Friday, October 28, 2011

Thoughts on Cold and Stubbornness

   
It all started when The Boy said something last weekend that challenged me to not wear socks until November.

Well, to be honest, I'm not quite sure what he said, but it's possible it wasn't a direct challenge. All right, so whatever he said triggered the challenge gland in my brain which then came up with the idea of not wearing socks until November.

What? Don't you have a challenge gland in your brain?

Every fall, I go through some sort of demented competition with no one in particular and the entire world about how long I can go without turning on my heat. It’s a relatively benign way of letting my stubbornness and competitive instinct come out to play and generally less damaging than trying to beat my own record in Minesweeper or creating new ones in Angry Birds. Anyway, I usually win this game of heat because I live in an apartment building and the people who live in the apartments around me are wusses. They warm up their units, which means I have a layer of warm apartments around me and therefore don't have to touch the heat until it's -40 C with the wind chill.

Yesterday, I had to go to the UPS store to pick something up and it was a tad chilly out there. In fact, had the weather been just slightly more humid, that might've been snow. Weirdly enough, my feet were not as cold as my hands, but both extremities were still definitely registering the cold. On the way, I passed by the campsite of OccupyToronto, a clutch of about 200 tents in St. James Park. Then I started thinking of how it is only Canadians who will persevere and continue to camp outside when it is freezing and raining as hard as it is has been in the past week. It is a mark not only of their dedication to the cause, but also their innate Canadian-ness that they're staying put. I mean, instead of doing this in August or September, they are camping out in political protest at the end of October. In Canada. Thus proving that stubbornness and slight derangement is a national trait.

And it was when I passed by the tents and was sure I could see them huddling together for warmth, canvas cheek by canvas cheek, that it struck me. Since I can’t join them what with this degree of roughing it not being terribly wheelchair-friendly, I can support them in other ways. Show solidarity. Experience a tiny bit of their discomfort.

So, yes. What I might be saying is that I have in a rather astonishing leap of ridiculousness dedicated my not wearing socks to the cause. My toes are cold to support Occupy Toronto.

It seems slightly less nuts than doing it on a non-existent dare.
   

Thursday, October 27, 2011

Remission: An Interview with Dr. Yusuf Yazici

   
I had an opportunity to interview a doctor from the Langone Medical Centre and ask endless questions about remission:

"Remission. We all strive towards it, dream of it, wonder why we aren't there yet. When you have RA, the word remission is everywhere, but what exactly is it? How is it defined, how do you get there and what if you haven't yet seen any signs of it? To get more answers, I spoke to Dr. Yusuf Yazici, assistant professor rheumatology and head of Clinical Outcomes Research Unit at the NYU Langone Medical Center. Much of the discussion was framed by your questions."

You can read the interview here.
  

Tuesday, October 25, 2011

Limited

   
Limits are everywhere I go these days. It seems as if almost every post I read and every question I answer on MyRACentral has an element of someone beating their head against the wall of limits. Of no longer being able to work, no longer being able to kick a ball around with their kids, of having trouble cleaning the tub and the feelings that come with this loss of normal. And outside of work, they are there, too. Someone I know struggles with finding worth and self-esteem in a life that is shrinking around them, questioning who they are now that they can do less. And yet another flails in frustration, alternating between anger and sadness, frequently reduced to tears and all of it because of limits.

And it is there within myself, as well. I'm getting closer to the release of The Book and reading writers’ blogs about what happens after your work is published, how to promote and get it passing before eyeballs of potential readers. And there are terrific recommendations about blogging, using social media like Twitter and Facebook, about responding thoughtfully to comments, replying to e-mails from readers, creating a network with other authors and leaving thoughtful comments on their blog posts and don't forget writing the next book and as quickly as possible. And I look at it all and am exhausted at the thought because I am at my limits now, usually whizzing past them in a whirl of activity and adrenaline that keeps me burning through my store of energy for the day and well into next week before I notice that perhaps I should stop and have a rest or that ache in my shoulder will become an injury. And I wonder how someone with a disability, high levels of chronic pain and significantly lower energy than your average person can ever make themselves a success. I am within spitting distance of having a book with myname on it and I wonder if it will do what I hope, which is get out there and be of use to people and in so doing, also be a bit of use to me, helping to pay the bills. Or will it all stutter to a stop and turn to nothing? Will it even be possible to make a living as an author with a disability?

When I try to help others, I speak of managing your expectations. Mention that planning to dance the Argentine tango when you are having trouble walking is perhaps setting yourself up for failure. I speak of patience, of putting one foot in front of the other - literally or metaphorically - and persevering, keep moving, keep going and you will get there eventually. And perhaps it won’t be dancing a perfect tango, but it might be moving to music in your own way and that is good, too. I suggest that life has a way of working out, that if something isn't happening now, it will when you're ready. That in the process of becoming ready, in the journey towards that goal, you sometimes find what you didn't know you were looking for and when you think about it all, you come to believe that everything happened at the exact right time.

I do believe all of this, know that life hardly ever takes a straight path to get to where you think you wanted to go. I know that the circuitous road can help you redefine your goal, can make you realize you wanted to zig instead of zag. That wherever you end up will be because you showed up and worked hard and lo and behold, it will probably be just the thing for you. And I know the key is to dream, but not get too specific in terms of dates and times because that way lies setting yourself up for failure yet again.

I know it is about looking at what you have, not what you don't have. That the way to being happy and finding joy, even when you're not quite – or anywhere near - where you thought you were going to be is to pay attention and see what you have, truly see and appreciate it.

But every now and again, when the limits are so very close, it's hard to see the forest for the tree you just rammed into.
   

Friday, October 21, 2011

Occupy Toronto

   
The Occupy movement has come to Toronto and have settled down in St. James Park, not too far from my nec of the woods. I went by earlier this week to check out this new village

I liked the sign at the entrance. Which was surrounded by media vehicles to such a point it was difficult getting into the park


this was my first view of the tents and I hadn't expected there'd be so many


It was well-planned, there was even a medic tent


Headquarters

Creative people were making signs and let people know they could take whatever spoke to them


I like the sentiment

  
I get it. I really do. Sure, you can give in to cynicism and sneer at the hippie commune, making decisions by consensus, fighting capitalism and working towards an impossible utopia, but... the banks are making billions in profits and only give their customers 1% interest rate on their deposits, yet another luxury hotel is being built with suitess above it costing in the millions, 40-story condos are springing up everywhere you look - three are currently being built in my neighbourhood, with another one proposed and prices start at about $300K for what can best be described as a large walk-in closet. And sure, some affordable housing is being built, but not at the same rate and as far as I can tell, the gap between those who have money and those who don't have a lot of is widening and the so-called middle class is getting smaller and smaller.

So why not go out there and remind ourselves and each other that life is about more than money. That we are supposed to take care of each other. And that maybe if we did, the world would be a better place. Maybe this is not so much about fighting capitalism, but about fighting cynicism. And that can only be a good thing.


Thursday, October 20, 2011

Chronic Illness, Disability and Abuse: Staying Safe

   
MyRACentral and several other HealthCentral communities are marking Domestic Violence Awareness Month with posts about the issue and how it relates to chronic illness and disability. This is my contribution: Other posts and resources are on our   Domestic Violence Awareness Month page.

""Ow."
"Ease up a little, please."
"Not so hard."

Almost every time this attendant was scheduled, she'd used too much force when assisting me in the shower, dressing or other personal tasks. Almost every time, I'd have to ask her to be more gentle. I told management about it, but not in a formal complaint - I was afraid of reprisals from her or her coworkers. Then one day, as she was washing my hair, she pressed harder and harder and harder on the back of my neck, causing a severe injury. Finally, management made it safe for me to complain. They asked me if I'd told her to stop that day in my shower and I hadn''t. I had been incapable of speech, in shock that someone would deliberately hurt me, just breathing through the assault, waiting for it to stop. And it finally did. I never saw that particular attendant again. But every day, chronic whiplash-like symptoms serve as a reminder of what she did to me."

The rest of the post is here.
   

Tuesday, October 18, 2011

A Wonderful Evening. Or Not.

   

I've had the most delicious opportunity. I subscribe to a magazine called Canadian Living. Terrific magazine with helpful articles and really wonderful recipes and a few weeks ago, I discovered another good thing about it. Because that's when I got an e-mail with a special offer for subscribers that was out of this world. An evening with Jann Arden. Who I adore. And who gives terrific interviews – John/TinkPapa has interviewed her on his show and she’s just wonderful.

The even will be held in an intimate old church which is walking distance from where I live and sounds like it’s essentially a high-end pajama party. There'll be a chat between the magazine’s Life editor and Jann, there'll be tea and snacks (which I probably wouldn't eat because of the nut allergy), hand massages (which sounds lovely for RA hands, but I probably wouldn't do that either if the lotion was scented. The asthma, y’know. And yes, I’m aware I’m a wreck) and Jann will sing songs from her new CD. And then those attending will get sent home with a care package of chocolates, a signed copy of her new book and the new CD. Perfect girlfriend evening, right? So naturally, I called Michele and we were both very excited. Not only that was this a perfect girlfriend evening, but it was a perfect evening in the context of our friendship. So I bought tickets right away.

A couple of days later, I decided to check if the venue was accessible. Normally, I’d check such things before I’d buy tickets, but all I knew was that it was held in the Berkeley Church and in my experience, churches tend to be accessible. Even if it means retrofitting an old church, because… well, they like to be as inclusive as possible. And besides, between the event being held in a church and hosted by Canadian Living, of course it’d be accessible, right?

Nope. It isn't.

That'll teach me to make assumptions.

It did, however, give me another opportunity to be advocacious. I don't seek these things out, really I don’t. Mostly, I just try to live my life and in the process, find them. Or maybe they find me?

Now, the Berkeley Church isn't used as a church, anymore, it's been remade into an event space and y’know? That just makes it worse. Because someone transformed this beautiful building into a space to be used for weddings, parties, meetings and what have you, but assumed that no one using a wheelchair would ever want to have such an event or be a guest at one. This is what Dave Hingsburger meant when he calledsuch design "purposeful exclusion." That this might be a heritage building doesn't really matter, because as far as I know, the Ontario Human Rights Code supersedes all other legislation. And besides… I recently attended a wedding at another venerable old Torontolandmark and that had been made accessible while respecting the integrity, age and character of the building.

Accessibility is not just about physical design. It’s not just about making sure that people who use wheelchairs, scooters and other mobility aids can take part as well as their able-bodied friends can. Accessibility is also about including consideration of all your potential customers in, for instance, event planning. Because when organizations develop policies that mandate their events should only be booked in accessible locations, more locations will become accessible. And I'm not going to talk about why it's important to include people with disabilities - or even breathe a word of Dave’s phrase above - because most organizations make their events open to women and racial minorities as a matter of course, don't they?

There’s the frustration of encountering a place designed with accessibility in mind, yet not being usable because the Ontario Building Code assumes that having a disability means having just as much mobility as everyone else, except you’re sitting down. And then there's the frustration of not being included in planning at all. Of being invisible. And this is the one that moves from happening mostly in your head to hitting your heart.

It hurts. To be so irrelevant as to not even be thought of.

Right after that emotion hits you, you get angry. So you decide to use the anger in a constructive way and in a fit of advocaciousness blog about it and send a letter to the organization or place about the issue. And all the rest of it. And sure, you know that you're doing your bit to nudge people to be more inclusive in the future so that others like you won't have this experience. And it's a good thing.

But at the end of the day, I'd rather: have gone out with my best friend to spend an evening with Jann Arden.
    

Friday, October 14, 2011

How To Ruin a TV Show

  
It's been a couple of very, very busy weeks and all I can say is thank various divinities for vitamin B12 shots. Amazing conveyors of energy in a syringe! However, even with this miraculous bit of boost, I am now so toasted that I'm crispy and plan to spend the next couple of days drooling in front of the TV. Which brings me to the topic of today's post, namely what these silly networks do to shows I like, causing me to have to walk away.

Starve Your Female Characters
Castle, along with Dancing with the Stars, remains one of the reasons I now am quite fond of Mondays. However, lately they seem to be withholding food from Beckett (Stana Katic). She's always been slim, but this season she's nothing but cheekbones. Every time I see her, I want to give her a sandwich. Castle (Nathan Filion), on the other hand, seems to have "bulked up" - perhaps every pound she's lost gets moved to him? Moderation, show!

Glamourize Your Female Characters out of Proportion to Their Profession
Okay, so I get that when you're on TV, a person’s style goes up several levels, it's part of the game. However, women don't, as a rule, where those ridiculous platform stilettos to work, unless that work involves a pole (and I'm not referring to firefighters). Should they, in some weird parallel world, wear mile-high heels to work, they would likely not wear them at a crime scene (Body of Proof’s Megan)

You should also not modelize you female protagonist to excess. Vast tumbled tangles of model hair makes it harder to accept the character as say, a homicide detective (Castle’s Beckett). Wouldn’t all that hair get in the way in an altercation with a suspect?

Please also consider downgrading the Sex Kitten (Office Version) look just a tad. Women with serious, responsible and/or powerful occupations tend not to paint on their clothes before they leave home. Besides, how are you supposed to move in such things? At say, crime scenes (Body of Proof, Megan and Kate).

Expect Me to Cheer for a Sociopath
Pretending your show iss about justice, when in reality it's more like sociopathic vigilantism makes it hard to tune in. Having one of your "heroes" use a big truck to ram a car just because the car contains the "bad guy" and then heroically striding away from the scene in a way that clearly communicates we are supposed to stand up and cheer does not make me want to stand up and cheer (Person of Interest). In fact such a repeatedly cavalier attitude towards injury and possible death just makes me stop watching. It's no longer an interesting show that asks interesting questions, but merely violence porn.

Keep Actors on the Show who Can’t Act
Let me rephrase that: whose acting ability is in such sharp contrast to everyone else's that should you get into the show, enjoying a nice little break from reality, you get pulled out of it with a sharp, screeching noise every time they're on screen (Body off Proof’s Sonja Sohn and I didn’t think she could act much on The Wire: The Complete Series, either)

Change Your Female Protagonist to Mollify Those who can’t handle a Three-Dimensional and/or Complicated Woman (Body of Proof)
When the premise of your show is to follow the life of your female protagonist and you make her difficult, abrasive, at times unlikable, with difficulty in relationships, working through some pretty heavy stuff (sort of like House, except a woman and in a somewhat different situation), STAY WITH IT! Don’t change horses in midstream, taking away everything that made her unique, three-dimensional and interesting to watch. 

And while I'm at it, don’t change the show to an ensemble approach, don't force the humour (because it it is not working) and don't, please don't, have your previously crotchety female protagonist now walking around with a weird smirk whenever she's right about something to the point where the viewer suspects the script specifying "Megan walks away, a smug and satisfied smirk on her face." Please try to remember, show, that you pitched yourself primarily to women at a certain age and intelligence. When you neuter the show, your audience will leave.

In other words, and I say this to all shows out there, please use the following guidelines:
  • Assume your audience has a brain
  • If your male boss feels threatened by your protagonist, you’re on to something. Millions of smart, grown-up women will watch.
  • Cut the cast that don’t contribute to the story
  • Make your anti-hero somewhat likeable and/or your villains more despicable
  • Feed your female cast. Let me repeat that: FEED YOUR FEMALE CAST!
  • Have good hair, not model hair
  • Throw out the stripper heels for any character who is not an exotic dancer
  • Just in case you missed it: assume your audience has a brain
     

Wednesday, October 12, 2011

World Arthritis Day: Awareness, Building Bridges & an Exciting Announcement


 Today is World Arthritis Day and this is what I wrote for MyRACentral to celebrate:

""Arthritis? I have that, too. My knee acts up when the weather changes."
"Arthritis? But that's for old people!"
"Rheumatoid arthritis? It's such a tragedy you won't be able to pursue your dreams."

We face misconceptions about rheumatoid arthritis every day. Very few people know what it is, confusing it with osteoarthritis, often shrugging off the effects. When someone does know a little about rheumatoid arthritis, it’s usually accompanied by a soundtrack of doom, expecting you to spend the rest of your life being tragic with a capital T.

These misconceptions have an impact beyond the daily frustration of having to educate someone yet again. The misunderstandings about RA carry a stigma that affects how we live our lives. Some have to hide their diagnosis from fear of losing their career and with good reason - many people with RA face discrimination at workkind it. Marriages are lost, families refuse to understand and when your ability to go out is as unpredictable as the moods of a 14-year-old girl, friends stop calling.

Building Bridges to a Better Understanding of RA
Today, October 12, 2011 is World Arthritis Day. Today, people around the globe will work to improve the understanding of arthritis in their communities. The thought of that much positive effort sent out into the universe can give you goosebumps!"
   
You can read the rest of the post on MyRACentral. The very next paragraph has the exciting announcement. And it's not just exciting because my entire long weekend went into it. It's really, REALLY exciting.
  

Tuesday, October 11, 2011

How Lucky Are You?

   
Sometime in the last month or so, I read some suggestions for writing exercises somewhere and this one struck me. Or maybe it was from Katie Couric’s book, I forget. Point is less about where I found it than the question itself:

How lucky are you?

Nifty question, innit? Since yesterday wasThanksgiving here in the not-so-frozen north it’s a natural one to post about.

I think I'm very lucky. I look around at my life and feel grateful for all that’s in it. I'm lucky that I have a wonderful family and am friends, genuine friends, with my mother and my sister. I am lucky that my family includes a number of chosen family members, such as John, Ken and Michele and her kids. I’m lucky that I get to be moster/aunt to two beautiful kids named Liam and Morgan. I’m lucky that I’ve found the love of my life and lucky that he’s head over heels with me, too. And the cat’s a pretty lucky find, too - her sweet goofiness makes me laugh every day.

I'm lucky where I live because Toronto has great summers and this year was amazing. I'm lucky that my neighbourhood is accessible pretty much everywhere, that even in the middle of downtown, it still has a unique character as a neighbourhood, one that's a bit like a small town. It values green spaces and blending income levels so some buildings are condos and some are affordable housing. I'm lucky that my neighbourhood is tolerant, not caring what colour, ability level or sexual orientation you are. I'm lucky that my province had enough sense to not vote in Hudak’s Conservatives and lucky that the people of Toronto have discovered their voice and are putting a leash on our mayor.

I'm lucky that I live in a place that has universal healthcare, funding sources to help pay for really, really expensive drugs and a government that funds attendant care through taxes. Without any of these, I would not be able to have my life. I am lucky that I have RA…

Yes I know. This lovely little post just came to a screeching halt for you, didn't it? But I am. Because without my RA I wouldn't be who I am, where I am, what I am or know the people that I do.

I am also lucky that someone invented Humira, without which I would probably feel a lot less lucky about having RA.

And I'm lucky that somebody invented the blog, because without it I would not have a job I love or know all the really cool people I do. I'm lucky that it every day, someone will leave comment on my blog even though they know they probably won't hear back from me and that's another way this blog community makes me feel lucky. Because I have friends who understand that I care about them even though I can't keep up an energetic – or much of any - correspondence.

And I'm lucky that the sun is shining, there's food in my fridge and my biggest problem today is that I have too much to do.

How lucky are you?
   

Friday, October 07, 2011

The Best Advice You Ever Got

   
I'm reading The Best Advice I Ever Got: Lessons from Extraordinary Lives by Katie Couric. She asked a plethora of well-known people from entertainment, industry, philanthropy, sports, politics and everything in between to tell her what was the best advice they ever got. It's a terrific compilation of nudges, comfort and encouragement. It's good if you're not sure where you're going, have a choice to make, feel disconnected from your dreams or need some motivation in the middle of a hard slog. Get the regular book version, though. The narration is terrible. Entirely too many people e-nun-ci-a-ting as if they're speaking to the dimwitted.

Anyway, I decided to do my own little version of it. I'll go first.

My parents always told me to do my best and celebrated my results. When I got a D (as tended to happen in anything math-related - all those years of hospital school weren't really conducive to understanding that field), they asked me if I'd done my best. By then, this philosophy been so much part of my upbringing both in terms of them teaching it to me and me seeing them do their best every day, too, so the answer was usually yes. And then we celebrated as if I had gotten an A.

All these years later, I changed the name of that philosophy a bit to "buy the ticket," but it's made from the same cloth. Do your best and celebrate the effort.

What's the best advice you ever got?
   

Sunday, October 02, 2011

An Open Letter to Dr. Phil

   
Dear Dr. Phil,


Late last week, there was a bit of a kerfuffle on Twitter about a statement on your website. In the summary of the show Saving Alex, youare quoted as stating that as a consequence of being obese, Alex may develop "medical complications … including rheumatoid arthritis, hypertension and heart attack."

Rheumatoid arthritis is not a medical complication of being obese. Osteoarthritis, on the other hand - the "wear and tear" arthritis - can be. RA is a chronic autoimmune disease in which the immune system attacks itself, causing a chronic inflammation in synovial tissue and erosion of the cartilage that cushions the surfaces of joints. We don't know what causes the immune response that triggers rheumatoid arthritis, although there are some indications that smoking, periodontal disease and a certain type of bacteria in the gut may be involved. It affects 1% of the population, women three times more often than men. In the last 12 years, the Biologic medications have made a huge difference in the treatment of RA and it is now possible for some to achieve remission. There still is no cure for this illness.

I have RA. I have had RA since I was four years old and started using a power wheelchair at 16. In 2005, one of those Biologics saved my life. I still use a wheelchair and still have high levels pain every day, but I have a life and a job and I laugh every day. I am also passionate about making life better for others who live with RA and advocate for awareness whenever I get a chance.

I'm pretty sure that you don't personally update your website, but because it is your site, the quote is attributed to you. This makes me wonder if someone made a mistake when updating your website. Regardless of the source of the quote, you/they are not alone in mixing up osteoarthritis with rheumatoid arthritis. In fact, the #1 frustration of those of us who live with RA is that most people believe that the bit of osteoarthritis they have in their pinky or knee is the same as RA.

Dr. Phil, I am not going to engage in an impassioned and snarky diatribe about the quote and what it may (or may not) say about you. That gets us nowhere. Instead, I will ask that you join us in creating awareness about RA. You are in a position to inform. You have a very popular show that reaches a lot of people and can be a terrific partner in helping us advocate for a better understanding of what RA is and how it affects people's lives. This is the type of understanding that can lead to more funds being raised for research. Research that can lead to many more amazing advances in the treatment of RA and one day lead to a cure.

Would you consider doing a show on rheumatoid arthritis? It may not lend itself to the usual format of your show, but every now and again, shaking things up in the name of doing good can be worth it. Perhaps invite Christine Schwab, author of Take Me Home from the Oscars or Karen Ager, who wrote Enemy Within. I'll happily volunteer to join you in a discussion of RA. Kelly Young is also a terrific RA advocate, as is RA Guy.  The point is that there are many knowledgeable health activists out there who can help you in educating your audience about RA.

October 12 is World Arthritis Day. Please join us in making 2011 the year that rheumatoid arthritis became better understood.

And for those of you reading who are not Dr. Phil, please help spread the word by sharing this link. Maybe if we all ask, he'll respond.

Update, October 12, 2011: Just in time for World Arthritis, some exciting news on this issue has happened!