Always at Tofino

I’ve been thinking constantly about Tofino, that western coast of Vancouver Island, where people swim and surf all year round, even in winter.

For a while, I was into watching parkour, watching folks throw themselves around, over, under, and through whatever obstacle was in their way. And that was great. But there was still a part of me that wanted to see acrobatics that I could (potentially) do — without cringing at the thought of landing hard the wrong way on a solid object. And I was more interested in seeing something in the wilderness, than in the city… something that involved people in dynamic interaction with their environment. Like I am with my own environment.

Then came Tofino. Onto my radar, thanks to YouTube. Surfing in snowstorms. Endless waves that have been rolling in for thousands of years… that can be caught by just about anyone with a wetsuit and a board… male or female. An equal opportunity constant challenge. Not unlike TBI — only much less particular. I think of those waves, deadly as they can be, as being all but oblivious to the presence of humans. TBI, though, seems a whole lot more personal.

Anyway, I’ve been struggling a bit at work, on and off. Struggling with money. Struggling with my marriage. Not constantly. Many days are great, and there are so many good moments. But still, I can’t help but wonder what it might be like to not be here at all… but be at Tofino, enclosed in neoprene, paddling after waves.

What might that feel like? The constant rolling, the chasing, the paddling, the riding, the flying, the falling… the constant ebb and flow, the never-ending crash and pull, the rip tides, the swells, the sky overhead, and the salt on your face, in your eyes, your mouth, frigid water seeping into the tight spaces between skin and wetsuit… I imagine what it must be like, to track through snow to get to the beach… how cold it must be. And how much you must need to want it, to do it. How much you must have to have it. Man, woman, or child. Elder or youngster. Local or import.

I dream of Tofino, having no idea what it’s like, not knowing if I will ever find out. I am almost out of money, for a variety of reasons, many of them neurological, past and present. I am intensely occupied with just keeping viable in the moment, and I am fully invested in living right here, right now. Will I ever see Tofino? Who can say?

What I CAN say is that I don’t necessarily need to be at Tofino to have that kind of experience. Oh, certainly, there is no place like it on earth. But surely some elements of the experience of it can be had, just about anywhere you find yourself. Maybe Tofino is as much a state of mind as it is a place…?

I have friends who like to talk about living capably “in the flow” in terms of being “skillful surfers”. These people bug the living crap out of me. Because they are — almost without exception — extremely un-athletic individuals who love the imagery of surfing without having any idea of what it’s really like to Get Out There in the surf and try your hand at surviving it. They don’t swim, they don’t surf, they don’t even boogie board. They just like the imagery.

But I’m getting prickly. The real thing I need to talk about is how I don’t have to leave the country to get the state of mind I seek — the surfing, the moving, the seeking, the riding, the splashing, the movement. No matter where I am, no matter what I am doing, I can have that quality of living that I seek, simply by putting myself in that head-space. It’s not easy. Sometimes it seems all but impossible. But it can be done. I did it when I was homeless, two decades ago, walking the streets of a very large city in the winter, wondering what would become of me, realizing that no matter where I was or what I was doing, I could choose to think and feel however I chose to think and feel. That was something NO ONE could take from me. No matter what. Unless I let them.

Now I find myself thinking this same way — almost out of money, wondering what’s going to happen to me and my family and my home… dreaming of Tofino and spending my days in the water. I can spend my days however I like, in whatever frame of mind I so choose. I don’t actually have to be in the water to get soaking wet. I can close my eyes… and imagine…

I may be here, or I may be there, but I can always be at Tofino.

Just knowing makes all the difference

I headed off to bed at a decent hour, last night. Then I got caught up in just thinking about things, and I tacked on another half our to my stay-up time. So, by the time all was said and done, it was a little earlier than usual, but not a lot.

Then I woke up early this morning, and after spending half an hour trying to do progressive relaxation, I got up. And here I am.

My temper is a little flash-y, this morning. But at least I’m aware of it. Knowing that, makes it possible for me to not get caught up in it and get carried away. It’s a good start for what’s going to be a long day, I’m sure.

Gotta make sure I take my mid-day break. I didn’t get my break yesterday — I got booked up on my tasks, and I had to clear everything off my plate till I got that done. I did get it done, which was hugely satisfying. But I also missed my break. And now I’m paying for it.

Oh, well. At least I’m aware. And I can manage it.

See, that’s the thing with me — if I’m not aware of what’s going on with me, it tends to get hold of me and carry me away. Like not knowing why I’m upset — or, for that matter, not knowing that I AM upset… it gets the better of me, and then I’m off to the races.

But when I am cognizant of the fact that I have not slept enough, I have been pushing myself too hard, I’m starting to snap out for no good reason, and I need a break, then I can do something about it.

It’s a management issue.

But first I need to understand what I need to manage. And then I can work from there.

This is all assuming, of course, that I have a direction I want to go in, and work in. That I know I have a direction. That I have something that pulls me.

Probably should have named this post “Pull, don’t Push”, because it’s turning out to be more and more the kind of thing I need in my life. I need to be pulled towards what is good and right and desirable, not pushed away from what is bad. I need to have something that draws me to it, that brings me energy and excitement and engagement. When I focus on pushing myself away from what I don’t want, it’s a negative on top of a negative. I may be moving “forward”, but it feels like I’m standing still. Or, even worse, I feel like I’m moving backwards.

And that’s not the best I can do.

Thinking about this, it seems that this is probably one of the biggest hurdles to me in dealing with everything. I tend to focus so intently on my broken brain, that I use up all my energy before I get to my brilliant mind. And then I get worn out and frustrated and I feel like I’m getting nowhere. I may be making great progress, but when I am mainly focused on my setbacks, I run out of steam before I can focus on my strengths.

Seriously, my setbacks may never go away. But if I funnel all my attention onto them, then I can never get to the strong points. And I can’t make progress in the areas where I can make progress. It’s not so much giving up, as it is redirecting my attention to other areas… which may indirectly contribute to minimizing the setbacks I have.

Again, knowing this makes the difference. And knowing that I’m getting bogged down, lets me do something about that and move along to something better and bigger. Knowing that I have something bigger and better to move on to also makes a difference.

It’s all good, it all matters, and it works for me.

Tonight, I am about as alive as any person can be

I am wiped out. Tired from a day full of really good things, and tired just thinking about all that tomorrow will bring. My job is wiping me out. And that’s okay. Because I know it is, and I know it does, and it just means I have every right to go to bed early tonight.

The autumn night is humming with insects, the sing-song cadence of their sawing wings and their scraping legs a kind of tinnitus, the high pitch of life that is always there, even when it isn’t.

I am reading again. Travelogues by infamous writers. Accounts of Greece and Italy and France and beyond. Stories of New York and California. All of them inaccurate, all of them true, with the kind of truth you can only wring from someone who isn’t often studied in school.

School. Huh. I saw a bumper sticker on my way home tonight from my weekly neuropsych visit — Learning is natural. School is optional. And I read the words of individuals who turn their nose up at the academy.

I used to think I wanted to earn multiple degrees. Find a stable job teaching at a good school — not necessarily a famous one, but one where I could dig in and grow some roots, live the life of the mind and make a name for myself. A name for myself… as though my own name didn’t matter. As though I were like a tree falling in the forest who wouldn’t make a sound unless thousands upon thousands of others could hear me loud and clear.

A name for myself… I was blind and deaf and dumb, struggling to prove to myself that all the things that were “up” with me didn’t make me less of a person… and losing that battle daily. The one who needed most to hear my fall in the forest was me, but I was so busy trying to convince others, I hardly paid any mind to myself.

And all the while thinking “… this inner life, this secret place within, these thoughts of mine, these sensations and confusions and all of it… this is who I am. This is what I am. This is all I have to work with.”

Far from it, I know now. But when you’re 28, you’re so damned sure… and all the while, no one was listening. I thought – no, I knew. No one was listening.

Then I crossed the country. Twice. In a 14-foot rental truck. The second trip found me in a vehicle the same color and size as the truck that blew up the Federal Building in Oklahoma City, within a week after the attack. I got strange and wary looks on that trip. But I made it. I did my explaining whenever necessary. And I kept moving.

Keep moving… that seems to be the key to my live-liness. Not so much like a shark, as a small bird that must constantly eat to keep its energy up. I move with the cycles, picking up speed when the seasons change, so I can make a smooth transition into the next round of sun or rain or snow or wind or whatever.

And the night is my friend. Most of the time.

Tonight,  I am about as alive as any person can be. I ache like the dickens — I swam the other day, wearing an old suit because I misplaced my new one. The old one didn’t fit me well, but I swam anyway. The first time in months. Now my body aches, and my neck and back crack. Just as well. I needed a reminder that yes, I am here and yes, I am alive. Nothing like a little chilly water to wake up the senses. And remind me, there is more to life than warm weather. Warm water. Warm. Cold has a life of its own, and cold has its place, too.

Hungry does, too. And although I’ve eaten my dinner tonight, alone and on my own for the evening, I’m still hungry. Eager for something else. If I have some sense — and I believe I do — I’ll call it a night and make my way to bed, with a book to keep me company till sleep meets me, or my loved one gets home, whichever comes first.

Tonight, I am about as alive as any person can be. And I realize that I need to have people in my life who are as open to LIFE as I am… people who are as welcoming of the full range of human expression, as I am… people who are as undaunted, and as intentional as I am.  People who press out to the limits of what they are capable of, and find out what’s out there, who aren’t held back by what “should be” or “what is” — according to what others say.

This change in my needs for company has been in the making for the past year or so. It’s been stirring in earnest, for the past few months. And over the past weekend, when I saw a bunch of people I used to work with, I realized that the people I got along best with, were the ones who were the most comfortable with themselves, and the most comfortable with risk and reward. The kind of folks who wring what they can out of life — and themselves — and then come back for more. It’s not that they’re not afraid. Far from it. They simply have a tolerance for the experience of fear. And it’s not the ONLY thing they experience.

And they keep learning. I used to want to spend my life in school. Then I realized my life IS my school. I probably won’t be going after those degrees anytime soon. Life is much too interesting, to spend inside the walls of an institution, telling me what to think and say and how to act. The privileges of membership only compensate for so much.

I found this on YouTube tonight:

Scenes to live by.

Amen.

I’m tired.

Good night.

Got to bed late, woke up early

But I got a lot done yesterday that was hanging over my head, and again this morning I got things done that were — again — hanging over my head.

I have effectively cleared out a handful of things that were taking up space and time in my head, and now I am free to do my main work today. I cleared out a noontime “optional” meeting, so I have a little time to step away and take a breather around mid-day, too.

This is working out well. I’m tired, but that’s nothing new. And I have freed up a ton of new energy to be able to focus on a big project I have in front of me.

See, that’s the thing — when I put things off, they back up and take up a lot of extra attention, with me trying to shuffle and juggle them with the other things I have going on. It’s just so counter-productive. At the time, it feels like I’m energizing myself, but over the long haul, it takes an increasingly demanding toll on my total resources — when I don’t have extra to spare.

The great thing about clearing things off my plate is that I have all this energy free up, and as it sinks in that I don’t have to do such-and-such, I feel increasingly relaxed and more in command of my life. Like I’ve got more mastery.  And I’m the one running my life… rather than running from my life… which is what happens when I have all sorts of to-do things on my ever-expanding list.

Right here, right now, I’ve overcome two HUGE roadblocks that had me stymied for months — literally months. I’m freed up from them, and I have my day ahead of me to do some great work. I feel so much more relaxed, now that I won’t have to deal with this boss from hell and their mind games. That energy drain has also been lifted off me, and I can get on with my day — and my life.

All in all, I have to say Life is good!

:)

Trauma + TBI = Trouble

I am writing this after several conversations and some reading — one conversation with a former soldier who was in Iraq during the first Gulf War, several conversations with a friend of mine who sustained a brain injury about three years ago, but has never gotten help for their injury — and is making increasingly poor choices about their life, their relationships, etc… all the while saying they need to find a therapist to help them deal with childhood trauma. They need a neuropsychologist, more like… As for the reading, check this out: Two Must Reads: The struggle for comprehensive PTSD and TBI treatment. I skimmed through it quickly, but I’ll have to go back to it. And I recommend you check it out, as well.

In thinking about the conversation I had with the ex-Marine, what struck me is how he talked about dealing with the incredible challenge of having to do things that were against his own morality, like kill people and destroy things. I was reminded of my post a while back about how war damages the souls of soldiers when I was talking to him, and he said there were several things that he and other military members of his family have done to cope.

The first is talk to somebody who understands — veterans in the family with whom he and other soldiers in his family can talk, have been so critical. The other is to find a way to make peace with things. Find a way to make it okay, on some level, that this is happening. Through faith. Or some sort of belief system.

In thinking about the conversations with my BI friend, I am starting to take notice that all their talk about trauma and dealing with it, is set against a backdrop of the BI they sustained five years ago. We have mutual friends who are therapists who are convinced that a lot of people are walking around with suppressed memories of terrible abuse in their childhoods, and that those repressed memories are making them do the things they do. With my BI friend, I suspect that they have been getting the “party line” that they are dealing with old memories coming up, and they don’t know how to emotionally deal with them. Now, I know for a fact that this friend didn’t just sustain a BI three years ago… Back around 1999, they also slipped on some ice, fell and hit their head pretty badly. They were dizzy and disoriented after it, and I noticed them being more volatile afterwards. Then they seemed to get better (although their marriage has been a bit rocky over the years). In the past three years, they’ve made an amazing recovery, and if you didn’t know them before, you probably would never guess that they have this going on with them. But I can tell. Maybe because I’m more sensitive to it — and better educated.

Anyway, this friend of mine is in pretty bad shape, financially, yet they don’t quite seem to get it. They have serious impulse control issues with money, and their spouse doesn’t actively monitor what they are spending on, how much, and how often. So, they have ended up in a jam that might cost them their car or their house. But they keep going along just doing what they do. Whenever I suggest that they might want to take a look at their spending, they get defensive, aggressive, combative. Not pretty. They just blow up like crazy. So, I stopped talking to them about it. They think they’ve found a good therapist, but like the others they have gone to in the past, they may end up not mentioning the BIs, and they may start treating their symptoms as purely psychological or emotional ones.

I really need to say something more to them about this. I think I need to discuss it with my neuropsych. My NP is probably not going to be able to say much, but I do need to ask them if they know anyone like them who has the same orientation towards healing and recovery. I suspect that along with my friend’s childhood trauma, there are some neuropsychological issues that need to be addressed — and it could be that by simply changing a few of the ways they go about doing things, they could benefit immensely.

I just need to find a good way to bring up the subject. They know about my recovery, and they have said many times that they are amazed by how far I’ve come. And, come to think of it, they have also said they wished they could find someone who is like my NP for themself. The thing they have going for them, is they have documented medical evidence of their most recent brain injury. It’s all there, complete with MRI showing the places where they have lesions. So they could get medical coverage to help them defray the costs. That’s huge, considering they have almost no money. Maybe getting some help will help them change that.

So yes, I do need to bring up the possibility of them seeing a neuropsychologist. They can get pretty paranoid, so I need to be careful how I phrase things. But I at least need to try. They need help. And I might be able to help/support them.

One of the things I hear them say is that they’re “too old”. They’re in their 60s and they feel like they’re getting old. But I really believe that they can turn things around. With some basic logistical changes similar to what I’ve done, I suspect they can revitalize their life and not only add years to their life, but add life to their years.

I just hope they don’t end up with a therapist who stirs everything up, tries to get them to “feel their feelings” (trust me, they have no problem doing that), and disregards their TBI history, because they are convinced that all their problems are trauma related.  They might only be partly right — trauma includes traumatic brain injury, and I would hate to see that piece of their puzzle ignored.

Oh, Sisyphus

Here we go again...

I’ve been thinking about the acquaintance of mine I wrote about the other day, whose picture was online regarding a presentation they were doing about TBI. I’ve been a little bit haunted by the confused, almost vacant look in their eyes, and it won’t leave me alone.

I think one of the things that’s getting to me, is wondering, “Do I look that way sometimes?” I know people I work with have commented that I looked confused at times, when I was just thinking… and now and then people do look at me strangely. I worry that I might look like that, too… of if not now, eventually.

The other thing that’s getting to me is the thought that no matter how well I may think I’m doing, TBI can sneak up on me and make my life more interesting than I expected. And when I’m tired, which is a lot of the time, it can get the better of me. I just don’t want to get dragged down into the dregs of human existence by this thing. I need to keep learning, growing, living. Not constantly have to push that boulder up the hill all over again like Sisyphus.

But I wonder… with all the talk about how mild traumatic brain injury can lead to premature cognitive degeneration, including Alzheimers and dementia, I’ve been feeling more and more like I have to get everything done while I can, before I start to lose my mind. It really sucks, to have this imaginary deadline, before which I have to do all my living. And then what? Then what? I have no children to take care of me when I’m elderly — then again, I don’t have any kids to put me in a home, if I want to look on the bright(er) side. I don’t have a lot of money, I am certainly in no condition to retire in 20, or even 30 years. And I wonder  — by the time I get to be retirement age, will I even have my wits about me, or am I going to end up in some state institution, muscles wasted away, gut hanging out, slumped over in a wheelchair parked along the edge of the ward’s hallway, drooling all over my johnnie and pissing myself?

Jesus, what an image. But if it’s going to happen to me, I doubt I’ll be alone. Not to make light of it or diminish it in any way, but given the crappy track record of how this country treats its veterans, I might very well be housed along with hundreds of Iraq/Afghan war vets who sustained TBIs and never got proper help.

The thought of being tossed aside and disposed of by society — as happens to so many elderly and cognitively impaired — unsettles me, and it makes me want to pack as much living into my present life as I can fit. Of course, then you have the case of me getting fatigued and having things turn to crap, so there’s only so much living I can do. Some days, it feels like a losing proposition all around, and I would like nothing more than to STOP EVERYTHING and just enjoy myself for a few hours, while I still can.  But then it catches up with me again.

And that picture of that old acquaintance flashes in my memory again… I wonder if that’s what’s happened to them…

If it is, I wish them well, and I hope they can find some peace, as well as their “center” where they can be calm and happy. I hope they don’t suffer too much. I hope that was just a bad picture of them.

Their life is theirs. Mine is mine. And I have to live my life to the best of my ability, for as long as I’m able to. I have to find the things that save me. That make my life worthwhile.

One thing that saves me is work. It’s something I can put myself into, and lose myself in. It’s something that gets me out of my head, out of myself, and lets me be part of something bigger than myself. It helps me put my self-pity and fear aside, and focus on a different reality than the one that rattles around in my head. It also ties me to others in structured, productive ways, and that’s a life-saver.

Speaking of work, I have to do a little bit of it tonight, before the next week starts. It gives me a head-start and keeps me mindful in the morning of what I have waiting for me. I have a bad habit of spacing out on Monday mornings about what I’ve got going on. So, doing a little “warmup” the evening before gets me into the action at a pace I can handle.

For now, I’m fine. I am present and with it, and I’m productive. Who knows what the future will bring? Who knows what my life will become? Who can say? All I know is, for now, the boulder is not rolling back down the hill. I’m moving up. And for now, that’s okay.

Making Up for It

I’ve been thinking a bit about my situation at work, over the past few days. Now that my problematic boss is moving on, I am very hopeful that I’ll be able to break out of the rut that I’ve been in, progressively more and more, as a result of trying to figure out what the hell they actually want me to do. We have been at cross-purposes ever since I started, and while I haven’t wanted to make a big issue out of it, the dynamic has really dragged both of us down.

I think part of it is, they are not a manager type of person. They are not at all a boss type — at least not the kind that I’ve dealt with in the past. They also are pretty insecure with obvious pet peeves about personal issues, and that doesn’t help things. They’re also young. I think in another 10 years, they may become a good boss. But they have a ways to go.

Or, it could be me.

There is a chance that I have contributed to the dynamic in some negative ways. I haven’t always been easy to work with, and I haven’t always been as communicative as I should have been. And there have been times when I totally screwed up.

Those times really worry me, now and then. When I’m tired and feeling insecure, I really get into a funk and feel like I’m teetering on the edge. I start to wonder if this is going to work out, after all, and I start rethinking my whole career path.

But that’s really the sort of thing I do when I’m tired and am in need of a boost that will get me out of my funk. When I stop and consider what’s really going on, I realize it’s just escapism and a need to get my mind off things.

What I really need to do, instead, is settle in and find a way to make peace with the areas where I have real issues — find a way to work with the things that are much harder for me now, and find a way to keep myself in the game, in spite of it all.

My strategy, which has been working out, has been to focus on the areas where I am strongest, rather than trying to fix all the areas where I have these new difficulties. I do have some areas where I am second to none, and I try to focus as much of my (and others’) attention on those areas, as possible. Instead of fretting and worrying about things that I screw up and trying to make them 100% right, I am cutting my losses and moving on to areas where I am actually strong. And that’s good.

Instead of worrying about having overlooked some of the finer points I messed up (like plugging the wrong code into the wrong pages and having everything go straight to hell for a few weeks), I try to fix what went wrong quickly, and move on to the things that I do right — like developing and refining the overall strategies of other parts of my work, and cultivating a good understanding of how things are put together on a larger scale, so I can contribute to discussions about where to go next with our group strategy. I also keep my eyes open for chances to step in and contribute things like finding things that are done wrong, and fixing them, or noticing patterns that people in management might find useful to factor into their overall business planning.

I have to get my mind off the areas where I messed up – and quick. Because I can get stuck perseverating about how I screwed up this and that and the other thing, and before you know it, I’ve dug myself into a hole and am convinced I will never do anything right. Ever again. I have to stop that downward slide ASAP, or things can turn sour for me in a hurry.

This focus on my strong points rather than my weak ones, is a departure from how I was raised, where everyone was expected to be uniformly strong in many areas, and you spent all your time trying to smooth over your weak spots, consequently neglecting your strong points. I’ve spent much of my life doing that, in fact. And it’s very counter-productive. In the extreme. Nowadays, I have to just kind of shrug off the screw-ups, apologize, try to make it right, and get back to doing the things I can do right — as quickly as possible.

That not only gets me away from my funk about messing up, but it also keeps me focused on the Good Things I Can Do. Very important. Very very important. If I don’t do that, I’m toast.

It’s all about success, ultimately. I’m not talking about “success” the way others define it. Rather, it’s about my own measure of success — how much I’m learning each day about my job, about myself, about my work, about my place in the world. How much I’m growing, how happy and fulfilled I am.

Of course, it still matters how others perceive me, so that I can continue to have a job and I can keep doing what I do to earn a living. It’s always a balance, really.

Ultimately, I think we all have something in ourselves that makes us unique and effective in ways that no other people can rival. If we can concentrate on those parts, and seek out those parts in others who can complement us, everyone can have a place, doing what they do better than anyone else… instead of everyone trying to do everything, and not doing it as well as it could be done.

Onward.

Keeping track

Keeping clear, keeping up

Lately, I’ve been having some issues with losing track of things. Important things, like car registration papers, bills, and notebooks that have information in them I need. Fortunately, I’ve managed to get hold of the critical pieces. If I have a copy of something, there’s an excellent chance some bureaucrat has a copy filed away somewhere.

It’s a little troubling — but it’s also a good reminder that I really need to make some extra effort at times… often when I am least inclined to do so.

But it’s gotta be done — that extra effort. And I’ve gotta keep steady with keeping track of things. Who else will do it, if I don’t? No one, that’s who.

I’ve been doing some things lately to keep me better organized — things like cleaning off work spaces that are covered with papers that may or may not have any use or meaning for me, anymore. I have a general rule — if something has laid in plain view for six months or more and hasn’t been picked up or moved or referenced, it needs to find a new home, usually in the trash can.

Clearing out my work spaces is the first step in keeping track of my life. I need to regularly clear out the stuff that’s taking up necessary room in my life, to make more room for the things that I care about and want to spend time on. It’s the tangible equivalent of not doing a bunch of stuff that serves no purpose in my life in general. It frees up my attention from having to parse through a lot of crap that just gets in the way.

In many ways, keeping track is as much about deciding what I need to keep track of, and getting rid of the rest.

Okay, time to switch gears with this post. This morning I was looking at my blog stats for what people are searching for, and one search led me to a site that featured someone I met years ago, who I met around the time when I was first coming to terms with my TBI experience(s). They had a story similar to my own, though with fewer injuries. The impact to their life had been dramatic, and they had a long road of recovery after what had been a “minor” car accident.

We met a couple of times for mutual info sharing and support, and then we went our separate ways. When we met, back then, they seemed like they were “with it” for the most part. A few blips here and there, and a lot of hidden issues they talked about overcoming. To all appearances, they actually looked pretty normal — as so many of us mTBI survivors do.

But when I saw their picture online this morning, I was pretty shocked. They didn’t look like they were “all there”. If anything, they looked disoriented and a little frightened. And this was an official publicity shot for some sort of presentation they were doing about brain injury.

Holy crap. It’s only been a few years, and they’ve gone downhill that quickly? How is this possible? Had something else happened to them? Had they been injured again? Had all hell broken loose?

WTF?!

Thinking back on the interactions I had with them in the past, I do recall that they were pretty “into” the drama that can accompany TBI. They were also into highlighting the difficulties and challenges they and other BI survivors face, and when I talked to them about my situation, I got a hefty dose of pity, which didn’t sit well with me. It’s like they felt sorry for me and all my difficulties. “I’m sorry it’s been so hard for you,” is what they said. And I actually stopped checking in with them after that, because I don’t want pity and I don’t want anyone feeling sorry for me, even if they think that’s what they should do.

Make no mistake, this is NOT an easy thing to live with. But I’d rather be completely ignored, than have anyone’s pity.

“To show pity is felt as a sign of contempt…” is what Friedrich Nietzsche said, and while I’m sure I’m not quoting the whole concept, and it’s out of context, that’s how I feel — pity is a sign of contempt, assuming that the person facing down a challenge is unable to deal with it, and somehow needs special treatment and consideration as they cope with what comes along.

The last time I had contact with this person, they showed me pity, which felt like contempt. Don’t make me out to be less than human — that is, open to all the variety of life and able to meet my challenges with all my resources — just because I’ve sustained a number of TBIs.

And now I see their picture — of them looking somewhat disabled, actually. I’m really upset by this for a number of reasons.

First, it’s like they deliberately took a step back and they took on this persona of a BRAIN INJURY SURVIVOR, where (even if they are a survivor), the first part of their identity is about Brain Injury. It’s like they’ve made this who they are, and they’re going with it, without questioning it.

Second, it feels like they’ve sacrificed their own health and well-being for the sake of others. They were pretty active in brain injury support activities when I met them, and I believe their involvement has deepened in their own community. When I met them and other people they were working with, there seemed to be a lot of talk about everything they had to give up, because of their injuries. And when I talked about just wanting to live my life and get back into my life, one of them actually said, “There’s nothing wrong with you!” as though my unwillingness to give in to traumatic brain injury meant that I didn’t have any issues going on.

I’m still a little miffed about that comment. The person that said that had no idea what it’s like to have to learn to look as normal as possible, ’cause you’re gonna get yer ass kicked, if you let on that you’ve got problems, and you spend your life faking it till you make it… but you never quite make it.

Anyway, it also really bothers me that the people promoting this presentation would run a photo like that — like they had to find a head shot that made the person look a little on the disabled side. You could have taken that photo in different ways, or chosen a different one from the batch. But no, they chose one that made them look like an addled deer in headlights. How this is helping, I’m not sure. Unless it’s intended to make everyone feel bad for this person and treat them differently because they’ve had such a hard time of it.

Personally, in my own life, screw that. I do my best to present as best as possible, each and every day. I might have chronic pain, insomnia, sensitivity to light and sound, awe-inspiring levels of distractability, anger/rage/temper issues, impulse control, and a piss-poor working memory, but goddamn it, I’m not going to walk around with my ass hanging out just ’cause. I still have my pride. Certainly, it gets me in trouble at times, especially when I over-extend myself and I’m not making the effort to pay attention, but I’d rather push myself and see what all is possible, than give in to how I’m “supposed” to look or act, or whatever, and end up with less of a life than I could have.

I guess at the bottom of it, I feel badly for this person. Not because I think they can’t do better, but because I really think they can. And I hate seeing them slipping away because “that’s what happens to TBI survivors.”

Screw that. And screw anyone who says that it’s inevitable. My God, there is so much evidence all around us, each and every day, that all we think we know about the brain and how it adapts is not nearly enough… it’s a waste of time to succumb to assumptions that are based on past research and public opinion. I’m probably going to piss off some people in the ranks of those who believe that TBI relegates you to a life of permanent disability on some level or another, but this is my opinion and my belief. And I’m entitled to it. If I’m wrong, I’ll find out. But in the meantime, I — and many other people — truly believe in possibilities beyond our wildest imagining. And that’s not going to stop anytime soon.

That being said, I have errands to run in my regular life. There’s trash to take out, and a pet to take to the vet. And this afternoon, I’m going to get together with a bunch of friends I lost track of after my fall in 2004, when everything went to shit. None of them know anything about this, and that’s the way I’m going to keep it.  If anything, I want them to see that I’m doing even better than I was before I lost it in 2004.

Onward.

Looking inside my head (again)

The view inside my head

Woo hoo! Got great news at work today. One of my bosses from hell is moving on to another job.

Saints be praised. I’ve been singing “Jingle Bells” all evening. Feels like Christmas to me…

I’ve still got one difficult boss to deal with, but one is a whole lot easier than two — who are constantly at cross-purposes with one another.

Anyway, in honor of the glorious occasion, I broke out my old MRI files and I’ve been looking around inside my head again. It really is fascinating stuff… I have a pineal cyst, which is just some fluid in a little sac at my pineal gland. No biggie. 40% of autopsies reveal pineal cysts, so I’m not alone. It’s really wild, to be able to see the space between my brain and skull, and imagine it filled with fluid. And all those empty spaces… I dunno about that… ;) I have some seriously cavernous areas.

But I can’t worry about that. Not much I can do about it, anyway.

It really is a remarkable thing, to be able to look inside your own skull. I use the 3DViewer from RMR Systems, Limited which is free and pretty easy to use. Mouse around. Click and drag to cut across planes and create slices. I can zoom in and rotate and see angles and slices and look at all the different parts of my brain.

Back when I first got my MRI and started looking at my brain, I intended to learn all the different parts and figure out what was what. But there are so many different parts to it – you wouldn’t think that such a small area could be so vast, but it is. I eventually gave up… there are so many variations on the sizes and shapes of the different areas, I couldn’t keep up. Plus, I get the distinct impression that what “they” know about the brain is only half-baked. There’s a lot more to it that we have yet to learn about. So why get attached to a certain way of thinking about things, when it’s all subject to change?

Anyway, it’s getting late, and I’ve toyed around in my brain about enough for one day. Time to rest. Time to rest.