Good gone bad in a hurry

Bummer… and things were going so well

So, last night I was fixing supper, and I messed something up. My spouse was in the kitchen with me, and they started saying things that sounded critical to me, like they can do better than me. I got really agitated and frustrated, and I had a bit of a blow-up at them. I was really angry over them finding fault with what I was doing and comparing their own performance to mine. It was a double put-down. 1) I screwed up, 2) they can do so much better than me.

It really pissed me off, and I got so angry, and then they went into their usual behavioral “repertoire” of acting like I was a bad person for getting angry and yelling — like I was threatening them and being abusive. Oh Lord, oh Lord, oh Lord… I was upset and trying to express myself, and all they could do was make me look like I was the one at fault, and my anger was a threat to them.

I got pretty angry — not over the top, throwing-things angry, but so frustrated and agitated that I almost couldn’t see. And then POP, something in my head felt like it snapped, and I had this sensation of my brain locking up and slowing down to a crawl. It was like someone cracked open a smelling salts capsule — but it had the exact opposite effect. I instantly felt dull and numb, with my face numb and tingling, and my hands tingling. I could physically feel it in my head. I turned into an instant idiot — it was hard for me to understand what was being said, and I couldn’t put words together. My head felt like it had filled up with cotton, and I was suddenly so dull.

I didn’t think it was a stroke, because I haven’t been impaired on one side of my body or the other — and I stuck out my tongue to see if it bent from one side or the other, and it didn’t.

Then again, according to the National Stroke Association, here are the signs of stroke:

Stroke symptoms include:

• SUDDEN numbness or weakness of face, arm or leg – especially on one side of the body.
• SUDDEN confusion, trouble speaking or understanding.
• SUDDEN trouble seeing in one or both eyes.
• SUDDEN trouble walking, dizziness, loss of balance or coordination.
• SUDDEN severe headache with no known cause.

So, maybe it was one. I don’t know. One side of my body wasn’t weaker than the other, which is what I usually associate with stroke. I have a meeting with my neuropsych this afternoon, so I’ll check with them. I’m hesitant, because I don’t want trouble from all this. Plus, it has happened to me before — about 3 weeks ago after a meeting when I got really upset with the behavior of some of the folks in the meeting. It was very similar to that time — I felt something “pop” in my head, and I turned into an instant idiot — couldn’t put words together, had trouble speaking, felt slow, and had a low-grade headache.

This time I didn’t get nearly as angry. But the feeling was the same, and now I’m dense and dull and I’m having trouble putting words together. Three weeks ago, it passed. And it didn’t seem like a big enough deal to investigate. It was not much worse than other “episodes” I’ve had in the past, and when I tried to investigate them before, nobody seemed to think they were that big of a deal, and I felt like an idiot for even bringing them up.

I know I’m supposed to go to the ER as soon as I suspect I’m having a stroke, but how would that work, exactly? I can’t miss work, because then I don’t get paid. And my mortgage won’t wait. I’m the only one who’s supporting my household, and if I’m out of work, we’re all pretty much screwed.

I started to get a headache after a while, last night, and I took some Advil, but it didn’t really help. I still have that headache in the front and top of my head, and also towards the back where I hit my head on Saturday.

Seizure? Stroke? Whatever. I’m sounding a little nonchalant about this, I guess, but my feeling is that this kind of stuff has happened with me so often over the years, it’s just one more thing. And even if I did have a stroke, I know how to fix my brain, and manage my issues, so I’m not all that worried. Hell, even if I do become really hampered by my brain, I know how to live my life in a way that brings me happiness and joy. I know how to bounce back and keep going, so I’ll just keep doing what I’ve been doing.

I am reminded of a number of things I need to do is stay vigilant about:

1. Remember that my spouse is actually mentally ill. Their panic/anxiety disorder has wreaked havoc, and it is a genuine mental illness. They seem to believe that their anxiety is keeping them “safe” from whatever dangers may be out there, and the “help” they are getting from friends and their therapist seems to only reinforce their fears and their devotion to their “precautions”. They are so absolutely imprisoned by their fear about every conceivable thing on the planet, that anyone around them has to abide by their brittle rules or bear the brunt of their wrath. They feel safe when everything is going their way, but it’s absolutely smothering and restrictive for anyone who does not share their view.
2. Underlying all this anxiety is a handful of neurological issues which are screwing with their thought process. It’s not something I can take personally, when they go off on me. I love and adore my spouse and would love to spend more time with them. Still, it’s really hard to be around them. The other thing that makes it all hard, is that I’m just about the only one who can spend any extended time around them — they’ve chased off just about everyone else with their anxious control. And they don’t understand why that is. Explaining won’t make any difference, because to them, their fears all make perfect sense — and it’s neurological. So there’s only so much explaining I can do.
3. I need to take care of myself and get what I need for myself to stay strong. I was tired, last night, and I pushed myself too hard. I need to back off and take some time to myself, especially when I spend extended periods with my spouse. My spouse and I had gone for a drive earlier, yesterday before my outburst, and they are so anxiety-ridden about just about everything, that it’s very stressful to be around them. It’s like a never-ending drama — over huge dangers and threats which seem like they’re nothing to me. When I do the driving, they constantly boss me and yell at me about how I drive, where I should turn, what I should do. It’s a total friggin’ drain.
4. I need to keep to a regularly active schedule. I was out of sorts already, last night before my outburst, because I was off my regular schedule. I also did not expend enough energy over the weekend and wear myself out physically. I need that. I need to keep active and tire myself out, so I don’t think too damn’ much.
5. My spouses’ way of living is not healthy — for them or for anyone. They spend a lot of time sitting around thinking about shit that makes them crazy, and they end up pulling me into their undertow. When I am around them, they use me as a “sounding board” which just sucks me into their downward spiral. This is not good. I need to keep myself up and elevated and healthy and take regular breaks when I spend a lot of time around them.

Truthfully, I actually need to protect myself from the one person I love with all my heart. It’s kind of tough, but there it is. If I can think of it as protecting myself from the demons that are eating them alive, that’s a better way to look at it. But it’s still very painful to watch them on that downward spiral, and be helpless to do anything about it.

Having extra days off can be good, but they can be be bad, too.

I just have to keep all this in mind and take the best care of myself that I can.

My head hurts. I’m foggy and dull… and a little bit afraid of bringing up the episode last night with my neuropsych. I’m afraid of what might happen if they tell me to go to the hospital and get checked out. But at the same time, if I don’t get the help I need, then what?

On the bright side, I’ve got almost four months’ worth of pay stashed in the bank, so if I do have to take some time off, I can. My mortgage is taken care of for the next month, and I’ve got enough to at least keep going, if I need to take some time.

Ideally, it won’t come to that. But when I think it through, the fact is, I can afford to take a week (even a month) off work, if I have to. I could even go to part-time for the short term, and we’d be okay for at least three or four months.

Anyway, speaking of work, I’ve got to get going. My fingers aren’t typing very well, and I’m fortunate to work with folks who have never seen me at my peak, so they have no idea just how impaired I am, right now. I’ll just get through the day, talk to my neuropsych, and try to keep as clear as possible, so I can make the right decisions and do the right things.

Main thing is to keep chilled out and cool. I’m really bummed out that I couldn’t even make it through a weekend with my spouse without yelling and getting upset. We were doing so well… that is, I was doing so well. They were doing really shitty. But all I can control is myself. So, I have to take care of what I can control — myself — as much as humanly possible.

Screw it. Onward.

Body practice for brain improvement

I’ve added a new piece to my morning/evening routines — when I am about to brush my teeth, I pull my toothbrush out of the holder and toss it from hand to hand. Sometimes I flip it around and try to catch it. Sometimes I can, sometimes I miss… drop it, and have to wash it thoroughly before I brush my teeth.

But I have noticed my hand-eye coordination improving. And my response times improve, as well. Also, I have noticed that I have been able to catch things that I start to drop more easily than ever before.

Like silverware falling out of my hands and headed for the floor — I have caught them several times.

Like a travel mug full of coffee that tipped over, and I was able to right before it spilled all over the place.

There have been a number of situations where my eye-hand coordination is definitely better than I can remember it being for a while – perhaps if ever. I was very active as a kid and played a lot of ball games, but I was a little spastic and had trouble coordinating my movements.

And I was convinced I could not juggle, because I was so “dorky”. I was convinced I was a lot of things (not all of them flattering) because of my coordination problems. My issues were probably a lot less than I believed they were, but because they didn’t match what I was expecting, I considered them terrible.

And I kept myself from doing a lot of things, because I figured, “Well, that’s just how I am, and I have to live with less as a result.”

Sad – pretty much of a waste.

Now things are different. Now I’m not convinced that anything I believe about myself is actually true. I’m questioning it. Trying new things. And discovering more things about myself than I ever did before.

Juggling helps me. Even just tossing around a pen is beneficial.  How?

1. It improves my eye-hand coordination. I am getting better at catching things I toss from one hand to another. And when I spin the thing(s) I toss, it challenges me. I have dropped a lot of things, but I am getting better.
2. It improves my self-control. When I drop things, I typically get very upset and start to blow up (inside mostly, sometimes outside). This is very disruptive. Knowing that I am practicing keeps it chilled out for me. Tossing a non-essential object, dropping it, and then practicing self-control and not flying off the handle, is helping me in my everyday life, when things go wrong unexpectedly.
3. It improves my sustained attention. I can focus for longer and longer periods of time. I notice that I drop things when my attention wanders. Focusing on the object I’m tossing from hand to hand for a few minutes… then a few more minutes… then a few more minutes… is helping me to stay focused longer.
4. It teaches me to block out distractions.  This is different from sustaining my attention. It’s one thing to lengthen the amount of time I can focus single-mindedly on something. It’s another thing to know how to block out sudden distractions that pop up into my field of view, or come to mind. Most of my distractions actually come from inside my head. I’ll start thinking about something else… and then I’m toast. I drop what I’m trying to catch. Or I toss something in the wrong direction. Practicing tossing things from one side to another — and most of all practicing not getting my attention pulled away — has actually helped me a great deal.

Recently, a reader posted a comment:

I saw a documentary on the brain and neuroplasticity and heard that juggling tennis balls can improve executive function.
I think it worked:
It only took the (uninjured) guy in the movie one practice session to be able to juggle several tennis balls.
It took about 2 months for me to be able to consistently juggle one ball.
I could only do a few minutes once or twice a week because it used so much of my brain energy.
After a few weeks I noticed my thinking seemed faster and switching between tasks was easier. There was also a measurable jump in my typing and reading speeds.

Now aprox 3 months later; I still do a few minutes, two times a week, but can use 2 balls. I just tested my typing speed again and it is aprox. twice as fast it was when I started the juggling exercise.

It’s worth a try: low cost, no side effects. Be aware that it took lots of patience and really used up a lot of brain enery when I started (so plan accordingly), but it got easier.

This is WAY cool. As they said, it is low cost and has no side effects — other than improvement in important areas.

It also takes a lot of brain energy at the start — I can also attest to that, because when I started tossing my toothbrush from hand to hand, first thing in the morning, I dropped it a lot, and spent a lot of time rinsing it off. (Why did I used my toothbrush? Because tossing something important raised the stakes and forced me to pay close attention.) It was very challenging when I started, to tell the truth.

But bringing in a tennis ball has expanded this — and it’s something I can do just about anywhere, just about anytime. In fact, I sometimes take a break at work to go to a quiet room and toss a tennis ball around. I may just add another ball to it and practice juggling.

Now, it’s all very well and good to learn how to juggle. It’s fun. It aids neuroplasticity. And it will be an accomplishment, if I ever manage it.

But the real benefit is not the juggling ability alone. It’s the psychological, experiential, and behavioral benefit I get from it.

Having better eye-hand coordination can reduce the number of “clumsiness events” in my life that not only drive me crazy but make me feel stupid and dim.

Being able to catch a tipping cup of coffee — that I can’t afford to spill — is a huge boost to myself-confidence. And it also spares me the internal storms of anger, range, frustration, and self-recrimination. It’s also good for my self-image, which can use a lot of help.

Being in better contact with the world around me, and having a more fluid interaction with my physical environment can offset the effects of my dizziness and the times when I am “off” — for one reason or another. Developing my coordination, my muscle memory, my ability to skillfully adapt to sudden changes in my environment… it’s all good, and it only helps me.

Overall, the strangely wonderful side-effects of tossing objects from one hand to another are helping me feel better about myself, feel like less of a klutz, and make me more relaxed and at-ease with the world around me.

And that’s a good thing.

So, onward…

 

 

Tap those brakes…

Just a touch – not too hard – don’t go into a skid…

One thing I’m very grateful for, is that I have not been very sick at all, this past winter. This is a change from other years, when I would get very sick at least once — often twice or three times — and spend a lot of time in bed and/or recovering after the fact at maybe 2/3 of my real ability.

This year, I have a slightly different challenge — things are going so well for me, and I have so much to keep me busy, and I am functioning so well, that I am pushing myself much too hard, and it’s dragging me down.

I’m doing it to myself, really. And it’s no fun.

Yesterday was a tough one for me. The morning was full and pretty packed with intensity. I had a deadline to meet, and the folks on my team who were supposed to work with me to get there, were making extremely poor decisions. Their work product was substandard, and they were telling me that insisting that things work properly was unrealistic and out of line.

Well, okay then.

I did as much as I could, I sent an email to my boss explaining the situation, in case they caught hell for the result — which was entirely possible. It wasn’t about “tattling” on anyone, just giving the person in the line of fire the right information to defend their position — which is always a likelihood where I work.

After that, I checked out for the day. I set my out of office message for noontime on, then I logged off around 2, took a shower, and went to bed. I was incredibly dizzy and seriously wired. All the frenetic activity of the past several weeks, without any serious extended downtime (as in, more than several hours at a time), has kicked my ass. I felt like crap, and I just couldn’t do it anymore.

So, I crashed. I got about an hour of sleep, then I lay in bed reading FB and news. After a while, I got up and decided I needed to ride the exercise bike, because I needed to move some lymph. The lymphatic system is what moves waste out of our systems, and it doesn’t move on its own. Circulation moves it, so if you’re sedentary and you’re not moving very much, you end up with a bunch of gunk in your system. It’s basic physiology/ physics. If you want to feel better and take a load off your system, get your heart rate up and get your blood pumping, and the lymph will clear out the crap.

When I got downstairs, my spouse was there and they started to ask me about things I was supposed to do for them, over the past several days. I have had no time to do much of anything, other than work-work, as well as take care of myself, and it really pissed me off that they couldn’t say anything to me without it adding crap to their endless honey-do list. I swear to God, I get sick of being treated like “the hired help” at home. I don’t have any other use and purpose, other than doing my spouse’s bidding? Geez.

So, I snapped and went off, and of course I looked like the crazy person, because I was just so beside myself, with being so dizzy, not feeling well, and not feeling like I can ever get a break — especially in my own home. Everybody wants something. Everybody needs something. And because I’m able to give everybody just about everything they want, just the way they want it (that’s been my bread-n-butter for as long as I can remember), the requests just keep on coming.

When I protest and put my foot down about everybody pulling on me and demanding sh*t from me, everyone wants to know what I want from them.

Here’s the thing:

I DON’T WANT ANYTHING FROM ANYONE.

I WANT TO PEACEFULLY CO-EXIST WITH OTHERS IN A NEUTRAL SPACE, TO LIVE MY LIFE FREE OF OTHERS’ CONTROL AND JUDGMENT AND MANIPULATION.

I WANT TO DEAL WITH PEOPLE AS AUTONOMOUS ADULTS WITHOUT A HIDDEN AGENDA.

I WANT TO DEAL WITH PEOPLE WHO ARE EMOTIONALLY SELF-SUFFICIENT AND DON’T WANT TO USE EVERYONE ELSE AS A CRUTCH TO SHORE UP THEIR FLAGGING SELF-ESTEEM.

I WANT A BREAK FROM BEING EVERYONE’S “SAFETY BLANKET” AND I WANT PEOPLE TO LEARN TO FEND FOR THEMSELVES AND APPROACH ME AS ADULTS WHO ARE ABLE TO PROVIDE FOR THEIR OWN SENSE OF SELF, WITHOUT DEMANDING THAT I DO IT FOR THEM.

I have no need to control others. I have no need to manipulate others. I am wholly capable of knowing who I am and supplying my own self-esteem and going quite happily about my business without needing to be constantly reminded by others who I am, what I’m about, what matters to me, what my goals and values are, etc. etc. etc.

And I am sick and tired of being surrounded by others who can’t figure that sh*t out. At home. At work. Out on the street. In groups of friends and acquaintances. They’re everywhere.

I swear to GOD, I have had it up to here with people who just help themselves to other people’s energy and attention, like it even belongs to them.

It doesn’t. My energy and attention is my own, and they can’t just waltz in and help themselves to it.

And I deeply resent others who have such a sense of entitlement to my energy, my attention, my focus, my help.  Friggin’ vampires.

Yes, I make them feel better. Yes, I help them feel more balanced and confident and self-assured. But what does it do for me? Not a damn’ thing. If anything, it just drags me down and prevents me from taking care of my own stuff.

And I fall behind. And I get overwhelmed. And I run out of energy. And I end up extremely dizzy with a splitting headache and a foul temper that just makes me feel like crap after my outbursts.

Which is really bad for me.

And it cannot stand.

So, clearly I need to change the way I do things and get my act in order. Gotta draw some boundaries and take care of my own damn’ self. And I can’t do that, if I’m exhausted and completely depleted by other people’s draining needs.

I’m feeling better today — more rested, after getting to bed relatively early last night. I was in bed around 10:30, which is about where I need to be. I woke up around 4:00, which meant I got 5-1/2 hours of sleep, which is NOT enough. But instead of getting up, I just lay in bed, relaxing. I just lay there in the warm bed and breathed… paying attention to how I was feeling, and consciously relaxing.

It felt pretty good, too, and although I didn’t get back to sleep, at least I was resting. And when I got up, I felt better.

I really need to get back to listening to Belleruth Naparstek’s “Stress Hardiness Optimization” CD. It’s designed for first responders and other folks in high-stress situations, to help them relax and overcome the negative effects of stress. I used to listen to it all the time, then for some reason I took it off my smartphone, and I replaced it with the soundtrack of “The Crow”. If you know the death-metal soundtrack to “The Crow”, you know what a 180-degree turn this is.

And you know how much sense it makes, to swap out the listening material on my smartphone…

Anyway, these are just things I need to address, and I’ll address them. I’ve got a lot of problems that are really good problems to have — a job that challenges me on many levels and has a ton of opportunity… a house that needs to be taken care of… a marriage I need to sustain… and time that I need to manage properly.

I just need to make sure that I don’t overdo it.

Well, it’s time to get going. The day awaits.

Onward…

Whew – that was close!

Last Friday I had probably one of the worst days at my job. I got lectured by my boss about having done something that got them in trouble with their boss, and it threw me for a loop. So, I wrote this angry, rambling post about what a jerk they are, telling the world that I realized that many of the issues I’ve been having at work with them may be less about my problems, than theirs.

At the time, it felt really good to vent. I felt 100% justified, and I felt like I was coming to my own defense against injustice. It felt good to announce to the world that my boss is a jerk (I used much harsher terms, actually) and vindicate myself in the face of their (seemingly unwarranted) criticisms.

Fortunately, it turns out, I never published the post. It’s in draft status in my blog. And I plan to keep it that way. The thought occurred to me to delete it, but it’s a good reminder of how I can get really carried away when I’m tired and feeling pressured.

See, here’s the thing — the whole rage and temper and meltdown business is one of the particularly problematic things about TBI. At the time, when all the fight-flight chemicals are rushing through my veins, it makes perfect sense to my brain to fly off the handle. Impulse control goes right out the window, and the idea of NOT doing something rash is the farthest thing from my mind. It feels right and good and justified — it feels so right, how can it be wrong?

Well, it CAN be wrong. If only because feeding into it is going to cause even more trouble, on down the line. It’s bad enough that I had a bad day. But if I’d managed to publish that post, I would have not only spread the badness to everyone who was reading it, but I would have also had egg all over my face. Because in retrospect, they were a little right about what they were lecturing me about. They just did it in a way that I found humiliating, disrespectful, condescending, patronizing, and all the other attitudes that are hot-buttons for my temper.

And that will never do.

I’ve been thinking a lot about this list of questions people have been typing into search engines that get them to this blog. Rage and anger, temper and road rage, are frequent items. I think I’ll step on over to the post Quick responses to loaded questions and continue adding…

Everything changes – let’s get past the guilt

Just look around… Seasons change, the world changes, political movements rise like tides – or tsunamis – and people change.

That includes people with traumatic brain injury. When you injure your brain, whether you know it or not, something has changed. Sometimes the change is extreme and immediately noticeable, and sometimes it’s hidden and the changes emerge only after weeks or months, even years. And if that change has been gradual and practically invisible (either because the physical changes evolved over time, or the TBI survivor is not well able to detect those changes on their own), it can be incredibly daunting to understand just what those changes have been, and what you can do about it.

At times, it may seem like nothing  can be done about it. Especially if the changes are gradual and fundamental — personality changes taking place over time in ways that you can’t exactly pinpoint when/where/how it all started. Going from being an even-keeled, easygoing individual… to an anxious, agitated person with a hot temper that will come out over nothing at all just when you least expect it. Going from mellow and easygoing to uptight and raging is a pretty extreme change, and it can look like it’s impossible to ever make it back to mellow.

But things change. People change. I’ve changed an incredible amount, just in the past three years. In the past six years, actually — the first wave of change was a result of my TBI in late 2004. And the second was as a result of my rehab. The first wave of change was unexpected and constantly traumatic in large and small ways. The second wave of change was planned and hoped-for, but to be honest, I’m not sure anyone but me really expected it to happen.

Those closest to me who saw the initial extreme changes in my behavior after my fall in 2004 were deeply skeptical about my recovery. They had to live with me on a daily basis as I became increasingly erratic, agitated, and withdrawn (and a little bit dangerous, to be honest). They were the ones who had to deal with this new person I’d become for reasons they could not understand. They were the ones who bore the brunt of my erratic behavior, my temper outbursts, my hurt and rage and fear and anger and lack of impulse control. They were the ones who had to deal with me flying into a rage, throwing things, attacking them verbally, and doing things that hurt them on a much larger scale — losing my good job and not being able to hold down steady work for longer than a year or so, not managing money, not taking care of the house, not being a present and responsible family member.

All the while they couldn’t protect themselves from that, because if they said anything, I would fly into a rage with them and become even more unpredictable.

The ones who were affected like this have had the hardest time seeing the potential of my recovery. They have hoped for precious little, to be quite honest, having seen how bad I could get. They got into the habit of handling me with kid gloves, treating me like a mentally impaired loser who needed to be coddled and kept cool at all costs. They had gotten used to the routine of carefully checking me out to see how I was, and then walking around on eggshells to keep me calm and non-agitated.

The human brain is an amazing thing. It watches for patterns, it identifies recurring dangers and situations, and it reorganizes your behavior in order to minimize risk and maximize safety. And the brains of those closest to me had become reorganized around the idea that I was pretty much a lost cause who would generally give things a good effort, but would never really amount to anything, and who would — as likely as not — end up in a temper flare-out that ended badly for everyone.

You know, it’s interesting how nobody really seems to talk about mood problems and anger/temper outbursts with traumatic brain injury. At least, not while the person is alive. One of the remarkable things about reports about CTE (chronic traumatic encephalopathy – the brain disease similar to Alzheimer’s that has been found in the brains of former pro football and hockey players — as well as a student football player), is that just about everyone talks about crazy-ass mood and behavior changes taking place after the person is dead and gone. But while the person is alive, there’s nary a hint that something is amiss.

Take for example  Shane Dronett, Bob Probert, Dave Duerson, and many other players who have posthumously been diagnosed with CTE. During their downward spirals, their situations didn’t make the news. Part of that, I’m sure, is because their falls from grace — erratic, violent behavior, business failures, unemployment, ending up living in their cars, in and out of jail — are not the sort of thing that people want to think about. Especially if it’s apparent (as it often is) that their situations arose from their former jobs of keeping us entertained by sacrificing their bodies — and brains — without any regard for their own safety. There’s a guilt that is never quite articulated by society at large, not to mention the families and friends of those in trouble.

Society has a hell of a time accepting these sorts of dissolutions. And friends and family too often feel responsible, as though they’ve somehow brought the violence and outbursts and erratic behavior upon themselves.

And then there’s the guilt of those who ARE in trouble — the confusion, the frustration, the anxiety, the depression. The constant trying to make it better, followed by recurring failures. Guilt and shame. Resolutions to try again… and then abject failures that can’t be explained.

One of the worst things about TBI is how it can strip you of your dignity. And when the people around you see — and are horrified by — your descent into behavior that is so “unlike you” that shame and guilt can be well nigh impossible for anyone to get past. People look away from what makes them uncomfortable. They distance themselves from aberrations. Want to become invisible? Present as someone with a disability of some kind, and watch people avert their eyes. Like Kevin Spacey’s character in The Usual Suspects, if you exhibit some sort of behavior that makes others uncomfortable and you don’t seem to be able (or willing to) change it, you can find yourself marginalized pretty quickly.

The problem with all this is that with TBI, one of the most important elements to recovery is social interaction. Connection with others. The ability to have community and connection with others. We are social creatures. We crave connection. Our brains are social organs that grow and change and adapt, based on social interactions. And when we are pushed to the side, marginalized because of our perceived differences, it just makes matters worse. It doesn’t give us a chance to come back to a place where we can be the persons we want to be, instead of the persons the TBI ushered in. It doesn’t give us a chance to practice our “social chops” and grow and improve and change for the better. Without feedback of some kind that tells us when we’ve succeeded or fallen short, recovery stays elusive. The traits and qualities that head trauma ushered in have a way of cementing themselves in place, essentially becoming the “us” that others decide we are.

That’s probably one of the most unfair phenomena of TBI — having others make up their minds about us as being a certain way after TBI, and deciding we’re not going to change, and they need to just get used to us being a certain way. When others do this, and they decide that we’re not going to change, we can get locked inside a prison of human making. It may feel safer for the people around us, if they develop these defense and coping mechanisms, but in the long run, it just makes matters worse, because it allows no room for recovery, and it locks everyone in a pattern of behavior that is far less than it could be.

It’s true — we will probably never get back to the person we were before. But that doesn’t mean we can’t become a different person of our own choosing and our own making. When we decide things aren’t going to change, and we resign ourselves to “accept the new normal” of limited options and curtailed activities, and we stop looking for what else is possible in our lives, we are neither fair nor honest with ourselves. And when we decide that injured others are permanently disabled and need to be handled with extreme care, we are giving up and consigning them to a prison of our making.

Change happens. Change is constant. And people change as much as politics and economics and fashion. We change in relation to events, but most of all in relation to others.  We mirror others. We connect with others. We evolve with others. And even in the aftermath of events that harm and hurt and kill, we can continue to change. Grow. Improve. Worsen. Deepen. Become more complex. Become more simple. We change.

But we need to be connected somehow, in order to do that.

Brianline has a great slideshow about a young woman named Freda who sustained a traumatic brain injury in a freak accident – click here to watch it. Perhaps the most remarkable thing about it, is how Freda’s friends rallied to keep her integrated into their social life, even though she was far removed from the flow of everyday life. Her family stayed with her. Her friends didn’t ditch her. Her teachers and healthcare providers worked to educate her peers about TBI. The community came together around her. And she came back.

For me, the connections that have kept me going  have been largely virtual. Connecting with people online — just about the only place I could find others who understood what I was going through — as well as one single neuropsychologist who didn’t treat me like a drug-seeking insurance fraudster who was just trying to get over on the system. I couldn’t really connect with my friends and family, because they were — and still are — really put off by the very concept of brain injury, and a lot of them had made up their minds about me a long time ago and still remain quite dependent on that interpretation of who and what I am.

The other way I’ve managed to connect is through work — the people at work, as well as the work itself. In that controlled environment, where I actively interact with others for 8 hours a day, five days a week, doing work that refines and educates me, I find a connection and a purpose that often eludes me beyond the workplace. When I haven’t been able to stay on for very long (because my anxiety level was getting so high, I couldn’t think straight anymore), I’ve been fortunate to be able to find new work, different work, to help me along. In the workplace, where I am required to interact with others, I find connections that often don’t present themselves in the rest of my life.

One of the important differences between work and my outside social life, is that there’s no room for guilt. There’s no room for sitting around feeling self-conscious. If I’m going to do my job and be fully effective, I have to engage with others on a regular basis. I have to get over my personal crap. I have to be a part of things. Or else. There’s not a lot of room for self-pity and drama. I know plenty of people who do indulge in those things at work, but for my own purposes, I can’t afford it. I have too much to do. I have too many things on my plate, to get caught up in personal dramas. It keeps me busy and it keeps me honest, and I have to constantly improve, or I sink like a rock.

The nice thing is, others at work can see I’m actively working at this. TBI doesn’t factor in at all in our interactions, because I have never discussed my situation with anyone at work, and I never will. It’s not something that needs to be part of that equation, and the last thing I need is to have to field all sorts of ignorant biases about what brain injury does to a person. It’s enough that I do my job and I do it well. The rest of it stays to the side.

And it’s tremendously freeing. Because I’m not locked away in a box made from other people’s assumptions about me and my prospects for change and growth. I’m not living under the shadow of my wary spouse who detects agitation in me and automatically begins to act like I’m a menace. I’m not constantly trying to prove to my loved-ones that I am capable of change, and that they don’t have to give up on me.

I can be who I want to be. I can be the person I choose to be, not the person others decided I was, 5… 10… 20 years ago.

People change. TBI changes people, but we can continue to change for the rest of our lives, regardless of initial setbacks. We may never go back to being the person we were, but that’s what happens with everyone, traumatic brain injury or no. Ask anyone about the kind of person they were when they were 20 years younger, and they’ll likely tell you they’ve changed a lot since then. If they haven’t, they were either uniquely evolved in their youth, or something has stunted their growth.

It’s in our nature to change. It’s in our nature to grow. It’s in our nature to improve, should we set our minds to it. With TBI comes a host of problems and issues — many of them emerging and sticking around, weeks, months, years after the injury itself. The guilt and shame and embarrassment can be pretty intense — for everyone. When you’re “not supposed” to do/say the things you are doing/saying, it can be pretty distressing for everyone. But you can’t let the distress get in your way. You just have to keep steady, keep an open mind, and keep following through to learn and grow and change for the better.

TBI does bring change. But it needn’t be a death sentence. Mild TBI needn’t derail your life, for no apparent reason. Blast injury has its own set of unique issues, but doesn’t need to destroy your future. And concussion can be profoundly disruptive, but it needn’t isolate you from the world for good.

Stay steady, stay open to change. And find out what else is possible for you and the ones you care most about.

Snap! Anatomy of a TBI temper flare

If you’re a TBI survivor, you may be very familiar with the flares of temper that can sneak up on us unawares. It is very disconcerting, if you’re a pretty even-keel sort of person, or if you really don’t want to pitch a fit, but find yourself flying off the handle against your own will.

This has happened to me as long as I can remember — temper flares that come out of nowhere and decimate not only my relationships with people around me, but my self-esteem and self-confidence, as well.

I recently wrote a post called One Potato, Two Potato… that talks in greater detail about my experience of an intense temper flare that builds up over time.

I actually have identified a number of different kinds of flares I experience:

1. Flares that originate inside me – and come up suddenly without any warning
2. Flares that originate inside me, but percolate and develop over time, till I boil over. (That’s what One Potato, Two Potato… is about)
3. Flares whose source originates very suddenly outside me – they’re knee-jerk reactions to external conditions that actively provoke me.
4. Flares whose source comes from outside me that percolate slowly until I boil over.

There are other ones, as well, and I’m devoting a fair amount of my time, these days, to thinking about them. Of all the cognitive-behavioral issues I have, my temper flares are some of the most challenging. And since so many people reach this blog by searching for info on TBI and temper, I know I’m not the only one.

For the uninitiated, here’s a general description what happens in one of my TBI temper flares, how I deal with it, and how I pull out of it:

1. I have a goal in mind — it can be as simple as picking up a pencil, or as complicated as making a three-course dinner.
2. I turn my attention to the thing I want to do… think about doing it… think about not doing it… and then I decide to do it.
3. I shift into gear — I reach for the pencil… or I start peeling vegetables for cooking.
4. Suddenly, something stops me — I drop the pencil, or a potato slips out of my hand and skitters across the floor.
5. A sudden wave of violent emotion sweeps through me, like a wildfire through dry California underbrush. My eyesight dims briefly, as my heart pounds and adrenaline floods through my veins. I want to strike out, lash out, hurt whatever is getting in my way. I curse the pencil… or I feel a sharp stab of rage directed at the potato. If I were able to kinesthetically direct energy at will — and if my temper had its way — the pencil or the potato would be a smoking little pile of ashes.
6. In the back of my head, the calm, collected voice reminds me that it’s just a pencil or a potato, and that no one was harmed by this thing slipping out of my hand. I don’t need to strike out and harm anyone, just because I lost my grip.
7. The part of me that doesn’t care for these temper flares is mortified at my intense reaction. It’s deeply ashamed that I would get so worked up over such a little thing. So what, if the pencil or the potato got away from me? What’s the big deal? The wild animal part of me that flared intensely is cowed and tries to defend its reaction, but when the logical, sensible, even-keeled part of me prevails in its reason, that little animal part of me slinks away to a corner to lick its wounds and chastise itself for being bad… again.
8. In an attempt to de-escalate my just-add-water instantaneous rage, I pause and take a measured breath. I turn my focus back to the basics — the simple act of picking up the pencil… retrieving the potato from the other side of the kitchen. I focus on the most basic aspects of the moment, waiting till the rage subsides and I can get back to doing what I started out doing.
9. If all goes well, I can continue with my task and not suffer too much at the hands of my self-recrimination. If things aren’t going well, like if I’m stressed or fatigued or scattered, I may throw something or curse or hit something or lash out… with the consequence of not achieving what I intended to achieve, and descending into a downward spiral of shame and blame and guilt and embarrassment. If I’m lucky, no one is around to see this. If I’m out of luck, someone I love and care for is nearby and is strongly impacted — and quite negatively so — by my sudden rage.

Now, I’ve noticed that if I have built up a lot of momentum around Step 2, my rage response is much more intense, than if I proceed with measured pace, taking things one at a time. I also need to be careful not to indulge every reaction that comes to mind.

It’s helpful if I can sit back and just observe myself, not participate 100% in the whole unfolding drama. But observation doesn’t always work. Especially if I’m tired.

Over the coming weeks (early 2009), I’ll be writing more on this. It may be helpful to others who are dealing with the challenges of TBI temper flares… with greater or lesser success. In fact, some folks have said that what I’ve written so far, is very helpful to them, so it’s my hope that I can help more.

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Back from the holidays, back to work

Of course, the holidays are really just beginning, but the holiday travel piece is over.

I will not be traveling over the December holidays… it’s just too much energy, too much exertion, and it completely overwhelms me far past the level that I’m comfortable with.

Once upon a time, it was fine and dandy for me to constantly push the envelope… travel throughout November and December… push myself to do-do-do for the holidays, doing all the shopping, all the driving, all the travel, all the social maneuvering… just putting my head down and soldiering through, regardless of the toll it took on me.

No more. This year, I am seriously taking care of myself. I did my family duty for Thanksgiving, and it really tested me in some scary ways. Ways that I don’t care to repeat in another month or so. I was able to get periodic naps in, and (for the most part) I was able to watch what I was eating and doing and saying and thinking, so that I didn’t get too far out ahead of myself. But the few times where I did lose track of what I was doing, how much I was sleeping, what I was eating… I melted down in some sad and sometimes scary ways.

One of the times, I was visiting an old friend who had company drop in to visit for a little while, and the shift to lots of social interaction really threw me off and triggered a major meltdown after they left. I had anticipated — and desperately needed — a quiet evening with this person, just catching up about what’s been going on in my life for last couple of years, but I was unexpectedly thrust into the midst of a lot of very happy, very gregarious people who had no idea how loud they were, and had no comprehension of what the effect of their noise was on my sleep-deprived head. I held it together for the hour or so they were there — I didn’t feel I had the right to chase them away, and I didn’t want to spoil their fun, just because I was having auditory processing issues. But when they left, I just fell apart — tried to hold it together and have a pleasant conversation, but ended up in tears.

Feeling damaged. Feeling deficient. Feeling unfit to be around people. Because I just couldn’t follow what they were saying, I was so tired, so overwhelmed, so unprepared. I hate it when I get like that — it ruins the simplest of times, the happiest of times, and I have a hell of a time dealing with the fact that I’m affected this way.

Fortunately, this friend of mine has seen a wide range of human behavior in the world, and they’re not easily intimidated — especially by me, who they know better than I know myself, in some ways. They have an uncanny ability to discern who is really inside the person they’re interacting with, and when I broke down in mortifying uncontrollable tears and couldn’t talk for half an hour, they let me be, rubbed my back, brought me a glass of water and a blanket to wrap around me, and just let me be, till I got my bearings and could be human again.

The other time I started to lose it, was when I was behind the wheel of my car, which was not good. It was raining and dark, and I was having a hell of a time seeing my way through the night. On top of it, I made some poor choices about how to avoid the parking-lot traffic on the freeway, and I ended up taking long back roads that didn’t have a whole lot of human presence nearby. A little scary… not terribly frightening, but what might have happened is haunting me a little today.

I was okay company in the car, until near the end of the trip, when my traveling companion started to talk to me, and I started to flip out — yelling and saying unkind things and generally being a really difficult person to deal with. It was a really shitty way to end up what was otherwise a mostly okay Thanksgiving, and I really regret having said the things I did. It’s like these words were coming out of my mouth, and I couldn’t stop them. I think the talking got to me — the auditory processing stuff, again.

Thankfully, as I drove through the night being a total asshole, I was able to dimly perceive that I was in no condition to be indulging the rage that was coming up in me… that I was operating on diminished resources, to begin with, and I needed to just shut the hell up, which I did.

The last half hour of the trip was no friggin’ fun, and my outburst(s) made a taxing time even more troubling. But at least I was able to shut up, eventually. And my traveling companion may yet forgive me for saying what I said before I dropped them at their place.

Just one more thing I need to make amends for. Thankfully — and I mean thankfully!!! — I am NOT traveling any more for the next six months, at least, I will not be dealing with family up close and personal for at least another 6-9 months, and I will have plenty of opportunities to clean up my act with regard to the person I roasted the other night.

Plus, I’ll be getting my neuropsych results back in the next month, so I’ll be able to explain myself better… and take steps to:

A) Fix what can be fixed

B) Compensate for what can’t be turned around

C) Avoid like the plague those things that cannot at all be helped

If nothing else, there’s always tomorrow, always another lesson to learn, always another chance to make good on the promise I have, as well as more chances to make up for the parts of me that are not cooperating the way I and/or others want/need them to behave.

Onward and upward…

Thanksgiving anniversary #2 — 2004

I’ve been thinking a lot about the Thanksgiving holiday, lately. It stands to reason, since I really got in touch with the impact that my TBIs have had on me, last year around this time. You wouldn’t think that a history of at least six head traumas (most of which knocked me silly and one of which knocked me out), and a lifetime of cognitive-behavioral issues, a spotty employment history, and a see-saw of a personal financial history would escape detection, but I never put it all together and realized that my car accidents, concussions, falls, and blows to my head could have had a cumulative effect, till last year, this time.

But if you consider that head injury has a way of disguising itself (like alcoholism is a disease that tells you there’s nothing wrong), it’s not entirely unlikely. My cluelessness can be explained.

It wasn’t until I saw the long laundry list of tbi-related cognitive/behavioral/physical issues in one place, and made a realistic and honest assessment of my life history, that I realized there was something really, really wrong. I’ve never received medical treatment for my issues. I never had them even identified — till this past year — as something other than “sinfulness” or “character defects”. It never occurred to me that they might be physiological/neurological in nature. It never occurred to me that I might not be BAD… I have just been INJURED.

Anyway, I’m going to quit feeling like a complete and total idiot, and get on with talking about my fall down the stairs in 2004… the most recent time my life was changed by a head injury…

A day (or 2) after Thanksgiving, 2004, I was getting ready to leave my parents’ house after the holiday. I was standing at the top of the stairs at my parents’ house (very steep staircase, about 20 stairs or so), packing bags and carrying them to the car to head home

I was going to walk down the stairs, when someone called to me from the bedroom. I was standing at the top of the stairs, no bags in hand, my head all over the place with thinking about making the trip back.

I turned to listen to what they were saying and see what they wanted me to do, and my feet just went out from under me. I was in stocking feet, which wasn’t the smartest thing, since the carpeted stairs have always been slippery, and the 20 stairs or so are very steep.

It was so surreal… My feet just went out from under me, and I landed on my back and I felt the back of my head hit hard on the top 3-4 stairs, as I went down. My head just bounced off the top stairs, and it took a few impacts before I realized I was even down, and that I was headed for the ground floor. It all happened so quickly — a split second, it seemed like. I’ve always had fast reflexes, so I had the presence of mind to lift my head up as I tried to stop myself by putting my hands and feet along the walls. But I was moving too fast, and I couldnt’ get a grip. I couldn’t stop my fall, and I ended up sliding down the whole flight.

When I got to the bottom, I was dazed and drew a blank. What had just happened to me? Why was I at the bottom of the stairs? I may have actually been “out” briefly — maybe a few seconds. I don’t recall exactly. I do recall there being a bit of a gap in my thinking at that time — things may not have gone completely black, but they did get very faint and dim. I didn’t immediately know where I was or what had happened to me. I remembered going down… falling… sliding… but I still didn’t know why I was at the bottom of the stairs.

I wasn’t sure if I could move, and someone called to me, as though from a distance. They sounded worried… harried… concerned…

I answered faintly, then I got up and went into the dining room before anyone could come to check on me — I just didn’t want to worry anyone. I also didn’t want anyone pulling on me, while I was trying to get my head together. This has always been my way — to shake off others around me, while I collected myself. To refuse assistance, while I got on my feet. Some people have called it “pride”, but I literally cannot think when someone is all over me, talking to me, interacting with me… and I need to keep my head clear, if I’m going to ensure I’m okay.

I got up and went into the dining room to check myself out. I just sat, dazed, at the dining room table, for a few minutes, catching my breath and trying to get my head clear. Gradually, I realized that my back was hurt. I didn’t really think anything of hitting my head.

Someone came downstairs to check me out, and asked if I’d hit my head. For some reason, I said “No” – I’m not sure if I even realized it at that time, I was really dazed — but I do remember that I didn’t want to worry them, and I didn’t want to have to concern myself with that, because I didn’t trust the nearby hospitals. I was also concerned that the hospital would take actions that I couldn’t defend myself against, because I couldn’t communicate effectively. The last thing I wanted, was to be checked into a hospital I didn’t trust, in an area where I was uncomfortable… and miss work. I just couldn’t take a chance on bad healthcare.

I remember that I was more worried about my back being torn up – it really hurt. It had a big brush burn on it, and I focused on getting that taken care of. I had someone put some cream on it and cover the really raw parts with a bandage.

I recall being somewhat out of it, for the trip home, but I made it back okay. I don’t remember much from the days following, as that was a very busy time of year at work, and there was a lot going on. We were at year-end, and a mammoth project I was working on for the last year, was being launched. Tensions were high, and we all had to be 100% “on” — the last thing I could accommodate at that point, was a head injury. Or any kind of injury at all.

I think that urgency, that determination to not be “substandard” may have driven me in ways that kept me from healing. I didn’t get the kind of rest I needed. I didn’t take care of myself. I ate the wrong foods. I really pushed myself and took on too much. I think this is what happens with head injuries — at the time when we need more help and rest and care than usual, our injured heads tell us the exact opposite: that we don’t need as much rest, that we’re fine, just fine, and that we can do more than we realistically can. And because our injury is hidden, and others tend to hate to think we might be cognitively impaired, our drive is not only accepted, but sometimes rewarded by the very people who are also harmed by our injuries.

After that accident, I started having more trouble at work, relationships fraying and straining, not being able to keep up with my work, constantly feeling like I was falling behind, saying inappropriate (and insubordinate) things  in meetings, and becoming openly hostile and verbally aggressive towards others I worked with.  I just was not myself… people became afraid of me and started avoiding me and started pushing me away, marginalizing (or just outright ignoring me) in meetings and openly playing favorites towards others who were competing with me.

I went from being one of the top go-to people in my line of work, to persona non grata and being told I had to leave the group by July of 2005 (8 months after the fall). I’m surprised I lasted that long, but I think my past “stores” of goodwill that I’d built up over nearly 9 years of dedicated, quality service, spared me immediate repercussions.

When I was told I had to leave the group, highly-placed vice presidents offered to help me find a better position. There were people in positions of power who offered to help me, but my thinking was so fuzzy and my behavior was so erratic, that I couldn’t accept their help. I couldn’t understand the consequences of my problematic actions and behavior, and I decided to just take matters into my own hands — another bad idea, compliments of my head injury. I converted from a full-time employee to a contract technical writer at about 60% of my former pay. And four months later, I left the company permanently.

Thinking back, I can’t say that I miss the high pressure and stress, but if I’d had a clue about what was going on, and if I’d been able to manage myself and my situation better, I might not have had to part with hundreds of thousands of dollars in stock options and nearly a decade of quality recommendations and high-performance job history.

It ended on a very sour note… and it wasn’t until this past year that I realized — fully — that it wasn’t necessarily that “awful” company that was to blame for my crash-and-burn. It was my head injury.

So, this Thanksgiving is quite bittersweet for me — bitter because I now realize just how much I have lost over the course of my life, thanks to my injured brain and the ignorance of people around me and my inability to get the help I needed.

And it’s sweet, because I have a lot of love in my life, I have people around me who accept and support me and realize that I need help with my issues, not judgment for my shortcomings… I have my health, I have my sanity, I have access to a lot of quality information, and even though things are sort of dicey, right now, with my job and money, I have the determination and the stubbornness to hang in there till i figure it all out. I also have professionals who can point me in the right direction — whether in person or online — and even though I do have to overcome a lot of deficits just to function at a ‘normal’ level, I can still do a pretty good impression of a regular person… and buy myself time to figure things out for myself.

I never knew, until a year ago, just how much my head injuries had cost me over the course of more than 40 years. Now I know… now I have information… and I can now get help.

And so I shall.

I don’t give up. I just don’t. And for that persistent quality, that stubbornness, that inborn tenacity that refused to take “no” for an answer… that inner wanderer who wrestles with angels and refuses to let go until i am blessed… for all that, I give thanks.

A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.

Temper, temper…

I’ve been checking my stats and seeing what search terms people are using to find this blog. “Temper” is a popular one. TBI and temper issues often go hand-in-hand… and for me, it’s been one of the biggest hurdles. I’ve lost jobs and burned bridges over temper outbursts. I’ve gotten into hot water all my life, because of my temper — starting with my parents, who really came down on me very hard for ‘not being able to control myself’.

If they had known that my falls and getting knocked out by that rock didn’t help matters, they might have been nicer to me. But they weren’t. And I was convinced all my life — till a year ago, when I realized that my multiple tbi’s had affected my cognition and behavior — that I was a BAD PERSON who wasn’t entirely fit to be around nice people.

You know what? I wasn’t BAD. I was INJURED.

That doesn’t excuse my behavior, of course, but it explains it. And knowing now that aggression, hostility, rage, temper outbursts, emotional volatility, and impulse control often go hand-in-hand with brain injury — be it mild or moderate or severe — helps me manage myself in ways that keep me and others safe from my outbursts.

So, what do I do about my temper (which has caused me to break many things, lash out, even physically assault people, to the point where I once had a restraining order against me)?

First, I remember that my tbi’s have affected my reasoning and the way my brain reacts to the world around me. I remember that there are mechanisms deep in my brain that react on a very primal level to perceived threats. There’s the amygdala, which is the fight-or-flight switch that seems to work in overdrive with me. And there’s the limbic system, which is about emotion. And then there’s the parts of the brain that control impulse, which are around the area where I got hit in the head (and knocked out briefly) with a rock, when I was eight. People used to believe that when kids’ brains were injured, they recovered better than adults, but now they’ve realized that if you injure a young brain, it affects how it develops for the rest of the child’s life.

So, I try to stay objective, and remember that my brain doesn’t work the way I really want it to.

Next, I try to stimulate my parasympathetic nervous system — the counterpart to the sympathetic nervous system — to chill everything out. The sympathetic nervous system, as I understand it, is the source of the fight-or-flight response that’s making me react so intensely and act out. So, to calm my system down, I need to trigger the parasympathetic system. I’ve been taught that deep breathing causes the lungs to expand, and when they press against the inside of the ribcage, it stimulates the parasympathetic system, so I try to breathe deeply and feel my lungs filling with air and pressing against my rib cage. Also, counting my breaths gets my mind off the turbulence and forces me to focus on something other than what’s pushing me over the edge.

I also rub my neck near the jugular vein — there’s a nerve in there called the vagus nerve that triggers the parasympathetic nervous system. It’s a huge nerve that runs through our whole body — look it up online for more info, as there’s more to it than I can come up with at this point — and one of the treatments for epilepsy to keep people chilled out and reduce danger of seizures, is actually to surgically implant a vagus nerve stimulator in their body. I’m not keen on the idea of having something implanted in me. I’d rather just massage my neck on the right side — but gently, as I’ve heard stories from doctors and nurses about people knocking themselves out by massaging it too hard.

Bottom line: I actively try to stimulate the part of my nervous system that’s built to chill me out. We all have it. We can all use it. And I do.

If this doesn’t work, I try to get my mind off things by doing something. I take a walk. Or I work in my workshop. Or I write something. Or I draw something. It doesn’t have to be perfect, but it needs to be active, and I need to really concentrate while I’m doing it, so I redirect that wild, primal energy/rage/agitation into something productive. Sometimes, I’ll clean my study, which gets to be a total wreck, at times.

I try to get my mind off things that were making me crazy, and do something  positive with my energy.

If all else fails, I remove myself from the situation, if I can, and take a breather. I physically exit the area, and I pull myself together. If I cannot stop the rush of temper with people I do NOT want to hurt (and I really don’t want to hurt anyone), I just walk away and gather myself. I give myself a talking-to. I don’t drive when I’m in that kind of a space, but if I can go into another room and close the door and have some quiet time in a darkened room, I do. I try to stop the cascade before I do/say things I cannot undo or take back.

I try to protect the ones I care about by removing my malfunctioning brain from their presence.

Most of all, I try to not judge myself and be too hard on myself. I’m a long-term multiple mild traumatic brain injury survivor, and the fact that I’m still here means I’ve done something right. I try to learn from my experiences and keep an eye out for things that may cause problems later. I make amends, whenever I can and should. And I do what I can to atone for the things I’ve done that hurt others — without my intending to or wanting to.

I have to remember that I am a good person, but my brain does not work as well as I want it to, and if I had total choice in the matter, I would definitely not do the things that my brain is prompting me to. This is not an excuse for bad behavior. It’s a warning to myself of what I have to pay even more attention to, so I can live the best life possible and, wherever and whenever possible, do no harm to others, but help in any way I can.

Not all of these approaches work 100% all of the time. And I don’t always have the presence of mind to do them when I should. But these things have worked for me and my extreme and volatile temper.

They might work for you, too.

Good luck!