Right after she turned 13 years old, May Ling Kopecky said she felt an electric sensation down her spine when she bent her head forward. Doctors at the time couldn't explain why. A couple weeks later, the buzzing went away.
Soon, other symptoms started to pop up. Doctors could see involuntary convulsions in her torso.
At 15, Kopecky was diagnosed with rare pediatric-onset multiple sclerosis (MS). After years of uncertainty, just having a diagnosis brought a rush of relief.
For the Kopecky family of Plymouth, this began Kopecky's journey with an "invisible illness." Now 27 and still living in Plymouth, her MS symptoms rear up unexpectedly. A sudden brain fog means she has trouble communicating, or a muscle weakness makes it difficult to walk.
Kopecky is resilient and passionate, say those who know her, an advocate for those with disabilities and an award-winning artist.
Art has been "something that has been very therapeutic," Kopecky said. "But also one of the things that I just most genuinely enjoy, because it's another form of language as well. You know, especially with these MS symptoms ... sometimes it can be difficult to describe things with words."
Mayo Clinic's Dr. Jan-Mendelt Tillema has known Kopecky since she was diagnosed.
"I think that's where no matter how good or bad you are with art... [it] can be incredibly helpful. And then if you're as talented as May Ling is, then it really becomes something you can share with others," Tillema said.
Her artwork is now part of a traveling exhibit chosen from a Kennedy Center competition for artists with disabilities.
She is 'going to be an artist someday'
As a teenager with MS, Kopecky started to drift away from friends because she couldn't go to school in person. She also dropped her Advance Placement courses when balancing symptoms and an intense course load became difficult.
Some would question Kopecky's symptoms because they often were not visible. As a student at the University of Minnesota, some professors would ask why she needed academic accommodations. She could only physically handle taking classes part-time. She earned her bachelor's of fine arts degree after six years.
"Looking back, I wish I could tell myself, you know, everything's gonna be OK. But at the time, it was kind of difficult to think that way," Kopecky said.
Since she was a kid, Kopecky remembers how much she loved to create art. Her parents would say that she could be entertained with a pencil and paper. Kopecky had her first art class at age 5. Kris Mastley Holtmeyer, her first art teacher, saw Kopecky's potential and told her parents, "May Ling is going to be artist someday."
Kopecky still stays in touch with Holtmeyer and helped to teach art classes as well.
"May Ling is almost like a daughter to me, she really is. She's got such a kind-hearted personality. She's very compassionate" Holtmeyer said.
Early on, her art focused on her travels and experiences of being biracial. In reflecting on her work, she said something clicked to change her focus to MS.
"This is something I have a lot to say about because it's been a part of my life for so long now, and I feel like people, when they look at me, they don't really understand what I'm going through," she said.
Kopecky posted her artwork on Instagram. In one post she painted MRI scans of her brain to show "clinical proof" of MS.
She wanted illustrate what her symptoms felt like, showing her experiences and struggles so others could understand. Her posts connected her to a community that she didn't have before, especially with younger people.
"I've had a lot of people say that my artwork, especially my artwork about MS symptoms, has validated their experiences and made them feel seen, which was something that I did not have when I was that age," she said.
In 2021, Kopecky entered a national Emerging Young Artists Competition for young people with disabilities. She submitted two pieces: "Double Vision," a painting showing her arm with an IV, and "Welcome Back," a painting of a hospital room.
Kopecky placed second, and her art is now going to be part of a national tour. She and other recognized artists went to a reception in Washington, D.C., in June and met with Minnesota Sens. Amy Klobuchar and Tina Smith.
Kopecky works as a learning specialist at the Minneapolis College of Art and Design in the Learning Center and Accessibility Services department.
"I was on the receiving end of getting accommodations at school. I'm now on the giving end, which is really exciting for me," she said.