Bringing light

Light is where you find it – find more art like this at http://www.atagar.com/bobsGallery/

I’ve been thinking a lot about this holiday season – and all the ways that it’s associated with light. Most of the “big” traditions I know about feature light of some kind, and no wonder — this time of year is when the days become longer, and we literally can celebrate the return of the light. It’s a physiological thing, as well as a psychological and spiritual thing. And it’s well worth celebrating.

I celebrated yesterday by walking deeper in the woods than I have in a long time. Once upon a time, when I first moved to this place, I was out in the woods for most of my waking hours every weekend, rain or shine, good weather or bad. I guess I’ve always been drawn to the forest — it was the one place I felt at home when I was a kid, and there’s something really calming about being in the woods. When I was younger, I wanted to be a forest ranger, until my guidance counselor talked me out of it because it wasn’t “practical”.

Hm.

Anyway, now I get to be my own forest ranger, and I don’t have to worry about government funding cutting me off from my livelihood, so it’s not all bad, the way it turned out. And yesterday I got a good reminder of the things that matter most to me in my life — clean air, fresh water, room to roam, and friendly, like-minded people also sharing the paths.

And I couldn’t help but think about how — for years after my concussion/TBI in 2004 — I couldn’t go into the woods. I just couldn’t. There was too much stimuli there for me. It was either too bright or too dark, or it was too quiet or it was too loud. I got tired so quickly, and when I did, I got confused and anxious. And the idea of interacting with anyone I came across on the paths, was out of the question. I panicked anytime I had to interact with someone who was out for a nice quiet hike like myself. I also got turned around and lost very easily, and since I have never had the best sense of direction to begin with, I would spend hours just trying to find my way back to where I wanted to go. I told myself I was “exploring” but the fact was, I was getting lost and had to keep walking to find my way back.

And half the time, I couldn’t remember where I’d come from. Even reading maps was impossible for me. Especially reading maps.

So, I quit going into the woods. I gave up my forest. And things were very dark and dreary for a number of years. The crazy part was, I told myself it was by choice, not something I was stuck doing, because I was so trapped in anxiety and sensory overwhelm.

What changed it? I think just living my life. Working with my neuropsychologist to just talk through my daily experience. Also, doing my breathing exercises — and exercising, period. And practicing, practicing, practicing some more at the things I wanted to do, until I could do them pretty close to how I wanted to. And learning to not be so hard on myself for being different now than I was before.

I also really paid attention to the times when I saw signs of more functionality — like when I started going on hikes again, after years away from them. Like when I was able to read an entire book, after years of only being able to read short papers — and not understand much of them at all. Like when I gave things my best shot, and found them turning out pretty darned close to how I intended — sometimes even better.

Taking the edge off my anxiety, giving myself a break, focusing on things that were bigger and more significant than my own petty concerns… those helped. Those brought light to my life.

And it continues to get better.

When I think back on how I was, just five years ago, it amazes me. I was so trapped in a dark place, confused and not knowing what was wrong with me. I didn’t understand what was holding me back, I didn’t understand what was stopping me from just living my life. I didn’t understand how confused I was or what I was confused about. I couldn’t discern the different issues I had, because it was all just a dark blob of problems that pulsed like a nebula of hurt and pain and confusion. When I think about how things are now — with so much light and so much more possibility… it amazes me.

There are answers out there, if we look… if we know to ask. There are solutions out there, if we take the time to be clear about what the issues truly are. There is hope out there, when we are willing to take a chance, have some courage, and move on — move on.

As the days lengthen and we roll towards the spring (I know, winter is just now beginning, officially)… as we take this holiday season to step away from the everyday grind and do something different with ourselves… as we try to imagine what else is out there for us… let’s all remember that as dark as it gets sometimes, the night does pass. There is always dawn and a new day, just around the corner.

Yes, let there be light.

Brain-lock in the “all-clear” position

I have to just quickly post about this, because it’s so applicable to my situation, and it’s so current.

In the Give Back Orlando material, Dr. Schutz talks about how one of the hallmarks of TBI is that the brain gets “jammed in the all-clear position,” and it doesn’t realize that things are amiss, when they really are. An injured brain can keep telling you that all is well, all is swell, when it’s actually not, and you’re screwing up, left and right. As everyone around you is getting pissed off and running out of patience, all the while, your brain is telling you that you’re doing a great job(!) and everything is perfectly fine.

But it’s not.

This is one of the most important features of my life that I have to deal with. It has dogged me ever since I was a kid — never knowing just how well or poorly I was doing (at just about anything) — thinking I was either doing really, really great, or I was doing really, really poorly — and then having the surprise that it was completely different from what I thought.

When I was a kid, it happened to me with social situations, family situations, school situations. I can’t tell you how many times I thought I’d aced a test — I just felt so incredibly good about how well I’d done — only to find that I pulled a B or a C. Now, B’s and C’s aren’t the end of the world. But when you think — and are 100%, totally, utterly convinced — that you got an A+, well, it’s a real shock, and it makes you question everything about what your brain is telling you. I got in the habit of taking lucky guesses, and bracing for the impact of being wrong. Again.

I tell people how it was for me when I was growing up and going to school, and they just don’t believe it. They don’t believe that I never really knew how I did on tests. They just can’t fathom it. Or won’t. I seem so confident, so sure of myself, so competent. Well, yah — on the surface. I know how to do that. The world requires a certain level of bravado and boldness to get by. And people around you respond really well when you come across as self-assured and confident.

But on the inside, it is a totally different story. It’s all a swirling mass of insecurity and confusion and not-knowing that makes me nuts when I haven’t gotten enough rest. I get turned around, if I think through some things systematically, so I don’t think. I just do. And do some more. I have to keep moving forward. So, I just take a guess. And I often get lucky. Or, if I don’t, then I just change directions quickly and try something else. My life is a constant exercise in moving forward… backwards… side to side… but moving. Like a shark. I get into trouble, if I stop moving. I start to sink.

Not that people around me want to hear about it. For some reason, they just cannot / will not believe me, when I tell them that a lot of what I come up with is just pulled out of thin air.  And they don’t want to hear it, when I say I haven’t understood what people have said to me at work all week. They just can’t hear it. I think it terrifies them, the prospect of living in a world where you don’t understand very much of what people are saying to you – like moving to a different country where they speak a language you’ve never heard before. If I were deaf, at least then people could cut me some slack and understand that I have a different way of communicating. But I’m not deaf. There’s nothing wrong with my hearing. There’s just something screwed up about my comprehension.

To some people, it might sound scary and awful. But that’s just how it is. And I have to look at it. It happens to me in adulthood, not unlike my childhood. I get turned around. I can’t understand what people are saying. I get lost and off track.  I try talking to people who know about my TBI history, but they don’t want to hear about me having big problems. I’ve been having big communication problems at work for the past six weeks — and some of the problems are persisting, no matter how I try to overcome them. I need to discuss this with my friends/family, but they keep trying to reassure me that all is well, and I “can do it”.

I know I can do it. Eventually, I’ll get it together. But right now, I’m really struggling, and it can be dangerous for me to go around saying “I’m fine!” when I’m really not. Much as I want to be a success and not fail, if I persist in pretending all is well, I run the real risk of losing this job. I can’t do that. I can’t keep pretending, even if for the sake of looking like a success and putting others’ fears to rest.

I need to take care of myself by taking an objective look at what is going on with me, so I can do something about it. I didn’t get this far in life by hiding from my difficulties. They’ve been very well hidden from me, by my happy-tbi-head, but since I’ve found the tools over the past many months, to identify my issues and deal with them, they’ve been easier and easier to spot. And deal with.

And I need to deal with them. I would love to tell everyone around me that I’m settling into my new job really well and it’s going along swimmingly. But it’s not true. My happy all-clear brain doesn’t pay any attention to the trouble I’m getting into, and it tells me I’m doing great! But I’m having real problems keeping track of things and keeping on schedule with important deliverables. The things I’m working on affect hundreds and hundreds of my co-workers, and their products affect literally millions of customers, so I had better get my act together and get back on schedule!

Failure is not an option.

I must manage my difficulties and develop workable strategies.

And I can’t waste time feeling bad about it or avoiding it or listening to my happy-all-clear brain spouting its cheery crap. And I certainly can’t let others’ fears keep me from making positive change in my life.

I have a life to live and a history of head injuries to deal with.

Time to get real.

Again.

I was afraid this would happen…

I am tired. I am so tired, in fact, that I cannot rest. It’s not good. I haven’t had 8 uninterrupted hours of sleep in I don’t know how long. I haven’t had seven hours at a time in a while, either. Right now, I’m averaging about 6 to 6-1/2 hours of sleep a night, which is not good.

I’ve been going on adrenaline for a week, now, but it’s taking a toll. I spent the long weekend — all three beautiful days of it — laid up in the house, fighting off an infection that really dragged me down. What a waste. Then again, I did need to rest, so it was probably my body’s way of getting me off my feet.

Things have been going pretty well at work. It’s a mixed bag. On the one hand, I’m pretty freaked out at how much I have to learn. A lot of this is new to me — the aspects of this advanced technology I have to master are specific to the company I’m at, so I have to learn it even more specifically. And there’s a lot going on, so I have to learn a wide range of of specifics. Part of me is petrified. I really want to do my best at this job, and I will. But what if my best is not enough? What if I’m not nearly as proficient as I think I am?

It’s happened before. Lots of times. My brain has told the rest of me that it “got it” just fine, when it was way out in left field. It’s been a recurring problem.

Another issue is that I’m not following what people are saying to me. I’ll be sitting with someone, going over issues with them, and all of a sudden, I’ll notice that I am not understanding a word they’re saying to me. Somewhere, back a few minutes before (and I can’t remember when), I stopped listening. My brain quit on me. It just dropped out and ceased to function. Bye-bye. This is not good. I need to be able to pay attention when I’m talking to people. I need to be able to listen to them the whole way through. And I need to remember what they said to me later on.

This has me very concerned. Very worried. Very uptight. I’m getting that sick, sinking feeling in my stomach around my inadequacies and shortcomings. And I’m starting to get really worried that this is going to impact my ability to do my job — and my reputation. It feels like people I’m working with are noticing that I’m spacing out… that I’m getting lost. And my interactions with them are faltering, especially later in the day.

The people who brought me on board took a bit of a gamble with me, when they hired me. They brought me on based on what they knew of me in the late 1990′s. It’s now almost 10 years later, and I’m trading on a ten-year-old reputation. I can’t let these people down. I can’t let these people down. I can’t embarrass myself. I just can’t.

What to do…

Ah-ha! I’ve got it! I’m brilliant! I have a solution! It’s so common-sense, it’s almost frightening — use “assistive technoloy” I have (literally) at my fingertips, every day: My laptop.

My laptop is my lifeline at work. It plugs me into the network, it connects me with people near and far, so I can do my job. It’s my soother — the rhythmic action of typing really chills me out. And it also paces me, makes me do things systematically. And it’s a great prop for me to hold onto, whenever I’m getting tweaked and nervous and agitated.

I’m going to take my laptop with me, whenever I go out and consult with people who need my assistance, and I’ll use it to record what’s going on in our conversation. I’ll take my laptop with me to meetings, and I’ll have it logged into the network to check on various pieces of information that come up. I’ll always have it with me, and I’ll make a point of “capturing information” at the time I’m meeting with people, whether it’s one-on-one, or in a meeting. This is brilliant on a number of levels.

First, it makes me look like I mean business. I do mean business, but having my laptop with me bumps up my appearance by several orders. It makes me look like I take the situation seriously, by getting a computer involved. It’s true — I do take the situation(s) very seriously, and this communiates that to others.

Second, it slows down the action. Typing takes time to do. The computer has to run its programs, which tend to slow things down. Reviewing my notes in the moment also takes time. It basically keeps the action from getting way out of hand, and when it does, it gives me a great reason to circle back and recap. I’ve noticed that when I’m talking to people, I’ve been losing information, which is not good — and they’re smart, so they see it. Now, if I can type while I’m talking, I can find some middle way to keep up and get others to slow down. So many people I work with are very verbal, very interactive, and when we start writing things up, they have to slow down.

In a way, we’re inversely speedy — They’re as fast when they’re talking, as I am fast when I’m typing. They’re as slow when I’m typing, as I am when they’re talking. So, if I can type things up, I force them to slow down, which has to start happening.

Third, it speeds up my interaction. For some reason, when I’m typing things up and “thinking on paper or on-screen” I’m better able to collect my thoughts and communicate. I see issues and come up with ideas that are buried in the information. Writing things up and typing them out helps my brain organize the ideas that just get jumbled around when I’m talking and listening to people talk. I can really fly. And I type very fast, which makes me look good. I look even faster than I am, because I’m typing as I talk — highlighting my skills and abilities, rather than getting bogged down in my limitations.

Fourth, it creates a record for me to refer to. I can not only keep up while I’m meeting with someone, but it captures what we discuss, so I can come back to it later. This is huge with me. I lose so much, when I’m talking to people, and what I do retain, tends to get “filed” in different places in my brain.

The inside of my head feels a bit like my home office looks — papers and books all over the place, artwork and supplies and various items left here and there, in no particular order. Some of the mess is hygienic — just plain laziness keeping me from putting things in order. But some of it is necessary — one of my vexations is “out of sight, out of mind” where I literally lose things I cannot see. I forget that they exist, and then they get lost for long times, when I really need to keep them in mind. Like one of my W2′s that went missing in the past month. I distinctly remember getting it in the mail and putting it with my tax forms. But now it’s gone. And I have to file for an extension and request another copy. I searched high and low for it, but it’s nowhere to be seen, and I may have accidentally thrown it away. There’s a very good chance I did just that.

To avoid completely screwing up my new job and pissing everyone off and wrecking my future chances at employment, I’m going to just write everything up for myself — and others, so I have it to refer to. Just because my working memory is for sh*t, doesn’t mean my career needs to be trashed

Fifth, it chills me out with the typing. Something about the rhythmic tap-tap-tap soothes me and quiets my nerves. It’s an outlet for my nervous energy, I suppose. And I’m notorious “tapper”, anyway. For some reason, I tend to tap away at things, when I’m nervous. So, typing gives me a way to get that out of my system in a productive and positive way.

Sixth, it helps me think better. I do so much better in writing, than in speaking, so why not make that work for me? Writing things down lets me process information more quickly. And my typing is way faster than my handwriting — and it’s easier to read — so what I come up with is shareable. I can seriously come up with some great solutions when I’m working on-screen. I don’t know what I did before I had computers to help me out. Actually, I do know what I did — I floundered and foundered and made a mess of things. I made plenty of notes that were no use to anyone, including myself. Something about the keyboard helps me think more clearly. That’s a good thing.

So, I don’t need to get all tweaked and freaked out over the difficulties I’ve been having with listening to people. I work in technology, with computers. I use a laptop at work. I can use that laptop over and above its customary use by others. And I can make it work for me in lots of new ways.

This is good. This is so very good. Not only is it a workable, pragmatic solution, but it takes the pressure off my worried brain that has been sweating big-time over these difficulties. One less thing to worry about. Lots less things to worry about.

Now, I just need to take care of my wrists.

And make sure I start getting to bed sooner each night. That part is critical.

How to have a working vacation

Work doesn’t have to be a chore. It can actually be fun. Over the past nine months, I was essentially on a “working vacation” — doing a job that paid pretty well and was really easy for me to do, and that had constant opportunities to learn.

In these times of economic hardship and unemployment, it may seem like productive, enjoyable work is well out of reach. It’s not. Here’s how you can work a job that’s more like a vacation than a J-O-B:

  1. Get training in specific skills. Learn a trade. Take classes. Acquire and develop your ability to do something, whether that something is fixing clothes dryers or building web pages or operating tool and die machinery. If your industry is becoming increasingly automated, learn to use the machines that are “taking your place”. Trust me — they’re going to break, and it will take trained people to get them back online.
  2. Hone your skills to the point where they come second-nature. Some people think that having skills or qualifications is enough… that simply having a degree or a certificate is enough to secure their future. I’m not sure what the weather is like on their planet(s), but that’s not been my experience. It’s not just having skills that counts — it’s being able to use them. So, if you have some, work, work, and work some more to attain mastery in your chosen field. Do not rest on your laurels. Make it your mission, your vocation, your calling, to be the best you can be at what you do.
  3. Keep learning, keep growing. That, in itself, is a reward. It makes you feel good. It makes you earn well. It makes you an asset to your employer and your co-workers. The more you learn and the more adept you become, the less your work feels like… work. When you reach a place of mastery in your profession, your calling, your vocation, work becomes worship, and the level of effort decreases dramatically.
  4. Take on more than you think you can handle. This will stretch you and force you to push the limits of your abilities. Really stretch yourself. Push yourself. Do things you don’t think you can, and don’t be afraid to fail. Then, when “regular” jobs come along, they will feel like a breeze. “Average” work will feel like child’s play, compared to the more advanced stuff you’ve done.
  5. Do the dirty work. What a lot of people don’t realize is that it’s not the fun jobs that win you job security, it’s the shitty, crappy, awful, boring, distasteful jobs that nobody else wants to do. When a crappy job comes up, if you have attained a level of mastery in your work, dealing with the stupid, niggling little details will not be such a chore. You’ll be more than up to the task, and your job will be much more secure than people’s who are prima donas, who think that because they have such-and-such qualifications and certifications and degrees, they shouldn’t have to do the “scut work”. Scut work is the stuff of job security, dude. Never turn it down. The people at the top are always looking for folks who can handle the shitty jobs well — and with mastery.

Basically, having a “working vacation” has two parts — ability and attitude.

Optimized, maximized, top-flight ability lets you do difficult things easily and with style.

A positive can-do attitude lets you treat every assignment like the opportunity it is.

Work should not  be a chore, a task to perform at the risk of homelessness. We have to work, we all know that. (And the ones who say otherwise are being silly — or revealing their independent wealth).  But it doesn’t have to be a burden, if you take the right approach.

Mastery, not servitude, is the key. So, take charge of your life, take control of the things you can control — your attitude and your abilities. And don’t let anyone hold you back or tell you anything other than You can do it.

Because you can.

So, what’s “normal” after TBI?

I’ve been giving some thought to M’s comments about what folks might want to know about TBI, and I figured I would start with the “normal” question.

It’s truly hard to say, what is and is not “normal”…  but my experience was that I was doing and saying a lot of cranky, precipitous things that pissed people off and alienated them and gave them the wrong impression of what was going on inside my head… all the while without having a clue that the problem was with me.

As I understand it, when the brain is injured, it starts to mis-fire. The connections that were there before can be severed or frayed, so the usual ways that energy and ideas get from one part of the brain to the next just aren’t there. And the brain has to find another way of doing it.

It’s like when the Loma Prieta earthquake hit the San Francisco area, back in 1989. Someone I once worked with who lived through that said that their drive home from work usually took them 45 minutes — 20 minutes if there was no traffic. But after the earthquake, with all the roads closed and impassable and extra traffic with people panicked, it took them 3-4 hours to get home. And when they got there, they were exhausted… and all their dishes were lying smashed on their kitchen floor.

That’s a bit like it is when you’ve had a TBI. All the usual ways of thoughts getting from point A to point B are mucked up… and there’s this traffic jam of concepts and energy and ideas and impulses that are all glommed up in the process. By the time your brain figures out how to get where it’s going, you’re just plain wiped out. And there’s sometimes a big mess all around you, too.

That being said, “normal” after TBI can be:

  • feeling exhausted
  • feeling dull and dense
  • having a very short fuse and blowing up at a moment’s notice
  • having a headache
  • being dizzy
  • having trouble hearing
  • having trouble seeing
  • having trouble sleeping
  • having trouble waking up
  • being easily distracted
  • having trouble concentrating
  • not being able to understand what people are saying to you
  • not being able to do things you always did as easily as you used to do them
  • becoming confused over “simple” things for no reason that you can tell
  • feeling like everyone is out to get you

All of this is made worse by fatigue. Without question. The brain needs extra rest to recover and rebuilt its pathways, and if you’re tired and your energy is all taken up with trying to keep up with your life, that doesn’t help your head any.

You basically have to just get lots of rest, take it easy, and be very, very patient with yourself.

And get used to redefining “normal”. Forget how things used to be. Get used to how things are now. Let the old stuff go, and come up with a new set of measurements for what’s “normal” in your life.

It’s not very easy, at times, but it is what it is.

Hits madness… the good kind

What a day I’m having… That little post I put together on the train while coming to work has caught people’s attention. My normally sleepy little blog has by now logged 1,646 visitors. Up from a high of 200-some, a few months back.

Suddenly, people are paying attention

Suddenly, people are paying attention

I’m pretty excited about this, and checking where the traffic is coming from, Alphainventions and Condron.us are both feeding me. Alphainventions mores0, but Condron is doing it, too.

It’s a pretty intense jump — a 10-fold increase over what I typically get. Dizzying. It’s kind of depressing, that this happened as a result of me talking about terrible things happening, but I guess in these times, everybody is paying closer attention to terrible things.

I think that perhaps we’re really trying to figure out how to handle it all. It’s not easy, living in these times, and I suppose it’s human nature for people to ponder imponderables. That’s not a bad thing. In fact, it’s a good thing. Writing about terrible things isn’t the most pleasant activity, but if we can come away with some lessons learned, then we may be able to turn negatives into positives.

One can only hope.

I talked to my friend today about their nephew. People think it was a drive-by shooting. Stupid, stupid, stupid. What’s the point?! What does it give us — anyone — to strike out against others from a safe distance?! From the safety of a passing car… What is the point?

I can think of a number of reasons someone would want to do such a thing. I can think of a whole lot. In a small way and on a very limited scale, it certainly has allure. But on a grander scale, within a community context, it has on meaning at all, and it only serves to destroy what little connection we have with our world.

And I think about how this relates to TBI. And PTSD. I can’t help but think about it. I wonder if the people involved were cognitively impaired, in some way. If they were socially impaired. If they had been injured so often and so badly by a wrecked family system and a wrecked culture, that there was no way they could get through it in one piece. If they were so brutalized by the inequities of this culture we tend to adore, that there was no hope left for anything but violence. Shooting. Cowardice from a moving car.

Certainly, whoever did this was alienated from their community, else they wouldn’t have done this. People are by their nature self-preserving. They do most things because they get something out of it. My logic is getting all tangled around, I’m sure, because I’m so pissed off about this shooting — about all the shootings that have been going on. But it seems to me that people who feel they have a place in the world, who have a future ahead of them, who can clearly see how they are interconnected with one another, and who have positive, mutually beneficial relationships with others they care about, are not going to run around shooting other people from moving cars.

But, you may say, people are responsible for their life choices. They have to make wise decisions and act on them, and if they choose the lesser, then they should be caught and punished… possibly put away for a very long time. I’m not saying that isn’t true. I agree with it. Personal choice is critical in all this, and I do believe in finding, catching, and punishing wrong-doers. I hope whoever killed my friend’s nephew is found, tried, and sent away for good.

But if someone is so f’ed up by a long, long history of abuse and neglect, and thanks to many beatings and falls and fistfights, their brains have been altered in ways they’re unaware, so that they’re doing things and making choices whose reason escapes them, and their skills and abilities are eroded by lifetimes of neglect and misunderstanding and seemingly random punishment, what chance do they have of acquiring the ability, even skill, of assessing their behavior and their situation and figuring out how to set right what’s been wrong for so long?

I do think, based on my own experience, that head injury probably plays a much larger role in our society’s ills than we care to admit. Certainly trauma and post-traumatic stress does. We should probably look closer at it as a nation. I suspect we’ll have ample opportunities to do so, as our veterans return from Iraq and Afghanistan, many of them with TBI and PTSD — and not all of them diagnosed and treated or supported in any way. I fear we are headed for social melt-down, even as our economic situation worsens waaaay past where we thought it would bottom out.

This is not to say that I think everyone who’s been hit on the head or suffers from PTSD gets a “pass” when it comes to bad — even evil — behavior. Some sh*t is precisely that — pure evil. The thing is, with brain injury, you don’t always know how evil your behavior is. It’s when you start to approach your injuries and deficits and learn to understand it and you get your broken head around the ideas of what’s right and what’s wrong and what you should and should not do, that you have the chance to examine your choices, become conscious about them, and become capable of taking responsibility for what you’ve done.

But until you can look at your injury and the after-effects, and come to terms with the person you’ve become as a result, you can’t really even start to approach the level of self-examination that’s so important, even vital, to responsible behavior.

My friend’s nephew is dead. It is a goddamned tragedy. Hearts have been broken, and some of them will never heal. This happens every day, all over this country… all over the world. And every time it happens, it is a tragedy. There’s no two ways around the awfulness of it all. But the worst thing of all is, this sh*t keeps happening, and we don’t seem to learn. We can’t seem to figure out how to stem the tide of this wretched self-destructiveness, and we can’t seem to figure out how to make our streets safe. Not just the nice streets in the nice neighborhoods, but all streets. In all neighborhoods.

I’m just one person looking on from something of a distance, but I am holding onto some hope. Maybe it’s easier for me to do it, because I’m not in the middle of my friend’s family’s pain. I’ve been in similar pain… and if nothing else, I cannot lose hold of hope.

I can only pray that maybe someday we’ll figure out ways to approach our social limitations with common sense and compassion, find the courage to reach out to ask for (and offer) much-needed help, and force ourselves to look at social ills not just as opportunities to capture and punish the anti-social dispossessed, but as gateways to greater understanding… Gateways that not only make it possible for us to understand, and sometimes forgive, but which force us to face up to the terrible things we have done… and change our ways.

Maybe I’m being overly optimistic. I’m sure on some level I am. But after all I’ve been through and survived, after having come through so much wretched difficulty in my own life, after having won so much and achieved so much despite my limitations, I’m convinced, there are such things as miracles.

More senseless gun violence

A good friend of mine lost their nephew last week. I don’t know all the details, but I do know he was shot. Apparently at a bar. I’m not sure they know who did it, but even if they did, it won’t bring him back. It all seems so random. I didn’t know the man, and I don’t know if he was in some kind of trouble, himself, but even if he was, being shot over something — anything — hardly seems like it can be justified. By anyone. For any reason. I know there are folks out there who  believe in payback and are hardened to the effects that the most extreme forms of payback have on the “debtors”…  but I’m not one of them.

For every person who “gets what they deserved” — if they “deserved” it at all, which is usually doubtful — there are family members, friends, loved-ones, who are crushed by that aspect of the world we live in. It’s not just about “paying back” the person who did wrong — it’s about devastating the lives and hearts and futures of everyone who was connected with the person who was taken out.

Gun violence seems to be on the rise, given news reports. And it’s happening worldwide. There have been several recent incidents in Germany of people taking out numerous others — a young man killed 15 people on a shooting rampage in southern Germany this past March, a man killed his wife and child around that same time, and just recently, a court shooting in Bavaria left two people dead.

In the States, we’ve seen shootings, too.  In Alabama this past March, a man went on a shooting spree that left ten people dead, many of them children. And just recently, 13 people were shot dead in New York, and a nurse and seven elderly people at a nursing home in North Carolina were gunned down. It’s everywhere. And it happens all year round. Last year during the holidays, shoppers in an L.A. toy store had to duck for cover as a fistfight between two women turned into a pitched gun battle between their men.

Everywhere I look, these days, there seems to be gun violence. Explosive destruction on a small scale that ripples out with baffling waves of shock.

The philosopher in me wants to find some deeper meaning to this. The engineer in me wants to find the root causes and figure out a solution. The mystic in me wants to lift my eyes unto the hills and focus on Eternity. The citizen in me wants to run and hide. The social reformer in me wants both stronger firearms controls, limits on what kinds of weapons are commonly available, mandatory licensing for anyone who buys ammunition, and mandatory training in gun use for all individuals, starting at age seven (or when they’re old enough to fire a gun without getting knocked over, whichever comes first). The friend in me wants to just sit with my friend in total silence for hours on end, just being quiet, just being there for them and whatever they need.

The TBI suvivor in me is glad I don’t have a gun. I have specifically chosen not to own a firearm, not to use firearms, not to go down to the firing range to blow off steam, not to go out hunting with my dad and brother and uncles. Now, I was raised in a family of hunters, and I was taught to shoot from when I was about seven or eight years old. My dad took me out to the stubble-covered cornfields with his brothers, ’round about the time when hunting season was about to start, and we all practiced our aim on tin cans. I learned to shoot shotguns, 30-aught-sixes, and 22′s.

I went out hunting with my dad a few times, too. Deer hunting, when we went out to a cabin in the woods, got up before dawn, and I sat up in a tree stand, while he circled around to drive the deer my way. We went rabbit hunting, too. But I had a hard time seeing the rabbit, and he had to kill it for me.

Now, ever since I was a little kid, I looked forward to being one of the family hunters. One of the providers for my tribe. One of the ones who went out and did what needed to be done, to make sure my kin were fed. But I had trouble seeing, I had trouble hearing, I had trouble with my coordination. And as hard as I tried, as much as I wanted it, the whole hunting thing never “took” with me.

It wasn’t for lack of trying. I learned to track, I learned to clean a gun. I learned to shoot. I learned proper handling of rifles and shotguns. I learned how to carry a gun while I was walking around other people. And I did it all enthusiatically, from a very young age. Even  before I was able to carry and fire a real gun, I was pretending to do that, dressing up in my dad’s orange hunting vest, making sure the hunting license was clearly visible on the back.

But I think my better angels have protected me from handling guns — even in legitimate sport. I have issues with motor coordination. I have trouble with my sight and hearing at times. I also have trouble with figuring out exactly what is going on, sometimes. And I have — when I’m fatigued and/or stressed — a tendency to “go off” on raging temper flares which I manage with varying degrees of success.

Quite frankly, I make a terrible candidate for gun ownership. And even if every citizen in the United States were allowed to “pack heat”, as I’ve heard it recommended (so that we can all protect ourselves in the moment from a crazy shooter on a rampage), I doubt very much that  I would do it. I would rather duck and run for cover, than take my chances with a gun. I would be far less safe with one, than without one — as would everyone around me. I know my limits. Handling firearms is strictly out of bounds for me.

As is being around other people who carry firearms on a regular basis. When I was younger, I ran with a kind of rough crowd. And some of them carried weapons of numerous types. I’m not sure if there were guns in the midst of us, but I wouldn’t be surprised. There were drug dealers and career criminals in my immediate social circle. At the time I was running around with those hell-raisers (and worse), I was often intoxicated, and when I wasn’t intoxicated, I was definitely impaired from the aftermath of some chemical ingestion. Plus, I had a lot of unresolved TBI injuries to deal with. It wasn’t good.

Frankly, I count my blessings, these days, as I look around me and I see everything going so terribly wrong in so many ways. In my youth, I easily could have ended up like my friend’s nephew — dead after an inexplicable shooting. I could very well have had my life cut short, with my family wondering what went wrong… how they might have helped… and devastated by that inexplicable loss. Any of us could end up in that situation, really. These days, with the violence being so extreme and seemingly so random, it’s hard to know exactly how long any of us is going to make it.

But for now, for today, in this moment, I am alive. I am living, breathing, going to work on the train, and counting my incredible blessings. The world is going to sh*t in so many ways, and yet I’m still here. I’m still standing. I’m still going on with my life, to the best of my  God-given ability.

In the face of all that’s wrong, all that’s unfair, all that’s tragic and terrible and just friggin’ awful, perhaps the most exciting thing I can be is normal, boring, regular, and blessed with a delightfully uneventful life.

God bless, everyone. Stay safe.

Giving hope its due

Okay, now that I’ve riffed on despair, it’s time to dwell on hope. And healing. And the good things that come along with brian injury.

I can almost hear you thinking, “What good things that come along with brain injury? What are you – nuts? Head trauma sucks, and long-term after effects of even a mild brain injury can be so debilitating as to ruin lives, destroy families, trash careers… and more.”

I agree. Brain injury is a national health crisis and it’s a tragedy and a disgrace that something so common (see the stats in the sidebar) is so little understood and its impact so under-estimated. It’s a travesty, in fact. Last night, I was reading the book Confronting Traumatic Brain Injury by William Winslade. The Amazon review says

Author William J. Winslade suffered from a traumatic brain injury (TBI) as a 2-year-old, when he fell from his second-story porch and landed straight on his head. He’s one of the lucky ones who’s recovered fully, both physically and emotionally; his only souvenirs of the fall are a three-inch scar and a dent in his skull. He warns that of the 2 million Americans who suffer from TBI each year (most of them from car and motorcycle accidents), up to 100,000 of them will die prematurely. More than 90,000 of them will face up to a decade of extensive rehabilitation, at a cost of up to $4 million each. Even a TBI as seemingly minor as a concussion can have devastating long-term physical consequences, causing seizures, memory loss, learning disabilities, and more. However sorry these problems may be, he writes, “the truly debilitating deficits” are the less-obvious emotional effects, “such as social isolation, [which] take their own insidious toll.”

Which is all very true. I can personally attest to it. And that book is ten years old. So why don’t more people know about this stuff? Why is our country — and the world — still forced to cope with so much trouble relating to brain injury. From violent crime to domestic abuse, from learning disabilities to physical limitations, to series of progressively more debilitating re-injuries over the course of lifetimes, brain injury plays a whole lot of havoc with our world.

The thing is — and I’ve read pieces by Dabrowskian therapists saying this is why they became interested in his work — the information we have (and we do have plenty of stats about TBI) isn’t always conducive to knowledge.  Perfectly intelligent people with lots and lost of information at their fingertips continue to overlook and ignore or downplay the impact of head injuries, and refuse to take steps to prevent it. What’s (perhaps) worse, is that perfectly intelligent people, who are capable of understanding the objective impact of head injury, persist in treating TBI survivors as though there’s something wrong with them, that they’re deliberately doing the things they do, that they’re intentionally screwing up, that they’re cheating the system, slacking, taking advantage, and doing any number of other things to “milk” a supposed injury.

Check the blogs of TBI survivors out there, and you’ll find more than a few accounts of difficulties with friends and loved-ones who refuse to factor in brain injury in the TBI survivor’s behavior.

Now, I could circle back around and delve into despair, but I’m choosing a different tack. Why do intelligent people neglect taking the facts about TBI into consideration? Why? I suspect it’s because brain injury isn’t just about facts. It’s about harm done to the singlemost important organ in the body. It’s important not just because nothing works without the brain, but because even if it is functioning somewhat well in a physical sense, if it’s not operating at peak performance, it deprives us of something even more vital to the human soul than motor function or control of our bodily functions — it deprives us of our humanity.

Truly, brain injury is terrifying for most people, because it hits us where we live, in the deepest, darkest part of our souls, where we are most vulnerable. Especially, I think, for intelligent, intellectual, fact-driven people, the emotional impact of brain injury — just contemplating it, to begin with — can be so unsettling that it causes higher reasoning and analytic function to slow, if not stop. Pondering the impact that head trauma can have is, well, traumatic. It kicks off our most basic survival responses. And our fight-flight-freeze response tends to make us abandon high reasoning for the sake of just getting away from the thing that threatens — or just frightens — us.

I suspect that this, more than anything, is what keeps brain injury from being adequately apprised and addressed in this country. And it appears that the only thing that will make us sit up and take notice are tens of thousands of returning veterans — trained warriors, wounded warriors — who are reintegrating into a society that is woefully unprepared for them… but will need to change that, if we’re going to get by in this new century, this dawning millenium.

And that’s where I think hope can help.

Certainly, hope is necessary in any tough situation, but especially in the case of TBI. Mild, moderate or severe, brain injuries certainly leave a mark on survivors and their family, friends, co-workers… often without them understanding why and/or to what extent. But we don’t have to let that keep us down. Yes, there are problems. Yes, there are issues. Yes, there are tremendous difficulties. But with the brain, you never know what’s going to happen next. Some recoveries last months, years, decades longer than anyone expected them to. But abilities can sometimes be restored, where the experts were sure they were gone for good. And where some abilities are lost for good, others can arise in their place — or show up where they weren’t before. Plenty of people have survived trauma that marked them “certainly” for death, and they’ve battled back from the brink. And I’ve heard stories of people who sustained significant brain trauma, only to find that suddenly they could paint like nobody’s business. Or they started writing one day for no apparent reason.

Looking at some of the most brilliant minds of the past thousand years, the brains inside their heads have not always been “standard issue”. Einstein was missing part of his brain. I’ve also heard that Thomas Edison’s brain was malformed. (Note: I’ll have to do more research that one — I’m not finding information about it right away.) Gifted artists and writers have been epileptic, as have some of our most effective leaders and gifted actors and athletes.

And I suspect, the more we learn about brain injury, the less afraid of it we’ll be. The more we realize that it is NOT a death sentence, that it is surivivable, that it can actually impart or uncover abilities and gifts that might otherwise go unnoticed and undeveloped, the less traumatic the mere consideration of it will be. I don’t mean to diminish the suffering of those who have really struggled with the after-effects. And I don’t want to downplay the seriousness of it. I’m just saying, there are two sides to this story — the tragedy and the triumph. And when we can pay as much attention to the triumph as we do the tragedy, and accept them both as possibilities… as parts of the whole of human experience, we might stand a better chance of confronting the challenges that go along with brain injury, and learn to integrate the experience into our collective storehouse of information… and for once, let facts — not fear — govern our understanding of the injured brain.

The gateway of despair

I’ve been in a really up-and-down place, lately. I’m dealing with the residue of various traumas, I’m dealing with the day-to-day crap from various head injuries, and I’m winding down one job to move on to another. In the midst of my cognitive and emotional floundering, I’m hanging in there and falling back on my old coping mechanisms of smiling stoicism and shutting down those parts of me that are prone to freak out over every little thing.

I would rather not use repression as a coping mechanism, but I really need to make this job transition, so I’m just clamping down on the heartache and emotional upheaval… until I’m settled into my new job.

It’s a bit of a gamble, really. I have to remind myself that in another few weeks, I’m going to need to decompress and do some serious “autotherapy” — using guided imagery, time alone to break down, and lots of long walks down country roads… and city streets as well.

I wish I were less nervous about this, but my pattern in the past, when I was moving on from one situation to another, has been to burn bridges behind me, so I had to move forward. Poor person’s motivation. As a result, I have a lot of bad blood in my past that I’m not proud of. I just don’t want to go there, this time. I don’t want to alienate the people I’m leaving behind, so I don’t feel so badly about leaving them.

Fact of the matter is, I do feel badly about it. I have to leave to take this new job. But I don’t want to leave the old one. It’s a wonderful problem to have, in this economy, but I’m still struggling with it on some level.

One of the things that’s helped me a great deal, over the past week has been reading about “Positive Disintegration” — or positive mal-adjustment and separation from “norms” that no longer work for you. The concept was developed by Polish psychiatrist Kazimierz Dabrowski, who (as I understand it) rejected the widespread practice of labelling “maladjustments” as forms of mental illness. His premise, as I understand it, is that as people develop and mature, they inevitably encounter things about the world that don’t sit right with them and that cause them considerable distress.

In fact, the more capable of maturing you are, the more distress you’re going to be in, because no culture is perfect, and there are a lot of things that could — and should — be done differently. When you positively dis-integrate (that is, you un-integrate from the norms of society based on your own evolving and advancing understanding of your own values and concept of right and wrong), you basically differentiate yourself from the status quo and break out to form your own identiy, with your own moral compass.

Unfortunately, standard-issue cultural norms can consider such separation and differentiation as a form of mental illness or psychosis, and plenty of psychology and counseling is geared towards “helping” people adjust to life and be “well-adjusted”. But that’s not always good. Because (for the sake of “peace of mind”) you could become well-adjusted to widespread cultural acceptance of genocidal atrocities… domestic violence…  the gutting of the Constitution… accepting (and promoting) inaccurate military intelligence that warns of WMD… and buying more house than you can afford.

All cultures are a work in progress, and according to Dabrowski (who passed away in 1980 and whose name is — I think — pronounced da-BROV-ski), it’s the mal-adjusted, individually guided, conscience-driven individuals who move the culture forward to a more advanced state.

He treated “dis-ease” and “disorders” as potentials for growth and change, encouraging his patients (and others) to examine their difficulties to see what potential for growth they revealed. If you think about it, this is a pretty revolutionary approach to mental health. And it’s inclusive in ways that excite and intrigue me… and which I’ve long agreed with, though I could never articulate it as well as he does/did.

Where I am now is really in a state of positive dis-integration. I’m un-integrating from the workplace I’ve been in, for nearly a year… de-coupling from people I’ve learned to really like and work with (tho’ with varying degrees of success)… dis-connecting from the “security” of  a permanent job offer that wouldn’t pay me enough to actually live on or give me the skills that will keep me fully employable over the coming years, in exchange for a really great-paying gig that’s a contract with no guarantees but will make me more employable than ever in my chosen field.

I’m dis-integrating in favor of something better, something bigger, something with great potential. And while it’s very exciting on some levels, it’s also terrifying on others. I’m fearful that my brain will fail me, that I’ll become over-tired, that I’ll lose my ability to cope, that I’ll end up where I was way back when, when I was in high-pressure situations and melted down. I’m very concerned about my resilience, if I’ll bring too much stress home from work, if I’ll be able to maintain my effectiveness and productivity. And in moments when I’m especially tired and lonely and afraid, I despair.

That despair, however, can be a good thing. Fortunately, I know myself well enough to realize that in the morning things will quite literally be better. After I get a full night’s sleep, I write a little bit, I read a little bit, and I get on with my life, I’ll not feel so desperate, so alone and afraid. I know myself well enough to realize that the despair is there because something is missing… and once I figure out what that something is, and take steps to address it,  I’ll be able to get on with my life.

Despair is also a good reminder to me that I’m not perfect — and I know it. Someone who had no clue about their impairments and had no clue about how much better off they could be, wouldn’t bother being this down. But I know about my deficits, and I have a very keen hunger for the ideal. So, of course I’m going to feel this way, now and then.

For me, the degree of my despair is the measure of distance between my perceived real and my imagined ideal. It tells me where I’m at and it reminds me that I can’t afford to get cocky. Fortunately, my personality is sufficiently fickle — and bores easily — so I don’t stay stuck for long in that desperate state. But when I’m there, as frightening as it can be, as dark as it can be, as agonizing as it can be, there are lessons to learn. And my life would be far less bright and light-filled, if I paid no attention to them.

When it comes to head injury, chronic illness, PTSD, or any other intractable physical or mental condition that won’t respond immediately to therapy, but takes seemingly forever to get better — if it does at all — despair can be a recurring theme. I can’t speak for anyone else, and not being a trained psychotherapist, I certainly shouldn’t dispense mental health advice (if you feel you’re in mortal danger, please seek qualified psychological help!). But in my case, when despair comes to visit — as it so often does — I find I can use it as a classroom of sorts. It has plenty of things to teach me, in the moments or hours or even days it spends with me. And I ignore/suppress it at my own peril.

Despair doesn’t have to be a bad thing — unless it’s a permanent state that requires medication or other intervention to avoid suicide. It can actually be a valuable part of maturation and personal growth.

After all, it’s easier to find a little glimmer of light, when you’re in a pitch-black room.

TBI and PTSD – The chicken or the egg?

I’ve been giving a lot of thought, lately, to how TBI and PTSD interconnect and “feed into” each other. In my experience, the two are closely interconnected, and they can make each other pretty confusing and convoluted. Each condition changes the brain in subtle but important ways, and when the two interact in one brain/body/mind/spirit, the compounded difficulties can be exponentially more difficult to identify — and treat.

Traumatic brain injury is by its very nature traumatic, and post-traumatic stress disorder comes out of trauma. So, when you fall and hit your head, or you are in a car accident, or you are attacked and knocked out, trauma happens to the body. The body is threatened – sometimes mortally – and the brain kicks in with all sorts of great hormonal and biochemical survival mechanisms. Adrenaline gets pumping. Endorphines start flowing. Glucose gets delivered to muscles. And the less-survival-based reactions we have get pushed off to the side, so our bodies can focus on one thing: survival.

Even if we are not consciously aware that we are in danger — like when I fell down the stairs in 2004, and I didn’t fully realize the extent to which my physical safety had been threatened — our bodies are aware that they are under attack, and they respond accordingly. It’s not something we can control, it’s not something we should control. We need our brains to be able to care for our bodies without our minds knowing how to do it. The problems start, when our brains don’t realize that we’re out of danger, and/or we get caught in a constant feedback loop of detecting perceived danger, reacting to it, stressing out, and never getting a chance to settle down.

That settling down piece is very important. After our sympathetic nervous systems have risen to the challenge(s) of a perceived threat, our parasympathetic nervous systems need to kick in and help our bodies chill out. Rest. Restore. Relax. Digest… Take a break and get back to balance. But if we never take a break and get our nervous systems to relax and get back to normal, we can get stuck in a constant roller-coaster of fear/anxiety/stress/hyper-reactivity that just won’t quit. And traumatic stress eventually turns into post-traumatic stress disorder. Not fun for anyone.

One of the big ways I think TBI contributes to the development of PTSD is in the “debriefing” phase after a crisis or trauma. TBI can impair a person’s ability to self-assess — sometimes we literally don’t know that something is wrong with how we’re experiencing/reacting to life. It can be harder to detect physical experiences and decode behavioral problems, not to mention cognitive ones. And that diminished ability to self-assess makes it more difficult to self-regulate… to consciously and deliberately change your behavior and actions so that you can “power down” and let your over-taxed body restore itself.

At least in my case, when I went through traumatic experiences — let’s take one of my auto accidents as an example — I wasn’t able to think things through after the fact and assess how I was feeling. I literally didn’t know that I was having trouble understanding what people around me were saying. I thought it was them, who were suddenly refusing to speak intelligibly. I literally did not realize that my sleeping schedule was off — I just stayed up later and got up earlier and pushed myself to go-go-go… and then drank and drank and drank to get myself to relax. I wasn’t even able to determine how I was feeling physically. All I knew was, something was up with me, and it really made me feel awful.

So, I pushed myself even more to “keep up”… and it just added to my already overtaxed body being stretched beyond its means. Not good.

A few posts back, I wrote about being wired to survive and all the biochemical activities that take place as a result of some traumatic crisis. The thing to remember about that wiring system is that it is totally independent of rational thought… but rational thought is necessary to deal with its aftermath. The physical experience of all that adrenaline and endorphins and glucose is not a walk in the park. Our bodies need our brains to take over, after we have rushed to safety, to tend to our frazzled nerves and make choices that allow us to relax, regroup, recuperate, and restore the delicate balance in our central nervous systems.

But with TBI, even mild ones, the brain is impaired and it cannot process clearly. So, we can end up making choices that do not help us relax, that keep us on edge, that keep us going-going-going, so we never really get a break from the crisis and drama.

And post-traumatic stress disorders emerge, which further alter our brain chemistry and how we make choices and take action in our world. PTSD actually alters our cognitive functioning. It makes us think differently than we would, under normal, non-stressful conditions. And that different thinking is not always the smartest thinking.

But wait, there’s more…

Impairments to our thinking — our heightened hyper-reactivity, our hair-trigger response systems that are fried and frazzled — can cause us to make choices that are dangerous and risky. Choices that can cause further head injuries. Being all PTSD’ed-out can make us very quick to anger, in situations where we’re likely to get in a fist-fight, even if our opponent is twice our size. It can make us “slow on the uptake” so we miscalculate choices while we’re driving. It can cloud our judgment about whether or not to take up skydiving. And our increased appetite for stimulation can cause us to pursue activities that are custom-made for yet more traumatic brain injury.

And so, we end up with a vicious cycle of traumatic head injury feeding our post-traumatic stress, which evolves into disorders of mind, body, heart, and spirit… and leave us wondering why the hell everything around us is going to shit. Our brains have been injured, and our judgment is impaired. And each condition feeds the other.

I’m not sure how much research has been done on the interactions of TBI and PTSD. I think it’s a topic that’s ripe for harvesting, and we could probably learn a lot from taking a close look at the two pieces of the puzzle. I think that folks being treated for PTSD should also be evaluated for TBI, and vice versa. Having experts and folks in positions of authority say that “most TBI suvivors heal” sends the message that the brain will just take care of itself, and everything will be fine. But while the brain is healing — to whatever extent that may be — post-traumatic stress can emerge, which can feed a vicious downward spiralling cycle that affects not only the mind, but the spirit and the body as well.

And that needs to be addressed.

And I do more of that here…