With the help of family, friends and advanced technology, Tucker Stilley produces fine art despite a life-threatening illness that has left him paralyzed.
By Tariq Kamal 10/17/2013
Tucker Stilley, a fine artist, musician and fourth-generation Pasadena-area resident, resides in the lower front room of a two-story home in San Marino. There he creates digital artwork one critic described as “a restless inquiry into the nature of existence.” Indeed, Stilley’s existence is one to provoke deep existential questions others might skip by. That’s because in 2005, at the age of 43, he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
The disease is, for most patients, a death sentence. The progression of symptoms typically includes numbness in the limbs, followed by loss of sensation and motor function and, eventually, the inability to breathe, speak or swallow on one’s own. But Stilley has beaten the odds and survived well beyond the average two-to-five-year life expectancy for newly diagnosed ALS patients. And despite the fact that he is now almost completely paralyzed, he continues to create stunning images on a daily basis. “I knew that, in order to work, I would have to stay ahead of the progression,” Stilley writes to a visitor. (Since undergoing a tracheotomy in 2011, he can “speak” only with the aid of a computer-generated voice.) “That required careful planning. They tell you very dire things in the doctor’s office — which are all true — but if you’re pragmatic, bullheaded and happen to have an outstanding team working with you, it’s amazing what you can do.”
His team includes his wife, Lindsay Mofford, an accomplished film editor, and their 13-year-old daughter, Juno. The couple met as teenagers and have been together ever since. His parents, Hugh and Cynthia, and younger brother, Phillip, have joined them in San Marino in recent years. They’re among the family, friends and fellow artists and musicians who keep Stilley company and attend to his medical equipment.
The easiest way to have a one-on-one conversation with Stilley is to lie in the hospital bed set up next to his, ask questions and wait as he types his answers. He is able to do so, thanks to cutting-edge technology that works by sensing the location of a reflective dot affixed to Stilley’s forehead and tracking his eye movements. A monitor is suspended over his bed on a rig that looks like it was built for a movie set. The pace of conversation is refreshingly slow and the guest bed is comfortable — perhaps too comfortable. “We have a whole series of photos where people have fallen asleep in that bed,” Mofford says, laughing. “They’re knocked out and Tucker is just smiling.”
With quick, practiced head and eye movements, Stilley can aim at and click buttons on an alphanumeric keyboard. He can then exit to a home screen that allows him to select programs for making artwork and music, surf the Internet and much more. The rig, like the software, wasn’t built all at once. “I knew the day would come when I could only move my eyes, so I was researching that far in advance,” he writes. “I chose the system that had the best hardware performance, and we modified the software to meet my needs.”
The eye-tracking solution was developed by a Dutch company, AssistiveWare. Mofford’s film assistant built a PC to run the software and a tech from Pasadena’s Di-No Computers helped connect it to Stilley’s Macintosh. Michael Grover, a friend and software developer, helps maintain the PC/Mac combo Stilley calls a “terrifying, two-headed monster.” Donations from the artistic community covered the $7,000 cost of the equipment. At the time, the expense paled in comparison to Stilley’s medical bills, which peaked at $10,000 per month. Mofford organized countless fundraising drives and lobbied Medicare officials to acknowledge that it was cheaper for Stilley to live at home than in a nursing facility. They relented, and his healthcare costs were significantly reduced.
More important, he was able to continue working. In fact, he’s prolific.
Randi Malkin Steinberger, a Santa Monica–based fine-art photographer and documentary filmmaker, and her husband, Harlan Steinberger, have been friends with Stilley and Mofford since the ’80s. The two couples were collaborating on a film project when Stilley was diagnosed with ALS. Although she says she was devastated by the news, Randi never doubted he would persevere. “There are a lot of reasons he wants to keep going,” she says, “but, beyond his family, it’s his art that gives him the satisfaction of adding something to the world.”
One of Stilley’s collections was inspired by the Occupy movement, which began in September 2011. He ignored traditional press coverage and sent out a “spider,” a software application that automatically browses and indexes information stored on the Internet, to collect images he could use in his artwork. He set specific parameters — date, file type and orientation — and collected 300 pictures every two days. Stilley says he selected a few images every day and painted over them with a series of “brushes” he designed. “So it would pick an image, randomize my brushes and composite settings by, say, 20 percent, paint the picture — whether in a very painterly style or a self-matting video glitch or some weird thing in between — and then pick another image, re-randomize and start over-painting. So everything you see is a palimpsest of insanely random stuff.”
The result was “Occupy_Online,” a collection of work that defies categorization. Some images are clearly computer-generated; others look like traditional paintings. But each is visually arresting in its own way. As with other works, he creates prints with the help of his brother, Phillip, whom he has nicknamed “Art-Bot.” “Art-Bot prints them for me on a high-end printer; then we have a parade of prints and I make notes,” Stilley explains. “I don’t think of myself as picky about details, but I’m wrong. If the print is off in some microscopic way, I may throw it back as many as five times. Art-Bot has a hard time concealing his annoyance.”
Stilley is also planning a series of Pasadena cityscapes he hopes will reflect the area’s changing face. A longtime resident, he has witnessed the building and eventual demolition of the Plaza Pasadena mall, the revitalization of Old Pasadena and the proliferation of high-rise condos and office buildings. He plans to send Phillip out to photograph places where the old and new are juxtaposed. “I don’t actually judge these things because it all smells so temporary, so I want to paint one layer down,” he writes. “The ’70s are ideal because it’s so alien now, but you know these cities just get built on top of each other, like Pompeii or something. So, yeah, Art-Bot has a mission.”
Many of the common pitfalls inherent in artistic pursuits — including distraction, indecision and procrastination — are unavailable to Stilley. Mofford believes that Stilley’s challenges have actually enhanced his artwork, by forcing him to achieve a sharper focus. “Because he can only move his eyes, all his energy goes into his mind,” she says. “It has become more powerful than ever.” Steinberger agrees, noting that much of his current work is emotionally inscrutable, even to the trained eye. “Sometimes I just relate to the aesthetic beauty,” she says. “I don’t feel like I understand where he’s starting from and what he’s trying to say and do. I don’t know if anyone could.” Even his wife can be confounded by new pieces, although Mofford says she can decode Stilley’s emotional state “to a certain degree.” “He has a complex mind, always going deeper and deeper… I’m constantly surprised at the new emotions and new ways he’s going.”
Stilley’s fellow artists have helped keep him involved in the Pasadena art scene. They set up a tent to display his work at last year’s ArtWalk and have installed shows at galleries and other venues. “When I make giant collages, installations and hanging shows, I have a rotating team of people who patiently decode my instructions and notes — very detailed, many iterations,” he writes. “These people are all tremendous artists in their own fields, so I’m honored. Without their help I would be locked out of the physical world entirely.”
Mofford says he attracts support because of his indomitable spirit. “He inspires people by the fact that he has taken this diagnosis and, instead of letting it beat him, he uses it as a tool,” she says. “I think people have also been inspired by us and our love and support. But the fact that Tucker has had a lot of pretty outstanding people want to help him is inspired by the art itself.” Multimedia artist Sam Durant, for example, curated his 2009 show at L.A.’s Monte Vista Projects, declared “extraordinary” by the Los Angeles Times.
He is able to attend shows, when the gallery can support it, via teleconference. “That’s really fun, and I always make more art from my webcam stills; since I can pan around and zoom, it’s like my own photo shoot,” he says. “Interacting with the gallery-goers is invariably an amazing experience. They’re fascinated by me, and I by them.”
Stilley says that although he’d always planned to continue working, his diagnosis forced him to think in terms of creating a cohesive body of work. Much of it, including “Occupy_Online,” is now catalogued at tuckerstilley.com, where visitors can peruse the artist’s collections, learn more about the images and find links to critics’ reviews.
Asked whether his work should be judged at face value or in the context of his medical condition, Stilley says that, like any work of art, each piece must ultimately speak for itself. “The poor little things have to fend for themselves, and I work hard to make sure they will thrive, but then they’re on their own in the world of images,” he writes. “However, I’d be lying if I said they didn’t get a boost or spin from the context of my paralysis. But that’s only natural and part of their odd provenance.”