Homing in on what’s been missing

It’s been a busy day. All of a sudden, it’s like the flood gates have opened on some creative impulses, and I have been in a bit of a writing frenzy, with the words just flowing onto the screen in front of me. I didn’t even realize just how much I’d been carried along, until I looked at the clock this morning around 10:40 and realized I needed to hustle before places closed early for the Memorial Day weekend.

So, off I went. To the stores. To the libraries. I picked up some books I scoped out online — and I decided against some others that seemed like they were good when I was looking at their listings on the library website, but turned out to be duds, when I held the real thing in my hands and paged through them.

Funny, how you really can’t judge a book by its cover. Or its write-up from Publisher’s Weekly.

I got home in the late afternoon, then I went to bed for a while. I napped for a little while, then I read for a little while.

Looking at my list of things to do today, it looks like I’ve been very, very busy. But it doesn’t feel like it. I’ve just been going along, doing my thing, enjoying the space to move in — space I haven’t had for years. I have another couple of days before I start my next job, so I have some time to spend on things I haven’t been able to think long and hard about for some time.

One of the things that really strikes me, right now, is how much freedom I’ve had to give up, for the sake of holding down a job. The position I had before was so demanding of my time and attention — it taxed me on every conceivable level, and I can’t say that the rewards really justified the effort required. On the other hand, I did develop a lot of ninja coping skills — especially for someone dealing with TBI — so I’m stronger now than I’ve been in a long time. Maybe ever. So, it’s not all been a loss.

But still, it’s really nice to not have to hassle with all that, anymore. I have some space and some time to really think things through — ideas I’ve been working on for a long, long time. Years, really. Ideas that came to me five, six, seven years ago, but never got a foothold because I was such a wreck, back in the day, and my last job gave me no time or space to work through them in depth.

It’s pretty tough to not be able to complete a complex thought all day, every day, in the workplace. It’s exhausting. And then I needed to recuperate on the weekends, with no hope of ever catching up. Not for real.

So, I’ve been in a holding pattern with regard to these projects. A serious, big-ass holding pattern. And it has sucked.

But it doesn’t have to suck anymore.

Now I can stretch out my cramped “wiring” and settle down for some serious thought. In ways that I haven’t been able to think in a long, long time.

The nice thing is, my ninja coping skills have toughened me up. It’s seriously like I’ve been pushed to the wall, week after week, month after month, year after year… and now my reward is… NOT being pushed anymore.

At least, not till Tuesday. Who knows what will happen then?

But I do know this — I will not be working 50-60 hours a week. I will not need to wake up at 5 for some damn’ conference call. I will not need to stay up till 10:30 at night troubleshooting stupid-ass technical problems with a rickety old system that was for sh*t. And I won’t have to drive all over creation to get to an office that’s wide open, incredibly loud and active and distracting… and then drive all over creation to drag my ass home again at night.

Now I can think.

Now I can ponder.

Now I can get back to being myself, instead of some corporate drone with no prospects other than what was right in front of me.

Now… what shall I do?

I guess my first undertaking is to figure out what’s really important to me. What needs to be worked on? What needs to be finished? What are the prospects of each of my projects, and how can I complete them and pass them on to other people who may find them interesting?

I actually have an old buddy at a prestigious university who is studying and teaching in an area that interests me — and which I’ve been writing about. I’ve read some of their work, and frankly it seems stunted. Defensive. Small. I’d like to write up some of my ideas and pass them along to them, for a slightly different perspective on things. I think it could enlarge their view.

It’s just my perspective, of course, and they may not think much of it. But we did have some very interesting exchanges when we were kids. We traded ideas like some kids trade baseball cards. And it was good. We both have fond memories of those discussions, and those memories have sustained us both into adulthood.

We got off to a good start.

So, now it may be time to jump-start that connection again. I’ve got lots of notes, many of which have been organized and typed up into coherence. With some rest and some reflection, I believe I can refine them even further, to make more sense to someone outside my head. The best part of this is that the discipline of organizing my notes for another person also helps solidify things in my mind, so I get clearer as well — and I find more practical use for the ideas I organize.

I’m being vague, I know. Sorry about that.

Bottom line is, I’ve now got some bandwidth to go back to thinking at length about things, and it’s good. I also feel much more confident about communicating with other people, so I can do something with the ideas I have… not just keep them locked up inside my head. I have some organizing and experimenting to do.

That’s whats been missing. And getting that part of my life back online is what matters most to me now.

So, onward.

Keeping that warm fire burning

It’s up to me to feed the fire

I’m in kind of a raw place this morning. I’ve got a phone screen interview for a potentially great job, later today, and I’m starting to get nervous. The last phone screen I had went really badly. And the last couple of interviews I had didn’t go that great, either.

So, I’m nervous. I need to change jobs, and this could be a great next step, but I’m pretty raw from my past experiences, and I’m concerned that I’m going to screw it up all over again.

It’s disheartening. I want to do well, and the last few times, I intended to do well, but I just couldn’t manage it, and things just tanked on me from that point. It’s been a while since I had what really felt like a win for me, job-wise.

I’m probably making it worse than it is. I know I am. My perception of myself and my abilities is much inferior to what others think of me, and when someone pays me a compliment, I have a hard time accepting it. I have a hard time accepting anything for myself that isn’t criticism and blame. I want to change this, but it is extremely hard. I feel like I have to be pretty hard on myself, or I won’t perform. I won’t pay attention. I won’t be sharp, if I’m not being stressed and put on the spot.

This is when TBI becomes a real issue for me. Or rather, the real issue is the reactions of people around me to my abilities and behavior after all my TBIs. I’ve been getting injured since I was pretty young, and people have never been particularly generous or forgiving about the problems I had with attention and memory and figuring things out and just knowing where I stood in the world.

It really blows chunks, to get beaten up on all your life, because of other people’s stupidity and failure to realize what the problem really was.

It just sucks.

It’s not my fault I forgot things and didn’t realize it. I wasn’t lying. I just didn’t remember.

It’s not my fault I was easily distracted and I got confused and tired, and I couldn’t finish big jobs I was given. I just got turned around and couldn’t figure out how to keep going, and nobody would bother to help me figure it out.

It’s not my fault that light and sound and touch all hurt me, and I pulled away from people when they tried to make contact with me. It was so painful, and sometimes it felt like they were burning my skin.

None of that was my fault. I got hit in the head a lot. I fell. I had accidents. I got roughed up a bit. But rather than giving me the benefit of the doubt and helping me sort things through, all anybody could manage was criticism and name-calling and taunting.

The weird thing is, a lot of what used to happen to me is a bit blurry. My memory is definitely not what it used to be, and when I think back, I don’t have a lot of really clear memories about what all happened. I have some memories of bad stuff I went through and some memories of good times I had, but it’s all kind of jumbled together.

So, for all I know, a lot of good things could have been happening to me, but I can’t seem to remember them. The bad things are easier to remember.

And that doesn’t help me.

It really hurts me. It keeps me locked in a partial understanding of myself that isn’t at all fair. I have a lot on my plate and a lot of things I want to do with my life, and new people are coming into my life, so I need to not let that hold me down. I need to not let those old “versions” of me define the new life I am building for myself.

Why would I want those old tales that people told about me to limit the new life I’m building?

I don’t. So, I’m taking steps.

The first step is to realize that all the things people have said to/about me, have been more about them, than about me. My parents were young when they had me — in their early 20′s. So, they were living with very limited experience, themselves. Heck, they were just kids, themselves. What did they know? On top of that, they were living very responsible lives with a lot of duties and pressure on them, and the world was not kind. So, they took it out on everyone around them, including me.

They were literally doing the best they could, under the circumstances, and if they realized now what they actually did and said back then, I’m sure they would be distressed. My parents have selective memories about my childhood — it’s like we were living on two different planets. Maybe we were. But to go back and dredge it all up… what point would there be to that? Even if I did confront them about it, would they even remember or understand?

I doubt it.

So I’m letting that sleeping dog lie.

And I’m focusing on the positive — not getting mired in what went on before, but looking to what the future holds. The main thing I need to remember in all this, is that my memories of how things were is very spotty — and it’s biased towards the negative. It could very well be that I actually was the happy, active kid my mother remembers me being, but I just don’t remember much of that. It could be that I’m forgetting a ton of great stuff, for whatever reason.

So, if I just take my mother’s word for it, and I don’t let the old negativity about my father get the better of me, it works in my favor. If I just keep in mind that my memories of things, my recollections — my “cellular memory” if you will — is partial and slanted towards survival instincts and identifying and avoiding danger, that puts things in perspective. And I can not get hung up on all the old crap. Certainly, I need to face the old pain and accept it, but the fact is, there’s more to the story than that, and I should know as well as anyone that I can’t trust my memory when it comes to details about what was really happening and what it all meant.

It’s far more productive for me to focus on the things I can change — my present and my future — and not let those old misperceptions hold me back.

That means, each day I need to find something to be grateful for, something to keep me going. I need to seek out ways to focus on my strengths and keep my energy up. I tend to “run hot” and burn up my energy very quickly, so I need to keep a steady supply of fuel for myself — mentally, emotionally, physically, and spiritually.

A lot of this is really logistics — arranging my schedule each day so that I have enough time to focus on what I need to focus on, but not so much time that I can get distracted and pulled in a million different directions. It’s also about keeping my mind engaged in positive ways — reading things that motivate and encourage me and offer me new ways of looking at my life. I need to get plenty of rest, which I have been doing better at, ever since I got my new bed. And I need to eat properly, which I have been doing — especially since my parents left, and I’m not eating any more sweets that my mother loves to bake.

Most of all, I need to stick with the facts of my life — they speak for themselves. I spend way too much time talking myself down, making light of all the things I’ve accomplished, and brushing off compliments. I need to really “own” what I’ve done in my life, professionally and otherwise, and not let others’ insecurities drag me down. That’s a huge piece of it — because I seem to be surrounded by really insecure people who love to make me feel less-than. What they say and do towards me, is about them, not about me. And I can’t let them trash my life.

They would if they could — just to prove that what I’m capable of doing is not possible, and make themselves feel better. But why should they hold me back?

They shouldn’t. I’ve got to move along, and I need to do what I need to do. I have connected with some pretty cool people, lately, and I’m getting more socially involved in areas where I have a lot of interest and skill. This is outside of my workplace, which is pretty much of a creative desert. And it’s really pushing me to upgrade how I am in the world — with myself and others.

So, that’s good. It’s what I’ve been needing. Isolating all by myself is no good. And that’s what I’ve done for a long, long time. I was just so tired all the time. But now that I have my “rocket fuel” mixture of coffee and butter and oil, I’m actually in a much better place — and I have the energy to keep going, keep moving, and stay involved with the world.

May is almost here. I can feel a big and positive change coming. It’s good. It really is.

 

 

 

Spring is sprung, and it’s time to clean house

I’m not THIS bad off, but I could do better

That pretty much says it all. Spring is up on us, and with it comes a certain urgency with me to clean house — to clear out all the leftovers from the past year that have nothing to do with me, any more, and really put my current interests and affairs in order.

I am making the somewhat radical decision today, to not file additional federal paperwork on a project I started up last year. The paperwork would be all about registering the intellectual property of my project, and it would ensure that I have the right to sue other people for stealing my ideas.

In theory, that sounds like a good plan. It protects my rights and makes it possible for me to profit from my inventiveness and creativity.

However, in practice, it’s not very workable. Say a big company comes along and likes my idea and decides to steal it. I would need to launch a big-ass legal action on them and be willing to go through all the drama around lawyers and court appearances and filings and whatnot. I’ve had enough of courts in my past several years, and the last thing I want — even if it’s to protect my intellectual territory — is to spend any more time in court or around lawyers.

Not only would I need the right legal help, but I’d also need the time and energy to pursue all recourses, and God only knows how long that would take, and how much energy it would demand. I just don’t have that kind of bandwidth available, and the stress of it… well, that’s just not worth it to me.

I’d much rather have a good and settled life that has a good balance between challenging work and having enough time to blog on the side. That’s what I really want — to refocus my energy and attention on TBI recovery solutions, and make a positive difference in people’s lives.

So, that’s what I’m going to do. My study is chock-full of all kinds of materials — some of it junk, some of it gold. I have a ton of old bills lying around in stacks on my two desks, and I have a bunch of unopened junk mail that I thought might be interesting… but hasn’t appealed to me enough to want to open it. I’m feeling a bit blocked in, to tell the truth, and I need to free up some space for the things that matter most to me:

  • Sitting/breathing meditations
  • Stress inoculation / hardiness development (strength and endurance training in all aspects of my life)
  • Learning new things and relearning old things I lost
  • Sharing what I’ve learned so that others can benefit as well

I have been thinking long and hard about what I want to do with myself and my life, lately. I have really thought hard about my Big Project from last year, and whether I need to continue it. As much as I want to follow through as planned, upon closer examination, I now realize how much time and energy it has consumed from me, and what a source of anxiety and worry and stress it has been for me. I really learned a lot from it, but in the end, it’s really not what I want to be doing with my life, so I’m letting it go.

And when I consciously let it go in my mind, I feel this enormous rush of relief that opens up all sorts of other possibilities for me.

Like another more technical project I had started about 5 years ago, which I let go because I was having so much trouble with the work involved in making it happen. It was a good project, and I hated having to let it go, but my brain just wasn’t up to it.

My brain was too scattered, to easily distracted by all sorts of peripheral details that had nothing to do with what was actually going on. I had trouble interacting with other people, because my moods were so crazy, I would get pretty aggressive with folks, and my anxiety was out of control. It’s kind of tough to lead a project and present yourself well, when you’re a heap of frazzled nerves and you’ve got hair-trigger reactiveness. Plus, the technology I needed just wasn’t there, yet, and because of that, there were a ton of legal and federal regulation issues that were insurmountable hurdles for me, at that place and time in my life.

Now, though, the technology has matured, and I want to re-start that project. It was a good one, and the initial version of the program I wrote actually helped me with my recovery a great deal. So, I want to re-start that and take it to the next level. I have had many good ideas for how to simplify it, over the past years, and I’m ready to start again.

Which is good.

And which is why I need to clean my study. All these books and papers and bills and leftovers… There’s just so much … stuff … that I haven’t used in years, and I’m probably not going to use again. At the same time, buried under that stuff is a lot of material that I need to excavate and restart, because that is what matters most to me, and that’s where my passion lies.

Moving forward is really as much about figuring out what you don’t want to do, as it is about figuring out what you do want to do. And making the choices to NOT move forward with certain things, and to clear the decks of all those things, is a major step towards making some real progress.

Spring is in the air. And it’s time to make a new start. The winter has been long and grueling, and I’ve learned a lot of good lessons.

Now it’s time to put those lessons into action… and move forward with the best of what I have.

Onward….

 

Everything in its proper order

Everything has its place. It fits.

I’m taking the opportunity tonight to put my situation in order. I haven’t been feeling well for the past couple of weeks, but people are counting on me… so I am taking some extra time to get my ducks in a row before I travel again next week. I’m doing laundry, sewing a rip along the pocket of my good overcoat, and collecting all my gadgets for the road. I didn’t  take my tablet with me, last time I went, and I regretted it during all flights, both to and from.

I really don’t want to go on this next trip. I want to stay home and rest, not hob-nob and network. I want to go for long walks in the woods and contemplate abstract concepts, not wrangle with taxi drivers who don’t speak any English. I want to lie around the house in my sweats, read books, and cook good food to eat, not live out of a suitcase and have to steam the wrinkles out of my suits by hanging them on the door while I shower.

There are a million different things I would rather be doing, including feeling strong and rested and good about myself, instead of tired and weak and harried and frustrated over the concealed slowness that always threatens to derail my progress and expose me. Expose me.

I’m feeling pretty exposed, these days. My head hurts. A lot. And I haven’t been moving and exercising the way I should. I just don’t feel like it. I don’t want to slow down and mindfully “move into my day”. I just want to get up, eat a little something, and dash off to work. I want to get moving, I want to jump into the flow, not pause and concentrate on my motions, my form. I want to just go. Just do. Just roll on into what comes next.

Which is a positive sign, I suppose. It’s not just me wanting to escape what’s in my mind — although that is part of it. It’s also me realizing that there’s a whole world out there, and I want to be part of it.

If only I weren’t so tired.

But I do tend to be tired, so here’s my conundrum — hold back because I’m beat, and take care of myself so I feel better… or just keep on keepin’ on, and make the best of things as they come.

Better yet, I could decide not to choose. I could do both. I could look for balance.

Yes, balance. I’ve heard of that.

Let’s try balance.

Balance, plus a little bit more. Seeing as I’m back to reading again, I feel this intense need to read about and to study as much of life as I can get my hands on. Books by heretics. Books by brown-nosing sycophants. Books by partially talented (though who am I to categorize anyone?) writers who long to take wing and burst into song, and give it their all in the process. God, but I need to “un-couple” — you know, lift the linchpin out of the coupling that binds me to the train of boxcars that rolls through my ordinary life, and really — by all that’s right and fair and wrong and unfair — let myself slow. Or jump the tracks. Or simply break pace for even just a few seconds from the momentum of the day-to-day.

Drink bitter tea that will kill my cold before it gets hold of me. Eat spoons full of honey that take the bitter edge off my frustrating days. Lie down on the couch and look at the whorls of the ceiling while my spouse talks to their family about the latest kindred drama. Pick up a thick pen and feel the heft of it as I scrawl across a piece of paper.

This, all, is what makes it all worth it for me — so much in the details, so much to be felt, seen, thought, sensed, lived. So much in the cracks and corners of life — the sight of a wide open field under the morning sun, as I roll by on my way to work, the sound of one of my favorite songs that Pandora just happens to play, the creak of that janky strut in the back of my car… All of it adds up to one big — well, life.

And here I am, back to the balance idea.

Because it’s all there, you know. It’s all there for us to see, feel, think, sense, taste, touch, hear. To live. I can let the fatigue knock the stuffin’ out of me, as it almost did on my way home from work tonight. Tired… so very, very tired… and the darkness all around me streaked by the lights of cars and houses passing by…

Into the night… through the night… there is dark and there is light and there is everything in between. It all has its place, and my own place seems to be as much about getting out of my own way, as it is doing anything at all with what I’m given.

I’ve been given a lot. I’ve also lost a ton. I can read again. That is something. It’s really something indeed.

And for that, I am very grateful.

Onward.

Gotta get moving again

Ouch. The past short week with all the long hours — 5 a.m. till 7 p.m., most days — has been kicking the crap out of me, and I woke up this morning feeling like I’ve been beaten with a stick. It’s all those old sports injuries from my past, including a very sedentary lifestyle in my present. I do manage to get up and move, throughout the course of the day, but lately I’ve had to do work that has me sitting for long periods of time, just hunched over the keyboard, and that just plain sucks.

So, I’ve got to do something about it. I have been going to physical therapy to help with my neck and shoulder, which I injured a few months back and has not quite healed yet. I’ve learning some exercises to do, and I have a printout to follow. Now, I just need to put it where I can find it and remember it. I got it a couple of weeks ago, but it ended up on a pile underneath some other papers — out of sight, out of mind. No matter now often I tried to remember to dig it out and consult it, I kept forgetting.

That being said, I just retrieved it from my pile and it’s sitting here on the desk next to me. That’s an improvement already.

I also did some exercises this morning while I was making my breakfast — not the usual exercises 1-2-3-4-5-6-7-8-9-10 and repeat… that gets boring — but just moving around, loosening up, getting my bones cracking and my blood pumping. I get a little too staid with my exercises, first thing in the morning, and they don’t feel that great, so I back off. And then I end up doing nothing… Unless I’m doing chores around the house and yard, in which case I’m moving a lot, lifting and pushing and pulling and really testing myself.

Feast or famine. And then I end up with a lot of pain and stiffness and I get sedentary… and I end up like I am now — stiff and sore and one bit instance of ouch.

Ah, well. So it goes. At least I know I’m alive, right?

I’ve heard a lot of friends say that this is the year they get their act together, health-wise, and I’m in the same boat. I feel like the last few years were just all about survival — hunkering down and keeping a low profile and just soldiering through. Just staving off disaster, nothing more, nothing less.

This year, it feels like things are loosening up, all the upheaval in Ukraine and Venezuela notwithstanding. All kinds of crap is breaking loose all over the place, but in my little corner of the world, things are actually normalizing. Granted, I have come to detest my job all over again, and I can’t even begin to say how crazy it makes me to work with people who are arrogant, entitled, and utterly incompetent because their bosses have been letting them slide, lo these many years. It’s truly pathetic. There is a cost for coddling slackers. And I’m sick of paying someone else’s bills.

On the bright side, this motivates me all the more to step up and actively manage my own career and make some inroads where I can. I’m just going to keep steady with my own work and my own path, and let everyone else figure it out. Seriously, it’s not my job to win the hearts and minds of everyone around me. They can manage their own damn’ selves. I’ve got work to do, and I’m going to do it.

Now that I’m looking at my printout of exercises, it’s coming back to me… my physical therapist showed me some good stretches to do, and some of these I can do at my desk, as well as in the car while I’m driving. Or I can just step away from my desk for 10 minutes, every couple of hours, and do them. It actually wakes me up a bit, to stretch, and it frees up the blood flow and energy — gets everything “talking to each other” much better. So, it should help me in the course of my daily work.

Despite my bitching, the simple fact remains that people who can do difficult work get paid the big bucks. Those who can take on impossible challenges and deliver, are the ones who are most valued in a large company, and rather than dreading and avoiding challenges like the ones I face each day, I should be welcoming them as a chance to grow and improve. There are a number of things I really dislike about this job — the workforce, the arrogance of management, the overwork and underpay, as well as the travel which destroys my quality of life. But if I can work around those things and focus on the parts of it that I want to really emphasize, then I can make this work for myself.

Having to soldier through all the muck and weeds is incredibly taxing, but that’s just part of living and working. I need to just suck it up and get moving, make the most of the situation where I find myself, and really focus on the gratitude for what I do have.

And take care of my health. I’m going to see my doctor today about my headaches. I suspect they’re just tension headaches, but it could be something else. And they come on when I exercise — I can start out feeling pretty decent (headache at a 2/10). Then I’ll start to exercise, and when my heart rate goes up, my headache kicks in harder — going up to a 6 or a 7 out of 10. It makes it a little difficult to get excited about exercising. I thought it would just go away over time, but it hasn’t. And so I need to check with my doctor.

This coming June, it will be four years since I started at this company. It has been a wild ride. I’m not sure how much longer I should stay, actually. And later this year, when I have revised my resume and goals and objectives, and I am more clear about the new direction I want to go in, I can start looking. Right now, it makes no sense for me to move. I just need to stay focused on what I am doing and stay true to myself.

And not let others hold me down or cloud my judgment. I’m surrounded by people whose judgment doesn’t seem to be that sound. I can’t let that affect me and blur my own vision.

So, yeah. Onward.

 

 

Finding progress after TBI

It’s there if I look for it

It’s been a real roller-coaster of a year, thus far. Work changes, home life changes, and trying to “reboot” my life for the better.

I’ve been noticing that I get pretty FIXated on what needs to be “fixed” in my life — what’s wrong, what’s going worse than I want it to, what needs to be addressed so that I can relax.

Relax… hm. There’s an idea.

But here’s the thing — a lot of what I think is “wrong” is going to change on its own, so I don’t actually need to do anything about it. A lot of what I really struggle with isn’t going to last. The job situation changes, as people come and go and the company decides to do something completely different. Family situations change, as people get sick and get better and learn their lessons and talk things through. Everyday life situations change, too. It’s just the nature of things.

So, getting too caught up in fixing something in my life that’s going to change, eventually, anyway, doesn’t actually make a lot of sense.

What makes more sense, is to settle into my own life, my own pace, my own way of thinking and doing things… figure out what I want to do with myself in my life… and stay the course as I get there.

All around me, things are crazy. People are genuinely insane, and they’re not making much attempt to hide it, these days. I can’t even look at the news these days, because all that’s there is drama and pain and blood and explosions. There’s no news of anything really good going on on mainstream media. Seriously, there’s not.

So, I have to find a different way — in the outside world and internally as well.

There’s Good News Network, for example, which shows all the good things that are happening in the world that don’t get major media coverage. There’s Good News on the Huffington Post, and then there’s Happy News, which is real news of happy things.

Internally, I need to keep my spirits up, as well, and really concentrate on the good that’s happening in my life. I tend to be so oriented towards addressing issues, finding what’s wrong and fixing it, that I neglect the good when it’s there. And I end up feeling artificially bad about so much, when I could feel genuinely good about so much more.

The fact of the matter is, I can now live my life with 1000% more sense of capability, than I could, just a few years ago. The fact of the matter is, even in the face of really difficult conditions, I can function — and function very well. The fact of the matter is, I have learned how to manage my temper and control my anger outbursts. The fact of the matter is, people who used to be afraid of me, no longer are. I have a better relationship with my family than I ever have — I even spent an hour on the phone with one of my siblings on Sunday night, talking in ways we have rarely talked — nothing that heavy, just talking for real about our lives and how we feel about them.

So much in my life has improved over the past years of dealing with my TBI issues. So much has settled itself, or I’ve found ways of handling it all with more capability than I thought I could. I have done some pretty amazing work, and I need to remember that — maybe make up a record book of some kind to remind myself of how far I’ve come, and what I’ve accomplished.

Because I forget. I forget and I lose sight of those things. My memory is not my best friend, when it comes to tracking where I’m at and how far I’ve come. I’m pretty caught up in the everyday, so I tend to focus on that.

But there’s more to life than the present instant that needs to be “dealt with”. There’s a whole world of past and future that’s looking for my recollection and discovery. And the bottom line is, no matter how much I may doubt myself from day to day, I have a whole lot of experience overcoming substantial roadblocks, and I can be pretty proud of that. I need to pace myself… and remember that even overcoming roadblocks, as necessary and encouraging as that can be, does take a lot of energy. And when I get depleted, I get depressed — for no other reason than that I’m depleted and I need to recharge my batteries. I get so tired, I forget that the very reason I’m tired, is because I’ve been doing really good work — and a lot of it — all day.

So, as much as I think about “making” progress in the course of my daily life, I also need to remember to find progress — steps I’ve already completed (and successfully at that), which show me I’m far more capable and resourceful than I give myself credit for.

I can do better about giving myself a rest and letting myself take a break, so I can come back stronger than ever. And I can remember — whether through a note to myself or a sign on the refrigerator — that I actually am making progress, it just seems like I’m not, because it’s lost in the haze of my fatigue and all my future plans.

Progress — it’s right in front of me, if I but look for it.

Finding hope and making meaning after brain injury

Spring… time for new beginnings…

My day is off to a pretty good start. Last night I got in bed early and probably got between 7-8 hours of sleep, which is a record for the past week or so. Long-distance travel really does a job on me, especially when it’s for work and I have to be “on” the whole time. Getting back to some semblance of normalcy has been a big struggle for me, which I really don’t care for. I like my routine. I like my cadence. I like knowing where I’m going to be, and when.

I hate to wing it. I hate to “fudge” times and dates and whatnot. It’s just more details I have to keep track of, which is a terrible waste of time, especially since I tend to forget those details and then I end up looking either like an idiot or a poseur, or both — none of it is good.

Anyway, in search of something better and more hopeful, and in honor of being back on my home turf and back in my own daily routine, I spent my time this morning exercising (first thing when I got up), and then having a good breakfast, and then sitting down to read and study a bit. I’m reading some interesting work by Howard Gardner, who came up with the “multiple intelligences” theory that saved my ass back in the 80′s. All of a sudden, my own version of intelligence, which didn’t match what everyone else expected, wasn’t so bad after all. So, thank you Dr. Gardner, for that.

I also did some reading in the sizeable collection of PDFs about neuroscience and TBI that I’ve collected over the years. I unearthed this little gem: The Importance of the Patient’s Subjective Experience in Stroke Rehabilitation (you can download it by clicking this link), and taking a closer look. I think I read this, back when I downloaded it a year or two ago, but I honestly don’t remember. Heck, I might have blogged about it… but again, I don’t recall. (I searched my blog for the title, but I didn’t find anything, so it could be this is my first mention of it.)

In any case, my memory notwithstanding, it was a good read. The things that are discussed are just as appropriate to traumatic brain injury as they are to stroke/acquired brain injury. I highly recommend it to anyone who has experienced either,  as well as those who live/work with them.

The basic gist of the article is that in brain injury rehab, survivors can be severely impacted by their own subjective experience of their injury — they can take it hard and it can really knock their feet out from under them, because (among other things) their sense of self and sense of who they are/should be is so disrupted — sometimes beyond their own comprehension. One of the hallmarks of brain injury, be it TBI or stroke, is a tendency to not have a clear view of where you stand on things, what your abilities and limitations are, and to not be able to express your feelings very clearly about what seems to be going on with you.

As Prigatano says:

Many patients with brain dysfunction are more confused than meets the eye. They simply do not know how to approach the problems they have experienced nor how to discuss the feelings they have that are associated with their restricted functional capacities. They do not know how to deal with interpersonal relationships in light of their … condition.

Been there. Frequently. It’s not fun. And it’s exhausting to have to cover it up and compensate for it all the time.

The thing is, this can lead to a real slowdown in one’s willingness to engage with the rehab process, and it can undercut your recovery. When you’re uncertain and stressed and you can’t see your way through something, it can lead to a “catastrophic response”, which is where everything feels like it’s collapsing in on you, and you’re totally screwed, and there is no way in hell you’re ever going to find your way out of this mess. So, you just quit. You give up. You can’t move forward, back, or anywhere. You’re just stuck. Catastrophe. What seems like the end of the world, can come to be like it, because we just quit.

And the bigger problem that actually contributes to this phenomenon, is that brain injury rehab people (or others who are helping with our recovery, including friends and loved-ones) don’t always take the personal experience into account. They focus on the acute issues, they focus on functionality, or they get into the exercises, drills, whatever, to help restore functionality to the person… without actually addressing the impact this has had on the individual themself.

So, overlooking that aspect of the experience can contribute to a slowdown in progress. And not only does the survivor see less advancement in their abilities, but their self-image and ability to participate in life is even further impacted. It’s a vicious cycle, which has its roots in overlooking the personal impact that a loss of functionality and change in personality has on the survivor.

I’ve seen that myself with my own neuropsych. They tend to try to steer me away from dwelling too much on the difficulties I’m having, and get me to focus on the positives. Rightly so. I can quickly become mired in my own despair, because I can’t see my way out of things and I have a catastrophic response where I just quit talking, quit responding, quit everything. It’s too much. How many minutes (maybe hours) I’ve spent with my neuropsych, just sitting there shut down, not wanting to move or talk or respond or communicate because I didn’t know where to start… I can’t even count them. At the same time, though, not having someone who “is supposed to understand” acknowledge the difficulties you’re having, can really put a damper on your enthusiasm. It’s only in the past couple of months that they’ve even mentioned some sort of empathy for my situation. I get the “tough love” thing — yeah, I should keep my spirits up and look on the bright side instead of indulging my morbidity and paranoia… at the same time, though, it would be nice if I could at least get some acknowledgement from them that I’m not crazy, being concerned about some of this stuff I experience. And their reluctance to “indulge” me by acknowledging the down-sides of my situation, has really stymied my work with them at times.

Now, on the other hand, when the subjective personal experience of the survivor is addressed, it can open doors to further improvements and developments. Frankly, it’s a relief, to hear someone say you’re not crazy for feeling antsy and nuts and jumpy on a sunny day after a long night without much sleep. It’s a relief to (for once) hear someone talk frankly about your temper flare-ups and not make them into a federal case, like everyone else does. And it really takes the pressure off, when someone acknowledges that you feel how you feel, even if there’s not a lot of “reason” behind those feelings.

Here’s a great case study / example story excerpted from Prigatano paper, as recounted by the author:

… Years ago, a middle-aged accountant suffered a right hemisphere stroke with the consequential effects of a left hemiparesis with mild neglect. He experienced pathological crying where he suddenly would burst into tears, even though he was not sad or unhappy.

He was referred to me for neuropsychological rehabilitation to help him with his pathological crying. In helping him do so, I asked him to focus on his shoe, a neutral object, any time he had the urge to cry. When he did this, it undercut his pathological crying response. He was so appreciative that he began to talk to me in more detail about other concerns in his life. He emphasized that throughout his life he had been a good provider and that he and his wife had enjoyed a healthy sexual relationship. He noted that after his stroke, it was hard for him to get an erection; he was embarrassed over this issue and did not know how to approach his wife. He often would avoid having contact with her for fear that he would not be able to perform sexually. His wife expressed that this was not a major concern or issue for her, but he felt differently. The question was how to help him.

We talked about what he had done in the past to please his wife. He indicated that he always had a good sense of humor and that he always was romantic in his manner of interacting with her. We then talked about what he might do symbolically that would reflect his commitment to her and his desire to continue to make her laugh and to be sensitive to her from a romantic point of view. We struck upon the idea that he could purchase or write 365 love notes that he could give to her throughout the course of a year. He was ecstatic with this idea and immediately went about accomplishing this task. Each morning when his wife took a shower, he placed one love note underneath her pillow. When she found it, she often smiled, and there was a sense of comfort between the 2 of them. One might expect that over several weeks and months this would become fairly routine and boring, but his wife stated that she always appreciated the fact that he took the time and the energy to prepare these notes. It was the sense that he was giving back to the relationship within the context of what he could give that was crucial to maintaining their love relationship. He did this willingly as a reflection of his own individuality. It was something productive, something he produced that was useful to him and to another (his wife). These 3 experiences – preparing notes for his wife (a work activity), giving them to her on a daily basis as a sign of his intense affection (love), and finding the activity fun or enjoyable (play) – had a profound effect in reducing his sense of despair and in maintaining meaning in his life in the face of a rather devastating stroke.

I think that’s pretty cool. Even though the man’s wife wasn’t bothered by how he had been impacted by the stroke, it mattered to him. And they found a way to work around it. Dr. Prigatano didn’t just dismiss the man’s concerns, he worked with him to find a way to “make up” for what he felt he’d lost. And that counted for something with both the man and his wife.

It counted, because it added meaning and purpose to the man’s life. And that’s where TBI can really hit you hard — in the face of unexpected and inexplicable (and sometimes unrecognizable — until too late) difficulties, you can rapidly learn to feel helpless and victimized by your circumstances. And when everyone around you is telling you, “You look fine!” and wondering (sometimes out loud and sometimes not very sympathetically) why you continue to struggle with such simple things, it does absolutely nothing to help you lift yourself out of a sense of helplessness and futility.

Then life can become meaningless. It can become a chore. It can get depressing. And it can just suck to be alive.

It’s bad enough that all of a sudden you have all this sh*t you have to contend with, but then you’re alone with your experiences. No one is validating that what you’ve got going on is actually pretty tough to handle, no one even acknowledges that what you’re up against is pretty hard to take, each and every day… and absolutely no one is recognizing that the things you get right are massive victories, in the face of your perplexing situation.

In the face of this all, what to do? I can’t speak for anyone else, but for myself, I need to seek out meaning and purpose in my life. I need to identify the things that matter most to me, and build my life around those things, those ideals, those concepts, so that I feel that I’m working towards something important that contributes to society as a whole.

This blog is part of that work, just sharing the stories from my life and information I receive, so that others might benefit from it.

My relationships with my spouse and my co-workers are also a big part of it. And my career. And my home. And the things I read and study and digest and put into action in the course of my everyday. I need to stay interested. I need to stay engaged. Even if it’s just in my mind, I need to at least have some sense that I’m connected with a Higher Purpose.

All those things matter to me. They add meaning to my life. And they satisfy my need for work, love, and play. I quote again from Prigatano:

… in our Western culture, there are 3 symbols that help individuals establish meaning in life. Those symbols are work, love, and play.

The symbol of work is especially important in American culture. We often identify ourselves by our occupation, the type of work we do, and our pride in what we have accomplished in our work. Work by its nature puts us in contact with others, which allows human relationships to form and develop. Broadly speaking, work is the symbol of being productive, that is, producing a product or service that is meaningful to one’s self and to others. No matter what the person’s level of disability or impairment, it is important to help each individual to be productive in some capacity. When we do this, we reinstitute a partial sense of normality in their lives.

The second symbol, which is perhaps universally important, is the need to establish a bond with another. Love relationships are complicated because they involve the psychological make-up of 2 individuals who experience a level of intimacy with one another that they do not experience with anyone else. No one has come up with a totally satisfactory definition of love, but from my perspective it can be defined as a relationship in which the other person’s sense of well-being is as important as one’s own sense of well-being. When this is the case, a variety of sacrifices are made to ensure the other is doing well in life. After brain injury, individuals often do not have the desire to attend to the needs, especially the emotional needs, of others. This is a mistake. It is crucial for individuals to emotionally give back to others in their lives to reestablish a sense of bonding and connectedness, which is very important to their sense of well-being.

The third symbol, which is perhaps not as universally agreed upon, is the symbol of play. Here play does not mean recreation. It means the capacity to enter fantasy and to think and feel and do whatever one wishes to do. At first glance, this may be viewed as a purely narcissistic venture. It is not. When individuals are true to themselves and live their lives according to what they believe is in their best interest and follows their natural interest plans, they ultimately do better. Many individuals who have not followed this course find themselves depressed or leaving their work lives early because their work no longer provides a sense of satisfaction, despite whatever economic rewards it may produce.

Again, helping individuals identify with symbols that reflect their unique phenomenological state and what they wish to do in life becomes crucial in stroke rehabilitation and the broader field of brain injury rehabilitation.

I think this is all very true. When you don’t have a connection with anything that adds meaning to your life, and you feel like just a lump of flesh-covered bones sitting around with no redeeming qualities or abilities, there’s not much incentive to do the kind of hard, hard, arduous work that brain injury requires of us.

I have said it before, and I’ll say it again — recovering from TBI is hard work, and if you can’t find it in yourself to really apply yourself and work at it, you may find yourself in increasingly difficult circumstances as the years pass. TBI doesn’t always go away. Sometimes it seems to, but sometimes it stays with us quite noticeably for the rest of our born days… even getting worse, if we don’t make a concerted effort to make it better… to make ourselves better.

So, we have to have some meaning, some hope, some sense of optimism in our lives, to make it through. I know folks who have sustained brain injuries whose outlook on life has gotten worse over time, and their outcomes are not that peachy. In one case, the one thing that saved them is that they have a spouse who has a good job and is the kind of person who will go out of their way for them — for anyone really — to help, for the sake of helping. If they were on their own, they’d be in pretty dire straits, I believe.

Yes, keeping your spirits up and staying motivated are critical for a quality TBI recovery. I DO say “recovery” because despite the loss of some capacities, we can still recover our dignity, our sense of purpose, our functionality, our lives. We don’t have to just give in to the inevitable loss of everything that once mattered to us, thanks to TBI. No way, no how. There is far more to us than any of us can guess, and the main reason many of us founder and flail, is because we just can’t imagine that we might be bigger and better than anything we can conceive.

It’s one thing when your brain is injured, but the injury to the human spirit is even more devastating.

Well, speaking of being bigger and better than anything we can conceive, I’m going to sign off now and get on with my day. I have a lot of little chores to do, before the weekend is up, and I have a lot of thinking to do. I recently discovered (in my treasure trove of TBI research PDFs) a paper describing what kind of rehab activities my neuropsych has apparently been conducting with me. On the surface, it has seemed like I was just showing up, chatting about this-n-that, and then going home to have supper and go to sleep. But apparently, there’s a lot more going on in those sessions than I had guessed. It’s pretty exciting, because now a lot of stuff that I’d just been going with on faith is actually making a lot of great sense. Especially in light of my long history of TBIs.

I’ll share more later, when I manage to work my way through the paper. I started on it yesterday, but I was still so baked from my trip, that I had a hard time reading more than three sentences, before I had to go back and re-read what I’d just reviewed. I gave that up after stumbling and struggling through a few pages. I decided to wait till I was fresh and halfway cognizant, before I dug in again.

Damn - the troubles with reading are troublesome! It’s one of the hardest things for me to take about my situation.  Self-image and all that…

But enough self-pity. It’s time to get crackin’ — go about my business as an apparently normal person… which compared to how I was six years ago, is nothing short of a miracle. Off I go, to revel in my normalcy…

Onward.

What else…?

A new day is dawning – what else is possible?

Time has really gotten away from me, this morning. I was up early with my spouse – who was up late (really late) – and we got to talking, which is good. I have a doctor’s appointment in another hour and a half, and I need to get ready to go. And here I thought I had at least another hour. Funny, how the time flies when I go online.

Anyway, it’s 12/21/12 – the big day, according to a lot of folks. Some go on and on about the end of the world, but what I’ve heard from more folks is that it’s actually the beginning of the next one. A new world. A new start. Not right away – for what really changes in an instant, if it’s truly going to last? But starting now, moving gradually towards What’s Next.

Now, I am pretty much of an agnostic, when it comes to this sort of stuff. Maybe it’s true, maybe it’s not. Who the heck knows? But it is a way I like to think about things. And even if there’s nothing special about this day, other than it’s the marker of when the days start to get longer (and people Up North get closer to seeing some sunlight again), and that we have attached certain numbers to it, I can certainly choose to do with it what I like.

Just like I can every single day.

If I want numbers to inspire me, I can look at the clock — I can decide at 12:12 or 12:21, each and every day, to start fresh – hit the proverbial reset button. Or I can set my alarm for 3:33 each afternoon and treat that as a “reset”. Probably not a bad idea, since my daily clock seems to wind down around 12 noon each day, and then pick up each afternoon around 3:30 or so.

Numbers… Yeah, numbers. I have always played games with them, and I find them fascinating. When I’m driving long distances and I get tired, I play games with the numbered mile markers beside the highway, and that perks me up right away. Whatever does it for you to make your day a little more interesting, a little less stressed, a little more enjoyable… well, that’s alright by me.

And whatever it takes to get our heads out of a terrible space, is fine with me — provided it’s not killing brain cells or doing harm to others (which a lot of people find enjoyable, sadly). My argument about all the Doomsday stuff is that We Just Don’t Know. We can think we know, we can suppose to know, but doomsday-sayers have been in that business for as long as humans have walked the earth. And magically, we’re still here.

The only impact they seem to have is making us feel like crap, while we’re waiting for something that isn’t going to happen.

Now, I’m not going to get into a theological debate over this — I’m just saying that for all the people who have staked their reputations on THE END being just around the corner, how many of them do you remember? Few, if any. Because when they’re proven wrong, as they so often are, they just fade from view — and go back to their work doing whatever they were doing before. And all we’re left with is a bad taste in our mouths and a little more stress to drag us down.

So, on this momentous day, when certain people are celebrating the end of the old and the beginning of the new, I look to the day myself, and I wonder what else I can do that will improve my life and the lives of those around me. Whatever the date, whatever the occasion, it’s a good thing to do in any case. I think about the ways I can turn things around that I’m not happy about… including my doctor’s impression of me as a “risk taker” that I am very uncomfortable with. I shall be having a conversation with them in another couple of hours, and I’m writing it all down ahead of time, so I don’t lose my train of thought. I can turn things around at work by really focusing on what’s in front of me, not getting distracted, and doing a better job of following up. I can improve my experience overall, by improving the skills that make me feel like the person I really am with the capabilities I really have. And I can find other like-minded individuals who are seeking to make the same kinds of positive changes — both personally and on the larger social and cultural stage.

For some reason, this time really feels like a turning point for me. I feel pretty energized by the possibilities… and the thing that makes me feel even more energized, is hearing so many people talk about new beginnings, where a week or so ago, they were talking about drudgery and sadness and misfortune and all that. People are stepping up to take more responsibility for their lives and their situations, and that’s really exciting for me. Because I’ve always known it was possible — and now with this “new era” dawning, more people are starting to agree with me.

I guess that’s the thing that excites me the most about this Winter Solstice — that other people are realizing the same thing I’ve know for many, many years: that anything is possible, if we put our minds and hearts to it, and we don’t accept the same-old-same-old as a given.

Truly, it is a new day. And I’m so happy others are seeing it, too. :)

Seeing the light ahead

I just talked to a friend of mine who is totally stoked about some self-improvement work they’re going to be doing in about a month or so. They are so excited, it’s wild to see — this is someone who has seemed to me to be almost clinically depressed. They just can’t seem to get their act together, and they always have an excuse for why things didn’t work out for them. Their energy tends to be low, unless there are lots of people around to lift their spirits.

Then, they come across this intensive workshop that’s being held for several days in a row, a couple of states away… it’s expensive, and the don’t really have the money… but they’ve heard incredible things about it from friends who once did it, and they’re doing what they can to get the money together and go.

They’re going. They’re just going. They’re not sure how — they need to get plane tickets and find transportation to the venue from the airport… they have mobility issues, so it’s not easy for them to hoof it around… and they’re starting to have second thoughts and pretty intense dreams… but they’re going.

They’ve committed. They’re going to make it happen. No matter what.

And the change in them is pretty amazing. Because this person who tends to be a bit like Eyore in Winnie the Pooh, is all of a sudden full of life and hope. They can see the light ahead, and for the first time in a long time, they can imagine a future where they don’t have to be held back by their demons, their ghosts, and the fears that constantly dog them.

And it’s a great way to close out the week. Because just hearing how happy and how determined — and how realistic — they are, really lifts my own spirits.

Good stuff.

Hard stuff, too. I’m sure they’re going to go through some stuff between now and then… but they’re committed. They’re locked on. And they’re going to fulfill a dream – to take this workshop and see it through.

It really is exciting when I come across people who are totally about making themselves and their lives and the lives of others better.

Again, good stuff.

Like The Better Man Project I just discovered.

Gotta run – supper’s on.

Be well, y’all.