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The colour of hope

When I signed up as a volunteer, I had no clue that painting and colouring with a child can be so difficult. I thought I was prepared.

The colour of hope

Monday December 29, 2014,

7 min Read

When I met Nasreen she was not sleeping on her bed. She had occupied the table next to her bed and was taking a break from what seemed like an extended playtime with her father. Between them lay the snakes & ladder board game with more than one dice and enough coloured counters to accommodate 10 children!

Nasreen was taking a snack break. The half-peeled, large banana in her hands rivaling the weight of her frail body. Between mouthfuls, she would smile a wide smile in answer to my questions. The kid on the other bed, an older boy, was demanding the board game, and she was stalling him with her frown simultaneously.

Every Saturday, I lock my demons in the deepest recesses of my chest and conjure the patronus charm. The Art Heals Program, started by The Valley School in collaboration with St John’s Hospital in Bangalore, is a projection of positive feelings to bring colour and laughter to children and their parents in the hospital.

Armed with art materials, board games, books and a lot of hope, teachers and parent volunteers of the school visit the pediatric nephrology ward, oncology ward, and the general pediatric ward, including the day care ward through the week to spend time with child patients, bored siblings and waiting parents.

Nasreen caught my heart the first day I met her at the oncology ward. The spark in her eyes burnt bright even as her body was being consumed by Leukemia. All of four-and-a-half years, she was the older child of her parents. I was a bit surprised to see her accompanied by her father, who was patiently agreeing to all her demands. It is usually the mothers who are co-battling every second of the illness. He told me that Nasreen’s mother was at home with their younger son, and was not in a condition to spend time at the hospital because she was expecting another child.

When I signed up as a volunteer, I had no clue that painting and colouring with a child can be so difficult. I thought I was prepared. At our volunteers’ meeting, we had set some ground rules so as not to infringe upon the patient’s rights and to carry out our work without any obstruction to their treatment. The theory was clinically precise. But in practice, it would take a lot out of us.

The initial days I would avoid eye contact with the children. It is not easy to see a child’s strut confined by the weight of the illness and an over-sized hospital gown. You need to train your mind to overlook these sights, and instead concentrate on occupying the child and her family in activities, which hopefully break the monotony of the treatment drill.

The hospital smell is another thing altogether. All the world’s disinfectants cannot wash away the smell of fear and foreboding that hangs in the air. It clings to you like second-hand cigarette smoke.

Our first task was to transform the drab walls. The art teachers brought alive magical creatures in hues of brown, blue and earth red. One wall in the oncology ward brought the outdoors in — creepers crawling from the floor to the ceiling spreading tendrils and leaves all across the wall. Some children even joined us in filling out the branches and twines with leaves, flowers, butterflies and birds.

It was against this backdrop that I saw Nasreen again. Her bed was pushed against the painted wall. She had her back resting on the wall, her face having broken into a big smile as if taking vicarious pleasure in the little secret that the painted parrot seemed to whisper into her ear. Had it not been for the smile, I would have thought it was another child. The difference in a matter of a few weeks was stark. Her lush, black hair now rested scantily on her head, sacrificed to chemotherapy.

According to the good doctor (Pediatric Hemato Oncologist), who initiated the arts program, and who requested anonymity, the most common cancers found in children are Leukemia, cancer of the bone marrow and blood cells (it accounts for 30 percent of all cancers in children), followed by brain and central nervous system tumors, making up 21 percent of childhood cancers. Lymphoma, cancer of the lymph nodes, is yet another common type that affects nearly 10 percent of the children. “I would say about 70 percent of cancer in children is curable, and the figure can be higher if we have efficient early-detection centres spread across smaller cities and towns.”

Like all professionals, the good doctor relies on his skill and ability to treat children who come under his care. I recently found out there is yet another equipment he uses to make a difference. It is hope. “You volunteers only meet the children who are admitted in the ward. These are children who have to be admitted for care because they have either developed an infection or need to be under observation during chemotherapy. There is a whole bunch of children who come to the day care ward, finish their chemo session and go back home,” he tells me when I express concern about Nasreen.

After my last visit, I was unable to go back to meet Nasreen as we had a program to train nursing students in art and craft work. There was puppet making, simple weaving with wool, crochet and clay modeling. The idea was to show the young women a different path that led to wellness not only for themselves but also for those under their care. Wouldn’t it be nice if the ‘sisters’ fashioned finger puppets out of old newspapers and rags to tell their patients stories? Perhaps a better way to look after a sick child or the kind of nutrition required for a family member recuperating from an illness?

Recently, when I went up to the wards, I peeped inside the oncology ward to see how Nasreen was doing. The last time I saw her she was sleeping, which made my heart heavy because all the volunteers have always found her up and about filling the room with good cheer. The fact that her hair was completely gone sank my heart deeper. I found a baby and her mother occupying the bed that in my head belonged to Nasreen.

People volunteer for different reasons, the underlying motive being to help others less fortunate. Traditionally, volunteering is seen as a form of charity, which is based on selflessness and altruism. I signed up for this as an exchange, but I am taking more than I am giving.

When the children come to the art room, their faces light up instantly. There are some who like to colour. Others, who prefer to sit with their mothers as they attempt to build a scenery one puzzle piece at a time. All the activities attempted with one hand as the other is bandaged for holding the needle through which the saline drip is administered.

I like drawing for the little ones and am happiest when we pick up a story book to read. In such moments we forget that we ail.

I learn that Nasreen has been shifted to the ICU. “She is very serious,” the nurse informs me. The infection she has picked up has become severe. I want to take the wall that we painted with the leaves, the flowers, and the parrot, which sang in her ears, beside her ICU bed.

I hope and pray that the cycle of art-mimics-life-mimics-art remains unbroken and that like Johnsy in O Henry’s ‘The Last Leaf’, Nasreen lives.