Her name is Sundari Sivasubbu. She has a condition called cerebral palsy. Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by damage that occurs to the immature, developing brain, most often before birth. Sundari has written a memoir named “A Bumblebee’s Balcony: Celebrating Life with Cerebral Palsy.” “The bumblebee doesn’t have it easy, though. It works very hard to rise above the ground-it flaps its wings around 500 times and warms itself in the sun and uses all of its energy to achieve its dream of flying. This is for every single flight! Think about it….isn’t it crazy? The bumblebee must be one mad bee to even think that it could fly and defy the gravity every single time. And defy the brainy scientists and their assumptions,” Sundari explains the title of the book. Her memoir is a book of faith and hope and may be in the league of great literature produced across the world. Here are excerpts from the book to give you a glimpse of life with cerebral palsy.   

“The next stage seemed so intimidating, more so because there seemed to be no college in the city that was physically accessible at that time. We spent the summer scouring the major Arts and Science colleges in Chennai trying to find if there was even one college that was suitable for me with lifts, accessible restrooms, ramps at the entrance, accessible seminar halls and libraries.” (p.86)

“By the end of the three years, I had transitioned from a shy schoolgirl to a confident young woman, and had a full resume to show potential employers. For the first time, I felt comfortable with my identity, of which cerebral palsy was only a part.” (p.97)

“When the steaming cup of coffee arrived at about four in the evening, I wanted to gulp it like a thirsty mynah. My fingers were far from obeying me and they kept curling up, as if they were starting a rebellion against me. I was waiting for the right moment to pick up the cup as I didn’t fancy overturning it on the table, which was strewn with papers and pink, yellow and white forms. And I didn’t want to put my employers off the very first day of my very first job. So, I left the coffee untouched for more than an hour and finally watched with a sinking heart as the canteen boy cleared the cups. There went my last ounce of energy.” (p.100-101)

“Worse still, our monthly team review meetings were held at the cafeteria. I missed every single team review meeting. Further, there was no discussion on wheelchair access before team bonding outings. My colleagues invited me but no one thought about making these outings accessible for me. Of course, it hurt.”(p.105)

“When I went to the office, my stomach was full of butterflies at finally being inside that prestigious building. However, the joy came with a lot of uncertainties. I was surprised that a newspaper, which publishes so much about a barrier-free society, was full of barriers everywhere. There were steps to the lift, to the editorial rooms, to the restrooms-to everywhere.” (p.108)

Chennai Egmore Railway Station

“I became desperate. I had no idea how we were going to cross the bridge. Many people were watching curiously. A loud group of porters swarmed around us and we gave in. Four porters lifted the wheelchair and we slowly began the treacherous ride across the bridge.” (p.119)

“For the first time, I realized that the wheelchair never defines us. It is our performance, our talent, our hard work and persistence that make who we are. With the right attitude, the wheelchair could be big liberator when it came to mobility,” says Sundari (p. 123).

“The decision to wear hearing aids was one of the most difficult decisions we took to, just like the wheelchair. Wearing hearing aids is not the same as wearing spectacles. The problem doesn’t go away the moment one wears the hearing aids.In fact, the challenge becomes even more complicated if not trained and counseled properly.” (p.137)

“I wanted to become an atheist. I wanted to stop believing in the goodness of life. Life hurt terribly that moment. It seemed empty and very cruel.” (p.149)

Mother

“As a kid, I have longed to cut vegetables like her. She made it look so easy and interesting-the same way she made me believe that cerebral palsy was not such a scary Goliath to deal with. And, she ensured that we dealt with it with elegance and dignity!” (p.158-159)

Father

“I am fascinated by the power of the Universe – how it is capable of transforming someone from one extreme to the other. When I look deep, I understand that, fundamentally, he has not changed. He has reacted to my cerebral palsy in the same tempestuous, emotional manner, the way he reacted to situations as an angry young man.” (p.166)

Brother

“Thanks to the impossible labyrinth of steps inside the theatre, he had to carry me until he lowered me carefully into the soft seat inside the darkened theatre next to my friends. Though I was a bit disconcerted with all the argument and the carrying, my heart and my whole being was overflowing with gratitude. It remains one of the most memorable outings with my friends till date.” (p.175)

“If there was something that kept me sane and alive during those endless hours and days of therapy and isolation, it was reading.” (p.195)

“This was the first time I was travelling on train with my motorized wheelchair. We were extremely anxious. The biggest challenge was not being able to use the loo for more than fourteen hours as my wheelchair couldn’t enter the train toilet.”(p.205)

“However,once I discovered my love for writing, it didn’t matter why gravity acted more on me. Instead, I fell in love with the art of writing, something that strengthened me from the inside out and, later, shaped my identity to a large extent. (p.237)

“After a delightful chat and exchange of numbers, she bade goodbye, only to return a moment later with a lovely gift-a soft toy with a bunch of chocolates. She handed it to me and said it was a token of love and admiration. I was very touched. It was a spontaneous gesture from a mother, a special mother who found hope for her daughter and, in me, an example to quote to her daughter to help her come out of her shell. (p.255)

“Just then, something told me to surrender completely. Could be the acute pain, but I closed my eyes and began to pray fervently after a really long time. I had always prayed when I was younger but had never prayed with so much humility since I became an ‘adult.’ The intensity was such that I began to forget the pain. I began to cry in joy.” (p.259)

I sign off with a million thanks to the Universe, humbled by the overwhelming love and grateful for this amazing opportunity to set the powerful chain of dreams rolling in young minds, through this precious gift called Life! (p.268)

Here is the link to buy the book. Have a good read.

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