Introduction to Palliative Care

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As I mentioned I heard from my mum that an anesthesiologist from Calicut had been nominated for a Nobel prize for his work in community palliative care, so I headed back to my grandparents’, hoping to learn more about this community initiative and its success.  I was attempting to change my study more towards looking at the movement of citizenship away from rights and more towards active responsibilities…development from below…or something like that. I took a taxi down the mountain from Mcleodganj and then boarded the small proper plane headed towards Delhi.  Delhi airport was a cosmopolitan wonder. I was not used to seeing so many foreigners in India as they weren’t many in Kerala. I had a beer and a club sandwich (which was incredible as all club sandwiches are in India). I was already missing Dharamsala, it was cooler than the rest of India, and had a special calming aura about it, also the Korean and Japanese restaurants there were absolutely fantastic. I wondered if I had made the right choice in abandoning the Tibetan issue and choosing to go back to Kerala.  After a brief nap, I boarded the plane towards Cochin. This was followed by a bus and a car ride until I was finally back in Calicut.

I woke up early the next morning so I could catch the local doctor at the Sparsham Palliative Care Society outlet near my home before he started off on his rounds.  I was told that he’d be leaving for his once-a-week patient visits at around 9:30 am. I took an autorickshaw, which has fast become my favourite form of transport, and arrived at the centre just after 9.  The centre was at present simply a house that had been rented out by the palliative care society. There was a welcoming room with a desk and two plastic chairs in front of it, where the doctor was seated.  Behind that was a room where medical apparatuses, such as bedpans and cotton swabs, were being sterilized. The room to the right housed the computer and some wheelchairs that had been donated along with a bed.  It was the kind with the adjustable angles that is common in hospital wards. I learned that this bed had also been donated and would be given to the patient who was deemed to be most in need of it. The small room off to the left of the welcoming foyer held the medicine and was where the food kits were assembled.  The room was busy, and I was told this was because this was the one day a week that the doctor was in house. There was a fan spinning in the centre of the room but its coolness didn’t reach the far end of the room. I was already hot, and the sense nervousness added to the heat. Sweat began to drip down my back as I waited in the back until he had spoken to all the visitors.  

As this was my first interview I made a few choices. I decided not to record the conversation as this was the first time I was meeting the doctor and didn’t want to intimidate him, although, in reality, I was the one who was intimidated.  I had my notebook with me and a few ideas that I wanted to talk about, but I let the conversation take its own route. I had only corresponded with him through email, so I started off by clarifying who I was and what I was trying to do.  Looking back at my notes I wish I had recorded the interview. I think I started off the interview by asking him if this program was filling a gap left by the inadequacies of the government- an idea that had been at the centre of my thoughts.  He said that this was not necessarily the case and that there was an opportunity for government programs to be supported by community-based initiatives. He said it was essential that citizens ‘do things on their own’ in a place like this, and that the government was seeking public community help.  

Even though the palliative care centre was run totally on donations without any government funds, there was a local government program to identify disabled persons in the community as a kind of census.  This allowed for the public to react immediately in the case of palliative care. This allowed for what he called ‘spontaneous, yet organized help’. The community care centre was a way in which citizens could work as a group to provide the needed help which the doctor felt was more effective than working as individuals.  Society in Kerala has strong family values and people were already taking care of the elderly and those with terminal illnesses on their own, be it family or neighbours, but this centre allowed for it to be carried out in a more organized and effective fashion. People were already doing good practice without being aware of it as ‘participatory citizenship’.  This reminded me of the case of the Noordoostpolder in the Netherlands, where residents were already performing good energy practice without necessarily seeing it as such.

I then went on to ask the doctor if he knew what the reasons were behind people volunteering at the centre and the larger program that covered the entire city.  He replied that they all had different reasons, but the important thing to note was that the public was sensitized. He said that Kerala was particularly good for this because the state has the highest literacy rate in India and has a long history of social movements.  It came to my attention that a major factor in the idea of citizenship from below was a sensitized public. “If the people are aware, they can make a difference.” The doctor remarked on how in other states these kinds of initiatives were carried out by NGOs or private organizations whereas here it was done by the public themselves.  

The doctor went on, without me prompting him, to say that this (palliative care) was a social issue so we have to look for social solutions.  The medical system cannot provide support for things like losing a job, losing mobility, social stigma, and the loss of other things that result from such illnesses.  What these individuals need the most is emotional and social support, and what gives rise to an effective social movement is people who are trained and empowered. The society’s goal in a way was to demedicalize illness, and as a public society, the idea is it will be able to maintain quality and standards.  He went on to say that charity in the form of just money has limitations, and that actually performing activities does not have those same limitations. I asked him what drew him towards the issue of palliative care.

He said for him it was a rights-based issue- the right to life with dignity.  With every population ageing, it is inevitable that they will need care. The problem with chronically ill patients is that it is a long drawn out process, and the challenge is how much can actually be corrected.  He felt the people who volunteer and work at the society are aware of their potential and the idea has always been to teach them basic skills so that they feel that they are empowered. This idea was not limited to palliative care and could be extended to any public society.  He said that he was making an investment in his own future, not necessarily just performing charity work, and that everyone involved with the program was doing the same. His responsibility was to see that this initiative sustains itself until then.

In terms of how the society worked, the money was mobilized by the community.  He said the idea of volunteers was different from the west in that there they are there to fill in gaps.  The idea here is to have the volunteers lead the program, and that they have a sense of ownership. Moreover, this sense of community ownership is integral and is what sustains the program.  He concluded by saying that if the community leads the program, then they see all illnesses as suffering even though palliative care was started as part of cancer care. It was then time for him to leave on his rounds, and make his weekly visits to the scheduled patients in the community.  I left as well after having organized an interview with the secretary of the society in the afternoon.

I returned later to interview the secretary of the society, a Mr Soman.  It was not as busy, as the doctor was no longer there. Again I had chosen not to record the interview and to rather take notes as he spoke.  I somehow found this more attuned to the situation. I wanted to learn the inner workings of the initiative from him and to get a general idea of what it looked like in practice before seeing it for myself. Rather than an interview, it was more Mr Soman talking, with a few interspersed questions from me, and honestly, I felt this was more informative than some kind of Q and A session would’ve been. He started off by telling me that everything at the society is done by the citizens, with no help from the government or corporation.  

There were between 10 and 20 volunteers at any time, and they were all retirees.  Their activities included administrative work, going on home visits, distributing pamphlets/raising awareness, and raising funds.  I asked him why all the volunteers were retirees and he replied that the youth were not really interested in such initiatives. He said that there were some high school aged volunteers who would come from time to time as part of their involvement in the National Social Service, or scouts.  Together with the kids, they did some coin box collections, and other methods of fundraising included placing money boxes in shops that allowed them. I asked him what moved him to join the cause, and he told me that he became aware of it when the society started a bank account at the branch that he was managing and that after retirement he had free time so he decided to join.  There didn’t seem to be any sanctimonious reason for him participating, he just felt he was doing his part as a citizen.

His major axe to grind was that, according to him, there was no interest from the government in helping the cause.  He also went on to emphasize that the society had no religious or political affiliation. Their biggest challenge at present was funding.  They wanted to have their own building, where they could have in-house OP, physiotherapy, as well as just a daycare kind of place for affected people where they could mingle with one another.  This is because a major cause of distress for them is loneliness and a lack of social interaction.  I reflected on the old age homes I had volunteered at in Canada and just more generally on how there always seemed to be some kind of forum for the disabled or elderly to interact with each another and others, be it an old age home, strip mall, coffee shop or anywhere else.  A major inhibitor to this in Calicut that came up in later interviews was the problem of mobility within the city. It is not an easy city to move around in if you have any kind of physical limitation. I organized to shadow the volunteers on a home care visit in the following days and left to reflect on the information I had gathered.

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Return to Kerala

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I returned back to Calicut, Kerala in the south of India, where my grandparents are when I heard of another lead.  Citizen and community initiatives had always been successful in Kerala, owing to its high literacy rate and traditionally communist government.  Everyone was always involved in some sort of committee or another and was always organizing a review or something of the like.  I remember reading an article in my master’s study that was about how Unilever attempted to build a demand for soap and popularize it in India.  The first place they attempted to employ their strategy was Kerala, but it wouldn’t take root because the people were too sceptical and didn’t want to align health with a private enterprise.  So quite evidently Kerala houses a highly critically engaged and educated population.  Accordingly, nature is preserved reasonably well, and it’s not as crowded or dirty as the rest of India.

The issue with this, though is that the state has not always been the most receptive to industry, thus employment is an issue.  You either work for the government or you own a shop if you stick around here.  Strikes are a weekly occurrence and activity is heavily controlled by unions.  Walls are adorned with pictures of Che, Fidel, Marx, Lenin and all the other socialist heroes.  There’s a strong affinity towards Russian film auteurs such as Tarkovsky, and authors like Dostoevsky.  And there’s hardly a road where you won’t see a flag with the old sickle and hammer.  Most of the men go away to work in the Gulf state, leaving behind their families.  The state survives on remittance from places like Dubai, Bahrain, Saudi Arabia, and Kuwait.  One of the most incredible things about India is that every state or at the very least every region is totally unlike another.  Each with its own food, culture, religion, language, and the people even look different.  The difference between North and South India especially is immense.

I came back to Kerala because I had heard that one of the local anaesthetists had been nominated for a Nobel prize for founding a community palliative care initiative in Kerala that had grown into a wide network of care centres run entirely without government subsidies and that he would be giving a talk at Queen’s University back in Canada.  My mum had a friend who was, in fact, volunteering at the local wing of the centre near my house, so I decided that it was definitely worth an investigation.  She got me in contact with the doctor who was assigned to this centre, as each one had one doctor on their books.  I decided to interview for me with the expectation that this service was citizens themselves filling some perceived gap in the services provided the government.  But what he told me was more interesting than that.

 

First Day in Mcleodganj

IMG_5734I started the day off by posting up at a cafe down the street from my guesthouse- Cafe Budan.  I didn’t have much of a clue what I was actually going to research so I used the free wifi on offer to read up on some academic papers to try and develop a theoretical framework for my thesis.  The menu in this place was pretty western- Indian filtered coffee was replaced by espressos and cappuccinos, while gluten-free cakes and chocolate croissants lined the pastry display in the front.  It definitely appeared as though they were catering to a particular kind of customer and I probably wasn’t it.  The guys working the counter spoke English really well and treated most of the foreigners who came in with a warm familiarity which led me to believe they were regulars.  When I walked in, there wasn’t a single Indian customer in sight.  A group of foreigners who spoke English with some sort of European accent sat on one of the tables outside.  Beside me sat two Thai men: one dressed as a monk and the other in plain clothes.  The monk was counting prayer beads on a string with his hand while conversing with his friend.  Across from them a picture of the Dalai Lama hung high on the cafe wall.  I thought that the monk might be on some sort of spiritual pilgrimage or perhaps he lived here now.  The place had a distinct international flavour to it, as did the entire town- you could easily forget that you were in fact in India.   An older foreign man was sitting outside, with a rolled cigarette in his hand, talking to one of the guys who worked in the cafe.  A few of the people walking by shook hands with the cafe workers lounging out front.  There was certainly an aura of community about the place.

I had been to Mcleodganj nearly a decade ago with my older brother when we taught English as volunteers and did odd jobs at the vegan cafe and restaurant we were based out of.  I was sad to see the owners had since sold the place on, and that the incredibly friendly Tibetan who ran the place for them, who became our friend and helped us out immensely, was no longer there.  The few narrow streets that make up the town seem ill-equipped to deal with the influx of traffic to the region.  Cars, taxis, rickshaws, bikes, and scooters seem to pass by in an endless stream, leaving little room for foot traffic.  This was a far cry from the last time I was here when a car passing by was something of a rarity.  As I followed one of the tapering streets down to the main square.  I saw something incredible…Pizza Hut!  I resisted the urge to indulge mainly because I’m quite poor right now and need to save my funds for the necessities aka beer.  I guess the place was getting somewhat globalized the last time I was here, but nothing like this.

The streets were more crowded now than I remembered.  There was hardly a moments silence and the air was filled with car horns blaring, engines roaring, and hordes of stray dogs barking.  There were a lot more Indian tourists walking the streets than the last time I was here.  The language was a bit of an issue in some places.  My Hindi was extremely basic and learned from Bollywood movies I had watched when I was around 10.  In Kerala, where my family is from, the main language is Malayalam and it bears no resemblance to Hindi, which is what most people speak in North India.  North India is like a different country to the south, and Mcleodganj still yet another.  I honestly felt a bit like an alien today.  An Indian, who grew up in Dubai, moved to Canada, worked in Korea, who was now here doing fieldwork for his masters in the Netherlands, with no real idea of what he is actually doing.  I felt more apprehensive trying to engage with strangers here than I did in Holland or Canada.  It was also the first time I was somewhere new just totally on my own.

So I did what any upstanding person would in the circumstances.  I ducked into the nearest bar/ restaurant to get a big bottle of Kingfisher beer- the perfect lubricant for these kinds of situations.  I told myself I was just going in there to jot down some notes and since they had beer, the only logical thing to do was to have one.  At the table beside me sat a Tibetan family made up of what looked like the grandparents, parents, and child.  The young boy was speaking English with a North American accent.  I wondered if they were a family that had once lived here and then moved on to ‘the promised land’ of the good ol’ US of A.  I was still struggling to pin down something really new or interesting that I could say.  I thought about analysing the town using a concept we had learned in our class on mobility: Auge’s concept of places and non-places.  Was this just a place where mobilities passed through one another on the way to somewhere else- some kind of liminal space?  Or was there something more fixed about it?  What kind of threads came to be entangled here and what did the whole mess really look like?

With a little liquid courage, I finally worked up the nerve to ask the family beside me where they were from.  The lady at the table replied that her parents had moved here from Tibet, when they lost their country and that she herself had moved on to San Francisco around 6 years ago.  She said she was back here to visit her family.  I was an idiot, though, because I didn’t push the conversation further and ask her what I really wanted to know: did this place feel like home to her?  I still needed to warm up my ability to interview strangers.  The questions didn’t seem to form in my mouth because I wasn’t quite sure what I was looking for.  I remembered a quote from Lincoln above my seat on the train from Calicut to Kochi on my way here:  “A goal properly set is halfway reached.”  Mine was evidently not yet properly set.  I’m not usually one for inspiring quotations but I think Abe was onto something there.

I walked town temple road to the main Tibetan temple in the town, hoping for some divine inspiration.  The place was definitely calming.  It was being prepared for a conference directed towards the Dalai Lama, wherein he would listen to different members of the scientific community who would present their findings to him.  I had met someone on the plane, on the way here who worked for the NGO that was organizing the conference and ran into him again at the temple.  The temple was brimming with tourists, both Indian and foreign, snapping away their selfies, as well as the monks that populated it.  I spent a few moments hypnotized by the turning prayer wheels with the mantra: Om Mani Padme Hum,  inscribed on them.  The temple and the town itself felt a bit sleepy, maybe it was the fact that today was the anniversary of the Tibetan uprising day.  I myself felt a bit sleepy and decided to make my way back to the guest house for a nap.

 

Part 5: The Passage to Cambodia 1

The following morning was not the easiest of times to say the least.  We both struggled to get up and clean ourselves up.  But we had to be up and out of there to meet the guide who would take us to the bus.  He met us outside the hostel and led us towards the main road, herding other passengers on the way, as is customary on any bus journey here.  Every step was a struggle in the heat, and the idea of being on a bus for an unknown amount of time wasn’t the most attractive of prospects.

We were at the head of the pack of bus goers, and once we got to the main street the guide shouted out to me, “bah led cala!” as he climbed on to the back of a scooter and took off.  I have to admit I had a hard time understanding most people in Thailand and Madonna served as the interpreter of the group even when people were speaking in English.  I thought oh he wants us to go to a street named “baht led cala”- that sounds quite Thai and plausible.  As I was surveying the street signs, Madonna looked at me and said, “You idiot.  He said bus red colour.  It’s right there!”  Oh he meant that huge red bus right in front of us.  I see.

As is the norm in these parts it’s hard to actually get someone to tell you what bus is going where and if the one standing right in front of you is actually going where you need it to go.  The decals on the bus spelling out every city from Chang Mai to Pattaya aren’t exactly helpful either.  I saw a few tourists who I thought were from some Andean region, owing to their facial structure and use of Spanish.  I’ll interject here and say that I am obsessed with the idea that I can tell where a person is from simply from the bone structure of their face.  It may or may not be real, but I’m going to keep on pretending that it’s my superpower.  For the record they were Chilean- a fact I learned from peeking at their passports later.

 

Part 4: One Night in Bangkok

That night we wandered into a large open restaurant, parallel to Khaosan, which seemed to be full of foreigners and had a huge menu.  We both ordered several dishes to try as we are both quite fond of Thai food.  To start with we had those delicious spring rolls that seem to taste so much better here.  And for the main we had a spicy green curry and some crispy fired shrimp.  Thai food has a great aroma and spice to it which makes you want to just keep eating more.  The smell of basil, lemongrass and all their other aromatics filled the air.  Everything that everyone around us ordered just looked and smelled absolutely delectable, and being the definition of a glutton, it was quite hard for me to abstain from continuously ordering more food and icy cold tiger beers.  Come to think of it ‘icy’ may be a bit of an exageration- I don’t think Southeast Asia has quite yet got the concept of adequately chilled drinks.  But hey, who’s going to complain about a one dollar beer?  Definitely not me.

We made our way back to the main street and the night time festivities had kicked off.  The street was packed to the brim with travellers looking for a good time and locals looking to service and likely exploit their every whim.  Bars spill out on to the street in Khaosan and a trusty Sangsom bucket is never too far away.  We were looking to make it an early night because the bus was quite early the next morning, but how often does that ever really happen here.  The two of us were feeling quite mellow but that magic mixture of Thai whiskey/maybe rum?, red bull, and coke got us going again.  We ended up at a rooftop balcony place with live music which I had frequented the last time I was here under similar circumstances.

The bar didn’t seem as lively as usual at first, save for a few Japanese tourists going mental in the back.  Trust them to have a good time anywhere.  Their energy was infectious- it even got us going regardless of how spent we were feeling earlier.  Then came the band that totally blew the lid off the place.  A stunning Thai girl and her accompaniment broke out into Daft Punk’s “Get Lucky” and the whole venue went crazy.  Everyone was dancing with everyone- even me with my two left feet- and all the faces had one look- pure unbridled bliss.  Every song from then on was perfect, and every man in the place was enamoured by that beautiful singer and her incredible voice.  The little else I can remember from that night is eating two pad thais back to back off the street and being asked to clean up by an angry security guard, which seemed a bit unnecessary, seeing as the entire street was covered in garbage.  Those street pad thais on Khaosan are positively heavenly when you’re sober, and when you’re a little drunk, they’re even better.  Funnily enough if you’re interested in the history of Pad Thai, I wrote what I consider a work of art on the topic, that’s probably somewhere on this site.

Part 3: Khaosan

We had both been to Thailand before on our own trips and weren’t keen on spending too much time there, especially in Bangkok.  Of course Khaosan has its way of making you stay which I had become well aware of the last time I was there.  Madonna said she had stayed in a pretty nice hostel there the last time she was in town and, they had a vacancy.  We booked a couple of dorm beds online and made our way to Khaosan in a taxi.

It was reasonably early in the day when we got there and as soon as we stepped out of our taxi an on to the street, all the memories or lack there of came flooding back to me.  Here we were in the centre of the backpacking universe on a street like no other- littered with travellers from all over the world (in particular Europeans), street stalls, staffed by the burmese and nepalese, selling everything from Oakley’s and beats to Harvard diplomas, and the aroma of all sorts of delicious and exciting things to eat and drink.

I was anxious though.  The beast within  me had been brewing since friday night and I had to find refuge.  We checked into the hostel, which was expensive by Bangkok standards but likely reasonable for anywhere else.  None of this mattered to me though, because the toilet was absolutely pristine and I had rarely before felt such sweet relief.  The both of us took a bit of a nap and decided to hit the street later for a bit of food and drink.  Nothing too excessive we hoped as we planned to head for Cambodia in the morning.

First things first though, as we left the hostel, we had to book the bus to Cambodia and I had to get some passport photos for the visas.  I got the pictures from a combination tattoo parlour and passport photo studio because those definitely exist all over the world, and we set off on a bit of a food tour of Khaosan and the surrounding area.

Part 2: Arriving in Thailand

Once we arrived at Don Mueang airport, that familiar combination of heat and humidity hit us like a rogue wave, confirming that yes we had in fact made it to Southeast Asia.  Thailand had a familiar feel to me, it always reminded me of Kerala, and I felt instantly comfortable there.  The familiar hordes of Chinese tourists, interspersed with weathered backpackers, sporting dreads and elephant pants, made for interesting people watching, while we spent what felt like an eternity in the immigration line.

It was interesting for me to look these backpackers up and down.  Were they weeks, and maybe even months into their trips?  Or did they just always look like that?  Like every subculture, they have their uniform- unkept yet purposefully so, bearing trinkets acquired along the way- with the more well off ones sporting Fjallraven bags and Patagonia outerwear.  I have to admit I harbored an immediate distaste for them for no apparent reason other than that I felt that they had this air of superiority and judgement around them.  To them it would have been obvious that we were just beginning our trip, and definitely weren’t backpackers by trade (at least I wasn’t), looking very much like we were setting off together on our first high school field trip.  But, you know what fuck them.  I was happy in my BB8 t-shirt. Although I did wonder how different would we look on our return.  Would I become…ONE of THEM??