Reaching out… reaching in…

Something in me wants like crazy to reach out, to make contact, to connect with another human being on a level that has absolutely nothing to do with anything we know about each other. Not our strengths, not our weaknesses, not our issues, not even our victories.

Something in me craves the kind of connection you can only get with total, utter strangers… the kinds of people I feel most comfortable around, who know nothing about me and will never learn anything more about me, than what the moments we share have to offer.

There’s something clean in that, something pure. Something unadulterated and untarnished. There’s something divine. Utterly, inexpressibly divine.

A weird beetle is flying around my room. It’s been warm, the past few days, and the bugs are coming out again. Grass is growing again, despite the late date. This bug has been in my study for the past day or so, buzzing around, climbing on my curtains, inching closer to one of the three lamps I have on to light my workspace… to light my way.

In some ways, I feel closer to that beetle than I do to many people. It’s an ugly thing, really. Not very attractive, and sort of prehistoric looking. There are lots of them around my place during the spring and late fall. They gross out my spouse, who can’t stand dealing with them, but there are so many of them around, you can’t avoid them. But every encounter I have with them is pure and clean and straightforward: You are in my home. You will not find anything interesting to eat in this place. You should not be in my study or my bathroom or my hallway. You need to go outside, and I am going to take you there. Now.

End of contract. End of story. And no one has been hurt in the process.

How unlike my human exchanges.

I had a very probing session with my psychotherapist today. I suspect they think that I am making up my issues to “game” the system and get money out of someone. I suspect they think that I’m misleading my employer and overstating my abilities, because I need the paycheck. I suspect they can’t quite believe that someone with my history of head injuries can possibly be as functional as I am. I haven’t even told them about the other two from my early childhood that I remembered recently.

My session brought up issues that I have frankly not dealt with, about how I relate to my immediate family. The holidays are upon us, so what better subject for a shrink session? And now I am feeling sick, because the impact of some Very Bad Things that have happened since my fall in 2004 never really sank in.

Until now.

This, I suppose, is the price of increased awareness — increased awareness and sensitivity to all the crap that tends to fly about. Disturbance and distress and falling ill with nervous exhaustion. There we have it.

Part of me wants to crawl back in my cave and not sweat the big stuff that goes on. Part of me wants to go back to pretending that everything is just fine, and that my options in life are unlimited. Part of me wants to go back to not being therapized on a weekly basis. Part of me wants to just get on with my life. But then, there are Very Bad Things that need to be dealt with.

So, I guess I’ll just deal with them. Like all the other crap that comes across my path.

I’ll just deal with it. All of it. And make sure I get enough sleep and take my B vitamins.

Don’t forget the B vitamins.

Muscle doesn’t build itself

I was talking to my therapist the other week, trying to describe to them the pain that I’m in on a regular basis. They were (understandably) concerned, and I found it difficult to relate the information objectively without alarming them.

I hate when I alarm people, simply by being and living the way I do. I’m not trying to shock them, but when folks become acquainted with my interior life, yes, it can be shocking.

Anyway, they recommended plenty of exercise (which I’m doing), and they suggested physical therapy might be useful.

Now, I can’t imagine that anyone is going to offer me physical therapy that can help my situation. What exercises could I possibly do, to address the myofascial all-over pain that wreaks havoc with my sanity? What specific routines could anyone recommend to ease the aching scream in my joints and the connecting points in my lower back, hips, knees, elbows… you name it…?

It’s not that I dispute it can be addresed — this pain, I mean — it’s just that I’m skeptical of the ability of others to prescribe a suitable solution for me. I’m just not that easy. Or easily explained. Besides, the pain tends to travel. Where is it today? Only today will tell.

What I do not dispute is the benefit of exercise. Daily. Routinely. As part of my waking-up ritual. I get up, and the first thing I do, is get on that exercise bike. Then I stretch. Then I lift. Not a lot of weight, but enough to notice it’s there. Enough to make my muscles burn in a good way, get my heart pumping and my skin sweating. Enough to remind me how far I’ve come, and how far I have to go.

One of the things my therapist mentioned was that physical therapy can help the knees. This I know. You help the knees — joints which can’t be helped directly — by strengthening the muscles around them. You don’t fix the joint. You fix what’s around it, what’s supporting it, what’s holding it together.

And it works. It took physical therapists years and years to figure that one out, and now we can all benefit.

From where I’m sitting, the rest of me benefits in the same way. The weak and crackly shoulders I have, the weak and crackly back I have, the weak and complaining legs I have — hips, knees, ankles — are all improved when I strengthen the muscles around them. Even my neck, which is a wreck, most of the time — pain and stiffness and the third vertebra from the top turning out to be pushed out of place every time I pay close attention to it — is helped by a good dose of concentrated lifting. In fact, when I was doing a lot of heavy weights, back about 10 years ago (and pretty much built of solid muscle, thank you very much), my neck always felt better when I did 70 lbs worth of shrugs.

You should have seen the looks on the faces of the other cubicle dwellers I worked out with, when I walked over and grabbed two 35-lb dumbells off the rack and started shrugging away. Priceless. But it worked like a charm. By the end of three sets of 12, my neck felt 200% better than it had before. And the benefits lasted for days. And the same was true of the rest of my body. I always felt so much better when I lifted regularly. And one of the things I resent losing the most, after my last fall in 2004, was the ability to go to the gym and work out without overwhelm or anxiety. I miss it. I still miss being able to go out and work out. But for now I’m doing what I can in the privacy of my own home.

I do what I can to build muscle. And it doesn’t get built on its own. It takes work and concentration and dedication to a greater cause. It takes persistence that defies logic and human resolve. It takes tenacity and a small dose of fear of what might happen if I don’t do it. Muscle doesn’t get built on its own. But when you do build it, it works for you.

Sometimes you gotta give a whole lot, before you can expect to get anything (no matter how small) in return.

I guess this is what I’m doing with my life, these days –giving a lot to get something back. Building up the proverbial muscle around the weak spots in my life — building up routines and strategies and techniques and tactics, to support the weak parts of my brain, the parts that got broken, the parts that won’t be fixed, no matter how determined I am. I’m re-routing around the burned-out shells of my old domains. I’m blazing trails through the jungle, to skirt the blown-up bridges in my neural network. I’m carving out new pathways in uncharted territory, and I’m moving what deadfall I can from the paths I must tread.

A blown-out knee, in and of itself, cannot be strengthened. It’s just bone and cartilage and connective sinews. But the muscle around it can — and should — be strengthened, and function can be restored to the leg and the body. A broken brain, in and of itself, may or may not heal. The neural connections that get shredded, are frayed for good, and nothing can return them to their original pristine state. But there are other ways of connecting disparate regions, and there are plenty of strategies and techniques available to get from Point A to Point Z in fine style.

I can sit around and bemoan my fate as an mtbi survivor with a whole truckload of residual issues… I can feel sorry for myself and worry about whether I’ll ever get back exactly the capabilities I had before… or I can take the focus off specifics and focus more fully on results — achieving the same sorts of things I did before, but now through different means.

A lot is possible, if we consider alternatives. But the alternatives won’t come out of the woodwork and make themselves known to us without our direct involvement. And we’ll never find out what does and does not work for us, if we sit around waiting for someone else to tell us what our next steps are.

It was a real struggle for me to get out of bed this morning, and I resented most of my workout with a begrudging resignation. But I did what needed to be done, and by the time I was finished, I felt ten times better than when I started. Day by day, bit by bit, I make headway and I find my way further down the path I wish to tread. Work doesn’t do itself. Workouts don’t do themselves. Muscle doesn’t build itself.

That’s all on me. And I’m glad of it.

Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

• My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.

• If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.

• It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.

• My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB

Journaling for TBI Recovery

I’ve been really thinking a lot about the two articles I read lately — the first Offensive Play – Football, dogfighting, and brain damage, by Malcom Gladwell in the New Yorker, and the second The Magnificent Minnesota Nun Brains by Ken Korczak.

They are both really good reads, and I also plan to read Aging with Grace by David Snowdon, which talks in greater detail about the Nun Study and what they learned about how you keep your brain and cognition intact, even in the face of considerable damage.

A bunch of things can be done — living a structured life with like-minded people, keeping a positive attitude, not fretting over material things, tending to your spiritual well-being, and (perhaps most significant to me, these days) keeping a daily journal where you mindfully and deliberately keep track of your daily life and critique yourself to improve where you can.

This matters tremendously to me, because after reading the Malcom Gladwell piece, I got to thinking about my childhood, how rough-and-tumble it was, how many times I got hit on the head in the course of playing, and how many times I was dizzy or woozy or out of it, after falling or colliding with something/someone.

Excerpted from the Gladwell piece:

But what sidelined the U.N.C. player, the first time around, was an accidental and seemingly innocuous elbow, and none of the blows he suffered that day would have been flagged by a referee as illegal. Most important, though, is what Guskiewicz found when he reviewed all the data for the lineman on that first day in training camp. He didn’t just suffer those four big blows. He was hit in the head thirty-one times that day. What seems to have caused his concussion, in other words, was his cumulative exposure. And why was the second concussion—in the game at Utah—so much more serious than the first? It’s not because that hit to the side of the head was especially dramatic; it was that it came after the 76-g blow in warmup, which, in turn, followed the concussion in August, which was itself the consequence of the thirty prior hits that day, and the hits the day before that, and the day before that, and on and on, perhaps back to his high-school playing days.

This is a crucial point. Much of the attention in the football world, in the past few years, has been on concussions—on diagnosing, managing, and preventing them—and on figuring out how many concussions a player can have before he should call it quits. But a football player’s real issue isn’t simply with repetitive concussive trauma. It is, as the concussion specialist Robert Cantu argues, with repetitive subconcussive trauma. It’s not just the handful of big hits that matter. It’s lots of little hits, too.

That’s why, Cantu says, so many of the ex-players who have been given a diagnosis of C.T.E. were linemen: line play lends itself to lots of little hits. The HITS data suggest that, in an average football season, a lineman could get struck in the head a thousand times, which means that a ten-year N.F.L. veteran, when you bring in his college and high-school playing days, could well have been hit in the head eighteen thousand times: that’s thousands of jarring blows that shake the brain from front to back and side to side, stretching and weakening and tearing the connections among nerve cells, and making the brain increasingly vulnerable to long-term damage. People with C.T.E., Cantu says, “aren’t necessarily people with a high, recognized concussion history. But they are individuals who collided heads on every play—repetitively doing this, year after year, under levels that were tolerable for them to continue to play.”

The bold parts are the ones that apply to me especially. Because in the course of my life I have had a ton of little hits. Too many to count, really. All those ballgames, the football, the lacrosse, the baseball, the soccer… all those times when I got clocked or had my bell rung or just plain fell and smacked my head… even the times when I didn’t smack my head, but had my head snap back as a result of a fall or a hit or a collision… It’s crazy, thinking back, and I can see how all those impacts of my childhood could easily have added up to a weakened network of connections, which made me more susceptible to more serious effects, long after I quit playing rough sports.

Perhaps my history of impacts explains why I could be in relatively minor car accidents, but be so tremendously impacted by them — unable to understand what people were saying to me, unable to initiate conversations with the police (that would have cleared my record of inaccurate info that the cops entered on the report, in order to cut the guy in the other car a break) and thus  kept my insurance costs lower — unable to function adequately in my jobs after the accidents, so that I literally had to leave and find other pastures.

Maybe that’s why one of the accidents I was in affected me so profoundly, but it didn’t affect the other person who was in the car with me. If my neural connections had  been compromised over the course of 18 years of rough play and impacts, while the other person in the car led a relatively sheltered life that was not as sports-oriented (while I was out on the field, slamming into people and things in various games, they were sitting on the sidelines, playing the flute in the band), it would make sense that the effect of double impacts — front-end and rear-end collisions — would be greater with me.

Of course, there are a ton of different variables, but if repeated exposure to head impacts plays a role, then it makes sense that I’d be more susceptible than I ever guessed I was.

Anyway, everybody’s brain is different, and I understand that self-diagnosing and trying to explain my own situation from inside my addled head can introduce problems with logic and deduction, so I could be wrong about it. I don’t think I am, but I’ve been wrong plenty of times before. The main thing I’m concerned with, these days, is how to avoid the kinds of problems other people with repeated head trauma have encountered, namely, the dementia and cognitive degeneration that can develop over time. Like everyone (who is lucky enough to be alive), I am getting older, and like many folks, I’m concerned about cognitive decline.

So, my thoughts turn to the Mankato, MN nuns, the School Sisters of Notre Dame. I think about this bit of info, in particular:

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

I need to do what Sister Mary did. Okay, I’m not a nun, and believe you me, there is no way I’d qualify to join them, even if I wanted to. Fundamental human differences (like anatomy and philosophy) preclude that. But if Sister Mary could manage to remain clear-headed and lucid despite large-scale deterioration of her brain tissue — including strokes and Alzheimer’s — then heck, why can’t I?

Seriously — the nuns are human, and I’m human. Perhaps Sister Mary didn’t grow up climbing and jumping and falling and fighting and tackling and being tackled, but if she was able to keep her act together despite some seriously damaging conditions, then why can’t I?

I may have led the kind of life that’s laid the groundwork for some serious cognitive degeneration as I continue to age, but by God, if there’s a way I can avoid going down the long dark tunnel to diaper-clad dementia and the total loss of everything I hold dear that makes me actually human, then I’m all in.

So, here’s my plan:

• Stay positive (no matter what) – no matter how dismal things may seem, life has a funny way of turning around, sometime or another.
• Introduce structure and order to my life – make sure I plan my days, and then stick with the plan (like they tell me in the Give Back Orlando material)
• Cultivate more discipline to maintain that structure – because the stuff won’t get done by just listing it on a page
• Do what I can to surround myself with like-minded people – friends are important, and I haven’t done enough over the years to cultivate those connections. I know this should change, and so I’ll do that.
• Journal, journal, and journal some more – It worked for Jefferson, Edision, Faraday, Isaac Newton, and Einstein, and it can work for me.

The great thing about journaling, from where I’m sitting, is that it enables me to do all of the above items. It lets me work on my attitude, tweak my outlook, and get in touch with what is holding me back. It helps me introduce structure to my life, not only by committing to do it daily, but also by journaling in a way that is as much planning as it is reflection. I can use my journal to track my progress and develop my discipline — in ways that are appropriate to me. And it can help me work through the things that keep me from others. In my journal, I have a safe place where I can uncork at will, and no one is harmed. Too often, I have just said what I felt to people who either could not hear it, or who didn’t deserve to bear the brunt of my intensity. Using a journal lets me say what I need to say and vent, without the danger of harming others. That’s important. Especially for me. My past is littered not only with subconcussive head traumas, but also with tons of relationships that could not withstand the pressure of my outbursts and lack of control.

So, onward and upward. I have access to information about people who managed to overcome some pretty serious threats to their sanity and cognitive health. I have access to accounts of their lives and scientific investigations into what worked for them. I can avail myself of their teachings and lessons and use them to my benefit — so that I can live out my days in good health and soundness of mind. I have a plan, and I’m determined to stick with it.

All good.

Does blogging make me brilliant?

It’s quite possible…

I’ve been giving a lot of thought to what can be done to help myself not end up like football players described in Malcom Gladwell’s New Yorker piece on Football, Dog Fighting and Brain Damage. I must admit, it wasn’t the best idea to read that story before going to bed last night. It kept me up, actually, which wasn’t good.

Anyway, it’s Saturday, so I can always sleep later to make up the time. And there’s something about drifting in that in-between place, that gets my mind turning in different directions for the answers it craves.

A few years ago, I heard about The Nun Study (by the Universities of Minnesota and Kentucky) which followed an order of nuns in Mankato, MN, who lived longer — and better — than was typical of the average population. They found some interesting things in their study — including the fact that some of the sisters’ brains (after they had passed on and their brains were donated and studied) were chock full of signs of Alzheimers. Yet, they had exhibited none of the symptoms we associate with the degenerative disorder.

In The Magnificent Minnesota Nun Brains Ken Korczak writes:

Most of the Sisters of Notre Dame stay vital and active well into their 90s. There are almost no symptoms that are typical of age-related brain disorders, such as senile dementia, strokes and Alzheimer’s Disease.

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

. . .

After examining and dissecting dozens of brains, scientists have come to several conclusions. Interestingly, the secret to the long lives and clear minds of these nuns may be attributed to a couple of simple things.

After looking at dozens of different variables, researchers discovered that the Sisters of Nortre Dame all did one thing that the majority other people do not do — they kept a daily personal journal recording their deepest thoughts, emotions, impressions and ideas.

Also, the Sisters Of Nortre Dame condemn “mental idleness” as sin. They did not allow themselves the frills of mental down time. Most of the Sisters have college degrees and some graduate degrees. They also play a lot of brain teaser games, solve puzzles and engage in rigorous debates at weekly seminars.

Keeping a rigorous daily journal is also required by the Order, and is considered as important as daily prayer, work and devotion to their primary vocation, the education of children. The Sisters believe in thorough, critical self examination.

The journaling aspect of the nuns intrigued scientists so much, some went looking for independent confirmation that daily journaling or diary keeping may be the secret to defeating the brain diseases of old age, and longer life.

Well, they not only found confirmation, but some scientists determined that frequent journaling may be a sure way to raise the IQ of any person, and may even springboard some people to genius level.

. . . (more here)

… researchers pointed to many other facets of their lives which may have contributed to their longevity:

• They belonged to a religious order and prayed daily. Recent independent studies have suggested that people who go to church or belong to any kind of religion, tend to live longer and be happier than those who do not.

• They felt comfortable in the fact that they “belonged” to a supportive group of like-minded human beings. This longevity factor has also been noticed in independent studies on peoples in Japan, Pakistan and Crete.

• They stay physically active as well as mentally active, not slowing down when reaching ages 70s through 100s.

• They actively cultivated positive attitudes.

• They lead selfless lives, and devote themselves to caring and giving to others.

• They rarely worried or fretted over material things such as money, mortgages, taxes and the like.

• They accept death as being a part of life. Funerals for the nuns are said to be almost occasions for joy among the Sisters.

Most of the above, I can relate to. I tend to substitute “spirituality” for religion, but the concept of being part of an organized, regularly scheduled spiritual practice strikes me as being very beneficial. And different people have different definitions of religion and spirituality, so I would imagine that avid readers who are passionate and disciplined about their reading could substitute weekly book club meetings for church. I don’t mean to be sacreligious. Different people just relate spiritually to different things, so those of us who are not regular church-goers shouldn’t be condemned to dementia by association.

Also the journaling aspect of things really caught my attention. Over the course of my life, I’ve kept journals regularly, even when they were full of gibberish and meant nothing to me later on. The simple fact of writing — in longhand — my thoughts and impressions and hopes and dreams and fears and frustrations, may have helped me overcome at least eight distinct head injuries, to the point where my life is unmarked by those injuries to the eyes of the outside world (my inside world is another story). Ultimately, for the sake of my own survival, what the outside world thinks is waaaay important. I can always address my internal issues on my own time and in my own way. But I do need to keep a job.

It’s interesting that I’m coming across this today. A few days back one of my neuropsychs was telling me that keeping voluminous journals is not the best use of time. They would like me to spend my time more fruitfully, making my  mark in the world. Well, sure, I would too, but it’s a good thing to read that keeping a lot of journals is not actually a waste of time.

Now I need to arrive at their office with this article in hand, and hopefully they will revise their opinion. If not, it’s of no consequence to me. I’ll keep writing, regardless.

Interesting — since my fall in 2004 (I’m coming up on my 5-year anniversary of the mild TBI from hell), I have not written much in longhand. It’s like, I just stopped. I told myself I didn’t have any use for my journals, anymore, but the fact was, I was having a hard time writing. I had suddenly become a bit dyslexic, after nearly 40 years of never having that problem. And I was having trouble focusing and concentrating long enough to get words on paper.

Now, it seems, I need to get back to that. Not only because it’s good for my brain, but also because I need to discipline and I need to exercise those parts of myself that are helped by writing in longhand:

• discipline (the ability to put words together in a meaningful way, as well as keeping myself on topic)
• impulse control (the ability to slow down and gather myself when I need to)
• eye-hand coordination (keeping my writing on the lines — or practicing writing on blank paper and keeping my writing in straight lines)
• focus (keeping my mind on the page in front of me)
• checking in with myself in a deliberate, measured way

Yes, the more I think about it, the more sense it makes for me to do this. Not so much for the old reasons — before, I thought I was helping myself realize truths about myself, when I was really wandering around in a fog, much of the time — as for the new ones I’ve listed above.

Also, my writing needs to change. It  needs a new focus. Not this old rambling, wandering, free-association stream of thoughts all the time (though sometimes that may be good to do), but a more focused, more deliberate kind of writing that doesn’t take me away from my life, but brings me into the midst of it.

And all the while, I am continuing to blog. Continuing to share what I’m finding. Continuing to reach out and relate what I’ve found to be useful — or not helpful — in this path of recovery, which is as much about just living my life, already, as it is about specifically addressing TBI-related weaknesses and problems. There’s a whole wide world out there, and there’s lots to talk about. Blogging gives me a chance to do it in a way that isn’t as insular and as esoteric as my own private journaling, and with any luck, it does others some good, too.

And if I do it often enough and with enough focus and discipline, it can help me think better and write better, which in turns helps me feel better about myself, focus on solutions rather than the endless stream of problems that follow me around like so many crying, swooping, begging seagulls following a fishing boat. I’m at the wheel of my own fishing boat, and I’m the one at the helm of my life. I can choose to pay attention to the gaggle of hangers-on and let them distract me from my activities, or I can pay attention to my boat and my nets, and haul in whatever catch I can get.

My choice.

Bottom line is, this writing activity of mine is actually a good use of time, and I need to value it. Even though it’s seemed like an exercise in futility (to myself and others), that belief has been based on incomplete information, and those beliefs can change. Beliefs can change, and so can behavior. I can “bump up” the activities I’ve followed “just for fun” — and practice them as regular parts of my active recovery from mild traumatic brain injury. I can use them as opportunities not only to heal from my recent damage, but also to ensure my long-term cognitive health and happiness.

Fact: I have sustained at least 8 (possibly more) mild (and some possibly moderate) traumatic brain injuries throughout the course of my adventurous life.

Fact: Plenty of people get hit on the head or sustain some other sort of brain damage or degeneration, and some of them live long and happy lives, devoid of any signs or symptoms of their hidden issues.

Fact: Some of those asymptomatic survivors do specific things that appear to help them. Studies have shown correlations between certain behaviors and choices and long-term cognitive health.

Fact: Those activities are things I can do, myself. They are not mysterious or beyond my reach. They include activities like faithfully keeping a daily journal, cultivating a positive attitude, and maintaining a disciplined way of life that is devoted to service to others. I can do them, too. In fact, I have been doing many of them for many years, and this may account for my tremendous success as a long-term multiple head injury survivor.

If the simple act of blogging about my own life doesn’t make me brilliant, alone, certainly learning from the blogs of others — and blogging in turn about it for others to read — can’t hurt.

Onward, upward. And outward. The world is waiting…

Putting it into pictures, getting on the good foot

It’s been a good weekend, thus far, and I had a great day yesterday.

I started out Saturday morning doing my usual bike ride. I rode 30 minutes, and then I lifted weights for about 10 minutes after. The weights I’m using are much less than I used to lift, and part of me feels deficient for having let myself get so out of shape. But the athlete I once was is still living in me, somewhere, and they know that any sort of progress needs to be made systematically and with good sense. There’s no point in wasting time on regret and self-recrimination. The point is to do what can be done, at that point in time, and do it in such a way that it serves as training for later, when I take on larger tasks, heavier weights, higher stakes activities.

While I was riding the bike, I thought through the day ahead of me. I got my trusty old clipboard with some scrap paper on it (so I wouldn’t feel too pressured to not make a mess while I was writing), and I wrote notes about what I wanted to do that day, as well as thoughts that came to me.

The first thought that came to me, was on the wings of an image I saw in a New York Times article about a young many who sustained a brain injury in a motorcycle accident. Adam Lepak, 19, who suffered a brain injury, is being led through a field by two friends of his. His story is pretty moving, especially considering the degree to which he was injured. He was in a coma for a while, which is a lot more than I can say for myself. It left me feeling both grateful and frustrated… and all the more determined to do something about my own situation.

Reading his story and having a visual of him just trying to walk across a meadow is really helping me. In particular, the passage about really working the brain has stayed with me:

No one knows what treatments or exercises will drive an injured brain to preserve or reconstruct a coherent identity — to pave its neural back roads. But neuroscientists generally agree that it can do so. The brain is “plastic,” recent research suggests; intact areas can recruit nearby, healthy brain tissue to bypass damage and compensate for lost function.

It does not seem to happen, however, without effort; to reroute signal traffic down back channels, the brain needs traffic, scientists say. It needs to be active, solving problems, meeting social expectations.

Reading the article about the progress this young man has made really lit a fire under me. What also lit a fire, was finding myself in a position, last week, to make a case for getting a promotion of sorts — changing the sort of work I do, from doing straight-ahead development/coding work (which I frankly have been struggling with, on and off, for the past five years, ever since my last injury), to more conceptual, higher-level abstraction- based work.

A new slot has opened up, with the arrival of a new uber-boss at work, and they are looking for someone who can get their head around the crazy-ass intricacies of the organization I work with, and identify ways to make sense of it. The opportunity is about as right up my alley and consistent with my “portfolio” of experiences at the company, as you can get, and I jumped at the chance to go after it. I talked to the uber-boss. I talked to my new boss, who is uber-boss’es underling. I talked to my former boss, who first suggested that I would be just the person to do the job, when the uber-boss started talking about how to get things in order.

In a way, this opportunity has a delightful fractality to it. Fractality, is when a pattern repeats itself at smaller and smaller dimensions, repeating the same patterns and qualities infinitely within the whole.

In this very fractal case, the organization I work in shares a lot of my own qualities. It’s wildly diversified, almost to the point of incoherence, it’s got a lot of varied passions and abilities and strengths and weaknesses, none of which take very well to being told what to do. The various individuals charge into any challenge with all their experience and ability and passion, and, like me, there’s a ton of all that in vastly diverse abundance to manage and deal with and figure out, in the process of doing even relatively simple things. Like me, the organization tends to get mired in details and my co-workers tend to get very worked up over seemingly little things that may or may not matter — or, for that matter, be true.

Which all makes for a very fertile opportunity for me. Because now I may have the chance to bring the same sort of order to my organization that I have brought to my own life. It’s wild, how this happens. And now the full force of my attention is on making sure I don’t screw up the opportunity and end up worse off than when I started.

There’s always that danger. Always.

At least my mission is clear, now. I need to get my act together — watertight and airtight and consistent — and keep my brain in the best working order of its life — and my life (which I suppose is one and the same). I need to up the ante and really focus on not only being normal, but being functionally precise, and not screwing up my chances at all this, by bad thinking processes and the residue of a past filled with screw-ups that had their logistical basis in fundamental neurological issues — issues which had nothing to do with my character, but were always interpreted as being due to some fundamental flaw in me, versus, the way my brain is wired together. All my life, as long as I can remember, I’ve hit snags along the way that were interpreted — by me and by others — as being due to fundamental flaws in my moral fiber. Only in the past couple of years, have I realized that the problem is not with my soul, but with my brain.

And now I have to re-train myself to think about my abilities and inclinations in terms of machinery. Wiring. Construction. Dendrites and neurons and synapses and axons. Not sin and soullessness. (Granted, there are plenty of sinners and soulless bastards running around out there, but I’ve counted myself among them for way too long, and it’s got to stop.)

Rewiring my own self-perceptions is taking some work. One day at a time, I’m getting myself accustomed to the idea that the problems I face are manageable and that I can — and will — overcome them with a combination of technique, tirelessness, tenacity, and as much finesse as I can muster.

So, I’m building myself some tools to do it. I’m drawing pictures of my situation. I’ve got an inventory of my strengths and relative weaknesses, from my neuropsych evaluation, which I have organized and ordered into graphics. I’ve broken down the different strengths I have and I’ve colored them green. I’ve broken down the different weakenesses and difficulties I have, and I’ve colored them red and orange, respectively. And I’m drawing lines between the strengths and weaknesses, identifying which strengths I can use to address which weaknesses, and giving myself visual reminders of where I’m strongest, and how I can apply those strengths to my difficulties and weaknesses.

It’s taking me some time, and the process I’m following tends to change and vary, between each “session” I spend with myself, figuring out where I have issues, and figuring out where I can apply my strengths. I spend a fair amount of time focusing on my difficulties, which can be a bit demoralizing, if I don’t put the emphasis on the solution, versus the problem. But when I keep my focus on the positives, I can “map” my strengths to my challenges in a way that keeps me on the good foot.

And that’s huge.

One of the things I’ve noticed about myself, is that if I let one or both of two things happen too often, I spin out of control and things start to head downhill:

1. Letting myself get too tired
2. Not self-assessing and tracking my issues on a regular basis

I’ve been handling No. 1 pretty aggressively, lately, with mixed success. But No. 2 has been a sticking point for me, as I’ve gotten pulled in a thousand different directions by upsurges in energy combined with lack of discipline, and I’ve stopped tracking my issues, for all intents and purposes, for the past couple of months. I guess I haven’t wanted to pay close attention to my issues, because I’m sick and tired of feeling defective, and I tend to run out of ideas for how to handle things better.

But now that’s got to change, as I’m finding it incresasingly difficult to effectively manage my life if I don’t address my issues, as they come up, and the stakes are all the higher for how well I manage my life. If I’m going to get this job, I’ve got to figure out how to sort things out on the inside of my head in a productive and positive way — and not let reluctance to face my issues keep me from making progress.

So, the painted carousel horse that is my issues tracking and management has once again circled around. It’s time for me to hop back on. I can’t avoid dealing with my stuff, if I’m going to operate at a high level. I’ve got to buck up, face facts, deal with my situation, and figure out pro-active ways of overcoming what gets in my way. I’m sure my neuropsych is going to be eager to help me do this. I just have to figure out the right way to approach this, and come up with a strategy and a plan for getting on track and keeping myself there.

Because it must be done

I’ve recently come across a blog I really like – Absolute Twisted Zero – apparently it is a fictional blog following the daily endeavors of a TBI survivor. I’m not sure if the writer has actually sustained a TBI… the language is quite fluid and the thought processes are pretty advanced, IMHO… but that’s not to say they couldn’t be a TBI survivor, all the same. There’s nothing to say we’re not able to by utterly lyrical in our expression, when our brains have been modified by injuries.

Perhaps they are masking their identity because they are a survivor, and they don’t want anyone to find out. Perhaps they are exploring this through fiction, because personal memoir is just too… close… for them.

I can certainly understand why they’d choose fiction, rather than memoir. I’ve often considered doing it, myself, but alas, I am not able to sustain interest in writing fiction on an ongoing basis. And turning my real experiences into different sorts of accounts takes more energy than I can muster.

For me, memoir is the way to go. It’s just so much simpler, easier, and to-the-point for me.

Oh, back to my feelings about Absolute Twisted Zero — One of the things I really love about it, is the emphasis it places on physical activity, physical fitness. Setting goals and reaching for them. Doing the work. Having a plan. Sticking to the program. And being a warrior. It really rings true for me, and in another space and time, it could very easily be the kind of thing I’d write, myself. But I am here, writing as Broken Brilliant, so I will leave them to fill in their corner of our world.

Reading ATZ, I am reminded, yet again, of how necessary it is to work. I am reminded that nothing worthwhile comes without some level of effort, and that the life I wish to (re)build is well worth the effort. I may stumble, I may fall, I may crash and burn… but I always get up again, sooner or later. ATZ helps me get up sooner when I stumble… and just get on with it.

It helps me get off my pity-pot and just do what needs to be done. Make the lists. Use the tools. Keep the focus. Stay grateful for what good I can enjoy, and stay mindful of the progress I’ve made. Eyes on the prize, the prize being more than “normalcy” — it’s the development of these new aspects of myself I’m finding, to either supplement or take the place of the aspects of myself that have fallen away since my last accident… as well as realizing the unique talents and abilities I’ve developed over the years, to compensate for the loss of abilities that are common to most folks.

So, I have issues with my memory… keeping on track… getting started… and I have pain. What of it? There is more — much more — more than I can list here — that I could feel depressed and assailed about, but what would be the point? The only person that would hurt, is me. After all, the rest of the world is busy with itself. What does it care, if I’m having a tough time? It doesn’t. Not because it’s cruel and cold, but because there is just too much going on in the world, for it to pay attention to every person’s list of issues and aches and problems and pains.

And given that so many people are keen on informing the rest of the world about their issues and aches and problems and pains, if one less person chimes in, well, that’s actually a favor I’d be paying to the universe.

So, thank you, Absolute Twisted Zero, for getting me off my butt and raising this work we do to a new level. The prose is moving, the writing is poetic, and it both keeps me honest and inspired.

Kudos.

… the winding milestones of my identity exoskeleton unraveling…

Absolute Twisted Zero has a really beautiful post out there – Seeds of Change…

“…

Look closely. You see the winding milestones of my identity exoskeleton unraveling. Rituals hold me together while identity reconstruction is underway. Identity helps organize my Human Animal social behavior. Healthy routines replace some rituals. I change slowly with multi-sensory training.

Around the edges is a lot of light. I am growing out from the rituals of the Cult of One. A Book of Rituals is not Identity. A Cult of One breeds anti-social behaviors. I am a molting Human Animal.

Wrapped round the trauma of my brain injury is a tourniquet of panic. I found no identity repair manuals. I have lots of self-help books with no section on identity reconstruction for people like me. I am not eligible for identity transplant benefits.

…”

Read the whole post here…

Yes, I’m back…

Well, that was interesting…

I stepped away from regular posting for a little while, thinking that I was going to make a change (a number of changes, actually) in how and when I write, how and when I post, and what I write and post about. My motivation was the intent to err on the side of caution, as I was starting to feel, well, exposed by all these posts. I’ve shared a lot of personal information here, and frankly, it started to spook me out a bit. It’s always been my intention to speak fairly personally here, to share details about my life that might be considered “intimate” by some, but to just let it all hang out, because when it comes to personal health issues, especially TBI, there aren’t a lot of sources that speak directly to us as human beings, and put a real face on our experiences.

All too often (especially given the state of healthcare in the US at this time), we are assigned patient IDs, given little plastic cards with our numbers on them, added to hospital and clinic databases, issued either a prescription for pills or told to ‘get more exercise’ and more actively control our stress. That’s if we get any help at all. Lots and lots of us never get the help we need when we need it – or if we get it, it’s not till much, much later, after considerable damage has been done. And we’re left to struggle along, muddle through, and generally find our way by trial and error.

It’s been my hope that this blog would help alleviate some of that. Give people a bit of hope. Offer my own experiences as a resource for others who don’t know where to turn. It hasn’t been perfect, by any stretch. But as of today, I’ve had 35,928 different page views. Not bad, for about 18 months of work.

And when I announced that I was going to be shifting my focus (I wasn’t really specific), I did hear from some folks about how they wished I wouldn’t go away and quit keeping this blog. It gave me pause. And over coffee this morning, I decided, “Oh, what the hell — I’m come this far, why pull out now?”

Interestingly, a lot of the page views are for posts I wrote many months ago, so the content has value for people (apparently) beyond the immediate moment when I write it. That’s one of my goals — to have “evergreen” material here that people can find useful, even if they are stumbling across the info many months after I first wrote it. These issues of ours are, unfortunately, very tenacious, and they don’t go away.  So, as long as I’m not a complete and total narcissist about this, and do it just for ego-casting, it makes sense for me to continue.

So, given that I believe in this work, and others have told me it’s needed, I’ve decided to restore my past posts for folks who are looking for info on dealing with mild TBI or PTSD. It’s pretty important work, whether or not I’m doing it. And I realized over the past days of not doing it, how much I love it. It’s not just about me and my life — it’s about chronicling human experience and finding workable solutions to tenacious problems, to share with others.

I do love the work, so yes, I’m back.

Now, I need to tell you why I pulled away so abruptly in the first place.

There are several reasons, which are actually closely related — and everyone who does health research and posting online needs to think about this very carefully. Please pay attention to this, as it may pertain to you, as well.

First, there are basic survival issues at stake.

I’m in a position where I may need to look for a new job in another three months or so. My COBRA-supported health insurance stops being subsidized at the end of this year, which means my health insurance costs are going to more than triple.  I have been offered lower cost coverage, but it doesn’t provide ample coverage for me, and I cannot, under any circumstances, get lousy health insurance, if I’m going to continue to see my neuropsych and psychotherapist.

The job I am in now, which is just a contract, may not pay me the money I need to keep going, so that means, I need to do some hard thinking about what work I do for a living. I have been needing to branch out from what I’ve been doing, for the past 15 years, and see where else my technical skills can take me. I need to update my skillset and expand my resume and portfolio, and that takes time. It takes time to keep this blog. I have regularly spent the first hour or two of most days in the week posting here, and that is time I could be spending on developing my skills.

I have a hell of a time keeping focused and sharp. I only have so many resources, and I only have so much energy. I need to feed my family and keep a roof over our heads, and I have to take my professional performance to the next level. That means something may have to give, and until this morning, I was convinced it was this blog. I only have time for really essential things, these days — given how much longer it takes me to read and comprehend and learn and keep my act together (compared to how I was before I fell in 2004), I have to carefully pick and choose what I do, and save my best energy for my most lucrative and financially beneficial activities.

More on this later…

The second reason I decided to give up this blog, was because of privacy issues and my concerns over this information working against me in this job market.

Let’s face it, traumatic brain injury is not the sort of thing that most employers embrace wholeheartedly. It’s highly stigmatized and people just do not understand it. It’s one thing, if you’re a veteran returning from the front lines of the War On Terror, and you come back after having been head-injured in a roadside IED blast while safeguarding our freedom. That’s something that (many) people can see as worthy of respect and consideration. People support troops. They have compassion for victims of insurgent attacks — Important Note: Please don’t think I am making light of combat TBI, or assuming that every returning soldier gets the full compassion and cooperation from the normal world upon their return. I only wish it were so. — But a traumatic brain injury sustained in a car accident or a fall down some stairs or having something fall on your head is harder to explain as the serious issue it can be — especially when popular culture (including Pepsi during the Super Bowl) makes light of head injury and promotes the perception that you can just shake it off, say “I’m OK — I’m good” and everything is hunky dory.

Even if people do understand that TBI (mild, moderate, or severe) can cause tremendous difficulties at the start, plenty of folks are of the belief that things should just sort themselves out over time. Indeed, many neurologists believe just that — including one I had the misfortune to visit when I was just starting out on this serious diagnostic/rehab quest of mine.

Now, given the types of information I have posted here, and given the breadth and depth of my own issues which I have willingly and eagerly chronicled here, I am admittedly putting myself in a very vulnerable position. No joke. Every so often, news comes out of some blogger being “outed” by their hosting service, because they’ve said something that pissed off someone with a vested interest in what they were discussing. And that blogger — like Valerie Plame — is exposed and banished from their position and/or blog. Recently, a Scottish policeman who blogged very candidly about his work, was exposed and dismissed from his job, and down came the blog. Which was a loss for everyone, especially him.

I have no interest in repeating his performance. I want to speak freely and do my part to support others, but at what potential cost? I’ve got to keep the money coming in. I have a grown-up life in the grown-up world, and I have a family to support. Thinking about the possibility of being fingered and stigmatized by what folks read here spooked me pretty badly, so I decided to back off the posting.

Third, all this personal health/medical information floating around online might not be such a great idea.

I mean, seriously. This whole “Health 2.0 — community-driven health research and open-source information sharing” strikes me as possibly the worst idea to come along since, oh, the collusion of church and state. There are many health information sites and communities which give people the chance to post personal information about their health concerns as well as engage in discussions with others. Some of the conditions are serious, some of them are relatively benign. But they are all personal. And lots and lots of people are not very careful about hiding their identities when they post to them. In my visits to various Health 2.0 sites, I see a lot of people using their real names, talking about their real conditions, and I wonder if they realize their information is visible to as many people as it is — including potential employers and insurers… not to mention the government.

Now, I am not a conspiracy theorist, and I’m not the kind of person who thinks the government is out to get us all, in some Matrix-movie-type of blue-pill-induced power grab, where everyone is walking around like zombies, feeding the machine unwittingly with their vital life force. I think real life is a lot more complicated than that. But I do believe that if unscrupulous individuals and organizations have free access to lots of personal information, they have plenty of opportunity to do unscrupulous things with that data.  It’s not a question of the right people having access to the right information (like members of a forum or online community) or the wrong people having access to the wrong information (like private investigators trying to dig up dirt on genuinely injured people who the insurance company doesn’t want to cover). It’s a question of all the information being accessible to any people who care to get at it.

And believe you me, people who really want to get to it, will. It’s not that hard — either they can do it by trickery (like in phishing emails from Big Banks that have links to them pointing to some .ru website that looks really official), or they can do it by hackery. I’m not paranoid. I’m just a highly experienced information technology veteran who has been active in a highly regulated and highly sensitive sector for quite some time. Wait — maybe I am paranoid Can you blame me?

Anyway, the thought that my own personal information is floating around out there — albeit in an anonymous fashion — sorta kinda spooked me, so I yanked it in a hurry, one frantic afternoon. I hadn’t been sleeping well, I was in a lot of pain, and I was contemplating the prospect of a potential employer finding out all about me and saying, “Why the hell would I hire some washed-up, brain-damaged has-been who runs around telling everyone how much difficulty they have doing basic stuff? Where’s the ROI on that?” In my mind, my whole way of life was seriously threatened, and I had to do somethign to take the pressure off.

So, I disappeared. And I thought it would make me feel better.

But, as you can see, it didn’t. I felt like I’d abandoned my post. I felt like I’d deserted those  who trusted me, and I felt like a total loser.

So, I turned around and came back. And here I am.

I am still a bit uncomfortable with being this vulnerable, but it’s the only way that really works for me. The truth is not a simple thing, and the full range of human experience is not a cut-and-dried, clean and tidy topic. It’s messy. It’s inconvenient. It’s exposing. It’s vulnerable. And at its very best, when it’s done properly and honestly, it turns us all into deeply fragile creatures whose lives literally hang by a thread at times.

Le’ts be honest, people. The very fact that a lot of us are alive is proof of miracles. The fact that any of us emerges from the womb with 10 fingers and 10 toes and all our organs intact, is nothing less than amazing. The very fact that countless people, over the course of human history, have been terribly, terribly injured — both within and without — and yet have survived, or even thrived, is further proof that we frankly don’t know shit about how everything is put together, and trying to come up with pat answers or reduce the deepest mysteries of the human spirit to reproducible, mechanized formulas is an exercise in futility.

Certainly, we will never stop trying to decode life’s intricacies, but deep down inside, we all have to admit that there’s way too much mystery surrounding us, for any of our arbitrary rules to apply for long.

So, that being said, I’m going to reverse my former position and venture back out into the light of day with this blog. I am still very concerned by the Health 2.0 movement to get everyone to put their health information online. Google Health, and other publicly available patient records management programs, scare the living daylights out of me. And the fact that people are embracing this innately non-secure, non-private, non-controllable new trend — which can have personally devastating consequences for individuals whose privacy is compromised — worries me deeply.

But I’m still going to keep blogging. I’m still going to keep talking.  Above all, I’m not going to stop believing that the power of the mind and the human spirit can — and do — work together to triumph over the injuries of the brain.

A new focus for this blog

I’ve been keeping this blog for about a year and a half, posting pretty frequently, and getting a lot of visitors — over 35,000 readers, total.

Lately, I’ve been dealing with some sticky medical issues that have baffled and confounded me for years, and that I haven’t yet been able to solve, medically. I had a pretty amazing turn of events yesterday, when someone finally said, “It doesn’t sound like _________. That just isn’t consistent with what I’ve seen.  It sounds a lot more like ____________.”

In the space of an hour, I went from possibly having a serious, potentially life-threatening condition that people had been thinking I had, to probably having a less serious and not-life-threatening condition that people had wondered about, but nobody had followed-up on. This, at last, because a highly qualified, personally invested professional actually took the time to talk to me and listen to me for more than 20 minutes… and had taken the time to actually get to know me and my life history (not just my medical records), and used their head, rather than some generic algorithm that is designed for multiple scenarios.

The process has actually been longer than the hour we spent yesterday. We’ve actually been in contact for about a year. And that’s how long it took for me to develop a relationship with a care provider and health advisor who could actually help me.

This is good. It took forever, but it’s worth the wait.

Now I can get on with learning about this other thing I’ve got going on with me.

That being said, I’m going to be shifting the focus of this blog away from myself. A lot of people have visited and read and commented, and I appreciate the feedback. But life is waiting for me to live it, and I just don’t have the time, anymore, to keep up with posting here. I haven’t been all that keen about the quality of my posts, anyway…

The thing about social media is that you have to be consistently social, and if you’re not, you might as well not even bother. So I’m saving us all the trouble of humoring my inconsistencies, and I’m stepping way.

Who knows what the future will bring for this blog? I have learned a lot, but it’s time to shift my focus towards other things. Like living my life. And doing more writing that’s got more depth and substance to it. It could be that I come back, now and then. But then again, I may not.

Only time will tell…