Thursday, September 30, 2010

Random September

It's still September. Marginally. But here it is, just under the wire and not a complete link-o-rama. Still being nice to my shoulder and what do you know, it may actually be working (shhhh! Don't anybody say that out loud, please).

My latest movie from Rogers Video Direct (Canadian version of Netflix) was The Love Trap. Made in 1929, it was the first movie to use sound, but oddly, only for the last 20 min., the rest of it was silent. Charming little movie that I enjoyed thoroughly and it made me realize how much is communicated without words. Sure, for the silent bits, there was a bit more gestures, but really, you got the gist of what was happening through watching body language, facial expressions, etc. It was actually a nice change. Quite restful.

Found this article on somebody's tweet - I click on links, they open in the tab, I don't have time to read for days, so I have no idea who originally tweeted this. It's about the restored painting of a naked dwarf from the mid-16th century. Aside from the rather fascinating history of the painting, it provides a look into what it was like to have one particular kind of disability hundreds of years ago. It made you property, not quite human and if you were lucky, you became the property of someone powerful and then it was your job to amuse them. By e.g., fighting monkeys. While I may bitch about inaccessibility and discrimination, at least no one makes me fight primates. Which is a good thing, because they freak me out. As do clowns and mimes. Bit of an abrupt segue, but I'm feeling highly random.

Found an article in Wednesday's paper about the harassment of children with food allergies. Also a look into another world, one where kids are separated, taunted and threatened because they're different. It reminded me of when I was in elementary school, relentlessly bullied because I was different. It's sad to see that apparently, nothing has changed. And that these kids are facing not just bullying, but actually threats that endanger their lives? Makes you shudder.

Someone raised a crocodile. And then taught it to do tricks. I'm speechless.

Remember Rob Ford? One of the candidates in the race for mayor of Toronto, the guy who has no problem using the R-word in his campaign literature and who's famous - infamous? - for saying things that no one in their right mind would. Unbelievably, he has become the front-runner in the race and if he gets elected, I'm in for four years of high blood pressure. He's running on reducing waste at City Hall, really hitting that "we're overtaxed" button, despite the fact that the part of our taxes that go to the City is in the single digit percent. To prove this statement, does he trot out reports, statistics and the like? Nope. He says "everybody knows there's a lot of waste at City Hall." Right, Rob. Because that's what I want in a Mayor: someone who uses the "everybody knows" argument of stereotypes, not to mention padding his lies to gargantuan proportions. And as further proof of his… erm… I'm not quite sure how to phrase this, but let's call it lack of couth... class? Credibility? in that same article, he also refers to himself in the third person. More than once. Excuse me while I go bang my head against a wall.

And lastly I believe Gaina tweeted this one: F**k It chocolate.  Wonderful.

Wednesday, September 29, 2010

Not Getting It

I used to be involved in organizing disability awareness days, both in university and later on a larger scale, but these days, I have conflicted feelings about them. With the benefit of hindsight, it became possible to see that too often, such days are "Trot out the Cripples Day" and after it's all over, people/the organization go back to not worrying about accessibility until it's time to plan the next awareness day. When these days are used as merely one aspect of an accessibility strategy, days to celebrate accomplishments made in the past year, they work and can be a valuable way of making the public aware of what's going on. If they are held in isolation, essentially being the beginning and end of an accessibility strategy, they don't really do anything at all.

Simulation exercises are often part of awareness days and this is when the able-bodied get to spend some time in a wheelchair, using earplugs to simulate being hard of hearing, dark glasses to pretend being visually impaired and you can imagine the rest. And I have conflicted feelings about those, too. On one hand, I hope that such exercises will give someone enough exposure to carry just a small amount of knowledge forward, just a tiny bit of nudging in the back of the head that gets them to consider access as they move through their life. On the other hand, I don't really think that happens. People forget or worse, become absolutely convinced this is terrible, that there's no way they could ever live like that and then we're back to the place where those of us who travel seated (or whatever) get put in a completely different category than regular people and become the recipients of the groveling admiration just because you decided to get dressed and leave your house.

Which is all a way of leading into this story, in which an intrepid journalist takes on the challenge of spending an hour in a wheelchair. It appears to be the result of a story by a parent of a disabled child reporting issues getting around apart in South Africa. If you've ever traveled in or with the wheelchair in a park, you know what it's like and the journalist describes his hour as "emotionally and physically draining." So far, so good, but then we get to the point where I got snippy. Because the journalist describes getting stuck, calling people to help, but if nobody responded to the call for help, "I simply stood up and moved the wheelchair, much to the surprise of onlookers."


Dude, if I may be so bold, I would like to opine that you have completely missed the point of the simulation exercise. Nevermind the fact that spending an hour in a chair in a park by no means simulates life in a wheelchair, but unless you commit to spending that hour seated, without the escape hatch of being able to get up and move the chair from the obstacle, this exercise has no validity whatsoever. In fact, I might even question your journalistic integrity because you allowed the escape hatch to exist at all. How much more powerful with the article had been if he'd reported not just on the physical barriers of the park - getting only so far and remaining stuck would pack a punch indeed - but also on the social barriers by people not responding to the call for help. That article would have been a powerful call for change, might even have prompted some of that change. Instead, we are left with the usual groveling admiration expressed in the last line "I salute all those in wheelchairs." Which is completely useless.

Now, a simulation exercises meant that you were given an undetermined time in the chair, with the addition of electric shock if you try to get out of it for anything other than bathroom activity purposes… Well. That might do the trick.

Friday, September 24, 2010

Pass the Gravol

Last week, when I made a few notes for a post about the new season of Survivor, the document was saved as “Same Old Thing, Yet Highly Entertaining.”  For those of you who aren't interested in reality TV, stick around, because it will evolve into something entirely different. This season does look like it's going to be a treat - the tribes are divided into Younger Than 30 and Older Than 40 and both tribes have their share of nutbars. The older tribe also has somebody who actually has practiced lighting fire without flint. Hallelujah! I always wonder why the contestants don't relentlessly practice this the minute they submit their application. It's starting to bug me so much that even though I'm just a viewer, I'm thinking of learning how, just so I can feel even more superior.

Another thing that makes me - and likely every other fan out there - feel superior is the idiotic tendency in the last several seasons for contestants to start playing an individual game on Day 1. This means that they start voting off people who might be a threat later in the game and it makes me shake my head, because these "threats" are exactly the people you want around when it's tribe against tribe, because without them, your tribe starts losing and the goal is go into the merge with your numbers up. Don't these people watch the show? Do they not think of strategy at all? And then there is the eye rolling ridiculousness of some time in the first or second episode, some young stud will opine what one of the young studs did in last week's episode: "I don't want a girl to win." What's next? A treehouse with a sign that says "no girls allowed"?

However, even though it's taken me two paragraphs to get here, there comes a point of today's post, which is not about reality TV, but about how it brings out ugly stereotypes. Kelly B., one of the contestants on the younger tribe uses a prosthetic leg (due to a birth defect and she's used a prosthetic leg all her life). And this is what the rest of the tribe has said about her...

In the first episode, where they've just landed on the beach a day or two ago, the rest of the tribe called her a "rock star" to her face when she told them about the leg because apparently the mere fact that she's not huddled inside, bemoaning her lot is impressive. Context, people! This is all she's ever known! What's the big deal? The automatic worshiping that able-bodied people do to people with disabilities if they live a fairly normal life drives me crazy. However, behind her back, they immediately started talking about voting her out, because she'd be too much of a threat down the line due to the "sympathy vote".

WTF??? So they're assuming that no matter what Kelly does for the next 40 days, you can only imagine that the jury would vote based on her having a disability? It is not even considered that she might get a vote because she deserved being at the end or that she wouldn't get any votes because she'd backstabbed and manipulated her way there. Then yesterday (episode 2, where they've now been marooned for about five days), one of the contestants called her a "charity case," because people with disabilities don't get to where they're going on merit, do they? Noooo, we only go to school/get a job/become a contestant on Survivor because people feel sorry for us. This paragon of human virtue and intelligence than proceeded to sit out a challenge so she could see whether Kelly would be using her lack of a limb as an excuse for not doing well in the competition and it was entirely satisfying to see that Kelly smoked ‘em all.

And it's starting to make me nauseous. Is it because she's a girl? Survivor's cast an amputee in the past - remember Chad? – and I don't remember there being quite so much derision thrown his way. Is it because they're young and therefore apparently stupid that the stereotypes are popping up this ugly? Or is it that Survivor, as is often the case, distills and magnifies opinions and stereotypes that are normally hidden under the cover of social noise. And it is because I suspect the latter - with some influence of  both sexism and youth - that I'm queasy, because this is something we all fight. The assumptions that we can't, the lack of inclusion in any form of Yes, We Can! slogan, the inability to see past the label and through to the person, which brings us right back to the assumptions that we can't.

I know is about exposure and I know that by Kelly being on Survivor, some of these numbskulls will begin to see her as a person, maybe even as a woman and that some of the viewers will change their minds and see the disability less. And if she turns out not to be a saint, maybe it will even be all right to hate her (wouldn't that be revolutionary?). But that doesn't change the fact that I have this awful taste in my mouth and that my heart is heavy. It's not often you see the stereotype this clearly and it's not a pretty thing.

Thursday, September 23, 2010

Telling It Like It Is: Pain Awareness and Rheumatoid Arthritis

September's National Pain Awareness Month in the US and I got on the barricades on MyRACentral...

"'Are you in pain right now?'
'Yes. I am always in pain.'

I was talking to someone about RA and when she asked me this question, I felt a strange inner shift. It took me a while - several hours, in fact - to realize what had happened. It had been relief. The relief of being honest about my pain. And it made me think."

The rest of the post is here.

Monday, September 20, 2010

Drugs and Bitterness

It's been a bit of a summer. Not weatherwise - it was gorgeous - but in terms of my pain and injury levels. The right shoulder has been bitchy for months and when it finally started simmering down just a little bit after the steroid shot about a month ago, the left one took up the cause, apparently thinking that I’d feel lonely without a hefty dose of pain somewhere in my body (note to shoulders: no, I would not). And then the right shoulder felt left out and just around the shift from August to September freaked out completely, making it really difficult to get anything at all done. About a week ago, when both shoulders appear to have someone healed again, something happened to my back causing it to seize up.

Throughout all these various escapades, I threw drugs at the problem and did my best to learn to modify my activities (admittedly, this learning has improved more lately than in the beginning this summer) and because of my new focus on healing my body first, completing the to-do list second, by Friday morning, I felt pretty good. My back was just muttering, my shoulders were simmering in the background and I more or less took the days to quietly putter. Bought groceries for the weekend, talked to friends on the phone, did a teensy amount of work, but stuck to the plan of coddling my body throughout the day and it went so well that a little before midnight, I realized that other than taking my usual dose of painkillers around dinnertime, I hadn’t needed any meds all evening.

And that's when the windowsill jumped out and attacked me.

No? Okay, what really happened was this: I’d finished watching my movie and went to the bedroom to pick up my iPod, located as always on the small tray table I use as a bedside table. It's on wheels and had been put out of the way a little bit closer to the window than normal, which I found out when the windowsill hit the toes on my left foot (the leg that doesn’t bend) and pushed back.

The pain is overwhelming, all-encompassing, there is nothing but the pain and the urge to make it stop. Luckily my instincts are functioning well enough that they know this means I must reverse my wheelchair - which probably took 2-3 seconds, but it feels like hours - but there’s nothing else, because everything shuts down and I become very, very quiet, curling in upon myself as a reaction to the assault. And for a while, I sit there inside a pain so clear and sharp and pure as a sunny morning in Antarctica and then, as I start to reclaim my breath - the nausea doesn't until hit about half an hour later - I assess the damage. How bad is it? It hurts. A lot. Was there a crack? Did I feel a crack? No. Okay, good. Nothing broken, then. Can I curl my toes? Yes, cool. And bend my toes upwards? Sonofabitch! No, I guess that's not a good idea. And for the next little while, I feel very alert as I become very aware of the straps of my sandal as my foot swells and naturally, share the experience with a friendly voice on the phone, talking very fast, because that's what shock does to me. I also try to somehow wiggle an icepack down towards my foot, but it's hopelessly slippery and ends up on the floor where Lucy sniffs it and backs away, almost bouncing off the cold.

As I simmer down again somewhat and my foot simmers up, I start to worry about my transfer, because naturally this happened to my strong leg that does most of the work when I move from chair to other places. And then it hits me that apparently, I am not allowed to have even 24 hours with entirely manageable pain, because someone, somewhere is convinced that…. Well, what? It'll be bad for me? For heaven's sake, it's not even Mercury retrograde! And I'll admit that I'm more than a little put out about this, getting just a tad cranky about the prospect of having to heal yet another injury for several weeks, making the remark that my plans for the weekend are now scuttled, leaving only "drugs and bitterness." And the only thing that saves this from being more melodramatic than a 14-year-old girl with PMS is that it is said with a dollop of humour. The deepest, darkest humour, but at least it's there.

And then I decide to go to bed with a lot of drugs and remember that there is at least the possibility that this might not be as bad as I think it will be. That perhaps Humira and the strength it has allowed me to regain will make it possible for me to bounce back without weeks of healing.

I wake up Saturday morning and the swelling is down. And although the base joints of my toes are aching, more so when I stand to transfer, it doesn't really interfere with the transfer and it appears that I won't have to spend the next several weeks healing this one (universe? Please don't get any ideas. I'll be okay without further injuries for a long while. Go pick on someone else. Better yet, stop picking on anyone!).

And that's when it occurs to me.  Is this what happens to regular people when they hurt themselves?

Tuesday, September 14, 2010


I don't normally do this. I may hold forth about access and barriers to accessibility, but I don't normally take on specific individuals or businesses in my neighborhood (except for Buskerfest because they deserve it). However, one of the big grocery stores in my neighborhood has recently done their best to demonstrate that they don't want my business and I'm so outraged steam’s coming out my ears. And naturally, this means I shared with you.

There are three of the primary Ontario big chain grocery stores in my neighbourhood: Metro, Loblaw's and Sobey’s. Metro, previously Dominion, is closest to where I live, so it's where I do most of my shopping. In the past week, they have eliminated three checkout aisles, created a self checkout area and installed a gate right next to this area funneling people from the entrance into the store.

Yesterday around noon, I enter Metro, come upon the gate composed of two metal bars, one after the other, approximately 33 inches off the floor. I cannot enter through them, so move on to the self checkout area which is thronged with people and I cannot get through there, either, so I keep moving past checkout after checkout aisle filled with people, get to the end of the checkout area and there is an aisle with no people in it, but it is locked with a chain. I managed to squeeze through the accessible aisle behind 4 butts, almost getting whacked in the face with a backpack, do my shopping, check out and as I am exiting the store, I see two headoffice-y looking women supervising the implementation of the self checkout and I can't help myself. I stopped and asked one of them if she would share my shopping experience. She agreed and I took her through my trip from the entrance to the far side of the checkout area, showing how I couldn't get through anywhere and then we had a conversation.

Our little talk started with me mentioning that this particular area has a higher than average number of people using mobility aids and Ms. X mentioning how they had paid attention to access, doing their best to ensure accessibility. I asked if this process included consulting people with disabilities, which she didn't know. Were I more telepathic than I am, I’d have hazarded a guess that she thought this was not the case.

We then returned to the gated area where she tried to persuade me to try to move through, moving one of the bars with her hand, indicating how easy it was. I mentioned that not only hadn't I tried, I also had no intention of doing so, not wishing to be decapitated. She pressured me again, trying to get me to just give it a go, again emphasizing how easily the bars moved. To which I said that perhaps they did move easily for her hand, but how would she feel about pushing open these bars with her chest, by which I meant pushing open the gates with your breasts and I'm pretty sure she got my drift, as she indicated perhaps this wouldn't be terribly comfortable.

We then discussed the self checkout area which at the time had cleared up somewhat and I mentioned how whereas I might be able to get through now, I wouldn't if there were just three people in that area.

"Right," she says, "because you don't want to impede the people who were there."
"No," I reply rather firmly, "because they are blocking my way." These are two entirely different perspectives and given that we are discussing accessibility, I feel it is important to emphasize that we are looking at this from the point of view of a wheelchair user.

She then mentions that they do have two aisles that are wheelchair accessible and that they follow government regulations. I mention how the Ontario Building:Code is usually at least 10 years out of date and that although it specifies a certain width for a space to be accessible, many of the wider wheelchairs and scooters cannot get through such spaces. Ms. X agreed that this was the case, commenting that my wheelchair was quite narrow. I then felt compelled to ask if she thought the gate follows government regulations for accessibility and she indicated that perhaps not. However, this is apparently a high theft area, so the gates have been installed to try to curtail such activities and at this point, I again felt compiled to opine that when you weigh an issue of theft against human rights legislation, perhaps the solution should look a little different.

The last issue for discussion was the keypads for use with debit cards, which have been lowered so they’re at about the height of my head and locked in place, no longer detachable so they can be moved to where I and other people with disabilities can reach them. This is deemed to be accessible. I engaged in a little monologue about how when people have disabilities, it tends not just be their legs that don't work, but rather the entire body, including limited mobility in one's arms, leaving most of us unable to reach the keypad. Not only does this mean that this is another area in the store in which we cannot participate equally, but also that unless we pay by cash, we need to ask the cashier to enter our password, violating our privacy in all kinds of ways. Ms. X did indicate that these keypads were soon to be replaced with something more accessible.

And then I gave her my card, asking for a follow-up and got her card, too, said thanks for her time and left the store, feeling much better.

Will this have an effect? I bloody well hope so.

Monday, September 13, 2010

Fall Migration

The monarchs left yesterday.

I’ve been trying to pretend it isn’t happening. The cold that came on the Labour Day weekend, temps dropping from hot to cool between Friday and Saturday and staying around can no longer be said to be an aberration, just a fresh interlude between heatwaves. My feet have been cool for days now (still no socks, though!), for the past 4 nights, I’ve woken up in the middle of the dark and need to snuggle under the comforter to get warm again and it’s been a good 10 days since any trace of sweat appeared. But David Phillips, head prognosticator of Environment Canada, had said fall would be warm, feel like summer, so I closed my eyes and pretended, waited for the warmth to come back.

And then the monarchs left, one after the other flying west past my windows in a day of migration and reality hit. Because no matter how warm it is in September, there’s a day where beautiful wisps of orange and black fly past my view, fluttering on the breeze, starting the unfathomable long trip, leaving us behind, summer leaving with them.
I never see them coming, one day, they're just there and you know it's for certain, that summer is here and throughout the warm months, you see them alighting on this flower and that, among the bees and the white butterflies. But mostly, it's the monarchs that for me are synonymous with this season I love best.

I have no photos from yesterday, no images of the butterflies floating past my window, sometimes several in the minute, sometimes on every half-hour or so, but they kept coming. And it somehow seems fitting that this exists only in my memory, the ephemeral beauty too light for capture.

Fall is here.

Friday, September 10, 2010


This was the plan: on Saturday, September 11, a small church in Florida (very ironically called the Dove World Outreach Center) would commemorate the tragedy of 9/11 by burning copies of the Qur'an. Despite this church only having 50 members, the issue took over the media, as such a hateful act naturally should, people from all over the world protested it, including many Americans. Because such a bonehead move will add fuel to the extremist fire, undoubtedly making someone declare jihad against American targets and when asked about the possible consequences and loss of life from this act, the pastor of this church - which on its website proclaim that "Islam is of the devil" - declared that "we do not feel responsible for that." Right. Dude, you do know that you are the Christian equivalent of an Islamic extremist, right?

Yesterday afternoon, the burning was canceled, the pastor claiming that an agreement had been reached with the builders of the “Ground Zero” mosque to move the location, but this doesn't appear to be the case.)

But it's more than that, isn't it? Is a particularly egregious example of the hatred and intolerance increasingly expressed towards Muslims. There’s Sarah Palin whipping everyone in the room frenzy about the mosque that's going to be built on Ground Zero, neatly sidestepping mentioning that the proposed site for this mosque is four blocks away, as well as ignoring the existence of strip clubs within that same ratio and the plan to build a mall on Ground Zero. Which is so much more respectful, y’know.

And then there are countries like France that ban women wearing the hijab - hiding it in a rule against wearing any religious clothing in state schools (does that mean you can't wear a yarmulke, either?) - and I find it particularly ironic that the country of "liberté, égalité, fraternité" was leading this particular social movement, because it proves that just as Napoleon - the Animal Farm: Centennial Edition, that is - said, "some animals are more equal than others." And it's also sort of ironic that to make this point, I use a quote attributed to a pig.

It makes me wonder why there seems to be so much confusion about Islam and Muslims in the US, why there's continuing polarization and simplification of the issue, with so many people equating being Muslim with being an extremist and not understanding the difference. It's sort of ironic that the country created by people who fled religious persecution has so little understanding and tolerance towards religions that aren't Christian. And naturally, I'm making a huge generalization as there are many very smart and tolerant Americans who have as many problems understanding this as I do. But that’s the first thing I don't understand and the second is how so very many people are using Christianity, a religion of love, to spew such hatred.

Part of my reaction to this is my general bleeding heart liberal tree-hugging politics, but the other part is that I live in an area where there are many Muslims. A good quarter of the tenants in my building are Muslim, are terrific neighbors who are very involved in our little community and any time somebody starts with the bigotry, I see the faces of my neighbors, see the faces of my friends and wince. We're not perfect, far from it - my mother's homecare worker has teenage sons who are afraid to speak Arabic in public and it makes me wonder what their everyday life is like to generate such fear. But I think there is hope in this neighborhood, in the city because of the integration of different cultural groups -the different becoming familiar is the first step to understanding and that counts for cultures, disabilities and any other difference you can think of.

Getting back to the Qur’an burning, I did some reading about it and on Wednesday, the National Post posted an opinion piece called A Double Standard on Rage. They make a good point that regardless of burning or no burning, extremists of any faith finding something to be pissed off about, then talk about the infamous Danish cartoons of the prophet, saying that "There was little wrong with the original 12 cartoons to Western eyes; we see cartoons of our leaders and idols on a daily basis that are as bad or worse." And then go on to defend our God-given right to print caricatures by saying "[a]nd we shouldn't have to curtail our beliefs and cultural practices just because people half a world away with only a sketchy understanding of our culture go into violent fits of rage." And my question is why not? Why not lead by example?

Let's say a friend of yours comes over for dinner to introduce a new boyfriend, who happens to be Muslim. Would you serve pork roast and tell him to suck it up? If you wouldn't be that intolerant and rude in your living room, why would you be that rude anywhere else? It's about respect, the respect you show to your friend because you don't want to hurt her feelings by being an arse, respect you show to other people in your neighborhood by not interfering with their right to religious expression (provided, of course, that it doesn't hurt anyone else and I don't see how e.g., wearing a scarf can infringe upon the rights of anyone). And it is the respect you would show the neighbors further away where, in the immortal words of Evelyn Beatrice Hall, you may disapprove of their opinions, but would defend to the death their right to have it.

And then I started thinking about the irony of that National Post piece, because although we don't think we should curtail our beliefs and cultural practices, we certainly expect others to do so, don't we? We expect Muslims (for instance) to curtail their beliefs and cultural practices not just when they, as so many other people from so many other cultures, move to our countries, but in their own homelands, too. I guess some of us really are more equal than others, after all.

And it makes me wonder about the legacy of 9/11. We have a choice: to nourish more hatred or to create love. Why not go for love? Why not try to build a world where there is less reason to hate?

Thursday, September 09, 2010

Rheumatoid Arthritis, Pregnancy & Parenthood

Not having wee ones of my own, I had no idea. I received information about a new book dealing with pregnancy when you have RA and it looked like something we should review for MyRACentral. I interviewed the author - a lovely woman named Suzie from Perth, Australia - and found out that there is next to no information about pregnancy and RA. Aside from "then you go off the meds, wait until they're out of your system and get pregnant." It was completely stunning to me and yet another reminder of how little information there is available on how to actually live with this disease. And I could start a nice rant about this - or to be more accurate, as I seem to have already built up a nice head of steam, I could continue ranting - but the point of today's post is provide a link to a short review of Arthritis, Pregnancy and the Path to Parenthood and my interview with its author. You can read it here.

Also, I'm featured in a special section on Joint & Bone Health in today's National Post, but I think only the print version.

Tuesday, September 07, 2010


It all started last Thursday morning as I was making my way to the grocery store after having kicked in 30 minutes on work. I'm making a mental list of what I'm going to do after I've been shopping, actually keeping it fairly reasonable, trying to take it easy on my shoulder. As I get close to the grocery store, said shoulder starts making its presence known - not screaming, just grumbling - and right there, on the sidewalk, I had a minor epiphany. An epiphanette, if you will. Namely that my shoulder should decide what I do, not my mind. It could be argued that I've claimed to learn this lesson a few times, but this one felt like practical learning.

I went home, shoulder felt okay and I decided to do two small things, easily done within half an hour so I didn't set the timer. The next time I looked up it was an hour and 15 min. later and my shoulder was as tight as a drum. At which time I engaged in several minutes’ worth of yelling at myself, which may have involved unladylike language, thoughts of banging my head against the wall and/or employing a dominatrix to crack a whip at 30 min. intervals.

Right. Park time. Sit in the sun and bake, letting the heat penetrate deep into my bones. And this is where I had another epiphanette. When there was about 20 minutes left before I had to be somewhere else, I turned off my book and just sat with my eyes closed, listening to the wind and the world. And realized that I need to take time to do just that, because if I'm always listening to a book, there isn't time for my brain to slip into free association mode, the state where the brain makes connections and leaps, where ideas bubble up from beneath and where there is enough mental space to figure things out.

And it wasn't long before one of those leaps… erm… leaped. Because I started to think about partners. About how my body is my partner in my life and I need to treat it as such (yes, this again, but with a slightly different slant). I thought about my other partnerships, be they of love, of friendship, of family or of work and what I do if a partner in one of those relationships tells me they're tired, that they can't do, that they have to stop. I respect that, I even encourage it. Then I thought about respect, about what it means and went home to look it up, finding this definition:

deference to a right, privilege, privileged position, or someone or something considered to have certain rights or privileges; proper acceptance or courtesy; acknowledgment

I don't do that with my body. Don't consider it to have a right to which I should defer. Instead, I ignore its requests, hate it for making them and not only do I not give it a veto, I don't even give it a voice. And this was big enough to make it all the way to an epiphany, something I thought about the rest of the day, kept thinking about for days, actually. I throw these words around, discuss the idea of working within your limits, of respecting your limits, but I never sat down quietly and thought about what respect means or what respecting my body's right might look like.

Over dinner, I held forth about the epiphanies of the day, going on about this concept of respect and how I'm good at it with the other people in my life, but horrible with myself, talked about working within my limits and David opined that my definition of this seems to be to work right up to my limits. And this is when it gets ridiculous and a little sad because this statement triggered an epiphany of such proportions that I still have aftershocks.

Do you know the Spoon Theory? It's a way of explaining the energy requirements of having a chronic illness, assigning units of energy/spoons for different tasks in your life and taking away your spoons as you go through your day. A field of light bulbs or viewing it as a bank account with a positive or negative balance make more sense to me (my math isn't good enough for only 12 spoons), but whatever. The point is that until now, my interpretation of working within my limits has been exactly that - working within them, but being so close up against them that at the end of the day I have maybe half a spoon left, but more often none or I'm deep in overdraft. As a sidetrack, maybe I need to change how I speak of this, because language matters and working within your limits and respecting your limits are two entirely different things. And – back to the main track - in tying together one epiphany to another, if you respect your limits, you ought to go through your day in such a way that you have two, maybe even three spoons left when you go to bed. Or, making it personal, I ought to do this.

How much less pain might it be in if I lived like this? And taking a look at how I work in the context of this, what kind impact might it have if I stop not when it hurts, but before it hurts? Okay, so there'll always be pain, but maybe it would be manageable pain instead of the kind that requires me to spend the evening applying ice packs and taking codeine, too exhausted to do anything but watch TV.

And then came another idea, something equally revolutionary and mindblowing. Because it occurred to me that going that close to your limits, zooming right past them and leaving them in the dust ought to be reserved for really important events, not for your everyday life.

I'm still reeling. Still thinking about how to apply it. But I think this may be the moment where I choose another path.

Friday, September 03, 2010

Words to Live By

My friend Dawn came by for our end-of-summer lunch with her daughter Lana and Lana’s friend Autumn, both about 8 years old. Overheard when they're meeting Lucy (who was ecstatic about the kids):

Autumn: cat tongues are so funny.

Lana: I never wipe off kitty kisses.

Autumn: you shouldn't wipe off any kisses.

Lana: maybe puppy slurps, but not kitty kisses.

Words to live by.