Getting a grip on my fatigue

As much as I hate to admit it, I’m tired. Really tired. I hate being tired. And the odd thing is, the more tired I am, the harder it can be for me to see that I am.

I tend to just drive myself — the more tired I am, the harder I push — and I end up getting in over my head, taking on all sorts of projects, writing, drawing, painting, doing-doing-doing…

It’s just crazy.

Over the past year, this really hit home with me, as I looked through all my notebooks for what I’d been doing with myself, and to see if there were any indicators that something was not quite right with me, when I thought it was. What I found were pages and pages and pages of notes about projects I wanted to start and work on… most of which I never finished, and many of which I completely forgot about, when I got distracted and started doing other things. I literally completely forgot about a bunch of projects I’d started that were intense burning desires with me, when I started.

Then all of a sudden, I went off and did something else, and I never came back to the projects.

Now, someone might say that it sounds like ADD, but it feels a whole lot more extreme to me. It really does. It’s not simple distraction. It’s having something you once loved and were 100% devoted to… simply cease to exist in your mind. It’s just dropping something you have hundreds of hours invested in and wandering away to do something else, and never, ever coming back to your original plan. It’s misplacing a notebook (or putting it somewhere you cannot see it) and experiencing life as though that notebook and that plan had never even existed.

This is something far deeper and more extreme than ADD. It’s got to be.

It’s sleep-walking through life because I am so worn out and exhausted by all the activity going on in my mind that I cannot think clearly… and I don’t realize I’m not thinking clearly, because I’m way too tired to grasp that fact. It’s never seeing the whole picture, because in the process of pushing yourself too far, too fast, too hard, you’ve shattered the image and are working off various little pieces of the whole, never fully aware that there is more to the whole than what you’re able to see.

It’s exhaustion-driven over-achievement… that ultimately goes nowhere.

Fortunately, I have (slowly but surely) come to realize the impact of fatigue/exhaustion/busy-ness on my life and productivity. And I’ve thankfully come to realize that one of the prime indicators that I’m intensely fatigued, is me thinking that I’m not at all fatigued… I’m just fine, thank you!… mistaking my agitation for energy… and doing way too much. I’ve come to realize that my agitation is not necessarily positive energy… it’s not necessarily productive drive… and it may actually be a fear-driven gut instinct to avoid the innermost anxieties that haunt and taunt me, so I don’t have to admit there  is something not quite right in my head.

It’s a physical phenomenon, as well as a mental and emotional one. The drive is a physically palpable thing… and the true fatigue underlying it is really well-masked by… fatigue.

What saves my ass, is my self-assessments. i have my list of things that I ask myself objectively, if they’re going on with me. Am I tired? Am I anxious? Am I agitated? Am I excitable? If I am answering objectively “yes” to these… and “I’m busier than usual” — I can say, “Hey, I must be fatigued!” and it sets off alarms with me. It makes me step back for a moment and check in with myself and see if I’m getting myself in any hot water, due to my over-activity. It gives me permission to admit that I’m pushing myself too hard. It gives me permission to slow down. To stop.

And then I can rest.

It’s the weirdest thing, that… but typical for my TBI experience. My body reacts to its deficits by overcompensating and telling itself it’s doing great. My brain has been altered in ways that cause it to think it hasn’t been altered at all — Adventures in Anosognosia!!!

Ha. Well, as long as I keep a sense of humor, I guess I’ll be okay. Really okay. After all, laughter oxygenates the blood and brain, so that can only help.

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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.

What happened in the field that day

Here’s what I remember:

I was about 8 years old and I was playing up at a field near my family’s house. I was with my younger sibling. The field lay right between two different neighborhoods, and we never went into the other neighborhood by ourselves. We rarely went there at all, period. We were playing about 50-100 feet from the entrance on our side of the field. The line of garages that flanked the alley on the other side of the field were behind us, and we were facing the direction that our one-way street went.

The field was bounded on the other side by a high (maybe 20-foot) chain link fence, and our side was the only “real” entrance to the area.

My sibling and I were there by ourselves for a little while, then two kids appeared on the other side of the field. They crawled under the bottom edge of the fence, slipping through a depression in the ground and looked over at us.

We looked over at them — I’m not sure if we called over to them and said hello. I’m not sure if we even acknowledged their presence.  I suspect we didn’t. The kids weren’t supposed to be there — they had crawled under a fence that was built to keep them out, after all. As I recall, we decided to mind our own business and keep playing.

The kids called over to us a couple of times, but we ignored them and just kept playing. Then they started yelling at us — calling us names. We didn’t respond, and after a while they started throwing rocks at us.

At first the rocks didn’t fall very close to us. It was a bright afternoon, and we wanted to play. We decided we were going to stay put. My sibling wanted to go home and pulled at me to go back home. But I said we needed to stay. Or maybe I just thought that, and my sibling just went along with me. Our dad was really into standing your ground and not backing down from your position, if you were threatened, and I wanted to make my dad proud of me and not give in to bullies. I remember the thought going through my head, that we needed to stand our ground and not just run away.

Several rocks fell closer and closer to us. I think the other kids threw 3 or 4 rocks before they got close. While they were throwing the rocks at us, I remember them laughing and urging each other to get closer. I remember focusing on just ignoring them and not being intimidated by them. It didn’t occur to me that I could be hurt — or maybe I didn’t care?

After a number of times of trying to hit us, they succeeded. I remember the distant feeling of a rock hitting my head — then everything went dark.

The next thing I remember, was looking up to see my sibling sitting beside me, crying. They hovered over me, tears streaming down their face, looking terrified.

I remember being really dazed and foggy as I came to. But I did finally know we needed to go home. The kids on the other side of the field were laughing and cheering that they’d hit me, and when we left the field they were jeering at us. I remember feeling like I’d failed, like I’d given in to being bullied, and I was really disappointed with myself.

I recall being wobbly and woozy on the way home, and my sibling was very upset and crying the whole way there. I was embarrassed by the display of emotion. I wanted to be stoic and take it like a grown-up. I didn’t want to be injured. I didn’t want to be woozy. I didn’t want to be wobbly. And I certainly didn’t want to cry.

When we got home, I remember my sibling telling our mom and dad what had happened. I was embarrassed that I’d been hurt and needed attention, and I was upset that I worried them. I remember Dad telling me to lie down on the couch, and he looked at my head — I don’t remember bleeding — but I recall that I did have a huge lump on my head.

The bump on my head was above my hairline, which made it difficult for my mom and dad to see where I was hurt. The bump was pretty prominent, and they got some ice to put on it, which hurt, because the edges of the ice cubes were hard and felt sharp. I really just wanted to not attract attention and not be fussed over. I just wanted the whole experience to go away, so  wouldn’t worry everyone. My sibling was so upset and crying, our mom had to take them out of the room and get them away from me.

My parents called a friend of theirs who was a registered nurse, and she told them to get a flashlight and check my eyes for any dilation. I seem to remember something about them not being sure if my pupils were dilated or not, but in any case, they had me lie on my left side, facing the back of the couch, and put ice on the bump.

I remember I was so tired, and I wanted to sleep, but my dad made sure I stayed awake. I remember him looking in my eyes several times to see if I had a concussion, and both my parents discussed whether or not I should go to the hospital. If I remember correctly, my dad said he didn’t think I had a concussion, so they didn’t take me.

Things were very foggy for me, after that. And I recall not being allowed to play much, in the coming days.

It wasn’t long after that, that I noticed that the moon was double, when I looked up at it, at night. When I told my parents this, they were alarmed and took me to the eye doctor.

Wrong doctor, I think…

Lost to TBI: Enjoying Going to the Beach

I used to love to go to the beach, but in the past few years, I’ve come to dread it. Whereas I used to just race across the sand and dive into the water, I now become highly agitated and cannot relax. I don’t feel comfortable doing anything with abandon. And I dread walking near other people, attracting their attention, or playing in the water in public.

If the beach is empty, it’s one thing. But when the weather is beautiful, chances are, I’m going to be surrounded by people, which I no longer tolerate well. I get very uptight when there are a lot of people around. The conversation and noise distract me and I can’t relax, having to constantly filter out the sounds of other people’s conversations and music and arguments and barking dogs and… whatever. I also worry about being approached by people and not knowing how to handle myself — saying the wrong thing, doing something stupid, interacting with their dog(s) in the wrong way. I worry about looking the wrong way and having people think I’m angry or aggressive or hostile.

I’ve become deeply self-conscious about my appearance. I feel like I’m too pale or too lean or too lanky or too flabby or too… something that other people will notice unfavorably. I sometimes actually forget how I look, and I can end up walking around with bits of clothing or underwear or hanging out, haing my buttons being unevenly buttoned, or looking otherwise disheveled. And I won’t find out till it’s too late. I worry that this will happen to me on the beach. I worry that I’ll meet and talk with someone and I’ll make a fool of myself, and then I’ll see them in town later on, and I’ll be embarrassed by my behavior or my looks. It’s easier to just keep away from people, period.

I’m also nervous about going in the water — it’s very challenging for me. Whereas once, I used to just dive in and splash around, now I have to really focus and concentrate on the movement of the waves. Putting my head under water scares me, and I need to force myself to do it. Once I do, I feel better, and I can relax a little bit, but just getting my head under the water is a struggle at times.

The open space of a beach makes me nervous, as I don’t feel like I can manage my surroundings. I dread being out in the open, and I prefer to be in an enclosed area, where I know where I can hide or duck out of sight.

I feel much better when I can find a “sun trap” to hide away in. It gives me a break from the social anxiety of not knowing how I’ll (re)act/interact around other people, when I get too stressed. If I’m out in the open long enough, eventually I do get very stressed. And I either shut down or I melt down. Neither one is very pleasant for people with me.

It’s embarrassing and mortifying and I hate that I can’t deal with something as simple as going to the beach, as a 40-something grown individual who has always loved the ocean, the beach, and the feel of sand between my toes at sunset.

I fucking hate it.

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.

Making the most of my self-assessments

I’ve been doing self-assessments on a fairly regular basis, for nearly a year, now. I think the first that I started really digging in around this past February (2008), making notes about what’s been going on with me. It’s been pretty enlightening, especially considering that I had no clue to what extent my issues affected me… until I started keeping objective track.

I haven’t done the best job of staying current with my notes, but I think I’ve collected information that I can use, at present and on down the line.  I’ve resolved to do a better job, moving forward. Even if I just take a few notes at a time, that’s helpful. As long as I have it in a format that I can put with other notes. One of the issues is that I sometimes make handwritten notes, and other times I type them on a computer, into a spreadsheet or a document.

I have been trying to figure out a good way to make use of the notes I do have, so all this experience doesn’t just go to waste. I think I’m getting to a place where I can start collecting my materials and comparing my notes over time, so I can see if I’ve made any progress.

I think I have. I can tell the difference just in the past six months. People I used to annoy to no end have told me I am more communicative with them, and I make more of an effort to deal productively with them, than I did before — when I thought I was fine, but all indicators pointed to me having cognitive/behavioral issues I needed to deal with.

Collecting all my notes and looking at them, I get a little overwhelmed and agitated — angry, too — that I’ve got so much information in so many different places, and that I have to work so hard to organize it all and make sense of it. It upsets me that I’m so alone in all this — that I haven’t been able to communicate well enough with doctors and caregivers to convey the depth of my issues… that I haven’t even known how much help I really need, till lately… that even when I am able to communicate with people, their dashed hopes (about who and what I am and what my personality and life are really like) just get in the way and keep them from being really objective with me… that even if I did manage to communicate effectively with doctors and caregivers, due to recent cutbacks in funding, the chances of me getting help are even less than they were a year ago. After all, I’ve only had “mild” traumatic brain injuries, and I’m still employed, still have my house, still have my primary relationship more intact than many others (even those who haven’t sustained tbi’s)… so I need to step back and let the people with the *real* problems get access to the services they need.

And it’s true, really. I haven’t sacrificed life and limb for my nation. I haven’t had my skull smashed or pierced by a foreign object. I haven’t been in a coma. I haven’t been in the hospital. I haven’t had any medical diagnoses of tbi, because the people around me could never see that I needed help, and I even declined help when it was suggested. I haven’t sustained a terrible, life-threatening, near-disastrous, bloody open head wound that put me out of commission for weeks and months and required me to learn to walk and talk again.

I have been a lot more lucky than that. A whole lot.

But I still need help. And I have to find it somewhere. All the cumulative injuries over the course of my relatively short life have left traces – however faint – of their impact. From mood issues to communication issues. From sensory issues to behavioral issues. From my volatile temper to my willingness to just sit motionless for extended periods of time, doing and thinking absolutely nothing. I still have a long line of jobs that I couldn’t manage to hang onto — some of which I actively or involuntarily sabotaged, when the stress got to be too much. I still have the wreckage of plenty of failed friendships and people I’ve alienated without knowing what I was doing at the time, to show for my injuries.

I still have issues, and I need to deal with them, for the sake of my loved ones, friends, co-workers, home state, and country. I owe it to everyone to learn to cope with these issues as well as humanly possible, even if I cannot get “professional help” or insight and input by experts. Even if the social system is more than happy to let me fall through the cracks, I cannot — and will not — allow myself to go down easily.

I’ve got issues, so I guess I’ll have to address them myself.

I know it’s not “what the doctor ordered” for my condition. I know it’s fraught with issues and pitfalls and danger of just screwing everything up. But my doctor doesn’t really have time for me. None of my doctors really have time for me. Nor does my therapist. Nor does my neuropsychologist. Nor does the system. Nobody really has time for me — and I need a lot of time. It takes me a while to figure things out well enough to put them into words. And then it takes more time for me to work up the nerve to say the words. And then it takes more time for me to clarify what I’ve just said, because people often don’t understand me the first time around. Then it takes me more time to listen and understand their answers.

It just takes too much time for me to get my ideas across and be sure that people understand me. It takes a lot more time than anybody seems willing to give. But I’m absolutely not willing to let myself wither and die, waiting in the wings for them to notice me and take time out of their busy schedules to help me.

So, that leaves me with no alternative than to take matters into my own hands and address my issues (which I cannot seem to get across to others) in the best way possible. I know doctors look askance at this. I know this makes professional experts suspicious. Self-diagnosis is problematic. A proper course of rehabilitation should probably be put together by a qualified, certified individual with plenty of education behind them. And accurate measurements of my progress might not even be possible, coming from me. After all, I’ve got a history of brain injury.

But no one has the time to spare me — not the kind of time I need — so what else can I do? Just give up? Just take a ticket and wait in line for the next available expert, who’s probably all tuckered out from tending to the TRULY wounded? Sit around and wait to be noticed? Make a stink and force people to notice me? Pitch a fit, hire a lawyer, and expect the government to bail me out?

I don’t think so.

I have no choice. I have to deal with this myself. For better or worse, I need to take matters into my own hands and take full responsibility for my own healing, my own rehabilitation.

If the experts have something to contribute to the process, then great.

But I’m not holding my breath.

Now, back to my daily self-assessment… Today I’m doing pretty well… details to come…

What is it about Thanksgiving?

Thanksgiving (the US version) is right around the corner, and with it comes two anniversaries of different head injuries I sustained. At least, two that I can remember;)

The first of the two happened back in 1996 or so, when I was headed out to visit family several states away. I had gotten off to a late start, and I was driving on the day before Thanksgiving, which was a very poor choice (… and in itself could be seen as a sign of impaired cognitive ability 😉 ) Anyway, I was in the fast lane on a multi-lane freeway, and traffic was stop-and-go. The fast lane was the most erratic of all four lanes, as a lot of really impatient people (myself included) were weaving in and out, trying to get past one another, so they could just get down the road.

I was getting really tweaked by all the stop-and-go, but I steeled my nerves and hung in there. I was driving a fairly new rental car, and I was comfortable. I adjusted the radio and focused my attention on just getting down the road, keeping an eye out for what was going on around me. The fast lane started to pick up speed — to about 40-45 mph, which wasn’t mach speed, but was a lot faster than we’d been driving.

Suddenly, I sensed something was wrong. The distance between my car and the car ahead of me was quickly closing. I didn’t see any brake lights… I couldn’t see anything other than the rear end of the car in front of me quickly approaching. In a split second, I flashed on the ABS (anti-lock braking system) logo I’d seen on the hubcaps of the rental as I was getting in, and I hit the brakes quickly.

Not quickly enough, though. As though in a dream, I saw the gap between my car and the one in front of me disappear, and my front bumper bounced off the rear bumper of the car in front of me. Still no brake lights of the car in front of me. I breathed a sigh of relief, as it didn’t look like there was any damage. I could see the back of the car in front — I’d bounced back about a foot — and I hadn’t heard any breaking glass or crunching steel or fiberglass.

Then came the rear-end collision. SLAM! Behind me, another car and smashed into me with much more force than I’d hit the car in front of me. My car bumped forward, amid the sickening sound of a splintering impact. I held very still, listening for anything else, bracing for another possible impact. None came. Everything went eerily silent.

I was dazed for a minute… frozen in place… I saw the person in the car in front of me jump out of their car, walk to the back, see if there was any damage, and then drive away quickly. I didn’t have time to get their license plate, and I didn’t have time to talk to them. They were just out of the car — around to the back — and then they hopped back in their vehicle, pulled out of the line of cars that had all run into each other — and took off.

At my side window, I heard someone tapping. It was the person who’d hit me from behind. They were checking to see if I was okay, and I nodded that I was. I got out of the car and walked around to the back, and I found lots of pieces of their front grille lying on the road between their front bumper and my back bumper. My own car seemed to be unscathed. There was no sign of any impact at all — just some smears of paint from the car behind me.

The sight of the car that rear-ended me was pretty unnerving, though. The grille was smashed and lying on the ground, and the front hood was buckled and splintered and smashed. The headlights were — from what I could tell — stilli intact, but the front was otherwise creamed. I wasn’t sure if it was driveable, but that was not the thought that stuck most in my mind.

I traded insurance and car rental info with the person who’d hit me — they were driving a rental, too — and after a few minutes of each of us checking that the other was okay, I drove on, while they stayed. I’m not sure if they were waiting for a tow, or if their car was driveable. I remember very little from the rest of the trip — just that when I got to my relatives’ place, I got on the phone with the rental agency and told them what had happened.

They told me to fill out the form in the rental agreement and report any damage. So, I read through the form — which made no sense to me at all. No matter how often I re-read it, I couldn’t make head or tail of the words. They all jumbled together, and I couldn’t understand them at all. I looked over the car — from top to bottom, I thought — looking for any signs of damage. I could see nothing other than some cosmetic issues — little smears of paint and a little scratch, but nothing else.

I finally just signed my name and checked the “no damage” box and put it aside to mail when I got home.

And I had Thanksgiving with my family, which was a blur. It often is, so it’s hard for me to tell if I had some immediate after-effects of the accident.

I did notice after-effects later on, though. Like the fact that I’d missed finding the absent reflector on the back left side of the car. It may have popped out on impact, but I hadn’t noticed it was even missing, until it was time to go back home.

Also, when I got back to work, I found myself having increased difficulty following what was said to me, keeping my tasks straight, navigating the political landscape of my administrative job… things really fell apart for me at work, after the accident. I was clumsy and hurt myself by bumping into things. I was disorganized. I was irritable. I couldn’t articulate the way I’d once been able to. And within a few months, I had left that job — hopelessly lost — and started on a new career that involved computers, not office politics.

Ultimately, it was a good move, and it vastly improved my life. I hated that job by the time I left it. But I would have liked to have made the move to a different job out of pro-active choice, rather than re-active avoidance of problems I didn’t realize I was having.

Thinking back now, I can see how the first months of my new job were pretty slow going and very painstaking in many ways, probably because of that accident. I couldn’t follow instructions very well, I had trouble understanding what people were saying to me, and the one saving grace was that I was new, so people could blame it on me being green and a newcomer to a company that by its own admission is a bit of a confusing maze for the newly initiated.

I do believe that working with computers and being basically sequestered in my cubicle to sort things out, did help me recover. I was all alone, and I was quite happy that way.

So, that’s my first Thanksgiving TBI anniversary story.

The first of two that changed my life.

I’m listening… but I didn’t hear you…

Here’s a common problem I’ve got – and yes, it’s a problem, not an “issue” or a “challenge”.

I’ll be doing something, like writing a blog post or reading something, and someone will ask or say something to me that I’m supposed to respond to.

I’ll say “Yes,” or “Okay,” or something else that indicates that I’ve heard and understood, but I’ll realize a split-second later that I have no clue what they just said to me. And I don’t have the faintest idea what I’ve just agreed to.

This is a problem. It happens all the time when I’m asked to do a chore, take out the trash, feed the pets, or carry something to another part of the house. I will respond as though I heard and understood and agreed and will do this thing. But I won’t have a clue what just happened.

And then I get in trouble, because either:

  • I’ll ask a few minutes later what I was supposed to be doing, which makes it look like I wasn’t paying proper attention to the person talking to me, or
  • I’ll forget what I was supposed to be doing, and it won’t get done, which gets me in hot water

If I can explain to the person talking to me that I’m having trouble processing what they’re saying to me, then that can help. But I don’t always have the time to do that. And sometimes by the time I figure out that I’m lost, I’m in hot water.

I spend a lot of time being in hot water. Especially at home.

At work, this happens periodically, but I can usually cover it up, because I understand my job so well that I can usually figure out ahead of time what I’m supposed to be doing, and then I’ll do it on my own time. Or I can “push back” on the people who are all over me to do something, saying that I need to do it properly, and quit pressuring me, already.

From what I’ve observed, this is what happens when I “lag” with my processing

  1. Someone says something to me
  2. I sorta kinda register that someone is talking to me
  3. After a few seconds, my brain kicks in and starts paying attention
  4. I realize that I’m not paying close enough attention, and I start really tuning in
  5. I realize that the person who is talking to me has said a bunch of things that didn’t register, so I start “rewinding” what just happened to see what I missed
  6. I get a lot of visuals about what I’m being told — different pictures flash through my head, some of them fit what I’m being told, others don’t fit at all — and I try to figure out the context of what’s being said to me… this all happens in split seconds, and it’s usually accompanied by a fair amount of anxiety, because I’ve gotten in so much trouble for getting things turned around, ever since I was a little kid, and I don’t want to get in trouble again!
  7. While I’m rewinding and replaying what happened before, this person is still talking to me, telling me more things I should be paying attention to, but my attention is divided between present and past
  8. Best case scenario: the directive is short and simple and familiar to me… Worst case scenario: what I’m being told is something new to me that I’m not following very well, I don’t have a context for it, and I’m getting all turned around
  9. If I’m lucky, the person talking to me finishes up and believes I understand what’s expected of me. If I’m not at all lucky, I am completely turned around and need to ask for help understanding, I don’t say things the right way, and the person talking to me gets really pissed off at me… starts to yell at me for not paying attention, and tells me I’m pathetic or an idiot or something like that

It’s not that I wasn’t listening. I just didn’t hear them.

Between the ringing in my ears and the many, many ways my senses are working overtime… and the way my brain is working overtime trying to make sense of it all, it takes me a little while to switch gears and get a clue that someone is trying to communicate with me. It’s not that i don’t want to listen — it just takes me a little longer to do it.

I wish the communication process were simpler with me. I think I may start asking people close to me to give me a heads-up that they’re going to say something to me… like I’ve done with deaf folks I’ve known, who have wanted me to stomp my feet on the floor or do something else to let them know that I’m about to engage with them.

Well, there are lots of areas for improvement, and I’m figuring out more every day. It’s a process, really. Something that just develops over time. And if I just don’t give up and keep going and keep trying and keep working at it, someway, somehow, I do manage to get it all sorted.

I am listening… and eventually I will hear you.

I wish my therapist knew… I need more help than regular folks

First, let me say, I really like my therapist. They are insightful, patient, kind, and they  let me just say what I need to say, without getting alarmed.

But they don’t know about brain injury, and there are some things I wish they understood.

Like the fact that my brain doesn’t work like other people’s brains, and the assumptions they make about the source of my problems may not be accurate.

Specifically, I was talking last week about a relationship that’s very close to me, and they started talking about me being “codependent” with this person. Okay, first off, I’m brain-injured. That means I need to depend on others for things that regularly functioning people don’t have to. I do not necessarily have the capacity to be fully independent in all things. I’ve tried it in the past, and it didn’t work.  Even when I thought I was being independent, I was doing a piss-poor job of it.

Take, for example, the six months or so that I lived all alone, back in 1990. I’d broken up from a long-term relationship that wasn’t working, in February 1990, and then I got into another relationship with someone who was a pretty good caretaker, then got into drug and alcohol abuse, and I had to leave them, too. From about June until November, 1990 (when I met the person I’ve lived with pretty much ever since) I was on my own, taking care of myself and my apartment, going about my regular business. I was making art, drawing, sculpting, making pottery, writing, living my life… you name it. Things were pretty good, and I was doing a passable job of taking care of myself.

On the surface I was, anyway.

What most people couldn’t see, was that i wasn’t taking care of myself properly. I didn’t keep my place very neat, I didn’t eat right — I ate mostly rice and beans and steamed carrots and peas. I rarely ate a balanced meal. I didn’t go out much at all, but stayed inside and wrote and drew and listened to the radio. I had a very limited range of motion, and I wasn’t able to cultivate many friendships. I was employed for a while, then I had to leave my job and start temping because of physical issues that arose from me not taking care of myself. I was smoking a pack of cigarettes a day, and I was living in a constant fog and daze, unaware of what was going on around me, going through the motions without realizing that was what I was doing.

When I think back, I’m amazed I did as well as I did.

Then I met the person I’ve been with since then, and things started to turn around — here was someone that was able to interact with the rest of the world, whom I could “cue” off… I could follow their lead and watch what they did, and imitate their manners and get by. This person was so lively and social and so popular and in-demand with everyone them. They knew how to make people feel safe and valued and secure and happy… they were exactly the kind of person I wanted to be like. And when I followed their lead and behaved like they behaved, then I could experience life like they did, which was a much brighter and more vibrant way of living than my own. And I could buy myself time to figure out what was going on around me, by following their example and satisfying basic social requirements that others expected me to fulfill.

Writing this for others to read, it might sound like I’m just a shell of a person who just runs around and imitates others to get by. And in a way, it’s true. Left to my own devices, my range of motion in the world is so dramatically limited — I don’t feel comfortable out in public, because it’s so overwhelming for my senses. Given a choice between doing something productive and sitting motionless for hours, my brain will choose the latter. Given the choice between interacting with others and writing 100 pages of repetitive “insights” about an hour of my day, I’ll go with the writing. Given the choice (at the end of the day) between eating a full meal that takes an hour to prepare, and snacking on crackers and goat cheese, I’ll choose the snack.

It’s not that I don’t value myself. It’s not that I’m sucked into a relationship that’s compromised by codependence. It’s that I’m in a relationship that makes room for my dependence.

Calling me “codependent” makes me feel deficient. It makes me feel ashamed. I need more help than other people to do the kinds of things most people just take for granted. Given the choice between the normal thing that takes a lot of effort for me, and the irregular thing that my brain can handle without undue stress and strain, I’ll opt for the latter — and I’ll never realize there is anything wrong with it. That doesn’t make me bad, it doesn’t make me flawed. It doesn’t make me a basket case. It means I’m dealing with the limitations of a brain injury — a hidden disability that others have no idea is there, and they have no idea about the extent to which it affects me. Even I don’t fully realize it, most of the time. And people who jump to conclusions about me being psychologically compromised because of behavior that is brain-injury related really need to study up on anosognosia, before they start judging me and my life choices.

I’m realizing more and more each day, that I’m having a lot of trouble with the terminology that’s being used with me by my therapist — codependent… denial… shame… trauma… It feels to me like things that go hand-in-hand with brain injuries, are being interpreted as psychological/emotional issues…. and they get interpreted as things that I can change at will. As things that a little self-awareness and psychotherapy will solve. My question is, if an issue has neurological roots, how can a brain that’s been impacted be expected to fully grasp and deal with what’s going on with it?

It could be that I am never fully independent. I never have been, as much as I’ve wanted to be, and I may never turn out that way. But I don’t see why I need to be judged for it, or urged to be something I’m really not.

TBI Benefit #27 – An increased refund from the IRS

I got a surprising letter today – actually it came yesterday, but I was napping and resting most of the day, so someone in my household brought the mail in, opened it up, and left it for me on the kitchen counter. Lo and behold, the refund I’d calculated for my 2007 taxes (I filed for an extension and did an estimate, which was conservative — I took all the deductions I could legally take, according to TurboTax, and along the way, when I found some other deductions I was pretty sure I could take, but wasn’t 100% certain, I just didn’t include them. Now the IRS is telling me that they owe me a bigger refund — probably by a couple hundred dollars, since I don’t have my tax returns in front of me.

You don’t hear that every day!

My strategy of claiming less deductions than I suspected I was owed paid off… for now. I actually found some other earnings that I’d completely missed when I filed my estimated taxes, so my refund may actually be lower, but the habit of being more conservative and less hasty worked out for me. Playing it safe, with the understanding that I could be completely wrong in my math, soothes me and gives me something to fall back on. In any case, my thinking about things tends to get fuzzy and I tend to lose my train of thought, so I don’t dwell too intensely on tax anxiety.

I guess my attitude towards taxes is very different from most folks’ — I believe in paying them and paying my fair share. Yes, there are a lot of places my tax monies go that I don’t agree with, but all in all, the tax burden here is far less than in many European countries, PLUS I get a whole lot more freedom here, than anywhere else, so I figure it all evens out. I pay my way. TBI or no, I pay my way.

I like my roads paved and plowed. I like having elected officials. I like the fact that children of poor people have access to milk and cheese and other WIC resources. I’m not one to judge others for “gaming the system” — too many people do it in too many ways for me to get started on that, and it just confuses me. Our governmental system, say what you will, makes it possible for us to live in an amazing country that people are literally dying to get into.

Yes, I pay my taxes.

Paying taxes for me, is actually an important symbolic thing. Sure, I slip up sometimes and have to file for extensions. And sometimes I’ve messed up and even missed the extension deadline. But I do pay up, because being able to participate and contribute to this country is not something I take for granted. I’m a very different person from most folks, and my abilities are varied and my disabilities are often hidden, so the times when I can participate as a “normal” person… pitch in and help out… do my fair share… help make a difference, in however small a way… well, I take that opportunity.

I think a lot of “neurotypical” people take things for granted that mean so much to so many of us who are on the margins — by chance, trick of fate, or horrible accident. I think people tend to take for granted the ability to go out and get a job, the ability to participate in casual conversations, the ability to meet other people and be active in their communities. I think that a lot of regular people just assume that things are done a certain way — you get up in the morning, shower, dress, go off to work, put in your hours, then come home, pay some bills, watch some television, and go to bed… and do it all again, the next day. On the weekends, there are sports games and activities… movies and get-togethers… travel and leisure pastimes that many, many other people are doing… take the boat out on the lake… go skiing or surfing or skateboarding or sailing or hiking or play a ballgame of some kind.

But for someone like me with a history of tbi’s, none of those things are foregone conclusions, and they rarely go as smoothly as regular think they do (or should).

Getting up in the morning can be a challenge, as I’m rarely fully rested, and I tend to wake up either too early (most of the time), or too late. Showering can be a complicated thing, as I often can’t keep track if I’ve soaped up and rinsed off, shampooed my hair, or how long I’ve been under the water. And my lightheadedness and vertigo can make just standing in the shower a really nerve-wracking exercise.

Dressing for work can set me off, because I tend to forget what I’ve worn earlier in the week, and unless I have my clothing all lined up in chronological order, I can easily end up wearing the same thing twice in two days. Plus, if I’m really out of it, with vertigo or sensory issues, I can walk around for most of the morning with my shirt buttoned all wrong or my fly open. (I once went through a whole animated job interview, standing at a whiteboard, sketching out possible solutions to problems posed to me… with my fly open… which is NOT the kind of impression I wanted to make! I still got the job, but jeez, how embarrassing!)

Going to work has its own share of hazards, as bright sunlight is hard for me to handle, and even with sunglasses on, the shifting contrasts of light and shadows play tricks on my eyes. And when I’m tired, there’s always the hazard of road rage… or misjudging a situation. One morning, not long ago, when I was tired and angry while driving to work, I almost ran in to someone who wasn’t obeying the right-of-way rules — just because I refused (on principle) to budge. They were driving right into my path, but I had the right of way, so I motored on like a bull-headed idiot, and I almost got hit — just because “I was in the right” and they weren’t following the rules. On principle, I was correct and I had every right to drive through. But principle won’t pay for car repairs, and I only have one car I can reliably drive to work, so “standing my ground” was a really dumb thing to do. Plus, thinking back, if they had hit me, considering the place that I was in, that morning, I probably would have gotten in a fist fight with them, and I might very well have been arrested.  I was in a really bad place, and I consider myself (and the other person) to have been literally spared by divine grace. If it were up to me, I would have landed in really hot water!

At work, depending on my state of mind and body, I can either have good days or bad days. But it often takes a lot of effort for me to function at a “normal” level. Nobody I work with knows I’ve had TBI’s, and I’m not about to tell them. I hold my own and I do my piece, but it’s a real chore sometimes, just to get going. I have massive issues with initiating, with concentrating, with following through. I have huge interpersonal issues that I do a pretty good job of keeping quiet about — things like rage and hostility and anger and mood swings. On the surface, I try to stay impassive, but under the surface, it’s often a seething swirl of confusion and mixed emotions that are as high as they are varied.

Heading home in the evening, after a long day, I just try to listen to the radio and keep chilled out. I have to work harder at paying attention to traffic when I’m headed home, so that keeps my mind off interpersonal aggressions and whatnot.

At home in the evenings, I’m just so wiped out, so often, I can’t even look at anything that needs to be handled. I’m so exhausted… it’s all I can do, to eat supper and flop down in front of a movie. Now and then, I’ll manage to do things I’m supposed to do, but they often get pushed off till the weekends.

I have to say, in th past, I tended to just push through and not give myself a break and just ignore the fact that I was exhausted all the time. I didn’t pay any attention to myself, and I didn’t take care of myself. I didn’t like the fact that I was tired all the time, so I refused to admit it, and I just pushed through with doing whatever I felt needed to be done.

That was fine for my productivity, but the net result was that I was an impossible person to live with. I was unresponsive, most of the time, moody and volatile to the people closest to me, non-communicative and prone to temper outbursts and meltdowns, and the kind of person whose intense volatility made everyone around me walk on eggshells all day. Yes, I appeared to be productive. Yes, I was getting things done. But I was just a machine — a shell of a person whose only solace was that I was making good money and keeping up appearances. Inside, though, I was wracked with pain and sorrow and exhaustion and hurt and anger and rage and confusion.

Now, I think know I’m much better off. I’m less “productive,” and it takes me forever to get things done or process ideas and conversation, but I’m now communicating with the people who live with me far more than I did in decades… I’m now sleeping more and taking care of myself better than I ever did… and I’m actually aware of what’s going on around me, which is more than I can say for the person I was, just three years ago.

Weekends… well, I won’t even go into them. Mine are very low-key, for the most part, and I do so poorly with crowds and frenetic activity, most popular activities (like the ones I mentioned above) do NOT appeal to me. I spend most of my time gearing up to do basic things – like take the trash to the dump or go food shopping or go to the library or clean something. I spend a lot of time spacing out and not doing much of anything. And by the time Sunday night comes around, I often feel pretty deficient about not having gotten much done.

Daily life for someone with a TBI is often far from simple, and it’s often anything but straightforward. Sometimes it takes a monumental effort, to just approximate “normal.” I accept that as part of my life… just something I need to deal with… and I try not to dwell on it too much, lest it demoralize me and hold me back.

Given all the “normal” things that tend to be so complicated and difficult for me, if there’s something relatively simple and straightforward I can do to participate and contribute to the common good — like pay taxes — I’ll gladly do it.

It’s a small price to pay to be part of something as amazing as the United States of America.