Kasia - Your father who was diagnosed with prostate cancer in 2010 received palliative care provided by the palliative system set up by Dr R. Rajagopal in Kerala, a region of India. I have read that this system is very innovative and many health care systems around the world take it as an example. How did your father and your family benefit from it?
Vel - When my father was diagnosed with prostate cancer, for the first three months, he was under medication and chemotherapy. But it was at a terminal stage of cancer and he was in a lot of pain. The doctor who was treating him in the Regional Cancer Centre at Trivandrum, suggested that it would be better in the last phase of his life if he went under palliative care. We had no clue about what was palliative care back then.
In India, there are only three states, Kerala, Karnataka and Maharashtra, which have got the local state government policies which advocate palliative care. Palliative care is a State subject, which means that it's not within the central government power to decide any individual state’s health policy. Each state individually has to take a lot of interest in ensuring that palliative care is part of the public health policy. The palliative care system in Kerala has been simply successful, thanks to Dr. Rajagopal. Now in every district of Kerala you will find at least three palliative care centres.
My father was actually referred to Dr Rajagopal and he explained that palliative care has two parts. The first one focuses on alleviating pain through medication and the second is about making patients more comfortable with the reality.
The first thing which Dr Rajagopal did was to start my father on opioids to give him some relief from the severe pain that he was feeling. There is a Narcotics Act in India, which is very strict but thanks to Dr Rajagopal and his work with the Government of India, opioids can now be prescribed for medical purposes.
And the second thing was to transport him from home to the palliative centre, the Pallium India. My mother was there along with my father. I used to be with my father during the daytime.
It is important for me to say that palliative care nurses who took care of my father gave him a lot of happiness by making him recount his old stories.
Kasia - It is a beautiful gesture of compassionate care towards your father. Tell me more about it.
Vel - One of the things my father would often talk about, before he got ill, was his career. He was a very successful man during the early part of his working career. When the nurses, especially one of the senior nurses, were coming to visit him, they would just start chatting to him. Initially, he was very quiet, in general he was a quiet man, but when they started asking about his job, he couldn’t stop talking about it. He set up a factory and was one of its leading team members. This was the pride of his life. When someone would ask him about his career, he was just so happy to talk about it and he was forgetting about his pain to our big surprise.
Kasia - It shows me that the nurses didn’t see in him only a patient but mainly a person with life history, personality, profession and hobbies.
Vel - Exactly. The dialogues between my father and the nurses also reminded us about his interests, because somehow when he felt sick, we were more concerned about his health.
Kasia - When we spoke for the first time two weeks ago, you mentioned that when your father died, having a big support network was very helpful for you and your mother. It was different when your mother passed away. Not many people were around anymore to support you.
Vel - When my father passed away, we were experiencing death for the first time as a family. I am the eldest son, and I have a younger brother who was busy with work, but he was there all through. My mother was close to my father. There was a mixture of emotions, at first, we were very shocked and we did not know how to go forward in our lives.
My father’s two elder brothers who were the only ones who were alive gave us mental support. They said to my mother that although her husband had passed away, it did not mean she was alone, and that we could rely on them and were just one call away. They even offered to stay with my mum in our big ancestral house, but my mother decided to stay alone. But they would come practically every day from morning to evening just to sit with my mother and keep her active.
In 2019 my mother died, after being treated for haemolytic anaemia. Her death was tougher because there was no support system for me. Earlier at least I could talk to my mother, and she could talk to me. In the meantime, my uncles (my father’s brothers) had passed away, as had my mother’s sister. The older generation was gone. In fact, also because of it, my grief after my mother’s death is still present.
Kasia - Although you parents are not here physically, the continuing bond you have established with them is very strong. You cultivate their legacy by having offered your ancestral house to an organisation supporting children who are within the autistic spectrum, organising heritage walks and serving the community by helping people in need.
Vel - What I'm doing right now is basically what my parents in some way or the other did. They were both very simple people, although my father had a very high position throughout his professional career. But as a person, he was very grounded and sensible. My mother was a nature lover and she used to help out wherever she could. Our home at all times was open, anybody could walk in and talk to my parents. So, although I am nowhere like them, I thought that the best way to remember them is by serving people.
My school classmate had a plan of starting a home for abandoned people. He needed some help and I decided to support this initiative also to get some sort of peace for myself. It was before my mother passed away. But after her death, I got more involved and now our centre supports around 175 inmates. They are among the poorest people in the city abandoned by their families either in hospitals or on the roadside. With the help of the police and local municipalities we take them to our place. We give them medication, and a shared room to stay.
We also organise many activities there. For example, for my mother’s birthday or any special occasion for her we run events. It is my responsibility to conduct medical programmes. We offer free medical checkups and there are many doctors who are willing to help us. It is going well by God’s grace but of course there are times when we are short of funds but good people are always there to support us. There is never a shortage of good people.
Kasia - What about your ancestral house?
Vel - Our ancestral house is a huge place and it is located in the heart of the city. My brother and I are quite lucky because we are doing well in our careers so we decided to give it to people who needed it. Luckily we found a person who was working with autistic your people. He already had two schools in Trivandrum and wanted to open an art studio for them. So we gave the house to the organisation and it has been functioning very well since then. Of course, we have a small agreement with them as per the municipal corporation rules.
Kasia - What would your mother and father have said knowing that in their house there is an art centre for autistic young people?
Vel - They would have loved it. I am 500% confident. And also the people who are using this place, are maintaining the house very well. That is also equally important because it is a 135 year old house.
Both my mother's and my father's family are two of the oldest families and are among the first migrants who arrived in Trivandrum. Trivandrum was not a city earlier. The capital of the kingdom was elsewhere. And then people migrated from the kingdom when the king settled down in Trivandrum. Both my fathers and mother's families were the first ones who followed him. So, we are actually a very rooted family in Trivandrum. My brother and I look at ourselves as the custodians of this beautiful heritage building which was built and maintained by our ancestors.
Kasia - It's a very nice way to approach it. You serve the community by just offering the place which happened to be yours at this period of time.
Vel - Very true.
Kasia - During our first conversation you said that speaking about your mother and father had brought you joy. In India, do you speak a lot about your ancestors and people who have been important to you?
Vel - In Indian culture, or maybe in the Kerala culture, we look up at our elders for giving us directions in our life. In my family we used to talk a lot about different things - history, engineering, science and also our ancestors. We would also seek their support and guidance in many important matters such as getting married or starting a new school. Naturally, we started to be attached to them - our ancestors and forefathers and all that. That's the reason why every time I speak about my parents, I feel that they're still around in some form guiding what I do every day.
Kasia - And how have your culture, religion, if you have any, and your life experiences shaped the way you approach death, dying and losing your loved ones?
Vel - I don’t think religion has played a big role in my case, although in India, Hinduism which is a prevalent religion is very important. But there are some religious books, written by ancient saints who wrote extensively about life and death, which helped me to get some directions. Our holy book called Bhagavad Gita shows a very beautiful way of handling difficulties and it definitely shaped my approach to life and living.
I also spend a lot of time contemplating what life is all about. Because at the end of the day, after 20 or 30 years, we could be just a speck of dust somewhere. Love, respect, helping out people, also the adversities that I have experienced, started to play a very important role in my life. And basing my life on these values, I'm trying to become a better human being.
Kasia - Before we finish our conversation, I would like to ask what is the first image which comes to your mind when you think about your mother and father. Where do you imagine them? In which position?
Vel - When I think of my mother, I always see her sitting and waiting for me on the veranda.
Kasia - This is a beautiful first picture which comes to your mind.
Vel - Yes, this is the first image because every time I went to visit her, she was sitting there waiting for me. Actually, both my parents were there waiting for me but when my father passed away it was just my mother.
Kasia - When you visit the ancestral house do you see them sometimes sitting on the veranda?
Vel - Yes, very much. Although the house is being used as an art centre, in one of the rooms, I requested to exhibit all the photographs of all my ancestors. So, they are there as soon as I enter the house.
All the photos come from Vel's private collection.
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