The past couple of days have been a much-needed break from the flow of my everyday life. I took time off to think, to write, to consider how things are developing around me. To look at my life and consider what matters most to me, and why.
And it’s good. But now it’s time to get back in gear and get moving. I have another day off, thanks to the Memorial Day holiday, but it’s not going to be “off”. It’s going to be spent doing things that I am normally too rushed to do on a regular basis.
There’s a lot to do, a lot to get done, and that’s fine. Because that’s what I do – I get things done.
You know, when I fell in 2004 and smashed my head on the back of those stairs —bang-bang-BANG– and I got up from the fall and sat myself down at the table in the next room to collect myself, I never in all my life thought it would make the kind of difference it has. It’s crazy. It’s not even like I was in a horrific auto accident or I was in an IED blast or I was shot in the head. I just fell down the stairs, right?
Except that it was. It started out small, then turned into a big deal. Who knows what was going on inside my skull at the time? Who knows if there was some swelling? Who knows how many neurons fired so wildly that they died off? Who knows how much protein and other substances leaked out into my brain to fry my connectors? Who can say? The difficulties I experienced were NOT huge deals. Yes, I had a hell of a headache. Yes, I was disoriented. Yes, I was more quiet than usual. But it was just a fall, right?
This is one of the most problematic aspects of mild TBI — the issues that come up may not seem like a lot, at first blush. But cumulatively, and over time, they can usher in a lot more complications that just screw everything up. It’s not so much that I had these significant issues, like not being able to walk or talk or remember my name. The issues were much more subtle, and that made identifying them and dealing with them that much harder. If you don’t know something’s wrong, you can’t fix it, and I had no idea that anything was wrong for years.
In that time, I managed to lose a really great job that was a “no-brainer” for me and looked like a very promising long-term engagement. I managed to make a handful of really dumb job decisions, and I managed to spend just about every penny of my nest egg, to the point where, six years later, I’m just now starting to not live paycheck-to-paycheck, and I’m just now starting to get out from under the huge debt load I acquired over the years.
The thing about mild traumatic brain injury, is that it sneaks up on you. It introduces a hundred little variations to your life, all of which individually would not seem like such a big deal, but together can throw you into a tailspin that some people never come out of completely.
The worst thing is, even when you learn to deal with the tailspin, it’s awfully easy to forget and lose track and end up doing and saying things that get you into trouble. On a certain level, you know it, but you can forget…
Take for example, a simple thing like being off balance. I’m not talking about the kind of vertigo that has people falling over in public places or unable to leave their homes. I’m talking about just feeling off balance all day, every day, and never being able to get away from it far enough to regain your balance – literally or figuratively.
If there’s one thing that’s wreaked havoc in my life like nothing else, it is balance (vestibular) issues. It’s crazy, how much they have affected my life and screwed so much up. Now, I’ve talked to doctors about this over the years, but my problems were never enough to warrant heavy-hitter drugs (and the ones they prescribed to me, like meclizine) didn’t help at all. They just made me foggy, which is about the last thing I need. Comparatively speaking, anyway, my balance problems are “mild” — when considered just in and of themselves. But in the context of my whole life, and cumulatively, they can be a real (excuse me) bitch.
Here’s how the “TBI Vestibular Cascade” plays out with me
* Falls, injuries in the background
o TBI – multiple TBIs, actually
+ Cognitive impairment – not huge, often not noticeable, but enough to be a real pain in the ass that throws me off
+ Behavioral issues – can be a problem, especially when stressed – fatigue feeds agitation which feeds anxiety and irritability, which can spiral into rage in an instant’s flash. Not good.
+ Emotional issues – ditto
+ Functional impairments – like physical issues – sensitivity to light, sound, touch, and of course, being off balance
# Vestibular instability (feeling off balance most of the time)
o Proprioceptive disorientation – not being able to sense where my body is in relation to other things
o Experiential issues – keep bumping into things
o Spatial – see above
o Visual – so busy trying to keep upright, I don’t see things that are right in front of me (inattentional blindness caused by focusing 100% on keeping my balance)
o Taste/Smell – either non-existent or pumped up to 300% because of stress
o Tactile – see above
o Cognition – disorientation stresses me and cuts in on my cognitive resources… just can’t think
+ Learning – and because I’m having trouble thinking, I have trouble learning
* Sensory extremes – examples below:
o Visual – I’m so off-balance that all I can think about is staying upright, which means I don’t see things that are right in front of me, because of inattentional blindness, or perceptual blindness, “the phenomenon of not being able to perceive things that are in plain sight” which is caused by focusing 100% on keeping my balance. I am so busy attending to my balance issues, that I literally have n
o bandwidth left for seeing what’s in front of me.
o Spatial – Ha! When I’m off balance, I have a tough time figuring out where things are. I bump into things, knock things over, break things. Stressor…
o Tactile – see above
o Taste/Smell – When I’m stressed over my balance problems, I can have taste/smell that’s either at 300% or is non-existent. It’s unpredictable. And annoying. Another stressor, depending on the circumstances.
o Experiential – I’m having a really tough time, and I’m struggling to keep up… because I’m struggling to keep upright.
o Learning – it would be nice if I had the bandwidth to learn, but I’m in the process of trying to keep myself from falling over, so I’ll have to learn another time.
o Cognition – with the stressors of physical issues, my cognition is really impacted. I just can’t think. A lot of it, I think, has to do with being so fatigued from my physical issues, that my mental facilities are impacted.
o Sensory inattention
+ Sensory muddling – sometimes nothing makes sense, it’s all a big mish-mash of “stuff” I need to sort through.
+ Misinterpretation of clues – and sometimes I get turned around by all the stuff I’m sorting out, that I misinterpret things that are said to me, or I miss a social clue, like someone stopping talking to me, when I’m having a discussion with them. One would think I’d catch the hint and be quiet/give them a chance to talk, but when I’m whacked from being off balance, it’s really easy for me to miss those kinds of clues.
o Interpersonal social issues – result from the problems I have above
+ Social withdrawal – How many times can I totally screw up social interactions and still stick with it? After a while, it seems like a total waste of time. Really.
+ Lack of communication and interpretation – When I shut down, because I’m having so much trouble balancing, I stop communicating and interpreting what others say to me. I just don’t have the energy or bandwidth.
+ Learning differences and disabilities – As a result of withdrawing and getting turned around so many times (and not just in adulthood, but when I was a kid as well), I’ve learned to learn in different ways. These differences, when not integrated into the world around me, can become disabilities. Not because of me being disabled, but because I’m just different, and others can’t always detect and allow for that.
+ Social development and integration issues – all of the above add up...
+ Social withdrawal – and I figure, “Why bother?” It’s much easier just being off by myself.
* Vicious cycle of continued neglect and compounded physical issues
o Crime and punishment – I’ve had more close calls with the cops because of communication issues than I can count on the fingers of both hands. I’ve also been routinely punished by teachers and other authority figures for “defying” their orders, when I simply didn’t understand. My parents had to step in and save me from some of my teachers, because the teachers weren’t being clear with me, and I couldn’t let them know that I didn’t understand. Now, I’m not mapping all my crime and punishment experiences to vestibular issues, but when you’re so taxed and fried from keeping your balance and you have no energy left for social interactions, it can be an issues.
o Employment/Social functionality issues – see above
+ Financial instability – When you’ve got communication and social interaction issues, and you’re so busy just trying to stay upright that you run out of steam, it’s easy to get into financial trouble. REAL easy.
o Compromised relationships – arising from communication and interaction issues, leading potentially to:
+ Health neglect – fatigue cuts in on your ability to care for your health, including detecting when you need help
+ Worsening conditions – can go unnoticed, unaddressed, and communication issues can keep you from seeing a doctor because of the difficulties
+ Re-Injury – fatigue can stop you paying enough attention to the world around you… going faster, going faster… ending up in a jam again
o Trauma Response to Circumstances – what’s more, on top of all of this, you’ve got a physical trauma response (your hyper-alert sympathetic nervous system kicking into overdrive on an instant’s notice, whether or not it’s warranted), which makes things even more… interesting
+ “Normal” circumstances trigger trauma response – even if there’s no immediate danger, the perception of danger can set off your sympathetic nervous system, sending you into fight/flight
# Physical issues > emotional response – you can have an emotional response to physical issues… becoming emotionally overwrought when you’re off balance (this happens to me a fair amount – I tend to start to panic, when I feel myself getting off balance yet again)
# Social issues > trauma response – unsatisfactory social situations can trigger you… like that flood of dread that comes up when you contemplate going to a party, after the last time you went ended in some sort of humiliation or ridicule.
# Interpersonal issues > trauma response – bad interpersonal interactions can also produce a trauma response… like seeing a cop in your rear view mirror and physically re-experiencing the last really unpleasant encounter you had with a “statey”.
Vestibular issues may resolve on the surface, but the underlying experiences that accompanied them before remain, setting up an associational cascade of PTSD-like reactions to the conditions that resemble the original problem.
It’s a lot, I know. But this is all consistent with my own experience. I haven’t gone to the great extremes of incarceration and divorce and bankruptcy, but I’ve been damned close, and the fact that I’ve narrowly escaped so many times makes me believe in a Higher Power of some kind. In fact, the perception of others that all this couldn’t possibly come from something as simple and as “minor” as vestibular/balance issues, is testament to the very human tendency to play down things. And it speaks to why and how mild TBI is so often under-estimated in its ability to disrupt, even destroy, lives.
It’s not that I’m looking for sympathy or to have anyone cluck their tongues over how hard I have it — I think it’s just important to point out the ways in which TBI symptoms can cascade into one another, building up and building up until they turn into serious problems that aren’t easily dealt with.
The key for me is to head these things off at the pass and keep myself from getting too dizzy to begin with.
[x] Stay rested – check
[x] Avoid dairy like the plague – check
[x] When I AM dizzy, slow down and take my time – check
[x] When I AM dizzy, make sure I get extra rest – check
[x] When I AM dizzy, DON’T PANIC – check
Because I know what can happen, if I don’t take care of myself. It doesn’t always progress to the extremes described above.
See also – New for 2012: The wars we wage – of sport, concussion, and our warrior style – Part I – Part II
I’ve been thinking a lot about this statement as it’s used in contact/collision sports, especially after reading this post over at The Concussion Blog. Something about hearing high school athletes saying, “Pain is weakness leaving the body” has always gone against my grain, so I’m doing some digging in search of what’s behind that for me. What I’m discovering is a vein of frustration that runs deep.
I seem to remember having heard this statement used in a military context, so I Googled the quote and found this over at Urban Dictionary:
“Pain is weakness leaving the body”
The above is a piece of propaganda used by the US Marine Recruiting office to get more people to join the marines. Its also figuratively true, and very effective in their commercials.
Pain is weakness leaving the body
If you punch a tree over and over again every day for a few years your hand won’t be broken (unless you punched TOO hard). Instead, it will be toughed, and calloused, and you will be able to take far more pain.
When a problem in life is emotionally painful you are emotionally scarred. But if you learn from it, the emotional scars will scab over and you will be a strong, more experienced and mature person because of it. When this occurs, as long as your emotional pain does not destroy you, it will eventually make you strong if you allow it too.
If you run 15 miles daily for a year, your body will be in a lot of pain, especially the first month or two. By the end of the year, your muscles would be so broken down and rebuilt you would be very strong, provided you had enough nutrients, water, and rest during the year. If you tried to do the same with 50 miles a day, you would end up dead.
Pain truly is weakness leaving the body, provided that the pain inflicted is small enough that you can handle it and grow from it, emotionally or physically.
The complete statement and the information behind it is important. For a number of reasons.
First, the statement is classic propaganda — a partial truth used in a way that triggers emotions that motivate you to take action that is not necessarily something you would do if you thought about things logically. It uses emotion and a promise of fulfilling a wish (to become tougher, less susceptible to pain) to induce someone to sign up for duty which may in fact result in their death.
Second, the grandly succinct statement is followed by an explanation that tempers and explains the statement, but which is left out and forgotten in the repetition of the simple statement “Pain is weakness leaving the body.”
your hand won’t be broken (unless you punched TOO hard)
as long as your emotional pain does not destroy you
provided you had enough nutrients, water, and rest during the year.
If you tried to do the same with 50 miles a day, you would end up dead.
provided that the pain inflicted is small enough that you can handle it and grow from it, emotionally or physically
All of these qualifiers are absent — absolutely absent — from the implied bad-ass-ness of the statement
Pain is weakness leaving the body
And that serves only to cloud the issue and completely gloss over the qualifiers which are about as easily remembered as the fine print on a contract you sign for crappy cell phone service, only to discover that you’re locked in for 2 years without any hope of escape, unless you pay boocoo bucks.
Seriously, how many people qualify this pronouncement with the bullet points above? See how this sounds…
“Pain is weakness leaving the body — so long as you just take it in little bits and pieces and eat right and rest up enough to recover from the damage you’ve done to yourself. You really need to heal, you know…”
“Pain is weakness leaving the body — so long as you don’t do such a job on yourself that you’re impaired for life. Just be careful!”
“Pain is weakness leaving the body — so long as it’s meted out and supervised by a trained professional who has a full medical staff to back them up and get you the proper care, if you overdo it.”
You don’t hear anyone saying that, do you? It sounds silly — and a lot less tough than the 6-word announcement that implies that once you have expelled all weakness, you will feel no more pain.
Third, this is a military statement intended for legal adults… who are going off to situations where they are to be trained to kill and to die. This is not a small thing. For someone facing imminent death – as is always the chance, when you go into battle – ignoring pain is not an option, it’s a requirement. It’s life and death, and perhaps the most important quality a soldier can cultivate is the willingness to sacrifice ALL for their cause. There is no tomorrow. There is only today — This moment alone. And whatever sacrifices you make are (ostensibly) for the greater good. If you’re crippled or maimed or brain-injured, it’s for a greater cause — something much larger and far more vast than anything most of us can imagine. Plus, it’s your job. Granted, it doesn’t make survival any easier, especially if you come home to a country that’s ill-prepared (or willing) to help you back into civilian life, but the bottom line is, serving in that capacity is about putting everything on the line, and it could very well mean your destruction.
Is this the kind of mentality and approach we want for high school football games, which are by their very nature transitory introductions into the larger “field of play” of adult life? Is this the ethos we want 16-years-olds to espouse? Lay it all – everything – on the line, with no regard for the rest of their lives past that game, never mind that it can maim them permanently… and for what? And do we want our student athletes to treat others on the field like enemy combatants — like Al-Quaeda or domestic terrorists who deserve to be obliterated? Do we want to blur the lines about who’s the enemy and who is not, on the playing field and off? Do we want to teach our next generation to use their bodies as weapons against perceived threats, with no thought to the consequences? Life-altering concussions and brain injuries in high school sports are the most cruel of injuries — you may end up sacrificing everything for something that ultimately doesn’t really matter (aside from fond memories later on down the line). Or you could end up doing the same to someone else.
And for what?
Let’s put this in perspective, shall we? Serving your country is a high honor that demands more from those who serve than many people would be willing to do for anyone or anything. It is life and death. It is the stuff that turns the world. It is what makes and breaks countless lives and nations and cultures. It happens on a scale that utterly dwarfs a high school football game — a season — the whole Friday night lights culture.
Hearing high school athletes using that kind of language runs so roughly against every fiber of my being — my great-uncle was killed on D-Day on the beaches of Normandy in WWII and was posthumously awarded a Bronze Star for single-handedly holding his machine gun position on the beach and pinning down the German gunners, so that “his section could maneuver into strategic positions”… and we could prevail. Pain was — for him — weakness leaving the body.
How does this compare to a Friday night lights contest? I don’t want to take away from the importance of the game for anyone, but members of my extended family have paid the ultimate price on the field of battle. Even the ones who survived, returned to suffer for decades with the wounds of their war. To them, the honor of that statement belongs.
Fourth — and I think this is perhaps the most important — the belief by high school students that they should shrug off pain and play through it, is utterly erroneous. Because we’re talking about students — young people still growing and maturing, whose bodies and brains have a ways to go till maturity. I’m not taking away from anyone, I’m just trying to put this in perspective. When you are 14, 15, 16, 17 years old, you have years to go before you are fully mature. It’s not a slight, not an insult. It’s the truth. The human brain doesn’t get out of its youthful development phase till you’re 24 years old. I repeat, 24 years old. If you are 14, 15, 16… and you sustain a brain injury (as I did — several times), you have at least 8 years left before your brain can be said to have stopped that early maturation phase. What effect early concussions have on the developing brain, we have yet to find out.
Now, I was in as much of a hurry to grow up when I was in high school as the next person. I was even in a hurry when I was in junior high. But when I was growing up, being an adult — proving you were a real man or a real woman — was not about playing games and battling pain — it was about going out, getting a job, being a responsible individual who could hold their own in adult company, both intellectually and logistically. The most mature peers of mine were the ones who had jobs at night or after school and all weekend, who had real-world responsibilities in the workplace and who cared more about paying their taxes and keeping their cars running, than scoring touchdowns on the field. Football players were popular, sure. But everybody knew, the real men were the guys who were the night supervisors at the local department store or supermarket, who had their own cars and saved their money for a house or education.
Maybe it’s just the time I was raised in, as well as the area where I grew up — which was rural and of old-school hard-working northern European extraction. But it seems to me, as I look around, there is far less emphasis now on students going out and getting jobs and learning to work, than there is on participation in sports. Maybe it’s a class thing. Nouveau riche parents don’t want their kids to have to work. They want to show the world that they’re wealthy enough to educate their kids and give them every advantage. But the area where I grew up was a rural, working class farming environment, and the most valuable inheritance from your parents and community was learning how to be a productive member of society. If you wanted to be a grown-up, you worked, you didn’t just “work out”.
I’m probably being harsh, but this is serious stuff that just drives me NUTS… not least of all because this is the next generation of Americans who are being harmed by this inappropriately applied philosophy. If I rant, it is out of love for my country and concern for perfectly healthy young people with so much potential for making a difference in the world… our true Homeland Security… who are harmed by the foolishness and narrow-mindedness and short-sightedness of adults who themselves may have been brain injured in their own high school careers, and whose judgment may be blurred because of it.
Who’s going to let their kids’ future be impacted by someone whose own capacity for risk assessment is impaired, whose own head injuries were undiagnosed, and who may in fact be suffering from an invisibly spreading assault on the brain that can only be detected by specific chemicals dropped onto thin slices of their frozen brains after they have died?
Seriously folks, let’s get real about the impact that CTE and repeated concussions has had on the whole discussion about football, to begin with. Dave Duerson was in charge of determining if his former teammates were in need of medical assistance, and while he denied many of their claims, he himself was impaired by his own undetected and unacknowledged neurological medical issues. It seems to me that the strongest opponents of amending football’s deliberately harmful violence probably need to undergo neuropsychological testing, themselves, to see if they are even competent to discuss this. It’s not a slight. It’s just objective consideration.
I’m ranting, I know. But seriously, lives are at stake. When I think of all the pain and suffering I’ve been through because of my own multiple sports-related concussions, and I think of all the student athletes out there who may be experiencing the same thing — even worse — because people are too busy denying there’s a problem or downplaying it, all the while telling student athletes that they should ignore (or even welcome) pain, because it’s “weakness leaving the body” — it makes my blood boil. Yes, I have come a long way since my last injury. Yes, I have overcome a great deal, and I’m living proof that concussion and repeated mTBI doesn’t need to destroy your life. But the price I have paid… I wouldn’t wish it on anyone. My brain injuries started before I was old enough to protect myself and make conscious choices, and in years before anyone knew enough to take my injuries seriously. A number of my mTBIs were also accidents. The thought that adults are putting students in harm’s way out of arrogance and ignorance, incurring completely needless and avoidable injuries, and not giving them proper treatment… all the while reinforcing the “don’t be a pussy” mindset by saying “Pain is weakness leaving the body,” and increasing the risks… it’s almost unfathomable. In this day and age? With all that we know? How is this possible? (Unless it’s directly related to prior head injuries among the people who are debating the issues — I’m just sayin’…)
If you take nothing else away from this (given my rant), I hope you at least take this:
Pain for a student athlete is NOT weakness leaving the body.
It is the body telling the mind that it needs to STOP doing what it is doing, because IT IS DOING DAMAGE TO ITSELF. The reason we feel pain in the first place, is because our bodies are detecting a threat that we are either not aware of, or we are ignoring. It’s the body’s way of saying, “Knock it off – you are harming me.” And the more pain there is, the higher the stakes. Pain is not a frivolous distraction, the domain of pussies and pansies. It is a real thing, the one (and sometimes only) way the body has to communicate to us when we are being idiots about protecting our own safety. Pain should be respected and listened to, not dismissed as the price you pay for character development.
If you’re in anything but a life-and-death situation where the risk of losing everything outweighs the damage you’re doing to your body, well, that false-bravado attitude is just plain stupid.
For my great uncle on the beachhead near Colleville-sur-Mer in France on June 6, 1944, it made sense to ignore whatever pain he experienced, because it was for a higher purpose — the protection of his section’s mission, and the overthrow of the Nazi regime. He also was a 24-year-old man who left school when he was younger and his father became ill, and he supported his family with two jobs. On D-Day, that man made the ultimate sacrifice, “realizing that he was facing certain death… ” His was a “heroic, self-imposed mission” and he made a conscious choice in an honest-to-God real life battle that would have lasting consequences. His sacrifice served someone else, not just his own ego.
But the sacrifice of young brains — young lives — for the sake of staying in a school-age game… whom does this serve? The game is passing, but injury and struggle and difficulty are lasting. And who bears the brunt of the pain? The former player, not the coaches and other players who pushed them to stay in.
Concussion and brain injury (even “mild” traumatic brain injury) is no laughing matter, and it’s not something to be shrugged off. It has consequences. It often comes at an extremely steep price.
Pain is not always weakness leaving the body. Sometimes it’s weak-mindedness betraying the body.
I’ve been thinking a lot about my work with my neuropsych, lately. My work has gotten past the basic survival stuff, where I’m just getting my head around what is going on with me. I’ve gotten to the point where I’m looking beyond my immediate issues and focusing on the big picture, to where I can make a difference in my own life — and possibly the lives of others.
I’ve always had a deep need to make difference beyond my own individual life, and so often my issues have gotten in my way. Susceptibility to distraction and short-term interference… the anxiety that would come up and completely turn me around. And of course the anxiety is fed by the cumulative effects of that “TBI Cascade”:
It doesn’t always happen like this, but the fact that it has happened in the past, makes me susceptible to anxiety about it happening again.
I think that’s the biggest thing hanging over my head – it happened before. Is it going to happen again? The fatigue, the confusion, the agitation, the busy-ness, the frustration, the pain, the distractability, the failure to understand, the failure to be understood. Anxiety over all this actually makes things worse, and it can be a real killer.
One of the ways that my neuropsych has helped me immensely is by helping me think through how to handle these things. The main thing they’ve accomplished is convincing me that I can handle these things. That I do have the resources and the capability to deal effectively with these problems. Before (as in, just about all my life), I would let them get the better of me, and I would get so turned around and upset by what happened — and the prospect of it happening again — that I would be completely thrown off track. Not good. Not good at all.
It didn’t help matters at all that people around me all treated me like the things that I had done and said in the past defined me in the present and also determined my future. What a load of crap. I see that now, but when I was 10 years old, being browbeaten by my father for being “stupid” and screwing up all over again, I couldn’t see that. The adults in my life couldn’t see it, and I certainly couldn’t, at that age. I mean, part of me knew they were all wrong about me, and I wasn’t stupid and retarded and mentally ill, the way they said I was. And I constructed a private world inside me (not unlike Marwencol) where I could be safe and act out in my own mind the kinds of scenarios where I was safe and secure and could be fully functional.
I had a very lively imaginary life, when I was younger. It was the one place where I could be safe and normal, and nobody gave a crap about the things I messed up. Nobody ever gave up on me in my imaginary place, they always gave me the benefit of the doubt, and I was always treated with respect and high regard by the imaginary personalities I invented and interacted with behind closed doors.
Even up till the time when I started my neuropsych rehab, I was engaged with this imaginary world. I would have some great conversations with people in the car, driving to and from work. Some people talk to themselves. And I guess I was, except that my conversations were always directed towards another person who I imagined was there. That person would always be attentive and respectful and treat me like an intelligent individual. I didn’t have to constantly prove myself to them. Maybe I was talking to my “better angels”. But at least I was interacting. Some people don’t even bother to pretend. They just shut themselves off and don’t even try. Or they find solace in playing roles in the outside world that someone else invents for them. They aren’t really there and the roles aren’t really them, but they find solace in them, and they are able to function in the world as a result.
It’s like I was role-playing for life.
But anyway, back to complaining… I have to say, after working with a neuropsych for the past three years, I have found my physical issues to be much more manageable. Fatigue can be managed by just being realistic and mindful about my energy levels. And the pain has been greatly alleviated by reducing stressors in my life (not to mention exercising more and seeing a network chiropractor regularly for several years). So many of my really BIG physical issues — tinnitus, pain, balance problems, sensory sensitivities — arise from fatigue… when I manage my fatigue with common sense and responsible choices, many of them let up. And so many of my cognitive issues arise from the physical issues that arise from fatigue, so having a way of dealing with the fatigue and sleep problems and energy levels, that I get to solve a bunch of different problems by handling that core issue.
So, where does complaining come in? Well, basically, it comes into play when I am feeling hugely sorry for myself, and I am thinking that I can’t do anything about what’s going on with me. I tend to complain when I am over-tired and in this mindset that I am “stuck” with whatever bad situation is in front of me. Instead of doing something about it, I belly-ache and whine and moan about this, that, and the other thing. And nothing gets done. Nothing changes.
Which is completely contrary to the truth of what is possible. The truth of the matter is that I do have the ability to change things. I can make different choices in my life that lead to different outcomes. I needn’t stay stuck in how things are, when they don’t serve me and my goals. Of course, in order to see that things don’t serve me, I need to know what goals I have, what I intend to accomplish, and how to bring that into being.
It’s all management issues. And when I get overwhelmed and tired and forget what I’m about, it can be all too easy to fall back into complaining-mode.
But why complain? Really? I have more power than I realize, to effect the kinds of changes I want to see in my life. We all do. The problem is when I/we get too fuzzy and foggy and overwhelmed with minutiae to develop a clear idea of what those changes can/should be.
That’s where long weekends like this come into play — an extra day to rest and rethink my life. I do a lot of rethinking on a regular basis. I have to back out of the busy-ness of the day-to-day and remind myself of what I want to do with my life, as a whole. It’s not just about what I want to accomplish at work, not just what chores I need to get done, what tasks I want to check off my to-do list. It’s about something much larger and more important, more lasting, more enduring, and ultimately more impactful, than just taking care of stuff that needs to be done.
Why complain, when I can create something far better?
I have done just about everything I can do to meet this.
I am both at my wits’ end, and holding it together reasonably well.
I’m told the multinational corporation which owns my immediate employer will be phasing out the division over the next three years or so.
Who can say if it’s true?
But I have to wonder, is it really worth it, working this hard for something that may not be around much longer…
And I have to say, yes. Because I’m doing this for me, not for my employer. I’m doing it for my long-term future as well as my immediate prospects. I’m working like crazy and driving towards this deadline, because of the experience and what it brings me as a person. I’m doing it for my resume, for the stories, for the days to come when someone starts complaining about something that pales in comparison, and I have a point of reference to put everything in perspective.
Just got home from another visit with my neuropsych, and we both agree that a tremendous amount of human potential is squandered on people “accepting their limitations” — especially TBI survivors.
The thing is, TBI may be a part of your life for the rest of your life, but it doesn’t have to limit your experiences. Obviously, there are situations where you have to adapt to some changes, but there are a ton of ways to either work around something that’s problematic, or figure out how to avoid the problems that arise, entirely.
It takes creativity and determination, but it can be done.
Now, it’s time for me to stretch. I’m back from a day of work and my appointment, and I still have a little bit of work to do tonight. Stretching helps me not only relax, but free up trapped energy I have that’s stuck by tension. When I stretch, sometimes I feel like I’ve woken up all over again.
One thing that jumped out at me, is how much the folks in the video stressed the importance of education in early intervention with MTBI. When people learn all they can about their injury, it helps allay anxiety, which really helps recovery.
Lack of information and education adds to stress.
“Is this normal?”
“What’s wrong with me?”
“Things don’t seem right since my accident.”
“What can I expect from this?”
“Will this ever get better?”
All these are perfectly normal and expected questions to ask, when you’ve sustained an MTBI or a concussion. And no, you’re not alone.
One thing I really hope to achieve with this blog, is education of the general public (and hopefully some experts) about the personal experiences that come along with MTBI. Because it never really goes away. It’s always there. But things can and do get better. And they should be taken seriously. So you can get better. Everybody is different, but our human experience remains the same. That’s what I’m sticking with.
I’ve been thinking a lot about the video I watched yesterday on The Management of MTBI, thinking about the different ways I can use what I watched.
No matter how long I am at this recovery business, I am always learning new things — or remembering things I once learned, but have lost sight of. What jumped out at me yesterday was actually more a sense that came from the video — a sense of expertise, a sense of hope, a sense of commitment to helping patients and their families and social network with the often difficult business of recovery.
What also jumped out at me was how they did NOT minimize “mild” TBI, because it’s not seemingly as severe as other brain injuries. Mild TBI is no joking matter. The effects of it can hold off on manifesting for weeks, months, even years. And it can wreak untold havoc on your life, even as things are supposed to be working out just fine.
Mild Traumatic Brain Injury can be a real bitch to work with, and it was very encouraging to see some very educated and very advanced individuals saying that out loud. Most of the educationally and professionally advanced health care providers I’ve worked with have had huge gaps in their knowledge about TBI. Even my present doc, who is one of the best I’ve ever worked with — if not THE best — knows relatively little.
The difference is, they’re interested in learning. And they have really turned around their attitude towards me — not stopping me from making notes, not telling me I don’t need to ask more questions, and slowing down their rapid-fire “I’ve got this” bravado-fueled hustle, to give me a chance to follow. I’m not stupid. I just need a few extra moments to make sure I’m clear about what’s going on.
The difference between my present doc and the docs before them, is commitment. My present doc doesn’t rush me out the door. They stick with me long enough to see what the hell is going on with me.
The difference between the professionals in the Brainline video and so many other professionals I’ve come across, is commitment. They are obviously very committed to both educating and providing invaluable services and advocacy for people with mild traumatic brain injury. And they don’t just sweep us under the rug, because our injuries were “mild”. They very clearly appear to be there for us — there for me, as much as they can be, from the other side of the video.
But they’re there.
In my own recovery, too, I’ve noticed the biggest differences in my experience, when I was committed to my recovery… to doing what needed to be done, and not shirking the work that’s involved. There is work involved, and it doesn’t just stop, once some of my most pressing issues apparently resolve themselves. I’ve got to stay mindful of my actions and thoughts and behaviors (and the consequences) and actively work towards improved solutions — at all times, and at all levels. It sounds exhausting, but it’s really just about paying attention. Making the commitment to paying attention. Making the commitment to following up and following through, not getting distracted by a million other things, and never making any progress.
In my day job, too, there are many parallels with my recovery. I work in a fast-paced environment rife with distraction and interruption. If I allow myself to just go with that flow, it takes all of three hours for me to get into real trouble with what I’ve promised to do for others. It doesn’t take much to get me off-track from what I should be working on and have me wandering off to do other things that I don’t even care about.
But when I am clear on my commitments — Why am I doing what I’m doing? Whom am I serving here? What do I hope to accomplish with this… and again, why does it matter to me? — things fall into place. And the energy and focus and effort required to do all these things actually comes easily to me. It doesn’t even seem like work anymore. It’s part of my life. It’s part of what I do. It’s part of who I am.
Watching that video yesterday, really moved me. For once, I felt like someone really truly understood. And it was great to see the titles that these folks had and see the listings of the organizations they are associated with. Not so much for me — I have no medical records of my multiple traumatic brain injuries, so the chances are slim to none of me ever being able to get help from those folks (or anyone like them) — more for the thousands upon thousands of individuals who sustain concussions / mild traumatic brain injuries, who do have both medical records and access to a medical system which is (however slowly) becoming increasingly aware of the effects and complications of mild traumatic brain injury, and developing new ways and better approaches to dealing with it.
And now, as Monday kicks off, the school bus picks up the kids across the street, and I look forward to my day, I stop to look over my list of things to do. I check my energy levels chart and see that I’m actually above average in how I’m doing, and I look forward to the day.
So, I went for my drive yesterday, after I got done with my Big Task of the Day. I stopped and got myself a snack, then headed out on the roads, just driving. The sun was out, and I had my music on, and the more I drove, the more awake and alert I felt. (I guess sitting at the computer for six hours straight kind of numbed me out.) I took turns down roads I normally don’t have the time to explore, and I meandered around my town and the neighboring towns for some time. Eventually, I found myself driving up the side of a mountain to a hiking trail I had heard people talk about. It was getting late in the afternoon, and rain was threatening, but I decided to head up, anyway. Even if it rained, no biggie. I was probably going to get pretty sweaty from the climb, anyway. A little rain might be nice, actually.
So, I parked near the trailhead, outside the gates, which were supposed to be already closed, I grabbed my phone (just in case), and headed up the side of the mountain. I didn’t have the right shoes on — a pair of Tevas, which I suppose would be okay, but weren’t really suited for heavy hiking. But I went up, anyway. I figured, people have been climbing up sides of mountains a lot longer than state-of-the-art hiking shoes have been in existence. Besides, if things got too hairy, I could always climb back down.
It turned out to be a pretty good hike. Took me about an hour to get up and back down. The trail was steep, but it had plenty of options for hikers of different abilities. I crossed paths with a number of people, either going up or coming down. Several pairs of women, looking like harried mothers who grabbed an hour for themselves to go for a hike and talk about their lives… an older couple, the woman looking tired and eager to get down, and her husband/partner looking like he was really enjoying the hike… an extended family of kids, parents, grandparents… and a lone guy with a military haircut who was running up and down the side of the mountain, boulders and rocks and roots and all.
It was a rigorous hike. Half-way up, I seriously considered turning back and heading to the car. But I could see the summit from where I was and, dammit, I was outside on the one sunny day we’d had in over a week, so I wasn’t going to waste the experience. So, I kept on. Got to the top. Looked to the west and the setting sun. Then headed back down — very, very carefully — and got off the mountain just as the first raindrops were coming down.
So, what does all this have to do with active listening? I’m talking about hiking, right? Well, kind of. See, one of the most remarkable parts about yesterday was that I was able to interact with people on the trail. I actually exchanged words with them, had little conversations with them. Like normal. Like I never had before I started working with my neuropsych. In years gone by, I would have averted my eyes and not said anything to the people I encountered. What’s more, in years gone by, I would have avoided going on a hike by myself, because I was too anxious about getting lost and not being able to ask for help. That hike yesterday, and how much it improved my mood and sense of well-being, was made possible by my new-found ability to communicate with people.
See, here’s the thing. I used to be completely, 100% convinced that I could not communicate with other people. Seriously. It was to the point where I (and others) considered myself a slight bit autistic. I just wouldn’t voluntarily talk to people at great length or in any depth. I would get lost in the conversations. I would forget what we were talking about. I would react strangely, and say things I didn’t mean to say. I just did not do a very good job of communicating, even though I did a pretty good imitation. What was really going on was I was pretending to talk to people, but the minute the conversations were over, I’d put them out of my mind or dismiss them.
Knowing what I know now about the effects of multiple TBIs on working memory and short-term memory and my susceptibility to distraction, I realize now that I simply was not fully engaged in conversations with people — for most of my life. When I was a kid, I had trouble hearing, and I didn’t feel comfortable asking for clarification, so I decided to interpret things the way I wanted to, not based on feedback from others. And I got in the habit of doing that. As I got older, and I had more head injuries, my working memory capacity apparently shrank, and I would literally forget what people had just said to me a few minutes before. And/or in the midst of the conversation, I would get distracted and lose the train of the conversation.
This still happens, in fact. It hasn’t improved, I’m sorry to say. However, now I have a way to deal with it. It’s called “Active Listening” and it’s when y0u are fully engaged in a conversation with someone, repeating what they say to you, and asking for clarification when you don’t understand something. It’s not about covering up my cluelessness. It’s about getting clarification because I actually care about what people are saying to me, and I want to understand.
Active Listening really, truly is amazing. It’s changed my life. Even when I am struggling with terrible distractability (as I often do), and I’m susceptible to short-term interference, and I’m forgetting what someone just said a few minutes ago… when I engage with the person I’m talking to and I make sure I understand what they are saying — asking for clarification and repeating back what I think they said — I can actually “get” what’s going on. I can understand what people are saying to me. I can get it. I get it.
Which is totally amazing. As recently as five years ago, I was convinced that I was a lost cause, when it came to communication. I was off in my own private Idaho, off in my own little (and I mean little) world, telling myself that I was incapable of engaging in extended conversations.
But then my neuropsych got talking to me, and I started to interact with them. They gave me space to ask (what seemed like) really stupid questions — even say “I don’t understand,” and have it not be a federal offense. All my life, I never felt comfortable admitting that I didn’t understand what people were saying to me. But I remember so clearly, the first time I can ever recall admitting that I didn’t understand what was being said to me (by my neuropsych). And I remember how much of a relief it was, just to say it. Kind of like cycling stars admitting that they’ve been doping regularly for years. Something that was so taboo, just getting said. And once I did admit that, and I was able to get clarification, a light went on. And that light began to shine and shine and widen and widen and gradually came to illuminate my whole life in ways I never dreamed possible.
What I learned was that people would NOT think poorly of me, if I admitted I wasn’t following what they were saying. What matters is that I’m attempting to understand. Apparently, a lot of people don’t make the effort. But I do. Absolutely, I do, now that I realize that I can. It’s not that I can’t understand. It’s that my brain has been rewired to “drop” things far more quickly than I’d like (or often think it will), and I’m prone to getting distracted in the middle of a conversation, so small wonder that I get lost at times. It’s not that I’m deficient or stupid. It’s that I’m distractable, and I don’t factor in my working memory capacity (or lack thereof) when I’m talking to people.
When I do factor in those aspects of my existence, however, I am free of them. Because I can manage to them. I can be aware of them, and I can deal with them. And when I sense I’m not getting something that someone is saying to me, I can always pause the flow of the discussion and get clarification.
As a matter of fact, I’ve discovered that a lot of people actually love it when I stop the flow to ask for clarification. People like to talk. They like to be heard. They like to know they’re being heard. So, no, they don’t mind stopping to explain. They rather enjoy it, in fact.
When I let that happen – get out of my own way and forget about looking “stupid” to people because I need clarification – good things happen. A lot. Things like going out for drives and hikes in the woods, because I know that whatever happens, I’ll be able to ask for help (directions, instructions, tips, whatever) if I need it. Things like passing conversations exchanged (like a normally social person) on a trail in the woods on a beautiful day.
And when I interact with other people, I can develop myself further. Because I need to. I think it’s true of everyone, but I’m working my way back from a serious developmental deficit that arose in large part from my perceived inability to communicate with others. I haven’t just been a “quiet” person all my life. I’ve been a deliberately silent person. Because I would get lost during conversations. And I couldn’t take the chance of anyone finding out. And I couldn’t figure out how to get un-lost. Not on my own.
So many years spent in fearful silence, terrified that someone would find out that I didn’t understand what was going on… that I would find out that I didn’t understand what was going on, because I didn’t realize I’d gotten off track, about 10 minutes ago, and I didn’t have a clear idea about what was really being discussed.
Those days are done. I know what to do now. I can go for a drive. I can go for a hike. I can live my life.
Feeling great about the progress I made today with this documentation I needed to write. Feeling really, really good. It reads well, I think, and I hope my clients will be happy with it.
Now I need a break and a reward. Time to go for a drive. Or maybe I’ll lie down for a nap…
I’m watching my energy levels, seeing how they go. I’m dipping down a little bit, after being all charged up for several hours. Part of me would love to just go out for a drive. The rain has let up a little bit, and I’m stir-crazy. I’ve been in a house/office/building all week, and it’s getting to me.
Yes, time for a drive. Then I’ll come home and nap.
One of the things about having all this time to myself, is I usually push myself harder than if I’m not alone. When I’m on my own, I tend to try to pack everything in. But that works against me.
So, I’ll pace myself and see what happens. Good things, I’m sure.