I first found Jennifer because we were in the same Facebook group and she posted an incredible painting called “The Scream” (below). It really sums up the experience of being a Lyme patient. Here is her story and some of her amazing awareness art.
My name is Jennifer Scott and I was born, raised, and currently live in the beautiful city of Chicago.
Other than my family, drawing and creating were my first loves. I remember sitting on the floor of our front entrance and using the first step to the second floor as my “art desk.” I was always hounding my poor mom with questions: “What should I draw next, Mom? Do you like this color for my flower? Does it look good?” Drawing filled my downtime, and I can honestly say that my love of creating prevented me from ever experiencing the harrowing “boredom” that many children identify with these days.
I took some art classes in high school, but I’m mostly self-taught. I recently hunted down my high school art teacher and took her to lunch as a way of thanking her. Life took me in so many directions and pulled me so very far away from my art. How was I to know that the love and passion for art she instilled in me would turn out to be my healing, saving grace 36 years later?
I started experiencing weird symptoms in 2003. It started with painful head zaps and feeling “off” and quickly escalated over the next two years. I started feeling numbness and tingling in my legs, dropped a ton of weight, bruised easily, and had an extremely difficult time focusing and concentrating. Initially, my doctors were confident I had multiple sclerosis. Then they thought it might be leukemia, lupus, rheumatoid arthritis, myasthenia gravis, or good old psychiatric disorders. The doctors tested me for everything under the sun, but nothing ever came back positive. I started having severe anxiety, panic disorder, and depersonalization. I’d see my hands on the steering wheel, but it wouldn’t feel like they belonged to me. It was as if I were above myself, watching my life evolve in a dreamlike state.
I was getting sicker and sicker and no doctor could figure out why. I was starting to have fevers, sweats, and chills. Eventually I talked to a coworker’s dad who was a doctor in Maine. After a lengthy phone conversation, he said, “Jenny, if I held up a red crayon you would tell me it was red. You’re holding up all these crazy symptoms and I’m telling you it’s Lyme disease.” He then gave me the information for IGeneX Labs and I got tested. (Editor’s note: IGeneX is a great lab to use if you want accurate results—there is a high risk of false negatives with Lyme testing). A few weeks later the lab faxed me my results. I was both IGeneX and CDC-positive. Markers lit up like Christmas tree lights!
Being the passive-aggressive person that I am, I immediately faxed my results to every single doctor who had told me, “I don’t know what it is, but it’s definitely NOT Lyme disease.”
Sheer frustration caused me to pick up my old box of pastels. I hadn’t done anything with my art after high school; life and what was expected of me took precedent. I had a busy career as a corporate event planner. I played sports and loved hiking, running, and biking. I coached my girls’ cheerleading and gymnastics teams. I was an Awana (Bible-based children’s education program) leader at church and taught Sunday school. I had an active, sometimes problematic social life. Life was too demanding and busy to take time for fun stuff like art.
But then I got sick. Really sick. I was forced to live away from my family in Kansas City for the better part of two years, undergoing extremely aggressive treatments for Lyme, babesia, bartonella, erlichiosis, anaplasmosis, and Rocky Mountain spotted fever (Lyme disease coinfections transmitted by ticks). Whatever bugger bit me was LOADED! So many PICC lines and Greshong catheters. So many medications, supplements, and holistic treatments. So many long, intense hospital stays. I was forced to leave my career and take the position of full-time patient. I was on disability and mostly housebound.
For years I tried describing my symptoms verbally. But no matter how hard I tried to make people understand what I was feeling, words weren’t powerful enough.
One day I grabbed my pastels and drew “Expressions of Lyme I and II.” They weren’t pretty pictures, but they were real. After getting positive feedback on my work, I decided to keep going. Since then I have been blessed to have my artwork displayed and sold in galleries and online spaces, and to have started Created to Create Ministries—art workshops with a positive message.
My art really helps me cope with being chronically ill. When I’m lost in the creation of a painting, my mind becomes completely absorbed in what I’m making. When my mind is focused on the work, it’s not focused on all the crap my body is feeling or the financial fear that comes along with this illness. Art both takes me away from my illness and allows me to express my feelings about it. Art has once again given my life purpose and meaning—something that disappeared when I became severely ill.
My symptoms often interfere with my work, but sometimes they enhance it: they might make me create really ugly, dark pieces—things I normally wouldn’t choose to paint. I painted “The Scream” when my pain was unbearable.
“Lost Sensations” depicts a time when I was in the middle of drawing but suddenly lost all feeling in my fingers, causing me to drop my charcoal.
My fatigue, weakness, and pain cause me to rely heavily on others to accomplish my artistic goals, especially my husband, sister, and other family members. Any time I have a solo show or art festival, a gallery showing, or a workshop to facilitate, they are always by my side helping: carrying, loading, unloading, and staying with me in case I get tired. I honestly would not be able to do ANY of this if it weren’t for the love of my Creator and the support and encouragement of my amazing family.
On days when I can’t stand at my easel and paint or teach a workshop, I just sketch from my bed or couch. Messy acrylics and brushes are way too much effort when you aren’t having a good day. On my bad days I grab paper, pencils, markers, or chalk and just start drawing whatever is around me. These media are much easier to use when you’re working from bed!
Right now I’m going through a pretty aggressive treatment protocol for bartonella reactivation (bartonella is a Lyme disease coinfection that can affect the brain). The psychosis symptoms were so horrific I thought I was going insane. It was somehow comforting to know it was the illness and not me.
I’m currently focusing mostly on treatment and getting better, but I am a member of my local artist guild and we’re working on some awesome public art displays. I was honored to be chosen to paint one of the bus stop benches in the guild’s “Art Stop” project, and I’m looking forward to bringing even more art to public places. I hope to do a few art shows this summer, but my main focus is doing workshops for my art ministry.
Find out more about Jennifer’s art ministry.
See more of Jennifer’s work (including her non-Lyme related pieces) on her website.
Check out her Facebook art and ministry page.
To learn more about Lyme disease, check out Lyme Disease Challenge, Lyme Warrior, and Project Lyme. (There are many great websites, but I find these sites well-organized and easy to read and navigate.) To find a Lyme-literate practitioner, go to ILADS.org or Global Lyme Alliance.