Name: Sahithi Dingari
Age: 29
Where do you call home? I am from Hyderabad, India.
What is a current goal you have with your education? How will FA add to your future? I have completed my Engineering degree in Information Technology. The onset of FA started when I was 22, and my mobility issues did interfere with my education as it was a bit difficult for me to go to college every day. Further, I wanted to pursue my masters, but I had to let go of the dream mid-way. FA did interfere with my career aspirations, but it also helped me become a powerhouse of confidence; it helped me get closer to writing.
What is your relationship status? Who do you live with? I am kind of involved with someone at the moment, and it’s kind of LDR. I live with my parents and elder sister (who also has FA). I have a younger sister who lives in the US, and we are pretty much happy with our lives. We have accepted the problem and the challenges it comes with, and we have worked our way through it. I have had stable relationships in the past; FA has never impacted my relationships. When it comes to expectations, if the person already knows that I’m in a wheelchair, then he would automatically know what to expect and what not to expect, and he would be supportive of it.
What’s a typical day for you? A typical day starts at 8:00, where I stay in bed waiting for my maid to shift me into the chair and then into the bathroom. I am done with my rituals and get ready for work by 10:00. I am a freelance writer, and my laptop is my office. I have my yoga class at 17:00 (5pm) and try to spend some alone time after class. I have a bunch of friends who keep me engaged until I sleep at 23:00 hours (11pm).
How long have you known you are living with FA? I think I always knew I had some problem in me and my doubts got concrete when my sister got diagnosed with FA when she was 17. My symptoms became evident when I was 19-ish, and I went to a doctor when I was 22. My doctor diagnosed it based on my sister’s reports- I don’t have any evidence other than the progressive symptoms and the doctor’s prescription.
Are there any others with FA in your family? Yes, (my elder sister).
Describe your transition from walking to walker/wheelchair: I always knew that I would use a wheelchair (because my sister already has FA). I walked like a drunk during graduation, and I had lovely friends who made sure that my life at college was easier. Without them, I don’t think I would have earned my college degree. It’s the same with my family. I come from a giant joint family, and I am close to my uncles, aunts, and cousins. Everybody takes care of me like a flower. My transition from walking to a WC was a necessity- I never hesitated using it because I thought of my WC as legs. I needed it for movement. But then, I would avoid taking pictures with it. Things changed as I grew up and embraced myself, along with my limitations.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do Yoga
Do you have any hobbies or special interests? I love reading and writing. I am on TIKTOK, but I use it occasionally. I am also on a traveling spree.
What is a good trick to make daily life easier? Try to focus on the positives you have and never hesitate to ask for help!
When FA gets you down, what do you think/do to feel better? I don’t think FA has ever put me down. But I face low points from time to time. I read or write to get out of it. I think the best way to keep depression at bay is to keep yourself occupied.
What is one way living with FA has POSITIVELY affected your life? I believe that I am what I am because of FA. Without FA, I would have been an irresponsible, spoiled brat with strong but directionless opinions (100%). But I got grounded, focused more on books, have great friends, mended my relations with my family, and found someone great who sees more than a wheelchair… all thanks to FA. I feel FA is my driving force.
What is a favorite motivational quote of yours? “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you from doing well and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” -Stephen Hawking
What is piece of advice that someone with FA has given you that encourages and inspires you? People talk about you and judge you no matter what, why don’t you serve them with a bit of spice?
What is the best advice YOU could give to a person who has been newly diagnosed with FA? FA or No FA, people suffer! Some people struggle physically, while others go through mental hassles. Never let your physical limitation gain over your mental strength.
What is the first thing you want to do when a cure/treatment to FA is found? This question needs a lot of thinking because I do almost everything now… yeah, I’ve got one – I would like to make the trip to Everest. But yup, I might find a way to do that even without a cure (my best friend gives me the confidence).
“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 think my life so far has revolved around this statement. Living with a disability in India is quite difficult, but then I think I’m living a fulfilled life. I have graduated like a normal kid, I have a job, and I roam around… I have quite a normal life, but my morale is much higher than the normal (I admire myself for that).
Tell us a little more about you…..I am Sahithi, and that is the Sanskrit word for literature. I feel that my name defines my entire life! I love writing, I enjoy music and admire meaningful lyrics. I like long, deep conversations about almost everything under the sun. I can talk about politics, budget, wars, love, and I lecture of philosophy… nonstop. I identify myself as a social introvert (stays mute in public but talks non-stop to people I like). I am currently in a very happy place… all thanks to my supportive family and friends. I have an excellent family and friends-like-family, who are my biggest strengths). I aspire to write at least one bestseller (I believe that every person has one bestseller within), I love cooking, and I am currently basking in my new-found love – TRAVELING.
Interviewed by
Jamie Plourde