I must admit that this interests me, because a number of people (including strangers) have suggested I might be “slightly Aspergers”. Years ago, I did a ton of research about Asperger’s Syndrome and the autistic spectrum, but after I found a neuropsych to help me with my multiple mTBI issues, I turned my full attention to that recovery. Still, the connections between ASD and brain injury intrigue me. More on this later….
And now, the article Diagnostic overlap between Asperger’s and ABI:
There is a significant diagnostic overlap between ‘mild’ acquired brain injuries and Asperger’s syndrome, an autism spectrum disorder. While confusion is possible, the dual diagnosis can help recovery from ABI, writes our man at the frontal lobe, Jason Copeland.
I discovered at age 54 that I had been twice brain-injured, at three and at six. My parents knew this, but they didn’t tell me: they let me thrash about unknowingly, upsetting people with challenging and then ‘inappropriate’ behaviour, rude and unempathic speech and actions, driving away friends, lovers, jobs and opportunities right, left and centre. In 2008, aged 60, I found out that I have all along had Asperger’s syndrome, and may have had it since before the brain injuries.
The way I arrived at the correct diagnosis of my problems, after decades of thrashing about in therapy with psychologists, reveals much about these overlapping categories. After we had been together for five years, my Missus read Ratey and Johnson’s Shadow Syndromes. She formed the view that I had mild or ‘shadow’ autism spectrum disorder, which amounts to Asperger’s syndrome, a recently defined neurodevelopmental disorder.
Madame’s reasons made up a clear, albeit unwelcome, commentary on how I present to others. She said I had empathy deficit, I wasn’t good at reading non-verbal signals, and I interrupt a lot, among other things — all known signs of ‘mild’ autism. I was also, she said, rigid in some of my mental habits, and highly critical of other people, notably about language — grammar, syntax, usage, pronunciation, spelling, and the implications of these things for the telling of clear, literal and unambiguous truth. My attitude to communication was simple. A word means what the dictionary says it means: people should use words correctly to say what they mean, and mean what they say. All else leads to chaos. Evidently though, such straightforwardness and honesty are pathological symptoms on this planet.
All those items were cited in Madame’s readings about Asperger’s. I resisted her view at first, but later agreed to consult a neuropsychologist; and I was devastated when that one diagnosed childhood brain injuries.
As you can imagine, trying to understand, later on, the effects of brain injuries acquired early in life, is harder than when you have an adult ‘before’ to compare your post-injury self with. You have to do a lot of introspecting, humbly accept feedback from your nearest and dearest on what isn’t working, and put those together with a new, critical slant on memories of what has gone wrong in your life. By 2008, after six years of reading everything I could find on aquired brain injury (ABI), I thought I had the measure of the damage.
I accepted, with pain and grief, that I had been substantively impaired by my first brain injury at age three, and even more by the second, at six. I had obviously suffered, all along, things like loss of emotional self-regulation and cumulative damage to the learning of socioemotional skills; dyssemia, and badly impaired theory of mind; executive function deficits and learning difficulties; memory problems; mood disorders, and marked damage to the self-awareness. A double dose of post-traumatic stress disorder (PTSD, type IIB[nR]) and prolonged duress stress disorder (PDSD) from ten years of emotional, mental and spiritual abuse, completed the picture, explaining other emotional issues, neurotic symptoms and behavioural oddities. A lifetime of personal disasters, from age three to 54, came into focus for me. I had been consciously asking what went wrong since age seven; now I had a clear and nasty answer.
A few weeks ago, I woke up one day feeling awful. I inventoried my symptoms. I didn’t seem to be getting sick. I hadn’t had too much to drink. Was it food poisoning? No—the slight ache in my stomach wasn’t, exactly, physical. And then it all came crashing back over me, and I realized the truth: I had a gossip hangover.
You know, it’s funny, how humans can be. We genuinely want to be happy, and it makes us happy to see others happy. And yet, we go to great lengths to make others miserable. As though hurting someone else is really going to make us feel better.
In a way, I suppose it does. I mean, consider the popularity of combat sports (which, based on the recent head-hunting fouls by some players, may sometimes include football). MMA, classical martial arts, boxing, rugby… and more… Not to mention Twitter. Everywhere you look, you can find evidence that people seek to relieve their own pain by visiting it on others.
I’m also included in the ranks of fans of the combat sports listed above. I’ll happily sit down to watch an MMA bout, a martial arts contest, a whole night’s worth of boxing, or a afternoon and evening full of overly combative football (e.g. Steelers / Bengals). I’m less “into” rugby (which probably sits on the cusp of not being a combat sport, depending how you play), mostly because I don’t know all the rules and I never acquired a taste for it.
And when players get hit hard enough to get knocked out, yes, I cringe. But I also get a secret enjoyment from it.
Because I’m not the only person feeling battered, these days. And when the players get up and get back in the game, it tells me that I can, too.
Now, if we can find a way to provide this same sort of community and commiseration, without causing brain damage to the players we admire and support, and tossing their futures aside for the sake of the immediate moment…
One of the amazing things about the brain is that it has an uncanny ability to get what it needs in the short term, but which actually hurt you in the long-term.
After injury, it can push you to do things that will feed its immediate need, but the ultimate result is just not good.
Take stress, for example. And danger. And risk-taking activities. All those things look like either bad habits or a taste for self-destruction. But actually, it can be the brain seeking out the pump of energy it needs to function.
After TBI or concussion, the brain’s “tonic arousal” (its general level of wakefulness) can be negatively impacted. The brain is literally more “sleepy” and doesn’t respond as quickly as it once did. Many concussed folks complain of feeling slower than before their injury, and while there may be a number of different reasons for that, tonic arousal can be a big component.
The only problem is, stress and drama actually keep us from learning. The parts of our brain that need energy and information can be literally shut off, when we’re under extreme duress. And as a result, we can end up repeating the same stupid mistakes over and over again.
Because A) We haven’t had the chance to learn from our last mistakes, and
B) There’s a part of us that actually thrives on those stressful situations.
So, it’s a vicious cycle.
And it applies not only to folks with TBI and concussion, but also those with ADD/ADHD, PTSD, or other brain-related issues that slow them down. When you need to go faster, your brain will do what it needs to get its requirements met. The only problem is, over the long term, this can be… just a little disastrous.
Well, of course, there are some similarities, but it’s her story, not mine. I’ve just gone back and updated it with a notice at the very top and quotes around the story — it was easy to fix.
I wish all misunderstandings were that easy to fix.
I’ve also been fielding some comments in Twitter about things I’ve said, that apparently came off wrong. It is really, reallyeasy to be misunderstood on Twitter. I’ve had people thinking I was attacking them, or their sport, or something else they held dear… and then they “fought back” with both barrels blazing, when all I was doing was raising some questions.
All around, it seems like the online world is just primed for misunderstanding — and consequently, a fight. All around us, we are trained to see opponents and aggressors. And that’s a huge problem, when you can’t even disagree with someone and/or challenge their thinking without being seen as an aggressor (or micro-aggressor). There’s a fantastic article in The Atlantic about this (click here to read it), which I came across a while back. It explains a lot — especially with regard to the younger generation who seem to have amazing potential, but also seem incredibly hung up over every little thing.
All the fighting… good heavens. There’s a reason I backed off Twitter for a while. But there’s so much good research coming out that gets posted there, I have to check it out. There’s seriously some great reading available, thanks to all the tweets flooding my feed. I think the key is to not follow a lot of people who get snarky and vicious and outraged. Especially about politics. ‘Nuff said about that.
Anyway, I’m taking more time to think things through before I say / post / tweet them — or trying to, anyway. It’s hard, when the moment to respond presents itself, and there’s something in your mind that seems 100% appropriate and on-point.
I should know by now that that feeling of 100% certainty is a tip-off to the exact opposite being true. The more convinced I am of something, the more likely I am to be very much mistaken. So, I do know that. But that doesn’t always rule how I react and interact. Impulse control issues and all that.
I guess that’s what keeps things exciting. I just have to keep revisiting things that need a little tweaking… making sure I don’t do more damage along the way. I also need to know when to let it go. Not everything needs to be fixed the way I want it to be. It’s also important that I hold my ground and not give into bullying. Just state my case, say my piece, and leave it at that. If people understand, then great. If not, there’s no guarantee I’ll convince them.
Sometimes it’s best to just move on and leave it at that. Or just stop following some people… which I have been doing regularly, when their tone gets too unremittingly intense.
Last week, I was caught up in researching mind-control techniques of expensive large group “personal growth” programs… and a week before that, I was caught up in some fringe neuroscience that is so far beyond me, it became apparent after two days of compulsive reading that I couldn’t even scratch the surface enough to wrap my head around the name of the phenomenon. Admittedly, it is good for me to range a bit farther afield in my reading and studies, but I can get too caught up in too many fringe activities, and then I lose valuable time for the things that I really do want to work on.
Like the handful of books I’ve started to write and got 3/4 of the way through, but are all waiting for me to pay attention to them again, so I can finish them up.
Anyway, today is different. I’m not feeling great — and ironically, not feeling great is a key factor in how well I am able to focus. When I’m feeling rested and fully functional, I get pulled off base very easily — all that energy gets spread too thinly — and I get nothing done.
But when I’m not feeling great — I’m at maybe 65% today — I know I have to be more deliberate in my activities and pick and choose. So, more gets done. And oddly, I have more clarity when I’m under the weather, than when I’m feeling at the top of my game.
I wouldn’t mind feeling just a little better today. Who knows? Maybe I will by the time the game is on this afternoon. I’ll pace myself. Take naps when I need to. And pick and choose the things I want to do.
TBI is real for folks who play collision sports. Call it “concussion” or “mild” TBI or whatever else you will. Call it “character building” and “just part of life”. But brain trauma goes hand-in-hand with slamming your body into other players on a regular basis.
Helmets will not keep brains from slamming against the insides of skulls. They literally can’t.
Coaches and parents need to get real about this, and understand the conditions they are helping to create.
Truly, I do not understand the rationale behind keeping kids playing collision sports — whether they’re young OR older. Helmets give you a false sense of security — which actually makes the situation worse, because a concussed brain can feel like a great brain. I know from many personal experiences, when I hit my head hard enough to alter my consciousness, after an instant of feeling like the lights went dim, when “the lights” came back up, I felt fantastic. Like I was superhuman. I’m not the only one.
The fact is that when you receive what I would refer to as a partial but playable concussion, there is a unique feeling of being high, of floating, of being numb to pain and unaware of other distractions. This produces a happy state that translates to a belief of invincibility and a superman complex. In some ways, it acts just like a drug. You become addicted to that feeling and want more of it. And when you get another hit, it feels even better. (read more here)
And as long as kids are wearing helmets, and parents and coaches are thinking that they’re safer because of it, we’re just creating more opportunity for kids to injure themselves — in the short and long term.
I’ve been accused of attacking football. Not really. What I’m guilty of attacking is our willful ignorance about what role concussion plays in our youth sports… and how that affects the well-being and futures of kids who are “safer” wearing the latest headgear.
It’s one thing to not know about the dangers. But when people tell you, plain as day, and you refuse to take note — or do something about it — well, that’s something else, entirely.
And that goes for all collision sports where headgear is supposed to protect the players.
So, all last week, I was starving. All the time. I could not seem to eat enough, and I chronically over-ate at dinners. I was thinking it’s just the winter blues, and a way to keep my energy up. But it was most unusual, and unlike other times when I have been able to fight cravings (or just ignore them), I could not seem to resist that gnawing hunger.
Fortunately, I did not give in to the junk food cravings. I just ate more than usual, with extra trail mix, dark chocolate, non-dairy yogurt, and fruit. I really wanted to go to town on the chips and other snacks, but I managed to keep that at bay.
A few days ago, a headache started. It was “just” a throbbing on the top and front of my head, but I also had some tingling on the left side of my face, and my left eye was weeping a fair amount. I thought maybe it was a sinus infection, but my sinuses have been clear, so…
Now I’ve got a throbbing headache. Accompanied by nausea. And shakiness. Weakness. And sensitivity to light and noise. I lay down and took a nap, earlier today, and when I woke up, I was worse.
That’s how these things often go — I’m actually worse after I take a nap, which truly sucks.
Anyway, my weekend is pretty much clear of any obligatory running around, so I can take a load off and just relax for a few days. A dark room is my friend. But that’s hard, because all I really want to do is read up on some papers I downloaded, and do a bit of thinking and writing about them.
Knowing me, I’ll probably do it, anyway. I’ve been living productively with nauseating and half-crippling headaches for years. I had a nice respite for a few months, there, but now they’re back — and it feels worse now, because I know what it’s like to not have them.
Funny how that goes… So, whatever.
Drink my water. Take a little Advil just to make a statement — sometimes if I take two doses of a couple of them a couple hours apart, they have some effect. But usually, they don’t.
Years ago, I was watching the show Northern Exposure, and in one scene, a character was saying how he didn’t believe Bruce Willis’ character could have sustained all those head traumas and kept going.
He had a point. I wasn’t yet aware of TBI and its role in my life, but that comment did stick with me.
Fast forward 20-some years, and here I am, with a much better understanding of it all.
And yes, I concur. Bruce Willis plays a lot of characters who get hit on the head and recover promptly — and never show any sign of slacking off. Knowing what I know now, it’s highly unlikely that so many of the characters we watch in movies, t.v. shows, and video games would be able to stand, let along continue to function, after the hits they take to their heads.
Meanwhile, parents have delegated the raising of their children to television, movies, and gaming, leaving them to “learn” about life through a warped lens that has nothing to do with reality. That, after all, is the draw — it has nothing to do with reality.
But do the kids know it?
I’m not saying things are so much worse now, than they were when I was growing up. I grew up watching Wile E. Coyote and the Roadrunner blow each other up, smash each other under rocks, and do all sorts of violent things to each other — and then keep coming back for more. I grew up watching Muhammad Ali pummel his opponents, floating like a butterfly, stinging like a bee, with nary a thought about how that might affect him and his opponents later on. I watched Speed Racer and all sorts of other cartoons where the characters were getting creamed regularly, but just bounced up and kept going.
Is it worse today? I’m not sure it’s ever been great.
The difference that I see, is that all the entertainment-based activities are producing physically weak and vulnerable kids who may be pushing the envelope in organized sports. They don’t have the same core flexibility and strength that we developed 30-40 years ago, just by being outside and active. Nowadays, you’ve got kids who languish in front of consoles and screens most of the spare minutes of their lives — only to be sent out sporadically to play at levels that are arguably more demanding than any when I was growing up. There’s certainly more padding, more helmets, more focus on speed and strength.But there’s less actual strength underneath that.
Back when I was growing up, you played because it was fun — not because it was your only way to afford college and have a decent life.
But now, kids are woefully unprepared for physical exercise, and whey do dive into it, they’re pushed to limits that would have seemed ridiculously extreme, three decades ago.
Then again, Bruce Willis does that sort of thing all the time.
I’m not talking about the recent event when the behavior of a groundhog (or groundhogs, depending on your regional preference) determines our future. I’m talking about the movie,”Groundhog Day” where Bill Murray’s character goes through the same day over and over and over again.
This is my life in a nutshell. I cycle through the same experiences / crap / joys / sorrows on a regular basis, each time without much active recollection of how it was before and what my experience was then. It applies to the good things, as well as the bad things, and my neuropsych is repeatedly surprised that I’m wrangling with the same issues that I was wrangling with, several weeks, months, or even years ago. Sometimes I have “new” experiences that are repeats of what I experienced only the day before, and I have to go through the whole learning process all over again.
One example I can think of was back in December, when I had that business trip overseas. Each day, I got up with this terrible, terrible dread — almost crippling anxiety over what was going to happen that day. It was awful, and I literally did not want to leave my room. I just wanted to stay behind closed doors, where I had no interaction with anyone, where I couldn’t possibly screw things up, and where I could move at my own pace and not adapt to anything new or different around me.
And each day, I literally forced myself to get dressed and go out into the world. Each day, I rediscovered that I was able to communicate, that I was capable of understanding what others were saying, even if I didn’t get every single word, and that the world outside was something to be explored and discovered, not dreaded and avoided.
Then the next day when I got up again, it was back to battling the crippling dread, the fear, the anxiety… the monumental effort of getting myself OUT the door… and the happy discovery that I could indeed handle myself well in the world beyond the hotel room. And at the end of each day, I was able to kick back and really enjoy myself in that space, just reveling — all over again — in the “discovery” that I was really going to be okay.
Now I have another business trip coming up that will take me overseas. This time I am going to a country where I do not speak the language. I have been studying a bit, which has been kind of funny — I found some audio files to learn from, but when I started to listen to them, it turned out to be all “Stop or I’ll shoot!” and “Put down your weapon!” and “How many armed men are there?” — apparently a law enforcement or military training course. At least I know how to say “Don’t shoot!” if I get into any trouble while I’m on my trip. You never know… there are some pretty rough neighborhoods where I’m going.
Anyway, the point I’m making is that for some reason, I seem to have just a terrible, terrible memory for things that have happened to me before. This is true of good things… and bad things. I seem to get myself into situations, over and over again, doing the same thing and expecting different results, and then I suffer and chafe when things don’t turn out like I think they’re going to.
Like trying to get out of the house to get to work… Time and time again, I get up thinking that I can just take a little time to check my email and/or do some little things around the house, and then I’ll be able to get to work on time. And time and time again, I get sidetracked on one thing or another… and I end up rushing and being later than I wanted to be. I make up the difference at the back end, of course, staying late — even later than I would have to, actually, because I start to warm up around 6 p.m., and it’s hard for me to take a break when I’m finally making good progress. Even so, even if I do make up the difference in the hours, the simple fact is that I do this over and over again, thinking that this time it will be different.
Insane? Well, according to some, it is. Whatever you call it, it gets frustrating, and I feel like a complete idiot.
I guess part of the equation of this apparent failure to learn, is the fact that I have to stay very present in the current moment, or I can really lose my bearings. I think this 100% here-and-now mindset has developed over years of having to navigate so many issues — light sensitivity, noise sensitivity, exhaustion, vertigo, nausea, pain of all kinds, headache, distractability, and more — but still needing to be functional. I think I just developed the habit of focusing so completely on the present so that I could function in that moment, that everything else — before and after — just disappears. Or it never has a chance to get set in my mind.
I think also the stress of daily living over the years has impaired my ability to learn. Just having to deal with all the sh*t of my issues and symptoms and the screw-ups and the adjustments and the confusions and distractions… it can get pretty stressful, and I’m sure it’s had some impact on my ability to learn.
Then again, in other areas I learn extremely well — like this language thing. I’m actually picking up a lot of good stuff, and I think I’ll be able to at least ask people for help and understand basic numbers and directions, and be able to thank people for their help, without too much struggle. Languages seem to come pretty naturally to me, and it surprises me how much sense they make to me after a relatively short period of time.
So, it’s not like I’m completely disabled with my learning. But experiential learning? There, again and again, I end up going through the same things, as though it were the first time ever.
Well, I can’t worry about it. If I approach it like it’s a grand adventure of constant discovery, and I treat each situation like a fun opportunity to have a “new” experience, it’s fine. It keeps me fresh, actually. It keeps me interested in my life. It’s never boring — that’s for sure. The worst thing I can do, is treat myself this means there’s something wrong with me, that it means I’m somehow damaged. If I don’t judge myself and I just accept that about myself — and come up with ways to work with/around my very limited memory… and I don’t get it in my head that this means I have early-onset dementia and I’m losing my mind…. I can work with this.
Hell, I’ve been working with it for as long as I can remember. I just “get lost” sometimes and I have to find my way out of the shadows and dead-ends… which I can do pretty well. I’ve had plenty of practice, you see.
Anyway, life goes on. I have a number of very interesting projects I am working on, and that’s keeping me interested and engaged in my life. I’m learning new things pretty well, and I feel good. I also got a lot of sleep yesterday afternoon, after I was done with my work. I worked from home, so I was able to just crawl into bed when I was done for the day. That was nice. I got about 7 hours of sleep last night, so that’s good, too. And I have all day today and all day tomorrow to kick back and take care of myself. Because I’m flying out in another week, and I need to be healthy and whole to make this trip.
So it goes. Part of me would like to have a better recollection of the things that I have experienced in the past, so that I don’t keep making the same mistakes, and I don’t keep pushing myself and wearing myself out. And I’m thinking about ways I could do that — maybe keep a log of what works for me in different situations, so I can draw on what has worked for me in the past… I had that kind of a log going, about 3 years ago, and it was working well for me. I think maybe I need to resurrect it, so I can continue to draw on my experiences and get my sh*t together better than I currently am. It’s an idea….
Anyway, the day is waiting, and I’ve got to get a move on. It’s always interesting and never boring… and I need to remind myself of how things have been in the past, as I work through my present and into my future.
I’ve been here before, I’m sure… now I need to figure out how to make the best of it.
I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.
I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.
Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.
Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.
The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.
I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.
Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am notexposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.
Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.
So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.
That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.
Anyway, that’s one example of things not working out as planned, and it being okay.
Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.
Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.
So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.
I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.
So, it’s back to using the tools I was working with before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it. I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.
So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.
Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.
Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.
I’ve got a big trip coming up next weekend — I’m taking nearly a week to go see family in several states… kind of a follow-up trip to make up for not having been there for the holidays (I was sick and couldn’t travel). There will be lots of driving, lots of activity, lots of interacting with relatives I haven’t seen in many years. There will be a family reunion with relatives, some of whom care about me, others of whom couldn’t care less about me. There will be time with siblings as well as aunts and uncles and cousins. All together in one big melting pot for the weekend.
This is coming on top of some very busy times at work. I’m a bit apprehensive, because I’ve been tired and I’ve had trouble sleeping, and I am concerned that it might affect my ability to deal with my family. I also worry that it will affect my ability to deal with my spouse, who is not a big fan of most of my family. We come from very different backgrounds, and my spouse is not always the most open-minded individual when it comes to differences.
I know I shouldn’t stress over this, but I am a little bit. I have to get a bunch of things done for work before I go — it’s really BAD timing, but there it is. My workload is just crazy, these days, and it will be until mid-September. Then it will probably pick up again through the end of the year. It’s hard to believe July is almost over. August is so packed, it might as well not even exist. Just busy, busy, busy all around.
But it’s a good thing. It beats the alternative. I’ve become a key contributor on some important initiatives, so that keeps me going and it gives me a sense of belonging to something bigger than myself. And I have to keep that in mind. It’s another way of looking at it — it’s a good thing, that going away for a few days is a problem. Because if it weren’t I’d be in trouble.
Likewise, if I think about the upcoming trip with my relatives, one of the reasons it promises to be so full, is that so many people want to see me. They want to talk to me, to find out how I’m doing, to tell me about their lives. They want to share a lot with me, and they don’t realize how overwhelming it can be for me. Over-stimulation has resulted in me going temporarily deaf and blind — I was with extended family members who were very high-strung, and there was so much going on, my system just shut down, and for a short time (maybe 10-15 seconds), I couldn’t see or hear anything. Everything just went silent and black. I came back (of course) and felt dazed and confused. I suspected it might have been some sort of seizure, but then I got checked out, and everything seemed to be fine, actually. So, it was probably just the overwhelm.
Thinking back on that day, which was about six months before I figured out the TBI connections to the difficulties I’ve had in my life, I can think of a number of things that made it more difficult, overstimulating and overwhelming:
I was extremely anxious about a lot of things — if I was wearing the right sorts of clothing (people around me were much better dressed than I, and I felt self-conscious in my jeans and t-shirt).
I was pretty brittle and inflexible in my expectations for the day — I wasn’t going with the flow, and when the group kept changing plans, I got increasingly uptight.
I wasn’t eating properly — I wasn’t eating the same sorts of foods I normally did.
I wasn’t resting enough — I had been pushing myself to go-go-go, the whole time, and I was very fatigued.
I wasn’t exercising enough — I wasn’t exercising at all, actually. I hadn’t been taking the walks I needed, and I hadn’t been working out regularly the way I have been over the past couple of years.
I wasn’t wearing my sunglasses — Big problem on that very sunny day. The brightness only exacerbated everything else, adding to my anxiety and stress.
I wasn’t in command of my thoughts and my reactions — I was being pushed and pulled in a million different directions, and I wasn’t driving the car of my own mind. I was letting everyone else decide for me how to think, how to talk, how to behave. I was trying to fit in and do the right thing so I wouldn’t be as conspicuous (and embarrassing) to my extended family/in-laws. The result was that I stood out even more, I was less able to participate, and I lost it (literally) for a short while that day.
Looking back, I can see how I’ve really come a long way in the past 4 years. I’m nowhere near where I used to be, and I have to remember this as I prepare for this next trip. My anxiety levels have decreased dramatically since I started exercising on a daily basis. And my whole world view has changed as a result. My neuropsych has been a huge help, keeping me honest and realistic — in a good way. They don’t let me get away with the old “stories” about how debilitated I am by my TBIs. They don’t let me easily jump to conclusions about being incapable and incompetent, just because I happen to be human. And they don’t let me make excuses about poor choices I’ve made and things I’ve done. They don’t beat me up over it, but they also don’t let me write myself off with some easy excuse about being impaired.
And that’s quite a feat to accomplish. Because I have a lifetime of experience of reaching the “logical” conclusion that there is something wrong with me, and I am less capable than I actually am. I’ve had plenty of people telling me there was something wrong with me. I’ve had plenty of people “protecting” me from myself. I’ve had plenty of people ditching me or taking me off tasks when I didn’t perform as expected.
It was all a crock, but when you hear it often enough and everyone seems to agree, it starts to sound like the truth.
But it’s not. It’s the farthest thing from the truth.
The real truth is that I have the tools and the experience and the proper mindset to approach this coming weekend in a stable, productive frame of mind. I’ve managed equally — if not more — challenging situations quite well, and I’ve come away a better person as a result.
I know from experience that I don’t have to bury myself in work in advance, trying to keep my mind off things. I don’t have to run away from it, drive myself with all sorts of stress that takes my attention off my anxiety. I can rest and relax and also get good exercise in advance. Eat well and take care of myself, and remember that I’m going to meet and greet people who actually love and care for me, even if they don’t always agree with how I live my life and vote.
That might actually be the hardest thing to handle — that anyone could actually love and care for me. That all my injuries and my issues and my supposed shortcomings might not matter nearly as much as I think they do. It could just be that I have a great time when I go on this trip. It could just be that the only over-stimulation is actually in my mind. And that if I can tame that, all the rest will come naturally to me.