Traumatic Brain Injury Linked to Post-Traumatic Stress Disorder, Study Suggests

Find the connections to get some relief

I continue to think a lot about the connections between mild TBI and PTSD. After going off the rails last month over some stressful stuff at work… and continuing to struggle with stress and how it affects me, I cannot help but see a lot of connections between the stress I’m under, the way I respond to it, and the way my brain has been working lately.

This article came out back in February, 2012, and I may have blogged about it before — it’s worth mentioning again:

Traumatic Brain Injury Linked to Post-Traumatic Stress Disorder, Study Suggests

ScienceDaily (Feb. 15, 2012) — UCLA life scientists and their colleagues have provided the first evidence of a causal link between traumatic brain injury and an increased susceptibility to post-traumatic stress disorder.

Their new study, published Feb. 15 in the in the journal Biological Psychiatry, also suggests that people who suffer even a mild traumatic brain injury are more likely to develop an anxiety disorder and should take precautions to avoid stressful situations for at least some period of time.

The motivation behind the study, which was conducted in rats, was the observed correlation of traumatic brain injury, or TBI, and PTSD, particularly in military veterans returning from service overseas, said Michael Fanselow, a UCLA professor of psychology and the senior author of the study.

The reasons for this correlation are unknown. It could be simply that the events that cause brain injury are also very frightening and that the link between TBI and PTSD could be merely incidental. Fanselow and his colleagues, however, hypothesized that the two “could be linked in a more mechanistic way.”

Using procedures to separate the physical and emotional traumas, the scientists trained the rats using “fear conditioning” techniques two days after they experienced a concussive brain trauma — ensuring the brain injury and the experience of fear occurred on different days.

“We found that the rats with the earlier TBI acquired more fear than control rats (without TBI),” said Fanselow, a member of UCLA’s Brain Research Institute. “Something about the brain injury rendered them more susceptible to acquiring an inappropriately strong fear. It was as if the injury primed the brain for learning to be afraid.”

To learn why this occurred, the researchers analyzed a small piece of brain tissue, the amygdala, which is the brain’s critical hub for fear learning.

“We found that there are significantly more receptors for excitatory neurotransmitters that promote learning,” said Maxine Reger, a UCLA graduate student of psychology in Fanselow’s laboratory and the lead author of the study.

“This finding suggests that brain injury leaves the amygdala in a more excitable state that readies it for acquiring potent fear,” Fanselow said.

The research was funded by the National Institutes of Health, the U.S. Department of Defense and the UCLA Brain Injury Research Center.

Co-authors of the study were David Hovda, a professor of neurosurgery and of molecular and medical pharmacology at the David Geffen School of Medicine at UCLA and director of the UCLA Brain Injury Research Center; Andrew Poulos, a postdoctoral fellow in Fanselow’s laboratory; Floyd Buen, a former graduate student in Hovda’s laboratory; and Christopher Giza, an associate professor of neurosurgery at the Geffen School of Medicine.

The research was a collaboration between Fanselow’s laboratory, which studies neural mechanisms of anxiety disorders, and Hovda’s laboratory, which investigates brain injury.

“One of UCLA’s great strengths is the spirit of collaboration that allows scientists from very different departments to combine their very different expertises to answer important but difficult questions,” Fanselow said.

This is very encouraging (if I haven’t said it before). The fact that clinical researchers are looking at the biomechanical actions of mild TBI and PTSD opens up new routes for better understanding more pieces of this puzzle. I’ve said a number of times that TBI and PTSD are intricately intertwined in some really fundamental ways, many/most of which are experientially biochemical in nature. And the fact that researchers are now paying attention to this and publishing papers about this, really gives me hope for the future of handling this “co-morbid” condition.

I have also long believed (and I think also said) that mild TBI is especially vulnerable to PTSD development, because by its very nature it is confusing at the most fundamental level — which leads to continual activation of the fight-flight reflex, which ultimately builds up a biochemical load that’s heavy on the stress hormone side — and light on the rest-digest impulse. Mild TBI and its successive “micro-traumas” of continuously baffling and inexplicable experiences, many of which are either negative/threatening or perceived to be negative/threatening, is the experiential equivalent of all those subconcussive hits sustained in football, and the biochemical overload of stress hormones that builds up, day after interminable day, serves to further fry the system and the brain and the circuits which would normally serve to chill us out and manage to find a way around (or through) the troubles in one piece.

Unfortunately, I’m not a clinical researcher with an internationally recognized facility, so there’s only so much that I can do to advance this understanding in the circles where people make the diagnoses and treatment decisions. But I can at least do my part here, in hopes that the people who are actually affected by mTBI and PTSD will find some answers — and relief. And those who treat people with PTSD and/or TBI would be well-served to explore the connections between the two. It is such an obvious connection, when you stop dismissing life experience as “anecdotal” that it surprises me that no one is confronting it head-on. Or that anyone is still being territorial about their explanations for why some of us do and experience the things we do. If the professions would cross-pollinate and cross-promote, they would uncover a vast opportunity to not only expand their service, but come up with a whole new slew of approaches that actually work with those suffering from stress-hormone-overload-induced dysfunction/disorders in the aftermath of TBI.

I can’t control the fields/industries, but I can always hope. And keep working…

The hazards of mtbi micro-traumas

Another Monday, another week. The weekend was pretty good, all things considered. I got a fair amount done, and I also had some time to just relax. Not much, but some.

I did a little reading about “The Cognitive Control of Emotion” by Ochsner and Gross, who say

“Conflicts, failures, and losses at times seem to conspire to ruin us. Yet, as Marcus Aurelius observed nearly two millennia ago, we humans have an extraordinary capacity to regulate the emotions occasioned by such travails. Importantly, these regulatory efforts largely determine the impact such difficulties will have on our mental and physical well-being.”

They also include a good quote from Marcus Aurelius:

If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.
Marcus Aurelius (Meditations)

The rest of the paper is about fMRI results and neural mechanisms, most of which went over my head because I’ve been having trouble focusing and comprehending what I’m reading. I’ll have to go back and re-read it, because I believe there’s something in there I can use. But the thing that I took away from it, is that we actually can choose how we will experience and react to and emote over our circumstances, and the better we are at that, the better off we may be.

Or course, this doesn’t speak to people being in just plain crappy living situations, but there is at least a little bit there that I can use.

Anyway, I’ve been thinking about how bent out of shape I’ve been for the past month or so. It feels like a whole lot is piling up with me, and I haven’t been able to get out from under. Certainly, not getting enough sleep is not helping. I’m working at turning that around. It’s slow going, but at least I’m making the attempt.

And I’ve been thinking about all the things that have gotten me worked up, bothered, troubled, anxious, etc. A lot of those things aren’t even that big a deal, on some people’s scale. But for me they are. And they seem to add up a whole lot faster than one would expect. It’s a little dispiriting, but that’s how it is. Everything adds up. Quickly. Even the little stuff.

Especially the little stuff. I have a name for all those little things that “shouldn’t” bother me — micro-traumas. Specifically, mtbi micro-traumas. They’re the little things that get under my skin and set me off — because I’m tired and/or stressed and/or not paying attention. They’re the little things that “shouldn’t” happen because regularly functioning people don’t have these problems — like waking up one morning and not being able to read or write as well as you could the day before… like forgetting so much stuff that if you don’t write it down, it might as well not even exist… like getting incredibly bent out of shape over developments at work that most people take in stride… like flipping out over dropping a spoon while you’re making your breakfast.

Those little experiences, those tiny explosions, may not seem like a whole lot in and of themselves. But when they happen again and again and again, tens (even hundreds) of times a day, they add up. And they wear at you. It’s like a death by a thousand cuts. It’s not even the exact events themselves that constitute the explosions — it’s the experience of those events, the biochemical bursts and blasts and ka-booms that take place out of sight of anyone else, that set you on edge and tear the living crap out of your interior.

Isolated and not considered in light of the continuous whole, these explosions, these micro-traumas probably don’t look like much to the outside observer, but internally and over time, they add up. And they add up to cumulative trauma — just like all those sub-concussive hits (from practices and full-on collision play) take down professional football players years later, the micro-traumas that bombard mtbi survivors day in and day out also take a toll. And it all adds up.

This is coming back to the ANS balancing issue I talked about yesterday. And it also ties in with PTSD and resilience. I really believe that unaddressed TBI issues — especially “mild” TBI issues — lend themselves extremely well to creating an everyday “substrate” of stress and fight-flight orientation, which erodes our personal resilience and gradually over time in countless invisible ways pulls us down into a way of life that is hallmark PTSD. For all the talk about traumatic brain injury, there is remarkably little overlap between the TBI and PTSD conceptualizations, that I can see. Everybody is trying to establish that THEY are the ones who have it all figured out, and precious few people are giving quarter. But that’s a bit dense and self-serving. It’s also not practical, nor is it accurate. The two overlap and feed into each other — obviously (to me at least) — and any approach to TBI recovery (yes, I’ll say recovery) must necessarily include an approach to trauma that is patently unlike the talk-therapy approaches that just serve to drive us half-mad with all the emotional stirring-up and provocation.

Let me put it simply. This is what I believe:

  • That Traumatic Brain Injury is by nature a traumatic event. It is a physiologically traumatic event. Even if the individual is not aware of their environment at the time of injury (or they forget it due to their brain trauma), their physiological experience nevertheless primes them for trauma.
  • The nature of brain trauma, as a fundamental insult to the very command center of so much of our functioning (as well as the biochemical reactions which take place as a result) puts the body into overdrive to both survive the injury and escape the imminent danger that TBI poses to the individual. The brain has to work overtime to recover and come up with compensatory techniques. And the individual can be in a perpetual state of insecurity and confusion and fight-flight, because their usual ways of approaching life are no longer available the way they once were.
  • The extreme fluctuations of emotion and ability, can fire off biochemical reactions that are disproportionate to many of the events. This is a function of an over-tweaked autonomic nervous system which is “stuck in high gear” like a Prius with its floor mat wedged to the accelerator. The injured individual can be so confused and disoriented that their ability to monitor and understand their own situation can be completely compromised, which leads to more stress — Post-Traumatic Stress.
  • To make matters worse, the general cluelessness (even hostility) of the surrounding social environment exacerbates things even further, by insisting that everything should be fine, that there should be no problems, and that the TBI survivor should be able to function as they did before. This puts the survivor into an all but permanent fight-flight mode, eventually either pushing the parasympathetic nervous system out of the picture or creating wild swings between the two ANS branches, which totally screws things up (that’s my scientific assessment 😉
  • This is especially true of mild traumatic brain injury survivors, whose brains are still rewired and who have to make more subtle changes and advances, in the face of — among other things — cognitive fluctuations, and surprisingly extreme and shocking biochemical reactions to “non-events”.
  • Unless and until a TBI survivor deals with the trauma aspects of their situation (no, not “They did this to me, and it hurt” kind of dealing, but the physiological effects of the biochemical roller coaster), they can continue to suffer and continue to struggle. Long-term prospects may actually worsen, as their post-traumatic stress is exacerbated and accentuated by ongoing issues which have not been properly balanced by exercise, rest, nutrition, and plenty of water.

It might sound over-simplistic, but may be to some extent it is that simple. And in the end, I believe that TBI survivors are not going to get proper care and assistance until the physiological aspects of trauma recovery are fully explored and matured. The vast majority of trauma research that I have encountered has to do with psychological trauma, and certainly there is plenty of that. But approaching trauma only in terms of psychology, and addressing it only in terms of talking and emoting (both of which can be extremely taxing for TBI survivors to do with great success), is just pulling us backwards.

It’s not helping.  There has to be a better way, and I think I have actually found it.

Whether anyone in a position to study this and pursue new courses of treatment is going to catch on, is anybody’s guess. I do believe that the military is the closest to making progress on this front, due to their increased focus on Total Force Fitness. They have a vested interest in coming up with what works, because their (and our) survival literally depends on it. And it is in their research that I find the most hope and the most useful material to work with, at this time.

Researchers at institutions may or may not get it. I think in fact that they usually don’t, in no small part because they are so far removed from the issues, personally speaking. Doctors and therapists may or may not get it, because of their indoctrination and their intellectual biases (plus their own trauma issues get in the way). Those of us out here walking around in the word trying like crazy to figure out WTF is going on in our lives… we’re like mobile laboratories, chock full of anectdotal tidbits.

We’ll see if things change. But for now, it’s time to go to work. Onward.

From the DCoE – Mind Body Skills for Regulating the Autonomic Nervous System

Warrior Resilience Conference – Thank you for your service – at home and abroad

Last June, the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury released a report (pdf) called Mind Body Skills for Regulating the Autonomic Nervous System, which surveys a number of techniques for regulating the fight-flight and rest-digest functions of the ANS.

I may have seen this before, but I honestly don’t remember. In any case, I’m recording it now here on this blog, so I can remember and find it later. I also saved a copy to my hard drive, and I am reading through it.

The ANS has been hugely important to me over the past years of my recovery. When I am able to step back and objectively view my progress and my capacity to live well, I can generally judge from the degree of ANS balance, how happy, productive, and involved I am in my life. More ANS balance = more sense of well-being. Less ANS balance = struggle and difficulty and feeling useless. And that holds true, whether I am more unbalanced towards rest-digest or towards more fight-flight. Either way, it’s a recipe for struggle and difficulty.

ANS balance is hugely important to me. And the mind-body approach is the often-missing piece of TBI recovery that I’ve been filling in myself, along with weekly visits to my neuropsych, to help balance things out. When I have kept my fight-flight/rest-digest nervous system activities in balance, things have usually been going well. When I have not had them in balance, things have gone rapidly south, and it’s taken me weeks to get back to where I am functioning to my satisfaction again.

I’m smack-dab in the middle of one of those recovery periods right now.  It’s taking me longer than I expected, to “right my ship” so to speak, and it’s frustrating and feels defeating, but I do feel like I’m getting there… gradually. I do need to be easy on myself – pushing harder has a way of setting me back, ironically. It doesn’t feel “right” but backing off and paying attention to the small things, while letting events take their course and work themselves out, seems to be what works best for me.

The main thing is to not get all caught up in myself and get down on who I seem to be at the moment. I keep seeing this slogan, “Life isn’t about finding yourself – it’s about creating yourself.” I agree. And I really believe it’s also about creating things that benefit other people — about literally making the world a better place through our words and thoughts and deeds.

When I don’t take care of my ANS, and I allow myself to wallow in that awful feeling of sympathetic overdrive, things tend to not go so well. I also tend to get down on myself AND not be able to see the future prospects ahead of me. The more I strive, sometimes, the more depressed I get — someone once said to me that depression is the result of driving too hard for too long, and having your system get fried, without allowing it to catch up and rest. I can see that in my own life – in the way I get so down, after I have been so up.

My neuropsych once told me about an individual with TBI who had been diagnosed as “bi-polar” by their doctor, and they’d been put on meds for it. The doctor believed that they had a “short cycling bi-polar disorder” where it took them less than a day to run the gamut between manic episodes and a depressive crash. My neuropsych worked with them to work out their daily routines and activities, and when they had gotten some balance, back — poof, the “fast-cycling bi-polar disorder” was gone.

Now, I’m not a doctor, and I’m not board-certified to make diagnoses and prescribe treatments, but in my own life, I can see a direct correlation between episodes of intense activity (even if it is activity for the greater good and/or activity that is beneficial to me), and sinking into a pit of despair. I can see patterns of lots and lots of activity being followed by an extended crash.

So, regulating my ANS — when I remember it — is really a big key to me keeping stable and sane. (If you have any doubts, check out the posts when I have not been at my best – 9 times out of 10, they came at times when I was stressed and in full fight-flight mode without respite.)

Seeing the Defense Centers of Excellence releasing a report on Mind Body Skills for Regulating the Autonomic Nervous System is really encouraging to me. I have been very troubled by the lack of support and assistance that’s been offered to our returning vets (thank you to all of you for your service, by the way). It sort of seems to me that a report like this is a way for the DCoE to provide extended assistance in the way of ideas that people can learn and use to help take care of themselves. I think it would be absolutely impossible for the VA to provide personal assistance to each and every vet who returns — especially because there are so, so many who are returning with brain injury issues, and so little is actually known about brain injury AND each injury is a little different, so short of providing a full comprehensively trained team to assist each vet who returns, the level of care is just not going to be enough, coming only from the VA. There aren’t enough people and there isn’t enough money to do it all from one central source. We literally need to pull together as a country and provide support in a variety of ways.

But a report like this from the DCoE is a step in the right direction.

The cover these topics:

  • Introduction and Background
  • Practices for Regulating the Autonomic Nervous System (ANS)
    • Emotions, Arousal and the ANS
    • Breath Techniques for Regulating the ANS
    • Posture and Tension-Modulation Techniques for ANS Regulation
    • Mindfulness, Meditation and Guided Imagery
    • Mind-Body Programs
    • Biofeedback

There are other approaches, and I’m sure time will show changes to how each of these is perceived. But it’s a start. I’m having a little trouble focusing today and keeping my attention on what’s in front of me, so I can’t speak in depth about what’s there. I haven’t been able to read more than a page at a time, honestly. But in the coming days and weeks, I hope to see that change. And I’m taking steps to get that to happen.

I encourage you to follow the link and read up on it yourself. There may be something good in it. In any case, the report was created in the interest of strengthening troops in the face of new kinds of war, and since dealing with TBI can be a series of battles, in and of itself, I can see how this same orientation might benefit me and many, many others.

These techniques are not just for soldiers — although they were explored with soldiers in mind. They can help the rest of us, too.

Now obviously, there can be no true comparison between coping with the daily micro-traumas of TBI, and being deployed three times to several different desert battlefields. The scale and quality is completely different. But in principle, if not in practice, there are ideas and habits that can cross-pollinate and assist on many levels. In TBI, especially, where we are so often in uncharted territory, it makes no sense to write off a potentially beneficial approach because of perceived differences between cases. We have to pull out all the stops and do everything we can to achieve what progress we can.

Now I need to pull out all the stops and run some errands. Life goes on.

Better today… pain is a bit less

Well, I got some good sleep today. Woke up about dawn (not what I wanted to do), with my joints — especially my left hip — just screaming with tightness and burning. I lay there for a while, willing it to go away… but it didn’t. I thought about getting up and just getting into my day… posting to my blog, or typing up my follow-up questions for the neuropsych. But I was soooo tired.

So, I did what I had done back about 15 years ago, when I was having a lot of pain issues — I found that acupressure point between my thumb and forefinger — in the soft webbing at the base of both fingers, near where they meet — and I applied pressure on that point. I had been told about this point, back in the early 1990’s, and I had used it pretty regularly to help alleviate pain and inflammation.

Apparently, this point not only relieves pain, but it also can help reduce inflammation, which is pretty huge with me.
Hand Showing Pain Point

I used to use this point religiously, when I was having trouble. Then, I stopped… I think because it worked so well, I didn’t have the degree of troubles I once had. I literally was all but pain-free for a number of years, tho’ recently that’s changed.

Another thing I did this morning, that I had done for years, was stretched. I stretched my hamstrings and my glutes and my hips and my lower back… under the covers, as I was cold and lazy and didn’t feel like getting out of bed.

After a little while of doing that, I got a lot of relief, and I was able to go  back to sleep — till 8:00 a.m., which is unheard of!

Woo Hoo!

So, when I got up, I was still a little creaky, but that’s to be expected from all the yard work I did yesterday, not to mention splitting the firewood. I can give my body that.

I’ve been thinking a lot about pain, lately, since it’s come up with me so much. Thinking about what it means, what it’s like to be in pain all the time, how hard it is on your system, how easy it is to slip into feeling like you’re being punished for something. I’ve read that pain is symbolically associated with rejection and isolation, so when I’m in pain, it would make sense that I feel like the world is against me, and I’m all alone. Intellectually, I know that isn’t true, but my body feels like it is. So, I feel even more forlorn than I already do… for emotional reasons. And I withdraw… which makes me less likely to have contact with others — the very thing that can relieve my pain and sense of isolation.

I wonder if this is widespread — especially amongst folks who have neuropathic pain or chronic pain that comes from tbi or car accident or some other sort of injury. Or people who have a history of child abuse or some other sort of abuse that results in a lot of memories of pain. I wonder if there isn’t a whole invisible nation of people in physically-generated psychic pain, whose sense of isolation is so overwhelming, yet so unexplicable, to them, that they are just shells of who they could be. I wonder if physical pain — and our ability to ignore or mask it with other things, like addictions or hyper-activities or just plain blocking it out — might not be contributing to our collective woes in ways we don’t understand… because it’s literally too painful for us to think about it.

When I think about my pain, when it’s really, really bad, I get so upset. I get angry. I get frustrated. I get furious. I act out. And I feel like I’m being punished — for no good reason.

I think that perhaps this condition got me used to the idea that I was unfairly punished for a lot of things in life, so I lowered my expectations, and became all the more antagonistic to the world around me.

And I wonder about the vets who are returning from Iraq and Afghanistan, who sustained tbi’s in the line of duty… getting back to a country that is already foreign to them (tho’ they put their lives on the line for it/us)… dealing with the difficulties of tbi… the twice-hidden disability… and having to deal with pain that has neurological origins. I wonder about them feeling more and more isolated, less and less integrated into society, more and more uncomfortable and angry and, well, in pain… because their brains were changed the day(s) the IED(s) went off near them.

I think of us all… this “tbi nation” of individuals struggling alone and separately, unable to cope effectively because the very thing we need to use to figure out our situation — our brain — is the thing that’s been injured. I think of us all, alone in our rooms in the wee hours of the dawning day, writhing in pain that doesn’t seem to have an origin and won’t let go of us… I think of us struggling with the psychological and emotional impacts of a brain that fails us at the worst possible moments, without our realizing it, and a body that can’t quite seem to get it right, since the accident/injury/attack. I think of us all, lying awake, hurting, angry, confused, desperate, in the wee dawning hours of the day…

And I thank Heaven Above for the point between my thumb and forefinger.

It works for me… and I hope it works for you too.

It hurts like a bitch, the first time I press it, but the pain throughout my body magically subsides, when I do.

I press the point on the side that hurts the most, then I press the other. And I do it again and again throughout the day. I try to stretch. And I drink plenty of water. And I pray. I pray that the relief will continue — at least in part.

Yes, today is better.

And I hope tomorrow will be, too.

Exhausted and in tremendous pain, but feeling great!

I’ve had an extremely full day, today, and I’ll probably pay for it tomorrow… heck, I’m paying for it now. But who cares! I had a great day!

I started out the day reading through my notes from my first neuropsych recap meeting, when the doctor confirmed that yes, there are scientifically detectable issues going on with my brain and my thought process. Some of the things found surprised me a little bit — I had thought I was doing just fine, on some of them, but — as is often the case with me — the very areas where I think I’m doing great(!) are the ones that I’m lagging on.

Things like speed of processing. And memory… short-term recall. Things like how long I can last at certain tasks… things like attention issues… things like language comprehension and learning.

I admit I am more than a little relieved, even if some of the things are bothersome  — it’s not in my head! Well, it is in my head, but it’s not something I made up! As though a lifetime of hassling with all this cognitive-behavioral stuff isn’t proof enough… But for people around me who need a doctor’s opinion to convince them, this should be plenty convincing. I’m so relieved!!!

Anyway, I am compiling question  for the good doctor, which I’ll type up and take with me, so we can both follow along and make sure I don’t miss anything… and the doc will give me more info, and then I’ll come up with more questions… etc., etc. This could take a while, but I’ve been told it’s okay if I take my time. I guess I may need to… tho’ it might not seem to me like I’m being slow 😉

Then, after I pulled together my questions, I actually went for a walk!  Woo hoo. What a beautiful day — clear and crisp and very quiet. I was surprised at how much I saw today. I noticed details about houses in my neighborhood that I never noticed before. I think having the testing out of the way has taken a burden off my mind, which is allowing me to pay attention to more things around me. It feels a little strange to be seeing things that may have been there all along, but at least I’m seeing them now!

It’s been a month or so since I got out of the house on a Saturday to do anything other than errands. I had a great walk in the woods — and I was only startled by one hiker. My hearing has been really acute, lately, though, so the sound of my keys in my pocket and the swish-swish of my windbreaker was pretty distracting. I kept thinking I was hearing the tags of a dog running up to me – I hate when that happens, and I’m taken by surprise – but it was just my keys.

Then I came back home and had some lunch and read some neurology and anatomy texts I’ve had lying around, so I can at least not be completely taken off guard by what my doctor says on Tuesday. When they start throwing around all these terms, I tend to get anxious, if they’re completely unfamiliar. Now, at least I may have more of a chance of not getting spooked by terminology. Sometimes that’s half the battle.

Then I took a nap. Woo hoo! Just for an hour, and I woke up worried and anxious, but at least I did sleep a little.

Then I got up and did yard work… and split the firewood I’ve had my eye on for quite some time. The pile of wood has been sitting under a tarp for more than a year, and I’ve been promising myself I’d split it, one of these days. Well, today was the day. And I did really well — as in, I was careful and methodical and I didn’t injure myself in the process. I took breaks when I needed to, and I stopped completely, when I knew I was tired. Working with ax and maul, it’s important to be careful! I used to use a chainsaw, but I kind of screwed it up when I ran it without oiling the chain. One of those cognitive deficit things, I guess. I haven’t used a chain saw in a couple of years. I figure, it’s just not worth it, to run the risk of doing some real damage to myself — which is entirely possible, given a motor and a rotating chain and my sudden distractability streak.

After the wood was split and stacked, I ate a little snack and took a shower and then made supper. Now I’m suitably tuckered out, aching and burning and sore from head to toe — but in a good way. I’m going to bed early, to celebrate.

It’s the little things, y’know?

New tbi screening tool

If you’re anything like me, you have some difficulties communicating with doctors (tho’ I’m sure a TBI isn’t required for that! 😉 and the consequences of not being able to communicate may be substantial. As in, misdiagnosis that can lead to years of pain and anxiety (been there!)… dismissal of issues that cause you serious issues, because you can’t convey your experience to the doc (been there too!)… and potentially either a long wait for the right kind of help, or no help at all — which means not waiting around for the doctor to figure things out well enough to be able to help.

I’m always on the look-out for tools that can help me communicate with the world around me, in particular, doctors and other professional caregivers or healthcare providers can understand.  I’m always looking for better ways to put my situation in words that they can relate to.

Now, it appears there’s a new tool — from an official agency — that may be of use to people like me/us.

Over at, you can download the HELPS Brain Injury Screening Tool from the Pennsylvania Department of Health

It is a fairly brief screening tool that asks the following questions:

H – Have you ever Hit your Head or been Hit on the Head?
E – Were you ever seen in the Emergency room, hospital, or by a doctor because of an injury to your head?
L – Did you ever Lose consciousness or experience a period of being dazed and confused because of an injury to your head?
P – Do you experience any of these Problems in your daily life since you hit your head?
S – Any significant Sicknesses (that pre-dated your complaints)

While I don’t answer YES to each question — I never went to the Emergency room or was seen by a doctor (at the time of injury) — I answer enough of a YES to the majority, to get onto someone’s radar — which is what has happened with me… thank heavens!

I’m listening… but I didn’t hear you…

Here’s a common problem I’ve got – and yes, it’s a problem, not an “issue” or a “challenge”.

I’ll be doing something, like writing a blog post or reading something, and someone will ask or say something to me that I’m supposed to respond to.

I’ll say “Yes,” or “Okay,” or something else that indicates that I’ve heard and understood, but I’ll realize a split-second later that I have no clue what they just said to me. And I don’t have the faintest idea what I’ve just agreed to.

This is a problem. It happens all the time when I’m asked to do a chore, take out the trash, feed the pets, or carry something to another part of the house. I will respond as though I heard and understood and agreed and will do this thing. But I won’t have a clue what just happened.

And then I get in trouble, because either:

  • I’ll ask a few minutes later what I was supposed to be doing, which makes it look like I wasn’t paying proper attention to the person talking to me, or
  • I’ll forget what I was supposed to be doing, and it won’t get done, which gets me in hot water

If I can explain to the person talking to me that I’m having trouble processing what they’re saying to me, then that can help. But I don’t always have the time to do that. And sometimes by the time I figure out that I’m lost, I’m in hot water.

I spend a lot of time being in hot water. Especially at home.

At work, this happens periodically, but I can usually cover it up, because I understand my job so well that I can usually figure out ahead of time what I’m supposed to be doing, and then I’ll do it on my own time. Or I can “push back” on the people who are all over me to do something, saying that I need to do it properly, and quit pressuring me, already.

From what I’ve observed, this is what happens when I “lag” with my processing

  1. Someone says something to me
  2. I sorta kinda register that someone is talking to me
  3. After a few seconds, my brain kicks in and starts paying attention
  4. I realize that I’m not paying close enough attention, and I start really tuning in
  5. I realize that the person who is talking to me has said a bunch of things that didn’t register, so I start “rewinding” what just happened to see what I missed
  6. I get a lot of visuals about what I’m being told — different pictures flash through my head, some of them fit what I’m being told, others don’t fit at all — and I try to figure out the context of what’s being said to me… this all happens in split seconds, and it’s usually accompanied by a fair amount of anxiety, because I’ve gotten in so much trouble for getting things turned around, ever since I was a little kid, and I don’t want to get in trouble again!
  7. While I’m rewinding and replaying what happened before, this person is still talking to me, telling me more things I should be paying attention to, but my attention is divided between present and past
  8. Best case scenario: the directive is short and simple and familiar to me… Worst case scenario: what I’m being told is something new to me that I’m not following very well, I don’t have a context for it, and I’m getting all turned around
  9. If I’m lucky, the person talking to me finishes up and believes I understand what’s expected of me. If I’m not at all lucky, I am completely turned around and need to ask for help understanding, I don’t say things the right way, and the person talking to me gets really pissed off at me… starts to yell at me for not paying attention, and tells me I’m pathetic or an idiot or something like that

It’s not that I wasn’t listening. I just didn’t hear them.

Between the ringing in my ears and the many, many ways my senses are working overtime… and the way my brain is working overtime trying to make sense of it all, it takes me a little while to switch gears and get a clue that someone is trying to communicate with me. It’s not that i don’t want to listen — it just takes me a little longer to do it.

I wish the communication process were simpler with me. I think I may start asking people close to me to give me a heads-up that they’re going to say something to me… like I’ve done with deaf folks I’ve known, who have wanted me to stomp my feet on the floor or do something else to let them know that I’m about to engage with them.

Well, there are lots of areas for improvement, and I’m figuring out more every day. It’s a process, really. Something that just develops over time. And if I just don’t give up and keep going and keep trying and keep working at it, someway, somehow, I do manage to get it all sorted.

I am listening… and eventually I will hear you.

TBI Benefit #27 – An increased refund from the IRS

I got a surprising letter today – actually it came yesterday, but I was napping and resting most of the day, so someone in my household brought the mail in, opened it up, and left it for me on the kitchen counter. Lo and behold, the refund I’d calculated for my 2007 taxes (I filed for an extension and did an estimate, which was conservative — I took all the deductions I could legally take, according to TurboTax, and along the way, when I found some other deductions I was pretty sure I could take, but wasn’t 100% certain, I just didn’t include them. Now the IRS is telling me that they owe me a bigger refund — probably by a couple hundred dollars, since I don’t have my tax returns in front of me.

You don’t hear that every day!

My strategy of claiming less deductions than I suspected I was owed paid off… for now. I actually found some other earnings that I’d completely missed when I filed my estimated taxes, so my refund may actually be lower, but the habit of being more conservative and less hasty worked out for me. Playing it safe, with the understanding that I could be completely wrong in my math, soothes me and gives me something to fall back on. In any case, my thinking about things tends to get fuzzy and I tend to lose my train of thought, so I don’t dwell too intensely on tax anxiety.

I guess my attitude towards taxes is very different from most folks’ — I believe in paying them and paying my fair share. Yes, there are a lot of places my tax monies go that I don’t agree with, but all in all, the tax burden here is far less than in many European countries, PLUS I get a whole lot more freedom here, than anywhere else, so I figure it all evens out. I pay my way. TBI or no, I pay my way.

I like my roads paved and plowed. I like having elected officials. I like the fact that children of poor people have access to milk and cheese and other WIC resources. I’m not one to judge others for “gaming the system” — too many people do it in too many ways for me to get started on that, and it just confuses me. Our governmental system, say what you will, makes it possible for us to live in an amazing country that people are literally dying to get into.

Yes, I pay my taxes.

Paying taxes for me, is actually an important symbolic thing. Sure, I slip up sometimes and have to file for extensions. And sometimes I’ve messed up and even missed the extension deadline. But I do pay up, because being able to participate and contribute to this country is not something I take for granted. I’m a very different person from most folks, and my abilities are varied and my disabilities are often hidden, so the times when I can participate as a “normal” person… pitch in and help out… do my fair share… help make a difference, in however small a way… well, I take that opportunity.

I think a lot of “neurotypical” people take things for granted that mean so much to so many of us who are on the margins — by chance, trick of fate, or horrible accident. I think people tend to take for granted the ability to go out and get a job, the ability to participate in casual conversations, the ability to meet other people and be active in their communities. I think that a lot of regular people just assume that things are done a certain way — you get up in the morning, shower, dress, go off to work, put in your hours, then come home, pay some bills, watch some television, and go to bed… and do it all again, the next day. On the weekends, there are sports games and activities… movies and get-togethers… travel and leisure pastimes that many, many other people are doing… take the boat out on the lake… go skiing or surfing or skateboarding or sailing or hiking or play a ballgame of some kind.

But for someone like me with a history of tbi’s, none of those things are foregone conclusions, and they rarely go as smoothly as regular think they do (or should).

Getting up in the morning can be a challenge, as I’m rarely fully rested, and I tend to wake up either too early (most of the time), or too late. Showering can be a complicated thing, as I often can’t keep track if I’ve soaped up and rinsed off, shampooed my hair, or how long I’ve been under the water. And my lightheadedness and vertigo can make just standing in the shower a really nerve-wracking exercise.

Dressing for work can set me off, because I tend to forget what I’ve worn earlier in the week, and unless I have my clothing all lined up in chronological order, I can easily end up wearing the same thing twice in two days. Plus, if I’m really out of it, with vertigo or sensory issues, I can walk around for most of the morning with my shirt buttoned all wrong or my fly open. (I once went through a whole animated job interview, standing at a whiteboard, sketching out possible solutions to problems posed to me… with my fly open… which is NOT the kind of impression I wanted to make! I still got the job, but jeez, how embarrassing!)

Going to work has its own share of hazards, as bright sunlight is hard for me to handle, and even with sunglasses on, the shifting contrasts of light and shadows play tricks on my eyes. And when I’m tired, there’s always the hazard of road rage… or misjudging a situation. One morning, not long ago, when I was tired and angry while driving to work, I almost ran in to someone who wasn’t obeying the right-of-way rules — just because I refused (on principle) to budge. They were driving right into my path, but I had the right of way, so I motored on like a bull-headed idiot, and I almost got hit — just because “I was in the right” and they weren’t following the rules. On principle, I was correct and I had every right to drive through. But principle won’t pay for car repairs, and I only have one car I can reliably drive to work, so “standing my ground” was a really dumb thing to do. Plus, thinking back, if they had hit me, considering the place that I was in, that morning, I probably would have gotten in a fist fight with them, and I might very well have been arrested.  I was in a really bad place, and I consider myself (and the other person) to have been literally spared by divine grace. If it were up to me, I would have landed in really hot water!

At work, depending on my state of mind and body, I can either have good days or bad days. But it often takes a lot of effort for me to function at a “normal” level. Nobody I work with knows I’ve had TBI’s, and I’m not about to tell them. I hold my own and I do my piece, but it’s a real chore sometimes, just to get going. I have massive issues with initiating, with concentrating, with following through. I have huge interpersonal issues that I do a pretty good job of keeping quiet about — things like rage and hostility and anger and mood swings. On the surface, I try to stay impassive, but under the surface, it’s often a seething swirl of confusion and mixed emotions that are as high as they are varied.

Heading home in the evening, after a long day, I just try to listen to the radio and keep chilled out. I have to work harder at paying attention to traffic when I’m headed home, so that keeps my mind off interpersonal aggressions and whatnot.

At home in the evenings, I’m just so wiped out, so often, I can’t even look at anything that needs to be handled. I’m so exhausted… it’s all I can do, to eat supper and flop down in front of a movie. Now and then, I’ll manage to do things I’m supposed to do, but they often get pushed off till the weekends.

I have to say, in th past, I tended to just push through and not give myself a break and just ignore the fact that I was exhausted all the time. I didn’t pay any attention to myself, and I didn’t take care of myself. I didn’t like the fact that I was tired all the time, so I refused to admit it, and I just pushed through with doing whatever I felt needed to be done.

That was fine for my productivity, but the net result was that I was an impossible person to live with. I was unresponsive, most of the time, moody and volatile to the people closest to me, non-communicative and prone to temper outbursts and meltdowns, and the kind of person whose intense volatility made everyone around me walk on eggshells all day. Yes, I appeared to be productive. Yes, I was getting things done. But I was just a machine — a shell of a person whose only solace was that I was making good money and keeping up appearances. Inside, though, I was wracked with pain and sorrow and exhaustion and hurt and anger and rage and confusion.

Now, I think know I’m much better off. I’m less “productive,” and it takes me forever to get things done or process ideas and conversation, but I’m now communicating with the people who live with me far more than I did in decades… I’m now sleeping more and taking care of myself better than I ever did… and I’m actually aware of what’s going on around me, which is more than I can say for the person I was, just three years ago.

Weekends… well, I won’t even go into them. Mine are very low-key, for the most part, and I do so poorly with crowds and frenetic activity, most popular activities (like the ones I mentioned above) do NOT appeal to me. I spend most of my time gearing up to do basic things – like take the trash to the dump or go food shopping or go to the library or clean something. I spend a lot of time spacing out and not doing much of anything. And by the time Sunday night comes around, I often feel pretty deficient about not having gotten much done.

Daily life for someone with a TBI is often far from simple, and it’s often anything but straightforward. Sometimes it takes a monumental effort, to just approximate “normal.” I accept that as part of my life… just something I need to deal with… and I try not to dwell on it too much, lest it demoralize me and hold me back.

Given all the “normal” things that tend to be so complicated and difficult for me, if there’s something relatively simple and straightforward I can do to participate and contribute to the common good — like pay taxes — I’ll gladly do it.

It’s a small price to pay to be part of something as amazing as the United States of America.

Watching Kung Fu Movies and Wondering…

One of my favorite things to do as a teenager, was watch Kung Fu movies on rainy Saturday afternoons. I had an active childhood, so if the weather was nice, I was usually outside. But on rainy days, the next best thing to be running around raising hell, was watching other people do it — and with poorly synchronized dubbing.

I just loved those movies, and I watched another one last night.. while eating Chinese take-out, which was perfect.

Now, it’s Saturday afternoon, and I’m hankering for watching more.

And thinking back to the movie last night, I remember noticing how very many times people in the movie got hit on the head, smacked in the face, pounded and knocked around. They all got back up immediately, of course, and went right back into the fray. And their characters never seemed to show any sign of diminshed capacity after their rigorously violent battles.

I enjoyed the movie, but I found myself cringing a lot while I watched. Knowing what I know about brain injuries and how even a minor impact can cause larger problems on down the line (which is a lot more than I knew when I was a kid), I have to wonder if it’s really such a good idea to consider that sort of thing “entertainment”.

Still, I must admit that I really do enjoy watching the fighting. The choreography. The physical prowess. The warriorship. It’s very cool. And I have to wonder, at the same time, if head trauma isn’t actually just a part of the human experience that we somehow have forgotten how to accommodate or heal in our modern society.

When I think back about the past 10,000 years of human history, I come across a lot of warfare and conflict… burning and pillaging and pitched battles… invasions and conflicts… many of them hand-to-hand, not conducted at a distance with computers and remote controls. If you think about it, human history is full of head trauma, from the injuries sustained just by working jobs of hard labor — as in, most work that was done, until about 50 years ago, when so many of us migrated to inside work — but from fighting and falls and accidents and warfare that just kept coming in waves and waves of invaders.

Truly, human history has been fraught with head injuries, and the complications therefrom have probably  had a greater impact on our species’ experience than we realize.

That being said, I have to believe that head injuries are meant to be survived. If they weren’t, we’d probably all be dead — or would have never been born.

I mean, think about it — how many soldiers have come back from how many wars, with headaches and cognitive issues and mood disorders and PTSD, and still got re-integrated into society? I can think of a lot of WWII and Korean War veterans who did. In fact, I suspect that the elder generation of soldiers had a far higher incidence of head injury than they let on. But because of their cultural training and expectations, they didn’t let on. I’ve known WWII veterans who — upon close scrutiny — had the hallmarks of TBI. And yet, they participated in society, married, raised kids, had careers…

And how many children throughout history were beaten by other kids or adults, or had falls or accidents… sustained head injuries, went on to lead regular lives? Lots and lots, I believe.

Like the fighters who were on my t.v. screen last night, I’m quite sure that many, many people throughout history have had head injuries, but continued on in spite of them. Some may have fared better than others — I’m sure of it. But they fared. Hit on the head or not, they fared.

And so do I.

But still, I don’t go looking for a fight.

And I can’t help but cringe, when someone lands a hard punch and knocks someone out.

Impulse Control 101

In the past months, I’ve noticed a pattern of behavior that I never really thought about before –my tendency to check out library books en masse when I’m getting over-tired, fatigued, and overwhelmed.

I also tend to start projects, just because they seem interesting to me in the moment and they get my  mind off my troubles… not because I actually plan to follow through and complete them.

I first noticed this for real, in February of this year. From my self-assessment form I filled on on February 6, 2008, I wrote:

I’m drawn to library books, and impulsively check them out, loading up on lots of them. I also impulsively start on a lot of research projects and other projects.

The intensity of my desire to check out lots of library books or start projects was about 3/10 that day, and the impact of it was 7/10, because while the intensity wasn’t that great, it still was very disruptive to my regular life.

From my sheet:

I went to the library today, but I just looked through some of them, rather than checking them out. I returned a book I wasn’t reading. I also sat down and looked at what projects I can realistically complete, and which ones are just interesting/compelling to me at this time.

I managed to get rid of a book, rather than bringing in more.

Now, it might not seem like a huge deal, but this was a big revelation for me. Here, all this time, I had been thinking that I was studying and doing things that would ultimately bear fruit and enrich my life, but it was really just to distract myself and soothe my intense emotions that were coming up because I was fatigued, and I was too tired to realized that I was fatigued.

This is one of the issues of self-awareness that I often face — I won’t realize till later that what I’m doing is not really productive, and I’m actually doing it for a very different reason than what I tell myself.

Discovering this has, since last February, made it possible for me to not only identify the things that I am really interested in doing, because they are important, but also to pace myself and not drive myself so frantically, just because I’m fatigued, and I don’t know it.

Well, as long as no one is getting hurt, checking out library books isn’t the worst way to deal with my stress. But a long nap would be more constructive.

Speaking of which, I am tired. Time for my nap.

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