Three days of freedom. Absolute freedom.

Time to just chill with the reading list

I’m OFF this weekend. That is to say, I have an extra day off work, which I will value and use to the best of my ability:

  • I’ll read whatever I like, wandering the internet (especially the free text sites — the Internet Archive, and Project Gutenberg)
  • I’ll write whatever I like, typing up the handwritten notes and thoughts I’ve collected over the past week
  • I’ll sleep whenever I want, taking plenty of naps and resting up from the past week
  • I’ll eat whatever I want, whenever I want — and I’ll fast, too. For the record, eating whatever I want means I’ll make healthy choices of the foods I have in my refrigerator and cupboards. At work they have a good salad bar, but that’s about all I can really eat in their establishment. Everything else is “standard fare” that doesn’t do me (or the other overweight people around me) much good.
  • I’ll exercise however I want. I had extra time this morning to lift heavier weights and get my blood pumping. It feels really good, right now, after that workout. And I know I’m on the right path.

The great thing about having an extra day off — especially with it being the holiday — is that all my noisy neighbors are gone. They’ve all gone off to their families’ lake or beach cottages to gather with their own friends and family. That means the neighborhood is

.  .  .  q   u   i   e   t  .  .  .

Deliciously, restoratively quiet.

There isn’t all sorts of random racket from my over-achieving Type-A uber-adult peers who can’t seem to leave the power tools alone on the weekends. There isn’t all sorts of activity, with cars and pickups and minivans pulling in and out of their driveways. And there isn’t a lot of yelling and screaming and banging and clunking coming from kids who are just doing what kids do, and have every right to do it… but who drive me nuts with all their noisy activity.

It’s good for everyone. Everybody else gets to do what they want to do, and I get to do what I need to do — rest, relax, take plenty of time to unwind and let my mind off its leash… And nobody has to be held back or put down by what anyone else is doing.

That’s all I really want — the ability to be free to be myself and pursue my own interests without having to waste time on interacting with other people who seem mainly interested in proving what fine citizens they are. I don’t need to prove that. Before I fell and hit my head in 2004, I needed to do that more than anything. I was in competition with the rest of the world to show that I was worth something, that I could do anything I set my mind to, that I was worth noticing and taking seriously.

After I fell — and my world fell apart — I learned the hard way, how important it is to not let that drive me. Now my life and my priorities are very, very different.

One thing about TBI, is that it teaches you to stand on your own, regardless of what others think. It teaches you to stand up for yourself and not take things for granted. It teaches you to keep a level head and just be who you are and how you are, regardless.  And it teaches you to value the simple things in life — a quiet long weekend, when the neighbors are all gone, the area is quiet, and you don’t have a million people clamoring for your attention and energy.

Now… what shall I look up on line…?

Back from my 2-day reboot

Ahhhh… that’s more like it.

I just got up from a 2-hour Sunday afternoon nap, feeling like I’ve gotten the reset I’ve been needing.

My parents came to visit over the weekend, and we three really good days together. I took Friday off, and we hung out, roamed around my area, spent some time on Saturday with friends they’ve never met, who are more like extended family to my spouse and me, and made and ate good food.

I tend to really dread their visits, because there tends to be a lot of tension with my spouse, who doesn’t see eye to eye with them, politically or socially. This time there was some tension, but I spent a lot of time alone with my folks, while my spouse slept or did other things, so we didn’t have too much overlap.

And the times when there was tension, we managed to diffuse it pretty well.

Overall, I handled things pretty well. Both my spouse and my parents are very high maintenance, so I have to actively manage their activities. I have to manage my spouse, keep them relatively calm and not panicked, jump in and help them with different physical activities, and make sure they feel like they’re involved. And I have to manage my parents, because they have a tendency to pick up tools and start to cut and trim and “fix” things that don’t actually need fixing, which leaves more work for me to do later.

In the past, we’ve had a non-functioning bathroom faucet for several months, because my father decided to fix the drip without having a seat wrench.

Took me a few months to get the seat wrench — I kept forgetting to look for one — and then took me a little while to figure out how to properly use it and fix what my father broke. I felt pretty stupid wrangling with that simple tool, but there it is. What can I say? I’d never used a seat wrench before, let alone looked for one at the local hardware store.

My mother has a green thumb, and she loves to prune and dig and rearrange plantings, which is great, so long as she’s supervised. Once, she “went rogue” with a clipper and pretty much denuded one of my spouse’s favorite plants — one they’d been given for their birthday.

So much for the prized birthday present. That was a sore spot for months, because the plant in question was a centerpiece in our home and became a constant reminder of the havoc my mother can wreak, if left unattended with a clipping implement.

This time, I was “riding herd” on all three of them — parents and spouse — because my parents are starting to slip a little, mentally and physically, and my spouse has been increasingly unreasonable, hyper-sensitive and aggressive… and I didn’t feel like dealing with yet another Clash of the Titans, like we’ve had in prior years. In years gone by, they’ve practically come to blows.

And that blows.

But this time, we kept peace pretty well, and we left things on an up note, when all was said and done. My dad got to fix something that needed fixing. My mom got to plant some perennials we’ve been meaning to plant, and my spouse got to sleep almost as much as they wanted to, as well as spend some valuable time with our friends on Saturday.

Coming off the weekend, I’m feeling pretty good about the whole experience. My parents are utterly exhausting — they are go-go-go, non-stop, all the time. They’re like sharks. They never stop moving, and they can never sit still for longer than an hour. An hour is long for them. In the past, I’ve completely melted down with them, because of the constant activity, the constant movement, the frantic pace they keep up. It’s generally too much for me, and it sets off all my issues — irritability, light sensitivity, noise sensitivity, sensitivity to touch, distractability, fatigue, anxiety… you name it, they set it off.

But this time I did well with them. I kept up. And when I felt like I was starting to wear thin, I stepped away for a little bit. I went to bed early. I took breaks from them all, now and then, and I was pretty good about watching what I was eating. I ate more than I should have, that’s for sure, but it was all healthy food, so that’s something.

Yes, that’s something.

At the end of it all, I’m feeling like I did a good job of handling myself and the challenges of the past three days. I had a lot of trepidation and anxiety about how I would handle things, because in the past things have been very tense, there have been a lot of fights and tension, and for days afterwards, my spouse would go on and on about the things that my parents did and said “to” them.

But we’re all slowing down, and none of us has the old intense edge we used to. My parents have pretty much “gotten” that they don’t have the answers to everything, and now their priority is on enjoying the time they have with the people they love. Their friends and peers are getting sick and dying. Members of our family are going through very hard times. And it’s like they finally got their heads screwed on straight with their priorities in life.

That’s a relief.

And my spouse has lost a lot of their hell-bent momentum, since they got really sick about seven years ago. They’ve also been declining, cognitively, so they’re less able to kick ass and take names like before.

Basically, everyone’s decline is working in my favor. I hate to say it, but it is.

And now, as I look back on the non-stop action of the past 2-1/2 days, I feel a great sense of relief and relaxation that my parents have returned home, and I can get back to my regular life.

Of course, “regular life” means going back to work to deal with all the bullsh*t at the office, the politics, the jockeying, and all the stupid-ass competition between co-workers (who should really be collaborating, except that they don’t seem mentally capable of doing that). Well, that’s tomorrow.

Right here, right now, I’m getting my act together, figuring things out, and pretty much settling into what’s left of my weekend. It’s been a good couple of days, it’s reset my priorities again, reminded me where I come from and where I want to be heading in my life, and it’s good.

It’s all good.

 

 

 

 

TBI – Background music for all I do

So, life is treating me well, these days. I have so much going on, it’s crazy, but at the same time, I don’t. I have so much to do, and so much to accomplish. But at the same time, all this activity is only related to a handful of “primary purposes”  — my job, a side project, and my general health.

Each of these has a ton of details associated with them, and I have a tendency to get “lost in the weeds” — getting swamped by details, and getting down on myself, and losing time and energy to my head-case dramas. But then I take some time away, reset, and come back at things with renewed energy, and everything feels better. Not only that, but I’m functioning better, as well.

The thing I can’t lose sight of is the TBI issues that are the “background music” for my life. Much as I would like to forget about it, the problems that come up because of fatigue, confusion, losing sight of the big picture, and getting distracted by a hundred different passing things, are all things I have to keep in mind and actively manage. It does me no good to push and push and push for weeks on end, then crash at a critical point and lose ground. I need to move forward steadily, giving myself plenty of intervals to rest and reset.

I look around me at all the people who seem to be able to go and go and go without tiring, and I feel like I’ve been left behind. I have to spend so much time recovering from my days and weeks, that when everyone else is out and about, connecting and networking and “making the scene,” I am at home, keeping under the radar and out of sight, with limited exposure to anything but dinner, my spouse, and a handful of pre-recorded television shows.

I do work a lot, and some nights I’ll work late. But that is a rare occurrence. And I usually pay for it, for weeks after. I’m still paying for a couple of late nights I pulled last week. The fatigue doesn’t hit me right away. It usually takes a week to get to me. But then it hits me hard, and I cannot make it through the day without a couple of naps.

Crazy. And crazy-making. How I would love to be able to push through like everyone else around me, and keep up that wild pace.

Then again, I look at the people who are keeping up that crazy pace, and I have to ask if their lives are really that much better than mine. Sure, some of them are wildly rich and successful, but are they really happy and do they actually feel connected with what they are doing? I’m not sure they are. If they are, then that’s great and I’m happy for them. But I have to wonder if they’re satisfied with what they’ve got. I wonder if it’s enough.

I don’t want to get into a “sour grapes” mindset here. People have the lives they have. They have the lives they make. I have found what works for me, and what doesn’t. Comparing myself to others who seem to have more, doesn’t help me. It just holds me back and makes me feel badly about what I have. It also makes me question my own direction, which is not helpful.

I need to stay steady with my own direction, and always remember the context I am working in — susceptible to fatigue — which leads to light- and touch- and noise-sensitivities — which leads to even distractability — which leads to irritability and flurries of unproductive energy — which drains me — which leads to me feeling like crap and having a bad attitude — which adds to my stress and fatigue — which makes me want to drop everything and toss it aside and go back to something easier and less stressful.

I’ve been through that cycle countless times in my life — countless. It’s the hallmark of my existence, really, leading me to end up nearly 50 years of age without anything near the level of accomplishment I could have, feeling like I’m so far behind others my own age (and younger). If nothing else, it sharpens my resolve to pick myself up and get back in the game, whenever I stumble or fall. That regret, that embarrassment… it’s great impetus to really do something useful with my life.

Most of all, it’s great impetus to actively manage my issues with fatigue and all my sensory issues. It’s great impetus to keep eating right and getting enough good sleep, to actively manage my issues and keep myself honest through it all.

I spent the other day pretty much like a zombie. Dead-tired and zoned-out and not good for much… just reading the news and walking around the office and avoiding answering my emails before and after work. A lot of good that’s doing me and my plans. I took some naps, and I quit eating junk. I’m getting better now. And I know I can do even better than that.

So, I am. It’s a new day. I have a weekend ahead of me when I can really kick it with one of my projects. Things are happening that are just fantastic, and I need to remember that.

It’s all looking up — and when I keep my head on straight and manage and stay honest and true, good things get even better.

Onward.

 

Beyond ye olde comfort zone

So, yesterday was interesting. I ended up not having to help a friend with the event they were dj’ing, but I did have to dog-sit for one of their buddies. And it turned out okay, actually. I got a few hours of my life back, and I also got to hang out with a pretty cool dog. I went for a couple of walks throughout the evening, and I even got 4-5 hours of good solid work done on this project.

The crazy thing is, I actually was able to start work on my project, once I got past the hangup about not being in my usual comfort zone, where I have hours and hours of uninterrupted time to work. I had this dog to take care of. I had to take it for a couple of walks (then wash off the dust and possible poison ivy each time we got back). I also had to make sure it wasn’t digging in the trash, which this dog loves to do. I was definitely not un-interrupted last night, and I had to keep an eye on things in ways that I usually don’t.

And yet, it didn’t stop me from making real progress. It was an added factor to deal with, but I dealt with it and it turned out fine.

I also slept like a rock last night — must have been all that walking, especially the midnight walk on an amazingly bright night. I think that “super moon” is happening this weekend, and outside at midnight, even with the overcast sky, there was a glow that lit things up like I haven’t seen in a long time.

I also haven’t been out walking at night in a long time. The last time I was actually outside walking around was several years ago, when the neighbor’s dog kept circling their perimeter going crazy crying and whining and barking like there was some wild beast out there. Turns out, there was — we have some large-ish, potentially dangerous predators in the woods of this area, and one of those creatures had been wandering into our neck o’ things, coming after the neighbors’ chickens. After the neighbors got rid of their chickens, they went away, but for a while it was a little dicey going out at night. I found out the easy way — shone my flashlight into a clearing in the woods, and saw two bright eyes looking back at me, more than a foot above the ground.

Definitely not a possum. I backed away slowly and went back inside. We haven’t heard tell of any of these creatures around, lately, but for some reason, I just stopped going out for night-time walks.

Last night was different, though. The dog had to be walked. He’d been drinking water all evening, and nature called. Plus, he was all rested from sleeping for hours, so he needed to be worn out so I could get some sleep. Beautiful walk on a beautiful night, and not terribly much traffic. Anyway, you can see people coming, so you just step off to the side, signal you’re there with your flashlight, and then move along when they’ve passed. In some ways, it’s actually safer than the daytime, when you can’t always see them coming.

Oddly, the mosquitoes didn’t make me crazy. Normally, they do, but I was so relaxed yesterday evening, it was crazy. Just so relaxed and feeling great — even though I was short on time, and my hours of working on the project ultimately turned out to be a bust because I had gone down a wrong path of thinking, and I’d persisted in this wrong path for hours. The only thing I really achieved last night, was figuring out what NOT to do. But in the end, that’s fine, because I needed to figure that out, anyway. Better to make the mistakes now, than later. I don’t have a lot of time later.

One of the things I was figuring out last night is a program I need to use to complete this project. I have been terribly resistant to figuring it out and learning the system, for some reason. I’m blocked, and I don’t know why. That little voice in my head that tells me, “You can’t” has been working overtime — in every single aspect of this learning task. It tells me:

  • I can’t find the time to work on this.
  • I can’t figure out how to work all the features.
  • I can’t find all the different pieces I need to put together.
  • I can’t learn the advanced functionality.
  • I won’t be able to change the things I need to change.
  • I can’t come up with a decent end-product.
  • I can’t hold my own, and I will be treated like a fool and an idiot when people see the product of my hard work.

Yes, this voice has been very busy — like so many mosquitoes buzzing around my head, distracting me and annoying me and stinging me.

Last night, though, I finally buckled down and dove into the starting parts of learning this process, and once I got going, I wasn’t bothered by that voice and all its little BS messages that are designed to just get me to stop what I’m doing and take a break and give myself a hiatus from… living my life.

The mechanics of this are fascinating. This voice-thing seems to get “triggered” by a biochemical state — a combination of excitement and anxiety and uncertainty, which my mind apparently interprets as DANGER – RUN AWAY!!! When that particular mix of emotions ramps up, my mind seems to shut off and immediately starts looking for the nearest escape route. It’s like my mind thinks I’m in a fighter jet that’s headed right for the side of a mountain, and it hits the eject button, getting me out of “harm’s” way.

The only thing is, I’m not actually in any danger. There is no threat — either immediate or distant. It’s just a feeling I have that comes from the circumstances around me, that my mind decides means something that is simply not true.

My neuropsych loves to tell me that it’s a psychological thing, being connected to how I think about things and what I decide things mean. Personally, I think there’s something to that — and yet the whole process happens way before any psychology has a chance to engage. It’s a physiological thing to me, mainly, which hijacks my abilities to reason and see clearly. My mind doesn’t even have time to interpret what’s going on, but my body jumps into action immediatamente. No time to think – just react. Get the hell out! Go! – Go! – Go!

So, what’s making a different to me in this? What’s helping me get past it?

Well, first, really practicing being cool is helping. Just staying impassive in situations that test me, watching what is happening, and really working at keeping my cool — no matter what.  I decide how I want to be in situations that test me, and I treat them like tests… like training… to help me learn to be cool. It doesn’t always work — like with that meltdown a couple of days ago — but when I am in my right mind, it can work.

Stopping the escalation is an important part for me — it’s critical, really. Taking a break and allowing all the biochemical drama to subside, is such an important step with me. It gives me back control over my life and my experiences in life, and it lets me just be myself, instead of a collection of mindless reactions to what’s happening around me. When I escalate just because I’m all fired up, I stop being myself. I start being a reaction. I don’t want to be a biochemical concoction. I want to be a human being. I want to be me.

Of course, until I realized that I could actually chill out the process and stop the madness, that was well nigh impossible. But realizing that I can do this — that I can stop the escalation and let the biochemistry settle down before it bursts into flames, has made all the difference in the world. It’s been revolutionary, really. It’s like I’ve turned this page, and nothing can get to me — provided I am rested and am paying attention to what’s happening around me.

And when it comes to paying attention, one of the things that has helped me a whole lot, is something that wouldn’t seem that big of a deal — paying attention to my breath and relaxing. Relaxing cuts down on my stress levels, which takes the edge off my sensitivities, which can be extremely distracting. In fact, I would have to say that my sensitivities to light and sound — which get much worse when I am stressed / tired / pressured — are a huge source of distraction to me. And they set up a feedback loop that’s a little like putting a microphone in front of a speaker — not good.

Stress makes me more sensitive. Sensitivities distract me and make it harder to attend to what’s going on . When I cannot attend as well, I cannot monitor my internal state as well, which often results in me not realizing that I’m getting more and more stressed, and I’m about to blow…

But when I can take the pressure off and just relax and settle into what’s happening in front of me, with the people who are with me, things get a lot better. And I get a lot better. Because I can pay attention to what’s going on with me, instead of the flurry of activity all around me that is distracting and pressuring and bothersome and so often ends up in a meltdown — whether it’s internal or external.

And when I can manage that, I can get beyond my former comfort zone – and have every zone be a comfort zone. This was unheard-of, just a few years ago. And I suffered for years and years as a result. But now things are turning around. And it’s good.

So, anyway, that’s the deal for today. I slept till 8:30 this morning. Unheard-of in recent history. Must be all that walking yesterday. Note to self: go for more walks today.

Finding “normal” again, after all the … TBI “stuff”

So much depends on our view point

Okay, I know that when it comes to recovering from traumatic brain injury, the concept of “new normal” is not my favorite. I have heard so much advice from well-meaning individuals to “accept your limitations” and “get used to things not being as good as they used to be”.

Please. I’m not saying anything more than that, other than that.

Please.

Even the concept of “normal” is not my favorite. I think especially when it’s defined by others, it can be a trap that’s almost impossible to get out of. So, let me define “normal” for these purposes as being a state of mind and body and spirit that is balanced and feels usual — a way of experiencing and being in the world that doesn’t freak you out and put you on edge and make you miserable or anxious… but is part of your regular everyday life. It doesn’t have to do with others’ definitions of how you should being, but rather it’s about how you know yourself to be — and accept yourself. “Normal” life can include stresses that are customary and expected in the course of your everyday life. It can also include an incredible sense of well-being, in spite of all obstacles or difficulties you must overcome.

That’s where I’m at today — it’s not a “new normal” for me. It’s a new take on the old “normal” that used to be part of my everyday world. It’s taken a lot of work and time and energy, but it’s happening for me.

I wish it could happen for more people. Too many individuals give up too quickly, too soon, in the face of seemingly “permanent” conditions — those supposedly “it is what it is” circumstances are anything but permanent. But life is impermanent by nature. Nothing stays the same. And the only reason things remain permanently “effed up”, is if we just stop trying to turn them around.

That’s what so many of us do after a hard loss — whether it be the loss of a loved one, a job, a home, a planned future, and yes, the “normal” life we had before TBI. We just give up. Or we decide that we’re not really cut out for a regular life anymore, because either we don’t deserve it, or we don’t think we can deal with it, or we can’t see our way through to the other side, or we simply run out of steam and get way too tired to deal with much of anything.

And then we adjust to our “new normal” and hope for the best. As though that will help anything.

To me, that kind of acceptance is murderous. It is the exact opposite of what we should be doing after TBI, or any other kind of hard loss. The brain is “plastic” — it adapts and changes based on our surroundings and what we demand of it, and it needs to be retrained. It needs a lot of rest and water and glucose (and I suspect that the main reason for my splitting headache this morning, is because I didn’t give it enough of any of those three things all day yesterday), but if it receives the right TLC, it can — and will — learn to do new things in new ways — or learn to do old things in new ways.

See, that’s the thing — with TBI your thinking can get very rigid and literal and stubborn, and your brain can start telling you that there is ONE WAY AND ONLY ONE WAY TO DO THINGS (and yes, it will tell you that in a very loud voice). The old ways were “right” and the new ways are “wrong”. The old ways were the “only” way, and the new ways will “never work”.

Silly. There is never only one way to do things. There is never only one right way to get from Point A to Point B. There are lots of different ways — we just need to take it upon ourselves to find those different ways, and train our brains to handle life in a slightly different way.

Of course, you tend to get tired, in the midst of all of this. And when you get tired, your brain tends to work less well. That’s a struggle I’ve had for years. However recently, I’ve discovered a way to mitigate the effect of fatigue. It’s not that I’m less tired — I’m pretty wiped out, right now. But I don’t get as bent out of shape over being tired, as I used to. I recognize it, I take it in stride, and I get on with my life anyway. I do what I can, when I can, and I don’t worry about the supposed disaster that may come on the heels of being wiped out and mentally out of it.

I just accept the fact that I’m dog-tired, and I deal with it. I live my life anyway. If I can catch up on my sleep, then great. If I can’t, I don’t worry about it. I factor in the fatigue in my daily life, and I make the necessary adjustments.  I can tell that things aren’t nearly as peachy as they used to be for me. I can tell when I’m a lot less sharp than when I’m rested. And I can really tell when fatigue is really chipping away at my patience, my self-control, my manners. But I don’t let it derail me like I used to. It’s not a tragedy anymore. It’s a pain in my ass that I just need to recognize and deal with, and do the best I can in spite of it all.

This is a monster change for me. The whole realm of physiological after-effects of TBI really threw me for a loop for a long time. I have been hung up on how much my cognitive state suffers from fatigue and stress and anxiety and physical pain. I guess it was pride, really — I don’t want to seem stupid or be the brunt of others’ jokes and ridicule, and when I’m tired and in pain and not doing well, I’ve not been able to handle myself well in the past, so I’ve ended up taking a lot of sh*t from people who didn’t know better. And so, when I would be over-tired, or in pain, or practically deaf from the ringing in my ears, or dealing with some other TBI-related problem, it would make me really anxious and upset… which made everything worse.

In the past months, however, I’ve let a lot of that go. Maybe I just let the whole pride thing go, because I realized it wasn’t worth it, and the only one who has really been keeping tabs has been me. I think that stretching my back and neck on a regular basis has been very good for me. When I crack my back or neck (and it doesn’t take much – I just need to bend or lean in different directions), I get this rush of really great energy and relief, like my brain is actually able to communicate with the rest of my body through my spine. And my head clears, I’m less foggy, and suddenly the colors are a lot brighter than they used to be.

Nice.

Also, I shifted my focus away from remediation of my issues (like trying to catch up on my sleep after the fact), to the Bigger Picture — just living my life the best I can, under all conditions, good or bad. I’ve gone from managing every single aspect of my day…. to letting it all just fly free… to learning how to pick and choose the things I’m going to concentrate on each day. I’ve trained myself pretty well to do the basics again. I can get myself out of bed, have my breakfast, and get ready for work without losing my temper or forgetting if I’ve washed my hair. I’ve figured out how to get myself to work without incidents from my light and noise sensitivities, and I’ve figured out how to structure my days so that I’m doing the things I care most about when I’m the freshest and most with-it.

Now that I’ve got that basic functionality down, I’ve been focusing on relaxing and getting myself in a good space… or, if I’m not in a good space, realizing it and training myself to just deal with it. I used to be pretty good at keeping it together under 85% of difficult conditions. Then, after my TBI in 2004, that slipped to about 15% of difficult conditions, and that’s when my life started to fall apart.

I would say now that I’m getting closer to that 85% I used to be at. I’d say I’m probably doing pretty well under about 75-80% of difficult conditions — I’m not yet performing at my peak, but I’m holding it together and keeping my sh*t together much better than in recent memory, and I’m not having hardly any of the meltdowns that I was having, only a few years ago.

Which is good. I had a bit of a blow-up, the other night when I grilled up some killer steaks, and my spouse decided to take a shower just when all the food was ready to be served. I ended up with a tough piece of meat, because they waited till the last minute to do something they could have done all day, and I lost it. I lost it even more when they acted like I had no reason or right to be upset. I had a long day at work. I was hungry. It was late. I just wanted to enjoy my steak. But no… Oh, never mind. What’s done is done. The thing I need to realize and remember is that sometimes I have every right to be upset, and sometimes I am going to get upset. It’s just that I can’t let it take over and run me the way it used to. I need to let it be about being upset — not being upset about being upset, which is what gets me. And after all is said and done, I definitely have to let it go. And see how I can possibly avoid that next time.

Management issues. Hm.

Well, speaking of management issues, I’ve got to get going and get into my day. I’ve been working on my “stress hardiness” training — consciously trying to toughen myself up and not be so sensitive to the ups and downs of the everyday. I’ve got to get tougher, that’s for sure. Not “ram tough” and all aggressive and over-the-top, but resilient and able to take a hit without collapsing into a heap. I need to get a thicker skin and do better about just dealing with stuff, instead of letting it take over my head and make me crazy. I used to be like that — as I said, 85% of the time. And I am getting better at it.

It’s all about conscious practice — training myself to deal. In some ways, I feel like when I was a kid, and I was learning to do all kinds of things, like handle myself in the adult world. That’s how it feels right now, and while it is kind of strange and deja-vu, it’s like I get a second chance to learn how to do all this stuff. The “first time around”, when I was dealing with TBI stuff and didn’t realize it, so much of what I learned was inaccurate or just plain wrong.

Now I get a “do-over” and I can get my act together in ways that I thought I was before, but actually wasn’t. I can take a new shot at things and lay another foundation for myself, starting from scratch in many ways. It sounds strange to me — I’m nearly 50 years old, and I feel like a 10-year-old kid. But in so many ways, all of us needs to reinvent ourself in one way or another over the course of our lives. Some of us have to do it many times over. So, it’s not so strange or unusual. It’s actually pretty normal — perhaps the most normal thing of all, when it comes to being human.

I think maybe this is what my neuropsych has been trying to explain to me for years, now — that it’s in the nature of human beings to change and grow over time. We don’t always have a say in the areas where we need to change and grow, but we do have a say in how much we accept and adapt to that need for change, and the energy and determination we bring to that change.

How we define “normal” is up to us — if we don’t do it ourselves, someone else’s “normal” can end up defining us.

Onward…

Getting used to it — again

For some reason, there’s a part of me that thinks I’ll be able to soldier through this TBI stuff and come out on the other side, issue-free.

Like I won’t have any more sensitivity to noise or light when I’m tired.

Like I won’t feel like going off the deep end, when I get overwhelmed and fee cornered.

Like I will finally feel rested and be able to live each day with an abundance of energy.

Like I will feel like my old self again.

Broken record me – it’s not happening.

But check this out – that doesn’t so much matter.

I mean, it does matter that I generally feel like crap on any given day, that I feel like I’ve been dragged behind a bus, at any given moment, and I feel like I’m going to just drop from exhaustion and overwhelm at the least expected times. That’s no friggin’ fun, for sure.

But the main thing is — these things don’t have to ruin my life. Sure, its unpleasant. Sure, it’s troubling. Sure, it’s a hassle to deal with. But just because it affects me, doesn’t mean it has to affect others, make them miserable too, and ruin my chances of being able to do something worthwhile in the world.

I can live and do the things I need to do, regardless of how shitty I feel.

And if I can’t get these issues to go away, I can at least keep them from ruining everyone’s day.

Just manage them. Deal with it. Handle ‘em.

And get on with it.

Onward.

Managing TBI symptoms all around

Lots to work with

So, I’m headed back out on a business trip again next week, which means it’s probably going to be pretty quiet here for the next 10 days or so. I may get a chance to check in while I’m traveling, but I’m guessing things are going to be busy, so I might not get to check in.

One thing that’s been happening, which I’ve talked about before, is that I’ve been discussing my testing results with my neuropsych, comparing how I am now to how I was before. Back in 2008, when I had my first test, I was in pretty rough shape. I was struggling with a pretty constant sense of overwhelm, I had a pervasive sense that there was something terribly wrong with me, and my mental health was all over the map. I was borderline disabled… and headed in that direction, due — I’m sure — at least partly to the fact that almost all of my friends and associates were living disability-centric lives. By that I mean, they either considered themselves too broken to do much with their lives, or they devoted their lives to comforting and counseling the broken.

But in either case, their focus was on disability, wounding, victimization, and struggle. And in most cases, their perceptions of themselves and others was very similar — they not only helped wounded, damaged people, but to at least some extent, they also considered themselves wounded and damaged.

Sigh…

Anyway, the one exception to that has been my neuropsych, who has never let me get away with settling into a victim mindset, and who has really reminded me on a regular basis of what I really think about life — that it throws us some pretty intense curve-balls sometimes, and sometimes it really roughs us up, but in the end we do have the means and the ability to turn things around for ourselves and no matter how bad things may seem on the surface, we have the capacity to move on and do better.

And that’s been my experience. Truly, it has. They have helped me and offered me encouragement and information all along the way. Granted, I’ve only seen them for an hour a week — and sometimes not even that often. But they really have been a help. Because they’ve been the one person in my life who has not been sucked into the abysmal void of mistaken beliefs telling you that you have to settle for less, which I see all around me, each and every day.

I have been getting better. A lot better. My numbers are remarkably improved over last time. And we haven’t even gotten to the purely cognitive stuff yet.

What has been getting notably better is my overall functionality and my self-perception. The old depressiveness and the overwhelm is down — way down. Anxiety levels, impulsive acting on anger, social discomfort and avoidance, negative emotions, and my general sense of maladjustment are all significantly reduced — often to normal levels.  It’s literally like a light has turned on in my life. It’s like I am a completely different person on paper, and my life has gotten one of those major renovation makeovers you see on HGTV.

And yet, what all has changed? Seriously — what has actually changed in my life?

I don’t have the blindingly intense, constant headaches I once did, and the seizure-like behavior has subsided. I don’t go into anxiety/panic attacks the way I used to, and the anger and sense of confusion has subsided. But other than that, a lot of things have objectively stayed the same. I still have chronic physical issues — the pain, light-sensitivity, noise-sensitivity, balance issues, vertigo, headaches, insomnia, sleep issues, and I still find myself flying off the handle over things that “shouldn’t” get to me. I still get confused over things, I still lose track of where I am and what I’m doing, and I still actually have a lot of the 84 concussion/TBI issues that can make your life really interesting.

So, what’s changed? Basically, a few things have made a world of difference.

First, I am aware of the issues. I know I have these issues, I know that when I am not sleeping well, it affects my thinking and my sensory sensitivities, which makes life more of a pain in my ass. It’s not all this big mystery for me anymore — I’ve spent a lot of time observing my life and seeing what sets me off and what works, and after several years of serious study, I have a pretty good working understanding of what impacts me, and how.

Second, I have stopped fighting the issues. Sh*t happens. That’s just a fact. Especially with TBI. Instead of battling against the things that just are and fighting their existence, I use my energy for simply noticing that – yes, again – the sh*t has happened, and I need to respond to it, instead of wringing my hands and crying poor-me and cursing life for dealing me a crappy hand.

Third, I actively manage the issues. From my observations, I can clearly see that one thing leads to another, and I can tell when I need more sleep, or I need to wear my sunglasses when I go out. I generally know when I’m in rough shape (which is more often than I’d like, but oh well…), and I can then anticipate things going a certain way. For example, when I am very tired, I get clumsy. When I’m clumsy, I drop things. When I drop things, they often make loud noises, which startle me and set me off. So, when those things happen on days when I am tired, rather than getting completely bent over them, I just deal and move on. I take a deep breath, pick up the fork I’ve dropped and get a clean one from the drawer, and I eat my food. If I’m dizzy, I hold onto the side of the counter when I’m leaning over, so I don’t fall. And if I’m sick on my stomach because of fatigue and dizziness, I just move more slowly and eat my food at a more leisurely pace. And I get on with my day.

It might not sound like much — it might even sound very common-sense to a lot of folks — but for me, this is huge. It means the difference between

  • starting out in a really shitty frame of mind, thinking I’m damaged and wrecked and whatnot, and not feeling up to much of anything… which often becomes a self-fulfilling prophecy… and
  • starting out on a note that shows me that I can manage my situation just fine. It’s not ideal, but I can manage. And that certainly helps.

You know, it’s funny — while we were going over my test results, my neuropsych was saying how my physical problems had been really reduced almost to non-existence. Au contraire. Sure, they don’t ruin my life like before, but they are still very much there. They’ve been there for as long as I can remember. I’m just doing a hell of a lot better job of managing them, of dealing with them, of working them into my daily life, than ever before.

Again, being aware of them and realizing how they fit into the overall constellation of my life, how they shade my existence and contribute to things like anxiety and overwhelm and difficulties with thinking and processing information on the spot, has made a huge change. It’s not that I have this identity as a disabled person who cannot do anything much with their life. I have an identity as a human being who can do a lot with what they have, despite the issues that come up on a regular basis. I manage my TBI issues all around, and while it’s not my favorite way to live at times, it still gives my life a unique and very hopeful feel.

It pretty much sucks that I have these issues, and that they show no signs of going away permanently. But at the same time, I usually know how to handle them, so even though they’re there, they don’t have to ruin — and run — my life. They’re just there. Background noise. Oh, well. If nothing else, they are an opportunity to learn.

So, the bottom line is that things aren’t perfect. When are they ever? But I can manage. I do manage. Personally, if something has to be wrong (and part of me think there’s always gotta be something), I’d rather have it be this, than something more terrible that is insurmountably soul-sucking. There are plenty of folks who struggle in pain they cannot identify or address, and I’m not one of them. Not anymore. I struggle, sure, but after years or work, now I can identify the real source of the pain, and I can sure as hell do something about it.

So yeah — onward.

SO good to be home, for good

It surely is. After traveling overseas in December, and then again in February, I have to say it is pretty awesome to be home for the foreseeable future. They may ask me to travel again in a few months, but I need to pace myself and make sure I don’t overdo it. ‘Cause man, I am wiped.

It’s funny — I didn’t have as much trouble with being tired, when I was over there. I was able to regulate my sleep and I felt pretty functional, overall. But coming back, my sleeping has been all screwed up, and I am having a hard time getting back on track. Add to that the drama at work around the re-org, and all the uncertainties and insecurities, and you end up with a lot of reasons NOT to come to work.

But hey, at least I got a promotion out of it — at least, I think that’s what happened. My title changed to something pretty respectable, which is good. It gives me something to work with, when it comes to politics. It also gets me out of the trenches, which is nice, and puts me on par with managers. Actually “Manager” is part of my new title, which is nice. And it gives me something to parlay into something even better, when I start talking to headhunters again.

In any case, it’s all a grand theater production, when you get down to it, so I can’t get to attached to much of anything. Things change daily, and it’s maddening, if you get your heart set on much of anything. Me? I’m just taking it as it comes and treating it like experience. Because in the end, that’s the only thing I really “own” — not my title, not my job, just my experience. And I can do with it whatever I choose.

It’s funny, while I was traveling, I discovered that there was an awful lot I did not notice, even though my colleague did. I didn’t see a lot of things that they called to my attention, while we were going back and forth to the office (our hotel was about a mile from the office, and we walked to work and back each day, which was good exercise). I was so focused on just making my way from Point A to Point B and beyond… so intent on not getting pulled in different directions… not getting run down by the local drivers… not losing my orientation and getting completely overwhelmed to the point where I’d shut down… that I didn’t see a lot of things that my colleague saw and commented on.

At first it bothered me a little bit. I didn’t want to be so affected by the noise and the lights and the cold and the heat. I didn’t want to have to focus so intently on what was in front of me, that I missed the things around me. I didn’t want to have a limited experience because of my hyper-sensitivities. But that’s how it was.

Then I got to thinking that being that focused was not a bad thing — it kept me from wandering in circles. And when you think about it, there’s no sense in experiencing everything all at once. Where’s the sense of discovery then? Where’s the adventure? It would all become too familiar too soon, too easy, too bland, if I took in everything right from the start.

The way I was, missing so much, the first few times, it left a lot for me to discover later, and I did — with a true sense of newness each time. Because it was new to me.

The other thing about being so focused, was that it blocked out a lot of things that could have been upsetting and could have thrown me off, on what was a very important trip… namely, that my father nearly died two days before I flew out, and they did a pretty significant medical procedure on him, and I still managed to “stay in the game” while maintaining good contact with him and my mother and the rest of my family in the hours leading up to my departure. All the focus kept me on track. My father is fine. He’s on the mend. So, I wasn’t being a “bad child” and neglectful, because I wasn’t thrown by his illness. And that’s a good feeling.

The other thing about the focus, though, is that I completely forgot about him being sick, much of the time I was there — and even when I talked with my neuropsych on Monday. You’d think that I’d remember that and discuss the situation, but I completely forgot about it. Jet lag… yeah. And such intent focus on what was in front of me, that I overlooked that important event. Completely forgot it had ever happened.

Whoever said “Happiness is good health and a bad memory,” was right.

And now I am exhausted. It’s time to go to bed. I am so done, it’s not even funny.

So, off I go.

Till later…

Ah, Groundhog Day…

I have a feeling I’ve been here before…

I’m not talking about the recent event when the behavior of a groundhog (or groundhogs, depending on your regional preference) determines our future. I’m talking about the movie,”Groundhog Day”  where Bill Murray’s character goes through the same day over and over and over again.

This is my life in a nutshell. I cycle through the same experiences / crap / joys / sorrows on a regular basis, each time without much active recollection of how it was before and what my experience was then. It applies to the good things, as well as the bad things, and my neuropsych is repeatedly surprised that I’m wrangling with the same issues that I was wrangling with, several weeks, months, or even years ago. Sometimes I have “new” experiences that are repeats of what I experienced only the day before, and I have to go through the whole learning process all over again.

One example I can think of was back in December, when I had that business trip overseas. Each day, I got up with this terrible, terrible dread — almost crippling anxiety over what was going to happen that day. It was awful, and I literally did not want to leave my room. I just wanted to stay behind closed doors, where I had no interaction with anyone, where I couldn’t possibly screw things up, and where I could move at my own pace and not adapt to anything new or different around me.

And each day, I literally forced myself to get dressed and go out into the world. Each day, I rediscovered that I was able to communicate, that I was capable of understanding what others were saying, even if I didn’t get every single word, and that the world outside was something to be explored and discovered, not dreaded and avoided.

Then the next day when I got up again, it was back to battling the crippling dread, the fear, the anxiety… the monumental effort of getting myself OUT the door… and the happy discovery that I could indeed handle myself well in the world beyond the hotel room. And at the end of each day, I was able to kick back and really enjoy myself in that space, just reveling — all over again — in the “discovery” that I was really going to be okay.

Now I have another business trip coming up that will take me overseas. This time I am going to a country where I do not speak the language. I have been studying a bit, which has been kind of funny — I found some audio files to learn from, but when I started to listen to them, it turned out to be all “Stop or I’ll shoot!” and “Put down your weapon!” and “How many armed men are there?” — apparently a law enforcement or military training course. At least I know how to say “Don’t shoot!” if I get into any trouble while I’m on my trip. You never know… there are some pretty rough neighborhoods where I’m going.

Anyway, the point I’m making is that for some reason, I seem to have just a terrible, terrible memory for things that have happened to me before. This is true of good things… and bad things. I seem to get myself into situations, over and over again, doing the same thing and expecting different results, and then I suffer and chafe when things don’t turn out like I think they’re going to.

Like trying to get out of the house to get to work… Time and time again, I get up thinking that I can just take a little time to check my email and/or do some little things around the house, and then I’ll be able to get to work on time. And time and time again, I get sidetracked on one thing or another… and I end up rushing and being later than I wanted to be. I make up the difference at the back end, of course, staying late — even later than I would have to, actually, because I start to warm up around 6 p.m., and it’s hard for me to take a break when I’m finally making good progress. Even so, even if I do make up the difference in the hours, the simple fact is that I do this over and over again, thinking that this time it will be different.

Insane? Well, according to some, it is. Whatever you call it, it gets frustrating, and I feel like a complete idiot.

I guess part of the equation of this apparent failure to learn, is the fact that I have to stay very present in the current moment, or I can really lose my bearings. I think this 100% here-and-now mindset has developed over years of having to navigate so many issues — light sensitivity, noise sensitivity, exhaustion, vertigo, nausea, pain of all kinds, headache, distractability, and more — but still needing to be functional. I think I just developed the habit of focusing so completely on the present so that I could function in that moment, that everything else — before and after — just disappears. Or it never has a chance to get set in my mind.

I think also the stress of daily living over the years has impaired my ability to learn. Just having to deal with all the sh*t of my issues and symptoms and the screw-ups and the adjustments and the confusions and distractions… it can get pretty stressful, and I’m sure it’s had some impact on my ability to learn.

Then again, in other areas I learn extremely well — like this language thing. I’m actually picking up a lot of good stuff, and I think I’ll be able to at least ask people for help and understand basic numbers and directions, and be able to thank people for their help, without too much struggle. Languages seem to come pretty naturally to me, and it surprises me how much sense they make to me after a relatively short period of time.

So, it’s not like I’m completely disabled with my learning. But experiential learning? There, again and again, I end up going through the same things, as though it were the first time ever.

Well, I can’t worry about it. If I approach it like it’s a grand adventure of constant discovery, and I treat each situation like a fun opportunity to have a “new” experience, it’s fine. It keeps me fresh, actually. It keeps me interested in my life. It’s never boring — that’s for sure. The worst thing I can do, is treat myself this means there’s something wrong with me, that it means I’m somehow damaged. If I don’t judge myself and I just accept that about myself — and come up with ways to work with/around my very limited memory… and I don’t get it in my head that this means I have early-onset dementia and I’m losing my mind…. I can work with this.

Hell, I’ve been working with it for as long as I can remember. I just “get lost” sometimes and I have to find my way out of the shadows and dead-ends… which I can do pretty well. I’ve had plenty of practice, you see.

Anyway, life goes on. I have a number of very interesting projects I am working on, and that’s keeping me interested and engaged in my life. I’m learning new things pretty well, and I feel good. I also got a lot of sleep yesterday afternoon, after I was done with my work. I worked from home, so I was able to just crawl into bed when I was done for the day. That was nice. I got about 7 hours of sleep last night, so that’s good, too. And I have all day today and all day tomorrow to kick back and take care of myself. Because I’m flying out in another week, and I need to be healthy and whole to make this trip.

So it goes. Part of me would like to have a better recollection of the things that I have experienced in the past, so that I don’t keep making the same mistakes, and I don’t keep pushing myself and wearing myself out. And I’m thinking about ways I could do that — maybe keep a log of what works for me in different situations, so I can draw on what has worked for me in the past… I had that kind of a log going, about 3 years ago, and it was working well for me. I think maybe I need to resurrect it, so I can continue to draw on my experiences and get my sh*t together better than I currently am. It’s an idea….

Anyway, the day is waiting, and I’ve got to get a move on. It’s always interesting and never boring… and I need to remind myself of how things have been in the past, as I work through my present and into my future.

I’ve been here before, I’m sure… now I need to figure out how to make the best of it.

 

TBI Recovery – like life on the high seas

Avast there…

I’ve heard it said that it takes about seven years of recovery for a person to start feeling “like themself” again after traumatic brain injury. That sounds about right to me. And now that I’ve been at it (actively) since 2007, I’m coming up on seven years — next year.

What a long, strange trip it’s been. From nearly losing everything, to sabotaging job after job, to watching my friends go away, to the relationship/marriage troubles and health issues, to slowly building myself back… it has been a trip. But it’s finally starting to feel like things are stabilizing for me.

When I say “things” I mean internal things. Not external things. Learning to live with TBI is like going to sea and learning to walk across the deck of a ship that’s rolling through all sorts of seas. Between the sensory issues, the focusing issues, the distraction problems, the mood swings, the irrational and literal and rigid thinking issues… if it’s not one thing, it’s another, and just getting used to the idea that this is just how things are, has been a battle in itself.

But that’s the deal. This is how things are. And there’s no sense in trying to tamp it all down and get things to chill, because no sooner does one wave pass, than another comes along.

Walking across the deck… yeah. That’s about the best metaphor I can think of. And it puts me in the mood to read some seafaring adventure stories – Captains Courageous, Treasure Island, Two Years Before The Mast… stories I remember from when I was younger, that I really loved and enjoyed. It kinda puts me in the mood to tie knots with heavy rope… :)

And that’s one thing that the seafaring metaphor does for me — it raises dealing with TBI issues from a hindrance and an inconvenience and a problem, to being just part of what I have to deal with on the “high seas” of life. Rather than turning the issues into problems and vexations, it turns my ability to deal with them into strengths and abilities that I didn’t have before. I’ve been deep sea fishing a few times, and I know from personal experience that “sea legs” don’t just happen overnight. It takes time. You have to learn to roll with it. I’ve never been out to sea long enough for this to “take” with me, but I would imagine that I could learn to do just about anything, given the opportunity and time.

And opportunity and time are just what I have, with regard to this stuff.

Today, I’m pretty dizzy and off-balance. I’m also having trouble keeping focused on one thing at a time. I’m working from home today, giving myself one more day to recoup before I go back into the office, and I still don’t have my full strength back. No surprises there – I was flat on my back for a week, and this won’t fix itself overnight. I just feel “off” today — spacey and tired and weakened. I’ll see how it goes, with getting my work done. And I’ll see how it goes, taking frequent breaks to just get my head settled again.

It’s not so very different from some days when I wake up after days and weeks of not getting enough sleep, and I have to work at my peak level. It’s not so very different from some days when I’m off balance and foggy for no reason that I can tell at all. It’s not so very different from dealing with the light and noise sensitivities, the headaches, the malaise… it’s not very different from that at all. And the emotional impact it has — the frustration, the short temper, the anger, the temper flashes from a very short fuse — that’s very similar, as well.

It’s all part of life on the high seas.

Of course, it’s easy for me to say all this, years on down the line after my latest concussion injury in 2004. At the very start, when nothing made sense and I was dealing with so many, many issues that I didn’t recognize and didn’t realize were a problem, the whole business made me sick. Literally. Like being out at sea for the first time, I was in a constant state of nausea and disequilibrium. I felt stupid, I felt like an idiot, and I felt so incredibly defective because I couldn’t regulate my emotions or my behavior. Everything was falling apart around me, and I didn’t know why. And not knowing made it even worse. Not knowing that I didn’t know…  that was the worst thing of all.

So many times, I look at the stats for this blog and I see people searching for “concussion now I’m dumb” or “does concussion make you stupid”. And I remember so well what it was like to feel so stupid, all of a sudden, and not know why nothing was working for me anymore. I seriously didn’t have a clue. I knew I had hit my head. I knew I had gotten hurt. But I had no idea the effects could be as big and impactful as they turned out to be. I thought it would all clear up in a matter of a few days.

How wrong I was.

What I didn’t realize was that each time my head bounced off those stairs, connections in my brain got twisted and frayed, possibly even severed. What I didn’t realize was that those connections had taken a lifetime to put in place, and now that they were disrupted, I was going to need to practice and practice and practice, rehearse and rehearse and rehearse… doing many of the things I used to do so easily, but now had to learn to do in a slightly different way. I almost wish that the differences had been obvious — things like walking and talking. But it was really the little things, like learning and managing emotions and remembering details, that had been disrupted. And those disruptions were even more upsetting, because they weren’t something that others could see or often even detect. The only one who could tell a real difference was me… And inside, I was a torn-up mess.

Of course, years on down the line, I can look back with some perspective and understand what was going on. But at the time, before I learned all I have in the past 6-7 years, I had no perspective. I had no information. And I was going nowhere fast. No, correction — I was going somewhere fast — down, down, down. I’m just lucky that I noticed something was wrong before I went over the edge and lost everything.

Not everyone is as fortunate as I am. Not everyone manages to get it as quickly as I did. A whole lot of people struggle in silence and tell themselves to just push on through… never getting the help they need. And that’s a terrible, awful waste. Not everyone understands that the high seas they are on, are going to always be there… that once you’re on the TBI / PCS  ship, you’re not getting off. You may have some calm days, you may have some serene days, but you’ll also have fog and shoals and doldrums… and the storms will always come up again — you can bank on that.

Not everyone is stuck for all time with post-concussive issues, and thank God for that. But for those of us who are, probably the best thing to do is just settle into the daily routine of sailing the high seas… get your sea legs… and get ready for adventure. You never know, you might just come across some treasure, along the way.

Ahoy….