Emily Bracale was sitting in a chair in College of the Atlantic’s Edith H. Blum Gallery in Bar Harbor, talking about the difficulties people with Lyme disease sometimes have in convincing a doctor they need treatment.
“They’re told, ‘It’s all in your head and we can’t find anything wrong with you,’” said Bracale, a Bar Harbor resident, painter and longtime art teacher. “There’s no positive blood test, there’s no rash, you never saw a tick. How can you measure brain fog? Everybody forgets stuff once in a while.”
Then, she stopped talking.
“Where was I going with this?” Bracale said, looking around the gallery as if the paintings on the walls would help jump-start her mind. “I had a train of thought that was going somewhere and it’s gone. It’s just gone. See, this happens all the time.”
Bracale could only smile and shrug her shoulders at her occasional forgetfulness. We all have those moments, as she pointed out. We all feel tired or confused or achy at some point. That was why Bracale waited for years to really find out why she was feeling that way and why she lost her desire to paint.
Although she never saw a tick and has never had a positive blood test, those symptoms and many others, led Bracale to realize she had Lyme disease, a bacterial illness most frequently spread by the bite of an infected deer tick.
Last summer, however, Bracale embarked on a regimen of antibiotics. Although she’s far from recovered, the treatment cleared her head long enough for her to start creating art again for the first time in years.
Bracale’s latest exhibit, “In the Lyme-Light: Portraits of Illness and Healing,” is the result of a recent spark of creativity. All but one of the 26 works in the exhibit, which will close March 28 with a public reception at the gallery, deal directly with Lyme disease.
The work in the show is unlike the watercolor landscapes Bracale had publicly displayed in the past. The images, done in acrylic paint and a myriad of materials in collage form, is depressing yet uplifting at the same time. It’s uncomfortable yet humorous. It’s as enigmatic as Lyme disease itself.
And it has helped Bracale work out her feelings about the disease while explaining some of her own behavior to family and friends who never knew she was sick.
“When I told my friends and family that I was this sick, none of them knew, none of them realized what I had been going through,” she said. “It wasn’t until I showed my mother and my sister the first five paintings that they started to see where I had been. It was scary showing them. But this is part of my torch, right here. This is what I’m supposed to do.”
Life coming back
Lyme disease has been spreading north in Maine and can be prevalent in areas with a high concentration of deer. The highest concentrations of deer ticks are found in southern Maine, according to a map from the Maine Medical Center Research Institute’s Vector-borne Disease Laboratory, but deer ticks also have been found on Mount Desert Island in high concentrations.
Bracale, a 1990 College of the Atlantic graduate, is certain she picked up Lyme disease before she moved in the late 1980s to Bar Harbor.
Growing up on an 80-acre farm in northern Michigan, Bracale was frequently outdoors. Her family’s land was one of few in the area posted for no hunting, she said, and deer were a common sight.
Bracale first visited Maine as a teenager to look at COA. She ended up at Amherst College in Massachusetts but transferred to COA after a year and has lived in Bar Harbor since, with the exception of brief stints in Virginia and Ellsworth.
“I love the mountains and the ocean and [the fact that] it’s an island, so there is a sense of community as a given,” she said of life on MDI. “There’s a sense of ‘us’ here, more than any place I’ve lived. It just feels like home.”
After her permanent move to MDI, Bracale began teaching art, both privately and in public schools.
But she never felt quite right, she said, and started to be bothered by symptoms of Lyme disease, which include swollen glands and joints, back stiffness and pain, muscle weakness and twitching, difficulty concentrating, forgetfulness, disorientation, mood swings and dozens of other conditions.
The symptoms were similar to diseases such as lupus and fibromyalgia, which is why Lyme is often called the Great Imitator and is hard for doctors to diagnose.
Bracale had attributed her illnesses to outside forces — the stress of being a busy mom or pregnancy, divorce and financial strains. She went to traditional doctors, alternative-medicine specialists, therapists. Bracale retreated from friends and family, including son JohnHenry, now 6, and daughter Hana, now 14.
Bracale was at her lowest point in 2003 when her eyelid began to droop as if from Bell’s palsy, and her other symptoms were at their worst.
“I just felt like I was dying or wanted to die,” she said. “If I didn’t have kids, I probably would have taken care of that. It went to my brain and really affected everything about my daily life.”
Last spring, however, after reading that Lyme disease had a neurological component, Bracale started to suspect what had happened to her.
Bracale was referred to Meryl Nass, an internist at Mount Desert Island Hospital in Bar Harbor who is a nationally recognized expert on the effects of the anthrax vaccine. Bracale said Nass is one of few doctors in Maine who believes in Lyme treatment beyond a four-week course of antibiotics, which Bracale said is considered the standard treatment.
Bracale started antibiotics in July. She painted three works last summer, took a break until January, and painted 22 more in the two months leading up to the show.
“I started to feel like there was life coming back and I wasn’t just coping,” she said. “The work just poured out of me.”
Expression and discovery
It wasn’t only paintings and collage that came quickly for Bracale. So did the words. She put together an 18-page catalogue with detailed descriptions of the story behind each work.
“It has been a hugely satisfying process of expression and discovery,” Bracale wrote of putting together the show. “Each painting came as an inspired idea, which held meaning beyond what I was aware of in the beginning — a gift each time.”
The works of “In the Lyme-Light” are a departure from the realistic watercolor and wood-block landscape scenes of Mount Desert Island and the Cranberry Islands that Bracale had displayed in the past.
The new work, which was painted with acrylics, includes media such as sand, cotton, metal, cloth and photographs. It seems to have a child-like quality — no surprise considering Bracale’s background as an art teacher and the sense of discovery and clearness Bracale has been feeling lately.
The exhibition shows the range of Bracale’s experience with Lyme disease, from the physical symptoms that can be seen on the outside to the despair she felt on the inside.
Yet as dark as it became, Bracale depicts hope, too. The first painting she completed last summer, “Rock Bottom,” is an image of a figure curled up inside an egg-shaped form that has sunk to the bottom of a body of water. It draws from her experience of feeling she had bottomed-out. Yet Bracale lined the egg form in green, which she interprets as a symbol of a healing light.
She imagines her struggle with Lyme disease as fantasy, as in “Fluff and Icebergs,” in which she uses cotton to depict a friend’s vision of pulling white stuffing out of Bracale’s stomach, and another vision of icebergs melting, as metaphors for the disease leaving Bracale’s body.
Yet she also painted her experiences in a more clinical manner. When a doctor asked her about her sleeping habits as a way to figure out Bracale how was dealing with arthritic joints, Bracale imagined her nightly pillow-positioning as an instruction chart in “Sleep — Assembly Instructions.”
Some of the work serves as an explanation to those who might not have understood why Bracale pulled away from friends and family.
In “Fine, thanks!” Bracale paints herself responding to a greeting on the street, while in the back of her mind — written in hazy chalk pencil on the birch board on which she painted — is a list with dozens of Lyme disease symptoms.
Near the end of the exhibit, Bracale paints with more overt hope and promise.
“Healing Supports,” which is the last piece Bracale finished for the show and the final piece of new work in the gallery, includes photographs of her children and trinkets given to her by friends. The work has been left unfinished, to show there’s still healing left to do.
“It reminds me of why it’s still worth continuing on the course of healing even though it’s a rough road,” she said.
In the present
The train of thought Bracale lost during her recent interview in the Blum Gallery came back to her while she stood near the painting “Half an Apple,” which depicts a classroom scene in which all is not right — numbers on the blackboard seem to float in no particular order, and a student looks skeptically at the teacher.
The half-apple in the foreground implies the teacher is only half-present. Her body is there, but her mind is elsewhere. It’s how Bracale felt when she taught art classes in the throes of her brain fog.
“That’s the lost thing,” Bracale said. “Most people [who suspect they’re ill] go to the doctor and are told it’s all in your head. My story illustrates the opposite and that’s why it’s unique. I was the one covering up my symptoms and saying it was all in my head all these years. I had to do all the research and advocacy, which was very empowering even though it was difficult.”
Although Bracale still has bad days when the Lyme disease flares up, her treatment has allowed her to be more “present,” as she put it, for her children and in her daily life. The treatment has allowed her to look forward to a March 20 benefit in her honor, which will feature a screening of “Under Our Skin,” an award-winning documentary about Lyme disease, at Reel Pizza in Bar Harbor.
It has also given her hope to continue painting.
“Today, I don’t know. I’m probably going to rest for a while,” she said before leaving the gallery for the day. “I think there’s more healing paintings coming and more images not just having to do with Lyme but with more inner, spiritual healing.”
Blum Gallery, is open 9 a.m.-5 p.m. daily, 105 Eden St., Bar Harbor. The Reel Pizza benefit will be held at 1:30 p.m. Saturday, March 20. Suggested donation is $10. For information on Emily Bracale, go to www.davistownmuseum.org/MAG/MAGhome.html and click on Emily Bracale. To reach Bracale, e-mail firstname.lastname@example.org. For information on Lyme disease, visit www.ilads.org.