23 May Making the Invisible Visible: A New Space at Spirit Weavers
Dear Spirit Weaving Sisters—
I am a longtime admirer of your beauties. For the past several years I have watched with longing a parade of gorgeous images from the gathering, witnessing the webs of community created. The women of Spirit Weavers love and support each other. As a mother, an artist and writer, a grower and keeper of mythic lore, a hedge witch and ritualist, I feel kinship with the women of Spirit Weavers, find myself seeking their websites and social streams, laughing with the beauty, wishing myself a part of the Spirit Weavers work and world. Yet, I cannot attend.
I have Myalgic Encephalomyelitis, otherwise known as Chronic Fatigue Syndrome. I’ve had it for eight years but was only diagnosed this past December. It is a shapeshifter of a disease, and though I’ve appeared outwardly highly functional—raising three children in a blended family, an entrepreneur, a PhD student in Women’s Spirituality– after pushing through relapse after relapse I ended up bedridden for weeks this winter. I had to leave my job and school. Five months later I am still recovering, resting for hours so I can be present with my children at the end of the day. With the language of a diagnosis, I now better understand my limitations: social situations overwhelm, downtime is recovery time and resting for large portions of each day in silence restores balance in my body and brain. Teaching, talking and intensive interaction drains my energy and leaves me not just exhausted but sick. Another name for this illness is Systemic Exertion Intolerance Disease. When I overexert myself—pushing physically or energetically—I experience an “energy hangover,” a physical state akin to an alcohol-induced hangover (headaches, muscle aches, fatigue, sore throat, brain fog) but lasting for days. My limitations frustrate friends, students, colleagues, family members. I look well, I sound well, sometimes I even feel well, but I am always living at the edge of unwell with the only thing between me and a relapse being regulatory rest. As a result I’ve grown more and more isolated. It is heart wrenching to not be able to participate socially in circles of activism and community. This was my work, my writing, education and art. The irregular rhythm and unpredictable nature of this disease makes plans and inclusion difficult. In the months of my most severe illness I realized I am but one of many women at home in her rooms coping with the simultaneous nature of healing, pacing and desire to be a part of something greater.
ME/CFS is an illness of the feminine. It is estimated to affect 1-2 million Americans, most of whom are undiagnosed, and is two to four times more prevalent women than men. 1 ME/CFS can be triggered by a virus, bacteria or trauma, and most treatment focuses on symptomatic relief because there is no cure. Research into ME/CFS is underfunded, and some speculate this is because it is considered a “female” disease. We are often told it is all in our heads, a sisterhood of contemporary hysterics. Like most invisible disabilities it can be difficult to find any acknowledgement or support for engaging in the world with ME/CFS. Who wants what we have to offer, as sporadic and inconsistent as it may be? Who can hear us, our yearning to be of use to our communities?
For years my work has been to transform the stories I live into. As the mother of a child with autism, I have long been aware that the social stories around chronic illness and invisible disabilities must be transformed. As I live this story I feel the pressure of systems that demand we all be the same, live life the same, work the same, gather the same. If we want a world of equity, we must not just work for justice in the realm of obvious difference. We must perform an act of transformative magic: make the invisible visible.
This April I wrote to the Spirit Weavers team, asking if there could be a place for the invisible at this year’s gathering. When I received their letter in response, I wept. It was the first time since my diagnosis in December that I have felt seen outside the small circles of my home and family. Spirit Weavers has committed to including and re-membering, in ritual and in practice all women who cannot attend. Can you feel the story shift, and grow? By making a place at the collective table for the absent, we restore a measure of joy and awareness to the pain of invisibility.
I write for myself today, but also for those who can’t write, for all of the absent ones who might wish to attend Spirit Weavers and honor the feminine, the ancestral. I write for all of us alone in our rooms for whatever reason, for anyone whose difference creates difficulty in navigating the so-called standard streams of life. I write for my cousin recovering from brain surgery, and my spirit sister who just lost her co-parent. I write for the single mother of twins and the parents of children with no support structures. I write for the ill, the different, the dying, the elders, the weary, and for those balanced as I am on the precipice of relapse. I write for you who are are reading these words and can relate, for whatever reason.
I welcome you to the common circle of uncommon women. And for those who will be in attendance this year on the sacred Southern Oregon land (more poignant, as that is the region of my childhood home): I call you to awareness. Spirit Weavers has offered this space for sharing my story. I invite you to hold the invisible in your heart, to find us in the weaving. Spirit Weavers will have an altar on the land for calling in those who cannot attend in person. I ask you to visit the altar, to keep an opening in your prayers, to find us in the webs of weavers—online, in your teachings, in your communities. One thing I have learned the hard way to ask is: who is missing? In answering this question we build strength and solidarity. In this way we continue to dismantle the structures of oppression that harm us all. In my imagined life I join you in the woods to pray and restore, to receive and give, to radicalize and spiritualize. I cannot be there in person, but in this world of possibility there are many ways to create a space of nourishment. Already I feel the patterns shift in beauty. And here, in the small space of my home, I am filled with joy.
Information on ME/CFS and chronic illness:
SOLVE ME/CFS Fact Sheet
#MillionsMissing Action for ME/CFS
What happens when you have a disease doctors can’t diagnose: Jennifer Brea TED talk about ME/CFS
Joanna Hedva, Sick Woman Theory from Mask Magazine, “Sick Woman Theory is for those who are faced with their vulnerability and unbearable fragility, every day, and so have to fight for their experience to be not only honored, but first made visible.”