Who am I today?

Summary / Bottom Line

I don’t feel like myself, these days. I haven’t felt “like myself” in a long time. And all the hopes and dreams I once had as a kid, seem so far from me. But maybe, just maybe, I am truly living my hopes and dreams… I just don’t feel like I am. And that changed sense of myself is keeping me from realizing how much my life really does resemble my onetime hopes and dreams. Restoring a sense of self can be a huge challenge with traumatic brain injury, and adjusting to how things truly are, versus how they appear to be, or feel, is one of my biggest challenges.


I’ve been thinking a lot, lately, about my identity… who I was when I was a kid, who I am now, and who I’ve been along the way. I recently had a birthday, and while I don’t feel like I’m having a mid-life crisis, I still have been thinking a whole lot about whether I am where I expected / hoped / planned to be, when I was younger.

I know that “life happens” and we can end up very far from where we wanted to be when we were younger. And to be honest, I’m not even sure if I had specific plans about the trajectory of my life, when I was younger.

I do know that what I wanted more than anything, was to become a scientific researcher. I wanted to go to school to get a bunch of degrees, and then focus on research. I’m not sure what kind of researcher I wanted to become — I just wanted to study, collect information, synthesize it, and publish it.

I also wanted to be a writer. Maybe more than being a researcher. Being a writer is what I always wanted to BE. Research is what I wanted to DO. In a way, being a writer is like being a researcher – it’s not the same type of science, but there’s a sort of science to it — observing, drawing conclusions, testing your hypotheses, etc.

Over the course of my life… well, life happened. I got hurt. A bunch of times. I fell and hit my head a bunch of times. I got in car accidents a bunch of times. I was attacked. I did stupid things. And I got hurt. I also had a lot of chronic pain that knocked me out of the running when I was in my early 20s. And I got in trouble with the law and some rough characters, and I had to go on the lam when I was in my late teens, which limited my future prospects.

Now, looking back, I see how so-so-so many opportunities have been out of reach for me, because of everything that happened back then. I have done my best to patch things up over the course of my life, and relatively speaking, I’ve done extremely well for myself.

But am I really where I want to be today?

I’m not sure. This life I’m leading doesn’t look and feel like I hoped it would. It feels strange and foreign to me. Hell, I feel strange and foreign to me. I feel like a stranger to myself, half the time. I don’t have that feeling of being “comfortable in my skin” that people talk about.

Now, I used to have that feeling. I used to have a clear sense of who I was and what I stood for. And I didn’t let anyone hold me back. Even when I was getting in trouble with the law and then went underground, living overseas till things quieted down here, I had a clear sense of who I was, and what I stood for. I had to change my life for a while, and I couldn’t do a lot of the things I had once enjoyed doing — like going anywhere I wanted, whenever I wanted. But it didn’t feel like I’d lost a part of myself. I’d screwed up for sure, but I was determined to fix things.

When I was in all that crippling pain, 25 years ago, I had to let go of a lot of activities that had once meant a lot to me. I had to stop exercising and spending time outside in the sun. The diagnosis that the doctors came up with was probably wrong (I never had tests that confirmed or denied it 100% — they didn’t have good tests, back then). But I had to take steps in any case. As it turned out, the things that I was told not to do — exercise a lot, move a lot, test myself physically — were exactly the kinds of things that I needed to do to alleviate my pain. Movement and staying active was NOT going to hurt me. Being sedentary was.

In those years when I was dealing with the pain, I lost of lot of things that meant a lot to me. I couldn’t eat and drink the same things anymore, and I couldn’t do the things I wanted to do. But I didn’t have a sense of having lost myself. I was still who I was, and I was clear about that.

Now things feel so strange and foreign to me. It’s hard for me to describe. Even though I know I’m doing better, and I have numbers and feedback from friends and family that indicate I’m improving, I still don’t feel like myself. It’s hard to describe — just that someone else seems to have taken up residence in my life.

I know my personality has changed a good deal, since my fall in 2004. And it kind of freaks me out, because that wasn’t the first mild TBI I’d ever had. I’ve had a bunch — probably about 9. I’ve been assaulted once, had at least 4-5 falls, got hurt a couple of times playing soccer, got majorly dinged while playing football, I’ve had a couple of car accidents, and so forth. But not until I fell in 2004, did it totally screw up my life.

Not until the past years, have I felt like a stranger to myself.

It’s kind of getting me down, too. At least, it has been. I try not to think about it, but it’s still always there… Who am I today? What am I going to do today that doesn’t seem “like me”? What am I going to feel and think and say and do that doesn’t seem consistent with the person I know myself to be?

That feeling of observing yourself going through life… it’s weird. Disorienting. I resolve over and over again, to hang in there and just keep plugging, until I see some glimmer of who I am. And sometimes it works. I’ve been feeling more like “myself” lately, which is nice. But at the same time, I don’t quite trust it. Like in Flowers For Algernon, when the main character stops taking the medicine that made him think and act like a normal person… and he drifts back into his old state. Whenever things are going well for me, I feel like I’m looking over my shoulder for signs that I’m slipping back into not recognizing myself.

I would like to stop this. It’s not fun, and it’s not productive. It serves no one, and being on high alert over it just kills my quality of life.

So, over the weekend, when I had time to think about it, I realized that maybe it would be better if I just acclimated to this feeling and let it be. It could be that I actually am getting back to my old self — I just don’t have the sense that I am. It could be that I’m even better than my old self. There’s a good chance of that, because my old self was majorly concussed and had all sorts of issues that I didn’t even realize. It could be that I’m in better shape than ever before… but I don’t have the sense of it being so, and therefore I don’t trust it.

I don’t feel like I’m myself, most of the time. Maybe all of the time. But maybe I actually am. Maybe the missing piece is NOT my personality and my identity, but the sense of my personality and identity. Just because the sense of being who I am isn’t there, doesn’t mean I can’t BE there myself.

Rather than getting all caught up in recreating that sense of myself, maybe I need to just get on with living, regardless of the sense of myself. Maybe I just need to trust it… not place such high demands on what qualifies me as me, or not-me.

And maybe — just maybe — the life I have now is exactly what I was hoping /expecting / planning / dreaming I’d have, back when I was a kid. Looking around at my study and thinking about how I live my life, I realize that I am doing exactly what I always wanted to do, when I was younger — reading and researching and writing and publishing. I write and publish this blog. I read and research TBI-related materials (especially concussion and mild TBI) and I spend a lot of time thinking about them.

I also read and research other subjects and write about them, though I haven’t published much of that … yet. I am getting to a place where I soon will, and then I will have that to my credit, as well. This is all done independently, according to my own standards. I’m not doing it professionally, but I have managed to help some people, here and there along the way. That much is clear from the comments on my blog.

So, even though it may feel like I’m one person, the objective facts reveal something quite different. And for me, it seems the challenge is to not let feelings of weirdness and alienation and failure stop me from just getting on with my life.

At some point, I just need to trust. I’m working on it.

Onward.
 

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On the up-swing

Up, up and away…

I’m gearing up for the coming week. I’ve gotta get my game face on, because my boss’es boss is gunning for bear. They took a look at the work I’ve been helping to oversee, and they’re not pleased. “Dismayed” is the word they used, I believe. Ah, well, I’m working on this not-getting-my-knickers-in-a-twist-when-others-are-pissed-off-at-me thing. We’ll see how it works out tomorrow.

The thing about this situation is, I’ve been warning folks about the problems that caused this “dismaying” condition for well over 18 months. I’ve been warning folks that the things they’re doing here (technically speaking) are harming things over there (logistically speaking). And I’ve been trying to convey the importance of staying engaged with certain (remiss) team members who are technically in charge of the screw-up (under my careful eye, of course), but are not technically proficient enough to do what needs to be done.

Not sure if that makes any sense to you, but it has to do with a mess of a content management system that is so convoluted, nobody can remember how to use it if they don’t use it every single day… combined with short-staffed people in distant lands who literally don’t have the permissions or the ability to fix the things they’re supposed to be fixing, let alone the time to hunt down all the problems.

So, where does that leave us?

In spin-land! Yes, indeed, I’m going to be spinning this in a positive light, focusing on the pro-active possibilities and thanking my boss’es boss for taking the time to even notice that stuff which they have — time and again — told me to not spend too much time on.

Seriously, I’ve been told to back off from helping folks out and I’ve been told I’ve “given them enough love – now pay attention to this other stuff” and as a result, things have gone to pot. I’ve tried to be clear about the downsides of neglect, but until the past month or so, nobody was paying much attention, nor did they think it mattered.

Until the home office (which is not in the USA, by the way) started paying closer attention to us… and now all hell is breaking loose.

Pity. Oh, well. It does make me intensely uncomfortable to not excel at every single thing I undertake, but this battle is not one that I’ve had much hope of winning, for oh about 2 years running, now. It’s been a political hot-potato, this piece of the corporate puzzle, and now the heat’s getting turned up.

How I would love to say “I told you so” — but instead, I’m going to be ultra-smooth and play it cool and work on the solution, rather than the problem. I have a feeling that my boss’es boss is going to be looking for a scapegoat, someone to assign blame to, and I have a big target on me, right now. But that’s not where I’m going to put my attention and energy.

I think I’ll make up my own interpretation about all this.

Everybody else is, so why not me, too?

The irony is…

Of all the people to ask for help and turn to others for assistance, I’m the last person who actually likes to do it. I hate to ask for help, in fact. I also hate having to consult with experts and see professional assistance with anything. It’s beyond frustrating and it feels humiliating.

So, when doctors assume that I’m malingering, or I’m trying to get attention, it’s the ultimate irony. I would much rather suffer in silence than have to discuss any of my issues with anyone.

But for some things I have to seek help. I just dislike being dismissed or categorized as a “faker” when I try to reach out and get some assistance.

I’m talking to my neuropsych today about this godawful tendency of mine to not be able to stop myself from saying and doing things that hurt others or make them feel uncomfortable. I’ve done it more times than I can count, and it’s actually been quite disabling, because in the face of uncertain circumstances when I don’t dare offend or hurt others, I keep my mouth tightly shut and don’t speak up. On the other hand, when I’m not careful, I tend to say and do things that get me or others in trouble.

Things like mouthing off to police officers or chasing them down to give ’em hell because they (rightfully) pulled me over… or keeping on talking when every fiber of my being is telling me to SHUT UP, and I’m pissing off people increasingly by the minute… It’s been a problem for a long, long time. And it’s really held me back in many ways.

I just don’t want my neuropsych to dismiss this or make light of it. It’s a real problem, not something I’m making up to get attention. And it would be nice if I could get some help without having to grovel for it.

I just need this to be real

I’m having more trouble sleeping. After a great weekend of lots of rest, I’m back to waking up early and not being able to get back to sleep. I know I’m tired, I know I’m agitated, and I know I’m nervous about my job interview tomorrow. Money is tight (so what else is new?) and from one day to the next, I never know just how things are going to turn out. I talk to my neuropsych about what’s going on, but they are so focused on keeping me intent on being/staying functional, that there’s not much room for me to discuss the difficulties I’ve been having.

When I tell them about my reservations, they try to turn my attention back to how to keep on track and keep on target. If I talk about feeling down or not feeling like I’m up to things, they have plenty of positive feedback for me about how well I’m doing, which is helpful. Yet, at the same time, there’s really no room for me to even acknowledge that things sometimes just suck.

At work, too, I’m surrounded by people who are 1000% (although technically there is no such thing as a thousand percent) into being positive and upbeat and can-do. How tiresome. It’s like you have to take the blue pill as soon as you walk in the door.

Sheesh.

And at the same time, I’m having a ton of trouble with just sleeping. Which makes it harder for me to go about my daily life. Which just adds to my cognitive and physical load. Which pulls me down. And that sucks bilgewater.

Well, gotta run to work. I don’t want a pity-party. I just need this to be real – I am having real problems with real situations, and I am clearly slipping in many respects. It’s real, no matter how much others may try to turn my attention away from it. And if I don’t deal with that real side, then I’m truly running the risk of getting into even more trouble.

Oh, screw it. It’s time for work. More later.

Whew – that was close!

Last Friday I had probably one of the worst days at my job. I got lectured by my boss about having done something that got them in trouble with their boss, and it threw me for a loop. So, I wrote this angry, rambling post about what a jerk they are, telling the world that I realized that many of the issues I’ve been having at work with them may be less about my problems, than theirs.

At the time, it felt really good to vent. I felt 100% justified, and I felt like I was coming to my own defense against injustice. It felt good to announce to the world that my boss is a jerk (I used much harsher terms, actually) and vindicate myself in the face of their (seemingly unwarranted) criticisms.

Fortunately, it turns out, I never published the post. It’s in draft status in my blog. And I plan to keep it that way. The thought occurred to me to delete it, but it’s a good reminder of how I can get really carried away when I’m tired and feeling pressured.

See, here’s the thing — the whole rage and temper and meltdown business is one of the particularly problematic things about TBI. At the time, when all the fight-flight chemicals are rushing through my veins, it makes perfect sense to my brain to fly off the handle. Impulse control goes right out the window, and the idea of NOT doing something rash is the farthest thing from my mind. It feels right and good and justified — it feels so right, how can it be wrong?

Well, it CAN be wrong. If only because feeding into it is going to cause even more trouble, on down the line. It’s bad enough that I had a bad day. But if I’d managed to publish that post, I would have not only spread the badness to everyone who was reading it, but I would have also had egg all over my face. Because in retrospect, they were a little right about what they were lecturing me about. They just did it in a way that I found humiliating, disrespectful, condescending, patronizing, and all the other attitudes that are hot-buttons for my temper.

And that will never do.

I’ve been thinking a lot about this list of questions people have been typing into search engines that get them to this blog. Rage and anger, temper and road rage, are frequent items. I think I’ll step on over to the post Quick responses to loaded questions and continue adding…