Telling stories

I’ve been coming across a lot of references people are making to telling stories… what stories we tell ourselves, what stories others tell us… what stories we want our lives to embody.

Once upon a time, I was big into stories. I wrote constantly, and much of what I wrote was stories — fiction, non-fiction… just accounts that were meaningful to me. Sometimes others found them meaningful — when I showed them to others. Most of the time, I kept them to myself. They were my stories, and I didn’t want  anyone else meddling in them.

I continue to write, but now I share my stories. I do a whole lot more writing online, than in my onetime journals, and it’s good. It’s a good development. Looking  back at all my past journals, I’m amazed at how circular I was — rehashing the same topics over and over and over and over and… well, you get the point.

I have that problem a lot less, now that I’m putting what I write out in public.

Keeps me honest.

It’s good for me.

And I’ve been thinking it might be good for me to do more of this writing — along different lines. I’ve written books before, and it’s strangely easy for me to collect several hundred pages of words that hang together well. I’ve written under pseudonyms, to keep my writing identity safe and sound, and the material I’ve written has gotten good reviews from some. And I think it might be time for me to write about growing up with TBI. I’ve been looking around some, and it doesn’t appear that there’s much literature out there about kids with head injuries — especially from the point of view of the child.

The books that I have come across about kids with TBI have been either non-fiction (I did find a really good one, the other week), or they’re biographical accounts/personal stories from the point of view of parents. Not much — that I’ve found — has been written by people who grew up with TBI.

Could be, people just want to put it all behind them and forget about it. I could see that. I feel that way, myself, sometimes. But then I think about all the parents and the kids out there who have experienced TBI — especially concussions in sports, which is so common — and I think, “Maybe this is something I need to NOT put behind me. Maybe it’s something I need to put out there in front of me.”

I’ve been feeling incredibly emotional, lately. My life is undergoing some significant changes, with my home life shifting and taking on new aspects of independence for both my spouse and me, and my job not being the most wonderful experience in the world. I’ve been waking up regularly at 3 a.m., with this nagging sense that I need to make some changes… just what those changes are, exactly, I’m not sure.

I know what I would like to do — have a lot more freedom to move and breathe and travel and enjoy my life (I haven’t had a real vacation in quite some time). I would really like to devote more of my time to this work of educating folks about TBI, writing about my life, informing people of the important details, helping survivors better understand themselves and manage their issues, and reassuring worried parents and spouses and friends that things don’t have to end badly. There is hope.

Yes, I know what I would like to do. I’m just not certain how to get there.

But writing this book will be a start. Yes, I think I’ll start here.

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Which mistakes do I keep?

Creativity is allowing yourself to make mistakes. Art is knowing which ones to keep. – Scott Adams

I just came across this quote, while poking around various blogs. I had intended to write something else… but I forgot what it was, so I’m going to go with this idea.

On the loooooooong road to mtbi recovery (which seems like it is never over), I have made plenty of mistakes along the way. It sorta kinda goes with the territory. I mean to say one thing, but then I say another. I mean to do one thing, but then I do another. I mean to accomplish one thing, but then I mess it up and it doesn’t get done. Along the way, it’s easy to get turned around and confused and lose my place. I do it all the time.

So, why am I not worse off in my life? Okay, I admit, my life is not a template of the American Ideal. I don’t have the perfect spouse and perfect 2.4 kids in a perfect house with perfect cars with a perfect job and a perfectly fat wallet. I don’t drive a Prius or a Hummer or a pickup truck or a motorcycle or any other vehicle that would indicate I am a Person Worth Knowing. I don’t have a closet full of tailored clothes with different well-polished shoes for every occasion. I don’t have many of the signs of success that one would expect from someone who is Doing Extremely Well For Themself, and frankly, some days it’s just a constant struggle to get by.

But in spite of all my struggles and screw-ups and messes I’ve made, I’m doing okay. I’m happy, I have love in my life, and I like what I do for a living. In spite of all the jobs I’ve totally messed up, the situations I’ve blown to hell, the relationships I’ve trashed, the money I’ve lost, I’m still standing. And my life — oddly enough — keeps getting better.

Why?

I think it’s because I don’t let the screw-ups keep me from pursuing my version of success. I learn from my mistakes — actively, intentionally, regularly — and since I make lots of mistakes, I tend to learn a lot. And since I’m so friggin’ tenacious and indomitable (bad days notwithstanding), I never stop, till I get where I’m going. Sometimes it takes an awfully long time for me to get where I want to go, but eventually, I get there… even if my definition of “there” changes along the way.

For years, I’ve focused on what I call “the art of living” — making my life into an intentional expression of my individuality, rather than abiding by some standard-issue cookie-cutter stereotype. Long before I knew why I couldn’t fit into the “norm”, I realized it wasn’t a good fit for me, and I resolved to find other, better ways to live my life, in spite of my oddness. I’ve made a point of not forcing myself into a narrow definition of success, and I’ve really worked at taking what good I could find from all the wreckage of my life around me.

There have been intense internal conflicts, to be sure, and I’ve been lower than low many, many times. But when the dust has settled, time after time, I’ve always managed to figure out a way to use what I learned for my benefit.

When I was younger, I was bound and determined to be a writer — to be the best writer of my generation — and I channeled all my energies into being open to the full range of what life had to offer me. I didn’t care so much about achieving and accomplishing and being The Best in others’ eyes. It was more about being the best in my own eyes. I kept open to the full range of life experience. I didn’t worry so much about whether or not things turned out the way I’d planned. For me, it was all about the experience. Learning what it meant to be human, so I could write believable stories about believable characters.

Of course, a whole bunch of mild TBIs kind of put a damper on my literary aspirations – it’s difficult to get published, when you can’t figure out how to communicate with publishers and editors and you alienate just about everybody who reaches out to help you without understanding how or why you’re doing it. And I’ve had to seek out alternative ways of getting published, essentially letting go of that childhood dream. I realize now, it’s probably not as plausible as I once thought it was.

But my orientation towards life remains the same — it’s an experience to be had, not a task to be completed. The full range of what life throws at us is a smorgasbord of sensations, a veritable feast for all five senses — six, if you count the one you can’t put your finger on. All of life is this amazing cornucopia of events to be lived, experiences to be had, lessons to be learned. For me, it’s less about specific outcomes, and more about the quality of the experiences I’m having. Quality of life… that builds quality of soul… and character.

I came across an interesting blog post over at Daily Strength today:
How Important is Resiliency in Trauma Recovery?

It talks about how folks in the mental health field used to think that once traumatic damage is done to a person, they’re damaged for good. But that ain’t necessarily so. A person who is abused as a child isn’t necessarily going to be either an abuser or a perpetual victim as an adult. Human resiliency also plays a role, and people can — and do — overcome nasty crap all the time.

Given the course of human history, I have to say I agree. If everyone who got beaten up and mistreated as a child turned out to be either a perpetual victim or a perpetrator for the rest of their lives, I think we’d all be dead by now. There would be no one left, for all the killers would have killed the victims… and then wiped each other out.

No… that hasn’t happened (yet).

Yes… there’s more to the story than our past.

And there’s more to screwing up than making a mess of things.

Sometimes, the mess can be quite instructive.

Sometimes, a royally mucked up situation can be even more valuable than total success all the time.

Which, for someone like me, means that my chances of ultimate success are actually better than for someone who gets things right all the time.

Think about it —

If

as Winston Churchill said, “Success is the ability to go from one failure to another with no loss of enthusiasm,”

and

I have been uniquely shaped to not only go from one failure to another, but also keep going, keep diving in, keep forging ahead, no matter what (due at least in part to my head-injury-diminished aversion to risk and danger, as well as my intensely stubborn streak)

then

it stands to reason that I am uniquely positioned to have a very successful life, despite my injuries, despite my deficits, despite my history, despite my muck-ups.

In fact, one might say that my injuries and deficits even contribute to my success.

Not that I’m saying that mild traumatic brain injury is a ticket to the Good Life. Far from it. But if I can figure out a way to make it work for me sometimes, instead of constantly against me, then things don’t necessarily have to turn out badly.

Ultimately, getting back to Scott Adams’ quote above, creativity is not about never making mistakes, it’s about allowing myself to make lots of them — and art is about being able to tell which “mistakes” are worth keeping.

Personally, I’d rather have an artful life than a carefully checked-off list of t0-do items.

But that’s just me.

My books have arrived from the library!

I’m really stoked. I finally managed to find a library copy of George Prigatano’s Neuropsychological Rehabilitation After Brain Injury and Prigatano & Schacter’s Awareness of Deficit After Brain Injury.

I’m sure it sounds odd for me to be so excited about getting them from the library, but these are books I’ve been wanting to read for some time. I first came across George Prigatano a little over a year ago, when I was researching brain injury and wondering why in heaven’s name I had never realized there was something “up” with me. I mean, I had a lot of problems when I was a kid and throughout my adulthood. Problems with memory, problems with mood issues, problems with keeping track of stuff, problems with temper, problems with freaking out over every little thing, problems with money management… I get tired just thinking about it all.

I should have realized a long time ago, that all those problems couldn’t possibly have been due to everyone/everything else. Something had to be “up” with me. But no… my broken brain was convinced it was everybody else, not me, that had the problem(s).

Anyway, now I’ve got the books on loan for three weeks — and the past-due fees are high, so I’d better get reading. I’m sure it’s considered a little “blasphemous” and presumptuous for me to be reading up on cognitive rehabilitation and advanced topics that are supposed to be beyond this layman’s brain, but I don’t really care what other people have to say about it. I have access to the information, and even if I don’t understand everything, at least I’m going to check it out.

My wrists are doing a little better. I’ve worked almost 30 hours in the last 2 days, much of that time spent typing, so I still have more resting I need to do. But that will come. Right now, I want to celebrate.

Celebrate life. Celebrate recovery. Celebrate cognitive rehabilitation. I saw my “neuroshrink” today, and we actually had a really good session. I was talking about different events of my past, and I actually got a laugh out of them. A good, hearty, spontaneous laugh, too. In the past, they’ve been kind of reserved and distant, like they were checking me out… not sure if they were going to keep working with me. But today was a good session.

They told me, in the course of our 50 minutes, that considering everything that’s happened to me, my life is a great triumph, not a tragedy. And yes, it’s true! My life is a tremendous triumph, and I’m feeling really grateful tonight that I’ve been able to do as well as I have.

How I’ve been able to do this well — bounce back from multiple mild tbi’s, including sports concussions and falls and assaults and car accidents, and build a life that’s full of activity and love and productivity and, well, happiness… I’m still trying to figure it out.

But if I had to chalk it up to anything, I’d say it’s just stick-to-it-ive-ness. Never giving up. Being tenacious. Stubborn. Hard-headed in the right ways. Trying and trying and trying some more. And never settling for less than I want — and deserve.

Just keeping going… in some ways, that’s the best rehabilitation of all. None of the other approaches actually work that well over the long term, if you don’t have this as the foundation.

But still, tenacity aside, it’ll be good to check out these books. It’ll be good to have some input that comes from outside my own head and immediate experience.

I’m also looking forward to reading more writing from George Prigatano. I have been a huge fan of his for quite some time, and what I’ve read from him I’ve really enjoyed. It might sound odd to talk that way about a neurologist, but everybody’s partial to something. Some folks are into Japanese art, some are into road bikes, some are into Turkish ceramics, some are into Dice-K, some are into the Cavs. I’m into neuroscience. Particularly cognitive rehabilitation after brain injury, and all the fascinating aspects of life that go with it.

And I do mean “fascinating”. The brain really is the final frontier, and despite the fact that everyone has one and we all love to talk about ourselves, precious few of us — scientists and doctors, included — seem inclined to talk about our brains and the way they impact our lives. It’s as though there’s this huge curtain drawn between our white/gray matter and the rest of us… a kind of holy-of-holies veil that keeps us from approaching the Ineffable Massiveness of what sits atop our shoulders and between our ears. I can’t account for the reticence, in general. It’s like everyone is running around talking about everything except their brains… like we’re trying to keep our minds off it.

Or maybe it’s just so close to home that it makes people waaaaay too nervous to approach, and anyway, we’re taught that unless we have degrees and qualifications, who are we to discuss such weighty matters? It puzzles me. We all have brains. We all love to obsess about ourselves and our human conditions. Yet we’ll invest countless hours in dissecting the life choices of Octomom, while remaining oblivious to the Real Drama that takes place inside our skulls, each moment of every day.

I can’t account for it. But it’s getting late, I need to rest, and there will be more time tomorrow to ponder these imponderables. And read the words of  George Prigatano.

A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.

Lost to TBI: My Lifelong Love of Reading Fiction

One of the things I have progressively lost over the past several years since my tbi at Thanksgiving, 2004, is something I never, ever thought I’d part with: my love of reading fiction.

I grew up reading and loving to read. My parents were — and still are — avid readers. Especially fiction. My mom leads the way with fiction, but my dad is usually not far behind. He’s more partial to personal accounts of adventure and exploration, but he still goes for fiction at times — preferably with a moral to it. Mom doesn’t care whether there’s a moral or not. So long as it’s a book, she’s happy.

So was I. I always shared my parents’ love of books, especially fiction. I grew up with my nose buried in a book, and I actually learned more about life and language and what it means to be human from books than from real people and events. I adored fantasy fiction. Stories about ordinary people in extra-ordinary conditions. Short stories, long stories… novellas and novels and epics (I used to love James Michener, especially). I would tear through books, when I was kid, like a starving kid with a sack full of Halloween candy. Many of my favorite books I’ve read over and over and over again, not caring if I recognized the plot and knew how it ended. I just loved to read!

Until the past few years, that is. Since my fall down the stairs in 2004, this has changed dramatically.

Now reading just about anything that’s over 10 pages is a chore. It’s difficult for me to do. What was once effortless when I was younger, has become very time-consuming and resource-intensive. I really have to work at following the sentences and words and remembering, from one chapter to the next, what’s happening.

It’s disheartening and frustrating, and it embarrasses me. It didn’t used to be like this. But now it is.

I try to carve out time for reading, but I always seem to get pulled off to something else. I get distracted and I cannot finish what I start. Or, I try to read while my partner is watching t.v.,  but I cannot focus, and I get very upset with myself.

I check out lots of books from the library (on impulse) with every intention of reading them, but I only get part-way into them, before I either get distracted or I get overwhelmed with the information, and I have to step away

I tend to forget I have a certain book on hand, then I’ll remember that I have it and get excited and start to read it… but I won’t finish it, because I get overwhelmed with the details, I lose track of what’s going on, and the disorientation ruins whatever soothing effect the book might have for me.

My friends and family, knowing the old me, give me books for the holidays and my birthday, but I can’t get through them. I feel awful because they really want to give me presents I’ll enjoy, and they want to share their experiences with the books with me, but I can’t manage to finish them, or even read enough to hold a decent conversation with them. I might enjoy having the books they give me, but I often cannot seem to bring myself to read – it’s too frustrating and disheartening. My home and my study are full of books I’ve only partly read.

Nowadays, it’s very seldom that I’ll actually finish a book I start, whether it’s fiction or non-fiction. Every once in a while, I’ll manage to complete a non-fiction book about something that affects me personally. Fiction is pretty much out of the question for me. I become highly agitated by the characters’ experiences and choices, and it’s uncomfortable for me to be subjected to their drama. I become impatient with them and cannot sustain an interest in anything that happens to them. Non-fiction gets my juices flowing, but I often get turned around and can’t keep the facts straight, and I end up confused and frustrated and down on myself. Even topics I used to love and authors I used to read voraciously, hold my attention for only so long.

Because my attention tends to wander (if I lose interest or I lose my “info buzz”), I try to stick with higher level research, since it holds my attention and really stimulates me. I do a lot of research on the internet – medical, especially. With the world wide web, I can bookmark (or save) the pages I’m reading and come back to them later. I can print them, too, for future reference, which is important to me. Although, after I print them out, I often forget that I have them, and I’ll end up printing out multiple copies of the same article that really excited me when I first found it. My hard drive is my saving grace. Having copies on my computer reminds me where I’ve been and what I’ve been reading, and when my bookmarks get to be too much to sort through, I can look at my carefully organized hard drive folders and see what I’ve already got in there. Then I can make a note that I don’t need to save another copy.

I still love to read… some things, anyway. I stick more with magazine articles and research papers and web pages. And even with them, I often need to go back and re-read them. It’s not that I don’t understand them. I do! I just get the facts and figures turned around, and I need to refresh my memory and make sure I understand what’s in them.

This is a huge loss for me. Or, rather, it would be if it still meant something to me. Nowadays, I’m happy just to get through the day without a major catastrophe. Reading — which used to be a necessity I could not survive without — has become a luxury for my leisure time… whenever I have it.

Impulse Control 101

In the past months, I’ve noticed a pattern of behavior that I never really thought about before –my tendency to check out library books en masse when I’m getting over-tired, fatigued, and overwhelmed.

I also tend to start projects, just because they seem interesting to me in the moment and they get my  mind off my troubles… not because I actually plan to follow through and complete them.

I first noticed this for real, in February of this year. From my self-assessment form I filled on on February 6, 2008, I wrote:

I’m drawn to library books, and impulsively check them out, loading up on lots of them. I also impulsively start on a lot of research projects and other projects.

The intensity of my desire to check out lots of library books or start projects was about 3/10 that day, and the impact of it was 7/10, because while the intensity wasn’t that great, it still was very disruptive to my regular life.

From my sheet:

I went to the library today, but I just looked through some of them, rather than checking them out. I returned a book I wasn’t reading. I also sat down and looked at what projects I can realistically complete, and which ones are just interesting/compelling to me at this time.

I managed to get rid of a book, rather than bringing in more.

Now, it might not seem like a huge deal, but this was a big revelation for me. Here, all this time, I had been thinking that I was studying and doing things that would ultimately bear fruit and enrich my life, but it was really just to distract myself and soothe my intense emotions that were coming up because I was fatigued, and I was too tired to realized that I was fatigued.

This is one of the issues of self-awareness that I often face — I won’t realize till later that what I’m doing is not really productive, and I’m actually doing it for a very different reason than what I tell myself.

Discovering this has, since last February, made it possible for me to not only identify the things that I am really interested in doing, because they are important, but also to pace myself and not drive myself so frantically, just because I’m fatigued, and I don’t know it.

Well, as long as no one is getting hurt, checking out library books isn’t the worst way to deal with my stress. But a long nap would be more constructive.

Speaking of which, I am tired. Time for my nap.

My mission for this blog – and our veterans

Well, Veternan’s Day came and went without my blogging about it, and I regret that.

In truth, I was all caught up in my own pity-pot, feeling sorry for myself and all the difficulties I’ve been having, lately. I’ve been dealing with some unexpected health issues, and I’ve been tired, so I let that get the best of me.

To all the brave wounded warrriors and able-bodied veterans and active soldiers of our great nation, the United States of America, I offer my most sincere apologies.

And I offer you my thanks and deepest gratitude. There are no words to express how much I value your commitment and valor and tireless sense of duty.

I must  — we must all — never forget that no matter what our difficulties in this amazing country of ours, countless committed, courageous individuals have made tremendous sacrifices of life and limb and mind and body and heart and soul to let us all have those difficulties in the protection and safety of a country where we can actually turn things around — both for ourselves and others.

This is America. There is no end to our story.

That being said, I am renewing my commitment to this blog, especially for the sake of our soldiers. In the course of my life, those who have been kindest and most courteous and most helpful to me, have been either active or former members of the armed services. The co-workers who most quickly went to bat for me, when I was down, were former soldiers. The colleagues who held their own the best and worked with me most closely as vital team members, were often from a military background. The most open-hearted and dignified and courteous and considerate co-workers I’ve had, hailed from the Service.

My life has been personally enriched by these individuals, whom I’ve been honored to work with.

Now, as so many return to this civilian life and struggle with the aftermath of blasts and head injuries and other neurological issues that are all too seldom recognized, diagnosed, and properly treated, I must do something. As a long-term multiple TBI survivor. As someone who knows what it’s like to not have anyone understand why you’re having such a hard time at such “simple” things. As someone who knows from personal experience that it is possible to survive hidden injuries, it is possible to live a good life even if your brain doesn’t work right, and it is possible to give and receive love and support in the world and have a future… even if the rest of the world doesn’t believe you do. What do they know, anyway?

I can’t do nearly as much as I’d like, but I can do this thing called, talk about my life. And so I shall. Because the men and women who make the ultimate sacrifice for us, deserve far more than they’re receiving — and that includes information.

So, if you’re an active duty soldier or a veteran or you live with or love someone who is, I offer this blog to you in hopes that you can see past the darkness that may surround you and see there is light ahead. It may be a ways off, and it may not be very visible right now, but it is there.

I wouldn’t be here, if it weren’t.