An interesting thing happened yesterday. I was going through some old posts that I had un-published for some reason, and I decided to re-post them. One was from 2009, where I was debating whether to fire the therapist I was seeing. That was almost exactly six years ago, today, and long story short, I did fire them. After I figured everything out.
With me, a lot of the stuff people say doesn’t sink in right away, so I have to take some time to figure it out. I have to ask questions — and I have to ask them the right way, so I don’t sound like an idiot. Truly, there are things that block me, that keep me from understanding what’s going on, and unless I can ask questions, I get lost.
That’s probably the issue with emails, lately. I don’t talk to real people enough, and I don’t get what they’re saying in writing. How ironic, that I need to talk to people. Writing has been my preferred mode, for as long as I can remember. But the practice at having discussions with people has really paid off — and I’m a heckuvalot more functional at getting information and processing it now, than I was, at the time I wrote that post about my therapist.
I guess everybody’s like that, to some extent — we need to bounce ideas off others, get their opinions, see what they have to say, before we make up our minds about things. It’s not a TBI thing. It’s a human thing. For some reason, my brain tells me that I’m stupid and dull and not getting things. Then again, it’s not just my brain — it’s most people I’ve ever talked to about things I didn’t get, throughout the course of my childhood and youth. People just couldn’t fathom why I was so dense about some things, why I would miss details, why I would struggle with decisions that seemed so straightforward to them. And even when people helped me without questioning me, I had a hell of a time understanding their facial and vocal expressions, and interpreting how they really felt about me. It was safer to assume the worst, because I’d assumed the best about people so many times, and I’d been wrong.
If people tell you you’re an idiot (in so many words) — or you think they believe you’re an idiot — even if you logically know you’re not stupid, it starts to take a toll.
And you shut down. Which is what I did. I just couldn’t take all the frustration of trying to talk to people, trying to express myself, trying to make myself clear.
Truth be told, I still feel that way. I am definitely making progress with extracting needed information from others, but I’m still not great at communicating in words. There’s too much going on, that can’t be translated verbally — it’s a whole world of sensation going on in my experience, that doesn’t lend itself to words.
And I’m sick of trying — and failing — to get my meanings across.
So, I’ll look to my writing to help me put things in order. It helps with my thought process, and it’s a huge help for my head. I feel much less alone, when I’m writing things down. Talking… that’s a very different thing.
Which is ironic, because I need to start looking around for another neuropsychologist. I know my current one is not leaving till March/April, but it takes time to find a replacement, and I need the time buffer to pick carefully. I’ve been ’round the barn with a handful of different therapists, all of whom eventually annoyed the living sh*t out of me — including the last one, who (I now realize) is just an a**hole with a license to do social work.
Caveat: I’m going to rant a little bit here about the last official therapist I had — cover your ears /scroll ahead if you don’t want to hear it…
Okay, so I was seeing this therapist, in addition to my neuropsych, to handle caregiver concerns about my spouse. The whole point was for me to get support so I can be a better caregiver, and also take care of myself. And that was my expressed intention, going it. But oh no… the therapist couldn’t just work with me on that — they had to spin my marriage into some sort of competition between my spouse’s needs and my needs, and they were actually gleeful, when they asked if my spouse noticed my behavior had changed to be less helpful, less sympathetic, since I started seeing this new therapist. The therapist was constantly talking about how my needs were their concern, vs. my spouse’s — as though the two of us were competing parties vying to get our needs met from limited resources, and both of us couldn’t be served at the same time. They treated my marriage like a zero-sum game, where only one person could win, and my spouse was just taking advantage of me. They COMPLETELY disregarded the fact of my spouse’s neurological issues — the strokes, the diabetes, the panic/anxiety issues — and they treated them like they were a manipulative sociopath. When I told them about how my spouse would get upset over things, that therapist actually smiled and was pleased. Fuck Them. Fuck them and their self-centered, divisive bullshit. You go up against my marriage, and you go up against me. So, fuck you very much, you miserable, hard-hearted, shriveled-soul idiot.
Okay, enough. Obviously, I’m none too pleased with that therapist, and I’ve had a number of other experiences that have been similar. Everybody seems to take an over-simplified approach, where my spouse is either more disabled than they are (and getting worse, because after all, they are getting on in years and they do have their own set of issues), or they are not disabled, they’re just a manipulative narcissistic sociopath.
Granted, a lot of my spouse’s behavior could qualify as the latter, but they have neurological issues. And they’re not like that ALL the time. I need help managing myself and my relationship with them, and I need someone to understand that I actually do have some issues that I need to address.
And the approach that my current neuropsych takes — I have some issues, but I really blow them out of proportion because my thinking process is screwed up — that’s getting old.
Well, this post is turning into a longer one than I planned. It’s time to take a break. Give myself a breather. And chill out. I need to stay positive and pro-active, not get sucked into negativity from external circumstances. I’ve been sick. My resistance is down — and that includes my mental resistance to negativity. Best thing I can do, is look to the good lessons I’ve learned and focus on them.
Bad stuff happens all the time. But good stuff does, too.
And that’s where I need to put my attention. Hopefully, I’ll find someone to work with who feels the same way.
In the land of mindfulness-oriented behavioral health providers, how is it that the concept of Beginner’s Mind gets lost?
I’m specifically talking about my own experience with behavioral health folks, including friends who are psychotherapists, counselors I’ve seen, as well as my neuropsychologist. In all my years of seeking out help for my issues, I have but rarely encountered individuals who were really able to suspend judgment and not get stuck in the trap of continually seeking out ways to reconfirm their own world views.
And how many times have I sat across from someone who was professionally trained to help me, watching them not listen to me for what I was saying, rather for confirmation of what they believed…?
I think it’s wonderful that there are professional tracks for people to go down, to learn how to help others. At the same time, though, people also need to not get stuck in thinking they have it all figured out.
Because the behavioral health landscape is changing dramatically, especially compared to where it was just 10 years ago. We know so much more about the brain and its mechanisms than ever before. Yet we have just only begun to scratch the surface. So, let’s not get all hoity-toity about how much we know and how clued-in we are, thanks to our specialized skills and whatnot.
To me, orthodoxy (being convinced that you’ve got THE SECRET to how things work) and rigidity (never, ever changing your world view) are even worse liabilities than a brain injury. They make it extremely hard to adapt — which is precisely what we need to do as TBI / concussion survivors. We may be changing and growing and whatnot, while our providers are still stuck in their own versions of reality — which may or may not be useful to us.
It really is a problem. But I’m not the one to run around telling people that they’re too stuck in their ways. They have to see and realize it for themselves, and let go of their pride, arrogance, hubris. I’m sure it can be very, very difficult, dealing with brain-injured folks and their families/loved-ones, not to mention the healthcare system. It can put you into a state of perpetual fight-flight, which makes you even more susceptible to egotistical tendencies, arrogance, and prideful blindness.
I think especially for those folks who have been on the leading edge for many years, who were ridiculed and marginalized and made to feel “less than” because of their forward-looking stance. When you’re continually attacked and thwarted, it can do a number on you. I know how that is, and it’s no fun.
So, that cannot help but affect you. It cannot help but color your world view and make you biochemically and neurologically inclined to behave in ways that are defensive and self-supporting. Especially if you’ve had to shore up your own self-confidence and self-image and professional reputation, lo these many years, that can train you to be a certain way… a way which is intent on finding proof that you’re right, that you were right all along, and “they” were all wrong to doubt and thwart you.
Yes, I get how that shapes and conditions you.
At the same time, the higher purpose (of being of genuine help to others) needs to trump the hunger of your ego.
In the end, isn’t it more fulfilling to continue to learn and grow, rather than being someone whose main purpose is to ease the pain of the daily stresses of life and prove their “rightness” to themself and others?
I’m not a behavioral health provider, but personally I think I’d rather be learning and growing than constantly being on the defensive about my own convictions.
In the end, it can much more interesting to find out you’re wrong… and expand your concept of what’s right. There is so much more to discover about the human systems, the brain, and how they all interact.
Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.
I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.
I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.
The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? 😉 But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.
Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.
Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.
We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.
The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears. But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.
Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.
It took several years to get them back on track, but we did it. And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.
The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.
So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.
They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.
It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.”
And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.
Fear that there is something terribly wrong with them.
Fear that they are damaged beyond repair.
Fear that others will hate and look down on them because of the strokes.
Fear that they will never be “normal” again.
Fear that they’re going to die a horrible death and go to hell forever.
Fear that it is all TOO MUCHto handle.
So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.
There’s the lying.
I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.
I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.
It’s getting really bad. On a number of levels.
First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.
And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.
And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them andtheir spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.
Right. Emotional support. Unfortunately, I know differently.
This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.
Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.
And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.
It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.
But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… andtheir blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!
So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGERbecause they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.
When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.
At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.
But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.
None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.
Just kidding — that’s my attempt at being facetious and draw attention to some of the absolute absurdity that the DSM-IV once again brings our way.
I’ve heard people talk about how DSM diagnostics are decided — apparently there’s a committee of powerful, politically connected psychiatry insiders who all get together in a room behind closed doors (literally) and bargain to see who gets to define which syndrome or disorder. Hmmmm… Sounds dicey to me.
And yet, their pronouncements rule the day. And they hold the keys to the castle with the insurance companies, as well as how we define and understand ourselves, based on “professional opinion”. Their little jockeying-for-position games behind closed doors can — and do — ruin lives. Not least by way of coming up with bogus definitions that clueless therapists and counselors and healthcare providers rely upon to conceptualize conditions and treatments.
My reading of the ONF guidelines for persistent mTBI symptoms has hit a speed bump. My initial enthusiasm has been quickly cooled — as it often is. I guess I had a bit of an impulse control problem, when I started reading their guidelines. I was so excited that someone had put together something comprehensive for healthcare providers, which actually focused on long-term issues of mild traumatic brain injury. Fortunately or not, my double-take happened pretty early on — around page 7, when they started to go on about DSM-IV diagnoses for PCS and PCD.
Apparently, PCS is a syndrome where you just *think* you’ve got a problem. There’s been no neuropsychological testing to prove it (though actually getting access to that testing can be all but impossible, and even when you do get tested, whether or not you get someone good is all too often a coin-toss).
Now PCD, that’s a real problem, being verified by neuropsychological testing and evidence of “significant impairment in social or occupational functioning”. My next question is, who gets to decide what constitutes “significant impairment”? If my post-TBI symptoms persist in making me utterly miserable for years after the fact, but I can still hold down a job and carry on a semblance of a conversation, does that mean I’m not really that bad off? (This really brings to the fore the need for real, solid, in-person education, like the “You Look Great” videos and book by John C Byler. Check them out, if you can — the YouTube videos, especially.)
What’s more, the DSM-IV PCD/PCS definitions talk about loss of consciousness being a requirement for concussion. Please take note, doctors and patients alike:
You Do Not Have To Lose Consciousness To Sustain A Concussion
A temporary disruption of consciousness will do just fine, thank you. Fogginess, dizziness, feeling out of it… that can indicate concussion, also.
Anyway, considering these guidelines from the ONF are intended for doctors who are diagnosing and treating concussion/mildTBI folks, this inclusion of DSM information really worries me. It’s so obviously slanted towards psychology, when traumatic brain injury’s nature is so physiological in nature. The separation between brain and body that the psych mainstream insists on maintaining is a little bit creepy, actually. Here are all these people walking around in bodies, living physical lives, dealing with people who have genuine physiological bases for their state of mind, and yet magically the body doesn’t matter. It’s like the psychiatric diagnosis-definers of the world have problems with their own physical realities, so they expect everyone else to be as divided and dismissive as they are.
How is it possible that a whole scientific field (though Sheldon from Big Bang Theory would probably dispute the scientific-ness of psychology/psychiatry) can discount half (or even more) of the human experience? It’s sad. And pretty awful that so many impaired people have so much power.
In shutting out the physical, they draw much of what they purport into question. Their guidelines and diagnoses patently discount a massive chunk of contributory information. How can you take them seriously, when they make claims that post-concussive issues are “subjective”? As though it’s all in our heads and we’re just looking for attention. And yet, they’re the ones making the rules and deciding whether or not we get care — and what kind we get. So, we have to take them seriously. As a heart attack.
The DSM definition of PCS — which includes “Subjective concentration, memory, or intellectual difficulties without neuropsychological evidence of marked impairment” and “Preoccupation with above symptoms and fear of brain damage with hypochondriacal concern and adoption of sick role” has Münchausen syndrome written all over it, and seems to me to breed dismissal, neglect, and opens the door to a whole course of “treatment” for a psychological condition that doesn’t even exist.
Of course, it wouldn’t be the first time the psychiatric industry were playing fast and loose with other people’s lives, in hopes of getting people “back to normal”. Talk to historians (or check Google) about marginalized populations , like Native Americans, African-Americans, non-compliant women, gay people, and just about anybody who has been considered “abnormal” by mainstream society, and you’ll find generations of evidence of psychiatry being used to further the dominant paradigm, and decide who’s fit to belong and who’s not.
In the past couple of generations, with the rise of pharmaceutical “solutions” to mental health issues, psychiatry has been used tons of times to further the profits of big pharma, and their influence reaches into every aspect of our lives. It would seem at times as though psychiatry and psychology were just the vetting mechanisms to identify which drug should be prescribed — not if any drugs are really necessary at all.
And this is what gets me the most. Because if you’re saying that Post-Concussive Syndrome is a “subjective”, “hypochondriacal” psychological condition, and you reach for the prescription pad, you may very well be headed down the wrong path entirely. TBI makes a lot of people react completely opposite to drugs than the rest of the population, and it can make you intensely sensitive to even minor doses, which not a lot of people realize.
Another thing that worries me about including DSM stuff early in the ONF guidelines is that if docs read that up front, they could be led to think that, “Well, it’s not a REAL problem that I can address — it’s actually something that’s in their head and they’re better off seeing a counselor. Furthermore, if I allow this patient to entertain fantasies about their being sick, I’m just encouraging their malingering and rewarding their Münchausen syndrome. And I don’t want to do that.” And they may ship ’em off to psychiatrists who whip out that prescription pad and send their new charges straight to the fires of aggravated TBI symptoms – probably without even realizing it.
And off we go down the road to hell… With clueless doctors staying that way, and TBI survivors continuing to struggle and fall deeper and deeper into the hole of no-answers, no-options, no-hope.
So, there’s my speed bump meditation for the day on the ONF guidelines. As always, with mild TBI, it’s caveat emptor, when it comes to getting good information. Buyer Beware — someone with either an agenda… or misplaced loyalties/trust… or a need to take shortcuts… or a sense of extreme urgency (or a combination of all of the above) might be playing fast and loose with the facts of the case, for their own gain and profit — not yours.
Which is why we survvrors and those who care about TBI survivors need to keep vigilant and guard ourselves against unmitigated nonesense. Fortunately (for me, anyway), my constant restlessness and TBI-enhanced anxiety and vigilance keeps me on my toes.
I’ve been thinking a lot about pts (post-traumatic stress) lately. Especially in conjunction with traumatic brain injury, which I’ve said a number of times is an ongoing traumatic experience, and not only at the time of the initial injury.
Anyway, I’ve been thinking about the effect my TBIs have had on the people around me, and I can definitely see how my own trauma led to their trauma, too. The jumpiness that people who love and/or care for someone who has experienced TBI, is a common thing — and I think it’s directly related to their own traumatic stress.
‘Cause traumatic stress is, in fact, contagious. (And so I’ve answered my question.)
(PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma. This event may involve the threat of death to oneself or to someone else, or to one’s own or someone else’s physical, sexual, or psychological integrity, overwhelming the individual’s ability to cope.
Think about it… Someone sees someone they love and care for experiencing this traumatic experience, and they themselves are traumatized. And when the person who experiences TBI is a close part of that person’s life, then their injury can in fact represent a threat to their “physical, sexual, or psychological integrity, overwhelming the individual’s ability to cope.”
When you’re in the midst of your post-injury haze, and things are starting to fall apart — whether or not you know why it is or what to possibly do about it — you can say and do things that seriously threaten the people around you. It can threaten them on physical levels — like when your temper becomes violent and unpredictable. It can threaten them sexually — like if you lose all desire to have sex, or you become more sexually assertive. It can threaten them psychologically — like when you’re not acting like the person they know, and your behavior is so bizarre and unpredictable that they start to feel like they’re losing their mind and they doubt their own sanity.
Yes, post-traumatic stress — especially with TBI — is definitely contagious.
And that seems to me to be one of the missed pieces in TBI recovery — addressing the PTS of caretakers and partners of TBI survivors. It doesn’t even need to be moderate or severe TBI. I think mild TBI makes for an even likelier candidate for PTS, because it’s so insidious and can sneak up on you in subtle ways that make you — more than anything — feel like your psychological state is threatened.
Everybody feels like they’re going crazy, and when you don’t understand the underlying causes of it, well then, you’re totally screwed.
Until you get help.
This is where I can see some trauma therapy really helping — for the caregivers and partners and family members of TBI survivors. You get a really good trauma therapist who can work with those “TBI satellite participants”, and you help them sort things out, help them come to terms with their own individual trauma, and you get them on their feet, realizing that they are safe, that they are okay, and that they can deal with everything that comes up.
The more I think about it, the more surprised/dismayed I am that more sensible approaches to TBI and PTS haven’t been developed. There seems to be a sort of territorial overlap between the two, that doesn’t need to exist. Traumatic Brain Injury comes with a full compliment of neurological issues that can be as physiological as psychological. And those issues can — and often do — lead to traumatic stress. That traumatic stress then compromises the cognitive processes of TBI survivors, thus short-circuiting their recovery in the period after the initial injury… which then compromises their long-term prospects for restoration of their quality of life. I really believe the trauma piece is why TBI survivors — especially “mild” traumatic brain injury survivors — have poor long-term outcome prognoses.
There’s the trauma overlap that biochemically shorts out the adaptive nature of the brain, so the brain doesn’t get a chance to adapt in the ways it needs to, in order to effect actual recovery.
And countless people are suffering needlessly, because psychotherapists and neuropsychologists and neurologists are all battling over their respective territories, causing needless pain and suffering as a result.
But if people could put their own individual needs and wants aside and collaborate in a meaningful and respectful and productive way, who knows how many people could be helped?
Who knows? It’s maddening to think about all the suffering that’s taking place, because therapists are saying “You don’t have TBI/brain damage, you’re experiencing trauma,” and neurology folks are saying, “You don’t have trauma, you’ve had a TBI.” The two are inextricably interconnected, but nobody seems to have either the courage or the insight or the will to team up and come up with a common-sense approach that can mitigate both.
TBI leads to disrupted neurological function
Disrupted neurological function leads unanticipated changes in thought and behavior
Unanticipated changes in thought and behavior leads to trauma
Each “arm” of the therapeutic/rehab community could easily find a complimentary place where they could constructively collaborate with each other.
But they’re so accustomed to marking off and defending their territory, that they fail to live up to their full potential. And countless people suffer as a result. AND they decide that it’s “impossible to recover” from TBI. What a terrible, inhumane thing to tell people. That they are irreparably damaged and have no hope of true recovery. Please.
The solution? Well, our “experts” could start talking to each other and start collaborating on a win-win situation for everyone.
Or those of us who have been neglected and abandoned and misguided by the therapy/rehab establishment can take matters into our own hands and address the most fundamental underlying basis for our ongoing issues — constant fight-flight sympathetic activity in our autonomic nervous system, which feeds the traumatic stress dysfunction and short-circuits our ability to recover and rehabilitate.
In a way it might just be possible for TBI survivors to take their recovery into their own hands — especially mild TBI sufferers. And the therapists and neuro people might be put out of a job. Because I suspect that countless people who have been sitting in therapy for years and years actually have underlying neurological issues that no amount of talking will fix — it only makes it worse and perpetuates the therapeutic relationship — and ongoing billing for the therapist and the insurance companies.
If we just got some exercise and learned to balance our nervous systems with slow, steady breathing, and we ate decent food at regular intervals, how much less “therapy” would we need? (There are always those who need to have someone to talk to just to check in regularly, but I’m talking critically about psychotherapists who insist on digging around and raking up all the muck inside you to “release it for healing”. All that stirring up will do a neurologically compromised individual more harm than good, trust me.)
Anyway, it’s a beautiful day and I’ve got a lot on my plate before the weekend is up. If only the weekends were three days instead of two. I feel like I’m just getting started, but I’ve got less than 12 hours till I start working again.
Oh, well. I guess the main thing is that we see where there are opportunities for positive change — stemming from seeing where things are not working as well as they could. If we can piece things together and understand the origins of post-traumatic stress and how it affects the people around us, we might be able to do something about it.
But as long as we keep separate and alienated and territorial, the suffering will continue.
I am writing this after several conversations and some reading — one conversation with a former soldier who was in Iraq during the first Gulf War, several conversations with a friend of mine who sustained a brain injury about three years ago, but has never gotten help for their injury — and is making increasingly poor choices about their life, their relationships, etc… all the while saying they need to find a therapist to help them deal with childhood trauma. They need a neuropsychologist, more like… As for the reading, check this out: Two Must Reads: The struggle for comprehensive PTSD and TBI treatment. I skimmed through it quickly, but I’ll have to go back to it. And I recommend you check it out, as well.
In thinking about the conversation I had with the ex-Marine, what struck me is how he talked about dealing with the incredible challenge of having to do things that were against his own morality, like kill people and destroy things. I was reminded of my post a while back about how war damages the souls of soldiers when I was talking to him, and he said there were several things that he and other military members of his family have done to cope.
The first is talk to somebody who understands — veterans in the family with whom he and other soldiers in his family can talk, have been so critical. The other is to find a way to make peace with things. Find a way to make it okay, on some level, that this is happening. Through faith. Or some sort of belief system.
In thinking about the conversations with my BI friend, I am starting to take notice that all their talk about trauma and dealing with it, is set against a backdrop of the BI they sustained five years ago. We have mutual friends who are therapists who are convinced that a lot of people are walking around with suppressed memories of terrible abuse in their childhoods, and that those repressed memories are making them do the things they do. With my BI friend, I suspect that they have been getting the “party line” that they are dealing with old memories coming up, and they don’t know how to emotionally deal with them. Now, I know for a fact that this friend didn’t just sustain a BI three years ago… Back around 1999, they also slipped on some ice, fell and hit their head pretty badly. They were dizzy and disoriented after it, and I noticed them being more volatile afterwards. Then they seemed to get better (although their marriage has been a bit rocky over the years). In the past three years, they’ve made an amazing recovery, and if you didn’t know them before, you probably would never guess that they have this going on with them. But I can tell. Maybe because I’m more sensitive to it — and better educated.
Anyway, this friend of mine is in pretty bad shape, financially, yet they don’t quite seem to get it. They have serious impulse control issues with money, and their spouse doesn’t actively monitor what they are spending on, how much, and how often. So, they have ended up in a jam that might cost them their car or their house. But they keep going along just doing what they do. Whenever I suggest that they might want to take a look at their spending, they get defensive, aggressive, combative. Not pretty. They just blow up like crazy. So, I stopped talking to them about it. They think they’ve found a good therapist, but like the others they have gone to in the past, they may end up not mentioning the BIs, and they may start treating their symptoms as purely psychological or emotional ones.
I really need to say something more to them about this. I think I need to discuss it with my neuropsych. My NP is probably not going to be able to say much, but I do need to ask them if they know anyone like them who has the same orientation towards healing and recovery. I suspect that along with my friend’s childhood trauma, there are some neuropsychological issues that need to be addressed — and it could be that by simply changing a few of the ways they go about doing things, they could benefit immensely.
I just need to find a good way to bring up the subject. They know about my recovery, and they have said many times that they are amazed by how far I’ve come. And, come to think of it, they have also said they wished they could find someone who is like my NP for themself. The thing they have going for them, is they have documented medical evidence of their most recent brain injury. It’s all there, complete with MRI showing the places where they have lesions. So they could get medical coverage to help them defray the costs. That’s huge, considering they have almost no money. Maybe getting some help will help them change that.
So yes, I do need to bring up the possibility of them seeing a neuropsychologist. They can get pretty paranoid, so I need to be careful how I phrase things. But I at least need to try. They need help. And I might be able to help/support them.
One of the things I hear them say is that they’re “too old”. They’re in their 60s and they feel like they’re getting old. But I really believe that they can turn things around. With some basic logistical changes similar to what I’ve done, I suspect they can revitalize their life and not only add years to their life, but add life to their years.
I just hope they don’t end up with a therapist who stirs everything up, tries to get them to “feel their feelings” (trust me, they have no problem doing that), and disregards their TBI history, because they are convinced that all their problems are trauma related. They might only be partly right — trauma includes traumatic brain injury, and I would hate to see that piece of their puzzle ignored.
I’d like to propose something controversial here that probably won’t be well-received in psychotherapeutic circles. I’ve said it before, I believe, but I’m going to say it more emphatically now. Someone recently commented on another one of my posts, right when I’ve been thinking about it a lot, so I’ll say it again:
Therapists/mental health counselors (without a strong grounding in neurological information) are about the last people who are able to effectively deal with mTBI. And in the early stages of recovery, seeing a therapist to “figure things out” can do more harm than good. Much more harm than good.
It’s unfortunate, and I hate to say it, but I believe it to be true, based on personal experience with therapists and with friends/acquaintances who are therapists. What I’m about to say comes from years and years of observation, and no matter how seriously therapists may question my point of view (after all, I might be mentally impaired), I still believe it and I stand by it.
See, here’s the thing — TBI seriously screws with the functioning of your brain. Even a “minor” concussion and shear and shred axons and synapses and all those connectors that you’ve built up over the years to learn to live your life. Plus, it releases interesting chemicals into the brain that kill cells. Don’t be alarmed – the brain is a marvelously resilient organ that ingeniously figures out how to re-route connections, recruit other parts of the brain to do the jobs of parts that can’t do it anymore, and generally adapts to changing conditions in ways we are only beginning to recognize and understand.
The thing is, in the early stages of injury (and by early, I also mean the first couple of years after the incident — TBI is a gift that keeps on giving 😉 ) your brain is still trying to figure things out and it is organizing itself around a new way of needing to live your life. Generally folks with TBI don’t have a full and complete understanding of how they’ve been impacted and how it’s affecting their life – we just thing that the world has suddenly gotten all screwed up for no apparent reason. So, our brains are floundering and confused and not quite sure how to find their way out of the messes we’ve gotten into.
And the reorganization that normally takes place as a natural part of recovering from an injury — the reorganization of our brains along certain lines, so that we can resume some level of functionality — can be a bit haywire. The “plastic” brain is a lot like modeling clay. If you press it into a certain mold and leave it there, it will assume that shape and become like its environment. If you leave a lump of it lying on a table and walk away, when you come back a week later, it will be hardened into a chunk that may shatter if you drop it. If you stretch it into lots of thin, haphazard shapes and you leave it that way, it will harden into those thin and haphazard shapes.
So, when your brain is coming back from an injury and it’s looking for different ways to reshape itself, it can get all pulled in a gazillion different directions, because in the aftermath of TBI, things can be crazy and confusing, and we can come up with all sorts of skewed perceptions of ourselves. And if those perceptions are not questioned, challenged and corrected, they can harden into “truth” — which leads us even further down an erring path — into yet more trouble.
Hm. So, the crazier things get, the crazier you feel, and you wonder if you’re just plain losing your mind. You feel depressed and confused and out of sorts, and you don’t know why. So, you do the “logical” thing and you seek professional help. Your friends and family applaud you, because you’ve been getting harder and harder to deal with, and it seems like you have “emotional problems”. (Well, duh – emotional lability and impulse control are often “bundled” with TBI, as a neat little package of insult, injury, and humiliation for everyone involved.)
The only problem is, the therapist you start to see doesn’t know jack about TBI, and they come from the camp of “repressed memory” and how an unhappy childhood marked by long-forgotten/denied/overlooked abuse and neglect is to blame for adult issues. They believe with all their professional soul that most people are walking around in life cut off from their emotions, and that the true path to happiness is to connect with your inner hurt, name your pain, confront the things you are avoiding, and learn to love your demons.
There’s only one problem — none of what they say actually applies to you. The issues you have didn’t start until after your traumatic brain injury, and prior to that head injury, you were a reasonably happy and functional person with their share of troubles, but no “ticking time bomb” of forgotten abuse and neglect to throw you off course. They think that like certain childhood abuse survivors, you have been in denial most of your life, until you reached a certain point in your life when you had “advanced” enough to confront the challenges of resolving a difficult childhood… and they’re going to help you do just that — get in touch with your repressed memories, love the shadow, dance with your demons, and ultimately come to accept and love yourself, no matter what.
What they don’t realize, however, is that your brain is still recovering, still changing, still modifying itself to the world as it now is (rather than as it was before your injury). It’s volatile and highly subject to suggestion, and you’ve been wrestling for so long with not knowing for sure what’s going on with you or how best to deal with it, that your system is highly tweaked and on an emotional hair trigger. They think you’re in need of emotional “tough love” — but what you really need is some good regular exercise, a daily routine to take the guesswork out of your life, and extra patience and rest.
So, they push you. They challenge you. They test your limits. They try to get you to open up to them… pushing and pushing to get you to “admit” what’s going on inside of you, when internally, you’re in storm of emotion that’s neurologically based and totally inexplicable from a purely psychological point of view. They think you’re in denial and resisting necessary change, and you’re sitting there, week after week, looking at them like they’re from another planet, wondering “What’s wrong with me?!” and getting more and more confused and depressed by the week. You take it out on your friends and family, who have really had it with you, by now, and pull even farther away from you than before, thinking you’re just not trying hard enough.
Your therapist thinks you’re making great progress, getting in touch with your feelings and emotions, letting them come up and processing them. But you’re sinking farther and farther into a morass of emotional confusion, volatility, self-doubt, even desperation. Of course, this is all helping to create repeat business for the therapist who is “helping” you, and they can add even more diagnoses to the insurance bill, so what do they care? (Okay, in fairness, I’m sure that not all therapists are interested in creating repeat business, but any time you combine “care” with making a living, you get into gray areas and tricky territory.)
You’re increasingly worried about your emotional and mental health, and that’s keeping you stressed. You’re not sleeping well, which is taking a toll on your ability to self-regulate — your ability to do, well, everything. You’ve got all of the following TBI after-effects in abundance:
emotions, moods, agitated, can’t settle down, anger, anxiety, feeling vague fear, worry, anticipation of doom, depression, feeling down, excitability, everything feels like an effort, feeling unsure of yourself, feelings of dread, feeling like you’re observing yourself from afar, feelings of well-being, feeling guilty, feeling hostile towards others, impatience, irritability, no desire to talk or move, feeling lonely, nervousness, feelings of panic, rapid mood swings, restlessness, tearfulness, crying spells, feeling tense, feeling vague longing/yearning, etc…
And according to your therapist, it’s all due to mental health issues. Not brain issues. Emotional ones. It’s not your body that’s the problem. It’s your soul. You’re screwed.
Your brain is getting a steady stream of messages from your therapist and from yourself about “the way things are” — which is that you’re screwed up and in need of some serious intervention — and it’s causing your very plastic brain to re-form itself along the lines they’re suggesting. You feel like you’re getting worse, so your therapist dials up the intensity … and tells you all the drama is good — you’re “feeling things for the first time” (which is total, utter crap) and you’re acknowledging the difficult-to-handle aspects of your life (which really only emerged after your TBI). It throws you into even more of a tailspin, and before you know it, you’re planning on breaking up with your partner/spouse/lover, you’re riding the roller-coaster of withdrawal on one hand and aggression on the other, and you’re more and more convinced that you can’t live without your therapist, who is the one person who will sit in a room with you for more than a few minutes, as you’ve effectively chased everyone else away.
Anybody else have this happen to them? It happened to me, and looking back, all the advice from my friends and family about getting professional help from a licensed psychotherapist, was about the worst I could have gotten — and followed. It almost cost me my marriage, it turned my life into an extended experience in chaos, and the only reason I managed to escape the bogus-psychotherapy merry go round, was that I ended up seeing a truly well-meaning but neurologically clueless psychotherapist who scared the crap out of me because they had connections at a local mental hospital who could have me committed (against my will) at their say-so. A narrow escape, but an escape no less.
In fairness, I do believe that a lot of therapists are well-meaning and they are acting on the information and the training they have. But too often that training does NOT include a neurological element, and/or they decide that the awful ills of the world have psychological roots.
Another thing that makes it difficult is that a lot of therapists have mental health issues of their own. A lot of my therapist friends got into therapy because they were helped by counselors, themselves. While I applaud their eagerness to help others, it puts up a huge red flag for me. Because the nature of their mental health issues — incest or eating disorders or some other awful trauma — caused them to distance themselves from their bodies at a fairly early age, and they have grown up living outside their bodies. My therapist friends are by and large antagonistic towards their own bodies. They don’t really exercise, and if they do, it’s “gentle stretching” or yoga or something really non-challenging. They are not on friendly terms with their own physical selves, which closes their minds when I suggest that exercise and taking care of your body (as if your life depends on it, which it does) is key to mental health.
It’s all “mind over matter” for them — and I’ve witnessed the same mindset in other psychologists and therapists I’ve met. Not physically vigorous. Not physically healthy. Sitting all day in small rooms, gaining weight, losing muscle tone, planning on knee and shoulder replacements to repair the damage that their sedentary lifestyles have done to their bodies. And complaining all the while about stupid little things that a little exercise would make seem inconsequential.
Anyway, I’ll quit ranting, now. It’s a beautiful day, and thank heaven I remembered I need to move money into my bank account to cover a monthly autobill. Just to wrap up, when it comes to deciding whether or not you really need therapy, consider your neuropsychological state, and make sure you don’t get stuck with someone who doesn’t have a clue about how neurology can make you a little crazy… but that passes with time, and with the proper training and reinforcement for what your life can really be like.
‘Cuz if you aren’t crazy when you start seeing them, regular visits can make sure you really get there.
I had an interesting conversation with some acquaintances a few days back. For some reason, I ended up sitting at a table with a couple of folks who were lugging around diagnoses of ADD, like so much luggage they had to schlepp around an airport, in perpetual search of a flight that kept changing gates.
One of them embraced their ADD diagnosis with forced gusto, essentially turning the baggage into heavy Luis Vuitton satchels with special locks on all the latches. They proudly proclaimed that they were a “ready-shoot-aim” kind of person, who took things as they came… and proceeded to also comment that for all the balls they have in the air at any given time, they didn’t actually get much done.
Another of them sat silently as we discussed distractability and attention issues and what it’s like to live in today’s world. Not to be dragged down by any ADD/ADHD diagnostic belaborment, I proposed the idea that in today’s world, with all the things that are constantly thrown at us… if we have any interest at all in life, and if we are really invested in what happens to us and the world around us, we darned well sure are going to get “distracted” on a pretty regular basis.
I mean, if you give a damn about what’s going on around you, and if you have a deep and abiding interest in your surroundings, and your surroundings change and evolve, how can you not pay attention to shifting things?
“If you’re really, really alive,” I proposed, “you’re going to be prone to be distracted.”
The one with the “expensive luggage” just looked at me.
The quiet one got up and gave me the biggest hug I’ve gotten in a long time.
I checked my stats, and there are all these search engine searches in my stats results for about the past year having to do with people looking for info on being in love with their therapist.
The malady seems to be going around…
Personally, I’m highly suspect of therapists. This is because I know a lot of them, and I know for a fact that none of them are any more mentally healthy than most “unhealthy” people I know.
The fact that they are dispensing mental health care to others worries me a little bit. It truly does.
One thing I’m not overly fond of, is the tendency of therapists to simulate parents or significant others, so they can establish an intimate bond with their clients.
It seems downright creepy, in fact. I suspect it happens more with opposite-sex situations — female client, male therapist — but maybe it happens the other way around, too.
Either way, the dynamics are just too weird. Therapists need to get their own lives and stop using their clients as pseudo-lovers. And clients probably need… well… less therapy. Maybe?
The whole business of transferrence and regression raises lots of red flags for me, but it seems to be quite widespread. It’s just not the right thing to do, in my opinion, especially considering that lots of therapists have their own screwed-up issues, and it’s a rare individual who can actually manage their intimacies. When you get into a position of such power and influence over another — which therapists often do — it opens the door to a whole world of hurt that is downright dangerous.
Of course, the therapists get to charge you money for it, and they can always walk away from the situation using their “professional” discretion. They’ve been taught how to ply a powerful trade, but very few clients actually know what they’re up to.
Until it’s too late. And then, well, it’s too late.