Since the start of this year (and to be honest, since very late last year), I have been doing my best to commit myself to a handful of little things, and this is a blog about that.
This is the second in a series about my goals for 2018. The fact that I’ve gotten to a second entry is likely as surprising to you as it is to me. You can find the full list of posts I’ve written on this theme here.
2. Get my epilepsy in check.
You don’t have to have read much of this blog to know that my brain is a bloody mess. Epilepsy, depression, just being generally scattered and forgetful: it’s not a particularly ordered thing to live in.
Since I started tracking my seizure patterns again in August 2017, I have had 15 seizures, including two this morning. That doesn’t count the number of times I have lost feeling or the ability to move my limbs or extremities for no apparent reason.
Something needed/needs to change.
This year, I’m going to try to get better sleep. I’m going to be as compliant as humanly possible with my medication through the use of Webster packs. I am taking notes on every seizure, and fighting for extra tests just in case. I’ve been able to negotiate a part-time work arrangement so that I have time to rest mid-week and I can reduce my stress levels.
The effect of these steps and sacrifices remain to be seen. I have a neurologist appointment and ambulatory EEG in February which will hopefully offer some more answers.
Until then, I’m just here at home counting milestones – seven days, thirty days, three months – hoping that it will all pay off sooner rather than later, and I can go back to living a life that I feel comfortable in.
This is the first in what I hope is a series of posts about my goals for 2018. Knowing my tendency to start these things and never follow through, I am incredibly skeptical that any of them will come to fruition (including the completion of this series), so I expect you to come into this entry with the same frame of mind.
1. Write 10,000 words a month.
I have tried NaNoWriMo twice now, and both times have been an absolute failure. I wasn’t even trying to do it properly – both times I had an idea that I had already started working on. The second time, I wasn’t even reaching for the full 50,000 words. Instead, I set myself what I thought was a more suitable goal of 20,000 words on top of what I’d already written (from memory, about 3,000 words). A month on, and I’ve reached 10,000 words of varying degrees of quality on what I believe may be no more than a novella. At this stage, I don’t really care. I just want the damn thing finished.
My last job was a “creative” one, writing advertising for radio. I’d spent my entire life working towards it, but after ten years of work experience, study and working in the industry, I was sick of the job. I was writing for the local street press, and it was scratching my itch to write, but it didn’t feel particularly creative. I had a short story sitting in my To Do pile, and my major project to finish, but nothing was coming to me anymore. I was thinking up ideas in the shower, or dreaming amazing things that set my mind alight with possibilities, but I wasn’t putting any of it on the page. It just stayed in my head, and I did nothing with it.
When I had The Seizure That Turned My Life Upside Down in March 2016, I lost the will (and the ability) to work on anything. I tried to keep my column up for BMA, but it wasn’t giving me the same pleasure it used to. It had become a chore. I thought about blogging again, and did a few times to try and get my anguish out, but it felt hollow and narcissistic. I needed a new project, a new drive, and a new job that wasn’t going to wring all my creativity into 30 second chunks for a wage that was almost half the average wage for the city I lived in.
I achieved the third thing on that list last August. I’m now working for significantly more money, in a (very) challenging job, surrounded by the kind of work culture I could never have dreamed of in the radio industry. The people I work with are incredible, the support I’ve had despite my significant health challenges over the last few months have been beyond my wildest dreams, and I’m learning new things all the time. I’m so incredibly lucky to have stumbled into this organisation. (For a number of reasons, I won’t be sharing the name of my employer here.)
But what about the other two? That need for a project and for that drive to move me forward in terms of my writing?
That’s why I’ve set this goal. Broken down, it works out to be a little under 350 words a day. It doesn’t matter why I’ve written them, what they’re about, or whether I intend to publish them. They just have to exist on the page.
Just 350 little words. Or 2,500 a week. However it happens, a total goal of 10,000 a month.
Even if I only achieve it in January, I’ll be happy with that. Because hell, it’s a start.
And I’ve got 616 words to prove it.
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.)
In 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.
12 May 2016
Dear Mr Springsteen,
I have epilepsy, and I have spent the last month and a half recovering from a bout of seizures I suffered in the middle of March. I used to work in radio, had a reasonably happy life in a city I love, living independently and working towards becoming a freelance writer. I’d recently joined my first band (!) and was starting to engage with some of the challenges I’d been dreaming about since I was a kid.
Now I’m living at my parents’ house, in a regional area five hours from where I want to be, with a stutter that has killed any chance of continuing work in radio and significantly effected my employability across the board. Even the most basic of tasks can be incredibly tiring due to my motor skills going AWOL, and holding a conversation is a struggle most days. I’m an avid lover of live music – oh, I’m sure you’d love some of the artists coming out of Canberra at the moment – but I won’t be going to any gigs anytime soon because now loud or unexpected noises put me on edge, further limiting my speech and greatly heightening my anxiety levels, leading to an further increased risk of seizure. My doctors and neurologists have no idea why this is happening (except that it’s not a tumour, stroke or blood clot, which is a blessing) so there’s no treatment plan for me, except waiting to see if it comes good.
Cripes, that was a bit of a downer to start with. Sorry about that.
But it’s important that I break it all down, because I am in a pretty dark place right now. I have nothing to hold onto. The rewards I would normally give myself to try and feel better – a trip away from home, a night out with friends, seeing a band – are all out of reach. All the little goals I’m setting for myself? I’m missing them by a mile.
In the days after the first in my cluster of seizures, I bought your Born To Run album off iTunes at the suggestion of my aunt. (I prefer concrete copies, but I haven’t been able to get to a record store since this all hit the fan.)
Since then, your album has been what I cling to. I was never really one for much mischief, but the youthful abandon and longing to throw off the shackles of life and be free described in “Thunder Road” and “Born To Run”? I was working towards living that, taking advantage of my youth (I’m 26) and being myself and how the system can go to hell. I had felt trapped in my last job, and I’d just broken out of it, putting in my resignation two weeks before I fell ill. I was starting to feel the wind in my hair, and I was looking forward to seeing where the road would take me.
And then came the contrast. Certainly not as violent or criminal or broadly devastating as the actions and consequences of your characters, but just as desperate. Locked in, and clawing to get out, to no avail. That’s me now, stuck in a brain that feels like it is short-circuiting almost constantly. I am writing this letter in one of the few moments of clarity I have been blessed with.
Your album has reminded me of two things. The first is that I am very lucky. I don’t have to resort to cross-river deals or run from guns and cops, because I am a white, middle-class woman, living in my parents’ house in a country town in Australia. The second is that I was so close to beating this condition – I’d been seizure free almost two years before my relapse – that I should be able to do it again; I need to fire up the engines and get going. (Ironic, since my condition eliminates me from being able to drive.)
I’ve lost count of the number of times I’ve listened to Born To Run. It is the soundtrack to my days, my solace in the darkness, my motivator and my comfort. Though the story is different, the emotional ups and downs are calling me back to my own type of freedom. I listen to it every night as I go to sleep, willing it to imbibe me with its energy and the drive you used to make it happen, 40 years ago. (How was it that long ago? It still sounds fresh and vivid and alive.)
I’m yet to dive into your full back catalogue, although it does come highly recommended. I just don’t think I’m ready yet. If it’s alright with you, I’m just going to curl up with this album a little while longer, a little musical safety blanket to get me through the next few weeks, months, however long.
I honestly don’t know if I’m going to get through this, though. My speech was so precious to me, and now it’s barely there. I haven’t seen my friends in over a month, and the distance makes me ache. But even if I don’t, if I’m stuck in this shitty existence until I’m dead, I wanted to thank you for the little bit of peace you’ve brought to my soul and the little bit of fire you put in my belly. Born To Run is what my motor is running on right now, and I have needed every note of it.
Thank you. Thank you so much, for forever and a day.
I initially didn’t want to post this here. I wanted to send it off into the world and never hear from it again. I wanted to send it to some vague record label address in the hope that it might one day get to the eyes I wrote it for. If it never did, that didn’t matter. It was the act of writing it, and of sending it that held meaning. It was an act of healing, where the process was more far more important than the result.
Two months later, I’m in a much better space than I was when I wrote this. I’m back in Canberra, starting to work again, and my speech has mostly recovered, though it does have the occasional hiccup. My brain still struggles a little when there’s too much sensory stimulation or I’m trying to think about more than one thing at a time, and I had another small seizure a few nights ago at band practice, but apart from that, I’m doing okay.
I’ve been taking some time off Born To Run over the last month or so, just to get back into the swing of listening to new things again. I’m loving Brendan Maclean’s funbang1, and some of the older gems in my collection from Inland Sea and Paul Dempsey. I made a mixed CD as a belated wedding present for a friend, and caught up on a whole bunch of podcasts. I finally got around to digging into some of Bruce Springsteen’s other works (Born In The USA is good, but inconsistent; Darkness on the Edge of Town is easily #2 on my list of favourite albums of his).
Right now, I’m listening to Born to Run again after a month or so’s break. I still love it. It still means so much to me. I still feel the need to say “Thank You” all over again.
It really is a great album.
Over the last seven months, a lot of my energy has been taken up by a battle with my gas company. Not only have we been getting huge bills, which I was quite okay with taking on the chin, they developed an infuriating habit of reissuing bills, sometimes up to 6 months after it was originally issued.
Naturally, I was less than impressed.
Firstly, I expect that a company with remote access to my meter readings would be able to get it right the first time. If they had an issue, you’d think they would let me know that there had been an error with the meter, then fix it. Pretty simple premise, but apparently far too difficult to put into practice. In fact, it was so difficult that in two separate cases, they had to revise the bills twice, and the second time, they didn’t even send me a new invoice. Instead, they just put it on my account without telling me, making for an unpleasant surprise in the form of an unexplained “overdue amount”.
During my time doing accounts at two different radio stations, if I had made two major errors on two different bills on the same account in less than six months, I would have been pulled aside and had it recommended to me that I consider a new career path. Three times, and I most likely would have been sacked.
Nope, apparently in the case of my gas supplier, that’s all hunky dory.
Then there was the issue of the time frame. I’m pretty reasonable and I get that mistakes get made, but there were three occasions (one while I was in the middle of the dispute in question) where bills were reissued (usually with a hike in price) more than three months later. That meant that I couldn’t check the reading on the meter, so I couldn’t effectively dispute the charges. It also meant that I couldn’t budget for them – I’d already paid the bill, and these revisions were coming out nowhere. Why were they coming back to haunt me again half a year later?
Those timeframes seem pretty unreasonable, don’t they? Well, it got worse.
A good five months into my correspondence with the company, during which I had asked the question multiple times, they told me that they didn’t have a revision policy in place. That means that there isn’t a maximum number of days between first issue and any revisions, nor a maximum number of revisions that can be issued. I was flabbergasted. Surely there must be some kind of rule in this regard to stop bills being issued with wild abandon?
After seven months of this nonsense, and after I got the ACT Civil and Administrative Tribunal (ACAT) involved to mediate in the matter, I found out that there is a rule. And it stinks.
This is a quote from my gas company about the National Energy Retail Rules as relating to re-billing, with the information confirmed by my contact at ACAT.
“An account can be re-billed at any time, however [it] cannot be charged more than 9 months period (3 billing periods) [sic].”
Thankfully, my case has been resolved – the entire disputed amount was wiped from my account, and I’m satisfied with that for now, though heaven won’t help them if they screw up again.
But now I know the current state of play in regards to re-billing, this is about more than just me.
“The National Energy Retail Rules allow the recovery of undercharges for a period up to 9 months.”
The National Energy Retail Rules regarding re-billing offer inadequate protection for consumers. Despite all these issues, I could still be re-billed for some of the invoices that were issued and corrected, anytime in the next three to six months. If they are reissued, due to the time that has passed, I can’t go back and check that their new readings are correct for that period. That could happen to anyone on their gas or electricity bill, at any time. It’s frustrating, it’s outrageous, and it’s wrong.
I’m currently gathering more information about what departments and individuals I talk to about getting this changed to a more reasonable timeframe. I feel that 30 days is the absolute maximum that is acceptable – if you can’t get your business sorted in that time, there is something seriously wrong, and your customers shouldn’t have to pay extra for your shortcomings.
I suspect this is going to be a long fight, but since I’m currently not working, I’ve got plenty of time on my hands. Once I’ve got my research together, there will be a petition, I’ll be doing my utmost to get meetings with relevant parties, and I won’t stop until these rules reflect more reasonable timeframes for consumers. Stay tuned, and I’ll keep you posted every step of the way.
This isn’t over. This little gas flame has only just started to burn.
Note: The name of the company I’ve been in dispute with has been left out deliberately, only because chances are that your gas or electricity company has the same lack of revisions policy. I’m gradually working my way through the list of Australian gas suppliers, but so far none of them have had a policy regarding a maximum number of days between revisions or a maximum number of revisions.
Have you ever had your gas or electricity bills revised in an untimely manner? Get in touch via the Contact page.
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.
Here’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.
The 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.
Things I did for the first time today:
- Handwrote something (albeit in a very stiff version of my handwriting)
- Sang in the shower
- 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/
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.
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.
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).
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:
- I have to go to work on Monday morning.
- I don’t have the money to make that leap into the unknown.
- 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.
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.