In 2015 I arrived at a massive sharehouse, built in the late 1800s, that had been charmingly obliterated over 130 years. The backyard was lined with small rooms mostly used for studios or storage spaces, one of which had been unconvincingly converted into a bedroom. Which I was applying for. According to the neighbourhood lore, the little sheds were originally halfway houses for Italian and Greek immigrants migrating to Australia during the 30 and 40s. In the 2010s, Weston Street was home to a revolving cast of gentle freaks, scientists and twee artists. I brought fresh herbs that I stole from my neighbour’s garden and some zines of my own to help seal the deal.
Ben Landau and French ceramicist/ artist, Lucile Sciallano, were among the twee freaks. The two were partners, romantically, domestically and artistically. Their generosity struck me. They quickly took to offering me lifts to and from hospital appointments, where I was managing Cystic Fibrosis, a life threatening lung illness brought about by a rare genetic mutation. Incapable of accepting a favour, I declined for the first few years. By 2020 Ben and Lucile had moved out, a plague was creeping across the ocean, and I was confined to my bedroom for 24 hours a day in an attempt to avoid it. Afraid of the world, glued to my phone, intent on escape-in-place at all costs (my sanity mainly), I came to miss Lucile and Ben’s kindness and frenetic love with a persistent ache in my chest.
When Australia’s COVID lockdowns began, I clung to whatever authority I could feign over illness and aloneness.
Imagining the pain of frequent hospitalisation gave me a sense of comfort. A lifetime of alienation from my peers and reluctant obsession with death had turned me into some kind of stoic mutant, able to see in the metaphorical dark. It felt good to say that I had been preparing for this my whole life, whether or not it was true.
I painfully moved twice during COVID, spurred by tragedy. First a messy break up. Second the death of my friend and sister-in-law, Kat — beautiful wife to my now widowed sister Charlotte. I had been reminded how little I actually knew about illness and death, their endless configurations. One summery morning between lockdowns, I received the call informing me that Ben had stage four cancer.
In the previous year a slew of articles had been released about how boring the apocalypse was. The mundanity of life in survival mode is old news to someone who grew up on the wards. But watching Ben grapple with the boringness of illness led me to reflect that I didn’t remember this particular row of my life that well. I remembered the boredom, not how I acclimatised to it.
I used to joke that some fuckers just needed to get a little cancer to fix their broken, “normo” worldview. While people were coming to terms with the pandemic, Ben and Lucile were deciding how to tell their friends and family the hopeless prognosis they had received. Ben was physically diminishing more and more everyday, which only accentuated his excited, dumb smile. It struck me how incomplete and unkind my sentiment about wishing cancer on the world had been.
With similar arrogance, I imagined all of the disabled wisdom I would minister unto him about finding solace in my firm belief that disabled trauma was a crucible for a new internal world. One that could help you shed repressive ideas of self. Just as my edgelord joke was undone, my assumptions about the hierarchy of pain were revealed to be two-dimensional. When Ben was resting on my shoulder, both of us crying, me onto his recently bald head and him onto my t-shirt, all I could do was listen.
The frustration of seeing COVID deniers attending anti-lockdown protests, getting COVID, suffering long COVID, and then becoming members of the community they endangered was a hot topic among us online cripples. There was even more talk of the irony of people dying from COVID after denying its existence. Ben lost his life to an illness that initially appeared as an upset stomach, something most people would attempt to sleep off. What was there to learn from someone who had fallen into illness instead of having been born to it like me? In the months since lockdown ended, for better or worse, were we all trying to sleep off the terrible transformation that had begun inside us?
At his 37th birthday, Ben gathered us in his backyard and read a speech he had written for all of us. The treatments had stopped working, the cancer was spreading to his liver, lungs and brain. Ben was going to die and he wanted to be in charge of when that was, applying for assisted dying (sadly Ben had lost his right to this process when he started showing signs of cognitive degeneration). In his speech he talked about the injustice of dying so young and the further injustice of having to entertain polite conversation along the way. He asked us to be honest with ourselves and with him. He wanted us to tell him what we were feeling as we watched him die.
So we did, one by one, painfully and joyfully.
Facing the reality of Ben’s impending death, I was drawn back to a quote by disabled activist and author Eli Claire in their book Brilliant Imperfection: Grappling with Cure: “Cure dismisses resilience, survival, the spider web of fractures, cracks and seams. Its promises hold power precisely because none of us want to be broken. But I’m curious: what might happen if we were to accept, claim, embrace our brokenness?”
Ben Landau died at 37 on February 26th, 2022, just an hour before I was to arrive at his house. I wanted to read him a send off I had written. A line in the undelivered letter, which I hadn’t revisited until I began writing this article, says: “Somewhere i my mind is every crack in the foundations of our home in Weston street, and the light of every hour of everyday, spent there with you, still burns.”
In order to fulfil Ben’s final wishes after he died, Lucile began a journey that served as a meditation on their life together. She endeavoured on a two-week hike with a rotation of friends, travelling 220 km from Cobboboonee Camp to Portland, Victoria. In a conversation during her visit to my hospital bed, she revealed that she would frequently take Ben, housed in a standard pastel blue polymer urn, and be with him. She would set her things somewhere dry, then both of them would go sit by a river, or among the seaberry saltbush and the prickly tea trees, native to what’s known as the Great South West Walk. Away from others, she would talk aloud to Ben’s ashes.
In her book Trauma Magic, Clementine Morrigan identifies trauma as an “active strategy of resistance,” asserting that “When we turn towards the possibility of trauma, we face both its staggering loss and its rich potential. We grieve what is lost and we love what is here.” This is how I internalized this ceremony. Ben left us with the possibilities hidden in life beyond him, all we had to do was find a way to accept.
At the culmination of Lucile’s great walk, we gathered on the gusty, secluded beach where Ben proposed. A close mutual friend drove me as close to the shore as we could get to accommodate my sick body. I just managed to carry a teapot and a bag down to the beach. I scanned around for anything to help me begin digging a hole to build a fire in. I dug deep into the compacted, freezing sand with a large shell I had found near some seagulls, taking breaks to catch my breath. When the first member of the walking party arrived, he went to work digging with another shell alongside me without a word. Soon about 15 people were silently going about this final acceptance.
Lucile winced as she removed her shoes to reveal a litany of blisters and bandages from the weeks of walking. She heated a knife over the flames and cut a burning triangle into Ben’s container. She removed a ceramic vase, only fired once, from a large cardboard box. Ben’s family, Lucile included, took turns gently pouring him into the unfinished ceramic. Lucile stripped down to her swimsuit and walked Ben to the ocean and sat with him one last time. Ben’s mother, father and sister joined her.
As they entered the sea the sky opened up. Rain arrived in harsh torrents, belting us. My clothes were soaked through. By the dwindling fire I watched the Landaus, all so tiny and splashing in the waves. They lowered Ben into the ocean, dissolving quickly in the undulation of the tide. We watched in gratitude, crying at first, then laughing.
When the last Landau stepped from the ocean, as if put on fast forward, the clouds parted to reveal a rainbow behind us over the hill, engraved in the sky. It lingered for a moment before being swept away. Once we had all turned to see the radiant arch and watch it go, our backs warmed as the sun was also freed of the quick moving clouds.
I can’t forget how Ben looked the day I met him any more than I can erase the memory of how vacant he looked the day he died. Those recollections now form an important part of me. When I look back on what illness, death, Ben and the pandemic has taught me I see that I’m still reliving those lessons, still drawing meaning from them, whether or not I’m entirely aware of it.
Illness taught me that my mutation is my strength as much as it is my weakness. Death taught me that we should fight for how we want to spend our lives, since nothing else will ever matter as much as that. Ben taught me that love means presence and acceptance. The pandemic is teaching me the pain we suffered, the mutation we now share, is the reclamation of our life in plague times. We must turn towards what we have learned about compassion, loss, isolation and community in order to make meaning of the last two years. We have to carry it with us like Lucile carried Ben, talk to it, celebrate it and lovingly mourn it, right to its face.
Grant Ionatán (fka HTMLflowers) is an American Australian Cartoonist, living and working in Melbourne, Aus. When he’s not working on his longform autofiction series about living with an incurable illness, No Visitors, he’s writing jokes for Simon Hanselmann’s Megg and Mogg or writing and drawing entire episodes of Werewolf Jones and Sons. He’s been published in big magazines and tiny zines and online and blahblahblah, you get it.
Photography by Atong Atem.
