Showing posts from May, 2010

Random May

Access is everywhere or rather, should be everywhere, but at many faith-based gatherings, people with disabilities tend to be shunted off somewhere or we're trotted out and healed for the entertainment of the masses. Except, sometimes you see something that really makes you happy . Way to show leadership. Amazing photos from a German festival celebrating Gothic romanticism, a UK broadcaster invents a new form of English , a plea for a return of yesteryear that I can heartily get behind and what the international media learned about Toronto in preparation for the G20. If you’ve ever been tempted to go to open houses to see how it people decorate their homes, here’s the website for you . You all know how I feel about That Song . And now, thanks to Brass and Ivory, I've found All the Wrinkled Ladies , which is awesome and so apropos of my May 12 post . And while we are celebrating how real women look, check out this article about the first Pink Tartan store to

Finding Peace in the Oddest Places

I was at the dentist the other day getting a small cavity fixed and as I’m reclined in the (surprisingly comfy) chair, the draining thingy hooked on the left side of my mouth, gurgling quietly while my dentist and his assistants both have various other implements - some of them making that shrill whining noise - stuck in my mouth, I realized how relaxed I was. I used to be afraid of the dentist, which happens when you were a child in the 60s and early 70s. I don’t know if it’s a Danish thing or the state of dentistry at the time in general, but I remember an attempted root canal turned into drilling out bits of a molar when I was around 12. Without anesthetic. It kind of sets you up for later anxiety. When we came to Canada in the early 80s, we all became patients at my dad’s dentist and she was wonderful. I very quickly came to enjoy going to the office – all the staff were women and there was a lot of chatting and laughing, and over the years, the pleasant atmosphere weaned me off

Precautionary Nervous Breakdowns

This week on MyRACentral, I write about scaring yourself to stay safe: "It was December 27 and I was waiting to hear if I had skin cancer." You can read the rest here .

Wall & Rope


Great Lovers

Abelard and Heloise . Antony and Cleopatra. Tristan and Iseult. Cyrano and Roxane. Victoria and Albert. Wait… am I the only one who heard that screeching brakes sound of a needle scratching on a record? Whether historical or fictional, lists of the great lovers of our world don't include Queen Victoria and Prince Albert . I certainly wouldn't have not been and I’ve been wondering about why that is. Today is Victoria Day here in Canada , so I’m going to wonder out loud. As may be glaringly obvious, I've just watched The Young Victoria , a movie about her life just prior to becoming queen and ending shortly after her marriage to Albert - a very good movie with wonderful costume and set design. Not only is it a story about the politics of the age, of the stumbles and missteps she made while trying to discover how to be Queen, it is also the story of two people meant to be together, not by Fate in a romantic sense, but by the machinations of family members who had a long

Landing Gear Down


Rules of the Game

I can’t stand bitter juries. Survivor: Heroes vs. Villains has just crowned a winner - Sandra, again, literally wearing a bit of a crown (love her!) - and it was yet another example of people voting against someone rather than voting for the best player. And I wanted to reach through the TV screen and throttle and number of them. We all expect Rupert to be sanctimonious - was there ever another player who smoked his own dope to quite this extent? - but I'd expected better from the rest of them. You can sort of understand why people who haven't played the game before occasionally get lost in the emotions, but when you have some version of All-Stars, they're generally people who know and respect the game and therefore respect being outplayed. Not this time around. It was one of the best, if not the best, season of Survivor I've seen - I have seen all of them and am not ashamed to admit it. Incredible high levels of gameplay (so many of them), incredible valleys of d

Good Causes

I watched The Blind Side last week and it made me think a great deal about the idea of doing more than just talking about what we can do to make the world a better place. Not all of us have the resources to actually take someone into our homes and make that deep a commitment to changing one individual's life, but there are other ways of making changes... There times when everything comes together and the last few weeks have seen a sort of perfect storm of good causes that need good people coming to my attention. Today, I'm sharing them, not with the intention of pressuring you to donate, but to make you aware of them and if the spirit moves you…. Yesterday, I went to a fundraiser for the Stephen Lewis Foundation in the neighborhood. The guest speaker was Marilyn McHarg, General Director of MSF Canada , who spoke about the work she'd done with MSF and about the millions and millions of children living in sub-Saharan Africa who have been orphaned by AIDS and who are no

Staying Sane

Sanity and the preservation thereof is the topic of this week's post on MyRACentral: "Waking up in pain. Going to bed in pain. Never knowing if tomorrow's going to be the day it comes back with such force that your life is shattered, sidelined again while you put everything on hold, while you find a treatment that works. Hoping you'll find a treatment that works, having waking nightmares in which you don't. No longer remembering the time Before, back when your body was your own. Fighting, always fighting, to live, to get better, to not lose function, to find hope, somehow . Living with rheumatoid arthritis is living with a relentless assault, not just on your body, but on your mind, as well. Sometimes, your biggest challenge is to not give in, to stay focused, to stay sane." You can read the rest here .

Definition in Opposition

There was another thing that struck me in the New York Times’ Patient Voices feature. What struck me was George’s story, in particular the part where he talks about practicing doing certain things over and over again in order to "appear normal". It struck another of those tender places, because what do you do when you can't? How do you get a positive sense of body image when nothing about you is normal? Last time I looked close to what constitutes normal I was probably around 11 - there were some signs of the RA, mostly in my hands, but I could pass. Since then, in the other 36 years of my life, I've been Different. And no matter what the people who love me say, women with disabilities are most definitely not considered beautiful. When I interviewed Louisa Summerfield and asked about the models on her website , she said "[s]ome people have written to me complaining that I don't have genuine disabled girls because all of them look so hot, they are shocked

May Flowers



Every year, I'm convinced it's at the end of May, which means that I've sometimes missed it. This year, it was dumb luck that I checked on the weekend and all of a sudden realized that holy crap, my blogiversary is Thursday! I had plans for it. There are going to be some neat things going on, but now I'll just have to mutter something about me maybe getting my act together by the end of the month to make some changes around here. But maybe that's a good thing, because today really isn't about the blog, as such, it's about you. Friends got me started on the blogging thing five years ago and I jumped in without really knowing what I was going to do with it, instead figuring it out as I went along. It was going to be a place where I got into the discipline of writing, but I very soon came up with that idea about emotional honesty. The blog was "born" just five months after starting Enbrel, it was the first year of the rest of my life, I had just bee

Like Me

In November of last year, the New York Times featured people with rheumatoid arthritis in their Patient Voices area. At the time, it took me a couple of days to finish it and I knew I wanted to post something about it, but obviously, it's taken me a while. It feels like time, even though I've been trying to write this post for two days without getting past the title. Or maybe especially because it's something I’ve spent a lot of energy avoiding. When I started this blog five years ago, I promised myself - out loud and in public- it was going to be a place of emotional honesty, so here we go, jumping in the deep end… The RA version of Patient Voices profiles six people and there is a very interesting juxtaposition of what happens to a child who gets RA now and one who got it 40 years ago - the contrast between Ari and Alyson says it all. And it was seeing Alyson and Jennifer, two women who both got RA when they were eight years old and who now, when in their 40s, have va

The Annual Tulip Post