Name: Alijana Shakya
Age 32
Where do you live? Nepal*
Education I was pursuing my bachelor’s degree when my FA got worse so I couldn’t finish it, but I had still studied until last semester, although I have no degree. I am a disabled social activist, and am actively participating in it, and I want to advocate for FA to people around me.
Who do you live with? My mother.
What’s a typical day for you? Although I have FA, I try to live a normal life, although I can’t go hand in hand with the clock. Sometimes, it’s like a race with time, sometimes it’s lazy, sometimes I manage time differently. Basically, I am saying that I can go either way.
When were you diagnosed? After my school level, I could sense something was seriously wrong with me, but I was brainwashed by people by saying it was just outcome of a bad diet and a lazy attitude. Eight years ago, a doctor told me that I could possibly have FA. Knowing about my symptoms, I went to visit a doctor because I twisted my ankle. Six years ago, I was diagnosed on paper when I sent my blood to do genetic testing in India.
Does anyone else in your family have FA? No.
Describe your transition from walking to wheelchair. Until 21, I walked clumsily on my own, and after 21, I used my hands to take support indoors or ask people to hold my hand outside to support me. At 24, I started to use a walker inside my house as well to be safe from my unsteady body and from falling. At 30, I chose to be in my wheelchair so I could be more productive, and I made my room wheelchair accessible after a lot of difficulty.
What do you do to stay active? I keep my willpower strong; stretching relaxes both mind and body.
What are some of your hobbies and special interests? Cooking and writing articles.
What is something you do to make daily life easier? Be positive, calm, and have faith.
When FA gets you down, what do you do/think to feel better? I think about people who have worse lives than I do. I chat with others who have FA.
What is one way living with FA has POSITIVELY affected your life? FA has so many positive aspects, like I don’t have to follow societal rules, and I got the chance to go to a different country because I have FA.
What is the best advice YOU could give to someone who is newly diagnosed with FA? Be calm and careful, and life will be easier. You can do it!
God chose you to be an FAer. Let him handle you.
Enjoy your life with what you have now, and don’t feel bad about the future. The future will be seen in the future.
What is the first thing you will do when FA is cured? Wear high heels and dance.
*If you have FA and are traveling to Nepal, I suggest you bring a helper with you because it is quite a hard place to be in due to differences, but if you are not an FAer and want to travel here, it is heaven due to its natural beauty and rich culture.
Interview by
Jamie Plourde