My last decent vacation in a good long time…

The way life goes, you never know how things will shape up. I’ve had so many hopes and dreams over the years, and so many times, I’ve been on the verge of really breaking through… then something happened. And that “something” was often a TBI.

I was just getting my act together in elementary school, finding my footing with my peers and getting involved in a special program for “gifted” kids and discovering what worked for me, when I got hit on the head and things changed. I became combative. Difficult. A behavior problem. So much for the gifted program. They showed me to the door on that one.

My family relocated, and I was finally figuring out how to interact with the people around me (who all talked with thick accents I could barely understand). Then I fell out of a tree and wrenched my neck. And I kept hitting my head while playing sports. Football. Soccer. Just playing outside. Hitting my head was routine. I can remember a number of really significant blows to my skull that disrupted my consciousness, but they happened against a backdrop of regular clunks on the head. It seemed like every time I got on my feet and started feeling like I had a grip on my life, I’d get hurt (again), and I’d be back at square one.

I eventually got out of my parents’ house and got on with my life. When I drank a lot, I fell down — a lot. I may have (probably) hit my head a bunch of times, but I don’t remember much from the 4-5 years after I left my parents’ home.  Those years that could have been some of my best (and in some ways, they were). They could have been years of exploration and learning and experience like no other, but instead they were mired in the muck of hangovers and all the confusion that comes from not knowing what happened the night before. A few scrapes with the law… being ostracized by my peers… some violent confrontations… making money by borderline means, just to get by… it was definitely an experience — that’s for sure. But it took me years to recover from the damage I did to myself.

After I was in the working world, driving to work each day, I got in a bunch of car accidents. They weren’t huge deals, mostly just fender-benders, but whiplash and getting clunked on the head didn’t help matters any. During years when most of my peers were getting on their feet, finding their way in the world, I was scrambling. Trying to catch up, after being set back. I got a job, then got hit by a speeding door-to-door salesman. I left that job without saying why. Just left one day and never went back. I relocated to a really great city, but just before moving, I got rear-ended and spent the next several months in a manic haze.

Years later, I had a pretty decent job with a lot of responsibility, then got tangled up in a 7-car pileup, and everything fell to pieces there, too. That worked out okay in the end, because I found a much better job and a completely different career track, but it did a number on my self-confidence, and it caused me to pass up a golden opportunity that my new manager laid at my feet (and begged me to take). I can only imagine how much more stable my life would be now, had I actually taken them up on it.

The last and most debilitating TBI was when I fell down a flight of stairs at the end of 2004. I was just 18 months away from having some investments mature, and if I’d been able to hang in there and keep up with my life, I could have repaired and paid off my house, gotten rid of my debt, and really solved a lot of logistical problems that are the kinds of things that only money will solve. None of that got solved. It all fell apart. And it’s taken me 12+ years go piece it all back together to just a semblance of how things once were.

So, what does this have to do with my current vacation (which is now drawing to a close)?

In the course of my life, I’ve never known just when everything would fall to sh*t. It’s partly me being oblivious, partly me not having a reliable crystal ball that lets me peer into the future. So, all those times when I just assumed I’d have time to do this, that, or the other thing… all those times when I thought I was set… all those times when I didn’t pay attention to what was Right In Front Of Me… in so many cases, they were the last hurrah for that part of my life. The last shred of self-confidence. The last vestiges of feeling competent. The last months of feeling like I could actually plan my future with certainty. The last weeks of being able to take certain things (like how my brain worked or how I’d react to experiences) for granted.

I didn’t savor those things when they happened, because I was too damn’ optimistic. Too oblivious to just how sh*tty life could get for me. Not experienced enough to realize that things could get That Much Harder for me in a moment’s time. I took them for granted. I didn’t wring every last bit of goodness out of them, while the goodness lasted. And now I just look back on a lot of wasted opportunities and chances I totally missed enjoying… all because I thought there would be another time that would be somehow better.

I don’t believe that anymore.

Especially not this morning.

From here on out, my vacations will probably be a lot more work than relaxation, a lot more frustrating than renewing, and a lot less worth it to me. But they’ll continue. Life goes on. Sh*t gets complicated. So it goes.

For today, I’m just going to enjoy myself. Because this might just be as good as it ever gets.

I have the next week OFF

Soon…

I’m leaving for a week’s vacation today. I have a handful of errands to run before we can get on the road, and then we are heading out to a waterfront town that’s full of art galleries and novelties shops and all sorts of great restaurants. We have a few restaurants that we really like, but mostly we avoid the crowds and excitement, buy Mexican or Chinese takeout and head for the beach for our own waterfront dining. It’s the best way — sitting in the car right at the edge of the water, having a nice filling meal that doesn’t cost a million bucks.

It’s going to be nice to get away. It’ll give me time to think, time to relax. I realize that I’ve been stuck in limbo with my life for some time. There’s been all kinds of drama in my immediate and extended family for the past 15 years — actually, longer than that. More like 40 years. And it’s really dragged me down, watching everyone go through their problems — me included.

But now, here I am, at a place in my life where I just don’t feel like I have the time to fritter away on feeling terrible about things that I can just take care of. I’ve learned a whole lot about how to deal with my TBI issues, and I’ve made an amazing recovery. So why not enjoy it?

Why not, indeed? I feel like I’m at a point in my life where I’ve learned more than enough hard lessons, I’ve been through my make-or-break circumstances, and I’ve made it through. I’ve paid my dues. Now it’s time to just enjoy my membership.

It’s funny… I don’t tend to think of myself as that old. I’m really not. But I have been knockin’ around on this planet for over half a century, and I’m kind of over the whole newbie experience. I’m not a newbie. I’ve been around the block plenty of times. And it’s about time I just settled into living my life and enjoying it, instead of constantly pushing myself to “take it to the next level”.

Please. What next level? No matter how hard I work, no matter how hard I push, there will always be another level ahead of me. So, why not just settle in and get the most out of the levels I reach? I haven’t done nearly enough of that over the years. And while it does keep me sharp and invested in my life, it’s also depleting and drags me down.

Eh, whatever. I’m going on vacation. I’ll probably blog a bit while I’m there. Just relax into it, do some writing, have a good time, while I’m at it.

And now… it’s time for more errands, as I prep for my 7-day escape.

Onward.!

When things don’t turn out… as expected

I 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

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.