Friday, August 21, 2015
As result of Kabir’s illness last month, we fell short of teachers in senior school, but saw it as a window of opportunity to travel. So for three days, our older students visited schools and health centres in KG Halli, on Nagavara road in north Bangalore.
In my role as a doctor, I have been working in the urban health project of the Institute of Public Health with this community of 42,000 people since 2008.It would be described as a low income melting pot of humanity with three languages and three religions represented in 0.7 square kilometres of city space. It was interesting to see the context afresh through the eyes of these twelve young teenagers.
They had the opportunity to visit, with the field staff, Ms. Nagaratna and Ms. Leelavati three schools, where they interacted with students of classes five, six and seven. Some visited homes of people in these crowded lanes along with Dr. Mrinalini and all got a detailed tour of the Sarvagnya dialysis centre with Dr. Triveni and Jomon, the manager of the unit.
There shared their experiences with the students and some parents at Shibumi through a slide presentation with pictures and stories as well as a poem and essays which some of them wrote. The interaction was a rich with questions and answers and Ms. Nagaratna travelled across the city to attend.
Some comments from the experience:
“The streets were crowded and the lanes narrow, often we had to be careful to avoid stepping on garbage.”
“The classrooms were a quarter the size of our library and there were 40 children in the class!”
“The children were very creative in what they made from the newspaper rolling activity. I had never done it before, but I learned along with them.”
“It was clear that children were not used to asking for help or helping each other in the class, but were quick to respond when we encouraged it”
“In the big school there were 1, 500 children! And that was the only school in the ward with a playground!”
“Many looked like they came from poor families, but most understood English quite well !”
“It reminds me of my old school, where they would hit the kids.”
“It seemed clear they did not get to play games often, and they enjoyed prolonging the game. But they are so used to being instructed they could not think for themselves”
“The patients were so young in the kidney dialysis unit, and many very poor. And their old parents had to support them, because they cannot earn a living.”
“So is the diabetes caused because they eat too much sweets?”
“We found people did not know that you must control your diet in diabetes.” “And sometimes they would not buy medicines regularly because there is no money for it.”
“There was a boy from Bidar who had to live alone in a room in the city because there is no place close to home he can do this.”
And the one that touched me profoundly. “Roopa Aunty, How many years did you work in KGHalli?”
Me: “Five years, half the week. Why do you ask? “
“I didn’t sleep last night, thinking about it.”
You can also read the essays and poem written by the Isauras in response to the trip.
On Tuesday morning we were brought to KG-Halli to visit IPH (Institute Of Public Health) which was where Roopa Aunty had worked earlier. We soon found out that the area was broken up into many wards and we would be spending our time in ward 30. The van dropped us off near the main IPH clinic centre and we were divided into three groups. Kailas, Mansi and I were to go on home visits within ward 30.
The aim of the house visits was to find out what the response was to the IPH diary. This diary was given to a sample of people some months ago; all of them were suffering from diabetes. We would be visiting them and finding out what the response was towards the diary after all these months.
The personal diaries were given as an alternative for the doctor’s prescriptions that are received by the patient. So, to keep tabs of doses of what medicine to take when, this diary is a much more convenient way of having your medical records in one place rather than on loose flying sheets of paper which can easily get lost.
The responses would be collected based on one-on-one interviews with the member of the household who was given the diary and was suffering from diabetes. We were led by Dr. Mrinalini who was mainly responsible for interviewing the members of the household. She took along two of her assistants who speak the local languages in that area really well. These languages are Urdu, Tamil and Kannada.
We walked through the broken, mucky and dusty streets into sudden narrow corners leading from the pavement inwards into an area of closely cluttered houses followed by a strange sense of solitude.
After a few moments of avoiding puddles and looking down to avoid garbage piles every few feet away we entered our first house.
We visited a total of three houses, and we noticed that there were clear gaps in communication between the IPH staff and the patients. People had not clearly understood what the purpose of the book was. Some of the patients thought the IPH diary was to be used for diabetes or high blood sugar problems only (because that was what people suffered from mostly within that area). In some cases the diary was never really used at all, was thrown away, forgotten or sometimes they were torn apart! In discussion I was told that by the IPH staff. So lack of money results in not going for check-ups for 6-7 months. We met a diabetic man who had decided to take his own doses of Insulin (which lowers your blood sugar). So you see, overall health is not a priority for them. Free medication cards are given to people below the poverty line, and these are often thrown away in the frustration of wanting immediate possessions such as food, money or a good job instead.
It was thought-provoking to see through a glass with different sets of values and ideas, a whole other world out there so disconnected from ours and yet so strangely linked, like an inescapable circle!
A couple of hours away is a place bustling with sounds.
Cramped, polluted and smelly, what is this place we have found?
People from all cultures, their apparel so unique to their ways,
This place we have come to know, is worth a visit I must say!
The dialysis center, a building bathed in peach,
Located central to the ward making it convenient to reach.
The entire ground floor is dedicated to the poor and their kidneys
For the cost for them is nil, treatment is without a fee.
Lying on the beds, the patients are bored and tire quite fast.
I can only imagine how they must feel when their four hours have gone past.
Although the patients suffer from boredom and pain thrice a week,
They smile and see the positive, I can hear it when they speak.
The spirit and attitude with which the dialysis patients live their life,
It’s truly an amazing thing, especially with all the strife!
On the first floor amongst the crowd there are a few draped in white.
Doctors and nurses confined to their little sites.
As the patient walks through the door with a certain state of mind,
Being embraced by the doctor, they slowly start to unwind.
Having being told of a diagnosis, the patient is now at rest.
Repeat it or not, there is nothing that can be done about the test.
Devskanda and Yannick
The dialysis ward was brightly lit, well ventilated, and was neither too cold nor to hot. It was not a very large room, and therefore one could see all of the ten beds in the ward; next to each one of which sat the large squat machines in whose innards the process of dialysis took place, clicking and beeping. The room was empty, as the clock had only just struck eleven, and the first patients would only arrive at a quarter past that hour.
To the casual onlooker, these environs would not have seemed grim or foreboding, and yet my stomach lurched and a sense of dread welled up in my stomach as I imagined the dialysis machines at work.
We whispered to each other in muted tones, discussing the functions of various aspects of the dialysis machines, and the intricacies of the procedure itself with Jomon Kuriakose, one of the managers of the institution. As we talked, we moved along the rows of beds, and then retraced our steps to end up in our original position. Occasionally, Kuriakose would lift his arm and gesture at a component of one of the machines, and, in his lilting Malayali accent, deliver a lucid explanation of its operation. During the breaks in our dialogue with Kuriakose we could discern the soft whirring of the air-conditioning machines in the background. When Kuriakose was satisfied that he had demystified – to the best of his abilities – the functions of the dialysis apparatus, he took leave of us and retired to his position at the reception. It was but a couple of minutes after his departure that the glass door of the ward swung open, and a tall man clad in a dhoti and a shirt walked in. His gait served to distinguish him immediately from the other men who might have been accoutred as he was: his stride was short, slow and measured; it was not purposeful and nor was it regal – it was the stride of a defeated man. At glance at his eyes told me immediately that such was indeed the case – the fire that burns in my eyes, in your eyes, in everybody’s eyes, had, in his eyes, faded to a dim, reticent glow; dull, and almost totally obscure by the sadness contained in his expression.
He walked past us and, with the air of a man well accustomed to what he was doing, he slowly slid into the last bed from the wall opposite us. He slowly unfolded the blanket at his feet and draped it over himself in a manner that told us he had done it many times before. He held out his right arm and patiently waited for the nurse to connect him to the machine that was the closest to him.
While Shekar, as we later learned his name to be, was being handled by the nurse, we heard the door behind us creak again. The newcomer had exactly the same gait as Shekar. His eyes too, no longer burned with the fire of life. They told a miserable story of grief and illness; of reduced circumstances; of pain and fatigue. The chubby cheeks that one playfully pinches on the face of a child were, on this man’s face, the symptoms of failing kidneys. Disturbed and unnerved, I turned around to see my companions and Roopa Aunty striding towards the bed of that other unfortunate, Shekar.
We stood together beside his bed as Roopa Aunty softly asked him if we, as students and teacher, could ask him some questions about the history of his illness and of his life. He assented with the slightest of nods of his head.
Shekar was Tamil, and hence Roopa Aunty asked him questions in that same language. As they spoke, the story of his life unfolded in our heads, painting grim pictures, not unlike Rembrandts, in our minds—
Shekar was, judging by the ages of his children, aged between thirty and forty years. His two children, of ages five and three years, get their respective stomachs through the labour of their mother. He (Shekar) used to work on a daily wage basis, but was forced to leave his job after his dialysis began. He had earlier spent fifty thousand rupees on dialysis at St. Johns Hospital, and had come to know of Sarvagna Dialysis Centre only later. Now, dialysis is free for him, but he is not likely to be able to resume work in the near future.
While Shekar’s life story was unfolding, he made soft, restricted, gestures with his arms. As my senses absorbed all the information they were receiving, I tried to imagine what it would be like, as a poor man, to have to undergo treatment such as dialysis three times a week, for four hours each time.
From where did he get the courage to plod all the way to the dialysis centre three times a week, when each time he knows that he will have to come again only two days later, or face the pain and fatigue? Are not the dim motes of light in his eyes the ghosts of a once bright flame; remnants of the past that might, at any time, vanish, along with his spirit? Is not going to the dialysis centre the only thing that he can do for the rest of his life until he dies?