Monday, 20 October 2014

Things in the firmament is Things like non-Things

Right. So, I didn't take a photo as perhaps I should have. But then, the photo might have been even more cheeezy than the moment itself.

It was just a rainbow, a little more special than usual because I haven't seen a fully arched one for a long time, usually no more than fragments shooting off to whatever horizon. This one was akin to something from a storybook, except the sky was dark grey rather than blue, and there were no fluffy clouds on either side. Sitting here at my desk, typing up words of encouragement to a newly-diagnosed woman at my brain tumour support group, but feeling a bit glum and hopeless myself, and very angry that it was dark, rainy, cold, damp, yuck in the middle of the afternoon, when suddenly: it appeared. I got really excited. I lifted my fingers off the word "hope" and stared. Seeing in things in the sky that are not police helicopters tend to fill me with a peaceful hippie glee, and I have to call out to whoever is nearby to point it out, to share my excitement.
Many years ago in Calgary, for example, I was getting home from the bar at about 4am. Not particularly intoxicated - that is, not so much that what I saw was not real. It was winter, and the sky lit up with aurora borealis as I approached the house. I had seen the auroras in Calgary on a number of occasions before that, but because the city is not far north at all, sightings are a rare occurrence and are nowhere near as spectacular as those in the arctic. But that night whisps of white and blue and green, maybe the tiniest bit purple, materialised, and I ran to the front door as fast as possible lest they were to flicker away before I could wake my parents. I made no effort to enter quietly. I got my mother out of bed and brought her outside where I pointed upwards with joy and awe...and she squinted up at the lights, nonplussed, then looked me up and down. "Frances, you stink,"  she said and went back into the house. I remained delighted and stared and stared until they de-materialised.

Today's rainbow lasted no more than five minutes, and the force of it really set off sparks for me, especially considering what I was typing at the moment. It actually added force and greater sincerity to what I was writing, and reminded me that the words of comfort I offer to fellow brain-rottees apply to me as well. My cynicism and anger and hatred and despair run from my skull down to my heels and back up again, but there's still some padding there (especially around my belly) that contains hope and other such nonsense. If I didn't still have hope I wouldn't have the capacity to continue being such a snarly bitch.

Would YOU eat dark matter after your workout?
So there it is. Events in the sky that are no more than reflections and refractions of light in the earth's atmosphere still rouse absolute awe in me because, well, 1) they look pretty cool, and 2) they terrify me. In the nicest possible way they remind me of the unfathomable size of the universe, mostly dark matter, that is more or less constantly attacking us. I'm going to be a bit sloppy here and let this post drift off into, um, the firmament, because discussing it is an intensely serious business that I don't wish to undertake at the moment. My purpose was only to express, briefly, the auspicious timing of a rainbow that made my eyes glaze over for a moment, and that I truly hope made my wishes more sincere to the woman (and group) I was writing to at that moment. A good omen. I hope.

I leave you with this brainy quote from pop-science journal, Discover:

"There is something marvelous in the fact that we barely understand what most of the cells in our brains are doing. Beginning in the 1930s, astronomers realized that all the things they could see through their telescopes—the stars, the galaxies, the nebulas—make up just a small fraction of the total mass of the universe. The rest, known as dark matter, still defies their best attempts at explanation. Between our ears, it turns out, each of us carries a personal supply of dark matter as well."

Thursday, 2 October 2014

Actually, it's all about Sandra Bullock

O the tedium of remembering all the grey ribbon months.
Another Brain Tumour Awareness Month is upon us. 
There's the UK one, which is observed in March. And in the US, it happens in May.

But in Canada, it's OCTOBER, the best of the months, the most glorious, because it is a month that culminates in All Soul's Night, which then slides into November for All Souls' Day, the latter represented in Mexico by edible bread and sweets in lovely skull shapes. October is clearly the most suitable month to commemorate brain rot because it's all about glowing skeletons and dancing bones and fluorescent colours and cobwebs in heads: stuff that I like because it makes me think of living. That's what it's about: a celebration of life by making Death into something merry and less scary. 

In my post below I begrudge these ideas, the casual, abstract acceptance of the memento mori, the invented symbols of the loss of life and breath, when the horror of what that actually means is actually not acceptable at all. It's indescribable, it's sick, it's painful. And the reminder of the reminders of dying got well under my skin that day. There are times when the joys of day-glo pink just won't pierce through all the infinitely dense dark matter you're facing, or that you see others facing. And it's not possible to do anything about that except ride it through, regain a certain amount of control over your life and destiny either by ending it all yourself, or taking comfort in your (version of) God and the afterlife to come, or by weeping until your guts feel like rocks, and then getting on with things again because the rocks are, frankly, too heavy, and you might as well throw them out until it's time to fill up again (and there will always be time to fill up with more. Opportunities to cry are more than plentiful). As for the humour approach? Sure, that's good too. But it's not always funny: as we know, clowns tend to be driven by sadness.

However, on many days I do embrace the abstractions, the moss-covered stone skulls in graveyards, the chapels built from human bones, the skull-shaped candy and bread, Halloween, all those reminders that these symbols and rituals are not so much symbols of the end to come, but of the life that still occurs in the meantime. What is that cluster of remembrance days for those we've lost all about? It's comfort for the living. The dead are gone and that's it. So what. Everyone who lights a candle or dances around in their bones is actually celebrating life - music, ice cream, all that.

The final week of the month (26 October - 1 November) happens to be the week chosen by the IBTA as International Brain Tumour Awareness Week, so at least that bit of internationalism ostensibly ties together all the discrepancies between awareness months. (Ultimately it must be a good thing if there are so many opportunities to, um, celebrate brain problems? Or is it just confusing?). There is something rather auspicious about the IBTA having chosen that particular week for a world-wide brain rot awareness week...

For those of us who actually have growths in our heads, we're always pretty aware. The purpose of these awareness months (and all other months dedicated to the numerous unjust and incurable diseases to which the human body can succumb), is to try to make healthy people care. I've noticed wearing ribbons does piss-all because no one ever asks what they're for anymore (I believe I've pointed this out before, earlier in this blog's history). And going around with a ribbon around your whole head, as I demonstrate in the photo above, is hardly going to get a response - at least in London - where the most you would get out of people is a crinkled nose, aversion of gaze, and turning away of head, as if nothing untoward had strayed into their busy, respectable, middle class stupid existence. Big fat shrug. But it is worth wearing them anyway, because you'll always know that someone in your life still has/had problems, and the ribbon itself joins the ranks of the other symbols of imminent death, reminding you that every minute of your life matters. Is this an utterly cliché statment to employ? So fucking what. All our lives are caricatures of all our lives. So you can take it or leave it. Because today I'm feeling the absolutely hilarious absurdity of Bullock's situation in Gravity. On another day I might be sad and slammed with the profundity of that film's (or my) situation, but not today. Because it is the second day of my favourite month, and I'm happy enough to write this rather ludicrous post.

Friday, 29 August 2014

And then what happened? I didn't die.

With meds up more nausea more exhaustion more random blehhh and flavours of aural or certainly postictal effects that can really disable your life as if it wasn't disabling enough to have the electric zoom surge problem caused by the invisible tyrant burrowed away behind the stupid spiders of blood vessels in the brain in the first place. I was deemed stable (phew!) after last scan earlier this month but the woman in next cubicle during my pre-scan IV hook-up had just been whipped in the face with the news of a need for full body scanscanscan because her cancer (which was elsewhere in body, not from brain, blood-brain barrier keeps it in skull, hers a different non-brain cancer) had spread wide and unexpected (tho this was just discovered - interesting but bloody terrifying christ they try to make it sound like it's a good thing) and there she was weeping and Death staring at her and how fun and pretty it is to be surrounded with the colourful memento mori of the Day of the Dead in my flat when Death just looked her in the face and said, Ha, Your Chemo Failed, Lady. I have looked at Death before and Death is not glowskull and candies with flowers and also not some hooded thing with sickle it's an endless swirling cluster of ugly orange stars and no eyes just the sound of a record player winding down to piss all and the darkest sound ever and when it stares at you to say Hi, I'm Here, You're About To Get To Know Me, it's the most disgusting gutpuke throatclench sensation - nevermind the mere abstract concept of, Oh No, Oh Shit, I ... Don't Quite Know What That Means Yet - but really really feeling it and that was the first time I was nearly shaking when I went into the magnet because it was someone else breaking down near me while I knew I'd still be okay for the next little while. Survivor's guilt, anyone? Nauseous, more tired from meds, the effects of tissue scarring (of post-op brain) kicking in at last and rendering previous dosage suddenly completely redundant and taking me back to the huge debilitating electrical storms that I haven't had since 2008 but I'll still be okay. But always thinking of those Equal Opportunities forms you have to fill out during job application processes where I have to tick the box for invisible disability but there's no box for Death it isn't visible at all I know that's cheezy but what do you do when it gets closer, like for that poor weeping woman who I hope can escape it again. It's there on those forms kids: invisible box for Death but not everybody has to tick it yet including me.

Thursday, 22 May 2014

Oh, Hey!

OMG I nearly forgot! Today is St Rita's Feast Day, which I mentioned in an earlier blasphemous post. How auspicious that I decided today to finally post the photo of myself with the little brain-topped pencils that has been part of my cluttered desktop for months. I scroll down my page and what do I find? Yes! A reminder!

St Rita is patron of lost and impossible causes (as many are), and her attributes are as follows:
Forehead wound, Rose, Bees, Grape vine. And a skull, the great memento mori. Like Yorick's. 

I should think that in a practical sense, one may wish to celebrate this day with a glass of wine and a bouquet of roses. Almost (but not quite) in a bourgeois, LIFESTYLE sort of way. I say almost, because I'm a big fan of the wine, and I think roses are not bad. They aren't as nice as daisies, but they smell nice and the petals taste good. So I grow 'em.
St Rita when she thinks about LIFESTYLES.

But have I expressed my feelings about LIFESTYLES? They make me sick. I have a life, I have style, but I don't have a LIFESTYLE. LIFESTYLES are for wankers who sit in their purchased LIFESTYLE gardens with nice little heating lamps and expensive specially-woven outdoor cushions and impeccably delicate foot-high stemmed wine glasses and plates of lamb drizzled with some sort of reduction or another, and chitchat about how they personally sacked some low-level nobody at the office for photocopying the wrong page earlier that day. That's what my neighbours do in their LIFESTYLE IN A BOX garden.

So let's reformulate this. To honour St Rita, tear some roses from your neighbours' garden, grab a box of wine (preferably this one, if you can), and shit in your neighbours' honey (as an acquaintance of mine once did. Ahem). But perhaps leave out the head wound. Or draw one on if you like. A good smear of red lipstick will do.

Thinking what to write next...

...and it will probably be a discussion of Giddeon Burrow's Brain Tumours: Living Low Grade, which came out a couple of months ago and which I immediately purchased directly from his website (why buy from Amazon when you've got the option to support small publishers), but I just haven't got around to writing about it with the care it deserves. It surprised me with the accuracy of its insights and its intimate knowledge of the alienation that is specific to those of us who live, basically, from scan to scan, always uncertain and in constant limbo about what direction a slow-grower might take, i.e. malignancy lurks at every turn. I suppose that in the meantime I will say that I highly recommend it to anybody who knows anybody with a low grade glioma. Kinda explains a few things very lucidly. It's a super quick, easy, and meaningful read.
Giddeon also has a blog, although I admit I have not spent much time perusing it, just for lack of time.

Wednesday, 12 March 2014

Growing Selfies

So, a couple of years ago I announced that my activity for March of the Brain Tumours would be to post ridiculous photos of myself wearing external variations of my tumour in its approximate location. However, the photos were generally a nightmare and I didn't bother: I was pale and had big bags under my eyes, and instead of putting off my little personal photo shoot for another day, I stubbornly went ahead with it anyway. Photos that were supposed to be funny became less so because they demonstrated what was clearly a lack of vitamins and sleep - not exactly the picture of health I wanted to project in the name of ostensible confidence and strength in the face of the thing that will eventually kill me.

So, I decided at the time to just stick with the one that I found particularly glamourous, the one with the fancy red and be-pearled fascinator that's somewhere not too far back on this blog. Vanity is thy my me name, etc. (This was, of course, a few months before the revelation that it need to be cut out again, but whatever).

But let's revisit and expose those rejectamenta. I wish to finally make public some of those fine specimens, because there's nothing like laughter, bitter as it may be, to pretend that there's nothing going on. Let us begin with this lovely little pic featuring the tumour as an egg-shaped knitted thing my Aunt bestowed on me. Let's not mention what's going on with my hair and face, yeah? Just focus on the bird and the beautiful angle at which it is perched.

Yes. And then another birdie (felt bird by Lieutske Visser), who I met at the lovely Dandy Lion Market a few years ago. Now we can look at my hair. Note the subtle styling that complements the frilly tail of the bird. Quite clever of me, I thought. 

And let us not forget these stunners. I ate a whole packet of these during the afternoon when I was pissing about with the camera. In retrospect, it might be that this sort of gluttony explains what was really going on. Aww, sad face.

Monday, 3 March 2014

it's like . . .

Some days it's like, well, probably the entirety of Camilla d'Errico's Tanpopo, whether it's the text or the illustration or the combination of both. Ups and downs but mostly suspension.

it's like . . .

Untitled, 1969

Some days it's more or less like a late period Rothko. Which means many things, really. A furious, beautiful black on grey that feels like it's screaming by but standing dead still at the same time.

Saturday, 1 March 2014


It's Brain Tumour Awareness Month again, everybody!

But more importantly, in another few days that most fabulous season of Christian masochism, Lent, shall also commence. I have decided that the ideal thing to give up for those 40 days would be my tumour, seeing as I harp on about it so much. If I were to resist it, I'd have nothing else to talk about, really, and we would all be delighted by my blank and silent sense of happiness in my dedication to God. 

Unfortunately for all of us, I am not the Catholic I was raised to be, so there seems little point in sacrificing the object of my obsession and the opportunities it provides for groaning and moaning and emotionally blackmailing anyone who takes the time to listen. Therefore, let it be known that for the season known as Lent, I will not give up my tumour, or any pleasure I take in grumbling about it, but I shall nevertheless out-Catholic the Catholics in self-flagellation. I shall moan, I shall groan, I shall take on the holy sufferings of Christ on his donkey and his tree, and, after a brief wrestling match, the Crown of Thorns will be MINE. I won't be crucified, but I'll get that Crown.

Or in other words, I'm actually not giving anything up for Lent. Why should I? (Patti Smith, let us consult thee). I'm hoping to make the most of the month being Aware, whether that means paying extra attention to myself, or paying attention to other people, or to wider campaigns, or just generally thinking things through. Which things? Any things. Et cetera. I've spent the last few months being scared again. I'd like to shake that off. Or talk about how I can't shake it off.

Very well. Now, Let us pray. Not to any figures directly involved in the Easter processes, but to someone from the strange hagiographic cult, the Christian celebrity world that, I feel, is a particularly interesting bit of ooze in the holy bandages. I'm fascinated by it. Let us pray to she who had a bleeding hole in her head for fifteen years. St Rita, patron saint of lost and impossible causes, sickness, wounds, and a few other things not applicable to me: Dear St Rita, please send those white bees to take my tumour. Amen. And on your feast day in May, I'll be pretty grateful, and I'll make you some rose petal jam from the rose bush in my garden. I've just replanted it (no - no injury from the thorns, Praise the Lord), so I think it's going to do very well this year.

Brain Tumour Awareness Month! Brain Tumour Awareness Month! Brain Tumour Awareness Month!