'If you want to be happy, Be!' Jyoti Dhawale on being HIV positive and living a full life
Between 2004 and 2006 Jyoti Dhawale had three abortions. Filled with shame and disgust at what she had been forced to do, she destroyed the three reports from the three different hospitals where she had undergone each of the procedures. When she went in for her fourth abortion in 2006, this time at a different hospital again, she ended up not going through with it. This was because the report was ominous – she was HIV positive.
Thirty eight year old Jyoti cannot recall a time when she was not oppressed. Being the daughter of an Air Force officer, her childhood seemed one of privilege, on the surface. But the reality was quite another story. “I came from a broken family and had a typical ‘Cinderellaesque’ life, courtesy my stepmother. She would lock me up in a room and starve me. Lunch was a luxury for me. Second helpings did not exist in my world,” says Jyoti. Seeing her half-sister treated with love and kindness compounded her own feelings of worthlessness.Despite this treatment, Jyoti does not harbour any resentment against her father: “I am his first born. He had trouble expressing his feelings for me, given the atmosphere at home, but everything cannot be expressed or told. It can only be understood.”
Jyoti suffers from bilateral sensorineural hearing loss. “I can hear sounds with decibels of 80 and above. That is equivalent to the hoot of a railway engine. I follow conversations face to face – through lip reading. Otherwise, I strongly rely on the written word for communication. Also, I suffer from certain speech defects. I cannot pronounce letters like C, X and S. It is not just I; any person with this hearing disability will have a problem in pronouncing certain alphabets, and even following them,” she explains.
She has been living with this disability since she was three. She was told that she lost her hearing when she fell down from her father’s bike after a tyre bust, though she herself has no memory of the accident. “Doctors tend to disagree with this account which was narrated to me by my family. According to medical science, the hearing damage is so severe that it is likely due to physical abuse,” she adds.
Growing up Jyoti wanted to be a fighter pilot like her father. “I wanted to fly a plane, to touch the sky, and cover myself in glory. I wanted to go ‘Where Eagles Dare.’ I have lost count of how many times I have watched the movie, Top Gun. I still drool over Tom Cruise in his uniform with those Aviator glasses. Right from childhood to my growing up years in the Air Force camp, the drone of fighter planes used to send goose bumps down my spine. How I love these mean flying machines,” she exclaims.
She continues, “Unfortunately my disability shattered those dreams. But I don’t regret that anymore. I have come to
believe that whatever happens; happens for the best. My handicap is a blessing in disguise.”Not just her aerial dreams, but ambition of any kind took a backseat when her biological mother made a reappearance in her life. By all accounts it was not a happy reunion, though she refuses to reveal more. Jyoti was in class nine when the reappearance of her biological mother disrupted her academic performance – so much so that she had to repeat the class. She somehow finished her high school education from the National Institute of Open Schooling, New Delhi, but could not make her way to college.
When her – ex-husband made an appearance in her life, he seemed like the answer to all her prayers. Broken from years of abuse and desperately craving love, warmth and a family of her own, he seemed to represent the perfect escape from her hellish life. “It was a love marriage. I was entranced by his gentlemanly behaviour.” Things went fine until she missed her period for the first time in her life. “When I missed my period, I remember rushing to the store to buy a home pregnancy test kit. Oh! The joy of being a mother; of having a child of my own!” That joy lasted till she informed her husband of the news. “He told me to go in for an abortion,” she recalls.
Jyoti says that she protested vehemently, but it fell on deaf ears. The second time she discovered she was pregnant – instead of elation she was filled with dread. “I asked him why he couldn’t use a condom. His answer was ‘I don’t like it.’” Her body had adverse reactions to oral pills. “I was on vaginal contraceptives. But the failure rate of vaginal contraceptives is very high, especially if correct procedures aren’t followed. It requires 10-15 minutes of waiting period. Imagine a person wanting to have sex in the middle of the night, and you aren’t prepared. And when you want to insert the pill and request your husband to wait, you are forced upon.”
She did not realize it then is clear to assert now that she was the victim of marital rape. “Rape is RAPE, whether in marriage or outside it. Anything that is ‘forced upon’ the body without consent is Rape. If a man does not like to wear a condom, then, a woman, even if she happens to be his wife, has the right to refuse and say NO. Why have I gone through this thrice and ended up being HIV positive? Why am I living with stigma and discrimination – I blame the government first and Society next! The government – which does not recognize marital rape as a crime; and this society – which blames the woman for everything.”
Jyoti does not absolve herself of being an accomplice in the abortions she was forced to undergo. She genuinely did not believe she had any alternative. “I was wholly dependent on him, financially and emotionally. I was naïve and submissive. I didn’t even know of the existence of the Domestic Violence Act back then. It was only after I was beaten, abused and left for dead that I realised the importance of self-esteem and self-respect.”
When Jyoti received news that she was HIV positive, she was three months pregnant. She had been transfused with infected blood while undergoing one of her three abortions. Given that she had unwittingly destroyed the medical reports of all the three procedures, she had no way of knowing in which hospital she had contracted the disease, or how to initiate legal proceedings against them.The final pregnancy, her fourth, resulted in a healthy baby boy, mercifully born HIV negative. Her ex-husband, who had been pressuring her to terminate this child as well, demanded a divorce soon after the birth, and took his son with him. She is now fighting an uphill legal battle to secure visitation rights with her son. Jyoti says that it was the worst time of her life.
“I was dealing with the shock of having learnt that I was HIV positive and postpartum depression simultaneously. Amidst this my husband informed me that he had been having an extra marital affair and would be leaving me for her. So I needed to become financially independent, and began searching for a job. I was not yet ready to give up on my marriage. But when my maid informed me that my husband had been bringing his girlfriend to our home behind my back, I knew it was over.”
Jyoti has no regrets over her failed marriage. Her ex-husband is now married to his girlfriend. What causes pain is that her son is growing up thinking her to be his mother, while his real mother has no chance of having a relationship with him. Having grown up with a stepmother, it seems a cruel of twist of fate that her child, too, should suffer the same. “Whatever was written in the divorce agreement was NOT mutual. As per the court, it was the duty of a judge to call the husband and the wife and hear both sides of the story – which in my case has never happened. I was never produced in court, never produced before any judge. A forceful signature means nothing,” she fumes. “I am just looking for the right lawyer who can come forward and help me with this battle,” she says with quiet determination.
Jyoti met her current husband, an HIV negative partner, in an online chatroom. “He was a ’chat’ friend. He sent me a request not once, not twice, but five or six times. I kept rejecting him until I decided to scan his profile. What fascinated me (not ‘attracted’, she clarifies) were the biker jacket and Honda Fireblade next to him! That got me to finally accept his request. At that time I was working for an IT firm, doing the graveyard shift. This ‘Hi how are oyu doing, I am fine, I hope you are fine, take care, bye’ saga continued for six months. Then came a day I could never imagine.”
Her father passed away on 28th June, 2011. She wanted to pay her last respects but her stepmother would not allow her near him. “He was all I had,” she says. “Anger and hatred for my stepmother, and grief over my father’s death was eating me up. My best friend was in Dubai. However, Vivek, my new friend, drove down all the way to be with me, emotionally and physically.” They planned to meet the next weekend. “My husband says it was love at second sight for him,” Jyoti says.
Vivek’s parents were naturally apprehensive about their son marrying an HIV positive partner. But when they saw how happy she made him, their objections dwindled. “Their fears were dictated by ignorance,” she says. Once they came to know that HIV is nothing more than a disease and that it can be controlled by medication, they accepted her wholeheartedly. The marriage opened up a whole new world for Jyoti – being loved and accepted for who she was for the first time in her life gave her a sense of belonging and purpose that she had not experienced before.
Jyoti says that her life of sorrow and suffering taught her empathy, but her marriage to Vivek taught her the value of compassion and forgiveness. “Vivek was the best thing that could have ever happened to me. 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 give. I have learnt how to forgive; to throw away hatred. I have also become wiser; more mature.” Jyoti continues, “My second marriage is what changed the course of my life and made me what I am today. That was the beginning my dream to make the world a better place for people living with HIV/AIDS – against stigma and discrimination. I believed in this dream. I chased it. And it has come true.”
Jyoti is riding a professional high that shows no sign of dimming. She is the creative manager and social media and public relations head for Black Swan Entertainment, where she and her team produce stories of women empowerment for a show on Doordarshan titled, ‘Stree Shakti.’ She is a prolific activist fighting for the rights of HIV and AIDS patients. She is the ambassador for countless organizations and many NGOs support her causes – the most recent being the Pakistan based Beydaar. But she believes her biggest achievement lies in her being approachable. “What I love about myself is not being famous but being easily reachable and approachable. I believe in reaching out and being connected to people. I myself have been deprived of love and care and that’s why I understand the pain that isolated people suffer. That’s why I do the work I do. There is so much hunger for love!”
Once she embraced the idea of activism, she began to use the learnings from her own life as model – a champion in the face of adversity. 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.
Jyoti says the reason it took her this long to be happy is because she misunderstood completely the true meaning of happiness. “Happiness is from within. You don’t get it from others. If you want to be happy, BE! Don’t let the situations, consequences or the surroundings affect you. Motivation also comes from following people who inspires you.” Once she found inspiration in her life, Jyoti says the happiness followed of its own accord. My role models are Mother Teresa and Princess Diana. Mother Teresa taught me how to love unconditionally and Princess Diana taught me how to give selflessly. In my own small way, I want to do the same for others.”