Once we’re aware of brain injury… what then?

One of the things I hope happens during this month — March is Brain Injury Awareness Month — is that TBI awareness doesn’t “dead end”.

What I mean by that is, I hope that in learning about brain injury, tbi, head injury, concussion… whatever you choose to call it… people don’t reach the conclusion that a brain injury is The End of the Line for people who sustain one.

Proof that this can’t possibly be true, all across the board, is the fact that Every 21 Seconds, someone in the U.S. suffers a traumatic brain injury.

1.5 Million Americans suffer a traumatic brain injury each year.

And those are just the ones we know about.

There are very likely many, many more individuals who sustain head injuries (or concussions) and either never fully realize it, or who say nothing about it, don’t report it, don’t seek medical assistance, etc.

Now, I don’t know about you, but that sounds like an awful lot of people. Which means, there are a whole lot of folks walking around with a history of head injury. And it means that this “silent epidemic” as some folks are calling it, has a substantial presence in our lives, whether we like it or not.

And although this silent epidemic is a serious one, from where I’m sitting, it’s not catastrophic. It doesn’t need to signal The End of Productive Life for survivors. And it certainly doesn’t necessarily mean that we TBI survivors are all disabled or incapable of getting on with our lives.

Now, I’m playing devil’s advocate here — and it may seem out of character, because I’ve devoted a fair amount of time and energy to raising awareness about the difficulties that come with TBI (especially “mild” traumatic brain injury, or mTBI). I’ve spent a lot of time talking about my difficulties and challenges and things that hold me back and get in my way. I’ve really wanted folks to get a sense for what it’s like to deal with TBI on a daily basis, not sugar-coating it, and not hiding the warts and bumps and foibles and screw-ups that beset me along the way.

I’ve taken the liberty of saying things here and voicing opinions that are clearly the results of my issues — temper tantrums and tirades and poor-me bitching and moaning. I’ve been as honest as I can be — on purpose — because that’s a side of this condition that needs to be acknowledged and reckoned with.

At the same time, though, I also want this blog to show how, despite these challenges and problems, it is possible to overcome them. With the right strategies and the right outlook and the right tools — and the right self-awareness — you can overcome mild TBI’s challenges and get on with your life. You can even overcome a more severe TBI — I may have had a more severe one that I originally thought, when I was knocked out by that rock when I was 8 years old (but I don’t remember how long I was knocked out, and I didn’t get medical assistance that could identify what the real story was with me, back then, so I’ll never know for sure just how severe that injury was — for all I know, my brain might have swelled or I had a bleed, or something like that, but 35 years after the fact, any evidence of that didn’t show up on the MRI or EEG).

TBI doesn’t have to be the end of the line. Concussion, either (and let’s use those terms interchangeably this month). A head injury may sideline you for a time, but it does NOT need to become a permanent, life-threatening condition that plunges you into chaos and desperation. For some people it may be that, but there is no rule written in stone that says that TBI is the end of the road. While the organizations and research facilities which are seeking funding and want to get the public’s attention around TBI may resort to dramatic accounts to get people’s attention and get them to take this national health issue (note, I am not saying “crisis”) seriously, as an individual I am saying that TBI can be survivable. And it does NOT need to permanently derail your life.

Now, I know the dangers of giving people false hope. Sometimes an injury is a permanently disabling one. Sometimes there’s just no chance of getting back certain functions and abilities. Sometimes the brain is just “done”  in places, and the things it used to do, are things of the past. For people in that situation, I feel a great deal of compassion. Not pity. Compassion. They are in serious need of help — especially when their injuries have come as a result of serving their country, and their TBIs have left their spouses and kids and other family members with a huge gaping hole where their personality and presence used to be.

That’s a terrible, awful situation, and those folks need all the help our nation can offer.

But when it comes to Brain Injury, there is no set-in-stone rule that says a certain outcome is 100% predictable. There is no 100% certainty that a certain type of injury will result in a certain type of effect. Everyone is different. Every brain is different. We’ve got our genetics, our physical fitness, our personal expectations, even our individual character, to factor in. We’ve got past training and conditioning — physical, mental, spiritual — to consider, as well as the amount of support we receive. And then there’s plain old grit and mettle…

What happens to one person and results in certain after effects, can happen to another person and result in something completely different. It’s not an exact science, and there are as many unpleasant surprises along the way, as there are pleasant ones. There are no guarantees, and there are no unassailable absolute rules about TBI that say if such-and-such happens, you can expect such-and-such to occur.

Each head trauma survivor, and their family and friends, have to find out for themselves what is truly possible for them.

But while we’re learning about the issues and problems and difficulties and challenges, let’s also keep in mind the possibility that there is much, much more we have to learn about how much recovery is truly possible. For all we know about brain injury, right now, there’s a ton we don’t know. That goes for the brain, itself. And in this day of medical and scientific expertise, where trained professionals with “qualified” backgrounds are doing their utmost to help us feel more secure by being their expert selves, it would do us all some good to keep in mind that their demeanor and their outlooks are parts of roles they play — as experts, they must necessarily appear strong and confident and authoritative. Which opens the door to following them blindly down roads where the surface is not paved nearly as well as they would have us think.

And it can also close the door to other possibilities — the possibility that they might be wrong about how the brain works and how it heals. The possibility that they may be wrong about what the human spirit is capable of doing. The possibility that they may be looking in the wrong places for some of their answers, and that they might be discounting valuable information and experience that others can use, because it’s not part of a double-blind peer-reviewed controlled experiment conducted under tightly monitored conditions.

March is Brain Injury Awareness Month, and my own personal contribution to the collective awareness is this: Just because you sustain a brain injury doesn’t mean your goose is cooked for all time. There may be some things you have to let go of — like that go-go-go lifestyle that kept you from paying attention to your whole life. There may be some changes you need to make — like exercising regularly, or taking some meds to keep yourself cognitively engaged. There may be some challenges you cannot shake — like constant headaches and all-over general aches. But everybody has something they have to overcome. It comes with the human territory. And for every one thing that we have to let go of or adjust away from, there are about a million other things we can do or pursue, to take its place. Just because you can’t do ___________, doesn’t mean you can’t do _____________.

The world is bigger than that. And so are we.

Awareness of Brain Injury is just the first step. And it doesn’t have to be the last. There are millions of people who are dealing with the after-effects of TBI, years after the fact, and not all of them have been rendered incapable of living their lives. How well they recover and move on with their lives depends on myriad factors, not least of which is character and the strength of the human spirit. It’s not all about the brain. It’s about the mind. The body. The heart. The soul. The brain is one piece of the equation — it’s an important piece that cannot be disregarded. But it’s not the only piece.

This is important information. It’s critical. And it’s vital that we not lose sight of the whole person, when we look at TBI survivors. Each person has their own personal “constellation” of abilities and limitations. And each person has a choice in how they approach them. We TBI survivors may not have the same faculties as we had before our injuries, and we may not have the same faculties as others, but we are still very human and we are still very much alive, and that in itself should count for something.

That being said, during Brain Injury Awareness Month, I am really hoping that more of a conversation can emerge about the nature of brain injury, and we can hear more stories of recovery. There’s always the danger, I suppose, of successful recovery stories convincing people that brain injury is not that big of a deal, and that all you need is time and rest, for things to get back to normal. That’s not how it works. I’m not sure it works that way for anyone, brain-injured or not. Likewise, there’s the danger that showing the lives of people who were brain-injured who never fully recovered will tell people that once your brain is damaged, it’s the end of the line for you. That’s not how things have to work, either.

It’s more complicated that that. More complex. Perhaps more than can be handled and addressed and discussed in March.

Well, at least this is a start. The month is just beginning, and there are 30 more days in which to talk about all this.

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.

3 thoughts on “Once we’re aware of brain injury… what then?”

  1. BB

    I hesitate to say that one can ‘overcome’ mTBI. TBI does not go away, although there is neuroplasticity and some neuroregeneration brain cells die and they die – that’s it. With them dies some functionality or processing or something. There are a range of compensations and the brain IS very flexible but there are no hard and fast rules. Every brain injury is different, every person loses different cells, started with a different base. Multiple injiuries, injuries when you are older, injuries from sports or IEDS or accidents or anoxia – they are all different with different outcomes. I had a friend who had cancer and she would get furious if someone said ‘With a good attitude you can overcome this’ – she had a great attitude but cancer is cancer. Not everything can be overcome. BUT that doesn’t mean you can’t have a life. For some folk it may be much harder – that’s real, not only because of their injury but also because the laws, and attitudes of many people do not support survivors.

    Brain injury awareness is many things – both knowing more and understanding more but also asking deeper questions. For survivors it is sometimes about effort and desire but it is also about what makes life ‘good’ and what constitutes self, for others it is the relationship of community to the individual, of recognizing what all people have to give and the importance of that – but even more to realize that we are more and more separating the world into two classes – turning it into an arms race about where to ‘succeed’ one needs money, speed of processing, indifference and a tactical, cold, self centered way of interacting. What value is there in someone who is slower, or thinks differently?

    There is more I want to say but have to go for now…

    M

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  2. I guess it depends on your definition of “overcome”. I tend to define it as living a life that’s bigger than my problems… not letting it get the best of me.

    If you think of overcoming in terms of completely conquering the condition itself, then I probably agree with you.

    But when I think of it, I tend to think in terms of overcoming the wide array of effects which can be psychologically and emotionally debilitating, if I let them get the better of me.

    In that sense, I do believe it can be overcome. Some folks, of course, are in such dire straits, that overcoming is not much of an option for them. But even the worst of circumstances don’t necessarily mean you have to surrender to it.

    I’d like to step away from the idea that our success depends on external forces… support from others… laws… attitudes of others. Just for a moment, let’s step away and imagine a world where we can find all the resources we need within ourselves to prevail…

    … hmmmm …

    Okay, now we can go back to the other world, where we’re at the mercy of external elements.

    But wasn’t it a relief (or perhaps it was a bit frightening?) to contemplate the idea that we actually have the seeds of successful TBI recovery within us?

    Like

  3. This is a very good point but I need to think it through to respond -TBI you know 🙂 – it deserves a thoughtful reply becasue there is much validity in what you say…but very overloaded tonight and so I need to redirect my thoughts till tomorrow am……

    Like

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