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Chronic Illness Essays

An Ode To My Asthma Inhaler

How could I have spent so many years looking down on what just might be one of the greatest inventions ever?

The past four months have been hard on me. I took the leap on a major career change, then lost two relatives within days of each other. I didn’t handle the stress well: I drank too much, and started smoking again. By December, my immune system was completely wiped. I spent much of the month fighting off various colds and viral infections while still getting up for work everyday to keep the money rolling in.

When 2019 rolled in, my asthma–which I’ve long tried to ignore whenever possible–was in a bad way. I spent a sleepless night gasping for breath against a terrifying flare-up, which was so bad I was almost hospitalized. The experience shook me, but it gave me a newfound appreciation for a device I’d long been ignoring: my rescue inhaler. Without it, I may not have survived that night. Yet for years, I’d been overlooking it.

How can a person come to overlook something so critical to their health that it regularly saves their life?

How can a person come to overlook something so critical to their health that it regularly saves their life? I don’t know, but after my latest attack, I realized I’d been almost foolishly blasé I’d been about my asthma for years, recklessly taking my  inhalers for granted and pretending I didn’t need regular medication to manage my symptoms, as if I hadn’t been severely asthmatic since the age of 7.

The absurdity of what I was doing hit me like a comically oversized ACME anvil when my doctor, upon following up my asthma flare-up with an emergency check-up, asked me an obvious question: Have you been using your daily inhaler to control your symptoms?

Of course, I hadn’t been. Worse, I’d been poking the great wheezing bear of my condition by exposing it to all my worst asthma triggers: stress, cigarettes, and exhaustion. There’s only so long you can play Russian roulette until you pull the trigger on a live bullet, but when it was finally my turn to take the bullet, my asthma inhaler took it for me.

There’s only so long you can play Russian roulette until you pull the trigger on a live bullet, but when it was finally my turn to take the bullet, my asthma inhaler took it for me.

It’s testament to what an amazing invention the emergency inhaler is, and how incredibly well it works, that most people consider asthma no big deal, when it is potentially lethal. In a way, maybe it works too well, lulling people like me into a false sense of security, even as we manage a condition that could easily end our life.

Or maybe not. As a kid, I remember wanting to pay as little attention to my asthma as possible, wheezing through whole days at school instead of risking embarrassment taking a puff in front of my fellow students. I suspect that some of that can be attributed directly to how pop culture regularly misrepresented asthma as being a disease of the feeble and the weird: a health condition suffered only by social outcasts who would probably die if they were to attempt even a single push-up. And asthma inhalers? A comedy prop, not a life-saving medical device, to be used  used exclusively by the hapless nerds of shows like Saved by the Bell and Boy Meets World.

Asthma doesn’t make me weak, it’s just something I have to manage.

It’s the stigma around health that most people suffering from chronic conditions experience  which encourages us to ignore our conditions whenever possible, until it is too late. In the case of asthma, I associated using my inhaler with being vulnerable, helpless, and pathetic, so I suffered rather than look weak. By ignoring my inhaler, even when I needed it, I pushed my identity as a person with asthma as far back as possible, refusing to acknowledge it until my symptoms became so bad, I could have died.

I’m now fighting like crazy to try to change my attitude towards my asthma. I’m trying to take better care of myself, not only in avoiding my asthma triggers, but taking my inhaler with me wherever I go. And whenever I feel shame about my condition, I try to remind myself that asthma doesn’t make me weak, it’s just something I have to manage.

And as I work to change my attitude towards asthma, I find myself looking more lovingly at the rescue inhaler I’ve so long wanted to distance myself from. For years, I subconsciously viewed it as a testament to my own weakness and vulnerability, but now, I’m starting to see it as something that gives me strength: a totem of power an item that makes me feel at ease wherever I am in the world, just knowing that it’s in my bag with me. It’s pushed me through breath-restricting thunderstorms, savage chest infections, lung crushing panic attacks, and the final laps of childhood athletic competitions.

An asthma inhaler is truly one of the best inventions of all time.

An asthma inhaler is truly one of the best inventions of all time. Being ashamed of it is as ridiculous as being ashamed that Superman had to save you from a burning building, because you couldn’t fight the fire yourself. So I’m done with shame. From now on, I’m going to be okay with having asthma, and celebrate my survival everyday, giving quiet thanks to the two inhalers that have continued to keep me breathing – even when I’ve forgotten to show them any love.

Chronic Illness The Good Fight

How Climate Change Is Hurting Our Health

More heart attacks. Worse asthma attacks. Year round allergies. And tropical diseases everywhere. That's just a taste of what climate change is doing to our health.

Climate change can seem like a problem so much bigger than an individual person. But even outside of flooding coasts, hotter summers, and freakier storms, climate change is deeply impacting our health on an individual level. But just how much? Enviromedics: The Impact of Climate Change on Human Health, a new book from two experts on emergency medicine, addresses just that million dollar question.

“If things are going bonkers weather-wise in our neighborhoods and regions it doesn’t take much imagination to understand that it affects our health,” explains Enviromedics co-author Dr. Jay Lemery, an associate professor of emergency medicine at The University Of Colorado, who wrote his book alongside his mentor Dr. Paul Auerbach, a professor in the Department Of Emergency Medicine at Stanford.

And those effects, which Lemery has seen first-hand as part of his own practice, can be severe, such as pre-existing conditions like asthma exacerbated by extreme heat, or allergic reactions that last for whole seasons.

The book takes readers “bedside” to a mixture of scenarios extrapolated from the authors’ own practices: patients with preexisting conditions exacerbated by extreme heat; allergies previously bad for short periods lasting whole seasons; heat-induced asthma attacks.

In myriad ways, some discreet, others overt, climate change imperils global health. “Ecosystems are suffering and we are inextricably linked to the places we live,” says Lemery. We spoke to him to learn more.

How did you go from emergency medicine to climate change science?

A man with a beard wearing a knitted cap and a blue sweat shirt, standing in front of glacial waters on a rocky beach.

Dr. Jay Lemery wrote Enviromedics because he sees climate change as the greatest health crisis of our time.

Out of residency, I took a job at Weill Cornell Medicine teaching wilderness medicine. It was ‘how do you take care of people in remote austere places?’ ‘How do you practice without advanced technology?’ I had been a resident during 9/11 and started at Cornell in 2004; disaster medicine was everywhere. I really dug it because it kept true to the core principles of medicine, of innovation and physical diagnosis. Somewhere in there I began to think about climate change and environmental degradation. The science was being politicized. I thought, this is crazy. I did a lot of contract work for the National Science Foundation supporting Arctic research, tons of which is climate related. I was also a past president of the Wilderness Medical Society, a nonprofit academic organization. We would help establish the Everest base camp medical clinic during climbs.

We were in these spectacular places, supporting researcher’s health, supporting the science, and I just noticed this glaring absence of the medical community in this conversation on climate change when it is so clearly affecting our health. That was my big moment.

“I just noticed this glaring absence of the medical community in this conversation on climate change when it is so clearly affecting our health.”

What did you think the conversation was missing?

So much of the conversation around climate change is about polar bears or abstract concepts like parts per million of carbon dioxide which, if you study this stuff you know is a big deal, but for the layperson means absolutely nothing; just a number, literally, out of thin air. I thought, we have to do better.

As doctors, me and Auerbach know sickness. We’ll be seeing a lot more of it in the future because climate change will be a driver for sickness. In our book, we took composite vignettes of the patients that we see everyday. These are not specific cases but are the natural extension of the data we’re seeing. We know extreme heat drives morbidity and mortality for people with preexisting illness; we know what heatstroke looks like; etc. So then instead of talking about polar bears you’re talking about your parents’ risk of chronic lung disease and your kids’ risk of asthma.

My own sister lost her house in Vermont during a hurricane in 2012, when all of northern New England got nuked by extreme rain. A little beautiful stream diverted into her living room, turning into a river. These are real things. Talk to people in California about their wildfires. The air is degraded; people are losing their homes; huge swaths of land are gone; people are dying. There’s nothing healthy about that.

“The air is degraded; people are losing their homes; huge swaths of land are gone; people are dying. There’s nothing healthy about that.”

How is climate changing making people sicker?

Heat waves can kill people but very few people die from heatstroke, relatively (although we’re seeing more more of that this summer in India and the Middle East, where you have very vulnerable populations who just cannot cool down). It’s really the people with chronic obstructive pulmonary disease or heart attacks or congestive heart failure who die. Heat makes their bodies work harder. When you’re walking around on a hot day, your pulse goes up, you’re working harder to sweat. That’s enough to push someone over the edge.

The cover to Enviromedics: The Impact of Climate Change on Human Health.

Extreme weather, too. Hurricanes kill people and destroy infrastructure. Look what happened in Puerto Rico and Houston. In Houston, a tremendous downpour caused catastrophic flooding and people were killed and internally displaced. In Puerto Rico you had a relatively vulnerable place get pummelled (I was part of a study that pointed out that the death rate was in the thousands, not 64 as the government said at first). Try living in Puerto Rico without power for nine months; that’s a big hit to your health and wellness.

Another one: Part of the bedrock of public health is that we separate the areas where we eat, go to the bathroom and grow food. But when we have a heavy downpour, which we’re seeing more of, you end up blending all those places. That’s water insecurity. Even in Boston or New York you can’t drink the water for a few minutes after an extreme downpour because it overwhelms the sanitation pumps. Now that’s just a couple minutes of inconvenience but in many places in the world your food is compromised; sewage has contaminated your crops. That’s where you get these horrible diarrheal diseases. Diarrhea is still one of the biggest killers of children across the world. Water insecurity is a huge deal.

What are the biggest climate-caused or exacerbated health issues?

Even among climate scientists, there’s debate. Is it extreme heat? Is it the rise of sea level which will make coastal living impossible? I think that, between extreme weather and the increase in temperatures, climate change will undermine our food supply. Food security will have the biggest health effects worldwide because it will undermine our access to nutrition. Lack of nutrition is a wonderful way for disease to thrive. That’s going to be the biggest, I think.

“Food security will have the biggest health effects worldwide because it will undermine our access to nutrition. Lack of nutrition is a wonderful way for disease to thrive.”

What are some of the more subtle ways in which climate change affects health?

Take allergies. The aeroallergen ragweed and pollen levels are going bonkers because they’re responding to higher CO2 levels. Seasonal allergies are lasting longer than they have before, particularly in northern cities. In Canada there’s good data which says ragweed allergies used to last for only a couple of weeks a year; now it’s months. That doesn’t kill people. But if you suffer seasonal allergies you’re incapacitated for the time you’re outside. You’re miserable.

Ticks and mosquitoes, which carry tropical diseases like zika, yellow fever, dengue and malaria, are moving higher in latitude and altitude. In the East African highlands people who have been historically spared from malaria are now susceptible. It’s a double whammy: more people getting malaria and those getting it have no tolerance. We’re going to be seeing more of this in the U.S. as well. Lyme now exists in all fifty states; that’s unprecedented. There’s no mystery to it. Bugs like warmth.

Yet, if you think about what’s happening it’s not just global warming. Although rising temperatures is one of the drivers what we’re actually witnessing is a global energizing. We are energizing a very complex system, the planet. I’ve had people in climate communication say not to use that word because it’s too optimistic. Katharine Hayhoe out of Texas calls its global weirding, which I think is very effective. It’s really what we’re seeing. The weather is just wacky, with more crazy anomalies we haven’t witnessed before. Climate change is crazy town.

“Climate change is crazy town.”

What sorts of climate-related issues do you see in your own emergency room in Denver?

On hot days we see tons of people come in with chest pains, shortness of breath or exacerbations of their chronic illness. Extreme heat exacerbates preexisting conditions. On those days with heavy wildfires we’ll see exacerbations of asthma. Researchers who look at these things aggregately are able to see spikes from these weather anomalies.

That issue of causality is interesting. When can one definitively blame a health outcome on climate change?

“Let’s not be naive.”

You don’t need direct causality to be a threat multiplier. There are great epidemiological methods to tease out different variables–if you look at our book it’s all right there. Causality, when you see it, is important. But it’s also important to acknowledge that we cannot definitively prove this. For example, the 2003 heatwave in Paris was beyond historical experience. Fourteen thousand people in France died, 32,000 in northern Europe, a very well resourced part of the planet. Can I definitively say that was due to climate change? No. But what you can say is that this heatwave is beyond historical experience and that we know we’ll be seeing more in the future. Undoubtedly the data we’re seeing from temperatures across the planet are driving more extreme heat events and we know that this is a threat multiplier for health. Let’s not be naive.

You can purchase Enviromedics: The Impact of Climate Change on Human Health on Amazon.

Chronic Illness Profiles

No Breath To Spare

Jane Nelson's chronic breathing disorders might have required a dual lung transplant, but it hasn't stopped her from living her life.

When Jane Nelson, 30, dates, she can’t meet for sushi. Girls’ nights out no longer entail a bottle of red in a cozy Manhattan wine bar. And – a blessing and a curse – Nelson’s days of navigating New York City’s teeming subway system are over.

A culinary school grad who works in the wine industry, Nelson – the picture of health as a kid – never dreamed a nagging, dry cough would lead to months spent homebound tethered to an oxygen tank, and then a double lung transplant. Now, two years after taking an emergency flight to get her new, donated lungs, Nelson is still figuring out how to navigate one of the world’s largest cities as an immune-compromised woman who wants to date, socialize and move up in her career.

“I’m at that age when everyone’s getting married around me, they’re having babies and they’re buying a house,” Nelson said from her home office in midtown Manhattan. “The biggest part of my life is taking care of my lungs. You feel derailed.”

It’s a feeling Nelson acknowledges, but she doesn’t let it consume her. She won’t feel sorry for herself. Not when she forgoes a movie night at her sister’s in Brooklyn because she can’t spend $60 for cab fare there and back. Not when she feels awkward explaining to acquaintances she can’t shake their hand. And not when she passes a deli craving a crisp apple or thick pastrami sandwich. She won’t touch fresh fruit and veggies and cold cuts; they’re ideal hosts for bacteria and can easily get her sick.

“I never really had the sense of, this is so unfair, why me,” said Nelson, who graduated from the Culinary Institute of America at Greystone in Napa in the midst of her health journey. “I’m lucky my mind didn’t go there. My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?”

“My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?’

Nelson, who’s always had a passion for cooking, planned to work in the food industry in California after graduation. But then her lungs gave out and she moved back to New York to be closer to family. Accepting their help throughout her surreal journey didn’t come easy. As the fiercely independent middle child in a family of five, she struggled with admitting she needed support. But without it, she said, she wouldn’t be here today.

It was 2011 when Nelson took the train home to upstate New York for Christmas with a chronic cough. At the time, she was working in finance in Manhattan. She spent hours in her parents’ kitchen making a cheesecake, mixing cocktails and coughing. Her parents and siblings were concerned, but her doctor said it was likely allergy-induced asthma.

Back in the city, Nelson started noticing she was out of breath when running. Then, in February, her left lung collapsed. A biopsy revealed no clear cause. Doctors said sometimes lungs collapse in tall, lanky people. They operated on her, attaching the top of her lung to her chest wall, and then sent her on her way.

“I remember asking, ‘Do I need to change anything about my lifestyle?’ and they said ‘No, go on living your life.” So five months later, Nelson picked up and moved to California to pursue her culinary school dreams.

Four months after her move, Nelson was carrying a sheet tray with 20 pounds of Boston butt across the culinary school kitchen when she felt a crackling in her chest. She made her way to urgent care to find out her other lung had collapsed. They performed the same surgery to reattach her lung. This time, they found the cause.

Nelson on stage at a conference for the Pulmonary Fibrosis Foundation.

“I was coming out of sedation, and the pulmonologist was standing over me. He said, ‘You have something very serious. You have interstitial lung disease.’”

Nelson’s condition is actually a group of lung diseases that cause progressive damage to lung tissue. In many cases, exposure to toxins like asbestos or coal acts as a trigger. Nelson had neither. After diagnosis, life expectancy is three to five years.

Lying there in recovery, Nelson was silent. She stared up at the doctor. “He went on, and he said, ‘The last time I saw someone with a case this serious, it ended up with a lung transplant.’”

Over the next several months, Nelson continued to deteriorate. It was hard to breathe. But she was determined to graduate. She booked doctor appointments with specialists in San Francisco in the mornings, then drove back to Napa for school in the afternoons and evenings. “Missing class was not an option,” she said.

Four months after graduation, she flew home. “I was trying to face it all myself, but then I recognized I needed support,” Nelson said. “It’s okay to need help.” Her lungs were so weak she couldn’t fly without an oxygen concentrator, which helped her breathe. On the flight, the machine prompted fellow passengers to stare. Her heart raced. What if the machine’s battery died?

“It’s okay to need help.”

In New York, she found a job at a wine company and saw a new doctor. Her lungs got worse. “Everyday activities were getting harder and harder,” she said. “Different pieces of my life were being stripped away.” A year after moving back to New York, Nelson needed extra oxygen while exercising and sleeping. Her sister and brother-in-law pushed her to go to the gym with them; exercising would help her lungs.

Soon, she needed oxygen 24-7 and was tethered to a machine the size of a mini-fridge by a 50-foot tube. “I never left the house,” she said. She was using so much oxygen she couldn’t cook; turning on her gas stove would have been dangerous. By this point, Nelson was on a list for a double lung transplant at Columbia University, but her chances didn’t look good. She was running out of time; her doctor suggested she try another facility. She chose Duke University.

After her transplant, Nelson is happy and healthy.

The December morning Nelson, her mother and sister planned to drive to Duke to get Nelson tested and added to their transplant list, she couldn’t breathe. Her left lung had collapsed, again. An emergency flight took her to Duke, which added her to their transplant list on Christmas Eve 2015. Two weeks later, she had two new lungs.

It’s been two years since her surgery, and Nelson no longer needs oxygen. She was promoted and she’s dating again. She’s stopped worrying about potential suitors’ reactions to her condition. She hopes to get married. Having children is another matter.

She doesn’t want to pass the disease on, though it’s unclear whether it’s genetic. She’s also nervous her health could falter again, leaving a child motherless. “That’s something that gnaws at me,” she said.

Since her surgery, she’s organized events to raise money for the Pulmonary Fibrosis Foundation (PF is a type of interstitial lung disease), has spoken about the shortage of organ donors—New York has the third lowest organ donor rate in the country—and is writing a memoir. She’s taken vacations to Paris and Nashville, and she applied to get her MFA. She’s stayed in New York to be close to her family. “I want to get everything out of life that I can,” Nelson said. Her disease took her lungs, but it’s not stopping her from living.

Chronic Illness Profiles

Breathing Free In The Most Asthmatic City On Earth

With some of the most polluted air on the planet, living with asthma in Mexico City requires equal parts diligence, determination, and technology.

Comic book writer Alejandra Gámez has lived in Mexico City for most of her life. When she was four, she moved to the city without any known health problems;  24 years later, she developed a case of bronchitis that wouldn’t go away, which eventually turned into adult-onset asthma. “From that moment on, I realized that my life would never be the same.”

When Jessica Newman moved to Mexico City from Washington D.C. two years ago to be with her partner and advance her photography career, she suddenly struggled with her asthma more than she ever had.  Moving to Mexico City “really took a toll in the beginning” she says. “I was sick all the time, I couldn’t work out and I had zero energy.”

Alejandra and Jessica are just two of the thousands of asthmatics–both lifelong and adult-onset–living with asthma in Mexico City.

Life in Mexico City means that comic book artist Alejandra Gámez must constantly be managing her asthma medications.

The air pollution in Mexico City is among the worst in the world. In May 2016, Mexico City was in a near state of emergency because of high levels of ‘short-lived climate pollutants’ (SLCPs). Since then, Mexico City has reached unhealthy levels of air quality almost everyday. The Interamerican Association for Environmental Defense (AIDA) says that it is one of the most urgent human rights and health issues in the city.

Air pollution is particularly bad in Mexico City because of its geography. The capital rests, surrounded by mountains, at an elevation of 7,000 feet. When it doesn’t rain and there is no wind, the contamination is trapped. And there’s a lot of contamination: with 2.1 million people living in Mexico City, it has the worst traffic congestion in the world, according to the TomTom Traffic Index.

That results in a lot more asthma. Astrid Puentes, an environmental lawyer from AIDA’s Mexico City office says, “Air quality impacts every single person in Mexico City. It’s the most democratic impact that we have.”

When the Air Quality Index is low, the air above Mexico City turns practically  brown.

Especially if you’re an asthmatic, a big part of daily life in Mexico City is checking the Air Quality Index. Jessica shows off the app she uses on her phone, Plume: “Right now, it’s telling you not to run outside, take it easy on a bike, and not to take your kids outside… it’s great to see it, but it’s also gross.”

In Mexico City, the Air Quality Index is almost a second weather gauge. “Mexico City is one of the only places, that if you are a mom and your child is having a birthday party, you have to think about if it’s ozone season,” says Puentes.

Alejandra agrees. “You have to be careful and not expose yourself on days with bad air quality,” she says. “When air quality decreases, it affects us all. But people with asthma and bronchi infections are already predisposed to react. Your body reacts to something that is attacking it – asthmatics just have it worse.”

Managing asthma is a full-time job in Mexico City. Back in D.C., Jessica didn’t have to use her inhaler; now, she takes it every morning, and throughout the day as needed. She sleeps with  two air purifiers in her bedroom, and she changes her clothes before going to bed so she doesn’t bring pollutants with her. If she feels an attack coming on, she takes her rescue inhaler, jumps in a hot shower, and tries to calm down.

One of the many apps Mexicans use every day to measure the Air Quality Index.

The constant fear of an attack can be traumatizing in its own right. As Jessica describes it: “it feels like drowning above land. It takes a lot of mental fortitude to calm down with something like that… I do feel like it’s knocking years off my life, living here.”

When Alejandra travels outside of Mexico City for book fairs, she really can tell the difference the city’s pollution is having on her health. “With the clean air, I can walk and never have an asthma crisis. But in Mexico City when the air is bad, I can have an attack when I reach the top of a staircase.” She’s considering moving out of the City, just for the sake of her lungs.

As for Jessica, as an active photojournalist, managing her asthma is a major part of her life. She’s learned how to ensure that it doesn’t affect her work, always being prepared while on assignment. “Most of the time I forget I have it,” Jessica says. But life in Mexico City means that asthma is never far from her mind for long. “[Asthma] is a huge part of who I am,” she says. And when pollution is high, and she’s struggling for breath, Jessica realizes just how bad it can be. “I forget that [asthma] can be fatal.”

Profiles

Art That Makes People Think: “This Is How I Feel.”

Medical student-turned-designer Josie Vallely uses collaborative visual art to tell the unheard stories of people with health conditions and to affect broader social change.

In her third year of medical school, Glaswegian Josie Vallely made a sobering discovery: she didn’t much like medicine.

Vallely was good in science and enjoyed working in big teams with different kinds of people, but she didn’t like the culture of medicine. She didn’t like the unreasonable hours. Most of all, she didn’t feel like she was in a position to be as useful as she could be.

“When you’re doing hospital medicine, you have to consider the whole person, but often you’re not looking much further beyond that person. You’re not looking at a societal or cultural perspective,” she says. “There is lots of problem-solving, but it’s on a minor scale. I was more interested in major problem-solving.”

Headshot of Josie Valley. Photo: Alice Myers

Headshot of Josie Valley. Photo: Alice Myers

Plus, she adds with a laugh, “I couldn’t do the hierarchy. I just wanted to do my own thing. You definitely can’t do your own thing in medicine.”

Vallely’s desire to do her own thing and achieve impact at scale has resulted in a career and practice uniquely her own. Combining her natural interests in story and social justice with fine-arts methods and commercial art sensibilities, she creates socially motivated visual art focused on illness narratives, blending original production with remixing, autonomy with collaboration, and personal expression with universal experience. At the root of it all lies her desire to combat stigmas associated with health conditions, promote empathy, and make visible people too often overlooked.

But first, she needed to recover from medicine.

“I left medical school in a bit of a crisis,” Vallely says. “I didn’t know what I was going to do. It took me a while to find my feet again.”

I left medical school in a bit of a crisis… It took me a while to find my feet again.

To do so, Vallely turned to her lifelong interest in the arts and enrolled in a foundational arts course, a decision she describes as self-care. “I wanted to do something that would make me feel good,” she says.

That yearlong dose of personal medicine both succeeded and backfired but in a good way. “At first I really shunned anything to do with health in my work,” she says. “I wanted to move away from medicine and not think about it. But as I started to explore my art practice, I found that what I was interested in was people with [health-related] narratives, and bringing those into the limelight and exploring them visually. People’s health was a narrative that wasn’t being discussed.”

The desire to bring health and arts together led Vallely to pursue formal training at the Glasgow School of Art, where she earned a Master of Design degree specializing in illustration in 2014. As her capstone project, Vallely chose to explore the experiences of people with chronic obstructive pulmonary disease (COPD), a progressive, often fatal lung condition characterized by shortness of breath, fatigue, and a persistent, chesty cough. As someone with asthma, Vallely is particularly passionate about lung health issues and describes COPD and related lung conditions as “a really stigmatized sector of illness,” often rooted in issues of class and poverty.

Derek's Story by Josie Valley.

Derek’s Story by Josie Valley. Valley often makes abstract art about asthma and other breathing issues.

“If you’re somebody that can’t get up a flight of stairs without taking a break, people make really snap decisions about what kind of person you are,” she says. “People aren’t aware of the scale of lung conditions, that there are so many people with really debilitating lung conditions because they’re trapped at home. They’re not out in society at large. You don’t see them.”

Through bold shapes and liberal use of color, Vallely strives to make these hidden people visible, to step away from judgment and the binary categories of illness and wellness toward the universal. “It’s about exploring everybody’s interactions with health and illness, and acknowledging that we all work with both of them at any time in our lives,” she says.

To find this balance, Vallely eschews didactic directives and literal depictions of disease, opting instead to use abstract images to express narratives of health conditions through atmosphere and metaphor. By working through abstractions, she hopes “to tell people’s stories without taking their stories as my own and leaving them behind.”

If you’re somebody that can’t get up a flight of stairs without taking a break, people make snap decisions about what kind of person you are.

“A lot of artists who make work about health work from a very personal place. That’s not something that I’ve ever done,” Vallely says. “But the fact that I have direct experience of chronic conditions, both physical and mental health conditions, means that I have empathy with the people that I’m working with. I don’t reduce people to their conditions. I understand that that’s just a tiny part of your life experience. Even if you have a condition that from the outside might seem to take a lot of your time and energy, it doesn’t mean that that’s the sum of you. So I don’t work from my own personal experience, but I do work from my own viewpoint, which is influenced by my experience.”

By finding that balance between her own viewpoint and others’ experiences, Vallely strives to create visual work that resonates both for people with a particular condition and those without.

Josie Valley at a workshop. Photo: Sandra Franco.

Josie Valley at a workshop. Photo: Sandra Franco.

Take the works from her Master’s degree, for example. For those pieces Vallely reached out to people with COPD and assembled a scrapbook of participants’ experiences gathered from emails, interviews, photographs, and journals. She then translated the whole into abstract visual images. The end result was a series of large, dark landscapes, tinted with swaths of color, often with little lightness or relief.

“They’re quite abstracted,” Vallely says. “Lots of people told me that they couldn’t really see how they were related to COPD in any way.”

But then one particular man came to a viewing of the work. “There was a guy from Alloa in Clackmannanshire, which is quite a small, old industrial town in Scotland,” she says. “He’s looking over [a big, spacious, dark landscape], and he’s like, ‘That’s exactly how I feel when I’m having a flare-up. That is how I feel.’”

By prioritizing the experiences of people with particular conditions, Vallely hopes to generate a response that translates for a broader audience. “For someone who’s not experienced what it’s like to be breathless and trying to get up the hill, or not able to get out of your chair because you can’t breathe, it’s hard to put yourself in that place. The idea with some of my work that’s more abstract is to prime you to be open to that experience. The image might not bring up memories of a similar experience, but it might bring up emotions of feeling trapped or anxious or feeling grief. Those are similar emotions that people will go through when they’re dealing with a diagnosis, especially with chronic, long-term conditions that there’s no cure for.”

Her approach is subtle, which is unusual in itself. “A natural route in visual communications with public health is shock tactics or didactic information-giving,” Vallely says. “I’m much more interested in people coming to their own conclusions. [The art] doesn’t tell people to do anything. It gently asks them to consider elements of life that they mightn’t have thought about before.”

"That's exactly how I feel during a flare-up. is is how I feel."

“That’s exactly how I feel during a flare-up. is is how I feel.”

For all her desires for autonomy, Vallely rarely works completely alone. Rather, she works in conjunction with such organizations as Eczema Outreach Scotland, ASCUS Art & Science, the British Lung Foundation, and the Mental Health Foundation, and bases her work off narratives collected through collaborative, participatory experiences that viewers of the final works might never see.

Last year, for example, Vallely and another artist led workshops around Scotland for children and families affected by eczema (which affects her, too). Eczema is an itchy chronic condition that can result in both physical and emotional trauma, affecting both people’s appearance and ability to sleep (and therefore the quality of their waking hours as well). More so than the end result, Vallely’s goal was to bring these children together to explore their lived experiences of eczema by way of fun, messy activities in a safe, social space. The final work was composed of the drawings made by these children and showcased at the Edinburgh International Science Festival this past spring.

Even if you have a condition that from the outside might seem to take a lot of your time and energy, it doesn’t mean that that’s the sum of you.

“I’ve always enjoyed the process of bringing unexpected stuff together,” she says. “I like people to feel like they’ve produced this stuff, and I can bring it together in a way they didn’t expect or believe would be possible.

Medicine may not have been her calling, but Vallely credits her time in medical school for giving her a better understanding of the scale and scope of the structural and cultural inequalities embedded in many health issues. Through her work she hopes to expose people both inside and outside the medical community to a wider variety of patient-side narratives and combat the conscious and unconscious biases that affect both the quality of life of people with long-term conditions and the quality of care and support they receive.

By reaching beyond individual patients, Vallely hopes to find a usefulness both for herself and for her art. Rather than create art for art’s sake, she creates to affect larger change, starting from her own local community outward.

“I don’t see my artwork as being inherently useful to people,” she says, “but I see me being myself and being a proactive and happy member of my community as being inherently useful. That’s not what I was when I was studying medicine. But that is what I can be when I’m working with lots of different people doing work that I love.”

Chronic Illness Histories

In Search Of Lost Breaths

A lifelong struggle with asthma profoundly influenced the art of Marcel Proust, author of In Search Of Lost Time.

A lifelong struggle with asthma profoundly influenced the art of Marcel Proust, author of In Search Of Lost Time.

A thick beard masking his sunken cheeks, the dying 51-year old Marcel Proust sat in his bed, propped up by pillows, covered with blankets. Sleeping during the day, and working at night, in a room with cork-lined walls to stifle noises, Proust was working on the page proofs of the fourth volume of his one-and-a-half-million word novel À la recherche du temps perdu, or In Search of Lost Time.

The autobiographical novel depicts an unnamed “narrator” who, like Proust, lived a comfortable life, hobnobbed with aristocrats, was a writer, and suffered from asthma. This illness affected Proust deeply, and, in many ways, helped forge his way of looking at the world, and his way of writing about it.

Critics have suggested that Proust’s writing was directly affected by his asthma. Proust is known for his very long sentences, the longest being 847 words. As if, perhaps, he was afraid that if he stopped, he might never draw another breath. Walter Benjamin, in The Image of Proust, said that the author’s asthma “became part of his art – if indeed his art did not create it. Proust’s syntax rhythmically and step by step reproduces his fear of suffocating.”

Proust’s syntax rhythmically and step by step reproduces his fear of suffocating.

Marcel was stricken with his first asthma attack at the age of nine when walking with his family in the Bois de Boulogne on the edge of Paris. He suddenly began gasping for air, suffocating; nearby, his parents watched in horror, unable to help him. Even though his father, Adrien, was a doctor, there was nothing one could do for asthma attacks in 1881. From that day on, Proust suffered from severe asthma and lived in terror of further attacks.

The young Marcel was afflicted by both hay fever and asthma, then considered diseases of the rich; only the well off suffered from them. Modern research suggests that these conditions can be caused or exacerbated by excessive hygiene (the “hygiene hypothesis,” which suggests that excessive cleanliness causes our immune systems to overreact). Proust’s father Adrien was a hygienist, who wrote books about public hygiene, and defending Europe from cholera and plague, and who believed in the power of long walks and strict regimens to maintain health.

A look at Marcel Proust’s manuscript for In Search of Lost Time.

Marcel was subjected to the treatments of the time, in an attempt to desensitize him to pollen. One of these was nasal cauterization, which he underwent more than one hundred times. After these painful treatments had been completed, he was told that he could go to the country and would be free from the symptoms of hay fever. He did so, and as soon as he neared some blooming lilacs, suffered a severe asthma attack, with his hands and feet turning blue until he was returned to Paris.

Asthma was poorly understood at the time, and was thought to be a purely psychosomatic illness. While stress may trigger symptoms in one who already has asthma, and may also exacerbate attacks, they are not the cause of the disease. Proust was branded as having “neurasthenia,” a catch-all diagnosis for those with diseases doctors didn’t understand, including fatigue and depression. Proust became a textbook hypochondriac, suffering from a palette of symptoms affecting his breathing, his stomach, sinuses, bowels, and joints. But he documented them in detail in his massive correspondence, and it seems now, in hindsight, that his illnesses were real, and serious. For example, in 1900, he wrote to his mother that he suffered “…an attack of asthma of unbelievable violence and tenacity-such is the depressing balance-sheet of my night, which it obliged me to spend on my feet in spite of the early hours at which I got up yesterday…”

A sensitive child to begin with, Proust became more insecure as those around him suggested that the asthma was just in his head, that he merely craved the tenderness of his mother. One of the earliest scenes in his novel describes an evening when the narrator was unable to sleep. Charles Swann was dining with his parents, and the boy couldn’t sleep unless his mother came to kiss him goodnight. Proust’s illness led him to adapt his life to avoid symptoms, but it also helped him become hyper-observant. He didn’t shun society, but when he did go out, he acted like a sponge, recording, in his mind, every event, every person’s expressions and words, so he could create his characters.

Asthmatics often sleep poorly, and have attacks at night; Proust was no exception. He shifted his schedule so he slept during the day and worked at night. And he complained of other ailments as well: joint pain, digestive issues, fevers, and more. Long seen as just a hypochondriac, Proust may have suffered from more than just nerves. Researchers have suggested he may have had Ehlers–Danlos Syndrome or Familial Mediterranean Fever, both hereditary illnesses, neither of which could have been diagnosed at the time.

Proust smoked stramonium cigarettes like these, which were (ludicrously) believed to help cure asthma during his lifetime.

Doctors were of little help to him – he mocked their incompetence in his novel – and Proust self-medicated his asthma, drinking large quantities of coffee, smoking stramonium cigarettes and inhaling fumigation powders that were believed to help clear the lungs, and taking laudanum (an opiate) and veronal (a strong barbiturate) to sleep. The latter was once almost fatal to him, when he, or a pharmacist, once miscalculated the dose, and he took ten times what he should have.

Proust’s weakened lungs eventually failed him. After a night out at a chic party – he was always worried about catching a chill, and did so on this evening – he developed bronchitis and then pneumonia. Several weeks later, the labored breathing he had struggled with for most of his life ceased.

Of course, Proust’s work has since proven to be immortal. In Search of Lost Time is widely hailed to be a masterpiece, while Shakespeare scholar and literary historian Harold Bloom has called Proust one of the great authors of all time. His style and his art, though, were so heavily influenced by his lifelong battle with asthma, it’s possible that if Proust had been born with healthier lungs, he might not be remembered today. Could there be a more profound testament to how our conditions shape us?