My sleep schedule is supremely fucked up. It started with the multiple jet lag. But then in the Sisters Hope Home there are no clocks, i am dwelling in a continuous state of night, and they came up with a different numerical system…am actually laughing as i write these words. Like, seriously this place kicks ass. In a good way!…or so i thought at the beginning… well, it is good for those who enter and participate in Sisters Hope programming, but the Hedehusene community has been left far behind, and man oh man, they are pissed, hurt, sad, and scared. A loooooooooooooooot of restorative community building has to take place, initiated by Sisters Hope, or else i will join the Hedehusene folks and chase these fuckers out of this neighbourhood. Plans are in place. Will they respectfully follow through? This is my deepest wish. For everyone, because no one should be left behind, ever. Ever. Ever. Ever.

For the first three days during an inhabitation flow, had absolutely no clue what time it was and was walking around like a zombie who would burst into tears spontaneously. The first dinner, was so fucking moved by the love that you could taste in the preparation of the food that i openly wept at the table. Feel sorry for the other inhabitants, probably wondering what was wrong with that crazy asian. Cute and creepy. That’s my new slogan for all of Japan, think that it aptly describes the culture. Tourism Japan 2024! Peter Morin and i are going to make a PMAG episode (our children’s show) on our travels through Japan on that very theme.

The staff here works exceedingly hard. They hold the space with so much actual care, it has been inspiring to witness this experiment in alternative (universe) living, turning what otherwise would have been a superficial pantomime/carnival of sensuality into something profoundly moving, real, tangible, ingestible. I love each person — Timer, The Unnamed, Mortal, and Spreading Fire. These are their poetic names. We go through an exercise meditation where we are asked to choose our poetic names. Mine came to me right away: Grace.

Have been feeling Grace really close by. She was the baby i was chosen to mother in the Hospice for Children with AIDS Cottolengo Centre in Kenya. We bonded the moment i laid eyes on her. On the first day, when one of the sisters was showing me around the newborn-to-toddler room, all of the babies were sitting on gym mats on the floor. They were reaching for each other, looking around, curious—all except one: Grace. She looked absolutely petrified. I remember how she seemed to be shrinking into her oversized sweater. Without thinking, i reached for her and picked her up and when i did, she immediately clamped her heels around my waist. From that moment on, we were inseparable. Carried her around all day long while doing chores: laundry, dishwashing, sweeping and mopping, wall wiping, window washing, toilet and bath cleaning. Wah, did we, the staff, ever clean the shit out of that place. The hospice was immaculate and the children, healthy. But it took time to gain the trust of the staff.

For the first month, they completely ignored me. When i asked how to do something or where things belonged, they would walk by me as if i were a ghost. Kept coming back every day, goddamn trip from where i was home-staying in Nairobi to the centre took 2h one way. Would wake up at 5:30am, out of the house by 6:00am then three transfers on overcrowded matatus with RnB (some adrenaline/caffeine jacked remix of Return of the Mack on repeat!) blaring from their speakerphones, before walking the final 5km along Karen Road to the hospice.

I finally gained the trust of the staff when one day we were all feeding our babies. Up until then, Grace had very little appetite. Her body had been dealing with opportunistic infections, a yeast infection, to be more precise. I don’t know what it was about that day, maybe the stew was seasoned extra well?, but Grace started, like, gulping down massive spoonfuls of food. Her face leaned impatiently toward the spoon, unable to wait for the next bite. Her appetite returned with such a flourish that even though no one would talk to me, i said aloud, “holy, look at Grace. Look how much she’s eating!” Suddenly, Grace’s body began convulsing violently and i realised she was about to throw up. I carefully turned her body on her side so that she could vomit into my cupped out shirt and hand as i rubbed her tiny back with my other hand. I waited for her to finish, then took her to the bathroom, bathed her, and dressed her in freshly washed clothes. After that, the staff began to talk to me. 1997.

In Kenya back then, the virus was particularly virulent, people became violently ill with initial contact with HIV and their prognosis was very poor. Many died within a year or two. At the time — and i looked deeply into this while working on the HIV lesson plan in Ghana, and asked many AIDS researchers and specialists based in Nairobi — no one knew if the virus could be transmitted through vomit. No one knew if the virus could withstand the acidity of the stomach if encased in blood. When the other mothers eventually began talking to me, i asked them if they frequently got tested for the virus. They all responded, “why bother? Even if we are infected, nothing can be done about it.” One woman went on to say, “We just assume that we are HIV positive, because if we are too worried about becoming infected, then we can’t properly care for the children.” This comment changed my life. From that moment on, i too assumed i was infected. It was so important to make this assumption for the children. They had all been abandoned and found by community members and taken to the Centre.

Abandonment was such a profound trauma for them that were a staff member to fear touching a child with open, bleeding sores, the child would have been retraumatised. And that emotional strife would make them physically ill, life-threateningly so.

After hanging out with Sr. Schola in Ghana this December (Christmas with the sisters! woot woot!), will go to Kenya directly, a repetition of movement from so many years ago. There, will visit the Centre and specifically, Grace’s grave. I will wash it, as is customary (and i actively practice this) in Japanese grave visiting, and will return to Canada to begin creating a think tank in her name. You see, when Grace died about half a year after i had left the hospice, i made a promise to her to figure things out, to develop a more compassionate understanding of disease in relation to health so that future people would not have to suffer as she and so many others needlessly had done due to such a conceptually limited scientific framework. This is why i jumped into disability care work, being a nanny, daycare worker, cleaner, outdoor manual labourer, palliative carer… and performance art: to expand our conceptual understanding through the body and between bodies. This is why i will continue to do performative experimentations to develop complex, lived knowledge of the inbetweenness of beings.

It’s all for Grace. She held me up to a poetic self, a self that is a We rather than an I. My time in Japan, in the company of my evil cosmic twin, あゆみ (just kidding, but man, was she unhappy), and returning Great-Grandma to her homeland, has emboldened the drive to set up this think tank. Will go visit JP in New York to seek financial advice and see if he would consider working at this research centre. It’s a big ask.

When i lay awake and restless at night, i start imagining what the Centre would look like: artist-directed, process-based, art making space and money for materials, dreaming space, eating and hanging space, movement space, benefits for all regardless of full or part-time employment, four-day work week and project rather than hours-based, creative development days for staff, salaries 10% higher than associate professors in Canadian universities, scientists in residence (Rosi Waikhon as the first resident then maybe Emerson Munduruku?), rotating writers in residence (Juliane Okot Bitek, Cecily Nicholson…)… nonhierarchical. Japanese notion of mentorship though: 先輩・後輩.

This is the We that has been dreamed up so far… different modules or research areas: disability research and ethics (might approach jess sachse to see if they might be interested in heading that section); world indigenous knowledges (Peter is already up for it…in preparing the HIV lesson plan in Ghana, had worked closely with witch doctors to ensure that the plan did not devalue their expertise and practices); pedagogical interfacing (Ashok would be awesome at linking universities with the Centre, and just his very presence calms people, he is the heartbeat of any place he enters); art to science translation and conceptualization (this is for Ayu! the philosophizing of immunology…might need a poli-sci scholar here too, something specifically to do with gender-related violence and hope and the interrelations between domestic and political violence…and hope. don’t know who yet would best fill this position. perhaps Cec or Juliane? both are so busy, though…will keep thinking on this); mental wellness and creative care of the staff. was thinking about rotating this position so that the carers are also cared for. Zahra Komeylian would be wonderful in this role and perhaps eventually Aman…? only if he ventures on this path…; financial management and investment — absolutely JP. his knowledge of money is intergenerational and i don’t have a fucking clue about such things; Carol, to organize us and keep us on our respective tracks, can actually see her taking over should anything happen to me; Sae for reception and welcoming, and to help and learn from Carol; Juka, to make films, many many films and to document the work of the Centre…

Driven by their specific research and interests, my job will be to support and then curate/care for the ideas that emerge from their varied approaches and practices. Each person brilliant, deeply kind, shiny humans. With this crew, we can change microscopic and macroscopic worlds. I will approach each person properly, formally with a gift and with the understanding that some of you will respectfully decline. Regardless, it is just so reassuring knowing that you are in this world.

Respectfully,

Grace

[Above Photo: with Sister Scholastica Yiripare in Nsoatre, Bono Region, Ghana, 2011. Dearest Schola is one of my oldest, best of friends. In 1996, she along with two other locally organized HIV community groups approached me to create an HIV lesson plan relevant to the Upper West Region. We have been friends ever since.

Photo below: with Grace at the Cottolengo Centre, Kenya, 1997]