Doing it differently this holiday season

I did something quite unusual last night — I went Christmas shopping by myself at a much slower pace than usual. I didn’t manage to buy everything I set out to, but I got everything I could, and I got through the experience in one coherent piece — and I was able to get my nap after I got back.

Normally, this time of year is marked by team-shopping with my spouse. They contact everyone in the family and find out what people want… or we talk about what we think people want, and then they make up the list. We take the list, hop in the car, and head out to stores that look like good candidates, then we slog through the process of elimination, muddling our way through… with me getting so fried I either completely shut down and become non-communicative, or I melt down and fly off the handle over every little thing.

We usually spend several evenings like this, ’round about this time of year, and we’ve both come to dread it a little. My meltdowns had become more extreme over the past few years, and this year we were both really dreading the whole Christmas shopping business — to the point where we are going to be late(!) with presents for family members in other states. That’s never happened before. We were always good about it. But my meltdowns screwed everything up.

We both recognize that doing a lot of social things, this time of year (when work is actually getting more crazy, what with year-end and all), takes a huge toll on me. Even if it’s with friends (especially with friends), all the activity, all the interaction, all the excitement, really cuts into my available energy reserves. And then I get turned around and anxious… and I either regress to a cranky 9-year-old state, whining and bitching and slamming things around… or I melt down, start yelling, freak out over every little thing, and start picking at my spouse over things they say and do, to the point where neither of us can move without me losing it.

What a pain in the ass it is. Of all things, the uncontrollable weeping bothers me the most. The yelling bothers my spouse. It’s embarrassing for me and frightening for them, and neither of us has a very Merry Christmas, when all is said and done.

So, this year we did things differently.

We split up for the day and took care of our respective activities.

My spouse went to a holiday party that was thrown by a colleague of theirs who’s married to an attorney who deals with financial matters. I was invited, too, but we both realized that it would be pretty dumb for me to try to wade into the midst of 50+ actuaries and tax attorneys and their spouses who were invited to the shindig… and try to hold my own. Certainly, I can keep up with the best of them, but marinating in such a heady soup, especially with everyone hopped up on holiday cheer (eggnog, red wine, punch, etc.) and all animated and such, would have been a recipe for disaster.

So, I didn’t go. Instead, I took our shopping list and headed to the mall to stock up on what our families had requested. We had written down in advance all the names and the specific gifts we were going to get, and we had also written down where we were going to get them. That list was my lifeline. Especially in the rush and press of the mall, which sprawls out in all directions, with satellite stores on either end.

I’m happy to report that I actually did really well. I made a few tactical errors — like not parking in the first lot I came to and walking in. But that turned out okay, because if I had parked in the first lot, it would have been all but impossible to get down to the other end of the mall. I studied the list carefully ahead of time and used a highlighter to mark the stores where I’d be going. I also kept my focus trained on the task at hand — even if it was just sitting in traffic. I also walked a lot more this year than other years. I found one parking space and used it for two different stores. And I didn’t hassle with finding a space that was as close as I could get to the building. I took the first decent spot I could find, and then I walked to the store.

Imagine that — in past years, I was possessed with finding parking as close as possible, and I would move the car between stores, even if they were only 500 yards apart.  This year, I just walked the distance. Even though it was cold, for some reason the cold didn’t bother me, and it actually felt good to be out and moving.

I think that my 5 months  of daily exercise has paid off, in this respect. I think part of the reason I was always consumed with driving everywhere was that I just wasn’t physically hardy. I was kind of a wimpy weakling, in fact — though more in thought than in body, but a wimply weakling, all the same. But having a good physical foundation — even just from doing an hour (total) of cycling, stretching, and light lifting each morning — has made a significant difference in my willingness and ability to walk between stores.

It might not seem like much, but the walking (instead of driving) between stores part of the trip actually made a huge difference in my overall experience. Walking between stores — stopping at the car on the way to stash my presents — helped me break up the activity and clear my head. It got me out of that in-store madness, the crush and the rush, and it got me moving, so I felt less backed-up and agitated. And that let me start fresh at the next store.

That was good, because the first store was a friggin’ nightmare. It was one of those big-box electronics places, that supposedly has “everything” but really didn’t. It was exhausting, combing through the stacks of movies and music, only to find everything except what I needed. The lighting was awful — extremely bright and fluorescent and glaring. People kept bumping into me, or walking so close I thought they would run me down. But the worst thing was the acoustics. Everything surface was hard and echo-y and the place was overwhelmingly loud, and every single sound was at least partially distinguishable, which drove me nuts. I’ve noticed that acoustics have a lot more impact on me than light, when I’m out shopping. The store was one big cauldron of loud, indiscriminate noise, and my brain kept trying to follow every sound to see if it mattered. I couldn’t function there. Not with the place full of people — and very agitated, anxious, aggressive people, at that.

I eventually went with a gift card and got the hell out of there. I doubt I’ll ever go back when it’s that full. When the place is low-key and all but empty, I can handle it much better. But at this time of year? Not so much.

Walking back to my car chilled me out. Sweet relief.

At the second store — a bookstore — I started to feel pretty overwhelmed. They had long lines, and the place was packed — which is good for the retailer, but not so great for me. I spent the longest amount of time there, in part because I could feel I was getting overloaded, and I stopped a number of times to catch up with myself and remind myself what I was there to buy. My list was getting a little ragged, at that point, what with me writing notes in the margins and taking it out/putting it back in my pocket. So, eventually I just pulled it out and held onto it for dear life. I must have looked a little simple-minded, but I don’t care. Everyone else was so caught up in their own stuff, anyway. My main challenge there, was not getting trampled by Women On A Mission — many of them carrying large bags and shopping baskets that doubled as ramrods to get through the crowds.

One cool thing happened, though, when I was taking a break — I had a little exchange I had with two teenage boys who were talking about some book they’d heard about. I was just standing there, pretending to look at a shelf of books, just trying to get my bearings, when I hear this one young guy tell his buddy, “I heard about this book I should get — I think it’s called the ‘Kama Sutra’ and it’s, like, about sex, and it’s got these pictures… and it’s really old… like, from India or something.”

Well, I perked up at that, and suddenly very alert, I looked over at them and said, “Oh, yeah — the Kama Sutra, man… You should definitely check it out.”

They kind of looked at me like deer in headlights, and they got flushed and flustered and stammered something about not knowing how to find it. It was about sex, and they didn’t know how to ask someone to help them. I so felt their pain…

I confidently (and confidentially) pointed them to the book-finder computer kiosk, where they could type in the title and it would tell them where to find it in the store.

“Dude, you should totally look into it. It’s got lots of information — and pictures — and it’s been highly recommended… for hundreds of years.”

They got really excited and headed for the book-finder kiosk. Here’s hoping they — and their girlfriends — have a very Merry Christmas.

That little exchange got me back in the game, so I took another look at my list and managed to find the handful of books and music and calendars I wanted to get. I headed for the line and just chilled/zoned out. I didn’t get all tweaked about how long it was taking; I listened in on a conversation for a while, till I realized it was mostly about death and health problems people were having.

Oh – and another thing that helped me keep my act together, was the 4:15 p.m. alarm that I have set on my mobile phone. 4:15 is usually when I need to start wrapping up my day at work. I need to do a checkpoint on the work I’m doing, start to wind down, and begin keeping an eye on the clock, so I don’t get stuck in town past 6:00, which is what happens to me when I don’t watch my time after 3:30 or so. I have this alarm set to go off each day, and it went off while I was in the store, which was a blessing. I had completely lost track of time and I was starting to drift, the way I do, when I’m fatigued and overloaded and disoriented.

It startled me out of my fog, and I knew I still had a bunch of things on my list to get, so I refocused and started thinking about what I would get at the next store, so I could just march in and do my shopping without too much confusion and disorientation. After I paid for my books and music and calendar, I debated whether to have my presents wrapped for free, which might have saved me time in the long run. But I couldn’t bear the thought of having to interact with the folks who were doing the wrapping. They looked really friendly and gregarious — Danger Will Robinson! Warning! Warning! Even a friendly conversation was beyond me at that point.

I realized I just wasn’t up to that, and I must have looked like an idiot, standing there in the middle of the foyer, staring at the gift-wrappers for about 10 minutes, but who cares? Everyone was so caught up in their own stuff, they probably didn’t notice me. And if the gift-wrappers were uncomfortable with my staring, they didn’t show it… too much 😉

Anyway, after I managed to extricate myself from that store, I headed for my last destination. Again, I didn’t sweat the traffic getting out of the lot, and when I got to the final store, I parked at a distance from the front doors and walked in through the icy cold, which was good — it cleared my head.

Inside, I consulted my list again and headed directly for the section that had what I needed. Halfway there, I remembered that I’d meant to buy a very important present at the first store, but I’d totally blanked on it. I started to freak out and got caught up in trying to figure out how to get back to that first store and not lose my mind in the process.  Then, I slowed down and stopped catastrophizing, and in my calming mind, it occurred to me that — Oh, yeah — they probably carried that item at this store, so I went and checked, and sure enough, there it was – score! I didn’t have to back to big-box hell. At least, not that day.

I found some more of the presents on my list, and although I didn’t get everything I needed, I made a decent dent. My partner can come with me and help me sort out the other items either today or tomorrow. Or possibly when we get to our family — they usually have some last-minute shopping to do, and they can cart us around with them. And I won’t have to drive.

By the time I got home, I was bushed. My spouse wasn’t home yet, so I called them — they were on their way home and were stopping to pickup some supper. I said I was lying down for a nap, and they didn’t have to wake me when they got home. Then I took a hot shower to get the public germs off me, laid down, and listened to Belleruth Naparstek’s Stress Hardiness Optimization CD. I had a bit of trouble relaxing and getting down, but I did manage to get half an hour’s sleep in, before I woke up in time for dinner.

My partner had a pretty good time at the party, but they said it probably would have been a disaster for me — so many people, so much energy, so many strangers, and unfamiliar surroundings. I concurred, and I showed them what I’d bought that afternoon.

We’d both done well. We both missed each other terribly, but we did get through the afternoon without one of those terrible holiday incidents that has dogged us for many, many years. Like Thanksgiving, which went so well, this Christmas shopping trip actually felt normal. It didn’t have that old edginess that I always associate with holiday shopping. It didn’t have the constant adrenaline rush. In some respects, it feels strange and unfamiliar, but you know what? If strange and unfamiliar means level-headed and low-key and plain old sane, and it means I can keep my energy up and pace myself with proper planning… well, I can get used to that.

Yes, I’ve done things differently this year. And it’s good.

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I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

In search of consistency

One of the things about TBI that makes it so maddening is that it strips you of regular functionality without ever bringing the fact to your attention. In fact, if anything, a brain injury is expressly “interested” in keeping you from knowing that you are impaired.

The brain doesn’t want to believe that it is having problems. The brain doesn’t want you to believe that you’re having problems. It’s like there’s this inherent mechanism that STOPS THINKING as soon as it encounters something threatening. It’s like the very experience of hesitation or trepidation short-circuits the rational faculties of the brain with a cascade of fear-chemistry, and it automatically shifts gear away from the parts that scare it. And you end up never realizing the degree to which you are actually impaired.

Until everyone else around you gets tired of your issues and lets you know. But even then, it can be all but impossible to get your head around what they are telling you. Because despite all evidence to the contrary, your brain is telling you YOU’RE FINE! EVERYTHING IS HUNKY DORY! WHAT- ME WORRY?! NO WAY!

And everything goes to hell (or almost does) before you ever notice.

That’s what happened to me. And in my case, the situation was even more dire, because everyone around me totally bought the cover I’d been using for as long as they’d known me — that I was fine, just a little eccentric, just a maverick/rebel — and they didn’t pick up on the problem spots. Perhaps also in part due to the fact that a lot of my friends have also sustained head trauma in the past (?)

Anyway, now I know I’ve got issues, and I’ve got professional help both identifying the problems and coming up with solutions.

One of the areas where I’m trying to get my house in order, is with regard to consistency. I’m really good at coming up with a plan of action and sticking with it for a few weeks, then I fall off my own wagon, so to speak, and I end up wandering aimlessly, not tending to the things I need to be tending to. I make people crazy, including people I work with. And I’m tired of doing this.

I’ve been keeping a daily planner/log for quite some time, but only lately have I really focused on making sure that I both identify things I’m going to do AND identify the amount of time I’m going to spend on them AND track the results. I have spent the last month or so logging the things on my plate, and then looking back at what I’ve accomplished, and marking off the things that worked out, and the things that didn’t.

And it’s helping. In the past, I would just write down a bunch of stuff I knew I needed to get done, and then just take them piecemeal, or in sudden rushes of activity, or just whenever I felt like it. I didn’t have a lot of discipline around it all, because (I told myself) I was an “artist” and I was too creative to be stuck in some time-management grind, day in and day out.

Well, being creative and an artist is all well and good, but it’s a pretty crappy way to get anything done. Especially if I’m going to be working at a truly professional level and keep my career moving in the right direction.  If I’m going to be able to do jobs that entail a certain amount of responsibility, and if I’m going to get out of a line of work that depends heavily on being project managed by others (allowing me to manage myself), I must develop the habit of consistency, and doing the things I promise I’m going to do, when I promise I’m going to do them.

So, that’s my thing, now. That’s my intention. I am spending time each day scoping out my day, and I spend time after the fact, recapping what I’ve done. It’s a lot more planning and assessment than I am accustomed to doing, and it’s been a real challenge at times. But this is non-negotiable. If I am going to live the life of an adult, rather than as a dependent child (and relying on constant supervision at work is a form of childish dependency), I’m going to have to bite the  bullet and just buckle down and do the work of managing myself. Actively, intentionally, deliberately. Consistently.

Either I swim with this, or I will sink. It’s that simple, really.

Duty to Warn: The Fort Hood Murders/Suicide and the Taboo Question

The Baltimore Chronicle has an interesting article by Gary G. Kohls, MD about the role of psychiatric medications in the Fort Hood incident. From the article:

Most of us have been listening to the massive, round-the-clock press coverage of the latest mass shooting incident at Fort Hood, Texas. Seemingly all the possible root causes of such a horrific act of violence have been raised and discussed. However, there is an elephant in the room, and it’s something that should be obvious in this age of the school shooter pandemic.

We should be outraged at the failure of the investigative journalists, the psychiatric professionals, the medical community and the military spokespersons who seem to be studiously avoiding the major factor that helps to explain these senseless acts. Why would someone unexpectedly, irrationally and randomly shoot up a school, a workplace or, in this case, an army post? Why would someone who used to be known as a seemingly rational person suddenly perpetrate a gruesome, irrational act of violence?

The answer to the question, as demonstrated again and again in so many of such recent acts of “senseless” violence, is brain- and behavior-altering drugs.

You can read the rest of it here.

I can see his point, and I think it is a good idea to factor in the potentially dangerous effects of psychoactive drugs. But I also believe there are many layers to this, the effect of drugs being only one of them. Something(s) else contributed to pushing the shooter to that point. And I’m not sure we can fairly lay all the blame at the feet of the pharmaceuticals industry.

Whatever the cause of the rampage, this issue of pharma-gone-bad is of particular interest to me, because as a multiple-TBI survivor with a bunch of cognitive-behavioral issues, it could be all too easy for a “qualified” doctor or neurologist or psychiatrist to load me up with a bunch of pills and send me on my way. I consider myself unbelievably fortunate and blessed to be working with a neuropsychologist who is very wary of pharmaceuticals and approaches them as a last resort, when all else fails. They are also very happy when I come up with alternative solutions to my issues that work well and do not involve drugs —  like exercising regularly as an antidote for fatigue and drowsiness and a way to wake up fully in the morning.

Interestingly, my psychotherapist tends to come down on the side of drug therapies for individuals with attentional difficulties. I may have to cut them loose, if they turn out to start pressuring me to resort to drugs. If they so much as start hinting at me using them, simply because other approaches “don’t appear to work as effectively” I may have to have to reconsider working with them and seek help elsewhere. Who knows? I may even cut out the psychotherapy completely.

Hard to say, at this point. I think it’s been helping me in some ways… no, I’m pretty sure it has.

But I have been growing a little more leery of my shrink, over the past month or so. They seem more distant than they did at the start. They also have said some things to me over the past couple of sessions that don’t sit right with me, but I haven’t actually followed up on. I should probably do that, to clear the air. It’s hard for me to spend the time and money with someone who I think doesn’t believe me, or seems to be insinuating that I’m misrepresenting my difficulties to the rest of the world. I’m not sure if they think I’m worse off than I appear to be, or if they are just having a hard time, themself.

To be fair, they did suffer a devastating personal loss, last year about this time, so I think it may be messing with their head a little bit. They have definitely not been at their best, of late. So, I’ll cut them some slack, give it some more time, slow things down, and not let them pull any punches with me. We’ll see how it goes.

Bottom line (if there is one) is… mental health care providers can have problems, too. And those problems can get to them in some pretty serious ways.  I’m just glad my shrink isn’t trained in small arms — I’m assuming they aren’t — and that they don’t work in an environment where the use of firearms is part of the job.

A good sturdy kick in the behind

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

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

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

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

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

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

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

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

Good grief.

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

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

Or compensating for them.

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

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

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

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

And now that pattern needs to change.

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

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

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

From the GBO Material:

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

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

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

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

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

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

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

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

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

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

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

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

Again, from GBO:

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

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

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

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

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

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

Onward.

Building my cognitive-behavioral exoskeleton

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

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

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

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

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

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

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

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

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

  • My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.
  • If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.
  • It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.
  • My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace, out

BB

Vacation’s over… thank heavens

Funny, how the seasons go…

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

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

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

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

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

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

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

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

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

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

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

It was like my brain went on vacation.

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

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

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

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

Yes, I’m back…

Well, that was interesting…

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

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

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

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

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

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

I do love the work, so yes, I’m back.

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

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

First, there are basic survival issues at stake.

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

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

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

More on this later…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Harnessing the force of habit

I’ve been giving a lot of thought, lately, to how I’ve managed to make my way in the world and do such a damned good job of it (if I say so myself). Despite a bunch of MTBI’s (some of which have nearly wrecked me) I’ve somehow figured out how to get on with my life and rebound after the fact. I know that people do recover from TBI, but so much of the literature I’ve read talks about how they just never get back to where they were before. I hear people talking about it, too, and to be honest, it can be a real downer at times. My heart just goes out to folks who get lost along the way and don’t have any help finding their way back.

I can definitely tell that I haven’t gotten back to where I was before my last accident in 2004. My thought process has slowed considerably, and my memory leaves a lot to be desired. My moods are more intense and precipitous, and my tendency to lash out verbally has amped up a lot more than I like.

Yet, it hasn’t totally devastated me. It’s come close, a couple of times, but I’ve managed to pretty much maintain my standard of living and not lose so much of what I worked hard to build up. Okay, I’ve parted with hundreds of thousands of dollars in record time — and after I worked my ass off to earn every penny(!) — but I haven’t lost my house, I haven’t been put out on the street, my cars haven’t been repossessed, and despite having a 5-3 ARM on my house, I am managing to keep up with my house payments. (It helps that  I made sure I had a 2% cap on the amount my mortgage could increase with each adjustment period, and I made damned sure my bank holds the note for the life of the loan, so they can’t sell it out from under me to a mortgage company that’s going to jack up my rate without warning.)

Despite my injuries, I’m actually doing better than a whole lot of people who haven’t been brain-injured, and that feels pretty good.

And I’m doing well at work, I’m doing better than ever at home, my temperament is levelling out, my memory is getting stronger slowly but surely, and I’m improving in so many different ways.

How do I do it? I have to ask myself, because it frankly doesn’t make logical sense to me that I should have such a crazy history of concussions and falls and accidents and assaults, and still be tooling around like nothing’s wrong. There is plenty wrong with me — on the inside of my head, that much is clear to me on most days, even if it’s not apparent to others. How do I manage to present as though I’m perfectly normal, not to mention have a normal life?

After mulling this over… and over… and over, for days, now, I have reached the conclusion that sheer force of habit has a whole lot to do with my track record. Just deciding what I want to do, and practicing it over and over and over again… going through the motions, from a slow pace, to a faster pace, to an even faster pace… till it’s second-nature to me, and it feels very natural to be doing what I do… that’s what does the trick. Starting out really basic, taking notes, keeping track of my performance on a daily basis, and being constantly vigilant about how I’m doing and how I can improve.

For example — I was having a hell of a time remembering to go through certain steps with my cat, who needs several different types of meds in the morning, and again in the evening. I was missing doses, which was throwing off their appetite and weight and mood… and this cat is almost 20 years old (but doing amazingly well, when the meds are properly administered), so we don’t have a lot of wiggle room. This poor cat… they were just all over the map, because I couldn’t seem to remember to give them all their meds in the a.m… and then I was missing things in the evening, too. Some people would say, “Just put the poor thing down — why make ’em suffer?” but dangit, I didn’t want to just give up.

So, I made a very explicit AM and PM task list for myself and forced myself to follow it to the “T” every day. I wrote down the meds schedule on the calendar in the kitchen, and I consulted it religiously. I made myself take time, each morning, to tend to the cat before I did anything else, and I just walked through the utterly annoying and boring and mind-numbing steps of setting up the meds and treatments each day… until it started to come naturally to me, and I could manage to do everything each day before I consulted my notes. I still keep my list around, but it’s for the purpose of double-checking on my task list, rather than telling me ahead of time what I need to do.

I can tell you, I felt like a total idiot and goof, having to write down such basic stuff on a list and slowly, deliberately walk through the steps, one by one, each and every morning and night. But gradually, it started to come much more easily to me, and now it’s just second nature. I used that force of habit — I forced myself to develop the habit. And my cat looks great, has been gaining weight, and their coat is full and sleek and healthy. This animal looks better than a lot of cats half their age.

It’s boring and annoying, but active habit-forming has got to be done. And I have myself to thank for all my hard work after the fact.

It’s funny… I look around at personal effectiveness folks who talk about how to achieve peak performance, and a lot of my approaches are similar to what they talk about — visualization, believing in possibilities, constantly watching for opportunities, and constantly challenging my beliefs and assumptions. I have a lot in common with them.

The one big difference that I can see between my approach and that of lots of personal performance gurus, is that my “practice” is a lot more nitty-gritty, a lot more basic, a lot less glamorous, than the approaches I hear the personal performance folks espousing. It’s less about “attracting” positive experiences than it is about doing the slog work, the grunt work, the boring-ass drudgery of creating habits of effectiveness and excellence that will stand the test of time and extend my all-too-short attention span. My approach feels a whole lot more compulsory and less optional than what I hear folks in the personal performance line of work talking about. Less about living my dreams and more about just doing what needs to be done, in order to get where I’m going.

But hey, it works for me. It’s a lot less glamorous, in the short term, but the long-term payoff is huge. And if I can just figure out the basic stuff, I actually have a chance to live my dreams.

Using my head – for real

A while back, I was wracked with a sort of remorse. It was really sinking in that the way I worked before is not the way I worked now. I saw it more each day, on the job again with people whom I had worked with, 10 years ago. I am not the same person I was back then. That’ s for certain. My temperament tends to be more snarky and snappish, my attention span is shorter, and my ability to grasp and hang onto information over extended periods of time is very different than it used to be.

It’s a problem. ‘Cause this job and my ability to perform it is my bread and butter. And I don’t want to let the people on my team down. But I was having a hell of a time remembering the things I learned only a few weeks ago, especially when I hadn’t used them on a daily basis since I learned them. I was getting pulled off my past projects by new priorities, and I was spending more time testing and tracking and planning my work, than actually doing it. So the stuff I thought I had “down” about a month before, seemed like it had mysteriously evaporated.

It was a problem. It felt like a huge one. And I felt like I was spending all my time playing catch-up.

So that’s what I’ve been doing, lately. Catching up. It often happens that I  need to retrace my steps and redo my work, so I’m doing it once more. This time, though, I’m employing a different learning strategy than I used before. This time, I’m actually putting the learning into action by applying it to my workaday tasks — and working on a private project I’ve been designing for the past several months. This private project actually relates to my workaday world — it’s a special productivity tool I use to manage my strengths and limitations and constructively overcome the hurdles that get in my way, based on what I know about my own tendencies, and my inventory of strengths and weaknesses and coping skills that have worked for me in the past.

This is good. Not only am I integrating my whole life — personal and professional — in complementary ways, but I’m also creating new ways to master the new skills I need to acquire. Instead of just reading and making notes, like I did six weeks ago, I’m now using the new skillset I need to master.

It’s gotta be hands-on. Or I’ll never retain the new information.

It’s so wild, how I forget that. I’ve written before about how I learn best — by doing — and there’s a part of my brain that knows all about it. But putting it into action is the challenge. A big one. And I forget that I have to take a break, let the information sink in, and actually use it before moving on to “learn” something else. Instead, I keep reading. It’s not enough that I learn — and master — one single skill at a sitting. Oh, no — I must read and conceptualize more… and more… and more…

I’m not sure what it is — I think my hungry brain wants to race ahead and learn-learn-learn. It gets into this groove and instead of stopping to implement what it’s just read, it gets lazy or acclimated or lulled into a false sense of security, and when I’ve gotten to the end of one section or one chapter, it wants to jump ahead and read more stuff that’s new, different, interesting. It gets into this habituated flow and gets stuck in a loop. Especially when it comes to reading, studying, taking in new information.

That’s very unproductive, and it has a tendency to overwhelm me, before too terribly long.

But I can’t be too hard on myself over this. The fact of the matter is, I’ve had six weeks for the initial flood of information to sink in. It may feel like I’ve forgotten it, but when I get back into using the information I read about a while back, a little bit at a time, I can actually sense some familiarity with it. So, it’s not gone. It’s just tucked away in the back of my head, and I need to find a way to coax it out again into plain view, where I can put it to good use.

Here, again, is a great example of where my brain is leading my mind astray. It’s convinced that I’ve lost what I gained, some time back, and it’s ready to panic, run for the door, relegate me to second-class status. The mis-firing processes in my brain are interpreting this extended learning process as a sort of failure. Its artificially elevated standards say, “If you could really do a good job with this, you’d be proficient, by now,” totally underestimating the complexity and level of involvement required to do this new work I’m taking on. My brain gets turned around and confused and disoriented, so it thinks it’s lost in the wilderness for all time and is going to wither and die there like that kid from New Jersey who starved to death in Alaska, instead of it just being momentarily disoriented on a street corner in New York and needing to ask for directions from a passerby. It can’t immediately see a way through my passing frustration, so it thinks there is no way through. It can’t immediately access the information I stashed some weeks back, so it thinks it’s gone for good.

But here’s the thing — it’s not that I’ve lost what I’ve learned before. It’s that it’s filed in a virtual drawer in my head that I just need to find and open up again. I have learned, actually. It might not feel that way, but I have. And now I’m shifting into a different stage of my total learning process. All that reading and reading and reading without associated mastery isn’t a terrible thing. It’s not — I just have to realize that the reason I was reading and reading and reading before was different that what I thought it was — and it’s actually a lot more pragmatic and clever than I realized up till this point.

The real reason I was reading and studying like crazy before was for preparation, not execution. I was reading compulsively, not to master the material, but rather to familiarize myself with it, to get the feel of it, and to get myself to a point where I could listen to someone talk about all the topics and subjects and issues and aspects without being flooded with an overwhelming tidal wave of information overload… and eventual panic. Thinking back, I can remember many instances where conversations with my team members landed me in the middle of an emotional avalanche that totally shut down my brain. I just blanked. They were talking and talking about all this stuff, and I wasn’t able to keep up. So, I spent a lot of time reading about the things they were talking about. It was for the sake of putting my anxieties about verbal communication at rest, rather than implementing anything.

That first piece — the panic switch shut-off — was the first thing I had to do before I could move forward. I realize that now. And in its hidden wisdom, my mind devised this way for me to do just that — through reading and studying and familiarizing myself with the material before I started into all the doing.

So, actually, it wasn’t bad for me to spend all that time just reading and not doing. In fact, it wasn’t spending time, it was investing it. And now it’s paying off. Because I can sit through a conversation with people who are talking about stuff that used to be brand-spankin’ new and totally intimidating… and I don’t freak out.

That’s a good thing.