Bringing light

Light is where you find it – find more art like this at http://www.atagar.com/bobsGallery/

I’ve been thinking a lot about this holiday season – and all the ways that it’s associated with light. Most of the “big” traditions I know about feature light of some kind, and no wonder — this time of year is when the days become longer, and we literally can celebrate the return of the light. It’s a physiological thing, as well as a psychological and spiritual thing. And it’s well worth celebrating.

I celebrated yesterday by walking deeper in the woods than I have in a long time. Once upon a time, when I first moved to this place, I was out in the woods for most of my waking hours every weekend, rain or shine, good weather or bad. I guess I’ve always been drawn to the forest — it was the one place I felt at home when I was a kid, and there’s something really calming about being in the woods. When I was younger, I wanted to be a forest ranger, until my guidance counselor talked me out of it because it wasn’t “practical”.

Hm.

Anyway, now I get to be my own forest ranger, and I don’t have to worry about government funding cutting me off from my livelihood, so it’s not all bad, the way it turned out. And yesterday I got a good reminder of the things that matter most to me in my life — clean air, fresh water, room to roam, and friendly, like-minded people also sharing the paths.

And I couldn’t help but think about how — for years after my concussion/TBI in 2004 — I couldn’t go into the woods. I just couldn’t. There was too much stimuli there for me. It was either too bright or too dark, or it was too quiet or it was too loud. I got tired so quickly, and when I did, I got confused and anxious. And the idea of interacting with anyone I came across on the paths, was out of the question. I panicked anytime I had to interact with someone who was out for a nice quiet hike like myself. I also got turned around and lost very easily, and since I have never had the best sense of direction to begin with, I would spend hours just trying to find my way back to where I wanted to go. I told myself I was “exploring” but the fact was, I was getting lost and had to keep walking to find my way back.

And half the time, I couldn’t remember where I’d come from. Even reading maps was impossible for me. Especially reading maps.

So, I quit going into the woods. I gave up my forest. And things were very dark and dreary for a number of years. The crazy part was, I told myself it was by choice, not something I was stuck doing, because I was so trapped in anxiety and sensory overwhelm.

What changed it? I think just living my life. Working with my neuropsychologist to just talk through my daily experience. Also, doing my breathing exercises — and exercising, period. And practicing, practicing, practicing some more at the things I wanted to do, until I could do them pretty close to how I wanted to. And learning to not be so hard on myself for being different now than I was before.

I also really paid attention to the times when I saw signs of more functionality — like when I started going on hikes again, after years away from them. Like when I was able to read an entire book, after years of only being able to read short papers — and not understand much of them at all. Like when I gave things my best shot, and found them turning out pretty darned close to how I intended — sometimes even better.

Taking the edge off my anxiety, giving myself a break, focusing on things that were bigger and more significant than my own petty concerns… those helped. Those brought light to my life.

And it continues to get better.

When I think back on how I was, just five years ago, it amazes me. I was so trapped in a dark place, confused and not knowing what was wrong with me. I didn’t understand what was holding me back, I didn’t understand what was stopping me from just living my life. I didn’t understand how confused I was or what I was confused about. I couldn’t discern the different issues I had, because it was all just a dark blob of problems that pulsed like a nebula of hurt and pain and confusion. When I think about how things are now — with so much light and so much more possibility… it amazes me.

There are answers out there, if we look… if we know to ask. There are solutions out there, if we take the time to be clear about what the issues truly are. There is hope out there, when we are willing to take a chance, have some courage, and move on — move on.

As the days lengthen and we roll towards the spring (I know, winter is just now beginning, officially)… as we take this holiday season to step away from the everyday grind and do something different with ourselves… as we try to imagine what else is out there for us… let’s all remember that as dark as it gets sometimes, the night does pass. There is always dawn and a new day, just around the corner.

Yes, let there be light.

Well then, we just have to help ourselves

It’s the ultimate irony, isn’t it — that TBI survivors, especially mTBI survivors — are so vastly underserved by the healthcare establishment. Traumatic brain injury, concussion, head trauma… whatever you care to call it… affects the United States on a vast scale, yet somehow it doesn’t warrant a concerted effort to deal with it.

Huh. Go figure.

Every 21 Seconds, someone in the U.S. suffers a traumatic brain injury. Each year 1.5 Million Americans suffer a traumatic brain injury. 5.3 Million Americans are currently disabled by a traumatic brain injury, and 80,000 Americans sustain long-term disability from TBI each year.

What’s more, when TBI strikes, the healing doesn’t happen the way, say, a broken arm or a broken leg does. You can’t put a cast on your brain and have people sign it and tell the world that you’ve got a temporary disability that they need to keep an eye on. You’re lucky if you even know you have a brain injury. Many, many people — like Natasha Richardson, for example — never have a clue what’s going on in there.

Doctors know. At least, there’s medical literature available about it, which explains the effects and how serious they can be. There’s plenty of evidence, too, that those of us who have sustained TBI are in dire need of help getting our minds around the states of our brains. A broken arm or leg will make it quite clear that it’s broken. Not so with a broken brain. That puppy will lie to you till the cows come home… or your lying face-down in a gutter, ruined and destitute (whichever comes first).

TBI is insidious and debilitating. It’s also epidemic. There is ample medical literature to educate and inform caregivers.

And yet, the American medical establishment can’t seem to get its act together to address this obvious crisis in a consistent or reliable way. For all the expertise about the body, nobody seems very interested in figuring out for real how the brain works. It seems to be all about, “We’re so smart, we realize how wonderfully complex the brain is, and we don’t really understand how it works. More science still needs to be done.” And we have to wait ten years for the results of the very limited clinical trials to be vetted and published. What knowledge is out there, is often incomplete and inconsistent, or professionals are not paying proper attention to the right info. Going to see a neurologist is like rolling dice — no, you have better odds with rolling dice, as there are far fewer choices and far fewer gray areas, and if you roll snake eyes, there’s no professional excuse-making and elaborate every-brain-is-different question-dodging. It’s just skake eyes. And you deal with it.

If only neurologists were as straightforward. Or emergency room staff. Or primary care physicians, for that matter.

I suspect that part of the problem is that medicine has turned into a for-profit business, with profit motive being a prime mover in people’s decision-making process. Granted, it’s not cheap to run a medical practice — malpractice insurance alone swamps many docs and discourages many others from even practicing. Medical supplies are pricey. Tests are, too. And what tests there are, often don’t even render any useful information — especially when it comes to TBI.

The brain is a wonderfully plastic thing, and it has a way of masking its issues — both from imaging machinery and the survivors of trauma. And when you’re sitting on the other side of a desk from a doctor who relies on imaging and test results and feedback from the patient to determine what’s up — and they are presented with someone whose tests all come back looking fine, and who also cannot articulate their actual issues, then there’s only so much they can do.

Which puzzles me. The model for this kind of medical practice is so clearly ineffective, I can’t quite understand why more people don’t make a point of fixing it.

Or maybe they do, and we don’t hear about them. Maybe they do, but they’re so busy taking care of patients that they don’t have time to tell the world what they’re up to.

Lacking medical care is just one of the many issues we face, when our brain has been re-wired. If we can find a decent neuropsychologist, we may be dealing with someone who is actually working for the insurance companies and is paid to prove there’s nothing wrong with us. Or they may be of the school of thought that believes that TBI is an irreversibly damaging condition that just can’t be helped, so just make the best of what you have, and quit complaining so much. Or they may not be very good in other ways.

Dealing with the outside logistical world, when we’re impaired, is another huge challenge, which has been documented and described pretty thoroughly over at Absolute Twisted Zero. I have WAY too many of my own frustrating stories, usually happening immediately after my injuries. A lot of my problems resolved over the following years, by right of my just sticking with things and keeping at it, but the cumulative effect of having run up against so many walls is, well, traumatic in its own right.

The TBIs I experienced may have been initially mild in nature, but I can tell you a whole lot more very real trauma continued afterwards — both immediately and for years after. I’m still digging out from a bunch of those kinds of traumas. It’s resolving, slowly but surely, but it takes for friggin’ ever.

Looking around online, reading other TBI survivor blogs, and hearing what people say in forums and online communities, it’s pretty clear to me that when it comes to TBI, if we are to truly recover, we survivors have to help ourselves. It’s about the dumbest thing on the face of the earth, as far as I’m concerned — it’s like handing a blind person a needle and spool of thread and scissors and telling them to hem their own pants, so they don’t look so silly, walking around with their pant legs different lengths.

Yeah, it’s pretty much exactly like that. First of all, we can’t really tell that well if our pant legs are even the wrong length. We can’t see them clearly from where we stand, and we have to gauge our visual acceptability by the reactions of others — which means we spend a lot of time being laughed at, like Harrison Ford’s character in Witness, when he was wearing the pants of that deceased Amish man, and they were a few inches too short.

And then, once we figure out that our pants are not the right length, we need to cut the thread to length, thread the needle, and handle the sewing, all without the benefit of vision. At the rate we go, judging from environmental feedback, it can take years for us to get our pants hemmed properly. If we ever do, at all.

If we can get help from someone else, however, our chances may improve dramatically. That help can come from family or friends, or it can come from honest feedback from others around us who may or may not know about our TBI. That help can come from competent rehab folks or compassionate doctors or caregivers. But it’s generally uneven and unpredictable. And it’s also dependent on the state of mind of the person helping us.

In the end, in my experience, I find it best to just help myself. My spouse’s patience wears thin with me, and they sometimes accuse me of using TBI as an excuse for bad behavior. My co-workers help me intermittently with keeping me on track, but they know nothing of my history (nor will they ever, if I have anything to do with that), so there’s only so much I can ask them to help me with. My neuropsych is great, but they’re also in great demand, and they serve a lot of people who are in greater everyday need than I, so there’s only so much I can ask them to do.

Ultimately, I’m on my own. I have my tools, like my daily planner and my journal and my research. But I have no access to regular rehab, no one person dedicated specifically to helping me through the regular rough patches I hit. I’m the one driving the “car” of my life, and I’m the one who has to watch out for the proverbial black ice. Or washed-out bridges. Or SoCal-sized sinkholes. Nobody else is driving this car, and nobody else can help me quite the way I need to be helped, on a constant, daily basis.

It sucks, when I think about it. So, I try not to think about it.

I focus on helping myself.

God help me.

The downward spiral of fatigue

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

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

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

Here’s how things steadily go downhill…

The Downward Spiral of Agitation and Fatigue

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

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

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

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

Stop the madness!

Seriously.

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

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

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

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

Wonder of wonders.

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

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

Onward…

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.

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.

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

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

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

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

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

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

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

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

One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

  • Confusion
  • Amnesia
  • Headache
  • Dizziness
  • Ringing in the ears
  • Nausea or vomiting
  • Slurred speech
  • Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

  • Memory or concentration problems
  • Sensitivity to light and noise
  • Sleep disturbances
  • Irritability
  • Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”

Duty to Warn: The Fort Hood Murders/Suicide and the Taboo Question

The Baltimore Chronicle has an interesting article by Gary G. Kohls, MD about the role of psychiatric medications in the Fort Hood incident. From the article:

Most of us have been listening to the massive, round-the-clock press coverage of the latest mass shooting incident at Fort Hood, Texas. Seemingly all the possible root causes of such a horrific act of violence have been raised and discussed. However, there is an elephant in the room, and it’s something that should be obvious in this age of the school shooter pandemic.

We should be outraged at the failure of the investigative journalists, the psychiatric professionals, the medical community and the military spokespersons who seem to be studiously avoiding the major factor that helps to explain these senseless acts. Why would someone unexpectedly, irrationally and randomly shoot up a school, a workplace or, in this case, an army post? Why would someone who used to be known as a seemingly rational person suddenly perpetrate a gruesome, irrational act of violence?

The answer to the question, as demonstrated again and again in so many of such recent acts of “senseless” violence, is brain- and behavior-altering drugs.

You can read the rest of it here.

I can see his point, and I think it is a good idea to factor in the potentially dangerous effects of psychoactive drugs. But I also believe there are many layers to this, the effect of drugs being only one of them. Something(s) else contributed to pushing the shooter to that point. And I’m not sure we can fairly lay all the blame at the feet of the pharmaceuticals industry.

Whatever the cause of the rampage, this issue of pharma-gone-bad is of particular interest to me, because as a multiple-TBI survivor with a bunch of cognitive-behavioral issues, it could be all too easy for a “qualified” doctor or neurologist or psychiatrist to load me up with a bunch of pills and send me on my way. I consider myself unbelievably fortunate and blessed to be working with a neuropsychologist who is very wary of pharmaceuticals and approaches them as a last resort, when all else fails. They are also very happy when I come up with alternative solutions to my issues that work well and do not involve drugs –  like exercising regularly as an antidote for fatigue and drowsiness and a way to wake up fully in the morning.

Interestingly, my psychotherapist tends to come down on the side of drug therapies for individuals with attentional difficulties. I may have to cut them loose, if they turn out to start pressuring me to resort to drugs. If they so much as start hinting at me using them, simply because other approaches “don’t appear to work as effectively” I may have to have to reconsider working with them and seek help elsewhere. Who knows? I may even cut out the psychotherapy completely.

Hard to say, at this point. I think it’s been helping me in some ways… no, I’m pretty sure it has.

But I have been growing a little more leery of my shrink, over the past month or so. They seem more distant than they did at the start. They also have said some things to me over the past couple of sessions that don’t sit right with me, but I haven’t actually followed up on. I should probably do that, to clear the air. It’s hard for me to spend the time and money with someone who I think doesn’t believe me, or seems to be insinuating that I’m misrepresenting my difficulties to the rest of the world. I’m not sure if they think I’m worse off than I appear to be, or if they are just having a hard time, themself.

To be fair, they did suffer a devastating personal loss, last year about this time, so I think it may be messing with their head a little bit. They have definitely not been at their best, of late. So, I’ll cut them some slack, give it some more time, slow things down, and not let them pull any punches with me. We’ll see how it goes.

Bottom line (if there is one) is… mental health care providers can have problems, too. And those problems can get to them in some pretty serious ways.  I’m just glad my shrink isn’t trained in small arms — I’m assuming they aren’t — and that they don’t work in an environment where the use of firearms is part of the job.

A good sturdy kick in the behind

Every now and then, I need a good strong boot in the butt. Not a gentle reminder, not a tender prompt, but a real impact that stings at the start, but ultimately turns out to be the lesson I needed — a lesson that I either “get” and live my life better in the aftermath… or if I don’t get it, I sink like a rock.

I have fortunately had the good sense to go back to reading the Give Back Orlando materials on Self-Therapy for Head Injury – Teaching Yourself to Prevent Head-Injured Moments. I had told my diagnostic neuropsych about the materials, and they said they thought it’s “good science” and is consistent with what both of us believe — that just because you’ve had a head injury does not mean you have to settle for a marginal life limited by your issues. There are things you can do to offset or compensate for or heal the issues you’ve got. A head injury does not have to be the end of the story.

And after I told my neuropsych about the material, it reminded me that I have not gone back to it lately, and I have not in fact read the whole way through the material. It was embarrassing to admit it, but I’m going to put that embarrassment to good use, and remedy the situation.

I have not been nearly enough focused on my recovery, of late. I have not made it a priority. And, in fact, after reading the section on priorities: CHAPTER TWENTY-SIX: SETTING MY PRIORITIES in the Advanced Section, I realized that I need to do something about this. I’ve still got a long way to go to make this somewhat leaky boat of my life seaworthy again. I have made tremendous progress, over the past years — especially since my fall in 2004 — and especially in the past 6-8 months. But I still have a long way to go, to keep the screwed-up automatic responses of my “alternative” brain from messing up my life.

I have a lifetime of bad habits that came out of injuries to address. I may not fix them all, and I may never even discover them all, but by God, I’m going to at least take a shot at doing the best I can to overcome them, turn my thinking around, and live the life I know I’m meant to live.

There is a lot at stake with me. Personally and professionally. I’ve started a new job, which is a gateway to better paying work that suits me better than the production-type work I’ve done for the past 20 years. I’ve become very good at following instructions from other people, and I excel at doing what I’m told. That’s come from a lifetime of hard work and deliberate refinement. My ability to follow explicit directions has been a reliable meal-ticket. It’s bought me a house and two cars and made me far more functional that someone with my history of head injury “should” be.

But now I need to bump it up a notch and see where else my abilities can take me. I have considerable capabilities, in addition to my limitations. I have a raft of strengths that are just sitting around waiting to be used, while my relative weaknesses play havoc with my daily life. I spend so much time managing the cognitive-behavioral challenges I have, that I rarely get/take the time to focus on building my strengths.

And I have languished.  For over 40 years, I’ve settled for less than I was capable of having/doing/being, because of the corrosive effects of those invisible challenges. What a shame and a waste. I have let my talents and abilities sit on the back burner, while I’ve put out fires flashing up all around me. I have not focused fully on developing my strong suits, because the weakling aspects of my person have monopolized my attention to the point of distraction, dissipation, and inertia.

Good grief.

But I really can’t spend any more time, right now, bemoaning that. The time I spent worrying about what’s gone before, is time I don’t have to spend on thinking about what’s yet to come. And I need to think about the future. I have issues, I know that. I have had difficulties in the past. I know that, all too well.

I have spent the past year and a half examining the parts of my life that have gotten totally hosed — specifically by TBI. The whole point of doing this, is not to feel bad about it, to beat myself up, and back away from life. The point of doing this, has been to identify the things that need to be fixed, and then come up with a way of fixing them.

Or compensating for them.

Or avoiding the stuff that just can’t be fixed.

Now I have tools and support to address the issues I know I have. And that’s what I’ll do.

So, what needs fixing? This morning, I’m focused on my long-time bad habit of not following through on what I promise to do. For a lot of different reasons, I tend to commit to things, and then I don’t complete the things I say I’ll do. I get sidetracked. Distracted. Confused. And I back away from the job, going off to do something else, instead of buckling down and doing what I said I would.

It’s one thing, if I do this with myself — I’ve done it all my life, with countless personal projects planned and started and then never completed. But I’ve also done it with people beyond the confines of my head. Ever since I was a kid, failure to complete was a huge issue with me. And it’s dogged me into my adulthood.

And now that pattern needs to change.

So, I’m changing it. Deliberately. Intentionally. With real resolve and commitment.

One of the things I’ve been looking at, is why I lose the fire. Why do I start things so enthusiastically, and then lose my enthusiasm? There are a number of reasons, but the main one seems to be that in the midst of all the details, I lose sight of the Big Picture. I lose track of what I’m doing and why I’m doing it. I forget the whole purpose behind it. I forget the reasons I got excited to begin with. I lose track of where the details fit in terms of the overall project. And I get lost.

Then I walk away. I lose sight of my Priorities, which inform the Big Picture of my life.

From the GBO Material:

Summary: Good decisions are made in accord with your personal priorities.

The decisions you regret making are the ones that conflict with your priorities.

The head injury makes it easy to overlook them. By bringing your priority list up to date and using it actively to guide your decisions, you can take better control of your life and make sure that the decisions are guided by your needs.

The Issue: Planning depends on having a clear sense of what’s important to you. You can’t make decisions about what you are going to do, or how you are going to spend your money, or which opportunities you are going to take and which you are going to let go, unless you know what your priorities are. Knowing priorities is something an adult normally does automatically, but it doesn’t work automatically after a head injury. After a head injury, too many decisions are impulsive. They are made to pursue something that is interesting at the time, but without thinking about how the higher priorities will be impacted. For example, survivors get mad at the boss and blow him off, losing the job. Only later do they realize how important the job was to them. If they had only thought about their priorities at the time, they might still have that job.

Yes, too many of my decisions are impulsive. I don’t hold myself firmly enough to a set plan of action. I make my notes and plan my activities, but then I get pulled off in all sorts of different directions by distractions and entertaining sidelines. I start out researching something necessary, then I get intrigued by an experiment I want to try, and I get sucked into that for hours. Eventually, I resurface and realize I’m so far behind, I’ll never get the important things done that needed to be done that day.

And I get down on myself, feel bad, beat myself up, tell myself, “You did it again…” and that takes a toll on what little self-confidence I started with. Slowly but surely, one small failure after another has chipped away at my self-confidence, undermining my belief that I can get things done. Bit by bit, I’ve allowed this to erode my sense of capability… it’s a wonder I ever start anything.

But I do start. I start again. Day after day, week after week, month after month, year after year. I start again. I take another shot. I don’t give up. For whatever reason. There is still a part of me that hopes, still a part of me that’s willing to try. I’m not sure why or how, but that’s not for me to question.

The missing piece is not the starting of things. It’s the continuing. It’s the completing. Tying up loose ends is the temperamental problem-child of my productivity repertoire.

Now, I’ve started again — this time with a new job. And this time I really don’t want to make the same mistakes I’ve made in other places. This time, I need to complete. I need to continue until I complete. I need to clearly and succinctly identify what needs to be done, and I need to do it. This is not optional. This is essential. It’s not up for discussion. I absolutely positively need to make sure I follow up on what I say I’m going to do it, and come hell or high water, by God, I have to get the job done.

That means controlling my impulses. That means mastering my distractions. That means keeping the Big Picture in mind and not losing sight of my promises. That means re-prioritizing my life — clarifying my priorities, to begin with. It means reminding myself daily of what I want, what I need, and what I have to do to get where I’m going.

I am by nature a very disciplined person. I have principles, and I have good intentions, and all I really want to do with my life is help others and reduce the quotient of human suffering in the world. The problem is not with me and my character. The problem is with how my brain works, and how it works against me.

That being said, I’m putting together my toolbox for dealing with all this … complexity

Again, from GBO:

The whole process of thinking about priorities has to be different after a head injury. Before, you probably automatically threw out unrealistic goals. Now you automatically accept unrealistic goals, and you can be realistic only by carefully looking at each goal and judging whether it will work or not. For example, a patient who was highly successful in going to college, getting top grades, and planning a career, was totally unsuccessful in setting goals for romantic relationships. He wanted a really hot, young woman, while he was now middle-aged, physically disabled, and relatively poor. He had gone without a date for 12 years because the women he met who matched up with his priorities would not date him, and the ones who would date him did not match his priorities.

If your priorities are unrealistic (especially if they are based on what your old self could do), then your life will be an exercise in frustration and failure. The only way to lead a successful life is to make sure that you ask yourself to do only those things you are really capable of doing. I cannot begin to properly explain how hard this is to do. It takes even the best recovered people years to reset their priorities so that they are truly realistic. To get there, you need to think about it often, and work on it regularly. But the reward for getting your priorities straight is sweet: Your life begins to make sense again.

Even after you have adjusted your priorities, it doesn’t guarantee that you will use them. Every time you make an important decision, your priorities control your decision process only after you make yourself stop and think about them.  . . .

I need to develop realistic goals. The type of goals that take into consideration not only the abilities I have, but how much time in the day I have. I need to let go of unrealistic expectations and goals and focus on the ones that make sense for me.

That means doing things like jettisoning a lot of the little projects I have sitting around in the wings. If they don’t immediately serve my Overall Goal of paying my mortgage and all my other bills, they have to go away. If they don’t serve my Important Goal of keeping my job and doing well professionally, then they have to go away. If they just serve to distract me from my discomfort, like a recreational drug of some kind, then I have to live my life without them. I don’t drink and smoke. Why would I dissipate my energies and wear myself out on little projects that serve no purpose other than to pass the time and get my mind off my troubles?

Focus… Focus in… That’s what I’m about, now. It’s what I have to be about. I can’t afford to screw around anymore. I’ve found work I love to do, that I can excel at, and now I need to make doing it a top priority. I realize more and more, each day, that my neurology mucks up my life in countless little ways that add up to big problems. And I need to make my ongoing recovery an even bigger priority. First things first. Figure out what matters. Ditch the rest. Be honest, be brutal, be effective, and in the process get my life back to a state that actually makes sense to me.

Onward.

Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

  • My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.
  • If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.
  • It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.
  • My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB