The chance to make a difference, every single day


Death is never an easy thing to deal with, and losing someone — or something — that means a lot to you, is just plain hard. Grief has a timetable of its own, and even when you think you’re past it, it can come up again — days, months, years after the fact.

I’ve been thinking a lot about loss, this fall. I’m working on my book TBI S.O.S. – Restoring a Sense of Self after Traumatic Brain Injury, and I’ve been thinking about all the ways that TBI has taken something from me over the years… including my Sense of Self.

Now a dear relative has died, and I have the opportunity to look at how that loss is affecting me and many others, whose lives they touched. Looking back at their long life — over 100 years — so many people and situations came across their path. Lots of good situations, lots of hard situations. And the last thing you could say about their life, was that it was easy. The last thing you could say about their personality, was that it was easy-going. They had a hard life, and they developed the mettle to deal with it. They weren’t always fun to be around, and they could be mean-spirited and cruel. But in the end, they really had a positive impact on so many lives. So many, many lives.

No matter their shortcomings — and we all have them — they always stayed true to their commitment to make a positive change in the world. That’s what their life was really about — through teaching, volunteer work, and active service on many boards in their community. The number of people coming through their hospital room at the end, to say good-bye and thank them for their service, was amazing. So many people who gained because of their commitment.

And it occurs to me, looking back at this relative, who had so many obvious flaws, that if they can make a positive difference, then any of us can. And we should. We simply need to have the willingness and the energy to keep going. We need to have that commitment. Each of us, in our own way, has at least one gift we can offer and develop to benefit others. And each of us, when we reach out to the people around us in a spirit of genuine helpfulness, can do something positive in this world to make it a better place. We don’t have to be famous or rich or mathematical geniuses to forge ahead. We can find our own small ways to pitch in and help, and do it better in our own way than anyone else ever could.

In a way, the fact that my grandparent was a difficult person, makes their contribution all the more inspiring. They freely admitted that they had limitations, and I know that in their later years they regretted a lot of things they had done in their youth. But they kept going. They kept learning. They kept showing progress and changing with the times. They didn’t push people away because of their limitations — they engaged with them and they learned from them, as well as taught. And in the end, what really matters is the good they brought to the world.

Looking at their example, I can see so many parallels with my own life — struggling with limitations, overcoming them, finding new ones to deal with, and keeping on till I could see past the most recent obstacle and get a clearer view of the world around me. Each barrier, each obstacle has taken me higher — so long as I’ve engaged with it. And each time I’ve overcome, I’ve gotten a better view of where I stood and what my options were.

Brain injury has been a real blight on my life. It’s stolen many good years from me, and it nearly ruined me, 10 years ago. But through following the example of my grandparent, and just keeping going, I’ve gained so much more than I ever could have, otherwise. And for that, I am truly grateful.

We all have something to offer. We all have something to contribute. And that “something” will necessarily change over time. As we age, as we learn, as we grow, as we go through the changes in our lives, our bodies and brains and outlooks change, sometimes turning us into completely different people. The loss of a job, the loss of a spouse, the loss of a home, a sudden change in fortune – for good or for ill – can drastically alter us and our relationship to the world and others around us.

That doesn’t mean we stop being able to help and contribute. That doesn’t mean we stop being useful and needed. Sometimes we need to recalibrate and shift our attention… look around for new ways to be of service. But those ways are out there — if we keep steady and look for them, with an open heart and lots of humility.

Okay, I’m getting off my soapbox now. I’m in a pretty philosophical frame of mind, these days.

On Thursday night, I’ll be driving to my family again for the viewing and funeral. I’ll probably be “dark” during that time, with everything going on. Right now, I’m making my list of things I need to do ahead of time, getting things together systematically, so I can just pick up and go on Thursday after work. I need to do laundry, buy food for the road, collect my thoughts for a short eulogy I’ll be giving, and basically keep myself steady and rested for the next week.

These things are never easy, but I do have a heads-up about what’s to come, so this will be logistically easier than the last weekend, when it all sort of took me by surprise. I was ill-prepared, in some ways, but it all came out okay in the end, I guess.

The main thing to remember, is that I’m doing really well.  I have NOT melted down, since getting back, and I’m keeping steady and calm. I have a long day ahead of me, but that’s okay. At least I have a plan to follow, and I know how things are going to shake out.

Anyway… onward.

Taking better care

Because I want to be here for a long, long time

In the aftermath of my recent dr. appointment, I’ve decided I need to bump up my exercise routine slightly. Start lifting slightly heavier weights. And see how that goes.

Yesterday, I did just that — I put 5 lbs more on my dumbells and had a good workout. At the time, it didn’t feel like was pushing myself all that much, but today I’m stiff and sore, so I know it had an effect.

So, this morning I did an easy workout and focused more on my leg-lifts, which are as much about improving my balance as strengthening my knees. Vertigo has been a big problem for me for the past weeks, and I’m finally getting to a point where I can walk around without feeling like I’m going to throw up. And I did my leg lifts with just a little bit of wobbliness.

There’s progress. It’s also progress that I didn’t push myself too much this morning. In months past, I would have just made myself continue the heavier workout, but this morning I was smart and backed off. I just need some movement, not a big Workout, to get my day going.

Now I’m back to thinking about the last three weeks and how it’s tweaked my TBI issues way more than they’d been tweaked in the past couple of years. Maybe it’s a sign of progress, that I’m able to wade into situations that set me off, and get through to the other side in one relatively intact piece, albeit shaken and sick. Or maybe it’s a sign that I just pushed myself too hard over crap that was someone else’s creation, and that it’s really not worth the pain and suffering.

Maybe it’s both. Could be. I do have to ask if it’s really worth getting into those kinds of situations, but ultimately, there’s a pretty good chance that those kinds of situations won’t be going away entirely, even if I do move on to another job, so being able to handle the hassle is a skill I need to refine. If nothing else, this has been a really good learning experience, and now that I’m on the other side of it and getting more rest, I can take a look at it all from a more sane point of view, and learn from it.

Looking back on all the frantic stuff

Let’s take a look at that checklist again:


[x]  Excitability!check – I’ve been in an uproar for three weeks running, and it’s gotten old. The weird thing about it, is that it feels so justified. I feel like I have every right to be excitable. When I stop to think about it, I realize that it’s TBI talking, not reality, but it doesn’t change the experience itself — that ongoing adrenaline BLAST that just won’t let up. That firecracker response to every unexpected even that came up. Geez, how depressing, really — seeing myself react so stupidly to stresses I used to thrive on. I was on a tear for three weeks running, and I wasn’t proud of it. Once upon a time, I could be thrown into these situations and would come out on the other side stronger and better than before. Not this time. At least, that’s not how it feels to me.

[x]  Everything feels like an effort – check — God, did it ever. I mean everything felt like such a goddamned effort. From extracting information from people to just getting all the tasks squared away and taken care of. What a frickin’ chore it all was. I felt like I was running through quicksand, the entire time. Chasing after the elusive goal, running from the tigers in hot pursuit of my tail. I still do feel that way, to some extent, although the quicksand is more like wet sand now. I’m not drowning in it, but I’m still struggling to make progress. And that feeling that everything is just a trial and a pain in the ass has extended out to all the other projects I have going on. I had hoped that when this situation was through, I could go back to getting things done in good order, but now I feel even less capable than I did before this whole sh*tstorm started.

[x]  Feeling unsure of yourself – check — BIG check on this one. See above. People kept trying to bolster my self-confidence, telling me, “You can do it,” and part of me believed it, but for chrissake, I had really good reason to be unsure of myself, because there were so many pieces in the puzzle, and there were so many things that could have gotten missed, and in fact they did get missed. I mean, really obvious things that were right in front of me, that I was sure I had figured out… they slipped right by me, and I had to scramble at the 11th hour to get them in place. “Why do you question yourself?” they asked me. Duh — that’s why. Personally, I feel that people who aren’t unsure of themselves are often complete idiots, but that’s not in synch with the dominant paradigm, where everyone has to be so self-confident and self-assured all the friggin’ time. Please. Who the hell comes up with these ideas? Positive psychology proponents? Or Wayne Dyer? Tony Robbins? Who? Sometimes I just need a break — and I need people to admit that, every now and then, a healthy dose of self-doubt makes for better decision making and better performance. This aspect of my issues is not all bad, all the time.

[x]  Feelings of dread – check — Yeah, pretty much all the time. Dread about the project, dread about my life, dread about the job, dread about all the other things I wasn’t getting done, dread about my marriage, dread about, well, everything. And dread about what was to come later — that this was just a precursor to more of the same later. It wasn’t until I gave up hoping for the best, that I started to feel better. Just accepting the dread and accepting the sense that this and all the other projects that I’d ever have to do with these people were doomed, somehow made it more tolerable. But what a thing — to find relief only from giving up hope.

[x]  Feeling like you’re observing yourself from afar – check — It was the weirdest thing… that sense that I wasn’t even all there… The feeling that a part of me had stepped away and was watching myself flail through that project… not like some mystical out-of-body experience where you’re floating in space above your body, but like I was sitting in a small, dark, stale-sweat-smelling, trash-littered, popcorn-covered-sticky-floor movie theater in a rundown mall on the outskirts of an old depressed steel town, watching myself hack through the underbrush on the movie screen in front of me. I felt so disconnected from my life, from my mind, from my body, from my whole experience, and it wasn’t even until afterwards, when I could get a little distance, that I realized what a surreal experience it was.

All in all, I have to say that some of the issues above were specific to the project — they got set off in an irrational fashion because of the stress and the pressure. But others were generally applicable to my overall situation. Feeling unsure of myself is, I believe, just a logical result of having been in so many situations where I was SURE (and I mean 100% ironclad, absolutely positively SURE) that I was on -track, only to realize — often at the 11th hour — that I was only 80% on, and the remaining 20% was landing me in hot water.

In fact, if anything, that lack of sureness may have been what saved me, because it kept me from being too cocky, too brazen, too eager to take things for granted. It’s when I get into thinking that I’ve got everything covered (when I don’t) that I get into real trouble.

And if there was one thing that probably got me through, it was that lack of sureness, that constant re-tracing of my steps to make sure I didn’t miss anything.

Now, the thought had occurred to me that I might have been perseverating on certain details — like re-checking the code for the 209 attachments distributed across 56 web pages over and over again. And I did kind of fixate on some of the small details, and that threw me off in my planning and time management. But if I hadn’t revisited those 209 attachments a bunch of times, they would have turned out like crap. They would have broken. And then I would have been totally screwed. So, all things considered, I think I did okay.

And here’s the thing about TBI that really strikes me — some of the issues we have are based in unrealistic thinking, while others are based in actual experience that arises from TBI. The sense of doom that I had, the depression I had, the excitability… that was based in unrealistic thinking that got “stuck” in my mind. But the self-doubt was based in actual experience. And it can be pretty damn’ difficult to tell the difference at times.

It might have been different if my neuropsych had been around to help me think things through, but for this one I was on my own. Who knows how it might have been, had they been around? Maybe they would have made things worse, by trying to talk me out of my self-doubt and trying to get me to be easier on myself. Easier on myself could easily have led to screwing things up. I had to push hard, and it took its toll. And they might have tried to minimize my difficulties, telling me I wasn’t really having all that trouble. They’ve done that a bunch of times, and it really bothers me when they do. As though I’m making all of this up… That’s just even more demoralizing — to have someone gloss over your difficulties as though they don’t matter and you don’t actually have to do anything about them… just tell yourself a different story about your experience.

It might have been helpful to have a sounding board to bounce all this off of… then again, maybe it was best that they were away. I don’t think I could have handled being told that it wasn’t as bad as all that.

Anyway, now the project is over and I am getting my life back. I see my neuropsych on Tuesday, and we’ll see how they respond to my experience. I’m kind of dreading talking to them about it, because they do tend to minimize my experience and tell me that it’s not as awful as I think it is. I appreciate the sentiment, and I’m sure they’re trying to help, but this time I had a terrible, awful time of things, and I need that to at least be acknowledged.

But that’s neither here nor there. It’s off in the future and who knows what will happen?

Anyway, in the spirit of restoring normalcy to my life, it’s time to take out the trash and rake up some of the leftover leaves from last winter.


Yup, wrong again. And right again.

Feeling like you're out of options?

Okay, so the past couple of weeks have been an exercise in … well, everything. I’ve been working my ass off since March 26, really cooking along at this project, trying to explain to the people around me why I actually need to work at this (hint: it’s not because there’s anything wrong with me — people just have no friggin’ idea what it takes to do this job and get things done) … then I tried to take a day off a week ago Saturday, got sick as a dog the next day… and I’ve been slogging along like a manic drone, just trying to get everything done that needs to get done. And I’ve got another five days to go till the bulk of it is out the door.

Then we have Phase II. Good times.

But in retrospect, I can see how I made this a ton harder for myself than I “needed” to. My first mistake was to underestimate the amount of work. The second was to not lay out all the moving pieces and figure out how they were all going to fit together. I just assumed (BIG mistake, as usual) that things would work when they were put together. But I should know by now that I work with a bunch of folks who love their shortcuts and they love to just get crap done and off their plates, with no view of the future and no consideration for anyone past their own little cubicle-verse. It’s not their fault. They’ve been working for a relatively small company on relatively small projects for the past 10 years. Now they’re being asked to build enterprise-class applications that will be reused over and over and over again in a thousand different ways before all is said and done. They’re not lazy (well, some of them aren’t). They just don’t quite get it. Yet.

It’s not my intention to blame them for the fundamental instability of this whole thing. That’s my bad. Because I know better, and I can work around them when I put my mind to it. I just didn’t do that. And I waited too long to get a jump on things. Because I was too busy being pissed off at the other folks, to actually dig in and make my life easier.

It took me about a week to get my sh*t together — on Sunday/Monday when things started getting really dicey at home, with me being woken up at 3:30 a.m. by someone in an uncontrollable weeping anxiety-induced rage attack who just couldn’t handle having to learn some new things about the new computer I hooked up over the weekend. I mean, just total meltdown — all because things weren’t working the way they wanted them to.

And at 4:00 a.m. as I realized I was NOT going to get the full night’s sleep I really needed to be viable and competent at work in a few hours, it occurred to me that I was probably acting just like this — and I decided to stop.

So, I did. I just buckled down and got down to work. And seriously folks, I have done some super-human work in the past week. Of course, it’s not done yet, and I have a bunch of outlying issues to deal with, thanks to my poor planning and whiny-ass behavior, but I have done a truly stellar job. And I’ve managed to eke more cooperation out of colleagues who are not only down the hall but all over the world, than I realistically expected to get.

It’s all working out.  At a price, sure, but it’s all working out. And these are lessons I’m not likely to forget next time. Or maybe I will.

Looking back on the past couple of weeks, I try to find the ways that I could have made my life easier. And I look for my blind spots. I think back to my list of 84 ways TBI can make your life really interesting, and I think about the things that have contributed to this situation. Viewing the list, it looks like a ton of issues have all come up:

[x]  Impulsiveness – check
[x]  Aggression (verbal/physical) – check (my apologies to my coworkers)
[x]  Raging behavior – check (again, my apologies to my coworkers)

[x]  Trouble being understood – check
[x]  Trouble understanding – check
[x]  Trouble finding words – check
[x]  Trouble communicating in generalcheck

[x] Agitated, can’t settle down – check
[x]  Angerrrrrr!!! – check
[x]  Anxiety – Feeling vague fear, worry, anticipation of doom – double check
[x]  Depression, feeling down – check
[x]  Excitability! – check
[x]  Everything feels like an effortcheck
[x]  Feeling unsure of yourself – check
[x]  Feelings of dread – check
[x]  Feeling like you’re observing yourself from afar
17. Feelings of well-being
[x]  Feeling guilty – check
[x]  Feeling hostile towards others – check
[x]  Impatience – check
[x]  Irritability – check
[x]  No desire to talk or  move – check
[x]  Feeling lonely – check
[x]  Nervousness – check
[x]  Feelings of panic – check
[x]  Rapid mood swings – double-check
[x]  Restlessness – check
[x]  Tearfulness, crying spells – check
[x]  Feeling tense – check
[x]  Feeling vague longing/yearning – check

Day-to-Day Activities
[x]  Being overly busy (more than usual) – check
[x]  Feeling like you can’t get moving, you’re stuck – check
[x]  Feeling like you can’t get anything done – double check

34. Altered consciousness
35. Aura or weird reverie, trance
[x]  36. Trouble concentrating – check
[x]  Trouble making decisions easily – check
[x]  Trouble reading – check
[x]  Analytical skills suffer – check
[x]  Trouble telling what’s real or not – check
[x]  Being easily distracted – check
[x]  Being forgetful, can’t remember – check
[x]  Nightmares – check
[x]  Worrisome thoughts – check

Physical – Eating
[x] Food cravings – check
[x] Eating less / more than usual – check
[x]  Heartburn / indigestion / upset stomach – check
48. Losing weight

Physical – Head
[x] Headache(s) – check
[x]  Stabbing pain(s) in your head – check

Physical – Hearing
51. Hearing music others don’t
[x]  Ears ringing (tinnitus) – double check

Physical – Pain
[x]  Backache or back pain – check
[x]  General body aches – check
[x]  Joint pain or stiffness – check
[x]  Neck pain – check
[x]  Touch feels like pain

Physical – Sleep
[x]  Waking up too early – check
[x]  Being fatigued / tired – check
[x]  Difficulty falling asleep – check
[x]  Waking up during the night
62. Sleeping too much

Physical – Vision
[x]  Trouble seeing at night – check
[x]  Being sensitive to light – check
[x]  Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – Sensations
67. Your skin feels like it’s crawling – ironically, not
[x]  Feeling like you’ve gained weight – check
[x]  Sensitivity to cold – check
[x]  Sensitivity to noise, sounds – check
71. Smelling odors / fragrances that others don’t smell

Physical – General
[x]  Feeling dizzy / have vertigo – check
[x]  Your heart races or pounds – check
[x]  Hot flashes or sudden feelings of warmth – check
75. Losing consciousness / fainting
76. Metallic taste in your mouth
[x]  Muscles spasms or twitching – check
78. Muscle weakness
79. Seizures
[x] Nausea – oh yeah – check
[x]  Sexual desire feeling “off” – check
[x]  Skin breaking out / acne – check
[x]  Hands or feet swelling – check
84. Vomiting  – wish I could

So, it’s been an eventful couple of weeks. And times like this I’m not sure if my issues are directly TBI-related or just life in general. Everybody feels this way at times — but all at once? See the image at the top of this post for a 1,000-word replacement description of how it’s felt.

All I can say is, I’ve been in countless situations like this in the years prior to my most recent TBI, and while I didn’t particularly care for the experiences, I never had this level of off-the-rails panic, anxiety, aggression, frustration, etc. And being aware of the fact that I have not been handling this well has not helped me at all. That is what’s been the most dispiriting of all. Just that feeling of not being able to handle sh*t, not being on my game, not being able to handle anything — at the get-go. And really beating myself up over this whole thing. Like it’s an unredeemable mess.

But what I need to remember is that NOTHING is an unredeemable mess. It’s just not. So long as I keep going, so long as I continue to observe and learn and find workarounds — and don’t isolate myself from outside help — and I can manage to accept myself and not get rigidly locked into thinking that I have to be one way and one way only, then I can make room for more in my life — more experience, more wrongness, more rightness — than I would have, if I were completely focused on everything being perfect all the time — OR ELSE.

In the spirit of being truly human, here’s OceanLab with a song that fits my life pretty well this morning. Just beautiful.

So, the thing is, when I look back on my life, the hallmark of my experience has been being wrong — over and over and over again. I have been wrong so many times, I have all but give up on “getting it right the first time” as is so popular and lauded by our dominant paradigm. I mean, countless small details escape me. Or I’m so focused on paying attention to the small details, that the big main ones get lost in the shuffle. And when I try to write things down and keep track of them that way, I rapidly lose my place and everything gets even more jumbled up.

What a mess things can be.

Then again, in the spirit of “failing early, fast and often” as a paradigm for continuous, incremental improvement, I absolutely utterly excel. I don’t know anyone who fails early, fast and often as much as I do. And when I think about it, it seems to me that the ideal of getting it right the first time is pretty unrealistic. You’re going to fail, if you live life right. And you’re going to fail a lot, if you don’t hold back. That’s what I do — I don’t hold back. I dive right in. And I learn as I go. If I don’t, I’m screwed.

Maybe that’s one of the benefits of having had so many concussions/mild TBIs — I’ve acquired the ability to adjust rapidly to being utterly clueless in countless situations. Seriously, friends, when I’m in high-stakes situations, my impulse control generally goes right out the window, and I often end up in the midst of a terrible, terrible mess. The only redemption for me is to dive deeper, drive harder, and hack my way through the weeds, till I come out on the other side. I’m in the underbrush as often as not, and since I usually can’t tell what I don’t know till I get there, I often end up standing at the edge of a proverbial cliff with the local law enforcement at my heels — complete with barking dogs and loaded guns.

Such is my life of adventure.

Good thing they dumped their fuel!

Of course, a lot of this I could avoid, if I could just calm myself down and think things through rationally up front. And I often can do that. But every now and then, I get hit with something like this project that totally blindsides me and throws me off. I get angry. I get aggressive. I get hostile. And I get physically ill. I go into a tailspin, and I have to pull myself out of it quick, before I end up like an F/A-18 fighter jet crashed in a Virginia Beach apartment complex courtyard.

Of course, I’ve got plenty of experience doing this. I’ve messed up more times than I can count — and if my memory were better, I’d have lots of great stories to tell. The problem is, I don’t always remember the things that have happened before — if someone sits with me and talks them through, I can often piece together what once was. But when I’m on my own and there’s no one available to talk to  — and when I don’t take the time to sit myself down and intentionally work my way through the scenario and get my head on properly — things get ugly. I just didn’t do that, this time. I was too busy being pissed off about the timing of this and being upset with my boss and my boss’es boss who signed me up for this jungle march.

I really need to watch more adventure movies. Old movies about WWII. I should also go back to reading military histories like I was before. They really help me.

Yeah — what ever happened to me reading my big book of Samurai legends? I recall that it was helping me immensely before. Did wonders for my attitude and outlook. Gotta dig that book up and start reading it again. Like a Bible of sorts. Yeah, do that, why dontcha.

After I finish the work I’m doing today. No, wait – while I’m finishing the work I’m doing today. The stories are short, so I can read them in the midst of my slog through the jungle — the jungles of this project, and the jungles of my brain.

The thing I have to remember through all of this is that it’s a learning experience. Everything is a learning experience. Without exception. The difference is with me — will I make the effort to learn what I need to learn? Will I have compassion on myself for screwing up and find ways to redeem myself, even after the worst sort of behavior possible? Will I have the wherewithall to adjust and adapt — often in mid-stream — so that I don’t get hung up on rocks like a cruiseliner sailing too close to some Mediterranean island?  What will it be? Will I decide that my brain is too broken to handle anything well, or will I realize that my brain is constantly relearning how to do things — over and over again, sometimes the same lesson repeatedly — just like everyone else who bothers to pay close attention to their life?

What’s it gonna be? Am I gonna settle for being wrong, over and over again? Or will I see this as a chance to figure it out differently and get it right the next time — over and over again?

It’s up to me. I have a choice. So, it’s time to make the better choice of the two. And it’s time to get back to work.


Using routine the right way

Like seasons - recurring, yet beautiful

I’ve been thinking a lot, lately, about the info I read recently about how making breakfast can make you more creative,  and I’ve realized that this approach has been helping me a great deal. I’ve been breaking up my established routines more, lately, and I think it’s been helping me learn better ways of dealing with my life in general, coming up with more creative solutions, and generally improving my performance at work.

I have to say, looking back at my job choices and performance in the years after my last TBI, I was nowhere near the level I should have been at. And my job choices showed it, too. I went from being a senior consultant type of person, to being a “plug and chug” person who could barely handle the most elemental of tasks. And a lot of them I didn’t handle. I just muddled through and hoped people wouldn’t notice that I was screwing up. And then I would take off when things got to be unsustainable and I was pretty sure everything was going to catch up with me, and they’d figure out that I was pretty impaired.

God, when I think back, I was just a WRECK at work. I just wasn’t doing a very good job at all. WTF?!

TBI, that’s WTF. One hell of a TBI.

It took me years to get back to a place where I was even capable of building myself back up. It took me years to stop screwing myself over and digging myself deeper and deeper holes I couldn’t climb out of.

But even after getting back on my feet again and “normalizing” to where I wasn’t shooting myself in the foot every other day… looking back at the last 18 months I’ve been at this job, there are so many things that I was tasked with doing that I just didn’t “get” how to do. It’s embarrassing to think about it now, looking back. Things like sending certain kinds of emails to people, performing certain tasks that I have been doing for years and years, and generally managing my workflow. It’s been a bit haphazard and chaotic, I’m embarrassed to say. And I’m not sure why they’ve tolerated that level of performance in me… unless they figured that I was still on a learning curve…

Wow. That’s a pretty long learning curve. And yet, they keep me around… I guess I must be doing something right.

Anyway, I’m really doing so much better than I have been before, and I think I know why that might be.

Basically, it’s because I have developed routines in my life. From the first moments that I wake up in the morning, to my preparation for going out into the day, to my schedule at work, to what I do in the evenings… and the weekends, too… I have a routine I follow. It probably sounds boring and uber-disciplined, but it has been my saving grace. By establishing what I’m going to do each day, and doing it the same way each day, I have “offloaded” the burden of having to re-think everything I do, and I have more time and energy to think about things that matter more to me — like better ways to do my job, better ways to live my life. I have more energy to repair the damage from before, because I’m not having to figure out what I’m going to have for breakfast each day… how to dress for work… what route to take to work… etc.

The time and energy I save on not having to re-think my breakfast each morning, is time and energy I have for thinking about my day and planning things I’m going to do. The time and energy I save on having a routine for my morning prep for work is time and energy I have for thinking through what I need to get accomplished and forming a picture in my mind of how to go about doing what I need to do.

Getting rid of all the hashing through minute details frees me up to actually have some depth of thought and consideration, so while I may look like I’m on autopilot, I’m actually able to think more in-depth about what I’m doing and experience it, not just “git ‘er done”.

So, my routines have helped me tremendously. They’ve also helped reduce the amount of stress in my life. Having to re-think everything constantly takes a lot of energy and it can become quite stressful, which put me into a constant fight-flight state of mind/body… and that was no good. I was always on  and the adrenaline marinade from having my proverbial foot on the pedal-to-the-metal, day in and day out, was kicking the crap out of me, frying my system, making me way too jumpy — and not helping my thought processes at all.

Another the way my routines help me, is when I break up my routine a little bit, now and then, and do things differently — like in the article about how making breakfast differently can help you become more creative. With my stress level down, and my foot taken off the fight-flight pedal, my system has been able to balance itself out, and I’ve been able to relax a whole lot more… which also makes it possible for my brain to learn.

When you’re really stressed, your brain just doesn’t learn as well as it does when it’s relaxed. So, having a regular routine that gives me a sense of comfort and stability has been critical to my ability to improve and change. It’s like, you need a routine and some “boring” stability to get settled down. Then when you’re settled down and your brain is receptive to new ideas, then you can try new things and shake things up a little bit.

But having that routine in place first is critical. Because when you’re shaking things up, you need to have some sort of mental safety net you can fall back on, if things get too stressful. If things are too chaotic and confusing and unpredictable, it’s easy to go into a mindset of panic and anxiety, and you end up losing ground. But if  — in the midst of your innovation — you have a safety net to fall back on, and you can just go back to your regular routine when you’re scared or stressed, then you have more freedom to experiment.

And you have more freedom to grow.

But you have to have a foundation first. You have to have stability and a sense of calm and comfort, in order to make real progress. At least, that’s my experience.

And it works for me.

Now, I know a lot of people think that routine is the opposite of creativity, but I have found that routine supports creativity. How can you be truly creative, unless you have freed your mind from the truly deadening burden of re-thinking even the most basic activities of your everyday? I know people who insist that they cannot stand routine, that they need to be “free” to go to bed whenever they like and get up whenever they like, spend their money however they feel “in the moment”, and drift in and out of relationships “as the spirit moves them.”

It may feel to them like they’re being creative, but I see a lot of them really suffering with problems and issues that never, ever go away. They get stuck in these cycles of personal problems that they never have time to really think deeply about, because all their energy is used up “being creative” about the smallest of details in their lives. And the result is chaos — personally and professionally. They go from one crisis to the next, over things that could be solved if they slowed down long enough to really look at what is going on with them, and if they gave some honest, extended consideration to how to fix those things.

But honesty scares them. And so does the idea of routine. So, they end up stuck. And they’re not nearly as creative as they’d like to be, because all their energy is used up performing low-level activities that can be put on auto-pilot.

And God forbid I suggest that they do things differently. It’s wild, seeing how intensely they defend their “creativity” when all it seems to be is a series of distractions that keep their minds off their troubles — troubles which never, ever go away.

Am I being harsh? I don’t think so. After all, I used to be like that. For real. I was so caught up in the low-level details of my everyday, that I never had any energy left over for the things that actually mattered or would let me get ahead. I was so stuck, and until I developed a routine for each day and stuck with it, I couldn’t get free.

Things are different now. Very different, indeed.

Routine is my friend.

Learning the hard way may be the best way

I recently came across this article – Learning information the hard way may be best ‘boot camp’ for older brains (thanks Twitter) and I found it very encouraging. It seems to support what I believe more and more every day — learning things the hard way is the best way of all. And it seems to support my sense that when you’re bouncing back from TBI, and you’re working at overcoming cognitive and behavioral deficits, pushing yourself a bit, making mistakes, and then learning from your mistakes can be very, very helpful.

I’m not a rehab person, so I can’t speak to how rehabilitation theory goes, but it seems to me that — especially with TBI — there may be an eagerness (conscious or not) to ease up when things get tough… easy does it… and let up on the amount of challenge that’s presented to the patient/survivor/individual. I think it may actually be human nature to do that, since you don’t want to push people too terribly hard, especially if they have been injured. You don’t want them to overdo it, and you also don’t want to put yourself in danger by provoking aggressive behavior.

I think that aggressive behavior and tendencies to lash out are particular dangers when it comes to TBI and recovery. People get intimidated and/or they just don’t want to have to deal with it, anymore. When someone with TBI gets overwhelmed and feels put-upon / threatened, they can lash out and make the lives of everyone around them pretty miserable. It’s not fun for anyone, and the person being pushed can end up feeling stupid, depleted, and generally less of a real person than they were before.

And nobody wants that.

So, we tend to back off. Unconsciously, I think. Because we don’t always know what to do, and our lives are often “exciting” enough without having to deal with someone’s brain injury on top of it. So, we don’t push others. And if we’ve got our own brain injury issues to deal with, we may get dispirited from having a bunch of bad experiences that make us think there’s something wrong with us, and we have to do less instead of more, so we don’t end up looking/sounding/acting like freaks.

The thing of it is, though, this may be the opposite of what we should be doing. Especially if we are older. It’s one thing for kids who experience TBI – their brains are changing and growing and they are still being developed. And learning the hard way may pose issues for them, as their personalities are still developing, and they may pick up some flawed messages (or interpretations of messages) from their experiences.

For older brain injury survivors, however, it could be that making mistakes and learning from them is the best medicine.

From the article:

Canadian researchers have found the first evidence that older brains get more benefit than younger brains from learning information the hard way – via trial-and-error learning.

The finding will surprise professional educators and cognitive rehabilitation clinicians as it challenges a large body of published science which has shown that making mistakes while learning information hurts memory performance for older adults, and that passive “errorless” learning (where the correct answer is provided) is better suited to older brains.

“The scientific literature has traditionally embraced errorless learning for older adults. However, our study has shown that if older adults are learning material that is very conceptual, where they can make a meaningful relationship between their errors and the correct information that they are supposed to remember, in those cases the errors can actually be quite beneficial for the learning process,” said Andreé-Ann Cyr, the study’s lead investigator.

In two separate studies, researchers compared the memory benefits of trial-and-error learning (TEL) with errorless learning (EL) in memory exercises with groups of healthy young and older adults. The young adults were in their 20s; the older adults’ average age was 70. TEL is considered a more effortful cognitive encoding process where the brain has to “scaffold” its way to making richer associations and linkages in order to reach the correct target information. Errorless learning (EL) is considered passive, or less taxing on the brain, because it provides the correct answer to be remembered during the learning process.

In both studies, participants remembered the learning context of the target words better if they had been learned through trial-and-error, relative to the errorless condition. This was especially true for the older adults whose performance benefited approximately 2.5 times more relative to their younger peers.

This really excites me, because it confirms what I have firmly believed for some time — that the process of learning from mistakes is far more instructive than getting everything right the first time. I’ve seen it time and time again, and I do believe it’s one of the secrets of my success over the years — I’m not afraid to make mistakes. The times when mistakes are a problem, are when other people have no tolerance for mistakes, and they expect me to get everything right the first time.

Here’s the deal — I’ve had enough injuries and experiences over the course of my life, that the chances of me getting everything right the first time are slim to none. And in fact, the times when I do (by chance) get things right the first time, I’m less likely to repeat the performance on down the line.

So, I have a pretty high tolerance for screwing up the first time through. The problem is, however, I am working with people now who don’t have a high tolerance for it. They get nervous. They think it means there’s something wrong. I say, as long as people are pulling together as a team and can help cover for each other and area available to help — and there is no stigma associated with screwing up — you can get a ton of work done, and do it quite well. And everybody can learn something from it. But if you hang your hat on always getting everything right, delivering everything ON TIME and being 100% error-free at all times, without fail, well then, you’re just setting up bogus expectations that will make everyone feel like crap.

I think one of the hurdles with overcoming TBI when you’re older, is that conviction that you’ve already learned what you need to know, and you’re not going to need to learn things again. Or that if you have to learn things again, and you screw up the first time (or first couple of times) you do something that “should” be familiar, it means there’s something wrong with you, and you’re damaged permanently.

This is also a big problem, when you’re dealing with other adults, who hang their hats on the idea that they are experts and they know all there is to know about their subject matter and domains of expertise. It’s tough, especially in professional circles, where your livelihood depends on KNOWING how things work and being EXTREMELY CAPABLE  in everything you do. In a business environment, where precision and perfection are prized and financially rewarded, it can be pretty tough going. Especially when everyone around you is even harder on themselves than on others. In a work environment, there is this mythos of perfection, of ideal execution, of getting things right, no matter what. Especially in technology, we’ve got this, and it’s a pain in the ass at times. There’s just this expectation that if you’re being compensated a certain amount, you’re going to perform at a certain level. And there’s not a lot of margin for error. Getting it right the first time is the ideal.

But I don’t think life works like that. And I think that sets us up for failure of our own making. Of course things will be overlooked. Of course we will make mistakes. Of course we need to relearn things. Of course we’re going to be constantly surprised by the areas where we have to make more progress, even repeat former progress. Of course we’re going to have plenty of occasions where we’re a lot less facile than we thought we would be. That’s all part of relearning to live our lives in this new way. But it doesn’t mean we’re broken, permanently damaged, or unable to have full and fulfilling lives.

Far from it.

It just means we’re human in all different ways, and we have the opportunity to learn again — again and again and again.

Ultimately, I think a lot of it is about avoiding those mental traps we block ourselves into — being too brittle, inflexible, and not being open to greater possibilities in life. TBI is problematic in that it can make us more agitated, restless, irritable, and aggressive, and our brains are really sensitive to flagging energy, so that can make this kind of “boot camp” learning problematic. But if we can get past the idea that messing up means there’s something wrong, then this kind of trial-and-error learning can be a very powerful tool in helping us get back to where we want to be — and even better.

Exercises in frailty

… and humanity, too.

I’ve been thinking a lot, lately, about what I’ve recorded here in this blog over the past few years. It hasn’t always been pretty, it hasn’t always been very smart, and in places — looking back — it’s been downright embarrassing.

But it’s been human.

Honest, too.

We’re all just trying to figure things out. This is my way of doing it, within the context of my injuries.

We all have those — injuries. And we all have our burdens.

I heard it said recently that by the time you get to a certain age, if you’ve lived your life as a regular person, you’re bound to be a survivor of something.



When TBI help is not helping

I’ve been thinking a lot, lately, about how I never got any diagnosis, rehab or therapy help for my MTBI’s (until the past year or so), and how that has affected my life. I’ve been seeing a therapist who is a neuropsychologist, as well as a diagnostic neuropsychologist who has helped me understand a great deal more about how my TBIs have affected not only my brain by the rest of my life, as well. And it’s great to be getting this help — and to be able to talk to friends and family members about my TBIs in ways that are helpful and actually informed.

But I have to wonder if maybe one of the reasons I’ve been able to function as well as I have (in certain ways) is because I’ve gotten next to no “TBI help” from people in my life. Nobody ever recognized (as far as I could tell) that being knocked out, falling down stairs, and/or being hit on the head a bunch of times, could have as big an impact on my cognitive and behavioral expressions as it did. Nobody ever approached me as someone with special needs who needed special attention, and whose needs should be accommodated.

To be clear, I had a lot of problems when I was a kid. The falls and sports concussions and the attack that knocked me out when I was eight appear to have skewed my behavior to the extreme, and I was pretty tough to handle at times. But all through my childhood, difficult as it was, I was never cognizant of having “problems”. I thought it was everyone else who had the problems, not me. I didn’t perceive myself as being different — in part because my parents never treated me like I was different, just difficult… in part because I think my perception was so anosognosic (I had no clue that I had no clue what was going on) that I couldn’t self-assess and self-regulate at all.

Granted, it’s no fun growing up being told that you’re lazy and a bad seed and that you’re just not trying hard enough.  It’s no fun having all the authority figures in your life yell at you, make fun of you, chastise you in public, discipline you, and generally hound you to do things you have a really hard time doing (if you can do them at all). But all the messages from my childhood that I internalized that took a toll on my self-esteem, as an adult, I can nowadays reason my way past them and reverse their impact simply by understanding that they just weren’t true.

Now, if I had grown up with the belief that I was damaged, broken, deficient… and that there was nothing to be done about it, other than compensate and make concessions and get special treatment from the powers that be, I think that might have taken an even greater toll on me. Because it would have been true. Irrefutable. Definitive. Sort of. I could totally see myself falling into this state of resignation over my broken brain and just never having any hope of building a real life for myself. I might have given up and become even more marginal than I was — not because the rest of the world didn’t understand me and my mind was having trouble wrapping itself around its difficulties, but because my spirit would have probably been broken, and I would have ushered myself to the margins and just been glad for what little I could get from life… hiding in the corner and sneaking out when no one was looking to gather crumbs that fell off the proverbial table.

I think, too, never having an explanation for why everything was so damned difficult for me all the time, actually helped me. It didn’t give me a reason to quit trying. All around me, throughout my life, people with expectations were giving up on me. Parents. Teachers. Grandparents. Aunts and uncles. Neighbors. Cousins. Just about anyone who had expectations of me had them dashed in short order. No matter how hard I tried, I just couldn’t seem to get it right. But I didn’t have a reason to stop trying. I was never told, “You’ve been injured — permanently — so why bother?” I was never “reassured” that it was okay to fail. I was encouraged to go easy by some people who lost faith in me, but I never gave up on myself, and I never lost faith that somehow, some way, I would figure out how to get done what I set out to do.

I just wasn’t giving up. I didn’t have any tools given to me, that I can recall, other than try-try-again, and I had to come up with a lot of systems of my own, but I did try-try-again and I did come up with systems. And somehow, some way, I did manage to build a pretty impressive life — and resume — in the process.  It’s been a long, tough row to hoe, and I’ve been knocked down more often than I care to think about, without people offering me a hand up. But you know what? I can bounce. That’s what I do. I bounce. I’m like one of those Weebles. I wobble, but I don’t fall down — permanently. Sure, my self-esteem is for crap, a lot of times, and I automatically disqualify myself from activities I messed up as a kid, which I could probably do now that I’m grown. But I’ve figured out how to keep moving, keep progressing, keep advancing… even in the total, utter absence of self-esteeem.

Surprisingly (compared to what I hear said all the time), you don’t actually require ironclad self-esteem to get stuff done in the world. In some ways, having severe self-doubts and low self-regard can keep you honest and working hard.

Now, I would imagine that TBI folks who receive formal rehab and are given tools to use to get by in life may have a more pronounced sense of ability because they receive guidance and training and rehab therapy that is meant to reassure them that they can do what they set out to do, and is designed to return them to functionality. And when they bump up against the upper limits of their capabilities, it may come as a surprise. I think that would be even more upsetting for me than not realizing you have problems, and encountering problems, time after time. I think that would eventually take a huge toll on my spirit. I would think, I’ve been shown strategies and given tools. Why aren’t they working? What’s wrong with me? Am I really that messed up? Why am I not getting better?

I wouldn’t know exactly what it’s like, because I’ve never had real rehab or occupational/speech therapy. But if I were getting rehab therapy, I would probably be inclined to push the envelope of my abilities, and I’d probably fall flat or run out of steam over and over and over again — and be really pissed off that things got mucked up. I should be rehabbed, right? That’s just me. I don’t know if others experience that, as well, but knowing myself and my tendencies, that’s probably where I’d be.

Another thing that I think might happen with people who get rehab and whose friends and families know about their head injury, is that they get moral support and encouragement from their various relationships, but when they muck up, they get that subtle (and often unarticulated) message that it’s okay for them to be less functional than they’d like to be, ’cause they’re brain-injured. So, they shouldn’t feel so bad about it. And maybe they shouldn’t try so hard… maybe they should just accept themselves as they are and settle into the kind of life that has been given them, rather than the kind of life they want to create.

I notice that happening in my immediate circle, where people close to me who know about my head injuries are trying to be loving and gentle, but they end up.. well, “emasculating” me in the process of my “journey towards wholeness”. I mean, it’s all very well and good for them to care enough about me to reassure me that I’m still a good person who has value, but it’s not helpful for me for them to downplay the importance of trying to do my best. It’s not helpful for me to have expectations lowered, and accept failure as a given. I’m still a work in progress, and there’s no telling how far I can go in life, given the right tools, the right approach, the right form, the right level of effort. But all too often, my circle of supportive friends and family seem to settle for accepting me as I am, which also includes accepting my screw-ups as being okay.

I wish they wouldn’t do that. I’ve got to have a talk with them about what I would like them to do.

For me, so much of doing well in life is not so much about innate ability, as it is about spirit and determination to develop what ability I have into something more. I think that’s something people lose sight of — especially later in life when full-grown adults (like me — I’ve got a birthday coming up, and I’m getting closer to 50 than 40 — when did that happen?) — are starting to wind down a lot of their activities and/or they’re accustomed to working with a set of abilities that they’ve honed over the years, but haven’t really worked at keeping up. And they figure they can just draw on what they’ve accumulated in the past.

For me, no matter how old I am or how much older I’m getting (and I’m damned lucky to be getting older, lest I forget how many close calls I’ve had in the past), I am not in a position where I can just slack off and accept things for what they are. If the rest of the world wants to retire and fade away, I’m not going to stop them. If the rest of my peers are going to quit improving and honing their abilities and making as much as they can of what talents and interests they have, I’m not going to stand in their way. But for me, I have to keep moving, keep improving, keep at it. And I have to not take any of my “innate” abilities for granted.

Doing that is inviting disaster.

That being said, I really think people need to be reminded that none of us has any guarantees in life, and freedom is never free. It’s entirely up to us, what we choose to do with our talents and interests and abilities, as well as our injuries and setbacks. Just because you have experienced an injury does not mean you’re any less able to improve than anyone else. Or that you are entitled to work any less hard. If anything, you have to work harder — but remember, that hard work can really pay off. No, there are no guarantees, and you may end up expending a lot of effort for what seems like a relatively small pay-off, but if you take delight in the discipline of the work itself, and you get something out of just having at it with all your might, then the outcome — while important — does not become the be-all-to-end-all.

And the work itself becomes its own reward… As well as all the perks you get from building your character and inner strength while working your everloving ass off.

But it’s still work. And to do your best, you have to keep your spirits up. And to keep your spirits up, you need to not be constantly reminded that you’re less-than (’cause the doctor said so), or that you’re disabled (because the insurance company said so), or that you’re any less deserving of your place at the table in life. You need pep talks and coaxing of all kinds — gentle as well as matter-of-fact. You need supporters who support the person you can become, not just the person you appear to be at the moment. You need backers who are realistic and optimistic at the same time — not out of some pie-in-the-sky Pollyanna BS, but because they know for a fact that the human experience is a deep, deep mystery full of ups and downs and twists and turns and wrinkles and Burmese tiger traps, but what good is life, if you’re just going to sit on the sidelines and cry boo-hoo?

So, it’s hard. This is news?

Okay, okay… I understand the necessity of grasping limitations, but at some point, if you’re going to have a life, you have to grasp all the harder at the things you have going for you, the things that make you a viable human being, your positive qualities and strengths that enable you to see past your limitations… and even turn them around in your favor. No, I’m not really that pleased that I’m at an age when I “should” be able to settle into a comfortable routine and rest on laurels I started growing 25 years ago. No, I’m not thrilled that when my peers are being promoted into higher and higher positions and paying off their mortgages and starting to have grandchildren, I’m still struggling with the basics, like remembering whether or not I’ve shampooed my hair this morning. I’m not at all giddy about the prospect of having to keep lists of really simple crap I have to do for the rest of my born days, in order to get anything done. I would like to be able to kick back and enjoy myself after all these long, arduous years.

But y’know what? That’s not going to happen. Not if I want to have any kind of a life. And it does me no good to sit around boo-hoo’ing about it.

So, what’s the story I want to tell myself today about my life, to get me in gear and make peace with the hand(s) I’ve been dealt? I think about my ancestors, some of the first pioneers who were “sodbusters” in the Great Plains several generations ago. Okay, I don’t agree with them displacing the Native tribes on that land or tearing up the prairie grass that kept the topsoil from blowing away and ending up in the Mississippi, but there’s a quality to their experience and their characters that I need to access for my own purposes.

I come from pioneering stock. The hunger for the frontier is in my bones. My great-great grandparents didn’t cry and moan about having to trek to the outhouse in -40 degree weather and thigh-deep snow to relieve themselves, and they didn’t whine about having to clean up with rough corncobs and Sears catalogs. That’s just how it was. It was the price they paid for the chance to live on the frontier and make their mark and be free to do as they pleased.

They didn’t fuss and fret about tending to wounds without a doctor nearby. They didn’t wallow in self-pity when the grasshoppers devoured their whole harvest. They didn’t freak out when life didn’t work out the way they wanted. They buckled down and did something about it. Or they accepted what was, and they worked at dealing better with it all next time.

In this age of junk food, convenience stores, cheap furniture, easy access to worlds of information, trained professionals whose services are paid for by insurance, and more and more tools to figure out how to live your life, it can be all too easy to forget the element of struggle that life can bring with it. And the harsh reminders can be hard to take. But in the end, life lived thoroughly is often a tough, tough thing to handle, and not everyone is up to the job of urging us onto the high, perilous road that leads to True Success.

Whether they’re professionally trained or in our innermost intimate circles, the people who are trying to help us  might be doing us the biggest favor by not letting us fail gracefully, by not reminding us that we’re diminished, by not accepting our shortcomings as a matter of fact. It might be hard for them to be hard on us, and it might be hard for us to hear what they have to say, but sometimes you just have to bite down on that piece of rawhide, take a long slug of whiskey, and do your best to hold still while your buddy digs that piece of lead out of your arm, cleans it with that stinging sour mash, and ties it up so you can both ride on.

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