If I could get some, that would be great. I’ve had to work late, the last two nights, and despite my best-laid plans, I have not been able to sleep till 7 in the morning, as planned. If I’d been able to sleep till 7, it would be a whole different story. But I’m stressed out over work, and that’s waking me up. It’s also keeping me up. So, I’ve got to get a grip on this and not let myself get too stressed over things.
Easy to say. Hard to do. It feels strange, going through the motions every day, keeping up appearances of planning to stay on, while doing everything in my power to get the hell out of that situation as soon as humanly possible… but not jump too soon, or go from the frying pan into the fire. It’s not easy for me to operate in this conflicted state of mind. I really care about the people I work with and I want to be able to commit to it 100%, but I don’t see that happening. The company is just wretched, it doesn’t show any sign that it cares about any of us, they have us working in a building which is structurally unsafe (portions of it collapsed last month), the open-plan workspace is a great way to get absolutely nothing done each day, and they just shuffle us around like cards in a deck. It seems to be the same, just about anywhere you go in the corporate world, so I’m definitely not alone. It’s par for the multi-national corporation course.
Still, it’s not easy. And it’s not what I want for my life.
I really just need to keep my eyes on the prize – keep working on my skills, keep sharpening my abilities, and not get too side-tracked by all the static that’s happening around us.
Because that’s really all it is — static.
Which is unfortunate. Because what a waste of time… And churning over it all is costing me sleep. Rest. Recovery. I’m still not completely over that damn’ flu, and my job situation is not helping.
Well, if nothing else, at least I still have my sense of humor… I think… And it’s a new day, so I’m going to get ready for work and just get on with it. And finish up the day at the office early, so I can come home. And rest.
Things at work continue to be interesting. Yesterday we had a visit from one of the top executives in the company who did a presentation and took questions and addressed the issues that we brought up – kind of.
I get the feeling that the main point of the meeting was not necessarily to address our issues, but to remind us that now that we’ve been acquired and are being assimilated, it’s time to get on board the bus with everyone else and start playing by different rules. And the success or failure of our own personal experiences is entirely up to us.
That’s fine. I’ve done this sort of transition before. But any way you slice it, it just sucks and it’s tiring and it’s confusing and even though you adjust after a while (or maybe you don’t), it’s still a difficult transition to make.
Hmmmm… Yes, I’ve done this kind of transition before, and in the past, it was terribly difficult. The one thing I did not do in the past, was reach out for help. In the new organization, it’s difficult to know who to reach out to, and who you can trust. So, I’m going to call the employee assistance hotline and see if I can get a counselor on the line. In the past, when there were major changes going on at work, I just “sat on it” and didn’t discuss it with anyone, and it just festered.
I also didn’t have a clear path for where I wanted to go, in the past. Now I have a clearer path. And I also have an employee assistance hotline I can call with free counseling. So why not use it?
The thing I do NOT want to have happen, is that I spend so much time dealing with things at work and getting sucked into that stress and that mess, that I don’t have time or energy to take care of myself and my own vision for the future. I really just need to keep clearly in mind what I’m doing, what I want to do, where I’m headed… and move in that future direction, while also tending to my present and making the most of that.
It’s kind of a two-fold path, but it speaks to the full range of who I am and what I am up to, and rather than being something that distracts and dilutes my purpose, it actually adds some life to it.
I need to have something that’s mine, as well as something that belongs to others… I need to feed my mind and my spirit, as well as take care of others’ business.
Some time ago, I decided to quit spending so much time on Facebook. I uninstalled the FB app from my smartphone and I took a break from the daily checking of statuses, which was eating up anywhere from 30 minutes to several hours of my waking time each day. It was costing me sleep, which I could not afford to lose, and it was getting me riled, which I can also not afford.
Seriously, it was getting me riled.
And I wasn’t getting much else out of it. I felt “connected” in a certain way – but connected to what? All the resentments and frustrations and biases and prejudices and outrage… it’s like everyone I knew with an ax to grind invited me to their personal bitch-fest, apparently assuming that I shared their outrage and disbelief, and I’d happily chime in to add my two cents (which is about as much as those kinds of opinions are worth).
Truly, it seems to me that Facebook is a haven for people with a chip on their shoulder, who would rather complain about things than actually get up and do something about it all. Now, there are those who use it to connect in order to organize activities, and in the case where people need to coordinate their efforts with one another, it is proving helpful. I’m thinking about the Arab Spring and other popular movements where people are standing up for their rights.
But how many of the people I was interacting with on Facebook actually wanted to do something about the state of things? Not many. I mean, there were those who were doing interesting things with their lives and sharing pictures. But not much of it had anything to do with me, and in the end, it just left me feeling cold. Because it wasn’t actually real. I wasn’t actually there. And whatever I imagined about how it was and what it was like, that was still all inside my head… not real at all.
And you know what? When I wasn’t on Facebook, I didn’t actually feel less connected than I was, when I was on it, each and every day. If anything, I felt more calm, more relaxed, more focused on what was going on in my life, that I could actually do something about, versus sitting on the sidelines of life, commenting as a spectator.
I wasn’t in that brawl anymore — at least, I wasn’t an active spectator in all the brawls.
And it occurs to me, after last weekend’s NFL playoff game, when Stevan Ridley got hammered by Bernard Pollard and ended up not only knocked out, but demonstrating the classic “fencing response” (which is a clear indicator of a traumatic brain injury – follow this link to learn more about it) … and everyone has been putting in their two cents about how “that’s football at its finest” …. “Ridley brought it on himself by A) playing football, and B) lowering his head as he ran” …. “Harbaugh is a jerk for celebrating that injury” … “Pollard is a jerk for carrying on like that after the hit” … and so on… that so many of these folks are sitting on the sidelines, commenting away, without having any sort of skin in the game, without having any sort of knowledge of what’s really going on out there… all safe and sound and protected on their side of the television or computer screen. Precious few of the people talking are actually football players — pro or otherwise — they just watch and cheer and boo and comment. They’re onlookers who feel emboldened by the exploits of “their” teams and somehow feel that entitles them to make comments on the health and well-being and cognitive destiny of the ones who are actually on the field.
It’s all a bunch of posturing, brawling, sniping, snarking… people getting riled for the sake of getting riled, getting all worked up, perhaps because that makes them feel more alive and it gives them something to focus their energy on.
But it’s not real. It’s not really part of their lives. It has nothing to do with their day-to-day, the quality of which very possibly pales in comparison to the feelings they get when they watch football or get on Facebook. It’s not real life for them in any way — it’s a feeling. It’s not genuine. It’s something that’s invented to entertain and distract people from what’s really happening in life. And the net result, unfortunately, is not something constructive, like added rest and relaxation. If anything, it is the exact opposite — more pain and suffering, masquerading as entertainment and distraction. And then the feeling fades… till everyone gets their next fix.
And that’s exactly the kind of stuff I want to get away from in my life — everyone else can have it. I’m more interested in doing something real with my time and energy. I’d rather be working on my skills and planning my life and be taking constructive steps to making things better for myself and my family and the people I care about, than sitting around sniping at others online, feeling gratified that all my “friends” agree with me.
Anybody can post a comment in a forum. Anybody can share something on Facebook. And it might be entertaining for people. It might be distracting from the pains and confusions of the day-to-day. But it’s not real. And in my experience, it does more to upset and disrupt and annoy and add to the overall discomfort of life, than to relieve any of that. Heck, even the “good” stuff is fluff that flies away on the next strong breeze.
Do I remember the details of any of the stuff I’ve read on Facebook over the past years? Not a heck of a lot. Very, very little, in fact.
But do I remember the feeling I usually get when I go on FB and find people just running their mouths about the crap of the day? Oh, yeah – you betcha. And it’s usually not good.
Life is about choices. And I choose not to bother with Facebook anymore. I also choose to not watch a lot of football, because when TBI actually happens to you — for real — and screws up your life, the sight of people launching themselves at each others’ heads with the intent to do harm, just isn’t much fun.
Well, enough talk. Time to get on with my (real) life. Onward.
It’s the end of January, and I’m starting to feel like things are moving in the right direction for me, again. This time of year has often had a lot of change associated with it. I have made some of the biggest choices about life changes at the end of January/beginning of February… and I have also had some of the most significant things “just happen” to me — like serious health issues coming to a head, and relationships hitting snags.
Some people would get nervous and pull back. Some people would really think twice before leaving their house. Some folks would probably stay inside and not even look out until well into March, given my history with this time of year.
Seriously — things like winding up homeless on the streets of one of America’s biggest cities… accompanying loved ones to the hospital for extended stays… major job changes… moves across the country… big stuff that not everybody wants to bother with, but I seem to be magically inclined to.
Yes, some people would hold back or find another way to pass the time. As for me, I’d rather tackle it head-on and see what comes of it — see what I can make of it. It’s tax-preparation time. The last of my paperwork should be arriving in my mailbox any day now. Big stuff moving. Big things happening. Skills are getting sharper — I can feel it.
And it’s good.
I spent the morning yesterday (and part of the afternoon) working on a pretty cool skill I really need for my next job change. It came out well. So well, in fact, that I felt confident sharing it with others who do this kind of work. Now it’s out there “in the wild” for all to see and comment on. Hm. We’ll see if anyone notices…
Anyway, even if nobody ever notices and nobody else gets any use out of what I did, I can still use it as an example to explain my approach to people who ask why I do the things I do, and who want to see my technical style. And that’s good for something.
So, things are good. Things are changing. I didn’t get nearly enough sleep last night, but I can always take a nap later today. Flu season really took the wind out of my sails, and I’m still operating at about 85%, best case, but I’m getting there. I’ve been getting up and exercising first thing in the morning, like I used to… and it feels good. Not as crazy-hectic as it used to be — just good.
So, things are changing, and things are looking up. Very much so. I can’t say that I’m overjoyed about how things are going, all around me, but I’ve let go of the stuff I cannot change, and I’m moving on to the things that I can. This working situation has been like a rock in my shoe — it’s not stopping me from moving, but it’s making it awkward and sometimes painful, and it is keeping me from picking up speed. That’s very much how it is – I have no idea, from one day to the next, how it’s going to be, so no sooner do I start getting some momentum, than the rug gets pulled out from under me.
So, rather than cursing this perpetual darkness, I’m lighting a candle. I’m studying. I’m learning. I’m doing. And it’s good.
The days are getting longer, and that means more light. In every way.
This really is my favorite time to change my life.
I spent a little time yesterday at the library, looking through books that summarized things I knew by heart, left-right-front-back-and-upside-down in 2002, which I have really struggled with, since my TBI in 2004. It’s like I have to start from scratch.
Learning all this stuff — much of it all over again — is turning out to be a total trip. It’s like, I can remember a lot of it… faintly… and I know I used to do this on a daily basis, and it used to be second nature to me… but now it feels like I’m in fresh new territory all over again.
I can’t let myself get down about this. I truly can’t. That will stop me from where I’m going. The rest of the world – as far as they’re concerned – thinks I’ve been doing this stuff regularly, and that I’m up to speed. That’s what the recruiters think, that’s what the folks who are hiring think. They don’t see the big black nebula that sucked in my life and skills in 2005… that just got worse, over time.
The weird thing is, I didn’t have real problems thinking and focusing and producing work until around 2007… 2-3 years after my fall in 2004. From 2004 through 2006, I was faking my way through and doing a pretty good job of some rudimentary stuff, and I was passing for competent, because I was doing pretty basic, elementary stuff.
But after 2007, everything just sort of fell apart, and I think a lot of it had to do with me not keeping current on the emerging technologies, because of fatigue and confusion and fog and all the hell that was breaking loose around me. More than the injury, the chaos that surrounded me afterwards, really did a number on me.
That’s all water under the bridge, though. My main concern right now, is getting myself back on track and getting myself to a place where I can feel comfortable and confident in my skills. I’m not sure how long this is going to take. It could take a number of months. But I am focused on what I want to do, and even if I am delayed, I am not going to be stopped.
I have my work cut out for me, but I know where I’m going, and I know what skills I need to build up, so I’m doing just that. I’m keeping concentrated on the specific areas where my long-term interests lie… and that’s a good thing.
So, it’s beginner’s mind all over again. In a way, it’s okay, because a lot has changed, since I last did this kind of work on a daily basis. How can I be expected to be up to speed on it all? I haven’t been in the loop, quite frankly, and I haven’t invested the time in practice, which is what you need to do with this stuff — practice, practice, practice.
I see myself shirking, here and there, avoiding things that intimidate me. But now I see what I am doing, and this weekend I intend to just dive in and do it. Just do it. Take a chance. Re-learn much of what I have lost over the past several years. And revive some of my old projects that were pretty advanced, if I say so myself, until I got scattered and wandered off to do other things that added nothing to my life.
So, onward. Time to rekindle that old sense of discovery and fan the flames… not worry so much about struggling with things the way I do… just keep going and keep practicing. Because one of these days, I won’t struggle with it. And that will be a good day.
Ah yes, once again I (re)learn how I get into trouble when I undertake new things. I get excited about something… the energy builds… and then I get side-tracked by other interesting “shiny objects” which grab my attention, for however short or long a time.
This is an issue. I need to keep steady. I need to keep from getting distracted by every little thing.
Start something, stick with it till it’s done, and keep practicing along the way, so I don’t forget it when I come across something else that intrigues me.
This isn’t just an exercise in entertainment, it’s an essential skill I need to develop.
Today I’m going into the office for the first time in over a week. I’ve still got a cough, but I can’t put this off anymore. Plus, I really need to get active again. All this sitting and lying down and recovering is getting on my nerves.
Should be interesting. Things should be quiet, because most folks are away at a big conference. It’s a good way to get back into the swing of things.
I also have my work cut out for me in updating my skills. The one thing that keeps me going, is the idea that I will not have to be stuck in this situation forever – and I know the direction I am headed in. I have a number of really key things to learn, which I was starting to delve into just before my TBI in 2004, and I’m still burdened with a lot of old confusion and frustration that I associate with those things, because the last time I tried to learn them, I was so out of it and so confused and turned around, I couldn’t manage much of anything.
My brain has definitely changed, since that time. I don’t have the same stamina I used to have, where I would spend hours upon hours on a single sticky problem and be able to stay focused and intent on what was in front of me. I need more rest now. I also have a different way of learning — it’s not that old way of looking at something and then being able to just do it… now I have to really understand what I’m looking at, and I need a lot more practice, to get things.
Or maybe I have always been this way, and now I realize how I really need to learn. Back in the day — to be perfectly honest — I did a lot of side-stepping thorny issues and running for cover — and running away from things that didn’t make immediate sense to me. I faked my way through an awful lot of situations, and in a lot of cases, I just got lucky — without any real understanding of what I was doing… just some mimicry of what I’d seen others do. My approach before was far from perfect, but I managed to sneak by, under the wire, because who would have guessed I was having as many cognitive issues as I was? And anyway, it was easy to keep under cover in the uber-geek realm, because, well, there were a lot of inscrutable, unapproachable folks in the ranks, and compared to some, I looked absolutely sane and serene.
Now things are very, very different for me — I have a better understanding of my own limitations, and I have a better understanding of what I need to do to overcome them. It’s daunting, but I’ve gotta keep at it. Because I need to make a real and substantive change in my life, and I cannot stay where I am indefinitely.
So, there’s my motivation. Plus, the new learning, the new ways of learning — taking things in smaller pieces and really, really focusing on them till I understand how they really, truly work, and doing them over and over and over again, until I can do them with my eyes closed and backwards — it keeps me on my toes and it makes me feel better… not only about my work, but about my brain and my life in general. The job I am in now is mind-numbing and just a little soul-sucking. There’s nothing like learning and mastering new material to brighten my day and make me feel human again.
So, it’s back to work for me — on multiple fronts.
I’ve heard it said that it takes about seven years of recovery for a person to start feeling “like themself” again after traumatic brain injury. That sounds about right to me. And now that I’ve been at it (actively) since 2007, I’m coming up on seven years — next year.
What a long, strange trip it’s been. From nearly losing everything, to sabotaging job after job, to watching my friends go away, to the relationship/marriage troubles and health issues, to slowly building myself back… it has been a trip. But it’s finally starting to feel like things are stabilizing for me.
When I say “things” I mean internal things. Not external things. Learning to live with TBI is like going to sea and learning to walk across the deck of a ship that’s rolling through all sorts of seas. Between the sensory issues, the focusing issues, the distraction problems, the mood swings, the irrational and literal and rigid thinking issues… if it’s not one thing, it’s another, and just getting used to the idea that this is just how things are, has been a battle in itself.
But that’s the deal. This is how things are. And there’s no sense in trying to tamp it all down and get things to chill, because no sooner does one wave pass, than another comes along.
Walking across the deck… yeah. That’s about the best metaphor I can think of. And it puts me in the mood to read some seafaring adventure stories – Captains Courageous, Treasure Island, Two Years Before The Mast… stories I remember from when I was younger, that I really loved and enjoyed. It kinda puts me in the mood to tie knots with heavy rope…🙂
And that’s one thing that the seafaring metaphor does for me — it raises dealing with TBI issues from a hindrance and an inconvenience and a problem, to being just part of what I have to deal with on the “high seas” of life. Rather than turning the issues into problems and vexations, it turns my ability to deal with them into strengths and abilities that I didn’t have before. I’ve been deep sea fishing a few times, and I know from personal experience that “sea legs” don’t just happen overnight. It takes time. You have to learn to roll with it. I’ve never been out to sea long enough for this to “take” with me, but I would imagine that I could learn to do just about anything, given the opportunity and time.
And opportunity and time are just what I have, with regard to this stuff.
Today, I’m pretty dizzy and off-balance. I’m also having trouble keeping focused on one thing at a time. I’m working from home today, giving myself one more day to recoup before I go back into the office, and I still don’t have my full strength back. No surprises there – I was flat on my back for a week, and this won’t fix itself overnight. I just feel “off” today — spacey and tired and weakened. I’ll see how it goes, with getting my work done. And I’ll see how it goes, taking frequent breaks to just get my head settled again.
It’s not so very different from some days when I wake up after days and weeks of not getting enough sleep, and I have to work at my peak level. It’s not so very different from some days when I’m off balance and foggy for no reason that I can tell at all. It’s not so very different from dealing with the light and noise sensitivities, the headaches, the malaise… it’s not very different from that at all. And the emotional impact it has — the frustration, the short temper, the anger, the temper flashes from a very short fuse — that’s very similar, as well.
It’s all part of life on the high seas.
Of course, it’s easy for me to say all this, years on down the line after my latest concussion injury in 2004. At the very start, when nothing made sense and I was dealing with so many, many issues that I didn’t recognize and didn’t realize were a problem, the whole business made me sick. Literally. Like being out at sea for the first time, I was in a constant state of nausea and disequilibrium. I felt stupid, I felt like an idiot, and I felt so incredibly defective because I couldn’t regulate my emotions or my behavior. Everything was falling apart around me, and I didn’t know why. And not knowing made it even worse. Not knowing that I didn’t know… that was the worst thing of all.
So many times, I look at the stats for this blog and I see people searching for “concussion now I’m dumb” or “does concussion make you stupid”. And I remember so well what it was like to feel so stupid, all of a sudden, and not know why nothing was working for me anymore. I seriously didn’t have a clue. I knew I had hit my head. I knew I had gotten hurt. But I had no idea the effects could be as big and impactful as they turned out to be. I thought it would all clear up in a matter of a few days.
How wrong I was.
What I didn’t realize was that each time my head bounced off those stairs, connections in my brain got twisted and frayed, possibly even severed. What I didn’t realize was that those connections had taken a lifetime to put in place, and now that they were disrupted, I was going to need to practice and practice and practice, rehearse and rehearse and rehearse… doing many of the things I used to do so easily, but now had to learn to do in a slightly different way. I almost wish that the differences had been obvious — things like walking and talking. But it was really the little things, like learning and managing emotions and remembering details, that had been disrupted. And those disruptions were even more upsetting, because they weren’t something that others could see or often even detect. The only one who could tell a real difference was me… And inside, I was a torn-up mess.
Of course, years on down the line, I can look back with some perspective and understand what was going on. But at the time, before I learned all I have in the past 6-7 years, I had no perspective. I had no information. And I was going nowhere fast. No, correction — I was going somewhere fast — down, down, down. I’m just lucky that I noticed something was wrong before I went over the edge and lost everything.
Not everyone is as fortunate as I am. Not everyone manages to get it as quickly as I did. A whole lot of people struggle in silence and tell themselves to just push on through… never getting the help they need. And that’s a terrible, awful waste. Not everyone understands that the high seas they are on, are going to always be there… that once you’re on the TBI / PCS ship, you’re not getting off. You may have some calm days, you may have some serene days, but you’ll also have fog and shoals and doldrums… and the storms will always come up again — you can bank on that.
Not everyone is stuck for all time with post-concussive issues, and thank God for that. But for those of us who are, probably the best thing to do is just settle into the daily routine of sailing the high seas… get your sea legs… and get ready for adventure. You never know, you might just come across some treasure, along the way.
Today is my last official day of recuperation from this flu. I am feeling a whole world better than I was, a week ago, and despite the persistent cough and chest congestion, I am feeling up to getting back to my regular life. I may work from home tomorrow, because of this cough, and not wanting to push myself too hard, but I do plan to get back in the saddle and get back to regular life.
This past week has been a real mix of ease and difficulty. It is not easy for me to sit still and do nothing, but I haven’t had the energy to do much of anything – even if I wanted to. I’ve watched a lot of samurai movies, and I’ve slept a great deal, and I’ve done a fair amount of work on one of my little pet projects I’ve been meaning to work on, so that’s something. But my hopes for digging in and getting some headway on some of the new material I’ve been wanting to learn… that hasn’t happened.
Which is just as well. I really needed down-time to just veg and chill and not do much of anything, other than eat and drink and sleep and take care of myself. Up until Thursday, I really wasn’t in any shape to do much of anything, anyway. I did manage to get some errands run, that I’d been needing to do, which is good, but other than that…
Well, at least I’m pretty clear about my work situation — about being really motivated to get the hell out of my present situation, ramp up on my skills, and make a really solid move into a more specialized area than I’m working in now. I need to specialize, not generalize. And I need to get back to doing the kind of work that suits me the best — building things, inventing things — so that I can both do fulfilling work and also command a higher paycheck.
That’s a win-win for me, in a very big way.
One of the most important pieces in all this for me, is the passion element. Imagination. Creativity. The work I am doing now is so profoundly dry, and the biggest challenges to it are around getting people who don’t want to work, to do the work necessary to just get things done. There is more of that ahead of me in my new role in this new organization, too — the plodding, tooth-pulling work of getting people who can’t be bothered, to actually give a damn and do their part. Apparently, I’m really good at motivating people and getting them on-board, so they’re expanding that role… never mind that my greatest joy comes from getting computers to do what I want them to do (and what they are built to do), not wrangling with human beings who can be so adept at avoiding doing what cannot be avoided in the first place.
I need to have some joy in my work. I need to have some pleasure in what I do. So, I’m going to use this opportunity to “slingshot” around this pain in the ass position they are putting me in, and fly higher than I’ve ever flown before. It’s a tall order, I know. But it’s worth it to me. It is so worth it.
Because in whatever work I undertake, I need to have some motivation behind it. I need to have some passion. Because work is… well, work. It’s not always some free and easy walk in the park – it takes commitment and dedication and perseverance, to achieve mastery, and you can’t sustain the energy you need for the long haul, with a lackadaisical attitude and a lax approach. You have to have a steady stream of interest, challenge, delight, discovery… and more… for that payoff, that reward. It’s not just about money, it’s not just about prestige. It’s about being fed a steady stream of interest and improvement and insight, to keep the fires burning, to keep the light lit.
It’s this way with anything and everything that you seek to master — whether it’s a programming language, or a musical instrument, or a chess move, or a series of tasks you’ve been assigned at work, or recovery from a near-catastrophic injury. You’ve gotta have fuel for your fire, in order to do what you need to do. You’ve gotta have a regularly renewed source of strength and inspiration, to keep going, even when things look like they’re at a standstill. You have to find a way to tap that root of strength and perseverance deep down inside you, so you have something to rely on when everything around you seems lost.
This has never been more true for me, than now. The stakes have never been higher with me, and I’ve never had so much to lose – or to gain. Back when I was first learning all this technical stuff, I was intensely motivated because the job I was in, was nothing short of hell. It was just a terrible, terrible situation – and I knew I had to get out. So, I set about learning the things I needed to learn, to get the hell out — and after about a year of really focused attention and work, that’s exactly what I did.
Now, I find myself in a similar situation to before, but this time with more issues — and more baggage, as well. Just a few short years ago, I struggled to read and comprehend much of anything, my distractability was off the charts, and my spoken communication abilities were really suffering. I got overwhelmed and exhausted and ended up living in an endless chain-reaction, rather than deciding on my own direction.
I really got lost. I lost touch with what I wanted to do with myself, I lost touch with the direction I wanted my life to go, and I became so deeply embroiled in the simplest of everyday struggles, that I didn’t have any energy left for taking steps to extract myself from that situation. I didn’t even have the energy for figuring out what I needed to extract myself from.
Things are different now, though. Things are shifting and changing, and thank GOD the jerks up the chain of command have quit… one after another… so their static isn’t constantly messing with my head and sucking the life out of me. The simple fact that I don’t have to deal with that psycho-craziness makes this transition easier to make. And the simple fact, too, that I have been at this job long enough to not look like a “jumper” when I quit, makes it easier to entertain other possibilities.
So, extra stress has been removed, soul-sucking distractions have been removed, and that frees up a lot of energy I need to direct towards constructive activity. I can accept that I am where I am for the time being, and I can just let that be — as I move towards where I want to be. With all the changes going on at work, there’s also less impetus for me to be obsessed with creating ideal outcomes, because the Folks In Charge have pretty much removed that ability from our grasp. Everything sucks at work, right now, and that’s all there is to it. But in a way it’s a relief, because now I don’t feel so compelled to try to make everything All Right. ‘Cause it’s just not gonna be that way – now or anytime soon. The Folks In Charge have pretty well seen to that.
So, I’ve let it go… once and for all. And it feels pretty good. I just show up at work, do what they ask me to, and make the best of things, while I’m designing my escape on the side. They can do what they want. It doesn’t prevent me from doing what I want. And rather than cursing the darkness, the little candle I am lighting and keeping going, will guide my way home.
This actually is a very exciting time. I have a lot of work ahead of me, but I have a lot of energy and motivation. Unlike the past, I have a path forward I know I can take. It won’t be easy, and it’s going to take a lot of work, but I can do this. I can do this. And with one more day of rest and recuperation ahead of me, I think of my future with hope.
Since I’ve been down with the flu this week, I’ve had a lot of time to think about how different sorts of people get — and respond to — different sorts of treatment. This can be for flu… or it can be for traumatic brain injury / concussion. The basic paradigm is the same, across the board, I believe. And it’s something I think we really need to consider, when it comes to treating TBI / concussion.
One thing I have noticed, over the course of my life, is how I am often at odds with my doctors over being self-sufficient… to the point of being considered a “risk taker” with regards to my health. This includes doctors, dentists, neuropsychologists, therapists, nurses, etc. The thing they don’t seem to understand, is that this is how my whole family is – has always been.
See, here’s the deal – even though I have spent half my life in cities and half in very rural settings, I come from a rural family. I mean, frontier-rural — prairie rural. My great-great-great grandparents (on both sides of the family) were some of the “sod-busters” who moved out into the newly opened prairie (my apologies to the Native folks who were driven off — I am really deeply sorry for what was done, and it’s a little horrifying to me that my ancestors benefited from your terrible losses).
Before them, too, my ancestors were adventurers and explorers who traveled far and wide throughout the European world, and lived on the margins of “mainstream” society. They were self-sufficient. Because they had to be. Same with my great-great-great grandparents. They lived miles from the nearest doctor. He was usually a day’s wagon ride away. If you fell or got sick, you had to make do, until he got there, or for as long as you could.
Sometimes you couldn’t even get a doctor.
Given this fact of life, my family — both sides of them — had to develop a self-reliant quality that would keep them alive and keep them from depending too greatly on professional help for their daily needs.
Contrast this with folks in cities or other developed areas, where you can get to professional help within hours, if not minutes. In a city, or in a developed community, the challenge is not keeping yourself alive, it is learning to communicate the details of your ailment/need to the professional who can help you.
Now, let’s fast-forward through time to today — when I am still as independent as anyone in my family, and I look for solutions of my own to issues I face. My doctors/providers approach me at times as though I am “hostile” to their help, when all I’m doing is having the same orientation of independence that folks in the middle of nowhere have to have. I also live at some distance from the nearest hospital I trust implicitly, so I have to choose carefully when and where I get my medical care.
It’s not that I am uncooperative or hostile. I am rural at heart. Self-sufficient by nature. I am my great-great-great grandparents’ offspring (aside from the Native antagonism), and that’s how I stay alive. It’s how I always have, and it’s how I really feel I have to be, to get by in the world. But when I try to communicate with my doctor, they seem to think that I am being intentionally difficult, simply by needing to stand on my own when I can. I have to be able to function without leaning on everyone around me — which is the way that you can be when you’re in an urban environment; social interaction and interdependency is built into your dna. I’m not knocking leaning on others. If you can do it reliably, then fine. But with me, depending on others can very well shorten my life needlessly, if I disregard my own judgment an the signs I see about my own situation.
The other piece of this, which I think needs to be factored into adequate TBI / concussion care, is class. I’m not talking about taste and money, but the way in which you work and live your life. Working class folks have different ways of interacting with authority figures, than professional class folks do. I think Malcom Gladwell made a really going point of it in his book “Outliers” which is about people who do exceptionally well in life. He points out that people in professional classes are taught (sometimes from a very young age, if they’re born into it) to interact with “authority” as peers, rather than subordinates, while working class folks expect authorities to offer them guidance and direction and clear instructions on what to do.
When you “occupy” a certain class, it’s like you occupy a certain “geography” – and I would wager to say that being part of the professional class is like being urban/suburban in nature. You have more money, you have more access to other professionals (by social association as well as perks and benefits with work, etc), and you are more interdependent with others, from service providers who care for your house and your property and your money and your health (in all its manifestations).
When you’re working class, however, your world is different. The scenery is different. You have different types of friends and acquaintances, and different levels of access to different aspects of life. And you have to be a lot more self-sufficient, just as you do when you’re rural. You don’t have the same amount of money that gives you instant access to certain services and assistance, so you either have to do without, improvise, or find alternatives. That applies to every aspect of life, including health care.
And here is the big disconnect I see between the kind of help that’s offered to TBI / concussion survivors and the providers who seek to help us. At least, this has been my experience… The doctors I know and have worked with over the years have often come from urban or suburban backgrounds. And they obviously are members of the professional class. As such, even if they grew up in urban surroundings, they are now part of a class that is by its nature geared towards interacting with other professional class members as peers, rather than as superiors/subordinates. So, when folks come to them asking for help, and those folks are from working class or rural backgrounds, the docs don’t always ‘get’ what’s expected of them in that relationship. Either that, or the docs aren’t willing to meet their patients half-way with language and communication that bridges the gaps in class and background.
A prime example is my own experience with my PCP – I have a great doc, who it took years for me to find. They have my best interests at heart, and they are very personable towards me. They clearly want me to be well, and we have had some great exchanges. But they just don’t get my need for self-sufficiency. And they seem to think that my wish to be independent and self-sufficient is a sign of distrust of them and/or our relationship. They see my reluctance to get flu shots as being stubborn, when my real rationale is that it’s just plain unhealthy for a human body to not build up its own resistance to heavy-duty infection (as unpleasant as the building up process may be). They interpret my need to call the shots in my own life and make my own health decisions, as disrespectful of their expertise, when it’s just me exercising the very essential mental muscles, so that I can have some say in my own destiny. It’s a little problematic for our relationship, and I need to do some clearing up, when I get a chance.
I may get this chance on Friday. Or not. But whether I do or not, it’s always going to be a factor with them. On Friday, I hope to ask them if they were raised in a city or in the countryside. That should shed a lot of light on the dynamics. We’ll see how that turns out.
In any case, I think especially when it comes to post-TBI care (be it medical or ongoing rehab), the socio-economic background of the individuals involved needs to be factored in and adapted to. This is something that every medical school should teach, in my opinion, because teaching young doctors to realize the differences between individuals based on class and where they live, could truly transform the doctor-patient relationship – especially with regard to such gray areas as concussion / TBI.
Specifically with regard to concussion / TBI, I think it would make sense if there were different ways of instructing Emergency Room visitors to handle TBI recovery. Instructions should be phrased differently, based on the person — not over-simplified “d’oh” language for hayseeds, but plain English for those who need that, versus more technical explanations for those who need that. The English language offers many different options. We should use them all, in explaining proper TBI care to patients who desperately need it.
Beyond immediate medical response and care, I’m sure there are elements of rehab that could also be modified to accommodate different classes and geographies, but I don’t know enough about them to speak to them. All I really know about is dealing with my own doc who seems to think they know enough about TBI and don’t need to factor that into my overall healthcare, let alone discuss the impact it might have in individual circumstances. TBI and the issues that arise from it touch on every single aspect of my life, yet my doctor just seems to dismiss it. And when I bring it up, they just get nervous — perhaps because it’s not something they can fix with a pill or a prescription. And it’s also not necessarily something they can bill insurance for. If they can’t bill for something, they’re not going to spend the time. It’s not that they’re negligent — they are under pressure from their practice to log truly billable hours. I’ve seen that first-hand, and it’s not pretty.
I think, in the end, there are significant aspects of our lives which are not getting due respect, because they’re concealed beneath the layers of socio-economic bias that separate so many of us. And nowhere is it more visible, than in healthcare — particularly in care for those who have sustained TBI / concussion. People who do rough, dangerous jobs stand a greater chance of sustaining a traumatic brain injury, than those who sit behind a desk all day. And those who do rough, dangerous jobs, tend to not have Ph.D. after their names.
What’s more, out in the country where you’re living a bit closer to Mother Nature than when you’re in town, you’re more exposed to the kinds of events that will get you hit on the head. Farming accidents. Building accidents. Hunting accidents. ATV accidents. Falls. Tornadoes. Storms. Floods. Sinkholes. The list goes on. And if ever there were a need, it’s for people with the power and influence to provide advanced medical care, to make it more accessible to those without the letters after their names and the zeroes a the end of their salaries.
I’m not asking for hand-outs or charity. I’m just asking for common sense. In the end, access to quality care isn’t just about proximity and availability, it’s also about interpretation and understanding.
Sometimes, understanding is what we need the most.