Brain injury comes in a number of different “flavors”, but it affects us in very similar ways

Brain injury is a brain injury, and as much as we may say “each brain is different, each injury is different,” we still need to look at the ways that each kind of injury is similar to others. And the experiences we have can be quite similar.

Loneliness, isolation, confusion, not feeling like yourself, getting angry quickly, mood swings, and let’s not forget the bone-crushing fatigue and the embarrassment that comes from not being the person you used to be… They are all things brain injury survivors have in common, and it’s helpful to actually treat people accordingly.

I honestly don’t understand why more emphasis isn’t placed on the experience of brain injury. That’s what trips us up, quite frankly. That’s the thing that makes our recoveries so much harder — the experiences we have and the effects those experiences have on our selves, our Sense-of-Self.

Well, that’s why I’m here. To speak up for those of us who tend to get stuck in our post-BI experiences, and need to see there’s actually a way out… Because there is. There is always hope — even in the most dire cases. Nobody can tell me different. That’s just how we’re built — to amaze… to heal… to grow… to learn. And learn some more.

Here’s a quick summary of the different types of brain injury:

Acquired Brain Injury (ABI)

includes things like stroke and anoxic (being without oxygen) brain injury. Some consider traumatic brain injury to be an acquired brain injury, because it “is damage to the brain that was not present at birth and is non-progressive” (See The ABI Manual for more). Personally, I wouldn’t call it “non-progressive”, but everyone’s experience is different.

ABI Resources:

Stroke

happens either when a clot blocks blood flow in the brain (called “Ischemic” stroke) or a blood vessel pops and there’s a brain bleed (called “Hemorrhagic” stroke)

Stroke Resources

Traumatic Brain Injury (TBI)

is related to trauma to the brain that comes from a fall, an attack, a sports injury, or an accident.

TBI Resources:

Concussion

is what people often call a “mild” TBI. Concussions are sometimes considered less serious than traumatic brain injuries, and a lot of people consider a TBI that clears up after a while, to be a Concussion.

Concussion Resources:

 

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My last decent vacation in a good long time…

open book with a landscape scene in the pages
The way life goes, you never know how things will shape up. I’ve had so many hopes and dreams over the years, and so many times, I’ve been on the verge of really breaking through… then something happened. And that “something” was often a TBI.

I was just getting my act together in elementary school, finding my footing with my peers and getting involved in a special program for “gifted” kids and discovering what worked for me, when I got hit on the head and things changed. I became combative. Difficult. A behavior problem. So much for the gifted program. They showed me to the door on that one.

My family relocated, and I was finally figuring out how to interact with the people around me (who all talked with thick accents I could barely understand). Then I fell out of a tree and wrenched my neck. And I kept hitting my head while playing sports. Football. Soccer. Just playing outside. Hitting my head was routine. I can remember a number of really significant blows to my skull that disrupted my consciousness, but they happened against a backdrop of regular clunks on the head. It seemed like every time I got on my feet and started feeling like I had a grip on my life, I’d get hurt (again), and I’d be back at square one.

I eventually got out of my parents’ house and got on with my life. When I drank a lot, I fell down — a lot. I may have (probably) hit my head a bunch of times, but I don’t remember much from the 4-5 years after I left my parents’ home.  Those years that could have been some of my best (and in some ways, they were). They could have been years of exploration and learning and experience like no other, but instead they were mired in the muck of hangovers and all the confusion that comes from not knowing what happened the night before. A few scrapes with the law… being ostracized by my peers… some violent confrontations… making money by borderline means, just to get by… it was definitely an experience — that’s for sure. But it took me years to recover from the damage I did to myself.

After I was in the working world, driving to work each day, I got in a bunch of car accidents. They weren’t huge deals, mostly just fender-benders, but whiplash and getting clunked on the head didn’t help matters any. During years when most of my peers were getting on their feet, finding their way in the world, I was scrambling. Trying to catch up, after being set back. I got a job, then got hit by a speeding door-to-door salesman. I left that job without saying why. Just left one day and never went back. I relocated to a really great city, but just before moving, I got rear-ended and spent the next several months in a manic haze.

Years later, I had a pretty decent job with a lot of responsibility, then got tangled up in a 7-car pileup, and everything fell to pieces there, too. That worked out okay in the end, because I found a much better job and a completely different career track, but it did a number on my self-confidence, and it caused me to pass up a golden opportunity that my new manager laid at my feet (and begged me to take). I can only imagine how much more stable my life would be now, had I actually taken them up on it.

The last and most debilitating TBI was when I fell down a flight of stairs at the end of 2004. I was just 18 months away from having some investments mature, and if I’d been able to hang in there and keep up with my life, I could have repaired and paid off my house, gotten rid of my debt, and really solved a lot of logistical problems that are the kinds of things that only money will solve. None of that got solved. It all fell apart. And it’s taken me 12+ years go piece it all back together to just a semblance of how things once were.

So, what does this have to do with my current vacation (which is now drawing to a close)?

In the course of my life, I’ve never known just when everything would fall to sh*t. It’s partly me being oblivious, partly me not having a reliable crystal ball that lets me peer into the future. So, all those times when I just assumed I’d have time to do this, that, or the other thing… all those times when I thought I was set… all those times when I didn’t pay attention to what was Right In Front Of Me… in so many cases, they were the last hurrah for that part of my life. The last shred of self-confidence. The last vestiges of feeling competent. The last months of feeling like I could actually plan my future with certainty. The last weeks of being able to take certain things (like how my brain worked or how I’d react to experiences) for granted.

I didn’t savor those things when they happened, because I was too damn’ optimistic. Too oblivious to just how sh*tty life could get for me. Not experienced enough to realize that things could get That Much Harder for me in a moment’s time. I took them for granted. I didn’t wring every last bit of goodness out of them, while the goodness lasted. And now I just look back on a lot of wasted opportunities and chances I totally missed enjoying… all because I thought there would be another time that would be somehow better.

I don’t believe that anymore.

Especially not this morning.

From here on out, my vacations will probably be a lot more work than relaxation, a lot more frustrating than renewing, and a lot less worth it to me. But they’ll continue. Life goes on. Sh*t gets complicated. So it goes.

For today, I’m just going to enjoy myself. Because this might just be as good as it ever gets.

I have the next week OFF

beach with ocean and "relax" drawn in the sand
Soon…

I’m leaving for a week’s vacation today. I have a handful of errands to run before we can get on the road, and then we are heading out to a waterfront town that’s full of art galleries and novelties shops and all sorts of great restaurants. We have a few restaurants that we really like, but mostly we avoid the crowds and excitement, buy Mexican or Chinese takeout and head for the beach for our own waterfront dining. It’s the best way — sitting in the car right at the edge of the water, having a nice filling meal that doesn’t cost a million bucks.

It’s going to be nice to get away. It’ll give me time to think, time to relax. I realize that I’ve been stuck in limbo with my life for some time. There’s been all kinds of drama in my immediate and extended family for the past 15 years — actually, longer than that. More like 40 years. And it’s really dragged me down, watching everyone go through their problems — me included.

But now, here I am, at a place in my life where I just don’t feel like I have the time to fritter away on feeling terrible about things that I can just take care of. I’ve learned a whole lot about how to deal with my TBI issues, and I’ve made an amazing recovery. So why not enjoy it?

Why not, indeed? I feel like I’m at a point in my life where I’ve learned more than enough hard lessons, I’ve been through my make-or-break circumstances, and I’ve made it through. I’ve paid my dues. Now it’s time to just enjoy my membership.

It’s funny… I don’t tend to think of myself as that old. I’m really not. But I have been knockin’ around on this planet for over half a century, and I’m kind of over the whole newbie experience. I’m not a newbie. I’ve been around the block plenty of times. And it’s about time I just settled into living my life and enjoying it, instead of constantly pushing myself to “take it to the next level”.

Please. What next level? No matter how hard I work, no matter how hard I push, there will always be another level ahead of me. So, why not just settle in and get the most out of the levels I reach? I haven’t done nearly enough of that over the years. And while it does keep me sharp and invested in my life, it’s also depleting and drags me down.

Eh, whatever. I’m going on vacation. I’ll probably blog a bit while I’m there. Just relax into it, do some writing, have a good time, while I’m at it.

And now… it’s time for more errands, as I prep for my 7-day escape.

Onward.!

Picking up the pieces on my own weekend “island”

desert island with two palm trees surrounded by seaI’ve got a long weekend ahead of me. What shall I do with myself? Three days off, with no appointments, no obligations, no requirements… what a luxury this is.

It’s almost like going to my own desert island. My spouse wants to take it easy, too. They’ve been doing a lot, lately, with events every weekend, and some additional events in between. They lead community gatherings — drum circles, song circles, gatherings where people share meals and life lessons — and it’s a lot of work. I used to attend a lot of them, myself. But it got to be too much. I already have a full-time job and a handful of side projects that keep me more than busy.

I prefer it that way, actually. Keeping busy, keeping engaged, making things, coming up with new ideas… that’s what keeps me young. Feeling young, looking young, living young. It’s a challenge, at times, because fatigue gets me down, that whole brain fog thing sets in, I get angry and agitated, and everything feels like it’s melting around me… falling to pieces. Just falling away. And at those times I sometimes just don’t care about anything. Just don’t. Can’t be bothered.

I’m at the point now, where I’m fine with not being busy. I look back on how things have been in my life for the past however many decades — okay, let’s call it 34 years, since that’s how long I’ve been majority age and in control of my own life — all the time I’ve spent on my projects, doing and doing and doing some more… making things, exploring… all that…

What’s it been for?

What have I accomplished? What have I truly gotten done? I do all this work, and then what comes of it? Clearly, I’m not rich and famous. I’m doing okay with a house (mortgage) and a fairly reliable late model car (and car payment), but I have no financial safety net, I’m not entirely secure about my future, and I just feel like crap so much of the time.

Not that feeling like crap matters… It can’t matter, because then I’d never get anything done. If I only did the things I felt like doing, I’d be homeless. Being in pain, being tired, being confused, being overwhelmed… that’s the price I pay for what I have, and if I let it get to me and give in to it, then everything falls apart. Part of me wishes I could fall back on my diminished state as a reason not to move forward. To file for disability (not that I’d get it, because I obviously am capable of working). I’d love to just check out for a while. Decide what else I want to do…

Well, I have three days to chill, so I’ll do that. I actually have more like 3-1/2 days, because everybody’s going to be gone as of noon, today, making a run for it for the last long weekend hurrah till the holidays. And we all know the holidays are no simple walk in the park, so do they even count as time off?

It’s all relative, of course. And things may be changing with my job, since my group got moved to a different organization. We’ll see how that goes. In the meantime, I’m submitting my resume for other jobs, not expecting much, but also not chasing after things. It never works out, when I chase. Plus, it’s exhausting.

So, this week is really for chilling out and giving myself some room to breathe. I can go out for walks down the road. Or I can stay in bed and read. Or I can sit around and watch movies all afternoon. Or I can spend extra time exercising, since I’ll have the time to spend. My choice. Time to take the pressure off, and just BE.

I got almost 10 hours of sleep, last night. Nothing short of a miracle, considering how little sleep I’ve been getting lately. I plan to get even more this weekend.

Onward.

The adventure continues.

After #TBI – Don’t depend on your brain’s weak systems

hand holding pen, checking off lists on a checklist
Getting stuff done… one thing at a time.

From the Give Back summary of how to fix your brain… This is something I have to constantly remind myself. It’s a hard one, because I hate to think of my system as being weak — or weakened. But that’s exactly what’s happened. And the thinking systems that have been weakened have been permanently altered. So, I need to always keep this in mind. When I forget it, I suffer. And so does my work and my relationships. My whole life starts to go downhill.

3. Don’t depend on your brain’s weak systems for organizing and memory to manage your time and your activities.

  • Get your brain to use your full intelligence to plan your day thoughtfully, a day ahead of time, when you can think everything through well.

It’s practically impossible for me to do this a day ahead of time, because things can change so rapidly with me. From day to day, I don’t always know what’s “coming down the pike”. Stuff changes rapidly — plans change, weather changes, people change their minds about what they’re going to do.

But that doesn’t mean I can’t plan in other ways. The best way for me to do this is break it up — look at my next day plan on the afternoon / evening before… and then check in with myself first thing in the morning. And keep track of things throughout the course of each day. Track it.

  • Write that plan down on a schedule form so that you take no chances of forgetting what you need to do.

Scheduling things has become a lost cause, in general, because things are so unpredictable at work and at home. So, I have a standard list format that I use.

[ ] Thing I need to do

[ ] Really important thing I need to do (I use a yellow highligher)

[/] Thing I am in the process of doing or have started

[x] Thing I have done (I have a green marker to track the things I’ve completed)

–> [ ] Thing I needed to do today, but didn’t get to, so I need to do it tomorrow. (I use an orange marker to make it stand out)

I try to keep a running list of things that I “carry over” from one day to the next. I’ll copy my –>[ ] items onto lists for later days. That way, I can keep track of everything I need to complete.

  • Develop the habit of writing plans and following them, and soon you will be in total control of your time and your productivity.

I agree. The habit of writing out plans and following them (as best I can) has done wonders for my ability to get things done, as well as my self-confidence. I have a support system that works for me. And when I use it (which I admit is not consistent enough), it really helps offload a lot of the mental grunt work, to save my brain for more interesting and important (and challenging) things.

If there had to be one thing I’ve done that’s helped me get back to the level of functioning I’m at now, it’s developing lists and systems around lists, that let me do what needs to be done without having to think too much about how to do it all. Coming up with a ‘standard operating procedure’ for just about everything — from getting up in the morning and going to work, to taking down the Christmas decorations — has made me a whole lot more functional than I ever was, when I was just going with the flow or winging it.

Lists are my friend. They can be yours, too.

Onward.

1. Know that you have a new brain, one that can work well once it is reprogrammed.

hand holding magnifying glass over brain, which is made up of gearsOne of the things I really appreciate about the  Give Back Orlando materials is that they don’t sugar-coat TBI recovery, but they also don’t make it into a “accept your new normal” approach, where you have to resign yourself to everything being so much worse than before. The core message is that you can improve… provided you make some specific changes in how you live your life.

The first change is:

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.

When we’re very young, we come into the world with the capacity to create a whole lot of synapses — connections in the brain that carry information. Over time, our synapses are “pruned”, as our brain refines its ways of doing and understanding things. By the time we get past adolescence, a lot more connections have been pruned than we had, just 10 years earlier.

It’s been said that one of the things that “gets you” after TBI, is that you may have lost a bunch of the connections you really depended on… and that’s a loss.

But here’s the thing, see? If we have “neuroplasticity”, we can create new connections to take the place of the ones we’ve lost. That, to me, is the essence of TBI recovery.

Granted, there may be parts of the brain that are so damaged that there’s no repairing them by present means. Maybe sometime on down the line, but not right now. But the brain is an amazing thing, and we can create a lot more connections than people used to think we could. In fact, the old ways of understanding the brain — that you can’t repair it, if it’s injured… that only certain parts are used for specific activities… that damage is permanent — those old ways have been disproved.

It’s not true.

What IS true, is that with regular practice and the right approach, the brain can be “reconditioned” to perform at, near, or even better than levels you had before.

But you have to realize that change has to happen. You have to deliberately create those new synapses, those new connections, those new ways of your brain functioning. You can’t keep doing things the same way as before, over and over.

You have to realize you have a new brain.

And you have to keep reminding yourself of that, through the course of each day.

It’s like trying to run a Windows 10 program on Windows 3.1 (remember that? I do). It’s just not going to work. Not because Windows 3.1 was so much worse. It was good for what it did. It’s just that the “gears” work differently now.

And you have to accept that fact.

I’m not talking about accepting it because it’s a sad fact that life is going to be so much worse.

I AM talking about accepting it, so that your life can get so much better.

Big difference.

So, that first step is the best kind of acceptance of all.

Again:

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.

From Give Back (Orlando): Summary of How You Fix Your Brain (after #TBI)

merry go round with city in backgroundI’m dusting off my old Give Back Orlando materials and taking another closer look at them. Since I’m back to being on my own — but this time with a whole lot more context, as well as a whole lot more experience and a history of actual support. I’ve made amazing progress over the past 10 years, and now the page turns in the chapter of my book.

I’m not sure a book is the right comparison, though. It’s more like a merry-go-round that slowly turns in cycles, while I ride the highs and lows. Yep, it’s exactly like that — a merry-go-round. Except, it’s not always a lot of fun. Then again, with my vertigo and nausea, merry-go-rounds stopped being fun for me, a while back. So, maybe that’s about right, after all.

Back to basics… I repeatedly come back to basics in this work. And it is work. It’s continuous, regular process that really has to be a way of life for it to actually take hold. I’m incredibly fortunate that I’ve found the supports I’ve had along the way. And Give Back Orlando was one of the first resources I found that helped me so much. My old neuropsych used to tell me how impressed they were at my progress, and I have to credit Give Back for much of that.

Heck, just knowing that it’s possible to recover, that there are others who have been through it and are just getting on with their lives — or doing better than ever… that’s huge. It was a major turnaround for me, when I first read their Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series. To say that was life-changing is an understatement. It gave me incredible hope and a positive outlook that has stood me in good stead for the past 10 years.

Here are the basic tenets of the Give Back approach. If you’re struggling with TBI, I strongly encourage you to consider these – as well as the resources here.

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.

     

  2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain and get it to think through the things you are going to do.
    • Your BRAIN no longer does its job well enough on automatic pilot.
    • Now, your MIND has to make sure it does its job properly, whenever you do anything in which the results are important.
    • Any time you need your actions or your words to have quality, your mind has to make sure that your brain produces quality at every step.
    • It’s as if your mind now has to be the boss.
    • You need to be MINDFUL so that you can be an effective boss.

     

  3. Don’t depend on your brain’s weak systems for organizing and memory to manage your time and your activities.
    • Get your brain to use your full intelligence to plan your day thoughtfully, a day ahead of time, when you can think everything through well.
    • Write that plan down on a schedule form so that you take no chances of forgetting what you need to do.
    • Develop the habit of writing plans and following them, and soon you will be in total control of your time and your productivity.

     

  4. Learn how your new brain works by studying your head-injured moments.
    • If you study them carefully, they will teach you a great deal about your new brain.
    • The more you become an expert on your new brain, the better you will be able to make it do what you want it to do.

     

  5. By analyzing your head injured moments, you will realize that you make most of your mistakes when you are not mentally prepared.
    • By writing a good daily plan, and by warning yourself whenever you are about to get into a situation in which you tend to make mistakes, you will help yourself to become well prepared for almost everything.
    • As you do this, you will have fewer head-injured moments.

     

  6. Your analysis will teach you how often you get overloaded, what overloads you, and how overload affects your thinking and your ability to do things.
    • Once you know what overloads you, you will be in a position to plan to prevent it from happening.
    • This will make a big difference in reducing head-injured moments.

     

  7. Every time you discover another head-injured moment, that is another step toward recovery.
    • Celebrate the discovery, just like finding a twenty-dollar bill in the street.
    • Develop a great attitude about recognizing when your brain malfunctions, because that is what makes a great self-therapist.

     

  8. On the other hand, if you analyze a head-injured moment, it shouldn’t happen again.
    • If it does happen again, you should be ticked off at yourself.
    • What did I miss?
    • How could I let this happen to me?
    • I’m supposed to be in charge of these head-injured moments, and this one snuck right past me!
    • Figure out exactly what went wrong with your plan, and be determined to never let it happen again.

     

  9. Be sure to understand that fixing your brain is not like fixing your car.
    • This is an ongoing fix-it process.
    • Whenever something important in your life changes, the change creates a flurry of head-injured moments that need to be fixed.
    • Whenever something stresses you out or makes you ill, you have more head-injured moments.
    • As you do self-therapy, you will also discover new, unexpected and quirky head-injured moments, even after years of self-therapy.
    • So self-therapy is not a task. It’s a way of living.

     

If you live this way, you control your head injury and keep head-injured moments from interfering with your life, but if you slack off, the head-injured moments will be back.

So help yourself to welcome self-therapy as something good you do for yourself, and avoid thinking of it as a chore.

That will help you to make it a part of your life.

Well, then, get some exercise. Move.

Bangkok traffic jam with cars and trucks and motorcycles all backed up below tram lines
Feeling a bit backed up, lately

I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.

I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.

I think I’ll read that book again. I think I read it years ago, and I need to read it again.

I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.

I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.

As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.

That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.

That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.

I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.

And so I will.

I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.

I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I  know I need to do. And just keep moving on.

The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.

Will the world step up and help me with my problems? Not if I don’t ask.

Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.

I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.

A new chapter is on the way, and I’m actually looking forward to what’s to come.

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

When things don’t turn out… as expected

sunset and clouds reflected in waterI can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.

A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.

Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.

And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.

Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.

When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.

Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.

We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.

My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.

When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.

So much for vacation.

There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.

We got  home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.

Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.

So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.

The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.

But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.

And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.

But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.

And take care of myself in the process. Because I still have a lot of life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.

And so I shall.

Whatever else happens.