Signs of progress… Yesterday, I was pretty worn out after a long day of work. I was supposed to leave for my vacation in the afternoon, but I had too much to do, so I ended up working through the evening to at least make a dent in what was happening with work.
After that, I got into the beginnings of a very familiar argument with someone over a topic that’s very touchy for me. Things have been tense for over a week, since the Boston Marathon bombing, which injured some friends of friends and had everybody at work talking and stressing… talking and stressing…
No matter where you are, these kinds of events can really take a toll on your mental health, and I was a little worse for wear yesterday — between not getting to leave for vacation on time, having to rush to fix all kinds of stupid sh*t that got screwed up because somebody at work didn’t want to do their job, and feeling pressured by my family to spend time that I don’t have, visiting them… and (had I mentioned?) working like a crazy person all day.
So, when this argument started, I could feel the familiar rush of indignation, getting upset because I “know better” than the person I was getting into an argument with. They were making unwise choices about their health, not taking care of themself, and then getting all tweaked because they have health issues. Uh, d’uh — you eat crap, you don’t exercise, you have no apparent regimen in your daily life, and then you complain about not being able to do things you used to do, and you’re freaked out about illness and getting sick and coming down with diabetes or a heart attack… without ever doing anything about it. I get so frustrated with this individual, whose behavior seems to have no connection with what they actually want to have happen in their life. It’s maddening.
And of course, I know better.
I started to get really tweaked over it, getting angrier and angrier with them over what they were doing and saying and how they were acting. Then it occurred to me — I’ve had this exact same argument with this person for years and years, and it never gets resolved. We just get pissed off at each other, go our separate ways for a bit to cool off, then get back in touch as though the whole thing never happened. There’s never any resolution, because they think they’re doing things right, making choices that make them feel good in the moment but which have been shown by tons of medical evidence, to do them harm in the long run. All they know is “the now” and all they really strive for in their personal life is to be “present in the moment”.
Yes, it sounds insane to me — trading your future for the sake of the now — but that is their perspective, and in all the decades that I’ve known them (they’re one of my longest friends), they have never felt or acted or believed any other way. And the times when they did have little health scares, they were back to their old ways, as though they’d never had the scares.
But as I sat listening to them, I could feel myself getting more and more tense, feeling myself really stressing over it… while they just carried on talking about things as happy as a clam. And when I said something about being concerned for them, they snapped at me… and I could feel that old argument coming on again. I noticed that in my own body, my head was starting to feel tight and pressurized. And my heart was starting to pound. I was starting to sweat, and my thoughts were starting to repeat over and over the same arguments and concerns I’ve had for years — like they were a dog chasing its own tail. I was getting really uptight, really stressed, and I was on the verge of flipping out at them — as I have often done in the past.
But I stopped. I stopped the downward spiral, I stopped the dog chasing its tail. I knew I was tired from a long day of working. I knew I was upset about not being able to leave on time for my vacation. I knew my patience had been running thin since about 10:00 that morning. I knew that where I was going was NOT a good place to be.
I also remembered what I’ve heard and read in a number of places — the average emotion lasts about 90 seconds. Its biochemical “recipe” gets into our blood — and then can get flushed out in less than two minutes. If left to its own devices without any kind of intervention on my part, it will dissipate and disappear. I don’t have to do anything, if I don’t much care for the experience — just breathe and let it go its own way. On the other hand, I can choose to feel something different and let that get into my system for a longer period of time.
So, if I’ve got 90 seconds to work with, that gives me a choice — I can either dive into whatever I’m feeling and get all worked up and bent out of shape, like I have countless times. Or I can distract myself (I’m very good at that), breathe, let my system chill out, and NOT have the same shouting match that has been the buggaboo of this friendship since almost the beginning.
So, last night I chose the latter. I distracted myself. I just sat there quietly while they talked, and I didn’t get into it. I was upset at first, but after a little while that feeling dissipated and I started to feel sane again. The dog stopped chasing its tail. The tension and pressure in my head relaxed. And even though I was still irked by what they were saying and doing in their day-to-day, that feeling didn’t “own” me the same way it usually does. I was able to tell them what I felt and how I was feeling, in a sane person’s gone of voice… and then let it go. I didn’t get into the blame, the fear, the anxiety, the frustration. I “went there” for a little bit, last night. But then I let it go and did something else with my attention. I stopped the flash flood of emotions before it got started.
And you know what? When I didn’t fly off the handle and yell and criticize and attack, the person on the other side of the discussion could actually hear what I was saying. They could actually get that I was concerned about their health, that I was worried about how much money they were spending on junk food, and that my frustration and anger came out of concern for their health. It wasn’t about me trying to shame them. It was about me caring about their well-being and wanting to see them have a better life and do better with themself.
And it helped. Last night could have kicked off a really shitty vacation for me, starting me off on a foot that started with a blow-out, me not being able to sleep from being so friggin’ tired, having my chemistry out of whack, and having yet another instance of an impossible argument that never gets resolved.
I can’t say I’m that encouraged by my friend’s choices. And I can’t say I’m that optimistic about their long-term health and happiness. But for me, at least I didn’t drown in a flood of emotion that just swamps me and makes me feel really, really terrible. When I get that upset and blow up, the biochemical residue stays with me for days and drags me down, making me depressed and wiping out my self-confidence.
Today I don’t have that problem. And my friend doesn’t have to go through their day with the memory of yet another one of my blow-ups. Today I get to start fresh. Everybody does.
Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.
I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.
I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.
The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? 😉 But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.
Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.
Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.
We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.
The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears. But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.
Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.
It took several years to get them back on track, but we did it. And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.
The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.
So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.
They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.
It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.”
And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.
Fear that there is something terribly wrong with them.
Fear that they are damaged beyond repair.
Fear that others will hate and look down on them because of the strokes.
Fear that they will never be “normal” again.
Fear that they’re going to die a horrible death and go to hell forever.
Fear that it is all TOO MUCHto handle.
So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.
There’s the lying.
I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.
I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.
It’s getting really bad. On a number of levels.
First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.
And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.
And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them andtheir spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.
Right. Emotional support. Unfortunately, I know differently.
This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.
Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.
And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.
It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.
But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… andtheir blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!
So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGERbecause they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.
When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.
At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.
But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.
None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.
I’ve been watching the video of Malcolm Gladwell that I found on The Concussion Blog a few days ago. I had some time to watch the second half (I started the first half a few days back), and it is good — well worth the hour it takes to watch.
As a point of entertainment — and also a telling view into the landscape at U of Penn, which continues its football program, even after the inexplicable suicide of one of their football players who had no history of depression, but did have CTE, as evidenced in a biopsy of his brain after death — at 43:00 watch the academic try to figure out what to do at the end of Gladwell’s talk. At first he walks up to the podium and sort of stands there. Then at 43:12, he looks around and realizes he’d better start clapping with his peers (who are standing up to clap), while also stepping away from Gladwell, and not making eye contact. My vivid imagination tells me he’s clearly worried about the flak he’s going to take with his administration for having invited this upstart (from NYU, no less) who is publicly taking the university to task for their negligence in addressing football-related injuries, including CTE. Who knows, maybe he’s seeing his whole career flash before his eyes…? He looks around a little bit, as though seeking some sort of direction from someone in the audience, then stops clapping and steps up to take control of the podium.
But also a telling look into the sorts of behaviors that perpetuate the prevalence of football in this country. Granted, I grew up loving football and playing it when I could (though I was more interested in track and cross country than football as a team sport). And up until I realized that my significant life/money/relationship issues I was dealing with were related to the concussion I sustained 8 years ago, I loved watching players run into each other and rough each other up on a regular basis.
I just loved it.
Just like I loved playing it when I was a kid, and I played rough when I did. For the record, I also played rough in lacrosse and soccer, when I participated in them, and I had no qualms about making physical contact, even in sports where that wasn’t supposed to happen. I admit it. I was a bruiser. And it turns out, I bruised myself, too.
What strikes me about the Gladwell talk is how he describes Owen Thomas, the Penn player who hung himself after “a sudden and uncharacteristic emotional collapse (at 39:16)” was never diagnosed with a concussion, and was “the kind of player who might have ignored the symptoms to stay on the field” (at 39:40 of the video). Who knows – maybe it cost him his life, to ignore the symptoms he should have paid attention to. Maybe it contributed to his CTE. The evidence isn’t as clear as people demand, but it’s still a pretty compelling correlation. Somebody who obviously sustained a ton of hits (sub-concussive or more serious — to the tune of about 1,000 each season), kept quiet about any pain or discomfort he might have experienced… and he never lived long enough to tell the truth about what more he may have been experiencing. That knowledge went to the grave with him.
But still there’s the CTE.
This statement, quoted from the New York Times, haunts me. Because on so many levels, that same kind of behavior is well evident in me. I don’t like to complain. I don’t like to draw attention to my aches and pains and difficulties. I don’t like to make much of my discomforts, which are myriad and seem to never end. That’s just how my life is. That’s just how things are. It’s all background noise to the rest of my life, and while I do try at times to mitigate the issues and head them off at the pass, after a certain point, I just quit trying to fix them and try to focus on other things which are more productive (and more interesting) to me.
I’m not the kind of person who loves to dwell on their misfortune. I’d rather do something about it. And if I can’t do something to stop it, then I just accept it, do my best to ignore it, and move on.
But what if that’s part of the problem? I know that when I fell in 2004 and smashed my head on those stairs – bam! bam! bam! bam! – the last thing I wanted to do, was draw attention to my injury. I knew, deep down inside, that I was hurt. But I also didn’t know how to describe it, I didn’t know how to communicate it to others, I didn’t know how to put what I was feeling and sensing into words, and I didn’t know if I should even be worried.
I just sat down for a little bit to recover, gathered my wits about me, then picked myself up and got on with my work. Like I’ve done countless other times while playing sports, after car accidents, after multiple falls (one off the back of a truck I was packing — I stepped back and misjudged the height and fell back (I didn’t hit my head, but I was definitely jarred and out of it for a little bit), after clunking my head on something or other. Just sit down for a little bit, wait till I can see/hear/thinking again, and then get up and get moving again — often at a more brisk pace than I’d been working at before.
The mechanics of this fascinate me. No way have I sustained as many impacts as long-term football players, but I have had my share of rough-ups, and each time I was knocked for a loop, I stopped, composed myself, then went on without mentioning the incidents or how I was feeling afterwards to anyone.
To anyone. Not my parents, not my coaches, not my teammates, not my spouse, not my coworkers. Nobody.
Because who would understand? Who would get it? They’d all thing I was wrong in the head and get worried, and then I’d have to navigate their worry and concern, which was even more disorienting and frustrating and confusing than the injury itself. And there was a very good chance they’d take me out of the “game”, be it life or a sports contest, when all I wanted was to be in the midst of it, playing my part.
I figured I was better off just dealing with it myself.
So, I kept it quiet. Until I couldn’t anymore.
Of course, it catches up with you. It always does. You think you can just keep pushing, keep going, keep moving, and nothing bad will happen. You think something bad will happen if you don’t keep up your pace. And to some extent, it’s true. You can get benched. You can get marginalized. You can get sidelined in a thousand different ways, perceived as “unreliable” by those who depend on you for Important Things. And then you’re not worth quite as much to the team as you were before. And you become expendable. And you can get cut. Fired. Disposed of. Because you’re damaged goods who just can’t keep up.
Retard. (sorry for the “r” word, it’s for illustrative purposes — it’s what people may say/think about you)
And today, I find myself in similar straits. I am exhausted from my business trip, and I haven’t gotten my strength back. I haven’t been sleeping, and work has been chaotic and stressful with so much going on. It’s good to be back in my own bed again and back to my regular routine, but I am wiped. Beat. And I still need to keep going. I have to catch up with a lot of things that have been waiting for me. I have to do my chores, take care of business, keep the joint running — and then some, as I make up for lost time.
I don’t feel like I can afford to take time off, to recover, to relax. There is simply too much to do. And so I put my head down, push forward, keep myself going with adrenaline and resolve and steely willpower… and I am rewarded. I am rewarded by those who depend on me, who look at me and think, “Wow – they are unstoppable.” I am respected by those who look up to this sort of self-sacrifice, who admire this sort of lack of self-regard. And I get to keep my coveted position as a team member of a group that relies on me putting everything ahead of myself — and who know nothing of my daily sensory, neurological, and metabolic issues.
Yeah, I keep going. While I can. And then I crash. When I can. I try to get some extra sleep. I try to take time out. I try to catch up with myself as best I know how… but there’s always that element of self-disregard that comes into play, that willingness — eagerness — to ignore the less than attractive aspects of my life, so I can keep up my resolve and productivity.
In the face of this, the best I can do is be honest with myself and recognize when I’m upping my risk of injury. I can pause for a moment and check in about my state of mind and body, and see if I’m tense and uptight… then take a slow, measured breath and just relax and let the tension go.
This is something I’m working on each day, to improve — just being clued in to my state of mind and body, so I don’t get too intensely stressed and start acting out and losing impulse control (like I did yesterday in conversation with my team and a former co-worker, when I said some things about my current employer in the heat of emotion that I never should have said out loud). It’s the kind of awareness I need to strengthen and hone, because the alternative is not that attractive. And the nice thing, too, is that this practice of just checking in, now and then, to see “where I’m at” really does help me relax and feel more together, which is a great feeling to have when I’m in the midst of a sh*tstorm.
So, while I realize that I push the envelope and I tend to overextend myself, each and every day, I also have some tools I can use to mitigate the effects of that constant stress — I have an understanding of how my central nervous system works, that really helps me develop good strategies for coping. I have things I can practice in the course of the day to check in with myself and see if I’m starting to fray. I have an understanding of what constantly high levels of stress can — and will — do to your body and your brain. And I have the internet to read and study and develop my knowledge further, so I can keep myself on track with more strategies and tools based on recent research.
I need to stay in the game. I have to stay in the game. I can’t just sit out and not participate. I have too much riding on me, and I have too much to lose. So, I have to keep myself going… =I know it’s not good to ignore symptoms and stay on the field despite serious injury, but I also can’t let my injury stop me from living my life. So, I do my best to not ignore what’s going on with me — and with the knowledge I have, manage my issues and not let them stop me. It’s an ongoing process, learning to pace myself, and I’m discovering and developing new ways to do that so that can keep moving and keep engaged, not bail from the situation.
Stepping away for a moment to do something different, then coming back fresh.
Pausing a moment to see how I’m breathing, and take a relaxing breath if I need it.
Stopping the momentum for just a moment, so I can catch up with things and not lose myself in that momentum.
Really focusing on developing resilience and hardiness, and accepting challenges as a part of my everyday that are evidence of my strength, not my weakness.
These are all things I can do. These are all things I try to do on a daily basis.
Because I don’t just want to live. I want to live well.
I know that something is wrong the moment the hotel phone beside me rings. It’s 6.30am in Las Vegas and no one calls at this time. “Bev, mate, it’s Bernie,” says a familiar voice. And I know. I just know. “There’s been a crash.” His voice wavers and cracks. “You’ve got to go to Phoenix.”
Found a new blog today — Life After the Game, a blog by a former soccer player but had her career cut short by concussions.
It’s good to see and hear new voices showing up. Post-concussion syndrome is no joke, and it can be a real torture at times. It can completely take over your life and turn you into someone you (and your loved ones) don’t even recognize. It can take from you the very things that mean the world to you – including the game you loved with all your heart.
In the end, of course, it is just a game. But what about the love and purpose and comraderie that you feel when you’re playing? How do you replace that? Especially if you’re struggling, day in and day out, with symptoms and difficulties?
That’s where I think a lot of concussion management comes up short, in my very humble opinion. It’s vital to keep the game in perspective and to not make your entire life dependent on it. But “the game” is more than just a game – it’s community. It’s tribe. It’s family. It’s being part of something bigger than yourself and working towards a common goal. And in this fractious life where it can be so hard to find people who are willing to put aside their own petty, selfish desires for a common cause (or the cause is sponsored by powers who have ulterior motives for rallying people together), having sport to unite you with teammates and supporters can be a lifeline for people who really thrive in that kind of environment.
This all says more to me about our world in general and our present-day society, than it does about sport. It tells me that people still crave belonging. They still hunger for a connection and thirst for success. There’s still a fire in us that burns bright and hot and fierce, under the right conditions.
The challenge — after the game, or when the path back to your old life is cut off from you because of injury and difficulty and, well, life — is to find those things that spark you and get you fired up, and to keep that fire going, to fan the flames… to create those kinds of experiences of teamwork and dedication to a common cause in other areas of your life.
But how? How? The old institutions of church and politics don’t seem to cut it for many. And our workplaces, which used to be where we could find our place and have some structure and meaning to our lives have been gutted by global greed and upper-management excuses about needing to shuffle people around constantly because of “business conditions”. The old structures and frameworks that used to work for us and provide us with a sense of who we were in the world… they’re not as reliable as they once were. What’s more, finding people who are willing to toe the line for the sake of church or political party or the company, is getting harder and harder, as our leaders disappoint us again and again, and it turns out that the people who were supposed to be setting a high moral bar, were actually allowing their subordinates to molest countless young children for decades.
In a world where there is so much moral ambiguity and it’s harder and harder to find a sense of belonging in the world, sport offers us just that — a chance to join with a team of like-minded others and pull together towards a common goal: the win. It’s a chance for us to prove ourselves in a field where there are clear rules and regulations, and we know what constitutes a “win”. In life, things are rarely so clear-cut. But in sports, we can know. We have a scoreboard. And even if the refs screw up, everyone knows they did. And the instant-replay shows it plain as day.
This, I think, is the great loss we suffer, when we can no longer play our chosen game, thanks to TBI / concussion. We lose our connection with clear-cut simplicity, as well as a community of others who agree with us on the Big Questions, who practice and fight and win alongside us, who share our interests and (often) have our best interests at heart, as members of the same team. We lose our sense of belonging, our sense of purpose. We’re cut loose —
— and when we are, we often lose not only our purpose and focus, but also our peeps. We lose our community, our sense of belonging, and we don’t know how to regain it. Especially with TBI, we can become so locked into certain ways of thinking and doing, that we have a hard time learning new ways of thinking and being. What’s more, our friends and families often aren’t resilient enough (or imaginative enough) to imagine us any other way, and help us get to where we’re going next. In fact, we can sometimes be punished by those who think they are trying to help us. We’re fragile, we human beings. And we become even more brittle when the ones we love have been hurt and are no longer there for us in the same way they used to be.
TBI recovery can be a lonely, isolating process. And considering how common it is, there are surprisingly few resources for people who are serious about their recovery. In fact, there are even people in the TBI line of work who say that “true recovery is impossible” — as though the way you were before you got hurt, is the only way you’d ever be, and you’d never would have changed or become a different person if it weren’t for your traumatic brain injury.
I don’t have a lot of kind things to say about folks like that, so I won’t say anything. I will say this — my experience has been different. My life has totally changed — for the better — since I started down this road of deliberate recovery from recurring mild traumatic brain injury — nine+ concussions — and the chronic post-concussion symptoms that have dogged me for as long as I can remember.
If others want to give up, that’s their choice. But I choose something different, and I have had a very different experience than this “no recovery” business. Maybe it’s because my injuries have been “mild” – though I’m not sure what’s so mild about the violently raging maniac and job-hopping wild money-spender I used to be, or the teetering on the brink of total ruin that used to be the story of my life. Or maybe it’s because I have made up my mind to deal with the debilitating noise and light sensitivities, work through the chronic pain, find strategies to offset my really sh*tty short-term memory, and constantly practice to strengthen my ability to focus and keep my act together in the face of challenge and upheaval.
Five years ago, I was in seriously deep sh*t. I was on the verge of losing it ALL.
But that didn’t happen. And it doesn’t have to happen to each and every person who gets brain injured — mild or otherwise. I’m sorry – I just don’t think TBI is a death sentence for the things that mean the most to me in my life. No way. No how. Uh-uh.
Life after the game can bring a ton of adjustments, few of them easy. Actually, none of them are easy. If they were easy, we would have done them a long time ago, with no TBI to prompt us to change. But they can be done. Then can be worked with and adjusted to. They don’t have to be terrible turns of events, but they can offer us a new path, a new way of moving in a completely different direction, where we discover more about ourselves than we ever thought possible.
And when we find that balance inside ourselves… when we realize that the changes we’re going through are more than just handling TBI and PCS, but are really just part of being alive, being human… we can start to reach out to others, see how they are also struggling with the same kinds of challenges we have… and we can start to build our own community, our new team, our new sets of rules that are in agreement with our innermost compass.
We can get a new team in place. And we can define a new game for ourselves. We can start to find the togetherness we seek and the common causes that unite us with others.
But first, we have to be willing to let go. We have to be willing to step away from the familiar, when it is no longer working for us. As hard as it is, as tough as it can be, as heart-breaking as it will be, at some point we need to choose — will I keep looking back (and only back), or will I look forward with the past as a point of reference?
It’s our choice, really. And in the end, sometimes we find that that game never actually ended. It just changed a bit. And there is no “after”. There is only “during this part of”.
August is nearly over. Back to School season is well underway. Kids have gone off to college for the first time, leaving plenty of parents wondering where all the years went. It’s becoming cooler, and the light is changing. Fall is right around the corner.
Here are the Top 27 searches people entered to get to this blog today, along with my responses.
loneliness – Yeah, you and me both. I’ve been feeling really lonely, lately, partly because my work situation is so stressful and amped-up, and partly because I just don’t have that much interaction with people. Most of the time, I get depressed, when I see how people behave. It’s just not right. The political scene makes me nauseous. All the social debates and terrible things people do to each other — it’s so unnecessary and so pointless and it doesn’t achieve anything lasting that really helps. Everybody has pain, but not all of us inflict it on others. And those of us who are determined to not inflict pain on others for our own personal gain, tend to be fewer and farther between than I’d like. It’s lonely out there. But sometimes we manage to find people who can relate to us — and then it’s a little less lonely. That helps.
solution for extreme light sensitivity – The only solution I’ve been able to find, other than sunglasses, is rest. And lots of it. When I am tired, I can become very sensitive to light. When I am stressed by having to process too much information around me, I can’t tolerate light. Resting and relaxing help.
can being overtired cause you to feel dumb – Yes. Especially with TBI. And it’s not just feeling dumb. It’s being dumb — for myself, that is. I can’t speak for anyone else. When I am overtired, I can become a friggin’ idiot. Impulse control goes out the window, along with complex thought. It’s not pretty. I get Dumb and Dumber.
what makes tbi a mental condition – Well, it happens in your brain, so that’s mental. And it affects your mind, as well — the mind and the brain are two different things. The brain is an organ, the mind is the whole system (including your cardio-pulmonary “brain” and your enteric nervous system “brain”) managing the flow of energy and information throughout your whole body and your whole life. I personally believe that TBI contributes to mental illness the same way that other traumas do — it kicks your fight-flight system into high gear and it can keep it there indefinitely, if you’re not aware of what’s going on or if you haven’t found a way to get out of that adrenaline loop. TBI can seriously mess with your biochemistry and set you up for depression, impulse-control issues, behavioral issues, and a whole lot of other problems that come from having a nervous system that’s totally whacked out. You may start out with a relatively “mild” injury, but if important aspects of your life are disrupted in ways that put you on constant guard and alert, eventually it will take a toll. Unless you can do something about that and figure out how to adjust and adapt, you can find yourself worse off, after a few years, than you were at the start. It happened to me, and it happens to a lot of people.
impact brain test – I am not a huge fan of computer testing for concussion and pre-concussion baselines, mainly because people tend to use machines as crutches and often don’t put in the work they need to do, to understand and respond appropriately. If someone gets an Impact testing package, does that mean they don’t have to understand concussion/TBI, and they can just rely on the machine? Of course not. But not all people think that way, so ultimately it might do more harm than good. Education about concussion and the best way to handle it — by an independent person who has been properly trained and doesn’t have a vested interest in overlooking injury for the sake of “winning” — is really the best way to go.
how well did my job interview go – Good question. That’s always a hard one for me. I usually find out later, but it’s notoriously difficult for me to tell, right after it happened.
i forget where i am – I forgot where I was, about a week ago. I was driving through some woods not far from my home, in a section where I’m usually paying close attention to traffic and don’t look around much. I looked around me, and I did not recognize anything. I couldn’t even remember where I was going, for a few seconds. It probably lasted about 5-10 seconds, then I turned a corner and I recognized where I was. It was a little eerie, and it kind of freaked me out, but it happens.
live by choice, not by chance. make changes, not excuse. be motivated, not manipulated. work to excel, not compete. listen to your inner voice, not the jumbled opinions of everyone else – Yes, what they said.
pain is weakness leaving the body quote – see above
univ of buffalo brain injury treatment – These folks have a protocol that helps people recover from concussion — even people with long-standing persistent issues. They also have a great success rate (last I checked). I have a bunch of things I’ve written about them here.
ways to slow down your heart rate – Again, see above
off work following a concussion – Probably smart. I never stopped working after my concussion(s), and it got me in trouble. It blinded me to the problems I was having, because I was so busy pushing and pushing and pushing, that I didn’t stop to look at what was going on with me. Only when I took time off to help a family member who was seriously ill, did I realize that my thinking was messed up, my noise and light sensitivities were intense, and I was in constant stress for reasons I didn’t understand. Taking time off work is so important. I hope the person who searched on this is making the most of it.
tbi and anger – They tend to go hand-in-hand. Either someone was an angry person before, and their TBI has made things worse, or they underwent some personality changes because the way their brain worked before isn’t the same as it is now, and they get stressed, agitated, and they’re not able to regulate their emotions a well as before. Rage tends to accompany TBI, too. It’s a problem — and it’s probably responsible for a lot of people going to jail. Dealing with TBI-induced anger is critical — both for the survivor and the people around them.
contagious trauma in managing change – It happens. It’s not easy to watch people go through things, and you can end up going through things, as well. Also, when you’re dealing with someone who has wild mood swings and outbursts and may be edgy, you can develop trauma having to deal with them every day. Being threatened by someone else is not easy, even if they have good reason to be on edge. But trauma is the “gift that keeps on giving” and it sometimes is contagious.
i got a concussion now i cant feel emotions – This is understandable. Here’s how I think this works (based on my own experience, not on any research I’ve read). When you get a concussion, your whole system may need to work harder just to do the same things as before. Because it has to work harder, you depend more on stress hormones and adrenaline to keep going. Especially if the symptoms are confusing, disruptive, unwelcome, and uncontrollable, you can find yourself always on edge and always on guard. When that happens, your biochemistry shuts down the parts of you that are “unnecessary” — the emotions, the feelings, the more receptive parts of you. Your system is so busy trying to keep up, that it loses touch with the feeling parts of itself. After a while, you can get out of practice and end up feeling like a block of wood. That happened to me. I lost all the emotional stuff (aside from anger and rage and sadness and frustration), and I felt like a block of wood walking around. I’m starting to feel like that again, with my current job situation, so I know it’s time to go.
you know you’re tired when this happens – Yes, you sure do.
do you use your vagus nerve to sing? – I think the vagus nerve is affected (in a good way) by singing, but I’m not sure it helps you sing.
head ramming concussion symptoms – You can get a TBI/concussion from head-banging. The symptoms will vary from person to person, but if someone is behaving differently (and seeming more stupid) than before, and they’ve been ramming their head against something, could be they have a concussion. And they should take care of themself so they can start behaving like a regular person again, as well as get smart again. These things can heal with time – but it takes time.
mild tbi two years later – Is not uncommon. Some of us end up having symptoms for a while. It’s not uncommon. It has been said that about 85% of concussed folks recover fully without further problems, but that means 15% don’t. I’m one of the 15%. And in fact (thanks markinidaho for the nudge), when you get down to it, concussion effects are permanent. Even if you don’t have intense issues, you can still be more sensitive to caffeine and alcohol and drugs, and you’re always going to be more susceptible to another concussion. I’m still dealing with TBI stuff, more than 7 years after my last concussion (nearly 8 – coming up this Thanksgiving). That one came after more than 8 prior concussions, which started when I was a young kid. When the brain changes, it changes. And working with it to change it in a different direction has been an ongoing process with me. It just doesn’t end.
brain injury complacency – Is also not uncommon. People tend to shrug it off, because people have been getting hit in the head for thousands of years, and most people have gotten a kick out of how funny it is to watch someone stagger around like they’re drunk, or lie there knocked out before they open their eyes and jump up again. We’re learning better now, but there’s still a lot of complacency — especially with regard to men. Getting hit on the head, hitting others on the head, punching people, getting punched, getting knocked down and getting back up to go back in the fray is all part of the stereotypical American male growing-up experience, and a lot of folks think it’s just how you toughen ’em up. The same is somewhat true for women, but not nearly as much. Still, that idea that you have to be “tough” and that you can just dismiss a brain injury and go back to what you were doing before, is common. And people think that things will just take care of themselves, or that we can “design” a new life on purpose, if we just try/think hard enough.
how can i slow my heart rate down during exercise – See above. And try taking slower breaths. It could be that you’re breathing too fast — hyperventilating.
warning sign photos – Shouldn’t be too hard to find here. I use them now and then.
I am writing this after several conversations and some reading — one conversation with a former soldier who was in Iraq during the first Gulf War, several conversations with a friend of mine who sustained a brain injury about three years ago, but has never gotten help for their injury — and is making increasingly poor choices about their life, their relationships, etc… all the while saying they need to find a therapist to help them deal with childhood trauma. They need a neuropsychologist, more like… As for the reading, check this out: Two Must Reads: The struggle for comprehensive PTSD and TBI treatment. I skimmed through it quickly, but I’ll have to go back to it. And I recommend you check it out, as well.
In thinking about the conversation I had with the ex-Marine, what struck me is how he talked about dealing with the incredible challenge of having to do things that were against his own morality, like kill people and destroy things. I was reminded of my post a while back about how war damages the souls of soldiers when I was talking to him, and he said there were several things that he and other military members of his family have done to cope.
The first is talk to somebody who understands — veterans in the family with whom he and other soldiers in his family can talk, have been so critical. The other is to find a way to make peace with things. Find a way to make it okay, on some level, that this is happening. Through faith. Or some sort of belief system.
In thinking about the conversations with my BI friend, I am starting to take notice that all their talk about trauma and dealing with it, is set against a backdrop of the BI they sustained five years ago. We have mutual friends who are therapists who are convinced that a lot of people are walking around with suppressed memories of terrible abuse in their childhoods, and that those repressed memories are making them do the things they do. With my BI friend, I suspect that they have been getting the “party line” that they are dealing with old memories coming up, and they don’t know how to emotionally deal with them. Now, I know for a fact that this friend didn’t just sustain a BI three years ago… Back around 1999, they also slipped on some ice, fell and hit their head pretty badly. They were dizzy and disoriented after it, and I noticed them being more volatile afterwards. Then they seemed to get better (although their marriage has been a bit rocky over the years). In the past three years, they’ve made an amazing recovery, and if you didn’t know them before, you probably would never guess that they have this going on with them. But I can tell. Maybe because I’m more sensitive to it — and better educated.
Anyway, this friend of mine is in pretty bad shape, financially, yet they don’t quite seem to get it. They have serious impulse control issues with money, and their spouse doesn’t actively monitor what they are spending on, how much, and how often. So, they have ended up in a jam that might cost them their car or their house. But they keep going along just doing what they do. Whenever I suggest that they might want to take a look at their spending, they get defensive, aggressive, combative. Not pretty. They just blow up like crazy. So, I stopped talking to them about it. They think they’ve found a good therapist, but like the others they have gone to in the past, they may end up not mentioning the BIs, and they may start treating their symptoms as purely psychological or emotional ones.
I really need to say something more to them about this. I think I need to discuss it with my neuropsych. My NP is probably not going to be able to say much, but I do need to ask them if they know anyone like them who has the same orientation towards healing and recovery. I suspect that along with my friend’s childhood trauma, there are some neuropsychological issues that need to be addressed — and it could be that by simply changing a few of the ways they go about doing things, they could benefit immensely.
I just need to find a good way to bring up the subject. They know about my recovery, and they have said many times that they are amazed by how far I’ve come. And, come to think of it, they have also said they wished they could find someone who is like my NP for themself. The thing they have going for them, is they have documented medical evidence of their most recent brain injury. It’s all there, complete with MRI showing the places where they have lesions. So they could get medical coverage to help them defray the costs. That’s huge, considering they have almost no money. Maybe getting some help will help them change that.
So yes, I do need to bring up the possibility of them seeing a neuropsychologist. They can get pretty paranoid, so I need to be careful how I phrase things. But I at least need to try. They need help. And I might be able to help/support them.
One of the things I hear them say is that they’re “too old”. They’re in their 60s and they feel like they’re getting old. But I really believe that they can turn things around. With some basic logistical changes similar to what I’ve done, I suspect they can revitalize their life and not only add years to their life, but add life to their years.
I just hope they don’t end up with a therapist who stirs everything up, tries to get them to “feel their feelings” (trust me, they have no problem doing that), and disregards their TBI history, because they are convinced that all their problems are trauma related. They might only be partly right — trauma includes traumatic brain injury, and I would hate to see that piece of their puzzle ignored.
Had a great trip down to see family, this past weekend. Truth to tell, I was a bit apprehensive about it all – there was a LOT of driving involved, and multiple family units, some of whom I have not seen in decades (not all of them friendly, the last time we spoke)… all on top of a seemingly unsustainable lack of sleep. Between the driving and visiting and events, there was simply no way I could have gotten 8 hours each night.
And sure enough, I didn’t.
But it all turned out alright, in part because I was prepared for it. I knew I was going to be tired. I knew I was going to be “behind” on my sleep. And I monitored my behavior pretty closely for the duration, to make sure I didn’t get ahead of myself and start down a road that would mess up my whole trip.
Only twice did I get out of hand – once when my siblings kids were disobeying their parents and doing something that was potentially dangerous, and my siblings were not pro-active at all and didn’t get them in line for their own safety. I spoke up sharply, and I think I scared the kids. But it kept them out of danger. And my siblings got a little miffed that I said anything to the kids. That kind of threw me a little bit, because in years past we’ve had a lot of confrontations where I acted out and was pretty aggressive with people around me, and they all remember that — all too well.
So there was the old “vibe” about “BB is up to their old tricks again – they just can’t be trusted in polite company – just a bad seed” that I had to work so hard to overcome in my mind over the years. It threw me for a couple of hours that morning, but then I went to lie down for a nap, had a little rest, and then I got up feeling a little better. But when I joined everyone else, I was still out of sorts, and I had an argument with my spouse that got very tense. They were also on edge, because my family can be very demanding and judgmental and pretty rough on everyone, and my spouse has never been comfortable with that level of harshness in family settings. They think that family should unconditionally support one another, while my family thinks that it’s the family’s duty to find fault with and correct each others’ “flaws”.
So, we had a bit of a squabble that day. We weren’t the only ones, though. My siblings were all having trouble with their spouses, and at various points, they were all split off in different rooms, having “talks” to sort things out.
But at least we did.
So, things actually went okay, for the duration of the trip. And I had some good conversations with family members.
One thing I noticed, however, is that my “flashpoint” is higher than it used to be, but it’s more powerful. The things that used to always set me off with my family didn’t affect me as much as they used to, but when they did hit, my reaction to them was much stronger than in the past. In the past, the discomfort and issues would simmer in the background and be like this sub-text of my experience. Now, however, they just bubble right up to the top and explode. Not as extremely as they used to, when I was a kid, but still…
Just ask my spouse. It’s a wonder I didn’t threaten divorce in the course of our conversation. I thought about it. Seriously. And I was prepared to go through with it. But when I gave myself some time to simmer down and chill out, I saw how ridiculous I was being. I wish I could say I had a good laugh about it, but it bothered me. I knew I was being stupid and ridiculous, but it wasn’t amusing to me. It was bothersome.
So, in the after-hours since getting home late-late-late last night, I’m looking back at the weekend, choosing how I will think about it. I could choose to focus on those two stages of a near-meltdown and think the whole time was ruined by them. Or I could focus on all the really great times I had with people I haven’t seen in years, who genuinely care about me and were very loving and engaging, despite my troubled past.
I feel in a lot of ways, as though my life with my extended family has “resumed”. For many years, I kept my distance from them because I had so many troubles communicating with them, and I felt like I was always getting turned around — and that really upset me. People in my family “knew I had problems” but they didn’t understand why that was, and they often didn’t treat me well. So, I kept my distance. Or when I was with them, I didn’t come out of my shell very well.
I was literally a captive of my perceptions of myself. I felt like I was too “problematic” for them, and they probably picked up on that and treated me accordingly. I sort of have this reputation in my family as being a bit of a loser — plenty of potential, but somehow lacking the moral fortitude to do anything with it. That reputation has dragged me down so very much, and in the past, I didn’t have much hope of interacting well with them, so I never gave myself a chance to just be who I was with them.
That has changed dramatically, however, in the past several years. Working with my neuropsych, they’ve just about convinced me that I’m not profoundly, mortally flawed and an intermittent danger to myself and others. I’ve been learning to give myself a chance around people, engaging with them, striking up conversations and interacting in healthy, productive ways. And I’ve been really gingerly resuming contact with people who I’d steered clear of in the past.
Now, it hasn’t been easy going. It’s been touch and go, and I’ve actually backed off on a lot of social interactions that I once had. I’ve stepped away from a lot of old friendships and acquaintances, to keep myself sane and centered. But sometimes I’ve distanced myself from people just out of laziness. And a desire to withdraw, isolate, and do my own thing without having to work with others. That has not been the biggest improvement in my life.
And yet, it serves its purpose. When it comes time to interact with people, I’m far less depleted. I am aware of my challenges, and I take proactive steps to deal with them. Being aware helps. So long as it doesn’t hold me back. Fortunately, this past weekend, it didn’t hold me back very much, aside from a few blips in the road.
I would like to get to a point where I can freely interact with people, connect, and just have a conversation… eventually building up friendships. I’m not quite there, yet. I think this is one way I’ve slid back over the past few years, while I’ve advanced in other ways. I think I’ll get there, eventually. Maybe sooner than later. But I’m not quite there yet. Sometimes I get down on myself, thinking I should be farther along. These things take time, though. It will come.
I guess this is just how it is… Steps forward, steps back. TBI is never easy, and it has its share of surprises. I’ll count my blessings that I had such a good weekend and such a good time with my relatives. Right now, that’s what counts.
Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve been working with, thus far. These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.
Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain
Physical – Sleep
58. Waking up too early
59. Being fatigued / tired
60. Difficulty falling asleep
61. Waking up during the night
62. Sleeping too much
Physical – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters, or blind spots
Physical – Sensations
67. Your skin feels like it’s crawling
68. Feeling like you’ve gained weight
69. Sensitivity to cold
70. Sensitivity to noise, sounds
71. Smelling odors / fragrances that others don’t smell
Physical – General
72. Feeling dizzy / have vertigo
73. Your heart races or pounds
74. Hot flashes or sudden feelings of warmth
75. Losing consciousness / fainting
76. Metallic taste in your mouth
77. Muscles spasms or twitching
78. Muscle weakness
81. Sexual desire feeling “off”
82. Skin breaking out / acne
83. Hands or feet swelling
Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.
One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.
The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.
Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.