Taking good care of myself

Sometimes….

Well, my spouse has done it again. We were supposed to leave for our vacation today around noon, and now they tell me that they’re not going to ready in time. They may — may — get up by 11:00.

That’s pretty disappointing. But then again, we are taking two cars, so I’m not going to be dragged down by their sluggishness. I have to come back home on Sunday night in order to be at the office from Monday through Wednesday. Wednesday night, I’ll head back out to the condo we’re renting, a few hours from home, and I’ll work remotely in the morning on Thursday and Friday, then take afternoons off.

I’m not sure why this “change in plans” surprises me so much. Maybe because my spouse is picking up another friend to join us for a few days, and that friend’s family is going out of their way to drop them off half-way. It seems incredibly unfair to everyone (except my spouse), that everyone’s schedules need to be re-jiggered to accommodate them. People have better things to do, than wait around to find out when they should leave the house.

If anything, it seems a bit sociopathic on my spouse’s part – like nothing matters except them and their own wishes and needs. Then again, they do have neurological issues, as well as some cognitive impairment and possible dementia, so they may not even realize that they’re being selfish. The whole neurological decline thing is a real drain, and if you forget what’s going on with them, it can be maddening. When they’re challenged, they get really angry right off the bat, possibly because they get scared at being caught unawares and not being able to think right away. They lash out and yell and threaten and cry and so forth. On the one hand, some people think they’re being manipulative, but I think it’s also a sign of cognitive decline. They really do get scared — and then they use their anger and blustering to stop me from saying or doing anything else… and that way they buy some time to catch up.

The thing is, once they get past their hemming and hawing and blow-harding, they re-orient themself to what’s happening, and then they calm down and can carry on a usual conversation.

The main thing for me is to not take things personally and get really upset when they start acting out. That happens all too often, and I forget that they’ve got cognitive issues. I take it personally and get so upset and bent out of shape — everything balloons in my mind, till the argument is not about what’s happening right in front of me, it’s about everything and anything that’s possibly related to my frustration at that point in time. My own brain goes haywire, too, so we feed off each other — and not in a good way.

Fortunately, I am getting better about checking in with myself and telling if I’m starting to get too wound up. Then I can back off — just walk away and cool off, and give us both a chance to simmer down. It’s just both our brains going haywire, and we both get scared. And we lash out. It gets to be a little much, to tell the truth, and some days I just despair about that downward cycle. But if I can step away and have some time to myself and get enough rest, that helps.

Taking care of myself really needs to be my top priority, in dealing with my spouse. When I get tired, my brain doesn’t work well, and of the two of us, I’ve always been the more functional — by a lot. I’ve been their caregiver, pretty much, for nearly the whole time we’ve been together. Their health has often been bad — especially their mental health, and after a serious neurological illness they had back in 2007. They’ve got a ton of history behind why they’re so mentally ill, and there’s plenty of reasons why they have the issues they do. Panic. Anxiety. Depression. Paranoia. Verbal aggression. A real roller coaster of emotions — with very little calm in the meantime.

Does it get old? Oh, you betcha. But they’re the love of my life, so you take the bad with the good.

And you take care of yourself.

So, this “vacation”, I need to be really clear about what I will and will not do. I need to not bend over backwards for them, just because they’re on vacation and think they should be treated like royalty. They’re not the only person who deserves a break, and I need to get some rest, too. In some ways, coming home from Monday to Wednesday is going to be a real relief for me. I’ll have the house to myself, I’ll be able to eat whatever I like — actually much healthier than how my spouse will eat. And I’ll be able to get to bed at decent times without that late-night drama they love to stir up.

So, it’s all going to work out for the best, I believe.

I just have to remember that my spouse is actually impaired in some significant ways, and I need to adjust and adapt and plan ahead.

And not get my hopes up for things that have never happened before, and will probably never happen, period. Like getting on the road at the pre-agreed time. Or having a low-key and very no-nonsense sort of trip.

The main thing is that I find a way to really enjoy myself, take care of myself, and actually get some rest. The condo where we’re staying has three floors, and I’ll be downstairs in a quiet, dark bedroom with couch and desk and its own bathroom, while my spouse will be up on the top floor. It works out well, and it leaves room for both of us to move at our own paces and have some freedom from each other. We’re both getting older and a lot more set in our ways — and a lot less willing to compromise.

More rigid? Yes. But also more discerning, and not so willing to give ground on things that really matter to us personally.

I think a lot of couples find this as they get older. They either split up, or they stick together and find a way to peacefully co-exist, whilst pursuing different interests that are all their own. I know I’m at that point in my life, and it’s not worth hassling over. It really isn’t.

So, I just need to take care of myself and have the vacation I want. Whatever my spouse does, is on them. No skin off my teeth. Not if I don’t let it.

Resting well

Note the smile on the resting face… :)

I had a pretty good day, yesterday. I got things done that I needed to do, and I got some good exercise. I also had a lot of alone-time, as my spouse was traveling for business.

Today we’re going to the beach, which I am looking forward to. It’s been tough to get out and get to the water, this summer. I’ve been really tired from work, and I’ve had some rough patches, when things seemed to be really falling apart on the inside.

On the outside, everything was cool and happenin’, with my new job and new responsibilities. My interior world was a little different, though. I had a lot of doubt and struggle that I never wanted to give in to. I just kept going and didn’t get bogged down in it. And it didn’t stop me.

At the same time, it was still very difficult, and I’m glad I’m getting to a balanced place, right now.

Rest has become really important to me. I’m realizing how much I need, more and more each day. If I’m not rested, my brain doesn’t work right. And now that I’m not running on pure adrenaline, 24 hours a day, I can feel how worn out I got from that old job.

It just was not a good fit for me, mentally, physically, philosophically. The philosophical aspect is really important, because it’s about my values and what I think of the world. If my workplace is not in alignment with my values, it sets up a huge amount of stress. I’m surprised I stayed as long as I did — but that was really because of the connections I felt with people there.

And the fact that I couldn’t find a decent fit anywhere else.

Now that’s behind me, and I am really shifting my energy sources to real things, instead of pure adrenaline and stress. I don’t need to use stress to dull the pain or give me energy, because I don’t have to friggin’ deal with those crazy people anymore. Geez, where they a piece of work. But that now falls into the category of Not My Problem, so let’s move on.

Moving on… now that I have the time, I can actually get some decent rest at night. I can get 8 hours easily, whenever I want. No 7 a.m. conference calls. No 9 p.m. conference calls. No global drama. No chasing down problems at breakneck speed, only to find a whole slew of other problems waiting in the wings. None of that, thank heavens. I can also spend an hour or so each morning reading and writing and thinking, which is a huge thing for me.

I can’t believe how little time I actually spent thinking, over the years. It’s like my brain wasn’t required on the job. Just show up, do as you’re told, and shut up about it.

Now, I’m “allowed” — even encouraged — to think on the job. And that’s a huge thing, because working with people who are anti-“intellectual” and make a point of never applying their minds to much of anything, gets to be pretty old. This happened in the last few jobs I had. Looking back, I can see how I gravitated towards positions where I actually didn’t have to think much about anything, because my brain wasn’t working all that well. In a way, those mindless jobs really stabilized me and provided an income to help me get back on my feet. They served their purpose, and for that I’m very grateful.

And I’m also grateful I’ve moved on. I’m grateful that I could move on.

Anyway, it’s a beautiful day today, and I have a few hours before we’re heading out for the afternoon. I got my Big Online Chore done last night in no time, which was completely awesome. I had allotted 2 hours to doing it, because that’s how long it always took me before. Sometimes longer. It was a huge chore, because I would have to block off hours of time to do it, and then check it, to make sure everything was uploaded and working properly. But I’ve recently changed internet service providers, and my internet connection is 20x faster than it was before — literally. So, what usually took me 2-3 hours on average, took me 20 minutes. I was done. And I had a couple extra hours.

So, I had some tea, read for a little bit, and went to bed happy.

Which is great.

I have to say, getting used to not being pushed to my physical and mental limits, each and every day, is pretty cool. For years, I’ve pushed myself really, really hard, because it kept me awake and feeling alive. But it turned into a drain that sapped all my energy and turned me into a zombified crazy person. And I didn’t like where I was going. I had a pretty shitty outlook on life — largely because I was so tired and maxed out all the time. Now that I’m not pushing myself like crazy, and I have a good foundation with a decent job that’s close to home (and getting closer in another 6 weeks — woo hoo!), I have the leeway to step back, look around myself, and see what else I have to live for, besides dulling the pain and distracting myself from all my troubles.

And rest has played a big role in this little success story.

Rest, and getting into a job where I’m expected to think for a living.

It’s an adjustment, but I’m sure I’ll manage ;)

Onward.

It really does matter how you look at things — and yes, you can choose

Your brain is more powerful than you think!

So, after posting about working on my perspective, I took a quick look at my Twitter feed, and I found a mention of a new study that’s been published:

Neurophysiological correlates of various mental perspectives.

From the Abstract:
A common view of consciousness is that our mind presents emotions, experiences, and images in an internal mental (re-)presentation space which in a state of wakefulness is triggered by the world outside. Consciousness can be defined as the observation of this inner mental space. We propose a new model, in which the state of the conscious observer is defined by the observer’s mental position and focus of attention. The mental position of the observer can either be within the mental self (intrapersonal space), in the mental outer world (extrapersonal space) or in an empathic connection, i.e., within the intrapersonal space of another person (perspective taking). The focus of attention can be directed toward the self or toward the outside world. This mental space model can help us to understand the patterns of relationships and interactions with other persons as they occur in social life. To investigate the neurophysiological correlates and discriminability of the different mental states, we conducted an EEG experiment measuring the brain activity of 16 subjects via 64 electrodes while they engaged in different mental positions (intrapersonal, extrapersonal, perspective taking) with different attentional foci (self, object). Compared to external mental locations, internal ones showed significantly increased alpha2 power, especially when the observer was focusing on an object. Alpha2 and beta2 were increased in the empathic condition compared to the extrapersonal perspective. Delta power was significantly higher when the attentional focus was directed toward an object in comparison to the participant’s own self. This exploratory study demonstrates highly significant differences between various mental locations and foci, suggesting that the proposed categories of mental location and intra- and interpersonal attentional foci are not only helpful theoretical concepts but are also physiologically relevant and therefore may relate to basic brain processing mechanisms.

I downloaded the paper – you can get it here http://journal.frontiersin.org/Journal/10.3389/fnhum.2014.00637/pdf – but I haven’t had a chance to read it, yet. There are some pictures with color, which are probably going to be cool to look at, once I get my head on straight today. I’m still a bit foggy from this past week. But I’ll have some free time this afternoon to chill and relax and rest, and hopefully read this paper.

Basically, it sounds like they’re saying that your state – your experiences, emotions, and images in life – can be determined by internal focus, rather than external circumstances. That focus can be on others, or on yourself. But the important part is — it’s your focus, it’s your choice. And different parts of the brain “light up”, depending which choices you make about what to focus on.

Where you put your focus determines how your brain "lights up"

Where you put your focus determines how your brain “lights up” – downloaded the paper here http://journal.frontiersin.org/Journal/10.3389/fnhum.2014.00637/pdf

Or, more simply put - we don’t have to be victims of circumstance and pushed around at the mercy of the rest of the world. We can choose how we want to feel and think and experience our lives, regardless of external circumstances.

Of course, this is assuming that you have the energy to focus your attention on what you want to think and feel. If you’re in poor health and you feel like crap and you have no energy, it can be pretty tough to keep a positive outlook.

But it can be done.

Pick your perspective

It’s all in the eye of the beholder

My new project, these days, is working on my perspective. I have fallen prey to a lot of anger and bitterness and also resentment about things which are actually nobody’s fault. They just happen. And it doesn’t make a lot of sense for me to get all tweaked about them.

Things at work are very tense and stressful for a lot of folks. I know that they will be okay, and everything will turn out okay over time. But there is a lot of stress and strain going on, and a lot of people are very nervous about their team’s ability to do the job — and do it right.

It has been getting to me, too. That much has been clear, in the past several weeks. I’ve been having episodes where I suddenly get tunnel vision, and then I have a headache for days after that. I also feel foggy and dull – numb and dumb – and I’m very low, physically. I need to address this, because my physical health directly affects my point of view. My neuropsych focuses on my thinking and how it stresses me out. And that’s true — my crappy perspective doesn’t do me any favors, sometimes. At the same time, my physical health plays a huge part in it, and I have been feeling very low and dull and lethargic.

I seriously need to jump-start myself. I’m just so blahhhh… I’m in a new job that’s closer to home, which means I don’t have to work as hard to get there. But having things be easier that way has not translated to my energy improving. The thing is, all my energy used to come from adrenaline and extreme stress, and now that it’s not there anymore, I need to replace it with something else.

Like physical fitness. I worked out more this morning than I have in a while — lifting weights and focusing on my arms, which have become flabby and fat. I usually wear long sleeves, so I don’t see my arms as they are, but lately I’ve been noticing them.

I think things will turn around in another couple of months, when we have moved to a new building that has a gym I will be able to use. Also, the location is 10-15 minutes closer to my home, so I will have more time to exercise, in addition to the other things I do.

I also need to start doing something when I get home from work in the evenings. Last night, I was so exhausted when I got home, I had to lie down for an hour before I made supper. Fortunately, I got home early enough that I could do that. I was wiped out. Completely done. Feeling sick and stupid. And later I had an argument with my spouse that really bothered me, because their cognitive decline is starting to show more and more. They had trouble speaking, and they got really angry over something I was doing — and I just didn’t feel like taking the brunt of their anger after such a long day.

So, I really need to work on my outlook and my perspective in life. I need to find a way to make peace with things turning out as they do — and not fight it all the time and turn it into a tragedy in my head. Or maybe just let it be a tragedy and accept it as such. Shit happens. And it happens to all of us.

So it goes.

Not for me, though. I’m determined to not let myself go down that route. My spouse lives in a very different world than mine — very paranoid and suspicious and antagonistic. It’s like we live on different planets; yet theirs is every bit as real for them, as mine is for me.

There’s no point in arguing about whether or not it’s true — it’s true for them, it’s real for them, and that’s the experience they’re having. The real problem is that I can’t accept it, I feel really judgmental towards it, and it makes me so uncomfortable. And when I’m tired, I get very rigid and am quick to anger.

That doesn’t help.

Anyway, I’m feeling good that I got in that exercise, first thing this morning. My arms are tired — and that’s a really good sign. It means I’m making the point to do something right, that I’ve been neglecting for a long time.

Happy Saturday, everyone.

Onward.

A little here, a little there, and all the while paying close attention

All those details bring the brain to life

We think too much in our daily lives. Most of us, anyway.

We read too much news that has nothing to do with us personally, and about which we can do nothing. Nothing at all.

We spend a lot of time and energy, packing our days full of activity and “achievement” and all the while we are getting farther and farther from the very things that give us satisfaction and a sense of meaning and purpose.

We move too fast, thinking that will get us more to think about and enjoy and experience.

I’m seeing that with my parents, who are on a hell-bent all-out rush to do everything they can pack into their lives — apparently wanting to get everything accomplished before they die. They’re not getting any younger, and they seem keenly aware of that. It’s almost impossible to pin them down, these days. They pick up and go at a moment’s notice  — camping, traveling, hiking, doing, doing, doing, doing….

The tyranny of a life devoted to checking off all the items on your “bucket list” is cruel and sadistic. You race and race and rush and rush, doing everything, seeing nothing, experiencing nothing, just having a completed checklist at the end.

But the simple fact of my own life is that doing less and digging in more, is far more satisfactory than packing in all kinds of hyperactive pastimes that produce far more fatigue than awareness. I’d rather stand still in one place, examining the toad that has taken up residence near my back door bug light, feeling the sun on my skin and the wind at my back, and even the mosquitoes flying around my ears… than race from Point A to Point B at top speed, just for the sake of getting there.

I’m really in no hurry.

Maybe it’s because I’m not afraid. I’m not afraid to lose, I’m not afraid to die. I’m not afraid. So, I’m in no rush.

Not today, anyway.

This, of course, is a huge change from where I was 10 years ago. Even 5 years ago. Even 5 months ago. It’s where I am right now. There’s no guarantee I won’t be wracked by fear in another 5 hours, but right here, right now, I’m pretty chill, with my feet firmly planted on the ground, and no — I mean no — fear of the unknown.

And I’m taking my time today, just soaking it all in. It’s good for my brain. It’s good for my life. Stopping to really zero in on what’s around me, having a really in-depth experience with it all… that’s the ticket.

I’m doing some reading, some writing, some work around the house and the yard. I’m moving through my days, just letting them all sink in, and enjoying them for what they are. I’ve been thinking hard about my life up to this point, and I’m feeling pretty damn’ good about how far I’ve come. Especially since my TBI in 2004. My ten-year anniversary is coming up… and I’m starting to get reflective, pensive… and extremely grateful for the recovery I’ve been blessed to experience.

It’s funny… the other day, I bumped my head as I was getting in my car. Ouch. I’ve had a little bit of a headache since, but I haven’t lost it over the whole thing. I’ve had bumps and falls, over the past few years, and they freaked me out a bit. But this time, I’ve been pretty chilled out about it. I have a sore spot on my head and a little bit of a headache, but other than that, I have no other symptoms.

I’m still paying close attention to what’s going on with me, because I don’t want to have any complications building on my past TBIs, and I don’t want to let a potential concussion go unattended. It’s all too easy to let things slide, and then end up worse off over the long term.

However, based on what I’ve experienced so far — no detectable cognitive or motor issues, no fogginess or other ill-effects — I seem to be fine.

Speaking of fine, it’s time for me to get out in this day. I have another day off work, which is fantastic. And I have a few hours before I need to head into the city to do some errands. Life is good. And it’s worth spending the extra time to pay close attention to the details.

Getting lots done is all very well and good. But in the end, I’d rather be able to remember and appreciate what I’ve experienced along the way.

Onward.

Sleep, work, eat, live… rinse and repeat

Get the right stuff — to your health!

I was flying solo last evening, moving at my own pace and enjoying having the house to myself. I watched a bit of t.v., then realized what a huge waste of time it was. I hate watching t.v. alone. So, I got online and started doing some research. One thing led to another, and eventually I looked at the clock and it was nearly 1 a.m.

And here I’d planned on getting to be early…

Well, it’s no biggie, because I took care of most of my chores yesterday, so I would have today free. I have a full day ahead of me, pretty much wide open without a lot of stuff I have to do. I’m thinking of taking a long walk. I exercised this morning on the stationary bike. Worked up a good sweat and got my blood pumping. That was helpful.

Yesterday was a pretty good day. I got some work done around the house, I went for a short bike ride, and I had a nice nap in the afternoon. I could have slept longer, but I didn’t want to wreck my sleeping schedule by sleeping too long.

We see how that worked out.

In any case, my goal today is to stay active enough this morning to tire myself out early this afternoon and have another nap to make up for the lost hours — and not sleep so late in the day that I wake up at 7:30 like I did last night.

That clearly does not work.

I’m also looking forward to lying in bed and reading. I’ve really gotten into a lot of reading, these days, now that I can. I’ve missed it. And I’ve also missed being able to read narratives — fiction and real-life. For years, the only thing that held my attention was scientific papers. That’s fine, if you’re a scientist and understand everything in them, but I’m not — and I didn’t. At least it was something to read. And I was under the impression that I “got it” in some way.

Whatever. It did me a lot of good. It got me reading in small chunks that seemed to make sense to me, and that were informative and very motivating.

Now I’m reading fiction. I read while I’m on the exercise bike — it gets my mind off how incredibly BORING riding an exercise bike is, plus it gets my brain engaged, along with my body. I’ve been able to ride longer and also read more, thanks to this combination. It’s really a brilliant solution to what can be prohibitive. Plus, I’m reading real-life stories (or fiction that’s based on real life), so there’s a reason for me to pay attention to what I’m reading.

I’m learning a lot in the process — mainly about how people go about their everyday lives in foreign countries. It’s like a vacation from my current life, which is really a nice break from that crazy old global deal I used to be in. I don’t have to be on European AND Asian time zones all the time, but I actually miss the variety… So, I read about those places, watch Anthony Bourdain, and think about cooking food.

I’m seriously considering taking up more active cooking. I do most of the cooking at home, because my spouse isn’t up to it. And over the past years, it’s been pretty much maintenance cooking — just getting the basics on the stove, with reliable, predictable, dependable recipes that don’t have a whole lot of excitement to them.

I think I need to change things up a bit — especially because it now feels like I’m/we’re just eating to get food in our stomachs, rather than really enjoy what we’re eating. I need some different tastes, and some different textures. I also need us to eat a wider variety of fresh vegetables. It’s summer, for heaven’s sake. Now is the time to get fresh fruits and veggies. The more organic, the better — the less chemical taste to them, the better, that is.

Food is becoming my favorite vice… or rather my salvation. Cooking does wonders for my sense of timing and pacing — my sequencing — as well as my frustration tolerance. On top of it, when done properly, a well-cooked meal feeds all the senses, which is incredibly good for the brain.

It’s the kind of activity I can really get behind. It does the body, brain, and spirit a whole lot of good.

Time to make a shopping list…

Walking on a different wild side

I’ve been daydreaming about chucking it all and hitting the road. I’ve managed to save up a nice little chunk of change, banking it for house repairs and emergency situations. I actually have enough for an honest-to-God emergency fund now, which hasn’t been the case for close to 10 years. It really takes the pressure off. At the same time, though, it also tempts me to do something rash — like taking my little commuter car (which just got a tune-up), filling up the gas tank, and driving, driving, driving…

But I know it would never work. Never, ever. And without a doubt, I’d end up worse off then, than I am now. No doubt.

Here’s the thing — I need a break from all the heavy-duty daily frustrations. It’s just getting to be too much, and I’m not making good choices about how to get that break. Some people smoke. Some people go on social media. I dance with danger and run the risk of getting injured all over again. It’s clear that I need to change things up and get my blood pumping on a regular basis. I need a positive and productive way to get that adrenaline pump that keeps me sane and channel the energy I have into something that helps me, not hurts me.

That all being said, I think the key for me is to step things up with my hopes and dreams. I have an “old” dream of having my own business doing consulting and training about an area of expertise I have. I know there’s a market for it, and I know others do well in that line of work, I’ve just never made good on it. I have wanted this so badly, on and off over the past years,and I’ve made some starts, here and there. But I’ve repeatedly given up on that dream over and over. I got overwhelmed or confused or just felt like I couldn’t do it. I knew in my mind that I could, but I lost courage and backed off and went back to doing what I had been doing before — holding down the fort with my 9-to-5 job and steady paycheck.

Now things are different, though. I don’t have a horrific commute anymore — if anything, it’s going to get shorter. And I’m becoming increasingly motivated to move forward, as I talk to people about my idea, and they get really excited about it. I have managed to find a job where every day I am in the midst of some very forward-thinking people who are also super supportive, and it’s really doing me a lot of good.

These two magic combinations — time to work on my ideas, and supportive people with vision — are helping me get past myself and re-start anew. I’ve started this idea so many times, I actually have a lot of knowledge about how to get off the ground. And I have enough professional connections, I can start putting myself out there — while still holding down the fort at work.

So, there is hope. And my goal is to earn enough on the side, to be able to afford some travel. That way I don’t have to drive off by myself — I can bring my spouse with me, and we can have a fabulous time. It’s a plan. It’s a bonafide plan.

And rather than wasting my time and energy and risking my neck on danger-seeking types of behavior, I’ll court danger in the form of chasing my dreams and having them come true. Putting my life in danger in questionable situations, and putting it all on the line for my dreams, are the same type of activity. The difference is, one of them will actually have something to show for my risk-taking. The first one… all I get is a system full of adrenaline, a brief burst of clarity, and the potential for things to go really, really wrong in an instant.

So, in a very real sense, my motto continues to be Onward!

After TBI you’re still human

And you still have the same types of interests and desires and needs that you had before your injury/-ies.

You want to be fully engaged. You want to be involved in your life. You want to have hopes and dreams and to follow those hopes and dreams.

Why should any of that change after TBI? Some days, it’s like the world just expects you to stop being interested in the things that mean the most to you — to anyone. Like it should be so easy to let go of the old ways that were so familiar and made you “you“. And you’re just expected to do it. To adjust. To deal with it and move on.

This is something I really struggle with on a regular basis. It’s bad enough that I have to deal with the confusion and disorientation and not feeling quite “here”, half the time. It’s bad enough that I have to think through every friggin’ thing that used to come so easily to me, lest I get hurt or screw something up. It’s bad enough that everything feels like such a CHORE, and even the fun things are hard for me to do, sometimes.

But through all this, I’m expected to do it without any recognition or support. That just sux.

Even my neuropsych isn’t much help to me in this respect, because comparatively speaking, I’m not nearly as “bad” as their other patients. I’m high-functioning. My IQ is still up there. I have a good job and a house and all the trappings of modern success. I’m in a stable marriage of 23 years. I have a bank account and a plan for how to live my life.

What could possibly be wrong?

Yeah, well, I’ll spare you the details. The bottom line is, half the time I feel like crap. I don’t feel like myself. I can’t recognize the person who’s walking around in my shoes, wearing my clothes, doing my job, driving my commuter car to and from work each day, running errands on the weekend. Who IS this person, and how did they get in my life?

Addressing this is so difficult for me. I rarely bring it up with my neuropsych, because they don’t really seem to think it’s that big of a deal, and they don’t seem to think it should impact me. After all, compared to their other patients, I’m doing grand.

Oh, except for flirting with danger on a regular basis, and being totally oblivious to what all could go wrong in an instant.

To be truthful, I have not discussed everything with my neuropsych that I could. Over the years, there have been a lot of things I haven’t brought up, because they are way too upsetting for me, and it’s more important to me that I have a regular conversation with a regular person and be able to relax, instead of plunging into that infinite, bottomless black abyss that takes me over when the emotions run too high. I have to stay functional. I have to hold my sh*t together. I can’t be sitting around spilling my guts, and then getting so freaked out and upset that I can’t even see or walk straight. My neuropsych has seen me overwrought a handful of times, and they don’t seem to understand what all is going on with me. They got exasperated, as though I were not trying.

So, I just don’t go there with them. I keep things positive and talk about the progress I’m making. I don’t have many words to explain the way it feels inside. Plus, when I get to their office, I’m ALL THERE, and nothing else outside the office exists. There are so many pieces of my life that feel like a shambles to me, even though on the surface they look good and they are holding, I don’t have much hope that a strong wind wouldn’t blow them all down. In all honesty, I’m not even sure how they’re holding together. They just are. I’m just lucky, in so many ways.

That, and people are so consumed with their own lives, they don’t notice the chinks in my armor.

It all just feels so precarious.

And it’s a strain. Because I want to have a life I can be proud of. I want a life I actually feel like I choose, and I’m involved in, not just one that other people tell me I should have, so I go ahead and go for it.

So much of my life has been about just getting by… because I was the only one who could see what kind of crap I had to deal with inside. And nobody seemed to take seriously the challenges I had to overcome on a regular basis.

Oh well. I’m still here, and I still have my hopes and dreams to follow. I’m still a human being with my fair share of challenges, and I can’t lose sight of that. It’s all a massive discovery process, and in the meantime I might just learn a useful thing or two.

So long as I don’t get myself killed, chasing danger and risk, to remind myself that I’m alive.

How I can get hurt – again and again

Yeah, I’m a bad-ass alright. Hopefully not a short-lived bad-ass.

I had an interesting conversation with my neuropsych yesterday. I have been wondering about some judgments I’ve made, in the past six months or so, which — at the time — seemed fine… but in retrospect were probably not that smart. At least, that’s what my neuropsych has told me.

About six months ago, I was offered a ride on the back of a motorcycle, and I took it. I had to get somewhere fast, and this rider offered me a lift through a shortcut they knew. This rider (I won’t call them a biker, because I think of Harley’s, and this individual was on a BMW) was a stranger to me, and I had no way of knowing how good a rider they were. I’ve ridden with really bad motorcycle drivers before, and I didn’t care to repeat the experience.

But this individual appeared to be competent, and I hopped on the bike behind them.

For the record, I don’t drive motorcycles — or usually ride them — because of balance issues and attention problems. I can get distracted and lose my presence of mind, which pretty much disqualifies me for driving a motorcycle. It’s a great way to get seriously injured… or killed.

Anyway, the shortcut worked, and I got where I was going in record time. But not before we’d pulled some really dangerous stunts — fitting the motorcycle through very tight spots that were borderline illegal, and weaving in and out of traffic at high speeds. The driver also ended up taking a wrong turn, and we ended up driving around a blind curve directly into oncoming traffic — and the bike stalled on a low barrier and couldn’t move forward or back.

So, I hopped off the back, and while the driver got the bike started, I heaved at the back of the bike and got it off the barrier.

Very exciting. And also very dangerous. And potentially fatal.

Once I got where I was going, I realized how close I’d come to something pretty terrible. And worse yet, I was far from home in a place I wasn’t familiar with, and I’m not sure how I would have gotten help if I needed it.

It all turned out okay, and it was a thrilling ride of my life. But it’s not the sort of thing I should have done at that time.

A few months later, I was traveling (again). Near the end of a really long and tiring drive, I ended up at a rest stop where I realized I was being watched by an individual who looked like trouble. I gave them a wide berth, but later they were joined by another individual who looked equally rough, and they tried to engage me in conversation. Rather than keeping my distance, I walked right up to them, shook their hands, and had an extended conversation with them. In the course of the conversation, one of them identified themself as a known criminal. I didn’t bat an eye, just finished the conversation, and they took off… as though they were up to no good and didn’t want to get caught.

In retrospect, I was setting myself up to get mugged. Big-time. I didn’t… and I actually had a really cool conversation with those two. But was it a good idea for me to interact with these two at a rest stop along an interstate? Doubtful.

Then, the other night, I was driving home from work, and I got caught in a torrential downpour, accompanied by close lightning strikes. I could not see the road. At all. I should have pulled over, but I kept going. I could have easily run into a tree — or run into someone else. I didn’t, but even as I was driving, thinking that I might want to pull over, the urge to keep going was even stronger… overpowering. I got home safe and sound, and after sitting in the car for 5 minutes, the downpour suddenly stopped. Everything was fine. But it might not have been.

On all three of these occasions, I was tired, and I was looking for a “hit” of adrenaline to perk me up. I needed a pump — a jolt — to get me going. It didn’t matter that I was putting myself in danger. The whole point was putting myself in danger. I needed to get my stress hormones going and get myself back online. I felt dull and foggy, and I needed a boost.

So, I put myself directly in harm’s way. It worked — I did get the pump and the jolt I needed. But had things gone differently, I might not have fared so well. For that matter, I might not even be here.

Riding motorcycles is something I should NEVER, EVER do. I know that. I have avoided them like the plague — like I avoid tall ladders. Talking to folks who obviously look like they’re up to no good, and going so far as to shake their hands and “hang out”, is not something I typically do, either. I know better. What’s more, driving my car through conditions when I can’t see more than a foot past the hood ornament… I know WAY better than that.

But reason failed me. In a very big way.

And that’s how I can get hurt – again and again. By actively seeking out danger that makes me feel alive… that makes me feel like myself again… that puts all the pain and confusion and frustration away, for even just a few minutes.

My life tends to feel like a jumbled-up mess of contradictions and conflicts, and it’s hard for me to get any peace. I live in a body whose biochemistry tells me things are WAY more extreme than they really are, and as a result, I usually end up on a roller-coaster of emotion. I know better… but my body doesn’t get it. And it wears me out. Mentally and cognitively, my brain loves to do its own thing and not stick with the program. I’ve been forgetting a lot of things, and I’ve been coming up short, now and then, with projects I’ve been working on… playing catch-up and all that. I keep cool and maintain calm on the outside, but inside it’s sometimes pretty chaotic and frustrating and a little bit terrifying now and then.

So on the inside, I’ve got all these experiences of chaos and confusion and frustration, while on the outside, everything is supposedly okay. I know I’m not the only one who has this — most people do, probably. That whole “living lives of quiet desperation” thing that a philosopher once talked about.

That tires me out. And the quickest and most reliable way I know to stay “with it” is to add a little danger to my life. Or a lot of danger.

Looking back, I can see how almost all of my injuries — even from fairly young — came from this danger-seeking streak of mine. I put myself in dangerous situations. I also pushed myself to unsafe levels of play in football and soccer games. I drove while I was tired, and I pushed myself to do things when I should have stopped and rested. I needed the pump, I needed the adrenaline. I needed the shot of instant clarity, in the midst of all the confusion and static in my head, that I just couldn’t sort through.

I didn’t have a death wish. I had a life wish. And the one way I could really truly live my life, was to push myself past a certain point, and get lifted up by the pump.

I know I need to change this sort of behavior. It’s caused problems for me before, in subtle ways, and it’s doing it again. I don’t want to stop being the person I am. I don’t want to cower in a corner, hiding from life. But I would like to live to see another day. I’ll have to figure out something better, for how to get what I need to be as alive as I can be.

If I don’t manage to figure that out, all bets are off.

Doing AND Enjoying

One of the things that has really become clear to me over the past several years, is that being functional is not enough for me. I need to do more than live my life — I also need to enjoy it.

What has also become clear to me, is that the more I enjoy what I’m doing, the more I engage with it — the stronger the positive impact it has on me and my brain.

So, enjoying what I’m doing is actually a big part of my TBI recovery.

I have to say that enjoying what I’m doing while I’m doing it has helped me turn the corner from a plateau I was at, a couple of years ago. I was making good progress, and I was rebuilding a lot of the kinds of self-regulation skills that went out the window when I fell in 2004.

I was better able to manage my temper, I was better able to manage how I behaved when I went through extreme ups and downs. I was better able to interact with other people. And my functioning at work was really on the up-swing.

But I felt like I was at a plateau. I just didn’t feel like myself, and I didn’t feel like I was making any more progress.

I might have been — and in fact logically I really was convinced that I was still progressing — but it sure didn’t feel like it.

For a number of years in my TBI recovery, I had beenreally locked in on an ultimate goal of being as brilliantly functional as I could be, including taking my performance to the next level and really “kickin’ it” to the highest point I could possibly reach. But I had hit a few plateaus along the way, and the experience had not been great at all. I had struggled with it so much… but ultimately through no apparent doing of my own, those plateaus had dissolved, and I was on to the next piece of progress.

So, I decided to just forget about it, and just enjoy my life. I figured, if I was going to be on a plateau, I might as well have some enjoyment out of it, instead of just mindlessly laboring along — seemingly in vain — and chafing over my lack of progress.

I also suspected that deliberately deciding to enjoy my life would kick-start something in my brain. I would take in all the sights and scents and tastes and experiences around me (as much as possible, given my limited energy and difficulties with my sensitivities). I would really see how much I could enjoy them. And I would stop, when it got to be too much for me. I would change my focus and approach, and my brain would adapt in completely new ways. I would forget about the same old working-working-working, because I had been doing exactly that for years, and I still got to a plateau, anyway. My brain clearly needed a variation from all the same kind of work.

I also figured my system needed a break, period, to rest and recoup and integrate all the new skills I was trying to build.

But most of all, I just wanted to enjoy my life. To fill it with happiness and joy in the little things, each and every day. I have been working so hard for so long. I needed a reward.

I can’t say that I’ve been particularly successful at stopping the working. I have a strong work ethic that isn’t going to quit. But when I consider enjoying my life to be a type of “work”, then I can do it. Then it makes sense.

My TBIs have cost me dearly in my life. I really resent every single one of them, because I have the sense that every time I got hurt (about 9 times, starting near the beginning of my life), it set me back a little bit, and took me steps farther away from my dreams. Each successive mild traumatic brain injury had a larger and larger impact on me, and even though they were supposed to be “mild”, the after-effects were anything but mild.

So much pain, so much suffering… not only for me, but for everyone around me…

And that pisses me off.

So, yeah, I’m going to want to work my a$$ off to overcome this. And as it turns out choosing to enjoy my life, to take in the senses of the world around me, helps me do that in a new and different way. Choosing to listen to the birds in my back yard, smell supper cooking on the stove after a long day of work, feel the light brush of ferns against my legs as I walk in the woods, sense the unevenness of the ground beneath me as I walk along my road… it all gets me to pay attention beyond the racket in my head, and it trains my brain to sort through all the different inputs… and also to relax.

Pressure and stress are terrible for TBI recovery, and anything we can do to limit them is a good thing (within reason, of course).

As it turns out, taking the pressure off and just enjoying my life has really kick-started parts of my brain that have been struggling for a long time. I’m reading again. I’m thinking in much better patterns again. I am doing better at dealing with people.

And that’s good.

Onward.