”All that goes into a brain – the goodness, the wit, the sum total of enchantment in a personality, the very will, indeed the ego itself – was being killed inexorably, remorselessly, by an evil growth! Everything that makes a human being what he is, the inordinately subtle and exquisite combination of memory, desire, impulse, reflective capacity, power of association, even consciousness – to say nothing of sight and hearing, muscular movement and voice and something so taken for granted as the ability to chew – is encased delicately in the skull, working there within the membranes by processes so marvelously interlocked as to be beyond belief. All this – volition, imagination, the ability to have even the simplest emotion, anticipation, understanding – is held poised and balanced in the normal brain, with silent, exquisite efficiency. And all this was what was being destroyed. It was, we felt, as if reason itself were being ravaged away by unreason, as if the pattern of Johnny’s illness were symbolic of so much of the conflict and torture of the external world. A primitive, to-the-death struggle of reason against violence, reason against disruption, reason against brute unthinking force – this is what went on in Johnny’s head. What he was fighting against was the ruthless assault of chaos. What he was fighting for was, as it were, the life of the human mind.” (page 101-102)
Amusingly, I could only find this book in the ‘large print’ edition so throughout, I had a sneaky feeling that the author was yelling at me.
I really wanted to be wonderfully moved by this book, I truly did. In the past year, I’ve faced the death of two people, including a beautiful and inspiring 9-year-old girl. I sought out this book as a kind of closure.
Although parts of the book are well-written and thought-provoking, I struggled to move through the pages. Of course every parent of a lost child wants to memorialize the person their child was and could have been. I felt this book went a bit too far out on that limb
Part I was a cringe-inducing example of this. The author, Johnny’s father, sings his son’s praises in great and excrutiating detail. At this point in the book, the reader has absolutely no sense of Johnny or sympathy for his plight. First recommendation: Skip Part I and move right onto Part II.
The most fascinating thing part of this book for me was reading about World War II era cancer treatments. It’s absolutely incredible how much progress has been made in the treatment of cancer since then. It’s also amazing how much remains exactly the same: the same push and pull between doctors and parents, the necessity of parents to research their own child’s disease and find solutions outside of traditional treatments (and all of this without the Internet!!!), the wonderful doctors and the not-so-wonderful doctors, the interminable hospital stays and the wonderful nurses.
This book will be fascinating to anyone who has ever watched a child go through cancer treatment and I imagine would be very affirming and moving to someone who has ever lost a child to the disease.