Updated: Sep 8, 2020
I remember many years ago, in 2006 when Rani was one of the first girls in our Aftercare home. Already her CD4 count was low enough for her to qualify for free ART (anti-retro viral) from the Indian government. However, trying to get her to take her HIV medication was another battle altogether. She just couldn't grasp the life and death importance of taking the medicine.
The strain of the virus I have seen in 70% of our rescued girls develops slowly. There are simply no symptoms for years and years. The girls have a vague cerebral knowledge that they have some dreaded disease that sometime in the future will evolve into a life-threatening set of symptoms that ultimately will culminate in her death after HIV turns into full-blown AIDS.
Emotional reactions to this knowledge are myriad. Some deny the truth completely, others want to give up on life immediately because they can't grasp the concept of time or the lengthy workings of the disease. For many, the stigma the disease carries adds a sense of societal shame and worthlessness to their already low self-esteem.
The physiological ramifications of the disease are just as challenging as the emotional ones. For most patients, there is a strong physical aversion until their body accepts the drugs. They have to persevere for a few weeks until the reaction phase is over. I hear the cure often feels worse than the illness. Watching Rani's terrible reaction to the cocktail of the three antibiotics in the ART medications was heartbreaking.
So many of our girls, including Rani, prefer the seemingly innocuous progression of the disease as it quietly and painlessly erodes their immunity to the violent and often painful process of checking the development of the disease with ART. With no concept of disease, germs, viruses, and bacteria, our ability to explain the lightening speed of replication of the HIV virus, the importance of taking ART at the very same time every single day to ward of mutation of the virus and development of resistant strains to the medication, are words in vain.
The reality of puking in a toilet 15 times a day in reaction to the life-giving drugs just seems like the world's biggest oxymoron. The disbelief in Rani's eyes as we told her again and again, “This really is good for you!” went straight to my heart. How desperate we were for her to be faithful in the care of her body. Yet we were so thwarted in our capacity to make her understand.
In-depth HIV counseling could only do so much. In the end, especially after she left the shelter of our home, she was the only one who could make those choices for herself. She was the only one, who in spite of her migrant shifting from city to city with a husband who is an itinerant worker and young dependent children, could take her ART card to HIV government hospitals. Only she could make the decision to go in for her monthly check-ups, CD4 counts, and collect the free ART medication. She was the only one who could carefully, religiously watch the clock and take her medicine, daily, at the same time without missing a single beat. No matter what dirt-floored hovels she lived in, no matter how much rice her alcoholic husband brought (or didn't bring) home, she was the only one who could have the unearthly discipline needed to slow the disease.
Needless to say, Rani didn't have that discipline or comprehension needed to stay on ART consistently. Her life was absolute chaos, and she was simply concerned with surviving each and every day. Fighting an invisible enemy when she felt OK most days just didn't make any sense to her. And so slowly, inevitable, her immune system weakened, and sickened, until she must have looked at her husband one day and said, “Let's go to Ooty and Freedom Firm.” That’s how it is. They are dependent on us for a while, then they become independent and leave the “nest” and then when things get really bad, we see them again, and we have the chance to reach out once more.