Her Lyme Story
Ashley’s story is similar to many other patients in the community. She has been sick for over four years, has no recollection of a tick bite, and never saw a rash. She went to multiple rheumatologists and infectious disease specialists who eventually found her infection and diagnosed her with “post-Lyme disease syndrome”, over 9 months after her first symptoms.
She experienced a myriad of issues including eye floaters, light sensitivity, pain in her joints, muscles, and bones, as well as terrible fatigue which caused her to be bedridden, sleeping close to 14 hours a day. Ashley also experienced neuropsychiatric symptoms including depression, psychosis, memory loss, and anxiety. This disease totally turned her life upside down. Previously very active, she was forced to quit her two jobs in order to get the disease under control.
Changing the Narrative
Since her diagnosis, Ashley has fought her way back to relatively good health. She thanks the efforts of organizations like Project Lyme and advocate groups like The Lyme Army for their help towards a better understanding of her condition and the support to feel like she could make a difference.
As she began to feel better, Ashley took a job with the National Park Service. This not only helped her to get over her fear of being outdoors but served as a jumping-off point for her personal advocacy. During her time working there, she got to speak with park guests about tick prevention and raised awareness about Lyme disease. She also made inroads with state-level park organizations including Hagerstown Parks and Rec, where she was able to get awareness flyers placed on park signage.
Since leaving her position with the National Park Service, Ashley has continued to level up her connections. Emily Keller, the Mayor of Hagerstown, Maryland recently met with Ashley who shared her story and outlined the growing issues that Lyme disease creates. Upon hearing from Ashley, coupled with statistics on expanding case numbers in Maryland, Mayor Keller plans to formally issue a Proclamation raising awareness about Lyme on May 17, 2022.
Ashley is happy to see growing awareness around the country. While she knows individuals only make up a small piece of the puzzle, she encourages all those impacted by Lyme to find and use their own voices to make a difference.
I spent a lot of time trying to be that person (who raises awareness about Lyme disease), but all you can do is drop a seed, and the proclamation is another example of that
Creating Art and Awareness
Outside of her advocacy, Ashley (@ashtheartist) is a singer-songwriter. Her song “Speak the Truth” tells the story of her diagnosis and illness. It is currently being mixed and mastered for release. She has performed this song many times, first with The Lyme Army at a rally in DC, and more recently at a Lyme disease music festival called Bless The Woods which went viral after a local news station recorded her performance.
Music is what helped me find my voice
In addition to her own art, Ashley has been featured in multiple documentaries. Recently released, “The Quiet Epidemic” features shots from the rally she performed at with The Lyme Army. Even larger still is her role in the upcoming “I’m Not Crazy, I’m Sick”. After her performance went viral, Ashley connected with Sypher Studios who ended up flying in from California to film her. Following her around her hometown, to the doctor, to the music studio, and discussing her Lyme journey, this upcoming film does a lot to tell her story. The documentary also follows two other patients from around the country, telling new stories and showing the nationwide impact of Lyme.
Ashley genuinely cares for bettering the lives of patients. She left the interview by encouraging those watching to not be afraid of what healing looks like. While she acknowledges this process is scary and can be lonely, it is possible to get better. She is thankful for recent blessings in her life including advocacy, her music, and the documentaries. However, at the end of the day, she must still deal with her Lyme disease but is glad to have these silver linings that help her to keep fighting.