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…

Getting the right information about #concussion

train tracks rounding a bend and disappearing
Who can say what lies ahead?

It never ceases to amaze me, how little is generally known about concussion / mild TBI. Either it’s dismissed, or it’s viewed with a combination of fear and horror. Just mentioning to someone that you’ve had one (or two, or — like me — 9) can seriously alter their perception of you.

I’ve had conversations with people who I thought would “get it”. But as soon as I mentioned my history of mild TBI, their manner changed from collegial to guarded. As though they were waiting for me to slip up or do something stupid.

Eh, well. Whatever. I can’t get too bent out of shape about it. After all, it’s largely not their fault. We just don’t have a lot of good information about concussion / mild TBI. Nor do we have stellar management practices. It’s either negligent, or it’s over-protective. And unless I’ve been under my rock too long (always a chance of that), I don’t believe there are widely recognized, standardized best practices for docs and patients, alike.

We’re getting there. But we’re not there yet.

That being said, I’m working on updating my series 10 Things I Wish Someone Told Me After My Concussion(s) I collected 10 posts in one place, and I also published it as an eBook, to give people more access to it. But looking at it last night, when I had some time to myself, I see I really need to both expand it, as well as create a more condensed, high-level version of it.

The point of the collection is to let people know they’re not alone – and to share with them things that really would have helped me, had I known about them sooner. When you hit your head hard enough to alter your consciousness, it can impact you heavily. It might not be obvious from the outside right away, and it may take a few hours or days or weeks (sometimes even months) for things to start to get weird, but something actually has changed inside your skull.

We need to know this. Not just from doctors when we think to consult with them. Not just from experts, who have all the domain expertise. But in the general population. That’s why I’m expanding the book into print — because I want to get it out to libraries, as well as to individuals. It’ll be on Amazon, just like the eBook is.

I’ll be updating this site, too, as I go along, adding more information to help clarify. This is important. People need to know. It can’t protect them from that first impact, but it might just help them deal with that — and possibly avoid the next impact that becomes even more likely when you’re already concussed.

Watch this space.

For this news … and more.

10 Things I Wish Someone Told Me After My Concussion(s)

Top 10 Things I Wish They'd Told Me After My Concussion(s)
Top 10 Things I Wish They’d Told Me After My Concussion(s)
Price: $2.99
Have you had a concussion? A mild TBI? If you’ve recently had a head injury, you’re not alone. Millions of Americans have a brain injury every year. Sports, falls, assaults, auto accidents, and more all contribute. To take care of yourself and get better, there’s a lot you need to know.
What can you expect? Why do you feel so weird? Why are you getting so angry? How do you take care of yourself? How long will it take for your symptoms to clear up? Will this fatigue ever end?
This “beginner’s guide to concussion” gives you an insider’s view of what it’s like, what you can expect, what you might experience, and why you feel the way you do. Written by a multiple mild TBI survivor with decades of recovery experience, “10 Things I Wish They’d Told Me After My Concussion(s)” fills in the blanks of this puzzling condition and talks about anger, fatigue, frustration, the neurological basis of your situation, and more. There is always more to learn with concussion. And this book is a place to start.

Q and A For Today – #concussion, #TBI #recovery, reduced intellect, and more

brain-experiencesFor today, dear readers, we are taking a look at the after-effects of concussion / TBI. Here’s what people are looking for online:

  • tbi recovery 2016 – We’ve come a long, long way, over the years. The biggest gain, that I can see, is how people have gotten it through their heads that the brain is plastic — it changes constantly — and just because you lose some function in certain areas, doesn’t mean you’ll lose all ability to function, all across the board. The brain recruits different areas to do different things. It’s got a bunch of “second string” capabilities that it can draw in. And in fact, some neuroscientists are focused more on the whole “connectome” than isolated areas of funcationality — like Broca’s and Wernicke’s.
  • concussion cause hypochondria – Why yes, yes it can cause that. I have seen it many times. And I’ve seen it in myself. Concussion can make you hyper-sensitive. And it can put you on high alert. First, your brain has been shaken up, and it’s in crisis. It’s working overtime to get back on track, to reduce the amount of “gunk” that gets released, when it’s injured. And at the same time, it has less energy to do so… and you get the picture. That’s a potent recipe for HIGH ALERT, which of course makes every single symptom seem worse. Concussion can make every sign of discomfort into a major concern. It can turn you into a hypochondriac. If you focus on chilling out your system, and you get your fight-flight response under control, the hypochondria can calm down. But if you keep the fight-flight going full-speed-ahead, little things can — and will — continue to seem like BIG THINGS, and you’re in for a ride.
  • reduce intellect after car accident – Yep, that happens. It’s not necessarily permanent, though. Again, after you get concussed (like in a car accident), your brain is impaired. It just isn’t working as well as it could, because it’s struggling with clearing out the gunk that got released in the injury, and at the same time, it’s having an energy crisis, because it can’t get the energy it needs. It’s a problem. But it doesn’t have to be permanent. Remember: After concussion – you’re not stupid, it just feels that way
  • is it normal after a concussion to experience weird things – Why yes. Yes it is. Your brain is not processing stuff the way it normally does. Your senses can all be heightened, or they can be dulled. You can experience anxiety, mood problems, neck aches and pains, headaches, post-traumatic migraine, ocular dysfunction, vestibular problems, difficulty with balance, strange senses of motion, lack of coordination, cognitive fatigue, concentration issues, and more. You can also start to feel every little thing (see the hypochondria entry above). And the world around you can start to feel like a very strange place. This completely, 100% normal. And it passes. When your brain sorts things out… clears out the gunk… figures out how to get energy again… and adjusts to the new “pathways” that information needs to follow… life starts to feel normal again. It might be different than before (that can feel weird), but you’re getting back to normal, and your brain is back to doing what it needs to do. Adjust. Experience. Grow and change as life takes its course.

You just gotta hang in there and work with it. Concussion / TBI is not easy, but it doesn’t need to be the end of the road.

Good-bye chocolate. :( It’s been great… kind of

Shot down... again! Augh!
Shot down… again! Augh!

This is terrible. I have to stop eating chocolate. My go-to for those times when I need a pick-me-up and I want to avoid coffee, has now officially failed to serve its purpose.

I’ve had a steady headache, now, for many weeks. And after taking a close look at my past several months of diet and exercise patterns, I found a number of things that I started doing over the holidays, which probably contributed to the headaches.

First of all, I started eating more candy after Halloween. We don’t get trick-or-treaters at our house, but we bought candy anyway, partly to take to other events we were attending. I didn’t overdo it too terribly — I had a couple of those little Hershey’s mini candy bars during the day, and then again in the evening when I got home from work.

Then I ate like crazy from Thanksgiving, on. It wasn’t like I binged on cookies and cakes and junk food (although I had a lot more pie than was good for me). I was good about it, overall, steering clear of the junk food and Christmas cookies. But I did have two full Thanksgiving dinners, with a ton of carbs, and lots of sweets, and more coffee than I was used to (I had to keep going, after all). And again, the chocolate candy became a staple at our house, with a bowl in the living room being almost constantly filled… being emptied… then filling up again.

Then, over Christmas, I continued to eat chocolate. Not bingeing, but a steady flow — a couple of pieces (or 3 or 4) in the early afternoon, a couple (or 3 or 4) later on, then another couple (or 3 or 4) in the evening while I was making dinner. Just to keep going. I didn’t want to drink more coffee, because my headaches have been so much better since I cut down drastically to 1/2 cup in the morning and 1/2 cup in the afternoon.

Christmas was a sleepy time, and I started drinking regular black tea again. Red Rose is my favorite. Especially with a lot of honey and some butter. Just the thing to pick me up.

But then the headaches started again. And a lot of things started getting worse, too. My balance has been off. The ringing in my ears… deafening at times. Light and noise sensitivity… much worse, lately. And my ability to attend to things happening around me really tailed off during the week between Christmas and New Years. I started to snap at my spouse. Freak out over little things. Get aggressive and hostile, like before. Not good. And a lot of the progress we’ve made over the months before, really suffered.

I got better, behaviorally, after I went back to work with my regular hours. But the migraines continued. Along with them… Nausea. Tingling and tics on the left side of my face. My left eye weeping. The tremor in my right thumb.

So, last week I decided to get OFF the caffeine and chocolate completely. I just stopped eating chocolate for a few days. I stopped drinking the tea and sneaking extra coffee when I felt a little low. I started keeping my energy up by eating healthy snacks — coconut milk yogurt, fruit, nuts, and gluten-free stuff. And I drank more water.

At first, I didn’t feel much difference. But after a couple of days, the migraine really subsided, to the point where it was … gone! As long as I kept my blood sugar up and drank my water, I was in a good place.

Then, last week, there was a lot going on, and I “fell off the wagon”, so to speak. I didn’t go back to the tea and excessive chocolate, but I started having extra pieces of chocolate in the afternoon. And when I was short on sleep, I had some extra coffee in the afternoon.

And I paid for it. At first, I didn’t feel anything. I actually felt great, to be eating chocolate again. And I was actually awake, thanks to the extra coffee.

But then the headaches returned. And with them the nausea, the facial ticks and tingling, the tears in my left eye, and an overall sense of sh*ttiness that I’d thought I was past.

So, again, I’ve cut out the afternoon coffee and all chocolate — and just when I’d stocked up on “healthy” dark chocolate with almonds and sea salt… Augh! I didn’t see changes right away — I only just stopped it, in the past day or two (I can’t remember exactly when), but I can tell a difference. I don’t have as much of a sick headache. I have a bit of one, but when I drink my water and keep my blood sugar up, and I don’t have the chocolate that is calling to me from the cupboard, I don’t have the same level of pain as I did before.

Plus, I need to keep my schedule steady. I find that if I laze around, I feel worse. I really do. And if I sleep too long on my naps, when I wake up, I’m in ragged shape and tend to snap out at my spouse, which is never good. I am groggy and confused, which makes them anxious, and our arguments escalate very quickly.

Like I said – not good.

So, there it is. As much as I love chocolate and have happily used it as a substitute for coffee, it’s still got caffeine in it — as well as other substances which I’m told contribute to migraine. None of this is good for a person like me, so it’s good-bye to chocolate.

And black tea.

And that afternoon coffee.

Fortunately, I still have my coconut milk yogurt, fruit, and nuts to keep me going and keep my energy and blood sugar levels up. I also keep an eye on my heart rate, and when it (and my blood pressure) rise to an intense level over events happening around me, I lower it with the system I devised over the years. That’s also an important consideration — and during the holiday blow-ups and meltdowns, my HR and BP was definitely elevated.

Enough of that, already. Enough.

So, I’m on the mend. The headache is much less than before, and I’m feeling more functional than last weekend, for sure. It does make me feel better, to have identified what the heck causes the misery. It lets me do something about… which I do.

As always… Onward!

7-year NFL veteran Domonique Foxworth saw ‘Concussion’ and it made him question everything | For The Win

iceberg-field
Which issue is going to get in my way today?

I found a great article today, talking about an NFL veteran’s reaction to the movie Concussion:
http://ftw.usatoday.com/2016/01/domonique-foxworth-concussion

Foxworth says:

To me and other former football players, things that occur normally in all people’s lives–like forgetting a name or where the car is parked, getting upset with a spouse, or having difficulty controlling an impulse — can feel similar to the startling sound, eerie shadow, or unexpected footprint foreshadowing a confrontation with the movie’s villain.

This is absolutely consistent with the experiences of so many TBI survivors. Those little glitches that “everyone has” take on added significance, and that actually adds to the problem. Our senses are heightened, our stress levels, too, and with that comes a spiraling effect — problems which are troubling in and of themselves, become even moreso when you see them as tips of a field of icebergs lying in wait to sink your proverbial ship.

It’s a vicious cycle, no doubt. And while the movie Concussion has raised awareness, I think it’s also had its drawbacks — namely, it’s a couple of hours of dire warnings, followed by a mad marketing blitz of “awareness raising” around all manner of advice, products, solutions, etc — many of which cost a fair amount of money, many of which are absolutely untested by anyone who’s even remotely independent.

It’s the perfect storm for a whole new market — concussion prevention and awareness. And it’s got the perfect target audience: parents who are concerned for their kids’ safety and who will pay any amount of money to protect (or treat) their kids from concussion.

While I do believe it’s so very important to raise awareness and educate, the whole “protection” business strikes me as just a bit mob-like. Think about the protection business in organized crime — it’s made clear to a store owner or someone who lives in a certain neighborhood that things are dangerous there, but for a fee, some designated individuals will protect you from that danger. Whether the danger is real or not (or existed before the protectors showed up), is debatable. But the fact of the matter is, once you pay your money and do so regularly, things get calmer and you can go back to your regular business.

Marketing so often plays that same game — and some industries, too. Take, for example, the “flu drama” we experience every winter. When I was growing up, people got the flu.  Sometimes, if they were weak or very old or very young, they got seriously ill. Some of the weakest, oldest, and youngest, did die. But it wasn’t portrayed as this plague-like threat that promises to sink Western Civilization and plunge our nation into bankrupted chaos. However, now that we have expensive flu medicines, along with flu shots (which are highly controversial), suddenly, there’s a FLU SEASON, and we’re continually inundated with flu med commercials, from the time of first frost, till Memorial Day.

Making people afraid of being sick is really good for business. And making people afraid of getting hurt, is too. Especially when there are so many new products and services available to consume.

Anyway, it’s been a challenging couple of days, so I’ll wrap up. I’ve had a lot of headaches, as well as trouble sleeping and keeping to a schedule. Fatigue, blurriness, mental fog… Being off my schedule for a week and a half, while refreshing, had its own set of challenges. And now I’m transitioning back into the flow.

In the end, I think the discussions are helpful about concussion, and I am very happy that people are getting a clue about the issues that often come with repeat head trauma. It’s my hope that people will continue to discuss, rather than just getting freaked out, purchasing a product, and then expecting someone else to manage the risk for them.

When we give up our autonomy and trust folks who are not trustworthy, that’s a recipe for trouble. Especially for the kids who are put in harm’s way.

Not myself, this past month or so

I hate to admit it, but for the past month or so, I haven’t felt like myself. That is, the self that I had come to know myself to be, over the past years… the self I had trained myself to become — and to notice.

I’m not whining about it. I just need to go on record, so I remember it later. Not all is hunky-dory, and I’ve spent an awful lot of time masking all this and keeping myself from thinking too-too much about it. That’s counter-productive. I hate hearing myself talk about what’s wrong, but I need to be aware when things are not ideal, so I can do something about it.

I haven’t got time right now to chronicle everything I am doing to address these issues, so for now, I’m just going on record.

Lately, I’ve felt like things are unraveling… starting back in September when my PCP died, and the only doctor I ever felt comfortable with was gone forever.

Then in October came the announcement that the company I work for is being acquired, and all the assumptions and plans I had about my future (going back to school, getting my degree, staying on there until I could finally retire)… that all became incredibly tenuous.

Then in November my neuropsychologist tells me that they’re retiring this coming spring, and the one working relationship I’ve ever had with anyone who didn’t make fun of me or treat me like there was something wrong with me when they simply didn’t understand, suddenly got an expiration date.

The car needed a couple thousand dollars of repairs over Thanksgiving, and my bank started warning me that I was low on funds.

And then in December I find out there will be layoffs, and I and my group barely missed being cut. Someone I really depended on for advanced technical support got laid off, so now I’m sorta kinda hung out to dry, in one respect.

It’s just been a heck of an end of the year.

At least my spouse and I are reasonably healthy (aside from some nasty colds — knock wood), and we’ve had no other calamities. But piece by piece, some of the main supports I’ve been relying on, have been removed.

I guess it’s time to find new ones.

And it’s been strange. I haven’t really felt like myself for over a month. I’ve been a lot more on edge, blowing up more at my spouse, getting confused and disoriented at work. At Thanksgiving time, I was balancing between completely losing it and letting off very controlled bursts of angry steam. And while I’ve rarely been a real Christmassy kind of person, this year especially I just haven’t been in the mood. The weather has been strange, but after the absolutely sh*tty winter we had last year, I don’t care that it’s going to be warm and sunny on Christmas Day. That’s this Friday, and, well, it can come and go, for all I care.

I just don’t feel like myself. Nothing seems worthwhile, and in all honesty, the only thing that brings me total satisfaction is trapping the mice in my basement. I rigged up several traps on a little ledge where I’ve seen them run in the past, and I’ve caught four of them, so far. I have a feeling I’ll be trapping all the mice in the neighborhood, by the time all is said and done, because my garage is not very well sealed, and I’ve seen them come in through gaps in the trim. Right in front of me. Brazen.

Well, now those little brazen bastards are getting dead. And while I do feel pang of quasi-Buddhist regret that I’ve taken a life, I do NOT feel regret that these creatures aren’t running amok through my basement. I figure, I’m releasing them to their next incarnation — just speeding up the cycle of life for these rodents.

It’s not the death that appeals to me. It’s the yes-no, success-failure, instant gratification of seeing that at least something I’ve done is working. It’s basic. It’s primal. And I’m managing to successfully defend my castle against at least some maruaders.

I just wish I felt more like myself, instead of being shaky and tired and disoriented and prone to error. I’m spaced out, a lot of the time, I feel like I have more on my head than I can handle, and while I’m sure things will be fine and I’ll be able to handle whatever comes along, it’s still tiring, and I feel like I’ve lost my mooring.

Maybe I have. Maybe I have.

I just have to get it back, I guess. It’s now officially winter, and I’m ready for it. I just want to hibernate, go underground, and maybe that’s what I’ll do, more or less. The last several months with the company change have been very chaotic and unsettling for myself and everyone at work. It’s next to impossible to make any plans, and nobody knows what the criteria are for deciding who stays and who goes. Nobody can give us any clue, either, because that might tip their cards, and everyone might just take matters into their own hands, and then the deal might fall apart.

So, hibernation (figuratively speaking) might be the best thing to do. Keep everything simple and lay low. Cut back on social media (which I have). Stop reading the news (which I must). Concentrate on what matters most to ME (not the rest of the world). And focus on the basics — eating right, exercising regularly, and doing things that appeal to me and that I love and which also make a constructive contribution to the rest of the world.

I also need to get back to dealing with the logistical issues that come up with me. Sensory issues are problematic — light and sound and touch have been giving me problems. I’m dizzy a lot — almost fell over the other day for no good reason. I’m space-out, foggy, and I feel a split-second delayed, though that could be a symptom of me still being sick. I have problems typing, and my handwriting is a mess. I skip the first letters of words while I’m writing in long-hand, which is a new one for me. My temper is short, I’m getting “snappier” than usual, and I have bouts of intense depression. And lately, the headaches are back, along with the episodes of sudden pain shooting through my head, followed by feeling dull and out of it.

But hell if I’m going to take that Imitrex. F*ck that sh*t. Talk about feeling spaced-out… I feel bad enough as it is, without adding medication to it.

So, I do my breathing exercises and get my head out of a stressed-out space, and it helps a bit. It also helps to ignore it and just get on with my life. But the headaches are getting intrusive, again, and when people like my chiro or my massage therapist ask me about them, it just irritates me, because the things they do for me don’t actually seem to help all that much, but they’re so convinced that those things are The Ticket. It’s nice that they try, and I know they want to help, but there’s nothing that seems to really Work for me. Not these days.

And trying to explain that to them is a pain in my ever-lovin’ ass. People get so sensitive and offended and frustrated when I tell them what they do is not working. No science, no tweaking their approach. Just getting irritated and frustrated — and keeping on doing the same thing as before. So, I quit saying anything. Because even when I try to explain, it doesn’t help.

It’s the classic tension between what appears to be, what people think really IS, and what my experience of things is. And that fragmented collection of disconnects makes me absolutely crazy.

That, and the fact that my weekly schedule is about to change, with my neuropsych seeing me on Fridays at noon, instead of Tuesdays at 5:30 p.m.  Argh! Change! I hate it!  And I hate that it makes me so unsettled. I wish it weren’t so.

But bitching about it won’t change anything. I just need to get on with my life.

My new mantra: Screw it. Onward.

How easy it is to fool myself!

It's so easy to get pulled into the illusion
It’s so easy to get pulled into the illusion

TBI can certainly make life interesting… in the sense of that old Chinese curse “may you live in interesting times”. One of the “interesting” things about TBI, is how it can screw with your sensory perceptions, as well as you interpretation of those sensations.

Anybody with TBI can probably tell you how life takes on an unreal quality when you’re hurt. Things slow down. Or speed up. Things that never bothered you before suddenly become unbearable. Things that you used to not care about, suddenly take on all the importance in the world.

And life can seem pretty unreal.

Our lives are turned upside-down in a number of ways.

  1. We may not sense our environment the way we used to. First off, our attention can get wonky — TBI often makes you more distractable, which means you’re not paying consistent attention to the world around you. And your short-term working memory (the short-range stuff that makes it possible for you to talk to people and remember what they said earlier in the discussion, or that lets you start a task and complete it) can be messed up, too.That means you don’t pick up all the clues you could, or you drop the ones you get — and never know it. I had a hell of a time with holding conversations for many, many years, because I didn’t realize I was losing track of what people were saying — and I never took corrective action until after I found out. (I’m much better, now, by the way.)  Distractability can also affect your perception of the world around you, keeping you from sensing. It’s not uncommon for me to walk into furniture and never see important details and also not hear what I should, thanks to distractability. So, the world around us is literally changed at the very first point we contact it.
  2. The information that does get through to us can get distorted along the way. Chemical_synapse_schema_croppedWithin the body, between the synapses, there’s this thing called the “synaptic cleft” — a space between the synapses that electrochemical impulses need to “jump” to transmit information.  Per Wikipedia, it’s

    An electrochemical wave called an action potential travels along the axon of a neuron. When the action potential reaches the presynaptic terminal, it provokes the release of a small quantity of neurotransmitter molecules, which bind to chemical receptor molecules located in the membrane of another neuron, the postsynaptic neuron, on the opposite side of the synaptic cleft.

    There are 100–500 trillion synapses in the human brain alone — and considering that there are also neurons elsewhere in the body (the gut, for example), that’s a lot of tiny little spaces that signals have to get across. On top of all those billions trillions of connections that need to be made properly for info to get across, TBI can mess with your biochemistry, your neurochemistry, either increasing or decreasing neurotransmitter action, so that very sensitive, very fine connection that needs to get made… just so… stands a pretty good chance of getting at least a little mucked up.

  3. And then we come to our brain. The very thing that got hurt. Our brains may not process what comes across in exactly the same way they used to, and our experience of the information that gets through may be distorted. The stories of light and noise sensitivity are myriad, along with accounts of sensitivity to touch, the inability to tolerate certain scents and sensations after a brain injury. With me, even years later, some days can feel like my whole body is going haywire. And I can’t deal. When I’m tired, when my brain is taxed, when I’ve run out of steam… yah, all of the above… and more.
  4. Our interpretation of those experiences may be messed up, so we interpret what’s happening completely wrong. I’m especially prone to this. And the armies of TBI/concussion survivors who are impacted by this, are legion. In my own personal case, my mood and emotions are strongly impacted by how I feel physically. When I am in chronic pain, I tend to get depressed and feel like there’s no way out. When I am exhausted and feel  physically ill with fatigue, I can slip into a state of mind that doesn’t care if I wake up in the morning. When I am just feeling physically worn out from the stress of dealing with the day-to-day, and I have to work extra hard to interact with people, I tend to interpret that as not being good with people, being anti-social, and generally being socially useless. It has nothing to do with the facts of the matter. I’m just feeling that way, and I’m letting that feeling hijack my judgment.

So, TBI hits you on a number of levels that can progressively screw with your entire perception of yourself and the world around you. It’s a whole-system head-trip, and the end result can make us feel / think / act like we’re crazy.

Which may seem like bad news… but it doesn’t have to be.

See, the thing is… even without TBI, our bodies can play tricks on us that eventually affect our minds. We ALL have those days, when we’re distracted and not paying attention to the world around us… which causes us to miss important pieces of information. We do it all the time. We’re paying attention to our phone screen and miss the last sentence someone said to us. We’re fiddling with the car radio and miss our turn off the freeway.

And all the other conditions apply to everyone, as well:

  • Everyone’s neurotransmitters need to jump the gap, every time our senses communicate what we do manage to detect, and neurotransmitters can vary without needing an injury to complicate them.
  • Everyone’s brains need to decode what comes across, and the human brain is notoriously inconsistent — especially when it comes to fatigue, poor diet, illness, and other factors that screw up our cognition.
  • And of course, we’re all subject to flights of fancy and delusions, where we misinterpret what we think has “come across the wires”. People are extremely good at reading meanings into situations — regardless of whether those suspicions are valid.  Most people are walking around with a made-up version of what’s happening around them, and most of us are wrong in many subtle ways. Basically, we’re so good at forming our own meanings and inventing stories that make sense of an often senseless world, that countless people are cognitively isolated and living in their own private Idahos, even while thinking everyone else is living in that same state with them.

The benefit of TBI, is that it accentuates all these conditions and can make them so exaggerated, that even we can tell we’re full of sh*t. Which is a helpful place to start from. Think about all the people walking around who think they’ve got it all figured out — and are making life a living hell for themselves and others. Now, TBI can absolutely blind you to the wrong spots in your thinking and process, so that can be a problem, but for those of us who understand that our brains have been impacted and our minds have been warped by this thing called traumatic brain injury, we’re actually a bit ahead of the game.

If you want to live well, you need to understand your own limitations and factor them in — and not take yourself so damn’ seriously. Being ultra-familiar with your own feet of clay is a good place to start from, for having no clue of how clueless you are can make you downright dangerous — to yourself and others.

Knowing what’s busted is the first step to fixing things, and far from being a liability, it’s ironically a very strong place to start from.

After that, anything is possible.

Onward.

Remembering what matters

spiritualityI had an interesting exercise, over the past week or so.

My hosting account got hacked, earlier this month, and my hosting provider shut down access to all of my websites.

So, I had to go back in, make copies of everything, and then clean out the directories.

At first, it seemed like a daunting task. And the thought of removing all the work of the past 10-15 years, seemed mammoth.

But I did it. I systematically went through all the sites, backed them up, then tore out everything I could, leaving almost nothing behind.

And in the end, what had seemed like a daunting, overwhelming task, turned out to be for the best.

Because I realized as I was working, that all those sites were a kind of busy-ness I had used to occupy my mind and keep my thoughts off my troubles, while my troubles piled up around me. They served a purpose, for sure — keeping me mentally engaged and interested in something outside myself. But in the end, they amounted to distractions, basically, and not much more.

I never did manage to take any of them further than just standing up websites, putting some info in place, and then going off to do something else that was more interesting. They were hobbies, really, which I told myself were supposed to become something bigger… or make me money… or become a business…

None of it ever panned out the way I hoped it would, but no surprises there. I never stuck with any of it long enough for it to get a foothold. Starting something real often takes constant work — almost non-stop work — for months and years on end. I thought I could do it, but constant fatigue pretty much killed that off.

In a way, I kind of scuttled my own armada of remote-controlled toy ships. I didn’t keep up with the security updates, and I ultimately disqualified myself from the game I thought I wanted to play. Turns out, I didn’t actually want to play that game of constant work and vigilance. I just wanted to play.

I wanted to explore. To discover. To try things — on my own — and not be interrupted by concerns about the everyday. I wanted to be a mad scientist of sorts… the kind of investigator who ventures into uncharted territory and finds what’s there before the rest of the world even has an inkling that there might be something “out there”.

I like to come up with new ideas and inventions and programs, I just don’t like to have to sell them to others. Heck, I don’t even like to have to explain them. I just want to invent and work with them. I like my solitude. I like my quiet. And when everybody is milling around clamoring to get a look at what you’re doing (or make a comment on it), that’s not exactly the quiet solitude I crave.

Ironically, the more solitude and quiet I have, the more productive I am. After I ripped out all those websites, I spent a fair amount of time going through old files and folders I had, and I rediscovered a bunch of notes I collected over the past couple of years about metaphysical subjects that used to fascinate me.

After my TBI in 2004, I lost the constant sense of spiritual connection that I’d had ever since I was a little kid. I felt both religious and spiritual, and when I was growing up, I was a very religious kid. I was really into studying the Bible and prayer and contemplation — when it came to religion, it was really the people who turned me off. I just couldn’t stand the hypocrisy of people who treated their “salvation” like it was a get-out-of-jail-free card that absolved them of all their weekly wrongdoings when they showed up to church on Sunday. I felt so strongly about what I considered a “misuse” of true faith, that I convinced myself that I was not a religious person — I was just spiritual.

But, in fact, I was deeply religious. Perhaps too religious for the everyday world.

After my fall in 2004, all that was wiped away. I lost a lot after that brain injury — my ability to read, stay focused, my emotional control, my ability to think clearly in stressful situations, executive function that let me make good decisions (that had been a bit lacking before my fall, but after, what little I had just flew out the window), and decent sleep/rest… to name a few.

But most notable to me now, is my loss of spirituality or religious feeling. At the time I lost it, it was the strangest thing — I felt as though I had never had it, in the first place, and I could not understand why anyone would even want it. I could remember feeling spiritually connected in the past, but it was like looking at an exhibit behind glass.  Very interesting… but irrelevant.

Now things are very different. A year or two ago, I started to have religious feelings again. I would have these incredible rushes of feeling like I was connected to Everything, and I would feel absolutely ecstatic. Sometimes, it would be almost painful… that bittersweet sense of being plugged into it all.  And sometimes it would be just a gentle rush that was a great comfort to me. And when I would look up Bible verses online or crack open one of the four Bibles I had from my childhood, I would get that same old sense of devotion and reverence I remembered from being a kid.

And I found myself starting to pray again.

It felt a little strange, but it made me feel better.

Anyway, looking through my notes and books I’d been studying, 15 years ago before my TBI in 2004, I suddenly remembered why they had meant so much to me. I realized why I’d kept them, despite feeling nothing for them, when I looked at them, for many years. I’ve had them on my bookshelves all this time, not sure if I was going to keep them, but not able to get rid of them. I couldn’t even box them up and put them in a safe place. I kept them on my bookshelf in “their place”.

I do feel something for those books and ideas, now. And I remember — not just mentally, but in my bones, so to speak — why those things mattered to me. Why they still do matter to me. The writing and research I did for so many years before my brain injury… that’s still with me. And the interest endures. It’s taken 11 years for it to come back around, but it’s there. I made a wild and massive detour — a bunch of detours — along the way, and some of those almost got me killed, but in the end, it’s enriched my understanding of who I am and where I fit into the world I inhabit.

And it makes me better able to feel compassion and patience for others who are working through their own difficulties.

Some of the things that used to matter so much to me… that went away… are back. I don’t know if it will endure. I don’t know if it will all dissolve in a matter of weeks, months, years, decades…. or if I’ll simply forget they exist (as I often do) and go back to that feeling of disconnection that has become so familiar.

But whatever happens later, right now I am connected to one of the threads that has made my life so incredibly meaningful ever since I was a little kid. And it feels pretty good.

And then I hit my head (again) – now I can’t sleep

Man, this is so messed up. When I think about it, I start to get pissed off. And then I remember what getting really pissed off does to me, and I back it down a bit. I get my mind off it. I think about other things. I redirect the energy towards something constructive – like working out.

Or thinking things through and coming up with a workable solution to problems in front of me.

Last week, when I was getting ready to come home from vacation, I was loading my car, and somebody pulled up right behind me, almost blocking me in. I could swear they were looking for a fight, because when I asked them to just pull back six inches, they got all defensive and “explained” to me that they were trying to leave room in the back for someone else to park. Looking behind there car, there wasn’t even enough room for one of those little Fiats. Maybe a scooter. But no, they were adamant that they needed to park that way. And when I asked again, they said some sh*t that questioned my ability to drive, if I couldn’t pull out of that spot.

I was tired and hurried, because I had all of 10 minutes left before we had to be out of the condo unit, so I just told them to forget about it. They wanted to keep talking it through, but I didn’t have the time, so I dismissed them and just decided to take care of my own stuff, rather than waste precious time on an prolonged discussion with this lonely-hearts type person.

I f*cking hate people who start arguments just to get attention. I really do.

I could just barely open the back of my van for that last load, and then I was done. I grabbed the gate and pulled down hard…

You know those moments when you have a fleeting sense that something is amiss, but you can’t think what it is? For a split second, I had a feeling that something wasn’t right…

And then >clunk< – the corner of the descending gate caught me on the top front of my head.

Ow.

It wasn’t so hard that it dazed me. I didn’t see stars. It didn’t feel like I got my bell rung. It just hurt like a motherf*cker, and it was at the worst possible time for something like this to happen. It’s also one in a series of bumps to my head that I’ve experienced over the past few months. I keep hitting my head on car doors… while getting in… while getting out… while packing for the trip home…

I stopped for a moment to feel my head to see if I’d drawn blood, but there was none. Not even a bump or a knot. It felt like I’d dented my skull, but my pate is pretty bumpy and knotty to begin with, so I couldn’t tell if this was a new or existing dent. The whole area around where I hit my head hurt, so I had a hard time telling where exactly I’d gotten clunked. (Interestingly, almost a week later, I can tell more clearly where I got hit. It still hurts. And it seems like there is a definite dent there.)

The thing that really got me was the cascade of muscle tightness in my head, jaw, neck, and shoulders. Everything started to tighten up and cramp. My jaw got really tight, and ever since then, I’ve found my jaw clenching more than usual. I need to do something about that. It’s not good for my teeth. Or my relaxation. I’ve noticed it’s really hard to relax, when my jaw is tight.

We got out of the condo unit in time, and then we headed for the beach. I couldn’t tell that anything was different with me. I did feel a bit more antsy than usual, but I chalked that up to leaving a beautiful vacation spot for my usual home…as well as the company of a friend who joined us for one last afternoon on the beach. We drove home late, got in late, and that was that.

Back to regular life.

Things have been going pretty well, overall, and aside from some residual tightness around my skull, I haven’t noticed many pronounced differences in how I feel on a regular basis.

One thing that does stand out, however, is that I’m having a harder time getting to sleep at night, and I don’t feel as rested when I wake up. I can’t seem to sleep like I had been before. I’ve been antsy and agitated, and I haven’t A) been able to really relax, or B) felt like relaxing. The thing that gets me is that it has a cumulative effect, so I need to not let it get ahead of me.

On the bright side, I’ve been very motivated to get things done. On the downside, I’ve been feeling really scattered and despite going-going-going, I feel like I’m getting less done, which is tiring on top of everything else. I can’t let myself get as tired as I used to. It’s no good for me. And I can get hurt again, if I’m not careful.

So, what to do? The main thing is to really get how this is affecting me, and do something about it.  I can’t leave myself in ragged shape. Gotta get moving and do something about it.

That includes making a point of getting good rest. Not staying up late and getting up early.

It includes eating right (which I have been) and getting good exercise (which I have been) and making sure I rest well and don’t just push myself like a crazy person, 24 hours a day.

It also includes finding a new doctor. I’m going to find an osteopath, rather than an M.D., who works with the whole body to adjust and align things. I’ve had it with M.D.s and the whole mainstream AMA medical establishment. They’re way too dysfunctional, and I need to find a provider who makes a point of understanding how the body is put together — not just what medicines will do what for which condition.

So, I’ve got steps.

The day is waiting. Onward.