She is finally here. A ray of hope amid constant darkness roaming around our family. My granddaughter had just made her way out to the world. It was a less pleasant journey after three days in the ICU following a Cesarean Section delivery. Thankfully she is completely fine now.
Oh, did I introduced myself to you? Let’s start with my name. No, forget it. Shakespeare had rightly said- “What’s in the name?” Changing my name would not change even a tiny bit of my problems. Had it been otherwise, now I have all the time in the world to keep changing names to lessen my worries. No, life does not work that way. In fact, most people don’t call me by my name anyway. I am a terminally ill patient which an advanced stage of pancreatic cancer, the diagnosis I came to know when I overheard the conversation between my son and the doctor. That was sometime back before my family finally revealed the diagnosis to me and I had to pretend and act with absolute surprise and shock. What a classic simulation it was!
All I have is few more months to cherish. I was never really afraid of old age or even death. I was never worried that my children would abandon me. Even if they did, I am financially very secure. No. Never. They won’t even think about it. I viewed death as a mere transition and essential component of the life I was living even before my diagnosis. The day you were born, the only guaranteed stuff about your life was death.
Everybody is so happy and joyous around my granddaughter. She had just commenced her journey of life. Our relatives are coming just to have a glance at her. The celebration is real. I just stepped outside my room to get some fresh air. Alas! I could see a complete paradigm shift in the setting every single time. I could sense the overwhelming emotions of sympathy, sorrow, and pity towards my condition in their expressions and conversations. I don’t need this. Not at all. Why is everyone so terrified to bid goodbye when they have so many opportunities? Unlucky are those who died unexpectedly and never had one good chance to say goodbye. Yet, I feel so miserable. Why the end of life cannot get even a portion of beauty, care, and respect as the beginning?
Nobody talks to me nowadays like they once used to. Everybody is silent or at best having a very shallow conversation. Even when I commit a mistake, no one even dares to ask about it. I don’t know how everything turned around. Nothing seems normal. Yesterday my eight-year-old grandson was slapped by her mother just because he persuaded me to tell him a story. Nobody wants to discuss my condition. Yesterday I watched a movie ‘Joker’ in which the main character states a very powerful line — “The worst part of having a mental illness is people expect you to behave as if you don’t.” It’s exactly the same. Nothing is normal. Everyone is so reluctant to talk about my illness. If this is what you people believe to be normal then please don’t behave normally. Talk to me. I am not fragile. I would not break down. I would never want to entangle my maturity with an inferiority complex at this stage of life. Talk about my death. It’s all I want to talk about. It may invoke fear but alongside a burst of liberation to my soul and my desires. Everyone has to go through it but no one seems to have the courage to utter a word. You could spend all day talking about the probable future achievements of your daughter. Why don’t I get the same appreciation when I had already achieved all of them?
“Medicines, mother.” My daughter in law is yet again with those dozen pills I consume every day, none of them seem to be working as far as my suffering is concerned. The pain is so severe that taking these pills seems like a docile drop of dew in the scorching heat of the sun. She is really taking good care of me. I remember a time when we would spend the entire day and nights chatting together. She was just like my daughter. I know she still cares for me. The closest conversation she came up with after my diagnosis was the reassurance that I will be living for many years to come. Darling, that’s not what I wish to believe in.
I had once heard about a place where people like me would be staying together till the time of their death. My son doesn’t want me to go there. He feels it’s more like an old age home and he would never like to put me up for that. He had tried every possible solution to help prolong my life without a cure. Even though I had spent many glorious decades of my life, he won't want to take dying as a normal process. He will never say it but deep down he believes that the only way he could pour out his love is to prolong my life as much as possible. He would never ask me about my last wish or my spiritual or religious needs. When the doctor offered something known as palliative care, he denied it at the first sight and argued that he was not giving up on me anytime soon. I have no idea about the treatment but I have an intuition that it would be somewhat more fruitful than the hope of betterment and concurrent levels of constant disappointment. Sometimes I wish my son hated me and transfer me to a place where I could at least be in the reality of what I am going through rather than the denial and utter delicacy about my life.
I have read a lot of books since my condition started. The depth of books would lift me to the height of knowledge and tranquility I had not been to achieve otherwise. In his 1973 classic, ‘Think and Grow Rich’, the author Napoleon Hill states that though the religious leaders may not be able to provide a safe-conduct into heaven nor, by lack of such provision, allow one to be so unfortunate to descend into hell, but the fear of the slight possibility of the latter is so powerful that it shatters imagination, paralyzes reasoning and sets up a fear of death. On the other hand, removing death out of life would most certainly make life monotonous, an epitome of procrastination and painfully dull. So, death is not inherently meant to be feared and there are better alternatives to the most inescapable reality of life. Sadly, no one around me seems to internalize the reality.
Steve Jobs always considered doing things he would do on the last day of his life. He further adds “Because almost everything — all external expectations, all pride, all fear of embarrassment or failure — these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose.” Another inspirational story about death is of Randy Pausch, Professor of Computer Sciences at Carnegie Mellon University who was given only 3 to 6 months to live by his doctors being diagnosed with pancreatic cancer. After the diagnosis, he was listed by the Times Magazine as one of the ‘World’s Top-100 Most Influential People’ through his speech and book.
I am not even close to the achievements of these individuals. But I too had been at the pinnacle of success in my life. And let’s forget about achievements either. Humanity and dignity should never be conditional. I am a religious person but unlike many self-proclaimed gurus claim, I do not know what happens after my death a few months later. Maybe I would be transformed into another form of energy. I could go into a long peaceful sleep or I could be born again. To be honest I would prefer to born with a brand new body waiting to be cherished and celebrated at the beginning of my journey, the moment I could hardly gain at the end. I couldn’t get the end I wanted. Not in the end I wanted you all to be inspired for your own path towards the horizon. Nevertheless, as Atul Gawande has said in his book ‘Being Mortal: Medicine and What Matters in the End’, “Endings matter, not just for the person but, perhaps even more, for the ones left behind.”
Eleven days later, there was the naming ceremony of my granddaughter. She was named ‘Etisha’ which means beginning after the end. Oh, damn. What’s in the name, anyway?
(A narrative essay on unfulfilled needs of a palliative patient facing retraction of reality at one end witnessing rejoicement of life at the other end of the same spectrum in life.)
