‘TI SI WHAT TI SI’ by Paola Roldán

Ecuadorian activist Paola Roldán Espinosa, known as Paola Roldán, wrote her memoir TI SI WHAT TI SI at the urging of her spouse Nicolás – Nicolás feared that, on his own, he would not be able to transmit the couple’s whole life story to their son Oliver. In 2020, having just turned 40 years old, Roldán was diagnosed with amyotrophic lateral sclerosis (ALS), a chronic degenerative illness with an average life expectancy of 3–5 years. Roldán lost her mobility and eventually became dependent on a respirator to remain alive. The writing process grew into a means of introspection and self-discovery for Roldán; as one of her social-media posts explains, the memoir allowed her to process experiences, reorganize stories, and recode memories. Roldán’s struggle with ALS is not, however, the only tribulation portrayed in the volume. The book opens with an account of Nicolás’s near-death experience after a motorcycle accident – an event that brought the couple together. In fact, the title of the memoir is another example of their turning a challenge into a serendipitous opportunity: while recovering from that accident and relearning to write, Nicolás misspelled the saying ‘It is what it is’. Nicolás’s being cared for by Roldán after his brush with death foreshadows Roldán’s own coping with mortality, with an inversion of the caregiving roles in the last part of the book. In between Nicolás’s and Roldán’s stories, there is the welcoming of their son Oliver, who, after Roldán’s trying pregnancy, was born in perfect health. The brief but dense book portrays external and internal journeys: from Roldán’s travelling the world in search of the meaning of sustainability to her digging deep within to learn from various physical illnesses. Without laying claim to ultimate truths nor subordinating the physical to the spiritual, the work narrates a fearless search for connections between body, mind, and spirit, transcending the memoir genre. Published in 2022, the book helped divulge Roldán’s plea for self-determination that culminated in her 2023 constitutional victory for her right to die.

The terms ‘euthanasia’ and ‘assisted death’ never appear in TI SI WHAT TI SI. The publication precedes the filing of Roldán’s 2023 constitutional appeal, in which she argued that euthanasia should not be deemed a crime in Ecuador. The book therefore does not cover that legislative saga. It did, however, become an essential part of Roldán’s communication campaign ‘por una vida y muerte digna’ (for a dignified life and death). The memoir triggered reviews, media articles, and interviews, in which the author voiced her case with nuance; as she told El País, hers was not a fight to die, but a fight to have, when our time comes, the ability to decide how and under what conditions to die. The book’s non-dogmatic spiritual facet makes it hard for critics to reduce it to an agenda. Roldán’s words and tone disarm people, inviting conversations about the complexities of end-of-life care. In a memorable radio interview with FM Mundo Live, when asked if she believed we should be grateful for everything life sends our way, Roldán replied that, in order to arrive at true gratitude, we should first acknowledge all other emotions. In Roldán’s video testimony during her constitutional hearing, she opens disarmingly by asking the audience for patience, as she must pause, every few words, to breathe. The sentence (No. 67-23-IN/24) that ratified Roldán’s appeal and decriminalized euthanasia in Ecuador mentions that the court received 100+ amicus briefs. Moreover, interest groups both for and against assisted dying have publicly commented on the case: the Derecho a Morir Dignamente Foundation underscored the importance of Roldán’s book to promote debate on euthanasia; the Americans United for Life, a pro-life organization that opposes both abortion and euthanasia, highlighted the dissenting opinions of 2 judges, who believed the Court was exceeding its powers by decriminalizing euthanasia before Congress passed any laws to regulate it. The print edition of TI SI WHAT TI SI sold out and an Amazon Kindle version has been made available. The memoir inspired the 2024 play Aquí pasa algo raro (Something strange is happening here), directed by Andrea Arboleda and Fernanda Vásquez Capelo, as well as the activism of Juan Secaira, a poet and artist who dialogued with Roldán and who works to raise ALS awareness.