Website for Veterans with TBI/PTSD at Work

America’s Heroes at Work
Supporting the Employment Success of Returning – Service Members with TBI & PTSD

This website “a U.S. Department of Labor (DOL) project that focuses on the employment challenges of returning service members living with Traumatic Brain Injury (TBI) and/or Post-Traumatic Stress Disorder (PTSD).”

Bravo! Brava!

The site has good information that’s straightforward and to the point. I would like to see more detail, but I think they’re a fairly new site, and they’re still under construction.

If I ever am in need of support in telling my employer about my TBI(s) and/or coming up with solutions for dealing with my challenges, I’ll definitely point them to this website.

That’ll learn me… learning to back up my work

Normally, I’m very good about keeping track of where I put things that I cannot do without. Like my sunglasses (which protect my eyes from intense sunlight)… my wallet (which holds my connections to regular life)… my daily minder (which holds my clues about what’s supposed to happen next)… my laptop (which goes with me just about everywhere and has a specific place to rest, when I’m home)… and until Saturday, my USB memory stick, which contains a lot of information I’ve been collecting and working on over the past weeks.

On Saturday, I was getting read to go out and about, to run my bunch of errands, and I had my memory stick with me. I thought I might need it while I was out. But at the last minute — and this is the last thing I remember — I thought, no, i’d better leave it at home, and took it out of my pocket. After that, I remember nothing about my memory stick.

I’ve spent the last day looking for it, on and off. I know I was in the house when I took it out of my pocket. I know I was! And I think I was in the kitchen. But I may have been in the dining room. Or the living room. I may have put it down, or put it in a pocket… I cannot for the life of me remember where I put it!

This is distressing for me. I had a lot of good information on there. I can re-assemble it and replace most of it, but that takes time. Anyway, now I know I need to always have a backup — email the documents I find/write to myself, so they’re always on a server somewhere… copy them off the memory stick to my computer… print out copies of what I need… make sure to do something that makes sure I always have more than one copy in more than one place… and be present.

I can’t always remember everything… but I can make sure I have a safety net of sorts to cover my butt.

Dang! That USB drive has got to be around here somewhere!!!


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My memory seems to be slipping

I’m realizing, more and more, how many things I just plain forget. I was talking to someone yesterday who was angry over me being concerned about them getting words turned around and facts confused — they said that they have been doing much better with regard to that, and they don’t do it nearly as much now, as they used to.

I said I was just concerned, and they said I didn’t need to be, because they’ve been improving… but I wouldn’t know that, because there are lots of things I forget. They said I was in no position to comment, when I couldn’t remember the past well enough to compare it to the present.

I think my memory has been slipping… and in fact, it’s aways been a bit spotty. There are vast chunks of time in my childhood that I cannot recall. My parents have talked many, many times about people and events that I cannot for the life of me recall. In fact, when she starts telling me about people or places or things she thinks I should remember, my mother usually asks me straight off, if I recall such-and-such or so-and-so.

I often have to say “No, I don’t remember.”

Oh, well.

Does it dramatically impact my quality of life? I’m not sure. Certainly, when I forget where I put library books and I rack up fines, that doesn’t help. But my fines help support the library, in however small a way. When I misplace my USB memory stick that has important files on it — I literally lose my memory twice ;) — it’s not much fun. And when I forget to mail things that need to go out in the mail that day, it can cause problems. But none of these things are earth-shattering, and I can usually work around them.

And use tools. Like keeping a notebook with me to write things down that I need to do, in the order I need to do them. Like using my calendar at work and color-coding my activities, so I have a context and an understanding of what I’m supposed to do. Like asking for help when I need it, without feeling self-conscious and stupid. Like developing the habit of putting things back in the same place, every single time.

In a way, my habits and lists make me even more functional than some people I know, who just assume that their memories will work. I don’t lose my glasses or my gloves or my wallet or my car keys, because I’m so strict with myself about always (and I mean always) putting them in exactly the same place, every single time. I don’t deviate from certain aspects of my routines — like always hanging up my car keys in their allotted place, as soon as I enter the house, like always putting my gloves back in my coat pockets, like always checking for my wallet before I go anywhere, and always keeping my sunglasses in the car in their case in the glove compartment of my car.

People have called me a variety of names, because I’m so strict with myself: nazi, anal-retentive, rigid, inflexible, too-strict… you name it. But these people don’t realize that if I deviate just a tiny bit from my routine and my ways of doing things, I can really get lost. If things aren’t where I expect them to be, my brain forgets that they exist. And that’s about the last thing I need to happen with my keys, my wallet, my sunglasses, or my gloves.

I do what I have to. And I get by.


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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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A normal weekend, at last…

It’s Sunday, and I’m feeling better today, than I have in weeks, if not months. True, I am a bit tired, having stayed up past midnight, last night, and having not gotten a full 8 hours of sleep. And I have a busy day ahead of me, doing yard cleanup before the weather turns, this coming week. I had a kind of dicey day, yesterday, too, in some ways. But I’m still feeling better than I have in quite some time.

I think I turned a corner about a week ago. Sometimes, it takes me a while to figure out how I’m doing, so I didn’t realize just how big a corner I’d turned, until this weekend. I had been really down on myself for quite some time, feeling stupid and dense and out of it. I felt like everything I did was wrong, and I didn’t understand till after I’d messed up that I had done something wrong. I felt like I was chasing my life all the time, pushed and pulled by imaginary forces that were set on making my life difficult, and I felt like everything was out of control. Totally. I felt like I was screwing up my neuropsych evaluation, that I was giving wrong information, that I was being a bad partner, that I was being a bad employee, that I didn’t understand where my life was going — or why — and that I was too disorganized to be of much use to anyone… I felt like I was a total friggin’ loser who wasn’t good for much of anything.

I was having a really hard time, and I would show up at therapy all depressed-like. I was confused and feeling behind the 8-ball and grasping for some pity and empathy from my therapist, who was kind enough to indulge me a little, without validating my every whining complaint. I just wasn’t dealing well with much of anything, and I think it especially showed in therapy, for weeks and weeks, if not months.

Then, about a week ago, I sat down and did a thorough self-assessment over the course of a couple of days. I had my form with me, and periodically during each day (I think it was a Thursday and Friday), I really hammered away at my self-assessment, trying to sort out where I was and how I was doing and what was going on in my life as honestly and as unsparingly as humanly possible. I wrote down everything I could, in as much detail as humanly possible, and I really took a long, hard look at myself, trying to fill in as much detail as possible.

And it helped! I’m still trying to figure out why, but in any case, it helped tremendously. And when I went to therapy this past Tuesday, my energy was totally different, and my therapist commented that something had really shifted with me. They were pretty amazed. And when I think back, so am I.

When I look more closely at things, here’s why I think my self-assessment(s) helped me:

  1. I got outside my head and engaged with the world around me. When I did my self-assessment, I was forced to look at my relationship with the world — what I was experiencing, how it was affecting me in the world, what I was doing in response to it, and what was and was not helping. I stopped being trapped in my head, confused, frustrated, being pulled down-down-down into my problems.
  2. I managed to get “above” the problems I was having and be logical and objective about it. This helped me see my problems as separate from myself, not part of myself. And that is very, very important, in that I don’t have to carry around a lot of unfounded guilt about being deficient and inherently flawed.
  3. I was forced to come up with ideas about what I did/could do about my problems. Not only did this help me to think analytically about my problems (which uses a different part of my brain — a more logical part, not the subjective/emotional part which was really hurting and overloaded), but it also helped put me in the driver’s seat and showed me I had influence and control over my circumstances.
  4. I wasn’t allowed to wallow in my problems. My self-assessment(s) took place periodically over the course of a few days, in the midst of the everyday. I didn’t have a lot of time to sit around and moon over my issues… to feel sorry for myself… to feel badly about myself. I had to move — get on with it — make progress throughout the course of my day, even though I wanted to spend more time on my self-assessment. I had to think quick and think fast and be utterly honest. It jump-started in me in serious ways.
  5. I was in charge of coming up with solutions for my problems. I wasn’t allowed to blame everyone else for my troubles. And I wasn’t allowed to let myself off the hook and pretend that I was helpless and unable to deal. I had other self-assessment forms available that I could consult, so I could see what worked and what didn’t. Even if I was feeling the effects of events and injuries that were beyond my abilities, and even if I was feeling like I had been victimized by a condition that I don’t always have a lot of control over, I was able to take responsibility for creating solutions to my situation(s). And that made all the difference.
  6. It helped me see that even though I have really bad problems, at times, life goes on. Even when my fatigue is extreme, and I’m having a lot of pain and confusion and agitation, and my memory is slipping, I’m still able to have this amazing life that’s full of love and laughter and entertainment. I know that other tbi survivors may not be as lucky as I — many folks lose their sense of humor completely and they become very non-emotional and disconnected from life around them, which is a tremendous loss for anyone. I also am very much aware that a lifetime of dealing with tbi after-effects has taught me much that helps me get by, so I have my experience to thank for my resilience — which many others do not have… but they may be able to develop. I’ve been around long enough to know, even when things seem to be at their worst, tomorrow is always another day, and I always have another chance to make right the things I did wrong. Even if those things are hurts I caused others, or things I did to violate the law (like losing track of where I am and speeding… or missing a stop sign… or stealing, like I did when I was a little kid, but don’t do anymore), as long as I am willing to take responsibility for my actions and make restitution, I can do at least something to make right the things I’ve done wrong.

So, this weekend, as I go about my business, feeling freed and supported and… well, cleansed… as I forget to do things on my list, lose track of time, make poor decisions about what needs to be done in what order, and then spend my time back-tracking and making good on what I had intended to do, originally… as I race to catch up with my yard work, which I let go for too long… as I go through the motions of pacing myself enough to get a good nap in, and I try to catch up with friends I may be seeing over Thanksgiving — and the other holidays — I am intermittently self-assessing as I go… checking in to see if I’m angry/sad/anxious/impatient/in pain… etc. And I’m coming up with solutions as I go.

And the more I do, the better I feel, the better I live, the more of a believer in self-assessments for TBI survivors I become. Even though we’re “not supposed to” be able to tell what’s going on with us, and we’re “not supposed to” be able to recover our faculties entirely, I refuse to be kept from recovery and rehabilitation by “shoulds” that someone else came up with. Even if it is “experts” who are saying that we tbi survivors can’t possibly know our own minds, and we can’t possibly bounce back on our own, I say, No one has the right to limit me and my recovery. History is full of accounts of individuals who beat the odds, and why shouldn’t I be one of them? Grace is not reserved for the “deserving” alone — it wouldn’t be Grace, if it were.

And I reserve the right to self-assess and craft my own solutions to my own neurological problems in ways that are appropriate and helpful and healthy and make positive contributions to my life and the lives of those around me.

I will not — and cannot — be stopped.

I may have deficits. I may have limitations. But I have tools that can help me compensate, and I refuse to be prevented from living my life to the fullest by mild traumatic brain injuries!

I hope you’re having a great day, and that your Thanksgiving is wonderful. So long as we are breathing, we all have at least one thing to be thankful for.

I never want to forget that.


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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.

Of Curses and Candles

Checking my stats, I see that I’ve been getting a lot of traffic relating to “temper” — and I’ve been dealing with a lot of that, myself, over the past weeks. Doing this neuropsych evaluation has actually been more trying than I like to let on, and my reluctanced to admit that has not helped me. I feel like I’ve become more irritable, more short-tempered, more prone to blow things out of proportion, more likely to “go off” over little things, which is not good for the people who live and work with me.

I really need to do something about this.

And that something, I think, has to do with realizing that I’ve been having temper issues, and also being resolved to do something about it. I mean, it’s all very well and good, if I get in touch with my frustration over my neurological experiences, and I vent about the AMA, but whom does it really serve, aside from myself… and/or other people who agree with me and are really tweaked over the American medical establishment?

I’ve been really working at ideas about how to not only curse the darkness, but also light candles. There is so much darkness, and the way my brain works, I am always ready, willing and able to curse away. But what’s really needed, I think, is more candle-lighting — ways to address the deficits that not only I, but others, face in this struggle to maintain some semblance of normalcy.

After all, I’m human, and so are my doctors. And while they may not have to deal with sheared axons and frayed dendrites, they have their own sets of challenges they need to deal with. I figure, if you’re human, you probably have plenty on your plate, right about now. Life isn’t easy for any of us, if we’re living to the fullest… and doctors are some of the folks who do that the most… dealing with life and death and a lot of the harder aspects that regular people cannot. And so very many of them only get to see people when they are in really bad shape… it must seem, at times, like an endless line of decrepitude that is thankless and draining and all for naught, even as they patch people up and send them back out into the world.

Health care is certainly not an easy road to travel. And in all honesty, I have to tip my hat to anyone who is willing to genuinely devote their life to it.

That being said… and recognizing the limitations of the current health care system, as it relates to TBI survivors — certainly there must be a way for doctors — neurologists, general practitioners, neuropsychologists, psychiatrists, and all the other folks who deal with the human brain… I’m back to wondering, along with others, what the best course of action is to educate the professionals who deal with us.

I think, for starters, they need to not be afraid of us. As long as I can remember, people have been afraid of me, in part because my face doesn’t always show what’s going on with me, and I often look a lot angrier than I am… in part because I do have a quick temper, and I’m not afraid to say what’s on my mind (which is a problem, at times). My ways and words don’t always come across the right way, and I’m not always aware that they aren’t.

I also think they need to realize that I’ve got a raft of physical issues that are all bubbling under the surface — sensory issues that really mess with my sense of balance (literally and figuratively), fatigue issues that wear on me, and a serious lag-time in processing auditory input. I’m not being difficult on purpose. I’m not ignoring them on purpose. I’m working overtime, and I’m getting impatient with myself and frustrated and self-conscious, so that’s going to do a job on me, too, most likely.

It would be nice if my health care providers would not jump to conclusions about what’s going on in my heart and head, just because of what they see on my face. I may look angry, but I am probably scared to death at the moment, uncertain of myself, frustrated from long hours (or days or weeks or months or a lifetime) of screw-ups, confused by what they’re telling me, and feeling really rushed to get all the information out in the 50 minutes they’ve allotted to me.

I need folks to not treat me like a hostile party, just because I can’t figure out how to look friendly. And I need them to cut me a break, when I show up at their door, and give me the benefit of the doubt for a few minutes, before they jump to conclusions.

I can’t even begin to tell you how frustrating it is, when this fiery temper of mine connects with fear and flares out of control. It’s horrible to experience and when it just comes out of nowhere and I can’t stop it till it gets a foothold, it’s so demoralizing. I am always looking for ways to deal better with it and manage it better. And some of the techniques I’ve learned have been great. But when I’m anxious and fatigued and I feel like my future is on the line, and people aren’t understanding me, it’s really a problem.

And it worries me, because I’m going to be seeing another specialist in another couple of months (I made the appointment and it’s all lined up), and this time the condition I’m looking into is seriously freaking me out. Coming to terms with my TBI was one thing. It is what it is, and as long as I don’t have more injuries, I at least have something concrete to work with.

If I’m going to get the best help possible, if I’m going to function at a reasonably normal level, if I’m going to participate as a full-fledged member of society, I need some extra assistance and understanding from the folks who are tasked with helping me solve the mystery that is me. I need the people who are helping me to realize that I’m dealing with some hidden deficits that aren’t immediately apparent to them, and even if I do seem like I’m self-possessed, it could very well be a well-practiced front that I put forward. And it bears no relation to the reality of what’s going on inside me. And I’m not mad at them and feeling aggressive towards THEM, per se. I’m just coming from the same place that a frightened, hurt animal would come from — like a German Shepard with hip dysplacia snaps at someone who touches their sore hip by accident.

This is not an excuse, by any means… It’s a start of an explanation for where I am, and why I am the way I am… like so many other TBI survivors who have to deal with temper issues (and are apparently searching the web for info about this topic, and arriving here). It’s a rough stab at trying to figure out what’s what with me, and how I can really constructively address it.

I’m not perfect, by any stretch. I have a lot of flaws and shortcomings, and sometimes I don’t realize till too late that I’ve spoken out of turn or I’ve done something that deeply offends or hurts the feelings of another person. That includes doctors. And therapists. And neuropsychologists. That includes police and EMTs and librarians and toll booth attendants. It includes friends and family and significant others and co-workers and people on the street.

If you’re reading this and you HAVEN’T had a TBI, please keep in mind that with some of us, things are not as they seem, and we may be far less angry/aggressive/disagreeable than we seem to be at first blush.

If you’re reading this and you HAVE had a TBI, please know, you are not alone. Not by a long shot.