Saturday chores – a-la tbi

I was feeling so great yesterday… by the end of the day, that is. I got up around 7:30 and got to puttering and blogging… writing and thinking and doing some extra needed maintenance on the blog. My upstairs study has devolved into a general holding tank for all kinds of crap I can’t figure out what to do with, so I steered clear of it and used the computer downstairs to do my blogging.

I needed to run some errands in the a.m. — pick up a package and mail out important things at the post office, buy a leaf blower, deposit a check at the bank, pick up milk at the store, and then come home to take trash to the dump and get some other chores done around the house.

I really needed to leave the house by 10:30 in order to get everything done on time. But the time got away from me, and at 11:04, I found myself pulling the car out of the garage, wondering how the heck I was going to get into town in less than an hour — the post office — the main place I needed to get to — closed at noon, and traffic was bound to be really slow, due to everyone milling around, trying to line up their lives before the Thanksgiving holiday.

I decided to take the freeway, instead of secondary roads, to get into town, and I was able to reach my destination with 9 minutes to spare. That was all I needed — and thank heavens for the upcoming holiday, as a lot of the college students who usually leave their errands till the last minute on Saturday and hold up the lines at the post office, were probably either headed home for Thanksgiving or off doing something else.

So, I did everything I thought I was supposed to do, I got myself something to eat, and then I hopped in the car and headed home. Again, I was late — the dump closed at 3:00, and I had all of an hour and a half to get to the bank, stop off at the store to buy milk, and head home to take out the trash.

I hauled ass back down the road, a little spacey and out of it — I was feeling foggy and not entirely with it — and I was losing track of what I was supposed to be doing. I managed to deposit the check in the bank and pick up milk and look at a leaf blower at the hardware store… and I was on track to make it home in time to bag up trash and haul it to the dump. But then I realized that I’d forgotten to mail out the stuff that was time-sensitive — part of the reason I’d gone into town, in the first place was to get the stuff mailed out that day!!! And now all the local post offices were closed for the weekend. Ack!!! Well, I couldn’t worry about it. I dropped the stuff in a box at a nearby post office, noting that it would all go out at 6 a.m. on Monday, so that was almost good enough. And I made a note to make notes to myself and follow them, when something was important.

I did manage to get back to the house in time to take the trash to the dump. But then I realized that I had really needed to purchase a leaf blower, not just look at it. I guess I had used my time okay earlier, because I had at least found where the leaf blowers were in the hardware store, which is sometimes half the battle, and I’d managed to price them and found them cheaper than I’d expected.

So, after I got the trash to the dump, I drove back to the hardware store, pulled the leaf blower off the shelf, and went looking for an extension cord. The associate who helped me pick out the right extension cord was helpful, but I didn’t understand everything they were saying to me… I sort of went by their tone and nodded and smiled and repeated what they said to me, to make it sound like I was following… then I hauled it all to checkout, credit card and rewards card in hand. When the clerk input the amounts, I realized that the extension cord was almost as expensive as the leaf blower — it was an 80-foot heavy duty cord that I’m sure will be fine… as long as it doesn’t blow the fuses in my house. I had tried to see how much it was, but I got confused and thought it was $19.95 — it was almost $40. Holy smokes! I guess I’d better take good care of it… I didn’t have time for the price change to register — if I’d had time and I’d considered that I needed to really watch my spending, I might have told the clerk to take the extension cord off, but I ended up just going with it anyway. I’ll probably get plenty of use out of it, and I need a good heavy-duty cord, anyway, so I can’t worry about it.

The hardest part of the visit to the store was dealing with the credit card payment. It should be easy, right? But there were lines all over the screen, and I had a dickens of a time figuring out where to sign my name, and then were to tap on the screen, after I was done signing my name. It took me a couple of tries, and the clerk had to tell me how to do it. But at least I used the stylus instead of the pen I had in my hand. And when all was said and done, I had a leaf blower and new 80-foot extension cord in the back of my car.

When I got home, I was so tapped, I just took a shower and fell into bed. I hate being so easily fatigued, and I wanted to spend some time in the afternoon using my new leaf blower, but it was not to be. Plus, the wind was up, and there were so many friggin’ leaves, it tired me out just looking at them. I didn’t want to push it. I’ve been feeling like I’m coming down with a cold, and I didn’t want to stress myself any more.

I wasn’t able to sleep the whole two hours I was intending to. About an hour into my nap, I woke up suddenly and started to cry. I hate when that happens. And it’s been happening a lot, lately. It often happens when I’m either freshly rested or I’m over-tired. Fortunately, I’m usually alone when it comes over me — first thing in the a.m. while I’m getting ready for work, when I wake up from a nap, or before I fall asleep at night. I can’t stand crying with other people around me. I feel weak and pitiful and self-conscious. But when I woke up yesterday, I was all alone, except for one of my cats, so I had a little cry and released some of the pressure of this time.

Thanksgiving is the anniversary of two of my past tbi’s (1995 and 2004), and I experience a deep sense of loss that I can’t always put my finger on, around this time. It’s also the time of year when I started to really realize and come to terms with the various losses I’ve sustained — the jobs, the relationships, the financial security — and it’s when I was first able to really look at the impact that tbi has had in my life, ever since I was young. It’s a time when I face all the more closely the loss of my dreams, the loss of many of my fondly held assumptions about what I am capable of doing and what I can safely attempt, the loss of the person I once was… not to mention the person I mistakenly thought I had been (but never truly was). Thanksgiving can be a very hard time for me, so I have to cut myself a break and just let myself cry when I need to cry.

Last night was a little difficult — lots of agitation coming up, lots of resentment and stress and breakdowns in communication and bad timing. But by the end of the evening, I had regained my footing and relaxed into a children’s movie that — while a little simplistic and not quite believable in places — still didn’t have the rough language, sex and violence that tends to upset me.

All in all, forgetfulness and backtracking and confusion notwithstanding, I did manage to get many of my chores done. And today is shaping up to be a nice day, so I can continue with the theme and hopefully fire up that leaf blower.

Note to self: Read the manual and double-check everything, so you don’t blow the motor or screw up the apparatus before you get started. I don’t want to wreck my latest power tool, like I did my chainsaw – which I totally hosed because I used it a bunch of times without ever oiling the chain. (In case you’re wondering, that’s a bad thing and leads to malfunction — never a good thing with chainsaws!)


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Discretion is the better part of valour

(British & Australian, literary, American & Australian, literary)… means that it is better to be careful and think before you act than it is to be brave and take risks.

I have to re-learn this periodically… sometimes the hard way, by screwing up and remembering that sometimes inhibitions are good!

it’s particularly important for TBI survivors (or anyone dealing with a stigmatized, misunderstood, chronic condition).

As much as we may want to reach out and help others, when it comes to revealing details about ourselves and our lives, tbi survivors need to be especially careful. The rest of the world doesn’t necessarily understand what it’s like to be head-injured and still be functional. There’s a lot of prejudice out there. And if people have information about you having had a tbi, it can work against you.

I recently heard a story about a tbi survivor who posted a comment online identifying themself with first and last name. Unfortunately, they were job-hunting at the time that they posted about having had a tbi, and people they were interviewing with Googled them and found out about them… and their job search got that much harder.

That’s truly unfortunate. I’m sure it happens all too frequently. I know someone whose successful father went through his entire adult life needing to hide his epilepsy because of all the stigma and the negative effect it would have had on his ability to provide for his family.

Sadly, this is still the case with so many conditions. The ADA is supposed to protect people like us from discrimination, but there are so many ways for employers and lenders and other folks in power to get around the laws, that even if we are discriminated against, the burden is on us to prove it. And if you’ve got a cognitive deficit and you can’t afford a decent lawyer, well, then you can be pretty much out of luck.

Some Poor Person’s Strategies for Preserving Autonomy and Human Dignity are…

  • Silence. Period.
  • Strictly closed lips about your condition unless you’re in the company of close confidantes who can be trusted.
  • Obsessively guarded health information that is Never Ever shared with others who may use that information against you. That includes co-workers or colleagues who may be competing with you professionally, at some point on down the line.
  • Making sure you surround yourself with family and loved ones and friends and supporters who can defend you, no matter what.

It’s unfortunate that we live in a world where something as random as a head injury can have such a dramatic impact on your life and livelihood, but it happens. All the time.

With this in mind, I’ve disabled the setting on this blog that requires a name and email address for each comment. I hope this may help others like me avoid the situation that hapless job-hunter had to deal with.


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This just in — video by and about mild tbi

John is  mild TBI survivor since Sept 2005 and he’s sharing this with us here. His son Chris (21) filmed this talk he’s given to a bunch of people — medical professionals, case managers, and grad students in training for Speech-Language Pathology — called “You Look Great!” — Inside a TBI. It’s more or less the starting point for the book he’s writing of the same title.

He has posted the 1st 5 parts on YouTube. Part 6, the finale, should go up shortly. They’ve received wonderful and encouraging feedback from survivors and their spouses and caregivers about how the video helps them describe what they’re going through too.

Part 1:
http://www.youtube.com/watch?v=x9Xso4qGdlI

Part 2:
http://www.youtube.com/watch?v=qPNd_oXx4Ec

Part 3:
http://www.youtube.com/watch?v=I-1q1bfeH20

Part 4:
http://www.youtube.com/watch?v=hvLYuz8i9Kk

Part 5:
http://www.youtube.com/watch?v=JpFJMgyWRvM

Part 6:
http://www.youtube.com/watch?v=6ZMkKKCNEy8
Thanks John!

This is totally awesome — we need all the info we can get!

Thanksgiving anniversary #2 — 2004

I’ve been thinking a lot about the Thanksgiving holiday, lately. It stands to reason, since I really got in touch with the impact that my TBIs have had on me, last year around this time. You wouldn’t think that a history of at least six head traumas (most of which knocked me silly and one of which knocked me out), and a lifetime of cognitive-behavioral issues, a spotty employment history, and a see-saw of a personal financial history would escape detection, but I never put it all together and realized that my car accidents, concussions, falls, and blows to my head could have had a cumulative effect, till last year, this time.

But if you consider that head injury has a way of disguising itself (like alcoholism is a disease that tells you there’s nothing wrong), it’s not entirely unlikely. My cluelessness can be explained.

It wasn’t until I saw the long laundry list of tbi-related cognitive/behavioral/physical issues in one place, and made a realistic and honest assessment of my life history, that I realized there was something really, really wrong. I’ve never received medical treatment for my issues. I never had them even identified — till this past year — as something other than “sinfulness” or “character defects”. It never occurred to me that they might be physiological/neurological in nature. It never occurred to me that I might not be BAD… I have just been INJURED.

Anyway, I’m going to quit feeling like a complete and total idiot, and get on with talking about my fall down the stairs in 2004… the most recent time my life was changed by a head injury…

A day (or 2) after Thanksgiving, 2004, I was getting ready to leave my parents’ house after the holiday. I was standing at the top of the stairs at my parents’ house (very steep staircase, about 20 stairs or so), packing bags and carrying them to the car to head home

I was going to walk down the stairs, when someone called to me from the bedroom. I was standing at the top of the stairs, no bags in hand, my head all over the place with thinking about making the trip back.

I turned to listen to what they were saying and see what they wanted me to do, and my feet just went out from under me. I was in stocking feet, which wasn’t the smartest thing, since the carpeted stairs have always been slippery, and the 20 stairs or so are very steep.

It was so surreal… My feet just went out from under me, and I landed on my back and I felt the back of my head hit hard on the top 3-4 stairs, as I went down. My head just bounced off the top stairs, and it took a few impacts before I realized I was even down, and that I was headed for the ground floor. It all happened so quickly — a split second, it seemed like. I’ve always had fast reflexes, so I had the presence of mind to lift my head up as I tried to stop myself by putting my hands and feet along the walls. But I was moving too fast, and I couldnt’ get a grip. I couldn’t stop my fall, and I ended up sliding down the whole flight.

When I got to the bottom, I was dazed and drew a blank. What had just happened to me? Why was I at the bottom of the stairs? I may have actually been “out” briefly — maybe a few seconds. I don’t recall exactly. I do recall there being a bit of a gap in my thinking at that time — things may not have gone completely black, but they did get very faint and dim. I didn’t immediately know where I was or what had happened to me. I remembered going down… falling… sliding… but I still didn’t know why I was at the bottom of the stairs.

I wasn’t sure if I could move, and someone called to me, as though from a distance. They sounded worried… harried… concerned…

I answered faintly, then I got up and went into the dining room before anyone could come to check on me — I just didn’t want to worry anyone. I also didn’t want anyone pulling on me, while I was trying to get my head together. This has always been my way — to shake off others around me, while I collected myself. To refuse assistance, while I got on my feet. Some people have called it “pride”, but I literally cannot think when someone is all over me, talking to me, interacting with me… and I need to keep my head clear, if I’m going to ensure I’m okay.

I got up and went into the dining room to check myself out. I just sat, dazed, at the dining room table, for a few minutes, catching my breath and trying to get my head clear. Gradually, I realized that my back was hurt. I didn’t really think anything of hitting my head.

Someone came downstairs to check me out, and asked if I’d hit my head. For some reason, I said “No” – I’m not sure if I even realized it at that time, I was really dazed — but I do remember that I didn’t want to worry them, and I didn’t want to have to concern myself with that, because I didn’t trust the nearby hospitals. I was also concerned that the hospital would take actions that I couldn’t defend myself against, because I couldn’t communicate effectively. The last thing I wanted, was to be checked into a hospital I didn’t trust, in an area where I was uncomfortable… and miss work. I just couldn’t take a chance on bad healthcare.

I remember that I was more worried about my back being torn up – it really hurt. It had a big brush burn on it, and I focused on getting that taken care of. I had someone put some cream on it and cover the really raw parts with a bandage.

I recall being somewhat out of it, for the trip home, but I made it back okay. I don’t remember much from the days following, as that was a very busy time of year at work, and there was a lot going on. We were at year-end, and a mammoth project I was working on for the last year, was being launched. Tensions were high, and we all had to be 100% “on” — the last thing I could accommodate at that point, was a head injury. Or any kind of injury at all.

I think that urgency, that determination to not be “substandard” may have driven me in ways that kept me from healing. I didn’t get the kind of rest I needed. I didn’t take care of myself. I ate the wrong foods. I really pushed myself and took on too much. I think this is what happens with head injuries — at the time when we need more help and rest and care than usual, our injured heads tell us the exact opposite: that we don’t need as much rest, that we’re fine, just fine, and that we can do more than we realistically can. And because our injury is hidden, and others tend to hate to think we might be cognitively impaired, our drive is not only accepted, but sometimes rewarded by the very people who are also harmed by our injuries.

After that accident, I started having more trouble at work, relationships fraying and straining, not being able to keep up with my work, constantly feeling like I was falling behind, saying inappropriate (and insubordinate) things  in meetings, and becoming openly hostile and verbally aggressive towards others I worked with.  I just was not myself… people became afraid of me and started avoiding me and started pushing me away, marginalizing (or just outright ignoring me) in meetings and openly playing favorites towards others who were competing with me.

I went from being one of the top go-to people in my line of work, to persona non grata and being told I had to leave the group by July of 2005 (8 months after the fall). I’m surprised I lasted that long, but I think my past “stores” of goodwill that I’d built up over nearly 9 years of dedicated, quality service, spared me immediate repercussions.

When I was told I had to leave the group, highly-placed vice presidents offered to help me find a better position. There were people in positions of power who offered to help me, but my thinking was so fuzzy and my behavior was so erratic, that I couldn’t accept their help. I couldn’t understand the consequences of my problematic actions and behavior, and I decided to just take matters into my own hands — another bad idea, compliments of my head injury. I converted from a full-time employee to a contract technical writer at about 60% of my former pay. And four months later, I left the company permanently.

Thinking back, I can’t say that I miss the high pressure and stress, but if I’d had a clue about what was going on, and if I’d been able to manage myself and my situation better, I might not have had to part with hundreds of thousands of dollars in stock options and nearly a decade of quality recommendations and high-performance job history.

It ended on a very sour note… and it wasn’t until this past year that I realized — fully — that it wasn’t necessarily that “awful” company that was to blame for my crash-and-burn. It was my head injury.

So, this Thanksgiving is quite bittersweet for me — bitter because I now realize just how much I have lost over the course of my life, thanks to my injured brain and the ignorance of people around me and my inability to get the help I needed.

And it’s sweet, because I have a lot of love in my life, I have people around me who accept and support me and realize that I need help with my issues, not judgment for my shortcomings… I have my health, I have my sanity, I have access to a lot of quality information, and even though things are sort of dicey, right now, with my job and money, I have the determination and the stubbornness to hang in there till i figure it all out. I also have professionals who can point me in the right direction — whether in person or online — and even though I do have to overcome a lot of deficits just to function at a ‘normal’ level, I can still do a pretty good impression of a regular person… and buy myself time to figure things out for myself.

I never knew, until a year ago, just how much my head injuries had cost me over the course of more than 40 years. Now I know… now I have information… and I can now get help.

And so I shall.

I don’t give up. I just don’t. And for that persistent quality, that stubbornness, that inborn tenacity that refused to take “no” for an answer… that inner wanderer who wrestles with angels and refuses to let go until i am blessed… for all that, I give thanks.

A picture of what happens to me when I’m “not listening”

I call what happens to me “stovepiping”.
stove-pipe thinking

The blue lines represent my thinking process.

The pink lines represent the rest of the world.

The orange lines delineate what I call ‘the social layer’ of interaction — the place where people process information together.

This is not to say that I think the rest of the world is superficial or not as “deep” as me — it’s just an attempt to show how I tend to stray outside the social layer to think things through and process information, while the rest of the world goes on without me.

While people are talking and interacting, I can get overwhelmed, so I have to “step away” mentally and go off into my own space to make sense of what’s going on around me. I get very involved in a specific thing I’m thinking about… Sometimes it takes me a while to really get my head around what’s going on in the general vicinity, so I go into what I’m thinking about very deeply,

Meanwhile, the rest of the world around me moves on and (as far as i can tell) just disappears. They are interacting at a level that I find overwhelming and confusing — especially if I’m tired.

The more difficulties I’m having with parsing out all the stimuli around me, the deeper I go into the “stovepipe” of my subject, and the farther away from the rest of the world I get.

So, when someone tries to get my attention (from what seems like a very far distance), it can take a while for the communication to get to me. I’m going to draw a picture of the process, because it’s getting hard for me to put it into words, exactly.

I think a lot of us have this… tbi or not. The more involved we are in the things we’re thinking about and/or involved in, the more distant we can become towards the rest of the world. I think the difference between neurotypical folks and tbi or other “neurodiverse’ folks is one of degrees.

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.

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.