Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

Nearly there – on the eve of Christmas

Christmas wrapping
The final push is on…

I’m supposed to be shopping, right now. I intended to get up early and head out to a local department store to pick up the last of the gifts I’m giving. Then I was coming back to deal with one of the cars having a nearly-flat tire. Then I was going to run some last-minute errands, followed by a nap, followed by gift wrapping, followed by making the Christmas turkey, followed by preparing the trimmings, followed by more gift wrapping… and then finally supper.

It sounds like a lot, only because I have it all broken into different pieces. But breaking things up into different pieces and then scheduling each one in its own time slot actually makes it much easier to take care of everything.

Because it’s all got to get done. It’s not like it’s optional. The gifts need to get wrapped, and the food needs to get cooked. The car needs to have sufficient air in the tires, and I have to have my nap. It will all get done… so long as I keep my cool.

Yesterday, I talked about how I need to keep my cool around my spouse when tensions get high. And it’s true. As much because of their cognitive issues, as mine. Last night, I was feeling really rushed, and I was having a lot of trouble keeping my thoughts straight. I have not been good about keeping on my sleeping schedule. My spouse has been especially needy/demanding, this year, and they have also been having more trouble thinking things through, which makes them more emotional and more volatile.

So, to calm them down, I have been staying up later in the evening, watching television, and adapting more to their schedule, as well as their eating habits (I’ve been eating a lot more bread than I should, which is messing me up, because my body can’t handle the gluten/wheat as well as it used to). It’s great for them, but it’s terrible for me. And it wears on me, after a while.

I was feeling really pressured, and I said something that my spouse took the wrong way. They took a lot of things the wrong way, yesterday, for some reason. They’re feeling depressed and isolated and not that great, physically, so that’s an added stresser for them. And they take things the wrong way, getting all riled about things I say and do, which I’m trying really hard to not do wrong.

So, painful awkwardness ensued, and it took most of the evening for things to even out again.

Man, oh man, I cannot wait for Christmas to just be over.

Well, anyway… I’ve got a week and a half of time off ahead of me (oh, except for a few hours I need to work, next week, to balance out my vacation/work schedule). And I need to be especially protective of myself, my time, and my energy, while I’m home. We have a number of scheduled activities we have to go to — doctors and social gatherings and errands to be run — so I need to keep balanced, and keep my system in good shape.

That means exercising as usual, each morning. That means being smarter about what I eat and drink (making sure I drink enough water). That means being firm about the times when I got to sleep, and not being pressured to shift my schedule later, just because I’ve had a nap.

I felt sick all during the Thanksgiving holiday, because I wasn’t keeping on my sleeping schedule. And I don’t want to do that all over again. I’m feeling a little sick, right now, actually. I just have to get everything done. And then do it.

Could be, I have to call AAA to add air to that tire, since it might not be safe to drive on it. But I can easily do that while I’m taking care of everything else at home. I just call them, and they come. Or I may need to change the tire, period. Either way… as soon as I get back from my department store trip, I’ll have the rest of the day to sort everything out. So, onward and upward. I can do this.

I just need to be diligent about it, act like the adult I am, and keep my eyes on the prize — a wonderful week off, when I get to relax and actually do some of the things I never get to do, otherwise, while I have more than one hour of uninterrupted time to focus and concentrate.

Luxury. Pure luxury.

Okay, enough mooning about this. Time to get a move on and get this show on the road. I’m nearly there… I’m nearly there…

Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

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…

The Downward Spiral of Agitation and Fatigue

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.