Managing TBI symptoms all around

Lots to work with

So, I’m headed back out on a business trip again next week, which means it’s probably going to be pretty quiet here for the next 10 days or so. I may get a chance to check in while I’m traveling, but I’m guessing things are going to be busy, so I might not get to check in.

One thing that’s been happening, which I’ve talked about before, is that I’ve been discussing my testing results with my neuropsych, comparing how I am now to how I was before. Back in 2008, when I had my first test, I was in pretty rough shape. I was struggling with a pretty constant sense of overwhelm, I had a pervasive sense that there was something terribly wrong with me, and my mental health was all over the map. I was borderline disabled… and headed in that direction, due — I’m sure — at least partly to the fact that almost all of my friends and associates were living disability-centric lives. By that I mean, they either considered themselves too broken to do much with their lives, or they devoted their lives to comforting and counseling the broken.

But in either case, their focus was on disability, wounding, victimization, and struggle. And in most cases, their perceptions of themselves and others was very similar — they not only helped wounded, damaged people, but to at least some extent, they also considered themselves wounded and damaged.

Sigh…

Anyway, the one exception to that has been my neuropsych, who has never let me get away with settling into a victim mindset, and who has really reminded me on a regular basis of what I really think about life — that it throws us some pretty intense curve-balls sometimes, and sometimes it really roughs us up, but in the end we do have the means and the ability to turn things around for ourselves and no matter how bad things may seem on the surface, we have the capacity to move on and do better.

And that’s been my experience. Truly, it has. They have helped me and offered me encouragement and information all along the way. Granted, I’ve only seen them for an hour a week — and sometimes not even that often. But they really have been a help. Because they’ve been the one person in my life who has not been sucked into the abysmal void of mistaken beliefs telling you that you have to settle for less, which I see all around me, each and every day.

I have been getting better. A lot better. My numbers are remarkably improved over last time. And we haven’t even gotten to the purely cognitive stuff yet.

What has been getting notably better is my overall functionality and my self-perception. The old depressiveness and the overwhelm is down — way down. Anxiety levels, impulsive acting on anger, social discomfort and avoidance, negative emotions, and my general sense of maladjustment are all significantly reduced — often to normal levels.  It’s literally like a light has turned on in my life. It’s like I am a completely different person on paper, and my life has gotten one of those major renovation makeovers you see on HGTV.

And yet, what all has changed? Seriously — what has actually changed in my life?

I don’t have the blindingly intense, constant headaches I once did, and the seizure-like behavior has subsided. I don’t go into anxiety/panic attacks the way I used to, and the anger and sense of confusion has subsided. But other than that, a lot of things have objectively stayed the same. I still have chronic physical issues — the pain, light-sensitivity, noise-sensitivity, balance issues, vertigo, headaches, insomnia, sleep issues, and I still find myself flying off the handle over things that “shouldn’t” get to me. I still get confused over things, I still lose track of where I am and what I’m doing, and I still actually have a lot of the 84 concussion/TBI issues that can make your life really interesting.

So, what’s changed? Basically, a few things have made a world of difference.

First, I am aware of the issues. I know I have these issues, I know that when I am not sleeping well, it affects my thinking and my sensory sensitivities, which makes life more of a pain in my ass. It’s not all this big mystery for me anymore — I’ve spent a lot of time observing my life and seeing what sets me off and what works, and after several years of serious study, I have a pretty good working understanding of what impacts me, and how.

Second, I have stopped fighting the issues. Sh*t happens. That’s just a fact. Especially with TBI. Instead of battling against the things that just are and fighting their existence, I use my energy for simply noticing that – yes, again – the sh*t has happened, and I need to respond to it, instead of wringing my hands and crying poor-me and cursing life for dealing me a crappy hand.

Third, I actively manage the issues. From my observations, I can clearly see that one thing leads to another, and I can tell when I need more sleep, or I need to wear my sunglasses when I go out. I generally know when I’m in rough shape (which is more often than I’d like, but oh well…), and I can then anticipate things going a certain way. For example, when I am very tired, I get clumsy. When I’m clumsy, I drop things. When I drop things, they often make loud noises, which startle me and set me off. So, when those things happen on days when I am tired, rather than getting completely bent over them, I just deal and move on. I take a deep breath, pick up the fork I’ve dropped and get a clean one from the drawer, and I eat my food. If I’m dizzy, I hold onto the side of the counter when I’m leaning over, so I don’t fall. And if I’m sick on my stomach because of fatigue and dizziness, I just move more slowly and eat my food at a more leisurely pace. And I get on with my day.

It might not sound like much — it might even sound very common-sense to a lot of folks — but for me, this is huge. It means the difference between

• starting out in a really shitty frame of mind, thinking I’m damaged and wrecked and whatnot, and not feeling up to much of anything… which often becomes a self-fulfilling prophecy… and
• starting out on a note that shows me that I can manage my situation just fine. It’s not ideal, but I can manage. And that certainly helps.

You know, it’s funny — while we were going over my test results, my neuropsych was saying how my physical problems had been really reduced almost to non-existence. Au contraire. Sure, they don’t ruin my life like before, but they are still very much there. They’ve been there for as long as I can remember. I’m just doing a hell of a lot better job of managing them, of dealing with them, of working them into my daily life, than ever before.

Again, being aware of them and realizing how they fit into the overall constellation of my life, how they shade my existence and contribute to things like anxiety and overwhelm and difficulties with thinking and processing information on the spot, has made a huge change. It’s not that I have this identity as a disabled person who cannot do anything much with their life. I have an identity as a human being who can do a lot with what they have, despite the issues that come up on a regular basis. I manage my TBI issues all around, and while it’s not my favorite way to live at times, it still gives my life a unique and very hopeful feel.

It pretty much sucks that I have these issues, and that they show no signs of going away permanently. But at the same time, I usually know how to handle them, so even though they’re there, they don’t have to ruin — and run — my life. They’re just there. Background noise. Oh, well. If nothing else, they are an opportunity to learn.

So, the bottom line is that things aren’t perfect. When are they ever? But I can manage. I do manage. Personally, if something has to be wrong (and part of me think there’s always gotta be something), I’d rather have it be this, than something more terrible that is insurmountably soul-sucking. There are plenty of folks who struggle in pain they cannot identify or address, and I’m not one of them. Not anymore. I struggle, sure, but after years or work, now I can identify the real source of the pain, and I can sure as hell do something about it.

So yeah — onward.

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….

TBI Heroes – ‘Cause that’s how everyone wants it

Junior went too soon. Buddy, you are missed.

As I sit here in bed, surrounded by my flu meds and fluids, I have plenty of time to think about things I normally don’t, in the course of my busy everyday life. The (not unexpected) news that Junior Seau had CTE at the time he shot himself in the chest, last May, has been on my mind. A lot.

And as I’ve been weighing the pros and cons of going back to work in time to work a professional conference (we’re talking about 5 solid days of being on my feet, running and working and also doing a presentation for a colleague who can’t make it), I have to wonder what in hell’s name makes me think I should even consider doing this?!

Seriously, it would be madness for me to dive right into that. See, the whole conference thing also includes air travel. In an enclosed aircraft. During one of the worst flu outbreaks in something like 10 years. And it includes being surrounded by thousands of people from all over the country, some of whom may be sick, themselves. And it includes going-going-going for 12-14 hours a day, for 5 days straight. I’ve worked this event twice before, and even when I was hale and hearty and feeling fine, I was completely wiped out by the end. If I push it, this time, then what? I end up back in the hospital?

For what?

Am I insane?

Actually, no. I’m just in the habit of pushing myself. Because unless I push, nothing gets done. See, this is what most people don’t get about me and my situation. I cover things up really well. I mean really well.

Who would ever guess that on any given day I could wake up being so wobbly and off-balance, that if I don’t maintain some contact with an upright surface, such as a wall or a piece of furniture, I’m going to fall over? I’ve learned to mask that extremely well, being ultra nonchalant as I stroll along at a “leisurely” pace. I’ve learned, over the years, how to keep myself upright by keeping a very straight posture – which is probably why some people assume I have a military background – I don’t, they just seem to assume that if I stand up straight I must have been trained. Actually, I have been trained – by life. Because I’ve learned the consequences of not keeping my posture aligned, and it’s no damn’ fun.

And who would ever guess that the “cool shades” I wear are not at all for style’s sake, but to keep myself from losing it over the bright lights all around me? I wear sunglasses in the winter as well as the summer, because the snow is even more glaring on me than summer sunlight. Some days, when I am really tired, any variation in light – a sudden flash or a bright piercing sunbeam – can set off klaxon alarms in my head.

Noise, too — there’s nothing like having the voices of your loved ones turned into spikes driven into your brain, because you’ve reached just the right level of fatigue and sensory overload. Not being able to listen to the songs sung by one of your sibling’s kids, when they just put something on YouTube and they want to sing it for you in person… that’s a pretty lousy way to spend a Christmas afternoon.  Of course, you can’t let on that you’re baked, you can’t tolerate any more noise, and if anyone says one more thing to you, your head is going to implode. You just suck it up and move on. You think of other things. You put on a happy face. You keep going and keep smiling.

Because that’s what everyone needs.

They don’t need to know the gory details of how you haven’t been able to sleep a full night for months, now…. and how everything that touches your skin feels like it’s burning through to the bone… and how the ringing in your ears is drowning out everything, which is why you have to keep asking people to repeat themselves… and how you haven’t actually understood much of what anyone has said to you for the past two hours, and most of the stuff you did understand, you’ve since forgotten. People don’t want to know about that. They don’t want to know about the increasingly frequent memory lapses, the flawed judgment calls, the time management issues, the distractability. They don’t want to hear about how bone-tired you are, how confused you are, how frustrated you are with every damn thing that comes across your path.

They don’t want to know you’ve been simmering at a near-boil for days on end, now, blowing up at the people closest to you, because you’re so fried by all the sensory overload and the fatigue and the defeat of never being able to out-run or out-maneuver these things. They don’t want to know that as much as you might get a bit of relief, now and then, the issues will still be back later, and you can count on that. They don’t want to know about the jumpiness, the hair trigger temper, the flashes of rage that tear through your insides like fire across a dry prairie. They don’t want to know about how you’ve used just about every “tool in your toolbox” to keep it together, but things are raveling just a little bit thin, these days.

Nope. They don’t want to hear about that — any of it. Especially if they know you as a can-do type of person who always manages to figure things out. If you’re the go-to person in their life, they depend on you NOT being any of the things you actually feel like, day in and day out. And God forbid you should ever speak up and ask for some help.

Because when you do that, they either laugh at you, or they get freaked out, because nobody — but nobody — can seem to hear anything about TBI or concussion or any other sort of brain issue, without thinking about themself and questioning themself and confronting the bare-ass fact that deep down inside, the heroes are still human.

I’ve been a hero for a long, long time. At work, I’ve often had a sort of “folk hero” reputation for having accomplished the things I did. Because I never gave up. Because I looked the beast in the eye and still moved forward. Because I took on projects that others ran from, and I made it all work in the end. I’ve been a champion for as long as I can remember, and I’ve been rewarded for it, too.

So, when I fell in 2004, and that all started to unravel, the hammer came down pretty hard. I was failing. I was coming up short. I was not living up to expectations. And that was unacceptable. People talk about how you shouldn’t be afraid to fail, how you shouldn’t be afraid to come up short sometimes. Those people write books for a living, clearly, and they obviously don’t have their level of compensation and their family’s welfare on the line, every time they are tested. Those people piss me off. Because the ones who write our paychecks (and often have us by the short-n-curlies) attach a price to our performance.

Not only that, but the whole world around us attaches a price to our performance. And this is the thing that makes me absolutely nuts about the people who go on and on about how “formative” failure can be. Yeah, homelessness is formative, too. As is long-term unemployment. The price of failure in today’s world is NOT just popularity — is is your very way of life. It can even be your life. Period.

And how much moreso for someone like Junior Seau? Someone on whose shoulders so much rested — the restaurant, the foundation, the reputation…. Someone who had flown so high, and was never going to fly that high again, as far as he could tell. To grapple with the things I’ve got going on, in my low-profile life as just-about-nobody, is hard enough. But to do it in the glare of the public eye? How the hell do you do that?

Maybe, you just don’t.

And in all the talk about Junior Seau’s death and CTE and changes that need to be made to football, the thing that’s been missing for me — the big, big thing that seems like it might actually make a substantive difference in all this — is how people with brain injuries are treated… How anybody who doesn’t “measure up” is treated by once-adoring fans.  Once you set the bar high, it’s your job to keep out-doing yourself and keep it moving ever upwards, ever onwards. But that’s a fantasy and a myth born of Hollywood and personal improvement gurus. And it puts the onus of keeping your shit together on the person who might actually need the most help.

If the truth be told, we live in an exacting and unforgiving society. I have no idea how we got to this place, where everyone seems to need to believe they are invincible — or could be. And I have no idea how we have created a culture where it is perfectly okay to punish those who don’t live up to our expectations, as though they were homicidal criminals. Life is full of disappointments. And yet we carry on as though we should never, ever be disappointed, and we should always get exactly what we want, because we “deserve” it.

What exactly do we “deserve” anyway? That others meet our fantastical expectations in every way, until the end of time? Who says anyone owes us that? Who says we are entitled? The thing of it is, most of us structure our lives around the roles we play and the ways we fit into each others’ lives, within those roles. So, when our abilities change and we need to adjust our roles, it can be terribly frightening for others to deal with us. Because a change to us is a change to them. And if they’re not ready to shoulder more of the “load” of making sense of life with their own resources (rather than ours), then the loss of our presence in their lives in that certain role, can be terribly frightening, disorienting, almost incapacitating.

How very human of us.

I guess in the end, there are no easy answers, and it’s simple enough to get upset and pissed off over sad things that should never have happened, but did.

When all is said and done, the fact of the matter is, some of us are hero material. For one reason or another, we have learned how to push ourselves through thick and thin… and come out victorious on the other side. Some of us know how to put aside our own personal safety and well-being for the sake of others. And some of us are in the habit of doing that on a regular basis. Now, I’m no firefighter or first responder or doctor without borders, but I am in the habit of putting the needs of the many over my own individual wishes and needs. And it’s served others well over the years.

Now, with this flu still raging, I’m doing a reality check and seeing quite clearly that this is no time to be a hero. If can’t do the job at the conference next week, someone else is going to have to take my place. There may be others working the event who are also sick and choose to work it, anyway, but this one I’m going to have to sit out. I hate the idea and it goes against everything in me, but I’ve just got to do it, this time.

It’s not what I want. And it’s not what the folks I’m working with want. But it’s what’s got to be done. This one time, I don’t have to be a hero.

When things don’t go as planned

Sometimes there’s high seas ahead – oil painting by Joyce Ortner – click to see her gallery

I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.

I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.

Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.

Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.

The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.

I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.

Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am not exposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.

Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.

So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.

That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.

Anyway, that’s one example of things not working out as planned, and it being okay.

Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.

Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.

So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.

I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.

So, it’s back to using the tools I was working with  before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it.  I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.

So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.

Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.

Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.

Now, to go for my morning walk in the woods.

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.

Tired and dizzy and running late

Well, this is great… not. Our big deadline is today – what we’ve been working towards for many months, now. I was awake early, thinking that I could get to the office early. I will get there a few hours before I usually do, but after getting some exercise and eating my breakfast, I find that the clock has moved more quickly than I thought it was. I’m running a little late.

Part of the issue is that I’m pretty dizzy. So, I’ve had to be more careful and cautious about how I move, this morning. I can’t rush around, I have to pay attention to where I put each foot, how I move each part of my body. And that takes  more time than usual. I have to be very deliberate, very mindful, as I move around. And as I slowly navigated my way down the stairs and into the kitchen this morning, I thought about the times years ago when I could just move… without thinking about it and coordinating every move.

Oh, well.

Did I have sugar yesterday? Dairy? This feels like dairy vertigo — when I have dairy, I get mucus-y and my ears fill up, and I become very dizzy. I don’t think I had any milk or milk products. I must just be tired. Very tired, in fact. Yep, that’s it. I could use about 8 hours of uninterrupted sleep, right now. Not gonna happen till much later today, but a person can dream…

I’ve been pushing hard for weeks, and I’m feeling it for sure. I worked most of the day at home, yesterday, starting around 4:30 a.m. getting things together and all organized. I worked till about 2, then lay down and rested for an hour, then got back up and took care of errands. It’s nuts, and I probably should have gotten more sleep than that hour nap in the afternoon, but again, this is the big deadline. The end of this project. And a bunch of us were online, sorting out last-minute things all day. I was not the only one.

These last minute things have been completely and totally needless, in my estimation. If I think too much about it, I rapidly become irate… even livid… that certain folks on the project dicked around while a number of us were voicing concerns about not having enough time to get everything done in a systematic fashion. But no, certain individuals were busy jacking around, fiddling with this and that and the other thing, rather than staying on point and being focused on what was important.

Like I said, if I think about it too much, it makes me nuts. So, I’m using my noggin and not wasting time getting all tweaked over stupid sh*t I can’t change at this point. We have time to change later. After the obnoxious SOBs who carried on like they knew what the hell they were doing, have paid the dear price and have let these lesson sink in.

That’s assuming, of course, that the lessons will sink in. From what I’ve seen, that might never happen.

Oh, what-ever. I can’t let this experience define me. I can’t let it shade my perception of myself and let it get me down. There are things I did wrong, that have contributed to the last-minute mess. Things I did wrong many months ago, and didn’t fix. Part of this is my own damned fault. And I accept that. I’ll take full responsibility for that. But my name isn’t Patsy, and I’m not taking the fall for this. Not gonna happen.

But all this internal haggling isn’t going to get me anywhere. I’ve got to keep my head above water and keep my spirit and soul intact. I’ve got to focus on the positives and carry myself in the best way possible. People are people, and I’ve been in this business long enough to know that this sort of crap happens all the time. There’s always something. And in response to what’s gone down, I have a multi-point plan that we can follow as a team and as a division, that will not only help prevent these sorts of things from happening, but also make us even better in the long run.

I read recently that sometimes people learn best from hard lessons. Trial and Error Learning (TEL) can work better for some than Errorless Learning (EL). My neuropsych tells me that for some people, EL is the only way they can really learn, and TEL is a recipe for disaster.

We’ll find out today — and in the coming weeks and months — how that’s going to shake out.

For now, I just need to get a move on. The day is waiting.

keep bumping into things with my head concussion

Keeping balance can be a real struggle at times

Somebody found their way to this site with this search string the other day. Needless to say, they’re not alone. Balance is a big issue for me. It’s been this way for a long time, to the point where I sometimes hardly notice it anymore. It’s just always there, to some extent or another.

The times when I do notice it are when I’m really tired or I have an ear infection, and it’s worse than usual. When I’m really tired, I tend to not only get off balance, but also get distracted when I’m moving around. So, I don’t see the things right in front of me, and even when I do notice them, I sometimes have a hard time adjusting my balance to go around them. There’s not much I can do about the balance problems when they’re happening, but I’ve noticed that if I get more rest, my issues ease up after a few days. It’s never an easy fix — I need to pay attention to when and under what conditions I’m having issues, and then take appropriate steps.

For example, if I’m having trouble with balance alone, I probably just need to get more sleep. But if I’m having trouble with balance and light-headedness/vertigo, then I may have a slight ear infection. Either I’ve gotten water in my ear while swimming, or I’ve been eating too much sugar and junk food, which really throws me off. (Note to self – I have been eating too much sugar junk food, lately, to keep myself going, and I’ve gained about 10 lbs that make me feel sluggish and lard-like. I’m not worried about my looks, just how I feel, and I don’t feel that great.)

But no matter what I do, the balance issues always seem to come back — or at least, never leave completely. They’re a part of my life, like headaches and pain tend to be. I just take them all in stride, when I’m feeling good and strong. When I’m feeling down, it does bother me, and I tend to go into a funk (which causes me to eat more junk food). But for the most part, if I can stay rested and involved in my life and focused on the future, I can handle it.

One way things have gotten better is how I respond to my issues. I now recognize them for what they are. Time was, I was so caught up in just keeping going, I never stopped to take a look at what was driving me. Anxiety and agitation and constant restlessness had a hold of me, and I didn’t fully understand how or why. And my reactions to losing my balance or being light-headed were pretty intense at times. I used to flip out over feeling dizzy, when someone was trying to talk to me. I would get disoriented and anxious and I would snap at them. Sometimes, it was all but impossible for anyone to talk to me, it was that bad.

But since I’ve come to realize what the source of my issues is — that lightheadedness, that vertigo, that sense of losing my balance, that loss of balance — I can better manage my reactions to it, and I don’t have to snap and have a full-blown temper tantrum at the people around me who are just trying to talk to me.

I take a deep breath and count to five before I say or do anything. And that helps. It helps a lot.

Another thing that’s helping me is doing physical balance exercises in the morning. While I’m waiting for my coffee water to boil, I do leg lefts, and when I can, I don’t hold onto anything while I do them. When I first started doing the leg lifts, I couldn’t manage without holding onto something. But now — about a year later — I can tell I’m physically stronger and more balanced. I am able to stand in the middle of my kitchen and do those same leg lifts without any external help. When I’m healthy, that is. When I’m tired and/or have an infection, I need to hold one. I don’t beat myself up — I just notice what is going on with me, and I hold onto something. And I make necessary changes to my diet and daily routine, so I can catch up with myself.

More and more, those changes are involving added rest. For many, many years, I was driven by an almost overwhelming drive to DO.  To achieve. To experience. To make things happen. I was always on the go, and nothing could hold me back. Unfortunately, I spent a ton of time wasting energy and effort because I was so busy running from one thing to the next. I couldn’t seem to make much progress. D’oh – I wasn’t consistent with my activities, and I often gave up just before I was about to succeed.

Looking back now, I can see how so much of that was driven by anxiety and agitation — which were not only fueled by my balance issues, but they also fueled the balance issues. It was a self-perpetuating cycle that kept me going, and making no progress. I was so busy fighting those invisible demons that were creations of my own behavior and habits, that I never gave myself a chance to get ahead. Now, I’ve addressed the old behavior and habits, so there’s less fuel for that driven-ness. And I can relax. And I can rest.

Amazing. Relaxation and rest actually feel good.  Who woulda thunk it? Most of my life, I treated rest and relaxation as necessary evils that kept me from doing the things I wanted to do. Now, they’re activities I enjoy in their own right — just last night, I had trouble getting back to sleep after waking up at 3 a.m., but when I lay down and just let myself relax enjoy the sensation, I drifted right off to sleep. The funny thing was, I wasn’t even focused on going to sleep, rather on enjoying the feeling of relaxing and resting. I was caught up in the experience itself, and the result followed.

That approach seems to work well for keeping my balance, too — both physical and mental. When I focus on the process of moving from Point A to Point B, I can keep my balance much better.  It’s when I am focused on reaching the goal in the fastest way possible, that I find myself in trouble. Falling over. Bumping into things. Getting turned around and flustered. Granted, it takes longer to get from Point A to Point B, but I enjoy myself more. And in the end, I want that. Even more than I want the achievement of Point B.

To those who are suddenly bumping into things after their head concussion, take it easy. Rest and relax. And pay attention to what you’re doing, while you’re doing it. The ride can take longer, but you may find you enjoy it all the more.

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.

Why complain?

I’ve been thinking a lot about my work with my neuropsych, lately. My work has gotten past the basic survival stuff, where I’m just getting my head around what is going on with me. I’ve gotten to the point where I’m looking beyond my immediate issues and focusing on the big picture, to where I can make a difference in my own life — and possibly the lives of others.

I’ve always had a deep need to make difference beyond my own individual life, and so often my issues have gotten in my way.  Susceptibility to distraction and short-term interference… the anxiety that would come up and completely turn me around. And of course the anxiety is fed by the cumulative effects of that “TBI Cascade”:

It doesn’t always happen like this, but the fact that it has happened in the past, makes me susceptible to anxiety about it happening again.

I think that’s the biggest thing hanging over my head – it happened before. Is it going to happen again? The fatigue, the confusion, the agitation, the busy-ness, the frustration, the pain, the distractability, the failure to understand, the failure to be understood. Anxiety over all this actually makes things worse, and it can be a real killer.

One of the ways that my neuropsych has helped me immensely is by helping me think through how to handle these things. The main thing they’ve accomplished is convincing me that I can handle these things. That I do have the resources and the capability to deal effectively with these problems. Before (as in, just about all my life), I would let them get the better of me, and I would get so turned around and upset by what happened — and the prospect of it happening again — that I would be completely thrown off track. Not good. Not good at all.

It didn’t help matters at all that people around me all treated me like the things that I had done and said in the past defined me in the present and also determined my future. What a load of crap. I see that now, but when I was 10 years old, being browbeaten by my father for being “stupid” and screwing up all over again, I couldn’t see that. The adults in my life couldn’t see it, and I certainly couldn’t, at that age. I mean, part of me knew they were all wrong about me, and I wasn’t stupid and retarded and mentally ill, the way they said I was. And I constructed a private world inside me (not unlike Marwencol) where I could be safe and act out in my own mind the kinds of scenarios where I was safe and secure and could be fully functional.

I had a very lively imaginary life, when I was younger. It was the one place where I could be safe and normal, and nobody gave a crap about the things I messed up. Nobody ever gave up on me in my imaginary place, they always gave me the benefit of the doubt, and I was always treated with respect and high regard by the imaginary personalities I invented  and interacted with behind closed doors.

Even up till the time when I started my neuropsych rehab, I was engaged with this imaginary world. I would have some great conversations with people in the car, driving to and from work. Some people talk to themselves. And I guess I was, except that my conversations were always directed towards another person who I imagined was there. That person would always be attentive and respectful and treat me like an intelligent individual. I didn’t have to constantly prove myself to them. Maybe I was talking to my “better angels”. But at least I was interacting. Some people don’t even bother to pretend. They just shut themselves off and don’t even try. Or they find solace in playing roles in the outside world that someone else invents for them. They aren’t really there and the roles aren’t really them, but they find solace in them, and they are able to function in the world as a result.

It’s like I was role-playing for life.

But anyway, back to complaining… I have to say, after working with a neuropsych for the past three years, I have found my physical issues to be much more manageable. Fatigue can be managed by just being realistic and mindful about my energy levels. And the pain has been greatly alleviated by reducing stressors in my life (not to mention exercising more and seeing a network chiropractor regularly for several years). So many of my really BIG physical issues — tinnitus, pain, balance problems, sensory sensitivities — arise from fatigue… when I manage my fatigue with common sense and responsible choices, many of them let up. And so many of my cognitive issues arise from the physical issues that arise from fatigue, so having a way of dealing with the fatigue and sleep problems and energy levels, that I get to solve a bunch of different problems by handling that core issue.

So, where does complaining come in? Well, basically, it comes into play when I am feeling hugely sorry for myself, and I am thinking that I can’t do anything about what’s going on with me. I tend to complain when I am over-tired and in this mindset that I am “stuck” with whatever bad situation is in front of me. Instead of doing something about it, I belly-ache and whine and moan about this, that, and the other thing.  And nothing gets done. Nothing changes.

Which is completely contrary to the truth of what is possible. The truth of the matter is that I do have the ability to change things. I can make different choices in my life that lead to different outcomes. I needn’t stay stuck in how things are, when they don’t serve me and my goals. Of course, in order to see that things don’t serve me, I need to know what goals I have, what I intend to accomplish, and how to bring that into being.

It’s all management issues. And when I get overwhelmed and tired and forget what I’m about, it can be all too easy to fall back into complaining-mode.

But why complain? Really? I have more power than I realize, to effect the kinds of changes I want to see in my life. We all do. The problem is when I/we get too fuzzy and foggy and overwhelmed with minutiae to develop a clear idea of what those changes can/should be.

That’s where long weekends like this come into play — an extra day to rest and rethink my life. I do a lot of rethinking on a regular basis. I have to back out of the busy-ness of the day-to-day and remind myself of what I want to do with my life, as a whole. It’s not just about what I want to accomplish at work, not just what chores I need to get done, what tasks I want to check off my to-do list. It’s about something much larger and more important, more lasting, more enduring, and ultimately more impactful, than just taking care of stuff that needs to be done.

Why complain, when I can create something far better?

Why indeed?