She Paints, Writes, and Does Her Own Stunts — All for CMT
Karina Vaile is an accomplished visual artist, but a diagnosis of Charcot-Marie-Tooth (CMT) disease type 1 subtype A 12 years ago gradually forced her to change the way she paints her pictures. These days, she uses her mouth to help her hands.
Because CMT symptoms, such as joint pain, muscle weakness, and extreme fatigue, get in the way of painting, Vaile, 45, had to learn to work with her whole arm rather than her wrists, which normally are immobilized in splints. And she learned to balance the paintbrush between her fingers and to use her mouth to steady her painting hand.
“You change the way you work, you change the things you can do,” Vaile said in a video interview with Charcot-Marie-Tooth News. “Because everything changes day by day.”
CMT may affect her work, but Vaile also wants her work to have an effect on CMT.
She pledges her paintings to raise money for CMT-focused nonprofits and has auctioned her art for the CMT Research Foundation (CMTRF), raising about £4,000 (about $5,300). She was an ambassador for CMTRF from 2020 to 2021 and CMT UK also has shared Vaile’s work to help raise money.
“When I donate, the entire lot goes to charity, minus the canvas cost and postage. My time is always free and never charged for,” she said.
During the pandemic, Vaile started donating her acrylic paintings of animals, flowers, and other natural imagery to hospitals, schools, assisted living facilities, and animal hospitals close to her home in Hayling Island, near Portsmouth, U.K., according to her website.
She said she was inspired to donate art to hospitals as a result of her own stays there, twice when she was a child to extend tendons in her heels, and once for double-hip replacement surgery at 35. She recalls the plain, unadorned waiting rooms and wanted to change that. The first hospital she donated to was Frimley Park, in Camberley.
“I had said [to the hospital], ‘I really want to give you a painting, because I want to give your staff something to look at, and to actually give them a break because they were in so much of a turmoil,” Vaile said. “They were going through so much with [COVID-19] and seeing the people dying and having a really hard time.”
Alan Mak, the member of Parliament who represents Vaile’s constituency, Havant, even paid her a visit to thank her for donating to National Health Service (NHS) hospitals. She received a Havant Constituency Coronavirus Hero Award from Mak in 2020.
“Karina is an absolute inspiration for overcoming her rare disease to produce these beautiful pieces of artwork for the NHS and local care homes,” Mak said in a 2020 article from The News, a Portsmouth paper. “I know that they have been really well received and during this difficult time they will brighten the day of hard-working staff and patients.”
Vaile grew up in Surrey, England, on the outskirts of London, where she began to sketch the world around her, including the rabbits, guinea pigs, dogs, and cats she grew up with. She hid the drawings under her bed, but they were always uncovered by her mother when she cleaned her room.
Vaile went on to study A-level art and media studies at Godalming College in Surrey.
With her CMT diagnosis, that zeal for art has taken on a whole new meaning.
“Without the art, I think I would have been done for a long time ago,” Vaile said, adding it also helped her to get through the pandemic. “It helped me express feelings. It helped me release, because you put a lot of what you’re feeling into your art. It’s an expression, and I love to do something that people enjoy, as well.”
As important as donating her art is to her, Vaile said what’s also vital is raising awareness about CMT because she sees a lack of knowledge about the disease in England. That’s part of the reason it took more than 30 years for her to be diagnosed correctly, she said.
There is another reason Vaile has become so active in CMT advocacy. Her eldest daughter, Kiann, 21, was diagnosed with CMT when she was 8.
It was a difficult diagnosis for mother and daughter to work through, but Kiann has finally come to terms with the reality of living with CMT. Vaile taught Kiann the lesson her mother, who was disabled from a polio infection at age 3, taught her: CMT may force you to do activities differently than others, but you can always do anything.
Vaile recalled seeing her mother adapt to her own disability, and how she would slide down the stairs on her bottom because she had difficulty walking.
“Without her, I wouldn’t be who I am. I wouldn’t be as strong,” Vaile said.
Vaile’s two younger children do not have CMT.
She also has written and illustrated a children’s book to help children like Kiann, who didn’t grow up around any kids her age who have CMT. The book tells the story of a boy with CMT, Ziggy, and his pet rabbit, and how the pair end up saving the world from aliens. She is currently looking for a publisher.
The book is meant to “help emotionally, to say you’re hurting, you’re in pain. It’s OK,” Vaile said. “You can’t do this, do it a different way. … use the CMT as a superpower as opposed to ‘I can’t do it.’”
Vaile also is raising money and awareness for CMT in other creative ways. In October 2020, she plunged into the cold, waters off Hayling Island without a wetsuit.
On June 3, she’ll be strapping herself to the wing of a biplane in Cirencester. Vaile said she’s always loved airplanes. She wanted to be in the Royal Air Force when she was younger, and this event will be the closest she can come to realizing her dream of flying. A GoFundMe created for the event has raised £365 of a £3,000 ($3,986) goal.
Everything she does — art, donations, and physical stunts — is about ensuring the healthcare system and the public know about CMT, she said.
“I’m 100% dedicated to making sure that everybody knows what CMT is in England,” Vaile said.