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This book isn’t hard to pick if one has read ‘The Last Lecture’ and loves Randy. My expectation from the book was to know more of Randy’s last days, how the family got through the unimaginable grief of watching Randy die and most importantly, the message Jai had for us all who were touched by Randy’s spirit.
The book offers more than just that. You live through Randy’s last days but there’s also Jai’s voice, the woman closest to this man whose death touched millions across the world. At a point Jai says that it in her fatigue, she once felt a tiny bit of irritation that Randy kept the positive, hopeful, brave side of him to the entire world but left the darker side for Jai and some very close family members to see. How devastatingly unfair should that have seemed though Jai and the world understand that this is a side of Randy that he allowed only those closest to him to see, those he trusted and loved beyond expression.
Apart from allowing me to grieve for Randy with details of his struggle, the book offers a deep insight into a subject I have long been drawn to but didn’t know much about except that it requires the heart, mind and soul of a person in commitment – palliative care. Jai’s role as a caregiver is what could be yours or mine and how we pray each night that we do not find ourselves in a situation that she was forced to be in, the role of a caregiver to a dying loved one.
A few years ago, when I was still a young college graduate, I read an article on palliative care in The Hindu newspaper’s Sunday Magazine, one of the reasons why I still value the paper despite its anti-Tibet ideology – for touching upon subjects of this intensity. The article took me through explaining what palliative care is – in simple words, caring for a dying person. For a medical professional, this is a professional choice albeit propelled by a general disposition of personality to care. For a caregiver who is forced to be in the situation because of circumstances, there is no choice. And for a volunteer, the role of a caregiver is pure choice, one that I desire to make.
When I ask myself why I would like to be a caregiver to a fellow human being, in all likeliness a stranger battling death, I almost immediately get the answer – that there’s nothing more fulfilling than being of help to a person in their last days, do whatever in capacity to ease their pain a little bit, to make their journey into Heaven, a little, just a little more comfortable. Easier said than done. The desire remains a desire and I never inquired about the opportunities of volunteering as a palliative care giver. Jai’s journey as a caregiver testifies the monumental responsibilities caregivers are trusted with in addition to being the emotional ships that keep sailing without for once giving in to the tsunamis of grief at watching a person slip away from life.
Cancer can happen to anyone, that we know. In her book ‘Illness as a Metaphor,’ Susan Sontag philosophizes that cancer has come to become symbolic in the 20th century, for repressed passion, therefore offering some speculative illogical yet psycological reasoning that cancer seems to strike people who can handle the biggest shock of their life that it is ending. I can only sigh at what psychological impossibilities we are capable of when it comes to distancing ourselves from the harshest realities of life.
Dream New Dreams shows Randy as we know him, and how proud his wife was to watch her husband approach this extraordinary task as a technological challenge or a major course problem, handling it the way he would handle any other ‘problem,’ we all know that Randy. And then there’s the Randy that’s the cancer patient – through him, I could see a little bit into the weakening spirit of a great human being defeated by an incurable disease, a fatal disease and his constant struggle to overcome yet fully realizing that the overcoming part is highly ambitious, seen in such acts as Randy refusing to use a wheelchair and insisting on walking despite the greatest discomfort and pain.
Between a palliative care giver and the patient, trust is everything. The caregiver is expected to know everything, really everything that can be possibly learnt about the disease and how best to give help. For a professional, there’s time to systematically train in it, for a volunteer there is time to educate self on it but for a family member – it is an ocean to swim, one that they have just been pushed into without a warning.
The enormous emotional tearing apart is a side of palliative nursing that one almost doesn’t get to talk about only because it is obvious and understood. But who can tell the grief of being the one to care for the patient, yet be burdened with the guilt that you are perhaps not doing it right or maybe you will fail, causing your loved one pain. In the book Jai says ‘One particular task I was asked to do was to clean and flush Randy’s PICC line. A PICC line is a thin plastic tube that’s inserted into a vein and is pushed up and up until it gets closer to the heart.’ One can imagine the pain of going through this but what is hard to imagine is the emotional torment the caregiver endures while doing this on the person they love.
A caregiver is expected to be the know-all, to be a warrior against emotions that paralyze ability. A caregiver is expected to make the best choices and when a husband is dying and a child who is completely oblivious to her daddy dying, pleads to her mother ‘Mummy, don’t go,’ while the mummy leaves for hospital is a choice a human heart or mind never wants to make and yet, life gives those situations. A caregiver sees the normal slipping away into an abyss, lost forever – this world and this life will not be the same without this person they are taking care of – father, mother, brother, sister, son, daughter, lover, friend. The world is turning upside down and yet there’s no time to grieve.
In the book Jai mentions the greatness of help she received from friends and family, all playing the role of palliative caregivers at some point or the other, at some level or the other. She speaks of the many humble lunches volunteers at cancer hospitals got her, sometimes the only meals she had in a day.
And yet the result of all this is always pain, death. Randy died. All patients with life threatening diseases die. All patients die. All die. We all, really, die. Why then are we so far away from understanding and being willing to understand the struggles of human life and not do as much as strive to make it easier for others so someday it will be easy for us. Why are we all not caregivers if not palliative caregivers. And if we are giving, can we give more? These are questions I do not want to ask. All I want to ask myself is, what can I do, where, how and when will I begin doing it?
And then how, do I dream new dreams.