Wednesday, September 28, 2005
We're having Danish relatives visiting these days. Above, from the left, is my mother ('mor' of the comments), Hanne, her niece/my cousin (via my mother's sister), Hanne's daughter Christina and the little guy in the stroller is Christina's son, Sebastian. Photo taken by Janne at Niagara Falls.
And just because he's one of the cutest kids I've seen in a while, here's a close-up:
Monday, September 26, 2005
When I was a little girl, my uncle Poul used to call me Krudtirøv. It means – very literally translated – gunpowder-in-arse. I moved fast. Still do. For me, Instant gratification isn’t fast enough. I’ve often said that if there’s such a thing as karma and reincarnation, my task in this life is to learn patience. I’m not doing very well with the lesson.
Recovery’s an odd thing. No, not that kind of recovery, by which I mean the addictive one, although I suspect that’s plenty odd, too. I’m talking about something as basic as a physical comeback. My life was eroded slowly, by bits and pieces and now I’m working at getting it back. It’s been slow going, often too slow for my taste. It goes in fits and starts and plateaus. I have to remember to slow down, be mindful of my damaged body, listen to it and work well within my limits. Because if I don’t, I injure myself.
Seems like the injuries come in fits and starts, too. I’m starting to realize that there’s a pattern for when I wreck myself. It comes after a while on a plateau – I’ll have looked around, taken in the view, thoroughly enjoyed where I’m at, gotten a little stronger and then… then the longing for more hits. Always more, always grander schemes, always itching to keep going. And that’s when I forget about having to haul around this fragile shell in which I currently reside, do a little (or a lot) too much and then get stalled out while I heal.
The past week has been bad for it. First, I wrecked my right shoulder (which then migrated along my entire right side), then a couple of days ago, the left got a hit and now I need to sit very still for a while. And all that’s in my head is a voice yelling about how I don’t have time. I’ve got years to make up for.
Eight months ago, when where I am now seemed an unattainable goal, I dreamt of this. Now, I dream of more. More strength, more energy, more space in my mind, less aches, pains and creaking, less need to rest, just get out of my way, I’ve got things to do!
These days, I long so much for the next step that I sometimes forget to enjoy the present. I try very hard to remember that every day is a gift. I try to grok that I am exactly where I am supposed to be and that the rest will come in time. That life is a journey, not a destination, and if you’re too busy looking ahead, you’ll miss the stunning beauty of the now.
But today, as I force myself to sit still and heal, I’m straining at the leash.
Friday, September 23, 2005
Yesterday, things were OK at first and then they went spectacularly in the crapper. Well, that’s a bit of an exaggeration – my grandfather used to say “it’s a bad storyteller who can’t improve upon the story”. More or less directly translated from the Danish, so pardon the slight inelegance of the saying. “Det er en daarlig fortaeller som ikke kan goere en historie bedre” sounds much better, but I suspect very few of you would understand it.
Got my place cleaned with no incidents. Then I left the house. That was my first mistake. Clearly, I should have hermitted. Yes, it’s a verb. In my world, anyway.
Go to get my shot, get in the elevator. Elevator gets stuck between ground and second floor. Did I mention I’m claustrophobic? I try to not hyperventilate (mostly unsuccessfully) as I’m stuck for what seems like days (in reality, more like 10 minutes). Wait at doctor’s for shot, she runs late, have to come back. Pop to grocery store to pick up jam – my favourite jam. Jam that’s not so sweet you get insulin shock from having it on a piece of toast. Hero jam. Grocery store doesn’t carry it anymore. BASTARDS! Go home, muttering to myself, automatic door opener on front door of building not working. Wait outside for several hours (ok, minutes) to accost a stranger to open the door for me. Am at least somewhat grateful that it’s noon instead of midnight, at which time it gets unnerving to accost strangers to open doors for you. Ask me how I know this.
Go back upstairs, upgrade my iPod. Why I had the guts to do that on such a day is beyond me, but it seemed to have worked alright. Back for shot at 2, one hour later find out that Enbrel and ragweed season are so not compatible. It was at this point that I decided to call it a day and start over. Today, so far, so good. Of course, it’s fairly early yet…
p.s. I believe this post is what’s commonly referred to as “phoning it in”. We’re having Danish visitors and I don’t have time (or brainpower) for something scintillating.
Thursday, September 22, 2005
Tuesday, September 20, 2005
Tonight is the finale of Big Brother 6 – arguably the best Big Brother of the bunch (and sure, if you consider the first season, really not a difficult feat to accomplish, but nonetheless, this one kicked arse). The Fiendship-Sovereignty battle, see-sawing every week, kept me on tenterhooks and thoroughly addicted.
There was Kaysar (swoon), Cappy with his ‘roid rage and delusions of grandeur (and who “doesn’t regret anything he did – it’s just who he is”, despite being forcibly restrained from starting a fistfight. Great role model to your kids, dude), Janey – pretending to be a ditz, but one of the best reality show contestants I’ve seen in a while, targeted for eviction almost from the word ‘go’, but still managed to be in the final three (and author of the classic line ‘Bye Bye, Bitches!’). There was Yapril, gossipy, prone to weeping and owner of the worst cry-face I’ve ever seen, Beau… er… (I’ve got nutthin’)… Beau… um…winner of Best (and Most Frequent) Squeal Award, Michael – booted early and unfairly because Cappy got it in his teeny head that there was sexual harassment going on, Ashlea… again, I’ve got very little, but she’s a friend of Janelle’s and therefore alright in my book. Sarah – sweet, naïve and completely redeemed her nauseating In-Lurveness by her “Bye Bye Bitches” t-shirt. Rachel, who was easily the most adult of the houseguests and lovely to watch as she unravelled in her hatred of Jen in the jury house, James – masterful at playing both sides and record veto winner. There was Horndog Howie. Howie, Howie, Howie. A gibbering idiot when the camera’s on him, surprisingly articulate when not. Also single-handedly engineered the demise of the Sovereign 6 when he handed his balls to Naggie on a silver platter. And Jen, who I will forever loathe for her betrayal and rationalization of “I didn’t lie, I just broke my word” (what???) and target of much fan-based hatred.
Which brings us to the final two: Naggie and Evilette. Oh ok, I’ll be a tad more dignified. Maggie and Ivette. Who will win? Who should win? I read a comment on a forum which claimed that when Kaysar was asked what he’d do if he were on the jury and asked to vote for one of them, he said “walk out”. Did I mention I love Kaysar? Except – darling? Get rid of the gunk in your hair. Doesn’t work for you.
I will reluctantly admit that Maggie played an excellent game. She put Eric as the titular head of the Fiendship cult and sat back, lurking like a spider in the middle of her web and masterfully manipulated everyone, while preserving an image of motherly near-saintliness. But she gives me the willies – her sanctimonious insistence on her own morality and overall wonderfulness, when she so clearly is a hypocritical, judgemental and manipulative person has made me want to barf more than once. Ivette… well, I love that a Hispanic lesbian might win a reality show (the whitest, straightest world). On the other hand, the woman’s a racist and in general just nasty. Can’t wait to see them grilled by the jury. And I would pay money to see the faces of the cult when they find out that America hates them.
Lastly, our hostess with the mostest: The Chenbot. Fantastic job, Julie, although I’d love to see you ask actual questions. I thought you were to be a reporter? How about probing a smidge, trying a pointed deconstruction of particularly idiotic contestants? And as a special treat, for those among you who don’t know why fans call her The Chenbot, check out TVgasm’s brilliant compilation of all her “but firsts” of the season.
And no. I still don’t know whom to root for. Although I’ll be watching, I’m mentally joining Kaysar and walking out on the decision. Well, and maybe to snog him in a corner while everyone’s busy.
Friday, September 16, 2005
Nice, eh? (please ignore the clutter. I'm thinking about cleaning)
The next day, when I called my mother, she’d developed Niagara symptoms, along with a set of eyes that looked as if she’d been crying for weeks. After some discussion, we hit upon the flowers as likely culprits (neither of us had been up long, it took a while) and out they went.
Later that day, I wondered idly what ragweed looked like. Click here.
Feel free to laugh.
Update: it's been brought to my attention by people more horticulturally inclined than I that this is likely not ragweed, but goldenrod. They seem to look alike. Apparently, I am allergic to that, too.
Wednesday, September 14, 2005
A recap of the weekend’s sillier moments…
Friday evening, I was watching a movie and suddenly, out of the corner of my eye, I saw a red dot dancing on the chair beside me. These are the thoughts that went through my head in rapid succession:
1. I’m having a stroke.
2. No, that looks like the red dot from a sniper’s rifle.
3. I’M GONNA BE SHOT BY A SNIPER!
I have a bit of a vivid imagination… Turns out some idiot living in the building facing my livingroom had gotten himself one of those laser-pointing thingies and was amused by invading my privacy. Or so I rationalized.
The next day after a fantastic dinner at my mother's, John and I attempted to re-create his halluc… er, idea that Janne’s wearing Homer Simpson’s head under her shirt:
It's a work in progress...
Although I was busy looking at her mid-section and can't say for sure, I believe Janne lived through this moment as a practise for having children. I'm pretty sure there was eye-rolling.
Monday, September 12, 2005
In December of 2004, I looked into the abyss and the abyss looked back.
It’s hard to write about this – doing so with any emotional truth means going back to a place I’d rather never feel again – but there’s something I’ve wanted to say for a long time and it needs a bit of a back story.
Pain is an oddly isolating thing. It can’t be shared with other people, can’t be described in any way that comes close to communicating what it feels like. It isolates geographically and socially – it hurts too much to go out, spending time with friends takes too much energy and when touching hurts, displays of affection do also. When it gets loud enough, you lose your ability to think and focus.
Early on in 2004, when my arthritis was flaring, my rheumatologist and I decided it was time for the big guns. The biggest, in fact. Enbrel is new and expensive and costs about $23,000 a year, so I needed help from the Trillium Drug Program. When the government gives you tax payers’ money, they’re careful. So as my application slowly meandered its way through the bureaucracy, my life gradually went belly-up.
Things were getting steadily worse and in September, Vioxx – the only anti-inflammatory that I could tolerate and which kept things somewhat tamped down – was recalled. My arthritis flared stronger, blazing unchecked through my body, destroying my joints even further. Painkillers only masked the symptoms and only partly, without preventing the damage.
I’ve struggled with finding a way to describe my life at that time and I don’t have the words for it. There’s no way of talking about it that doesn’t sound like melodramatic hyperbole. I felt like my body was disintegrating, shutting down. It was every kind of pain I’ve ever had and all at once. Pain wrapped me in a sheath of flexible, frosted glass, muting the words of loved ones, a foggy barrier between the world and I, slowly closing in, narrowing my world until I felt shrink-wrapped by it. I felt as if I was a prisoner in my body, held in a far-away place, tortured around the clock, screaming, screaming, screaming, too far away for anyone to hear me and even if they did, they could do nothing to help me.
Christmas is my favourite holiday. Throughout my life, it has been magical, each year feeling like somehow, my family and I enter a parallel reality, one where love is palpable and radiant. Last December, I knew it could be my last Christmas, that my life, as it was, could very soon not be there anymore. I knew that if I didn’t start Enbrel very soon and if it didn’t work very quickly, my life was over. I knew that at in tops 6 months, I’d either be hopped up on morphine in a nursinghome or perhaps my body was indeed shutting down. I felt as if I had terminal arthritis.
I have never been so aware, so fully conscious of everything as I was on Christmas Eve. I opened up as far as I could and absorbed the laughter, the love, the joy in the room and put the memory in a special place in my soul, for comfort, for remembering, to be a safe place to go if I had to leave.
By New Year’s Eve, I felt erased, stripped, burned to a cinder. The pain had taken everything.
Shortly after New Year’s, I was approved for Trillium and on January 7, 2005 at 3:35pm, I received my first shot of Enbrel, went back home for a rest and at 6pm, I woke up a different person.
It’s as simple as that. And as complicated.
Enbrel worked quickly and changed everything. Within a few weeks, the pain levels had subsided drastically, the swelling went down and I became stronger and stronger. Every day, I realized a new thing that I could do and I would laugh and laugh with the joy of it.
Then it spread. As much of the pain left, there was enough room in my head that I could think again, remember things again. I was hungry, starving – for knowledge and for food. I could eat again, things I hadn’t been able to eat for ages. As time passed, my body developed an almost aggressive quest for health, wanting only real food, craving protein and rejecting sugar (I haven’t had a cookie in six months). Strangest of all, how I see things have changed. The world went from black-and-white to technicolour and everything seems a miracle of perfection. Once, when shopping, I was nearly brought to tears by a pepper, such a perfect blend of yellow and orange that it looked like late afternoon summer sunshine in a February pepper. I regularly get lost for hours looking at blade of grass or a feather or the sun glinting off water.
It’s overwhelming. I feel reborn, new, vulnerable, raw, open, intense. Everything’s so intense. I don't know how to be this aware of the beauty of the world and still be a well-functioning human being and so sometimes, I hide in the old me for a few weeks while I catch my breath, then jump back in and fly.
Last year aged me. I feel older, look older – my face is marked by lines that didn’t come from smiling. I feel fragile still. It scares me how long it is taking to get my body back to where I want it to be, it makes me realize that I didn’t just feel like I was very sick. I was very sick.
At times, I get besieged by abject terror at the thought of losing it all – I am not yet done with this gift. At times, I want only to hide from it – it’s too much, too strong, too deep a mystery. I feel as if I’ve been razed, burned to the ground, had nothing left but ashes and then… then someone gave me back my life and a second chance. I take my second life seriously. I see myself as under construction, body and soul, becoming the person I’ve always wanted to be. I work hard to become healthy on all levels, to change and grow every day, to be mindful of the glory of it all and to not resist change, but embrace it.
Mostly, I am madly in love with being alive, delirious with the ability to think and communicate ideas and truth be told, probably a bit unbearable. I feel drunk with it and as most drunks, I have a lot to say.
Every time I get a shot of Enbrel, I send out a silent thank-you to the taxpayers of Ontario.
I am your tax dollars at work.
Thank you for my life.
Thursday, September 08, 2005
Tuesday, September 06, 2005
I’ve always had an affinity for New Orleans. Its history, its culture, its music, its food, its insistence that if we’d remember that life is for living, not just hard work, then maybe we’d all be enjoying the ride a bit more. For 20 years now, I’ve known that some day, I’d go there and immerse myself in it all. Laissez les bon temps rouler and I’d roll with it and be home.
These days, I am heartbroken.
I search out the news and get more and more angry and more and more sad. New Orleans, the city of my heart, is devastated. The Gulf Coast region is devastated. People are attempting to find meaning in the meaningless by blaming the victim: Katrina was god’s comment on the acceptance of gays or a cleansing of “sin city” and those stories make me angrier and sadder. Tales of divine vengeance don’t help in times like these, except to serve as a balm for our collective pain – if they brought it on themselves, I don’t have to feel so bad. I can wash my hands of it, I can pass the stranger in the ditch and do nothing, because after all, he deserves his life, his home, his family, his community destroyed.
The contrast between the words and images of horrible conditions and my life is jarring. My uncle is here for his annual visit, I’ve just had a birthday that’s still being celebrated, the weather is perfect late-summer – not too hot, not too cold yet - there are children growing in my sister’s belly and life is… better. Much better than it used to be and certainly better than the hundreds of thousands of people whose lives have been shattered. The emotional whiplash is constant, dizzying and makes my head and heart hurt. I am tempted to close my eyes, to make things more comfortable for myself.
Yet I watch and read the news compulsively, carrying the stories and images with me, my way of sharing the pain. I can do almost nothing, in a concrete way. I know of a family that just got larger when they took in displaced loved ones and I will send them a cheque. But it is such a small drop in such a large bucket and I feel utterly helpless.
I am aware that I am living through history and that future generations will read about these days and wonder what would have happened if the levee repair had been funded or if help had been ready when they knew it was coming and dispatched immediately when Katrina blew out. Just as we now judge governments around the world for ignoring the genocide in Rwanda, the future will judge us, for better or worse, for our response to this, to the tsunami, to Africa dying from AIDS.
How do you find a balance between lending your ear and heart to suffering, yet living your own life and not going ‘round the bend? The temptation to withdraw into the mundane details of the everyday nags at me. It asks me if I have to feel bad about this – I have things to do, a life to lead, deadlines to meet, people to love, groceries to buy. And I tell myself that I do. I do have to feel this bad. If I don’t, if we lucky ones don’t watch, ask questions, demand action and remember, indifference will make it disappear.
So I bear witness.
And I remember New Orleans and laissez les bon temps rouler and live my life, as well.
Monday, September 05, 2005
I've just gotten my head around the back-to-school and the fall things and although it prompts some quietly desperate reaction (i.e., loud screaming), I'm OK. Mostly. But HALLOWE'EN??? On September 4?? Before Labour Day?
I think there should be a rule. Like wearing white. Can't wear white and display Hallowe'en candy at the same time. Actually, I think it's a Public Health matter. You're not sure? Don't tell me you didn't wince and feel like crying when you read the first sentence.