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Why Facebook Diets And Chronic Illness Don’t Mix

That latest fad diet lighting up social media might be good for healthy people, but for a person with a chronic condition, it's a lot more complicated.

If I had a dollar for every time I’ve been told that a certain diet will cure my incurable autoimmune disease, I’d be a very rich woman. I’d still be sick, but at least I’d be rich.

“Eat fermented foods!” “No don’t, they’re difficult to digest, you need to stick with everything raw, especially raw milk,” “Don’t eat dairy! You’re definitely lactose intolerant,” “You should do the keto diet, it’s just all meat and all dairy, fat is good for you,” “Fat is definitely not good for you, and anyway aren’t you vegetarian? You should just eat vegetables and air.”

Like every person with a chronic illness, I’m constantly bombarded with often conflicting advice about curing myself through often absurd dietary choices. And these days, more often than not, it happens over Facebook, or other social media platforms.

Spoiler alert: I cannot cure my arthritis by eating lettuce and anchovies every second Tuesday, and neither can someone with Crohn’s Disease, or diabetes, or Multiple Sclerosis.

Spoiler alert: I cannot cure my arthritis by eating lettuce and anchovies every second Tuesday.

I’m not saying that changing your eating habits won’t make any difference at all. In a lot of cases, it can. But generally, fad diets and chronic illness don’t mix. When it comes to food, there’s a lot of decision-making that healthy people don’t see. There’s a lot of weighing things up.

When I got first sick, I suddenly couldn’t tolerate things I’d eaten my whole life – garlic, onions, anything spicy, anything with a lot fibre, fermented foods, the deadly nightshade family which includes potatoes and tomatoes, and most processed products. Because I’d had an infection in my stomach that left it constantly inflamed, anything that irritated it caused me pain.

Now, five years down the track, I’m able to eat some of those foods in very small amounts. Inflammation in my stomach isn’t as much of an issue. Unfortunately, it didn’t go away: it spread into my spine, and triggered the gene for Ankylosing Spondylitis. So I developed the inflammatory autoimmune arthritis I have today.

This is what causes me widespread pain, and if I eat the wrong thing, that pain will get worse, not just in my stomach, but in my shoulders, spine, and pelvis. Therefore, like most sick people, I take my diet pretty damn seriously. Despite this, though, the well-meaning tips keeps rolling in. It’s almost like people think those of us with chronic conditions don’t have Google.

The problem with such well-meaning advice is that none of these fad diets are as accessible as they sound, especially if you’re sick.

It’s almost like people think those of us with chronic conditions don’t have Google.

Most fad diets require a person to go all-in. First, they’re often expewnsive, which a person who is chronically ill–and therefore, unable to work–might be even less able to afford than people who are well. They’re designed around what a healthy person can do or eat, not the unique circumstances of someone dealing with a condition. They also often affect energy levels, at least at first, and these crashes can be particularly destructive for chronically ill people, who are often already struggling to make it through the day.

I’ve definitely tried my share of specialty diets. The first one I tried was one that restricts difficult-to-digest sugars, called FODMAPs. This diet requires you to cut back on an enormous list of foods, including things you wouldn’t normally consider sugar, such as some vegetables, dairy products, baked goods, and even pickles. I went into that diet in good faith, but my budget, energy, and pre-existing food restrictions all ended up getting in the way. Eventually, I had to quit: I just couldn’t get a good nutritional balance. And one way or another, that’s been true of every diet some well-meaning person has recommended to me since.

Earlier this year, after five years of struggles, I finally went to see a private nutritionist. The experience was revelatory. It’s not that I haven’t had professional advice over the years about my diet. I’ve seen doctors, specialists, dieticians, but they were all very focused on what I shouldn’t eat. My nutritionist was the first person to tell me what I should. She asked me about my medications, and asked me what I was currently eating. Then, when we were done, she took down a book on the Mediterranean Diet from her shelves, which relies heavily on vegetables, legumes, whole grains, meat, and fish. There’s a few things in the list I can’t have, but this is the closest thing I’ve found to a healthy way of eating, while still making room for my illness.

There’s only one person I listen to about my diet, and it’s not you, it’s not Mark Zuckerberg… it’s my nutritionist.

So no offense if, these days, there’s only one person I listen to about my diet, and it’s not you, it’s not Mark Zuckerberg… it’s my nutritionist.

I know your advice is well-meaning, and maybe that a particular diet worked for you, but if you don’t have my chronic illness, your advice might as well be coming from another planet. The latest fad diet lighting up Facebook isn’t going to make me well, and as hard as dieting is for anyone, for people with chronic illnesses, it’s even harder. The best thing for healthy people to do, to support their sick friends, is offer advice only when asked…

And bring the chocolate, where applicable.

Profiles

The Sexpert Helping Bring Self-Love To Everyone

People with disabilities or illness need as much comfort as anyone, and maybe more. That's why Alice Jones, who has inflammatory arthritis, has made it her mission to talk openly about sex toys.

“We need to talk about masturbation!” says Alice Jones. Having worked in an online sex store for a year, she’s something of an expert, so I’m all ears.

Alice Jones. Photo: Ashley Church

Alice is passionate about helping people find the right sex products for them, which includes people with chronic illness or disability. I asked if she helped many people who fall into that category, and she replies “Definitely.”

“Often it’s not a disability you’d think of straight away, or an obvious physical one. But people need and want sex aids for all sorts of different reasons. There can be stigma around disability and sex, like maybe people don’t think people with disabilities want or have sex. But I can tell you that disabled people have sex lives just like anyone.”

Alice’s own experience of pain helped give her an insight into what customers might need.

I can tell you that disabled people have sex lives just like anyone.

“I have Ankylosing Spondylitis, or inflammatory arthritis,” she says. “I was diagnosed in my late teens, after years of symptoms.”

“Sometimes it was so bad, I’d just be writhing around on the floor. I can remember my mother taking me the emergency room. They said that maybe I’d dislocated a hip, but they didn’t really know what was wrong. They gave me some crutches and sent me on my way.”

Jones at home, pouring tea. Photo: Ashley Church

It was several years of this before she finally got a diagnosis, and began treatment with the immunosuppressant Humira. Alice injects the drug herself every two weeks. Each shot is worth about US$1400, but it is subsidized in New Zealand, where Jones lives.

“I’m so lucky that it works for me,” she says. “I sometimes feel… not like a fraud, exactly, but when I talk about having arthritis, I have to remind myself how bad the pain once was, because that’s not my reality right now.”

Having the disease under control means Alice has been able to pursue a career in advocacy and more recently in customer service and marketing.

“I worked for a mobile health start-up for a couple of years as a Community Manager, of public social media as well as private patient communities,” she explains. “I then pursued a role in sex toy retail because the industry really intrigued me, and I was also interested in navigating a social media presence for a sex toy company.”

“I love the conversations that work enabled me to have both professionally and in my personal life. I used to be so prone to blushing over anything to do with physical intimacy, and now I’ve been on Facebook Live talking about masturbation and butt plugs for goodness sake.”

Alice Jones overlooking Wellington. Photo: Ashley Church

I used to be so prone to blushing over anything to do with physical intimacy, and now I’ve been on Facebook Live talking about masturbation….

She says that role not only increased her confidence, it gave her the opportunity to explore her interest in sex and disability.

“While I initially joked with friends a bit about how my experience working with patients could transfer over to sexual health, that actually turned out to be very accurate.”

“When people think of sex toys, many of them will immediately picture dildos, or maybe a basic vibrator,” Jones explains. “But there are so many more options. For people with physical disabilities or limitations, there are hands-free vibrators and masturbators, position aids like wedges and harnesses, and products to help those with erectile dysfunction. I’ve helped people who had mental limitations themselves or were caring for someone who does, either to find a suitable vibrator or masturbator to help satisfy themselves, or sometimes to find a life size sex doll –which obviously satisfies a deeper human need for a sense of intimacy than just an orgasm, and something I’m incredibly respectful of and sensitive to. Yes, inflatable dolls are good laugh, and some of their branding is pretty vile – but chatting to a customer about needing an inflatable doll to cuddle up to, it’s a little heartbreaking to hear to be honest, but also kind of wonderful that with online shopping customers can get those products easily and discreetly.”

Jones strokes her cat. Photo: Ashley Church

However, she says there are some conversations that need to take place more publicly, which is part of the reason she’s working on a secret new project, to be launched in the next few weeks.

“I’m excited to be able to write more in depth about sexuality and sex toys, without a pseudonym or a commercial interest.”

Sexual health just isn’t talked about enough… And disability or illness can add another layer to that.

“Sexual health just isn’t talked about enough. It’s ridiculous to have any kind of stigma around it, because most people are doing it, or wanting to, whether it’s alone or with their partner or partners. And disability or illness can add another layer to that. Fatigue and pain can impact on what you can do or feel like doing. If your body changes because of your disability, that might affect you. Medication is its own minefield: it can change your body, your libido, your confidence.”

Alice says while she’s become more open about sexuality, she’s found it both fascinating and disheartening how reluctant we are as a society to talk about it.

“I’ve dealt with so many customers who were understandably nervous to discuss their sexual needs and seek advice, especially those who had disabilities to consider… and if it’s that difficult to approach those who are talking about sex openly all day long, just imagine how much more challenging people find it to broach those topics in a clinical setting, with their GP or specialist.”

This is not the first time Alice has acted in what can be seen as an advocacy role. At twenty, she co-founded the nationwide group Super Young Arthritics, which focused on supporting young people with arthritis and raising awareness about the disease.

“I think things have changed since then,” she says, “but as a young person with arthritis – there wasn’t much for us, in terms of information or support. People still have this idea of it as an old person’s disease.”

In fact, arthritis is the single greatest disability in New Zealand. More than half a million people are affected by arthritis during their lifetime, and at one any one time, 1000 children and young people under the age of twenty are affected.

Medication is its own minefield: it can change your body, your libido, your confidence.

Alice says her symptoms were at their worst during the time when most people are exploring their sexuality, but while that presented some challenges, she doesn’t feel like it had as much of a negative impact as it could have.

“I guess maybe there were specific things I couldn’t do because of joint pain and stiffness, but fortunately I don’t think it ever prevented me from having a good sex life, and orgasms are pretty wicked painkillers!” she laughs.

“I vaguely recall there being some euphemistic reference to sex amongst the pages of pain scale questions I filled in before specialist appointments, but I definitely think that even if my joint pain had been having a big negative impact on my sex life it’s not something I would have thought to discuss in a clinical setting then,” Jones continues. “I wouldn’t have seen it as a relevant issue that needed to be considered in my treatment. Being able to work and sleep were the only things I considered priorities.”

She’s grateful that her condition is under control now, but being conscious of the fact she has Ankylosing Spondylitis “for life,” and that it could flare up at any time, makes Alice grateful for what she gets to do now, and that she can use her past experiences to inform helping others.

“I don’t I tell people about it all the time,” she says. “But I do have that insight, and that awareness. And that can be really useful.”

Profiles

My Aunt, The Super Artist

For Katherine Kerr Allen, arthritis was just another reason to evolve her art.

For painter Katherine Kerr Allen, creating an art-centered life has called for an ever evolving engagement with the physical world and her body.

Her first memory of “art” is from childhood, sitting on the wet earth making mud pies. Back then, there were almost no limitations, except that of the materials available, and the ways she had learned to use them.

Of course, she acknowledges, that wasn’t exactly the most unique phase of her career.

“It’s sort of like painting rocks,” she told me with a wry smile, “A lot of people draw from that well … But from that early time on, the materials and their tactile qualities were always what I loved.”

A moment of disclosure here: Allen is my aunt. For years, I’ve admired her artistic talents and the ease with which she seems to be able to turn anything she touches into a thing of beauty. She does it everywhere — whether we’re cooking Christmas dinner or tie dying t-shirts for the Fourth of July. Her house in the Maryland woods is a work of art, too, decorated with vintage family heirlooms, quirky accents and her own creations. Her studio, a bright and airy barn at the beginning of the driveway, is hung with her finished canvasses and paint-splattered works in progress. Even the way she dresses is artful, intentional and unique. There is always a pair of brightly colored eyeglasses, a gigantic piece of jewelry that resembles a statue more than a necklace, or some other wardrobe item that distinguishes her when she walks into a room. She reminds me that every choice we make can, in some way, be a form of creative expression.

Something had changed. Her paintings were more open, the colors more brilliant. I loved the way her new pieces looked.

Allen and I sat down at a cafe in San Jose, California last month to discuss her recent work, her artistic pursuits and the way they have changed over time. When I visited last winter for the holidays, I had ample time to look at her work. Something had changed. Her paintings were more open, the colors more brilliant. I loved the way her new pieces looked. When I asked her about them, she told me that the change had arisen out of necessity. Over the years, she’s developed Arthritis. As it’s gotten worse, she’s responded by changing the way she uses her most important tool: her body.

Allen grew up in Oklahoma City, Oklahoma in the 1950s and 60s, in a neighborhood with plenty of space for playing outside. After her initial forays into the worlds of rock painting and mud pies, my grandparents noticed that she had a knack for drawing and sent her to art classes with her aunt. And it was in that unusual environment, surrounded by mature ladies, that my aunt began learning how to use her eyes and her hands to create works of lines and colors that allowed her to express something about the world around her.

An art lover admires “Dive into Dreaming”

“It was basically all older ladies and me, the only child in the class,” she said. At the time, painting vases of flowers was very much in vogue among her older classmates, she joked. So after Allen painted a horse head — her own idea — she “succumbed to peer pressure” and began painting flower vases, too. She was good at it, and the ladies in class praised her. Her aunt hung her flower vase painting on her wall.

When it comes to having a wealth of artistic aunts, Allen hit the motherlode. Along with her aunt who loved painting, she was exposed to the work of another aunt who worked with sculpture. When Allen saw what she was doing, she became enthralled and set her sights on being a sculptor, too. It was, in some ways, a return to her early, tactile experiments molding mud as a child. She discovered that she was good at imagining objects in space — thinking about the way they’d fit and work together.

After getting a general art education by studying “every art medium under the sun” as an undergraduate at Colorado College, Allen went to Cranbrook Academy of Art in Michigan and enrolled in their graduate sculpting program. Being there, living and breathing sculpture night and day, Allen began to realize just how few women sculptors there were. Part of it, she said, had to do with the intense physicality of the discipline.

They stopped and looked at me and I stopped and looked at them, and then we all just went back to practicing our welds.

“When I walked into my first welding class, it was all men. They stopped and looked at me and I stopped and looked at them, and then we all just went back to practicing our welds,” she said. As she learned some of the more masculine aspects of the trade, Allen found that though they were physically challenging, she could absolutely do them.

So Allen persisted, and began making feminist art and large installations.

“I was working with metals and very ‘macho’ materials,” she said. “So I was looking for a way to counter or react to that.” One of her favorite pieces was a giant outdoor sundial that could be experienced by walking through it.

After school, Allen began making large public installations. Many are still around, including “Facing Circles” at the University of Boca Raton, Florida, outside of the Social Sciences building.

That sculpture, built in 1993, contains two crescent shaped forms that look like couches. Each one has the impression of a body in it — one male and one female. The two shapes represented typical male and female gender ideals. The idea, Allen said, was that people could sit in the impression and see how they measured up. The piece was a commentary on the way we try to fit gender stereotypes, she said.

But after graduation Allen started to noticed things she didn’t like so much about sculpture. Large-scale public pieces often involved years-long processes between conception and installation, and by the time it was completed, she had already been itching to move on to new projects for months. And, even though it was years before she developed arthritis, Allen began to realize that sculpture was taxing her body in a way that she likely couldn’t abide forever.

 Allen began to realize that sculpture was taxing her body in a way that she likely couldn’t abide forever.

“There was always a lot of pouring concrete, cranes, lifting… at some point I realized, ‘This is unsustainable,’” she said. “Because one of the reasons why I wanted to be an artist was so that I wouldn’t have to retire from my work — ever,” she said.

So in the late 1990s, Allen decided to take a break from business as usual. She put her sculpting practice on-hold and signed up for a quilt making class at a local shop. It was just for fun, she reasoned, a break from her work that would help her get re-inspired.

“It was great,” she said. “After that, I stopped making anything else. I saw that I could incorporate everything I had learned up to that point into quilting. I brought in ideas from painting, graphic design, photography, sculpture — because quilts are actually like very flat sculptures.”

In quilting, Allen also saw a practice that was less taxing on her physical body. It was one she could conceivably do as long a she made art — in other words, for the rest of her life.

“First, you can quilt indoors, so you can do it year-round. Obviously there were problems doing that with sculpture where you’re out in the sun or rain. And, you can do it sitting down.” But that wasn’t all, Allen said, after being a sculptor for so long, diving into quilting felt like “the ultimate feminist experience.”

Smaller works show the style Kerr Allen was working with several years ago, when her work was heavily influenced by the marshlands of Florida.

After Allen learned the rules of quilting, she began to break them. Quilts have straight edges. They’re typically flat, made from fabric that’s often sourced from someone else. They’re usually based on visual and geometric patterns. But Allen began bringing in techniques from painting and sculpting. She began to silkscreen the fabrics, to make her own fabric colors and designs. She stitched non-geometric shapes, like the blades of grass that grew near her old home in Fort Lauderdale, Florida, or images of adults and children that appeared to jump out from the background. She broke with tradition and told linear stories with the images, even writing. People are more familiar with paintings, which typically get more recognition than quilts, so she began making quilt/painting hybrids.

“It’s easier to begin with someone’s idea of a painting and stretch that (into a quilt) than it is to begin with their idea of a quilt and try to expand that,” she said.

Inspired the natural environment surrounding her homes in Florida and Maryland, Allen stitched and painted narratives about the world around her.

Then, in recent years, Allen again found herself making new artistic decisions based on her body. The silk screening technique she had developed to paint her fabric had begun to feel unsustainable.  She was beginning to have arthritis flare ups more often, and realized that if she was going to keep creating art for years to come, she needed to modify her style once again.

“Arthritis is something that I am aware of almost on a daily basis,” she told me.

Arthritis is something that I am aware of almost on a daily basis.

“(At the time) I thought, ‘What can I do?’ And I just let the seed germinate in my head.” So Allen started to change the way she was working. She started to move away from the intensive silkscreening technique and the demanding hand stitching that she’d been doing for years, because those involved repetitive motions that caused the Arthritis to flare up. When it did, she’d calm it by switch to machine sewing instead of hand stitching, or she’d start painting or designing to give herself a break.

Soon, Allen had developed a new way of distributing paints on the fabric and canvas. Using water, she allowed the paints to separate and spread as they wanted to naturally, a thing she calls, “letting the materials speak.” The technique gave birth to a new phase of her work, the one that caught my eye. The colors are bolder, the “brush strokes” more unbridled and wild. Each piece has evidence of the artist’s hand and the serendipity of the moment it was created.

At Allen’s latest show in the Los Altos Hills, CA Town Hall, it was clear that viewers responded to the new paintings.

A sign guides visitors to Allen’s show, “Reflections on Water” at the Los Altos Hills, CA town hall in March.

“I feel like I can look at your pieces and understand them without asking any questions,” one woman told Allen before she left. Allen said that was important to her — as important as it is for her to maintain peace and balance between the work she does and the way she can take care of her body.

“Now,” she said, “I’m able to really use my body and my materials to make something large without having to be as strong and without having to force anything.”

Allen told me that she’s been able to look at Arthritis as something that pushed her to take a new direction in her art. It’s been important to look at it that way, she said, as something that pushed her forward towards something, instead of something that held her back from doing what she wanted, something that she couldn’t control.

“It’s important to think about my choices as an evolution — moving from one thing to another — rather than an abandonment of some part of your life. So my choices weren’t a retreat. I was going on to something, going back to concentrate on the materials I love,” she said. “I’ll see where it takes me.”

My choices weren’t a retreat. I was going on to something, going back to concentrate on the materials I love.

Allen’s perspective makes me think of a painting that hung in her show — my favorite one. On a white canvas, a brilliant red sun bled into gold. Globs of orange red spill off the orb like melting sunshine. It strikes me that the way Allen looks at Arthritis, with the pain and the limits it imposes, as something inspiring, something catalyzing, bears a resemblance to that painting. When she showed it to me, Allen explained that she didn’t add any red or orange paint to the canvas. Those colors were already in the gold paint, but needed to be drawn out with the new technique she’s been using. It’s that same alchemical principle. She’s made something beautiful and unexpected out of something common. And in the process, she’s become a braver, more dynamic artist.

Q&As

The Arthritic Six-Year Old Grows Up

Trish Harris was diagnosed with Juvenile Rheumatoid Arthritis when she was only six years old. She writes about her life in a new memoir.

“When I was a teenager, I can remember fantasizing that someone would ask me how much pain I had. ‘I’ll tell you every time it hurts,’ I’d say. Then I’d say ‘Now.’ ‘And now.’ ‘And now.’ All I’d ever say was ‘Now.’”

Trish Harris. Photo: Amanda Keogh

Now at 54, Trish describes her disease as having “burnt itself out,” and she no longer experiences that intense, ongoing pain.

The Walking Stick Tree is the story of how that came to be; an episodic journey interspersed with critical essays about pain, loss, identity and body and soul.

“I hope my book connects with other people’s stories,” Trish says. “Even if the circumstances are different, often the emotional story is similar.”

Getting at the nature of chronic pain, tapping it’s source in a way that resonates with readers, can be incredibly tricky. Trish describes it as a “force” that “carves away spaces inside… it is by nature an excavator, taking away and reforming what is left.”

“Sadness, grief and loss are not always given much air time in the disability community,” she writes.

Sadness, grief and loss are not always given much air time in the disability community.

“Maybe we are so busy proving what we can do in light of what others think we can’t do, that it can be hard to make that journey to our vulnerable self. As the predominant view of disability in society is that it’s a tragedy, who wants to feed into that? I wonder too if it fits into a wider ‘think positive’ ethos. We dare not mention loss without rushing to say there is also gain. And how do we go near loss if we can’t fix it?”

Trish has had many gains. She currently works in communications and runs a small business. And seven years ago, she rode New Zealand’s Central Otago Rail Trail in a motorised wheelchair, another testimony to her willpower.

“The trail is the width of a train, wide enough for a wheelchair and a bike; for two lane traffic. In the Upper Taeri Gorge I feel like I’m in the Grand Canyon. A tree offers me it’s first born, a yellow leaf propelling its way towards me like a kiss. I have arrived in Wonderland.”

We sat down with Trish to find out more.

What made you want to write The Walking Stick Tree?

When I was growing up I didn’t see my experience mirrored in those around me. I began writing my story in my head back then, as a way to understand  it myself. When I returned to the manuscript four years ago I added four essays in order to link my individual story to wider stories and issues around disability.

What’s been valuable about the process?

Cover to The Walking Stick Tree

Having a book at the end of it! Completing something as big as this is immensely satisfying.

I’ve realised writing helps me think—or writing is my way of thinking. Deciding to have essays in the book gave me the impetus to spend time thinking about topics and herding my thoughts and feelings into a cohesive shape.

Through writing the book I’ve also ended up re-connecting with  people from my past, and had conversations with people in the present, about the past. That wasn’t my motivation, but it’s been a precious outcome.

You describe your arthritis as having ‘burned itself out’. What does that mean exactly?

It means I don’t need to be on continuous pain medication. It means I don’t get fevers, or the rash—well, rarely. Juvenile Rheumatoid Arthritis (also called Juvenile Idiopathic Arthritis) is sometimes known to ‘burn out’, which of course is what everyone wants to happen, but is never guaranteed. My arthritis started at age six and probably burnt out in my 20s.

Despite that, the damage when the disease was active was so great, that nearly all my joints are now worn-out shonky osteo-arthritis type of joints, with very limited movement and very occasionally a joint becomes inflamed. I walk slowly, in a stiff kind of way and only for short distances. My height has been affected and because of the effort of movement, my energy levels too. Lifestyle changes help me manage what pain there is.

You have a purpose-built house and an altered car—can you tell me more about these and how having them has affected your life?

My house has low benches, light switches, door handles, window catches and cupboard. This means I can reach everything easily. The drawers glide and don’t require strength to operate. The house is on a flat section with level access. When movement is difficult and/or painful it means you have to plan ahead in order to minimise fatigue. My purpose-built house means I’m not battling an unfriendly environment on the home front and don’t have to plan domestic activities as minutely as I used to. It means I can use energy for more enjoyable activities.

When I first got a car, at age 18, it moved my life from one of dependence to independence. I had choices about where I went and when. If I can make a free decision about where I go physically it also frees my mind up to imagine where I might go next and what I might do.

An illustration by Sarah Laing from the book, showing how Trish Harris picked up her walking stick growing up.

In your book, you say that ‘sadness, grief and loss are not always given much airtime in the disability community’. What sort of conversations would you like to see around these experiences?

I’m not sure it’s about conversations, though they are a great starting point. For me, finding creative means to express those feelings and tapping into spiritual resources have also helped. Both can offer us the chance to approach big feelings in a safe way—or a way that allows for (though doesn’t guarantee) transformation.

Do you feel forced to be positive about your life?

Actually the ‘can do’ positive attitude is pretty well ingrained in me. It’s brought huge benefits to my life in terms of tackling employment, housing, transport and everyday living hurdles—so I don’t want to diss it completely.

What has also been liberating, especially in my adult years, is to acknowledge the shit. That which can’t be turned into a positive. All the aspects of having this disease that make me angry or make me weep. Acknowledging this hasn’t changed my body, but sometimes, often, it can help liberate inner aspects of me. I don’t know if we reach the end of grief, but my hope is that even when it’s big, we can find creative and spiritual ways to know it, so that it won’t be the end of us.

I think we (I can only speak for my experience of living in New Zealand here) live in a society which wants us to hurry up and get to that place of being positive, because it’s scared that if people begin to start feeling sadness or grief they’ll stay in it. I’ve had the benefit of working with people who respect timing and don’t force positivity.

 

Trish Harris on the Great Otago Rail Trail in her motorized wheelchair. Photo: Amanda Keogh

I admit I was really jealous reading about your experience riding the Great Otago Rail Trail! What were the main challenges and triumphs for you in doing this?

I’d be jealous too, if I hadn’t been the one doing it! It was such a gift. The challenges were around my motorized wheelchair, my energy and the trail itself. It’s a very popular trail. I knew several friends who’d done it and I talked to them about the trail surface and any other obstacles. Because it’s an old railway track we knew the gradient would be manageable. I practiced on rough surfaces (gravelly unsealed roads, some with quite big stones) and discovered my wheelchair could handle them. Then there was locating a van with a wheelchair hoist and working out which sections of the trail I could do, taking into account where the road and the trail intersected, which sections I didn’t want to miss out on and how my energy was. We factored in a rest day, when everyone else went sight-seeing and I stayed in bed!

Completing more than 100km of the 150km trail was a huge buzz. I won’t forget the first day, setting off down that track in my chair, mountains to the left and up front and not knowing what was ahead and how we/I’d manage it. Here I was on an outdoor adventure with friends, where I could participate on an equal footing. I haven’t had many of those in my life—and I don’t think I’d ever spent so many hours outside! I’m very grateful to the friends who I rail-trailed with, especially Helen who looked after all the transport and accommodation logistics and drove the van.

What are your main focuses in life at the moment? It’s the start of a new year—are you the sort to write resolutions?

I don’t tend to write resolutions these days, though I’ll usually mull over hopes for the year ahead. The last few years have taken emotional and intellectual energy—there’s no way to avoid that when writing a memoir. So, a little rest is on the agenda!

I hope to write some new poems. They’re a good barometer of how spacious my life is feeling.

I want to take up opportunities to talk about what’s in my memoir—not just my story, but how it fits into a wider story. And if I’m really honest, during 2017 I’m also hoping the memoir will take me on some adventures!

You can buy The Walking Stick Tree in print at the Escalator Press website, or on Amazon here.

 

Profiles

“There Is More In You”

Even lupus couldn't stop Danae Lee from pursuing a once-in-a-lifetime wilderness adventure.

Spending two and a half days alone in the wild heart of New Zealand might be a daunting prospect for most people, but for Danae Lee, who has Systemic Lupus Erythematosus, Raynaud Syndrome, and arthritis, it was the opportunity of a lifetime.

The thirty-four year old, who was diagnosed with lupus in 2009, has spent nearly her whole life wanting to participate in New Zealand’s most prestigious outdoor adventure program, Outward Bound, which tasks participants to have real, challenging adventures in the heart of the wilderness. But when she got sick, she was certain she’d never get the chance.

“I just figured that was it, I wouldn’t get to go,” she says. But then she found out about Aspire, Outward Bound’s course designed specifically for people who face limitations like Danae’s.

Danae Lee and her dog, Scrappy.

Danae Lee and her dog, Novak.

The Lupus Foundation of America estimates around 1.5 million Americans have a form of the disease, and at least five million people worldwide. In New Zealand, it affects 1 in 900 people, with the major symptoms being swollen and achy joints, extreme fatigue, rashes, fever and chest pain.

Danae’s Twitter name is Fuck Lupus, a handle which aptly describes her own attitude to the disease. Despite suffering a massive cardiac arrest and slipping into a week-long coma in 2011, she has now almost completed a bachelor’s degree in environmental studies, surfs, teaches, speaks fluent Te Reo (the language of the indigenous Māori people of New Zealand). Throwing herself into Outward Bound in September this year was just icing on the cake. 

“Having a very-near death experience has shaped my view of the world,” she says. “The freedom and ability to do anything at all is a taonga (treasure) to me.”

Danae’s Twitter name is Fuck Lupus, a handle which aptly describes her own attitude to the disease.

The cardiac arrest came following months of Lupus-related complications. An infection spread through her body like wildfire, shutting down major organs one by one. After she fell into a coma, Danae’s family were told to prepare themselves for the worst.

“They were just watching me slip away. But after a week, I suddenly started fighting back, and I woke up. I had to do a month of dialysis because the Lupus had attacked my kidneys, and I had to learn to walk again. It’s a huge thing to recover from – I think I’m still recovering, actually.”

In July this year, Danae applied for a scholarship to attend Aspire. She was successful, but needed more support to cover the whole cost. So her younger sister Nicole set about fundraising online.

“Danae is such an inspiration to me,” says Nicole. “ She has not had an easy ride but she has some pretty amazing determination, and hasn’t let her illness knock her spirit.

The Outward Bound program tests participants with adventures in the New Zealand wilderness.

The Outward Bound program tests participants with adventures in the New Zealand wilderness.

“My sister loves the outdoors, but Lupus has meant she hasn’t been able to enjoy it the way she used to. She faces pain and fatigue every day. Aspire was the chance of a lifetime for her to reconnect with that part of her life in a safe environment, with peers who have faced similar challenges.”

The campaign raised close to $2000, and within a few short weeks, Danae was on her way.

Outward Bound takes place in New Zealand’s picturesque Marlborough Sounds, several hundred miles from Danae’s home in Whakatāne.

“Outward Bound requires a total shift in mindset and lifestyle right from day one,” she says. “All forms of technology, communication, and media – including books! – are removed before you get on the boat to Anakiwa.”

“Every minute of every day is accounted for. Every morning started with 20 minutes of physical training, followed by a two mile run or walk, then a frosty dip in the sea before breakfast. The daily activities are not revealed until the moment before they begin, so you never know what’s coming next.”

Even if you think you can’t: There is more in you.

Her ‘Watch,’ Danae says–the name for each cohort of Aspire participants–would spend eight days experiencing sea kayaking, rock climbing, high ropes, rowing, sailing, and the famous “solo”: almost three days spent alone at an undisclosed location in the New Zealand wilderness.  

“I love the outdoors and was happy to go along with anything! I really enjoyed my solo time in the bush. I crawled about two meters from the shelter I’d built, and curled up in my sleeping bag inside this dead tree trunk. After a while, birds started coming around me: piwakawaka, tui, robins. I had to manage my food ration of a carrot, a biscuit, an apple and some scroggin (trail mix) —  and I actually had the apple left at the end!”

When she's not climbing mountains and exploring forests, Lee loves to surf.

When she’s not climbing mountains and exploring forests, Lee loves to surf.

But, she goes on to say, one of the most important parts of Aspire is getting to know your teammates. Along with the outdoor activities, time is spent each day in group sessions focused on goal setting, team building, and sharing life experiences.

“The people on my course are some of the most amazing people I’ve ever met, and it was a privilege to be a part of our Aspire Shackleton 621 Watch,” she says. “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?”

Danae was determined to give everything a shot, even though she knew her body wouldn’t hold up for some of the activities.

Surfing is how I heal, have fun and keep fit.

“The rock climbing was frustrating for me,” she says. “I used to enjoy doing it when I was younger and would have breezed through it if it weren’t for my arthritis, which stopped me from reaching the top of the wall despite numerous attempts. The frustration of watching everyone else achieve this was an emotional low point for me personally. But it was made bearable and put into perspective by thoughtful debriefing processes with my watchmates and instructors. I’m pretty sure everyone on the course had similar moments, there were some real big struggles going on for everybody, so that solidarity was a useful crutch!”

She gives huge thanks to the Outward Bound team. “Our instructors were impeccably professional and well trained. They did their very best to provide a safe environment within an inherently risky one. I’d recommend this experience to anyone. Even if you think you can’t: There is more in you.”

Lee surveys Middle Earth, alone with her thoughts.

Lee surveys Middle Earth, alone with her thoughts.

Back at home in Whakatāne, Danae is in the final week of her degree, which she’s been working on since 2013, spends time with her family and her two dogs Novak and Ripley (“my best friends!”), and surfs whenever her health allows.

“Surfing is how I heal, have fun and keep fit. I’ve surfed since I was 15 and there have been extended periods where I’ve been unable to do it, so I make the most of going whenever I can.”

She also gets to use her language skills every day, as her region has the highest percentage of Te Reo speakers in New Zealand. “Nōku te waimarie,” she says. “I’m lucky!”

Histories

A Lion In The Day

How Katherine Mansfield, one of New Zealand's most prolific storytellers, found strength to deal with her chronic pain through her fiction.

I’m a lion all day, darling, but with the last point of daylight I begin to turn into a lamb and by midnight—mon Dieu! by midnight the whole world has turned into a butcher.”

– Katherine Mansfield, in a letter to her husband, 1913.

Katherine Mansfield is considered one of New Zealand’s most famous writers, despite leaving the country in 1908 when she was barely nineteen, and never being able to return.

While the stories that form her legacy as a prominent modernist author are undeniably significant it is Katherine’s life itself that is remains compelling to millions of readers. Both Vanessa Redgrave and Kate Elliott have portrayed her in recent years in movie and television adaptations of her works: first in 1974’s BBC miniseries, A Picture of Katherine Mansfield, and then again in 2011, in the biopic Bliss.

Actress Vanessa Redgrave as Katherine Mansfield.

Actress Vanessa Redgrave as Katherine Mansfield.

Small wonder. Now lauded as a woman ahead of her time, she was an openly bisexual teenager, her activities driving a wedge between the defiant writer and her socially respectable family. Her early years would see her suffer at least one miscarriage, a rushed marriage which ended on the same night it began, excommunication from her mother, and her eventual settlement in Europe, far from home.

In 1909, she contracted gonorrhoea, which Claire Tomalin argues in her biography A Secret Life was responsible for Katherine’s susceptibility to the tuberculosis which eventually killed her. Certainly, the sexually transmitted infection was the catalyst for the many debilitating illnesses she experienced afterwards, including peritonitis, pericarditis, pleurisy, and gonococcal arthritis.

Portrait of Katherine Mansfield by Anne Estelle Rice.

Portrait of Katherine Mansfield by Anne Estelle Rice.

She was diagnosed with tuberculosis in 1917, when she was 27. She would eventually live another six years.  Tomalin’s biography describes her as a “chronic invalid” from 1910 onward, throughout her writing life.

Despite this, her mastery and the volume of her work are renowned, and she was celebrated among her contemporaries. Virginia Woolf, a great friend of Katherine’s, is recorded as having said that hers was the only writing she was ever jealous of. She published three short story collections during her life, as well as creating a legacy of innumerable poems, letters, and notebooks. Sixteen different collections have been released since her death, and three major biographies.

Her letters and journal entries, many of which were published posthumously by her second husband John Middleton Murry, give unique and deeply personal insight into what that life was really like.

As a researcher and a sufferer of arthritis myself, it was this particular affliction that drew me closer to Katherine. Her letters detail her pain, both physical and emotional, but also reveal a relentless spirit and sharp wit. Katherine never stopped believing that she would be cured. But, she confesses to a friend; “I feel about 800, Koteliansky, for I can hardly walk at all—nor turn in my bed without crying out against my bones.”

Under such conditions – the fevers, joint and abdominal pain, inflammation in her hands and rashes from arthritis, and the fatigue, coughing, and loss of appetite and weight caused by tuberculosis, it seems nothing short of a miracle she managed to be so prolific.

I scoured her words for some clue to her strength of character and tenacity.

In strange foreshadowing of my search, she says in a letter in 1922; “’I think the only way to live as a writer is to draw upon one’s real familiar life – to find the treasure in that.…And the curious thing is that if we describe this which seems to us so intensely personal, other people take it to themselves and understand it as if it were their own.”

A rare photograph of Katherine Mansfield during her life.

A rare photograph of Katherine Mansfield during her life.

In October 1922, desperate for relief from her failing body, she moved to Georges Gurdjieff’s “Institute for the Harmonious Development of Man.” She had decided her health was the result of a sickness in her soul and that the highly questionable Gurdjieff could help to “cleanse” her. His rigorous routines included hard physical labour, denial of heating, and instruction for her to sleep in a loft above a pen of cows. Unsurprisingly, these measures did not improve her condition.

Murry arrived at the Institute in January 1923, and found her in strangely good spirits. In fact, it has been written that these last months were the happiest of her life. Perhaps at least she had found a place to calm her intensely restless nature.

But, following dinner with her husband after his arrival, she bounded up the stairs – and caused the final pulmonary haemorrhage that at last took her life. She was 34 years old.  

Recently, a previously unpublished folder of Katherine’s poems was discovered. While she was never really known as a poet, Mansfield’s work is certainly lyrical, and these works, written when she was 22, show deep promise and bring into sharp focus how much was lost by her untimely death.  

One of the works, unsettlingly entitled “To KM,” as if Katherine were addressing herself, appears an unnerving but strangely soothing prediction of her swift final bow.  

“A moment – a moment … I die.”

“Up and up beat her wings.”

Histories

Renoir’s Radiant Brush

The impressionist painter completed nearly 400 paintings after rheumatoid arthritis deformed his hands.

The impressionist painter completed nearly 400 paintings after rheumatoid arthritis deformed his hands

In Pierre-Auguste Renoir’s painting, “The Bathers” (“Les Baigneuses”), two young women lounge in the foreground. They are round and relaxed, all rosy curves and pink flesh on a bed of grass and blossoms. Flushed red with health, their lips and cheeks, are redolent of vigorous activity despite their reclining postures. The piece is vibrant and sensual, filled with bright strokes of purple, yellow, green, and blue. Henri Matisse proclaimed it a masterpiece, stating it was “one of the most beautiful pictures ever painted.”

Renoir worked on the piece from 1918 to 1919, the year of his death at age 78. At the time, his own body sat in bony contrast to his canvas’ supple subjects. For the previous 25 years, the influential artist and founding member of the Impressionist movement had been suffering the progressively debilitating effects of rheumatoid arthritis, an autoimmune disorder that causes a person’s immune system to mistakenly attack his or her own body’s tissues. Over the course of the disease, the synovial tissue lining the joints thickens, which leads to painful swelling. If the inflammation goes unchecked, bone erosion and joint deformity occur. By the time Renoir completed “The Bathers,” rheumatoid arthritis had reduced his hands to tight fists, like knobby wounds left on a pruned tree trunk. He hadn’t walked in about seven years, and his frail frame weighed no more than 100 pounds. In the face of these physical afflictions, the prodigious painter continued to work. He created more than 400 pieces after the disease had deformed his fingers, adding to a lifetime total of around 4,000 paintings.

 

Just as his doctors recommended, Renoir went for walks (first with one cane, and then with two), but as a painter, he knew it was his hands that he needed to keep agile. He began juggling wooden sticks for ten minutes every day before heading to his studio. He and his wife Aline started playing billiards because he believed the game helped keep him flexible by encouraging him to bend into unusual postures. And he practiced bilboquet, a tricky French game, similar to cup-and-ball, which involves using the pointed end of a wooden stick to catch a ball with a hole in it.

Despite his hopes and efforts, in 1903, the disorder turned aggressive — eventually misshaping his hands, feet, and legs. His thumbs began to bend toward his palms and his fingers curled toward his wrists. By 1912, he could no longer walk. But as the disease advanced, he adapted. “The more intolerable his suffering became, the more Renoir painted,” recalled Jean in his memoir Renoir, My Father. When gnarled hands kept him from gripping his palette, he had it fixed to the arm of his wheelchair. When he couldn’t pick up his brushes, he had someone (often his youngest son, Claude or a model) wedge it between his index finger and his middle finger.

No longer able to stand and with limited range of motion in his shoulders, Renoir could only paint within a one-foot-by-one-foot area for the last several years of his life. He devised a custom-made easel, or “moving canvas,” which allowed him to continue working on large paintings. The system involved to two cylinders, one near the ground and one seven feet above, linked together by his old bicycle chain. By turning a crank on the bottom cylinder, his assistants could scroll the canvas in either direction. “The Bathers,” which measures around five feet by three and a half feet, was painted this way.

His physical deterioration made him a slower, but no less precise, painter. Once, when an art dealer was watching him paint with his clenched fists, he remarked, “You see, you don’t even need a hand for painting!” A silent film clip from 1915 by Sacha Guitry captures just how active Renoir was in front of a canvas — even when his fingers were all but paralyzed. His eyes, which he once described as “cow eyes,” sparkle even in black and white. With Claude at his side, he takes a drag off his ever-present cigarette, and then trades his son the cigarette for his brush. He leans in and the paintbrush dances across the canvas. Then he pulls back, squints at his work, and dives back in before pausing to chat with the filmmaker.

 

In a letter to his friend and art dealer, Ambroise Vollard, Renoir described his physical pain as “unbearable, especially at night,” and said he painted to “forget my sufferings.” Warm weather seemed to provide some relief, and in Renoir’s last decade, the family moved to an estate in Cagnes-sur-Mer along France’s southeastern coast. Here, Renoir’s days began and ended in agony, but he found joy painting under the Mediterranean sun. Jean recalled his father’s time spent outside in front of the easel: “He smiled and winked, as he called us to witness this conspiracy which had just been arranged between the grass, the olive trees, the model, and himself,” recalled Jean. “After a minute or two, he would start humming. And a day of happiness would begin for Renoir, a day as wonderful as the one that preceded it, and the one which was to follow.”

Henri Matisse, who visited the aged master several times at the estate, observed “as his body dwindled, the soul in him seemed to grow stronger continually and express itself with more radiant ease.” On one of his visits, he asked Renoir, why he continued to paint in his arthritic condition. “The pain passes, Matisse,” he replied, “but the beauty remains.”