I’m reading a paper written in 2010 by a sociology student called How Memory Affects Sense of Self: Stories of Traumatic Brain Injury. I haven’t gotten far, yet, but it’s pretty good. It’s a different sort of “read” than the published scientific papers I’ve been reading, and it’s interesting to see how someone well outside the field of neuropsychology or psychology or neurology, who’s just encountering TBI for the first time, experiences TBI survivors.
One of the things the author mentions is the use of the word “survivor” instead of “victim”. She talks about the folks in her study as “survivors”, because it “is more empowering and positive than ‘victim’ which sounds like something to be pitied.”
Aside from empowerment, I believe there’s an important difference between the ideas of “victim” and “survivor”. And I’ve been thinking that there’s even something beyond that, which is worth considering. I’m not sure if there’s one word for the “beyond-survivor” idea, but I still need to consider it.
These three concepts – victim, survivor, beyond-survivor – all have to do with experiencing a debilitating event. And the first two are all about the event itself. In my case, I’ll talk about TBI, although there have been a number of other debilitating events that knocked me for a loop. Job loss, relationship loss, financial catastrophes, losses of loved ones, a variety of injuries, and so on. They all set me back, and all of them victimized me in some way. And yet I went on living my life.
To me, being a Victim, is about saying, “Something really terrible has happened to me, and it’s so terrible, I have to stop living parts of my life, because the injury took it from me, or I’m way too gun-shy to put myself out there again. I’m safer inside, where my world is smaller, but I feel safer. And f*ck anyone who tries to pull me out of my shell. This injury is permanent, and I have to manage its danger for the rest of my life.”
Lord knows, I’ve been there. Right after I got hurt in 2004, I didn’t know why things were so screwed up, but I knew they were. And I was living unconsciously as a Victim, building my life around all the problems I was having, without a really clear view of what those problems were. I had no idea how to fix them. I didn’t even realize the nature of them, or understand that a lot of them could be fixed. I was living as a Victim. Just half a life — if that.
Being a Victim is about putting the injury at the center of your life, and living your life around it. We can easily make ourselves into Victims, by holding ourselves back from living to the fullest, because of how we think about the injury, how we think about ourselves, or what we believe is possible after the injury has passed. Being a Victim, to me, is about letting an injury define you and limit you, so that you are living less of a life than you otherwise could.
In some cases, the injury is so severe, it’s impossible to NOT be victimized by it.
And yet, that’s where being a Survivor comes in. A Survivor, in my mind, is someone who says, “Yes, that injury happened, and yes, it truly sucked more than words can say. It beat the stuffing out of me and almost took me out… but it didn’t win. I’m going to live my life, no matter what.”
After I got a clue about my TBI (and all the others I’d had before), and I realized that I could change things, I started living as a Survivor. I was someone who knew that something terrible had happened to me, and I had really taken a hit from it. But even if I wasn’t living as large as I wanted to, I was still moving towards positive changes, still enlarging my life, still building my capabilities, still working each day to be better than before.
TBI still factored into my life, yet it wasn’t at the center. It was a major player in my experience, and I couldn’t afford to forget it. I still can’t afford to forget certain things and factor them in — like getting enough sleep, managing fatigue, keeping lists to keep myself on track, and remembering that the “crazy” going on in my head isn’t necessarily going to be there tomorrow, if I just get enough sleep tonight and come back to my problems with a fresh view.
Over the past year or so, something new has come up – something beyond “Survivor”, which is actually about just being Human. The thing about TBI, especially, is that it doesn’t always necessarily have to be debilitating. Its effects may be permanent in some ways, and there may be continuous challenges (and yes, problems) you continue to have as a result of it, but over time we can build up skills and abilities and find a new resilience that adds TBI to the overall “mix” of our humanity.
When you get to the place of being able to live your life more or less smoothly, with some bumps in the road that are more speed bumps than cliffs leading down to the abyss, and developing the ability to recover from those speed bumps in a matter of weeks, even days or hours, then I believe you’re past the point of being a Survivor, and on to the business of being Human.
Looking around, it’s impossible to know what challenges everyone is dealing with. Hidden disabilities (or well-concealed challenges) are a part of everyone’s life. TBI is no exception. Yes, it’s different. Yes, it’s not like other challenges. Yes, it has a host of problems that come along with it. But ultimately, it can become part of the fabric of our lives, part of who we are and how we are that doesn’t have to just stop us, but also make us different, unique, and cause us to develop strengths we otherwise wouldn’t have bothered to develop.
That’s pretty much where I am now. I quit thinking about myself as a Victim, years ago. And I don’t really think about myself as a Survivor anymore, either. I’m something else. Yes, I know TBI is an issue with me. How could I forget? But that’s not all I am. There’s more to the story. And in a strange way, TBI helps me find out what that “more” is.
Well, enough talk. The day is waiting.