I was born in Nagaland, India and I grew up in a few places such as Arunachal Pradesh, Shillong and Bhubaneswar. There is 5 of us in my family. My mother, father and two elder sisters. My eldest sister is 30 years old and also has FSHD.
My family and I are very close and my sister and mother have always been the biggest inspirations to me because they have taught me to be kind no matter what the condition is and to always be a helping hand to others because that’s what gives life meaning.
As a child I always dreamt of being a researcher. I loved playing football, going to dancing and watching cartoons. My favourite movie as a child growing up was Harry Potter because he taught me to have a good heart and to be courageous.
It was at the age of 12 when I started to realised that something was different about me. I couldn’t play sports properly and I struggled to do things that seemed simple to others like run. I hid my difficulties from others because I did not know whom to talk to about them and I was really scared of been misjudged, left out. I was afraid that no one would ever understand me.
In 2008 I had tests done and at the age of 14 I was diagnosed with FSHD. At first I did not really know how to cope with the diagnoses, I was young and everything seemed very confusing. I didn’t really understand.
In my day to day life I face quite a lot of problems, like getting up from the bed, putting on clothes, travelling to my lab and doing house chores. FSHD may limit me physically but it does not mentally.
I may no longer be able to do physical activities which I love the most and this socially limits me to hang out with people but FSHD has made me stronger. It has taught me to embrace my imperfections and to love every bit of myself. It has given me great friends in my life and made me more empathetic about others. It inspires me to do more for myself and for others so that people don’t feel alone.
I may have FSHD and be limited to somethings but defiantly not my sense of humour. I will always try and make people laugh and will continue to do so. I love being around my family and friends as in return they also make me laugh a lot.
There are times when I am extremely upset and this is whenever I fall, I can’t get up or feel physically weak. This makes me extremely discouraged because of the fear of this diseases progression.
When I am feeling like this I try to take inspiration from everyone around me and from my Dr. Arkasubhra Ghosh who has been one of my biggest inspirations. He has taught me how to work in the world with my condition and how to use your privileges to help others.
In future I may stop walking and end up using a wheelchair. This knowledge does affect me and my approach to life because choices made in the life have consequences. Therefore, I need to make wise decisions at every point in my life in order to give me comfort.
If a cure for FSHD is found, the first thing I would like to do is go trekking and do all the kinds of adventurous sports that I can’t do now. There are lot of things on my wish list, like go back to the dance class, travel the world, interact with more people and move abroad for higher studies.
I am not really sure who would be inspired by me but I would like to inspire people who are suffering from any kind of illness or disease and let them know they are not alone and if I could have any superpower it would be to remove hate and illiteracy from the world, because hate makes us feel like everyone is different and illiteracy makes you resistant to change.
Suraj Kumar Acharya, 26.