Accompanying Children to Their Death

July-August 1999

By Alan Joyce

Englishman Alan Joyce runs Fundación Dharma in Bogotá, Colombia, where children with cancer come to die.

The foundation takes care of children who are being treated in the National Cancer Institute. They are children from extremely poor families from towns outside of Bogotá. We take care of them during their treatment, which is a minimum of one year and can be up to five years with leukemia. Some children are here for eight years before they die.

The vision here is extremely simple, it’s very clear. We try to alleviate a little of their suffering of and prepare them for death. These children are suffering with cancer; they have chemotherapy, radiotherapy, amputations, surgeries, and apart from this they’re a long way from their families – and that’s a lot to take for a child. If they’re not going to die in a few weeks or six months, six years, or sixty years, they’re going to die anyway. We try to take advantage of this difficult time and prepare ourselves for something that’s inevitable.

They range in age from 5 years old to 18. There are 14 children and it’s always full. On weekends we have visits from other children who are being treated for cancer as well in Bogotá, but they come here for a kind of vacation.

The National Cancer Institute is for people who basically can’t pay for treatment. Most of these people have never left their towns, and you can imagine them arriving in the city, some of them without shoes, and you cannot imagine how they’ve been treated by the local witchdoctors. Plus, Bogotá is a very dangerous city and many of them get mugged – a whole lot of suffering.

They first receive treatment in the institute and then the social workers send them to the foundation. As I’m at the institute nearly every day, I know the problems of the families and I can select them as well. Generally the hospitals don’t like children dying in hospitals, so they immediately send the kids back to the hospital to die. That’s the last place the kids want to die, so they bring them here. I usually get the more doubtful cases.

It works here – something happens. Some children they thought would not recover do recover when they get here. The doctors in the institute sometimes say, “Why don’t you receive such and such a child this weekend, he’s really depressed.” It’s more realistic here, like yes, cancer is something serious, but it’s just a small part of your life and you have to carry on living the rest of your life. I think the trouble in many other places is that immediately the children arrive, they are a cancer patient and there’s nothing else. They sit there and wait and see how the treatment goes. Here they don’t really have time for that!

The preparation we do here for death is basically the ease with which we talk about it. With us as adults the children want to talk about it. Their parents don’t want to talk about it and even the doctors in the institute don’t want to talk about it. What message are we giving these children? Death must be terrible because nobody wants to talk about it! That’s what we do; we talk. It’s very easy.

The children take care of each other, and in the case when one is dying they accompany them up to the moment of death, and in many cases for quite a while after. I arrived once quite soon after one boy died, a boy who hadn’t been with us very long. He was very anguished and nervous and had just two months to live. He was quite an adult at 20. When I arrived he had died about 15 minutes before, and another girl who stays here was at his side massaging the top of his head saying, “It wasn’t that bad, was it? And such a fuss you made!” She stayed with him from about midnight until 3 in the morning.

The ease with which we talk about death takes away the mystery. The comparison I give them is like when you’re about to change schools, or when you’re new in town and don’t know anyone. That’s like the moment before death. I can remember the night before going to a new school when you’re nervous and can’t sleep – that’s like the moment of death. I tell them if you know what the school is like and you even have some new friends at that school, it takes a lot of the worry away. The best thing is if someone accompanies you at the moment of death.

There are examples I have to use for children. We were talking about projections the other day and I was explaining to them how happiness comes from within. So I say, “You see the hamburger, and you see happiness in the hamburger?” The child says, “Yes, I do.” It’s fresh and it’s hot, and they see total happiness in the hamburger. They agree with this, and I say, “When I look at the hamburger, I see a dead cow, so where is the happiness coming from?” It’s not coming from the hamburger, it’s coming from us!

I was talking with Lama Zopa Rinpoche when he was here in November last year about an example of emptiness, and I feel fortunate that some of the children who have had limbs amputated can benefit from this. I’ve told them there’s something really positive about amputations and they can learn a lot from it. It took so much thinking and a lot of meditation for me to understand even intellectually the idea of emptiness, looking for the I. I was explaining to Alex, a boy whose leg was amputated, and I asked him, “When they amputated your leg did you carry on being Alex?” “Yes,” he said. “So Alex wasn’t in your leg?” “No,” he said. I asked, “If they took off the other leg, do you think you would continue being Alex?” He said, “Of course.” So I continued this by asking about the kidney they removed and half of his lung, and whether he would still be Alex. I said, “Let’s just say they take away everything, so what is Alex is what isn’t the body – they proved that, how nice of them! They proved that what is Alex continues on beyond the body.” They like that! It’s something really positive. For a boy of 17 years old to have a leg removed is something quite serious.

These children are Christian, Catholic, Evangelists, and they ask me about the Buddhist teachings. It’s good because I have to find a way to apply the Buddhadharma to the Christian teachings so as not to confuse them. The idea is to reinforce their beliefs totally. If they’re Jewish, how can I help them to be a better Jew? If they’re Christian, how can I help them be a better Christian?

The other day the children were asking me about rebirth. I said to one of the young girls, “You’re Catholic, and you die and go to heaven. Saint Peter is there and he asks what your name is. You say ‘Sandra Gonzales,’ and after looking on his list he tells you there’s no way you can go to heaven, that you have to go to purgatory to purify the sins. When you’ve purified the sins you get your free pass to go up to heaven.”

Then I give them the Buddhist perspective: you have negative karma. You have to be reborn to purify that negative karma. You die and you’re reborn until you’ve purified all that negative karma. When you don’t have any negative karma left you reach the state of Buddha. It’s just the same, no?

The children ask as well if in Buddhism does hell exist? I ask them if to receive chemotherapy every day, to amputate one of your legs, to be sick twenty-four hours a day without a break, isn’t that hell? Yes it is – we do have hell. That’s how I apply it. I feel like I’m the fortunate one because I really have to think about it!

It’s the same with treatment. I have my own opinions on chemotherapy, on amputations and everything, but the only thing I do is damage if I start showing my opinions. Consider all the mothers – they’ve all selected chemotherapy and radiotherapy. Can you imagine if I arrived at the institute and said, “Listen, there are alternatives. There’s such and such a natural treatment.” And the mother would say, “Oh yes, chemotherapy is terrible, I’m going to try alternative treatment.” Then let’s say the child dies. The guilt the mother feels – “Why did I leave chemotherapy?” – is absolutely unbearable.

Or let’s say she continues with the chemotherapy and doesn’t listen to the recommendation of alterative treatment, and the child dies. Then she would say, “Why didn’t I listen to Alan?”

Basically, whether they’re in chemotherapy, radiotherapy, alternative treatment, taking shark cartilage or with the chief of the Indian tribe of the Amazons who has an office here in Bogotá, I’ll accompany them – that’s what I do.

In general I think we don’t want to face the fact that we are going to die so we build a wall. We block this out in any way we can. When people come here they have to face it. There’s no way to pretend. People see their own children’s death in the eyes of these children here. They see the truth of the situation and that’s what makes them break down and get so sensitive. They have to look at themselves and their own situations. I find that very fortunate, others find it overwhelming.

It makes me see the reality of things, understand the impermanence. Impermanence you see here every day, and I think that’s the most important. If things are impermanent why grasp at them? I’ve got an example I use here. We’ve got a very, very contaminated river, the Bogotá River – you die if you get into it! I tell the children, “We know, we understand that grasping makes us suffer. We get attachment to families, to our people. We call it love but it’s really attachment. Having that is like going to swim in the Bogotá River and coming back with blisters and things coming out, but still we keep going back there. What are we thinking?” If we know that grasping and attachment make us suffer why do we continue grasping and continue suffering, suffering, suffering? Of course you mustn’t be that hard on yourself because there’s plenty of practice to do. I’m definitely attached to many things. So this is another way I use the Dharma.

Humor is another important element. When we were at the coast recently in Santa Marta one of the boys with us was Marvin who is 10 years old and has had a leg amputated. His humor is incredible. He was hopping around the pool doing beautiful dives when a little girl came up to him and said, “What happened to you? Why do you only have one leg?” Marvin told her, “I have this really bad habit of eating my toenails and one day I was really hungry and I ate the whole leg!” That’s beautiful they can find humor in this kind of situation. The little girl with her eyes wide open asked, “Is it true?”

We shouldn’t take ourselves so seriously; that’s it. That’s exactly it. I was talking with another boy who recently had a leg amputated and he said he gets complex-ridden when he gets on the bus and so many people stare at him. I told him people do stare and don’t doubt it – they’re curious and they want to know what happened. Was it an accident? Did they amputate it? We’re a curious species. It’s not really that interesting. Probably many of them say something like, “Thank God that didn’t happen to me.” It’s really not that interesting. I told him, “Alex, look – to have one leg is not that interesting. If you had three legs that would be worth looking at! That would be interesting!”

They are very light-hearted. They don’t take themselves so seriously. It’s important that you tread delicately to look for humor, no? The last thing you want to do is offend and hurt the person. It has to be done very gently and with a lot of love as well. You have to be able to make fun of your own things as well, because if we take ourselves too seriously how can we try to have humor with others? It’s not very nice. I mean I’ve got things you can really laugh about!

Often the children are more worried about what’s going to happen with their mothers than about their own death. Usually the families disintegrate – the father disappears. Most of the time the father can’t take it and they separate. He has his own way of thinking and accepting the situation. Usually the father takes charge of everything and solves the problems. There is still a lot of the macho image for men here in Colombia, so when they find something that they can’t solve like cancer, they’re totally impotent and turn to alcohol and other women, and the mother is left to face the problems.

I’m definitely spending a lot more time with the parents. We really try to work with them because this is the best help we can give to the children. How would the parents respond to everything is so important to the children’s recovery. If these children see their parents accepting the sickness, then they are calm. They know their parents have no money, they know their parents have another six, seven, eight children, they know the father is not dependable.

And when the parents see the children are well taken care of by people who genuinely love them, who show them unconditional love, the mother is totally at ease with the situation. She can be at home thousands of kilometers away and she can be quite tranquil. The child sees the mother is not anguished, is not panicking, is taking things as they come, so the child is a lot calmer. Every time the child sees the mother crying and panicking they think, “That’s it, it’s over, I must be dying. Look how mother is behaving.” But when they see the mother so calm they take the treatment more easily. It is a lot easier. The cells recover a lot more quickly. As I mentioned some of the doctors will send me kids for a weekend because they see the kids’ defenses get stronger. Just in activities, jokes and talk the defenses get stronger and it works, it really works.

Sometimes I go to the gompa for meditation and one parent, another, and another will arrive and ask to sit with me. They’ll ask if we can talk or if I can read some of the Buddhist teachings to them and explain it to them. One of the patients who is a lot older and who is now my secretary was amputated and had a terrible tumor. She’s okay at the moment and is interested in becoming a nun! She has read so many times the Tibetan Book of Living and Dying and understands it so clearly that she will explain it to me sometimes! It’s beautiful and the parents have deep interest in the Buddhist teachings.

The Buddhist teachings are a lot more applicable to everyday life. As one child told me, “The Bible says you have to be good, the Bible says you have to love, the same as the Buddhist teachings. The difference is the Buddhist teachings tell you how and the Bible doesn’t!” That’s true. They tell you how. They teach us to be patient. They teach us how to be generous without making mistakes; they teach us how to meditate.

So, yes, the children do understand very deeply that cancer is a small part of their lives and they understand how easy it is to die. Last night I was reading Lama Zopa’s book The Door to Satisfaction, and that’s it exactly. We’re all dying and with each second that goes by we’re closer to dying. They understand that we’re in the same situation. Just the other day one young boy who has been in chemotherapy for seven years – can you imagine that, seven years! – said, “The only thing that chemotherapy does is maintain the life a little longer.” I replied it’s the same with eating. We eat so we can prolong our life a little more. We look both ways before crossing the street so we can live a little longer. If he doesn’t eat he dies. If he doesn’t do chemotherapy he dies. And we’re all in the same situation.

Why do I love working with children? I have a natural connection with them. I can talk with them on their own level. It’s always been that way with my own children as well. When we lived on an apartment block I was always taking care of the single-parent children when the mothers had to go out.

And the honesty – I’m talking from a selfish perspective here. I really adore the honesty. When they don’t like something they tell me directly. They don’t have these complexes that adults have where they have to try to make an impression. They just say it straight out. This happened with Silvia at the ocean recently when I was making a joke by saying if she was going to swim in the ocean please don’t pee because she was going to drug all the fish with the morphine and there would be some very glassy-eyed fish swimming around. She didn’t like that too much and she told me directly. I really appreciate that. It wasn’t a good idea to say that!

There have been so many memorable moments.

Orlanda died with me when she was 17. She really believed in incarnation. Before she met me her family dedicated time for meditation. (For me the meditation is absolutely essential. Without that I wouldn’t have a clear vision of things. It is my hobby, my passion, and what I try to dedicate my spare time to.) The family was very poor and lived here in Bogotá in a part of town that is dangerous. She had a deep belief in rebirth.

Before Orlanda came we did a retreat with Ven. Thubten Kunsel and she used me as an example that maybe in another life I was her dog. One day Orlanda just said to me, “Alan I’m just sure we knew each other in a previous life. I think you were my puppy dog because I really just love you.” That really moved me, so I think maybe I was a dog!

In any case I stayed with that girl the last six months of her life and she was so calm. She dedicated all her time so that her parents would not suffer with her sickness. The day she died I was there with her mother around 1:00 in the morning. She was on the ground floor because she could no longer go upstairs.

She asked her mother, “What are we doing on the second floor?” Her mother told her, “No, we’re on the ground floor, my love.” Silvia said, “And that woman – who’s that woman?” Her mother said, “No, it’s just Alan and me.” She grabbed my arm and said, “We will be seeing each other again, won’t we?” I told her, “Of course,” and then she died – she just breathed out.

Lina, a girl of 13, was staying here in Bogotá with an aunt and uncle and was from a nearby town. When she knew she was dying, she wanted to go to her hometown. Her mother told her no because it was dirty and full of cows and chickens. I told her that isn’t what matters because she’s going to die, so I received her permission to take her myself. We went over the weekend and I think I passed one of the most beautiful weekends in my life. She was in a wheelchair, the weather was beautiful and sunny; it was a typical Colombian town with the main church in the center.

She took me around town and showed me everything. We went to the very, very small store that sells french fries and things like that, and she said to the owner, “I don’t think I’m going to be seeing you anymore so I just came to say goodbye.” The owner gave her potato chips and Coca Cola. And then she went and said goodbye to all her friends from the town and the nuns from the school. We finally went to an airbase where the Air Force is, and she had a boyfriend there that she had to say goodbye to. I told the general, “Even if he’s flying the only airplane in Colombia, he has to come down!” To see these two children saying goodbye to each other was very moving. She forgave her boyfriend for not keeping in touch – he just couldn’t, it was too painful.

We arrived back in Bogotá around 2 o’clock in the afternoon and around 2 in the morning she died.

Claudia was 15 years old and had received chemotherapy for four years. She understood at one point that she was very close to death and wanted to be with her family in Villavicencio when she died. She never knew her mother, though, as she died when Claudia was just one year old.

I arranged for an ambulance to take her father, her and me for the four-hour journey. She gave us such a clear example of her generosity on the trip home: even with oxygen and in great physical pain and anguish she would occasionally remove the oxygen mask to make comments like, “Daddy, when we get home, don’t given Alan meat or chicken or fish – he’s a vegetarian!” Half an hour later and after obvious deep thought she would once again remove the oxygen mask to say, “Not even stock cubes!”

After arriving at her home I took care of the practical necessities and stayed with her. Around 1:30 in the morning I told her I had to go to sleep. She removed the mask once again and, eyes sparkling with genuine excitement exclaimed, “What an adventure, Alan! No?” It was more like she was about to travel to the World Cup in France than finish this life!

The next morning, showing obvious signs that the moment of death was near, I made her as comfortable as possible and we talked. Later, two of her eight sisters arrived, both of them crying and extremely distraught. Claudia removed the oxygen mask and said, “Don’t be silly! I’m going to be with our mother!” And then she stopped breathing.

Adriana was 17 and had gone through three years of chemotherapy, surgery and the amputation of her left leg. The typical phases of denial, anger, sadness, depression and acceptance one sees in children when they are told of being close to death can last days, weeks and even months.

Adriana, however, went through all the phases and some I didn’t even know of in about thirty minutes! Phase one: Teach Alan some new, extremely wholesome words in Spanish (I wouldn’t dream of trying to translate them!). Phase two: Sadness and anger. “So I won’t be able to attend my high school graduation next Friday!” – her hometown of San Martin is about eight hours from Bogotá. I replied, “Of course you shall! Do we all stay in our homes because maybe I’ll get hit by a car? Or a brick may fall on my head? We have to live each day to its fullest!”

During the remaining five or six days before her graduation there was gradual acceptance, clarity and a great deal of humor. Once when we went to rent a movie I told her to pick only one as I was a little short on money. She replied, “No! At least two! They could be my last!”

The following Friday was the big graduation day. However, there was something Adriana wanted to resolve before dying. More than three years before, when her father, who’s an extremely active member of a paramilitary group, was informed Adriana had cancer he just disappeared from the scene. Adriana wanted to talk with him just one more time.

Okay! What do we have here: One rather small Buddhist Brit trying to locate one large, extremely dangerous member of one of Colombia’s most violent (not to mention illegal) paramilitary groups.

After many phone calls to the local police, the town mayor, houses of ill-repute, etc., finally Adriana’s father returned my calls. I consider myself more or less a decent practitioner and a true believer in love and heartfelt compassion, but when I explained the situation to her father I basically said that the whole power of the British Empire and a great deal of the US and Australian army (recalling my cherished friendship with Ven. Thubten Kunsel) was going to fall on San Martin unless he attended his daughter’s graduation!

When Adriana came back after the graduation weekend she was tired but extremely happy. To say her smile was from ear to ear is not an exaggeration – she was so thin at this point that it really was. The first thing she did was show me the photographs of her graduation: “This is me, my mother and my father! This is me receiving my diploma with my mother and father!” She went through many – many! – photographs in this way.

A few days before her death, Adriana wanted to know how many children had died with me – I think she wanted some references! When I told her in the last eight or ten years that I really don’t know, she started naming ones she knew, and we reached sixty-something children who had died with me personally. I said that’s enough, we don’t need to count anymore.

The following Friday around 3 p.m. Adriana asked another girl to give her a manicure in her bed. “A bright red polish would be nice,” she insisted. (Knowing Adriana, she got the manicure because you never know who you could meet or what events could take place in the bardo – better be presentable!) “And put on that music Alan always plays” (a Chopin concerto she really liked). She finished her nails, smiled at them, laid back to listen to Chopin and died.

Silvia, a girl who is close to dying now, wanted to see the ocean for the first time, and I made preparations for a few of us to go. I made quite a big deal out of the trip and got her very excited, but it got to the point where was obviously too sick to fly in a commercial airplane. I had to tell her that she couldn’t go, but that also gave an excuse for all the anger she had inside to come out. She had been so calm and quiet about her whole situation until then.

“You lied to me! I know I’m dying. My mother doesn’t give a damn and my father hasn’t even phoned me!” It was positive that this happened, though. The next day we surprised her by finding somebody who would take her in a private aircraft. She arrived like a member of the Colombian cartel!

Why is it beneficial to have a dying girl see something like the ocean? It’s her last wishes. Definitely I’ve seen children hang on, hang on, hang on, grasping life and going through enormous suffering because of things they haven’t finished that they wanted to do. Their dreams have been, “I wanted to study. I wanted to get my graduation. I wanted to get married. I wanted to have sex. I wanted to do so many things.”

It makes it so much harder at the moment of death. At least if they complete some of these wishes, such as to go up in an airplane, to see the sea, to say goodbye to your friends, to your family, to people you haven’t seen. It so puts you in your place in terms of how small we really are and how small my problems really are. When the moment of death comes normally it’s usually, “I never got to do this or that, I really wanted to do such and such a thing.” They’re really frustrated. If we can get them at that time to say, “At least I went up in an airplane, at least I saw the sea, at least I got a letter from Enrique Iglesias (which I arranged for one of them),” it’s so much easier for them to let go.

Marcos spent eight years with me: He started treatment when he was 11 and died a few months ago when he was 19. He was at the hospital and various children from here and the person who takes care of the children were visiting him. His father was there as well.

The father was very nervous, much more than the mothers (that’s another thing I’ve discovered in general). I told the father to hold Marcos’s hand and not to worry, he’d be fine. I sat down on the other side and took his hand. Marcos said to Flor, one of the girls, “Raise the head of my bed. I want to speak with Alan.” She raised it and he told me to come closer.

I put my head really close and he said, “Oh Alan, I want to go now.” I said, “Marcos, you really can. You’ve been through so much. There’s no need to hang on. You really can go now. There’s no more pain.” He sat back and he didn’t take two breaths. He breathed out and stopped breathing. It was so peaceful. The only one who noticed was Flor. She heard what he said and she squeezed my shoulder.

I continued with the powa (transference of consciousness) practice and the father didn’t even notice. There was a nurse and about five children from the foundation who didn’t notice. They assumed he was asleep. We continued for about 10 or 15 minutes with the practice. I got up, went around and held the father by the shoulders. I told him, “Now Marcos is not going to have any more pain. They’re not going to inject him anymore and he’s peaceful.”

Lama Zopa Rinpoche came to visit us in November. The children understand because I do talk with them a lot about Buddhism and the teachings, which are for living and for dying and are practical. They love me to read to them the teachings on patience. Being injected 10 times a day, the teachings on patience from Geshe Lobsang Tsultrim in Spain are wonderful for them.

They can go for a year and a half with chemotherapy and when finally it’s finished they can grow their hair back. They go back home and grow their hair back and spend time with their family, and three months later they come back for their checkup and no, you have metastasis again, you have to start chemotherapy again. The patience is very important.

When Lama Zopa visited the emotion was very high. I had great help from a Christian center called Shagrel Corazon (Sacred Heart). This group has something like 47 hospices here in Bogotá – for prostitutes, for street children, terminal, old people, everything. The volunteers are quite affluent and are able to help – that’s how I got all this help, which is another story. These people are devout Catholics and they are very interested in the Buddhist teachings, which we’ve talked about a lot. When they found out Lama Zopa was coming nothing would have kept them away! They came, they spoke, they asked questions.

I have a Catholic priest who comes to Centro Yamantaka, which is very nice. When he comes to the gompa he goes in front of the Catholic altar where he makes a cross in front of Jesus, and then he goes in front of the Buddhist altar and makes the cross there as well as in front of the Buddha. He also does math here for the children and helps them with the things I can’t. Thich Nhat Hanh said in one of his books, “When I see a good, practicing Buddhist I see a good, practicing Christian.”

When Lama Zopa was here the emotion for me was great, as you can imagine, and the honor was great. He went into our gompa that has the energy of the children and all of the people who go there for only good reasons, like to remember a child who died, pray for a friend who is sick, or for their families or a friend who is about to die. So when he went into our gompa, I was alone with him. He was blessing the Buddhist altar. From one moment to the next he was reciting mantras and then all of a sudden he started laughing. He turned around and said to me, “Alan, the buddhas are really pleased with you!” It’s like he was on a direct phone call! That’s something I’ll never forget. I don’t need to hear anything else – that’s enough for me!

Let Me Know – Now!

By Orlanda Gisela

If you would love me, love me now while I can enjoy

All the sweet and kind sentiments

That flow from true affection.

Love me now, while I am living.

Do not wait until I have gone,

Engraving on marble, passionate

words of love … in cold stone.

If you have loving and sweet thoughts towards me

Why not whisper them now?

Do you not see how happy and content

you would make me?

If you wait until I am sleeping,

Never more to awake,

There will be walls of earth between us

And then I couldn’t hear you!

I’ll not need your caresses when the

grass grows over my face.

I’ll not need your affection and kisses

At my last place of rest.

So, if you feel love towards me

Even if it’s just a little!

Let me know now, while I’m alive,

That I may hold and treasure it.

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