Making My Brain My Bitch
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.
Ten Thousand Little Words
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.
At Risk of Being Wrong, Here’s To 2017
I feel like being optimistic about 2017 is foolish, but here I am, doing just that. Looking through my journal the other day, I found exactly the same optimism in my first entry for 2016, and look where that got us.
While 2016 was shitty for a lot of people because of wonderful people who died (I’m still not ready to believe Carrie Fisher is gone), or because of certain election results (there’s the obvious US and UK cock-ups, but the Australian election and its repercussions for Centrelink and Medicare scare me more), but the biggest issue for me was my health.
For most of 2016, I was ill. It wasn’t a physical malady, so even I’m a little reluctant to use the term, but there really is no other description that fits the bill.
In March, my epilepsy took me from a place of optimism and drive, to somewhere dark I hadn’t been since 2012. The ensuing depression was some of the worst I’ve ever dealt with, but this time I was willing to be open with those around me about what it was doing to me and the kind of help I was in desperate need of. I can happily say that has started to pay off over the last few months, and I’m getting the medical help I need to move towards the more even keel that will make the shift into the real world and employment a reality.
Last time it took me 10 months to recover; so far I’m clocking in at 9, but I’m in a better position now than I was then. I’ve not been working full time, but I’ve got a couple of freelance clients, and doing those occasional projects has really boosted my confidence in my own writing and in the idea that I might be able to do this as a side project.
Last time, serendipity delivered me back into a radio gig, but now that I’ve decided I need time away from that industry, where I have spent almost my entire career, that won’t be so easy. I’m working with my neurologist and GP to make sure I’m not going at it too hard, and working with Employment Services Group in Braddon to assess what my skills and strengths are so that I can find a job where I will be a good fit. I’m still in the process of completely re-writing my CV for temp work, and I’m still trying to work out what the hell I’m going to apply for, but the cogs are finally turning and I feel like I’ll get to where I’m going in the next month or two. (With the job market in its current condition, that might be a little over-optimistic, but I think I can do it.)
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.
Dear Mr Springsteen
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.
You’ve Got Mail, My Dear
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.
What the Storm Left Me
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/