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!
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. Christopher Reeves
Nearly four years ago, the very beginning symptoms of anti-NMDA were slowly beginning to fray the edges of my physical and mental health. And, though it would take a few months to fully unravel and then, even after extensive treatment, it would take more than a year to recover, this time of year always brings to mind the very beginning of this journey. I find myself reflecting on where I’ve been and where I’m going.
There are many moments in this crazy thing called life that are wrought with hilarity – when circumstance and happenstance collide in perfect comedic timing to deliver a small moment of unadulterated joy. In these precious moments, we smile, giggle, chuckle and laugh for a number of reasons. But ultimately, we laugh because, for the most part, LIFE is fricking FUNNY. Sometimes it’s funny-ironic, sometimes it’s funny-peculiar and sometimes it’s funny-ha-ha.
And, sometimes, life is not funny at all, and yet, we STILL laugh – as a way to cope or escape, as a distraction or to hide more intense emotions. Sometimes we laugh simply to keep ourselves from crying. We laugh in the face of adversity because on some days, it’s all the emotion we have left.
I recently visited my hometown in the Black Hills of South Dakota. The brief trip was a welcome respite from life as I currently know it and, if only for a short time, it allowed me to escape back to a time and place that I’ve always considered the “good ol’ days.” During the visit, I caught up with long-time friends at one of my old favorite hangouts. Simply spending time around people and places that feature so prominently in my cherished memories of the time BEFORE any hints of illness existed was good for my soul.
I used to HATE the words Anti-NMDA Receptor Encephalitis (ANMDAre)! The name, similar to the disease it represents, is complicated and mysterious. It offers no insight to what the disease entails, unless you are a physician and, even then, you may not have ever heard of this illness, only recently identified in 2007, by Dr. J. Dalmau.
Living with an autoimmune disease means living with many uncertainties. But there are many things you come to realize in time, that – had you known before – may have provided some small comfort along the way. And, let’s be honest, upon initial diagnosis when the whole world seems to have shifted and the life you had planned has been forever changed, we’ll take all the comfort we can get.
I’ve always been able to escape through music. music. No matter what I was struggling with, I could always find a song to help me cope or relate. I firmly believe that music has saved me from myself on more than one occasion. And even as I found myself drowning in the sea of encephalitis, I relied on the sweet escape of melody and lyrics to bring me through. I fell asleep listening to it, found comfort in it and even used it to communicate when my own words failed me
We, as humans, have contemplated, deliberated and sought to understand the concept of time, since, well… the beginning of time. The inevitability of its passing and the ensuing impact of its very existence on human lives has been a source of constant wonder in our ever-increasingly hectic lives. Each and every moment seems to be dictated (directly or indirectly) by the omnipresent ticking away of seconds, minutes, and hours.
I have an ongoing love-hate relationship with sleep. I used to have a t-shirt that read “I’ll sleep when I’m dead.” That was, of course, back when my daily stamina seemed limitless and I couldn’t stand the thought of missing out on a single moment (a chaotic and, fortunately brief, side effect of young adulthood, to be sure). But I have always loved to sleep- and frankly, I was good at it!