At Risk of Being Wrong, Here’s To 2017


I feel like being optimistic about 2017 is foolish, but here I am, doing just that. Looking through my journal the other day, I found exactly the same optimism in my first entry for 2016, and look where that got us.

While 2016 was shitty for a lot of people because of wonderful people who died (I’m still not ready to believe Carrie Fisher is gone), or because of certain election results (there’s the obvious US and UK cock-ups, but the Australian election and its repercussions for Centrelink and Medicare scare me more), but the biggest issue for me was my health.

For most of 2016, I was ill. It wasn’t a physical malady, so even I’m a little reluctant to use the term, but there really is no other description that fits the bill.

In March, my epilepsy took me from a place of optimism and drive, to somewhere dark I hadn’t been since 2012. The ensuing depression was some of the worst I’ve ever dealt with, but this time I was willing to be open with those around me about what it was doing to me and the kind of help I was in desperate need of. I can happily say that has started to pay off over the last few months, and I’m getting the medical help I need to move towards the more even keel that will make the shift into the real world and employment a reality.

Last time it took me 10 months to recover; so far I’m clocking in at 9, but I’m in a better position now than I was then. I’ve not been working full time, but I’ve got a couple of freelance clients, and doing those occasional projects has really boosted my confidence in my own writing and in the idea that I might be able to do this as a side project.

Last time, serendipity delivered me back into a radio gig, but now that I’ve decided I need time away from that industry, where I have spent almost my entire career, that won’t be so easy. I’m working with my neurologist and GP to make sure I’m not going at it too hard, and working with Employment Services Group in Braddon to assess what my skills and strengths are so that I can find a job where I will be a good fit. I’m still in the process of completely re-writing my CV for temp work, and I’m still trying to work out what the hell I’m going to apply for, but the cogs are finally turning and I feel like I’ll get to where I’m going in the next month or two. (With the job market in its current condition, that might be a little over-optimistic, but I think I can do it.)

diary 2017In previous posts, I’ve talked about the symbolic importance the New Year holds for me. I like beginnings, but in the past I’ve often struggled to see them through in my personal life. Resolutions fall over in 24 hours, and my optimism barely lasts the week. So why is this time so different to previous years?

This year, I’m taking the advice of Joe Biden, and I’ve made a plan. It could fall through, but I’ve been slowly integrating it into my life over the last month or so, and it seems to be gradually working. I’m getting things done and creating healthy habits, and I’ve not forgotten my medication in at least three weeks! I’ll write a post about it next week (oh yes, I intend to write here a lot more in 2017).

And resolutions? Sure, I’ve made a few, but I’m going to keep them to myself for now. Hopefully I’ll spend 2017 writing about how I’m achieving them rather than reflecting on how I haven’t come close to achieving them…

Getting me through 2016 was a team effort, so there are many thanks that need to be said. Mum and Dad have been the best parents a girl could ask for, looking after me in their home, keeping a roof over my head in Canberra and supporting me as I’ve taken my first shaky steps back into the real world. My sister Justine has given me a lot of hugs when I need them, and I can’t overstate how wonderful that is. Thanks to my best mate Miranda for always being there for a chat and giving me kindness and well-deserved tough love in relevant measure. My housemate Karina, for being incredibly tolerant of my untidy and lazy ways being amplified by my less than ideal condition, and my constant travelling back and forth over the last few months. BMA’s editor Andrew Nardi has been an absolute saint in terms of my struggles to reach deadlines, and so many of my Canberra-based friends – Nigel, Beth, Ali, Cam, Rhonda, David, Josh, Justyna, Bondy, Chris, Nick, Emma, Gerry, Kath and so many more – have been much loved and appreciated connections back to the life I love to live. My former work colleagues have been incredibly kind during my illness, with special mention to Kirstan, who has been the best co-copywriter I’ve had the pleasure of working with, and a bloody good mate who has inspired me with the goals she keeps on kicking. Dr Kaitlyn Parratt at the RPA epilepsy clinic and Dr Chowdury Beg, my GP at Dubbo Medical and Allied Health Group, have both have been absolutely critical in my long term treatment and recovery. To my extended family: I count my blessings every day that I was born into our mad mob. Finally, a massive expression of love goes out to my Internet Party buddies who have been on the front line of most of my expressions of anguish this year: Alex N, Alex B, Fin, Britt, Tim, Lizzy, Beth and Lauretta.

I know 2017 is going to involve a lot of hard work, personally and politically right around the world, but for the first time in a long time, I not only think I’m ready to do it…

…I’m absolutely going to.

Happy New Year.

Advertisements

What the Storm Left Me

purple_sky_and_lightning-1600x1200
Source: Unknown

Things I did for the first time today:

  1. Handwrote something (albeit in a very stiff version of my handwriting)
  2. Sang in the shower
  3. Threw a toy for my parents’ dog

– A list written on Sunday March 20, 2016. Around 48 hours later, I was bedridden, unable to speak or move.

On Thursday March 10, just before the end of the working day, my brain sent a cloud of misguided electrical impulses through my synapses. It was a big one, but not altogether out of the blue. I hadn’t quite been feeling myself for a while before that, taking a day off a few weeks earlier to stave off pre-seizure symptoms. I’d actually had a small seizure the week before, but the only impact that was going to have on my life was losing my recently acquired learner’s driving licence.

Sure, it wasn’t the nicest way to start a suddenly extra-long weekend, and I hated that I had freaked out some of my colleagues, but it seemed like it would be no big deal in the greater scheme of things. I have had plenty of seizures in the nine years since I was diagnosed, so I know pretty well what it takes to recover: sleep, and lots of it.

That night, I got just that. The twelve or so hours of solid slumber I got should have had me right as rain the next day, but I was still really off. I spent most of the day eating ice cream and trying to write stuff for BMA, but I was still really tired. My speech was still shot and my motor skills came and went, right through the day. I figured it was just a bit of extra lag, but when it continued into the next day, then Sunday, I knew something wasn’t right. The storm hadn’t passed.

My dad arrived in Canberra on the Monday. It was Canberra Day, so I didn’t have to worry about work, but it quickly became clear that heading back to the office in the new week was unlikely, if not impossible. I tired quickly, regularly needing naps to keep myself on something resembling an even keel. I struggled to eat with a knife and fork, and found communication difficult. It felt like my speech wasn’t just getting caught up in my tongue or in my throat, but in some secret cavity in the back of my head, which meant every word made my body shudder with the effort of projecting it out of my mouth. Dad quickly became very good at the “Finish Noni’s Words and Sentences For Her” game. He took me to my GP, then to get blood tests, then to get a CT scan. All of those came back clear.

The Friday after St Patrick’s Day, I had a shower, then headed out to the dining table for breakfast, but it quickly became clear that I wasn’t going to be eating any of it. I had lost all fine motor function. I couldn’t even use a spoon. Naturally, this made me incredibly distressed, which led to another seizure, and I was taken by ambulance to Calvary Hospital. More blood tests, some fluids, some antibiotics, but no answers.

After I was discharged that afternoon, Dad drove me back to Dubbo.

I had an MRI today. It was a really good example of the high stimulus situation I can’t be in right now.

– A note written for this blog on Monday March 21. The MRI machine was so loud that I went in with only a little trouble with speech, but came out barely able to stand, weeping and completely unable to communicate.

Being back home with my parents is a double-edged sword. They can keep an eye on me and are always there for support, taking me to appointments and planning the next move, but with more people comes more stimuli to trigger me back into being helpless and unable to communicate, or walk.

This post has taken me over a week to write, and not just because there is so much to tell. My fine motor skill issues have made typing difficult. The struggle to deal with multiple trains of thought and complex concepts has made writing for any long period of time impossible. My two hospital stays have robbed me of time, sleep and access to writing materials. Emotions are running high, and that doesn’t help either. My current condition is certainly less than conducive to any kind of productive work.

But here we are. It’s written, and I’ve found myself a little victory.

The reason for my prolonged post-seizure symptoms is still a mystery. I’m hoping to get some answers, or at least some new avenues of investigation, from my neurologist when I see them in Sydney on April 5th. Until then, Mum and I are investigating the possibility of speech therapy, and I’m trying to work out how I can ease myself back into the sensory overload that used to be the glorious world I lived in.

All this is progress, but every night I know that all I can do is go to bed, hope, and brace myself for the challenge of tomorrow.

*****

Coincidentally, or ironically, all of my troubles have occurred in March, which is Epilepsy Awareness Month, which culminated in Purple Day on March 26th. If you’d like to make a contribution to an organisation that helps people with the condition, now is the perfect time.

Epilepsy Action Australia and Epilepsy ACT have both been important in my personal journey, however there are plenty of related groups in Australia and around the world that could do with your support.

Epilepsy Action Australia: http://www.epilepsy.org.au/

Epilepsy ACT: http://www.epilepsyact.org.au/

Siren Songs

Image: zen Sutherland.
Image: zen Sutherland.

I live about a block and a half from a fire station. Because we’re on a relatively busy road (not the main drag, but a street many people take to avoid it), we also get a lot of other emergency vehicles going past on the way to events elsewhere in the Inner North.

The sirens are nowhere near constant, but they aren’t entirely irregular either. They don’t wake me up when they go off at night, and they’re almost always still novel, and kind of reassuring, even after living in this house for almost 2 years. I don’t know any people who drive them, and I can’t quite tell which sound belongs to which vehicle from which service (although I am getting better at picking it). Yet strangely, they feel like home now.

Where I am currently living is as close to city living as I have ever been. I’m about to get even closer, moving into a flat closer to the CBD and the main thoroughfare in a matter of weeks.

As time ticks away to my move, I begin to wonder: am I a city person now?

I don’t think I am. I still crave being able to look up and see the stars without the glare of millions of streetlights. I still find comfort in the green paddocks that separate Canberra’s haphazard patchwork of suburbs, and I don’t mind that the middle of town doesn’t seem to have any buildings higher than about ten storeys.

But then I hear the sirens. I hear the rumbling of cars going down the avenue out the front of my house. I see the planes humming as they come into the airport. I hear the fireworks from the lake. I wander the streets and find little nooks and alleyways I hadn’t noticed before. I hear my heels clop on Civic’s tiles; I feel the cobblestones of Manuka’s back streets through the thin soles of my flats. I wander into familiar pubs and don’t see a single face I know beyond the bar staff. I taste new things. I hear new things. I read and talk and find places to hide from those whose opinions I find distasteful. I find new people when I cannot find a place to hide. I have discovered so much here, and I have found so much of myself in its grey and in its colour.

But Canberra is a safe city. Its enclaves and cliques, once infiltrated, are warm and comfortable and safe. I want to foster what I have here, but I don’t want to put down roots.

Not yet.

I want to hear more sirens. I want to hear the way the police come to your aid in other countries, the sound of panic in so many languages. I want to listen to hear if the sound of car wheels on asphalt is different in other climates, on different kinds of road.

When I go Home to visit my family, I notice the silence left by the lack of sirens. I wasn’t in this house when my parents lived on acreage, so I can’t compare that silence with the quiet they still have now they live in town. There, the only real noise is the screaming matches the neighbours engage in on a semi-regular basis, but even that can be blocked out with their fancy new roller shutters. It seems strange to be locked in by an invention made for the city in a town of just over 30,000 people.

The quiet of Home doesn’t help me sleep. I miss the drone of occasional traffic. The silence unnerves me now. It reminds me of how I want to run. It makes me want to run back to my City With The Man-Made Lake.

But I’m here now. So why am I thinking of running again, but to somewhere even grander?

I wonder if a bigger city would lull me into the land of slumber better than where I am now. More trains, more cars, more planes, more sirens. Would it be my lullaby, or the soundtrack to newfound insomnia?

I wonder when I’ll find out. I wonder how long I’ll live with it.

I know I will come back here eventually. Back to where the occasional sirens mark my safety. I will always come back to this city I have come to love.

But right now I want to chase the engine to the fire, so that I can throw my soul in and send it flying with the embers, up into the night.

In Which She Has The Confrontation Before It Happens

Click for source.

 

The following is a letter to an unknown subject, and a conversation that is yet to happen.

*****

Why do you keep doing it? Why do you have to share all our secrets with the internet?

I don’t have a satisfactory answer for him/her/them, but I don’t have a satisfactory mind for fiction at the moment, either. All I have right now are memories. So many of them are ripe for retelling, reworking and reinterpreting. There is nobody else living in my head right now, so I only have my own stories to fall back on.

You don’t have to tell everyone everything. You don’t have to write something every day.

Oh, on the contrary. I’ve let myself lie idle for far too long. I need to practice everyday if I can. I need to experiment with form and the way I think about stories, and oil the cogs so they can start turning more easily, all so I can get back to trying to tell the stories pulled from the lives of other characters, rather than being stuck in my own musings.

I don’t need to publish, certainly. But I do need feedback. I need criticism. I need advice and guidance. I’m not going to get that by keeping it all to myself, or by keeping it to those who think I’m already doing well.

Strangely, it’s a lot less confronting throwing it into the online ether than finding a one-on-one mentor. That said, I probably need one of those more than anything else. Until I find one and the courage to ask them, I will simply continue to practice in the public space. I am sure it will open more doors than it closes.

I don’t want to get caught in truncated, unstructured, rambling memoirs, but that’s where I am and I’m running with it. You work with what you’ve got, and these memories are what I have.

Can’t you write non-fiction about other things? You could write about politics, or famous people, or music! You’ve done it before. Why does it have to be about us/your family/your friends/yourself?

I will, and soon. But those things take time, research, resources, passion, and more. Again, my supplies are limited, but I’m trekking towards solutions for most of them. Baby steps, baby. Itty bitty baby steps.

And anyway, nobody even knows it’s you. Nobody knows how many lies are interwoven with my truth. You gave me these moments and I gave you fair warning that they would visit us again from time to time. And here they are.

I know that some will hurt, but maybe some will heal. Perhaps there will be a new peace now that it’s all been pulled apart and laid out like bike parts on the pavement. Maybe you’ll learn something. Maybe I will.

Don’t worry, baby. Don’t let it cloud your thoughts. Let it darken your opinion of me, if that’s what you want, but don’t fret about the marks on your screen. Nobody is paying attention.

Through it all, remember this: it’s just a phase. It will pass and soon I won’t need you to fuel my musings any more. There’s a box of letters under my bed, and that is where I’ll put you, along with all those other wonders, and once you’re there I promise I’ll never share you with strangers again.

Family Matters

Christmas 2007
Christmas 2007

I’ve just arrived back in Canberra after a ten day holiday with my family: mum, dad and younger sister. Half of that was spent in Dubbo in my parents’ house, the rest with extended family in Milton on the South Coast of New South Wales. To be honest, this has been one of the few times I’ve come back to Canberra wishing I was somewhere else. It’s only been three-and-a-bit hours since I saw them last, but I am already missing my family incredibly.

I’m constantly reminded just how wonderful it is and how lucky I am to have such a close and loving family. The way we all came together to mourn the passing of my grandfather back in April, the unbelievable support they’ve given me with present and future living arrangements, the career advice, the emotional support through humps in my personal life, and so much more: I’m so lucky to have them to call on when I need to.

After 27 years of marriage, my parents are still together, complete with the tendency to still be stupidly cute. They are a pillar of stability in a life that has been full of wobbles, and I’m so grateful that they’ve been there for me, time and time again.

My sister and I have a curious relationship that rocks back and forth like the world’s biggest see-saw. Sometimes she’s all cuddles and cuteness (I am always all about the cuddles); other times she wants to tear my face off (I don’t want to return the favour quite as often, but I have my moments). We live in a peculiar truce-like situation, ready to spark into a spat at a moment’s notice, but I would still do anything for a hug from her. (Except stop asking for them – she gives wonderful hugs, partly because I have to work so hard for them.)

My extended family are spread right along the Eastern states, with my mum’s family, to whom I am particularly close, all living within 8 hours drive. Most of them are in one of two towns in Western NSW. Knowing that an aunt or uncle or cousin could drop by is a nice feeling, and being so far from them most of the year sucks, especially when things are rough at either end. As my Grannie gets older, I realise that it’s also important that I get back to see her more regularly, but as I only get back to Dubbo once every four to six months or so, that’s really tricky. Seeing family is one of the reasons why I want to get my licence this year – it’s near impossible to hurry back on a 10 hour bus trip that only runs on Tuesdays, Thursdays and Saturdays.

One of the other things I’d like to do in the next year or so is live overseas. Friends of mine have gone to London, Thailand, New York and so many other wonderful places across the globe, and I want a piece of that.

But I keep coming back to one thing: how far away do I want to be from my family? Canberra is already a long way away – 5 hours by car, 5 hours and a couple of hundred dollars by plane and bus, and 10 hours by public transport. Do I really want to go any further afield? Can I even bear to be away that long, not knowing when I’ll get the chance to fly back and see them again?

Yes. I’m ready for the adventure of living in another country. But it’s all about baby steps: 7 hours of public transport to Sydney, then a 3 hour flight. I think I could do that. I’m ten hours commute away as it is, after all.

But the fact remains: it will be incredibly hard to be so far away from my family. That said, I’d be cheating myself if I didn’t go. They understand that.

And that’s another reason why I love them so bloody hard.

So every day, I count my blessings. This year, I resolve to call my family more often (I can already hear my mother whooping with joy), and write to them more, and do the best I can to spend more time in their company.

Because I have been blessed with falling into their mad lot, and you never know how long they’re going to be around for.

 

*****

IMAG0365
Inspired by a card from Ask Me A Question: 50 cards to start a conversation, from kikki.K.