Paola Peretti is losing her eyesight and she wouldn’t have it any other way. When she was 14, she became very short-sighted, virtually overnight. Three years later came the diagnosis of Stargardt macular dystrophy, a degenerative disease that destroys central vision, damages colour perception and results in blindness. Two years ago, finding herself in a place of both “desperation and hope,” the 32-year-old Italian language teacher and debut novelist decided to step out from the shadow of her hereditary condition, which she only ever aired with her family, and confront her fear of the dark.
The Distance Between Me and the Cherry Tree is the result: a captivating, wise and highly visual children’s novel about living in the face of fear. Its heroine, nine-year-old Mafalda, also has Stargardt disease. A bewitching, brave little girl, she will lose her sight completely within six months, as Peretti was expecting to do at some unspecified point in her own life when she began the novel.
The eponymous cherry tree is next to Mafalda’s school. Each day, she has to get closer to it before it comes into focus. As her short-sightedness increases, so does her fear of the future. “She is losing her life as she knows it,” says Peretti, who explains that she herself can see “half of what other people see”. Mafalda has blank patches in both eyes, and they get bigger. Peretti has a blank patch in her right eye. I am seated a couple of feet from her as we talk in her publisher’s office. She says I am partially blurred.
The cherry tree “represents the place of the imagination,” says Peretti, “and hopes, dreams, memories”. In a deliberate conflation of gender stereotypes and of what is expected of disability, she makes Mafalda a keen tree climber. As her known world is eroded, she seeks out her constant, kindly tree.
She runs away from home and moves into an uppermost branch. Then, once the novelty has worn off, she is afraid of staying and afraid of climbing down. “She must make a decision,” says Peretti. It is a long jump down and Mafalda cannot fathom the distance. Her guide is Estella, the school’s Romanian caretaker and her North Star. Estella knows a thing or two about fear herself. “To live in fear,” she tells her young friend, “is not to live at all.” Early on, she sets Mafalda off on a quest to identify her “essential thing” before her time in the light runs out. Mafalda, unsure what this means, settles on: “a thing is essential only if you need it to live”.
Peretti, who lives in Verona, where she grew up with her factory-worker parents in a home filled with books and music, could not have identified her own “essential thing” when she began the novel. She had just emerged from “a very, very difficult divorce”, a “lucky thing”, she says now, because it taught her that “I am the owner of my own life.” She had been teaching Italian to refugee children from all over the world. “Some of the girls had terrible situations, plus they couldn’t communicate and were in a foreign place where they were not accepted. But they were very strong. I learned from them about resilience: that it is innate, but that we have to draw it out from somewhere deep inside us, usually when we go through difficulties.”
Through the book, which is a mixture of fiction and autobiography, Peretti set out to “encourage children to be brave” and to teach girls, in particular, to reach for the stars. “The cherry tree is about aspirations.” But halfway through, she realised that uncertainty and fear were holding her back in her own life so “in every chapter, I dealt with something that frightened me. In order to finish a chapter, I had to find a solution. Each chapter was easier than the one before. I felt braver. It was like therapy.”
Writing the last chapter was the hardest. “I wanted Mafalda to jump down, but I also thought, maybe she should stay up in the tree. If I didn’t decide to make Mafalda jump, my own acceptance process wouldn’t be complete. It was very hard, but when I jumped down,” she continues, segueing into the first person, “it was wonderful. Now I have nothing to hide, to worry about. This is reality, this is my life – we all have to live our lives with whatever we have.”
Before, says Peretti, she was “very scared of showing people I had a disability. For a long time, I tried to be better than a ‘normal’ person. It was stupid. Now I know that we are all different, and we only have to be ourselves. I am this way: a writer, a woman, a person with a disability.”
Like a child afraid of the dark, the unknown filled her with dread. “Now I know that no one can control the future. We don’t know what will happen tomorrow.”
For Mafalda, a keen goalie, letting in a goal because she doesn’t even see the ball coming and being ditched by her oldest friend, are particularly unexpected. Without self-pity she crosses “having a best friend” off her list of essential things. “I thought, for a long time,” says Peretti, reflecting on her own attempts to suppress her need for human connection, “that it was very hard for other people to be close to someone with a disability, or problems in general. But it wasn’t hard for me to be with marginalised refugee children. It’s not hard to be with someone who needs help.
“Being lonely was a great fear of Mafalda’s, and of mine. It is a sort of death, being lonely. Finding a true friend, a real friend, is the most important thing for Mafalda – and for me as well.”
Writing is her other “essential”, above sight. “I don’t know how other people see,” she says, laughing, “but I do know that other people are slaves of advertising billboards and I am not. If I saw, everything would be clear,” and she waves her long pianist’s fingers around the room. “To see details would be very dramatic.”
I ask if she can remember what it was to see. “I have memories of all of my childhood, but I can’t remember my vision. Only that I could see everything, like other children. I had 20-20 vision.
“I remember when I went to the sea with my parents. I could see the sun, far away, on the water, on the waves. The ships were in the distance.”
The structure of the book has given her a template for life: she encounters a problem, she finds the solution. “When I need to, I say to people, ‘I have this problem, please help me.’ I have been wondering why I didn’t ask for help before.” Determined to learn English in order to promote her book, she applied to study at a language school in Brighton. “I had to do a test and I couldn’t read the questions,” she recalls. “I took a picture of the test, then I magnified it on my tablet. It was simple.” It reminds me of Mafalda and Estella, I suggest, and their mantra: “Never, ever give up.” “Yes,” says Peretti, her whole face lighting up, “Never give up.”
Peretti lives alone, “and I am very good at living alone”. But her independence gives her parents the jitters. “They are the last two people who see me as a person with a disability. They are terrified for me.” Because of them, she says, “a little piece of me continues to see me as they see me. They try to protect me. I try to protect them – from the seriousness of my disease. I joke about it if I fall or do something wrong.
“When you lose your sight, you can feel more with the other senses – I’ve always played the piano, and I improvise now that I cannot read the sheet music. Sometimes I feel the music on my face.
“Through our hands, we can understand everything. An object. What people feel. I think people with a disability have a sixth sense” – what Mafalda calls her “third eye”. “I see with my hands. It’s like having two alternative eyes. I can imagine a story, write it like I see it. I wrote the book like a film, scene by scene. When I am writing, I like to hear the sound of the keys: it is like listening to your own stream of consciousness.”
Two months into writing the book, Peretti was told that the disease had arrested. “It is good news.” But, she says, “I was pleased I only found out then, because I had to be desperate for the book to be written.
“When I was younger, I was scared of the dark. Now I am not worried because I can write. I used to think, if only researchers and doctors could find a cure.” The book has changed that. “I really like my life. I am not ready to change it. I am who I am now, thanks to the disease. It would be strange to be cured.”
The Distance Between Me and the Cherry Tree by Paola Peretti is published by Hot Key Books at £6.99. Order it for £5.94 from guardianbookshop.com
