My poem is out today in Gyroscope Review’s Crone Power issue. Fee free to download a PDF version or get it through Kindle or other places in print. It’s the final poem in this issue. I hope you’ll read other’s work too.
Plans are underway for Kaleidoscope, a new project in collaboration with the scientists and artists at The Benaroya Research Institute (BRI). I also collaborated with them on the 2018 publication The Body Lives its Undoing.
That booklet, a reflection in poetry and visual art about autoimmune diseases and the impact on those living with them, featured BRI researchers and artists, physicians and patients and was an exploration of the world of autoimmunity and an expression of what it means to live with autoimmune disease. In 2019, BRI produced several public events (A Town Hall reading among others,) featuring poetry readings, perspectives from interviewees and a closer look at the artwork.
The vision for Kaleidoscope is broader, a furthering of The Body Lives its Undoing. In collaboration with BRI and other community organizations, I will produce a hybrid book of poetry, essays, and original visual art, with collages involving scientific scans, words etc., on the multifaceted issue of autoimmune diseases, with emphasis on healthcare disparities, mental health and women.
I will conduct writing workshops in underserved communities in the Seattle area with kids living with AI diseases and their caregivers. I will also provide writing workshops for scientists and medical providers researching and caring for those with AI diseases. I’ll use their writings in the book in addition to non-fiction essays and poems by others and myself.
I am the curator, editor, and producer of this book, as well as one of the contributors.
If this project is of interest to you, as a funder or participant, please contact me here, or email@example.com.
The Wong-Baker FACES scale has been in existence since 1983. Research was conducted on what sort of scales children and adolescents preferred and this one, with faces, won out. And while I’m sure it has helped many a physician to understand the levels of what children may be feeling at any given moment in their office, it also feels inadequate to the varieties of pain they may experience (and we parents, observe).
In my own experience as a the mother of a child with a rare autoimmune disease that effected her muscles and skin and required years of hospital infusions, injections of chemotherapy drugs and several other medicines, including steroids, and as a former mental health counselor, I have first hand knowledge of the complicated nature of “pain.” In addition, I have spoken to, and worked with many parents over the past 15 years who also have children with chronic physical and mental illnesses and it has become apparent to me that the pain scales used in both adult and children’s medical care just scratch the surface of realities.
In this light I have written several poems about pain and our bodies. One of them was recently published in HEAL, a medical humanities journal out of Florida State University. My poem, “Scaling Pain” is among other essays, photos, visual art and poems.
In my chapbook, The Body Lives Its Undoing, I also have a poem, “Pain, On a Scale of 1-10” first published in SWWIM Every Day online, that looks at a variety of painful experiences, including psychic and existential ones.
Especially now, in the year(s) of COVID-19, pain comes in many forms. I hope we can continue to push our knowledge forward of the relationships between mental, spiritual, and physical health. And though peace (peace of mind and body) may not be the goal for everyone, this quote from Pema Chodron, a Buddhist teacher, from her book, When Things Fall Apart:Heart Advice for Difficult Times, helps me a lot when I am in the thick of pain.
“When we are training in the art of peace, we are not given any promises that, because of our noble intentions, everything will be okay. In fact, there are no promises of fruition at all. Instead, we are encouraged to simply look deeply at joy and sorrow, at laughing and crying, at hoping and fearing, at all that lives and dies. We learn that what truly heals is gratitude and tenderness.”