All posts tagged "#raredisease"

Meet Dr.Sai Kaustuv Dasgupta, The Wheelchair Warrior of India. Dr. Sai suffers from a rare disease called Osteogenesis Imperfecta or brittle bones disease. It is one of the rarest diseases in the world. His bones were like glass and could break with the slightest of force. He stopped counting the number of fractures after he hit 50 fractures. In order to know more about Dr. Sai, we took a deep dive into his life and sat down with him to know more about his life. Dr.Sai Kaustuv Dasgupta, you are in a true sense, the Wheelchair Warrior Of India, even after limitless hurdles, what kept you motivated? Being a Wheelchair User for the last 21 years, I never believed that people will call me ‘Wheelchair Warrior’ one day, I never had an imagination that I will be confined to a wheelchair or rather it will be my lifeline but every one of us have to accept and I also accepted my life in a wheelchair. My parents kept me motivated, my mother Dr.Shila Dasgupta, my father Mr. Kaushik Dasgupta, and my younger brother Dr. Kushal Dasgupta, are the first people through whom I always got the motivation and inspiration. They are the ones who made me successful today, they are the ones who had faith in me that I will achieve great things in life one day and in each and every down situation, they are the refuge, in all my happy moments they are the shoulders, where I have surrendered myself. They never say no to me, they always encourage me to think out of the box and do something which can be an inspiration to millions of people out there. Last but not least I motivate myself, self-motivation is very important, I always keep motivating myself that I am here for a special purpose and I will achieve one. What is the most memorable incident from your rollercoaster journey? There are innumerable incidents in this roller-coaster journey and that’s what life is about, there are many ups and downs and we have to balance ourselves in those good and bad times. Sometimes we question, why it happened to me or happened to our family but we don't know the story behind it, so it is not a wise thing to judge someone by looking towards their appearance or their outlook. Always know the journey behind and if you ask me about my most memorable incident then it was when I went out after 6 years under the sky. Since from 2009 to 2015 I was confined in a small room because of the severity of my disease, I could not sit in a normal wheelchair, I had to sit on my small cotton bed with a backrest, I was not able to move from my small room, it was a complete upside-down position of my life, I went through depression but then I came out and got my Electric Wheelchair in 2015, and then I finally came out under the sky, that was the very big moment for me, it was a new birth of Dr. Sai and I decided that I will be a beacon of hope for millions of people who are looking at me as an inspiration. What steps should be taken according to you to sensitize the society? The change should start from your own home and within yourself because there are times when we expect things from others but we don't practice that ourselves. Every person is different and so is their journey. Society will change only when you change. People need to change their mindset about disabled people, a taboo that is in society for ages, which is that a birth of a disabled person is a bad sign, they have created a particular image about them which is vulnerable. But no they are not, it is just a matter of opportunities and then see what they can do. Society will automatically come and sink with your thinking if you are ready to resonate that positive thinking. How has Graphic Designing changed your black and white life? After spending my life in a confinement zone for 6 years, all the things were going out of my hands, I got very negative about things in life. Then finally one fine day one of my friends suggested me to do some graphic design stuff, I was very new to computers at that time, I was in a complete mobile condition, I was stiff and my joints were not working except the first finger of the left hand. I broke that barrier, I completed my diploma course in one year then finally did the graphic designing basic course. Gradually I started putting colors in my black and white life. Later I started working for some of the clients and that satisfaction on the face of the client in itself became an achievement for me. After getting to know that this disease is progressive, how did you tackle the pressure? My parents took me to the doctors in every part of India. They have never left a chance to see any doctor for my disease. Then finally after settling down to Andra Pradesh, I came to know that the disease is progressive. Osteogenesis Imperfecta is something that has no cure, it comes under 7000 rare diseases of the world. The disease has made my bones brutal because of the lack of collagen in the bones and muscles. Because of the disease, I am having a hearing impairment and my teeth are also very weak. But despite all of this when I got to know that my disease is progressive, It hit me hard and I decided if my disease is progressive, so am I towards my attitude and towards my goal in life. I purely believe, where there is a will, there is a way. Let the disease be as it is, I will keep on marching on my road to set an inspiration. How did your disability affect your social life? Generally, if we see, the belief system is such that we don't believe in the social life of a disabled person. Mostly the parents are not educated to make their special child come out in public because they feel shameful about it. But this shouldn’t happen because being a part of the society we also have equal rights, the right to choose everything, right to have a normal life. We can perform very well in life in every sector of life. So social life comes from that idea where people think of equal opportunities for all. How did it feel to not be able to pursue your first love, dance? Dance for me was a tool to express my emotions to express my joy. I was very fond of dancing, I use to watch TV and I used to copy the dance steps. After seeing my passion for dancing my parents sent me for Kathak training where I use to train, I trained there for 5.5 years and also did stage performances. But this rare disease again became a barrier for me because of the frequent fractures. Then doctors again suggested my parents to make me opt for something else other than dancing. Because people were unaware of my disease, especially the people who were a part of my journey in dancing and that was making my path more challenging. Doctors suggested my parents that make Sai comfortable and help him opt for some other carrier because dancing is making his bones weaker. Knowing that suffering is going to be a part of your life and dealing with every fracture as a new surprise, needs a lot of courage, where do you get that courage from? Dealing with these fractures was nowhere possible without courage. After every 1.5 months, there was a fracture and then again plaster and it kept ongoing. This was all the rollercoaster of suffering and smile. Wellness was never a part of me since my childhood. But overall these fractures, I choose my blessings, I never let all this break me. The main focal of my courage was my family, at every step of my life they were standing right there for me. Surprises and sufferings are like the two sides of a single coin and ‘S’ playing a major role in your life, and how did you convert that into the other ‘S’ of your life, that is Strength? Sufferings and these problems were my strength because they taught me how to overcome all of this and be grateful about this life. When I get on stage and talk to people, they feel grateful about their life and their able bodies. Disability is not only through the body, it is also the mindset of how you want to see yourself. It is your choice to turn suffering into your strength and reflect your abilities. Since my childhood when I got to know about my disease I started balancing my suffering and my strength. I always knew that suffering is going to be with me, no matter what I do in life but I chose to motivate myself with each surprise that I used to receive in the form of a fracture. Even after endless hurdles and judgments, you achieved a lot, against all the odds, on every step, you proved that this disability can not defeat you. What message would you like to give to the younger generation? Don't search for happiness outside, life is a journey and not a destination. When you start to compare yourself with others that’s when you start getting demotivated, but you are different in your own way, everyone is here for a different purpose, your story is special, you are special. And yes always keep a smile on your face, because that is a miraculous thing.

SocioTab

All posts tagged "#raredisease"

Interactions

“I came out under the sky after 6 years”

Recent Posts