The Indian Express | 1 week ago | 18-03-2023 | 12:45 pm
Ethan Sisser had stage-four brain cancer. One of his last sights was the scenic ridge tops of the Southern Appalachian – Blue Ridge Mountains of Asheville, North Carolina. On April 2, 2021, the 36-year-old breathed his last. Between waves of an unbowed pandemic, Sisser could have died alone, had it not been for his dying wish – he wanted a movie made of his last day, “leaving his body” surrounded by a “community”.On social media, Sisser was already documenting his life from a hospital room. One such clip reached hospice doctor Aditi Sethi, a Chandigarh-born, second-generation Indian-American, settled in Asheville. Sethi who till then had been part of the western medical model says, “death is put in the hands of medical professionals and considered a medical event.” The big shift in this came with Sisser, she says. “We need to learn new ways of engaging with death”.Sisser was finally wheeled into a quiet home in Asheville after the Hospice facility declined his dying wish, “His body was getting weaker but his heart, spirit and soul were getting stronger. He looked at death as a beautiful perspective of life. It made me realise death can be a whole different experience. It doesn’t need to be lonely,” says 42-year old Sethi.In two weeks, Sethi got it all in place, to form that community that Sisser desired. His parents were by his side, incense in the air, healers were on shifts, music, conversations and cameras were all ready to document his transition. This is now an upcoming movie The Last Ecstatic Days, produced by Oscar-winner David Seidler, Emmy-winner Tommy Pallotta, The New York Times writer Dr. Jessica Zitter and directed by Scott Kirschenbaum.Ethan, a Jewish-American practising and teaching yoga, was diagnosed with brain cancer in October 2019. Through his live streaming, he pivoted conversations around the curiosity about death. Each of his clips was joyful, attacking everyday pain with humour and always ended with him signing off: “I am Embodied. I am Empowered. I am Ecstatic”. His clips soon found a community of followers across the globe, many who were themselves tackling the death of their loved ones in Covid wards.For Sethi, the idea of ”death being the teacher” had become clear since a young age. She was seven when she lost her friend’s mother to breast cancer. “When I found out she died, I remember thinking, what do you mean she died? Where does that love, compassion and kindness go? So I wept, but no one talked about it after that,” she says. Even now, she says, we are taught to mourn, but we are not prepared to face actual days of death, of dying.In the decades, first as a volunteer — and then as a doctor at Hospice herself, she has seen it all. “Surprisingly there were very few requests that we couldn’t meet. But medical cultures don’t allow room for individual expression, for an individual way of being or dying. Ethan’s not a selfish wish, not like he wanted to travel and sit on the beach or go and party. He believed it was for the good of humanity,” says Sethi.Sisser’s clips have him speaking straight to the camera and accepting the limitations of being human. “What really struck me when I saw Ethan was his willingness to be vulnerable. If I had a massive skin flap on my head and if part of my skull was removed, I would be so self conscious, but he was so vulnerable, so willing to be with all his emotions. He cried in front of the camera, wept, loved, laughed and suffered. He showed us pain. He wasn’t shy. All this encompasses all our human emotions. From sorrow to joy, from grief to love, so, why do we hide from each other. Why do we pretend everything is okay?To be seen is actually a gift,” says Sethi, “Vulnerability is actually powerful, and in engaging with it, it will help us all.”As the makers of the hour-long film are ready to release the film internationally in summer of 2023, Sethi hopes there will be parallel conversations on future ways of handling death, should another pandemic take shape. “Of course, we have to look at minimising risks but we still need to honour lives. The hope is there will be conversations on other alternatives to dying alone. It doesn’t always need to be a medical event,” says Sethi, mindful of the many sterile passing she witnessed during the pandemic.With Sister’s dying, Sethi has seen her role expanding, of being “a bridge for the medical model and the community-supported, end-of-life model”. She initiated her non-profit, Centre for Conscious Living and Dying, in Asheville.While the West has a lot to learn from India, Sethi cautions for a change. “Even in India, if one has means, many die on ventilators,” she says, sharing anecdotes of families seeking medical interventions even against the patient’s wish at times. “We need to create opportunities for a world where you are encouraged to die in a way reflecting how you lived. So if you are a deeply spiritual person, and love incense sticks, why would you want to leave the world behind sterile curtains in hospital smells. There is something to look at and explore. We need to have conversations on how we want to leave this world?” says Sethi.
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