Name: Maria Monteiro
Where do you call home? Trás-os-Montes and Alto Douro, Portugal
Education/Career: I work in Culture. I got a degree in Archeology and later a postgraduate degree in Museology, with specialization in Museums of the XXI Century. Being a carrier of FA allowed me to understand the disability at a personal level, considering possible obstacles that the population with special needs faces in order to have access to cultural goods and events. I don’t want to generalize or translate the word 'accessibility' as 'access with ramp', but in recent years I have tried to equip myself with skills that will help me to counteract this unfortunate trend. At the moment I work in a local literary institution.
Who do you live with? I am single and live with my mother and seven pets.
What is a typical day for you? My day starts early. I like to train in the morning (cycling). Then it's work, it's leisure, it's writing my travel diary and getting back to exercising because it's 6pm and at this time, I'm going horseback riding. Afterwards, it's dinner and going out with friends.
How long have you known you are living with FA? I was diagnosed when I was 18 years old.
Are there any others with FA in your family? No.
Describe an adaptation and/or transition you have had to take due to living with FA. It is difficult to answer this question. Not only from a psychological and emotional point of view, but also on a physical level. The fact of the matter is that I find myself in a 'neither-nor' situation: I neither walk alone full time nor use medical devices that help me. Usually, it's family or friends that help me with mobility, since: I'm not recommended to wear crutches, I'm not used to the idea of using a walking frame and, finally, we still haven't found a device that would help me make a smooth transition. I think it's a utopia too. How do you make a 'smooth' transition to the loss of physical abilities?
What do you like to do to stay active and what type of exercises work for you to stay strong? Cycling; Horse Riding; Physical therapy (bodybuilding and coordination)
Do you have any hobbies or special interests? I like to write about my travels and take pictures, although I don't understand anything about photography techniques or mechanisms.
What is a good trick to make daily life easier? The trick is to develop good communication. Having FA is synonymous with also having a 'village'; people around us, known and unknown, who strive to help us. Often, they do not even know how to do it and the ‘easy and quickest’ help is not always the best. Therefore, it is crucial to be able to convey to them what we are feeling and experiencing.
When FA gets you down, what do you think/do to feel better? I don’t think this question applies to me. I will not lie. There are frustrating, exasperating days, but I don't feel broken. If I assume that FA knocks me down or knocks me down, I'm informing myself that I've stopped living. That's not what happens. On dog days - everyone else has theirs -, I let myself cry (if that's the case), I go eat ice cream and think about everything I've accomplished, all the dreams I've lived. Then I pick up my 'To-do List', see what's missing and start doing it.
What is one way living with FA has POSITIVELY affected your life? FA taught me not to postpone; leave nothing to say or do later. This thought brought me lightness.
What is a favorite motivational quote of yours? "Impossible? Perhaps that was our biggest motivation.” "Que nunca por vencidos nos conheçam”, a leading quote of the Portuguese paratroopers that can be translated into, “Never known for giving up".
What is the best advice YOU could give a person who has been newly diagnosed with FA? Say 'yes' to almost everything. Challenge yourself. Life is about experiences and memories.
What is the first thing you want to do when a cure/treatment to FA is found? Run or dance. I'm still undecided; either means independence and freedom.