invisible illness

Ep 16: Living in different universes with Ada Palmer, author and historian

| Ashley Kalagian Blunt

In episode 16, James and I interview author and historian Ada Palmer about living with chronic pain and studying the past to imagine the future. She offers excellent advice to those managing invisible illness, while also acknowledging how hard it can be.

Ada is an author of science fiction and fantasy, a historian at the University of Chicago, and a composer and musician. Her book series, Terra Ignota, published by Tor, explores a future of borderless nations and globally commixing populations. The first volume, Too Like the Lightning, was a finalist for the Best Novel Hugo award. Ada teaches history at the University of Chicago, studying the Renaissance, Enlightenment, heresy, atheism, and censorship.

Ada has achieved all this and more while living with a number of invisible chronic illnesses, including Crohn’s disease and polycystic ovarian syndrome.

“There’s nothing more similar than history and science-fiction,” Ada says. “It’s studying long periods of time in which societies change, whether future or past.”

In our interview, she describes her academic research as the history of worldviews, and how she uses her research into the past to imagine human societies hundreds of years in the future, asking, “How does the future think about us?”

Ada also discusses how her Crohn’s disease and polycystic ovarian syndrome have resulted in chronic, sometimes crippling pain, and how she’s learning to cope with living with invisible illness.

“When it’s the same pain in the same nerves over a long time, it causes cognitive trauma damage.”

Ada describes coming to understand herself as disabled as “a powerful and interesting turning point”. The first time that she raised the topic with her university students, she was surprised by their enthusiasm to discuss and learn more.

“It helped me realise how powerful it was as a conversation, how powerful it was for the students for that silence to break, and how powerful it was for somebody’s who’s in a role-model position to talk about it with them.” Her students’ support gave her the confidence to speak to her department head and colleagues about her illness and its challenges.

In this episode, we also talk about authors Arkady Martine, Claire G Coleman, Gene Wolfe, Neil Price, Junji Ito, Julian Barnes, Anita Heiss, Evelyn Araluen, and of course, Voltaire and Diderot.

You can listen to episode 16 of James and Ashley Stay at Home here, or on Apple podcasts, Spotify, or your favourite podcast app, and find out about our past episodes here.

The Lost Hours Project

| Ashley Kalagian Blunt

This is my fourth year with chronic fatigue syndrome. I’m so much better than I was, and I’m still so far away from reliably good health.

Because CFS is an invisible illness, and because I sometimes post pictures of myself out doing things, it’s understandably hard to reconcile how sick I still am with the public image I create.
Person with invisible illness sleeping
I understand this – it’s hard even for me sometimes. This week I had five very good days in a row, and caught myself thinking, for the ten-millionth time, ‘if I feel this good now, how could I go back to feeling sick? This must be the end of it.’

On Friday I made a list of things I wanted to get done this weekend. It wasn’t an overly ambitious list, just the usual getting priorities organised. It did include a few important things, like working on the copy edit for my new book. I was also hoping to write a fresh interesting post for y’all.

By noon on Saturday, my body was not having any of it. I spent the rest of the weekend curled underneath my weighted blanket. I have no idea how this week will go.

This year I decided to track how many hours I lose each month to illness, as a way of sharing the reality of chronic fatigue syndrome, and also as a way of (hopefully) showing my erratic but gradual improvement between now and December.

I’m doing this now in part because the number of hours will be tolerable to calculate. In the past they would have been too depressing.

In January I lost 89 hours. If you assume the average healthy adult should have 16 waking hours per day, then in January a healthy person should have had 496 waking hours. I lost nearly 20 per cent of the month, and that’s doing really well compared to previous years.

In other words, I lost 1 in every 5 days and I can still call that ‘doing really well’.

The numbers help, because even the photo can’t convey the reality. It doesn’t show the achy, flu-like symptoms, the cognitive struggle, the hours leading up to this moment that I’m still calling ‘productive’ even though I was struggling to hold myself upright, to think straight.

You can follow the lost hours project via Instagram. Whatever else is happening for you, I wish you good health. 

Ashley
xo

Two furry weirdos make your day

| Ashley Kalagian Blunt

Those who have been closely following my journey through chronic fatigue will remember my tedious recovery routine, which I described back in March. The routine involves multiple daily rest periods in which I’m allowed to do very little except drink tea and look at trees.

I’m also allowed to pat a pet, but as I wrote at the time, ‘This sounds great, except I don’t have a pet (I am in the market to borrow your pets, if you don’t mind bringing them by five times a day, or just donating them for the duration of my illness).’ Someone suggested I get a cat, but I was pretty certain no cat would permit the strict patting routine my recovery program requires.

I was right.

Still, when I was offered the opportunity to look after two cats over the holidays, I wasn’t going to turn it down. Especially because the cats live in a gorgeous house in Singapore, a house belonging to a friend who is both a talented artist and art collector.

Cat One would occasionally allow me to pat her for part of a break. When she was happy, she’d headbutt me. She also had a tendency to drool huge puddles when I scratched her ears. She was a sleek goddess of a cat with pure silver fur, always slinking off. Cat snuggles during chronic fatigue rest break
Cat Two loved sleeping on keyboards. That was his thing. Here’s his little tail twitching in utter delight because of all those plastic keys under his fur.

They had fancy cat names, but I was too tired to remember them, and they didn’t answer to them anyways. They’re cats. We called them Cat One and Cat Two because that was the order we met them in (Cat Two managed to get himself locked in a bedroom before we arrived, and required first locating, then rescuing, hence his secondariness).

Cat Two almost never allowed me to pat him during my rest breaks, because my breaks didn’t involve a keyboard. But he loved it when I sat down to write, which I managed to do most days for an hour or two. As soon as I sat at the desk, he’d appear in the doorway, jump onto the desk, and flop onto my keyboard and papers. This earned him the nickname Flopsy Mopsy.

He’d lie on the keyboard, purring like a little engine, and stretch out his paws one a time, like he was doing cat yoga. He also liked to rub his jaw on the corner of my laptop screen. When I wasn’t looking, he’d try to drink from my water glass. He did this so often, I eventually I brought him his own water glass.

When he tired of me, he’d leave abruptly and head to the hottest room in the house to spend the day roasting. He’d lie in the sun, and when it had moved past the windows, he’d press himself against the wall to absorb as much heat as possible. I was surprised he didn’t shrivel up like a raisin, though perhaps this is because I followed him around with his own personal water glass.

Results of the study: my hypothesis was correct, cats are not ideally suited to chronic fatigue recovery routines. However, I felt better in Singapore than I have for the past few months. So perhaps patting a pet at any point during the day can have positive health impacts. If anyone has several alpacas or a domesticated fox they would like to lend me, I’d be happy to continue the study.