How My Body Cast Sculptures Bring Visibility to Myalgic Encephalomyelitis

This May 12th is the virtual global #MillionsMissing protest for myalgic encephalomyelitis (ME) health equality. We’re asking for increased government funding for research, clinical trials, medical education and public awareness.

This year I decided to create a body cast series called Broken Body/Enduring Spirit to help bring more visibility to the lives affected by this disease. The series is a sculptural representation of my experiences living with myalgic encephalomyelitis, and explores the relationship between myself, my body and the outside world.

My story of ME is the classic textbook presentation of this disease. I contracted an awful surreal flu that made the homeostasis of my body go haywire — and I’ve been in viral purgatory ever since. While I’m only considered “mild” on the spectrum of this disease, it detrimentally impacts every aspect of my life.

Broken Body

Broken Body symbolizes the day in, day out unrelenting grind of a survival state. ME is a multi-systemic, neuroimmune disease, characterized by a plethora of symptoms which fatigue is but one of. The fatigue of ME is akin to living under house arrest, incarcerated by an inexplicable bodily collapse. There is no Alcatraz as inescapable as a body with ME.

In this primal state you can can feel emotionally battered and weary. It’s a disease that strips away your external life, until all that remains is your raw spirit, exposed to the external elements.

It feels like constantly trying to salvage and stitch together what precious fragments of health remain. There’s a constant fear of collapse, and shame sinks into the cracked bedrock of your identity. There’s also a sustained battle against the ubiquitous falsehoods surrounding ME—ones of rejection, ridicule and judgment— because it is a contested illness. This only adds salt to the gaping wounds. There’s another painful part. It will seem like almost any other opinion carries more weight than your own, and your capacity for autonomous judgment will be viewed as less than a credible source. This is especially true if you’re a woman or person of color due to the gender and racial biases that exist in our healthcare systems.

Living with ME requires a strength beyond our physical sense of the word. Most of us lose our jobs, some of our friends, the capacity to enjoy simple activities and a great degree of our freedom to act spontaneously. Along with the grief of these losses, and deep within my fractured body, lies a burning knowledge. If I ever weather this illness, I will certainly have the grit and determination to pursue every dream held close to my heart.

Enduring Spirit  

Living with ME is a balancing act of holding in one hand the hope of finding something that will help, and in the other—acceptance of a new disabled reality. There isn’t a day that goes by that I don’t wish I was healthy again. But I’m also coming to the realization, that this in-limbo, hopefully transitory place—is life, and my life right now.

My body might feel broken, but I also want to connect to it in more ways than just resentment, anger, frustration and grief. Not to diminish these valid emotions in any way, but to make room for another way of relating to my chronically ill body.

Enduring Spirit is about this very space, and it embraces rest and restoration, in the face of capitalism and productivity. It’s here that I call back my power, self-compassion, and self-worth—and wash them over my experiences of living with ME. I also remind myself that I am enough in this moment and every moment, just as I am. While by no means a cure, it does help me cope. Its a way to remind myself I am still me, even if I am unable to fully express myself in the world in the ways that my heart yearns to.

I don’t know how long I will have to navigate the war zone of ME. But I do know that the landscape of ME is changing. A worldwide pandemic has brought post-viral disease to the forefront like no other time in history. I believe we are at cusp of a new era that will have a firmer grasp on the challenges and medical needs of the ME community.

I hope you’ve gained a deeper understanding of the experience of living with mild ME shown in a more creative way.

For more information on advocacy and research, be sure to check out The MEAction Network and The Open Medicine Foundation.

You can view the corresponding Youtube video here.