When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.


Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

Keeping up with keeping up

As time goes on, it never ceases to amaze me, how easy it is for me to be pulled off track in all sorts of directions. Distraction is a huge trap with me, and the cumulative effects can be pretty brutal.

I start out knowing I want to get from Point A to Point B. But all around me, there are tons of distractions… Little things I think are important, but really aren’t… Big things that may be important, but are keeping me from focusing on reaching my ultimate goal, one step at a time.

I start out wanting to go from Point A to Point B… but those other things look so interesting… and I end up getting pulled in all sorts of different directions.

And sometimes I never get to Point B. It’s just not good.

So, what I have to do, is just block out everything outside my main goal, and focus exclusively on that. I can’t afford to be distracted, I can’t afford to be pulled off in different directions.

I have to keep myself involved and invested in what I’m doing with myself, so I don’t get pulled all over creation, chasing after this and that and the other thing.

But how? How do I build a proverbial wall around the things I’m working on, to keep focused and involved?

I’m still working on that, but one of the things that works for me, is resisting the urge to go off and do something else, when I feel as though I have just completed a task, and I want to change up the pace.

I say “feel as though I have just completed a task” because a lot of times, I’ll get the sense that I’m done with something, when I’m really not. There are extra details that are left hanging. Loose ends that need to be tied up. But in my constantly restless brain, I get antsy, and I get pulled off into other things. I tell myself I’ll come back to what I was working on later, when I’m more rested and relaxed.

The thing is, when I’m antsy, I tend to get pushed into high gear, which has me frantically doing the distraction-thing (like picking up some other piece of work that’s pretty involved), and in the process of distracting myself from my prior agitation, I fatigue myself even more, and I become even more prone to distraction and poor attention.

Which sets me waaaaay back. It’s not good.

This impulse control business is just nuts… And the attentional issues… oh, please. It’s just too much, sometimes. If I’m not careful, I’ll end up ranging far and wide, thinking I’m being productive… and I’ll get nothing done in the process. It’s a downward spiral of worsening distractions and increasing workload. Crazy. Crazy-making.

So, what I’ve been doing lately, which has been working out really well for me, is when I’m done with a very demanding task which has either upset me or tired me out, I’ll just step away and take a break for a few minutes. Gather myself back in, catch my breath… and then I’ll go back to following up on what I was just working on before. I’ll write up my notes from the experience, highlight the lessons I can find, and I’ll mark any follow-up items that need to be done.

I have to do this right away — or I will forget the things that are important, which need following up. If I wait, I am lost. And it’s no good trying to reconstruct the experience, days — even weeks — later. My brain thinks I can do it, but it’s wrong. I can’t.

I also have to keep a calendar pretty carefully, showing what I’ve worked on in the past. I have to not only keep a calendar of what I need to do in the future, but also keep one for what I’ve done, so I can keep track of the balls I have in the air. I tend to literally forget what I’m working on, and then I get distracted and wander off in all directions.

A retrospective calendar is key for me. Without it, I get into real trouble. And it needs to be in monthly format — with 4-5 rows of 7 squares, one for each day of the week — so it’s more visually meaningful for me.

Keeping up with keeping up is not always easy. And it requires specific tools and techniques:

  • Sticking with tasks until they have been completely followed up on.
  • Taking breaks when I am tired, and always coming back to what I was doing before.
  • Planning my time carefully, with an eye to what I need to accomplish.
  • Keeping a calendar for my past and my future, so I don’t forget what I’m supposed to be working on.

The most important technique of all? Keeping in mind the possibility that I might be forgetting something, and I might be letting something slide… and doing a reality-check to make sure I’m correct. I can check my notes, I can talk to people, I can consult my project list. Whatever I do, I dare not forget that I’ve got things going on.

The main thing is, not to give up. Not to quit. Not to abandon the job before it’s done. And to remember, my brain might be telling me I’m good to go, long before that’s the case.

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.

Getting it done – and enjoying it

I’ve been reading and hearing a lot of good things, lately, about how to keep on track and keep performing at a high level, despite TBI. It’s really encouraging to read about people who are high-level achievers, even though they were injured badly enough to be in a coma. It gives me hope.

And it lights a fire under me to get my act in gear, with respect to my day job. For years, for certain projects, I’ve kept careful project plans and checklists about what needed to be done. I’ve been able to plan, implement, and carry through on some very intense national (and even global) initiatives, working as an effective team member on projects that affect hundreds, thousands, and even millions of customers. And I’ve kicked ass. I can see a really strong history of achievement, despite my various injuries, and some days I wonder how I’ve managed to do it, day after day.

My longest-running project that I’ve headed up — a national media project that ‘s lasted for 13 years and is still going strong — has been operating nearly seamlessly (aside from some agitating regulatory issues and changing legislation) and it has a national audience that ranges from the Arctic Circle into subtropical islands. Every week, I walk through the steps of Getting It Done, and while some people’s heads would whirl at all the incremental actions, by now it’s second nature to me.

The ironic thing is, this project was first started around the time I was in a car accident that knocked me for a loop and wiped out a lot of the organizational skills I had, as well as the initiatory and motivational resources I’d had — in abundance — prior to the accident. Before the car crash, I had a number of really important initiatives going at my day job, overseeing a small group of producers and being third in administrative command at a mid-size professional services firm in a prominent city. I really had a lot going for me, at the time, and I had good plans and intentions. I was also active on the side, getting together this media project that was more a labor of love than a j-o-b. It was never done as a money-maker, per se, only as something that would make the world a better place — literally.

Then, I was involved in a multi-car chain-reaction accident in Thanksgiving traffic. It wasn’t a pile-up, exactly, but I did hit the car in front of me (their brake lights were out, which made it more difficult to see what was going on), and I got hit from behind. Double-whammy. Aside from being dazed and confused, I didn’t feel like I’d been really injured. And it never occurred to me that not being able to read or make sense of the claim form for the rental agency, not being able to see damage to the car that was right under my nose, and being so clumsy that (a few days later) I slammed my foot so hard I needed to get an x-ray to make sure I hadn’t broken it, might be signs that there was something wrong.

No surprises there — head injury has a way of masking itself. Maddening!

Anyway, in the ensuing months at work, my position become increasingly hectic and my ability to handle it decreased. Everything seemed so much more chaotic. I blamed it on the business, which was struggling under its management (and the problems it had inherited from past administrations). But in retrospect, I can see that I became much more scattered, much more sensitive to sound, and I couldn’t concentrate like I had been able to before, which was tough because my position was smack-dab in the middle of the storms that raged there on a regular basis. The projects I had, which were important to the firm, fell by the wayside. I slowly lost my hold on the group I was managing. And I became intensely stressed and depressed.

That job fell apart… but it also gave rise to a new career — one that involved a lot more machines and a lot fewer people. I went from being a manager to being a technical producer, and it was good for me. Very good for me.

At the same time, I was also getting this media project up and running, and things actually went really well with it. We started out small, then built and built and built, and now it’s enjoyed nationwide on a weekly basis. Ironically, this project came together just as the other job I had was falling apart. And I’ve been wondering how that could be — weren’t my sudden disabilities the same, all across the board? If I had such a hard time dealing with my projects at work, shouldn’t I have had trouble with my side projects as well?

Actually, no. There were significant differences between the two different situations.

  • In my day job, it was very chaotic and loud and there was constant interruption.
  • In my media project, it was just me and one other person putting it all together, and we were in lockstep with each phase of the launch.
  • In my day job, I wasn’t able to move at my own pace — I was on someone else’s schedule, and I had to constantly factor in everyone else’s input.
  • In my media project, I was able to pace myself and take things as I saw fit, with no one to report to, no one to take me to task, no one to impose their will on me.
  • In my day job, I had to navigate a lot of social minefields, which I did poorly.
  • In my media project, it was all task-based, and very objective, and the interactions I had with people were very technical and scientific and binary — a lot of simple yes-no questions, rather than the vague grey areas of the social scene.
  • I was doing my day job because I had to, because it was ‘the thing to do.’
  • I was working on that media project for the love of it, and because it was a dream of mine — and the person I was working with.

Over the course of my working life (more than 30 years, as I started working for pay when I was in my early teens) I have been through a number of “enagement incarnations” — variations in the level of investment I had in the job I was doing. Growing up, work was just something that was done. There was no questioning whether it was fulfilling or met some inner need. It was done because that’s what you did. You worked. You didn’t ponder the meaning of it all, you didn’t ask whether it was furtherthing your own personal growth, and you sure as hell didn’t moan and groan about the unpleasant parts. That’s just how life was. Life was/is work. And if you want to live like a regular human being, well, you worked.

So, there was never much call for me to get caught up in motivational stuff and getting all invested in my jobs. I just did what I did, and I did it to the best of my ability, and I didn’t sink a lot of my soul into it. I just performed my role(s) and went home at the end of the day. End of story.

Which was fine, when I was 20-something (even 30-something) and didn’t have any pressing responsibilities. It was fine, when I wasn’t in charge of a household with dependents, and making sure a mortgage was paid each month. It was fine, when I was still blissfully unaware of all the screw-ups I was making and could freely move from job to job and not worry about the long-term consequences. In a way, prior to my fall in 2004, I led this charmed life of ignorant bliss, always keeping a step or two ahead of my screw-ups, keeping moving before people could figure out that I wasn’t performing nearly as well as I presented, focused more on the excitement of new (and entirely useless) information that teased my mind but sucked the usable daylight hours out of each and every day.

Then, in 2004, when I fell down the stairs, it all caught up with me. And years of distractions and not keeping myself current and not focusing on the basics at my day job, just pulled the rug out from under me. It wasn’t so much that I didn’t have useful and marketable skills. I did. But my coping skills, my ability to handle stress effectively, my ability to interface well with other people, my ability to be productively invested in my day job and perform as a key team member, and my ability to keep on-task and focused and follow through, proved to be a lot less developed than I thought they were.

I didn’t have the kind of foundation I needed to feel really comfortable and confident in the outside world, and now I’d sustained a mild traumatic brain injury that scrambled things even more… and exacerbated all my issues.

And the money started to disappear…

Now I find myself at a critical juncture in my life. I can’t afford to not deal with the ongoing issues I have, and I can’t affort to kid myself about what is a problem for me, and what isn’t. I can’t afford to go, day after day, not finishing the things I’ve started, not understanding what’s going on around me, and not being able to see that I’m having trouble.

Clearly, I need to transfer some of my positive coping skills — like the ones I’ve used on this non-paying 13-year media project — to the rest of my salary-earning life. I’ve done well for myself. And now I need to do better. And I need to have a more in-depth experience in all of my life — not just the side projects.

I realize that I’ve never gotten really, really invested in my outside work, because outside work is not typically on my terms.  I have to adjust to conditions outside my head which I find difficult, distracting, disorienting, and anxiety-producing. And I have trouble understanding and making myself understood, which is a huge pain in the ass at times, so it adds to the stress. Then I get upset with myself, and then I really can’t think. And it starts the downward spiral. In many ways, I realize that I’ve done less than what I could, because I’ve gotten turned around and confused, and my brain does not like to be turned around and confused. So, it goes on strike. And the rest of me is like, “Oh, I guess I really do need to take a break…” And I quit. Just stop thinking.

In some ways, I’m a very hard worker. In others, I can really slack off. And my little brain can justify slacking — with no problem. It will even take it a step further and tell it/me that it’s doing the opposite of what it’s doing. It tells itself/me that it’s “working on it” when it’s doing the exact opposite — it’s stopped working and has wandered off somewhere to do something else that seems like a lot more fun. And I have to go find it, bring it back to task, and try to catch up to where I was, when my brain stopped trying.

So, I’m working at figuring out how to keep my brain engaged. How to keep it interested. I’ve started planning my work days much more aggressively, like I often plan my own personal projects. I know how to plan — I do it a lot. Thing is, I don’t do it with the activities with other people that actually make me money. I have this “disinvestment impulse” — an inclination to avoid personal investment, to be always ready to abandon ship if it starts to sink —  in work I do for others, perhaps because working for others has been so fraught with confusion and dread and disconcerting surprise screw-ups that I couldn’t explain. And the fact that I’m being paid to do certain things, but mess up all over the place also adds pressure, which exacerbates my symptoms and issues.

How can I reverse this impulse and really get engaged with what I do? A number of things have come to mind that I’ve been doing more actively:

  1. Actively plan my days and break out all my projects into manageable pieces, so I know what to expect and I don’t get overwhelmed.
  2. Write everything down in my notebook and follow my progress throughout the day.
  3. Think about my present work in terms of long-term payoff. See where the skills I’m building now can help me later on down the line.
  4. Think about what this activity will bring me, not only what I bring to it. Let it feed me. Allow myself to enjoy the pieces I can find enjoyable.
  5. Talk to my boss frequently, check in with them, and track how I’m doing.
  6. Think about the next day, the night before, and review what I still need to get done.
  7. Reward myself for jobs well-done.
  8. Pace myself. Work from home a couple of days a week and take breaks when I can. Actually go for walks in the middle of the day.

It’s not a perfect science, but I’m getting there.

And I’m actually learning to enjoy it!

Moment by moment – on mindfulness and TBI

About a year ago, I had a conversation with a friend who was wondering aloud how I manage to get through life with the deficits I described to them. I had just finished telling them about my memory problems, my cognitive processing problems, my physical problems, the troubles I had when I was a kid… I didn’t hold back, but just let it all hang out. And when all was said and done, it was a lot to process, even for me (who’s been living with all that for as long as I can remember).

One of their first questions, when I’d finished, was how the hell I managed to get through life? How did I do it every day? How did I manage to make it through so many “regular” situations… not only adequately, but in fact better than many? For years, I’ve worked in high-stress, high-pressure environments that have one crisis after another. For decades, I’ve experienced job changes, moves from one part of the country to another, serious health problems that felled family members, deaths of close relatives, career insecurities, near-eviction… How did I manage to keep it all together, and actually look even more functional than others, who have not had brain injuries?

It sounded a little hokey when I said, it but the first words out of my mouth were, “Mindfulness. I just pay really, really close attention to each moment as it comes.”

At the time, I wasn’t sure that was really 100% accurate. And when I thought about it, over the coming weeks and months, I came up with a whole bunch of other ideas for how I get by:

  • mimicking others who seem to have it all together
  • being silent instead of speaking up and showing my limitations
  • hanging with good people who care about me and can help me
  • learning to ask for help in ways that don’t make me look stupid
  • learning to be stoic under any given situation, and then falling apart when I’m out of sight of others

The list goes on, of course, and the more I think about it, the more coping strategies I can come up with.

But once I got tired of thinking how else I manage to get by, I came back to my original thought, which was correct:

I get by in the world, head injuries and all, by paying really, really close attention to each moment, and living the very best that I can in that moment.

Throughout the course of each day, countless situations arise which enable me to learn more about myself and be true to that moment.

People approach me for help or input. I can choose to pay attention to them, really get what they’re saying to me, and respond to the best of my ability… Or I can pretend to listen to them, brush them off, and go back to what I was doing before.

People interact with me in stores and public places and at work. I can choose to be pleasant and polite to them, or I can be rude and impatient and make them sorry they ever met me.

Opportunities arise to make choices that will change the direction of my day. Will I dress up for work, or will I dress down? Will I take back roads to work, or will I take the freeway, or will I take the train? Will I slow down when the traffic light turns yellow, or will I speed up?

Every single choice I make through the course of each day has the potential to change my course in good ways or bad. And every action I take is both informed by my neurological profile and affects my personal relationship with my brain. It’s a two-way street. I have to both factor in the issues I have with my broken brain when I decide how to act… and deal with how my perception of myself alters, based on the outcomes of what I chose to do before.   If I neglect the former — e.g., don’t bother to remember that fatigue is a huge issue for me, and it’s impacting my ability to think and coordinate my movements — then the latter can suffer — e.g., I’ll get really down on myself for being dumb or dense or uncoordinated. Even though I know I’m somewhat impaired, I still get down on myself for doing/saying/choosing things that were better left alone. And that takes a toll… like water dripping on a rock and eventually eroding a virtual Grand Canyon through my self-esteem.

Mindfulness matters with me. Perhaps moreso with me than with other folks who are neurologically normal. Because if I want to live my life to the best of my ability, I don’t have a choice, but to force myself to be mindful. When I’m racing through my days, not paying attention to my limitations, not being mindful of where I am and what I’m doing, unfortunate things tend to happen. I rub people the wrong way. I say things I shouldn’t. I get pulled over by cops. I bump into hard/sharp objects and bruise myself. I get snarky with authority figures and alienate my supporters. I tend to end up in hot water, and then I feel just awful. I start to doubt myself. And when I doubt myself and my self-confidence takes a hit, I have a harder time just living my life later on.  Even the most basic activities can become a difficult chore, when my self-confidence has taken a hit… they’re hard enough, as it is, without the added burden of screwed-up self-confidence.

But when I slow down and focus on the present moment… When I’m totally involved — to the best of my ability — in what I’m doing, what someone is saying to me, what is happening around me… When I manage to block out everything else around me and focus wholly on what’s right there in front of me, magic happens. I become involved in my own life. I am able to see, feel, hear, and experience all-round the situation that has presented itself to me. When I can manage to stop the rest of the world from intruding, and I can slow down the action enough to devote my full attention to what’s going on in that moment, at that specific place in time, I can turn the full force of my abilities towards it, and be true to it.

Now, looking around at websites about mindfulness, I’m finding a lot of mystical stuff. Enlightenment stuff. Claims that mindfulness is the path to Buddha-hood. A cure for psychological ills. A cure for the soul. I don’t know about all that. I think that mindfulness is certainly a key part of becoming a fully conscious individual. But in my case, mindfulness isn’t something optional that I add to a personal spiritual practice for the sake of additional help. It’s a central and esential part of my day-to-day coping strategies, without which I’d be totally sunk. If enlightenment comes along with it, then great. But I’ll settle for basic functionality.

And that’s exactly what it offers me. Because when I’m not paying attention, when I’m not cognizant of the fact that I’m overly tired, when I’m ignoring the fact that I’m getting more and more agitated, bad things happen. I lose my cool. And when I lose my cool, I blow up. When I blow up, I say things I don’t want to be saying. I say things I don’t really mean. I break things. I throw things.  I flip. Trust me, it’s not pretty. And people close to me are occasionally afraid of me, which does not feel good. Ultimately, I start to close down, shut people out, stop communicating with them, start to get down on myself… and I slide down in that sinking spiral… sometimes into total and utter despair. The cost to myself and those around me is very high, when I’m not being mindful and paying attention to what’s going on with me.

But when I am paying attention and I’m aware of where I am and what’s going on with me, I can manage my limitations. I can see that I’m tired, and take a nap. I can see that I’m not following what someone is saying to me and either ask them to clarify or make a note (a real note on paper, ’cause I’ll forget mental notes). I can tell that my attention is wandering and bring myself back to the moment. I can see that I’m starting to lose my cool for no good reason and physically remove myself from the situation – walk away or even run, do something different, or just stop talking. I can prevent myself from going off the deep end and overreacting to what others are doing and saying. Just reminding myself that I’m  being “very TBI” at the moment chills me out. I can remind myself that my brain is misbehaving and I’m probably getting overwrought for no good reason. And I can stop the downward slide before it starts.

I cannot even begin to say how important this is. For myself, and for everyone around me. It means the difference between being a good partner and being a vexation (and sometimes a threat) to the ones I love. It means the difference between having a conversation and having a fight. It means the difference between finishing a thought and taking a definitive action, and getting mired in bogus details that keep me from going anywhere. It means the difference between being a TBI victim and a TBI survivor.

Mindfulness is not just an optional practice for me. It’s not something I can do now and then, when the spirit moves me or I’m in a meditation session. It’s something I absolutely positively must do all the time, in order to meet the most basic requirements in my life.

The beauty part is, because mindfulness is such a powerful practice outside of basic coping, it enables me to do the most basic things with tremendous focus and energy. Taking one small thing at a time, focusing fully on one moment at a time, allows me to use the full range of my abilities on that thing, in that moment.

And in so doing, my life becomes more than just a series of limitations to be dealt with. It becomes more than just a sequence of chores and tasks and obligations. It becomes more than work, work, and more work. My life — through mindfulness — becomes a form of worship. It becomes art.

Back to tracking my TBI recovery

Okay, so now I’ve take care of these “housekeeping” items:

  • I’ve squared away my job situation — I’ve gracefully exited my last position and am ramping up for my new one
  • I’ve gotten clear on my future path — keep my skills up and learn-learn-learn
  • I figured out my transportation into work each day
  • I’m sorting out my weekly therapy/appointment schedule
  • I’m in the habit of getting regular naps
  • I’m paying closer attention to my eating habits
  • I’m exercising a little bit each day, including stretching which is so important

And I’m ready to get back to the nitty-gritty of tracking my daily progress with all my TBI symptoms.

I have made some changes to my self-assessment grid, and I’m printing out copies of it to track my daily situation.

I also wanted to share with you a self-assessment ‘questionnaire’  to track how I’m doing from day to day. I pulled together as many symptoms of TBI as I could find from different websites, and I put them into a format that is helpful for me, and I’ve been using my self-assessment form, on and off, over the past year or so . I have found that when I am actively tracking my immediate situation, I’m better able to monitor and manage my situation. I track whether or not things are “up” with me, what they’re like, the level and impact to my daily functioning, what I do about it, and whether it works or not. Then I have the information on-hand to refer to later, when I run into trouble.

Interestingly, I have found that phrasing the criteria a specific way makes it easier for me to self-assess. A lot of these issues have been persistent and intrusive with me for as long as I can remember, but I couldn’t see they were there, because I wasn’t looking for them specifically. But I found that actually identifying them specifically and asking myself directly if they applied to me at that time made it much easier for me to identify them. Saying “I’m angry!!!” versus just checking off the “Anger” box, which I’ve seen on some websites, makes it more immediate, and I get an instant Yes or No response to it. It also keeps me honest.

When I first started self-assessing some time back, I had a lot of varied and detailed information to fill in, but over time I’ve become better at sorting through things. I think that’s perhaps one of the reasons I’ve been doing better over time. I’ve been actively practicing looking at my situation and organizing what I find.

Now, I find my issues are less “colorful”, but they are still persistent. Unfortunately, I have not been doing as much self-assessment as I should in the past months, and I can tell a difference in my self-confidence and my anxiety levels. But that is changing. Now I have my daily schedule almost in place, and I can block off time to do this self-assessment work at lunch in a quiet location near my office (but not in it). So that’s good.

I just need to make the effort. And so I shall.

I guess one of the reasons I had left off tracking my progress, is that I got so upset and bothered about things never getting completely better. I’ve been doing better about my agitation and my temper issues, as well as my interpersonal relations, but the problems never disappear 100%. They are always there in the background, and their constant presence depresses the heck out of me.

It’s just really tough, sometimes. I don’t want to be unwell. I don’t want to be so volatile. I don’t want to have so many issues. I want this all to get better and go away. But it’s not. Still, if I can’t keep track of myself and work on all this, it really gets hold of me and derails me, which is so not-good, I can’t even begin to say. I’m in a new job, and I can tell my issues are rearing their ugly heads again. I have to do something. So I’m going to start self-assessing regularly. And avail myself of my neuropsych therapist who knows about this stuff and may be able to help me sort through it all.

So, I’m going to just bite the bullet and start tracking myself. I can take time out during the day — over lunch and/or over morning and afternoon breaks. I also have time on the train to self-assess, so that’s good. I just really need to do it, because my problems with not being able to initiate/get started on important things, my tendency to just sit and not want to move, my bad habit of isolating and withdrawing, and my disorganization are all starting to take a toll on me. And I’m only two weeks into the job.

I need to get a grip on this. Do the work-work, yes, and do the self-work, too. I cannot and will not be sidelined by this TBI stuff. I still have a lot to offer and accomplish, and I have tools to help me do it.

Self-assessment is one of the most powerful (and freely accessible) tools I have.

So, I must use it.

The lessons of the lost keys

I lost my keys yesterday. As in, I couldn’t find them. I knew they weren’t lost, since I’d driven home from my evening appointment and I’d gotten into the house. But I could not for the life of me reconstruct about an hour of my life, the night before.

Folks who don’t know about brain injury love to tell me that losing your memory is just part of getting older, but my memory is worse than that of a lot of people I know who are 15-20 years older than me. It’s not just old age that’s the culprit. I’ve got larger issues that defy some pat explanation.

I easily could have gone ’round the bend with losing my keys – my car/house/post office box/work cabinets/computer lock keys, plus the rewards program tags that give me discounts at certain stores. I need them. I really, really do.  And I’m usually really good about putting them back on the keyholder on the wall beside the door, but that fateful night, a few days back, I didn’t — and the break in predictability really threw me for a loop.

But last night after starting to lose it over their disappearance, I realized this was a lesson I needed to learn. I needed — apparently — to figure out how to do something that was non-routine. So, I buckled down and searched high and low and find them. I started upstairs, making my way through all the rooms on the first and second floor — all the surfaces I might have laid them down on, all the odds and ends (the mail, a newspaper, books from work, a stray jacket, etc.) I might have laid atop them. I went through the house twice, feeling this panic rising…

Then I remembered… I had a second set of keys, so even if I never found my first set, I wouldn’t be dead in the water. With plain old common sense, I had separated out all my double keys and put them in the official key-holding place in the kitchen, as well as in a zippered pouch in my knapsack. So, I had backups, in a worst-case scenario.

A good thing, too. I was starting to get increasingly agitated and panicked, my mind racing and becoming harder and harder to control.

Remembering I had a backup set of keys really took the pressure off. I found myself suddenly able to think. And relax. And get creative with my search.

And I started to get ideas… I ran through the pockets of my knapsack, shaking it to see if I could hear keys jangling. Nope. Nothing there.

I went into the garage and checked around the car — maybe they had fallen out of my pocket when I got out. I doubted it, since I probably would have noticed the sound of falling keys, but I thought I’d just check. But no dice.

I went back upstairs to clear my head, clean up the kitchen, help pick up around the house, and get read for bed. I kept trying to remember what I’d done the night before. Where had I gone? What had I done? I couldn’t for the life of me remember what I had even done the day before. So, I checked my calendar. And I remembered that I’d been at an appointment, and I’d had my second laptop with me. Maybe I had put my keys in my other laptop bag.

I ran upstairs to check. I went through all the pockets and gave the bag a shake to see if I could hear keys. Again, no dice.

I had another thought — again about the car. Maybe I had locked them in the trunk. I have been known to put my keys down in the trunk of my car, which is a terrible habit I need to break. I ran to the garage and checked — again, they weren’t there. But as I closed the trunk and turned to go back in the house, I looked over at a nearby surface, and lo and behold, there they were. I suddenly remembered that because I’d had two bags to carry the night before, I’d needed to lay my keys down. And I’d forgotten to pick them up again. All it took was 30 seconds of doing something other than holding my keys… and probably thinking about things that had nothing to do with going into the house… for all thoughts of my keys to vanish from my brain.

Bummer. I don’t much care for this crappy working memory stuff. I’ll have to see if I can get some help with it. Or come up with some compensatory techniques.

What I learned was this:

  1. Always have a backup — whether it’s a plan or a second set of keys. Don’t put all your most valuable useful objects in one place, but spread extras around in different places, so one stupid move doesn’t wreck your life. Have more than one “point of failure” — keep a second set of keys in a safe place that you can remember.
  2. Don’t panic — it doesn’t help, in fact it hurts. When in doubt, relax and do something different, and take your time letting inspiration show up.
  3. Keep a calendar/notes — it helps track events for future reference, when your memory fails you.
  4. Always double-check to make sure things are in order before finishing up the day — that way, I won’t have unwelcome surprises the next morning that throw me off. And I can fix things I’ve “broken” on the same day I’ve messed up… when I can still remember what I was doing a few hours earlier.
  5. Use the body as well as the brain — because the physical retracing of my steps, going to the car and going into the trunk like I had the day before, jogged my memory just enough to get me to look over at the place I’d laid my keys.

This last point is particularly helpful for me. When I’m tired — which I was last night — and my brain isn’t working properly, if I just physically go through the steps I took just before my memory clipped out, my body can cue me to look around for clues, or even “remember” what I was doing at the time my brain can’t recall. Until I went out the car and opened the trunk and went through all the motions I’d gone through the day before — opening the trunk, and then closing it — that few minutes when I’d laid my keys down was in accessible to my brain’s memory. But it was still in my body’s memory.

So, I did learn some valuable lessons. And I did find my keys. Thank heavens. As soon as I had them in hand, I marched into the house and hung them up where they belong. And I put the extra set of keys back in its proper place, where they should have  been, all along.

What I did right this past week, and what I did wrong

I just started my new job this past Monday — it’s pretty wild. The last job I had was relatively mellow, low-key, and it didn’t make a lot of demands on my cognitive/behavioral or technical skillsets. It was a great job to have, while trying to figure out what is up with me, get my bearings, develop some coping strategies, get a eagle-eye view on what my biggest issues are and how I can deal with them.

It was like working in a laboratory — a somewhat academic environment where results weren’t the biggest concern… just that you were looking busy.

Now the rubber hits the road. My working vacation is over. The easy-going, no-problem, whatever/whenever environment I was in for nine months is gone, baby, gone.

This new job is pretty intense. It’s in a very high-pressure sector, where the work is so very critical for so many reasons, organizational restructuring is a recurring phenomenon, business is down from where it was a couple of years ago, and everyone still has to perform at peak. All the time. No loosey-goosey leeway, here. It’s balls-out, full-on go-go-go all the time.

What was I thinking, going after this job? Am I nuts?! I hear myself echoing the sentiments of NEDream, who (if I remember correctly) has talked about feeling like they took on too much when they started a Masters program.

That’s how I’m feeling, right about now. The job changing process was just exhausting for me — lots of intense emotion, figuring out money and insurance and transportation… just trying to see if it even made sense for me to try it. It totally makes sense for me to give it my best shot. That much I know. But now I’m just fried after the first intense week on the job.

The best part of the job is that I’ve worked with these folks before and they know the quality of my work.

The worst part of the job is that I’ve worked with these folks before and they know the quality of my work.

Nobody there knows that I sustained a brain injury in 2004, that I flamed out in 2005 for very good reason (no, it wasn’t just the stress that drives so many veterans there off the deep end), and that each day has its own share of real struggles to get along.

I struggle with sustaining my attention — which makes learning all this new information very arduous.

I struggle with understanding what people are saying to me — which makes productive interactions more difficult.

I struggle with keeping my cool — which makes me nervous. Very nervous indeed.

I struggle with fatigue — when I get too tired, I’m unable to rest and relax, which is a real problem.

This is not all bad. In fact, it’s good. It’s good that I’m aware of this, that I’m consciously tracking it, that I know these things — and more — are real problems that can derail me. If I know about it all, I can do something about it. And there I’m much more ahead of the game than I was, even a year ago.

The main thing that got in my way, before I fully realized the impact these head injuries have had on me, was not knowing there was something wrong. Once I got that piece of the puzzle, I was able to start rehabbing myself. Which is what I’ve got to do. Because if I go public with my condition, my job will be in jeopardy, my livelihood will be threatened, and I could lose my house, my home, my dignity… everything that matters to me and I’m not willing to lose.

This is a new chapter with me — a time of aggressively and actively managing my limitations, so that I can get on with my life and restore the things I’ve lost. Some of what’s gone isn’t coming back. I may not be able to rehab myself all across the board. But dammit, I’m going to do my utmost to compensate for what I can’t fix, and do what I can to avoid disaster if there’s something that can’t be fixed and can’t be compensated for.

So, that being said, what did I do right last week, and what did I do wrong, and how can I do better next week?

Let’s start with the bad news, first…

What I did Wrong

  • I started to freak out. I got completely overwhelmed a couple of times with everything that was going on around me. I could feel panic welling up in me — What was I thinking, taking on this new job?! I’m impaired in some significant ways, and I have no business doing this type of work again. Didn’t I learn my lesson before?! I almost got taken over by it a couple of times. Fortunately, I was able to pull back from the brink — mainly by focusing on how fortunate I am in these times of radical change and locking my attention on being intensely grateful for the votes of confidence from my new co-workers.
  • I drove to work on my first day. I made the mistake of taking one of the main routes into town on Monday morning, and I ended up spending nearly 2 hours in traffic — each way. It was just insane. I barely made it to the office on my first day by 9:00 a.m. If I’d taken the train, I could have been there by 8:30 and not rushed myself. Only after I’d been fried by the morning commute, did I learn my lesson.
  • I got way too tired. I am so exhausted, right now… I’m really feeling the burn of the commute and the new situation and the pressure, so I’m having a hard time settling down and chilling. I feel so intensely driven — to prove myself, to do the best that I can, to not get dragged down by my brain, to be a responsible team member, to contribute. I still have to figure out my daily/weekly schedule, and I need to develop stress management techniques and ways to get to bed earlier. I am just so tired… I know it’s going to take me a while to adjust and get back to where I can rest again, but I’ll get there.
  • I started to slide back into negativity. By the end of the week, I’d been through a couple of fire drills and emotionally charged meetings, and I started to get an attitude towards the end of Thursday. I so totally cannot afford to do that. In the past, I’ve slipped into it all too easily. When I was a kid, struggling with TBI difficulties, I was prone to be very negative and angry and bitter. I can’t afford to do that now. I must keep positive, and I cannot allow myself the luxury of negativity.
  • I lost track of what I was supposed to do. In all fairness, I was pretty overwhelmed, apprehensive, fatigued, and turned around, so it’s logical that I would forget to do my banking and do some things backwards — like spend money in an account before I moved enough money into it to have a really wide margin of safety. I’m in the black, and I’m not in danger of overdrawing my accounts, but I still need to do things in the right order — move a couple hundred dollars to a new location in time to pay my monthly oil bill — so I have a margin of comfort and don’t add more stress to my situation.

What I did Right

  • I paced myself. I didn’t constantly fly into all my new tasks like some cowboy, running willy-nilly all over the place, trying to prove how together I was. I did catch myself going there a few times, but I was able to stop myself before I went overboard. I made lists of the things I needed to get done — get my computer up and running, change the configuration, talk to certain people, reconnect with old friends and co-workers, and get the lay of the land, politically speaking.
  • I took the train the rest of the week. I learned my lesson about that morning commute. After Monday, I took the train. I drive 20 minutes to the closest stop, and the train drops me literally next door to the building where I work. I can’t go wrong, there. I also bought myself a multi-ride ticket, so I won’t have to keep coming up with a fistful of dollars on each ride.
  • I took time off and took naps when I could. Part of the reason I took this job is that I can telecommute as much as I like. My boss literally told me they don’t care where I am, so long as I’m getting my work done. I had two days at home, last week — one of them Good Friday, which was a holiday, that I worked, anyway. I took one nap on the day I was home earlier in the week, and I took two naps on Friday. I’m really feeling the burn of the commute and the new situation and the pressure, so it’s going to take me a while to adjust and get back to where I can rest again, but I’ll get there.
  • I got some audio help. I listened to Belleruth Naparstek’s Stress Hardiness Optimization CD before one of my naps yesterday, to help me better manage my stress and acclimate myself to it. This CD has guided imagery and affirmations to help people in high stress situations get in touch with their physical condition, manage their stress levels, and train themselves to relax and get to sleep. I had gotten the CD a couple of years ago, and had listened to it periodically when I first got it, but now it’s even more important than ever. Plus, I downloaded The Destress Kit from the Institute of Heart Math. There’s audio and a PDF that come with it, and it’s free of charge, which is helpful in these challenging times. The audio is basically a read of the PDF — whichever way you like to “consume information”, by listening or by reading, you can get the important ideas a couple of ways. I’ve give the audio a quick listen, and it has some helpful info in it. I’ll have to listen again when I’m at work.
  • I reached out for help. I was getting all turned around on Thursday afternoon, starting to feel overwhelmed and overwrought, and my team were all workggn remotely, so I started to spiral downwards. I gave a buddy of mine a call and we had coffee, while I just talked through my thoughts about the job I’m supposed to be doing. It was really good to do — and it saved my ass bigtime. Plus, my buddy — whom I had actually trained, back about 12 years ago, when we were working together really, really closely — got to contribute their own insights and wisdom after years on the job. It had a nice symmetry to it, and I’ll definitely keep that connection going. It’s an important one.
  • I made lists and planned ahead. I have been more actively keeping my daily minder, making notes of what I need to do and following up with the really important stuff. I’ve also just sat down and thought through things that are really important for me to do — like finishing my taxes and getting my hair cut and buying some supplies to help me not eat and drink junk that fries my system. I can quickly reach for crap that’s full of sugar and salt and MSG and other preservatives that gunk up my system. I really can’t afford to go there. Not on this job. My success depends entirely on my peak performance, so I have to take care of myself.
  • I learned and learned and learned some more. The new job I have has a lot of custom coding involved in it. There are some fundamental skillsets I have to have, there are some advanced skillsets I have to have, and on top of that, I have to learn the ins and outs of these custom components we’re building. Talk about freaking out… It’s a whole new ballgame, totally different from what I’ve been doing for the past couple of years — much higher-level stuff. I figured I have two choices — I can either flip out, freeze, and choke… or I can dig in and learn, learn, learn some more, till I’m comfortable enough with the material to really start contributing. I just hate this feeling of being “behind” — I know it’s normal for starting a new job, even if I’ve worked with these folks before, but I hate the feeling of being a newbie. So, I’m doing something about it.

All in all, it was a highly successful first week.

I didn’t freak out and lose it on the people I live with.

I didn’t blow up at people I work with.

I didn’t piss anyone off.

I got to work when I needed to and made some good headway.

I managed to fit a few naps in.

I’m still standing. A bit fried and still rather befuddled and off-kilter, but I’m still here.

That’s the most right thing of all.

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