They say it’s the brain, but it’s also the body

It's ALL connected

It’s ALL connected

TBI can seriously mess you up in the head. That’s a given.

But it can also seriously mess with your physiology.

In fact, out of all the problems I’ve had over the years, the physical issues I’ve had have far outweighed the cognitive ones – if anything, they contributed to my cognitive and behavioral issues.

  • Fatigue – bone-crushing, spirit-sapping exhaustion;
  • Problems keeping my balance, which messed with my moods.
  • Heart rate increase – or decrease, as well as blood pressure changes.
  • Light and noise sensitivity.
  • Headaches
  • Body aches
  • Sensitivity to touch, which really messed with my head, as well. Imagine never being able to have human contact… it’s not much fun.
  • Constant adrenaline rush that wired me out, something fierce.

When your brain gets injured, it can affect your whole body. Because as we know, the brain is mission control for the rest of the works below the neck.


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.

I feel like crap. I must be getting better


Holy smokes, I am dizzy. I’m having difficulty keeping vertical, and I constantly feel like I’m about to fall over. It’s gotten so bad, that I had to cancel some appointments this week, because I really can’t drive long distances in this shape.

It’s either a cold / infection affecting my my inner ear, or it’s neck strain. I’m inclined to think it’s the latter, because it really sets in when I am looking up  for extended periods of time. I can focus intently on something, and that will make it better, but when I stop focusing on something intently, it comes back, and it’s pretty bad.

I’ve had problems with dizziness for many years. It’s been a problem for a long, long time, and I now believe it’s related to the head and neck injuries I’ve had over the years. I’ve been in a number of car accidents that gave me whiplash and screwed up my head and neck, and I’ve also fallen on my back and had my head snap back. So, I’ve had plenty of neck trauma over the years.

And dizziness, too. I’ve gotten used to it, in away.

The encouraging thing about this is that I can actually tell that I’m dizzy. In the past, I was so stressed out and so taxed, just keeping up with the simple day-to-day activities, that this sort of thing didn’t register with me. I just kept going. I just kept pressing on. I didn’t let it stop me… and it didn’t.The thing is, I didn’t really deal with it, either. And I certainly did not cancel appointments because I was off balance. That would have been stupid, according to the old me.

The fact that I’m making these sorts of decisions now tells me that I’m getting better, I’m better able to see what’s going on with me, and I’m better able to take care of myself.

It’s interesting – when I cancelled one of my appointments yesterday, the person I was going to see told m=e it sounded like I was acutely ill and needed to see my doctor.  I guess it did sound kind of dire, the way I described it. Then again, it didn’t. It was just about me being so dizzy that an additional 2-1/2 ours of driving (round trip) was not going t help my situation.

I  told them, No, I’m just more dizzy and crappy-feeling than usual, and I expect it to go away with time.Sure, I’ll contact my doctor, but not over something as common as this.

The thing is, I can track the increase in dizziness to when I started doing more overhead work around the house. I’ve had to do a bunch of repairs to items over my head, including changing light bulbs and cleaning windows and the eves of my house. I was also helping my neighbor do some overhead cleaning, too, and since then my neck has been very tight and sore and I’ve been dizzy. Even now, when I move my head from side to side, I get dizzy.

So, acutely ill, no.But extremely dizzy and not feeling that safe driving around, yes.

I’ll just do what I usually do, which is stretch more,work on my neck — and I also have a massage on Monday, which should help a lot. I’m looking forward to that. I should probably do it more often. There’s a place down the road from my home that has a jacuzzi and sauna and they also do a variety of massage types.Hopping in the jacuzzi to soak in hot water, then getting a massage sounds like about the best thing I could possibly do for myself, quite frankly.  That, and sleep.

Too bad I have to go to work later today.

Well, anyway, I actually do need to go back to my chiropractor. They really helped me before, and I need to go back, so I can address the lower back pain and the neck stuff. Now that I am working closer to home, it’s going to be possible for me to do this again. I had to stop going, because my commute was so long, and I was so tired, and going to the chiro added an extra hour to my daily commute, which was brutal.

Now that’s changed. I need to take action. So, I’ll give them a call later today.

Either before or after my manager sits down with my group and tells us about people getting laid off.

New day, fresh start, woo hoo

A new day awaits

January seems to have flown by. And today actually feels like a fresh start for me. There’s something about today… I’m going to give the new neurologist another call to see if I can get in to see them. They transferred to a new hospital — which is only 30 minutes from my home (score!!) — and their credentials and records all have to be transferred to the new practice. I called two weeks ago, and the deal wasn’t done yet. They told me to call back in two weeks, so I’m doing it.

I’m feeling pretty positive about this. The main thing I want to find out, is if there is something serious going on with me. All these symptoms could be nothing. The tremors, twitching, headaches, dizziness, vertigo, nausea, etc. could be “just one of those things”. Or they could be something more serious. I just want to rule out the “more serious”, so I don’t have a degenerative condition eating away at me behind the scenes.

I’ve dealt with some vitamin deficiencies, which have really helped my head. And I’ve been dealing with my physical fitness to stave off the creeping effects of aging. I just want to make sure I’m not in a situation where things are getting worse without me knowing it. My PCP, as much as I like them, has pretty much checked out of their practice. They’re just putting in time until they retire, it seems like. They don’t like the practice they’re in, they don’t like how they’re told they’re supposed to practice by the insurance companies, and they don’t follow up adequately with me. I can talk to them about most things, and I feel pretty good about our rapport. But medically, I have reservations. They’re just not as engaged as I’d like them to be.

Anyway, yesterday was a very telling day for me. Monday’s are always informative, in one way or another. The changes at work have not worked in everyone’s favor, and there are a lot of disempowered, disenfranchised people walking around the office. The people who are most disenfranchised are the long-timers, the ones who seem to think that they’re “in”, and they don’t have to really do anything special, other than just be their fabulous selves.

Hm. In today’s economy, that will never work. The whole long-term employee thing is a trap in many respects — first, because it is no longer valid. Companies don’t have loyalty to people who are loyal to them. It used to be that being a permanent full-time employee was like being married to the company — there was an expressed bond between the two, an agreement of fidelity and loyalty. But that’s not the way things are anymore. Companies are very quick to shed employees who no longer serve them.

And when I think about it, it’s like the companies are spouses who ditch their partners because they’ve “let themselves go”. I think that tends to happen in companies, where long-term employees stop thinking about how they can keep fresh and current and keep adding value to their employer. They get complacent. And they get lazy. And then when they get “out of shape” and carry on with an air of entitlement, it’s actually really easy to cut them loose. What do they add? The business world is brutal. Companies can’t afford to “sponsor” employees who don’t pull their weight.

That’s how it is, too — companies “sponsor” employees over the long term, covering for them and making it possible for them to keep working, despite getting lazier and lazier and more and more entitled. There’s no more hustle. There’s no more innovation. There’s just more and more complaining, and less and less productivity.

Now, I’m not an apologist for companies that just cut people left and right, because they can’t run their own business. I’ve worked at a bunch of places that couldn’t keep their act together, and wrecked a lot of lives as a result. That kind of stupidity makes me crazy. It’s so unnecessary — and I think it also stems from the same sort of laziness and entitlement that gets employees into trouble. People quit doing the things that made them great to begin with. And then they lose it. And get replaced. And people get hurt as a result.

But sometimes they just hurt themselves. Like these days, with the folks around me having a really crappy attitude and not taking responsibility for their decisions and frame of mind. People running off to huddle and complain and gossip. People gathering in little cliques to “circle the wagons” and protect themselves. I know what that’s like. I’ve done it myself, many times in the past, when I was younger.

It really is a sign of immaturity — I recognize it well. And time will solve that problem, I assume. Right now, though, it’s a pain in my ass. I really need to be surrounded by positive people who have a can-do, entrepreneurial attitude, and who are willing to work.

And around me, there’s not much of that sort of attitude. Just people feeling sorry for themselves.

Well, whatever they want to do, that’s their business. I don’t have to let that bother me. I just take myself and my laptop to the cafeteria and work there. As long as I have a wireless connection, it’s cool. I put my headphones on and put on some tunes, and I can make some pretty great progress. And have a nice view from the table I’m sitting at. I have my ways to get away from the little dark clouds.

I have a great feeling about today — it feels very promising, and I’m looking forward to what the day brings. I have my plan. And I remembered my datebook today, so I can see what I’m supposed to be doing with myself. It’s morning, and the sky is getting lighter behind the hill in the back of my house.

It’s a new day — why not make the most of it?


Endless headaches … continual symptoms… life goes on

What lies beneath – I live down there

For the past several weeks — on and off — I’ve been pulling together descriptions of what my symptoms are, Headaches, dizziness, nausea, feeling drugged and “doped up”, tremors and twitching in my face and hands… I usually don’t think about these things. I just get on with my life and don’t let them stop me.  Now that I’m putting them all down on paper to discuss with the new neuro, as well as review with my neuropsych.

You know, it’s funny… all this time, I’ve been really actively involved in my own recovery from TBI, and my neuropsych has had a very big positive influence on me, but not in ways that they probably intended. I think they’ve been thinking they’re helping me develop better skills and approaches — and they have.

But the real way they’ve helped, has been just being there reliably for me each week, to turn to and discuss matters of importance to me. Just being able to talk about my life to another person who can get it, is hugely helpful.

The only thing is, now I’m going down this path of digging into all these symptoms and complaints, and it feels very foreign to me. I spend so much of my time looking past the problems, disregarding the issues, coming up with ways to not have to deal with them explicitly – just work around them or do a variety of things to relieve them – that now I’m feeling the burn pretty intensely.

All the things I don’t talk about with others — because A) they can’t believe that it’s true, and B) they get all freaked out that I feel the way I do — is getting put down on paper. And it’s a trip.

God, I have a headache. And I’m sick to my stomach. Migraine? Who knows? And who cares?

There’s no sense in getting all depressed and upset about it. I can’t always do anything about the headaches — they don’t always respond to Advil, and the rest of the supposed “headache medicines” are like sugar pills to me. I’m much better off, just finding something I can focus my full attention on, and sticking with that.

Like my writing projects. Like the books I’m writing. Like the variety of things I have to occupy my attention. Fun things. A heck of a lot more fun than thinking about my headaches.

Anyway, life goes on, regardless. Or it doesn’t. Who knows how long any of us has, and why not make the most of it, while we can? I have my ways of dealing with headache that may even be more effective than medication. If you can’t feel the pain, you don’t have pain. So, if I can keep my focus on something that really captures my imagination and lifts my spirits, why not do that… instead of fretting about the headaches that never go away?

So long as it’s not something that’s life-threatening, why let it wreck my days? There is so much to do, so much to see, so much to experience… why let headaches stop me, when I know how to stop them?


Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.




Stopping. Just stopping.

Sometimes you gotta hit the button

The holiday season is upon us. All the pressure to BUY-BUY-BUY and run around doing what everyone else is doing, is at an all-time high.

I feel unusually immune to it, this year. Nothing much has changed outside of me — the commercials on t.v. are all the same, the urgency is the same as in other years, and everyone is as busy as ever for this time of year. The world is the same as it ever was, things are just as messed up, we’re getting just as much news about how sh*tty the world is, along with a lot of pleas for financial help (that — just to be clear — is tax-deductible), and pressure to use the last weeks of the year to make up for the last 11-1/2 months of general negligence.

But while everyone else is running around like a chicken with their head cut off, I’m not. I feel pretty calm, actually, and I’m not running around to all the latest sales, spending hours online looking for presents, and going from party to party.

Even if I wanted to, I can’t run around and buy-buy-buy. I don’t have the money, which is kind of a relief. I’ve got to improvise. Come up with other ideas. And I will. I received a book in the mail that looks like something my mother would enjoy. And I’ve got some other ideas for things I can get for other family members for very low cost. I’m not worrying about it. I know how to handle things. And I am. Just handling them.

I also think it has a lot to do with the everyday pressure being off me, thanks to my short commute. I now have the time to get up in the morning and do what I please for an hour or so, before I start doing what the rest of the world wants me to do. I can move about, run errands at lunchtime, come and go as I please, and still get all my hours in at work. I can live my life without having to plan and think through everything I do in detail. And since I’m not a permanent, full-time employee, I don’t have to be existentially affected by changes at work and what they mean for my future.

I can just get on with my daily life and not worry about things like that. I’ll be updating my resume over the next few days, just to log the different thing I’ve accomplished at work, and make sure my resume is current and in good shape. And I’ll be taking time to just relax and enjoy myself.

Having a long commute, along with a demanding job, is a killer for me. I realize that now. I’ve had to work so hard for so long, to get where I am, but now I’m finally at a place where I’m comfortable with myself, professionally and personally. I realize that I’ve been in a good place for some time, now, but for the past number of years, I’ve been really on edge and nervous about where I am and how I’m doing.

Part of that nervousness was due to all the debt I was carrying and the pressures of just paying bills on time. I wiped out my debt over the past four years, so that pressure is off.

Another problem was that I was in a line of work that pays really well, but is inherently tension-producing, high-pressure, and precarious. Just the nature of the work — which is all about keeping current with the latest technology developments — was personally and professionally pressurizing. I got out of that side of the industry, turned my focus to people management, and now I’m in much better shape, overall.

And of course there’s the commute. I keep mentioning it, but it was such a huge factor in my life, I can’t even begin to say. Other people just take it for granted — and in fact so did I, for the last 25 years. But now that I don’t have to travel 45 minutes to an hour (or two) each way, every day, my life has literally turned around. I can rest. And even when I don’t get a full night’s sleep, it doesn’t wreck me like it used to. Long commutes used to seriously mess with my head.

No more. No more to all of the above.

The wild thing is, so much of what was making me miserable, I just took for granted. I figured that was how things were supposed to be. That’s what I knew, and that’s how I figured things were supposed to be. It wasn’t until I was pushed to my utmost limit, that I changed things up. Lots of suffering, lots of years of pain. Lots of change — needed change.

Ultimately, I’ve come out on the other end feeling strong and clear. It’s just such a huge difference. Even when my head is fuzzy and foggy, like today, my ears are ringing, my body is wracked with pain, I’m off balance, my thoughts are jumping all over the place like little jumping beans, and every little sound and light hurts me, I still feel strong and clear. And I know I can adapt and deal with the things that are getting in my way.

I’ve got a lot to do this weekend, but before I do, I’m stopping — just stopping — to take a breath, to get myself in a good frame of mind, and get clear on what needs to happen, before I charge forward into the fray. I’ve got my list — I wrote it out last night, while I was waiting for supper to warm up — and I’ll organize it for the best and most sensible direction to take, so I don’t waste time, and I can really focus on what I’m doing.

And I may even get a nap in there, somewhere.

This is good. This is very good.


Back again… and landing on my feet

The Thanksgiving holiday was good. Traffic was insane, as just about anyone who drove during the past week can tell you. I traveled close to 2,000 miles, going from state to state to see extended family, and it was good. A lot of driving… and now I’m pretty sore from all the sitting… but it was good to break out of my routine for once.

Sometimes you just gotta trust (this guy landed on his feet, by the way)

I was really “off” my routine — I did almost nothing similar to what I normally do. I felt a little bit like the guy who jumped out of his space capsule a few years back, and fell 23 miles to earth. Like him, I had my reservations.

I ate different foods, I did different things, I had a different schedule, and I slept different hours. I didn’t sleep nearly enough, that’s for sure, but I managed. I got pretty sleepy when I was driving a few times, but I did things to wake myself up, and I took breaks when I needed to. Got out in the cold air, stretched, did jumping jacks, swung my arms around and sprinted a little bit. Whatever it takes to get there safely.

And like Felix Baumgartner, I came through okay.

I’ve been feeling pretty depressed, over the past month or so. I had a death in my family that has shifted the family dynamics. The person who died had a very complicated relationship with just about everyone — in some ways they were very loved, in other ways they were very feared. They were a challenge to deal with, although they had many, many fine qualities that we loved.

Their passing was actually a blessing for some folks in our family, and now they can rest and take a break and get on with their lives. For others, it was a deep loss, and now they don’t know what to do.

I didn’t expect this death to affect me as much as it has, but it’s changed my status in the family — it’s made me more “senior” in the generations, and my parents are now leaning on me, more than ever. Death brings that out in some people — we all become more aware of our mortality, and my folks are certainly more aware now.

So, there’s been more demands on me and my time and attention, and I believe that’s what was pulling me down. Just the demands. Being so tired. Having people relying on me, and feeling a little overwhelmed by everything. I know I can handle it. I just get very tired, and even when I’m doing well, I feel beaten down and low, when my energy is tapped out… which it was.

The other thing that’s been bothering me, is the sense that I haven’t accomplished the things I’ve intended to accomplish in life. I’m not talking about being a millionaire or being a powerful player on the world stage. I’m just talking about simple things like New Year’s resolutions and other projects I’ve started and could not finish. There are a lot of little things I have started and have not completed, and it was really pulling me down — especially since I’m that much more aware of death and how close it is.

It’s been pretty tough… but then again, it hasn’t. The tough part is not having the energy I usually do — feeling so blah and bland, like nothing really matters and there’s no point to anything. I haven’t had that steady “pump” of exuberance I usually do. And people have noticed it — tried to cheer me up, tried to get me all perky and what-not again.

I’ve noticed that people around me really do rely on me being positive and pro-active, and when I’m not that way, they get a little irked. Like I’m raining on their parade. Sorry, folks, I’m just not feeling it.

And I’ve noticed that I’m sort of the same way — I need that burst of positive energy, a certain perkiness, an “up” sense of myself, in order to get through the day.

But is that actually realistic? We can’t always been “up” and perky and feeling fit as a fiddle. Sometimes we’re tired and depressed and troubled by things that really should trouble us. It’s a little mentally ill to NOT be troubled by so much that’s going on in the world.

The thing is, I can’t let the down times derail my life. And what I’ve been working on, over the past couple of weeks, has been functioning very well without a sense of being “up” or pumped or pro-actively positive. Life goes on, even when I’m not emotionally euphoric. I can’t let my moods stop me from living my life. And in fact, when I get myself going, despite feeling down and depressed and defeated, before long, I feel that much better.

My moods follow my activity, as often as not. They shouldn’t set the stage and make or break me. I should be able to choose what I do and think and accomplish, each and every day, regardless of my emotional state.

That’s my goal, anyway.

And somehow, it’s strangely freeing. I’m off the emotional roller coaster, and I’m going about my business as I see fit. I’m not held back by feeling down and confused and depressed. I’m keeping on. Even if it doesn’t feel so fantastic, that actually doesn’t need to matter. If anything, it makes me feel better to be able to continue on in living my life, even if I’m feeling down.

As a TBI survivor, my moods come and go very abruptly. In one day, I can feel a thousand different ways, and each one would be true. My mood swings can be very extreme, as well. I can be euphoric one minute, and in the emotional basement the next. There’s not a lot of rhyme and reason to it — although being tired plays a big part in it. Things just come up, and I need to deal with them. I need to deal with my life in a constructive way, even if my emotions are running wild, and/or the rest of my system is a bit whacked.

That’s where I am, right now. I’m still really tired from the driving, I’m still overwhelmed from the family visits, my world is still evolving after the death, and my whole system is a bit “on the fritz”. I’m having trouble typing and putting words together, the ringing in my ears is pretty intense, and my main issues — fatigue, tinnitis, sensitivity to light and noise and touch, insomnia, general pain, headache, attention issues, emotional lability, panic/anxiety, anger spikes, raging behavior, confusion, difficulty understanding, trouble hearing, slowed processing speed, limited short-term working memory, balance, vertigo, difficulty reading and learning new things, nystagmus, and tremors — are being a real pain in my ass.

I don’t quite feel like I’m “here” yet. That will come, in the next days of getting rest, getting back to my routine, and eating the right foods. It will all come.

It just takes time.

It’s just good to be back home again.

A fresh new day

Get out there and make the most of it!

I’m feeling pretty good, this morning. I have the whole weekend ahead of me, and I feel much more focused than I have in a long time. I think the move to the new location at work is going to really help me. I will be close enough to home, that I can come home over lunchtime and take a quick nap. I think that’s going to make all the difference in the world. That, and not having to deal with long drives down the freeway in bad weather. This past week has been very tough, because the weather has been bad, and the traffic going to and from work has been pretty challenging.

In less than a week, that’s all going away, and I can live my life again. For the first time, really. I’ve never worked this close to home before, and it’s about damn’ time.

Also, in another couple of weeks, I can quit working from 7 a.m. till 8 p.m. (with intermittent breaks in between to do things like, oh, take a shower, drive to work, and grab a quick bite to eat). I’ve been working double-duty, fixing stuff that got broken, during my last couple of projects, making sure that people know what to do — and are doing it. Managing projects where cannot manage their own time and workload is no friggin’ fun, and that’s how it’s turned out to be.

Here, I thought that I could rely on others to do their jobs and finish up in good order. Untrue. They apparently only do what they’re hounded to do, and while I can do the “hound thing” (arf, arf, arf), it’s not my idea of a fun time.

Plus, the farther I get from the old world, where I was so totally stressed out about everything in my life, and the more I relax and come to my senses, the more I realize that I’m really not all that keen on working in technology or working for companies that produce stuff that people want, but do not need. There’s something about working for a company that provides a needed service (rather than luxury/consumer products and services) which really gets me going in the morning.

I used to have a job like that — I used to work in an industry like that. It was an indispensable line of work, and what we did was desperately needed — essential — for people’s lives.

Not so, nowadays. I’m managing projects that are all about stuff that people find cool and interesting, but isn’t critical to everyday life. And it feels like a bit of a waste, to be expending so much time and energy on frantically selling stuff that people could really live without.

At the same time, I’ve got to count my blessings. This job — once I get the hang of it — will be ultra-cushy, to be sure. It’s not rocket science, and since we’re not exactly dashing into danger and saving anyone from a fiery building, there’s less of the intense pressure I was under at my past employers. In my past “professional incarnation”, I worked for companies that actually kept people alive and made it possible for them to live longer, more productive lives. And there was no margin for error. Now, there’s plenty of margin for error.

People kind of wonder why I get so tweaked about things not going perfectly. It’s probably because of my past experience, where everything mattered so intensely. I just got used to working that way.

Nowadays, I can take the pressure off and relax a bit.

Although… that comes with its hazards. Now that I’m not all stressed out, I have the bandwidth to notice how I’m really doing. I’m not running from tyrannosaurus rexes anymore, so I have some time and energy to check in and notice how I’m doing. And in all honesty, it was easier in some ways, when I was stressed.

See, the thing is, all the stress and pressure and discomfort kept me “ON” — engaged, focused, and it kept my mind off the general sense of my life, which was not always that stellar. I didn’t have the time or energy to focus on how I really felt in my own skin, or how my overall system was operating. I had to just focus on putting one foot in front of the other and keeping a fine balance to everything, because I never knew if I was coming or going, there was so much chaos going on inside my head and body all the time, and I couldn’t afford to lose focus… or else.

All that chaos was a bit of a blessing, because it kept my mind off all the confusion, the frustration, the pain, the discomfort… all of it.

Now that things are calming down, I’m noticing the things I didn’t have time to think about before. Like the fact that I’m approaching 50, with a spouse who is basically disabled and is a number of years older than me, and we have no retirement fund. Nothing. Nada. Zilch. We need to make some significant house repairs, and we are just now getting close to being able to pay someone to do the work. I’m working, yes, but I have no disability insurance, and without a safety net, we’re living kind of close to the bone.

We’re getting by, and we do have a pretty sweet life, all in all, and we have a lot to be grateful for, yet there are significant ways we’re at risk, and it’s no fun thinking about “what might happen”.

I’ve been so busy, just keeping it together, that I haven’t dwelled on that very much. I’ve been too busy just keeping myself upright and functional.  I haven’t focused on the pain I’m in, I haven’t had time to deal with headaches, other than getting acupuncture and stretching and not eating a lot of crap. I haven’t had time to focus on the weird sensations in my face, the twitching and jumping. It’s all nerves, most likely, so I just keep going. If it weren’t nerves – if it were something else – I’m not sure I’d have the time and energy and resources to really explore all my options.

Now, though, things feel like they’re closing in on me, because I have time to think about them – and I’m not liking what I’m seeing. Or feeling. It’s depressing.

So, screw all that, I’m going to get myself busy again. On things that I want to be busy on — writing books, getting out in the day to have my walks and explorations, taking care of chores and odd jobs (like getting my cars inspected — I overlooked the fact that they were both due for their stickers, two months ago — just got busy, I guess). And just live my life. Get into my life, see what’s there, and use this fine new day for what it’s worth.

There is so much screwed up in my life right now, so much that feels weird and strange and trying… It’s been that way for a long time, but I’ve been so stressed out, I haven’t had the bandwidth to really address any of it. Now I’ve got the time. Maybe I’ll be able to address some of it. Maybe I’ll just end up keeping busy instead, because trying to hang onto the horns of the bucking bull that is my life, is a losing proposition.

We all have our challenges, we all have sh*t we need to deal with. I’m no exception.

Now I need to learn to handle the good times as well as I’ve learned to handle the bad.

And with that, it’s time for a walk. It’s turning out to be a beautiful day.




Swimming through the downwelling — Got my STP going on

Good stuff for a tired-ass rainy day

When in doubt, Stone Temple Pilots are good company to keep. I’m listening to No. 4, and it’s as good as ever. I went through a period, over the past few years, when I didn’t listen to much rock music. It was a lot of electronic stuff — trace and whatnot. Always good for getting me flying down the road, to and from work.

Lately, though, I’ve been getting back to my good old rock ‘n’ roll. Lots of hard rock, as I drive to and from work. And it feels normal again. Like I’m picking up where I left off, a few years back.

It’s like I went on a detour for a few years. Thinking I was going to be or do something different. I blame that last job I had, where I was so out of place, and I just didn’t fit in at all, and I needed to take the edge off things.

The whole last ten years feels like a big-ass detour for me. It was that damn’ mild TBI in 2004 that screwed me up. I’m still pissed off about it, and how it derailed me. I’ve been swimming upstream, trying like crazy to get where I’m going, fighting a current I couldn’t see — a downwelling, as they call it in the ocean – watch a video about surviving downwelling here.

In a downwelling, when you’re scuba diving, an invisible current hits you and carries you down-down-down into the depths — potentially past your approved depth. It can take you down very quickly — fast enough to increase the nitrogen in your blood enough to make you feel — and act — drunk. And also pressurizing you very quickly. It’s crazy. If you get caught in a downwelling and can’t get out, you’re done for.

That’s kind of like what chronic mild TBI / concussion is like. Most people see their issues resolve in weeks or months, but some of us are stuck with them, and they can catch us unawares and plunge us into the depths — towards the abyss — before we even know what’s happening. It can be deadly. And if you choose wrong, you can get totally screwed up.

I didn’t realize until late 2007, that there was really a problem — three years past my injury. Everything went downhill, and I didn’t even realize it. Money was disappearing so fast, I might as well have set piles of it on fire. I jumped from job to job, not realizing how it would affect my future job prospects. I could not read, I could not learn, and I felt like I was literally disappearing from my life. I could not go outside very much, because of my light and noise sensitivities, and I had cataclysmic panic attacks that felt like seizures.

I was in the grip of a “life downwelling”, and I didn’t know which direction to swim to escape.

A number of things happened to help me along the way

  1. I realized that something was wrong
  2. I realized I needed to do something about it
  3. I hunted high and low to find information and people who could help me understand what was happening
  4. Almost by chance, I connected with an excellent neuropsychologist who was able to help me soldier through
  5. I just kept going, no matter what

I’m now at a place in my life where I’m back on track. My mountains of debt are gone, my job situation is stable, and I’m able to read again.

And yet, I feel like a stranger to myself.

Technically, I supposed no one really knows themself inside and out. We all delude ourselves to some extent. But with TBI, it feels to me like there are a ton of gaps that I just can’t fill. I don’t even know where to start. It’s like my life is a big hunk of swiss cheese with a lot of holes in it, and I don’t even know the holes are there, till it’s too late. I’m in trouble again.

Anyway, STP helps me get my mind off that. They help me just keep going, even when I’m not feeling up to it. Keeps me swimming — out of the downward spiraling current and up towards safety again. A good dose of heavy guitar and rock lyrics gets me back on track in useful ways.

Gradually, I’m coming back to where I want to be. It takes time. And I need company, along the way. STP is good company. Thanks, guys.

Music is the best company I can think to keep. It’s there when I need it, and I can always turn it off, when I’m done for the day.

Speaking of the day, I’ve got to get on with it. I’ve got a handful of things I need to do today, including resting up. It’s been a long, long week, and I need a break, for sure. I’ll get that break later today after my chores are done, and I can comfortably settle into my bed, pull the covers over my head, and just check out.

Looking forward to it.

But in the meantime, there’s always hard and heavy rock music.