Disability The Good Fight

How To Teach Photography To The Blind

Teaching photography to a class of 20 blind students has taught Maria Iturbe to be a better photographer herself.

For most of the week, Mexican architectural photographer Maria Iturbe makes her living shooting building interiors and exteriors, as well as her fair share of executive portraits.

But about five years ago, a non-profit called Ojos Que Sienten, or Eyes That Feel, was looking for professors to lead a 12-session photography class for the blind and wanted to know if the young Iturbe could lend a hand.

Her response was skepticism. Teach the blind to shoot photographs?

“That’s crazy,” she remembers thinking. “I knew about photography, but what I didn’t know was how to teach blind people.”

Then, of course, she got on board.

Eyes That Feel

In 2013, Iturbe volunteered as a class assistant and eventually began leading the Mexico City course. It is offered two times each year to about 20 students.

Some have partial vision and no ability to distinguish colors or see things clearly. Others have lost their sight completely and doubt whether they can take photos at all.

Maria Iturbe.

“Many students are skeptical when they start,” Iturbe says. “They say: ‘Why should I take photos if I’m blind?'”

But the point of the class, says Iturbe, is to address these insecurities, and convince people that they can overcome their fears and do something completely visual. And in that sense, teaching a class of blind students isn’t so different from any amateur photography class.

“It’s a psychological process when you start,” Iturbe says. “You say to your students: ‘You’re going to do this activity which no one— including yourself— thinks you can do.'”

What her students eventually learn is that photography isn’t about what the world looks like. It’s like the images that many of her blind students still see when they dream.

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

At the beginning of the semester, Iturbe hands out cameras, which are loaned to students for the duration of the course. She then explains the fundamentals to her students, some of whom may never have used a camera before. She teaches her students to shoot by imagining their body as a tripod, centering the camera on their forehead or waist to find an axis on which to shoot.

Photo: Ojos Que Sienten

Shooting Without Sight

But how do her blind students find images to shoot? By relying on their other senses.

“When we go to the street we ask, ‘What do you smell? What do you hear?'” Iturbe says.

If it’s a portrait, students touch their subject. If it’s a landscape, they ask assistants in the class to describe a student’s surroundings before the photographer composes the shot.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

It’s a message she takes to hear in her own teaching lessons. She often needs to find metaphors for photographic concepts that make sense to people who may not ever have been able to see. To describe the concept of focusing, for example, Iturbe will use the metaphor of a radio dial, which you twist to ‘tune’ in a station. For depth-of-field, she’ll stand in a line with class assistants and ask them to determine who is standing first, second, and third by listening to their voices. Depth of field, she’ll teach, is choosing which voice to focus on.

The approach seems to work. Her students have taken some remarkable photos: a puddle which appears to probe and stretch the viewer’s senses of perception; a portrait of a monkey in a serious pose.

“They’re not perfect shots with every detail,” she says. “They’re shots that you can feel. And they take you to places you’re not used to.”

Photo: Ojos Que Sienten

The Teacher Becomes The Student

To that end, she notes,the classes have had an outsized impact on her own architectural photography, teaching her how to employ her non-visual senses when shooting. Her students have taught her not just to see the photo, “but live the photo.”

She has learned to think about photography without using her eyes.

Now, Iturbe commonly will blindfold herself and herself when she takes a portrait, using her sense of touch alone before taking a shot.

“The connection is different because it takes away just the visual part, and you can see that in the portraits,” she says.

We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

Another project inspired by her teaching involves X-raying purses, which results in images that can only be seen in their totality at the end of the shoot

“We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

That’s something that teaching Ojos Que Sienten has taught Iturbe. In an age of endless distraction, we may look, but we’re no longer seeing. Thanks to the lessons her students have taught her, Iturbe has become a better photographer.

“It’s changed me a lot,” she says. “I’m now more present, both in the shot and in life.”

Cancer The Good Fight

A Hopeful Lens

How this mom’s personal tragedy inspired a global photography project.

In December 2011, after Cynthia Dawson’s four-year-old daughter Ava started losing her balance, Ava was diagnosed with a terminal brain tumor called diffused intrinsic pontine glioma (DIPG). Ava’s only treatment options were experimental, so the family moved from Texas to Arizona so Ava could participate in a clinical trial.

A self-proclaimed hobbyist photographer, Dawson looked for a photographer in Phoenix who was willing do a pro bono photo shoot with Ava, documenting the girl’s kind spirit and love of pink for posterity. To her surprise and disappointment, Dawson came up empty.

Later, Ava’s tumor progressed and the family returned home to Texas, where Dawson knew a larger network of photographers. Ava had her photo shoot in 2012, one month before she died. At that point, Ava had already lost her ability to walk, so it came at a grave time for the family. “She didn’t understand what was happening to her body,” Dawson says.

Still, dressing up in a pink dress and a sparkly gold crown brought Ava joy. “At her session she was very happy and she was able to be herself and laugh and giggle,” Dawson says. “To have those memories of her being so joyful is something we always treasure. [Those photos] mean everything to us. It’s a physical reminder of her.”

Photo: The Gold Hope Project

The Gold Hope Project

Dawson called that photo shoot the first Gold Hope session. She saw a need for pro bono photography services to help other families dealing with pediatric cancer create memories and share their stories. “When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant,” Dawson says. “Being able to share their child’s journey is so therapeutic, to let the public know, ‘my child is not a statistic.’ I think a lot of the times people hear certain statistics and it’s easy to forget, it’s real people behind the numbers.”

When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant… My child is not a statistic.

To that end, Dawson co-founded the nonprofit organization Gold Hope Project, which achieved 501(c)3 nonprofit status in late 2014. The organization works with professional photographers all over the world (over 500 at last count) to photograph “fighters” (kids battling cancer), survivors, and their families. They also create remembrance photos for kids who’ve already passed. The organization then shares fighter stories on its blog to raise awareness about pediatric cancer. Dawson says proudly they completed their 500th fighter session this summer.

Photo: The Gold Hope Project

Destigmatizing Illness Through Photography

Erin Wilkos’s son Nate is one of those fighters. About a year after Nate was diagnosed with acute Lymphoblastic Leukemia, Wilkos saw a Facebook post about the Gold Hope Project and applied for a session. “We weren’t sure if Nate was going to make it or not,” Wilkos says. “He almost passed away a few times. We figured a professionally done photo, even if it was the last memory of him, would be something we could cherish.”

Fortunately, it wasn’t the last memory for this Connecticut family. “Nate is 15 and is doing absolutely fabulous,” Wilkos says. “He is nine years off chemo and just joined the football team and is a junior firefighter.”

Nate and family still do cherish the photo shoot experience. “The photographer met with him and myself and my husband,” Wilkos says. “Nate was really into the army and liked owls, so she set up the most amazing backdrop and had an army uniform for him. He loved it!”

GPH gives families the option to order an album of images from their session, so Wilkos did. But their album got mixed up with another family. “Our book went to someplace near Alaska and we got someone else’s book,” Wilkos says. “In communicating with her, I discovered she had a farm that had snowy owls. We exchanged books and she sent along a bunch of photos of snowy owls for Nate. We check in every once in awhile.”

Photo: The Gold Hope Project

A Life-Changing Photo Shoot

Of course, the Gold Hope sessions don’t just benefit the fighters and their families. Some of the photographers who volunteer their time and expertise also find the experience cathartic. Having two kids of friends get diagnosed with acute lymphoblastic leukemia and another friend’s kid diagnosed with a rare blood disease “hit me in a way that I couldn’t put into words,” says Brittany Blake, a photographer in Orange County, California. “I knew that I wanted to give back.”

In September 2017, Blake shot her first fighter session, which she describes as “life changing.” Her nine-year-old fighter was in remission from leukemia. “She was so strong but you could also tell cancer had broken her in so many ways,” she says. “I had a daughter who was a year older at the time. As a mother, it was heart-breaking to try to imagine everything this girl had been through.” Blake stays in touch with several of the families she’s photographed.

Photo: The Gold Hope Project

Dawson says these fighters and their families “have a really unique spirit usually and I think that definitely rubs off on the photographers who get to work with them one on one.”

As the Gold Hope Project grows, Dawson hopes to raise money to help fund critical research on pediatric cancers. “The stats are unfair when it comes to pediatric cancer specific research, a fact I learned after Ava got sick,” she says. “Her type of cancer had no new medical advancements in over 40 years due to lack of research. This year we will be able to join other organizations and fund research grants specific for DIPG and we are hopeful that one of these research studies will lead to better treatment options and one day a cure.”

For fighters stories or to find out how you can get involved, check out The Gold Hope Project’s website.

Disability Essays Vision & Hearing Loss

My Blade Runner Eyes

Photographer Nadya Lev was the toast of the fashion world, but it was only when she started going blind that she really learned how to shoot.

When I was 21, I shot my first magazine cover. It was for the 50th anniversary of Skin Two, a magazine of sex and fashion. The theme of the issue was “medical fetish.” At the time, the notion of having a chronic health issue was so foreign to me that it was easy to find exotic beauty in the trappings of sickness. My model wore a latex posture corset meant to evoke Victorian medical braces. Her arms were wrapped in long rubber gloves. Surgical scissors and Wartenberg wheels decorated her hair, which was coiled up in medical tubing.

That year, I became a well-known photographer within a few  niche subcultures. I shot nine more covers, for magazines with names like Elegy and Fiend. The models who had inspired me to begin taking photos flew to my city to work with me. I found myself on the lifetime guest list for every overseas party I grew up dreaming of one day attending. Over time, thanks in no small part to my gifted collaborators, my work entered the mainstream. Italian Vogue, MTV, VH1, Elle, Marie Claire, New York Magazine, and Harper’s Bazaar published my work in features on underground fashion.

Then, I had 15 eye surgeries. I went partially blind, and learned to navigate my world through a maze of hallucination-like visual distortions. And that’s when my photography truly reached the next level.

I had 15 eye surgeries. I went partially blind… And that’s when my photography truly reached the next level.

It all began with a LASIK surgery gone wrong. After a perfectly normal initial procedure, I had a complication called “corneal melt.” Just like people have a dominant hand, they also have a dominant eye. And my dominant eye’s cornea had gotten abnormally scarred as it healed from LASIK. The surface of the cornea took on the curvature of a funhouse mirror, and everything refracted though it began look askew. I now look back fondly on this (at the time devastating) period as an innocent time when most of my vision was still intact, because it was only a year later that shit got real. At 28, according to doctors at UCSD, I became the second-youngest person in medical literature to be diagnosed with genetically-inherited PXF glaucoma: a particularly aggressive type of eye disease that normally affects people over 65.

Glaucoma is a disease in which pressure builds up inside the eye, causing progressive and irreversible damage to the optic nerves. When the optic nerves become damaged, vision begins to decrease – first peripherally, then at the center. Glaucoma can’t be cured, but it can be controlled through medication and surgery. Many people don’t know that they have it until a large portion of their vision is lost, because the brain is creative at filling in the blanks when it encounters blind spots. By the time I realized I had a problem, I was almost completely blind in my dominant eye.

Everyone always wonders if the LASIK complication had anything to do with the glaucoma, and the answer from all my doctors was always “no”. I just happened to win two statistically improbable eye fail jackpots in a row. One in 112,500 people require disability leave from LASIK complications, and the number of people who spontaneously develop PXF glaucoma at my age per decade really is 1 in 7.5 billion.

I just happened to win two statistically improbable eye fail jackpots in a row.

What followed was a series of surgeries, surgery complications, and surgeries to fix complications. Most of these surgeries were different from one another, with esoteric names like trabeculectomy, intraocular lens implantation, and topography-guided PRK. Although each  surgery felt different, they all had one thing in common: a surreal alien abduction vibe. The surgeries would work for a little while, then fail after a few months. Meanwhile, the complications were accumulating. Following several failed glaucoma interventions, one doctor advised me to start shopping for a seeing-eye dog. Another suggested that I start learning Braille.

The situation reached a critical point while I was in Canada. I was right about to get a corneal surgery – state-of-the-art, but not yet FDA-approved – to fix the LASIK damage. Right before that surgery, my glaucoma spun out of control, more aggressively than ever before.

In most alternate-world timelines, I believe that this is when I went blind. But in this timeline, something lucky happened. I got introduced to a world-renowned ophthalmologist – Dr. Robert Weinreb, who is basically the Sherlock Holmes of ophthalmology. He has a medical degree from Harvard and an electrical engineering degree from MIT (both of which, I’m pretty sure, he earned simultaneously), he never sleeps, and every single ophthalmologist I’ve ever met knows his name. When he’s not busy conducting stem cell research to reverse blindness or running an entire eye institute, he somehow has time to operate on patients. And so it was that I appeared on his radar – via my scientist uncle, who’d done research with him at UCSD.

I flew straight from Montreal to San Diego for an emergency surgery on Christmas morning. The surgery worked for a couple of months… and then, like the others, it failed. It was a scary moment, but we we were not ready to give up. Dr. Weinreb did two more surgeries, taking a different approach than before. Unlike all previous attempts, these surgeries succeeded.

“Succeed” in this case means that the surgeries stopped the progression of the disease. I can’t currently get back the vision I’ve lost, but for the time being – no one knows how long, but it could be the rest of my life, or another year   – I don’t have to worry about losing additional eyesight. The glaucoma is under control.

When the dust settled, it was time to learn to live with a set of visual impairments that come from different parts of the eye being busted. My optic nerves, retinas, cornea, and lenses are all worse for the wear, and the different types of damage all result in different types of visual aberrations. Rather than considering it a loss, to me it’s a chance to find inspiration in a series of lush hallucinatory visions that make my world feel more mysterious, layered and dazzling than it was before.

It’s always snowing indoors now. The “snow” is actually visual noise, the result of damaged optic nerves…

For example, it’s always snowing indoors now. The “snow” is actually visual noise, the result of damaged optic nerves, kind of like a television tuned to a channel that the antenna can’t quite capture. I’ll be sitting across the table having a conversation with someone, and there’ll be a blizzard tearing the air apart everywhere around us. It’s as if all houses are inhabited by ghosts – not ghosts of people, but of strange weather phenomena, Fortean poltergeists that vary in intensity based on the color of the walls and the quality of light.

And when I look up at the sky, I see not one moon, but 8 or 9, with smudges and smears of light all around them. It makes me feel like I’m an explorer on another planet, looking up at the sky to see unfamiliar celestial bodies, making wishes on each one that I see. It’s better now that my cornea is mostly fixed, but there’s still a beautiful layer of light leaks, a feeling like all lights are wrapped in tinsel, a real-time lens whacking effect applied to everything I see.  

And of course, there was the most terrifying of glaucoma symptoms, the rainbows that appear when pressure is dangerously high around every light source, every street light, every lamp, every phone screen, blooming like flowers, savage colorful beacons transmitting the signal of “get help now, or you will lose all these colors forever.”

It took me a long time to find beauty in the visual distortions, and it took me even longer to find beauty in how the surgeries transformed my outward appearance. Every time I looked in the mirror, I saw all this evidence of every surgery that ever happened. I was always told that my eyes were my most beautiful feature, and now they reminded me of pain and loss. But after a time, I began to see beauty in that, too. My new artificial lens implants, , swapped in to fix the cataracts, reflect light differently, so that there’s always an extra sparkle inside my eyes. When I blink, you can catch them flickering like tiny cybernetic enhancements. “I can’t stop looking at your Blade Runner eyes,” someone told me once. I like being half-replicant.

“I can’t stop looking at your Blade Runner eyes,” someone told me once. I like being half-replicant.

It’s not always magical and amazing. After losing depth perception, all staircases forever look like slides. And I’ve lost the ability to read paper books, because even with reading glasses, the text is just too small. I’m a weird person to take to bookstores, because now, my way of experiencing books is open them, sniff deeply and inhale the pages. Whereas before it was just a vaguely-defined paper book smell, I can break it down into so many different components now: the musty paper, the scent of fresh ink, the leather cover, the glue used for binding. So, when the door of one sense closed, another opened.

For a long while after the surgeries, I was afraid to take new photos. I didn’t want to publish new work that was not on par with my old work, because I was afraid of how that would feel. My friends and family wouldn’t stand for it. A photographer friend gave me a lesson in lighting. My parents bought me a studio light and some modifiers when I was broke. My extended community surprised me first by chipping in for a new camera. Friends began to model for me with no expectations of results.

At first, my photos were terrible. I couldn’t even tell if they were in focus or not. Gradually, I began to work around my limitations. Or, more precisely: my limitations led to new breakthroughs.

A lack of control around my eyes’ function led to an obsessive, disciplined quest to master lighting. In studio photography, “shaping light” means bouncing, diffusing, tinting or directing light in specific and predictable ways using light modifiers. If I couldn’t make my retina or optic nerves transmit data as faithfully to my visual cortex as before, at least I could learn to carefully direct a strobe of light along a path, at just the right intensity, at just the right degrees, to illuminate something in an exact and perfect way.

I took care to compose carefully, rather than saying “I’ll crop it later.” I learned to achieve the desired shot in-camera as much as possible, rather than saying “I’ll fix it in post.” With the help of my incredibly talented retouching partner Marina Dean-Francis, I was able to explore new dimensions in color, mood and polish during the editing step.

I stopped relying on hair, makeup and wardrobe as heavily to carry the impact of the portrait, and focused more on the story of the person in front of me. I broadened my focus from portraying young women looking invincible to people from all walks of life, and all levels of vulnerability. I let the fragmented feeling of my visual impairment come through in my work, experimenting with glitch processes such as corrupting the image file to produce jagged, colorful artifacts throughout the image.

What I discovered is that seeing people… is less about how well I physically perceive them, and more about the ideas that our time together inspires.

What I discovered is that seeing people – truly seeing and celebrating them through my work – is less about how well I physically perceive them, and more about the images and ideas that our time together inspires. It doesn’t matter if I see in 240p rather than HD. This realization, combined with my newfound command of the tools, has helped me to create some of my strongest work to date. I know I’ll always have some tools for telling the stories that I want to tell, even if those tools change over time..

In his essay titled “Blindness,” my favorite author, Jorge Luis Borges, who did go blind from glaucoma, writes:

“For the task of an artist, blindness is not a total misfortune. It is an instrument… everything that happens, including humiliations, embarrassments, misfortunes, all has been given like clay, like material for one’s art. One must accept it … those things are given to us to transform, so that we may make from the miserable circumstances of our life things that are eternal, or aspire to be so.”

He ends his essay with a line from Geothe. Alles nahe werde fern, or: “everything near becomes distant.”Life is a gradual discovery of this fact, with higher and higher stakes as time goes on. I just happened to discover it more viscerally and literally than most people my age. The greatest gift my eye fail has given me is the ability to calmly survey whatever is in front of me and ask myself: “given that my vision is so potentially finite, is this worth looking at?” If so, look at it with all the love you can–this project, that face, this dream. If not, refocus your gaze on something else as gracefully as you can.

Try it for a week. Imagine that you have replicant eyes, with a replicant lifespan. What do you want to see the most? Bring more of it into your line of sight.

Top photo of Nadya Lev courtesy of Star St. Germain. 

Nadya Lev’s Instagram can be found here.

Mental Health Profiles

The Human Faces Of Mothers Coping With Addiction

In Branislav Jankik's photos, addiction is a disease that needs to be treated with love.

“Dear Mama, here I am writing you this letter, and it’s hard to find words,” wrote photographer Branislav Jankic, to his mother, Mila, in 2012. After struggling for years with pill and alcohol addiction, she had just been diagnosed with terminal lung cancer. “In the last 29 years we went through a lot together. Now the end is mixed with tears and laughter.”

Jankic's mother Mila, hugged by his brother.

Jankic’s mother Mila, hugged by his brother.

Jankic was born in 1983 in Vukovar, in the war-torn former Yugoslavia. Mila, a single mother, raised her two sons in the village of Borovo Selo, where she worked as a house cleaner and a nurse at a senior center. “She was a great mother,” Jankic says. “She played the role of a father for us, too. She gave us the freedom to speak up about anything.” But after she moved with her family to Munich, Germany to flee civil war, Mila herself didn’t feel free to speak up about her escalating addictions: To alcohol, sleeping pills, and, when back problems required several surgeries, prescription painkillers. As her habits spiraled out of control, “I approached the problem with anger,” Jankic says. “I was ashamed of her, and so was my brother.” Soon, he became estranged from his mother.

The brothers didn’t know how common their situation was: More than 10 percent of children in the United States live with a parent with an alcohol problem. According to a report by the Substance Abuse and Mental Health Services Administration, 90.6 percent of the 17.3 million Americans with alcohol dependence or abuse don’t receive treatment. Reluctance to seek help often stems from stigma and shame, which can be especially acute in women facing societal pressure to be “good” mothers.

When I learned of my mother’s cancer diagnosis, a world broke under my feet…

“When I learned of my mother’s cancer diagnosis, a world broke under my feet,” Jankic, now based in Brooklyn, says. “I started reading everything I could about addiction, about recovery. I had only a little time left. I wanted to show her how much I love her.” As Mila’s disease progressed, Jankic embarked on a project dedicated to eroding the stigma surrounding addiction, and to fostering communication and reconciliation between addicts and their children.

With his close friend and producer, Goran Macura, Jankic took a road trip across the United States, visiting rehabilitation centers and halfway houses in 11 cities, from Oakland, California to Hanover, Massachusetts. In 11 days, he photographed 40 mothers struggling with addiction, both alone and with their children. He invited the mothers to write letters to their children about their substance abuse. If the children were old enough, they wrote letters in response.


Photo: Branislav Jankic

These moving letters and black-and-white portraits are compiled in a new book, Letter to My Mother, published by Silvana Editoriale. They’re also the subject of a traveling exhibition, and a documentary about the project is in the works. “It was a monument I wanted to create for my mother,” Jankic says. “Looking back now, I have remorse for not having tried to understand or inform myself better. I didn’t see that behind my mother’s addiction, there was much more: she had unresolved trauma from her childhood, she had depression.” While the letters and photographs illustrate addiction’s devastating toll on families—many of the mothers pictured are working to regain custody of their children—they’re also a testament to the potential for reconciliation and recovery.

The 40 mothers who participated in the project hoped that doing so might help chip away at stigma. “Most of the women were very determined to tell their stories,” Jankic says. “For a lot of them, this was a chance to speak openly about their addiction, without shame, in hopes of lifting the stigma around the topic, to show addiction in a different light. For others, it was a chance to seek for forgiveness.”

Addiction doesn’t discriminate.

Ranging in age from teenagers to young grandmothers, the women pictured hail from every conceivable socioeconomic and cultural background. As Elizabeth, living in Santa Maria Hostel in Houston, Texas, put it, “Addiction doesn’t discriminate.” Wearing pearls in her portrait, Elizabeth describes being raised by an an addicted mother herself in what looked to outsiders like a “privileged, ‘Leave it to Beaver’” suburban childhood. Amanda, staying in the same hostel, was raised by gang members; she’d sought asylum after her ex-boyfriend tried to stab her to death. “What was common for all mothers was the love they all had for their children,” Jankic says.


Photo: Branislav Jankic

During his road trip, the photographer encountered widespread misunderstanding of what the Big Book calls a “cunning and baffling disease.” “Some of the women who were interested in being part of this project had to give up because of pressure from their husbands or their families,” Jankic says. “That was the most obvious example of stigma. Those closest to them were treating their addictions with shame.”


Photo: Branislav Jankic

These attitudes were painful echoes of Jankic’s response to his own mother’s substance abuse: a combination of shame, anger, and avoidance. In his early twenties, Jankic ran away to travel around Europe, working as a fashion model. Tensions escalated when Jankic developed his own drug problem; he didn’t know at the time that children of addicts are at considerably higher risk for addiction. Whenever he came home, he and Mila would get into “terrible fights”: She would “destroy everything in the house”; the neighbors would call the police; she would suffer from panic attacks; an ambulance would come to give her a sedative shot. Soon, Jankic fled the situation by moving to New York City to pursue photography, leaving his mother, and his own drug problem, in Europe.


Photo: Branislav Jankic

Back in Munich, Mila stayed under the watch of Jankic’s brother. Along with the testimonies of mothers in the book, her story illustrates some insidious patterns common to addicted parents’ relationships with their kids. “She would go out in the night, get drunk, and call him at 3 in the morning, or write suicide letters, or disappear for days,” Jankic says. She went in and out of rehab. “It always looked like she would be fine and make it, but then after a while, she would relapse,” Jankic says. “I was so angry about that, it hurt me so much, I don’t know why. It literally burned in my inner self.” It wasn’t until after Mila’s cancer diagnosis that Jankic learned about the biological underpinnings of addiction and the staggeringly high rates of relapse.

In my life there was good, bad, and catastrophic—but the best was with you.

Just months before she died in 2014, Jankic photographed Mila, naked and frail, with a gold cross around her neck. The portrait is printed alongside her letter to her sons: “Forgive me for drinking,” she wrote. “I’m a frustrated alcoholic… In my life there was good, bad, and catastrophic—but the best was with you.”

Jankic wrote back: “Until now I didn’t understand that our hearts are the same and that words can stab like knives. I am very sorry that I hurt you a thousand times and that I left you alone when it was the most difficult for you.”

Chronic Illness Profiles

The Girl With The Beautiful Photographs

“I've learned that if you really want to find peace in life, you have to learn how to embrace [your obstacle] as a stepping stone,” says 14-year-old photographer Emma Ketterer.

A park bench sits near a still pond, orange fall leaves from a tree overhead. The image is still, serene, and beautifully composed. You’d be forgiven for thinking this was the work of an adult photographer with years of experience and schooling, but you’d also be wrong.

14-year-old Emma Ketterer takes beautiful photographs with no formal training. A native of Berks County, Pennsylvania, she also has Lyme disease: a difficult-to-diagnose bacterial infection that can cause extreme fatigue, insomnia, and cognitive impairment.

Emma uses her photography to transcend her condition.

“The photography is a big therapy in a lot of ways,” says her mom, SuEllen Ketterer, “getting her body moving, getting outside, and having something positive to do.”

Emma has always been interested in photography, but she considers the starting point of her photographic ‘career’ the day her uncle gave her his old Canon 20D camera for her twelfth birthday.

“I had no clue how to use it, and didn’t even discover shutter speed until that summer,” she says. “You can imagine how much different my first photographs look compared to what I do now.”

The gift changed her life. Just six months previously, the symptoms of Lyme disease had hit her all at once. Most days, it was hard enough just to get out of bed.

“You have to understand that before I became sick I was a very active person,” Emma says. “I had been a horseback rider for seven years, I played the flute in the school band, I took part in choir and many other extracurriculars.”

When she was suddenly unable to do those things, it became hard for her to get excited about life. Photography gave Emma a new challenge that fit within her limitations.

“I was able to push myself without causing stress,” she says, “and the result of that was a physical image that I could look at as a reminder that I was trying my hardest.”

Two years ago, Emma’s grandmother put the photos up for sale at her farmer’s market booth and sold out the first day before noon. Now, Emma is featured at a local art gallery, sells photos through local flower shops, and places her photos at nearby craft shows, in addition to her grandmother’s booth.

“When I first started, I was taking photos because that’s all I could do, and it gave me a purpose,” Emma says. “Skip ahead two years later, and I’m being recognized around my town as the girl with the beautiful photographs!”

Emma is still figuring out what type of photography she likes best. She tends to take a lot of animal photos and landscapes, but would love to try more street photography. It’s important to her that none of her subjects are posed or set up like a postcard. Her goal is to share the truly wonderful moments in her life.

“To me, photography is all about capturing the raw moments of life and using that to spread a message or unite people,” she says.”


While her health has improved immensely in the past two years, even simple tasks like getting up to go to school can be tough for Emma. Her photos represent the most precious moments in her life, and remind her that happiness can truly be found in the darkest of times, as she continues to overcome any obstacles in her way.

“I’ve learned that if you really want to find peace in life, you have to learn how to use that obstacle to your advantage and embrace it as a stepping stone,” she says. “You have to take it as an opportunity to better yourself and those around you.”

This inspiring young woman has found her own way to help herself and hopefully help others around her. Taking her photos and selling them has allowed Emma to spread her own hope and joy with others, inspiring them to make the most of what they’re given.

“If I can help just one person to find that happiness in their darkness,” she says, “then I’ll have done my job as a person.”

You can follow Emma’s photography on Facebook here.