Keeping safe, keeping sound, keeping rested

stick figures in different positions of falling over, standing upOne of the major long-term issues I have, thanks to all those mTBIs, is that I tend to get tired… but I don’t realize it, until I’m so tired I can’t rest enough to catch up. When I’m tired, my thinking is off — as in off. I get more impulsive, and I also get angry quickly. It kicks off a self-fulfilling prophecy of lots of activity, followed by increasing fatigue, followed by lots of activity (to pump myself up with adrenaline), leading to increasing fatigue…

And before I know it, I’m so tired, I can’t rest.

I’m tired. I’m wired. And I’m unbelievably impulsive. As in – reserve a new domain name and launch a new online business impulsive. As in – push myself to make poor choices that pump me full of adrenaline that make me feel like myself again, even though I’m putting myself in danger. These choices can range from driving while exhausted, to starting a  new thing before I finish something else, picking a fight with someone over something stupid, or staying up even later to watch a movie I’ve seen a hundred times before.

Of course, the whole “new thing” crashes before long, because I run out of steam, I implode, or I rapidly lose track of what I’m doing. And after I get a nap or a couple of good nights’ sleep, I realize what I’ve been doing – and I know for sure, it’s never going to work.

That happened to me, last weekend. I had a lot going on. Too much, as it turns out. And I was tired. I was tweaked about things going on at work, and I was feeling the burn of the long winter and a lack of sunlight. So, I pushed myself. And pushed myself. And I ended up frittering away a lot of time over the weekend on things that I didn’t need to be doing — that I shouldn’t have been doing. And I tired myself out, even more.

I didn’t exercise as much as I should have. Because I was tired.

I didn’t finish the things I’d started earlier in the week. Because I was tired.

And I ended up eating a lot of junk food to keep my energy up… and also due to an impending migraine. I get ravenous when a migraine is brewing. And I ate a bunch of stuff that put on some pounds, made me feel worse, and screwed up my energy… so I was more inclined to eat more junk food, stay up later, and basically waste my week.

I don’t have weeks to waste. Only in the past several years, have I even felt like a real human being, thanks to my TBI rehab. I’ve lived for decades in the shadows, not feeling even remotely real. I’ve struggled to keep up, year after year after year, and I’ve never had the kind of connection with my work that I have now. I can’t afford to waste any time in my life, because I only have this one. And I’ve been wanting to do so much, for so long, only to be blocked and thwarted at every turn… I can’t waste any time, now.

So, all that being said, it’s incredibly critical that I keep myself in line and properly manage my energy, my eating, my exercise.  And always keep in mind the fact that, just a few years ago, I wasn’t able to maintain this level of activity, let alone have a realistic expectation that I’d be able to live up to my plans and dreams. It was all just “throwing stuff at the wall to see what sticks”.

Now, though, things are very different. Indeed, they are. And I have to keep that in mind, when I’m tempted to fritter away time on things that have no ultimate purpose.

It’s good to take a break, every now and then, but it’s important to stay on track and follow through. I can finally – finally – do that.

And I don’t want to take it for granted.

Onward.

A little here, a little there, and all the while paying close attention

All those details bring the brain to life

We think too much in our daily lives. Most of us, anyway.

We read too much news that has nothing to do with us personally, and about which we can do nothing. Nothing at all.

We spend a lot of time and energy, packing our days full of activity and “achievement” and all the while we are getting farther and farther from the very things that give us satisfaction and a sense of meaning and purpose.

We move too fast, thinking that will get us more to think about and enjoy and experience.

I’m seeing that with my parents, who are on a hell-bent all-out rush to do everything they can pack into their lives — apparently wanting to get everything accomplished before they die. They’re not getting any younger, and they seem keenly aware of that. It’s almost impossible to pin them down, these days. They pick up and go at a moment’s notice  — camping, traveling, hiking, doing, doing, doing, doing….

The tyranny of a life devoted to checking off all the items on your “bucket list” is cruel and sadistic. You race and race and rush and rush, doing everything, seeing nothing, experiencing nothing, just having a completed checklist at the end.

But the simple fact of my own life is that doing less and digging in more, is far more satisfactory than packing in all kinds of hyperactive pastimes that produce far more fatigue than awareness. I’d rather stand still in one place, examining the toad that has taken up residence near my back door bug light, feeling the sun on my skin and the wind at my back, and even the mosquitoes flying around my ears… than race from Point A to Point B at top speed, just for the sake of getting there.

I’m really in no hurry.

Maybe it’s because I’m not afraid. I’m not afraid to lose, I’m not afraid to die. I’m not afraid. So, I’m in no rush.

Not today, anyway.

This, of course, is a huge change from where I was 10 years ago. Even 5 years ago. Even 5 months ago. It’s where I am right now. There’s no guarantee I won’t be wracked by fear in another 5 hours, but right here, right now, I’m pretty chill, with my feet firmly planted on the ground, and no — I mean no — fear of the unknown.

And I’m taking my time today, just soaking it all in. It’s good for my brain. It’s good for my life. Stopping to really zero in on what’s around me, having a really in-depth experience with it all… that’s the ticket.

I’m doing some reading, some writing, some work around the house and the yard. I’m moving through my days, just letting them all sink in, and enjoying them for what they are. I’ve been thinking hard about my life up to this point, and I’m feeling pretty damn’ good about how far I’ve come. Especially since my TBI in 2004. My ten-year anniversary is coming up… and I’m starting to get reflective, pensive… and extremely grateful for the recovery I’ve been blessed to experience.

It’s funny… the other day, I bumped my head as I was getting in my car. Ouch. I’ve had a little bit of a headache since, but I haven’t lost it over the whole thing. I’ve had bumps and falls, over the past few years, and they freaked me out a bit. But this time, I’ve been pretty chilled out about it. I have a sore spot on my head and a little bit of a headache, but other than that, I have no other symptoms.

I’m still paying close attention to what’s going on with me, because I don’t want to have any complications building on my past TBIs, and I don’t want to let a potential concussion go unattended. It’s all too easy to let things slide, and then end up worse off over the long term.

However, based on what I’ve experienced so far — no detectable cognitive or motor issues, no fogginess or other ill-effects — I seem to be fine.

Speaking of fine, it’s time for me to get out in this day. I have another day off work, which is fantastic. And I have a few hours before I need to head into the city to do some errands. Life is good. And it’s worth spending the extra time to pay close attention to the details.

Getting lots done is all very well and good. But in the end, I’d rather be able to remember and appreciate what I’ve experienced along the way.

Onward.

I finished reading a book

Here’s a blast from the past. About a year ago, I wrote this post (but forgot to publish it), absolutely giddy about having finished reading a book. Looking at where I’m at now, it’s pretty amazing the changes I’ve been through. After not having been able to get through an entire book in years (although one of my favorite pastimes was always reading), last November, I actually finished reading a book.

Here’s the post:

November, 2009

Yesterday afternoon at about 3:30 p.m., I finished reading Aging with Grace, the book about the Nun Study of those long-lived School Sisters of Notre Dame, which explores how and why some people live long and never succumb to Alzheimer’s or dementia, and why others may be more vulnerable. This book has a lot of meaning to me, because as a multiple TBI survivor, I’m statistically more vulnerable to dementia, and about the last thing I want, is to be incapacitated and demented later in life. No thanks…

I found a number of tips and clues about what you can do to avoid dementia — even if you do have some brain degeneration — and I read reports of nuns who had all the signs of advanced Alzheimer’s, but no symptoms whatsoever before they died. Sounds good to me.

I’m invigorated by this new information. I highly recommend it to anyone. And I’m even more invigorated by the fact that I actually finished the book! It took me a month to read all 219 pages, but I did it!!!

This would not be big news for most people I know. Most people I know read books as a matter of course, and when they start a book, they generally finish it (unless it’s truly awful and/or they run out of time). I, on the other hand, have not finished reading a book I started in a number of years. It’s hard for me to remember the last time I actually reached the last page of a book I started.

Let me walk around my study, looking for a book I know I’ve read cover to cover… Let’s see… I am reasonably certain I’ve read about 56 of the books in my study, which constitute maybe 10% of the total on my bookshelves. And the  most recent one I finished prior to Aging with Grace was consumed in a hurry back in 2006. I may have read something from cover to cover in 2007, but I cannot recall.

Now, mind you, I have tons of books, but most of them I’ve only read the first couple of chapters, if that. It’s a lifelong habit that goes way back to when I was a kid, and I never even really realized it was a problem, until this past year or so, when I started to take a long, hard look at my reading habits — or lack thereof — in the context of my TBIs.

It’s a complicated issue — part difficulty with the material, part difficulty with keeping focused on the material. I can be really distractable, so I often end up wandering off on cognitive tangents, when I’m reading. But part of what feeds my distractability, I think, is the fatigue that sets in after I’ve been reading for a while, as well as the discouragement I feel when I realize my eyes have been skimming pages for the last half hour, and I cannot remember what I just read. It’s complicated. And it sucks. And it never occurred to me before that I might have difficulty reading. I’m such an avid infovore — I’m usually reading something. Who would guess that reading is such a challenge for me?

It’s taken some adjusting to get used to this fact. And the adjustment has been as much of a hit to my self-image as anything else. I was always known as a bookworm. Much of my knowledge comes from books. If I’ve been reading at substandard level all these years without knowing it… and also not grasping a lot of what I was reading… what does that say about me, as a person? Does it completely invalidate many of the beliefs and assertions I’ve had about myself, for over 4 decades? It’s troubling to think so.

But now that I know reading is a problem for me, I can take steps to do something about it.  And that’s good. I literally cannot live this way, not being able to read a book from cover to cover. I am NOT going to continue in life this way. Something must be done. I need a plan. Here’s my plan — which so far has worked well, the first time through.

I need to acclimate myself to reading for longer periods of time, by reading for fun and pleasure, getting up to speed with that, and then starting to read for learning and understanding. I need to practice regularly and build up my stamina, and also develop different strategies for how to handle the material I absorb.

First, for the fun reading, I need to identify a topic that interests me which will stimulate me. I need to have some investment in the material, some payoff, some reward that comes with it. Preferably, I need to find something to read that also has “companion” material, like a movie that was made of it. I need to have the information presented in different formats, that different parts of my brain can “hook into”.

I chose The Bourne Identity, because it’s an action adventure novel that’s broken into relatively short chapters. It’s also got a movie made of it that is one of my favorites, and I have visuals of the action to prompt me as I read along

Second, I need to set aside time to read. I have to have time to do it, when I have time to rest either before or afterwards, or both.

I do this on the weekends. I take naps on the weekends to catch up with my rest. And I read during the afternoons.

Third, I need to gradually increase the amount of time I spend reading. I pay attention to how much time I’m spending, how I’m feeling, how my pace is. And I really congratulate myself, when I’ve read more than 10 pages at a sitting and understood what was being said the whole way through.

I can do this, but I also need to make sure I’m not tiring myself out. I need to make special efforts to reward and praise myself for having read as long as I have. I tend to get down on myself and think I’m stupid, when I’m not reading well, and I assume that it should be easy for me. But my reading has never been as strong as I always thought, and since my fall in 2004, it’s got even worse.

Fourth, I will then transfer my stamina and interest and good experiences with action/adventure fiction to my other non-fiction reading. And I must pace myself, gradually working my way up, again, and re-reading the things that I didn’t get the first time around. I need to keep an action/adventure book on hand, to keep my interest bolstered. I don’t worry so much about finishing the fiction in a timely manner. It’s more for the sake of keeping my spirits up and having a good experience while reading, so I can focus my more intent energies on the non-fiction/professional reading.

This is what I’ve been doing, on and off, with Aging With Grace over the past month. And now that I’ve done it and see that it works(!) I am ready to move on to my professional reading.

This is such important work. My survival and success depends on it. I’ve got a bunch of books I bought in the past that I need to read for work, but I haven’t been able to crack them. Now, I’ve got to do it.  Now I have a strategy and a plan, and I’ve proved (at least once) that it works. Reading really is fundamental. And the fact that I have done it with Aging With Grace has really lit a fire under me.

But before I go any further, it’s time for my Sunday afternoon nap.

Not crazy, not bad, not stupid. Just brain injured.

I’m checking my stats today — “head injury and now i hate myself” came up 8 times in the past week.

And I’m sure the person(s) who were searching on that were/are not alone.

Lots of us feel this way — head injury and now i hate myself.  Our brains don’t work the way they used to, and so much of what we have come to understand about ourselves, which is directly related to us functioning in a certain way and being able to predict and manage our own behavior, and generally control our lives… well, a lot of that goes away.

Can it come back? I am of two minds on this point.

On the one hand, my understanding is that once fragile connections in the brain are severed, they don’t get put back together again. So, the autopilot methods for living our lives we have developed over a lifetime are fried. Shot. Gone baby gone.

BUT that does not mean that we cannot develop other pathways that help us accomplish the same results — just in a different fashion. Just because the well-worn paths through the jungles of our lives are blocked by fallen trees, doesn’t mean we can’t blaze a new path (or two or three or more) and still reach our destination.  Grab that machete!

It may take time and tons of deliberate effort — not to mention a whole lot more patience and perseverance than we’re inclined to devote to the effort. All those vines and shrubs and trees in the way… And all those snakes and howling monkeys… But it can happen. A new trail can emerge over time. I’m not saying that it will, 100% guaranteed. But it can. And it might.

A lot of it is up to us, and how we choose to approach our lives. It can depend on how determined we are to fix this sh*t. It can depend on how much we have to lose. It can depend on how much we hold others responsible for our difficulties. And how much ability we perceive in ourselves. It can depend on how motivated we are, and how we end up feeling after each of our attempts — failed or successful, or a work in constant progress.

Of course, there will always be things out of our control. And given the  nature of this type of injury, in some cases there’s literally only so much you can do, at any given point in time. But here’s the thing, see — how much we can do will necessarily change over time. We change. We grow. We improve. We fall back. But we never truly stay the same.

So, it’s important to not give up and not paint yourself into a corner, and block yourself off from the rest of the world, telling yourself — over and over and over and over — that you’re brain-injured, and that means you can’t have any of the things you want in your life. It’s tempting, I know. I’ve done it myself, plenty of times. But why decide you’re crippled, when you’re just re-learning to walk?

You didn’t give up learning to walk when you were a year or two old, and you kept falling down. So why start now?

Look — You might not be able to have it all, but then, who can? Brain injuries can have a way of making us a lot more inclined to over-estimate and over-reach and over-react, than we would normally. It’s important to remember that, and not derail yourself over your perceptions of success and failure and what constitutes a “good life”.

And it’s important to not get hung up on externals, when it comes to how you feel about your life.  Seriously. In my situation, I am living so close to the edge, I can smell the sulphur of hellfire and brimstone from here. I’m literally a paycheck away from disaster, and I’m not in a permanent job, which makes my situation all the more precarious. And I’m the breadwinner for my family. But you know what? That situation can change. And it can change for the better. And anyway, I have to block out the chatter in my head about “You’re going down! You are so screwed! Who would want to hire you full-time, you loser?! You’re going to lose everything you worked so hard for! You’re brain-injured, and that last fall is going to do you in, big-time!”  and stay steady, no matter what. Keep my head on straight, and not let thing like a temper flare or a forgotten appointment throw me for a huge loop.

I just have to stay steady. Keep that chatter in my head down to a minimum. And do things regularly that feed me and make me feel whole and human again. Like work out each morning and wake my body and brain up. Like spend as much time as I can outside. Like connect as best I can with the people around me who are connected with me, and who can help me live my life better.

My head will tell me any old crap it feels like spouting, at the moment. And it’s usually not helpful. So, I have to use my mind, my past experience, and dedication to the kind of life I want to feel, to block out that mess. And just get on with living my life. Stay steady. Keep the faith. I have to remind myself — I’m not crazy, not bad, not stupid. I’m just brain injured. And injuries either heal, or we learn to live with them. We might limp a little bit, or we might need to use a walker or wheelchair. But if we want to get from Point A to Point B badly enough, we can find a way.

I figure, if Martin Sheen can sustain a heart attack while filming Apocalypse Now and struggle 1/4 a mile to the road to get help, and then come back to filming six weeks later… and go on to have the kind of career he’s had, I can figure out a way to keep my act together.

Really, for me, it’s about keeping the faith any way that I can — remembering that I’m contending with an injury that never quits, and keeping myself strong in the face of it. I can choose to beat myself up, sure. But I’d rather relax, regroup, and just get on with my life.

There is as much hope as you care to hold

I suppose it’s inevitable, whenever a serious issue comes to light and gets more and more press — head injuries. Concussions in football. Pro sports injuries.

Media coverage. Reportage. Special reports. Studies  presented.

It’s good to see that folks are starting to take head injuries more seriously. Especially in sports. It’s good to see it making the news.

The pictures of broken brains help — slideshows of post-concussive gray and white matter — but they may also hurt.

Because what the pictures do not — cannot — show you, is the person the brain belongs to. They do not show the heart. They do not show the spirit. They may show tangles of tau and a ton of subconcussive damage, but they don’t reveal the character, the personality, the grit of the person attached to the brain. And they say nothing about what their life was really like — good, bad or otherwise.

And I think about what people must be thinking, when they look at the pictures and they wonder about their kids or their teammates or their other loved-ones who have gotten hit on the head a lot of times.  I wonder if they are tempted to just throw up their hands and say, “Well, that’s it then. It’s curtains for you…” and turn away from watching the “inevitable” downward demented slide of someone who’s got a lot of head trauma in their history.

When it comes to dealing with traumatic brain injury, concussions, head trauma, TBI, whatever you want to call it, the one thing I think keeps people at bay and keeps them from really studying it and learning to understand it is fear. Fear of what TBI means. Fear of what it may mean. Fear of what it might do to the person who’s experienced it. Fear of what it might turn them into.

Fear.

And ignorance. Because not ever knowing that there are an infinite number of possible outcomes — good, bad, and otherwise — for a concussion, TBI, head trauma, brain injury, or whatever else you want to call it… well, that’s pretty scary.

And that ignorance is pretty common. Even among doctors. And therapists.

I think if we could all realize that TBI is not the end of the world, and there is always a chance that things will turn out different from how the experts say they will, we could do a better job of approaching TBI, learning about it, and dealing constructively with it… perhaps even reversing the long-term effects. I think we could do a better job of educating athletes about it, as well as their parents and coaches and loved-ones. I think we could do a better job of rehabilitating survivors, and returning them to full citizenship… without them having to do it all alone.

Doing it alone is a lonely, lonely business. I know this from experience. But having someone to help you through… well, that makes it actually bearable.

We need more people to help us through.

We all do, really.

And we need: Knowledge. Information. Trust. Courage.

We need Hope.

The good news is, there’s more than enough of all of the above to go around — if we make a point of pursuing them.

It can be done.

Is playing safe? Is it safe to return to play?

Recently, someone posted about the Maher mouth guard being effective protection against TBI in sports. I don’t know enough about it to speak with any authority, but on the other side, there’s the impact of low-level hits to consider. I believe I’ve posted about this before, but it bears repeating:

When we think about football, we worry about the dangers posed by the heat and the fury of competition. Yet the HITS data suggest that practice—the routine part of the sport—can be as dangerous as the games themselves. We also tend to focus on the dramatic helmet-to-helmet hits that signal an aggressive and reckless style of play. Those kinds of hits can be policed. But what sidelined the U.N.C. player, the first time around, was an accidental and seemingly innocuous elbow, and none of the blows he suffered that day would have been flagged by a referee as illegal. Most important, though, is what Guskiewicz found when he reviewed all the data for the lineman on that first day in training camp. He didn’t just suffer those four big blows. He was hit in the head thirty-one times that day. What seems to have caused his concussion, in other words, was his cumulative exposure. And why was the second concussion—in the game at Utah—so much more serious than the first? It’s not because that hit to the side of the head was especially dramatic; it was that it came after the 76-g blow in warmup, which, in turn, followed the concussion in August, which was itself the consequence of the thirty prior hits that day, and the hits the day before that, and the day before that, and on and on, perhaps back to his high-school playing days.

This is a crucial point. Much of the attention in the football world, in the past few years, has been on concussions—on diagnosing, managing, and preventing them—and on figuring out how many concussions a player can have before he should call it quits. But a football player’s real issue isn’t simply with repetitive concussive trauma. It is, as the concussion specialist Robert Cantu argues, with repetitive subconcussive trauma. It’s not just the handful of big hits that matter. It’s lots of little hits, too.

That’s why, Cantu says, so many of the ex-players who have been given a diagnosis of C.T.E. were linemen: line play lends itself to lots of little hits. The HITS data suggest that, in an average football season, a lineman could get struck in the head a thousand times, which means that a ten-year N.F.L. veteran, when you bring in his college and high-school playing days, could well have been hit in the head eighteen thousand times: that’s thousands of jarring blows that shake the brain from front to back and side to side, stretching and weakening and tearing the connections among nerve cells, and making the brain increasingly vulnerable to long-term damage. People with C.T.E., Cantu says, “aren’t necessarily people with a high, recognized concussion history. But they are individuals who collided heads on every play—repetitively doing this, year after year, under levels that were tolerable for them to continue to play.”

Speaking from experience, I don’t see how it’s possible to discourage kids who live, breathe, eat, sleep contact sports to give them up — even if it means they add years to their lives and they avoid the dementia and cognitive problems that can appear over the long term.

I, myself, have apparently had enough concussions in my life to make my brain increasingly vulnerable to damage. The fall I had in 2004 almost cost me everything, and it was totally a fluke — or divine intervention — that spared me and my family from complete ruin.

Parents and coaches and spectators alike should give the impact of repeated subconcussive impacts a good deal of thought, and weigh the immediate benefits versus the potential long-term costs to the next generation.

Just my two cents… on top of Malcom Gladwell’s amazing piece.

Okay, FINE, I’ll self-assess!

Well, the long weekend is almost over, and I’ve been spending the past few hours logging my experiences from last week, so I can share them with my neuropsych this coming week.

I keep daily logs of the things I plan to do, and I also track my successes/failures when all is said and done. Being the busy (compulsive?) individual that I am, I usually have a full page, each day. I use color highlighters to mark the things I get right and the things I don’t. Green means success, pink (which I hate) means failure because of my cognitive-behavioral/physical issues, and orange means something got in the way or I didn’t complete things for a benign reason (like I ran out of time).

I also have a log in my computer (aren’t spreadsheets wonderful?) where I list the things I’ve planned to do, and how they turned out, and what the reasons for my successes/failures were. I have been typing in my last few days’ worth of experiences, and as usual it’s a real eye-opener.

I tend to get very caught up in the moment… lose track of things I was working on a few hours or a few days before hand. I am very present-oriented, as well as future-oriented. I guess enough unpleasant, confusing mess-ups have happened in my recent and distant past, that I just got in the habit of not paying any more mind to experiences, once they’re over.

That’s fine, if I don’t care to ever learn from my past… but these days, I’m feeling more and more like I really need to pay attention to my lessons, get what I can out of them, and make a lot of effort to incorporate them into my life.

So, I’ve been logging my experiences into my computer log, so I can take them with me and discuss them with my neuropsych this coming week. It’s funny — they have been so supportive and encouraging and impressed wtih my progress… I’ve kind of gotten the impression that they don’t fully appreciate the range of my difficulties and how they get in my way.

Good heavens, but I keep busy! Good grief, should I say… My hands are tired from doing three pages’ worth, and my head is spinning with what I’m seeing. Basically, the pattern that’s emerging is me jumping around from thing to thing, not completing some important tasks, and running off to do side projects for no other reason than that I can.

On the other hand, I have made some really substantial progres, here and there. But I haven’t taken the time to really sit with it and appreciate it. Things like me getting my 2010 priorities in order… cleaning my study at last… doing my daily exercise… and taking really good care of my house… These are very important things I’ve accomplished in the past week, and I need to pay attention to them. I need to give myself some props.

I also need to give myself a good swift kick in the rear, because there are a lot of things I’ve let slide. It’s not enough for me to make a list in the morning, check some things off, and then not pay any more attention to it, after 2 p.m., which is my pattern. I really need to stay on top of myself, or I’m going to get hopelessly swamped in partially-finished projects. And I’m also running the real risk of taking on too much — yet again — which can spell disaster when it all comes to a head, and the non-essential things are crowding out the essential ones.

I must admit, I hate to self-assess. It’s difficult and painful and awkward and it reminds me of all the problems I have.

But it’s a new year, and I really have no choice but to change my dissipating ways. I need to rein myself in and buckle down to get done what I need to get done — what I’ve promised my boss I’d get done.

I expect to feel like crap for another day or so. I always feel terrible about myself and my life, when I start self-assessing. It’s so uncomfortable for me to see all the things that are amiss in my life… all the things that need fixing. But what’s the alternative? Leave them alone, and leave myself to rot? Don’t think so.

I can do better than that.

And so I shall.

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.

Solutions-Oriented TBI Recovery

I’ve been having a pretty good month, so far. Actually, the goodness goes  back to late November, when I planned and completed a very successful Thanksgiving. It wasn’t successful in the “worldly” sense — it was successful interpersonally and individually. I managed to make it through the holiday without a meltdown, without a breakdown, without total loss of all control, and with a presence with those I was with that I cannot remember ever having had at that time of year.

Now the next spate of holiday activity is coming up. Two families in several states await the pilgrimage of my spouse and myself. It’s going to be even more rigorous than Thanksgiving. Twice as much driving, four times as many families, probably about 20 times as much activity. And this, over the Christmas “break” when everyone will probably be on the road.

I’m being smart about it, planning ahead, pacing myself… Not taking on too, too much at work, but managing (sometimes just barely) to keep up with my workload. Just thinking about it all makes me flush with excitement/dread. But that’s the nature of the game we play at the company where I work, so if I don’t like it, it’s my own danged fault for staying in it… or it’s up to me to change it.

I’ve  been having some pretty amazing revelations, too, with regard to my recovery. I’m reading again, which is a miracle in itself. I’m also able to sleep 8 hours at a stretch, now and then (last night was such a night). And I’m actually awake before 11 a.m., thanks to the daily wake-up exercise routine. I’ve also discovered that, even if I am planning on doing some exercise in the morning — like outside chores that promise to wipe me out — I still need to do my exercise routine to wake myself up, before I do anything else. No compromises, no shortcuts.

My neuropsych has been, well, psyched about my recent breakthroughs. The fact that I’ve been able to manage several extremely challenging travel/family situations in the past five months… the tremendous progress I’ve been making at work… the exercise and the better choices… the difference in my outlook and how I do things, each and every day… not to mention the revelations that I’ve had about what I’m truly capable of… it’s just floored them. Part of me wonders if they’re really amazed, or if they’re just trying to encourage me. But I trust them and their judgment, and I believe them when they say they’re just amazed at my progress.

It’s true. I have been making incredible progress. I have Give Back Orlando to thank for that, as well as my neuropsych and the materials I’ve been reading. One of the main ingredients that’s been critical in my rebound from teetering on the brink of financial ruin and homelessness (I’m not kidding), a few years back, has been the approach I’ve taken to my recovery. Ever since I realized I needed to recover — to rebound — from my fall in 2004… not to mention a lifetime of multiple periodic concussions… I’ve been focused not only on understanding the nature of my issues, but also devising solutions for the issues that are tripping me up.

Indeed, when I look back at my concussive life — starting when I was a young kid, on up through my late 30’s — I can see a pattern, an approach, that has served me well in rebounding from my falls and accidents and knock-out attacks. That pattern/approach was temporarily hidden from me, after my fall in 2004, so I literally forgot how to recover. But when I started getting back, I started to get back into this pattern, and it is helping me as much now — probably more, since I understand the underlying issues — as it did when I was trying to get through my childhood and adolescence and young adulthood after my different injuries.

I could post a laundry list of all my issues — and I probably will in a later post — but I haven’t got time for that right now. Suffice it to say, I’ve got a raft of them. Tens of them. And they cause my trouble on a daily basis. Now, looking at them all by themselves (which I tried doing, a few years back) just gets way too depressing. Seeing my issues for what they are — serious and threatening to my way of life and everything I hold dear — is necessary, true. But if I’m going to recover and rebound, I have to focus not on the problems they cause me, but the solutions I develop to deal with them.

If you’re interested in figuring out how to recover and rebound from your own issues — whether they’re TBI-related or some other sort of cognitive-behavioral bugaboo, like PTSD — I’m happy to share what I do — and have done for as long as I can remember — to get a handle on my issues and overcome them, day after day. (Note: Clearly, I’m human, and some days are better than others, but this is what works best for me — and I have a very successful and fulfilled life to show for it.)

Here’s the approach I take:

  1. I figure out what I want to do. I establish a goal or a desire I wish to fulfill— Like getting out of the house in time to make it to work by 9:30 a.m. I write down what I’m going to do.
  2. I plan my approach and try to prepare as best I can — I collect everything I’ll need for the day, the night before, set my clock early enough to get up, and talk myself through what I’m going to be doing to get out the door at a decent hour. I write down the steps I’m going to follow, in the order and time I plan to follow them.
  3. When the time comes to accomplish my goal, I make a point of focusing completely on it, and I do my utmost to achieve it. I also write down the things I did, and if I don’t make my own goal, I write that down, too, and make a brief note of why it didn’t happen. — As in, I get myself up, do my exercise, and prep for the day. I make a note of what I did all along the way — not lots of notes, but little notes so I’ll remember later. If I can’t manage to get out the door, I make a note of why that was (such as, I miscalculated the amount of time it would take me to eat breakfast, or I forgot that I needed to take out the trash and clean out the back of my car) so I can go back and think about it later.
  4. Over the course of the day, I continue to write down the things I am doing, if they are working or not, and I also look back at how my day started, to put it all in context. If my late morning arrival at work threw off the rest of my day, I can see how it all comes together, and I can also shift my schedule a little bit (like take some things off my plate) so I can catch up with myself again.
  5. At the end of the day, I take a look at how the day went, and I make a note (mental and written) about the things that stopped me from achieving what I wanted to do. I think about this as I plan my next day — if I’m not too tired, I can sometimes head future problems off at the pass. For example, if I was late getting out the door on that morning and it screwed up my day, I can look at what I’ve got going on the next morning, and make changes accordingly. Like double-check my list of things to do, and do them ahead of time. Or set my clock earlier, so I have more time to get things done.

I do this every day, just about. Yesterday, I was really late for work, and I didn’t get to do some things I was  supposed to, because I had forgotten to do some essential chores the night before. I realized, over the course of the day, that I was very tired from a full and active weekend, and I did not rest enough over the past two days. I also realized that when I get tired, I tend to push myself even harder, so I needed to not drive into work today, but work from home. Working from home lets me move at my own pace AND it lets me get an afternoon nap in, which is very important — especially with the holidays coming up.

And all along, I consult my notes. I don’t try to make them all neat, but I do try to make them legible and leave room for other notes in the margins ans I go through my day. Making notes of why things didn’t work out is actually more for consideration throughout the course of the day. I don’t spend a huge amount of time with neatness and completeness. The point of writing it down is more for developing mindfulness around the things I did not manage to get done when I planned to. And giving me a point of reference, when I’m starting to get overwhelmed, as I tend to do.

All in all, the system works for me. It’s solutions-oriented, and the only reason I pay attention to my problems, is so that I can overcome them. I refuse to be held back by these issues, which can be dealt with systematically and logically and logistically. If I have certain problems with fatigue and overwhelm, I can take steps to head those problems off at the pass, or address them in the moment they come up.

This orientation towards goal-oriented solutions is the only way to go for me. It puts my issues in a context that is empowering, rather than defeatist. It also cuts them down to size, by breaking them into smaller and smaller pieces, which I can take, one at a time, to overcome them. When I look at the mammoth iceberg of issues I have — all together at one time — it quickly becomes overwhelming. But if  I break them down into “bite-sized” pieces and tackle each one at a time, AND I attack them with the purpose of achieving the goals I set for myself each day, I can make some real progress.

And I have. And I continue to. Almost by accident — but with a lot of great help from a few key resources — I have come up with a blueprint for addressing my TBI issues, one at a time. And it works. The proof is in my life, which just keeps getting better.

I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Because the way I’m framing it now:

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

Well, that’s just not working.

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

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