Brittle But Not Broken

"In my childhood, I used to dance. One day, doctors told my parents that dance was not my cup of tea. At that time, I couldn't understand that I had a rare disease which would restrict me from leading a normal life. My first fracture happened when I was just three-and-a-half months old. Today, after three decades, when I look back, I feel my birth itself was special and unique. I was special by birth," says 31-year-old Dr Sai Kaustuv Dasgupta.

Sai has Osteogenesis Imperfecta (OI) also known as the brittle bone disease, since birth and reveals that he has suffered more than 50 fractures so far. OI is a medical problem which affects bone formation and strength, and in turn leads to frequent breakage of bones and multiple fractures. This is due to lack of collagen in the bones and muscles. A rare and very complicated life-long disorder, it causes the affected to have a fragile skeleton. Several other body systems also get affected so there is hearing loss (50 percent as of now), teeth are rather soft (not strong), etc. As a result, today he is 90 percent physically challenged.

And astonishingly, today he is a happiness coach, a global motivational speaker (including on Tedx) a visual designer, singer, crusader for the cause of the physically challenged and those with similar issues, Dr Sai Kaustuv Dasgupta has been variously described as a Wheelchair Warrior, a hero, global icon, goodwill ambassador, diversity champion, and above all, an extraordinarily courageous, inspiring and amazing personality. Sai Kaustuv is also Founder, Happiness Unlimited (a virtual community).

Consider this. If this is not inspiring, then what is. Despite being 90 percent differently abled, he not only handles the many careers mentioned above, but has also notched up several awards and recognitions. These include being honoured by the World Book of Records, London, 2022; making it to the D-30 Disability Impact List 2021 by Diversability, USA; Karmaveer Chakra Bronze Awardee at REX Karmaveer Global Fellowship; Goodwill Ambassador by Vivekananda World Peace Foundation; Inspiring Role Model Award 2020 at Madras Independent Film Festival; Best Graphic Designer of the Year Award by Blindwink Pvt Ltd; Bharat Prerna Award Winner by Ample Mission; People's Choice Award by Dr. Batra Healthcare; making it to the Limca Book, India Book, Asia Book, Guinness Book and 16 other world records; Cavinkare Ability Mastery Award Winner by Ability Foundation; Fourth Global Icon by PeopleMatters; winner of All India Wheelchair Wanderlust at UMOJA, 2016; Dishari Award for West Bengal's Best Child Singer 1999-2000; and over 500 other national and international awards!

Hailing from West Bengal and currently dividing his time between Bengaluru and Puttaparthi, Andhra Pradesh, the home of spiritual guru Shri Sathya Sai Baba, where he lives with his parents and brother, Sai Kaustuv's life has been a long and arduous journey to where he is today. He completed his schooling up to the 7th standard in Siliguri, West Bengal. He was a very good student and a topper too. After settling down in Puttaparthi, he completed his 10th and 12th class via distance education from Sri Balaji College, Andhra Pradesh. Later, he completed B.B.A from Chhatrapati Shahu Ji Maharaj University, Kanpur; and also received an Honorary Doctorate from London University for his research work in the field of accessibility and happiness.

His parents, Dr Shila and Dr Kaushik Dasgupta, show care and love which are incalculable, he says. His mother's account is both heartending and a message of hope for parents of the differently abled. Dr Shila says with emotion: "At three and a half months old, his first fracture appeared. Within a year, he had fractured three more bones. We took him to Kolkata, the nearest metro city of Siliguri, where we are from. The doctor thereafter having a series of tests explained to us that Sai is suffering from O1, commonly known as brittle-bone disease. His body was not creating the collagen required to develop his bones."

Hence Sai was advised a sedentary lifestyle. This was very difficult, say the parents, for a hyperactive child like him who loved dancing and singing. As they say: "Sai Kaustuv often blamed his falls and broken bones on his clumsiness. he saw that the other children were healthier, so he just thought to pay more attention to his steps or walking, until at age 10 when he fell and broke both his legs in the bathroom. He could not walk after that. For us, the brittle-bone disease was a new concept and at that time there was no awareness to build any protection to avoid his innumerable fractures. But we did not complain or did not ever feel that why us?"

It is Kaustuv's parents' attitude too that is inspiring. There was acceptance rather than bitterness or anger on the part of his parents. "We accepted our child with all his deformities and felt why not us instead of why us. If Sai Kaustuv is special, we both are special too." They decided to move forward giving him the best possible opportunities within his limitations.

This meant taking on various challenges at every step and in every way. "Due to his critical condition, Sai was extremely thin, and opting for a healthy diet or supplements was of little help. We saw hard times. For example, while traveling by train, sometimes few people used to taunt us saying, "You both have your children's share of food as well? Doesn't he get anything to eat'?" This was very hurtful for them, but they accepted that some people can be judgemental without finding out the truth.

There were many barriers along the way. His mother says she took the job of teacher at many of her son's schools only to be able to look out for him. However, sometimes it used to be helplessness as most of the fractures used to happen right before their eyes, "but we could not stop it as he was brittle just like glass. As he grew up, he became mature and avoided all the things which are not in his favour. We never sent him to a special school, but we asked Sai to pursue his own choices and showcase to the world what he is able to do, not his disabilities. He is facing problems every single day and moment. He has severe hearing loss. He is confined to a wheelchair now, one hand and one finger of him functions at present, that's all. But that small thing is his asset and his can-do attitude helped us a lot to understand and learn, how to be positive throughout it all. He became our hope and he made us proud." The child has taught his parents, they say. Both Dr Shila and Kaushik have also received honorary doctorates (the father for his work in the fine arts and Shila for her work in use of spirituality to overcome stress).

Today, Sai Kaustuv is an adult and tries to be as positive and happy as possible. What is his daily schedule like? He replies "As I'm a creative person, my routine is creative too. Once I wake up, I have my morning things to complete with the help of my parents from brushing my teeth and the rest with the help of one of his parents. Then I try sometimes to devote myself to spirituality as it gives me a charge up for the rest of the day. That followed with my breakfast which generally mom feeds me, and I then get ready to start my work. Then it's a long day for me to finish all work as I'm working now from home and I love that. I am working in an information-technology company as a visual designer. So that's how it ends up to evening with a break in between for lunch. Once I complete my work, I spend time with family, sometimes there are talks, interviews, or happiness sessions scheduled which I attend. And then devoting some time to music and sitting together with mom gets me into another world. We keep practising bhajans and feel great spending quality time with the music. Later I do some media work and try to attend to questions or messages of people from around the world in my circle. I end my day with dinner and then some study circle or planning's of upcoming things. We together (family and I) sit and do some healthy discussion, or sometimes during the weekend we watch movies too."

And yes, he does have to take a few simple precautions which he says are actually not a big deal like avoiding crowded places or uneven ground. He takes ayurvedic medicines whenever needed and his mother being a naturopath and acupressurist, takes great care of her son's food and medicines for optimum health. As he says: "My mother's hands are my hands...I do not remember when the last time was when I ate with my own hands." The family says candidly that they know precautions cannot change one's destiny, but awareness creates protection.

How and when did he become a Happiness Coach? Kaustuv reveals that after he went through a long bout of depression from 2009 to 2015, after which he acquired a new wheelchair to move around on his own. "After meeting many people during talks or meetings, I have realised that many are not really happy but just pretending to be. So, I finally chose this unique option to become a Happiness Coach as Happiness itself is an identity, which describes the real essence of human life. They search for Happiness but not in the right places. I feel sad when people complain about silly things and that they don't have enough opportunities to excel in life, people feel caged and they blame and complain about others. They feel happiness can be brought by situations, people, and their behaviour. But they are never satisfied with their current belongings. Also, real happiness comes from gratitude, so I always try to be grateful as much as possible." Comparing our THIS with their THAT, we keep postponing our happiness, but I can tell that happiness is inner stuff. Seek it within and you will get it. If being a 90 percent differently-abled guy, I can be a Happiness Coach, then what is stopping you all to express real happiness? It is free of cost. And happiness doubles when it is shared."

What is his advice for the physically challenged in the world? Kaustuv says it is actually very simple: "Think out of the box and do something you are good at! Life is too short to celebrate it fully. So, give value to you every moment. It is okay to be scared, it is okay to cry. Everything is okay but giving up should not be an option. If you cry and complain about small things in life, you will never have enough." He says the physically challenged should focus on what is good in their life, count their blessings and move ahead, and try not to brood on their problems.

Sai Kaustuv also urges people to understand and respect differences because no two individuals are the same. "You are special, you are unique, and be proud of that. I have turned my disability into my driving force. My strength lies in my unbreakable spirit. It only gives me protection to avoid pain, suffering, and negativities of life. Yes, I'm brittle, but not broken," he says like a true warrior.