Ep 20: Up against the limits of medical knowledge with author Josephine Taylor

“I was pretty well bedridden, unable to move very easily for about the first year … I’d sort of have to shallow breathe into the tops of my lungs.”

When Josephine Taylor first began to experience chronic pain, she started to reduce her commitments. She was a career woman and a mum. But gradually, she had to shut down her whole life. Meanwhile, she struggled to get a diagnosis.

  • James and Ashley Stay at Home podcast
  • James and Ashley Stay at Home podcast

Eventually the doctors concluded she had vulvodynia, chronic vulva pain lasting three months or longer that is medically unexplained. “That doesn’t mean it’s not real,” she adds. “It’s a very real medical condition.”

Josephine is a writer and freelance editor who lives on the coast north of Perth, Western Australia. She is Associate Editor at Westerly Magazine and an adjunct senior lecturer in writing. Her debut novel, Eye of a Rook, is drawn in part from her experiences with vulvodynia.

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Trapped with condition, she began to learn its history and write about it. “It seemed to me very important that people understand that actually there hasn’t been a great deal of movement forward in understanding or awareness since the 1860s.”

Eye of a Rook is a novel with two narratives, both about women suffering from vulvodynia. One storyline is set in contemporary Perth, and one set in England in the late 1800s. The historical narrative includes shocking details about women’s medicine and treatment at that time, drawn in part from research into “The London Surgical Home for the reception of Gentlewomen and Females of Respectability suffering from Curable Surgical Diseases”, which opened in 1858. Taylor describes the barbaric surgical procedure, called a clitoridectomy, which is proposed in the opening chapter as the solution to one of your main characters’ suffering.

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For both women, their illness affects their personality, and robs them of themselves, as well as affecting Alice’s career in Perth. We discuss how vulvodynia affected Josephine’s life, medical victim blaming, the difficulty of being diagnosed with a little-understood condition and the ongoing confusion of it, and the ‘finitude of possibility’ that chronic illness inflicts on a life.

Josephine is full of excellent advice and reassurance for anyone suffering chronic and/or invisible illnesses, about surrounding ourselves with people who believe us, and not letting our past dictate our futures.

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You can listen to episode 20 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.

Check out Josephine’s #FridayCookBook on Instagram and join her at this free Avid Reader online event with Lee Kofman on 9 February.  

This episode’s book chat
The Fifth Season by Philip Salem
Wintering by Krissy Kneen
‘The Wife’s Story’ by Ursula K LeGuin
Imperfect by Lee Kofman (who we spoke to in episode 3)
Unlike the Heart by Nicola Redhouse
Pain and Prejudice by Gabrielle Jackson
Show Me Where It Hurts by Kylie Maslen
Hysteria by Katerina Bryant
One Day I’ll Remember This: Diaries 1987-1995 by Helen Garner
In the Woods by Tana French

For more information about vulvodynia and support:
The International Society for the Study of Vulvovaginal Disease
The Australian and New Zealand Vulvovaginal Society
The Pelvic Pain Foundation of Australia
The National Vulvodynia Association (US)
The Vulval Pain Society (UK)

New Year’s resolutions for 2021

If 2020 taught us anything, it’s that there’s no point making plans. I planned all kinds of things last year, including that I would be in Canada over this holiday season to finally visit my family after four years of CFS making the journey impossible.

Instead I’ve spent three damp and soggy holiday weeks in New South Wales, mostly squelching around my neighbourhood, much like I did all year.

At the start of 2020, I sat down in all earnestness and made some actual, genuine resolutions (as opposed to my 2019 resolutions, which included climbing Mt Everest in a Pikachu onesie).

I planned to increase my micro swims to tiny swims, and to jump in the pool without hesitation. I was doing great at this in January, but then in February my CFS got much worse, and I wasn’t able to swim. I kept trying to get back to it, but then covid closed the pools, and I got sicker.

Another resolution was to read more, which I’d assumed I’d be able to do as my health continued to improve. But it really didn’t. My CFS recovery tanked in February and March, and again in August and September, and I felt like I spent the rest of the year trying to recover from those months, just to get to where I’d been in January.

I also wanted to develop my listening skills and ask better questions, but between CFS shutting me down and covid shutting everything else down, I gave up on this. If anything, I’m less inclined to ask any questions when I go out these days.

There was one resolution I managed, however: to have a first draft of my new novel by 31 December. I’m happy to tell you I’m already into draft 2, and I’m very excited about it.

Also in 2020 I completed the Lost Hours Project. Every day, I recorded how much time I lost to illness, ie how much time I spent in bed during the day rather than up living my life. I was very optimistic at the start of the year, so I thought it would be an encouraging exercise. I thought the numbers would gradually improve.

I lost 1024 hours last year. If you assume 16-hour waking days, that’s 64 days – more than two months.

But I also realised that this project wasn’t working. I’d wanted to quantify the experience of illness, to find a metric to compare days and months. This isn’t it. In September I lost 89 hours to chronic fatigue and in October I lost 85. But those two months were wildly different experiences. In September (and August) I felt like I was drowning almost every waking minute. In October I was quite functional when I wasn’t in bed, and I was able to do cognitive work without fighting through an ocean of misery.

It turns out it’s not so much the lost hours that matter (though of course they do), but the quality of the hours that are not lost. And that’s much harder to quantify.

I know what you’re thinking – yeah, but look at December. You must be feeling a lot better! Not quite. I was just on holidays. My office closed for the holidays on 16 December, and when I can spend 15 hours a week relaxing instead of doing intense cognitive work, my symptoms become much milder.

So I decided not to continue the Lost Hours Project in 2021. I’m not convinced the data is very useful, and it’s a bit depressing.

Some good news: today I jumped in the pool without hesitation and did a micro swim. If I don’t end up collapsing for several hours in the next two days, I might even do that again.

Still, I refuse to make plans or goals this January. I’m sick of it. I’m going to write a new draft of this book as fast or slow as suits me on any given day.

Actually I do have one resolution I’m very keen on, and that is to use the word absquatulate as much as possible.

Say that out loud and tell me it isn’t the most fun you’ve ever had.

It means to leave abruptly, which is something that can be worked into most conversations, even if I have to do more than my share of absquatulating to ensure I can bring it up.

Wishing you a healthy 2021.
xo

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

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.

Ep 14: Moulding stories like clay with Elizabeth Tan

Australian author Elizabeth Tan’s second short story collection, Smart Ovens for Lonely People, is full of humorous and poignant stories laced with pop-culture references and techno-slang, and set in an uncertain dystopian future or surrealities.

Elizabeth’s comedy leaps out from story titles such as ‘Shirt Dresses that Look a Little Too Much Like Shirts so that It Looks Like You Forgot to Put on Pants (Love Will Save the Day)’ and ‘Happy Smiling Underwear Girls Party’. This belies their cutting emotional depths, the varieties of loneliness depicted, and the incisive exploration of technology’s ability to isolate us while keeping us evermore connected. The book, which came out earlier this year, just won the 2020 Readings Prize for New Fiction.

In comparing Smart Ovens for Lonely People to Tan’s first collection, Rubik, Cher Tan writes: “Sardonic, gentle observations on cultural anxieties as mediated by techno-capitalism have solidified as Tan’s ‘personal brand’, but the terrain is more fantastical, more mischievous.”

One of the themes that links the stories in Smart Ovens for Lonely people is loneliness, but it’s often a special kind of loneliness – loneliness within relationships, loneliness without necessarily being alone. An affecting line from the title story sums this up: “Having someone who loves you doesn’t exempt you from wanting to die.”

Perhaps not surprisingly, loneliness competes with workplace stress, mental illness and sedentary lifestyles as one of the most pressing health epidemics of our time.

Listeners will remember our interview with Kate Leaver in episode 8, when we discussed her new book about how good dogs are for our health. In her first book, The Friendship Cure, she offers some compelling evidence for the dangers of loneliness, drawn from a meta-analysis of scientific research. It concluded: “Loneliness is more dangerous than smoking 15 cigarettes a day and deadlier than obesity … It can tighten our arteries, raise our blood pressure, increase our rates of infection, diminish our heart health, and lead to higher rates of cancer. Lonely people develop tumours faster, have weaker immune systems and lower thresholds for pain.”

We also ask Elizabeth to discuss a story from the collection in terms of its evolution from idea to final draft, which leads to a fascinating discussion of her use of a writing prompt called logogenetics.

And we discuss a whole bunch of writers, including Brooke Davis, Shaula Evans, Alexander Chee, Fiona Wright, Stephen King, Yumna Kassab, David Vann, Laura Bates, and Laura McPhee-Brown.

You can listen to episode 14 of James and Ashley Stay at Home here, or your favourite podcast app, and find out about our past episodes here.

Ep 11: Stuff it up, we want to hate this too!

In episode 11 of James and Ashley Stay at Home, we talk to London-based comedian Anthony Jeannot about getting into stand-up comedy (and what everyone says when you tell them you do stand-up), along with tips for anxiety management.

It was only after Anthony quit six jobs in four months that someone suggested he might be struggling with anxiety and perhaps should seek help for it.

Each time he took a new job, he convinced himself that he was underqualified for the role. Then he quit, found a more junior role, and started the process over.

Mental illness can be a powerful form of self-gaslighting, much like with chronic fatigue. The sick brain shouldn’t be trusted to evaluate itself, but as James points out: “If you can convince yourself (that you’re fine) so successfully that you’re convincing other people, then why would they bother digging any deeper?”

After coping with anxiety for years, Anthony felt (slightly) better prepared than most people when the covid pandemic started. We talk about the ongoing struggle of illness management, and also how gifts from Santa can set up expectations about life.

You can listen to episode 11 of James and Ashley Stay at Home here, or your favourite podcast app.

Ep 10: Progressive weakness and loss of sensation

In episode 10 of James and Ashley Stay at Home, we get real serious – or as serious as it’s possible for James and me to get.

We talk about our respective diagnoses and how these illnesses erupted in our lives. James has chronic inflammatory demyelinating polyneuropathy, a neurological disorder that’s quite rare.

CIDP has had a significant and ongoing impact on his life, but James is determined not to make it part of his identity. His challenges in even speaking about it are why it took us three separate attempts over multiple months to record this episode.

And while this episode was recorded remotely as usual, we actually got to hang out in person in Coonabarbran, proving that we don’t stay at home all the time (even if it often feels that way).

It’s been a big podcast week! Two interviews about How to Be Australian were also released.

The first, with superhost Dani Vee of the Words and Nerds podcast (which is coming up to 200 episodes), is possibly the most cross-cultural Australian/Canadian conversation imaginable, with a strong focus on the weather and spider stories.

Dani shares an excellent spider story that settles one of the great Aussie debates: whether or not hunstmans bite. She also shares a story about visiting family in the Netherlands, who announced, “We’re all going to the beach today because it’s 16 degrees!” As a Canadian I can imagine myself saying this. As an Australian, I think it’s nuts.

As someone who has grown up in Australia, it was such an insight to see how we’re perceived from the outside. 

Dani Vee, Words and Nerds episode 196

Dani also asks what is perhaps my favourite question ever: why do you write?

The other interview is with Paul Barclay for ABC Radio National’s Big Ideas.

This in-depth discussion gets into Australia’s cultural quirks, the concept of belonging, the importance of uncovering and acknowledging buried histories, and of course, the Hollywood kookaburra con.

We also talk about adulthood, and get into the core of the book: ‘Part of the process of really settling into adulthood was realising that these images I’d held in my head, the things that I’d believed were going to make me happy — were not actually going to make me happy.’ 

Paul asks a great question about my search for identity in Australia, and how it connects to a childhood spent moving around.

Something had happened that had disrupted my ability to belong. And I think that’s partly what propelled me to go live in places like South Korea and Peru and Mexico, because of course I didn’t belong there, that was obvious to everyone, and we could just move forward from that understanding.

If these conversations make you keen to get into How to Be Australian, you can get a copy now wherever you are in the world.

Order the book now from
Your local bookshop | Booktopia | Amazon | Outside Australia

Ep 9: The healing power of creativity

James and Ashley Stay at Home podcast cover quote
When we invited Karin Foxwell on James and Ashley Stay at Home, she said, ‘my work as an art therapist is the best job in the world.’

Art therapy is a creative form of counselling, as Karin describes. Her work focuses on military and emergency service personnel who live with PTSD as an after-effect of trauma incidents during their service.
Woman in art studio
In this episode, we discuss how Karin got into art therapy, why it can be so successful at treating trauma symptoms, and its potential for use in the management of chronic health issues.

Karin’s therapy program is part of The Road Home, an affiliate of The Hospital Research Foundation in South Australia, and part of the Australian Centre of Excellence for Post Traumatic Stress.

According to InDaily, “90 per cent of The Road Home’s art therapy participants report positive changes in their quality of life, relationships, general psychology, and overall symptoms related to PTSD.”
Art therapist 4.png
You can listen to episode 9 of James and Ashley Stay at Home here, and find out more information about The Road Home on their website.

 

 

Ep 8: Talking good dogs with Kate Leaver

Toddler and two shih tzus

Ted and Tiffany.jpgI’ve been a fan of dogs basically since I was born. Ted, the handsome furball on the right, was my parents’ first baby – I came along a little later. I guess they decided they’d rather have a second dog than a second child, because for a while, this was their little menagerie. (Eventually they added a second kid too.)

Ted and Tiffany were purebred show dogs, which meant their coats grew down to the floor. This photo is from off-season. I was raised with the pronunciation sheed-zoo, as per the American Kennel Club. I don’t know when people saying shit zoo, but I’d like to officially campaign for a rebrand.Kate Leaver on James and Ashley Stay at Home podcastMy love of dogs is why I’m especially excited for our latest podcast guest, author Kate Leaver. Kate is a journalist and speaker from Australia, and is also the author of two books. Good dog cover, author Kate Leaver, Bert,I’m been a fan of Kate Leaver since I reviewed her first book, The Friendship Cure. In it, she examines how friendship can help to alleviate the epidemic of loneliness, which competes with mental illness and sedentary lifestyles to be the worst health crisis of our time (pandemics aside). Friendship has powerful health benefits, as many scientific studies show.

Good Dog is an extension of that idea, exploring how our furry friends enrich our lives while providing numerous health benefits that researchers are only beginning to uncover. Along with the 11 stories of especially good dogs – including her own shih tzu, Bertie – Leaver explores research into the impact of dogs on human health. You can read my full review here. Kate Leaver on James and Ashley Stay at Home podcastJames also happens to be a fan of dogs.

James lives with Bonnie, an Irish wolfhound/dalmation cross. Bonnie joined James for our interview with Kate. The one downside of podcasts is their lack of visual component, so James snapped this shot of Bonnie nudging her way into the audio action. James and Bonnie.jpg
This shot allows you to better appreciate Bonnie’s spotiness. Dalmation Irish wolfhound cross dogJames, Kate and I probably could have talked about dogs for, conservatively speaking, 17 hours.

But we had so much more to talk about! Kate lives with bipolar disorder and her experiences with depression, and Bert’s intuitive ability to comfort her during difficult times, inspired her to research other good dogs.

She also speaks about the challenges her health has presented in her career. “I always found being in an office difficult, because you can’t really schedule in time to deal with your mood or your energy levels.” This led her to try freelancing.

“I wanted to give myself the opportunity to take care of my mental health,” she says.  Freelancing means being able to give herself more days when she needs them, work to a schedule that works for her, and go outside for a walk in the middle of the day.

Kate’s coped with chronic illness far longer than I have, so I asked her how she manages to have such a successful career. I was thankful to hear her say she doesn’t know how she manages it. She just keeps going as best she can, which is sometimes not very well at all.Kate Leaver on James and Ashley Stay at Home podcast
This was a huge relief , because after four years I certainly haven’t figured out any way of managing my illness either. Kate Leaver on James and Ashley Stay at Home podcast
You can listen to episode 8 of James and Ashley Stay at Home here, and find Kate’s book online and in bookshops across Australia, as well as in the US and UK in early 2021.

Falling victim to medical gaslighting

Triptych of an exhausted woman sleeping
Since getting diagnosed with chronic fatigue syndrome in 2017, one of the most helpful things has been learning specific terms that describe aspects of the illness.

I think this is partly because the existence of a given term is proof I’m not imagining what I’m experiencing. It’s real, and other people have experienced it – so much so that there’s an established name for that experience. A few examples are orthostatic fatigue, temperature dysregulation, and alcohol intolerance.

Recently I learned a new term that describes an aspect of my experience of illness perfectly. Disturbingly, I learned it while reading not about CFS, but about covid-19.

Despite the impression my social media accounts might give, I’m still really struggling with the fatigue. In January, I started the Lost Hours Project to try to quantify how much the fatigue still affects me. I track each hour I lose to fatigue – in other words, any daytime hour that I’m too sick to function.

Lost hours 2020
January: 89 hours
February: 110 hours
March: 119 hours
April: 87 hours
May: 63 hours
June: 90 hours
July: 60 hours

Keep in mind these don’t include time that I am functioning, but at a slower (more frustrating) speed than I would when I’m well. Often things take me twice as long as they normally would because of physical or cognitive fatigue, or both. But there’s no clear cut way to track this.

The 110 hours I lost in February are nearly 25 per cent of an average adult’s waking hours. In other words, I spent an entire week of that month in bed. (You might be thinking, gosh, I’d love a week in bed! Until you realise that I spent that week feeling like I’d been run over by a cement truck, and still had my usual work and personal commitments piling up.)

Chronic fatigue syndrome isn’t just feeling tired or run down. It’s exhaustion combined with a roulette wheel of symptoms including body aches and joint pain. I wouldn’t wish it on anyone.

Which is why I’ve been so unsettled reading about the covid-19 ‘long haulers’.

More and more articles are coming out about people suffering a long tail version of covid-19. They’ll feel fine for a few days, and then suddenly be too exhausted to work or function, with returned symptoms like shortness of breath and a hoarse throat. For others, the fatigue has settled in and not left.

“Before this, I was a fit, healthy 32-year-old,” a woman interviewed for the Atlantic said. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.”

Ugh, I know how this woman feels. I’ve been there.

“This virus has ruined my life,” she continued. “Even reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown—yoga, bread baking—are beyond the realms of possibility for me.”

An article from SBS describes a man in New York who will feel fine for a few days, then suddenly become overwhelmingly tired and short of breath.

I wasn’t surprised when the article quoted his physician saying the man’s “ongoing fatigue is similar to what has been documented in other illnesses that cause chronic fatigue syndrome.”

“Scientists aren’t quite sure why this happens, but … it might relate to an injury to a part of our cells called mitochondria, which are responsible for generating energy.”

The  physician “emphasised it was important for people experiencing these ongoing symptoms not to succumb to ‘medical gaslighting‘ where other people or the patients themselves attribute the illness to anxiety.”

“This is not in people’s heads. This is what people live every day.”

From extensive experience, it’s very difficult not to medically gaslight yourself. It’s useful to have a term for this, since I still tend to have this sort of thought distortion. I don’t necessarily attribute the illness to anxiety, but I often tend to deny how sick I actually am. Particularly if I have a few good days in a row, I start to think I can’t possibly be as sick as I’ve made out. I must be exaggerating.

But I’m not. And the covid-19 long haulers aren’t, even if they’re trying to convince themself that it must be anxiety, or even their imagination – because that would be far less frightening that the reality of having chronic fatigue.

The Atlantic reports that thousands of people are now experiencing long tail covid-19, with early surveys estimating that 60 per cent of them are aged 30 to 49.

Take care, stay safe! And if you’re sick, try not to gaslight yourself.
xo