Name: My name is Talia Rodrigues Medeiros.
Age: I'm 24 years old.
Where do you call home? In the interior of Goiás, a town with few inhabitants called Gouvelândia.
Education (degree(s): My schooling is higher education, I have 2 degrees, in Law and in Pedagogy, where I had to go to another city many times without accessibility or comfort. I seek a specialization and work in Law. I see a contribution from AF in the possibility that I gained in putting myself in the place of others. Acting with excellence, I can contribute to the defense of the wronged and the formation of children in order not to see disability in a pejorative and restrictive way. As well as starting accessibility in a city where this is not common, in a state that is still retrograde and in a country that is still prejudiced.
Who do you live with? I have been in a stable relationship for two years and I live with my partner and pets.
What's a typical day for you? I wake up at 6:20 am, my mother comes to my house, helps me with organizing things for work, we go to work (we work in the same place), I return home at 11:15 am. My husband helps me with the medication and does the lunch for us. He puts me to bed, where I rest until 2 pm and start studying and work for extra income. I stay with my pets in my room until my partner arrives and helps me get dressed to go to the gym, around at 5:30 pm. I go to the gym but I first go to my parents' house to see my father who has early Alzheimer's and he is in the last stage of the disease. At 7:00 pm I leave the gym and I go to my mother’s house to take care of my social project for feeding animals that live on the street. I take a shower there and go back to my house at 20:00, more or less. When I get home, I feed my animals and take care of my collection of plants. At 10pm I have dinner, drink medicine and go to bed watching TV until I sleep.
How long have you known you are living with FA? About 12 years old.
Are there any others with FA in your family? Yes. As I have several cousins and cousins who had, but who are no longer alive (a generation above mine) and who, due to the time in which they lived, there was no exam, they were not confirmed and properly instructed.
Describe your transition from walking to walker/wheelchair. I was in college and I wanted to participate with my friends in the activities, and the wheelchair was actually liberating since with it it was possible for me to be present in the activities, always accompanied and with difficulty in interactions but physically present, seeing, following, interacting and deciding. The transition was my choice due to my need to follow the evolution of my life. I had full support from health professionals who congratulated me for the free decision. My mother was resistant and against it at first, but seeing the positive impact, she saw that I made the best choice for me.
What do you like to do to stay active and what type of exercises work for you to stay strong? I like to keep in touch with people and be always present in society, so weight training in a regular gym works very well for me.
Do you have any hobbies or special interests? I love animals and it has always pleased me but I see it as part of me so I believe it's better to classify the interest in roses and plants as my Hobby.
What is a good trick to make daily life easier? There are several but I believe that the best thing is to keep myself socially active and always ready for the new.
When FA gets you down, what do you think/do to feel better? I think how much it evolves and how each moment will surely contribute an hour! I'm not strong because I've never fallen, I'm strong because I'm never on the ground. I'm not the one who controls the disease but I'm the one who controls how I'm going to react to it. I like to read Philosophy and think philosophically about life.
What is one way living with FA has POSITIVELY affected your life? I believe that I still have a lot to learn, but I see that today I am more centered and a realistic person and as I observe a lot, I plan and analyze more, and of course I reflect. The way of seeing what is different for my reality has also changed and made me develop more empathy and solidarity with causes, even if different from mine, but with present prejudices. Today I feel free to be and think in my own way.
What is a favorite motivational quote of yours? One that I always repeat, “fragile body and strong mind.”
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Live each day at a time, don't suffer in advance and proceed calmly, because even if slowly you arrive at the same place.
"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? That she is part of me, but she is not all that I am, she is just a part.
Tell us a little more about you… I am an extremely communicative person and open to adventures and to life! I practically had an ordinary social life, I went to parties, I dated… I always had a lot of stories to tell and people liked to hear it. I understood some things in life very early on, which made me very mature. I like the diferente, and simple and natural things impress me. I am passionate about life and people, the complexity of the mind and body makes me obsessed with the precision of the human being. I really enjoy studying and the possibility of always learning something new.