Name Rishipal J Singh Hura
Age 35
Where do you call home? Orissa, India
Education degree(s): Bachelor in Commerce (B Com)
Who do you live with? My parents and my siblings
What’s a typical day for you? As I Look after my/dad’s Business (been 18 years), my typical day is exercise right after I get up—daily chores like bathing, breakfast—then my office—repeat. I love my work, so that is a recreation for me. Obviously, I take time out for TV and movies.
How long have you known you are living with FA? It’s been 17 years since diagnosis. My symptoms started with my cramped hands during exams. The doctors initially tagged it as a nervous breakdown, and two years after symptoms increased, my disorder got a name, Friedreich’s ataxia.
Are there any others with FA in our family? Yes
Describe your transition from walking to walker/wheelchair. I didn’t want to stop, and I knew my condition needed a wheelchair. So I showed people my stronger side, and my wheelchair became my companion.
What do you like to do to stay active and what type of exercises work for you to stay strong? I have recruited helpers whose job just is my stretching and dry brushing. Stretching really helps.
When FA gets you down, what do you think/do to feel better? There are many terrible conditions other than mine, so it’s okay. I have to pass with flying colors. In Sikhism, we say, “Ae bhi daat teri dataar,” it means “this is also your gift, my lord.”
What is one way living with FA has POSITIVELY affected your life? FA has made me humbler and taught me not to take anything for granted.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Good food, good exercise and a good outlook and you will win.
“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? I do my best and leave the rest to the supreme Lord. God will help me in tackling the adversities.
Interview by
Mary Nadon Scott