Quick – before the snow flies

I’ve had an increasingly pronounced sense of urgency about getting my affairs in order. Could be it’s the end-of-the-year rush, or maybe it’s this sense of immanent change, or perhaps it’s the realization that my life is changing — yet again — but this time it’s changing for the better, and I need to be more mindful of how I manage my resources and energy.

Since I began my neuropsych testing and evaluation, over a year ago, I’ve been acclimating myself to the idea that disaster is not necessarily a given in my life. I’ve realized that the head injuries I’ve experienced, the mild traumatic brain injuries I’ve incurred over the course of my life (beginning in early childhood), have played a direct role in the course of my life. I’ve also realized that with the knowledge of how my brain functions (or fails to function), I can devise strategies to offset the after-effects of MTBI, and plan alternative strategies. And with the proper amount of mindfulness, I can follow through with them in a certain what that can — and does — help me head problems off at the pass before they become the kinds of catastrophes I’ve coped with my entire life.

Yes, I now have tools to help me make my way in the world. And I need to get my act together, to match the level of my mindfulness-augmented competence.

So, I spent the weekend cleaning and moving. Saturday morning, I cleaned my study. Finally. It’s been on my to-do list for months, now. The last time I cleaned it, two years ago, the space felt truly amazing. I just loved being in my study (where before I had dreaded it). But it’s gone slowly downhill over the past few years, which I knew I needed to fix. So, I worked on that consciously on Saturday morning. And while I didn’t complete the task (which took over a week, last time I did it in in 2007), I did make a sizeable dent. And it’s a deeper sort of cleaning now, than I have ever performed in any of my study spaces.

I really focused on doing it mindfully — cleared out a whole bunch of old files, filled several grocery bags with paper to be recycled, dumped old damaged items that needed to be “liberated” a long time ago, and the proceeded to rearrange the contents of my closet. I still have a ways to go. I’m probably about 10% along the path. But the point is, I started it. (And I continued this morning, cleaning out one of my over-stuffed, disorganized filing cabinet drawers.)

Saturday afternoon, I moved leaves. Raked. Used the leaf blower/vac mulcher. Moved 7 large tarps’ worth of material off the front lawn. I may need to make another pass before the snow starts to fall, but if I don’t, at least I’ve made enough of a dent to protect the grass from the effects of acidic leaves over the winter months. I also moved summer items from outside to inside, and I also fixed the dryer duct, which had  become too clogged for the dryer to work properly.

I should have fixed the dryer duct years ago, but that was one of the things that fell off my plate, after I fell down the stairs 5 years ago. You wouldn’t think that hitting your head on a bunch of steps would completely derail your life, but after that fall, I stopped paying attention to the list of things that needed to be done. I’d had a list I was working with — we’d only been in the house two years, up to that point, and the series of things I was planning to do over the coming years was starting to become more manageable and less clogged. Then I fell, and I stopped working on the list. I’ve been working hard to get back, ever since I realized, about a year ago, how badly I’d let things fall by the wayside.

Now my life consists of a whole lot of remedial stuff. Recover stuff. Rehab stuff. Life as rehab. Each and every mindful minute of paying attention to what I’m doing — and why.

Every now and then, I also get the chance to help someone else out with their list, which is what I did on Sunday. A friend of the family is breaking up with their partner of 7 years, and they needed to move some furniture and reconfigure their living space.

My spouse and I drove out to their place and helped them get a number of large, heavy items out of their living room, as well as from upstairs to downstairs. When we got there, they were looking pretty ragged and depressed and overwhelmed. But by the time we left, they were a whole lot more relaxed and up, and they had their home office set up and connected, so they could get their act together. I’m glad we could help. And it felt great — after several months of regular exercise — to be able to lift and carry the sorts of heavy furniture we were wrangling. Recliners, with all that steel, are NOT light items to move. And trying to angle stuff through two narrow doorways was not the easiest thing. But we did it. And it was good.

This friend of ours (I’ll call them C) has been struggling with getting ahead and staying that way, for as long as we’ve known them.  They make progress, and then they make poor choices and slide back… Interestingly, back in high school and college, C played team sports — the kinds of team sports that frequently result in head injury. In fact, they told my spouse onetime that they had been hit in the head a lot, so their memory wasn’t the best. But whenever I bring up the topic if TBI  — with reference to myself, as I’ve told them about my history — they shut down and stop listening.

The other interesting (and a little tragic) piece of C’s story is that their ex-partner of 7 years was in a car accident within the last year, and they took to the bed with overwhemling fatigue, irritability, wild mood swings… and more. It sounded an awful lot like things were with me, when I had whiplash in the past. Their change in personality was eerily familiar to me.

I tried to talk to C a few times about the possibility of MTBI playing a role in the relationship’s degeneration. I said nothing about C’s athletic history, but I focused on the car accident. But C couldn’t hear it. They just blocked it all out. They refused to admit that there had been a real change, or that the change was physical and neurological, rather than psycho-spiritual. C is very much into “energy medicine” and thinks about health in terms of karma and past lives and energy. They think they can address substantive issues with affirmations and intention.

Which is a shame, because they might have been able to get some relief and/or come up with some alternative strategies, by addressing the physical and neurological after-effects of that car accident, and developed real-world coping mechanisms, rather than realinging their chakras.

Now, don’t get me wrong. I am a strong believer in chakras and energies and intention and affirmations. But I’m also a firm believer in the power of the brain’s neurology to wreak havoc with one’s life. I know the domain of the brain can be very scary for people — especially people who don’t have good insurance and/or can’t get decent medical care — but by leaving out that very important aspect of our overall health, problematic situations can escalate and become even worse, on down the line.

Unaddressed TBI issues can literally cost you your job, your home, your marriage… and more. Especially if folks avoid dealing with them up front.

TBI — even “mild” traumatic brain injury — isn’t the sort of thing you can necessarily wish away or “clear with intention”. I’m sure there are people out there who are very capable mind-over-matter practitioners, but as far as I’m concerned, it’s prudent to give the brain its due and not just brush off a brain injury as something that time alone will heal. Brain injures don’t just go away. And left unaddressed, they can cost you a lot that means the world to you.

I’ve experienced that myself… And I spent most of yesterday moving heavy things with someone who is experiencing it, as well. My aching back and joints can attest to it.

Well, at least we got things moved while the weather was still nice. And for all the hard work over the weekend, it feels great to be this functional again, after years of ennui and inertia and neglect. I feel like I’m really starting to get back in the game, in many ways. My life and my attitude and my outlook is very different than it was, before things fell apart in 2004-2005. But I feel like my life force is returning — and it’s actually good for something.

By the time winter comes, this year, I might just be ready for it.

Advertisements

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.

2D/3D Medical Animation: TBI – Traumatic Brain Injury Part 2

I’m feeling a bit low today… tired and overwhelmed and feeling down about how much of my life has been derailed by my invisible neurological challenges. I actually had a productive day at work, but now I’m really tired, and it’s starting to show.

I do want to post something tonight, tho’… I have a full day tomorrow and may not be able to post much, but I wanted to share this with you:

2D/3D Medical Animation: TBI – Traumatic Brain Injury Part 2 on YouTube.

Somehow, it makes me feel better to know that my invisible issues are well-documented as being very real.

Still, I am tired, so I think I’ll hit the hay early.

G’night, all

TBI and Fibromyalgia

I just found this blog talking about Fibromyalgia and TBI — Fibromyalgia Haven. This is of real interest to me, as this may be an issue for me, as well. I’ve been dealing with a lot of stuff over the years, including debilitating, chronic pain, but I never seriously dug into the fibromyalgia piece of it. I was provisionally diagnosed with an autoimmune disorder, back in 1987, after I started having a skin rash and intense joint pain, confusion, and various problems. It was also after a car accident that scrambled my thinking (I couldn’t understand what people were saying to me — I was intensely confused), and I ended up quitting my job so I could devote myself to drinking full-time.

Over the years, I have coped with the pain in various ways, primarily through what I call “analgesic stress,” and it’s been more or less effective. I just tend to block out the pain, now, after never getting any substantive help from doctors for my problems. I know folks with “fibro” but I never really considered it might be a factor with me — until I recently came across info about skin rashes coming with fibro. That rash that wouldn’t respond to ointments was what led doctors to diagnose me with that other condition — which was never substantiated by any of the many (and I mean many) blood tests I took over the years.

I don’t have time to go into this now, but I did want to link to the blog, for your reading enjoyment.

More attention for the invisible disability – TBI

Over at New York Brain Injury Lawyers, there’s a great post, Brain Injury The Invisible Disability

I’ve copied and pasted a fair amount of the post here (their content is indented), and I’m going to add my editorial commentary to it, as well.

Brain injuries can affect people’s compulsive nature and decision-making skills. It is a very sensitive area of personal injury law and quite rightly so. Brain injury varies greatly from person to person because each person’s injury allows for differing affects due to the location of the damage.

I love it that they start out on this note. It’s interesting how, of all the people who talk about brain injury, the people who seem to be the most sensitive to the issues and complexities are attorneys. Lawyers tend to get a bad rap, but in the big wide world of brain injury blogging and generally available information, I’ve found their sites/blogs to be some of the most helpful. Indeed, some of the most reliable and insightful and encompassing (as in, approaching the complexities of the situation without succumbing to the temptation to oversimplify) pieces of truly useful information (at least, for me) have come from lawyers. So, my hats are off to them — the ones who use their powers for good instead of evil, of course 😉

A traumatic brain injury is potentially one the most devastating disabilities. It not only affects the person suffering from the injury but can turn whole families upside down.

Amen to that. TBI does turn families upside down. It sneaks into the most secret and obscure places of one’s life, and it not only causes the affected brain to do and say things it wouldn’t normally say, but it often masks its effects by blinding the TBI survivor to the true nature of their words and deeds. I cannot stress this enough. We live in a society that lusts after self-determination and stigmatizes anyone who “can’t help themself” from doing or saying bad/inappropriate/embarrassing things. Our society is founded upon the idea that everyone has the ability to make themself and their world over in exactly the fashion they please. But though this may hold largely true, sometimes other factors come into play that are beyond our control. And that includes brain injury.

The range and severity of problems arising from a brain injury will vary significantly from person to person because every person’s brain injury varies in the extent and location of the damage. Some of the affects of a brain injury are not immediately obvious and only become apparent as time progresses.

Again, good information. It is so true that the range and severity can and will vary from person to person. No two bodies are alike, and no two brains are alike. It’s just impossible for them to be identical, as they are shaped by events and circumstances and body chemistry in unique and individual ways. So, the range of our injuries will vary… and the severity of our problems will, too. After all, the severity of our issues depend on not only the scope and nature of our injury, but also upon our own personality makeup — how we respond to different circumstances — as well as environmental factors. Things like jobs that allow us little flexibility in our daily schedule, financial difficulties that add stress to our experience, living environments that are intolerant of our shortcomings, and any number of other factors like the food we eat and the amount of sleep we get, can and will affect the degree to which we are impacted.

What’s more, some affects are not immediately obvious… subtle changes in mood, shifts in attentional ability, our cognitive capacity, our processing speed… these things aren’t always immediately detectable to the outside observer. What’s more, changes can take place over the course of one’s life, due to hormonal fluctuations and body chemistry changes.  The brain changes with age, just as the body does, and events like puberty and menopause (male and female), which alter the body’s hormonal makeup, can cause brain changes, as well, which can cause issues to arise that weren’t there before. If the part of the brain that is affected by a certain hormone was injured, and a scar develops, but that hormone remains relatively stable in the body over the course of one’s adult life… then it starts to fluctuate later in life, it could trigger some unexpected activities.

The following are pointers to look out for in a persons make-up if you feel they may be suffering from a brain injury after a nasty knock or have suffered a serious injury.

Note from BB: Keep in mind that even a “mild” brain injury, such as a hard bump or sudden impact or “whiplash” from a car accident (or even head-banging at a rock concert) can cause shearing of the connectors in the brain/brainstem, which can have the following affects. One of the biggest misconceptions about traumatic brain injury, is that it would have to be an open wound or something really dramatic, like losing concsciousness for hours or going into a coma, to cause problems. Trust me, you don’t have to teeter on the brink of destruction to be severely impacted by brain injury.

Cognitive changes
A brain injury can cause cognitive changes which affect the individual’s ability to learn new things, to work and to be able to interact socially.

So true! Some examples of this, from my own experience, are:

  • I have a hard time learning new things from books, because my short-term working memory has been compromised. If I’m reading something that’s new, and I divert my attention from it for even as short as a few seconds, I can completely lose the new information — and have to go back and start from scratch again.
  • I also have difficulty with sustained attention — I just can’t study the way I used to. I used to be able to study for hours and hours, and at the end of a long weekend of non-stop reading, I would have a new treasure trove of information to work with. Now, I’m lucky if I can last an hour with my reading.
  • I have difficulties at work, because I get so tired and I tend to space out when I’m fatigued. I find myself, sometimes, just sitting in front of my computer, staring at nothing in particular, or surfing around just for the sake of relieving my over-taxed brain. It’s not productive, but it’s unconscious, and I’m usually not aware I’m doing it, till I’ve done it for a while.
  • Social interaction is a tough one for me, because I have difficulties following people’s conversations at times, and I feel really self-conscious. I also get tired, being around people, and I find I cannot go into places I used to go fairly freely before 2004 — crowds have always distressed me somewhat, but since my fall in 2004, I’m even less tolerant of the noise and hubbub. Also, I have found myself isolating a lot more, over the past few years, and I’ve had trouble managing my emotions and words in social situations, which makes me even less inclined to venture forth.

Lack of insight
Individuals with a brain injury can have great difficulty seeing and accepting changes to their thinking and behaviour. The individual may deny the effects of the injury and have unreasonable expectations about what they are able to do.

I’ll say. Immediately after my 2004 fall, when my job had fallen apart, and I was in the process of quickly depleting my $250,000+ nest egg, I decided I was going to become a financial planner. Talk about a lack of insight! Not only did I not see that I was having an impossible time completing the self-paced work-at-home coursework — in 18 months, I managed to complete only 1-1/2 of the 6 courses, and I got a C on the one I did complete, which is totally out of character for me! But I also was oblivious to the fact that I was mismanaging my own funds so badly that I was quickly running out of money, when I could/should have been making money on it (after I prematurely cashed out of my shares — I walked away with $143,000 instead of the $700,000 I could have had, if I’d just managed to hang in with that job another 18 months — 18 months!!! — I put the money in my checking account that earned no interest and was open-season for my spending). I was doing a piss-poor job of managing my own money and planning what to do with it. What in the world made me think I could be a financial advisor/planner for anyone else? That’s easy — classic p0st-TBI lack of insight. Sheesh!

Memory problems
There may be problems in remembering people’s names, passing on messages, or recalling details read in a book or a newspaper. They may forget what they are doing from one session to the next. Memory problems may cause the individual great difficulties in learning new things.

Oh, please, don’t even get me started on this. If I don’t write down something in the moment, I might as well wave good-bye to it. I am, this very morning, trying to catch up with things I forgot to do over the past three days. If I lived alone or I was with someone who was less interactive and invested in keeping me on track, I would be lost. And quite possibly homeless and jobless, as well.

Poor concentration
A very common outcome is an inability to concentrate and to become easily distracted from what they are doing. This is usually because they are having difficulty concentrating.

Yes, yes, yes. My concentration comes in fits and starts. I found, right after my fall down the stairs in 2004, that I couldn’t concentrate to save my life. I was just flitting from one thing to the next, and I was utterly unable to learn the new skills I needed, in order to keep my job. Of course, I had no idea that I had been brain injured at the time, so I told myself — and everyone else — that I had chosen not to learn the things I needed to learn. I didn’t want to/couldn’t admit (or even see) that it wasn’t that I’d chosen to dig my heels in… I literally couldn’t. Because my concentration was totally shot.

Slowed responses
An individual with a brain injury may now be slower to answer questions or to perform tasks and may have difficulty in keeping up in conversations. Their capacity to respond quickly in an emergency may also be diminished.

Yeah, this is a problem. And it can be pretty scary, too, when you’re in an emergency situation. This has impacted me a number of times.  A couple of  times over the past ten years, in fact, I have had to help friends who were having strokes, but both times, I couldn’t seem to put two and two together. I couldn’t seem to figure out what was going on, and it’s lucky for them that there was someone else there, in both instances, who could see what was happening and come up with an appropriate response. The feeling of being turned around and not being able to respond quickly in such a life-threatening situation is scary enough at the time, but afterwards, it can really haunt you. It’s certainly haunted me. In fact, my inability to respond to a number of emergency situations — some of them life-threatening — was one of the things that “raised a red flag” with me and told me something was just not right with how my brain was working.

Responding to questions and keeping up with conversations is very important when you’re dealing with authority figures and law enforcement, I have found. One of my recurring issues with regard to my TBI is run-ins with the police that nearly went sour, just because I wasn’t following what the officer was saying to me. You have to understand, I’m a very law-abiding citizen. I believe the law is what makes our society livable, and I make every effort to obey it. So when I mess up, go faster than I should, miss a stop sign, or take a left turn too closely, and I get pulled over, I am genuinely confused, because I certainly did not intend to screw up. And my confusion makes it harder for me to focus on the situation, as well as follow the officer’s directions. I have nearly gotten into physical confrontations with cops because of my confusion and frustration and short fuse. I knew better, but my brain failed me at the time when I needed it most. This is probably one of the suckiest things about having a brain injury (or, in my case, several) — it keeps me from being the kind of person I desperately want to be, and from living the kind of life I am determined to live.

On the less dramatic side, with regard to being slower to respond to questions and finish tasks, it can take me forever to get my head around things I’m being asked. That drives my family nuts, and I have a tendency to try to cover up my cluelessness and slowness, so I don’t piss them off. But when I really want to get something, I’ll make them slow down. I also have to be ready to remind them that I am a bit slower than they expect, and they need to not get so upset with me about not following as quickly. Sometimes, they yell at me because I’m “being difficult” when I’m just a lot slower than I’d like to be.

I also often have trouble keeping up with conversations. I can’t tell you how many times people have started talking to me, and I haven’t had a clue what they were saying… for about a minute into the conversation. I tend to have to replay conversations later on, to see if I got what just happened. Socially, I’m fortunate that I have a lot of really gregarious friends who do most of the talking. I just sit back and let them do most of the “work” — and they’re fine with that. Either that, or when I’m in a conversation with someone that I’m just not following, I’ll actually just echo back what they’re saying without fully understanding what they’re talking about. I will appear to agree with them (which they like), but I’m actually just rephrasing what they’re saying. This makes me very popular (people like to be mirrored and they love it when other people agree with them!) but it doesn’t do much for my own sense of self.

Problem-solving
Individuals with a brain injury might have difficulty solving problems and planning and organising things they have to do. They may encounter trouble with open-ended decision-making and complex tasks need to be broken down into a step-by-step fashion.

Oh yes… breaking things down. Can I tell you, my life is filled with detailed step-by-step instructions about how to do the simplest things. When I need to organize my busy day, I fill my planner with the different things I’ll need to do, in the order that they need to be done, and I walk through them in precisely that order. I cannot tolerate changes in routine — it makes me nuts and freaks me out. I desperately need predictability and routine, because backing up and re-configuring my day is a recipe for disaster.

Irritability
Individuals may also have a very low tolerance for frustration and can become easily agitated and may lose their temper quickly.

Yes, yes , yes. Never forget that fatigue factor. Being tired not only makes it harder to think, but it makes it harder to manage emotions and modulate your expression. The thing with me is, too, that my TBIs have made me look more impassive and stoic on the outside than I feel on the inside. So, I may be seething with frustration on the inside, but I look perfectly fine on the outside, so people around me cannot judge my level of frustration — until I blow up.

Another thing that ‘stokes my fires’ is the pain that I’m often in. I have a lot of pain in my body that isn’t helped by drugs or much of anything other than rest. When I’m fatigued, I’m often in extreme pain, which just adds to my irritation level.

Irritation is a huge problem — for me as well as others, because I never, ever want to hurt the people I love, but my irritability gets the better of me all too often. And I have to live with myself afterwards.

Socially inappropriate behaviour
People with a brain injury may no longer know how to act or behave in in social situations. This can be incredibly difficult for families to understand and cope with, particularly as they may no longer recognise their loved ones and not understand their behaviour.

I have screwed up social situations so often, that now I just tend to keep to myself and I don’t respond unless others address me first. Some of the many things I’ve done that have landed me in hot water are:

  • Talking too loud about sensitive issues
  • Forgetting that I promised to keep a secret, and telling the world — in front of the person to whom I promised I wouldn’t tell
  • Behaving in ways that women felt were too familiar or encroaching or sexually intimidating
  • Behaving in ways that men (including security guards and police officers) considered threatening, and triggered an aggressive response from them
  • Coming across like I was making fun of or deliberately embarrassing family members

I really, really hate this aspect of TBI, especially, and it makes it easier for me to just keep to myself. It’s tough, because I want to be social — who doesn’t? But I do it so poorly, at times, that I feel it’s my responsibility to shield others from my ineptitude.

Communication
A wide range of social skills may be affected by an a traumatic brain injury including the ability to have conversations, to interpret and respond to social cues, to show interest in others, to use humour appropriately, and to regulate the volume and tone of voice.

Uh, yah. See above for how my TBI affects communication issues. I generally don’t initiate conversations, and I’m terrible at sustaining them. Good thing I live with very social people who can run interference for me. I usually don’t stray far from them, as I tend to get into trouble with people, when I try to initiate and sustain conversations. At times, I just don’t know what to say. I’m like a little lump of clay that isn’t able to create impressions on others, but can be impressed upon by others. I generally stick with just responding to people’s cues, but even then, I’m often totally lost, and I simply don’t follow. I also am often strangely devoid of interest in other people. Oh, certainly, on a grand cosmic scale, I do care a great deal about what others experience/think/feel, but personally, in my injured brain, part of me just doesn’t care. I want to care (I think), but I just don’t. I’m sorry, world. I just don’t.

I also don’t always use humor appropriately. I usually think I do, but then I find out from others that I don’t. Heaven help me — and everyone around me, who has to put up with my sense of humor when I’m tired.

Regulating my tone of voice is a constant challenge, which is another reason I keep quiet so much. I often use the exact wrong tone – I’m too loud in quiet situations, or too quiet when I’m talking about important things… I sound angry when I’m just riled up… I sound deadpan/stoic when I’m really worked up. In some cases, people I live with have been very afraid of me because my tone was a lot more intense and sounded “hateful” and aggressive, when I was just having a lot of trouble articulating, and I was scared half to death over something. I’m hoping that my family members will learn that my tone doesn’t always match my inner reality, and cut me some slack.

Depression
Depression in an individual with brain injury is a very common emotional consequence that usually comes some time after the injury. Signs of depression include lack of motivation, loss of sexual drive, sleep disturbance and tearfulness.

Okay, here’s one of my pet peeves — interpreting neurological processes with emotional ones. Lack of motivation is not necessarily depression-related, nor is loss of sexual drive, sleep disturbance, or tearfulness. There are a host of neurological reasons why all these can occur, and the fact that they’re commonly lumped together under “depression” tells me that there are probably a lot of people walking around with neurological issues that could be possibly addressed with occupational therapy or other coping mechanisms, but they’re being medicated, instead.

Unraveling neurological issues from psychological ones is in the Top Ten Things I Hope to Promote in This Blog. Calling our neurological, TBI-related issues “psychological” ones and addressing them with drugs just empowers the pharmaceutical companies, not the people who have to live their lives. Don’t get me wrong — I have nothing against a quality pharmaceutical solution. But too often pills are pushed as a solution, when they just add to a problem — like Prozac making certain people suicidal.

Mis-diagnosing neurologica/TBI-related issues as psychological ones and inappropriately medicating patients actually works against the pharma companies, as well. It makes them suspect, when the real culprits are lazy/mis-informed/biased/idiotic psychiatrists/therapists/doctors and it prevents good science and good medicine and good psychotherapy. I want good pharmaceuticals as much as the next one — but I want their power used properly and for good, instead of lazy-assed evil.

Headaches
There are multiple sources of head and neck pain, both inside and outside the head. Headaches arising from a brain injury can be caused by a number of reasons.

When don’t I have a headache? Rarely. Of course, one of the neuros I’ve seen over the last year tells me they’re stress related, and if I just relax and exercise more, they’ll go away. Hasn’t worked so far… Hasn’t ever worked.

Visual problems
Vision and visual functioning is often adversely affected by brain injury. Some of the more common visual systems problems include double vision, rapid eye movement and near-sightedness.

Can’t speak to this much, aside from rapid eye movements I sometimes get when I’m overtired.

Hearing problems
Hearing problems can occur for a number of reasons, particularly when the inner ear and/or temporal lobes have been damaged.

And let’s not forget tinnitis — that constant ringing in the ears. True, it can be more neurological than auditory, but it’s hearing-related. For the record, I have — and always have had — constant ringing in my ears. Sometimes it’s louder than others, but it’s always friggin’ there.  It used to drive me nuts when I was a teenager, but I have since acclimated to it. Now I use it as a barometer of my physical condition — louder means I’m having issues of some kind — stress or fatigue or what-not. It’s actually a useful gauge of my physical well-being. Provided I can tolerate the constant high-pitched whine.

A traumatic brain injury is often called the invisible disability. As there are frequently no outward physical signs of a disability, effects such as fatigue, lack of initiation, anger, mood swings and egocentricity may be seen simply as bad personality traits by others. It is easy to see why a traumatic brain injury can be such a devastating disability, especially when the disability is not obvious to others.

Indeed. In fact TBI is often a double-hidden disability, as it’s so often hidden from the survivor, themself. It’s a real conundrum, let me tell you. Society has so many biases against behaviors and problems that can come with TBI, it can be all but impossible to get people to consider you injured, rather than bad. The real challenge, from where I’m sitting, is learning to detect and live with my own disabilities, find my strengths, and ultimately, finding peace in myself, no matter what the rest of the world has to say.

And if I can get through the day without doing any harm, so much the better.

TBI can be a devastating experience, both during and after — in the short and long-term. But if you can get past the trauma of it and learn to deal with it substantively, it doesn’t have to ruin your life. And the pieces that have been broken, can sometimes be put back together again. Ultimately, the brain is a fascinating phenomenon. We all have one. And the challenge — for us all, at this time — seems to be learning how to use it properly.


Technorati Tags:
, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,