Lately I’ve been wondering whether brain injury really changed the person I am or if it just added a new layer to my old self. It may be impossible to articulate and probably unanswerable. Obviously, an injury physically changes how the brain works and directly causes a host of problems—physical pain, cognitive deficits, and the loss of identity (e.g. the tendency to ask existential questions like this). But cause and effect are not always clear. There are many problems that could be organic or could just as well be new incarnations of innate character traits.
I’ve gotten used to the idea that everything different in my life since my TBI has either been caused by the brain injury or what I learned in my neuropsychological rehabilitation. But what if there are fewer changes than I imagined? Am I still who I was but with some parts missing? That would explain the feeling of being lost in a foreign land.
For example, I used to think I was always right. But if brain injury has altered me functionally (it has, now I am often wrong), while leaving my sense of self intact (i.e. I still see myself as in the right), my perception would contradict reality. Since I’m nothing if not logical, one or the other would have to give. The belief of always being right could, unconsciously, be directed somewhere else. So instead of being convinced that my answers were better, I’d think I was wiser because I’d learned the best strategies, and was convinced that I could recognize a brain injury—or deficit—intuitively and in the moment. Which I am.
Does that make any sense? One more try:
If brain injury changed the life I lived—the structure, productivity, and satisfaction—but not who I think I am in life, it would explain why I feel rudderless. I keep trying to find my place in the world, a goal I can realistically accomplish and the initiation to follow through. Instead, I feel like I have no purpose. I come up with labels to define myself like an advocate (really?), a leader in the community (since when—6 years ago?), or educating people about brain injury (who am I teaching?). So what’s up with that?
All I can say with certainty is that the feeling of being unmoored seems to grow deeper as time passes.
A Brain Injury Life 
Laurie,
I am so grateful to you for writing about your experiences with brain injury. When you talk about not having a purpose it reminds me so much of myself and my own struggle post injury. Trying to accept the end of my career was very hard. That’s a complex blow to a person’s life. It’s hard to figure out a path, especially when that loss happens to a woman in her 50’s. So, I want to say a few encouraging words to you.
There are days when I feel more unhappy about my situation and days when I am, finally (after 10 years), experiencing moments of true satisfaction. When I read what you write through “A Brain Injury Life” I am moved by a brilliant mind, beautifully expressing this state she’s in- in an effort to enlighten others by her experience. Don’t let yourself believe that this is not valuable. It’s simply not true.
You may be living a very different life now but you have found a way to make it not just helpful to others, but also an expression that reaches artistic heights.
So write. Believe in yourself. Your need to share your experience of brain injury provides a helpful and insightful document for those who follow you down this path, and there are so many of them. To be an advocate- continue to advocate. To be a writer- continue to write. There are some wonderful books about brain injury. You could be writing the next great one.
With love and respect, Tracy
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whoa… Thank you for this, Tracy. This came out of a month of writing a post then seeing myself – acting like I’d figured it all out. But I haven’t. I thought I had a purpose – being there for other people with brain injury, building community, but as time passes it seems to be slipping away. Even writing, my new discovery since my TBI. Yes, I do find it hard to believe in me. Not just because of my brain injury. Maybe just at this moment, maybe I’ll swing around again, or maybe it has always been hard to believe. But it’s responses like yours that help me see a bit more and feel a bit stronger. I really appreciate it.
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Thank you Tracey, I couldn’t have explained it better myself. I also, am a lady in her 50’s post brain injury of 2013. I really struggle with the loss of my old life, job and my long term relationship. I tried so hard to be ‘normal ‘ , whatever that means. I feel bereaved. I don’t think it’s easy for others to understand the feeling of loss. I try hard to feel grateful that I survived, but would have missed out on so much if I hadn’t. These conflicting thoughts go round and round in my head constantly. How can I move forward? I just feel SO stuck!!!
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I’m ten years out and have a lot of the same thoughts. Apparently, I came a cross as a know-it-all before my injury. My Sister-in-law said “He used to look down on the others but now he’s just like the rest of us. I don’t like average but since the TBI, it’s not too bad especially since expectations are lower.
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I’m sure you’re not average, none of us are. I guess I still have overreaching expectations for myself, which really doesn’t help my peace of mind …
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I think I’m more chilled. I don’t get so worked up by the same things that used to drive me mad. I’m much more patient.
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laurie,
i have had my bia thinse ’90. there are good days and bad. try to do things you like dont please every one. don’t let it define you . i have meet people in the crochet guild they don.t know. i had crocheted before my brain aneurysm thet just think i am a good crocheter. it has taken me a long time to get to this pint. talk to me one on one.
jill
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At this point, I do not define myself by my brain injury. It’s part of who I am, just as other events during my lifetime have become part of who I am – like my kids. What a shock of a life-changer that was! Twin boys trying everything out, and me as the mom trying to keep them from killing each other or themselves. It turned my life upside down – but for many reasons good and bad. I am still a mother (the boys are almost 36) but that’s not how I define myself either, although for a long time it was.
That’s what I was thiniking when I wrote it. I’m not a different person, this is just one more layer on top of the person I was before it happened, and before that. Does that make sense? I hope so
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Laurie, I make similar expressions in my story, please watch😊
https://m.youtube.com/watch?v=prgPCaSg4iI
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I have had the same problems, thank you for your courageous article. The sense of self (as created by ourselves) can be put together by a part of our brain. It is so disorienting, particularly if in a new unfamiliar environment, with no familiar anchors or people to shape us from the toutside. I ‘ve found after 17 years that it gradually improved as I built new routines, and as my attempts to explain to people got better and paid off a little. Also sometimes just serendipity as the right person comes along, or (in my case) a class that did not require my damaged functions. Try and notice those times you feel more of a sense of self and think about why that might be. Uncertainty is a symptom. Realising this helps. just keep putting one foot in front of the other and slowly there will be some improvement one way or another. I still have a big problem with it when thins change and I find im in an unfamiliar situation with no tools to help myself, thank goodness these happen less often as your environment gets better.
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You honesty & advice are drawn from a difficult knot to untangle. After 14 years I can focus (often don’t), see progress (mostly), and accept uncertainty (well…?). But at times, don’t you find you’re back-sliding? That’s what I see lately. My life is pretty even, although there are surprises. But it’s been a very difficult year beyond coping with BI. Good to have reminders like yours to look back on. Thank you
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