Tuesday, August 31, 2010

Another Kind of Random August


I've been sitting here, staring at an empty Word document for quite a while now, having a hard time coming up with something. Truth be told, I'm having a hard time coming up with anything. I have another Word document filled with links and notes for the August Random post, but my shoulders won't permit it - yes, you read that right, instead of my right shoulder not behaving, it's now both shoulders who are acting out. Joined by both elbows. In other words, my ability to be at the computer has gone from limited to minimal.

Now, I could write about the pain again, but to be honest, I am bored by it. Well, that's not honest. The reality is that I've had just about enough. I forget how long it's been really bad, but I think it's somewhere in the neighborhood of three months and I may have run out of coping mechanisms. And when all I want to do is alternate between stomping the floor while screeching it's not fair and curl up in a ball, whimpering, it's next to impossible for anything else to get around those two impulses in my brain and come to the forefront enough that I can write about it. And doing the links in the Random August post would kill me completely, so instead, this will be the minimalist version, with a few treats from that post and a thank you.

First, the thank you. Which goes out to Andrew and Sara who both awarded me the One Lovely Blog Award in this past month, something that warmed during a very frustrating time.



And when I bounce back from this latest trip into hell, I'll pass it on.

Finally, someone did a study showing that marijuana helps pain. Not that the throngs of people who use it for that purpose didn't already know this, but having an actual study helps. It might make it easier to get a doctor to sign the application for medical marijuana and reduce the stigma.

Janet told me about the Bechdel for Women in Movies and since she did, I haven't been able to not use it when watching a movie.

In the bundle of things forwarded to me by Trevor, there were two that I especially wanted to share and since I can't decide between them, you get both. Peanut butter proves the theory of evolution wrong and an utterly charming interspecies moment between otters and a girl.

I ran up against the same conundrum with David's links, so here’s voice recognition in Scotland and the best short story ever.


Monday, August 30, 2010

Winner/Weekend with Lucy/Buskerfest

First, the winner of the Annual Shamelessness Contest. Although they claim there were 20 comments, in reality, there was 15 - oh, how I loathe this commenting system. I asked David to pick a number between 1 and 15 and the winner is comment #12. Congratulations, Julia! Check out my Flickr page and contact me at landers5ATgmailDOTcom when you've made you choice.

For Lucy, the weekend started great. I got a present involving tissue paper in the wrapping and Lucy discovered her new love.



Then things deteriorated when Janet and David cut her nails



She told Grandma all about it and got a cuddle



And naturally went to bed for a snooze after the trauma



Okay. So. Buskerfest. if you've been around for a while, you know how I feel about this particular festival and if you're new, check out last year's post. Essentially, it's four days of not being able to move in my neighborhood and there's something about it that makes you feel the disability rather intensely. Maybe it's a wall of butts.


However, I was at a neighbourhood associations meeting about a month ago and someone from Buskerfest was there to tell us about it and something rather exciting happened. Last year, they had a lot of complaints about the lack of accessibility and they had worked hard to put an Access Plan into place. To do this, they had consulted with Pride Toronto which until now was the only one of the numerous summer festivals in Toronto to have an Access Plan. Now there are two, Pride and Buskerfest.


It meant including lots more ramps, volunteers roaming the crowds to spot people using mobility devices who might need help getting to the front lines of the ring of people surrounding performers so they could see what was going on, as well as a designated area where you could go ask for help. So we went to test it out.


There was the regular fair stuff. Like facepainting - amazing facepainting



I found magic wands for the Tinks and we had a lot of fun with them. Here's Janet modeling how happy they make you



David's about to grow wings



If you got thirsty - and you would, the weather was fantastic - the City supplied our excellent tap water



And once you'd processed that, there was a designated area for getting rid of it again



We just missed Saurus and I really would've liked to see them



but did run into a living Toronto landmark: The Silver Elvis



And there was funnel cake. A.k.a. crack with strawberries. Haven't had it in almost 20 years and it was better than I remembered



And what about the access? Well, we did see the designated area the second day we went (for more funnel cake) and were quickly spotted by the volunteer who came running up, asking if she could help



Although, once the performance started, I'm not sure how effective the area was



Mostly, it was the usual and now in two storeys!



And Hank's still doesn't want my business



At the end, we all agreed that Buskerfest was terrific - except for the buskers, that is - and the funnel cake has given me a reason to look forward to next year's event. It's a step up.

Friday, August 27, 2010

Annual Shamelessness/Contest


This week has kicked my arse. There was a lot of work, there was forgetting of moving slowly and subsequent consequences, there were various disability related expenses hemorrhaging, much delay of certain administrative things that really shouldn't be delayed, Buskerfest has started and although I'm sure I could get a good rant going on minimal provocation, I choose to not. Because I'm taking a long weekend starting now and am therefore in a spectacularly good mood. Or will be soon.


One of the reasons I'm taking a long weekend is that it's my birthday tomorrow and much to my delight, due to my uncle arriving next week from Germany and the family birthday shenanigans being delayed another week, I will not have merely a birth day, but a birthday fortnight. I love extended celebrations.


To kick things off, I'm having a contest to spread the good mood. The winner will receive an 8x10 print of their choice from my Flickr page. Contest closes Sunday evening at 6pm EST. To enter, leave a comment telling me what made you smile today.


Enjoy your weekend!



Thursday, August 26, 2010

Hard Conversations: When RA Affects Your Work

The shoulder has ripples and I talk about work, at work...

"'Can you work at all?'

I was in the middle of my two weeks off to heal, hadn't shown any signs of healing yet and was talking to a friend about how I felt, sharing my worries about what it meant for afterwards. For when I went back to work. And that's when she asked that question and in so doing, was the first to mention the elephant in the room. Because this injury was big, it wasn't getting better and it felt as if just looking at my computer made the pain worse. And if I, who make my living writing, couldn't be at my computer, well..."

You can read the rest here.



Monday, August 23, 2010

Endurance

In 1914, Sir Ernest Shackleton and his crew of 28 set off on the Imperial Trans-Antarctic Expedition on the ship Endurance, intending to cross the continent of Antarctica via the pole. They reached the Weddell Sea and their ship became encased in pack ice and over the duration of the Antarctic winter, slowly crushed. At one point in this process, Shackleton and his crew abandoned ship, got as many supplies as they could (including their diaries) and set up camp on a thick ice floe. And that’s just the start of the story, because you can’t stay put on a floe in the Weddle Sea, can you? You have to somehow get home and if you’re an expedition leader, you have to get everyone you signed up to go with you not just home, but preferably as unscathed as possible. But how do you go from a floe near the south pole to the whaling station at South Georgia, the nearest human habitation and do so when surrounded by pack ice, an unruly ocean and really unpredictable weather?


I had an awareness of this exhibition, but didn’t really know much about it. Last week, as I was rummaging through my audio books, trying to figure out what I wanted to read next, I came upon Endurance: Shackleton's Incredible Voyage by Alfred Lansing, narrated by Simon Prebble. At the time, it was somewhere in the 40s with the humidex (about 104F) and it seemed a good antidote. I was poking about on Amazon and accidentally saw a description of how everything turned out and I’m about post spoilers, so if you are vague on the details and want to be surprised, stop reading this review now, go get the book - I can highly recommend the audio version – and I’ll see you on Wednesday.


Are you sure?


And I’m so glad I accidentally read that spoiler and found out that everything turns out well, because if I hadn’t, I’d have bitten my nails to the quick and stayed up at night worrying about everyone.


The book is written based on the crew’s diaries and logs, which sounds as if it might be a bit repetitious and dry, but nothing could be further from the truth. It reads like a thrilling piece of fiction, Lansing managing to tell the story interspersed with quotes from the different diaries in a completely natural way that just flows from one moment to the next. You hear about life on the ship and the ice floe, stuck in the middle of the Antarctic winter for eight months, what the weather was like, what they ate, how they entertained themselves and Lansing makes it come alive. The details are incredible and it made me miss the tradition of writing a diary and wonder how future writers and historians will re-create our times - from blogs? It can’t possibly be the same. Anyway, back on track… The detail also brought a couple moments of wondering who put together the list of supplies for the expedition, as they included a woman’s red party dress (used for dress-up in a Christmas variety show) and a bicycle. Who brings a bicycle on an Antarctic expedition??


If this book was a piece of fiction, I would have rolled my eyes and tossed it across the room. Never have I read a piece of writing in which the characters over and over again are put in horrendously perilous situations and just as things calm down and they relax, danger arrives again. If it was fiction, you’d laugh at it, but it’s not - it really happened this way. And because of the detailed diaries and Lansing’s talent at pulling it all together into an incredibly readable story, you begin to realize why this era was called the heroic age of Antarctic exploration, because bravery or insanity is the only explanation I can come up with for going on a trip like this. What these men went through made chills go up my spine and I sat in awestruck, jaw-dropping admiration at how they kept going and kept going and kept going for 17 months of what I would call absolute horror. And somehow stayed civilized. When the book ended, I wanted very much to know what happens afterwards to these people I had come to know and care about – would they go home and spend the rest of their lives sitting by the fire, surrounded by food or would they go back? And thanks to Wikipedia, I know that many of them went back. Brave or nuts? Hard to tell.


As usual, Simon Prebble does a wonderful job narrating this book, effortlessly bringing individual character and voice to the different members of the crew and performing this piece of writing brilliantly. He brings the story to life, enhancing the tension, the desperation and blends his talent with the talent of the author in such a way that they pull you into the story, not letting go until the very end.


This one’s a keeper and I know I’ll be reading it again. Go get it. But be prepared to lose sleep when you can’t put it down.



Friday, August 20, 2010

Tinks with Bubbles


The Tinks came this past weekend and Mormor (Danish for grandma) had bought bubble paraphenalia. And we all had a glorious time.

John got us started with a couple of beautiful ones


The Janne had to outdo us all


I got into it, too

Photo by Janne/TinkMama

But let's not kid ourselves. The most important people there were the kids.


Liam blowing and trying to catch at the same time


Morgan admiring her work


When you're 4, nothing can make you quite as happy as bubbles


And jumping for bubbles


And then a storm pulled up and we went back inside. It was a wonderful day




And to start your weekend on a good note... That offensive postcard on George Smitherman's site I mentioned on Wednesday? Has been removed. Read more on Dave's blog. Thanks to everyone who joined the protest
. We made change happen. I am overwhelmed.

p.s. That double "I hate you" in the title? My apologies. Problems with Blogger, problems with Dragon that apparently turned on by itself, obediently dictated my swearing at the computer and I didn't notice. Because I'd been attempting to edit the post, not the title. Sigh. Thanks to Lissa for saving me from myself.



Wednesday, August 18, 2010

Leadership

What makes a leader?


There’s passion and determination and the ability to inspire similar passion in others. A belief in doing what's right and the willingness to do that, even though it isn't popular - the recent healthcare debate in the US is one example. I saw another example somewhere within the past week about same-sex marriage and how a certain percentage of Americans is against it. And then, in the very next sentence, the piece I was reading mentioned that at the time interracial marriages were made legal in the US, over 70% of the population was against it. So yeah, leaders do not lead by what the polls say, but by doing what is right. Even if it makes them unpopular at times.


Another thing a leader should do is to be thoughtful, in word and deed and this is where I start to get to today's point.


In the next municipal election in Toronto, we will be electing a new mayor and the race is already getting weird. Partly because of the characters involved, or more specifically, one particular character named Rob Ford. He has a reputation for shooting from the hip, speaking before he thinks and I'm pretty sure he carefully nurtures this image of being a scrapper. As many such people, he's prone to saying things that other politicians wouldn't dream of and one of his latest brilliant moves is to include a quote regarding signage around open bodies of water. To wit "[y]ou’d have to be retarded if you can’t see frickin’ water in front of you".


Subtle, he ain't. Wise, he also ain’t. Offensive, he most certainly is. On a couple of levels, one being the level of idiocy with regard to public safety, but it's the other one that leaves me breathless. You all know how I feel about that word and its current prolific status in our culture. Everybody uses it, not just teenagers and it makes me wince, every single time. Dave Hingsburger works for a community agency called Vita Community Living Services, serving people with intellectual disabilities. This brilliant agency has launched a campaign called Words Hit and they distribute information about just that word (more information here). Because that word hits and anything remotely similar applied to any other minority group would be considered hate speech. Yet, outside the disability community, it isn't. To such a point that one of our mayoral candidate thinks nothing of proudly including it in his campaign material.


And so, Dave asked for our help. To blog about it and that, I gladly do, because I think it is appalling that someone who considers themselves a serious candidate for public office would use this word. And Dave also asks that we e-mail, both Mr. Ford and another of the candidates, George Smitherman, who is using that quote as part of his campaign material, but because of the stupidity of it, not because it defames people with disabilities. And one more, to e-mail our local TV news station that didn't cover this from a disability perspective.


And seldom have I felt more invisible, because in this one, all of us who have disabilities, regardless of which kind it is, are together. I can't help but wonder what would've happened if Mr. Ford had used the N-word. Bet it would have been all over the news.


Leaders lead by example and if our leaders think nothing of tossing out derogatory terms for various minority groups, I don't want to think about the kind of government or city they'll be building.


Therefore, I'm asking you to help us by writing the candidates expressing your feelings about this (contact information available over at Dave’s blog). Even if you don't live in Toronto or Canada and feel strongly about this, please write. This reflects on our reputation and the more outrage that is poured their way, the better.


It’s too bad we have to pressure them to become the leaders we deserve.



Monday, August 16, 2010

Bridging the Distance

It is both a memory and a defining moment, overlapping and coexisting and still, a decade and a half later, it is as clear in my mind as the day it happened.


I was working for a municipal government, part of the team that implemented Ontario’s dearly departed Employment Equity Act. This was a brilliant and pioneering piece of legislation that mandated workplaces be reflective of their communities, more specifically, that a number of target groups - women, aboriginals, racial minorities and people with disabilities - be represented in the workforce. And contrary to the arguments of the status quo, right-wing or not, this did not mean hiring the unqualified. What it did mean was to remove barriers to employment that had absolutely nothing to do with essential duties of the job. Not surprisingly, what with me being an example of one of the target groups, part of the duties of my job was to work on the implementation of the barrier-free policy, improving accessibility not just to employees, but given that it was a municipal government, the public as well.


And so, on a brilliant fall day, there I was at the head of the room facing somewhere between 40 and 50 engineers and architects, all men, all but a tiny handful white and all very much not happy to be there. Because I was there to tell them about how they were supposed to change the way they did things and if you've ever talked to an engineer or an architect, you know they tend to be fairly confident in their own superiority. Being told to change and told by a wisp of a girl in a wheelchair...? As I looked out over the sea of men, faces closed, leaning back in their chairs with their arms crossed, I felt a little like shark bait.


I took a deep breath and jumped into the deep end. Went through the law (and it's possible my voice shook a little), then covered our policy, made sure I interspersed the dry stuff with the occasional comic on the overhead, talked about the changes to physical structures involved in universal design and then the discussion started. Or, more accurately, the barrage, the hostility and had they been a pack of dogs, I would've said they put all four paws in the ground and refused to move.


And then I mentioned strollers. As in how universal design makes it easier for everyone, not just people using mobility aids and there was the briefest of silences, which somehow paused the world and then an almost audible *click*. And someone piped up and mentioned how much of a pain it’d been having to navigate stairs when his kids were small enough to need a stroller and another one nodded, recounting a story of a door smacking into his elbow as he was trying to wrangle a stroller, shopping bags and a door. And then, blessedly, another one mentioned the time he broke his ankle skiing and how difficult it had been to open a door while using crutches and how an automatic door button would have been really helpful. And very shortly after that, my presence became irrelevant as the group fired into an excited discussion about designing for universal access and how much it could improve the use of that building or this. And they were no longer leaning back, faces closed, arms crossed, instead they were leaning forward, faces animated, hands waving or drawing. I had completely lost control of the room and it didn't matter, because the click had happened. There was no longer an able-bodied versus disabled, an us versus them, two groups so different that they had nothing at all in common for the space between had been bridged. Now, there was only human beings, living in and using the same space.


And it was a defining moment in two ways. First, because that moment of the click, where time stopped and stretched and started up again, a bridge appearing, was when I knew this was how I had to spend my life. I’d always wanted to change the world when I grew up and that room full of engineers and architects allowed me to discover that you don’t have to put the dream away, be "realistic". That you can indeed make the world a better place and for that, I will forever be grateful to that group of men, because they helped create a bridge.


Second, it is this moment I think of whenever the argument is made that we do not need legislation with teeth, that changes will happen without them being mandated by law. That people will be nice enough on their own to make it possible to hire people with disabilities, to make it possible for those of us who travel through our days in a different way than the norm to participate equally, to be fully integrated in our communities. Because the reality of what happened since the repeal of the Employment Equity Act has shown that without teeth, nothing happens.


It is why legislation is so important, because it drives moments like this, moments that bridge the distance, create a whole instead of segregated parts.



Friday, August 13, 2010

What If

It's been hard to ignore, but I've done my best, mentally erasing the implications of the two marks just below my left knee, the tiny ends of the suture waving back at me with a decidedly insouciant air. They're right there, couldn't be more in the my field of vision if they tried and every time my eyes skipped over them, there was a nanosecond of what if and then I moved on to ignoring the handiwork on my leg.


But it's been building, all the what ifs piling one on top of the other and although each was tiny, a couple of weeks of this has created a bubble within, each filled with a tiny moment of dread and it's built and it's built and sometime around Tuesday evening, I couldn't contain it any more. I called David late at night and asked him to remind me that there isn't a perverse power in the universe whose job and mission it is to create chaos in my life, because believing that would be kind of nutty, wouldn't it? Still, the fact that this blog has a label called Cat Toy of the Universe should tell you something of my opinion on the matter, because in addition to the more ridiculous moments of my life, there is that whole autoimmune disease at the age of four for which I haven't yet quite forgiven the divine.


And there I was, the bubble of dread bursting and it all spilled out in a torrent of fear and I finally said the words. Said that I wasn't afraid of dying, I was afraid of losing my life.


My mind knows that 99% of people with melanoma live and live well and nevermind the woman I once knew who fell into the 1%. Those are pretty good odds, but the question would be if the moles were malignant, would I have to stop Humira?


Even just thinking it makes me nauseous.


Because Humira is a TNF blocker and TNF means Tumor Necrosis Factor, described by Wikipedia as a regulator of immune cells and "[d]ysregulation of TNF production has been implicated in … cancer" and it sort of stands to reason that if you have the C-word, it's not a good idea to block the tumor necrosis factor, right?


Absolutely terrified does not begin to describe it.


Before the Biologics, before TNF blockers came into my life and saved it, RA was taking my life, eroding who I was, taking another bit and then another every day and if I can no longer take this medication, it's there. The RA. Looming above me, poised to swoop down and start the feast all over again, waiting to consume my life, bite by bite. And I have just only recently decided to accept the possibility that I can plan long-term, can settle in and enjoy without dreading that it'll be taken away again, any day now.


I have energy to spend with my family and friends, I have a job that I love, I'm watching my sister's kids grow up, I'm writing a book, am madly in love, have adopted a new feline and all of these show a commitment to years, to decades. All of these are symbols of a life I have built and it's just begging for the other shoe to drop, innit?


Last time, I knew, just knew, that the moles removed were benign. This time, I didn't. I didn't know that they were not, either, but I had no sense one way or another. And I could logically think back on what the dermatologist said, what the surgeon said, but the bubble filled with small, quick moments of dread still built and no amount of trying not to worry until there is something to worry about would stop it from expanding. And it wasn't until I said the words, until I said I am not afraid of dying, I am afraid of losing my life that I could breathe again, because now it was out there. I was still afraid, but saying it out loud burst the thing, sopped up enough of the little what ifs, of the fear of possible loss, that I could suspend the worrying.


Fear articulated loses power and so, I slept the night before last. Still, arriving at the clinic yesterday was an exercise in not bullying the receptionist into getting me in before my turn.


They’re non-cancerous.


And whereas I believe it's healthy to be reminded of how damn lucky you are, may I respectfully request that the next such reminder isn't quite this nervewracking...



p.s. K - you left a comment on yesterday's post about your friend who has RA. I've lost my list of people and their blogs (damn comment system and yes, we're still working on it) - send me an email, please? I have some thoughts on your friend's situation.




Thursday, August 12, 2010

Preparing for Your First Appointment with a Rheumatologist

This week on MyRACentral, I get practical:

"There you are, on the sidewalk outside your doctor's office, a referral to rheumatologist in your hand, your doctor saying I think you may have rheumatoid arthritis ringing in your ears and somehow, the world is tilting a little. Nevermind possibly facing the rest of your life with a chronic illness, right now, you're worried about the appointment with the rheumatologist. What can you expect? What can you do to prepare?"


The rest of teh post is here.



Wednesday, August 11, 2010

Favourites

I spent a significant part of the summer in the company of one of my very favourite books, one that I've now read about seven times or so. Every time, it is just as good as the last time I disappeared into this world between its covers (or megabytes, if you're looking at the audio version). And this weekend, I spent some time in the world created by one of my very favourite movies. Which naturally made me think about that infamous desert island and what reading/viewing material I’d bring with me. We'll ignore that the island might be a bit short on the electricity required to charge my iPod and run my DVD player, call it an irrelevant detail.


Been done before? Absolutely, but not by meone I haven't posted about before and my shoulder’s acting up, so I don't have the energy or brainpower for something more exciting. Besides, I can't wait to see your responses so I can add new books and movies to my list of things to experience.


First, visual entertainment. I decided to update this particular category now that miniseries and TV series are available, as well. For this purpose, a miniseries counts as one item on the list, as does a TV series. Cheating? Not necessarily. This game is been around for a while and it's about time it adapts to the new reality. I’ve arbitrarily chosen 10. For ease of packing.


1. Big Eden.- it always makes me happy

2. Pride and Prejudice (BBC) - I can watch this over and over again and still find new things to delight me

3. Bridget Jones’ Diary - ditto

4. The Ghost and the Darkness - don't know what it is about this one, but it's fascinating and thrilling every time I watch it

5. The Hunt for Red October - ditto

6. Buffy the Vampire Slayer – well, duh

7. The Wire - fantastic writing, each season the visual equivalent of a novel

8. Holiday - 1938, Cary Grant, Katharine Hepburn, figuring out how to live life

9. Casablanca - timeless

10. Bones - fun, moving, just the right amount of gross


And books


1. Guy Gavriel Kay, The FionavarTapestry - I'll be posting more about this one soon

2. Susanne Clarke, Johnathan Strange and Mr. Norrell - a different take on the Napoleonic wars, adding magic in a thoroughly magical way

3. Elizabeth Kostova, The Historian - to learn and to have shoes scare the crap out of me

4. One of Jennifer Cruisie’s books – for lightness, humor and romance, nobody beats Cruisie. Probably either Fast Women or Faking It

5. Stephen King, On Writing - as this always inspires me to write, I’d need my computer on the island, too

6. Anne Rice, The Vampire Lestat - I used to read this about once a year for inspiration in how to live fearlessly

7. Elizabeth Peters, the Amelia Peabody series (hey, if I can expand the movie category, it goes for books, too)

8. Jane Austen, Pride and Prejudice – well, duh

9. Mary Roach’s books - technically not a series, but her take on spies, death, sex and space are not to be missed

10. Kathy Reichs - how can you spend time on a desert island without Temperance Brennan?


What are your choices? One or ten or anything in between.


And just before I go... Laurie and her team No Pink for Profit are in the CIBC Run for the Cure. Pop on over and take a look and if the spirit moves you, please consider sponsoring her.



Thursday, August 05, 2010

Of Two Minds

It all started on Tuesday when I went to the Market to do some shopping. As I was making my way out again, a busload of tourists was disembarking and several of them seem to find it difficult to remember what their mothers had told them about staring at the unfortunate. Apparently where they came from, there's no such thing as free range wheelchair users. So naturally, I tweeted it when I got home.


And while I am on the topic of Twitter, let me take a moment to confirm what we all expected would happen given my slightly obsessive tendencies. I’m addicted. Last week, I twice wanted to tweet in public. Felt vaguely dirty. May need an intervention before I buy a smart phone and start tweeting every minute of the day.


Anyway! So I tweeted the experience and Lisa tweeted back asking me the following question: "how do you feel abt ads which use wheelchair image as the scary outcome to get pts to change disease-mod drugs?". And probably also not surprisingly, I was incapable of answering that in 140 characters, but it did give me the topic for today's post. And as the title indicates, I'm of two minds.


On the one hand, I am sick unto death of being held out as the worst case scenario. This one's all tied up in the stigma of disability, in us being defined as Other, the ones that people can look at - or stare at - and be grateful that they are not one of us. We are the worst that can happen, we are the freaks, we are the nightmare and quite frankly, it's a bit of a barrier to normal social interaction if one of the parties is busy being completely freaked out about the other. It is why people still insist on using the loathsome terms confined to a wheelchair and wheelchair-bound, neither of which are true. It liberates me – without it, I’d be confined to bed. The chair does not bind me, it frees me, enables me to live my life.


I've spoken to several people whose doctors recommended a wheelchair or scooter and tried to help them through the instinctive flailing, reflexive putting all four paws in the ground calming yelling nonononono. Because starting to use a wheelchair is giving up, letting go of hope, giving in, stopping the fight. But I see it as a tool, one that saves you energy, one that frees you to move beyond the immediate neighborhood because now you are no longer restrained by how far (or un-far) you can walk. Instead of using the energy to walk, you will now have energy left over to do other things that you didn't before because you were too tired and in too much pain. And I have seen people get their chair, go outside and rarely be home again after that because they were too busy living.


And on the other hand, I am in a very big sense the worst case scenario. Twice, I have that doctors tell me that if I got RA today, I wouldn't end up in a wheelchair and it's thanks to advances in disease modifying drugs, thanks to the Biologics that these days, the vast majority of people who get RA will not need a wheelchair. And I’m happy about that, because that should be the goal. The goal should be to prevent the damage to joints that will require modifications in the way you move around. Because of course, if I'd had the option, I wouldn't choose the seated life. I would choose more ability, the freedom that comes with walking - or, more specifically, the freedom that comes with your disease being managed so well that you never get to the point where walking is so difficult that it significantly impact your life.


However, the seated life was chosen for me and from this perspective, it really isn't the worst case scenario.



Tuesday, August 03, 2010

Ponderings upon Mole Removal

Last week, I spent some time in an outpatient clinic, waiting to have two moles removed. I’d been there before, in fact, it’s the remaining two moles of the triangle on my leg that now need coming off. Largely for preventative purposes, I think - the dermatologist was moving very quickly when he spoke to me, but I think it comes down to them being too dark in colour to be left alone lest they turn completely to the dark, go rogue and create problems. So there I am, in the clinic, waiting. And waiting. And since you have to do something while you're waiting (and waiting), here with a brief record of my thoughts.


When the receptionist tells me that the wait shouldn't be too long, I wonder if she's being creative with the truth in order to control the hordes.

There are at least 40 people in here. Does that mean 40 people are ahead of me?

I should have brought more food.

Oh. There are two clinics. That explains why so many of them are looking more orthopedic than plastics.

This probably means I'm unlikely to get a cast. Phew.

Why does any area where the possibility that waiting is remotely involved insist on hanging up televisions and turning them to CP24 (the local 24-hour news station)?

If you're trying to keep people distracted from the calluses developing on their collective arses from the waiting, it would make more sense to have the sound turned up. Or the subtitles for the deaf turned on. Watching pretty faces talk and talk and talk while I can hear nothing is only captivating for so long.

Oh, look. They've just put a note on the board for the orthopedic clinic that the doctor’s running two hours late.

I'm hungry.

I can't read this book. This book needs me to pay more attention than is possible in a room that’s this noisy and bustling.

Let me try another one. Oh, Here If You Need Me, a memoir of a pastor working with the Maine game warden department. Cool.

What lovely writing. I'm really going to enjoy this book.

I'm hungry.

I can't listen to a book in public if the first chapter makes me cry.

The Orthopedic clinic is now running 2½ hours late.

That woman has really narrow feet. They're completely straight on both sides.

Why doesn't the Plastics clinic let us know how late they are, as well?

What else can I listen to? How about this one. A conversation between authors at the 2003 TimesTalks.

It's been an hour and a half, time to ask the receptionist what she meant by "shouldn't be too long".

Another half hour or so. That means two hours of waiting in total. Interesting definition of time there.

The orthopedic clinic is now running three hours late.

If I could use a laptop, I could've written two chapters for The Book by now.

That guy’s actually twitching. I would do - well, more than I actually am - if I'd only brought my cell phone for entertainment.

Hey! That nurse is calling my name. Only 2 hours and 20 minutes after I signed in. Positively speedy.

Why does the surgeon call me young lady when he looks like he's 20?

A pretty cute 20, actually.

He's asking why I want the moles removed. I'm taking this as a good sign.

Dude, it's nice of you to ask me if I want them removed today or to come back, it gives me a sense of control over the situation, but I've waited 2 hours and 20 minutes to see you and although I’d prefer not having them removed at all, we’re going for it. Start carving!

Brace yourself for the killer bee on steroids that they call freezing.

That was it? Not very killer bee-ish.

I'm not looking, I'm not looking, I'm not looking.

Oh. That was a lot easier than last time. Only one stitch each. Why is he not hacking out chunks this time? I choose to take this as a good sign.

Also, dude? Putting my moles in specimen cups labeled lesion 1 and lesion 2 seems to be a bit of a misnomer. They weren't lesions before you started cutting.

I can leave? Already? That took 10 minutes. I waited 140 minutes for a 10 minute procedure?

Stop questioning it, start running, you idiot.

Yes, I'll come back in two weeks to get the stitches out and hear if "there’s anything".

Run!


Having just recently watched Tinker, Tailor, Soldier, Spy, I’m calling them Gerald. R.I.P.