Monday, June 29, 2009


A long time ago - back when the hills were mountains - I was in graduate school, studying for my Masters in social work. There were classes in theory, classes about research methodology, classes to teach us community development, others that taught counseling skills and one of the common themes were client empowerment, the contract both parties agreed to at the start of the process - I started in clinical, before I switched to policy development, but come to think of it, that contract occurs in all levels of social work, whether it be clinical, community development or policy development. As a social worker, you are an agent of change regardless of where you work and you make a contract with the client to help guide them through to the desired change. And somewhere in my first year, when we were talking about this process, I came up with a theory of my own.

Which is summed up as follows: as a social worker, you manipulate the client (individual, community, organization) to achieve the desired change. And that's when my teacher and I engaged in about an hour’s worth of vigorous debate while the rest of the class looked on rather stupefied. Because the person teaching the class did not like my theory at all, in fact, this person got completely and utterly stuck on the term I was using, insisting that what you as a social worker did was to guide, to encourage, to empower. Yes, I said. To manipulate. Forget about the usual negative connotations of the term, take a step back and look at it. If someone contracts with you to help them through a change process, they are in effect contracting with you to be manipulated to achieve that change.

Manipulate: to handle, manage, or use, esp. with skill, in some process of treatment or performance

No. Definitely not. There was no manipulation whatsoever and I was on crack for thinking it. To which the rest of the class nodded sagely, looked at me as if I'd grown an extra head and I decided to keep said theory myself for the duration of my university career. Turned out that graduate school was more about parroting existing dogma than thinking outside the box.

If I go to a therapist or social worker with the problem that I want to change and which I have been unsuccessful in changing myself, I am asking them to take me out of my comfort zone and help me change the way I think or act and you can call that empowerment, guidance or manipulation, but as long as there is a contract between client and change agent, it's ethical practice. Getting hung up in the definition of a word that is most often used… well. The term little minds is flitting about in my brain, but that's probably arrogant.

Maybe ir's the word geek in me?

Friday, June 26, 2009

Random June

From The Harlot’s Twitter feed, the US launches drone planes to “stem the flow of drugs, migrants and terrorists” and although I agree with Steph’s “really??” statement, what captured me was this quote: “"Essentially, we're supplying high-grade marijuana through this one small rural county of 50,000 people, thanks to the border, to all of the northeast," said Derek Champagne, district attorney of Franklin County, N.Y., and head of the area's border and narcotics task force.” Well, if the DA of Franklin Country’s doing it, why are they monitoring us?

The latest random thing found in my travels around the neighbourhood that have made me apoplectic. A Banana Slicer. Which costs $6 in the kitchen store over at the Market and is it just me or is that completely ridiculous? USE A KNIFE! By the time you get this contraption out of the drawer, squeeze the banana through (and never mind that not all bananas are this exact shape) and wash it again - just imagine getting all those little slats free of bananas slime - you could have sliced five bananas with a paring knife. Fer fuckssake…

From mor, a link to the Newseum. Put your mouse on a city and the newspaper headlines pop up. If you double click, the page gets larger and apparently, if you click in the right place (I'm still a little iffy on where that is) you can read the entire paper on some of them. It's a wonder I'm getting any work done… Mor also sent me a link to an impromptu concert in the atrium of the Mayo Clinic. I want to be like that when I'm 90.

A random collection within a random post: a cat with aspirations to become a boxer. I've just discovered the Engrish department of the LOL collection and given that tortured English translations are one of the surefire ways to get me giggling, whatever time I didn't spend in the Newseum got spent here. When I was complaining about the cold, JudithNYC sent me a link to this nose warmer, which I think is a brilliant idea and Carrie posted a link to a chocolate anus which is so wrong it's right. Almost. And while we are in the nether regions, remember the awesome Durex commercial? Turns out it has outtakes.

More generous contributions from other people include Trevor sending me an article about how scientists have discovered the ingredients in witch repelling brew and a new way to resolve disputes in baseball which doesn't quite qualify as a brawl. DavidG was positively prolific in the past month, sending another great article about multiculturalism, art made from old tapes and film, my favourite saying about fuzzy days ever - not only do I intend to print it out and place it prominently next to my desk, but have been using it liberally - and this one. About cattle combustion and I know it's not funny (oh yes, it is), but that bull in the upper right-hand corner with his legs straight up in the air started me laughing and when they got to the line about the hedgehog, I just lost it.

On New Year's Eve in Denmark (and apparently, also in Germany), it is tradition to gather in front of the television and watch Dinner for One. For a very long time after we moved to Canada, we felt there was something wrong with New Year's Eve because we were missing this. And now it's on YouTube - enjoy! And speaking of being homesick, it's just been Midsummer's Eve or Sankt Hans as is known in my own country and for a couple of days, I've been humming this song, by the quintessential Danish band Shubidua, celebrating Denmark and especially the night of the bonfires. Lots of lovely pictures of Denmark to make me and a few people I know even more homesick.

And lastly, got this link from Gill Stannard’s excellent newsletter – Elizabeth Gilbert (author of Eat, Pray, Love: One Woman's Search for Everything Across Italy, India and Indonesia) muses about the artistic process and the strange things we expect from artists. Thanks Gill – this one gave me lots to think about.

Wednesday, June 24, 2009

Not That I'm Biased

I've been thinking about bias. It all started with this article by David Gorski about the Oprah-fication of medicine (link fixed). Well, it started with the Newsweek article, followed by the other one and given that I've had loads of time to sit around and think while I attempted to heal this latest maiming of my body, I did some of that.

My own bias falls pretty squarely in the science orientation, but I like overthinking things (no, really?) and in the last several years, have found myself playing around with thoughts of faith, sort of straddling the divide between the two. One of the things I find very amusing when having a debate with someone who's very science-based about things like faith is to suggest that a belief in science is as much a matter of faith as is religion. And when they start talking about evidence, the presence of same in science and its absence from faith, I've countered with the suggestion that someone who believes in a deity sees evidence of a divine presence all around them. And now you know what headspace I'm in - pushed all the way out to the boundaries and trying to step over the line. Maybe it's the codeine?

I'm also very much in agreement with the two articles in terms of Oprah's responsibility when it comes to giving wingnuts a platform without an opposing view. It's not enough to claim that one's viewers are intelligent enough to do their own research, but on the other hand, Opera isn't news, Oprah's entertainment. And in a world where even the news isn't real news anymore, maybe it's not entirely Oprah's fault. But that's a post for another day.

I find it fascinating that Gorski's article - okay, so it's more of a rant - has much to say about Oprah's bias and yet, I got the sense that he's pretty oblivious to his own position having just as much bias. Aside from the "belief" in science, he has an obvious and almost virulent bias against homeopathy, lumping it into the same category as e.g., anecdotes being more important than clinical trials in determining efficacy of treatment, yet homeopathy is accepted by many as a legitimate form of treatment, e.g., in naturopathic medicine. He also sneers fairly effectively about the concept of qi (the energy flow along the meridians in the body), an integral part of Chinese medicine, including acupuncture. This it reminded me of when I was about 12 years old and in a rehab hospital where they were trying to get my RA under control (and failing). My mother would take me to acupuncture treatments on Monday mornings before she drove me back to the hospital after a weekend home and the doctors and nurses were very obvious about their disdain for this quackery. Despite the fact that I left the hospital every Friday afternoon in a wheelchair and on Monday mornings, would walk back into the ward. Thirty years later, acupuncture is an accepted practice, used by not just doctors of Chinese medicine, naturopathic doctors and chiropractors, but also physiotherapists and doctors educated in Western medicine. So I'm aware of the impact of time in changing perceptions about treatments, some making the shift from ridiculous snake oil to legitimate.

Aside from the fact that Gorski appears to be a little out of touch, he demonstrates the bias so clearly that it's obvious his brain is completely shuttered when it comes to anything but Western medicine. Except for him, it's not a bias. He's talking about The Truth and in the way the article’s written, it deserves the capital letters, as well as the label of bias. That doesn't mean that I don't think some of the theories mentioned in the article as examples of the nutbars who hold forth on Oprah are… well, shall we say they could benefit from a little bit of scientific objectivity. But that's also a post for another day.

The theme continued when I picked up The Not So Big Life again and was reading about how personal bias influences how we see and interact with the world. True enough. However, when the author went on to say "when we learn to see reality with true objectivity," I was again struck by this idea of objectivity is possible. Because I'm not sure that it is. Which finally gets me to my point and yes, I'm aware it took a while to get there - again, I suspect the codeine.

Our personal experiences, our histories, our culture, our families, our friends all colour how we see the world. To get really basic, I have a pair of pants that I think are turquoise, but others see as blue. If something as simple as the colour of my pants can create a divergent view of reality, what about the rest of the world? And although the goal in any scientific inquiry is to get rid of as much bias as possible, we all know that it is virtually impossible to get purely objective. Which, if you do push it all the way out to the outer boundaries and step over the line, quite possibly means that there is no ultimate Truth, only opinions.

And now that I've made my brain hurt, I'm going to spend the day in the park with a book.

Friday, June 19, 2009

Visual Hold Music

Have managed to injure myself again - neck this time, just to keep things fresh - and staying away from the computer has become essential to my happiness. Imagine muzak and look at the pretty flower. And ant (or whatever that is).

Thursday, June 18, 2009

A Beginners Guide to RA: How to Be a Self Advocate

The latest Beginner's Guide to RA is up at HealthCentral:

"In communities of people who have chronic illnesses like rheumatoid arthritis, you often hear advice about becoming a good advocate for yourself -- how it is an essential part of navigating the health care system and contributes to living well with chronic health issues. Self advocacy won't cure your RA or reduce your pain levels, but it will help you to represent your own interests within the health care system, ensuring that the decisions made are best for you. When you know what's happening is the best option for you, you feel confident and more in control of your life and that can help keep your stress levels down. But how do you advocate for yourself?"

The rest of the post is here.

Wednesday, June 17, 2009

Good Cripple

Not too long after Beth and I first became friends, we had a conversation about a meeting she'd had with an agency that were supposed to help her get equipment (possibly Dragon?). Beth explained how she'd started the meeting by outlining the goal of the conversation, setting an agenda of sorts to be that she would leave with Dragon at the end of the meeting. At which point I started laughing so hard I cried and couldn't speak for several minutes.

Beth was used to navigating the able bodied world, a world in which she occupied a position of some power, having a PhD and a number of other advanced degrees and once she acquired a disability, she approached meetings with agencies mandated to help her in the same way she had approached meetings in her previous life. And got nowhere. Until our conversation, no one had told her how she was supposed to act. Because when you have a disability, the expectations are different. And to hear the way "normal" people interact with the world was so discordant that I could only laugh.

Say you approach a staff of an agency mandated to provide you with equipment X and funded by the government to do so. As such, it is your right to receive the equipment X, but in order to get your hands on it, you have to jump through the hoops. First, you have to demonstrate need - shouldn't be a problem, right? After all, it seems reasonable. Except no one told you just how intrusive the questions will get, intrusive to the point of irrelevance. Any contact with the agency should be done with the mien of a grateful supplicant receiving unexpected charity and if you can gush about how miraculous it is, even better. To help you get what you are entitled to get and what the agency is mandated to give you, make sure you phrase any communication as a request, acknowledge that the staff is doing you a "favour," remember to tell them how much easier they are making your life and how grateful you are for their assistance. Once you're done doing that, tell them again.

I hadn't realized how deeply ingrained this role had become in me until Beth started tilting at windmills, writing about her experiences in a way that exposed a system created to be unequal, designed to reflect a charity model even within a social welfare system which claimed that receiving such equipment or services was my right. Sure, on an academic level, I knew, have even written papers and articles about it, but I didn't realize the true depth of it, because I've been in the system for most of my life and working the system and the people within it has become second nature. Whether I speak to doctors, nurses, receptionists at a doctor's offices, attendants, management of various service agencies and you get the general idea, I am nice, I am grateful and I make sure that people feel good about giving me what I need. There is nothing wrong with being polite and treating people well. Not at all - in fact, I've been brought up to treat people the way I would like to be treated and it's a fine life philosophy. The problem is when groveling becomes a necessary part of accessing services to which you are entitled. The problem is when if you don't grovel, people start withholding that to which you are entitled.

I don't know if it comes out of the medical system that likes to speak of patients as being compliant or from the social welfare system growing out of the charity model or a combination of the two. All I know is that when you have a chronic illness, doctors like it when you do what you're told. If you start asking questions, they’re not happy and if you treat them as equals, they're really not happy. This past week, Beth experienced yet another trip down the rabbit hole when she was trying to get yet another doctor to accept her as a patient so she can get an expensive treatment for which she has already been approved, but which requires her to have a GP. In the office of a very strange doctor, she yet again hit a wall, but this time, the doctor actually said “[i]f you try to argue in the slightest, I will not send off this referral at all!” brilliantly encapsulating the prevailing attitude of the medical profession and service organizations towards people who are ill or disabled.

If you're not a good little cripple, you're screwed.

Monday, June 15, 2009

Wonderful Woofstock

After last week's extended detour into frustration, I decided to have a completely sybaritic weekend in which my activities would be entirely decided by my Id. Which twice led me to Woofstock (and I consider it a small miracle that I made it through two days of the largest dog festival in North America without getting dogpoop on my tires). Click photos to embiggen. There were small dogs

Big dogs



Apprehensive dogs

Dogs who quickly figured out to milk all the attention

Dogs dressed for the occasion (the accessory of the year apparently being aviator goggles for smaller dogs - why??)

Colour-coordinated dogs

Drooly dogs

Hot dogs (summer arrived yesterday. No socks!)

Dogs who decided to be So Done With This and flop down on the sidewalk

And dogs who achieved elegance while resting in the shade

And then I cam home to this look

and spent the remainder of the weekend appeasing Her Royal Catness for my treachery. My Id was okay with that.

Friday, June 12, 2009

Sitting in Judgement

The last couple of weeks have been ridiculously hectic - it seemed that Mercury retrograde moved smoothly and seamlessly into whatever astrological phenomena is responsible for a mass epidemic of idiocy. Truly. There were several days last week where the barrage of idiots (and their attendant emotional upset) took over every day, to the point where last Friday, I moved so fast I got as much done in five hours as I normally would have in two full days and in retrospect, going into hyperdrive like that is a really good sign that I'm about to crash. Of course, I never realized it until I hit the skids in a rather remarkable fashion and the combination of having to help fix several situations rightnowthisveryinstant and a particularly busy list (some weeks, there is no prioritizing, some weeks all of it is really necessary) created a really weird situation.

By Monday, I felt walled up to the point of not being able to connect properly to others, seeing the world through a thick wall of glass where everything was muted, everything was distant, everyone I knew looked a little like a stranger. To be honest, it was more than a little freaky, but then I figured out that the walls were a last-ditch attempt to protect myself, that I had crashed, so I called in sick to my life, took pictures of flowers and slowly found myself again. It also helped that thanks to an adolescent male driver sharing his music collection with the rest of the neighborhood, I remembered the healing power of good metal, got Enter Sandman from iTunes and cranked it while singing along at the top of my lungs. More than once. Trust me, it works. A few times, I've actually cured migraines by listening to thrash metal - not deliberately at first (my sister used to have friends who had a band), but it sure can blast your brain clean.

And then on Tuesday, I received my usual forward of daily Buddhist wisdom from my mother (who receives it from Beliefnet) and it said

"He who treads the Path in earnest sees not the mistakes of the world; If we find fault with others We ourselves are also in the wrong."
- The Sutra of Hui Neng

Sometimes, it's like being hit over the head with a 2x4.

I used to practice a sort of adapted form of Buddhism more than I do now. It was a great help when I was in a lot of pain, but these days, now that I don't need it so much anymore, I seem to have forgotten. The rush of life has made it hard to slow down enough to think it through as much as would probably be good for me. And being too busy to practice, I'd forgotten that leading with kindness isn't just for people in pain, people in need, but for the people who annoy me, too.

And it's not that I was rude to these people - I dealt with them and the situations with the professionalism and civility I usually exhibit, because to be anything but when you're committing things in writing is just plain shortsighted (especially when you have an ongoing working relationship with aforementioned idiots). It was the way I felt about them, it was the ranting I did when I called up a friend and asked for a stress sponge moment, believing that having that rant would allow the stress to leave my body. But I'm not sure it did. I'm not sure that the buildup of negative emotion that started with me naming the individuals in question idiots, continued with resenting how they occupied so much of my time that should've been spent on other things and ended with ranting more than once about the whole thing didn't cause more damage to myself than the idiots themselves did and contributed significantly to the crash.

Where were my choices in this situation? Aside from the particulars like how based on my history with this particular organization, I could've foreseen that doublechecking information would not be sufficient, had I taken a moment to step back, to breathe and to choose deliberately, I may still had ended up devoting several days of my week to the frustration, but would I have been as resentful? Did I lose control the moment where in my frustration, I started using a term as judgmental as idiots? Is that the moment where I blindly started using my energy overdraft? And how much of that overdraft had I used on thinking and ranting about the situation?

In retrospect, I vaguely remember thinking I didn't have time for this, didn't have the energy, but it's hard to hear the warning bells when you're moving really fast. It occurs to me that since I didn't listen to myself, didn't pay enough attention, maybe I am the one who is an idiot, however, over the past few years, I've learned the hard way that being judgmental of yourself is just as damaging as judging others.

This was a reminder. A reminder to move more slowly, a reminder to take those extra 30 seconds to take a deep breath and plan carefully. And most of all, a reminder that leading with kindness is not just for the people who “deserve it” and that it cannot be done on autopilot.

p.s. I have no idea what's with the font, why it changed and why it changed back. I'm working on it.

Wednesday, June 10, 2009

Tink Weekend

My lovies came by this weekend, along with their staff (Janne and John). It was the family celebration of John's birthday - birthday boy here seen with cake, Janne and Liam's arm.

Liam had great fun with blueberries

Morgan cuddled with a Schnauzer puppy (ed: plush, not real) gifted by Mormor (grandmother in Danish)

Big squeeze from Daddy.


Did I mention the blueberries were a lot of fun?

Morgan observes from new angles

Yes, horribly blurry, but this photo of the kids playing with John does something to me, I think especially because it's blurry.

This hollow in Liam's neck just makes my heart ache

The girl with the thistledown hair. Composition partly, shamelessly - and unconsciously - plagiarized from Michelle.

Note: attempted to do a scheduled post as remainder of week must be spent on work. Published today for some reason, so I deleted it again. Sigh. It'll reappear on Friday.

Monday, June 08, 2009


This is completely ridiculous.

We've had a cold spring up here in Toronto. When I say cold cold, I mean about 10° colder than the seasonal average and that's in metric, not Fahrenheit. I heard a reliable report that last Monday, it snowed in Huntsville (which is about 150 km/100miles from Toronto). Snow, I ask you! On June 1! As I may have mentioned once or twice, June 1 also marks the day where according to a City of Toronto by law, landlords no longer have to provide heat. Usually, by the time this date arrives, my entire building is sweltering and we all feel like hugging the superintendent for finally being able to cool down the apartments. This year, not so much.

Because there is no heat on anywhere and because nights are downright chilly with single digits (e.g., 44F), the entire building is cool. The fact that the hallway vent is close to my front door and emits galeforce arctic winds doesn't help either, but we can't turn it off, because then there's no oxygen circulating and trust me, I'd rather have it be cold than stuffy. And cold I indeed have - between the air outside and the arctic winds whistling under my front door and somehow manage to swoop around two corners and hit me as I sit at my desk, all of me is cold all the time. A week ago, I relented and got out my winter pants. The next day, I grabbed a winter sweater, the day after I added a blanket on my legs in the mornings and still, somewhere around Thursday, I couldn't focus on work because all I was aware of was how cold my hands were. So I got out Karin's wrist warmers and then it was just my fingers and my nose that felt numb.

Where did my weather influence go? I used to be able to make it snow (much to RachelH's chagrin), but no matter how hard I try, I can't make it warm. Or maybe my influence has done a 180? Two weeks ago, I got out my summer clothes and put my winter clothes away and instantly, we had an overnight frost warning. Coincidence?

One of the side effects of Humira is warmth and it was one of the first things I noticed about it. About half an hour after my first shot, a rush of heat swept through me and it's been particularly helpful for my fibromyalgia - the warmer you are you are, the less the pain. However, that's not helping now. I have lovely, bright summer clothes I can't wait to wear and instead I've crawled back into dark and wooly. Don't get me wrong, I love my handknits, but not in June. In June, I'm starting to look at summer dresses and no longer wearing socks. In June, I start spending a lot of time in the park and these days, even with a sweater, you can feel the bite in the air. In fact, in the last two weeks, the only times I'm warm is when I'm in bed. Which albeit comfy is not conducive at all to getting anything done.And I am just a little resentful.

And is it just me or is this entire Post o’ Cranky extremely dull? (don’t answer that)

Before I take my aggrieved self off for the day, a couple of notifications. A year and a half ago, I won the 2007 Larry Turner Award for Nonfiction (the page is wonky, but my name used to be there) and the anthology in which it appears has just been published - if you're interested, there are a limited number of copies available. And also writerly, Laurie’s Toronto booklaunch is this Thursday at 7pm at the Toronto Women's Bookstore. If you're in town, please come on out and support her.

Friday, June 05, 2009

Nightly Mayhem

I have a pretty lively nightlife. And not of the kind usually referred to when someone says a sentence like that. No, I am a creature of habit, usually staying at home in the evening, entertaining myself with bugging the cat, watching a movie or reading and occasionally hanging out with friends. I just read that Quinn's latest post about stepping out of her comfort zone and felt an increased kinship with her, nodding in familiarity with her description of being most comfortable reading about adventure while remaining safely within her routine - I'd invite her out for coffee, but not only do we live on opposite sides of the continent, but it would also require leaving home. Some people may think me boring, I prefer to say that I know what makes me happy and although there are times where little bit of adventure is welcome, mostly, low-key works.

However, once I go to sleep, this changes dramatically. For as long as I can remember, my dreams have been highly adventurous, highly active and highly weird. Sometimes I’m myself, sometimes I'm other people - women, men, vampires, once even a dog - and always, there's enough happening to fill several action movies (maybe Hollywood should come to me to breathe some life into the rut they seem to be in). And then, there are my theme dreams. Not recurring dreams as such, but recurring themes and I've learned that when I start having those kinds of dreams, my subconscious is trying to tell me something. My Punching Jell-O dreams mean that I should stop trying to fix a particular situation, because no matter what I do, it won't get fixed. When I dream of tornadoes, I know that it's a sign that my life is out of control and I need to step back and reassess. I once dreamt of being able to breathe underwater, but never found out what that was about. And lately, in the past month or so, it's been murder and mayhem.

Almost every night, I have a suspenseful and/or bloody thriller going on. There was a murder mystery on the Galapagos Islands, being on the beach in Normandy on D-Day and you get the idea. They don't necessarily qualify as nightmares, although there has been one or two where I woke up, heart pounding, convinced that if I wasn't completely still, someone or something would get me, but usually, I just wake up going 'whoa', marveling at yet another manifestation of intrigue, espionage, murderous intent, intricate plots and the sheer variety that my brain comes up with. Because they are all different, not a repeat in the bunch.

Clearly, my subconscious is trying very loudly to tell me something and I have no idea what. I do know that I'm ready to dream about something else, because regardless of how exciting each individual dream is, I'm starting to get a little bored.

A friend suggested that it sounded like I was feeling very anxious, but I don't think any more so than usual. Admittedly, I am not always a calm person and I have an Olympic-sized ability to worry, but I'm pretty sure I'm actually feeling less anxious than normal. There are no mysteries in my life that I'm currently trying to work out and I don’t feel the urge to throttle other people more than a few times a week. So, normal.

But I think I might finally have begun to figure this out and it's all thanks to Jung. I was discussing the nightly sojourn into action movies with a friend and remembered in second-year university reading about personality theories, more specifically Jung who - and forgive any inaccuracies, it's been a while - posited that your dreams will try to balance out your life. In other words, if your life is out of balance, if you're missing a particular activity, feeling, etc., your dreams will try to make up for it. Was I missing intrigue?

I thought about it some and realized that in the past month, I've been watching less TV -the season is over and I'm overjoyed to get my life back - and, more importantly, reading less. It's been a busy month and I'm attempting to balance my life to include less focus on work and more focus on work and personal life, so I've been catching up with friends, getting derailed on the computer and barely reading. When I read, I tend to go for entertainment and often there's some element of mystery in the books I read, sometimes supernatural, sometimes fantasy, sometimes science fiction and maybe my brain is missing that?

Alright then. In the last couple of days, I've made more of an effort to find time to read and selected a thoroughly satisfying book with plenty of mayhem. And last night, I was trying to escape from a prison while being chased by some evil guy who wanted his baton back, but if I gave it up, I would never be able to prove my case, so I fled in a red pickup with him breathing down my neck and…

Back to the drawing board.

Thursday, June 04, 2009

Reality Check

The search for balance continues in my latest HealthCentral post. And I may be on to something...

"It had been another night of bad pain, of the kind that makes you rock back and forth in an attempt to block sensation with movement, even just a little. I'd had bad nights for weeks, each night a little worse than the one before, at first just aching stiffness, then needing painkillers, then blasting through the wall of painkillers until all I could do was rock."

You can read the rest here.

Wednesday, June 03, 2009

On the Other Side of It

On and off through my life, there've been periods where my pain levels were so high they coloured everything, lent a patina to everything I said, everything I did, sometimes a smudgy grey film, at other times, a blinding scream and when you're inside of that, there is no stepping to the side to get perspective. There is just somehow getting through it and it can be the loneliest feeling in the world. The people who love you will try to support you, will try to listen as you talk about the pain - because it's hard to talk about anything else - but it is one of those moments I spoke of in my last post where you are completely alone, as alone as we are in death. Your loved ones can stand by, can hold your hand, but ultimately, it’s not an experience that can be shared. There is only you and the pain and whether you get through it with your sanity intact and sometimes, that's doubtful.

A long time after my big flare - sometimes, I think I should capitalize that, it's become such a reference point for so much of what I have learned and lord knows, I link to it often enough - I posted about the experience and about getting my life back and Steph left a comment saying that it was hard to watch.

And this is how self-absorbed you become in that place. It had never occurred to me that this hard time of mine had been hard on others, too. Well, that's not entirely true - of course I knew that the people who cared about me wanted more than anything to take the pain away, because they said so. They told me they wished they could take the pain and carry it for me, even for a day - to which I usually replied that so did I - but the pain was so loud that I couldn't see their experience.

They gave me love, they helped me with practical things, they listened to me talk about the pain a lot, because when you're in that place, talking about it helps, somehow reduces the misery and mystery of it as little. Sharing makes it easier, give you the illusion that for those minutes where someone listens to you or holds you, you are not alone, that they do indeed carry it a little and it is only after that you realize again that no one can. That the only people who truly understand are people who have been in this much pain, that these are the people with whom you can be truly honest, truly show the darkness, because people who are not in pain can get scared by how black it gets and because you love them, you want to shield them from the full experience. But people who’ve been there? Who are there? They know and it doesn't frighten them.

I'm thinking of this for two reasons. One was a post on HealthCentral from someone in such deep despair that death seemed a viable option. She's better now, in large part because she went off the medication that seem to cause this depression, but also because she could be completely honest on the site in a way she couldn't with her loved ones, because they couldn't truly understand. But most of all, I am thinking of this because of a post Beth wrote on Monday about her pain, her experience with the pain and how deep into primal it can go. And it doesn't frighten me to read about her pain РI can hack hearing about pain and besides, if she can live through it, I can certainly hear it - but it frightens me for her and I find myself on the other side of it, knowing how the people in my life felt. Knowing the helplessness, the deep desire to take her pain, if even for a day, because sometimes, a breather can get you a little ahead in the coping. And it feels like such a little thing, such a trite clich̩ to tell my friend that I wish I could take the pain for her and carry it for a while, because I can't. I would, in a heartbeat, but I can't and seeing a person I love forced to be alone in a place of torture when I am (metaphorically) standing right next to her, willing to help, wanting more than anything to help, wanting to wrap myself around her, somehow absorbing the pain through physical contact, but unable to bridge the gap and be of use, unable to give her room to breathe. Being able to do nothing but bear witness, to tell her that I am here and what the hell good is that?

Steph was right.

Monday, June 01, 2009

Reason #763 I Love Living Downtown

Not just events like Random Fun, but more organized, like the second annual Toronto Criterium - a bike race to kick off the city's Bike Month. There's a kids' race, an amateur race and it all ends with the Pro Race, a 1 1/2 hour plus 5 laps race within easy walking distance from my place (reason #764 I love living downtown)

Spectators lined the sidewalks and a police officer helped keep people from crossing the street when the racers came. In between those times, he chatted with people, kidded around with the kids and checked out photos

And then the racers came

And turned

After 30 minutes, this guy was two laps ahead of the rest and I went home before the buckets of rain started

And speaking of bikes. Ken is doing the Friends for Life Bike Rally for the Toronto People with Aids Foundation, spending a week in July riding from Toronto to Montreal. If the spirit moves you, please go sponsor him.