When things don’t turn out… as expected

sunset and clouds reflected in waterI can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.

A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.

Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.

And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.

Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.

When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.

Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.

We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.

My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.

When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.

So much for vacation.

There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.

We got  home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.

Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.

So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.

The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.

But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.

And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.

But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.

And take care of myself in the process. Because I still have a lot of life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.

And so I shall.

Whatever else happens.

Vacation time

road leading into the distance, with country landscape surrounding it
The road ahead is a lot more straightforward than the road behind me was

I actually get a few days off work, starting today. Well, starting at 11:00 today — I have a meeting at 10:30 that I have to lead. But then, I’m done.

It’s been a really challenging time, lately. Morale is terrible at work, and it’s like wading through thick, sticky mud, trying to get anything done. My own morale is not great, I have to say, but I keep on with my work, regardless.  For me, the real pleasure comes from actually being able to DO the work. 10 years ago, that wasn’t the case. I was pretty much of a series of accidents waiting to happen.

  • My short-term working memory was shot.
  • I couldn’t understand what people were saying to me.
  • My ability to plan and follow through was negligible.
  • My temper was short, and the recovery time was long.
  • My spouse was afraid of me.
  • I couldn’t seem to keep a job for more than 9 months at a time – and that was pushing it, for me.

It’s all very different now, thank heavens. I’ve worked at it. I’ve rehabbed myself. I’ve pulled out all the stops to figure out how to restore myself to my former abilities — and the very positive thing is, I’ve actually exceeded my former abilities. I now have much better skills than I had before my mTBI-inducing accident in 2004. Because I could finally see what was going wrong with me, I got help from someone who could assist me, and I worked at it.

Every single day.

It was my other full-time job.

I have to constantly keep this in mind, because it’s so easy to forget. I get caught up in my daily life, I get wrapped up in my everyday experiences, and I lose sight of the fact of how far I’ve come. I get tired. Every day, I’m wiped out at the end of it all, which makes it difficult to be thankful for anything. It makes it difficult to even think or keep my temper cool. Lately, I’ve been snapping a little more in the evening than I’d like, and that’s got to stop.

I’m hoping a good vacation will help with that. Even if it’s just for a long weekend at a waterfront down three hours away. It’s something. It’s a break from the regular grind. And it’s a much-needed “reset” for both myself and my spouse.

So, as I go through my daily life, these days, surrounded by people who are none too happy to be at work and who are deeply fearful about their future, I think about how much I have to be grateful for. I think about how much better I’m doing that I was in 2007. And I think about how much farther I have to go.

Once upon a time, all my dreams had evaporated. Once upon a time, I could see no clear path forward. Once upon a time, my life was collapsing around me, and I didn’t know why.

It’s not like that, anymore.

I’ve come a long, long way.

And I never want to lose sight of that.

Ah, Groundhog Day…

I have a feeling I’ve been here before…

I’m not talking about the recent event when the behavior of a groundhog (or groundhogs, depending on your regional preference) determines our future. I’m talking about the movie,”Groundhog Day”  where Bill Murray’s character goes through the same day over and over and over again.

This is my life in a nutshell. I cycle through the same experiences / crap / joys / sorrows on a regular basis, each time without much active recollection of how it was before and what my experience was then. It applies to the good things, as well as the bad things, and my neuropsych is repeatedly surprised that I’m wrangling with the same issues that I was wrangling with, several weeks, months, or even years ago. Sometimes I have “new” experiences that are repeats of what I experienced only the day before, and I have to go through the whole learning process all over again.

One example I can think of was back in December, when I had that business trip overseas. Each day, I got up with this terrible, terrible dread — almost crippling anxiety over what was going to happen that day. It was awful, and I literally did not want to leave my room. I just wanted to stay behind closed doors, where I had no interaction with anyone, where I couldn’t possibly screw things up, and where I could move at my own pace and not adapt to anything new or different around me.

And each day, I literally forced myself to get dressed and go out into the world. Each day, I rediscovered that I was able to communicate, that I was capable of understanding what others were saying, even if I didn’t get every single word, and that the world outside was something to be explored and discovered, not dreaded and avoided.

Then the next day when I got up again, it was back to battling the crippling dread, the fear, the anxiety… the monumental effort of getting myself OUT the door… and the happy discovery that I could indeed handle myself well in the world beyond the hotel room. And at the end of each day, I was able to kick back and really enjoy myself in that space, just reveling — all over again — in the “discovery” that I was really going to be okay.

Now I have another business trip coming up that will take me overseas. This time I am going to a country where I do not speak the language. I have been studying a bit, which has been kind of funny — I found some audio files to learn from, but when I started to listen to them, it turned out to be all “Stop or I’ll shoot!” and “Put down your weapon!” and “How many armed men are there?” — apparently a law enforcement or military training course. At least I know how to say “Don’t shoot!” if I get into any trouble while I’m on my trip. You never know… there are some pretty rough neighborhoods where I’m going.

Anyway, the point I’m making is that for some reason, I seem to have just a terrible, terrible memory for things that have happened to me before. This is true of good things… and bad things. I seem to get myself into situations, over and over again, doing the same thing and expecting different results, and then I suffer and chafe when things don’t turn out like I think they’re going to.

Like trying to get out of the house to get to work… Time and time again, I get up thinking that I can just take a little time to check my email and/or do some little things around the house, and then I’ll be able to get to work on time. And time and time again, I get sidetracked on one thing or another… and I end up rushing and being later than I wanted to be. I make up the difference at the back end, of course, staying late — even later than I would have to, actually, because I start to warm up around 6 p.m., and it’s hard for me to take a break when I’m finally making good progress. Even so, even if I do make up the difference in the hours, the simple fact is that I do this over and over again, thinking that this time it will be different.

Insane? Well, according to some, it is. Whatever you call it, it gets frustrating, and I feel like a complete idiot.

I guess part of the equation of this apparent failure to learn, is the fact that I have to stay very present in the current moment, or I can really lose my bearings. I think this 100% here-and-now mindset has developed over years of having to navigate so many issues — light sensitivity, noise sensitivity, exhaustion, vertigo, nausea, pain of all kinds, headache, distractability, and more — but still needing to be functional. I think I just developed the habit of focusing so completely on the present so that I could function in that moment, that everything else — before and after — just disappears. Or it never has a chance to get set in my mind.

I think also the stress of daily living over the years has impaired my ability to learn. Just having to deal with all the sh*t of my issues and symptoms and the screw-ups and the adjustments and the confusions and distractions… it can get pretty stressful, and I’m sure it’s had some impact on my ability to learn.

Then again, in other areas I learn extremely well — like this language thing. I’m actually picking up a lot of good stuff, and I think I’ll be able to at least ask people for help and understand basic numbers and directions, and be able to thank people for their help, without too much struggle. Languages seem to come pretty naturally to me, and it surprises me how much sense they make to me after a relatively short period of time.

So, it’s not like I’m completely disabled with my learning. But experiential learning? There, again and again, I end up going through the same things, as though it were the first time ever.

Well, I can’t worry about it. If I approach it like it’s a grand adventure of constant discovery, and I treat each situation like a fun opportunity to have a “new” experience, it’s fine. It keeps me fresh, actually. It keeps me interested in my life. It’s never boring — that’s for sure. The worst thing I can do, is treat myself this means there’s something wrong with me, that it means I’m somehow damaged. If I don’t judge myself and I just accept that about myself — and come up with ways to work with/around my very limited memory… and I don’t get it in my head that this means I have early-onset dementia and I’m losing my mind…. I can work with this.

Hell, I’ve been working with it for as long as I can remember. I just “get lost” sometimes and I have to find my way out of the shadows and dead-ends… which I can do pretty well. I’ve had plenty of practice, you see.

Anyway, life goes on. I have a number of very interesting projects I am working on, and that’s keeping me interested and engaged in my life. I’m learning new things pretty well, and I feel good. I also got a lot of sleep yesterday afternoon, after I was done with my work. I worked from home, so I was able to just crawl into bed when I was done for the day. That was nice. I got about 7 hours of sleep last night, so that’s good, too. And I have all day today and all day tomorrow to kick back and take care of myself. Because I’m flying out in another week, and I need to be healthy and whole to make this trip.

So it goes. Part of me would like to have a better recollection of the things that I have experienced in the past, so that I don’t keep making the same mistakes, and I don’t keep pushing myself and wearing myself out. And I’m thinking about ways I could do that — maybe keep a log of what works for me in different situations, so I can draw on what has worked for me in the past… I had that kind of a log going, about 3 years ago, and it was working well for me. I think maybe I need to resurrect it, so I can continue to draw on my experiences and get my sh*t together better than I currently am. It’s an idea….

Anyway, the day is waiting, and I’ve got to get a move on. It’s always interesting and never boring… and I need to remind myself of how things have been in the past, as I work through my present and into my future.

I’ve been here before, I’m sure… now I need to figure out how to make the best of it.

 

Another sort of amnesia

A really interesting thing has been happening with me, lately. It’s actually been unfolding over the past six months or so, when I think about it. More and more, I’m piecing scattered parts of myself back together. Most importantly, I’m becoming increasingly aware that there are pieces of myself I need to piece back together. I’m starting to remember things I used to love to do, things that used to be part of my everyday life, that I couldn’t do without… but suddenly became “pointless” after my last fall.

In particular, mindfulness and meditation are back. And I’m really focusing again on the re-development of the abilities and the interests that keep me focused, centered, and going strong. This return is big. It’s huge for me.

Now, it might not seem like that big of a deal. After all, everybody loses motivation, now and then. Everybody goes through ups and downs, shifting in and out of specific interests. Why get so worked up?

You have to understand — my shifting away from mindfulness and meditation wasn’t just a flight of fancy. It wasn’t just me getting distracted by other things and taking a break. When I got away from it, I not only got away from it, but I pretty much removed it wholesale from my life.

To understand the full impact of this, you have to comprehend what a significant part of my life mindfulness and meditation were, for many, many years. I had always been a thoughtful kid, growing up. Philosophical, even. I spent a great deal of time contemplating life and its deeper meanings, and I didn’t let the fact that I was young stop me from pondering age-old things. I would meditate on mountain vistas and campfires, commune with nature on solitary walks… be one with the universe while sitting and watching dust particles dance in a sunbeam.

In retrospect, I believe this tendency to contemplate and meditate arose naturally from my difficulties with everyday activities that other kids engaged in. I had trouble with my coordination — real balance problems, at times — and my senses were pretty sensitive when I was tired, which was a lot of the time. I never really fit in, like a lot of kids. But unlike other kids, who went out of their way to remold themselves to they could fit in better, I withdrew to a solitary, almost monk-like life of minding the smallest details of life and extracting meaning from them.

Into my adult life, too, I spent a tremendous amount of time contemplating and meditating, communing with the cosmos whenever I could. I found tremendous comfort in that, a sense of connection that eluded me in everyday life with other people. External situations that others found easy tended to baffle me, so I focused my energies on cultivating an inner life, an inner view of the world that was consistent with my heart and mind. I spent my free time reading and journaling and meditating and exploring spiritual matters. I wasn’t heavily invested in “the things of this world” because I had other interests in mind —  namely, my connection with that still small voice within.

It served me well, too. On the surface, spending a lot of time contemplating and meditating might seem like an interesting hobby, but what good would it really do a person in the real world?

Actually, it helped me tremendously, as I developed a practice I called “modified za-zen” where you maintain your mindful composure and presence of mind in the midst of chaos. It was a real “warrior stance” I took – being impassive and composed even in the face of full-on attack or a schedule packed full of highly stressful tasks. That practice enabled me to play a significant part in many heavy-duty projects at work, and it molded me into a truly competent team player who was a rock and a cornerstone of the groups I was with. It cultivated in me a presence of mind, a peace of mind, that was the envy of my spouse, my friends, my co-workers. Very little could ruffle my feathers, when I was in the zone. I wasn’t always in the zone, to be sure — I had various issues that would come up, no doubt related to my neurology, but that practice of mindful awareness and intentional composure made all the difference in some very tough situations.

After I fell in 2004, that changed.


Broken Bokeh by WatchinDworldGoBy

Suddenly, I couldn’t be bothered with that meditation stuff. And contemplation? Well, that just seemed like a huge waste of time. As for my composure at work and at home, well, who the hell cared about that anymore? I “decided” I was sick and tired of putting forth the effort to hold myself together. I “decided” it was high time that I had a break and stopped holding myself in check. There was a part of me that suddenly felt like making the effort to sustain my calm was stupid and weak. It just didn’t want to be bothered. It told me I was “choosing” to stop controlling my behavior and stop monitoring my moods and state of mind and actively managing them, but the truth be told, I just couldn’t. The part of me that had used to do that wasn’t working the way it used to. It couldn’t.

It was like the responsible, mature part of me that had good sense about keeping myself centered and sane had been shattered. And in its place I found a selfish, self-centered, self-pitying creature who had a hair-trigger temper and frankly didn’t give a damn what anybody had to say. If that part wanted to act out, it acted out, and it had the best of excuses for doing so. The part of me that had long been conscious of how vital it is to keep centered and calm and have mastery over my behavior, didn’t fully recover from that fall. It was like it got knocked out for a lot longer than my lights went dim, and while it was out, it got pushed out of the way by the other part of me that felt like any attempt at composure was cramping its style.

Whereas I had already spent many, many hours… indeed, many months of my life, if you add up all the hours together… cultivating an equanimity that was the envy of many friends and co-workers, starting at the very end of 2004 (I fell at Thanksgiving), I moved pretty rapidly away from that old practice of mine. And within a year’s time, I was in trouble. Deep doo-doo.

Of course, all this was pretty much invisible to me and my broken brain. I told myself, I had other things to do. I told myself, I had to focus on “real” things. I just let the meditation drop and walked away. And whenever some anger or frustration came up, instead of checking in with myself to see if there was any valid reason for me to act on it (there usually wasn’t), I indulged every one of my whims with a self-righteous self-justification that seemed perfectly logical to my broken brain, but logistically made no sense whatsoever.

The result? A lot of headaches at work, a lot of trouble at home, increasing money issues, relationship issues, and health issues. It just wasn’t good.

But all the while, as my struggles compounded, there was still that raging voice in me that was convinced it had every reason and right to accommodate every single negative impulse I had.  Seeing the connection between my feelings and my behavior and the consequences was next to impossible, in my diminished state. I had literally forgotten that it mattered, for me to get a grip.

Okay, enough background. The good news is, I’m coming back. Those old monitoring parts of me that I had worked so hard to cultivate, are coming back online. It’s more than just feeling better and more alert — I AM better and more alert. I’m able to wake up in the morning, I’m able to engage more fully throughout my days, I’m able to step back and take a look at my moods and my behavior and choose the sorts of responses that will work in my favor, not against me. I’m not just on this mad auto-pilot drive; I’m actually able to slow down and contemplate my life and find real meaning in it again.  I’m also able to relax — really relax. It’s pretty amazing.

And as the time passes, with each new success which I fully realize and appreciate, I build up my stores of lost self-regard, self-esteem, self-respect. I also build up my stores of self-control, and I can actually live without being right about everything, no matter what the costs to my relationships. I am better and better able to choose my responses, and even when people around me are acting up and seemingly going out of their way to provoke me, I’m able to pull back from the engagement, figure out what I want to do and say… and do it.

Yeah, it’s pretty amazing. What amazes me even more, is that I went for years without having this as a regular part of my life. It amazes me, I thought I could do without it.

So, I’m enjoying this. Thoroughly. I’m watching my life with a whole new interest, and I’m learning a lot. In a way, I feel as though I’m re-learning skills, like someone re-learns to read and write after a head injury. Like someone re-learns to walk and talk after a stroke. Like someone with amnesia who starts to remember their name, their family, their home, their work… Like someone who wasn’t even fully aware of having amnesia, who suddenly sees a world they once knew, and isn’t sure whether to be elated or dismayed. In truth, it’s a little bit of both. I’m elated that bits and pieces are coming back to me. But I’m also dismayed that I lost sight of them for so long.

It feels very odd to be writing this, and to be realizing it, but I guess I was a lot more impacted in some ways than I really realized. But now that I’ve “got” it, I can move forward. Progress is good.

What really piques my interest is thinking about what got me back on track. I think one of the big things that set it in motion, was taking care of my body — starting to exercise regularly, and waking myself up with exercise and stretching, rather than two strong cups of coffee. That, and stretching and consciously relaxing before I go to sleep at night.

I actually think that I developed a hefty dose of PTSD, in the aftermath. Not right away, not from the fall itself, but rather from the progression of small disasters — bite-size catastrophes — that have dogged me for years. The collapse of jobs, the dramas at home, the startling surprises that I didn’t see coming, the encounters that went poorly or that carried some sort of hurt with them… My sympathetic nervous system has been on high alert for quite some time, now, and it’s taken a toll.

But since I started making a point of caring for my parasympathetic nervous system — bit by bit, exercise by exercise, breath by breath — I have been able to feel a difference in my whole system. Sometimes it’s subtle. Sometimes it’s dramatic. But it’s there. Conscious breathing has played a significant role, of late.

It’s good to be getting back. I’ve been toughing it out just about all my life, but this past 5 years has kicked my butt, to the point where toughing it out is no longer the best solution I can think of. Now I have other ways of dealing with the crises and dramas — ways which involve really basic care of myself, basic care of my system, and attending to the details of my life with a much greater depth than I’ve been able to manage for a number of years.

But now I am remembering who and what I am. I am remembering what matters most to me. I am re-learning the wonder and magic of paying attention to little things, and seeking deeper meaning from my life than what the television has to offer. I am re-learning the discipline of just sitting and observing what’s going on around me, rather than diving in with the intention of “fixing” what isn’t mine to fix. I am re-learning the fine art of calm in the midst of storms, as well as making my way in the world in my own individual way.

I wish I could say it’s coming naturally to me. I used to be able to say that. I used to know it and feel it. I seem to recall that I used to not have to really work at it. But I’m not adverse to work, and if extra effort is required to get me back to a place where I can piece back my life into a state of quiet dignity and genuine happiness. then so be it.

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!

Writing lots to keep things simple

I had an epiphany today during my morning exercise. I realized that one of the reasons my life tends to fill up with all sorts of activities and I get swamped by so much to do – and spread so thin, I can’t focus fully on what’s in front of me… is because I forget what I am supposed to be doing. Not only that, but I forget why I am supposed to be doing it.

Someone wrote to me the other day that they used to feel like the guy in “Memento” who has to write everything down, because he can’t remember, from day to day, moment to moment, what he’s supposed to be doing.

It got me thinking… and I realized that I’m like that to — not on so extreme a scale, but this Swiss cheese memory of mine is problematic. And with my constant restlessness, I have so much energy, that I have to be doing something, but I don’t remember what exactly I’m supposed to be doing, or why, so I end up launching into another bunch of activities without realizing I’m forgetting something.

It’s like I have a rushing river in my head, and the gaps in my memory are like big boulders in the river. I’m in a boat that’s headed down river, and because all these boulders are in the way, I can’t go in a straight line. I end up flying downstream at top speed, but I get spun around, I bump into things, I go way out of my way on tangents, and I have to paddle like crazy to keep upright.

Meanwhile, the rest of the world is paddling downstream in rivers with far fewer rocks, they are better able to keep upright, and they arrive at their destinations a lot less exhausted and bedraggled and frazzled than I do.

Literally, when I get up in the morning, it’s like I’m starting a whole new day. That’s great for my optimism and general cheerfulness, but it’s not so great for my effectiveness. I tend to not think about what I was doing the day before, and how it ties in to what I’m supposed to do today. And if I’m not careful, I can get caught up in a whole lot of stuff that I don’t need to be doing, and which keep me from finishing what I’m working on, but which seem so interesting at the moment…

It’s been a huge problem for almost as long as I can remember — and even more so, since my fall in 2004. It’s impacted my work and my family life and my self-esteem, and I can hardly believe it’s taken me this long to realize this fact and the impact that it’s had on me.  No wonder I can’t get anything done in a timely manner — I keep forgetting what I’m supposed to be doing. But at least now I am aware of it. (It’s amazing what happens, when you communicate with another human being.) And now that I’m aware of the problem, I can devise a strategy for dealing with this.

My strategy is:

Keep a running list of the really important things I’m supposed to be doing, and make sure it is in easy view of me each and every morning. Keep that master list with me throughout the course of the day, and keep checking back with it.

I have to refine this, certainly. I have to figure out how to prioritize and manage my items, so I don’t get completely overwhelmed. A spreadsheet will probably help. I have one that I use for the Big Things I Need To Fix in my life. Now I need to come up with a way to record and track the everyday things I’m working on. I may also use a handwritten list. I’m still working it out, as I learn more about how my brain does — and doesn’t — work.

I do know that the more I write down about what I’m supposed to be doing, the simpler it becomes to get things done. My writing (especially in my journals) extends beyond the list-making and into the story-telling aspects of my life. When I write things down in detail (tho’ I have to be careful of getting swamped in the details), it helps me envision where I want to go and what I want to achieve — and why. The more I can work out in my mind, ahead of time, what I want to do, the less I have to think about it later. I can just look at my list and, step by step, get things done that need to be done. It’s important. Very, very important.

Well, it is a process, and it’s one that keeps evolving, as I get more and more information. The bottom line is, now I realize that having holes and weaknesses in my memory is one of the root causes of my ineffectiveness over the years. It’s not because I’m a loser or lazy. It’s because I literally forget what I’m supposed to be doing, but I have so much energy, I can’t just sit there, so I start other things… and then forget to complete them. It can be maddening. But that’s where tools and strategies come in.

It’s all a process. I’m just relieved I’ve realized how this aspect has impacted me. After all, you can’t fix something if you don’t know it’s broken.

Yesterday was a wash

… Just about.

I had carefully made up a list of all the things I needed to get done — I’m on deadline at work, and it’s vital that I get the things done that I started, and that I do them on time. But I never checked my list until about 3:30 p.m., and then it was too late to do a lot of it.

I was just exhausted from the weekend — lots of activity and staying out too late. It was fun at the time, but it took its toll. And the people I’m working with are not pleased.

I’ve just got to let it go. I can’t start out today feeling bad about yesterday. It’s a new day. And I also have to remember that I’m not the only one in my group who’s struggling with work, right now. We all are, pretty much. We’re a challenged bunch of people with divided attention, conflicting interests, and way too much going on in our lives, overall. We’re also getting used to working together in new ways. There’s old bad blood that keeps people stuck, and there’s new opportunity to move forward. Main thing is, keep moving forward. But yesterday that didn’t happen nearly as much or as well as it should have.

I have to do something about this. I have to get out in front of my tasks. I know better than to do this. But the part of me that was playing all weekend wanted to keep playing, so I ended up messing up some stuff — and feeling badly about it.

More than anything, what takes the biggest toll is the emotional stuff. Feeling badly about myself. Feeling badly about how I’m doing. Feeling incapable and incompetent. And then, even if I’m doing okay by most people’s standards, my performance is thrown off even more. Because I’m feeling badly about myself and my abilities.

But it’s a waste of time to feel badly. My brain is just different now, than it was before my fall in 2004. It just has different needs and inclinations, which I have to factor in and accommodate/adjust to, if I’m going to have the level of ability that I desire. If I’m going to accomplish what I set out to, I need to use my tools — my planner, my notebook, my to-do list.

And I need to have just enough things on my list to keep me moving, without overwhelming me.

The thing about lists, though, is that I have to keep all the items I have on my plate (short- and long-term) in front of me in some way. I have to keep all my priority items in plain view, or I just forget about them. Other people look at my list, and they get all freaked out.  They tell me “It’s too much!” But for me, it works. I don’t mind all that stuff in front of me. I’d rather have it there, than forget about it — which is what I’ve done in the past … only to remember that I’d forgotten things I seriously needed to remember.

Until I find a way to remember everything — or hire a secretary/executive assistant to do the remembering for me — the stuff I need to do eventually is going to stay on the list.

But back to yesterday. What did I do which didn’t work, that I can do differently today?

  1. I didn’t check my list, first thing in the a.m. — I’ve checked my list for today already, so I’m good with that.
  2. I got down on myself for falling behind — I’m not going to do that today… get down on myself. I’m going to try the best I can, and leave the rest to fate.
  3. I thought the whole problem was me — I know I’m not the only one having issues. It’s just that the other folks I work with are really good at covering up their shortcomings and problems, and so of course (since I’m very open about the areas where I am lagging), I end up looking like the one who’s bringing everyone down. Matter of fact, I’m not — in fact, one of the reasons I’m behind on my tasks is that the folks I’m working with made a total friggin’ mess of it before, and nobody bothered to sort it out, till I came along and said, “This will never do!”
  4. I didn’t take time to plan my day and catch myself up — Today I am taking the train to work, so I can read and prepare.
  5. I let myself lollygag around in the afternoon, when I was tired –– Today, I need to pace myself and do at least something in the p.m, when I hit my low point (as I always do). If I plan for my lull, and I do something like walk around the office or take a break away from my desk when I’m tapering off, I may have better luck. There is a common work area I can go to that’s far away from my desk — I’ll try going there today and see if the change of scenery helps.

These are just a few of the things I can do differently today. I already feel better.

No one has a clue how hard this is for me

Even I don’t, sometimes.

Seriously. I walk through my days, going about my regular business, living my life, interacting with people, doing what I do, making mistakes, making it right… working (hard) to keep up. And I do manage to keep up. Most of the time.

At least, that’s how it looks on the outside. I’ve learned, over years, to present in a certain way… to project a certain image… to do a passable job of fitting in, by mirroring the mannerisms and “social pacing” of people around me. And it works. I had to figure it out by trial-and-error, but I did eventually figure it out.

In my early childhood, when I was first learning about how to live outside my parents’ house — in school, especially — I had a very hard time fitting into my surroundings. My early grade-school years were rocky and rough, and I went through a lot of bullying and teasing and marginalization. I also had a very, very hard time dealing with academic requirements. I could pretty much get by, but it was — again — trial and error. I remember working so very, very hard to make my teachers happy… without fully understanding why they were asking me to learn certain things and complete certain lessons.

I think part of the problem was that, despite having a hard time keeping up with what was going on around me, I was ahead of the kids around me, subject-wise. I grew up in a family that valued education and spent a lot of time exploring the world of ideas. My parents were — and still are — very well read, and my grandparents were experts in their fields. I was well accustomed to sitting around talking about complex subjects… more comfortable doing that, in fact, than spending time playing with the kids around me.

And it was awkward. Very awkward for everyone. At least, I think it was. I didn’t understand my peers very well, and they didn’t seem to understand me at all. Or maybe my perceptions were skewed because of my TBIs — poor judgment, slowed information processing, and misperception of the actions and/or intentions of others are all hallmarks of TBI. Maybe everyone was fine with me; I just wasn’t fine with them (or myself).

Anyway, I don’t want to harp on all my difficulties. Let’s just say my childhood was somewhat challenging.

All that started to change, however, when I started getting connected with kids who were several years older than me. My family had moved to a new area, and we had started attending a new church. That church did not have a very large concentration of kids exactly my age — they were either several years older than me or several years younger. My parents talked to the youth director and managed to get me “in” with the older kids in the young adult youth group.

I really wasn’t sure about it, when I started. I was painfully shy — no, shy isn’t the word for it. I was completely out of my depth. All the boys and girls — young men and young women, actually — who were part of the youth group seemed so with it, so together, so … grown up. They seemed like they knew what everyone was saying when they talked, and they seemed to know how to act around other people.

I was amazed. I couldn’t for the life of me figure out how to initiate conversations that weren’t about some academic matter, and I sure as hell didn’t know how to keep a conversation going. I was petrified, the first months I hung out with the other kids. But fortunately, some of the most popular kids in the “gang” at church were second cousins of mine, and they knew me from family reunions. So, I was “in” with the crowd, even when I couldn’t manage to put two words together.

It would be really easy for me to focus on how challenging those years were for me. But I’d rather focus on how much I gained from meeting those challenges head-on, and learning from them. Those several years with the older kids — I spent about 3 years among kids who were several years my senior — taught me volumes about how to make my way in the world. By watching them and seeing how they interacted with others, I was able to model my behavior on something positive — and types of behavior that obviously worked. I watched the kids who were clearly popular and having a great time being alive, and I mirrored their words and actions. I’m sure I looked a bit spastic, at times, tagging along and clumsily imitating everyone at the start, but eventually I learned how to smooth it all out and “deliver a seamless presentation” of the kinds of behavior I saw other people using — that worked well for them in social situations.

I could tell things worked, if people laughed at jokes. I could tell things worked for them, if other people smiled when they approached. I could tell things were “clicking” socially, if everyone was relaxed and enjoying each others’ company. It probably sounds pretty remedial and basic, but that’s how I learned. And I learned pretty quickly, too — so long as I could be a part of the group, but still be able to withdraw, now and then, when I got overwhelmed. Because I was with kids who were some years older than me, I was able to get “special dispensation” because I was younger. I was “just a kid” so I was allowed to mess up, now and then. Not all the time, but they tended to cut me some slack, which was helpful.

The fact that all this took place in a church environment, where there were very strict rules about how you did and did not behave was very helpful also. All the boys were well-behaved, and all the girls kept to very high standards of behavior. Even though a lot of us eventually left the church and went our own ways, far from organized religion, the fact that there were clear guidelines in place for us to follow made it pretty straightforward for me to figure out how I should — and should not — behave around others. The kids who were ahead of me modeled acceptable behavior, and I followed their example. I was part of a “gang” — but the gang was all good Christian kids, so I had the benefit of being in a group of pressuring peers who pressured me in directions that did not lead towards drugs, alcohol, petty crime, and teen sex.  (That pressure took place in the other “gangs” I ran with, several years later, in school and at jobs I held.)

During those early teen years in the church youth group, I learned how to integrate socially through the various activities we had — Sunday School, prayer meetings, weeknight services, organized youth group activities, like trips and outings, Bible quiz team, and countless other get-togethers that were organized by the youth leaders. They really did have a good program, I realize in retrospect, and I benefitted from it a lot. Being able to be around kids who were older than me gave me license to just be who and what I was — a little dorky, a little geeky, gangly and awkward and prone to say dumb things that were out of context — and be accepted, anyway, because I was young. I don’t remember being stigmatized, probably because it was generally expected that I was supposed to be different — but that was because of my age, not because I was a queer little brain-damaged freak who couldn’t fit in with my peer group.

What a relief it was, to be allowed to be different! I had been battling against my social surroundings for years, but that had gotten me nowhere. And I mean, nowhere. Standing out as being different (which was my “default setting”), had resulted in a lot of bullying, ridicule, and general hardship for me. It had also not helped my academic performance or my general ability to get by in the world. But being able to hang out with kids who were not only older than me and showed me how to behave, but being given some leeway with how I behaved, totally took the pressure off.

I was finally able to relax, socially. And I was able to learn. I was able to pattern my demeanor after the most socially successful members of the youth group — the guys and gals who were the most capable, the most popular, the smartest, the most respected-by-adults. I’m sure I looked kind of dense, stumbling and bumbling my way after them. But you know what? No matter how dorky I looked around the older kids, when I was around my own peer group, those behaviors and mannerisms made me look a lot more mature than I felt. I didn’t need to understand exactly why someone would say certain things (like social pleasantries) or do certain things (like strike up a conversation with people you’ve never met before in your life). I only needed to understand how they did it, and that it worked for them… and perfect my impressions of the most socially successful people I knew.

Granted, my “performance” wasn’t always perfect, and there were a lot of false moves over the years that got me in trouble with older kids and teachers and other authority figures, but you know what? By practicing and practicing and practicing some more… observing carefully when others did things that made them look good… by rehearsing the “role” I wanted to play in the world in the privacy of my own bedroom, out in the woods where I could have some alone-time… by constantly checking and re-checking the results of what I’d done, learning my lessons and “taking my lumps” as I went, I was able to build a really compelling and convincing repertoire of social graces that have stood me in good staid.

Okay, so my parents were probably pretty concerned throughout the course of my life, when I’d spend hours just talking to myself. And I’m sure they’ve often wondered about me walking around having animated, in-depth conversations about topics I’m passionate about… with no one in particular. To this day, I still have extended animated converstions with myself when I’m alone or in the car driving. I do it — and have always done it — to work on my vocal pacing, my delivery, my presentation. I have a role to play in the world, and I know well enough (inside my own woolly head) how hard it can be for me to keep my act together. I get lost all too quickly, so I need to keep my composure skills up, and “running the lines” my life does it for me. This “regular life” stuff doesn’t come easily to me, so I have to work at it, work at it, work at it some more. All the time, whenever I get a chance.

Fortunately, I enjoy it, and when I’m having intense, protracted discussions with myself, pretending to talk to another person — breaking now and then to let “them” get a word in — I’m usually going on about something that captures and holds my interest. So it’s not work as much as it is effortful play. And it pays off.

In countless ways. Can I just tell you, the best validation of my efforts has been all these people telling me, over the course of the past year or so, that they never would have guessed I had a head injury, let alone half a dozen. It never would have occurred to them that I was anything less than perfectly normal. On the outside, then, my presentation is intact. And all my hard work has paid off. The countless hours I’ve spent analyzing my interactions with the world, checking and double-checking the results of my relating to others… the untold time I’ve spent carefully tweaking my demeanor during the course of converstaions… the tricks I’ve picked up about how to interact effectively with others… it’s all paid off. Big time.

Now there are some days, of course, when I feel a lot more like a fraud than I feel functional. I feel like I’m just walking through my days playing a role that has nothing to do with me. I’m sure a lot of people feel that way — especially as they age and start to examine their lives. But with me, it’s especially pronounced, because there are many, many times I say and do things without even thinking about them which don’t sound anything like me, or what interests me, or what I care about. There are times when I’ll get to the end of a conversation or a complex interaction with someone and realize that I have no idea what just happened — I wasn’t even personally involved in the interaction. I didn’t even say what I meant or thought or felt. I just mirrored that other person, without even knowing what I was mirroring. They thought for sure that I agreed with them wholeheartedly and was validating their point of view by repeating it back to them, but I was really just saying and doing the bare minimum to get in and out of the conversation without getting too turned around.

Indeed, this is the great pitfall of this approach, socially successful as it may be: that I can get swept up in a chain of events that I don’t agree with, don’t care about, don’t even want to participate in… because the action is moving a lot faster than my little brain is, and I’ve unconsciously mirrored everyone so well, that they enlisted my help and swept me into their grand designs without my ever consciously assenting to it. And they think that because I’m able to mirror them so well, I’ve consciously chosen the path they’re taking because I’m as totally into it as they are… But I haven’t deliberately chosen.  And I’m not totally into it. I’m totally into nothing more than just participating and navigating the situation successfully enough to not be found out as a head-injured dimwit.

It can be a problem. Especially when I try to slow down the action long enough to say, “Hey – I need a while to think this through before I get involved.” Slowing things down is terribly difficult for me, in the first place, because I tend to be highly impulsive and get swept up into the energy of things. I also hate feeling as slow as I am, and I hate feeling so friggin’ retarded — as in the literal meaning “to be delayed”, which is exactly what I am at times. I have developed an elaborate and effective cover/compensatory strategy for my limitations, and I like how I feel when I’m “under cover”. I like feeling whole and hale and hearty and fast and smooth and with it. I like feeling complete and well-integrated. But when I “buy my cover” and forget that it’s just that — well, things can break down pretty quickly.

I suppose it’s all a balancing act.  There’s no way I’m going to just dispense with my compensatory behaviors — why should I? Everyone needs a little cover, now and then, and plenty of people say “yes-yes-yes” while they’re trying to buy time to think things through on their own, in the privacy of their own heads. But I don’t want to fool myself into thinking that everything is perfectly alright, since I can present well, articulate, keep my act together in very controlled circumstances. I don’t want to fall into the habit of thinking that because I can function very well in a highly structured environment where I’m literally just mimicking people around me and able to perform well as a result, than I can duplicate that same level of effectiveness out on my own.

I’ve tried it, and it doesn’t work. I once thought that my on-the-job skills at my highly routinized, heavily project-managed 9-to-5 position at an established corporation would translate into the same level of effectiveness and success when I started my own company. But I was wrong, and that experiment ended very, very badly. I’m still picking up the pieces.

I once thought that because I saw other people conducting workshops and I understood the form and structure of them, that I could duplicate their efforts and do just as well. What happened was, I got 10 minutes into the workshop and lost control of the “flow” and ended up riding a wild bucking bronco of a workshop where everyone talked out of turn and wouldn’t stay on-topic — very similar to what happens inside my head when I’m tired and overwhelmed.

I once thought that because I had worked in financial services for many years, and I had a burning interest in financial planning, that I could and should become a financial planner. But I ended up enrolling in a program for a bunch of money and then was unable to even finish two of the six courses. I was also unable to get more than a C grade in the two tests I took. And I had no idea why! As so many times in my past, I actually forgot about the program for a while and wandered off to do other things… and it didn’t fully sink in that I was supposed to be working on it until I got a notice that I had all of six… then three months left to complete the 18-month course. It slipped my mind, for the most part… and I couldn’t finish the program. What could — and should — have been a simple matter for me turned out to be a whole lot more complicated than I thought it would be. And I was a whole lot less up to the task, than I had assumed.

I once thought that because I had worked with many different kinds of lawyers for many years, that I could read and analyze and understand important legal documents for my family, but I ended up really turned around and confused, and if it weren’t for the fact that I had a good lawyer waiting in the wings, I could have really screwed things up.

The wild thing was — I had gotten myself into all these messes at the urging of others around me. Others who were so very, very sure that I could handle myself perfectly well, that I was perfectly capable, that I was perfectly equipped to deal with all of this… who had no idea at the time (as I) that there were some serious neurological impairments holding me back. There weren’t a lot, but there were enough.

And as a result, I have danced on the edge of disaster repeatedly throughout the course of my adulthood — and I’m still running into instances where I overestimate my capabilities. They’re less and less pronounced, and I’m getting more acclimated to “quality controlling” my assumptions, but the risk still exists that I might overreach and not realize I need to take special care to compensate for my limits.

I suspect that these may be good examples of anosognosic hazard — having lacking self-awareness get in the way of living your life. I know that they’re good examples of how buying my own cover can get me into trouble.

The thing is, I don’t feel like being disabled, I don’t feel like being head-injured, I don’t feel like making special exceptions for myself. But when I don’t at least consider that my broken brain may be complicating my life needlessly… getting me into trouble, yet again… well, the feeling of being in hot water is far worse than the feeling of tending to my relatively few special needs.

I really, really hate having to consider how difficult some things are for me. I detest having to bumble and fumble and stumble my way through situations until I figure out how to handle them. I cannot stand having trouble with sequential steps and not being able to remember stuff that “should” come easily to me. Most of all, I hate the idea of revealing to others how hard I have to work to do the most basic of things, like getting up and going through my routine each morning, and actually getting to work on time. It’s embarrassing, it’s disconcerting, it’s a total downer. But that’s how it is.

And even if I don’t show it to everyone else, it’s important that I not lose sight of it inside my own head.

‘Cause you can’t fix something, if you don’t know it’s broken.

How severe was my injury when I was 8?

My parents are coming to visit me next weekend,and I’ve been thinking a lot about my earlier injuries and how they affected my childhood. How they affected my development, how they affected my interactions with people, how they affected my future. When I was seven, I fell down a flight of stairs and was very dazed and confused and wasn’t able to talk. And when I was eight, I was hit in the head with a rock and knocked out for a while. (I tell that story here.)

In the ensuing years of my childhood and youth, I had more injuries — concussions and falls. It was not uncommon for me, while playing, to fall hard and/or hit my head and get up a little dazed and confused… but keep playing. Just keep playing.

Now, concussions alone could account for a lot of the problems I had when I was a kid — problems understanding what people were saying to me, problems with distractability, problems with temper outbursts, problems with getting really turned around and confused… lots and lots of mood and behavioral problems that my parents handled with faith and prayer and lots of structure, rather than pharmaceuticals.

In retrospect, I think it really helped, when I was young.  The structure gave me a framework to live within, the faith gave me something bigger to hang onto, and prayer offered me a way to ask for help from a Higher Power when I couldn’t find the words or the means to ask for it from human beings. It was a pretty exacting way to live, though. My family was very religious, and my parents were very strict (at that time) about what was permitted and what was not… what was sinful and “worldly” and what they considered pleasing to the Lord.

But while that faith and prayer gave me a much-needed support system when I was young, when I entered my teen years, it backfired. As I grew older, I still had a hard time, cognitively and behaviorally speaking. The problem was, I wasn’t just having troubles at home, I was having troubles out in the world. Teen years are marked by increasing social activities outside the home, and I just didn’t do a very good job of handling myself. I was alternately shy… and openly rebellious. I was alternately a high achiever and a slacking ne’er do well. I did a lot of good and helpful things in my youth, including saving an elderly lady who was trapped when the open door of her car (it was not in park) rolled and pinned her leg to a very large object (I can’t remember what it was, but she was pinned, and the metal of the door cut into her leg — I can still recall the sight of the inside of her fleshy thigh cut open — I guess my brain selectively records images). But I also sold drugs and bought liquor underage and distributed it to friends. I wasn’t a big-time criminal, but my later youth was marked by a lot of the warning-sign activities of criminals in the making.

Jekyll and Hyde… or head injury? Given the number of injuries I’ve had over the years, and the fact that a lot of my rebellious and “alternative” behavior was directly connected with an internal storm of confusion and agitation and rage that never disappeared, only subsided a little, I think the latter applies.

Okay, so all that being said, I have been wondering a lot, lately, just how severely I was injured when I was 8. I was knocked out with a rock thrown by some kids who didn’t like my looks and had been taunting and teasing me and my sibling from a distance. We didn’t respond, and they started to throw rocks. My sibling wanted to leave, but I said “NO, we’re staying right here.” I still feel awful about it; they could have been injured, instead of me. But I was hard-headed and stubborn, and I didn’t want anyone to chase me away from doing what I was doing.

Anyway, after a number of rocks landed closer and closer to us, one clocked me on the head. I recall feeling a dull-sharp impact and thinking, “What was that…?” and then I went down.

The next thing I remember, I was looking up and my sibling was hovering over me, crying, with tears streaming down their face. I was woozy and wobbly and at first I wanted to stay and keep playing, but they were so upset, I realized I couldn’t keep us there. I was also not feeling so great, and they led me home to my parents, who had me lie down on the couch while they called a friend who was a nurse, to find out what to do. I didn’t want to do what they told me to — I didn’t want to lie down, I didn’t want to hold still, I wanted to either get up and move around or go to sleep. I remember trying to sleep, but they kept me awake. I seem to recall being really tired, but also kind of punchy and agitated and restless. Eventually, as I recall, after checking my eyes with a flashlight a number of times, they let me get up and move around. And my life went on.

When I think back on that time, it seems to me that it was a pretty serious deal – but I’m not sure how aware of it my parents were.  Or anyone was, for that matter. And when I think back, I honestly can’t say how long I was knocked out for. I might have been out for a few seconds, a few minutes, even an hour or more. It’s impossible to say. My sibling can’t recall the event clearly, so I can only guess at how long it was.

And up till recently, I’ve been thinking I was out cold for a relatively short time. But it could have been longer. I can’t recall the kids who attacked us being in the field when I came to — I can’t recall how the light of the day was, and I’m not sure if my parents were concerned about my sibling and me being out longer than we should have been.

But to be accurate, there is a chance that I was knocked out for longer than a few minutes. It could have been much longer. And from what I understand, the length of unconciousness is an indicator of the severity of an injury, which can also be an indicator of long-term problems. Given the level of difficulty I had when I was a kid — particularly during and after 3rd grade… from that point on, life was one big obstacle course for me — I have to wonder if maybe I wasn’t injured worse than I thought I have been thinking I was.

I need to do some more research on this… It could be a good thing to learn. And I think it might help me talk to my parents about my childhood. Because despite learning a lot and putting a lot of things together over the past year and a half, I haven’t yet discussed my TBIs with them. I haven’t discussed them with anyone in my family. But next weekend, I think that’s going to change.

Figuring out how to talk to my parents about my childhood TBIs is actually one of the big action items on my plate, these days (in addition to working like a mad person to keep my job and keep up with my work… organizing my study in a way that helps me, not hinders me… clearing out old files and projects that were artifacts of TBI-induced agitation, rather than being something that would ever bear fruit… and tending to my marriage and home life). My folks have been saying for years that they can’t figure out what they did wrong to make me so unhappy when I was little. They can’t  figure out why I took so many wrong turns.  They can’t understand why I was so angry and rammy and difficult — what did they do wrong?

I have to tell them, it wasn’t them that caused the bulk of my many issues. It was TBIs. Getting hit on the head. Hard. And at an early enough age that it sheared and skewed the connections in my developing brain so it couldn’t develop “normally,” no matter what they tried. I have to tell them it wasn’t all their fault, and that all things considered, they actually helped more than they hurt.

For all their flaws, for all the things they might have done differently, my parents did create a home where I was able to develop habits of self-inspection and introspective reflection. They created a very structured and well-organized environment in which I could safely do things like paint and draw and write stories and express myself and learn things and be my own unique (and sometimes very weird) self. Certainly, it might have been helpful, if they had taken my shortcomings into consideration more and not overwhelmed me constantly with so much friggin’ input (my mother has always been a manic force of nature, God love her). But the fact that I’m still here, still standing, still able to keep motoring on, despite pain and agitation and confusion and generally feeling like I live my life in the dark and have to just bumble/stumble through a lot of things the first time, before I figure out how the heck to do stuff… Well, I have my parents to thank for that.

Even if my TBI at age 8 was more than mild — even if it was moderate — they raised me in a way that made it possible to keep going, keep moving, keep making my life the best that it could be.

And for that I am eternally grateful.

Now, I have to figure out a way to tell them, when they come to visit. I don’t think I could live with myself if I didn’t.