You’ve Got Mail, My Dear

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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.

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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/

Flanders Fireworks

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My dear Edith,

Your last letter has been pressed to my chest for the last month, and I apologise for not replying sooner. The rain has been unrelenting, and I did not want to spend ink and paper on a letter that would likely be destroyed by the wet. Please know that the delay in my response does not mean my love for you has in any way diminished. On the contrary, it grows each day, as does my longing for your touch and your company. You are the heaven I carry to get me through this hell.

One of the photographers from the War Office visited recently to take pictures of how we’re all getting on. He was here two weeks; he got lice after the first, and took ill with a fever by the second. It must be nice to be able to head back home because you’re itching and have a warm head.

Before he left, he showed us some of his photographs from his last visit to Ypres. Some of them showed just how ghastly it is here, but some were strangely beautiful. We spend our days and nights living under the constant shellfire, so it’s hard to see any kind of bright side to it, but one of this fellow’s pictures of the night sky over the trenches was remarkable. He had let the exposure of the film run longer than usual, so you could see the trajectories of all the artillery fire overhead. Upon seeing it, I was struck with immense awe, the paths of flying gunpowder, metal and death somehow breathtaking. (The irony that they also take away the breath of those they hit was not lost on me.) The sky was lit up like Guy Fawkes Day, lights streaking along high above the horizon. I feel grisly thinking about it, but it was so beautiful, perhaps more so because it was trapped on film and not aimed at our positions.

But none of those fireworks could ever shine as bright as the torch I hold for you, my dear Edie, and no photograph will fill the ache in my soul that comes from being robbed of your darling smile and wit. (Please send me one all the same – I would love to show the lads what a prize and joy I have waiting for me back home. They will be terribly jealous, and I will be terribly proud.)

I love you forever, my darling. Give Mother a kiss for me, and thank her for the socks.

With all my heart, and all my kisses, I miss you and love you dearly.

Forever yours,

Bert

 

*****

This post was inspired by the photo at the top of the page, highlighted by a post on r/WritingPrompts. Click on it for a link to the Flickr page for the original recolouring.

Please note: this story was written on the fly as an exercise, so I can’t guarantee that any of the historical elements are factual.

Ready to go… nowhere?

Clean desk. A good start.
Clean desk. A good start.

Today is the last day of my week off work. I turned 26 last Sunday, and since that was a strange sort of milestone (one that deserves its own explanation) and I had been working my arse off at work for the last month, I figured I deserved a Break with a capital ‘b’.

It’s been an odd nine days: delightful most of the time, but more sobering towards the end. I spent Saturday through Thursday in Sydney, seeing bands and Men of Letters, going to a neurology appointment (not as dreadful as it sounds), hanging out with my wonderful mum, seeing friends I haven’t seen in ages and meeting new ones.

Friday and Saturday were spent almost entirely in bed, with a brief writing sprint on Saturday morning, before whiling away the late afternoons and evenings by binge listening to The Black Tapes Podcast or jumping between series on Netflix. It was these two days that marked the biggest shift in my mood; I had gone from blissfully plodding through my daily itinerary to flipping between being edgy and numb in the space of what felt like no time at all. Such are the perils of having a neurological condition, I guess.

Despite all the wonderful things I’ve felt and experienced over the last week, I have found myself frustrated. Part of the reason why I took this week off was to work on personal projects: writing blogs, recording audio for a new podcast I’m working on, finishing diaries and getting a new study space in order. This post means I’ve got the first one done (although I guess you could also count the two pieces I wrote for BMA), the second has gotten absolutely nowhere, and I’ve barely made a scratch on the diaries and writing space, even if I did finally manage to get hold of a desk (see above).

One of the projects I wanted to get done... More to come.
One of the projects I wanted to get done… More to come.

Now that I write all that down, I realise I’ve done a lot more in the last few days than I initially thought. It’s definitely far more than I have managed over the last few weeks and months, but I feel like that’s more of an indictment of my laziness, poor mood and terrible management of non-work time and energy rather than any great recent wave of progress.

This frustration has caused me to revisit the memories of the dark days of 2012/13, when I was living at home, depressed and disillusioned. Even though they were the worst ten months of my life, towards the end I was starting to work out how to manage my own time and energy to build personal projects. I was building Gigs Out West in a very slow but steady fashion, starting to do copywriting and voicing jobs for my dad, and I had enough confidence to start applying for jobs again. At the time, I knew that this ‘floating’ time was important, but now I’m stuck wondering what it might have turned into had I stuck with it rather than returning to the conventional workforce.

Until recently, I was sure that I probably would have got absolutely nowhere, but now I’m starting to wish I’d taken it a little bit further. I wish I had more time and far more energy and drive to develop freelancing skills and a resilience that could open new options outside the usual employer/employee working dynamic.

Coming to the end of this week away from the office, I feel like I am ready, just like I was as I came to the end of that ten month period in 2013, to start doing things off my own back. I’m refreshed enough that I have the energy to write my first blog in months, and I’m keen to start sitting down and making stuff at the times that suit me best, like late at night without the worry of having to get up in the morning. I’m ready to explore new ways of thinking and making content, reading and writing and trying to make myself into the person I want to be.

But all the optimism in the world won’t make the following facts go away:

  1. I have to go to work on Monday morning.
  2. I don’t have the money to make that leap into the unknown.
  3. Even if I did have the money to make that jump, would I really be able to afford to take the time I’d need to recalibrate and refresh beforehand?

That’s what has really bothered me for the last few days: just as I’m getting ready to start work on reaching for new horizons, the reality of employment obligations and my financial situation comes up and taps me on the shoulder to remind me that I don’t have the right or the ability to go forth and be an explorer.

The idea that this is how I’m going to spend the next 40+ years of my working life terrifies me even more than the concept of death.

For now, I’m refreshed and ready to get things done, even if it’s a feeling that only lasts for another 24 hours or so. It feels like a waste to use this new energy on housekeeping, but if I can do that, maybe I can get to the next stage?

So despite my misgivings, I am spending today cleaning my room, moving my new desk into place, doing washing and cleaning my bathroom. I have to learn to celebrate the little successes I have when I’m up and going, and then try to keep them rolling. Once I’ve got those sorted, then hopefully everything else will be that little bit easier.

Let's roll.
Let’s do this.

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.

Charting Success – Blog Carnival 2014

From "Before I Die".
From “Before I Die”.

I’ve been trying to work out how to write this blog entry for months. Literally, months. It seems like a simple enough premise: write about something I’m good at.

It should be simple, but it’s actually really bloody hard, for a number of reasons.

The first is that I am enough of a self-doubter that I initially couldn’t think of anything that I was good at that wasn’t actually a negative trait. I’m very good at procrastinating. I’m really good at forgetting things. My ability to make a mess is really, really impressive. These are all (not necessarily) secret talents of mine, but none of them are things I want to crow about from the rooftops.

The next thought I had was just to ask someone what I’m good at, but that felt like false modesty. I should know what I’m good at! I shouldn’t need someone to tell me, and even if I do, it would sound like I was fishing for praise if I was to ask. So that was quickly ruled out.

Finally, I saw down and scribbled down dot points about things people had complimented me on lately. None of them were particularly grand, and none of them were really anything I felt I could wring a sizable amount of words out of. So, I just left it and tried to ignore the fact that despite my best intentions, I was still stuck on this one topic. So close, yet so far.

In the end, I gave up on writing about something I was good at. Instead, I just drew a brainstorming chart and decided to let that do the talking.

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In conclusion: I appear to be good at writing about not being able to write about being good at something, and brainstorming charts.

 

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The End.

*****

This blog is the latest in a series of really, really late additions to Alexandra Neill’s Blog Carnival collaboration project. And by god, I’m going to get them all done eventually, mark my words.

While you’re waiting on the next installment, why not read what some other (more timely) folks had to say on the matter:

If you want a refresher on how Blog Carnival works: this is where you need to click your mouse.