In her debut poetry collection, Therese Estacion shows what it means to bear witness to one's own pain and sexuality, to find catharsis and self-love, after a rare infection stole her limbs but not her life.
Estacion uses Filipino horror and folk tales, writing of mermen, gnomes and ogres — all haunts of childhood stories she grew up hearing in the Philippines.
While living in Yellowknife, N.W.T., Estacion wrote and edited her poetry about losing her legs below the knees, several fingers, and her reproductive organs to a bacteria called fusobacterium necrophorum.
The illness is rare. Just under three people in a million will get it — and for those who do, just 20 per cent will survive.
Estacion takes her audience through the monotony of recovery: a sponge wash, bingo at the rehab hospital, blood thinners, "gangrene pus skin oozes between good skin and hard mummy fingertips," a new nurse each day, sometimes a mean one, fingers falling off, the smell of iodine.
She explores themes of disability, grief and life in a surrealist fashion, travelling across geographies and writing in a combination of English and Visayan, the language of Cebu, where her mother is from, and of her father's small home town of Guihulngan.
Much of the book was written between Yellowknife, where Estacion became involved in the poetry community, and Mississauga, Ontario, where her parents live.
In Yellowknife, she read her poems in public for the first time, at open mic nights at the Top Knight. She also published works on ableism and finding belonging in our Northern town.
"The North provided me the quietude I needed to write these poems that were so difficult to write … and [gave] me confidence and the ability to share my work," she said.
Folk tales a buffer for difficult emotions
In one of her favourite poems, Aswang, a shape-shifting creature, haunts a disco. Aswang has become something of a feminist icon within the Filipinx diasporic community, she said.
"It was really uncomfortable for me to write about myself and what had happened to me. I thought if I hid it within this narrative of a folktale or cautionary tale, it was more acceptable to me," she said.
"Primarily I needed to sublimate my feelings and my friend, the pain I was feeling at the time," she said.
Estacion grew up in the Philippines and at recess, she would swap stories with her friends about the White Lady, Duwendes and Agta.
"I like cautionary tales. I like things that are a bit more macabre and I had an aunt who knew a lot of these stories," she said. "My mom was very religious, so she wouldn't tell me these stories."
Northern poetry community a space to grow
Estacion found the "open space" to edit and write a significant portion of her poetry collection in the North.
"Some poems are really tough. Some poems, I would basically write them and cry at the same time," she said.
"The land ... the sense of relief and relaxation the North offers, especially when the whole place is covered in snow, [and] the sun is shining ... after writing these poems, I would go out and I would feel good again," she said.
'More capable than able-bodied folks see us'
While her experiences in Yellowknife pushed her to write, Estacion also faced discrimination.
While seeking employment in Yellowknife, she was once denied because a store owner did not think Estacion could type.
"It was very painful to be discounted and discriminated like this.… In a way, I hope this book lets able-bodied people who perhaps have a very archaic sense of what a disable person can do, [get] a fresh new perspective and open up their hearts and minds."
Estacion says her book is a form of resistance to these harmful beliefs.
The disabled community is "full of talented people that know how to make art full of sensuality," she said.
Phantompains will also be released as an audio book and in Braille.
Estacion also hopes people from the medical profession will read the book, "to get a better sense of how to treat patients, and [to] know that surgeries are a really big deal and they don't end once the surgery is done."
The book gave her a sense of purpose, she said, "like 'I have something to do here and I've gotta do it so … you better stick around.' It gave me purpose and hope."