Monday, March 28, 2011

Hype

   
I’d planned to do my own Best Movie Oscar nominees post, but the effort was hampered by… well, life. However, in the last week or so I've had the opportunity to watch both The King's Speech and Black Swan and other than both being Best Movie nominees and both the actors playing the main characters nabbing an award, they also have another thing in common,.-.... Hype. Okay, so another word for it is word-of-mouth, buzz, excitement, but at a certain point just before the Oscars when things go arguably a tad crazy, hype sort of covers it.

I was very much looking forward to watching both of these two movies in particular, but discovered that one lived up to hype and the other one didn't. There was nothing I didn’t like about The King's Speech - the acting was phenomenal, the script incredible, the direction wonderful and I want to own this movie so I can watch it on a regular basis. And not just because I have a long-term crush on Mr. Darcy Colin Firth. Everything in this movie about a quiet man being forced to do something he doesn't want but feels duty bound to do touches your heart and your mind. It's about something real and is a surprisingly intimate film. Black Swan, on the other hand, not so much. On the one hand, I enjoyed watching the depiction of the daily grind of a ballet company and learning just a little about the kind of dedication it takes to be a dancer. On the other hand, the story itself is just a little too melodramatic - okay, a lot too melodramatic. There are too many salacious aspects, such as a drug use, the lesbian fantasies, the slimy leader of the company, the crazy aging ballerina and the demented stage mother to end all stage mothers and I think it takes away from the story of the main character. I might have  believed her story more if it hadn't been surrounded by such operatic melodrama. And it means I don't think it qualifies as a possible Best Movie. I think part of the problem is expanding the field of Best Movie nominees to 10 instead of five. Although it can be difficult to choose just five for best movies, canisters ridiculous. I mean, including an animated kids’ movie as Best Moving? I don't care how good it is, there is no way it is on par with something like The King's Speech.

In terms of the Best Actor and Best Actress wins, they also differ. Colin Firth is his usual, wonderful self, disappearing into the role, changing the way he carries himself, walks and does a wonderful job of capturing the way Bertie speaks. Natalie Portman, on the other hand… Well, I'm confused. She spends most of the movie looking tense and frightened and it wears on you after a while. The last half hour is amazing, but if I have to wait an hour and a half to get pulled into a story, to be moved to the point of not wanting to look away, you don't really deserve the nominee for Best Movie. I've seen Natalie Portman do better and I saw Natalie Portman do much better in the last 30 minutes of the movie, but I have a sneaking suspicion that she won the Oscar for throwing herself into the role of a ballerina the way she did, complete with weight loss, intense year-long training, etc. In terms of the dancing and physicality of the character, she did do a terrific job, but the tense and frightened just got ridiculous. Was the problem that the role was written this way? Was it that the hour and a half before we got to the really interesting part was too long, would it have worked better if they'd shaved off 10-15 minutes? Either way, I did not believe that the leader of a ballet company would choose this person to be the lead in Swan Lake and if I don't believe that, then nothing else works.

I could also write a post about how there was really no surprises in terms of who would win Best Actor and Best Actress because the actors portraying the characters with disabilities always wins. You have the guy with a speech impediment, the crazy girl and if we expand the field to television, as well, the autistic girl (Claire Danes for Temple Grandin - very well deserved). However, I'll leave that one for now.

It's rare that a movie or performance lives up to the hype and I think Natalie Portman's performance suffered from it. Had I not been expecting much more, I may not have been so picky about the tense and frightened, because the last half-hour definitely qualified her as excellent. On the other hand, everything that had been hyped about The King's Speech lived up to my expectations. And that was a treat.
   

Friday, March 25, 2011

The Future's So Bright: a Good Time to Have RA

   
I've mentione dthe November RA forum here before, but now there are details about what I learned on MyRACentral:
   
"I am in a large room in a downtown Toronto hotel, chairs lined up facing the front and around me are over 300 other people, most of whom are here for the same reason I am. A quick glance at hands confirm membership in the RA club - there are more swan necks than down at the waterfront! I am amongst my peeps."

You can read the rest here.
    

Wednesday, March 23, 2011

The Path to Sugar Beach

   
Settle in folks, this one's a bit long….

We have a large amount of waterfront here in Toronto, nestled as we are along the shores of Lake Ontario. For a very long time, there's been talk of revitalizing the waterfront and not too long ago, the three levels of government (municipal, provincial and federal) got together and threw money at it. This means that all kinds of really interesting multiuse projects are being planned and built along the waterfront.

Christopher Hume who writes about urban issues and architecture for The Toronto Star has been writing enthusiastically about it in a way that has helped to generate a lot of excitement and there's a video on the Star’s website where he interviews the developer and a landscape architect about the vision of Sugar Beach, one of the projects in the revitalization project. The vision includes that projects should "make people feel welcome." This philosophy is also emphasized on the waterfront website which includes quotes such as "the public is an integral, valued part of the planning and design process," "ensure that the entire waterfront is accessible to the public" and "creating vital and inclusive waterfront neighbourhoods."

Why am I writing about this? The new Sugar Beach mentioned in the video is an urban beach located in my neck of the woods. It opened last August, but since I was in a world of pain at the time, I haven't had a chance to see it yet. Last week, spring sprung a bit (as opposed to today where it's -11C and snowing) and I grabbed my camera to go check out the beach and take pictures of the water. Today's post is a tour of the path to Sugar Beach. How accessible is it?
  
We’ll start at the north corner of Front and Jarvis Sts (map of the route is here) and move south on Jarvis. Curb cuts are wide and almost level to the street, making them easy for wheelchairs to navigate not just for power chairs, but for those who use manual chairs, as well. The sidewalk is wide and fairly level, making for pretty much as comfortable ride as one can get (click pics to embiggen).
   
  
Down by Jarvis and The Esplanade, the curb cuts are also comfortable, especially on the east side of the street. On the southwest corner, irregular asphalt created by the beginnings of a pothole make the route a bit difficult, but most people use the east side anyway. The sidewalk is still fairly comfortable, although the scaffolding around Crombie Park narrows the path, but it's doable.
   
      
On the way, I can't help but notice the big step from the sidewalk to the path along the storefronts and the gray-on-gray tone. That's a major tripping hazard for people coming out of the stores that I wonder why the edge of the step has not been painted yellow to warn people who are visually impaired, as well as the able-bodied public that there is a change in level.
  
         
Moving down the sidewalk under the bridge, we come to the first curb cut along Lakeshore Boulevard. There are four to navigate to fully cross this major artery and they're not as comfortable or as new as the Jarvis/front and Jarvis/the Esplanade intersections. My power chair can do it, but someone in a manual chair might have trouble. And then we come to the fourth in the series (bottom right photo) on the south-east and south-west side of lower Jarvis, where we come upon brand-new curb cuts. I expect much of brand-new curb cuts - my experience is that they, as the ones at Front Street, tend to be almost completely level with the street with a low grade from street to sidewalk, making it easy and comfortable to get from the street to sidewalk when you're in a wheelchair. Not so much here. The cut in the curb has a significant bump to get onto the street and this grade of the cut itself is quite steep. Going down from sidewalk to street is especially nerve-racking, even in my power chair and I don't want to think about what it would be like if you're in a manual chair - I'm not sure it would be possible to get up to the sidewalk without tipping back on the rear wheels. This is something that many people with disabilities cannot do, but it's yet another example of how accessibility standards seem to assume that people who use wheelchairs are just like an able-bodied people, but sitting down. Oh, and I'd also like to thank the dog owner who let their pooch have a poop right in the middle of the curb cut.
    
   
As I move down the East sidewalk of Lower Jarvis, I notice a rather alarming state of disrepair between sidewalk and the area next to it and wonder how many people have tripped off the sidewalk into that. It also makes me nervous thinking about what would happen if one of my wheels should accidentally go out to the edge of the sidewalk.  
   
          
Nevermind, I'm almost there, can see parts of Sugar Beach and am getting excited. I haven't been close to the lake since last summer and you know how I feel about water. I get to the northeast corner and am not too thrilled with the curb cut, so cross the street – both sides onlu marginally qualifying as curb cuts - and discover an even worse curb cut, one that I dare not try.

Nevermind again, I plan to retrace my steps (east side curb cut not being very conducive to get up on the sidewalk), go back to the light by Lakeshore Boulevard, cross the street and go down the East sidewalk. Before I get going, I look across to the sidewalk on the other side of Queens Quay Boulevard and blink. Then I look again, dumbfounded, look to the left to where the light at the crossing from the East sidewalk leads and blink some more.

East
       
  
West

   
And then I decide to investigate a little further, crossing the street to the East, and get up on the sidewalk (neither of these curb cuts are very comfortable or accessible) and go down the sidewalk a little until I'm opposite the path into Sugar Beach.
   
  
Surely this can't be it? This new and wonderful area has this as an entrance? No paved area, no concern for grade - that entrance used to be to a parking lot, is not made for chairs and you have to risk life and limb traveling along a busy road to get to it - and the dirt/gravel between the sidewalk and Sugar Beach itself is not easily traveled by wheels.

As I stood there, on the north sidewalk of Queen’s Quay Boulevard, I could feel the sting of tears in my eyes. This beach is part of the waterfront revitalization, it's a brand-new development, one that has received rave reviews and it did not occur to me that something so wonderful and so new would not include considerations of accessibility for people with disabilities. Let me rephrase that: Sugar Beach itself may be accessible to members of the public who have disabilities - obviously, I couldn't get there to assess it or, as I'd intended, enjoy it. However, if the path to Sugar Beach is not, we are not welcome. And for that to happen, for that level of purposeful exclusion to occur in this day and age was a shock so profound I felt as if I'd been slapped. Some may say that it's a goof, a mistake, an oversight, but we're back to $1.5 billion of seed money to the revitalization from three levels of government, years worth of consultation and planning and brilliant design resulting in a project that has no wheelchair access. It is inexcusable.

I will be writing a letter to Mr. Hume, inviting him to check out this particular part of the waterfront revitalization from the seated point of view. Should this result in better access, I'll take you on a trip to Sugar Beach at a later date.
    

Monday, March 21, 2011

Sisters

  
A little over 38 years ago, my parents sat me down and told me I'd be getting a present in early Spring. I guessed a bike, but it was a sister instead. And she's still the best present I've ever received.
  

  
   

   
Happy birthday, Janne!
   

Thursday, March 17, 2011

10 Years

   
Today it has been 10 years of life without my father and it is hard for all of us to understand it's been this long. I remember that St. Patrick's Day in 2001 with crystal clarity. Remember the call from the nursing home that said if I wanted to be there, I should come quick, remember hurrying through downtown streets surrounded by Saturday shoppers and fluffy flakes of snow, chanting pleasewaitpleasewaitpleasewait. Remember getting there and remember us holding my father, talking him over, telling him it was all right to go, remember feeling so honoured, so moved that he let us share the moment of his death. Remember understanding why it is called a passing, seeing that it is a journey and an active one from this life into something else.

Every year in March, in the weeks leading up to the date, our days are edged in sadness, in missing him more. And every year, we have a cry and then we spend some time talking about our life with him, celebrating who he was and always end up laughing, with tears and without, because my dad was a very funny man who loved having a good time. And that makes us smile about him choosing St. Patrick's Day to go, because he would be forever commemorated by a big, continent-wide party.

A few days ago, I got a card from Janne. She had gone through old photo albums, found pictures of dad and us in laughing times and sent copies and it was so beautiful a gift. Because there he was, laughing, clowning, dancing. Seeing him in these pictures made the crying easier and the laughing, too. And in the best of ways, we celebrate my father's life again.
  
   




   
   

Monday, March 14, 2011

Kodo

   
For months now, we've had tickets to see the Kodo drummers on March 11 (there's a fantastic video on their site and a wee doc here). There were seven of us, some had seen them before (it was to be my third time) and Michele’s boys would experience the magic for the first time.
  
 
   
And then Friday morning happened. The massive earthquake, a devastating tsunami and we wondered if the performance would still be a go. No one would blame them if the disaster in their homeland would make the drummers focus elsewhere, but it wasn't cancelled. We stood - well, some of us did - before it started, in silent acknowledgment and love for everyone affected and then the beat began.  
  
    
Somehow, it was more profound. It was as if they drummed their all, sent every emotion of despair, of loss, of worry, sadness and hope into every single beat, lifting themselves and us into another world. It was like being the drum, the beat no longer a result of human pounding on skin, but an elemental and primal sound that bore witness, gathering up all everything they and we could give and sending it all the way from Toronto to Japan.
   
   
Kodo. Heartbeat. For them.

 

Friday, March 11, 2011

Me & My Shadow

  
I don't remember a time when I didn't have Juvenile Rheumatoid Arthritis. Well, now they call it Juvenile Idiopathic Arthritis, but a rose by any other name is still a pain in the arse.

I have lived with RA for over four decades and there are times when I've thought about how even really bad criminals tend to get off for good behavior after spending that long in prison, but apparently, I’m a lifer. And most days, it isn't really prison. It's just life and thanks to the Biologics, I'm living it, enjoying every moment of every day.

When you’ve had RA - or any chronic illness, I guess - for decades, it becomes part of your life. It intertwines, growing in and around you, becoming you and you it. It is as much part of you as your shadow, is a different kind of shadow, one that at times demands entirely too many resources but without which I would not be me. Where does it stop and I begin?

A couple of days ago, I read an article about a 14-month-old girl who had just received cochlear implants and who could now hear for the first time in her life (that link will take you to a revised version of the first article, which appears to no longer be on the site). Not surprisingly, initially the loud noises made her cry, but she is little and adapted quickly. It made me wonder what would happen if someone came along and gave me…. Well, it’d be more complicated, I guess. Aside from waving a magic wand to take away the RA (and the fibro too, please), regeneration would be necessary to reverse damage. Or would they just take away the RA and leave the damage? In which case, I guess I have had a miracle, but moving back to the mythical day of my equivalent reversing of my disability…

I thought about it yesterday on my way out to get my wheelchair fixed and quickly, one after the other, a list of wishes developed. I’d find myself a horse and take up riding again, tramp about the Don Valley with my camera, go visit the Tinks and tell my sister and brother-in-law to get lost for a week and then there's that road trip I've always wanted to take, the one where I drive south through the States, wherever my whims take me for as long as I want, turn right somewhere around Louisiana and meander my way across until I hit the Pacific Ocean. But after engaging in some wishful thinking for a while, a deeper question slowly emerged.

Would I still be me?

I have said before that if I were offered to do it all over again, I don't think I would choose a life without RA. It has shaped who I am and I like who I am. I love my life, the people who have become part of my world along the way and although I'm sure I would find happiness in this other parallel reality, I like this life more or less just the way it is, possessed wheelchair and all.

Let's assume that I wasn't starting over, but somehow magically healed (a body transplant?), So I'd still be this person who has been shaped through my experiences, still have the life I have now with the same people in it, but would I be able to adapt? I'd have to learn to use my body in a completely different way, would interact with the world in a way that would be completely alien to me. I'm pretty sure I could get over not being in pain - my recent experience with ultrasound indicates that it would take some getting used to, but in the long run, it wouldn’t be a hardship to be free from pain. But who would I be if I didn't have pain anymore? Who would I become? I alternate between jumping all over it because it would give me a chance to write as much as I want without having to stop after an hour or so, I' d have range again, walking much further than I can now… Wait. I wouldn't be using wheelchair, would I? I would be actually walking, instead of the concept of walking. What would that be like? I have a couple of times seen the world from someone else's height and it’s dizzying. Everything looks different and I'm pretty sure I’d be disoriented for a very long time.

And we're back to the nitty-gritty of it, but I'm not sure you can separate it into a larger concept instead of the nitty-gritty. Because my RA, my disability have been part of me so long that they are part of everything, the big and the small. They are most definitely part of what I am, but are they part of who I am, as well?

Would I still be me without them? I have no idea.
   

Thursday, March 10, 2011

The Cost of Pain: Shedding Life, Shedding Love

   
This week on MyRACentral, I muse about the cost of pain - financial, sure, but primarily social:

"If you live with chronic pain, you are not alone. Pain affects more than 76 million people in the US, more than cancer, diabetes and heart disease combined. It is estimated that conditions involving chronic pain cost the US economy more than $100 billion a year in healthcare expenses, lost income and lost productivity. And that's just the money part of the equation."

The rest of the post is here.
  
 

Monday, March 07, 2011

Abigail Adams

   
I never had an answer to the question that gets sent around in e-mail every now and again. You know the one - "if you could choose any person from history to talk to for an hour, who would it be?" Everybody wants to talk to Buddha , Jesus or JFK and I've no idea what I would ask any of those people. However, after reading Woody Holton's biography of her, I want to meet Abigail Adams. And not just for an hour, either.

Abigail Adams by Woody Holton is a book that tells the story of Abigail, her family and friends and the beginnings of the United States. It does so in a remarkable way, telling the story through quotes from the letters written by Abigail, as well as the correspondence she received from others. These quotes are strung together by the connecting thread of Holton interspersing explanations about the era's social mores, politics, literature, religions, etc., and it all comes together in a meticulous and beautiful painting of a life.

Because so much of the book is composed by excerpts from letters, the voices of the people quoted come clearly through to the reader and it felt as if I was having a visit in the past. I've always wanted to be able to travel back in time to see what it was like to live in different eras and Holton gave me that gift. He's a terrific writer, bringing the subject to life in a way that can only be done by someone who has been obsessed about it for years and it's to our benefit. I found a lecture about Abigail Adams by Holton on YouTube - haven't had a chance to check it out yet, but if it's half as good as the book, it's time well spent.

The book starts and ends with discussions of Abigail's will, one in which she distributed her own property and monies to female members of her family. This was unheard of at the time, as married women were under coverture, meaning that when a woman married, her legal rights were subsumed by husband. In other words, her property became his property. That Abigail's will was followed was therefore an indication of her husband, John Adams, allowing it to be so. The beginning of the books starts with the question of what happened in Abigail's life that allowed her to amass personal property, as well as the question of what happened in her and John's marriage that led to him treating her will as a legal document.

Abigail was a prolific letter writer - she and John exchanged over 1200 letters - and she wrote about personal matters, as well as politics and finance. In the beginning of the book, there are many references to Abigail's famous "remember the ladies" letter of 1776 in which she encourages the husband to remember the plight of women when he was involved in writing the U.S. Constitution. However, even after that letter, Abigail continued to be aware of women's issues and in many ways continue to encourage her acquaintances and friends to include women as partners in dialogue. Abigail is also shown to be passionate about politics and possessing a rather brilliant head for money and business - much of the family's financial comfort can be attributed to Abigail's astute investments.

The letters between Abigail and John show a marriage based in a lifelong deep love and mutual admiration. They seem to be people who would have a very lively relationship, one punctuated by intense debate, partnership and passion. A while back, I read an article in the New York Times Magazine that referred to Abigail Adams is being "querulous" and I still wonder at that. Abigail is clearly a woman of strong opinions and she's not afraid to share them, sometimes having a tendency to lecture. In many of her letters to John, she did complain about his extended absences, but to be honest, if I was separated from my love and my partner for weeks, months and even years at a time, I think I might have opinions about that, too. The letters from her later years at times get a bit crotchety, but I think it's allowed of older women (personally, I'm saving up for my old age).

Holton also gave me the gift of knowing much more about 18th-century America then I did before. The book covers everything from the philosophy of sensibility and how it affected personal relationships to the ins and outs of investing during the war for independence. I learned that back then, people often wrote drafts of their letters, that children, especially boys, were shuffled around to family and friends for education and sometimes shipped halfway across the world on their own, being put in the care of a slightly older slave or an acquaintance of their parents. And I could go on - this is one of those books that you want to talk about endlessly

Which is why I'm glad I came upon the book club idea. What did you speak of Abigail Adams, both the book and the person?
   

Friday, March 04, 2011

Whimper

   
My inbox’s making me nervous. As is My List. And all the things that aren't on the immediate List, but on the Weekly List, not to mention the Monthly List and the second inbox. I don't know what compelled me to have two e-mail addresses, but they're both making me nervous and the idea of retiring to a cabin in the woods with no electricity is starting to seem really appealing.

Of course, then I remember that I use a power wheelchair and the shine goes off that idea.

By Tuesday afternoon, it had already been a long week and things have not improved. There have been several lengthy and intense meetings, all of which required follow-up with various communications and writings. Catching up with the work I didn't have time to do was also a priority and then there were a number of last-minute additions that I still haven't even touched.

The plan was to get the book club post on Abigail Adams written for today, but last night got consumed by unscheduled research. The new revised plan is to talk about Abigail next week.

I'm also trying to remember to be grateful for Humira which enables me to be so well that I can whine about being too busy. I've put it on my list for right after I collapse and take the weekend off. This latter activity will happen this afternoon at approximately 3:37 PM, after which I will pretend to be in a cabin in the woods with no electricity. A couple of days with pretend birdsong, the soothing sounds of a pretend stream gurgling meltwater, pretend smell of wood and unpolluted air and a very real good book for company should do the trick.

May your weekend be restful.
  

Tuesday, March 01, 2011

Brave New World

 
I was four when I had the first symptoms of Juvenile Rheumatoid Arthritis (JRA). I was also four years old when I was admitted to hospital and placed in isolation for three weeks with a suspicion of rheumatic fever. I don't remember much about that hospital stay, except being alone in a bed with white bars in the middle of a very white room with fluorescent lighting. Even the door was white and had a window in it.

I was nine when I was finally diagnosed. When I was 11, I spent three months in a rehab hospital. That was where I learned that crying doesn't change anything. It was also where I learned to suck up being stuck with needles - every Thursday after rounds, I and other kids with JRA would line up outside an office and one after the other go into have our swollen joints tapped. This involved sticking a needle into the joint - without the benefits of local anesthetic - and drawing out the fluid. The nurse was usually too busy flirting with the doctor to hold our hand. I got sent home on gold injections and they help for a while, but I soon developed side effects and had to stop taking the medication. There were no other options for treatment.

I was 12 when my JRA went systemic and almost killed me. My fever was so high for so long that I had hallucinations. I remember going to the daily x-ray of my chest to check on the progress of the pneumonia and what they told me was a growing heart and barely being able to sit up unassisted for the seconds it took to take the x-ray. After the worst crisis was over, I remember sitting in a wheelchair with a blanket over my knees in the hospital’s garden. It was spring and I remember thousands of blossoms on the apple trees. I also remember learning to walk again and how two steps on the pretend staircase in the physiotherapy room seemed insurmountable.

I was 13 when the JRA spreads all my joints and they put me in a full body cast to try to treat what was happening in my hips. Instead of helping, they fused and I spent years lying in a hospital bed waiting for custom-made hip replacements made in England. I was 16 when I had both hips replaced, got a power wheelchair and went home.

More than once, I have had doctors tell me that a child getting RA today would have a completely different experience. So would adults - the chances of ending up in a wheelchair are now very low. The treatment options have grown by leaps and bounds, especially in the last 10 years and now it is rare to see gnarled hands with fingers bent in impossible angles.

15 years ago or so, I attended a forum with a speech given by Dr. Edward Keystone. I remember him talking about the approach to treatment at the time being akin to carpet bombing the immune system. And I remember him saying that researchers were trying to develop the equivalent of a targeted missile. Last November, I went to another forum with a speech given by Dr. Edward Keystone and it had the best title: The Most Exciting Time EVER in the History of Treatment of Rheumatoid Arthritis (webcast here). In it, he talked about all the different targeted missiles that are now on the market, about the ones currently in development and about how the research goal now is to develop treatment that can turn off RA before it happens.

I never thought this kind of miracle would happen in my lifetime. That it has is due to the committed doctors and researchers who work to find such treatments and it is due to the money raised in part by The Arthritis Society. My life is possible not just because your taxes are being used to fund life-giving and life changing medication, but because a lot of someones decided to donate to The Arthritis Society. The fact that children who get JRA today will not have to go through what I did is because of donations to The Arthritis Society. And that is why I have decided to put a button on my sidebar that leads to their donation page. Because every little bit helps and maybe there's someone out there who would feel it's the right place to send their money.

March is Juvenile Arthritis Awareness Month in Canada. And I will spend it celebrating miracles.