I’ve been scouting around the web for the past month or so, looking for information on TBI, and finding a whole lot of it. Much of what I’m finding has to do with recent TBI victims/survivors, but not a whole lot of long-term survival/thriving information. Or maybe I’m just looking in the wrong place…
Anyway, since I’m both a long-term TBI survivor, as well as a re-injured individual (I had a fall in 2004 that turned my life upside down, slowly but surely, without my realizing what was going on, until the damage was done), learning and reading and talking about long-term coping strateties and rehab approaches is of particular importance to me.
Sadly, I’m not finding a lot of them. But long-term survival (and thriving) stories are so critical to read — especially since so many people are turning up with TBI, and they’re being told any number of things from “You’ll never walk or talk normally again” to “Get used to being a vegetable.” It’s a shame and a bit of a crime… people need hope! People with TBI’s need to know that there is life after head injury, and that they don’t have to live a life of disability and disadvantage.
I suspect that the reason there’s not more information about long-term TBI survival out there, is because TBI is a relatively “new” area of study, and a lot of us who have been living with TBI’s all this time, have — in a way — “gotten over it” and gotten on with our lives, despite our initial disabilities. I can’t speak for anyone else, but I when think back on how much I had to struggle through — the social difficulties, the impediments, the ringing in my ears, the confusion, the frustration, the anger… all of it — I would just as soon think about other things, like my almost-normal life. I’d just as soon not rehash all the hassles I went through.
To make matters worse, when you’re going through initial TBI coping/survival all on your own, you’re so often dreadfully unclear about what it all means, and you can’t quite sort things out in your compromised head, so the early stage fact-finding that’s happening now with Iraqi Operation vets hasn’t really taken place on the organized scale in the lives of long-term TBI survivors.
Plus, I think another factor that plays into it all, is that much of the work around TBI (that I’ve found) is being done with relation to the US military — a good deal having to do with operations in Iraq over the past couple of decades. So, a lot of the findings and work being aggressively pursued seems to be in the domain of the Veterans Administration and military-related treatments. Which separates it from the civilian population.
Another issue could be the fact that the organized medical establishment is taking a closer look (than 20 years ago) at TBI diagnosis and rehabilitation, and the literature that’s coming out of those studies is specialized and medically technical in nature. So, the really in-depth material is a bit unapproachable for regular folks.
At the same time, the people who are personally and individually affected by TBI — survivors and their families — are totally tapped out, trying to get by and adjust to all the changes… breaking up, falling apart, struggling to keep things together, exhausting themselves, isolated (and isolating) in their own personal dramas, and living day-to-day just dealing with simple things that used to be so… well, simple. But aren’t, anymore.
TBI is a bear of a conundrum, also, because it’s so varied. No two brains are alike, and TBI’s tend to be individual and varied, too. From mild TBI to severe, from the part of the brain affected, to the personality (before and after) of the survivor, there are so many different factors that it’s pretty well impossible to make broad generalizations about TBI survival. Except that it can be a real challenge, and it can last a lot longer than the people affected feel they can deal with it.
I suppose I’m somewhat fortunate in that I sustained my injuries without any awareness of what they meant. Of course, it can be terribly frustrating and frightening to have no idea why your life is falling apart… but in the same vein, not knowing that I was “damaged” made it possible for me to continue living my life without the perceived limitations of a TBI. I’m not sure I could have made the same progress in learning social skills, learning how to learn, correcting my writing, acquiring anger-management abilities, and basically accumulating all those “normal” skills that didn’t come naturally to me, if I’d been saddled with an identity of a TBI-survivor. I think that would have been absolutely devastating to me as a kid.
Now that I’m grown, it’s a different story. I have a history of successful rehabilitation and recovery behind me (even though I have had setbacks and I continue to struggle in some respects). I have a lifetime of coping — successfully and not-so-successfully — with the particular pecadillos of TBI, that inform my life choices on a daily basis. And now knowing that my head injury was the cause of so many different problems I really struggled with but couldn’t explain, now relieves me (well, it’s starting to relieve me, anyway) of that nagging sense that I’m inherently flawed, that I’m a bad person, that there’s something wrong with me.
I’m not a bad person. I’m a survivor of a brain injury. And knowing that makes all the difference.
I can stop being so hard on myself for every little thing, now. After 35 years, it’s about time 😉
But enough about me. So, what do you do if you’ve sustained a traumatic brain injury? What indeed? There are things you can do, to get back on the good foot again!
- Look around online and read the valuable information at many websites. There’s nothing like a web page that you can come back to, time and again, for repeat reading and clarification. And printing out information to review when you’re less stressed or have more time to digest it, is very helpful.
- Contact a local Brain Injury Association chapter and obtain information from them. It’s their job to help people like you, so give them a reason to exist!
- Keep track of your experience and compare notes with others. It can be really helpful to see that you’re not alone, that there are others who are “worse off” than you… or who have had similar experiences and reactions.
- Find TBI survivor blogs and read about others’ experiences. Posting comments and words of support and making contact with others like you can alleviate your isolation.
- Reach out to support groups or other professionals, like counselors/therapists. Just find someone to talk to, who’s outside your personal sphere of influence, so you can say what you can’t say to your immediate family… without threatening your home stability 😉
- Be patient. This all takes time, but things can sort themselves out. You just have to keep at it. I can personally testify that there is always the chance that you will recover far more than others expect. And hard work pays off. When the going gets tough, keep your head down and keep plowing at it — your efforts won’t go unrewarded!
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