Taking good care of myself

Sometimes….

Well, my spouse has done it again. We were supposed to leave for our vacation today around noon, and now they tell me that they’re not going to ready in time. They may — may — get up by 11:00.

That’s pretty disappointing. But then again, we are taking two cars, so I’m not going to be dragged down by their sluggishness. I have to come back home on Sunday night in order to be at the office from Monday through Wednesday. Wednesday night, I’ll head back out to the condo we’re renting, a few hours from home, and I’ll work remotely in the morning on Thursday and Friday, then take afternoons off.

I’m not sure why this “change in plans” surprises me so much. Maybe because my spouse is picking up another friend to join us for a few days, and that friend’s family is going out of their way to drop them off half-way. It seems incredibly unfair to everyone (except my spouse), that everyone’s schedules need to be re-jiggered to accommodate them. People have better things to do, than wait around to find out when they should leave the house.

If anything, it seems a bit sociopathic on my spouse’s part – like nothing matters except them and their own wishes and needs. Then again, they do have neurological issues, as well as some cognitive impairment and possible dementia, so they may not even realize that they’re being selfish. The whole neurological decline thing is a real drain, and if you forget what’s going on with them, it can be maddening. When they’re challenged, they get really angry right off the bat, possibly because they get scared at being caught unawares and not being able to think right away. They lash out and yell and threaten and cry and so forth. On the one hand, some people think they’re being manipulative, but I think it’s also a sign of cognitive decline. They really do get scared — and then they use their anger and blustering to stop me from saying or doing anything else… and that way they buy some time to catch up.

The thing is, once they get past their hemming and hawing and blow-harding, they re-orient themself to what’s happening, and then they calm down and can carry on a usual conversation.

The main thing for me is to not take things personally and get really upset when they start acting out. That happens all too often, and I forget that they’ve got cognitive issues. I take it personally and get so upset and bent out of shape — everything balloons in my mind, till the argument is not about what’s happening right in front of me, it’s about everything and anything that’s possibly related to my frustration at that point in time. My own brain goes haywire, too, so we feed off each other — and not in a good way.

Fortunately, I am getting better about checking in with myself and telling if I’m starting to get too wound up. Then I can back off — just walk away and cool off, and give us both a chance to simmer down. It’s just both our brains going haywire, and we both get scared. And we lash out. It gets to be a little much, to tell the truth, and some days I just despair about that downward cycle. But if I can step away and have some time to myself and get enough rest, that helps.

Taking care of myself really needs to be my top priority, in dealing with my spouse. When I get tired, my brain doesn’t work well, and of the two of us, I’ve always been the more functional — by a lot. I’ve been their caregiver, pretty much, for nearly the whole time we’ve been together. Their health has often been bad — especially their mental health, and after a serious neurological illness they had back in 2007. They’ve got a ton of history behind why they’re so mentally ill, and there’s plenty of reasons why they have the issues they do. Panic. Anxiety. Depression. Paranoia. Verbal aggression. A real roller coaster of emotions — with very little calm in the meantime.

Does it get old? Oh, you betcha. But they’re the love of my life, so you take the bad with the good.

And you take care of yourself.

So, this “vacation”, I need to be really clear about what I will and will not do. I need to not bend over backwards for them, just because they’re on vacation and think they should be treated like royalty. They’re not the only person who deserves a break, and I need to get some rest, too. In some ways, coming home from Monday to Wednesday is going to be a real relief for me. I’ll have the house to myself, I’ll be able to eat whatever I like — actually much healthier than how my spouse will eat. And I’ll be able to get to bed at decent times without that late-night drama they love to stir up.

So, it’s all going to work out for the best, I believe.

I just have to remember that my spouse is actually impaired in some significant ways, and I need to adjust and adapt and plan ahead.

And not get my hopes up for things that have never happened before, and will probably never happen, period. Like getting on the road at the pre-agreed time. Or having a low-key and very no-nonsense sort of trip.

The main thing is that I find a way to really enjoy myself, take care of myself, and actually get some rest. The condo where we’re staying has three floors, and I’ll be downstairs in a quiet, dark bedroom with couch and desk and its own bathroom, while my spouse will be up on the top floor. It works out well, and it leaves room for both of us to move at our own paces and have some freedom from each other. We’re both getting older and a lot more set in our ways — and a lot less willing to compromise.

More rigid? Yes. But also more discerning, and not so willing to give ground on things that really matter to us personally.

I think a lot of couples find this as they get older. They either split up, or they stick together and find a way to peacefully co-exist, whilst pursuing different interests that are all their own. I know I’m at that point in my life, and it’s not worth hassling over. It really isn’t.

So, I just need to take care of myself and have the vacation I want. Whatever my spouse does, is on them. No skin off my teeth. Not if I don’t let it.

When things don’t go as planned

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A strangely vulnerable place

What does the shadow know?

I recently was pointed to an excellent blog post by someone who writes about disability. Her post No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters really struck a nerve with me. She basically took to task the author of a blog post that went viral, recounting personal struggles with a challenged kid and what she felt she was forced to do. She seemed to truly believe that her kid might one day turn into a shooter like the one who massacred all those little kids and teachers in the Newtown, CT elementary school.

When I read the words of that mother who blogged about her troubled son and publicly “outed” him in ways that can — and will — follow him the rest of his life, frankly it was eerie. And like the author of No, You Are Not Adam Lanza’s Mother, it really bothered me, hearing a mother tell the world about her usually brilliant, sometimes violent son. To all appearances she was calling out for help. I got that. But I also had to wonder – what about her son? And not only now, but what about later?

Certainly, it must be horribly, terribly difficult for any parent to struggle so much with a kid like that. I feel a great deal of compassion for her. At the same time, I also cannot help but think of my own mother, who spent much of my childhood reaching out for support and help from her friends, by telling them what a difficult time she was having with me and one of my other siblings, who was also a “problem child”. I can remember quite vividly the winter vacation we took with the family next door, when I was 12 or so, and I overheard my mother complaining with great anguish about me and my anger. She could not understand why I was so bitter, so angry, so uncontrolled. I’ll never forget the tone of her voice, the disgust, the helplessness, the blame — as though my anger, regardless of the cause, was an insult to her.

I was making her look bad.

After all, my other siblings were so good — except, of course, for the other problem child who ended up addicted to heavy duty drugs, dropped out of high school in 9th grade, and was in and out of trouble with the cops for years. If only we could all be like the other three who were such good kids, such diligent students, so responsible for their age. If it weren’t for the two of us, everything would have been just right — no criticisms from grandparents, no condemning stares from strangers, no tsk-tsk-tsk from the “church family”. Just a nice all-American family growing up together in a happy little unit.

But of course, there was me… the kid who’d gotten hit in the head a bunch of times (not that anyone put two and two together and understand that was why I was so angry, so quick to act out, so impulsive, so unable to keep focused on anything for long). I was a problem. An embarrassment. A puzzle that could never be solved. I was the wedge between my family and perfection, the barrier between my mother and her happiness. My dad spent a lot of time traveling for his work, when I was a teenager, so he got out of dealing with us, most of the time. So, mom was left to deal with me and The Other One. We were her cross to bear. Especially me — at that point in time — age 12-13, when I seemed irreversibly at odds with everything in the world, including myself, and nothing could calm or soothe me except solitude and the company of my own imagination.

And I wonder about that kid who got basted in that blog post. I wonder how he must feel — how he’s going to feel. The sound of my mother’s dismissing, disparaging, judging, disgusted voice in that cabin in the woods, some 35 years ago, stays with me to this day, and it did a number on my head for years after I first overheard it. I cannot even imagine how that kid must feel, having his issues broadcast all over the world wide web, for all to see and read and think they know about.

Truly, it must suck.

What also sucks, is imagining what it means for the kid long-term. He’s been committed, and his mother has publicly said he’s a threat. What are the chances now, do you think, of him ever being admitted to a public school, or for that matter a college? What school would want him? What college — especially considering the episodes at Virginia Tech — will welcome him with open arms, with a record he’s already started at 13? It probably makes no difference if they sort out his meds. It probably makes no difference if his chemistry rights itself with his advancing years. And it certainly makes no difference, if he learns coping mechanisms and behavioral strategies that help him keep centered and grounded in the midst of any storm.

The damage is done. His face and his name are out in the open for all to see. He’s well and truly screwed.

But hey, at least his mom feels better, right?

What a strange feeling this is. I can only be thankful that my mother had no access to the blogosphere when I was a kid. If she had, she would have been all over it, broadcasting her woes and my ills to the world on every forum and blog and social media outlet she could get to. She did that sort of thing — old-school — as much as she could, with both me and my other problem sibling, with whomever she could, so long as they were willing to listen.

To this day, she hasn’t let go of the pain and humiliation and hurt which my ex-addict sibling brought to her and her otherwise perfect family. She continues to punish them with judgments and criticism and public humiliation, even decades after they had their last high. And she continues to treat me like I’m somehow deficient — to this day she still jumps a little whenever I make a sudden move, as though I’m still as unpredictable and volatile as I was when I was younger. It makes no difference that both of us kids have paid our dues and gotten our lives in order. It makes no difference that we are different. For her, we are just the same.

She remembers. She remembers what we did to her and her chance at perfection. And we will never live it down.

That recollection of what it’s like to have your mother broadcast your illness for her own sake… it’s only half the actual struggle with all this I’m having right now. The other half is with privacy, and the freedom to be anonymously imperfect in this increasingly invasive world. There’s a reason I don’t tell people who I am and where I live. There’s a reason that no one I know is aware that I keep this blog going. Because people just don’t get it. Unless you’ve been in this kind of situation, where your brain and your body and much of your life are all seemingly pitted against your will and best intentions, you cannot know how it is. But you can sure as hell judge. You can sure as hell condemn. And you can sure as hell make certain that your views are known — whether it be on Twitter, Facebook, blog comments, or some other online social medium. There’s just too much talk and not enough knowledge, too much criticism and not enough compassion.

And that is a battle I choose not to take on. Because it’s a losing one. A long and losing one, at that.

Now, being curious to see if there was any kind of response/backlash against the blogger who took issue with Pseudo-Adam Lanza’s mother, I checked back today. Sure enough, she got a ton of comments, apparently a lot of them were not that great. She followed up with a great post: Debriefing: On the Ethics and Implications of Outing a Child in the Media and she touched on many of the things I was thinking, myself. I hope you’ll read her piece – she says it all quite well.

In the end, like many people after the Sandy Hook Elementary massacre, I’m feeling quite raw and vulnerable, these days. But even moreso, as someone with a history of cognitive issues and anger issues and attentional issues that could easily be amplified and skewed by the scapegoating mob who are seeking to root out “bad influences” and “threats” from polite society. Behind every rock, there seems to lurk a demon. People are looking high and low, and you generally find what you look for. It’s truly bizarre, to feel that after so many years of working so hard to gain some semblance of normalcy, I should experience this sense of intense vulnerability — not as a victim, but as someone who might be targeted by the status quo, because of my past. Especially my childhood.

And it makes me reluctant to actually speak my mind and talk about what’s really going on “ïn here”. Someone might take it the wrong way, after all. And then what?

I know I’m indulging in some pretty far-ranging what-if’s… and yet…

Are people with mental illness going to be targeted by an uninformed and aching public? It’s quite possible.

Are people who have different cognitive capacities going to be singled out and marginalized by a world seeking desperately for ways to return to normalcy — a normalcy which never actually existed and we frankly will never “get back”? It wouldn’t surprise me if that happened.

Are people with known anger issues, who struggle with impulse control, who honestly and sincerely work towards keeping to stable ground and staying centered in the midst of chaos going to be seen as potential threats to those around them? I wouldn’t doubt it.

In the extremes, of course we have to be careful. We have to be wise and prudent and use our heads and not let the batshit crazy people loose their rage on the rest of us with tools of mass destruction. But there’s a whole lot of different kinds of crazy swirling around in many, many guises, and I for one wouldn’t care to be labelled by the maddening crowd and possibly targeted by those who “mean well” and are trying to protect their loved ones from threats they imagine are there.

Nor would I want my ills to be dragged out into the light of day without my consent or say-so, and marked as “a future Adam Lanza” — just because my mother needed to feel that she wasn’t quite so alone.

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 warrior’s walk

Over the past year or so, I have been giving a lot of thought to head injury survival through the ages. Getting hit on the head, knocked out, attacked, and generally brain-damaged is about as regular a part of the course of human history as, say, losing your teeth or having a part of your body chopped off.

Think about it — dental care as we know it today is a relatively recent development. Used to be, a blacksmith was the one with the tools to pull a tooth — or you did it yourself with a heavy object slammed against a bad molar, or a string (tied around the offending tooth) and a slammed door. And it’s easy to forget in this convenient age, that once upon a time, people used actual tools to get their work done — lots of them sharp — and lived under conditions that were harsh and unyielding. Chopping off part of a finger — or a whole finger, for that matter — losing part of your foot to frostbite, and/or having a piece of your ear bitten off in a bar fight, happened with a lot more frequency than we 21st century folks recall.

Think about it — once upon a time, wars weren’t fought in faraway lands by trained, dedicated armies that only wanted to vanquish each other. Time was, raiders and looters and rapists and pillagers roamed the seas and the countryside, doing as they pleased to whomever was there. What’s more, in the middle ages, just about the only way am ambitious young man who wasn’t the firstborn in his family could get ahead (other than by taking up a trade or currying favor with some overlord) was to sign on as a mercenary with a local feudal lord and maraud his way to fame and fortune.

In our cozy, warm homes, with only the television and the internet to connect us with a reality outside our own, it’s easy to forget just how rough life has usually been on the human race. And it’s easy to forget that traumatic brain injury is not something that is unique to football players, boxers, and survivors of car accidents and falls. We look at statistics about brain injury — how many of them come from sports and falls and accidents and assaults — and we shake our heads, wondering what we can do to make the world safer — both before and after the accidents.

But think about it for a moment… how safe can we reasonably expect life to be? Granted, nobody wants to have their brain rearranged by unexpected trauma. Nobody actively seeks out a cognitive-behavioral condition that can be not only disturbing but downright disabling. Nobody plans to be at a perpetual disadvantage in life. But it happens.

And it’s been happening for a long time.

So, what do we do?

Certainly, we can try to prevent as many head injuries as possible, with helmets and education and training and good sense. But there’s just no way to live your life freely, if you’re on constant alert about what might happen, and what that might mean for your long-term prospects.

As an old, old relative of mine says, “Life is dangerous!” To try to limit the dangers, also means trying to limit the full range of human experience. To live fully, you need — on some level, anyway — to accept the possibility of harm, damage, danger, injury. To live fully, you need to walk — head up, shoulders back — into the face of some pretty scary stuff, and be prepared to deal with the consequences.

To live fully, to walk fully upright in the world, you have to be a warrior.

maori warrior

Maori Warrior

You have to be ready, willing, and able to look the world in the eye with a resolve that says, “I will not bend before you, I will not break beneath you, I will not yield the ground I have won. I will not falter and I will not fail, until I have reached my final destination.  The only way I am going to fall short is if I fall permanently, period.”

To do this, to think this, to live this as a recovering survivor of brain injury (or many other kinds of injuries, including PTSD), you must be a warrior.

Now, I’m not saying everyone should pick up a sword or a spear or a gun and march out into life swinging and shooting. I’m not saying that you have to be on the defensive or the offensive at all times. Far from it. According to dictionary.com, a warrior is someone who is

1. a person engaged or experienced in war(fare)

2. a person who shows or has shown great vigor, courage, or aggressiveness

Vigor, courage, aggressiveness… yes. Those are key. And they are also predicated upon the experience of war.

To be a warrior, you have to realize and accept that you are engaged in war. Not only war in the classical sense, but:

War 4. active hostility or contention; conflict; contest

For those who struggle daily with TBI (or PTSD) in a world that doesn’t give a damn about our struggles, this is not a huge cognitive stretch. We are constantly faced with active hostility or contention, conflict, and contests — whether those come from within, or without. In my case, I would have to say the source is frequently more internal than it is external, but that doesn’t make it any less challenging. If anything, it makes it moreso.

Sometimes walking through the world without acting out, without attacking, without leaping in to “defend” yourself from a mis-judged situation takes more warriorship, than striking out. Being able to stand your ground… to hold your fire… to be fully present in a moment which threatens you on every level, without flinching or fleeing… that takes true strength, courage, and vigor. And mastering the self, learning to calm and/or disregard the constant chatter that goes on in our rewired brains… well, that takes a good deal of aggressiveness.

Not against the rest of the world (tho’ sometimes that’s required), but against the inner impulses which impel us to flinch and flee and fly off the handle. It takes monumental skill to stand when you want to bolt. It takes determination to listen, when you’re just dying to shout. And it takes all you can give, to walk, when everything in you is telling you to run.

Now, don’t get me wrong.  I’m not recommending that everyone just be 100% okay with the after effects of traumatic brain injury or other tragic traumas. I’m not saying we need to just sit back and take all the crap the world has to throw at us. Far from it. What I’m saying is that we as recovering survivors need to develop the inner resources to be our own people, to stand our own ground, hold true to our values, and not be diverted by externals when they keep us from our ultimate goals.

We need to be warriors in the truest sense. To walk our own paths, wherever they may lead us. To know ourselves for what we truly are, not what the rest of the world says we are. To do what must be done to protect ourselves and our lives and all we hold dear. And whatever route we take, it must be our own, and we must be loyal to the True inner voice that compels us, while learning to discern and dismiss the internal chatter and endless distractions which strive to pull us off our path.

Only we can achieve that. But when we do, we know it is our own. We have earned it, we have won it, we have paid dearly for it. And nothing and no one can take that from us.

March on.

Anger, anger, and more anger

temper strikeOne of the things that can make TBI particularly difficult, in the ensuing weeks, months, even years, is anger issues. Rage issues. Flying off the handle and attacking others for no good reason that they can see.

There are a lot of reasons this happens. Some of them are:

  • Fatigue – your system is compromised by too little sleep and/or too much activity (with me, the two go hand-in-hand), and you don’t have the energy/wherewithall to stop yourself from going off
  • Fear – there’s nothing like a sharp spike of adrenaline, combined with anxiety and fear to set you off. Fear has a way of clouding your judgment, so you not only under-think situations (from fatigue) but you also overreact to the circumstances (which may or may not be true).
  • Frustration – when you’re trying to get something done/said/understood, and it’s just not happening, no matter how hard you try, patience wears thin — especially with yourself. My frustration tends to be directed inwards, though it also gets directed outwards. But the inward-turning kind is actually a lot worse for me. It makes me mean and aggressive. The worse I feel about myself, the angrier I get with life in general, and the more I tend to blow up.

It certainly doesn’t help that my brain gets into an uproar and starts getting into a biochemical soup drama, so that even if I wanted to think straight, I can’t.  The constant restlessness of my brain, coupled with the toll that agitation and fatigue take, can combine for a pretty potent mix of explosives.

So, what can I do about it?

  • At a very minimum, be aware that I’m angry. It often feels like something completely different — it feels like I’m just revved, and I don’t recognize the emotional piece of it. It may sound simple, but realizing that I am actually angry is a big challenge for me.
  • Realize that my anger does not necessarily make sense to others. What I’m thinking and feeling may be entirely unique to me.
  • Realize that my brain may be sending me wrong signals, and the surge of emotion that’s coming up may be simply a biochemical response by a physical system that is WAY overloaded and highly sensitive.
  • Remember that the long-term effects of a blow-up are probably not worth the satisfaction I get from venting. No matter how justified I feel about my anger, it can do much more harm than good. I have to think about whether I want to spend the next days/weeks/months patching up the damage I do to myself and my relationships with others, thanks to uncontrolled anger.
  • Keep myself in check. No matter how justified I feel, the more revved I get, the more I need to step away. I need to do whatever I can to remove myself from that situation, before it escalates and turns really nasty.

It’s not a perfect process, but it’s something. It’s an ongoing thing, and I’m far from perfect. But ultimately, life has a way of teaching me the lessons I need to learn, so if I just keep at it, eventually I do make some progress.

Daily planning tools to keep on track

It’s no secret I’m really into regularly tracking my activities and progress. I find that the more I track my progress, and the closer tabs I keep on how I’m messing up (and what I can do about it), the better I function and the better I feel about myself.  You can read how I use the system at this post.

I’ve made a new version of the form I fill out each day, for others to use. You can download it here for free: Daily Planning and Results Log Book Blank (Word document format).

Log Book View

Log Book Page 1

Log Book Page 3

Log Book Page 4

This log lets you record what you have planned to do each day at a certain time, as well as what you actually did (I tend to “wander off” and not get things done, so I need to track what I actually did instead, so I can see what motivates me to take action throughout my day). It also has a few pages for “360 feedback” notes, which are all about what you did right during the day and why… as well as what you could have done better, why that was, and what you can do different next time.

It’s based in part on the Give Back materials, which include daily planners as well as head injured moment assessments. But it’s also modified based on what I’ve learned works well for me. Give Back tends to limit the number and kinds of explanations for why things turned out like they did. Their reason lists are also a bit of a jumble with not much organization. Plus, I find that having a whole big form to fill out to explain why I screwed up, causes me to spend more time thinking about stuff, than actually doing it — with me, it leads to “analysis paralysis” — but it might not be that way for everyone. Some people, I’m sure, really benefit from extended examination of their issues.

But I tend to get so busy during my days, that I just don’t have the time for extensive analysis of my head injured moments (even though I tend to have more than a few in the course of each day). I find it most effective to keep things simple and flexible, and focus on how I get through my day… and how I can do  better the next time, if I need to refine my approaches.

I’m also creating a version of this log that is book-length and spiral bound. It’s very simple and straightforward — just a bound copy of about a month’s worth of forms, to make it easier to keep organized. I’m presently creating it on Lulu.com and it will be available shortly for folks who want to buy a copy of the book that collects everything in one place.

I tend to keep all my forms clipped together in a stack, which isn’t the neatest way to do things. But that’s just me. I will probably order my own spiral bound copy, in any case, because the printing is going to be nicer than my own printer, and it won’t smear when I mark it all up with my highlighters. Also, having it all in one place — what a concept!

Just so you know, there the book-length workbook will cost money to buy. But there’s no obligation to purchase anything. Honestly, we pay enough as head injury survivors, in terms of daily difficulties. Why add to the burden? The  book-length version is just a neater and more orderly print alternative to the 4-page version (which is a free download).

For the download, you can grab the Word document and then print it out and fill it in by hand or you can put it on your computer and type in the information. Either way — whatever works best for you. I tend to handwrite all my notes, because I’m not always at a computer, and I don’t want my recovery to be dependent on technology. Plus, I like to color-code my info, so it’s easier to decipher later (that’s sometimes a challenge).

Oh, if you don’t have Microsoft Word on your computer, you can download a copy of OpenOffice (www.openoffice.org) for free — it has all the applications you find in MS Office — word, powerpoint, spreadsheet, even database. But it’s Free. As in — costs you no money at all.

Me? I’m big into free. So, if you want to use this log, and you need a word processing program that rocks, check out Open Office.

Well, must run – the day is waiting.

Anger Notes: From mountain to molehill

I had a little difficulty this morning, getting into the day. I go through the same routine every day — wake up slowly… give myself time to wake up enough to get out of the bed without tripping or falling… get up and brush my teeth… go downstairs to put water on for coffee… do my morning workout while I am waiting for my coffee water to boil… think about what I need to accomplish today while I am working out… finish my workout and make my coffee and cereal… and then get into my morning.

Most days, if I have had enough rest, the routine goes like clockwork. But I recently started lifting heavier weights, and I also had a chiro adjustment yesterday, so I’m a little sore and stiff, and I need to get more sleep. Under normal conditions, getting the 7 hours that I had last night would make me very, very happy. I actually slept through till the sun was coming up! And I would feel like enough. But I am still recovering from staying out all night on New Year’s Eve last week, and I need to get even more rest than usual, so I can get back to my regular sleep schedule and get over being stiff and sore from the increased weight and also the adjustment I got yesterday.

Now, for most people, being behind on their sleep and having a little stiffness and soreness in the morning is no big deal. For a lot of people, it’s actually a way of life. They don’t get totally thrown off by lack of sleep. They just muddle through the day somehow. They don’t get all tweaked and freaked out over every little thing, with hair-trigger temper outbursts over every little thing. They just go through their day, like it’s no big deal. And they live their lives like everything is relatively normal, popping Advil or Aleve or having a few drinks at the end of the day to chill out and sleeping in, in the morning.

The people who don’t have issues with sleep deprivation and pain clearly are neurologically intact. They probably have not sustained traumatic brain injuries. They probably don’t have post-concussive syndrome, and they probably haven’t sustained brain trauma/head injury.

I, on the other hand, am not in that “space.” When I am behind on my sleep, it introduces a whole host of issues that make the most basic activities into challenges. When I am in physical discomfort, I tend to push myself even more, perhaps because doing that relieves the discomfort for me. But pushing myself tires me out even more. And when I get over-tired, I have a hard time relaxing and going to sleep… which makes me even more tired in the morning. And then I have all sorts of cognitive-behavioral problems. It’s a vicious cycle that’s very difficult to break.

That’s that cycle that started with me last night. I should have gone to bed around 9:30, but then I had some stuff to do, and I needed to talk to my spouse, who was out at a late meeting till 9:30. By the time they got home, I was ready to go to bed, but the sleepy part of me didn’t want to go to bed, so I stayed up and talked with them about this-and-that.

Finally, they packed me off to bed, seeing that I was pretty much wedged into the couch, and I was making myself comfortable for a long stay-up. It was 10:30, by then, and it took a focused, concentrated, concerted effort on both our parts to get me up off the couch and upstairs to bed. Then — being as tired and as contrary as I was — I stood in front of the bathroom mirror and inspected myself, studying my double chin and looking for gray hairs and trying to make my hair stand up straight by tousseling it and trying to spike it straight out from my scalp. I know, it’s strange. But this is the kind of stuff I do when I’m really, really tired and I don’t want to go to bed.

After about 15-20 minutes of this… and deciding that yes, I am still a handsome individual with good bone structure and not to much saggy skin in the wrong places… I finally got my ass in bed. Then I remembered I needed to stretch and take Advil (my bedtime routine), so I can better relax. I did that, and I then did my progressive relaxation exercises to get myself to sleep, which went really well — even better than I expected. I got to sleep around 11 p.m.

Happily, I slept through till 6 a.m., which is a wonder, because I’ve been waking up around 4-4:30 or so — which sucks — and that felt pretty good. I gave myself some time to wake up, before I got out of the bed. If I roll out of bed right away, I tend to stagger around a lot, which is loud and also a little dangerous. There are plenty of hard surfaces and sharp corners I can hit my head on. Plus, my spouse doesn’t like to be woken up by my clunking around, bumping into stuff — which happens, when I get up too quickly.

I got myself up and started getting into the day. But man, I was clumsy this morning, right from the start. I had trouble holding my toothbrush, had trouble holding onto the water spigot, and it was really really getting to me. I am definitely foggier and more out of it this morning than I’ve been in a while. It’s probably due to the adjustment I had yesterday — the chiro went pretty deep.  And when I’m foggy and clumsy and out of it, I get really, really agitated. Every little thing gets to me, and I have a harder time with those spikes of anger that come up when things go wrong for me. They seem to come out of nowhere, and when they show up, they can be intense — and the intensity makes them even more confusing and frustrating (and damaging) because my mind knows that my reaction to what is happening is wildly out of proportion to what is going on, and I feel like something is terribly wrong with me, that I feel this way. And I start in with calling myself all sorts of names, telling myself I’m a damaged idiot loser who can’t keep their shit together, etc. etc. ad nauseum.

I’ve written about this temper flare stuff before in my posts Flash in the (brain) pan and A constant restlessness (and elsewhere), and it still holds as true as ever.  And this morning, when I was just trying to brush my friggin’ teeth, already,  I could not seem to keep my act together. I had trouble holding the toothbrush, and when I put it down on its rest, something about how it was positioned bothered me intensely. Then I tried to turn off the water, and my hand slipped, and I hit the side of my hand on the edge of the spigot, which hurt.

And that old temper flare jumped out again, like Old Faithful… that geyser that comes up regularly at Yellowstone. Or maybe a better analogy would be, like one of the geysers that erupts periodically without warning. Tori Amos has an album I love called “Little Earthquakes”. Maybe I’ll do an album called “Little Geysers.”

Anyway, for a few minutes, as I stood there nursing my aching hand, I was

absolutely furious!!!!

It was all I could do to keep myself from hitting something or slamming something down. I was angry with the spigot for having hard edges. I was angry with my hand for being so weak that a little bump would hurt so much. I was angry with myself for being so uncoordinated and not being able to simply turn off the water like a normal person would. But most of all, I was angry with myself for getting so bent out of shape over something so simple. “I know better,” I told myself. “Why can’t I act better?

I was really getting whacked-out over this, and it literally threatened to derail my morning. When I get going like this, I descend down into a pit of ugliness, and the whole day can be tainted by my temper outbursts, whether they are internal or external. In fact, sometimes the worst ones are internal, that no one but me sees or hears or knows about, which makes my crabby, short-tempered behavior all the more confusing for people around me. It makes no sense to them — how could it? They don’t know what I’m experiencing, and I’m doing everything in my power to shield them from that.

I could feel that rush of anger, that temper flare, that wild spike of emotion… it tore through me like one of those microbursts I’ve seen on the Weather Channel… and I was starting to get freaked out… and go into one of those wild rages that’s like a forest fire tearing through my head.

Then I checked myself. Something in me — the something that has been observing myself with increasing knowledge of TBI over the past few years — told me to take a break and just give myself time to catch up with myself.

So, I stopped and took a breath and thought about what was happening. And when I took a break from my downward slide, I realized:

  1. I am still tired. I did not get enough sleep, and I am groggy.
  2. When I am groggy, my neuropsych has told me that I am more prone to agitation.
  3. When I am groggy, I also can be uncoordinated. I don’t need a trained expert to tell me this. I have observed it countless times.
  4. When I am uncoordinated, I tend to bump into things.
  5. When I am groggy, I tend to propel myself through events on adrenalin — because I need an extra “pump” of energy — energy I  don’t have from regular sources (like getting enough rest). When I’m fatigued, I have to pump myself up just to do the basic stuff… because otherwise I can’t get going.
  6. When I pump myself up, I move faster.
  7. When I move faster, and I am uncoordinated, I hit things with greater force than I would, if I were rested and had full motor control.
  8. When I’m fatigued, my brain’s constant restlessness and agitation is worse, it makes me snappier and more extreme in my reactions. I am also more physically sensitive, and I feel everything more intensely.
  9. And finally, I remembered — from what I’ve read and what I’ve been told by my neuropsych — this type of reaction from me is actually quite typical of TBI survivors. It’s just what my brain does, when it has to operate on too little sleep/energy.

So, there it was –this drama I was experiencing, standing in front of the bathroom sink, freaking out over hitting my hand on the spigot had everything to do with my brain/body AND it had NOTHING TO DO WITH ME.  It wasn’t me being an asshole loser who’s emotionally inept and a worthless use of space. It was just my brain and body doing what they did, when I am tired and out of it and I am moving too fast.

I did NOT need to make a big deal out of it — just recognize what was happening… And I also realized that it was actually my brain sending me warning signals about what was amiss in my day, thus far. I recognized that this little snap of mine was like a gift from the gods — a hint about where I was at, that day, which I could use to inform the rest of my day to make better choices.

I also realized that if I didn’t take steps to stop this flash in my brain-pan, I was going to start the day on a really BAD note. Temper flares with TBI survivors tend to be quick-on, quick-off affairs, instantaneously coming up out of nowhere and disappearing just as instantaneously for no apparent reason. I realized I just needed to occupy my attention long enough for my system to calm down, and then I could get on with my day.

So, I took action. I kicked into gear and did something with all that agitation and energy — I channeled it into a constructive activity. I looked at the spigot that I’d hit my hand on, and I realized that it was slippery with soap on the handle. I studied the handle and felt where the slippery soap was, then I ran the water and rinsed off the handle, until it wasn’t slippery anymore. That made me feel a lot better. Then I dried my hands and went downstairs to make my breakfast.

Again, I had more trouble with uncoordinated blunders downstairs. I was off-balance and I was clumsy, getting my coffee stuff together. But I remembered what I’d noticed upstairs — I’m tired. I’m uncoordinated. This is not about me, it’s about my brain and body. When I am this tired, it’s perfectly normal — for me — to be agitated and restless and make mountains out of molehills. But it has nothing to do with me and my character… Forget about the supposed stupidity and ineptness and all those other words I use to attack myself. It’s about my slightly broken brain which has trouble when it’s tired, and I know what I can do to make it better — take it easy, take things slow, don’t push myself like crazy, and cut myself a friggin’ break, already.

So, that’s what I did. And by the time I got done with my workout, my day had re-booted nice and fresh. I’m still tired, but I’m not wiped out like I could be, because I made changes to how I was doing things. I had a good solid workout, and I lifted shorter sets with fewer reps, because I realized my body needed to catch up with the heavier weights. I also focused more on my exercise — I had been letting my mind wander more, over the past week or so — and I didn’t lose track of where I was with my workout, like I had been, in the past few days. And as I was planning my day, I made a point of scheduling just a fraction of the number of activities I’m prone to schedule for my day, which takes the pressure off, right off the bat.

AND instead of checking email from friends first thing in the morning, as I’ve been doing for the past few weeks, I am waiting till later in the day to do that, because there is a lot I need to get done, and I cannot be distracted from the work that’s waiting for me to finish it.

All in all, even though the day started out on a rough note, it was for the best.

Because I stopped and thought about what was happening. I learned about the experience as it was happening. And I used my tools. I used the info I got from my neuropsych, and I used the knowledge I had of myself. I used the opportunity to stop and think to really appreciate what was going on with me. I cut my brain and body a break.

I am also planning to lie down for a nap later today. I’m working remotely, plus the weather is not good right now. I can get a lot done, if I focus on what I’m doing. And with the appreciation of how tired I am, I can make the extra effort to take care of myself, take my time at what I’m doing, and manage my energy with intention and discipline.

All because I stopped for a moment and thought about what was really going on with me.

This is progress.

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’m sorry… I think?

I’ve been thinking a lot about my reaction to the post about the BIA booting a blogger from their conference. And I’m wondering if I should regret my hot-headed reaction.

On the one hand, I have received tremendous help from the BIA in some respect. On the other, I have heard stories like this — and other accounts, where people were actively discouraged by the BIA from saying that you can recover from traumatic brain injury.

It’s a mixed bag. As most things with people are.

The thing is, though, the Brain Injury Association is more than a person. It’s a collection of persons which professes to assist other persons. And as such, if it’s going to truly assist, I would think they would welcome the presence not only of a member of the press but also someone who has been impacted by brain injury.

Or maybe they’re wary of brain-injured folks in general, knowing what they do about “us”…?

Who can say? One of the things I’m taking away from this is yet another reminder of how hot I can get on short notice. And it warns me to check myself periodically, to make sure I don’t go off the deep end. It reminds me I’ve had multiple concussions, multiple mild traumatic brain injures… and as such, I owe it to myself and to others to measure my responses carefully, and weigh the possible effects/consequences, before I let fly.

I had considered taking down the post from before, but it’s a valuable learning/teaching lesson. So, I’ll leave it up there, warts and all.