My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.Maya Angelou
The Florence Forth weekend was an amazing experience that I’ll never forget. I thought I’d share my thoughts on the trip for those of you who haven’t been able to attend or would like to know more about it. I meant to post this much sooner but the past month slipped away so fast!
The Florence Forth event is the largest fundraising effort held by the Autoimmune Encephalitis Alliance every year in Durham, North Carolina. The USATF-certified 5k and 10k races attract local and regional runners, as well as patients and families of survivors. Once, a historic tobacco town, Durham is now home to Duke University and The Research Triangle, a growing hub of technology and educational advances and research. The community is welcoming to visitors and supportive of local events, evidenced by the residents lining the streets, waving signs and cheering on runners, both downtown and in the residential areas through which the race course passes.
That sense of community and camaraderie is really what defined the whole trip for me. I had been looking forward to this opportunity for months – fundraising in earnest, fueled by my post-illness desire to be an advocate for others, and preparing for the walk itself, a personal defiance of the illnesses that tried to destroy me physically and mentally. The pride I felt contributing to a cause I believe in did wonders for my soul before I even arrived in Durham. But the real draw for me, the driving force behind my attendance was actually the chance to meet other patients and families who had overcome similar adversities.
For the first year after my encephalitis diagnosis, when I found myself most curious about this enigmatic disease, I did not know anyone else who had the same illness. Of course, I knew there were others but I could only read about them in medical research papers or auto-biographies. In my 2nd year of recovery, to my surprise, I stumbled upon several support groups on Facebook where I found a whole community of survivors. It helped a lot to hear other’s experiences and how they were coping but I still hadn’t had an actual face to face conversation with anyone who really understood the trauma and aftereffects of what I’d been through. Then, last summer I had a chance to meet Lauren while on vacation with my sister in San Francisco. Lauren and I had met through one of the Facebook support groups but meeting for the first time in person really had a huge impact and allowed me to speak freely about my experience and ongoing concerns. I don’t know if I can fully describe what it was like to be reassured that some of the oddities of this disease that continued to plague me were, in a sense, “normal” in the realm of anti-NMDA.
What you don’t learn about autoimmune encephalitis, until you talk to others who have gone through it, is how differently it can affect each individual. The disease is only really predictable in its unpredictability. Yes, there are common overall themes that you find in most cases, but as a whole there are really no “set-in stone” symptoms and behaviors that define the disease empirically – even within the confines of anti-NMDA which, as unknown as it is, is actually the most COMMON strain of autoimmune encephalitis. There are at least 13 other strains that have been observed and many many more that have yet to be identified. The rarity of the disease and randomness of symptoms is compounded further by the nature of the indications that you do have in common. The deeply personal, often out of character and/or embarrassing nature of these manifestations make it difficult to speak openly about your experience. So when you get an opportunity to sit in a room with others who not only relate but will not pass judgement, you embrace it like a lifeboat in a stormy sea. These relationships become the lifeline you didn’t realize you needed.
My favorite part of the trip was the night before the race, as we gathered at a local restaurant to meet new friends and share stories with others across the country. I found it profoundly healing – my resolve bolstered by the heads nodding along knowingly as I shared my own experiences; my soul inspired by the stories of children and adults alike who had overcome this devastating illness. There was no sign of the awkwardness that often prevails when you meet new people – our shared experiences so deeply personal and life-altering that a nearly immediate natural bond was formed with ease. It felt good to be seen beyond my disease, and even better, to be understood.
After a brain injury, I think many of us often struggle with a desire to prove ourselves to the world. We hide behind a facade of bravery and save the tears for moments alone. We don’t often talk about things like how long it takes us to get out of bed some days or the anxiety-ridden sleepless nights we continue to endure. We don’t let on the frustrations we feel when it takes us twice as long to read a paragraph or follow a punchline or find the right word for a common object. Sometimes we don’t share these moments because we’re ashamed, sometimes we’re too proud, sometimes we just don’t want to cause our friends and family any more grief than we’ve already inflicted and, most often, we just want to at least pretend to be normal. I don’t necessarily believe keeping these things private is always a bad thing – sometimes it’s necessary for a variety of reasons, but I do believe there are great benefits to having a time and place to share your struggles with like-minded people. That is what I found at Florence Forth. There, in a town I’d never been to, surrounded by people I’d never met, I sat amid other patients and families who had been through similar experiences with autoimmune encephalitis, I felt welcomed and supported. I felt inspired and motivated. And I felt another small part of me begin to heal.
The Autoimmune Encephalitis Alliance 2017 Florence Forth event raised more than $45,000 towards support, education and awareness this year. For more information on this disease, visit www.aealliance.org or www.antinmdafoundation.org