Folks: inside chronic illness

I write for Folks magazine. They feature people living with disabilities or chronic illness, but their ethos matches mine – the stories are about who these people are, not their diagnosis. 

Here’s a selection of what I’ve written. My author profile on the Folks site has the whole list.

 

Inside the Rhymesayer’s Brain

An interview I did with musician Aesop Rock, about his lyrics, mental health, and cat Kirby. All the important things.

‘At times impenetrable, at times hilarious, almost always infuriatingly impressive: Aesop Rock, the New York-born rapper is known for his dense and complex songs, A 2014 study named his the largest vocabulary in hop-hop, surpassing 85 other major artists, as well as historic writers including Shakespeare.’ >> read more

 

Princess Leia’s Patronus

This started as an article about companion animals who help people with illness, but while I was writing it, Carrie Fisher died. And since I was writing partly about her and her therapy dog Gary, the piece became a tribute, too. >> read more

 

 

There is more in you – Danae Lee’s journey to Outward Bound

I’ve known Danae for a while, but it was awesome to write this because I got to know her a lot more.danaeandnovak She has Lupus, among other things, but is super active, and has always wanted to do Outward Bound. She thought her illness would rule it out, but Outward Bound has a course called Aspire, which caters for people with some reduced capabilities.

“The people on my course are some of the most amazing people I’ve ever met. We came from diverse backgrounds in terms of age, gender and health, but I shared so many things in common with many of them. To me this was probably one of the greatest aspects of the course; meeting people who have been through many of the same or similar struggles that I have, especially in terms of chronic illness.”

“I’m loathe to use the word ‘inspiring,’ but it was. It made me feel like; ‘We got this. We’re gonna be ok, even if we’re not ok, you know?” >> read more

 

Life on the opium couch – about Stephanie de Montalk, author of How Does it Hurt? 

“The idea of a book that would raise awareness of, and bring a degree of clarification to, chronic pain arose primarily as a result of the misunderstanding I was experiencing with my own constant pain.

IMG_0146I felt exiled, isolated, and very much aware that family, friends and even medics were uncomfortable with the subject, reluctant to discuss it. Many were reluctant to believe that chronic pain was not simply akin to a troublesome cough.

I was aware that others in pain were additionally suffering from emotional pain through an absence of validation of their physical pain, and wondered if, as a writer, I might be able to help…” >> read more

 

Pinky Fang, the artist with different eyes. Blindness doesn’t always mean you can’t see anything. 

““If you don’t inherit Retinitis Pigmentosa, it can happen to you pretty fast,” says Pinky. “But for me, it’s been a slow decline my whole life. I guess it’s a genetic lottery what type of eyes you get.”pinky-studio-4

Her art has a distinctive bold, quirky style, and she works in a wide range of disciplines, including drawing, painting, jewellery and textile design.

“I like to insert my sense of humour into my work. Nothing I do is generally too serious or meaningful – I just like to create things that people will find interesting & take some enjoyment from. I like people to laugh or smile when they see my work.” >> read more

 

 

Tiny tales on her fingertips. Anthea Whittle copes with her neurological condition by painting with polish. 

When Anthea Whittle was eleven years old, she made a deal with her piano teacher. For everanthea11y lesson that Anthea turned up with her nails cut short enough to play, her tutor would reward her with a bottle of nail polish.

“When I last tried to add it all up, it was maybe four hundred bottles?” she laughs. “But since then, gel polishes were invented and I started getting those, now I really have no idea.”Now, at 28, she’s a self-taught nail artist who’s been collecting polishes – and everything that goes with them – for seventeen years.  She’s lost count of how many she has.

Anthea has a rare neurological condition called Idiopathic Intracranial Hypertension.>> read more

“An unbreakable silver thread, woven through everything.” Illustrator and comic artist Jem Yoshioka explores her history of illness and her unique heritage through art that’s reached thousands.

“I was able to be in Japan to commemorate the 70th Anniversary of the Hiroshima bomb, which my grandmother survived. I got to spend time with my great uncles, see places important to my family and travel with my younger brother. A three week trip with so much walking would have been absolutely unthinkable as little as 5 years ago.

jematworkI am so grateful that my body has been able to recover to the point where I can walk around.

Artistically I think these trips will be feeding me for a long time. Japan is very important to me and this will be a common theme through my work, but it’s also important to know I’m not from Japan, I’m from New Zealand, and so my worldview and the work I make is different because of that.” >> read more

 

The Singer with Honeycomb Bones – Ailsa Lipscombe talks about music, moving across the world with her service dog Connie, and Complex Regional Pain Syndrome.

Ailsa Lipscombe has the words Per Aspera Ad Astra tattooed across her forearm. It’s Latin for “through hardship to the stars,” and Ailsa knows a lot about what that means.

 Photo: Stuti Sharma

Now 25, Ailsa has been in pain for twelve years. At age thirteen, she fell over at a bus stop and twisted her ankle. It was a bad injury, but it should have healed quickly. But the pain spread. Her leg became swollen, purple, and freezing cold.

It was ten months of agony before she was diagnosed with Complex Regional Pain Syndrome, a disorder that affects the nervous system. The symptoms vary wildly, from extreme skin hypersensitivity, muscles cramps and aches, and, in Ailsa’s case, slow loss of sight. >> read more

 

 

Feminism, Weight Lifting and Crohn’s Disease – Kate Montgomery fights for her body

Wearing a t-shirt that says Wild Feminist, a massive smile, and a tiny silver dumbbell around her neck proclaiming “Me vs Me,” Kate Montgomery is no one’s picture of chronic illness.

Kate Montgomery. Photo: Natalie Morgan

The 34-year old was diagnosed with Crohn’s Disease at 22. The necklace is a description of the power play between herself and her body; a fight she’s come close to losing multiple times.

Now she talks about how weight lifting has helped her recovery, and how her time in the gym and her feminism have helped build her positive self image. >> read more

 

 

Sick women, raise your fists

In these Trumpian times, how can chronically ill people engage in political activism? It starts by articulating your experience.

When I first became chronically ill, I turned to writing to cope. I wanted to rip open and lay bare all the messy painful parts of my illness, and help to educate people about the many difficulties sick people face – physically, emotionally, financially, and politically.

So how do you fight back? How do you articulate your experiences as a chronically ill person in a way that other people can understand? And how do you play a part in, or push back against, a world that can feel so hostile to you for being in pain–and not your illness for causing it–that some of the greatest political issues of our Trumpian times is whether or not healthy people should have to pay for the treatment of sick people at all? >> Read more.

Mastering Mountains with MS

Nick Allen hasn’t let multiple sclerosis get in the way of his love of mountain climbing.

It’s been two years since Nick climbed out of a wheelchair and up a mountain. It sounds like a textbook success story, but Nick says there’s a lot more to it.

I spoke to Nick about how he achieved this impressive feat, and the Trust he’s started to help others with MS get into the outdoors. >> Read more.

 

New Zealand’s blind peanut butter poet

With the help of quality ingredients and his service dog Fido, the founder of the Pic’s Really Good Peanut Butter empire hasn’t let macular degeneration get in the way of his dreams for world domination.

Pic is a people person through and through. He says the only problem with travelling with Fido is that he gets an empty seat next to him– meaning he misses out on meeting a fellow passenger

“Usually I’d have someone to chat to, which I love, that’s the reason I’m traveling most of the time. Finding people to chat to.”

With the team taking care of the business back home, Pic is free to hop about the world, selling his peanut butter to anyone who’ll listen to his story and have a taste. And plenty have. >> Read more