Just before my master keeper gently hurried me off to the ER that August Long Weekend, I sat on my couch in my beautiful character apartment with my computer on my lap, changing my profile picture on my facebook page. I was completely unaware of what would happen next, that I would almost completely disconnect with my working mind and brain and body… and yet, looking back, somehow, some way, I did know. Mind buzzing, I chose to change my profile pic to one that my master keeper had taken of me climbing the mountain stairs that led to the Seoul Tower in Korea. I’m blurry because I’m running up the stairs in a silly, fatigued stupor, it’s night, the path is dark and it looks like there is much farther to go. I wrote a caption underneath, “A journey of a thousand miles begins with a single step. See you at the top!” I finish it off with a happy face and changed my facebook status to this: “He who has health, has hope. And he who has hope, has everything.” I then put on my best pyjamas, wrapped myself in my best shawl, put on my red and blue monkey socks (because they were funny and I knew that everyone would see my socks at the hospital, so why not make everyone smile?) and announced that I was ready to go. It was like I knew I was going to be in the hospital for a while, that I knew something big was going to happen, that whatever it was it was going to be the biggest challenge yet and I entered into it with peace and humour and a certainty that I would get through it, that I would see everyone at the “top” when everything was over.
In the days after I was released from the hospital, one of the messages I wrote myself was that I must “analyze artifacts of my past.” Completely submerged in my mania, I took over 200 pictures of my parents’ house, confident that upon further investigation I would discover clues that would lead me to my “destiny.” It was all quite exciting. It was as though my entire life I was leaving clues for my adult self to find, that “we” were all in on this master plan to help Elena succeed in life and “we” didn’t even know it! It’s a lovely thought, isn’t it? I’d like to think that the day I left for the hospital, my future self was smiling at me, leaving me a message of encouragement, telling me that everything will be okay.
The Lupus Society of Manitoba has asked me if they can post a link to my blog on the new website they are in the process of creating. I said yes. I called this a “medical blog” when I started it, the chronicles of my “Lupus Life.” I try to keep it “Lupus-focused,” which is easy these days considering it pretty much defines my world right now. I am very interested in how it will evolve as my life shifts back into the world that lies beyond the mental battleground I’ve been existing in. My writing may become less and less interesting to some, the high stakes gone and the smoke and debris of the “Battle of the Brain” just a distant memory. I am the first to admit that although life feels fascinating to me after all of this, Chipper and Evil Elena definitely spiced things up. As I get better and better, my friends and family may not feel the need to read this anymore, content that the worst has passed and all is well. My readers who don’t have Lupus may find that there is little to relate to. I may find that despite my link on the website, my readers will dwindle as weeks and months pass. I am prepared for that. I don’t think I’ll be offended.
I called this blog “Lupus Face,” but when you click on a post, the bottom says “by the face” – the Lupus part is gone. I set it up that way when I was still very sick and not of sound mind, so I guess you could say that was another message left by my mysterious “future self.” My “face” looks the way it does because I want it to look that way. The word Lupus is interchangeable with any other illness or problem I can think of. I find myself amused that my moon face is the physical manifestation of this, although not entirely surprised at the poetic interconnectedness of my mind and body.
I’m just another face in a sea of billions, just trying to keep my head above water, trying to find meaning in my life, climbing one step at a time to some unknown destination. I’m flailing my arms and most times I look like a fool. I will be your silly face if you like, but please know that I’m blurry and I don’t know much. All I know is that the Battle of the Brain is nearing it’s end, the flags of victory all but plunged into the bloodied soil. And as it is with any war, it will ripple on despite it’s “end” in more subtle, silent ways that are just as powerful but much less conducive to epic movie metaphor magic. This is where the real work begins actually, the “in between,” that time and space between major flare ups. When you’re really sick you have the luxury of not having to do anything, decide anything because you’re sick – how can you? It’s easy to be sick. The harder choice is to be well.