Wednesday, December 31, 2008

Sidestepping into Happiness

I was talking to a friend the other day about how this particular set of holidays used to be my annual experience of manic depression. Well, not the actual disease, but perhaps a little bit of insight into what it feels like. Christmas is my favorite holiday of the year and there is nothing about it I don't like. Happy, happy, happy. New Year's Eve, on the other hand, tended to send me into a spiral of self-loathing and wishing to jump off a curb, what with the not-so-subtle social pressure to take stock of the past year and find it wanting so you can come up with a number of resolutions that will magically fix whatever's wrong with you or your life asap. And inevitably, I would find things very wanting, somehow never quite having created the kind of life I’d hoped for. Sure, I accomplished things, but never enough, I wouldn't have found time to pursue my dreams, there was always something missing.

After I got my life back, that changed. And yes, I know that link shows up every New Year's Eve - although it is something of which I am aware and think of with gratitude often - every week, most days even - it carries some extra heft at this time of year. Because when you almost lose your life, life itself becomes enough. Life itself is the dream and having life, very little is missing. I have ambitions, still, I have things I would like to do with this life because without ambitions and something to work towards, things get sort of boring, but in essence, it’s all gravy.

But it’s hard to remember at times. Especially when the pain gets bad or an injury persists – nothing blocks the memory of life itself being enough more than pain above a certain level and you get greedy. You want not just life, but life with manageable pain. And when that doesn’t happen for a while, you lose perspective altogether and start believing things are really, really bad. You sink into it, get lost in it, forget. Become convinced that you’re very fragile, that you can’t do much of anything. You come to think that although you have life, this fragility will block you from living the gift of life the way you’d like to live it – with limitation, sure, nowhere near the place you were before it all went majorly sideways, but with enough ability that you find contentment in your smaller life. The you in the above being me much of this year, increasingly aware that certain aspects of life had closed to me forever, trying hard to let go and move on, but having a rough time accepting the loss.

And then Michele took AB and I to Wards Island and gave me the gift of coming home to water again. We planned the trip carefully to protect my shoulder, deciding to only walk a little way, finding the most direct route to the best place, expecting to be done quickly. But we weren’t. We kept going – well, more like stuttering, because I stopped to take pictures every couple of minutes (more will appear on my Flickr page shortly) – and somehow, wandered over half the islands. Later, I realized I’d been able to do this because of the constant stopping, as it gave my shoulder enough variety and rest that it didn’t seize up.

And that day on Wards Island, I got another gift: the knowledge that although my body’s pretty wrecked, I’m not as fragile after all, that even three years after my first dose of Enbrel, I continue to get stronger, continue regaining things I thought I'd lost forever, continue getting my life back. And that by giving up the known way of doing things, by stepping around, I can find my way to where I thought I couldn't go again. Past boundaries in place for years, not by pushing past and through my limits, but by skirting around them and in so doing, realize they're barely there at all.

It awes me that in this place of pain, within this life much smaller that it once was, I have discovered that existence is limitless, only constrained by mortality and the limits imposed by our ideas of the way things are supposed to be done. That with patience and turning the prism of perspective, you can find your happiness and a new world.

Thank you for reading through it all, thank you for being here. May the coming year see you sidestepping your limits and finding your happiness.

Monday, December 29, 2008

Holiday Stream-of-Consciousness

Sometime late yesterday evening, it occurred to me that it was Sunday. Which means that it would very soon be Monday. Which is one of the days I traditionally post. And I had nothing. Because sometime on Saturday afternoon, I remember being unsure about what day it was and it was officially the moment where the holiday mindset started taking over.

Things have been a bit busy lately – if by ‘a bit’, you mean unbelievably - and I’d made it even busier because I planned to create a good 10 days (at least) around the holidays where I could putter around, relax as thoroughly as if I were at a spa, lose track of time, eat fruitcake (hic), watch costume dramas like the BBC version of Pride and Prejudice, Bridget Jones's Diary (Pride and Prejudice, except with more mentions of the word bollocks) and Jane Eyre because that's what the holidays are all about. And in order to make this happen, a number of things had to get done and there has been way too long a time where I have at all times been aware of what day and time it was and how many things were left on the list. And that reminds me... In the past five days, I've had no list - at least not one worth mentioning - and it's been wonderful. Of course, the sitting around and drooling in front of the TV and no list was assisted by me getting several illnesses in a three-day period, some of which required antibiotics, because that's what happens in my world when I move too fast for too long and ignore my body's request to slow down. In the end, it throws up its hands, mutters 'bitch' and then makes me sit still by means of developing either an illness or an injury. Maybe I'll work on my listening skills in the new year...

Ah, the holidays. A good two-week period where everyone’s incredibly busy doing family things and where being an immigrant who lives far away from one's extended family really, really works. Aside from getting together with members of my chosen extended family a few times over this period, I usually try to spend it inside my apartment, going nowhere and seeing very few people and it is very, very good for the soul. And the writing urge, which needs solitude and the mental space that comes with not running hell-bent for leather every hour of the day to catch up with the list. And that's another thing I might work on for the new year. Less lists. Stop snickering out there - it's possible. Okay, so me without a list is not possible, but maybe I could reduce the amount of days where I need to look at it? Baby steps, people, baby steps...

Y’know, it's interesting. I started this post having no idea whatsoever what I'd be writing about, but just popped on my headset and started dictating to Dragon and what ended up coming out in among the nonsensical blathering (of which there was some, because there's frequently nonsensical blathering around here) was a couple of ideas that have been percolating for a while about how to make my life less hectic. I like those kinds of New Year's resolutions better than the ones where you promise yourself to lose weight, stop smoking, start exercising and then fall off the wagon 10 days into January. Of course, it's entirely possible to fall off the wagon if your resolution is to do less, so instead of making a big promise to make my life less hectic, which virtually guarantees that I won't stick to it, I think I'm going to promise myself to work at it, a little bit every week. That's attainable. Maybe in another year, I'll have achieved a little bit more balance. (again. Stop snickering)

What do you want to do next year?

(and if the answer is that you don’t want to think about it because it makes your brain hurt, go play this game of defending your Christmas dinner from sprouts that Lynn up the comments sent me. Not quite as demented as Flight of the Hamsters, but good for an obsessive bit of fun, especially when the guy turns green and keels over from having too many of them. I always knew vegetables were bad for you)

Friday, December 26, 2008

A Tink Christmas

For those of you who are new to my little corner of the world, I need to introduce the Tinks. Three years ago, my sister and brother-in-law created a set of beautiful twins named Morgan and Liam - I blogged about the day they were born here and John (a.k.a. TinkPapa) gave the background of the nickname on his blog (it's on the right sidebar, I'm too technologically inept to figure out the link to a mirror site) (and although their parents no longer call them the Tinks, I persist).

We all gathered at my mothers as usual on Christmas Eve and after a wonderful dinner, we attempted a bit of carol singing, as tradition dictates. However, the kids were too revved up about all the presents and given that they had already waited several hours, we proceeded quickly to the tree

Liam opens a book with pictures of himself over the past year (a Moster tradition) (Moster is the Danish word for mother's sister)

Morgan becomes Nisse and it suits her well

Janne (a.k.a. TinkMama) takes Liam for a spin

John and Morgan open presents together

the kids help
Ken open his presents

and lastly, Tuck Unwanted found refuge with me while the kids played with the rest of the Wonderpets.

Best moments of the night:

Morgan quickly got into the excitement face and statements when opening presents, repeatedly going wow, ooh and aah. Frequently followed by a slightly puzzled expression and saying "what is it?".

Ken had made a lovely fruitcake in which the fruit had soaked in rum since July (not being much of a drinker, I had one piece and got a little woozy). Toward the end of the evening as everybody were packing up and getting dressed to go, Liam disappeared into the kitchen and emerge with brown crumbs all over his face. When asked what he was doing, he said in a very satisfied said "eating cake!". I believe he fell asleep fairly instantly once they got to the car.

Wednesday, December 24, 2008

A Christmas Wish

Holly is the nicest person I’ve ever met. I don't remember the first time my friend Andrew introduced me to his new girlfriend - I think it was dinner somewhere - but I remember coming home and when asked by my mother and sister what she was like, I told them about how incredibly nice she was. Later, I also told them she was smart and articulate, may have admitted to being more than a little impressed with her career as a lawyer and told them how she was a warm, funny, generous and really, really good person.

Andrew and I had been best friends for years before he met Holly and much to my delight, she was the kind of person with whom it was easy to make friends, as well. I was privileged (and scared spitless) when they asked me to be a reader at their wedding - although I had done training sessions for a room of maybe 20 people, being on stage in a large church with many, many pairs of eyes on me on such an important day was a terrifying thought. But it was an honour to be asked and so, I girded my loins, practiced the essay about marriage from The Prophet by Khalil Gibran over and over again and shaking like a leaf, went up on stage, looked at Andrew (very handsome in his tux) and Holly (radiant in her mother's wedding dress) and proceeded to utterly mangle the text. I am not exaggerating, I am not being modest and self-effacing. This was the worst reading in the history of weddings. Ever. Later, Andrew made me watch the video and when mortified, I attempted to run away, he grabbed my wheelchair and held me in place (I had no idea he was that strong). However, I've been informed that the off-the-cuff congratulations I made after dinner when cornered by the videographer made up for it. I try to hold on to that. We danced a lot at that wedding and I still have the mental image of my father dancing like no one was watching - it's one of my favourite memories of him.

Five years later, during the week where we sat by my father's bed as he lay dying, Holly delivered their twins Ryan and Garrett in a hospital near the nursing home. I'm sure other considerations guided the decision of the delivery date, but being able to pop by and hold the children of my dear friends was a very welcome reminder of life during a hard week. It was also a beautiful week and not just because I spend it with my dad, but because it gave me another favourite memory of Andrew and Holly and their new expanded family.

Four weeks ago, Holly was admitted to the hospital with pneumonia and within hours, sedated and placed on a ventilator in the ICU. And for the next two weeks, we looked closely for signs of improvement, but aside from tiny, millimetres of signs that could maybe be interpreted as positive if you were desperate - and we were - there weren't any. The doctors kept telling Andrew how very sick Holly was, usually followed by "but she's very young and very strong", but mostly, they talked about how very sick she was. This, I have learned, is doctor code for dying. I had a very clear dream in which I saw her, Andrew and the boys, leaving the hospital, laughing and we held on to that, trying to believe it was prophetic, despite the doctors’ talk of the severity of her illness. And two weeks ago, they said the actual words, said that she was slowly dying and the only option was to perform surgery and scrape out the gunk in the lungs that used to be fluid, but now was solidifying. And then we continued to hold our breath while watching for improvement, an improvement that crawled slowly, with a snail’s pace, hard to see. But it was there, because about 10 days ago, one of the nurses told Andrew that Holly was doing much better compared to when she came in when she'd been "hanging by a thread" and our knees turned to water again as reality was brought home to us once more.

The way forward moved so slowly and being on a ventilator is bad for you, can damage the vocal cords irreparably and last week, they decided they'd have to do a tracheotomy to take her the rest of the way. They also started to lighten the sedation and things improved, so last Wednesday, the date of the surgery, they decided to wait a little longer. By Thursday, Holly was no longer sedated and on Friday, they took her off the ventilator and after 25 days of not breathing on her own, she did so again. And we all breathed deeply with her. Holly used an oxygen mask at first and by the next day, just the oxygen nose plugs. Sunday, the two chest tubes in her left lung were removed, she’s had solids, is talking and now we’re just waiting for the chest tube in her right lung to come out and for her to get to a regular room instead of the ICU. It’ll be a long recovery, but it doesn’t matter. Because there’ll be a recovery.

We got our Christmas wish. Welcome back, Holly!

Holly at her brother's wedding earlier this year
Photo by Andrew

A very happy holiday season to you all - may yours be as filled with joy as ours is.

Monday, December 22, 2008

Random December

Before we get going on the monthly Link-o-Rama, there's a winner to announce. I asked my friend Andrew to pick a number between 1 and 36. For very good reasons, Andrew haven't been able to read the blog for a while, so he was as unbiased as they come. He picked comment #31, which is Emelie from Sweden. Congratulations, Emelie! Send me an email at landers5ATgmailDOTcom and we'll discuss prints and addresses.

From Trevor, a musing on the 1 in 7 Canadians who have a disability. Via Broadsides, a wonderful video celebrating the 60th anniversary of the Universal Declaration of Human Rights and reminding us exactly what those human rights are.

While we are in the Broadsides archives, a wee thing on imperfection and the quest for the impossible, all summed up in two photos.

I got my Seated View 2009 calendar last week and was again astonished by the quality - really thick paper stock, the photos turned out beautifully and no, this is not a hopeless attempt at a sales pitch (although, if you feel so inclined, you can buy it here - now, that was a hopeless attempt at a sales pitch). The reason I am bringing this up in so gauche a manner is this: as I was looking through the photographs, sort of impressed by how well the photos looked enlarged, I came upon December. Which makes it sound like that was a surprise, but given that it's the last month of the year and I was looking at a calendar… ? Moving on! December’s image is this one

Instead of getting a Christmas tree, I decorate my ficus - less expensive, less messy and keeps the cat from getting stuck as she plays with the ornaments - and it took me a couple months into the year until the sun hit my living room in just the right way to realize that when we stripped the tree, we'd forgotten something. The photo (taken using my trusty macro setting) is therefore entitled The Forgotten Ornament. It wasn't until I saw it blown up to an 8 x 10 that I realized the lovely subtle light on the wee glass ball looks that way because it's covered in dust. When cropped and enlarged, you can actually count the dust motes, which made me laugh like an idiot because now the title works in more than one way. Initially, I was a little embarrassed at having this image on my calendar, but I figure we're all so stressed out in December that having proof of other people's lack of attention to housekeeping might help justify ignoring it while doing other seasonal things. It'll be my Christmas gift to you next year. A-hem.

Test your Christmas knowledge.

A new show is coming to Toronto. Aga-Boom. Which appears to be an ENTIRE show with clowns. I may have mentioned they creep me out? Needless to say, I won’t be getting tickets. The thought alone is enough to make me curl up in a ball and suck my thumb.

Moving on to the animal section of this post, which should be helpful in blocking out the clowns. Baby moose encounter a sprinkler - imagine having that in your backyard! – from Trevor again, who also included what to do with a pile of puppies who won’t go to sleep. Then there’s Maru the Cat from Japan , The Broccoli Kitten and while we are on I Can Has Cheezburger, remember the Cosmic Feline? Think it looks like this when it plays with us? LynnM – still blogless, alas - sent a test that’ll tell you if you’re a Crazy Cat Person (3 guesses what my score was) and seasonally, Bailey the Unknown Reindeer made me laugh so hard I couldn’t breathe (works best with sound).

Sort of animal-related, DavidG (also blogless – will you people get going already?) sent me a fascinating scientific paper called Chicken. With a fantastic video presentation. And if that doesn't set you clucking... I mean, chuckling, I don't know what would.

Bling is out and personally, I'm relieved. I’ve always been of the opinion that you should wear your accessories, not the other way around. Let’s hope scent isn’t far behind so we can go back to subtle levels of perfume that allows the people around you to take in oxygen instead of the present trend in which one should apparently bathe in the stuff.

And ending this link-o-rama like we began, in the disability world, via a comment over at Beth’s (unfortunately, I can’t remember who posted it there, so I can't give credit where it's due - if anyone knows, please leave it in the comments), Monster in a Wheelchair. Play the song. Please play the song. That line halfway through about the step had me howling.

Thursday, December 18, 2008

More Than a Little Overwhelmed

Yesterday, I found out that I had won Best Disability Blog in the Canadian Blog Awards and I am dorky and uncool enough to admit that I am ridiculously excited. Being nominated was a thrill and winning is an even bigger thrill.

A couple of weeks ago, I watched Barbara Walters "10 most fascinating people of 2008" and one of the people she interviewed was Frank Langella (who I've liked for many years). Langella is particularly “fascinating” this year due to his role as Nixon in the stage play and now in the movie Frost/Nixon, which is apparently getting quite the Oscar buzz. Ms. Wawa asked if receiving an Oscar would mean a great deal to him and when he said a very firm 'yes', she faked surprise and asked why. To which he responded "it would be disingenuous and absurd to say 'oh, it doesn't matter.' Of course it matters" and based on his vocabulary and honesty, I instantly developed quite the crush on the man.

Now, I’m not in the top ten fascinating people anywhere, nor am I even close to the calibre of Frank Langella’s babytoe, but his words resonate. It does matter. Recognition matters and I have decided that perhaps it is not quite so ridiculous to be excited, in fact, it may very well be absurd not to be. But I'm excited about more than the win - I'm excited that there is a disability blog category within the awards (thanks for making noise last year, Beth). It's a level of visibility and recognition that reflects integration. We may be fighting on a daily basis to achieve equality and integration in the three-dimensional world, but in the blogosphere, we are equal. And that matters.

I would like to thank the Academy... No, wait. Different award. I would like to thank Dave Hingsburger for his nomination and his incredible grace when he posted about the results and one of these days, I hope to express that in person (hey, we both live in Toronto, so it’s possible). He and the other nominees are wonderful bloggers who regularly challenge me to think deeper and if you haven’t already, I urge you to check out Chewing the Fat, Disadventure and Moon Phases: the Life & Evolution of Me. I would also like to thank you – yeah, you out there - for voting for me. Some of you have been here since the beginning 3 1/2 years ago and some of you are brand new. You being here, reading and commenting, matters and I am privileged that you choose to share your day with me.

This seems a perfect reason to have a contest to say thanks in a slightly more tangible manner. To enter, leave a comment, any comment, between now and Sunday evening, 6 pm Toronto time. Winner will be randomly selected and will get an 8x10 print of their choice from my Flickr page.

Now if I could only figure out how to put the flagwaving beaver on my sidebar… (and I can’t wait to see what kinds of hits that one gives me)

Monday, December 15, 2008


A little while ago, I ran into (not literally) a woman I know, making her way slowly and painfully and on crutches into the building in which she lives. As she has been using a wheelchair permanently for over a year now, no longer able to walk further than tiny distances requiring only a few steps, I was stunned to see her ambulatory and asked how come she was up and about. She told me that she'd been at the hospital for surgery and "they didn't want the wheelchair there". And as she slowly, ever so slowly, moved past me, the image of her face, drawn in pain and humiliation, the hospital bracelet on her right wrist and her feet sliding across the floor with each small step in an attempt to make the pain less seared its way into my brain while I had no words of comfort. I was speechless, her words ripping through me.

They didn't want the wheelchair there.

I knew that I wanted to write about this, but it's taken me days to get past my emotional reaction to a place where I could think in words. This is clearly discrimination and had it been me, I would've called the Patient Relations person and if that didn't help, the CEO of the hospital and then the Ontario Human Rights Commission, but that's only because I used to work in human rights and I know that taking away somebody's wheelchair is inappropriate, unacceptable and just plain wrong. Well, I would like to believe that I would have made these calls, but if you're going in for surgery, already feeling anxious, have carefully rearranged your life, lined up help and pet sitting, how difficult would it be to take the risk of having your surgery cancelled by insisting on your rights? Especially if you maybe weren’t sure about your rights, if all you felt was the wrongness of it, but didn't know the ins and outs of human rights legislation. This is a perfect example why I often say that in order to have a disability, you need a graduate degree in project management - not only do you need to know an intimidating number of different laws, building codes and community resources, but you also need to be able to run not just your own life, but juggle several doctors, agencies, attendants and other miscellaneous people who are supposed to help you (but so often make life more difficult). And then you have to have the heart of a lion to put your foot down and say no. Just... No.

And that's the intellectual side of it. The one that took me five days to get to, because for those five days, I was too busy dealing with this idea that because my wheelchair takes up the amount of room of an armchair, somebody could decide that it was not allowed to be there. And it's terrifying. My wheelchair is my freedom, my mobility and the thought of someone taking that away because... why? it would be in the way? has frozen my insides, has made me shake in fear, has made me furious beyond the capacity to think and well into incoherent hysteria.

You spend so much time building up a life where you are independent, live independently in the community, participating on an equal level with others that you forget about the other thing. You forget that someone else can, in a moment of carelessness, of thoughtlessness, of cruelty take it all away from you. That it is not just a flat tire that can bring home the reality of your inability and dependence, but more than equipment failure, another person can show you that your independence is an illusion, contingent on the cooperation of the rest of your community. And if one person in your community decides that today, they are not in the mood to cater to this philosophy, that today, it will be more convenient for them if you and your accoutrements are not in the way, you will no longer be independent.

This is why people with disabilities have not been granted rights, but instead given privileges. Because rights cannot be taken away. Because if they were rights, we wouldn't be put in a situation over and over again, each one of us on a weekly basis and sometimes more than that where someone else decides that today, our rights are negotiable.

After a few days of bouncing from one horrible emotion to another, I remembered Ashley, whose rights were so negotiable that they physically modified her to make it easier to take care of her and that's when it came back to me to me. The hierarchy of worth (I’d repressed that). That our rights are negotiable and therefore privileges to be magnanimously granted by someone who feels like being nice to the cripples because we are not worth the same as you. Because you don't see people who are not disabled having their legs chopped off because they take up too much room. Because the idea of taking away someone's legs - either by amputation or chemically rendering them inoperable - is ludicrous and unthinkable. Except not when you're one of us. When you're one of us, you are hobbled in the same way they hobbled slaves, except there is no need to chop off the end of a foot or cut the Achilles tendon. No need, because it is as easy as saying "we don't want your wheelchair here".

Friday, December 12, 2008

I Don’t Know Why She Fights It Every Year

Every December, when Steph realizes that's she's overcommitted herself with the knitting again, I make her a schedule. Or rather, a Schedule. In this document, I tell her exactly what she knits (and bakes, wraps, etc.) and when in order to get it all done by Dec.25. It's our Christmas present to each other - I get her through the gift knitting with her sanity relatively intact and she feeds my belief that when I run the world, it will all work out. We have a beautiful friendship.

Being the maker of the Schedule, it is perhaps not surprising I like lists. Lists are soothing, writing down everything you need to do a week, divided into categories of e.g., Do, Call, Email, etc., allows you to get a general overview of the insanity that is life, assess whether you will have a decent week or one in which you need to invest in several pounds of chocolate covered coffee beans and creates a sense of control. As I hit 40 some years ago and therefore allegedly am somewhat wiser these days, I do know that this sense of control is completely illusory, that life can explode at a moment’s notice (and frequently does), but that's why you allow yourself to move items off this week's lists and onto next week’s, thereby creating an equally illusory big chunk of time in which life can have an apoplexy should it need to. This is why my list for the week in mid-November had an item reading "Steph re: schedule", figuring that if we jumped on it early this year, we could avoid It. ‘It’ being the annual Christmas breakdown that Steph has when she can't do it all and I subsequently have when I try to cram a gazillion projects into a two-week schedule. So I asked, she said she was "fine", I decided not to challenge that, but mentally rearranged the end of the month to allow time for making a Schedule when she came to her senses.

What I had not counted on was Ms. Harlot being fully immersed in the Five Stages of Christmas. She'd entirely skipped shock and moved straight to an extreme case of Denial - and I quote "Dudes. I have this Christmas thing SO licked", which as far as I'm concerned is just asking for the Cosmic Feline to notice you. She then devoted an entire post to a change of attitude, claiming - am I the only one who detected a note of desperation? - that as long as she proceeded with confidence, " I AM going to finish. It IS going to be something I get licked. The Christmas knitting IS NOT going to get the better of me this year. I repeat, I have it licked". The fact that she acknowledged this might be a delusion would qualify that stage as Bargaining, with a soup├žon of Sadness and verily, by the next day, she'd reached Acceptance and asked me for a Schedule. Not entirely fully Accepting, the e-mail was entitled "do I need a schedule?" and included a list of knitting projects totalling 160 hours, adding six hours of baking, a day of work-that-can’t-be-knit-to and removing a perfectly lovely five hours of good knitting time for shopping. And giving me only seven hours of knitting time a day. As I was in the throes of a particularly enthusiastic life apoplexy of my own at the time (see Monday's post), I really appreciated the laugh. Once I was done wiping away the tears and only occasionally hiccupped in a giggle, I started hounding Steph for additional information such as events, concerts and parties that needed to be inserted in The Schedule, got a little busy with a deadline or two and by the time I sat down (metaphorically) to work out the puzzle, there were 25 days of knitting, baking, etc., and 21 days into which to fit these activities. This seemed a bit ambitious, even for my admittedly overdeveloped idea of what I'm capable of.

Luckily, while I wasn't looking, Steph had managed to knock off three projects, enabling me to upgrade from gibbering and tearing out my hair to intense focus and merely tugging at my remaining locks and Sunday, I presented her with the finished product (askew to preserve project confidentiality)

in which she will finish the day before the last present is due, leaving a full evening to

And "knit what you want" on the last day. She liked it. Called me overly controlling, but also omnipotent and y’know? I'm just fine with that.

Still, next year we're so starting this puppy on November 1.

Thursday, December 11, 2008

A Beginners Guide to RA: Being a Chronically Ill Parent

My next post is up at HealthCentral:

"Raising children is a challenge at the best of times and adding a chronic disease to the mix ups the ante on the emotional and mental resources required."

You can read the rest here.

Monday, December 08, 2008

In Which I am the Cat Toy of the Universe

I once developed a theory of how life works. In this theory, the universe is a cat and we are its toy. It makes perfect sense. You know how there are times where it feels that every time you try to get up, you get knocked down again? Am I the only one who thinks that’s exactly how a cat keeps batting away at a toy (or mouse) over and over again, patiently waiting between each swat until the "subject" starts twitching again? Until you just can't do it anymore and roll over, bear your throat (yes, I’m aware that’s for dogs, work with me) and whimper uncle. At this point, the universe/cat gets back up, an expression of "well, all you had to do was say you needed a break" and walks away to wash its face while you catch your breath. When you're back up again, this time with feet firmly planted on the ground, it comes back and meows in your face to play some more. And that is the Cat Toy Theory in a nutshell.

It all started a month a go when my DVD burner died and set off an avalanche of calamity, to the point where I’ve considered renaming my home Disaster Central. I got a new one, booked a guy to come install it and last Thursday, he did. When he’d finished, I asked him to take a look at my registry – figured the reason my computer had slowed down in the last month or so was a cluttered registry and I know enough to know that I don’t know enough about computers to fix that myself. He looked at it and told me that I was thisclose to the blue screen of death and there was nothing he could do. Considering I’d just spent $200 on a new DVD burner and installation, this was not amusing. In retrospect, there are several indicators that I was hosed on many levels and I susp[ect Staples Easy Task Force is not there to fix your computer, they’re there to convince you to buy a new one. But that realization came later, because I’d been having so many problems with the thing that he made perfect sense. As I was considering buying a new hard drive and paying to get that installed, it occurred to me that a new computer wouldn't cost much more than that. And I'd been planning to get a new beastie within the next year, so I decided to go that route and through a friend of a friend made arrangements to get one built (!) with so many bells and whistles it’d fly so fast, it’d practically levitate. While this was being done, I started backing everything up. Which takes a surprisingly long time, even though you back up most of your stuff every month.

The day after, Mojo went to a specialist in internal medicine and was subjected to enough tests that I probably financed a new wing of the clinic. And started wondering if Mojo’s a relation of WT’s Belle, a.k.a. The Walking Disaster. The vet was convinced she had ulcerative colitis, with a small possibility of cancer. I bit my nails for a week and then the vet called with the results. Aside from a vitamin deficiency, the tests shower that Mojo is a completely healthy cat. The major bowel issues, extreme stomach acidity and resulting pain, lethargy, barfing, etc., which clearly compromise her quality of life significantly have left no mark anywhere in her system. After much research, the specialist has concluded that The Wondercat has what for cats is a very rare condition: gas. And so now she’s on antibiotics (to get rid of bad bacteria), B-12 shots and a friend of mine has volunteered to for the next 3 weeks attempt to medicate The Hellcat with Ovol (for babies with colic), which she tolerates, as well as an anti-acid/motility liquid that has her spitting and clawing and squirming like an armful of eels. I have good friends.

Add general wrangling of agencies and individuals mandated to help, but requiring more than usual handholding and cattleprods to actually move and then only slowly, renewal of various memberships, insurance, anti-virus software, replacement of software (a pox upon Microsoft’s name) and when last week, it started looking like the batteries on my chair are going (those suckers are way more expensive than a pair of AAs), it became clear that I have two options. Well, three, I guess. Take to my bed and weep (boring); watch a lot of movies with explosions and mayhem while I snack on things that aren't good for me; or start a business on the nearest street corner wearing an electric blue spandex miniskirt and too much makeup.

While I decide, I’m going to surrender, whimper uncle and hope the blasted Cosmic Feline clues in and gives me a break...

Wednesday, December 03, 2008

Once More with Feeling

I’ve tried, I really have. Done my best, followed all the rules, done what everyone do and while they manage to nourish life and growth, I bring death and destruction. I confess.

I have committed serial herbicide.

It wasn’t supposed to happen – I don’t mean to. Every time I get a new plant, I pay attention to the instructions, google some more and follow them carefully. But sometimes, I get distracted and forget to water when I should or do when I shouldn’t and before I know it, the leaves start turning funny colours and the whole thing droops, drop bits and… is gone. Happens even when I don’t forget or have one in my house, beuing cared for by others. The conclusion is inevitable: I have a black thumb. My damn aura is a black thumb.

Once, I got a pot with babytears at the exact same time as AB and did exactly what she did every day and after 2 weeks, hers was flourishing, overgrowing and mine was a collection of black tendrils in a bit of soil. She may still have the descendants of hers, while I have killed more plants than I care to remember since those days, almost 30 years ago. I mean, I've even killed cacti!

There are a few odd exceptions to the rule. I got a ficus benjamina as a house warming present when I moved into my apartment 13 years ago - at the time, it was a modest little thing, about the height of a six-year-old. Now? Now it looks like this (please ignore the mess)

I suspect it's mainly because I don't touch it. I don't even speak to it. Susan, who does my housekeeping, waters it once a week, one of the other attendants turns it twice a year and occasionally, people will pick off yellow leaves (which it develops with precision every October) and in the spring, I get someone to cut off the dead branches resulting from the leaves that fall off over the winter. And somehow, despite this kind of plant being notoriously 'nervous' and difficult to cultivate, it's taken over my living room. As well, I have a money tree on my bathroom counter consisting of three no-longer-braided branches that's almost reached the ceiling (now if only my bank account reflected this growth) and again, I suspect it's mostly because aside from watering it when it looks dry, I pretend it isn't there. But these are my only success stories of the last 13 years (okay, of my life), which is annoying because I'd prefer to have the house thronged with plans. But I've learned my lesson, no longer wish to inflict pain and suffering on various greenery and just don't buy plants anymore, because it just seems cruel and inhumane.

This past Saturday, I went to a tiny local craft fair in which a woman, who’s a horticulturalist, had set up a table with a number of plants for sale. I explained my 7redicament and in exchange for $7, she let me adopt this

This is a Chinese evergreen. This "thrives on neglect". We are a match made in heaven.

I''ll let you know if it's still alive in the new year.

Monday, December 01, 2008

A Disability Blog?

Thanks to all of you voting, I've made it to the second round of the Canadian Blog Awards in the Best Disability Blog category and I’m beyond thrilled (does that make me more dorky?). Last week, I was all humble, saying that it was an honour just to be nominated and it is an honour - it means something that someone thinks I might be “best” at this thing I do. It also means quite a lot of something that many other someones agreed and voted for me. And by now, I’m so tickled that I made it into the second round and, just in case, am working on my "Oscar nominee who didn't get the award" face, while being really, really grateful that when the results are announced, no one will be shoving a camera in my face and broadcasting it to the world. Which is a long-winded way of saying thanks so much for your vote and if you are still so inclined, I’d very much appreciate your vote again. No registration or Canadian residence needed and it's all over by this Sunday. And while you're voting (assuming you're voting), despite her likely not needing my endorsement, go vote for Steph here and here. She's damn good at what she does.

Something interesting popped up during this whole process. Several people seemed surprised that I was included in the category of disability blogs and more than one said that The Seated View is "so much more than that". And it made me think. About what makes a disability blog and, by extension, what makes a person a disability advocate (which seems inferred by the disability blog thing). We're back to identity again - it seems to be a theme in my life lately.

The Canadian Blog Awards defined "disability blog" as - I vaguely remember, but can no longer find - having 30% disability content and that's probably about the amount of posts I write that touch on disability issues in one way or another. As Carrie said, this blog is about my life - the disability is part of that, but it isn't all of my life and this experience made me realize that the idea I had when I started this blog may have worked. That this blog has reflected my view of disability and, notwithstanding your (the readers) natural brilliance and refusal to stereotype, in a small way, my blog may have succeeded in communicating my philosophy to the internets.

When you have a disability, you spend every day educating others in some way or another. Because when you have a disability, people have ideas about who you are and what your life looks like - mostly, these ideas are about who you aren't and what your life doesn't look like. There's an awful lot of can't in those stereotypes and being in a position where you have to prove pretty much daily that yes indeed, you can, that you are a real person with a real life that looks surprisingly like everyone else's is, quite frankly, exhausting at times. But still, you do it, because there is no choice. Because submitting to this idea of being a lump of asexual meat sitting passively in a corner bemoaning your lot, invisible and powerless within our culture is, equally frankly, obscene. So you fight and usually, that fight means living - partly because that's what people do, but it also means having opinions, being involved and making sure that you are a little bit more visible in the right way, in your way, not in the lump-of-meat way. And it means that in some respects, your entire life becomes a political act. Buying groceries is a political act, because the assumption is that someone will do it for you while you remain "wheelchair-bound" at home (or in a home). Going out for lunch or a drink with friends is a political act because, as someone once told me, they had no idea that WheelTrans took you anywhere but hospitals and doctors’ offices. Holding hands with your lover in public becomes a political act because people don’t expect that you have the desire for love or well, desire or that someone might find you hot.

Most of the time, living my life is just me living my life and most of the time, when I become aware of how much living my life is an act of advocacy, it’s a surprise. Often, it is the reactions of others that make my life a political act - I was just having a daiquiri with a girlfriend or holding the hand of someone I really like. It was that other person's reaction to my going about my life that changed what I did into something more than buying butter and orange juice, changed it into becoming advocacy. And it is the fact that many of the strangers I pass on the street every day will be surprised to see me on the way to the bank or the grocery store that has over the years, in many small ways, shaped my decisions about how I go about just living my life.

And at this particular point I'm trying to avoid the conclusion that despite my claiming that disability is only part of my life, I have just painted myself into a corner with a conclusion that all of my life is about disability. Am I the only one who feels like whimpering right now? Let's call it being about advocacy instead. It still sounds a bit tiring and makes me want to talk about reality shows for several days, so I’m going to stop now.

I hate it when I make my brain hurt...