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.

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… 😉

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.

Emotional/Behavioural Changes after Brain Injury – Part 1

Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.

The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.

Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

Now you can help me to help others with TBI

Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

After TBI or concussion – slower brain, craving stress

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.

So, what does our brain do? It seeks out opportunities to come alive — to feel like itself again. WOO HOO! And for a little while, when we’re stressed out over our procrastinations, or our altercations with others, or our other poor decisions made in the heat of the moment, we actually do feel alive. We feel like ourselves.

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.

You can read more about this here at:

A Perilous Relief

Just something to keep in mind…

Discovering a new identity after brain injury – or creating one? – Part II

I decide who I am

I had to run out the door to work this morning, before I could “finish my thoughts” on Discovering a new identity after brain injury – or creating one?, so now I’ll continue…

So, after my fall in 2004, something happened to my old sense of being able to reinvent myself at will. I lost my flexibility. I lost my fluidity. I lost my “old” Self — the Self who knew there was more to me than I knew at the present time.

That change didn’t happen immediately. It was a gradual process… a slow erosion of who I was and who I knew myself to be… as I had one instance after another of feeling and thinking and behaving not only different from how I wanted to feel and think and behave, but how I intended and expected my Self to be.  Listening to myself fly off the handle over little things… Watching myself get so belligerent and argumentative over stuff that never used to bother me… Seeing my whole way of relating to others fall apart — getting all jumpy and antsy and aggressive — and never being able to really predict how I would be, on any given day…

One experience after another happened, to make me doubt and question who I was, and take me farther and farther from my Self. Some people turn to religion or spirituality to find their way back themselves again. For me, any religious or spiritual feeling was gone, baby, gone. I had always felt a close connection to God, Spirit, Creator, Higher Power (whatever you may call it), but after my fall in 2004, I just couldn’t be bothered. People around me would want to pray and meditate, and all I could do, was roll my eyes and get irritated.

That all takes a toll. Especially when your behavior is nothing like what you want it to be. And how I was, did not resemble me in the least. I found myself doing and saying things I regretted even before I started — but I was helpless to stop it. The worst part was, I didn’t feel comfortable talking to anyone about it, because it was so terribly painful for me, and I would start to cry, when I thought or talked about it. I was deeply, deeply ashamed of my behavior. I knew better. Why couldn’t I do better?

I just pulled away from people, over several years after my fall in 2004. Only after I started regularly seeing a neuropsychologist in 2008, did things start to turn around. They got me reoriented in the right direction, and after a few years, I started to be responsible again. I got my act together, bit by bit, and things really improved for me, all across the board.

But there was still a missing piece of it all, a missing part of me that made me feel like a stranger in my own skin — uncomfortable with myself, not feeling like I recognized myself. I tried discussing it with my neuropsych, but they didn’t seem to realize the dept of my distress — maybe because I kept it wrapped so tightly under this veneer of capability, that they never could have known how wrecked I felt inside.

In any case, they never directly addressed my dissolving sense of Self with me. They were more focused on how I perceived myself in relation to myself and to others. Maybe they knew all the time that I had to reconstruct a sense of who I was, in order to fully recover. Or maybe they just didn’t seem to think my identity crisis was that big of a deal.

In any case, the net result of it all, was that I ended up spending a whole lot of time coming up with ways that I could make sense of my own life in my own way. Keeping this blog has been a big piece of it, as well as finding new things that got me interested in my life again — things that I felt were brand new discoveries. Even if I had “discovered” them before (sometimes several times), the fact that they felt new to me, kept me going. It kept me curious. It kept me looking and searching. It kept me engaged in my life.

And it gave me the feeling that I wasn’t just rediscovering my old self, but I was actively creating a new one. As I reduced the stress in my life, I found myself able to enjoy things again. I didn’t worry about whether those things “mattered” or not — or whether I was really fully appreciating what they were about. I didn’t care if I didn’t follow everything in the scientific papers I was reading. That wasn’t the point. The point was about reading something that intrigued me — even if I didn’t actually understand 100% what was being discussed.

I also found myself able to learn new things, albeit slowly. I taught myself to juggle, and that gave me a huge confidence boost. I figured, if other people could learn it, why not me?

I got involved in different projects and different undertakings, and I even did a live presentation that was broadcast to a special interest group. I never went back to the group after that. The point was that I did my presentation to begin with. I made art. I took photos. I did volunteer work. I created picture books and animations about topics that intrigued me. Just for the sake of doing it.

And all along, when I felt like I was in uncharted waters or things were unfamiliar to me, I treated it all like a learning experience. A series of teachable moments. A time to not only discover parts of myself I had never noticed before, but to create a new understanding of myself that was bigger than the rigid ideas I had about who I was and what was possible for me and my life.

At some point, I realized that the more time I spent trying to recreate the lost parts of myself from before, the less time I was spending on creating new experiences and discovering new parts of myself. And I also realized that the more I focused on the new and interesting developments in my life, the less I was bothered by the troublesome new parts.

When I was totally focused on something fascinating in front of me, the light and sound sensitivities didn’t make me nuts. When I was caught up in doing something that mesmerized me, it brought my brain to life, and I felt like I could think again. When I was actively learning new things, I had a sense of hope that drowned out all the bad feelings from meltdowns and blowups that really wrecked my peace of mind.

I didn’t just want to restore what I’d lost — like filling up divots in a golf course. I wanted to go explore a whole new part of the countryside, far away from those mucked up 18 holes.

In a very real way, my restored Sense of Self is a result of things I did to recreate it — to have a new and bigger understanding of myself in the context of my life. Over the years, I’ve developed some really helpful techniques to help me just stay chill and calm, so I can pay attention to the things that really matter in my life — the things that I can control and manage. I find that as long as I take care of myself and I keep showing up, my recovery progresses. There are always set-backs, but eventually things come together, and I’m stronger than before. And I find new ways to redefine myself and my place in the world.

So, I’m going to stop writing now and go read some more works about identity after TBI. It turns out, there’s a ton of stuff that’s been written, and some of it is very good. I find people talking about people “rediscovering” their identity after TBI, regaining a sense of who they are, and so forth. For me, creating a bigger and more durable identity is so important — it’s not just about discovery, it’s about actively taking a role in re-making yourself in the ways you choose.

I’ve always done this. That’s what I need to remember. Ever since I was a little kid, and I got moved around a lot, shuffled from one school to the next, from one peer group to the next. I’ve always had to adjust and redefine myself. And adapting after TBI is no exception to that rule. The stakes are higher now, and I have no real safety net, so it’s even more important that I take responsibility for my Sense Of Self.

I hope what I’ve learned can help others, as well.

We’ll see…

 

Finding my way through the country I used to recognize

Sometimes it all just goes away

Yesterday was a good day. I was riding high on the boost I got from work, and the day turned out pretty cool.

The more I think about the compliment I got at work on Friday, the more it means to me. It’s really sinking in, and I’m “letting it in” (as my spouse urges me to do). I don’t like to get into patting myself on the back too much – no sooner do I get really comfortable, than the rug gets pulled out from under me, and I have to work my way back to a place that’s good again.

Over the past two days, I’ve been looking back at the way my life has developed — how it was in the days and weeks and months and several years after my TBI in 2004… and how I’ve re-ordered it in the meantime. I have made huge progress — thanks to getting regular support from folks who don’t treat me like there’s something wrong with me (it’s important to have some of them in my life, because so many people seem to think I’m not quite “right”), as well as constant WORK.

It’s been a long, long road back, through the disaster area that was my life for so many years. Like the tsunami in Japan that devastated so many lives in cities and villages, TBI tore through my life and trashed a lot that used to be reliable.

It sounds weird to me, thinking about how devastating the damage was, relative to my injury. I had a “mild” TBI — a concussion. I wasn’t knocked out more than a second or so. I didn’t end up in the hospital, hooked up to tubes and machines. I wasn’t in a coma. I didn’t have to relearn to walk and talk. But within a few years after my fall, my life looked like the picture of Japan above.

And at the time I realized just how bad things were getting, I thought the good stuff was gone for good. I thought I was gone for good. I couldn’t imagine ever coming back.

But apparently I have.

It’s been a balancing act — making concessions here and there, and pushing forward with things that meant a lot to me. There are certain things I had to let go, and other things that have come back to me.

Three things that I’ve had to change are:

• How quickly I do things
• My sleep frequency and patterns
• How I live my everyday life

One thing I can’t do anymore is the “rush” thing. It’s confusing and exhausting, and I hate it with every fiber of my being. I used to get a charge out of it — a real rush. But not anymore. Now it just screws everything up. I’ve had to slow down a lot — for me, that is. Compared to others, I’m not going that much more slowly, but for me, it feels like I’m moving at a glacially slow pace, and it makes me nuts. But I have to do it, so I do.

Another thing that I’ve had to let go of, is staying up till all hours of the night/morning and then being able to get up the next day and go to work and be fine with it. That’s gone-baby-gone. If I don’t get at least 7 hours the night before, I struggle all day. I might not feel tired, but I can definitely tell I’m impaired. It’s just not worth it to me, to get all ragged around the edges and have to push through. Adrenaline is all very well and good, but it’s no substitute for a good night’s sleep.

I also need to actively manage my life with notes and reminders. If I don’t set reminders and keep notes for myself, I lose track of a whole lot of things I need to not lose track of. It’s pretty bad — especially when I’m tired. Sometimes I “rebel” and try to wing it – and then I learn again what a bad idea that really is. Keeping notes and reminders lets me focus on what’s in front of me, without needing to keep the reminders and to-do items in the back of my mind all the time.

I have to do a lot more preparation, too, than I used to. I need to preview my days and figure out what I’m going to be doing, and how. I need to actively manage my entire day, making sure I’m doing things at the right times and in the right sequence. If I don’t, it spells trouble.

Making accommodations for how I’ve become isn’t much fun. It’s a little depressing, to tell the truth. I want things to be like they used to be. I want my brain to be like it used to be.

But that’s not going to happen. Not like I think it’s going to be, anyway.

Actually, though, the accommodations I’m making for my brain are helping me in many unexpected ways.

It’s actually good practice to take things more slowly than I did before. This is not only because of my brain, but because of the greater complexity of my life, compared to how it used to be. Ten years ago, I wasn’t juggling my own logistical issues with the intense health issues my spouse has, along with being the only wage-earner in the house. Both of us were working and earning okay money, and we were both self-sufficient. Then the sh*t hit the fan, and I now have to manage a lot more for both of us, because my spouse just isn’t as capable as they used to be.

On top of that, my job is now more managerial than before. I’m managing projects and leading teams, so I have to factor in a lot more in the course of each day — and this spans not only this country, with coworkers in multiple time zones, but also overseas with colleagues in Asia and Europe to accommodate. Work has gotten way more complicated than it was, just a decade ago, and the nature of my work has changed as well. So, going fast and rushing to completion is not an option anymore. I need to consider a lot of things, including time zones and cultural differences — and also not rush myself and others in the process.

In all of this, sleep is critical.  And my relationship to it has changed a lot. I don’t have a lot of downtime, each day, and I’m exhausted by the end of it all. It’s been that way for a long time, actually — and it got that much more acute after my last TBI. I had a lot of trouble with insomnia and sleep disturbances. Just getting myself to bed has been a challenge, over the years. But where I used to really fight it, now sleep feels like a little vacation to me, when I can just let it all go — disappear into a different world. It is the ONE escape I have, so I value it like never before. I don’t drink or smoke or eat a lot of junk food, and my vices are necessarily few and far between (they can really derail me). Sleep is the one luxury I have, I’ve realized, and since coming to that conclusion, it’s become easier for me to let it all go and get some rest.

As for my lists and reminders, they keep me organized. I’m so friggin’ organized (out of necessity) at work, that my calendar is a model for others. I spend a lot of time at work, moving dates around and trying to fit things together in a big-ass choreographed production. In fact, that’s probably the best way I can think about it — as an exercise in choreography.

Getting people dancing… moving together… and making a beautiful production out of it. It’s funny — watching dance irritates the crap out of me. Maybe it moves too fast for my brain, or it takes me too long to catch up with it. But I absolutely love still pictures of dancers in motion. The pictures of mastery in motion really inspire me — if they can do that (and how do they do that?!) then what isn’t possible for people to do?

Still pictures of dancers — especially black and white photos of modern dancers in motion — really inspire me. And my job as a project manager is to inspire people do to the equivalent in their own work, so that our projects come together in a unified performance.

And you know what’s interesting? In the process of accommodating my limitations, I’ve actually been able to extend what’s possible for me, above and beyond what I’ve done in the past. In some ways, losing my basic functionality at one level, forced me to learn to live at a completely different one.

If I hadn’t gotten hurt and gone downhill as badly as I had, would I have been forced to “bump it up” the way I have? I’m not sure. Other keys have definitely been getting the right information and also getting some support, but ultimately, it was the total unworkability of my past ways of doing things in my emerging life, that forced me to dig deeper and see what else was there.

Anyway, this post is going on way too long. The bottom line is, TBI trashed my life, but I have gotten to a point where it’s no longer a total wasteland without any hope for the future. I have a ton of hope now, and that’s for a good reason — because things are turning around in tangible, daily ways. I have something to show for all my work, and it’s good.

It’s really, really good.

Onward.