Name: Silvany Guimarães Coelho Cotting
Age: 54
Where do you call home? I live in Petrolina, Pernambuco, in the northeast of Brazil.
Education/Career: I have a degree in Literature and specialized in Linguistics (regional languages/dialects).
Who do you live with? I spend my days at home. I start the day doing my personal hygiene and having breakfast. After that, I start my workout and therapies (physical therapy and occupational therapy). Then I supervise what has to be done at home and guide the helper with the day-to-day chores. There is also some time reserved to take a look at the plants, to check social media and answer my friend’s messages.
How long have you known you are living with FA? I have had the symptoms for 33 years, but I was only diagnosed with FA 16 years ago, when I was 38 years old.
Are there any others with FA in your family? No! I usually say that I was the lone draw in a huge jackpot.
Describe your transition from walking to walker/wheelchair. My first stage was to hold on to the walls, furniture and people for 12 years . Then only a walker for 10 years, followed by 5 years using both a walker and chair for large spaces. For the past 6 years I have been totally dependent on a wheelchair.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do balance and breathing exercises and I train my hands for fine movements. I’ve been doing this for 30 years without even knowing I had FA.
Do you have any hobbies or special interests? I have always liked plants and currently deepen my knowledge in medicinal plants. When I was very young I used to say that I wanted to be a leaf engineer…
What is a good trick to make daily life easier? I try not to allow my limitations to affect me emotionally, so I don’t think much about the future. I am always smiling; people say that my smile is my trademark.
When FA gets you down, what do you think/do to feel better? I listen to music, do crossword puzzles or try to spend some time alone. I love to be by myself!
What is one way living with FA has POSITIVELY affected your life? I think that the fact that I am always up to date with news to fight the disease is a positive effect.
What is a favorite motivational quote of yours? I don’t have a quote, but I think that to live calm, at peace, serene, and constantly learning and updating myself in search of improvements is very motivating.
What is a piece of advice that someone with FA has given you that encourages and inspires you? Don’t worry about what other people say or think about you. After all, no one is perfect! There are many people with worse syndromes than mine. I have nothing to be afraid of or ashamed of. I keep moving on.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Never lose your faith, courage, patience and the ability to accept things as they are. God only gives heavy burdens to the ones who can carry them! This means accepting the situation, not conforming, because conforming means giving up while accepting means putting a comma, a pause, in your circumstance. When you accept the burden, surely life becomes lighter. We always have to look for alternatives to have a better quality of life, since there is still no cure.
What is the first thing you want to do when a cure/treatment is found? I want to thank God and then walk hand in hand with a child. I had two children but never did that because I never had balance. It may seem meaningless to many, but it has immeasurable value to me!
“I have FA but FA doesn’t have me.” What does this statement mean to you? How do you live your life in the face of adversity? This means that we have to be always strong and determined to fight the disease. When you wake up, remember that you have a daily challenge every day and that it is up to you to continue to fight it or not!
Tell us a little more about you… I am a not-so-old retired lady, a little vain, with a gigantic and curious memory. I like to be constantly learning new things. I am passionate about life, plants and animals, especially pets.
Interview by
Natache Iamaya Gomez