Meet Hasitha Illa

Name: Hasitha Illa

Age: 23

Where do you call home? My home is located in India at the heart of Pune City.

Education: I recently completed my Btech in biotechnology. I’m now preparing to start my Ph.D. in genetics. FA has never been an impediment to my educational goals. In fact, it fueled the fire in me to work harder.

Family/Home: As of now, I live with my parents, younger brother, and a dog.

What’s a typical day for you? As of now, I am at home and work from there. I took up freelance writing as I have a knack for it. I also manage a blog where I write inspirational content using my experiences. I write with the intention to help others mentally.

How long have you known you are living with FA? I was in the USA when I got diagnosed. I was 10 when it was confirmed that I had FA. I was initially misdiagnosed multiple times before we came to know I had FA. It took a lot of appointments in various hospitals before they confirmed the diagnosis.

Are there any others with FA in your family? No

Describe your transition from walking to walker/wheelchair: It was not easy from the start, and I wasn’t ready to accept that I would be in a wheelchair. Initially, I was very reluctant to use it as my aid. You wouldn’t believe it, but I used to take the extra sweat and work just to escape from using it. Obviously, later on, this didn’t work, and I had to accept that this is how life would be. I was becoming content with my condition; the wheelchair came into my life. I was more upset before I even started using one. From the beginning of my college, I started using it, but, before I was so dissatisfied with life. By the time I actually became wheelchair-bound, I started accepting this and was the happiest. It is funny how our minds and its thoughts can play a major role in our life!

What do you like to do to stay active and what type of exercises work for you to stay strong? I do physiotherapy

Do you have any hobbies or special interests? I love to listen to music, and I’m passionate about writing. This actually led me to start my own blog to serve as an inspiration with all the pain I’ve been through.

What is a good trick to make daily life easier? Just be content with your life. The thoughts which have actually played a major role in shaping our lives. If we think positively, then nothing can harm us, and life will surely be easier.

When FA gets you down, what do you think/do to feel better? It really doesn’t affect me anymore because I started Heartfulness meditation, which changed my life!

What is one way living with FA has POSITIVELY affected your life? To be honest, FA made me who I am today. I can’t imagine a life without it! It has shaped me into a strong and beautiful human being. Most importantly, FA gave me a purpose in my life. I gave many speeches in order to inspire
the people around me. I even started a blog with a similar purpose.

What is a favorite motivational quote of yours? It doesn’t matter how slowly you go as long as you don’t stop

What is a piece of advice that someone with FA has given you that encourages and inspires you? You do what you do best and don’t let the world’s judgment get to you.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Everyone has the potential to achieve as long as you have ample will power in you.

What is the first thing you want to do when a cure/treatment to FA is found? Finding a cure and wanting one has made the majority of my life. Now, I’m carefree and neutral when it comes to a cure. I don’t hope for a cure anymore. I frankly don’t care anymore. Even if a cure doesn’t come, I don’t mind because I’m extremely content with my life. Unless the treatment is true to its result, I am not interested. I am done trying, and I’m starting to live a life which makes me happy.

“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? This statement basically means that I have FA so, that shouldn’t take over my life. I have to learn to live with it, which all of us are doing!

Tell us a little more about you…My name is Hasitha, and I’m addicted to music, especially melodious ones. I’m an ambivert who has a balance between going out and staying at home. I have an extremely loving family and supportive friends who fulfill all my adventurous wishes. I love to write and publish a few books in the long run.

 

Interview by
Jamie Plourde