Ah… the job.

It’s personal assessment time at work, these days – end of quarter (4th quarter 2016), and end of year for 2016 in general. I have to get my quarterly recap in by the end of the day today. I also have to do my goals for this coming quarter. And my end of year is due by the end of this month.

Pressure… This should focus me.

Fortunately, it’s Friday, so probably nobody’s going to be at the office, so it will be quiet.

I’ll put on some music and start writing, and see what comes of it.

On days like today, I don’t mind my job at all. I’ve started listening to motivational and educational audio while I’m driving to work. I’ve found some good podcasts, as well as some good audiobooks.

I should have done this years ago, but for some reason, I couldn’t get my act together.

Now I’ve got it together, though, so that’s fine. It’s a good way to start the year — and it also helps me get clear about my goals and objectives.

It’s actually more than a job for me. It’s my life. And my life is pretty good, I have to say.

As ever… onward.

Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

TBI Recovery – more work than you can ever imagine

5-Minute Read

shoestrings tied on a shoe
I always tied my shoestrings in a way I didn’t like – till last month

After nearly 50 years of tying my shoes in a way that makes the laces stick out in weird ways, I’ve finally started tying them in a way that makes them neatly lie flat across my shoes.

I’ve been bothered by my “askew” shoestrings for as long as I can remember. When I was a kid and first learned to tie them, I was happy I’d just figured out how to tie them. But the way they lay — all scrunched up and crooked — really bothered me.

I told my dad once, and he said I could tie them differently, by looping the shoelaces around in the opposite direction. At the time, it was too much for me to wrap my head around. It didn’t make sense to me. Plus, I’d only mastered the motion (and muscle memory) of tying them properly in the one way I knew how.

And I was afraid I’d lose the tenuous skill I’d already learned.

Years later — nearly 50 years, to be more accurate — I’ve finally decided to tie them in the way that makes the loops lie flat across my shoes. They’re less likely to trip me up, that way. And I like how they feel better than the old way.

I’ve been doing this regularly, for the past couple of weeks — making the concerted effort to tie them in the way that makes them neat and tidy.

But you know what? I keep going back to the old ways. Back to the old habit of tying them in a way that’s really second-nature to me, after doing it that exact way for all these years.

And that’s taught me, yet again, about how and why TBI / concussion can be so difficult to recover from. The “wiring” that you’ve trained to use in a certain way — habits of thought and action, movements of your body, ways you think about things, routines of sleeping and waking — may have changed in ways you cannot see, but it’s all switched around, so you have to find new ways of doing things that you’re used to doing in one certain way… since forever.

And no matter how well you train yourself to do things the new way, no matter how much conditioning you have, no matter how well you like the new way, no matter how badly the old way has been disrupted, your brain and your body are still going to try to do things the old ways, the ways that they think they still know how to do.

They don’t, of course… or maybe they need to be intensely retrained. But they don’t realize it. And that’s one of the hallmarks of TBI: not knowing what’s messed up, until it’s too late (and then, sometimes not even realizing it yourself).

No matter how convinced I am of the new way of tying my shoelaces… no matter how much I may like the new way of doing things… no matter how much I used to hate the old way of doing things… that’s what my brain and body and muscle memory are used to. It’s what they feel comfortable doing. Even if it doesn’t work.

So, I have to keep after it. Like all of us who are dealing with somewhat broken brains / disrupted wiring. Our systems will go for the way that they think is easiest and what’s most familiar. They just don’t know it won’t work out.

And that’s what we have to keep learning and relearning and readjusting to, over and over again. No matter how long ago the injury happened.

It takes a ton more work and effort and attention and focus and determination to recover — even from a “mild” traumatic brain injury. That’s what most people don’t understand… but every long-term survivor knows, all too well.

Be that as it may… Onward…

Nine years ago, I started this brain injury recovery blog

9 year blogging anniversary emblem
Emblem reads: Happy Anniversary with WordPress.com! You registered on WordPress.com 9 years ago. Thanks for flying with us. Keep up the good blogging.

And it’s been one of the best things in my life – ever.

At the time, back in the “wee hours” of 2008, I was so confused, so anxious… and afraid. I couldn’t believe I had been injured as much as I had, in the course of my life, and nobody had ever noticed. Nobody had ever thought anything of it. I know I was good at covering things up — but was I really that good? Doubtful. Rather, people saw there was something “wrong” with me, and they attributed it to:

  • laziness
  • poor character
  • sinfulness
  • being young and “unformed”
  • lack of proper training
  • rebelliousness
  • anything else you can think of that blames a person for how they’re behaving

The fact of the matter was, I’d been clunked in the head — a bunch of times. And those injuries, which were never properly recognized or treated (or even just factored in) shaped my life and personality and behavior in certain ways that made me look either like a flaming idiot, or just plain “trouble”.

Part of the problem was, I appeared to be pretty smart in certain ways. I could do some things really well — like memorize a whole sheet of vocabulary words in an hour’s time, and then not only test well on them, but also be able to use them in conversation… or be a great track team captain, motivating my teammates to do their best. But for some reason, under various circumstances (which could never be predicted by people who weren’t paying attention, anyway), I’d “fall apart”. Become a discipline problem. Become combative, resistant, defiant, and disruptive in class as well as group activities.

Looking back now, I can see how tired I was, so many times, and that fatigue flipped the switch on my issues. It was like flipping on the lights in a lecture hall — all of a sudden, my issues were lit up bright and glaring.

But of course, I was just being rebellious. Sinful. Willfully difficult. I was just being bad.

Now, I know better. And I’ve forgiven myself for so many things I did wrong when I was younger. The fights, the conflicts, the drug and alcohol abuse, the poor grades, the times I screwed up great opportunities during my youth and young adulthood, because I couldn’t put two ideas together.

Looking back over the years, I can see so many times I came up short — I didn’t live up to my abilities, or to others’ expectations. And I’ve been pretty hard on myself, all these years. And I need to keep forgiving myself, because it’s so easy to forget there was an actual reason I screwed up, when I “should” have done better. It’s a daily practice, this forgiveness business. Even to this day, I still have old habits of thinking about myself in pretty task-master-ish terms. And I need to keep practicing. Because it’s oh-so-easy to fall back into the training of my youth, and tell myself I’m just slacking or I’m taking the easy way out, or I’m being a total loser… when I’m really just in need of a good night’s sleep and a different way of tackling my problems.

I have come an incredibly long way, in these past 9 years. I’ve gotten a lot of help along the way… which is now pretty much gone, because my main supporter moved halfway across the country. But I’ve learned a tremendous amount from those years we worked together, and I am eternally grateful for their help. I’ve been seeing another neuropsychologist, since they left, but this new one is not nearly as experienced or insightful — or as patient and compassionate — as the other one was. I’m kind of on my own with this new one. But they serve a purpose, and you do what you can with what you have, so…

Anyway, since I’m now into my 10th year of active mTBI recovery, there are certain things I want to do, to commemorate the progress I’ve made. Like looking back at my past blog posts and elaborating on them. I’ve written a lot, in the past 9 years, and there’s still some food for thought there. I’d like to put that to good use.

So, I shall. And keep moving forward. Always. Onward.

It’s a new year — Happy New Year to everybody!

Let’s make it a good one.

Sharing: Saba’s tips for holiday survival — Brain Injury Society of Toronto

BY: SABA RIZVI

The holidays are a tough time for everyone, and this is especially true for brain injury survivors who are often dealing with issues such as chronic fatigue, pain and cognitive fatigue.

Here are some tips I’ve come up since acquiring my brain injury a few years ago on how to get through two of the more challenging parts of the season: holiday dinner and shopping.

Read the full post here: Saba’s tips for holiday survival — Brain Injury Society of Toronto

Nearly there – on the eve of Christmas

Christmas wrapping
The final push is on…

I’m supposed to be shopping, right now. I intended to get up early and head out to a local department store to pick up the last of the gifts I’m giving. Then I was coming back to deal with one of the cars having a nearly-flat tire. Then I was going to run some last-minute errands, followed by a nap, followed by gift wrapping, followed by making the Christmas turkey, followed by preparing the trimmings, followed by more gift wrapping… and then finally supper.

It sounds like a lot, only because I have it all broken into different pieces. But breaking things up into different pieces and then scheduling each one in its own time slot actually makes it much easier to take care of everything.

Because it’s all got to get done. It’s not like it’s optional. The gifts need to get wrapped, and the food needs to get cooked. The car needs to have sufficient air in the tires, and I have to have my nap. It will all get done… so long as I keep my cool.

Yesterday, I talked about how I need to keep my cool around my spouse when tensions get high. And it’s true. As much because of their cognitive issues, as mine. Last night, I was feeling really rushed, and I was having a lot of trouble keeping my thoughts straight. I have not been good about keeping on my sleeping schedule. My spouse has been especially needy/demanding, this year, and they have also been having more trouble thinking things through, which makes them more emotional and more volatile.

So, to calm them down, I have been staying up later in the evening, watching television, and adapting more to their schedule, as well as their eating habits (I’ve been eating a lot more bread than I should, which is messing me up, because my body can’t handle the gluten/wheat as well as it used to). It’s great for them, but it’s terrible for me. And it wears on me, after a while.

I was feeling really pressured, and I said something that my spouse took the wrong way. They took a lot of things the wrong way, yesterday, for some reason. They’re feeling depressed and isolated and not that great, physically, so that’s an added stresser for them. And they take things the wrong way, getting all riled about things I say and do, which I’m trying really hard to not do wrong.

So, painful awkwardness ensued, and it took most of the evening for things to even out again.

Man, oh man, I cannot wait for Christmas to just be over.

Well, anyway… I’ve got a week and a half of time off ahead of me (oh, except for a few hours I need to work, next week, to balance out my vacation/work schedule). And I need to be especially protective of myself, my time, and my energy, while I’m home. We have a number of scheduled activities we have to go to — doctors and social gatherings and errands to be run — so I need to keep balanced, and keep my system in good shape.

That means exercising as usual, each morning. That means being smarter about what I eat and drink (making sure I drink enough water). That means being firm about the times when I got to sleep, and not being pressured to shift my schedule later, just because I’ve had a nap.

I felt sick all during the Thanksgiving holiday, because I wasn’t keeping on my sleeping schedule. And I don’t want to do that all over again. I’m feeling a little sick, right now, actually. I just have to get everything done. And then do it.

Could be, I have to call AAA to add air to that tire, since it might not be safe to drive on it. But I can easily do that while I’m taking care of everything else at home. I just call them, and they come. Or I may need to change the tire, period. Either way… as soon as I get back from my department store trip, I’ll have the rest of the day to sort everything out. So, onward and upward. I can do this.

I just need to be diligent about it, act like the adult I am, and keep my eyes on the prize — a wonderful week off, when I get to relax and actually do some of the things I never get to do, otherwise, while I have more than one hour of uninterrupted time to focus and concentrate.

Luxury. Pure luxury.

Okay, enough mooning about this. Time to get a move on and get this show on the road. I’m nearly there… I’m nearly there…

Concussion symptoms got you down, this holiday season?

head form of metal meshYou’re not alone.

The holidays can be tough for anyone who’s got extra difficulties, due to chronic illness. And with TBI / concussion, sometimes the worst thing is being around people who don’t understand what it’s like to have your life turned upside-down by a “mild” blow to the head.

As I’ve said many times, there’s nothing “mild” about a concussion or a traumatic brain injury. That momentary alteration of consciousness means that something “in there” got injured. And no amount of positive thinking or motivation or … consequences… is going to change the functional ability, unless you have adequate time to recover and rebuild your wiring.

You have to keep the stress down, to do that effectively. It takes time and practice and sometimes a bit of luck, to rebuild what you once had. And being pushed and prodded by people who don’t understand TBI or “get” why concussion can turn your life upside-down, doesn’t help with that.

The holidays can be stressful, to begin with. Then you add all the people, the expectations, the increased pace (a lot of us are racing to finish year-end goals at work, at the same time we’re shopping and figuring out holiday party logistics), and money pressures… and it just gets worse. Cognitive reserves that were already in short supply, get even less… and meanwhile, everybody expects you to KEEP UP! KEEP UP! WHAT’S THE HOLD-UP?!

Some of my own challenges have been:

  • Remembering what I’m supposed to do at work. I’ve forgotten a bunch of stuff I was supposed to do – and I even forget to write it down.
  • Dealing with depression. It comes and goes with me. This year, it seems to be coming more than it’s going.
  • Keeping cool with my spouse, when tensions get high.
  • Staying on my exercise routine.
  • Eating sensibly, and not “stuffing my face” with all kinds of candies and cookies. I’ve done well in terms of candy, because I can’t have chocolate (sets off migraines with me), but I’ve eaten more bread and cookies than I should.
  • Getting enough rest, and keeping on my regular sleep schedule. A tired brain is an irritable brain, and boy, do I get irritable when I get tired. I’ve had a hard time keeping on my sleep schedule, these past weeks, and I really have to concentrate on getting that sorted out when I’m off work next week.
  • Not pushing myself too hard. It’s easy for me to push. I know how to do that. But while it used to work okay when I was in my 30s, now that I’m past 50, it’s just not the same. I need to remember where I am… and act accordingly.

Basically, keeping myself together during the holidays is like an extra part-time job. It helps that I haven’t spent a lot of time socializing with friends and family. That takes the pressure off. But for many, many other people, they don’t have that option. And my heart goes out to them.

Still and all, it will be over soon enough. Just a few more days till Christmas, then another week till New Years (which isn’t much of a holiday for me, anyway). Then I can get back to my regular life.

And start the year fresh.

Onward.

Finally getting into the holidays

christmas tree
It’s a modest Christmas, this year

This holiday season has been quite different from past years. Both of us were too sick to travel for Thanksgiving, so we stayed home and ate turkey in the peace and quiet of our own company. It was nice. No yelling, no screaming, no wild flurries of activity and trying like crazy to catch up with family members we haven’t seen in a few years.

There really wasn’t enough time to do everything — and my side of the family has a bad habit of trying to cram everything into a few days, which is exhausting and disorienting and sets us both up for a whole world of hurt, when we travel on to the rest of the family.

We were also a lot shorter on energy, this year, than we’ve been in the past. My spouse’s mobility issues — severe pain and limited range of motion — make it next to impossible to get around easily, and the impatience of others doesn’t help. It’s not a total disability, but it’s a significant limitation, which others cannot seem to understand. My spouse looks and acts perfectly normal when sitting down and chatting, or talking on the phone. They’re not obviously cognitively impaired. So, somehow that gets into people’s minds that they’re really not that bad off.

And that’s a problem, in itself. Because then people expect unrealistic things of you, and they don’t treat you very well, when you just can’t keep up with the frenetic pace.

Anyway, that’s only half of the problems we avoided by staying home and keeping to ourselves, this year. The other half, is my anger, fatigue, frustration, and bad behavior issues, which have been flaring up, now and then. I seem to have a shorter fuse, this year, than in the past. I think it’s really due to my work situation, which is mighty “dynamic”, these days. There are layoffs pending in the not-so-distant future. And while I feel pretty confident about my own situation — not only am I getting along with my new colleagues better than just about anybody I know, but I’m also feeling really strong about my professional prospects.

I’ve come such a long way, in the past 10 years. It’s pretty amazing. 10 years ago, I was pretty much of a train wreck — spending money left and right, completely out of control with my behavior, my anger, my self-management.

And I had no idea why it was — or that it had anything to do with TBI.

Now I know better. And now I’m doing better.

It’s just other people’s “stuff” I need to deal with. There are a lot of worried, anxious people, and that makes them difficult to handle.

But for myself, my prospects are looking good, so I’m not worrying about it. Main thing, is taking care of myself, doing the best I can, and not letting the world around me bring me down.

So, I’m finally getting into the holidays. Dealing with them as they come… and getting my shopping and decorating done, a little bit at a time. It’s taking a few weeks longer, than in past years, but I’m not worrying about it. At least it’s happening. And the way I’m doing it all — measured and gradual and not stressing about it — really makes sense for where I and my spouse are at, right now. This time is one for me to be reflective and slow down, not get caught up in everybody else’s dramas. They can go on without me. I’m fine where I am.

From Ken Collins: When we injure our brain, we injure an important part of our body.

Piecing it all together
Piecing it all together

When we injure our brain, we injure an important part of our body. Our brains control our ability to think, talk, move, and breathe. In addition to being responsible for our senses, emotions, memory, and personality, our brain allows every part of our body to function even when we’re sleeping.

The brain can be hijacked by the Amygdala in the limbic system after our brain injuries as outlined in this source:

Wikipedia: Daniel Goleman speaks about Amygdala hiijacking – Amygdala hijack is a term coined by Daniel Goleman in his 1996 book Emotional Intelligence: Why It Can Matter More Than IQ.[1] Drawing on the work of Joseph E. LeDoux, Goleman uses the term to describe emotional responses from people which are immediate and overwhelming, and out of measure with the actual stimulus because it has triggered a much more significant emotional threat.[2] From the thalamus, a part of the stimulus goes directly to the amygdala while another part is sent to the neocortex or “thinking brain”. If the amygdala perceives a match to the stimulus, i.e., if the record of experiences in the hippocampus tells the amygdala that it is a fight, flight or freeze situation, then the amygdala triggers the HPA (hypothalamic-pituitary-adrenal) axis and hijacks the rational brain. This emotional brain activity processes information milliseconds earlier than the rational brain, so in case of a match, the amygdala acts before any possible direction from the neocortex can be received. If, however, the amygdala does not find any match to the stimulus received with its recorded threatening situations, then it acts according to the directions received from the neo-cortex. When the amygdala perceives a threat, it can lead that person to react irrationally and destructively.[3]

Goleman states that “[e]motions make us pay attention right now — this is urgent – and gives us an immediate action plan without having to think twice. The emotional component evolved very early: Do I eat it, or does it eat me?” The emotional response “can take over the rest of the brain in a millisecond if threatened.”[4]HYPERLINK “http://en.wikipedia.org/wiki/Amygdala_hijack”%5B5%5D An amygdala hijack exhibits three signs: strong emotional reaction, sudden onset, and post-episode realization if the reaction was inappropriate.[4]

Goleman later emphasized that “self-control is crucial …when facing someone who is in the throes of an amygdala hijack”[6] so as to avoid a complementary hijacking – whether in work situations, or in private life. Thus for example ‘one key marital competence is for partners to learn to soothe their own distressed feelings…nothing gets resolved positively when husband or wife is in the midst of an emotional hijacking.'[7] The danger is that “when our partner becomes, in effect, our enemy, we are in the grip of an ‘amygdala hijack’ in which our emotional memory, lodged in the limbic center of our brain, rules our reactions without the benefit of logic or reason…which causes our bodies to go into a ‘fight or flight’ response.”[8].

Understanding the role stress plays on triggering the limbic system fight or flight response is critical for people to learn about after our brain injuries. Brain injuries are often described as either traumatic or acquired based on the cause of the injury.

Traumatic brain injury (TBI) is an insult to the brain, not of a degenerative or congenital nature, which is caused by an external physical force that may produce a diminished or altered state of consciousness, and results in an impairment of cognitive abilities or physical functioning. It can also result in the disturbance of behavioral or emotional functioning.

A TBI can affect our ability to, think and solve problems, move our body and speak, and control our behavior, emotions, and reactions.
Acquired brain injuries are caused by many medical conditions, including strokes, encephalitis, aneurysms, anoxia (lack of oxygen during surgery, drug overdose, or near drowning), metabolic disorders, meningitis, and brain tumors.

Although the causes of brain injury differs, the effects of these injuries on a person’s life are quite similar.

This is why understanding about the consequences of stress on the limbic system after a brain injury is so important.

Understanding the Sympathetic Nervous System in the brain injury recovery process is seldom talked about to us after our brain injuries by doctors or health care professionals because they only treat the symptoms.

The following information is critical to understand and has great value for people with brain injuries and their families to understand.
The Sympathetic Nervous System – “limbic system is autonomic” and creates many problems people with brain injuries face during our recovery process. If people with brain injuries don’t understand the Sympathetic Nervous System and how it works – our family members and friends react to our emotions and unwittingly create more stress for us for us to deal with.

This stress triggers the “limbic system’s fight or flight response” into action.

We do not have any control over what we are reacting to because of the stress that is being generated by our emotions shuts down the thinking part of our brain – pre-frontal cortex.

What happens next is – we react and they react, the stress builds and we lose control, get angry and have emotional meltdowns or worse.
During any stressful situation our loved ones react to our “actions” and we react to theirs – which increases our stress during those hard and difficult times.

We (family members/ people with brain injuries and friends) get caught up in a reactionary mode instead of being proactive to keep the limbic system in check.

If we set up daily routines, have structure and find purpose and meaning in our lives we have a better chance of controlling stress and the situations that trigger the limbic system fight or flight response.

If we do not control the stress, our families and friends will constantly be reacting to issues we have little control over. Learning relaxation techniques like mindfulness-based stress reduction can help to stay calm so the limbic system is managed.

Mindfulness-based stress reduction can help with this and I encourage you to look this up on the internet because there is a lot to learn about this tool that can help us rebuild or lives after a brain injury.

After our brain injuries “emotional outbursts, anger, and memory issues” are an expression of the problems caused by our limbic system fight or flight response under stress. By understanding how our emotions can get out of control we will have a better understanding of why we react to things that don’t make any sense to us.

There is a reason for all this madness and by learning the role the sympathetic nervous system plays in our recovery, the better chance we have to live full and rewarding lives again – after our brain injuries!

“Nobody explained my brain injury to me”

lightning striking inside a headJust by total chance, a week or so ago, I found myself talking to someone who had a stroke in 2007. Unless they’d mentioned it, I never would have noticed. They’d had four months of recovery, then they got back into their life. And while we didn’t talk that long about it, I got the impression that they hadn’t gotten any help with really understanding their situation after their stroke.

When they ran into their neurologist at the hospital, a few months later, they got a tip about how certain things they were doing were just not very helpful at all. Things like beating themselves up, because they weren’t doing a good job at something… things like getting angry and upset about stuff going wrong in ways that were directly related to their stroke… The neurologist gave them some insight into what was happening with them, and a better way to deal with it.

It was good that they chanced upon their neuro. It’s just too bad they didn’t get that insight sooner, so they could relieve some of their suffering — maybe even prevent it.

But they were amazed that I’d been able to find help with my own brain injury. They asked a number of questions about how I recovered, how I got myself back, how I retrained myself in certain ways. They seemed downright amazed, that my path for the last 8 years had even happened.

And it left me both happy and grateful that I found this path… and sad and frustrated that they hadn’t — that thousands upon thousands… maybe even millions upon millions of people hadn’t.

Here’s the thing that gets me about brain injury recovery — there is so much that’s known, there are so many tips and resources and a wealth of information available about what happens to the personality when the brain is injured. But there doesn’t seem to be any uniform or standard way of communicating that to people. And so, we suffer. We really, really suffer. And it’s not just the brain-injured folks who suffer — everyone around us, especially our loved ones and those who are a regular part of our lives, joins us on the big proverbial float in our Pain Parade.

It’s actually pretty bizarre, if you think about it. TBI happens 1.7 million times a year in this country, alone.  Actually, according to the CDC,

In 2010, about 2.5 million emergency department (ED) visits, hospitalizations, or deaths were associated with TBI—either alone or in combination with other injuries—in the United States.

So, the 1.7 million number (which has been used for years, now) actually looks low. Add to that the numbers for stroke (nearly 800,000 Americans have a stroke each year, and 130,000 of them die from it), and other kinds of acquired brain injury (anoxic, for example, from losing oxygen to your brain), and you’ve got in the neighborhood of 3+ million Americans who have experienced a brain injury.

That’s just in this country. And that’s not counting all their family members, co-workers, community, and extended social connections.

Brain injury is a thing. It’s a big thing. And yet, somehow, we can’t figure out to tell people who’ve just had a brain injury, what’s happened to them, what they might experience as a result, and how they can take steps to recover?

This makes no sense.

And it makes me angry. Because a lot of people are suffering needlessly. Really, really needlessly. Just having the most basic information about brain injury helps so much. Finding out what happens during concussion or stroke — and then things to NOT DO (which medical professionals know about)… as well as WHAT TO DO — many of those things are simple and straightforward, and they all help a person make sense of their situation and chart a path forward.

Maybe it’s professional caution. Doctors don’t always know what to expect, and in any case, every brain injury is different, so every type of recovery is going to be a little different. Or maybe it’s lack of time. Or maybe it’s because doctors delegate education and training to rehab and therapy folks, who presumedly have a more extended working relationship with brain injury survivors. Maybe they want to limit their liability, in case their promises don’t come true.

Regardless of why that is, the fact remains, there’s a huge, gaping hole in the support of brain injury survivors — TBI, stroke, ABI, you name it — that seems only to be filled by people in the business of doing so. And from where I’m sitting, that’s a huge problem, because the profit motive becomes the most important thing. First and foremost, if you have to make money to survive, you’re going to focus on making money. And then you end up making a lot of choices that you wouldn’t necessary make (or have to make) otherwise.

So, the care you provide is necessarily compromised.

And the slippery slide begins… and continues.

Where does that leave the survivors? Or the people around them who struggle to understand what’s happening? Where does that leave the wider community who has lost the full participation of someone who is important to others, in large or small ways?

It leaves us nowhere. In no-mans-land. In limbo. Uncertain. Without a clue. And eventually, without hope.

A lot of lives are irreparably trashed, because of lack of support — even the most basic explanation of what’s happening… simply because someone couldn’t figure out how to explain a brain injury to the survivor, as well as to their immediate circle of family and friends.

How ironic, that advertisers can figure out how to explain and sell the most inane crap to just about anybody with a pulse, but nobody can figure out how to explain something as important as the logistics of brain injury to the people who desperately need to  know.

What a waste. What an incredible waste.