A Legacy of Compassion

This is the story of Sunshine Mugrabi, as told by Kelly Larsen.

I got interested in end-of-life care only about a year or so ago. I found out about a conference, held in September 2010 on Hospice and Palliative Care in the Global Community. One of the keynote speakers was Dr. M.R. Rajagopal, described as the “Father of Palliative Care in India.” I was worried I wouldn’t understand a word he said. Dr. Rajagopal—whom everyone there called “Raj”–and I had coffee the morning of his speech, and he told me about the situation in India. He started to tell me about a child with cancer who was a patient of his. He told me that the majority of cancers are diagnosed too late to be treated in India. In addition, most people must pay out of pocket for healthcare, as there is really no health insurance. By receiving palliative care at little or no cost through his organization, the child’s family was spared the secondary agony of financial ruin, all too common in India. As he was telling me this, I started to cry, because of the agony of this kid, and of the whole country. I had been used to working with wealthy, successful Indians; this brought out the other India to me.

His talk was not technical, as I was expecting. It was very hard-hitting and very real. At one point, he played an audio tape of a woman patient whose home they went to, and this woman was saying over and over, “Kill me, I don’t want to live anymore.” He really captivated the audience, and afterwards I asked him if there was any chance I could volunteer for him.

I started volunteering with a group here in the U.S. that does fundraising, and I also started preparing to take a trip to India in February to observe the members of Pallium India over there. I met this patient there, named Rahmath. She was a woman in her fifties, and she had a very painful condition called systemic sclerosis. She showed me her hands, and her fingers were twisted. She was also missing some toes because this disease cut off circulation so badly. She would often report being at a “10” on the pain scale (a scale that ranges from “0,” or no pain, to “10,” severe pain). The thing that was so amazing about her was that she was always smiling. I can’t think of her face without thinking of her smile and her beautiful shining eyes. She had this ability to be in this state of acceptance that I’d never seen before. She was such a remarkable person. She traveled about 225 kilometers each way to come to the hospital to get this treatment that treated the disease and also helped deal with the pain.

“The thing that was so amazing about her was that she was always smiling. I can’t think of her face without thinking of her smile and her beautiful shining eyes.”

I actually got to stand in on a procedure of hers done in the operating room. Apparently a lot of doctors won’t try it, because if done even slightly wrong, you can nick a carotid artery and kill the patient. The doctor could only do it with a local anesthetic; Rahmath didn’t faint, she just lay there. After it was over, she turned and gave me another amazing smile.

We didn’t share a common language, so we communicated mostly through looking at each other and touching each others’ hands. She was calm, even though it seemed as if she had more hardships than any person should have. She had had a very, very challenging life. And somehow she took it in this spirit. She had that air of somebody who’s been through a few lives and is going to get through this one. She had the ability to stay in that mood.

“She was calm, even though it seemed as if she had more hardships that any person should have. She had had a very, very challenging life. And somehow she took it in this spirit.”

What was amazing about her was that she went on this arduous journey to get there, she went through the procedure, and then on another arduous trip to get back. And then eventually, she would go back to a “10” on the scale. And yet she would never fail to thank every individual employee, and tell them she was pain-free. And she had this way of bringing everybody into her circle that was so beautiful.

She hung in there, mostly for her family, her children and her grandchildren. She had a strong will to live. As one of the first patients I met, it really set the tone for me to understand just how crucial Pallium India’s work is for relieving pain and suffering in India. This helped me to see what a difference one small, dedicated group of committed people could make in people’s lives.

When I learned she died, a part of me was relieved for her, because clearly the body she was in was giving her no end of trouble, but it was also such an incredibly sad moment; this was a person who had lit up so many people’s lives. Mother Teresa talks about how the people she took care of gave her so much more than she gave them; and this helped me grasp in some small way what she meant. It was my absolute good fortune to meet Rahmath and observe the Pallium team working with her. I feel like her smile is with me for the rest of my life. I was incredibly sad, but it was also bittersweet.

“I feel like her smile is with me for the rest of my life. I was incredibly sad, but it was also bittersweet.”

The organization serves their clients in so many ways. In this case I think it was amazing that she was able to show all this gratitude and thank each person individually, and I think it’s also a testament to how much they did–they changed the quality of her life. She had periods of relief, support, and so much more. The unity Pallium India worked out of felt like a family. And the way Dr. Rajagopal talked to people made it feel like, “I’m completely here for you and your family.” It was this incredible sense of connection, and that really set the tone for my experience.

I started going on their home visits after that, and the integrity they approached each visit with was so inspiring. In India, there’s so much wrong, there are so many problems. But the flip side is that it’s not subtle when people come in and help. Their lives are radically changed by the help they get. Their death is a death of dignity. For example, the woman crying out “Kill me” just needed morphine and an inexpensive waterbed mattress for her bed to relieve the discomfort; and suddenly, she didn’t want to kill herself anymore. She was still dying, but she was out of pain.

I knew that what I was seeing was people getting the care they needed. It wasn’t depressing, it was inspiring, and it was beautiful. I was seeing people that were being appropriately treated. I just couldn’t believe how much they were able to turn things around for people. In the entire country of India, the amount of people who have access to palliative care is less than 1%. But in the Indian state of Kerala where Pallium India is based, it’s over 60%. It was such an honor to go not only to India but people’s homes and encounter their families when this incredibly profound transition is happening. I got to see India in a way that was completely life-changing. The work they’re doing is helping every day. They see someone go from agony to sitting up, smiling, laughing. It’s the most rewarding work there is.

We here in the West now understand that this is the standard way to help people through diseases like cancer. We’re past most of the stigma around it. The developing world is 80% of the world’s population, and we’re realizing that this way of dying comfortably, the dignity of it, comes up. If you’re comfortable, you can die with dignity. Death is the most profound experience you’re going to have, besides birth.

“Death is the most profound experience you’re going to have, besides birth.”

What I got out of getting to know Rahmath and serving was that I saw that she was ready. She was only 53, but I strongly sensed that she was ready and able to die in that state of peace she so clearly showed. It was a sad death in a certain way, but a beautiful death too. She left a legacy of compassion, and she made everyone around her bigger. She was just some little person, she was just herself, and yet she left a ripple of something beautiful. The other thing I realized while there was this sense that, of all of our jobs on this planet, our main job is to take care of people. She did that her way; she took care of her family and was part of a connection with Pallium India. I will never forget her.