Wednesday, 8 September 2010
I've been avoiding acknowledging its possibility for approximately the last 2 years. It's always been in the back of my mind, well at least for the last 15 or so years, but as I had no symptoms I realy didn't think it was likely. But these holidays, even though the Possum is still waking once a night I've been getting quite a lot of sleep. And sunshine. And exercise (lots of exercise). And yet I still feel tired. Slightly "off".
Part of that, I reasoned, was because I've been enjoying slothing around in between gym sessions. Baking and eating and consuming far too much cheese. And if I felt a little bit crampy, a little bit bloated, then maybe the occasional drinks I've been having will be contributing.
But the tiredness can't really be fobbed off that way. I know I have a massive sleep debt. I know that the Possum means that I don't get to entirely regulate my own sleep cycles, but it's more than that.
Part of it is assuredly my anxiety at the moment, which, as my fingernails can attest, has been rampant. But that's settling down. I am feeling more human. I am laughing a lot more and more easily. I am finding all the good things in my existence instead of pining after the things I can't have, which I have found do not (obviously) contribute to a sense of well-being.
But again, it's more than that.
My grandmother, who I don't mention enough considering her importance in my life, was an enigmatic, energetic, mentally sparkling woman. She was a ferocious competitor in board games and at cards and was not the sort of benevolent granny who "let you win". If you won against her it was a triumph to remember through the ages. Thanks to her no-one I know will play cards against me, having inherited that sharp and canny way of bamboozling opponents. But no win was as sweet as laying down Canasta against Nana. In fact, I can remember her voice clearly, in one phrase that se used to use while playing my Dad (perhaps the only person on the planet I know who is more competitive than me) at Scrabble.
She was a painter and artist. She especially liked painting porcelain and scattered through the family are her gifts of hand painted plates, porcelain dolls and Victorian jewellery boxes and powder boxes. She crocheted and knitted like a demon also, fingers always busy, never one to sit still. She had a ferocious determination to grow begonias and fuschias and battled against the soil that she insisted on growing them in until they flowered.
I still have a tin of her pencils and paint brushes in the top of my wardrobe. It smells slightly of cedar, slightly of cinnamon and completely of a scent that belonged only to her. A scent that recalls sitting in her rocking chair, listening to her berate the Australian cricket team and brand them all cheats and poor sports as her fingers moved with lightning speed, hooking wool through loops that she didn't even look at to create.
To say that I loved her is woefully inadequate. To say that she was my mentor, guardian and the person who understood me more fully than any other on the planet doesn' come close. There is a spark of recognition amongst the race that knows Joseph, that is unable to be fabricated. It's either there or it isn't. And we were definitely of the same race.
Family was the most important thing in her life. Children and babies and adults coming together to celebrate noisily was a faithful part of my childhood. And at everyone of these gatherings she'd be in the centre, with al of us orbiting around her, drawn in by her remarkable gravity and presence. Sitting around the outdoor tables at Christmas, plates groaning with food, Aunty Gail's slice sitting in tupperware waiting and Aunty Sue's cheesecake beckoning. Rum balls in the centre, all the flavours of Christmas that as soon as they spread on my tongue even now recall that pure joy.
Nana always made her own special food for these occasions too, funny salads and boiled potatoes and other good things. Things that, I realise only now, didn't contain wheat. Because Nana had coeliac disease. A disease that seemed more a nuisance than anything else. It meant that she would only occasionally sneak a rumball. Or a piece of cake. Never bread, because 15 years ago there really wasn't the variety of gluten free anything tat there is now. She was pretty good with managing it. I'm not sure when or how she was diagnosed, I never thougt to ask. Even wen she was diagnosed with the lymphoma that is associated with autoimmune diseases it didn't occur to me, being as I was only 18 and didn't really have a clue what any of it meant anyway.
Until she died. Horribly. 3 months later. I couldn't get enough of information about cancer, lymphoma, chemotherapy and treatments. I researched biology and chemistry in my spare time, wanting to know what it meant. Trying to understand. A path that eventually lead to me sitting the GAMSAT exam and entering medical school. A path that caused me to give Bingley a chance and to start a family of my own. A path that lead me to sitting here, in my little house with 3 children, a husband and a whole bunch of letters after my name.
But it was trying to understand her and how we could have somehow staved off her death that was the real motivator. One of those useless magical thinking traps that we all perhaps enter into when faced with things that we just don't want to deal with.
A few years after she died my sister was diagnosed with coeliac disease. And my two Aunts, who stopped making cheesecake and chocolate caramel slice, were diagnosed too. But with only 1 first degree relative, a couple of second degree relatives and no symptoms I never really considered it.
Then my Dad, who has given blood voluntarily over 250 times was rejected because his blood count was a bit off. So he went off to get investigated and words like bowel cancer were thrown into the "have to exclude" mix, so that we were relieved when we found out it was "only" coeliac disease.
And so now I have 2 first degree relatives, 3 second degree relatives and I am symptomatic. I am not ready to be tested though. I love wheat. I love dense Italian bread. I love lighter, crusty French bread. I love baking. I love kneading dough. I adore pasta and noodles. And did you know gluten is in barley and rye? And possibly oats? Or that half of the thickeners, sugars and syrups in any sort of processed food are derived from wheat?
I knew that, but today, in an effort to just see how I go with a low gluten diet I actually considered all the things I can't have. As someone who primarily eats meat, fruit and vegetables (and the cheese foodgroup), it's not such a shock to the system, but almost ALL the convenience foods are out. No quick sandwich for lunch. No cereal for breakfast (unless it's the prohibitively expensive, cardboard flavoured gluten free variety). No muesli bars. No porridge for breakfast. No up and go when I'm too rushed to make a proper breakfast. No biscuits (not that this is a great loss) or cake.
And of course, after 3 days of eating low/no gluten all I want is bread. I want a baguette to eat on its own with butter. I want cake and biscuits even though I don't normally eat it. I want some dense, grainy bread that crunches between my teeth. I even looked at a bag of jubes (even though the last time I bought a bag of lollies was for the Elfling's birthday party) in the Supermarket today.
Denial's a powerful thing, and if this experiment leads me to further testing I guess I will have to unOstrich a little. But right now I can't bear to think of never again being able to have a guilt free bowl of penne with home made pesto. Or being able to roll out my own ravioli.
But every time this week I've thought of it, and considered abandoning it al for denial, I've thought of the grief of losing someone who meant more to me than all the chocolate cake in the world and eat my banana chips instead. Because what I want most out of life is to be like her. To have meant so much, to so many people not through what she did, but because of who she was.