“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.

Not for the faint of heart

The path must be there somewhere

The path must be there somewhere

I’ve been thinking a lot about my recovery, lately. What I lost to TBI, what I’ve gotten back, and where I go from here.

Scratch that. Yes, I’ve been thinking a lot about it, but thinking is not the point.

Living is.

Looking back at where I was, just a few years ago, it amazes me that I was as functional as I was. I mean, even just five years ago, I was grappling with all kinds of crap like intense mood swings that would completely wreck my day, and a ton of money troubles — creditors calling me constantly, threatening to take me to court — and some of them succeeding.

I landed in court at least twice (maybe three times?) that I can remember, and I totally screwed up one of the appearances, where I didn’t realize I needed to go into the actual courtroom. Even though I was sitting right outside, they logged me as a did-not-appear, which didn’t do much for my case.

Oh well. That’s over now. Don’t plan to go back there again.

Anyway, everything was so turned around, and it was literally all I could do, to keep up. I was in constant reaction-mode, constantly pushing, constantly fighting, constantly going against a grain of one kind or another. I was off my moorings, cut loose from the life I’d once known, and I was dealing with my spouse’s illness, as well.

All this, while having no real sense of who I was, or what I was about. I was on auto-pilot, just hacking my way through the weeds. And there didn’t seem to be a clear path.

To anywhere.

Now things are different. Very, very different. And I’m coming out of the jungle with a clearer view of where to go. It’s like I can actually see a path in front of me. It’s not ideal, but it’s still a path.

That's more like it

That’s more like it

And I’m still walking. Running, now and then. I’m also making progress, each and every day. I just need to make sure I get enough rest and good food, to keep going. That means real food, not a handful of candy and junk food at 3:00 in the afternoon. That sh*t will do me in.

Anyway, life goes on. I’m putting some distance between my past and present, and that’s giving me some needed perspective. I was so caught up in just getting through, so turned around, so uncertain about how to live my life.

All the things that had seemed so familiar to me — the old ways of thinking and doing and being seemed to be smashed to smithereens. From the simplest of activities like brushing my teeth and coming my hair in the morning, to making breakfast, to what I did for work each day… all of it morphed into something different and unrecognizable.

And it was really hell.

I think the hardest thing was losing my innate skill with little simple things, like being able to hold things without having to think about it. Dropping stuff all the time did a number on my self-confidence, and I couldn’t figure out how to get it all back. I just felt so stupid, so dumb, so inept. The simplest things were challenges for me, and I didn’t understand why they were hard for me.

That just stressed me out, and stress biochemistry does a number on your ability to learn.

More stress meant it took longer for me to re-learn, to re-train my body and brain, and it just prolonged everything. I didn’t understand the nature of my problems. All I could see was that I had those problems — or rather, they had me — and there didn’t seem to be any escaping it.

Now I know better, of course, but it’s been a long, hard road. And frankly, it’s sucked.

It was lonely. It still is lonely. Because nobody seems to understand what it’s like to actually lose your Sense-Of-Self. What it does to you. What it does to the people around you. How much it takes out of you, day in and day out, to have to reconstruct your life. I’ve rebuilt a huge amount of aspects of my life as I once knew it, but to be honest, I still know that I’m not the same person I used to be. And while I’m “close enough”, still…

I don’t feel the same way as I used to — about my life, about living my life, about, well, most things. And that loss of Self, that loss of the Sense of My Self, has been the hardest thing to overcome. I know how to rebuild. I know what it takes. But it’s still not easy, and most days, I’d rather not have to.

There’s a reason people don’t readily jump into finding out what it’s like to recover from a TBI. Or Concussion. Or stroke. Or brain aneurism. Or encephalitis. It scares the bejesus out of them to think that the brain can change as dramatically as that, and they just don’t want to think about it.

Some of us have to do this work. But it’s not for the faint of heart.

Finding my zone again

Gotta get there

An odd thing has happened with me, since I had my contract renewed at work. After being relieved and elated that I wasn’t going to have to go searching high and low for another job, the surge in energy left me feeling pretty depleted… and also depressed.

That happens with me — I run a lot of energy — I “run hot” — and then when I run out of steam, my energy ebbs, and my mind gets to thinking that I feel like crap because my life is crap, and everything is wrong and nothing will every be right again. It’s sorta kinda like bipolar stuff on the surface, but fundamentally, it’s about me being tired, my brain getting irritable, and my head jumping to wrong conclusions about how crappy life is in general.

It’s not true. It’s just me being tired. And getting a lot of extra rest solves that issue — which is what I did this past weekend. I rested. And my depression went away.

Anyway, last week I got upset that I’m no longer a technical whiz, that I’m not doing the type of programming I used to do, and that I kept (and keep) getting calls and emails from recruiters about technical jobs that I want to take, but can no longer do.

The money is better in technical positions, that’s for sure. And it’s a simpler way of life that doesn’t involve navigating the choppy waters of human interaction. But I just can’t do it, anymore. My brain doesn’t work like that anymore. I’m out of practice. And even the simplest examples which are given for “dummies” don’t make any sense to me.

Insert giant sad-face here.

The thing that gets me even more than the money and type of work, is that ever since my fall in 2004, I have not had that kind of immersive focus in my work that I used to have. I used to have a “zone” I would go to, when I was deep in coding, when I was deep in the experience and working smoothly and confidently. But that hasn’t been anywhere in sight (except for some occasional times), for over 10 years.

And that’s the loss I feel the most keenly. It’s heart-breaking. I used to love that way of working and feeling, and now it’s gone. Like a pinkie finger that got cut off. I can live and work without it, but I like all my fingers, and it just doesn’t feel the same.

So, rather than wallowing in that unhappiness and marinating in my discontent with something that isn’t likely to change in exactly the way I want it, I did some research. And I came across a book called “Flow” by a psychologist whose name I cannot pronounce. I watched some videos on YouTube and found the book at a local library, and I’ve been digging into it, a little bit at a time.

See, the thing that I miss is not so much the technical work, as it is the experience I used to have while doing the technical work. And after reading “Flow” a little bit, I now realize that what I miss is being in the “zone” — being able to concentrate completely on my work with total confidence and skill.

That’s what made that work magical, not just all the bits and bytes and algorithms.

So, that’s what I’m working on, these days — getting back to a zone state. Finding where I am really confident and skilled — even in the little things like washing dishes or fixing things around the house — and doing those things “in the zone”. Not zoning out, where I’m not present and I’m ignoring everything and everyone around me, but really being caught up in the amazingness of what I’m doing.

Finding that amazing quality to the world I live in, and really relishing the details — no matter how small.

Even the littlest thing, like brushing my teeth or sweeping the floor, can put me in the zone, if I have the right frame of mind. Or bigger things like doing my taxes or completing a project at work… that can give me a sense of Flow, as well.

It’s really the quality of experience I’m interested in. And out of that can then come a sense of mastery, which in turn feeds the desire for mastery in other areas of my life.

But I have to start somewhere, and then build from there.

So, that’s what I’m doing. I know what I’m missing, and I have a good idea how to restore that “zone” sense, that feeling of flow. It’s probably going to be different, of course, because my new work is different from my old. But maybe it will be quite similar.

We shall see.

Network chiropractic makes a huge positive difference

Got some relief

Just a shout out to the network spinal analysis chiropractors — this stuff works. I’ve been seeing a new network chiro for about a month, now, and the change in my system is noticeable — and incredible.

I’ve done this before — a number of years back, I was going 2 – 3 times a week,and it really helped me get my system out of chronic fight-flight mode. Then my company movedthe office,and it wasn’t possible for me to make that drive all the time, so I stopped. To be honest, I was also irritated by the spouse of the networker — so that put me off, too. For some reason, all the husband-wife networking teams I’ve encountered (all two of them) have had one good spouse and one pain in the ass. Doesn’t matter which gender — one is level-headed and personable, and the other is needy, pushy, and friggin’ annoying.

I’ve actually left two different networking practices because of “bad egg” spouse issues. But this new one isn’t in business with their spouse, so that makes it eaiser.

So, it’s been going well. Really well. My level of fight-flight stress has gone way down, and my body is remembering what it learned before. I really did make great progress with my prior chiro, I just couldn’t do the drive.

One of the net results of getting out of sympathetic bias, is that I’m less driven to do so much all the time. I tend to put a lot on my plate to keep myself engaged and on edge. It sharpens my senses and makes me feel alive. But it also does a number on my autonomic nervous system —  my nervous system in general.

Now that I’m more out of fight-flight mode, I don’t have that same urgency, that same drive. And it feels pretty good. I can relax and actually enjoy myself. And take naps when I need them.

I’ve also been reprioritizing my activities and projects. Spending more time thinking about things, instead of blindly doing. Just sitting down to think things through. Or go out for a long walk to make sense of things.

And being less on-edge with people and situations, so I can pay attention and be part of the conversation and actually get closer to saying what I mean.

That’s always helpful.

Anyway, I have another unstructured day to do as I please. I took a long, long walk, first thing this morning, and now I’m back for my second breakfast and some reading and sketching out some of the ideas I had while I was walking… And before I left… And after I got back.

The pressure’s off. And I may just lie down for a nap before too terribly long. It’s all wide open, right now, and that’s a pretty incredible feeling.

Onward.

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.

Picking up and moving right along

Surprise! My contract at my current job has been extended for another year.

The first surprise was that it was announced yesterday.

I know my boss has been working up at corporate a lot,lately,and I know there are organizational changes going on, and I guess I did know things were “being discussed”, but I wasn’t 100% sure I was on the chopping block.

The second surprise was that my contract was renewed for a year only.

Originally, it was a 2-3 year deal, where people were talking a lot about a 3-year timeframe. The fact that I’ve been “extended” less than a year into that contract really makes me wonder about how these people do business.

The third surprise was that I was actually really relieved when I got the news. I have been wanting to leave. I have been taking steps to leave. I have been talking to recruiters about making a move, and I have continuously gotten emails and calls from folks who have pretty decent opportunities. I could go, if I wanted to. I’m pretty sure about that. But now I don’t have to. I can bank on this job just down the road from my house for the next year, while I give myself time to transition to what else I want to be doing.

Which doesn’t involve as much dependency on a day-job to get me by.

The pressure is off, for now, which is nice. No more adjusting, no more re-learning. Just buckling down to do my own work in the meantime, and get myself more independent than ever.

Moving right along…

Onward.

 

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.

Picking and choosing

How you like them apples?

I have a lot of paperwork to fill out, these days.

The car accident and totalling the vehicle means there are police reports and vehicle inventories to assemble and respond to.

I don’t have time to slog through everything, so I’m picking and choosing what I’m going to concentrate on, and stick with that.

I’ve also canceled some of my appointments this week, and I will likely cut down on the number of appointments I have in the future.

I need the free time more than I need the caretaking.

And frankly, I’m getting tired of all the talking and sorting things through.

I’ll keep my network chiropractic appointments, because that’s really helping me a lot, but the rest of them… driving all over creation to get to these places which may or may not be helpful? I dunno.

Plus, it’s really starting to piss me off, that my neuropsych is — still — so oblivious to what’s really going on with me. It’s like they made up their mind about me, way back when, and nothing has changed. I’m really getting tired of having to explain myself all the time.

How would it be, if I could just get home at a decent hour, instead of late-late, several times a week?

It’s been a long winter. I need a break.

Onward…