It’s society, not the injury, that can be the most traumatic

It feels like no one understands... and heck if you can describe it to them
It feels like no one understands… and heck if you can describe it to them

So, I’ve been thinking lately…

Brain injury is one of those injuries that we’ve pretty much always had with us. It’s been possible to sustain a TBI since time immemorial. Getting clunked on the noggin, falling and hitting your head, getting in fights, crashing your car/bike/wagon/sled, having something fall on you or run into you and knock you out — all those things have been happening to the human race for as long as we’ve been around.

It’s only recently that we’ve developed the awareness around how serious a concussion or TBI can be, and over the past 10 years, it’s become painfully clear just how bad for you it is, to repeatedly hit your head against something. CTE in football players (of all ages)… in soccer players, hockey players… to an extent that now appears to rival dementia pugilistica in boxers. At least in terms of press and public attention.

And of course there is the signature injury of the Iraq/Afghanistan conflicts — TBI and PTSD. It’s no joking matter. It’s also not exactly new. I’m not downplaying the seriousness of it, however for ages, soldiers returning from war have been seriously messed up. My father-in-law, who fought in WWII and came back a raging mess (and turned many members of his family into messes in the process), was a prime example of what war does to your brain, your behavior, your relationships. He was a great man, no doubt, but to say he was “haunted” would be an understatement.

My question is this: If TBI has been around since the beginning of time, how is it that it messes us up so much more now? Because it seems to. It really does. My own “minor” TBI in 2004 almost ruined me. I nearly lost everything. And over what? A fall down the stairs, when I smacked the back of my head 3-4 times really hard? Plenty of other people (including the author of “The Ghost in My Brain”) have relatively “mild” concussions, but find their lives turned upside-down, even ruined.

And life after a TBI becomes even more traumatic than the injury itself, in many, many ways.

So,what’s different now than before? Something must be.

I think it’s a combination of things — people are different now, and our bodies are much less used to taking physical beatings than before. We also have far fewer institutional guidelines of how to behave and relate to each other and the world, that tell us what to do and if we’re doing it correctly. Once upon a time, there were commonly agreed-upon moral codes that everybody followed. You didn’t have to figure everything out for yourself, and it was clear if you were not falling in line — so you did. And I think that actually made it easier for TBI survivors to figure out how to fit in. The lack of physical strength and resilience, plus a lack of hard and fast social guidelines, make TBI recovery a tougher journey.

Plus, we live in a world that’s a lot harder and faster and stronger than it used to be. We drive our cars faster. We play our games harder. We have all sorts of artificial, chemical, and mechanical enhancers to make it so. But we ourselves are physically weaker and less well-conditioned all-around.

So, there’s that, too.

But I think the one thing that makes TBI recovery the hardest, nowadays, is the rigidity and brittleness of society. Gender roles are more clearly divided than ever before. Even with all the “alternative lifestyles” folks in the mix, the distinction between who is perceived as “a man” and who is perceived as “a woman” is clear and unwavering. Girls have soft pink toys that are usually about dolls and homemaking. Boys’ toys have to do with war and hard sciences.

As adults, our lives are expected to be a certain way — we’re supposed to have a regular job, making decent money, live in a respectable neighborhood, where we raise a family and do the whole mainstream thing. We’re supposed to be on Facebook. We’re supposed to text and tweet and share photos on Instagram. It’s not negotiable. If you don’t participate in things like fantasy football, put your kids in youth sports or dance classes, pursue various volunteer activities supporting the charity of your choice, and use catch-words like ‘positives’ and ‘negatives’ and ‘maximize’… well, you’re “out”. You’re not part of the action.

And that’s supposedly a bad thing.

If you choose a different way — drift between jobs, changing up every couple of years or so… make so-so money at one job, make really great money at another, not staying on an “earnings trajectory” that takes you up-up-up… you don’t have kids, or if you do, you don’t bring them up the way everyone else does… you don’t go to the holiday parties or sign up to help remove invasive species from the local waterways… and you use words that are definitely not catch-phrases, well, people don’t quite know what to do with you.

And that makes a TBI survivor even worse off than ever. Because after you hit your head and get hurt, you can’t always do the same things that everyone else is doing. Sometimes you can’t handle the noise or the lights or the crowds. Sometimes you lose track of time. Sometimes you just don’t have the energy to do anything at all. Sometimes you lose your words between when they’re in your head and when they come out of your mouth. So, you’re out.

And when you’re out, you lose your support. You lose your contacts. You lose your connection with the things that used to make you who you are. You lose the identity you have with those people. And you lose the opportunity to interact with others and modify your behavior in ways that make sense to you and to them.

The thing is, people can be so brittle. They can be so afraid. The littlest thing will set them off, and they push away people who make them uncomfortable. Even wearing your clothing a little differently than expected can freak people out.

So, where does that leave us? Personally, I think people need to loosen up. They’re too tightly strung, too intensely wound up. In the end, you learn that all the worry and all the concern over details and minutiae just distracts you from what really matters, and you reach the end of your days, wondering “What the f*ck was I thinking?”. I know what you were thinking — just like everyone else, if you don’t get with the program, you’re going to be kicked out. You’re going to lose everything. And it’s not going to be pretty.

We can’t have that.

Of course, there’s  nothing you can do about the behavior of others, so what’s a TBI survivor to do?

First, you can cut yourself a break — your brain’s been injured, and it needs to heal. Like healing a bone or a bruise, you need to rest it, give it proper nutrition (and water)  and not do things that can hurt it again.

Second, rest assured that your brain will change over time — our brains are constantly changing, in contrast to what the narrow-minded, unimaginative, ideologically domineering dinosaurs of the medical profession have told us for the past 150 years.  We learn, don’t we? (Well, some of us do, anyway.)  Learning and adapting to changing conditions is all part of our brains changing.

Third, know that you can change your brain in ways that make sense to you — and that you want it to. The brain changes in connection with its environment — and we have at least some control over that. We can choose where we go, what we do, who we are around. Of course, it can be both a very long process — it’s taken me ten years to get to a point where I feel like myself again on a daily basis — and a very quick one. I’ve had sudden leaps ahead for no apparent reason.

Lastly, the rest of the word isn’t necessarily going to cut you a break, but you can give yourself the break you need. It’s not easy to become self-sufficient, but that’s what a lot of us have to do. Socially, mentally, emotionally, logistically self-sufficient. Because the rest of the world doesn’t do a very good job of dealing with us, and it’s well nigh impossible to communicate to them what we’re experiencing and what we need.

It’s all a tall order, of course. And not everyone can manage. It helps if you have at least one person in your life you can talk freely to, to work through your issues and come up with better alternatives and “patches” for when things break down. But not everyone has that.

It is ironic, isn’t it? The very people who could use some extra help, can’t really expect it.

It makes me tired, just thinking about it. So, that said, I’ve got some stuff I have to do.

Onward.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

8 thoughts on “It’s society, not the injury, that can be the most traumatic”

  1. From a historical standpoint, there are two things to consider. These are changes that have happened in US society that affect how well we cope as individuals and families.

    (1) 1950 was the first Census in which most Americans reported living in cities. Prior to 1950, we were a country of small towns and farms. In the small town/farm environment, families stay together and neighbors know each other and help each other. What we find quaint and appealing in rural New England and Amish communities was the norm for much of the country. In 1940, 24.7% of US households contained three generations of a family. This declined to 12% in 1980 and gradually has been creeping back up (18.1% in 2012). There are three trends contributing to this: (a) financial burdens faced by 20-somethings that force them to move back in with parents; (b) the high cost of elder care, which encourages parents and grandparents to want the young to move in with them and (c) decreased economic and social mobility encouraging people to stay where they are rather than move to find something better elsewhere. (Pew published several articles about multi-generational families in 2014. All of the data are from the Census Bureau.)

    Basically, in that environment, if you had a problem, the people around you would know about it, know the reasons why, and help you. That remains true in a few places in the US, but its rare. These’s a reason why populists emerge from places like Vermont and Wisconsin and not from Texas or Arizona or Mississippi.

    Europe was heavily urbanized long before the US. What some conservatives like to brand as socialism may simply have been a realistic response to fulfilling the needs of citizens that families no longer can handle in an urban world. Their response here is to let those needs go unfulfilled and let people suffer.

    (2) People live longer. Medical technology enables people to survive accidents that would have been fatal in the past. It can take years for some TBI issues to emerge, but people now have those years to allow the issues to show up.

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  2. Very true. The context is hugely important, and I think that the rural vs. urban contrast has a lot to do with things. I was raised in a rural area, with grandparents who grew up in a time and place where the closest medical help was a day’s wagon ride away. So, there’s a strong element of self-sufficiency in everything I do and think. I was raised with strong-strong guidelines on Right and Wrong, with an emphasis on character and overcoming “sinful natures”. The combination of religion with a lack of understanding about how the brain actually works, was challenging, to put it lightly.

    If there were a way to take the strong guidelines and combine them with accurate medical/scientific knowledge and compassion, it might make a positive difference.

    Not holding my breath, however.

    Thanks for your thoughts.

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  3. What you said above reminded me that I was trying to talk about this with a friend yesterday. I was telling him about my husband’s latest doctor’s visit and how my husband might have to have surgery, but how hard it is to decipher all the information and if surgery is in the mix, I want to understand the “whys” and “ifs.”

    Doctors have suggested surgery for me when my issue was a corn allergy, so I have to say I don’t trust them. I just don’t. My husband is relying on me to help him figure this out.

    But, anyway, my friend totally clinched up. All of a sudden he was “very sorry.” It was like a black shroud had descended on us. I didn’t want his pity! I wanted to bounce around some ideas. I feel like I’m in a tunnel here all by myself. So I agree. People need to loosen up a bit. It’s hard. I know. What do you say to someone who has a serious problem? Our culture is built around living the perfect life and never having any problems. My mother-in-law actually believes that when a person has a problem, it is punishment from God. Nevermind that she was terribly sick all last summer.

    Even without a knock on the head, people’s brains don’t always work so well. Logic isn’t on our side. 🙂

    Thanks for your blog! Terrific research and posts.

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  4. Oh, you must have hit a nerve… I wonder what set him off? Maybe he had some head trauma he’s just now remembering? Or he’s just reached his limit? Bouncing ideas off people, when it comes to brain stuff is well nigh impossible, sometimes.

    It never ceases to amaze me, how easy it is to put off some people. When I told my parents about my TBI issues, they freaked. My dad actually ran into the other room and cried. Please. I was sitting right there, and all I was doing was explaining why I was such a pain in the ass over the years — and also letting them off the hook for being “bad” parents. But people have antiquated understandings about what makes us tick — including the brain. So, you take your chances, when you talk to anybody about the stuff.

    I’ve also been thinking about a conversation I had, a few years ago, with a former high school teacher of mine. We really hit it off when I was in school, and they were the one teacher I could relate to, in a sea of faces that cared about nothing other than fitting in and being as comfortable in life as possible. We kept in touch over the years, and we were friends on Facebook for years. The last time we connected, we met at a local coffee shop, but when I got there, I didn’t see them — the view to them was blocked by a table full of loud people who were very busy being big and important. So, I sat there for 15 minutes — dumbly — till I got up and walked around… and then my teacher saw me and hailed me. They seemed a little put off that I had not seen them, as though there were something wrong with me. (In all honesty, I was dense and dull that morning, but no more than usual early on a Saturday morning while visiting my family.) We talked for a bit about this and that, and they told me a little bit about a fall they had when they hit their head really hard, were dazed, and had to go to the hospital. I had heard about it through the grapevine, and I wanted to put their fears at rest, because they seemed very nervous about the possible after effects. Now, mind you, I had told them Nothing about my mild TBI history, so there was no reason for them to think there was anything amiss with me (although if you knew what to look for while I was in high school, the signs would have been all over me, like brand labels on a NASCAR driver). I told them about the one time when I was in a 7-car fender-bender, and I temporarily lost my ability to read. That’s it — just my ability to read. Not my concentration, not my behavioral control, not my ability to do anything for more than a few minutes. All those were casualties, as well, but I didn’t want to freak them out. And I also wanted to reassure them that things come back. Before long, I was reading again (at least, back in 1997 I was).

    By the look on their face, you’d think I’d told them I’d lost my spleen, a kidney, and been crippled from the waist down. They really got freaked out. Shocked. Shocked, I tell you. And after that, they treated me… well, different. They became a lot less chatty on Facebook, and eventually they unfriended me. They also quit suggesting we connect when I visited my parents over the holidays.

    I don’t want to be all suspicious, but everything was fine, until I mentioned my head trauma experience.

    Like I said, some people are really easily put off.

    Ha-ha-ha — surgery for a corn allergy! That’s priceless. Great business for the surgeons, of course.

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  5. The discomfort that some people have may be due to their own feelings about themselves. There are people running around in denial that they are vulnerable and that this stuff could happen to them. When forced to consider that idea, they are about as happy as a lobster in a boiling pot of water. They shut up, and perhaps they feel superior because what happened to you clearly can’t happen to them.

    There are massive numbers of people who don’t save, don’t take out insurance, don’t write wills, do arrange trustees for minor children, etc., because they are convinced that nothing will happen to them — and perhaps the act of writing the piece of paper will cause something to happen to them.

    Sigh. I know you can’t fix stupid, but I sure wish it were possible.

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  6. I have a theory that a ton of human behavior actually is decided in a pre-consious-thought stage, where our instincts to flee danger determine the direction of our activity — even before we’re consciously aware of the perceived danger. Even the smartest people can turn into idiots, thanks to the efficiency of the autonomic nervous system. And yes, it’s well nigh impossible to fix that brand of stupid.

    It’s a theory.

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  7. One cannot understate the importance of denial as a way of coping with life’s uncertainties. If one started saving for retirement at age 18, virtually everyone would be a millionaire by age 65. But who does that?

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