So much for my weekend off

Where’s my damn’ car?

Well, it was a nice thought. I had three days to work on my projects and pretty much unwind, catch up with myself, and sleep… get healthy, etc.

That was the plan, anyway.

Then my spouse got into a really bad car accident on Saturday afternoon, and I had to drive out to a country hospital to meet them and the business associate they were traveling with. The hospital was really old-fashioned – like something out of the 1950s, and the ER physician was about as dynamic as a brick. I’m not sure that he did a thorough job checking out my spouse, who hit their head on the door frame. They said they just had a bump on their head, and they didn’t have a headache. My spouse kept trying to charm the doctor, while he was doing the examination, which can’t have made his job any easier. I didn’t know what to do, other than keep them from lying to the doctor outright. They’re terrified of doctors, and they were completely freaked out by the whole experience. So, there was only so much I could actually do.

My spouse and their friend had their doubts about driving — road conditions were not good, and visibility was poor. But they had committed to the trip, and their destination had good weather, so they thought it would be fine, once they got out there. None of us factored in the weather between our home and their destination. Ultimately, thought,the real problem was no so much the road conditions — rather, the poor judgment and behavior of the person who caused the wreck.

They were not hurt badly, but they had to go to the hospital to be evaluated, and then because of their states of mind and body, they couldn’t get back in a car and drive home. So, we spent Sunday hanging out at a chilly little country motel, wrapped in coats and blankets, trying to stay warm, eating Sunday brunch, finding the tow yard where the car was, collecting their personal items, trying to fit them all into my little hatchback (with three people in it), and getting everyone home safely … from quite a ways away.

They are both truly lucky to be as healthy as they are. They’re lucky to be alive. They both could have easily been killed, if they’d been in a smaller car, or there had been more traffic on the road they were on. For that I am truly grateful. There are a lot of things to be thankful for in this. The car may be totaled, but I kind of hated that car, anyway. It was too big for my spouse — or just about anyone — to handle safely. Especially in low visibility. Or where the space is tight. They felt safe in it, but that’s a grand illusion.

I have no idea where or how we’re going to replace the vehicle, but I’ll figure something out. I just got some money from an estate settlement from a relative who died within the past year, and I was going to use that money to fix the house. But it looks like it may go to either fixing this car or buying a new (to me) one.

My insurance company already hates me, because I’ve filed claims for damage to the house that was actually my fault, rather than an accident. I didn’t realize you can’t file a claim if it’s your fault, or if you didn’t call a repair person to look at it before. I thought you could file your claim and then have the repair person come. I guess it’s the other way around. And now I look like an insurance fraudster. Nice.

But this accident was not my spouse’s fault, and it’s a legitimate claim. Basically, a young kid driving a fast car got “adventurous” on a very narrow road and caused 13 cars to pile up. 7 of them had to be towed (including ours), and a whole bunch of people went to the hospital, including my spouse and their friend/business associate.

And I spent Saturday evening and all day Sunday dealing with the fallout.

I know I’m rambling here. I’m tired and still out of sorts. It’s going to be a few weeks, till this settles down, I’m sure. I just have to keep on — steady on — and take care of myself. Keep balanced. Just deal with it.

Well, anyway, it’s time to take a break. This whole thing has got me thinking a lot about trauma and how to deal with it. I’ve already written a whole long rant about it — I’m going to split it into another section and publish it later. For now, I’m going to focus on being grateful that things didn’t turn out worse.

Because they really could have.

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The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

  • confusion & disorganization
  • anxiety
  • irritability
  • neck, back and joint pain
  • noise sensitivity
  • dizziness
  • ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

Found something to help me sleep

Check this out – click here to find it on Amazon (no, I don’t get a cut from your purchase – I just want you to have this)

Okay, so I’ve been functioning on an average of 6 hours of sleep a night — my acupuncturist says that this should be enough for me. I’m getting older, and as you age, you tend to need less sleep.

My neuropsychologist, on the other hand, knows full well that it’s no good for me to get 5-1/2 hours of sleep one night, then 6-1/2 hours the next, and 6 hours the next, and then (if I’m lucky) 7 hours of sleep. They know what havoc it can wreak with me, and there’s none of that fanciful “6-7 hours is more than enough” stuff coming out of their mouth.

I know, myself, that 6-7 hours is nowhere near enough. I’ve been struggling along with about that much sleep, each night, for quite some time now. Months. If not years. I function better on at least 8 hours a night — but I’ve been struggling to get even 7 hours at a shot.

Last night I got about 8-1/2 hours. Woo. Hoo. I went to bed early at 9:30, and I woke up around 6. I woke up actually feeling like I’d gotten some sleep. Pretty amazing. And I’m ready for whatever the day brings, which is a handful of errands, followed by a get-together with friends (and some strangers) to celebrate someone’s pending nuptials.

So, what worked? What helped me get to sleep by 9:30? Well, a couple things:

  • I was actually tired last night – I could feel it in my bones. This is different from how things usually are with me, because I’m usually so tired that I cannot even feel how exhausted I am. I’m wired, pushing through on adrenaline, and nothing can stop me or even slow me down. It’s a terrible way to live, and going to bed is a real chore and a struggle when I’m that exhausted. But last night, I could feel how tired I was. I was yawning like crazy before, during, and after dinner, and I couldn’t even keep my attention on the television, so I turned it off, did the dishes, wrote a little bit, and went to bed. When I got in bed, it felt so amazing to be horizontal and just be able to sink into the mattress and let it all go. How did I manage to let myself feel tired? Here’s how:
  • I had a nap yesterday afternoon. I managed to step away from my work for 45 minutes, and go to my car, which I parked in a remote dark corner of the parking garage. I lay a jacket over my body and face, and after I few minutes of getting comfortable, I slept. I’ve had a hell of a time being able to relax at work. I’ve tried stepping away to sit and meditate, and that does help me at times. But nothing helps like just getting 20 minutes of sleep. That’s the only thing that actually keeps me going. The only problem is, I haven’t been able to come close to feeling sleepy at work. I know I’m wired. I know I’m beat. I know I need to catch some zzzz’s. But I haven’t been able to get myself there. Till yesterday. How did I manage to sleep? Here’s how:
  • I put on my “Stress Hardiness Optimization” (S-H-O) relaxation CD, and I just let it all go. I originally intended to just do the relaxation, but I often end up sleeping when I do that, so that tells me I really needed to sleep That’s what happened yesterday. I got a little turned around with the settings on my phone, and I had to fiddle with that a little bit before I got the tracks to play properly, but I did figure it out eventually, and that was good. I had a some trouble just relaxing at first — which is to be expected. But after a little while, I was able to just relax and let it go… and then I got some sleep. I only slept for 20 minutes or so, which is all I needed. And then I was up and ready to go back into the fray — which is what it is.

I’ve missed listening to those MP3s and I realize that they’re really an important part of my continued recovery and functionality. I have been listening to Belleruth Naparstek, now, for about 7 years. You should really check her out, if you get a chance. I believe she’s got MP3s up on iTunes, and you can get her CDs off amazon.com. I can’t recommend S-H-O enough – it’s literally a life-saver. She’s got a bunch of different recordings — for sleep, overcoming trauma, anger… you name it, she probably has a CD to help with it. Even dealing with dying (if that’s happening in your life, these days). And it helps. The science is sound, and my experience is even better evidence for me.

My experience is really all I need, to be truthful. It tells me, this works.

I found out about Belleruth from a friend who was dealing with PTSD, ’round about the time when I was figuring out my TBI issues, and I went to see her when she spoke, a few hours away from where I live. I was skeptical, at first, because it seemed like so much woo-woo flowery touchy-feely “wellness” stuff, that it turned me off.

But I tried to keep an open mind, and when I heard her talk, and I overheard others at the conference talking about her — and not only frilly psychotherapists, but tough guys who taught inner city public school — I was warming up to her work. And when I read her “Invisible Heroes” book and read about the physiological science behind PTSD and recovery and the role that guided meditations can play in recovery, I was well convinced.

And when I started using her CDs myself, I was converted 100%.

I have listened to her stress hardiness exercises intermittently over the years, and they really helped me, at the start of my recovery. But I got away from it because it started to get boring. And when they upgraded my phone at work, I lost the MP3s I had on my old phone, and I didn’t get around to putting them on my new phone. Yesterday, I had some time in the morning before I went to the office, so I put the MP3s back on my phone, and I’m really glad I did.

I think the thing that works for me — that makes the S-H-O work for me, is that I can turn off my head and listen to someone else do the talking for me. And there’s music that sets a slower pace… and the whole thing is engineered to calm down your system and strengthen you. It’s actually designed for military and first responder personnel, as well as people in intense work situations — the last of which applies to me. I am in an intense work situation, and I need the extra help. Removing stress from my life is not an option — it’s there, and it’s going to be there, and as long as I’m dealing with my TBI stuff (which is all the time), there is continuous stress in my life. So, I have to find a way to optimize my system for it, rather than running from it or trying to get rid of it.

So, I got my sleep last night — 8-1/2 hours worth. Woo. Hoo. This is seriously good news. And now I need to pace myself for my morning and give myself time later this morning after my errands, to listen to S-H-O again and do my relaxation. Maybe even get some sleep. Because the one thing that helps me sleep through the night, is getting a little nap during the day.

It just makes everything more workable. It totally saves my ass. And for power naps and stress hardiness optimization CDs, I am eternally grateful.

Onward…

When life sucker-punches you after TBI

The Concussion Blog posted a great video a little while back explaining concussion

One of the things they talk about in the video is how the “sucker punch” can do you more harm than a hit you can brace for. A sucker punch doesn’t let you get ready to get hit. You just get hit.

The same kind of thing happens with your life after TBI – you have all these “sucker punch” experiences, where you get hit with all kinds of unexpected circumstances, because you think things are going to go one way — based on your prior experience and brain training — but they go completely different, because of your brain being a bit “re-adjusted”. Things that “should” be easy, turn out to be hard. And you can end up in a state of panic and confusion on a regular basis.

This is a problem for a number of reasons.

First, it sucks. It’s unpleasant, it’s irritating, and it can be distressing in the moment when it happens. Your best-laid plans fall apart. Your plans and expectations don’t pan out. And you don’t always know why.

Second, it makes you doubt yourself. One mistake is a mistake. Two are a possible coincidence. Three are a pattern. Four can make you start to second-guess yourself from every angle. And when this happens to you, day in and day out, the cumulative effect is… well… not good.

Third, it hampers your ability to learn new things and re-train your brain.  See, the thing with TBI is you have to retrain your brain and learn new things and restructure the way your brain works. When you are stressed and defensive and confused, it is harder to learn. It is harder to acquire new skills. It is harder to re-train your brain’s connections in the way you want them to be trained. Stress seriously impedes our ability to learn new things — and that’s exactly what you need to be doing after TBI — learning new things.

Fourth, it can trigger a case of PTSD. Not many people out there seem to be paying much attention to this. They seem to think that PTSD and TBI have different causes. But TBI, with its recurring “micro-traumas” can build up a real stockpile of stress and stress hormones and ultimately cause full-blown PTSD to emerge. This is just common sense. When you understand the nature of PTSD as a mental and physical response to unresolved mental and physical traumas, and you understand that TBI can be an ongoing source of traumas that never get cleared out, in part because nobody’s paying any attention and taking them seriously… well, then you’ve got a problem.

What to do? Learn ways to clear out the traumas on a regular basis — physically first, then mentally. Find ways to get your body to clear out the “sludge” that comes from shock and surprise and stress — including exercise, meditation, breathing exercises, rest and relaxation — so that your body isn’t hijacking your brain’s attempts to right itself. If you can find someone to talk to about your situations, who can help you feel supported by someone in your corner, that can help, too. The main thing is figuring out ways to clear out the after-effects of all those little unpleasant shocks and surprises that cross your path on a regular basis.

Speaking of clearing that stuff out, it’s time for my walk. I have about 36 hours left in this vacation, and I’m going to make the most of it.

Onward.

 

TBI Recovery: Getting used to the highs and lows – Part 2

For many, many years, I have swung from one extreme to the other — from euphoria to panic to depression — with intermittent periods of balanced moderation, where I caught my breath before going back into the fray. I’ve long sought out work situations which were crazy and stressful and stupidly health-endangering (which passed for “challenging” in the job-spin-speak of the tech world), because I needed that constant pump to keep myself going. TBI can slow down your processing speed and make you feel like you’re half asleep, so those stressful times passed for “wakefulness” and made me feel more alive.

In hindsight, I realize that I was pretty much a ticking time bomb and that it was only a matter of time before I hurt myself badly enough to be ejected from the “everyday world”. I have had multiple mild TBIs over the course of the years (at least 9 that I can recall — and there have probably been more that I can’t remember). So, the effects have been cumulative, and sure enough, back in 2004, I had another fall that eventually put me out of commission.

The past years have been about weaning myself off that need for drama and stupidity. I’ve become increasingly aware of how much damage it does to me, and I’ve been acclimating myself to the idea that I don’t actually need it all, like I used to think I did.

Now I feel like I’m in a good and centered space, where I don’t have to have it, but at the same time, I do need challenge. And even moreso, I need to be able to respond to challenging situations with a level head and a clear mind.

Looking back at my life when it was still dictated by after-effects of all those TBIs, I see how much my life was comprised of reactions. Just reactions. Not measured responses that were determined by me, according to what was best and right at the moment — but knee-jerk reactions dictated by fear, anxiety, panic, external circumstances, and others’ expectations. That’s no way to live. Surely, there must be a better way.

So, I’ve been headed down that road, of late, looking for ways to live better, live more fully, and to have the kind of life I want to have.  I think about the things that hold me back, the things that I have done that have held me back, and the habits of thought that have prevented me from moving forward. And it becomes more and more apparent to me, as I think about it, that no outside circumstances have been The Culprits in my limitations, rather it’s been my own reaction and my own experience and my own choices that have held me back.

Now, certainly, things like getting clunked on the head a bunch of times, being hounded and bullied in school, being mistreated by both my parents and teachers alike, and being raised without much money in a household turned upside-down by a drug addict sibling and their associates, certainly didn’t help. But those things didn’t keep me from doing the things I could have done to help myself. It was the patterns of thought in my mind that held me back — as well as the biochemical reactions to circumstances which short-circuited my choices and actions.

All those years, I certainly did take a beating. But plenty of people take beatings and get up and go back at it, like nothing ever happened. Not everyone interprets setbacks as signs of permanent disability. Granted, I wasn’t surrounded by people who were positive, pro-active thinkers who knew how to free their minds. But at any given point, I did indeed have the capacity to pick myself up and keep going, but the thoughts in my mind and the biochemical sludge in my system short-circuited a lot of the good that could have happened.

My constant biochemical state of intense fight-flight (which was made more intense by what I thought was happening — and never adequately questioned) made it all but impossible for me to imagine all that I was capable of doing, and over the years, and after all the injuries — especially the last one — my possible world became smaller and smaller and smaller, and I made myself less and less capable, in my own mind, of truly following my dreams.

Now, don’t get me wrong. Over the years I have done some Big Things, and I have had some big accomplishments that have gotten me awards and recognition. But these were all substitutes for what I really wanted to be doing. My One Big Dream that I had since I was seven years old, never “panned out”, and year after year, my resolution to do something about it drifted farther and farther from my reach.  Until I just about gave up on it.

These days, things are very different for me, and I realize just how much biochemistry has to do with what’s held me back. And at the same time, it both absolves me of prior blame, and it also offers me the opportunity to change things.

Because now I understand how those things work. I understand how TBI has prompted me to take risks over the years and keep myself in a constant state of stress. I also understand what a toll that has taken on my life over the years, and I’m now resolved to do something about it.

In order to do so, I need to get a grip on my autonomic fight-flight response, which is what I’ve been doing, slowly but surely. I am now moving into the next stage, where I am testing myself a bit, here and there, to get myself familiar with how it feels to be on the verge of panic, and then walk myself back from the edge with the tools I have. I’m stressing myself just a little bit, here and there, to inoculate myself against the stresses. Some call it “exposure therapy”, and maybe that’s what it is. Having read about exposure therapy, it strikes me as more intense than what I’m doing. I don’t want to force myself into a seemingly dangerous situation and then have to sweat it out. No thanks.

What I am doing is similar to doing interval weight training — I’m doing “stress intervals” — intentionally stressing myself for a short while, then backing off and taking a good break. I know I’m going to push myself hard — and I also know I’m going to let up. So, there’s not that impending sense of doom that comes when I can’t see an end in sight. I know there’s going to be an end, so I can push myself — sometimes pretty hard — and not get freaked out about it.

This gets me used to the highs and lows. And it helps me feel more comfortable with the sensation of those highs and lows.

See, that’s the thing – it’s not the highs and lows that get me. It’s my internal reaction to those highs and lows — the physical sensations of high energy or low energy trigger a dumb-ass (and extreme) reaction from me that sets certain behaviors in motion and put me into a certain mindset. Some examples:

  • I get back from a long and grueling trip to see both sides of my family, and I decide that I’m a worthless piece of crap who will never amount to anything. I’m physically and mentally and emotionally exhausted from a temporary situation, yet for some reason I’m convinced that I’m permanently damaged beyond repair. Accordingly, I slack off on my work and do nothing productive with myself for days, even weeks.
  • I work too hard and sleep too little, and I end up having a full-on blow-out/meltdown that fries my brain with a flood of raging emotions. Afterwards, I am exhausted, and it takes several days for the biochemical load to clear from my system. All during that time, I feel stupid and numb and dull and once again am convinced that I’m permanently damaged beyond repair.
  • I am incredibly excited about something that’s happening in my life. The sensation of all that adrenaline pumping through my system feels an awful lot like danger — it feels just like it used to feel when I was being hunted down by the kids who bullied me in grade school. Consequently, I stop doing what I need to do, to make progress with my goals. I also look for other things to work on that are less “stressful”, and my project falls behind.

All of the above are problematic, but it’s the last one that’s the burner. It’s the thing that’s kept me back, time and time again, and it’s the one I need to really focus on addressing.

So, to that end, I’m deliberately putting myself in exciting and tiring situations, getting used to how they feel while telling myself that this is just a feeling, not an indication of what’s really going on. And then I take a break. I have all but cut wheat and cheap carbs out of my diet to reduce the “junk load” from my system — which in itself is a little stressful, but has great benefits. I’m also doing things like taking cool showers to get my stress response jump-started for just a few minutes in the morning, and I’ve changed up my morning routine a little bit to heighten my attention.

And all the while, I’m using the techniques I’ve learned for balancing out my ANS and keeping the fight-flight response within a manageable, non-tyrannical range. I do it both — stress and relax. Intermittently. Not constantly, because that would be counter-productive, but at intervals.

I have to say it feels incredible. It’s tiring, at first, and taking cool showers instead of hot, is definitely an adjustment. But it’s really helping.

TBI Recovery: Getting used to the highs and lows – Part 1

One of the things I’ve been actively doing, over the past months, is getting use to the highs and the lows that are just outside my comfort zone. I’ve struggled a great deal with panic and anxiety over the decades, which I believe has been connected to a hefty dose of post-traumatic stress (or PTS). The classic symptoms of “disturbing recurring flashbacks, avoidance or numbing of memories of the event, and hyperarousal” have been a regular part of my life for as long as I can remember. The strange thing is, my flashbacks and numbness have been related to events that many others would not consider that stressful — making a fool of myself in front of other people, having bad choices of words, doing stupid things, making poor decisions that got me in hot water with authorities (including the police), and so on.

I’ve been flashing back on things that others would consider “just embarrassing” for a long, long time, and I’ve been intensely stressed out over it, avoiding situations, and on edge (that is, ON EDGE) for as long as I can remember.

Until, that is a couple of years ago, when I really started to come out of my TBI fog and things started to fit together for me, better and better, like they never had before. To be clear, I didn’t just magically come out of my fog for no apparent reason. I did the following, which all helped:

  • Got myself on a daily schedule of doing specific things at specific times in specific ways, so I didn’t spend a lot of mental energy figuring out how to do things. This allowed me to develop the objective, observable 100% certainty that I could get myself up and cleaned up and dressed and out the door each morning in a predictably good way. It took the pressure off my mornings and let me relax about the details — because I didn’t have to think about them. At all.
  • Exercised on a regular basis. For several years running, I got up and lifted weights and did some light cardio, the first thing in the morning before breakfast, each and every day. I never wavered from that. It was my morning routine, part of what I Just Did, and the jump start to my brain and body made me feel worlds better than I had in a long, long time.
  • Started cooking more complicated meals. I have been the main cook in my household ever since my spouse got very ill about six years ago, and it made a great deal of difference in both our health. I got into a bit of a rut, and ended up making the same things over and over. When I started cooking more complicated meals, it pushed me to work on my timing as well as my sequencing. And it make our diet more varied, which was good.
  • I learned to relax. This took some doing, but with some guided imagery tapes that I combined with rest/nap time, I have slowly but surely acquired the ability to relax. And for the first time, I know how good it feels to do that. Up until a few years ago, that was not the case.
  • I started sitting za-zen (my own version of it) and doing conscious breathing. My version of za-zen involves just sitting and breathing, sometimes a short while, sometimes longer. I have come across a number of pieces of scientific literature talking about how this helps to balance out the autonomic nervous system (ANS) and get you out of fight-flight. It helps stimulate the parasympathetic nervous system and get you back to a place where you’re not tossed about by every wind that comes along.

Over the past couple of years, I’ve changed how I do things — some of the things, like regular exercise and za-zen, I stopped after a while. I guess I just got bored with them and felt like they were keeping me from doing other things I needed to do. I also let them get rote and boring, and they stopped being any kind of a challenge. I need to be challenged, or I can’t keep my interest piqued. It’s a shortcoming of mine, I know, but that’s how I am.

Currently, I’m back at the regular exercise. All I have to do is look at my skinny little forearms (typing isn’t nearly enough exercise for them) and look at myself in the mirror to realize that I need to do something about this sad state of affairs. Also, my endurance is way down for doing chores outside, which is not good, either.

I’m also taking a za-zen type of practice into my everyday life, using it in my 90-second clearing approach to really take the edge off my everyday experience. I haven’t completely abandoned it. I just needed a new way of using it in ways that got me going in my life, instead of taking me away from life — as sitting za-zen will do.

As for the exercise, after laying off for a long (too long) while, I’m doing more strengthening in actual movements that I do on a daily basis — not the isolated types of movements that focus on a specific muscle group and are useful for bodybuilders. I’m building overall strength, not just specific muscles.

I’m continuing to do my rest/relaxation thing, stepping away from work during my lunch hours to listen to guided imagery and relax — sometimes sleep, too.

And these several pieces are important for what I’m doing now, which is pushing myself a little beyond my routine to challenge myself and keep things interesting. I’m training myself to handle my highs and my lows, and not let them get to me.

To be continued…

Wounds That Don’t Bleed

“Wounds That Don’t Bleed” is a group of people dedicated to bring to light the tragedy of PTSD and the effects it is having on both active duty soldiers and those who reside here in the states.

Their team created this music video on the topic that can be viewed here: http://www.youtube.com/watch?v=2bDSgahGKnk.

You can also check out their website at http://www.woundsthatdontbleed.com and their Facebook page at https://www.facebook.com/WoundsThatDontBleed.

You can also email them at woundsthatdontbleed AT gmail DOT com.

The Importance of Team Support on the Road to Recovery

It would be nice to think they exist

I found an interesting article today — about a Marine who did something about the isolation that veterans go through when returning with injuries – especially TBI.

They train together. They fight together. So if wounded, why shouldn’t they go through recovery together? This was the question that Lt. Col. Tim Maxwell asked about his fellow marines being discharged from the hospital and left alone to recover from injuries of war.

“When you’re in the hospital, you are with other wounded warriors. But once you are out of the hospital, it’s tough,” explains Maxwell.

He should know. While on his sixth combat deployment, Maxwell sustained a severe traumatic brain injury (TBI) during a mortar attack in Iraq. When he awoke a month later at the Bethesda Naval Medical Center, doctors didn’t think he would survive. The
shrapnel that penetrated his skull inflicted severe damage to his brain, impairing his vision and leaving him unable to talk or walk.”

Read the full article here (it’s a PDF download). >>

This is the kind of news I love to read – the kind of forward thinking that comes from within the ranks of TBI survivors. I understand that Lt. Col. Tim Maxwell is now retired, but I believe Maxwell Hall is still going.

And I have to wonder if these things are still going on, if they are still holding up under present circumstances, or if the resources and halls and support networks are able to stand on their own, after their founders retire or just can’t do it anymore. I wonder if the “superfriends” ever get replaced when the original members bow out or fade away. Of course, in the comics, none of the Superfriends die or are destroyed. I think… But in real life, does that really happen?

Seldom.

I suppose in a way we are all on our own, and we all have to take it upon ourselves to take steps to get better, when we get hurt or injured. But what about those who just cannot find it in themselves to do that? What about those whose brains are damaged in ways that keep them from even wanting to get better… or that keep them from even realizing they need to improve?

And what about those who go back to lives after their injuries, surrounded by people who neither know – nor care to learn – about what TBI / concussion can do to a person, and who just can’t bring themselves to help.

Yesterday I spent much of the day with a friend who has been through some serious sh*t and could relate to some of the difficulties I have, now and then, with fatigue and light/sound sensitivity. All through their growing-up years, they were in and out of trouble, in and out of institutions, so when I talk about having a tough time at this or that, they seem to get it. And they don’t judge.

I don’t know how much they know about my TBI history – I’ve never brought it up, but my spouse may have mentioned it in past years when I was having a much more difficult time than I’m having now. I just don’t have the heart to bring it up in person. Whenever I try to discuss it with people who didn’t know before, they usually either make some blanket statement about how “smart” I am and how it’s just not possible that I could have any brain issues… or they back away from me, become distant, don’t bother with me the same way the did before. So, I haven’t said anything about it, specifically.

But that didn’t actually matter yesterday, because I could talk about the difficulties I have with getting tired and then having everything crash in on me… or losing my cool and freaking out… or whatever various difficulties come up in the course of my everyday thanks to TBI stuff. I could talk about these things not as TBI-related, specifically, but just generally in my life. The “why” about it didn’t matter as much as the “what” — in other words, I could just discuss the issues without getting into the root causes, and get some feedback about what to do.

And that’s the thing that I have learned will help me, when I need feedback or support — not getting specifically into the TBI-nature of my issues, but just talking about them as I experience them.  So long as I don’t go down the road of “I was brain-injured in 2004, and nothing has been the same since”, and I talk about the things that happening with me just for what they are, I can actually get some useful feedback from people.

It’s the “brain injury” thing that keeps me cut off from the rest of the world. It’s the root cause that is the problem with people, I have found. But when I don’t get into the causes, and I stick with the end result that I need to manage, people can actually hear me and help me out. Or at least not push me till I’m crazy.

And it’s funny – when I first learned about TBI and finally had an explanation for why I was so screwed up and everything was falling to pieces around me, it was like I was finally free. And I thought that telling others and educating them would help them the way it had helped me. But all it did was freak them out. They just couldn’t deal. And everything got lonely really quick. Then I got to a point where I made peace with this loneliness and just focused on my own TBI recovery, understanding how it affected me, and getting a handle on what I really wanted to change in my life. Then I got to a point where I was less focused on the brain aspects and more concerned with the end results and managing them, getting them better. And now I’m at a point where I am mainly interested in having the best life possible, without making everything that goes wrong about my brain’s problems, and making it more about getting on with my life, picking myself up after I fall… and being able to talk to people about my issues in ways that they can hear and support – instead of getting all freaked out about it.

That’s how I get my support, these days. I’m still learning the best way of doing these things, and I still don’t have a lot of friends I can actually talk to about what I’m experiencing. But at least I’ve learned a thing or two in the past four years.

Actually, you know what…? I’m really tired and foggy. I’m really struggling to put words together, right now, and my head feels like it’s packed over-full of cotton. I have been at this computer for the past 2 hours, reading and writing, and I need a break. So, I’m going to pick myself up, change my clothes, then get out and walk in the woods for a while… and be quiet and settled and not worry about much of anything.

And that, my friends, is probably the best support I can give myself today.

Soldiers Who Suffer Mild TBI During Combat May Be More Vulnerable to PTSD

Study Links PTSD to Hidden Head Injuries Suffered in Combat.

Even when brain injury is so subtle that it can only be detected by an ultra-sensitive imaging test, the injury might predispose soldiers in combat to post-traumatic stress disorder, according to a University of Rochester Medical Center study.

The research is important for physicians who are caring for troops in the years following deployment, as they try to untangle the symptom overlap between PTSD and mild traumatic brain injury (mild TBI) and provide the appropriate treatment. Until now, the nature of the interaction between TBI and PTSD was unclear. URMC researchers believe they are the first to find an association that can be demonstrated with advanced imaging techniques.

The study is published online by the Journal of Head Trauma Rehabilitation.

“Most people believe that, to a large extent, chronic stress from intense combat experiences triggers PTSD. Our study adds more information by suggesting that a physical force such as exposure to a bomb blast also may play a role in the genesis the syndrome,” said lead author Jeffrey J. Bazarian, M.D., M.P.H., associate professor of Emergency Medicine at URMC, and a member of the 2007 Institute of Medicine committee that investigated brain injuries among war veterans. (continued…)

Read the rest here >>