I belong to Siliguri in West Bengal, and I was born as a normal child. But I was just three-and-a-half years old when I had my first fracture. My parents could not understand why I was incessantly crying, so they took me to the doctor, and he told me that I had a fracture. My parents thought it might have happened accidentally, but three more fractures occurred simultaneously until I was one-and-a-half years old. Then, we found out that it was not a mishap or accident and something was wrong with me. So, since Kolkata was the nearest metro city to Siliguri, my parents took me to a doctor in Kolkata.
In Kolkata, some orthopaedic surgeons made me undergo some x-rays, tests and then diagnosed that I was having Osteogenesis Imperfecta or brittle bones disease. It is one of the rarest diseases in the world, that no cure in the world till now. The doctors told my parents to take care of me because the lack of collagen made my bones and muscles very weak. We were told that my bones were like glass and could break with the slightest of force. However, like everyone, even my parents were new to the disease, and they also did not understand how to take care of me with this critical condition.
For A Child With A Rare Disease, Everything Is Not Easy
Generally, if a parent found that their child is suffering from such a disease, they would be demotivated, but my parents took the challenge head-on. My parents were very encouraging, and they kept saying and believing that if God chose to give me to them, it was their responsibility to take care of me. They took me as a blessing and wanted to provide me with everything that they could. That’s how my journey started. As a child, I was very fascinated with dancing, and at that age only, I wanted to pursue it as my career. I also went for Kathak classes and did some stage performances, but for a child with a rare disease, everything is not easy. I had started getting frequent fractures during the dance classes; therefore, I could not continue it. The frequency of the fractures was also a result of the fact that other children who used to come for the classes did not understand the complexity of the disease.
After about five-and-a-half years, my doctors suggested to my parents to discontinue my dance practice. Since I was fragile because of my condition, I was always at home. If a ball had just hit me, I would have gotten a fracture. So, I would sit on my balcony and look at other children playing, I knew that time only that I was not like other children and that I was special, but I did not know what I could do. I was tiny when I understood that I could not do all the other children would do. So, no matter how much my parents and I tried to avoid it, I would still get a fracture. In my area, there was no school for specially-abled people to go to a regular school, and my parents always encouraged me to grow up with normal children.
I Fractured My Hand When A Friend Came To Congratulate Me
Several fractures happened at school. I remember this once, I had topped in the class, and one of my friends came to congratulate me. When he shook my hand, I got a fracture in my hand. So, every moment of celebration eventually ended up as a moment of suffering for me. My childhood routine involved coming back with a plaster on my hand or leg very often, followed by a month-and-a-half of bed rest. When I look back, I do not understand how I survived. There was not a year without a fracture, and my parents would try to find new ways to entertain me when I got a fracture.
Eventually, I developed an interest in singing because my mother was a professional classical singer. I started learning from my mother, but after some years, I became a child singer. My first award, “Dishari” for singing, was in 1999 – 2000, and all prominent personalities like Amitabh Bachchan were nominated for the same. Then, I began to think that I could become a playback singer. I was tiny when I got the opportunity of singing alongside Manna Dey, Anuradha Paudwal, Anup Jalota and others. I became a very prominent singer in my state, and my father was a photojournalist. I would go to perform with a fractured hand sometimes.
‘Wheelchair Warrior Of India’
I was thoroughly taken aback when I fractured both my legs after a fall in the washroom. When we went to the doctor, he plastered my legs in a wrong way, and months later, all I knew was that I could not walk. After 2001, I have never walked. That was a low point in my life, and I would question my destiny for showing me that day. Back then, I never knew that people would call me the ‘wheelchair warrior of India’ in the future. I wanted to answer people that a disabled person is not necessarily a burden on the community or the family. I always wanted to see the positive side of life.
My family shifted to Andhra Pradesh, and for the last 17 years, I have been staying here. We moved primarily for advanced medication for me. We found a super speciality hospital for my treatments so that there might be some betterment is possible in my condition. But after settling down here, we learned that this disease is progressive, and you cannot avoid fractures. So presently, one finger in my left hand is working, and all others got deformities. I discontinued counting my fractures after I had had 50 of them. After that point, I decided to count only my happiness and my blessings. I was astonished to see that I got people’s love and support to overcome them more than my pain.
In 2009, another setback happened, and I was confined to my room and my bed. Since I had continuous fractures, my muscle fibres had also weakened, and I could no longer move. Initially, I thought that maybe this was a side-effect of back-to-back fractures and it would be subsided within a week or two, but I was wrong, and I had to be like that for six years. I had to discontinue my education, my music classes, everything. Now, I had no hope left in me, and I was depressed. There came the point when I questioned my point of being alive.
I Am A Graphic Designer Now
On one such day when I was crying over my life, I just happened to get a thought that if I cry like that, what will happen to the other differently-abled people in our community. So, I decided that I had to do something to pull myself and my life together. So with one finger in my left hand, I started holding the mouse and got acquainted with the computer. I began with a computer course, and I started doing graphics designing, and I realized that if I wanted to change my black and white life, that was only possible through designing. After completing my course, I started working for people, and my clients were pleased with my work. My designs never show that a 90% disabled person makes them.
In 2015, I got an electric wheelchair and came out of my room and became the ‘Wheelchair Warrior of India’. I wanted to show myself and others that anything might happen to you; you might cry and complain, but giving up should not be an option. Then, I authored a book, and I wrote it with my one working finger. Now, after years of fighting against all odds, I am a TEDx, global motivational speaker, entrepreneur, world record holder, goodwill ambassador and India’s first differently-abled certified happiness coach. I have coached people in several MNCs and Universities across several continents. My next target is to make the country more disabled-friendly and make people aware that I’m not only memorable but in a limited edition.
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