What We Dream Of Being

brokenbrilliant:

This is a great post from someone who’s been there — and lives it each day. Enjoy

Originally posted on Recoveryofthemind.com:

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Before I was Nine I wanted to be a Harlem Globe Trotter. Funny how I had it all figured out at age 7 or eight. I could almost, well I thought I could or imagined I would play as well as the Globe Trotters. No, I never understood how incredibly special they really were; you know coming from Harlem and being poor and rising to the top of their game through silly and masterful antics on the basketball court. The only thing I knew was that I could whistle their tune and shoot hoops really well. Gordy and I even had some of their moves down, or as I said, we believed it. We had a dirt basketball court in our back yard until mom made it a concrete patio before I was nine and then we were talking; there were the best games played on that court for years…

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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.

Getting better – patching up

Ah, the weekend.

It’s about time. I had a very long week, and I’m ready for some unstructured time. I’m also ready to just kick back and do some reading and cleaning around the house. The spring cleaning/reorganization bug has bitten me, and everywhere I look, I see an opportunity to change something for the better.

I’m really enjoying being off the clock, off-topic, off-schedule. My weeks are so schedule-driven that there’s not much time to just chill out and let things sink in. A perpetual state of mental indigestion pervades my weeks – there’s just not enough time to let it all sink in.

And

Just

Be.

I’m looking forward, today, to just doing what I like without trying to manage the long-term results. I get pretty sick and tired of that whole “results-oriented” mindset, where everything you do has to directly point to a specific goal and desired outcome. Yeah, whatever. It’s all a chimera, anyway, where everybody’s fooling themselves into thinking they’re going to control their environment and “make it happen”. And getting everyone around them “on board” with it, as well.

If you don’t go along with the group hypnosis, you’re not a team player.

Guess that makes me not a team player.

The ironic (and pretty funny) thing is, by not signing up with everyone else’s idea of how things should go, I actually get closer to the ultimate desired result. Pretty funny, actually. You get there by giving up trying to get there.

Ha.

Anyway, it’s all fun and games for me, for the next 48 hours. 51 weeks left in my current contract. Thinking about the future. Playing with ideas. Having some fun with it. And really enjoying my time… whatever it is I’m doing.

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.

Finishing what I started… in 2009

It’s been over 5 years, since I started the book I’m finishing right now. It’s about sensory issues,and how they affect my life each day.

It’s my hope that this book will shed a little light on what it’s like to be acutely sensitive to light, sound, touch, and how it feels to have your balance severely impacted.

It’s a full-spectrum experience, and it’s not much fun.

Sensory issues have been a real problem for me, ever since I was a kid. And only in the past six years or so, have I actually been able to get my head around them — and do something about them. Food allergies were a big culprit. As well as stress.

Of course, when you’re not aware of what’s stressing you, it makes things even more stressful — a self-fulfilling prophecy, if ever there was one.

Anyway, I’m going to finish the book, at last. It’s not long. It’s about just one day. I need finish it, once and for all. I don’t want to complain. Just explain.

Because I know I’m not alone in this.

Knowing when to say “No, I’m not doing that”

Does it all NEED to be done? Probably not

So, you’re way into your life. You’ve got all these ideas you want to explore… and all these activities you want to try out. Indoor activities, outdoor activities, social activities. All of them sound fun and cool, and just thinking about them gives you a charge.

The only thing is, your brain-injured noggin is losing sight of how tired you are. And it also doesn’t realize that when you get tired, you get even more distractable, and you end up coming up with even more cool stuff you want to do and try.

I do this constantly. I get excited about an idea, and I dive into it head-first.

Then I over-do it, and I get tired.

Then I get even more distractable and scattered, and I find all sorts of other things to explore and do and study, and I end up in that classic spin-cycle where I’m dashing from one idea to the next, one project to the next, one new passion to the next, and-and-and-and… well, you get the picture.

And before I know it, I’ve worn myself out, gotten irritable and angry over every little thing, I’ve become useless to my spouse, I’ve holed up in my study, and I’ve come to really despise myself, the world, and everyone around me.

All because I found something really great to get into, and I overdid it.

When you’re dealing with an injured brain — even a mild traumatic brain injury — you can end up spinning in circles over every little thing — including the things you love.

That’s where I’m at right now — spinning, because I haven’t figured out how to say “no” to new things I’ve discovered that appeal to me. I’ve got so much energy going on, right now, it’s crazy. But it’s also making me crazy, because it’s blinding me to the things I’ve already started that I need to finish, which is just adding to my sense of overwhelm and frustration.

So, this is my focus for the month of March — to quit taking on all sorts of new and different activities, and just keep on with the things I started months ago. I’ve got several books about TBI in the works — three of them at are mostly done, based on posts I wrote on this blog over the years that have gotten a lot of interest and need to be expanded. I’ve got some really good ideas that have been on the back burner, just because my distractable brain keeps saying “oooh – shiny!” and running in all sorts of different directions.

That’s enough of that, thank you very much.

It’s time to say “Nope, not today,” and get on with the work I started months, even years, ago.

Onward!

Trying the standup desk “thing”

This is the idea, but I use books.

Okay, I’m trying using a standup desk – again – in hopes it will give me some relief.

My hips and knees have been giving me a lot of trouble lately, no doubt because of the long, hard winter, and me not being active enough. I could have done some exercise each morning, like I used to, but for some reason, I chose to sit at my desk and work.

I guess I was just so focused on work and making my ideas into reality that I lost sight of the whole exercise thing.

So, now I’m paying for it.

I’ve actually been meaning to switch to a standup desk for a while, and I did try putting one together, a few months ago, but it didn’t feel right. I think the height was not right. Now I have a higher one, where I don’t have to reach down so far,and it feels much better. It’s just a box with some big stabilizing books in it – just for my laptop, for now. But that’s really when the bulk of my sitting takes place.

I really do sit a lot, each day. All day, every day, pretty much. Except when I’m walking between places where I sit.

So, that’s changing. This is better. I’ll have to figure out how to raise a larger area, so I can also take notes, but I think I’ve already figured that out. I have an extra bookshelf that’s about the right width for my work, and I have a big stack of books I can use to raise it to the proper height. That will do it.

Okay, got it all set up. One nice wooden finished  bookshelf (that was just standing around collecting dust) plus two stacks of books that were taking up valuable space on my floor, and voila – there ’tis. I didn’t have to spend a couple hundred bucks for some fancy gadget that was made in China. I had everything I need right here — just had to move it around a little bit.

Plus, I still have my laptop-only stand, which I can use if I need to just use a small area.

Either way, it’s good.

And I have to say, it does feel better. I spend an awful lot of time at a desk — especially this one at home. That’s not doing me any good. My hips and knees are complaining, and frankly all that sitting makes me a bit sleepy. Supposedly, standup desks make you more focused and also keep your metabolism up. That can’t be bad, I’m thinking. Especially for me, where fatigue and lack of focus become such issues.

I may just try this at work, too. We’ll see how that works out.

Anyway, it’s a new day. It’s not raining, so I can go out for a walk. This is a needed change, and 2015 is already feeling like it’s opening up.

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.