Yes, I do have problems with getting mired in details…

From March, 2009 – I may have never actually published this…

I’ve been meaning to finish up my writing on “A Perilous Relief“, which is about how I use stress to relieve certain kinds of distress in my life, and how that works against me.

But then I got caught up in thinking about how TBI and PTSD intersect and feed each other. And then I got caught up in thinking about Tetris and how it might help relieve PTSD flashbacks. And then I got caught up in thinking about Natasha Richardson. And then I got caught up in thinking about my job situation. And then…

All of these are very interesting things to think about, and some of them (like job stuff) are quite valuable, if not essential. But in the process of researching the different pieces of these puzzles, I went down a bunch of rabbit holes.

What’s been keeping me busy for the past weeks and months

And the paths that used to be pretty straightforward and simple, have now gotten tangled and twisty and have intersected with other paths, so I’ve been wandering around this veritable “rabbit warren” of interests and — let’s face it — distractions.

It’s all very important to me, of course, but these different ideas have been competing for time and attention, and there’s really only so much I can do in any given day. I need to keep my household running, I need to do my taxes, I need to keep current at work, and I need to make sure I’m getting enough sleep each night and I’m eating well.

I need to square away some very basic needs which are not nearly as dramatic and entertaining as exploring my MRI in 3D, but which are essential to my daily functioning. And those things are getting lost in the shuffle. Kind of like “A Perilous Relief” has gotten back-burnered numerous times, since I started working on it a few months back. I know I need to mind my sleeping patterns. I know I need to take my vitamins regularly. I know I need to cut out munching on junk food at 3 p.m. each day (it’s making my tongue break out, in addition to making me feel bad generally). I know I need to help with cooking and cleaning and shopping and yard work. But I get so caught up in other things that I overlook them and don’t tend to them. And things start to fall apart around me.

Which isn’t so bad, when you’re cognitively fully-abled. But when you’ve got cognitive deficits and you’re susceptible to paralyzing anxiety and overwhelm, something as simple as a messy desk can throw off your entire day. And not being able to find papers I need in the construction disaster area of my office sends me into a tailspin that triggers my hot temper and makes me miserable to live with.

I really do need to tend to the basics. But I hate having to tend to the basics. I’ve never been good at it, and I feel it’s terribly unfair of the universe to force me to pay attention to that kind of stuff. For most of my life, I’ve been able to function well in the midst of mess and chaos. No more. Not in the past few years, since my fall in 2004.

I think this is probably the most frustrating part of TBI — not being able to take for granted the things I always did before. Like sleeping through the night. Like keeping my cool in tough situations. Like remembering whether or not I shampooed my hair in the shower, five minutes ago. Like understanding and remembering what was just said to me. I have to expend so much friggin’ energy just keeping up with stuff that everybody else seems to have no problem with — and the everybody else assumes I can do just fine — that it gets depressing, and I lose interest in it pretty quickly. It’s tough to sustain invested interest in stuff that you keep getting wrong, over and over and over again, till you spend much of your time demoralized over the littlest things. There’s only so much failure at fundamentals I can take, before I back away from my problems and avoid them entirely.

So, I end up neglecting things I should take care of — like my sleep schedule. Like my temper. Like my personal hygiene. Like asking for clarification while I’m talking to someone about something important. Granted, I’m not an exhausted, explosive, unkept, smelly one-sided conversationalist. But I could go there all too easily, if I didn’t keep track of where I’m at… and if I didn’t realize that I have these (and many other) issues.

When I slow down long enough to examine my life, I can see plain as day that all is not 100% perfecto in my life. I have many areas where I need help, and I get that. Finally, I get that. Having my neuropsych evaluation turn up hard data about me being really distractable, having a hard time with sustained attention, being prone to missing important pieces of information that are said to me, and having a Swiss cheese working memory that drops information (literally) in the space of a few seconds, has brought it home, loud and clear, that I can’t do this all by myself.  I am in fact impaired. I need help, God help me.

So, I’m now starting to find folks to help me with those things. My neuropsychologist has started to help already. And my new therapist, who has a neuropsychological background, has already helped with some communication issues. I’m also getting to a point where I’ll reach out to a speech pathologist to help me with my verbal comprehension and processing. It’s all coming together. With the help of others.

But for now, I need to tend to basics… finish my breakfast, take my shower (and shampoo my hair), dress for work, and go earn my pay. It’s not the most exciting prospect in the world, but it’s all got to get done.

Normal MRI and EEG… or not?

One thing that has saved me from obsessing about my job situation is my neuropsychological fall-out from my TBIs. Not only did my partner finally (after more than six months) get to sit down with my neuropsych and start to ask questions from a qualified health care provider, but my copies of the MRI and EEG results/interpretations came from the hospital, and it appears that my tests were not 100% clear of all disruptions.

It’s been an exquisitely excruciating balance of good news and who-knows-what-kind-of news. And it has totally kept my mind off my job situation, which in my more vulnerable and fatigued moments just drives me ’round the bend. As much as I want to focus on my strengths and keep firm and steady, I still have a tremendous amount of insecurity around how my TBIs have affected me, work-wise, and I have deep-seated reservations about how well I’ll be able to perform, if I’ll be able to keep up, if I’ll be able to be the kind of team player I was before my fall down the stairs in 2004.

But things are moving along with regard to the neuropsychological exam, and good things are brewing there. That promise of improved coping abilities and good information made available in a way I/we can use it… as well as finding out I have a small pineal cyst, and learning that there was some rare theta slowing in one of my temporal lobes, have pretty much eclipsed my vocational concerns.

On an up note, my partner and I had a great session with my neuropsychologist last week. From the mouth of a professional, descriptions of my situation and my “challenges” sound a whole lot less scary, and my neuropsych had straightforward answers and suggestions, where I generally get turned around and agitated and even sometimes a bit combative when pressed for information. My partner got to ask the questions that have been burning in their mind for months and months, and they got total access to the doctor sitting across the desk from them. They got to see that my folder about my testing is 4-5 inches thick, and there are tons of tests I took, all of which rendered pertinent results. They got a real sense for how complex my situation is, and how good my doc is — how they really take their time and make sure they’re thorough and cover all the bases, which is a good thing.

I think it was a total relief for my partner, who was starting to think — I believe — that my neuropsych was lolly-gagging and taking their sweet old time. One other thing that was very beneficial was that the doctor had to take a call and talk someone through the steps of tracking down a loved one who was impaired, and keeping them from being a danger to themself. I’ve had appointments canceled and rescheduled with this doc numerous times, due to things like this, and my partner was thinking I was just being brushed off. When the phone call came in, they got to see the doctor in action and just having that experience really did a lot for their confidence in them.

I think my partner and I both have more good info to work with now, in regards to our marriage, and they can see that the problems I’m having are not necessarily due to my being deliberately stubborn and trying to yank their chain and ignore them. Yes, I can be difficult, but I’m a lot less deliberately problematic than my partner believes. I’ve been catching crap for years about being too inattentive, too oblivious, too lax, too lazy, too unmotivated, too absent-minded, too flighty… and now, at long last, I’m somewhat vindicated. They were told explicitly by the doc that I have trouble understanding spoken language in the moment, and it takes me longer to process information when someone is talking to me. All those times that I’ve gotten raked over the coals for not being responsive enough quickly enough can now be put behind us. We don’t have to do that anymore. And we can slow down. Something about having a doctor communicate the information I’ve been trying to convey over the past year is helping. I’m not going to question that. I’ll take it — it’s a gift.

On the other hand, my other doctor — the neurologist I saw in January and February — seems to have mucked things up a bit. I got a copy of the MRI and EEG analyses, and while they may read as “normal”, they are not without event. My MRI shows a small pineal cyst, and my EEG shows some theta slowing in one of my temporal lobes. In both cases, the anomalies are not great enough to warrant all-out alarm, but they are both something to keep an eye on.

In addition, the neuro wrote up notes from my visit and sent them to my PCP, and their description is not 100% accurate. They focused a great deal on the “rage” issues I’ve been having. I wouldn’t necessarily call them “rage” — just abrupt swings in emotion, in all directions. And they also mis-characterized my family history, making one of my relatives (who has had a lifetime of symptoms and experiences similar to my own, in some respects) look and sound like a rage-a-holic.

Oh        my        God…

Now I have to back-pedal and compose a letter to both my neuro and my PCP correcting the record. It sorta kinda freaks me out a bit. I’ve had so many unproductive relationships with doctors, I can’t even begin to say. Now, I finally managed to find someone I can work with and with whom I have established a decent rapport… only to have this neuro mis-characterize me and potentially undermine that relationship.  It’s bad enough that the neuro misunderstood me and is working off bad information. But now they’ve dragged my PCP into it, too. Ack.

So, my next steps are to communicate my situation in writing. I am going to:

1. Work through this with my new therapist, who is a neuropsychologist themself, and who knows about TBI and can help me think through my response. I need to correct the record very thoroughly in writing and compose a letter to that effect.
2. Send the letter to this neuro and my PCP.
3. Follow up with my PCP about what to do with all this new information. I may need to do damage control. I want to keep the lines of communication open with them and make sure I’m not digging myself yet another hole.
4. Probably find a new neuro. I really liked dealing with this one, for once, but they clearly were not present and were not dealing with what was in front of them. I’m not sure where they were, at the time we were talking… But no matter. They are so fired, and I’m off to find another neuro.
5. Check in with my new therapist a lot through the whole process, to make sure I’m not making things worse for myself. That would be all too easy to do, and I want to do things different this time.

What this experience has really taught me — and there are some vital, valuable lessons here — is that I really need to approach my health care with my TBIs in mind. The biggest problems I’ve been having with health care, throughout my life, have revolved around communication. I have never had an easy time of describing my symptoms to doctors, nor have I done a very good job at collecting and analyzing information from them. I can see now that I’ve had a truly terrible time understanding what doctors are saying to me, parsing through it all, and then retaining it to act on it later.

And because I’ve had such a terrible time — all the while looking (to the untrained eye) like I should be more “with it,” so what the hell was I being such a freaking space-case about? — and I’ve got a history of various trauma with plenty of PTSD to go along with it, I would get all revved and anxious and become either overly withdrawn or combative in this exaggerated fight-or-flight dynamic that probably every TBI/PTSD person knows all too intimately. And I would either come across as hostile and aggressive, or I would retreat into my shell and not speak up about what was going on with me.

Which never made for very good doctor-patient relations, I can tell you.

Now I need to take a different approach. Put the facts of my situation into writing. Take it slowly and deliberately and seek out help. Because at least that’s a way I can communicate with my doctors with 100% accuracy. And the next time I deal with any doctor, I’m going to summarize in writing my issues and give them to them — along with a note from my neuropsychologist that explains that no matter how bright I may look on the outside, no matter how extensive my vocabulary may be, no matter how conceptually “with it” I may be, my speed of processing is slower than one would expect, my ability to process spoken language in the moment is impaired, and my short-term memory is for shit. And I don’t mean to come across as hostile and argumentative — I just have a hard time dealing with my “asymmetrical” challenges.

The next thing I do  — after I correct the neuro’s info and send it to them and my PCP — is get a brief summary letter from my neuropsych explaining both the strengths I have and the limitations. I cannot see any more doctors until I have that in hand and I can give it to them in advance, so they can understand I am not malingering, I am not deliberately being difficult, I am not trying to make their lives more complicated, I’m not a malpractice risk, I just need help when it comes to communicating, and I’d appreciate it if they wouldn’t jump to conclusions about me, just ’cause I fell down and got hit on the head a lot over the course of my eventful life.

I am so done with dealing with doctors who don’t have all the information and can’t use their heads to observe what’s right in front of them. Maybe that’s not how medical professionals do things, but God gave them two eyes,  two ears, a nose, and a mouth, and it seems to have worked well for millennia, so why not avail oneself of one’s native abilities?

I’m also fed up with not being able to “read” what they are trying to communicate, and being held back by my broken brain’s penchant for meaningless detail. I’m tired of struggling with something I “shouldn’t” have problems with, getting lost… and not realizing I’m lost till several hours after I leave the doctor’s office.

I’m sick and tired of this whole hidden disability trip, all the ignorance, all the half-assed information, all the bias, all the cluelessness… and how the lowest common denominators seem to drive the situation. I’m tired of having to navigate the seas of truly debilitating difficulties, without anyone else realizing they’re a problem for me — and giving me shit because they are.

I am also fed up with doctors who don’t take time with me. I need to figure something out. I had considered double-booking appointments with my doctor — reserving twice as much time with them, so I don’t feel as rushed and I can ask all the questions I need to ask at a speed I can actually sustain. Either that, or I’ll get an “interpreter” to go with me and help me understand what the doctor is saying to me — and who can help me get them to slow down and stop rushing me. I think that having another person in the room with me to help me sort things out may be the way to go.

Honestly, does my health need to suffer, just ’cause someone doesn’t want to slow down? The rest of the world may think so, but I don’t. I’m just not going there. Something’s broken. And I’ve got to fix it.

Learning as pain/stress relief

I’ve been giving a lot of thought to the article I read the other day about how the ‘Thirst For Knowledge’ may be a kind of opioid craving… thinking about how that has held true in my own life.

I have to say, it really rings true for me. And I while I was having dinner with a friend the other night, they were telling me how they’ve always loved to learn. They’ve just eaten up new information and they’ve always gotten a charge out of taking in new information and putting it to good use in their life.

Interestingly, they also have a lot of problems with chronic pain — low back pain, especially. The pain pretty much derailed their life for many years, keeping them from getting decent sleep, and probably taking a few years off their life. They are in their 50’s, but they look like they’re 10 years older. It could be that their biological age — due to their chronic pain problems — is just that.

I never would have guessed that they’ve got this pain thing, which they only started really talking about with me recently. They’re one of those people who seeks out all sorts of new and novel information, and they seem to have a genuine thirst for living large, when it comes to heady stuff. Sure, they have other issues, and when they get pissy, they’re no walk in the park, but the way I’ve always seen them, is more as a hungry mind than an aching body.

It’s funny — I rarely discuss my own pain with other people, too. I don’t really get into it — there doesn’t seem to be much point. It’s just depressing, to go into the details about how my shoulders and elbows and hips and knees and back are all on fire, screaming with pain, keeping me up at night, waking me up early… and there’s precious little I can do about it. Even ibuprofin (which is the only anti-inflammatory, including prescription NSAIDs that I’ve used in the past) doesn’t always help. So, I just have to tough it out.

In fact, I rarely devote much time to thinking about my pain when it’s around. It’s just always there. In the background. Nudging me, every now and then, when I step out of line. Twinging or stabbing or whatever. Headaches. Neck aches. Back aches. Joint aches. It never entirely goes away, and I try not to dwell on it, when it comes up. Very little seems to fix it, other than scaling back on my activities and trying to get more rest and steering clear of foods that I know don’t sit well with me.

Now, when I do think about it, it just makes matters worse. I start to notice it. I start to get bothered by it. I start to get crazed and anxious and frustrated and beside myself. It’s a little like being stalked — it’s always there, lurking in the background. Not directly assaulting me so violently that I cannot function, but always reminding me that it just might step up at any time and do just that. And that drives me nuts. Feeling like I cannot escape this shadow, this constant reminder, this ever-present phenomenon that refuses to respond to medication or management techniques or even diagnosis… As Charlie Brown would say, Aaaaaaaauuuuuggggghhhhh!

One of the reasons I realize I haven’t been doing my self-assessments lately is because there are a bunch of places where I track my pain.  And when I do the entire sheet and include my pain(s) in the assessment — rating its severity and impact on my life from 1-10, describing it and its impact, detailing what I am doing about it, and recording whether that worked or not — well, I can see how poorly my coping mechanisms work. And I get depressed. Really down. Just despondent.

So, I don’t self-assess. Which tells me that I need to come up with a different self-assessment approach — probably break out the different areas into separate pieces, and only focus on one type of issue at a time — the cognitive OR the behavioral OR the emotional OR the physical — not lump them all together in one place, which gets overwhelming.

But when I don’t self-assess, I get into trouble with my thinking and my behavior and my attitude. So I need to do something about this. Soon. Today, in fact.

And so, I shall.

But back to my main topic, which is about learning as a pain/stress reliever… No matter how badly my pain is, no matter how much stress I’m under, I find that learning things provides an almost other-worldly relief for me. I’ve been going through some very heavy job stuff, lately — in this economy, talk about stress — and I’ve sorely needed a break from all the intensity. I don’t want to lose my house. I don’t want to be out of work. I don’t want my health to go spiraling downhill, because I’ve taken on more than my body and mind can handle, and it all gets to me and sends me over the edge. Times like this, my PTSD and TBIs rear their ugly heads, and my thinking gets foggy, my reactions get “dumb”, and my whole system starts to go haywire. Which is about the last thing I need, when my home and my family and my future are on the line.

I need some serious stress relief, but I’ve been having a lot of trouble with being outside in the open — lots of anxiety comes up, and I start to freak out with the bombardment of all the stimuli, especially sounds, as my hearing has been hypersensitive to a point that’s starting to drive me nuts. So, I have to find something to do inside that not only takes my mind off my physical discomfort, but also provides serious relief.

That relief comes from learning. Learning new things I need to know for my job. Learning new things from the world wide web. Learning new things from friends. Learning new things from books and white papers. Learning new things that may not be all that practical, but really interest me and keep me engaged. Focusing my attention on things that fascinate me and that enlarge my store of available knowledge does something amazing for me… it cuts the pain. It not only takes my attention off it, but it seems to physically ease my suffering.

And that’s huge.

So, I’m learning everything I can, these days, about things that interest me. And I’m also learning how to pass what I learn along to other people. I come from a family of teachers — professors, elementary school teachers, Sunday school teachers, tutors, instructors. I also worked my way through what college I could manage to complete by tutoring folks in subjects that interested me. And I did a good job. I would probably be a teacher now, if I could have finished college, but that wasn’t in the cards. But I can do it now, in my own way, without the limitations of administrative types who are looking over my shoulder, breathing down my neck, saying, “You can’t say that to those kids!”

Online, in this blog, I can share and teach and instruct. And I’m figuring out new ways of getting information across. It’s my hope that I can do a better job of communicating the stuff that’s in my head to folks who can use it. ‘Cuz I’ve spent an awful lot of time figuring out how to be highly functional and “normal” as normal can be, despite a history of head trauma, chronic debilitating pain, not to mention considerable sensory issues that — when they’re at their worst — turn me into an automaton of sorts.

The information and experience has been invaluable to me, in just living my life. And others might find it useful, too. If I can use what I’ve learned to ease others’ pain — through the process of learning, as well as the experience of using what I relate — then my own difficulties have all been worth it.

TBI and PTSD – The chicken or the egg?

I’ve been giving a lot of thought, lately, to how TBI and PTSD interconnect and “feed into” each other. In my experience, the two are closely interconnected, and they can make each other pretty confusing and convoluted. Each condition changes the brain in subtle but important ways, and when the two interact in one brain/body/mind/spirit, the compounded difficulties can be exponentially more difficult to identify — and treat.

Traumatic brain injury is by its very nature traumatic, and post-traumatic stress disorder comes out of trauma. So, when you fall and hit your head, or you are in a car accident, or you are attacked and knocked out, trauma happens to the body. The body is threatened – sometimes mortally – and the brain kicks in with all sorts of great hormonal and biochemical survival mechanisms. Adrenaline gets pumping. Endorphines start flowing. Glucose gets delivered to muscles. And the less-survival-based reactions we have get pushed off to the side, so our bodies can focus on one thing: survival.

Even if we are not consciously aware that we are in danger — like when I fell down the stairs in 2004, and I didn’t fully realize the extent to which my physical safety had been threatened — our bodies are aware that they are under attack, and they respond accordingly. It’s not something we can control, it’s not something we should control. We need our brains to be able to care for our bodies without our minds knowing how to do it. The problems start, when our brains don’t realize that we’re out of danger, and/or we get caught in a constant feedback loop of detecting perceived danger, reacting to it, stressing out, and never getting a chance to settle down.

That settling down piece is very important. After our sympathetic nervous systems have risen to the challenge(s) of a perceived threat, our parasympathetic nervous systems need to kick in and help our bodies chill out. Rest. Restore. Relax. Digest… Take a break and get back to balance. But if we never take a break and get our nervous systems to relax and get back to normal, we can get stuck in a constant roller-coaster of fear/anxiety/stress/hyper-reactivity that just won’t quit. And traumatic stress eventually turns into post-traumatic stress disorder. Not fun for anyone.

One of the big ways I think TBI contributes to the development of PTSD is in the “debriefing” phase after a crisis or trauma. TBI can impair a person’s ability to self-assess — sometimes we literally don’t know that something is wrong with how we’re experiencing/reacting to life. It can be harder to detect physical experiences and decode behavioral problems, not to mention cognitive ones. And that diminished ability to self-assess makes it more difficult to self-regulate… to consciously and deliberately change your behavior and actions so that you can “power down” and let your over-taxed body restore itself.

At least in my case, when I went through traumatic experiences — let’s take one of my auto accidents as an example — I wasn’t able to think things through after the fact and assess how I was feeling. I literally didn’t know that I was having trouble understanding what people around me were saying. I thought it was them, who were suddenly refusing to speak intelligibly. I literally did not realize that my sleeping schedule was off — I just stayed up later and got up earlier and pushed myself to go-go-go… and then drank and drank and drank to get myself to relax. I wasn’t even able to determine how I was feeling physically. All I knew was, something was up with me, and it really made me feel awful.

So, I pushed myself even more to “keep up”… and it just added to my already overtaxed body being stretched beyond its means. Not good.

A few posts back, I wrote about being wired to survive and all the biochemical activities that take place as a result of some traumatic crisis. The thing to remember about that wiring system is that it is totally independent of rational thought… but rational thought is necessary to deal with its aftermath. The physical experience of all that adrenaline and endorphins and glucose is not a walk in the park. Our bodies need our brains to take over, after we have rushed to safety, to tend to our frazzled nerves and make choices that allow us to relax, regroup, recuperate, and restore the delicate balance in our central nervous systems.

But with TBI, even mild ones, the brain is impaired and it cannot process clearly. So, we can end up making choices that do not help us relax, that keep us on edge, that keep us going-going-going, so we never really get a break from the crisis and drama.

And post-traumatic stress disorders emerge, which further alter our brain chemistry and how we make choices and take action in our world. PTSD actually alters our cognitive functioning. It makes us think differently than we would, under normal, non-stressful conditions. And that different thinking is not always the smartest thinking.

But wait, there’s more…

Impairments to our thinking — our heightened hyper-reactivity, our hair-trigger response systems that are fried and frazzled — can cause us to make choices that are dangerous and risky. Choices that can cause further head injuries. Being all PTSD’ed-out can make us very quick to anger, in situations where we’re likely to get in a fist-fight, even if our opponent is twice our size. It can make us “slow on the uptake” so we miscalculate choices while we’re driving. It can cloud our judgment about whether or not to take up skydiving. And our increased appetite for stimulation can cause us to pursue activities that are custom-made for yet more traumatic brain injury.

And so, we end up with a vicious cycle of traumatic head injury feeding our post-traumatic stress, which evolves into disorders of mind, body, heart, and spirit… and leave us wondering why the hell everything around us is going to shit. Our brains have been injured, and our judgment is impaired. And each condition feeds the other.

I’m not sure how much research has been done on the interactions of TBI and PTSD. I think it’s a topic that’s ripe for harvesting, and we could probably learn a lot from taking a close look at the two pieces of the puzzle. I think that folks being treated for PTSD should also be evaluated for TBI, and vice versa. Having experts and folks in positions of authority say that “most TBI suvivors heal” sends the message that the brain will just take care of itself, and everything will be fine. But while the brain is healing — to whatever extent that may be — post-traumatic stress can emerge, which can feed a vicious downward spiralling cycle that affects not only the mind, but the spirit and the body as well.

And that needs to be addressed.

And I do more of that here…

Playing Past PTSD – Using Tetris to Relieve Trauma

A little while back, I came across mention that playing the game Tetris can help relieve — or even prevent — post-traumatic stress disorder (esp. flashbacks), if it’s played immediately after a traumatic event.

Can Playing the Computer Game “Tetris” Reduce the Build-Up of Flashbacks for Trauma? A Proposal from Cognitive Science by Emily A. Holmes*, Ella L. James, Thomas Coode-Bate, Catherine Deeprose from the Department of Psychiatry, University of Oxford, Oxford, United Kingdom published a paper you can read here. The abstract is below.

Abstract
Background

Flashbacks are the hallmark symptom of Posttraumatic Stress Disorder (PTSD). Although we have successful treatments for full-blown PTSD, early interventions are lacking. We propose the utility of developing a ‘cognitive vaccine’ to prevent PTSD flashback development following exposure to trauma. Our theory is based on two key findings: 1) Cognitive science suggests that the brain has selective resources with limited capacity; 2) The neurobiology of memory suggests a 6-hr window to disrupt memory consolidation. The rationale for a ‘cognitive vaccine’ approach is as follows: Trauma flashbacks are sensory-perceptual, visuospatial mental images. Visuospatial cognitive tasks selectively compete for resources required to generate mental images. Thus, a visuospatial computer game (e.g. “Tetris”) will interfere with flashbacks. Visuospatial tasks post-trauma, performed within the time window for memory consolidation, will reduce subsequent flashbacks. We predicted that playing “Tetris” half an hour after viewing trauma would reduce flashback frequency over 1-week.

Now, it’s been a while since I had a really traumatic experience — tho’ the winter storms we had last December did leave their mark. But I thought I’d just see if I could find Tetris online, and I did — JS Tetris 1.17

It will run in your regular browser using javascript, and you don’t need to download anything different or special to run it.

I like this game because it has vertical lines that help me line up the pieces that are “falling”. The pieces are brightly colored. And the controls are on the arrows on my keyboard, not the numbers, which tends to get me turned around. Also, I can restart the game anytime without it complaining at me. Some games make me feel pretty inadequate when I stop them before I finish. Or they try to upsell me and get me to purchase a “full” version. No thanks. I just want to start from scratch.

I don’t know if Tetris does any good in the long-term, but I know after spending a little time playing this a.m., I’m feeling a little more focused.  And after mucking up about seven different tries at filling up the bottom row, I’m ready to do something useful and productive with my time. So, playing Tetris poorly — in its own way — helps me get past my issues, t0o 😉

Something for everyone.

It’s Brain Injury Awareness Month 2009

Did you know March is Brain Injury Awareness Month? It is and each March the Brain Injury Association of America (BIAA) and the BIA chartered state affiliates throughout the United States partner together with other organizations, businesses, schools, survivors and their families and others to generate awareness and understanding of brain injury. This year’s focus is dedicated to Sports & Concussions, specifically youth sports.

According to the Centers for Disease Control and Prevention (CDC) an estimated 1.6-3.8 million sports and recreation related concussions occur in the U.S. each year. Concussions occur even if an athlete doesn’t lose consciousness and in fact, is the most common type of brain injury sustained in sports.

A concussion is a type of traumatic brain injury (TBI) caused by a blow or jolt to the head. The severity of an injury can range from mild to severe. Signs and symptoms may be noticeable immediately, or it may take days or weeks before they are present.

Symptoms and recovery vary for each person, but awareness and seeking medical attention immediately following an incident are crucial steps in caring for yourself, a teammate, or family member.

Read more about this critical issue at the Brain Injury Association of America’s website. They have lots of great information and educational materials.

I only wish I’d had this information when I was in high school. It might have made a difference in how I handled my own concussions — not to mention my extracurricular activities.

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My Phantom Brain

Last night I was sitting up, writing in my journal about (bad) experiences I’ve had in the past that I can directly trace to complications from my TBIs. It actually does give me a great sense of relief to know that it was my brain, not my “defective character” that had such a large hand in many of the troublesome spots I got into. I had a nasty habit of falling in with ne’er-do-wells in high school and college, and I put myself in serious danger a bunch of times, because I misjudged social situations that were tailor-made to totally screw me up. My delayed information processing kept me from making on-the-spot good decisions, and my problems with attention seriously impacted the quality of information I was working with.

But knowing that TBI-related cognitive issues had a large hand in what was up with me only goes so far in comforting me. In some cases, although I may have escaped bodily harm, I’m still dealing with the scars of social “transactions” gone wrong.

Yes, I escaped being pounded to a pulp by thugs in school… But I didn’t escape being viciously bullied during elementary school, in both 5th and 7th grades, and I still have a lot of social anxiety that I have to consciously battle on a regular basis.

Yes, I escaped being waylaid and robbed by thugs while I was traveling 20-some years ago… But I still haven’t gotten over the chagrin at having wandered into bad parts of town in a country far from home… and I am still a bit insecure about going into unfamiliar areas when I’m alone.

No, I wasn’t gunned down by hunters when I took an off-the-beaten-path hike down a deer trail — without wearing bright colors — on the first day of deer hunting season… But I still can’t believe I did something that stupid, and I’m damned lucky the hunter that did spot me called out to me to let me know they were there.

Yes, I avoided getting into trouble with people who mistook my unusually intense manner for sexual interest… But I still kick myself for “giving people the wrong impression” when I was just trying to pay attention to them well enough to figure out what they were saying to me.

Needless to say, my life has not been simplified by my TBIs, and I really feel for others who are going through the same sorts of things, wondering — as I so often did — why the hell things were going so badly… again.

There are two types of problems I can trace back to my TBI experiences:

A) Fallout from the injuries themselves, for example:

• I was thinking more slowly after I got hit on the head so I made poor choices when pressed to respond in the moment
• I couldn’t follow what someone was saying to me, so I missed clues they were giving me, and/or
• I was having huge issues with my temper, anger, rage, and frustration which led to me acting out in unhelpful ways
• and so on…

B) Fallout from my inability to tell that I was having problems, to begin with, for example:

• I didn’t realize my ability to assess risk was diminished, so I was rash and took chances that I should never have taken
• I blamed other people for not speaking in ways I could understand, and I had huge attitude that alienated important people, like my bosses
• I didn’t realize I was thinking more slowly, so I got involved in activities that were far beyond my capabilities and totally screwed them up
• I thought my temper problems were because of other people’s shortcomings, and I blamed them constantly for my emotional and mental turmoil, without even suspecting the problem was really with me

Now, years later and with a whole lot more information under my belt, I can clearly see that there were plenty of times when my life was made a lot more complicated by my cluelessness about my broken brain. The lives of others were not made easier, either. It’s as though there’s something in my brain that needs to believe it’s okay, it’s fine, it’s doing quite well, thank you very much, and it doesn’t need any extra help… even when things are going really badly.

I recently read a post at the Brain Injury Help Blog that talks about brain injuries in terms of losing a limb. That’s ironic… it was exactly what I was thinking about, last night, while I was writing in my journal… how my brain has been changed irreversibly by numerous injuries, and as a result, my life is not — cannot be — will not be — the same as it could have been, had I not been injured and re-injured and re-injured yet again. That oh-so-important organ sitting between my ears has been altered in ways I can often not even guess at, only find out about in the course of my trial-and-error life. As much as I’d like to believe that neuroplasticity can restore critical functionality and enable me to function in spite of my injuries, the fact remains that my brain is broken.

What’s done is done, I know. The capabilities I once had — and I can remember so fondly — from my youth… or even only a few years ago… haunt me like 100 meter dashes haunt a sprinter who’s lost the use of their legs. Once upon a time, I was a brilliant kid with a richly promising life ahead of me. Once upon a time, I was way ahead of my peers on math and geometry, and I could memorize whole books of the Bible in the space of a few weeks. Once upon a time, I was an avid go-getter who wasn’t afraid of much at all, when it came to new adventures.

Then came the attacks… the falls… the sports concussions. Then came the confusion, the agitation, the rage, the drinking and drugs and defiance of authority. My fondest dreams stopped being crystal clear, and I unconsciously started to “down-regulate” my dreams, confused and overwhelmed and ready to believe the advice of adults who warned me away from chasing after my hopes and dreams because something was amiss with me. They couldn’t quite put their finger on it and they could never fully explain it to me, but something wasn’t quite right. And nobody knew how to help me – or even if I could be helped.

I did manage to recover, over the years, and I recouped a fair amount of my functionality – in large part because I kept clear of the mainstream and made my own way in the world, on my own terms, sticking to the margins of society and keeping my own company. But even my own private world was not safe from TBI, and the pastimes and hobbies I loved so much, even my keen ability to learn new and innovative skills and technology fell prey to more head injuries.

I used to be able to focus on my work for hours at a time without tiring. I used to be able to read for long stretches, researching, absorbing, and then constructively using new information that put me at a competitive advantage in the workplace. I used to be able to go to the beach without anxiety, to read fiction, to keep my shit together when all hell was breaking loose around me.

Then came the car accidents. And the fall down the stairs in 2004.

Now I can’t concentrate on even things that fascinate me for more than 30 minutes at a time. My ability to grasp new information has been altered completely. I know I’m lagging behind my professional peers, but I feel completely unable to reverse my backward slide. I used to be able to go to the beach, body surf, boogie board, roam up and down long sandy surfside stretches without a care in the world. I used to read fiction voraciously. And I used to be THE go-to person for the hardest jobs that demanded the toughest nerves of steel.

No more.

Now, I feel as though I’ve been cut off at the knees of the one good leg I had left after my tumultuous childhood… as though pieces of my foot, then my ankle, then portions of my shin, then my knee… have all been hacked out from under me. And while I used to be able to hobble around reasonably well, now I’m reduced to worse than a limp. On bad days, I feel as though I’m pulling myself along on my elbows. On good days, I can still tell there’s something missing. Something that used to be there, but now isn’t. Maybe I will adapt, maybe the rest of my brain will adjust. Or maybe it won’t. All I know is, I used to be able to do things that meant the world to me, and now they’re gone. Perhaps for good.

What makes matters even worse is, my brain doesn’t always know it’s having trouble, and I get myself into trouble without knowing it. I overextend myself when I’m tired, not realizing how fatigued I am and blowing up at people around me over little things. I take on too many tasks and I get turned around, make a mess of the ones I try to complete and/or completely forget about others. Like John Byler talks about in his 6-part video series on YouTube “You Look Great! Inside a Traumatic Brain Injury“, recovering from a TBI — even over the long term — is often a matter of pushing the envelope to see how well you feel and how well you can deal… only to run up against your limits and be sent back to Square One… over and over and over again.

It’s almost like I have a “phantom brain”, like some amputees have phantom limbs. My body and personal life are both accustomed to living in a certain way, and they cannot seem to adjust to a life without the capabilities I once had. My personality is invested in being able to function in important areas, and it refuses to let go of the idea that I can’t… I just can’t… keep up the way I used to, go-go-go the way I used to, interact and hold my shit the way I used to. My personality still tends to think that I’m perfectly capable of diving into things head-first and whacking my way through the underbrush with a machete, and getting where I need to go in good time.

It doesn’t seem to realize that the edge of my blade got awfully dull, several miles back in the jungle. It just keeps happily hacking away, wondering why the underbrush has gotten so much thicker over time. And why it’s taking me so long to go just a few feet at a time.

The phenomenon of phantom limb syndrome is a fascinating one — and for those who suffer from it, absolutely maddening. There can be pain, an itch, some sort of discomfort, or the constant sense that the leg or arm or foot or hand is still where it always was, going through the motions of what it once did… as though nothing had ever happened. The pain can’t be stopped. The itch can’t be scratched. The discomfort is wholly out of reach, because it doesn’t exist on the physical plane.

In a way, my own brain — though it’s still very much atop my shoulders — does the same thing on a more subtle level. It thinks that it’s still a lot more clever than it is, that my body is a lot more resilient than it is, that I have the same capabilities that I did when I was 15, 16, 24, 34, 38. And it frankly refuses to believe evidence to the contrary… until all hell breaks loose and I wind up in hot water.

Yet again.

Now,I would never presume to know what it’s like to lose a leg, or an arm, or a foot, or even a finger. All my body parts — knock wood — are still attached the same way as before, and God willing, they’ll stay that way. But deep inside the neurons and axons and dendrites of my broken brain, something is unhinged, detached, torn, sheared (or is the word “shorn?”)

And it doesn’t fully realize it. In the moment, when it’s hard at work, my brain thinks it’s 100% functional… but the proof is often lacking… and my “phantom brain” is surprised, yet again, at how easily it’s foiled. Not to mention feeling foolish that it didn’t learn its lesson last time. Learning fast and well and thoroughly used to be “my thing”.

That may no longer hold true. Along with a thousand other little things I don’t realize. Until too late.

Off in the distance, I hear the sound of laughter… haunting laughter…

The physiology of anger

Speaking of temper…  Here’s a blog post that talks about the physiological impact of anger.

This is pretty important, especially for TBI survivors. Anger and temper flares are very widespread among folks who have experienced head injury — even mild traumatic brain injury — but even so, they are woefully under-researched.

Personally, I feel there’s not nearly enough good information out there for folks to use — both survivors, family members, and the doctors who help them. It’s a problem.

I’m in the process of documenting my own anger/temper issues, talking about how I experience them, and describing ways I’ve found to deal effectively defuse — or at least deflect — the temper flares I have. And believe me, I do have them. Especially after my last TBI.

Sudden, extreme, inexplicable temper flares can be emotionally, socially, and physically debilitating. From the blog post I mentioned above, here are some of the ways anger affects our bodies:

1. Muscles that are needed to fight or flee become very tight, causing an “uptight” feeling.
2. Chemicals known as catecholamines are released causing us to experience a burst of energy (which causes a sugar deficiency, so that an angry person may “shake from anger”).
3. Heart rate accelerates: Because of our anger, the usual (average) heart rate of 80 climbs to 180 beats per minute.
4. Blood pressure rises: An average blood pressure of 120 over 80 suddenly soars to 220 over 130, sometimes even higher.
5. As the body prepares for survival, it safeguards itself against injury and bleeding. Likewise, an angry person’s body releases chemicals to coagulate (clot) the blood, creating a situation that’s potentially dangerous. Although there is no physical injury, the clot is formed, which can travel through the blood vessels to the brain or heart.
6. Rate of breathing increases to get more oxygen into the body.
7. Increased blood flow enters our limbs and extremities.
8. Attention narrows.
9. Hormones (adrenaline and noradrenaline) are released which trigger a lasting state of arousal.

Furthermore…

“If anger has a physiological preparation phase during which our resources are mobilized for a fight, it also has a wind-down phase as well. We start to relax back towards our resting state when the target of our anger is no longer accessible or an immediate threat. However, it is difficult to relax from an angry state. The adrenaline-caused arousal that occurs during anger lasts a very long time (many hours, sometimes days), and lowers our anger threshold, making it easier for us to get angry again later on. Though we do calm down, it takes a very long time for us to return to our resting state. During this slow cool-down period we are more likely to get very angry in response to minor irritations that normally would not bother us…. High levels of arousal (such as are present when we are angry) significantly decrease your ability to concentrate.”

Which means, the naturally hyperaroused, hypervigilant, brain fog state in which we already exist is only exacerbated by anger. We need to consider this. We need to see ourselves. We need to make a change.

Our bodies are already stressed, tensed and on edge any normal day. Why make it worse by not controlling our anger? It is, after all, an emotion that is within our capability to focus, modulate and contain.

Indeed.

The long-term effects of too much uncontrolled anger are in the same ballpark as the effects of long-term unaddressed PTSD, from what I can tell. In both cases, the physical system is dragged down, day after day, week after week, month after month, year after year… and what do we have to show for it? Yet more stress.

That being said, I wish I could say I just have PTSD, but my TBI makes it even more difficult for me to parse things through and manage my anger at times. I have to follow specific guidelines to keep myself in check, and I need to keep an eye on myself on a regular basis, lest my anger/temper/freak outs get way out of hand. I’ve lost jobs because of temper flares. And I’ve hurt a lot of people  I care about. Uncontrolled temper flares have done plenty of damage to my heart and the hearts of others. So, I owe it to myself to keep my anger in check.

And I owe it to myself to keep in mind the physical effects that uncontrolled anger has on me. Somehow, my brain finds it easier to wrap itself around objective, non-emotional reasons for staying chilled — like the physiological effects  listed above.

Objective data is one more tool in my toolbox for living well, despite multiple TBIs.

Oct.9.2011 – And here’s one more tool I’ve discovered since I first wrote this: TBI/PTSD anger management by using the breath

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Mind Over Body? Body Over Mind?

The other evening, some friends came over for dinner, and we got to talking about psychotherapy and trauma. One of my friends is a therapist who works with at-risk teens and adults, and they were telling me about how they approach dealing with trauma in their clients. I was getting tired, as the conversation was towards the end of the evening… I got a little turned around (and upset with myself) when I couldn’t figure out how to respond quickly to what they were saying. I felt like I was starting to sink underwater, with their words rolling over me. So, I just sat back and listened. I did learn something in the process.

They told me that they have a really high success rate with at-risk teens, and they’ve gotten plenty of support from state agencies that see the good results. There’s no disputing their effectiveness, and I wish more therapists had their gifts at assessing the needs of folks who are in real trouble and helping them through tough spots and post-traumatic stress.

They talked about how there is a lot of “really awful” trauma work being done, and how they are just so turned off by therapists forcing folks to recount their traumatic experiences, as though that will change anything. “Any idiot can get someone to tell their story!” they said, and I had to laugh. It’s probably true. Especially since a lot of traumatized people are just itching to tell the world about their horrors, for validation, support, whatever. There are a lot of therapists running around, in my experience, who are quite pleased that their clients have confided their awful experiences to them… as though getting them to talk is a sign that they’re helping them get better.

Maybe it does… or maybe it just re-traumatizes them all over again.

Interestingly, the way my friend was talking about trauma made me a little uncomfortable. I couldn’t quite put my finger on it, and I started to get upset with myself. I managed to calm myself down and pull back and listen more carefully. I had to remind myself that this person didn’t know that the inside of my head was a jangled tangle of sensory overload, so they probably didn’t think less of me — the way I thought less of myself. I had a feeling that they were sorta-kinda pushing an agenda or a way of dealing with trauma that worked for them, but didn’t quite fit for me. I felt like there was a missing piece to our discussion, but I was so out of it and so tired, I couldn’t figure out what it was.

One thing they said struck me, though… while we were talking, the subject of how we take care of our bodies came up. I was talking about dealing with doctors and physical issues, and they started telling me about how they hadn’t been to a doctor in 10 years, and they weren’t really interested in going anytime soon. They said that they had never paid that much attention to their body… they were more connected with their mind and spirit… and they were fine with that.

I wasn’t quite sure what to say. I’ve always been very much “in my body” and I’ve been really active in sports and other physical activities, all my life. For me, the body is an essential and central part of my life that I need to take care of, if my mind and spirit are going to be healthy. I am not in the shape of my life, by any stretch, but I’ve noticed a real connection between how my body is doing and how my brain is working.

And since I’ve been reading Rober Scaer’s book The Body Bears the Burden, I am even more convinced of the importance of the body connection with adequate cognitive functioning — at least, for me — especially with regard to trauma and post-traumatic stress. And when I look at the biggest contributing factors to my own cognitive-behavioral issues, they often turn out to be physical problems. Big physical/sensory problems.

My hands and wrists are starting to tire, after writing so much this morning, but I’ll just post this piece as a “flag” of sorts about this issue — the body-mind-brain connections that make my life so interesting… challenging… frustrating… and fulfilling.

My friend the psychotherapist may be able to live their life quite well without needing to pay attention to their body, but that’s not how I can live my life. For me, there’s a lot more to it than tending to my spirit and psyche alone. If I neglect my body and don’t pay attention to what it’s telling me, well, I just get into a whole lot of trouble.

Mind-brain-body-stress connections

I’ve been reading Robert Scaer’s book The Body Bears the Burden, about how the brain and the body interact in times of stress and trauma. It is absolutely fascinating reading, and I’m surprised it’s not a best-seller. It really clears up a lot of confusion for me and gives great insight into how the body’s experiences can shape the brain’s activity. He talks about the fight/flight response and the body’s instinctive freeze response, too. I’ll have to write more about it, when I go through it again. My head’s kind of whirling right now.

One thing that I immediately got… After reading just a bit of his book, I can now let myself off the hook for freezing “like a deer in headlights” when I’ve been in situations of high-threat. I am usually pretty hard on myself for being a ‘wuss’ when I freeze up in times of intensity. It doesn’t happen all the time, but now and then it does, and then I tear myself a new ___ (well, you know) for days after, beating myself up for not speaking up, not stepping up, not being as capable as I would have liked to have been. Turns out, I don’t necessarily have any control over freezing up. It’s instinct. Instinct that’s designed to keep me alive.

Yeah, I’ll have to write more about this later. It also ties into my paper about A Perilous Relief, which I’m in the process of researching. (See the link on the left for a current table of contents that will take you to what I’ve written so far.) There’s only one problem — I have to keep going back over it to re-read sections, because my attention span leaves a little to be desired… but I don’t realize I stopped understanding what I just read, until a few pages past the point where my brain stopped parsing the information.

Apparently, according to my neuropsych, this is not uncommon with TBI. So, I’ll just have to factor it into my research and leave myself plenty of time to digest everything I’m taking in. Lucky for me, it’s fascinating stuff, so I don’t mind taking my time with it. I don’t mind at all.