Neurological & Cognitive Disorders Profiles

The Art Of Coping With Brain Injury

Dutch artist Tom Heerschop aspired to be the greatest artist since Leonardo Da Vinci. Then he developed a brain tumor the size of a sweet potato.

In 2008, Amsterdam-based artist Tom Heerschop was in his kitchen on his son’s sixth birthday, about to cut the cake, when he felt a violent pressure in his head. “My head felt like a train was arriving, and I had to catch that train,” Heerschop says. “I ran downstairs. I heard strange sounds and smelled strange smells. I thought I’d gone completely crazy.” Outside, he had a seizure, his first. It lasted for 45 minutes.

After waking up in the hospital, Heerschop asked for an MRI scan. Doctors in the Netherlands don’t automatically administer MRIs to patients suffering from seizures, but Heerschop insisted. One month later, a scan revealed a benign tumor, the size of a sweet potato, in Heerschop’s brain.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says. Finally, “everything made sense.” For ten years, he had been afflicted with severe depressions, violent outbursts, migraines, and personality changes. He illustrated these afflictions in his daily “Depression Diary.” In self-portraits from the diary, the artist’s brains explode out of his head, his face is pocked with greenish boils, his eyes are black caverns. Though he tried everything from psychoanalysis to singing bowl therapy, none of his symptoms responded to treatments. When the tumor was discovered, Heerschop realized, for the first time, that his psychological condition had a physical cause.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says.

Growing up in Bussum, a town 20 minutes from Amsterdam, Heerschop loved to draw. “As a kid, I was in my most natural habitat when drawing,” he says. “It made me quiet and happy. Everywhere we went, I had my little notebook.” He attended a Waldorf School, known for its encouragement of children’s creativity. At 16, he started taking weekend painting courses, and by 18, had his own atelier. At the Rietveld Academie Amsterdam, a prestigious fine arts university, he studied photography, drawing, design, and painting, and graduated in 1996. Shortly after, he got married. He felt like he was at the top of his game, “in control, at ease,” and that showed up in his artwork: Crisp pencil drawings of barns, trees, and silos; quietly surreal ballpoint illustrations of bakers baking bread.

But when he was 25, getting his master’s in art at the Sandberg Institute, Heerschop felt his psyche shifting. He began to experience depressions of a depth he’d never felt before. Crushing headaches led a doctor to prescribe him painkillers. And though he’d “always been gentle,” he started to hit his wife. At one point, he broke her shoulder bone. “I knew something was going on, but I didn’t know what it was,” Heerschop says.

One of Tom Heerschop's larger murals, completed before his diagnosis.

One of Tom Heerschop’s larger murals, completed before his diagnosis.

At his wife’s urging, he tried various forms of therapy: Psychoanalysis, rebirthing sessions, hypnotherapy, acupuncture, tai chi, relationship counseling. “Therapists tried to figure out what was wrong with me—they asked about my parents, my childhood, work-related stress, stress with my former girlfriend,” Heerschop says. “It never stopped, and none of it helped at all. That went on for ten years.” Over those years, Heerschop and his wife had three sons. At first, he was a gentle father, but soon became temperamental and violent.

Drawing was one of his few non-destructive outlets, and he was wildly productive in the studio. He made more than 100 works a year and appeared in solo and group exhibitions in the Netherlands and Italy. “A drawing a day keeps the doctor away,” he wrote of his “Depression Diary,” begun in 2000. Some work from this diary is psychedelic, lighthearted, in fauvist colors: A fuzzy stuffed penguin and a ginger cat are recurring characters. But much of it is tortured: A man in a crown slices his own head off with a kitchen knife, his black ink guts spewing; webs of paint smother the faces of sickly men with purple eye bags; an Easter rabbit with a basket of eggs gropes a nude woman; a horned demon sits in a wheelchair; a pink body curls on a cot in a jail cell. Compared to the quiet, controlled drawings from Heerschop’s college years, these works suggest psychic chaos.

“Not once did anyone come up with the idea that maybe all my problems had something to do with something inside my body, instead of my personality,” Heerschop says in a 2013 TEDx talk.

By the time the tumor was discovered in 2008, it had been growing in his brain for at least ten years. It was a millimeter away from his ear and a millimeter away from his eye. If it had gotten any bigger, he would have gone blind and deaf. “At first, I thought I was going to die, but doctors assured me I would survive,” Heerschop says.

The operation that removed the tumor left a scar shaped like a backwards question mark curving from his hairline down to his ear. Though recovery from the surgery was tedious, “I felt born again, for a while,” Heerschop says. “It felt like a new start.”

But there was no happily-ever-after to follow. Even after the tumor was removed, Heerschop still struggled with erratic behavior and strange symptoms: Headaches, memory loss, fatigue, irritability, aggression. Sounds overwhelmed him. And, when he returned to the studio to draw, he felt slow and stuck. “In the past, when I made drawings, it was like opening a never-ending stream,” he says. “Now, this stream had dried up.” After Heerschop waited eight months for an appointment at a neuro-rehab center in Amsterdam, a neurologist diagnosed him with Acquired Brain Injury (ABI) in ten minutes. The tumor had done considerable damage to his frontal lobe.

Tom Heerschop as seen on his official website.

Tom Heerschop as seen on his official website.

An intensive neurorehabilitation program educated Heerschop about ABI and taught him coping mechanisms, like mindfulness and body scan exercises, which he now does for 35 minutes a day. “It leaves me feeling completely reloaded,” he says. “I’m trying to draw with more mindfulness.” But the damage is irreversible, and challenges persist. About every three months, he has a seizure. After working for 45 minutes, he’ll have to rest or take a nap. “Thinking is tiring. If a child is talking while the TV is on, those sounds together are too much for me.” But for the first time in his life, he knows the cause of these symptoms, and has a support system that helps him manage them.

After the surgery, Heerschop and his wife split up. Two and a half years ago, he reconnected, via Facebook, with Bregje deVries, a former girlfriend, whom he’d fallen in love with while “young and kind of restless.” Now, “less restless,” he lives with DeVries, an educational scientist, who acts as his agent and helps him manage his medications and schedule.

In a way, this disease helps me to be much more reflective in everything I do.

“In a way, this disease helps me to be much more reflective in everything I do,” Heerschop says. “So many people just go into work and work too hard to earn money and come home and don’t think about it. I really have to think about the worth of everything I do.”

Heerschop’s life story is front and center on his interactive personal website, designed earlier this year by Utrecht-based Studio Airport. In a black-and-white video loop, the artist stares out from the homepage, blinking, occasionally laughing or scratching his nose. When you click on his head, animated fragments of his drawings pop up: A purple lizard-creature flicks its tongue; a bug-eyed bluebird peeks into the corner; a bonfire sprouts from Heerschop’s forehead. “There was only one way to make this site: Putting Tom’s photograph as the front door you have to go through to get to the work, entering his head and following all the series of works that sprang from it through the years,” deVries says. Nearly 1,200 of Heerschop’s artworks are displayed in chronological series from 1996 to 2015. Together, the series of drawings tell the story of his illness from the inside out: You see the evolution from crisp, controlled monochromatic still lifes, to scrawled stream-of-consciousness works in riotous color, to drawings about the tumult and excitement of early parenthood, to the depression diary, to hallucinatory works made while recovering from surgery, featuring cross-sections of brains and slinkies popping out of skulls.

One of Heerschop's later drawings, made as he recovered from brain surgery in 2012.

One of Heerschop’s later drawings, made as he recovered from brain surgery in 2012.

Before his operation, Heerschop averaged one drawing every two days; now, he’s lucky if he finishes one in three weeks. Instead of aiming to match the machine-like output of his earlier years, he’s changed his approach, experimenting with large-scale, ongoing works. “I let go of the idea that you can finish a drawing. It’s much more difficult for me to make one single image—that blocks me, in a way,” he says. “I’m now trying to find a way to make endless drawings.” His most recent work, a nearly 30-foot long panorama in black marker on white paper, took four months to complete. Featuring serpents and phalluses emerging from flames, bodies with giant eyeballs for heads, missiles with legs, and fractal-like arrangements of pencils, it was an abstract response to the terrorist attack at Charlie Hebdo in January 2015.

“I’m not yet in a place where I’m making my best work after my operation,” Heerschop says. “He’s always doubting his work,” deVries says. “But I’m his biggest fan.” Despite the perilous setbacks, he doesn’t plan on retiring any time soon. “Drawing is more than a job— it’s my love, it’s my blood,” Heerschop says. “I’m gonna draw forever.”

Disability Profiles Vision & Hearing Loss

Pinky Fang, The Artist With Different Eyes

Being blind means more than one thing, and It doesn't always mean you can't see.

Megan Ultimate, who works under the alter ego Pinky Fang, is a twenty-nine year old visual artist from Wellington, New Zealand. She is also blind.

Pinky has a condition called Retinitis Pigmentosa, which is slowly stealing her vision and literally changing the way she looks at life.

Writer Sarah Wilson spoke with Pinky about the role blindness plays in her life and work.

Pinky Fang always knew that she was going to be blind. For her, Retinitis Pigmentosa is genetic. Her father has it, as does her uncle, and her grandmother. Pinky was five when she started exhibiting symptoms of the disease.

“There’re actually several hundred different strains of RP,” she tells me. We’re sitting together behind the counter in the record store where Pinky works on the weekends. She’s passionate about music, has been a DJ for bars and charity events, and has an enviable collection at home.

“If you don’t inherit RP, it can happen to you pretty fast,” she continues. “But for me, it’s been a slow decline my whole life. I guess it’s a genetic lottery what type of eyes you get.”

Pinky Fang, whose real name is Megan Ultimate.

Pinky Fang, whose real name is Megan Ultimate.

Although she retains some vision, Pinky is legally blind, and is a member of New Zealand’s Blind Foundation. To be classed legally blind, a person’s field of vision must be less than twenty degrees in diameter. A fully sighted person has 180 degrees.

“When I found that out, I thought, ‘Oh well, I have way more than that.’ I went to an ophthalmologist to get tested, and it turned out I only had six degrees. So that was a big shock. It really hit me then.”

Pinky describes what she sees as “like looking through a cardboard tube.”

“There’s nothing around the outside, I don’t have any peripheral vision. I also have a separate astigmatism that makes the middle bit blurry, but as long as I wear my glasses, that circle in the middle is fine.”

Pinky’s symptoms became more obvious when she was about fifteen.

“The first thing I noticed is I couldn’t see at all at night. Your retina just doesn’t adjust, so I couldn’t see a thing as soon as it got dark. And even during the day, I started bumping into things and falling over.”

Pinky’s always been an artist, and knew early on that art was what she wanted to do with her life.

“I studied some other stuff for a while, but art is part of me. People get confused by how I can be blind and do art. They don’t understand that the word ‘blind,’ doesn’t necessarily mean no vision at all. And even if I was totally blind, I’d still find a way.”

Four years ago, the stress and anxiety associated with not being able to see properly made Pinky realize she needed to reach out for help.

“I started waking up, and another patch of vision would have gone overnight. It was scary.”

It was at that point that she joined the Blind Foundation.

“That was a real change. I’d never used the word “blind” to describe myself before. But they taught me how to use a cane, and introduced me to support services like counseling.”

Pinky was part of the Foundation for three years before she went on the waiting list for a Guide Dog.

It was during her time with her first dog, Penny, that Pinky became an advocate for people learning more about blindness and Guide Dogs.

“I wanted to spread the message that ‘blind doesn’t necessarily mean ‘no vision at all,’ because that lack of understanding can actually make it harder for blind people. It’s difficult when you sit in the grey area.”

She worries about people thinking she’s a fraud, because she can see some things some times, and not others, an inconsistency which is normal for blind people, but one that’s easily misunderstood.

Last year, a bus driver accused Pinky of faking her blindness.

“It was so public, and so humiliating. It got on the news and everything. I tried to use my Blind Foundation card to get my fare on the bus, and the driver laughed at me and said that I wasn’t blind. It was awful. I was so upset, I’m still upset now.”

She’s also an advocate for teaching people how to interact with Guide Dogs.


An illustration of Pinky's dog,

An illustration of Pinky’s dog, Penny.

“Other people are not supposed to touch them or even talk to them while they’re working, because it can be really dangerous if they get distracted. But it happens all the time, and it’s really frustrating. It’s not like it’s not obvious; she’s wearing a Guide Dog coat, I’m holding her harness.”

Guide Dogs have at least two years of training before they are matched with a person. Then, a trainer from the Foundation works with the dog and its owner to ensure they can work together.

“My first dog, Penny – we had a rough time. I didn’t really know what I was doing; it was all new to me. People assume that Guide Dogs just know exactly what they’re doing, like they instinctively know where you need to go, and of course they don’t. There is a lot of training involved.”

“They still need you to direct them. If you don’t, they’ll just lead you to the park every time,” Pinky laughs.

Not all dogs are suited to the work, despite the training. Penny was eventually retired to be a pet.

“I was so sad about Penny,” says Pinky. “It was really hard to say goodbye, because I had spent months bonding with her. But it’s not fair to her, if she doesn’t want to work, and it was dangerous for both of us. I have to rely on the dog to keep me safe, and she couldn’t do that.”

After a six-month break, Pinky has just been matched with a new dog, Lyric, who is currently sitting calmly at our feet. Lyric will live with Pinky, stay with her at the record store, and accompany her every day to the art studio she shares with several other women.

Pinky says being blind doesn’t define her work as an artist.

“I kind of prefer that people don’t know I’m blind when they look at my work. I don’t want to be thought of as “that blind artist.” I want my art to be held to the same standard as everyone else’s.

“I don’t want to people to say ‘Oh, that’s really good for a blind person.’ I don’t mind if they know that second, but I don’t want it to be the first thing they think about.”

The Pinky Fang name, along with the Kitty Gang brand she has created, are known up and down the country.

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

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

The studio wall next to her desk features a large-scale mural of multi-colored cats, which are a favorite subject.

“I’ve always been a cat lover,” she laughs. “There’re quite a few people now who have personalized Kitty Gang tattoos, which is amazing – it’s the hugest honor to have people literally wear your work on their skin.”

Being blind influences, but doesn't define Pinky's art.

Being blind influences, but doesn’t define Pinky’s art.

“Do you think that being blind informs your work at all?” I ask. She nods.

“Well, sure. I mean, it’s not a subject I’ve explored much in itself, but it definitely affects the size and mediums I choose to work in. I prefer to do smaller scale stuff as it fits in my line of vision. Although, one of my favorite things to do is larger scale spray paint work. It’s hard with my eyesight, but I just take my time and do it piece by piece.”

Pinky aims to produce at least one new piece every week. She has held several solo exhibitions, and is planning another one for later this year.

I lean back in the chair and look at the dog curled peacefully at our feet. I wonder out loud what Pinky’s plans are for the future. She’s silent for a bit.

“That’s a really hard question,” she says. “I don’t want to fight against what’s happening. There’s no way of knowing when my vision will go completely, it’s different for everyone. So I just want to go with it. And I just hope that whatever I end up doing, it’s creative.”

Mental Health Profiles

The Textile Artist Who Weaves Tapestries With Trichotillomania

Through repetitive, mindful weaving, Erin M. Riley keeps her impulse to pluck her hair out under control.

At age 13, Erin M. Riley started plucking her hair as a way to relieve stress caused by her family’s substance abuse problems. Throughout her childhood on Cape Cod, her dad used drugs and her mom drank. When she reached college, her urge to pluck, known as trichotillomania, became debilitating. At that point, her older sister and her younger sister were both addicted to heroin.

“During college, I was waiting for the call that they were dead,” says Riley. “Anytime my mom called, I wouldn’t answer. I wouldn’t listen to voicemails.” Her sisters’ addictions consumed the entire family. “But I never felt allowed to be upset. Because I wasn’t the addict; I wasn’t homeless. I was in college, you know?”

One of Erin's works in progress.

One of Erin’s works in progress.

Classified as a body-focused repetitive behavior under “obsessive-compulsive related disorders” in the DSM5, trichotillomania (also TTM or trich), affects as many as four percent of the population. Often those with the disorder feel compelled to pull out hair from their eyebrows and head, leaving behind patchy bald spots. This in turn can create an isolating spiral where people avoid social situations and intimacy out of embarrassment or fear that their TTM might be discovered.

Riley kept her disorder hidden by plucking the hair around her nipples, her pubic hair, and her leg hair. “I was always very aware of not letting anyone see,” she says. Alone with her anxiety, she would sit on the side of her bed with a spotlight and pluck for two to three hours straight, sometimes longer, take a break, and then return to plucking. The pain was euphoric, but she was left feeling exhausted the next day. Her hands hurt. Her attendance suffered. “I couldn’t wake up because I would do it all night,” says Riley.

In the midst of her family’s crisis and the peak of her plucking, she stumbled upon her artistic calling — and a productive way to work through her anxiety. Curious about tapestries, she enrolled in a weaving class as a freshman at the Massachusetts College of Art and Design. Riley, who had never seen a loom before, was immediately hooked. Inside the beautiful old room, eighteen wooden looms sat on a hardwood floor. Light spilled in from tall windows, and hefty spools of color-coordinated yarn filled the shelves of one wall. She loved the feel of the yarn in her fingers and the music of the looms. “When the full class was weaving, it sounded like an odd orchestra,” she says.


Erin with her yarn. Photo: Alex McTigue

Learning to weave was frustrating at first, but the difficulty made her focus, and she found that the process had the bonus effect of calming her trichotillomania. “It’s repetitive, it’s controlled, it’s mindful, but also automatic,” explains Riley. “You are in this trance-like state, which is similar to trichotillomania, where you kind of lose your head a little bit. You get foggy.”

Sharing her secret also helped. Riley told her then boyfriend what she was doing and asked him to take her tweezers. “It’s like this thing that feels so gross and weird and you think everybody knows … but no one really knows anything about what’s going on,” she says. “I don’t think he understood, but it was good to say something out loud about it.” No longer a private shame, her trichotillomania held less power, and Riley began to gain control over it.

These days, the 30-year-old artist’s hands are very busy. If there is such a thing as a rising tapestry star, Riley is it. She’s brought new immediacy to an antiquated and terribly time-consuming medium by tackling people’s hidden desires — from the erotic impulses behind semi-nude selfies to the more destructive yearnings imbedded in drug addiction. These provocative and straight-up beautiful textiles have garnered write-ups in Vogue, W Magazine, the Wall Street Journal, and an envious number of other publications.

Riley captures her own trichotillomania condition in many of her works.

Riley captures her own trichotillomania condition in many of her works.

Watching her weave, which anyone can do thanks to her online videos, is mesmerizing. With her long black hair, blunt bangs, and big eyes, she resembles an active Emily the Strange. Her black clothing offsets the colorful tattoos that swirl around her moving arms — a red devil decorates her left forearm, the word serenity in cursive script wraps around her right, a tapestry beater and other tools of the trade pop out of a skull covering her right bicep. She is a doll-faced badass weaver. She dives and glides the shuttle below the taunt warp threads or pulls the weft yarn through by hand, her fingers plucking at the warp. Thread by thread, row by row, she builds each tapestry from the bottom up, finishing about an inch an hour.

Riley spends twelve to fourteen hours a day on her larger pieces, some as big as 8’ x 8’, in the live-work basement apartment that she shares with her artist boyfriend Eric Patton (they weave rugs together under the brand To Dødsfall) in Brooklyn, New York. She has a hard time breaking in the middle of a piece, so she sometimes works for 27 days in a row. To keep from getting too in her head while she weaves, she listens to podcasts like “Sex, Death and Money” or “This American Life,” and watches war and addiction documentaries. “I find myself crying at the loom a lot, but it’s fun,” she says. “I mean, I watch crappy TV, like Grey’s Anatomy and The Bachelorette, too.”

Still, she admits there are days when she doesn’t want to sit down at the loom. “Every day, I tell myself, ‘This is too hard. This is impossible,’ and then I figure it out,” says Riley. “For me, weaving is a lot of wins. I force myself to do something, and it’s always worth it.” Because she creates such large tapestries, the process becomes sort of a sweet metaphor for life. “There are fun parts that can distract you from the hard parts, and then, once you can’t be distracted any longer, you can go back to the hard parts.”

Although she’s gained notoriety for intimate self-portraits that show her in various stages of undress, Riley hadn’t addressed her disorder in her work until now. Her most recent show, “18/bi/f/ma,” at Brilliant Champions in Brooklyn, includes a tapestry of neatly aligned pink and metal tweezers, a portrait of her plucking called “The Beginning,” and a piece titled “Narcan in Hell,” which shows the syringe used to treat a narcotic overdose, a reference to her siblings’ heroin addiction. But no matter how hard the subject, there’s an inherent softness in Riley’s work. Edges warble and nubby wool renderings of razors and bloody leg gashes beg to be touched. Through tapestry, Riley performs exorcisms on her traumatic memories, turning them into forgiving fabrics.

“For many years, I focused on the sexy — these idealized versions of ourselves that we send to suitors,” says Riley. “Transitioning to this is pretty overwhelming and scary.” Riley braved her fears because she wanted to show the other sides of nudity that are kept hidden or ignored. “It’s good to normalize flaws and differing behaviors.”

Erin in her studio. Photo: April Kilcrease

Erin in her studio. Photo: Erin M. Riley

Based on the responses she’s received on Instagram, her new work is resonating with others. Under a post of “The Beginning,” people responded with “Damn, this is so real,” “I thought I was the only one,” and “Makes me feel better and less weird.” After she posted “Tweezers 2” with the hashtag #trichotillomania, followers commented: “A main reason I weave is to keep my hands busy so they can’t pull,” “… I wish I could show you my third grade school year photo. I have three eyebrows and no eyelashes,” “I adore this. Your work is so honest and empowering. I’m a textile gal who also struggles with trich — I think it pushed me towards working with my hands, which I’m grateful for.”

This sharing has been mutually beneficial for the artist and her audience. “I didn’t know there were so many in the weaving community,” says Riley. “That was amazing for me to find out.”

One of the most memorable private messages she received came from a high school junior who wrote that trichotillomania was taking ahold of her life and she didn’t know how to talk to anybody about it. The teen was surprised to see people openly discussing the disorder. “For a fifteen year old in the midst of this insanity to learn that other people have gone through it and are fine, I think that alone was helpful,” says Riley. The message prompted her to talk to her own mom and “let her know that there’s more of us,” she says. “It felt like I had been keeping a secret, because it’s really hard to explain.”
Riley plans to continue in this vein, “digging up memories that were either painful or traumatic” and weaving them into tactile pieces of art. She still plucks occasionally when she’s worried or stressed, but the urge doesn’t have the power that it once did. “I will stop and then pluck for a little bit and then I’ll go back to work. Sometimes it’s too distracting, so I’ll take a shower and go for a walk,” says Riley. “There were times in my life when I really felt trapped and I couldn’t talk to anybody about it, and that’s not how it is now.”