So, on Sunday I spent the afternoon reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain”, about how she learned how to identify the underlying issues beneath her severe learning disabilities, which had made her life a living hell for 26 years of her life. I found the book for free on Scribd.com — my new favorite place of all time. You can read the book for free here: https://www.scribd.com/book/224350322/The-Woman-Who-Changed-Her-Brain-And-Other-Inspiring-Stories-of-Pioneering-Brain-Transformation – you just need a free login.
Anyway, I am finding a lot of similarities between her situation and mine, despite obvious differences. And it occurs to me that after hearing a number of accounts of her hitting her head (running into things, banging her head before she started to study, etc.) TBI might just factor into her account. She focuses on the learning disabilities parts, rather than the root cause, so that makes the book more accessible for folks who have had any kind of difficulty with learning and understanding and communicating — me included.
One section in particular jumped out at me yesterday:
I recall a twelve-year-old student with average intelligence but whose severe weaknesses in both the left and right prefrontal cortexes left her as compliant as a young child — so compliant that other children would toy with her and order her to stand and sit on command or to stay in the schoolyard long after recess was over or to surrender her Nintendo game. Her neurological weaknesses had robber her of her ability to evaluate a command and decide whether it should be obeyed. She addressed her problem areas and eventually was able to say no.
That’s pretty much me — but in very different kinds of situations. I didn’t have a problem with being compliant and going along with others as a kid. If anything, I was defiant and went against what anyone and everyone told me to do (except for my love interests — they could always boss me around).
The compliance and obedience and lack of questioning happened in adulthood. And I wonder if the three car accidents, the fall off the back of the truck, and the occasional head-banging — all in my early adulthood — might have affected my prefrontal cortexes to the point where I would just compliantly do whatever my spouse told me to do.
If that’s the case — and my compliance has been neurological, rather than emotional or character-based — then that’s a huge relief. And it means I can do something about it. For close to 20 years, I pretty much went along with whatever my spouse told me to do. It wasn’t so pronounced in the beginning, but then it got worse.
I had a car accident in 1997 where I was rear-ended, and I couldn’t read for several days. The letters swam on the page, and I couldn’t concentrate on anything. I recall feeling weird and shaky and being a bit “off” for some time after the car accident, and I wonder if maybe that affected my prefrontal cortexes and made me more compliant. People around me thought my spouse was bullying me, that they were being abusive and domineering, but honestly, I just went along… because it was the only thing that seemed useful to me.
I need to check around to find out more.
Anyway, that’s just one part of the book that I’m really enjoying. There are a number of different places where I recognize myself — the hesitance, the inability to get things done, the self-regulation problems… I’m not sure I want to think about them in terms of learning disabilities, but rather brain capabilities. And they apply to all kinds of situations, not just educational ones. That’s something that the author talks about a lot — how addressing these learning disabilities will improve functioning in the rest of life.
What Barbara Arrowsmith-Young has done is remarkable. She’s really figured it out — and from the inside, not from the outside. It’s amazing. I’m a huge fan, and if I were religious, I’d recommend her for sainthood. Her story is one of the reasons I got myself into neuropsych rehab, in the first place — when I read Norman Doidge’s “The Brain That Changes Itself” her story stood out for me more than any others. Because she took it on herself, and she did the work, instead of having someone else do it for her. And now she’s passing it on to others. She does public lectures. She has her Arrowsmith School. She’s written a book.
Unfortunately for me (and probably many others), the Arrowsmith School is expensive. And it’s in Canada, which is not an impossible distance from me, but still… I have to go to my job each day, I don’t have a lot of money to spend, and I’m thinking there must be another way to get this kind of help without being locked into a specific location, or paying someone to get me on track.
Again, I come back to living my life as the best recovery. Living fully and reflectively. Mindfully. Engaged. All those catchwords that basically say,
Do the best you can each and every day…
Be honest with yourself about what’s going on…
Learn from books and movies and the world around you, your experiences, your teachers and your mistakes…
Change what you can so you do better next time…
And share what you learn with others.
Absent the resources to enroll in the Arrowsmith School for months (if not years), and with the help from a handful of competent professionals, I seem to be making decent progress.
I’m scrapping the idea of going to the ER today. I stretched and moved yesterday, and I took a real break — spent the afternoon napping, reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain” (more on that later), and just puttering around the house, taking it easy. I’m going to mention the left-side weakness to my counselor, just so someone else knows about it. And I’m probably going to check in with my neuropsych on Wednesday. I do feel better, after taking some time off, and now the idea of embarking on a medical adventure doesn’t seem like a good use of energy.
Oh. My. God. When I think about having to explain my situation to doctors all over again… Yeah, no thanks.
So, a big shout-out to those of you who talked me back from thatedge. I owe you.
It’s Monday. Only two more days in the office 20 miles from home. Then I move to the office 5 miles from home. It’s exciting. Also, I’m barrelling down the road towards a couple of big-big deadlines this week. That makes things easier.
It’s interesting — I’m gradually getting the hang of living by deadlines and holding people to them. In past situations I’ve worked in, there were two kinds of situations. Either
The deadlines were fluid and there wasn’t a hard-and-fast rule about when things got done, and in what order. People were sort of lackadaisical about doing their jobs, and if it got done, then woo hoo. But if it didn’t get done, oh well. Or
Deadlines were in place, but everybody was a top-notch over-achiever who would have sooner cut off their left hand, than not do their job.
Now, everything is about the deadlines… but I don’t have a top-notch gang of over-achievers available to me, to get the job done. I have maybe one or two, who are usually overworked.
Sigh.
Well, it’s all very educational. Now I get to learn how to motivate people who have no real reason to be motivated at all. They don’t report directly to me, they aren’t all that thrilled about their jobs, and the burning desire to excel doesn’t seem to light up their days and nights.
Interesting.
So, now I get to learn how to make it all happen. And in the end, that’s going to be a valuable skill. I just have to acquire it.
I’ve got some more work to do on restoring a sense of self after TBI. I’m also restoring a sense of my own self — as much by slogging through the tough times, as experiencing the good times.
In a way, slogging through the tough times is even more useful to me than having everything go well. It shows me that I can do this thing, called adapting and overcoming. And it teaches me valuable skills along the way. I am extremely rigid and uncompromising in some ways, which can come in handy, when it has to do with personal integrity and delivering on my promises. When things come up to oppose my grand plans — as they invariably do — I can either buckle and fall to pieces (that sometimes happens), or I can learn from it and add to my overall knowledge and skill in handling those types of situations.
I choose the latter. And instead of tearing myself down — e.g., beating myself up for going off the deep end yesterday with the sensations I’m having on my left side — I can learn from the experience, chalk it up to, well, being human, and move on with a little more information under my belt.
And when I focus on learning and growing from experience, that builds up my feeling about who I am and how I handle myself. Getting bogged down in despair and frustration is not how I want to be. It’s now how I understand myself to be. So, I have to find a better way. And recognize my limits — my tendency to go all catastrophic on things that happen with me — so I can keep them from taking over my life. I have limits, just like anyone else, and they are part of me — but only a PART of me, not all of me.
Having a broader sense of myself as a collection of many features and qualities, as well as a lot of strengths along with my weaknesses, makes all the difference in the world. I can’t gloss over the tricky parts, but I sure as hell can emphasize the cool stuff, and make the most of that.
Speaking of making the most of things, I need to really focus on getting into my day. It is SO HARD to get going for work, this morning. Mondays have been very difficult for me, lately. Transitioning into work and really getting invested, has been a monumental task. I dread everything about it, and I can’t seem to get into the day, no matter what I do. I know why, though. It’s old patterns from many years of bad experiences that are cropping up again, just at this point in time. Four months into just about every endeavor, this happens with me. Like clockwork. More on that later.
Anyway, the day is waiting, and I have a lot to get done today. Things are looking up, and that’s a good thing.
More than ever before, I’m convinced (and riding the bandwagon around the square, beating on my drum) that the body and mind are so closely intertwined, that you cannot possibly separate out the two.
You take care of the body, and the brain will benefit. The mind will benefit, too. I differentiate between the mind and the brain because I believe (like others) that the biological, physiological organ of the brain is just one part of what makes up the mind. When you take care of the body, the brain benefits. And when the brain benefits, the mind has something to work with.
Body-brain-mind connections matter. They have such a profound impact on our health — and our illness. That goes for mental health. It goes for TBI recovery. It goes for effective and lasting healing for PTSD. If you leave you body out of the equation, while trying to fix your brain, your mind may have a hell of a time getting back on track and up to speed.
Now, don’t get me wrong. I don’t advocate that everyone who’s struggling with mental health issues, TBI, and/or PTSD run out and join a gym and get ultra-ripped. I’m not saying that you have to become a competitive athlete or reduce your body mass to 5% (which might be physically unsafe, in any case – our bodies need fat). And I’m not saying that if you’re in poor physical condition, you’re going to be a vegetable.
I am saying that exercise, when done carefully and regularly, can and will benefit not only your body but also your brain and your mind. It’s not blind faith I’m falling back on — it’s scientific fact, documented research, and personal experience. It doesn’t have to be torture, it doesn’t have to involve pain. It can be as pleasant as a walk on the beach with a loved one and your dogs, or perhaps a swim in a beautiful lake. It can be as everyday as taking the stairs three flights up, instead of taking the elevator. And it can be as invigorating as a game of touch football with your friends on Thanksgiving Day.
But if it’s not at all a part of your life, and you’re dealing with the challenges of TBI and/or PTSD, I’d hazard to say that your row is going to be a bit harder to hoe.
By now there is so much documented evidence that exercise and aerobic movement aids the brain, that it’s impossible to ignore. And it would be negligent of me to not beat on my exercise! drum, if I genuinely want to help people overcome the challenges of TBI (which I do).
For all the talk about TBI and PTSD among veterans, nowhere do I hear anyone talking about how soldiers returning from Iraq and Afgahnistan can help themselves with exercise. The VA may not have the proper pieces in place for highly effective diagnosis and treatment, and they may be discharging soldiers with inaccurate “personality disorder” diagnoses, but the one thing I see time and time again, when I look at YouTube videos of soldiers training, is gym and exercise equipment. Even gyms built in shacks on the sides of mountains in a godforsaken country far, far from home.
This puzzles me. Why would a treatment so effective and so familiar and so self-directed not be promoted and plugged (especially for soldiers), till everyone is sick of talking about it? Maybe it’s “too easy” and people think that it’s something that’s “extra” in addition to meds and/or directed therapies. Maybe it requires “too much” consistency and people don’t know how to work up the motivation to do it regularly enough to make a difference. Maybe the VA didn’t get the memo about U@B’s success stories. Maybe veterans are waiting for someone else to initiate treatment and get them on the right path.
It’s complicated, of course. I suspect it may also have to do with the professional interests and personal makeup of the top experts. After all, if earning your bread and butter (not to mention your reputation) comes from the control of information and the dispensing of advice and assistance under strictly controlled and controllable circumstances (like your office or a rehab facility), and you feel your professional position is threatened (or you may lose clients to outside forces), you don’t necessarily have a deep-seated incentive to encourage people to do simple, common-sense activities on their own (which provide tremendous benefits without requiring insurance billing codes).
Plus, if you’re a person who’s made your mark in the world sitting at a desk or standing at a podium, and you don’t have a real focus on physical fitness in your own life, why would you even think to recommend exercise to your clients/patients? The personal element to this — i.e., non-athletic individuals (who may have gotten into science and medicine because they sucked at sports) who have an aversion to exercise — should be factored in.
Plus, the focus on the brain and psychology and “mind over matter” that pervades Western science probably hasn’t helped us appreciate the role of the body in the functioning of our brains and minds.
Personally, I don’t have those sorts of conflicts of interest or an individual bias against exercise. Quite the contrary. I love to move in coordinated and sport-like ways, and I’ve got nothing to lose by telling everyone I encounter (or who reads this blog) that exercise can help heal what’s been hurt. And the more I think about it, and the more I use regular exercise in my own recovery, the more passionate (even zealous) I become. Each and every day, this flame burns a little brighter in my belly.
To say that exercising regularly changed my life for the better would be an understatement. Once I started working out (very lightly and low-impact) each morning before I got started with my day, my anxiety level almost immediately began to decrease. Less anxiety meant less agitation, less temper flares, less acting out, less losing it over stupid shit. It has meant that my spouse can now be in the same room with me for extended periods of time. A year ago, that wasn’t the case. It has meant that I can start out my day without two or three private melt-downs that used to deplete me daily and leave me feeling broken and wrecked even before I left the house to go to work. It has meant that my constant headaches have subsided and my aches and pains which followed me everywhere and never totally went away, did in fact calm down. They’re not gone completely 100% of the time, but they are generally much less intense, and they don’t stop me from living my life, like they used to.
To say that my life between my fall in 2004 and my starting regular exercise in 2009 was getting progressively worse would also be an understatement. All that agitation, that anxiety, and the unstoppable extremes of panic and fight-flight-freeze gushing through my system were tearing the hell out of me. It was more than “just” TBI. It was (I believe) also a sharply spiking case of PTSD that arose from the constant “micro-traumas” of my TBI-addled experience, and it was destroying my life.
My brain was broken, and my mind was, too. In no small part because my body was broken in ways that no one could see.
How frustrating it was. I was trying like crazy to figure things out… totally fogged from my messed-up wiring, all disconnected and confabulated, and cognitively impaired by the daze of biochemical gunk that built up in my system.
It was like driving down a dark, unfamiliar road that’s full of potholes that I kept hitting, with the inside of my windshield fogged up.
Source: stoutandbitter
But then I started exercising. And you know what? Everything started to get clearer. Getting regular exercise each day was like taking a paper towel and wiping away the fog inside the glass. The road was still dark, and there were still potholes, but as long as I kept the inside of my windshield clear, I had a fighting chance. And slowly but surely, the sun started to come up.
Source: Kate Joseph
The road wasn’t particularly well-paved, and there were still potholes, but I could see them, at last, and I could adjust to my circumstances. As long as I was all jacked up on cortisol and adrenaline, I was S.O.L. and hurting from it. But when I started to clear that crap out of my system, I at last had a fighting chance to get on with my life.
My feeling about exercise are similar to feelings among my relatives about being born-again religious converts. There’s something so invigorating, so life-giving about this “new” discovery, that we feel ourselves transformed. And in a way, exercise has become a kind of spiritual practice for me. It gives me new life each and every morning, and even on those days when I’m not feeling as moved as other times, I still recognize the worth and value of this practice.
I would go so far as to say that exercise comes about as close to a “magic bullet” for TBI/concussion recovery, as anything I’ve come across. More and more experience and research is bearing that out, and plenty of TBI/PTSD survivors will agree. And the best part is, it not only strengthens the body and the brain, but it also gets you off the couch and/or out of the house and can get you into the company of other people where you’re less isolated, and you can interact with them in a structured context. TBI and PTSD can be terribly isolating. Having structured physical activity to get you up and out, and also provide a way to control your own social interactions is helpful in so many ways.
Out for a walk? You’re not only giving your veins and arteries and lungs and lymphatic system a much-needed boost, but you can also encounter people along the way with whom you can chat. Having trouble understanding what people are saying to you and following the conversation? You can excuse yourself and walk on, and no one will think anything of it. Feeling bad because you had trouble with the interaction? You can walk it off.
It’s what I do.
And the results have been amazing. (Obviously, not everyone has the same experience, and you’ll certainly have your own, but this is mine.) After hiding myself away for years, I’m back in the swing of things, taking care of what’s in front of me. Granted, I have my down days, and motivation is still a problem with me, but feeling as good as I do (aches and pains notwithstanding), I feel up to dealing with it all.
These results (and more) came after a relatively short time of doing them. Seriously. I started seeing real results after only a few weeks. Just in terms of feeling better, more centered, less foggy, more awake in the morning.
And this, after a prolonged period of sedentary isolating.
Oh, sure, I was active as a kid (and clumsy and prone to falling and hitting my head, unfortunately), and I went through periods of working out regularly and getting regular exercise as an adult, but after my last fall in 2004, the whole exercise thing went right out the window. It was bad. I went from being a regular at the gym to not even being able to set foot in the building, because I was having so much trouble understanding what people were saying to me — it totally freaked me out.
That freaking out was a problem. It was a problem at work and at home. It was a problem when I was with people or alone. My sympathetic nervous system was whacked and everything I encountered that was new or unfamiliar felt like a life-and-death threat, which had me pumped up on adrenaline all the time. I was a mess to live with. I had fallen, and I couldn’t seem to get back up.
I became intensely inactive. I stopped mowing the lawn and taking care of the plantings around the house. I stopped clearing leaves when they fell. I stopped sweeping the driveway. I stopped fixing things around the house when they were broken. I stopped going for the walks that I’d loved to go on for as long as I could remember. I stopped talking to people. I stopped talking to my spouse. I just stopped. Everything I encountered felt like a monstrous threat — one to be fought to the death or fled from in terror.
God, how miserable that was! The wild thing is, I didn’t even realize how whacked I was. All my alarm felt 100% justified. I felt absolutely positively certain that every novel situation I encountered was indeed a threat to my safety and sanity. I was going rapidly downhill, and I wasn’t going down alone. I hate to say it, but my spouse’s health declined rapidly as my own TBI issues escalated.
So, what got me out of that? Realizing, for one, that I was in danger of being put on meds for my attentional issues. My PCP had mentioned the possibility of putting me on something for my distractability, and my neuropsych had started mentioning the different medication options available. Talk about freaking me out. I had been on some heavy-duty meds for pain, back about 20 years ago, and they totally screwed me up. To the point of partly disabling me. What’s more, the thought of having someone else control my biochemistry — whether a pharma company or my neuropsych or my doctor (none of whom have to live in my body and brain, and none of whom are instantly available to me, should I get into trouble) — freaked me out enough to get me to sit up and pay attention and try to find some other way to wake myself up in the morning.
I had been trying for some time to figure out how to get exercise into my life, as I watched my weight increase and my strength decrease. I just didn’t have the intensity of focus required to figure out how.
When the docs started talking meds, I found my focus real quick.
The rest, as they say, is history. My life has done a 180-degree turn, and my mind and body and brain are doing better than ever. My neuropsych kind of looks at me oddly when I rave about how awesome exercise is, but theyr’e not living in my body and dealing with my brain, so how would they know what a qualitative difference it’s made? My PCP, thank heavens, is no longer talking about meds, and my level of functioning is on a whole new plane.
All this, I believe, because I have a solid physiological foundation. I’m exercising all my brains — in my skull, my heart, and my gut — and exercise helps them all communicate better with one another. My anxiety experience is now such that I can delay the knee-jerk reactions that plagued me for so many years. And I can stop to ask myself what’s going on, before I get carried away by my impulse to flip out.
It’s that effective and that powerful. And it’s so simple to do. Exercise. Take the stairs. Walk briskly instead of ambling along. Park at the other end of the parking lot and hot-foot it to the front door of the store — even in the rain. Get out for a walk on the weekends. And make a point of doing some light calisthenics before you get into your day. It can make a difference. It will make difference. The attention you pay to this will give back to you, over and over and over again.
As Nike says, “Just do it.” Your mind will thank your body for helping your brain.
Disclaimer: This may turn out to be a clumsy post. I don’t want to insult anyone with any inappropriate references or seeming to make light of or diminish anyone’s career or calling or history of service. If I get clumsy with my terminology and come across sounding like an idiot, please accept my apologies. But I think what I’m about to say is important, so I’m going to take a shot.
I’ve been thinking a lot about what I’ve read about the movie Restrepo, a feature-length documentary that chronicles the deployment of a platoon of US soldiers in Afghanistans Korengal Valley. I’ve been thinking about one brief scene that someone described — a soldier being asked what he was going to do when he gets home and doesn’t have the constant adrenaline rush of war anymore.
He said, “I don’t know.”
See, this is the thing — with soldiers returning from the front, as well as TBI survivors who once lived fast-paced, action-packed lives. Logistically and qualitatively, there’s really no comparison between the constant life-and-death struggles of active-duty soldiers and, say, an acqusitions and mergers attorney. But biochemically, they’re much more similar to each other than to folk who aren’t bathed in a daily biochemical wash of super-amped-up stress hormones.
When you get bumped out of the front, thanks to TBI (or PTSD), what do you do?
We don’t know.
When it comes to addressing the issues of TBI/PTSD survivors who come from prolonged exposure to biochemical fight-flight extremes — especially when that exposure was in service to a larger-than-life, well-defined structure (in the case of m&a attorneys, the firm(s) handling the transactions and the rules of the game played… in the case of soldiers, the military culture and the rules of engagement). You have a very well-defined structure around you, you’re bound by that structure to follow certain rules, and the structure also defines for you what it is you’re supposed to do within very well-established parameters. And within those parameters, you participate in some of the most taxing and harrowing experiences the human system can endure. The structure, the order, the machine… it all makes it possible for you to do more than you ever dreamed you could — both for good and for ill.
It’s the highest of the highs. It’s the lowest of the lows. And over time, if your system is exposed to enough of those fluctuations without a chance to balance it out — the parasympathetic (rest and digest) nervous system gets out of practice, since it’s constantly pushed out of the way by the sympathetic (fight-flight-fake-it) nervous system — you get stuck in gear. Like the cable of your clutch goes on you when you’re in the fast lane hauling ass out of Los Angeles.
And then you get hurt. Or you get sent home. Or your tour ends.
And then what?
You get out of the hospital/rehab. You try to settle in at home. You look for something to fill the void left by the absence of your colleagues or comrades in arms. Everyone is telling you, “Relax… Take it easy… Calm down…” But the very things that kept you going all those months/years, the very things that made you who and what you ARE… well, they’re gone.
And how does a ghost relax? How does a shadow take it easy? How does a shell calm down?
Getting injured, getting hurt, getting fired/discharged… There’s more to it than just losing your place in the rank and file. You actually lose yourself. Who are you, if you aren’t doing the things you’ve strived to do, month after month, year after year? Who are you, if you don’t have that structure to work in, the rules to define you, the culture to tell you you’re needed?
This, to me, is the most debilitating aspect of TBI — and probably PTSD, too. It’s not just some hurt that needs to be healed or some biochemical imbalance that needs to be righted. It’s a crushing, diminishing, awful loss of the very essence of who you’ve become. And the rest of the “civilian” world — unless they’ve been in that life — cannot possibly understand how insulting it is when they tell you to relax, calm down, take it easy.
Who you are and what you are is about doing and being the exact opposite. Because that’s what you do. You don’t relax. You don’t calm down and mellow out. You don’t take it easy. Because you have a job to do. You have a mission to accomplish. And because you are who you are, you cannot and will not rest, till you finish the job.
So there.
Some of us need missions. We need a structure, a higher purpose, a job to do. We need someone to tell us This Is The Priority, so we can pitch in and do our part. We need to be part of something bigger (and badder) than ourselves, and lose ourselves in service. Some of us are not part of the cult of personality, but part of the brother-/sister-hood of service, whose very essence is refined and shaped by our selfless dedication to the Higher Good. We dedicate our lives and our whole selves to duty and to making a difference in the world — not for the sake of our own glory, but because that’s who we are.
And we need a mission.
Coming home — whether from the front or the hospital — or getting up after a fall, climbing out of a wrecked car, or waking up after being knocked out, we are not the same people as we were before the events that re-shaped our lives. But we still need direction and purpose. In the absence of the larger structures (which no longer have need of our broken selves), it’s up to us to find in ourselves where we want to serve, how we wish to contribute. I firmly believe that each and every one of us, no matter how damaged, has a role to play and a place to fill. If we haven’t got the coordination or the cognitive ability we had before, there are other ways we can pitch in and help out. If we haven’t got the old skills we once had, we have the ability to develop new ones, perhaps ones we never thought we’d have/need.
Once injured, once hurt, once damaged by the world we once participated so fully in, it can be all too easy to get lost in the shuffle.
But if we step up, we can make a fresh start, with a new mission, with a new way, a new dedication. We may not have the old structures around us, but we can find and/or create new ones. This is something we can do.
So searched one of my readers yesterday. Three words that say a whole lot.
My guess is that someone’s mother is starting to fade, cognitively, and she has been blowing up at them…. and they’re trying to decide what to do — to keep coming around and visiting/helping mother, or to slowly distance themself from her tirades and protect what sanity they have left in life.
One can hardly blame them.
I think it’s particularly difficult, when you’re an adult child, you have plenty of responsibilities already, and you are keenly aware that you don’t have tons of time left on the planet to just enjoy yourself. It’s hard, having a parent who’s declining. You don’t want to just “dump” them, but you also need to have a life. It’s an impossible quandary, from which no one escapes unscathed.
I haven’t been thrust into the midst of that terrible What To Do With Mother/Father quandary, just yet. And it’s a good thing. I’m just now starting to really enjoy my life. After 40-some years of confusion and some pretty tough times, I’m coming out of a long, dark tunnel into light.
About the last thing I want or need (selfishly, perhaps) is a parent in decline who is my responsibility in some way or another.
I am indeed blessed. For the time being. And I’m savoring the moments of blissful normalcy while I can.
Because you never know when something unexpectedly awful will come ’round the corner. And then the recovery starts all over again. Some kind of recovery or another. Maybe it’s physical. Neurological. Emotional. Or just plain logistical. Terrible stuff happens. We all know that. What we don’t know is whether or not we’re going to survive it, the next time.
The odd thing is, sometimes we have a much clearer view of our difficulties in advance of them, as well as afterwards. While we’re in the thick of things, we can get so focused on just dealing with what’s in front of us, we don’t realize what a big chunk the situation is biting out of us. We’re intent on survival — pure and simple. Only later, do we fully realize just what a steep price we paid for our survival. And then the post-traumatic stuff sets in, with you feeling awful and inadequate and jumpy and itchy, ready to leap out of our skin at the drop of a hat, or pick up a stick and go racing down the street threatening anyone who looks at you the wrong way.
Kind of like
mother
dementia
temper
How’s that for dysfunctional haiku?
And so our lives unfold. We value our ties with the ones we love. We see those ties unravel. And we lose it over the littlest things. In the midst of it, in the thick of it, we shore up our resolve and tell ourselves we’re Good People who mean only to Do Good, chasing our gumption with a stiff shot of the hard stuff or a strong helping of whatever rationalization fits us best. We’re so irreversibly human, so fraught with limitation and trepidation. Yet, somehow, we continue to Do Good — or at least intend to.
And we mourn the missed chances, the lost causes, the opportunities we now value but passed up before. We shed a few tears into our pillows before falling asleep, we brush the tears from our eyes as we drive home from appointments with care providers and experts whose primary purpose is to help us and our loved ones through the day. We ask for help. Or we turn offers away. We do what people do — strange, inexplicable things that somehow serve to dull the pain of daily existence.
mother
dementia
temper
None of it seems to make much sense, some days. And yet, we go on. We continue. We put one foot in front of the other. We double-tie our shoelaces so we won’t have to stop too often to re-tie them… so we don’t trip over a shoelace.
We mourn for Haiti. And Louisiana. We rue the dark schmutz on the Gulf coast of Florida. We rail against The Powers that refuse to let good-hearted citizens save sea turtles and pelicans. We watch for the inevitable lawsuits that may — just may — dispense a version of justice in this terribly unjust, benzine-fumigated world of ours.
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And part of us doesn’t blame Mother Earth for throwing all that oil up on the shores during storms and hurricanes. Because we’re the ones who loosed it from Her deep, to begin with. Part of us doesn’t blame the birds for just dying — who could hold up under that terrible dark weight? Part of us loves Tony Heyward for giving us a single figure on whom we can fixate the full brunt of our anguished disgust. Tar and feathers is for BP execs, not endangered species.
Or so we would like to think.
It’s all so fragile, isn’t it? Our connections strengthen, then fray and dissolve. The small chirping creature in the woods outside our living room window pips melodically… then starts to shriek, and then goes silent. A tree comes down and the electricity goes out, and someone slips in the dark, hits their head, loses a part of themself in the process. A certain part in a car fails, an accident happens, and the driver is injured invisibly… for a few months, till their life starts to come apart at the seams for no apparent reason.
Researchers at Emory University in Atlanta, GA, recommend that progesterone (PROG), a naturally occurring hormone found in both males and females that can protect damaged cells in the central and peripheral nervous systems, be considered a viable treatment option for traumatic brain injuries, according to a clinical perspective published in the January issue of the American Journal of Roentgenology. “Traumatic brain injury (TBI) is an important clinical problem in the United States and around the world,” said Donald G. Stein, PhD, lead author of the paper. “TBI has received more attention recently because of its high incidence among combat casualties in Iraq and Afghanistan. Current Department of Defense statistics indicated that as many as 30 percent of wounded soldiers seen at Walter Reed Army Hospital have suffered a TBI, a finding that has stimulated government interest in developing a safe and effective treatment for this complex disorder,” said Stein. read more…
The Texas Legislature directed the Texas Health and Human Services Commission (HHSC) to study the need for long-term community support and residential services for persons who have an Acquired Brain Injury (ABI) (see exact text of legislation below). Acquired Brain Injury is defined as damage to the brain that occurs after birth. Congenital disorders are not included. ABI can result from an accident or other traumatic external blow to the head as well as from a non-traumatic injury, such as a stroke, heart attack, brain tumor, infection or substance abuse.
As part of this study, HHSC’s Office of Acquired Brain Injury is conducting a survey of stakeholders that is being sent to:
• People with an acquired brain injury;
• Family members;
• Caregivers;
• Service providers;
• Advocates; and
• Other stakeholders.
The survey asks for your opinion about the most important long-term community supports and residential services for people with ABI in Texas. A list of services is included in the survey. You may choose any three or add others. The report of survey results will discuss the services and supports that receive the most votes. Remember, these services are for long-term community and residential services and supports only.
Please complete this important survey and make your voice heard by state leaders. It will take only a few minutes of your time. Your needs and opinions are important.
All responses are anonymous. No personal information will be shared.
Please complete the survey by Wednesday, February 24, 2010, by clicking on the following link:
Please forward this email to anyone in Texas concerned about brain injury services and supports. The more responses we receive, the better we can represent this important issue. Thank you for your time and participation. For information about the Texas Office of Acquired Brain Injury, visit the website at:
Office of Acquired Brain Injury
TEXAS HEALTH AND HUMAN SERVICES COMMISSION
MC 1542
4900 NORTH LAMAR BLVD
AUSTIN TX 78751
phone: 512/487-3431
fax: 512/424-6991
email: oabi@hhsc.state.tx.us
Even among the properly trained, it can be difficult to understand exactly what is going on inside an injured head. At every turn, if you present well, outside your head it is assumed that you are well, that all is well, and that all will be well.
But inside your head, there are no such guarantees.
Inside your head, nestled amongst the tens of thousands of memories of what was supposed to go one way, but went another — with or without warning — lie slumbering catastrophes, just waiting to be awoken by sudden laughter or applause…
All the screw-ups, all the mess-ups, all the misspoken words, the misunderstood directions, the confusions, the communication breakdowns, the confabulations, the failed connections… no matter how small they were, the simple fact remains that things did not go the way they should have. No matter how hard we tried, things did not work out. And there were consequences — we tried like crazy to avoid them, but it just didn’t work out. We may not remember the specific details of each minor catastrophe, but the residue of each and every one is very much a part of who and what we are. Our brains may not remember each detail, but our bodies recall very clearly the experience of being wrong or mistaken or confused all too well.
Inside your head, sandwiched between the best-laid plans and the rock-solid goals and the shining hopes and the lifegiving dreams, the condensation of nagging doubts builds up. There is no true certainty with brain injury. There may be a sense of certainty, but the reality all too often is something very different. They trickle in, these well-versed, well-founded doubts — liquid sabotage — from the pressure cracks in your system, the pressure cracks in your life, seeping in through the fissures to accumulate in the crevices in the foundation you’ve built your life upon. When the weather is warm and pleasant, all is well. But when it gets cold — a sudden snap, perhaps — the liquid expands like icy water freezing in sidewalk cracks, and it separates the pieces of your foundation like so many pieces of stone or brick or cement forced apart by sudden ice.
Outside your head, everything looks fine. Everything looks good. Until you snap. The pressure builds up too much — too little sleep, too many demands, too much long-term fatigue, too much cognitive deficit, too many questions, too much to do, too few resources left over at the end of the day to manage it all. Too much… too. And you lose it. Go off the deep end. Pitch a fit. Fly off the handle. Over what? Sometimes it’s hard to remember.
And then it hits the fan. You’re not the only one in the line of your own fire. And the others who bear the brunt may or may not be accommodating. Chances are, they’re not. And a brick pops out of the wall. A chunk of your foundation cracks off. The mortar between the stones in your carefully constructed retaining wall starts to crack and crumble.
Again.
Maybe the people you lost it around remember other times you’ve done this. Maybe they don’t. If they do remember, chances are they’ve tried to forget, tried to give you the benefit of the doubt, tried to make allowances or exceptions. Tried to give you another chance. But they keep giving you second chances, and still… it comes back to this.
Maybe the people around you don’t remember you losing it before. In which case, depending how long they’ve known you, you’re either the benefactor of their interpersonal largesse and allowed another chance or special exceptions… or you’re marked as someone who isn’t quite right and can’t quite be trusted.
Or maybe the problem isn’t anger at all. It’s not temper. It’s not tantrums. It’s not violent outbursts. It’s something much less dramatic, but all the more sinister — unreliability. Perceived flakiness. An apparent inability to do simple math. Or spell. Or use proper grammar. Perhaps it’s failure to deliver. Over-promising and under-delivering.
The last one is the most sinister of all. It makes you look like you’re either completely out of touch with reality or — worse — a liar. One slip, and you’re suspect. Another, and you’re a marked person. One more, and you’re written off. Yet another, and you’re doomed. The world can tolerate a lot of variability, but the world of work and accountability is brutal on those who fail to deliver what they promise. It’s sink or swim. Life or death. With the economy the way it is, and the global marketplace as competitive as it is, there is even less margin for error, than there was 30 years ago.
It’s not just the case for the workers of the world — also for the spouses, the friends, the family members, the community members. There’s just not that much tolerance, anymore, for those who don’t measure up. Perhaps there’s never been. But in this world we have made, the stakes are much higher. 500 years ago, you could retreat to the forest and survive. Now, nobody really remembers how to live on the land. We are much more interconnected and interdependent than ever, yet our tolerance for variations in human expression has not kept up.
We have invented a world for ourselves that has no room for many of us.
Where, then, shall we go?
Within.
It’s the only place that’s safe anymore — and that’s a relative statement, in any case. After all, within is where you store the collective memories of all your screw-ups. It’s where you wrangle with the very real recollections of your own failings, the collected experiences of your shortfall. It’s where you have to live with yourself, like it or not. It’s the one place that who you are and what you are — and are not — capable of, is very clearly known. Except when it’s not.
Within is a haven that has significant limits, to be sure.
But within, at least you have a chance to sequester the truth of yourself and your limits in their own company, and they can keep each others’ confidences in the silent corners of your mind. No one needs to know, just what a hard time you’re having these days. In fact, no one wants to know. They have their own troubles. And how they have their own troubles. Nobody likes to think others have troubles nearly as bad as their own.
Funny, how people are like that. If you step forward and ask for help, you stand a better chance of being smacked down than given the help you need. You stand a better chance of being reprimanded and chastized, than assisted, even if you ask for specific kinds of help. “Everybody has problems with something… Look at you – you’re lucky! You can still walk and talk! You still have your health! Some people have it reallybad — at least you don’t have MS or Cancer or Parkinsons or Alzheimers! Stop complaining and just live your life.”
Buried in the litany of “real” problems that other people have, there’s a common theme, a recurring chorus, that goes, “I’m in pain too, but I don’t vex the rest of creation with nagging pleas for help. If I can suck it up, you can too. Get with the program, cowboy, and just deal with it. Oh, by the way, have you paid your taxes yet?”
Looking without for assistance is a tricky thing. You may be better off, not even trying. If it’s logistics, like staying alive during a long, cold winter, then yeah – speak up. But if it’s “higher” functioning stuff like memory or fatigue or distractability or behavioral issues, chances are you’re better off keeping your own confidences.
You may wish to keep the bad news about the havoc in your life to yourself. I do. And it’s working out better for me, than when I told people the whole truth about my situation. I’ve learned to keep my mouth shut about it, for the rest of the world simply does not, cannot, and will not understand. Most people have their own troubles — ironically, much of it their own making, due (among other things) to poor time management practices, crappy sleep hygiene, and bad living habits. It’s not neurological with them. It’s either mental laziness, lack of character, or addiction to drama. They create their own overwhelm, and then they liken their situation to mine.
Ironic, to say the least. I could teach them a thing or two about time management and improving performance. The fact that I can get as much done as I do, despite the limits I’m dealing with, says a lot about how-well designed and oiled the “machine” of my life is. I should bottle my system and sell it. I’d be rich, if I could. But most folks I know are heavily invested in their self-created drama, they’re getting by okay, in spite of their chaos, and they don’t see anything wrong with it. Me trying to get help from them to fix something they don’t think is a problem — somethign that they think is just how life is — when I know differently — is like trying to outlaw drinking on a cruise ship.
Yes, most folks have havoc enough — self-created as it is. And they can’t for the life of themselves fathom why others (whom they assume have self-created their own havoc, just as they have), are whining about needing extra help getting on with their lives.
Outside the mind, the odds of getting your needs met as a traumatic brain injury survivor (or as a significant other of one) are slim to none. Money is tight, after all. Only the most severe and obvious cases stand much of a chance of qualifying for help.
But there’s always within… When you keep your own confidences and you hold your own counsel in the privacy of your own mind, you have a chance to make right the very things you know for a fact are wrong. You can work with your demons on your own terms, in your own time, without the messy meddling of others who may say they understand, but really don’t. Within, you have a chance — if you know yourself and your situation for what they truly are — to negotiate and navigate and accommodate and mediate… to adjust and tweak and compensate. And just get on with your life.
Outside, there’s precious little that anyone else can do for you. Sad, but unfortunately generally true. People don’t know shit about brain injury. Nor do they want to. They’ll glance at the billboards and skim over the ads in the magazine, and get on with their busy, havoc-filled lives. And never give it a second thought.
But within… there you have a chance. Only you know just how messed up things can get. And only you can identify exactly what is wrong. Only you can know for sure if the results are what you planned. The rest of the world thinks you meant to say or do such-and-such. Only you know the truth — that what you did or said was anything but what you planned and intended.
Havoc… catastrophe… conundrum… confusion… Screw-ups… Failure… teetering on the brink of collapse…
Broken Brain - Brilliant Mind 