Discovering a new identity after brain injury – or creating one?

Works for me.

So, I’m working on my book TBI S.O.S. – an expansion of my site section TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury, and I’m doing a lot of reading about sense of self, identity after brain injury, and what it means to be “yourself”. There’s a ton of interesting material out there, much of it from experts and researchers, who either know, work with, or interview(ed) brain injury survivors.

It’s been about a couple of weeks, since I started working on the book in my spare time, and I feel like I’ve made some really great progress. It’s truly a burning question with me – one that cuts to the very core of who I am and how I see myself in the world. It’s also at the center of many other people’s lives, as TBI or ABI completely reconstructs the way they think, move, talk, experience the world, and express themselves… and subsequently affects how they experience themselves.

Usually, when I think of people “losing” their identity to traumatic brain injury, I think that it needs to be someone who’s lost key and critical pieces of their abilities — moderate or severe brain injury survivors only. But in my own experience with all those mild TBIs, I got completely lost and feel like I had been cut loos from any semblance of reality for years and years.

It didn’t take a catastrophic injury to cause a catastrophic outcome. And I think maybe that’s one of the things that throws people off with TBI — if you “look fine” and people can’t detect a difference to you just from looking at you and interacting with you on a superficial level, then you must be okay. Nothing going on here, folks.

Right?

Wrong.

And then we get left out in the cold, cut off from everything — including ourselves.

Especially with brain injury. TBI, stroke, aneurism, infection… anything that screws up the brain can do it to you. We TBI survivors don’t have the market cornered on losing our identity.

But for the purposes of this book, I can only speak about my own personal perspective, which is all about mild TBI.

I think mild TBI is in some way a “different animal” than other types of brain injury, precisely because it appears so “mild” and it’s so hard to detect and track. But the impact can be hugely disruptive. And getting back to some sense of who you are — who you ARE, and can be — doesn’t seem to be very well mapped.

My hope is that this book will serve as a sort of road map for others — or at the very least spark some ideas about what they could do, themselves, to get back on track. In my case, after years and years of not having a clear sense of who I am and what I’m about — feeling like I was losing myself slowly but surely, and having no sense of who I WAS anymore — that’s changed dramatically. I feel like my “old self” again, in many respects (others I’m still working on), and I know how that happened.

I did specific things for myself and in my life that made this possible. A number of things I did were related to what my neuropsych was discussing with me each week. And a number of the things went directly against what my neuropsych encouraged me to explore and consider. I also threw some things in the mix that they never thought of — or that they specifically told me not to do. Some of it, they said, was too simplistic, and didn’t reflect my actual functioning abilities. I did those simple things anyway. Even my neuropsych could apparently not see the extent to which I was struggling and how much it was all affecting me, so I had to do some super simple things for myself that gave me tremendous relief.

I sorta kinda took my recovery into my own hands, and I used everything I learned — including some key concepts from the  Give Back Orlando TBI Self-Therapy Guide — to get myself back on track.

And this morning, right here and now, sitting at my desk, typing on my laptop which keeps stalling because it’s old and needs to be serviced, I’m really feeling familiar to myself.

Again. More than I have in many, many years.

After so many years of feeling like a stranger in my own skin, feeling like someone else had “moved in” to my head and body and heart… it’s good to be back.

In the course of looking at the past 10 years of my life, after my last TBI, and beyond into my past before that (as I sustained a number of mild TBIs / concussions over the course of my childhood and adulthood), I have to say that the thing that’s saved my butt, over and over again, has been actively recreating myself — not getting stuck in a rigid version of who I was, or was supposed to be, and really actively seeking out new sides of myself to develop. Out of curiosity. Out of a sense of adventure. Out of a need to explore. And not wanting to be boxed in.

I’ve always been pretty fluid in my life. I had to be, because so much changed around me, all the time. From kindergarten till 8th grade, I was never in the exact same class situation from one year to the next. Every year it was a different group of kids, a different school. And I moved a fair amount. I got in trouble with the law and other bad situations, here and there, and I had to relocate to make a fresh start. I’ve changed jobs and careers several times. And in the meantime, I got hit on the head, which changed my perspective dramatically.

Through it all, I didn’t lock myself into a single identity. Not really. I mean, it’s not like I was a chameleon who didn’t know who “I” was. Rather, I always knew there was more about me to develop and discover. And that saved me, time and time again.

After my fall in 2004, though, something happened. I lost that flexibility. I lost my fluidity. I lost myself. It didn’t happen immediately. It was a gradual process… a slow erosion of who I was and who I knew myself to be. One experience after another happened, to make me doubt and question who I was, and get farther and farther from myself. Some people turn to religion or spirituality to find their way back themselves again. For me, any religious or spiritual feeling was gone, baby, gone.

Well, anyway, so it goes. I just looked at the clock, and I’m running late.

More later…

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