Sai's story
Sai Kaustuv Dasgupta
27 years old
Puttaparthi, India
Brittle Bone Disease (osteogenesis imperfecta)
“Please, dear God, if you are not going to heal me from this disability, at least heal my soul and let me accept it and learn to live with it.” This was my daily prayer growing up. It was not an obligatory ritual that I repeated mindlessly, rather it was a cry for help I said whenever I was down, which was everyday. And by down, I mean literally, and not just figuratively.
At three and a half months old, the first crack appeared. Within a year, I had fractured three more bones. The doctor explained to my parents that I suffered from Brittle Bone Disease (osteogenesis imperfecta) and that they will need to prepare me for life on a wheelchair, because my body was not creating the collagen or protein required to develop my bones.
It was not easy for a hyperactive child like me who loved dancing and singing, and I often blamed my falls and broken bones on my clumsiness. I saw that the other children were healthier, so I just thought I needed to pay more attention to my step - until at age ten, when I fell and broke both my legs.
Despite having close to one sixth of the world’s population, India was never very friendly to the disabled. During my early days in a wheelchair, my parents spent more time carrying it than pushing it around. My mum’s eyes lit up whenever she saw a ramp or a lift… it was an unusual sight.
From a young age, I wanted to be independent, not out of pride or arrogance, rather because I was impatient and restless. But with every movement, I broke a bone. I grew desperate and weary, I could not do anything I wanted to do. The humiliation of not being able to stand, walk or do things independently took a toll on me. The devastation with every fracture added even more distress to the already insufferable physical pain I had. I always felt like giving up on life, but my mum would tell me that I’m still young and I have a long life ahead of me, but this scared me even more. I repeated that prayer constantly, until one day it was heard. I was not healed, but for the first time my mum’s words resonated in me differently. I thought that day; if I’m young and I’ll be around for decades to come, I will not be spending them in despair.
That day, I began a journey of learning. I started studying graphic design because that’s where my passion lies. The real challenge was to find a way to do it with my limited physical ability. I learnt to do everything by operating a mouse with my left hand and that too with one finger only. My hands cannot reach the keyboard, but I can type quite fast by using a virtual on-screen keyboard.
Another thing I’m learning is how to be positive throughout it all, this is why I want to focus on my ability rather than disability. It’s incredible to think just how much of the body’s ability lies in just one finger; a tiny organ that most physically-able people take for granted is my most invaluable asset.
Things have changed immensely between fifteen years ago and today. Once upon a time I was worried that I will live my life confined to this wheelchair and it scared me to think that I had to endure it for so long. Today, I am known as the “Wheelchair Warrior of India” because of my work advocating for a more accessible country for all. I am able to use my creativity by being a designer, and I am finally living my dream of travelling around India and the world giving talks and spreading awareness and positivity. I gathered the courage to take part in singing competitions and won a few of them, I wrote books and opened publicly about my condition. A lot of people don’t understand it when I present myself as a motivational speaker and happiness coach, and they think it’s an invented position to keep myself busy, but the truth is that happiness is very much needed in this world and I want to spread it around, even if I must do it from my wheelchair, with 50 fractures in my body - and counting.
“Another thing I’m learning is how to be positive throughout it all, this is why I want to focus on my ability rather than disability. It’s incredible to think just how much of the body’s ability lies in just one finger; a tiny organ that most physically-able people take for granted is my most invaluable asset. ”
As a differently-abled person, I wish to solve the problems that I face in my daily life, so I can help the future generations. I want to work for everyone in India and with the government to give us some much-needed attention. I also hope the medical community can work with us, patients, to learn better how to treat and combat this disease, and how to manage and live with it.
“Please, dear God, if you are not going to heal me from this disability, at least heal my soul and let me accept it and learn to live with it.” I still repeat this prayer constantly, but I do not do it with desperation anymore; my soul has indeed been healed, and now I pray for all those going through a similar condition, that they took can realise their potential and be happy.
By Michel Wahba