Wow – I actually got some sleep last night

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.

 

The really stupid thing that got me back on this blog…

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:

• Get enough sleep
• Drink enough water / stay hydrated
• Get regular exercise
• Find ways to calm down the over-active and easily amped-up system
• Keep your blood sugar steady by eating decent meals regularly (and stay away from junk food)
• Have a daily routine that reinforces your understanding of who you are and what you can reasonably expect of yourself, day after day.

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.

Putting Anxiety to Good Use

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.

Taking it easy… sort of

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.

 

I’ve missed this

I have to say, I have missed this blog. I’ve been so busy, over the past year or so that I just haven’t done this justice. Or maybe it just felt like I was repeating myself and I was boring my own self.

That’s been known to happen 😏

But things have both leveled out and become chaotically familiar. And I’m not as scattered as I was before. So, it’s time to go a bit deeper with certain parts of my life and really find out what’s there. We don’t have enough depth, in my opinion, so rather than complaining, I’m going to do something about it.

One of the things I need to do is get $$$ support for this blog. I’ve been wanting to do it for years, but I’m feeling even more impetus to do it now. I’ve experienced a pretty amazing recovery from a long series of mild TBIs and I feel this intense drive to pass on what I’ve learned.

It’s worked for me. I need to help others, as well.

And I need to do it on a much larger scale than I have been. So, I’m going to put some thought into how to do that.

If you have any suggestions, let me know.

And that’s all for now.

Getting my balance back — and getting to a stopping place

Well, that was exciting… The summer (thank heavens) is over, and now I can get my life back.

I don’t do well in the summertime. It’s a shame, because everybody else seems to have such a great time with it, running around, doing so much, getting suntans and extra exercise.

I, on the other hand, am not a fan. There are too many hours of sunlight in the day. And the days are hot… wet… uncomfortable in general. I’m sensitive to light and smells and noise, and summertime is full of all of the above. Not much fun.

I also have trouble sleeping in the heat. Keeping the A/C on in my bedroom (and all through the house, for that matter) is a constant source of stress with the noise. When I’m tired, I’m more sensitive to sound, so a moderately noisy air conditioner sounds like a massive fan in an airplane hangar. And that doesn’t help me sleep.

If I can’t sleep, I become more irritable. Volatile. Raging. It’s a problem. I’m not proud of how I’ve gone off the rails a few times, this summer. Between the work stress and summer stress… it’s not good.

I’ve been keeping really busy with work at my day job (sad face) and my own projects (happy face). It’s taken my mind off many of my troubles, but it’s also tired me out. Again, the fatigue business. And that leads to me drinking too much coffee… which leads to more headaches, difficulty sleeping… the same old vicious self-perpetuating cycle.

But now summer is over. Thank Heavens. And I can settle in for the next three months of enjoyment. I love fall. I love winter. I love spring. And now I get to take a break from summer.

I’m also giving myself a break from some of the Massive Undertakings I launched over the summertime. I came up with some pretty awesome plans that I’m convinced could be Very Big Indeed. The thing is, I really don’t have the capacity to follow through on all of them. I really bit off more than I can chew, so to speak, and that’s been dragging me down. I need to pick and choose what I’ll work on… and let the other stuff go.

But it’s all for the best, because as I narrow down my activities (e.g., writing and creating great content that I can license to others, versus running an entire company based on my ideas), I am operating from an understanding how a larger company would — and could — use my content to build their business.

I’m learning about the larger context for my writing, and that’s good. It’s very good indeed.

So, yes, sometimes I need to stop, in order to go. And learning to recognize my limitations and accommodate them is the first step towards being able to make some real progress.

It’s all a process.

Onward…!

Changing plans and shifting priorities

I love my routines. They’ve saved my s$$ over the past 12 years. They helped me retrain my body and brain to be a heck of a lot more functional than they were in 2006. And when it comes to TBI recover, routine and repetition are my friends.

Seriously, they’re like the secret weapon against the disruptions of TBI. Just figuring out how to do things exactly the same way, over and over, till that way become ingrained and you don’t have to think about it anymore… it’s magic. And it does so much to rebuild and solidify the new connections that replace the ones that got frayed and pulled to pieces in the brain injury itself.

Every now and then, it’s good to change things up, though.

That’s where I am, now. I’ve done a lot of hard thinking, over the past weeks and months, and I realize I need to have a different focus in my daily life. I need to spend a lot less time focusing on my career and professional prospects, and spend a lot more time focusing on my health and quality of life.

I’m not gonna lie — I really had to double down on my work situations, over the past years. I was in a downward spiral of sorts, in one overly challenging job after another, working in very hostile conditions that eroded my physical and mental health. And the past 3-1/2 years have also been a real challenge, in some ways. The thing that’s made it the most challenging is that I got caught up in ideas about advancing, getting promoted, moving up in the world. And that sucked me into a vortex of caring about what other people thought of me, what other people said about me, what other people did to me at work.

And that wasn’t a good use of time. Because here I am, years later, no further along on my professional path (even set back, compared to where I was before), and just looking back at a whole lot of frustration and dead-ends.

Don’t get me wrong. I’m highly ambitious. I’m driven. That’s for sure. But at some point, being ambitious according to someone else’s rules is just a bad idea for me. I need to be ambitious according to my own rules. I need to drive towards things that matter to me — having decent relationships with people, doing my best work, learning and growing as I go — rather than getting caught up in other people’s power games.

Somehow, those games never work out in my favor. I just get played.

So, I’m pretty much over that. Time to focus on other priorities. Time to funnel my energy into things that are going to build me up, not tear me down, and pay off in the short- and long-term, when it comes to just doing a decent job.

Heck, I’m not even sure I want to get promoted, anyway, considering the kinds of people who are climbing to the top, these days. It seems like a much better use of my time to focus on my mental and physical health… learning interesting things and applying them to my life… sharing what I know…. and just having the best life possible. So long as I make enough money to support myself and I have the time and opportunity to do something truly useful with my life, that’s what matters.

And that’s where my head is at today.

Ha… we’ll see how I’m feeling tomorrow… or next week… 😉

Adding back coffee – a little at a time.

I’ve been “off” coffee for a couple of years now.

Well, not entirely off, but severely curtailed. I went from drinking 3-4 cups a day (starting with two big cups in the morning) to barely one cup a day.

I’d start with 1/3 cup of really strong coffee, and then I’d have another small cup of strong coffee in the afternoon — preferably no later than 2 p.m., because if I drank it later, it would throw off my sleep schedule, and then I couldn’t get to sleep.

And in between, I’d eat chocolate to keep myself going. Because… chocolate. Caffeine. Sugar. Other tasty anti-oxidants in there to pump up my flagging energy.

But I had to give it up. Chocolate. Especially coffee.

What would make me do such a thing as give up my regular flow of dark and lovely caffeine? Well, all those cups were contributing to migraines — constant headaches that rarely went away. I had a non-stop headache, it seemed, for years. And I didn’t even realize it could be any other way. I figured it was just how my life was going to be, for now and evermore.

Untrue.

When I was told by a neurologist that caffeine (which includes chocolate) can actually trigger migraines, it amazed me. Here, I’d thought they actually reduced headaches. That’s what I’d been told, anyway. But the science is there — with some kinds of migraines, caffeine can actually make things worse. And discontinuing can help.

That’s what happened with me.

But lately, I’ve been reintroducing a little more caffeine (and occasional chocolate) into my days, without too much adverse effect. I’ve been having slight headaches, but nowhere near the intense ones that used to be constant with me. And since I notice them more, now, than when they were non-stop, those headaches are a good signpost for when (and how) I need to make different choices and do things differently.

Just the other day, someone had left some candy on the counter near the coffee maker at work. It was a kind I used to really love. Couldn’t get enough of it. I was able to walk past both the coffee maker and the candy all morning, but in the afternoon, as I was making my 1:30 p.m. 1/2 cup of espresso, I nabbed a few pieces and ate them slowly.

Sweet. On so many levels.

And then I drank my 1/2 cup of coffee. And I had another 1/2 cup a few hours later. No immediate headache. At least, not that I could tell.

I’ve been drinking a little more coffee, nowadays… and while I have developed low-level headaches (I have one right now), they’re not so awful that I can’t function. I’m keeping an eye on it, but so far, so good.

And the other good news is that with my regular daily exercise and eating a really healthy diet, I have been able to get to sleep, even if I have a little caffeine after 2 p.m. Sometimes I’ll have some at 4:00, and I’ll still be able to get to sleep. I think it’s because I’m really actively living my life. I’m “all in”, each and every day, and I also usually finish up the day with stretching and relaxing before I go to sleep.

That last bit — stretching my back and legs before I tuck in for the night — has actually done me a world of good. If I don’t stretch, I often find myself waking up at 3 a.m. in pain, and I can’t get back to sleep.

So, stretching before sleep is really helpful. As is relaxing before I turn off the light. Just consciously relaxing makes a huge difference. Until I learned how to do it (it didn’t come naturally), life was a whole lot harder than it needed to be.

Well, it’s Friday, and that’s a good thing. I’ve got a full weekend ahead of me, and I’m working from home today to get myself geared up. Relax a little bit. Tie up loose ends from the week. And get ready for what’s next.

It’s all good.

Onward.

Looking back, looking ahead… and trying to get some sleep in the meantime

I have been meaning to get more sleep, during this vacation. I’m able to take naps in the afternoon, which is great. I just can’t seem to get to sleep at a decent hour (before 11:00 p.m.) Part of the problem is that I just don’t want to go to sleep earlier than 11:00. I’ve got an internal clock that tells me when it’s time to sleep, and it generally doesn’t kick in till 10:45 or so.

It’s a little nerve-wracking. But I do it to myself, putting all kinds of pressure on myself to go to sleep, when I’m not really feeling that tired. And then getting up at my regular time, which lately has been anywhere between 5 a.m. and 6:30 a.m. So, I’m not always getting a full 7.5 – 8 hours, like I need to. And then I wake up irritated, because I can’t sleep through.

It’s an ongoing problem, especially during this vacation.

Well, my life is structured very differently now than it is when I’m working. I’m still doing my morning exercise, which is crucial. I’m actually doing  better with it than usual — getting both my bike ride and the weight lifting done. I just don’t move enough during the day. I move more, when I’m at the office, because, well, I’m at the office. I have to go to meetings. I have to get my lunch on the ground floor. I have to make trips to the water cooler as well as the restroom. It gets me up and around, while being at home — where everything is within easy access and just a few steps away — keeps me sedentary. Heck, I can even work while sitting/lying on the sofa, which sounds great, but is a bit of an occupational hazard.

Anyway, it’s the end of the year, and I’m kind of out of sorts. Feeling like I’m drifting, cut loose from my moorings a bit… feeling like I fell asleep in a rowboat that was tied to a dock, and then I woke up finding myself drifting out in the ocean, with the dock in the distance. The thing is, although the distant docks look familiar, and that’s where I expected to wake up, I can also see other sights in the distance.

Cities I didn’t know existed before.

Distant piers and jetties that look every bit as interesting as what I’ve known before.

Busy industrial ports that hold mysteries within their iron fortresses

And secluded beaches to explore.

Different sorts of places where people live, work, and go about their business, which are both foreign and fascinating to me.

And lighthouses to guide me along the way.

Lights… sights… sounds… And a whole world of choices out there.

When I actually have some time to catch up with myself, I can see so many more possibilities. And it’s invigorating.

But it’s also a little depressing. Because I spend so much of my time in recovery mode, just trying to right myself in the very wrong world, that I don’t have as much time as I’d like to just kick back and relax into finding out What’s Next.

I look around me at my life… And I see so much more beyond my present situation. And I also see that the resources I have at my disposal are, well, limited. I’m not complaining. I’m just saying. I don’t have all the energy in the world, and I don’t have all the patience to match it. I want to cut to the chase and get on with my life, to the best of my ability. And after all these years of really working on my TBI recovery and firming up my Sense-Of-Self, I’m finally at a point where I have a reliable idea of how “I” am going to react and behave under certain circumstances.

That’s the biggest, hairiest, most dangerous part of life after TBI — losing your Sense-Of-Self. It erodes your self-confidence. It crushes your self-respect. It makes every situation into a danger-fraught series of surprises that threaten everything you care about. And then the real trauma of TBI sets in.

I really believe that the biggest trauma in mild traumatic brain injury comes after the injury itself. There’s a steady stream of “micro-traumas” which stress out our systems and add to the fight-flight biochemical load. And unless we learn how to manage our fight-flight overload and learn how to clear out the neurochemical gunk of all that ongoing stress, mild TBI continues to take its toll. It continues to haunt us, to tax us, to load us up with invisible burdens that nobody else understands, but which are very, very real.

If you really understand the physiology of trauma (and not a lot of people know about it, let alone understand and fully appreciate it), and you understand the profound change that even a “mild” TBI brings to your entire system, all of this makes sense. You know that the subtle changes to how your system works are disorienting and anxiety-producing. You know that the body’s mechanisms for protecting itself are working overtime post-TBI, and they’re kicking in, in the most unlikely of situations. You know that the overall effect builds up, and you know that it’s cumulative.

You also know that while the effects may show up as a psychological disorder, the underlying basis is a combination of mind and body — and the body bears the burden of it all.

The thing about this whole deal is, because the body is involved, it’s possible to work with the body to turn that sh*t around. Even if your mind feels like mush (I’ve been there), even if you can’t remember what you did, just a few hours before (I know the feeling well), even if you can’t get through your morning without a detailed checklist (the story of my life for years), the body can act as a gateway to recovery.

Regular exercise helps stabilize your system. Eating the right foods (and steering clear of the wrong ones) helps your metabolism stay stable and keeps you off the blood sugar roller-coaster. Getting enough sleep lets the brain “knit itself back together”, as well as clear out the gunk that builds up, just as a result of everyday living. Plus, learning to regulate your heart rate and your blood pressure can train your overall system to get back to a stable state, even if everything feels like it’s falling apart around you.

I’m sipping the last little bit of my half-cup of coffee, as I write this. The snow from last night is giving way to freezing rain, which will fall until midday, when the temperatures start to rise, and regular rain falls. There’s always a chance that the ice buildup will take out our power, and that’s no fun. But I have wood for a fire in the fireplace, and we’ve been keeping the house pretty warm, so we’ll have some residual heat to see us through. In the past, we’ve had some pretty hair-raising experiences with losing power, and I don’t look forward to repeating them.

But I know a lot more now about keeping my physical system stable, and I’m in a much better place, mentally, than I’ve been in past years. So, I’m at much less risk than before. And knowing that relieves the pressure and also reduces the risk of my “losing it” even moreso. And that’s good. It’s awesome.

So, where was I… I’m kind of meandering, this morning, as I try to get my bearings. I’m looking back at the last year, wondering if all the effort really paid off the way I wanted it to. I’m not sure it has. Some things I started have kind of stalled. And other things I wanted to continue with have floundered, as well. In some ways, I’ve been as diligent as ever. In my day job, for example, I’ve been invested and involved in ways that have actually paid off. When I think of all the other jobs I screwed up since 2004 (and even before that), it’s kind of depressing.

So, I won’t think about them. I’ll focus on the good.

And as I look forward to my future, I see a much simpler — but much more do-able — path ahead. I’ve let go of a lot of old activities that were busy-work I picked up for the sake of pumping up my tonic arousal (the state of wakefulness in your brain) and getting my system turned “ON”. I had a handful of websites I wanted to start, a number of business ventures that seemed promising, apps I wanted to build, and novels I wanted to write. That extended experiment in busy-ness went on for 10 years or so, and it just didn’t work out, so I’ve now narrowed my focus to a few particular activities, which will actually lead somewhere.

Heck, they’ve already started to pay off. And taking the pressure off myself to go find another job… yeah, I’ve let that one go. Yes, traveling for work every few months really takes it out of me, but there’s no guarantee the next job won’t be just as much of a pain in the ass. Plus, it’s too stressful to go changing jobs every few years. I used to thrive on that experience, but now it’s just a pain in the ass. I need to look for the good in things and tweak the things that I’ve got going on… not ditch them and go looking for something better, somewhere else.

So, I guess I’ll wrap up my ramble. My morning is in free-flow, so I’m just letting my mind wander as it will, for the time being. I got my grocery shopping done yesterday. I got my meals for today prepared yesterday, too. I can’t go out and do anything, because the roads are bad. There’s no need to go anywhere, anyway. I’ll just hang out for the day… drift… make a fire, perhaps, and catch up on my reading.

And write a bit more. Because I can. I’ve got the time and the opportunity. So, yeah…

Onward.

What we lose after TBI… and what we can get back

I’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.