By Kate Johnson
Special to UM News
Visitors to the University of Miami’s medical campus can gain unique insights into the complexities of living with multiple sclerosis (MS) in the MS waiting room in the Miller School of Medicine’s Neurology Clinic at the Professional Arts Center, where Facing Uncertainty is on display through May 31.
The multimedia art installation by artist Elizabeth Jameson, in collaboration with photographer Richard Bermack, includes the portraits of six people who have been diagnosed with MS, including Jameson, and their personal quotes about living with the uncertainty of the illness.
“I do not want to live smaller as a result of my diagnosis,” says Jessica, 29, who was diagnosed with relapsing remitting multiple sclerosis when she was 26. “I have had to adjust. There is no choice in that but to do it. But I am not going to let go of my goals, passions, and vision that I am actualizing. The bad days are rough, but the good days, they shine brighter than the sun.”
In the quote under her portrait, Jameson, who is now quadriplegic, said she is trying to find purpose in a life consumed by a chronic illness. “You want to love your life, but you can also hate your life. It’s impossible not to feel overwhelmed. As an artist, I’m forced to redefine my profession each time my disease progresses. I would be a fool if I didn’t admit that I’m terrified of what MS has in store for me next.”
Facing Uncertainty, which began as an online photography project but has evolved into the campaign #FacingUncertainty, is now part of Art MD, a nonprofit organization that seeks to promote health campaigns through the use of art.
“The main objective of Art MD is to bridge the gap between art and science,” says Art MD’s president and cofounder, Zeina Hannoush, assistant professor in the Miller School’s Department of Endocrinology, Diabetes and Metabolism, who previously worked with Jameson on “The Art of Health,” which debuted during the 2016 Art Basel week.
Art, Hannoush says, provides the perfect medium to inform the community about serious and often preventable health risks and diseases. “Art is magnificent, has no barriers, and can inspire people,” she explains.
Catherine Monahon, Jameson’s studio assistant, describes the difficulties of installing art in patient waiting rooms, noting that “in a lot of clinical spaces you can’t even thumbtack a poster up.”
In turn, Hannoush had to navigate many layers of bureaucracy and red tape to bring the installation to UM’s Neurology Clinic. “It touches on the important topic of dealing with chronic diseases,” she says.
At the UM Neurology Clinic, the portraits hang in the hallway, accompanied by plaques with each participant’s quote, which, tailored to Miami’s audience, are printed in both English and Spanish. The portraits are dynamic and thought-provoking. They catch your eye as you walk down the hallway and inspire curiosity, making you want to read more and take a deeper look into the art. If you look closely at the bottom of each portrait, the participant’s signature is visible.
You’ll also notice the people living with MS are diverse—young and old, black and white, gay and straight—because, Monahon says, Jameson wanted people to know MS is diverse.
But the main goal of Facing Uncertainty, Monahon says, is to “get people talking about their experience. Breaking that silence and breaking the taboo of talking about illness and disability and building community as well.”
Another goal is to turn the “wasted time” spent in waiting rooms into something productive. Typically, Monahon notes, waiting rooms have pictures of puppies and trees, which made Jameson feel, “kind of infantilized, like this is a waste of time.” Instead, Jameson sought to create a space where people would be “seeing one another, acknowledging their own experience, and feeling empowered.”
Jameson began Facing Uncertainty, Hannoush says, when she “started making artistic representations of her own MRIs. They frightened her, so she started painting over them to make them artistic.”
The artwork of her MRIs, which can be viewed on the Facing Uncertainty website, evolved into the idea to use art to start a conversation about MS. Now others can reach Jameson personally and others from the website, creating a support network for those affected by the disease.
“One thing I want the world to know about MS is that the disease of MS is one giant compromise after another . . . one loss after another . . .,” Jameson wrote in an email.
The other participants have their own unique take on the illness, and their goals for the future, but they all have a common thread that connects each story: Living with MS is living with uncertainty, but that cannot stop you from living, which Jameson has proven with Facing Uncertainty.
Visitors may view the exhibit at the UM Neurology Clinic at 1150 N.W. 14 Street, Suite 609, Miami, FL 33136.