Excerpt from Blurry Face & the Impending Victory of the Battle of the Brain: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…
A month and a half later, I started this blog.
Exactly seven years have passed and I am still amazed that somehow, while in the throes of brain inflammation-induced psychosis, I not only knew I was about to face something life altering, but I also knew I would conquer it. Amidst all the suffering, it was a beautiful gift, this access to a powerful, confident inner voice that wanted to be heard.
Writing in this blog has helped transform my perception of who I am, my disease, and the kind of life I want to live. It uncovered this magical online platform for healing and connection. I now know that I needed to share my story in order to fully accept what was happening to me.
Terminology note: If you were wondering about the term “keeper” in my quoted text, I stopped calling my loved ones that a few years ago. I can recruit people to help me accomplish my vision of wellness, but at the end of the day, I am my own keeper. I am the CEO of my health.
To begin Face Forward’s 7th year on a positive note, here are my top 7 wellness victories:
- I can sleep lying down! (no more chest tissue inflammation)
- I’m down to one medication and it’s NOT chemo or Evil P (prednisone).
- My rheumatologist sees me every twelve months vs. every two weeks.
- I left my FT job, for a flexible, PT position that allowed me to rest if I needed to.
- Five years after I did #4, I left that PT job to pursue my true passion.
- I ran two 10 K races – I used to struggle with walking one block.
- I haven’t been hospitalized since this blog was started.
It hasn’t all been victories and trust me, there have been times when I’ve felt completely paralyzed with fear and anxiety. In fact, the last few months, I’ve been feeling really disengaged and unmotivated when it comes to my self-care. I am starting to feel the consequences and yet, I am unmoved. I’ve been trying to make sense of it on my own, but after weeks of frustration and negative self-talk, I think I’m going to try to figure it out here – with you. Part of the reason why I continue to write is because I think it’s important to be candid about every part of chronic illness, especially how it effects us mentally. More to come on that later…
For now, I will say happy 7 years to this weird, little blog that was born out of chaos, but remains a steadying reminder of miles traveled and hard won. “The top” is in every step, over and over again, everyday of this lupus life.
Thanks for travelling with me. I’m glad you’re here.