In our book club meetup yesterday, our host asked us – when is it ever okay to make the decision to end a life or “pull the plug”? The easy answer, I think is that if a person is choosing to end their life because of extenuating circumstances, then its okay. This is also perhaps the vaguest way to frame this. Because what is an extenuating circumstance? What separates a suicide from euthanasia from an assisted killing – if at the end all of this leads to a loss of life with explicit consent? What if the person is unable to make that decision? What if the person is a toddler – who leave alone grapple with something so big, can’t even find their way from A to Z in alphabets? Does it then become okay for the parents to have the power to choose for a little kid?
On the day of our book club meet I heard from a family that we’re close to. They’ve a daughter the same age as Aadya, someone who has the same diagnosis as Aadya. They were the one other Indian family in the US in the same boat as us. When we first received Aadya’s diagnosis, they were there just a few steps ahead and yet offering to hand hold us. Every complication Aadya has been through, they had been through as well. So many things that Aadya loves, their daughter loved too – like music. We’ve never met them in person and yet I knew this child. On the 16th, she went into cardiac arrest and had to be airlifted to CHOP. Over the next several days her medical team fought one thing after the other – until it looked like there was nothing to do. They eventually lost her on November 7th. She was eight. She was also someone, who had fought hard every single day of her life, whose very existence was an act of rebellion, who along with her family has defied expectations for the last six years. I’ve not known another family to have fought as hard as they did. Like her mother said- she did not deserve this. They did not deserve this.
For our medically complex children, ventilator is a means to help them conserve energy on the best of days. It is not life support critical to their survival. But for a sick child, that is what it becomes. And then the final decision to forego that support falls on the family. It is a worst case outcome we’ve always known. But in an effort for self preservation, it is an outcome we’ve never pictured – afraid that the mere thought could manifest it. So for families like us, who are caregivers to kids or seniors – the question of when is it ethical to end a life is not a purely academic question. And because of this one reason, my feelings for this book are inextricably intertwined with the phase of life when I read it.
In a book like this – when a rare disease is used for its shock value and to add a worst case scenario that justifies the story that follows, what I felt when I initially read it is irrational rage. When talking about medical diagnosis in a book, there is clearly different ways to do it. Take – Still Alice – a book which was as educational as it was drama. On the other end of the spectrum is this book. For a thriller and court-room drama, even when I see why the author would choose a condition like EB, I still choose to sit in judgement over them. To be honest maybe families who face the reality of living with EB may appreciate a book that must have done more to raise awareness than screaming from any social media platform may have. But to use a child with a rare disease as a prop, and to not use the opportunity to maybe educate and shine a light on EB or to help the community around it does not sit right with me. Did Max have no good days? A crime thriller is far from my favorite genre though and I know this is a highly prejudiced view based on my frame of mind when reading and discussing this book. But it is what it is.
Now that the bigger feelings are out of the way, the one thing that I did like about this book is the mirror that this book shows on what society and even families expect from women. When Leila questions what kind of a mother Yasmin is because she never answered a call when out spending time for herself. When Yasmin deems that motherhood is a race or a competition that has given her an edge over Leila who has no kids of her own and is wildly more successful than Yasmin. When Leila’s resilience in the face of loss of pregnancy is also used to crucify her because we expect a stock reaction to loss which Leila refused to give. Societal expectations and pressures are engrained in the book as it is, in our lives.
My book club was divided over Leila’s culpability. But to me, Leila was the one who inspite of having murdered a child came off as someone with strength in a sea of characters in all shades of dark grey. From caring for her 11 year old sister to committing a murder – all her actions were motivated by love and the desire to do what is right. I have come to realize that good intentions alone count for nothing in this world. And yet – for this colossal lapse of judgement, Leila at the very end, was the only character who even had the strength to own up to the consequences of her action. In the end, Yasmin, Will and Andrew – were all characters deeply flawed and yet with no desire to own up to the mistakes they had each made.
For a crime thriller, this book was thought provoking in lots of unexpected ways. So for fans for meaty crime thrillers, this is definitely a great read..
PS: I wrote this several days after the book club in fits and starts. This is what I remember of it now at least.