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.

Good gone bad in a hurry

Bummer… and things were going so well

So, last night I was fixing supper, and I messed something up. My spouse was in the kitchen with me, and they started saying things that sounded critical to me, like they can do better than me. I got really agitated and frustrated, and I had a bit of a blow-up at them. I was really angry over them finding fault with what I was doing and comparing their own performance to mine. It was a double put-down. 1) I screwed up, 2) they can do so much better than me.

It really pissed me off, and I got so angry, and then they went into their usual behavioral “repertoire” of acting like I was a bad person for getting angry and yelling — like I was threatening them and being abusive. Oh Lord, oh Lord, oh Lord… I was upset and trying to express myself, and all they could do was make me look like I was the one at fault, and my anger was a threat to them.

I got pretty angry — not over the top, throwing-things angry, but so frustrated and agitated that I almost couldn’t see. And then POP, something in my head felt like it snapped, and I had this sensation of my brain locking up and slowing down to a crawl. It was like someone cracked open a smelling salts capsule — but it had the exact opposite effect. I instantly felt dull and numb, with my face numb and tingling, and my hands tingling. I could physically feel it in my head. I turned into an instant idiot — it was hard for me to understand what was being said, and I couldn’t put words together. My head felt like it had filled up with cotton, and I was suddenly so dull.

I didn’t think it was a stroke, because I haven’t been impaired on one side of my body or the other — and I stuck out my tongue to see if it bent from one side or the other, and it didn’t.

Then again, according to the National Stroke Association, here are the signs of stroke:

Stroke symptoms include:
  • SUDDEN numbness or weakness of face, arm or leg – especially on one side of the body.
  • SUDDEN confusion, trouble speaking or understanding.
  • SUDDEN trouble seeing in one or both eyes.
  • SUDDEN trouble walking, dizziness, loss of balance or coordination.
  • SUDDEN severe headache with no known cause.

So, maybe it was one. I don’t know. One side of my body wasn’t weaker than the other, which is what I usually associate with stroke. I have a meeting with my neuropsych this afternoon, so I’ll check with them. I’m hesitant, because I don’t want trouble from all this. Plus, it has happened to me before — about 3 weeks ago after a meeting when I got really upset with the behavior of some of the folks in the meeting. It was very similar to that time — I felt something “pop” in my head, and I turned into an instant idiot — couldn’t put words together, had trouble speaking, felt slow, and had a low-grade headache.

This time I didn’t get nearly as angry. But the feeling was the same, and now I’m dense and dull and I’m having trouble putting words together. Three weeks ago, it passed. And it didn’t seem like a big enough deal to investigate. It was not much worse than other “episodes” I’ve had in the past, and when I tried to investigate them before, nobody seemed to think they were that big of a deal, and I felt like an idiot for even bringing them up.

I know I’m supposed to go to the ER as soon as I suspect I’m having a stroke, but how would that work, exactly? I can’t miss work, because then I don’t get paid. And my mortgage won’t wait. I’m the only one who’s supporting my household, and if I’m out of work, we’re all pretty much screwed.

I started to get a headache after a while, last night, and I took some Advil, but it didn’t really help. I still have that headache in the front and top of my head, and also towards the back where I hit my head on Saturday.

Seizure? Stroke? Whatever. I’m sounding a little nonchalant about this, I guess, but my feeling is that this kind of stuff has happened with me so often over the years, it’s just one more thing. And even if I did have a stroke, I know how to fix my brain, and manage my issues, so I’m not all that worried. Hell, even if I do become really hampered by my brain, I know how to live my life in a way that brings me happiness and joy. I know how to bounce back and keep going, so I’ll just keep doing what I’ve been doing.

I am reminded of a number of things I need to do is stay vigilant about:

  1. Remember that my spouse is actually mentally ill. Their panic/anxiety disorder has wreaked havoc, and it is a genuine mental illness. They seem to believe that their anxiety is keeping them “safe” from whatever dangers may be out there, and the “help” they are getting from friends and their therapist seems to only reinforce their fears and their devotion to their “precautions”. They are so absolutely imprisoned by their fear about every conceivable thing on the planet, that anyone around them has to abide by their brittle rules or bear the brunt of their wrath. They feel safe when everything is going their way, but it’s absolutely smothering and restrictive for anyone who does not share their view.
  2. Underlying all this anxiety is a handful of neurological issues which are screwing with their thought process. It’s not something I can take personally, when they go off on me. I love and adore my spouse and would love to spend more time with them. Still, it’s really hard to be around them. The other thing that makes it all hard, is that I’m just about the only one who can spend any extended time around them — they’ve chased off just about everyone else with their anxious control. And they don’t understand why that is. Explaining won’t make any difference, because to them, their fears all make perfect sense — and it’s neurological. So there’s only so much explaining I can do.
  3. I need to take care of myself and get what I need for myself to stay strong. I was tired, last night, and I pushed myself too hard. I need to back off and take some time to myself, especially when I spend extended periods with my spouse. My spouse and I had gone for a drive earlier, yesterday before my outburst, and they are so anxiety-ridden about just about everything, that it’s very stressful to be around them. It’s like a never-ending drama — over huge dangers and threats which seem like they’re nothing to me. When I do the driving, they constantly boss me and yell at me about how I drive, where I should turn, what I should do. It’s a total friggin’ drain.
  4. I need to keep to a regularly active schedule. I was out of sorts already, last night before my outburst, because I was off my regular schedule. I also did not expend enough energy over the weekend and wear myself out physically. I need that. I need to keep active and tire myself out, so I don’t think too damn’ much.
  5. My spouses’ way of living is not healthy — for them or for anyone. They spend a lot of time sitting around thinking about shit that makes them crazy, and they end up pulling me into their undertow. When I am around them, they use me as a “sounding board” which just sucks me into their downward spiral. This is not good. I need to keep myself up and elevated and healthy and take regular breaks when I spend a lot of time around them.

Truthfully, I actually need to protect myself from the one person I love with all my heart. It’s kind of tough, but there it is. If I can think of it as protecting myself from the demons that are eating them alive, that’s a better way to look at it. But it’s still very painful to watch them on that downward spiral, and be helpless to do anything about it.

Having extra days off can be good, but they can be be bad, too.

I just have to keep all this in mind and take the best care of myself that I can.

My head hurts. I’m foggy and dull… and a little bit afraid of bringing up the episode last night with my neuropsych. I’m afraid of what might happen if they tell me to go to the hospital and get checked out. But at the same time, if I don’t get the help I need, then what?

On the bright side, I’ve got almost four months’ worth of pay stashed in the bank, so if I do have to take some time off, I can. My mortgage is taken care of for the next month, and I’ve got enough to at least keep going, if I need to take some time.

Ideally, it won’t come to that. But when I think it through, the fact is, I can afford to take a week (even a month) off work, if I have to. I could even go to part-time for the short term, and we’d be okay for at least three or four months.

Anyway, speaking of work, I’ve got to get going. My fingers aren’t typing very well, and I’m fortunate to work with folks who have never seen me at my peak, so they have no idea just how impaired I am, right now. I’ll just get through the day, talk to my neuropsych, and try to keep as clear as possible, so I can make the right decisions and do the right things.

Main thing is to keep chilled out and cool. I’m really bummed out that I couldn’t even make it through a weekend with my spouse without yelling and getting upset. We were doing so well… that is, I was doing so well. They were doing really shitty. But all I can control is myself. So, I have to take care of what I can control — myself — as much as humanly possible.

Screw it. 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.

Just happy to be here

Uh oh – I just got back from a session with my neuropsych, and it appears that some of the “adventures” I’ve been having — some of which were really fun at the time and left me feeling energized afterwards — were actually caused by very poor decisions and a lousy ability to assess risk.

So, I’m actually lucky to be alive. Many, many, many things could have gone wrong on three separate occasions over the past six months. I realize that now.

Good grief.

Well, I’m pretty bushed after that session. It took a lot out of me.

I need to have some supper and go right to bed.

Later, all…

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.

Now past 250,000 views on this site

Thanks for listening Thanks for listening

I just checked my stats on this blog, and as of today, I’ve had 265, 363 views. I’ve been meaning to check my stats more frequently, because passing the 250,000 reader mark has been in the back of my mind.

But I forgot.

No surprises there. If I’d really wanted to remember, I should have written it down, but I have been pretty wrapped up in living my life, so I haven’t spent much time looking at web metrics.

By far, the most popular post was about how I slow my heart rate. Over 25,000 people have viewed that. Whether they read it or not, who knows? But it showed up in their browser. After that, it’s the piece about the vagus nerve. That’s been viewed almost 10,000 times. And after that, people get into the concussion and TBI writings, with a lot of interest in what I’ve written about anger. Whether they were interested in anger only, or anger plus TBI, is anybody’s guess.

But the bottom line is, there have been a lot of people stopping by, so thanks everyone for giving me a great reason to keep going with this blog.

I started this whole thing back in 2007 because I wanted a record of my recovery, and I wanted others like me who felt incredibly alone and isolated to have a place to come to hear someone else share about their experiences with TBI. Actually, it’s all pretty much about life as most of us experience it, TBI or no. My perspective just happens to include a “neurodiverse” aspect.

But then, all of us feel different and deficient in some ways, I guess. Not everyone has something to attribute it to, so in that respect, maybe I’m a little lucky.

Anyway, it’s another beautiful day, and I’m going to get myself outside and WALK. I had a good workout this morning — really pushed myself harder than I have in the past, and now my arms and shoulders and back are tired, which is good. I’ve been working on a bunch of different ideas that are all keeping me occupied and keeping my head from working against me.

I have really been struggling lately with these subtle feelings that I’m just not as “with it” as I’d like to be. I’ve been forgetting things at work, which depresses me to no end. But I can’t let it stop me. I have to keep a positive attitude and remember that everyone forgets things — the people I work with tell me all the time about how they forgot things. And they’re sharing the strategies that they use. My boss is highly experienced and has been doing very high-level work for a long time, and they gave me some great pointers. I’m really lucky to have them as a boss, that’s for sure.

But listen to me… going on, when I really should be out on my walk. I’ve got lots to do today, and I’m feeling good. Keeping busy with productive activities keeps my mind off this persistent feeling that I’m not “myself” and I’m lagging in some way. I’m actually re-building my life, bit by bit, and that includes my understanding of who I am and where I fit in the world. This is not small work.

But I’m doing it. Because it’s the one thing I can do to really help myself just get on with it.

So… onward.

Ups, downs, and everything in between

I’m feeling considerably better today… getting some sleep makes all the difference in the world. I have been pretty exhausted by the end of each day, and two nights ago, I got about 8 hours of sleep, which is always welcome. Last night I got about 7 hours, which is good, too.

Sure beats 5-1/2 hours, that’s for sure.

So, I have the day ahead of me. I just finished my workout with weights, and my arms and back are tired. That’s good. I need to push myself, physically. I haven’t done that for quite some time, for some reason. Just up on my head a lot, I guess.

But now that’s changed, and I’m on the good foot. Does this mean, though, that I will never have a down day, or I will never get sucked into a dark place?

Oh, no. The dark and the light go together. It’s just when one gets the upper hand and takes over the show, that things become a problem. If I can just let myself be, and let the feelings come and then pass, so much the better.

I’m still feeling pretty positive about my job. I am treating it like a form of rehab — no, not exactly rehab… more like a stepping stone to something greater. What that “greater” is, I will eventually find out, but I’m on a trajectory UP — with a few downs thrown in for good measure.

The project management work I’m doing now really suits me, and it’s the kind of work I realize I should have been doing for quite some time. I’ve long been frustrated by the way others managed projects, but for some reason, it never occurred to me to take on that role, myself. Of course, being a project manager is a little difficult if you don’t feel comfortable dealing with people or managing situations. It’s taken me a number of years to get past the conviction that I couldn’t talk to people, and I wasn’t any good at connecting with others. That’s not true at all, I see now (thanks to working with a neuropsych on a regular basis for the past 5 years). And now I can do my work.

The beauty part is, that old dread about my skills becoming obsolete is a complete non-issue now. Looking back, I realize that I was under constant pressure to keep up… keep up… keep up. Back in the day, that anxiety and pressure fueled me, but it took a toll. It felt like it was making me smarter and sharper, but the long-term effects of that kind of pressure were not good for my brain.

Looking back on my life, considering all the head injuries I’ve had, I’ve spent an awful lot of time in stressful jobs — because they were stressful. That fueled me — or so I thought. It was a constant source of adrenaline and pump. The thing is, ultimately, your brain pays the price for constant stress, and even though you feel sharper in the moment, you’re actually impairing your brain’s ability to learn new things and reason through more complicated issues.

Not many people know that — they think that the pump is all they need. But while we’re sorting through new situations and adapting to them, we also need to step back and let our brains and bodies integrate all the new information — your brain and body literally need to digest it all, just like you would a really big meal. If you’re running around in a state of mental indigestion, it doesn’t feel very good. And your life can’t change as positively and as effectively as it otherwise could.

It has taken me years for this reality to sink in. I’ve known it — intellectually — for a long time, but in practice, I haven’t been able to put it into action. I’ve stayed with the high-stress, high-pressure situations that made me feel sharper and kept a steady stream of stress hormones in my system. While I was in the midst of it, it felt normal. It felt natural. But now that I’m out of all that, I realize just how big a toll it took on me. It literally dulled me, made me feel worse, and dragged me down. And all the while I thought I was so alive…

This is a huge issue with me, and I feel like I need to recover from that long haul of stress and strain, so I can move into the next phase of my life. I just had a birthday, and in less than a year, I’ll be 50. It feels like there’s this imaginary line in the sand that I’ve moved across, and I need to gear up for the next half of my life — with all my faculties as intact as can be.

And I’ve been worried about the job situation, thinking that I wasn’t going to be able to hang in there. Justifiably so. Technology and programming and all sorts of esoteric details about how code works, are the kinds of things you need to constantly keep up with. But that doesn’t need to worry me, because I’m now in project management  — which is the kind of work that draws on the skills of many people, not just you. It’s also the kind of work where you can actually get better as you get older and more experienced. It’s not like the frantic rush of being a programmer, where you have to constantly keep your technical chops up to snuff, with the pressure to do your one specific job in a way that will never fail. What hell that was… I can see that now.

At this point in my life, I’m on a path that offers me some real long-term employment security. Good project managers are in very high demand, and the work really suits me, thanks to my background in design and authoring and programming. I can speak the language of just about everyone I talk to, and I enjoy working with them as much as they enjoy working with me.

Of course, I’ve been on the job about six weeks, so it’s early, yet. But I’ve known within weeks, in the past, if a job situation wasn’t going to be that great… and I have none of that sense right now. People at work are moving on, and there’s some turnover (because we’re going to be moving offices in the fall — closer to my home, actually). But the people who are moving on are folks I don’t actually “click” with, so it’s no biggie for me. I haven’t worked with them long enough for it to matter to me personally that they’re leaving.

So, it’s another day. Each day is a new opportunity to find out something new about myself and the world I’m in. I’ll have my ups and I’ll have my downs, but ultimately I’ll still have me.

And that’s pretty cool.

Onward.