After a brain injury, it’s awfully easy to get stuck in every single moment.
Everything seems different. Everything is different. Your brain has changed, and you have to devote a whole lot of time to each and every moment, as though it were the only one in your life.
Focusing on the present with laser-like attention became my main form of brain injury rehab. After all, I had to retrain my brain to make sense of what was going on around it, and I had to acclimate (all over again) to certain things I had once taken for granted.
Like brushing my teeth and taking my shower and getting dressed in the proper order each morning.
Like washing dishes and cooking and fixing simple snacks without losing my temper.
Like going to bed at a decent hour and getting up to exercise each morning.
The things that I had once taken for granted… well, that familiarity was taken from me, when I fell in 2004. And everything fell apart.
We don’t realize till it’s gone, how much we really do take for granted, and how much we depended on the predictability to structure our lives. When it disappears, all hell breaks loose. Literally.
But now, after 10+ years of really drilling down on the details of every day, moment to moment, I seem to have turned a corner. And now I’m looking at the “long haul” — what’s ahead of me, not next week or next month, but 10 years down the line… 20… 30… and beyond. I wasn’t born yesterday, but I also come from a long-lived family, and I can realistically expect to live at least 20 years longer than my peers. Maybe even longer than that.
So, I’m shifting my attention away from immediate stuff and concentrating on the big picture. What else is out there? What else can I learn? How else can I grow? Where can I find interesting things to expand my mind and life?
It’s all out there, waiting for me. And it is for you, too.
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.
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 lotof 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.
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.
But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.
So, I help out.
I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.
And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.
But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.
I slow things down, too. The fatigue is just crushing, at times, and when I push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.
On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.
I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.
We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.
Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.
On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.
And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.
But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.
And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.
It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.
It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.
This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.
It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that inTBI S.O.S. –Self Matters To Others. Who people know us to be, is also a big part of who they understand themselvesto be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.
Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.
I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.
As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.
Sometimes the wheels come off. And you just have to figure out how to deal.
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.
I have been so preoccupied this week with the work changes and catching up with old friends whom I haven’t seen in over a year, that I have not directed much energy towards noticing this season.
I’ve been tired — with that kind of cognitive and physical fatigue that is particular to brain injuries. My head has been looking for ways to make sense of it all… past, present, future… and that’s been taking up a lot of my time and attention.
It’s a double-whammy. On the one hand, opportunities like I’ve had in the past weeks are rare — having three days of solitude to clean out my garage and basement… having friends from overseas come to visit… being part of the beginnings of a corporate merger… These are over and above the usual speed bumps and wrinkles that populate my days and weeks. These are different, and they demand a special kind of attention — the sort of attention I actually try to avoid: drama, excitement, speculation, intense work for 12-14 hours straight, without much of a break.
But because of their nature, I have to just go with it. Get into it. Be a part of it. Allow myself to be swept along in the current – like a proverbial kayaker who gets dumped from their craft in the rapids — as you get washed along in the current, keep your head above water, keep looking forward, and keep your ass up and out of the way of rocks.
The main thing is to keep your head up. Don’t drown. Keep looking forward.
One thing you learn from TBI, is that when it comes to activities, you have to pick and choose. I suppose it’s true of anyone who expends a lot of energy in their activities… or who is very effective in what they do. You mustn’t squander your energy on things that don’t matter. But especially with TBI, you have to be extra careful.There is literally only so much you can do, and if you try to do it all, you end up wiping out your reserve of extra energy — and then you have to spend even more time building back those reserves.
Because lack of energy and fatigue just make everything worse. It siphons off your cognitive abilities, it depletes your stores of happiness and joy, and everything can feel like a slog.
Even the good stuff, the fun stuff, the stuff you know you should be grateful for and happy about.
For me, that’s probably the most depleting thing — knowing that I should be happy about things, knowing I should be pleased and excited and uplifted… but just not having the energy for it. Even energy spent on good things, is energy spent. And building it back is not a simple matter of sleeping in on the weekends. For every two days of extra energy I burn through, it takes two weeks to build it back. And if I don’t have two uninterrupted weeks (like this past month) and exciting things keep happening to me, well, then everything gets that much harder.
In what ways?
I get more distractable. I lose my focus and find it next to impossible to concentrate on the tasks in front of me. I get caught up in all sorts of side activities — which seem so important at the time, but are not actually relevant to what I’m supposed to be working on.
I get more irritable. I can’t deal. I get cranky and snappy like an arthritic terrier. I get anxious and difficult to live with — with others, and with myself.
I get less attentive. My attention gets fuzzy, and I stop noticing details – like the leaves turning outside, or just how beautiful everything has suddenly become. Everything around me seems wrapped in hazy gauze, and my senses are not sharp. My sense are so busy just trying to attend to the basics, that the extra special things in life slip by me very easily.
Joy sorta kinda evaporates from my life. I know (intellectually) that I have a lot to be grateful for, and I know there is so much that I have to be glad about, but I just can’t find the joy. It’s nowhere to be found. And any attempt at reasoning with me to get me to find that joy… well, that just makes me feel stupid and ungrateful. My neuropsych tries to do this all the time, and the net result is that I feel stupid and short-sighted… rather than realizing that I’m simply tired, and letting it go at that.
It gets hard to sleep. The more tired I am, the harder it is to relax and sleep. When I should be getting to bed early, I end up getting on Facebook for 90 minutes — and completely blowing past my normal bedtime. And you guessed right — fatigue becomes a self-fulfilling prophecy where I get more and more tired and wired, as the days wear on. All of the above continue to escalate. It’s awful, and it’s very difficult to stop it.
I end up in a downward spiral. Unless I can get a bunch of good nights of sleep, I’m toast. Things get worse and worse, until I finally just Give Up. And it turns out, giving up is the best thing for me. Some nights, I go to sleep hoping I never wake up again — I am feeling that depleted and used-up. But the very act of completely abandoning hope actually makes it possible for me to rest. And in the morning, everything looks quite different than the night before. Usually, anyway. Some mornings, I’m still not convinced I want to keep going.
So, fatigue is a thing. It’s a very real thing. And if I don’t stay alert to it, and recognize when it’s getting to me, it can get the better of me, which is never good.
For today, I know I’m tired. I have a full day of things to do, but I can pace myself and take my time… really soak up this fine fall day, and enjoy what I come across, as best I can. Seasons change. It would be a shame to completely miss this one, because I’m distracted.
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I found something interesting relating to discharges from the armed services.
Compared with the total discharge population, discharge due to alcohol or drug abuse was more frequent in those with moderate TBI (odds ratio [OR], 5.4; 95% confidence interval [CI], 1.7–16.9) and those with mild TBI (OR, 2.6; 95% CI, 1.6–4.3) but not in those with severe TBI. Discharge due to behavior was no different in those with moderate or severe TBI and 1.8 times greater in those with mild TBI (95% CI, 1.4–2.2). Discharge due to criminal conviction was 2.7 times higher in those with mild TBI (95% CI, 1.9–3.9) and no different in those with moderate or severe TBI. Discharge due to medical disability was 7.5 times higher in those with mild TBI (95% CI, 6.0–9.3), 25.2 times higher in those with moderate TBI (95% CI, 16.2–39.2), and 40.4 times higher in those with severe TBI (95% CI, 30.0–54.4). The authors note, however, that because the risk of medical discharge is directly related to the severity of the injury, these individuals may be receiving medical discharges rather than other types of discharges (such as behavioral). A limitation of the study is that it did not take into account pre-existing factors, such as aggressive tendencies or preinjury alcohol abuse, which may have played a role in discharge outcome.
Seems that mild TBI was part of the picture in higher rates of discharge for alcohol/drug abuse, behavior, criminal conviction, as well as medical issues.
Initially, a traumatic brain injury may seem mild, but long-term, it’s much more than that.
I had a standoff with a friend last night about something that’s been really bugging me about their behavior, lately. Basically, it boils down to them not pulling their weight with a project we’re working on. I’m working my ass off, and all I hear from them is excuses, as they make even more demands on others to pull their weight for them.
This individual has been in and around my life for the last four years, and it hasn’t been easy dealing with them. I haven’t had to interact with them on a regular basis until lately, and now that I do, I see pretty clearly that they are just a friggin’ wreck. And for no good reason. Here’s someone who has has their share of difficulties in life, like so many of us. But where some folks rise to the occasion and take on what’s in front of them and actually do something about what they’re facing, this individual is intent on making everyone else responsible for their situation — it’s always someone else’s fault, and they refuse to take responsibility for anything.
Because their life has been so hard.
Cue the violins…
Anyway, we had a pretty heated discussion last night, when I was trying to figure out what the hell they were up to, and also let them know that their recent spate of bailing on important work was not acceptable. We went a few rounds of some pretty intense back-and-forth, and the whole thing left me feeling stupid for even opening up the conversation with them. Now I’m “hungover” from the exchange, and frankly I never want to see them again in my life. Unfortunately, they’re a business associate and close friend of my spouse, so I’m probably going to have to interact with them at some point. Jesus. We’re all supposed to get together on New Year’s Day.
No thanks.
This morning, I was up at 4:30 a.m., still revved over the experience, and just wanting to disappear. Just check out. Say adios amigo to everyone and everything, and invite the lot of my spouse’s friends and business associates to go pound sand. So, I went for a walk down the road under the waning moonlight, with the world all lit up around me. It was pretty amazing, actually, except for the hungover feeling that had my head spinning and left me feeling like shite.
I really friggin’ detest those people. They’re freeloaders and posers who are just this far from getting busted for what they do. Meanwhile, I’m keeping my nose clean, living as honestly as I can, and taking what life sends my way with a grain of salt — and a whole lot of hard work. Then along come these losers who offer nothing, but take plenty.
They say golf is a “good walk ruined”, but my walk this morning came in as a close second. But after an hour and a half of walking and talking it out, I got my head back on pretty straight, and now I can get some things done.
Time for me to get going on the things that I want to do. Keep my head down and just work. Just take care of the things I need to do, and steer well clear of them. Just occupy myself, keep myself busy, and not give them any more time or energy or thought.
Seriously. I’ve got plenty else on my plate already, without these losers dragging me down.
Things at work are pretty intense. They are having another re-org and I’m trying to negotiate my next steps for my job. There’s a lot we don’t know yet — and won’t for another couple of weeks, and rumors are flying left and right. Whatever. Again, I just need to keep occupied, keep my head down, and leave everyone else to their own devices.
I guess the thing is, the more I heal up from all my traumatic brain injuries, and get my life in order, the more I realize just how different I am from the people I’ve been around for so many years. I used to think I was one of them — slacking… aimless… now and then trying to pull a fast one to get over on someone or something, because I felt like life was stacked against me, and that was the only way I had to get ahead.
At the same time, though, I’ve always been a hard worker, conscientious, and dedicated. So, I haven’t reallybeen like those folks on the margins. Not really. I just thought I was, because my head was so turned around and I didn’t understand the true nature of my issues — or how to address them.
Now I do know. And now I’m doing something about it. I guess it’s a testament to how far I’ve come, that those people’s behavior and activity bothers me. It would probably be more of a problem, if it didn’t bother me.
Anyway, these situations keep coming up, where I cannot tolerate those kinds of people anymore. We have it out, and I cut them loose. They’re basically dead to me, and that’s that.
The only problem is, my spouse is still involved with them. And there we have it.
Brain injury is a funny thing — not funny as in “Ha-ha-ha”, but funny as in “How weird – I didn’t expect that to happen at all”.
One day, I’m fine, feeling good, and not sure how or why I ever had issues before at all.
And a few days later, I’m teetering on the edge of complete nervous breakdown, trying to talk myself back from that edge with what I hope is a calm and soothing demeanor.
It’s really weird, how things just suddenly become HUGE ENORMOUS PROBLEMS, for no apparent reason. Well, actually there are very good reasons, and when I track them over time, I can usually see how they happened. The thing is, leading up to those HUGE ENORMOUS PROBLEMS, I’m feeling good, I’m feeling fine, and things seem like they’re going along at a pretty good clip.
And all seems like it’s well. For all time. And I forget that it’s ever been any other way.
Or that it could possibly become any other way, without an instant’s notice.
But it can get ugly fairly quickly, and when I’m least expecting it. I’m not expecting it, because my attention is focused on other things besides my frame of mind and my stress levels. I’m caught up in something “important” — and it often is, despite my diminutive quotation marks — and I have a lot on the line, and I feel like so much is riding on me doing such-and-such in a certain specific way… I’m caught up.
And that’s when I get caught out. Pants down. Short and curlies waving in the breeze. And I have to stop the madness, back up, and start to put things back together again.
It doesn’t much matter whether all the excitement I’m dealing with is good or bad — I get tired and my system gets stressed in either circumstance. In fact, if anything, good things bode worse for me, because I get socaught up and so consumed by what I’m doing, and the energy is high, and I’m getting more and more tired but I don’t even notice it, because there’s so much good happening around me. And I don’t want it to stop. So, I keep going, keep pushing myself, keep stressing my body with a lot of adrenaline, but not always a lot of good food and water and rest.
When unfortunate things are happening with me, it can actually be less stressful overall, because I’m aware that I need to actively manage my stress levels, eat right, get enough rest, etc. Because there are “bad things” happening, and I need to be up to the task at hand. So, when things are rough, I’m actually less stressed overall. Here, let me show you:
The good, the bad, and the results – the higher a rating is, the better it is. The lower it is on the chart, the worse the situation is.
Click the image above, and you can see the relative difference between sleep deprivation, anger, anxiety, and excitement – and you can see that my “AMF” (or “Active Management Factor”, which is the rating I give myself for how much attention I am paying to my situation) is actually a bit higher when things are bad – which translates into less anger, less anxiety, and less sleep deprivation. And more excitement. The less well I manage myself when things are going crazy around me — even if it’s a good crazy — the less enthusiasm I have over time, as well, so it’s an all-round whammy, when I don’t pay enough attention to myself and my state.
When things are rough, then I tend to pay closer attention, because I know bad things can happen. But when things are going well for me, I tend to not actively manage my situation, and then I lose out on things like sleep and good food and also excitement. Keeping up the excitement when I’m dog-tired is even more work, even if the excitement initially drives my behavior that deprives me of sleep.
I can easily get complacent, when things are going well, but the net effect on my overall system is the same — I wear out.
That’s kind of where I am right now – I spent about 15 hours yesterday working on a project that I am very fond of, and which I believe has a lot of potential. But today I am wiped, and I’m feeling pretty antsy. I did a LOT of work yesterday that was good, and now today I am feeling the effects of it. So, I need to take away the arbitrary deadline(s) I set for myself, and stop stressing myself over this. There is a lot of stress going on at work, these days, and I can’t afford to let everything get the better of me… which is the line I’m treading right now.
I need to be smart about this… and also manage this situation actively. It doesn’t help me at all, if I push and push and push… and then end up with a crappy result. I need to give myself more time, not let the adrenaline and arbitrary deadlines drive me. I need to do a reality check and just get myself collected and sane again.
Because I have more to do today, than just work on my project. And my project is the one part of my life that I’m NOT driven by someone else’s insanely stupid deadline. So, I can cut myself a break. Give things some thought, and let reason drive my motivation, not some crazy lottery-style pipe dream that’s going to solve all my problems in one fell swoop. That’s no good. Let reason prevail.
And so I shall. Because it’s a beautiful day. And I want to keep it that way.
After a brain injury, it’s awfully easy to get stuck in every single moment.
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.
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.
But because of their nature, I have to just go with it. Get into it. Be a part of it. Allow myself to be swept along in the current – like a proverbial kayaker who gets dumped from their craft in the rapids — as you get washed along in the current, keep your head above water, keep looking forward, and keep your ass up and out of the way of rocks.
I get more distractable. I lose my focus and find it next to impossible to concentrate on the tasks in front of me. I get caught up in all sorts of side activities — which seem so important at the time, but are not actually relevant to what I’m supposed to be working on.
I’ve been reading 
Brain injury is a funny thing — not funny as in “Ha-ha-ha”, but funny as in “How weird – I didn’t expect that to happen at all”.
Broken Brain - Brilliant Mind 