Beyond The Stigma: Honoring My Father's Life With HIV

A couple of months ago, I met my father’s boss who had known him for more than fifty years. Throughout the conversation, he fondly related to me his memories of them working together. As I listened to his praises of Papa, I felt bittersweet. Not only because Papa is not alive today to listen to these words but also because he never received all this love and affection when he was alive. The reason - he was diagnosed with HIV and succumbed to the same. 

My father was a lovely person and played a huge part in who I am today. Coming from a working-class family, life was not easy for him. However, his relentless struggles paved the way for his children to attain progress and become good human beings. Being highly empathetic, he taught it to us through his actions. He never gave us a pep talk on how to be helpful, instead spent his time inspiring us as he went about his day cooking, doing household chores, combing my hair and the like. 

In March 2009, as I was appearing for SSC board exams, he fell sick, so much so that he wasn’t able to stand on his own. I had never seen my dad so weak. We consulted our family doctor who gave us some medicines and injections after which he was temporarily better. However, the week after that, he almost collapsed. Thinking back, I feel I had begun to lose him from that day onwards. His condition steadily deteriorated as he began to lose weight drastically. He developed nausea and lost all his strength. Eventually, he could barely stand and could only walk with support. Alarmed, our family physician suggested a battery of tests. 

I remember the day his HIV results came positive - 10th March. Everyone was shocked. I didn’t know how to process it. From my science books, I knew that HIV/ AIDS can’t be cured fully, and it attacks the immune system of the person which can cause multiple other diseases and patients need to have medicines for life to control the effects of the virus. It was too much for a 16-year-old child to accept that her father had a life-threatening disease and would have to take the medicines for life. Doctors at the KEM hospital immediately asked my mom to undergo the ELISA test along with the rest of the family. That even included my brother who was two years old at the time. We were terrified that one of us too would test positive. Thankfully the tests were negative. Even now, we undergo these tests yearly as a family, though the risk after Papa’s death remains next to none.

After Papa’s diagnosis, a new chapter had started in our lives and was breaking us, day by day. Doctors immediately started papa on ART (Antiretroviral treatment). Soon, the whole family got used to the lingo- CD4 count, viral load, ART, Hep- B, C, D etc. Being the elder daughter, I could feel the effects of his illness keenly. As mom had to work and become the income provider, I had to start looking into Papa’s diet, medicines and care Immediately after my board exams. Every month, I visited KEM hospital to collect his ART medicines as Papa was incapacitated and in bed.

Back then ART was available only at the 4 biggest public hospitals in Mumbai - Lokmanya Tilak Hospital (Popularly known as Sion Hospital) Nair, JJ and KEM. Though Sion Hospital was just 2 kilometres away, papa begged me to collect ART medicines from KEM as he was afraid that familiar people would see me and guess what I was there for. Papa acutely understood the taboo around HIV, and AIDS which leads to humiliation and ostracization of patients and their families and did not want that to happen to us. I still remember the sound of his voice as he made this plea, and the memory breaks me whenever I think of it.

During my visits to KEM for ART, I noticed that people in ART queues always covered their faces with scarves, masks, caps etc. An aunty in her fifties who had stood behind me in the queue one day, had asked, “Beta, you look very healthy, when did you get the infection and how? Why do you come here alone? Did your family also abandon you?” 

As soon as I told her that I was there for my dad’s medications, she advised me to cover my face with a dupatta or a scarf. 

“People always boycott us. Who will marry you?” she asked with genuine concern on her face.  

As a firm believer in scientific temper and a wannabe neurosurgeon back then I rebelled, never covering my face. Soon, Aunty and I forged an unlikely friendship in the long ART lines, having snacks together in the hospital canteen after we got our medications. 

My rebellion, however, did not account for the shame and hate we would face from family. When my grandparents and other family members realized about his disease, there was a lot of gossip. A few of our relatives paid a customary visit to Papa only once during this entire ordeal, maintaining proper physical distance. The people who came to visit did not even have water at our home. It broke our hearts. 

Neighbours and family friends too stopped coming home when they came to know about Papa’s disease. We felt extremely alienated when we needed support from people. Some neighbours even stopped their children from playing with us. 

Papa’s health started deteriorating as people cut off the ties with our family. I feel he succumbed to the stigma more than the disease. When he asked us why don't people visit him, we lied that we didn’t allow visits because we wanted him to rest. The lie didn’t hold water for long. When his CD4 count dropped below 400, we had to admit him to the hospital, where he stayed for a month. Nobody except my mother and my siblings visited him in the hospital. I had to be at home in Mumbai taking care of my siblings while my mother was there with him. 

Away from his children, parents, and siblings, he felt deserted in that hospital.

Within two weeks his health deteriorated, and he was diagnosed with meningitis and jaundice. Last three days he was just lying on a bed, mostly unconscious. He was 39 kg the day he breathed his last. 

He didn’t receive a good farewell even after death. As doctors had told us not to uncover the body and perform any religious rituals, we strictly followed the same. However, people stood at such a distance to pray for him that we felt ostracised even then. My dad, a gem of a person, definitely deserved a less painful and more dignified departure than the one he got. 

Even after we returned to Mumbai after the funeral, only one family from our neighbourhood came to meet us and support us. We are indebted to the Jadhavs for holding our hands when we needed it for survival. Our paternal uncles even tried to disinherit my mother from the ancestral property saying, “These children and bhabhi won’t live much longer, they are rogis, why do they need a share in ancestral property?” My widow mother didn’t receive any respect and empathy from relatives and how could she, after all her husband died because of HIV! 

People passed comments when they used to see me even after Papa’s death, "Jo hua bahot bura hua. Iska baap balbir pasha ka ad dekhta toh aisa nahi hota re, isliye mai tere ko bolta hu idhar udhar muh mat maar ( insinuating that he may have had sex with prostitutes more than unsafe sex)." 

I often think we empathize with people who are diagnosed with cancer, heart disease etc. We celebrate their journeys if they survive/combat. Why then do we not celebrate HIV patients and their struggles? Would it not be easier for everybody involved if the stigma were removed and we dealt with the diseases without any myths and misconceptions? After Papa’s death, I lied to people for the first two years that he died of jaundice. Mom would also pressure us to not reveal this to our new friends. But after a point, I became too tired of this and started telling the truth. People who stayed embraced me and my family and gave me hope. I stopped caring about those who didn’t. 

This journey, though it was painful, eventually taught me many things. Each of us in the family has processed the trauma of his passing and the public humiliation that came with the disease differently. But what it has taught us collectively is this- scientific temper, empathy, compassion and love will always be able to help people in medical emergencies more than anything else, drawing inspiration from Savitribai Phule who died serving patients of plague in Pune in 1897.

I made friends in the ART lines, and in the hospitals I went to, to source ART for my father. I was able to meet wonderful doctors and medical staff who helped us and found that I could turn to the science teacher from my school for support. I found belongingness in Sevalaya, where I met many young children diagnosed with HIV living together in a community. Most of all, I reached a place of acceptance, from where I could speak my truth - that my father died because of HIV. 

This journey also inspired me to look into the larger public health issues surrounding HIV. The irregular supplies of ART back then caused suffering to many including my father. Since then, whenever I visit public hospitals for various other reasons, I visit ART centres and inquire about whether the supply is regular. As a citizen, I feel keeping a check on the system is the bare minimum I can do.

This story is not fiction but the author’s lived experience.