When she woke up after a short afternoon nap on November 22, 2013, two days after her 24th birthday, Nandita Venkatesan could see her mother and brother talking to her but could understand nothing; she could hear sounds but could not comprehend them. The noisy world around her almost fell silent. Her hearing loss was 80 per cent in the left ear and 50-60 per cent in the right ear. It has since deteriorated to over 90 per cent in both ears. The villain was the second-line anti-tuberculosis injection kanamycin that she had had for about three months.
Venkatesan’s first tryst with tuberculosis (TB) was in August 2007 when she was diagnosed with intestinal tuberculosis just a month after starting college in Mumbai. Popping 10-15 pills a day for 15 months and battling with the side effects of medication left her with little time to enjoy the pleasures of college life.
As if once was not enough, TB came to haunt her again; she suffered a severe reinfection in 2013. “The memories of the first bout came back to haunt me,” she says in an email. But what she did not realise was that the bacteria were intent on striking a body blow.
The TB infection was severe and medicines alone were ineffective the second time around. “The gnawing abdominal pain was far more severe than the first time and continued despite the medication. I convulsed with acute pain and it started hampering my day-to-day activities. Anything I ate immediately hurt my stomach and passed out undigested,” Venkatesan recalls. The only option left was to undergo a surgery to remove the infected portion of her intestine.
As she was wheeled in to the operation theatre, she reassured herself that things couldn’t get out of hand and she would be on the road to recovery very soon. But that was not to be. Normal life after surgery was short-lived; in a week, she was back in a bigger hospital as her condition had turned critical. Days stretched to months and one surgery turned to four as the infection spread. She underwent three major operations back to back and began second-line drugs after the second surgery when doctors found TB had spread beyond the intestine and she was not responding to first-line drugs. But the culture test result revealed that she was not infected with drug-resistant TB.
Solid food was ruled out and only small sips of water every hour were allowed. Nutrition plays a crucial role in recovering from TB but she had to subsist on IV fluids alone and this took a huge toll on her body. She became a walking skeleton after losing 23 kg. Her hair started to fall out. “I vividly remember going for a small walk in the hospital and seeing a reflection of myself in a glass window — with bald patches. I couldn’t recognise myself,” Venkatesan says.
“I was in hospital for two months. Since TB had started to spread to other parts of my body, it led to serious complications. Honestly, I didn’t know if I would survive, all I knew was that I was not going to give up,” she says.
After the surgeries, Venkatesan thought she was done with her quota of pain. Little did she realise that the worst was yet to come: her ordeal had just begun with permanent hearing loss. Soon she was hurtling from one problem to another — low BP, low sugar leading to memory loss on five occasions, and elevated creatinine levels.
“It felt like I would never be able to laugh again in my life,” she says. “But I soon realised I had to make the best of the worst situation. I could not sit and feel sorry for myself. In concentrating too much on the closed doors, I forgot to pay attention to the small windows of opportunity and hope. The way out, I felt, was to accept the situation and learn from it. Acceptance helps you move on and find solutions rather than wallowing in self-pity.”
Surviving two bouts of TB infection has taught her to be a fighter and never give up even when pushed to the edge. The inner strength that once turned her into a warrior while in hospital emerged once again. She went back to dancing, her first love, but this time without the luxury of hearing the music. “I took to dance as a way to emerge from my closet and as a means to regain my shattered confidence. I saw it as a means to channel my pent-up energy and exasperation,” Venkatesan says. When she learnt that her dance school was organising a programme, she embraced the opportunity.
Determination, perseverance and imagination have been her strengths. Though profoundly deaf (she can only hear sounds as loud as the bursting of crackers), she slowly learnt to grasp dance steps and co-ordinate with her partners. The dancer in front of her acted as a cue and she memorised the beats, lyrics and steps. She could also feel the vibrations of the rhythm with the help of a hearing aid. “I also use number counts to grasp the beats. For example, if the beats are: Tai…Ta Ka Ki Ta, I convert them to numbers 1…1-2-3-4,” Venkatesan says. “Dance has proved to be incredibly cathartic. It has helped me embrace this ‘rebirth’ and the next stage of my life with more conviction. I guess, ultimately, the desire to dance won against the instinct to flee!”
It may not be an exaggeration to say that Venkatesan has mastered the art of adaptability. Having learnt to lip-read quite well, she has now started learning sign language. She has also learnt to handle everyday challenges like crossing the road by following a person. Venkatesan has been working in a financial newspaper in Mumbai since April this year. “I took a big step towards conquering my disability and kicking TB out of my life,” she says about her decision to work.
Besides actively participating in several programmes to raise awareness about TB as a survivor, Venkatesan is thinking big. She will be participating in the international group action.org’s TB R&D media and public speaking programme to be held in Berlin in January 2017. She also intends to pursue a doctorate in a few years.
“I am far more comfortable in my skin than before. The deafness does bother me sometimes but I have understood what I am capable of,” she says. As a message to other TB survivors, Venkatesan says: “The key is this: be brave; be determined. Take it as a second chance at life. Besides, when life pushes you over, you ought to push back harder!”
5 thoughts on “Nandita: Deaf but not out”
It’s scary to know that TB or its medicines can affect hearing. I have intestinal tuberculosis, and I have been taking medicine for 7 months. I am supposed to take the medicine for 9 months. I don’t know since when I had TB, but I had similar symptoms: the unbearable stomach pain and frequent uncontrollable vomiting throughout my Ph.D.The doctor suggested for the surgery of the intestine, which I opted to wait till the medicinal treatment gets over. I wanted to understand why did I get intestinal tuberculosis. Is it that most of the Indians are the carrier of mycobacterium, and under certain circumstances, they get activated? Can that cause be stress? My Ph.D was extremely stressfull.
Yes, nearly 50% of the Indian population is infected with TB (latent TB) with is under control due to robust immune system. Once the immune system is down, the infection turns into active disease. So yes, stress can affect the immune system and could play a role.
The good thing is that, she started dancing..it gives more active respiration so that the Mycobacteria cannot stay in lungs much. The negative side of this is, meeting crowd…anyone from the crowd may carry Mycobacteria. I guess hearing impairment could have been caused by demyelination of auditory nerves because Mycobacteria are known to affect myelin sheath of nerves.. or Kanamycin could be the cause not sure.. I could be wrong though. But a sudden impairment in hearing surprised me. Very often people miss very simple and powerful home treatment for mycobacteria. Lemon juice. Yes, it does the trick. Reference: https://www.ncbi.nlm.nih.gov/pubmed/23695675
Lemon juice by itself cannot kill Mycobacteria but it tunes the host immune system to kill mycobacteria. There is some research to support this but vitamin-C is not the lone player in this.
Nandiat had extra-pulmonary TB. To be precise, it was TB of the intestine. So dancing may not have much connection with clearing or preventing the bacteria from residing in the lungs. But good exercise and diet will strengthen the immune system and help her keep the bacteria at bay.
Yes, you’re right….I didn’t think about that. Mycobacteria usually roam in and around the body. The predominant settling at lungs vs. extra-pulmonary locations depend on the homing signals driving the macrophages to specific locations. Anyway dancing might help to change metabolism towards Fenton reaction if she takes enough dietary vitamin-C. I wish if she tried lemon juice before kanamycin, she could have averted the issue of hearing impairment. Not sure though …but lemon juice is a simple thing to try.
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