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.

Woot.

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.

Woot.

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…

Onward.

Well, this is nice…

laptop-newI’ve now entered the 21st century with my laptop. I’ve been running Windows XP since I left Windows 3.1 – so that should give you an idea how long it’s been. I have probably been using XP since the late 1990s, and it’s  been getting progressively worse, over time.

First, my old laptop was slow. I mean SLOW. And getting slower. It was partly because the hardware was old, partly because all the new patches and updates to my browsers, software, and different running parts of my system were putting a lot of strain on the system resources. It’s like my computer was having short-term working memory issues – just like me.

And it wasn’t fun.

Eventually, it just got prohibitive. There’s only so much blocking I can handle. Browsers throwing errors all the time, having to wait for updates, everything running slower… slower… slower… And I couldn’t even get a lot of the programs I need to run, these days. These are tools I need to keep my skills up, so I can continue to earn a good living. If I don’t keep my skills up, I am at a big disadvantage. Plus, there are some very cool tools out there, and if I don’t keep up, I’m not only hurting my chances to earn a good living, but I’m also missing out on some pretty cool stuff.

And it’s the cool stuff that keeps me going.

So, I broke down and got myself a new computer — for a fraction of what it normally costs. A new one goes for $1600, but I got mine for $250. And it has a hard drive that’s twice the size of a the top of the line new ones. That’s important, because I do a lot of work with big chunks of data and information, so I need to have enough “overhead” without running out of room.

So, I spent last night setting up my new laptop. I got it all set up with the stuff I need, and I’m adding more as I go. I can now install the apps I couldn’t even come close to, before. Plus, I can get new ones that I never knew about. I now have an email program that pulls in messages from a number of different accounts and lets me keep up on my activity. That’s been a problem for years, because I would need to login to different email addresses, and sometimes I wouldn’t do that for weeks. So, I missed out on important family messages, as well as volunteer opportunities. And I would have to scramble to catch up.

That doesn’t need to happen, anymore.

Plus, I now have a spacebar that doesn’t flake out on me. My old computer had a wonky spacebar that I had to keep punching, to get it to work. I had to press it at exactly the right place, for it to work, and that screwed up my hands, because it was an unnatural position for my thumbs to be in.

Old habits die hard. And when they do, they sometimes screw up your hands.

So, now with my enormous hard drive, and a 21st century operating system, it’s like a whole new day. The sun is rising, and it’s looking to be a gorgeous day. I am keeping my old laptop for traveling, for those times when I just need a way to get online. But this new one… well, it’s pretty sweet. And that makes me incredibly happy.

New day. New ways.

Onward.

A tool to help me sleep

CBT-i Coach

I have been poking around on the Apple App Store, and I found a great little app for helping me deal with my sleep issues. It’s called CBT-i Coach, and it’s a mobile phone app for vets, service members, and others who are in Cognitive Behavioral Therapy for Insomnia.

I’m not in CBT, but I think this could really help me.

I’ve been filling in the details for my sleeping habits, and there’s nothing like having all the data right there in front of you, to tell you where you are.

They also have relaxation and mind-body exercises (although the audio doesn’t seem to work on mine unfortunately), and they have information on developing good sleep habits and getting rid of habits that interfere with sleep.

This looks promising to me. It’s another tool I can use – and it already feels like I have another helper in my corner, to assist with my sleep problems.

Just wanted to share that.

Back in the swing of things

So, it’s Monday, and I have to say I’m relieved. This past weekend was kind of sh*tty, and I didn’t get much of anything done that I had planned, which is a bit of a problem, because I have a lot of things I need to get done, and I had two whole days to do them.

Oh, well. Next…

It’s always interesting, seeing how my best-laid plans turn out. I mean, I had the whole weekend choreographed within an inch of its life, and then Friday I flared out and spent the weekend feeling like crap, fighting with my spouse, recovering, and just trying to feel like an normal person again.

Now it’s Monday, I’m back in the swing of things, and I’m actually feeling better — even though I am still foggy and dull and not nearly as sharp as I’d like to be.

The thing is, during the week, there’s all this energy, all this activity. And on the weekends, there’s not. It’s a massive disconnect, and I think that’s what makes me sick — just not being able to keep moving. My spouse has a lot of issues with my “energy levels” — they say I make them anxious, and I’m “too kinetic”. Yah, well, whatever. Kinetic gets the bills paid, you know?

At the same time, they do have a point — I do push myself too hard at times, and I burn out. That is my doing, and it’s the result of me not taking sufficient breaks and not allowing myself sufficient recovery time to come back from my flurries of activity. I need to do a better job of that, and I’m working on it.

One other piece of the puzzle, though, is how much my spouse has slowed down over the past years. They’re a few years older than me, but they act like they are a LOT older than me. We each have very different ideas about lifespans and quality of life — they are convinced that they’re going to live only a few more years — as long as their parents (who both died years sooner than they should have) — and at the same time, they’re terrified of dying. I, on the other hand, believe I’m going to keep going for decades to come, and my main concern is keeping myself mentally sharp and active and able to be involved in my life for the many coming decades. So, I’m ramping up at the same time my spouse is slowing down.

Total disconnect. It’s pretty tough to see someone so close to you, who has been such an integral part of your life for the past 25 years, just giving in to the hype and giving up hope of anything different happening. They say they don’t want to die, and they say they want to live a long time, but they actually don’t act like it. Actions speak louder than words, and their actions say they’re getting ready to pack it in and pass on. The bitch of it is, at the same time they’re doing less for themself, I’m required to do more.

Yet another reason to keep my strength up and keep fit. I can’t imagine the next 10-20 years with them (if we have that long) is going to be a cakewalk.

Well, anyway, what can you do? I’m just glad the weekend is over, and I can get back to my regular routine, taking care of what needs to be taken care of.

I did my warm-up exercises this morning — some weight lifting and some balance work and some coordination footwork. I’m focusing less on building strength and endurance with extended workouts and focusing more on warming up, feeling good, moving, and getting in the swing of things. Waking myself up, and feeling good at it, too. Just moving. Getting the blood pumping and getting a bit out of breath. Pushing myself a little bit, and then giving myself a chance to recover.

I’ve got my list of things I need to do, and I started on one of them this morning. Having my list makes things so much easier — I don’t have to keep things in my head, and I can put everything in perspective by seeing it all on paper in front of me.

That helps. When I try to do it alone without any tools or props… look out.

Speaking of looking out — the day is waiting. Gotta get a move on and see what the day has to offer.

Onward

Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

  • My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.
  • If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.
  • It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.
  • My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB

Confessions of a compulsive list-maker

I admit it – I’ve grown somewhat compulsive about my list-making.

I created a “master list” that I use to track my daily productivity — and to make sure I’m doing all the things I’m supposed to be doing. I also have separate lists for work things and home things.

I have lists that track the longer-term and more complex items that are on my to-do agenda: clean my study, file my taxes, fix the broken faucet in the kitchen, sell extra items I have lying around the house online.

I also have lists that detail “big picture” things I need to do — like clarify my Life’s Work, strengthen skills I need for long-term employment, and distant goals in the future.

Now, it may seem like a lot — and on some days, it is. But frankly, if I didn’t keep these lists, things would fall off my plate and not get done. Things that need to be done — like fixing the faucet in the kitchen and filing my taxes and taking the trash to the dump. These are just things that regular people do, they’re just a part of life — and if I don’t write them down, they won’t get done. I’ll forget all about them, while I’m off doing something else that did get written down on one of my lists. Or something that looked like fun that popped up out of nowhere and pulled me off in a different direction… only to eventually dissipate and disappear into the aethers.

These lists are not only helpful in keeping me on track — they also help me monitor my fatigue level. And my overwhelm. When my lists start getting longer and longer and increasingly involved, I can tell that I’ve got too much on my plate and/or I need to spend some time catching up with myself. Having a lot of things on my list overtaxes my system, yes — but it’s not only a cause of fatigue and overwhelm. It’s also a symptom.

I can tell I’m getting over-tired and not taking quite as good care of myself as I should, if I start listing an increasing number of small steps in between big ones… or I list things that really don’t need to get done. When I start micro-managing myself and adding things to my plate “for the fun of it,” I can tell I’m getting off track, and I need to step back and reassess where I’m at — not just in relation to my tasks, but in relation to my life.

Here’s a healthy list:

  • Clean my study
  • Work on taxes
  • Fix faucet in the kitchen
  • List items for sale online

Here’s an un-healthy list:

  • Clean my study
    • Find bank statement folders for 2005
    • Organize letters from family
    • Collect all journals since 1994 and organize
    • Vacuum and dust
  • Work on taxes
    • Clear workspace on dining room table
    • Gather calculator, scrap paper, pencils with erasers
    • Defrag computer
  • Fix faucet in the kitchen
    • Locate wrenches
    • Buy parts at hardware store
    • Clear out sink to make space
  • List items for sale online
    • Take pictures of items
    • Download to computer
    • Crop and edit photos
    • Write up text for ad
    • Research comparable prices
    • Check email regularly after listing to see if there are any takers

It’s not that these steps aren’t all appropriate. Some of them are, and some of them aren’t. The point is, when I get to the point where I’m writing down every last little thing I need to do (sometimes I go so far as to specify which jeans and boots I’ll be wearing when I mow the lawn), it’s an indicator that my brain is not trusting itself with relatively basic details and it is compensating in advance for problems it’s anticipating. That means it has an inkling that it’s having problems, and I need to listen to that – pay attention to the signals and signs, and adjust accordingly.

The way I adjust is by taking time off. Stepping back and pacing myself. Not getting so wound up and frantic over every little thing that I can’t function unless I’m giving myself explicit instructions down to the most minute detail, but breathing deeply and relaxing and just thinking things through, before I get started with them. When my brain is in decent working order, I don’t need to have every little action item outlined for me. I can identify the big things, the main activities, and then work from there, stopping frequently to check in with myself about how I’m doing… and not being afraid to step away for a break, because I know I’ll come back to finish the job.

I suppose it’s about trusting myself… knowing my limits… and recognizing the signs of overwhelm — while it’s happening, while it’s building, and before it snowballs into a massive Sisyphusean boulder of hurt-in-the-making.

Yes, those lists do come in handy… so long as I don’t  become too dependent on them and let them take over my life.

‘Cause when the lists do take over my life, I end up being so busy keeping them updated, that I actually get less done. And then I’m upset with myself at the end of the day. And that’s not good. The point of the lists is to get things done, not keep more lists. The point is to live life, not just observe it. The point is to establish a real connection with what I do, how I do it, and why I do it, and inject some consciousness, already, into the whole act of living. It’s about turning work into art, life into art, and using extra tools — in this case, lists — to deepen my involvement in my daily life, which can (when I ignore it or gloss over it) can rapidly get away from me.

Anyway, last night — after not getting much of anything done and realizing I’d spent a whole day tracking my progress, instead of making progress — the following occurred to me about my lists. And I quote from my journal:

It’s quite simple, really.

It’s (list-making) not just about keeping lists and checking off items and critiquing myself at every turn.

It’s much more about paying attention to your life. Not taking things for granted. It’s about participating in your own daily activities with full consciousness and mindfulness.

And learning along the way.

It’s about having a fully involved life that you live by choice, not by default. About being open to experience and not falling back on rote repetition of someone else’s ideas about what your life should be like and what should matter to you.

Indeed, tracking what I’m doing, how well I’m doing it, and understanding why I’m doing it in the first place gives me a safe and convenient and tangible connection to my life. It relieves me of the pressure of keeping everything up in my head, and it helps me see — right there in front of me in living color (green for success, orange for still-in-progress, and neon pink for rats-didn’t-work-out-I’ll-try-again-tomorrow) — how my life is shaping up, where I’m doing well, where I’m falling down, and how I can do better next time.

Ultimately, this record-keeping compulsion serves a very useful purpose, in showing me where I’m at… Where I’ve been… How I got here… And where I think I should go next.

Onward…