Thoughts on getting help for TBI

When I checked my email last night, I was pretty shocked to see that a public figure I really admired had died unexpectedly from a head injury. Out of respect for the deceased, I’m not going to use their name. Yes, it would probably drive a lot of traffic to my blog, but I don’t feel like taking advantage of their situation for the sake of my stats. You probably know who they are, anyway.

Having been in numerous situations, myself, where I had hurt my head but I had no idea how badly, I have to say that it really is very difficult to tell how bad an injury is — especially when the injury affects the reasoning part of the injured party.

Everyone around you might be saying, “Are you okay? Are you alright?” and they’re genuinely concerned, but you just want to get away from all the commotion, lie down, and settle down. You don’t want to be bothered by all the hullabaloo, which — to your injured brain — can be very confusing, very aggravating, very anxiety-producing. It can just be too much to process. And if emergency medical teams are involved, the drama can be so disorienting, so confusing, so annoying, that it’s a relief to just get them to go away.

With me, when I fell in 2004, about the last thing I wanted, was for people to fuss over me. And I declined both help and attention for a number of reasons:

  1. I didn’t want to be bothered by all the drama of an emergency room, when I was just a little wobbly. I figured I just needed to collect myself and shake it off, and I’d be fine.
  2. I didn’t want to make a big deal out of things, when all I had done was fall down the stairs and bump my head. I had fallen plenty of times throughout my life, and I had never rushed off to the hospital before (tho’ it turns out I probably should have).
  3. I wasn’t sure that I could get the proper help in the town where I was visiting. This was because I wasn’t sure about the quality of medical care available in that relatively rural location and because I wasn’t sure, myself, how to describe my symptoms.
  4. I didn’t want to interrupt my schedule — I was packing to go home after a very demanding holiday celebration — over something as dumb as a fall. I really just wanted to go home.
  5. Nobody knew how badly I’d hurt myself. I was too out of it to tell just how I was, and the folks who were with me didn’t know enough about concussion or head injury to judge my condition.

Things might have been different for me, if we had all had more information about head injury, if we had known the signs, if we had had access to high quality medical care, and if there hadn’t been all sorts of other competing activities going on. As it was, in the case of my fall in 2004, everything added up to me not getting help for my problems, and proceeding to lose an awful lot of important elements of my life.

I’ve had other similar experiences, as well — particularly with car accidents. The three different car accidents I was in, that had noticeable after-effects, were never enough to slow me down or stop me for long.

The first one I had in 1987 had the immediate result of confusion, inability to understand what people were saying to me, and loss of ability to work for a number of weeks. I just couldn’t keep it together. Eventually, I was able to get back into the swing of things with work, and I was able to get back to normal functioning. But that was only after a couple of months of screw-ups on job interviews, missing cues, drinking a lot, and generally being a wreck at home.

The second accident I had in 1989 left me spacy and confused and having a hard time finding my way to the train station I was going to, after the accident. I also had a very sore neck — more sore than usual — and I didn’t feel quite right. But I still pushed through and went about my business.

The third one in 1996 also came at holiday time, in heavy Thanksgiving traffic, and immediately after it, I had a really hard time focusing, and I couldn’t for the life of me read the forms I had to fill out to send to the car rental agency. I just checked some boxes and signed the form and sent it in, hoping that I’d gotten it right, but not knowing for sure. I also started to lag at work, and I dropped a lot of projects I had started, without really understanding why… or properly assessing how important the fact was, that I was dropping them.

Every time I’ve fallen or been hit or had an accident, I’ve never actually received proper care afterwards. When I was a kid, people didn’t know about concussions. They didn’t know what to look for, and they didn’t properly estimate my need for help. Also, when I was a kid, I didn’t want to draw attention to myself and look like a “sissy” just ’cause I had gotten hit on the head. And as an adult — perhaps because of the series of re-injuries — I’ve never aggressively followed up on my symptoms and gotten medical help after my accidents.

Thinking about it within the context of our North American culture, I have to say that our world is not particularly well-suited to treating head-injured people. Our movies are chock-full of images of head trauma that has no consequence whatsoever — people are always getting punched, slammed, hit over the head, tackled, and generally taking a lot of punishment above the shoulders — all without apparent side-effects. Our sports are violent and often include plenty of blows to the head as a matter of course. Football and soccer and ice hockey are tailor made for getting hit on the head, whether through tackles, moving the ball up the field with a header, or assaulting an opponent to gain possession of a puck. Falls and bumps have entertainment value, whether it’s in a commercial for a carbonated beverage or it’s slapstick comedy or it’s in kids’ cartoons. When I think about how many images of violent assault and “fun” head trauma I saw just on Saturday morning cartoons — Elmer Fudd really took a beating over the years, and I’m surprised he survived — it’s no wonder that when I fell, myself, all those times… or got hit on the head… or experienced some tackle or hit or accident that “rang my bell”, I instinctively shook it off and declined help.

Now, I wish I could say, after all these experiences  (and knowing what I know now about traumatic brain injury) that if it ever happens to me again, I’m going to do the right thing and seek medical help. But I’m not sure I will. I’m not sure I’ll be able to. When you’ve been hit on the head, your thinking can get so foggy, your judgment can be so muddy, and you can be so irritable and, well, non-compliant… that your better angels don’t have a chance to step in. Those angels may be your instincts or people around you who care about your welfare, but in either case, when you’re head-traumatized, you can be ornery and contrary and refuse any kind of help and get very agitated if those “angels” press you to assist.

It’s a conundrum. One with consequences, as too many people find out regularly. Whether they’re the head-injured person or their family or friends or co-workers, they are impacted to some extent.

Perhaps the only hope we have is education. Information… Well-informed judgment. And the willingness to endure the wrath of head-traumatized individuals (who have no idea how much help they really need) and not quit insisting they get help… until they do.

Of course, even if they do get help, the quality of it is dependent on the medical team assisting. And if you’re stuck with a doctor who’s clueless about head trauma and thinks, “Oh, everything will be just fine, so long as you didn’t get knocked out for more than 2 minutes,” and gives you some aspirin and sends you home to rest, all the perseverance in the world only goes so far.

Dealing effectively with head trauma needs to be a team effort. A prioritized team effort undertaken by people who know what the hell is really going on. It’s a goal worth working towards.

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Stress So Bad It Hurts — Really (From WSJ)

Stress So Bad It Hurts — Really

“I think your real problem is stress,” the doctor said when I complained that the muscle injections he was giving me hadn’t relieved my neck and shoulder pain. “You can’t blame me for everything that’s hard in your life,” he said.

My bursting into tears only seemed to confirm his diagnosis.

It’s not like I hadn’t heard this before. During earlier bouts of low-back pain, irritable-bowel syndrome and temporomandibular joint disorder, plenty of doctors have used the stress word with me. And each time, I’ve become indignant. It sounded like “it’s all in your head” or “you’re malingering.”

That’s an outdated view, says Christopher L. Edwards, director of the Behavioral Chronic Pain Management program at Duke University Medical Center. Decades ago, when doctors said a condition was psychosomatic, it was the equivalent of saying it wasn’t real, since there was little evidence that the body and the brain were connected. “Now, we recognize that what happens in the brain affects the body and what happens in the body affects the brain,” he says. That knowledge gives us the tools to try to manage the situation, he adds.

Dr. Edwards says his pain-management program in Durham, N.C., is seeing a rise in patients amid the current economic crisis: “There’s a very strong relationship between the economy and the number of out-of-control stress cases we see.”

From Stress to Pain

Psychological stress can turn into physical pain and illness in a number of ways. One is the body’s primitive “fight-or-flight” mechanism. When the brain senses a threat, it activates the sympathetic nervous system and signals the adrenal glands to pump out adrenaline, cortisol and other hormones that prime the body for action. Together, they make the muscles tense up, the digestive tract slow down, blood vessels constrict and the heart beat faster.

That’s all very useful for outrunning a mastodon. But when the threat is a tanking stock portfolio or an impending layoff, the state of alarm can last indefinitely. Muscles stay tense and contracted, which can make for migraine headaches, clenched jaws, knots in the neck and shoulders, and pangs in the lower back. Some of those body parts are already under pressure from long hours at the computer, restless sleep, grinding teeth and poor posture.

The Gut Brain

The digestive tract has its own extensive system of nerve cells lining the esophagus, stomach and intestines — known as the gut brain — that are extremely sensitive to thoughts and emotions. That’s what creates the feeling of butterflies in the stomach. When anxiety persists, it can set off heartburn, indigestion and irritable-bowel syndrome, in which the normal movement of the colon gets out of rhythm, traps painful gas and alternates between diarrhea and constipation.

“Stress does not necessarily cause pain, but it exacerbates the [physical] situation that may already be there. It diminishes your ability to cope,” Dr. Edwards says.

Stress also creates biochemical changes that can affect the immune system, making it underreact to viruses and bacterial infections, or overreact, which can set off allergies, asthma and skin disorders like psoriasis and eczema. And stress can raise the level of inflammation in the body, which has been associated with heart disease. A recent study in the journal Psychosomatic Medicine found that stressful conditions even in the teenage years can raise the level of C-reactive protein, a marker for inflammation that increases the likelihood of cardiovascular problems later.

There are plenty of ways to short-circuit these harmful effects of stress. One of the best is physical exercise, which not only releases the feel-good neurotransmitters called endorphins, but also helps use up excess cortisol and adrenaline. Under stress, “there’s a large amount of negative emotional energy in your system that is trying to find a way to discharge,” says David Whitehouse, a psychiatrist and chief medical officer for OptumHealth Behavioral Solutions, a unit of UnitedHealth Group Inc. He adds that “stress kills brain cells. The body responds by making new ones, and exercise can help activate them and make new connections between them.”

Sleeping and Eating

Many experts also recommend getting plenty of sleep, eating regular, balanced meals and keeping up social connections — all things that people tend to forgo in times of stress.

Biofeedback, once considered alternative medicine, is now accepted in mainstream medical circles as a way for people to reduce the impact of stress. Dr. Edwards runs a biofeedback laboratory at Duke, where patients monitor their heart rates, respiration, temperature and other vital signs and learn to control them with relaxation techniques. “The goal is that once we teach you to do that, you can use it the rest of your life,” he says.

Another form of biofeedback is called Heart Rate Variability Training, which teaches people to adjust their breathing to maintain an optimum interval between heart beats that induces a feeling of calm throughout the body. “It’s probably similar to what happens in yoga and meditation,” says Dr. Whitehouse.

He adds that there is much new research going on in the field of “emotional resilience training” to help people learn to lower their anxiety levels and recover from setbacks. “People spend huge amounts of money, time and energy training their cognitive brains. What we now know is that the emotional brain can be trained as well to become more resilient,” Dr. Whitehouse says.

Emotions play a major role in how pain is perceived in the brain. In the 1960s, Ronald Melzack, a Canadian psychologist, and Patrick David Wall, a British physician, offered a groundbreaking theory after observing soldiers in World War II. “Two soldiers with nearly identical injuries from the same bomb blast would be sitting side by side in a hospital ward,” Dr. Edwards explains. “One soldier would be saying, ‘Hey doc, can you sew me up? I need to get back to my unit.’ And the other would be crying, moaning and writhing in pain.”

Drs. Melzack and Wall determined that chemical gates in the spinal cord control pain signals from the body to the brain, depending largely on patients’ emotional states. Positive emotions diminished the perception of pain, while negative emotions kept the gates open — sometimes continuing the pain even after the initial cause had disappeared.

Fear Versus Fact

There’s a growing consensus that cognitive behavioral therapy can be very effective at diffusing negative emotions. It works by examining, and challenging, the thoughts behind them. “We’d say, ‘I understand your fear, but fear is not a fact. Let’s look at the reality in your life,'” says Katherine Muller, a cognitive therapist and director of psychology training at Montefiore Medical Center in Bronx, N.Y.

It’s no surprise that being told that pain is stress related feels like an affront, Dr. Muller says. “There’s this idea among high-functioning people that ‘I’m a good coper,’ and these symptoms suggest that you’re not,” she says. Indeed, many successful people find that low levels of stress and worry help them function. “But in periods of high stress, that worry takes over and becomes the dominant feeling. You’re still going to work. You’re still doing stuff for your family, but it’s taking a toll. And suddenly your body is saying, ‘Whoa — I can’t take the tension any more,'” Dr. Muller says.

One technique she uses is to have patients keep a diary evaluating their stress level on a scale of zero to 10 several times a day and note what was happening at the time. Patterns may emerge — that headache may set in every Thursday afternoon, after the staff meeting — and there may be ways to change the situation. “The message I’m trying to send is that you are responsible for your own stress,” says Dr. Muller. “The way you are looking at it and feeling about it is more up to you than you realize.”

So is stress-related pain all in your head after all? “All pain, and all human experience, is in your head,” says Dr. Edwards. But that’s a message of hope, he adds, since there are now ways that weren’t available 60 years ago to ease pain by managing thoughts and emotions.

All right. Sew me up, doc. I want to get back to my unit — I think.

Diving Into My MRI

I spent time yesterday studying my MRI, comparing my brain with pictures of normal MRI’s I found online at Google images. What a treasure trove Google is! Just being able to find pictures of what “normal” looks like has been a great boon to me.

Looking at MRIs can be very trippy, and looking at my own brain is kind of spooky. From looking at it, the untrained eye could easily become very disoriented and alarmed. But knowing what other normal MRIs look like is very helpful. How else would I know that I’m not a freak of nature? The brain is just so fascinating!

It’s so great to find descriptions of the normal brain MRIs, since it can be hard to figure out what you’re looking at. I’ve got a used textbook on neuroscience I picked up, as well as a copy of Netter’s Atlas of Human Anatomy, which is a hefty tome of highly detailed drawings (done by Dr. Netter) of virtually every part of the human body, which also have every little piece clearly marked and labelled. I look at my MRI, then I consult my Netter’s book, then I Google the part of my brain that I think I’m looking at and read about it, and then consult my neuroscience textbook, to read more in-depth information that’s at a student level. Fascinating.

But I’m surprised to be having such a hard time finding information on reading MRIs. Maybe I’m not looking in the right places. Maybe that type of information is too advanced to be safe to release into the public, lest we all fire our radiologists, start reading our own MRIs, and jump to conclusions about ourselves. I’ve already had people look askance at me, when I told them I was going to be studying my MRI. They clearly seemed to think that I’m not qualified to do it, but I figure, why let that stop me? I’m not getting paid by anyone to ply that trade, and I’m only interested in my own situation, and it’s really just for my own gratification, so I’m not letting their skepticism stop me. It’s my body. I’ll study it to my heart’s content.

I know there’s no substitute for a qualified neurologist or radiologist, but I really need to understand what’s going on with me, and nobody seems to have the time to spend with me to make sure I’m clear on what’s going on. It’s very discouraging to have this level of testing done, only to not be able to find someone to help me understand it. The neuro I saw a week ago wouldn’t give me any more information, other than that my tests read as normal. I asked if they could show me the film, but they brushed me off. Maybe they thought I’d be looking for something that doesn’t exist… malingering and all that. I’m not malingering. I’m curious! And honestly, I don’t want to milk this and make myself out to be sicker than I am. I just want to know why my life experience is so different from what I hear everyone else describing. I want to know why I have the many, many issues I’ve got. I want to know what makes my brain unique — and treat that uniqueness as a strength, not a weakness. And having MRI images to help me gain just a little more insight into my situation seems like a great opportunity to learn more… even/especially if what I learn is that my variations on experience are “within normal range” and not the sort of thing I need to be concerned about.

I did find some pictures of my brain that I have questions about. Places where there are asymmetries and/or dark/light spots that might be old injuries or some abnormality. The part of me that’s been on high alert — or hovering around there — is eager to run off to a neuro to get the spots and dots and bright places explained… to explain how the asymmetries in my brain might translate to some irregularities in how my mind works. I know I need to calm down, get some rest, let it all sink in. There’s no tremendous hurry, now that I know that I’m not in imminent danger from a brain tumor or MS or some other terrible neurological condition. I can relax, now. And I need to make more of an effort at doing that.

In the meantime, while I recover from my over-excitabilities, I’ll think about my next steps. Study normal MRIs online, look around, just do the whole visual image thing, getting my eyes used to the sight of MRIs, so when I do get a chance to talk to a neuro about my results, I can sound at least moderately intelligent. I’m thinking about contacting that last neuro I went to see — the one who treated me like I was looking for drugs, who has since apparently recanted their attitude towards me and offered to help me “in any way” they can. I may give them another chance — but next time, take someone I trust with me, and ask the neuro to just walk me through the high-level points of my MRI. There are some things that are grabbing my attention, and I would like a little bit of an explanation.

I really need someone to read it who knows how to interpret the orientation of the images. I think MRIs may give you a mirror image of a body part, so the left side of the picture is actually the right side. At least, that’s the impression I get from reading descriptions of MRIs that show clear anomalies on the left side… but the text talks about right-side issues. It gets confusing. One side of my brain is shaped a little differently than the other, and I’m not sure if my right side is lop-sided, or if it’s my left. I think it makes a difference, too, which side is varied from the “norm” — left and right sides have different functionality, or so I understand, and if I’ve got developmental issues with one side of my brain, then knowing about them might help me better understand and manage my own issues.

It could be that I’m on some wild goose chase, and that all the differences in my brain are in fact quite normal. But looking at my pictures and comparing them with other MRIs, my head is kind of lop-sided, and one side of my brain has a noticeably different angle than the other side — between the lower frontal/parietal lobes and the temporal lobe that sits beneath it. I’ve got some asymmetrical bulges, and in some places, one part of my brain looks like it’s been crowded by another part that is not shaped the same way as others’ normal pix. It is considerably wider and looks bigger than I’ve seen elsewhere, so that just makes me wonder.

I don’t think it’s a bad thing, having parts of my brain differently arranged than the norm. If anything, it’s probably an advantage. Even if my brain developed differently over the course of my life, it hasn’t completely stopped me from living my life, and no one would probably ever guess that it’s developmentally different. I’ve been far too successful in my life, far too resilient, far too capable, far too adaptable, far too effective, all across the board, for any sort of developmental differences to be a liability. If anything, my differences are a strength. And I’d never part with them. Not at all.

Looking at all these “normal MRI” pix, I have to wonder… What is normal, anyway? If you think about it, the chances of anyone turning out the same way as other people are just so slim. The human body is an amazingly intricate and sensitive system that can be impacted by unseen, invisible forces that we don’t recognize for a long time, if we recognize them at all. We’ve got billions and billions of cells constantly growing and changing and multiplying, we’ve got tons of distinct body parts, we’ve got so many different bodily functions, many of them invisible to us. And we’ve got not only our internal world but our external world to deal with and factor in. Some days, I’m amazed that the human race — or, for that matter, any living creature — makes it through a single day.

Lots can go wrong. Lots can change us. Lots can affect us and our development. But variations are what keep the human race viable. The healthiest living systems have a lot of variety in them, and I would expect that variations in brain development are critical for a healthy system, as well. Even if those variations appear to be “disabilities” or some other sort of rare deviation. The human brain is an amazing organ, and not only can it do things we cannot even begin to imagine possible, but it can also accommodate a whole lot of additional variations and bounce back from injuries, with neuroplasticity and remapping functions and other mechanisms we haven’t even begun to name. (I haven’t done a plug for The Brain That Changes Itself by Norman Doidge, in a few months, so I’ll mention it here — if you have doubts about the ability of the brain to adapt, then you should definitely check it out.)

So, even if my brain is developmentally anomalous, and even if it got broken along the way with those hits and falls and accidents, and even if it gets tired and overwhelmed and doesn’t know where it is, sometimes, it’s still mine. It’s what I have to work with. And so far, injuries and accidents notwithstanding, it’s still going strong.

The best cure for self-pity

Just when I’m starting to really succumb to the poor-me’s, I get an excellent reminder of what I really have going for me. It’s true, being a multiple MTBI survivor hasn’t made my life any easier, and I do have a lot of issues I need to overcome. But I’m also highly functional, I have full use of my body, I’m not laid up in a hospital or rehab, and I’m able to fend for myself.

My life isn’t perfect, by any stretch, but it’s a far sight better than it might have turned out, had my falls and injuries been worse. I really believe that I was divinely spared a lot of disaster over the course of my life — for what reason, I’m not sure. I’ve come close — so close — to being badly hurt, attacked, arrested, institutionalized, even abducted (when I was a kid and wasn’t very prudent about whom to talk to and how to interact with people)… not to mention sued and fired and a lot of other things people could do to me that would really mess up my life. Time after time, when I think back, I’ve narrowly escaped serious damage, literally through no effort of my own.

And I wonder, why was I spared? Why am I walking around in okay shape, after those car accidents, those falls, those attacks? Why am I able to walk through life on my own steam, when so many others are unable to do so? Why have I been given so much and allowed to keep so much of what I could (and perhaps should) have lost along the way?

What makes me any better than, say, the thousands of troops returning from Iraq and Afghanistan, who have really severe injuries — some of which cannot be detected from outside their heads?

What gives me the right to live as fully as I do, when others who experience the kinds of car accidents I was in are watching their lives fall to pieces before them, unable to think, remember, function, or even walk around a grocery store without sunglasses on?

What can possibly justify the fact that I’ve managed to keep my house, my family, my car, my job(s), even in the face of a debilitating head injury? What makes me so deserving, so special, so… worthy of all this?

I just don’t know. I look around me at the other folks who have sustained head injuries – from mild to severe – and I marvel at their resilience. I’m not sure I could hang in there the way they have. I look at the pictures and read the accounts and try to put myself in the shoes of folks who have to overcome not only the loss of their memory and their life savings, but also their most basic bodily functions.

And I am both humbled and chastised. The problems that I have — the slowed processing speed, the lousy short-term memory, the inability to concentrate on things longer than half an hour at a time, the chronic pain, the sensory sensitivities, the temper flares, etc. — as challenging as they may be, still allow me to move about the world on my own steam. They may keep me from being fully functional, but they don’t prevent me from looking and acting fully functional (which in our superficial world, is 3/4 of the battle). And as rough as looking for more work may be, the fact that I actually can look for more work, is a gift I mustn’t take for granted.

Who can say why I was spared a worse fate?

Who can say why I was knocked out for only a few minutes, rather than a few hours?

Who can say why my fall out of that tree in 1980 didn’t break my back?

Who can say why the hits I took in high school sports weren’t more serious?

Who can say why my car accidents derailed me for a shorter time than others’ do?

Who can say why I was able to hop up after my fall in 2004 and say, “I’m okay… I’m good,” and get on with my life — even if the getting was a lot less good than it was prior to my fall?

I don’t have the answers to those questions. And there’s this little voice in my head that’s warning me away from comparing myself — favorably or unfavorably — with others and their situations. We all have our challenges, and we all have our limits, and it’s not really for us to judge which is better or worse, which is easier or harder, or even if we deserve what we got.

All I know is, things haven’t been easy for me. But they haven’t been as hard as they could have been. I’ve been spared, and while I do wonder why I rate that, the bottom line is that my difficulties have made it possible for me to understand what it’s like to struggle terribly with things that others cannot see. I know, first-hand, what it’s like to be lost and alone and afraid and totally invisible to the rest of the world. I know what it’s like to live, day after day, wondering if I’m going to lose everything because of some mysterious difficulty I can’t put my finger on. I know what it’s like to be abandoned by people who were supposed to help me, and treated like shit by mean-spirited people. I know what it’s like to be preyed upon because someone senses I am at a disadvantage in life.

And since I know first-hand what all this is like… AND I am still pretty high functioning, I’m in a really great position to help. My brain is broken, sure. But my brilliant mind won’t quit. And since I can write and use this blog and I know how to get the word out online about this TBI stuff, it puts me in a really great position to educate and inspire and hopefully assist others.

God, but this world can be a lonely, confusing, depressing place. But in the worst of times, it’s so very important to identify our strengths and our gifts and pitch in to help others who are in need. I haven’t the faintest idea why I have been spared the fate of so many others like me, who had the same types of experiences but have it much worse. But it’s not for me to know.

All I can know is, I’m a survivor (dammit!), and I have abilities and talents and resolve that I can put to good use for others. I have an extra hour or two in my day that I can spend blogging before I go to work. I have a job that lets me grab a few minutes, here and there, througout the course of my day to examine my life and figure out what works — and what doesn’t — with regard to my broken brain. I have been given  wonderful gifts of resiliency, determination, stubborn faith, insatiable curiosity, and the ability to overlook my own personal pain — physical and emotional — in the service of a cause greater than myself.

I know how to function in this life, in spite of a long history of brain injuries and the personal/physical/social/emotional/financial complications that arise from them. I’ve devised coping strategies (usually from sink-or-swim situations) that have really worked for me. I’ve figured out how to find jobs and stay employed, how to make money and pay for big-ticket items, how to appear functional in the world, how to interact with people well enough to get by, how to support my memory and work with my uncooperative body, and more. I’ve had to face down a lot of real challenges, but somehow I’ve managed to overcome them. And I love to write… so what better position could I be in, than to blog about it all and hopefully toss someone a little help from my own personal experience?

So, rather than sitting around and feeling unworthy and useless and undeserving because I’m able to function well, while other flounder and founder, I think I’ll just get on with my life, get on with my day, and use what I learn for the benefit of others.

God knows, we can all use a little help. And what a shame it would be, if I were the only one who benefitted from the lessons I’ve learned!

EEG and MRI are both normal!

Woo hoo!

I had a visit with my new neuro on Monday, and they tell me that my EEG and MRI both read as NORMAL.

There is no sign of a brain tumor.

There is no sign of MS.

There is no sign of degenerative disease.

I’m way symmetrical and looking good.

At last, I’ve got some actual testing and numbers to show for all this. Enough of the guesswork — I’ve got plenty of notes and detailed observations about my life, but no doctor apparently has the time or inclination to sort through them all.

Plus, with my over-the-top attention to detail and fixation on things that are experientially important (but probably medically insignificant), who knows if anything I’ve recorded is even any use to them at all?

God, I love minutiae. But it doesn’t love me 😉

Anyway, I’m trying really hard to stay positive through all this. I think that part of me would have liked to see at least a little bit of “variation” on my test results, so I have concrete proof that something unusual is “up” with me.

But this is actually one of the things that makes TBI such a conundrum for folks — both medical doctors and people who experience it. Your test results can come back looking great, your CAT scan, your MRI, and your EEG can all come back normal. But there are real issues hidden under the surface that emerge over time and with varying degrees of difficulty.

And those issues can look like seizures or mental illness or ADD or OCD or some of the other “alphabet” conditions that are swimming around out there.

Or, worst of all, they can be interpreted as a lack of will, being a “bad seed”, being “sinful”, or old-fashioned “character defects” that have little or nothing to do with character and have everything to do with the brain not behaving as it should.

And it can make you crazy. Personally, I wouldn’t be surprised to learn that mental illness can emerge as a result of the stress and strain of dealing with TBI… with or without knowing it.

Well, I would love to write more… and I really want to. But I’ve got to get ready for work and stop at the bank to close the business bank account I opened back before I realized that I wasn’t nearly as capable as I thought I was, and my MBTI was propelling me forward in life, fueled by anxiety, drive, aggression, and a deep-seated need to prove to myself and the world that I was really doing very well… when in fact, I wasn’t.

I know now that the complicated tasks involved with running a business are well beyond my broken brain. I may be able to get back some of my functionality with some speech/occupational therapy, but that’s a ways off in the futur. Right now, it’s time for me to let go of that unrealistic drive and work with the limitations I have. In a way, it’s a huge relief. There are plenty of other ways I can prove my self-worth to myself and the world that don’t involve adminstrative paperwork and filing quarterly taxes 😉

Note: This was cross-posted at Daily Strength

Prepping for my neuro visit tomorrow

I’ve got another neuro visit tomorrow — this one is finally a substantial one, when I’ll actually be reviewing the results of my MRI and my EEG. It’s been about a month since I got my MRI, and it’s been nearly 3 weeks since my EEG, and the suspense has been really intense at times.

In my more dramatic moments, part of me thinks, “Today is the last ‘normal’ day/week of my life.” And I get all worked up, thinking that these test results might come back with terrible news or some sign of a horrible condition/disease/tumor/whatever that will sideline me permanently — or at least turn my life into one big detour.

I worry that I won’t be fully functional anymore. That I’ll have to invest all this extra time and energy in overcoming a real issue that I’ve blissfully ignored for a long time. That I’ll be officially disabled. That I’ll be “less than human” and have to live a second-rate life as a result of what the pictures of my brain show.

I also worry that they won’t find anything at all… that I’ll turn out to be crazy and people will look at me like I’m just looking for attention… making things up… malingering… defrauding professional service providers.

Worst of all, I think, would be getting inconclusive results that will waylay my energy and keep me pre-occupied trying to track down the root cause of stuff that’s been getting in my way for a long time, but I’ve been able to brush off and minimize until the past year or so.

I’d almost rather get no results than inconclusive ones. But whatever happens, happens. And I’ll just deal with whatever comes up. I always do.

This waiting around for test results is really exhausting. Especially since I never got any medical attention for any of my multiple TBI’s, and I don’t have a lot of reliable medical records describing my symptoms and issues in medical jargon-y detail. I’ve never been able to articulate my issues to doctors with any level of accuracy, and most of the time, I’ve just given up and said, “Oh, forget it — it’s not that bad, really…” and went off to lick my wounds where I was safe and warm and able to tend to myself and my problems on my own terms.

I swear, this cognitive-challenge/communication-difficulty stuff just makes me nuts. I have a hell of a time articulating my issues out loud to doctors, who are all too often looking for medical data and/or some Latin-based vocabulary in order to properly assess my situation. I don’t know Latin, and I don’t have medical records that show evidence of my injuries. All I have is my life experience and a muddled, garbled mish-mash of out-loud observations that don’t come across right, when I’m talking to someone who doesn’t know me personally (and even if they do, can’t for the life of them imagine that I’ve actually been injured). Absent concrete data, I’m out of luck… so, I’ve been largely resigned over the years to just being out of luck.

Oh, well… what’s next? Life is waiting…

But tomorrow, I will actually be having a discussion with a doctor about real, honest-to-goodness medical test results. Imagine that. I am really looking forward to it. I’m looking forward to it so much that I’ve been studying up on MRI’s and EEG’s and learning to recognize what they show.

I found a couple of great sites for learning about them — with plenty of pictures, which I desperately need.

There’s the section on Electroencephalography and Evoked Potentials followed by their Electroencephalography Atlas over at Medline. I have been studying the page on Normal Awake EEG
so I know what I’m looking at, when the doctor shows me what’s going on with me. I’m studying the normal EEG, as well as other types, so I can tell the difference — if there is any — between what my EEG looks like and what a normal one would look like.

Normal Awake EEG - A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

Normal Awake EEG : A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

I’ve also been studying MRI’s over at Harvard’s Whole Brain Atlas, which shows what a normal MRI looks like — with the different slices — so that when I look at my own MRI, I can see if/how it differs from how it “should” look.

The Whole Brain Atlas

They have MRI slices from different scenarios —

  • Normal Brain
  • Cerebrovascular Disease (stroke or “brain attack”)
  • Neoplastic Disease (brain tumor)
  • Degenerative Disease
  • Inflammatory or Infectious Disease

And you can look at the slices from different angles, which is way cool!

I’ve been studying the normal brain MRI slices, so I am better able to understand what — if anything — is wrong with my gourd.

Now, on a wireless or dialup connection, the images load a little slowly, but on broadband/cable modem, they’re speedy.

Okay, so I know I’m a bit of a nerd/geek, but this just fascinates me. I’m also studying EEG electrode placement patterns, so when I look at my own EEG, if there is any abnormal activity, I can see what area of my brain it takes place in.

Electrodes are placed on 10-20 different areas of the scalp, and they’re lettered/numbered by position. F means Frontal Lobe, T means Temporal Lobe, O means Occipital Lobe, P means Parietal Lobe, and combinations of them mean the electrodes are getting data from more than one lobe. The numbers are odd on the left side of the head and are even on the right side. Here’s an image I’ve been studying:

eeg electrode placement - click to enlarge

I think it’s fascinating. And I have a lot to learn. I think I’ll get myself a balloon and blow it up, then write all the electrode numbers on the balloon with a permanent marker, so I have a 3D version of the placement to take with me to the doctor. I’ll let the air out of the balloon, so I can take it with me easily and then blow it up at the doctor’s office so I can see what’s up, when they start talking about the different readings of my brain.

Of course, this may be moot, if my EEG comes back perfectly normal, but in case it doesn’t, I would like to understand where/how/why things are ‘off’ with me… what it means… and if/how any of my prior TBIs have specifically impacted certain parts of my brain.

This stuff just fascinates me. It’s a lot to take in, and it can actually be pretty serious, but for now I’m going to entertain myself… not to mention distract myself from all the different scenarios my broken brain is coming up with.

Sometimes the inside of my head is a scary place to be.

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.

Avoiding insurance fraud…?

I’ve been away for a few days, dealing with life (yes, I actually have one!) while I gear up for more testing. I’ve got an EEG coming up, to get some more actual visuals of what goes on in my brain — glory be! I am so tired of having to explain the breadth and depth of my life experience to professional care-givers, just to catch their attention. I’m hoping machine-generated images will help.

I really really hope something useful comes of this next test. Of all my testing, in fact. Once I have some definitive data in place, then I can put together a more effective approach to dealing with all the various professionals in my life.

Speaking of professionals, I recently had a conversation with a Ph.D. about a list of neurologists and neuropsychologists who are helpful — and not so helpful — in assessing and treating traumatic brain injury. There’s a brain injury support group that keeps track of who’s helpful and who’s not, and they specifically mention neurologists and physiologists who are in league with insurance companies… and make a point of proving that people do not have tbi-related issues that should be covered by insurance.

While checking my blog stats tonight, I found that someone had searched on this combination of words:

tbi and insurance company tests to disqu

I assume that “disqu” is short for “disqualify”  and that the person entering the search term may have been someone who was about to undergo testing of some sort. If I’m right, I really feel for them. It must be terribly confusing and disorienting for them, if they’re “freshly wounded” — and they have to cope with someone trying to prove they don’t have problems for real.

All I can say is, when it comes to dealing with brain injuries, it’s critical to get the right help. Ask around and find people who have in-depth experience with TBI, and find out who’s on the payroll of the insurance companies. Get inside information on who’s in the helping business, who “gets it” when it comes to brain injury, and who’s in the business of lining their pockets thanks to some monster health insurance company.

Back in the day before I started having all those car accidents, I actually studied (and passed the state exam) for selling insurance. Bottom line is, you don’t want them angry at you or suspicious of you. So if you’re going to go asking for help, you’ll need to be able to prove you need it.

I’m fortunate to have a PCP who respects my honest and well-intentioned need for information and gives me the referrals I truly need. I’m fortunate to have blundered across the right people at the right time. And I’m fortunate to be so hard-headed and stubborn that I don’t take no for an answer. Not forever, anyway. I may get stalled, but I seldom get stopped.

I wish/hope I can say the same for others in my same type of situation.

Army sees sharp rise in suicide rate

According to the Los Angeles Times, military officials have reported that this past year (2008), the suicide rate among Army soldiers reached its highest level in thirty years. The news came in a report that pointed to the inadequacy of anti-suicide efforts undertaken in recent years.

From the story:

At least 128 Army soldiers took their own lives last year — an estimated suicide rate of 20.2 per 100,000, a sharp increase from the 2007 rate of 16.8.

Note: That’s a nearly 20% increase in the suicide rate — and it also does not include additional folks below. I’m not sure about the total math/percentage increase (math has never been my strong suit, and I’m short on time), but 143 is more suicide casualties than 128.

It marked the first time the Army rate has exceeded the national suicide rate for the corresponding population group — 19.5 per 100,000 — since the Pentagon began systematically tracking suicides nearly 30 years ago.The 2008 figure does not include 15 additional deaths under investigation that officials suspect were suicides.

Also Thursday, Marine Corps officials revised their suicide numbers upward, reporting a rate of 19.0 per 100,000 in 2008, the highest for the Marines since 1995.

“Why do the numbers keep going up? We cannot tell you,” Army Secretary Pete Geren said.

Army officials believe that contributing factors include emotional and psychological stress caused by repeated combat deployments, along with the toll that the tours have taken on marriages.

Despite official reticence on this, there are a whole lot of people who can add insight into how and why suicide can go hand-in-hand with traumatic brain injury. I found this presentation on Suicide Attempts Following Traumatic Brain Injury that helps shed light on things.

I think that a wide array of issues play into this — the times we live in, when a state of war is pretty much constant (be it on battlefields abroad or at home, where the War On Terror is inescapable), so much intense pressure is placed on military personnel whose service is more needed/desired/required than ever before (and on so many more levels), and there is far less social and cultural support for our walking wounded, once they return home. The fact that soldiers are being deployed out of reserve ranks — not career military — complicates things, too, I believe. Plus, our whole society’s treatment of our soldiers is a recipe for disaster — on the one hand, those who serve are given no choice but to go, often leaving dependent families behind, but the society which requires their unquestioning service insists on preying on those left behind. Banks foreclose on soldiers’ homes. Employers refuse to allow families and loved ones any leeway in seeing these soldiers — I used to work with a woman who quit a job she needed because her employer wouldn’t give her a few days off to spend with her son who was being redeployed to Iraq. And once our service members return, they are all too often NOT given proper care by those charged with their well-being, and they are returned to an ignorant, self-absorbed society which doesn’t understand their injuries, their needs, their unique circumstances — all created in the name of protecting the very ignorant, self-obsessed society that treats them like crap.

And adding insult to injury, the wounds that many of our soldiers sustain are hidden from the rest of the world — TBI & PTSD — or are considered signs of “bad behavior” or “poor discipline”, rather than bona fide injuries with real physical and mental health consequences. So, rather than being able to find help, these folks — and their families, who may or may not know about TBI and how it can and does affect them — are marginalized even more from society, forced to fend for themselves in our “information society” with injuries that A) keep them from participating fully, B) keep them from realizing the extent of their difficulties, and C) keep them from reaching out effectively to get the help they need.

The truly frightening thing — as if all this isn’t horrifying enough — is that their problems will ultimately become all of society’s problems, sooner or later. As though it weren’t bad enough that our men and women in uniform are being severely injured in ways that prevent them from accessing help, but their injuries over the long term can morph and evolve and become far more serious and far more intractable than they might be, if they were able to get help up front. And that has ramifications for their families, their employers, their communities, law enforcement, public services… really, anyone who has anything to do with them if/when they’re having bad days on down the line. And some lobbyist-compromised politician in Washington will propose harsher, longer, more draconian laws and prison terms as a “solution” to all these “bad people” who “can’t control themselves”.

Of course (and I’m being sarcastic now), this is all very well and good for the prison industry, which can hire out inmates to corporations that need cheap labor. In the absence of illegal aliens and people willing to work under the table and cheap offshore personnel, there could eventually be an abundance of prison-based workers whose labor is available for pennies on the dollar, all within the borders of these United States.

Okay, I’ve stopped being sarcastic. For those who are concerned about the possibility of a loved one who’s sustained a TBI and PTSD during deployment, there is a lot of help available out there online that you can access for free. There are lots of websites that talk about TBI, there is a lot of information to read. There are videos on You Tube you can watch. And there are online forums for vets and their families where you can turn for support.

You do not need to suffer alone. There are many, many people — military and otherwise (I’m not military) — who have lots of life experience with TBI and dealing with it constructively. You don’t have to be at the mercy of the VA or officials who aren’t able to be forthcoming with the facts and details about TBI (and PTSD) and how they affect people’s lives. So, reach out. Speak up. Participate and contribute. We cannot change the injuries we’ve sustained, but we need not suffer in isolation. We may not be able to 100% cure our conditions, but in some way or another, we can heal.

God bless.

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.


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