Getting used to it — again

For some reason, there’s a part of me that thinks I’ll be able to soldier through this TBI stuff and come out on the other side, issue-free.

Like I won’t have any more sensitivity to noise or light when I’m tired.

Like I won’t feel like going off the deep end, when I get overwhelmed and fee cornered.

Like I will finally feel rested and be able to live each day with an abundance of energy.

Like I will feel like my old self again.

Broken record me – it’s not happening.

But check this out – that doesn’t so much matter.

I mean, it does matter that I generally feel like crap on any given day, that I feel like I’ve been dragged behind a bus, at any given moment, and I feel like I’m going to just drop from exhaustion and overwhelm at the least expected times. That’s no friggin’ fun, for sure.

But the main thing is — these things don’t have to ruin my life. Sure, its unpleasant. Sure, it’s troubling. Sure, it’s a hassle to deal with. But just because it affects me, doesn’t mean it has to affect others, make them miserable too, and ruin my chances of being able to do something worthwhile in the world.

I can live and do the things I need to do, regardless of how shitty I feel.

And if I can’t get these issues to go away, I can at least keep them from ruining everyone’s day.

Just manage them. Deal with it. Handle ‘em.

And get on with it.

Onward.

Brain Injury and Lying – The Rest of the Story

Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.

It seems so innocent…

I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.

I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.

The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.

Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.

Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.

We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.

The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears.  But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.

Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.

It took several years to get them back on track, but we did it.  And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.

The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.

So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.

They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.

It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is  now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.“

And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.

Fear that there is something terribly wrong with them.

Fear that they are damaged beyond repair.

Fear that others will hate and look down on them because of the strokes.

Fear that they will never be “normal” again.

Fear that they’re going to die a horrible death and go to hell forever.

Fear that it is all TOO MUCH to handle.

So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.

There’s the lying.

I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things  — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.

I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.

It’s getting really bad. On a number of levels.

First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.

And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.

And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them and their spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.

Right. Emotional support. Unfortunately, I know differently.

This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.

Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.

And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.

It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.

But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… and their blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!

So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGER because they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.

When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.

At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.

But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.

None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.

Here’s to life – onward.

Back again – with lots more work to do

Back at it

It’s been about a week since I was last able to write. I’ve been traveling out of the country, as I did about six weeks ago. This trip was not nearly as successful as the last one. Well, in some respects it was — in that I was able to make some good connections with people pretty high up in the company. But in terms of working with my immediate team… not so much.

The new team I’m supposed to be a part of was pretty cold towards me and the other coworker I traveled with. So, the warm welcome from before was pretty much rescinded, and it just left a bad taste in my mouth.

Not to worry, though. I have other ways I can make the most of this situation. If I let other people’s bad behavior put a crimp in my style, then it’s my bad. It just can’t mean that much to me. At least, that’s what my objective mind tells me. My subjective mind that wants to prove that “I can do it” and wants to be on top of everything and have everything go my way, is really struggling with this shift in dynamics. It feels like I’ve failed. It feels like I’ve done something wrong and I need to fix it. All my fault. My doing. My bad. Yada-yada-yada.

Yeah, the “you’ve done something wrong” voice is loud and clear in my head, and I can’t seem to get it out. I’ve tried, but it’s a real bitch.

What I really need is a long hike in the woods. Something to get me out of my head and remind me that I am home again and spring is on the way. I need to get more exercise, period, since I didn’t get a lot while I was overseas, and I ate a lot of local desserts which tasted great but haven’t done my body much good. I need to get the circulation pumping and move some of this on through. Clear my head. Get my house in order.

One thing I did manage to do while I was away was watch some videos of TBI rehab pioneers who seem to have a pretty good idea about how TBI works and can affect your life. I found some videos of George Prigatano and some of his other colleagues at the 1st International Brain Injury Conference. He has some great things to say about the role of psychotherapy in dealing with brain injury. One of his colleagues, Harriet Katz Zeiner, talks about CRATER therapy, which – as I understand it – is a way to structure life after brain injury in ways that require less from an impaired memory, to work with survivors and their family members to support and monitor progress, and also to head catastrophic reactions off at the pass before they hijack the whole recovery process.

It’s interesting — in the past four years, I have had huge improvements in my anxiety level. I wasn’t fully aware of the intensity of my anxiety up until a couple of years ago. For years, I thought that my outbursts and freak-outs and melt-downs were totally justified because things just got so incredibly overwhelming for me, and I couldn’t — just couldn’t — deal with them.

Getting too much information to process all at one time… being put on the spot and not feeling up to the task of sorting through it all and dealing with what was going on… being challenged and taken to task and pressured… it set me off.

When I was with people in a work setting, I would just check out or walk away — on a small scale and also on a large scale. I think a lot of my job changes were reactions to things just getting too overwhelming for me, so I couldn’t deal — even if they were going right — and I “moved on to better opportunities.” On a smaller scale, I can think of countless times that I just bagged something — just quit a task that I was supposed to complete, be it a chore that my parents asked me to do, or a project that I was given at work. Either way, the result was that I just quit. Just bagged it. Fuggedaboudit. What-ever.

In my personal life, if I got too challenged and too put-upon, I would retreat into my “strong silent type” role, or I would blow up and go off on whoever was pressing me. And the people I would go off on, would get so freaked out by the intensity of my response that they became afraid of me, treated me like I was a threat. And that didn’t do much for my self-perception and self-esteem.

Then I realized that I was doing all this — you’d think I’d get a clue that this was happening with me, right? But it just didn’t register as something that wasn’t 100% justified, and that I might be over-reacting and going off for no reason. I have friends who have anxiety issues and after talking to them, I thought for sure that it was pretty much that this behavior was an anxiety issue with me — that it was psychological, being related to my thinking and how I was choosing to react to situations around me.

And that’s how I’ve been thinking about it for a couple of years, now. It’s been helpful to have that kind of mental construct. And when I look back, I can see so many instances where I got anxious and either ran from something or someone that overwhelmed me, or I lashed out and attacked.

The thing is, there was this little piece that seemed to be missing, and I found it during my trip. The missing piece, I think, is what they call the “catastrophic reaction” — an emotional outburst (sometimes accompanied by physical acting out) that is way out of proportion to the situation at hand. Sometimes, it’s an extreme reaction to an imagined problem that doesn’t even exist. Some examples from my own life — cursing a blue streak and throwing and/or breaking things when I drop something, verbally attacking someone who is just making me a little uncomfortable, or flipping out when things don’t go the way I expect them to.

That pretty much describes my behavior for years – being an unpredictable powder-keg who might say or do just about anything, if things don’t go my way.

And it comes with a ton of anxiety.

But why? What’s the big deal? Why am I so on-edge over things? Whence the anxiety? I’ve puzzled over that for quite some time, unable to see why I should be so anxious, and why it has really increased over the past years. I didn’t used to be so anxious, but “all of a sudden”… It didn’t make any sense to me. I know that TBI can seriously mess with you and your sense of self and make you incredibly anxious and self-doubting. But there was a whole concept that was missing… something that brought it all together — and I found it over my business trip:

The Catastrophic Response.

I want to write more about this right now, but I’m pretty jet-lagged, and I need to take a walk. I need to take care of some things around the house, now that I’m home, and I need to give my brain a rest, so I can function well today – and beyond.

Bottom line: This Catastrophic Response (now that I have a name for it) has been wreaking havoc with my head and my life for a while. It keeps me from approaching the things in life that I want to approach – including discussions I need to have with my neuropsych about my freak-outs and behavioral issues. It keeps me on tenderhooks of anxiety and avoidance, and it keeps me from living my life.

Seriously.

And I need to do something about it. Now that I’m aware of it, I need to do the work to address it.

So, I shall — by taking myself outside for a long walk in the woods. That should help a few things…

Do-Over Alert – How do I want to remember this time?

Ouch – that stings

I think I found a new way to get a grip. I’ve written a bunch of times about how I’ve lost it over little things — dropping a spoon while I’m making my morning coffee, not being able to hold something firmly in hand, getting stuck in traffic, navigating tough situations at work, arguing with my spouse and having the argument spiral wildly out of control and escalate to the point of madness…and more.

It’s been an ongoing struggle for me, and it’s cost me plenty, to lose my grip and be reduced to an adrenaline-soaked pile of skin ‘n’ bones, shaking and sick to my stomach and regretting what I did or said for hours… days… weeks… sometimes years. Regret is a usual and customary part of my life.

In some ways, it’s the glue for my past. If I didn’t have regrets, and all the strong feelings that go along with them, I’m sure my perception of my life and my past would be very different from what it is right now. In some ways, I’m not sure my memory of my past would be as clear — the emotion of regret has pretty much locked some experiences in my memory for all time. Take away the regret, and you take away a big part of how I recollect my past.

Some folks say, “I have no regrets – I would do it all again the same way.”

These folks have no imagination.

I can think of a million different things I would do differently, if I had them to do all over again. And I can think of a million different outcomes that I wish had happened, versus what actually did. It’s not that I’m being hard on myself, it’s just that I see and recognize my limitations, and I am very clear about those instances where things did not go the way I wanted them to, because I “lost it”, sometimes for no apparent reason.

Do I wish I had not flipped out at my boss, back in 2005, and given him a piece of my TBI-addled mind? You betcha.

Do I wish I had not harangued and browbeaten and hassled my spouse, till they finally broke and threatened to divorce me — not once, but many, many times in the course of the past years? You’d better believe it.

Do I wish I had not gotten into those fights with the neighbor kids that got me in trouble with adults and other kids — who were older and bigger and meaner than little ole obnoxious me… and outnumbered me on top of it? How could I not?

Do I regret flying into road rage over nothing, really, and chasing people down a highway or side street to “show them”, several times, just a few months back? Absolutely.

My past is littered with poor decisions, as well as good decisions I couldn’t make good on, because of some stupid-ass impulse control issue or some idea that felt great at the time, but was a really dumb one, once I thought about it with a clear head. My life has been punctuated by overly emotional outbursts where my frustration and confusion got the best of me and turned me into someone I did not recognize. My memory is spotty to begin with, and the pieces I actually do have in place are anything but uniformly good.

So yeah, regret.

If only….

A lot of people tell me that regret is a “bad” thing to feel. They say it’s negative and it holds me back from really enjoying my life. They say the same thing about shame, but in all honesty I have a lot less problem with shame than with regret. I’ve heard shame defined as a humiliating sense that you should have done better, or somesuch. And then there’s guilt, where you make things that sucked into things that were your fault — as though you had so much control over those things to begin with. Shame isn’t such a big deal for me — sure, I usually have the sense that I should have done better, but it’s not that humiliating. It’s just a little embarrassing. Guilt isn’t such a huge deal for me, either, because things that suck are often just not my fault, and I often have the very clear sense that I have no control over what happened or what resulted from it.

But regret? Yeah, there’s no lack of that with me.

But does it hold me back? Sometimes it does, but it doesn’t always have to. In fact, regret is probably one of the things that holds my life together. It might sound strange, but think about it — it’s a powerful emotion, and it’s always lurking right around the corner in my mind. I am keenly aware of all the things I’ve screwed up and how I wish I had done them differently. And that makes me even more keen to figure out how to NOT screw things up the next time.

See, that’s an important part of my recovery — being able to assess the outcomes of my behavior, see where I’ve screwed up, and then make an extra effort to get it right the next time. There is usually a next time, and when I’m using my head, I can make the most of new opportunities when they arise. It hasn’t always been easy, and I’ve often been humbled (and humiliated) by circumstances. But it’s paid off. Regret has served me well.

I’m currently having a new opportunity to re-do things that I’ve screwed up in the past. This is a big-time do-over, and I really want to make the most of it.

Basically, I have discovered that a very close relative of mine really screwed me over a couple of years ago. I won’t go into the details, because it’s complicated, but basically it’s about them pushing me out of the way (behind my back) and trying to cut me out of the family, because they believed I was “damaged goods” and I was a hindrance and a waste of time to my family. Things have been pretty touch-and-go with my family, over the years, and I’ve worked really hard to make up for the things I messed up — and I thought I was doing pretty well, a couple of years ago.

Now I find out (through old correspondence and writings) that there were some serious “operations” going on to push me out of the family, string me along on the surface, but keep me clueless about what was really going on. I come to find out that there were all kinds activities my family members were doing with each other over the space of a couple years — they had a great time and really enjoyed themselves, and never said a word to me. In fact, they hid it from me and pretended it never even happened. I thought something was up, a few years back, and I asked about it, but everyone flatly denied that anything was going on that I didn’t know about.

Two individuals, in particular, were driving the whole thing, and they kept me in the dark while organizing activities and having a grand time… while I was working my ass off at work, just trying to make ends meet, and generally struggling with so much on a daily basis without any real moral support.

Funny, I thought people were more distant than usual.

Now it turns out, I was not only right about something going on, but I vastly underestimated the extent to which I was cut out of things. There was even talk of some large-scale activities which involved people very close to me, to whom I have turned for support many times. Basically, they were going to ditch me and go traveling, see sights, do lots of different things… a full roster of family activities, to which I would not be invited. In the stuff I read, I was dismissed as an impediment to their fun, with talk about how so-and-so “handled” me and “talked me down” when I was upset. Like I was some kind of mentally deficient village idiot they just couldn’t be bothered with.

God, cut me, why don’tcha… When I read this stuff over the weekend, it really threw me for a loop. There was this whole other world that people very close to me were developing, and not only was I not invited, but I was un-invited, deliberately pushed to the side, like I was some kind of human flotsam. Dismissed. Disposed of. Like I didn’t matter, and they couldn’t be bothered. I had been feeling bad about feeling a bit pushed to the side, but I didn’t want to make that big of a deal out of it before. Now I realize that it was a much bigger issue than I ever imagined, and in addition to feeling hurt and betrayed, I also feel like a complete idiot for not realizing what was going on, and basically fulfilling their expectations that I was a clueless, brain-damaged idiot who would never know the difference.

And that stings.

Yesterday was a pretty rough day for me. It was like Day One of the new world… and I had a hundred different ideas about how to confront people and let them know that I KNEW what they had done, and although I never pressed the issue before, I still knew that something was going on. I’m not that damaged. I wanted them to know that I had a lot more details now, than they ever thought I would…  and I wanted to take ‘em all down. Cut them out of my life. Just dispose of them, the way they’d tried to dispose of me.

The only thing is, they’re my family. And when I really thought about it yesterday, I realized that over the past six months, they’ve been trying to do better with me. I think the guilt just got to them. And shame. The realization that what they were doing was really pretty shitty must have sunk in, and they decided to change their ways. They’ve been trying — noticeably — for the past six months or so, to make room for me and include me in things.

And now the question comes down to this — do I let myself fly off the handle with them, confront them, and try to punish them, for what they did before… or do I let it go and allow them to make amends for their callous unkindness? They really seem to be trying, and they seem to have had a real change of heart, and I don’t want to screw that up. It might make me feel better to confront them and make them “pay for what they did to me”, but in the long run, how will that help? I know what they did. They know what they did. Who knows why they did it, and who knows — maybe it was just one bad idea that someone had once, which then took on a life if its own… and then they all got carried away in the heat of the moment and continued to make those unkind decisions just ’cause it seemed like the thing to do.

I will never know that. Nor will I ever know what changed their minds about things and caused the change of heart.

All I know is this — years from now, when I look back on this time, I don’t want to remember flying off the handle and going off the deep end, doing my “scorched earth” meltdown freak-out thing with people who are my family and my main support. I don’t want to think back on this time as one when I lost it, when I trashed the attempts to make things right, out of my hurt and pain and insecurity and need to make others hurt the way I am hurting right now.

No doubt about it, this is very painful. It’s been excruciating. To be so dismissed and so marginalized and just pushed aside like a piece of trash… it just reminds me of all the other times in my life when that was done to me, and it just feels terrible. But even more terrible would be to let that pain and hurt take over my life and proceed to cause more pain and hurt in the lives of others.

That’s the kind of memory I don’t want to make. That’s the kind of experience I don’t want to have. Because no matter how justified I am in my hunger for revenge and vindication, no matter how much right I have to eye-for-eye justice, the long-term fallout of that kind of thinking and behavior is much worse than the original cause for it. It’s bad enough that I was deceived for over a year about things that mattered so much to me. It’s bad enough that the people I trusted most turned against me and made fun of me and treated me like just some tool. But if I let loose with a rampage, then any recovery from that is going to be delayed — for a lot longer than a few years. And knowing me, when I get going, I say and do things that can never be taken back. And if I let myself get to that place of uninhibited attack, I can do more damage than I intend to.

I should know. My past is littered with experiences like that.

And I don’t want to do it again.

So, I’m just letting it go. I have to. I am overworked and over-tired, and if I indulge my outrage, I’m going to be even more overworked and fatigued as I try to clean things up on my side. I’m doing my best to turn my attention to more positive things and focus on the good stuff in my life, not dwell on the bad. I know what it’s like to have a bad idea and then let it spring into life and let it get out of hand. I know what it’s like to not be able to stop myself from doing and saying those things and hurt someone I care deeply about. I know what it’s like to be human, and that’s what happened with my family — they just got really human, a couple of years ago.

And now they’re trying to make it up to me.

They’re being really nice to me. Considerate. Caring, actually. More than ever. I’m not going to push that aside, I’m going to let them do it, regardless of the reason. The past is the past, and while it hurts like hell to find out the inside story, it’s still the past. And I have a present and a future I need to take care of.

I can’t let the bad decisions and behavior of others dictate my own behavior and state of mind. I’ve let that happen in the past, and this time I have a chance to do it over — do it differently. I have a lot of really great prospects ahead of me, and if I let this revelation get the best of me, then I lose out. And I don’t want to do that. I have been through some pretty tough things, but this is one of the toughest… and when I look back on this time, I want to look back with pride that I handled myself well, that I dealt with everything as a sovereign adult, and that I chose to rise above it and not wallow in petty hurt and pain, which only serve to make me unhappy and unhealthy in so many ways.

Life can really suck, sometimes. Pain happens. Betrayal happens. So does deceit and scheming and all kinds of sick little games. Freak-outs happen, too. As do meltdowns and breakups. But in the midst of this upheaval, I’ve got a new chance to handle the old shit in a new way. And I will. Because when I look back, years from now, I want my memory of this time to be full of pride, not only pain. I don’t want to have this be the kind of thing I regret and carry around with me as yet another example of how I can’t keep my act together. I want the moment to belong to me, not to others who tried — once upon a time — to ditch me and treat me like I was nothing.

They’re trying to make it up to me. They’re still not admitting anything, and they’re still hiding what went on, but at least they’re trying to make it up to me. And that’s a positive change for the better.

Life is waiting, and it has a lot in store — lots of it very good stuff indeed.

Onward.

How Traumatic Brain Injury (TBI) May Affect Violent Behavior

Interesting and important video:

Causes of violent behavior after TBI: damage to the parts of the brain that inhibit “wild animal” behavior, fatigue, agitation, un-managed anger, and a host of other issues. Concussion can cause it, along with more extreme kinds of brain injury, both traumatic and acquired (such as stroke).

Medication is a possible intervention, and so are a variety of other approaches, including mindfulness training, behavioral modification, and developing additional coping skills.

Still managing TBI issues, still paying attention…

Brain injury is a funny thing — not funny as in “Ha-ha-ha”, but funny as in “How weird – I didn’t expect that to happen at all”.

One day, I’m fine, feeling good, and not sure how or why I ever had issues before at all.

And a few days later, I’m teetering on the edge of complete nervous breakdown, trying to talk myself back from that edge with what I hope is a calm and soothing demeanor.

It’s really weird, how things just suddenly become HUGE ENORMOUS PROBLEMS, for no apparent reason. Well, actually there are very good reasons, and when I track them over time, I can usually see how they happened. The thing is, leading up to those HUGE ENORMOUS PROBLEMS, I’m feeling good, I’m feeling fine, and things seem like they’re going along at a pretty good clip.

And all seems like it’s well. For all time. And I forget that it’s ever been any other way.

Or that it could possibly become any other way, without an instant’s notice.

But it can get ugly fairly quickly, and when I’m least expecting it. I’m not expecting it, because my attention is focused on other things besides my frame of mind and my stress levels. I’m caught up in something “important” — and it often is, despite my diminutive quotation marks — and I have a lot on the line, and I feel like so much is riding on me doing such-and-such in a certain specific way… I’m caught up.

And that’s when I get caught out. Pants down. Short and curlies waving in the breeze. And I have to stop the madness, back up, and start to put things back together again.

It doesn’t much matter whether all the excitement I’m dealing with is good or bad — I get tired and my system gets stressed in either circumstance. In fact, if anything, good things bode worse for me, because I get so caught up and so consumed by what I’m doing, and the energy is high, and I’m getting more and more tired but I don’t even notice it, because there’s so much good happening around me. And I don’t want it to stop. So, I keep going, keep pushing myself, keep stressing my body with a lot of adrenaline, but not always a lot of good food and water and rest.

When unfortunate things are happening with me, it can actually be less stressful overall, because I’m aware that I need to actively manage my stress levels, eat right, get enough rest, etc. Because there are “bad things” happening, and I need to be up to the task at hand. So, when things are rough, I’m actually less stressed overall. Here, let me show you:

The good, the bad, and the results – the higher a rating is, the better it is. The lower it is on the chart, the worse the situation is.

Click the image above, and you can see the relative difference between sleep deprivation, anger, anxiety, and excitement – and you can see that my “AMF” (or “Active Management Factor”, which is the rating I give myself for how much attention I am paying to my situation) is actually a bit higher when things are bad – which translates into less anger, less anxiety, and less sleep deprivation. And more excitement. The less well I manage myself when things are going crazy around me — even if it’s a good crazy — the less enthusiasm I have over time, as well, so it’s an all-round whammy, when I don’t pay enough attention to myself and my state.

When things are rough, then I tend to pay closer attention, because I know bad things can happen. But when things are going well for me, I tend to not actively manage my situation, and then I lose out on things like sleep and good food and also excitement. Keeping up the excitement when I’m dog-tired is even more work, even if the excitement initially drives my behavior that deprives me of sleep.

I can easily get complacent, when things are going well, but the net effect on my overall system is the same — I wear out.

That’s kind of where I am right now – I spent about 15 hours yesterday working on a project that I am very fond of, and which I believe has a lot of potential. But today I am wiped, and I’m feeling pretty antsy. I did a LOT of work yesterday that was good, and now today I am feeling the effects of it. So, I need to take away the arbitrary deadline(s) I set for myself, and stop stressing myself over this. There is a lot of stress going on at work, these days, and I can’t afford to let everything get the better of me… which is the line I’m treading right now.

I need to be smart about this… and also manage this situation actively. It doesn’t help me at all, if I push and push and push… and then end up with a crappy result. I need to give myself more time, not let the adrenaline and arbitrary deadlines drive me. I need to do a reality check and just get myself collected and sane again.

Because I have more to do today, than just work on my project. And my project is the one part of my life that I’m NOT driven by someone else’s insanely stupid deadline. So, I can cut myself a break. Give things some thought, and let reason drive my motivation, not some crazy lottery-style pipe dream that’s going to solve all my problems in one fell swoop. That’s no good. Let reason prevail.

And so I shall. Because it’s a beautiful day. And I want to keep it that way.

Taking the edge off

Sometimes you just gotta let it go…

Few things in my life have been more of a roller-coaster than this TBI recovery business. I wrote recently about feeling like I was stalled – stymied – unable to move forward. And it felt pretty rotten. I have been feeling really down on myself, lately, and it hasn’t been helping me at all. The worse I feel, the worse I do, generally… and then I feel even worse. It’s a downward spiral that usually has its roots in fatigue and stress and me believing everything that goes through my brain.

You’d think I’d realize by now that my perceptions are not always consistent with the truth of the matter… I know my brain plays tricks on me. I know it blows things out of proportion. I know it loves to get worked up and all stressed out, because it loves the feeling of that rush, and it doesn’t feel awake without it, sometimes. But when the agitation gets going, the first thing I do is start listening to what my brain is telling me — which is the last thing I should do. I should really listen to what my mind has to say. I guess I need to keep learning that lesson.

Heck, maybe I should make myself a sign that says, “Don’t believe everything you feel.”

I think I will. Put it where I’ll be sure to see it on a regular basis. ‘Cause falling for what I feel is one of the biggest sources of pain and complication and suffering for me, that I can think of.

Anyway, it occurred to me not long after I’d written the post about feeling stymied, that I am actually doing really well in some truly substantial ways – the main way being, I’m a LOT less “hot” and reactive than I have been in the past — even in the recent past. I’ve recently started doing my conscious breathing again, and I’ve been incorporating it into my everyday life, taking a break to breathe and relax when I sense things are getting really tense. And I have to say, it feels pretty good. AND it takes the edge off my hot-headedness.

As an example, I was washing up dishes the other day, when my grip slipped on the dish I was washing and it clanked loudly on the bottom of the sink. A number of things happened that in the past were sure to set me off: I lost my grip on a heavy dish, running the risk of breaking it… my grip was slippery, which is a strange little stressor for me — if I don’t have a firm grip on something, it sets me on edge… there was that loud and startling “clunk” that really threw me off and sparked a little “alarm wildfire” in my brain. I’ve been having a lot of vertigo, lately, and it’s stressing me out, making me even more susceptible to flare-ups when simple things like this happen.

In the past, I would have freaked out. Lost it. Started banging things around and cursing and then getting really down on myself for getting so bent over such a simple thing. Few things kill my self-respect like blowing up over little things like losing my grip on a dish I’m washing… or dropping something, or not being able to get a hold on something — and these have all been happening to me a lot lately.

But this time, I handled it. It seems like such a small thing, but it’s huge for me. I just stopped and took a long, slow breath. I relaxed my tense shoulders and cracked my back (all I have to do is lean left or right, and the “popcorn” starts to pop in my spine). I just took a little break to gather myself, and when I went back to washing, not only did I feel calm and together, but I felt more calm and together than I had all day.

Magic. At least, that’s how it felt. But it’s actually more science than anything else — and it’s repeatable. I’ve been doing it, on and off, for the past several weeks, and while I’m not 100% successful at never ever blowing up over stupid sh*t, the fact of the matter is, I’m 5000% better than I was, several years ago. Just taking a breath and stopping and relaxing — stopping that chain reaction of WTF?! before it had a chance to get started — got me back to where I wanted to be.

And even though the vertigo is still a problem with me, I have far less anxiety and anger and frustration than I had in the past. I’m breathing consciously more often, in the course of everyday stresses, and I’m taking breaks to compose myself in the face of seemingly insurmountable challenges. I’m giving myself a chance to feel something other than the perseverating junk that gets lodged in my system, and I’m consciously smiling or laughing at situations that are usually great reasons for me to get worked up and bent out of shape — often over nothing. Just getting out from under the little black clouds that seem to follow me everywhere, even for a few short moments, has been helping a lot. And a simple smile — even if no one is around — has the surprising ability to change my perspective just enough to find something else to focus on — besides the WTF?!

Not freaking out over losing my grip on a dish… not blowing up over every little thing… actually feeling relaxed in the face of stress and drama… what a concept.

I could get used to this. It feels pretty awesome.

 

The Sixth Stage of Grief (after TBI)

Some days you just have to keep swimming

I’ve been dealing with a lot of grief, lately. The work I’ve done for nearly three years has changed dramatically, and with that change, I am losing a key element of my identity which I am realizing has been a big part of who I see myself to be in the world. Not only that, but my (and other coworkers’) impending change of employment, which is becoming self-evidently inevitable with each passing day, is a source of yet more grief, as I contemplate getting on in my life without these people in my life each day. Even the people I don’t much care for and won’t mind never seeing again, have a place in my life, and my life has been shaped by and oriented to them for years, now. So, making a change is hard.

Making any change is hard for me. It always has been. I take it hard. I spiral. I feel like the world is ending and I can’t see any light at all – tunnel or no tunnel. The grief is almost debilitating, and trying to “sit with it” as some of my meditating advisors suggest, just makes it even more profound. What’s more, when I “invite it fully”, as I’ve heard recommended by a very prominent meditation teacher/practitioner, the waves of grief become so amplified, so intense, so profound, that it practically paralyzes me.

And watching myself and my reactions to this kind of experience, and seeing how the “standard issue” coping mechanisms actually cripple me, it occurs to me that the population best served by those sorts of approaches are neurotypical, non-TBI folks whose brains are not wired / re-wired quite the same way mine is. Seriously, this emotional processing gets to be debilitating. And you know what? Despite having gone through this kind of process more times than I can count in the course of my loss-riddled life, despite promises and belief and a bit of dogma around the formula of the Kübler-Ross model (Denial, Anger, Bargaining, Depression, Acceptance), I’m starting to believe that with TBI you need a sixth stage — PIAAGOWYL — Put It Aside And Get On With Your Life. Or P for short.

So we end up with DABDAP. That’s my proposal, anyway.

In brief, according to Wikipedia, the five “stages [of grief], popularly known by the acronym DABDA, include:^[2]

1. Denial — “I feel fine.”; “This can’t be happening, not to me.”
   Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.
2. Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”
   Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
3. Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…”
   The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?..” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it’s a matter of life or death.
4. Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?”
   During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It’s natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation.
5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”
   In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This stage varies according to the person’s situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief.

Kübler-Ross originally applied these stages to people suffering from terminal illness. She later expanded this theoretical model to apply to any form of catastrophic personal loss (job, income, freedom). Such losses may also include significant life events such as the death of a loved one, major rejection, end of a relationship or divorce, drug addiction, incarceration, the onset of a disease or chronic illness, an infertility diagnosis, as well as many tragedies and disasters.

As stated before, the Kübler-Ross Model can be used for multiple situations where people are experiencing a significant loss. The subsections below explain how the model is applied differently in a few specific situations. These are just some of the many examples that Kübler-Ross wanted her model to be used for.

Now, in watching how I handle loss and grieve over things, the thing that strikes me is the intensity and duration with which I experience everything — to the point of losing all sense of perspective and temperance. I mean, I just lose it. Each “stage” becomes a raging animal in its own right, and it pulls me down into its jaws like that sinkhole that swallowed that guy in Florida. And nobody, but nobody, can get me out, so long as I’m “feeling it fully” as some teachers suggest.

Seriously, feeling something “fully” is a recipe for disaster with me. The emotion takes on a life of its own and snowballs into something vast and overwhelming and utterly debilitating. And you know what? It doesn’t go away. It stays with me as keenly, 20 years later, as it was when it first arrived. I still teeter on the verge of tears when I think about some losses I had when I was a little kid. I still have to fight back waves of despair and depression when I think about some things that I lost — even when everything turned out okay in the long run. Time doesn’t heal those things with TBI. It just doesn’t. And the more I think about it, the wiser it seems to me that my neuropsych doesn’t tolerate me going off on emotional drama tangents, or encourage me to “feel fully” the crap that I’m going through each day.

Because with brain injury, “fully” is in a whole different league than what most people experience. And the consequences of letting myself get too close to the edge of that pit are WAY too serious. Think Owen Thomas of Allentown, PA — the U Penn football player who hung himself after an uncharacteristic emotional breakdown. He had no history of depression, and no history of mental illness. Yet this young man with a CTE-impacted brain, killed himself, seemingly on a whim.

It’s one thing to go through grief when you’re neurologically intact. Then the 5 “DABDA” stages of grief make sense. But when your impulse control and executive functions and emotional modulation abilities have been compromised… good luck. Here’s how my grief experiences go:

1. Denial — “I feel fine.”; “This can’t be happening, not to me.”
   Denial is usually only a temporary defense for the individual, but for me, it can continue intermittently for quite some time. What’s more, what most people would consider “denial” is more a case of my brain not gathering all the salient facts together and making proper sense of it all in quite the right way. I can go for weeks and months without really realizing what’s going on, because I have not assembled all the pieces of information “in one place” in my brain — it’s not so much denial, as it is the way I process information — with full focus on one or two issues, totally excluding everything else until I have made sense of the one or two that are in front of me. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. In my case, I don’t know that it’s ever really replaced. Wtih me, denial can go on for a long, long time, even after the situation is a distant memory. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage. And with TBI this is more problematic, because as I said above, cognitive processing differences look a lot like denial, when they are just different ways of parsing info and fitting it all together.
2. Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”
   Once in the second stage, the individual recognizes that denial cannot continue. And when this stage comes with someone who has TBI-related anger issues, it can be hell for everyone and anyone. Combine the anger with impulse control issues, and an already underlying lower threshold for anger management, and you’ve got an extremely volatile situation. Because of anger, the person is very difficult nearly impossible to care for due to misplaced feelings of rage and envy. The misplaced feelings can be tied in with a multitude of different life situations, and the feelings themselves can be so amplified that the person can become just a little dangerous. I’ve found myself actually throwing things at my desk at work, over the past few weeks, which is a red flag for me — and H.R. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. Or at nothing or no one in particular. With TBI, you don’t need a reason to be angry. But you sure as hell need strategies for controlling your outbursts and getting your mind out of that state. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief. And it is important to find ways to keep cool and calm down the erupting volcano, when you are dealing with grief and TBI all in one. Seriously, this stage – while it might seem like “just another stage” for neurotypical individuals – can be seriously impactful for someone who’s living with brain injury. It requires a lot more attention and better coping strategies than “letting the process run its course”.
3. Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…”
   The third stage involves the hope that the individual can somehow postpone or delay death (or whatever else you’re losing / have lost). Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?..” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it’s a matter of life or death. In my case, the bargaining stage doesn’t work very well, because I have difficulty remembering from day to day what I’ve promised in return for a reprieve. It’s almost comical — one day I can bargain and promise that I’ll do such-and-such, but the next day I’ll completely forget that I made that promise and I’ll be back to anger and sadness and denial and all the other stages. Then I’ll remember, “Oh, yeah – I promised that if I did such-and-such, I will get such-and-such… But I’ve already forgotten, so I didn’t hold up my end of the bargain, so why should things work out the way I want them to?” Hence, bargaining is not much of a strategy for me. It only works if you can remember what you promised the day or week before.
4. Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?” And so on. Heck, you don’t even need a specific thought or point of view to get depressed with TBI. With me, levels of depression are directly related to how much energy I’ve expended on things, how much I’ve worn myself out, and how much more I feel I need to do. When I have a lot on my plate but I don’t have a lot of energy, and I have been living on pure adrenaline for days, *wham* I get depressed. Severely. The thing is, it passes as quickly as it arrives, given the right circumstances. I can’t even begin to count the number of times I have “snapped out of it” when I was feeling so low, so close to the edge. I used to get alarmed, when I would sink so low. Now I am often aware that my depression is a temporary thing, and all I need to do — literally — is get my mind off what’s bothering me, to feel instantly better.
   During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. … Um, maybe for someone who is dying, but not for someone like me who is sinking into a depression over some stupid sh*t that’s gotten the best of ‘em because they ran out of energy and are feeling sorry for themself. It is an important time for grieving that must be processed. But if I stay in it, heaven help me. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It’s natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Or it can show that the person has lost all perspective and is sinking into a hole that they really need to get out of, while they still have some measure of self-control and at least a little access to perspective. Leaving me in a depressed state for an extended period of time is just not good. Fortunately, I usually know how to get myself out of it. In some cases, watching America’s Funniest Home Videos will do the trick — at least then I know I’m not the stupidest person in the world.
5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.” “And there is no way I can avoid this, so I might as well suck it up and get on with what I need to do.”
   In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This is where I get to the point where I can let go of any attempts to block what’s happening and just get on with dealing with what I need to deal with. This stage varies according to the person’s situation. And it can come and go (when you have TBI issues) as quickly as any of the other stages above. Seriously, I can be in a state of full-blown acceptance and peace one moment, then cycle through all the other stages in an instant. It’s crazy-making. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. And people who have TBI issues can never permanently reach this stage. At least, in my experience I haven’t. God, there is a whole lot of old sh*t I still struggle with. I know acceptance is in there somewhere, but it has to share space with the other four stages concurrently.
6. Which leads me to the last stage PIAAGOWYL — Put It Aside And Get On With Your Life. Or P for short. This is the thing I do when I am just done with the suffering, done with the anguish, done with it all, and I just don’t have the strength left to continue on. My brain gets fixed on all those stages, at varying times and to varying degrees, and from one day to the next, I can still be impacted by things that happened to me years ago, which I haven’t been able to get out of my system. The old “shadows” of those raw emotions are still very real to me, and I feel them intensely. I have worked like mad to get rid of them, to work my way through them, but I suspect that my impacted working memory and other memory issues may prevent me from retaining the “lessons” I’ve gotten from “processing” all the stuff before. It’s like I never even learned those lessons, when I am in a certain frame of mind. So I cannot spend a ton of time working my way through them. They’re just there. I just have to move on. I just have to live my life and do what I need to do, regardless of how I feel or what my head is telling me about me and my life.

I’m sure that there are plenty of people who have benefited from understanding and applying the DABDA model. I have no doubt of that. In my case, however, I have to put the emphasis on Putting It All Aside and Getting On With My Life — realizing that “these things happen”, that losses are inevitable, that when it happens, it’s not much f*ckin’ fun, and it’s going to hurt like a bitch, but ultimately I’ve got to just live my life, no matter what. I have to continue to function, even when I’m thrown for a loop. I have to make the most of my life, even when everything is falling to pieces, which often feels like is the case… even if there is no specific event I’m forced to deal with.

See, that’s the other piece of things. I can get sucked into a hole, even when things are good. If I’m tired, and I’m pushing myself, and I’m irritable or agitated, my mood can swing to the south in a hurry. It doesn’t matter that everything is hunky dory around me. I can feel like sh*t at an instant’s notice. All I need is some fatigue, maybe a sugar crash, maybe a bit of psychological catastrophic overwhelm about something complicated that I am trying to get done which suddenly looks like it’s too much for me. Anything can set me off. Anything. I can be sitting talking with someone about good things going well, then all of a sudden, I’m in the dumps… overcome by a thick black cloud of confusion and depression.

But then, just as quickly, the depression lifts — sometimes for good reason, other times for no apparent reason at all. Rather than puzzle over it and try to figure it all out, I just have to move on.

Speaking of moving on, it’s time to get to work.

More later.

I used to care… now I take a pill for that ;)

A little helper…

I recently saw this slogan on a t-shirt, and it made me laugh. And then I found this image >>

It’s kind of how I’m feeling, these days. Work is a roller-coaster with all the changes going on. One minute, I’ve got a promotion… the next, I might be re-assigned to my old work, but I don’t know yet for sure… the next, people are talking trash about me behind my back… the next, they’re all nice and friendly and how-can-I-help-you.

Geez. What a monumental waste of time. I mean, I’ve got to make a living. Everybody’s got to make a living. But doing the whole political dance and song just irritates the living crap out of me.

So, I’m not going to bother. People at work are understandably anxious, upset, etc. I have too much work to do, to get into that. Life goes on. Things change. If someone can decide what the hell they want to happen, and then let me know, that will be great.

I seriously need a pill for this stuff. Because it’s taking a toll on my home life. I have been extremely difficult to live with, for the past few days — meltdowns coming out of nowhere — blindside — and a whole lot of anxiety all around, because of things in the past that seem like they’re happening all over again.

God, what a pain in the ass this TBI business is. I used to be better at this, but in the past years, I’ve become stupidly erratic with this stuff, and I find myself blowing up over stupid things that shouldn’t even phase me. If I could just have some peace… but all around me, I have to constantly parse out the messages and communications and signals from anxious, nervous, frightened people who are doing and saying some very unpredictable things. Sure, I can offer them some reassurance, and they can offer me good information. But it takes a lot of energy. And that drains me. I know I’m supposed to have “peace from within”… But all the extra activity demands more of my energy and attention, and it makes me nuts. It sucks the life out of what I want to be doing, and it just depletes me, so I have even less resources available for my loved ones. My moods are all over the place, my anxiety and temper has been spiking, and I am having trouble sleeping.

Others have this, I know — TBI or not — yet with me it gets so amplified, so exaggerated, and it also brings up a lot of old “stuff” about all the changes that put me over the edge, when I was first grappling with the TBI I had in 2004. That was brutal. Terrible. Life-threatening. And there’s still the residue of that old biochemical crap that’s rattlin’ ’round in my nervous system.

Joy.

If only a pill could make it all go away… but I know it can’t and it won’t. Plus, TBI makes me extremely sensitive to pharmaceuticals, so even if there were a pill for this, I probably couldn’t take it without it completely knocking me for a loop, which is never good.

Anyway, so it goes. Life goes on. Changes happen. The main thing is that I keep calm and centered and don’t lose it over stupid sh*t… and that I don’t project and make all sorts of scenarios up in my mind, which is the most dangerous thing of all. Because then I end up reacting to all sorts of things that never will happen, and I waste a ton of energy on stuff that should not even be on my radar.

The least (and most) I can do is just keep steady and only think about the things that actually ARE happening. Right here, right now, right in front of me. To do anything else, would be punishing myself unnecessarily. And there’s no point in that. After all, when I punish myself, it’s not only me who suffers — it’s everyone around me who has to deal with a lunatic who’s unbalanced themself over nothing much at all.

Ah well. So it goes.

Onward.

TBI Heroes – ‘Cause that’s how everyone wants it

Junior went too soon. Buddy, you are missed.

As I sit here in bed, surrounded by my flu meds and fluids, I have plenty of time to think about things I normally don’t, in the course of my busy everyday life. The (not unexpected) news that Junior Seau had CTE at the time he shot himself in the chest, last May, has been on my mind. A lot.

And as I’ve been weighing the pros and cons of going back to work in time to work a professional conference (we’re talking about 5 solid days of being on my feet, running and working and also doing a presentation for a colleague who can’t make it), I have to wonder what in hell’s name makes me think I should even consider doing this?!

Seriously, it would be madness for me to dive right into that. See, the whole conference thing also includes air travel. In an enclosed aircraft. During one of the worst flu outbreaks in something like 10 years. And it includes being surrounded by thousands of people from all over the country, some of whom may be sick, themselves. And it includes going-going-going for 12-14 hours a day, for 5 days straight. I’ve worked this event twice before, and even when I was hale and hearty and feeling fine, I was completely wiped out by the end. If I push it, this time, then what? I end up back in the hospital?

For what?

Am I insane?

Actually, no. I’m just in the habit of pushing myself. Because unless I push, nothing gets done. See, this is what most people don’t get about me and my situation. I cover things up really well. I mean really well.

Who would ever guess that on any given day I could wake up being so wobbly and off-balance, that if I don’t maintain some contact with an upright surface, such as a wall or a piece of furniture, I’m going to fall over? I’ve learned to mask that extremely well, being ultra nonchalant as I stroll along at a “leisurely” pace. I’ve learned, over the years, how to keep myself upright by keeping a very straight posture – which is probably why some people assume I have a military background – I don’t, they just seem to assume that if I stand up straight I must have been trained. Actually, I have been trained – by life. Because I’ve learned the consequences of not keeping my posture aligned, and it’s no damn’ fun.

And who would ever guess that the “cool shades” I wear are not at all for style’s sake, but to keep myself from losing it over the bright lights all around me? I wear sunglasses in the winter as well as the summer, because the snow is even more glaring on me than summer sunlight. Some days, when I am really tired, any variation in light – a sudden flash or a bright piercing sunbeam – can set off klaxon alarms in my head.

Noise, too — there’s nothing like having the voices of your loved ones turned into spikes driven into your brain, because you’ve reached just the right level of fatigue and sensory overload. Not being able to listen to the songs sung by one of your sibling’s kids, when they just put something on YouTube and they want to sing it for you in person… that’s a pretty lousy way to spend a Christmas afternoon.  Of course, you can’t let on that you’re baked, you can’t tolerate any more noise, and if anyone says one more thing to you, your head is going to implode. You just suck it up and move on. You think of other things. You put on a happy face. You keep going and keep smiling.

Because that’s what everyone needs.

They don’t need to know the gory details of how you haven’t been able to sleep a full night for months, now…. and how everything that touches your skin feels like it’s burning through to the bone… and how the ringing in your ears is drowning out everything, which is why you have to keep asking people to repeat themselves… and how you haven’t actually understood much of what anyone has said to you for the past two hours, and most of the stuff you did understand, you’ve since forgotten. People don’t want to know about that. They don’t want to know about the increasingly frequent memory lapses, the flawed judgment calls, the time management issues, the distractability. They don’t want to hear about how bone-tired you are, how confused you are, how frustrated you are with every damn thing that comes across your path.

They don’t want to know you’ve been simmering at a near-boil for days on end, now, blowing up at the people closest to you, because you’re so fried by all the sensory overload and the fatigue and the defeat of never being able to out-run or out-maneuver these things. They don’t want to know that as much as you might get a bit of relief, now and then, the issues will still be back later, and you can count on that. They don’t want to know about the jumpiness, the hair trigger temper, the flashes of rage that tear through your insides like fire across a dry prairie. They don’t want to know about how you’ve used just about every “tool in your toolbox” to keep it together, but things are raveling just a little bit thin, these days.

Nope. They don’t want to hear about that — any of it. Especially if they know you as a can-do type of person who always manages to figure things out. If you’re the go-to person in their life, they depend on you NOT being any of the things you actually feel like, day in and day out. And God forbid you should ever speak up and ask for some help.

Because when you do that, they either laugh at you, or they get freaked out, because nobody — but nobody — can seem to hear anything about TBI or concussion or any other sort of brain issue, without thinking about themself and questioning themself and confronting the bare-ass fact that deep down inside, the heroes are still human.

I’ve been a hero for a long, long time. At work, I’ve often had a sort of “folk hero” reputation for having accomplished the things I did. Because I never gave up. Because I looked the beast in the eye and still moved forward. Because I took on projects that others ran from, and I made it all work in the end. I’ve been a champion for as long as I can remember, and I’ve been rewarded for it, too.

So, when I fell in 2004, and that all started to unravel, the hammer came down pretty hard. I was failing. I was coming up short. I was not living up to expectations. And that was unacceptable. People talk about how you shouldn’t be afraid to fail, how you shouldn’t be afraid to come up short sometimes. Those people write books for a living, clearly, and they obviously don’t have their level of compensation and their family’s welfare on the line, every time they are tested. Those people piss me off. Because the ones who write our paychecks (and often have us by the short-n-curlies) attach a price to our performance.

Not only that, but the whole world around us attaches a price to our performance. And this is the thing that makes me absolutely nuts about the people who go on and on about how “formative” failure can be. Yeah, homelessness is formative, too. As is long-term unemployment. The price of failure in today’s world is NOT just popularity — is is your very way of life. It can even be your life. Period.

And how much moreso for someone like Junior Seau? Someone on whose shoulders so much rested — the restaurant, the foundation, the reputation…. Someone who had flown so high, and was never going to fly that high again, as far as he could tell. To grapple with the things I’ve got going on, in my low-profile life as just-about-nobody, is hard enough. But to do it in the glare of the public eye? How the hell do you do that?

Maybe, you just don’t.

And in all the talk about Junior Seau’s death and CTE and changes that need to be made to football, the thing that’s been missing for me — the big, big thing that seems like it might actually make a substantive difference in all this — is how people with brain injuries are treated… How anybody who doesn’t “measure up” is treated by once-adoring fans.  Once you set the bar high, it’s your job to keep out-doing yourself and keep it moving ever upwards, ever onwards. But that’s a fantasy and a myth born of Hollywood and personal improvement gurus. And it puts the onus of keeping your shit together on the person who might actually need the most help.

If the truth be told, we live in an exacting and unforgiving society. I have no idea how we got to this place, where everyone seems to need to believe they are invincible — or could be. And I have no idea how we have created a culture where it is perfectly okay to punish those who don’t live up to our expectations, as though they were homicidal criminals. Life is full of disappointments. And yet we carry on as though we should never, ever be disappointed, and we should always get exactly what we want, because we “deserve” it.

What exactly do we “deserve” anyway? That others meet our fantastical expectations in every way, until the end of time? Who says anyone owes us that? Who says we are entitled? The thing of it is, most of us structure our lives around the roles we play and the ways we fit into each others’ lives, within those roles. So, when our abilities change and we need to adjust our roles, it can be terribly frightening for others to deal with us. Because a change to us is a change to them. And if they’re not ready to shoulder more of the “load” of making sense of life with their own resources (rather than ours), then the loss of our presence in their lives in that certain role, can be terribly frightening, disorienting, almost incapacitating.

How very human of us.

I guess in the end, there are no easy answers, and it’s simple enough to get upset and pissed off over sad things that should never have happened, but did.

When all is said and done, the fact of the matter is, some of us are hero material. For one reason or another, we have learned how to push ourselves through thick and thin… and come out victorious on the other side. Some of us know how to put aside our own personal safety and well-being for the sake of others. And some of us are in the habit of doing that on a regular basis. Now, I’m no firefighter or first responder or doctor without borders, but I am in the habit of putting the needs of the many over my own individual wishes and needs. And it’s served others well over the years.

Now, with this flu still raging, I’m doing a reality check and seeing quite clearly that this is no time to be a hero. If can’t do the job at the conference next week, someone else is going to have to take my place. There may be others working the event who are also sick and choose to work it, anyway, but this one I’m going to have to sit out. I hate the idea and it goes against everything in me, but I’ve just got to do it, this time.

It’s not what I want. And it’s not what the folks I’m working with want. But it’s what’s got to be done. This one time, I don’t have to be a hero.