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The Painted Words Of An Autistic Art Star

The text-based paintings of artist Dan Miller allow him to express the depths of his heart far more vividly than words ever could.

“STOP SAYING THE R-WORD,” reads a screen-printed poster that hangs in the window of Creative Growth Art Center, a nonprofit organization housed in a former auto-repair shop in downtown Oakland, California. In the center’s studio, artist Dan Miller hunches over a table covered in brushes and watercolor paper and begins to paint the alphabet. In blue acrylic that matches the blue hockey helmet he always wears, he scrawls a giant A, B, C, D, layering letters atop one another until they’re no longer legible. While he works, he chants cryptic phrases that sound like zen koans or fragments of experimental poetry: “Pull the light bulb from the socket? No,” he says. “Alphabet cookie, homemade cookie, right? Pull it gently, gently, right?”

“Right,” says Creative Growth staffer Kathleen Henderson. When Dan gets to Z, she hands him a fresh sheet of paper. Without taking a breath, he picks up a ballpoint pen and starts a round of furious scribbling. “Click, click, click,” he chants. “Click, click, click.”

Born in 1961 in Castro Valley, California, Dan was diagnosed with autism in early childhood. As he struggled with verbal communication, drawing became his primary mode of expression.

 

Diagnosed with autism at an early age, Dan Miller has become an artistic tour-de-force under the tutelage of the Creative Growth Art Center. Photo: Hannah Hughes

“From the time I can remember, Danny always liked to draw,” Cara Miller, Dan’s sister, told Folks. “He would draw on anything when we were kids. Inside books, on scrap paper, anything.”

As Dan was growing up—in an era in which people with disabilities were often institutionalized—his relatives never suspected that this compulsive drawing habit would someday propel him to art stardom. But they did invest significant time in his education: As a child, in addition to attending special education classes and summer camps, Dan spent hours every night working on reading and writing with his mother and grandmother, both schoolteachers. “Our grandmother was very dedicated to educating him above and beyond what he was getting at school,” Cara says. “Our Mom was always looking for tools and things that would help him learn—so he could learn to type, she got him one of the first portable computers ever made, which he still has.”

Miller’s art is reminiscent of the work of Cy Twombly.

When he wasn’t drawing or typing, Dan obsessed over tools and mechanical things, poring over his father’s catalogs for Grainger’s hardware, or taking apart clock radios, overhead fans, and light bulbs. This fascination with mechanics, as well as his ritualistic childhood writing practice, now shows up as motifs in Dan’s artwork, which weaves fragments of memory into abstract compositions. (Words like ‘‘socket,’’ ‘‘light bulb’’ and ‘‘electrician’’ recur in his paintings.)

Almost twenty years ago, at the recommendation of a caseworker at his residential program, Dan started working out of Creative Growth Art Center. Founded in 1974 by a psychologist and an educator in their Berkeley garage, Creative Growth now provides studio space and gallery representation for more than 160 artists with physical, mental, and developmental disabilities.

With the guidance of staffers at Creative Growth, Dan’s scrap paper drawings evolved into wall-sized paintings, which eventually made their way into the elite reaches of the fine art world. Now, Dan is one of the best-known artists working out of Creative Growth. His work is included in the permanent collection of the Museum of Modern Art and the Smithsonian American Art Museum. He’s had solo exhibitions at renowned galleries like Ricco Maresca, Galerie Christian Berst, Paris, and White Columns, New York. In a collaboration with Creative Growth Dan’s marker drawings even found their way into Vans stores as a series of unique limited-edition skate sneakers. His works sometimes sell for tens of thousands of dollars apiece.

Miller’s paintings often seem to deconstruct language.

Dan’s dense tangles of dark lines sometimes recall Cy Twombly’s demented cursive, and his scrawled phrases echo Jean-Michel Basquiat’s graffiti-inflected compositions. (“Rocketship pain,” reads one painting, in dripping black letters. “COFFEE COFFEE COFFEE,” says another. “ROOF HOUSE CARPENTER ELECTRICIAN” reads another, inside a childlike line drawing of a house with a pointed roof.) But any apparent stylistic mimicry is coincidental: Like most of his fellow Creative Growth artists, Dan never formally studied art. Instead, he works from what seems like an intense physical compulsion: Drawing seems a requisite bodily function, an instinct it would be unwise to suppress.

“He really doesn’t like to be without something to work on,” Kathleen says. “He’s always drawing. Because he works so much, things really have a magisterial mark.” Watching Dan work, you get the sense that, if the paper supply were to run out, momentum might propel him to start drawing on the surface of the table, the floor, the walls. “When he comes over, I know my pens and paper of any kind are subject to being hijacked,” Cara says. “We’ve learned to get our pens and regular paper in bulk from Costco. I make sure to have some stocked at all times.”

Photo: Hannah Hughes

Contemporary art critics, gallerists, and psychologists of creativity have thoroughly expounded on the significance of Dan’s work, which, according to Bay-Area poet Kevin Killian, “achieves a clattering poetry of infinite discrimination.” Some comment on how his text-based paintings appear to deconstruct language; others speculate on the level of intentionality behind the artist’s methods. But as with any art worth looking at, his practice contains a big element of mystery, sometimes best left unspoiled by over-analysis.

“His work kind of speaks for itself,” Cara says. “It’s still difficult to really know what is happening in his head and heart, other than the basic things. It must be so hard for him to not be able to tell us things, to express what he is feeling and to tell us what he wants, aside from some of the basic things in life. I do believe that he has the desire to connect with people and to express himself.”

Art has helped him do that: “Creative Growth is the key-master that opened some of those doors for him. Danny’s life and the challenges he faces go well beyond what most people see,” Cara says. “Creative Growth and the people in it are some of the best parts of Danny’s life. That, and hamburgers. He loves hamburgers.”


This is part four of four of Folks’ series of profiles of some of the amazing artists at Oakland’s Creative Growth Arts Center, which serves artists with developmental, mental and physical disabilities.

Q&As

Babies, Get Ready For Blast Off!

When a baby needs an orthotic helmet, artist Paula Strawn is there to make wearing it a lot more fun.

Where most people see a boring white helmet, painter Paula Strawn sees a blank canvas. Aviator shades? Flowers? Beach scenes? The sky’s the limit!

When parents learn that their baby needs to wear an orthotic helmet to correct an abnormal head shape (often due to something called positional plagiocephaly or less commonly cranisosynostosis), they’re often dismayed by the ugliness of the helmet and the unpleasant reactions from strangers.

Paula Strawn of Lazardo Art works six days a week to give these families something to smile about. Parents overnight her their baby’s helmet and she paints aviator shades, sports logos, picture book scenes and any other custom designs the parents can dream up before shipping the helmet back to them. She’s been at it for over a decade, painting thousands of helmets in the process.

Folks talked to Strawn about how she discovered this creative calling and why it helps families view the orthotics in a whole new light. The following excerpts have been edited for clarity and brevity.

How did you get into this niche of painting?

I have always drawn or painted old style artists. I was a stay-at-home mom with kids, and as they got older I started painting more and more for friends and family and then friends of friends. Then one of my two younger daughters’ first grade teachers showed up at my door with her daughter and granddaughter, and the granddaughter was wearing a helmet. She just said, “Paint this ugly thing.”

I did, and in the orthotic office that they were going to, a really sweet man named Kevin Bitting asked if I would paint more. But I was thinking it would just be one more thing in the pantheon of things that I would paint, and here we are, 13 years later, it’s taken over my life and business.

Kevin talked up my work to the parents that came in. He was a total fan of parents having their helmets painted because he saw the difference he made in their attitudes. I’m sure he saw a ton of parents – because I have – that came in crying and really upset that their cute and adorable kid had to wear this thing. He asked for a photo album that I kept updated, so there were photos that were waiting there for people to look at.

How long does each helmet take?

It’s rare that a helmet takes less than six hours to paint. Except for one design that we won’t go into, I paint the same day I get the helmet. If I can paint by four o’clock, then I ship out the same day. And if the design takes longer, I finish it the day I get it, and I ship it the next morning. I work six days a week, and I love what I do.

What designs get requested most often?

Aviator helmets are super fun, because it can be personalized and people put different things on it. I’ve painted hundreds of these things now. For girls, the girl aviator’s super cute, but lately I’ve done a ton of flower designs. I love when it’s the Wild Things or some other book character. I painted the NASA space helmet last night that has the Milky Way reflected in the bezel, which is fun. People come up with great stuff.

How does the process work?

People email me or they get hold of me through Facebook and we do the whole thing by email. They write and tell me what design they’re thinking of. Sometimes I have them send images or I send them images. We talk it through. They don’t have to choose something that I’ve done before. They can come up with some completely new idea. I love when people make me a Pinterest page and invite me to view it because then I can get a sense of what style they like or what colors they like.

Recently, as of this year, we have the deal now with FedEx so that our parents get 30 percent off for shipping, which is super great. We should have done this before, but we had no idea we could do this. My husband does the shipping and the financial end of it and my job is to answer emails and paint until my eyes can’t be open anymore.

How do people respond to your art?

I’ve had many, many parents crying on my couch over their kid having to wear this. I think the design part of it is therapy because then they start concentrating on what do we want on our baby’s helmet, and what colors does he or she look good in. It’s the response they get when they’re out and about with their baby because from what I understand, people get a lot of pity or “Oh, my gosh! What’s wrong with your baby?” But when it’s painted, that just totally flips. Then people are like, “Oh, my gosh! That’s adorable!” And the baby’s getting smiled at or a parent is able to explain a little bit what this is.

I get a lot of parents that will send me a picture when the baby graduates from the helmet to show me their round-headed kid, and they’ll say things like, “We’re so happy to be able to fix his head, but we kind of are missing having that.”

Do some families keep the helmet even after their kid stops wearing it?

Yes, I get a lot of pictures of stuffed animals wearing a baby helmet, which is amusing. I did one helmet for a big Notre Dame fan dad and it ended up in his Notre Dame cabinet of things. He played football for Notre Dame back in the day and so it sat next to his helmet in his Notre Dame cabinet.

Where does the name Lazardo Art come from?

There’s an artist illustrator named William Joyce who wrote a book called Dinosaur Bob and the Adventures of the Family Lazardo. It’s one of my kids’ most favorite books. It’s one of my most favorite illustrators. I tried to get my husband to change our last name to Lazardo because then we could be the Family Lazardo. He said no, but it just kind of always stuck in my head. It’s a nod to William Joyce, who I loved and his art for children’s books and the Family Lazardo.

The Good Fight

The “Good Witch” Artist Finds Her Niche

Fun-loving psychedelic explorer Rickie Algarva was never able to hold down a job due to her learning disabilities. Now 76, her artworks sell for up to $750 apiece.

Hamburgers grow on trees, a man on a hoverboard flies over a waterfall, Ra the Sun God stares down a monkey riding a horse: If you saw Ricketta “Rickie” Algarva strolling down the street with her walker one day, you probably wouldn’t guess that these sorts of wild images churn beneath her orange bucket hat. At 76, with cropped white hair and hearing aids, the petite, soft-spoken artist creates psychedelic worlds as dazzling as Lewis Carroll’s Wonderland.

For the past twenty-nine years, Rickie has worked out of Creative Growth Art Center, a nonprofit organization that serves artists with developmental and physical disabilities in Oakland, California. Founded in 1974 by an art educator and a psychologist in their Berkeley garage, Creative Growth now provides more than 150 artists with supplies, gallery representation, and professional studio space in a cavernous former auto-repair shop in downtown Oakland.

“Shall I add some birds here?” Rickie muses one morning in the studio, painting technicolor accents onto her latest wooden sculpture. It features a few of her trademark motifs: Waterfalls, wine bottles, flying people, flying hamburgers. (Rickie emphasizes that her interest in hamburgers is purely aesthetic: “I don’t eat hamburgers. Only once in awhile. They’re greasy. All that fat in ‘em.”)

Photo by Hannah Hughes.

Born premature at East Oakland Hospital in 1941, infant Rickie weighed just three pounds, eleven ounces. “I wasn’t expected to live,” she says, let alone to become a professional artist. While growing up in Oakland, decades before the passage of the Americans with Disabilities Act, she didn’t receive much support for the learning disabilities that resulted from her premature birth. As a student at Fremont High School, she was constantly made to feel “slow.”

“Back then, it was different,” she says. “It was hard for me to learn.” To escape, as a kid, “I was always playing with polliwogs in the creek. I was a tomboy.” She also drew pictures: “I always wanted to be an artist.” But nobody encouraged her pursuit of art. Rickie’s father, a first-generation Italian immigrant who worked at the Port of Oakland, “was very high-strung, and had a temper,” she says. “My mother was the sweetest person, but my father would get real mad if he tried to show me a problem and I couldn’t do it. It wasn’t a good environment.”

She holds no resentment, though: “You can’t change the past,” she says, channeling the wise monkish figures she often draws, who levitate with eyes closed on magic carpets. “It’s already gone.”

In Rickie’s generation, people with disabilities usually had two dismal options: either to be institutionlized.. or to ‘go with the flow’.

In Rickie’s generation, people with disabilities usually had two dismal options: “Either to be institutionalized or pushed to the edges of society, or to ‘go with the flow’ and fake their integration into ‘regular’ or ‘normative’ society,” Creative Growth Studio Manager Matt Dostal says. Rickie was able to do the latter—she attended mainstream public schools, married, had a daughter, then got a divorce—but it wasn’t until she joined Creative Growth in her forties that she found the artistic and educational resources she craved growing up. Since then, she’s created an astonishing body of Surrealist work: Hand-bound books, colorful rugs, painted wooden dioramas.

“Creative Growth kickstarted my art career,” Rickie says. “There’s no words to tell you how happy I am being here. My art makes me happy, and it makes other people happy, too. Especially when you sell it. [Creative Growth] gave me a job. I never had a job outside the home. My learning disability made it difficult to find employment.” Now, her rugs sell for up to $750 apiece. Her vivid colors and strange creatures are a hit in the San Francisco Bay Area, the epicenter of the sixties’ hippie modernist art movement.

 “I never had a job outside the home. My learning disability made it difficult to find employment.” Now, [Rickie’s] rugs sell for up to $750 apiece.

“Rickie has such an unassuming physical presence, but she’s a fun-loving psychedelic explorer,” Dostal says. “For Christmas one year, Rickie asked her sister for a Cream album—because she thought it would help her with her artwork.” But unlike the British rock supergroup, Rickie seeks no chemical assistance for her visions. Her artistic inspirations range from Egyptian mythology to a guy she saw hoverboarding on the sidewalk to her favorite TV show, Ancient Aliens, on the History Channel.

Usually, Rickie is as amused and mystified by the products of her imagination as anyone. “Where the heck do you come up with this stuff?” asks Kathleen Henderson, a Creative Growth staffer. Rickie shrugs: “It’s almost like a freestyle. It all just comes out of my head.”

In May, after celebrating her 76th birthday and watching her 47-year-old daughter graduate from Merritt College with a degree in Genetic Counseling, Rickie started working on illustrations for a new children’s book. Instead of adding words, she’s leaving blank lines beneath each illustration, so that children can interpret the pictures themselves and write their own stories.

Photo by Hannah Hughes

When I ask how the characters in one drawing plant their hamburger trees, Rickie deadpans: “These kids just throw hamburgers in the ground and they grow,” she explains. “If they wanted to grow a sesame seed bun, all they’d have to do is put sesame seeds in the ground.” She starts laughing hysterically, tears streaming down her cheeks. “Oh my goodness,” she says. “Oh my goodness.”

She points to a character wearing harem pants and a bowtie. “He’s a fantasy guru,” she says. “He’s gonna change these snakes into tree branches by casting a spell over them.”

I ask Rickie if she ever casts similar spells. “No,” she says, with a sly smile. “I’m a good witch.”

She colors quietly for a bit, then pauses: “You know, I was lying in bed the other night, thinking about what my next drawing is gonna be, and I was thinking it would be some kids riding a tricycle. But instead of wheels on the tricycle, do you know what I was thinking there would be?” She raises her eyebrows.

“I think I might know,” I say, and she nods.

“Hamburgers,” she says, and grins, then resumes coloring her fantasy guru’s harem pants pink.


This is part one of four of Folks’ series of profiles of some of the amazing artists at Oakland’s Creative Growth Arts Center, which serves artists with developmental, mental and physical disabilities.

The Good Fight

The World’s Only Classical Music Ensemble For The Mentally Ill

After his own career almost unraveled, Ronald Braunstein founded the Me2/Orchestra to help fight the stigma against mental illness in the classical music community.

Prizewinning conductor Ronald Braunstein had a much-heralded early career in the classical music scene that began to unravel due to his bipolar disorder. But his experience with this condition eventually led to the founding of the Me2/Orchestra: the world’s only classical music ensemble for the mentally ill (and their advocates).

The conceptual origins of Me2/ date back to 2007, when Braunstein, then living in Prague, observed the huge gap in music education between public and private schools. “I wanted to create an orchestra that was inclusive of students from all socio-economic levels. The idea never went anywhere in Prague but I picked up that seed a few years later in Burlington [Vermont] – only this time my heart was in it. The inclusion I sought had to do with mental health rather than economic disparity,” he says.

There was good reason why mental health was a priority: Braunstein had just been fired from a job because of his bipolar disorder. “I was in the process of sorting out my mental and physical health and I knew I didn’t want to get a job where I could be discriminated against again. I decided to create my own orchestra and ensure that it was a safe place,” he says, before adding, “I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”

 

Ronald Braunstein.

I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”

Braunstein, who was born in Massachusetts but raised in Pittsburgh, says that as a child his father took him to see a doctor, who diagnosed him with “bad nerves” and “prescribed some type of medication, maybe it was valium.” He adds how, “Over the years several people told me that I needed to see ‘a doctor,’ but this was during the ’70s when nobody spoke [about] mental health and I honestly didn’t know what they were trying to tell me.” For many years he contended with symptoms “but things started to get really revved-up in [his] early twenties.”

While studying at New York City’s famed Juilliard School his condition became severe. “I ate very little and didn’t sleep. I thought that food and sleep took away my brilliance. I experienced all of the classic bipolar behavior: delusions of grandeur, rapid pressured speech, irresponsibility in dealing with money, etc.”

However, he managed to graduate from Juilliard in 1978 with a degree in conducting. And at age 23, he became the first American to win the Gold Medal in the Herbert von Karajan International Conducting Competition in Berlin. This prize greatly boosted his early career and took him all over the world as a guest conductor at orchestras ranging from San Francisco to Norway to Japan. He later joined the Juilliard conducting staff.

Braunstein was first diagnosed with bipolar disorder in 1985. “I took a friend to his psychiatrist appointment,” he recalls. “And, through an odd turn of events, I walked away from that office with my own diagnosis.” He feels that the stigma surrounding mental illness has decreased since the time of his diagnosis, but “we still have a long way to go.” That said, he hasn’t encountered any stigma-related obstacles when trying to arrange a Me2/ performance. And he views the orchestra as helping to “change audience members’ perceptions” about the mentally ill by “showing what we are capable of in performances.”

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted. Of brilliant composers likely afflicted, he gives a slew of examples: Schumann, Tchaikovsky, Mahler, Berlioz, Bruckner, Rachmaninoff, Elgar, Handel, Holst, Mussorgsky, and Rossini. Another prominent example is his favorite composer, Beethoven. He also admires Tchaikovsky, Johannes Brahms, Otto Klemperer (whose battle with bipolar disorder was well-documented), and Igor Stravinsky. Among his influences are Leonard Bernstein, Seiji Ozawa and, especially, his mentor Herbert von Karajan, the longtime conductor of the Berlin Philharmonic, who taught him “how to really hear the orchestra” while conducting.

Braunstein conducting the Me2/Orchestra.

Of his own dual experience with gifted musicianship and mental illness, he says: “When I am in a manic phase I can be brilliant, or so it seems. When I come to a more stable point I can see whether the brilliance was actual or an illusion. And then there’s the question I always have after conducting a great concert: whether it was my musicianship or my illness.” He says that his symptoms are managed more effectively these days and are less likely to distort his self-perception. Previously, he was more inclined to have a “lack of insight into how [he] was doing” and hold an unrealistic opinion of his performance.

The question I always have after conducting a great concert [is] whether it was my musicianship or my illness.

The flagship chapter of Me2/ was established in September 2011 in Burlington, Vermont. September 2014 saw the launching of the Boston chapter. Though many members have diagnosed conditions, Me2/ also includes those who support the mentally ill, along with mental health professionals, such as one psychiatrist who plays trumpet for the Boston orchestra.

Me2/ has performed at several formidable venues, such as prisons and psychiatric hospitals – settings that don’t exactly evoke thoughts of classical music, but actually have provided the most engaged and appreciative audiences. In such places, the music “reaches their souls,” observes Braunstein, who adds how Me2/ has “never been unappreciated” at any type of venue.

 

Currently, fifty musicians belong to the Me2/Burlington, and the Boston chapter has 35. The orchestras perform 5 or 6 times per concert season. Of the musicians who join, almost all stay for a long period. There are no auditions to worry about. Braunstein’s programs are “designed for the middle-level of the orchestra. For the people who are less experienced, we offer coaching but technical perfection is not what we are about. We have professional musicians sitting alongside near-beginners and it works.” Many other members are skilled amateurs who “received extensive training earlier in life.”

Among mentally ill members, conditions range from depression to PTSD to schizophrenia to dissociative disorder, among others. Members aren’t required to disclose their diagnoses, but some do so “within the first 5 minutes.” Others are less than forthcoming at first. Braunstein recalls one member who “didn’t want her name printed in materials because she didn’t want to be associated with ‘the mental health orchestra.’ She didn’t disclose her diagnosis for a long time; however, after playing with us for a few years she has now become an outspoken advocate about erasing stigma.”

Though a few members prefer to keep to themselves, many others become friends and socialize outside of Me2/. Braunstein describes rehearsals as “extremely social” and adds that the “positive energy is palpable.” He recalls one man who, after a few months with the orchestra, had reconnected with his long-estranged extended family because Me2/ “gave him the confidence and self-respect he needed.”

Another member considers each Me2/ rehearsal his “detox” from the remainder of the week. And for some members with a tendency to self-isolate, the orchestra “gets them out of the house and surrounded by supportive friends once a week.”

Braunstein currently lives in Burlington, Vermont, with his wife, Caroline Whiddon, a Me2/ cofounder who serves as Executive Director and also plays the French horn. They drive back and forth from Burlington to Boston each week, as the Boston orchestra rehearses every Monday and the Burlington one every Thursday.

“[Music] is a space to be in that is safe and beautiful… it has given my life meaning.”

The conductor’s future aspirations are “to continue to grow and learn as a musician and a human being. Me2/ is my project for life.” His life-project has grand plans in store: A Me2/ chapter has just launched in Portland, Oregon, and Braunstein anticipates another chapter launching this summer in Atlanta, Georgia. In three years, he hopes to have 20 affiliate programs in various cities. Ten years from now, he sees Me2/ having “affiliate programs nationwide, including orchestras and various ensembles.” He also envisions “hosting conferences where Me2/ members from various locations come together to rehearse and perform in massive events.”

Though some afflicted persons might view music as an escape from psychological duress, Braunstein prefers to think of music as “a space to be in that is safe and beautiful.” When asked about the effect of Me2/ on him personally, he concisely replies, “It has given my life meaning.”

Me2/ is open to ages 13-80+ and there’s no cost to participate. For further information, see the website.

Q&As

The In-Between Days Of Having Cancer

In her powerful graphic memoir, comic artist Teva Harrison shines light on "the bogeyman that is my cancer."

When Canadian artist Teva Harrison was preparing to undergo stereotactic radiation—a medical procedure that requires the patient to be vacuum-sealed into a mould that feels like a bean bag chair—she couldn’t stop laughing. “I felt wrapped up like a tray of supermarket sushi,” Harrison writes in her graphic memoir, In-Between Days, which chronicles her life after being diagnosed with incurable metastatic breast cancer at age 37. In a black-and-white comic, a smiling cartoon Harrison lies shrink-wrapped on a hospital bed and asks her technician: “Would you mind taking my picture in here so I can show my husband how weird this process is? Please?”

This sense of humor and eye for the absurd is woven throughout the devastating personal essays and minimalist pen-and-ink comics that make up In-Between Days. That doesn’t mean the book is Pollyanna-ish—Harrison confronts head-on the heartbreak, terror, and physical agony her cancer wreaks—but that these pages contain equal parts hope and dread. “I am chock full of hope, mostly because I need it to get through every single day,” Harrison writes. The “Acts of Hope” illustrated in one comic include “wearing seatbelts in cabs; buying recycled toilet paper; 7-step skincare regimen—because who does these things if they don’t believe in the future?” Perhaps the bravest act of hope Harrison performs is that of drawing and writing about her illness, which presumes the possibility of finding meaning and connection in the midst of suffering.

Teva Harrison. Photo by David P. Leonard.

“When I was first diagnosed, I didn’t want to talk to anybody,” Harrison writes in the book’s preface. “I have since learned that it is the unspoken that is most frightening. Shining a light on my experience takes some of the power away from the bogeyman that is my cancer. I am taking my power back.” This means Harrison is unflinching in her illustrations of cancer’s grisly realities—from opiate-induced emotional numbness and vomiting to the foggy memory and vaginismus that follows surgical menopause—but also that she refuses to let pain block out light. She offers snapshots of her sustaining marriage and friendships; reflections on her family history and Jewish heritage; and childhood memories of snowball fights and summers spent floating with her sisters in “the mermaid pool,” a super-sized metal horse trough with a dedicated hose.

Shining a light on my experience takes some of the power away from the bogeyman that is my cancer.

In a society that often dehumanizes and shuts out the seriously ill—as Harrison puts it, “When we get sick, we disappear”—this portrait of living in the “in-between spaces” offers the antidote of empathy. We spoke to Harrison about the making of In-Between Days, the downsides of prevention messaging, and how to sustain hope and humor even when “wrapped up like a tray of supermarket sushi.”

“Living with this disease has changed the way I look at people around me,” you write. “I wonder what pain they bear silently.” How has your experience of compassion—your understanding of other people’s pain and suffering—changed since your diagnosis?

I don’t look like a person who has terminal cancer. I move through the world as a regular person—and yet I have all this pain and challenges I have to work through, from getting out of bed to getting where I need to be. It changed how I look at people — if strangers are cranky, pushing you on the subway, struggling to get a seat, I try to think about what might be behind that, what’s difficult in that person’s life, what’s making it harder for them to get through the world.

While you acknowledge the unrelenting pain and depression that comes with living with cancer, there’s more hope than despair in the pages of In-Between Days. Where do you find your wellspring of hope?

Pain Management.

An element of it is how I’ve always seen the world. I’ve always erred on the side of optimism and beauty and appreciation and gratitude. But I have to have hope. I think it’s the only way you can live with this sort of disease and go on living, doing the things you love. A lot of my hope comes from the firm community I have. I’m really lucky in that regard. I have good family and good friends. That goes a long way because it means I have support—it’s easier to feel hopeful when you have support.

I get hope from watching the news and seeing how many new treatments are being developed all the time. I get hope from reading stories of exceptional responders—people who have lived a really long time with this disease. Because it is possible. Maybe I will get to have a normal lifespan. I’ll get to see change that is meaningful. So long as it’s possible, there’s hope there.

How did writing In-Between Days change your understanding of yourself, your own illness, and illness in general?

Before my diagnosis, I was director of marketing for the Nature Conservancy of Canada. My job had become very much entwined with my identity. I lost that when I got sick and had to stop working. There was this chunk of me that was missing. I didn’t have the ease of identity that you have when you have the knowledge that you’re contributing to society. Writing this book helped me work out what my place is now, how I fit in as a person living with illness, and how I can still contribute to the cultural conversation. The act of writing it helped me work out in real time how I feel about what I’m going through and how to communicate it. Writing and drawing about it caused me to think about being sick or having an incurable illness in an analytical way.

“I know my cancer is genetic, but I can’t help but blame myself sometimes,” you write. “I wonder what awful thing I did to deserve to get cancer. I run through all the bad things I’ve ever done.” You’re an atheist, but still occasionally entertain the notion of illness as some sort of divine punishment for personal moral failings—a common impulse for anyone looking for an answer to the question “why me.” Why do you think you sometimes go down the road of blaming yourself or looking for things you’ve done to “deserve to get cancer?”

Cancer gratitudes.

We live in a society with so much messaging about prevention. With all that prevention messaging, where we were told ‘if you do this and this and this, you’ll be okay,’ it feels like if you do all these things and you’re still not okay, it must be your fault. That messaging is really deeply embedded in our culture. It comes, in some cases from the medical community, and also from other people. It’s a hard one to get around. Many of us feel this way. I’ve been told by many medical profs that this disease was coming for me, that it’s hereditary—but I still think, “well, I was on the pill for a few years, what about this and that,” things I did, be they moral or physical. I feel awful for people who don’t have that reassurance. I don’t know how to reconcile these feelings.

Then there’s the hyper-personal element—I’m Jewish and we have a special kind of guilt. My husband was raised Catholic and I was raised Jewish—the two primary guilty religions. He once said that Catholics feel guilty for what they’ve done, Jews for what they haven’t done.

“Friends stop themselves from sharing their problems, mumbling, ‘I mean, I have no right to bother you with my little problems. You have cancer,’” you write. “And in that moment, they’ve simultaneously raised me up and shut me out.” People often get uncomfortable and withdraw when a friend of theirs is ill. What are the most helpful things friends have said or done for you during illness?

Invisibilities.

Every cancer patient appreciates different things. For me, a big part has been offering something concrete. If someone asks, “What can I do to help?” I rarely have something at the tip of my tongue. But if someone says, “Can I bring you soup?” or “Do you need rides? I’m available x and y day”—that’s helpful. Sometimes my brain is really cloudy and I’m not able to come up with something – I appreciate people just being regular friends and telling me what’s going on in their lives, even if it feels like complaining.

But it’s really just showing up. There’s gonna be a misstep on one side or the other on any relationship. It’s more acutely felt with cancer or any serious illness. We always have to negotiate. Language is imperfect. Communication is this iterative process—we’re able to get there if we both try.  

How has this illness affected your friendships?  

With metastatic breast cancer, friendships are sometimes really brief and really bright. Because survival is so short, everyone I’ve met with this disease is trying to pack as much as they can in. We’re all living hard and bright. And that’s a special thing to experience with someone.

Which artists and writers most influence your work?

Helen Frankenthaler is my favorite painter. I particularly like her works picturing big objects pressing against tiny little narrow spaces. Writers, I love Lydia Millett and Lydia Davis—my two Lydias. Art Spiegelman. I love Maira Kalman—her book My Favorite Things.

You manage to hold onto your sense of humor during treatment — “I couldn’t stop laughing,” you write. “Having been wrapped up like a tray of sushi, I asked the technician to go into my purse, take out my phone, and take a picture so I could show my husband.” How do you make yourself laugh in the midst of cancer treatment?

Cover art to In-Between Days.

I feel like who we are when we’re well is who we are when we’re sick. If we have a tendency to laugh about things when we’re well, I think we’re still laughing when we’re sick. If we tend to take things very seriously, we do that when sick. Humor is partly a coping mechanism, a way of getting through it. Part of it is also the fact that this was all new to me, since I had no real experience with the medical industry. I was discovering things like a little kid— “This is so cool! This is amazing!” They can’t stop laughing. To a degree, I’m like that. It keeps me from going in a dark direction. I have the capacity for both, and finding the humor in something helps me to not just see how dismal it can be.

You can buy a copy of In-Between Days on Amazon here.

Profiles

The Adopted Artist With Her Head In The Clouds

Anxiety, depression, and the nature of memory intertwine in Andrea Joyce Heimer's unforgettable paintings.

Like many young artists, Andrea Joyce Heimer spent her early twenties stuck in an office job that she didn’t like while she tried to find her creative voice. Unable to afford art school, she was determined to teach herself to paint in a photorealistic manner — the only style she thought could convey the adolescent memories she wanted to depict. But no matter how many instructional books she bought or how hard she tried, she couldn’t master perspective. Eventually, she quit out of frustration.

Andrea Heimer.

Around the same time, Heimer, who had been struggling with anxiety and depression since high school, fell into one of her deepest depressions. She couldn’t get herself out of the house for weeks. “It was like I just hit a wall,” she says. “I thought, ‘I’m going to off myself unless I figure out something to keep me busy.’”

Still surrounded by art supplies, Heimer decided pick up a brush again. This time, however, she wasn’t going to worry about what the painting looked like. She told herself, “I’m just going to do it how it comes out. I’m going to return to childhood where I just draw for the fun of it.”

She ended up painting four pieces. The paintings were all flat, with no shading and the perspective was skewed. But there was something appealing about them. With encouragement from her husband, she reached out to some folk art galleries and received a positive response from the first place she contacted. She was still stuck in a depressive loop, but that positive reply gave her just enough of “a little oomph” to make another painting and then another. Slowly but surely, that momentum built on itself, eventually pulling her out of her dark hole.

Having dispensed with spatial perspective, her paintings are filled with layers of detail, all floating on the same plane

Today, Heimer is a full-time artist, splitting her time between an MFA program in New Hampshire and her home in Washington. Having dispensed with spatial perspective, her paintings are filled with layers of detail, all floating on the same plane. Objects and characters that might otherwise be hidden are brought into view, unveiling the mystery and violence hidden just below the surface of suburban neighborhoods. The effect is akin to Grandma Moses meets David Lynch. In her acrylic world, ordinary rites of passage collide with mystical rituals: cult members argue over wallpaper choices, giant wolves suckle teenage boys, and a devoted husband drinks his wife’s bathwater. At the same time, kids get bowl cuts in the living room, bad boys hang out at the baseball diamond “being dangerous and irresistible,” and girls cultivate crushes that are mythical in scope.

Often only 16 inches by 20 inches, or smaller, her paintings reward viewers who pause for a closer look. Minute patterns on wallpaper and clothing reveal themselves to be cowboys and Indians, thunderstorms and rainbows, or a starry cosmos of planets and comets. These repeated patterns are therapeutic for Heimer. Even when the painting doesn’t aesthetically need the patterning, Heimer needs it. “For someone who has tendencies to overthink things, it’s such a relief to go do something repetitive,” she says. “It’s that meditative process of drawing the same tiny design over and over and over again–you can lose yourself completely for two hours just doing that.” To paint these details, she leans close to the canvas, keeping her face only an inch away from the surface. “I’m sure that’s terrible for my spine,” she says. “But it’s that intimate time spent with that object that breathes more life into it. I miss that when it’s not there.”

It’s that intimate time spent with that object that breathes more life into it.

Heimer began developing a keen eye for detail early on. When she was in third grade, her parents pulled her aside after dinner and told her that she was adopted. Visibly uncomfortable, they kept the conversation short, and didn’t discuss it again. Determined to never be surprised like that again, she became a studious observer of life in her hometown of Great Falls, Montana.

“You’re going along, you have this normal life … and then all of a sudden you find out that your parents aren’t who you think they are,” explains Heimer. “Then that opens a door. You’re like, ‘Okay, well what else isn’t what it seems?’’’

Great Falls sits on the northern Great Plains, surrounded by vast stretches of open prairie. “You can literally find the edge of town and go stand there. There’s nothing beyond it, which is an unnerving thing,” says Heimer. The neighborhood she grew up in, however, felt like a typical suburb. She lived a couple blocks away from her elementary school. There was a park across the street from their house and beyond that a golf course.

Heimer would spend hours riding her bike past the houses, coming up with narratives about the lives inside. “I don’t know if there’s some underlying perversion in me, or something. Maybe it’s a normal tendency. You ride the same route and you start noticing the same people and you wonder, ‘Are their lives like my life?’”

Heimer at work in her studio.

As a goth teenager, she’d go to music shows and sit in the parking lot because she was more interested in listening to people’s conversations than the bands inside. “I would sit in my car a lot with the window down pretending to read a book or something, but really I was listening to the people who were standing next to my car talking,” she says. “Saying it now, I’m like, ‘God, what a weirdo. Just go talk to somebody like a normal person.’”

All those years of listening have turned into a wealth of stories to draw upon — and led to conversations that Heimer could never have predicted as a teen. “The paintings are almost like — this is going to sound so stupid — but I feel like each one has its own personality or its own magnetic force,” she says. “I feel like they’re little people trying to help me along.”

I feel like each [painting] has its own personality or its own magnetic force… like they’re little people trying to help me along.

The lively, diary-like revelations in her paintings seems to help others open up as well. “I don’t know if it’s because a lot of them are very embarrassing, but you would not believe the things that people tell me at openings,” she says. “After a two-minute conversation, they’ll confess something really deep or embarrassing or touching. I wasn’t expecting those interactions, and they make me feel good in a way that nothing else does.”

Heimer has found that these moments of connection give her a sense of buoyancy that helps counteract the weight depression. She is pursuing her MFA in part so that she can teach part-time and make interacting with others a more regular occurrence. “I realized that I was spending eight hours a day alone in the studio painting. That’s not healthy either,” she says. “I totally love being around art students. It’s another magical thing, being around other people who are making things and learning.”

“I don’t want to be super dramatic and be like, ‘It’s given me something to live for,’” says Heimer of her art. “The pace and the momentum of it, I think, help. I still have medication. I do all the stuff that I’m supposed to. But there’s something about that forward momentum. It doesn’t have to come from a painting career. It can be anything that you care about that propels you forward.”

Profiles

How “The Autistic Academic” Got Her Sci-Fi Writing Groove Back

In both the real world and through the pages of her fiction, Dani Alexis Ryskamp is looking to overthrow people's preconceptions of what it means to be autistic.

When Dani Alexis Ryskamp was nine years old, she read through all of her dad’s old undergraduate psychology textbooks in an effort to figure out what was “wrong” with her. “I knew I was different from other kids the moment I set foot in kindergarten,” Dani told Folks, “and my mother, my teachers, and my peers all made it very clear that ‘different’ was wrong.”

Dani Alexis Ryskamp, posing for an impromptu selfie.

Throughout childhood, Dani had no friends and was viciously bullied at school. She spent most of her time alone, reading fantasy novels, like Madeleine L’Engle’s A Wrinkle in Time quintet and Vonda McIntyre’s Dreamsnake; taking dance lessons; and running around on her mother’s forty-acre farm in rural Barry County, Michigan. Her mother’s advice for dealing with bullies—to be excessively ‘nice’ to them, in hopes that they’d respond in kind—was almost as misguided as her teacher’s: “‘Well, the other kids wouldn’t do this stuff if you’d try to be more like them,’” Dani remembers being told. “But it didn’t seem to matter how hard I tried. There was something they understood that I didn’t.”

All of this left her feeling “crazy, broken, worthless, fucked up.” Panic attacks and dissociative episodes afflicted her regularly. The world felt like a sensory onslaught. Motor function wasn’t always predictable, and she felt helpless in any social situation that didn’t let her rely on a script.  At age seven, she made her first suicide plan.

Dani’s precocious textbook-reading did more harm than good. The 1970s-era, 101-level psychology textbooks “convinced me that what I had was schizophrenia and that the only treatment was to be locked up and loaded down with tranquilizers,” she says. “It became my life’s mission to hide that I was ‘crazy.’”

It didn’t seem to matter how hard I tried. There was something they understood that I didn’t.

In an escapist fifth-grade fantasy, Dani designed her dream house: A four-room log cabin, far away from the world of bullies, where she would spend her days writing science fiction, communicating with her editors and publishers via phone and fax. “I’ve wanted to be a writer ever since I knew where books came from,” Dani says.

But working from home wasn’t yet mainstream in the early 1990s, and so every adult in Dani’s life—except for her dad—dismissed her solitary-writer-in-a-cabin life plan as ridiculous. “By the time I’d left for college, the idea of being a working writer had been pretty well beaten out of me,” Dani says. As a college freshman, she discovered she hated her chosen major—mortuary science—and went on to get a B.A. in English before going to law school (“The same naysayers who talked me out of being a professional writer convinced me there were no jobs to be had with a Ph.D. in English, either”). All the while, she suffered from the same inexplicable sense of being “crazy, broken, worthless, fucked up.” Working in insurance defense left her physically and mentally ill; she burned out after a year.

It wasn’t until 2009, when Dani was 26, that she finally got the answers she’d been seeking as a kid reading her dad’s psychology textbooks. After burning out at the law firm, she visited a psychiatrist. In just a few hours, she was diagnosed with autism.

“In hindsight, I already knew that I was autistic: I’d been dating an autistic man for about six years, and I’d done enough reading that I could see myself in the literature,” Dani says. “The diagnosis came as a massive relief to me. Autism is called ‘pervasive’ for a reason: it affects every thought, every perception, every process. It says a lot about how sick I was at the time, physically and mentally, that I needed a psychiatrist to say the word before I realized that I’d kind of already figured that one out.”

All through her childhood, Dani had assumed she’d grow out of being different: “That I’d wake up one morning and I’d just understand what was going on socially, lights and noises and textures wouldn’t hurt, and my body would do what I wanted it to do whenever I wanted it,” she says. “It wasn’t until my diagnosis that I realized that I wasn’t going to ‘grow out of’ it, and it wasn’t my fault that I couldn’t.”

Not everyone was as relieved by the diagnosis as Dani was, though. “My mother’s response to the news was to say, ‘Do you think I did this to you?’” Dani remembers. “I confess that I laughed at her – by then, my dad and I had already decided I got it from him. (He has not gotten a diagnosis because he doesn’t see the point.)”

It wasn’t until my diagnosis that I realized that I wasn’t going to ‘grow out of’ [autism], and it wasn’t my fault that I couldn’t.

Later, Dani made the painful discovery that she’d been evaluated by a psychiatrist as a two-year-old, because her dad and babysitter had seen early signs of atypical processing—but her mother had buried that information during a rocky divorce from her father. “My mother still hasn’t accepted my diagnosis,” Dani says, “and that drove a wedge between us I doubt she’ll ever be able to mend. Because that diagnosis saved my life, and to hear her continue to treat it and me as a tragedy is heartbreaking.”

Ryskamp edits the Spoon Knife series of anthologies for Autonomous Press.

The diagnosis saved Dani’s life, in part, by paving the way for her transition from a soul-deadening insurance job to pursuing her childhood dream of being a writer. “The most valuable part of being autistic, for me, is that it’s given me an understanding and command of language that I’ve never seen in anyone who wasn’t neurodivergent in some way,” Dani says. “I wouldn’t be as good at what I do, or enjoy it as much, without that ability.”

She immediately enrolled in an M.A. in English at the University of Michigan. There, she met Athena Michaels-Dillon, the Production Coordinator of Autonomous Press, an independent publisher with the tagline “Weird Books for Weird People”: In other words, books about neurodivergence, queerness, and the various ways they can intersect. Titles include The ABCs of Autism Acceptance and The Real Experts: Readings for Parents of Autistic Children.

Autonomous Press seeks to foster better understandings of autism and other forms of neurodivergence, and “to help neurodivergent people find community and an outlet for expression—to continue to establish our voices as real human voices worth listening to, by putting them in print,” Dani says. Because when it comes to societal approaches to neurodivergence, “pretty much everything urgently needs to change. Autistic and neurodivergent people are still searching for crumbs when it comes to basic rights.”

To put things in perspective, when Dani was born, the Americans With Disabilities Act (ADA) and Individuals With Disabilities Education Act (IDEA) didn’t exist. “We’ve gotten only marginally closer to accepting the idea that disabled people have a right to exist in public, even if the laws meant to familiarize us with that idea have no real teeth,” Dani says. “The mere fact of a mental or emotional health diagnosis is enough to jeopardize many people’s jobs, their right to raise their own children, their access to education, and their right to live independently.”

We’ve gotten only marginally closer to accepting the idea that disabled people have a right to exist in public, even if the laws meant to familiarize us with that idea have no real teeth…

In Autonomous Press and its main imprint, NeuroQueer Books, Dani found a group of likeminded people—the publisher’s partnership is currently all autistic—as well as a job that allowed her to use her legal expertise, writing skills, and lived experience as an autistic woman in a world built for neurotypical brains. Now, Dani is the resident attorney at Autonomous Press; her job is about about one-third lawyering and two-thirds editing. She’s co-edited NeuroQueer’s Spoon Knife series, an annual anthology of writing by neurodivergent authors; has a chapter in the upcoming NeuroQueer Handbook; and is currently working with veteran autistic activist Kassiane Sibley to turn her long-running blog into a book.

Dani blogs herself, passionately and prolifically, under the moniker “The Autistic Academic,” about everything from “Emotional Labor, Gender, and the Erasure of Autistic Women” to “The Autistic Adult’s Guide to Getting Hired.” Her work fiercely champions disability rights and debunks insidious myths about autism. Misunderstandings abound, of course; in Dani’s experience, the most common is the notion “that autistic people are somehow tragically unreachable or tragically deprived of the joys of a ‘normal’ human life – that we’re locked in, that we can’t understand other people’s reasoning or emotions, that we have no real feelings about anything around us,” she says. “I have yet to meet a single autistic person who actually experiences any of those things.”

Another pervasive misunderstanding is that autistic people can be categorized as either “high-functioning” or “low-functioning”—reductive terms that Dani finds unhelpful and insensitive. “‘High-functioning,’ of course, is most often taken to mean ‘almost a normal person,’ while ‘low-functioning’ often appears as a synonym for ‘burden’ or ‘tragedy case,’” she says. “Yet every autistic person I know varies wildly in their ‘functioning’ in various areas, even from day to day.  Some of us, myself included, have been described as both high-and low-functioning, sometimes by the same doctor in the same document.”

Autism is a state of constant flux.

Dani, for example, has three college degrees, but she can’t live alone because the steps involved in making food are too difficult for her to follow unassisted. She and husband spend time working out my scripts for various events and tasks before she does them. “Autism is a state of constant flux,” she says. “Describing our personal support needs is far more useful that dismissing us as ‘high-functioning’ or ‘low-functioning.’”

A sci-fi themed selfie: Ryskamp posing in a Star Trek doctor’s uninform.

Later this year, Dani will publish her first science-fiction novel, Nantais. It’s set on a post-apocalyptic earth, all but destroyed by global warming and rapacious overconsumption. The rich have fled for Mars or the Kuiper Belt (on the other side of Neptune), while a few massive, corrupt corporations control the earth’s remaining resources. Disaster strikes on the Jemison, a research vessel working for a corporation called Interstellar Science: The captain’s son has been kidnapped, the computer core is slowly freezing up, and their only hope is an alien woman who has to have her memory wiped if she wants to live.

“I’m wildly excited about it,” Dani says of Nantais. “This is a universe that has existed in my head in some form since about 1992, so I’m thrilled to be able to put it into print.” And so, some two decades after designing her dream cabin, Dani has showed up the naysayers: She works as a solitary writer, communicating with editors, publishers, and other writers remotely, just as she planned as a fifth-grader.

 

Histories

The Colorful Totems Of Saint Frida Kahlo

Frequently housebound throughout her life, the legendary Mexican painter turned to fashion, curios, and knick-knacks to let her imagination travel as far as her art.

Since her death in 1954, Frida Kahlo has become an international cult icon. During her lifetime, the Mexican artist painted a relatively small number of pieces, only around 200, many of them self-portraits. Today, her likeness appears on a ridiculous range of objects — refrigerator magnets, earrings, swimsuits, bead curtains, socks, oven mitts, iPhone cases.

“Frida’s become Saint Frida, and people want to have a little piece of it, so they have to have a little physical ‘thing’ that has her image on it,” Kahlo biographer Hayden Herrera says in a PBS interview. A notorious collector of things, Kahlo likely would have understood her fans’ desire to take home some sort of totem. “I think Frida would have loved it and been amused by it,” says Herrera.

Self-portrait by Frida Kahlo.

As a girl, Kahlo “dreamed of being a navigator and traveler,” but illness and injury kept her housebound off and on throughout her life, sometimes for months on end. At age six, Kahlo was stricken with polio, and the illness stunted the growth of her right leg. Then, when she was 18, a steel handrail skewered her abdomen in a bus accident. The collision left her with multiple fractures in her spine, pelvis, and her right leg; her right foot was crushed. Complications from this trauma plagued her until the end, leading to some 35 surgeries and debilitating pain.

“Because she was immobile, the world came to her,” her art student Fanny Rabel says in Frida, Herrera’s definitive biography. When friends went on trips, she always asked them to bring back a little souvenir for her. “She loved objects and I think they were a connection with the outside world for her when she was more isolated,” Herrera says in a video for the auction house Christie’s.

Kahlo “dreamed of being a navigator and traveler,” but illness and injury kept her housebound off and on throughout her life…

Kahlo adorned herself and her home with an array of beautiful things — from antique rings and pretty pink hair ribbons to giant papier-mâché skeletons and clay skulls. Kahlo’s curatorial impulses are particularly evident at La Casa Azul (the Blue House). Located in Coyoacán, a southern neighborhood of Mexico City, this is the family home where Kahlo grew up and where she spent the last 13 years of her life. After Kahlo and her husband, the legendary muralist Diego Rivera, moved in the couple turned the house into a veritable museum, filling it with thousands of objects, including Mesoamerican sculptures, Mexican folk art, large earthenware pots, hundreds of ex-votos (small devotional paintings on tin), photographs, handmade jewelry, and more than 300 garments. (Happily, Casa Azul is now the Frida Kahlo Museum, and the rooms look much as they did when the pair lived there.)

For Kahlo, her home and her wardrobe were reflections of herself. And because of that close association, both can tell us something of how she dealt with her many maladies.

A wardrobe of armor

One of the most iconic photos of Frida Kahlo shows her in one of her many vivid outfits.

More than just fashion, clothing was a type of armor for Kahlo, and she donned her vibrant native attire to both assert her nationalist identity and to hide her scars and slight limp. In an era of curve-hugging dresses and pin curls, Kahlo’s embroidered blouses, floor-length skirts, and crown of braids attracted attention — and purportedly stopped traffic when she traveled abroad. Today, she is almost as well known for her iconic sense of style as she is for her artwork. The look she favored most was modeled after the traditional garb of Tehuantepec, an area in southeastern Mexico, where the women are “famous for being stately, beautiful, sensuous, intelligent, brave, and strong,” writes Herrera in her in-depth biography.

The biographer believes that Kahlo’s striking outfits also became “an antidote to isolation” as the years passed. “Even at the end of her life, when she was very ill and received few visitors, she dressed every day as if she were preparing for a fiesta,” says Herrera. The vivid colors of her clothing, the flowers she’d thread into her hair (or have her nieces and friends thread when she was too weak), and her heavy pre-Columbian jade necklaces made “the frail, often bedridden woman feel more magnetic and visible, more emphatically present as a physical object in space.”

Even at the end of her life, when she was very ill and received few visitors, she dressed every day as if she were preparing for a fiesta…

As her health declined, Kahlo’s ensembles and accessories became brighter and increasingly elaborate. In 1953, doctors decided to amputate her right leg below the knee. The decision was a devastating one for Kahlo, but even then she sheathed herself in “an elegant Tehuana dress” before heading to the surgeon. Writes Herrera, her self-decoration “was at once an affirmation of her love of life and a signal of her awareness — and defiance — of pain and death.”

Wild at heart

Kahlo’s father encouraged her to share his curiosity in all things organic — flowers, animals, birds, insects. When she was a child, the two would spend hours at nearby parks, the elder Kahlo painting watercolors while his daughter collected pebbles, insects, and plants. This relationship with the natural environment nurtured and sustained Kahlo later in life as well.

Casa Azul was built around a central courtyard where Kahlo and Diego cultivated a vast botanical collection, including orange and apricot trees, magnolias, gardenias, dahlias, bougainvillea, agave, cactus, and prickly pear.

Frida Kahlo and her pet monkey.

The garden is also where Kahlo’s cherished menagerie roamed, among them her spider monkey Fulang-Chang and a fawn called Granizo. One of her favorite pets was a little parrot named Bonito, who would nuzzle under the blankets with her when she rested in bed. Bonito’s preferred treat was butter. For comic relief, Kahlo would set up obstacle courses of clay pots and bowls for the bird to make his “pigeon-toed way around” before delving into his “buttery reward.”

When she was confined to her home, connecting with nature through her plants and her pets became increasingly important. She would stroll around the garden paths “noticing with loving attention each little flower as it came into bloom, playing with her pack of bald Aztec dogs [Mexican hairless Xoloitzcuintles], holding out her hand as a perch for tame doves or for her pet eagle (an osprey), which she named Gertrude Caca Blanca [Gertrude White Shit], because the bird dropped white excrement all over the steps,” says Herrera.

Skeletons not in the closet

Kahlo regularly turned to humor to help her survive life’s arrows. She believed that “suffering — and death — is inevitable,” and “since we each carry the burden of our fate, we must try to make light of it,” says Herrera. She often referred to death by the common Mexican euphemism of “la pelona,” or baldy. And Herrera writes that she “poked fun at la pelona the way a Catholic laughs at Catholicism or a Jew makes Jewish jokes — because death was her companion, her kin.” Or as Kahlo liked to say, “I tease and laugh at death, so that it won’t get the better of me.”

I tease and laugh at death, so that it won’t get the better of me…

The artist revealed her gallows humor in her paintings — which she insisted were full of comedy for those clever enough to spot it — and in her home decor.

Like many Mexicans, she delighted in Dia de los Muertos (Day of the Dead) celebrations, but her love of the holiday extended throughout the year. Along with indigenous pottery and traditional cookware, the walls of her cheerful yellow kitchen were covered with sugar and clay skulls.

Kahlo shows off one of her many skulls.

She also had a penchant for collecting giant papier-mâché Judas figures. Typically used in festivities on the Saturday before Easter, these effigies take many shapes. Kahlo, however, was particularly fond of the skeletons, and she hung the brightly painted paper bones (some nearly 20 feet tall) throughout her house. One of her favorites, which Diego called her boyfriend, rested on top of her bed’s wooden canopy, and smaller skeletons sometimes hung from its edge. For a party later in her life, she dressed a coterie of these playfully ghoulish characters in her own clothes and had them hung from her bedroom rafters.

A room of her own

Due to complications from polio and other injuries, Kahlo spent time bed-ridden off and on throughout her life.

Not surprisingly, Kahlo’s second-floor bedroom reflected the artist’s inner workings more than any other room. To keep herself company during her many bedridden days, she pasted pictures of family and friends to her headboard, and she painted the names of five of her closest friends in pink on her bedroom wall. A pillow embroidered with the words “Do not forget me, my love” served as a talisman against her deep fear of being neglected.

In a cabinet and a dressing table, she assembled a collection of little things — dolls, dollhouse furniture, toys, miniature glass animals, Mesoamerican idols, jewelry, and assorted baskets and boxes. “She loved to arrange and rearrange them, and she used to say, ‘I’m going to be a little old woman and go around my house fixing up my things,’” writes Herrera.

Kahlo treasured presents, and she tore into them with childlike exuberance. Just as eagerly, she would give things away. She was known to impulsively take off rings and offer them to friends. “If receiving gifts was a way of bringing the world to her, giving was a way of extending herself out into it, and of confirming her relation to other people,” writes Herrera.

I very much love things, life, people…

As her health worsened, Kahlo’s attachment to material things intensified. “Abhorring solitude, as if having no one there or nothing to do would leave a void into which terror would flow, she clung to her connection with the world,” writes Herrera. “I very much love things, life, people,” Kahlo told a friend in 1953.

When she was hospitalized for a year in 1950, Kahlo brought parts of her idiosyncratic collection with her. She decorated the room with sugar skulls (a popular Day of the Day item), a colorful candelabra shaped like the tree of life, white wax-and-paper doves that symbolized peace, and the Russian flag. The decorations surely made the room more welcoming and it was also always full of visitors sharing spicy gossip and dirty jokes. “She did not concentrate on herself,” remembers Rabel. “One did not feel her miseries and conflicts when one was with her. She was full of interest in others and the outside world.”

A ripe life

Kahlo has often been described as a surrealist painter, a label she vehemently rejected. “I never paint dreams or nightmares,” she said. “I paint my own reality.” That reality was frequently shot with pain, but it also flowed with an enduring love of life. She passionately engaged with the world and pulled it close to her. She reveled in the real, in the tangible. And, like religious relics, her cherished objects were imbued with meaning. They were symbols of the people she loved, her political beliefs, and her laughing defiance of death. They were also her way of proclaiming that she was still here. Just eight days before she died, the 47-year-old artist picked up her paintbrush and channeled this spirit into into a still life of juicy red watermelons. In capital letters, she wrote “Viva La Vida” (Long Live Life) across the center slice. Tenacious in all things, Kahlo celebrated life to the end. “It is not worthwhile,” she once said, “to leave this world without having had a little fun in life.”

Essays

How The Beatles Helped Me Survive Brain Cancer

When you're getting your brain tumor blasted with protons, a masterpiece like the White Album goes a long way towards helping you keep your sanity.

The Beatles 1968’s double-disc record The Beatles (otherwise known affectionately as “The White Album”) has always been one of my all time favorites. But it wasn’t until I got brain cancer that I truly learned to appreciate it, and to understand some of its deeper truths.

For six weeks, I was locked down into a proton therapy machine for 45 minutes at a time, as millions of invisible particles bombarded my brain, trying to burn out the malignant tumor that was growing inside. It may be slightly hyperbolic coming from a music geek like me, but if not for The White Album, I might never have survived that time.

An original vinyl copy of The White Album.

When I was diagnosed with cancer, I had no knowledge of what proton therapy was, or what it entailed. As I was introduced to the treatment, my doctor described the process. It sounded relatively easy, burning out malignant tumor growth in the center of my brain. I joked with him: “So you’re going to shoot lasers into my head?”

“No,” he replied, deadpan-serious. “Proton beams are NOT lasers.”

“Will this be anything like the MRI machine?” I asked. I’d already had a dozen or more MRIs validating the shape and size of my tumor, so I already knew what the experience was like: the claustrophobic feeling of being trapped in that tiny tube, enveloped by blood-curdling blasts of big robotic rumbling. As a professional music critic, I found it especially discordant: an MRI test is the antithesis of music. Luckily they give you earplugs.

“No,” he told me. “You won’t hear a thing.”

But, luckily, that wasn’t true.

Bird’s eye view of getting your brain tumor blasted by protons.

When I disrobed and entered the proton room for the first time, the ambience was forbidding. It was a large space with a high ceiling, and the room was chilly as I lay down on the table. They fitted me with a custom-built hard plastic mask; it fit nugly to my face, assuring that the proton beam could direct its blast to the precise spot of my tumor. Once I lay down, the mask was clipped to the table, locking me–and my head–in place.

“Do you like music? We have a few CDs over here if you’d like to listen to something while we go through our business setting up,” the nurse asked me.

I get asked about music a lot, but I’m always hesitant to make suggestions. I feel like my brain is so full of music that I can barely pick out one or two songs without worrying that the whole piñata will explode.

Keep it simple, man, I told myself. “Do you have The Beatles?”

“Ah, we do! The White Album, does that work?”

“Oh my god, that’s amazing. Yes, please.”

A blessing from the universe. Everything about The White Album has fascinated me, ever since I first heard it. It represents an epochal moment in music history.

The year is 1968. The Beatles were splintering. After a couple months spent hanging out in Rishikesh, India with Maharishi Mahesh Yogi and smoking plenty of grass, The Beatles had written some of the best pop songs ever. But a different kind of cancer than my own had found root in the band. Experts differ on what it was: was it John and Yoko’s relationship? Was it Paul’s perfectionism? Was it Ringo’s feeling disrespected, or George’s deep dive into Hinduism?

Whatever it was, by the time they came together to complete one of their last original albums, they could barely be in the same room together. The record is entirely built piece by piece, like slowly healing scars.  Each song demonstrated the strength of the writer, but revealed how distant these individual band members had become from the group. Once complete, the work became one of the last records they’d ever make together.

The only thing that stopped me from dancing was the fact that I was locked to the table, getting my brain blasted with protons.

Despite the tumult, it just worked. And that record kept me sane, seeming to reflect my own experience of being treated for cancer in a space oddly melodic in its own discord.

Paul’s tongue-in-cheek rocker “Back in the USSR” starts with the sound of a jet plane taking off. It was an energetic  launch pad for my radiation room, but I found the humor in it: it always gave me a smile. The only thing that stopped me from dancing was the fact that I was locked to the table, getting my brain blasted with protons.

But that’s just the blast-off. Part of what defines The White Album is its melancholy edge. Although the tracks first seem saccharine sweet, each song has an undercurrent of pain, weeping, and need.

The only truly silly song, “Ob-La-Di, Ob-La-Da”, may have been a cute track, but it caused tumult within the band. Everyone hated it but Paul. But that song is quickly balanced out by the powerhouse of “While My Guitar Gently Weeps,” where George’s breath itself sounds like it hurts.

From there, we lead directly into “Happiness is a Warm Gun.” That’s what this album is to me: the happiness of a warm gun. Each and every song has a trigger: my nerves tingle, my body couldn’t move.

Rocking out on the therapy table.

“Martha My Dear” sings: When you find yourself in the thick of it. Just like I’m in the thick of it now.

I read “I’m So Tired” as a cancer song. I don’t know what to do. My mind is set on you? I’d give you everything I’ve got for a piece of mind. And forgiving the pun, do I hear that: I’d give anything for some piece of mind after all this.

So even though I’ve heard the White Album a thousand times, and will probably hear it a thousand more, I never really heard it like I did then. Every time I left the treatment room, I felt rejuvenated: the war on my cancer, the power of science and my own body, all melting away into the audiophonic bliss of an album that sometimes felt like it had been written just for what I was going through.

Not going to lie. Some days I felt the willingness to allow despair to win. Some moments I didn’t want to go to treatment at all. I went day in and day out for weeks. It was a tough time where my heart was constantly racing, and I was battling doubt at every moment. But music puts hope around me… and, more specifically, the White Album does it for me, maybe more than any other. And if I had to explain why, I’d say it’s because it’s an album that prays for you.

Music puts hope around me… and, more specifically, the White Album does it for me. It’s an album that prays for you.

Since the White Album is 93 minutes long, and my proton beams sessions only half that, the last song I heard every session was “Blackbird.” It’s a deeply peaceful track, where the titular blackbird chirps in the background, while Paul sings a haunting coda:

Blackbird singing in the dead of night

Take these broken wings and learn to fly

All your life

You were only waiting for this moment to arise

You were only waiting for this moment to arise

You were only waiting for this moment to arise

Now, my kids are asleep, and I’m listening to the record on my headphones, thinking about my treatment. The whole experience feels so distant, like it was all a dream or a strange piece of performance art. Perhaps when the White Album was put together, the band brought back bittersweet moments for them, too.

The Beatles playing together for the last time.

But the music of the White Album transcends The Beatles’ in-fighting, just like it transcends cancer and proton beams. It’s not about the regrets of the past, or the fears of the future. It’s just a moment, piercing into right now, whether that now is in your headphones or strapped to a table while protons get shot into your brain.

Later, when they played their last performance standing on a London rooftop, the end happened but then the “you” was the listener, us! We took that music and translated it into something beyond words, beyond The Beatles, beyond proton beams, beyond cancer. It’s just a moment, piercing into the now.

The way music is supposed to be.

Right now.

Essays

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.