Tuesday, July 28, 2015

AWOL Blogger Reporting

Um… hi. Remember me?

I know it’s been a while since you last heard from me and I apologize. The thing is, I’m taking August off to write the next Your Life with RA book (or at least part of it) and that’s required quite a bit of work to get ready. I could go into detail, but suffice to say it’s been a lot of writing (only 4 more days…). Well, that is when Lucy doesn’t insist on the cuddle. The Boy claims he pays her in Angus roast beef to make sure. I’ve started calling her The Enforcer.

(as always, click photos to embiggen)

There has been so much writing that a) there hasn't been time for anything else is; and b) my brain is empty at the end of the day. I have several topics that I intend to blog about, but not the energy to actually do it. So instead, I’ll let you know what I’ve been doing in the past two weeks that hasn’t involved writing. Because I have taken some time off here and there.

As you may know, Toronto hosted the Pan Am Games and we are now on a two-week break until the Para Pan Am Games start on August 7. It’s been a great party, combining sports and an arts and culture festival called Panamania. Living downtown, so close to the Athletes' Village was a treat, as well. They weren’t hard to spot in the neighbourhood, always wearing their uniform with a identifying badge around the neck. The volunteers in their orange shirts were also easy to spot. 

The city was transformed and Nathan Phillips Square (in front of City Wall) became something else entirely. Three stages, with concerts every night or so, great artists celebrating Panamania, and the famous Toronto sign. It really did make you feel proud of the way the city has hosted the Games.

Living so close to one of the competition venues was also fun. Sugar Beach was transformed into an excellent sailing venue, lots of people  taking in what was happening in the harbour. I heard it was also a great experience for the competitors, who aren’t used to sailing so close to the audience and actually being able to hear the cheering. 

I did discover that I know nothing about sailing and the preliminary races were hard to understand. Once the medal events took place, we had a commentator and that made things much better. I was lucky enough to catch the metal race of the Hobie 16, which is completely crazy sailing, but I sort of want to try.

There were also a few long walks and both of them on the islands. I’ve become a little addicted to that space. During one of these walks, I re-discovered the wonder that is a cold bottle of Coca-Cola on a hot day. It’s been years since I’ve indulged in this caffeinated bubbly drink and I have no idea why I stopped. Maybe because it’s like battery acid in your stomach? Never mind, it’s tasty!

Another walk involved the Tinks invading the Islands this weekend. This happened during an interactive art festival, which was a lot of fun. The biggest hit was the hammocks — the kids were hard to get out of these wonderful contraptions. So was their mother.


Of course, the roller coaster (and other rides) in Centreville was a good draw, as well


Also this weekend, we had tickets to see Sandra Shamas, a fantastic Canadian comedian. It took place in a wonderful theatre in the Distillery District, also a Panamania site. That area at night is truly magical. And pretty cool during the day, as well.


So. That was me. What did you been doing in the past two weeks?

Tuesday, July 14, 2015

PanAm Sunset

My wonderful city has been building up to the Pan Am Games for quite some time now and they have finally arrived. I thought briefly about going to the Opening Ceremonies this past Friday, but ultimately got too cheap. I am planning to attend some of the competitions in both the Pan Am and ParaPan Am Games, though.

But what to do this past weekend? We talked back and forth for a bit and decided to go to the Islands to photograph a summer sunset. Why not Friday? Why not, indeed. Off we went to catch the ferry to Ward’s Island in the low sunlight of early evening.

Ward’s is a blissful, gorgeous place. It’s where the Islanders live and none of the houses are pre-fab or boring. On our way to find the perfect place to view the city, we came upon a flock of swallows, catching up on the day’s events.

When we got to our favourite place, the sun was low and rather blinding, so we wandered around the area. We played the game of which one of the gorgeous cottages we’d like to live in (so far, there are about a dozen), took pictures of flowers, and a few shots of the sun sparkling on the water.

I’ve never seen ducklings in real life and it’s been a goal for a few years now. When part one of this goal (swan babies!) was fulfilled at the Walk to Fight Arthritis about a month ago, I was committed to part two. And as we walked along the path on Ward’s… that’s when I saw them. Small and fuzzy and following in Mama’s wake.

I went haring off across the lawn, yelling “ducklings, my love! Ducklings!!” So focused was I on the wee fuzzy creatures that I didn’t see the dip in the lawn which caused a rather jarring moment that had my purse flying off my lap. Luckily, I remained in my wheelchair. But nevermind! I continued with half an eye on the lawn and the rest of my attention on the ducklings. My obsession dedication was rewarded thusly

I’d have been perfectly happy with going home at that point, but we would’ve missed the big show. It started with early fireworks from the CN Tower marking a particular point in the Opening Ceremonies. The day before, a practice session of these fireworks caused much of the city to think the CN Tower was on fire.

For us, the big show wasn’t the Pan Am Games Opening Ceremonies — that was held under the dome of the Rogers Centre and invisible to those of us on the other side of the bay. Our show was just as good, though, and only cost us a ferry ticket. There was just the right amount of clouds to change the sky to molten gold in one of the most beautiful displays of colour I have seen in a long time.

As the sun hid behind the clouds and sank towards the horizon, it set fire to the sky so intensely that the whole area was glowing. I caught the last of the sun just as it slipped below for the day.

This was the signal for a waiting swarm of mosquitoes to descend upon us. We were eaten alive. Which we tried to ignore, because the show wasn’t over. All evening, the sun had set out streaks through the clouds and even after having left the stage, it wasn’t done.

As the city turned on the lights, the mosquitoes turned up the heat and we decided to flee. Walking home along the shore watching the end of the light show, we both agreed that we live in a beautiful city. It’s a special treat sharing it with everyone who is here for the Pan Am Games.

Just remember to carry mosquito repellent.


Thursday, July 09, 2015

In Which I See an OT and Come up against a Stereotype

I have swan necks. Several of them.

If you have no experience with RA, you’re probably looking like one big questionmark right now. A swan neck doesn’t just belong on a beautiful bird, but is also the name of a particular deformity common in people who having had acted, untreated RA. It looks like my index finger in this photo:


As I became more involved in the RA community online, I found a lot of people wearing some beautiful rings. It wasn’t just jewelry, it turns out, but something called a ring splint. They are particularly designed to help prevent finger deformities, such as swan necks.

This has never been brought up as an option for me. I’m not necessarily blaming my rheumatologists of the last 30 years — I don’t know when these types of splints were invented, so it may be a fairly recent option.

In my last appointment with my current rheumatologist, I asked for a referral to an occupational therapist (OT) for an assessment. Partly to check whether ring splints would be an option to prevent exacerbation of my swan necks, but also to see if I could find something to help my boutonniere deformity in my thumbs, plus the joint bending the opposite way of what it’s supposed to (not sure what they call that – Wrong, maybe?). When I do a lot of camera work they hurt. Referral in hand, I made an appointment.

And this is when the part of the experience that's blog fodder enters the picture.

I arrive in time for my appointment and am told I’m seeing someone other than the person with whom I was first booked (she’s left the agency). Nevermind, I’m not particular. The new person comes to get me and turns out to be quite… erm, youthful. Certainly, he has all the requirements and licenses, but he has that shiny, newly minted look. Again, nevermind — the newly minted are often extra eager and at times better than someone who’s been doing it for a while.

We have a seat – well, he has a seat, I come with one built in — and start to chat about the reason I’m there and my RA history. I explain that I’m a writer and photographer, talk about the deformities, and mention splints. As he proceeds through the intake forms, he asks a number of questions. Among which are the following:

OT: so, do you have any other hobbies?
Me: ….

After a moment of internal debate on exactly how much I’m going to challenge his stereotype about people with disabilities, I explain that writing and photography is how I make my living.

OT: oh, so you work with your hobbies?
Me: (small sigh) Well, I think they’re mostly work if you get paid for doing it. (Silently adding “sonny”)

Nevermind the fact that I thoroughly enjoy writing and photography. My point is that if I say I am a writer and a photographer, it implies that this is my profession, rather than something I putter with in my spare time.

And I do not think I am far off the mark when I believe that the wheelchair got in the way of him hearing that. Had I presented with the exact same issues, but without a wheelchair, I am pretty damn sure that any 50-something woman who, describing herself as “a writer and photographer,” would be assumed to HAVE A JOB!

Breathe… breathe….

After we have established that splints might have helped me 30 years ago, but wouldn’t now, he told me that one of the ways I could manage the situation would be to stop when something hurt and either rest or try to find another way of doing things.

Have you seen the wreckage that is my body, SONNY? Again, that was my internal voice, I'd given up on him. But I should add that if I stopped every time something hurt, I’d never do anything at all!

He continued the assessment, measuring this and that, mostly to fill out the time. After about half an hour, we said goodbye.

And then I paid $72 for the experience.