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 this experience that 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). 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 its internal debate on it 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.



Tuesday, July 07, 2015

Why Me? Thoughts on Having a Chronic Illness

We’ve all asked the question at some point. Why me? Why did I get rheumatoid arthritis, juvenile arthritis, migraine, Crohn’s, psoriasis, etc.? It is an existential howl of despair into the darkness, asking that most fundamental of questions. Why did this happen to me?

Closely on the heels of that question follows the expanded version: what did I do? What didn’t I doesn’t it do? Is this some sort of punishment? Because as hard as that is, it’s the only thing that makes a certain sense in this new reality where nothing makes sense. 

Is it punishment?
When you are in extreme pain, when your chronic illness prevents you from doing what you need to do, when you feel like death warmed over — that has to be a punishment, doesn’t it? When something feels like torture — and the pain of many chronic illnesses often do — it has to be as a result of being guilty of something, being judged, sentenced, punished. Doesn’t it?

Only those who have done something very bad indeed are sentenced to a lifetime of misery. Is this the result of a vengeful god getting up on the wrong side of the bed or, for the less religious among us, maybe you didn’t exercise, quit smoking, eat right, or any one of the many things we are supposed to do, but so often don’t.

The domino effect is not over. Because once you start thinking that maybe this is a punishment, the self-loathing is inevitable. It may not be at the forefront of your consciousness, but it’s there. It’s so easy to say that you shouldn’t think that way, but how can you not? You did something bad for which you’re being punished with a chronic illness, ipso facto it’s your fault. You did this to yourself. So you proceed to beat yourself up for anything and everything, it becomes a habit, and you add your own punishment to the pile already dumped upon you.

It’s no wonder people with chronic illnesses have a higher rate of depression.

From the other side
But here’s an interesting question to add to the list: why not me? Which is not to say that you or I did something very bad for which we must be punished, but rather that this is the twin to the other, the why and why-not conjoined from conception. They are the yin and yang to one another, swirling together, expanding and contracting, always the two. 

Why not me? What makes me so special that I deserve to be spared this pain, this illness? With the underlying add-on of "someone else does not."

And this pokes right at that other thing I didn’t mention yet. The sense of unfairness that comes after the why. Because that’s the whole sentence, isn’t it — why did this happen to me? It’s not fair!

When I (metaphorically) stomped my foot and exclaimed that there was nothing fair about being a teenager with juvenile arthritis and in a wheelchair, my father would ask “whoever promised you life would be fair?” It never failed to bring me out of my mood, to joke back that I distinctly remembered a fairy godmother standing over my crib and doing just that. Promising me that life would be fair.

Truth be told, we all expect that to some extent, don’t we? Perhaps not consciously, but when something happens, something big and life altering, something not-good, it feels unfair. We try to be good people, try to live in such a way that we leave the world better than we found it. Does that not deserve the reward of fairness?

Except, contrary to the way we feel it should be, no one actually promised us life would be fair. Which gets back to the question of why not you?

Finding peace
After coming up on five decades of living with RA, I’ve gone through the gamut. I’ve asked all the questions and never received an answer. The why me doesn’t do me any good, but neither does the why not me. It took years, but I finally figured it out. Found the reason that this disease chose me.

Shit happens.

I apologize for the choice of word, but there really is no other way to say it. Sometimes, it just happens. Other than the science behind it, which is not comforting at all, there is no reason. It is not a punishment for your sins, or a consequence of not eating enough broccoli.

It just is.

And that is almost impossible to comprehend. So let’s not try. Let us just accept. Because in acceptance of its perfect now-ness, its purity, lies the answer. To leave the agonizing quest for a reason behind, to accept that sometimes — say it with me — shit happens, gives you the freedom to move forward.