Saturday 11 July 2015

The Red Book That Is So Wonderful

There's a red book that's been sitting on my desk for months.  It's one of many that have been sent to me for book reviews.  That pile got smaller recently when I came to the cottage for a summer break of reading and relaxing.  I wish I had read this book sooner, because it has changed my thinking about living, dying, dependency and care.  And it made me cry tears of...what's the word for when you read a passage and think "oh, oh, oh".  That happened a lot.

We Know How This Ends: Living While Dying by Bruce H. Kramer with Cathy Wurzer is the red book.  It's mostly written by Bruce Kramer, a professor of education who became stricken with ALS and subsequently wrote a hugely popular blog about his transformation, both physical and metaphysical. Cathy Wurzer is the NPR journalist who interviewed and befriended Kramer.  She provides counterpoint reflections on her own father's dementia diagnosis and what it meant to her.

But this book isn't about ALS or dementia.  No, not at all! It is about what it is like to die.  And the title post-script says it eloquently - it is about living while dying.  I have often wanted to ask palliative patients, "What's it like? What do you think about? What is the meaning of life after all?"  Bruce Kramer tells us all that and more.

It's hard to write this review because there is so much I want to say - and my copy is marked on nearly every page with an asterisk or notation such as 'yes!'.  Kramer says, for example, "I find great comfort in .... the ability to balance between accepting one's aging and mortality and viewing one's life realistically and without despair."  Kramer reflects that for him, "ALS insists I focus on the juxtaposition of loss and growth." Viewing my life realistically and without despair as I focus on the juxtaposition of loss and growth pretty much sums up my most fundamental challenges as a caregiver.

And perhaps these are not just challenges of the palliative, the infirm or the caregiver - they are the challenges of being human. And Bruce Kramer is deeply human.  He offers us guideposts to being comfortable in the human condition... being at peace with our own mortality.  Yet, he is human.  After two years of his body being ravaged by ALS, Kramer writes simply, "The fact is that I have handled nothing." But then he circles around again and says, "I can mourn each loss, but I must not allow myself to become comfortable on the new plateau where it lands me, for that is not the way of life we are granted."  Kramer says often that ALS is just normal living and dying speeded up and I believe he's right.  There are so many philosophical lessons here for caregiving about reconciling hope and realism, growth and decline - all conundrums I seem to wrestle with in slow motion.

There are so many true words of wisdom in this book.  I can only urge you to buy and it read it for yourself.  But, I'll leave you with this: "I would argue that bravery goes beyond the desire for a good death.  It is trying to live a good life when your old version of life has been kicked in the teeth."  And I know that caregivers everywhere feel a sting in their mouths almost every day.

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