Name: Nara Fernandes Lucio
Age: 27 years old.
Where do you call home? I was born in Patos, a small town in the State of Paraiba, Northeast of Brazil.
Education: I have a master's degree in Psychology and right now, I am halfway through a Ph.D. in the same field. My plan is to have an academic career.
What is a typical day for you? I live in one city and go to school in another one. I have no choice other than being very flexible regarding schedules and routines. Usually, on Fridays, I meet my research advisor. On Tuesdays and Thursdays, I am busy with classes and group meetings. Monday and Wednesday mornings are dedicated to physical therapy.
How long have you known you are living with FA? It's been ten years since I was diagnosed. I was 16-17 years old and a high school student. The movie about Stephen Hawking, "The Story of Everything," mimicked my initial unexplained motor-control loss. I always think that my first "encounters" with FA were similar to what is shown at the beginning of a movie. Although the diagnoses and situations were different, Stephen Hawking had a diagnosis of ALS and my eventual diagnosis FA, the awkward ways of dancing, walking with an imbalance and frequent falls clued me into a problem. Initially, some doctors said my imbalance was caused by scoliosis.
Are there any others with FA in your family? I am the only one in my family.
Describe your transition from walking to walker/wheelchair. I started using the wheelchair more often. For me, the transition was a mix of anxiety and a sense of freedom. Like many people, I thought that the wheelchair was a prison until I found out that it brought me independence and allowed me to go to many places on my own. I need to have moments when I feel alone and independent. My moments of anxiety always happened when I met other people. The way they looked at me, the hidden pity, the questions, all of that made me uncomfortable and anxious about their reactions. It took me a while to learn how to deal with situations like that and to understand which things and behaviors I could change or be beyond my reach to change. In physical terms, my transition hasn't finished yet (lol). I am not confident enough about transferring, going downhill and other things like that. But I know that I can take courses to improve these abilities and I intend to take them.
What do you like to do to stay active and what type of exercises work for you to stay strong? I have been a vegetarian for almost a year and think that I gained more energy since I stopped eating animal proteins. I also do exercises for muscle strengthening and stretching, along with coordination training twice a week. The difference between the days I work out and the ones I don't are very noticeable.
Do you have any hobbies or special interests? I love reading, movies/TV series, Brazilian soccer and samba. The beat of a Brazilian drum goes straight to my heart and soothes all my illnesses.
When FA gets you down, what do you think/do to feel better? In those moments, I look at the ocean, to the horizon at the end of water and listen to joyful music. I tell myself: "This is going to pass, pain is part of life and there are better things coming up."
What is one way living with FA has POSITIVELY affected your life? My relationship with friends, my partner and my family - we are all very close and they are my joy in life.
What is a favorite motivational quote of yours? There is a song from the Brazilian musician Gilberto Gil that resonates inside me: "Faith is in the tides, on the edge of a blade, in the bright and in the dark...It is always with you even when you think you don't have it".
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Live one day at a time. Each body is unique and singular. You can imagine your own cure, say you feel you were cured, feel whatever you feel, no matter what other people say.
What is the first thing you want to do when a cure/treatment to FA is found? When a cure comes up, I want to run along the beach and jump into the water with nobody around me.
"I have FA, but FA doesn't have me" What does this statement mean to you? To me, it means that I am more, much more, than a diagnosis. No disease is ever going to define me. I set my own limits. That's how I see FA.
Tell us a little more about you... I live in the northeast of Brazil and am an ardent fan of the Flamengo soccer team. I love to cook, listen to music and travel. I also enjoy my scientific studies and research. I am focused on youth conflicts with law and also about the participation of young women from my home state in drug trafficking. My approach to these studies is based on the dialectical materialism theory. I also enjoy analog photography. (Editor's Note: Analogue Photography; refers to photography using an analog camera and film. A roll of film is loaded into the camera and the magic begins once you start clicking: light interacts with the chemicals in the film and an image is recorded). The whole process teaches me a lot: to be patient to wait for "that" moment, to live with the small pains of veiled films and to be thankful for having lived special moments only engraved in my own memory. The process of developing a film is a way of re-playing slowly every color and every day. I always want more days and more photos.
The interview was conducted in Portuguese and translated into English.
