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.
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