Understanding the trauma in traumatic brain injury

I’ve been reading Robert Scaer, M.D.’s book The Body Bears the Burden, thinking a good deal about the role of trauma in traumatic brain injury.

Trauma in TBI, I believe (from personal experience and observation of others’ lives) happens both during the injury and afterwards.

It’s not just the injury itself that brings on the terrible sense of threat to your very existence — it’s the life afterwards that emerges, when you are forced to face up to changes in your life and your personality and your capabilities that require a whole new way of working.

The repeated shocks and hurts and surprises and disappointments and the overwhelming sense that you’re not who you are anymore — and your whole existence is in question — threatens us on such a deep level, that the trauma of the initial injury can sometimes be dwarfed by the after-effects of the changes.

Suddenly, you’re angry all the time — for no apparent reason.

Suddenly, you can’t read things and understand — and you don’t find out till after your job (which depends on your reading comprehension) is in danger.

Suddenly, your balance is off, you can’t tolerate light and sound, and you’re breaking down in tears over nothing.

Who IS this person? Where did you go? And who has taken your place?

This change and the questions that arise can be abrupt and alarming — and the worst part is, it’s an internal storm that rages, almost (but not quite) in plain view, vague enough to elude explanation, but pervasive enough to disrupt much about your life — and throw you into a tailspin about the rest of your life which hasn’t been impacted, but might be.

If this doesn’t constitute a threat to your existence — one of the chief requirements for the classification of trauma — I don’t know what is.

So, as we approach traumatic brain injury, let’s not just focus on the brain. Let’s focus on the trauma, as well. Let’s help the countless folks out there — including our returning wounded warriors bearing the signature wounds of the Iraq and Afghanistan wars — who are struggling with both TBI and PTSD, and watching their symptoms get worse for no apparent reason.

Let’s stop dividing up the treatments into “disciplinary territories” and discounting the importance of body and mind and heart and spirit and how they interconnect to create the whole of us.

Traumatic brain injury has been getting a lot of press, lately, with regard to the brain. But unless we seek to understand trauma as diligently, I fear we are a far cry from a comprehensive solution for this widespread issue.

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Fourteen Years Later, Someone Finally Got It…

 

Pat LaFontaine shares about his experience at BrainLine

 

I’ve been watching the video on BrainLine – NHL Hockey Hall of Famer Pat LaFontaine Shares His Story

Hear hockey great Pat LaFontaine recount his story and the steps he took during his recovery after several brain injuries.

It’s a great retelling of a story about how he sustained multiple concussions and could never get answers from anyone… until he was so impacted, it was obvious to everyone that something wasn’t right. It’s also a very telling look into an often hidden world of athletes who know something is wrong, but are told time and time again by doctors and trainers and other expert folks, that they just have a psychological issue and if they just suck it up, they can get back in there and get back to regular play.

Around 19:10 in the video, LaFontaine talks about how he had to keep calling his doctor (the new one who actually had a clue what was going on) to reassure him that the source of his emotions and depression and headaches and not feeling right was physiological. He thought that the doctor was just being nice, because he felt like he was losing his mind.

How true it is.

When you’re going through the disruption of a TBI, you can genuinely feel like you’re going crazy. Things are strange, you don’t feel like yourself, your emotions may be off the charts or completely changed, and nothing seems to be clicking. And trying to get help can be next to impossible, if the doctors you see are not familiar with brain injury/concussion.

This is so important — I wish more doctors and trainers and coaches of student athletes would pay attention to this and keep up to date with the most current research and best practices, so they can not only help people  understand what’s happened to them, but they can also take steps to prevent repeat injuries before healing is complete. Concussions among student athletes is much higher than most guess (and former studies showed), and second subsequent injuries before the brain has healed can be devastating. Second impact can complicate concussion symptoms, and if doctors and coaches and trainers are all pressuring the players to get back in the game and/or telling them that they’re really fine, they can get hurt again — and have even worse problems to deal with after the fact.

I was one of those student athletes who went back in the game after the concussions I sustained, but I’m different from many, in that my coaches and trainers had an eye out for me and kept me out of play (against my will). I was very luck. Lots of student athletes don’t have that same level of vigilance and care.

The one problem was that I’m also one of those folks who never got proper medical care until about three years ago. This was long after the period in which I could file for any sort of assistance or get accurate medical records documenting my injuries — so the chance of me getting any help from any organized sources is slim to none.

I’m on my own.  And even though I have doctors who know about my TBI history, I’m still on my own when it comes to advocating for my own care and well-being. They mean well, I’m sure, but when they tell me that I don’t need to worry about how much sleep I’m getting, because I may not need at least 8 hours a night, it’s not particularly helpful. And when they look you over, plying you with questions about your mood in search of clues about psychologically based depression, completely ignoring the physiological aspects of mood and emotion, well, that’s even more depressing.

I can tell you from personal experience that dealing with post-concussion syndrome is a real bitch, when you have no idea what it is, you think you’re losing your mind, everyone around you is telling you to just “shake it off” — or they have no idea you have anything to shake off, and all they can do is give you a hard time about struggling the way you do. And then you go to the doctor, and they tell you to take a meditation class or relax more or go on vacation to get your mood back in order… this is not helpful, in the case of TBI.

According to the medical/mental health system, without proper medical documentation of my injuries, in the eyes of others, I’m probably mentally ill. All that emotional volatility, the perseveration, the rumination, the difficulties getting started and stopping what I’m doing, the extreme swings in energy levels… Even some of my friends who are psychotherapists have written me off as mentally ill and refusing treatment. These are the same people who have flatly discounted the effect of TBI in my life and claim that all I need is to deal with my difficult childhood to get on with my life.

They’re wrong on so many different levels. Especially about me  refusing treatment — I’m not. I’m actually getting treatment at the level I need — on the neurological level, not on their preferred level. I know that I’m not mentally ill, and so does my neuropsych. And so does every other person who is intimately familiar with TBI and understands the nature of the issues I face on a daily basis. To say it’s maddening to watch the mental health field have a heyday with folks who have been neurologically impacted, would be an understatement. And hearing stories of doctors playing psychotherapist is equally irritating. But at the same time, I can’t let the shortcomings of our “modern” mental health industry impact my own peace of mind and my own mental health.

There’s no sense in that.

So, I seek out answers for myself.  And I share what I find, in hopes that others like me may realize that someone out there actually gets it. They’re are not alone, and there is hope.

Where there is good information and good communication, there is a chance for change.

Or was it a traumatic brain injury?

Source: http://www.army.mil/

I’m reading Mindsight by Daniel Siegel, these days. I’ve been slowly making my way through it while I ride the exercise bike each morning. 15-20 minutes is about the right amount of time for me to read and ride. I’ve been wanting to learn more about mindfulness, and this mindsight variation of it, which (from what I gather so far) involves intentional focus on something specific, seems like it could be quite useful to me.

Apparently, the practice of “mindsight” helps to physically build connections in the prefrontal cortex, which is where complex processing and social “maps” are created. I’m not 100% clear on all the details of it — I’ll have to re-read the book, most likely — but it looks promising.

One thing that grabbed my attention right off, was the opening story about a family that came to therapy, because one of the kids had stopped talking. She was selectively mute, except at home. One thing that appeared to be the main factor was that her mother had sustained a traumatic brain injury in a car accident, and she was no longer the same person she was before the accident.

Needless to say, that got me to sit up and pay close attention.

The story culminated with the little girl starting to talk again, but the mother was still relatively incapacitated. The discussion of the family situation was a lot more about the little girl, than about the mother, so I didn’t get much more out of that account that could help me, specifically relating to TBI.

Later, in the second part of the book, the author talks about a young man who came to see him who was essentially a normal teenaged boy — 16 at the time — but who was having a lot of trouble with feeling low, crying in bouts that came out of nowhere, and flying into rages over relatively minor incidents. His explosions of rage were getting worse, he admitted sheepishly, and both he and his parents were increasingly concerned. He was depressed, and he sometimes had thoughts of suicide.

He hadn’t always been this way — this had started around the time he started middle school, when he was 13. He’d had some outbursts, but everyone thought he was just being a teenager. Still, things were getting worse.

The diagnosis that might have been assigned to him, according to his symptoms, was either depression or bipolar disorder.  But the description of his situation sounded a whole lot like a concussion or mild traumatic brain injury to me, when I first read it. We pretty much always see what we’re trained to see, so of course I thought, “That kid’s not mentally ill! He’s dealing with the after-effects of a head injury that either nobody realized he’d had, or they didn’t take that seriously.”

Indeed, reading about this guy’s situation — the  unprovoked, uncontrolled rages, the bouts of feeling down, the general blah-ness, the crying jags that came out of nowhere, and the embarrassment about it all on top of it — really hit a nerve with me. It sounded all too familiar. And I wondered if he might have had a concussion when he was about 13. Maybe he got beat up at school. Maybe he fell off his skateboard. Maybe he had a bike accident. Most TBI’s happen to boys, so the odds are not exactly against  him having sustained a traumatic brain injury.

I’m no psychiatrist, of course, but I wonder… if mental health professionals first screened for TBI before they cracked open the DSM, what would that mean for mental health care in this country? How many people would be kept off medications — a TBI can really muck with your body’s sensitivities to medicine — that they either didn’t need or couldn’t tolerate? How many people would have actual answers to why their behavior has evolved as it has? How many people would be spared the stigma of a diagnosis of “biopolar disorder”?

Of course, the stigma of traumatic brain injury could be even worse — and given the low level of awareness around what TBI survivors are like in real life (especially mild TBI survivors), a TBI diagnosis could socially do more harm than good. Perhaps.

But still, what if screening for TBI were the first thing that happened, instead of some afterthought or the result of a chance inquiry? What if instead of medications and talk therapy, a regular regimen of exercise and good sleep hygiene and a battery of taught coping skills for their specific difficulties were prescribed? What if, instead of medicating kids who are having these kinds of troubles, we took away their mobile phones and cut off their texting and IM’ing at least an hour before bed, and enforced good sleep hygiene — or else? What if we had them get on a treadmill or an exercise bike for 20 minutes, before anything else happened in the day?  What if people could see past their conditioning and their formal training, to see the underlying physiological/neurological underpinnings of these kinds of conditions, and clinicians were open to the idea that structural changes in the brain could be the root cause — and the best way of addressing that is NOT to numb/dull the symptoms, but build in new neural pathways to “route around” the compromised areas?

If you come to a washed-out road on your way to an important appointment, you don’t pull the car over, wring your hands, talk to someone for hours about how sad it is that you can’t go that normal route… and take a pill to take the edge off your discomfort while you contemplate your bad fortune. You turn the car around, and you go find another route. The brain’s neural pathways are much the same as the roads we travel in larger life — if one route doesn’t get us where we need to go, there are other ways to get there.  Imagine what would become of us, if we all did the logistical equivalent of diagnosing a disorder, and then coming up with a pill to take the edge off the discomfort of our inactivity… Would anything ever get done?

Of course, what really drives a lot of the diagnosing is the DSM, is that fact that it  offers codes to plug into insurance forms. So you can get your care paid for. And it has designations of disorders which map to certain drugs and therapies — TBI is not nearly as clear-cut or straightforward as a “standard-issue” mental illness. Not enough is known about it. And not enough people (therapists, doctors, and other sorts of clinicians) are willing to take on the seemingly daunting task of dealing with an injured brain at the neurological level.

What’s more, there aren’t any clear, easily obtained, ready-made, neatly packaged treatments for TBI, that people can prescribe and dispense. TBI recovery is an extended process, and a tricky one at that. It could lend itself well to a hybrid sort of therapy, which involves cognitive behavioral elements, nutritional and fitness education and coaching, not to mention plain old-fashioned talking things through with an impartial party who has a good head for what you’re tackling. But that sort of treatment (from what I’ve seen) doesn’t yet exist. What’s more, TBI has a nasty way of telling you you’re fine, so even if you do engage in that therapy for an extended period of time, you’re prone to quit, ’cause you think you’re all better now (and then you’re likely to end up back in therapy again, after things get mucked up all over again).

It’s worth the effort and well worth the investment of healthcare professionals to develop a system like this. But until people get more educated — and they stop being so afraid of the brain — and they develop formally recognized ways of dealing with TBI, a mental illness diagnosis is the most likely thing one can expect from a trip to a clinician for help with inexplicable mood and behavior issues.

Which, frankly, sucks.

We need a better approach. And we need something that works. ‘Cause no therapist I know of is going to start poking around looking for trouble that they don’t know how to solve — or that seems innately unsolvable.

Until we do figure out how to solve this brain injury problem, it’s going to keep getting categorized as good old-fashioned mental illness. And in that case, a lot of us are probably safer going it alone, rather than seeking out clinical assistance in the mental healthcare swamp that’s lined by the slippery slopes of DSM-driven diagnosis.

But let me ponder this a while longer. Maybe practicing mindsight will help me settle down the outrage and frustration I feel and channel it into more productive activities, than cursing the darkness that seems to surround us.

Mind the body… mend the mind

I have been having some excellent hours, today. I had an okay morning, talking to people who are interviewing me to see if I can do the job that I’ve been looking into.  I met with the main hiring manager last Friday, and it seemed to go well. But I’m not sure I want the job. And the folks I talked to today were a far sight less amicable than the manager.

But then, they do live on other continents (it’s a “distributed” team) so it’s not like I have to share a cubicle with them, or anything.

All the same, though, I would like to be part of a team that is on good terms, and all on the same page.

I may not take the job, even if they offer it to me. Frankly, I’d rather be doing something closer to coding, and this is a managerial type position.

Anyway, enough of that. I had the good sense today to take a nap this afternoon. I worked from home, and I had the house to myself after about 1 p.m. I lay down for maybe half an hour, but it was good. I woke up feeling human again, which is a slight change, compared to how things have been, lately.

My cardinal sin (if I’ve committed any) in the past week, has been not getting enough sleep. I had meant to rest over the weekend, but events conspired to either wake me up too early or keep me from catching up on my rest, both of which were BAD. And it’s taken its toll. Major meltdown on Sunday, followed by days of feeling hungover and feisty and cranky and damaged. Not at my best. When I really need to be at my best.

All over lack of sleep. Seriously sad.

It’s really quite ridiculous that I would come to this, but I’m a master at complicating every friggin’ thing in my life. How many times do I have to learn AGAIN that I have to sleep, or else? I’m like a bipolar/ schizophrenic/ generally mentally ill individual I knew years ago, who got it in their head on a regular basis that they didn’t need to take their meds. They’d be fine while they were on them, then they’d get off for a while, and they’d end up doing wild things like chasing their partner out of the house and chauffering them several states away to drop them off with friends who would come pick up said rejected partner and escort them to safety. It just wasn’t pretty.

I’m happy to report that my own temporary insanity didn’t result in complete domestic collapse. But it didn’t make matters any easier at home.

So, once again, I have the opportunity to learn that sleep is the ultimate cure for my mental ills. After feeling truly bent for days, now that I’ve had some sleep and I’ve taken some of the pressure off, with regard to my job situation (I just can’t do the pressure cooker thing anymore, like I have been), I’m feeling much better.

And my spouse can quit hounding me to find a therapist. For now, anyway. I know I need to find a counselor of some kind, but for now, I just want to go about my business, regain my even keel, and re-discover the things I love about life. I want to get familiar again with the feel of life without inner turmoil… life without intensive anger management… life without drama… life with just a mellow evening at home after a good supper… life that’s thoughtful and mindful and present and aware. And properly rested.

Heck, it’s springtime! It’s time to enjoy my life, not get bogged down in all sorts of crap and drama and wailing and gnashing of teeth.  I really just want to enjoy myself. Do good things. Write good words. Make a decent contribution to the world around me. Just get on with it.

And that goal is a whole lot more attainable, when I take care of myself, my life, my work, my body. When I take care of my body, especially — when I stretch and lift weights and just move… well, my mind seems to take care of my brain. The intensity subsides, the pressure lifts off me. When I am comfortably  “in my body” as someone once described it to me, I feel fit and worthy and capable and full of enjoyment and satisfaction. And that’s a great thing. Being in good relationship with my body is by far the best way for me to be in good relationship with my mind. Funny how that works…

Personally, I think a whole lot of mental illness issues could be cleared up with proper physical maintenance and care.  Eating the right foods has a way of regulating your mood, as does exercise and movement. And certain types of movement, like tai chi and qi gong and yoga, have actually been shown to benefit the brain. They have images to prove it. MRIs or somesuch. Very cool. That, and meditation of certain types also helps.

On the other hand, eating crappy food, stressing your body with all sorts of sugars and processed ingredients, not eating enough of the right kinds of nutritious stuff, and loading up on high-carb, high-sugar foods, has a way of putting a strain on the body that truly affects the mind in a sickness-producing way. Just the wild sugar fluctuations, the highs and lows and foggy haze that comes from a dietetic roller coaster, takes a toll on the mind and the brain, as well as the body. It throws off your moods, it makes you hard to live with, and it doesn’t benefit anyone in the long run — except the ones who are selling the “food products” we’re eating, as though they were actually food.

For today, I’m eating real food, I’m getting real rest, and I’m not stressing over the future. My job situation will even out. My money situation will resolve. I’ll get myself back on track, and I’ll even enjoy the spring and summer. I know what to do, and I’m determined to do it.

That’s a good thing. A very good thing indeed.

I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

Yet more thoughts on TBI and mental illness

This morning (6/9/9), I took a gander at the ways people have been finding their ways to this blog since I first started it over a year ago.

  • 38 people got here by looking for info about TBI/brains and anger/rage
  • 86 got here just searching on tbi
  • 156 got here by searching for info on interviewing
  • 39 people got here by searching for brain info
  • 225 people found their ways here by searching on tbi and mental illness

Apparently, it’s something people are concerned about.

And so am I.

I’m worried. Really, really worried. Because this society seems all too eager to label people “mentally ill” when they really have logistical problems — it’s not necessarily that they aren’t thinking properly, ’cause of some inner psychological conflict going on — it’s that they can’t think properly, ’cause their brains have been rattled or somehow impacted.

And our society seems all too eager to prescribe medicines for psychological conditions — meds which may actually exacerbate the issues at hand.

For instance, as I understand it, the irritability and temper flares that come with TBI are often due to a “constant inner restlessness” that takes up residence in your head after a brain injury. That constant restlessness can be directly related to something called “tonic arousal” which (as I understand it) has to do with how awake your brain is. After TBI, certain functions slow down — processing slows down, connections that were once intact are now broken, so it takes the brain longer to sort things out. And with that slowness comes a decrease in tonic arousal… which also can lead to attention difficulties… which can feed into all sorts of problems that can make you nuts and drive you to distraction.

TBI >>> less tonic arousal >>> increased irritability >>> more meltdowns, rage, blow-ups, etc.

Now, let’s say some doctor or psychiatrist gets hold of a TBI survivor and diagnoses them with some anxiety-related condition, or some other “psychological” dysfunction. Let’s say the attending caretaker prescribes one of those “downregulators” that slows down the processes that can feed into manic/anxiety type experiences. What do you get when you downregulate someone who’s already struggling to keep up? Decreased tonic arousal. Which can mean more irritability, more temper flares, more rage, more meltdowns… possibly increased violent acting out? Maybe?

Downregulating meds >>> even less tonic arousal >>> even more increased irritability >>> more and more and more meltdowns, rage, blow-ups, etc.

I’m not a doctor, but I don’t think you need to be one, to get this connection. Maybe not being a doctor helps you see it all the clearer, without the long-term effects of that sleep-deprived-traumatized-resident fog that lots of docs get hammered by when they first start practicing.

This really worries me — had I mentioned that?

And given how many people sustain TBIs each year, not to mention how many vets are returning from Iraq and Afghanistan with TBI’s and PTSD, etc., it really opens the door to a lot of crappy medicine and pain for the families and friends of the folks who have given their very brains in service to this country.

I think the only thing we can hope to do is educate people — not so much the doctors, because how many of them are listening? It’s about educating “the people” — the patients who look high and low for help (if they ever figure out that they need — and can get) help. Making sure people have access to truthful and accurate and independent information — and giving them easy and useful ways to wield that info as they defend themselves from the quacks of the world, not to mention Big Pharma.

Ultimately, it is up to each and every one of us to fend for ourselves, but a little help would be nice, now and then…

MTBI and mental health

I’ve been thinking a lot about how TBI (especially MBTI) can either masquerade as mental illness… or lead to it. Not being a psychotherapist, I can’t speak to the intimate details of what makes a person mentally ill, but being a multiple MTBI survivor, I can speak to my own experiences.

In my recent post The Disordered Life and the Need for Psychotherapy, I talked a bit about how my past therapy experience was perhaps not the most effective for me — or the most appropriate. And now I’m starting to think that maybe it did me more harm than good, in some respects. That constant plumbing the depths of my soul, looking for things to explore… well, that frankly wasn’t often a very productive experience. I’d end up in tears, 24 hours later, and I’d be turned around for days, confused about things and off-balance in my life.

Here are some more thoughts regarding the mention over at Get Real Results. Their text is in bold, mine is plain.

Many people who enter traditional psychodynamic psychotherapy do so because they are dissatisfied with their lives.

I got into therapy, because I was having an incredibly difficult time dealing with being a caregiver for a family member who had developed disabling health problems. They had been going slowly but steadily downhill for a while, their health problems worsening without being really addressed. They frankly refused to see a doctor for their problems. They wouldn’t even admit that there was a problem. I had tried to soldier through with them, stick with them, no matter what, and be loyal and helpful and stabilizing. But ultimately, they ended up in the hospital, where they were properly diagnosed and put on a recovery regimen. They were unable to do much of anything for themself, so I took time off from work and helped them get back on their feet. During that time, I was the only caregiver for them, and due to circumstances that are way too complicated to go into here, I couldn’t ask friends of family for help. Only a few were available to me, and then in a very limited capacity. Basically, I was holding the fort down for the two of us, and I was getting increasingly frayed… and incapable of dealing with the situation in a productive manner. My temper got shorter and shorter and increasingly explosive, I was melting down (in private), occassionally self-injuring to relieve the internal pressure, and becoming more and more PTSD-y. It was just not good. I was getting worse by the week, and it was starting to get dicey for the person I was supposed to be caring for. I knew I was supposed to be doing better than I was, and I couldn’t figure out why I was so fragile and inept and having such a terrible time of things. A friend pushed for me to get into therapy, and they found me a seasoned therapist they thought would be a good match. I decided to give it a try.

Their dissatisfaction may be due to being unsure of themselves, goals that are not clear, inability to accomplish what they want, unsatisfying relationships, anger or fear, or they are depressed.

I really didn’t know what was going on with me. I was having a hell of a time understanding what the doctors were telling me, remembering the info I was getting, and if I hadn’t had us all on a very strict schedule each day, with extra attention paid to nutrition and exercise and the most  basic of needs, we all probably would have spun wildly out of control. Friends who knew about what was  going on would would ask me what I needed, but I had no idea. They would try to talk to me about the situation and give me some support, but I coudn’t seem to access anything useful to tell them. I could discuss high-level things like medical research. I could talk about basic stuff like eating plans. But when it came to regular human interaction and talking about what was going on with me, I was at a complete and total loss. People would ask me what I needed from them, and I couldn’t answer. I literally didn’t know. All I knew was, I was locked on target to keep everyone in the household going, and keep my care-take-ee on the road to recovery.

Hoping to find out what was going on, I went into therapy. I really didn’t know what to expect. I had tried therapy years before, and it ended badly. What I did know was that I was wearing thin, I was melting down, I was not holding up well, and I didn’t know why. I needed someone to help me figure it out — and hopefully address it.

Psychotherapy offers them a chance to explore their feelings and past, uncover and resolve the conflicts that interfere with their lives, vent their frustrations, and get on with their lives.

Oh, yes… the exploration of the past… My therapist was really into that. They wanted to know what my parents were like, what they’d done that was awful, what my childhood environment was like, etc. Granted, my early childhood was not easy — I didn’t see much of my parents in my early years, I was in childcare during most of my waking hours, and when I did see my parents in the evenings or on the weekends, they were busy working around the house or they were occupied with concerns other than me. And the times when I did interact with them, I often had troubles. We would start out pretty good, then eventually things would go south, and I’d end up melting down or being disciplined for something I’d done. I had a lot of sensory issues when I was a kid — touch felt like pain a lot of times, and I had a hard time hearing and understanding what people were saying to me — so the “easy” times were a bit more complicated than one might expect.

Anyway, my therapist apparently had a lot of interesting material to work with, ’cause my childhood as I reported it was such a tangled mess. And my teen years and early adulthood weren’t much more straightforward.  Let’s just say I’ve had an eventful life. A non-standard life. A unique experience. I often got the feeling, during our sessions, that they were trying to uncover something really awful that would explain why I was such a wreck.

I have to say, I wasn’t always comfortable with that dynamic. It seemed to me that they were making some assumptions that just didn’t “sit right” with me. Looking back honestly and truthfully — and I’m not afraid to look at bad things that have happened, to me (even though I’m not usually comfortable talking about them with others) — I just couldn’t find any evidence of the kinds of abuse that are usually associated with intense PTSD. Sure, there’s that whole “repressed memory” thing, but I’m sorry, I just wasn’t feeling it. My diagnostic neuropsychologist concurred (on their own steam) that the difficulties I face are not psychological in origin, rather TBI-related, and even before I started the neuropsych testing, I had a strong, undeniable sense that the problems I was having with keeping up with everything around me were NOT just about stress, were not just about an unhappy childhood, were NOT based in psychological problems, but had some other origin. And I had to figure out what that was.

I suspect that hard-core psychiatric/psychological “team members” are going to turn their noses up at this, but you have to understand — I have spent 30-some years specializing in exploring the innermost recesses of my psyche. I’ve got countless journals filled with self-exploration to prove it. I’ve peered into dark corners on a daily basis for decades, and I’m not afraid to confront my demons. Seriously. I’m not. And when I took a long, hard look at the chronology of my childhood and teen years and early adulthood… and up to the present time… and I compared it with the chronology of my regular-functioning siblings… and I compared how I wanted (and tried) to  behave and experience life against how things actually turned out, well it was pretty damned clear to me that there was more than psychology at work.

There had to be a logistical, systemic issue at hand that hadn’t been identified or dealt with. My difficulties stemmed — it was pretty clear to me — NOT from things that were “done to me” but rather how I interpreted and experienced the events of my life. My siblings had gone through many of the same things I had — some of them had gone through much worse — and yet they presented as (and were/are) perfectly normal. Ironically, my siblings are — in the estimation of people who know both me and them — a lot less “together” than I am. But they are/were a whole lot more functional in the most basic ways — particularly socially. They knew how to identify and communicate to others what was going on with them and what they needed in tight spots.

I, on the other hand, had my act together in many ways that they never have, and was a super achiever with a good head on my shoulders in many respects, but in others, I was just a train wreck. I had always had a hell of a time figuring out where I stood in relation to the world around me, what I was feeling, what I was thinking, and what I needed from others. And while the experiences I’d had as a kid were not unlike what others went through, I took everything incredibly hard and couldn’t deal with much of anything. Change was all but impossible for me to stomach. I took any alteration — expected or unexpected — very, very hard. Some changes I took so hard, I apparently blocked them out from my memory, and I only know about them from my parents. Social interactions were pretty much a lost cause with me. Indeed,tending to the most basic things in life were next to impossible… like following conversations, being able to follow through with the easiest of tasks, playing simple schoolyard games like kickball and four-square, interacting with others, and keeping my act together without melting down or going off on wild hyperactive sprees. I was alternately aggressive and emotionally hypersensitive, and I spent a whole lot of my childhood and youth being extremely angry and bitter, and acting out in various ways.

Now, plenty of mental health professionals could probably come up with some workable explanations for all of this, and they’d probably be right. I’m sure plenty of people would have difficulty with what I experienced. My siblings still struggle with the aftermath of similar experiences. But not to the degree that I did/do. In fact, it was the degree of my difficulties that tipped me off that there was something more going on with me. When I took an honest, truthful look at my life experiences, and I compared the outcomes with other comparable individuals, I could very plainly detect a significant difference in degree that — I’m sorry — can’t be explained as trauma or post traumatic stress or even the changing times I grew up in. There was something more going on, which complicated things then. And it was continuing to complicate things for me in the present.

Unfortunately, although many head injured persons fit the above description and thus get sent into traditional analytic or psychodynamic therapy — they often get worse, not better, to everyone’s dismay.

OMG – I wish to hell I’d read this a year ago. It explains so much. Lemme tell you, it’s no friggin’ fun sitting there, week after week, sometimes twice a week, trying “like crazy” to figure out what’s amiss, and why… to be following the standard protocol of plumbing the depths, trying to come up with examples of past distress, trying to identify what’s going on with you… doing what you think (and are told) is the right thing to do, therapeutically… only to be an emotional wreck for days afterwards. And be getting worse, not better.

That’s what happened to me. I wasn’t becoming more centered and together.  I wasn’t better able to cope with the stresses of my life. I was actually having a harder and harder time of it. And I was starting to doubt myself at every turn. I was starting to doubt my judgment, my ability to cope, my sanity. I would sit there for that 50 minutes or so, trying to come up with some examples of what I was feeling or what I had experienced, only to come up empty-handed — and feeling pretty stupid in the process.  I would try to figure out what I was feeling, how I was impacted by such-and-such an experience, what others and said or done that upset me… and try to feel my feelings in general.

Therapy was supposed to help me make sense of things, and in some ways, it did help to have someone to talk to. But it helped me most when I was just talking about my life and not processing it all in a psychotherapeutic context. When I tried to “therapize” my experience, I just ended up feeling stupid and incompetent and beset by all sorts of self-doubt. I often couldn’t follow what my therapist was saying to me, and I could react quickly enough to get them to slow down. I would rush through my sessions with them, just saying out loud what I thought should be said, rather than letting on that I wasn’t following and I wasn’t  articulating what I wanted to articulate. I was so embarrassed that I couldn’t put into words what was going on with me — and in fact, I couldn’t figure out what was going on with me — that I spent an awful lot of time spewing stuff that wasn’t necessarily accurate or reflective of where I was coming from. I had always had such a hard time interacting with people — especially in spoken conversation — I just couldn’t deal with the talk-therapy scene in a really authentic way.

I knew this on some level, though I couldn’t yet put my finger on it, and it made feel like a total fraud and a loser — both because I couldn’t seem to do better in our interactions, and because I didn’t know how to ‘fess up … and do something about it.

As a result, a lot of the problems I was having became even worse, and I started to blow up and melt down and make really stupid choices over and over and over again. I went through three or four jobs in the time I was in traditional talk-therapy, and I was stressing to the point of having spells/episodes that looked a whole lot like seizures of some sort.

Not good.

This happens because the disorder in their lives reflects not primarily underlying psychological conflicts, but the damage to their brains that has resulted in cognitive and executive dysfunctions.

Amen to that. I couldn’t for the life of me figure out why I was screwing up, left and right. I was getting in touch with my feelings, I was feeling them. I was talking about my difficulties. I was releasing old hurts. I was doing what was supposed to be done — or so I thought — but my life was still on a collision course with… well, me. I was making all sorts of bad decisions, and my therapist gave me room to “explore” them as I wished. The only thing was, the decisions put me on a really bad path to some serious professional peril — and I wish they’d spoken up and corrected some of the shitty thought processes that were in play. I wish they’d challenged my thinking on a bunch of subjects. I might not have made the choices I did, and done the stupid-ass things I thought were such good ideas at the time, if they’d just questioned me more closely … with the understanding that my brain tends to misfire at critical times. I was cognitively and executively dysfunctional in some pretty significant ways, but they approached my difficulties from an emotional point of view, rather than a logistical one. They seemed to think that if I just had a better sense of self, and if I overcame my low self-esteem, I would be able to get my life back on track.

Uh…. NOT. Self-esteem has nothing to do with any of it. Nor lacking sense of self. It’s basic system issues that plague me. If anything, my sense of self is my strongest suit, and my self-esteem is for the most part quite intact. But all of my self-regard is useless, if my brain is misfiring and giving me wrong bits of information about what I should do with all that self-esteem and identity stuff.

This has gotten me in trouble more times than I care to think about. I swear… I’ll be feeling really strong and good about how I can do anything I put my mind to… but I won’t realize that fatigue is getting the best of me, and I’m missing cues and clues about what’s going on in the world around me. And I’ll screw up the job I’ve started — like a spreadsheet of numbers I’ve collected, or a piece of programming code I’ve written. I won’t muck up because I don’t feel good about myself, but because I didn’t take the time to walk through the steps of the job I’m doing… and I’ll screw it all up, miscalculating and end up with the wrong answer entirely. Broken program. Wrong numbers. Messed-up results — not because I lack self-esteem, but because my form was crappy.

Low self-esteem wasn’t the source of so many of my problems. MTBI was. Low self-esteem was an effect of the underlying problems — not a cause.

My old therapist also seemed to think that if I looked too closely at the ways in which I was deficient, it would take a toll on my self-esteem. If I explored the details of my screw-ups, I’d get down on myself and lose ground, psychologically. Untrue, untrue, untrue. It was in NOT looking at how I was screwing up, that I got into trouble, because I could never correct my mistakes so I’d do better the next time.  They spent a whole lot of time trying to reassure me that “I could do it”, without empowering me to actually do it in the way I needed to. Actually, I couldn’t do it — at least, not without help. There’s no shame in that, but the way they went about things, they actually made me feel as though there was.

Their lives are disordered because their brains are disordered.

Uh, yah. And acting like I was cognitively and excutively intact, was a huge mistake. For them, and for me. I guess I just didn’t grasp the extent of my difficulties, nor did they. They seemed to think that my lack of initiative stemmed from emotionally based depression, rather than a physical slowing of the brain processes… that my difficulties socially came from low self-esteem, rather than a long history of mucked-up relationships that stemmed from behavioral issues that began around the time of my first TBI and got worse with every successive one. My life, while full and whole and complete and highly functional in some ways, was in a total shambles in others.  It seems to me that that should have raised a flag of some sort — why does someone who is such a top performer and peak achiever in significant ways, also show such profound deficits in others? It’s not emotional in nature and origin. It’s neurological.

“Talking things out” does not solve the problem and may worsen it.

Which it did for me. Talking just made everything worse — it was all talk, no action, and if I talked about my difficulties, their main approach was to reassure me that I was an okay person (which I already knew!) rather than encourage me to deal with the logistics.

This is because traditional therapy removes structure and encourages the spontaneous expression of whatever thoughts and feelings seem most important.

Yet another contributing factor. OMG — can I tell you how many sessions I just rambled on and on without any particular direction? It may have seemed like giving my emotions free rein was a good idea, but they clearly didn’t know how capricious my brain can be around thoughts and feelings. Without structure and purpose, all that cognitive energy just went flying all over the place, leaving me even more confused than before, in many ways. Which did not support my mental health.

Such a process is guaranteed to lead to further disorganization and confusion in a person whose major problem is structuring and organizing the thinking processes, while trying to keep surges of emotion from washing everything away entirely.

Amen to that. Now I can see why my present therapist, who is a neuropsych by training, is constantly steering me away from the emotional exploration I became accustomed to. This new therapist (NT) takes a totally different approach from my Old Therapist (OT), and I have to admit it confused me at first and made me angry and disoriented. I was accustomed to therapy being about venting and “releasing”, but NT was focusing on logistics. And steering me away from overly emotional responses to every little thing (which had been encouraged by OT before).

When individual “therapy” is a successful adjunct to a rehabilitation program, it is a structuring, supportive, problem-solving approach.

And so it is — this new approach with NT is so much more helpful to me. And to everyone around me. My family members have commented that I’m doing a whole lot better, now that I’m seeing NT, and I can tell a huge difference. NT is very supportive, but they don’t let me get away with crappy cognitive processes, and they make me stop and think things through before I take action I’m talking about. They’ve already “talked me back from the edge” of doing something really stupid, a number of times. And this in only a few months. Plus, they’ve talked me through some wrong assumptions and bad information I was working off of, for nearly 20 years. They are talking me through thought processes that have been deeply flawed — yet rote — for decades, now. And I’m revising my perceptions in the process.

That’s just huge. And it’s something that I, as an MTBI survivor, need desperately. I need to be stopped and questioned and challenged. Even if it makes me uncomfortable and mad. I need to be forced to think things through in a careful and deliberate way, not just fly into situations thinking I can do everything on reflex. I can’t. I’m not sure I ever could. But this is the first I’m realizing it fully.

But at least I’m realizing it now. So I can actually do something about it. And make some real progress!

This does not mean that head injured persons cannot have mild or severe psychological problems that either result directly from, or exist (usually existed) separately from the results of their injury.

In my case, I would say that a fair number of my psych issues have stemmed from my long history of screwing up due to MTBI problems. There’s only so many false starts and cock-ups you can commit, until you start to be convinced you’re an idiot and don’t deserve a full and fulfilling life. There’s only so many relationships you can blow away, before you start to think you’re unfit for society. And having people make fun of you and bully you and ostrasize you and tell you you’re lazy and stupid and slow and whatnot also takes a toll.

I’m not complaining and I’m not crying boo-hoo.

I’m just saying…

They can, and often do. It does mean, however, that the traditional psychodynamic approach seldom offers the head-injured person relief from their disordered life.

Yes to this. To get relief from my disordered life, I need specific coping strategies and tools in my “toolbox”. After I’ve stopped making a mess of everything I touch, I can start to rebuild my self-esteem. But not before then.

The psychotherapist who specializes in brain injury must have an appreciation of the impact of brain damage on the patient’s capacity to benefit from the process of therapy.

Which my OT didn’t, I don’t think. At least, I don’t think they understood just how deeply I’d been impacted by a lifetime of injuries and the resulting effects.

Rehabilitation professionals should seek out such specialists if their clients require psychotherapy.

And clients should do the same.

I’m really hoping that this post has offered some food for thought to therapists and clients alike. It’s just so important, and there are so many critical considerations to go into this.

If TBI isn’t considered fully in therapy, the process itself can wreak havoc in an already disordered life… making things worse in the process. Folks may disagree with what I’ve said above, but that’s just my own experience and perception.

Therapy should be helpful. I think we can all agree on that.


TBI and Mental Illness

I found an interesting post over at Lawyers Attorneys: Brain Injury and Schizophrenia: How to Deal

For victims of a traumatic brain injury (TBI) and their families, side effects such as bipolar disorder and memory loss are tragic, but well known and well understood. But in the last decades, scientists have begun to study another serious side effect of brain damage that may go undetected: schizophrenia.

What is Schizophrenia?

Schizophrenia (Greek for “shattered mind”) is a psychotic disorder that affects behavior, mood and thinking. The term was originally coined as “the schizophrenias” because of the wide variety of symptoms characterizing the condition. A misperception that all schizophrenics hear voices is actually untrue. It is a symptom in some suffering from schizophrenia but not all. Psychologists break symptoms of schizophrenia into three categories:

. Positive symptoms are behaviors that are not present in normal individuals. Other symptoms include hearing things, delusional though as well as sporadic thought.

. Negative symptoms are symptoms showing loss of normal abilities. They include loss of ability to show or feel emotion, lack of motivation and trouble with speaking.

. Neurocognitive defects are problems with brain function in areas such as memory, problem-solving, attention and social functioning.

Schizophrenia Related to Brain Injury in Patients

Scientists have established that psychiatric conditions such as bipolar and anxiety disorders are more common in patients who have suffered from traumatic brain injuries. Schizophrenia itself has been associated with individuals who have previously suffered brain damage regardless of family history. But it is only since the early 1990s that researchers have begun to explore in depth that connection between brain damage caused by traumatic brain injury and schizophrenia.

Schizophrenia and Brain Injury: Recent Studies

. Among the findings of those studies:

. TBI-associated schizophrenia is true schizophrenia, not another disorder with similar symptoms, according to a 2001 study by Columbia University. Schizophrenia and TBI are now being associated as hand-in-hand illnesses, one usually occurs in the victim of the other.

. Another study in the same year at the University of New South Wales in Australia discovered that TBI patients with schizophrenia-like psychosis had more widespread brain damage and cognitive impairment than TBI patients without psychosis. It also suggested that a family history of schizophrenia and the severity of the brain damage sustained during TBI increased the risk of schizophrenia.

. Scientists at the Hawaii State Hospital found in 2002 that it took an average of four to five years after a traumatic brain injury for psychosis to manifest, with most cases arriving within two years. Psychosis may be the result of trauma and blunt force to temporal and frontal lobes, for which researchers are attempting to determine.

While the complex nature of schizophrenia makes its cause unclear, as the last study suggests, there is evidence to believe that brain injury directly causes schizophrenia, by damaging the areas of the brain that control higher functions. There is also evidence that a traumatic brain injury may cause psychosis indirectly. Scientists believe that schizophrenia is caused by a combination of genetic susceptibility to the disease and an emotionally or physically traumatic experience that triggers this susceptibility. Researchers are finding that TBI and the trauma that can occur can actually trigger schizophrenia.

Many physicians know a traumatic brain injur may cause neurocognitive disorders such as trouble with speech, and psychiatric problems like bipolar disorder, but not all are aware of the growing evidence linking schizophrenia with brain damage. It is imperative that after a TBI accident, that a victim consult a psychiatrist to ensure that they return to normal behavior. In addition, brain injury patients and their families should consult an experienced brain injury attorney as they seek to recover costs for expenses such as lost wages, current medical costs and future medical care.

A couple of things came to mind when I read this:

  • Okay, so does it mean I’m going to lose my mind, because I sustained a TBI? Am I headed for a psychotic break?
  • If head-injured folks are given proper treatment, rest, nutrition, and time to heal after their injury, will that help prevent a later development of mental illness?
  • How is that these symptoms are ascribed to schizophrenia:

. Positive symptoms are behaviors that are not present in normal individuals. Other symptoms include hearing things, delusional though as well as sporadic thought.

. Negative symptoms are symptoms showing loss of normal abilities. They include loss of ability to show or feel emotion, lack of motivation and trouble with speaking.

. Neurocognitive defects are problems with brain function in areas such as memory, problem-solving, attention and social functioning.

I don’t know nearly enough about schizophrenia, but it seems to me that calling a neuro-physical condition a psychological one not only makes it difficult to properly diagnose, but also makes it difficult, even dangerous, to treat. Approaching an actual physical condition (or a neurological one) with a psychological approach might actually do more harm than good — convincing the specialist and the patient that there’s something wrong with them rather than something wrong with their bodily system.

Might this not actually make matters worse? I think psychotherapists and psychiatrists really need to think this through — familiarize themselves with TBI and its effects and realize what neuro-physical issues might truly come up along the way that mask themselves as psychological issues, and realize that they might be barking up the wrong tree.

Misdiagnosing TBI as schizophrenia or some other psychological disorder is dangerous, not only for the patient but also for the clinician, and it makes both parties chase the wrong ghosts. Not good for anyone involved.

(Note: I have more thoughts on this at this post – More thoughts on Brain Injury and Mental Illness)

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