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.

PTSD/TBI Factor #7 – Societal Context

What the larger group thinks, does matter

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities.

The next factor in the development of PTSD, according to Belleruth Naparstek, is societal context — what the culture you belong to believes — and communicates to the survivor — about the source of your trauma. “The meaning and significance assigned to a  traumatic event by the larger culture makes a difference in its impact.” (Invisible Heroes, p. 52)

In an example she cites, Finnish veterans of WWII showed extremely low incidences of PTSD — the war was seen as important, the fighting spirit of the veterans was celebrated, and overall there was a relatively high sense of subjective well-being, despite disabling health issues. The sacrifices of the soldiers were celebrated by the society — in sharp contrast to American veterans of the Korean War and the Viet Nam War, whose PTSD rates were as high as 30%.

Now, when it comes to TBI, so little is actually known about it in the general populace, and there are so many misconceptions about what causes it, what it means, and where it can lead, that it’s pretty difficult sometimes to ascribe any meaning to it at all. On top of that, when you get into labeling TBI’s as “mild” or “moderate” or “slight” you not only skew the facts of the situation (every brain injury is a serious matter, not to be taken lightly) but you also diminish the significance of it.

And when the injury happens as part of a freak accident, like something falling on your head, or you falling down a flight of stairs… that makes it even worse.

So, all the upheaval you’re experiencing, all the ups and downs, the confusion, the cognitive processing issues, the light and noise sensitivities… well, it doesn’t mean all that much, really. And society doesn’t have much use for you, when you’re unable (they think unwilling) to “get your act together”. As Belleruth Naparstek puts it, “… the significance that the larger community attaches to the traumatic catalyst has the power to cushion or exacerbate PTSD symptoms.” And all too often, no significance is (or ever can be) attached to the injury, leaving TBI survivors open to post-traumatic stress, which gradually builds over time.

PTSD/TBI Factor #6 – Perpetrating Violence

Here it comes… everybody feels its wrath

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities.

So far, we’ve looked at how TBI directly contributes to PTSD through proximity, duration, extent of brutality, betrayal, and threat of dying. In all cases, the big way TBI contributes to these factors is through the skewed perception it can create, causing us to perceive “threat” where there is none, as well as amplifying our emotional and physiological reactions to events. There’s nothing like a hyper-activated amygdala pushing the brain’s automatic fight-flight response, to make everyone’s day that much more “interesting”.

And now we come to an area that has particularly strong implications for TBI survivors — perpetrating violence. As Belleruth Naparstek points out in Invisible Heroes (p. 51), we don’t normally think of folks who perpetrate violence as the ones affected by post-traumatic stress. It’s the victims after all, who bear the brunt of it. Right?

Not so fast. Post-traumatic stress which manifests in “more violent outbursts and greater severity of intrusive symptoms, as well as a greater sense of alarm, alienation, survivor guilt, and a sense of disintegration” is prevalent among those who cause harm to others. It’s a subject I’ve written about before in Putting my soul back together, one act at a time, in September of last year, and it remains a serious concern of mine.

See, TBI is all too often accompanied by anger issues. Outbursts. Meltdowns. And violence. I myself have been plagued by violent temper outbursts and extreme mood swings that shook me like a terrier shakes a rat… and I couldn’t do a thing about them. For someone who has long been known as an even-keeled sort of person who can be relied on to stay calm in stressful situations, it was a terrible blow to me to watch myself (like a train wreck) blowing up at people over what I logically knew was a small thing, but which seemed like the end of the world to my frayed wiring.

It was so distressing and so shocking to me, that I rarely brought it up with my neuropsych, and then I played it down because I couldn’t stand having someone know about what was going on inside of me. It was almost too much to take. My sense of honor, my sense of dignity, my sense of propriety, and my feelings for those I loved and cared about and worked with went right out the window without me having any understanding or control over things… and then I had to deal with the aftermath.

And the more I blew up, the more things I threw, the more I melted down, the more intrusive the memories of those times became, and the more I felt like I was in the grip of it all.

It’s no friggin’ fun watching yourself dissolve before your very eyes, and that’s exactly how it felt. Which added a sense of impending destruction/death to the whole experience.

The crazy eff’ed-up thing about TBI is that it can turn even the most mild-mannered individual into a raving lunatic, and it can cause them to do things they would never, ever choose to do on their own. It can turn even the most mellow individual into a violent perpetrator. I’m not trying to scare anyone, but at the same time, this is the dark side of TBI that people don’t like to talk about. And the toll it takes is something that really needs to be looked at.

Now, I don’t want to say that everyone who does violence to others is not in control of their behavior. Some people very much are. But with TBI, the right combination of fatigue, malaise, agitation, restlessness, and anxiety-producing sense of lost control, that nastly little switch can get flipped and you can find yourself becoming a stark raving lunatic over the stupidest little sh*t.

This is not to say that it has to — or should — stay that way. If we can see (or are informed) that our behavior is unacceptable, it’s our responsibility to fix it and make sure it doesn’t happen again. But all too often — especially at the start of your recovery — a lot of incidents can happen that result in feelings or experiences of violence.

And that takes a toll.

It takes a toll because you see and hear yourself doing these things, and it takes a toll because you may not be able to do anything about it, until you gain understanding and self-awareness, which can take months, if not years.

In the meantime, you’re racking up some serious mileage in the PTSD department. And ultimately that’s got to be dealt with constructively, or it can — and will — drag you down in the long run.

PTSD/TBI Factor #4 – Betrayal

Right through the heart – courtesy of the brain

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities.

Betrayal is a big one that comes into play in PTSD — it impacts your sense of safety and that compounds your difficulties. When hurt or injury or assault or some other trauma is experienced at the hands of others, it ups the traumatic nature of the experience even more. Children who see their parent killed — often by another family member — have a 100% rate of PTSD.

The place where TBI is a contributing factor, I believe, is the place where the thinking processes of an injured brain become paranoid, suspicious, and turn even the most innocuous statement or action into a personal affront. Life can be challenging enough, as it is, but when you throw in the injured brain’s tendency to misinterpret all sorts of otherwise harmless experiences and actions as BAD, and you throw in some perseveration on top of it — spinning and spinning and turning and churning, whipping you up into a frenzy of outrage and hurt — then things get even more interesting.

The thing about betrayal, is that sometimes it’s not exactly that. Sometimes we think that we’ve been betrayed or wronged or personally attacked, when it’s just shit happening. When I got hurt in 2004, I felt intensely betrayed by a number of different experiences, and it only made things worse. I didn’t feel safe. I didn’t feel like I could trust anyone. I had very little control over my thought processes, and I didn’t realize it well enough to actually do something about it.

So I suffered. How I suffered.

The other factor with TBI and betrayal and PTSD is that (as I alluded above), you can feel everything so intensely, that a minor infraction becomes a source of immense pain and suffering. One little misspoken word can turn into a world-toppling drama, and inside the confines of your head it then amplifies until it’s deafening, and it’s all you can hear. Even the most minor of oversights can rapidly turn into a full-blown “betrayal catastrophe” with your world shifting off its axis over stuff that most people wouldn’t even notice.

But you notice. Oh yes, you notice.

 

PTSD/TBI Factor #3 – Extent of brutality

Brutality comes in all shapes and sizes

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities.

Ah, here’s an interesting one… that is particularly strongly colored by TBI — Extent of Brutality — as in, how personal was it? Was it brutal? Was it intentional? Belleruth Naparstek tells us

“Atrocities and interpersonal violence have a more devastating effect on the human spirit and psyche than, say, a natural disaster, even though both can be equally terrifying, life threatening, and consequential in terms of actual injury or material damage suffered. When people are subjected to malevolence and brutality at the hands of their fellow human beings, the ravaging symptoms of PTSD go wider and deeper.” (from Invisible Heroes, p. 50)

And this is where TBI is especially troublesome. Because the pain inflicted by others can be real, or it can be imagined, but either way it hits hard and it strikes deep. In fact, it hits harder and strikes deeper than anyone would reasonably expect it to. With emotional lability, the volatile hair-trigger stuff going on, and a ton of other amped-up nervous system reactions, everything can take on a sense of personal attack. When you’re addled by TBI and your sympathetic fight-flight system is in overdrive, it’s easy to perceive every less-than-perfect interaction as some kind of attack or a personal slight or injury. ‘Cause your rewired brain has got its wires crossed and it tends to take things the wrong way.

On top of that, “regular” people are generally not very kind to people with TBI. There’s something about us that seems to prompt their laughter, even scorn… and who in the TBI ranks hasn’t been on the receiving end of ridicule or accusation because someone thought we were either lazy or faking or not trying hard enough… or just plain stupid?

It’s a nasty little mix, that — the real difficulties along with the perceived danger along with the hyper-activated fight-flight impulse that has all those stress hormones marinating your body, mind and soul, day and night… which in turn impedes your ability to think straight about much of anything important.

People don’t even need to BE brutal towards us, for us to sense a certain brutality to the interactions. Having a botched conversation with someone and having your system go haywire with all sorts of doomsday messages and klaxon alarms has a way of giving even the most harmless of misunderstandings a sharp, jagged edge that tears the living crap out of our sense of who we are and what we’re capable of in life. The brutality seems to be at the hands of others, but it’s really at the hands of our rearranged nervous systems and our rewired brains… which is about the most intimate kind of insult you can live through, day after day.

Indeed, if we are our best friends or our worst enemies, with TBI, things tend to get skewed to the latter. And god help you if you try to fight back. There’s no fighting a battered brain — because it beats back, even harder than before.

So there it is. Brutality can come in all shapes and sizes. And when it comes from within, man is it a bitch.

PTSD/TBI Factor #2 – Duration of the trauma

Like a storm hit your brain – hard

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities.

The next factor in the development of PTSD, according to Belleruth Naparstek, is “a longer duration of exposure to the trauma, or a greater number of exposures within a certain period of time — in other words, the “dose” experienced.” (Invisible Heroes, p. 49) Victims of domestic abuse that lasts for years and years, those exposed to war, and also helpers and first responders, are particularly susceptible.

As I discussed in my last post PTSD from TBI — Like being trapped in an abusive household, TBI can – and often does – result in repetitive “micro-traumatic” experiences which all add up over time to clog the system with biochemical stress sludge. What’s more, in the initial period after the injury — and even weeks, months, and years after the TBI — you’re pretty much bombarded by a constant stream of “micro-traumatic” experiences, which all adds up to a hefty dose of post-traumatic stress.

There really is no way around it. Your brain is functioning differently from how it used to — and as far as you’re concerned (and everyone else), it’s functioning wrong. Everything is starting to slide, nothing seems familiar anymore, and there doesn’t seem to be anything you can do about it.  Chances are, your wits aren’t about you, so you’re not 100% aware of how different you are from how you used to be — your behavior and your thinking are all sort of jumbled up, so nothing is really clear. But still, you’ve got this mounting sense that something is not right, and you can’t figure out what it is, or what to do about it.

Depending on your reaction, and depending how you interpret your experiences, you can be primed for some real PTSD in the weeks and months following a TBI. If you’re determined to do and be and work and live and play exactly like you were before your injury, you’re in for a lot of rude awakenings. And if nobody is around to explain to you how the brain is affected by TBI, it can be frightening – terrifying, even.

So, yeah, it’s a big dose of trauma. Over an extended period of time. And if your family and friends and surroundings aren’t understanding or helpful, it can prolong the pain and also exacerbate it. Ignorance and fear rarely help anything. And when pushing you to “just be normal again” is the chief strategy, it can open the door to even more traumatic experiences over time.

Adjustment on some level is necessary, but when you’re under intense pressure to be something you’re no longer inclined to be, it adds even more stress — and more trauma. And the longer you put off making necessary adjustments, the longer you prolong your suffering, and impact your mental health.

It’s hard to describe this whole process to someone who’s never experienced TBI or some other condition that puts them at odds with how they “should” be, but if you’ve been there, I’ll bet you know what I’m talking about.

PTSD from TBI — Like being trapped in an abusive household

Yeah, I used to live there

I’ve been giving a lot of thought to my discussions about how TBI can introduce chronic trauma to the lives of those who experience it, and I was searching the web looking for some ideas about how to explain or describe it.

I happened upon a site that’s devoted to the recovery of women who were essentially held captive by a spiritual abuser, and who were physically and psychologically abused and controlled for years.

Hearing the descriptions of the process of their gradual traumatization that led to raging cases of PTSD, it reminded me a bit of what it can be like living in a body that’s being run by an injured brain.

Now, I’m not going to even hint that experiences post-TBI equate with those of being kept under lock and key by a viciously controlling “spiritual leader” who beats his charges bloody each night for no apparent reason. There’s really no comparison. However, on a much smaller scale, the mechanisms are the same, eventually leading from traumatic brain injury to post-traumatic stress.

With TBI (especially early on), there can a really pronounced sense of lack of control over circumstances which lead to harm, injury, and real/perceived threat. Your brain is not firing on all pistons, and it’s mis-reading cues left and right. On top of it, TBI has a way of super-activating the amygdala, the part of the brain that sends those WARNING! messages to the rest of the brain, so not only are you mis-reading cues and doing/saying things that A) don’t match what you want to be doing, B) don’t match what others expect you to be doing, and C) don’t make much sense to anyone, actually, but you’re also experiencing an exaggerated response to the series of unfortunate events that befall you.

You’re in danger. You’re taking “hits” throughout the course of each day as you stumble through activities that used to be easy for you. The harder you try, the worse you fare, and the resulting biochemical onslaught of try-try-again — and againand again … all to no avail… builds on each last botched attempt, like so many blows from an angry guardian. It might not be the case that someone is physically abusing you, but the experience of one failure after another, in one activity after another, with things falling apart more and more with each day, and no clear view of how to deal with and fix it all… well, that’s the sort of beating you take. And it’s not easy.

It adds up, too. Mentally and physically — but mostly physically. Here’s an excerpt from the web page I found (Under Much Grace) which talks about PTSD after spiritual abuse:

Review of the Survival Response
When confronted with a traumatic or threatening situation, as discussed at length in a recent post, the brain of a person responds by activating a survival response which is profoundly physical in nature. If a person stopped to think about and plan a response to the threat, chances are that they would not be able to respond quickly enough to survive the threat. The brain’s analytical or critical thinking faculties suspend momentarily, and lower brain structures kick in, enhancing the speed of physical response.
BB Note: In TBI, with a hyper-activated amygdala and flawed processing to boot, it’s really, really easy to think that you’re being confronted with a traumatic or threatening situation. Logic and reason have nothing to do with it, when you’re stuck in the echo-chamber of your injured brain. Unless you have someone to turn to as a sounding board, anything and everything can seem like a threat — which means that your brain spends an awful lot of time activating physiological survival responses.
Before advances in science allowed better observation regarding the brain’s response to threat, science took note of the “fight or flight” response. When faced with a serious threat, the body started into a cascade of hormones and neurotransmitters which enable the body to flee or to fight. The autonomic nervous system (the automatic system that governs unconscious physical response) shunts blood away from the gut and to skeletal muscle and brain, as the body releases hormones that raise blood pressure, heart rate, and blood sugar as they also speed the response of nervous tissue. It makes energy and oxygen available to the systems of the body that play the greatest role in either running from or resisting a threat.
BB Note: I’ve talked about this before on this blog, and this is a great summary, too!
Please take note: The mind processes psychological threat or perceived threat in the same way that it does a physical one, and the same cascade of neurotransmitters and hormones plays out, even if an individual is not in a situation where they would need to physically run or fight. The mind and body processes these threats in the same manner. Also note that these are not chosen responses but are deeply physiologic, and they actually bypass critical thinking or choice.
BB Note: All threats really are equal, when it comes to fight-flight responses. The chemistry kicks off and takes over, and even if you ARE able to give some thought to what’s happening, still, your body is working around your thinking brain, so it doesn’t even get a chance to weigh in.
Chronic Stress
Those who cope with chronic experiences of trauma are often faced with these types of responses on a regular basis. The body cannot maintain this high level of energy and stress for long periods of time, and over time, the body learns to adapt because the pressure and stress becomes to great. . . .  And as previously discussed, some of these responses that result in a psychological change result from a physiologic cause.

. . .

Consider also what takes place in the brain and body when it must operate under constant high stress. The body resets itself and changes the way that it responds to certain hormones and neurotransmitters. Think of an unfamiliar noise that you hear in an new environment that is a part of it. If you grew up in the country away from traffic and then moved to a city where you could hear the sound of the traffic in your bedroom at night, for some time after relocating, that sound acts as a disturbance – until your brain learns to adapt.
A similar adaptation takes place in the body’s production of neurotransmitters/ hormones, its responses to those chemicals and how it responds to impulses related to stress. (An adaptation of the body we associate with high stress that is affected by these hormonal changes can be hypertension.) When under constant high levels of stress, the body readjusts its baseline to maintain function, but that function has been altered and is not ideal. The brain no longer responds to stress in the normal way. Some neurochemical production drops, some increases, and the degree of physical response can change also. There is so much cortisol all the time, it essentially becomes meaningless to the normal systems, so the body adapts to maintain the ability to respond immediately to serious threat, preserving that survival response as much as possible. But consider that chronic stress alters that system and how well it responds.
BB Note: Indeed. The more you’re steeped in the experience, the more it affects you and shapes you. Over time, with enough traumatic experiences that have you jammed in high gear, your whole system can turn out to be so wired, that easing up is not an option. But then we get into the problems of not sleeping enough, eating the wrong foods, being jacked up all the time on something or other… it’s just not good.
Previous Threat and Learned Helplessness
We have also already discussed that PTSD more frequently develops when a person’s efforts to protect themselves becomes thwarted in some way. The intricate and marvelous system which involves generating a great deal of emotional energy as well as physical energy on a purely physical level sometimes fails to result in a beneficial outcome. That energy must go somewhere, and releasing that kind of energy is sometimes referred to as “blowing off steam.” When the release of energy doesn’t result in protection in response to a trauma, if the affected person cannot find a safe way and an outlet for expressing that raw, hormonally driven energy, they can tend to turn it inward through negative emotion that they direct toward their sense of self. It contributes to the sense of pessimism that accompanies PTSD. When chronic, a person learns helpless behavior and believes that they are helpless, whether or not they are truly helpless. Perception becomes everything.

Learned helplessness, indeed. When you’re struggling with a brain injury and you can’t figure out what’s going on, and you can’t seem to protect yourself from, well, yourself… all that energy does indeed turn in and you can end up being incredibly rough on yourself over any and every little thing.

And with TBI, since perception is notoriously skewed, sometimes you can never really know if you’re right or wrong about things, which is even more cause for uncertainty and doubt. After weeks and months and years of things getting screwed up for some weird-ass reason, you’ve had to take hit after hit after hit on a biochemical level, that can really cut into your sense of self, ability to believe anything positive about yourself, and worst of all your cognitive ability — as though you could afford to lose any more than you already lost.  Physiologically, it takes a toll.

The bitch of it is, that’s the house you live in. The brain in the body you inhabit has gone haywire and it’s sending all the wrong signals AND unleashing the hounds of hell inside your head and your spirit, day after day. Forget about having a bad attitude about yourself – the physiological experience of trying to understand and fix up one botched activity after another is stress enough — it’s brutal. It doesn’t even need to have a mental/psychological basis. It’s the simple fact of how our bodies work in response to perceived threat and the overtime activity of always playing catch-up, that does the job on us. We don’t even need to give it any thought — just the regularly occurring, chronic need for more work, more attention, more compensation does a job on us.

It’s like living in a household with a vicious abusers. But the abuser cannot be escaped. Because they live inside your head. They are your head.

On the brighter side, there is a way out of that mess. It takes time and discipline and continuous work, but I can tell you from personal experience — yes, there is a way out of that abusive house. Stay tuned…

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.