To Be Broken In, 2022
In 2019, after a rapid decline in my health, I was diagnosed with a rare connective tissue disorder called Ehlers-Danlos Syndrome. This condition affects nearly every part of my body, namely my cardiovascular system, immune system, nervous system, and joint stability. Suddenly, I was forced out of the life I recognized and into one of chronic and severe pain, significant disability, and a new set of rules and regulations to live by.
This show is a kaleidoscope of the notes and impressions I made in real-time as I bore witness to my own deterioration. It is a collection of little documented moments of my sadness, desperation, isolation, anger, longing, grief, acceptance, and resilience that find reflections in each other. Though it sometimes feels this way, I would be wrong to say that my body is destroying itself; it is preserving itself with everything it knows how and with the same fierceness that I work to preserve the parts of myself that allow me to love.
As my usual ways of creating became untenable, I experimented with different creative processes that were in line with my declining and changing function: painting with my feet when my neck injury affected my hand function, audio-transcribing prose, drawing while lying down or walking, pacing with clay and imprinting it into trees outside, overlaying medical images on my phone from my bed, and working at odd hours, including the middle of the night.
It’s been three years since I was diagnosed and in many ways I still do not know how to live like this. I have tools now—awareness about my condition, the ability to educate others, and daily physical therapy—but they are not enough. Every day is a practice in finding reasons to love and in not giving up on giving my grief the chance to transform. There is no cure, and despite my laundry list of daily treatments, the closest thing I’ve found to a remedy is the courage to keep documenting my degeneration as it happens in real-time and the strength to keep telling the story of what it feels like to be broken in.
In Neuropathy’s Wake (the poem written on the mirror)
Grid of 6 x 6 inch drawings
For sale
Acknowledgements
In Memory of Sherry Wein
For those who bear witness to my degeneration and
lovingly support me through it—you are a guiding light in darkness.
Thank you to Alex, Ann, Beth, Brian, Celeste, David, Ellen, Kiri, Margaret, Melissa,
Nicole, Peter G., Peter H., Rachel, Samar, Sohael, and Wynn.
Thank you to Edouard, Jill, Maggie, Mark, and Michael for supporting
my development as and artist and human being over the years.
