It’s been 26 years since I got that fateful tick bite. I was 8. No one would know that it would alter the course of my life. In fact, it’s the reason I became who I am. After 19 years without a correct diagnosis, I found a doctor who did the right blood-work and asked the right questions. I started treatment for late stage, neurological Lyme disease the moment I returned home. (My doctor was 3 states away: an 8 hour drive each way.)
A bit of background first: I was born and raised in the Kansas City area of central USA. That is where the bite occurred. Over 2 decades, symptoms began to steal my abilities and my personality. Eventually I found myself bedridden and in horrendous pain. What began as disautonomia, evolved to include constant tremors and syncope, migraines, anxiety, depression, arthritis, polycystic ovarian syndrome, fibromyalgia, chronic fatigue syndrome/ME and eventually after finding an LLMD the diagnosis of Lyme and co-infections (Bartonella and Babesia and a few other parasites) it was finally time for treatment. Navigating the US healthcare system to treat was a wild ride that for a considerable time included around 40 prescribed medications a day and the ever-dull Lyme diet of no sugar, gluten or dairy. The difficulty of the herxing and medicine schedule was compounded by the need to fight the system nearly every day to ensure my care and treatment could continue.
In 2016, life circumstances allowed for me to travel to the UK for the first time. This would be a huge step in recovery. While there, I learned that my physical symptoms improved greatly. Maybe it’s the sea air, maybe sea level, maybe the lack of intense Kansas City weather changes (talking 40*F in hours), maybe it’s the afternoon teas… But, in all likelihood, it’s all the above.
Somehow, despite the illness, I managed to find myself in theatre. Now, 6+ years after I began treatment, I have decided to share that journey in the form of a new play called, “The Beautiful Dance of Life & Death”. Lyme is extremely isolating. Friendships are lost. The treatment and the disease cause pain and severe depression accompanies every moment. There was not a drama I could turn to- nothing, outside one documentary and internet support groups, where I could see someone representing the experience of Lyme.
I vowed that if I made it into remission or close enough to, I would reach back for other Lymies and spread awareness and understanding. After my excruciating treatment began, I logged my experience in journals which would eventually be converted into a show. With the goal to to show people that they are not alone. Their sister, daughter, or friend with strange and “unexplained” symptoms and behaviors are not crazy or making anything up. I created a piece of art I wish I had had in those tough moments of insane pain.
The show itself is an intimate piece. We debut it at Brighton Fringe Festival in the U.K. May 27th- June 2nd. 2019 Why debut in England first? (Other than the obviously Lymie answer of symptoms feeling better,) it started with the scale of rural touring and some lovely friends who took me under their wing and mentored me into producing original content. It continued with me having done my freshman show about Lyme, which came out of the anger and the symptoms and social losses from the illness, called, “How to Walk Through Hell” at Brighton Fringe in 2017.
Despite wanting to work on other kinds of projects, I believe sharing this story can save lives so I have put my personal passions on hold. People need help now. They need to see that they aren’t going crazy, they aren’t alone, and if they are not sick themselves, it is likely they already know someone with Lyme.
Erin R Hartnett Productions
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