Asha Jyoti

[Jean-Louis Lamboray]

About three weeks ago, our SALT team visited Asha Jyoti, a centre caring for People Living with AIDS. This visit shattered into pieces my thinking about the organization of health care. My mind and soul are still processing what I saw, heard and felt. I’ll try to share why.

We traveled from Koppal to Kushtagi, about 40 minutes away, through rice, millet and sugarcane fields. On the way our car squashed millet spread on the road, its wheels replacing the hard work of women, as they would have had to pound the grain for hours on end in their nearby villages. The Center is located a few hundred yards away from the main road, not far enough to be shielded from the continuous honking of passing lories, yet close enough to nature to hear birds singing. To the left, we discover a small stone building, the dispensary. Behind a hedge of bougainvilleas, a set of small buildings, some of
them with thatched roofs. Slightly further stands a bigger, polygonal building,
its tile roof nearly reaching the ground. These are the wards, an administrative
building and the kitchen. People rest and hang laundry to dry on a wide yard.
Everything blends in the local scenery.

Soon, we are invited into a large thatched and rattan rotunda, and our conversation starts. Patients, family members, staff take turns to talk and share. “I consulted many clinics to get my anti retro viral therapy, but I was about to die. Then someone told me about Asha Jyoti and I decided to give the center a try. Here
things turned around for me. People are so caring for each other, that I started to live and hope again!”

“I work as a truck driver,” says a man. “I am here to help my wife who is slowly recovering from AIDS. When I need to go for my job,I can leave with a peaceful mind, as I know that family members of other patients will attend to my wife”.

“My family rejected me. At first I was desperate. But here, I found a new family. I can always come back here when I am down…”

“One mother came here, very sick, with her 5 year old child. Her child would bring her some yoghurt, but the mother was too weak to absorb even that little liquid. So, the child went to sit under a tree and started a hunger strike. Community members asked him what his strike was all about. The child responded. I will eat again when my mom will start eating again. When told the mother started eating again and recovered.”

Story upon story, people tell us about their love for each other. That little place becomes wonderful!

I ask to staff members: “This center feels so different to any place I have visited over the last 40 years. What
is your secret?” One lady responds: “Before, I used to assume that I knew the main needs of our clients, and to address those needs, I would go ahead and tick off the boxes from a standard list of
tasks. But then, two sisters came to the center one day, the elder very sick,
both grieving their mother who had just passed away. The younger sister
understood that she first had to deal with her eldest sister’s grief. She would
take her on her lap and care for her as she was her little daughter. I don’t assume
anymore that I know my client’s need. Unless I find out, my care may not bear
fruit”.

After the meeting, I pay the doctor a visit. A man just a little younger than me, Dr. Anna Rao tells me with pride that he just passed the Indian course of AIDS medicine. Not a simple task, with distance and face-to face courses interspersed. We soon go behind the polygonal building to eat
lunch together with patients, staff and family members and talk about life…

Dr Rao is an expert who knows his place. He knows how, when, why to prescribe AIDS medicines. But that does not make him the boss of the place. Rather he blends into the community of Asha Jyoti, so that each client gets the greatest chance possible to fully recover into a meaningful life.

So far I had always seen the health centre with the nurse or the doctor as the person in charge. Now I wonder: why not organize every clinic, every hospital, and every nursing home in the simple, human way I observed in Asha Jyoti? If that is the way we want it as clients and citizen, why not make it happen?

[Rituu B. Nanda]

Hi JL,

There is another difference between other community care centres and Asha Jyoti. While other care centres turn away terminally ill patients, Asha Jyoti staff provide loving care to the patient till the last moment. And then what disturbs those who evaluate the care centres is the high rate of patient deaths in Asha Jyoti.

Regards,

Rituu

[Laurence Gilliot]

Hi Jean-Louis,

This is wonderful experience and it seems like this place is really special. Can you tell me more about the way they are organized in the hospital? If the doctor or nurse is not in charge, who is then? I understand that there way of interacting with patients is different but does that change also the 'structure' of the place?

Thanks,
Laurence

[Olivia Munoru]

Dear JL. Thanks for this story. It resonated with me for many reasons, particularly the woman's discovery that we can never assume somebody's needs. A message applicable in all parts of life, not just health.

I am going to send this blog to my friend who dreams of setting up something like this in Indonesia.

[YERUVA ANTHONY REDDY]

Dear JL,
Nice to here this story from ASHA JYOTI. I was there in the SALST visits and it has inspiremed
in a great way. Each inmate, staff working had stories to inspire people. You can run thousands of episodes about care, love and passion for each other in the centre.