“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.

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:

I’m up early today

Cutting through the cloud

I’ve been getting to bed around 10 p.m., which is good. And I’ve been waking up early, which is also good. I just wake up. Then I lie in bed for a while, stretching and just feeling comfortable. Then I have to get up. I can’t just lie there. I have things I want to do, before I go to work. So, I get up, make myself breakfast, and then sit down to work on things that are mine, not someone else’s idea.

I’ve been finding some really cool pictures, lately, which visually depict how I’m feeling. I found pictures of underwater sculptures by Jason DeCaires Taylor at http://www.underwatersculpture.com/sculptures/, and they seem to depict how I feel, pretty much every day.

I’ve been trying to summarize for my neuropsych the different aspects of my personal situation that they haven’t been acknowledging or addressing. They have been treating much of what I deal with like it’s an emotional reaction to stuff, rather than seeing that I’m really struggling to express what I’m experiencing.

I’ve ignored their cluelessness for years, because it’s worth it to me to have someone to talk to, and just being able to talk to someone and practice organizing my thoughts out loud is worth the world to me. But it’s so frustrating for me to try to articulate what is happening with me in words. In writing, I can do it. But when I’m sitting in front of someone, being watched, I tend to lose it. I get so far, then I have to stop. I can’t go into details. I’ve had too many bad experiences, trying to disclose my issues to others, only to have them either freak out on me, contradict me, or make fun of me, or tell me I’m lying.

I don’t “present” like most brain-damaged folks do, so the depth and range of my issues do not really come through, loud and clear.

So, this is just one more person in my life who doesn’t know and doesn’t help in some ways.

But they have helped me, just being there… and also being very focused on human performance and improvement. Most of the people I know aren’t interested in really pushing themselves to be better, to get better, to live better. They’re happy with just relieving their pain — pain they cause to themselves.

It’s an endless cycle with most people I know:

  1. Get sucked into bad, destructive habits of thought and action:
    • Don’t eat right, don’t exercise
    • Get caught up in negativity and pointless drama
    • Get all worked up over misperceptions and mistaken impressions
    • Fall into the customary abyss of negativity, criticism, and frustration
  2. Suffer each and every day, each and every waking moment… usually without realizing it.
  3. Long for release and relief. Usually without realizing it.
  4. Do things that will relieve the pain and suffering they have caused themselves, thinking that it represents progress.
  5. Just be happy that the pain is temporarily gone.
  6. Get up the next day and go back to doing the things that cause them pain and suffering.
  7. Wash, rinse, repeat.

My neuropsych is actually not into that at all, and we are on the same page, in terms of breaking free of all the bad habits of thought and action that stoke human misery.

They’re just sorta kinda wrong about the source of much of my pain and suffering. I know there are things I do which make my life more difficult. Not exercising as much as I should, eating too much sugar on some days, and sinking into frustration and despair are some of the things that drag me down. But not all of these things are caused by poor habits of thought and action.

Some Most of them are because of my TBI issues, which I really struggle with, even though they don’t show. Most people don’t know how often I am in pain, am confused, am turned around and don’t really know where I am, or I literally feel like I’m dying. I know how to keep going without making a fuss about things. I keep going, because I know that a lot of this stuff is temporary — or if I can just get my mind off it, I don’t have to be held back. So, I focus on other things. And life goes on.

I don’t know why I am so concerned about my neuropsych not knowing what all is going on with me. Maybe I just reached a point of critical mass, where I realized just how different their perception of me is from my personal experience. Maybe it’s because of the whole neuro involvement, where the two of them will (probably) be talking to each other, comparing notes, and there’s a chance that their two perceptions of me will be very different, so they’ll both think I’m lying, and I’ll be back at square one. Maybe I’m just tired of hearing the mini-lectures about how our minds give rise to everything.

There’s a whole world view called “mind-only”, and I suspect my neuropsych adheres to it. I have my own take on that. But it’s too complicated to go into, right here.

Bottom line is, I’m up early, I have a few hours to do what I like, till I head out to work. I’ll get some more exercise, I’ll work on my projects, and I’ll prepare for the day. I may even get to work early, so I can make up for some of the billable hours I missed yesterday.

We’ll see.

Onward.

 

Without the protective shell

They usually help

Vitamins that have lost their protective shell are pretty nasty-tasting. I got a little reminder of that, just a minute ago, when I took a couple of vitamins that had been sitting in some melon juice. My breakfast is usually toast and a banana, a couple cups of coffee, and my vitamins.

But today I had no ripe bananas, so I put some cut-up fruit on my plate. Watermelon, cantaloupe, honeydew melon, pineapple. And some of my vitamins got in the melon juice, removing their protective coating and reminding me – yet again – why they have a protective coating in the first place.

Nasty.

Anyway, I’ve been thinking a lot about how I walk through the world, and all the adaptive behaviors I’ve developed in order to function the way people expect me to. It’s like I’ve been living undercover for most of my life. I started having real problems after TBI when I was 7-8 years old, and it didn’t stop there.  And I’ve been through the wringer with so many people over so many things — saying and doing the wrong thing, looking dorky, not being able to move very well at times, and struggling with basic stuff after getting injured, again and again… and then getting roughed up (figuratively speaking) by people who had no information or patience for me and my inconsistencies.

I was supposed to be so smart — no, actually, I was smart. Yet, I couldn’t manage to get my act together. Always running into problems. Starting things and failing to complete. Completing things and doing them wrong. Running numbers and ending up with a mess of calculations that were all incorrect.

Part of it was because I was a little too smart for my own good, and the other part was, I had a lot of invisible deficits and challenges that nobody really believed existed.

So, I learned to live the way others expected me to, and I took on the roles that got me rewarded. Club member. Town board member. Team leader. Breadwinner. Business owner. Professional. All that. I learned how to present myself in ways that satisfied the social requirements. I practiced and practiced and practiced, making sure I had it “down” and I could pass for the sort of person who would succeed in the world.

And it was good enough. For everyone else.

Meanwhile, I’d end up completely wrung out and beside myself, by the end of each day, unable to think past the next five minutes and melting down over every little thing. I’d go so far, then come up short — running out of steam, running out of ideas, not understanding the nature of my problems, and certainly not knowing how to address them.

Living that way for over 40 years has its effects. It builds habits that are hard to break. And when you have to break them — such as when you’re trying to get help? Then what?

An excellent question.

I’m trying to find that answer right now. To be honest, I’m not sure I’m going to find it. There’s a chance, it’s too late for that. I suspect my protective shell is too functional and too intact, to let me really show what’s going on with me, so I can get help. I’ve tried reaching out, but it seems that my success at compensating is working against me, and I’m left with the overwhelming sense that I — like so many others dealing with mild TBI — am pretty much on my own, and no one without TBI (even trained professionals) can ever understand just what it’s like.

I don’t know why this is tweaking me, right now. It’s not like this is news to me. I’ve been well aware of the isolation of TBI for years, now.  But all of a sudden, it’s become important to me. Significant. Probably more “important” and “significant” than need be — no doubt thanks to my sleep-deprived head (I blame the recent nightmares about having to choose between letting myself be killed, or watching others I love be injured or killed).

I suspect it has to do with embarking on this quest to find a neurologist who can work with me on my headaches, tremors, twitching, and other symptoms that have become more noticeable and bothersome over the past year. The idea of trying to explain myself to them just puts me over the edge, sometimes. I’ve been down the healthcare road — to no avail — so often, and only recently have I found a doctor I can talk to and work with (who is actually becoming less and less engaged, as they absolutely hate the practice where they work).

Now it feels like I’m starting all over again, and I have to let down the shields to tell this new neuro what the heck is up with me.

Panic.

And like the vitamins that left a really bad taste in my mouth after I took them earlier, I’m left with a really bad taste in my mouth about trying to communicate with my healthcare providers. It feels like I have to drop my defenses and expose all the most difficult aspects of my experience, in hopes that they’ll be helped, somehow. I’m not sure if they will be. I’m not sure if they can be. I’m not sure if I can adequately communicate them. I’m not sure if anyone will believe me.

And in the meantime, I’m left defenseless and vulnerable, and that’s a terrible feeling.

Dealing with the mainstream medical establishment makes me nuts. I’ve never done it particularly well. I’m not sure anyone has. It’s like we have to just throw ourselves on the mercy of the system and hope against hope for the best. It can be so dehumanizing. There’s a reason so many people turn to alternative healthcare, including “folk” healers in place of medical doctors. Healers and alternative folks (in my experience) put a focus on listening and treating the whole person — body, mind, and spirit — not just diagnosing a medical condition and hammering on it with prescriptions. So much of what ails us involves ALL of us, not just a handful of symptoms, but modern medicine seems to not quite get that — yet.

Anyway, I’m tired today, and I have a couple of busy days ahead of me. I have some hopes for this weekend. We shall see. With any luck, I’ll be able to have a little of the peace and satisfaction I found last weekend. I’m sure a nap (or two) will help. That, and just getting my mind off the whole neuro thing.

For the time being, anyway.

The day is waiting.

Onward.

When nobody believes what you have to say

So, this is interesting. The neuropsych that I’ve been seeing for over six years has finally — finally — gotten it through their head that I have more issues than they realized, or wanted to acknowledge. For years, we’ve been working on my attitude, getting my outlook out of the muck and mire of my crappy moods, and focusing on getting me to realize that I’m not that bad of a person, after all.

That’s all very well and good, and it’s important work for me to do. But I’m not sure they ever realized the extent to which TBIs have screwed up my general functioning. Things like my piss-poor memory, my impulse control issues, and behavior that just is NOT like me or how I want to be… Yeah, it’s been extremely disorienting, and discouraging.

But I haven’t been able to articulate that out loud to another person, especially my neuropsych.

I’ve been trying for years to articulate it, but every time I try, I get stuck and I can’t get the words together properly. Part of the problem is that the conversations we have move too damn’ fast for me to keep up with. When I’m writing things down and able to process them, or I’m coming up with ideas myself, it’s one thing. But when someone is sitting across a desk from me, engaging me in a conversation, and they say something I’m not really sure about — or that I didn’t even hear properly — responding appropriately is a huge challenge.

And a lot of times it doesn’t happen.

So, I just respond. I settle for whatever comes to mind, and I put that out there. And it passes for a response.

Or I just nod and smile, “Yeah, okay,” and it sounds like I’m agreeing. But I haven’t had the chance to really think it through and come up with a genuine response based on what I think and feel.

And in the process, I guess people get the idea that I:

A) agree with them and/or

B) “get” what they’re saying

When nothing of the kind is happening.

But stopping the conversation in mid-stream is so demoralizing, and I feel so stupid and slow, like everything is sludge moving through my brain, I just can’t bring myself to admit that I’m lost. Or that I have to give what they’re talking about some more thought before I respond.

And then there’s the whole background business, where my head is working in Dolby 5.1 and Technicolor and 3D, but my mouth can only come up with some lame little idea blurted out, because I can’t think of anything else to say, and it’s just too demoralizing to ask for more time.

Hell, even if I get more time, there’s no guarantee I’m going to be able to say what I’m thinking. Because I think in pictures and in surround sound, but spoken words only go so far.

So, anyway, it’s actually less of a problem for me, than it is for my neuropsych. I hate to break it to them, but a ton of my recovery has happened here on this blog and in my life, and a lot of it has happened not because of their help, but in spite of it. They’ve said some seriously screwed-up things to me, which I paid no attention to. Things like, “Don’t keep lists of everything. You’re much higher functioning than that.” Ha! Right. Or, “Make sure you get at least 8 hours of sleep a night, minimum.” As though that will ever happen predictably.

Please.

In many ways, they have helped me a great deal — especially because they have been a regular presence in my life on a weekly basis for quite some time. But they’re not nearly as effective as they seem to think they are, and watching them get so uncomfortable over not being The One (And Only One) who got my head screwed on straight, is interesting.

Anyway, I feel kind of badly for them. They really try. But there’s a sh*t-ton of stuff they don’t know about me, because A) they haven’t looked for it, and B) even when I told them about it, they didn’t hear or believe me.

Oh, well. So it goes with TBI. When you’re brain-injured, people are either all Woo-Hoo-We-Believe-In-You, bending over backwards to show how accepting and supportive they are, or they freak out and flatly deny that you’ve got issues and treat you like you’re making it all up to get attention.

Hidden away from plain sight, our issues continue on. Some days are better than others. The best days are when the opinions of others matter less than not-at-all.