The Power of Listening
“It is lonely. No one listens to me. I haven’t left this house in over 2 years. I have forgotten what the village looks like”. I am sitting inside a small house in Kalale village, 2 hours from Mysore city, Karnataka. Ravi became bedridden 2 years ago, and his condition has gradually deteriorated. With three children, two of whom have yet to marry, his mind is preoccupied with the marriage of his daughters. “I don’t want my family to spend any money on me. They should be saving their money for themselves.” Ravi worked for the post office until he had a fall that left him bedridden. In addition to physical pain, the worries of his family have meant that he has not slept in over 3 months, resulting in slight delirium. Sitting in the room the emotional trauma that all the family is going through is obvious. Approximately 0.4% of the rural population in India is estimated to be bedridden*, however with the relative recent surge in non communicable diseases this number is expected to rise in the near future. While there are a number of causes, paralysis due to stroke, cancer and old age are some of the most common. Pain relief is available at a cost, however, for patients that are below the poverty line, like Ravi, a doctor visit is a luxury.
I visit Chikamma. She has been lying in the same small room with no windows for over four years. Hard of hearing and almost blind, like Ravi, Chikamma had a fall which has left her immobile. Chikamma has one daughter who works in the fields during the day, leaving Chikamma on her own until the evening. While the neighbours look out for her. They admit that because they have small children it is not always possible to keep a close eye on Chikamma. As I approach the door the dog barks, alerting Chikamma that she has a visitor. Mistaking me for a doctor she requests a sedative. She says that sleeping is preferable to being awake since then she doesn’t have to think. I sit beside her and hold her hand. She speaks a little about her day, and about her daughter. Evidently she is lonely. She tells me she rarely says a word all day since there is no one to speak to. Unfortunately my basic Kannada is only able to hold a conversation for about 2 minutes, after which we sit in silence. I see tears well up in her eyes.
It is distressing to see Chikamma and Ravi’s situation, and even more distressing to know that there are hundreds, thousands of Chikammas and Ravis, hidden within homes, unable to walk, and seldom heard. While medical needs are important, it is estimated that 70% of a patient’s needs are psychosocial and spiritual. Our preoccupation with medicines, and medical care often means that we ignore the situation in front of us because we feel that there is nothing we can do. “I see bedridden patients, but just don’t know what to do when I see them,” remarks an ASHA worker, a trained village health activist, employed by the National Rural Health Mission to act as an interface between the community and the public health system. What is important to realize is that we all have the ability to support the Chikammas and Ravis of this world, all that is required is some time, an open heart and a listening ear. “Just knowing that there is someone who cares can often be incredibly healing,” comments Rasina, a volunteer at a community based palliative care programme in Kerala. By developing a strong bond with the patient and patient’s family over time it also becomes possible to develop a better picture of the exact needs of the patient. Often the needs are financial. Money is needed for medicines or a doctor’s visit to alleviate the physical pain or for food, for clothes or even for the marriage of a child. With an understanding of the patients needs, we have the power to become the bridge that links the patient to the community, giving them the opportunity to contribute to the wellbeing of members within the community. In Kerala community members have become so involved in patient care that they have formed their own NGOs that serve the community by providing a total approach to care (both medical and non-medical) and are funded entirely by the community. Not all needs are financial however. “She wanted to speak to a film star,” recounts Arjun, a community member who has been visiting bedridden patients in his hometown of Shimoga, Karnataka, for 4 years. While at first he panicked, determined not to disappoint he managed to get hold of a friend of a friend who knew someone who knew someone who knew a film star (I forget which one). After a lot of searching and multiple wrong numbers he passed on the phone number to Jayamma, terminal cancer patient. “She rang him instantly. Apparently it had been her wish for many years, something she wanted to do before she died, but I was the first person she had ever told about this wish. It filled me with so much joy that I was able to fulfill her dream.”
While caring for bedridden patients may at first seem like a job only for the medical professionals we should remember the power and the skills we all have to heal. Whether that healing comes in the form of arranging for a film star to talk on the phone or for a visit to the temple we should remember the value it has, not because the film star will be able to cure the patient, or the visit to the temple will solve all financial problems, but because we listened, we listened to someone whose voice rarely gets heard.
*estimated from state of Kerala.