Payal Kapoor was 22 and looking at an exciting life ahead when a malignant disease took over her. A viral meningitis that doctors hadn't been able to diagnose and treat on time. From her eyesight to hearing to all other active senses of taste and smell, everything vanished in a matter of days.
Many years of misery and a breakthrough later, Kapoor picked up her pieces and began to build her life anew. Today, Kapoor is 52 and in love with her world. There is so much she experiences that the eyes cannot perceive or fathom. What was the mantra that guided her through darkness and into this light that is all hers? "I believed in the resilience of who I was," she says.
In an interview with SheThePeople, Kapoor - a motivational speaker, podcast host, disability awareness advocate and culinary expert - recalls the exact moment from her youth when everything took a 360° turn.
"It was August 1992. I had completed graduation in hotel management and had been working in the industry with Oberoi for two years in Hyderabad, where I lived with my family. I was a happy, regular 22-year-old. One day at work, I started feeling sick. I consulted a doctor who gave me medication for the fever - it was the turn of season and fevers were common, so no one thought much of it."
Three days later, however, things took a serious shift.
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"One morning suddenly, I was momentarily blinded in my left eye. Everything went dark. I looked in the mirror and saw that the lower half of my eye was darkened - I freaked out."
With her parents, Kapoor rushed from one doctor to the next. The physician told them to see an ophthalmologist who further recommended a visit to a neurologist. All this while, Kapoor said the 22-year-old her was engulfed in pain all over her body. In fact, she recalls the headaches got so bad that she used to hit her head on surfaces for relief. Her eyesight by then had begun to weaken.
"I underwent all CT scans, MRIs, X-rays to see if I had a tumour. Nothing turned up in my tests. One doctor said there was a degeneration but can be stemmed with steroids. Our medical system is so messy and disorganised and skewed, and was especially so in the 1990s," Kapoor tells us.
"In less than a week, I went from healthy happy Payal to vegetating Payal."
She was admitted to a hospital in Hyderabad where she stayed for over a month. "They were giving me sleeping pills and tranquillisers that didn’t agree with me. I was hallucinating. I was screaming out in the middle of the night... It kept getting worse."
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"One day, I could see a hazy face in the mirror. The next day, nothing."
After spending time in and out of hospitals in Hyderabad, Kapoor flew to Mumbai for treatment. Her parents, during this upheaval, stood rock-solid beside her, she says. A prominent neurologist at Bombay Hospital, whom she consulted, asked for her CSF pressure report. She was clueless. The previous hospital hadn't cared to make those reports.
"The medical negligence and complete apathy for human life was appalling," Kapoor says.
"I had also stopped looking like myself. I looked like a scary caricature. My eyes had popped out of their sockets and had fallen into squints. My eyeballs didn’t move. The regeneration spread from my eyes to ears, and ultimately took my taste and smell too. I didn’t want to meet people; the disease took away from me who I was."
Kapoor recalls her family had to use their fingers to write on her palm to communicate with her.
Seven months later, tiny rays of hope began poking back in - something Kapoor today attributes to a "combination" of treatments that included scientific medication as well as alternative homeopathy. "One day I heard a crow in the distance. That little sound gave me so much hope. My right ear was slowly opening up."
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As per the government's National Blindness and Visual Impairment Survey 2015-2019, 4.8 million of India's population is estimated to be facing blindness. Despite the significant number, equal public health services and post-diagnosis care are essentials that seem to be missing from the discourse - even the medical one.
Kapoor says the Hyderabad hospital she was admitted to "hadn’t bothered" to take care of her physical fitness during her time there. "The complete disregard for human life and apathy was appalling... Nobody talks of rehabilitation. What happens next? None of the big hospitals told my parents what should be done - the daily, practical basics. They just want you to sit in this rut of doctor-patient relationships and make money."
There was even a homeopathy doctor that Kapoor claims kept billing the family beyond maximum healing he could offer. "He also tried to cash in on my state, wanting to publish my story and picture as proof of his treatment methods. When I refused, he cursed me."
"Every time I tried to put my head up, I was kicked down."
Back in Hyderabad, Kapoor, with the help of her family, found the strength to begin doing things again. "My mother was the superwoman in this entire story. She took me around the house to reorient me, gave me basic tasks like washing dishes or cutting vegetables. That’s truly what made all the difference to my life. My sense of self started coming back."
Friends began visiting Kapoor once more, reading to her or taking her out for films and bike rides. After spending six years in denial, "I reached a point in 1998 where I just got fed up of sitting around."
A friend connected her to an NGO she got associated with in November 1998 and life began renewing. A mentor from the NGO came to assist her around the house, teaching her the basics all over again - applying paste to her toothbrush, buttering her toast, arranging clothes in her cupboard. This was the time she also learned braille.
"Getting back into the kitchen was like riding a bicycle. This time, it was cooking without looking. I still remember the first time I cut beans and sank my hands into the bowl; it was the most overwhelming feeling," Kapoor says.
"Slowly I realised, there is so much more to life than just seeing. There are so many beautiful sensory experiences we just ignore. The universe has so many bigger plans and ideas for each of us," Kapoor emphasises.
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At the NGO, Kapoor got work as a resource person - her first job after the visual impairment. She mentored and taught other people with disability, engaged with the community, did outreach programmes, upskilled blind people. "They were enriching years of my life," she says.
It was also there that Kapoor met a man to whom she would be married for eight years. She tied the knot in 2002 but it was not a happy relationship. There were conflicts, gaslighting, passive aggression. She ran the house alone. "And yet, outside, people told my husband he was so great for marrying a blind woman. Who knew what was happening within the four walls of my house?"
"For blind men, families say ‘hum chote ghar ki ladki leke aye kyunki usse kaun shaadi karta.’ As a blind woman, even today, it’ll not be easy for me to find a man to even date. The expectations are completely reversed in the case of a man. It is still easier for a man with a disability to find a partner than for a woman."
"What I don’t see, doesn’t bother me": Payal Kapoor's mantra
Despite industry knowledge, it wasn't always easy for Kapoor to find a job - (lockdown was especially difficult and she doesn't have a job today) - but she got connected with a hotel where she worked for 12 years. Meanwhile, she also began writing and giving talks about her life with disability. In 2020, she began an innovative YouTube channel - Rasoi ke Rahasya - a platform "all about learning to cook as blind people."
It's no secret that in India, disability sensitisation is overlooked. Recently in Gurugram, a young woman in a wheelchair alleged differential treatment after the staff of a famous pub told her to sit outdoors. Kapoor similarly recalls an incident when she was starkly made to feel like an outsider.
"I was at a conference - the only woman and blind person there. Coffee break happened and I got up like everyone else. Usually, the person next to you helps you. But before I could turn to anyone, the room was empty and I was left standing alone. Nobody waited for me. It was a humiliating experience."
"But I realised I didn’t need to be quiet anymore," Kapoor says. "If you’re looking at my face and don’t like what you see, too bad. I don’t see myself and yet I know I’m great. Over time, I have become ME again."
"Some years ago, I was invited to speak at an institute in Hyderabad. Two girls were escorting me towards the canteen. I stopped. I could smell something really lovely. I asked them, 'Are there flowers growing nearby?' They were students on campus, yet had to search for the frangipanis that Kapoor knew were there without looking.