Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

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Well, that was interesting… good times, bad times, good lessons

winter frost tree downThis is the story of my last three days. Snowstorm. Trees down. Wires down. Not much going on, other than winter. Storms. Electricity out. No heat, no running water, no television, not much connection with the rest of the world.

Living on battery power, using the mobile phone to contact the rest of the world. Staying close to the fireplace, keeping the fire going all night long, finding different ways to get meals and keep occupied. Waiting for the power to be restored. Hearing one thing, then another, then another.

Waiting, just waiting. Watching the snow fall. Moving it off the driveway. Off the roof. Off the back deck and stairs. Lots of snow. Half a meter’s worth. 18″ worth. Heavy, thick, packed snow.

And now I feel it. In my back, my legs, my arms, my shoulders. Bruises all over my legs, where I slammed against the snowblower. Cold. It was cold. And the all-over ache that comes after hours and hours of being tensed against the cold. Countless trips up and down the stairs to get more wood for the fire.

All in all, it wasn’t terrible, being out of power for two days. Longer than that, and it would have been a problem. We would have gone to a hotel, because my spouse can’t afford to get sick, and they’re more susceptible to cold than I am. We came this close to going to a hotel, then decided against it — the place we called said there were a lot of families checking in, because they lost power, too. And having a lot of kids running and screaming (’cause that’s what kids do, when they’re cooped up, let’s face it)… well, that wasn’t the most restful option.

Better to stay in our own space and try our best to stay warm and dry. Wait it out. Gather around the fire. Rest. Wrap ourselves in blankets and relax. Wait it out. Just wait.

And we did. Power was restored 3 hours sooner than they said it would be, and that was fine. In the bargain, I scored some major points at work for continuing on through with my work, despite having no electricity or heat or running water. I managed to logon to my work by connecting through my phone and then sitting in my running car to keep the power going to it, so I could complete some must-do tasks.

And now I have a reputation for being that much more of a can-do person, with total commitment to getting the job done. So, something useful came of it. Which is fine.

So it goes. I handled this storm considerably better than I handled others in the past. I kept my cool. I kept focused. I wasn’t a total jerk to my spouse. And I came out of it ahead of the game. I’m wiped out and would love to sleep for 12 hours, but I’m also keenly aware of how much good it did me to really move. And not spend all my time in front of a computer, like I’ve been doing for the last however many years.

It was good to have the enforced break. Away from the constant hum of machines, away from the low-level buzz of non-stop electricity. Listening to the wind. Getting out in the snow. Just living a very basic life, and being profoundly grateful for everything I have.

Now it’s time to go get some supper. The refrigerator isn’t smelling all that great. It stayed cold, but not cold enough. So, off I go to replenish it. And get something really good for dinner tonight. Something filling, substantial… and hot.

Just as it should be.

Onward.

Changing plans and shifting priorities

tree growing above a rainbowI 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… 😉

Movement is not optional – it’s gotta happen

pineapple splashing into waterMy left shoulder is still killing me. But I know how to fix it — for the near future and in the coming weeks and months:

Movement. Keeping mobile. Not letting myself sit still for hours and hours, like I have been for the past several weeks.

Or maybe it’s been months. I’ve had a lot going on, lately, and 90% of it has been in front of a computer. Yes, I’ve gotten a lot done, but it’s come at a price.

So, it’s time to change that up. Move my entire body (not just my hands). Get up and walk around the room, while I’m on the phone. Get my morning exercise AND build in additional movement (especially weight-bearing movement) throughout the day. Don’t just sit still for hours on end. That’s kicking my butt.

I’ve got a plan. Now, I’m going to get up and walk around a bit.

Because that’s gonna keep me knit together in one piece.

Onward.

 

Doing what has to be done — and loving it

traffic cone standing on a muddy patch of groundWell, I’m off to an interesting start, this morning. I got a good night’s sleep, then I got myself out of bed at a decent time and got my exercise. Did some stretching. Did some lifting. Rode the exercise bike for a little longer than usual. I gained a few pounds over the past couple of weeks of intense work-eat-sleep-work cycles, and I’m not feeling that great, as a result.

Sluggish, stiff, the opposite of limber. And weak. That’s how I’m feeling, these days.

So, I’m doing something about it. And it’s not very pleasant, I have to say. It’s downright painful, in fact. Getting myself back on a regular routine, after going down the rabbit hole of overwork isn’t something my body is very happy about. It wants to languish. It wants to just keep eating and sleeping and working. But I can’t give in to that. Because that leads to more of what I’ve got now — weakness, chronic pain, and trouble doing basic things like brushing my teeth with coordination and putting my socks and shoes on easily. When my body isn’t working well, those things — and more — fall apart.

And I can’t let that happen.

Some days, it feels like a constant struggle to just maintain a normal pace. Some days, it is a struggle to do that. But struggle just comes with the territory in my life. Nothing important happens on its own, in my experience, and I tend to have different ideas about what should happen, compared to the rest of the world. So, to do things like have some peace, I have to structure my  life very differently from most people.

I’m not particularly interested in living in a steady stream of busy-work and mindless distractions to take my mind off the poor choices I’ve made. I’d rather just not make those poor choices, to begin with. So, that means I opt out of so many of the activities that others take for granted. I keep my social media interactions to a fraction of what most people have — including Facebook. I try not to get sucked into the current news cycles, including all the in-depth “analysis” (which just boils down to propaganda, from what I can see). I don’t go out to movies or concerts. I don’t drink alcohol or smoke, and I avoid bars and clubs when I can. I take time to cook decent meals and I keep my television viewing to a minimum, watching just a few shows — many of them on-demand, rather than clicking around the channels looking for something interesting.

And weekends I keep as low-key as possible. Every now and then, I’ll go out and do something, or I’ll launch into a flurry of errands and projects, but I try to avoid the rest of the world as much as possible on my weekends. I have to deal with everyone the rest of the week, so I give myself a break on Saturdays and Sundays.

Most people I know would hate living like I live. They’d find it boring. Or they’d get nervous in their own company. They wouldn’t like to hang around the house with only their own thoughts (and some interesting reading) to keep them occupied. They’d probably go out looking for something to take their mind off all that.

But for me, this is what I have to do to keep myself stabilized — and sane. Having these two days to decompress is not optional. Sure, sometimes I’ll venture out to spend time with friends, but the more active I am on a Saturday or Sunday, the more low-key my other day is. And the downtime is bliss. Sheer bliss. And I’m not sure I could live without it.

I was talking about this with a friend last night — somebody I haven’t seen in quite some time. They were asking why I don’t do as much as I used to, and I explained that keeping up the 9-to-5 work schedule, and then doing all the extra activities I used to do with my spouse, just got to be too much. It wore me out, and I needed some downtime. And they got it. Because over the past couple of years, they’ve been divesting themself of a lot of the “trappings” of a settled life. Rather than keeping up a house and paying a mortgage, they’re traveling around the country, house-sitting for friends for a month at a time, and then moving on to the next thing. Some people cringe at the idea, but it was working well for them.

It’s what they have to do, at this point in time. And it’s working. And they love it. Just like I’m keeping my life low-key on the weekends, cutting back on online social media stuff, and following the news a LOT less than I used to, while the rest of the world goes crazy around me.

To some, these would seem like sacrifices. And in fact, 15 years ago, before my 2004 mTBI, I would have really fought against a lot of these choices. But over time, I’ve realized that this is really the best way I can possibly live my life, and enjoy myself while I’m at it.

I’ve had a really busy couple of weeks, so I’m going to rest as much as possible, today. Do some reading. Think about stuff. Or just stay in bed. We’ll see what happens. In any case, it’s all good.

The rest of the world will be there when I resurface in another 24 hours.

Adding back coffee – a little at a time.

Kim-Sutton-Positive-Productivity-Coffee-and-ComputerI’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.

Christmas and Change

tree covered in snow with forest in distanceI hope everyone who celebrated yesterday had a really great Christmas. For many of us, it’s a lonely time, if we can’t be with the ones we love — or the ones we love don’t love us back, or we’re just so misunderstood by the people we need to understand us the best.

I had a rough morning, with some upset that seemed to come out of nowhere. I just felt so terrible. But after I got moving, taking care of Christmas day things, I felt better. It helps if I get moving. If I “sit” in my misery, it just amplifies it.

So, it’s best to not sit in it. Have faith that my life is worthwhile, and just keep going. Get the focus off me, pay attention to others. Get moving. In a positive direction.

And the day turned out fine.  Between cooking and getting the house in order, there was a lot of activity. The good thing was, it completely wore me out, and I fell asleep on the couch for an hour before going to bed. I woke up at 2 a.m. drenched in sweat (even though I had the heat turned down), and I had to change my sheets, they were so wet. But then I fell back into bed and actually slept till 7 a.m., which is a recent record for me.

So, it’s all good. And since I don’t need to be at work for another week, I’m seeing all kinds of opportunity for the next 7 days. Opportunity to get my home in order, organize, clean up, take care of the chores that I typically put off, because I’m so tired at the end of every day.

I’ve already done a lot of organizing of my home office, which feels great. It’s more than just a holding pen for my files and books, now. It’s an actual work space, which I need. I also need to straighten up the living room, after the Christmas gift-opening extravaganza. Every year, my spouse and I get each other “more gifts than we need”, but in truth, this time of year is just about the only time of the year we splurge on luxuries like soft “house socks” with anti-slip nubs on the soles, new winter caps, and high-tech miniature flashlights. All of these things we can use, but they’re not necessities, so we usually go without. Until Christmas rolls around and we can justify getting them. We don’t get a lot of jewelry and luxury items, like cars and bikes and whatnot. Or maybe our definition of “luxury” is different.

Anyway, yesterday was a busy day, and it included some visits from the neighbors, who came bearing cookies. One of my neighbors needed extra driveway space for their visiting family, so they “borrowed” my driveway. And my other neighbor is moving in the spring, which is a shame, because they’ve been a great neighbor who’s really been there for us over the years. I often help them shovel out after snowstorms, and I watch their cat while they’re traveling. They keep an eye on our house while we’re out of town, and they just keep us connected with the rest of the world. That’s a loss. And when I think about it, I get a little emotional.

But change is constant. There we have it. And the time off work is giving me a chance to think through some of the changes that will probably be coming in the next few decades. Basically, I live in a house that is extremely non-accessible. It’s up on a hill that you have to walk up steps to get to. There’s literally no way to get in and out of the house without walking up stairs. And while that’s fine now, in 10 years or so, my spouse might not be able to do that.

So, what to do? Well, there’s a point of access through the garage. I do need to get a garage door opener installed for one of the garage doors. And the door from the garage to the basement will need to be widened. Then there are the basement stairs, which aren’t sturdy enough for one of those chair lift things. But I think an elevator will actually work. The stairwells are over top each other, which makes me think an elevator shaft will fit well in that space.

Of course, there’s the question of power. If the power goes out, we’ll both be stuck, since there won’t be stairs going to the top floor. So, maybe I  need to get one of those big-ass Tesla batteries that will power a whole house. And get solar panels on the roof.

All of this sounds really expensive. Almost to the point where it could be cheaper to tear down the existing house (which has a bunch of structural issues, including cracks in the garage floor, sagging floors, and some rafters that aren’t 100% good. The more I think about it, the more I’d like to just tear down this house and build another version that makes more sense. Or move to another house… Except that we love this location, we love the view, we love the little piece of land we’ve got, and we really want to stay.

Then again, it might make more sense to just convert the downstairs half-bath into a full bath and set up my spouse with their own bedroom downstairs… Not bother with the elevator, which will seriously alter the nature of the house (and affect resale prospects), and keep things simple. If we expand the deck and add on to the back of the house just a little bit, it could work. It could work really nicely.

I just have to come up with money to do all this, which puts the horizon for doing this in the far distance. But that gives me time to think it all through and come up with different options. It could work. I just have to sort it all out.

But I’m sure I will. It’s just fun to have the time to think about all this stuff and not be rushed by Things I Have To Do For Someone Else.

There’s not a huge amount of pressure to get everything done, right now, which is good. Because with me, these things take time to sort out. But eventually they get where they need to be.

And then I move on.

Change… yeah… change and Christmas.

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

rowboat at docks

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.

Pacing myself for Christmas

Christmas wrapping
The final push is on…

It’s Friday. I have the day off work. I still have to do some daily “housekeeping” tasks for work, but it’s not that big of a deal, because it doesn’t require that I pay attention at all. Just start a program at 6:30 a.m. and wait for it to finish a few hours later. I should probably fix it so that it kicks off by itself.

I’ll do that later today.

Yesterday was get-it-all-done-before-the-snow-flies day. We’re supposed to get a bunch of snow and rain today, which could get messy. It’s not the kind of weather you want to be driving in, so I won’t. My spouse and I spent yesterday afternoon and evening doing our last-minute shopping, and we got just about everything done. So, that’s good.

It wiped me out, but it was good. Now I just have a bunch of stuff to wrap. And that’s fine. Because I have three days to get that done — a big improvement over past years, when we couldn’t get ourselves in gear before the very last minute.

All that last-minute shopping of years gone by just boggles my mind. How did we do it? Chaotically and crabbily, as a matter of fact. And it pushed me to my limits, year after year. But Ye Olde attentional problems and executive function issues kept me/us from getting ahead of the game and preparing in a timely manner. We always needed the stress of last-minute pressure to put us over the finish line, and it took a toll, year after year.

Of course, that’s just how things were, so we never thought to do things differently. And it took a toll. Good grief, when I think about all the drama and yelling and frustration… and how my spouse and I just took that for granted… I’m glad things are different now.

Part of it is that we’ve both gotten older and more tired, so we don’t have the energy for all that whoop-de-doop. Who has the energy for squabbling? What does it accomplish, other than sharpening our sense of being “ON”?

Come to think of it, that was a huge draw for us. Getting all worked up over things was a great way to perk up the old tonic arousal and get the brain to think it’s awake. That “pump” from the drama literally made me feel like I was alive again… a better state of mind than the steady level of dullness that came after my concussion(s). So, getting all “drama’ed out” was a way for me to wake myself up and get myself feeling normal again.

That’s not a small thing. It’s a critical thing. It was central to my Sense-Of-Self, and while it did make me pretty tedious to deal with during the holidays, it nevertheless played a role in making me feel like myself again.

But eventually that got old. And I learned new ways to perk myself up. Like getting regular exercise, first thing in the morning. Like getting the crap food out of my system. Like finding things that really made me feel great and focusing on them… not the things that made me feel terrible and perked me up as a result.

It’s an ongoing process, of course, and I’m not perfect. I still have my moments. Heaven knows. But things are a heck of a lot better this year, than they’ve been in past years.

And this year really I’ll be ready for Christmas.

There’s a first time for everything.

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

woman standing with a leaf in front of her faceI’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.