Life as an Extreme Sport

Author: Kelly

frames

life and living

It’s funny, that it’s hard for me to remember that we all colour what we hear with our own perceptions. We frame a situation based on our experience – something I have studied extensively, yet I still always seem to get caught by surprise when such basic miscommunication happens. And given that it was essentially the basis of my marriage for several years before I no longer had a marriage, you would think I’d be very accustomed.

But no, I still find myself saying things that I mean in perfectly innocent ways that are easily misconstrued by others to mean something so other than what I mean, I have to wonder what people actually think of me, that they would believe I’d say such things.

Which is sort of a roundabout way to get to the conclusion that perhaps I need to get my ears checked. People have been having a hard time understanding what I’m saying of late – as though I’m either not enunciating my words properly, or talking too softly, and I’m aware that both of these can be signs of a more serious hearing loss issue. I think I would prefer to believe that I’m losing my hearing, than have people think I’m so completely and utterly without sense.

the good, the BADD, the invisible

life and living

Blogging Against Disablism Day, May 1st 2007It’s funny, how things tend to work out. For example, I signed up to write on Blogging Against Disablism Day, which is today (May 1st), prior to rescheduling my doc appointment, which was also today. And seeing my doc was largely to make sure my body is still tolerating my pain management regime, and to talk about changing things up a bit – I’ve added naproxin twice daily to my “diet”, in an effort to drop back, one hopes, on the prescriptions.

But prescriptions aren’t visible. I can, typically, hide the fact that I have a disability – I am one of the many, the invisibly disabled. For those just joining, I have chronic pain (complex regional pain syndrome, or reflex sympathetic dystrophy, depending on where you live in the world) in my right arm, from fingertips to the bottom of my shoulder, as well as in my left hand. The CRPS is augmented by often severe neuropathy. But if you look at me, I appear normal. It is a great, secret weapon of mine, something I can pull out in a class on disability, when someone – and there is always someone – says something stupid, like if you can’t survive in the jungle with tigers, then you’re disabled and maybe it wouldn’t be a bad thing to take that disability and remove it. Because when people think of disability, they think of crippling, visually horrible, painful, early death illnesses, or something they cannot imagine living with, like being deaf or blind. They never stop to think beyond stereotype.

And I never have to live with the stereotype. I can decide if I want someone to know I have a medical condition that limits my life, that I live in pain every single day, and the difference for me is how much pain, not whether I have pain. I think I have had maybe three or four pain-free days since being diagnosed in 2004. But if I want to, I can hide it as just being tired, or sore, or not sleeping well the night before.

Today, that changed a bit, and I spent the day feeling supremely self conscious. My doctor gave me a few samples of lidoderm, a topical lidocaine patch that can be cut to shape and applied to areas suffering topical, neuropathic pain. Which I deal with on a daily basis, and she suggested I give these a shake and see if they help – especially at periods like now, when I should be writing several papers and spending most of my time typing and writing, instead of laying on a heating pad. I’m always game to try new things, so we sliced the patches up, slapped one on my lower shoulder blade, and the other immediately under my right elbow.

While I had long sleeves on, it was warm today and I had the sleeves pushed up enough that the patch was visible. Running errands after the appointment, I felt like people were staring – something I chalked up to my own discomfort, until several people asked what I was wearing, if they were the heat patches or something else. Once I got to the hospital, the people around me knew what I was wearing, and several folks I knew stopped to ask why I was wearing the lidoderm patch.

By the time I got to work, I had pulled my sleeves down.

I am a bit of a control freak, and one of the things I desperately like to control is what people know about me (which might sound funny coming from someone who blogs as much, and in as many places, as I do, but believe me, I control what I blog about, too). While I still have a choice as to whether or not I want to reveal that I am not fully able-bodied, it’s a “choice” that means I can have a bit more pain relief, or not. I have to choose how I want people to see me, and while I realize that I might be considered lucky, by many, to have the choice, to be able to pass, in some ways, I wish I didn’t have the choice. I wish I didn’t have to weigh which is more important to me, visible disability or fake ableism, or that it was even a question.

as easy to make war as to make love, without considering the consequences

...and everything else

Many years ago, it was very unusual to see me without sunglasses on. Specifically, mirrored and reflective sunglasses that ideally wrapped around and covered my eyes, completely. I would reluctantly take them off indoors if I had to, and my penchant for wearing them day or night left me open to many Corey Hart-related comments.

Flipping through April’s issue of Discover magazine, I’ve come across an explanation for the behaviour that maps well onto my own insights into my character at the time, and it’s from an interesting source: Philip Zimbardo. You might recognize this name; he’s the social psychologist behind the infamous Stanford Prison Experiment. He has spent the time since making his career on the study and its fallout, and talking about what it means to be evil, and where is that line between being good and being, well, not.

According to him, part of that line is when we deindividuate one another, and transform our character into that which we are not, through the use of props, uniforms and actions. They specifically used mirrored, reflective sunglasses in the experiment because of their ability to hide the eyes, and the power it gave the “guards” to hide their reactions, maintain impassivity, and the powerlessness it gave the “prisoners”, who were missing the very natural and normal interaction and ability to see facial expression and mood modulation via the eyes.

Reflective, mirrored sunglasses as a way of securing a small bit of power in a situation – that sounds like the person I was those many, many moons ago.

But interestingly, I think that Zimbardo’s comments about deindividualization is applicable quite a bit more broadly than he might necessarily realize, or be applying it. His interest, of course, is prison/guard binary scenarios; he was most recently spending quite a lot of time talking about Abu Ghraib, for obvious reasons. But take this following statement, from the magazine:

Situational forces mount in power with the introduction of uniforms, costumes, and masks, all disguises of one’s usual appearance that promote anonymity and reduce personal accountability. When people feel anonymous in a situation, as if no one ia aware of their true identity (and thus no one probably cares), they can move more easily to be induced to behave in antisocial ways.

Remind you of anything – say, the internet? This is, I believe, one of the reasons we have people like O’Reilly advocating a code of ethics or behaviour for bloggers – a hopeful, but ultimately misguided notion. And it’s misguided for the very quote above: so you ban anonymous comments in the hope to force people into more civil discourse. What, then, prevents someone from creating an alter-ego online, someone who can do and say whatever because it’s not tied to “who they really are”? Absolutely nothing, save the hope for honesty. I feel pretty confident saying that if someone is going to be a twit anonymously, they’re going to be a twit with a false name that gives them the same anonymity as the anonymous username will.

The internet has been celebrated for being a place where you can escape the constraints of whatever social injustice you feel is perpetrated on you in, as my former adviser would have called it, meatspace. You can become whomever you want, leave your limitations behind, explore being whomever you dream of or desire being. And in some cases that might be a very good thing, but in others it’s not – and there’s no real way to balance the extremes, or at least to force people to balance those extremes, because it is built into the very nature of the medium.

People will always take advantage of the medium – any medium – to express their antisocial behaviour, if they’re so inclined. If we’re going to reduce the antisocial behaviour of the internet, we need to figure out a way to reindividuate people – and while the goal behind a code of behaviour is, indeed, noble, it’s not going to succeed in curing the problem it’s attempting to address.

Everybody Lies

life and living, Pop Culture

My good friend and ex-officemate (so you know he’s got to have high tolerance levels – we shared a very close, confined space for well over a year, and instead of killing each other, went out of our way to work at the same time so we could do things like watch CSI and BSG whilst fighting our respective platforms) sent me what at first seemed like an utterly random text message last night – until I loaded the URL. What an awesome t-shirt! One of the most truthful House-isms (which in itself is funny), and for a great cause.

As soon as I have money again, that’s on my list of things to buy. It suits my misanthropy well.

chemo brain

Duct Tape and Prayers

When you’re in a house with two academics, the stereotype of an absentminded engineer, and my mother, who has always had her own special brand of space case, the question of chemo brain turns in to not wondering if it exists, but wondering if it can affect all of us, even if only one person is getting the chemo. And our conclusion was yes; for Mom, chemo brain might have been caused by the chemo, but for the rest of us, it was the manifestation of the severe stress we (especially my father) were under.

And let me tell you, we did some precious stupid things. I would find keys in the fridge or freezer – both mine and others – and an assortment of items were found frozen over the months. And I, I have always been of the extremely absentminded academic type (something that may surprise those who know me more recently in my role as supremely organized, but that’s just an illusion, trust me); I went from my normal levels of distracted to an entirely new realm I had never imagined, where I would pause mid-activity, trying to remember what I was doing (even though everything was in front of me as a massive clue), I would leave important paperwork sitting outside in the rain, and eventually had to leave detailed notes to myself in order to stay on track.

Of us all, my sister is the only one who seemed only minorly affected – she’d do the same stupid misplace things, and get sillystupid at night. But I suspect her long experience with cancer simply inurred her to what Dad and I were dealing with.

But it turns out that for a long time, what we joked so casually about, all of us having chemo brain, was actually considered an illusion, a fake symptom by women who wanted more attention. This baffles me, not from my normal standpoint of “but the mind and body are one, and if you do something massive to the body, like say flood it with toxins, you can’t honestly expect the mind to escape unscathed, can you?” but from the standpoint of someone who has seen the actual chemical chemo brain effect in her mother, and experienced the stress related version that afflicts caretakers. Having experienced both first-hand, I wonder how doctors ever become so isolated from their patients that they could ever be so dismissive of so obvious a problem.