Crossing the river(s) when the bridge is washed out

I’ve been thinking a lot about how my brain developed over the course of my life, wondering if/how my early mtbi’s affected me.

I have to say, it’s a bit confounding. It’s hard to see where the differences between me and everybody else are just regular personality differences, and which ones could be related to my falls and accidents and the assault when I was eight. I’ve actually remembered more incidents, over the past few months, most notably an incident when I was in daycare as (I believe) a 4-year-old.

I don’t remember much — just climbing up some stairs when some of the older kids encouraged me to come play… then running and jumping a lot… and then lying on the ground, looking up at an older kid looking down at me… and one of the other kids running downstairs to tell the lady who watched us all that something was wrong… the lady coming at me, looming over me, checking me over… yelling at the big kids… lots and lots of yelling. I’m not sure if my parents ever found out that something happened, but I remember trying to get upstairs a few more times, but the lady who ran the place wouldn’t let me, which really made me mad! It was fun playing with the big kids. I didn’t want to be stuck downstairs with the “little peepies”. I wanted to run around and play with the big kids.

I think that I may have been kept downstairs because I was small for my age. A couple of my younger siblings were actually bigger than me, till I was about 12 years old and I started to grow. I was a little kid, so I think the lady who kept me probably told me to stay downstairs so I would be safe.

Clearly, that didn’t work. If memory serves — and there’s the distinct possibility that it doesn’t. At least, in this case. I was reading a book, lately, about how the brain doesn’t always store the information it’s exposed to. It’s not like a tape recorder or digicam. It doesn’t just take in everything it’s shown. And sometimes it “records” things that never happened. So, I could be wrong about this — yet more fiction about my life…

But I’ve felt for a long, long time that something bad happened to me when I was little — in day care — and I always had this faint memory lurking in the back of my mind. It’s always just been there, I just never paid any attention to it. But then, the other week, all of a sudden, I got this big Wham! of a hit of the sequence of events. Like all of a sudden, they “clicked” with me, and I could see it all happening in front of me, like it was yesterday.

Hmmmm…

I also remember falling down the stairs more than once when I was a kid — one time in particular, I went down and slid the whole way down the carpeted stairs, banging my head on them, one at a time. Similar to my fall in 2004, which anniversary is coming up soon, but when I was little, I hit just about all the stairs on my way down. I can still remember the feeling of my head bouncing off the stairs — bang-bang-bang-bang-bang-bang-bang-bang-bang-bang — and the dull fog that enveloped me when I got to the bottom.

Man, oh, man…

Well, anyway, I know that I have a long history of head traumas — plenty of them subconcussive, as I was a very rambunctious kid with a lot of energy but not quite as much balance… I was always biting off more than I could chew, energy and coordination-wise. So, I fell down a lot, hit my head a lot, ran into things a lot. I got banged up, bounced back up, and got back in the game. I was game. Totally. Always up for more. Just try and hold me back…

Sometimes, people were able to, like the lady who watched me when I was little. But most of the time, they weren’t.

I showed them. I could do it. I’d be up and at ’em in no time. Sure! I could do it!

Now, I’m dealing with the after-effects of my (sub)concussive childhood. And I’m wondering if the impacts over the years had a lot to do with how my brain developed. I have to say, although I have some complaints (who doesn’t, tho?) I’m pretty pleased with how flexible my thinking is, and how well I can perform, by and large. I tested very high in my neuropsych evaluation – high 90’s, percentile-wise. In my moments of self-satisfaction, I imagine I’m a genius or a savant of some kind. (Ha – yeah, right – when I figure out how to keep my study clean and get stuff done when I’m supposed to and make it to the train on time, then I’ll qualify). I have to say, though, I don’t have that many of those kinds of self-satisfied, self-congratulatory moments (I should be so lucky), so I try to savor the ones I have.

But anyway, back to the washed out bridge thing. I’ve heard head injury described as a shearing of fragile connections in the brain — the fine connectors get disconnected, sheared, frayed, and generally disrupted. Kind of like the frayed strings in my sweatpants when I was a kid and I wore my sweats to shreds. And the routes that normally connect the different parts of the brain end up having to re-route to find other ways to connect. And that’s where the fatigue comes from. And the constant restlessness. And the agitation. The brain has to work all the harder to do basic, regular stuff. It can do it, it just takes more effort. The ways that are usually used, the pathways that everybody else seems to have intact, don’t quite work the same for us.

So, we mtbi survivors have to find other ways to get down the neural pathways of our lives. We have to find other routes, when the highways and byways of our brains are washed out by the storms that take us by surprise. The traffic of our brains doesn’t stop — not as long as there is life in us. It just keeps coming and coming and going and going, and when it comes to a place in the road where a bridge used to be, or a paved portion is mising from a huge-ass virtual sinkhole that opened up under it, or there’s a huge fallen tree getting in the way, we — the traffic in our brains — have to find a different way of getting where we need to go.

And I think about all the times when I was a kid, feeling like I was so far behind, just struggling to keep up with what was going on around me, hassling and hassling and hassling over every little detail… all the while seeming to be fine, because I learned pretty early on to be stoic and not let on when I was having trouble — and anyway, I was a tough little kid who didn’t take shit from anyone — and I think about my brain and how hard it was working to put two and two together…

Man, I have to hand it to myself for not going crazy. Granted, I was a strange kid who went off on horrible tantrums, beat up on my siblings, and had all sorts of weird habits, like rubbing through the satin edge of my blanket because the feel of the satin between my fingers was the only thing that would calm me down enough at night to get to sleep… I won’t go into the hiding in dark corners and talking to myself for hours on end and tearing out clumps of my hair — that’s a tale for another time. But all that disturbance aside, I actually came out okay. And nobody I know seems to have noticed there was something really amiss with me.

Of course they didn’t. I learned a long time ago, to hide what goes in with me. In fact, it wasn’t until I realized I was several hundred thousand dollars poorer than I’d been three years before, and I couldn’t explain to myself exactly why or how or when that had happened, that I noticed there was something amiss with me.

Crazy.

Anyway, something must have worked, because here I am, relatively normal, as far as anyone else can tell, testing well, for the most part, in my evaluations, and able to hold down a job and advance my career. Maybe I’m just fooling myself and I’m in for a rude awakening, when I find out that I’m not nearly as competent as everyone else seems to think I am. Maybe I’ll crash and burn. Maybe I’ll self-destruct. I don’t plan to, and I don’t think I will, but you never know.

All I know is, all these years, whether because I’ve kept busy or just kept moving, I’ve been able to re-route my brain around lots of obstacles, and find other ways of getting where I need to go. I may have had all those falls and all those injuries, but if anyone is a testament to neuroplasticity, I am. I’m serious. All the crap that’s gone down in my life, and miraculously my brain has managed to adapt, grow, change, and not show up horribly deformed on my MRI or register more than slight abnormalities on my EEG. For all I’ve been through, for all the crap that’s been done to me, and the wrecks I’ve survived, I’m doing okay.

Even if the bridge is washed out in places, there’s plenty of territory to discover while I’m bushwhacking my way through the underbrush. And if I’ve learned anything from this life, it’s that if you just keep going and use your good sense and you don’t go out of your way to do genuinely stupid stuff, you can find your way back to a beaten path of some kind. It might not be the road you left, and it might not be the road you were looking for. But sometimes a detour is the best thing for us.

Just keep going.

Advertisements

Connections between pain and PTSD

The past couple of weeks have been crazy for me, and it’s taken somewhat of a toll. I’ve been busy with work, busy with other activities, busy, busy, and more busy. I also did some traveling for about a week to out-of-state relatives, for a big family get-together. In and of itself, it was a great time. But the change in my schedule, the long hours of driving — over 30 hours, all told, in the car — not being able to get enough sleep, and the change in food choices (how do they eat that stuff?) all threw me off, big-time.

I managed to keep it together and not completely blow-out/melt down during the trip, or immediately afterwards, which often happens when I travel to this particular branch of the family tree. But the past few weeks have been packed full of crazy-busy-ness that I now realize has been a pretty concerted effort to dull the pain of the trip.

I’m not talking about emotional pain… though it’s never easy to spend time as an outsider, when everyone else is connecting and having a wonderful time being together — I’m the oddest bird in the family, and between my difficulties in keeping up with what’s going on around me and my narrow and intense interests that aren’t run-of-the-mill, people often don’t know what to do with me.

What I’m talking about is physical pain.

Yes, physical pain — the kind that burns, that aches, that throbs, that stings. The kind that makes my clothing hurt me, that rakes my legs when my pants rub against them… the kind that makes me jump whenever someone touches me… the kind that sends a shock wave of smacking ache to the marrow of my bones when my spouse puts their hand on my forearm… the kind that keeps me from sleeping, because I can’t stand the feel of sheets on me, but I also can’t stand the feel of air-conditioning blowing across my skin… the kind htat gets worse when I am stressed or tired or upset or all of the above… the kind that I often don’t even know is there until someone makes contact with me, and I jump, and they feel like they’ve done something to hurt me. They have. They didn’t mean to, and they would never do it on purpose. But they hurt me.

It’s not just the emotional pain of family visits that gest me. It’s the physical pain, as well.

Here’s the deal — for as long as I can remember, I have had issues with a whole slew of sensory problems, the most disruptive of which was body-wide pain. I can remember, ever since I was a little kid, feeling like I was being hit, when people would just reach out to touch me in very innocent, social, appropriate ways. I would shrink back from them, and they would often take offense or get angry with me for “rejecting” them. It sorta kinda messes with your head, when the people who love you the most cause you intense pain when they try to show their affection for you. And it tends to muck up your relationship with them, when you can’t accept their (appropriate) affection, but they don’t understand why.

To tell the truth, I didn’t even understand why. It’s hard to explain, unless you’ve been there, but the experience of painful touch is such a visceral, physical thing, it sometimes doesn’t translate into words. It’s just there. You can’t describe it, you can’t even really pinpoint it. Sometimes you have no idea it’s there, until someone makes contact with you. Then, all you know is, it hurts, and you pull away to avoid it, so you can just get on with your life.

And you do things to avoid/mitigate it. You steer clear of expressive people. You avoid demonstrative friends. You always keep more than arms’ length away from other people, just in case they reach out to you. You spend time with people who either don’t like you or couldn’t care less about you, because the chances of them touching you is small to none — and it’s easier to be around those types of people, than the friendly ones who like to make contact.

These things are done on a subconscious, instinctive level, and sometimes they don’t even register with you when you’re doing them. Like pulling away from people when they come close. Like shrinking back from a hug someone is trying to give you. Like jerking away quickly when someone touches you accidentally.

And depending on how sudden or shocking the pain is, it can trigger a whole cascade of other sensations/symptoms/reactions that look a whole lot like PTSD.

Over at Helpguide.org, I found this list of symptoms

Re-experiencing the traumatic event

  • Intrusive, upsetting memories of the event — memories of past painful contact tend to show up suddenly
  • Flashbacks (acting or feeling like the event is happening again) — yes, it does feel like it’s happening all over again
  • Nightmares (either of the event or of other frightening things) — sometimes nightmares do follow an extremely painful episode, tho’ that’s rare
  • Feelings of intense distress when reminded of the trauma — yes, it is intensely distressing to be reminded of it, it just sends me in a downward spiral
  • Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating) — my heart sometimes starts pounding, I tense up, and I feel sick to my stomach, when people touch me, sometimes

PTSD symptoms of avoidance and emotional numbing

  • Avoiding activities, places, thoughts, or feelings that remind you of the trauma — I tend to avoid physical human contact of any kind; women frighten me, because they tend to be so tactile, and it’s literally too painful at times, to interact with them
  • Inability to remember important aspects of the trauma — I tend to block out the particulars of painful experiences. All I know is, it’s hurt me before, like it’s doing now
  • Loss of interest in activities and life in general — Why should I get involved, if it’s just going to hurt like the dickens?
  • Feeling detached from others and emotionally numb — Oh, yes… ’nuff said.
  • Sense of a limited future (you don’t expect to live a normal life span, get married, have a career) — how precisely am I supposed to live fully, if the experience of basic human interactions promises me pain?

PTSD symptoms of increased arousal

  • Difficulty falling or staying asleep — could have something to do with my insomnia?
  • Irritability or outbursts of anger — yet one more contributing factor
  • Difficulty concentrating — it’s tough to concentrate, when you’re on high alert. Especially if you’re working with tactile people.
  • Hypervigilance (on constant “red alert”) — someone might be approaching…
  • Feeling jumpy and easily startled — but of course

Other common symptoms of post-traumatic stress disorder

  • Anger and irritability — not being able to establish comfortable human contact makes me nuts and pisses me off
  • Guilt, shame, or self-blame — why can’t I just be normal like everyone else and tolerate a hand on my shoulder?
  • Substance abuse — been there. Thank heavens that’s behind me.
  • Depression and hopelessness — my occasional visitors
  • Suicidal thoughts and feelings — once upon a time, occasional visitors. Now, very rarely.
  • Feeling alienated and alone — not just feeling… BEING alienated and alone
  • Feelings of mistrust and betrayal — it’s hard to not feel that way, when everyone around you might possibly cause you pain
  • Headaches, stomach problems, chest pain — the first two, yes. The third, not so much

So there we have it — PTSD arising from chronic body-wide pain. Painful touch. There’s even a word for it — Allodynia (meaning “other pain”) — a painful response to a usually non-painful (innocuous) stimulus. I haven’t been formally diagnosed. That would require that I talk about it to my doctor. And talking about it out loud to anyone has never really been an option for me, except for with my last therapist who is long gone by now. It’s just too painful. Emotionally and physically.

I’d rather keep my own counsel and just live my life. Pain-free. Alone, but pain-free.

Being alone not only keeps me out of arms’ reach (literally) from people who may hurt me, but it also keeps emotional upheaval at a minimum. It’s hard to get worked into a state, when you don’t have much contact with people who affect you emotionally. I can block out all the politics and social drama pretty well. But the emotional connections I have with people… well, they’re trickier. So, I steer clear of them, by and large. And I steer clear of emotionally charged subjects with people — like avoiding talking about my chronic pain issues with my doctor.

It’s wild, how emotional distress can heighten physical pain. Emotional pain sets off an alarm state with me, and that alarm state unleases a whole avalanche of stress hormones and hypersensitive biochemical agents into my system. And the buildup of all the stuff that gets “stuck” in my system does not help me. Not one bit.

Over at Healthjourneys.com, Belleruth Naparstek quotes from her book Invisible Heroes and describes it well:

Chronic Pain Conditions
This constant activation of the alarm state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed, automatic, arousal circuitry, peripheral forms of treatment provide only temporary relief.  Constantly activated by everyday sensory cues, normal muscle movement and spontaneous memories, symptoms grow and become more and more entrenched over time.  In other words, this is one nasty gift from the kindled feedback loop that, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and “functional” diseases that have no obvious causes, who have been found to have prior histories of severe trauma.  Probably if we could tease out the subset of traumatized people who experienced substantial dissociation during their trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from posttraumatic stress.  Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain, orofacial and myofascial pain, genito-urinary and abdominal pain; interstitial cystitis; and the previously mentioned headache, fibromyalgia (FM), chronic fatigue syndrome (CFS), and reflex sympathetic dystrophy (RSD); irritable bowel syndrome (IBS), inflammatory bowel disorder (IBD), multiple chemical sensitivity (MCS) and migraine.

And there it is — in part, anyway. The post over at Belleruth Naparstek’s blog asks Is There a Connection Between Fibromyalgia and Traumatic Stress? but it’s not just about Fibro, to me. It’s about the “and more” she mentions. It’s about the “whole lot more”.

So, what the hell can I do about this? I’m of the mind that the best reason to talk about anything difficult, is to figure out what to do about it to make it better. To reduce the quotient of human suffering in the world. That includes my suffering (I’m in the world, after all). What can I do about this pain business?

Well, first, I need to get back on my schedule. I need to get back to my sleeping routine, which I’ve been doing pretty well with. I need to get back to eating the right kinds of foods at the right times of day — and I’ve been doing that pretty well, too. I also need to exercise and do other things that will enable me to discharge some of the built-up stress from the trip. I tried explaining to my new therapist how disruptive that sort of travel is to me, but they didn’t seem to “get” the intensity of it, so I’m not getting much support there. Screw it. I’ll support myself. I’ve been having a lot of good long cries, in the privacy of my own company, over the past few days, and that seems to be helping me. I also need to get back to my regular work schedule and just get some stuff done. Being productive has a way of chilling me out nicely, so I’ll do that.

And drink plenty of water. Take some Advil before I go to sleep. Listen to the Healing Trauma CD from Belleruth Naparstek to deal with the PTSD. Have a good cry. And another. And another. And make sure I let loose in my own company, away from others who neither understand nor want to understand just how hard things are for me… and end up minimizing and negating and invalidating my feelings about what I really go through, and tell me I’m fine and I don’t have a problem and I shouldn’t worry about this stuff,  just because they either don’t have the emotional resources to hang with me, or they’d be too traumatized, themselves, if they knew what it’s really like to live in this body.

Most of all, I need to keep it simple. Count my blessings. Remember just much good there is, along with the bad. And remember, tomorrow is another day, and all things considered, I’m pretty lucky to be alive.

How severe was my injury when I was 8?

My parents are coming to visit me next weekend,and I’ve been thinking a lot about my earlier injuries and how they affected my childhood. How they affected my development, how they affected my interactions with people, how they affected my future. When I was seven, I fell down a flight of stairs and was very dazed and confused and wasn’t able to talk. And when I was eight, I was hit in the head with a rock and knocked out for a while. (I tell that story here.)

In the ensuing years of my childhood and youth, I had more injuries — concussions and falls. It was not uncommon for me, while playing, to fall hard and/or hit my head and get up a little dazed and confused… but keep playing. Just keep playing.

Now, concussions alone could account for a lot of the problems I had when I was a kid — problems understanding what people were saying to me, problems with distractability, problems with temper outbursts, problems with getting really turned around and confused… lots and lots of mood and behavioral problems that my parents handled with faith and prayer and lots of structure, rather than pharmaceuticals.

In retrospect, I think it really helped, when I was young.  The structure gave me a framework to live within, the faith gave me something bigger to hang onto, and prayer offered me a way to ask for help from a Higher Power when I couldn’t find the words or the means to ask for it from human beings. It was a pretty exacting way to live, though. My family was very religious, and my parents were very strict (at that time) about what was permitted and what was not… what was sinful and “worldly” and what they considered pleasing to the Lord.

But while that faith and prayer gave me a much-needed support system when I was young, when I entered my teen years, it backfired. As I grew older, I still had a hard time, cognitively and behaviorally speaking. The problem was, I wasn’t just having troubles at home, I was having troubles out in the world. Teen years are marked by increasing social activities outside the home, and I just didn’t do a very good job of handling myself. I was alternately shy… and openly rebellious. I was alternately a high achiever and a slacking ne’er do well. I did a lot of good and helpful things in my youth, including saving an elderly lady who was trapped when the open door of her car (it was not in park) rolled and pinned her leg to a very large object (I can’t remember what it was, but she was pinned, and the metal of the door cut into her leg — I can still recall the sight of the inside of her fleshy thigh cut open — I guess my brain selectively records images). But I also sold drugs and bought liquor underage and distributed it to friends. I wasn’t a big-time criminal, but my later youth was marked by a lot of the warning-sign activities of criminals in the making.

Jekyll and Hyde… or head injury? Given the number of injuries I’ve had over the years, and the fact that a lot of my rebellious and “alternative” behavior was directly connected with an internal storm of confusion and agitation and rage that never disappeared, only subsided a little, I think the latter applies.

Okay, so all that being said, I have been wondering a lot, lately, just how severely I was injured when I was 8. I was knocked out with a rock thrown by some kids who didn’t like my looks and had been taunting and teasing me and my sibling from a distance. We didn’t respond, and they started to throw rocks. My sibling wanted to leave, but I said “NO, we’re staying right here.” I still feel awful about it; they could have been injured, instead of me. But I was hard-headed and stubborn, and I didn’t want anyone to chase me away from doing what I was doing.

Anyway, after a number of rocks landed closer and closer to us, one clocked me on the head. I recall feeling a dull-sharp impact and thinking, “What was that…?” and then I went down.

The next thing I remember, I was looking up and my sibling was hovering over me, crying, with tears streaming down their face. I was woozy and wobbly and at first I wanted to stay and keep playing, but they were so upset, I realized I couldn’t keep us there. I was also not feeling so great, and they led me home to my parents, who had me lie down on the couch while they called a friend who was a nurse, to find out what to do. I didn’t want to do what they told me to — I didn’t want to lie down, I didn’t want to hold still, I wanted to either get up and move around or go to sleep. I remember trying to sleep, but they kept me awake. I seem to recall being really tired, but also kind of punchy and agitated and restless. Eventually, as I recall, after checking my eyes with a flashlight a number of times, they let me get up and move around. And my life went on.

When I think back on that time, it seems to me that it was a pretty serious deal – but I’m not sure how aware of it my parents were.  Or anyone was, for that matter. And when I think back, I honestly can’t say how long I was knocked out for. I might have been out for a few seconds, a few minutes, even an hour or more. It’s impossible to say. My sibling can’t recall the event clearly, so I can only guess at how long it was.

And up till recently, I’ve been thinking I was out cold for a relatively short time. But it could have been longer. I can’t recall the kids who attacked us being in the field when I came to — I can’t recall how the light of the day was, and I’m not sure if my parents were concerned about my sibling and me being out longer than we should have been.

But to be accurate, there is a chance that I was knocked out for longer than a few minutes. It could have been much longer. And from what I understand, the length of unconciousness is an indicator of the severity of an injury, which can also be an indicator of long-term problems. Given the level of difficulty I had when I was a kid — particularly during and after 3rd grade… from that point on, life was one big obstacle course for me — I have to wonder if maybe I wasn’t injured worse than I thought I have been thinking I was.

I need to do some more research on this… It could be a good thing to learn. And I think it might help me talk to my parents about my childhood. Because despite learning a lot and putting a lot of things together over the past year and a half, I haven’t yet discussed my TBIs with them. I haven’t discussed them with anyone in my family. But next weekend, I think that’s going to change.

Figuring out how to talk to my parents about my childhood TBIs is actually one of the big action items on my plate, these days (in addition to working like a mad person to keep my job and keep up with my work… organizing my study in a way that helps me, not hinders me… clearing out old files and projects that were artifacts of TBI-induced agitation, rather than being something that would ever bear fruit… and tending to my marriage and home life). My folks have been saying for years that they can’t figure out what they did wrong to make me so unhappy when I was little. They can’t  figure out why I took so many wrong turns.  They can’t understand why I was so angry and rammy and difficult — what did they do wrong?

I have to tell them, it wasn’t them that caused the bulk of my many issues. It was TBIs. Getting hit on the head. Hard. And at an early enough age that it sheared and skewed the connections in my developing brain so it couldn’t develop “normally,” no matter what they tried. I have to tell them it wasn’t all their fault, and that all things considered, they actually helped more than they hurt.

For all their flaws, for all the things they might have done differently, my parents did create a home where I was able to develop habits of self-inspection and introspective reflection. They created a very structured and well-organized environment in which I could safely do things like paint and draw and write stories and express myself and learn things and be my own unique (and sometimes very weird) self. Certainly, it might have been helpful, if they had taken my shortcomings into consideration more and not overwhelmed me constantly with so much friggin’ input (my mother has always been a manic force of nature, God love her). But the fact that I’m still here, still standing, still able to keep motoring on, despite pain and agitation and confusion and generally feeling like I live my life in the dark and have to just bumble/stumble through a lot of things the first time, before I figure out how the heck to do stuff… Well, I have my parents to thank for that.

Even if my TBI at age 8 was more than mild — even if it was moderate — they raised me in a way that made it possible to keep going, keep moving, keep making my life the best that it could be.

And for that I am eternally grateful.

Now, I have to figure out a way to tell them, when they come to visit. I don’t think I could live with myself if I didn’t.

PTSD/TBI Factor #1 – Proximity to a traumatic event

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities. (Updated June 10, 2012)

When it comes to who develops post-traumatic stress disorder and who manages to recover from the trauma without post-event effects, how close you are to a traumatic event can determine the degree to which you are affected.

People who are closer to traumatic events have been shown to develop more symptoms — folks who were closer to Ground Zero after the attack on the World Trade Center in 2001 had almost three times as much PTSD symptoms (up to 20%, versus 7.5%) as folks who were in Lower Manhattan, but farther away.

Physical proximity doesn’t always play a role in the development of symptoms. Research has shown that people who watched the WTC attack on television from a great distance, many miles away, developed PTSD after the event, and in some cases, their symptoms were more extreme and persisted longer than folks who were physically closer to Ground Zero.

One of the key factors in all this is not only actual physical proximity to a threatening event — it’s the individual’s interpretation of the even as threatening… their perceived level of danger.

Now, when it comes to this aspect of PTSD, TBI can play a significant role.

But the role that TBI plays can be quite different from the role that other injury situations (like war or motor vehicle accidents) can play. In the case of those other two examples, the danger is immediate, extreme, and it can lead to deer-in-headlights freezing, which “locks” the experience in place, to be played out time and time again. In the cases of “classical” trauma, the single injuring event itself is the culprit. In TBI, while the injury itself can be a source of trauma, very often the injured party has either dim or missing recollections of the event, so like someone who’s drunk behind the wheel of a car who gets into an accident but comes out the other side without any PTSD whatsoever, in traumatic brain injury, the brunt of the trauma is felt after the injury, when cognitive functioning and decision making and perceptions are all out of whack. Not only can you end up making decisions and taking action which puts you in harm’s way over and over again, but your reactions to those situations can be heightened to make matters far more traumatic than they “should” be.

Let’s get into this a little more…

First, brain injury can impact a person’s ability to assess risk. They can end up underestimating the danger of a given situation and rush in “where angels fear to tread.” They’re not necessarily fools. They’re brain-injured.

I myself have been a walking, talking example of this. I can’t even count the number of times I’ve done really dense things that I didn’t realize were dense, till much later. One time stands out, in particular:

One day, a couple of years after my most recent head injury (but before I realized that I had been injured as much as I was) I went hiking bright and early one morning on the first day of deer hunting season. I was wearing natural earth-tone colored clothing and wandering off the beaten path, deliberately following deer tracks because I wanted to “get in touch with nature”. Seriously poor judgment. In the course of my ill-conceived hike, I happened to cross paths with a deer hunter who was watching the very area where I was hiking, gun in hand, ready to shoot.  I was in very real danger of being shot.

Now, I know better. I’m from a family filled with avid deer hunter – my dad and all my uncles and my brother go hunting regularly with almost religious fervor. I know that the first day of buck season is NOT the day to go hiking in the woods, and if you have to, you wear bright colors and you stick to the trail(s). But that morning my brain totally failed me. I literally could have been killed in one of those hunting accidents I grew up hearing about.

Believe me, I’m not proud of this genuinely impaired choice, but it’s a great example of how TBI-limited thought processing can put a person in mortal danger, without them even knowing it.

The second way TBI can contribute to the proximity of danger is by heightening the intensity of one’s response to situations.

For example, a head-injured person can quickly lose their temper in a confrontation with someone bigger and badder and meaner than them. That has happened to me many times, and I’ve been injured in the process. I know from personal experience that an impaired brain can make you think you can take on that opponent — and win — only to have your body find out that’s not the case. And if you piss someone off who carries a grudge, you can find yourself looking over your shoulder at every turn… becoming increasingly paranoid and jumpy… which eventually can add up to a hefty dose of PTSD.

Now, one of the things that Belleruth Naparstek mentions in her book Invisible Heroes (this discussion is based on info from Chapter 4 therein), is that another factor is internal perception of danger/trauma. If someone doesn’t know they’re in danger, they may not be impacted by even a serious event. People who are involved in accidents when they’re drunk have been shown to develop less PTSD than might be expected. That’s not to say everyone should run around intoxicated, only that having your perceptions impaired or dulled or distracted somehow can keep PTSD at bay.

But if you believe you’re in danger — even in the case of a near miss — you can really find yourself on the PTSD ride of your life. It’s your perception of danger that sets off the reaction… which can build and recur, build and recur, build and recur, till you don’t know whether you’re coming or going and you feel like you’re losing your mind. Even if you escape a traumatic situation relatively unscathed, you can end up with some nasty symptoms.

The third way TBI can contribute to PTSD is by slowing information processing and reaction times, so it can be hard to get out of a worsening situation before it turns really ugly.

Remember, slowed processing time is one of the most common hallmarks of mild traumatic brain injury. And fatigue is not only a common after-effect of TBI, but it’s also a factor in diminshed attentional abilities and cognitive functioning. When you’re in a potentially dangerous situation, the last thing you need is to be thinking and reacting more slowly than you could/should/otherwise would. But with TBI and its after-effects, that’s precisely what can happen.

As an example, say you’re driving down a deserted country road after dark one winter evening. It’s late and you’re worn out from a long day, and you just want to get home and fall into bed. Out of the corner of your eye you see a shape standing on the grassy shoulder beside the road. A huge six-point buck comes into view in your headlights. Something tells you to slow down, but tou’re not thinking clearly, you’re tired and foggy and slower than usual, and it takes you a few seconds longer to hit the brake than you normally would.

Suddenly, the buck turns and starts across the road right in front of you. Before you can react, you hit the deer head-on, crumpling the front of your car and inflating the airbags in your vehicle. Your head bounces off the airbags, breaking your glasses, and slams against the headrest. Dazed and confused, you sit stunned for a few moments. Then you climb out of the car and go see what just happened.  As you approach the deer, you feel something sticky and warm on your face. Your broken glasses cut into your scalp, and the cut — like many scalp wounds — is bleeding profusely. Clamping one hand to your head, you you try to drag the deer off the side of the road so you can drive on, but it’s too heavy — the carcass won’t budge.

You head back to the car to find your cell phone, but you’re so confused you can’t find it anywhere. It’s dark, and it’s cold, and your car looks like it’s totaled. Your scalp is bleeding, you’re disoriented and confused, and it’s been over an hour since you passed an inhabited area. It’s too cold to get out and walk anywhere. You’re cut off. Alone. You spend the night keeping your car running, so you can stay warm, afraid you’re going to bleed to death, uncertain if and when you’re going to get help, having countless scenarios of impending doom running through your mind.

In the morning, a local deliveryman finds you and your car and the dead deer and radios for help. A tow truck comes and delivers you to the nearest town, which is just a quarter of a mile away, up the road, ’round the bend you couldn’t see in the dark the night before. You find your cell phone in your car’s glove compartment and you call a family member to come pick you up. Then you get on with the business of dealing with your totaled car, getting back to work, getting on with your life. You seem okay physically, with just the cut (that stopped bleeding) and a nasty headache. But you can’t get that vision of the deer out of your head, and you keep waking up in a cold sweat, your heart pounding, feeling like there’s something sticky on the side of your face.

Now, this is not to say that someone without a TBI wouldn’t have the same experience. But having thought processing slowed can contribute to slower reaction times, poor judgment calls, and impaired coping techniques… which can contribute to and complicate bad conditions, making them worse than need be — and making them seem worse, too. And that can happen not only with someone who has a TBI going into a tight spot, but someone who experiences a TBI and then has to deal with challenging situations with an injured brain. A double whammy.

The forth way TBI can contribute to PTSD is by making everything seem a whole lot worse than it is.

With TBI, impaired risk assessment can go both ways, I believe. It can not only be impaired, but it can be hyperactivated. TBI can make you think things are lot more hazardous than they are, that you’re in more dire peril than you are, and that you need to respond more intensely than you necessarily need to. PTSD alone can do this, but when your brain isn’t firing with all pistons, your impaired judgment just feeds the PTSD fire.

So, even if you don’t end up in that car accident, or you really aren’t in danger of getting your ass kicked by that Very Large And Angry Person, or you walk away unharmed from a fall that was broken by soft snow, your (impaired) perception of “immediate danger” can trigger a bunch of biochemical reactivity that puts you very much on edge and eventually adds up to full-blown PTSD.

Warning, Will Robinson!

Danger! Danger!

You may not be in danger at all. But your injured brain tells you that you are/were. And your impaired judgment, thinking it’s protecting you from a perceived threat, gets the gears going and sets off a potent chain reaction that — while bothersome at first — can lead to serious trouble, on down the line.

So, there are several distinct aspects to how TBI affects the proximity factor of PTSD (including, but not limited to):

  • It can create conditions of actual physical proximity to danger by impairing someone’s ability to detect (and avoid) risk/danger.
  • It can make a person’s responses more intense and/or more precipitous, so they overreact to situations and put themself (unintentionally) in danger.
  • It can keep someone from getting themself out of trouble in a timely manner and keep them from adequately dealing with an existing tricky situation.
  • It can heighten the perception of physical proximity to danger.

All of these (and I could think of a bunch of other examples, but I won’t take up the time here), not only do a number on your head, but also on your body. PTSD is very much about physical reactions… and they tie in with mental processes. So, if your brain is impaired by an injury, and you’re backed into a corner (or think you are), you can end up with a more potent mix of trauma experience that heightens the post-traumatic stress impact.

And that’s no friggin’ fun.

Thinking about PTSD and Tetris…

I’ve been giving some thought to the whole “Tetris fixes PTSD flashbacks” concept, over the past few weeks.

Some people agree, others don’t. Here’s an interesting discussion over at Vetvoice.com about it.

I have to admit, I have found some relief while playing Tetris. It’s so interactively neutral — no people to shoot, no mortal danger to avoid, no sudden loud sounds and flashing colors to tax my already frazzled system. I have tried playing it when I was extremely agitated about stuff that was coming up in therapy… flashbacks, in particular. For whatever reason, I found the flashbacks subsiding and images of dropping brightly-colored Tetris pieces showing up instead of the shadowy figure appearing suddenly in front of me. It seemed me me that Tetris images were literally replacing the unwanted flashbacks.

Or maybe it’s just me. But I can tell you, my system really started to chill out. I don’t think it’s a coincidence.

One of the commenters at the discussion about this over at Vetvoice.com suggested. “And why not win every tetris computer game you play, while you’re at it design a new one!”

It made sense to me, so I decided to do just that. I’ve been working on alternative versions of the game, with different colors. My first attempts are a bit rudimentary, the changes being isolated to the colors alone. But it’s working.

Tetris Screenshot 1

Tetris Screenshot 2

Tetris Screenshot 3

You can get to “PTSTetris” by following this link: http://ptstetris.110mb.com/

I don’t know if it really works, but the logic seems sound. I think we can’t make generalizations all across the board about whether it will fix what’s wrong, but if nothing else, spending a few minutes rearranging colored blocks beats flashing back on wretchedness that intrudes on my regular day, getting all anxious and agitated and freaked out over stuff that happened a long time ago in a very different place.

I’ll probably be creating more color schemes, as time goes on, but for now, at least this is up and running.

Cheers