A good sturdy kick in the behind

Every now and then, I need a good strong boot in the butt. Not a gentle reminder, not a tender prompt, but a real impact that stings at the start, but ultimately turns out to be the lesson I needed — a lesson that I either “get” and live my life better in the aftermath… or if I don’t get it, I sink like a rock.

I have fortunately had the good sense to go back to reading the Give Back Orlando materials on Self-Therapy for Head Injury – Teaching Yourself to Prevent Head-Injured Moments. I had told my diagnostic neuropsych about the materials, and they said they thought it’s “good science” and is consistent with what both of us believe — that just because you’ve had a head injury does not mean you have to settle for a marginal life limited by your issues. There are things you can do to offset or compensate for or heal the issues you’ve got. A head injury does not have to be the end of the story.

And after I told my neuropsych about the material, it reminded me that I have not gone back to it lately, and I have not in fact read the whole way through the material. It was embarrassing to admit it, but I’m going to put that embarrassment to good use, and remedy the situation.

I have not been nearly enough focused on my recovery, of late. I have not made it a priority. And, in fact, after reading the section on priorities: CHAPTER TWENTY-SIX: SETTING MY PRIORITIES in the Advanced Section, I realized that I need to do something about this. I’ve still got a long way to go to make this somewhat leaky boat of my life seaworthy again. I have made tremendous progress, over the past years — especially since my fall in 2004 — and especially in the past 6-8 months. But I still have a long way to go, to keep the screwed-up automatic responses of my “alternative” brain from messing up my life.

I have a lifetime of bad habits that came out of injuries to address. I may not fix them all, and I may never even discover them all, but by God, I’m going to at least take a shot at doing the best I can to overcome them, turn my thinking around, and live the life I know I’m meant to live.

There is a lot at stake with me. Personally and professionally. I’ve started a new job, which is a gateway to better paying work that suits me better than the production-type work I’ve done for the past 20 years. I’ve become very good at following instructions from other people, and I excel at doing what I’m told. That’s come from a lifetime of hard work and deliberate refinement. My ability to follow explicit directions has been a reliable meal-ticket. It’s bought me a house and two cars and made me far more functional that someone with my history of head injury “should” be.

But now I need to bump it up a notch and see where else my abilities can take me. I have considerable capabilities, in addition to my limitations. I have a raft of strengths that are just sitting around waiting to be used, while my relative weaknesses play havoc with my daily life. I spend so much time managing the cognitive-behavioral challenges I have, that I rarely get/take the time to focus on building my strengths.

And I have languished.  For over 40 years, I’ve settled for less than I was capable of having/doing/being, because of the corrosive effects of those invisible challenges. What a shame and a waste. I have let my talents and abilities sit on the back burner, while I’ve put out fires flashing up all around me. I have not focused fully on developing my strong suits, because the weakling aspects of my person have monopolized my attention to the point of distraction, dissipation, and inertia.

Good grief.

But I really can’t spend any more time, right now, bemoaning that. The time I spent worrying about what’s gone before, is time I don’t have to spend on thinking about what’s yet to come. And I need to think about the future. I have issues, I know that. I have had difficulties in the past. I know that, all too well.

I have spent the past year and a half examining the parts of my life that have gotten totally hosed — specifically by TBI. The whole point of doing this, is not to feel bad about it, to beat myself up, and back away from life. The point of doing this, has been to identify the things that need to be fixed, and then come up with a way of fixing them.

Or compensating for them.

Or avoiding the stuff that just can’t be fixed.

Now I have tools and support to address the issues I know I have. And that’s what I’ll do.

So, what needs fixing? This morning, I’m focused on my long-time bad habit of not following through on what I promise to do. For a lot of different reasons, I tend to commit to things, and then I don’t complete the things I say I’ll do. I get sidetracked. Distracted. Confused. And I back away from the job, going off to do something else, instead of buckling down and doing what I said I would.

It’s one thing, if I do this with myself — I’ve done it all my life, with countless personal projects planned and started and then never completed. But I’ve also done it with people beyond the confines of my head. Ever since I was a kid, failure to complete was a huge issue with me. And it’s dogged me into my adulthood.

And now that pattern needs to change.

So, I’m changing it. Deliberately. Intentionally. With real resolve and commitment.

One of the things I’ve been looking at, is why I lose the fire. Why do I start things so enthusiastically, and then lose my enthusiasm? There are a number of reasons, but the main one seems to be that in the midst of all the details, I lose sight of the Big Picture. I lose track of what I’m doing and why I’m doing it. I forget the whole purpose behind it. I forget the reasons I got excited to begin with. I lose track of where the details fit in terms of the overall project. And I get lost.

Then I walk away. I lose sight of my Priorities, which inform the Big Picture of my life.

From the GBO Material:

Summary: Good decisions are made in accord with your personal priorities.

The decisions you regret making are the ones that conflict with your priorities.

The head injury makes it easy to overlook them. By bringing your priority list up to date and using it actively to guide your decisions, you can take better control of your life and make sure that the decisions are guided by your needs.

The Issue: Planning depends on having a clear sense of what’s important to you. You can’t make decisions about what you are going to do, or how you are going to spend your money, or which opportunities you are going to take and which you are going to let go, unless you know what your priorities are. Knowing priorities is something an adult normally does automatically, but it doesn’t work automatically after a head injury. After a head injury, too many decisions are impulsive. They are made to pursue something that is interesting at the time, but without thinking about how the higher priorities will be impacted. For example, survivors get mad at the boss and blow him off, losing the job. Only later do they realize how important the job was to them. If they had only thought about their priorities at the time, they might still have that job.

Yes, too many of my decisions are impulsive. I don’t hold myself firmly enough to a set plan of action. I make my notes and plan my activities, but then I get pulled off in all sorts of different directions by distractions and entertaining sidelines. I start out researching something necessary, then I get intrigued by an experiment I want to try, and I get sucked into that for hours. Eventually, I resurface and realize I’m so far behind, I’ll never get the important things done that needed to be done that day.

And I get down on myself, feel bad, beat myself up, tell myself, “You did it again…” and that takes a toll on what little self-confidence I started with. Slowly but surely, one small failure after another has chipped away at my self-confidence, undermining my belief that I can get things done. Bit by bit, I’ve allowed this to erode my sense of capability… it’s a wonder I ever start anything.

But I do start. I start again. Day after day, week after week, month after month, year after year. I start again. I take another shot. I don’t give up. For whatever reason. There is still a part of me that hopes, still a part of me that’s willing to try. I’m not sure why or how, but that’s not for me to question.

The missing piece is not the starting of things. It’s the continuing. It’s the completing. Tying up loose ends is the temperamental problem-child of my productivity repertoire.

Now, I’ve started again — this time with a new job. And this time I really don’t want to make the same mistakes I’ve made in other places. This time, I need to complete. I need to continue until I complete. I need to clearly and succinctly identify what needs to be done, and I need to do it. This is not optional. This is essential. It’s not up for discussion. I absolutely positively need to make sure I follow up on what I say I’m going to do it, and come hell or high water, by God, I have to get the job done.

That means controlling my impulses. That means mastering my distractions. That means keeping the Big Picture in mind and not losing sight of my promises. That means re-prioritizing my life — clarifying my priorities, to begin with. It means reminding myself daily of what I want, what I need, and what I have to do to get where I’m going.

I am by nature a very disciplined person. I have principles, and I have good intentions, and all I really want to do with my life is help others and reduce the quotient of human suffering in the world. The problem is not with me and my character. The problem is with how my brain works, and how it works against me.

That being said, I’m putting together my toolbox for dealing with all this … complexity

Again, from GBO:

The whole process of thinking about priorities has to be different after a head injury. Before, you probably automatically threw out unrealistic goals. Now you automatically accept unrealistic goals, and you can be realistic only by carefully looking at each goal and judging whether it will work or not. For example, a patient who was highly successful in going to college, getting top grades, and planning a career, was totally unsuccessful in setting goals for romantic relationships. He wanted a really hot, young woman, while he was now middle-aged, physically disabled, and relatively poor. He had gone without a date for 12 years because the women he met who matched up with his priorities would not date him, and the ones who would date him did not match his priorities.

If your priorities are unrealistic (especially if they are based on what your old self could do), then your life will be an exercise in frustration and failure. The only way to lead a successful life is to make sure that you ask yourself to do only those things you are really capable of doing. I cannot begin to properly explain how hard this is to do. It takes even the best recovered people years to reset their priorities so that they are truly realistic. To get there, you need to think about it often, and work on it regularly. But the reward for getting your priorities straight is sweet: Your life begins to make sense again.

Even after you have adjusted your priorities, it doesn’t guarantee that you will use them. Every time you make an important decision, your priorities control your decision process only after you make yourself stop and think about them.  . . .

I need to develop realistic goals. The type of goals that take into consideration not only the abilities I have, but how much time in the day I have. I need to let go of unrealistic expectations and goals and focus on the ones that make sense for me.

That means doing things like jettisoning a lot of the little projects I have sitting around in the wings. If they don’t immediately serve my Overall Goal of paying my mortgage and all my other bills, they have to go away. If they don’t serve my Important Goal of keeping my job and doing well professionally, then they have to go away. If they just serve to distract me from my discomfort, like a recreational drug of some kind, then I have to live my life without them. I don’t drink and smoke. Why would I dissipate my energies and wear myself out on little projects that serve no purpose other than to pass the time and get my mind off my troubles?

Focus… Focus in… That’s what I’m about, now. It’s what I have to be about. I can’t afford to screw around anymore. I’ve found work I love to do, that I can excel at, and now I need to make doing it a top priority. I realize more and more, each day, that my neurology mucks up my life in countless little ways that add up to big problems. And I need to make my ongoing recovery an even bigger priority. First things first. Figure out what matters. Ditch the rest. Be honest, be brutal, be effective, and in the process get my life back to a state that actually makes sense to me.

Onward.

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

Crossing the river(s) when the bridge is washed out

I’ve been thinking a lot about how my brain developed over the course of my life, wondering if/how my early mtbi’s affected me.

I have to say, it’s a bit confounding. It’s hard to see where the differences between me and everybody else are just regular personality differences, and which ones could be related to my falls and accidents and the assault when I was eight. I’ve actually remembered more incidents, over the past few months, most notably an incident when I was in daycare as (I believe) a 4-year-old.

I don’t remember much — just climbing up some stairs when some of the older kids encouraged me to come play… then running and jumping a lot… and then lying on the ground, looking up at an older kid looking down at me… and one of the other kids running downstairs to tell the lady who watched us all that something was wrong… the lady coming at me, looming over me, checking me over… yelling at the big kids… lots and lots of yelling. I’m not sure if my parents ever found out that something happened, but I remember trying to get upstairs a few more times, but the lady who ran the place wouldn’t let me, which really made me mad! It was fun playing with the big kids. I didn’t want to be stuck downstairs with the “little peepies”. I wanted to run around and play with the big kids.

I think that I may have been kept downstairs because I was small for my age. A couple of my younger siblings were actually bigger than me, till I was about 12 years old and I started to grow. I was a little kid, so I think the lady who kept me probably told me to stay downstairs so I would be safe.

Clearly, that didn’t work. If memory serves — and there’s the distinct possibility that it doesn’t. At least, in this case. I was reading a book, lately, about how the brain doesn’t always store the information it’s exposed to. It’s not like a tape recorder or digicam. It doesn’t just take in everything it’s shown. And sometimes it “records” things that never happened. So, I could be wrong about this — yet more fiction about my life…

But I’ve felt for a long, long time that something bad happened to me when I was little — in day care — and I always had this faint memory lurking in the back of my mind. It’s always just been there, I just never paid any attention to it. But then, the other week, all of a sudden, I got this big Wham! of a hit of the sequence of events. Like all of a sudden, they “clicked” with me, and I could see it all happening in front of me, like it was yesterday.

Hmmmm…

I also remember falling down the stairs more than once when I was a kid — one time in particular, I went down and slid the whole way down the carpeted stairs, banging my head on them, one at a time. Similar to my fall in 2004, which anniversary is coming up soon, but when I was little, I hit just about all the stairs on my way down. I can still remember the feeling of my head bouncing off the stairs — bang-bang-bang-bang-bang-bang-bang-bang-bang-bang — and the dull fog that enveloped me when I got to the bottom.

Man, oh, man…

Well, anyway, I know that I have a long history of head traumas — plenty of them subconcussive, as I was a very rambunctious kid with a lot of energy but not quite as much balance… I was always biting off more than I could chew, energy and coordination-wise. So, I fell down a lot, hit my head a lot, ran into things a lot. I got banged up, bounced back up, and got back in the game. I was game. Totally. Always up for more. Just try and hold me back…

Sometimes, people were able to, like the lady who watched me when I was little. But most of the time, they weren’t.

I showed them. I could do it. I’d be up and at ‘em in no time. Sure! I could do it!

Now, I’m dealing with the after-effects of my (sub)concussive childhood. And I’m wondering if the impacts over the years had a lot to do with how my brain developed. I have to say, although I have some complaints (who doesn’t, tho?) I’m pretty pleased with how flexible my thinking is, and how well I can perform, by and large. I tested very high in my neuropsych evaluation – high 90’s, percentile-wise. In my moments of self-satisfaction, I imagine I’m a genius or a savant of some kind. (Ha – yeah, right – when I figure out how to keep my study clean and get stuff done when I’m supposed to and make it to the train on time, then I’ll qualify). I have to say, though, I don’t have that many of those kinds of self-satisfied, self-congratulatory moments (I should be so lucky), so I try to savor the ones I have.

But anyway, back to the washed out bridge thing. I’ve heard head injury described as a shearing of fragile connections in the brain — the fine connectors get disconnected, sheared, frayed, and generally disrupted. Kind of like the frayed strings in my sweatpants when I was a kid and I wore my sweats to shreds. And the routes that normally connect the different parts of the brain end up having to re-route to find other ways to connect. And that’s where the fatigue comes from. And the constant restlessness. And the agitation. The brain has to work all the harder to do basic, regular stuff. It can do it, it just takes more effort. The ways that are usually used, the pathways that everybody else seems to have intact, don’t quite work the same for us.

So, we mtbi survivors have to find other ways to get down the neural pathways of our lives. We have to find other routes, when the highways and byways of our brains are washed out by the storms that take us by surprise. The traffic of our brains doesn’t stop — not as long as there is life in us. It just keeps coming and coming and going and going, and when it comes to a place in the road where a bridge used to be, or a paved portion is mising from a huge-ass virtual sinkhole that opened up under it, or there’s a huge fallen tree getting in the way, we — the traffic in our brains — have to find a different way of getting where we need to go.

And I think about all the times when I was a kid, feeling like I was so far behind, just struggling to keep up with what was going on around me, hassling and hassling and hassling over every little detail… all the while seeming to be fine, because I learned pretty early on to be stoic and not let on when I was having trouble — and anyway, I was a tough little kid who didn’t take shit from anyone — and I think about my brain and how hard it was working to put two and two together…

Man, I have to hand it to myself for not going crazy. Granted, I was a strange kid who went off on horrible tantrums, beat up on my siblings, and had all sorts of weird habits, like rubbing through the satin edge of my blanket because the feel of the satin between my fingers was the only thing that would calm me down enough at night to get to sleep… I won’t go into the hiding in dark corners and talking to myself for hours on end and tearing out clumps of my hair — that’s a tale for another time. But all that disturbance aside, I actually came out okay. And nobody I know seems to have noticed there was something really amiss with me.

Of course they didn’t. I learned a long time ago, to hide what goes in with me. In fact, it wasn’t until I realized I was several hundred thousand dollars poorer than I’d been three years before, and I couldn’t explain to myself exactly why or how or when that had happened, that I noticed there was something amiss with me.

Crazy.

Anyway, something must have worked, because here I am, relatively normal, as far as anyone else can tell, testing well, for the most part, in my evaluations, and able to hold down a job and advance my career. Maybe I’m just fooling myself and I’m in for a rude awakening, when I find out that I’m not nearly as competent as everyone else seems to think I am. Maybe I’ll crash and burn. Maybe I’ll self-destruct. I don’t plan to, and I don’t think I will, but you never know.

All I know is, all these years, whether because I’ve kept busy or just kept moving, I’ve been able to re-route my brain around lots of obstacles, and find other ways of getting where I need to go. I may have had all those falls and all those injuries, but if anyone is a testament to neuroplasticity, I am. I’m serious. All the crap that’s gone down in my life, and miraculously my brain has managed to adapt, grow, change, and not show up horribly deformed on my MRI or register more than slight abnormalities on my EEG. For all I’ve been through, for all the crap that’s been done to me, and the wrecks I’ve survived, I’m doing okay.

Even if the bridge is washed out in places, there’s plenty of territory to discover while I’m bushwhacking my way through the underbrush. And if I’ve learned anything from this life, it’s that if you just keep going and use your good sense and you don’t go out of your way to do genuinely stupid stuff, you can find your way back to a beaten path of some kind. It might not be the road you left, and it might not be the road you were looking for. But sometimes a detour is the best thing for us.

Just keep going.

Poor Memory + Anxiety = Too Much To Do

I had a revelation the other day… they just keep coming…

One of the reasons that I end up with too much on my plate is that I literally forget that I have things going on already.

That’s not a terrible thing, in and of itself, but when I get nervous and/or excited, I tend to seek out things to do, and if I forget that I already have a full plate and don’t keep in mind the things I need to get done, I take on more things that excite and enthuse me, but are completely new and different and have no bearing on what I’ve already got going on.

So, I pile up more and more things, forgetting that I already have more than enough to do, and I end up with a huge stack of stuff that needs to get done, but that cannot possibly all be taken care of in a timely manner.

That leads to overwhelm, which leads to ineffectiveness, which leads to discouragement, which leads to ever decreasing self-esteem… which makes it harder and harder for me to function properly, or feel good about myself when I do function properly. It’s hard to feel good about what you’ve accomplished, when you continue to have a massive backlog of crap that still needs to get done.

And I’m tired of not being able to enjoy my successes, because of my self-imposed “failures”.

Now, for years, I thought that the main reason I got into new projects before I finished the old ones was that the old ones simply bored me or didn’t hold my attention well enough, and I lost interest. But when I look more closely at the pattern of behavior, it’s not that I lose interest. I’m keenly interested in what I’m working on, at any given point in time. The things is, I literally forget what I’m supposed to be working on. I lose track of what steps to take, I don’t have all my materials in front of me, and I can’t remember what I’m supposed to do next.

I do have a lot going on, on any given day. And objectively looking at what I have happening, it’s actually quite exciting to me, on many levels. That’s why I get into these things — they interest me, and I love working towards and achieving my goals. And it’s so frustrating to me that I get so few of them accomplished, relatively speaking.

I could never seem to figure out how to keep myself consistently on track. I tried all manner of things to keep my interest engaged. But now I realize, it’s not my interest that fails me, it’s my memory. My mid-term memory for the in-between steps that are getting me to my ultimate goal. It’s not that I stop caring about what I’m doing; I stop remembering what’s next. It’s not boredom that’s getting in my way, after all. It’s forgetfulness.

Which is helpful to me and my understanding of the issues I face. All along, I thought that I was basically unable to sustain interest in what I’m working on. I thought there was something wrong with me, that I would start these really involved projects, and then drop them for no apparent reason. It’s happened to me, ever since I was a young kid. I would start exciting projects for school, or start a yard cleanup job for a neighbor, but then I would get distracted or get pulled away to some other activity, and I would never go back to the project I was working on before. It used to drive my parents and teachers and neighbors crazy. They just didn’t know what to make of me and my behavior.

They seemed to think I was stupid or lazy or I didn’t want to do the work. I can hardly blame them, when I would walk away from a job… forget to go back to it… then remember I was supposed to get paid and show up at their door, expecting payment for a job I never finished. How else could they have explained my inability to complete special school projects that I, myself, had designed and decided to do? I would get all enthused about something, then get swamped in the details, then go off and do something else to relax, then I would literally forget what I was originally supposed to be doing, and either nobody was there to help me remember, or the people around me would not realize I needed to be prompted, and they’d get angry with me for being lazy or contrary or undisciplined.

Ugh!

Well, anyway, now that I’ve got a clue about how my crappy memory has made my life miserable and ineffective, all these years, now I can do something about it.

I’ve put together a list of all the things I’ve started, but either forgot to complete or put off finishing. It comes to more than 50 items (I’m at 51 and still adding).  Some of these things are very important to do, and I’ve got to keep them in front of myself. Some are nice-to-have’s and I can let them wait. But there are some particular projects which I cannot afford to let drop — especially ones for work. I’ve got to cultivate better work habits and use some of my tools more aggressively to right this bad trend.

So here’s what I’m doing about it:

I’ve made a list of the most important, most vital things I need to do, and made notes about exactly why I want/need to do them. I have prioritized them and I am tracking them as I take care of them.

I copied my list onto a large stickie note and put it in my daily planner in easy view each day, where I see it each time I open my planner to the day I’m on. When I complete an item, I check it off, and I remind myself regularly that I am making progress, and how important it is, and how good it feels to do it.

I also plan to make a wallet card of the most important goals I have, so I can carry it with me and look at it frequently. The purpose of it is not just to remind myself of what I need to do, but also remember what I have accomplished, so I can move forward with confidence and self-regard.

It’s  a process, of course, but at least I’m getting somewhere. And at least I realize one of the root causes of my ineffectiveness over the years and I don’t have to beat myself up over it (quite as much) anymore.

It’s all good — and getting better!

I haven’t got time for the pain

I haven’t got need for the pain, either.

I confirmed something very important, this past week – if I do not exercise vigorously, first thing in the morning before I do anything else, I pay for it in pain.

For those who know what it is like to battle chronic pain on a daily, weekly, monthly, yearly basis, over the course of months, even years, you know what I mean, when I say, I will do anything in my power to keep this pain from taking over my life.

For those who are lucky enough to not have that experience, you can say instead, I will do anything in my power to keep [insert something you detest and despise] from taking over my life.

I happen to be one of the former types, plagued all my born days (at least, as far back as I can remember) with pain. Painful touch. Painful movement. Painful just about everything. The only times I have been pain-free have been in the extremes of human experience — when I am either so deeply engrossed in what I am doing that my focus blocks out any sensation at all… when I am pushing myself beyond my limits to see how far I can go… when I am so deeply relaxed and entranced that nothing of human experience can penetrate the divine aura that surrounds me.

In those extreme places, I am free of pain, I am more than myself, I am a piece of a very, very, very large puzzle that dwarfs discomfort with its vastness.

But one cannot always live in the extremes. I’m neither a cloistered monastic, nor a sheltered academic, nor a professional athlete, nor a maverick rock climber. I am a regular person with a regular life, and that life just happens to be fraught — at times — with almost constant pain.

Ask me if I have a headache on any given day, and my answer will not be “yes” or “no”, but “what kind of headache?” and “where precisely do you mean?” It’s a given, that my  head will hurt. And my body, too. It’s just a question of degrees.

At its worst, the pain is debilitating. 20 years ago, I had to stop working and drop out of life for about 5 years to get myself back on my feet. Over the decades since then, the pain has fluctuated, its impact on my life varying. The variation has been due, in no small part, to my mental determination to not let it stop me. In many cases, I refused to even acknowledge it, even though objectively I knew it was there. I went for years telling myself  I was pain-free, while at night I would be forced to stretch and press points up and down my legs and take plenty of Advil to get myself past the searing ache in my legs, hips, and back.

Denial is a funny thing — so useful, so essential, at times, and so easily used, even when facts to the contrary are obvious and intrusive.

Over the past several years, however, as I’ve become more and more cognizant of my TBI-related issues, pain has made itself known to me, and I have ceased to deny it. It’s a double-edged sword, that. Even if I don’t deny it and am determined to do something about it, my plans don’t always work, and I cannot always accomplish the level of pain control I would like.

In those moments when my honesty is far more than my ability to deal effectively with my discomfort, I curse my newfound determination to be upfront and frank about every little thing that is amiss with me. I have so many other issues to think about — do I need to add unstoppable, unmanageable, uncontrollable pain to the mix? Wouldn’t it make a whole lot more sense, to acknowledge and focus on issues I can actually fix?

But now that the lid is off Pandora’s box, there’s no sticking it back on. I have to address this pain situation, I have to do something about it. I cannot just sit around and boo-hoo. Nor can I run away from it and keep telling myself it’s not an issue. It is an issue. A very sticky, troubling, problematic one that holds me back, perhaps more than any other issue I have. It’s not just physical, it’s emotional and psychological, too. And it demands acknowledgement and work, to address it.

So, I do. I get up in the morning — like it or not — and I exercise. I roll my aching, complaining body out of bed, pull on my sweatshirt over my pajamas, slip my feet into my slippers, grab my clipboard and pen, and I haul my ass downstairs. I fill the kettle with water, put it on the stove, and turn the knob to 3 or 4, to give myself plenty of time to work out before the water boils. Then I pull the curtains in the room where the exercise bike is, so I can work out in private, put my clipboard on the magazine holder on the exercise bike, climb on, make a note of the time I started, and I begin to pedal.

I ride for at least 20 minutes — 15, if I’m really behind in my schedule — and I work up a sweat. I hate and resent the first 10 minues of every ride. It is boring. It is monotonous. It is sheer drudgery. But it is necessary. If I don’t exercise, move lymph through my veins (the milky white substance that moves toxins out of our systems doesn’t move on its own — it requires circulation to clear out the junk we put in), and oxygenate my brain.

After the first 10 minutes, my brain has started to wake up and is complaining less about the ride. About that time, I start to think of things I’m going to do for the day, and I start to make notes. I scribble on my clipboard, trying to control my handwriting well enough to read my notes later, and I make an effort to be careful and legible. On and off, I pick up my pace and push myself, working up a sweat and an oxygen debt that gets my lungs pumping. When I’m warmed up and getting into a groove, my mind wakes up even more, and I let it wander a bit — kind of like letting a squirrelly puppy off its lead when you take it for a walk in the park. I let my thoughts ramble, let my mind race here and there, and then like walking a puppy, I eventually call it back, focus once more on my day, and make more notes about what I need to accomplish.

When I’ve reached my 20-30 minute mark, I stop pedaling, get off the bike, and go check on my hot water. I turn up the heat, if it’s not already boiling, and stretch in the kitchen while the kettle starts to rumble. When the whistle goes, I make myself a cup of strong coffee, and while it’s cooling, I stretch some more. I drink a big glass of water as I stretch, feeling the muscles and tendons and fascia giving way to my insistence. I’m warmed up, after pedaling, so I can stretch more easily. I can move a lot better than when I got out of bed, and I’m actually starting to feel pretty good about doing this exercise thing, as soon as I get up.

Once I’ve stretched, I head back to the exercise room and lift my dumbbells. I work with 5 pound weights (for now), moving slowly and deliberately. I focus intently on my form — practicing my impulse control. I make sure my body is aligned properly and my motions are smooth and not stressing my joints and ligaments and tendons. There’s no point in exercising if I’m going to just injure myself. I do a full range of upper-body exercises, presses, curls, flys, extensions, pull-ups… all the different ways I can move my arms with my 5-lb dumbbells, I work into the third part of my routine. I take my time — deliberately, for discipline and focus and impulse control are big problems for me that really get in my way — and I work up a sweat as I hold certain positions and move far more slowly than I prefer.

When all is said and done, my legs are a little wobbly and my upper body is warm with exertion. I am sweating and a little out of breath, and my body is starting to work overtime to catch up with itself again.

By the time I’m done, my coffee has cooled enough to drink it, and I can make myself a bowl of cereal and cut up an apple to eat.  I sit down with my clipboard again, make more notes, review what I need to accomplish, and I get on with my day.

The days when I skimp on the effort and take it easy, are the days when I am in the most pain at the end of the day. The days when I really push myself with my weights, moving sloooooowly through the motions and keeping myself to a strict form, are the days when I have the most energy and am feeling the most fluid. The days when I don’t stretch very much, are the days I have trouble falling asleep at night. And the days when I do stretch are the ones when I am able to just crash into bed and am down like a log all night.

Two days, this past week, I did not do my workout full justice, and I paid dearly for it, the rest of both days. I learned my lesson. I haul myself out of bed, now, and I hold myself to a disciplined workout. Anything less gets me in trouble.

I’ve got enough trouble, without the pain on top of it. And if there is any way I can cut back on whatever complications I can, I’ll do what I can to do just that.

It’s hard to start, it can be tedious to do, and it often feels like an interruption to my morning, but without it, my day is toast. And I am lost at sea… floating in a brine of burning, searing agony that surely must have informed the medieval concept of eternal hellfire and brimstone.

And yet, something so simple can push back the waves, like Moses parted the Red Sea. Something so simple, so basic, so good for me. Salvation comes in strange packages, sometimes. But it’s salvation nonetheless, so I’ll take it.

After all, I’ve got much better things to do with my life than suffer needlessly.

Practice, practice, more practice

I’m feeling perky today. I didn’t get enough sleep last night, but I got up and rode the exercise bike, stretched a little, and then lifted my weights. I just do 5-lb dumbells, and I focus on my upper body, and it feels great. While I’m lifting, it feels like such a chore and a pain in the butt, and I can’t wait for it to be over.

But I use overcoming this reluctance as an exercise in impulse control and personal discipline, which I sorely need to re-develop. Before my last injury, I was a machine. I would go to the gym religiously and I was intensely disciplined about my health. After the accident in 2005, that just fell apart, and I’ve vowed to get it back. It’s paying off in a big way. I feel better about myself and my ability to be the person I know I am. And when all is said and done, I feel GREAT! Lots of good energy. Plus, I don’t need to drink all that coffee anymore, ’cause my day is off to a good start, and I’ve got plenty of juice to spare till much later in the day, than if I don’t exercise.

I’m really pleased with the training routine I’ve gotten into. And I’m expanding it into social areas as well. I plan my day and think about what I want to do with myself that day. Also, I practice my conversations with other people while I’m riding the bike, which helps get my mind off the monotony of the pedaling and keeps my brain occupied.

One of my secrets to continued improvement is that I’ve gotten into practicing my interactions with important people in my life — most notably my neuropsychologist and my therapist. Those working relationships are my lifelines, and I don’t want to screw them up, because I get so much out of them. I was very dissatisfied with how I was behaving around them — not very smooth, socially, getting lost and not remembering to talk about certain important things I had promised myself to bring up. I just wasn’t performing very well at all.

I knew I could do better. I wanted to do better. So, I started “running lines” with/about these people in private. I basically practice interacting with them when I’m by myself, so when I am with them in person, I can be more fluid and relaxed and not stress out with how poorly I’m performing. I make up conversations with them, rehearsing how I intend to interact with them later on.

My spouse has gotten used to hearing me do this — in the shower, while I’m washing dishes, while I’m working in the yard, while I’m by myself in my study. At first, they thought I was losing my mind – they were just jealous because the voices were talking to me , but when I told them what I was doing, and it was clear I was lucid and not completely delusional, they got used to the sound of my voice having an animated conversation with thin air.

I practice outside the home, too. That’s where a cell phone really comes in handy. If I know I need to speak at a meeting or have an important discussion with someone, I rehears it with my cell phone attached to my ear. Nobody knows I’m not talking to anyone. Nobody can tell. I’ve got my cell phone clamped to the side of my face, and I’m very animated, so surely there must be someone there. I often rehearse my life while I’m driving to and from work, too. I have these really interesting conversations with an imaginary person, and if people in other cars start giving me looks, I lift my cell phone, so it looks like I’m on speaker phone, and their curiosity is satisfied.

I’m sure it sounds a little bit insane, but the rehearsal is really paying off! I’m actually able to exchange information with the most important people in my life better than ever, and I’m much more interactive than I was just a few months ago. Each time I meet with someone I have virtually rehearsed with in person, I do a little better, and I’m actually starting to look (relatively) normal when I talk with them. At least, I think so. My neuropsychs have noticed a difference, too. At the very least, I’m not tearing up and twitching when I talk to my shrink anymore, which is good progress for me.  I friggin’ hate that affective lability stuff — that’s where your emotions are all over the place and you fall to pieces over absolutely nothing — it’s personally, mentally and emotionally debilitating. And it’s not like me at all.

I got the idea of practicing in advance after I came across the concept of “Stress Inoculation Training” about a year ago. It’s all about reducing the amount of stress in situations by experiencing them up front and acclimating yourself to circumstances that might cause you stress. Conversations with some people are very stressful to anticipate, so I had to come up with a way to deal with this, and stress inoculation training seemed like a good idea. I don’t have an exhaustive understanding of it, but I get enough of it to help myself.

Oh, and there’s the theater connection. I have hung out with theater people for years, and one person I know rehearses every single important conversation they’re going to have with a friend, relative or confidante. I thought for years that they were nuts… until I tried it myself in private and found out how well it works.

I must spend at least 5 hours a week, practicing for my various therapy sessions, and I’m really happy with how well it’s going. I’m actually able to show up and be myself. It sounds strange to me, to think I have to practice being myself — shouldn’t I just be able to do that? Other people can? But I think the stress just gets in my way, so I have to take other steps. And I do. It’s a thing of beauty, when it works, and it’s been working.

Now, not every conversation I have with them goes the way I want or expect it to, but practicing at least some sort of conversation with them enables me to feel more comfortable overall, which frees me up to ad-lib, which is turning out to be fun and productive. I tend to forget a lot that we talk about, but I’m doing better at remembering to take notes when it’s important.

The other nice thing is that the better I get at having these conversations with people outside my immediate circle, the better I get at having more reciprocal conversations with people who are close to me. I keep having these conversations with people that are many times longer and many times more involved than the typical exchanges I’ve had for more than 40 years. It’s quite remarkable that I was so impaired before, and I can’t quite believe I’ve gone this long with the basics of conversation never making much sense to me, but now I’m learning and figuring it out, so that’s very cool.

Expanding the idea, I’ve also been practicing going through the steps of doing tasks I keep messing up at work. I’ve been practicing talking to my new boss and new colleages. I’ve been practicing, practicing, practicing.

And it pays off.

Woo hoo.

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.

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.

Vacation’s over… thank heavens

Funny, how the seasons go…

For the past several years, I have been increasingly sedentary, not spending as much time outside in the summer, and then not in the winter. Now, I’ve been living in my current house for close to seven years, and the first couple of years, I was very active outside, in all seasons. In the winter, I was always out, working on the ice and snow that built up on my driveway… snowshoeing in the woods nearby… raking snow off my roof… and more. In the spring, I was out in my yards — front and back — working with the plantings there, making plans to put in a garden, getting to know the place, negotiating the vast amounts of mud that replaced the snow. In the summer, I was usually out mowing or working on some fixer-upper project… hiking in the woods, riding my bike, and generally being active. And in the fall, there was even more work to do, to get ready for the winter. Putting up firewood, raking all those leaves, weatherizing the house, getting the furnace cleaned and the snowblower serviced.

It was engaging, necessary work, and I loved my house — as I do now — so I was happy to do it all. It gave me something to talk about at work. It gave me something to keep me busy and active and healthy.

But then something changed. I stopped being as enthusiastic about taking care of things. I stopped being as engaged with the maintenance and the general work it takes to keep a place running. I stopped mowing religiously every other weekend. I stopped being as diligent about clearing leaves from the yard and snow from the driveway. I stopped going outside to work on the plantings, and I let things just grow up wildly in all directions. There were repairs that needed to be made, but I let them go. I just didn’t pay any attention to them. My mind seemed to always be somewhere else.

I couldn’t seem to muster the enthusiasm to do much of anything around the house, and the things that did get done — the painting, the snow removal, the cleaning — seemed like monumental efforts that usually involved some sort of emotional crisis, either before, during, or after.

And I hardly even noticed the change. It sounds strange to say, but the neglect and the ennui just sort of happened, and I barely noticed. In fact, it took a couple of years for me to even get a clue about how I’d just let things go. It took me some time to figure out that all the drama around doing what were once simple things, wasn’t actually the way it always was before. But something was different. I couldn’t feel it, but when I thought back about how things had been before, I knew — rationally — that there was no way I could have kept the house in good working order for the first few years, if I’d been this lax about everything.

And I couldn’t for the life of me figure out why I’d let everything go. It didn’t make sense. But until about a year ago, whenever I’d start to puzzle over the “why?” of my increased neglect and unusually sedentary way of life, I would get hung up on the confusion, and then give up before I could puzzle my way through to any sort of answer.

But when I think about it now — and for some reason, things have become clearer to me, over the past months — I realize that my neglect and ennui and abandonment of my “post” as the head steward of this house coincided with the fall I had in 2004, when I hit my head on those stairs.

Again, it’s really hard for me to get a sense of where and when and how it all changed. It seemed very subtle to me, and perhaps it seemed that way to others, but the snowball effect has become increasingly difficult to handle. I’m now at a point where the basement is full-up of all kinds of stuff that I just tossed there, we can’t use our attic, because of an invasion of flying squirrels, we can’t use one of our bathrooms because the leaks are too intense, and the tile is falling off the walls, and the other bathroom — the usable one with the shower — is in danger of falling apart, since the walls are very soft and spongey. The shower walls are literally being held together in places by thick lines of caulk.

This is not good. And I have to do something about it. I’m working on it, for sure — trying like crazy to get the money together to do the repairs

Looking back, I can see how, in 2005, the year after the fall, I became increasingly non-functional. I was having tremendous difficulties at work, things were really unraveling for me there, and I stopped going to the gym. I stopped being social, period. I did less and less hiking, I didn’t do much snowshoeing in the winter, and I didn’t mow as religiously as I had. Being a lot less social, I had fewer people to talk to about my life, and things that people used to remind me to do, by telling me about their activities, just fell by the wayside. I spent more and more time inside, writing in my journal, or trying to read or … what was I doing? I can’t quite remember what I was doing. I’ll have to go back and look at my notes.

I do know what I wasn’t doing, however — taking care of my house and my health.

It was like my brain went on vacation.

Interestingly, I find myself suddenly starting to re-emerge from that old fuzzy place. I’m not sure if it’s because of the new therapist I have who really holds my feet to the fire and forces me to account for myself and behave like a normal human being (my other therapist treated me like a poor victim of circumstances, which did not work for me, really). It may also be because of the neuropsych I’ve been working with who is really focused on problem-solving over the long term. It could be the exercise, which has helped me get my act together — perhaps better than any other thing I’ve done, or help I’ve received. It may also be because I’m pushing myself to do more, take on more responsibility, and really live up to my potential, rather than wandering around in a daze, aimlessly drifting from one activity to another without understanding what I was doing, or why. Or, it could be that my tracking activities are paying off, and I’m managing my own cognitive-behavioral health better as a result. I think it may be a combination of all of the above. That, and the fact that my spouse has a better idea about what it is I’m dealing with, as a multiple MTBI survivor, and they can not only cut me a little bit of slack, when I’m drifting or falling back, but they can also now support me better in getting on the right track again.

I think it’s a combination of all of the above, plus time. TBI  can take a while to sort itself out, and everyone is different. For me, it may have taken me five years to get myself back together to this level. I have a lot more progress to make, and every day, I learn something new about what I need to improve. It’s a constant process, and it’s a good one. And the better I do, the better I want to do.

So, it seems my brain is coming back from its vacation. I’m doing more around the house — I’ve actually been helping to clean, if you can imagine that. I’m doing more with myself that’s productive and focused. And I’m making excellent progress in my work. I’ve got a great new opportunity I really want to pursue, and I have to keep on my toes to do it — and myself — justice. This is really, truly big. It’s huge. It could mean the difference between competing with lower-priced professional peers for increasingly scarce work, and rising to a different professional level, entirely, where I can use more of my conceptual thinking strengths, and not be held back by my nitty-gritty detail-ridden complexity-mired weaknesses.

Onward and upward. It’s good to be back.