Since my diagnosis and treatment of anti-NMDAR encephalitis four years ago, I’ve come to realize two very important things.
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
Recovering from a brain injury takes an extraordinary amount of time and patience. In the case of anti-NMDA encephalitis, even the most optimistic doctors speaking of best case scenario patients will forewarn at least 12 months of rehabilitation. For most of us it is much longer, with bits and pieces of ourselves reappearing along an unpredictable timeline that spans an indefinite number of years. This extended length of rehabilitation can often cause further frustration, stress, and anxiety and it can feel as though you take one step back for every two steps forward.
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.
GUEST POST. In my 25-year career at the Department of Foreign Affairs and International Trade, Canada, I have had 3 postings abroad: New Delhi, Damascus and Paris. Each location an exciting and interesting journey, with unique charms, life-long memories, and friends I may not have had the opportunity to meet. Upon my return to headquarters in 2004, I was looking forward to establishing a place I could call a permanent home for myself and my family, before heading out again on perhaps one final posting.
That fourth and final posting did come – although sooner than expected and without the requisite pre-posting formalities.
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.
Three years ago, in the year 2013, I “misplaced” approximately 175 days of my life. I suppose my body decided that all of my life’s energy during that time was better spent on battling the monsters in my mind than retaining cognitive memory. My recollection of that time period disappears (quite conveniently) nearly the exact same time I was rushed to the emergency room — almost to the hour, in fact. It vanished rather abruptly, like a power outage; all of a sudden there was just blackness. And, in stark contrast, when conscious awareness finally returned, it was more akin to the dawning of a new day in winter; it came back slowly, a little at a time and never to its full strength.