Monday, January 31, 2011

Random January

   
Big deadline tomorrow (about which more shall be revealed later this week) combined with an irritated shoulder makes this Random post a little short. Before I get going on the link-o-rama, I’d like to respond to a couple of comments from a couple of recent posts.

Thanks for regarding who suggested alternate names for Gilbert/Ramona – I haven't had a chance to run them by him/her yet, but will keep you posted on the progress. And to Tine Beest who offered to research how to find out the sex of a dragon, I can say nothing by thank you and if you seriously want to spend your time on this, I am more than happy to wait until May - the idea that there may be information on this in Chinese medical text (which I assume is what the Materia Medica is) has me agog with curiosity.

In respect to the vagueness about the agency that is messing with my life, Julie asked if I could give more details to enhance understanding. Unfortunately not right now, perhaps in future and yes, I am considering all options. I'd also like to thank you all for your concern - it helps to feel the support.

And now for the links!

Mor sent me a fascinating video about a giant Yosemite Slurpie and Janet forwarded the Best Ramp Sign Ever. Do you have an autoimmune disease? Bad allergies? Laurie sent me an interesting way of addressing that problem. And I have no intention of trying it. The teeth are one thing, but that quote about then just sort of "walking out" is still giving me the shudders.

Trevor's contribution this month include a brilliant flowchart to determine whether something is food, a story about a gorilla that walks like a person and a tale from the Disney trenches. He also sent me five terrifying online trends that were invented by the news media and while we are in media-related nonsense, and Arkansas store has decided to no longer protect tender eyes from the reality of Elton John's face lift. Okay, they were protecting the impressionable from something else, but what did the man do to his face??

The Boy sent me this link to before and afters of cats found by animal shelters in various bad conditions. The photos hurt your heart, make you happy and also, I've had to fight the urge to go to the nearest shelter and adopt 17 cats. And speaking of newly adopted, here's one that's a definite child of Basement Cat. A fantastic scarf, fallout from the Angry Birds obsession - did you see the trailer for Angry Birds in Rio? - and the best custom car paint job I've ever seen. If you're colorblind, you may be able to relate to this one and you will definitely want to watch this video - of course, most of the "Hey Ash, whatcha playing/” videos are. And into the political, a video about a rainbow conspiracy (I had no idea and I'm glad I watched it), Stephen Colbert on Sarah Palin (the most brilliant analysis of her video in the wake of the Arizona shootings I've seen) and lastly, "we will not be silenced" - from Egypt.
  


Friday, January 28, 2011

In Motion

  
And then there are the people who make your life easier.

My wheelchair has for some time been in need of a new motor. There's an odd clunking noise coming from the vicinity of my right rear wheel when I drive and this week it was finally time to get it done. While I was there, we’d take a look at it very puzzling issue that means I have to turn on my wheelchair twice before it wants to go - we tried replacing pretty much everything, but it still persists. The theory was that it was related to the right motor.

I've lived in Toronto for almost 30 years and since the very beginning, I've chosen Motion Specialties for repairs, equipment, etc.. 30 years ago, it was a small family business and although it is now larger and more successful, it still has the feel of a small family business. Most of the staff have been there for years, even decades and they do the job because they're passionate about helping people like myself get on with their lives. Although I like everyone I've ever met at Motion, it is the people in the shop who are closest to my heart. The women who organize the schedule for the trucks on the road who time and again have helped me out of a jam, responded with charm, caring and efficiency to a panicked call and whether it was a flat tire or a  that have reacted like a bucking bronco, made sure that someone comes to help. There are the seating professionals who make sure I'm comfortable - no small feat, especially after the fibromyalgia. And then there are the repair guys. Dave the Wonder Repair Guy is one of this tribe of MacGyvers but everyone I've met is passionately dedicated and talented to the point where I sometimes think they can communicate with electronic bits inside my chair. They do custom work, altering standard wheelchairs into something comfortable and futuristic and I have yet to see them daunted.

Well, okay… Until my current chair (aforementioned bucking bronco that sometimes doesn't buck at all) showed up. They keep it going, but we have long since stopped calling it a lemon and now have the theory that it's possessed.

So there I was, at the shop, my rear wheels off the ground, Dave B. - another Wonder Repair Guy - tinkering away at my motor and some other things and it seemed to do the trick. After a couple of years the mysterious rebooting requirement and clunking seemed gone and I was ecstatic. And then I came home and realized that the reboot’s still around. I'm thinking of calling my chair Linda. It's annoying, especially considering I've had a Storm Arrow before and the first one was the little engine that could, lasting a good 10 years. It's also annoying because this thing was hugely expensive, but none of it is the fault of the guys at Motion and I'm pretty sure the manufacturer isn't talking to me anymore after a couple of letters – mostly polite, yet frustrated - I sent them. But I sidetrack, because here comes the amazing part.

I talked to Dave B. and we agreed to leave things until April when I’d come in to get my chair cleaned. He’ll do some thinking between now and then and I was fine with that. And then, a couple of hours later, just before Motion closes, I realized that one of my motor release brakes wouldn't stay down, which means you can't push the chair. Yet another panicked call to Motion, I talk to Dodi who organizes the service calls and we have a loose plan that I'll come in today around 1 PM. She goes to talk to Dave B., I arrange another ride - not WheelTrans, because my body wouldn't be able to handle it, but a private company that will cost me a lot of money, but in exchange, it will arrive on time and go straight there - and I chew my nails while I wait for her to call me back.

She does. Dave’s coming to my house this morning at 9:30. And yet again, I am overwhelmed with their commitment to making my life work. They should give workshops.

If you ever need any sort of disability/mobility-related equipment, call Motion. Tell them I sent you.
   

Thursday, January 27, 2011

The New RA Criteria: An Interview with Dr. Gillian Hawker

   
This is a very cool time in the field of rheumatology:

"One of the many exciting recent developments in the field of rheumatology was last year's development of new criteria. There's been much discussion of these criteria here on MyRACentral so to learn more, I interviewed Dr. Gillian Hawker, who was part of the working group that created the criteria."

The rest of the interview is here.
  

Wednesday, January 26, 2011

Game Theory

   
Okay, I admit it. I'm cranky as hell.

It all started with that "medical professional" to which I referred earlier this month – y’know, the one that wrecked me by not respecting my boundaries. And although I am much better than I was, the emotional fallout has been somewhat significant.

It's funny… well, not funny ha-ha and not quite funny peculiar, but I've been thinking about anger, more specifically about the angry stage of grief. I have gone from bad to worse enough times that I am intimately familiar with the grieving that has to be done when you lose yet another ability. But this one was different. In this one, I went from ridiculously well to totally screwed up and I remember thinking more than once that it helped me better understand the feelings experienced by someone who goes from being healthy to getting a diagnosis of chronic illness. It's a different kind of anger, not more or less - whether you go from healthy to not or from messed up to more messed up, quantifying emotion tends to be unhealthy. And maybe it was that I had someone to blame that distilled and focused the rage, because rage it was. An incandescent desperation tinged with fury and helplessness because although I can complain about the person, it won't give me back what they took from me. It won't give me back that ridiculously pain-free state I experienced for about two months and whereas it is possible I will get it back, right now it doesn't feel like it. Right now it feels as if someone had waved a magic wand, given me the gift of a life so outside my frame of reference that I couldn't find words to describe it and just as I'd started to believe this could be my life, the rug was yanked out from under me. Grief smacks you sideways when you least expect it.

And then there's another thing. Because just as I’d progressed somewhat, there was another thing. This one is less than a week old and involves a certain agency - which shall also remain nameless, because I'd like to believe I have a little bit of class - that has decided to randomly, instantly and what feels like capriciously take over my life. This is an agency that is mandated to help me, but which currently has engaged in a process that threatens my ability to live my life the way I currently do. So my days have been sucked into meetings, e-mailing and spending all my energy on protecting my life. And that incandescent desperation tinged with fury and helplessness is back.

As is the part of me that's a political animal, because yet again I experience that wonderful event known to so many people with disabilities, the one where the people who are supposed to help you - indeed get paid to help you - decide to screw with you. The one where they wade into your metaphorical living room - and sometimes your actual living room – and start chipping away at your existence. Nevermind that you have responsibilities, obligations, plans - you have no choice but to let them, because if you say no, the service gets removed and your ability to live your life depends on that service. This is one of the reasons having a disability is a full-time job.

I've been thinking of game theory for a while, initially thinking to describe it as my life being a Jenga game where you take away one small thing and it all falls to crap, but I think it's more than that. I think it's actual game theory. Of course, I'm not a mathematician - in fact, I sort of think I may be math dyslexic - but I looked it up. Without spending hours researching it (because I need those hours to deal with aforementioned agency), Wikipedia tells me that something-something-something-math- stuff (see? Math dyslexic) is about how "an individual’s success in making choices depends on the choices of others."

And sure, game theory can be applied to as all, but when you look at the lives of people with disabilities, it has an extra twist. Because my ability to live my life the way I do - everything from having a pee to being able to work - depends entirely on the choices of others. And when those others decide that their goals supersede mine, the incandescent desperate rage makes me wonder if my head isn't splintering into tiny pieces. It's not that I don't understand that certain things need dealing with, it is the sheer arrogance and certainty with which these others wade in and take over that makes you realize that any rights you may have been told you have aren’t rights at all, but rather privileges bestowed upon you by someone who in some way owns you. Because if they were my rights, these people wouldn’t be able to take over my metaphorical livingroom and my actual life.
   

Monday, January 24, 2011

Adoption

  
A little while ago, we went to the ROM to see the terra-cotta warriors from China and along the way, discovered that something else had come along with the exhibit. Specifically, something looking for a forever home: – a nest of dragons.
 

There was much hemming and hawing, but one in particular attached itself to us and we had no choice. Especially since its name became crystal clear as we were making the adoption arrangements: Gilbert.

Before going home, we took Gilbert to see his ancestors from a different branch of the family tree


He was very excited


When we came home, we introduced Gilbert to Lucy and after an initial meet and greet, they've mostly ignored each other


Gilbert made himself a nest along my couch, next to Lucy's perch (the arm of the couch under the green towel) and they snooze happily together, yet apart.

  
In an interesting twist, within 24 hours Gilbert started emitting a decidedly different vibe, which claimed that his name was Ramona. Since then, these have alternated - apparently, Gilbert/Ramona is in flux. Except for the vibe, we have nothing on which to base a name, because although we have investigated the matter in Google, no one seems to be able to tell us how you determined the sex of your dragon.

It has occurred to me that perhaps we should find a different, less gender-specific name - any suggestions?
  

Wednesday, January 19, 2011

Parallel Reality

   
The first time I realized just how different my reality was from that of other people was several years ago when I was recounting a visit to my rheumatologist to a couple of friends. I talked about how one of the assessment tools she used in the physical exam was to press on the sides of the middle joint of my fingers and I forget exactly how it came about, but my friends told me it wasn't normal that this hurt. And I had one of those moments where the world comes to a screeching halt, complete with that needle across-a-record sound and I looked at them, gobsmacked. Really?? Really, they said. And then I squeezed the sides of the middle joint on their fingers and they kept telling me it didn't hurt and I don't think I really believed them, because of course it hurts. This had been the way it had always been for me and although I knew that other people didn't have swollen joints or that particular bone grinding pain, this small aspect of my reality had never registered as being because of the RA. It wasn't until I began taking Enbrel that I checked and lo and behold, when your RA is under control, it doesn't hurt to squeeze the sides of your middle finger joint. Who knew?

This weekend, I had another one of those moments. The Boy and I were having a conversation and I was describing how a specific tendon was giving me problems where it attaches to the bone and he remarked that I had an interesting relationship with my body. Oh? I inquired and he proceeded to tell me that regular people are only vaguely aware of how their body works as they move through their day and certainly not tuned into the exact spot where a tendon attaches unless they had a bad injury. And yet again, I was gobsmacked at this peek into a reality so different from mine. I can't always feel all the places where my body's collections of tendons and ligaments attach to various other bits of me, but there are enough of them that are vocal at one time or another that I am exquisitely aware of the construction of my body. So, seriously?

It must be so wonderfully quiet where you people live.
    

Monday, January 17, 2011

Decision, Results and... Bookclub?

   
Last week, I was trying to make a decision about something important and had the hardest time. The Boy and I was hashing it through, talking pros and cons, imagining different scenarios - well, I was hashing, he was asking gentle questions and probably enjoying watching me spin crazily like a hamster on speed. After a protracted discussion monologue, he told me about this very cool decision-making aid. To wit: it is said - in this case by The Boy, although he mentioned having heard it elsewhere - that when you flip a coin to make a decision, the minute the corn leaves your hand, you know which side you want it to land on, knowing that if it falls on the other side, you'd want to do best two out of three. And when he said that, I knew what my decision had to be.

It turns out that posting a blog entry in which you ask your readers to pick a book for your works much the same way. The minute I posted, I knew which book I wanted to read first. Not surprisingly, knowing my predilections for all things salty, it was The Whale, but alas, it didn't win.

The results are as follows:

Abigail Adams              4
The Whale                   1 (by email)
In Defense of Food      1
The Pain Chronicles     3
Infidel                          2

Well, I think that's the result, anyway. A number of people seem to have the same problem I had in choosing which one, mentioning two or more that sounded interesting. I wasn't really sure if those comments meant they voted for several books, so I decided not to tax my tiny little brain and not count them in the final tally. However, had I not, it would still have been a close race between Abigail Adams and The Pain Chronicles, with Abigail winning by a nose. So, Abigail it is.

This is not to say that the rest won't be read - I have a half a mind to put these five on my nonfiction reading list (which will be interspersed with plenty of fiction), so it's likely that all five of them will be reviewed at some point in the next several months.

I have a thought… Want to do a book club? It'll take a while, because reading audio books takes longer than regular books, but if you want to join in, pick up Abigail Adams and start reading. We'll discuss sometime in February.

Thanks for playing!
 

Thursday, January 13, 2011

What You Need: Planning Your Future with RA

   
It's January and that means my inner planner has come out to play. This week, I inflict it on the hapless users of MyRACentral:

"There you are, a diagnosis of rheumatoid arthritis ringing in your head and a prescription for scary sounding medication in your hand. You been told that this disease cannot be cured, only controlled and that it will be with you for the rest of your life. It's enough to make anyone dizzy. Will it take away your dreams and swallow up your life or is it possible to live around it?"

You can read the rest of the post here.

p.s. want to plan my immediate future? Vote for my next book to read/review.
  

Wednesday, January 12, 2011

Pick My Book

   
I have a lot of audio books. I'm not quite at the book version of SABLE - Stash Acquisition beyond Life Expectancy, for the non-knitters among you - but getting there and it's time to do some stash diving. More specifically, it's time to get a bit edified by choosing something nonfiction. But which one?

A couple of years ago, I did a little experiment and it was a lot of fun, so I thought I'd do it again. I'm going to list five of my top candidates for next nonfiction book to read, ask you to vote in the comments and then read and review the book that gets the most votes. Ready?

Abigail Adams by Woody Holton. I've posted before about my reaction to John Adams , the  HBO miniseries - I enjoyed it thoroughly and learned a lot. One of the things I learned was that I wanted to know more about Abigail Adams. She was her husband’s equal partner and staunch supporter, frequently acknowledged by him as being the smarter of the two. Had things been different, she might've been president.

The Whale: In Search of the Giants of the Sea by Philip Hoare. No list like this would be possible or complete without an ocean-related book (me? Obsessed? Whatever makes you say that??). Hoare is a British biographer who is himself obsessed with whales and this book is described as "a deeply moving and thought-provoking biography of the planet’s toughest, yet most vulnerable of prehistoric survivors." Sounds wonderfully intriguing

In Defense of Food: An Eater's Manifesto by Michael Pollan. This book was named one of Amazon's Significant Seven (whatever that is) in 2008. Described as a "shocking yet essential treatise on the industrialized Western diet and its detrimental effects on our bodies and culture," this could be one of those books that has your ranting for weeks.

The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering by Melanie Thernstrom. The title is quite a mouthful, but if what's inside this book lives up to it, it should be a terrific read. Publishers Weekly says it is "an exquisite, meticulous history of medicine’s quest to alleviate pain" blended with the author's personal experience with chronic back pain. It sounds like a good one.

Infidel by Ayaan Hirsi. I’ve wanted to read this book for years and a couple of months ago, there was an excellent sale on Audible and I finally bought it. Hirsi is a fascinating person who seems comfortable being controversial and Publishers Weekly describes this book as delivering "a powerful feminist critique of Islam informed by a genuine understanding of the religion."

Which one do you vote for? Leave a comment between now and Sunday at 6 PM and I'll start reading on Monday. Thanks for playing!
   

Monday, January 10, 2011

Boundaries

   
Recently, I had the unmitigated joy of meeting a new medical professional. As part of this meeting, a bit of an assessment of my upper body - particularly shoulders and neck -was deemed necessary. I made sure I did my usual thing, told them that due to various injuries, damages and fibromyalgia, they ought to treat me like a rotten egg (it’s a handy shortcut description). I furthermore invoked Rule: #2 that I trot out whenever anyone is in a position to lay hands on me, namely that should they wish a part of my body - say an arm, a leg, etc. - to be moved into a particular position, ask me and I'll do it, as when other people move my limbs for me, it's easy to take the movement beyond my boundary, which will hurt for days.

And now for the interactive part of this post, in which you get to guess how well that went. Your first clue is that aforementioned "unmitigated joy" may have been sarcasm.

I had to twice reiterate that bits of me should not be encouraged to move beyond where I had moved them and let's just say that the end result of this assessment was that I incurred a rather significant injury of my neck and shoulders, characterized by an extreme seizing up of every muscle and tendon available. Essentially, I now have whiplash all over.

But it doesn't stop there. Because when I continued to participate in the process, politely and very Canadianly taking control of my medical care - I don't just preach self advocacy, I practice it, too! - aforementioned medical professional took it as a personal attack and got mad.

I am in the lucky position that most of the medical-type people I've encountered in the last decade or so have been good team players, people who listen, pay attention and fully support an empowered patient. However, every now and again you run up against somebody who believes that they’re the expert and you should do what they tell you (my friend Beth is an expert in this type). Furthermore, if anything you say does not fit into their knowledge base, they dismiss this as impossible to be true so their reaction becomes to either treat you as if you're crazy or to act as if you're trying to impugn their integrity. This is also the type of person who will diagnose you as 'challenging' if you ask questions. They have their place - they are excellent if repairing or rehabilitating a simple fracture that will heal completely, leaving no long-term effects. However, they have no idea what they're doing when it comes to someone who lives with a chronic illness.

When you live with a chronic illness for any length of time, you become an expert in what it does to your body and your life. You know what you can do, what other people can safely do to you and most definitely, you become an expert in what shouldn't be done. When a medical kind of person treats someone who has a chronic illness it is beyond essential to approach it knowing that they are dealing with that person's reality. Not the medical person's version of their reality, not what they accumulated through books or practice about what Chronic Illness A or B usually does to a body and most definitely not ignoring expressly stated instructions.

It all boils down to respect. Respecting that we are an expert on our life - not in their specialty, but on our life - respecting our experience as valid, regardless of whether it fits into a specific paradigm and let's face it, just plain respect for another person. Because that's when these people are treating - not a case, but a person and every individual is different. And every person's experience of their illness is different.

Which is all very theoretical and that’s the only way I can write about this. Because I am sore, upset and so angry I want to throttle this person. Only problem is, it won't get me back the time I've lost to sitting still and healing and besides, for now they are my only option. I am, however, in the process of finding a replacement.
   

Tuesday, January 04, 2011

Full Dark, No Stars

  
Stephen King has another book out and naturally, I got my hands on it within hours of it being available. I waited until my vacation to dive into it, though - exactly until my vacation. One minute past midnight on December 17, I dropped the more serious, "literary" book I'd been reading and picked up Full Dark, No Stars.

This isn’t just one story, it's four novellas and they push the envelope more than King normally pushes the envelope, which is to say quite a bit. In his Afterword, King talks about how he likes putting ordinary people in extraordinary situations in this book is very much about that, except this time it is (for the most part) without the interference of things that go bump in the night. These are stories about what happens to people who commit extreme deeds or who experience extreme/extraordinary events and what happens within them afterwards. King also mentions in the Afterword that he likes fiction that is "propulsive" and "assaultive" and they certainly qualify as that, as well.

1922 and Fair Extension are both written from the point of view of a male protagonist and Big Driver and A Good Marriage are written from a woman's point of view. I'm pretty sure I could write a post on each of them and in that sense, King definitely achieved his goal of getting his readers to experience the stores emotionally while they read them, waiting for the thinking to happen after. Because three of them in particular made me think and I'm still thinking.

1922 is in many ways vintage King, except with a slightly different slant. The story takes place in the eight years between 1922 and 1930 and I think it's a bit of an experiment in writing in a different era. As such, it succeeds (inasmuch as I know anything about writing in the early 20th century), offering a fascinating look into farming in the middle of the US just before the depression. However - and I'm sure this is a matter of taste - it didn't make as big an impression on me as the other three stories did and in fact, I think it should have been tightened up a bit.

Big Driver is hard to read. Our protagonist - a quiet, gentle woman who writes quiet, gentle knitting mysteries - is raped, beaten and left for dead and that's just the beginning of the story. The rest is about what happens to and within a quiet, gentle woman who experiences such horror and King doesn't hold back. At all. It's hard to read, but ultimately worth it. A Good Marriage is about what happens to another gentle woman when she discovers that her husband has kept a very big secret. This being Stephen King, the secret isn't anything as mundane as an affair or a gambling problem, so you can probably guess what kind of secret we're talking about. Given the Canadian very recent real-life horror of Russell Williams, this one became much more real than it might otherwise have been (if you don't want to know any details about this story at all, don't click on the link)

I started writing this review in my head while I was still reading the book and started out thinking I'd describe it as being about what happens to people who experience or do something extraordinary. The story called Fair Extension is the one that made me amend that to include people who experience something extraordinary or who commit evil. These are all harsh stories, very dark stories - the title Full Dark, No Stars is very accurate - but Fair Extension takes it to a new level of ruthless. It goes past harsh, puts the protagonist in a particular situation where the must make a choice and having made that choice, take it to the logical (insane?) conclusion. These are uncompromising stories, but this one gave me the willies. It's cold, so cold. As a writer, I consider it a lesson in how to let the story happen without putting on the brakes because you yourself are uncomfortable. As a reader? I'm also impressed - this one will stick with me. They all will, but this one will live in a different place.

I could write another post on Stephen King and women - I find his experiments with writing from a female point of view fascinating. It's very difficult to write the opposite gender and King does it well although his heroines tend to be a little too mildly perfect for my taste. Regardless, the fact that he genuinely likes women is very obvious in his stories (despite the horrible things that happen in their lives).

And now to the narrators and I've saved them for last, not just because that's what I tend to do in these reviews, but also because I can't quite make up my mind. The stories are read by Craig Wasson and Jessica Hecht and they do a good job – Wasson is particularly terrific in Fair Extension and Hecht is very effective in Big Driver - but I'm sure you can hear the but. The thing is, I don't know if it's the readers or that these stories are written differently than King usually writes. I'm used to being able to hear his rhythm and in these stories, I couldn't. In my experience, some narrators do better at capturing the rhythm than others, but I'm pretty sure that the fact that all of these stories in many ways did not feel like familiar King is probably due to the author writing in a different space. In which case, the narrators did a beautiful job.