Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.
Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me. Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.
Because there are plenty of them out there.
So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.
And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.
I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.
So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.
As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.
So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.
And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.
Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.
So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.
Step #2 in finding a new neuropsychologist is : Be clear about what I want to achieve from working with someone. I need to make up a short-list of my issues — a condensed version which will communicate to the neuropsych the nature and extent of my issues.
The last time I was looking for help for my persistent TBI/concussion issues, back in 2008, I did a lot of things in ways that kept me from getting help. One of those things was bombarding potential docs with a whole binder full of information about my history, my present, and more. It was seriously a sheaf of papers I had to hold together with a binder clip. And when I showed up to talk to neuros about my symptoms, they just looked at me like I was insane.
Because I sort of was. TBI had so scrambled my brain, had so confused my ability to think clearly about, well, anything, and it had really decimated my ability to see the forest rather than all the trees. It also exaggerated just about any perception I had, distorting it like a funhouse mirror. So, of course I looked and sounded a little crazy. Of course I did.
And accordingly, I was dismissed and treated like a malingering drug-seeker — and I didn’t get any help at all.
So, I had to take care of it, myself.
This time, I don’t want to repeat that, so while I am collecting details on my current situation, I’m thinking about how that actually affects my functioning, what impact it has to myself and my environment, and how I want it to be. Cliff notes. Boil it down. Now I canactually boil things down to their most basic essence, so I’m going to do that.
This morning, I am extremely dizzy & lightheaded, feel like I’m going to fall over, my head feels like it’s in a slowly tightening vice, and I’m pretty foggy today. I’m having a heck of a time getting started. It’s holding me back, because I need to be up and at ’em, not puttering around the house, fiddling with this and that. I know better. I’m just having trouble doing better, and I’d like to fix that.
I really need to be “on”, these days, because my year-end self-assessment and performance reviews are happening now. Unlike days of yore, when your boss rated you, nowadays we have to do assessments on our activities and report on what we’ve done. This is one of those times when I can’t fake my way through — I need to be clear and concise, and I need to represent myself well. If I’m foggy and can’t get started (I’ve had real problems with initiation for a couple months, now), I can’t do my level best on my self-assessments or my future goals. I’ve struggled with just getting myself to figure out the self-report form, and I’ve messed up a couple times, putting comments in the wrong fields (of course, it would be nice if the app let me move things around, but no).
And these difficulties directly impact my ability to earn a good living, advance in my career, and be the best that I can be.
So, in order to get help with this, I need to be able to succinctly state the issues I’m having, how they are affecting me, and state clearly what I want to have happen instead. I need to give enough information that it makes sense to someone, but not so much that they glaze over.
I also need to use these notes to practice talking to someone about my issues, so I can communicate clearly and have all the right information to give them. I’ll use my notes as talking points — and possibly make up a separate bullet point list for myself — no, it will be more helpful if I am referring to a copy of what I give to the other person.
Armed with this tool, I hope to find someone to help me “hack” these problems. That would be great.
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.
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.
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.
Obviously, the threat of dying is going to stress your system. But even more significant than the actual threat, is the perceptionof the threat. Belleruth Naparstek makes this point in Invisible Heroes (pp. 50-51), in particular about heart attack survivors. What makes people more likely to develop post-traumatic stress after their heart attack is not how bad it was, but how bad they perceived it to be.
This is particularly important for TBI survivors, especially mTBI (including concussion) survivors, who may have their thinking turned around — and on top of it have a hyper-active fight-flight response. Like I discussed in the last post about betrayal, you can jump to conclusions pretty quickly about situations, and your thinking can be completely wrong. But you have no idea, because your brain has been rearranged a bit.
And that just makes things worse. Because underneath it all you can have this nagging feeling that you’re missing something, and that just adds to the sense of stress and pressure. On some level, even the most minor threats can seem life-threatening. And you can become completely convinced you are in extreme danger, because you’re getting cues and clues that tell your body and your brain that you are going to die.
I believe this happens on a neurological level (or as some would say – “neuroceptively” – or the level at which your nervous system perceives things and interprets the data it gets). I also believe this amplified “death threat” interpretation happens as a result of our body-brain feedback loop, which is compromised in TBI, both in terms of our brains being less able to decipher information, and our bodies being hyper-tweaked and on hyper-alert and over-reacting to just about everything that comes along. Over thousands upon thousands of years, the human brain has learned how to interpret signals from the body that tell it that the environment is not safe, and then our brains (not our minds) kick into action and send out signals to respond. The more extreme the signals (and with a haywire autonomic nervous system, that’s what you can get), the more extreme the response we muster. And with our brains already being on alert from having to work harder to just do normal things, we’re already primed to overdo it on the reaction front. And when our over-zealous reactions send out waves in the world around us, the people we look to for support and feedback can retreat, leaving us alone to work things through — and that adds more stress, which in turn sends danger signals to our bodies and brains, which interpret them as threats to our lives.
And indeed they may be.
So we end up in a cycle of escalating worry and isolation, and all the while there’s this ever-present threat of extreme isolation — which can feel like the equivalent of death.
I really believe that this phenomenon is particularly true of mild traumatic brain injury or concussion, which “doesn’t look that bad” to most folks, and which all too often results in isolation and increasing dysfunction over the years. Having a “mild” head injury kind of disqualifies you for any sort of compassion or accommodation. After all, you should be able to get back to normal, right? You just hit your head… you didn’t crack it open or end up in a coma or anything like that. So, what’s the problem?
The problem is, some of our most fundamental characteristics (and coping mechanisms) have changed, and we can no longer rely on them. In some ways, part of us dies — or morphs into someone or something we don’t recognize or fully understand. And we lose a sense of ourselves and our connection with life as we once knew it — which on a fundamental, basic level, is the equivalent of a death threat.
Mild TBI is anything but mild, if you feel like parts of yourself have died or are dying off, and there’s not a damned thing you can do about it. Especially if you don’t realize what’s happening.
It’s this behind-the-scenes, unarticulated, unexpected, all-but-invisible quality of the life-threat that makes it so pernicious. Our bodies and our brains are getting all these signals about being in danger, and we become increasingly paranoid and antsy and, well, driven to survive.
Meanwhile, the stress is building up with nowhere to go, because half the time we don’t even realize it’s there. Or we depend on it for our energy source.
Ironic, isn’t it, that we use a life threat as a lifeline? I know I do… and I’m sure I’m not the only one.
Bottom line is, with TBI, especially mild TBI, the important thing isn’t whether or not you’re really in danger, but whether you (your body and your mind) think you are.
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.
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.
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.
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 again — and 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.
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.
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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…
Step #2 in 
Broken Brain - Brilliant Mind 