I had only experienced my life flashing before my eyes once. I was in the hospital due to complications from lupus, on the verge of what would become a major crisis. Movie clips of my life projected on the walls of my dank hospital room as I whispered to my mother, ‘I can’t breathe.’ 

I had only experienced my life flashing before my eyes once…until I saw Shiong-En Chan’s one woman play Kissed by a Butterfly at the St. Ambroise Montreal Fringe Festival last week.

Shiong-En took my breath away safely, soulfully. Kissed by a Butterfly, based on diary entries of Shiong-En’s hospitalization during her third and most severe lupus flare, takes her audience right into the gut of lupus, of what it is like to lose control, and how we resiliently climb back up from a crisis and choose to live. Aptly named, the butterfly is a universal symbol for lupus as many patients get a facial rash that forms the shape of a butterfly.

This remarkable woman has found a way to tell her story through theatre and dance; demonstrating lupus as the vicious wolf it can be. Shiong-En turns the illness inside-out; exposing its rawness, the ache of the heart, the distortion of the mind and body from medication and trauma, the underbelly of the healthcare system and its extraordinary health care providers, and the unstoppable spirit of life that can emerge from a life-threatening experience.

I sunk into my theatre seat; captivated from Shiong-En’s first breath. I had met Shiong-En for the first and only time during the flare she was recounting.  I knew her story. I had felt her pain when I met her - an unexplainable, unspoken soul connection between lupus patients.

My first emotional crack during this 60-minute theatrical gem was when Shiong-En explains her need to break down. Using the expanse of her stage (and not one prop), she circles in a rage that was visceral. I felt it in my every pore.

Shiong-En has a gift. Of acting, dance, but most impressionable from my angle, her ability to articulate and share her experience. She has bravely told the story of so many through her own. 

I came out of her show un-composed, shaken, weepy. I could have sat in my seat for hours, thinking; basking in a calm sense of belonging mingled with emerging memories of my own that had been buried safely for years, reluctant to emerge.

As Shiong-En took her final bow, I noticed tears in her eyes. I can only imagine how emotionally charged this exceptional actress must feel after unraveling this gut-wrenching and perhaps cathartic performance.

Kissed by a Butterfly explores the relationships that Shiong-En formed with staff and her roommates and their families while in-hospital. It is through her observations of her elderly, dying roommates that she chooses life, and fights for it.

I believe that many people experiencing crises with their health have encountered that moment when ‘I can’t’ turned into ‘I will’. Shiong-En drives this life-changing moment home.

Shiong-En concludes by describing the transition that a butterfly makes to become the beautiful being that it is. She states that a kiss by the lupus butterfly is an assault to the system. You don’t know where, when, how long or how bad it will be. But when you come out of it, you are transformed; never taking time or your body for granted. “It has taken me on an incredible journey,” Shiong-En recounts. And she is now flying with the present.

Congratulations Shiong-En, and thank you for this gift.

We, the patients at the Montreal General Hospital Lupus Clinic, are very lucky to have such an exceptional, caring medical team. They will stop at nothing to bring us to health.

This show has been rated as one of the top ten shows of Montreal’s Fringe Festival 2012. Here are some great reviews!




Written by Wendy Singer