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 >>

The problem is not lack of sleep – it’s lack of energy

So, I made myself a different sort of coffee this morning, and the results were fantastic. Just after a couple of cups of joe that had some high-fat grass-fed butter and coconut oil in them, I felt like a completely new person.

Pretty phenomenal. And I didn’t even do the full dose.

I had high energy all morning, and I got a ton of stuff accomplished. I felt clearer than I have in quite some time — and this from just one morning.

I went out for a walk and then ran a bunch of errands, and then I came back, and was feeling a bit down. So, I had a nap, and was up an hour later to help my spouse and their business partner with some packing and hauling stuff for a trip they’re taking tonight.

After they hit the road, I made myself a big cup of tea with some butter and coconut oil, and sure enough, the energy is back again. I can’t even express how amazing it feels.

If I didn’t feel so excellent, I would weep for joy. But I’m way too happy for tears.

The thing is, I got about six hours of sleep last night. I went to bed around 10:30, but I didn’t get to sleep till around 11. Then I woke up at 5:00. Just woke up. And I was dreading today, because I have two days to do a lot of things, including some day-job work that I didn’t get done last week. But after my “bulletproof” coffee, I had such incredible energy, I felt like I’d had 8 hours of sleep, easily. And the energy lasted till about noon, when I started to drag. Six hours of steady energy is pretty danged good, considering my long-term track record.

Then I had my nap, but I was still dragging a little bit. I was feeling a bit out of it and foggy until I had my tea with the butter and coconut oil. Now I feel like myself again — with a lot of really great energy that’s not wired and jumpy. I just feel good. Like I can go for hours again. And I probably will.

So, it’s got me thinking…

I had six hours of sleep — “not enough” according to conventional wisdom — but I felt fantastic all morning.

Then I had a nap, which perked me up a bit, but still left me feeling a bit dull.

Then I had some tea with butter and coconut oil, and I’m feeling fantastic again.

Maybe the issues is not so much that I’m not getting enough sleep… as it is that my body isn’t getting enough good nutrition (high quality fats) to keep going.

Maybe the problem is not inadequate rest. Maybe the problem is available energy, and how my body is able to access and use it. Maybe my overstressed system just hasn’t been doing a good job of converting all the available resources I have into useful energy.

Maybe my brain isn’t getting what it needs to operate at peak.

But today I had a very different experience. Today I had a whole new view of what my life can be like.

More focus. More energy. More stamina. That’s been my day today. On six hours of sleep. And a nap. With two cups of “bulletproof” coffee and a cup of butter-coco-oil tea.

This means the world to me. Ever since my TBI in 2004, I have felt extremely stressed. By just about everything. That stress has been very real, and it’s cost me jobs, it nearly cost me my marriage, and it’s driven a lot of people away from me. It’s worn me down and made me feel like just a nub of a person, it’s aged me considerably, and it’s taxed me on all conceivable levels. Things got so jumbled up in my head, and I got so turned around, every day was a struggle to just figure things out. It was like trying to chop my way through the jungle with a dull machete. Just not good. Exhausting. Confusing. Frustrating. And totally unavoidable.

I had to live my life, after all, whether or not there were trails laid down for me in the jungle.

So yeah, I’ve been pretty tired for a long time. My system has been overworked, overtaxed, and I’ve been running on fumes for a long, long time.

Which is why I’m so incredibly stoked that I discovered this new way of making coffee — that actually works for me. It actually works.

Today, anyway.

I don’t want to overdo it… I’ve gotta pace myself. And it could turn out that eating all those fats doesn’t suit me for the long run, but the way I’m feeling right now, it’s like the heavens just opened up and God handed me a second chance.

Now I just need to do the right thing with it.

I’ve got some more work I need to do tonight. And again tomorrow. I think I’ll take a crack at some of it, and then save some for tomorrow. It’s all good.

And with this energy I’m feeling, I’m also better able to tell when I’m physically tired… I’m getting there.

It’s all a process, for sure. I find my life stabilizing, and now I’m ready to start rebuilding for sure. I have really gotten hammered through the years, and now all my hard work is finally paying off. So, I’ll make the most of it, and keep on keepin’ on.

It really is all good.

Onward.

TBI Anger Hack – from cracked.com

Cracked.com has a great piece on 5 Brain Hacks That Give You Mind-Blowing Powers. The title is a bit overblown, but it hooked me, so I picked up some tricks… and found this useful piece of info. I’m going to add it to my collection of lifehacks to deal better with all the crap that gets sent my way. The principle is the same as with intermittent fasting — which helps me with my self-discipline and helps me learn to better manage my internal state when I’m just a little stressed. Here’s what they have:

#2. Control Anger by Using Your Less-Dominant Hand

Hemera Technologies/AbleStock.com

Everyone knows at least one guy who hulks out over the stupidest things — a messed up coffee order, a red light, global warming. Usually these people are just harmless joke fodder until they road rage on an elderly person over a politically charged bumper sticker. If you don’t know one of these people, consider that it might be you.

Of course, there are all these tricks that your mom taught you that are supposed to calm you down (“Stop and count to 10!”), which of course don’t work because in the moment you’re enraged, you can’t think logically anyway. What you need is to beef up your anger defenses before it gets to that point.

Hemera Technologies/AbleStock.com
“Somebody stop me before I rob a sperm bank and make this town disgusting.”

The Hack:

This one comes from the University of New South Wales, who found the perfect anger-management trick, and it wasn’t cool jazz music or playful kittens wearing sunglasses. People who had anger issues were asked to spend two weeks using their non-dominant hand for anything that wouldn’t endanger anyone: opening and slamming doors, writing hate mail, pouring coffee, and other dirty activities that are now crossing your mind. After two weeks, the subjects could control their temper tantrums better, even when other participants deliberately insulted them to get a reaction.

Why would this possibly work? Well, looking at angry people under brain scans shows that outbursts are less about too much anger and more about depleted self-control. That’s both good news and bad news. The bad news is that self-control is a finite thing, and you can run out of it. The good news is that it’s a physical mechanism of how your brain works, and you can strengthen it (or hack it into working better).

Digital Vision/Digital Vision/Getty Images
“Fudge you, mother lover!”

Now, you’d assume that the only way to do that would be some kind of meditation or long classes in anger management. Or maybe to pay somebody to make an annoying noise in your ear for hours at a time and slowly decreasing the frequency with which you punch them in the head. But it turns out it doesn’t take anything like that — just asking these people to use their clumsy hand to do everyday tasks forced them to deal with hundreds of tiny, totally manageable moments of frustration. But that was enough to make them somewhat immune to it.

So, when things got ugly, suddenly they found that the walls around their internal anger demon were stronger. And it’s probably also calming to know that if things get so bad that a gunfight breaks out, you’re now capable of dual-wielding that shit.

BananaStock/BananaStock/Getty Images
“Oh, hey, you are totally correct. The grass is indeed purple. My mistake.”

TBI Lifehacks – My ticket back to health, wealth, and success

Once you know how things work, you can come up with new solutions

So, life is becoming pretty awesome for me, I have to say. There are a lot of challenges in my life, still, but working so hard to overcome all the craziness from the past ten years is really starting to pay off.

I find out next week if I get a raise. If I do, it will be a big friggin’ deal, because although I did get a slight increase in pay last year, this year is different, because it’s not all going back into paying off debts. This year, it’s an actual raise, because it’s coming to me, instead of creditors.

I have successfully wiped out about a year’s salary worth of outstanding debts, and that’s not a small thing. It’s taken me four years to do it, but I finally made it.

I made it. And now I can truly have take-home pay, instead of being a way station for money that comes from my employer and goes directly to someone else.

So, if I get a raise, then so much the better. Heaven knows, I’ve worked for it.

God, have I worked for it. My life has been pretty much centered around my recovery from multiple TBIs, ever since I realized back in 2007 that this was going on with me. I happened up on information about mild traumatic brain injury almost by chance — I was taking care of a loved-one who’d had several strokes, and I was researching the brain and brain injury. And as I read about brain injury, I looked at my own life, and I realized that it all sounded eerily familiar. And I realized that despite cashing out of a good job a few years before, and getting two years’ worth of salary from stock options, I was nearly broke. And I realized I didn’t know why.

Suddenly so much made sense.

So, I have dedicated my life to learning as much as I can about my own particular situation and finding ways to approach and address it that will lead to greater health and balance. Wealth and success are welcome, too… especially since I was somewhat wealthy and very successful before I fell in 2004.

A lot has changed, and a lot has improved dramatically over the past 7 years, since I first embarked on this quest. And looking back on my life and my activities, I realize now that what I’ve been doing is what you could call “life hacking” — finding”an inelegant but effective solution to a specific problem in [everyday] life.” (See the Wikipedia explanation of life hacking here)

Life hacking refers to any productivity trick, shortcut, skill, or novelty method to increase productivity and efficiency, in all walks of life; in other words, anything that solves an everyday problem of a person in a clever or non-obvious way.

This is essentially what I’ve been doing for the past 7 years. “Hacking” as most people understand it, is a bad thing that breaks systems and lets criminals do bad things. But hacking is really about understanding a system, how it works, how it’s put together, and then based on that understanding, coming up with an unorthodox solution to problems that arise.

If you look at the Lifehacker web site or instructables.com you’ll find a ton of tips and tricks and approaches to things in everyday life that are not only cool, but also time- and money-saving, which is the whole point. People are figuring out everything from using voice recognition to write software code more efficiently, to putting handles on your grill, so you can add charcoal more easily. It’s all about making life better, by doing things a little differently… because you understand how the system works, and you can bend the rules here and there to take advantage of certain aspects of the system that other people take for granted as set in stone.

Few things are as set in stone as many people believe, and that especially goes for the brain. It’s an amazingly complex system, and it varies from person to person (as does TBI), so there are countless ways to improvise and innovate, once you know the underlying principles behind it.

You don’t have to be a rocket scientist (or a brain surgeon) to address TBI from a hacker standpoint. You just need to know some fundamental principles, be willing to experiment and try new things, you have to be willing to pay attention to what you’re doing and what happens as a result, and you have to be brutally honest with yourself about what’s really going on with you.

You’ve got to be both awed by the vastness of the interconnected system inside your head, and also be a bit of a heretic who’s willing to push the envelope with what’s “possible”.

The things that have been the basis for my own recovery have been:

  1. Understanding that the brain is indeed “plastic” — that is, it changes in response to input and experience. Any kind of learning is an example in plasticity, as are the changes that people go through in the course of their lives.
  2. Believing that by trial and error, I can find the best way to live my life — and also change my brain. It’s fine to read books about how others do it, but there’s nothing like real life experience to make it real — and make real progress.
  3. Re-defining “mistakes” as opportunities to learn and change and grow, and not shying away from making as many mistakes as possible.
  4. Believing that nobody can know better than I, what works best for me and my brain. I can listen to what others say and try out what they suggest, but nobody knows better than I, what really works best. Things that look great on paper and have a good success rate in formal circumstances, can turn out to be useless — or even harmful — for me.
  5. Trying… and trying again.

Observing has been a huge part of my recovery. Observing and adjusting. When I came across the Give Back TBI Self-Therapy Guide and started working with the principles, it really made a lot of sense. And best of all, it turned out to really work well for me. Some of the suggestions aren’t so great for me, but the fundamental underlying principles are sound, in my experience, and they’ve been hugely helpful for me.

Also a big part of my recovery has been sharing my experiences with others — here on this blog, and also with a neuropsych, whom I’ve been meeting with on a regular basis since 2008 or so. Just the process of sitting and talking with another human being who doesn’t judge me, who doesn’t make fun of me, who doesn’t roll their eyes and dismiss me… My neuropsych is the only person in my life who lets me just work through what I need to work through, without either jumping in and trying to save me from myself, or judging me and pushing me away.

They also have the same orientation as I — that change is possible, even inevitable, so why not make the most of it and really step up and take charge of the change.

Also writing on this blog and checking in regularly, has been a huge help. It just gets me out of my head, and every now and then a reader provides some support — either encouragement or a much-needed reality check about me feeling sorry for myself or being a whiner or some other valuable critique that gets me to stop and check my head, and adjust my approach in some way.

So yeah — hacking TBI. This is what I’ve been up to. Hacking, in the sense of

  • Identifying problems I need to solve — sleep/fatigue issues, anger issues, mood issues, sensory issues, attention/distraction issues, pain issues, relationship issues
  • Learning about the systems where the problems occur, inside my head — and whole body in fact… central nervous system, enteric nervous system, autonomic nervous system… lymphatic system… senses, impulses, instincts…
  • Letting the knowledge sink in, so it made sense to me and I could work with it.
  • Figuring out how I can tweak the system(s) to fix the problems — how I can do things a little differently, or take advantages of one of my systems to offset problems in another one.

A classic example of a TBI Hack that worked like magic was this:

Problem: Exploding with anger each morning when I would wake up and try to make breakfast, and I would drop things. I would explode with frustration when something simple would happen — like dropping a spoon or losing my grip on my coffee cup handle. My explosions were more internal than external (though I have been known to throw things, before I get my coffee in the morning). But they still tore the crap out of me, first thing in the morning. That’s a hell of a way to start the day.

System Issues: I learned that one of the after-effects of mild TBI is a change in “tonic arousal” — or general level of wakefulness in my brain. When I have low “tonic arousal” — my brain is slower to respond to things around me, because it’s less “awake”. When it’s less awake — especially in the morning before I have my coffee and get going — it’s more irritable and more reactive, and it’s harder for me to manage my moods. So, when I am waking up in the morning, I am naturally more inclined than most people to be grumpy, and to fly off the handle at little things.

Letting It All Sink In: Just knowing that it’s my injured/rewired brain — not some character defect — that’s making me more prone to fly off the handle, has been a huge weight off my shoulders. For the longest time, I thought it was a problem with ME. I thought that Icouldn’t handle sh*t. Icouldn’t figure out how to keep an even keel over such small little things as dropping a spoon or losing my grip on my coffee cup.

Tweaks and Fixes: As it turns out, just knowing that it was my injured brain, not my personal character, that was giving me problems helped me to better manage my state in the mornings. I would still lose my grip on things and still drop things, now and then, but when I did, I wouldn’t fly off the handle and explode, internally and externally. I would take a deep breath, let the the flood of anger and frustration wash out of me like a receding wave, and I would try again.

I found that being aware of my state of wakefulness let me make better choices about what to do. I slowed down, for one. I quit rushing around like a crazy person, first thing in the morning.

I discovered, too, that when I treated the situation like the challenge that it was — getting my breakfast without blowing up — and I applied effort to my morning routine, it made me more alert. The Give Back program says this — you have to realize that TBI recovery takes effort, and you have to apply yourself, not assume everything is going to work like it did before. Fairly recent research (2010) Perceived mental effort correlates with changes in tonic arousal during attentional tasks, says exactly that — when you perceive that you have to work harder at something, it increases your tonic arousal — and that’s exactly what I wanted to achieve.

I also came up with a checklist and a plan for how to do things. I didn’t take anything for granted, because, well, I couldn’t. I would forget things all the time, and it was very dispiriting. My checklist approach, listing each thing I needed to do, in its specific order was admittedly rudimentary and probably looked fairly remedial (well, it was, in the sense that it helped me remedy my situation), but it worked for me.  I stuck with my checklists for quite some time — probably at least a year. Maybe two. Until I didn’t need them anymore.

Bit by bit, I practiced and tweaked my morning routine so that eventually I could get through the morning without a blow-up inside my head.

This would have been impossible without the underlying knowledge about the systems at play. I had to understand the system, in order to tweak it.

And I had to understand there was a problem that needed to be solved.

So, as I approach the 10th anniversary of my latest TBI, this coming Thanksgiving, I think about how much things have changed for me — in difficult and good ways. All in all, the challenges I’ve faced have made me stronger and smarter in new and different ways. There are some things I’ve had to let go of — all the crazy busy-ness, for one, as well as going without sleep and driving myself from one project to the next. I’ve also parted ways with a lot of people. But those sacrifices have given me more rewards than cost, so it’s all been so worth it.

Sure, I would like to have never had to deal with this TBI stuff. But it’s been a fact of life for me, since I was a little kid. Better to deal with it.

And what better way to do it, than hacking into it, taking my life apart, and then putting it back together in all new ways?

The sun is up, and it’s looking like a beautiful day.

Onward.

 

 

A whole new exit strategy

It makes much more sense to me now

So, the reality of my exit is starting to sink in. I’ve been back and forth on this for quite some time, and it’s been weighing on my mind. I’ve been through the whole grieving process around it, and I’m finally at a place where I am feeling comfortable and good about things.

The one thing that has held me back from moving on has been the idea that I have to stay to follow through on a program I’m supposed to be putting in place. It’s a huge project with a ton of visibility, and I have NOT had the time to focus on it, because I’ve been “in the weeds” of day-to-day maintenance, and just keeping things going. I haven’t wanted to leave before my big project launches, because I didn’t want to abandon the project and have it fail.

But I realized yesterday that I actually have an alternative – a break from my dreaded plan of action. I’ve been thinking that I’ll need to stick around until July, when my big project rolls out. But now that I think about it, I may not need to stay even that long. There are some personnel shifts going on with my team, and my “official” manager is coming back from family leave in May, so the person who has been temporarily managing me will be freed up in May.

If I leave before July, they can take over my responsibilities and roll out the project that I’ve been putting together. They’re more suited to rolling it out, anyway. They’re much more social, much more connected, much better at connecting with people and making things happen within the organization.

Professionally, I need to stay on the technical side, and be more localized in my work… not be dragged all over creation in the company, networking with a gazillion different people.

How tiresome that is for me. But it really energizes my temporary boss.

And it would be a huge feather in their cap, to roll this out.

For me, tying myself and my future to this project is actually keeping me from getting on with my life and doing what I need to do. It’s not even the kind of work I want to be doing, long-term, so any more time and energy I invest in it will be wasted. My past experience will be wasted. My future prospects will be wasted. This project presents one problem after another for my career and my ability to earn a good living. Seriously, staying in this “pocket” of experience cuts back the amount of money I can make by tens of thousands of dollars.

And that’s no good.

It’s funny — as I’m re-learning my technical skills, I am realizing that I am actually better at programming than I was before. I realize that in the past, I thought I was really good, and that I understood everything… but I really didn’t. Looking back at the code I’ve written before (as I did last night), I see that my technique left a lot to be desired. But I never really understood it, because I was still working with the unaddressed issues of multiple mild traumatic brain injuries. All those concussions over the years really screwed up my thinking process and blinded me to my limitations.

Now, coming in with a new perspective, basically learning a lot of things from scratch, I realize just how much my thinking technique and my programming has actually improved.

And rather than needing to leave that line of work because of the different ways my brain works, finding the new and better ways of dealing with problem-solving has made me even better qualified to pursue it.

So… onward.

 

 

 

 

 

There are tools we can use to fix our brains

I’ve been using my Sunday to look back on the tools I’ve used over the past 7 years to address my long-standing TBI issues. I have been noticing a “dip” in my progress, that I’m not really happy about, and I realize that I’ve gotten a bit complacent and lackadaisical, which is hurting me and my quality of life.

Give Back Orlando’s TBI Self-Therapy Guide has been incredibly helpful to me, and although the support group no longer seems to exist, I still have the guides they made available online, and I make the available here on the site. The founder, Larry Schutz, Ph.D., is now working in the Los Angeles area, and I have heard good things about the results.

I have just posted the summary of “How to Fix Your Brain” under my “BI Recovery Tools” section of this site. I need to jump-start my active recovery again, now that the long winter is over, I’ve cleared the decks of some unnecessary projects, and I’m getting some energy back. This is just the opportunity to work on some of the points that have turned “sticky” for me again.

Check it out…

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…

Getting used to good

Coming out the other side

I’ve been under tremendous stress, for the past … oh, decade… dealing with all the TBI fallout — money problems, marriage problems, job issues… It has been one long slog through one problem after another. Getting hauled into court. Being threatened by all sorts of folks. Bouncing from one job to another, without any sense for what direction I wanted to go… and losing it big-time with people all around me.

I swear, I have been pounded down, day after day, week after week, month after month, year after year… for at least the past 10 years, and it has taken a toll. For sure, it has taken a toll.

But now I’m starting to come out of the woods. I can read again. I can joke again. My thinking is clearer and better organized than it’s been in as long as I can remember. It’s pretty friggin’ amazing.

Now with this newfound space to move in, I have an abundance of energy. And there’s a bit of a danger in that. Because I am so used to pushing through when I had nothing left, that I’m still pushing through, even when I have resources. And as it turns out, my resources are not infinite, my energy is not geysering up from a bottomless well, and I have a real knack at wiping myself out.

Lesson learned. Dude. Chill.

And I look around me, now, at everything my life has turned into, over the past ten years. I look at all the things I was doing with myself before the last ten years. And the closer I look, the more I realize how much it pulled me down. I can see it all from the vantage point of someone who has been shot out the other end of the cosmic blowhole like one of those surfers who gets pushed on through the pipe by the sheer force of wind and wave, and what I see is, well, telling.

And I can’t believe it’s taken me nearly 50 years go get it.

Well, in all fairness, let’s forget about the past 10, because I’ve been half out of my mind for most of that time, and I haven’t been myself — at least, not a self I would recognize as “me”.

Anyway, what I see is someone who has spent a ton of time and energy just scrambling to tread water. I haven’t even been swimming in any one direction, let alone surfing anywhere fast. I’ve been treading water double-time, because all around me nothing made any sense, and my brain was playing tricks on me, every time I turned around.  Hell, it was playing tricks even before I turned around. I didn’t have to do anything or even move a muscle, for my brain to play tricks on me.

And it effin’ sucked. I mean, it blew chunks like nobody’s business.

And now I’m tired. Worn. Out. And all the stuff that I thought meant so much to me over the years… a whole hell of a lot of it was just me trying to direct my anxiety, my angst, my nervous energy, my craziness, in some direction that wouldn’t kill me. I was so driven, so propelled, so utterly possessed by a horde of demons that nobody could see — sensory issues, noise and light sensitivity, tactile defensiveness, confusion, frustration, never being able to get my words to say exactly what was in my head, being constantly misinterpreted — both myself and my words — and scrambling… always scrambling… just to keep up.

Of course, how would anyone ever know that? After all, I not only could pass as normal (when I was anything but — I was way ahead of normal), but I could also hide what was going on with me, because showing it meant ridicule and ostracism and being treated like I just wasn’t trying hard enough.

That’s no way to live, so I’ve just covered it up for years. All my life, really. It wasn’t worth it, to let on to others what was going on inside of me.

And it took a hell of a lot of time and energy to keep going under those conditions.

The thing was, I was so busy scrambling, so frantically treading water, trying to maintain some semblance of normalcy, that the fear and anxiety fueled me — and it felt like I just had a lot of energy. For everything.

Now, though, things are different. I’m coming out of the “pipe” of my crashing wave of a life, and I can feel myself coming into the clear. And with that clearing, comes a ton of energy and the ability to do things I never thought would be possible.

So, I want to do them all. And I try to do them all. Because I’ve been blocked and stopped my entire life from doing the things I wanted to do, and now that I have the capacity and the capability… well, I’m overdoing it a bit.

Speaking of overdoing it, I am about wiped out from writing this. I’ve had a long day. I’ve had a long week. I am beat. And I need to sleep.

So, I shall.

Onward.

Training my brain to choose

I talked before about how sitting za-zen helps me to physically wake up. I can’t sit for very long before I go to sleep, because it wakes me up too much. So, I sit in the mornings – and I’m going to try to sit in the afternoons, when I have a few minutes. I just set up a reminder on my calendar to do it every day at 3 p.m., and we’ll see how that goes.

Now, waking myself up is fine. But in fact, for me, sitting za-zen is about more than that. It’s actually about training myself to choose what kind of experience I want to have — if I want to give in to fatigue and frustration, or if I want to dig down and find the resources to deal better with my situation. I am actually able to change my frame of mind in different circumstances — that’s what I do when I interact with certain types of people. I suffer from terrible dread in so many situations, but I “buck up” and decide I’m going to have a different experience that being full of dread and anxiety, and when I do that, it actually works. I forget about my fears and dive in… and almost always, the result is a good one

Sitting za-zen has given this to me. That’s what it’s about for me — choosing the experiences that I want to have.

It’s very much about learning to choose my reactions to situations… training myself to wake myself up as needed, or to calm myself down if necessary. Sitting with focus demands that I pay close, sustained attention to some very simple things — my breathing and my posture. It trains me to pay attention to how I’m feeling in my body, so my posture is always good. It also trains my attention on my breathing, as I count my breaths and make sure I am breathing at a constant rate. It trains me to note any ideas and thoughts that are flit-flitting through my head, which are taking my focus away from my breathing and my posture.

And it’s hard. It’s quite demanding. It’s so demanding, that it’s rare that I can count 17 full cycles of breath without some interference from thoughts and distractions. I do my best, but it is incredibly difficult at times, to just keep my attention trained on my posture and breathing. My posture is not typically za-zen — I can’t sit cross-legged, because it is too painful and I have back and knee problems, so I generally sit up in a chair. My breathing is steady and balanced — five slow breaths in, a slight pause, then five slow breaths out, followed by another slight pause. Many’s the time when I get to 7 full breath cycles, and then my mind starts to wander.

But after working with this for many years — on and off — I am doing much better about not losing track of the number of breaths, and I’m not as “absent” as I used to get, when I would sit and breathe.

It turns out that this kind of practice is incredibly good for the brain — it decreases the activity which is associated with falling asleep and actually wakes you up. So, contrary to a lot of beliefs that meditation is all about relaxing and chilling out, according to the Awakening Is Not A Metaphor study:

“… the result (of meditation) is not a calming in the direction of relaxation/sleep, but rather a move in the opposite direction: toward an increased alertness and vigilance that counteracts mental laxity and sleepiness.” (p. 6 of 18 in the pdf of the study)

The study talks in depth about it, listing a number of examples where meditation training of one kind or another improved alertness, reduced fatigue, and had positive after-effects for months after a single training session. From personal experience, I can testify that when I sit za-zen regularly, I feel better, I act better, and I’m able to handle what life throws at me, even in very challenging circumstances. I’m training myself to decide — for myself — what my reactions to life are going to be, and I’m reducing my overall reactivity. I’m teaching my brain to not just run in every different direction, following whatever shiny object it might find, and I’m training my mind to not chase after my brain when it starts acting like a monkey running off into the forest with my car keys.

This is such an important part of my TBI recovery — it really supports and strengthens my ability to choose for myself how I will behave, how I will think, how I will react. That choice can mean the difference between saying and doing things to others I will regret and not be able to take back, and keeping my relationships neutral and healthy. It can mean the difference between getting into hot water with the cops and getting let go with a warning, or getting sent to jail. It can mean the difference between becoming angry and letting it go, or letting the rage take hold of me to the point where I break something or hurt someone.

It literally can make all the difference between a temporary upheaval — a speed bump in the road of my life — and a semi-permanent deep-sh*t situation that I have to then manage and smooth over and fix, taking tons of time out of my regular life to fix what I’ve broken.

So, sitting za-zen is more than just a way to pass the time. It’s an important part of my everyday life, that helps me not only feel better, but also helps me act and overall function better. It wakes me up. Because I’m training my brain to wake up. And I’m teaching my mind to react the way IT wants to, not the way others expect or try to force it to.