinate, and do all the things that get me in trouble. It also makes it possible for me to end the day without being completely exhausted.
3. mild tbi recovery – Don’t let the “mild” fool you. The original injury may not have been that dramatic from the outside, but the ongoing consequences of it can be a real challenge. Recovery from mTBI is probably one of the most challenging — and most necessary — things you can do in your life. But you’ve got to make the effort. Because the after-effects can wreak havoc with your personal, professional, financial, physical, emotional, and mental life and trash everything you have — for no apparent reason. It is well worth the time and effort to learn all you can about it and do all you can to further your recovery.
4. tbi student point of view – Either a student sustained a TBI, or a student is studying TBI. If you’re studying TBI, I certainly hope you don’t get caught up in the school of thought that says “You have to give up on living your life, after TBI, because you’ll never be the same.” The thing is, over the course of our lives none of us stays the same. Ever. Treating TBI as yet another life change — like marriage or the birth of a child or the death of a loved one — which demands new learning and new skills and tests your limits, is a whole lot more helpful than scaling back your expectations in life and deciding you’ll never be 100% again. 100% of what? When are any of us ever 100% of anything? Times change. People change. So what? Live your life.
5. tbi and psychosis – Uh, yeah. It happens. I think (though I’m not a medical professional) that there are several reasons for this — brain chemistry may change because of TBI, and also the added stressors of life after TBI can set people off. Obviously, if a brain is injured… and if it undergoes the kinds of degeneration that we see with professional football and hockey players… there may be complications. It’s my sense that additional stress of living with an injured brain (without proper help and adjustments to how you do things) doesn’t help and may contribute to degeneration. But I’m no expert. Especially when it comes to psychosis.
6. what is the worst pain you can have from a tbi – Take your pick. Migraines. Crippling body pain. Photosensitivity that makes sunlight feel like it’s a knife cutting through your brain. Sensitivity to noise that makes your head feel like it’s going to explode when you hear certain frequencies. My favorite is tactile sensitivity, where anything that touches my skin feels like it’s burning and ripping the flesh from my bones. My forearms are especially sensitive. Now, come to think of it, I’m not sure that TBI is the source of the tactile issues, but considering that I’ve had the issue as long as I’ve had other TBI issues, I haven’t been able to separate them out.
7. activities to do with friend recovering from tbi – Do things that are FUN! And that they can do without putting themself in harm’s way or screwing up and feeling like a retard. The important thing is to not over-do it. Fatigue is a major buzz-kill, and even the most enjoyable activity can rapidly become hell when your system is on overload and you start to melt down. It might be a good idea to start out small and build up as you go on. Rent a movie on DVD that you can pause or stop if they get worn out. Go for a drive, and then go home and take a nap. It’s often a good idea to plan around rest times, or do things in places where you can step away and take a break if things get too overwhelming or they need to catch their breath.
8. head trauma and anger issues – I’ve written about this a lot. Visit https://brokenbrilliant.wordpress.com/?s=anger%2C+temper&submit=Search to see a variety of posts.
9. mental illness and head trauma injuries – See #5 above.
10. confabulation head trauma – This is a major pain. See Growing up with TBI – The Confabulation Kid. The worst thing about confabulation — getting turned around and confused about details without knowing it and combining different ideas in ways that don’t make sense to anyone but you — is not only embarrassing, but a logistical nightmare. Seriously. When you are “100% sure” of something, but it turns out you’re 100% wrong… and it happens over and over again… you can’t help but doubt yourself and wonder if there isn’t something seriously wrong with you.
11. sensitivity to light after head trauma – This happens. It’s a pain. Wear sunglasses whenever you need to. Don’t worry about what other people think. Irlen lenses may help.
12. difference between a concussion and a brain injury – The way I understand it, concussion is a brain injury — but the majority of them clear up after a time. Sometimes days, sometimes weeks. A traumatic brain injury is more lasting — post-concussion syndrome is often used to describe it, probably because the expression “brain injury” freaks people out.
13. traumatic brain injury and mental illness – See #5 above.
14. after a traumatic brain injury you are a different person – Yes, this happens. It’s happened to me several times. And frankly, I do miss the “old” me — the me that used to be so quick with picking up new things, the me that used to not question every single thing I do, the me that used to be so even-keeled and steady. But we all go through changes, and we all become different people over time. Think back 10 years ago — were you the same person then that you are now? If so, I worry about you. We all evolve. And we all have crap happen to us. The trick — for me — is figuring out how to make it work in your favor. It’s not always easy, and sometimes the best you can do is just make it work somehow. But if you get stuck in trying to go back to how you were, you can waste a lot of time, and also miss out on the new person you can become.
15. aggression and traumatic brain injury – This happens. A lot. Aggression can happen because a person is tired, feeling threatened by someone or something, their impulse control is shot, they have a chemical imbalance, or they just don’t realize how they’re being. I have found it helpful to “head it off at the pass” by staying reasonably rested, doing positive reinforcement for myself (“Yes, I can do this…” “No, I am not an idiot)), and learning to step away when I am beside myself. I can get extremely aggressive with people, if I’m not careful. Times of fatigue and confusion are particularly challenging, so I’ve tried to keep an eye out for them and either prevent them from occurring, or do damage control by walking away. My spouse has also learned not to keep at me, when I am “in a state” — that just makes things worse for everyone.
16. “traumatic brain injury” and verbal abuse – see #15 above. Please remember, you don’t need to live a life of verbal abuse just because your loved one has had a TBI. Do they even know they’re being verbally abusive? I didn’t, until my spouse told me I was.
17. history of traumatic brain injury and anger problems – See above
18. brain injury and constant complaining moaning – This can happen. The TBI survivor may have been a whiner before, and their TBI made it worse. Or they may have developed this trait after the injury. Some people become impossible complainers after TBI — they may feel like there’s nothing they can do about the situations in their life, so all they can do is complain. Personally, I can’t stand complainers and people who moan and bitch all the time. But I’ve done my fair share, so I’m not one to cast stones.
19. career change after brain injury – May be necessary. If you used to do work that required a lot of eye-hand coordination, and now your abilities are lost, you probably need to look for other options. I had to make a career change, but fortunately I was able to actually move up — out of pure programming work and into more project management type work. It suits me better now. Remember, just because you have to change careers, doesn’t mean you have to be set back. You might actually be able to move ahead.
20. can a brain injury make you crazy – Yes. In more ways than one. But it doesn’t have to. Most of all, it can make you feel like you’re crazy, when you’re really not. Just tired and turned around and moving too quickly.

March is Brain Injury Awareness Month

And this month, the Brain Injury Association of America is putting a special emphasis on concussion with their campaign “A concussion is a brain injury. Get the facts.”

I’m really happy they’re doing this. As someone who has sustained a number of concussions in the course of my life — several of them during sports events — this topic is near and dear to my heart.

The more we know about it, and the better trained coaches are to recognize and respond to these events, the better off we will all be.

Because concussion doesn’t just affect the individual who’s been injured. It affects all the people they interact with, their families, their teachers, their peers. And in the long run, it can affect society on a very large scale. Violent crime and repeat offenses have been connected with TBI,

About eight years ago, a study was conducted which tested the hypothesis that TBI is related to violent crime. What they found was that more than half of the participants in the study (half of whom had been convicted of domestic violence, half of whom had no convictions) had sustained a TBI — the violent offenders had had more severe injuries.

Knowing about TBI and responding appropriately to it is important not only for the criminal system, but for all of us in everyday society. Whether it’s dealing with anger management issues, attention issues, poor performance which cannot be explained any logical way, or a host of other issues that come up after TBI (sleep issues being a big one for me as well as many others), the after-effects of TBI (even “mild” TBI) can have dramatic and long-range impact on many, many aspects of our lives.

And since we know, deep down inside, that none of us is really an island, we can safely way that individual problems can and do become collective issues.

So the more we know about TBI as a whole society, indeed, a whole world, the better equipped we can become to respond appropriately to it.

I hadn’t actually intended to write about this today, but m reminded me that it’s Brain Injury Awareness Month, so I’ve got to make mention of it.

I guess maybe I’m supposed to give more thought to the other things I was going to write, before I write them.

All good 🙂

Wish List Item #1: Consistent quality information about TBI

m had some extensive comments to one of my earlier posts — good stuff that bears repeating:

…. Over the past few years I have seen the quality and availability of information increase exponentially. As I mentioned brainline.org is a great resource. ABIN-Pa and BI-IFEA are two other grassroots organizations – one a local chapter that is very active and the other a web based group with many subset topics with extensive memberships and resource links. And the DCOE has tons of information, including many daily information bulletins and news updates on research, and studies.

I had heard about the BI-IFEA from Kathe Perez, but since it’s a LinkedIn group, which is part of a professional networking site, I’m reluctant to even go close to it. I’m on LinkedIn, but there is no way on earth I am going to reveal to the larger professional community that I’m a multiple TBI survivor. In these economic times, I’m not taking chances with people’s tolerance and enlightenment levels. It’s just too risky. It’s a shame I can’t get to their resource lists. I’ll have to check out the DCOE site. At first glance, it looks quite good.

The Brain Injury Association of America has a very deep site and many individual states have great BIA sites with lots of material, presentations, white papers, events, video clips etc as well as links to site specific topics – Wisconsin, NJ, New York, Pennsylvania, California, Kansas are just a few of the state groups that have extensive websites. I am also involved with a project to create a single point of access/repository for all materials produced or available through these individual brain injury organizations creating a consolidated library of information for free public use.

Thank heaven for that! You go… I’ve been thinking about how much we need something like that — a clearinghouse of all the collected information from the different BIA chapters. Having it segmented out from state to state is tremendously frustrating. From where I’m sitting, there should be a central BIA database from which all the chapters pull – not individual respositories. Have a decent data warehouse — at the very least, a DB with meta data which indexes all the collected information and links to it, for common access — and break out the individual state-specific info based on a field in the DB. Please, please, please enlist the help of a competent data architect to design the DB  — I’m assuming, perhaps erroneously, that you’re not such a person. Having a properly designed and normalized database for this can make everyone’s life a whole lot easier. I’m happy to help with the DB design (I’ve done a bit of it, myself, in my day — for large-scale enterprises with millions of customers — scale, baby, scale) so let me know if I can contribute somehow. Hmmm… now you’ve got me thinking… I’ll have to capture what’s coming to mind.

Individual hospitals that are part of the Models of Care System produce a large number of research reports and papers – available through their individual sites, the BI Models of Care site and through the COMBI site. The Dana Foundation has a lot of brain research information. And then there are special sites like Give Back Orlando etc.

And here’s yet another one of my frustrations — there’s all this great information out there, but it’s not generally available to people, unless they know what to look/ask for… or they connect with another person who has that specific knowledge about the sites. Ugh – it’s just so frustrating. Will a returning vet understand how/where to look — or their spouse? Or their significant others/family/friends, etc? And if they do find their way to the info, will they be able to get to it, to navigate it? It’s the eternal issue with the online world — figuring out what info is where, and how to use it. As much as everyone likes to come up with their own site design, it would be nice if folks could agree on a best-practices information architecture, especially with regard to TBI information. And then we have the issue of the content itself — is it scholarly, academic, accessible to everyone, written for the general population… what? Even if you are fortunate enough to find something, can you actually use it?

Is the information quality? I’d say for the most part yes, it comes from studies and current research and people in the field. Some sources are more open to ‘outside the box’ stuff such as HBOT, TCM, neurofeedback, meditation, yoga, etc etc. And some are more conservative in their approach. Generally special interests groups are NOT involved – such as the pharm industry – but of course any given research group has bias and their own perspective. It doesn’t invalidate their data but it may make it more applicable to an individual demographic or subset. How much does commercial money influence people? As much as it does with heart medicine, diabetes, etc etc. – that is to say that they give more money for certain kinds of research. But the range of studies is promising and if the results yield something positive, the money will likely follow.

Yes, quality information is key. But again, can people use it? I think there should be some sort of hierarchy established, some sort of ontology of sorts, around the type of information that’s out there.

As for ‘outside the box’ therapies, if they work and they aren’t dangerous, I think they can be an important part of recovery. Some of the more fringe treatments worry me, and I tend to be concerned about extremes of scientific/medical rigor — folks that are totally into it, can let it keep valuable treatments from the population, while folks who want to just get treatments into the hands of the needy may bypass the “quality assurance” stage. Conundrum! I think there needs to be a middle-ground somewhere.

Regarding commercial interests, I was thinking more along the lines of rehabs plugging their own flavor of TBI rehabilitation, to attract new patients. Or doctors who are proposing radical new treatments which may or may not work — I’m thinking here of  Dr. Daniel Amen and his SPECT-scan-based approach. Maybe it works, maybe it doesn’t, but “It requires the injection of a radioactive material,” which I do not find particularly appealing. I had an MRI and they gave me a contrast agent which made me ill (and I’ve read it may have a bad effect on my kidneys). However, someone who is desperate for help, might go down that route — “Shoot me up, baby! I’m suffering, and nobody gives a damn!”.

This is just one example I can think of, off-hand. Given that CAM or non-traditional healing is generally not covered by insurance, and people are prepared to pay for it anyway, it opens the door to even more questionable stuff, which people may feel is worth the risk and the expense, because they cannot get any sort of help or information anywhere else.

Personally, from what I’ve observed among friends and acquaintances, people are willing to put up with all sorts of “treatments” from alternative “healers” in no small part because the “healers” are so willing to share information, and they genuinely care for the people they’re working with. One example I can think of, was an “aesthetician” I once met (read manicurist and pedicurist and beauty salon owner) who wanted to do more for her clients, so she went to some workshops and took some classes, and started representing herself as a “cranial sacral practitioner” — just because she did laying on of hands on people’s heads and lower backs. True story. And scary.  Care is so very important — but it needs to be accompanied by intelligence, competence, integrity, and quality control.

Having good information available to people who need it in a way that’s accessible is an important first step.

I’m sorry… I think?

I’ve been thinking a lot about my reaction to the post about the BIA booting a blogger from their conference. And I’m wondering if I should regret my hot-headed reaction.

On the one hand, I have received tremendous help from the BIA in some respect. On the other, I have heard stories like this — and other accounts, where people were actively discouraged by the BIA from saying that you can recover from traumatic brain injury.

It’s a mixed bag. As most things with people are.

The thing is, though, the Brain Injury Association is more than a person. It’s a collection of persons which professes to assist other persons. And as such, if it’s going to truly assist, I would think they would welcome the presence not only of a member of the press but also someone who has been impacted by brain injury.

Or maybe they’re wary of brain-injured folks in general, knowing what they do about “us”…?

Who can say? One of the things I’m taking away from this is yet another reminder of how hot I can get on short notice. And it warns me to check myself periodically, to make sure I don’t go off the deep end. It reminds me I’ve had multiple concussions, multiple mild traumatic brain injures… and as such, I owe it to myself and to others to measure my responses carefully, and weigh the possible effects/consequences, before I let fly.

I had considered taking down the post from before, but it’s a valuable learning/teaching lesson. So, I’ll leave it up there, warts and all.

I guess we’ll have to find TBI information elsewhere

Note: I’ve added to this thought here: https://brokenbrilliant.wordpress.com/2009/11/24/im-sorry-i-think/

Check out this post about how a blogger/journalist was treated at the Brain Injury 10^th Annual Neuroscience Conference. Read it, and then come back.

It just boggles the mind. Who’s the brain-damaged one in this picture? Surely, not the blogger, to all appearances.

In all fairness, I have no idea what prompted the response like that, and I’m not sure what was behind all the hostility, but really… I just don’t get it.

This highlights for me one of the current tragic travesties of brain injury survival and recovery — the folks who profess to help us, live off in a walled city of sorts, doling out shreds of carefully guarded and dispensed information in such small pieces… and then they issue disclaimers about “everybody’s brain is different, so you can’t really listen to this piece of information”.

It’s maddening. And only rarely does someone like me come across someone like my neuropsych, who is actually committed to the relief of human suffering. Imagine that — someone in the health-care industry… who cares. And not only cares, but does something about it.

Can I tell you, if I could, I would nominate my neuropsych for sainthood, a Nobel Prize, a Guggenheim Fellowship, and a truckload of cash from the Bill and Melinda Gates Foundation, so they can continue their excellent work — and possibly train others to do like them. I am extraordinarily blessed to have the help of someone who is intelligent, competent, compassionate, and not sitting astride their cache of information with an AK-47 in hand to ward off any “info pilferers”.

People are suffering. Thousands, even millions are impacted, both in terms of being injured and being friends/colleagues/loved-ones of TBI survivors. Who in their right mind and right conscience can withhold lifesaving information and advances from people whose very injury makes it next to impossible for them to even understand that they have been injured?! Where is the justice, the sense, the sanity, the humanity?

It boggles the mind.

So, let’s all blog about it.

Thanks, rewiringangel, for writing and publishing about this.

Or, perhaps more accurately, can LIVES be saved?

I had some feedback from one of my posts yesterday about Bob Woodruff’s recovery from TBI.

I didn’t like the article at all – in fact I felt it did a HUGE disservice to brain injury and rehab – it gave the impression that there were these wonderful cognitive programs that could restore people to their regular functioning in a relative reasonable period of time, that these services could be tailored to everyone’s particular needs, and that so much has changed that brain injury is ‘curable’.

The reality:

The is little funding still for most services, most insurance plans cover very little especially in cog rehab – which may be needed for years to be helpful.

Recovery of any kind is YEARS – not months, not a year or two but YEARS.

There are no miracle programs – this is slogging through a lot of really frustrating activity, going round in circles, making mistakes over and over and over, training yourself to be disciplined about organization, planning, memory skills, rethinking your life career etc

While  I appreciate the Woodruffs bringing attention to the issue Bob Woodruff got top ranked care – the vast majority of people DO NOT receive ANYTHING like that – they may get a few months of cog rehab, some PT, and a year of neuropsychological counseling. The existing services for TBI are terrible, un-coordinated, cookie-cutter, short term, and severely underfunded. 90% of the survivors DO NOT get any thing that is customized – most do not get even half of what they need that would truly empower them and enable them to have productive lives with true quality of life
VERY little is still understood about tbi – especially mild tbi. There are probably many many people who have TBI’s and don’t recognize it as such – they are just considered ‘moody’ or easily distractible or have other issues in relationships etc. We know virtually nothing about how the brain works and organizes data, repairs itself or re-organizes after a trauma. Much much more research and money is needed to allow professionals  to understand tbi, provide better tools for helping people recover (whatever that may mean), better ways to diagnose and to eliminate the stigma involved. 80% of tbi survivors do not recover their previous employment levels, and equal numbers experience loss of spouse, family and or friends, NO ONE wants to tell a prospective employer they are a survivor. Most tbi survivors do not write books or go on tours or have understanding supports – they end up financially destitute or in severely reduced circumstances, alone, struggling and often develop addictions as a result.

The article presented a rosy cheery picture of tbi – just like having a hip replacement  – tbi is a life-changing event and is underfunded and not understood. there are no ideal treatments and many people end up overdrugged – even by the ‘professionals’. I get frustrated by such articles because they mislead.

Some folks in advocacy agree with me and others don’t. Some feel that any attention  to TBI is helpful and that at least by making it less strange it encourages people to accept that many people do have tbi’s and are ‘normal’.  So I admit that my opinion is not universal. I will also say that this was the second brain injury article by that paper that focused on a well-connected individual who got amazing health care – and in this other case that person did make a phenomenal recovery – again, the kind of recovery that 99% of tbi’s do not make. So some of my frustration is also based on that. I would love to see a “Ordinary Jane or Joe has a tbi” story – and what it means to lose your career, to lose your home, to have a changed marriage, to try and re-create a self, to have 3 months of cog rehab and told you are ‘fixed’ because your insurance ran out – to struggle in school, at work, to lose your job – all these things that are what happen to most Americans – including our Vets.

Healthcare is a critical issue in this country and tbi is part of that. It will be ignored and forgotten if the true loss of lack of care is not made clear.

You know… it’s true. The vast majority of us who sustain these types of injuries never get the help we need — many of us never even realize we need it… until too late (or almost). Personally, I consider myself extremely fortunate to have put two and two together before everything fell apart for good. I was awfully close to the edge, now that I think of it. I dodged a bullet. And I am incredibly grateful for the combination of fate, the world wide web, and my local Brain Injury Association chapter, for helping me put this together… as well as to my various therapists and friends and strangers who had the right info at the right time, who kept me from tripping and tipping over that very precipitous edge.

Not all are as lucky. And I have been lucky. I am very much aware that I could easily have ended up in much tougher straits than I am, right now. It was almost a fluke, that I even got a clue that I needed help. And while I have had to work my ever-loving ass off to get the help I need, and it feels like it’s been a long time coming, and I still have a long way to go, at least I have had the personal resources to launch into this quest for clues.

A lot of others don’t. They just get lost. Pushed to the margins. Out of sight, out of mind, out of luck.

I hate to say it (and I’ve felt a bit guilty about thinking this), but I’ve never been that comfortable with Bob Woodruff’s story and the way he’s been portrayed as a kind of “poster child” for TBI recovery. It’s like they’re not telling us the whole story — like how he really is at home, what his moods are like, what his interpersonal skills are like, what his memory is like.  He’s an attractive public mainstream figure, who has received the best treatment possible and works in a field where his performance is not only scripted beforehand, but edited between the time he does it and when it is aired to the rest of the world.

I’m reluctant to say any more about him, because I am not thoroughly familiar with his work, and what I’ve seen of him has been positive. No-way, no-how do I begrudge the man his recovery or his restoration to broadcasting work. He’s covering some really important stories that I enjoy watching. But I wonder how much similarity his experience actually bears to my reality. Or to the reality of countless other tbi folks. I wonder how his irritability/anger management is, if he has constant ringing in his ears or constant headaches or other chronic pains. I wonder what truly goes on in the privacy of his own home, where no cameras are rolling and no editors are deleting the segments where he’s struggling to find the right word or remember what he was going to do when he walked into the next room. I wonder what his life is really like.

One of the things that I think may have helped him get back to work, is the fact that he works in broadcasting. Being involved in broadcasting, myself, I know how helpful it is to have a script to go by, when you’re doing your job. I often create and use “scripts” in other situations, like when I go on job interviews, or I am leading a meeting and following an agenda very closely. Having a scripted line of work (or work that follows specific guidelines, like strict meeting agendas, or has a heavily-project-managed element to it) makes getting back to work — and re-integrating into society post-injury — a lot more straightforward, in my mind.

It’s never easy, of  course, but if you know what you’re going to say and do ahead of time, and you have ample opportunity to practice, and you don’t have to be “on” for more than the length of the take/recording… and you get to edit out the parts of your performance which aren’t that flattering… well, I can see how you could present a really excellent picture of miraculously restored health after what was supposed to be a fatal accident that would — at best — leave you a vegetable.

Thinking back to the positive tbi-is-fixable article in Parade, I’m struck by the emphasis on the idea that outside therapies are capable of restoring functionality post-tbi. I don’t doubt that having someone work with you can be of tremendous help, but from what I’ve seen and experienced, what you do for yourself, with yourself, by yourself, can be a critical factor in the degree of your success.  Of course, it is important to get outside help — especially from trained professionals who have made the study and treatment of tbi their life’s work. But I also agree with the Give Back Orlando materials about outside therapy only going so far — at some point, the insurance gives out or the prescribed treatment runs is course, or therapy is no longer available or an option for you.  You then have to step in and run things for yourself, or you’re just not going to get that far. Reading about long-term efffects of TBI, what I’m struck by is that folks may improve over the first several years post-injury… but look at them 10-20 years later, and sometimes they’re really struggling. I think the critical piece in this is self-reliance and the ability to do self-therapy.

Personally, I suspect that my own self-reliance has been the secret to my repeated recoveries over the years — never having any help, and being forced to fend for myself. Not that I had any choice, mind you. My first injury was 36 years ago, and nobody had a friggin’ clue about mild tbi, back then. A year after that, when I had another more significant injury, it was worse, but not bad enough to send me to the hospital, and they probably would have just sent me home again, anyway. I’ve been hit on the head, fallen down stairs, fallen out of a tree, been hit from behind in several different cars, and I’ve had my bell rung more than once while playing contact sports, over the past 36 years. If anyone should be marginally functional and struggling in vain with basic stuff, it would be me.

But I’m not.  I do struggle terribly at times, and I do have some pretty problematic issues, but I usually manage to figure a way out of my predicament… eventually. I’m not destitute, and all my friends and family haven’t fled from me. I am not homeless, I am not out of work, I am not that terribly marginal — except to the degree I pull myself out of the mainstream frenzy to keep my balance and sanity. Best of all, I am not in jail (granted, I dodged the bullet of arrest a bunch of times, but hey – at least I dodged it, right?) Given just slightly different reactions and choices in many of my life experiences, I could easily have ended up in an institution of one kind or another. My own parents tried to get me committed due to my “inexplicable” behavior, about 20 years ago. It didn’t work, I’m happy to report.

Maybe I’m just too stubborn and too averse to acting/living/thinking like someone who’s brain-damaged. Maybe I’m too proud to give in. Maybe I like having a regular life too danged much to let go. Whatever the reason, I’ve been self-reliant and headstrong and stubborn from the start, and I credit my tenacity and determination to just keep going, regardless of whatever the heck life throws at me, with keeping me in the game.

Now, I wouldn’t recommend following my tumultous loner’s path to anyone — tho’ a lot of us are in this “boat”. It’s lonely and confusing and confounding and can drive you half mad. It can also really piss off everyone around you and cost you jobs and friends and family, and you have to work twice as hard after the fact to fix things up again. But at the same time, a lonely, isolated path forces you to develop a self-sufficiency and skills that you might not have to, if someone else were standing by your side, walking you through everything, checking in with you regularly, and keeping you on track.

It’s kind of like that “restraint” training that some stroke survivors do — to train the hand/arm/fingers on their impaired side to function again, they tie down the arm on their able side, so they’re forced to use the impaired side. And they can progress at rates quicker than those who don’t use this technique. I’m not sure if I even have a lot of “un-hurt” parts of myself to tie down. I’ve been pretty roughed up, over the years. But I’ve forced the broken parts of me to keep going, regardless, and it’s paid off.

That being said, what I think helps me the most as a long-term multiple mild tbi survivor who is not just surviving, but thriving, is:

• keeping my spirits up,
• staying intensely interested in all of life around me,
• staying positive and solutions-oriented, and
• having plenty of access to quality information — both from the internet and neuropsychologists who are available to me.

I wish to high heaven there were head-injury-aware neurologists who were freely available to chat with the tbi survivor population — maybe I’ll check with my local BIA chapter to see if they know of any — because I’d love to be able to ask them a bunch of questions about brain function (particularly mine) without needing to clear it with my insurance company. I need information. I thrive on it. Even if I don’t understand every little bit of it, and there are pieces that get lost along the way, still… it gives me a general orientation in how to live my life. And that helps. I need information to save my life. Literally.

That’s what it really boils down to, I guess — not so much about saving my brain, as saving my life. Sure, of course, I want to save my brain, but there is much more to me than what’s between my ears. There’s what’s in my heart — and in my gut. There’s what is in my spirit, as well as the sum total of my past experiences and all the invaluable lessons that have come from that. My brain may have issues that need to be dealt with, but ultimately, there’s a whole lot more to me than just gray and white matter segmented into various lobes and cortexes (or is it “cortices?”). There’s a whole person in here, with a lot more going on than the electrical impulses and connections between synapses and neurons and dendrites and whatever else is up there (that they know about or haven’t discovered yet, which I suspect is a lot).

And I think that’s also what gets lost, a lot of times, when people deal with TBI. They are so focused on the brain, on the individual functions of the brain that need to be restored or changed or compensated for, or whatever, that they can lose sight of the rest of themselves that is so very vital in dealing with their new brain, their new personality, their new self. The old brain is gone. The old self is gone. It’s not coming back. It can be a terrible loss, and it does need to be recognized and grieved. But at some point, you’ve got to let go of the idea that things can be the way they were before. They can’t. You may be able to get back to a semblance of your former functioning, but the old ways of doing things are gone-baby-gone. It’s a tragedy. There’s no two ways around it.

But that’s not the end of the story. The good news is that for every old way that’s gone, there are lots of new ones waiting to be discovered and developed. The brain is an awfully big place (its size notwithstanding) with a wide, wide world of possibilities. The human spirit is enormous, with more capabilities than we can ever imagine. The body is also capable of incredible changes and adaptations that can compensate for plenty of problems. I’m not trying to make light of tragedy and loss, or make it out to be less serious than it is. It is serious stuff. And it is a terrible, terrible thing when it happens. But there is a whole lot more to us, than we can ever imagine.

And until we put our minds to it, we can never begin to find out just how much is in there.

So, while I do often wonder if brains can be saved, I’m ultimately much more interested in how lives can be saved. It’s not always about what’s in our heads that counts in life — it’s what’s in our hearts.