So, I have to work… harder

I’m doing myself a favor, today, and doing some job-related work. I am usually working on something or another, and today (while I do other things), I’m running some programs on my work computer, so I have less to do tomorrow. And I don’t feel so far behind.

I have been falling behind at work. I don’t like it, and it’s not making me happy. So, I’m doing something about it. Ironically, what I’m doing is the exact opposite of what others are encouraging me to do — take it easy, don’t do too much, take time off for myself, etc. They don’t want me to get too fatigued. They don’t want me to get in over my head. And they certainly don’t want me to work if I’m not getting paid to do it.

The thing is, not working is worse for me than working. Because I’m feeling the pressure of unfinished work, and it’s messing with my head. And I also hate being so far behind. It’s actually harder for me, if I don’t do the work in advance of the week.

Also — and this is key — because I need to take more frequent breaks, and because I tend to get turned around, I can’t really do the old 9-to-5 work schedule of yore. It’s just not enough time. I need to break up my days into chunks of work and chunks of rest, so at the end of the day, my 9-to-5 work day actually holds only about 6-1/2 hours of productivity. It has to be that way, or I get completely overwhelmed and then I’m really behind.

So, I just extend the work I do, and I break it into smaller chunks. I look at the list of things I need to do, and I break them down into smaller, more manageable pieces, and then I do them bit by bit, in my ‘off’ hours.

This makes folks in my household a bit nervous, as they think that I’m a workaholic and “all I ever do is work!” But it’s not true — I’m breaking down all the things I have to do, to remain a viable employee into bite-size chunks that are not difficult to do at all. And when they’re that small — for example, like looking over a piece of code or reviewing some document or previewing some features I’m supposed to add to a program I’m writing — they’re actually enjoyable. And I feel good getting them done.

I have progress to report on Monday morning, and that makes me feel really good about myself.

It also doesn’t exhaust me, like trying to cram everything into my 9-to-5 schedule does. That’s just too taxing. I’d much rather spread it all out, take my time, and be able to enjoy myself while I’m doing it.

Now, if I can just get my family and my therapist and all the folks around me who want me to “take it easy” to understand this and get off my back. What’s worse — extending my “work day” a little bit and actually getting some stuff done and keeping my job… or “taking it easy” in the name of coddling myself, falling behind, and making me a liability to my employer/group?

That’s literally the choice I have. I choose the former. I have to.

Thinking about my developing coping mechanisms, I must say that I’m none too impressed by the people who advocate slacking off and limiting my activities, for the sake of my well-being. Maybe it’s because my MTBIs are in the past, and I’ve developed coping mechanisms to deal with them, as well as healed up from a lot of my most immediate issues. Maybe it’s because people don’t understand the nature of mild traumatic brain injury and they just assume that once you’re brain injured,  you’re permanently and irreversibly screwed. Maybe it’s because that’s how they would deal with things. Maybe it’s all of the above. But if one more person tells me, “Oh, you need to just relax and take time for yourself,” I think my head is going to explode.

Let me set the record straight — I have a tremendous amount of energy, and I need to use it. When it’s not properly directed, through productive activity and/or exercise, I become very difficult to live with, at times dangerously so, and I don’t feel good about myself. I feel like a failure, and I have the diminished productivity to substantiate it. I need to keep moving. I need to be active. I don’t respond well to languishing for long hours. I just don’t. I’ve got what my neuropsych calls “constant inner restlessness” that propels me forward, and if I try to stop it, I’m just screwed.

For me, being active and doing things that challenge and entertain me and produce some tangible result is taking care of myself. It is relaxing. Yes, fatigue can be a problem for me, but when I break up all my activities and go about them in a piecemeal fashion, I can fit naps in between times.

There’s not much in-between gray area for me — I’m either all-on, or all-off, and I’m sick of fighting it, just because other people aren’t that way. Let them walk a mile in my shoes, then decide if I should live my life like them. I’ve been thinking long and hard about the directions I need to take with my life and my work, and what I come back to, time and again, is that I just have to work harder now. Because I’m not willing to give up on the kind of work I do, I’m not willing to part with the learning and the doing and the tangible results I get from my type of work, but I can’t keep going about it the old way — as in, just working during the appointed hours. I have to work smarter and harder. And I need to do it with joy and intention and simply refuse to give up. I may need to make some changes to my approaches — focusing more on machine-oriented work, rather than people interactions… getting away from startups and enterpreneurial situations and gravitating more towards big, established  companies…. But I’m not giving up on my software engineering or technology. It just has too much to offer me.

I understand that my brain has been changed by multiple injuries. It may have developed “wrong” from a very early age. But by God, I just can’t bring myself to throw in the towel, “adjust down” my expectations about what is possible for me. I can’t live a marginal life, sheltering myself from possible difficulty. I need to be out there, engaged in my own life, making my own way in the world. There are lots of people out there who are a lot less smart than me, who are doing okay. There are lots of people out there who have less acumen, less social ability, less determination, and they’re doing their thing.

Why shouldn’t I? As much as I’d like to play it safe and keep to myself in my corner, I realize that this is not true safety at all. If I have to learn by trial and error (which I always do – and there are plenty of trials and more errors than I care to think about), then so be it.

So I fall… But I also bounce.

Now, back to work!


All new me… all the time…

I have been contemplating my situation as an MTBI survivor pretty intensely, lately. Thinking about how it’s changed my brain — not only since 2004, when I fell down a flight of stairs and smacked the back of my head hard a number of times on the steps… but throughout my entire life. After all, I have had a wide array of injuries — I got knocked out, I’ve had several sports concussions, I’ve been in car accidents, and I’ve had other falls.

Head injury has undoubtedly affected my life, and until a few years ago, I had no idea that the problems I’d always had (but never wanted to own up to) were in fact of a common kind and traceable to common reasons — mild traumatic brain injuries.

The more I realize just how much MTBI has affected me, the more I realize that I really need to re-learn how to walk through the world. Not just because of my most recent accident, but because of a lifetime of TBI-related changes to my cognitive-behavioral version of reality. I need to seriously back it up and rethinking just about everything I assume to be true… because so much of it has been shaped by TBI and clouded by a broken brain… and now I have tools — the Give Back Orlando material as well as other info and tools I’ve come across — to repair some of the damage and renew my life.

Some of the repairs are relatively small – like just changing around some of the things I do when I get up in the a.m. Others are larger, like changing direction with my work and being more realistic about my abilities and inclinations. But the bottom line is, I really need to rethink many of the aspects of my life and not take everything for granted, all the time.

The habits of thought and action I have become accustomed to, may be working against me. I know many of them are. So, I need to fix that.

I’ve recently reached the conclusion that MTBI, as “mild” as it may be, has significantly skewed my perception and interpretation of the world around me and it has effectively caused me to live in a different version of reality than lots of other people. Many situations in my life, I now believe, may have been very different from how I perceived them, which has caused me to grow up with inaccurate understandings of others and my place in the world.

Let me explain — I have always had a heck of a time interpreting people’s social cues. I don’t always understand how to make conversation (correction — I very rarely understand how to make conversation) and I don’t always understand what people are saying to me. This has happened for as long as I can remember. It’s also a point of frustration for people, that I don’t communicate as well as they apparently expect me to (while talking, not when writing – one of the reasons I write so enthusiastically is that conversation and spoken communication is such a bear of an undertaking for me).

When I was growing up I was constantly getting things turned around, and people would lose patience with me. They would raise their voices at me — to get my attention or out of mounting frustration. And I would often startle, because I had trouble following what was going on. I’d then get that rush of adrenaline and heart-pounding and all of that uproar in my head and body that told me “You’re in trouble — they’re mad at you, and they’re yelling at you because you’re a bad person.” I thought I was in trouble — that people hated me. That they didn’t like me. That I was being bad and awful and problematic.

But actually, in some cases, they were just trying to get my attention, and they did it in ways that were less gentle than they could be.

This happened over and over and over again. And over the years, when I was a kid, I developed this godawful complex about  being a terrible person, an ogre, a monster… you name it. I was convinced that everyone hated me — teachers, parents, other kids. A lot of them were unkind to me, especially my peers, but my assumptions about being bad and always being in trouble may not have actually been true.

So, I ended up with a variety of complexes and a nagging suspicion that I was good for nothing and just a drain and a chore for everyone to deal with… when actually, I just had a hard time keeping up, nobody realized it, and they did a clumsy job of bringing me up to speed.

In many ways, I think that my MTBIs had a negative impact on my mental health. Depression and PTSD and low self-esteem have all hounded me my entire life, along with a bunch of other conditions that could be in the DSM-IV, but I’m not looking up for the sake of time. I also don’t want to know. Heck, I’m reasonably functional in basic ways… why belabor it with mental health diagnoses? 😉

One of the other byproducts of this cognitive skewing is that some of my greatest skills and talents have been systematically overlooked and underdeveloped by not only the world, but also myself.

That anosognosia business (not knowing what you don’t know) has complicated my life by diverting so very much of my energy into trying to smooth over and patch up my foibles in the areas where I don’t excel (but didn’t realize it), meanwhile diverting so very much of my energy away from the areas where I have the greatest strengths. 

What a waste. All my life, I’ve been trying to make up for what I lacked, which in many cases just isn’t coming back, and in the meanwhile I’ve neglected the areas where I am strongest… thinking I need to be at least 75% all across the board, instead of allowing myself to be at 30% in some areas, while being at 99% in others.

That deliberate focus on making up for deficits at the expense of raw talent is how people dealt with special needs kids when I was growing up — trying like crazy to get them moderately functional where they were weakest and most struggling… all the while neglecting the areas where they/we were highly, highly, almost eerily functional.

Missed opportunities for the sake of common denominators.  For the sake of my sanity, I just can’t contemplate what that’s cost me…

So, now I’m going to do something about it. Because I can. Because I’m entitled. I have a right to do everything in my power to make the most of the abilities I have, while letting the less-strong areas just be. I have a right to tend to myself and gather all the knowledge I can. Even if  I’m not highly educated in a traditional sense, with all the degrees and the certifications and whatnot, I can be highly educated in a personal, modern sense. There is so much great information out there, and I have a knack for reading and digesting things over time — all the while making use of them.*

*Indeed, one of the things I love about the Give Back Orlando material is that it’s geared for self-therapy, and it never tells you “You’re just a peon without a Ph.D — what do you know!”  Dr. Schutz actually tells us what books we can read, and where we can turn for answers, which is truly amazing in the highly (almost rabidly) territorial intellectual property driven world we currently inhabit.

I’ve got my notebooks, I’ve got my library card, I’ve got my file folders and my lists of issues I need to address. I’m paying attention to myself at a much deeper level than ever before, and I’m determined to work at it as best I can, so I can overcome what’s standing in my way. I’m not just going to roll over, saying, “Oh, well, I got hit on the head a lot over the course of my life, so I guess that disqualifies me from living!”

It’s not about that, with me. Hell no! It’s about taking an objective look at what in my thought processes and behavioral patterns needs fixing – and then fixing it as best I can.

Or compensating for it.

Or avoiding situations that play to the parts of me that can’t be fixed.

I have sustained multiple mild traumatic brain injuries over the course of my life. These injuries have altered my perceptions of life around me and fostered erroneous deductions that have led to poor choices and bad behavior. They have also stoked mental health issues that have their root not in what was done to me or what happened to me, but how I thought about what took place in my life. I am a grown-up individual in my mid-40s who cannot afford to harbor erroneous thinking and poorly constructed patterns any longer.

So, I’m going to do something about it. I’m changing my life, one day at a time. One minute at a time. One experience at a time.

But change it, I will.

Strategies for avoiding TBI overwhelm

I’ve been getting more and more overwhelmed, lately. Things are piling up, and I’m falling behind. Then I melt down, blow up, can’t manage… Not good.

Thing is, I know what to do…

When it comes to avoiding TBI overwhelm, there are a number of things I find quite helpful:

  1. Don’t overestimate my energy. I may want to have energy, but I may not. I need to track my energy, to make sure that it’s not just stress and anxiety and nervousness that’s driving me. I often mistake nervous energy for healthy energy, but nervous energy can cause me to make poor choices that get me in trouble. If I look at my schedule and see — plain as day — I am behind on my sleep, then I need to seriously consider that my “energy” might not be that healthy, and I need to take a break.
  2. Keep track of what I need to do, what I’ ve done, and what I need to do later. I just make lists of what I’ve got going on that MUST be done, and I try to keep the things that I am considering doing to a bare minimum. I carry over the things that I did not get done from day to day, and I track them to see where I’m at. I check in with myself at the beginning of each day, and again at the end of each day, and it helps me keep on track.
  3. Take frequent breaks. Even if I don’t want to. I am getting better at scheduling breaks for myself, so I don’t even have to think about it. I realize now, after years of messing up, that the time when I don’t think I need a break, is usually the time when I do. So, I make myself stop what I’m doing, go do something else — like get a drink of water or a snack or take a walk — and then come back to what I’m doing later on.
  4. Monitor my time usage. See if I’m frittering away time on stuff I’m stuck on. If I’m stuck, I try to ask for help.
  5. Plan for downtime. Seriously. Schedule naps on the weekend. Give myself permission to not do anything at all, sometimes.
  6. Don’t overestimate the patience of others. I have to deliberately cut to the chase much more than other folks do, as my detail-rich brain gets going and I waste a lot of time sifting through info that doesn’t really matter that much, and that others don’t have patience for. In my mind, it’s important, but others get impatient, so I need to laser what I say and talk about — which helps everyone, actually.
  7. Never forget, I’m a TBI survivor, and that has altered my brain in unpredictable ways. Sometimes, the best that I can do, is keep this in mind, so I’m not thrown off by the unpredictabilities of my brain. It’s bad enough that my brain behaves oddly at times — but the worst part is being thrown by it. When I expect the unexpected, I can deal with it objectively, which is critical.

It’s not a perfect system, but it works for me — when I work it, of course.

I just need to do that — and so I shall.

Brain-lock in the “all-clear” position

I have to just quickly post about this, because it’s so applicable to my situation, and it’s so current.

In the Give Back Orlando material, Dr. Schutz talks about how one of the hallmarks of TBI is that the brain gets “jammed in the all-clear position,” and it doesn’t realize that things are amiss, when they really are. An injured brain can keep telling you that all is well, all is swell, when it’s actually not, and you’re screwing up, left and right. As everyone around you is getting pissed off and running out of patience, all the while, your brain is telling you that you’re doing a great job(!) and everything is perfectly fine.

But it’s not.

This is one of the most important features of my life that I have to deal with. It has dogged me ever since I was a kid — never knowing just how well or poorly I was doing (at just about anything) — thinking I was either doing really, really great, or I was doing really, really poorly — and then having the surprise that it was completely different from what I thought.

When I was a kid, it happened to me with social situations, family situations, school situations. I can’t tell you how many times I thought I’d aced a test — I just felt so incredibly good about how well I’d done — only to find that I pulled a B or a C. Now, B’s and C’s aren’t the end of the world. But when you think — and are 100%, totally, utterly convinced — that you got an A+, well, it’s a real shock, and it makes you question everything about what your brain is telling you. I got in the habit of taking lucky guesses, and bracing for the impact of being wrong. Again.

I tell people how it was for me when I was growing up and going to school, and they just don’t believe it. They don’t believe that I never really knew how I did on tests. They just can’t fathom it. Or won’t. I seem so confident, so sure of myself, so competent. Well, yah — on the surface. I know how to do that. The world requires a certain level of bravado and boldness to get by. And people around you respond really well when you come across as self-assured and confident.

But on the inside, it is a totally different story. It’s all a swirling mass of insecurity and confusion and not-knowing that makes me nuts when I haven’t gotten enough rest. I get turned around, if I think through some things systematically, so I don’t think. I just do. And do some more. I have to keep moving forward. So, I just take a guess. And I often get lucky. Or, if I don’t, then I just change directions quickly and try something else. My life is a constant exercise in moving forward… backwards… side to side… but moving. Like a shark. I get into trouble, if I stop moving. I start to sink.

Not that people around me want to hear about it. For some reason, they just cannot / will not believe me, when I tell them that a lot of what I come up with is just pulled out of thin air.  And they don’t want to hear it, when I say I haven’t understood what people have said to me at work all week. They just can’t hear it. I think it terrifies them, the prospect of living in a world where you don’t understand very much of what people are saying to you – like moving to a different country where they speak a language you’ve never heard before. If I were deaf, at least then people could cut me some slack and understand that I have a different way of communicating. But I’m not deaf. There’s nothing wrong with my hearing. There’s just something screwed up about my comprehension.

To some people, it might sound scary and awful. But that’s just how it is. And I have to look at it. It happens to me in adulthood, not unlike my childhood. I get turned around. I can’t understand what people are saying. I get lost and off track.  I try talking to people who know about my TBI history, but they don’t want to hear about me having big problems. I’ve been having big communication problems at work for the past six weeks — and some of the problems are persisting, no matter how I try to overcome them. I need to discuss this with my friends/family, but they keep trying to reassure me that all is well, and I “can do it”.

I know I can do it. Eventually, I’ll get it together. But right now, I’m really struggling, and it can be dangerous for me to go around saying “I’m fine!” when I’m really not. Much as I want to be a success and not fail, if I persist in pretending all is well, I run the real risk of losing this job. I can’t do that. I can’t keep pretending, even if for the sake of looking like a success and putting others’ fears to rest.

I need to take care of myself by taking an objective look at what is going on with me, so I can do something about it. I didn’t get this far in life by hiding from my difficulties. They’ve been very well hidden from me, by my happy-tbi-head, but since I’ve found the tools over the past many months, to identify my issues and deal with them, they’ve been easier and easier to spot. And deal with.

And I need to deal with them. I would love to tell everyone around me that I’m settling into my new job really well and it’s going along swimmingly. But it’s not true. My happy all-clear brain doesn’t pay any attention to the trouble I’m getting into, and it tells me I’m doing great! But I’m having real problems keeping track of things and keeping on schedule with important deliverables. The things I’m working on affect hundreds and hundreds of my co-workers, and their products affect literally millions of customers, so I had better get my act together and get back on schedule!

Failure is not an option.

I must manage my difficulties and develop workable strategies.

And I can’t waste time feeling bad about it or avoiding it or listening to my happy-all-clear brain spouting its cheery crap. And I certainly can’t let others’ fears keep me from making positive change in my life.

I have a life to live and a history of head injuries to deal with.

Time to get real.


The problem with sunny summertime

Checking my blog stats, I see more and more people are finding their way here when searching for info about “light sensitivity”.

Well, it is getting to be summer, after all, which means bright, bright days that are getting longer and longer.

I don’t usually think of myself as being light sensitive — or “photosensitive” — but one sure way to push me over the edge, is by subjecting me to constant exposure to bright light without my sunglasses. If I spend time outside on a sunny day without wearing sunglasses, I become highly agitated and frantic and hyper-reactive. I blow up very easily and melt down easily, too. It’s embarrassing, to be so sensitive to light and not be able to “keep it together” over something as basic as a sunny day, but there we have it. I’m light-sensitive, and that’s that.

To cut down on the impact, I wear amber lenses, which block out certain spectra better than gray or green lenses. I didn’t realize that this was objectively true, till recently, when I read that amber blocks certain spectra better than others. All I knew was, amber lenses “felt better” to me.

I also wear prescription sunglasses that have larger frames than are fashionable, these days. My frames are actually about 20 years old, and I bought them when I got my first expensive eyeglass frames. I have taken really good care of them, because I paid (at that time) almost half a week’s salary for them — I didn’t have a job that paid that well, but I wanted to get a really good set of glasses frames, so I did. Needless to say, those frames are very precious to me and I go out of my way to take really good care of them.

The thing is, they’re not very fashionable. They look very 1990, being large and round, not like the current trend which is short and rectangular. If I went with smaller frames, however, I wouldn’t have the kind of protection from light that I need. I need larger frames, so I forego fashion to keep myself sane.

Light sensitivity is a crazy thing…  And — like so many other issues I have — it sneaks up on me, when I’m not paying attention to it. So, I pay attention. And it pays off.

Completing the rewiring

Well, my old therapist (OT) has now retired, and it’s time for me to get on with my life. OT helped me a tremendous amount, while I was dealing with the initial shock and dismay of the dawning realization that all has not been well in my life, in many respects… and head injuries had a lot to do with it. The availability of a living, breathing person who could sit with me while I talked my way through the ups and downs of the past couple of years was incredibly helpful. And I will miss OT keenly. I already do. My New Therapist (NT) is smart, highly educated, experienced, and apparently quite aware of the level of foolishness that can come from my mouth at times. OT has already talked me back from the edge of really ill-informed decisions/actions several times, and I’m the better for it.

Much as I do mourn the loss of OT — and it is a loss — I do want to get on with things, and stop spending so much time getting in touch with my emotions. I have logistical issues to address that can’t wait. And I need to work with someone who understands that, who understands my unique mental health profile in terms of physical injuries, rather than mental illness of some kind. There are actual structural issues going on with me that have mucked up my thinking and decision-making for a long time, and I need to get myself on a better track.

NT is helping me do that, as only a neuropsychologically oriented therapist can do. A regular “talk therapist” — no matter how kind-hearted and well-intentioned and psychologically experienced — will be limited in what they can offer me… unless they really understand the TBI aspects of mental health.

See, here’s the thing — after having gotten hit on the head a bunch of times as a kid, it seems to me that my development was altered by those head injuries. The thoughts and impressions I had, growing up, were skewed by my traumatized brain, and because I was reacting to and dealing with situations that weren’t actually “true” representations of what was going on, my social and emotional development got skewed, as well. I had such intense, precipitous reactions to so many things, when I was a kid… and that certainly must have shaped me in unique ways. I think it’s fair to say that when I was growing up, I was having a very different experience of childhood than my siblings and peers, so that shaped me in very different ways into my teen years and my adulthood. Which made me a different kind of person — a kind of person very few people understood that well. I’m not sure anybody did, to be honest. Including myself.

I suppose you could say I was developmentally delayed in some respects.  But in others, I leaped ahead of everyone. Looking around me now, I can’t say that my different development has handicapped me. But it has skewed my perception and interpretation of reality — or, at least, my life experience. And because of that, approaching my emotional and mental health is a different matter than doing so with other people who grew up in regular ways with un-injured brains.

Working my way (slowly) through the Give Back Orlando ebook  Self-Therapy for Head Injury I’m really struck by the talk about how an injured brain can get jammed in the “all-clear” position and not realize that it needs to go from autopilot to thoughtful/careful mode.

I quote from Chapter Two: Head-Injured Moments:

~Note: (bold) is mine~

Most of the head-injured moments happen at times when thoughtful/careful mode is needed but the damaged brain doesn’t see that. The most serious problem in TBI is the breakdown of the system that watches to see when thoughtful/careful mode is needed, when the automatic pilot needs to be shut off. After TBI, the brain misreads the situation, fails to see the need for thoughtful/careful mode, and instead stays on automatic pilot. That causes the person to say or do things impulsively, while feeling as if what he or she is saying and doing is perfectly correct. The behavior comes out wrong, but the survivor is left feeling confused about why everyone is getting upset. The reason why is that we are expected to shut off the quick-and-dirty autopilot mode when something important needs to get done properly. In ordinary life, only a slob, or a jerk, or a loser, or a person with a bad attitude–someone who doesn’t care enough to be sure to get it right–would use the quick-and-dirty method when the stakes are high. Consequently, employers, friends, and family end up getting annoyed and then outright angry with the survivor for being so careless. It may take months or even years, but eventually the people in the survivor’s life begin to give up on him/her because of this failure to use normal quality control, this failure to try hard enough to get things right that really matter. Even though the head-injured moments are rare, they have a huge impact over the months and years. And if you watch for them and write them down, you can start to learn how to fix them.

This is really big for me — the last part, especially. It’s big, because here is someone who clearly knows about the chief vexation of my life — my repeated experiences with screwing up without intending to or realizing I had, until after the damage was done… after the words were said or the job was mucked up or the story/joke was told wrong or the errand was forgotten. And the experience of having people just give up on me over time. Parents, teachers, bosses… all the folks along the way who had such high hopes for me, only to see me mess up, time and time again, for no apparent reason.

Laziness? Carelessness? Cluelessness? Who could say? All anyone knew was, I screwed stuff up. All I knew was, if I was given something to do, chances were, I’d mess it up royally the first time around… and have to work my way back like crazy, just to get back to an even keel.

The one thing I’ve had going for me, over the years, is my indomitable spirit. Nothing gets me down for long — not sure if it’s a superior character or the inability to maintain my focus on negativity for very long 😉  (There’s something to be said for being easily distracted — my attention can be pulled away from misery just as easily as it can be pulled away from a task I’ve just started, which is an added bonus.) I’ve always had this sense that, if I just kept going — and used whatever resources were given me — eventually, if I just stuck with it and didn’t quit, I would find a way through.

And it’s been true, for the most part. I still mess up… but I’m doing something about it. And the Give Back Orlando material is an amazing tool to help me take my recovery even further. (Please keep in mind, that I’m only two chapters into the Self-Therapy guide, so my opinion may change later.)

Anyway, back to the rewiring…

I’ve felt for some time, now, that traumatic brain injuries need not be final. Ever since I read Norman Doidge’s book The Brain That Changes Itself, I’ve been convinced that TBI is not the end of the story. Now certainly, some brain injuries are so severe and so thorough that there’s no turning back. But in countless cases, I believe that neuroplasticity (where the brain rewires itself or re-routes/re-maps certain functionality away from injured parts to healthier, more capable areas) can result in restored abilities. The abilities may not be the same, but they don’t have to be gone forever. Different parts of the brain can literally step in to pick up the slack for injured parts… those “parts” being somewhat diffuse and multidimensional in the brain’s own mysterious, inimitable way.

There’s a whole lot to this concept of neuroplasticity — more than I have time and space (and available memory) to fill in here. But the bottom line is, the brain is capable of rewiring itself. And when you sustain a TBI, whether it’s mild or moderate or severe, rewiring is necessary, in order to regain functionality. If the brain doesn’t get rewired, if it doesn’t heal, if it doesn’t evolve and shift to rise to the demands of life outside the skull, then you’ve got problems.

And when you’ve had a TBI, you often don’t even realize that there are problems to be dealt with.

So, you end up spending an awful lot of time wondering why people are mad at you, why your life is all turned around, and where all the money in the bank got to.

I’ve been in that type of situation more than I care to admit. And I still have a lot of territory to cover. It’s a bit daunting at times, because the skewed interpretations of “reality” began with me at a pretty young age, and I have been intermittently (and unpredictably) misreading signals for a very long time. But the point is, now I know there could be — and probably are — issues with my perception that need to be ironed out. I now know that my brain needs to be retrained. Remapped. Rewired. It’s been getting rearranged, on and off, for over 35 years, now, and I still have a ways go to before the wiring is “up to code.”

Now, I know that this “job” of living my life is never-ending. But I like to think of it as a Herculean, rather than Sisyphean, effort. Hercules was the guy who completed his 12 tasks and cashed in. Sisyphus was the guy who kept rolling that boulder up and down the hill, over and over, for ever and ever, no sooner getting it to the top, than it rolled back down. At times, I’ve felt like Sisyphus, but that’s been a feeling, not a fact. In truth, my Herculean efforts — fighting monsters and hauling heavy loads and plowing fields and whatnot — have paid off a great deal. And for all my screw-ups, I have had a lot of successes.

That’s what I need to remember at times, when everything seems to be going to hell, and I’m sitting around feeling sorry for myself. Woe is me… my therapist has left me… woe is me… I’m getting confused and turned around at work… woe is me… I’m exhausted and can’t seem to sleep through the night… woe is me…  Yada yada yada…

This life is a work in progress — emphasis first on work, then on progress. But it is both. I am no stranger to hard work, and I’m not afraid to get my hands dirty. I’m also not afraid to look at my demons and dance with them. I’m not going to let them lead me on the dance floor — this dance is more modern and interpretive than a tango or walz. But it is a dance, no less.  And I need to not get my heart set on sitting on the sidelines while the best that life has to offer passes me by.

Certainly, there is a lot of work to do. But might it not be possible to have a good time, while I’m working? I grew up in an area where there was a lot of farming… a lot of work. People just did what they had to, and you didn’t bitch and moan about the loads you carried. Everyone just assumed that life was full of heavy lifting and hard lessons, and nobody mooned and boo-hoo’ed and wailed and gnashed their teeth about it. Life = Work. That was the deal, and if you didn’t like it, well tough nuggies.

Consequently, people went out of their way to figure out how to make that working way of life into something rewarding and uplifting and fulfilling. There was family and church and good food and community activities and service. There was reward in doing good work and in a job well-done. People didn’t try to get out of doing things — they found ways to make doing things more enjoyable. By turning on the radio. By singing. By coming up with games to play while finishing a job. By contemplating some idea. Or just by getting into the business at hand and immersing themselves in it 100%.

In a way, I miss that orientation in life. The area where I now live is full of great people, but a lot of them are well-to-do and spoiled and unaccustomed to hard work. They somehow think they’re exempt from exerting themselves. In fact, much of this country seems to be like that. People are so accustomed to convenience and customization, they just assume that all the world is going to modify itself to meet their specifications. They’ve had hardship in life. They’ve suffered. People have been unkind to them or hurt them — physically, mentally, spiritually, emotionally — and they deserve a reward or a “break”. And I find myself sometimes slipping into that frame of mind, too — because I’ve had unfortunate things happen to me, I should be somehow compensated. I should have an easier schedule. I should get accommodations from loved-ones. I shouldn’t have to work my ass off to do  basic things that come easily to others. I should… I should…

But that’s crap, and I know it. I’m a worker, at heart. I grew up working, and I feel most fulfilled when I’ve gotten to the end of a day with all my tasks completed and something to show for them. I don’t shy away from hard work — I embrace it and seek it out. If I hadn’t been head-injured so many times over the course of my life, I might have an easier time of making the most of my abilities, but that’s not how things turned out, and it’s counterproductive to focus on that what-ifWhat-is interests me a whole lot more — what I can do, what I can do about my situation, what I can do to improve, what I can do to salvage and redeem the aspects of myself that really struggle at times.

I’m a worker, plain and simple. And I feel best when I’m not shying away from the challenges that present themselves to me. Everybody has some burden they must carry — whether obvious or hidden. I’m not exception, and I haven’t been singled out by a vindictive universe or a punishing Higher Power as punishment for some “sin” I committed in the past. So, I have it hard at times. So what? Who doesn’t?

I guess the main thing about all this, is figuring out not how to avoid difficulty and challenge, but how to make difficulty and challenge work for me. How to have fun with it. How to be uplifted by it, not dragged down. For me, it’s all about transcendence. It’s not like I’ve got all the time in the world to waste. I do have a lot of issues. I have a lot of pain, I have a lot of confusion, I have a lot of frustrations and anxiety, and I’m at a big cross-roads in my life with no idea which way to turn.

But I’m still here.

A friend in their 70s said to me recently, “Don’t forget to have fun, while you can. Life passes so quickly…” It’s true.

Note to self: Today, have fun! No matter what.

Resources for Brain and Spinal Cord Injury

I’m posting this here, so I can find it later

Resources for Brain and Spinal Cord Injury Research

It’s got all sorts of links and other goodies — just the ticket, for when I need to distract myself – which is not always such a good thing, I’ll admit 😉

Constant vigilance is the price…

I had a great long weekend — in some ways.

In other ways, it was totally harrowing.

I spent much of Saturday and Sunday “playing hookey” — not doing the things I had on my calendar, like chores and odd jobs. Not sticking with my schedule. Not doing my “logistical hygiene” — like checking in with my planner before, during, and after the day is underway and doing intermittent “spot checks” on my energy to see how I’m doing — that I usually do to keep functional.

It was the long weekend, after all, and I was tired of being so responsible and mindful all the time.

At first, it was fun. It was relaxing. I felt like I was off the hook. I did some of what I needed to do, but I didn’t pay any attention to my daily minder. I just went with the flow, relaxed, tried to just unwind and not live like a “special needs” person. I was tired of being so vigilant all the time, feeling like I couldn’t make a move without some sort of assistance from a calendar or a list or whatever. I just felt like a loser.

But by Sunday, I started to get really tired. And I started to get out of sorts. I didn’t sleep well, and I got more and more irritable. I tried to fend it off and keep up and happy and chipper — it was such beautiful weather all weekend! I just wanted to enjoy it — for once, without needing to “ride herd” on all my issues. But I was so tired by Sunday afternoon, that I had to just stop everything and lie down for a nap. I had a heck of a time making any kinds of decisions all day Sunday, and the harder a time I had, the more turned around I got, and it totally took the spunk out of me. I felt like a failure for not being able to make up my mind about what I wanted to do on that beautiful Sunday afternoon, and I felt like a failure for not being able to get through the day without needing to sleep. I even felt like a failure for not being able to sleep in, in the morning. I wasn’t very kind to myself, and that exhausted me even more.

Sunday night, I was just depressed, on and off. And I didn’t go to bed at a decent hour. Again.

And then I really paid a price for my laxness on Monday. I was deeplly depressed, I missed my deadlines for submitting my timesheets for work (which could mean I don’t get paid this week, which would be BAD) and I barely managed to get hold of the folks who do payroll in time for them to put me into the system… I didn’t get everything done that I needed to get done. And I felt awful about just about everything. Just not good.

I realized how much I’d fallen behind with basic stuff I needed to do — like sell some stuff, so I can get a little bit out of the financial hole I’ve gotten deeper into over the past three years, including my amazingly beautiful, feather-light, high-end road bike that I can’t ride anymore because of balance issues and the increased danger of sustaining yet another head injury… the extra lawn mower I haven’t gotten around to parting with, and the perfectly good chainsaw that’s been sitting in my garage for three years, because it’s not safe for me to use it anymore (but part of me can’t let go of the idea of just going out and cutting firewood whenever I like)… and keep up with my work… And tend to my home life and return library books and do just really basic things like help get supper on the stove at a civilized hour.

My schedule was completely off all weekend, and what started out feeling liberating turned out to be a bad experience. And I lost out on what could have been a really great weekend. My loss. Big time.

It’s been said, “Constant vigilance is the price of freedom,” and it’s true. Now, what must I do today? Let me check my daily minder…

I really need to feed myself

I’ve been working my ass off, lately, being busy-busy-busy, and I’ve developed a nervous twitch on the right side of my face, so I know I need to do some “radical self-care”. Switch gears. Change direction. Take a break.

I did take a nap this afternoon, which is good, but it was only an hour. I feel like I need more.

I’m getting increasingly worried about money — who isn’t? I had a dream last night about not being able to find or keep work, having to dress in “drag” as a member of the opposite sex, in order to get hired, and having to switch back and forth between being a man and a woman, in order to make a living.

It’s sorta kinda freaking me out.

Not that there’s anything wrong with being a member of the opposite sex, but the pressure of having to pretend to be something I’m not really made me nuts in the dream. And, like so many other Americans these days, I worry a little more each day about being able to make my mortgage payments.

Well, I’ve been in really tight spots before, and I’ve always managed to come through. I just need to keep my head clear and steady and keep putting one foot in front of the other. Stay loose. Stay as relaxed as I can. Do relaxation exercises — deep breathing, too — to keep my parasympathetic nervous system engaged, and keep my whole system from frying. Keep doing my job at work, and keep my resume fresh and up to date.

Just tend to the basics, and don’t take anything for granted.

Double-check my assumptions — especially when I’m positive I’m 100% correct.

One way or another, things will work out.

I have to believe that. Or else.

And I have to keep my strength up. I’ve been working, working, working, yes, but sometimes a person needs to play. I’ve been focusing so intently on all the stuff I’ve got to fix, that I have at various points along the way, failed to acknowledge the things that are going right with me. And I’ve not always give myself the chance to recover and recuperate from my mad-and-intense drive to make right the things that go wrong with me.

But if the central nervous system has anything to teach me/us, it’s that you can’t keep going-going-going all the time. At some point along the way, you really need to take a break and let yourself get back the reserves you’ve depleted along the way. That means taking more naps. Eating good food. Getting to bed at a decent hour. And not getting down on myself for cutting back on my activities.

Just today, I cut short an outing that was starting to wear on me. It’s a beautiful day here, and I wanted to be out and about, active and engaged and having a grand time. But I just couldn’t. I ran out of steam. I lost my temper a few times. I got overwhelmed by all the activity around me, and I realized I was really tired and needed to sleep.

So, I had someone take me home and I took a nap. I needed a longer one, I think, but I did get about an hour’s worth of sleep, which is something.

I need to feed. Restore myself. Get back what I’ve spent. Replenish my stores.

I need to feed myself, so I can be human again.

Getting on with just living life

I had a good session with my New Therapist (NT) today. They say I seem to be doing really well, and I’ve really turned around my feelings about work and my ability to deal with the stress, with “lightning speed”.

I guess that’s gratifying… I almost question it, however. No… wait. I don’t question it. I have come to terms with a lot of difficulty in a really short time, and it feels good.

Now, if I can get my head together around my neurologist…

Basically, I’ve been seeing a new neuro for some other issues I’ve been having, but they’re proving to be less logistically helpful, and they seem to think that my difficulties are psychological.

Ah, yes… that again.

I suspect — if I turn out to get a regular neuro at all — I’ll end up going to someone with a whole lot more familiarity with TBI than this one. I’m still looking for someone who can help me with the neurological aspects of my situation, but I’m not getting much support, either from the medical community or my partner and some of my friends, who would just love it if I just let all this diagnostic stuff drop.

And to be honest, I probably would, too.

It’s all well and good to observe myself regularly for signs of things that need fixing, but sometimes a person just needs to get on with life.

Lookit — It’s Memorial Day weekend. The sun is out, the skies are blue, the trees and grass and all the living things are just exploding with life. Why spend all my free time sitting around contemplating my issues?

Why indeed?

Okay, so I get what Give Back Orlando is all about – watching yourself regularly to identify head injured moments and do something to address them. But I’ve been doing that for quite some time, and at some point, I just need to take a break. Read a book for fun. Play some cards. Watch a movie. Maybe even go for a walk. Just have fun. And so some writing that isn’t all about my deep dark issues.

There’s an idea…