From Victim to Survivor… to Human

… or maybe we become something MORE.

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.

Onward.

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How I am today

I didn’t get much sleep last night. Things have “blown up” at work, and a project I was managing and thought was fine, is NOT fine. It’s crashed (not quite burned), and now I have to get it put back together and back on track.

I’ve done this before at this job, but on a much smaller scale. This one is very big and very high-profile. And the (over)reaction to the date slipping is making me reconsider taking a permanent job there. I had been thinking seriously about going permanent with these folks — they had hinted at it a number of times — and everything was looking good.

Then things went wrong, and the reactions of people outside my group have caused me to reconsider my plans. It’s one thing for me to screw up this badly — which I may or may not have done. There are some things I could have done very differently, which would have helped. But I honestly didn’t realize I needed to do them, and even though people were around to help me, I wasn’t aware I needed to ask for help.

Now I know.

But the folks outside my group, who are the ones making up the unrealistic deadlines, are having little hissy fits and flipping out. So, the whole grand progressive business world ideal of “failing fast” and “learning from mistakes” is just a bunch of B.S. — what matters is that you meet your dates — and ONLY that you meet your dates.

Yeah, that works out really well, for sure. Talk about sucking the life out of your work.

So, now I’m back to considering myself a contractor who’s just there to do a job. In a couple of weeks, we’re moving to a new office much closer to home, and that’s what I’m focused on — being close to home. I’ll be able to go home for lunch and take a nap. I’ll be able to just roll out of bed and go to work. I will be closer to everything that makes up my everyday life, and that’s what matters.

The simple fact is, I need to not get attached to my visions of how I think things will eventually turn out. I had been thinking that I would just sail through this first set of challenges, and all would be well.  Untrue. I’ve had a number of things blow up in my face, and I’ve had to scramble a number of times. As my boss said, “It wouldn’t be a real project, if there weren’t a fire.” Everybody else I work with has been through this to some degree or another, so now it’s my turn. But what this means for the long term, who can say?

Anyway, I’ll get what I can out of the situation. I’ve been on a roller coaster for the past two days — no, the past two weeks — and my world pretty much turned to sh*t in an instant. All the miscalculations, all the drama. Who needs it?

Then again, just because everyone else is all worked up about things — or my boss is saying they will be, in order to motivate me and get me moving with a kind of panic-anxiety booster fuel… I don’t need to lose my cool over it. Their stuff is their stuff. I’ll just keep going, to get it all done, and keep steady at work.

If nothing else, people are impressed by how calm and composed I am in the midst of it all. This calm, composed demeanor is genuine, and it comes from years of managing outright panic in the face of very real crises. It comes from all my years of living in a sea of confusion and overwhelm, and figuring out how to function, anyway. It comes from years of walking around in a fog and doing a damn’ good impression of someone who’s mellow and chill.

And the good news is, I’ve got it all together. This is the first time I’ve been able to hold my sh*t in the face of very real problems, since I fell in 2004. I’m not melting down, I’m not losing it at work. I’m not flying off the handle, and I’m not flipping out, throwing things and slamming shit around on my desk. It’s cool. I’m cool — on the outside. Inside, I feel like I’m dying — like the Allman Brothers song:

Sometimes I feel… Sometimes I feeeeeeel

Like I’ve been tied to the whipping post… tiiiiiied to the whipping post… tiiiiiiied to the whipping post

Oh, Lord I feel like I’m dyyyying…

But I’m not dying. I know I’m not. It just feels that way. And in another couple of weeks, I won’t feel this way anymore. So, I’m dealing with it, walking through the pain and agony. Every breath pains me, and I don’t know whether I’m coming or going. My demons are flailing around — overtime — and while I can see my way through, who knows what will pop up along the way?

Whatever does, I’ll deal with it. I can do that. That’s how I am. It’s who I am. I used to be like this — in the most trying of circumstances, I would remain calm and prevail. I’m doing that again, and although it feels excruciating… f*ck it. I’m here. And in the midst of this all, I feel like my old self again.

Which hasn’t happened in a very long time. And I thought it would never happen again.

But surprise — there I am again. That side of me is back. It’s partial, and it’s struggling, but it’s there. And that’s good enough for me.

Okay, back to it. Suck it up and wade back in.

Onward.

 

 

 

 

 

 

The book is going well

Working… working…

So, I’m finally sitting down to write one of the books I’ve been planning for some time. It’s an extended version of my series of posts I wrote about Recovering a Sense of Self after TBI. I had already written a good bit, for starters, so it’s filling out nicely.

Which is good, because I need to make some headway on it, and this coming week promises to be really crazy. I’ve got three big deadlines looming at work, and I’m going to be flat-out pretty much the whole time.

This book is letting me focus in on one thing that I can do, rather than a million different little details that I need to make sure everyone else is doing. It’s a lot of work, but it’s good. And it’s a welcome change.

It’s also reminding me about a lot of things I’ve conveniently blocked out of my mind, for some time now. All the issues that come up after TBI, all the confusion, the frustrations, the dead-ends, and back-tracking that’s a regular part of TBI recovery… it can get to be so overwhelming. And when you’re just beginning your recovery, finding a pattern to your life, a structure and meaning… well, that’s the main challenge. It’s critical to put positive, constructive structures in place, so the brain can acclimate to a routine again. Our systems are lovers of routine, and we need to have a sense of ourselves in a context that makes sense.

Beyond TBI, this book is teaching me lots about the world in general. The things that apply to TBI recovery, can also apply to other neurodiverse challenges, as well as life for the general populace. With TBI, they’re all made that much more extreme. Human relationships, how we live our lives, how we find meaning in the world, how we build a sense of who we are and how we will / would / can / should be to ourselves and others around us… all that becomes so much more confusing and frustrating. And with TBI they also all come into much clearer focus as important — essential — parts of human life and experience.

It’s like, with TBI we are pushed to the outer limits of what it means to be human. And with TBI recovery, we are forced to reach deeper inside ourselves and farther out around us, to develop the resources we need. People without TBI could probably learn a lot from TBI survivors about what it means to be fully human. The thing is, everyone is so afraid and under-informed. So who wants to listen to us?

Well, whatever. I’ve got a couple of hours to do some more writing, then I’m spending the day with my spouse. The weather is beautiful, and we have an all-day outing planned. So long as I get back at a decent hour. Because my day starts early tomorrow.

Onward.