Monday, April 27, 2009

Living back from the Edge

When you’ve been to the brink, to almost-death, to you can see it from here without binoculars, it changes you.

In the beginning, it is overwhelming. The world is overwhelming. In the beginning, I was regularly brought to the brink of tears by a perfect pepper, by the sun shining through a leaf, constantly reminded of the astonishing miracle that is living. In the beginning, you're just happy to be alive. Each day is a gift you receive with gratitude, the knowledge that you almost didn't have it, almost missed the rain, this moment of your cat purring on your lap, this opportunity to talk with someone you love. In the beginning, you live in the now, not just because you're still recovering and gathering strength, but because the now is all there is, filling all your senses.

And then you start seeing your life not just in days, but weeks, too. You get a little stronger, you start making plans with friends for a week or two down the road, knowing that you can. Knowing that your body will support you instead of sabotage you. And every day is still a gift, a little less intensely so, because life has started coming back, everything you didn't do for so long because you couldn't now gets on your radar and you start dealing with the minutia of your life and even that is joyful. And still, almost every day, you'll marvel at your ability, at still being alive, at paying your bills, at getting your own groceries again and although the world no longer stops quite so often while you reel with the realization that you are still here, it is never far away.

More time passes and one day, you find yourself being needed, not just for a few hours or a day or two, but for months and there, within this helping of another, lies another miracle. The miracle that you can. That for the first time in years, you're helping someone else, is useful, able - able to do so much more than you knew you could and when you have time to stop and think about it, you are overwhelmed all over again, remembering too clearly when you couldn't and when you thought you never would again.

And then a few years down the road, it's barely April and you've started your Christmas list, you found yourself a job and your life is almost normal. You're moving fast, the weeks and months are whizzing by and you have plans. Not just plans for later in the week or the end of the month, you have plans for the summer, there’s that Christmas list and you've even vaguely considered dating again. And it is terrifying.

Before, if it went bad again, it was if not exactly OK, then in a very real sense OK, because you had held your sister’s children, watched other kids you love grow into fine young adults, seen the world, really seen it, seen the beauty and the mystery. But now, now that you have plans, open-ended plans, it’s no longer OK, because you have things to do, you’ve invested in the future, have things you wish for.

When you were living in the moment, each moment was enough, was all that mattered, but now that you live not just now, but also many moments from now, the little voice that chants “what if I fall off the cliff again tomorrow, what if... what if... what if...” and the thought of losing this life you’ve built again, losing possibility, is overwhelming, but in the other way. The way that comes with a panicked need to hoard what's become precious to you, hanging on tight to everything, forgetting that life is only life if you let go.

And you try to remember when you got your life back, how you promised yourself to not live in fear again, but it was easier then, when the world was so new, your life was so new. Now, in the present, you can still connect to the miracle, the tears of joy still come if you think about it, think about your second chance, but somehow, you’ve become so normal again that you find you’ve made assumptions about the future. And you have no idea how to trust that future when it’s only been four years since you thought you didn’t have one.

And then, after a week of flailing about, you get your arse kicked by a good friend or two, enough to rattle your brain out of the panic and you hear another little voice. A new voice. One that says “what if you don’t fall off the cliff? What if the meds give you decades?”.

I’m still reeling at the thought.



Friday, April 24, 2009

Random April

To start us off, what part of spring are you (via Barbara from Nova Scotia)?

You Are Baseball Games

You like old fashioned things. You're one of those people who values tradition.

You enjoy a slow pace of life. You believe that life is all about enjoying every moment.

You love the changing of the seasons, and you look forward to what each season brings.

You are smart and a bit obsessive. You become very immersed in your interests.


(enjoy a slow pace of life? Me?? Although that thing about being a bit obsessive may be sort of true...)

LynnM sent me hilarious tourist complaints and a comparison of warriors in two cultures.

Who knew a garden hose could sound melodic?

From Trevor, the absolutely latest from Japan and I've got no comment whatsoever. And an article refuting the innocence of "little old ladies" (people keep forgetting they've had decades to plot).

Trevor also sent me a link to two talking cats - really talking, although it doesn't come with a translation. Lying behind me on the bed, Mojo could not have cared less. However, when I clicked on a link out on the right side to another talking cat named Bunsy and played it on full screen, she was absolutely transfixed. Unfortunately, I can't find those videos again, so I have to find other ways of messing with my cat’s mind.

Late addition: A-HA! Found it. Turns out the cat's name was Burnsy.

By now, I'm sure pretty much everyone has seen the dancing-in-a-railway-station videos and here's another one, this time from Holland, I think. Makes me smile every time, however, it's the second video that makes me laugh. Little Red Riding Hood like you've never seen her before (I'm especially fond of Grandma nutrition facts).

A little more time intensive, but well worth it if you've had the kind of week that's made better by watching explosions, but not the usual kind. Sent to me by DavidG, who also showed me what may be the best commercial series I've ever seen. Sit back, watch and enjoy!

Thursday, April 23, 2009

To Be or Not To Be

This week on HealthCentral, it's about inspiration, dreams and rebuilding your life:

"I don't have a choice of whether or not I have Parkinson's: I have it. But other than that, I have a thousand choices, and I can't let myself be sunk by the weight of that one non-choice..."
- Michael J. Fox, Entertainment Weekly, April 17, 2009"

The rest (actually involving my words as well, is here.

Also Spring Dreams.

Monday, April 20, 2009

Joy to the World

This weekend, it was warm. Not just not freezing, but actual warmth. Going out into the sunshine, I meandered through the neighborhood and saw buds, tiny leaves working their way out, leaving a delicate green tinge on branches that have been dead for months. Life is coming back.

In a raised flower bed that is someone's downtown garden, the tree is still dormant, but below, dotting the flat, grey earth are tiny blue flowers. I don't know what kind they are, but it doesn't matter - they are joy.

I turn a corner and the delicate scent of manure comes toward me on the breeze - somewhere, someone has been gardening and after six months of smelling nothing but cold and snow and exhaust, this smells like green to come, smells of promise. Inside of me, something tight is starting to let go.

I pass a tulip and then another one, bright yellow and red bouncing off my retina, my eyes unused to such exuberance after half a year of monochrome and I drink it in, can feel the colour entering my body, suffusing every part of me, bringing hope.

The vendors are there for the Sunday antique market, bringing treasures and trash and a girl playing the guitar sings Joy to the World. I drop a toonie in the guitar case in among the other changes sparkling in the sun, we exchange smiles of thanks and carrying the song with me, I hum my way down the street.

In the park, on a field of what used to be white, but what is now grass beginning to look green, the dogs are playing, chasing balls, chasing each other. I sit under my tree, the place I sit almost every afternoon in the summer, even if it is just for half an hour, to connect to the earth, connect to something larger than myself, to find the peace inside I find only here and there it is again. Small, a trickle only, but I can feel it seeping into me the way of thirsty plant drinks water. A dog sees me, comes bounding towards me, chewing its rubber ball and drooling on my legs, inviting play and I laugh.

I walk home again, my heart swelling, my soul turning outward, I am opening up and I realized that somewhere, deep inside, I had thought winter would never end. And now I know it has and soon, the world will thrum with life again.

Friday, April 17, 2009

State of Bliss

I read this post a while back and have been keeping it in my back pocket for pondering. It's about the Celtic legend of Ceridwen’s magic potion granting knowledge and wisdom and the punishment of Gwion for accidentally imbibing it. I like the musings about knowledge and wisdom and why it is apparently a bad thing, just like the story of the Garden of Eden And aside from a theological conundrum - which I won't get into now, as I'm trying to for once keep this short due to elbow issues - it got me thinking about the early days of Christianity. About masses being in Latin, about requiring a priest as a conduit between the people and God and I started wondering about all these barriers that were erected to keep the congregation unknowing. Aside from this being an excellent method of social control, was it to preserve the "innocence" of people? And why is innocence so praised? Which naturally led me to the good old saying about ignorance being bliss. With which I disagree wholeheartedly.

To me, knowledge is bliss. Not knowing is about the furthest thing from bliss I can imagine, which makes me a complete pain in the arse when I'm at the dentist or having a medical procedure of some sort, due to the questions about "what are you doing?", "why is that thing making that noise?", "what's that for?" and there are times when I probably could ask "why does your face look like that?" at the end of it all, but it seems impolite to bring attention to the twitching. Knowing what's going on gives you a sense of control in a situation that is inherently uncontrollable - sure, it's an illusion of control, but still, being an active participant even by knowing what comes next takes you from being a case, a piece of meat to a person who is allowing the dentist (or whoever) to do unpleasant things. Aside from what it does for me psychologically, I find that it's a good thing for medical professionals to be aware that I'm there.

And then there's the fact that knowledge for the sake of knowledge is just plain awesome. I've been known to say that I never grew out of the why stage that normally hits kids fairly young, but it thrills me to no end to know that the reason rat poison works so very well is because rats can't vomit. Neither can horses, for that matter, although hopefully, they have less opportunity to eat rat poison. And that's just the beginning of the weird facts I find fascinating.

Knowing makes me happy. Whether it has led to wisdom or ever will lead to wisdom remains to be seen, but to me, knowledge is bliss, not ignorance. And it makes me wonder why such value is placed on ignorance and innocence (and I don't mean the sexual kind).

I could go on (and on) about this, but the elbow wants me to stop. So instead, I'm turning it over to you. What say you - knowing or not?

Wednesday, April 15, 2009

The Slow Road

Remember this injury? That turned permanent? It even has a name now – thought of Priscilla, Celia or Brunhilde, but instead, it’s apparently a variant of Golfer’s Elbow and all without even playing that pointless game. It got aggravated. In fact, it got downright testy and has gotten progressively worse on a weekly basis for quite a while now to the point where I had to take most of last week off to sit fairly still in the hopes of preventing something major. Of course, by the time I sat still, it was too late and it turned into one of those cascading injury things, where one thing leads to another and before you know it, your entire body is fucked.

Yes, this again. I'm running out of ways of describing it in an interesting/amusing manner. Am I the only one bored with the subject? (don’t answer that!)

Anyway! Just before the long weekend hit, I decided to drag out the big guns and had a chat to my doctor about a steroid shot. Which brings me (finally) to my point. Assuming I even have a point, which after a week of very big painkillers and a lovely long weekend of doing not much may be hard to attain. As my doctor was helping me get out of my sweater so she could jab my shoulder and I was helping the process along the way I normally do that particular movement, she remarked that perhaps if I moved slower, I wouldn't hurt as much. She's mentioned this before and I've waved her off before. Because although she may be right, I don't have time to move that slowly. Of course, it could be argued that I don't have time not to move that slowly, but I'm ignoring that for now.

My snorting dismissal of this idea of moving more slowly made me think about time and how I use it.. I'm not going to bore you with the details, but the highlights are that I spend at least four hours of the day directly catering to my disability and/or pain levels. And that's not taking into consideration that other things I do, like e.g., making a cup of tea, that takes about double the time it does for someone not me and then there are the regular things, like household chores, buying groceries, eating, volunteering and…. My friend Andrew once called me the busiest unemployed person he's ever met and now I've added another 4-5 hours of work to my day - naturally without taking anything out - and perhaps it's not surprising that my body is having trouble keeping up.

But if I'm honest with myself - and there's no point to things if you you're not (as my father used to say, it’s OK to lie to yourself, as long as you know you’re lying to yourself) - it's not just about all the things on The List. I've always moved fast and I still move fast (or as fast as I can). Because moving slowly would bore me senseless. I have attendants who can spend 15 minutes washing two pots, a cutting board and a few pieces of cutlery and by the time they're done, I want to scream and tear out my hair because if I were doing it, it’d be done faster. But I can't do it, so I wait and grit my teeth and think about the time running out like sands through the hourglass… wait. We weren't talking about soaps. We were talking about full days, moving fast and how that contributes to injuries.

At this point, I'm on my third rewrite of this post. I couldn't figure out what my point was, until I mentioned the thing about being honest with yourself, because I hadn't been about this particular something. Which was how my life, activity level and even the way I move contribute to my pain levels and increases the chance of injury. Not something I'm thrilled to delve into because that means I have to take a look at my limitations. Aside from admitting I have some, if I actually tried to work within them, the inevitable conclusion is that I ought to take a number of things out of my day. And naturally, they’re all essential, right?

That's the lightbulb moment for the day. Took me a really long time to get there and I’m deeply uncomfortable with admitting it, but this is one of the blessings of having a blog. Not only can you work through your issues without trekking to a therapist’s office, but when you do so publicly, it creates a bit of pressure to actually do something about any realization you may have had.

I'll keep you posted. But for now, I need an ice pack and some codeine.


Thursday, April 09, 2009

Better Living Through Chemistry

My new HealthCentral post ponders drugs and why we take them:

"I used to start the day with crying in the shower, hiding my face under the spray, silent tears of pain mixing with the water. Once the day got going, I'd build up the barricades again and distance myself from the pain, but in those first moments after waking, my soul was too raw and tender to take the assault. Every morning, I felt the full impact of my illness, the pain too much to bear, the despair of facing yet another day like this overwhelming."

The rest is here.

Wednesday, April 08, 2009

Language Matters

On Monday, Colleen called me on using the term Nazi for something unrelated to the Third Reich and its horrors and rightly so. I should know better. People like me were the first to be gassed by the Nazis back when they were still doing it with exhaust fumes because it was easy to persuade others that people with disabilities weren’t really human and would contaminate the Aryan race. I should know better because my parents were children during the German occupation of Denmark and I grew up hearing stories about that. Not just from my parents, but also from the annual commemoration of the occupation and liberation, which included documentaries about the camps. Which was the reason Schindler's List didn't affect me the same way it seemed to have affected the rest of North America. I had watched documentaries about the reality and once you've seen those images, they don't leave your mind and dramatizations lose their effectiveness. But my point is not about movies. My point is that manners are about civility and kindness and in making a point about manners, I showed really bad ones.

Language matters. The words we choose to describe concepts and events matter. Using Nazi in the way I used it on Monday trivialized what the Nazis were. Not that I necessarily believe certain words should be rigidly taboo - I think there’s a time and place for using emotionally loaded terms - but in the context of a discussion of family dinners, it was lazy to not take the time to find a better description.

And I find it particularly ironic that I was that lazy (yes, I'll stop the self-flagellation in a moment), because I have my own version of a word that feels like sandpaper on burned skin every time I hear it. The disability movement has worked very hard to create awareness about appropriate terms for disability and dissuade disability-related terms used in derogatory ways in general conversation and for years, I barely heard this word at all. But these days, it's back in fashion and not just among the young - I hear it all the time, even from people my own age. And the word? Retarded. As in stupid, doing something boneheaded, expressing dislike of someone's actions, etc., usually with an inflection of irritation, disgust or amused condescension. And every time I hear that word used in that context, I wince.

I had a debate about it with someone who said that the work could also be used to denote delay, moving slowly and the like and that's true. Except when saying "that's retarded!" with aforementioned inflection, it's pretty clear that most people use it in the other manner. Besides, how often do we use the word retard to describe delay or suggest something is impeded? Not often.

It reminds me of a post I once did in response to Tiger Woods calling himself a spaz and me having a decidedly negative opinion about his choice of words. However, my entire comment box, the majority of whom did not have a disability, thought I was being ridiculous for having issues with the word spaz used in this way. And it's something I've thought about often since, because you know what? I don't care if other people think I am ridiculous or oversensitive, because with words like that, it's not the majority that gets to decide. If that were the case, we'd still be using the N-word, wouldn't we? What matters is that using spaz or retarded or the N-word may be painful to the people who are spazzes, retarded or… I can't even say it, which reflects how effective the civil rights movement has been in changing the way we use language. What matters is whether you would say this word if you were speaking to someone who had Down’s Syndrome or someone who’s the parent of a child with Cerebral Palsy, someone who was Jewish or black. Etc.

And if you wouldn't, then why use it at all? That should be the litmus test, shouldn't it?

Language matters.


p.s. I have a friend who's looking for a knitter to design a fairly simple scarf with two words in braille for a person badly in need of comfort. Possibly knit it, too, but she may have access to knitters already. No payment but copyright to the pattern, permission to tell the story behind it (with the people involved being anonymous, of course), general glory and knowing that you did a good thing. And a framed print as thank you. If you're interested, please e-mail me at landers5ATgmailDOTcom.




Monday, April 06, 2009

Family Dinners

Along with a good portion of other people in the Internet, I read Dooce and sometime last year, when Heather started doing momversations with other prominent mommy bloggers, I started watching that, too. They're smart, funny women with interesting takes on issues of parenting and despite not being a parent, not surprisingly, I have opinions anyway. The older I get, the more I'm aware of how I was parented has shaped some of the best parts of me and I am lucky enough to have been elected co-parent of two amazing boys, which has made me think even more about the ways we parent. And I find it pretty funny that I feel compelled to justify being about to opine about parenting, but it's a bit of a sticky issue, isn't it? For people who don't have children to have an opinion about raising them. However! This blog is about me having opinions, so here goes.

One of the recent momversations was about family dinners, about having them, not having them, why we think they’re important or not and I'd wait here while you went to watch it, but for some reason it stops after the first 30 seconds, so I'll recap really briefly. Some people thought family dinners were important , not just because it allows a family to spend time together, but also to discuss life, debate, etc. One of the women weighing in hadn’t come from a tradition of the family gathering around the table for dinner and stayed in touch with her daughter in other ways, among them text messages, figuring that this is the way her daughter communicates, so she’d communicate with her in a way in which her child was comfortable.

I'll admit my bias up front. I grew up in the tradition of everybody meeting around a table for dinner, nobody starting until my mother sat down and indicated we could begin and everybody sticking around until the last person was finished, at which point we’d thank my mother for the meal and helped clear the table. Dinner was where we talked about our day, it was where all the important things were discussed - many of my favourite memories of growing up involve the table (by the way, my mother kept it, after all), a meal and our family together. And it was where my sister and I learned the debate game, our parents encouraging us to take part in discussions, expecting us to be prepared to back up our opinions and over time, we learned the joy of juggling ideas in the air between us over dinner.

Times have changed and it is often harder now to gather the family around a meal, what with shift work and second jobs, afterschool activities, recalcitrant teenagers and what have you. However, I believe that whenever possible, gathering together once a day does a number of things that are important . It builds family bonds, it teaches children about etiquette - yes, the manners Nazi strikes again, but having the ability to conduct oneself properly around a meal is important when you grow up and may, if not have dinner with the Queen, then perhaps your boss or a person whose pants you’d like to get into (I once knew somebody who never called a girl back for a second date because she slurped her coffee. And I understand that). And it develops the ability to have an intelligent conversation, also a really handy tool when you grow up. Family dinners are an important socializing tool and therefore an important parenting tool.

Your thoughts?

BBut before I turn the soapbox over to you, thank you so much to everyone who left a comment on the Birthday Goddess post, helping to celebrate my mother properly. 47 comments, some from people who never commented before and I'm pretty jazzed about that. I asked mor to select a number between 1 and 45, she picked 35 (being born in 1935) and - drumroll, please! - the winner is Fridawrites. Congratulations, Frida! E-mail me at landers5ATgmailDOTcom with your choice of photo and address and I'll get on it immediately, if not sooner.


Friday, April 03, 2009

Look! Something Shiny!


This is to distract you from the absence of my regular verbosity. Two deadlines today, plus a meeting requiring major prep and... look! The shiny shininess! Shining upon what I hope are shiny, happy people about to have a shiny weekend. Words to return Monday.

The Birthday Goddess contest is still open - enter by Sunday, 6pm. Less than 40 comments from the goal!

Wednesday, April 01, 2009

Happy Birthday Mor!


I could write pages about the awesome woman who is my mother, but this photo sort of says it all. Warm, wise, strong and with a highly developed sense of the ridiculous, she is my rock and my inspiration.

I have this notion that it could be fun for her to get as many birthday wishes as her age - 74 today - and to that end, I'm having a contest. Leave a comment for the Birthday Goddess, (who goes by the name of Bea) anytime between now and Sunday evening at 6pm. Winner to be selected randomly by aforementioned Birthday Goddess, announced on Monday and gets an 8x10 print of any photo on my Flickr page.