Things I’ve Learned (after Andrew Sugden)

chronic illness

If something isn’t working, try a different approach.

The small things are meaningful, enjoy them fully and without restraint.

Always keep a part of yourself close to your heart, just for you and no-one else.

Don’t give in to the sunk costs fallacy. It’s always okay to change your mind.

If you can’t eat something / do something / go somewhere, live vicariously through others. Enable the people you love to do the things they love, and bask in their joy.

It’s okay to take medication for your mental illness.

It’s okay to not take medication for your mental illness.

You are basically a houseplant. Go sit in the sun.

Sometimes there’s more than one thing going on with your health. Trust your gut. If you think something’s up, talk to your doctor. You might have an undiagnosed neurodevelopmental disorder (or maybe that’s just me heh).

Pets are good for you.

Boundaries are healthy. Learn to set them and protect them, and help the people you love do the same. Be a safe person to practice enforcing boundaries with.

Live life like a poet. Stare at the moon. Sing to the springtime air. Lie in the grass. Collect cool rocks. Write honestly and messily about your feelings.

Listen to your body. It knows what it needs.

the view from my regular rest spot

Read the post that inspired this one over on Andrew’s blog.

Rules for rest days

chronic illness

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.

Breathe. Just breathe.

study, art, research, life


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 should blog more. But I’m tired.

A picture of my cat at the end

Writing, Depression, Chronic Illness


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.

And then?

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.

A photo of an old BMW at a car wash
The E30 never fails to bring a smile to my face, even when things are tough

Wendig, C. (2013). The Kick-Ass Writer. Blue Ash, OH: Writer’s Digest Books.

If you’re struggling and need someone to talk to, check out Beyond Blue, headspace, or Lifeline.