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.

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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.
 

Justice for Marcus

TBI + ignorance + malicious people = ....

I recently came across a blog that’s really affected me strongly — Real Estate Savant …. Justice for Marcus, a Brain Injured Young Man With Aphasia. — which talks about the experiences of a young man named Marcus who sustained a brain injury when younger, and is now in prison serving time for a crime he was not responsible for. I highly recommend reading it, as it shows the extremes to which life can go, when you have a brain injury… and others take advantage of you.

It makes my blood boil, when I think about it. So, to keep cool and not get thrown off for my entire day, I have to admit I’m trying to not think about it too much. Or at least try to think about it from a larger view.

People are people, and people who think they are weak, or who are lazy, or who are just plain bad, tend to take advantage of others — and when someone who is particularly vulnerable (like with TBI) comes along, then it’s payday!

And that’s wrong in so many ways. Yet when I think about it, this happens in countless other ways with people who are not brain-injured. Advertisers and marketers take advantage of our personal vulnerabilities. Whole multi-billion dollar industries thrive, thanks to people worrying that they are too fat, too thin, too scrawny, too bald, too hairy, too… whatever. If I could invent a product that would convince people they’ve solved one of the core things about themselves that makes them feel like a reject and a loser, that makes them believe they are not worthy to be loved, I’d be rich as Bill Gates. I can’t say that I’d be as happy as I am now… but then again, maybe I would 😉

Anyway, Marcus’es story just brings home to me how important it is for those of us with brain injuries to care for ourselves as best we can — and to seek out support from others who can help us. It’s also pretty clear to me that when it comes to dealing with the criminal justice system, knowledge and understanding of TBI (and a host of other cognitive/behavioral and mental conditions) is sorely lacking. And people get put in jail for all sorts of things – some of which they did not do, but couldn’t adequately defend themselves.

If we rely on the lawyers to save us… well, God help us. Some people close to me went through many years of hell because the high-priced lawyer they hired to solve a terrible family problem with the law, changed their tune from Yes, absolutely, I can keep your child from being convicted to No, your child is going to do time, after all.

It’s just crazy. Lawyers will tell you whatever they need to say to get the work and their fees, apparently. But the way the law works, it’s all too easy for them to use that as an excuse for poor performance. (Can you tell I’m not a fan of lawyers — especially brain injury lawyers?)

So, what do we do? How can we protect ourselves? It’s a hard one, and I don’t know the answer to it. The one thing I do know, is that when it comes to professionals and authorities, the very human people in those very difficult positions are all too often some of the most vulnerable people in the room. And if they are not comfortable with their vulnerability, they can and will and do make decisions and take actions and effect changes which can ruin the lives of others.

As far as I’m concerned, anyone who with the power of a lawyer, a judge, a doctor, a therapist, a prison guard, a nurse, an accountant, an insurance company executive/account manager, who might encounter someone with a brain injury should absolutely be required to have a working knowledge of the effects that brain injury can have on an individual. They should not be allowed to graduate, get licensed, or keep their professional status, unless they can exhibit at least a rudimentary familiarity with the effects of brain injury on cognition, behavior, actions — the whole person — and be capable of understanding what more highly trained brain injury experts may tell them at trial, at continuing education seminars, and in their respective literature.

Of course, before we get there, we have to have a commonly agreed upon understanding of the effects of brain injury on cognition, behavior, actions — the whole person — but we’re a ways off from having that. And before we get there, we have to have a broader social understanding of what brain injury can and does do to an individual.

And I think we’re a ways away from being there.

Still and all, I do believe that the attention that’s being paid to sports concussions (both professional sports and youth sports), as well as traumatic brain injuries leading to Emergency Department visits, will prove helpful. People are becoming more and more aware, and that’s good. We also need to extend the awareness of the problems with concussion and brain injury past the acute stage of They’re hurt – oh my God  and get to Now that they’re hurt what do we do… and then on to  We know they were hurt, so what does that mean for how they think, behave, make choices?… and then on to They’ve done/said/chosen this… how can we help them do/say/choose differently next time?

Like I said, we’re probably a ways away from going down that road as a whole society. We still love to punish, regardless of “guilt”, and there’s nothing like a stiff sentence to make a wronged party feel at least party vindicated. But on an individual level, I think we can do some of this — we just have to slow down enough, start paying attention enough, and be level-headed enough to see past the initial shock of “abnormality” that can come from TBI-affected thoughts, words, and deeds, and get smarter about how to respond.

I’m not sure what will help Marcus. I’m not sure what could be done to clear his name and/or get him out of prison. But I do know that he’s sure as hell not the only one this happens to, and I do know that he’s not alone. He probably feels like he is, he probably looks like he is, but as long as someone is in his corner, thinking about him and rooting for him and even praying for him, that’s at least something. Of course, that’s cold comfort when you’re behind bars, but that’s about the best I have to offer for right now.

Well, the day is waiting. Time to get moving. And time to be grateful for what I’ve got. ‘Cause I know for sure it could all go away all too easily — and all too quickly.

Onward.