Category: Interview

A Journey through Chronic Pain: Heal Me by Julia Buckley

Julia Buckley can pinpoint the very moment when her battle with chronic pain began: it was a Tuesday morning in May 2012, and she was reaching across her desk for a cold cup of coffee. Although she had some underlying health issues, the “fire ants” down her arm and “carving knife” in her armpit? These were new. From there it just got worse: neck and back pain, swollen legs, and agonizing periods. Heal Me is a record of four years of chronic pain and the search for something, anything to take the pain away. “I couldn’t say no – that was a forbidden word on my journey. You never know who’s going to be your saviour.”

Having exhausted the conventional therapies available privately and via the NHS, most of which focus on cognitive behavioral therapy and coping strategies, Buckley quit work and registered as disabled. Ultimately she had to acknowledge that forces beyond the physiological might be at work. Despite her skepticism, she began to seek out alternative practitioners in her worldwide quest for a cure. Potential saviors included a guru in Vienna, traditional healers in Bali and South Africa, a witch doctor in Haiti, an herbalist in China, and a miracle worker in Brazil. She went everywhere from Colorado Springs (for medical marijuana) to Lourdes (to be baptized in the famous grotto). You know she was truly desperate when you read about her bathing in the blood and viscera of a sacrificial chicken.

Now the travel editor of the Independent and Evening Standard, Buckley captures all these destinations and encounters in vivid detail, taking readers along on her rollercoaster ride of new treatment ideas and periodically dashed hopes. She is especially incisive in her accounting of doctors’ interactions with her. All too often she felt like a statistic or a diagnosis instead of a person, and sensed that her (usually male) doctors dismissed her as a stereotypically hysterical woman. Fat shaming came into the equation, too. Brief bursts of compassion, wherever they came from, made all the difference.

I was morbidly fascinated with this story, which is so bizarre and eventful that it reads like a great novel. I’ll be cheering it on in next year’s Wellcome Book Prize race.

My rating:


Heal Me: In Search of a Cure is published today, January 25th, by Weidenfeld & Nicolson. My thanks to the publisher for a free copy for review.

 

 

Julia graciously agreed to take part in a Q&A over e-mail. We talked about invisible disabilities, the gendered treatment of pain, and whether she believes in miracles.

 

“I spent a day at the Paralympic stadium with tens of thousands cheering on equality, but when it was time to go home, nobody wanted to give me a seat on the Central Line. I was, I swiftly realised, the wrong kind of disabled.”

Yours was largely an invisible disability. How can the general public be made more aware of these?

I feel like things are very, very gradually moving forward – speaking as a journalist, I know that stories about invisible disabilities do very well, and I think as we all try to be more “on” things and “woke” awareness is growing. But people are still cynical – Heathrow and Gatwick now have invisible disability lanyards for travellers and someone I was interviewing about it said “How do I know the person isn’t inventing it?” I think the media has a huge part to play in raising awareness, as do things like books (cough cough). And when trains have signs saying things like “be aware that not all disabilities are visible” on their priority seats, I think that’s a step forward. Openness helps, too, if people are comfortable about it – I’m a huge believer in oversharing.

 

“I wondered whether it was a peculiarly female trait to blame oneself when a treatment fails.”

You make a strong case for the treatment of chronic pain being gendered, and your chapter epigraphs, many from women writers who were chronic pain or mental health patients, back this up. There’s even a name for this phenomenon: Yentl Syndrome. Can you tell us a little more about that? What did you do to push back against it?

Yentl Syndrome is the studied phenomenon that male doctors are un/consciously sexist in their dealings with female patients – with regards to pain, they’re twice as likely to ascribe female pain to psychological reasons and half as likely to give them adequate painkillers. In the US, women have to cycle through 12 doctors, on average, before they find the one to treat their pain adequately. There are equally shocking stats if you look at race and class, too.

I did absolutely nothing to push back against it when I was being treated, to be honest, because I didn’t recognise what was going on, had never heard of Yentl Syndrome and thought it was my problem, not theirs. It was really only when I met Thabiso, my sangoma in South Africa, that I felt the scales lift from my eyes about what had been going on. I make up for it now, though – I recently explained to a GP what it was, and suggested he be tested for it (long story, but we were on the phone and he was being incredibly patronising and not letting me speak). He hung up on me.

 

“In my head I added, I don’t care what they do to me, as long as it helps the pain.

Meatloaf sang, “I would do anything for love, but I won’t do that.” Can you think of anything you wouldn’t have done in the search for a cure?

Well, I refused a spiritual surgery from John of God – I would have had the medical clamp up my nose or happily been cut into, but I was phobic about having my eyeball scraped – I had visions of Un Chien Andalou. So I had said repeatedly I was up for the other stuff but wouldn’t do the eye-scraping, and was told that probably meant I’d get the eye-scraping so I should go for the “invisible” surgery instead. But I can’t think of anything else I wouldn’t have done. The whole point, for me, was that if I didn’t throw myself into something completely, if I didn’t get better I’d never know if that was the treatment not working or my fault. Equally, my life was worthless to me – I knew I would probably be dead if I didn’t find an answer, so I didn’t have anything to lose.

Having said that, I know I would have had major difficulties slaughtering a goat if I’d gone back to Thabiso – I’m not sure if I could even have asked anyone else to do that for me.

 

Looking back, do you see your life in terms of a clear before and after? Are you the same person as you were before you went through this chronic pain experience?

There’s definitely a clear before and after in terms of how I think of my life – before the accident and after it. The date is in my head and I measure everything in my life around that, whether that’s a work event, a holiday, anything else – it’s always XX months/years before or after the accident. I don’t have the same thing with the day I got better because I try not to think about what happened and why, so I still calculate everything around the accident even though I should probably try and move my life to revolve around that happier day.

Largely I’m the same person. I still have the same interests and the same job, so I haven’t changed in that way. But I’d say I’m more focused – I lost so much of my life that I’m trying to make up for it now. So I don’t watch TV, I don’t go out to anything I’m not really interested in, I didn’t go to the work Christmas party because I could think of better things to do than stand around sober shouting over music … so I’m more ruthless about how I spend my time.

I also think invisible illness – or people’s reaction to it – hardens you. You have to grow a shell, otherwise you wouldn’t get through it. So I’m probably more brusque. I’m also really fucking angry about how I was treated and how I see other people – especially other women – being treated and I know that low-level anger shows through a lot. But as I said to a friend (male, obviously) recently, when he read my book and was upset at my anger: once you start noticing what’s going on, when you see people’s lives ruined because of pain, when in extreme cases you see women dying because of their gender, how can you not be angry? I think we should all be more angry. Maybe we could get more done.

 

You got a book contract before you’d completed all the travel. At that point you didn’t know what the conclusion of your quest would be: a cure, or acceptance of chronic pain as your new normal. Given that uncertainty, how did you go about shaping this narrative?

For the proposal for the book I did a country-by-country, treatment-by-treatment chapter plan (it was wildly ambitious, but pain and finances put the dampeners on it) and suggested the last chapter would be at a meditation retreat in Dorset, learning acceptance. I put in some waggish comment like “assuming I don’t get cured first hahaha”, but secretly I knew there was no way I could write the book if I wasn’t cured, partly on a very literal level – I physically wouldn’t be able to do it – but more because I didn’t see how I would ever be able to accept it. I actually postponed the deadline twice for the same reasons, and when I realised deadline 3 was looming and I wasn’t better and I was going to have to suck it up and write it I was distraught. I genuinely thought that putting all that I had been through onto the page and having to admit that I had failed – and failed my fellow pain people I was doing it for – would kill me. So I don’t know what I would have done if it had come to the crunch; luckily I got my pot of white chrysanthemums and didn’t have to see what happened.

 

You are leery of words like “miracle” and “cure,” so what terms might you use to describe what ended your pain after four years?

Something happened, and it happened in Brazil. But I would never tell anyone to hop on a plane to Brazil. What happened to me happened after four years of soul-searching and introspection as well as all those treatments. If I’d gone to Brazil first, I don’t know what would have happened.

 

Who do you see being among the audience for your book?

I’d love people who need it to read it and take what they need from it, but I’d also love doctors to read it – as an insight into patient psychology if nothing else – and I’d love it to be seen as a continuation of the whole #MeToo debate. That sounds holier than thou, and obviously it’d be great for people to read it as a Jon-Ronson-meets-Elizabeth-Gilbert-style romp because I’d feel like I’d succeeded from a writing point of view, but to be honest the only reason I wanted to write it in the first place was to show what’s happening to people in pain, and once I got better, the only thing that mattered to me was getting it into the hands of people who need it. I know how much I needed something like this.

Review and Q&A: Unruly Creatures by Jennifer Caloyeras

The 11 stories in Jennifer Caloyeras’ new collection, Unruly Creatures (released on October 3rd by West Virginia University Press), feature characters who find themselves in extreme situations and/or are let down by their bodies. Often, their tentative steps outside their own problematic situations involve making unexpected connections with the animal world: a neglected boy learns from a taxidermist, a trainer at the Institute for Privileged Primates is surprised by the depth of her feelings for one of the gorillas in her care, a woman who has just had a double mastectomy empathizes with a cow stuck in the crater left by a crashed meteor, and two teens realize they can only bond with their father when in animal costumes.

I appreciated the variety of forms and voices here. One story set in a dystopian future has an epistolary element, including letters and memos; two others use second-person or first-person plural narration, respectively. There’s also a lot to think about in terms of gender. For instance, one protagonist frets about out-of-control pubic hair, while another finds it difficult to maintain her trans identity on a male prison ward. “A Real Live Baby” was a stand-out for me. Its title is a tease, though, because Chloe is doing the Egg Baby project in school and ‘babysits’ for her delusional neighbor, who keeps a doll in a stroller. The conflation of dolls and babies is also an element in recent stories by Camilla Grudova and Lesley Nneka Arimah – proof, if we needed it, that modern motherhood is both an enigma and a work in progress.

I’d recommend this story collection to readers of Margaret Atwood and Karen Joy Fowler – and to book clubs. You certainly won’t run out of things to discuss!

My rating:

 


Jennifer kindly offered to take part in a Q&A over e-mail. We talked about eco-lit, fairy tales gone wild, and how writing and marketing short stories is different from novels.

 

Animals take on a variety of roles in these stories: research subjects, art projects, friends. Are you an animal lover? Or was that linking theme incidental? And what did you hope to convey about the ways the human and animal worlds intersect?

I am an animal lover. I always have been. When I was younger I really wanted to be a marine biologist. I couldn’t quite get around the math. Then for a while, I thought, animal psychologist. I’ve always been obsessed with animals and animal behavior and the ways in which humans are constantly distancing themselves from animals and their behavior. We have a bit of an unfair superiority complex when it comes to the animal world. I ended up going down an entirely different path (musician and singer) before applying to graduate school for a MA in English and then a MFA in creative writing.

Jennifer with her dogs. Photo by Gene Fama.

But to get back to your question, I didn’t set out to write a collection of linked animal stories; that ended up happening organically. I like to use animals as a mirror or lens through which we see ourselves: sometimes at our worst, most instinctive behavior – sometimes at our best. I think an apt metaphor is that of child staring at an animal at a cage in the zoo, internalizing the thought, “I am nothing like that animal. I am everything like that animal.”

 

Sometimes the humans are the truly unruly creatures – thinking especially of the obnoxious plane passenger in “Airborne” and Ernest, the persnickety postman in “Big Brother.” How does placing them alongside animal characters point up their flaws?

I am a huge fan of unlikable and unreliable narrators. And I think the short story genre lends itself to utilizing these types of narrators, because you don’t have to sustain this for the duration of an entire novel. In “Big Brother”, the reader aligns with everyone else in the story, not the protagonist. Ernest can’t get over the fact that Les, his co-worker, could have such a bond with a parrot, when Ernest has such a difficult time connecting with anyone, yet in the same story, Ernest’s earnest love for his dog is apparent. He has the key to connecting with people, he just doesn’t have the means to put this knowledge to use.

 

“H2O” imagines a future extreme drought situation in which only the elite can afford fresh water. Does this feel like a plausible scenario, especially where you live in California?

Oh, the water situation is really scary. I don’t think we’re far off from the scenario presented in this story. It’s always absurd to me when we hear about drought conditions and yet, here I am, driving by a huge verdant golf course. And the access for the wealthy in this particular story resonates in terms of access in general in a capitalistic society. In the story, which is a sort of eco-lit satire (I think I just made up that genre), water is the most coveted commodity, yet it’s marketed differently depending on economic status. Living in Los Angeles, there seems to be a production value to everything here, so I wanted to add that twist in the story – the commercialism of a commodity – how it would be talked about on a production set. How to do the perfect “hard sell” when it comes to water.

 

I especially love the fairy tale-gone-wild mood of “Unruly”: Caroline loathes the Rapunzel-like abundance of her pubic hair, and instead of a glass slipper we get glass shards in Tom’s arm. How does twisting a fairy tale play with readers’ expectations for a story?

I’ve always been obsessed with fairy tales. My second young adult novel, Strays, has a whole component where a high school English teacher introduces 16-year-old Iris, the protagonist, to Angela Carter’s The Bloody Chamber (if you’re a fairy tale fan, you have to read this one!), which is a feminist reinterpretation of fairy tales. I love how familiar all the fairy tale tropes are. I love the use of magical realism in fairy tales and I love the idea of playing with a familiar and predictable story and undercutting the reader’s expectations. To that end, I recently read (and loved) A. Igoni Barrett’s Blackass – which was a retelling of Kafka’s Metamorphosis. But instead of waking up as a cockroach, in this version – a black man in Lagos wakes up as a white man, afforded all of the benefits of white privilege. As a reader you’re thinking, “I know the story, but I don’t know this story.”

The story “Stuffed” was also inspired loosely by the fairy tale of Hansel and Gretel. The witch in the woods is replaced by a taxidermist (who is not evil) and instead, things with the child go dark pretty quickly.

 

Occasionally ersatz creatures are on display: doll babies, taxidermied animals, or animal costumes. What are we to make of that gulf between the real thing and the false one on display?

Surrogates are some of my favorite things to explore! I took a deep dive into the world of taxidermy while doing research for “Stuffed”. I really couldn’t get enough. I remember as a child getting lost for hours in the Hall of Mammals at the Natural History Museum in Los Angeles. I think, for me, it’s the idea of creating something to replace something, but the replacement is complete artifice. In terms of taxidermy, essentially, you are replacing death or recreating death to imitate life. A real dead animal is ugly, sunken, decayed. But we have these artists who take death, stuff it with synthetic material, replace eyeballs with beads and you have a recreation of an animal that sometimes looks better off than a live version of that animal. A lot of what is explored in these stories is a stripping down to raw human behavior. People hide behind the masks and costumes and artifice, but placed in certain situations, their animal instincts will always emerge.

[See also my review of the taxidermy-themed English Animals by Laura Kaye.]

 

Can you remember what the seed was for some of these stories? A particular line, scene, image, or character? Do you start writing a story with a title in mind, or does the title usually suggest itself later on?

Titles always come last for me. Always. I can’t name a thing until I know what that thing is. Writing is such a process and oftentimes I won’t end up where I think I’m going when I’m writing a story. They always surprise me. “Unruly” (the story of the pubic-haired Rapunzel) came directly out of this vivid dream I had when I was pregnant with my first child. I dreamed that I was naked with long flowing hair everywhere and a squirrel came out of a tree, nipped off a chunk of my hair and ran back to her nest and wove the hair into the nest. I remember waking up hysterically laughing. In hindsight it was such an obvious fertility dream; for the sake of the story, I made it a representation of coming-of-age/adolescence – a time where one’s body feels out of control, but I took it to the next level.

Photo by Gene Fama.

“The Sound of an Infinite Gesture” came directly from Koko the signing gorilla. It’s amazing that a gorilla can use sign language and communicate, but there was also something odd about people putting these very human ideas on a gorilla (remember they got her a pet kitten? And now I see they have her signing PSAs to save the environment?), so I started ruminating on what if we took this idea further – the gorilla communicates so well with her trainer that they begin to develop intimate feelings for one another.

Stories will often come out of an article I read (how leeches are being used in modern medicine led to “Bloodletting”) or from a friend, “Hey, did you know that people go to furry parties where they dress up in costumes and hug one another?” which led to “Plush” and I start playing around with what that might look like. It’s a lot of imaginative play involved. That’s my favorite part of writing – that dreamy time before I actually sit down to type – when it’s all just floating around my head and I’m trying to make a movie of it in my mind.

 

You’ve previously written YA novels. How different was the experience of writing these short stories? Do you see this work finding a dissimilar audience?

Writing a short fiction collection is not for the faint of heart. I was actually shocked at how slim the collection looked when it arrived in the mail. I kept thinking, “but I did all that work!” Each story, in a way, is treated like a novel. And I’m not talking just about the structure from beginning to end. Every word in a short story is precious; you have to economize. And, in order to get momentum for the collection, you want to publish stories from the collection in literary journals, which takes the same amount of energy and query letters that sending out your novel to an agent or publisher takes!

The audience for this book is completely different than the 13–17 demographic of the two other books. I have had a few people say, “Oh I bought your latest book for my child” and I’m quick to say, “it’s not for kids!” But read at your own risk.

 

Who are some of your favorite writers? Who has inspired your prose style or your story strategies?

I have so many favorite writers! And I read across all genres. It’s hard to say exactly who has influenced my work, but I will share my favorites! I love Lorrie Moore’s Birds of America. I think she is the best at synthesizing humor and pathos in the same space. I strive to do this in my stories. Pastoralia by George Saunders is another favorite collection. He is a master storyteller, satirist, humorist and his stories bring me to my knees from emotion in unexpected ways. I love Aimee Bender’s use of magical realism. I recently read Ottessa Moshfegh’s Homesick for Another World and loved it! There are so many amazing and varied voices when it comes to contemporary short fiction! The faculty member I worked closely with at the University of British Columbia when I was working on my MFA in creative writing was the Giller-nominated writer, Zsuzsi Gartner. In addition to being an incredible writer herself, she opened up the world of endless possibilities in short fiction, which was incredibly liberating.

 

What are you working on next?

Last year, I was selected as the writer-in-residence at the Annenberg in Santa Monica and I began working on a contemporary novel about expectations and parenthood. I’m still working on it and hope to be finished by the beginning of the new year. (Now that it’s in writing, maybe I will be further motivated!) I was pretty sure that I was done with short fiction for a while, but then ideas started coming to me again, so it’s my job to listen.

I also teach writing at UCLA Extension’s Writers’ Program. I will be teaching a new course, “Writing the Young Adult Novel”, in the winter and my usual “Intro to Short Fiction” in the spring. The classes are online, so if any of your readers are interested, sign up!

I spend a good amount of my time editing and helping to develop manuscripts and stories for clients. So it’s a nice balance between writing, editing and teaching.

My father, screenwriter Ron Clark, and I are toying with starting a podcast. Stay tuned!

 

Other places to reach Jennifer on social media:

Facebook Author Page: Jennifer Caloyeras

Twitter: @Jencaloyeras

Instagram: JenniferCaloyeras