TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion
I’ve heard back from a bunch of folks who really want me to keep this blog in place.
I can do that. I just can’t maintain it, because there is too much other stuff going on in my life.
So, I’ll just do that. Who knows? More people might find it useful.
Well, it’s run its course, and no longer have the time to keep maintaining it.
Rather than keep it around for all eternity, I’ll be taking this down next month.
Just to keep things clean.
The Concussion scene has changed a great deal since I started blogging, so I’ll let the new crop of experts handle it from her.
Adios and vaya con dios.
Got 3.5 hours last night. I got too hot overnight. Couldn’t rest. Too hot.
Took a nap this afternoon – almost an hour, but not quite.
I’ll try again tomorrow.
Onward.
Well, that was unexpected. I counted up how much sleep I got last night, and it was 9.5 hours. Amazing. After getting 4.5 hours the night before, and 5.75 hours the night before that… This is pretty cool.
Actually feeling like I got some sleep – which isn’t the same as being fully rested (I’m not)… it’s something I could get used to.
I keep thinking / talking about sleep, because it’s so vital – especially for those of us with TBI/concussion issues. A tired brain is an agitated brain. And being agitated on top of all the COVID stuff is just not good.
I suspect that a lot of the issues people have been having around the pandemic and the lockdowns and everything have been exacerbated by underlying physiology. Mentally, we can understand that we need to play it safe. But physically, we get tired – so tired – and for a lot of us, that means our brains stop working the way we need them to.
And when our brains stop working the way we need (and expect), then we can get into a “crisis of self-hood” as I think of it. When we don’t have the same kinds of reactions we expect to have, we can lose touch with our Sense-Of-Self, and that adds to our stress.
It’s not just TBI that scrambles that. It’s hardships that exacerbate our TBI issues. And when you’ve been in recovery for an extended period of time, it can be easy, so easy, to lose touch with the fact that yeah, you’re still impacted. And yeah, your brain still struggles. And yeah, it affects everything in life.
Which is why getting some sleep thrills me so much. Because it means my brain and body actually have a chance to recover and get back to some baseline of at least some competency. And after weeks and weeks and months and months of doing without a level of competency I used to be at before this pandemic hit… well, that’s pretty cool.
Wow. Amazing.
This pandemic has been messing with my sleep. I don’t get a solid 7-8 hours each night, like I used to. Now I’m lucky to get 6.
But now that I’m working from home, I can take naps in the afternoon, so that’s what I’ve been doing.
Thomas Edison hours. Sleep 4 hours, get up and work like a crazy person for 3-4 hours. Sleep 4 hours, then get up and work like a fiend.
There are worse things, I suppose.
I’ve also taken to just lying down and sleeping as early as I like. I nap a few hours after supper, then get up and shut the lights out and go to bed.
And it feels so good to sleep. It’s the only break I get, these days. And I need a break.
Last week, I was on a call with a life coach who was pitching their neuro-based approach to peak performance. They’re a trained neuropsychologist, and they had a handful of ways to “hack” the brain so you can basically flip the switch on your success. Super-charge it. Turn it on in ways that we usually instinctively turn it off.
Okay, great. I’m always up for ways to do that. I’ve been doing it, myself, for years, using neuropsychological principles.
But a couple things jumped out at me during that call, that seemed really really stupid. And I don’t mean “stupid” in a way that belittles people with cognitive difficulties. I mean it in the way that professionally trained people who should know better are leading people down a path that goes directly against what they should know, due to their professional training.
Before I go on, let me say that one of the things that discouraged me from keeping up this blog has been all the professional input about concussions, over the past several years, that has not helped. There’s a whole “concussion industry” that’s giving people really mixed messages – from people who have never sustained mTBIs or other sorts of brain injuries (that they’re admitting, anyway). And it’s made it all the harder to have a conversation about what mTBI is, how it affects you, and what you can actually do about it. I mean… I just don’t know where to start.
More on that later. Let’s get back to the professional stupidity.
Okay, so I was on this call, and the neuropsych was telling people that we can turn our lives around by breaking mental barriers. Find something that you’re afraid to do, and do it over and over and over again, using “exposure therapy”. Address your core beliefs about who you are and what you think you can do. Overcome those beliefs by not telling yourself over and over that you can’t do something. Use visualizations to “pre-wire” your system for success. And get comfortable with uncertainty.
All sorts of alarms went off with me on this, especially because the person talking admitted to having been very close with someone who had sustained a TBI years before they met them, and they had ignored the warning signs of suicidal thoughts… they’d even encouraged them to just take some anti-depressant meds — the very same meds which will set off someone with a history of TBI. Long story short, just after they told their friend to take some meds, that friend killed themself. Traumatic, to be sure.
And just as traumatic was the idea that someone who was trained as a neuropsychologist was telling someone to do something (take meds) that even I, from passing conversations with a neuropsych, know can be hugely problematic for a brain injury survivor.
Not only that, but this person was positioning themself as an expert in brain topics, immediately after revealing this massive “tell” about just how clueless they were/are.
Um. Okay.
And then they proceed to talk about how doing things like facing your fears, visualizing, and self-talk will get you on the right track and turn your life around.
Well, okay, so for a lot of people it will do that. But for someone with underlying physiological neurological issues (e.g., someone whose wiring has been rearranged by concussion/traumatic brain injury), those things will only go so far.
It would have been much more helpful, if they’d called out the fact that people with organic/physiological brain issues operate by different rules. And we have to live by those rules, day after day, if we’re going to be able to do things like visualize and self-talk our way to success.
Things like:
If we TBI survivors don’t take care of the basics — food, water, sleep, routine — nothing else is worth much. At all.
And my heart aches for all the people (like me) out there who are being told, each and every day, that their failures are due to bad messages they’re giving themselves, or letting their fear run their lives. I think it was such a waste for the neuropsych’s friend to lose their life (in part) because of the terrible advice that they should have known better than to give. I also get so sick and tired of people lecturing me/us about how we just need to get our attitudes aligned with the right sort of mentality, and then our lives will dramatically change for the better. Never mind the underlying issues with fatigue and irritability and not knowing what the h*ll to expect from ourselves and our systems, from moment to moment, because our brain injury has turned us into someone we don’t recognize anymore. We’re being blamed for results that stem directly from our organic/physiological situation, without anyone even admitting that getting your wires crossed by a car accident, a fall, an assault, or a tackle gone wrong, can and does have an effect on your brain’s function.
Now, don’t get me wrong. I do believe that pretty much all of us spend way too much time being afraid and telling ourselves the wrong things about ourselves and our chances. We don’t do enough of the kinds of things that can and will make us successful. And we generally don’t have the right mentality that sets us up for success.
But none of those performance-enhancement approaches are going to get much traction, if we don’t address the physical facts of our neurological situation. Failure is not all in our minds. It’s also in our brains. And until we learn to support / heal our brains and do the things we need to do — regularly, routinely, predictably — all the self-talk in the world isn’t going to be much help. At all.
Until we get ourselves on a good schedule – and stay there – eat the right foods (for us), drink enough water, exercise on a regular basis, and get decent amounts of sleep on a regular basis… Until we develop a new Sense Of Self that tells us who we are and what we can expect from ourselves… Until we redefine ourselves in ways that are solid and predictable… those mentality tactics are just going to be all in someone’s mind.
And the fact that a neuropsychologist was spouting all this stuff without prefacing their talk with a disclaimer… well, that just pisses me off. If they’d said something like, “What I’m about to share is intended for people without underlying neurological issues, some of which may have been sustained a long time ago, but are still having an impact in you life”, it would have set much better with me.
But they didn’t. So, there we are.
Oh, well. It’s a beautiful Sunday, and I have another 24 hours till I have to be ON for work again. So, I might as well enjoy myself. This isn’t the first time this sort of professional stupidity took the steering wheel. And it certainly won’t be the last.
Life goes on.
So, onward.
Like most people, I’ve been quarantined. More quarantined than most. My spouse is declining in their mental and physical health, and I’m frankly not sure how much longer they have. Could be weeks. Could be months. Could be years. I just don’t know. And they’re not very forthcoming about what is really going on with them, so it’s well nigh impossible to tell what the deal is with them.
Well, anyway, all the heartbreak gets exhausting to think about and talk about, so I won’t.
Not now.
I’ve been pretty stressed out over a lot of things in my life. The job. The house. The spouse. The COVID-19 situation. Now, I wouldn’t say I’ve been stressed out about everything, in the typical way a lot of people are. Let’s just say, it’s been more to deal with. And adding all the hypervigilance, the masks and gloves and social conflict around it… well, that’s just been overwhelming. Not because I’m terrified of getting COVID. I’m not. In fact, I suspect I may have had it over the winter, before it became “a thing”.
I had this really persistent cough, my chest felt like it was getting tighter every day. I didn’t have a fever, but I felt like I’d been beaten with a stick, and it lasted longer than other bugs I’ve had. It just felt different. Like some weird foreign entity had taken up residence in my lungs.
There were times it got a little scary. But I did breathing exercises to open up my lungs, and over time, they stopped feeling so constricted. And I got a break from it all. Eventually it resolved. So, that’s a plus.
The thing is, I still have issues with my breathing. When I get really tired, my lungs feel like they’re shrinking, and I have to cough to catch my breath. This is when I’m tired – so tired – and I’m behind on my sleep. When I rest – and do my breathing exercises – I get better. But the breathing problems is a sure sign that I am over-tired and I need to do something about it.
Which is good. Because not getting sleep is a killer for me.
A tired brain is an agitated brain, and there you go. Agitated. Difficult to live with. And me trying to stay calm and collected with a spouse who’s increasingly erratic, emotional, anxious, and volatile.
Well, it is what it is. I know I can’t get any help from the medical establishment, because A) they don’t understand my mTBI situation, and B) they’re all busy with COVID patients and extreme cases who have waited till they’re almost dead before they show up at Urgent Care or the ER looking for help.
Even if they were available, they couldn’t help me. Because they just can’t. They won’t. They don’t think there’s anything “up” with me, other than me looking for attention from authority figures. So, I don’t bother.
And I get on with my life. I notice the signs. I take action. I watch to see how it works out, and if I need to adapt, I do.
And that’s about all any of us can do.
I need a haircut.
Maybe next decade I’ll get one.
Yep, I’m still here.
Funny thing – it appears I’ve posted with that title before. So, this must be a pattern.
Life has been extremely busy for the past year, which is about how long I haven’t posted. I got really busy with some extra business activities, and I also had a bit of family and workplace drama.
Basically, I’ve been quite over-worked, and my spouse has been having health issues, as well, so I’ve had to cut back on pretty much everything that isn’t survival-related.
I also kind of fell out of touch with the TBI recovery scene. In all candor, I got really tired of hearing the same kinds of “breakthroughs” from all the marketers. And I also got tired of hearing people go on and on about things they don’t personally know about — particularly, medical experts talking about what TBI/concussion is all about, and how to handle it.
It’s one thing to research something and/or learn about it in class. It’s another, to live the recovery.
I’ve done the latter. And a bit of the former. But bottom line, I got tired of how much of a business concussion has become. I suppose it was inevitable, considering how much money there is to be made.
But still.
Well, people will do what they’ll do. I can’t lose too much sleep over that. If I did, I’d never sleep. And I have enough trouble sleeping, as it is.
Speaking of which, I just got back from our annual pilgrimage to the beach for my spouse’s birthday. The in-laws came along, this time, as well as another friend of mine. That was a total bust. Not a good use of time. They were all so set in their ways and so judgmental, there was no freedom to do what we wanted to do, in they way we wanted to do it. We had to constantly deal with their criticism and drama. They got all freaked out over how we did things differently than them – like getting up later and not racing around at top speed to take in all the sites all the time.
First, I don’t do the whole racing around thing like I used to. It’s been about 15 years since my last TBI, and since that time, I’ve really slowed down. It bothers me a little, sometimes, since I used to be so quick and so speedy with so many things, but there’s a lot to be said for moving at a slower pace, anyway.
Second, we need to eat a certain way. Not a lot of junk food and non-nutritious snacks. And absolutely no sugary soft drinks. When we didn’t drink their nasty colas along with them, they acted hurt, like there was something wrong with us. Like we were spoiling their fun. All we did was not drink the same things they were and not gorge ourselves on junk, and they seemed to take it personally.
People.
Huh.
Well, that’s over. Fortunately, the in-laws got so freaked out, they left early. Made excuses. High-tailed it back home. Good riddance. We love them…. but at a distance.
And we had a few days to ourselves, which was nice. Always good to have that time to recharge.
It’s also good to get back home. And get back to doing what I love to do… and haven’t done in a while.
I had a really good weekend. I made a lot of progress, and I got a lot of plans in place that I think are really going to help me get stuff done. I didn’t clean my gutters, which I really needed to do. And there were a few other things I need to do this morning, to catch up. But all in all, it was a good and satisfying weekend.
My top achievement was getting rid of some serious distractions that have been pulling my attention in all different ways. Those are old projects I was very fond of… and that I was very fond of thinking I’d ever finish. As it turns out, because I had too many things going at the same time, I never advanced down the path I was hoping to, which resulted in me getting nothing done.
So, that’s stopped.
And that’s a big deal for me. Because distraction and dissipate have been regular themes in my life, for as long as I can remember. I’m not sure what’s changed with me, but suddenly I don’t feel drawn to spread myself so thin.
Part of it might be getting a hold of my anxiety. Or just using it for something productive, instead of trying to get rid of it entirely. For quite some time, I’ve tried to manage my anxiety by calming myself down. But at the end of last week, I realized that anxiety is actually a really potent source of energy for me. And it’s constant. It never really goes away.
So, I can use up all my time and energy and attention trying to control / manage something that’s always there, anyway. Or I can redirect the energy into something productive. And really kick it.
That’s what I’ve been doing for the past several days. Kicking it, using my anxiety. Not trying to calm myself down, but directing my energy into something useful. Making plans. Creating a new pace for myself. Letting that old companion anxiety propel me forward… Turning that often-unwelcome companion into a friend.
And it’s working out pretty well, I have to say. After years and years of being so dissipated and distracted by, well, just about everything, I feel like I have a much better understanding of how my system works — and how it can work for me.
Of course, none of this would have been possible, if I hadn’t worked at my TBI recovery intentionally and with a lot of trial-and-error. I can tell my brain is behaving more, these days, because I’m actually able to focus. I used to be able to do it, at will. Then I fell in 2004, and that went away. I couldn’t manage much of anything, concentration-wise. That’s something that’s come back over time, with lots and lots of practice and (again) trial-and-error. I’ve let myself make mistakes. That’s how I learn. And I gave up worrying about “failure” in the process, which always helps.
So, yes. This is good. I’ve got my mandate for the next year — maybe two. I’m only focusing on one major project, for 2019, funneling my anxious energy into taking steps to do something about each hurdle I come up against — which are many. I will keep this blog going, because it helps me keep my head on straight and also keep focused on what’s most important to me. But I’m not working on a bunch of other side projects that I had going, lo those many years.
And, ironically, that tames my anxiety. Using it for something good not only lets it just be without judgment or blockage, but it also gives it somewhere to go. Like a rushing river, when I let it just flow and direct it in a certain direction, it takes me on some really interesting turns. Instead of damming it up and trying to control it, I just let it flow… and I ride that wave.
Which is good.
And overdue.
Onward.
I’m doing my version of “taking it easy” today.
Basically, I’m working on my projects that have been on the back burner for weeks and weeks. Five weeks, pretty much. Count them – five. Ouch. Especially considering how psyched I was about finally getting back into them, about a month ago.
Then I had to travel.
Then I got tired.
Then I had to travel some more.
Then I was exhausted.
I’ve spent the past week swamped at work – two very late-night working sessions, and both nights not getting much sleep at all.
It was really demoralizing and depleting.
But — ha! — now I’m back.
I’ve had the whole day to myself today, to do as I pleased. And it’s been good. I didn’t do the errands I typically have to do on Saturday mornings, because, well, they’ll keep. Those errands aren’t going anywhere, and I needed the down time… the time to just sink into my passion projects and not be governed by someone else’s timeframes, deadlines, limitations.
Even though I worked really hard, this morning, it was very much a vacation from all the intense work at the office, as well as the care-taking for my spouse. Oh, also, my spouse has been ill, so I’ve been doing even more care-taking this week, than I did when we were traveling. And that’s a lot. Nearly constant attention paid. Lots of interruptions. And a trip to the doctor, as well as wrangling with the pharmacist who didn’t understand why I was asking all those questions about the type of medication that was prescribed. My spouse is extremely sensitive to meds, and the pills given before made them violently ill.
So, yeah. I’m going to ask questions. Too bad. At least I kept my wits about me and didn’t yell at anyone. That’s helpful.
Anyway, I spent a great deal of time this morning (and early afternoon) mapping out specific steps I can follow to make the most of my time and not make myself crazy in the process. Now that I have it figured out (mostly), I can move forward.
I hate not knowing what direction to take. It stops me. It blocks me. I’m not a fan.
Anyway, duty calls. I’ve got some things I must take care of this evening, so I’ll sign off for now. I am very much looking forward to this next week, when I’ll have five days off work… to continue to make progress.
Broken Brain - Brilliant Mind 