It all started with the death of a friend. Even death can be a beautiful beginning, at times.
Painter Mehlli Gobhai, in his will, left one-fourth of his estate to children’s charities. And being the friend that he is, poet-author Jerry Pinto went looking for someone to fulfil Gobhai’s last wishes. One of the suggestions he got was Wadia Hospital in Mumbai, where there was a palliative care centre for children. Pinto found it difficult to wrap his head around the idea of a child facing death. Eventually, he girded up his loins and went to the hospital. And, what did the hospital want? Not new beds or equipment, but a book and toy librarian to read out to and play with the children. A month later, when Pinto visited the hospital, he found that the librarian had attained a ‘rock star’ status among the children, who would squeal in delight when he entered the wards.
But the wards also had another regular visitor—death. Pinto later got a call from the hospital, asking him if he would like to attend a workshop on washing dead babies. He thought they would be washing a doll, but a baby it was—a human who had lived for a few hours and deserved as much dignity in death as any of us. The room was filled with ayahs and ward boys who were all weeping. “Weeping because this was touching something very deep inside all of us,” Pinto tells THE WEEK.
Helpline number for palliative care assistance anywhere in India: [Saath-Saath Helpline 1800-202-7777]
It was a rite of passage for Pinto. On his way out of the workshop, he met a student he had taught at the social communications media department of Sophia’s college in Mumbai. She told him that she was working on a book on palliative care. A few months later, when he met her again and asked her about the book, she said that she had given it up for some reason. “And then I met Rumana Hamied (director, Veha Foundation, which helped publish Pinto’s A Good Life: The Power of Palliative Care) at a sort of party,” recalls Pinto. “And I said, ‘If you don’t have anyone doing the book on palliative care, I’ll do it.’ She said, ‘Let’s do it.’”
That’s how the work on the book started. He dived deep down the rabbit hole called the World Wide Web, scoured libraries and travelled and spoke to people across the country before sitting down to write the book.
It took Pinto two and a half years to come out with the book—“quite quickly, I think, given my normal gestation times and all,” he says.
The book, more than anything else, is a revelation—most of us associate palliative care with end-of-life care and terminal illness, but palliative care should essentially start at diagnosis. And, it is not just about easing physical pain; palliative care draws from various fields like ethics, economics and public policy. Even Pinto starts the book by saying, “I wish I had known about palliative care earlier.” In an hour-long conversation with THE WEEK, he talks about how palliative care could have helped his family deal with his mother’s bipolar disorder—an experience he fictionalised in Em and the Big Hoom, the toll caring for his mother took on his family, what her death did to him and what it means to grieve a loved one. Excerpts:
Q: The title of your book is ‘A Good Life’. What does a good death look like to you?
I think a good death would be a switch, like on and off. Like at this moment, I am talking to you and I am feeling fine, and someone throws a switch and I am gone. It would be over. That would be the best death, simply because I have seen so many people living through endless suffering.
A friend of my mother’s was 95 plus, and she just wasted away day by day, getting thinner and thinner. And every time I went to meet her, she would say, ‘Why am I here?’ And luckily, because she believed in God, I would say, ‘When you go upstairs, aunty, then you ask him that question. Okay? I can't answer that question.’ And she would laugh a little, as much as she could laugh, and we would talk about other things. But some of the things about life and death are mysteries. And if we had answers to those mysteries, they would not be life and death. I remember (architect) Charles Correa had a few hours left to live, and someone asked, ‘What are you feeling?’ And he said, ‘A great curiosity.’ And I think that is a lovely way to think about it.
Q: You write about how death can break a family. Death can also break a person. How did the deaths of your parents break you?
My father died before my mother. In Em and the Big Hoom, which everyone knows is my novel, which is autobiographical, Em—the female protagonist who suffers from mental illness—goes first, and then the father is left behind to deal with it. But in real life, it was the other way around. My father died of his first and last heart attack about a few weeks before I turned 21. And that Saturday in May completely rewrote my life.
I had huge grief issues, but responsibility as well, because my mother was not well. And I was the earning member of the family then. My sister was not earning yet. And I had no idea how much money it would take to run the family. I didn't know whether you bought five kilos of rice and one kilo of dal or one kilo of rice and five kilos of dal. I didn't know anything.
Death force-grows you. You have to just step up and take on that responsibility. And in having taken on that responsibility, did I do damage to myself? Possibly. I feel that there couldn't have been damage. Just because I am a functional human being today, I think I can't believe that [it didn’t do any damage].
So I did go through therapy, but many, many years later, after my mother died. And the 14 years that my mother lived after my father died were not easy on her and not easy on us as well. So when she died, it was a mixture of grief and relief.
Because at the age of 35, when she died, I felt like I could be a teenager now. I could stay out all night. I could go out of town if I wanted to. I could just be a new person entirely. That responsibility had been erased from my shoulders. And then slowly, with that grief and relief, the relief brings guilt. Because you are relieved that someone you love died, which cannot be a nice thing. So that also had to be dealt with. And that is when I went into therapy.
In some ways, I believe that was helpful. It wasn't grief counselling, because I had lots of issues at the time. But it was helpful to know, to look at oneself squarely and to be able to talk about oneself without fear of being judged.
So I think everybody should get therapy, and you don't have to be ill or suffering because it will bring you to a better understanding of who you are. But you need to choose your therapist carefully because there are lots of therapists out there who are actually aunties—like the aunty who wants to give you advice instead of leading you to your own truth. They want to tell you what to do and how to live your life. And those aren't helpful. But a good therapist who can be quiet and witness you finding yourself and just nudge you into a certain understanding, those are really useful—very rare, but very useful.
Q: You also talk about grieving in the book, and you have this beautiful line— 'grief has its own timetable, its own logic'. We have all gone through grief. But as a society, we do not realise that grief doesn't come with a deadline. Grief sits uncomfortably in a room full of people, like an uninvited guest or a guest who has overstayed his or her welcome. How did you grieve your parents then? Are you still grieving them?
When my father died, I was 21 years old and very into masculinity in a way that young men are. So it was very, very difficult to grieve for him publicly. And it was very difficult for me to come to terms with the fact that my rock had been taken away from me. I really felt exposed to the world.
I remember the time that Christmas—the municipality [worker] knocks on your door to ask for bhakshish [monetary gift], and I had no idea what you tipped, what was a good tip. It was just these kinds of small things that would keep bringing him back because he was absent.
I didn't feel ready. So grief was mixed up with anger also, because I felt that I should have had more time, I should have been prepared for this in some way. And I don't know how I could have been prepared for it. Because as long as the person who looks after you is alive, you are not going to actually look after yourself. You are not going to step up and say, ‘Oh no, I'd better learn all this because this person is going.’ You behave as though they are immortal. So that first episode of grieving was just like hitting a wall and at the same time climbing the wall, because you had to both get over it and get on with it simultaneously.
And there are very few spaces where men can grieve with other men. For instance, women come together and cry with you. They listen to you, talk about their grief. Men will just say, ‘Let's have a drink.’ That is the extent of their empathy or sympathy when you are grieving.
But the second one, I think I was a lot better prepared for, because I was 35 by then, and I would allow myself grief; I allowed myself time to think about her. I took some time off work, which I didn't do when my father died. He died in the middle of my second year of law exams, and I sat for the exams. He died on Saturday, and the next Monday, Tuesday, and Wednesday were the last three papers. I sat for all of them, and I did well.
There is a certain image of masculinity in your head—someone who manages everything. I don't know if the world was interested, but it was as if I was demonstrating to the world that I would not let this get me down. That's a huge psychic cost that you pay for, right? I mean, there are things that you will pay for. The body keeps count all the time.
So I was a lot better, at least in grieving my mother. But I know there is something called complicated grief, which is grief that doesn't go away easily. We all have a cycle. There is a moment of great and intense pain, but because the mind is kind to itself, you can't sustain that level of pain. And so it does fade over time. Eventually, it becomes a kind of dull ache, and then it comes back in little spurts and bursts at sudden odd things—when someone says, ‘Have you given away her clothes?’ And, you take out some clothes, and you start weeping over them. It is that kind of thing.
But eventually, you come to a place where you begin to be able to see that whole life is a gift. And the ending of that life is a natural ending to a life. But some people can't. And that is when the psychological team of palliative care has to step in and help with grief counselling. I am so glad there is grief counselling now. There have been attacks on doctors, because when a patient dies… grief is mixed with anger. And grief and anger together can be a very potent combination. But if there is good grief counselling, and the bad news has been broken gently to you, and you have been helped through it, attacks on medical professionals are much less likely. So grief counselling has a valid role to play in the medical profession. I hope more and more hospitals recognise this.
Q: You wrote about your mother in this book—“She’s gone now, and the nightmare has ended. Time has begun the sealing over of life's wounds, leaving only memories of her raucous laugh, her witty retorts, her self-mocking humour, and her sharp sense of the ridiculous.” Is that how you remember her now? Did the experience of caring for her alter your memory of her?
Recently, I began the process of sending my papers away because a writer’s papers can tend to overwhelm the house. And we live in a small Bombay flat, so I am sending all this stuff away to a library—The Study Centre for Indian Literature in English and Translation at the American College in Madurai. They have very kindly agreed to accept my papers, and I have been digging out diaries. And the diaries are like time bombs because they bring back so strongly all the hurt and anger and rage and missed opportunities and things I couldn't do because mummy was feeling this way or that way.
The things I felt and I wanted to say and which I have written and then sometimes scratched out because even then I knew that they couldn't be said or they couldn't be left around if I had said them. And so when I think about my mother in general, and your questions are bringing her back into my head, there is a warm, lovely feeling for all the good that she was, because I think that is also part of the process of grief.
Grief is like sandpaper. It just rubs, scrubs away all the bad stuff and leaves this sort of cleaned image of my mother for me. And I don't resent that. I know that it is natural in a way. It is how we heal and how everybody heals. So I don't expect to be any different.
But as a writer, when I was conjuring her up for Em and the Big Hoom, the first thing I discovered was that no human being will ever fit into a novel. You have to turn them into something else to fit them into a novel. So at some point, I might write about her, not in fiction, but it will be a different book. I don't know if I have the courage for that, at least not right now.
Q: You have also quoted Rosalind Carter, wife of the late US President Jimmy Carter: There are only four kinds of people in this world—those that have been caregivers, those that are caregivers, those who will be caregivers and those who will need caregivers. That is so true, especially since we are an ageing planet. They say it takes a village to raise a baby, but it also takes a village to take care of the elderly and people who are sick. We don't realise the toll it takes on the caregiver. How do we support caregivers in a society that is turning more individualistic? How do we come together as a community?
It is very old-fashioned, actually. And I am going to sound like a grandmother, but I will still risk it. Our response to hearing that someone is ill is either to offer lip-service sympathy or to say the standard thing, ‘You must let me know if there is anything I can do.’ Now, the second one is so dangerous if the person takes you seriously. Suppose in that moment, the person says, ‘Yes, write a check for Rs 5 lakh.’ You say, ‘I don't have Rs 5 lakh.’ ‘Okay, write a check for Rs 1 lakh.’ ‘I don't know if I have Rs 1 lakh.’ ‘Write a check for 50,000.’
You are going to be pinned to the wall, and eventually you will have to say, ‘I didn't mean I am going to give you money.’ Then the person should ask you, ‘What did you mean then if you said that you were willing to help? Will you come and take my mother to the hospital on a day that I have a very important business appointment and I cannot? Will you do that sometimes for me? Will you come and clean the house for me? Will you cook a meal and bring it across, and maybe do it every week, so that that day I do not have to think about the meal, and make sure that it is diabetic khana (food) because my mother cannot eat sugar? Will you do that?’
Now, those are ways in which we can be palliative carers for each other. Simple ways of saying, ‘Okay, you have a child who has severe learning disabilities. I will come in and dance with her. I will teach her a little dance.’ ‘Your mom is not well and needs someone to be there all the time. Why don't you go out and catch a film with your husband? I will sit with her for two hours.’ Tell them what you can do. Offer them that support. And if you can do it regularly, gosh, you are a saint. You will earn so much punya or so much heavenly merit. It is really just so simple as being kind. How would you like to be treated in the same situation? And because it is so simple, it seems to slip everybody’s mind…. No one person is carrying the world on their head like Atlas; we are all carrying it together—it becomes easy.
Q: American author Jason Reynolds was asked if there was something in this moment in his life that felt like a prayer. And he said that caring for his 80-year-old mother—she was not feeling well for a year or so and he was washing her, cleaning her—was burdensome at times, but it also felt like a prayer. ‘I am praying at the only creator that I have actually ever known,’ he said. I found it so apt because it puts the difficult aspect of caregiving and the loving aspect of it so beautifully together. How did your experience of caregiving feel? Did it feel like a prayer?
I have to say that this American author is much more spiritually advanced than I am.
My sister and I started looking after my mother in some sense when we were maybe 12 and 9. That is when I remember my sister going into the kitchen for the first time and helping my father with cooking, and me taking over cleaning the house, like washing the floors and sweeping, because my mother would not allow a servant into the house because she had xenophobic tendencies as well, like a deep suspicion of strangers.
And so everything in that sense—cooking, making sure that she had food, making sure that the food was something that she liked, buying her bidis, cleaning up after her, giving her bath—became our life between the ages of 10 and 35.
For 25 years, I did that and my sister did that. You cannot think of it as a prayer. If you can, you are doing it as a choice when you start at like age 38 and your mother is 80 and you do it for a couple of years. It is lovely. And I am not dissing this man—I found it very moving and very touching that he should say that and that he should have cared for her this way. But over the long term, it becomes a duty.
There are moments of transcendence because there are always moments of transcendence. Like, when my sister would give my mother a bath, my mother would take her hair and make it into little things and say, ‘I am a mountain range, I am a volcano.’ You know, all kinds of silly things. As if my mother were entertaining my sister. My sister was a child, and my mother was entertaining a child. We would laugh about it madly. Now, even telling it, I feel like, ‘Oh, it doesn’t sound that funny.’ But it was to us.
So it was a grind all the time. She was very funny, witty, lively, and energetic. I think she gave me my passion for language. All that was there, but when it stretches for a very long time, the arc is so large that you cannot see it. And you cannot describe it in a quick, easy term, except by saying this is what life is like. It is great, and it is awful at the same time.
I wish I could say something elegant like that prayer thing…. I think I was in the last year of college, and someone threw a farewell party on the terrace of her building, and she said, ‘You must come.’ I said, ‘Yeah, sure.’ And she said to come by 8.30-9 pm. And I arrived at 8.30 pm, and there was no one there. It is Bombay—you say 8.30 pm, people turn up at 10.30 pm. So I had a deadline of going home by 10 pm. I was there at 8.30 pm, I thought I would get one hour of the party and then slip away, and half an hour to get home.
At 9.30 pm, I was going down, and her mother was coming up with the first of the food and said, ‘Where are you going?’ So I said, ‘I am really sorry, but I have to go home. I have a deadline of 10 o'clock. My mother's not well.’ So she took me to the kitchen and gave me my dinner there. I bolted the dinner because I was already late and ran off home. And everyone the next day told me what a great party it was. And I felt so stupid. I felt like Cinderella. I had left before even the dancing started. And at that point, I was very, very resentful.
And when I went home, and it must have shown on my face, my mother said, ‘What happened?’ And I said, ‘I had to come home because of you.’ And she said, ‘You should have told me. I would have told you to stay out all night.’ Of course, she would have said to stay out all night, but there would have been repercussions. There would have been anger. Whether she could track it back to my having stayed out all night and her anxieties, I don't know, but we knew there were those things, so I would come home in time. And those are the small things that you still remember.
I am telling you this after 30-40 years of this happening. I still remember walking down as people were coming up for the party and all saying, ‘Why, where are you going? Are you mad? Now?’ But that was life. That is what life is like. So, it’s a prayer and a curse, a curse uttered under your breath.
Q: You begin the book by wishing that if only you had known about palliative care earlier. And I know that you said it in terms of caregiving for your mother. How would palliative care have helped you?
I think to begin with, my father and mother would have benefited from someone sitting down and explaining to them that this was not going away, that this was to be for the rest of their lives. I think it would have helped them then work out the arc of their lives a little better than making plans that they couldn’t fulfil.
I think it would have been easier for my mother to have quit her job immediately rather than to have struggled on at the American consulate and then have it all go very bad towards the end.
It would have been easier on us as children if we could have met other children who had parents in a similar situation, and to understand that we were not alone. And both of us handled the situation differently. My sister spoke to no one—no one in her school or in her college ever suspected. And she always turned out well. She did all her work well. She just managed everything. I was a walking nightmare. I was like a calamity.
Everyone, very soon, guessed that I didn’t have a functioning family. By the time I was in college, I just decided I was not wasting my time hiding this; I would just tell everybody so that I don’t have to say, ‘Oh, you can’t come over now. You can’t come over tomorrow.’ Or, tell lies. Just say, ‘You are never going to be able to come over. My mother’s not well. She doesn’t like it. So please, we can meet outside, but we cannot meet at my house.’ Let’s just be straightforward about it. It is less psychic energy wasted. So we handled it differently, but we had to learn to handle it by ourselves. There was no support. There were no help groups. There was nothing. There was no counselling…. We were alone, and it felt very much like we were alone.
And if there is one thing that palliative care does, it is that it brings you into a network of support. And that is something that we lacked and which we could have benefited from. We came through eventually because we were committed to trying and doing whatever we could. And we loved our mother. Despite whatever else, she was my mom. So we did it. But it could have been easier, man.
And I am so glad that there are people who can just sit down and exchange comments and have a conversation about what it is like and how difficult it is sometimes to care for someone like that and to love them. Because what makes it difficult is the vulnerability that you feel, right? For instance, if I see someone whom I don't care about lying on a bed, I will feel, ‘Oh, I am so sorry that he is ill.’ But I am not going to be really sad about it.
With someone you love who is ill, you are confronting that illness, and you are confronting the grief as well that they are ill. And there is nothing you can do about it. You feel so helpless. That helplessness is the problem, really. And to understand that many other people are helpless in the face of this mystery of ill health, and especially of mental ill health, can be very healing, I think. To know that you are not alone and that you are not missing some essential part or element that would help you to understand this.
Q: 'Em and the Big Hoom' was supposed to be a memoir, but you turned it into a novel because writing a memoir had become too traumatic for you. How was the experience of writing ‘A Good Life’?
This was a lot easier and a lot more difficult. A lot easier because it was not my story. It was other people’s stories. A lot more difficult because there were so many stories.
On a really simple level—as a writer, you will know this—you can overwhelm with detail because you want the person to stand out in fullness. But you also have privacy issues, so you have to paint generic but recognisable pictures. That is the issue. And many people would say that they would be completely happy with me telling everything about them. But I would often think, ‘Yes, that’s consent, but is it informed consent? Do they know exactly what it means to have every detail put down on the page, including some details where they come across sounding either stupid or self-centred, and they don't know it, but they could be judged for that.’ So you have to make that balancing act for yourself.
I thought it would be depressing—I thought that when I finally sat down to write it, because it is dealing with these large subjects that [one is] not aware of. But it did help in a certain way. One of the things that I have always feared is death and seeing the almost matter-of-fact way eight-year-olds deal with it: ‘When I am not here, I want my teddy bear to go to so-and-so.’ It is almost as if they are making wills. ‘I won't be here next Christmas, so give it to me now.’ It is just so matter-of-fact. And you are thinking, ‘My God, where does this come from?’ Maybe it comes from not having thought too much about death. Whereas if you get to 59, you have thought about it a lot. We have had more time to think about it. But sometimes their bravery can be just astounding.
So I think every book brings its own difficulty, but it brings its own great rewards. And this one was very rewarding, too.
Q: And what was your key takeaway from this?
My key takeaway was that people are just astonishing... like if you give someone the ability, the moment and the opportunity to be kind, they will take it. And that is so lovely and heartwarming to see…. While the newspapers bring us, quite correctly, tales of the great grim wars and the violence that we have sort of visited on each other, there is also a great and infinite capacity for tenderness. And in some ways, if we could access that tenderness more and allow people more opportunities to be gentle with each other, the more we would be able to get out of the hole that we have dug ourselves into.
Q: The book leaves you with a sense of hope and the knowledge that there is help, that you are not alone. But people don't know where to find that help. How do they find a palliative care service? And do you think people in India can afford palliative care?
A lot of the palliative care that is available is absolutely free. So, affording it is not the problem. Being aware of it is the problem. Doctors will not send you to palliative care centres, because no one is giving them a cutback. If they send you to a nursing home, where you are charged Rs 1 lakh a day for the ICU and for the ventilator, they get a kickback on that.
And there is a moment when the doctor knows that nothing else can be done—that is not when palliative care should start.
Palliative care should start years before, so that you get used to those doctors and nurses. And they can help with caregiver burnout. They can help with making sure that you make fewer hospital visits, helping you with intubation, cleaning up, and teaching you some skills so you can do things at home. Often, taking the sick person to the hospital means that one earning member has to take a day off and not earn and take that person to the hospital. But if they could learn to do these things at home… they would save that money, right? But if we do not have that kind of caring built into our medical system, we will not have doctors telling [patients about it].
At the end of my book, there is a helpline [Saath-Saath Helpline 1800-202-7777]. You dial that number from anywhere in India, and they will tell you what palliative care is available in your area. It is not as if every patch of the country has been covered, but a lot of it has been covered, and there are more people coming up every day doing it, because it can be done. And it needs to be done.
Book Name: A Good Life: The Power of Palliative Care
Author: By Jerry Pinto
Publisher:Juggernaut Books
Pages: 257
Price: Rs 699
