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

Posted Mar 01 2010 12:00am

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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