Another note from my sister, in thanks for all of your comments here…
Thank you all for all the love and support; and thank you to my beautiful big sister.
We are at BC Children’s Hospital this week getting further prognoses for Tanner, a measure of the time we have left…
From my sister:
I read and reread the comments to all of my sister’s posts about Tanner. I do follow them but have never made one myself.
I am a strong woman and a mother… I thought I knew what I was capable of, I thought I could beat my demons by pushing my body and spirit to the limit… but I have been brought to my knees, again.
Once upon a time, in an Internet far, far away – which is to say, 6 months ago – I tweeted about Air Canada. I tweeted about them a few times, actually – I tweeted that they’d broken my nephew’s wheelchair, and I tweeted that they were working to replace it, and then I tweeted that they hadn’t, in fact, replaced it and had instead left Tanner stranded, immobile, while his mother and I scrambled frantically to reach someone at Air Canada on the telephone and did anyone out there have a number that didn’t start with 1-800 and end with ‘we’re sorry, ma’am, but you’ll have to call back on Monday’? – and it kind of started what is often colloquially referred to as a shit storm.
I’ve never written about that shit storm. I’ve never written about it because, frankly, by the time it was over I was sick of the whole thing. I was sick of the whole thing during the whole thing, actually: I was sick of what it did to Tanner and my sister; I was sick of how it took hold of us and shook us and demanded that we explain ourselves, dammit; I was sick of how it spilled TV cameras and reporters into the hall outside our room and how it pulled them along behind us on the sidewalk and in the park and on the subway and demanded that they ask, again and again, does this demonstrate the power of Twitter? Does this demonstrate the power that Twitter gives the little guy? I was sick of trying to explain, yes and no; it’s complicated; this is a triumph, and also not a triumph, and could you please leave that little guy alone? Because that little guy is scared and confused by all of the attention and this isn’t helping.
When my sister was very young, she appointed herself my protector. It didn’t matter that she was two years younger: I was a shy, ashmatic child, gangling of limb and totally lacking in physical grace, whereas she was athletic and boisterous and tending toward ferociousness, and those qualities more than made up for our age difference in confrontations with bullies. If somebody teased me, she’d be right there, waving chubby fists and hollering profanities (where she learned them – raised, as she was, in the bosom of a very Catholic family – my parents were never able to figure out) and daring, daring, whoever it was that had the temerity to confront her sister to take on her as well. And there we’d stand, together: me, tall and awkward, blushing and stammering and willing myself to disappear, and her, chubby and gap-toothed, stomping and yelling and demanding our antagonists to BRING IT, and although it was sort of embarrassing to me – having my little sister stick up for me – I was also always grateful, and proud.
I like to think that I’m the sort of person who doesn’t take things for granted. I know how fortunate I am to have the life that I have; I know, too, that the terms and conditions of that life include no guarantees against frustration and sadness and pain and loss. I know, even the most difficult moments, that I have much to be grateful for, that I lead a life that is, for the most part, what the old philosophers might have called choiceworthy. I know that it is choice, largely, that defines my fortune and privilege: I am fortunate enough and privileged enough to be able to choose, to some not insignificant degree, my path and all of its little detours, to choose my pace and my direction, to choose to linger over or to pass by the myriad distractions of life, to gaze into the gloom or to seek out the sunlight. I am lucky, I know this.
It is also a characteristic of this good fortune, this privilege, that I am vulnerable to frustration and sadness (and, possibly, to depression; I’ll reflect upon this further someday) when I am forced to confront my limitations, when I look down this path or the other and see no way around a certain obstacle – some figurative bog or rock or troll-ridden bridge – and have to stop, give up, go a different way. That’s the very definition of privilege, I think – the luxury of getting pissy about being thwarted. Not that those who are less privilege don’t get frustrated at the obstacles that they are forced to confront – it’s just that, I think, the fortunate are more likely to put their hands on their hips and stamp their feet and say that shouldn’t be there, how dare that be there? and collapse to the ground in a resentful huff.
Or something like that.
When all was finally said and done, it wasn’t appearing on CNN in a tutu – nor appearing on CBC in a tutu, or posing in Central Park in a tutu, or watching as a limo slowed down on Fifth Avenue and the passenger leaned out the window and hollered – at me – hey, I saw you on TV in that tutu! – that stood out as the most memorable moment of my week last week. Which, when you think about it, is memorable in itself: I had a week in which I appeared on CNN in a tutu and that particular experience will not be recounted here because, during that particular week, stranger things happened.
Stranger things, like the prayer circle.