The Seated View

Would You be Blue?

2010-01-04T10:27:00.004-05:00

Like so many others, I am fairly fresh from seeing Avatar and aside from wanting to see it again and preferably on a bigger screen and in 3-D, it made me think. Particularlythe part about Jake, the paralyzed protagonist who is given the chance to use his body again in a 10-foot tall blue-skinned avatar and gets sent into the forest to befriend the people of Pandora.

Sidetrack: 20 years ago, I wrote a short story with a somewhat similar premise about a disabled girl who through various interesting happenings gets to try out an able-bodied life among another race and for several years now, I've been slowly expanding it into something more like a book. Except, I think my window has just closed, because anything I write will be seen as a derivative of Avatar and I am more than slightly pissed. Damn you, James Cameron!

Where was I? Oh yes, blue skin, paralyzed and using your body again.

I'm pretty sure there isn't anyone living with a physical limitation who didn't get a little wistful at this part of the movie. That first scene of Jake trying out walking again, standing on the floor, figuring out how to use his legs again after so long of not - and subsequently crashing into quite a few things - going outside and digging his toes into the soil and then running, running as fast as he possibly can and... wistful doesn't begin to describe it. I don't think there's any particular word that can be used to sum up the mix of longing, sorrow and laughing in an almost-there recognition of the giddy joy of your body doing what you want, exactly what you want, with fluidity and grace. And it makes you want it with a burning need so hot it obliterates thought.

And then you start thinking. What would you do if you could do this, if this opportunity of popping into another body, a healthy, strong and flexible body was offered to you? Would you take it? And your first (and second, third and right through 27th) reaction is Are.You. Kidding. Me??? In a heartbeat.

But then, eventually, you start to be able to see through the haze of desire and that's when I started thinking maybe not. Because real life is not like the movies, in real life, you have to come back to your own body, the one that isn't so healthy and strong and flexible. And if you have come to a state of acceptance of that real life, of being grateful for everything that is within it, of loving the people in your life, a life that is connected in a myriad of ways, thousands of unseen tendrils linking you to people and communities - because in real life, no man is an island - and it is your life and in your heart you have for it a fierce, uncomplicated love, what happens if you have tried The Other? Would you not be shot back with the speed of light to that place of grief and resentment that was your before, before you figured out that the answer to enjoying this life you are given is to largely accept your limitations and move on, focusing on living instead of wishing things were different? And when that happened, would the love for your life not cease to be uncomplicated? Once the memory of what it was like to have no limitations is with you like a second skin, would it not taint everything else and everyone else in that life you used to love, smearing them with a grey, gritty film of what could have been?

Sometimes in this life, you have to recognize that brick wall before you beat your head upon it until you are a bloody mess and sometimes, you have to let go of desire and what ifs and move on, with acceptance and joy just - to borrow a line from Bridget Jones - the way you are.

Only forward is the answer, never back.

p.s. I'm percolating a possible project that needs a bit of a team approach (bragging rights only - alas, no money involved). To that end, I'm looking for someone with graphic design experience to make a small web-based design. If you're interested, please email me at landers5ATgmailDOTcom.

You Never Know

2009-12-31T10:19:00.002-05:00

"I can't do a New Year's post this year, it'll sound like I'm bragging."

This is what I said earlier this week, heavily influenced by that Danish-Canadian thing about not tooting your own horn overmuch (and perhaps a little by the fear that if I say something out loud, it'll jinx it).

At New Year's in 2005, I wrote about buying the ticket. In 2007, I wrote about how my life was smaller than it had ever been, yet I was genuinely happy. In 2008, I wrote about how by stepping around, you can find a new road to old joys, that limits can be transcended if you change your way of thinking. And it all comes out of getting my life back five years ago, about coming very close to losing everything and in the aftermath and healing finding happiness and joy in a place so unlike what I had previously imagined would be necessary for happiness and joy.

And then 2009 happened. As I mentioned in yesterday's post for MyRACentral, comparing my life today to what I could do and was doing on December 31, 2008 blows my mind. In the past 12 months, I've gotten a new job with more responsibility, a job that is not only fascinating, but in which I actually sometimes make a difference. Between that and my own stuff, I often spend 4-5 hours a day working, easily twice what I was able to do last December. In 2008, I dreamed of being a photographer, this year, I’ve exhibited twice. A year ago, I canceled plans with friends at least half of the time, not having enough energy to follow through on what I wanted to do. This year, I’ve started seeing my friends again, actually having dinner and spending evenings with them and at the end of the evening, there is often hugging. A year ago, I had almost accepted being too wrecked to ever have a relationship again and this year, I found a life partner, a man I am absolutely mad about (and who is undoubtedly blushing as he reads this). A year ago, I was happy with my fairly small life, hoping for a bit of an increase in strength and energy in the new year, but didn’t expect the world.

And then I got the world.

In the past, I've talked about being exactly where I'm supposed to be, usually around times of difficulty, where things take longer than I'd hoped or where it seems apparent that I need to become accustomed to living in a smaller world and it's been hard to believe it at times. And now? Now would not be possible without those hard times. Without almost losing everything five years ago, I wouldn't have my now. I wouldn't have taken this road and without being razed to the ground by illness and pain, I wouldn't have been able to build the new me and my new life. Everything I have today can be linked directly back to a very dark place, everything I am today comes from that moment in my life. And if I'm grateful for the way my life has turned out - and I am, every minute of every day - I am also grateful for having been in that dark place. It and the hard journey out of it taught me more about living, happiness and limitless than any other event in my life.

I’ve just finished reading American on Purpose, Craig Ferguson’s autobiography - by the way, I can highly recommend it, especially the audio version read by the author (oh, that Glasgow accent!) - and he mentions that the motto of the Ferguson clan is dulcius ex asperis, which supposedly means ‘sweeter after difficulty’. And that rings a bell. Because wonderful is even more so when you've worked hard to get there. When you've been in a crappy place that helps you understand just how profound happiness can be. When you've been at whatever represents stuck and bottom for you and then slowly crawled out of it, done it by showing up and doing your best and keep getting back on the horse that threw you and then all of a sudden, it all comes together and you wonder how you got so lucky.

Before I was able to do my best, someone else to had to do theirs. And that was Abbott, the pharmaceutical company that makes Humira. Someone there made the decision to invest millions of dollars and likely decades in developing this drug and without that decision, I wouldn't have my now. And other people need thanking, too, because without the taxpayers of Ontario who pay for this medication, I wouldn't have my now and I still, just as I did five years ago, send out a silent thank you every time I get my shot.

You never know.

May your hard times turn into joy. Happy New Year!

Looking Forward

2009-12-30T14:17:00.000-05:00

It's time to reflect on MyRACentral:

"Have you decided what's wrong with you yet? After all, it's what making resolutions is all about, isn't it? To review your life, to find it wanting, to pick it apart and identify areas of dissatisfaction and is it any wonder so many of us get depressed around New Year's?"

You can read the rest here.

Random December

2009-12-29T11:00:00.001-05:00

The Copenhagen climate talks are over and there’s an excellent Seussian take on them. And speaking of Denmark, meet you at the airport? While we're traveling, consider this fascinating Spanish case of murder in which reality is stranger than fiction. And then there is the story of a novel approach to recruitment in the Church. The word of 2009 has been announced and according to this article about gender differences in shopping, I am extremely in touch with my male side.

From Ken, I'm reminded of why I miss Calvin and Hobbes. Gaina sent me the techno chicken (warning: it's hard not to watch 27 times in a row), Karin (I'm blonding out on your URL Karin - leave it in the comments, please?) linked to a fascinating movie about the story of stuff and mor sent a link to footage from 1927 London that made me want to time travel.

And while we're (sort of) in London, Trevor forwarded a charming picture from King’s Cross station, a rather brilliant little movie called Present Face to which you may relate after the season's festivities, a fantastic ice cream ad (not entirely safe for all audiences), one of the funniest (or scariest) autocompletes I've seen in a long time, links to two news stories of the kind that makes you shake your head: table sex and the police department branches out linguistically and if you're in the mood for having movie magic debunked, click here. Also, a new exhibit at the Zoo.

David started off in the natural world sending me this story about a leopard seal trying to help out a human, as well as this one that made me realize that octopuses (octopi?) have way more going on than you'd think. Google is at Pompei, Cuban cigar factory workers have a really good reason to go to work every day and while we are on the topic of books, a wonderful review of Going Rogue. For the low self-esteem days, check out Make Me Mighty. And lastly, two time suckers: first, Pretend Office. You have no idea. The explanation of the mailing list for Pretend Office and the archives for the mailing list. Start at the beginning. I'll see you in April. And second, the Continuity Game. Add that to Pretend Office and perhaps it will more be June by the time they pry you off the computer.

Tinkified Christmas

2009-12-28T10:42:00.000-05:00

As we walked down the street to my mother's, it was snowing. A quiet evening, crisp and cold, with gentle snow falling from the sky, leaving just enough of a covering on the ground to leave marks of shoes and tires. It was a movie Christmas moment, the kind of perfect that doesn't happen except in fiction. And then... it continued. Christmas is always somehow magic at my mother's but this year, it exceeded expectations. There was laughing and love and wonderful food and the kids were spectacularly well-behaved. And energetic.

As usual, Morgan's favourite was the cucumber salad and it was even more favourite because she and Michele fed it to each other (click to embiggen photos).

Michele was Tink Wrangler extraordinaire, teaching them the "criss-cross, applesauce" game, which they both took to with delight, testing it out on each other and the rest of us. Shiveries abounded.

And then she played horsie (gentle walking and out of control galloping). For a really long time. We're thinking of making a Tink Exercise video - great for leg muscles! Sold with icepacks and painkillers for the aftermath

There was singing. And Liam did interpretive dance.

Many, many excellent gifts

Novel use for bows down Ken's end

Janne's reaction to the Polly Pocket vet set (the wee vet wore Crocs!)

Morgan had her first encounter with bubblewrap and was entranced. David helped her burst a sheet

And lastly, my two favourite Tink pics of the evening. Morgan playing gatekeeper to the kitchen

And Liam at the end of the evening

A Family Christmas

2009-12-24T10:41:00.002-05:00

27 years ago, my parents, my sister and I moved to Canada. Only for a year and then it became two, then four and then we somehow put down roots and had two countries we called home. And home this is, but for many years, it was especially at Christmas that we missed our other home, the Old Country, because it is at Christmas that our Danishness shows through in the different ways - some small, some bigger - we celebrate the season. And it is at Christmas especially that we miss the family we left behind, the holiday rituals where we'd all descend on somebody's house and celebrate with all of us together. It didn't matter who was hosting Christmas, it was all done more or less the same way every year - there was food (when my uncle Poul hosted, he'd get reindeer from Greenland and we'd eat Rudolph) and then there was the tree and singing and presents and the adults sitting around digesting, laughing and talking while the kids played with their presents. And there's something about that feeling of family, of people who have known you for years, people with whom you do the same thing at the same time every year that was hard to re-create for a small immigrant family in a land far away from home.

A couple of days ago, I realized that tonight, we will be nine people around the table celebrating Christmas and it was at that moment I realized how much our small immigrant family has grown. Over the years, Ken and Michele were added to our Christmas Eve and thanks to Janne and John, we now have the joy of children playing, as well. And I cannot wait to share the Danish Christmas with the kids, sharing our way of doing things with dinner first, then cleanup and then singing, sending them into a state of vibrating excitement before we start opening presents, one by one (ok, so the rest of us vibrate pretty intensely, too). They are old enough now that they can handle the delay and they are old enough now that we can sing carols first without it violating the Geneva Convention on torture. And I cannot wait to share it with David, who in a few hours will for the first time get dropped into the deep end of Danish Christmas – sink or swim, darling!

This evening is my favourite day of the year, my favourite holiday, my favourite meal - everything about this night is magical and what sends it from wonderful into the stratosphere of magic, the moment where it all comes together and your heart fills up is when we sing. Together, most of us not on key, only some of us understanding the Danish carols, but everybody giving it a try anyway, laughing until we can’t breathe at the phonetic pronunciation from the Canadian contingent, we mess up a particular song the way my father always did and bring him into the celebration with us, Janne and I add a little something to another carol that brings our Danish childhood back and we always, always end with the same song. This part of the evening is what does it for me every Christmas Eve, sends me into a place of no thinking, but pure in-the-moment joy and love, the connection between all of us so strong a feeling of family.

In Denmark, they call Christmas the feast of the hearts – perhaps festival of the hearts sounds less Aztec blood ritual – and somehow, our small immigrant family has managed to grow, with all of us descending on mor’s place to celebrate together. And in the week to come, we will celebrate again, with the people who have become extended family, meeting up like we did back home, to share a meal and the love of the season.

Glaedelig Jul! May your heart sing with the magic of small moments.

Christmas Bokeh Gone Wild

2009-12-23T09:18:00.000-05:00

Up Against That Wall Again

2009-12-21T10:45:00.000-05:00

It's no secret around these parts that I don't deal well with being reminded that I have a disability. Well, obviously I know I have one - the no walking is a huge clue - but I’ve managed to create a life where there's an acceptable ratio of the Cannot to the Can, the latter tending to be facilitated by people (attendants, specialized transportation) or technology (wheelchair, Dragon). It becomes seamless, just the way life is… normal. However, when one of those facilitators goes wonky, it very quickly becomes a matter of me coming smack up against the Cannot. With which I do not deal well.

And last weekend when my microphone died, the spiral started. First, I talked. A lot. And very fast. Turns out that the approximately 1500-2000 words I write in various places every day need to be released in some form, come hell or high water. So I did not exactly have conversations with others, rather, it more or less took the shape of extended monologues. The weekend progressed and nothing worked - the desk mic didn't work, the array mic didn't work and the Bluetooth worked brilliantly, but putting it on and taking it off caused massive pain and was therefore not an option, after all. As my shoulders screamed louder and louder with nothing to show for it, the prospect of not being able to write began to darken my world while the words tumbled through my brain, dancing, pairing up, ideas for posts, for essays, for the next line, making me positively itch with the urge to write it all down. But none of the things we tried - me and the two geekiest people I know - worked. And if the combined focus of me (who's pretty geeky) and the two geekiest people I know couldn't figure this out, then maybe… maybe it's it was impossible.

Looking back, it's clear I jumped to some conclusions that were a little premature, but when in the midst of a technological problem that appears unsolvable, with really loud pain, a deadline looming and worry over the cat coloring everything, one tends to unhinge a little easier. And unhinge I did. Because the more we worked at it and the less it cooperated, the more afraid I became of losing my ability to communicate. Losing my ability to work, losing my ability to e-mail and blog. Losing my ability to write. Which turns out to be not just what I do, but who I am and the sheer terror at the prospect insisted on quivering on the mental horizon, threatening to swoop in and take over. It wasn't pretty. In fact, my normally pretty good coping skills disintegrated completely and by Tuesday, I fell apart in a rather spectacular manner. I mean, Olympic level.

And then Wednesday, we found a mic that works. And I got my voice back. Which not only put me back together again in mere nanoseconds, but should ease the strain on the people otherwise forced to listen to me talk way more than usual (and I’m usually pretty… erm… ‘communicative’) and I can go to work again and post again and email and…

Well. It’s possible I got a little carried away. Because my shoulders are requesting a rest again.

Will I ever learn?

The Skinny on the New Comment Box

2009-12-18T10:37:00.001-05:00

As you may have noticed, my comment box no longer looks like the comment box I used to have. Earlier this week, I got a notice from Haloscan (my comment provider) that it had been bought out by Echo and that users would gradually be moved over to the new system, for which I get to pay $9.95 a year. They told me I had two weeks to make up my mind and if I didn't want to use the new system, I would be able to back up all my comments and buh-bye. In other words, if I didn't sign up, I would lose all my comments on the blog. I could keep them on my hard drive, but that's not much use, is it now?

So, no-brainer, right? Only, I switched and discovered that I hate my new comment box. I wrote the support team and got the following information:

Display of link to your webpage. When someone wants to leave a comment, they have to sign in by indicating where they're from and there are a multitude of options (Blogger, Twitter, Facebook, etc.). Only then will the link to your webpage be displayed. And only then will every other comment you have left on my blog from the last four years display where you're from. Because yes indeedy, none of my past comments display a link to their webpage, which really pisses me off, as I regularly use them for reference.

Your e-mail. No longer provided. Because apparently, all conversations will now be in public - I assume this is because we have all magically turned into 17-year-olds who have no problem telling all their 287 "friends" everything that happens in their life. Should I wish to reply to someone privately - as I planned to do with the WheelTrans employee who left a comment on my blog last week, but had to delay due to shoulder/Dragon problems and now I can't, because I don't have their e-mail - I can only do so if the person who left a comment has filled in their profile, which means I'll have to click on a link that would take me to their Twitter or Facebook (or etc.) page where I can, after 20 minutes of clicking about hunting down an e-mail address, send them an e-mail. This is presented as a benefit because now there are linkages everywhere, no such thing as a separate part of your life over here and another separate part over there, no no! Now everyone will know everything and be linked everywhere. And none of it will be happening in private.

Changing size/color of comment fields and fonts so it's actually legible. Allegedly, this can be changed. I have no idea how. It's only presented in high-level Geek.

For a while now, I've been thinking about creating a "real" website, moving away from the free platform. This may be what pushes me over the edge. Might be a while before I get that organized, though. Hope it won’t deter you from commenting.

ARGH!!!

The Year That Was: Knowledge & Community

2009-12-17T10:46:00.000-05:00

This week on MyRACentral, I prove myself to not be immune to the trend of recapping the year:

"The end of 2009? Already? Are you sure? Wasn't it just July?

But no, all the signs are there. My windows are frozen shut after the first winter storm of the season, the supermarket is playing muzak-ified carols and the Christmas tree guys are here up on the corner. And as I go by, my senses fill with the scent of pine, creating a forest of green around me as a welcome counterpoint to the concrete of downtown."

The rest of the post is here.

Reason #617 I Love Living Downtown

2009-12-16T09:46:00.000-05:00

Sitting in my livingroom with The Boy on a lazy Saturday afternoon, talking about not much, I glanced out the window and saw this:

The best part? I have no idea why.

Mojo Update & Mercury Retrograde Comes Early

2009-12-14T10:10:00.000-05:00

Thanks for all the lovely comments and thoughts for Mojo and me on Friday's post. Having this many people pulling for her seems to have obliged Her Royal Catness to do well and so far, so good. The colonoscopy was clear, the surgery went well and they were able to get the mass with 1cm margins with no apparent effect on bodily functions - a very cheerful Australian vet told me on Saturday that you only need half of your anus to be continent. Not just good news considering how much time the wee beastie spends on my bed, but also an absolutely fascinating piece of trivia, no? Mojo's staying until she doesn't need painkillers or major medical care and will hopefully be home in a few days. Pathology results later this week - continued crossing of appendages would be much appreciated.

As for the Mercury Retrograde thing... Thursday, my shoulders went ballistic, Friday, my microphone went to its reward after many years of dedicated service and the combination of the two means I can't write. At all. Fabulous. I have two other microphones and Friday evening, Ken tried to get things going. One sort of worked - not well, but well enough that I should've been able to meet my deadline (today - eek!). David tried Saturday, adding an extra mic options, same results. On Sunday, nothing worked at all and by the time I finally figured something out, my shoulders were so messed up, I need to step away from the computer for several days. Icepacks and codeine call. As for the deadline... well. Luckily, I have an understanding editor.

She Is Too Much Part of Me

2009-12-09T23:32:00.011-05:00

Mojo has a new thing. She comes up with new things all the time and I find it impossibly charming that even though she's been with me for 13 years, she still finds new things to do on a regular basis. For the longest time, she's had a ritual when I go to bed, coming up next to me and lying down while grabbing my left hand and then she lies there purring while we hold hands. When she's had enough, she'll wander off to the bottom of the bed where after her pre-sleep grooming session, she'll spread out across the foot of the bed, back legs up against my leg, tail decorously draped over my shin. Terribly adorable, except when I wake up at 6am lying diagonally because she has slowly and oh-so-sweetly pushed against my legs so she can have more room.

I'm just grateful she lets me borrow the bed every now and again.

This is still going on, but she's added a new element to the bonding session. As I lie down, she places herself by my right shoulder, purring expectantly and as the attendant who's helping me get into bed puts the comforter over me, Mojo lets me know in no uncertain terms that she wants to go under, so naturally (because I live to serve), I lift up the comforter and in she goes. She walks half across my body and lies down, back legs on one side of me, front legs on the other and as the impossibly soft and silky fur on her belly starts to warm my stomach, my hands strokes the even softer fur on her head and glide over the length of her back to her tail and she cranks up the volume and gives me her throatiest, happiest purr.

She's done this since last Wednesday evening and it makes me wonder if somehow she knows. If she's picked up on my feelings and for the first time in her life comes to me instead of keeping her distance and giving me space when I'm upset. It makes me wonder if this increase in mommy-itis comes out of her feeling, somehow knowing there's something wrong. Because last Wednesday evening, the test came back. Positive for cancer.

And that's the point where I started thinking. About how much she has been through - were she a car, she'd be a lemon - about talking to the specialist in internal medicine last year, saying I just wanted to give her a couple of good years now that we’d finally found out what was going on in her gastrointestinal area. Remembering that one of the responsibilities you accept when you take a pet into your home is not just to take good care of it, but to do the hardest thing when the hardest thing will end suffering.

And then I thought of the last 13 years with Her Royal Catness. Of spending 24 hours a day, every day with her face in my face, of catering to her whims, be they food, a cuddle or play. I thought of her sitting at me so loudly I can hear it in another room, of the ways she comes to get me when she wants a brush, making sure she has my attention then leading the way into the bedroom, tail held high, ears turned back to check that I am following, going up on the bed, waiting on the corner for me to get the brush and assume the position so she can step onto my lap, purring so deeply that my legs vibrate.

I thought of her lying on the bed behind me as I write, running towards me when I open the door as I come home, sometimes running past me into the hallway where she checks her outer territory and I spend several minutes attempting to herd her back inside again (only eventually succeeding when she’s good and ready). Of her delight in meeting new people (as long as they aren't the veterinary kind), her profound love of children, her obsession with boxes and bags, of the way she places her paw possessively on me or the armrest of my wheelchair, not allowing me to move because I am hers and of the way she lies down next to me when she's not feeling entirely well, putting her front paws on my arm in a slightly different way, this time for comfort. I thought of the years of my big flare and the recovery when my life got smaller and smaller, when the pain isolated (because illness and pain are hard on relationships) and how for a very long time, needing to take care of her was what kept me going, her face in my face, her purr every day giving me love and warmth in the hard times. Of the way she has for 13 years opened my heart every single day and how for 13 years, she’s made me laugh at least once every single day, even during the darkest of the dark times. And I thought of the way she is interwoven in my days and nights, part of everything I do because that's the kind of cat she is, as much there in my life as I am myself.

And I knew that I needed more information before I could make a decision because if I didn’t, I would spend the rest of my life wondering if it could have been fixed and so, she went to see the oncologist last Friday. The x-rays and ultrasound are clear with no metastases, the surgeon thinks he can get the mass with good margins and to me, there is no question that we do this, because all things considered, that's good news and I cannot let my wee familiar down. The money doesn't matter - it’s why god invented credit cards - because if she is not suffering, if the cancer has not spread, this is what happens when you share your life with animals, this is part of the promise you make when you take them home.

This afternoon, she'll have the surgery and a colonoscopy to make sure that there's just the one lesion/mass. Please send some good thoughts her way.

Some Snow, A Rant & I Repeat Myself

2009-12-09T10:25:00.002-05:00

I have a vague recollection of having had a wee rant about a similar event before, not just on the phone to friends or in person, but quite possibly in this space sometime last winter, but it bears repeating.

So we’ve had some snow coming and by the time you read this, it's arrived, made the morning commute a slushy mess and a few hours ago turned into rain. And also by the time you read this, we'll have spent the previous 2-3 days reading about the coming snow, watching the talking heads on CP24 talk to politicians and City staff about snow preparedness, to Canadian Tire employees regarding what you can do to make your car winter ready and extended discussion on what to include in a safety kit in the trunk of your car in case you get stuck in the masses of snow and have to spend several days in your car whilst trying not to gnaw off you arm from the hunger. The Star calls it Snowmageddon, The Weather Network has done regular Storm Watch segments since Monday morning and I started to get a tad worried, taking a look in my fridge and my cupboards and wondering what I need to stock up on to last for the duration. And then, one of aforementioned talking heads mentioned that we're going to have some rain first and then 5-10 cm of snow.

Beg pardon?

5-10? Centimetres? I'll convert for those of you who've yet to see the wisdom of metric: this is about 2-4 inches.

And sure, there was a nor'easter pummeling the Maritimes a few days ago that seemed genuinely worthy of a bit of coverage, but can we get a grip here? This is Canada, 5-10 cm is nothing, certainly not warranting two or three days of advanced Storm Watch! (insert ominous music here). Back in the days when I went to school and work outside my home, 5-10 cm might cause a bit of delay in my WheelTrans pickup, but nobody missed class or work because of it and now? Now people are being asked to stay home unless it's absolutely necessary or they have dialysis by aforementioned WheelTrans (which has apparently developed a distinctly Southern sensibility in the past decade or so) and people who don't use WheelTrans have been hypered into a frenzy of anxiety by 24 hour coverage of the oncoming storm to apparently and all storms.

Before the 24-hour news cycle, they’d have told us to leave earlier and drive safely. Now? You have to shove something into those 24 hours, because there really isn't that much news happening in the world that you can talk about it for 24 hours a day (especially when you as most North American news outlets pay scant attention to anything outside of your own continent) and therefore, what looked to be a bit of snow falling to finally make things look Christmasy, has now become – dum dum DUM! – Snowmaggedon!!! And sure, by yesterday afternoon, they were forecasting up to 15 cm (7 inches), but that still doesn't qualify as Snowmageddon. Snowmageddon is over 30 cm. Several days in a row. And maybe we would all be less anxious and much better off if we heavily medicated the media.

Me? PMS? Why do you ask??

Having Plans

2009-12-07T10:23:00.002-05:00

A couple of weeks ago, I watched a documentary called 65_RedRoses about a young woman with cystic fibrosis who was waiting for a double lung transplant. It's a nailbiter and you need Kleenex and in the end, when you see her on the Dragon boat team of people who've had transplants, paddling furiously, you are as happy as if she were a friend. It's the best argument for signing your donor card I've seen in a long time. At the end before the credits, there is some text, information telling us that Eva was living on own and planning to finish her university degree.

And what struck me about that was the plans. That instead of being static, of living through each day, of the disease being your life, now there are plans. The difference between living inward and living outward. The difference between constant struggle and laughing in the sun.

I've been frustrated lately, frustrated that I'm not where I want to be, that it's going to take me a long time to reach that next goal, that I feel I could get there if only I didn't have to work so slowly because of my pain and energy levels and after I watched that documentary, it hit me that I've forgotten something.

I've forgotten that I am exactly where I'm supposed to be, I've forgotten that having plans is the miracle, that this lightness there is to life (when my head isn't firmly stuck up my arse) is what it's about. That ultimately, it doesn't matter what I accomplish, it doesn't matter how long it takes me, what matters is the journey. What matters is that I'm working on it.

And it hit me even stronger this past week. I've had to skip a couple doses of Humira, once because the side effects were piling up and another because I had a sinus infection and by last weekend, I was "enjoying" the beginnings of a flare. It always starts in tendons and ligaments, creaking, pain, a pain deeper, stronger, so much more than the regular pain that I'm used to, that can still be pretty intense, but not like this. And it accompanies every movement, as well as no movement at all and not even a double dose of painkillers will make it go away, only mask it, while you're somehow very aware that it's just under that mask, ready to roar into attack again. And then the swelling in my feet starts and I begin to count the hours until I can go to my doctor and tell her I don't care if I'm sick, don't care about anything, justgivemethedrugnow. And on Monday she did and an hour later, I was busy doing something when I realized I hadn't noticed when the pain went away. Instead, I'd just moved seamlessly from it blaring as loud as a jackhammer outside your window to receding into the background, largely ignorable, clicking back into my life being at the front, the pain pushed back. And I cannot tell you how weird it is to realize that you got back on track without noticing the moment when you did.

My life is so full - some, including myself, might argue that it's a little too full - but in amongst the busy and the drive to do more, go further, fly higher, I lost sight of the fact that I am doing, am going, am flying. In this sense that I am now so well and have been well for long enough that I forget for days, weeks, not just one or two, but four or six that hey, take a look around - it's all rainbows and unicorns and floating on a cloud of bubbles that rise up into the sky towards the sun while I get lost in the laughing.

I forget. And it takes stronger and stronger reminders to remember the miracle, because the miracle has become my everyday. It's getting up in the morning, going to work (luckily, not far, right there in my bedroom/office) and losing track of time because I'm immersed in a task, waking up usually when my shoulder screams loud enough to penetrate the focus. And then I do my grocery shopping, feed the cat, have endless meetings because I volunteer too much, make plans for the next place to go in my career, make plans to go out – me! Going out! To things that happen in the evening and require tickets! - and spend time with my family and friends, laughing with the kids and hang out with my love.

And can we just take a moment while my world rocks with what has happened in the past year? Where instead of looking at what I don't have (yet - my god, there's a yet!), I look at what I do and marveling, boggling are not strong enough words to convey how I feel when I look at this change. Who I was then and who I am now. How my life was and how it is now. And it occurs to me that perhaps I need to not run so fast I can't see what is right in front of my face.

That perhaps I need to slow down and look and giggle with the joy.

International Day for People with Disabilities

2009-12-03T21:13:00.011-05:00

I got up before the crack of dawn to a rainy, blustery day and had built in some time before I left to allow for crying because it's just uncivilized to get up before the sun. I'm an Ahrtiste, dahlink and a night owl and it just wasn't pretty.

The day started of promising. I'd booked Dignity - a sort of taxi - as I wasn't in the mood to rattle around on WheelTrans for hours and we went straight to Variety Village where I was meeting David who'd signed up for minion duties for the day. I got off the van and the driver told me it was going to be a certain amount. I mentioned that the office had said it was $10 less when I booked the ride and he got out the run sheet to prove it and…. showed it to David. Aside from the fact that the booking sheet showed that I was right, it was a moment of rather stunning stereotypical behaviour, so appropriate on this day. I was the one who booked the ride, I was the one in the van, I was the one paying the man and yet? David's the one who needs to know what the booking sheet says. Sexism? Ableism? A double whammy?

Once inside, the day started with a welcome speech by David Onley, the Lieutenant Governor of Ontario, the first in a job with a physical disability. He spoke of going to Texas in the 1970s and seeing curb cuts and automatic door openers for the first time, realizing how difficult it was to get aroundToronto when he came back. And then he said that there are young adults who can vote now who have never known a world without the blue sign with a grey wheelchair denoting accessibility, never known a world without automatic door openers and ramps and it was one of the most thought-provoking moments of the day (if not the week). I often rant about lack of access and I am convinced that the world can do better, but it was a moment of realizing how far we have come.

Some members of the audience appeared to not like the speeches

Seeing as the event, including speeches and exhibits took place in the gym of.Village, exhibit space was improvised, but it worked and for those of you who are here because you picked up my card yesterday, welcome!

The improvise easels (thank various divinities for used book sales)

and the backstage view. My mother has always claimed that within half an hour of being somewhere, I tend to inhabit the place. I think I see her point.

It was a terrific day, I had a lot of fun, learned some things, met so many nice people and got enough compliments on my photos that - to paraphrase the Grinch - my head swelled three sizes that day.

Caption Contest Winner

Choosing a winner was hard - I've been giggling my way through the comment box for the last couple of days I can't even begin to give you a list of favourites, because they're all good. However, Willowtree’s "I still can't hear you" made me snort tea up my nose and that's as good an indication as any. E-mail me at landers5ATgmailDOTcom with your choice and address and I'll get it in the mail for you as soon as I can. Given that you're in Australia, it may not make it before Christmas, but it will definitely be on its way.

Designing Woman with RA: An Interview with Louisa Summerfield

2009-12-02T10:19:00.003-05:00

Last week, I spoke to a very interesting woman:

"Louisa Summerfield, 43, has turned what many see as adversity into an advantage. Diagnosed at age 9 with severe juvenile rheumatoid arthritis, she started using a wheelchair in her early teens. Not finding what she was looking for in comfortable, fashionable clothes, she founded WheelieChix-Chic in 2007, offering clothes and lingerie for women who use wheelchairs and for able-bodied women. Based in the UK, she has participated in Abilities Expo which took her to several cities in the U.S. as part of Chloe Magazine's Dare to Change the World Fashion Showcase. She returns with her Fall Collection in Abilities Expo's 2010 show."

You can read the rest here.

Oops... this wasn't supposed to go up until tomorrow. Blonde moment. Contest still open.

Christmas Caption Contest

2009-12-01T10:08:00.001-05:00

I just realized that there are 23 days left until The Big Day and am experiencing a slight panic attack. Assuming the rest of you are in the same boat - and if you talk about having been ready since August, I will cry - I decided it's time for a contest. Winner will receive an 8 x 10 photo of their choice from my Flickr account that they can use as a present for anyone on their list (including themselves).

The task: caption this photo of Mojo (taken this weekend where she spent a fair bit of time looking like this due to a problem in the business area of her nether regions - problem not resolved yet and so far, no diagnosis, either). Best caption wins. Contest closes Thursday at 6pm Toronto time, winner announced Friday, which should be enough time to get the print to you by Christmas.

Tink 4th Birthday

2009-11-30T10:32:00.001-05:00

Who'd have thunk that these wee babies would four years later become these lovely kids?

Sure, you expect them to grow, but never know how that growth is going to turn out. The Tinks are bright, creative, energetic, talkative (ok, that one's not so much a surprise given the rest of the family), loving kids who forever delight and challenge us all to find reserves of energy we didn't know we had and depths of love that's forever getting deeper. They are a joy. And today, they are four years old.

Last weekend, we celebrated at a local restaurant, joined by longtime friends. Before everyone arrived, John/TinkPapa relaxed with (or was pinned down by) the kids

When I asked what they wanted for their birthday. Morgan said "a red present" and Liam " a blue present". So I got them each a locomotive i the appropriate colours and may never be as brilliant in their eyes again

Photo by Janne/TinkMama

As luck would have it, the restaurant had a window ledge that was a great train area. We even had a few crashes (it was awesome!)

The food was lovely, here demonstrated by the birthday girl - small girl, big burger.

And the frosting on the cake was equally lovely, here demonstrated by the birthday boy

Andrew and Holly came with their twins Ryan and Garrett, here telling me a story in perfect (and fast) unison

Claire, Janne's oldest friend from childhood, came with her kids Nicky, Kirsten and Marilynn

Happy birthday my lovies! Wishing you a bright future with more love than you can imagine.

And now - briefly - for something completely different. Some of my photos will be part of the City of Toronto's celebration of The International Day for People with Disabilities this Thursday, December 3, 9:30am-1:30pm at Variety Village.

Random November

2009-11-27T10:09:00.002-05:00

Happy Thanksgiving to everyone in the US - I imagine you're either reclined on the divan in a tryptophan haze or madly shopping. To aid in the general mood of relaxation/as a reward for successful bargain-hunting, herewith the link-o-rama for this month.

First, something flu-related. I've noticed a rather astonishing thing It has taken a month, max two to create a massive behavioral change here in Toronto. Prior to this year, most people would cover their mouth when they sneeze or cough with their hand, but after a fairly intense public health campaign, everyone now sneezes into their elbow. Brilliant. Social change in action.

The other day, I clicked on a link in an e-mail - some mass e-mail thing from a magazine holding a contest and you can't win if you don't enter, right? The link took me to Lampe Berge, some doodad to "purify the air in your home". I was naturally interested, what with the asthma and allergies, but after clicking around madly on their site for a while, as far as I can tell, this is not an air purification system, but about "home fragrance". Huh?? Your home has to have a fragrance now? Isn't there enough fragrance in the world? As someone - and my apologies for not remembering who - said in the comments not too long ago, why, oh why must there be so much fragrance in the world? People are already bathing in perfume - alas, no little to dab will do ya anymore - and our homes must be suffused, too? Have these people ever heard of opening a window??

At a while ago, I read an article in which our local fashion diva Jeanne Beker was consulted about jeans: "Beker suggested each woman should have about 15 to 20 pairs of jeans." Beg your pardon? I don't have 15 to 20 pairs of pants, let alone jeans. Not only do I not have the closet space - or the money - but it's jeans! I can imagine at most about five variations of jeans for different occasions in which jeans are appropriate attire and…. how on earth would you keep that many clothing options straight in your head? You'd need a database, filing system, something to be cross-referenced with tops and although the organizational organizational madwoman in me is itching to get on that, I think I'll just stay in my vastly unfashionable little world. It's easier here.

Links that I have sent myself: Craig Ferguson during a rather brilliant explanation of why everything sucks, some guy pulling a bus with his hair (ouch!), Marlee Matlin having an excellent time (link added - thanks Trevor), the Burj Dubai (makes me dizzy just watch that) and why don't we see politicians laughing like this anymore? Lastly, a really cool video of a huge swarm of birds somewhere in Denmark (when it’s that many, it's not a flock, it's a swarm).

From LynnM, the pitsli and stamen (not as dirty as it sounds) and essays musing on different kinds of afterlives (I can't decide which is my favourite).

Trevor sent me a news clipping about a guy in a wheelchair who went for quite a ride, another one about an interesting reason to be arrested and one of the better accessibility problems I've seen in a long time.

DavidG’s contribution this month include an exposé of how pumpkin pies are really made, a story about spectacled bears going hairless, water reflections to feed my obsession with same and to feed another obsession, a collection of big cat related items: an adorable baby tiger that gave me a flashback, a photo reminding us of how big they really get (is that an hors d'oeuvre or a 'yes, Mistress' moment?) and a new way to watch the animals in the zoo. And my favorites this month are Life Lessons from an Ad Man, an article about it just how smart dolphins are and Snookies. That last one is worth playing over and over and over again.

Happy As A...

2009-11-25T09:25:00.000-05:00

It All Comes Down to the Bathroom

2009-11-23T10:21:00.001-05:00

Twice in the last month or so, I've been in a situation where when investigating the accessibility of a place I was going to, I was told that absolutely, it's completely accessible! Well, except for the bathrooms, that is…

Huh???

It's not new, this creative approach to accessibility, happens all the time and it makes me wonder if I'm missing something about using a wheelchair. Does that weird asexual, sort of non-person thing that's imposed upon us by the able-bodied world include not eliminating bodily waste? Does the fact that I still need to pee somehow make me a defect cripple? Am I doing this all wrong???

Every couple of years, I'm asked to do some training for new members of the Board of Directors for the agency that provides attendant care for me and a number of other people in the neighbourhood, training that illustrates what the agency does, sort of putting a human face on the theory. After talking for a while, I give them homework. For 24 hours, arrange your life as if you receive regular bookings every 4-5 hours or so of staff who come in to help you shower, get dressed, go to the bathroom, make lunch, make dinner, go to bed, etc. And it's always the bathroom thing that has the most impact. Telling someone that they can only go to the bathroom at select times during the day and therefore have to carefully monitor their fluid intake gets people's attention more effectively than any other awareness day exercise I've ever seen. This is the moment their expression changes from alert and compassionate interest to where you can see the oh, shit realization washing over their faces. You can see the paradigm shift happening in their brain, complete with an almost audible click.

In general, as much fun as it is for those of us who live the life every day to watch the able-bodied go through an awareness day simulation, I'm pretty disenchanted about them. I don't think they work, certainly not in terms of creating lasting attitude change or improvements in accessibility. Mostly, they don't seem to do much more than create pity and/or the kind of awestricken admiration that does no one any favours - "ohmiGAWD, you do this every day? Let me give you a standing ovation for getting up in the morning!!" (pardon me while I barf) - usually coupled at some level with the "thank god it isn't me" and that just serves to further cement the us/them division, doesn't it? Besides, to have any significant impact, you need to live like this for longer than a few hours or a day - get back to me when you're done this for a month, preferably without knowing when the simulation will be over. Of course, knowing that it will be over gives you an out that I don't have. Anyway! That said, one of the better exercises in living life with RA I've seen is this one - of course, had I run that thing, I would've added little lead weights to the various contraptions to add aches and fatigue for more verisimilitude. Still, it's a good one. And it would make it very difficult to go to the bathroom.

Bathrooms are the litmus test of accessibility. If I can get in the front door, travel freely everywhere within the building, but the washrooms aren't accessible, your building isn't truly usable by all. Bathrooms bring home the reality of living with a disability - whether you need assistance in transferring to the toilet, help to change a diaper or use an in-and-out catheter and you don't have that help away from your home, you don't have the ability to participate equally in society. And bathrooms are the best shortcut to give able-bodied people an idea of what this is like.

Try it. For the next 24 hours, you can only go to the bathroom at specific times, every 4-5 hours or so. And no getting up at night to pee, either.

Plotting Your Life

2009-11-20T10:15:00.001-05:00

Last night, Stephen King hit Toronto as part of the promotional tour for his latest novel Under the Dome: A Novel and in addition to no doubt doing a gazillion interviews with various forms of media, he spent some time at the Canon Theatre in conversation with David Cronenberg.

Yes, I know. Total geek fest. It was awesome. And I know it was awesome, because I was there, too (along with 2200 other fans). Shall I pause for you to turn various shades of chartreuse with the envy?

It really was a conversation, two guys who've known each other for a long time shooting the proverbial shit about movies, books, writing, the unconscious, ghosts and several rather funny Sarah Palin jokes.

About halfway in they talked about process, especially in connection to how Stephen King kept the multitude of characters straight in his mind. King started riffing on the plotting process of writing a novel, mentioning that John Irving has mentioned that he knows the last page of his book when he starts a novel - King said "what fun is that?" and went on to talk about how although he has a general idea what's going to happen, he's very much on for the ride as he's writing.

And then he mentioned plot. In connection to life. As in does your life have a plot? His point of view was that "shit just happens" (which got a big laugh - we were a pretty easy crowd) and Cronenberg interjected one of the Sarah Palin jokes, opining that her life most likely has a plot, with a predestined ending and when I was done laughing about that, the idea of life having a plot (or not) starting taking up room in my brain.

It can get quite metaphysical, can't it? Because if you believe you life as a plot, it follows that you believe there is a force larger than you - most likely divine - that has a specific plan for you. I'm not sure there is such a thing as a divine being, but have always believed that if there is, I'm pretty sure they can be bothered getting personally involved in everybody's life. For one, how would she/he/it have the time to direct all the minutia of millions of lives, so I'm pretty sure that free will is part of our genetic makeup. And if we are given free will by a supposed divine being, doesn't it follow that it is up to us to lead our life the best we can? Just as parents try to teach their kids independence, responsibility and common sense and send their kids out into the world to make their own life, so I assume the tools that we are given - by evolution or miscellaneous divinities - are free will and a brain and that we are expected to use them.

However, that was a bit of a sidetrack. I think. On the way home in the bus, I knew I wanted to write about the idea of whether your life have a plot, but I wasn't sure where it would go and apparently it's going towards a discussion of faith. But does it have to? Can a plot happen without a predetermined storyline? Couldn’t a plot develop as you live, as you make choices, as "shit happens"?

What do you think? Does your life have a theme? Is it a plot? Is your life written as if by John Irving or is it developing organically? Or is it all just random things happening?

Your Wardrobe & RA

2009-11-19T13:05:00.002-05:00

The holidays are loomin... I mean, on their way (me?m started shopping yet? A-hem...), so this week's HealthCentral post is about finding a wardrobe that works for RA:

"The holiday season is almost upon us and whether that means you'll brave the crowds on Black Friday to hunt the sales or have started percolating your own wish list of subtle hints for clueless loved ones, the scent of shopping is in the air. We look for a change in wardrobe or that special item we can't justify at a regular time (or price), but sometimes, rheumatoid arthritis can get in the way of wearing stylish shoes and putting on a tight top can make your shoulders scream."

The rest of the post is here.

Restaurant Etiquette

2009-11-18T09:54:00.001-05:00

I stumbled over this nifty post on a New York Times blog – the New York Times has blogs??? Written by Bruce Buschel who’s about to open a restaurant, it’s 100 Things Restaurant Staffers Should Never Do (split into two parts - the second post here - to prevent reader exhaustion) and….

I loved it. I’ve been known to hold forth about things that gets me off in general - no, really Lene? Having a post label entitled rant is a pretty significant clue to the - and today, we are talking about specifically things that annoy me when eating out.

#17 on the list, "[d]o not take an empty plate from one guest while others are still eating the same course." What is the point of this? To rush things along? Make the rest of the people at the table feel as if they need to eat faster? Leave the bleedin’ plate until we’re all finished and let us enjoy our meal in peace and quiet!

#68 is also a treat: "Do not reach across one guest to serve another." Drives me absolutely batty and again, I'm going to invoke the alleged perfection of the Old Country. Because where I grew up, being a waiter is a skilled profession requiring an apprenticeship and you haven't been served until you've been served by somebody who knows what they're doing instead of some student making money for tuition. Aside from that, reaching across someone else at the dinner table to get the salt or the gravy is, in my family at least, anathema. What you're supposed to do instead is politely ask if the person will pass you the salt/gravy or if you absolutely must reach across someone, you do it only after asking permission first.

#85: "Never bring a check until someone asks for it. Then give it to the person who asked for it" also had me muttering in recognition. I know that in an awful lot of restaurants, they try you to keep you moving so you won't take up valuable table space, but stop rushing me! If I wanted to eat fast, I would go to a fast food restaurant or a cafeteria. The fact that I am in a restaurant means that I would like to have a restaurant meal and that includes taking the time I need to enjoy a meal that will cost more than a hamburger. Besides, if you leave me and my companions to our conversation, who knows... we may discover we need dessert. Connected to this, #88 " Do not ask if a guest needs change. Just bring the change" also annoys the crap out of me - trust me, I know it is customary to tip and I will leave one.

And lastly, I would like to add my own "don't" to #91-94 involving music. Music in a restaurant should be low, definitely background and not make it difficult for me to hear my companion’s conversation. It should not be necessary for me to ask that you turn it down. Again, I suspect they do this to get people eating faster so they can have more customers, but I don't care. I am paying for my meal and I would very much like to have a conversation with the rest of the people at the table.

Your turn. What bugs you when eating out?