concussion now i’m stupid

Someone visited this blog yesterday with the search “concussion now i’m stupid” and it seems like it’s in the air.

I had a great day Saturday — I had a very social day, and I was out and about in town, which rarely happens with me. I either don’t have the time, or I don’t make the time, or I find a hundred other things to do that are more interesting than interacting with other people in a city.

But Saturday, I took a bunch of chances, and I had a ton of interactions that were really positive and encouraging.

Sunday, on the other hand, was a huge challenge. I wasn’t able to rest as much as I had wanted/planned, and I was really feeling the effects of all the exertion on Saturday. Even if the exertion was good and positive, it was still exertion, and I didn’t remember to rest.

One of my big problems is, when I get over-tired, I often forget to self-monitor. That happened to my yesterday. So, I ran into trouble.

With a Capital T. Had a huge meltdown yesterday. As in — rage and tears and being stuck in a loop of anger and shame and frustration and resentment. I hate when that happens. I could feel it coming on, and I thought I could stop it, but I couldn’t. It was like a repeat tsunami of unwanted overwrought emotion. Waters pulling out, then washing in and wrecking everything in its path. Emotion pulling out, then rushing back in and leveling everything in its way.  It came and went for about three hours, and it totally screwed me up — and my spouse. Not pretty at all. And I’m still “hungover” from it this morning.

Ugh.

Looking back on things with a less emotional eye, one of the things that complicated my situation yesterday was that insidious little voice in the back of my head that managed to find everything I’d done “wrong” on Saturday, amplified it about a thousand times, and then commenced to tell me You’re So Brain-Damaged and Stupid. Who would ever love or care about you? You’re such an idiot – you had a concussion — no, wait, you had a bunch of concussions – and now you’re stupid. You’re so stupid you don’t even know how stupid you are.

Stupid.

Well, you get the idea. And sure enough, as always happens when that voice gets going, before long, I was at war with the world, at war with myself, at war with my spouse, at war with my job, at war with everything and everyone who came anywhere near me.

concussion now i’m stupid…

My thinking is too slow, I’m not sharp and quick like I used to be, I’m not even funny anymore (and I used to be a laugh and a half all the time), and who would want to bother with me?

Geez.

It’s bad enough that I have to contend with the physical and logistical issues, but when that voice gets going… well, the only thing to do is go to bed.

I managed to do that eventually, but not on my own steam. I had to be guided to bed and put away like a cholicky baby. I friggin’ hate when I’m reduced to that. But when I’m in the midst of that storm/tsunami, I cannot for the life of me pull myself out.

For future reference, I need to keep the image of the tsunami in my mind, when I feel it coming up. So I can get to higher ground. Tell my spouse I need to take a break, and remove myself to my bedroom or study, to simmer down. Just get myself out of the way of the wave. Maybe go out for a walk in the woods. I did that yesterday at the end of the day,  and it helped tremendously. Yes, the walk in the woods — climbing up to the top of the nearest big hill — helps me a whole lot.

I also have to have a talk with my spouse about this TBI business – it’s not okay for them to talk to me like I’m an idiot, which is what they’ve been doing more and more over the past year. Apparently, they seem to think that because my memory is a bit spotty at times, and my processing speed has slowed, I’ve lost my innate intelligence. Either that, or they have always acted this way, and I’ve just recently stopped allowing myself to be intimidated into hiding my issues from them. That’s always a possibility.

So, there are three main issues I am contending with — the wave of emotion that cannot and will not be stopped and can only be avoided until it calms down… the voice in my head that tells me I’m stupid… and the voice I live with that tells me I’m impaired. The first one, I just have to be mindful of and learn to avoid being swept away. The second one, I have to either ignore or actively argue with. The third I have to have a serious talk with — and possibly involve my neuropsych to explain to my spouse that my relative weaknesses are manageable and don’t mean I’m reduced to a simpleminded shadow of my old self. Some days it feels like that — like yesterday — but it’s not the truth of the matter.

But ultimately, the bottom line is, here’s the #1 Lesson I (re)learned over the weekend:

I have to pace myself. If I have a big day, even if it is a really good big day, I need to take the next day OFF and SLEEP. Rest. For real. Nothing else matters. No distracting entertainment is worth the price I’ll pay for exhaustion.

The secret havoc of brain injury

Even among the properly trained, it can be difficult to understand exactly what is going on inside an injured head. At every turn, if you present well, outside your head it is assumed that you are well, that all is well, and that all will be well.

But inside your head, there are no such guarantees.

Inside your head, nestled amongst the tens of thousands of memories of what was supposed to go one way, but went another — with or without warning — lie slumbering catastrophes, just waiting to be awoken by sudden laughter or applause…

All the screw-ups, all the mess-ups, all the misspoken words, the misunderstood directions, the confusions, the communication breakdowns, the confabulations, the failed connections… no matter how small they were, the simple fact remains that things did not go the way they should have. No matter how hard we tried, things did not work out. And there were consequences — we tried like crazy to avoid them, but it just didn’t work out. We may not remember the specific details of each minor catastrophe, but the residue of each and every one is very much a part of who and what we are. Our brains may not remember each detail, but our bodies recall very clearly the experience of being wrong or mistaken or confused all too well.

Inside your head, sandwiched between the best-laid plans and the rock-solid goals and the shining hopes and the lifegiving dreams, the condensation of nagging doubts builds up. There is no true certainty with brain injury. There may be a sense of certainty, but the reality all too often is something very different. They trickle in, these well-versed, well-founded doubts — liquid sabotage — from the pressure cracks in your system, the pressure cracks in your life, seeping in through the fissures to accumulate in the crevices in the foundation you’ve built your life upon. When the weather is warm and pleasant, all is well. But when it gets cold — a sudden snap, perhaps — the liquid expands like icy water freezing in sidewalk cracks, and it separates the pieces of your foundation like so many pieces of stone or brick or cement forced apart by sudden ice.

Outside your head, everything looks fine. Everything looks good. Until you snap. The pressure builds up too much — too little sleep, too many demands, too much long-term fatigue, too much cognitive deficit, too many questions, too much to do, too few resources left over at the end of the day to manage it all. Too much… too. And you lose it. Go off the deep end. Pitch a fit. Fly off the handle. Over what? Sometimes it’s hard to remember.

And then it hits the fan. You’re not the only one in the line of your own fire. And the others who bear the brunt may or may not be accommodating. Chances are, they’re not. And a brick pops out of the wall. A chunk of your foundation cracks off. The mortar between the stones in your carefully constructed retaining wall starts to crack and crumble.

Again.

Maybe the people you lost it around remember other times you’ve done this. Maybe they don’t. If they do remember, chances are they’ve tried to forget, tried to give you the benefit of the doubt, tried to make allowances or exceptions. Tried to give you another chance. But they keep giving you second chances, and still… it comes back to this.

Maybe the people around you don’t remember you losing it before. In which case, depending how long they’ve known you, you’re either the benefactor of their interpersonal largesse and allowed another chance or special exceptions… or you’re marked as someone who isn’t quite right and can’t quite be trusted.

Or maybe the problem isn’t anger at all. It’s not temper. It’s not tantrums. It’s not violent outbursts. It’s something much less dramatic, but all the more sinister — unreliability. Perceived flakiness. An apparent inability to do simple math. Or spell. Or use proper grammar. Perhaps it’s failure to deliver. Over-promising and under-delivering.

The last one is the most sinister of all. It makes you look like you’re either completely out of touch with reality or — worse — a liar. One slip, and you’re suspect. Another, and you’re a marked person. One more, and you’re written off. Yet another, and you’re doomed. The world can tolerate a lot of variability, but the world of work and accountability is brutal on those who fail to deliver what they promise. It’s sink or swim. Life or death. With the economy the way it is, and the global marketplace as competitive as it is, there is even less margin for error, than there was 30 years ago.

It’s not just the case for the workers of the world — also for the spouses, the friends, the family members, the community members. There’s just not that much tolerance, anymore, for those who don’t measure up. Perhaps there’s never been. But in this world we have made, the stakes are much higher. 500 years ago, you could retreat to the forest and survive. Now, nobody really remembers how to live on the land. We are much more interconnected and interdependent than ever, yet our tolerance for variations in human expression has not kept up.

We have invented a world for ourselves that has no room for many of us.

Where, then, shall we go?

Within.

It’s the only place that’s safe anymore — and that’s a relative statement, in any case. After all, within is where you store the collective memories of all your screw-ups. It’s where you wrangle with the very real recollections of your own failings, the collected experiences of your shortfall. It’s where you have to live with yourself, like it or not. It’s the one place that who you are and what you are — and are not — capable of, is very clearly known. Except when it’s not.

Within is a haven that has significant limits, to be sure.

But within, at least you have a chance to sequester the truth of yourself and your limits in their own company, and they can keep each others’ confidences in the silent corners of your mind. No one needs to know, just what a hard time you’re having these days. In fact, no one wants to know. They have their own troubles. And how they have their own troubles. Nobody likes to think others have troubles nearly as bad as their own.

Funny, how people are like that. If you step forward and ask for help, you stand a better chance of being smacked down than given the help you need. You stand a better chance of being reprimanded and chastized, than assisted, even if you ask for specific kinds of help. “Everybody has problems with something… Look at you – you’re lucky! You can still walk and talk! You still have your health! Some people have it really bad — at least you don’t have MS or Cancer or Parkinsons or Alzheimers! Stop complaining and just live your life.”

Buried in the litany of “real” problems that other people have, there’s a common theme, a recurring chorus, that goes, “I’m in pain too, but I don’t vex the rest of creation with nagging pleas for help. If I can suck it up, you can too. Get with the program, cowboy, and just deal with it. Oh, by the way, have you paid your taxes yet?”

Looking without for assistance is a tricky thing. You may be better off, not even trying. If it’s logistics, like staying alive during a long, cold winter, then yeah – speak up. But if it’s “higher” functioning stuff like memory or fatigue or distractability or behavioral issues, chances are you’re better off keeping your own confidences.

You may wish to keep the bad news about the havoc in your life to yourself. I do. And it’s working out better for me, than when I told people the whole truth about my situation. I’ve learned to keep my mouth shut about it, for the rest of the world simply does not, cannot, and will not understand. Most people have their own troubles — ironically, much of it their own making, due (among other things) to poor time management practices, crappy sleep hygiene, and bad living habits. It’s not neurological with them. It’s either mental laziness, lack of character, or addiction to drama. They create their own overwhelm, and then they liken their situation to mine.

Ironic, to say the least. I could teach them a thing or two about time management and improving performance. The fact that I can get as much done as I do, despite the limits I’m dealing with, says a lot about how-well designed and oiled the “machine” of my life is. I should bottle my system and sell it. I’d be rich, if I could. But most folks I know are heavily invested in their self-created drama, they’re getting by okay, in spite of their chaos, and they don’t see anything wrong with it. Me trying to get help from them to fix something they don’t think is a problem — somethign that they think is just how life is – when I know differently — is like trying to outlaw drinking on a cruise ship.

Yes, most folks have havoc enough — self-created as it is. And they can’t for the life of themselves fathom why others (whom they assume have self-created their own havoc, just as they have), are whining about needing extra help getting on with their lives.

Outside the mind, the odds of getting your needs met as a traumatic brain injury survivor (or as a significant other of one) are slim to none. Money is tight, after all. Only the most severe and obvious cases stand much of a chance of qualifying for help.

But there’s always within… When you keep your own confidences and you hold your own counsel in the privacy of your own mind, you have a chance to make right the very things you know for a fact are wrong. You can work with your demons on your own terms, in your own time, without the messy meddling of others who may say they understand, but really don’t. Within, you have a chance — if you know yourself and your situation for what they truly are — to negotiate and navigate and accommodate and mediate… to adjust and tweak and compensate. And just get on with your life.

Outside, there’s precious little that anyone else can do for you. Sad, but unfortunately generally true. People don’t know shit about brain injury. Nor do they want to. They’ll glance at the billboards and skim over the ads in the magazine, and get on with their busy, havoc-filled lives. And never give it a second thought.

But within… there you have a chance. Only you know just how messed up things can get. And only you can identify exactly what is wrong. Only you can know for sure if the results are what you planned. The rest of the world thinks you meant to say or do such-and-such. Only you know the truth — that what you did or said was anything but what you planned and intended.

Havoc… catastrophe… conundrum… confusion… Screw-ups… Failure… teetering on the brink of collapse…

Nobody truly knows about it, but you.

So, what will you do?

The force of habit

I didn’t want to exercise, when I got up this morning.

But I did it anyway.

I was feeling “gunked up” and sluggish and I have a lot to do. I didn’t want to spend the first half hour of my day riding the bike and lifting my 5 lb weights.

But I did it anyway.

And I’m glad I did.

I would like to say that I was able to follow through with my morning routine because I realize it is good for me, and I look forward to doing it every single day. But that would be untrue. Fact of the matter is, I’ve built this routine into my daily schedule so completely, that to veer from it or deviate in any way causes me intense anxiety. Its not so much high-minded intentions and enlightenment that gets me on the bike and stretching and lifting weights, first thing. Its the sheer force of  a strictly enforced habit.

A friend of mine tells me it takes six weeks for a habit to form. Well, I’ve been at this morning routine for nearly six months, and its so ingrained in me that doing something different is not a prospect I relish. I have a tendency to intense anxiety and nervousness — and I use that to my benefit, by creating positive, constructive structures which cause me intense anxiety if I deviate from them.

If you can’t get rid of your neuroses, you might as well put them to work for you. That’s what I did this morning. And I’m glad I did.

‘Cause now I feel a whole lot better. My sinuses have cleared, my body feels more awake, and I’m mentally much clearer.

Clear is good. I have a lot to get done today. It’s Sunday, and part of me feels like I should be taking it easy, as I had such a rough and long week, last week. But if I work this right and play my cards right, I can actually settle into what I’m doing and take it easy while I’m doing it.

Easy does it, say friends of mine. After hearing them say this for 20 years, it’s starting to sink in.

About time

Anyway, this morning I realized I’ve run out of my pre-printed daily tracking forms, and I had to go back to writing things out by hand on scrap paper on my clipboard. In a way, I like this better. I’ve recently realized that the more stressed I am, the worse my handwriting is, so I can use that as a measure of how tweaked I am over things. Since being tweaked over things sets in motion a whole bunch of complications that set me off-track — I start to load up all sorts of extra activities on myself that do not need to be done — I’ve realized that I can gauge how well or how poorly I am doing, in general — and how well or how poorly I am likely to do through the course of the coming day  – by my handwriting.

Having a pre-printed form with lines on it that keeps me neat and tidy is actually a short-cut that keeps me from having to really focus in on my handwriting. It’s also a little bit of a crutch for me, as it structures my day for me and tells me what I’m supposed to do — and when. I’ve been very much in need of that kind of structure, for the past decades, and I’ve suffered with out it. Stuff just didn’t get done. It just didn’t. Important stuff. Stuff that I’m now paying the consequences of not finishing. And a lot of stuff got started and commitments got made that had no business ending up on my plate. Not having that structure, not having a consistent way to go about things, was — well — in some cases small-scale catastrophic.

But in the past couple of years, since I realized what havoc mTBI has played in my life, I have done a really focused and intensive job of ordering my life in a much more constructive way. I’ve created routines for myself specifically to strengthen and support the parts of me that need help. I’ve taken myself to task for lots of things that I messed up for no good reason, and I’ve taken steps to remedy them. I’ve really stepped up in many, many aspects of my life that used to either languish or fall by the wayside. And I’ve made tremendous strides in the past 18 months — largely because I suddenly realized that I had problems, and those problems needed to be solved.

Now I find myself not only able to follow through with the required activities I set for myself each day, but I’m also better able to manage the optional ones.  I’m also better at distinguishing which ones matter and which ones are wishful. I am better and not packing my plate full of things that “must” be done, and I’m better at deciding which ones are energy drains and not contributing to my overall progress.

It’s been a long time coming, but it’s finally starting to come together. And a key part of all of this has been the force of habit. Identifying what I’m going to do, and doing it religiously, each and every day without fail. The things that are important to me — like exercising — I do every single day. Without fail. At the same time, each and every day. Without fail. And it’s the daily aspect of it that I think really makes a difference.

Now, a lot of people say that you don’t have to exercise every single day, in order to get benefits. Well, I tried that, and in my case, if I don’t do my exercises each and every day, I end up forgetting about them, doing other things, and not doing them even once a week. Trust me – I’ve tried to do the “half-way” fitness routine, and it doesn’t work. So, I broke the cardinal rule of fitness and I do my workout every single morning.

No, I do not give myself time to “rest” between daily workouts. I do not give my body time to “catch up”. But I also don’t push myself really hard every single day that I exercise. Some days, I’ll put a little more into bike ride, pushing myself to work up a sweat. Or I’ll focus on more weights with my lifting, so I feel a little sore the next day. But I don’t give myself time off, because by this time exercise has become like any other daily activity — like eating a meal or sleeping. It’s just part of my daily routine. It’s just part of my life.

Force of habit to the rescue.

And now that I’ve got the exercise thing down — which still takes discipline and determination, some days, like today — I can extend that into other areas of my life. I’ve been giving a lot of thought to what I want my life to be like, on down the line, and I’ve been giving a lot of thought to what parts of my life now are contributing to making that a reality later. I’ve come to the realization that my neurological and physiological issues may never go away and I’m going to have to factor them in at every turn, but I’ve also proven to myself that I am capable of positive change, and if I follow certain steps and do so consistently, I can — and will — make the kinds of changes I need in my life.

I may not be able to get back the years and the money and the relationships which fell prey to my injury, but I can work towards building something new for myself which is a reflection of what capabilities I have, and what my character truly is.

Ultimately, for me, the real power of the force of habit is about it relieving me of the need to think through every single action I take. Developing good habits frees up valuable time and energy I would otherwise be spending considering the pros and cons of what I’m doing, getting my head around the reasons why I’m doing them, and convincing myself they’re worthwhile. Developing rock-solid habits around good activities and behaviors enables me to focus on the important stuff — the actual doing of the activities, not the constant thinking about them. Developing positive habits frees me from analysis paralysis, and it acts as a kind of artificial executive function that keeps things running smoothly, even as the thinking parts of me are noodling about how to go about things.

Set-in-stone habits take care of the What and Why, so I can focus on the How.

And that’s a good thing.

So, that being said, it’s time to come up with some more habits. It’s time to create some more structure around what I absolutely positively need to do, in order to get where I’m going. This morning I created my daily planning list without the benefit of a pre-printed form. And my day is progressing really well anyway.

Good, good, good… and more good.

The downward spiral of fatigue

It’s wild – it starts with the best of intentions. It’s exciting… very exciting to life my life, to go-go-go, to do lots of things and get tons of stuff done.

But if I don’t watch myself, I can get into trouble pretty quickly. If/when I get over-tired (and at the rate I tend to to, it’s usually a question of when I’ll get over-tired, versus if that will happen), a downward spiral starts in, that just won’t quit, till I start to rattle and shake like the USS Enterprise being pushed through an asteroid field at full speed. (And I hear Scotty yelling, “Cap’n, she’s breakin’ up! I can’t give ‘er anymore!“) I question my sanity, my ability to cope, my ability to live, and I’m exhibiting symptoms that someone who doesn’t know better would interpret as mental illness.

It’s not mental illness, per se. It’s my brain acting strangely under abnormally taxing conditions.

Here’s how things steadily go downhill…

And before I know it, I’m in trouble. I’m angry, I’m emotionally volatile, I’m raging, I’m blowing up at people, I’m melting down into a pile of quivering agitation, I’m irrational, I’m over-reactive, I’m hyper-active, I’m everything I know I should not be, but I am powerless to prevent it.

Also, I am in pain. Not just the muscular/skeletal pain that comes from over-exertion, but the surface pain that comes from fatigue, that makes everything hurt, from my clothing to human touch. It’s awful, and there’s nothing to do to stop it, when it’s full-on.  Advil doesn’t help. Only sleep does — days and days of extra sleep.

The thing is (the pain aside), a lot of the behavioral problems that come up are a result of how I perceive myself in relation to the rest of the world. Yes, I’m emotionally volatile. Yes, I’m losing it when I should be keeing cool, but it’s not so much that I am in trouble over things I’m doing — the real trouble happens and I get bent out of shape, when I misinterpret what I’m doing. I assume that because I’m having problems keeping things straight in my head and I’ve gotten turned around, that I’m screwing up (yet again) and I’m a mess, I’m broken, I’m damaged, I’ll never amount to anything, yada-yada-yada-yada-yada-yada-yada-yada-yada… an unbelievable amount of agitation results, which feeds back into the insomnia/fatigue loop. And that just makes my behavioral issues worse.

I’ve been seeing this more and more, lately, as my sleeping habits have deteriorated. They truly have. It’s been very fun and exciting to do things late into the night (as in, after 10 p.m.), but it’s cost me dearly, in terms of peace of mind, not to mention being able to deal effectively with increasing demands and challenges.

Stop the madness!

Seriously.

So, I have re-prioritized rest. I’ve bumped it up to the top of the heap. And I’ve made some small but important adjustments in how I do my work, so I have a better handle on things.

Objectively speaking, I’ve actually been dealing with some of the challenges and demands quite well — but because I’m so tired, I can’t really accurately assess how well I’m doing. So, when I feel like I’m having trouble, I assume I’m not doing well at all… and my successes are nearly lost on me. Unless someone can talk me through them. Like my spouse or my neuropsych.

Speaking of my neuropsych, I had a really great meeting with them  last night (thank heavens), on the spur of the moment. I was in town, they were in town, they had an opening in their schedule, and I had a sudden cancellation on mine. So, we managed to meet for a few hours. And after checking in with them about some recent experiences that had thrown me for a loop, I realized that I had actually done extremely well under very demanding and challenging circumstances. The biggest hurdle in all of it, was me being so tired that I couldn’t think clearly about what had really happened that was good.

I was so tired, nothing seemed good. But it actually was. So, my neuropsych talked me back from the brink of despair. And then I went home and  got to bed at a decent hour — 9:30 p.m., thank you very much! — and I woke on my own after 8 solid hours.

Wonder of wonders.

And suddenly, the world looked a lot better. The “mental illness” subsided, my mood disorder cleared up, my crappy attitude and biting self-criticism subsided, and I was able to get on with my life. Like a normal person.

And I’m back on track with watching myself more closely than I had been, taking my issues one at a time through the course of each day, and addressing the real underlying problems when they come up, so I can get on with my life, despite them. I’ve refined my daily log for what I have planned and what I really do. I’ve become quite diligent about keeping notes on my daily activities, and now I’m furthering that even more with a better kind of journal that helps me a lot.  Tracking my activities and the results is one sure way to see how I’m doing, from day to day. My brain will tell me any number of things about how I’m doing — many of which may in fact be untrue. But if I’ve got my notes, I can see for myself how I’m doing.

Onward…

Narrowmindedness breeds disability

Permanent Vacation is a post everyone should read. It’s important. And it’s true. And since the chances of you getting through life without encountering at least one person who needs a little extra help are slim to none, you should read it, think about it, and let it guide your future thoughts and actions.

The issues around disability have been a regular part of my life for a long time. I’ve lived with disabled people, and I’ve worked with them.

Back in the day before I fell down the stairs in 2004 and my life almost completely fell apart, my day job was ensuring that large-scale websites were accessible for disabled folks and others with accessibility needs. Accessibility isn’t just about helping the blind use a website, or offering text-based alternatives to audio for hard-of-hearing or deaf folks. It’s also about making a website usable for folks who can’t use a mouse (too much mouse use can do that to you – trust me), or for folks who needed text to be larger than the 20-something-chosen miniscule stylized fonts that folks born after 1980 seem to be particularly fond of. It covers everything from how you navigate a website to how you use the information. There’s a lot to cover, and a lot of software engineers don’t want to bother with it.

I’m not sure why – it’s just basic human decency that drives the accessibility train.

At the time I was making websites more accessible, I had no idea that one day I would have my own disability to deal with — a twice-hidden disability, no less, which is as adept at hiding itself from me, as it is at hiding itself from others. Granted, one of the things that obscures TBI as a disability is the fundamental human aversion to brain problems. We don’t want to know about it, don’t want to think about it, don’t want to explore it, and we certainly don’t want to have to live our lives around a traumatic brain injury, concussion, whiplash, or whatever else you care to call the damage to what’s between your ears.

There’s a weirdly Darwinian streak we all seem to have within ourselves, when it comes to surviving head trauma. Either we heal, or we don’t. Either we’re okay, or we’re not. No middle ground. No gray areas. No good days or bad days. Just OK or NOT OK. And if you can’t make a go of living your life after you’re diagnosed and have treatment… or after having a few days/weeks/months off to get back on your feet… and if you can’t go back to functioning as normally afterwards as you did before, then you deserve to be shunted to the back of the room/bus/line, as someone who is “just not trying hard enough.”

Well, there’s head-injured, and then there’s stupid. These kinds of attitudes towards head-injured people are just plain stupid. And they do more to hinder the long-term well-being of TBI survivors, than any amount of brain trauma.

I could get incredibly riled over this — and believe me, I have in the past — but I’ve got a full day ahead of me, doing things I love to do, so I’m not going down that road. I will say, however, that if people could just get some basic facts about head injury and its effects… if people in general could just realize that an injury to the brain is indeed an injury and it never stops affecting the person who was hurt… if people could just step back and take a little bit more time and stop being so haughty and egotistical in their attitudes toward disabled and otherwise challenged folks, the world would literally be a better place.

See, here’s the thing… A serious, enduring injury (like TBI) is not the sort of thing you can heal all on your own. It’s not like a broken leg. You can’t put a cast on it that people can see and sign — and help you with, when you’re approaching revolving doors. The brain (especially) has a way all its own, and it’s a mystery to even the most accomplished experts, how it heals — and why. And while the brain may restore itself to some extent, the full-spectrum impact of a TBI is not the sort of thing that can be healed only by the physical knitting together of the severed connections — which can actually never be restored to their pre-injury state… Once the damage is done, it’s done (from what the experts say).

The full-spectrum impact of a TBI can touch every aspect of your life, from your sleep/wake cycles, to your tolerance of heat and cold, to your ability to understand what people are saying to you, to your tolerance for frustration. It can make you jumpy and irritable and verbally abusive, and it can cause you to say and do things you would never want to do, by reducing your brain’s ability to inhibit unwanted words and action.

And what’s more, the changes don’t just affect the injured party — they affect everyone that person comes in contact with, either directly or indirectly. Even if you manage to present as perfectly normal, even if you manage to keep your act together on the surface, if you’ve got TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

Here’s how you can get into trouble, thanks to a TBI:

• TBIs have a nasty way of slowing down your thought processing speed.
• Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
• Increased distractability can lead to “careless mistakes”.
• These can lead to arguments with others.
• Arguments can escalate if your flashpoint threshold is low.
• A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.

Now, if the people you’re dealing with have no idea that you’re having trouble sleeping, and you take a little while longer to process what’s happening, and they don’t have a clue how quickly your temper escalates (through no intention of your own, by the way), that just compounds the problems. Everything is complicated by impatient people who are in a hurry to get stuff done, without being mindful of the one they’re dealing with. Nothing is easy, when someone does stupid stuff to provoke you, or doesn’t cut you any slack. A hidden disability has a nasty way of getting worse, when you have to deal with someone who has no compassion and no patience for others who are just operating at a different speed than them… and who say and do unkind and hurtful things, just because they can.

Truly, it doesn’t have to take much to help someone with a disability like TBI get through the day. All it takes is some understanding and humility and respect. If you know full well that everybody has issues, that everybody has an impairment of some kind (large or small), and you understand that people-helping-people is a great way to not only get the job done, but also humanize your interactions, then the abilities of both parties are enhanced, countless issues can be avoided on the spot.

The injured person standing at the counter gets an extra few minutes to figure out what they want to do, and the person waiting on them gets an extra few minutes to catch their breath in the midst of a busy day. It’s not a bad thing.

But if the people you’re dealing with don’t have patience and compassion and aren’t willing to cut you a break, they create havoc for both you and them. The lack of simple, fundamental human decency, and a close-minded judgment of those who are different in some way, does far more damage in the long run, than the actual injury itself. Treating the disabled like they’re sub-human registers with us on a deep and fundamental level that wreaks havoc with our concentration, our focus, our available energy stores. Instead of solving a problem, like ordering from a menu or discussing a customer service issue, we’re plunged into a life-and-death battle for our basic human dignity. When people who are supposed to serve us refuse to treat us with respect, we walking wounded have to shift our attention away from the real problem we’re trying to solve, and shift over to the debasing challenge of convincing the person who’s supposed to help us solve the problem that we deserve to have the problem solved.

Which is a total friggin’ drain — one that should never have to happen.

Look… everyone has issues. Can we agree on that? Everyone has some problem of some kind. There’s no escaping that fact. Some of us have more obvious or more comprehensive injuries than others. But it’s really how we deal with our problems, and how we treat others who have different kinds of problems, that determines the debilitating effects of the injury.

If someone with a TBI has more problems when they’re rushed and pressured, then others can help them out by not putting all sorts of pressure on them, and not rushing them to do and say things they need to think through, first.

If someone with a TBI has more problems when they don’t get enough sleep, then their friends and family can help them by not demanding that they stay up late to watch a movie or television with them.

If someone with a TBI has hard of hearing, then others can help them by talking directly to them, not covering their mouths, and not making additional background noise while they’re talking.

But if everyone who thinks they’re okay is locked into the idea that if you don’t behave in such-and-such a way… or you don’t think or talk at such-and-such a speed… there’s something wrong with YOU, then the small problems become much larger. And the after-effects of injuries become even more debilitating.

Ultimately, I believe there is a solution to almost every problem out there. And with the right information and the right mindset… the right education and intention, issues that are sticky can be unstuck, and disability can be diminished. But if people who are supposed to help, flatly refuse to do so, then they themselves are helping to create and perpetuate true disability.

It’s not the injury that’s ultimately the problem. It’s ignorance and smallmindedness.

Doing it differently this holiday season

I did something quite unusual last night — I went Christmas shopping by myself at a much slower pace than usual. I didn’t manage to buy everything I set out to, but I got everything I could, and I got through the experience in one coherent piece — and I was able to get my nap after I got back.

Normally, this time of year is marked by team-shopping with my spouse. They contact everyone in the family and find out what people want… or we talk about what we think people want, and then they make up the list. We take the list, hop in the car, and head out to stores that look like good candidates, then we slog through the process of elimination, muddling our way through… with me getting so fried I either completely shut down and become non-communicative, or I melt down and fly off the handle over every little thing.

We usually spend several evenings like this, ’round about this time of year, and we’ve both come to dread it a little. My meltdowns had become more extreme over the past few years, and this year we were both really dreading the whole Christmas shopping business — to the point where we are going to be late(!) with presents for family members in other states. That’s never happened before. We were always good about it. But my meltdowns screwed everything up.

We both recognize that doing a lot of social things, this time of year (when work is actually getting more crazy, what with year-end and all), takes a huge toll on me. Even if it’s with friends (especially with friends), all the activity, all the interaction, all the excitement, really cuts into my available energy reserves. And then I get turned around and anxious… and I either regress to a cranky 9-year-old state, whining and bitching and slamming things around… or I melt down, start yelling, freak out over every little thing, and start picking at my spouse over things they say and do, to the point where neither of us can move without me losing it.

What a pain in the ass it is. Of all things, the uncontrollable weeping bothers me the most. The yelling bothers my spouse. It’s embarrassing for me and frightening for them, and neither of us has a very Merry Christmas, when all is said and done.

So, this year we did things differently.

We split up for the day and took care of our respective activities.

My spouse went to a holiday party that was thrown by a colleague of theirs who’s married to an attorney who deals with financial matters. I was invited, too, but we both realized that it would be pretty dumb for me to try to wade into the midst of 50+ actuaries and tax attorneys and their spouses who were invited to the shindig… and try to hold my own. Certainly, I can keep up with the best of them, but marinating in such a heady soup, especially with everyone hopped up on holiday cheer (eggnog, red wine, punch, etc.) and all animated and such, would have been a recipe for disaster.

So, I didn’t go. Instead, I took our shopping list and headed to the mall to stock up on what our families had requested. We had written down in advance all the names and the specific gifts we were going to get, and we had also written down where we were going to get them. That list was my lifeline. Especially in the rush and press of the mall, which sprawls out in all directions, with satellite stores on either end.

I’m happy to report that I actually did really well. I made a few tactical errors — like not parking in the first lot I came to and walking in. But that turned out okay, because if I had parked in the first lot, it would have been all but impossible to get down to the other end of the mall. I studied the list carefully ahead of time and used a highlighter to mark the stores where I’d be going. I also kept my focus trained on the task at hand — even if it was just sitting in traffic. I also walked a lot more this year than other years. I found one parking space and used it for two different stores. And I didn’t hassle with finding a space that was as close as I could get to the building. I took the first decent spot I could find, and then I walked to the store.

Imagine that — in past years, I was possessed with finding parking as close as possible, and I would move the car between stores, even if they were only 500 yards apart.  This year, I just walked the distance. Even though it was cold, for some reason the cold didn’t bother me, and it actually felt good to be out and moving.

I think that my 5 months  of daily exercise has paid off, in this respect. I think part of the reason I was always consumed with driving everywhere was that I just wasn’t physically hardy. I was kind of a wimpy weakling, in fact — though more in thought than in body, but a wimply weakling, all the same. But having a good physical foundation — even just from doing an hour (total) of cycling, stretching, and light lifting each morning — has made a significant difference in my willingness and ability to walk between stores.

It might not seem like much, but the walking (instead of driving) between stores part of the trip actually made a huge difference in my overall experience. Walking between stores — stopping at the car on the way to stash my presents — helped me break up the activity and clear my head. It got me out of that in-store madness, the crush and the rush, and it got me moving, so I felt less backed-up and agitated. And that let me start fresh at the next store.

That was good, because the first store was a friggin’ nightmare. It was one of those big-box electronics places, that supposedly has “everything” but really didn’t. It was exhausting, combing through the stacks of movies and music, only to find everything except what I needed. The lighting was awful — extremely bright and fluorescent and glaring. People kept bumping into me, or walking so close I thought they would run me down. But the worst thing was the acoustics. Everything surface was hard and echo-y and the place was overwhelmingly loud, and every single sound was at least partially distinguishable, which drove me nuts. I’ve noticed that acoustics have a lot more impact on me than light, when I’m out shopping. The store was one big cauldron of loud, indiscriminate noise, and my brain kept trying to follow every sound to see if it mattered. I couldn’t function there. Not with the place full of people — and very agitated, anxious, aggressive people, at that.

I eventually went with a gift card and got the hell out of there. I doubt I’ll ever go back when it’s that full. When the place is low-key and all but empty, I can handle it much better. But at this time of year? Not so much.

Walking back to my car chilled me out. Sweet relief.

At the second store — a bookstore — I started to feel pretty overwhelmed. They had long lines, and the place was packed — which is good for the retailer, but not so great for me. I spent the longest amount of time there, in part because I could feel I was getting overloaded, and I stopped a number of times to catch up with myself and remind myself what I was there to buy. My list was getting a little ragged, at that point, what with me writing notes in the margins and taking it out/putting it back in my pocket. So, eventually I just pulled it out and held onto it for dear life. I must have looked a little simple-minded, but I don’t care. Everyone else was so caught up in their own stuff, anyway. My main challenge there, was not getting trampled by Women On A Mission — many of them carrying large bags and shopping baskets that doubled as ramrods to get through the crowds.

One cool thing happened, though, when I was taking a break — I had a little exchange I had with two teenage boys who were talking about some book they’d heard about. I was just standing there, pretending to look at a shelf of books, just trying to get my bearings, when I hear this one young guy tell his buddy, “I heard about this book I should get — I think it’s called the ‘Kama Sutra’ and it’s, like, about sex, and it’s got these pictures… and it’s really old… like, from India or something.”

Well, I perked up at that, and suddenly very alert, I looked over at them and said, “Oh, yeah — the Kama Sutra, man… You should definitely check it out.”

They kind of looked at me like deer in headlights, and they got flushed and flustered and stammered something about not knowing how to find it. It was about sex, and they didn’t know how to ask someone to help them. I so felt their pain…

I confidently (and confidentially) pointed them to the book-finder computer kiosk, where they could type in the title and it would tell them where to find it in the store.

“Dude, you should totally look into it. It’s got lots of information — and pictures — and it’s been highly recommended… for hundreds of years.”

They got really excited and headed for the book-finder kiosk. Here’s hoping they — and their girlfriends — have a very Merry Christmas.

That little exchange got me back in the game, so I took another look at my list and managed to find the handful of books and music and calendars I wanted to get. I headed for the line and just chilled/zoned out. I didn’t get all tweaked about how long it was taking; I listened in on a conversation for a while, till I realized it was mostly about death and health problems people were having.

Oh – and another thing that helped me keep my act together, was the 4:15 p.m. alarm that I have set on my mobile phone. 4:15 is usually when I need to start wrapping up my day at work. I need to do a checkpoint on the work I’m doing, start to wind down, and begin keeping an eye on the clock, so I don’t get stuck in town past 6:00, which is what happens to me when I don’t watch my time after 3:30 or so. I have this alarm set to go off each day, and it went off while I was in the store, which was a blessing. I had completely lost track of time and I was starting to drift, the way I do, when I’m fatigued and overloaded and disoriented.

It startled me out of my fog, and I knew I still had a bunch of things on my list to get, so I refocused and started thinking about what I would get at the next store, so I could just march in and do my shopping without too much confusion and disorientation. After I paid for my books and music and calendar, I debated whether to have my presents wrapped for free, which might have saved me time in the long run. But I couldn’t bear the thought of having to interact with the folks who were doing the wrapping. They looked really friendly and gregarious — Danger Will Robinson! Warning! Warning! Even a friendly conversation was beyond me at that point.

I realized I just wasn’t up to that, and I must have looked like an idiot, standing there in the middle of the foyer, staring at the gift-wrappers for about 10 minutes, but who cares? Everyone was so caught up in their own stuff, they probably didn’t notice me. And if the gift-wrappers were uncomfortable with my staring, they didn’t show it… too much

Anyway, after I managed to extricate myself from that store, I headed for my last destination. Again, I didn’t sweat the traffic getting out of the lot, and when I got to the final store, I parked at a distance from the front doors and walked in through the icy cold, which was good — it cleared my head.

Inside, I consulted my list again and headed directly for the section that had what I needed. Halfway there, I remembered that I’d meant to buy a very important present at the first store, but I’d totally blanked on it. I started to freak out and got caught up in trying to figure out how to get back to that first store and not lose my mind in the process.  Then, I slowed down and stopped catastrophizing, and in my calming mind, it occurred to me that — Oh, yeah – they probably carried that item at this store, so I went and checked, and sure enough, there it was – score! I didn’t have to back to big-box hell. At least, not that day.

I found some more of the presents on my list, and although I didn’t get everything I needed, I made a decent dent. My partner can come with me and help me sort out the other items either today or tomorrow. Or possibly when we get to our family — they usually have some last-minute shopping to do, and they can cart us around with them. And I won’t have to drive.

By the time I got home, I was bushed. My spouse wasn’t home yet, so I called them — they were on their way home and were stopping to pickup some supper. I said I was lying down for a nap, and they didn’t have to wake me when they got home. Then I took a hot shower to get the public germs off me, laid down, and listened to Belleruth Naparstek’s Stress Hardiness Optimization CD. I had a bit of trouble relaxing and getting down, but I did manage to get half an hour’s sleep in, before I woke up in time for dinner.

My partner had a pretty good time at the party, but they said it probably would have been a disaster for me — so many people, so much energy, so many strangers, and unfamiliar surroundings. I concurred, and I showed them what I’d bought that afternoon.

We’d both done well. We both missed each other terribly, but we did get through the afternoon without one of those terrible holiday incidents that has dogged us for many, many years. Like Thanksgiving, which went so well, this Christmas shopping trip actually felt normal. It didn’t have that old edginess that I always associate with holiday shopping. It didn’t have the constant adrenaline rush. In some respects, it feels strange and unfamiliar, but you know what? If strange and unfamiliar means level-headed and low-key and plain old sane, and it means I can keep my energy up and pace myself with proper planning… well, I can get used to that.

Yes, I’ve done things differently this year. And it’s good.

I’ve decided not to fire my therapist… yet

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

What I do, versus who I am – TBI and Behavior Issues

I have been giving a lot of thought to behavior issues that arise as a result of TBI. Discussing my “eventful” childhood with my parents, in light of the concussions I experienced, brought up a lot of old memories about the bad behavior I exhibited, time and time again.

At the same time, I’ve been meeting with my neuropsychologist, who has been trying to explain to me that relatively speaking, the neurological after-effects of my TBIs are not so terribly severe. For the most part, I have a lot going for me, and I score well in key areas. I do have a few significant areas of difficulty, but I’m really not in terrible shape, neurologically speaking.

I’m still trying to get my head around it. Maybe I’m being dense, but it’s hard for me to see how little is wrong with me.

Because I struggle. Oh, how I struggle. The fact that I’ve been up since 1:30 — wide awake from worry and pain — is evidence thereof. Now, part of it may be the fact that I’m a highly sensitive individual with a lot of life and curiosity and adventurousness in me… which tends to put me on a collision course with the less desirable parts of human experience. A lot of it may be due to that, in fact. But it certainly doesn’t help that my memory leaves a lot to be desired, my processing speed isn’t as fast as I’d like, and I tend to get overwhelmed and melt down.

I don’t want to make more of my situation than need be, and I certainly don’t want to hold myself back in life  by focusing on my limits, rather than my strengths. I just need to understand why it is that I have such a hard time with things that others seem to be fine with. What, in fact, is holding me back?

All things considered, I think most of my day-to-day issues are behavior-related, versus purely neurological. I have had a bunch of head injuries, it’s true, but my MRI and EEG both came back looking peachy, and that doesn’t seem to correlate with the difficulties I have. Indeed, the problems I’ve got with insomnia, anger management, becoming quickly fatigued, trouble getting started, trouble reading, getting turned around and overwhelmed, saying the wrong things and doing things differently than I’d like, seem more behavioral than cognitive.

Well, it’s 4:30 a.m. and I’ve been up for three hours. I’m bushed and I need to sleep. So, for now I’ll just share a number of links I’ve found interesting and useful in understanding tbi and behavior:

• Traumatic Brain Injury: TBI Inform – Managing Behavioral Problems
• Tutorial: Behavior And Behavior Problems After TBI
• Long-Term Behavior Problems Following Pediatric Traumatic Brain …
• Behavior Problems After TBI in Children and Adolescents (PDF)
• Behavior Problems Resulting from Brain Injury
• FCA: Traumatic Brain Injury

Though I can’t say all the changes have been bad…

Thinking about my little enneagram test, I am actually glad that I’ve had to change in some ways. I am MUCH more organized than I was before I realized that if I’m not, I get into big trouble. I am a whole lot more present, in my daily life, and I’m a lot more cautious about things that I used to be very cavalier about.

In some ways, my personality changes have been in response to the TBIs and coping with them — versus them being due to the fall down the stairs… the car accidents… the sports concussions… and the attack. And that’s helped me, more than it’s hurt me.

I really shouldn’t boo-hoo over it. Change can be very good, and everybody encounters stuff they need to overcome. We change in response to the shifting demands of the world around us. And the world changes in response to us, as well.

It’s just interesting to see and consider the kinds of differences that emerge in my life over time. And to remember that deep down inside of me, there is a part that loves to pity itself and cry “poor me!” when better reason would tell me to buck up and just get on with it.

Heck, considering that I’ve been dealing with cognitive-behavioral issues practically my whole life, and I’ve done pretty well for myself, then if I start to decline cognitively in my advancing age, I already have coping skills in place that can serve me in good stead.

I know — I’ll consider myself ahead of the game, and call it a win.

Seeking balance

Every morning I get up and exercise. I don’t always want to, but I do it anyway. As I’m working out, I often have to run through a whole list of reasons why I am doing it, why it’s a good idea, and what I will gain from the experience. I’ve made an agreement and a contract with myself  to do this each morning — in part, to avoid having to go on medication for my trouble waking up in the morning, in part, because it just feels so good to have exercised… after the fact.

One of the big payoffs that I promise myself I’ll enjoy, is improved balance. I have always had vestibular problems (which might have contributed to my falls when I was a kid?), and on and off, I still have trouble with dizziness and lightheadedness. I’m regularly concerned with the threat of additional falls or accidents, due to my intermittently poor balance.

Exercise, it’s my understanding, helps with balance, by strengthening the muscles we use to keep upright. (Especially strengthening the muscles of the pelvic floor — the muscles that keep your internal organs vertical, as well as connect the parts of your pelvis/hips.) It makes sense to me.  I’ve heard that the elderly become more prone to falls if they are weak, so strengthening the muscles with some basic exercises — like I do in the morning, each day — can go a long way towards keeping you stable in a vertical position.

I recently came across the blog Balance Chicago, which talks about vestibular rehabilitation. I will be checking them out, from time to time, as losing my balance is one of the most hazardous things that can happen to me – especially if I’m at the top of a flight of stairs or I am doing something physically strenuous. Falling is a major cause of head injuries — and my most serious TBIs have been due to falling. Out of trees. Down stairs. While playing sports…

But physical balance is only one piece of my puzzle, albeit a very important one.

Just as important to me are emotional and mental balance.  Exercise helps me work out my agitation, first thing in the morning, and it helps me train myself to pay attention to what I’m doing for extended periods AND focus on my form, which also contributes to impulse control. And when I have focus and can manage my attention properly, I find myself more emotionaly and mentally centered.

That’s especially important, this time of year. Thanksgiving is coming up, and with it comes a shift in my daily activities. This could really throw me, if I’m not properly prepared, because I rely on my routine to keep myself stable and sane. Additionally, at the same time that my major support, routine, is being disrupted, more demands are being made on me, in terms of activities and more social interaction. Without proper preparation, it’s a recipe for disaster.

And the fact that I never adequately planned or prepared in the past, is probably a big reason why the holidays in general have been so challenging and traumatic for me.

This year, I’m doing it differently. Together with my spouse and my neuropsych, I am spending a fair amount of time planning and prepping and thinking through the trip out of state to see my biological family. I am walking myself through the days, ahead of time, seeing where I can fit in my exercise routine… checking the weather for the area I’ll be in, so I can tell in advance if I need to take rain gear or not, and I can tell if I’ll need to really motivate myself to get out of the house, first thing in the morning. Next Thursday through Sunday look all clear — a good thing — with highs in the 40s and 50s. So, the weather should not be a discourager for me.

This makes me so happy!

The shift in schedule is also causing me (yet again) to see how important regular routines are for me — and to realize that not having a regularly scheduled time with a psychotherapist is a problem that needs to be solved. My last therapist always had me in the same time slot, with rare exceptions. That was much more doable for me. The next therapist I see needs to make a regular appointment for me. That’s non-negotiable. Well, to a certain point… within reason, of course.

Again, balance is important.

Anyway, one of the other things that’s been in the back of my mind is that this Thanksgiving weekend is the 5-year anniversary of my fall down the stairs of the house I’ll be visiting. I lost my balance at the top of a very steep staircase, and I went down hard, hitting the back of my head on the steps a number of times. And from that point on, my life changed in subtle but rapidly worsening ways, till it was almost too late before I realized something was terribly, terribly wrong with me and my life.

It upsets me so much, that I lost so much — a critical chunk of time out of my promising career, my retirement nest egg, my savings, my credit… and I almost lost my marriage in the process. My inability to parse out what was going on with me caused a lot of things to deteriorate terribly around me, and I’m just now starting to battle back. But I’m battling. And I’m getting back. I’m making amazing progress…

And I need to remind myself of that. Because if I don’t, I get out of balance again, and I start focusing on all the things I’ve done wrong and have messed up.

I don’t want to do that. I want to have a good mix of positives and negatives. I want to be able to see all the amazing progress I’ve been making, over the past few years. And I need to measure my success by new measures that recognize the hidden difficulties I have, and accurately assess my true progress.

I have another appointment with my neuropsych tomorow, who is helping me think through my plans for the holidays. I’m unbelievably fortunate to have this person in my life, and I’m glad that I can help them, too, by doing as well as I am. They’ve told me that I inspire and encourage them, though I’m sometimes not sure why they would say such a thing.

Well, it’s not for me to decide what they should or should not think of me and my progress. It’s just nice to have someone who can objectively understand my issues and truly appreciate my progress — to balance out the people can’t, won’t, and don’t.