'Hope' is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all…
– Emily Dickinson –
September 2017: I'm so proud to announce the formation of LymeBrave Foundation, Inc, a new non-profit organization dedicated to providing support programs for Lyme disease patients and caregivers!
Visit www.lymebravefoundation.org for more!
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 neurological and central nervous 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. Writing has always been my catharsis, and having that outlet when I began treatment 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 my greatest hope that through my story, you can find the inspiration for your own.
Check out my journey through Lyme Disease recovery and discover educational and awareness resources:
Learn more about the emotional impact
of Lyme Disease in the new novel, The Last Letter
Be LymeBrave! Get the book
or join the community, Being LymeBrave
Have a story to share or want to know more? Reach out!