A Lyme warrior recounts her inspiring journey from illness to walking the red carpet at the Global Lyme Alliance Gala, celebrating GLA's progress in Lyme disease research and patient support.
When I was bedridden with Lyme disease, babesiosis, ehrlichiosis, and chronic active Epstein-Barr virus, I used to daydream about fun, healthy, even extravagant moments the future. I made elaborate plans for my own wedding, debating between colors for bridesmaid dresses and flowers. I pictured myself sailing on Lake Champlain in Vermont. Though my joints hurt too much to hold a pen and my brain fog was so severe that I couldn’t type more than a paragraph at a time, I fantasized about someday writing a book about my experience and holding a big fancy book launch in New York City. I pictured U2’s “City of Blinding Lights” playing as I strolled a red carpet in a shimmering red dress.
Sometimes, even for Lyme patients whose futures feel unpredictable if not downright bleak, dreams really do come true. 
On October 9th, weeks after the launch of my memoir One Tick Stopped the Clock, I had the opportunity to walk the red carpet in a shimmering red dress at the 9th Annual GLA Gala. I was accompanied by my childhood best friend Sharon, my most stalwart supporter who stuck by me through every second of my journey with tick-borne illness, even when I didn’t yet have a diagnosis, even when other people thought I was crazy or symptoms were all in my head. Sharon knew I knew my own body. She knew something was very wrong. And she knew I needed someone by my side as went from doctor to doctor to determine what that something was. When I was finally diagnosed and then underwent intravenous antibiotic therapy and intense Herxheimer reactions, Sharon called me every day. Sometimes twice a day, despite her own life moving forward with a busy job, graduate school, and a family. And she was by my side on that red carpet, celebrating the unforeseeable gains I have made in my more-than-two-decade battle. 
But the GLA gala was not just about my own gains—more importantly, it was a celebration of the incredible strides that have been and are being made in Lyme disease research, awareness, and patient support. It was a celebration of GLA-funded researcher Dr. Linden Hu receiving a $20.7M NIH grant to study the causes of chronic Lyme disease and establish a biobank for future research advancements. It was a celebration of Visionary Leadership Awardee Rob Kobre, GLA’s Chairman Emeritus, for the incredible contributions he has made to GLA’s mission to cure Lyme disease. It was a chance to hear stories from Lyme patients who happen to be famous, like Christopher Meloni, and to meet Lyme patients who are everyday people, like Cody Mode—a sobering reminder that ticks do not discriminate and that anyone who spends time outdoors is at risk for a bite that can change their life. When host Rosanna Scott of Good Day New York asked for a show of hands of people at the gala affected personally by Lyme disease, almost everyone put a hand in the air. Sharon raised hers, too. “This is for you,” she said. The gala was, in that moment, a celebration of solidarity.
Lyme patients at home, you may feel incredibly isolated, but I am here to tell you that you are most certainly not alone.
Let me back up to the night before the gala, when I got to sign copies of One Tick Stopped the Clock at the opening of the Jon James art exhibit “Gravity” benefitting GLA. Once again flanked by friends who have stood by me the whole way, I got a chance to speak with fellow Lyme warriors as I signed books. I met patients who have been reading my GLA blogs for years and have seen themselves in my words. I met physicians who validated my own story and want to share it with their patients. I met GLA volunteers and ambassadors who are helping to spread awareness about tick-borne disease and offering one-on-one support to people who are suffering. Each person asked me how I’m feeling today. I can’t quite describe what it felt like to declare, “Great!” as I stood there for several hours on my own two feet, not bothered by fatigue or brain fog, handing out a book that encapsulates my experience and offers inspiration for others.
Spoiler alert: my story isn’t a fairy tale. It doesn’t tie up in a neat little bow. I am in remission, not cured. I did not and will not go back to my pre-Lyme life. But I have moved forward in ways I never thought possible. I have gone from barely surviving to thriving in the context of chronic illness. I have walked a red carpet in a glitzy red dress. Who knows what dreams may come true next?
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