Sitting tight and getting my priorities straight

So, I got the job offer last week. Friday, while I was running errands, the recruiter called me and let me know that the company wanted to bring me on as a contractor first, then potentially hire me permanently.

And it gave me pause. It was actually happening. I was actually being presented with a job opportunity that I’d pursued, that had actually gone well, interviewing-wise, and was about to deliver exactly what I was looking for, career-wise.

Except…

The commute would have been about an hour each way. That is a huge discourager, because I already have fatigue issues, without risking my neck on a commute into some of the worst traffic in the area. No thank you.

I wouldn’t be able to work remotely whenever I want. That’s another huge problem, because sometimes I can’t make it through the day without a 20-minute nap. And the idea of having to drive in, every single day (except on those occasions when I have an appointment), drag my a** through the entire week, and then deal with evening traffic in terrible rush hour conditions… Yah. No.

I have no guarantee of what the ultimate terms of employment would be. I don’t know what salary they’d offer me, exactly, and I don’t know what benefits they’d have, what the vacation policy would be, what kind of accommodations I could get to keep functional… As much as they made it sound like I was practically guaranteed a permanent spot, there’s no guarantee of that, and I’m just not prepared to take that chance.

They’re not paying me what I’m worth. The recruiter was very cavalier about telling me the parent company typically doesn’t pay the full market rate, and I’m sick and tired of being told that. The thing is, over the years, one position after another like that has set me back. Because everytime you start to negotiate salary, they start from where you are currently. And that puts me at an immediate disadvantage. I’m sick of playing that game and losing, over and over.

When I did the math, the whole deal just looked worse and worse. I’d need to cover my own insurance for 6 months, my commuting costs would go up, and lifestyle issues just canceled out any benefit I’d get from the technical boost. It just didn’t pan out. If anything, it would have been a step back, which is something I’ve done far too often in my career.

For the past 10 years, I’ve had to make accommodations for my employers and grant them concessions because of my TBI issues. I’ve had to pass on really great jobs, because they demanded too much. Or I had to leave okay jobs because my health was suffering and I was shorting out. But at last, I’m working at a place where I can build my own accommodations into my job, and I’m a “known quantity” in the ecosystem.

So, it’s really not so bad, after all.

And I’m staying put. I’m better off at this company and exploring job options within its vast corporate complex, than venturing out in to the rest of the world, where everything is a big question mark.

That’s one thing I’ve figured out in the past few days.

The other thing I’ve figured out, is that I need to quit worrying about developing commercially viable products on the side. I’ve tried to “monetize” my blog, I’ve started websites, I’ve launched initiatives, I’ve written eBooks, I’ve dug into all sorts of entrepreneurial modes of working and thinking. I’ve been pretty focused on doing that for over 10 years, because I didn’t feel like I could really function in the 9-5 business environment as it existed. The long commute. The long hours. The rigid rules and office politics. It just sucks the life out of me.

I was right. I can’t function in those conditions. But the solution is not to strike out on my own to make my own way in the world, launch startups, forge a new path through the jungle, etc. Rather, it’s to find a decent steady job situation that gives me the stability, insurance, paid time off, and flexibility in hours that allow me to function at my best.  To have the best of all worlds. And quit worrying about all that work-for-myself intensity that I’ve been wrapped up in since 2006.

I’ve found a situation that works for me now. Who knows how long it will last, because supposedly they’re laying off a lot of people. But the part of the company I’m in, isn’t one of the ones where there’s a huge amount of redundancy. And anyway, getting laid off would involve a package of some kind, so that will be helpful.

But whatever. Bottom line is, I’m taking the pressure off myself and ditching the whole go-it-alone mindset. I realize it’s taken a lot out of me, to constantly be pushing myself on my side projects, and it’s consumed a lot of my time that I could be spending on things like blogging here and just enjoying my life. Catching up on my reading. Actually thinking about stuff at my leisure. I used to do that, before I got caught up in the whole entrepreneurial craze, and I miss it. I want to just relax, for once. More than anything, I need to wean myself from the whole stress thing, give myself time to breathe, and develop the habit of just living well.

Writing what I can here. Minding my own business. Taking care of my home and my health. Getting strong and healthy for the long haul. ‘Cause in the end, nobody’s really going to take care of me like I can. Nobody else knows what I need, like I do. And I’m done with chasing castles in the sky.

I’ve got my own realm here on the good earth.

And there’s plenty to occupy me here.

Second interview, second thoughts

I had an in-person interview for a new job on Friday.

All in all, it went well, I think. We seemed to connect well, and it’s the kind of work I want to get back into. I pulled together an updated portfolio of my work in a big hurry on Sunday morning. I had a lot to do, this past weekend — including an all-day event on Saturday and a ton of yard work and other chores on Sunday — so I didn’t have as much time as I would have liked.

But I got it all together within a few hours on Sunday, and I’m fairly happy with the end product. It also lit a fire under me to really pull together a good portfolio of my work. That’s the one thing I’ve been missing, all these years. To be honest, I never actually needed it before, because at the level I was operating at, and based on the companies I’d worked for, everybody just knew I could do the job, hands down.

Now things are different, though. We’ve got all kinds of people making all kinds of claims about what they can and can’t do, and the job market is glutted with posers. So, a portfolio is the first and last line of defense for both job seekers and employers.

Even if the job doesn’t work out — and I suspect it won’t, because I believe they have an open work space floor plan, and that doesn’t work for me. I’m a really “visual thinker” and rely on the part of my brain that processes imagery to do my job. So, if my line of sight is not blocked and I’m constantly being visually interrupted, I can’t do my work.

I learned that lesson loud and clear years ago. And I’m not going back to any environment that’s even remotely “open workspace”.

I’m also not a huge fan of long-ish commutes. My commute right now is pretty good, and the route also includes a number of stores, so I can shop on my way to and from work, without disrupting the rest of my schedule. That matters. It makes a huge logistical difference in my life.

I also can’t work full-time in an office. I need to work from home at least two days a week. I might need a nap, and I need to be at home for that.  Additionally, not having to drive my car every single day makes a big difference in my fatigue levels, as well as the cost of fuel.

Plus, the company wants me to come on as a contractor first, then get hired. I’m not sure I’m okay with that. It leaves a lot to chance, and while they may say they’re stable and supported by their parent corporation, I’ve been around long enough to know how quickly that can change.

Anyway, I haven’t heard back from the recruiter yet. Who knows what will come of it… But if it doesn’t pan out, that will be a relief, too, because I won’t have to make any more changes for a while. I can sit out the holidays and take my time off… and not worry about anything other than a few little projects I have going on.

That, and building out my portfolio.

Who knows what will happen? It’s impossible to say. But whatever happens, it’ll work. I’ll make sure it does.

Getting my body back, too

I’ve been concerned about falling, for some time, now. I get lightheaded and dizzy, and I sometimes lose my balance when I’m tired or I’m distracted (which is often how I feel). I’ve seen a neurologist about possible neurological bases for this, but the MRI didn’t come back with anything meaningful that they could do anything with. Also, I don’t have a condition they can diagnose, so they can’t bill the insurance company, which means I can’t get much in-depth help from them. They need to pay their bills, and if the insurance won’t cover what they’re doing for me – and I certainly can’t cover it all – then nothing’s going to get done.

Which kind of sucks.

But frankly, it doesn’t surprise me. I have been steering clear of neurologists for some time. Only after my neuropsych encouraged me to dig deeper, did I agree to try again. And the one they referred me to moved out of state, so that’s that. This one was another good prospect, they thought, but my experience is turning out different from their expectation. No surprises there.

I’m going back in another week to follow up and put this whole thing to rest. All they can tell me is that I’m probably not sleeping enough, which my old neuropsych thought was “preposterous” – but I can kind of see their point. When I’m tired, my brain doesn’t work as well. And balance is very much handled in the brain. So, fatigue could conceivably be a source of imbalance.

Still, there’s no guarantee that I’m going to ever actually catch up on my sleep and feel fully rested. I wear out easily, and I don’t have a life that allows me to get naps when I need them. Not yet, anyway. I’m working on that.

Anyway, I’m not going to get all bent out of shape about it. I’m meeting with a wellness coach/personal trainer at work today. That’s one of our employee benefits – an on-site wellness consultant – so I’m going to take advantage of it. I’m going to see if they can tell me some things I can do to strengthen my overall system, to give me better balance, physically speaking.

Think about it — the body moves as a result of muscles coordinating their movement. And keeping your balance really involves a lot of muscles. I sit and stand — stationary — for most of the day, every single day, so I don’t use those muscles as much. And that’s no good. So, I’m hoping they can show me ways to strengthen, as well as get more flexible — that’s another piece of keeping your balance.

I’m also working on really improving my sense of my own body and where I am in space. I get pretty banged-up from doing yardwork and chores around the house, because I run into things (but don’t realize it), and then I end up with bruises from impacts I can’t recall. I’m so focused on what I’m doing, that I don’t even notice the impacts. So, yeah, there are two things going on there, but I’m thinking that if I can at least improve my sense of where I am, relative to sharp objects and hard surfaces, I can possibly look a little less like I got in a bar brawl, after I’m done cleaning up the yard 😉

The way I’m working on that, is by really paying attention to my body during the day – noticing where I’m tense, and focusing on relaxing it. I’ve been watching videos of Systema — a Russian martial arts practice that centers around breathing, relaxation, and body awareness. Some of the things that they do in the videos are amazing — and the folks doing it aren’t these monster-ripped superheroes who overpower their opponents with sheer force. They’re average-looking folks who you’d never expect to be able to do the things they do. Because they know their bodies, and they relax and let themselves just respond to the situation.

I don’t think I’d ever do Systema training, because of all the hits and the falls. I’ve had enough of them in my life, already, and I don’t want to push my brain’s luck. But I did get a book from them a while back about breathing and improving your body sense, and I’ve been reading that on and off, over the past year. I’m getting back to it, now, and it feels pretty good. Just getting a better sense of my body, how it moves, how it feels when it moves… when it’s tense… when I need to breathe… it’s good.

It’s also helping me sleep. I get so caught up in my head, that my body can’t catch a break. So, focusing in my breath and also trying to feel each and every bone and muscle in my body, and relax as much as possible… that gets me into a relaxed state that gets me “down” before I can get halfway through. I’ll start at my toes, and by the time I’m at my knees, I’m out.

And that’s great. I used to do this all the time, then I stopped… and I forgot about doing it. That’s one thing I’m working on, these days — trying to follow through and not drop things before I finish them. Or, if I do get interrupted, make a note of what I’ve been doing, and keep that note where I can see it and remember it. I just remembered another project that I was making amazing progress on… then I got interrupted, and I forgot about it… and I ended up heading in a completely different direction.

Months later, I suddenly remembered it last night, and sure enough — there it is, waiting for me to continue working on it.

The breathing and relaxation stuff is just the same. I’m making great progress, then I get distracted, and I head off in a different direction. And I forget about what I’d been doing — and it ceases to exist for me.

So, I lose the benefits I’ve been getting from it. And I lose that part of my life. I slowly drift back to my old ways. I start having the same problems that I had before, and I wonder why I keep ending up back where I started… all over again… when I was making so much great progress.

It’s discouraging. So, I need to do something about that.

And so I shall.

Onward…!

Another job interview – another chance

Okay, this is going to be interesting.

I have another job interview today, and I am incredibly dizzy. It’s insane.

I’m supposed to be at all these calls today and have all these meetings before I leave the office, but I am very, very dizzy, and I’m not feeling like myself.

Maybe I will work from home until later today, when I have to leave for my interview. That will solve a number of issues

1. having to get myself going, when I am dangerously dizzy
2. changing from work clothes into interview clothes without attracting attention at the office (I could just drive home to do it, but that will add considerable time to my drive)
3. leaving the office conspicuously early and having to explain why

So, a work from home day, it is. I can make sure I’m clearing out the allergies that are making me so dizzy — a little exercise, plenty of water, taking things slowly…. and then get suited up for my interview with plenty of time to spare. Fortunately, I’m able to do that, because this is a great opportunity for me to move forward, not just stay comfortably in one place.

Again, thought, staying comfortably in one place is fine, because it will allow me to finish up some projects that have been lingering. I really need to sort things out with them and just get some of them done. Enough, already. I need to free myself up from them and move on.

So, lots of opportunity… and a handful of challenges. It’s all good, actually.

Onward.

Actually, that was probably a migraine

I was really in bad shape yesterday – not able to handle hearing people talk, feeling a little drunk, dazed and dull, and generally not in good shape.

We picked up the new (to us) car and drove it home, then realized that there was a CD stuck in the CD player – perhaps warped from being left in a hot place.

So, I need to contact the dealer to get that checked out.

Anyway, on a hunch last evening, I took some migraine medicine, and voila — no more problems hearing and listening and dealing with everyone and everything around me.

Now I know for next time. Here’s hoping I have the presence of mind to get that.

TBI Recovery – like life on the high seas

Avast there…

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.

Ahoy….

Getting my life back, one detail at a time

I’ve been thinking a lot, lately, about how I’m managing to get my life back. It’s taken me a few years, and it hasn’t been easy, but I do feel like I’m finally getting to a place where I can really live my life just as me, instead of focusing mainly on overcoming all my hardships.

Now, mind you, the hardships have not completely disappeared. For the past week, I have been almost dangerously dizzy, and I have not felt well. I have not been sleeping as much as I need to, and my head has been filled with a fuzzy fog. It still is, in fact. I’m also a bit dizzy, still. And I don’t feel well. If I didn’t have to go to work today, I wouldn’t.

But even in the midst of not feeling well, being incredibly off-balance, and not knowing what I could do about it — apart from eat less junk food, get more sleep, and take my time doing things I can normally do quickly — I’ve still managed to do some important things. I’ve been talking to recruiters, looking for new jobs, and visiting an old friend who lives several states away.

There hasn’t been a lot of difference, lately, between how I feel now and how I felt three years ago. I had tons of balance issues, then — they appeared to be diet-related, and when I changed what I ate, the vertigo pretty much went away. The big difference now is that I am aware of the issues, and I’ve developed coping mechanisms to deal with them. I’ve got a lot of tools I can use to get through my day, even if I’m incredibly dizzy, off-balance, nauseated, and bone-tired. I may not be able to prevent these experiences from happening, but I do know how to manage them.

And I do manage them.

I guess this is the difference I see between my own TBI recovery and what I’ve heard others talk about, especially in terms of having to accept limitations and change your expectations of what life has to offer. I do believe that some of what I’ve got going on  — the sensitivities, the fatigue, the constant restlessness, and more — may be with me for the rest of my life. But I also believe that I can manage them, rather than letting them take over my life. When I focus on my goals and intentions of what I want to achieve in life, and I make them the primary focus of my life, all the extra things that get in the way have a lot less power over me. Realizing that my problems don’t have to stop me — that I can come up with new and different ways of handling these things — has been a huge part of my healing.

I do say “healing” because that’s what has happened, which has made my recovery possible. Finding a way to, first, understand what was/is going on with me, and second, to constructively approach those things, has been like a balm to my spirit, and it’s made so much more possible in my life.

I really have my neuropsych to thank for a lot of this. And also people who work with PTSD and cognition and recovery and rehabilitation. I have a lot of people to thank, as well as all the readers of this blog, who have kept me going through the past months and years. So, thank you. 🙂

Anyway, speaking of getting my life back, I have a meeting in 10 minutes, so I need to wrap up here. I guess the point I’m trying to make is that I am getting my life back, and it’s been a gradual process, focused on handling one thing at a time, one challenge at a time. Just learning to know what my different issues are — working my way through the 84 different things that can come up, and addressing each one, one at a time… or two or three or four at a time. But you get the point — it’s been incremental, really. My progress has been “all over the map” at times, but then, organic stuff usually is a bit messy and imprecise. There’s part of me that wishes it were clean and clinical and controlled, but that’s not likely to happen.

So, I’ll take what I can get, and get on with the day.

And keep on getting my life back.

Deadline’s done. Now, back to life.

All set

So, that’s that. The project is finished and now I get my life back. There are a few outstanding things to take care of, but other than those, we are good to go. And my regular life and regular schedule can resume.

It’s been a huge challenge, putting massive demands on my head and my body. It’s going to take me days, if not weeks, to get back to equilibrium again, but it will happen. Sleep will happen. Relaxation will happen. Good food and rest will happen. I did good work over the past months, and now it’s time to sit back and replace the resources I depleted.

And replace them, I will. With long, deep breaths that take in all that life has to offer around me. The scents of the autumn rains starting early… the sounds of swollen, dangerous rivers roaring past, through, over vulnerable, immobilized towns… the odor of pungent rot on a forest floor going through its cycles of death and revitalization… the sight of the finished project on the computer screen in front of me, actually live and moving and making its presence felt in the world beyond my desk… It’s all part of it. All wonderful and terrible and joyful and horrendous and as invigorating now as it was excruciating then.

My head is aching, and I’m still dizzy and feeling sick to my stomach. Breakfast as usual didn’t calm things down, nor did second breakfast. I’m a little more stable than I was at 6 a.m., but I have a ways to go before I build back up.

But build back up, I shall. I know my nervous system is pretty fried. I’m strung out, and I need to get back to rest-and-digest, out of that fight-flight cycle that’s been dominating my life, lately. I need to take in, not just spend and expend and go-go-go. I need to feed myself again, after starving myself for weeks and months. I need to feel something again, not just think-think-think.

And so I shall. And so I do.

See, here’s the thing… All the running is very well and good, but so much of it is just plain anxiety – not knowing, not being sure, not certain, being afraid of getting it wrong, being afraid of being penalized for getting it wrong, not feeling any leeway to screw up and live to see another day, not feeling like “I can do this”… not feeling up to the job at hand… not feeling up to much of anything. Tired, tired, and more tired. Because I’m running.

And half the time I don’t even realize it.

An amazing thing happens, though, when I realize this. When I am present and aware that this is what is going on with me, it ceases to have a hold on me. And I can choose how I want to handle things. I can choose how I want to react to it — get away from the fear, get away from the anxiety, and just settle in to take care of the things that are making me anxious and fearful.

And get some perspective. Open my mind, open my heart. Sit and listen. Spend some time talking to people I never get the chance to talk to. Spend some time reading the words of writers I used to love, who were lost to me for a number of years after my last TBI, because I couldn’t handle reading. No I can read again. And I find myself coming back to the words of writers I used to love — getting inside access to the spirit that moves them, the spirit that moves us all…

That spirit, that heart, those words… they feed me. And it is good.

Even when things were crazy and busy and frantic, they were good. It’s not a bad idea for me to push myself, now and then, and learn from it. I’ve learned a lot, namely, that I can push myself and I won’t fall apart. I’ve held myself back a lot, over the course of my life, thinking that I couldn’t handle things, when I never gave myself a chance. Things are even more challenging now, because I’ve got this brain stuff going on. But I’ll be damned if I’m going to let life pass me by, because of what I think I can or cannot do. If I try something — pour myself into it with all my might, and I fall flat on my face — or worse, on my head — then I learn. I would rather test my limits and take my chances, than only play it safe.

Granted, it’s no good to put myself in harm’s way. That will never do. But the real limits of what is and is not possible for me, aren’t always true in my mind. It’s a skewed up, screwed up hodge-podge of conceptions I have about myself and my life, and while I do acknowledge I have issues and areas I need to watch out for, the fact remains that there are also areas I am too careful about, and when I push the limits of those areas, I learn a thing or two.

Some of the things I learned are that dogged fatigue messes with my mind and memory and equilibrium like few other things do. But I also learned that — for a time — I can prevail and draw on reserves I don’t normally draw on. I also learned how dangerous it is to drive when I am that tired. I didn’t wreck, but I got lucky. I also realized, from reading the writings of people from almost 100 years ago, that people have been pushing the envelope of human experience for an awful long time. They get hurt, they get banged up, they get injured, they get concussions. They have all sorts of aches and pains, migraines and arthritis and dizziness, and more. And yet they keep going. They have always kept going. And some people have done a better job of taking their pains and traumas in stride, than others.

Whatever we do, however we do it, that’s life. We go through terrible times, and we suffer. We ache and we thrill and we keep finding out where the sharp edges of life are jutting out to snag us as we pass. We bleed and we vomit and we collapse from exhaustion. But we go on. And in the end, sometimes it does a body good to push it that far. When we push too far, we find out. For sure, we find out.

The thing is, as hard as we push ourselves, we need to allow in the goodness that life has to offer. I think that may be the biggest difference between how we are now and how we used to be, 100 years ago. Now, we are never, ever satisfied. There is always something else we need, something else we desire, something else we cannot live without. And we push ourselves without ceasing, ignoring the circadian needs of our bodies and souls, never stopping to appreciate the good that comes to us, always thinking that the good we have is simply not enough. It is never enough for some of us. And we put all sorts of conditions on our happiness, making our innermost selves eager victims of our own appetites.

Things come, things go. And we force ourselves to suffer, against all good sense and sensibility.

But I guess that’s just life.

But now, it’s time to sleep. Work will be waiting for me when I get up again. But for now, I need to rest. Relax. I may read, too. But mainly, I’ll sleep.

How little things get big – balance issues

TBI Vestibular Cascade (click to enlarge)

You know, when I fell in 2004 and smashed my head on the back of those stairs —bang-bang-BANG– and I got up from the fall and sat myself down at the table in the next room to collect myself, I never in all my life thought it would make the kind of difference it has. It’s crazy. It’s not even like I was in a horrific auto accident or I was in an IED blast or I was shot in the head. I just fell down the stairs, right?

Big deal…

Except that it was. It started out small, then turned into a big deal. Who knows what was going on inside my skull at the time? Who knows if there was some swelling? Who knows how many neurons fired so wildly that they died off? Who knows how much protein and other substances leaked out into my brain to fry my connectors? Who can say? The difficulties I experienced were NOT huge deals. Yes, I had a hell of a headache. Yes, I was disoriented. Yes, I was more quiet than usual. But it was just a fall, right?

This is one of the most problematic aspects of mild TBI — the issues that come up may not seem like a lot, at first blush. But cumulatively, and over time, they can usher in a lot more complications that just screw everything up. It’s not so much that I had these significant issues, like not being able to walk or talk or remember my name. The issues were much more subtle, and that made identifying them and dealing with them that much harder. If you don’t know something’s wrong, you can’t fix it, and I had no idea that anything was wrong for years.

In that time, I managed to lose a really great job that was a “no-brainer” for me and looked like a very promising long-term engagement. I managed to make a handful of really dumb job decisions, and I managed to spend just about every penny of my nest egg, to the point where, six years later, I’m just now starting to not live paycheck-to-paycheck, and I’m just now starting to get out from under the huge debt load I acquired over the years.

The thing about mild traumatic brain injury, is that it sneaks up on you. It introduces a hundred little variations to your life, all of which individually would not seem like such a big deal, but together can throw you into a tailspin that some people never come out of completely.

The worst thing is, even when you learn to deal with the tailspin, it’s awfully easy to forget and lose track and end up doing and saying things that get you into trouble. On a certain level, you know it, but you can forget…

Take for example, a simple thing like being off balance. I’m not talking about the kind of vertigo that has people falling over in public places or unable to leave their homes. I’m talking about just feeling off balance all day, every day, and never being able to get away from it far enough to regain your balance – literally or figuratively.

If there’s one thing that’s wreaked havoc in my life like nothing else, it is balance (vestibular) issues. It’s crazy, how much they have affected my life and screwed so much up. Now, I’ve talked to doctors about this over the years, but my problems were never enough to warrant heavy-hitter drugs (and the ones they prescribed to me, like meclizine) didn’t help at all. They just made me foggy, which is about the last thing I need. Comparatively speaking, anyway, my balance problems are “mild” — when considered just in and of themselves. But in the context of my whole life, and cumulatively, they can be a real (excuse me) bitch.

Here’s how the “TBI Vestibular Cascade” plays out with me

* Falls, injuries in the background

o TBI – multiple TBIs, actually

+ Cognitive impairment – not huge, often not noticeable, but enough to be a real pain in the ass that throws me off

+ Behavioral issues – can be a problem, especially when stressed – fatigue feeds agitation which feeds anxiety and irritability, which can spiral into rage in an instant’s flash. Not good.

+ Emotional issues – ditto

+ Functional impairments – like physical issues – sensitivity to light, sound, touch, and of course, being off balance

# Vestibular instability (feeling off balance most of the time)

o Proprioceptive disorientation – not being able to sense where my body is in relation to other things

o Experiential issues – keep bumping into things

o Spatial – see above

o Visual – so busy trying to keep upright, I don’t see things that are right in front of me (inattentional blindness caused by focusing 100% on keeping my balance)

o Taste/Smell – either non-existent or pumped up to 300% because of stress

o Tactile – see above

o Cognition – disorientation stresses me and cuts in on my cognitive resources… just can’t think

+ Learning – and because I’m having trouble thinking, I have trouble learning

* Sensory extremes – examples below:

o Visual – I’m so off-balance that all I can think about is staying upright, which means I don’t see things that are right in front of me, because of inattentional blindness, or perceptual blindness, “the phenomenon of not being able to perceive things that are in plain sight” which is caused by focusing 100% on keeping my balance. I am so busy attending to my balance issues, that I literally have n

o bandwidth left for seeing what’s in front of me.

o Spatial – Ha! When I’m off balance, I have a tough time figuring out where things are. I bump into things, knock things over, break things. Stressor…

o Tactile – see above

o Taste/Smell – When I’m stressed over my balance problems, I can have taste/smell that’s either at 300% or is non-existent. It’s unpredictable. And annoying. Another stressor, depending on the circumstances.

o Experiential – I’m having a really tough time, and I’m struggling to keep up… because I’m struggling to keep upright.

o Learning – it would be nice if I had the bandwidth to learn, but I’m in the process of trying to keep myself from falling over, so I’ll have to learn another time.

o Cognition – with the stressors of physical issues, my cognition is really impacted. I just can’t think. A lot of it, I think, has to do with being so fatigued from my physical issues, that my mental facilities are impacted.

o Sensory inattention

+ Sensory muddling – sometimes nothing makes sense, it’s all a big mish-mash of “stuff” I need to sort through.

+ Misinterpretation of clues – and sometimes I get turned around by all the stuff I’m sorting out, that I misinterpret things that are said to me, or I miss a social clue, like someone stopping talking to me, when I’m having a discussion with them. One would think I’d catch the hint and be quiet/give them a chance to talk, but when I’m whacked from being off balance, it’s really easy for me to miss those kinds of clues.

o Interpersonal social issues – result from the problems I have above

+ Social withdrawal – How many times can I totally screw up social interactions and still stick with it? After a while, it seems like a total waste of time. Really.

+ Lack of communication and interpretation – When I shut down, because I’m having so much trouble balancing, I stop communicating and interpreting what others say to me. I just don’t have the energy or bandwidth.

+ Learning differences and disabilities – As a result of withdrawing and getting turned around so many times (and not just in adulthood, but when I was a kid as well), I’ve learned to learn in different ways. These differences, when not integrated into the world around me, can become disabilities. Not because of me being disabled, but because I’m just different, and others can’t always detect and allow for that.

+ Social development and integration issues – all of the above add up...

+ Social withdrawal – and I figure, “Why bother?” It’s much easier just being off by myself.

* Vicious cycle of continued neglect and compounded physical issues

o Crime and punishment – I’ve had more close calls with the cops because of communication issues than I can count on the fingers of both hands. I’ve also been routinely punished by teachers and other authority figures for “defying” their orders, when I simply didn’t understand. My parents had to step in and save me from some of my teachers, because the teachers weren’t being clear with me, and I couldn’t let them know that I didn’t understand. Now, I’m not mapping all my crime and punishment experiences to vestibular issues, but when you’re so taxed and fried from keeping your balance and you have no energy left for social interactions, it can be an issues.

o Employment/Social functionality issues – see above

+ Financial instability – When you’ve got communication and social interaction issues, and you’re so busy just trying to stay upright that you run out of steam, it’s easy to get into financial trouble. REAL easy.

o Compromised relationships – arising from communication and interaction issues, leading potentially to:

+ Abuse, Divorce, Instability, Unemployment, Isolation

+ Health neglect – fatigue cuts in on your ability to care for your health, including detecting when you need help

+ Worsening conditions – can go unnoticed, unaddressed, and communication issues can keep you from seeing a doctor because of the difficulties

+ Re-Injury – fatigue can stop you paying enough attention to the world around you… going faster, going faster… ending up in a jam again

o Trauma Response to Circumstances – what’s more, on top of all of this, you’ve got a physical trauma response (your hyper-alert sympathetic nervous system kicking into overdrive on an instant’s notice, whether or not it’s warranted), which makes things even more… interesting

+ “Normal” circumstances trigger trauma response – even if there’s no immediate danger, the perception of danger can set off your sympathetic nervous system, sending you into fight/flight

# Physical issues > emotional response – you can have an emotional response to physical issues… becoming emotionally overwrought when you’re off balance (this happens to me a fair amount – I tend to start to panic, when I feel myself getting off balance yet again)

# Social issues > trauma response – unsatisfactory social situations can trigger you… like that flood of dread that comes up when you contemplate going to a party, after the last time you went ended in some sort of humiliation or ridicule.

# Interpersonal issues > trauma response – bad interpersonal interactions can also produce a trauma response… like seeing a cop in your rear view mirror and physically re-experiencing the last really unpleasant encounter you had with a “statey”.

Vestibular issues may resolve on the surface, but the underlying experiences that accompanied them before remain, setting up an associational cascade of PTSD-like reactions to the conditions that resemble the original problem.

It’s a lot, I know. But this is all consistent with my own experience. I haven’t gone to the great extremes of incarceration and divorce and bankruptcy, but I’ve been damned close, and the fact that I’ve narrowly escaped so many times makes me believe in a Higher Power of some kind. In fact, the perception of others that all this couldn’t possibly come from something as simple and as “minor” as vestibular/balance issues, is testament to the very human tendency to play down things. And it speaks to why and how mild TBI is so often under-estimated in its ability to disrupt, even destroy, lives.

It’s not that I’m looking for sympathy or to have anyone cluck their tongues over how hard I have it — I think it’s just important to point out the ways in which TBI symptoms can cascade into one another, building up and building up until they turn into serious problems that aren’t easily dealt with.

The key for me is to head these things off at the pass and keep myself from getting too dizzy to begin with.

[x] Stay rested – check

[x] Avoid dairy like the plague – check

[x] When I AM dizzy, slow down and take my time – check

[x] When I AM dizzy, make sure I get extra rest – check

[x] When I AM dizzy, DON’T PANIC – check

Because I know what can happen, if I don’t take care of myself. It doesn’t always progress to the extremes described above.

But I know for damned sure, it could.

Finding balance

Source: Jason Dunn

I’ve been reading the DOD’s new Mild Traumatic Brain Injury Pocket Guide, and really appreciating it.

It talks about definitions of mTBI and common symptoms, and it talks about different approaches to take to treat them. What a breath of fresh air — which is probably not the sort of thing that often gets said about the U.S. Department of Defense.

Included in the topics are:

• Management of Concussion/Mild TBI
• Management of Headaches
• Management of Other Symptoms
• Management of Dizziness and Disequilibrium
• Management of Fatigue and Sleep Symptoms
• Management of Vision, Hearing and Olfactory Symptoms
• Management of Irritability
• Management of Appetite Changes and Nausea
• Cognitive Rehabilitation for Mild TBI Consensus Conference: Summary of Clinical Recommendations
• Driving Following TBI Conference: Summary of Clinical Recommendations

It’s really great to see these pieces of information collected in one place, in a pocket-size format (although on my computer, I look at it full-screen, so it’s not in pocket form for me right now).

I’m particularly interested in reading what they have to say about dizziness and disequilibrium, because that’s been such a big issue for me for so long. Being dizzy has wreaked havoc with my health and mental state more than I can say — I used to have such a hard time staying upright, I’d flip out over every little thing, and I couldn’t talk to anyone, first thing in the morning, while I was trying to get ready for work. I had to focus so intently on what was in front of me, and not falling over, that if anyone spoke to me while I was getting dressed or making my breakfast, I would lose it.

Seriously, I was a friggin’ bear to deal with, first thing in the morning. For years. I feel  sorry for all the folks who have had to deal with me, when my vertigo was at its worst.

Being dizzy and losing my balance didn’t help, back in 2004, when I was standing at the top of some stairs and my spouse called for me to come get something. I had no business standing at the top of those stairs in stocking feet, but I was… and in the space of a minute, I was lying at the bottom of those stairs in a foggy daze, not quite sure how I got there, but remembering quite clearly the BAM-BAM-BAM of my head on the steps as I went down.

Shit.

Anyway, enough dwelling on the past. I’m getting back to balance, I must remind myself.

It never actually occurred to me that it was abnormal to be so dizzy all the time, till I started talking to folks about my recurring intense vertigo a few years back. I had told one of my past doctors about being super-dizzy when it was particularly bad, some time back. They just put me on meclizine, which did absolutely nothing for me at all. It didn’t even take care of the nausea.

Looking at the Pocket Guide, I see that pharmacologic treatment has not been shown to be effective in chronic dizziness after mild TBI. A ha! There it is — a possible explanation for why meclizine works for friends of mine who have vertigo, but it does nothing other than make me even more numb and whacked than I already am.

Of course, at the time I was seeing that doctor (I have since moved on – they were a bit too pill-happy for my likes), I didn’t know about my mTBI issues, so I was just another medical mystery that they shrugged their shoulders over and sent away with some comment about how I’d just have to wait it out.

Interestingly, I’ve never been examined specifically for dizziness and disequilibrium. With me, it tends to come and go — it’s worse when I’m tired or I’m fighting off a cold or I eat something with dairy ingredients in it. And of course, I’m often just peachy keen in the dizziness department when I go see my doctor.

So, I’m kind of on my own in this. But reading further, it looks like I’ve been doing the right things for this. They recommend:

• Perform neck stretches — I do this, especially in the shower in the morning, when I can get really hot water on my neck and shoulders. That makes stretching easier. I also stretch before going to bed, which helps me relax and get to sleep.

• Modify activity and change positions slowly — I’ve had to do this by default. I learned the hard way a bunch of times… moving too quickly and changing positions quickly when I’m dizzy is a recipe for extensive bruising, not to mention panic.  Both are less than optimal.

• Change sleep position — I started sleeping on my back a lot more,  a few years back, and it seems to help. But there’s nothing like just rolling over and going to sleep.
• Perform vestibular rehabilitation exercises — I do my morning workouts, and I’ve been adding more balance work to the mix. I have been doing this crazy-hard move (sometimes holding onto something while I do it) — I stand on one foot, and raise the other leg up, with my knee bent. Then I bend over and touch my left hand to my right toe, and vice versa with my right hand and my left toe. Not only does it really work my legs, but it’s also incredibly difficult for me to do. I’ve gotten to the point where I can do it without hanging onto something, but it’s still hard. I may be fooling myself, but I seem to be able to tell a difference in my balance, since I started doing this.

I’d like to add to this:

• Keep yourself from getting sick and congested (my ears really do a number on my balance, when I’m congested)
• Avoid dairy (or other foods you may be alergic to). When I cut out dairy, it cut my balance issues by 2/3. No kidding.

I still have issues, now and then, but they’re not constant, so I notice them immediately and I do modify my behavior. I avoid standing at the tops of stairs for too long. I also pay extra attention when I’m going down stairs or doing other balancing type activities. I also don’t go running around out-of-doors, climbing on rocks and jetties like I used to. (What a loss that is — I used to love to climb and jump and hop from rock to rock, but my better sense has prevailed in that — somehow, not getting hurt again is worth the cost.)

Yeah, taking steps to avoid problems has become a more regular part of my life over the past couple of years. Maybe I have a better appreciation of the risks I run. That’s certainly true. And I’ve also gotten in the habit of doing things that will help prevent future injuries, not just avoid them. Like working out. And working on my strength and flexibility.

Balance for me seems to be as much about muscle strength, coordination, and mindfulness as what’s going on in my wiring/inner ear. The stronger I get, thanks to my workouts, the more balanced I feel. I’ve notice myself becoming more coordinated than I was before. I’m sure it’s a combination of things, not just my brain/wiring. But I have been noticing an improvement.

Of course, there’s always the occasional flare-up — sometimes out of nowhere, for no reason that I can tell. But as long as I keep an eye out and I pay attention, I have a chance of staying upright — and doing things that will keep me that way… or at the very least, keep me from falling over.