Life was mapped out for Savita Nandan, a single mother, until she fell ill. What started as bouts of fever turned out to be a full-blown HIV infection. The diagnosis struck her like lightning on a stormy night. “I cried for days. I did not want to reveal it to my parents; there’s the stigma attached to this disease. At the time, I did not have anybody to take care of me and my little daughter. I had already lost my husband three years into my marriage,” Savita shares, her voice choking.
Author of the bestselling book To Cancer, with Love: My Journey of Joy, Neelam Kumar was diagnosed with breast cancer, not once, but twice. In an exclusive conversation, the author shared with Soulveda, “The first time I was diagnosed with cancer was immediately after my husband’s death. It was a difficult time. I was a single mother with two little children. I was distraught, angry and nervous about what would happen to them.”
Savita Nandan and Neelam Kumar are not alone. Many among us suffer and bear the unimaginable hardships that come with severe illnesses. It is surprising that sometimes, seemingly simple symptoms manifest into something more serious. Seema Cariappa, a banker, was crippled with chronic backache. What seemed like a consequence of bad posture turned out to be the terminal stage of pancreatic cancer. She struggled to live for the next two months. A vivacious person with big dreams, Seema passed away young.
Life comes with its uncertainties, but death is certain. And for those dealing with terminal illnesses, the idea of death becomes more certain than ever. What remains unclear to them is whether they would die today or three years from now. Shoma Chakrawarty, a counsellor specialising in Psychosocial Oncology sheds light on the matter. “When a person is diagnosed with cancer, his life is thrown off balance. Nobody can predict how long the patient will live, not even the doctors. This uncertainty–not just the illness–tests a person’s will to live,” she says.
While their time on earth might be uncertain, it does not stop patients from opting for treatment. After all, they do hope that they might get better. Soon, hospitals become their second home. Doctor appointments take precedence over all else in their schedule. Having blood drawn from the veins leaves needle marks all over the body. Painkillers and supplements become a regular part of their diet. And those suffering from cancer are made weaker and immobile by chemotherapy–the very treatment that is supposed to tackle the illness.
Of course, drugs may help soothe the physical pain. Unfortunately, they don’t work on feelings. The emotional upheaval is the hardest to deal with. These patients feel vulnerable and do not know what to make of their conflicting emotions. Neelam went through denial, anger, anxiety and all stages of grief. “I went into the ‘why me?’ mode,” she confesses.
Dealing with such heavy emotions on a daily basis is difficult. These patients have no idea how they might feel when they wake up every morning. There are days when getting simple, mundane tasks done becomes hard. And then there are some days when they might feel like their former, healthy selves. This instability flares up intense emotions, making them feel hopeless.
This sense of hopelessness often leads to a loss of meaning in life. After all, it is not easy to accept the fact that one is suffering from a debilitating illness and that s/he might be unable to lead a life as usual. Sometimes, this morbidity can plunge them into the dark abyss of depression. In situations like this, psychologists advise patients to find the purpose of their life. “They ask patients to try and connect with people they love and accomplish their goals, as it would help them add meaning to their lives,” Chakrawarty says. It certainly worked for Neelam. She even began writing her first book during one of her chemotherapy sessions. Surprising though it might seem, Neelam turned into a very optimistic and joyous person, despite her illness.
Clearly, it is what a person makes of an illness that matters. Some perceive it to be a problem without a solution. But some take their illness as a challenge and battle it. They consider it their second chance to live. The HIV diagnosis shook Savita, but she did not lose hope. Instead, her prognosis pushed her to pursue her graduation and become a teacher. Today, she is an independent woman, successfully running her household.
It’s not easy to go from victim mode to victor mode. It takes sheer grit and willpower to live with a serious illness. So, it’s not very surprising these patients find solace in self-help groups. Dr Glory Alexander is the director of Bangalore-based ASHA Foundation, an NGO working with HIV/AIDS infected people and their families. She says, “When members of these self-help groups meet, they gain a lot of strength through sharing. When they know that there are others like them, they are able to cope better.”
How patients of serious illnesses deal with the reality of their lives may vary. But each one finds an inner strength to overcome the woes that their prognosis entails. Indeed, Neelam Kumar and Savita Nandan are walking testimonies of how pure courage and optimism can win over the herculean challenges life throws at you.
Ultimately, it is about making the best of the time one has. For some, the driving force may be the realisation of how precious their life is, while for others it may be love for the family. Whatever their reasons, they fight their illnesses with resilience and hope. Perhaps, they understand the value of life more intimately than the rest of us. As the Chinese philosopher, Confucius once put it: “We all have two lives. The second one starts when we realise that we only have one.”
*A few names have been changed.