"I cannot force anyone to think about my death"

The trip three years ago to Mexico was meant to provide a different way of understanding death, but it didn't turn out as Nina Roma expected. While mother and daughter happily strolled among the graves, the father and brother wanted to leave because they weren't prepared to think about death. "I can't force anyone to think about death, let alone my own." This is how blunt the poet and speaker Nina Roma (Sant Cugat del Vallès, 1991) is, who was born with epidermolysis bullosa, a genetic disease popularly known as butterfly skin, which causes extreme skin fragility, and a simple bump or rub can cause wounds or blisters. It is a rare and incurable minority disease that affects about sixty people in Catalonia and just over 500 in Spain.

Nina describes herself as a person who has "the opportunity to live" and who does her best to live in the best possible way with what she has at her disposal. Naturally, she has a "quite intense" bond with her skin, but she is "exhausted" by the "battle and war" discourses against diseases. "I can't be fighting against my skin. It's also allowing me to live," she expresses. Although she found it harder to understand when she was little, she can now affirm that she loves her skin: "If you don't love your skin, which is part of yourself, what are you doing?"

Every morning she spends between one and two and a half hours on her care. Having butterfly skin means dedicating many hours to taking care of it. Currently, a 12-year-old boy from Seville, Leo, who also has butterfly skin, is receiving an innovative treatment. It is called Vyjuvek and it is the first time it has been administered in Spain. However, Roma points out that it is not a cure, but a therapy that can help to better heal wounds, reduce their reappearance in the short term, and decrease pain and the time spent on care.

Although Nina's schedules are different from those of other people and she dedicates a lot of time to self-care, she assures that she manages to do everything. She studied design, completed two postgraduate degrees in illustration, studied English at Oxford, in England, and a higher vocational training course in marketing that allowed her to do a five-month Erasmus in Holland, in the Netherlands. This February she traveled alone to Morocco, where she stayed for five days and even managed to do a desert route with the help of a guide. Despite everything, the Sant Cugat native states that her "most authentic self" is traveling alone and discovering the world. "The fact of being dependent makes me long for independence," she admits.

This year she learned that she is the oldest person with butterfly skin in Catalonia, but she warns that it is information she did not need to know. "I have always lived in voluntary innocence because not knowing helps me," she says. In fact, Roma recalls that she recently lost faith and hope in everything and insists that "it is necessary" because it makes you "see reality".

This year, together with her brother, her cousin, and Marta Bustos, she has launched the podcast "Discopacitades", a space where disability ceases to be taboo, always from humor. Nina Roma criticizes that people who talk about disability are people who precisely do not have any: "It's absurd." And this is where the idea for the project comes from. In addition, she also writes poetry because it allows her to express everything she keeps silent and feels, gives motivational talks, and is part of Cia Nostra, a company of poetry, theater, and music.

Roma thought a lot about where to go on her summer vacation this year. It was the last one before starting dialysis, which she just started this Tuesday because her illness, in the long term, also affects her kidneys. Finally, she chose the coast of Sorrento, in Italy. It always does well to "be able to return to a place where you know you are well." In fact, when she thinks about moments that bring her peace, she explains that one thing she often does is go to see the dawn by the sea. She confesses that she likes to go to the beach alone and watch the sun rise while having milk with biscuits: "It's a moment of mine, and no one will ever take that away from me."