Lyme Disease: Portrait of an Epidemic

I created this body of work as an honest, unvarnished account of Lyme disease and the infections that often accompany it. Through the lens of expressive figurative painting, I tell the stories of several Warren County residents (including myself) who have suffered with Lyme disease and co-infections, often in silence, hindered by late diagnoses, and saddled with lasting consequences. Additional works depict the reality of treatments, painful symptoms, and toll on one’s psyche. The visual art, combined with personal stories and educational materials, offers the viewer not just an aesthetic experience, but a more complete understanding of the Lyme epidemic and the necessity for increased research, accurate diagnosis, and more effective treatment.

This project is made possible by the New York State Council of the Arts Statewide Community Regrant Program, administered locally by the Lower Adirondack Regional Arts Council, with the support of the Governor and the New York State Legislature.

In addition to LARAC, I would like to extend a heartfelt thank you to the following partners whose support has made this exhibition and the associated programming possible:

-The brave individuals who shared their Lyme stories: Bob, Deanna, Elizabeth, Jenny, Jill, Maggie, Masyn, Raelynn, Warren

-Holly Ahern, Chief Scientific Officer at Aces Diagnostics & Professor Emerita of Microbiology at SUNY Adirondack

-Rebecca Pelchar, Director of the SUNY Adirondack Visual Arts Gallery

-Warren County Public Health

Nov 12 Panel Discussion

click the image below to view all works in the exhibition

"Pain Unfiltered"

A self-portrait by the artist, this painting depicts a difficult day in the midst of a Lyme flare.

"Still Life with Lyme"

If not diagnosed early, Lyme disease (and co-infections) can become difficult to treat. The quantity of medications and supplements are overwhelming and hard to keep track of, especially given the brain fog that often accompanies the illness. The cost can be prohibitive, since visits with Lyme literate doctors are often not covered by insurance and supplements and alternative treatments must be paid out of pocket.

"Warren"

What did you gain from Lyme? "Focus, determination, passion for life. I'm not gonna lose my life. I'm not going to lose my quality of life. I'm NOT gonna let this thing win. Um, so that real deep drive within myself to make sure that I'm there for my daughter, that I'll be able to laugh and share in the finer points of life again. What makes life worth living to begin with? Because honestly, I really was at a point where if it weren't for my daughter, I probably would have taken my life. I could not stand how my body felt. Like I was really in trouble. I was in trouble, like all I wanted to do was die. I was in so much pain."

Warren is an acupuncturist who sees many Lyme patients in his practice. During his own illness, he found the Rife machine - an alternative to conventional medicine - was a critical piece to healing. He now offers optional Rife sessions to his patients along with acupuncture.

"Jill"

"I was so sick from the treatments that I couldn't even help my own kid for a year. Like, I had to tell myself she's already got it, probably, so let me take care of me, then I can take care of her. Well, that sucks because she probably wouldn't have gotten so bad if I could have been like, oh, let's treat both of us in tandem. But I was trying to learn about it myself. Stay above water, work, bring in money, and not forget about my oldest kid. You know, that's another whole issue. We talked about that for years. She became a great artist because of us having to go everywhere to help Maggie, you know? So there was that whole dynamic of kind of, sorry, I don't have enough time for you too. That's a sad thing. Yeah... I mean, nighttime too. She [Maggie] had so much pain when she would go to bed. We would take turns trying to help her get to sleep, you know? But she always wanted me more. She may not remember it like that. But I would have to be like, George, you got to go in there. Like, I get to a point where I'm not tolerant anymore because I'm dying for my time or my own respite. Um, So there was that dynamic, but I also remember even after that, like she had a drawer under her bed and I pulled it out and it was all these toys that were stored under there. The poor kid didn't get a chance to even play because she missed sections of her life where she would just watch TV to distract herself from the pain, you know? So there's a lot of unresolved grief even about her childhood."

Jill was likely ill with Lyme disease for more than 20 years before she started treating. Raising two daughters while sick is difficult enough, but even more so when one of those kids is also ill with Lyme and co-infections. Jill is a therapist with a keen understanding of the impact tick-borne illness has on mental health. This painting shows Jill in her office, seated next to a file box holding years of documentation and research she's collected to support herself and her daughter as they navigated Lyme disease.

"Elizabeth"

"My dad had started getting every medical file I'd ever had, my dad had what we called the Blue Binder. Just this blue ginormous binder, and my dad would get every lab, every test, everything, like I was his full-time job at that point. My dad was a retired police officer and I was his full-time job, my health was. Certainly I am way closer to my parents than most people I know. I talk to my parents multiple times a day because they're the reason I'm alive. I truly think that, if medically my body didn't shut down, I think mentally I would have. Hearing other people's stories who weren't believed, I mean, the medical community might not have believed me, but my parents never, ever questioned how I felt, and so I try very hard not to take them for granted."

This painting of Elizabeth depicts the support she has received from her parents throughout her Lyme journey. At 16 years old this competitive swimmer and normal, active teen, became sick with Lyme disease and could no longer keep up, spent most of her days sleeping. It changed her life trajectory. Six years passed before she had a diagnosis and began treating for Lyme and co-infections. Now 36, she has been sick longer than she was healthy. She still suffers with brain fog, fatigue, and chronic pain.

"Masyn"

"The headaches sucked a lot. Like, I had migraines like every morning. And my joint pain, I still have it. So yeah, that's bad too. Definitely I can't do sports as well as other kids because of my knees. I'm good at sports, but it hurts my knees. Like, I play golf and I have to walk around the course. And I have to sit on the tee boxes because I have to give my knees a rest. And my partner in golf was like, what are you doing? I'm like, my knees are burning. And, um, Yeah, it just really sucks."

Masyn is 13 and has suffered from Lyme-related symptoms since he was 2 or 3 years old. His mother, Raelynn, believes he may have been infected in the womb, since she also has Lyme disease. He doesn’t know what life is like without Lyme. In this painting, Masyn is behind a fence, which represents the separation and isolation - physical and mental - caused by an entire childhood of illness.

"Raelynn"

“My older boys were 6 or 7 when the real me left, so they don’t really know the real me. I don’t even know the real me anymore. I know THIS isn’t me. That’s all I know. It’s almost like I can’t feel joy any more…like things don’t feel real to me. It’s like there’s a dark cloud. I used to say if God could reach his hand down and pass it through my brain like a net and just take all the fog out so I could be more clear, because it’s so clouded.”

In this painting of Raelynn, the bluebirds represent joy leaving her, while her head is surrounded by the dark clouds of brain fog and sadness.

"Deanna"

In her senior year of high school, Deanna became very ill. She went from playing tennis competitively and loving the outdoors to disabled, unable to move. Lyme disease has led to a host of complications, like POTS, EDS, MCAS, and terrible pelvic pain caused by endometriosis - a lot for a 26 year-old to handle. Lyme took her identity, caused her to distrust the medical system, and eroded her self-confidence. It gave her an intense anger that fueled a passion to help others like her. She now works in Washington DC, advocating for increased federal funding for Lyme disease.

"Maggie"

"That was when the heart pain would happen. So my entire like, chest area, like all of this muscle around my heart would squeeze and be in so much pain where the only relief I could get would be I would faint. So I used to faint, and it would only be for about like 3 seconds. But I would do it probably like 30 times a day. But I just felt like I couldn't breathe...And I used to have fainting buddies in school who would like catch me or walk with me. That was probably the worst, the heart pain, really. And they sent me to a cardiologist, because they wanted to make sure that it wasn't actually an arrhythmia. Yeah, it was the costochondritis. But it was, it was terrifying. I was 12."

Maggie remembers being bit by a tick when she was 8 years old but, because her Lyme test wasn't positive, she wasn't treated. From that point on her health slowly deteriorated, to the point where she couldn't even walk. She's 22 now. After many years of various treatments, she still has symptoms. Lyme, she says, took her childhood. This painting portrays Maggie at 12 years old, suffering with the pain of costochondritis.

"Bob"

"I feel like I constantly remind myself that I've got some baggage that the journey that I took, the implications are with me forever now. You know, the cancer journey and then this [Lyme disease]. So that sort of weighs heavily. You know, it'd be nice to wake up someday and not have to be saddled with any of that. I really like being in the woods. I love climbing the mountain that's right behind us. And I struggle with the fact I can't go up there. We've changed some rules like that in our house. I can't climb alone anymore. Yeah. I can't go up a ladder. Water skiing. Golfing is just too hard. It’s just not fun. The memory and confusion part is also a battle. Yep. You know, we call it in our circle here that we get muddled. I'll be doing something and I'll just either forget where I was or what I was doing and I'll have to start over."

Bob lives on Lake George and, when we met, I could feel that the lake was a part of him, and he a part of it. This painting is meant to reflect that connection. The herons are a symbol of patience, stillness, and adaptation. The spheres in the forefront represent the parts of Bob that he's had to let go due to illness.

"Jenny"

"I look for the light between the leaves. Because if you don't, you'll just be swallowed by that darkness. It's so much easier to go there than to keep doing what we're doing. You have to find that new joy, whatever it is, you've got to find that new space. You gotta find the things you're grateful for. Like truly at an elemental level, what you're grateful for. And they can be the simplest things, like the light coming through the leaves and the trees and the sound of a windchime. And just...feeling the light on your face, having that second in which you're not experiencing any symptoms. Yeah. Which are rare, rare moments."

Jenny is an artist who suffers with chronic symptoms of Lyme disease and finds the landscape healing and inspiring, especially as she deals with ongoing pain and discomfort. In this painting, I've placed her in nature, bathed in light and embraced by the flora.

"Lynn"

"Chronic Lyme disease doesn't just make you sick, it changes you. When I finally got a diagnosis, I was so relieved. I felt validated after years of seeing doctors and not being believed. I finally had answers for the many symptoms I'd experienced. I naively thought the diagnosis meant I could now be healed. Unfortunately, I learned it’s not that simple. I treated for about three years and, during that time, I grieved the me I used to know and questioned who I was now. I had to leave a 25-year career and could no longer do many of the things I loved. I felt like a burden. It was a very dark time in my life."

The painting represents the grief, discomfort, and loneliness of chronic Lyme, and Lynn's struggle to recognize the person she has become.

"Private Agony"

"Sometimes I find myself saying I wish any part of my body could hurt over what part of my body does hurt because, for me, my biggest pain is the urinary symptoms. And there's no relief for it. Like you're just feeling it constantly. It's like having a UTI for 9 months. And you can't really ignore it. Like you can go on with your day and pretend it's not there, but ultimately there's this constant sensation in the most private part of your body that you are living with. I didn't want to talk about it."

This painting was inspired by the several women who described pelvic symptoms, both urinary and reproductive, that caused tremendous pain and/or were embarrassing to discuss.