When the image is not the disease
Exhibit at the List Visual Arts Center takes a magnifying glass to the metaphors of multiple sclerosis
Inside the Hayden Gallery at the MIT List Visual Arts Center, a fragmented diaspora of LEGO robots is creaking in unison. Each robot carries an iPhone, waving the phone back and forth to increment the step count on a health-tracking app.
When companies started providing cheaper insurance to those who walk a certain number of steps, some people with chronic illnesses turned to assembling robots like these to afford the care they need. The robots, collectively entitled Lego Pedometer Cheating Machines (2019), are a part of Flare-Up, an exhibit at the List by artistic duo Simon Goldin and Jakob Senneby (Goldin+Senneby) that explores the divide between the precise facts of medicine and the spiraling reality of human illness. Open at the List until March 15, 2026, Flare-Up pulls from a range of modern and historical portrayals of sickness to describe Senneby’s experiences as a patient suffering from multiple sclerosis (MS), a neurodegenerative disease.
White spots
On Jan. 20, 2000, a singular picture changed Jakob Senneby’s life.
The picture – a Machine Resonance Imaging (MRI) scan of Senneby’s brain – featured white spots characteristic of MS. It was enough for his doctor to diagnose him with the disease.
Senneby quit his job a few months later and enrolled in art school, where he partnered with classmate Simon Goldin to form Goldin+Senneby. As Senneby’s conditioned progressed, their practice shifted to focus more on his feeling of living in “two incompatible realms: that of medicine, where bodies were measured and manipulated with incredible precision, and that of [Senneby’s] own experience, where numbers refuse to add up and limbs fail to process commands.”
Historically, doctors have characterized MS by the lesions it leaves on the nervous system, which show up as white spots in MRI scans. When the first MS treatment, Betaseron, was undergoing clinical trials in 1993, scientists chose to measure the drug’s success by counting the lesions. The white spots became what scholars refer to as a “surrogate endpoint,” said Thea Applebaum Licht, a PhD student at MIT who studies the history and economy of the U.S. pharmaceutical industry.
Patients taking Betaseron during the 1993 clinical trial developed fewer and smaller spots than patients treated with a placebo. The FDA “accepted the image as the disease, and approved the drug to treat it,” Senneby said.
15 years later, leading MS researcher George Ebers organized a follow-up study on the original patients, but couldn’t find evidence that the MRI scans predicted disability progression. Betaseron continued to be sold as an MS treatment, and is now 10 times more expensive than it was in 1993.
“Drugs are developed on a lot of endpoints that are of mixed quality, and you need to keep validating them,” Licht explained. Subsequent studies have found some correlation between brain lesions and disease severity, but researchers are still debating the extent to which MRI images should influence treatment.
Though he was initially told to take Betaseron, Senneby’s doctors later switched his prescription to newer drugs. With each new medication came new scans. “Increasingly, my feeling was that all the doctors could find were the spots they had out to see: the image of their own diagnosis,” he said.
Making images of their own
Senneby’s MS has taken away his cognitive capacity to speak freely and coherently, but creating art with Goldin has allowed him to continue sharing his ideas. Flare-Up is the artists’ latest attempt to expose viewers to the suffering missing from clinical descriptions of MS.
Their Swallowimage series (2025) explores the emotional risk of starting a new treatment. The name is a direct translation of Schluckbildchen, the German word for tiny portraits of saints that 18th- to 20th-century religious pilgrims would swallow in hopes of curing their illnesses.
Each piece in Swallowimage consists of a historic oil painting of health, death, or sickness, the canvas reversed and inoculated with the fungus Isaria sinclairii — the source of an active ingredient in the MS drug Gilenya. Though Isaria sinclairii is mythologized as an elixir of eternal youth in traditional Chinese medicine, it’s a deadly parasite to cicadas, eating away until it blooms out of its host’s head.
This dichotomy of Isaria sinclairii reflects patients’ lack of control over the possible outcomes of a new treatment. “It is often said that you become what you eat,” the artists wrote. “But as you swallow the pill, you are unsure if you are becoming more like the fungi of eternal youth, or indeed, the cicada whose head is about to sprout.”
The artists’ blockchain-based artwork, Spot Price (2023), gives viewers an expensive look at the scans that have defined Senneby’s illness. In order for it to be visible, each scan needs to be minted for $7,000 to $10,000, an amount that is “pegged to the monthly cost of certain medications I’ve been on,” Senneby said.
“Given the inexorable rise in prices and the decisive role of the white spots in validating drugs, the spots pictured in Spot Price (2023) may be the Seller’s most valuable asset,” the caption stated.
At the exhibit’s opening lecture, the artists distributed their own swallow images, which were chocolates imprinted with a QR code linking to Spot Price. Unlike Senneby, whose deteriorating health forces him to pay thousands of dollars for drugs that provide little long-term improvement, the audience was given a choice: investigate the QR code, or, like the religious pilgrims, swallow blindly.
“Epilogue,” Goldin announced. “Eat your image, before your image eats you.”