You Can’t Un-sing Your Song
By Donna Falcone
This is the fifth in a series of posts about how many in the Lyme community turn to the arts as a way of supporting their healing and taking their mind off the daily struggle of dealing with Lyme disease. As someone who had a 30-year career in the arts before getting sick, I was interested in finding out how many of us, like myself, worked in the creative arts before getting sick. I was also curious about whether others have turned to the creative arts as a release, as I did with my photography, as a way to see the world outside of illness. – Sandi Bohle
In what I call my old life, I was a teacher. Over the course of a lifetime, I had worked with teachers, child care center directors, undergraduate students, Child Development Associate students, preschoolers, Kindergarteners, second graders, and somewhere in between all of these I was a music teacher working with toddlers and their parents.
In 2008, when I was diagnosed with Lyme Disease and co-infections, all that changed.
Years of undiagnosed infections had left me with a pretty complicated illness and treatment was harder than I ever expected. At the time of my diagnosis, I was working as an Early Education Specialist for a fabulous Head Start agency in Pennsylvania, and I adored my job. No matter how hard Lyme and treatment were, I insisted Lyme disease would be temporary – not my job – and stubbornly worked for one full year after diagnosis. Unfortunately, I grew sicker and treatment took more and more out of me. After a year, I waved the white flag and left my job with a heavy heart. I’d lost my career and my circle of colleagues, and with that, my identity seemed to dissolve into a pool of sorrows.
Who was I? I didn’t know anymore. What could I do? Well, I had always loved writing. There were a lot of people out there struggling, just like I was, and maybe I could write for them. I started my first blog called Along the Way, and it chronicled the confusing period when I had a growing list of symptoms but no diagnosis, and the struggle of early Lyme treatment. I developed an interest in photography which got me outside, where all the beautiful flowers and bugs and sunshine were. I shared my photos on my blog with poetry and essays, and I wrote about being sick.
Something very interesting began to happen. I noticed that the more I wrote about symptoms, sickness, and fighting between the opposite Lyme camps in the medical world, the worse things got for me. Maybe, just maybe, this was no coincidence.
Perhaps I needed a different kind of blog – one that didn’t talk about all of the challenges and treatments, the Lyme Wars and the controversy. Maybe it was time for a blog that just offered resources, inspiration, and beauty. The Brighter Side was born – first as a website, and then came its younger sister, The Brighter Side Blog. The Brighter Side Blog was truly one of the joys of my life for a long time. It was light and airy, resource driven and, I hoped, courage inspiring. I learned to focus on this beautiful life, not my Lyme. I wrote my blog, journaled incessantly and even learned to paint.
While it’s true that even now, nearly eight years later, I still have to treat relapses and manage lingering issues like pain, fatigue, and unilateral deafness, it is also true that the difficult period of treating decades old infections (and all the heartbreak that went with it) is past. The grieving was long and deep, and now I can move forward again.
It wasn’t time and treatment alone that helped me emerge from the other side, the darker side, of Lyme. It was noticing the impact of my actions, and making a conscious decision to refuse devastation.
I am a writer now, an occasional musician, an artist, and one of three poetry baristas in the Mischief Café.
When I want to understand deeply or find guidance, I write. All I need is a blank page and the willingness to simply begin writing, even if (especially if) I have no idea what to write about.
When I want to get out of my body, I paint. There is no thinking about Lyme Disease once the process begins. There is only doing. It’s like I don’t even have a body anymore, and this is a wonderful vacation. Sometimes a feeling or a memory can lead to painting, which can lead to poetry.
Photo by Sonia Joie
Donna Falcone is a painter, writer, and lover of song who has recently moved from the hills of Pennsylvania to a little town deep in the heart of Georgia. Donna writes on her website, www.donnazfalcone.com, where she also displays her poetry, artwork, and photography.
Donna’s website can be found here.
The Brighter Side blog can be found here.
The Mischief Cafe can be found here.