Reflections: The reality of living with HIV and AIDS

I write this, not with the intention of depressing anyone. It’s more to release my pain and just to bring to each one of you the realities around living with HIV and AIDS.

Last evening, after attending a Board meeting of the Positive Women’s Network, I wanted to visit one of my favourite members at the HIV wards, as I heard she was reacting strongly to the ARV she had been started on recently. Let’s call her Anula and her husband Nimal, who happened to be in the adjoining male ward. Princey and Naseer wanted to visit the patients and hand over some adult diapers.

The surroundings of the wards are deceptively peaceful, with the cool air wafting through. You can feel the warmth of the nurses and attendants respectfully attending to its patients. The hospital actually calms me when I walk through as it is open with a lot of space. This is of course until I reach the wards. For some reason I have been finding it extra difficult to deal with what I witnessed and felt last evening.

Anula couldn’t conceal her happiness when she saw us-giving us hugs with the saline drip attached to her arm. As Princey wrapped her arms around her, she just broke down. And I could understand why. She was diagnosed 3 months ago. This is after her husband was diagnosed as he would have contracted the virus through blood transfusions since he had been dealing with haemophilia since 1986. Anula’s life has taken a 180 degree turn. Fortunately her 3 year old is HIV negative. But Anula’s life is crumbling around her. She is 24 years old, has a beautiful smile and her eyes always brighten up when she speaks. She will be ok if she sticks to her cocktail of medicines. Her husband, Nimal will not be as fortunate. The consultant doctor, Dr Ananda informed me during the meeting that he seems have reached the full blown AIDS stage. This is the key reason why I wanted to see Anula. For some reason, I feel so connected to her life and I can feel her helplessness of trying to keep everything together as a young mother and wife. She is 12 years younger than me, but I can’t help feeling that I could have been easily been the one experiencing all of this.

I walked into the men’s ward to see Nimal-it was an effort for me to hold back my tears. He was looking with unseeing eyes into the distance. He was extremely gaunt with a catheter hanging on the side of the bed to drain his urine. Princey, with her usual infinite love and compassion stroked his hair and spoke to him. There was no reaction from him. I moved forward and spoke to him and his eyes shifted to meet mine. I hoped he could really see me. Through this little connection, I tried very hard to convey any energy/ strength I hoped I could-to make him want to get strong again for his wife who was in the ward next door, for his baby who is now cared for by his parents.

There were others, who had sadly been diagnosed too late. Too late, as they had not been aware of the symptoms. They were just lying there-as they have done in the past few months and even for 1 or 2 years. I stroked a lady’s head. Even though she had come to the stage where she couldn’t speak and was gaunt like Nimal, her eyes gave me an expression of shock, as though she couldn’t understand why I was being kind to her. I felt guilty that she should even feel that way-she deserves so much love and care.

“Aluth ekkanek enawa, aluth ekkanek enawa!” (a new person is coming in) was being shouted by an attendant as he rolled the newcomer into the male ward. Let’s call him Bandula…Bandula had been treated for the past few weeks at a semi government hospital and had just been diagnosed. Princey felt strongly that the hospital would have decided to transfer him out no sooner had they found out his condition. Bandula looked as though he was in shock. He was pale and just sitting on the bed as though he didn’t understand what was going on. Princey spun into action and stood next to him, talking and giving him his first counseling session. She advised him to eat the food that was being given and to take the medicine, even though it may feel quite strong. She gave him her’s and Naseers (Naseer is basically Princey’s right hand at PWN+) numbers so he could contact them anytime. Naseer took his prescription to buy the medicines and arrange the tests that would be necessary to ascertain his condition. I was so thankful we had decided to drop in at that time.

I walked out with Princey and Naseer and just hugged Princey, but had to quickly pull back as I was on the verge of breaking down. I was so proud of her strength and compassion. I just prayed at that moment and asked for strength to be able to give the best of what I could, knowing that my best would never be enough to help Nimal, Anula or even Bandula.

(The humble beginnings of PWN+ in 2009, Princey in the middle and Naseer on the left taking a pledge to be committed to PLHIV)