Project Lyme believes in the power of community and storytelling to raise awareness about tick-borne diseases. While sharing your story can be helpful for the general public to better understand your struggle, it can also be a great way to begin the healing process. More specifically, we encourage you to leverage art to convey the deeper meaning words cannot always touch. We have compiled a gallery with several pieces of impactful artistic expression with the hope it will reach outside the community to bring understanding, and inside the community to bring hope and healing. To learn more about the benefits of Art Therapy you can read our blog here.
Suzanne Morlock, “Uncontained: The Dance of the Chronically Ill”. 12’x14’x15’, medical detritus, audio, video, invented elements, and found objects
My journey has been 20+ years. I could write a book with the 20+ doctors we sought healing and insight from. Disappointed time after time with the usual merry-go-round which included misinformation, misdiagnosis, and lots of misunderstanding. Now I work to live each day with the best balance of pain and unknowing.
Having been a visual artist for 30+ years, my lived experience creeps out periodically in the form of installations. Above is a still from the latest project which was part of an immersive installation show in Casper Wyoming from January-February 2022. This work also includes a video and the sound of an oxygen concentrator which you can learn more about on my website.
I’ve done a few works related to chronic illness that is part of the fabric of our lives. Art it helps to express what’s happening, builds compassion, and raises awareness.
Sarah Kushwara, “Eclipse of Thales”, 18 by 24 inches, Oil and Casein on canvas
Living with Lyme is almost inexplicable, but I can say that it reminds me of the ballad, “The Rime of the Ancient Mariner” by Samuel Taylor Coleridge. The mariner’s ghoulish and nightmarish journey of living torment is just unbelievable and equally as unbearable. When he stumbles back into society he should be some kind of hero, but his story and his abysmal suffering are belittled, or almost feared. He is forever changed, and because of that, wise beyond his years, and lonely. He gains a new sense of spirituality, but not many people have the capacity to fathom a journey such as that.
I have tried to capture this journey in my piece. “Eclipse of Thales” tells the story of an ancient battle in Anatolia between the Medes and the Lydians; a solar eclipse interrupted it. The ethereal lighting and ghostly atmosphere generated from this experience are highlighted by the three figures in the clouds which symbolize the true horror of an invisible affliction on the horizon.
In the glass hummingbird feeder is a figure trapped in the fetal position. This is my soul trapped in a body, afflicted by vector-borne illnesses; I can see out into the external battle but can only be a desolate observer. The child’s hand that holds the feeder is the guiding light. A solar eclipse may have the power to stop a battle, but it doesn’t interrupt the battle of the bugs within or change their consciousness.
Edina Khan, “Lyme Life”, Oil paint on wood
This is a self-portrait wherein I am gazing into an old mirror passed down to me by yet another of my family lost to a battle with tick-borne illness. Every single member of my NY family has battled tick-borne illnesses, including myself and my children. I believe I contracted Lyme many years ago, in the 80s, and possibly was born with it. I recall symptoms back to my childhood when I contracted a fever mysteriously every time we traveled. In the 80s I had many tick bites both in NY and in the Army. I was athletic and didn’t succumb to it until the 90s. I was active in the Lyme community when my health allowed. I even co-authored a published case study on Gestational Lyme disease with Charles Ray Jones, MD, and others.
My son was diagnosed with Congenital Neuroborreliosis at 2, after 11 PCRs for Borrelia burgdorferi, he finally had a positive. All through my second pregnancy, I was treated with IV Zithromax. My daughter appeared to be fine until she was 1 month old. She was hospitalized at CHOP and diagnosed with Babesiosis. She was treated for a month, had a blood transfusion, and seems to have been cured. My son is doing OK now as well after 3.5 years of various IV and oral antibiotics. I too treated similarly, with years of antibiotics both IV and orally. In fact, I was completely well following my initial treatment and got my Master of Physician Associate studies at 40.
Unfortunately, in 2014, I was bitten, and have been fully disabled from Bartonellosis, Chronic Lyme, and goodness only knows what else, ever since 2016. Our Mom committed suicide following a long battle with Lyme disease and Bartonellosis in 2005. My Paternal Grandma died days prior following a stroke, Dementia (most likely from untreated Lyme disease). My father recently was diagnosed with A-fib and continues to get periodic fevers that I genuinely suspect are caused by lingering tick-borne illness. My daughter-in-law, from Texas, was treated multiple times incorrectly for syphilis when she actually had Lyme disease. It has been an ongoing source of heartache that often has left me in tears. Tick-borne illnesses are capable of cracking the strongest of us, just as this mirror is cracked. I am a fighter, and stubborn, and continue to improve with ongoing treatment. I hope to one day re-enter the workforce and enjoy life, as I, and so many, deserve.
Kaitlyn Oleinik, “Turning Lyme Into Lemonade”
For my piece, I was inspired by a Warsan Shire poem in Beyoncé’s film “Lemonade” and my battle with Neurological Lyme Disease. The poem says, “you spun gold out of this hard life, conjured beauty from the things left behind. Found healing where it did not live. Discovered the antidote in your own kitchen. Broke the curse with your own two hands. You passed these instructions down to your daughter who then passed them down to her daughter… I was served lemons, but I made Lemonade.”
I am inspired by this poem because I had to take healing into my own hands and fight to find my own answers in my journey because many doctors did not listen to me. I learned resilience and a fighting spirit. I will pass these lessons on to my own children one day. Lyme has been very difficult for me for the majority of my life, but I have come out as a stronger, more empathetic person. My self-portrait is levitating a lime, a symbol for Lyme, with magic gold spinning to hold it. I learned how to heal myself on this journey and turned Lyme into Lemonade.
Karen Gloyer, http://www.karengloyerbooks.com
I was undiagnosed for 14 years. 10 years ago I was told that I had Chronic Lyme Disease as well as Babesia and Bartonella. I lost my ability to read and write and couldn’t even remember how to take a shower.
Since then, I have gotten into nature photography. Beauty is all around us. We just have to look for it. This shot is an orchid that my husband asked me to take a picture of at a Home Depot. I would like to somehow help the Lyme community to see this beauty and hope through my photographs.
Dianne Cutler, “Dark Places”, Plaster Casting with Mineral Pigment Wash, 20” x 20″
Like so many of us, I’ve spent years wondering what is wrong with me. Multiple doctor visits, both alternative and western, left me to doubt what I knew in my heart to be true: I was sick and nobody was helping me. It wasn’t until I begged a naturopath to take me on as a client (she didn’t want to take on any more patients), that I discovered I had what I call the Holy Trinity of tick-borne diseases: Lyme, Bartonella, and Babesia with a smattering of other unfriendly coinfections. Thus, began my journey down the rabbit hole. I’m still trying to figure out how to heal myself. It all feels daunting and overwhelming. The advice, protocols, they do and don’ts are varied and endless. I am my own living lab rat trying this supplement and that regime, afraid of the herx, alternating with the fear of not herxing. Some days I don’t know which is worse, the physical pain or the mental and emotional challenge of rising above my circumstance. All I know is I have a long road ahead of me to achieve what I consider a state of wellness again. In the meantime, I reside in some very dark places and take hope in other people’s success stories.
Maria Johnson, mariajohnsondesign.com
My second bout with Babesia and Rickettsia in 2021 was rough. I was unable to work my full-time job as a Graphic Designer and spent much time riding the subway into Manhattan to go to medical appointments. Although this was not exactly a fun reason to go into Manhattan, I tried to make light of it. Since I have a passion for street and architectural photography, I decided to make an NYC photography bucket list. On days that I was feeling up to it, I would pick a location, shoot it, and check it off the list. This gave me a sense of accomplishment and purpose. I even had a few photos featured on popular NYC photography Instagram accounts and one featured in a display in Penn Station.
This shot of the New Yorker Building is one of my personal favorites. For over a year, I wanted to go to the Edge in Hudson Yards to shoot photography, but my visual and vestibular issues always got in the way. One day this past March after officially being released from many months of vision therapy, I got to check the Edge off my bucket list. I definitely had to pay for it the next day, but it gave me a glimmer of hope that there are better days to come in my Lyme journey.
Cheryl Jividen, “Lyme Light” 30″ x 24″ oil
Push and pull, paddle and float, crawl and crash. These are words that resonate with my long Lyme journey. In my pursuit to identify what this life-stealer was, answers finally came with Rocky Mountain Spotted Fever and Lyme’s Disease diagnoses and later Mold Toxicity.
I’ve always had an appreciation for art and was a sometimes, hobbyist painter over the years before my life changed. But as I’ve healed and regained myself in energy, thought, and being, I had a deep need to try something new – abstraction, in a big way. With a large canvas, I set off with just three colors; black, white, and green. Rather than sit, as usual, I stood at the easel. Though the application was foreign to me, the desire to break away was strong. Instead of the fine detail realism, I had done in the past, I used my arms to propel wide strokes that felt like freedom released. It was invigorating and satisfying.
When it was done, it revealed itself to be my story. A mix of loss, isolation, weakness and strength, hope, steps forward and back. The darkness of battle and the light in overcoming. My first abstract, Lyme Light will always be my favorite.
Kara Bennett, http://www.eldervoices.net
My Healing Journey with Lyme disease began in 1985 and has been both a lifesaving and near-death experience. The “Searching for Borrelia” collage represents an example of some of my work as a psychologist in the Virtual World of Second Life. With our nonprofit organization, Elder Voices, I offer education about mental health with nonfiction and fiction stories. This work started in 2007 when I was no longer well enough to continue my psychology practice.
People from different parts of the world can share their stories in real-time interaction as Avatars around our Community Drums. The stories are about finding ways to hold onto what you value in difficult times. For example, creating a virtual representation of what you care about. In the picture, my Avatar is riding a horse which I liked to do when I was well. My dear friend and colleague, a neurologist, enjoyed being represented as a Mermaid which helped her when she was critically ill with cancer, as she had enjoyed scuba diving.
These imaginary experiences helped us both feel hope for finding care for these complex illnesses by working together as a global community. My colleague also helped with the Second Life Relay for Life with Avatars to raise funds for the American Cancer Society. I would like to have the Search for Borrelia on Second Life increase awareness of people who have long-term problems with Lyme disease.
If anyone wants to enjoy being an Avatar on Second Life send an email to email@example.com and I can help offer directions. The program is free to use, and I am sponsored on SL by the Nonprofit Commons and there is no cost for anyone. Our website which is another way to contact me is being updated so the email is best. Hopefully, it will be available again soon at http://www.eldervoices.net.
After being sick with Lyme and Babesia for seventeen years, I was sitting harbor side contemplating my unsatisfying home life. My spouse provided little support during my illnesses and my change in health revealed the many shortcomings in my marriage of thirty-four years. I watched as this little dinghy swayed from east to west, although remaining firmly moored. It seemed metaphorical for the choices I needed to make for a better life. Which direction do I choose? I divorced and this photo is the beginning of my artistic expression as an amateur photographer and finding a passion that has greatly informed my healing process.
Rose Beverly, “Twisted Struggles”
I started making these doodles to calm and distract from the chaos in my head. I didn’t intend for them to actually represent that chaos, but it’s become comforting to be able to pull some of it out of my mind and collect it on paper this way. Drawing has always brought me joy, so it’s also served as an important part of my healing process – even before I even knew I had Lyme, making art was a therapeutic outlet. There have been stretches of time where my hands hurt too much, the fatigue was too heavy, my mind too foggy, and I wasn’t able to create at all. These times have made me extra grateful for all the moments I’m able to hold and direct a pen, and the abstract forms have helped loosen the hold of perfectionism that often plagues my artistic projects.
Riley Sims, “Which is Brighter”, Acrylic on Canvas, 36” x 52”
I am a 21-year-old, college art student, who doesn’t even remember what it is like to not be riddled with Lyme Disease. Over the past few years, my mental and physical health has been a roller coaster, due to the limitations and effects of Lyme disease. Recently, I have been struggling to stay positive and to continue to have hope that there will be an end to this pain. Which is Brighter is a visual representation of my struggle with believing there is a light at the end of this “Lyme” tunnel.
The spontaneous, unplanned spills of paint symbolize the unexpected downfall of my physical health. The bold, bright colors create a sense of happiness and optimism, making the most of what life spontaneously throws at you. As my mom always says, think of the cup half full instead of half empty. The other half is representing the repeated limitations of having Lyme Disease, from the painful symptoms to the multiple medications having to be taken. This work is a visualization of the push and pull of trying to stay positive while dealing with such a demanding disease. This piece has helped me find my voice as an artist as well as process what life has thrown at me.
Which side is brighter to you? To me, the bright colorful spills shine a lot brighter. Although I struggle, I will continue to have hope and will keep fighting.
I have recently found out that after 10 years of searching for answers, I have Lyme and co-infections, Bartonella and Babesiosis. This painting simply means it always rains before the rainbow. All the pain, swelling, treatment, tears, sadness, grief, and loss – all of it comes with healing. So after the journey, we rejoice when the rainbow comes and we can’t give up the fight. It may take a while, but we’ll get there. I WILL get there.