Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

My last decent vacation in a good long time…

The way life goes, you never know how things will shape up. I’ve had so many hopes and dreams over the years, and so many times, I’ve been on the verge of really breaking through… then something happened. And that “something” was often a TBI.

I was just getting my act together in elementary school, finding my footing with my peers and getting involved in a special program for “gifted” kids and discovering what worked for me, when I got hit on the head and things changed. I became combative. Difficult. A behavior problem. So much for the gifted program. They showed me to the door on that one.

My family relocated, and I was finally figuring out how to interact with the people around me (who all talked with thick accents I could barely understand). Then I fell out of a tree and wrenched my neck. And I kept hitting my head while playing sports. Football. Soccer. Just playing outside. Hitting my head was routine. I can remember a number of really significant blows to my skull that disrupted my consciousness, but they happened against a backdrop of regular clunks on the head. It seemed like every time I got on my feet and started feeling like I had a grip on my life, I’d get hurt (again), and I’d be back at square one.

I eventually got out of my parents’ house and got on with my life. When I drank a lot, I fell down — a lot. I may have (probably) hit my head a bunch of times, but I don’t remember much from the 4-5 years after I left my parents’ home.  Those years that could have been some of my best (and in some ways, they were). They could have been years of exploration and learning and experience like no other, but instead they were mired in the muck of hangovers and all the confusion that comes from not knowing what happened the night before. A few scrapes with the law… being ostracized by my peers… some violent confrontations… making money by borderline means, just to get by… it was definitely an experience — that’s for sure. But it took me years to recover from the damage I did to myself.

After I was in the working world, driving to work each day, I got in a bunch of car accidents. They weren’t huge deals, mostly just fender-benders, but whiplash and getting clunked on the head didn’t help matters any. During years when most of my peers were getting on their feet, finding their way in the world, I was scrambling. Trying to catch up, after being set back. I got a job, then got hit by a speeding door-to-door salesman. I left that job without saying why. Just left one day and never went back. I relocated to a really great city, but just before moving, I got rear-ended and spent the next several months in a manic haze.

Years later, I had a pretty decent job with a lot of responsibility, then got tangled up in a 7-car pileup, and everything fell to pieces there, too. That worked out okay in the end, because I found a much better job and a completely different career track, but it did a number on my self-confidence, and it caused me to pass up a golden opportunity that my new manager laid at my feet (and begged me to take). I can only imagine how much more stable my life would be now, had I actually taken them up on it.

The last and most debilitating TBI was when I fell down a flight of stairs at the end of 2004. I was just 18 months away from having some investments mature, and if I’d been able to hang in there and keep up with my life, I could have repaired and paid off my house, gotten rid of my debt, and really solved a lot of logistical problems that are the kinds of things that only money will solve. None of that got solved. It all fell apart. And it’s taken me 12+ years go piece it all back together to just a semblance of how things once were.

So, what does this have to do with my current vacation (which is now drawing to a close)?

In the course of my life, I’ve never known just when everything would fall to sh*t. It’s partly me being oblivious, partly me not having a reliable crystal ball that lets me peer into the future. So, all those times when I just assumed I’d have time to do this, that, or the other thing… all those times when I thought I was set… all those times when I didn’t pay attention to what was Right In Front Of Me… in so many cases, they were the last hurrah for that part of my life. The last shred of self-confidence. The last vestiges of feeling competent. The last months of feeling like I could actually plan my future with certainty. The last weeks of being able to take certain things (like how my brain worked or how I’d react to experiences) for granted.

I didn’t savor those things when they happened, because I was too damn’ optimistic. Too oblivious to just how sh*tty life could get for me. Not experienced enough to realize that things could get That Much Harder for me in a moment’s time. I took them for granted. I didn’t wring every last bit of goodness out of them, while the goodness lasted. And now I just look back on a lot of wasted opportunities and chances I totally missed enjoying… all because I thought there would be another time that would be somehow better.

I don’t believe that anymore.

Especially not this morning.

From here on out, my vacations will probably be a lot more work than relaxation, a lot more frustrating than renewing, and a lot less worth it to me. But they’ll continue. Life goes on. Sh*t gets complicated. So it goes.

For today, I’m just going to enjoy myself. Because this might just be as good as it ever gets.

When things don’t turn out… as expected

I can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.

A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.

Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.

And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.

Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.

When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.

Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.

We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.

My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.

When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.

So much for vacation.

There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.

We got  home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.

Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.

So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.

The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.

But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.

And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.

But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.

And take care of myself in the process. Because I still have a lot of life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.

And so I shall.

Whatever else happens.

Vacation time

The road ahead is a lot more straightforward than the road behind me was

I actually get a few days off work, starting today. Well, starting at 11:00 today — I have a meeting at 10:30 that I have to lead. But then, I’m done.

It’s been a really challenging time, lately. Morale is terrible at work, and it’s like wading through thick, sticky mud, trying to get anything done. My own morale is not great, I have to say, but I keep on with my work, regardless.  For me, the real pleasure comes from actually being able to DO the work. 10 years ago, that wasn’t the case. I was pretty much of a series of accidents waiting to happen.

• My short-term working memory was shot.
• I couldn’t understand what people were saying to me.
• My ability to plan and follow through was negligible.
• My temper was short, and the recovery time was long.
• My spouse was afraid of me.
• I couldn’t seem to keep a job for more than 9 months at a time – and that was pushing it, for me.

It’s all very different now, thank heavens. I’ve worked at it. I’ve rehabbed myself. I’ve pulled out all the stops to figure out how to restore myself to my former abilities — and the very positive thing is, I’ve actually exceeded my former abilities. I now have much better skills than I had before my mTBI-inducing accident in 2004. Because I could finally see what was going wrong with me, I got help from someone who could assist me, and I worked at it.

Every single day.

It was my other full-time job.

I have to constantly keep this in mind, because it’s so easy to forget. I get caught up in my daily life, I get wrapped up in my everyday experiences, and I lose sight of the fact of how far I’ve come. I get tired. Every day, I’m wiped out at the end of it all, which makes it difficult to be thankful for anything. It makes it difficult to even think or keep my temper cool. Lately, I’ve been snapping a little more in the evening than I’d like, and that’s got to stop.

I’m hoping a good vacation will help with that. Even if it’s just for a long weekend at a waterfront down three hours away. It’s something. It’s a break from the regular grind. And it’s a much-needed “reset” for both myself and my spouse.

So, as I go through my daily life, these days, surrounded by people who are none too happy to be at work and who are deeply fearful about their future, I think about how much I have to be grateful for. I think about how much better I’m doing that I was in 2007. And I think about how much farther I have to go.

Once upon a time, all my dreams had evaporated. Once upon a time, I could see no clear path forward. Once upon a time, my life was collapsing around me, and I didn’t know why.

It’s not like that, anymore.

I’ve come a long, long way.

And I never want to lose sight of that.

Oh, this is so much better

If I hadn’t messed up my laptop the other day, it would be slower than it is right now. I had a whole bunch of crap programs running “in the background” that I didn’t need at all.

And now my laptop is much faster. Cleaner. Nicer.

So, it’s a good thing that I messed up in a small way. Because that let me fix things in a big way. Plus, I learned a bunch of new tricks for how to make my computer really work much better.

The main hurdle in my way was my anxiety and thinking that I couldn’t figure it out. But I took my time and was patient with myself and I got a good night’s rest before I managed to fix it. When I stopped worrying and just “worked the problem”, things came together for me.

Bad experience for half a day.

Good experiences to come for weeks and months and years.

How may I dismiss you? Let me count the ways…

I read something really bothersome this morning – so bothersome, it’s tweaked my last raw nerve and put me in a mood.

It’s an article entitled “Top Ten Psychosomatic Symptoms” and apparently, it takes ~1 minute to read.

That should have been the first red flag. Nothing good can come of a diagnosis “aid” that takes 60 seconds to read.

Lo and behold, here are the top 10 symptoms created by your mind when the brain “attempt[s] to throw a person’s consciousness off guard by inducing physical changes in the body, in order to prevent the person from consciously experiencing difficult emotions, such as rage, sadness, and emotional distress.”

Oy. Here we go… all the ways that we’re not actually suffering from a real illness. The following may be all in your head:

1. Chronic Pain Syndrome – not real pain… you just don’t want to deal with your emotions
2. Fibromyalgia – odd… I thought it was settled, that it’s a real thing.
3. Carpal Tunnel Syndrome – because repetitive stress injuries… nah, not really a thing.
4. Gastrointestinal syndromes – maybe you should just try to relax
5. Migraine headaches – apparently, the top-trending medical issue on Twitter is a chimera
6. Frequent need for urination – because yer innards would never shift south and put pressure on your bladder, now would they?
7. Tinnitus and Vertigo – okay… clearly the person writing this has never dealt with this crap on a daily basis… for years. I invite them to walk a mile in my shoes.
8. Allergic phenomena – ’cause, like, our world is completely hypoallergenic. Not.
9. Skin rashes (Eczema, hives, acne, etc.) – okay, possibly…
10. Eating disorders – it’s been a long time since I read a more gross oversimplification

So, that’s the Hall of Shame for today, folks.

Be glad you don’t have the author for your therapist.

I sure am.

The things we do to our heads – and our lives

I pretty much took the weekend off. I had been planning to make some progress on one of my projects, but it turned out to be a better use of time to just relax — and let my mind go where it will.

All week long, I have to keep myself on point. And that gets old. By Saturday morning, I know better than to continue with the compulsiveness of the past five days.

Funny how, on Fridays, I am always so convinced that the weekend is going to be filled with productivity… as soon as I get away from the time suck of my day job. But in fact, there are two things that play into that internal dynamic, which both send the wrong signals.

First, I am tired. And when I am tired, my mind gets rigid. I get locked into very narrow ways of thinking, and I lose sight of anything else.

Second, by Friday, I have forgotten what freedom feels like. My routine has taken over and is propelling me forward. I’m no longer thinking clearly. I’m no longer bothering to think, period. Rote repetition has taken over — it kicks in around Wednesday night — and it feels like salvation to me, because my brain is no longer working the way I want it to.

The last two days of each week find me “in a groove”, which is to say, I’ve abandoned creative, inventive thought, and I’m just chugging and plugging along in my rut. Something tells me that I’m quite happy there, but if truth be told, I’m exhausted and I have since stopped really processing much of anything. My reaction times are slowed. And I’m not thinking clearly enough to realize just how big of a hit it’s taking.

I’m also so low on energy, that I’m not paying attention to how this is making me feel. It’s incredibly upsetting to me, that my processing speed is slower than I’d like it to be. It’s noticeably slower than it used to feel, and it’s so frustrating to be forever two split-second “beats” behind everyone else. It’s like I’m that kid running behind the rest of the gang, calling, “Hey! Wait for me!”

And it’s crushing. Because it never felt like this before.

Though, when I think about it, it never felt like this before I started my neuropsych rehab, because I never really engaged with others directly, like I do now. It could be that I’ve been out of synch with everyone and everything for most of my TBI-riddled life, but it only really started to have an impact when I started engaging with the rest of the world. For so, so long, I kept to myself and simply played along. I chose friends and partners who were really good at interacting with the outside world — extroverts extraordinaire — who could do the social work for both of us.

But  now that I’m getting better about engaging with the rest of the world, it feels terrible. Because I really sense just how out of synch I am. Conversations are tough. They take a lot of work. I can do it, but it’s work. And since I’m involved with people every day of the workweek, by Friday, I am Wiped Out. Full stop.

Which makes my Friday plans to be ultra-productive over the weekend quite amusing.

But that’s not what I started out wanting to write about, today.

It’s Monday. Supposedly we’re going to get an announcement about layoffs in our division this week. I’m told that in the past, if people were getting laid off on Friday, they were told on Monday. So, if that is happening again, there will be some very unhappy people at work today.

I really don’t know where I fit in all of this. I know that I’m much more technical than anyone in my group (my boss told me so on Friday, as though feeding me a little spoonful of hope), and I have a wide variety of skills that make me versatile and easy to plug into different situations. I’m resilient and resourceful, and I get the job done.

But that might not mean anything.

You just never know.

The thing is, my head has been going crazy, coming up with all sorts of different scenarios. I’ve updated my resume and my LinkedIn status is current. I’ve been going through all the different scenarios in my head, figuring out what I’ll do, so I’m prepared.  And I really do feel prepared. The thing is, nobody knows how things will shake out, just yet, and like most people, my thinking can be very “creative” in the face of uncertainty.

It’s easy to make myself crazy. It’s easy to feel nuts, when there’s not enough information. And it’s so, so easy to fill in the blanks with past experiences, when the present situation is really nothing like the past.

It’s all part of our minds work, of course. We desperately need to feel we can predict things. Predictions make us feel secure, like we know what’s going on — when in fact, we know nothing of the kind. Astrology makes us feel more confident. Expert opinions and pontifications make us feel like we’re “in the know”. Basically, anybody who offers us a plausible prediction for what will be, is our friend. Even if those predictions are dire and wretched, they still make us feel safer — perhaps even safer than people who predict good things.

And when others don’t provide predictions and indicators, we make up our own. We’re really, really good at that. We’re experts at making ourselves mentally ill about it, too.

So, all these mental gymnastics have been keeping me busy for the past four days. Which gets tiring.

But at least I got rest over the weekend, which did wonders for my head. Just taking time out, getting things off my plate, finishing up chores early, so I wasn’t rushed late in the day, yesterday… an napping. Sleeping.Getting some rest. That’s exactly what I needed.

Not more productivity.

Oh, God — not more productivity.

Onward.

Annnnddd we’re back

Today I am up early. I woke up early, and despite needing to rest, I could not get back to sleep. So, I got up. And here I am. Thinking about Thanksgiving and the lessons I’ve learned from the whole experience. It’s just experience, after all.

Thankfully, the mechanic came through, yesterday. Woot. They finished up the repairs to the disabled van yesterday afternoon, and now we’re good to go for the return trip home. I don’t have to renegotiate my vacation plans with work. I don’t have to explain an unfortunate adventure to my parents, and shift the times when we were planning to see aging relatives. I don’t have to calm down my spouse over every little thing that comes along. They can relax, now.

Well, supposedly. On this trip, they have been on edge for much of the time. Their cognitive impairment and behavioral problems are really standing out, their anxiety really running the show.They’ve yelled and cried and harangued and exaggerated and done a very poor imitation of someone who is 100% functional.

And their side of the family, ironically, are the ones who are having the most trouble dealing with their behavior. My side of the family practically oozes compassion for the needy and marginalized, and my spouse is acting very much “out of bounds” of respectable behavior. With my parents, my spouse’s difference are not as pronounced and extreme. But at my in-laws’ place, their behavioral issues really stand out. And it frustrates and angers them.

I don’t think my spouse’s family realize that there’s some cognitive impairment going on, and I’m not comfortable telling them, because they just don’t handle that stuff well. They’re very mainstream — different from my parents — and they don’t have a lot of diversity where they live. People who are cognitively impaired are “retarded”… or deserving of pity, rather than respect. There’s a lot of superstition here around the brain, which just makes things harder. Plus, they have very aggressive, mainstream ways of dealing with things — basically, take a pill, have a drink, follow along with what everyone else is doing, and don’t question too closely how things are done. If a pill or a drink won’t fix things, they sometimes believe a gun will. And they don’t have a lot of patience for all the gray areas that surround brain injury and cognitive impairment. Plus, they do not know anything about my spouse’s cognitive issues. We’ve never told them, and I doubt I ever will. Unless I have to. They just aren’t much help, when it comes to that stuff.

Maybe they would be, if I told them and they learned, but I just don’t have the patience or the fortitude to manage their adjustment along with everything else.

So, it’s a multi-source challenge, coming here. First, I have to deal with  my spouse. And then I have to deal with  my in-laws. And I have also had to deal with the broken-down van, negotiating social situations where I cannot understand what people are saying to me — because of their accent, and also their pacing. I’m not hearing clearly. And I’m tired. I’m slowed down, and it makes me nuts.

All the while… I do my best to keep calm. I hold firm and don’t let my head run away with me. It’s not easy. And it’s not verbal. When I’m pressed to use words, everything gets scrambled up, and I get angry. Enraged in passing moments. Because when everything is hitting the fan, and I’m pressed to verbalize, the solutions I can see in my head start to dissolve. And I lose my way.

I hate losing my way. Especially when things are tough.

But of course… It could have been worse.

The van repairs could have cost me three times as much — essentially draining my bank account.

The work could have take three days, instead of the better part of one day.

The one repair could have created even more problems that rendered the vehicle undriveable.

And all the while, my spouse could have had a nervous breakdown, as they have done several times in the past, while visiting this area, so full of unresolved issues, so full of pain and excruciating family memories.

But none of that happened. And now I don’t have to carry that with me, anymore.

Of course, the residue is still there. I am tired out, worn out, wrung out. I’ve been tired ever since the start of this trip… but I’m not sleeping well. Oh, the pain. Holy crap – if I don’t move regularly throughout the days, I am in so much pain. And people here don’t move. They sit in front of televisions. They sit in their cars. They sit in front of computers. They don’t move around, except to move from one seat to another. And my left hip and back are killing me. Plus, the mattress… Good lord.

I’m dizzy and slowed down, with a reaction time about half of what it usually is. I’m not hearing very well, but I am extremely sensitive to noise. It’s like I’m walking around in a bubble of static, floating 6 inches above the earth in a jittery envelope of electro-charged plasma. Light sensitivity is less of a problem for me, right now, but the whole spoken word thing is a real challenge. And when I stop talking, everybody gets nervous. Because that’s how they allay their fears — by talking. And I’m not doing that.

Also, when I get quiet, they seem to think I’m going to blow up. Because in this family, the signal that someone is going to fly off the handle, is when they get very, very quiet and don’t say more than a few words at a time.

I’ll get some relief today when we drive back to my family, but that’s not much solace. My side of the family are the polar opposite of this family here — in constant motion, constantly thinking, constantly interacting, no television, just a lot of heady talk. Most of it about God.

Oh, great pain and suffering… great wailing and gnashing of teeth!

Then again… Ha. I just have to laugh. It’s kind of ridiculous, this whole thing, and what I really need is to keep my sense of humor about me…. And get myself out of my foggy head.

Good Lord. Everything gets so heavy, here. And when we leave, I’m sure the tongues will wag about all the things that are wrong with both me and my spouse. It’s recreational, the fault-finding and judgment. It makes people feel better about themselves and their lives. So, in that respect, it serves a purpose. For them, anyway.

It really has nothing to do with me. My life will go on, regardless of what others think and say. They’ve been talking about me — and my spouse — and both of us together — for as long as we’ve been together, and that has never kept me from living my life. Not one bit

Am I rambling? I feel as though I am. The sun is rising over the mountains to the east, and I’m completely out of it. But life goes on. I know to be careful. I know to take my time. I haven’t felt this bad in a long time, so that’s something to be grateful for.

There’s a lot to be grateful for. And in the end, it’s really just a matter of where you put your attention — on the good, or on the bad. Bad will always happen. It can’t help BUT happen. If nothing else, I’ve got a hell of a story to tell.

Onward.

Covering my tracks

This really is a turning-point time for me.

I’m in the process of cleaning out nearly 50 databases for websites I created over the past 15 years.

This is not a small thing. It’s saying good-bye to a lot of labors of love (well, farewell, really, because I’m getting backups of them all before I delete them).

It’s a little nerve-wracking. But it’s high time I did this. I have been building websites as a way to keep myself occupied and technically sharp, for many years, but I’m at the point now in my work and profession, where the stuff I’ve been doing is really old news.

I really belong out in front. Not following along, using what other people have built for mass consumption, and getting stuck with managing the fruits of their misinformed labors.

I don’t want to be mean-spirited. I’m just kind of sick and tired of mass-consumption “content creation tools” that were not properly designed, to begin with.

I’m kind of “over” mass-consumption anything. Maybe I’m just getting older, losing patience, getting a little slow on the uptake, but it seems to me that I’ve never actually been all that comfortable in the mainstream, flowing along with everyone else.

I need to be true to myself and get back to the frontier — where I belong.

It’s funny. Once upon a time, I was out in front — building websites before most people even had email. Then I got a good job doing that, and I got pigeonholed by the corporate overlords who wanted to keep me in my place. I never quite got used to being in that place, and I moved around a lot in that good job I had — taking on different responsibilities and challenges.

Then I fell. I got hurt. My head wasn’t working properly. I couldn’t see my way forward, and I spun around in circles a lot. A whole lot. In fact, all these websites that I’m taking down are really a symptom of my malaise and frustration and lack of direction, over the past 12 years — and even a few years prior to that.

I’m past it, now. And taking down all these sites and starting fresh — with only the ones I want to keep, moving forward — is a definitive step towards cleaning up my past.

And making way for my future.

Onward.

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

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.