The Chaos Within - The bell tolls again
Lata (Counsellor), Jyoti & HansPrakash Gaikwad died on Monday night.
That's two clients in the space of eight days.
Donne's bell has tolled again. It is a hollow sound. It mirrors the hollowness we feel within whenever we lose a client.
We never managed to get Prakash to fully engage with what DISHA was trying to do for him. Upon learning he was HIV+ he went into severe depression and by the time DISHA found him, he looked defeated... and was. I met with Prakash frequently to begin with, both at the centre and at his home. All he did was stare vacantly into the distance. Santosh the field worker in Prakash's area visited him every day, and often they would sit in silence together, but Santosh felt that at least Prakash was aware that DISHA was determined to be there for him.
When Prakash started to get sick we made sure he had the best possible care. We sent him to Sahara too, but Errol, like DISHA failed to connect with Prakash. He didn't let any of us in. Susan, our HIV/AIDS consultant on hearing about Prakash's case told us that Prakash's depression seems to be coupled with the shock of learning that he was HIV+. In August, within two weeks of being at Sahara, before he had fully recovered, he insisted upon returning home. This has been the most assertive he has been in the ten months we had known him. He refused to attend our nutrition programme and while his mother faithfully shuttled up and down with food for him, she complained that he hardly touched it.
On Friday we admitted him to Sassoon General. On Monday he was in and out of consciousness, and in the early hours of Tuesday morning Prakash let go of life.
Did we fail?
We failed to connect, we failed to find a way through, we failed to make him understand about life after HIV, life with HIV...
Life after HIV? Life with HIV? To many this is not possible. HIV/AIDS is death incarnate. To speak of life is to pretend, it is a denial of the inevitable. We, DISHA, disagree. I work alongside people who say NO to this perception of inevitability and YES to life! We work with people in the community who refuse to give in, and they burn so bright that those who don't understand them get burnt.
Jyoti.
Why do I always return to Jyoti? No particular answer. Her name is derived from 'flame' and her light is close to going out. She is in the 4th stage of HIV, she has a CD4 count well below 200, and so clinically she has full blown AIDS. I spent the morning with her today, and I didn't want to write my blog, until I had done this, because I knew that what I have to say about her can't take another week.
Jyoti's aunt and uncle who used to support her with gifts of money and dry rations, have refused to help her anymore because she stood up in front of the community and declared that she is HIV+. Today I heard that they had asked her not to attend the 'Celebration of Life' event, and defiantly Jyoti had refused. Her other uncle, who also helps her when he can - this is not a community of plenty - began to argue with his sister and told her that they cannot abandon their niece. Jyoti silenced them both.
"I will work. I will find a job. I will ask Hans sir to help me."
Her strength and defiance is humbling. Her trust in DISHA underlines the responsibility that we have undertaken. Her situation demonstrates the need for compassion and understanding in a community that has a long journey ahead of it.
Perceptions of HIV/AIDS must change. I suggest that Prakash was a victim of perception and Jyoti struggles with it everyday, as do all our clients in Tadiwala Road. The way forward is hard. It is a complex network of roads that we must journey on. HIV/AIDS association with death is thought to be a deterrent in India. Wear a condom or you will get HIV/AIDS, if you get HIV/AIDS you will die. This deterrent, which we have used too, needs reworking. This was made very clear to me during the Celebration of Life event when Mukesh and his team performed the dance that ended with death. It jarred with the image fresh in our mind of Manisha, Jyoti and Anita standing before us and asking us for compassion and support. The death that is associated with HIV/AIDS when people like us in the field talk about prevention and control is not necessarily the antithesis of life when we speak of care for people living with HIV/AIDS.
Or is it? If it is - and my insides seem to twist and contort to confirm that it is! - then how do we move forward?
Any answers?
posted by Deep Griha at 12:23 am
2 Comments:
Hi Hans
I am really impressed by the passion you and your Team posses, the empathy and passion will help you find answers.
I could not attend you invitation for the celebration of life as I was traveling and was not in India at that time. I am glad that it turned out to be such a beautiful event
The day you feel it would end or decide to end is the day you have died. I read this about Boris Becker once, at 17 he had won the Wimbledon and had achieved his ultimate Goal in life. That night he went under heavy depression and wanted to end his life. He resurrected out of this depression and went on to become a legend.
What makes people live? I feel it’s the sheer encouragement which the environment around him gives him. She or he lives to see another day, another moment where she or he is accepted among her or his people and beloved ones.
None of us are immortal and death is evident, whether through HIV, cancer or sheer old age, but does that mean we stop living on the last days. NO. The Answer is “YES”, yes I will live, Y – Yearning to live and move towards your chosen Goal and Desire, E- Endeavor to move towards that goal and S- Sweet taste of Success which leads you to the Spirit of triumph. The Triumph of Life..
Prakash lost that spirit somewhere and Jyoti carries that flame. The failure with Prakash seeing the JYOTI at the other end has brought out further Chaos within and would be the driving force for you and your team to look at alternative methods and processes to ensure that the others see the value of life.
I totally agree with you that WEAR A CONDOM OR YOU WILL DIE campaign is not the solution to AIDS and will in no way eradicate this problem. Probably Educating people is the solution to ensuring people see a life after HIV, the critical factor here the acceptance of the community, like you wrote in the case of Jyoti, her near and dear ones are rejecting her today because she openly claims that she has HIV, so where is the issue? Is it with Jyoti or the people around her? Are the people who matter to you to the most moving away from you, doe that make you stop living?
Educating the people around an HIV affected person would be also one of the Key Factors which will enable people to see a life with HIV.
May GOD bless you and your team in all your endeavors and All The Best
I think that the problem with HIV is that it brings a timescale abrubtly into someones life. We are conditioned to believe that we have maybe 60 + years to live and to be told to readjust to single figures is something that I think most would find it impossible to take. Put it in perspective, if a healthy young adult were told that you were going to die in the next five years and that they could almost count down the days it would destroy the toughest of characters. Theres a saying about the going getting tough and it couldn't be any more relevent. There are some incredible people in life who will never get the recognition they deserve while footballers who drink their life away get a statue in Belfast.
Half of the battle is fighting the causes of infection and the other half is fighting until the end. Fighting injustice, prejudice, ignorance and most of all the long, slow battle with HIV. Justice is a notion that only seems balanced to those who are at a gravitational disadvantage on the scales, for the rest its a case of keep up the good work because this is a fight that won't end.
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