Five years ago, I started giving a lot of thought to what traumatic brain injury does to your Sense-Of-Self. Of all the things that brain injury does to a person, disrupting your sense of who you are and how you fit in the world is one of the most dramatic and disruptive pieces of the puzzle.
What’s more, it’s the most hidden one of all — obscured from those around you by “weird” changes in your personality experiences… and hidden from your own view, because it’s hard to tell what’s what, when your brain has been injured.
In fact, I believe that losing your sense-of-self is one of the most traumatic elements of traumatic brain injury. Yes, the injury was traumatic. But it’s the ensuing days and weeks and months and years that take the real toll for many. And if the disconnect is big enough between who you and everyone else understand yourself to be, and the person you appear to have become, it can wreak havoc — both internally and externally.
There’s a reason so many TBI survivors don’t have a lot of friends. Fatigue is one aspect. But also, our old social circle has a way of dissipating, when they realize you’re not the person they’re accustomed to.
It’s serious business. And it has profound impact. But other than a few folks, here and there, I haven’t actually found much writing about it — how to understand it, how to explain it, how to see it in the larger social context… or for that matter, constructive advice on how to actually do something about it.
Losing my sense-of-self was a massive “hit” to me and my well-being and quality of life. And it didn’t just happen once. It happened a number of times. Each time I got clunked on the head or slammed around in a car accident, I’d come back with a little more of myself missing. I couldn’t explain it to anyone — after all, I hadn’t even gotten knocked out. What was I complaining about? What was there to complain about?
It was terrible. And the worst was after my fall in 2004, when the injury was more severe and the change was more marked than it had ever been. It was sheer hell. And I had no idea who I was, anymore.
So, a couple of years ago, I decided to write an extended series on the subject. A book-length work, with chapters posted here, so people can read it.
And I was making good progress. I really felt like I was making strides, like I was getting myself back, and I was able to share what I’d learned with those who needed to know about my experience.
But then I hit a snag. All of a sudden, last summer, I stopped feeling like I knew who I was. I wanted to write about restoring my own Sense-Of-Self, but I just couldn’t. Because I really wasn’t sure, myself. There were still holes in my sense of who I was, still gaps left from an injury that was over 10 years old, but wouldn’t seem to f*cking heal. It felt all wrong, to be talking about getting my Sense-Of-Self back, when I didn’t feel like I’d done it.
Well, it’s been six months since I stopped moving forward, and in that time, I’ve settled down quite a bit. And while I do have my “off” days, I have to say, I actually feel like “myself”, most of the time. And I now actually feel as though I can speak to how a person can actually get back a sense of their Self.
There are bound to be those instances when I look around me and don’t feel like any of it is familiar… like I’ve been dropped off somewhere by folks who were giving me a ride, and decided they didn’t want me in the car anymore, when I feel asleep and started snoring too loudly. I think, because of my injuries, that may never go away 100%. But even so, I can honestly say that pretty much all the time, I actually feel like myself, again.
It’s an updated version of mySelf. But it has a whole lot in common with the earlier versions of me. And although it may feel foreign, at times, that foreignness actually feels like me. It’s not like I’ve been dropped into someone else’s body. It’s me, having the experience of not feeling like me — as me. If that makes any sense.
And in fact, the very experience of not feeling like myself, has become one of the identifying factors of my sense of who I am.
It’s familiar. It’s not always comfortable. But I have become certain that I mySelf can handle it just fine.
And I do. Because that’s who I now know myself to be.
Time to write another chapter.
You can read TBI S-O-S – Restoring a Sense-Of-Self After Traumatic Brain Injury here
Broken Brain - Brilliant Mind 
This blogger is clever. Likely has a mild form of autism so he is too details and persistent. The comments today hit home. Thought you might like to read it. Lainey
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Thanks – did you mean to send a link?
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I don’t see this as a form of autism. TBI can manifest itself similar to the traits of autism. My friend has kids with autism and she says I remind her of her kids sometimes because I get obsessed for one reason or another…
Anyway, this is an excellent post! I liken TBI to being stoned. My personality took a turn with my TBI. I was muddled and confused. I’ll be posting more about it soon (I only just started my blog), but I went from someone who wears only natural colors and tries to blend into the wall to someone who wears reds and yellows and shouts her opinions!
In fact, it could have gotten me into serious trouble one night. I lived on a street my police dispatch friend said, “You live WHERE?!?!”
– It was a place where 13 to 15 teenagers would be face down and handcuffed in the street on New Year’s Eve or Forth of July every year,
– We had gang tags all up and down our street.
One night, at 2am this car was parked across the street with its bass booming. Now, after the injury my hearing became very sensitive. This woke me up or kept me awake. I marched across the street in my pajamas and confronted these GIANT gang guys saying something along the lines of, “You are going to TURN THIS FUCKING SHIT OFF! People are trying to SLEEP!” Then I marched away. They turned it off! I have more sense than to do something so foolish now, but then? No.
To Elaine: if you wish to consider this detailed comment a form of autism, be my guest. I believe it is a part of having a TBI. I have always done this since my injury. Prior to my injury, you couldn’t get me to say 2 sentences about how I felt on a given situation. Now, you can’t shut me up.
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Anyhow, I mentioned being stoned then dropped it. I never tried pot until I was 39 – some 14 years after my TBI – in the form of a brownie. My friend meant for it to kick in at Beach Blanket Babylon in San Francisco. Instead, it kicked in when I was back, alone, at the youth hostel. I was paranoid about the big column behind the common computer I was using. Then, I went up to the room I was staying with 5 other girls.
I went in, all of them were changing or in bed. My mind didn’t remember meeting any of them. (I don’t think I had.)
I left, went to the bathroom.
– I came back to the room, introduced myself again, explained the brownie problem and left;
– I realized I forgot my medicine (I think), so I went back into the room, introduced myself, explained the brownie problem, forgot why I was there, left;
– remembered I forgot my meds, went back…;
– repeat 2-3x,
– by now the girls were telling me they’d met me several times already;
-I focused on one, noticed she was wearing a certain color shirt. I told myself if I see a girl wearing that color shirt, I’ve met them already.
– I went back into the room 1-2x(?) but recognized my clue and didn’t introduce myself again;
– FINALLY, I got ready for bed and took my medicine, climbing into the top bunk (a challenge with my visual vertigo and being stoned).
The next morning I couldn’t find my meds!!
Idiot me had left them in the bathroom! I was fortunate someone had turned them into the front desk. At the time I was spending $1,200-$1,700 each month on medication alone!
The next day I switched to a private room so as not to have the embarrassment of the night before and to have better security for my medications. Lesson learned.
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I highly recommend a book! Claudia Osborn “Over My Head” http://www.amazon.com/gp/product/0740705989?keywords=over%20my%20head&qid=1454687907&ref_=sr_1_1&s=books&sr=1-1
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Her website: http://www.claudiaosborn.com/tbi-whats-it-like.html
Claudia’s book gave me a lot of comfort after my injury. I read her account in Reader’s Digest. Watch the video “I, Claudia” from Dateline embedded under “TBI – What is it Like?” It changed how I approached my recovery.
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Shceiße! My WordPress app changed from my SurvivalDay416 to my first account I created and then changed my idea for the name. I’m the same person! Lisa Hamilton. I’ll try to keep better watch on that.
Also, I couldn’t do the simple switch of making an avatar. I’ll get someone to help me with that today.
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Finding purpose and meaning in my life again has been the best thing for me.
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And that’s a great thing – it connects you with something bigger than yourself — and the Self is constantly changing. Thank you for your work.
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I enjoyed her book, as well. It gave me some great insight – especially with regard to the training she did in NYC.
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Well, it’s a good thing your meds were turned in. That’s a heck of a monthly expense!
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I’ve heard all sorts of definitions and comments about autism. Some of it very well reasoned, and some of it pretty ignorant and hard-hearted — right out of the 1950s. Whatever. I find that a lot of aspects of TBI show up in autism — especially the sensory sensitivities. Then again, that’s common in migraine, too, so in my book, it’s all brain-body stuff, and the steps you’d take to mitigate in one context may or may not work in another. But some conditions are better understood and have more robust “toolboxes” to deal with what’s going on, so it makes sense to me to borrow from wherever there are mature approaches available. Labels and diagnoses are difficult — on one hand, they can help clarify what’s going on, and help guide the approach you’ll take. On the other hand, they can be used against you — and often are. I, for one, will probably never check a box around “disability” or “medical condition” on an employment form, because that makes it all the harder to get hired. That’s because it makes it hard to fire you — and if a company isn’t free to fire you, they’re less likely to hire you.
I like being employed. I like just kind of going through life, unencumbered by a lot of bias and people who talk about things they don’t understand — and that includes just about every type of neurodiversity. I keep it to myself, and if I were ever diagnosed on the autistic spectrum, I’d probably never mention it to anyone.
People just don’t get it. Especially brain stuff.
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