Lately, I’ve been having some issues with losing track of things. Important things, like car registration papers, bills, and notebooks that have information in them I need. Fortunately, I’ve managed to get hold of the critical pieces. If I have a copy of something, there’s an excellent chance some bureaucrat has a copy filed away somewhere.
It’s a little troubling — but it’s also a good reminder that I really need to make some extra effort at times… often when I am least inclined to do so.
But it’s gotta be done — that extra effort. And I’ve gotta keep steady with keeping track of things. Who else will do it, if I don’t? No one, that’s who.
I’ve been doing some things lately to keep me better organized — things like cleaning off work spaces that are covered with papers that may or may not have any use or meaning for me, anymore. I have a general rule — if something has laid in plain view for six months or more and hasn’t been picked up or moved or referenced, it needs to find a new home, usually in the trash can.
Clearing out my work spaces is the first step in keeping track of my life. I need to regularly clear out the stuff that’s taking up necessary room in my life, to make more room for the things that I care about and want to spend time on. It’s the tangible equivalent of not doing a bunch of stuff that serves no purpose in my life in general. It frees up my attention from having to parse through a lot of crap that just gets in the way.
In many ways, keeping track is as much about deciding what I need to keep track of, and getting rid of the rest.
Okay, time to switch gears with this post. This morning I was looking at my blog stats for what people are searching for, and one search led me to a site that featured someone I met years ago, who I met around the time when I was first coming to terms with my TBI experience(s). They had a story similar to my own, though with fewer injuries. The impact to their life had been dramatic, and they had a long road of recovery after what had been a “minor” car accident.
We met a couple of times for mutual info sharing and support, and then we went our separate ways. When we met, back then, they seemed like they were “with it” for the most part. A few blips here and there, and a lot of hidden issues they talked about overcoming. To all appearances, they actually looked pretty normal — as so many of us mTBI survivors do.
But when I saw their picture online this morning, I was pretty shocked. They didn’t look like they were “all there”. If anything, they looked disoriented and a little frightened. And this was an official publicity shot for some sort of presentation they were doing about brain injury.
Holy crap. It’s only been a few years, and they’ve gone downhill that quickly? How is this possible? Had something else happened to them? Had they been injured again? Had all hell broken loose?
Thinking back on the interactions I had with them in the past, I do recall that they were pretty “into” the drama that can accompany TBI. They were also into highlighting the difficulties and challenges they and other BI survivors face, and when I talked to them about my situation, I got a hefty dose of pity, which didn’t sit well with me. It’s like they felt sorry for me and all my difficulties. “I’m sorry it’s been so hard for you,” is what they said. And I actually stopped checking in with them after that, because I don’t want pity and I don’t want anyone feeling sorry for me, even if they think that’s what they should do.
Make no mistake, this is NOT an easy thing to live with. But I’d rather be completely ignored, than have anyone’s pity.
“To show pity is felt as a sign of contempt…” is what Friedrich Nietzsche said, and while I’m sure I’m not quoting the whole concept, and it’s out of context, that’s how I feel — pity is a sign of contempt, assuming that the person facing down a challenge is unable to deal with it, and somehow needs special treatment and consideration as they cope with what comes along.
The last time I had contact with this person, they showed me pity, which felt like contempt. Don’t make me out to be less than human — that is, open to all the variety of life and able to meet my challenges with all my resources — just because I’ve sustained a number of TBIs.
And now I see their picture — of them looking somewhat disabled, actually. I’m really upset by this for a number of reasons.
First, it’s like they deliberately took a step back and they took on this persona of a BRAIN INJURY SURVIVOR, where (even if they are a survivor), the first part of their identity is about Brain Injury. It’s like they’ve made this who they are, and they’re going with it, without questioning it.
Second, it feels like they’ve sacrificed their own health and well-being for the sake of others. They were pretty active in brain injury support activities when I met them, and I believe their involvement has deepened in their own community. When I met them and other people they were working with, there seemed to be a lot of talk about everything they had to give up, because of their injuries. And when I talked about just wanting to live my life and get back into my life, one of them actually said, “There’s nothing wrong with you!” as though my unwillingness to give in to traumatic brain injury meant that I didn’t have any issues going on.
I’m still a little miffed about that comment. The person that said that had no idea what it’s like to have to learn to look as normal as possible, ’cause you’re gonna get yer ass kicked, if you let on that you’ve got problems, and you spend your life faking it till you make it… but you never quite make it.
Anyway, it also really bothers me that the people promoting this presentation would run a photo like that — like they had to find a head shot that made the person look a little on the disabled side. You could have taken that photo in different ways, or chosen a different one from the batch. But no, they chose one that made them look like an addled deer in headlights. How this is helping, I’m not sure. Unless it’s intended to make everyone feel bad for this person and treat them differently because they’ve had such a hard time of it.
Personally, in my own life, screw that. I do my best to present as best as possible, each and every day. I might have chronic pain, insomnia, sensitivity to light and sound, awe-inspiring levels of distractability, anger/rage/temper issues, impulse control, and a piss-poor working memory, but goddamn it, I’m not going to walk around with my ass hanging out just ’cause. I still have my pride. Certainly, it gets me in trouble at times, especially when I over-extend myself and I’m not making the effort to pay attention, but I’d rather push myself and see what all is possible, than give in to how I’m “supposed” to look or act, or whatever, and end up with less of a life than I could have.
I guess at the bottom of it, I feel badly for this person. Not because I think they can’t do better, but because I really think they can. And I hate seeing them slipping away because “that’s what happens to TBI survivors.”
Screw that. And screw anyone who says that it’s inevitable. My God, there is so much evidence all around us, each and every day, that all we think we know about the brain and how it adapts is not nearly enough… it’s a waste of time to succumb to assumptions that are based on past research and public opinion. I’m probably going to piss off some people in the ranks of those who believe that TBI relegates you to a life of permanent disability on some level or another, but this is my opinion and my belief. And I’m entitled to it. If I’m wrong, I’ll find out. But in the meantime, I — and many other people — truly believe in possibilities beyond our wildest imagining. And that’s not going to stop anytime soon.
That being said, I have errands to run in my regular life. There’s trash to take out, and a pet to take to the vet. And this afternoon, I’m going to get together with a bunch of friends I lost track of after my fall in 2004, when everything went to shit. None of them know anything about this, and that’s the way I’m going to keep it. If anything, I want them to see that I’m doing even better than I was before I lost it in 2004.