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The Art of illness: Four artists talk about how their neurologic conditions affect their art.

Collier Cool, Lisa

doi: 10.1097/01.NNN.0000522202.52118.4d
Features: Artists with Neurologic Disorders

Vincent Van Gogh ranks as one of the most brilliant—and prolific—artists of all time, painting hundreds of master-pieces ablaze with vivid colors, bold brushstrokes, and swirling coronas. He also experienced seizures, hallucinations, and other symptoms throughout his short life that many historians, his own doctors, and Van Gogh himself attributed to a neurologic disease: epilepsy.

Other famous artists, including Willem de Kooning, who developed Alzheimer's disease, created masterful works of enduring genius while living with neurologic conditions. More recently, Chuck Close, an American painter and photographer, has talked about how his various neurologic conditions both enhance and limit his artistic output (http://bit.ly/NN-ChuckClose).

We reached out to four contemporary artists to find out how their respective conditions—epilepsy, Charcot-Marie-Tooth disease, dyslexia, and multiple sclerosis (MS)—influence their art. Some say their condition has made it more challenging to practice their craft, but all report that it has affected their artistic abilities in surprising, positive, and even beautiful ways.

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PAULA HAYES

ART: SCULPTURE, LANDSCAPE DESIGN

CONDITION: TEMPORAL LOBE EPILEPSY

SILVER LINING: MAGICAL PERCEPTIONS

Botanical artworks from Paula Hayes have been exhibited in leading venues around the world, including the Museum of Modern Art in New York City and the Gagosian Gallery in Beverly Hills, CA. Best known for blown-glass terrariums in organic shapes (such as eggs, peanuts, globes, and slugs) with tiny tropical gardens inside, she has been hailed by an art critic in New York magazine as “a sculptor of the first magnitude.” A reviewer writing in the New York Times commented on her “keen eye for the passionate moment when art…pushes through with all its might and begins to bud.”

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ROOTS OF ARTISTIC VISION

Based in New York City and Athens, NY, Hayes, 58, says her unique artistic vision stems from two neurologic disorders: temporal lobe epilepsy and Alice in Wonderland syndrome. “When I was very young, every night just before falling asleep I'd feel as if my body got as big as my bedroom. I'd get a very intense, electrical sensation. When I dreamed, everything often looked very tiny but incredibly detailed, like the little worlds inside a bubble that I create,” she explains.

Hayes' experience is typical of Alice in Wonderland syndrome, a perceptual disorder named after Lewis Carroll's 1865 novel, Alice's Adventures in Wonderland, reports Chad Carlson, MD, co-director of the Comprehensive Epilepsy Program at the Medical College of Wisconsin in Milwaukee. “Like Alice in the story, people with this syndrome often feel as if they are getting larger or smaller relative to their surroundings or that objects in their environment are expanding or shrinking. This phenomenon, which is described in the medical literature, can be associated with seizures, such as those triggered by temporal lobe epilepsy.”

The syndrome, which affects an estimated 10 to 20 percent of Americans, mostly occurs in children. A review of studies about the syndrome published in BioMed Research International in 2016 links it to migraine with aura (visual symptoms, such as seeing flashing lights, zigzag lines, or blind spots shortly before a migraine strikes), as well as epilepsy, viral infections, and head injuries. Carroll's own experience with migraines is thought to have inspired his vivid descriptions of Alice's changes in body size after falling down a rabbit hole.

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PLAYING WITH SIZE

Although Hayes' condition disappeared on its own—it's often temporary and doesn't require treatment—it remains a powerful, ongoing influence on her work. She loves to play with size, creating everything from tiny, wearable terrariums she calls “living necklaces” to intricate, large-scale, outdoor gardens dotted with whimsical sculptures for celebrity clients.

“It's a way of sculpting the landscape to create an ecstatic experience for people,” says Hayes, who began her career as a gardener for Woody Allen, Mia Farrow, Miles Davis, and other prominent New Yorkers while studying for her Master of Fine Arts degree at Parsons School of Design in the late 1980s. A few years later, she branched into creating the botanical artworks for which she's now renowned. She is credited with single-handedly reviving the popularity of terrariums with flowing, futuristic designs that have been imitated by some well-known retailers.

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A SECRET REVEALED

Until she was in her late 40s, Hayes didn't tell anyone about her neurologic symptoms. “I never fell down or lost consciousness,” she says. “Throughout my life, I'd get the same electrical feeling I did with Alice in Wonderland syndrome, then I'd be gripped with an eerie feeling of déjà vu. A very intense, overpowering sensation would rise in my chest, and I'd taste salt or aspirin at the back of my throat as the sensation reached a crescendo. Afterwards, I would feel very emotional. Although this sometimes happened when I was talking to someone, no one could tell anything unusual had occurred.”

As she approached menopause, these episodes became more frequent, prompting Hayes to break her silence. “First, I told my daughter, who was concerned. Then I Googled déjà vu and found out I had all the symptoms of seizures. I went to a neurologist who tried to trigger one with flashing lights, but it didn't work.” Nor did medical tests reveal anything. Then one day when Hayes was having what felt like a cluster of seizures, she jumped into a cab and raced to the hospital. “The neurologist hooked me up to an EEG [electroencephalogram] machine and saw a classic partial complex seizure of the left temporal lobe,” an area of the brain involved with speech, reading, and other language skills.

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HORMONAL INFLUENCE

Epilepsy affects about 3 million Americans, 60 percent of whom have temporal lobe epilepsy, according to the Epilepsy Foundation. “In women, hormones can have a very strong influence on seizure frequency, which often increases during menopause, though some women don't notice any change in frequency or even have fewer seizures at this stage of their lives,” says Dr. Carlson. “Younger women may also notice a hormone-related pattern, with an increase in risk for seizures during ovulation and before menstruation.”

Temporal lobe epilepsy can be tricky to diagnose, adds Dr. Carlson. “The symptoms—such as hallucinations; unusual physical sensations, smells, or tastes; déjà-vu experiences; and temporary difficulty in speaking—can sometimes be confused with migraines, panic attacks, or transient ischemic attacks [also known as mini-strokes, a disorder that occurs when a clot temporarily blocks blood flow to an area of the brain]. The gold standard test is an EEG—and the best way to use it is when the person is having a seizure.”

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CHANGING PERCEPTIONS

Hayes' neurologist prescribed zonisamide (Zonegran), an antiseizure drug. “Along with being very effective at preventing seizures, the medication has also made a big difference in my perceptions,” she reports. “I still have the magical, altered awareness that I experience through déjà vu, but I also feel more connected to the real world. In some ways, my work is more analytical and precise now, which is great when I'm working on big, complex art installations.”

Her recent living wall at the Seagram Building in New York City is a case in point. Titled Canoes, the art installation took a year to design and construct, and features plants cascading over a series of canoe-like forms dangling in space. “My installation takes an aspect of nature that feels very intense and overwhelming—similar to having a seizure—and sculpts it into an alternative world, like the one I experienced through Alice in Wonderland syndrome, as one of the fascinating gifts of this disorder,” says Hayes.

For more about Paula Hayes and her work, go to http://PaulaHayes.com.

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JOHN McNEIL

ART: JAZZ TRUMPETER

CONDITION: CHARCOT-MARIE-TOOTH DISEASE

SILVER LINING: IMPROVED IMPROVISATION

A trumpet player and bandleader who has performed with many of the greats of the music world and recorded more than a dozen critically acclaimed albums, John McNeil has been called “one of the best improvisers working in jazz” by Ben Ratliff, music critic for the New York Times. What makes his success particularly remarkable is that McNeil, 69, has a neurologic disorder that affects his breathing, facial muscles, and finger control, all of which are essential for his art.

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BORN DIFFERENT

McNeil was born with Charcot-Marie-Tooth disease (CMT), an inherited condition that affects about one in 2,500 Americans. Named after the three doctors who discovered it, CMT damages peripheral nerves, disrupting signals from the brain to muscles, much like static on a phone line. Over time, this causes muscles to weaken and start to shrink, says Stephan Züchner, MD, PhD, professor of human genetics and neurology, chair of the department of human genetics, and co-director of the John P. Hussman Institute for Human Genomics at University of Miami Health System. “Often CMT symptoms begin in the feet, which have the longest nerves, while the hands and other parts of the body can be affected later in the disease.”

In McNeil's case, the symptoms started in childhood. “By age 3, I had trouble with motor skills, and I was falling a lot because my feet had started to deform from the disease,” he recalls. This common early symptom often causes people to develop very high arches that impair walking because of weakness in foot muscles. “By the time I was 11, my spine started to get twisted, and I had to wear braces on my legs and body,” he adds.

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A SUDDEN INSPIRATION

When he was 10, McNeil saw a TV show that sparked a lifelong passion. “I watched Louis Armstrong playing the trumpet on a variety show and thought, ‘Man, that looks like fun!’ I bugged my parents to get me a trumpet, and I'm pretty sure the only reason they agreed was that they'd been told my disease was progressing so fast I might not live past age 13 or 14. Not only did they get me a trumpet, but they also gave me a bunch of Louis Armstrong records that I used to teach myself how to play.”

CMT is rarely fatal, says Dr. Züchner. “There are a few extreme cases when patients die at an early age while other people have very mild problems that may not start until they are middle-aged. There are more than 100 subtypes of CMT, and it's very difficult to predict how an individual patient will be affected except that people typically start with a few symptoms and over time, develop more.”

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REMISSION

At first, muscle and coordination problems made playing the trumpet difficult for McNeil, but he persisted. Then at age 16, he had a dramatic health turnaround. “The disease suddenly stopped progressing. I worked out every day, and my strength exploded. Within a year, I gained nearly 50 pounds of muscle and felt great.” Soon the Yreka, CA, native had more good news to trumpet. He'd become so skilled at playing his instrument that he was invited to play first chair in the Northern California All-Star Concert Band. By the time he graduated from high school, he was playing jazz trumpet professionally.

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RELAPSE

In the 1970s, after getting a degree in music and playing professionally around the country, he moved to New York City and began working as a freelance musician. He also began playing jazz and eventually started recording albums and touring internationally with his band. Then his disease flared up. “I started stumbling, sometimes with no warning, and dropping things. I couldn't get enough air out. Once, in the middle of recording a live album, I had trouble getting air out. I played so poorly that I begged the record company not to release it.”

After several years and through sheer determination, he staged a comeback, only to be hit with an even more devastating setback. “I got my band on the road and then this disease really whacked me. I lost control of my right hand and couldn't move my fingers well enough to play the trumpet.” Refusing to give up, McNeil spent the next year—and more than 1,000 hours of practice—teaching himself to play left-handed, then formed a new band called Lefty.

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A CLINICAL TRIAL

However, he continued to struggle with CMT symptoms and, despite daily workouts at the gym, became increasingly frail and disabled. “I was having so much trouble walking that the doctor said I needed a wheelchair. I said no and looked around for something—anything—that might help.” He enrolled in a small clinical study of human growth hormone, a drug approved by the US Food and Drug Administration (FDA) for certain medical conditions, but not CMT. “Within three months, I threw my cane away,” McNeil says.

He was eventually able to resume playing the trumpet right-handed, aided by custom finger braces. “When I was playing left-handed, my style and musical phrasing became more economical since I couldn't rely on music memory and was learning to play all over again. When I switched back to playing right-handed, I found I carried some of this increased clarity with me—making me a much better player,” he recalls. “The improvement was amazing!”

“It's extremely unusual for someone with CMT to regain any lost function,” says Dr. Züchner. “However, since there's no FDA-approved treatment for this disease, if patients find any therapy they consider helpful and it isn't causing any major side effects, then I wouldn't tell them to stop using it. Exercise, such as swimming or biking, is generally advised, not to reverse the disease, but to make the body more resilient to the loss of muscular strength.” Patients with CMT should also ask their neurologists about clinical trials of new treatments, he adds. “Some very promising research programs from the Charcot-Marie-Tooth Association (http://cmtausa.org) are expected to lead to clinical trials in the near future.”

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WINNING BATTLE

Although CMT has repeatedly interrupted McNeil's career, often for years at a time, and he continues to battle a wide range of complications, including joint problems, lung infections, and chronic shortness of breath, he's now in a band called Hush Point and performs regularly at New York City clubs with a group of much younger musicians. “Without CMT, I wouldn't be the musician I am today,” he says. “Because I've had to work so hard on my body and concentration to continue playing at a professional level, I find I've become more perceptive musically: I have to completely see, feel, and hear what each note is going to sound like before I play it. While it's a continuing battle to stay at this level, I'm determined to keep fighting this disease. Every time I go out on stage, pick up my trumpet, and start improvising, I've won.”

To learn more about John McNeil and his music, go to http://McNeilJazz.com.

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REBECCA KAMEN

ART: SCULPTURE

CONDITION: DYSLEXIA

SILVER LINING: TACTILE LEARNING

To Rebecca Kamen, the periodic table of elements most students have to memorize in high school is a thing of beauty. So are black holes, fossils, and Einstein's theory of relativity—all of which have served as inspiration for her science-influenced sculptures. What particularly fascinates the 66-year-old artist from McLean, VA, is the intricate wiring of the human brain.

As an artist-in-residence in neuro-science at the National Institutes of Health (NIH), she created one of her best-known sculptures, Butterflies of the Soul, which was inspired by the landmark discoveries about the nervous system of Santiago Ramon y Cajal, the 1906 Nobel Prize winner in Physiology or Medicine. “Studying the thousands of drawings he made of the brain's neurons under the microscope, each of which was a tiny masterpiece—and discussing them with neuroscientists at the NIH—was life-changing,” says Kamen.

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PURKINJE BUTTERFLIES

Entranced by Cajal's pictures of Purkinje cells (neurons in the brain's cerebellar cortex), she created a sculpture of vein-like “butterflies” perched on green mylar “branches,” each of which was hand stained in a process similar to one scientists use to prepare slides of cells for viewing under the microscope. Kamen's passion for the brain's neurons is fueled by the fact that she has dyslexia, a neuro-logic disorder that affects about 10 percent of people worldwide, according to Dyslexia International.

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LANGUAGE DIFFICULTY

“Everyone assumes that dyslexia is a reading problem because it's often diagnosed after a child starts struggling with written materials in school, but it actually starts at a much younger age with difficulty processing spoken language,” says Paula Tallal, PhD, adjunct professor at the Salk Institute and the Center for Human Development at the University of California San Diego. “For example, a child with dyslexia may have difficulty processing words with similar sounds, such as ‘dad’ and ‘bad,’ which in turn interferes with reading fluency.”

When Kamen was growing up in the 1950s in Philadelphia, her disorder went undiagnosed. “Schoolwork, especially reading and math problems, was such a struggle that I couldn't get into college in my state until my parents and the principal wrote letters advocating for me, and even then I was only admitted on probation,” she recalls. “One guidance counselor asked my parents why they were wasting their money sending me to college because, in his opinion, I wasn't cut out for it.”

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EXPERIENTIAL LEARNING

Kamen proved him wrong by not only graduating from Penn State University with a degree in art education but also earning two master's degrees. “It wasn't until I became a college professor myself that a friend and fellow teacher figured out that I had dyslexia. She pointed out that instead of getting most of my information from reading, which remains difficult for me, I go out in the world and learn through experience, such as talking to astrophysicists and neuroscientists in their laboratories when I'm working on sculptures, or holding things in my hands and examining how they work.”

A retired professor at Northern Virginia Community College, where she taught art for 35 years, Kamen remains devoted to turning neuroscience into art. Recently, she helped children hospitalized with traumatic brain injuries create paintings and voice recordings that she combined into a multimedia sculpture of a tree with its branches rendered to look like the brain's neurons. “One young patient I collaborated with, an 18-year-old who spent several months flat on his back in the ICU, found it so inspiring to create art during his recovery that he's now volunteering at the hospital to show other kids the amazing power of the brain to create beauty, even when it's injured.”

For more about Rebecca Kamen and her work, go to http://RebeccaKamen.com.

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JASON DaSILVA

ART: DOCUMENTARY FILMMAKING

CONDITION: PRIMARY-PROGRESSIVE MULTIPLE SCLEROSIS

SILVER LINING: AN IDEA FOR A FILM

In his mid-twenties, Jason DaSilva was on the fast track to success as a filmmaker. His documentaries, shot in India, Iraq, Kenya, and the United States, premiered at Sundance and other prestigious film festivals and were broadcast on PBS and HBO. In his spare time, he says, he played hard in New York City, socializing with friends, dancing in nightclubs, and soaking up what the city had to offer.

Then a year later, he was diagnosed with primary-progressive multiple sclerosis (PPMS), a neurodegenerative disease that attacks the insulation around nerve fibers, leading to problems with walking, balance, and vision. Unlike other forms of MS, PPMS usually doesn't have periods of remission in which symptoms partially or in some cases, completely disappear, says John Corboy, MD, FAAN, professor of neurology at University of Colorado School of Medicine and co-director of the Rocky Mountain MS Center at Anschutz Medical Campus. Instead, the disease tends to steadily worsen.

While some people with relapsing-remitting MS may progress to secondary progressive MS, PPMS is typically diagnosed in those who are older, says Dr. Corboy. “The mean age of onset is about 40,” he adds. For years it was assumed that all patients with PPMS would progress rapidly, but doctors today recognize significant variation in disease progression. “The hope is that immediate treatment of PPMS will have a significant impact on slowing progression,” he says. With FDA approval of ocrelizumab (Ocrevus) in March, doctors now have a treatment for patients with PPMS. DaSilva has not tried the drug, but all other treatments he has tried have failed.

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TURNING THE CAMERA INWARD

In DaSilva's case, the disease moved swiftly. While he was at the beach, filming his family on vacation, he fell down and couldn't get up. That prompted the idea of turning the camera on himself to make a documentary about his journey with PPMS. Over the next seven years, as he went from using a cane to a walker and then a motorized wheelchair, he chronicled his travels in search of a cure, including undergoing surgery in Italy to widen blood vessels in his brain, trying alternative therapies in India, and bathing in the waters of Lourdes, France, which are purported to have miraculous healing powers.

The movie turned into a love story when DaSilva met his future partner, Alice Cook, in an MS support group. (She doesn't have the disease; her mother does.) After their 2010 commitment ceremony, she became his primary caretaker, a role that created many challenges in their relationship as his health continued to deteriorate. “This is a very tough disease—and it gets harder every day,” says DaSilva. “One thing that makes me feel better is being able to share my life with others and hopefully be a source of inspiration with my story of triumph over tragedy.”

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INSPIRATION FOR AN APP

The most heartbreaking scene in the film portrays his anguish at being trapped in the couple's apartment when Alice was rushed to a hospital with heavy bleeding after suffering a miscarriage. DaSilva was unable to accompany her because he couldn't find a taxi that was wheelchair accessible. That devastating experience prompted DaSilva to develop a mobile app called AXS Map, which allows users to post detailed reviews about the accessibility of businesses, restaurants, and other public places. Think Yelp for those with disabilities. So far, more than 120,000 reviews have been posted on the app.

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DOCUMENTING DISABILITY

DaSilva's movie, titled When I Walk, ends on an upbeat note with the birth of his son, Jase, in 2013. Two years later, he had even more to celebrate when the film, which was shown on PBS's POV, won an Emmy Award and other honors. Now 38, DaSilva is working on a sequel that examines disparities in health care for people with disabilities across the United States. “In New York, I have home aides to help me function independently as an artist and filmmaker, but if I lived in Texas, I'd probably end up in a nursing home. So I filmed myself living in one for a few weeks to show people what that would be like,” he says.

“Because I'm legally blind and a quadriplegic, I film some scenes by attaching a camera boom to my wheelchair,” DaSilva adds. “Everything has to be carefully planned, and I need people to help me with everything. It's difficult to give up control, but I have lots to communicate. My art—and documenting my story for my son—is what gets me out of bed every morning.”

For more about Jason DaSilva and his film, go to http://WhenIWalk.com.

© 2017 American Academy of Neurology