Monday, November 30, 2009

Tink 4th Birthday

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

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.

Friday, November 27, 2009

Random November

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.

Monday, November 23, 2009

It All Comes Down to the Bathroom

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…


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.

Friday, November 20, 2009

Plotting Your Life

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?

Thursday, November 19, 2009

Your Wardrobe & RA

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

Wednesday, November 18, 2009

Restaurant Etiquette

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?

Monday, November 16, 2009

The Countdown Begins

It's official. The season is upon us. How do I know this? I saw Santa Claus yesterday. But first, I saw dogs - apparently, the parade was Bring Your Own Firehydrant.

And penguins entertaining the local constabulary.

Bands. Many, many bands.

Large bands and me up close and personal (my ears are still ringing). I wondered what it'd been like to walk and play for that long.

Some did it backwards and in high heels.

There were polarbears


A lobster in a gingerbread house (???)

Even the flu came

The U of T Lady Godiva Memorial Band (engineering students. Naturally)

And here he is....

Almost as exciting for a horsemad girl who never grew out of it... Mounties!

I think I need to get shopping...

Friday, November 13, 2009

Sea Change

I've been watching John Adamsand having an excellent time. It's well acted, fascinating in its depiction of the tiny social details of late 1800s America and I'm learning more about the early history of the US than I ever have before. But this post is not a review - come to think of it, this is the second post this week that starts out with filmed entertainment, yet isn't a review. A new trend?

Somewhere in the middle of the miniseries, John Adams, his wife Abigail and Thomas Jefferson are in Paris and as they watch a hot air balloon take flight for the first time, Jefferson says "so our umbilical cord with Mother Earth has been severed for the first time in history. Mankind floats upon a limitless plane of air." Which is an astonishingly beautiful way of phrasing it and it made me begin to understand, as far as a 21st-century woman can, this moment where what was thought impossible became possible.

What must it have been like to see something fly when in all of history before, nothing except birds and insects had? And the way it's filmed, the expression on the people's faces all coalesce into a sense of wonder and awe, a change so profound that you’re almost surprised there wasn't an audible crack and shuddering of the earth.

And it made me think about what achievement in the present could mirror this paradigm shift. Space flight, certainly. Walking on the moon, definitely - unless you saw them as the eventual natural extensions of flight? And I came back to computers, the Internet, thinking that this must be our sea change.

I remember when I got my first modem. It was 1989 and when I decided to get a 2400 baud modem, I was planning ahead - 1200 was the standard, but I've always bought a bit more than I need to extend the life of my technology. I used it over the phone line, dialing into a BBS where I chatted with other users. And was viewed as a hopeless nerd and loser for being one of those people who talk to others on the computer and when we had meets - actual events where we all got together - the look on "normal" people’s faces spoke volumes. The funny thing is, I met several of my dearest friends there and they're still around 20 years later. In retrospect, we weren't nerds and losers, we were pioneers (imagine insertion of raspberry here).

And then the other day, I downloaded Under the Dome, Stephen King's new book and as I watched the download of one of the five parts zip from the Internet into my computer at the rate of 36 MB in one minute, I boggled. At the concept, at the speed, at how life has changed - for better or worse - with this box on my desk. Surely this must be our limitless plane of air.

Or do you have a better suggestion?

Sunday, November 08, 2009


Another sidetrack – must be something in the water? I’d intended to write something about rumpled reporters connected to blathering on about two movies: State of Play and The Soloist and then… well. You’ll see. Suffice to say is go rent 'em. Being witness to fantastic actors – Russell Crowe and Helen Mirren in State of Play and Robert Downey Jr. and Jamie Foxx in The Soloist – play off each other is truly breathtaking.

Sidetrack #1 got me off to wonder why reporters are always portrayed as rumpled? Come to think of it, writers are often portrayed as disheveled – what is it about this stereotype about writing causing a disinterest in your appea…. And this was the moment I realized that I was writing this in a pair of yoga pants with a hole or two and a big, comfy top (the kind of comfy that means not necessarily attractive). No make-up and I hadn’t brushed my hair after it dried from the shower. A nevermind almost made it on to the page, after which I’d moved briskly onto movies, but something else happened. I.e., sidetrack #2.

But first - sidetrack #1b? - more on the no makeup. I may have mentioned before that I'm rather fair (diplomatic version of Scandinavian colourlessness), which is why for years, I went nowhere without a bit of eyeliner and mascara to avoid the "death warmed over" look. Then came a long time where it hurt too much to bother applying the war paint and once I hopped back into an upswing, I somehow never got around to picking up a mascara wand. I did buy a new one a while ago - the old one having years ago been reduced to a dried-up bristly mess - but it remains pristine and destined to become a dried-up bristly mess in my makeup bag that hasn't been opened in a really long time. Which means I don't get out a hand mirror and look closely at my face, because if I'm not putting on makeup, the bathroom mirror works perfectly fine to check general appearance, right? Combine this with the kind of limited mobility of my shoulders that mean I can't comfortably reach things on my face that are much higher than my eyes and the next thing sort of makes sense, yet….

So, the other day, I touched my left eyebrow. You wouldn't think that this would be blogworthy, but it's what happened when I touched my left eyebrow that becomes the topic today (and we shall not discuss how long it took to get there. Instead, let's consider it blog foreplay). Anyway, back to my eyebrow. Which felt sort of weird. As if the hairs weren’t lying against the skin, so I moved to the hallway mirror, leaned forward and saw this

I have no idea how this happened. Apparently, half the hair in my - rather obviously unplucked - left eyebrow (seriously, not a mile wide as the macro shot would seem to indicate) ) is now perpendicular to my face. Not decorously tamed, not civilized, more sort of standing up straight as if electrocuted and about the furthest thing from elegant that you can get. And all of a sudden, I felt like Kafka. Except less repellent. And less animal-like. So perhaps not like Kafka at all. But what I want to know is this…

When did I become an 87-year-old man???

(and no, I don't know wtf is going on with the font again)

Friday, November 06, 2009

Pain is Pain is Pain

I'd intended to write about something else altogether today, but a couple of things happened that decided a change of topic. I've been on a bit of a Stephen Fry kick - watched Stephen Fry in America earlier this year and absolutely loved it, watched the last episode of Last Chance to See this past weekend and immediately wanted to start again from the beginning the minute I'd finished the series and then moved onto Stephen Fry: The Secret Life of a Manic Depressive (that links to part one on YouTube - you can watch the entire thing there and I highly recommend you do). And yesterday, I watched a momversation entitled Overcoming Depression and really, how much more obvious does it get?

I know a number of people who are depressed. Not just sad or out of sorts because they're having a bad day, but chronically depressed, brain chemistry out of whack kind of depressed. Some of them are on medication and much better than they were, some are on medication and a little bit better than they were and some haven't gotten to the point where they're ready for that yet. And part of the reason that they're not - and part of the reason that some of the people who are taking meds wish they could get off them - is the stigma that comes with it.

Just as a number of physical conditions that are invisible, depression can't be seen. And just as I tend to rant about the suspicions surrounding the experience of pain that can't be seen or can't be tested for, so am I about to do a rant about the stereotypes surrounding mental illness. The stiff upper lip doesn't just apply to being in physical pain, but also to emotional pain - pull up your socks, get a grip, try harder. But no matter how you try, it's not possible to get better with a change of attitude. Watching that five-minute momversation is an incredible education into what depression does to a life. It shows you that even if your life is wonderful on paper, there can be a disconnect making it impossible to escape the sense of "crushing despair".
Mindy described deep depression as "intolerable pain... so unbearable and so excruciating that the only way you can think of to make it stop is to stop living."

Stephen Fry's documentary about manic depression is longer (two hours), but does the same thing. Shows you more effectively than anything else what living with bipolar disorder is like - if I were teaching psychiatry or abnormal psychology, I would make it mandatory to watch this movie. I've read about bipolar disorder, I've known people with bipolar disorder and believed I sort of knew, but I had no idea. I only knew the clinical picture, I had no idea what it was like living with it and even if you just want to learn about depression, you should watch it, too. Yes, there are segments about mania, as well, but in its exploration of the total picture of the disease, the parts about the pain of depression are so eloquent that I feel as if I finally know - as much as I can know, without experiencing chronic depression myself.

And chronic is a really good term, can bridge the gap between the invisible and visible, can draw similarities between depression and say, RA or diabetes. No one expects someone with diabetes to manage their disease without insulin. No one expects me to manage my RA without medications like Humira. Then why is there so much judgment of those who are depressed that so many people end up being miserable all their lives or killing themselves because to ask for help, to take medication is so shameful? I think we should flip it. I think we should start saying in that judge someone because they have a disease, whether physical or mental, is shameful. And maybe if we started using the language of the physical disease and started talking a lot about it, understanding would come, as well. A friend of mine and I talk of flares, of my RA and their depression and it has helped a great deal to normalize our mutual experiences within our relationship. Given us a code to describe to each other how we feel, but also given us a keyword we can use when we notice the other is having a bad time and in this way, we help to remind each other to increase our medication when we flare without judgment. It's normal, it's "just a flare", but it is just between us, because there are risks for my friend should they decide to be honest about the disease. Risks that are I do not face.

Again, the social pressure to silence your experience of pain is not doing anyone any favors. It makes people with RA not ask the doctor for painkillers and it makes people who experience the pain of depression not ask their doctor for medication to manage their pain.

And it makes me wonder all over again why our culture will not allow people to be in pain….

Thursday, November 05, 2009

Giving & Receiving Care: The Challenges

This week on MyRACentral, I ponder giving and receiving care:

What does it do to a relationship if you can't storm off in a huff after a fight with your significant other because you may need to help them go to the bathroom first? And what does it do to a relationship if you feel you can't get angry at your partner because you’ll need to pee in an hour and can’t get your pants off without help?"

The rest of that post is

Monday, November 02, 2009

A Rose by Any Other Name

A couple of days ago, I watched this Momversation about the way children address adults, which contained an astounding number women at least a decade younger than I am, if not more holding forth about how kids addressing adults by their last name (e.g. Mrs. Smith, Mr. Jones) is an essential form of manners, of showing respect and something that they insist on from the kids’ friends, going so far as to link kids calling adults by their first names to not showing adults to respect they apparently deserve merely by the fact of being adult.

And I am gobsmacked.

I was born in 1962 and as a kid growing up, my generation called adults by first names and the familiar du instead of the more formal De (like French, German and many other languages, Danish has two versions of the word you), although there was a distinction made - people my grandparents age were addressed by Mrs. and Mr. last name and formal De, not necessarily because of their age, but because they grew up at a time where this was the way you did things and we respected that. Starting in grade 1, our teachers were addressed by first name and when I went to university, so were the professors there. Coming to Canada in 1982 when I was 20, I was flabbergasted by the level of formality - it was Mrs. This and Professor Such and Such and it's been one of the hardest things to get used to in this new country of mine (is it still ‘new’ if I’ve been here longer than I lived in Denmark?).

And here's the thing... looking back on my own childhood this informality did nothing to affect the level of respect paid to adults. Adults were respected automatically and come to think of it, everyone automatically received respect, regardless of age (until they proved that they didn't deserve it). The form of address absolutely nothing to do with the level of respect given and as Heather Armstrong says in that particular momversation mentioned, it's about teaching your kids how to interact appropriately with other people, including giving and showing respect and we're right back to manners again…

Because that's what it's about, isn't it? Manners give you a code of behaviour by which you navigate the world showing consideration for other human beings. Whether it’s not wearing a hat inside or chewing with your mouth open,. being polite (to everyone), helping to clear the table after dinner, filling up the gas tank when you borrow a friend’s car, knocking on the door before you enter a room or respecting the wisdom, experience or position of your doctor, your teacher, your friend's mother (etc., etc.), I don’t believe any of those are intrinsically linked to what type of address you use.

Your thoughts?

I will be on The Biggshow on Talk 820 tomorrow, November 3, at 1:30pm talking about living with RA.