I can do the thing tomorrow, whatever “the thing” is. Hardly anything in life is so urgent that it has to happen right this minute.
There are different kinds of rest. I don’t have to stay in bed. But if I need to stay in bed, or if I want to, it’s okay to do so.
Small spontaneous activities and errands are okay, but if I have to ask myself if I should really be doing it on a rest day, the answer is probably no.
Sometimes I need more than one rest day in a row. That’s fine. Better to rest for a week when I need to, than to push myself to do Things and end up bedridden again. Because when I’m bedridden, Things aren’t even an option.
For me, with my health as it is right now, movement is not rest. Do not go for a walk, no matter how nice it is outside. Don’t do it. Go sit on the verandah and read a poem instead.
I’ve been thinking a lot about study again. The other day I accepted I’m not really well enough to study right now, and probably won’t be for a while, and I thought that I should probably get in touch with the American Australian Association and let them know and maybe give up my scholarship. In some weird way I think giving up made me feel more hopeful about things, and sort of allowed me to reassess what I want from the work I produce, and what I want it to be, and how to get there.
I had a big chat with a friend about how I think research about culture and society and people is so inaccessible a lot of the time, and I don’t understand why it needs to be that way. I think that research about people should be available and accessible to the people it’s about. Otherwise what’s the point in doing it?
I told her about my interest in the intersections of technology, society, self, culture, and art, and how I want to disrupt traditional research by looking at these different spheres through different lenses and integrating them somehow. Like interviewing people who work in tech and producing a non-fiction piece from those interviews, then writing a story from that, and making a collage, a video, a painting. How many ways can I approach this knowledge? What can I learn from these different ways of making meaning?
We talked about how anthropology (specifically ethnography) seems like a good fit for me in terms of equipping me with the skills and theoretical background I need to do the kind of work I want to do.
I sat with that for a bit. And then I started looking up courses. ANU has pretty much the only one of interest to me in Australia. And then I came full-circle back to Experimental Humanities at NYU. I love the program. I already have a scholarship that will fund one year of living in the US. Why don’t I seriously consider this program as an option?
I started an application before—a couple of months ago, maybe. I stopped half-way through because I got stumped on the writing sample. I felt (feel) like I don’t have anything suitable and I don’t know what I would want them to read anyway. A paper? My Honours story?
And just now I thought, well why don’t I write about the things I want to study, the issues I have with academia, all these thoughts that have been swirling around my head, and post it on my blog? They’re keen on non-traditional research. I could even bring my illness into it if I wanted to, include some video clips of me reading in bed if I wanted to. Paint a picture of the chronically ill person as researcher. Hello! I am still here! I have value! Please don’t leave me behind.
I think of it as a kind of meta-research, I guess. Take my Honours thesis. I wrote a story, and I wrote an essay situating that story in a context. Why art and exegesis? Why not art as exegesis? Why is that any less valid as a form of knowledge-making? It’s certainly much more accessible.
I keep a notebook for research, even though I’m no longer associated with a university. At the end I build a glossary. One day, after adding something like eight new words to the glossary, none of which I could really understand or make stick in my brain, I relabelled the glossary ‘esoteric wank’. Maybe I’m just dumb or under-educated, I don’t know. Maybe a masters will help and I can go back to ‘glossary’.
I’ve started making youtube videos. Or, a youtube video. I’ve only done one. It’s low quality, not very good. In it, I partially bleach my hair. The memory card fills up before I can finish the job. There’s a picture of my cat at the end. I don’t mention my illness. How does this fit into my process? Does it have to?
I recently read The Kick-Ass Writer by Chuck Wendig (great book, do recommend), and one bit really stuck with me. Wendig writes:
It’s worth noting that sometimes the thing you think is writer’s block is actually depression. Depression is neither helped nor fixed by attending to it as if it’s writing block—no amount of “writing through it” will solve depression. Depression requires its own solutions that you should discuss with family, friends, and any medical personnel you trust with such a decision. (p. 77).
This seems obvious, but for the longest time I was oblivious. I was blaming my inability to write on everything but my mental illness. I just thought I was lazy, or untalented, or too scared of failure to even try. But then two things happened—1) I found an antidepressant that worked for me, and 2) I got the Big Bad symptoms of my chronic illness (pain and fatigue) under control.
Surprise surprise, I could actually write again.
But it wasn’t until I read Wendig’s words that it really struck home how badly I’d been treating myself over this. The truth is I really did think I was a failure. I really did think that somehow it was my fault that I couldn’t write. I even started toying with the idea of giving up on writing altogether and switching to something like business admin or landscaping.
Which is dumb, because I’ve written stories for my own entertainment since I was a kid, and have pursued writing in a professional sense since I was 19.
But in the midst of the depression and the pain and the fatigue, I couldn’t enjoy writing. Never mind even enjoying it, I just couldn’t bloody do it. Writing my Honours thesis was hell. It felt like pulling teeth. Each word, every letter, was hard-won. In August I was sure the thesis would never be finished. But by November I had submitted. I had done it.
I started finding my way back to writing, little bit by little bit. It began with this blog—I set myself the challenge of blogging everyday while I was on my study tour. And (for the most part) I did. And I loved it. Or at least, I didn’t hate it.
When I came home from the trip I finally got a diagnosis—fibromyalgia—and I was finally able to start treating my condition. But things went downhill from there. I started a new job which I absolutely loved, and worked myself into the ground. When my contract was up my body just gave up too. I moved in with my dad and spent three months in bed, unable to look after myself. Writing was so far out of reach.
Eventually, I hit on a combination of medications that worked. It’s only been two weeks, but I’ve written more in those two weeks than I had in the entire year preceding. And then I read Wendig’s book, and finally it started to sink in that of course I couldn’t write, of course it felt like pulling teeth—I was really fucking sick.
I’m enjoying writing. I’m working on a cyberpunk/noir/thriller thing and I’m really fucking into it. I’m part of a mentoring program and I’m getting feedback on my work from an established local writer (who happened to be the one to loan me this book, thanks Matt!). I’m reading again, and having ideas, and dreaming really fucking weird dreams, and I’m loving it.
Who knows, sometime soon I might even be able to start walking my dog again.
Long story short: depression sucks, writing is great, and if writing hurts there’s probably something else going on. Remember this for next time, please, Josephine.
Wendig, C. (2013). The Kick-Ass Writer. Blue Ash, OH: Writer’s Digest Books.
So, I’m in
Albany. I’m here for the weekend for Racewars—one of those BIG car events that
everyone in the scene knows about, but that I’ve somehow never been to before…
a first time for everything, right? So here I am, with my handy dandy media
pass, blogging Racewars for the weekend.
Perth at around 10am with my mumma in tow, and managed a solid two hours of
driving before my fatigue kicked in and she had to take over. We took the
inland route—Albany Highway all the way—which was not the most scenic choice,
but definitely the most direct.
fictional town Angelus was in my mind as we drove closer to Albany. Mum and I
chatted about the town’s history, about roads and ruins and shipwrecks and the
people who came before. It’s an odd place, I think. Has a funny sort of vibe to
it. Being here sort of feels like being at the edge of the Earth. Which is
true, in a way.
are stunning. I just wish my new glasses were ready in time for this trip, so I
could see them more clearly. I saw a shooting star and thought of my work
colleagues and their frequent trips out into the desert; how beautiful the skies
must be out there.
get to watch some cool cars go fast, and write some words about it. It should
Well, this post marks the official end of my edventure. It’s bittersweet—I’m so glad to be home, and I had such a fantastic time on the trip and met so many amazing people,but I am sad that it’s come to an end and that I won’t be seeing my Aurora fam every day anymore!
I’m looking forward to getting started on my outreach work with Aurora, though. I’m hoping to spend some time at my old high school, encouraging Aboriginal and Torres Strait Islander students to pursue a university education.
In the meantime, I have a busy first week at my new job this week! And some major thinking to do about my PhD plans and life in general post-tour.
Saturday 24th November
I arrived home around noon on Saturday, after something like 36 hours in transit. I was met at the airport by the friend who had been looking after my car, and he’d picked up my dog ahead of time so she was waiting for me in the back seat! (She was very grumpy with me for about the first half-hour, but has barely let me out of her sight since. I think I am forgiven for leaving her for five weeks).
The weather in Perth was surprisingly mild, rather than the awful summer heat that I had been expecting. The sky was that glass-clear blue that I’m learning you only really see in Aus, the sun was warm but not scalding, and there was a nice fresh breeze that smelled like home.
Mum and her partner brought over some Chinese food for dinner, and I spent a significant amount of time rambling on and on about how good it was to be eating goodfood again.
I loved being on the trip, but I am very glad to be home.
Sunday 25th November
Sunday was busy! I had hoped to spend the day resting, but I ended up running around allover the place catching up with people. In the morning my aunty and I went to our local Dome for breakfast, then dropped in to see my cousin before heading back home. I really needed a nap, but my body was not cooperating, so around lunchtime I drove to my dad’s house and spent a couple of hours chilling on his couch and cuddling both of our dogs.
In the evening Mum and I met up with Trudi and Rosa who I met in London, and I took them to one of my favourite burger joints for dinner and then over to Crow Books, my absolute favourite bookshop (even after all the stunning places I visited in the US and UK). I filled them in on my time in Oxford and my plans for the future, and gave them a couple of sight-seeing ideas for their last couple of days in Perth.
Monday 26th November
On Monday I started my new science communications job (No rest for the wicked, hey?). I spent the day helping run a workshop—most of which was actually just sitting around and listening to planetary scientists talk about their awesome research.Not bad at all!
Two friends brought dinner around in the evening and we chatted and chilled and it was lovely. I drank a lot of tea. Michael’s quiche was delicious.
Tuesday 27th November
Today is another busy one. I’m at the second day of the workshop (tomorrow is the last day),then this evening I’m going to drop in to the launch party for CoRE (the Centre of Resources Excellence). It’s a new high school science program developed by the fabulous Suzy Urbaniak, which I will fill you all in on very soon. If I have time after that I will drive to Murdoch for an event run by The Conversation:The State of our Planet. It should be interesting and make for good science fiction research!
Jet lag is catching up with me though, and I am looking forward to resting on the weekend.
The fatigue was manageable today, so I felt pretty good! I woke up in time for breakfast,had a shower, then caught a taxi to my meeting with Dr Elleke Boehmer in the English department at Oxford. We had a good chat about possibilities for study,and I also got to speak with another Australian writer—Sophie—who was absolutely lovely. We’re going to grab a coffee tomorrow morning before I get on my plane!
back in at the accommodation briefly to pick up some things (pressies for the
mentors) and then hopped in another taxi to go to our high tea—our final
activity together as a group. The food was tasty (and sufficiently cute), the tea
was good, the company was fantastic. We were all given copies of the info brochures
we’ve been handing out all trip, and we all swapped and wrote notes in each
other’s books. It was lovely. We gave the mentors their presents and they all
back towards the accommodation afterwards with one of the other Scholars
(Jacinta), and we stopped in at a couple of shops before I had to call it quits
to go home and rest. After about an hour of rest I’d had enough of that, and
met up with some of the others for dinner at Thaikhun. Jacinta gave me a book
as thanks for editing her thesis, and I proceeded to get very soppy and went on
and on about how much I love her and everybody else, and how much I will miss
everyone once we all go our separate ways. It was great.
and looking forward to going home, but I’m also sad that this grand edventure
is coming to an end. It’s been the most rewarding experience, the most fun I’ve
had in ages, the best group of people to travel with… it’s been amazing. I am
so so lucky to have been given this opportunity, and I can’t wait to see where
all of the members of my new Aurora family end up!
My next post probably won’t be until I’m home on Saturday afternoon, and that’ll mark the end of this edventure series (though I might revive the tag if/when I go to study overseas). Thanks for coming along for the ride! It’s been fab.
A group of us went to see The Crimes of Grindelwald on Sunday afternoon, which was a nice outing and a break from my lounging in bed. Controversial opinion: I like the Fantastic Beasts franchise more than Harry Potter…
On Monday I rested again, but made it out for a couple of
hours and joined the others at a lunch at Rhodes House. I met some current
Rhodes Scholars and had many good chats about their studies and interests. I
made another chronic fatigue buddy and we talked about the difficulties of
managing fatigue and study and generally just being a human. I took a taxi back
to the accommodation and rested for the rest of the afternoon, and one of the
other Scholars brought some dinner back for me in the evening.
Today was another bad day for fatigue. I had a shower around
midday, and have just eaten my first meal for the day (at 4pm). We have a group
dinner tonight which is a half-hour walk from here, but I’ll be taking a taxi
with one of the mentors who is also feeling unwell today. I might have to go
back to bed for a little bit between now and then.
Tomorrow I have a meeting in the morning and then a final
group get-together in the afternoon—we’re having high tea. It should be a
pretty chill day!
Today was slow and comfortable. After breakfast I went back to bed for a couple of hours,then I grabbed a coffee and a slice of cake from the café at the YHA around lunch time and settled down to read. I’m now about halfway through Caliban’s War, and things are happening. It’s intense. I’ll be heading straight to Crow Books when I get home and picking up Abaddon’s Gate.
gathered a little more energy I decided to walk into the centre of town and look
around. I ended up at Blackwell’s Bookshop where a couple of books on AI might
have leapt into my bag of their own accord…
is a treasure. It’s two or three levels, it’s hard to tell, with stacks upon
stacks filled with all manner of interesting books. One of the mentors
recommended the basement level so I went down to suss it out, and I was not
disappointed. I thought Boffins back home was the best bookshop for nerdy stuff
and specialty books, but I was wrong. Blackwell’s wins hands down. I wish I
could bring it back to Perth with me.
losing track of time in the bookshop I crossed the street to visit the Museum
of the History of Science. Yet another favourite place among all my other favourite
places on this trip. If you ever get a chance to go, you really, really should. I took a selfie with
Einstein’s chalkboard, but as I am bad at selfies it turned out terribly. So I won’t
be posting it. Sorry not sorry.
In the evening I walked to the Eagle and Child Pub in search of dinner, but it was packed and so warm inside that my glasses fogged up and I was effectively blind for a good ten minutes, so I ended up heading back to Jamie’s Italian to eat. The Eagle and Child was where Tolkien and CS Lewis set up their writing group, I am told.It felt a little too cozy and cramped for a writing group I’ve gotta say, but it was nice.
dinner at Jamie’s I made some notes about a couple of story ideas that are
brewing in my brain. I finished the evening with a delicious chocolate brownie
and a cup of English breakfast tea. I was tempted to take more photos of Thaikhun
through the window because it’s just so damn pretty, but the restaurant was
quite full and I was already getting funny looks for the number of snaps I’d
taken of the chandelier.
It was agood day, all in all. If I have the energy tomorrow I’d like to go look at theOxford Castle. There’s a mound! It looks interesting.
Today I proofread an archaeology thesis for one of the other Scholars.
Oh my gosh.
She is amazing (I already knew she
was amazing, but now she’s like, amazing-er).
Her work is so insightful and respectful and original and it took me way longer
to edit than it should have because I was so engrossed in just reading it. I’m so excited to hear her
results and see where she goes from here, because jeez, that woman has a lot to
offer this world.
the afternoon working together at the George Street Social, a lovely two-storey
café with powerpoints and wifi and good coffee. We both had a serving of
pancakes with fresh fruit and maple syrup for afternoon tea, which was delicious,
and fantasised about the high tea we will be attending on our last day in the
Late in the
afternoon we parted ways briefly—I went in search of Boots, a Priceline sort of
deal which I’d heard about on the interwebs and was curious to check out. I
found a perfume by one of my favourite YouTubers, replaced my empty mouthwash,
and stocked up on some hair dye for when I get back home.
Then I metup with Ms Amazing Archaeologist and one of the mentors, and we had Thai foodat Thaikhun for dinner. It was delicious, and the atmosphere inside therestaurant was bustling and urban. For the hour or so that we were there Ialmost forgot we were in Oxford!
One of the other Scholars joined us for dessert, and my chocolate ice cream betrayed me by containing chilli. It was very off-putting, expecting my throat to be numbed by the cold and instead finding it warmed, very off-putting indeed.
I spent the
rest of the evening reading Caliban’s War,
the second book in The Expanse by
James S. A. Corey. And now to bed!
Hi friends. Sorry for missing the last two days! My fatigue was super bad so I spent most of my time in bed or dragging my unwilling body to meetings.
But I am back! And feeling better. And I have good news and three days’ worth of stuff to catch you up on. Please excuse the weird format that follows, but I think it’ll be the best way to structure this one. Skip to today’s post (Friday 16th) if you wanna get to the happy bits, and ignore the last section if you’re bored or not keen on hearing me ramble on about chronic illness.
Tuesday 13th November
I woke up at 8am absolutely wrecked after the London reception the night before, so I went back to sleep until lunch time and then had a quick shower before heading off to my meeting. I spoke with Dr Steven Connor of CRASSH (Centre for Research in the Arts, Social Sciences and Humanities) at Cambridge. He was lovely, and we had a good chat about academia in general and the changing structure of the Humanities at Cambridge.
After my meeting I walked through a little park behind Queen’s College and around the corner to Clare Hall, where we had a group session on applying for Cambridge.
To be honest, it was not a good time. It is likely that that was due to my fatigue-induced bad mood. I left partway through because I was so tired I was sure I was going to either burst out crying or throw up all over the table.
I stopped by a café on the way home to grab a sandwich and some snacks for the evening, because I knew from the headache coming on that I wouldn’t be capable of going out to fetch dinner later on. I ate my ham and cheese toastie and skulled my coffee, then fell asleep for four hours. I woke up briefly to eat a muffin and finish the last little bit of LeviathanWakes, then I went back to sleep until morning.
Wednesday 14th November
Wednesday was another tough day. I made it out for lunch with Gemma (my first meal of the day) and she very kindly relieved me of my washing so that I could go back to sleep.
I had a shower at some point, and drying my hair left me so exhausted that I had to sit on the ground in the bathroom for ten minutes before I could walk the short distance back to bed.
In the evening I took a taxi over to Anglia Ruskin University for their open night, and I’m so so glad I went. I met Dr Tiffani Angus and Dr Helen Marshall from Creative Writing, and they were both amazing. We talked on and on and I felt so at home in their company that I could have stayed there for hours.
Afterwards I stopped by the group dinner briefly to eat a little bit, then started feeling ill and fatigued again so took a taxi the short distance home. I slept for twelve hours overnight, on top of the however-many-hours I’d already spent napping.
Thursday 15th November
Today was better. I had a meeting with Dr Una McCormack from Anglia Ruskin this morning at Fitzbillies down the road, and it was so good. The meeting concluded with us agreeing that I would apply for the PhD program in Creative Writing with (probably) Tiffani as my main supervisor and either Una or Helen as a secondary supervisor.
Oh my gosh. I am so ridiculously excited.
All the other universities have been so amazing, and all the academics I’ve spoken to have been super welcoming and supportive, but I think this is the one.
Even at Stanford and Harvard, which I was so impressed with, I would have had to squish my research into their framework. But here, I can 100% do the work that I want to do. And these three ladies are fabulous, and accomplished, and a joy to chat to.
We ended up talking for over an hour, and finished up just in time for me to take a taxi to the bus stop. I met one of the mentors and two of the other Scholars there, and we hopped on the bus to Oxford!
I sat next to a lovely lady called Susie on the bus (the third Susie in my life, all of them lovely) and we chatted the whole way. We’ve swapped contact details and will be sending each other postcards once I’m back in Perth!
We’re now in Oxford, where I have no academic meetings. So this week I’m going to be a tourist, and rest as much as I need to. It will be a nice end to the trip, I think. In eight days I’ll be home!
Chronic fatigue ramblings
Okay, so here’s the thing. Chronic fatigue sucks. And experiencing a bout of fatigue while travelling on the other side of the world, so so far from home and my support systems, sucks big time.
I didn’t blog the past two days not so much because I was fatigued, but because being fatigued and unable to do things that I could do relatively easily just a few days before was so upsetting. I was in a foul mood both Tuesday and Wednesday, and anything I tried to write would probably have read something like Catcher in the Rye meets A Clockwork Orange. And not in a good way.
But hey. I’ve made it through another few days of fatigue and for the moment I have a little bit of energy, so that’s nice. I still met some amazing people and got to experience beautiful Cambridge (even if only from the window of a taxi). And I learnt that even here, on the other side of the world, I’ve got people looking out for me (thanks Aurora fam).
Unfortunately, my experience at the group meeting on Tuesday has turned me off Cambridge (the university, not the place). I left that room feeling like there was no space for someone like me at Cambridge—someone who struggles with chronic illness and needs extra time/support sometimes. I left that room feeling like there was no way I could possibly cope with the workload of a postgraduate degree at Cambridge, and that somehow that was a personal failing. Like I said, it was not a good time.
But we’re in Oxford now, I have some Anglia Ruskin stuff to work on, I have plenty of time to rest and no meetings I need to get up for in the mornings, and in a little over a week I will be at home with my puppy dog and my car and my friends and my family.
This trip has been amazing, but these last two days knocked me around a bit, and I’m ready for a hug and a cup of Milo.
(Thanks Robyn for sharing your Vegemite this morning—it was just what I needed).