Transition Girl

Why transition girl?... Best answered by a quote from the Iliad....."The soul was not made to dwell in a thing; and when forced to it, there is no part of that soul but suffers violence."

Sunday, January 18, 2015

the motherload

It's been a while since my last confession. The truth is I've been floating in the sea of melancholy that comes with facing several weeks of uncertainty while my latest game of health-related Russian roulette is being played with my most malevolent mistress, the Universe.

Those who know me well know my level of resilience has been built up over many years of facing life-threatening bullets, trigger pulled time and time again, only to breathe a huge sigh of relief when the gun is fired and I survive the latest wayward shot. The time in-between each game seems to be getting shorter; I barely have time to relax and something new lurches my way. I sometimes wonder if this is the Universe's way of inspiring me creatively, after all most writers draw from their creative well and draw their best when it is angst-filled. I do not like that my words speak with a stronger voice when they have flowed out from a darker place. It makes me wonder if the pain would stop if I stopped writing. But then I realise that my escape into worlds I design in my mind have been my anchor to remaining calm about the things I have no hope of controlling. As I said at the start, a greater measure of sadness today while I wait for someone to tell me with greater certainty what the gun will be shooting in my direction in 2015.

I am in a better place today than I was five weeks ago. Really. The words that form the rest of this blog are basically the journey I've been travelling over these past weeks, the latest roller coaster ride I found myself forced to take when my body let me down. I am not too far away from reaching the place where my inner strength will hop back on board - the infamous stoic acceptance that shit just happens sometimes beyond anyone's ability to prevent and all that meant was it was time to get on with it - life that is. I can see it down the track. It isn't a mirage. I am close enough that I'll be fine soon enough. Just a little wobbly now from the ride but the feeling will pass.

My latest ride has forced me to face one of my greatest fears.

I have always feared that Alzheimer's would eventually come and take root in my brain. It's always been my number one fear as a writer. Not my work being rejected (as this is part of a normal landscape for any writer and even less of a worry for me because I write predominantly for myself), but rather losing my ability to write. Something altogether different to writer's block - the other great leveller for any writer - where it is always possible to break out of a rut with a little motivation.

A degenerative brain disorder struck me as the obvious choice for a bogeyman because what could possibly be worse than losing one's mind? No experiential memories to draw upon to paint a story picture in words. I could not imagine anything so disastrous a blow for the one constant that has given me so much pleasure and helped to channel my creativity to create worlds in which to escape. My sanctuary. The idea that a disease outside my control could steal such a precious treasure, it would truly be soul-destroying.

It turns out there is at least another worthy candidate for the role of destroyer. (In reality, there are many.) Multiple sclerosis (MS) - an autoimmune disorder affecting the central nervous system - losing my body first and eventually losing my mind as well. I suppose I should not fear it. I could be inspired by the fictional character from West Wing, President Bartlett. He managed a long and fruitful leading of a nation but then I would have to place faith in life imitating art.

I asked myself one question as I woke up well rested on New Year's day (while I thank Yarra City Council for making Edinburgh Gardens an alcohol free zone this year after last year's debacle, I wasn't willing to chance the noisy neighbourhood so had headed out of the city for my non-celebration). I was feeling the early signs of a new "episode". (This is the terms the doctor gave me to describe when the symptoms were playing up.) Is it better to be alone or to be in a relationship that is convenient? I knew the answer to the question long before that moment but I felt it again and the silence of solitude with Thoreau countryside my chosen alternative vista to home and my body beginning to numb. I cut my finger making lunch for the road trip home and did not feel it, only noticed the blood drops accidentally smeared across the chopping board. My heart, my body, my mind, they are not what they are supposed to be. Broken, flawed, cracked. It does not matter how I describe the things that sit in this Universe, in the here and now, I only know that I need to find my strength to fight (again) against Its cruelness.

I was told by my GP on December 15th after an earlier visit to the doctor and a CAT scan that MS was one of a suite of possible diagnoses consistent with my symptoms. When I presented to the doctor in late November saying I could not feel my hands, my legs, my body, except for an aching skull, almost constant, that filled my head with the sound similar to a crackling bowl of Coco Pops, I could not understand why my doctor would then freak out. General practitioners are supposed to be calm. My GP has seen me survive incredible odds - the pancreatic tumour barely 18 months extracted and relegated to the annals of history in hospital waste - perhaps that explained why he would assume a whisper left behind might have become the roar of a fresh tumour. Inoperable brain tumour anyone? This was his initial belief. He had three patients die from pancreatic cancer before he brought his scythe to me, expecting I would be gone in weeks and then I survived 3/100,000 odds. He'd just had two patients with brain tumours in the weeks before my latest visit and then I showed up with the same symptoms.

I don't think he was relieved with what the alternative might be (most GPs know that tumours are not the worst thing that a person can be diagnosed with) when he read out loud what the CAT scan report actually said a couple of weeks into the festive season. I heard him say the words. I could hear the disappointment in his voice. He has seen me through some challenging diagnoses. He knew he would need to take me down another dark path. We need to add another specialist to your extensive posse - someone new - I wish I could offer you some solace for what will be another year of uncertainty for you. A small part of me wished it had been a tumour. I am used to those vermin invading my body. Cut it out, start again. But a degenerative genetic disease? And one I saw in my grandmother and how it ate away at her until there was nothing left? That was a new blow of randomness that made me even number than I already was from the shock.

News that my already shortened life-span (aside: perhaps it is not so odd that one of my goals in life is to survive to retirement age) would now have the added bonus prospect of a deteriorating quality of life in the mix. And of course getting that news during the festive season when most people who can answer the million questions my GP could not answer were taking their summer vacation. Somewhere exotic completely out of reach, I would have to wait four weeks before I would have any improvement in the level of certainty about what the diagnosis would actually be rather than a statement "it could be MS, it could be mini-strokes, it could be a virus...a neurologist will be able to give you some certainty."

There were some answers I didn't want to hear. It's progressive, like your grandmother's disease, you will be in a wheelchair in a year, or two at best. My headache got worse. I'm spending my Christmas thinking about whether I want a duck cane as a gift, whether I will have to move my home to a more disabled friendly layout. I can barely climb the stairs in my current home now. I'm using a food processor to cut my vegetables. I am finding scratches and bruises and cuts on my body from accidents I don't remember feeling at all. I have lost count of the number of aspirin I've taken "just in case" my mind is stroking - better to be cautious my GP tells me, if you're stroking the aspirins will help.

Everyone can't be happy all of the time. This I say to myself in one of my most melancholy moods. Even the happiest folk I've ever known had moments ever so brief of despair. Black dogs, black clouds hanging over us, sometimes the rain washes the cobwebs away. I went through the usual stages of grief with the anger phase a bit longer than usual. The waiting is the hardest part. Not knowing is worse than knowing. Don't let anyone ever tell you otherwise. Because your mind will always take you to the worst possible place until the real picture can be painted for you.

I finally saw the neurologist last Tuesday. He was an optimistic fellow. The specialist managed to rule off the potential diagnosis list the really bad options - mini strokes, progressive MS. Huge sigh of relief. Still on the list - relapsing remitting MS (the lesser of two evils) or some other genetic nerve deterioration auto-immune disorder (of which there are at least 20 possibilities) though he thought that given my current symptoms it would be some time and also low risk that it would lead to paralysis. Hooray for alternatives. He also said that I coincidentally and concurrently have had a very rare form of migraine (I think the stress of thinking about worst case scenarios over the preceding weeks has made it so myself!). He's given me medication to treat the migraine while he runs some more tests to narrow down the diagnosis from the 20+ nerve cell diseases currently on his list. Suffice to say, I am glad to have a less sore head.

I would have liked to have started the year without a new health challenge. New fodder for inspiring my creative writing. Do I have a new year's resolution? Yes. To have the strength to ride yet another roller-coaster without throwing up. Wish me luck.


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