There are some days when our son is just not well enough to go anywhere. When morphine is the best friend he has, his only relief from the worst hours of his torturous condition.
Recently a pain management expert spent time with our son encouraging him to venture out more to distract himself from a level of pain that threatens and often succeeds in consuming his every waking moment. As a mother I am desperate for him to do this, an attempt to enjoy life. Sometimes there are days when this is still possible, but on other days it is not and on the worst it is a race to hospital.
Literature has the potential to give readers an insight into a different life, a life that is better or worse depending on the reader. Books that focus on illness attempt to impart an understanding of the devastation felt by those crippled with a grave illness.
“Whenever you read a cancer booklet or website or whatever, they always list depression among the side effects of cancer. But, in fact, depression is not a side effect of cancer. Depression is a side effect of dying.”
So begins John Green’s extraordinary novel, The Fault in Our Stars.
In their recent books both John Green and Chris Cleave have attempted to demystify the workings of a mind whose predominant function has been resigned to pain management. In both cases they have chosen cancer as their illness and a child is the one afflicted with the illness. Both books shine a light on the relationship between the parents and the child. The similarity between the two is that the children are constantly concerned for their parents. In Gold, Sophie wants to keep her failing health from her parents so they can continue with ordinary life and in Green’s novel, Hazel is keen for her mother to fill her life with things other than her care so that when she buries her daughter there is still something for her to occupy her days. Hazel Grace is her only child.
What is interesting about Green’s novel is that he does not sentimentalise the death of a child. Hazel and her friends use humour to circumvent their illness, but the harrowing nature of their condition and the pitiful side effects are never romanticised.
At the end of his book Green acknowledges the medical experts who assisted him in his research for this book. Similarly Chris Cleave shadowed a doctor at Great Ormond Street Children’s Hospital in London in order to get the right tone for his book, even hanging out with parents in the coffee shop at the hospital.
Things such as the pain scale which Green describes are routine when caring for a child who is gravely ill. “How are you feeling” no longer works? The 1-10 scale is the only way of gauging the level of pain and the medication necessary to alleviate that pain.
“When you go into the ER, one of the first things they ask you to do is rate your pain on a scale of one to ten, and from there they decide which drugs to use and how quickly to use them.”
Writers have always had a fascination with illness and its effect on a family and the wider community. Gold and The Fault In Our Stars are both successful in depicting the ravages of illness. Both books have also been commercially successful.
Traditionally books that deal with illness or are supposedly helpful for those undergoing treatment have words in their titles such as “blessings”, “journey”, “God”, “healing” or “searching for meaning.”
Thanks goodness we have at least a couple of books that finally look at with the raw emotions of coping with something so harrowing without it having to be a “blessing”.
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