It kills me sometimes, how people die,’ Markus Zusak had once written in The Book Thief, resonating with the core humanity that most of us tend to lose. Some women though, like Mansi Shah, not only retain this spark but also actively try to make death, or the prospect of it, a bearable reality.
She co-founded Happy Feet Home, a palliative care centre for kids with terminal diseases, in Mumbai. “The day I stop caring about or being affected by death, I will quit,” she says. We fail to understand or even cope with the death of adults, and losing children under one’s care leads to a grief that is beyond words.
Yet, children themselves can at times be more resilient than the adults around them, accepting death perhaps more gracefully. “Every time I have lost a child, I have had a breakdown,” says this 36-year-old who has been working in this field for close to 15 years now. But why does a young woman dedicate her life to it?
“As a child I used to dream of being a journalist or a surgeon, taking on emergencies even in the middle of the night. Sometimes, I used to scribble on any surface I would get, put on a dupatta and pretend-play to be a teacher. Frankly, I had no set goals for my future,” she says. While pursuing graduation in Bachelors of Art in History, there was a secured future ahead of her — marriage and settling down with her long-term boyfriend. But this was not to be so as the relationship fell through and opportunities for a steady job as a teacher were opening up.
Following certificate courses, Shah joined NGO Akansha Foundation where she worked for eight years. This is where she learnt social leadership skills, connecting with youth and taking up challenging projects. “During my stint with Akansha, I was teaching children at a centre that often faced indiscipline. At the beginning I was a lanky 22 year old, and the kids were just a few years younger. I would not only face open ridicule at their hands but also threat calls. People would call to warn me against entering their locality with threats of bodily harm or even acid attacks. I learnt to deal with such situations,” says Shah and believes that this hands-on experience came in good stead while starting her own centre.
Post this experience, Shah worked at Tata Memorial and then with a centre which cared for children suffering from cancer but had good prognosis and hope of recovery. To put it simply, Shah’s job was to make these kids happy and improve their mental state. “We would come up with innovative ways like giving them a cinema watching experience — complete with popcorn, tickets and even a person guiding them to their seats with a torch — all inside the centre,” recounts Shah.
At this stage in life, she had her close brushes with death: “I remember once we lost a nine-month-old baby suffering from vaginal cancer. I used to be devastated by such loss of life and would take a long time to recover. So when I got fired from the job, my parents were relieved.” But this relief was short-lived as Shah told them after a few months that she was starting a similar centre.
Happy Feet Home is not just a hospice though — it’s a home away from home. All the children, 300 in total and around 70 regular ones — come from troubled and impoverished homes, and find refuge here. “The kids suffer from HIV to Thalassemia and each come with its own set of issues. Mostly they are left orphaned as their parents die, often from the very same disease. The kids are then taken in by a relative, who can probably afford only the very basic,” says Shah. Happy Feet Home is not a shelter and children can’t stay overnight. This centre provides them with vocational courses, financial and medical help, counselling and therapy. It’s not your run-of- the-mill centre with routine schedules.
For instance, every Monday, there’s a dog visiting the centre for play and care with the children. So what is palliative care? “Unfortunately, in India, we consider palliative care only as pain management for final-stage patients. However, palliative care covers a wide spectrum — emotional, financial, medical, etc — and should begin even during diagnosis and treatment. Most importantly, it should be for both the patient as well as the care-giver. I try to connect with the families of the kids as much as possible. We often ignore or overlook the trauma and pain a guardian or care-giver undergoes,” points out Shah.
As the Indian society is gradually opening up to the concept of palliative care, women like Shah have already paved the way forward.