Crushing. Just crushing. And yet…

The week ahead of me is one of those one-foot-in-front-of-the-other types of weeks. I can’t think too much about things, because inside my head, it’s a swirling mass of panic, rage, fear, anxiety, frustration, and a whole lot of other stuff that has no business coming to the surface.

I’m working my ass off, keeping positive and moving forward. It is a herculean effort, and when I think about how f*cking hard I have to work, to keep myself on track, I’m actually really proud of myself.

Because how things are on the outside is nothing like how they are on the inside.

And to all appearances, I’m succeeding, I’m doing well, I’m holding my act together.

While inside, I’m absolutely dying — or bordering on aggressive rage.

One thing that TBI has taught me, is how to not get sucked into the turmoil that seethes beneath the surface. There is *always* turmoil beneath the surface with me. I walk around looking quite calm and collected, while inside I’m anything but that. I know the chaos is there. It’s like having a Tasmanian devil creature living in a sound-proofed back room of my house. From the street, you can’t see it, you can’t hear it, and you’d never know it’s there. But inside my house, I know it’s there. And even though I can’t hear it tearing around shrieking and howling and slamming into the walls, I can still feel the thud-thud-thud of the creature throwing itself around.

It’s there. I’m not sure it’s every going to go away. And yet, I don’t have to let it out of its room. I don’t have to let it into the rest of the house. I can live my life, sliding food under the door now and then to keep it satiated and a little calmed down. I can go about my business, taking care of that side of me, to make sure it doesn’t get too wild, too out of control. I know it’s there. I’m not sure it’s ever going to go away. The confusion, frustration, fear, anxiety, panic, anger…

Whatever. I have a life to live, and I have tools in place to keep me balanced and steady, no matter what.

In a way, learning to manage my own internal state is helping me manage my external state. It’s pretty depressing, sometimes, thinking that this crap may never go away. But when does it ever — for anyone? We all have to deal with it. We all have to handle it.

It’s crushing. It’s demanding. It sometimes feels like too much.

Then I realize there’s more to the picture. There’s the amazingly beautiful weather today. There’s the wonderful day I spent with my spouse, yesterday. There’s the camaraderie of my coworkers waiting for me. There’s the calm I feel as I settle in for a good night’s sleep on the weekend, when I don’t need to set my alarm. There’s all the amazing beauty and inspiration I find from so much of life.

Yes, it can be crushing. And yet… there is more.

I didn’t fail. I just got tired.

So much depends on your outlook

I had a revelation this morning, as I was waking up. In the space of a few seconds, it turned an imagined failure into a chance for long-term success.

It was the realization that when I started to lose my temper with my spouse last night, it wasn’t a sign that I was failing at my attempts to be more level-headed and calm, no matter what the situation. It was a clear sign that I was tired, and that my brain needed sleep.

I have been working on being more level-headed — no matter what the situation. This is a lifelong pursuit, actually. I saw the need for it, when I was a teenager and a young adult… as an adult in the working world… and it continues to be important to me. It’s not that I want everything to be perfect for me all the time and give me no trouble. What I want, is to be able to handle my circumstances, be okay with them (within reason), and make the best of any situation’s opportunities, no matter now “bad” it may look at the time.

I have had some good success with this approach over the years. After all, I have seen the ill-effects NOT having a level head in challenging circumstances, and the results are rarely pretty. I have had plenty of opportunity to witness this in the people around me — in my family, especially, when my parents could not hold it together with one of my “problematic” (that is — drug-addicted, alcoholic, sleeping-with-anything-that-moved, drug-dealing) siblings. It was bad enough that my sibling had all those problems (which were signs of something far deeper going on with them). But my parents could not maintain their composure or clarity of thought when it came to my sibling, so that made a bad situation even worse.

I’m not judging my parents — they were not equipped to handle it, and we lived in an area where any problem with kids was a reflection on the parents, so they went from being respected members of society to being “those people” who everybody handled very gingerly.

Anyway, I’ve seen many examples in my own life, where keeping a level head and a calm demeanor helped me through tough times. I actually credit my many TBIs (I’ve had 9+) with helping me with this, because they slowed down my processing speed. When your processing speed is slowed down, it makes it pretty difficult to get on the same wavelength with everybody else… and in case you haven’t noticed, being on the same wavelength as everybody else leaves a lot to be desired.

Everybody gets so worked up over things. But when you’re not thinking as quickly as everyone else, you can’t jump to the same conclusions and get to those snap judgments that can send you careening into HOLY SH*T WHAT THE F*CK land. Everybody else is freaking out — oftentimes about something that isn’t worth freaking out about — and you’re still trying to figure out what just happened…

So, if you think about it, slower processing speed isn’t always a bad thing. And equanimity… peace of mind… level-headedness in the face of a crisis is a definite advantage. Especially when everybody else’s “normal-fast” thinking is vectoring off in a really unproductive direction.

Anyway, that’s one half of the story. The other half of it is less cheery — that’s the aspect of my thinking that is WAY more reactive than others’. It’s the instant-freak-out part of my experience that has made me nuts for years. At an instant’s notice, I’ll suddenly FREAK OUT over something. It can be a dropped spoon, or a missed channel that I’m trying to change with the clicker, or something my spouse says or does that rubs me the wrong way.

When things go haywire in my head, they go really haywire. There’s no middle ground. Everything goes nuts. I know I’m being unreasonable, I know I’m being crazy, I know there is no logical reason for me to be freaking out, but it’s happening anyway. And it’s never good for anyone. I’ve lost more relationships than I can say, because of this. That includes a really good job I lost in 2005 after my TBI in 2004.

People are afraid of me, when I start to get agitated and aggressive — which may have to do with me, or may have to do with them. I don’t want to give anyone any reason to be afraid of me. It’s counter-productive. And it hurts everyone involved.

So, there’s all the more reason to keep tabs on myself and foster a calm demeanor, a cool head, and a self-possessed state of mind. And with that goal in mind, I have pursued a number of different practices and philosophies that might help me with that. I have worked on practices that emphasize acceptance, calmness, not reacting to things around me, and philosophies that teach about how transitory life is, and how important it is for us to understand what we can and cannot change, and not make ourselves nuts trying to alter things that can’t be changed.

Like the serenity prayer:

God, grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.

This has been a very powerful concept in my life, and I have it displayed in my kitchen where I will see it each morning when I get up and make my coffee.

Along the way, I have had many surges in interest in deepening this practice — in really getting to a place where I can make peace with the things I cannot change, and make the most of the opportunities that are hidden there. I’m a big believer that some of our worst hurdles and challenges offer us the greatest rewards — and when we resist those challenges, we miss out on the chance to become bigger and better than ever before.

Some things I can accept and work with — political changes, cultural changes, relocations from one area to the next, and small-scale changes at work. Other changes I have a harder time with — job changes, especially. The ones that make me the craziest are the ones I feel like I cannot understand or control — or that go off in a direction that is completely different from the direction I see myself headed.

Other things I cannot seem to accept, are the foolishness of others — the stinkin’ thinkin’ that my spouse indulges in, their constant anxiety, their devotion to drama, their bad habit of telling everyone exactly what they want to hear instead of the constructive truth. I have trouble with the attitudes of people at work, who can be cliquish and juvenile. I have trouble with the judgment of Management at work, when their decisions seem counter-productive and get in the way of us doing our work. My siblings also depress the sh*t out of me, with their choices and their prejudices and their holier-than-thou attitude. My parents are a little easier to deal with, because they are many hours away, and I don’t see them that often.

It’s the people who are closest to me, who I have the greatest investment in, that get me with their unhealthy habits of thought and action, their outlooks, their attitudes, and their behavior that seems to serve no useful purpose, other than to make them feel good about themselves — at the expense of everyone else.

The thing is, their behaviors and beliefs and actions have almost nothing to do with me. Even my spouse’s bad habits have more to do with them, than with me — no matter how much they may blame me for their anxiety. I am making myself unhappy over things that are far beyond my control, and it’s not helping me at all.

So, there is all the more incentive for me to calm myself down, not react to what they are doing, and step back and look at them and everything from a distance.

I have found some philosophies and outlooks that can help me do that, and I have pursued them eagerly, on and off, over the years. The thing is, I get to a certain point, then everything falls apart. My equanimity dissolves. I melt down, inside my head and heart. My temper explodes. And I end up feeling worse off than when I started. I feel like I’m back to Square 1, without having made any progress at all.

But in fact, I have made progress. My meltdowns and explosions do not mean that I have utterly failed at learning a new way of thinking and being and relating to others. They do mean that my brain has been working hard, so it is tired. And I need to rest it.

Because changing yourself and your brain and your patterns of thought and action and attitude is hard work. It doesn’t happen overnight. And the fact that I am getting frayed and losing it, actually means that I am making progress — I just need to take a break, rest up, learn what I can about what sets me off, and resume learning again, once I am rested.

This realization is just what I’ve been needing — for a long, long time. Getting frayed at 10 p.m. over someone being a pain in my ass is NOT a sign that I’m failing. It’s a sign that I’ve been working hard all day at changing my mind and my brain, and that it’s time to rest. It’s not a condemnation — it’s a diagnostic tool. And far from being an indication of my inferiority, it’s evidence that I’m actually making progress.

The simple fact is, I’m a brain-injured human being. If you think about it, there are a lot of people who are injured in one way or another, and we are all working our way through the maze called life, trying to find a better way to live. And because of my injuries, because of my history of experiences, my individual makeup, and all the different things that have made me what I am today, I have certain limitations I need to be mindful of and accommodate, so I can work around them and not let them get to me.

Fatigue and the irritability that comes from being tired are a couple of those limitations. So is:

  • a sharp tongue — over little things
  • a hot temper — at an instant’s notice
  • slower processing speed than one would expect
  • the almost constant pain that I’ve become resigned to living with, the rest of my born days
  • perpetual, never-ending tinnitus
  • light-sensitivity
  • noise-sensitivity

And so on.

It’s not that my life is awful. It’s pretty sweet, to tell the truth. I just need to be aware of these issues, not forget them — or when I do forget them, find a way to remember that the things I’m doing and saying are about my brain injury, NOT about my character.

So, there is hope. There always is, so long as I don’t give up.

And speaking of not giving up, I’m going to get ready for work and get into my day, knowing that I didn’t fail last night, when I got cross with my spouse. I was just tired, and no animals were hurt in the filming of that movie.

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.”

Breaking my fast

I get to eat the good stuff again

I had a good fasting day yesterday. I managed to get through the entire day without blowing up. I got a little frayed, at a couple points, and I got pretty revved over some things. But then when I stepped away from the situations, I was able to calm myself down and chill.

Sometimes, that’s all it takes for me — removing myself from the tense situation (if I can) and chilling out. I check Facebook or look at my email or I read one of the books I’m working on.

Part of my irritability was fatigue-related. I only got 5-1/2 hours of sleep the night before. I just woke up at 5:30 and I was awake. I didn’t feel really tired or out of it. I was just awake. So, I got up and got on with my day. I lay down later and took what was supposed to be a 1-1/2 hour nap, but I slept through my alarm and my spouse woke me up an hour later. So, I added 2-1/2 hours to my sleep quota. And I even got to bed before midnight last night. too.

Breaking my fast was interesting. I was starving by the time I had supper at 7 p.m., but I didn’t go wild with stuffing myself with all sorts of junk. I had a decent sized dinner with meat and starch and vegetables, then I had a piece of chocolate, a natural fruit popsicle, and some frozen cherries. I’m finding that frozen fruit really does the trick for me, as a snack. It’s not full of processed sugar, and since it’s frozen, it takes a little “doing” to eat it. It’s not like I’m just pushing cheap carbs into my face. I’m actually consciously having a snack — that starts out too cold to eat (I’m very sensitive to cold)… then it melts gradually, and I can slowly eat it. Not only does the slow pace curb my hunger, but it also gives me something to do with myself and my attention while I’m snacking.

I did quite well with breaking my fast, and I’m very happy about it. I’m even happier that I didn’t spend the day in emotional turmoil, the way I did, last time I fasted. The last time I fasted, I felt like a raving lunatic all day, and all I could think about was when I was going to get to eat next.

Yesterday, though, I kept it together pretty well. And I had a lot of energy. It was intense, focused energy that makes me feel a bit like the posters I see of Bruce Lee — coiled, intent, and ready to spring into action. This kind of energy makes my spouse nervous, and they switch to “high alert” when I get that way — even if I’m not going to do anything frightening, they are still on alert around me.

I probably need to learn how to manage my energy levels when they are that high, and that intense. I know I can get pretty revved at times, and I don’t always handle myself well. I fly off the handle, I say and do things that I regret later. Fortunately, I didn’t act on anything yesterday.

And that’s good. Because last night there was a situation that could have gotten out of hand, had I given in to the impulse that came up in me. I was in heavy rush-hour traffic, and some a-hole was riding my ass for a ways. I pulled into the right lane to let them pass, and they pulled up beside me. Then they came over on me, like the were trying to push me off the road. I honked and fell back and let them get ahead of me, and I put my brights on, so they would get the message that I was not pleased. And then they turned off to the right into a parking lot.

At the time, I wanted to follow them into the parking lot, pull out my jack, and break out their headlights, smash their windshield and beat them senseless. Insane, right? Well, it’s one thing to think it — lots of people do. But last night, I did NOT do that. I wasn’t even close to doing it, as I just let that thought come up… and then disappear. I did not follow the thought, and I did not follow that person into the parking lot and I did NOT assault them. Not even close. The idea came up, and I let it go.

This is progress. Just a few weeks ago, I got into a verbal confrontation with a police officer for legitimately pulling me over. They had every right to pull me over, and they were actually really decent with me, giving me just a verbal warning. This time, I had every right to be angered by the behavior of the other driver, but I did not put myself into a situation that could have gone really badly. I didn’t even take that thought all that seriously. It’s just what came to mind. And it went away because I didn’t give it any more thought. I just let it come up… and I let it go.

After all, who knows why that person was behaving the way they were? Maybe they were an a-hole, or maybe they were a frightened parent, rushing to their sick child… or a newly single parent whose own parents were not well, and who needed to catch a flight out of town to get to their bedside. Maybe they had a really bad day at work and weren’t thinking properly. Maybe they had been drinking and were dangerous, themself. Maybe they were just intensely distracted, being on the phone and not paying attention to what was going on around them. There are a million different explanations why they might have acted as they did. But I picked the worst case scenario and could have gone for it, had I actually held onto that idea and focused on it and made it into a “thing”.

Instead, I was able to just watch it come up, and let it go… And away it went. So, here I am, a free person, walking around without having to post bail. :) As Martha Stewart would say, “That’s a good thing.”

This is where the mindfulness / sitting / za-zen / breathing meditation stuff comes in handy. Also the exercise, which helps me direct my energy somewhere positive, instead of getting “backed up” to where it’s making me crazy and dangerous. Meditation and weight training trains my system to not follow every single impulse that comes up. It keeps me focused and grounded and level-headed. That keeps me out of trouble. It keeps me out of jail. And that’s a good thing.

The last thing I need, is for my impulses to land me in trouble with the law — and ruin the life of someone who may have had a family emergency they needed to handle. That’s not how I want to start the year. 2014 needs to start on a good note, and me not giving into that road rage was an excellent start.

Onward.

All that I have gained

What was … and what will be…

Happy New Year everyone! I am feeling quite positive about this coming year. 2013 was a bear — for me, as well as many others I know. I’m none too sad to see it go, and after that “inoculation” experience with all the crappiest of crappy crap that came down the pike, I feel like I’ve developed sufficient scar tissue to move on.

Yesterday I had to work again — I used up one of my year-end vacation days to run errands, a few weeks back. So, it was a mini practice ramp-up for the new year. It was pretty good. I got to just settle in and take care of some things, close down a handful of pending items, and get a jump on the next year’s activities.

Most of my work time yesterday was spent in planning — thinking through what needs to be done, and how it needs to get done — so that when I actually can do it, I don’t have to think too much about it, and I can just go. I hate getting stuck in that analysis paralysis situation — taking time off busy work to really strategize and plan my approach helps me avoid that pitfall.

I spent a fair amount of time, over the past few days, thinking about my past years of TBI recovery. I have been through a number of distinct cycles after my TBI at the end of 2004 (holy smokes has it been almost 10 years?!):

  1. Dissolution and Oblivion — things unraveled and I had no clue that anything was actually wrong in my life. Blow-ups, melt-downs, increasing forgetfulness and volatility, worsening physical fitness and balance, poor financial decisions, difficulties sleeping and eating properly…  things just dissolved around me, and I did not perceive that it was so. As far as I was concerned, it was all because of things other people did, and my reactions to what they did were justifiable, because, well, there was nothing at all wrong with me.
  2. Dawning Realization — when I realized that my money had disappeared and I didn’t understand why, it sank in that something was “up” with me. Oddly, none of the other signs registered with me. My realization was more about money in the immediate present, and also about all the difficulties I’d had as a regularly concussed kid, growing up with multiple TBIs. All of a sudden, certain things seemed quite off, and I knew I needed help.
  3. The Quest for Answers — I embarked on a full-throttle quest for answers to what was going on with me. I didn’t even know exactly what was “up” — just that certain things were not right, and I had to figure it out, or I was going to lose everything. I kept voluminous notes about my life experience, I sought out every conceivable avenue for learning about and understanding what was happening to me. I scoured the internet. I read medical study after medical study. I looked for websites. I plumbed the depths of my local library system. I collected binders full of notes about concussion and TBI and my own personal experience, and I made daily lists of all my symptoms, what I was doing about them, and whether or not things worked for me. I watched for patterns in my experience, and I spared no detail in describing my life, from the inside-out. I went down a lot of dead-ends, and I incidentally decided that I suffered from a variety of disorders, based on passing input from numerous people, which made me look like a raving lunatic to the professionals to whom I turned for help. I endured a number of truly humiliating encounters with suspicious experts, who could have really done me harm, had I given them the opportunity. This was both the most intense and the most frustrating and anxiety-producing part of the process — but it kept me going, because I had a mission and a purpose. And I was not going to take “no” for an answer, till I found the help I needed.
  4. Building a Foundation — when I finally found a neuropsych who could help me, I had a neuropsychological assessment, which was a several-day affair that tested my memory, processing speed, and a number of other aspects of my functioning and behavior. That showed both of us what was really going on with me, and it pointed towards the things that could be addressed. It also showed what was NOT wrong with me, and it steered me away from this wholesale decision that I was 100% broken and had more problems than I knew what to do with. It was about finding out both what was wrong and what wasn’t, and figuring out what direction to go from there.
  5. The path to normalcy — I’ve never actually been “normal” (that would be boring!), so this part of the process was about just getting some stability back into my life. I had jumped ship on a number of jobs, since my TBI in 2004, and my years of stable employment for 10 years prior to that was in serious jeopardy, by the time I started working with my neuropsych. I had taken a string of short-term assignments, and I had ditched a permanent job after just three months of discomfort, and none of that helped my case, when I went job-searching. Over the course of the first few years working with them, I went through several more job changes, but I developed a good routine for my days, and I made some significant improvements to my life that got me out of constant fight-flight mode. Getting normalized meant getting off the roller-coaster of reacting to every single emotion that came up, and learning to make choices based on my own wishes and plans, rather than as a reaction to everything that (I thought) was going on around me.
  6. Real progress — this started to happen, as my life became normalized. The wild ideas about all the different syndromes I had, subsided, and I was able to see beyond the immediate reactions to events taking place in front of me. I was able to better think in terms of what I wanted my life to be like, rather than how I didn’t want it to be, and I was able to take real, substantial steps to making my plans a reality. I was able to land — and keep — two good jobs that looked good on my resume, and I was able to leave the first one for the second because of a legitimate, publicly defensible reason, rather than just panic that I had to excuse away to recruiters and friends and family. It has not been easy… there have been a number of plateaus, when I felt like I wasn’t making any progress at all… and it’s been quite a challenge to keep steady in the midst of all the storms. But I feel now like I have come through to the other side in a big way, and I’m able to hold my own, no matter what the outer circumstances around me. This is huge. After a lifetime of being pushed and pulled by every little wind, after being beaten down by one defeat after another, and deciding that there was no hope for me, I can now hold my head up and stand tall, knowing that I do in fact have the inner resources to withstand the storms of life — without becoming a danger to myself and those around me.

So, that’s where I am today. Standing tall on this first day of 2014, grateful for all the help I have received over the past years. There have been a lot of low points, and sometimes I felt like I was never going to get out of that dark abyss, but I have persevered, and I have come through. The hard times, the boring times (probably even harder than the hard times), the exciting times, the mellow times, the exhausting times… it’s all been a part of the whole picture.

Yes, I’ve been sleep-deprived and anxious. Yes, I’ve been in a lot of pain. Yes, I’ve been angry and raging. Yes, I’ve had run-ins with the police and other authority figures. Yes, I’ve gotten in trouble, and I’ve covered for myself — which has made it harder to get me the help I need. Yes, I’ve been really confused and unable to clearly formulate real questions to truly understand my situation. Yes, I’ve been down one dead-end after another, and I’ve had some really bad experiences along the way.

But I’m still here. And for all the bad times, there have been good ones, as well. I can now leave my house and walk for hours in the forest without losing it and running home in a quivering mess of tearful anxiety. I can hold extended conversations with people and understand what people are saying to me — and ask for clarification when I need it. I can spend a relaxing week with my spouse without both of us losing it. I can hold down a job and stay steady enough to let people see my true worth over time. And whatever comes my way, I can break it down into manageable pieces to handle one at a time.

Now that I look back over the years, I can see how beneficial it has all been, even if it has not been the easiest or most pleasant at times. The hardest lessons were the ones most worth learning. And they are the ones that will stick with me the most.

And looking forward to the new year — and all the years beyond — I feel a great deal of hope. There are many, many individuals suffering on a daily basis from concussion and traumatic brain injury, as well as acquired brain injuries like stroke and viruses. Along with it, comes PTSD, all too often. There is so much suffering, and it too often takes lives. And yet, I do believe there is hope. For all of us. I know there is for me, and I hope I can pass along some of that to others. Maybe someone in pain will find their way to this blog and find their own hope. Maybe someone in need of answers — or just hearing what another person is experiencing — will find their way here and get a little of what they need. Maybe someone who knows someone who is struggling, will pass along this blog to them, so they can find a kindred spirit.

That’s about the best that I can ask for — that my life stays real, and that I can keep on sharing my own experiences…. and hope that good will come out of it all.

And now, for 2014… Onward!

Six years and counting

How time flies…

Today is the six year anniversary of this blog. To say that it has changed my life for the better would be an understatement.

Six years ago, I was at my wits’ end, unable to make sense of my life or understand why everything that once was so familiar, now seemed so strange to me. I was in a pattern of learned helplessness that kept me stuck in behaviors and choices that sabotaged me on a regular basis.

I was convinced that I could not understand what people were saying to me — and never would.

I was convinced that I was a total loser who was good for nothing.

I was battling difficulties with balance and distractability and agitation and irritability and aggression that shredded relationships and put my marriage in dire danger.

I could not read and comprehend what I’d read, and I couldn’t remember a plot line of a book from one page to the next.

I had become slightly dyslexic, getting letters turned around when I wrote.

And I could not keep a job. My life was a shambles, my money was disappearing on a regular basis, and people took advantage of me – left and right – because they could “smell” that I was an easy mark.

To say that this has changed would be an understatement.

I now know how to listen so I can understand what people were saying to me — and ask for clarification when I need it.

I know that I am NOT a total loser who is good for nothing. I have a lot to offer, and I have what I would describe as a very successful life.

I know how to handle my difficulties with balance, I understand what exacerbates my distractability and agitation and irritability and aggression, and I know how to head off problems before they trash my relationships and threaten my marriage.

I can now read and comprehend what I’ve read, and I can remember a plot line of a book from one page to the next.

I am still slightly dyslexic, getting letters turned around when I wrote, but I don’t let that stop me or hold me back. I just make the corrections and move on.

I can keep a job. In fact, I have won awards at my job. My life is no longer a shambles, my money situation is turned around and I have much better handle on things, and I am learning how to change my behavior and outlook so that people cannot take easy advantage of me – because I am learning how to be a “hard” mark.

It’s pretty amazing, when I think about it. And I’m profoundly grateful for all the good I’ve received in the course of the past six years, as I’ve pursued this journey of TBI recovery.

Many of you have helped me a great deal – both by supporting me, sharing your own stories, or calling “B.S.” on me, when I was being ridiculous. I have learned so much from you, as well as from my own life, and I have been truly blessed by this whole blogging process.

So, that being said, thank you all for your contributions and continued support here. I wish you all the very best of New Years — and an amazing year to come.

Onward!

Steady as she goes…

It’s not always going to be smooth sailing

I had a bit of a revelation, this morning. I’ve had a pretty rough 48 hours, and it’s gotten me thinking that maybe I should take my neuropsych up on their offer to help me find a medication that will take the edge off my irritability, so my temper doesn’t flare so violently.

They say that they can manage the dosage so I will have very few side-effects, which I’m taking with a grain of salt, because I have never taken a prescription medication that didn’t have side-effects, and I’ve had some pretty hair experiences.

The thing that really worries me about using meds to take the edge off my experience, is that I may become dependent on them, and if by some chance they get taken away, I forget to take them, or I (like so many other people) decide I really don’t want to be on them anymore, then I will crash even harder, and some serious damage will get done, not only to myself but to others around me. I have such intense “fits” of rage, that it really frightens me after the fact.

While I am in the midst of it, I do not care. There is a coldness to me that doesn’t care who gets hurt or how it affects anyone. I have no empathy, I have no compassion, I have no patience, and I have come close to breaking things in my home (where I literally cannot afford to break things, because I don’t have the money to replace them). Over the past couple of years, things have gotten worse with me, and my outbursts are becoming even more violent than before.

Maybe it’s me, or maybe it’s my spouse, who gets so afraid. I think it may be me. I will need to check with my spouse on this, to see what they think. Again, I need to take what they say with a grain of salt, because it doesn’t take much to frighten them.

I do know that I have had several pretty intense blow-ups in the past weeks, and I had a run-in with the police that could have ended badly for me, had I followed through on what I intended to do — actually seek out and verbally challenge an officer who pulled me over one night for a broken headlight, after they gave me a warning and sent me on my way. I was going to find them and give them a piece of my mind, later on that night. Crazy, right? Well, it seemed like a good idea to me at the time. Fortunately, I did not do it. Or I might be writing this from jail.

Anyway, all this has got me thinking very seriously about how I handle my stress and the situations in my life. I am concerned that I may start acting out at work, with the increased pressures of my position in the new organization. I am concerned that I may do the same sorts of blow-ups that I have at home — that cost me my job in the past, and it will not help my current situation one bit. I have mentioned some things to my neuropsych — and yes, they have suggested a medication to help with the moderation of my agitation.

Once again, I’m concerned that I will become dependent on this for my well-being, and that gives a pill and the medical establishment control over me, which I do not want. I understand that many people are helped by medications. I have no problem with others taking them. I just feel very vulnerable about the thought of doing it myself.

So, I need to find a way to navigate these stormy seas, and better manage my stress and my behavioral responses to pressure. It does no one any good for me to assault people or tangle with the cops. It achieves nothing. It seems like such a good idea at the time. Just a relief — a release… but it can end up with me in some pretty hot water. I need to find a way to #1 keep my stress levels manageable, and #2 keep from letting every internal storm carry me away.

I have done meditation in the past, and I have done sitting practices that helped me keep my fight-flight balanced. I haven’t done that in a while, and I’m sure that’s not helping me. So, I need to get back to that regularly.

In the moment, too, I need to have a coping mechanism that will chill me out and keep me from going overboard. I think of a ship at sea… and I think about the sailors aboard who are navigating. Just steer the ship, keep the sails trimmed, and just keep on board… and hopefully the storm will eventually pass. There is nothing the sailors can do about the storm — it is just there. They simply have to keep steady as she goes, and take care of the basics, to keep the ship righted.

That’s what I need to do for myself – just keep my ship from capsizing. Focus on the essentials, the basics, and keep going. Just keep going. Don’t get worked up over the fact that a storm has arisen — just accept that it has, and keep my “ship” from capsizing due to my own emotional upheaval.

See, this is the thing — emotional volatility (or lability) just comes up. It just happens, as a result of many factors, some of which can be controlled, others of which not so much. If I can see the inner storms that wrack me and rake me over the coals, as something outside myself that just happens — as a storm that comes up as I’m sailing through my life — that makes it less about me being damaged beyond repair and makes it about me dealing with an external force — like thunder, lightning, high winds, high seas — to keep myself afloat.

When I have an image in mind, it helps. Like when I was going to take on that cop — I was this close to pulling into the parking lot where they were lying in wait for more motorists like myself, when I had a visual of a video of one of those “world’s dumbest criminals” who was acting like a complete mad person with a copy — on camera. I watch those “world’s dumbest” shows for a laugh — and this time it probably saved my ass, because I had a very clear sense that if I did take on that cop, I would look a lot like that idiot I was laughing at, not very long ago.

So yeah — visuals. Video clips in my head. I also need to break out my old copy of “Two Years Before The Mast”… or get the DVD of “Captains Courageous” from the library… and get some of that imagery in my head.

Because it’s no good for me to hurt the people I love, or end up in jail, or trash my home, because some storm comes up.

And I don’t want to take a pill to stop this.

 

 

 

 

Recovery Day… #2

Watch out… a “day off” doesn’t always mean good things are going to happen

So, yesterday I had a recovery day from my week before. More or less. I did some work in the morning and I took it easy in the afternoon and evening. I even got a nap and a walk in. The weird thing is, later in the evening when things were winding down, I had a melt-down and went off on my spouse over some stupid sh*t that didn’t amount to much of anything. And it was partly a misunderstanding, anyway.

It’s like someone put a match to tinder, and I was off — flipping out and really reaming them in ways that only I can do. Of course, it doesn’t help that my spouse has a bunch of issues of their own, and those issues come front and center whenever I start to get edgy. They grew up in a very edgy household, so whenever I get “that way”, all their old memories kick in, the old neurological wiring starts to fire, and they start interacting with me like I’m their abusive parent. It escalates rapidly, and all the while, I’m thinking, “I’ve got to stop this – I’ve got to stop this – I’m sliding into that hole again – I’ve got to stop the slide – gotta stop…” to no avail.

I can’t stop it. I say things I don’t mean, and they hear things I never say. It becomes a crying, screaming, shouting, stomping, roller coaster of acid madness. And the emotional hangover lasts for days.

Crushing. For them, as well as for me. The end result for me was that I felt like crap, mentally, spiritually, emotionally, and physically. And for my spouse, they — yet again — had good reason to fear and resent me. They couldn’t get away from me fast enough this morning – they have some business travel they’re doing, and they skedaddled promptly this morning.

Can’t blame them. I wish I could skedaddle from myself, in fact.

Down, boy

See, this is the thing that nobody around me seems to understand with TBI — that things get out of hand, even (sometimes especially) when I’m trying to stop the slide. I know things are getting out of hand. I can feel it. I know I need to keep things from getting out of control. I’m trying like crazy to get myself to stop, I’m trying like crazy to think it all through and protect the people around me, I’m trying to reason with myself and get myself under control before I do/say something I can’t take back, but no amount of thinking helps. It’s like there’s this wild junkyard dog lunging at the end of its chain, and it doesn’t listen to reason.

It rips the sh*t out of everyone, including myself. And the rips last for days with me — even weeks. Other people can forgive and forget, but I can’t get away from the recollection of how I was. I can’t get away from the reminders of how I talked and behaved towards my spouse. I can’t get away from the reinforcement of the fear and the anxiety around me, and the effect that has on my spouse’s life and health. They’re diabetic, and I am pretty darn sure that my TBI in 2004, and all the craziness that came out of it, played a significant role in their blood sugar going out of whack. I’m not blaming myself for them not taking care of themself, but I know for a fact that I have not been easy to live with for quite some time, and that can wreak havoc on a person’s glucose levels.

Not to mention their peace of mind.

I do pretty well with having compassion for myself and being forgiving and not beating myself up too badly after my episodes. The thing that gets me is the physiological after-effects. And this is the part that I think a lot of TBI recovery and rehab folks overlook — the subjective, emotional and mental effects of the physiological “flood” that swamps us. All that adrenaline, all that rage, all that violence (be it internal or external) soaks our system full of pain that manifests as depression and confusion and fog. And it can take a long time to clear it out. Days, in fact. Sometimes weeks.

Fortunately, I have all day today to myself to decompress, take care of myself, feed myself properly, get some exercise, and examine my life to see what the hell I am doing. I keep thinking that I’m getting so much better in my recovery and that I never have any problems with volatility anymore, but the fact of the matter is, I do. When I least expect them. This volatility is insane — literally. It is just like a wildfire that spreads quickly and takes over, and no amount of reasoning is going to stop it from doing its worst.

Ironically, it often happens when things have been going really well for a while. And it usually happens after a “day off” after a long and stressful week, when I have had a nap and the evening is approaching. I relax and take it easy all day, and I don’t look at my lists of things to do, and things are going well… until the evening, when I start to get antsy and “spring a leak” with all the churning, pushing energy inside me. All my pent-up restlessness spikes and shoots right out of me like wild solar flares — at whomever is nearby, which is usually my spouse, on Saturday evenings.

I suspect it may have to do with anxiety that comes up in me about the things I was “supposed” to get done during the day, but didn’t. I have a whole list of things I need to get done these days, some of them more critical than others. And when I don’t look at my list and figure out where I am in the process, I get extremely anxious and can freak out — like I did last night. I think I’m doing myself a favor by taking a break from the list, but it’s actually making things worse.

Bottom line is, I need my lists. I need to keep my bearings. And I need to learn to shut the hell up, when I feel myself getting going. I can be such an a$$hole at times. It’s not fair to anyone. I’ve gone off on too many people in my day, because my temper got the better of me, and it hasn’t helped me. People say they can handle it, but the fact is, they’d rather not deal with it. I’ve lost jobs over this stuff — good jobs. Jobs that kept me out of debt. I’ve been paying for my aggressive restlessness for years, now, and so has my spouse.

So, today is another recovery day for me. I’m all alone in the house, which is good. This wild animal needs to just prowl around in my space and let off some steam. Go out for a really good walk — not just a walk, a real hike. Up the side of the mountain and down again. Work off some of this energy. Give it somewhere to go that’s constructive and positive, instead of turning on me and everyone around me. Get myself in line again. And settle in to get some things done.

Not everything. But some things.

And take some naps. Not just one. Perhaps two or three. Short little 20-minute naps that refresh me and keep me going. Real breaks that get me out of the grind that takes over. Something good and substantial.

I also need to get out in the day. Part of the problem yesterday was that I was inside and by myself most of the day. I didn’t feel up to going out and doing things, like I usually do on Saturday mornings, and being relatively sedentary and isolated does a number on my head. I literally need to get out of the house and interact with other people, in order to stay sane. It’s a challenge for me, these days, because I haven’t been hearing very well lately, I’m dizzy and foggy, and I just don’t feel like interacting with people much at all nowadays.

But I have to get myself to do it. It’s not optional. I’ve got to do it. Push myself. Challenge myself. Make myself leave the house and even just go to gas up the car. Interact. Get out of my head and out of my house. “Taking a day off” is not something that’s very good for me, actually. It’s not a break — it’s a bit of a torture at times. It’s much better if I pace myself and do at least something useful and directed each day, especially on “days off”. Pushing myself a little bit to interact with others and take care of things is the one sure way I can make sure I’m not getting stuck in a rut and starting to believe all the crazy sh*t in my own head. That can happen so quickly. And the results are not that great.

So, yeah – my lists. Having everything written down in front of me only helps. It can be a little overwhelming at times, but in fact the challenge of making sense of it all helps to focus and calm me. There’s something about pushing myself just a little bit that clears my head, and that’s what I need. To push myself a little bit, focus in, and clear my head with the challenge.

Of course, then I can get into the whole overdoing it thing, and then I run the risk of turning into a crazy person like last night, but if I can keep a balance and not throw too many unusual and unexpected things in the mix, I can manage to keep my act together.

And make progress. Because it’s not just all about keeping things calm and level and uneventful. It’s also about making real strides forward to where I want to be and what I want to be doing with my life. It’s not just about maintaining — it’s about growing and improving.

That being said, I’m going to make myself a couple of eggs and have some good protein. My head is still foggy and dull, and I need a little something to perk me up. Protein does that. And it will get me up from this desk and computer… get me going in the direction I should be.

Yeah, I feel like crap — physically, mentally, emotionally, spiritually — after the scene last night. But it’s not the end of the world, and as long as I give myself time to really recover today — and ease back into what the next week is bringing in another 24 hours — I can recuperate and get my balance back.

And be a sane person for my spouse in the morning.

Onward.

Tutorials for dealing with TBI

Dealing with TBI takes a team effort

Dealing with TBI can be hugely confusing and frustrating. There is so much information out there – some of it conflicting, some of it duplicated, a lot of it outdated (and never updated on the web, because people stop updating their web pages). So, finding useful information that cuts to the chase, that’s practical, and offers more than just a marketing promotion can be a challenge. Fortunately, there are such resources out there. Project LEARNet is one of them.

Project LEARNet, which is “A Resource for Teachers, Clinicians, Parents, and Students by the Brain Injury Association of New York State”, has some great tutorials on Common Issues for students after TBI. Don’t let the focus on kids / students deter you – these are great resources for anyone who is seeking to better understand TBI. Check out the tutorials here. They are downloadable PDFs that you can print and take with you – great stuff!

All Project LEARNet Tutorials
1. Assessment Issues
2. Cognitive/Academic Issues
3. Self-Regulation/Executive Function Issues
4. Behavioral Issues
5. Social/Emotional Issues
6. Family Issues
7. Physical/Medical Issues

It is so rare to find a concentration of truly helpful information in one place. Also very useful, for anyone seeking to better understand TBI, is their page on Problems Seen after TBI. You can read about them here and then follow the links for more information and specific tutorials. They cover many different bases on their “Problems Seen” pages – general medical possibilities, cognitive/self-regulatory, behavioral, and social/emotional possibilities for the source of the problems.

If you’ve got these issues – or you’re dealing with someone who does – this is a great place to start.

Again, don’t let the focus on kids/students dissuade you. This is good and useful information and it can be of great help to just about anyone trying to figure out WTF?! after TBI.

Stopping the bad stuff before it starts

A storm was brewing…

Signs of progress… Yesterday, I was pretty worn out after a long day of work. I was supposed to leave for my vacation in the afternoon, but I had too much to do, so I ended up working through the evening to at least make a dent in what was happening with work.

After that, I got into the beginnings of a very familiar argument with someone over a topic that’s very touchy for me. Things have been tense for over a week, since the Boston Marathon bombing, which injured some friends of friends and had everybody at work talking and stressing… talking and stressing…

No matter where you are, these kinds of events can really take a toll on your mental health, and I was a little worse for wear yesterday — between not getting to leave for vacation on time, having to rush to fix all kinds of stupid sh*t that got screwed up because somebody at work didn’t want to do their job, and feeling pressured by my family to spend time that I don’t have, visiting them… and (had I mentioned?) working like a crazy person all day.

So, when this argument started, I could feel the familiar rush of indignation, getting upset because I “know better” than the person I was getting into an argument with. They were making unwise choices about their health, not taking care of themself, and then getting all tweaked because they have health issues. Uh, d’uh — you eat crap, you don’t exercise, you have no apparent regimen in your daily life, and then you complain about not being able to do things you used to do, and you’re freaked out about illness and getting sick and coming down with diabetes or a heart attack… without ever doing anything about it. I get so frustrated with this individual, whose behavior seems to have no connection with what they actually want to have happen in their life. It’s maddening.

And of course, I know better.

I started to get really tweaked over it, getting angrier and angrier with them over what they were doing and saying and how they were acting. Then it occurred to me — I’ve had this exact same argument with this person for years and years, and it never gets resolved. We just get pissed off at each other, go our separate ways for a bit to cool off, then get back in touch as though the whole thing never happened. There’s never any resolution, because they think they’re doing things right, making choices that make them feel good in the moment but which have been shown by tons of medical evidence, to do them harm in the long run. All they know is “the now” and all they really strive for in their personal life is to be “present in the moment”.

Yes, it sounds insane to me — trading your future for the sake of the now — but that is their perspective, and in all the decades that I’ve known them (they’re one of my longest friends), they have never felt or acted or believed any other way. And the times when they did have little health scares, they were back to their old ways, as though they’d never had the scares.

But as I sat listening to them, I could feel myself getting more and more tense, feeling myself really stressing over it… while they just carried on talking about things as happy as a clam. And when I said something about being concerned for them, they snapped at me… and I could feel that old argument coming on again. I noticed that in my own body, my head was starting to feel tight and pressurized. And my heart was starting to pound. I was starting to sweat, and my thoughts were starting to repeat over and over the same arguments and concerns I’ve had for years — like they were a dog chasing its own tail. I was getting really uptight, really stressed, and I was on the verge of flipping out at them — as I have often done in the past.

But I stopped. I stopped the downward spiral, I stopped the dog chasing its tail. I knew I was tired from a long day of working. I knew I was upset about not being able to leave on time for my vacation. I knew my patience had been running thin since about 10:00 that morning. I knew that where I was going was NOT a good place to be.

I also remembered what I’ve heard and read in a number of places — the average emotion lasts about 90 seconds. Its biochemical “recipe” gets into our blood — and then can get flushed out in less than two minutes. If left to its own devices without any kind of intervention on my part, it will dissipate and disappear. I don’t have to do anything, if I don’t much care for the experience — just breathe and let it go its own way. On the other hand, I can choose to feel something different and let that get into my system for a longer period of time.

So, if I’ve got 90 seconds to work with, that gives me a choice — I can either dive into whatever I’m feeling and get all worked up and bent out of shape, like I have countless times. Or I can distract myself (I’m very good at that), breathe, let my system chill out, and NOT have the same shouting match that has been the buggaboo of this friendship since almost the beginning.

So, last night I chose the latter. I distracted myself. I just sat there quietly while they talked, and I didn’t get into it. I was upset at first, but after a little while that feeling dissipated and I started to feel sane again. The dog stopped chasing its tail. The tension and pressure in my head relaxed. And even though I was still irked by what they were saying and doing in their day-to-day, that feeling didn’t “own” me the same way it usually does. I was able to tell them what I felt and how I was feeling, in a sane person’s gone of voice… and then let it go. I didn’t get into the blame, the fear, the anxiety, the frustration. I “went there” for a little bit, last night. But then I let it go and did something else with my attention. I stopped the flash flood of emotions before it got started.

And you know what? When I didn’t fly off the handle and yell and criticize and attack, the person on the other side of the discussion could actually hear what I was saying. They could actually get that I was concerned about their health, that I was worried about how much money they were spending on junk food, and that my frustration and anger came out of concern for their health. It wasn’t about me trying to shame them. It was about me caring about their well-being and wanting to see them have a better life and do better with themself.

And it helped. Last night could have kicked off a really shitty vacation for me, starting me off on a foot that started with a blow-out, me not being able to sleep from being so friggin’ tired, having my chemistry out of whack, and having yet another instance of an impossible argument that never gets resolved.

I can’t say I’m that encouraged by my friend’s choices. And I can’t say I’m that optimistic about their long-term health and happiness. But for me, at least I didn’t drown in a flood of emotion that just swamps me and makes me feel really, really terrible. When I get that upset and blow up, the biochemical residue stays with me for days and drags me down, making me depressed and wiping out my self-confidence.

Today I don’t have that problem. And my friend doesn’t have to go through their day with the memory of yet another one of my blow-ups. Today I get to start fresh. Everybody does.

Onward.