Name: Amanda Oliver
Age: 18
Where do you call home? In the countryside in the middle of Sweden.
Education/Career: I am studying to be a horse groomer and in the summer I am graduating from high school. My goal with my education is to be able to work with horses, to be a horse trainer, and also to train other riders. Perhaps in the future, I am able to hold riding lessons for others with a disability, or that they can come and just be in the stable and groom and get energy from the horses. FA will probably affect me more in the future, so to train horses probably will get harder for me, but I will do this for as long as I can and my body allows it.
Who do you live with? I live alone in a house with 2-4 cats on my parents’ farm, and they live in a house next to mine. On our farm we have a big stable with, right now, 4 Icelandic horses.
What’s a typical day for you? I wake up in the morning and feed the cats and the horses, then I have school (during the pandemic, we have had online classes and we have had that for almost a year now). After school, I try to do some kind of training with my horse. But somedays I do not have so much energy and these days she gets a day off.
How long have you known you are living with FA? I got diagnosed with FA in May 2019 when I was 16 years old. I have had some light symptoms some years before that, but I didn’t know it was FA because I didn’t know about FA before I got diagnosed.
Are there any others with FA in your family? I am the only one living with FA.
Describe your transition from walking to walker/wheelchair. I am not in need of a walker/wheelchair right now.
What do you like to do to stay active and what type of exercises work for you to stay strong? I am doing a lot of riding, which is a good exercise for me to stay strong. And I also do some daily stretching.
Do you have any hobbies or special interests? I do a lot riding and done that for many years, and I am also competing. I also like painting which is really calming.
When FA gets you down, what do you think/do to feel better? When FA gets me down, I like just being with my cats and watch videos on things that makes me happy, or just watch Netflix. Or I like to listen to music or some podcasts. If I have some energy, I go out and just hang out with the horses on the field.
What is one way living with FA has POSITIVELY affected your life? I think one positive is that you can see more of the good side of other people, by showing that they can give you a hand if you need something. Also, you easily can see if friends are real or not.
What is a favorite motivational quote of yours? “If you’re happy doing what you’re doing, then nobody can tell you you’re not successful” – Harry Styles.
What is a piece of advice that someone with FA has given you that encourages and inspires you? This is not from someone with FA but this is motto I follow every day. “Treat People With Kindness,” – Harry Styles. Whoever you are, you should be treated with kindness and you should treat everyone with kindness.
What is the best advice YOU could give a person who has been newly diagnosed with FA? We are made to be happy, not to be perfect.
What is the first thing you want to do when a cure/treatment to FA is found? I think that I want to do dance again because I miss it so much.
“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? For me this means that I’m not a disease even though I have one.
Tell us a little more about you… I started riding when I was 5 years old and we bought our first two horses, a little pony and an Icelandic horse. Today I still have the Icelandic horse; he is 31 years old and a really big energy booster. Now I have 2 horses, and we have 4 horses in the family. A few years ago, I started to compete with horses and I really enjoy doing that. When I was little I also played football for 5-6 years and danced for 3 years. Also, I am obsessed with Harry Styles and One Direction.
Interview by
Jamie Plourde