Since my diagnosis and treatment of anti-NMDAR encephalitis four years ago, I’ve come to realize two very important things.
In light of Father’s Day tomorrow, this post is dedicated to my dad. Thank you for always showing up!
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.
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.
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.
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