Nandita Venkatesan

Escape from the Jaws of Death

Nandita emerged victorious but scarred in her battle against tuberculosis. Realising the deep stigma and misinformation around it, she decided to speak up and be the voice of persons with disabilities, especially tuberculosis patients.

I am Nandita Venkatesan, a hearing impaired journalist, a TEDx speaker, a Bharatnatyam dancer and a two-time intestinal tuberculosis survivor-turned-patient-advocate based in Mumbai. I lost over 90% my hearing due to a rare side effect of an anti-tuberculosis injection. I speak up for rights of persons with disabilities (PWDs). Armed with a post-graduation in mass communication from Indian Institute of Mass Communication (IIMC), New Delhi, I work in the editorial department of The Economic Times (ET) newspaper.

It was an 8-year long battle against a dreaded bacterium named mycobacterium tuberculosis. I was first diagnosed with TB in the intestine in my teens, a month after I started my graduation. Acute stomach pain, vomiting & hair fall became the norm. At the age of 17, consuming up to 15 tablets/day for 18 months, greatly affected my self-esteem and I couldn’t enjoy the pleasures of college life, like other students. My doctor also advised me to hide my TB because of the deep stigma and misinformation around it.

On being declared TB free, I completed my post-graduation at IIMC, and took up employment at a prominent media house in the capital. After a short stint, I returned to Mumbai to pursue a diploma in financial management and work here. Suddenly, life came to a grinding halt. In the sweltering summer of May 2013, I held my mother's hand and broke down, as the doctor informed us of intestinal TB reinfection. It was a grave shocker to my family. This time, the ‘invisible villain’ was intent on striking a body blow. Life as I knew it, was about to change, forever.

Surgery was the only option, I was told. At 23, it was the last thing I looked forward to. I was wheeled into the operation theatre on July 24, to surgically remove the infected intestinal portion. Although the operation was declared a success, my condition started deteriorating a week later. A single planned surgery turned into six as the infection spread rapidly, snowballing into several complications, like low sugar, memory loss and kidney disorders. My condition was deemed ‘critical’. I witnessed a cruel and debilitating play of life and death. My independence was harshly snatched away; I had bald patches on my head and became a ‘walking skeleton’ at 32 kgs and 200+ injections, as I was forced to survive on small sips of water.

Just when I thought I was done with my share of suffering, I woke from a 10-minute afternoon nap to pin drop silence. I had lost my hearing in the blink of an eye! Now, not only was I dealing with TB, I was also staring at a life-altering permanent disability. I lost access to all things a person takes for granted—music, TV, movies, phone calls and proper conversations. Apathy among people for PWDs made matters worse. My confidence reached its lowest ebb and I withdrew into a shell. Three stigmatized words entered my life: TB + Depression + Disability—with no end in sight, after years.

I introspected and realized I had to make the best out of the worst circumstances. With extra efforts and support from parents, I resumed Bharatnatyam in 2015, and performed without hearing to music! I subsequently gave more performances. Last year, I started working full-time with ET, after a 4-year gap and took baby steps towards financial independence.

After my traumatic and eye-opening experience, I looked to turn my pain into power. India has the highest TB patients worldwide, yet it is a disease swept under the carpet. Hence, I regularly speak up for the rights of a patient—a voice largely unheard—and advocate the need for better drugs, meaningful involvement of survivors, especially women.

I have been invited to share my thoughts at forums like National Rotary Governors’ Meet, Corporate Sector Dialogue, where I exhorted corporates from Tata Foundation, Omkar Group, Cepheid, and others, to invest their CSR funds in TB, and delivered the Shanti Devi Memorial Lecture with Dr.SunilKhaparde, head of Centre’s TB Division on ‘Breaking the Silence on TB & Disabilities’. I gave a TEDx talk in Jaipur on greater sensitivity towards PWDs. Moreover, I was invited to Canada to participate and speak at the premier McGill University in June and got a chance to interact with their Parliamentarian Brenda Shanahan. At the grassroots, I handhold patients to complete the strenuous treatment and battle stigma, and have conducted sessions at reputed schools and religious organizations egging on students not to give up in life.

I have been awarded Rotary’s Vocational Excellence Award and Newsmakers Achievers’ Award by Afternoon Voice and profiled across leading media organizations like The Hindu, Times of India, Mirror Now, Times Now, Zee Network, AnandaVikatan, Franklin Templeton Investments etc., and international media like Huffington Post Canada. I intend to scale up my humble awareness initiatives and help more patients, and call for greater inclusion of the deaf in public life.

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