Silent cries-when one is denied hope
He was lying on his side on a single-bedded cot in the corner of a dimly lit room facing the wall oblivious to any other person in the room. It was rather gloomy. The despair in the voice of his wife was that of complete abandonment. His tone I could not assess. He is not talking much for many weeks now, his daughter in law complained. He is suffering from an advanced cancer which has recently spread to his brain. This paralyzed the right side of his body making him bed-bound. No the disease did not render him voiceless, he was well physically capable of speaking, but he chose not to. Maybe we left him mute, maybe we left him feeling unheard and took away the only thing that was making him endure up till now. We took away his hope.
This is not the life story of one man. This has become the life of millions of people in India. Utter despair, that drowning feeling of loneliness, so much suffering. This suffering is worse than the most severe forms of physical pain. Who are these people? And why are they suffering?
These people are the unfortunate ones who have been diagnosed with a chronic non-communicable disease. This disease is not curable. It will be their companion for the rest of their lives. Sometimes it progresses, waxes and wanes, the graph is unique for each person and each disease. It could be hypertension, diabetes, or stroke. Maybe a vital organ has stopped functioning- kidney, liver or heart or advanced lung problem. Maybe something more dreadful- a cancer or a progressing paralysis of the body. These diseases cause physical distress- pain, swelling or a lump, wound, inability to breathe or speak, vomitings, constipation, disability and any combination of these or more problems. There’s the mental agony of a lifelong disease. Irritability, inability to sleep, mood swings, resorting to substances- tobacco/ alcohol, sometimes it may even gravitate into depression. People lose their jobs because of it, lose a sense of self, and lose sense of control over their lives. Nothing remains the same. Their relationships suffer. Many are left by their families to suffer alone. Their social roles change, and their financial condition worsens. Many are forced to sell their property to be able to afford healthcare. Many are pushed below the poverty line and those already poor, their poverty deepens profoundly. Ayushman card does not ensure free healthcare. It does not cover the outpatient consultation or drugs or travel expenses. There’s spiritual suffering too, losing faith in one’s beliefs, losing one’s purpose of being. Not to speak of the adverse effects of treatments and seeking health ‘care’. They are suffering silently, every minute, every day. And yet something else is even more dreadful.
The thing about the medical profession is that we are taught how to solve a given problem. How to control BP, manage sudden worsening of asthma, how to keep the cancer cells at bay. We do that quite well. We don’t know what to do when we CANNOT solve a given problem. We don’t have any such chapter or even a page in any of the medical books, our teachers don’t talk about it. NOBODY TALKS ABOUT IT. And thus we do what we know best- turn them away. ‘Nothing else to be done here’, or ‘we cannot do anything for the disease’. It is this, exactly a sentence like this that destroys all hope and leaves a billion questions unanswered. It leaves the person and his/her family stranded. Only a handful practice the true duty of a doctor, which is to ‘cure sometimes, relieve often and comfort always’. To comfort always means to say that ‘we cannot cure the disease but we can relieve your pain. You need not suffer. You are not alone’. It also means to intend to improve the quality of life of patients and their caregivers through supporting their mental, social and spiritual well-being. It means that ‘something’ can always be done. As long as we continue to believe that death is an enemy to be defeated at all times we will continue to destroy lives of all those we deem incurable.
The proportion of people suffering from these diseases is rising exponentially responsible for almost two-thirds of all deaths globally. And will continue to rise for a long time to come. We must come to terms with it. We must decide as a community, as a society whether we will let them suffer till death or hold their hands and relieve their suffering. Will their voices be heard again or we will be able to offer them realistic hope.
‘Unfortunately the disease is progressing, we are unable to curb it, but we can relieve your suffering and I am with you. I am here for you always.’ Twenty minutes of sitting close to him, holding his hand, looking into his eyes, talking with his beloved family and he started speaking. He spoke of his job, how he used to sing at religious gatherings, he spoke of his beloved family. Tears were rolling down the corner of his eyes when he suddenly started singing-”mat kar maya ko abhimaan”… He just needed an audience who listened.