You’ve Got Mail, My Dear

Email Logo

I have a lot of emails to read. I’ve committed to the idea that I’m going to read all of them. I’ll reply to those that require it, bookmark websites I’ve sent to myself, transfer the words in my drafts into documents and file them where I can find them later.

I’ve been stuck at my parents’ house in Dubbo for over a month now. My speech is still a mess, and loud noises still make me quite distressed. I’ve been spending all my time playing various iterations of The Sims because at least I can create a decent life in that universe. It’s my own quiet shame, but a remarkably effective coping mechanism, which is probably why I’ve used it every time I’ve been depressed and am trying to rebuild my life.

It doesn’t feel like depression this time, though. It’s frustration at the physical, not the emotional. I feel like I’m locked in my own head because my mouth can’t spit the words out. When I’m silent, it’s not because I have nothing to say, it’s that I literally can’t hold a conversation. I’m sitting at dinner with my family, desperately wanting to add something but knowing that the scratch of cutlery on crockery feels like it’s cracking my eardrums and now the moment has passed so even if I had been able to spit the words out, they’re too late to be counted. Contrary to what you might think, it hasn’t made me a better listener, just a bitterer one.

I spend most of my day in bed. When I try to do something on my laptop, I immediately lose all my focus and find myself on Facebook or Twitter or something else, searching for an indication that it’s going to be okay, but only finding myself in a puddle of muck full of envy and self-loathing that I can’t do any of the things that I love anymore. Gigs, plays, parties, going to the pub or a café with friends: they’re all too much for my sensitive little head. I can barely get through a quiet day of nothing without a meltdown, so doing something that would actually excite my senses just isn’t going to happen.

Ingress_logo_512pxHere’s an email about Ingress. They’ve given me some kind of code to get me back into the game. I haven’t updated the app in months. Maybe I could do that? Let’s see how I feel tomorrow. If I get up before noon and have a good start to the day, maybe I could go for a walk? Heck, maybe I could even go unaccompanied. Probably not. I’ll set a reminder to ask Justine or Dad to come with me, just in case.

Last weekend, my housemate came to visit. We sat on the back deck for at least an hour, my parents’ dog falling over herself at the arrival of a new human. We talked, or at least she did as I stumbled through stammered sentences, and it was the best little while I’ve had since I came back home. Afterwards, I was both invigorated and exhausted.

I’ve suspended my MEAA membership, so there’s an extra $50 or so back in the kitty each month, and I’ve whittled my way from forty emails to thirty. That’s a good start. Sure, most of them were weekly digests from Scum and HerCanberra and other blogs that I try to keep up with, and none of them were things I had to take action on, but it’s a start. Maybe, just maybe, I can do this.

I’m leaving so much undone, either because I can’t physically manage it (calling ActewAGL’s sub-contractor about our gas meter – it’s hard to be authoritative when you can barely get words out) or because I’m terrified of it and what it represents (emailing or writing or chatting to people because I don’t want to confess to them directly just how vulnerable and scared I am; much better to shout it to them all at once in a blog).

That said, the stagnation is driving me mental. I want to be applying for jobs, heading into agencies and doing some freelance work, just like I was planning to before it all went to shit. I was ready to be active and pursue some goals. I’d got so far as setting the wheels in motion, signing up for websites that would give me leads and options, even getting the fire up to apply for an ABN. All of that is so far out of reach right now, and now all I feel when I think about it is anger, resentment and despair.

born-to-run-front-cover-onlyThe one thing keeping me going is music. I’ve found solace in Bruce Springsteen’s Born To Run, an album which has grown on me with every listen, taking me to a strange film-like place where disenfranchised youth are struggling under their individual yokes, yet still finding time to stick a middle finger up at the world by getting up to the kind of romanticised shenanigans I never dabbled in. I regret not engaging in mischief as a teenager, and not getting up to more at university. I felt like I was starting to hit my stride before this mess, another frustration that keeps me awake at night and makes me hide beneath the covers during the day. If I ever get back to the real world, I hereby commit to focusing on having more magnificent times, creating more memories to both entertain and torment me should I end up here again.

I’m down to twenty unread emails now, although some of them I’ve just re-marked so that I remember to bookmark them once I’ve finished reading everything else. All that are left are the notifications of new releases from Canberran musicians that I need to at least sit down and properly listen to, at best use a little more of my savings to nab a copy. The digital variety is most likely; apparently nobody makes CDs anymore.

This is how life is today. My music and my correspondence is ethereal, floating through networks and wires in streams, downloads and inboxes, when all I want is to hold them in my hand. The only thing that seems physical right now is my anguish and illness, both things I would gladly change from concrete to conceptual.

What the Storm Left Me

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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/

Let’s Start At The Beginning – Blog Carnival 2014

You Can Do This

I’m not good at making plans. I’m someone who lives so much in the present that I’ve found myself at a point where I don’t know where to go with my future.

Yeah, we’ve been down this road before, but hear me out, just one last time. (At least, I hope it’s the last time…)

I am currently working on a plan like nothing I’ve ever done before. Okay, it’s kind of like something I’ve done before, but it’s different. It’s going to need organisation and plotting and vision and the kind of drive and work ethic that I’ve seen so many of my friends apply to their creative projects but has always eluded me. It’s a new project that I’ve only told a few friends and family about. I’m not quite ready to tell everyone the details yet, but it’s something that has been bubbling away in my brain for a good few months.

Now I’m finally ready to start putting my back into it.

To be honest, it’s not the ideal time to be starting seriously on something like this. I’ve been pretty emotionally fragile lately, and I’m pinning a lot of hope on this being something that drags me out of my funk. If it doesn’t, I’m going to be in quite a spot of bother, but optimism is the key right now.

I don’t know how I’m going to fit it around the fact that I really need to clean my bedroom and my bathroom, make sure I’m feeding myself decent home-cooked meals rather than buying fast food on the way home, or maintain the kind of social life I rely on to make sure I don’t slip into feeling completely isolated in the way that has been slowly creeping into my heart lately. I don’t know how I’m going to budget it around some of my newer financial commitments, or how I’m going to fit it around the fact that I really do seem to need a lot of sleep at the moment. Like I said, this is an endeavour fueled by hope that I can do it, with the occasional burst of I need this to work so that I can get a little bit closer to doing what I want to do full time as a booster.

I’m taking a week off work at the start of August to go home and spend some time with my family, but I’m hoping that it will also be a good time for me to get up and get some work done on this. I want to have the bare bones all laid out by the end of August so that I can start saving for and purchasing the equipment I’m going to need to make this thing work.

Right now, I’m marking out my process, the steps I’m going to have go through in order to get on the right path for this to work. I have to set up a work space and allocate the time I’m going to give to this, whether it be small chunks on weeknights or an extended period once a week on a Saturday or Sunday. I have to do an inventory of the resources I currently have, work out what I need to buy to fill out the rest of my requirements and start looking at the financial options I have to acquire them. I need to start looking for guides and mentors who’ve done this before who are going to be able to help me. I need to start plotting out the format, the progression of thoughts and phases of development. I need to see if I can actually turn this into some kind of business plan, but even if I can, that’s a long way off.

These are all things I’m not used to, and I’ve never really done before. Until now, I’ve always flown by the seat of my pants. I’m trying to totally change the way I work through things, and it’s a shift that I have to make in order to get this thing to work in the way I want and need it to.

My mum has always been keen on planning-related sayings. Fail to plan and you plan to fail. Proper planning prevents poor performance. She’s rattled them off to me a bunch of times, but it’s only now that I’m in enough of a career rut that I’m really starting to see just how important it is sometimes to get past just planning a day or a short term project with a deadline that finishes once it’s completed. For the first time in a long time, I’ve started thinking about longer term goals and how I’m going to reach them. This is me starting to play the long game, with 6 month and 12 month and 5 year goals and all that other stuff that I have always thought to be a pile of wank. Unlike back in high school, when the decision had to be made swiftly and securely, I now know myself well enough to understand what those goals are, how realistic they are and just how I can go about achieving them. I have more knowledge, more contacts and more resources than ever before, and now if the time to use them.

It’s new and it’s scary, and I’m almost inevitably going to fuck it up. But planning is not only necessary to the execution of this idea, it’s one of the core concepts behind it. I’m making a new adventure for myself, but this time I’m not just running blindly into the woods in the hope that I’ll find the things I’m looking for just by flailing around.

For the first time, I’m leaving home with a map. It won’t be perfect, and I’m sure I’ll fall off the trail from time to time, but the idea of being my own personal cartographer is intriguing and challenging and just what I need right now.

I can’t wait to see where it takes me.

*****

It’s taken almost a year for me to get there, but this blog post marks the end of my contributions to Alexandra Neill’s Blog Carnival collaboration project. THEY SAID IT WOULD NEVER HAPPEN. (“They” = me.)

If you want a refresher on what Blog Carnival was, this is where you need to click your mouse.

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.

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.

 

*****

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