By Jamuna Rangachari
Jyoti Dhawale, an outstanding acivist in the field of HIV and AIDS, faced and triumphed over severe challenges to reach where she has today, says Jamuna Rangachari
I may not be able to talk on the phone. So, the only way we can communicate is if we email each other,” replied Jyoti, when I emailed her asking for her telephone number. Jyoti has a hearing disability. This would seem harsh enough until one learns about the trajectory of her life and discovers that lack of hearing is the least of the challenges she has met and triumphed over heroically. Jyoti, who lives in Mumbai, was told by her family that her hearing impairment arose from a vehicular accident. However, doctors have told her that the impairment is so severe that it could only have occurred through physical abuse. This may have been possible as Jyoti had often been ill-treated by her step-mother, and had led a lonely and helpless life in her childhood.
Naturally, when a man took an interest in her and wanted to marry her, he seemed to represent the perfect escape from her hellish life. Things were fine until she missed her period. Despite her vehement protests, her husband forced her to abort the foetus. This happened three times, and in the process she was transfused with infected blood.
When she was forcibly taken by her husband to abort her fourth child, and the medical report came positive for HIV, she was given a choice by the doctors themselves for the first time: To carry on with the pregnancy, or go ahead with MTP (Medical Termination of Pregnancy). She chose to go full-term despite her husband’s opposition, and gave birth to a healthy child who was HIV negative.
Meanwhile, her husband decided to divorce her as he was in love with someone else. He even took his son with him. That possibly was the lowest ebb in a life that had thus far known far more sorrow than joy. Even today she expresses anguish at the thought that her son was growing up believing her ex-husband’s second wife to be his mother, while she herself had no chance of having a relationship with him. At that stage in her life, her confidence and self-esteem were too low to fight the situation legally.
Even when it came to fighting against her HIV status, she was helpless as she had destroyed the medical reports of all the three procedures, and had no way of knowing in which hospital she had contracted the disease, or how to initiate legal proceedings against them.
They say it is darkest before dawn. Sure enough, while battling her bleak circumstances, life sent her a precious gift, the gift of love. She met her present husband, Vivek, online. Over time, their love for each other strengthened despite her HIV status.
With creditable nobility, Vivek was unswerved by her situation for he understood that HIV was nothing but a virus that could be kept under control with strict adherence to medicine just like a diabetic patient had to keep his blood sugar under control with insulin.
In fact, when Jyoti’s father, the only person in her family she was close to, died, Vivek was a pillar of strength and support, and was with her throughout.
She says, “Love has no boundaries. If you really love someone, you will accept the person as they are, and educate yourself to understand how to better care for them.”
They got married in 2013. Even Vivek’s family accepted her as he educated them about the ailment, and freed them of the superstitions that have grown around it.
She acknowledges that Vivek’s presence was the best thing that could have ever happened to her. “His presence in my life has brought out the best in me. I have learnt to be content with whatever I have, learnt not to expect, just to give.”
A new beginning
The strength she drew from Vivek’s presence and love filled her with a new energy and dynamism, and a newly found self-esteem. She started doing all that she had been wanting to. At that time, she was the creative manager, social media and public relations head for Black Swan Entertainment, where she and her team produced stories of women empowerment for a show on Doordarshan titled, Stree Shakti. Today, she wholly concentrates on the welfare of people living with HIV through an NGO called No Tears Foundation. She is a prolific activist fighting for the rights of HIV and AIDS patients. She is ambassador for countless organisations and many NGOs support her causes – the most recent being the Pakistan-based Beydaar. She is their ambassador, leading the HIV department in Pakistan, breaking the taboo and myths that revolve around HIV. Like in many countries, in Pakistan, nobody talks openly of this subject. And patients are treated often when it is too late. All this adds further urgency to her goal to educate the public that HIV is just like any other illness that can be kept under control through proper care.
Today, she is well known in the domain of activism, primarily because she is easily approachable. Having craved for love, she knows the pain that people deprived of love undergo. “There is so much hunger for love today,” she says compassionately, as she sets out to share love and understanding with everyone.
As an activist, she shares her own experience of being HIV-afflicted. She is unashamedly candid about all aspects of her life on social media, interacts with anyone and everyone on Facebook, answers every question, listens to every query, and liberally showers her followers and friends with compliments.
In her personal life, Jyoti makes sure that she eats healthy, exercises daily and takes her medicine without fail, while undergoing lab tests every six months. A common myth she wants to dispute is that living with HIV precludes marriage to someone who is not. In fact, as we have seen, she herself is a proof of this.
She is clear that loving oneself makes a huge difference. “Love yourself and accept yourself for who/what you are,” she advises. Jyoti meditates and chants regularly to keep her inner connection strong, and says, “What food is to the body, chanting and meditation are to the soul”.
It is often said God comes closer and more real to people who have handled challenges. Truly, Jyoti has overcome all her battles primarily due to the strength of her soul.
About the author
Jamuna Rangachari is a writer who has authored three books for children, and compiled and interpreted Teaching Stories-I and II for Life Positive.
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