No floating

Cross posted. I had written this on another blog (which is less health related and more other general stuff) but it has become something which I think fits well over here in No Harm.

Today we had a three and a half hour mini-conference in my department. As with so many academic gatherings, we were cramped in a way which recalls that line Tom Hanks delivers so excellently in the Coen brothers’ remake of The Ladykillers: “We academics are inordinately fond of wedging ourselves into confined spaces.”
Gosh, it seems almost criminal to add to such a perfect summary, but I feel I must contribute a resounding HELL YES.

I admit, I’ve always been a bit prickly about my personal space. However I’ve come to regard big name talks, mandatory meetings, and other high turn out events with a nasty mix of trepidation, embarrassment, chagrin, and preemptive irritation since losing the totally taken for granted guarantee of a non-painful hip. It limits me in ways I wouldn’t have even imagined. One of them is sitting. Another is accommodating and navigating the wedging in process.

While the rest of the academic world continues its love affair with wedging behavior, for me it poses a genuine physical threat these days. Today’s gathering was, my god it was like we were going for a world record, like some crazy kids from back in the 50s or 60s or whenever it was kids crammed themselves into phone booths or swallowed goldfish. Today’s gathering was so crowded that even senior, tenured faculty were seated in the far less desirable chairs lining the walls of the room rather than at the big table (the big table was all full up with the overly punctual bigwigs and presenters). Several junior grad students sat on the floor. A few stragglers ended up sitting in the hall, crowded around the open door like the proverbial hobos around a barrel fire. I saw our newest faculty hire (a youngish, terribly quiet man they lured here from somewhere in Europe) sitting in the hall, furthest from the door at one of those “desk-chair” monstrosities.

Since I know what to expect (hard rigid chairs with negative leg room if I don’t see to matters in advance) I arrived a half an hour before the first talk, rolling in front of me one of the cushioned, adjustable chairs from my office. I set my chair up where it looked like I’d have some leg room if I needed to straighten my leg out a bit, which I often need to do when I sit for a long time. Unfortunately, due to the crowd, even before the time the talks started, I’d been hemmed in by chairs pulled in from the hallway.

As talk time approached, a young woman holding a chair approached me, or more properly, approached the space I was occupying. She walked up in front of me from my right and stood there holding her chair aloft, looking expectantly at the small slice of empty space I’d managed to keep in front of my left leg. I didn’t move my legs to let her pass, hoping she’d quickly give up and look somewhere else. She saw me see her, saw me not move my legs, but she continued to hold the chair up the way a toddler might hold up a cup she wants refilled by her mommy. “Ok,” I thought, “She thinks I’m being rude, which I arguably would be if I didn’t have a really good reason to need this space. I’ll explain.” I addressed her: “I’m sorry, I need to keep this area a little open because…” and as I was saying “I have a hip problem” she huffed, sighed exasperatedly (over my words), then half turned (one of those taken for granted liberties of a pain free hip) and wedged her chair down into the slightly less open area a bit off to my right.

My god that pissed me off.

Not because this alone was such an offense. It’s irritating but I wouldn’t be blogging about it if it were just that. It got me because this is the second time in a week I’ve had an encounter like this.

The first was when I was walking across campus. That time, two men were walking two abreast toward me on a wide path. I was keeping to the right. They were keeping to the middle. To my further right was snow and ice packed up just beyond the long muddy, ice crusted puddle which bordered the edge of the path. The men advanced, and I adjusted my angle a bit to the right. The men continued to advance and by now it was clear there would be no passing them on the right without hitting the puddle but if I tried to cut over to the left of them, I would have to pivot on my left leg and move quickly to avoid colliding. So I stopped. At this point, the one to my left saw me and started, improbably to move to his left, bringing him further into my path and also straight into the shoulder of the man who he was walking with. They bounced off one another, then split, then we all came to a stop for a moment, during which time I made eye contact with them and shrugged. They veered off to my left and I resumed walking, now a bit past them when one of them said in a quite abrupt tone “well WE were taking our cues from YOU!” I didn’t stop walking but looked over my shoulder. He was stopped and looking, well, pissed. His friend was a few steps ahead of him and looked apologetic. The pissed off guy nearer to me yelled”I GUESS SOMEONE’S HAVING A BAD DAY?!” I stopped and turned back and said “I have…” but got no further since he had by that time spun around (another hip maneuver) thrusting his hand down in a “oh just forget it!” gesture, and walked back to his companion muttering.

Not worth it, it being allowing myself the luxury, god…the JOY of engaging him in a massively hostile confrontation which would suck up half my energy for the day, but damn what a dick. I thought about the encounter for a while that day. Then I forgot about it. After the young woman with the chair, after seeing that she looked so annoyed, I thought about it again. Since it felt so shitty not to say anything further to those guys earlier this week, maybe I would feel better if I said something to chair-lady. I considered trying to explain to her at the break why I had asked her not to put a chair practically on my lap. But what do I accomplish by soldiering on and explaining? I am certainly not contrite, although I am somewhat embarrassed to even need this accommodation. But I don’t feel bad for her, not exactly. Do I want to make these people feel bad, feel as bad as I felt? Not really. Do I want them to understand and not think ill of me? Paradoxical as that is given my irritation at this kind of behavior, I do think that is more the likely cause.

Since today’s first talk was one I’d heard before, I had some time to consider these situations and my reaction to them in the space immediately after my encounter with the chair wielding woman. And here’s what I decided. I don’t really give a shit if someone that clueless thinks ill of me. Impatience or gross self importance, clearly it’s a sign of a flawed character – someone who I probably would not like, or at least a side of someone I wouldn’t like. Many, many years ago, before I had arthralgias and the various “moans and groans” which have changed the landscape of my day to day life, I decided that I needed to stop letting it eat me up if people I didn’t like didn’t like me. The situation which prompted the decision to at least liberate myself from wanting some kind of approval even from people I didn’t care for was just one of those run of the mill workplace irritations. Probably this is something other people learned in 8th grade but I’m a late bloomer so it wasn’t until my late twenties that I realized what the hell did it matter if someone I disliked thought ill of me, providing we could keep things professional and civil?

So today, I extended this to the people who can’t manage to not avoid putting themselves on a collision course with me while I’m walking slowly and with a limp, to the people who won’t take just a second to be decent about being asked to make a very minor accommodation, to the people who are slightly inconvenienced so I can be (just be) without hurting myself. I pissed her off. I can’t casually glide out of the way of very important men. I’m stuck forcing them to notice that crowds do not simply part for them – which means that maybe, despite what their mommies and daddies raised them to believe, we don’t all live to accommodate them. I can’t float like a butterfly so I suppose what’s left is to sting like a bee and learn to be ok with that.

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Required reading

I just found a great site, linked in Dinosaur’s blog. It’s called “Multiple Sclerosis Sucks”. The writing is honest, informative, and entertaining. I liked the pages How a Scientist Thinks, Statistics, and You Be the Research Scientist so much that I may suggest them for my upcoming research method course.

On this site, you can find affirmations of the following sort:
When life gives you lemons, find somebody you despise and squirt them in the eye.

As if this weren’t enough to endear the author to me for his ability to pull together exactly the right words, I soon found a page called The Semiotics of Chronic Illness. Here’s how it starts.
Semiotics is a subdiscipline of linguistics devoted to the study of how we communicate both verbally and nonverbally using signs and symbols. Being chronically ill is something you can choose not to talk about, but even if you don’t talk about it you will inevitably end up revealing your chronic illness through body language, gesture, and facial expression. You’re going to constantly be sending out signals whether you want to or not.

Go check it out and enjoy.

down

I’m feeling down today. I had a bad intestine day yesterday, my legs have been killing at night, and the PT is not going well. I have a lot of pain doing the exercises, both in and out of the pool and I’ve been exhausted after the pool exercise.

So far I’ve only gone to PT once a week since the holidays sort of disrupted the scheduling. This week will be the first time I go twice. Once today and again on Friday. If it doesn’t go well, I will have to reassess whether it is worth it to continue the therapy – or at least whether it is worthwhile to continue like this. I’ve given myself this week as a cut off for making that decision otherwise I know I will let it play out and start doing things like canceling appointments and avoiding my out of pool exercises. I know I will do this. Knowing doesn’t mean I will not do it, so it’s best to take steps to avoid coming to that point.

Sounds silly but in my screwy world, it seems reasonable. After this week, I’ll have had four appointments and I think I’ll be able to decide if the lost time due to low energy from fatigue which is seeming to always follow is outweighed by any noticeable reduction in hip pain and increase in stability.

The therapist asked me today, as she always does, how things are going, how I’m feeling, how I felt after my last appointment. “I really don’t feel very well today, I’ve had some pretty bad leg pain in both legs, mostly down in my ankles and up in my knees although my right thigh was killing for a couple of days this weekend. And I’ve been exhausted after the appointments.” Her response was “Well we’re really not doing much…”

And that made me feel pretty bad. I would say it pisses me off, because to be honest it does. But the pissed off is secondary. I know it is. The primary thing is that her saying that felt like she was trying to negotiate or debate the point. And that’s just shitty. I told her that I realized we aren’t doing much and that this makes me feel bad, feeling so tired from doing so little. This is not normal for me. I lived 33 years of my life NOT like this. I got accustomed to NOT being like this. And now I live like this and I don’t like it. I added, after a moment of marching in place in the pool like a good little patient, that I also didn’t like hearing that we didn’t do much because I am very deeply aware of that and hearing it after I was asked how I’m feeling made me feel like a big loser for being so tired from so little.

She apologized. Pardon the pun but it was a watery apology. The apology wasn’t the point so much though. I didn’t think telling her how it felt would make it all better. But I did think that she should know how her off hand remark had made me feel.

So now I’m home, I’m pooped, and I’ve got a bit of a temp. Despite that, I’m not feeling wrecked physically – hey who knows. Maybe this time will be different and I’ll not feel horrible. The temp is not a good sign though. I’m thinking that it is nice to know I don’t have much to do tomorrow, but even that thought has a barb in that it leads me to consider how well I’ll be able to live (let alone thrive) in a professional job with a body which is so reliably unreliable.