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Essays

How A Comic Book Disease Helped Me Come To Terms With Lupus

When it comes to getting people to treat sickness seriously, a fictional disease can sometimes be more powerful than a real one.

My cousin’s daughter is a willowy redhead with a long neck like mine. She has come to visit me with her husband and two little girls.

I notice he’s a little hands-off as a parent, letting her do all the heavy lifting. She makes breakfast for the kids, fixes their lunches, makes dinner and bathes them at night. He doesn’t.

She and I have a moment alone. Sitting over a glass of wine in my dining room she tells me that she has ulcerative colitis. Boom, I think, strike three of deadly autoimmune diseases in our family. Her little brother had another autoimmune disease that killed his liver and thus him, before he was 30. She is 32.

When I was 25, doctors told me that lupus nephritis would kill me before I turned 26. My own antibodies were mistakenly attacking my healthy kidneys and couldn’t be stopped. A miracle saved me, but that’s another story; the point is, there’s a family tendency towards autoimmune disorders, and as she sits in front of me, I realize I need to get her to focus on saving herself before her disease flares.

It could be her life.

She has to have less stress. She has to take care of herself and allow herself to be taken care of. She can’t be a martyr. Her husband has to step up. Neither of them are treating this seriously yet, I can tell. She needs to advocate for herself. How can I break through to her before it’s too late?

So I tell her a story.

Brenda Starr dreams of the mysterious Basil St. John.

When I was growing up, I always wanted to be Brenda Starr, the red-headed female reporter out of the comic strips.

When I was growing up, I associated myself with another willowy red-head, Brenda Starr, the fearless female reporter out of the comic strips. Brenda was in love with the mysterious Basil St. John, who had a disease that needed the nectar of a black orchid to keep him alive. If he didn’t fly back to the jungle every so often to get more of his black orchid serum, he would die.

It wasn’t always opportune for him, or for Brenda, who eventually married St. John. If you didn’t know he was sick, Basil’s sudden disappearances could seem selfish; likewise, flying back to the jungle constantly could be inconvenient for both of them. But his life was on the line. He needed to take care of his health first, and his health required Black Orchid nectar.

I tell my cousin’s sister that I have always tried to treat myself as if I had the Black Orchid Disease. Then I tell her countless little anecdotes about the ways my life had changed, and the many small sips I had to take from my own vial of Black Orchid serum, since I first found out I had an autoimmune disorder.

I have always tried to treat myself as if I had the Black Orchid Disease.

I tell her about the last time I went with friends to a concert, and had to have them drop me in front while they walked back from parking. I tell her about how sometimes the fatigue coming home from work is so bad that if I can’t get a bus seat, I’ll take a taxi; it’s cheaper than kidney failure.

Sip sip.

I tell her about how, when the joints in my fingers swelled and couldn’t type as well anymore, I went to my boss and asked him to get me better equipment. I tell her about the time I couldn’t grip the doorknob hard enough to get out of my New York apartment, and had to call the super to let me out; because of my Black Orchid disease, I always now keep the door partially open all the way.

Sip sip sip.

Basil St. John needed to return to the jungle periodically to refill his vial of Black Orchid Nectar, which was the only thing keeping him alive.

I explain to her that because of my prescribed steroids, I always have to walk in the shade. I wear a hat all the time and use an umbrella in the sun. Foods I love are now off-limits. My face sometimes puffs up, my clothes don’t fit, and the tiny hairs on the back of my neck grow out in corkscrews, even though my hair is straight.

Autoimmune diseases are no joke. They require vigilance.

These are the symptoms of my own personal Black Orchid Disease. Hers will be different, I tell her, but she needs to keep her vial of serum ready. Even though she still feels fine and still looks beautiful, she will have to change her life to stay alive. Because autoimmune diseases are no joke. They require vigilance.

When she said her goodbyes, I wasn’t sure she understood what I was trying to say. But several weeks later, she mentioned the words “Black Orchid Disease” on the phone. Later, I saw an Instagram she posted of her husband folding laundry with the girls, something he’d never done before. The next time they visited, she left the dinner table to put the little one to bed and when she came out she said to her husband, “Your turn.”

I smiled at her. She got the memo and so did he.

Essays

When Lupus Happens To You

In today's celebrity culture, it's all too common to compare yourself to the glitterati... but that cuts both ways when you have an autoimmune disease.

The first time I’d ever heard of lupus was during the second season of America’s Next Top Model.

America’s Next Top Model contestant Mercedes Scelba-Shorte has lupus.

It was the earlier days of reality television, so the show was still working on finding its legs when it came to typecasting for ratings. You know—the single mother who misses her child, the tough girl from the streets just trying to make it, the mean girl battling her own insecurity, all battling it out for the title of “top model” and a contract with a modeling agency that could make it true.

So when contestant Mercedes Yvette Scelba-Shorte was given the token sob story on an episode as she revealed her lupus diagnosis, it felt like a weird and unusual angle.

To be honest, I don’t even remember how it came up—just that I felt confused on so many levels. What is lupus? I thought, making a mental note to look it up (sometime). Skeptically, I wondered: How could someone that looks so well claim to be so sick? After all, they offered no additional information, no discussion about its long-term effects.

In this vacuum, I asked cynically, is she even really that ill? Or is she just being used as a show pony?

Back then, the tears shed over this unheard of illness seemed to me like a cheap, sensationalist ratings trick.


Invisible illnesses are cloaked in skepticism and shame.

There’s just no way to help a well person understand what it’s like to ache from the insides of your bones or the center of your joints. In the Chinese language Fuzhouhua, there’s a word for it—which I suspect stems from the higher occurrence of lupus and its symptoms in those of Chinese, as well as African, Hispanic, and Caribbean descent—but not in English. It literally means a sore aching from the marrow of your bones out.

Lack of language aside, it’s hard to talk about a disease others can’t see and you yourself don’t always feel. People tend to disbelieve discomfort they cannot see, and since no one has a gauge installed that can tell you if your threshold for pain is lower than average, their doubt makes you doubt yourself. Rather than be viewed as a complainer, or as someone who is using their illness as an excuse, you push through the pain, and try to pretend there’s nothing wrong.

It’s hard to talk about a disease others can’t see and you yourself don’t always feel.

Even if you are able to bring yourself to share your diagnosis, there’s always that bated-breath moment: how will they react? Perhaps they simply won’t, offering nothing but a blank stare … in which case, it’s now up to you to educate them about lupus. Or maybe they’ll brush it off dismissively, a reaction that hurts even more. Another possibility: the person you tell about your lupus reacts with drama and tears, in which case, you’re the one comforting someone about your own disease.

There are no good outcomes. And so, with options this poor, we stay not only invisible, but silent.


I knew Seal best as the singer of “Kiss From a Rose” … and the husband to supermodel Heidi Klum.

As a shallow teenager belting it out in the shower (“My power, my pleasure, my pain … babyyyyy”) I never gave too much thought to the lyrics, and certainly not enough to analyze what they referred to. But I did give fleeting thought to Seal’s appearance, enough to question his union to one of the most objectively lovely women on Earth.

Seal and then-wife Heidi Klum. Seal’s distinctive facial scars are the result of lupus.

Klum was—and still is—a legend in the fashion industry, the gold standard of sublime aestheticism. And Seal is … well, scarred. Damaged. His lumpy, scaly face frightened me. While thumbing through glossy tabloids, I would avert my eyes to his gorgeous then-wife rather than look closely at his disfigurement, and as I did so, I would wonder at the inequality of their pairing. How did he score her with a face like that?

Then I’d turn the page, never thinking for a second longer about just why Seal’s face looked the way it did.

Years later, I learned it was because of discoid lupus erythematosus.


I couldn’t understand why I was getting so many strange rashes.

The first time it happened was at a Long Island beach right before prom; I’d wanted to get a tan that’d make my silver dress shine brighter. The second was years later, on a cruise to the Caribbean. It surfaced again in Hawaii after just a single beach day, and once more in Los Cabos on a group trip. After this, I swore off traveling and decided I just didn’t like beaches.

I blamed sand fleas, jellyfish stings, and sunscreen. During my 12-city trip to China, I blamed the oozing blisters on my hands and feet on the  pollutants in the water.

Eventually, I saw water as the only common factor in all of these reactions, and became convinced I was allergic to something mysterious found in foreign bodies of it. And because the rashes were getting progressively worse and my dermatologist, unable to see them at their blistering height, attributed it to generalized eczema, I sought an allergist to help me pinpoint exactly what that unknown factor was.

“Actually, I think you may just be photosensitive, especially in hot climates … but let’s just test you for lupus, in case,” he said. He quickly added, reassuringly: “I doubt you have it, though; you have so few of the red flags.”

When the test came back positive, he was still confident that it was a false one. “It happens all the time.”

I put it out of my mind.


When Selena Gomez canceled 12 tour dates in 2013 after a holiday “concert meltdown,” many people assumed it was either because of her breakup with Justin Bieber or that the wholesome star had fallen prey to substance abuse. After Britney Spears’s legendary breakdown and Lindsay Lohan’s much-publicized exploits, many were also quick to speculate that she was cracking up under the pressures of fame.

In a person so young and vibrant, taking time off to “focus on herself” sounds like a PR cop-out. In celebrity-speak, “me-time” means post-breakup sulking; “taking care of one’s health” has become a nice way to say “rehab.” So can you fault the judging public for assuming the worst?

Pop sensation Selena Gomez has lupus.

Of course, “the worst” is also another matter of context. After years of build-up, the rumor mill forced Gomez to out the real cause of her anxiety, fatigue, and depression: systemic lupus erythematosus.

In December 2015, nearly two years later, she finally opened up about it to Billboard, going on the record stating, “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke … I wanted so badly to say, ‘You guys have no idea. You’re assholes.’”


I cried when my rheumatologist confirmed that my allergist’s false positive was, in fact, not false at all.

Typically tough on myself and on others, tears always seemed like a luxury I couldn’t afford. But on that spring day, I let the grief wash over me as I sat in my car and mourned.

I had spent the previous few years reclaiming my health and body, losing 40 pounds and discovering an addiction to endorphins. I was doing power yoga in 100-degree studios, kickboxing on heavy bags, running miles for the feel of the wind in my face, and swinging around kettlebells like nobody’s business. I was leaner, stronger, and more able-bodied than I’d ever been in my life, and goddamnit, I was proud of myself.

But with this diagnosis, this lifestyle might be one I’d have to give up. Muscle inflammation, joint pain, and stiffness are the biggest harbingers of a lupus flare, and can come on suddenly. I’d read stories that chilled me to my aching bones of sufferers who, overnight, found themselves unable to get themselves out of bed anymore. Permanently.

And I, Su-Jit Lin, have lupus too!

What’s more, with this diagnosis, my whole career had an expiration date, too. As a writer, I need dexterity in my fingers and in my mind. But headaches, dizziness, brain fog, and difficulty expressing thoughts can also be part of a flare. And so I wept for the eventual limitations that would take away the things I loved to do—the things that made me me.

I researched prednisone, the most commonly prescribed medication for controlling lupus inflammation, and was devastated to see that weight gain was one of the biggest ones. By accepting medication, I would be undoing all of the progress I had made losing weight over the last few years … and that was without the extreme fatigue, weakness, and insomnia that would now be conspiring to keep me from the gym.

I shed tears for my vanity. Unlike some women, I’d always loved my hair, with its unusually wavy body and healthy gleam of rich, blue-black tones. Now I had to resign myself to saying good-bye to it; it had already started sporadically falling out in clumps.

Lupus is a terrorist. Everything’s a target. All is fair game.

I’d been blessed with clear skin, as well. Should the dreaded mala rash spread its wings across my cheeks, was I to bid that farewell, too?

Yet in many ways, these are the smallest symptoms.

While no one really knows what causes it, the simple explanation of systemic lupus erythematosus is that your body basically starts attacking itself. Called “The Great Imitator,” its weapons are wild cards, and the war it wages is a guerilla one.

So without warning, one day, my kidneys could suddenly become inflamed to the point that they stop functioning. Same with my heart, which is now more vulnerable to cardiac arrest and arterial disease. Thanks to lupus, I have an increased risk of stroke, bleeding, and blood clotting, as well as a greater susceptibility to cancer, infections of all kinds, and bone tissue death.

Lupus is a terrorist. Everything’s a target. All is fair game.


Legendary writer Flannery O’Connor died of complications from lupus at the age of 39 in 1964. Howie D of the Backstreet Boys lost his sister to the disease at age 38. Both 32 at the time of their passing, actress Inday Ba and hip-hop producer James “J. Dilla” Yancy fell victims to lupus, too. So did journalist Charles Kuralt in 1997, and Ray Walston in 2001.

Paula Abdul’s career was nearly destroyed as her lupus- and reflex sympathetic dystrophy-spurred erratic behavior made her a walking joke. Nick Cannon, like MLB player Tim Raines, experienced kidney failure, plus life-threatening clots in his lungs from lupus nephritis. Toni Braxton has also been hospitalized for undetailed complications. Meanwhile, Kristen Johnson and Maurissa Tancharoen both had to put their careers on hold to undergo chemotherapy to treat their lupus.

And yet, our living stars all continue to persevere as the internal, intangible battle between mind and matter wages on.

Some days, they’re inspiring and a message of hope. Other days, they’re frustrating as they perpetuate the impression that it’s just not that big a deal.

It’s impossible to tell which feeling is right.


I had meant to write this as an empowerment piece. After all, it’s been five years since my diagnosis, and—thanks to both my foundation of healthy, active living and strength of will to power through pain—I’ve yet to require a regular regimen of medication.

Sure, I still lose fistfuls of hair to hot showers and still get mottled red rashes from a single day on the beach. Yes, I deal with random inflammation in my joints and soft tissue, otherwise unexplainable infections, and straight days of radiating headaches. And I’m sometimes sidelined by a fatigue so deep that even typing feels like lifting bricks under gray skies of sadness, my brain draped in a fog of confusion and frustration. “Nevertheless, she persisted.”

Sometimes I’m sidelined by a fatigue so deep that even typing feels like lifting bricks under gray skies of sadness…

But being able to stay medication-free? Well, that’s only because I’m lucky. So far, lupus hasn’t reared its head in its ugliest form yet, which is why that story of empowerment can’t be told at this time … because that story isn’t over. As a hibernating disease that flares up in a temper when woken, anything can still happen.

However, what’s done with is my ignorance about it. The insensitive perspective I once held. The “out of sight, out of mind” approach I, like so many others, have when it comes to invisible illnesses. All of that is no more.

What’s gone is the crying, the grieving. Instead, I thank my joints every day for allowing me to get out of bed and love my muscles for everything they can still do. I cherish my brain on the days my thoughts flow effortlessly, and marvel at the fingers that can put them on paper.

So although lupus is a self-destructive disease, the first part of myself it took down was my apathy: the ability to choose not see this ghost of a malady when so many highly visible people already had it. Because when it happens to you … well, that changes things, now doesn’t it?

The Good Fight

The Patient Whisperer

In medicine, plain language saves lives, which is why Jennifer Pearce dedicated her career to helping patients understand doctors, and the other way around.

Jennifer Pearce, the founder of Plain Language Health, was standing in her driveway on a December morning in 2006 when she came face to face with the woman who would change the course of her career.

“One day I picked up the paper from my driveway, and on the front page was an article about a young woman with lupus named Nikki White,” Pearce says. “Here she was, not much younger than I, and [the article] recounted how — through a series of mishaps, miscommunications, misunderstandings, and administrative snafus — she lost her battle with systemic lupus and lost her life at 32.”

The article that changed Jennifer Pearce’s life.

Pearce herself was already 15 years into her own lupus journey — an experience so fraught with confusions that it had led her to change careers to patient engagement advocacy. But White’s story in particular motivated Pearce to double down on her efforts. In White’s tragedy Pearce recognized the fate that could all too easily have been her own.

“That’s the day I decided. I already knew how to speak Patient; I needed to learn how to speak Health System. I decided then that I would earn a Master’s degree in Health Care Administration so I could set about effecting change from the inside.”

Entering the System

Jennifer Pearce was just one day shy of her 20th birthday when she first found out she had lupus.

The California native had begun experiencing odd symptoms during the summer between her sophomore and junior years of college, starting with a bad cough, extreme fatigue, and an aching feeling in her lungs.

Jennifer Pearce.

First, Pearce was diagnosed with whooping cough. (It wasn’t.) Then blood work suggested she had syphilis. (She didn’t.) More appointments and tests determined the whooping cough was actually a type of lung inflammation called pleurisy, while the false positive for syphilis turned out to be Antiphospholipid Antibody Syndrome (APS), an autoimmune condition that causes blood clots. APS is seen in about half of all lupus patients.

Eventually a physician put the conditions and clues together. “It took about three months, quite a few tests, and quite a few diagnoses to figure out that I indeed had systemic lupus,” Pearce she says.

Systemic lupus erythematosus, or simply lupus, is a chronic autoimmune disease in which the body’s immune system attacks its own tissue and organs. The inflammation that results can manifest in symptoms as varied as facial rash, joint pain, cough, photosensitivity, unexplainable fatigue, confusion, and memory loss.

Pearce’s condition, which she has now managed for more than 20 years, would ultimately prove relatively mild. But rather than the experience of lupus itself, it’s the experience of being a lupus patient that has made the greatest impact on shaping Pearce’s career.

Navigating the System

From the start of her diagnostic journey, Pearce says, “I was interacting with the health system by myself, and I was very passive because that’s how I’d been raised. You don’t challenge the doctor; you listen and nod your head and say thank you. And boy, did that lead to an unpleasant few months.”

Like most people on long and twisting healthcare paths, Pearce found herself being bounced around “from primary care to specialist to specialist to specialist,” navigating the health system without a map, compass, or rudder. In fact, she eventually came to realize that she didn’t even speak the right language.

“I would leave these appointments not fully understanding what had just transpired,” she says. “I knew I was seeing some of the best specialists in the field. Yet despite having a college degree from a good university and being relatively articulate, I left feeling like an idiot. I just couldn’t understand. And I thought, What am I doing wrong here?”

“My big transformation,” she says, “was realizing this wasn’t my fault.”

“My big transformation,” she says, “was realizing this wasn’t my fault.”

Pearce had been working as a marketing writer in a PR firm in San Francisco when her doctor suggested she enroll in a research project at the University of California, San Francisco, aimed at identifying the genes associated with autoimmune diseases, including lupus.

While having blood drawn for the study, Pearce flipped through the program’s enrollment materials. “Being a marketing person, I thought they were . . . Let’s just say they could be improved.”

Pearce’s career as a patient advocate began rewriting medical literature for free to be more easily understood.

She volunteered to re-write the materials for free. “It was 100% selfish, because I wanted them to enroll enough patients to understand this disease better so they could cure it,” Pearce says. But the project ended up benefitting her professionally as well. “It gave me the first taste of what it felt like to write about something I cared about,” she says.

The study’s investigators were so pleased with Pearce’s work they offered her a job. Although it meant taking “a huge pay cut,” she says with a laugh, the position represented a convergence of her personal and professional lives, allowing her to use both the skills gleaned as a writer and the experiences gleaned as a patient for a common purpose: to translate healthcare information into plain language that everyday people can understand.

This need for plain language was perhaps most evident in that research study’s informed consent form.

Working the System

To enroll a patient in a research study, researchers must make clear in writing the study’s purpose, procedures, risks, and potential benefits. They must also lay out practical and legal information, such as the patient’s rights, how their personal and medical information may be used, how long the project will last, and what is expected of the patient’s time and efforts. Together, this set of information forms the basis of the patient’s informed consent.

But Pearce says giving her consent to that genetics research study was anything but informed. Rather, the consent form consisted of pages and pages of legal and medical gobbledygook, the ramifications of which she had no hope of fully comprehending.

The problem lies with too many cooks and not enough empathy.

“With these types of forms, it’s very important that people understand what’s happening,” she says. “But they’re not written to promote understanding.”

The problem, according to Pearce, lies with too many cooks and not enough empathy. Many consent forms, she says, tend to be crafted like contracts rather than informational documents. Legal and regulatory wording sneaks in, as does the highly specialized language of the medical and scientific experts leading the research. What results is a hodgepodge of insider jargon, written at a reading level far beyond that of most adults.

In the process patient understanding gets sacrificed or ignored. “Not out of malice,” she stresses, “but because it’s an afterthought. The irony is, it’s the most important part of the process.”

Pearce felt the genetic research study too important not to participate in, so she signed the mysterious consent form and hoped for the best. She then dedicated her next eight years at UCSF to translating study information into language patients could actually understand and engage with, in part so others like her wouldn’t have to choose between making empowered decisions and contributing to the greater good.

“Life begins at the end of your comfort zone.”

Getting organizations to acknowledge and address these systemic fractures, however, Pearce says, can be akin to pushing a boulder uphill — a boulder that feels extra weighty on the days her own condition flares up.

Pearce has learned to manage her condition, which manifests for her primarily as joint pain and occasional fatigue, by listening to her body — though she admits that, even after 20 years, sometimes her enthusiasm for life can outweigh her listening skills. The invisible nature of lupus also creates a challenge.

“One of the hardest things is that you can look perfectly healthy on the outside but feel poorly on the inside,” she says. “Joint pain and fatigue aren’t visible.”

But knowing how much worse her condition could be, however, keeps Pearce devoted to the task at hand. “I struggle with it certainly. [But] I feel a responsibility to those who have to spend all of their time managing the condition,” she says.

Fighting the System

This past December, Pearce struck out on her own to promote health literacy and patient engagement as a full-time independent consultant. She now works with organizations on the provider, payer, and patient sides of the healthcare transaction — a new angle she hopes will make her efforts even more effective.

“Health is a bottom-line business, period,” she says. “You can only take things so far within those parameters.” In contrast, she hopes the knowledge she’s accrued over her 18 years on the inside will now contribute to helping health systems, communities, patient groups, and policymakers simultaneously from the outside.

Pearce particularly wants to help patients become stronger advocates for themselves, whether that’s in dealing with doctors, understanding paperwork, figuratively navigating care-related systems like insurance and pharmaceuticals, or literally navigating hospital halls.

Pearce’s annotations explain how the system failed Nikki White, an otherwise well-educated, engaged woman who should have been able to navigate it.

But if the deck is already stacked against patients, what can they do to protect themselves? To start, Pearce says, they must accept that healthcare is a game full of wild cards they can’t control.

“If you walk into a healthcare situation where you’re afraid, you’re stressed, you’re ill, or the medication you’re taking has affected your cognitive functioning, your ability to perform tasks and your prose literacy, document literacy, quantitative literacy — that all diminishes,” she explains. “That is why, when you’ve just been told bad news, someone might be talking to you for another 15 minutes, but you don’t hear any of it. It has nothing to do with how intelligent we are, how much school we’ve had. It’s that we’re human beings. This isn’t a case of deficiency on the part of the patients. This is a case of context.”

Unfortunately that context is not built to accommodate patients’ fears, anxieties, and confusions. With many doctors rushed to fit in as many patients as possible to keep the lights on and staff paid, patients are often not afforded sufficient time to absorb and process new, often distressing information, and formulate and articulate appropriate questions. By the time patients are able, it may be weeks before they see their doctor again — at which point, they may be bombarded with new information. The rhythm of the health system, Pearce says, is out of sync with the rhythm of being a human being.

The rhythm of the health system, Pearce says, is out of sync with the rhythm of being a human being.

That’s not to say patients should succumb to feeling powerless and fold, however. Rather, they must recognize these healthcare realities and learn how best to play the hand they’re dealt in order to get the system to work for, rather than against, them. They must be ready to push back.

That means asking questions until they understand the answers, snapping photos of unclear signage, and calling out forms and instructions they don’t understand. It also means being prepared to squeeze the most out of their scant 10-20 minutes of doctor-patient face time.

One tactic Pearce recommends for medical appointments is writing down ahead of time the three questions the patient most needs answered and articulating those questions to the doctor as soon as he or she walks in the door. Doing so sets the agenda for the meeting and guides the conversation to what the patient most needs to accomplish.

Pearce also insists patients start prioritizing their own bottom lines. They must let go of the conservative, deferential approach to medical care and start treating their clinical encounters like any other transaction.

“Would we ever leave the Verizon store without our questions answered about our new phone?” she asks by way of comparison. “No, we’re going to stand there and insist, because we need this phone to work.”

Just like with the phone company, she says, it’s up to the patient to get their medical money’s worth — or throw down their cards and take their business elsewhere. On this point, Pearce pulls no punches. “If you can’t get your needs met with that provider — because that provider is always late, always rushed, doesn’t like to listen, is impatient — switch doctors. You are in control of this. If that appointment isn’t setting you up to succeed, then it’s not worth your dollars or your time.”

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!”

Health & Fitness

The Impossible Walk

Insurance companies tried to confine Stacey Kozel to a wheelchair. Now she’s out to prove them wrong.

Stacey Kozel remembers looking out the window of the hospital. Her legs were paralyzed. She barely had the strength to move her head. “I was looking at the grass and trees outside my window and wondering if I would ever be able to walk outside again,” she says.

Just two years later Stacey is walking through the woods of Virginia, halfway through her journey on the Appalachian Trail.

The Appalachian Trail winds from Georgia to Maine through some of the most beautiful wilderness on the eastern seaboard. Hiking the AT is a hard. Only 1 in 4 hikers finish the 2,142 mile journey each year. But Stacy Kozel is in a league all of her own.

Stacey Kozel and a friend take a break on the Appalachian Trail.

Stacey Kozel and a friend take a break on the Appalachian Trail.

At age 19, Stacey was diagnosed with Lupus, an autoimmune disease that can damage any part of the body. Lupus affects Stacey’s central nervous system.

“Lupus doesn’t always affect the central nervous system, but in my case, since it was so high in the spinal cord, that affected my lungs, my breathing,” she says. “I couldn’t move at all.”

Her last flare up, in March of 2014 was her worst. She spent weeks in the hospital, unable to sit up or lift her head. After months of physical therapy, she regained the strength in her upper body but Lupus left her paralyzed from the waist down.

Lying in a hospital bed, Kozel was inspired to hike. “I’ll never forget those days. I’ll never forget looking out my hospital room. All of the days I’ve been there. I spent a lot of time in there wanting to get outdoors,” she says.

When she left the hospital she had to use a power wheelchair to get around. “I’m a very independent person, and being in a wheelchair meant that I was always relying on other people to help me” she says. Even getting out of bed required help.

When confined to the wheelchair she gained weight, had trouble breathing and felt like she was deteriorating. “I was losing my mind” she says. So she started doing some research. She found out about the C-brace, made by Ottobock. This high-tech brace uses sensors and hydraulics to allow paralyzed people to walk. By swinging their hips, the wearer engages the brace, which then moves the leg. A series of sensors in the bottom of the foot trigger hydraulics, which create a natural leg movement. Stacey has been told that there are only 200 braces in existence.

“When I found out about the C-brace I immediately knew it could change my life,” she says. “But no one else seemed to know about it and they cost $75,000 each.”

Her insurance company didn’t buy it.

“My insurance company didn’t think it was worth the money” she says. “They didn’t think it would work.”

Proving the insurance companies wrong, Stacey works on walking with her C-Brace.

Proving the insurance companies wrong, Stacey works on walking with her C-Brace.

Last August, Stacey used her braces to hike Mount Katahdin in Maine, the northern terminus of the trail. “I didn’t quite make it to the top, but it was so beautiful. I hope that after 2,000 miles of hiking I’ll be able to make it to the summit,” she says.

On the AT, she’s just like any other thru-hiker; she carries all her gear in a pack on her back and camps almost every night. And she’s learning to adapt to life on the trail. “When I started, I was hiking about 10 miles a day and it was awful. Now I do around 20 and it’s become a lot easier.” It still takes her longer than other hikers. “A lot of hikers hike 20 miles a day” she says, “But my day is sun up to sun down. It’s a long day.”

She still has to go into town about every two days, much more frequently than most thru-hikers, to charge her braces. Rain is also a hindrance. “My braces aren’t waterproof so I have to be careful crossing rivers and hiking in the rain,” she says. During her second week on the trail she spent two full days in her tent, hiding from the rain.

Lightening up her load has eased the journey. “I think every thru-hiker over packs at the beginning of the journey” she says. “It’s hard fit your whole life into a backpack.” The first thing Stacey sent home was a generator and solar panels to charge her braces. The generator meant she didn’t have to go into town quite as often, but their heft was too much. And the lighter loads mean more miles every day.

300 miles down, nearly 2000 to go.

300 miles down, nearly 2000 to go.

Still, not a day goes by that she doesn’t think about how nice it would be if she could use her actual legs. “I’m so appreciative of the braces and that I’m not confined to a wheelchair” she says, “but I just wish I could really walk again.”

While the hike can be slow going, Stacey is encouraged by the people she has met on the trail and through social media. “It has become bigger than me and I definitely will make sure I make it, if not for me, then for everyone who has been supporting me and encouraging me and telling me their stories,” she says.

She hopes that her hike will prove to the insurance companies that the braces really do work and can change someone’s life.

“My goal is to bring awareness to these braces and hopefully get more people out of wheelchairs and out exploring the world,” she says. “When insurance companies deny people due to ‘it is not necessary,’ I hope my story will prove the opposite.”

 

Profiles

Finding Healing In Snail Mucus And K-Pop

This health advocate from Staten Island turned her battle with lupus on its head after falling in love with Korean pop culture.

This health advocate from Staten Island turned her battle with lupus on its head after falling in love with Korean pop culture.

Six years ago, if you’d told Tiffany Peterson to massage her face with snail mucus, donkey milk, horse oil, and silkworm cocoons, she “would’ve looked at you like you’re crazy.” Now, Peterson swears by skincare products with ingredient lists that read like they could’ve been concocted in a Hogwarts Potions class. She credits K-beauty, as Korean beauty products are known, with improving the severe scarring and acne from which she’d suffered as a lupus patient, and K-Pop, or Korean pop music, with helping her fight the depression that followed her diagnosis.

In 2010, Peterson was diagnosed with lupus, a chronic condition which causes an overactive immune system to no longer be able to distinguish between healthy and infectious tissues. Soon, in addition to symptoms like joint pain and extreme fatigue, she began to suffer from depression. “The doctor just told me, ‘There’s no cure for this disease,’” she says. “‘You’ll have to manage it for the rest of your life with medications until there are other options. Here’s a prescription. I’ll see you in three months.’ I felt I had no support from my healthcare provider.”

 

After her diagnosis, Peterson went from being “a very social, active, happy-go-lucky person,” the oldest of six children and caretaker of the family, to being unable to walk for a month, and totally reliant on her family for help with basic tasks like eating and using the bathroom. “My laptop was my sole connection to the outside world,” Peterson says.

It was on the internet that she sought the emotional support and lupus education that her doctors had failed to provide. “But everything I read about lupus had a dark, depressing tone,” she says. “Bloggers were just talking about their pain. Each click drove me deeper into a pit of despair.” So Peterson decided to create the positive online support system she felt was sorely needed. She started a blog, Tiffany and Lupus, and Friends Against Lupus, a Facebook community. Soon, people around the world were sending messages, looking for lupus resources and support, or just to say thank you for providing a safe space. Today the Friends Against Lupus community has more than 12,000 members and has won several awards. “It gave me more hope about what my life could be like,” Peterson says.

But in 2012, following an untreated infection that, combined with the steroid Prednisone, led to a temporary but acute psychosis, Peterson was hospitalized for four months. “When I got out, my skin was horrible: I had acne scars everywhere from picking my face in the hospital, a nervous tic. I felt so embarrassed by the condition of my skin and absolutely refused to go outside without a full face of makeup. If you know anything about New York City summers, you know they’re brutal,” she says. “I’m a chronically disabled patient! It’s not as if I could afford to go to the dermatologist for a celebrity skin perfecting procedure! ” Google searches for solutions turned up “all these horrible skin bleaching products.” It was only after Peterson came across “a Filipino YouTuber talking about the wonders of snail cream” named Edward Avila that she found a system that worked.

 

“Cue the Evil Disney Queen finding the perfect concoction for her nefarious plans because that’s exactly how I felt stumbling over this goldmine of skincare secrets!” she wrote on her blog about K-Beauty. Products like Missha First Treatment Essence, Kojie San, a Filipino soap, Missha-brand snail cream (“Missha Super Aqua Cell Renew Snail Cream,” to be exact), and the occasional sheet mask helped heal her skin (“It’s almost like bringing the spa home, a facial in a pouch”) in a way nothing else she tried had.

Through endless streams of skincare tutorials on YouTube, as well as beauty blogs like The Beauty Wolf, run by a fellow “lupus sister,” Coco Park, and The Wanderlust Project, Peterson became a self-taught K-Beauty aficionado. “There are days when I’m still still like, ‘what am I putting on my face?’” she says. “Then amazing things happen and any hesitations I had vanish. With the help of Asian beauty, I’ve managed to fade all of my acne scars, my oily skin has become much more manageable, my skin texture is so smooth.” She’s since hosted events like “A Night of Luxury, Skincare, and Lupus with SK-II,” with one of Japan’s top leading luxury skincare brands.

If Peterson owes a debt to South Korea for its eccentric skin products, her gratitude would also reach out to the entire country for helping her deal with the psychological ramifications of lupus. Although her acne scarring had improved, Peterson still struggled with depression daily. “After my severe hospitalization, I felt like I had lost so many pieces of myself,” she says. “I was trying to find some creative ways to help me remember the joy I once had in my life after my lupus diagnosis.”

Salvation came in a music video for “Fantastic Baby,” by the K-Pop group Big Bang. “It popped up on YouTube one day. Six boys in heavy eye makeup and the most hypnotizing kaleidoscopic attire I’d ever seen. I was like, ‘What is this? Is he wearing a red weave right now?’ There was so much energy and it was contagious. It reminded me of my past self. I just sat there with my mouth open to the floor, watching video after video. That’s how I found K-Pop. My life was destined to change from that single moment.”

 

At 30, Peterson is now a healthcare consultant, blogger, and activist advocating for lupus awareness. She’s an ambassador for the SLE Lupus Foundation, the Alliance for Lupus Research, and the Lupus Research Institute, and serves as a panelist in healthcare summits across the country. Her goals for spreading lupus awareness are many, but above all, she wants to teach fellow patients that the disease doesn’t have to consume their lives. Beyond that she aspires to educate healthcare professionals on how they too can increase awareness, education, and improve communication with their patients.

“Life with lupus has been really challenging, especially during my early diagnosis days. I’ve gone through so many life changes, it often becomes difficult to separate lupus from who I am. But it’s just a part of me; it’s not all of me me – as in, I have brown eyes, I have black hair, and also I have lupus,” she says. “Just because I talk about it a lot, doesn’t mean it’s my whole life. I speak about it often because I want others to be aware of the signs and symptoms. There are too many frustrating diagnosis stories like mine. By speaking up I hope to help change that experience for others. That’s why I also share my other interests and experiences in life. When you have a chronic illness, it’s hard to focus on anything else. As soon as you wake up, you’re in pain. You have daily reminders that you’re sick. I’ve learned that it’s extremely important to find something, anything that brings you joy. Whether it’s a new hobby or repurposing an old one so it fits your current lifestyle and is better suited to your needs. It is possible to smile after lupus, I’m living proof of that.”

Photos: Timothy Dollard