When things don’t turn out… as expected

sunset and clouds reflected in waterI 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

road leading into the distance, with country landscape surrounding it
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.

Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

More clarity – yes, more clarity

clarity-of-thoughtSo, I posted a TBI injury and recovery story from a reader, the other day, and it seems like a lot of people think her story is mine. Not at all.

Well, of course, there are some similarities, but it’s her story, not mine. I’ve just gone back and updated it with a notice at the very top and quotes around the story — it was easy to fix.

I wish all misunderstandings were that easy to fix.

I’ve also been fielding some comments in Twitter about things I’ve said, that apparently came off wrong. It is really, really easy to be misunderstood on Twitter. I’ve had people thinking I was attacking them, or their sport, or something else they held dear… and then they “fought back” with both barrels blazing, when all I was doing was raising some questions.

All around, it seems like the online world is just primed for misunderstanding — and consequently, a fight. All around us, we are trained to see opponents and aggressors. And that’s a huge problem, when you can’t even disagree with someone and/or challenge their thinking without being seen as an aggressor (or micro-aggressor). There’s a fantastic article in The Atlantic about this (click here to read it), which I came across a while back. It explains a lot — especially with regard to the younger generation who seem to have amazing potential, but also seem incredibly hung up over every little thing.

All the fighting… good heavens. There’s a reason I backed off Twitter for a while. But there’s so much good research coming out that gets posted there, I have to check it out. There’s seriously some great reading available, thanks to all the tweets flooding my feed. I think the key is to not follow a lot of people who get snarky and vicious and outraged. Especially about politics. ‘Nuff said about that.

Anyway, I’m taking more time to think things through before I say / post / tweet them — or trying to, anyway. It’s hard, when the moment to respond presents itself, and there’s something in your mind that seems 100% appropriate and on-point.

I should know by now that that feeling of 100% certainty is a tip-off to the exact opposite being true. The more convinced I am of something, the more likely I am to be very much mistaken. So, I do know that. But that doesn’t always rule how I react and interact. Impulse control issues and all that.

I guess that’s what keeps things exciting. I just have to keep revisiting things that need a little tweaking… making sure I don’t do more damage along the way. I also need to know when to let it go. Not everything needs to be fixed the way I want it to be. It’s also important that I hold my ground and not give into bullying. Just state my case, say my piece, and leave it at that. If people understand, then great. If not, there’s no guarantee I’ll convince them.

Sometimes it’s best to just move on and leave it at that. Or just stop following some people… which I have been doing regularly, when their tone gets too unremittingly intense.

Anyway, it’s a new day. It’s Saturday. I have some time to myself today, and my headache has abated somewhat. I’ve got some reading I want to do, as well as some thinking. “Tinkering and thinkering” as I’ve heard it described in something I read recently. I’ve always got to be careful when I have free time, because I can very easily get carried away in all sorts of distracting directions.

Last week, I was caught up in researching mind-control techniques of expensive large group “personal growth” programs… and a week before that, I was caught up in some fringe neuroscience that is so far beyond me, it became apparent after two days of compulsive reading that I couldn’t even scratch the surface enough to wrap my head around the name of the phenomenon. Admittedly, it is good for me to range a bit farther afield in my reading and studies, but I can get too caught up in too many fringe activities, and then I lose valuable time for the things that I really do want to work on.

Like the handful of books I’ve started to write and got 3/4 of the way through, but are all waiting for me to pay attention to them again, so I can finish them up.

Anyway, today is different. I’m not feeling great — and ironically, not feeling great is a key factor in how well I am able to focus. When I’m feeling rested and fully functional, I get pulled off base very easily — all that energy gets spread too thinly — and I get nothing done.

But when I’m not feeling great — I’m at maybe 65% today — I know I have to be more deliberate in my activities and pick and choose. So, more gets done. And oddly, I have more clarity when I’m under the weather, than when I’m feeling at the top of my game.

I wouldn’t mind feeling just a little better today. Who knows? Maybe I will by the time the game is on this afternoon. I’ll pace myself. Take naps when I need to. And pick and choose the things I want to do.

That should be good.

Onward.

March is Brain Injury Awareness Month

And this month, the Brain Injury Association of America is putting a special emphasis on concussion with their campaign “A concussion is a brain injury. Get the facts.”

I’m really happy they’re doing this. As someone who has sustained a number of concussions in the course of my life — several of them during sports events — this topic is near and dear to my heart.

The more we know about it, and the better trained coaches are to recognize and respond to these events, the better off we will all be.

Because concussion doesn’t just affect the individual who’s been injured. It affects all the people they interact with, their families, their teachers, their peers. And in the long run, it can affect society on a very large scale. Violent crime and repeat offenses have been connected with TBI,

About eight years ago, a study was conducted which tested the hypothesis that TBI is related to violent crime. What they found was that more than half of the participants in the study (half of whom had been convicted of domestic violence, half of whom had no convictions) had sustained a TBI — the violent offenders had had more severe injuries.

Knowing about TBI and responding appropriately to it is important not only for the criminal system, but for all of us in everyday society. Whether it’s dealing with anger management issues, attention issues, poor performance which cannot be explained any logical way, or a host of other issues that come up after TBI (sleep issues being a big one for me as well as many others), the after-effects of TBI (even “mild” TBI) can have dramatic and long-range impact on many, many aspects of our lives.

And since we know, deep down inside, that none of us is really an island, we can safely way that individual problems can and do become collective issues.

So the more we know about TBI as a whole society, indeed, a whole world, the better equipped we can become to respond appropriately to it.

I hadn’t actually intended to write about this today, but m reminded me that it’s Brain Injury Awareness Month, so I’ve got to make mention of it.

I guess maybe I’m supposed to give more thought to the other things I was going to write, before I write them.

All good 🙂

Anger, anger, and more anger

temper strikeOne of the things that can make TBI particularly difficult, in the ensuing weeks, months, even years, is anger issues. Rage issues. Flying off the handle and attacking others for no good reason that they can see.

There are a lot of reasons this happens. Some of them are:

  • Fatigue – your system is compromised by too little sleep and/or too much activity (with me, the two go hand-in-hand), and you don’t have the energy/wherewithall to stop yourself from going off
  • Fear – there’s nothing like a sharp spike of adrenaline, combined with anxiety and fear to set you off. Fear has a way of clouding your judgment, so you not only under-think situations (from fatigue) but you also overreact to the circumstances (which may or may not be true).
  • Frustration – when you’re trying to get something done/said/understood, and it’s just not happening, no matter how hard you try, patience wears thin — especially with yourself. My frustration tends to be directed inwards, though it also gets directed outwards. But the inward-turning kind is actually a lot worse for me. It makes me mean and aggressive. The worse I feel about myself, the angrier I get with life in general, and the more I tend to blow up.

It certainly doesn’t help that my brain gets into an uproar and starts getting into a biochemical soup drama, so that even if I wanted to think straight, I can’t.  The constant restlessness of my brain, coupled with the toll that agitation and fatigue take, can combine for a pretty potent mix of explosives.

So, what can I do about it?

  • At a very minimum, be aware that I’m angry. It often feels like something completely different — it feels like I’m just revved, and I don’t recognize the emotional piece of it. It may sound simple, but realizing that I am actually angry is a big challenge for me.
  • Realize that my anger does not necessarily make sense to others. What I’m thinking and feeling may be entirely unique to me.
  • Realize that my brain may be sending me wrong signals, and the surge of emotion that’s coming up may be simply a biochemical response by a physical system that is WAY overloaded and highly sensitive.
  • Remember that the long-term effects of a blow-up are probably not worth the satisfaction I get from venting. No matter how justified I feel about my anger, it can do much more harm than good. I have to think about whether I want to spend the next days/weeks/months patching up the damage I do to myself and my relationships with others, thanks to uncontrolled anger.
  • Keep myself in check. No matter how justified I feel, the more revved I get, the more I need to step away. I need to do whatever I can to remove myself from that situation, before it escalates and turns really nasty.

It’s not a perfect process, but it’s something. It’s an ongoing thing, and I’m far from perfect. But ultimately, life has a way of teaching me the lessons I need to learn, so if I just keep at it, eventually I do make some progress.

The downward spiral of fatigue

It’s wild – it starts with the best of intentions. It’s exciting… very exciting to life my life, to go-go-go, to do lots of things and get tons of stuff done.

But if I don’t watch myself, I can get into trouble pretty quickly. If/when I get over-tired (and at the rate I tend to to, it’s usually a question of when I’ll get over-tired, versus if that will happen), a downward spiral starts in, that just won’t quit, till I start to rattle and shake like the USS Enterprise being pushed through an asteroid field at full speed. (And I hear Scotty yelling, “Cap’n, she’s breakin’ up! I can’t give ‘er anymore!“) I question my sanity, my ability to cope, my ability to live, and I’m exhibiting symptoms that someone who doesn’t know better would interpret as mental illness.

It’s not mental illness, per se. It’s my brain acting strangely under abnormally taxing conditions.

Here’s how things steadily go downhill…

The Downward Spiral of Agitation and Fatigue

And before I know it, I’m in trouble. I’m angry, I’m emotionally volatile, I’m raging, I’m blowing up at people, I’m melting down into a pile of quivering agitation, I’m irrational, I’m over-reactive, I’m hyper-active, I’m everything I know I should not be, but I am powerless to prevent it.

Also, I am in pain. Not just the muscular/skeletal pain that comes from over-exertion, but the surface pain that comes from fatigue, that makes everything hurt, from my clothing to human touch. It’s awful, and there’s nothing to do to stop it, when it’s full-on.  Advil doesn’t help. Only sleep does — days and days of extra sleep.

The thing is (the pain aside), a lot of the behavioral problems that come up are a result of how I perceive myself in relation to the rest of the world. Yes, I’m emotionally volatile. Yes, I’m losing it when I should be keeing cool, but it’s not so much that I am in trouble over things I’m doing — the real trouble happens and I get bent out of shape, when I misinterpret what I’m doing. I assume that because I’m having problems keeping things straight in my head and I’ve gotten turned around, that I’m screwing up (yet again) and I’m a mess, I’m broken, I’m damaged, I’ll never amount to anything, yada-yada-yada-yada-yada-yada-yada-yada-yada… an unbelievable amount of agitation results, which feeds back into the insomnia/fatigue loop. And that just makes my behavioral issues worse.

I’ve been seeing this more and more, lately, as my sleeping habits have deteriorated. They truly have. It’s been very fun and exciting to do things late into the night (as in, after 10 p.m.), but it’s cost me dearly, in terms of peace of mind, not to mention being able to deal effectively with increasing demands and challenges.

Stop the madness!

Seriously.

So, I have re-prioritized rest. I’ve bumped it up to the top of the heap. And I’ve made some small but important adjustments in how I do my work, so I have a better handle on things.

Objectively speaking, I’ve actually been dealing with some of the challenges and demands quite well — but because I’m so tired, I can’t really accurately assess how well I’m doing. So, when I feel like I’m having trouble, I assume I’m not doing well at all… and my successes are nearly lost on me. Unless someone can talk me through them. Like my spouse or my neuropsych.

Speaking of my neuropsych, I had a really great meeting with them  last night (thank heavens), on the spur of the moment. I was in town, they were in town, they had an opening in their schedule, and I had a sudden cancellation on mine. So, we managed to meet for a few hours. And after checking in with them about some recent experiences that had thrown me for a loop, I realized that I had actually done extremely well under very demanding and challenging circumstances. The biggest hurdle in all of it, was me being so tired that I couldn’t think clearly about what had really happened that was good.

I was so tired, nothing seemed good. But it actually was. So, my neuropsych talked me back from the brink of despair. And then I went home and  got to bed at a decent hour — 9:30 p.m., thank you very much! — and I woke on my own after 8 solid hours.

Wonder of wonders.

And suddenly, the world looked a lot better. The “mental illness” subsided, my mood disorder cleared up, my crappy attitude and biting self-criticism subsided, and I was able to get on with my life. Like a normal person.

And I’m back on track with watching myself more closely than I had been, taking my issues one at a time through the course of each day, and addressing the real underlying problems when they come up, so I can get on with my life, despite them. I’ve refined my daily log for what I have planned and what I really do. I’ve become quite diligent about keeping notes on my daily activities, and now I’m furthering that even more with a better kind of journal that helps me a lot.  Tracking my activities and the results is one sure way to see how I’m doing, from day to day. My brain will tell me any number of things about how I’m doing — many of which may in fact be untrue. But if I’ve got my notes, I can see for myself how I’m doing.

Onward…

The MTBI Downward Spiral

I’ve written before about how ignorance and narrow-mindedness produce greater disability than injuries alone.

TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

Here’s how you can get into trouble, thanks to a TBI:

  • TBIs have a nasty way of slowing down your thought processing speed.
  • Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
  • Increased distractability can lead to “careless mistakes”.
  • These can lead to arguments with others.
  • Arguments can escalate if your flashpoint threshold is low.
  • A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.

For example — say a guy with a wife and two kids and a good job is in a car accident and smacks his head against the car window. I’ll call him (Car Accident Guy.) He’s knocked out for a few minutes, and when he comes to, the EMTs take him to hospital, check him out, determine there’s no serious damage, and turn him loose. He goes  home and lies down for a while, then the next day he’s up and at ’em again, ready to get on with his life and just relieved he wasn’t hurt worse in the accident.

He seems fine to everyone at home and at work — the only problem is, all of a sudden, he can’t seem to do the simplest things — like going to the store. Or completing a job his boss assigned to him. He keeps getting distracted by the simplest things, and when his wife sends him to the store to pick up milk and bread and his prescription refill, he ends up coming home with milk and eggs and shampoo, instead. In the process, he runs out of his daily dose of blood pressure medication, and his wife is upset, impatient and pissed off at him.

His wife tries to overlook his forgetfulness at first, but after a while, she starts to get pretty fed up with this guy. They quarrel and bicker, and he becomes nastier and nastier when they fight. He takes it out on his kids, too, yelling at them when they do things like turn the t.v. up too loud or come home late for dinner.  His wife’s patience gets shorter and shorter, and she feels like she has to double-check everything he does. He used to be so reliable, but now he’s just not trying… What’s wrong with him?

At work, things are getting tougher, too. Car Accident Guy’s boss has been noticing how he’s not delivering results when he promises he will. The reports are late. The analysis is incomplete. And he’s started making stupid mistakes he doesn’t even catch till someone brings them to his attention. Even when folks do show him how he screwed up, he’s contentious and argues about it, and his relationships with his co-workers seems caught in a downward spiral. His boss tries to talk to him, but he can’t seem to sit still in their meetings, and he keeps changing the subject or talking about other stuff that has nothing to do with what they’re there to discuss.

All the while,  Car Accident Guy has been missing his daily blood pressure dose, and his BP has been climbing — especially when he’s angry. He seems even more angry than usual, in fact, and his wife finally prevails on him to see his doctor. When he goes to the doctor, his blood pressure is way out of control, and his doc becomes very upset with him for not taking his daily dose. The doc considers him non-compliant and lectures him, and Car Accident Guy takes issue with his tone and snaps back at him. The doc, who has had a long day and isn’t in the mood for this crap, puts him on notice that he’d better clean up his act, or else. Car Accident Guy is immediately sorry for the tone he took with the doctor, and he apologizes and promises to do better. Feeling self-conscious, he tries to listen to the doctor and get what the doc is saying, but he can’t seem to focus, and he loses the piece about needing to schedule a stress test in six weeks. He takes the new BP med prescription from his doctor and puts it in his shirt pocket — but he’s distracted by what the doc is saying to him, so he isn’t actually aware of which pocket he put the script in.

Done with the appointment, he sails out of the office, forgetting to make the appointment for the stress test, trying like crazy to recall — from memory — the exact content of the his visit, so he can be sure to get himself back on track.

When he gets home, his wife asks him how the appointment was, and he has trouble remembering. He tells her it was okay, but when she asks him what the doctor said, he can’t remember exactly, so he avoids her question. She senses he’s covering something, and she’s concerned that there’s something seriously wrong with him that he’s not telling her. She becomes anxious and starts to press him for details, which he cannot recall exactly. He snaps back at her, and the conversation escalates to yet another argument.

Exhausted and frustrated, he stomps off to bed, tosses his clothes in the hamper, and sleeps the rest of the day. While he’s sleeping, his wife does a load of laundry — including the shirt with the prescription in the front pocket.

When he wakes up, Car Accident Guy remembers he needs to take his BP meds, and he also remembers he needs to get his new prescription. He can’t remember where he put the script, exactly, but it must be in the clothes he was wearing at the doc’s office. Unfortunately, his shirt and pants have gone through the laundry, and the prescription is in soggy tatters in the washer. Furious with himself and furious with his wife, Car Accident Guy flies into a rage and verbally attacks his wife, his kids, anyone who is nearby. He drives off in the car, calling his doctor on his cell phone for a new script.

The doctor is noticeably irritated, and he thinks Car Accident Guy is not committed to taking care of himself. He writes another script and faxes it to the pharmacy, so his patient can pick it up. Car Accident Guy thanks the doctor and heads to the pharmacy, but on the way there, he’s distracted by a yard sale along the road. He pulls over and spends an hour and a bunch of money buying some pieces of furniture he doesn’t really need, but that look nice and are available for a good price.

He loads the furniture in his car and heads home. When he gets there, his wife is still angry with him, and she’s packing to go to her mother’s house with the kids. In the meantime, his anger has completely dissipated, and he doesn’t understand what she’s still angry about. He also can’t understand why she isn’t pleased with the bargains he found. She asks him where his prescription is.

“Prescription?” he asks…

That’s more or less a cause-and-effect narrative of what can happen, just from a couple “simple” problems like sleep disruption, distractability, and lower anger thresholds — all of which are common in TBI. Even MTBI (supposedly “mild”) can produce life-wrecking after-effects. Believe me. I’ve lived it. I know. Car Accident Guy’s story is not terribly different from my own, though my own circumstances are different — still, the types of problems mulitiple MTBIs have brought me are not that different from these.

It’s eerily easy to end up in a downward slide — in no small part due to sleep issues, which contribute to distractability, which contributes to frustration, which contributes to lowered anger flashpoints.

But in the same vein, being aware of the issues up front, makes it eerily easy to avoid situations like this.

Getting enough sleep is a start. Being mindful of your energy level is another. Keeping notes about what you need to do is yet another. And stopping to check in with yourself and double-check your work is yet another.

TBI, even mild traumatic brain injury, can totally screw up your life. The good news is, it doesn’t have to.

Narrowmindedness breeds disability

Permanent Vacation is a post everyone should read. It’s important. And it’s true. And since the chances of you getting through life without encountering at least one person who needs a little extra help are slim to none, you should read it, think about it, and let it guide your future thoughts and actions.

The issues around disability have been a regular part of my life for a long time. I’ve lived with disabled people, and I’ve worked with them.

Back in the day before I fell down the stairs in 2004 and my life almost completely fell apart, my day job was ensuring that large-scale websites were accessible for disabled folks and others with accessibility needs. Accessibility isn’t just about helping the blind use a website, or offering text-based alternatives to audio for hard-of-hearing or deaf folks. It’s also about making a website usable for folks who can’t use a mouse (too much mouse use can do that to you – trust me), or for folks who needed text to be larger than the 20-something-chosen miniscule stylized fonts that folks born after 1980 seem to be particularly fond of. It covers everything from how you navigate a website to how you use the information. There’s a lot to cover, and a lot of software engineers don’t want to bother with it.

I’m not sure why – it’s just basic human decency that drives the accessibility train.

At the time I was making websites more accessible, I had no idea that one day I would have my own disability to deal with — a twice-hidden disability, no less, which is as adept at hiding itself from me, as it is at hiding itself from others. Granted, one of the things that obscures TBI as a disability is the fundamental human aversion to brain problems. We don’t want to know about it, don’t want to think about it, don’t want to explore it, and we certainly don’t want to have to live our lives around a traumatic brain injury, concussion, whiplash, or whatever else you care to call the damage to what’s between your ears.

There’s a weirdly Darwinian streak we all seem to have within ourselves, when it comes to surviving head trauma. Either we heal, or we don’t. Either we’re okay, or we’re not. No middle ground. No gray areas. No good days or bad days. Just OK or NOT OK. And if you can’t make a go of living your life after you’re diagnosed and have treatment… or after having a few days/weeks/months off to get back on your feet… and if you can’t go back to functioning as normally afterwards as you did before, then you deserve to be shunted to the back of the room/bus/line, as someone who is “just not trying hard enough.”

Well, there’s head-injured, and then there’s stupid. These kinds of attitudes towards head-injured people are just plain stupid. And they do more to hinder the long-term well-being of TBI survivors, than any amount of brain trauma.

I could get incredibly riled over this — and believe me, I have in the past — but I’ve got a full day ahead of me, doing things I love to do, so I’m not going down that road. I will say, however, that if people could just get some basic facts about head injury and its effects… if people in general could just realize that an injury to the brain is indeed an injury and it never stops affecting the person who was hurt… if people could just step back and take a little bit more time and stop being so haughty and egotistical in their attitudes toward disabled and otherwise challenged folks, the world would literally be a better place.

See, here’s the thing… A serious, enduring injury (like TBI) is not the sort of thing you can heal all on your own. It’s not like a broken leg. You can’t put a cast on it that people can see and sign — and help you with, when you’re approaching revolving doors. The brain (especially) has a way all its own, and it’s a mystery to even the most accomplished experts, how it heals — and why. And while the brain may restore itself to some extent, the full-spectrum impact of a TBI is not the sort of thing that can be healed only by the physical knitting together of the severed connections — which can actually never be restored to their pre-injury state… Once the damage is done, it’s done (from what the experts say).

The full-spectrum impact of a TBI can touch every aspect of your life, from your sleep/wake cycles, to your tolerance of heat and cold, to your ability to understand what people are saying to you, to your tolerance for frustration. It can make you jumpy and irritable and verbally abusive, and it can cause you to say and do things you would never want to do, by reducing your brain’s ability to inhibit unwanted words and action.

And what’s more, the changes don’t just affect the injured party — they affect everyone that person comes in contact with, either directly or indirectly. Even if you manage to present as perfectly normal, even if you manage to keep your act together on the surface, if you’ve got TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

Here’s how you can get into trouble, thanks to a TBI:

  • TBIs have a nasty way of slowing down your thought processing speed.
  • Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
  • Increased distractability can lead to “careless mistakes”.
  • These can lead to arguments with others.
  • Arguments can escalate if your flashpoint threshold is low.
  • A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.

Now, if the people you’re dealing with have no idea that you’re having trouble sleeping, and you take a little while longer to process what’s happening, and they don’t have a clue how quickly your temper escalates (through no intention of your own, by the way), that just compounds the problems. Everything is complicated by impatient people who are in a hurry to get stuff done, without being mindful of the one they’re dealing with. Nothing is easy, when someone does stupid stuff to provoke you, or doesn’t cut you any slack. A hidden disability has a nasty way of getting worse, when you have to deal with someone who has no compassion and no patience for others who are just operating at a different speed than them… and who say and do unkind and hurtful things, just because they can.

Truly, it doesn’t have to take much to help someone with a disability like TBI get through the day. All it takes is some understanding and humility and respect. If you know full well that everybody has issues, that everybody has an impairment of some kind (large or small), and you understand that people-helping-people is a great way to not only get the job done, but also humanize your interactions, then the abilities of both parties are enhanced, countless issues can be avoided on the spot.

The injured person standing at the counter gets an extra few minutes to figure out what they want to do, and the person waiting on them gets an extra few minutes to catch their breath in the midst of a busy day. It’s not a bad thing.

But if the people you’re dealing with don’t have patience and compassion and aren’t willing to cut you a break, they create havoc for both you and them. The lack of simple, fundamental human decency, and a close-minded judgment of those who are different in some way, does far more damage in the long run, than the actual injury itself. Treating the disabled like they’re sub-human registers with us on a deep and fundamental level that wreaks havoc with our concentration, our focus, our available energy stores. Instead of solving a problem, like ordering from a menu or discussing a customer service issue, we’re plunged into a life-and-death battle for our basic human dignity. When people who are supposed to serve us refuse to treat us with respect, we walking wounded have to shift our attention away from the real problem we’re trying to solve, and shift over to the debasing challenge of convincing the person who’s supposed to help us solve the problem that we deserve to have the problem solved.

Which is a total friggin’ drain — one that should never have to happen.

Look… everyone has issues. Can we agree on that? Everyone has some problem of some kind. There’s no escaping that fact. Some of us have more obvious or more comprehensive injuries than others. But it’s really how we deal with our problems, and how we treat others who have different kinds of problems, that determines the debilitating effects of the injury.

If someone with a TBI has more problems when they’re rushed and pressured, then others can help them out by not putting all sorts of pressure on them, and not rushing them to do and say things they need to think through, first.

If someone with a TBI has more problems when they don’t get enough sleep, then their friends and family can help them by not demanding that they stay up late to watch a movie or television with them.

If someone with a TBI has hard of hearing, then others can help them by talking directly to them, not covering their mouths, and not making additional background noise while they’re talking.

But if everyone who thinks they’re okay is locked into the idea that if you don’t behave in such-and-such a way… or you don’t think or talk at such-and-such a speed… there’s something wrong with YOU, then the small problems become much larger. And the after-effects of injuries become even more debilitating.

Ultimately, I believe there is a solution to almost every problem out there. And with the right information and the right mindset… the right education and intention, issues that are sticky can be unstuck, and disability can be diminished. But if people who are supposed to help, flatly refuse to do so, then they themselves are helping to create and perpetuate true disability.

It’s not the injury that’s ultimately the problem. It’s ignorance and smallmindedness.