Keeping track

Keeping clear, keeping up

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?

WTF?!

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.

Onward.

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

3 thoughts on “Keeping track”

  1. I had mixed feelings about this post – I think I understand your perspective and your point but it seems to me that it may not be so simple. I present very well, phenomenally well – I am smart, articulate, and very hardworking – and frequently even I forget that I have a brain injury. In many circumstances it makes no difference – but in certain critical situation I (especially under physical or emotional stress) it becomes evident. In many business and social environments I struggle over time (even someone with severe dementia can pull it together for a short period of time). And this struggle gets me angry and is difficult because I am accused of many things – none of which are true (not motivated, not dedicated, not disciplined, not organized, not….not fit for the world). I constantly feel like I have some sort of secret perverse life. My NP (a new one) has suggested that I just come out – the burden of trying to maintain a stance and never ask for simple accommodations and the things I need to make me successful is getting too much – it is destroying my capacity to enjoy life, instead life has become about proving I can be ‘normal’. Like you I have hated the label – yet just this morning – before reading your blog I thought – not for the first time – that I belong to secret society, an underground community of other people with brain injury who get me. I can tell them wacky stuff, I can express my worries and I don’t feel judged. I have to take such care, even with people I know who care about me because they make assumptions all the time, the equate my brain injury issues with some larger incapacity. And I am tired of trying to explain that no, I am as smart as them, maybe smarter, but I need quiet, I need to write things out etc. I am in the process of undertaking some new ventures (hopefully) but I have to be so careful about what I say s that no one thinks ‘oh, I don’t want to work with this person, they are brain damaged’. And it has happened so I don’t make this up.

    The effort of living a double life is hard – and you do it too – you have this blog but you have your work self and keep your injuries a secret. I want help, understanding but not pity. I do appreciate compassion – and I often get the understanding and compassion from others. But I don’t want to only be a brain injury – I am other things too.

    Survivors often get fixated on their injuries, I know I do at times. And its hard to tell when a cigar is just a cigar. The transition process from out patient rehab to ‘living’ reintegrated into everyday life is a tricky one – and very very few people successfully navigate it unless they have a lot of money (famous folks and a few folks who are financially comfortable and not so well known) because they have the time and means to achieve things. Much of the time people are left with broken marriages, job loss, economic hardships, emotional pain and a great sense of isolation – and sometimes suicide. The world does not offer much grace to those who struggle.

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  2. m-

    Hmmm… Sounds very familiar. Having things break down under pressure, and then be accused of being sloppy or lazy or not caring enough… I have had that happen, on and off, over the past 9 months — especially about six months ago, when I inadvertently plugged the wrong code into the wrong pages, and it went without notice for several weeks, before someone found out. Or times when I was absolutely positive that I had checked something, but Oh, No… it was actually wrong. Or the time when I authorized a change to some sales quote pages, and over 6,000 requests for information got lost in the system as a result. They found them, but by the time they did, a lot of potential sales had moved on.

    It’s the most disconcerting thing possible, but my neuropsych doesn’t make a big deal out of it — unlike the people I work with. I have tried to explain that in a sales-driven organization, “losing” 6,000 leads is not a small thing, but they kind of shrugged it off as being less about me and more about the overall organization, which is partly true, but nonetheless, I still need to keep up, and that can be a challenge, especially considering how much pressure we are all under at work.

    I’m not sure how I’d feel about “coming out” to people about the brain injury. There is so much bias — do you want to be the one to educate the organization you work with? In your shoes, if push came to shove, I would involve human resources in any discussion with my boss(es) to ensure they are cognizant of ADA and other HR issues. Just so everyone understands what’s going on.

    I’m not sure whether people who have a lot of money ever truly reintegrate – Bob Woodward comes to mind. He’s still doing his journalism thing, but when I’ve seen him, it has been pretty plain to me that he’s at a different level than he was before, and it makes it hard to watch.

    Compassion, if you can get it, is great. I am fortunate to work with people who are actually pretty good-hearted (when they’re not blinded by their fear of losing out on opportunity) and who appreciate me and my contributions. I’m very fortunate that way. It also helps that they have no idea just how capable I used to be, compared to where I am now. Much of it is how I carry myself, and making key contributions at key times – like noticing details nobody else has picked up – in part because my insatiably roaming attention took an interest 😉

    It’s hard. I have mixed feelings about these things too. My next post was going to be about how no matter how far down the road you get, TBI can reach out and trip you up when you least expect it. And maybe that’s what’s happening to the person I used to know, who I just saw the picture of. Maybe the constant struggle of having to keep up, keep up appearances, stay with it all the time, is just getting the better of them. If so, I totally understand that. I just don’t know why their promoter had to use *that* picture of them…

    It feels a little exploitive, to tell the truth.

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