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
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.
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.
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.
For just a moment, imagine three young friends on the school playground having an in-depth conversation about the color purple. One of the adolescents was born blind and the other two are trying to describe what the color looks like to an individual who has never seen a flower, an eggplant, a crayon, or even a sunset. Imagine that of the two friends with sight, one sees the color purple and is reminded of a big silly dinosaur they grew up watching on TV and the other simply recalls the fresh grapes they ate last summer on a relative’s vineyard. Both are picturing the color purple and both are correct, but they have two very different perceptions of what purple appears to be, based on the input of their other senses. How can these friends describe a sensation or feeling to their blind friend? What does purple feel like or taste like?
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.