Painting Helps Artist Lydia Emily Deal With the Pain and Suffering of MS

Tremors and vision loss may slow her down, but ‘MS isn’t going to make me not show up for my life.’

Lydia Emily
The artist Lydia Emily poses in front of one of her murals depicting hope. Photo Courtesy of Lydia Emily

Over the course of her career, the painter and muralist has literally scaled walls for her craft. So when she learned of her secondary-progressive multiple sclerosis (SPMS) diagnosis in 2013, it would have been understandable if she had packed up her brush and palette for good.

Except giving up is simply not in her nature.

“After I was diagnosed, I thought, ‘I’m going to do my work no matter what,” she says. “When I started having tremors in my hands, I started strapping my paintbrushes to my wrists so that they would remain stable. When I started to lose sight in my eye, and had trouble with seeing depth and perception in my work, I’d call someone into the studio and say, ‘How does this look?’ I try to make accommodations for everything MS throws at me. That’s how I’ve lived my life since my diagnosis.”

Such resilience in her battle against what, for her, is a progressive condition has not only allowed Lydia Emily to continue painting, but also to use her art to depict the challenges people with MS face every day — and how they work to overcome them.

Indeed, she sees part of her role as an artist “who happens to have MS” as “changing the face” of the condition.

“MS affects people who have it differently,” she explains. “We’re not all in wheelchairs. Are some of us experiencing pain or difficulty walking? Absolutely. But we’re out there living. The message I have for people when I speak about MS, or with my art, is, ‘MS isn’t going to make me not show up for my life.’ And it shouldn’t do that for anyone.”

Lydia Emily’s murals
Some of Lydia Emily’s murals take up the entire side of a building.Photo Courtesy of Lydia Emily

From ‘Awesome’ Shoulder Pain and a Numb Tongue to an MS Diagnosis

Lydia Emily had just come out of a two-year battle with clear-cell carcinoma — believed to be caused by exposure to diethylstilbestrol, or synthetic estrogen, in utero — when she got more news that would change her life.

“I had just finished chemotherapy and I was pronounced cancer-free,” she recalls.

Ever the workaholic, she traveled to northern California from her home in Los Angeles to start a mural project on a freeway in the Bay Area. When she reached up to pull down a ladder that would enable her to climb up on a road sign support structure to begin work, she felt a “tear” in her shoulder.

“People use the word ‘awesome’ incorrectly all the time,” she explains, with a chuckle. “Like, ‘This is awesome,’ meaning great. That’s not what it means. In this case, my pain was truly awesome. I was on my couch for a year, an inordinate amount of time for the injury I had sustained.”

When she woke up one morning and experienced numbness in her tongue, she thought she was having a stroke and immediately went to the emergency room. An MRI there revealed MS lesions on her brain and spinal cord.

From there, Lydia Emily’s MS symptoms progressed rapidly. She’s lost most of the vision in her left eye — she wears an eye patch — and walks with a cane because of pain in her lower back and muscle weakness in her legs. She also admits to suffering from memory loss relating to her MS.

“I’m a terrible driver,” she jokes. “The other day I drove my poor husband to the airport and got lost, like, seven times.”

Still, the condition hasn’t slowed her down. If anything, just the opposite.

Painting Messages of Hope as an MS Ambassador

In addition to having an “amazing” husband, Lydia Emily is mother to two teenage daughters, Dorothy, 18, and Coco, 16, the latter of whom has autism and “requires 24-hour care,” according to the artist.

“Being able to care for her has been a gift,” the 48-year-old says. “I’ve learned that it feels good to help others, and her strength inspires me to be strong for her. I’ve become a much more patient and tolerant person.”

And, she adds, a better artist. Since her diagnosis, Lydia Emily has painted multiple murals offering messages of hope for people with MS, according to an article published in My 2015 in Insider Louisville.

It’s this work that has led her to become an “ambassador” for the National Multiple Sclerosis Society, or one of the many personalities who use their name recognition to raise awareness and funds “for the MS movement.”

Since 2019, Lydia Emily has also served as creative director for the MS On My Mind awareness campaign sponsored by pharmaceutical company EMD Serono, maker of two MS disease-modifying drugs. The campaign seeks input from individuals on the effects of living with MS, which may be used as inspiration for artworks by Lydia Emily.

Speaking Out About Human Trafficking and More Through Visual Art

Plus, she continues to tackle other vitally important subjects as well. As a survivor of rape herself, human trafficking — particularly of young women forced into sex work — has long been an issue of significance for her, and calling attention to victims’ suffering, as well advocating for their rights, has been a constant theme of much of her work as an artist.

She is currently working on two books. One will be a collection of her art, while the other will focus on her battle with MS and offer advice for others living with multiple sclerosis.

“Visual artists do have a platform where we can be outspoken, while the public tends to react negatively when an actor or singer speaks out,” she says. “I always say, ‘Art can do more than just hang. It can help.’ I don’t show all of the paintings I do about my MS to the public, because I feel like the ones about pain and suffering might be difficult for some people to see. But painting them has helped me deal with those things. I feel lucky to be a painter. It keeps me fighting every day.”