It seemed the story only begun at a time when I thought my life was coming to an end. I was only twenty-six years old when I was diagnosed with a chronic autoimmune illness called Lupus (Systemic Lupus Erythemathosus). Within just a three year ordeal with this disease, I have survived kidney inflammation and pericarditis; an inflammation of the fibrous sac that wraps around my heart (that was just the tip of the iceberg.....)
Bright 2015 - Family trip a few months after my diagnosis
Lupus is a curse
Lupus wrecked havoc in my body.
Within a few weeks, I turned from being an independent, self-sufficient woman, into a frail and dependent person. Simple tasks such as changing clothes or showering left me breathless, so much so that after completing each task, I have to rest completely. For many many months, the bed and the couch became my sanctuaries.
I didn't know who I was anymore. I couldn't do anything I always used to do. I couldn't even care for myself. The majority of my days was spent sleeping. I completely fell apart. The little things that I thought I have gained through my short life experiences, I could no longer use them to define me. Because I could no longer perform those roles... at all, without needing assistance.
Lupus is also a blessing...
Quietly, in that deep, complete helplessness... I found myself.
When my Lupus flare was at its worst and I could not do anything, I heard the sound of my heart beating as I was lying in bed with my ear on the pillow. It was thumping inside my chest vibrantly, without me asking; without my command, it was keeping me Alive.
It was then that I realized the magnitude of being alive.
For the first time in my life, I found myself in awe of Life. Finally, for the first time in my life, I was falling slowly but genuinely in love with my own body. A deep sense of gratitude keeps growing with each day that I found myself waking up again and again. Still extremely sick to the bone AND YET, also, still alive.
Cairns 2016 - First solo trip as a Lupie, with Yuko-chan,
Londolozi, South Africa 2018 - Commitment to Self-Healing with Martha Beck & Co.
Lupus takes me places
Lupus took me on many journeys. Many of them so raw, so painful and terrifying.
Knowing and feeling so close to death and being so young... so young that I have not even begun to scratch my existence in the universe. Yeah... dying without having to live was the scariest thing I have ever experienced.
Lupus walked me through copious loss of friendship, love, romance and vitality. Lupus coached me to befriend Grief and learn the wisdom it has to impart.
This is my story.
This is my journey back into my Body, into Being.
It begins with Pain.
Then it breaks open a hidden treasure that is my true soul.