Not in the mood today

TBI Myth #4: The Lourdes Phenomenon (or... Don't Expect Miracles)

Monday… again?

It’s Monday, and normally this does not bother me.

But today, I’m not feeling it. I think it was the long walk in the woods yesterday that was so excellent, I did not want to come out.

That, and the continuous drudgery of my work. Right now, it’s pretty much of a slog, and I’m not feeling all that inspired or motivated. Not that it should matter — I always do what needs to be done — but today got off to a rough start, from the moment I woke up.

One of the things that’s on my mind and dragging me down, is that I have a neuro appointment coming up in a month. Glory be… I guess. I want to make sure the tremors and headaches I’m having are not something serious to be concerned over, and it would be nice if I could get a break from the pain… so I need to go. I’m actually looking forward to going.

Except that now I have to be all cogent and what-not, and be able to communicate. I haven’t been feeling all that coherent, lately, and I’ve run into some “speed bumps” with my neuropsych, who persists in interpreting my symptoms as primarily psychological, rather that neurological or biochemical or physiological. So, I feel like a head-case when I talk to them. And they’re compiling a “comprehensive” profile of me… which makes me incredibly nervous that my neuro will head off in the wrong direction and I’ll end up on yet another boondoggle, like I did 25 years ago after a car accident when I was wiped out with chronic pain.

Oh, screw it. I’m going to work. I’m going to focus on what’s in front of me, and let that be that. I’ll cross the next bridge when I come to it. Main thing is that I stay rested and drink plenty of water.

On-ward.

The long, slow road back from TBI

Making my way along this road … as best as I can

Last night, everything kind of caught up with me. For some reason, I was so desperately sad and felt like I was giving up. I don’t know where that “came from” — I had a pretty good weekend, and I took it easy, did things I wanted to do, and I got a couple of much-needed naps in.

But by Sunday night, I was just so sad… feeling washed up, small and vulnerable. And I wept inexplicable, bitter, mournful tears for some time, before I finally went to sleep.

One of the things that pulled me down was actually a good new development in my life – cutting out all the busy-ness to keep my mind and attention occupied. I have used the stress of loading up on tons of projects to not think about the pain I’m in… get my mind off the confusion I feel… give myself some direction and hope for the future. Over the past week, I have realized just how fruitless this approach ultimately is. It actually keeps me from completing anything, and the purpose of it is not to accomplish, but rather to keep busy.

Some people use video games and Facebook to take the edge off their existential angst. I use projects.

And ultimately, we all come back to the same conclusion — everything ends, in the end, and we have nothing personally to show for it. Yes, we may make some amazing contribution to the world, but honestly, you never know how your work is going to impact anyone, and you never even know if people are going to really “get” what you’re doing.

So, for me, the only thing to do is focus on the present, what’s right here in front of me, and really soak it all up as best I can, so that my life experience is full and rich.

Reading that sentence I just wrote, it sounds like I’m giving up… that this “only thing” is a capitulation of sorts… a surrender to the anonymity and pointlessness of life. But it’s not that, actually. I may feel like I’m giving up inside, but this approach is actually the thing that can save me — it’s the thing that has saved me on this road to recovery. For all the different rehabilitation techniques used by professionals, it seems to me that the most useful and most important approach — which we can all use ourselves — is to pay intent, rapt attention to the world around us, really get involved with that world, and bring ourselves along with that attention.

There are a number of reasons I believe this works.

First, it trains you to pay attention.TBI makes you extremely distractable and vulnerable to overwhelm, so you have to build back the neural networks that make that possible. It doesn’t happen overnight, so you have to keep at it, keep trying it.

Some people meditate, which has been shown to really strengthen the brain in important ways. For me, sitting for long periods of time is both uncomfortable and cuts into the free time I have to do things I love to do (instead of what I have to do for my job), so I choose to focus on the amazing world around me, instead.

Second, it slows you down, which we all need to do,TBI or no.

Too much busy-ness makes us more prone to fight-flight tendencies, and that blocks our brain’s ability to learn. TBI recovery is all about re-teaching your brain to do things that used to come naturally, so if you can’t learn because you’re constantly marinating in adrenaline and cortisol and a bunch of other stress hormones, it will make your recovery more difficult.

Third, concentrating intently for periods of time on things that you enjoy watching (or love to do) develops new pathways in our brains.

You have to take frequent breaks, so you don’t wear yourself out and make things worse in the long run, but finding something that really grabs your attention and exploring that, experiencing it, and really getting into it, does wonders for an addled mind.

And last but never least, repeating those same activities at regular intervals makes those pathways permanent in ways that restore our Sense Of Self and make us feel like ourselves again.

The things we do over and over again — the thoughts we think, the feelings we feel, the activities we pursue — all make us what we are. They let us recognize ourselves over time. Repetition promotes familiarity and mastery. Mastery feels great. Feeling a sense of mastery and familiarity does wonders for your Sense Of Self, your self-confidence, your self-esteem.

Even something as simple as sitting still and watching the colors of the sky change during a sunrise or sunset, can bring you back to yourself. You just have to do it with all your heart and soul. And get plenty of rest in the process. It is a long and winding road, and you have to be careful that you don’t fall into the cracks and chasms along the way. You’re gonna fall in, now and then, but you can pull yourself out once more. That’s just how it goes with TBI recovery.

Or maybe any recovery, for that matter.

In the end, for all the advancements in rehabilitation and all the different approaches you can take to get yourself back, there’s nothing like just living your life and letting all the lessons sink in, to get you on down that road. There’s no guarantee that the road is ultimately going to be perfect. Life does what it will do. But we can definitely develop the skills to roll with it and handle it in ways that make us proud and happy and feeling — at least somewhat — like ourselves again.

“What are your goals for care, and how can I help you to get there?”

The road to recovery … long, winding, not always with an end in sight

This is the question just about every patient wishes their doctor or other healthcare provider(s) would ask them.

But they rarely – if ever – do.

I’ve never been asked this question myself, and I wish to high heaven I had been.

It would have gotten me thinking. And that would have been a good thing. Because it would have gotten me thinking about the right thing(s), from the get-go.

What did I want from care, and how did I want my healthcare provider(s) to help me get there?

I rarely, if ever, thought in such specific terms — partly because I didn’t have much past success with A) identifying goals, and B) achieving them. Outcomes were something general, something approximate, that amounted basically to “I just want to feel better,” without ever fully realizing what “better” meant, or how it would really feel to be that way. Expecially with TBI, everything was such a blur, such a source of confusion. But if you asked me a specific question and gave me something focused to react to… then I had a fighting chance.

More than 10 years after my last TBI, I can hardly believe what a difference an active recovery has made. It’s like night and day, compared to how I was before. Yes, I still have my issues, but now I know how to handle them, and they’re not as much of a killer as they were before.

There have been specific things that have helped me:

  1. Actually realizing that I was struggling with issues related to mild TBI.
  2. Learning about the details of those issues and understanding how they affected me each day.
  3. Actively working, each day, to come to terms with them, work through them, and learn to live better, a little bit at a time. Keeping notes. Or not keeping notes. Tracking the results of things I try, and trying again when things get screwed up.
  4. Having someone to talk to regularly about my life, focusing on my progress and positive experiences. Just practicing talking to someone on a regular basis — someone who is not in my immediate social circle, who is interested in the same sorts of things that I am — philosophy, quantum physics, human performance — that has been hugely helpful for me.
  5. Blogging about the things I have a hard time discussing out loud.

I’ve been looking back and past posts I’ve done, and it’s pretty amazing how much things have improved with me over the past seven years. I started blogging in earnest in 2008, and reading what I wrote then sounds like reading what a child wrote, years ago.

I guess I was a case of arrested development, back then. Really cut off from the world, by choice as well as by default. Overwhelmed. Unsure. On the defensive about, well, everything. On my own, in more ways than one.

Anyway, I seem to have veered away from my original topic — what healthcare providers could/should ask us about what we want and how they can help. I guess my point is really that through it all, I’ve had to help myself. And that hasn’t been all bad. I’m not sure my neuropsych or doctors have had a clue what was really going on with me in my experience. Whatever. I knew. And I dealt with it, when they couldn’t (or wouldn’t).

In any case, I’m a whole lot better now. Getting back to myself. Getting back my Sense Of Self. Slow going, but at least it’s going… Whether or not anyone is offering to help me in a professional capacity.

ON-ward.

Seldom recognized – the impact of physical issues after mild TBI

It starts in the brain and moves from there…

I’ve been working on final edits of a book I started writing in 2008-2009, about how sensory processing difficulties affect one’s frame of mind and psychological state. It’s called “The Deepest Day” and it draws from both my own experiences with light, noise and touch sensitivities, as well as vestibular (balance) issues, along with a fair amount of research I did when I was trying to understand what was going on with me… and why I felt so terrible all the time.

Sensory processing issues (or Sensory Processing Disorder / SPD) can have a lot of sources. And it’s often mixed up with autism, ADHD, and other conditions. When I first came across it, I felt like a door had been thrown wide open to a shadowy part of my life. Suddenly, so much was clear.  I did write a bunch back of posts in 2008, 2009, 2010 about sensory issues, and I’ve written a lot more about particular issues, but it all got too overwhelming to think about. I got turned around by all the talk about what it’s all about, the politics of it, the healthcare territorial disputes, and so forth, and I had to take a break and focus on other things. So I stepped away from the research and focused on my daily life. Plus, the proverbial ship of my life was running into some proverbial shoals, so I had to focus on what was in front of me, day to day.

Still, knowing one of the main sources of my distress was hugely helpful, and it made it possible for me to take corrective action that — no joke — has changed my life dramatically for the better.

I’m inclined to believe that my sensitivities are related to all the times I’ve gotten clunked on the head. I have had a number of mild traumatic brain injuries over the course of my life, starting when I was a young rough-and-tumble kid, and from what I read about TBI, sensory processing difficulties often go hand-in-hand with TBI. When I read the “laundry list” of possible symptoms/issues following TBI, all the physical issues read like a narrative of my life. For as long as I can remember, I’ve had sensitivities to noise and light and touch. I’ve also had severe balance issues for a long, long time. I never really understood what was happening with me when I was a kid — or as an adult. All I knew was, the whole world seemed like a hostile, hurtful place.

And for me, it was. When sound hurts your ears and light hurts your eyes — not always to the same degree, and not always in a predictable way — and it hurts when people touch you, the world turns into an ordeal to be survived. And that colored every aspect of my relationships to life and the people in my life.

Looking back now, I realize that people weren’t trying to harm me. They were just doing what people did. And they had no idea how much it was hurting me. If they had, they would not have done it, I’m sure. A lot of people have loved me over the course of my life — they’ve really cared for me and tried to show it in kind and caring ways. But those ways hurt me, because of my sensitivities. And because I didn’t understand the nature of my issues — nor did I know how to address them — every interaction with other people was a struggle to be survived.

When I first wrote The Deepest Day in 2009, I had to walk away from the book. Seeing in words what a usual day in the life could be like for me… it was just too much. It’s one thing to deal with constant pain and discomfort, as well as balance issues. When you’re in the midst of it, it’s just there. It’s just how things are. But when I stepped away from it and looked at everything as an observer, the sheer magnitude of my issues was simply overwhelming. And I had to stop thinking about it.

I tried to write the book in different “voices” — as both a man and a woman. I wrote it as a first-person masculine “I” speaking. Then I changed it to a masculine third-person “he/him” narrative. Then, after studying a number of different books and papers and reading different accounts, it occurred to me that the way people talk about sensory processing disorders seems to differ between men and women. The way people talked about sensitivities with women seemed in some ways to be more alarmist, yet also more dismissive. I have a big problem with the differences in quality of healthcare for men and women, and I believe that starts with how we conceptualize “men” and “women”. So, I rewrote the book in a female first-person voice… then changed it to a third-person “she/her” narrative.

I also experimented with second-person “you” storytelling, putting the reader directly in the shoes of the main character. But that felt too strained. So, now I’m rewriting it in a neutral gender (very similar to this blog), so that readers can make the main character any gender they want, and experience the book in the way that makes the most sense to them.

Anyway, gender and healthcare aside, the book is finishing up nicely, and looking closer now, I can see how close I was to being done, back in 2009 before I stepped away. It was just too much for me, I guess. And I also needed to do something about those issues.

I have done something about the issues, since then, and it’s made all the difference in the world. I will be the first (and possibly only) person to tell you in writing and for all the world to see that when it comes to TBI, sensory processing issues can be a massively complicating issue which completely mess with your head in ways that can easily be mistaken for psychological issues. In fact, sensory issues do produce psychological issues, but in a way that is hidden and hard to diagnose by the folks who are looking at your state of mind.

Healthcare providers and psychologists just don’t seem to be trained to deal with sensory processing issues, and like me, a lot of people can end up going down psycho-drama ratholes, looking for emotional or relational sources of psychological disorders which in fact have a physiological basis. That whole mind-body thing…

And when you are working with a psychologist who has a poor relationship with their own body… then things can really get clouded.

Because chances are, they’ve trained themself out of even remotely considering their physiology, when it comes to their psychology. Dealing with their body is not “safe territory” so they avoid it because their own fears and anxieties keep them from conceptualizing clearly and cleanly.

That doesn’t make our physical experience any less impactful. If anything, it just heightens it. And The Deepest Day really brings that home for me. Just thinking back to how off balance I was, how nauseated I was all time time, how turned around and dizzy and in pain I was… and then you throw in the light and noise sensitivity on top of it, and whammo — you’ve got yourself a potent recipe for a messed-up head.

Personally, think that TBI recoveries are impeded by physiological issues more often than most folks can guess. Here’s a “mind map” I created of the issues, back in 2008. It’s still relevant today.

How one thing leads to another

How one thing leads to another – click the image above to see the whole map

Those physical problems add stress to our systems, and when stress is in the mix, it makes it more difficult to learn. TBI recovery is all about learning and re-learning how to live your life effectively, and if your ability to learn is impeded in any way by environmental stress, well then, you’ve got yourself a prolonged timeline for recovery — if you have recovery at all.

That’s what was happening to me in the years after my fall in 2004. I was having more and more problems that were more and more stressful, and although my neuropsych says that my actual functional capabilities were not completely wrecked, and my difficulties arose from the way I was conceptualizing and relating to my injury and life situation (I’ll rant about that later), the stresses around the experience were adding up in ways that made things increasingly worse over time.

The impact of my injury was disproportionate to my actual injury, and after searching high and low like a possessed person for years, I can tell you exactly why that was, how it happened, and how I dealt with it all to get where I am today — happier, healthier (for the most part), and more functional than ever before in my life.

The Deepest Day is a start to an extended conversation we all need to have about the real causes of difficulties after concussion/mild traumatic brain injury. Or any brain injury, for that matter. Stroke. Aneurism. Encephalitis. Whatever. It’s all related, it all directly impacts our experience as human beings, and our Sense-Of-Self. Clinically, our injuries may not be noticeably impactful. In terms of scientific measurement, they may not even register. But something is happening, and that something really matters. For us, for the ones in our lives, and everyone who is even peripherally impacted by our difficulties (including the countries we pay our taxes to).

The longer we ignore or downplay this, the longer we make it possible for people to suffer. The more we deny the connections, the more we guarantee that this problem will persist — for us all.

Dealing with TBI Burnout – Part III

Like this

All the adjusting and adapting… It can work me into a frenzy.

And it often puts me there long before I realize what’s going on.

Eventually, I figure it out.  And then, once I realize what is going on, I have to do something about it.

Stop. Just stop. Shut myself off from the world. Just take care of the basics.

Stop. Everything. Else.

It often takes me a day or two, to get my bearings. I tend to get down on myself because I’ve succumbed, once again, to the crazy-busy-ness, and I have to spend a little time looking for what put me into that frame of mind… tiredness. Weariness. Exhaustion.

And I have to take a break… which isn’t an un-welcome change, because sometimes there’s nothing I like more than just pitching it all over the fence and running in the other direction. There’s always the danger that I’ll overdo the “taking a break” thing, and I’ll lose all my momentum from before and end up more steps back than I’d like to be.

Finding a balance between DO-ing and BE-ing is not easy.

But it’s got to be done.

And so I take a break.

And rest.

And just enjoy myself.

Go do something else for a while.

And get right with myself all over again.

Dealing with TBI Burnout – Part II

What you get, vs. what you expect

See, when your brain suddenly works differently than it did before, it can be incredibly stressful. You have to stay on your toes, because so much can — and will — go wrong… or at least differently from what you intend and expect.

You start to say something, and it comes out wrong. Not only does it come out wrong, but it comes out in the “wrong” sort of way that puts people off — pisses them off — or makes them wonder WTF is wrong with you. Sometimes you don’t even understand that what you’ve said is wrong, until later — when it’s too late to take it back or correct people’s misunderstandings or explain yourself.

You start to do something — a simple little thing like picking up a spoon to stir your coffee — but your coordination is off and you drop the spoon, clattering loudly on the kitchen floor. The sudden loud sound is like a gunshot in your head, and not only have you messed up a very, very simple thing (how hard can it be to pick up a spoon and stir your coffee?), but you’ve also hurt your ears… And now you have to bend over to pick up the spoon, which is no easy feat, considering that you’re off balance and your coordination is off.

If you’re lucky, you’ll be able to bend down and stand up again without falling and hitting your head.

You get yourself ready for work and you go out into the day, but at every step along the way, things turn out differently than you planned and expected, and you end up frustrated and backpedaling and tied up in one do-over after another.

It’s exhausting, to be constantly adapting and adjusting. Always paying attention, always focusing, always double-checking to make sure you haven’t screwed something up or done something you didn’t intend. The worst is when you do things that others take the wrong way — they feel hurt by what you say or do, and then they lash out… because they think you’ve done it to them on purpose. Then you have to defend yourself, which sometimes means you have to get aggressive, because people are coming after you with both guns blazing — over a misunderstanding.

Over your brain doing something quite different from what you wanted it to do.

You do what you have to do, but it feels terrible. All the while you want to say,

“Wait – wait – I didn’t mean it. You’re misunderstanding me. I didn’t mean to say or do what I said and did. I know better. I really do. I intended better. I really did. But my brain isn’t exactly my best friend today and it’s messing with both you and me.”

And all the while, the rest of the world thinks that you’re either psychologically disrupted, or you’re doing things on purpose, or you’re malicious, or you’re an a$$hole, or you just don’t “get it”.

Nobody gets it. And sadly, with TBI, a lot of times that includes you.

Until it’s too late.

And you can’t take back what you said or did.

And you’re not even sure anymore about what you said and did.

And everybody’s pissed off at you.

Again.

So, you go on. You keep going. You get some sleep and try to eat right, you try to catch up with yourself. You just do whatever you can do.

You keep going, as best you can.

Onward.

Good-bye, precious time…

Time for a walk

We “lost” an hour today. It’s my least favorite experience in the world, almost. I need my hours,and I need my sleep, and when the clock “springs forward”and deprives me of a precious hour, that doesn’t make me happy.

Oh, well.You’d think after all this time, I’d be used to it. I’ve had 40-some opportunities to practice.

But it’s still no easier than it was last year.

Or is it? Actually, I think it is. I’ve accepted the fact of the experience. I’m not fighting it. I’m just kind of resigned to the whole thing — which seems to be where my head is at, these days — resignation and acceptance of basic unpleasant facts of life and the urge to just hole up somewhere and putter around my house, hammering the odd nail and painting the odd wall.

Back beforem y fall in2004,I was totally into fixing up my house. It came in move-in ready condition, so not a lot had to be done, but there were still somethings that needed to be tended to. The insulation in the attic had to be replaced. I did that. The walk-up to the attic needed a door built to keep the warm air downstairs and the cold air in the attic. I did that. The basement needed shelves and organization, and there were some things around the outside of the house that needed fixing. I did that, too. It was a big part of my life and who I believed myself to be.

A homeowner.

A weekend construction/remodel warrior.

I was really proud of that, and I dove into being a part of the community around me, joining a board in town and chatting with the neighbors while doing yard work.

After I fell, all that went away, and I disappeared into a haze of confusion and anxiety. I couldn’t interact with people, I couldn’t understand what they were saying to me, I couldn’t remember what we were talking about. And I couldn’t figure out what to fix on the house. So, things went slowly south… which brings me to where I am now, fixing things that I let go for the past 10 years or so.

Anyway, now I’m back, and I’m feeling much more like the person I want to be. I’m tired a lot, and I don’t have the same kind of spark around it, that I used to, but at least that part of me is back. And it’s good.

I just wish it hadn’t taken so long to come around.

But I guess that’s just how much time it takes, sometimes. And frankly, I’m lucky that I’ve come around at all. Make no mistake — I have worked my ass off, and I have made recovery from TBI a top priority in my life, pushing so much else out of the way. So, it’s not all luck. But in some cases — like the fact that I live within an hour’s drive (on a good day) of a major city with top neuropsychological care — I did get lucky.

What would I have done, had I NOT been near a city? What would I have done, had I NOT seen this neuropsych for all these years? I would have started this blog, anyway, and who’s to say I wouldn’t have come just as far? Having someone to talk to, who knows about TBI and its after-effects has certainly been helpful. At the same time, there’s the internet, and there’s Give Back with their Give Back – TBI Self-Therapy Guide which really got me going in the right direction. So, who can say?

All I know is, it feels like it’s been way too long for me… and I’m more eager to get back, than I’ve got energy for. It takes time — it takes a lot of time — to get on the good foot again, and it can be terribly frustrating.

Funny, things didn’t used to feel this difficult, way back when.

Because they weren’t. Now, it seems as though everything is harder. And I guess it is. Oh, well.

I really need to get out of the house. I worked indoors all day yesterday, and I’ve been cooped up at work at a desk, head-down, doing crap that’s piled up because people have left the company, or are leaving, or don’t feel like doing their job because their friends are going away. Sigh.

I need a break from the compulsive busy-ness (I may write a little rant later about bosses expecting their direct reports to be just as neurotic as they are… or I may not). I need to take a long walk.

Finish my coffee.

Put my coat on.

Hit the back roads, taking whatever time I can.

Onward.

Still more cleanup

Have brush, will travel

Today was painting day. I have had some leaks from my roof, and all the upstairs rooms have leak stains on them. Some worse than others. My spouse’s bedroom is the worst (we have had separate rooms for a number of years now, which lets us both sleep without being interrupted). They have been “camped out” on the living room couch for over a week, till things dry out enough for me to paint — which is this weekend.

I’m really hoping this works. The roof is going to need some patching soon, but we don’t have the money to do it just yet. The new (to us) car wiped out our savings, so it’s going to be a number of months before we’re in a position to do anything more.  At least I have a job. That’s something.

It’s a lot, actually.

I really need to do my taxes this weekend. I should be getting at least some refund. That will be something.

And none too soon. There are a number of things that need to be done with the house that are directly related to me being sidelined for nearly ten years after my TBI in 2004. We moved into the house in 2002, and I fell two years later, really screwing up my head — and whole life. I had things really well planned out, before my fall — I had shares of stock in the company where I worked, and they were maturing at a rate that would have let me pay off the house, when all was said and done. I was on track to collect my money in 2006, and then either wipe out the mortgage or pay down a big chunk of it, refinance at a much more attractive rate, and then invest the balance — or do whatever the hell I wanted to do. Travel. See the world. Take a break from the rat race.

Whatever I wanted to do.

But then I fell. And all that went away. It would have been nice if I’d had some sort of insurance to cover me. Actually, I did. But I was so impaired and screwed up, I didn’t understand what was going on with me enough to ask for help. And by the time I figured everything out, the damage was done.

And my good job was gone, my marriage was on the rocks, my shares were evaporated, much of my money was gone, and I was sh*t outa luck.

So it goes with TBI. Nobody understands it, least of all the person who sustained one. And everyone just stands around, scratching their heads, wondering why the hell things are so screwed up. It doesn’t make sense. None of it makes sense.

Well, anyway, I’m back on track now. Money’s an issue, but what else is new? At least I have my job and an income, and I still have my house and my marriage. That’s a lot. I’m working through all the issues I have had to stare down over the years — more or less on my own, thanks to nobody (and I mean nobody) understanding the degree to which I was struggling in silence. Even my neuropsych. Especially my neuropsych, who was “blinded by science” and what they thought were my real test scores.

Oh, well. So it goes. No one is immune, really, when a person can’t articulate effectively what’s really, truly going on with them. The only real fault I can find, is that they don’t listen very well. They think they have things all figured out. Huh.

In a way, though, it’s been fine, because I’m not sure I really wanted someone to be overly involved with me. I’ve been pretty much fine working through things on my own, with someone to check in with on a regular basis. I knew they were off track a bunch of times, but I didn’t say anything, partly because I didn’t want to get into it, I didn’t feel like my thoughts would be well organized enough to make any sense, and because I would just get really bent out of shape, when I tried to sort things out with them.

And they were so convinced that I just had the wrong philosophy about my state of mind/brain…

I didn’t feel like letting them down.

Anyway, for the ways that they’ve helped me, it’s been good. They just haven’t helped me quite the way they think they have.

Oh, well. Wouldn’t be the first time someone was completely wrong about me.

Anyway, it’s been a long day. The painting took 3x as long as I expected, and it wiped me out. Tomorrow I will have plenty of time by myself, because my spouse is meeting up with some friends for a while tomorrow afternoon. I’m really looking forward to the time alone. I have a lot to do — plus, another coat of paint to put on the ceiling — so it will be good to have the place to myself.

And have some room to think…. especially about the whole Sense-of-Self issue. It’s been on my mind, and I’ve got some more ideas brewing… especially now that I’m coming out of my functional fog and dealing with all these house issues. It’s been a long time since I felt like myself with regard to my domestic responsibilities. It’s coming back now, and that feels pretty good.

Onward.

100 Days and Counting

And the count begins

The reality of my situation is starting to sink in. There is a very good chance that I will be out of this job by mid-June. It occurred to me last night, when I was thinking about the money I just spent on a replacement van — what kind of money I’m going to be making over the next few months, how many hours I’ll be working, etc. It occurred to me that I need to not bank on this job being around, six… no, three… months from now.

Oh, we got a really good van, by the way, for about $2,000 less than book price, because it doesn’t have all the power “bells and whistles” that people come to expect, and it’s been sitting on the lot since September. I really feel like I got lucky, finding that van. It’s smaller than the one we had before, so it’s easier for my spouse to drive. Plus, it’s a 2005 with under 100,000 miles (I know – where did I find that?) and it only had one accident reported on the carfax. Pretty amazing. I managed to cobble together the money to pay for it in full up front, and we even have a couple thousand dollars left to live on.  It’s not much of a safety net — 1/6 of what we had 24 hours ago, and if anything catastrophic happens, we’re pretty much screwed — but I get paid on Thursdays, so there will be money coming in from this contract for at least a little while.

Yep, we got lucky.

And now my luck continues, actually, because I might be out of this job in another 3 months, after my major projects are delivered, and the company switches over to a new technical infrastructure. What makes me think so?

  1. Nobody has added any projects to my docket after my two big projects launch at the end of May/beginning of June,
  2. My boss has been spending an awful lot of time at corporate HQ and has stopped going out of their way to be super nice to me,
  3. My boss’s boss has been dismissive towards me and cancelled the 1-to-1 meeting they scheduled with me when they first came on the job, and
  4. Nobody on the “new technology infrastructure” team is making eye contact with me.

That’s what my keen observational powers are detecting, anyway.

To be honest, it’s a relief to think I’ll be out of there. I’ve really been disliking the work environment, with all the political changes going on, the rumors, the gossip, etc — and the company switching over to an “open” workspace configuration. God, that sucks. Talk about fresh hell. The wild thing is, for all the technical environments I’ve worked with, and all the teams I’ve been part of, this extended team is the one I like the least. They’re okay as people, but they’re not the most inspiring.They’re more interested in feathering their nests and keeping up appearances, than kickin’ it in the technical sense.

And I just don’t relate to that.

But in another few months, it’s probably going to fall into the category of “not my problem“, which will be wonderful.

I’m sure there will be other problems at my next job, but this team and the dynamics will not be one of them.

So, I’m getting proactive and gussying up my resume, updating it on job sites, and also updating my other online profiles. I’ve reached out to folks I used to work with, to see if they can keep an ear open for me. I also have talked to recruiters and put them on notice for June timeframe. Even if I don’t get shown the door, I’m probably going to shift out of there, once my big projects are done. I have no enduring loyalty to this company. I don’t actually like the products they make. I just like the paycheck and the commute. Other than that, I’m fine without them in my life.

It’s funny… I’ve had this nagging suspicion in the back of my head for some time, that the 2-3 year contract they set up was not going to be fulfilled on their end. They’re letting other contractors go, and with a “last in, first out” approach, that puts my head on the chopping block next, because I’m the most junior contractor left.

Now that it feels more definite, I feel like things are freeing up for me.

Ideally, they’ll just tell me what the deal is ahead of time, so I can get a running start. I’m already talking to recruiters… And I’m not waiting for them to come clean, because they generally don’t — and probably can’t. If I hold my breath, waiting for them to do things the right way, I’ll probably suffocate.

So, it’s onward and upward.

100 days to go (max) — then I’m free to go. :)

You do someone a favor…

I love to help others, but I never know what it’s going to turn into…

… and before you know it, it’s taken over your life. That seems to be where I end up a lot. Maybe it’s my impulse control issues cropping up again.Maybe it’s my tendency to get consumed by what I’m working on.Maybe it’s that the “simple” favors end up being quite complex because A) I have to work harder at them to get them done, and B) I find all sorts of things that need to be fixed along the way, and being the perfectionist I am — actually, no, I just want to get it done right — it’s got to get taken care of.

This doesn’t just happen with favors. It also happens with my own projects. I start out with a simple idea,and before you know it, I’ve complicated things beyond recognition, and I build out a whole life-altering drama around a simple project I started because “it seems like fun”. Again, I find additional things to focus on (all of which seem quite important) and everything balloons into something incredibly huge and complex.

In both cases, I tired myself out,and then I make sloppy mistakes and have to double back and try again, thus spending about twice the mount of time I originally intended to spend on it.

The irritating thing is,I don’t realize it until much farther down the line, when I have used up a lot of time and energy. As they say in Peanuts… Arrrrrrggggghhhhhh! It’s so frustrating. Especially when I get tired and I mess up other people’s stuff. Fatigue is such a Pain In The Ass. It turns me into an idiot — and I don’t realize it until much farther down the line.

In the end, though, I do these things, and they help other people. And it’s good practice for me. It’s no good, hiding away and not doing anything, because of fatigue. I just have to work through it, and learn from each time.

So, I’m trying to wrap up a project I’m working on for a friend. And I’m trying to wrap up TBI S.O.S., which actually does need to be “built out” a lot more than it is. I’ve got a lot of it written, which is great. But there’s a bunch of stuff that’s hidden inside that I need to sort out. and I have a feeling that when I start digging into it again (after a 2 month hiatus), it’s going to stir up a bunch of “stuff” with me.

Which is probably why I have taken a break from it for this long. Yes, I have some other projects I’m working on which have pulled me away for very good reason. But I’ve also been really struggling with some of the things I talk about, and it’s not always easy for me to function well, when I’m emotionally upset. And that’s even more emotionally upsetting for me, which turns the whole thing into a downward spiral that’s both mentally taxing and physically exhausting. When I get upset, I tend to get UPSET, complete with an internal storm (which may not be immediately visible from the outside) that throws me off for days.

When I’m “emotionally hungover” as some of my friends call it, I feel marginal for days. I have a hard time thinking and handling basic things, and I feel like I’m in a haze. It’s no good, when you have to really function at a very high level on a regular basis. Having a history of solid achievement in my professional life is a double-edged sword, which makes life … interesting, shall we say.

On the one hand, it puts me in an enviable position at work, where people look to me and rely on me for support and strength and reasonableness. In the midst of the madness, I project a demeanor of calm, cool, collected level-headedness, and people confide in me, at all levels. I’m discreet, so they know they can talk to me without it getting out to everyone.

On the other, it makes it all but impossible for me to be able to “slack off” (or even adjust my pace) in my life, to catch up with myself. Sometimes I just need to adjust — so I don’t wipe myself out and plunge into abject misery — but I really can’t back off my level of effort and my facade at work (and at home and in the world at large), because people are depending on me, and they need me to be something I can only be under ideal conditions.

The rest of the time, I’m faking it. Which is great for others, but really a pain in the ass for me… and ultimately for others, when I get tired and start to make stupid mistakes.

And then comes the scramble to adjust for those stupid mistakes and do damage control

Which, again, is tiring. And takes more of the energy from me that I need.

And all the world gets dim and grey and a lot more taxing than it should/could be.

And the inside of my head and world nudges a little closer to the edge of that abyss I spend so much time trying to avoid.

But nobody really knows or believes the extent of my efforts. So, it must all be easy for me, and I must be perfectly fine and have all this extra energy and surplus.

Right?

God, just thinking about how wrong that is, makes me tired. So I’m going to turn my attention — and the energy from all my frustrations — to writing some more. Doing something productive. Doing something meaningful for myself and for others. My hope is that I can get this book finished in the next couple of months, and then I can publish it and send it out to providers who think they know about how to address TBI, but aren’t factoring in the Sense-Of-Self issues. In all my reading and video watching and talking to my own neuropsychologist, I have not heard much reality-based talk about the effect that personal experiences with TBI has on prognosis of recovery and outcomes.

It’s not that people are idiots (well, some are, of course). It’s that they’re looking in the wrong place. And because folks with TBI are notoriously challenged at A) self-awareness, and B) articulation, what our experience is actually like, and how it affects the trajectory of our recovery, falls between the cracks and is lost — never to be found. Of course, you can’t look for something that you don’t know is there.

But I’m here to say that personal experience (or phenomenological influences, if you will) CAN and DOES have an enormous impact on recovery from TBI. And when you have providers who have not experienced it themselves, well then, my friends, we have a problem.

Time to do some writing. Onward.

Here’s some traveling music for you: