I’ve been thinking a lot about why I keep this blog. Someone who’s been a reader here for a while has commented that I spend too much time over-analyzing and thinking about brain injury, and that I should just be thankful for what I have, live my life and get on with it.
That’s been a challenge for me to digest, probably because there’s some truth to it. It’s partly true that I do spend a lot of time thinking about brain injury and how it affects me, and sometimes it keeps me from just living my life. At the same time, one of the driving forces behind keeping this blog is the deafening silence out there about brain injury, from a personal point of view. When I first came to terms with the fact of my history of TBI, it was all but impossible to find *anything* personal about TBI — there were just a bunch of “scientific” sites, many of which were selling or promoting something — with objective, impersonal information.
And I felt completely alone.
I still feel alone, but a lot less so, since I’ve been blogging about TBI. Something about just writing this all down and putting it out there, is not only cathartic but also helps me put things in perspective. I don’t have many friends or social interaction outside of work — I get too tired to maintain friendships for any length of them. And I don’t keep in regular touch with my family, in part because they exhaust me with their attitudes and their choices and their drama.
More than anything, fatigue has changed the face of my life, since I fell down those stairs in 2004.
And there doesn’t seem to be any relief in sight.
But I digress.
One of the things that a few people are saying that I really agree with, is that it’s not concussion/TBI that’s the problem. It’s mismanagement of concussion/TBI that gets us in trouble.
The Concussion Blog is one of those places where this is talked about. The blogger/author there talks about management from the perspective of an athletic trainer. And I talk about managing TBI/concussion from the “inside” — the personal perspective of someone who is dealing with TBI on a regular basis. I do this because I want to demystify the world of concussion/TBI recovery and put human face on something that usually pulls people into the shadows to hide “until they’re better”, which doesn’t happen nearly as often as we’d like.
When it comes to TBI, there are tremendous stigmas attached. Not least of which comes from inside our own heads. We become different people. Our lives can be turned upside-down. It may look like there is no end in sight, and we can lose hope. Simple fact of the matter is, it is not easy, dealing with TBI, and that’s just a fact we need to accept and work with.
For many, this can be tremendously unsettling, and we may want with all our might to just put it behind us and get on with our lives, not worrying about what was before, but trusting that we will get the help we need as we go on. That help may be from within, from God, from family and friends, or from an agency or rehab. We don’t want TBI to stop us, and we want to just have the best life possible, without staring at our navels all day long.
For others, the many phenomena around TBI may be a source of fascination, even compulsion — some might say obsession(?). When something nearly takes you out, and it’s so big and undeniable, it can be a source of intense scientific interest. Sometimes people turn to studying the very thing that nearly killed them — like people who have close calls with snakes or sharks or other threats as kids, and then become scientists who study them. I fall into that category — especially because I was raised around scientists and I grew up spending a lot of time with my grandfather, who was a college professor in natural sciences.
For other people, they may never be able to put TBI behind them, and they may struggle for years and years — alone, misunderstood, discriminated against, and marginalized… and never fully understanding why. It’s my hope that some of what I write reaches those people and helps them feel less isolated and alone. Life can be rough on all of us, and TBI folks especially.
The biggest problem that I can see is the isolation and the feeling that nobody understands you, nobody can help you, nobody gets it, and you’re just a freak who’s good for nothing. When you feel that way, it’s easy to let others marginalize you and mistreat you, which does not help your ability to self-advocate and get the help you need. And it just feeds the vicious cycle that pulls us into the progressive downward spiral of TBI. So things can get a lot worse, before they get better. If they get better at all. What happens inside our souls after TBI, can be even more harmful than what happens inside our heads.
So, if I come across as egotistical, self-consumed, and perseverating… it’s all in the interest of being real about my own condition. I don’t want over-analyzing TBI to stop me from living my life — and in fact, it doesn’t — but I also don’t want to pretend that everything is hunky-dory and there are no issues in sight. For years, I was totally focused on barrelling through all the hurdles along the way and leveling every barrier to my success. But lately, I’m just too tired to keep up that charge. And I’ve got to get real about my situation.
So, that’s it for today. I hope it has done someone somewhere some good.