Done worrying about stuff — for the time being

man and woman jumping for joy on a beach

It’s Friday. Woot.

Ha – that’s pretty much of an ingrained response, just one of my habits that usually serve me well. Today, I don’t actually have a lot of reason to say “Woot!”, because this day is no different than most of the days of the past week. I haven’t been working my a** off all week, so I don’t have a ton of reasons to be jumping for joy.

It’s another day. But come to think of it, that in itself is worth a “Woot!”

I’ve got some appointments this afternoon, and then we’ll get some Chinese food and watch a movie. Nice and drab. Boring is lovely. Not a lot of drama. Just taking care of business. Maybe I’ll have a nap later, probably I won’t. That’s fine. Because I’ve been catching up on my sleep, and I don’t have a very busy day today.

At all.


Yeah, thinking about my day, it’s pretty sweet. I have time this morning to catch up with some reading and writing, and just putter around the house. I’ll contemplate my life, think about the coming New Year, maybe take care of a few little things here and there, and get the ball rolling this afternoon.

Check the news… read some websites I’ve started following… and not worry about much at all.

And this is actually a slight change for me, since I’ve been a bit anxious over the past few days. Plans didn’t work out, or I got stir crazy, or I forgot to call people I promised to call… A while series of little annoyances set me off, and since all the Christmas activity wore me out more than I expected, the fatigue got the better of me.

But today is different. I’m just kind of hangin’ out. I’ll make those calls I forgot earlier, and I’ll go pick up the neighbor’s mail from their mailbox while they’re out of town for the next few days. Just get myself sorted and situated and settled. Enjoy the day, don’t make a big deal out of stuff… just kind of roll along and listen to some music I love. It’s not every day I get the chance to just chill out, so I’m taking advantage.

Looking back on the last year, I see I’ve spent way too much time worrying about stuff. For sure. It worked itself out, even though I was so focused on individual details — losing sight of the big picture, and getting swamped in minutiae. Maybe it’s just me getting older… maybe it’s looking back with hindsight (not exactly 20/20, but close)… maybe it’s just a shift in my priorities and interests… but I’m a lot less concerned with stuff outside my immediate control, than I used to be.

There’s only so much I can control or influence. I can certainly try, but my abilities are, of course, human, so…

The best thing to do is really take care of myself and figure out how I can make stuff work for myself. The rest of the world will figure itself out. Or it won’t. Either way, my life goes on.

And on.

And on.



Tending to my present… Kick-starting my future

road leading into the distance, with country landscape surrounding it

Well, that sounds dramatic. And I suppose it is.

Taking care of the present sounds so formal. It seems common-sense. And I suppose it is. But we live in a non-sensical world, these days, so it’s a lot more difficult than it seems like it should be.

Kick-starting my future is something I do — or don’t do — each day, with every choice I make. It’s a lot simpler than it sounds, and it’s a lot more complicated than it seems.

The thing is, we do this each and every day with the choices we make. We define our lives by our choices, and we further our plans with our actions. It’s not mysterious, it’s not magical. One thing leads to another, then another, then another. And all along the way, we have the chance to change direction, even slightly.

If you’ve ever thrown a ball, you know how wide of the mark you can go, if you alter the angle of your arm just a little bit. The same is true of our lives. One slight change in “angle”, and you can end up in a very different place than you originally intended.

A “little” slip on some stairs… a “minor” bump on the head… and your life can change in that instant. You can find yourself waking up each day, not knowing where you are, exactly, or where you want to go. Or you may wake up each morning wondering why the heck you didn’t get to where you were going the day before.

The brain is an amazing thing, and it’s surprisingly easy to disrupt in life-altering ways. We constantly take it for granted, like electricity or hot-and-cold running water. They’re all supposed to just work, just be there. And when they don’t… when they’re not there, we’re thrown into a state of chaos and confusion that blocks our ability to deal with anything.

The thing is, we tend to get stuck at that place of chaos and confusion. Perhaps because brain injury “rehab” is big business, with plenty of facilities billing plenty of hours to insurance companies, we don’t see a wholesale rush towards figuring out brain injury the way we should have long ago. Too many facilities make their money from people in need of help, rather than getting people back on their feet, never to need them again, so where’s the impetus to properly serve the brain-injured population? There are lot of us, with over a million TBIs added to our numbers, each year in the United States, alone, so I’d expect someone, somewhere to figure out how to end the suffering and teach people how to get back on their feet.

But no.

Well, never mind. Because there’s nothing I can do about that. What I can do is share my own experiences for everyone who’s interested in actually doing something about their situation, rather than staying stuck in something that can actually get fixed.

We all need a good dose of reality, when it comes to brain injury. That goes for health care providers, as well as those of us who get hurt. The brain is highly vulnerable. And the ways it’s most likely to get hurt are ways that hit us where it hurts the most — in our executive functioning, in our ability to plan and follow through, in our accustomed patterns that fall apart and plunge us into a steady state of anxiety… which builds up over time and impairs our ability to heal over the long term.

When we understand the true nature of brain injury (and don’t just get caught up in recycled notions that came from investigations done back in the infancy of brain research), we can also see that it is survivable.

We can — and do — recover from brain injury.

No one can take that from us. No one. Not any of the “experts”, not any of the scientists or neuropsychologists or psychiatrists.

The thing is, “recovery” means more than just restoring prior functionality to the injured brain. ‘Cause people, once the connections in your brain are disrupted, they stay that way. You can’t rewire broken connections. But we can — and do — create new connections that may function a little differently, but are still every bit as useful (sometimes more useful) than the old ones. And ironically, in my case, I find that some of my new connections are much, much better than my old ones, because I formed them with more life experience than before.

What we’re recovering is our personhood. Our dignity. Our self-respect. Our individuality. I think the brain injury rehab industry lacks an understanding of how much more important that is, than any level of physical or cognitive processing. People get hurt all the time. We break bones. We get cut up. We get smashed and smooshed and crushed. And then we recover. We may not have full range of use after we heal, but we get on with our lives. We may limp along or not be able to reach over our heads to get stuff or have to stop shoveling our own snow, but that doesn’t keep us from living our lives.

Same thing with brain injury. We may not restore our brains to their former glory, but we can adapt. Losing certain brain functionality is not the problem with TBI recovery. It’s losing our Sense-Of-Self that does a number on us. It’s the panic that sets in when we find ourselves doing things that are “unlike us”. It’s the repeated little shocks of being surprised by one thing after another that didn’t used to surprise us. It’s the gradual disappearance of our friends and family who used to know us as one person, but can’t adjust to the new person we’ve become. That loss of the Self, that erosion of security about who we are… that’s the biggest hurdle to overcome with TBI.

Because if you don’t deal with that, your functional recovery is going to lag. Brain injury recovery is a re-learning process. It’s all about re-training the brain. And if you’re totally stressed out over everything, you can’t learn properly.

It’s that simple. And it’s that complex.

And it doesn’t need to be the big-a** mystery that we make it out to be, because it has to do with the braaaaiiinnnn.

Brain injury recovery is a matter of living your life. Learning to live your  life. Teaching yourself how to get on with things, when everything looks different, feels foreign, and doesn’t square with how everything used to be.

It’s about choice. Action. Reaction. Learning. Adapting.

And when we tend to our present, choosing to learn from each and every conscious moment, we move ourselves towards a future of our own making.

As the current year winds down and the new year approaches, I hope you can own that, yourself, and — whether your brain is injured or not — take responsibility for a future you can absolutely positively make up as you go along.

Looking back, looking ahead… and trying to get some sleep in the meantime

rowboat at docks

I have been meaning to get more sleep, during this vacation. I’m able to take naps in the afternoon, which is great. I just can’t seem to get to sleep at a decent hour (before 11:00 p.m.) Part of the problem is that I just don’t want to go to sleep earlier than 11:00. I’ve got an internal clock that tells me when it’s time to sleep, and it generally doesn’t kick in till 10:45 or so.

It’s a little nerve-wracking. But I do it to myself, putting all kinds of pressure on myself to go to sleep, when I’m not really feeling that tired. And then getting up at my regular time, which lately has been anywhere between 5 a.m. and 6:30 a.m. So, I’m not always getting a full 7.5 – 8 hours, like I need to. And then I wake up irritated, because I can’t sleep through.

It’s an ongoing problem, especially during this vacation.

Well, my life is structured very differently now than it is when I’m working. I’m still doing my morning exercise, which is crucial. I’m actually doing  better with it than usual — getting both my bike ride and the weight lifting done. I just don’t move enough during the day. I move more, when I’m at the office, because, well, I’m at the office. I have to go to meetings. I have to get my lunch on the ground floor. I have to make trips to the water cooler as well as the restroom. It gets me up and around, while being at home — where everything is within easy access and just a few steps away — keeps me sedentary. Heck, I can even work while sitting/lying on the sofa, which sounds great, but is a bit of an occupational hazard.

Anyway, it’s the end of the year, and I’m kind of out of sorts. Feeling like I’m drifting, cut loose from my moorings a bit… feeling like I fell asleep in a rowboat that was tied to a dock, and then I woke up finding myself drifting out in the ocean, with the dock in the distance. The thing is, although the distant docks look familiar, and that’s where I expected to wake up, I can also see other sights in the distance.

Cities I didn’t know existed before.

Distant piers and jetties that look every bit as interesting as what I’ve known before.

Busy industrial ports that hold mysteries within their iron fortresses

And secluded beaches to explore.

Different sorts of places where people live, work, and go about their business, which are both foreign and fascinating to me.

And lighthouses to guide me along the way.

Lights… sights… sounds… And a whole world of choices out there.

When I actually have some time to catch up with myself, I can see so many more possibilities. And it’s invigorating.

But it’s also a little depressing. Because I spend so much of my time in recovery mode, just trying to right myself in the very wrong world, that I don’t have as much time as I’d like to just kick back and relax into finding out What’s Next.

I look around me at my life… And I see so much more beyond my present situation. And I also see that the resources I have at my disposal are, well, limited. I’m not complaining. I’m just saying. I don’t have all the energy in the world, and I don’t have all the patience to match it. I want to cut to the chase and get on with my life, to the best of my ability. And after all these years of really working on my TBI recovery and firming up my Sense-Of-Self, I’m finally at a point where I have a reliable idea of how “I” am going to react and behave under certain circumstances.

That’s the biggest, hairiest, most dangerous part of life after TBI — losing your Sense-Of-Self. It erodes your self-confidence. It crushes your self-respect. It makes every situation into a danger-fraught series of surprises that threaten everything you care about. And then the real trauma of TBI sets in.

I really believe that the biggest trauma in mild traumatic brain injury comes after the injury itself. There’s a steady stream of “micro-traumas” which stress out our systems and add to the fight-flight biochemical load. And unless we learn how to manage our fight-flight overload and learn how to clear out the neurochemical gunk of all that ongoing stress, mild TBI continues to take its toll. It continues to haunt us, to tax us, to load us up with invisible burdens that nobody else understands, but which are very, very real.

If you really understand the physiology of trauma (and not a lot of people know about it, let alone understand and fully appreciate it), and you understand the profound change that even a “mild” TBI brings to your entire system, all of this makes sense. You know that the subtle changes to how your system works are disorienting and anxiety-producing. You know that the body’s mechanisms for protecting itself are working overtime post-TBI, and they’re kicking in, in the most unlikely of situations. You know that the overall effect builds up, and you know that it’s cumulative.

You also know that while the effects may show up as a psychological disorder, the underlying basis is a combination of mind and body — and the body bears the burden of it all.

The thing about this whole deal is, because the body is involved, it’s possible to work with the body to turn that sh*t around. Even if your mind feels like mush (I’ve been there), even if you can’t remember what you did, just a few hours before (I know the feeling well), even if you can’t get through your morning without a detailed checklist (the story of my life for years), the body can act as a gateway to recovery.

Regular exercise helps stabilize your system. Eating the right foods (and steering clear of the wrong ones) helps your metabolism stay stable and keeps you off the blood sugar roller-coaster. Getting enough sleep lets the brain “knit itself back together”, as well as clear out the gunk that builds up, just as a result of everyday living. Plus, learning to regulate your heart rate and your blood pressure can train your overall system to get back to a stable state, even if everything feels like it’s falling apart around you.

I’m sipping the last little bit of my half-cup of coffee, as I write this. The snow from last night is giving way to freezing rain, which will fall until midday, when the temperatures start to rise, and regular rain falls. There’s always a chance that the ice buildup will take out our power, and that’s no fun. But I have wood for a fire in the fireplace, and we’ve been keeping the house pretty warm, so we’ll have some residual heat to see us through. In the past, we’ve had some pretty hair-raising experiences with losing power, and I don’t look forward to repeating them.

But I know a lot more now about keeping my physical system stable, and I’m in a much better place, mentally, than I’ve been in past years. So, I’m at much less risk than before. And knowing that relieves the pressure and also reduces the risk of my “losing it” even moreso. And that’s good. It’s awesome.

So, where was I… I’m kind of meandering, this morning, as I try to get my bearings. I’m looking back at the last year, wondering if all the effort really paid off the way I wanted it to. I’m not sure it has. Some things I started have kind of stalled. And other things I wanted to continue with have floundered, as well. In some ways, I’ve been as diligent as ever. In my day job, for example, I’ve been invested and involved in ways that have actually paid off. When I think of all the other jobs I screwed up since 2004 (and even before that), it’s kind of depressing.

So, I won’t think about them. I’ll focus on the good.

And as I look forward to my future, I see a much simpler — but much more do-able — path ahead. I’ve let go of a lot of old activities that were busy-work I picked up for the sake of pumping up my tonic arousal (the state of wakefulness in your brain) and getting my system turned “ON”. I had a handful of websites I wanted to start, a number of business ventures that seemed promising, apps I wanted to build, and novels I wanted to write. That extended experiment in busy-ness went on for 10 years or so, and it just didn’t work out, so I’ve now narrowed my focus to a few particular activities, which will actually lead somewhere.

Heck, they’ve already started to pay off. And taking the pressure off myself to go find another job… yeah, I’ve let that one go. Yes, traveling for work every few months really takes it out of me, but there’s no guarantee the next job won’t be just as much of a pain in the ass. Plus, it’s too stressful to go changing jobs every few years. I used to thrive on that experience, but now it’s just a pain in the ass. I need to look for the good in things and tweak the things that I’ve got going on… not ditch them and go looking for something better, somewhere else.

So, I guess I’ll wrap up my ramble. My morning is in free-flow, so I’m just letting my mind wander as it will, for the time being. I got my grocery shopping done yesterday. I got my meals for today prepared yesterday, too. I can’t go out and do anything, because the roads are bad. There’s no need to go anywhere, anyway. I’ll just hang out for the day… drift… make a fire, perhaps, and catch up on my reading.

And write a bit more. Because I can. I’ve got the time and the opportunity. So, yeah…


Well, why didn’t they just SAY so?

People need to talk so others can understand
People need to explain things so others can understand

When I was a little kid, I had trouble hearing. I could pick up a full range of volume just fine, according to the tests they gave me, but I had a hard time distinguishing between sounds.

“S” sounded like “F” and the soft “TH” to me.

“B” sounded like “V” to me.

Unless I saw a word written out, it was sometimes hard for me to understand precisely what was meant. Based on what I heard, it could have meant anything, really.

I was also a very literal child, who didn’t “get” the whole slang thing. That 1970s song “Convoy”, which was an extended conversation between truckers using their trucking slang, was pretty interesting for me to listen to. I had all sorts of unusual ideas about what exactly was going on there, and when my mother asked me if I knew what the song was about, I said, “Sure! It’s about truckers going bear hunting!”

She gave me a strange look that made me think I was probably wrong — and sure enough, the “hunting bear” reference was really about truckers doing battle with the highway patrol.

I also had a lot of disagreements about what people were talking about and what they were saying to me. I got my letters mixed up, because they all sounded the same to me, and I made up my own (stubborn) mind about what words should be used — and how.

I remember one time I had a pitched battle with my mother, who told me that the name of one of my school friends was “Valerie” — with a “V”.  I heard “Balerie” — with a “B”. Never in my life had I heard her name pronounced with a “V” sound, so being the stubborn kid I was, I argued for quite some time and got very, very angry, that my mother had it wrong.

She kept repeating “Valerie… Valerie… Valerie”, drawing a “V” in the air with her finger, and I got angrier and angrier.

Because that wasn’t what I experienced. It wasn’t what I heard.

I also had trouble pronouncing words. I had a “lisp” when I was little, partly because I didn’t realize you had to form “F”, “TH” (the soft one), and “S” differently with your mouth. I thought they were all the same sound, so I picked the one that was the easiest for me to tolerate.

Part of the issue was that I had trouble with my ears — they were so hyper-acute, the sound of an “S” literally hurt them. It was painful to pronounce “S”, so I tried to soften it, like a “TH”. And of course, that was wrong, so I was in speech therapy for some time, to try to correct it.

That was rough. They took me out of my regular classes, and not only was everyone staring at me, but then they walked me through the halls of the massive school that seemed so cavernous and vast to me. I could never remember how to get there, and I got lost a number of times. People got upset with me, because apparently it was easy to get to the speech therapist’s office. Easy for everyone else. I got turned around and couldn’t find my way. And the speech therapist had to keep coming to my classroom to show me the way.

So, I figured I must be an idiot.  Such a simple thing … and it was so hard for me. There must have been something really wrong with me.

I also couldn’t makethe sounds right. The speech therapist kept trying to get me to sound out the sounds, but I couldn’t do it. I couldn’t tell that there was a difference between them, and try as I might, I couldn’t make the connection between what they were telling me to say, and what I could/did say. It all sounded the same to me, and nobody explained to me the way to shape the sounds in my mouth, so I could say them correctly.

After some time trying to work with me, the speech therapist gave up. They may have suspected I just wasn’t trying. Or they couldn’t justify spending any more time with me, because I wasn’t making any progress. They may have also believed I was deliberately being difficult.

There were a lot of things that were pretty challenging for me, which I “should” have been able to do. But I couldn’t. And nobody seemed to know how to help me.

What really would have helped, is if someone had just told me that you shape words different ways with your mouth. Everybody seemed to take for granted, that everyone knows that. But looking at someone’s mouth from a distance, you cannot see the position of their tongue or their teeth or even the subtle differences in their lips. “B” looked pretty much like “V” to me. And even though “TH”, “S”, and “F” look different from a distance, I could not tell the difference in the sounds, so I could never tell if I was saying it correctly.

So, I went with the sound that was the least painful — the “TH”.

Eventually, it dawned on me that sounds were shaped differently, and if I just formed them properly, even if it didn’t sound right to me, others would get it. I have no idea if I reached this conclusion myself, or if it finally sank in, after I was on my own and the lessons of the speech therapist finally sank in with me. I used to think I figured it out by myself, but now I think it could have been a delayed realization.

In retrospect, it would have been really helpful, if someone had just sat me down and explained to me slowly and carefully, in very clear and logical terms, that words and sounds were produced with certain positions of lips, tongue, and teeth. And have me practice making those sounds with my mouth. Even if I couldn’t hear the sounds properly, I could know that I was forming the words correctly, so others would understand me. Even if I didn’t get it, at least someone would. And 1 out of 2 is better than 0 for 2.

Then again, they may have tried. But I was a tough case. I had trouble paying attention. If people didn’t explain to me why we were doing something, I lost interest. I was also overwhelmed and stressed from the walk to the speech therapist’s office, so that made it hard to concentrate. Plus, I didn’t know why I wasn’t getting it. I just didn’t know. And neither did they, apparently.

The whole speech and articulation thing just messed with my head when I was little — to the point that I started hyper-articulating things, and I became pretty OCD about making sure I was pronouncing words exactly right. It’s one of the reasons I can pronounce foreign words pretty well and also simulate a non-English accent pretty well. I get extremely nervous if I don’t pronounce something right. It’s a visceral reaction to past bad experiences, I guess.

As a kid, I had so many failed interactions, thanks to my speech and comprehension difficulties. On my first day at kindergarten, I couldn’t articulate to the teachers what my address was, so they couldn’t put me on the right bus. And after my first day of school, ever, when my mother was waiting at the bus stop, her firstborn was nowhere to be found. The school called to tell her they were giving me a ride home, but my mother almost lost it when I didn’t get off the bus.

I had lots of trouble with kids at school, too. I tried to talk, but I couldn’t seem to make myself understood. I felt like I was babbling into the wind, and it might have sounded that way to them, too.

Ultimately, when I could read books, I turned to them for company. That was enough. It was more than enough for me. Books didn’t make fun of me, they didn’t look at me strangely, they didn’t correct me, they didn’t test me to see if I got it. They were just there, waiting to impart their knowledge. Of course they never told me how to pronounce the big words that I found there (I thought rendezvous was pronounced renn-dezz-vus, until my dad told me otherwise), but then, that never mattered, because I had the meaning in my head.

I swear, I really don’t know what is up with people who can’t be direct and just come right out and tell people what the deal is. Hinting around and intimating makes me nuts.  It drove me nuts as a kid, and it still does today.

If I’m messing up, just tell me. I’ve done it before, and I’ll do it again. And it’s a heck of a lot easier to deal with, when you have direct information, rather than trying to “go easy” on me. Easy is hard. Direct is simpler.

Don’t make me guess — just tell me what the deal is.

And then I’ll deal.

Always a “new normal” on the horizon

Looking over the horizon. (Image from ad.)
Looking over the horizon. (Image from ad.)

I’ve been thinking a lot about the changes we all go through in the course of our lives. Especially in context of TBI / concussion, we are routinely forced by circumstances to create a new understanding of ourselves and our world.

When you’re dealing with a life-altering event, such as the loss of a loved-one, a new job, a change or loss of residence, or a sudden illness, you need to find new ways to understand your life and your place in it. In some cases, you need to reconstruct or replace what you lost.  In other cases, there’s no way to replace what’s gone away.

Things and money can be replaced, but people and the things we love most… well, once they are gone, we may literally need to reconstruct our lives in many ways, large and small, to make sense of our lives again.

In thinking about what we lose in TBI / concussion, we can lose not only our “self”, but also the sense of who we are — our Sense-Of-Self. It’s disorienting, distressing, traumatic. Walking through life without a clear sense of yourself and who you are or where you belong… maybe not even having a clear sense of familiarity with many of the things you used to take for granted… it’s tough. And it brings its own sort of trauma with it.

On my Saturday morning hike this morning, it occurred to me that one of the things that makes this so difficult, is the rigidity that often comes with TBI. Check out Stuck in a Thought Tunnel: Rigidity after Brain Injury for a great discussion of this. Here’s an excerpt from that blog post:

What is Rigidity after Brain Injury?

Imagine you wear blinkers that prevent you from seeing to either side of you.

This is what rigidity can look like – blinkers keep you following a line without being able to take in other information around you.

The difficulty with rigidity is that it is easily mistaken for more deliberate acts. It may be thought of as stubbornness, being obstructive, being stuck in a rut, or bloody-mindedness.

Inflexibility or Rigidity after brain injury, from any cause, means you are not able to adjust your thoughts or actions in response to changes that happen to you, or in your environment.

Rigidity after brain injury is not deliberate, it is an outcome of the damage to brain cells.

So, brain injury can make you stubborn, narrow-minded, brittle, inflexible, and give you tunnel-vision. And that’s a tough place to be in, when you need to be flexible to re-learn about your life post-injury.

In my mind, brain injury recovery is all about learning — our brains need to re-learn how to do things (often simple, everyday things), our bodies may need to re-learn how to move and function. We may need specialized training in things that used to be so simple for us, because the connections of our brains that used to run those things have been bumped out of place, like power cords being bumped out of their respective sockets.

Anyone who’s ever been vacuuming and accidentally pulled the cord out of the wall, knows a little bit of what it’s like to have a brain injury. One minute you’re ON, the next, you’re running out of power… and you’re OFF.

The thing with all this learning and re-learning is, it’s nothing new for our systems. We are constantly learning, constantly re-learning. Every waking moment, we are primed to learn, to take information about our world, and then put it to practical use. When we look at the weather and memorize the hourly forecast for Saturday, we are learning. When we meet someone new and they tell us their name and something about them, we are learning. When we read something new online and then share and discuss it with our friends, we are learning.

Learning is nothing new. We are built to learn.

Likewise, creating “new normals” is also nothing new. Every time something different happens in our lives and we adjust to it, we are creating a new normal. We begin to date someone we just met. We keep dating, and they become part of our lives. New normal. We decide to move in together, or to get married. Transitions ensue. Adjustments. New normal. Maybe we have kids. Or we get a dog or some cats or a bird. We have to rearrange our lives around our new dependents. New normal.

In the course of our lives, things are constantly changing. People and jobs and situations come in and out of our environment… one new normal after another. We get used to things being a certain way, then they change without our expecting. New normal. We are always, always re-inventing ourselves. Creating new normals is really nothing new.

Now, if you throw TBI into the mix, it gets interesting. Rigid thinking rises up and bites us in the ass. We get scared. We resist. We don’t want to do things a new way, because we think the old way is just fine. Well, maybe it is. But we may need to re-learn how to do it all over again. And we may find ourselves slipping up, here and there, trying to rely on old habits that no longer serve.

Kind of like how a widowed spouse will start talking to their “other half”, realizing too late that they’re gone. And they are alone in the house.

A new normal needs to develop. It’s not always welcome, but it needs to be created.

The point of all this is that when it comes to brain injury recovery, we as human beings actually know how to do it. We know how to learn. We know how to adjust. We do it all the time. We just get stuck in our foggy-thinking ways of resistance and not seeing clearly what needs to change. We get scared — and that’s normal. At the same time, if we stay scared and let it run our lives, we miss out on the chance to find out what else is possible for us in the big, wide world we call home.

New normal is not the enemy. Nor is it anything particularly new. It’s just what we do.


A productive weekend, even so

How could I pass up this?

Well, most of what I planned to do over the weekend did not happen. I had every intention of finishing my taxes, which I started weeks ago, but that was not to be.

Instead, I spent Saturday working on a programming problem that still had me stumped by the end of the day. It soaked up the entire day and rendered me distracted and confused and frustrated, and I was only a few steps closer to a resolution, when all was said and done.

On the bright side, it became incredibly clear to me that programming as a way to make a living is NOT what I want, anymore. I want to design programs, not code them up. And this is something I can do, for sure.

This is really good news because I got an amazing idea over the weekend, which I think has a lot of potential, and it’s something I can pretty easily document and hand off to a capable developer to create. If I insist on doing the coding myself, it will only slow me down. But this is the sort of thing a really capable programmer could “bang out” in short order.

So, I’m pretty psyched about that.

I have been getting in my way with so many things, mainly because I have been rigid and hard-headed and haven’t been willing to entertain other possibilities — or let go of old things that no longer fit me.

But after a full day of focusing on the computer screen, trying to solve one little problem that had me hung up all day, it’s pretty clear that I don’t want to do that anymore. I ended up sore and stiff and feeling like I’d been trampled by elephants. Plus, I spent a full day off — which was beautiful — inside, staring at a computer.

No thank you.

Saturday evening, I made up for that and went for a long walk in the woods. Saw a herd of 12 deer. Got some good exercise. Unwound.

Sunday I turned the tables and started the day with a walk, then did yard work for about four hours. Got a lot done. Wore myself out. Took a long nap. Got up and went for a ride with my spouse, to get some fresh air and just hang out. We’ve both been working really hard, and we needed some “away time”. And we got it. It was really nice to just get out of the house together and relax.

Last night, we had supper, watched some television, and then I trundled off to bed. I briefly took a look at my taxes, but the weekend was mine, and I wanted to just enjoy myself. I would have made better use of my time working on taxes Saturday, than getting stuck on that programming problem, but that didn’t happen.

The thing is, I hate using my free time off for drudge work. The kind of drudge work I had to do, is really best broken up into chunks of time — focusing in for only a few hours, instead of a full day. I really need my time off, to do what I please, when I please, and concentrate on the things that I want to do. I spend my weeks taking care of other people’s business. The weekends are mine. And I have a hell of a time relinquishing them for anyone — especially for something like taxes.

So now I need to finish up my filings in the next two days. It’s no big deal, because I am 80% done. It’s just that extra 20% that has me stumped. I figure I have tonight and tomorrow night — and possibly Wednesday morning — to do them, so that gives me plenty of time. I’ll go into work early today and tomorrow, so I have at least 4 hours each night to devote to them. That is more than enough time, actually, so I’m not really worried. It’s just a thing I need to get done with 100% focus.

Yes, getting my workdays out of the way and having free time in the evenings is the right way to go. And after my taxes are done, I will focus on my new project, getting the documentation together so I can find a programmer. I had a really great weekend, even though it didn’t turn out the way I wanted.

It’s all good.


It’s all temporary

Something occurred to me yesterday that has the potential to make me as happy as it makes me sad : It’s all temporary.

I mean, I know that everything passes,and I know that everything really is temporary, but I tend to get caught up in the problem of the moment, and I lose sight of the fact that everything changes in one way or another. Nothing stays one way for long.

But I get so caught up in my rigidity and my literalism,I lose sight of that fact. I’ve been very rigid, this winter, having it in my head that I need to do certain things or else, and I have let a lot of stuff slide, as a result. I’ve been so focused on a small set of activities, that I haven’t actually taken time to A) fix things around the house I should be fixing and B) simply enjoy myself and get out and about like I try to do year-round.

I don’t have any excuse. I just got so caught up in what I was doing, I lost track of everything else.

I think I know what causes me to get stuck – the fact that everything truly is temporary, including my memory. And I don’t want to lose the progress I’ve made.I tend to lose track of where I am, if I get pulled away to do something different, and I really wanted to finish the projects I started in late fall.I kept getting distracted, kept getting pulled off in million different directions, and I wasn’t making the kind of progress I needed to make.

So I decided to block everything out and just ONLY do that one thing, until it was done.

That meant I blocked out just about everything else, except for the basics, like getting up and going to work, eating and sleeping.

Now I’m dealing with some house issues that are a real problem. I’ve got some water leaks in the system that continue to cause problems, and the house is getting a musty smell. Also, with the car situation, I let some things slide, and now I’m scrambling to catch up.

Making calls. Figuring out how much money I have to spend. Getting my numbers together and figuring out my schedule. Just taking it a piece at a time, doing what I can, when I can.

I just need to not get stuck … everything is temporary, including the problems I have. Other people have surmounted worse.

I just need to keep going, keep thinking, and stay flexible as best I can.


More reading on flexibility and rigidity and TBI:

Reset NOW

I just came across this video – pretty inspiring

No matter what people may offer you, if it means you have to sacrifice yourself or abandon your convictions, no way no how is it worth it.

Back from my trip to see my family, I am reminded yet again of why I left. The price of admission to the community my family is part of, is way too high. You have to abandon your individuality to be part of a larger group, and that doesn’t sit right with me. My siblings have all pretty much kept the continuity going, living their lives as my parents expected them to — with a few minor exceptions, here and there. I’m the black sheep. I have broken out. And looking at how things have developed, back there, I’m so thankful I stepped away when I did, and managed to keep my individuality intact.

My family and their community have specific ways of doing things that they believe are correct and right. Everything from how you tend your garden, to how you maintain your home, to how you walk and talk, and when you light the first wood fire of the year, are watched and commented upon by the neighbors. Almost every aspect of life is dictated by a combination of religion and tradition, and those who “buck the system” are not welcome. Tolerated, but not warmly welcomed.

And while that rigidity gives them a sense of continuity and comfort, it doesn’t leave a lot of room for growth and positive change — unless that growth and positive change is part of their world view.

If there is a problem in front of them that can’t be solved by the same old thinking, then that problem stays stuck.

Like the problem of the hoarder in the family that nobody ever talked about. And nobody could ever help.

Hoarding is a complex issue, and it has a lot of different aspects and causes. There’s the perfectionism, the personalization of objects, the inability to let things go, because of the emotional connection to them, the inability to see a problem (on the part of the hoarder), and the inability to creatively think about options and choices for how to live differently.

I never realized, till this last weekend, just how badly off “our hoarder” was. Nobody ever talked about it in depth, nobody ever took steps to address it directly. The standard response was through prayer and support and trying to talk sense into the hoarder — and to model a better way to be.

Nobody ever addressed the neurological issues they had — which are obvious and several — and nobody ever addressed this in a systematic, scientific way.

What a friggin’ waste of a life. “Our hoarder” is well into their 70’s, and they have lived in the midst of their own filth for some 30 years. And I never fully realized the extent of the issues. Had I known, I might have been able to do something. But now the past is done. The wrecked house has been cleaned out. And “our hoarder” is in a retirement home, where it is literally impossible for them to collect any more crap or allow their space to become trashed. Cleaning folks come in every week like clockwork. So, with any luck, the will get the help they needed all along.

30 years have gone by, leading up to this moment, and my relative has lived in their squalor all that time, unbeknownst to me. I have never been in a position to actually help them before, because I had so many issues of my own. And now that I am on my feet again with a much more robust set of tools and skills, I am in a position to help. But their situation has changed, and help with that part of their life isn’t necessarily needed anymore. At least from me.

There is literally only so much I can do for my own family. They are set in their ways, and I’m not sure they will be able to change. Outside my own family, however, I can do some things. Like living my life to the fullest, showing others how hope is possible, and keeping the faith each day in my own way.  I can reach out when and where it’s possible, and hope that I have a positive influence. I wish it were possible for my own family, but sometimes it’s just not possible.

So, I do what I can, where and when and how I can. And do my best to not take responsibility for others’ choices and actions.

You can’t save everyone.

But you can save yourself.

And it’s time for a little reset in my life — to take what I’ve learned from the past week, and put it into positive action in my present and coming weeks, months, and years. I need to sleep… and hope that my system will “integrate” the info from the past days into something useful in the future.

No sense in letting all the lessons go to waste, right?

Okay, time for a nap.

Taking good care of myself


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.

Learning along the way

Getting back to my regular life is hitting me, about now. Thank heavens it’s a long weekend. If I had to go to work tomorrow, I’m not sure what I’d do.

No, I know what I’d do. I’d go to work. Because that’s what I do.

I’m really feeling the effects of jet lag, right about now. Yesterday was a really challenging day, because I was starting to really get hit hard by the fatigue, the change of time zones, the change of pacing to my everyday life. I can function, absolutely. But it knocks the stuffing out of me, for sure.

Not that it stopped me, yesterday. I had a really good, fully day, actually. I did a lot of cleanup around the house, and I spent about 4 hours helping my spouse pack for a short business trip that they needed a lot of supplies and equipment for. It seemed to me that the amount of work going into preparation far exceeded they payoff, but from what I hear, the trip was a success and many of the goals were accomplished, so maybe it was worth it, after all.

I started to seriously run out of steam around noontime yesterday. That was with 2-1/2 hours of intense preparation still to go. I had been going since 10:00, and I was beat. I just wanted to lie down. Crash. But I kept going. I focused on what needed to be done, and I did it. And I didn’t get all caught up in my resentments and tiredness and anxiety and frustration about being back from a really demanding trip and having to do even more work for someone else — work that had nothing to do with me, really, but that I had to help happen, or it wasn’t going to happen at all.

In the past, I have gotten dragged down in that thinking, and that head trip just pulls all my energy away from what really matters and what’s most important. The important thing is to just get things done, just do the job, just get everything squared away, as only I can. I can’t let anger and resentment and fatigue get the upper hand. I just have to buckle down and push on.

Which is what I did yesterday. And even though I was even more beat, by the time I was done, I actually felt really good about it. I had gotten a ton of exercise, after a relatively sedentary trip. And I had definitely gotten the blood pumping, which I’ve been needing. All the activity got me out into the day, doing something constructive, and it got me moving in my own space, at my own home, on my own turf.

Which was nice. Because I have really missed my home, while traveling. I miss my schedule, I miss my own bed, I miss my routine. I am such a creature of habit, that when I have to turn everything upside-down, it turns me upside-down, as well. Finding my balance again, during and after travel… well, that’s a challenge. But I’m learning better all the time about how to do this thing.

After all, it really is a learning experience. I’m learning how to handle things better and better. I’m developing new skills in adapting and finding opportunity that I can make the most of. And I’m acclimating to the idea that all of life around me is really a classroom I report to each and every day. I have to go to class, but it’s my choice how much I engage, and what I learn along the way.

I tend to think about change with a mixture of dread and hostility. Because it’s threatening my way of thinking and living and my sense of self. I have never been a fan of change, but I think that’s because I always saw it as something that either happened to me or was done to me. “Change” is something I usually think of as separate from me. It’s a set of circumstances beyond my control that I have to adapt to, or else.

Change has long been a sword of Damocles hanging over my head, suspended by a very thin thread, with no guarantee that I’ll be able to successfully adapt to it.

That’s not been particularly helpful to me in my life. It’s made me brittle and rigid and inflexible, and it’s helped make me a lot less happy than I could have been, all these years.

But in fact, when I think about it, change is really nothing more than a learning experience. It’s just a shifting set of conditions that we can learn to maneuver through, just as we’d learn to drive a car or ride a bike. Driving a car and riding a bike are two things many of us learn to do, as a matter of course in our lives. And there are a ton of other things we need to learn, in order to be happy and productive in the world.

We don’t kick and fight and scream about learning to do those things — like ride a bike and drive a car and read and write and (some of us) swim. We go through the steps we need to take, to learn to do them, and some of us learn to do them better than others. Some just show up and put in the minimum required effort and come away with some modicum of ability. Others really apply themselves and think long and hard about the best way of doing things and develop mad skills that put others to shame. In any case, it’s up to us, what level of effort and attention we put into mastering our new skills. Even those who struggle to learn and adapt, can find ways to do so — or find compensatory techniques to aid them in the absence of innate ability.

The same is true of the changes that take place in our lives and our circumstances. We have to re-train ourselves and our minds. We have to learn how to do different things in established ways, or do old things in new and different ways. We have to acquire new skills and perspectives that help us make sense of our circumstances. We have to learn what doesn’t work, as well — what holds us back and drains our energy.

In any case, it’s all learning. It’s identifying new patterns and developing new ways of dealing with them successfully. The changes we face are not life conspiring against us to make us miserable. They’re not a plot by some nefarious foe who seeks to do us harm (well, sometimes it is, but it’s not very productive to dwell on that — fixating on that just takes up more time and energy, which makes it harder to come up with new and different approaches). They’re opportunities to reset our mindset and develop new abilities that make us more complete human beings.

So, that being said, I have a lot I need to learn and re-learn, these days. The big lesson at this moment right now, is how to deal with jet lag. I think I’m dealing with it pretty well, but I feel terrible in the process. I’m functional and I’m able to work pretty well, but I feel like crap, which is a real challenge for my frame of mind. Maybe I just need to expect this, and plan for it. Not get too much on my plate, and be sure to take time to rest and relax.

Yesterday was a hard day for that, because I had so much to do. And I have a lot of catching up around the house. It will get done. I have to believe that. I just can’t skimp on my sleep. Gotta take care of business — and that includes resting up. A lot. Because this coming week is a short one, but I have even more to do.

So, there’s another opportunity to learn.