In early 2012, I was diagnosed with Lyme disease and Babesiosis, a malaria-like co-infection that further complicates the disease, after over fifteen years of inexplicable illness and constant misdiagnosis. I was in a sudden, rapid state of decline, holding on with only the support of my family and friends as we sought to name this enemy that had damaged my body and stolen pieces of my life. I had no idea then that finding a diagnosis was only a small battle amid a misrepresented, often political war. I didn't know that treatment could be so unbearably complicated or that healing would become a promise to yourself, a choice to keep fighting for your life, made again and again, every minute of every hour of every day.
Lyme disease is a terrifying and dangerous multi-systemic illness that invades the body's organs and systems, mimicking everything from Chronic Fatigue Syndrome and Fibromayalgia to Lupus, Multiple Sclerosis, and Parkinson's disease. Without a proper diagnosis, which is too-often the case due to inaccurate testing and willful medical ignorance, the bacteria can destroy the body and mind, leaving its patients crippled by a disease and a system that refuses to save them.
I began documenting my journey with Lyme disease on my personal blog years before I even knew I was sick. Later, I would share my story in The Last Letter: A Novel--a fictionalized account of my experiences with Lyme disease. Writing has always been my catharsis, and having that outlet through the years of treatment, short remission, and subsequent relapse not only allowed me to express those heavy emotions, but it allowed me to advocate for and connect with others affected by this illness, both patients themselves and supportive loved ones. The loneliness and isolation that this disease fosters breaks you down. The knowledge that you're not alone is what keeps you going.
Sharing our stories and our struggles has been the greatest source of comfort and inspiration when facing an illness that makes it difficult to find either. Today, I'm worlds apart from where I was at the beginning of this journey. I didn't realize back then what a war this could be, how many battles would have to be fought, or just how many lessons there were to learn. I didn't know what it meant to be a survivor. I didn't know what it meant to be brave.
But I know that sigh of relief when you realize you're not alone. I know what it means to fight for your life and for your future, to hold onto the promise of something better, to look forward to a healthy tomorrow.
It's with this in mind that I envisioned LymeBrave Foundation. Five years in the making, I wanted to create a safe space in which those living with this disease could unpack the heavy emotions that often accompany chronic illness. I wanted a place where caregivers could find support tools to help them care for their loved ones without sacrificing themselves. I wanted a place where no one would be alone.
It's my greatest hope that LymeBrave Foundation will be that place to remind you to stay strong, to encourage you to be brave.