when breath becomes air

whenbreath

A long time ago, I used to write book reviews for the Winnipeg Free Press.  This is not a book review.  (If you’d like a good review of this book, click here).

Instead, this is my attempt at deconstructing the reasons I sobbed so hard last night when I read the last chapter of When Breath Becomes Air by Paul Kalanithi.

The book’s premise is well documented, so I’m not sharing any spoilers here.  A respected neurosurgery resident is diagnosed with lung cancer.  Eventually, he dies.  In between the diagnosis and the dying, he lives.  He continues his neurosurgery practice, has a baby with his wife and writes this beautiful book.  His wife Lucy pens the last chapter, which is the point at which I cried uncontrollably last night lying in bed, in the cloak of darkness, with my own husband sleeping by my side.

It took me two days to read this book, as I consumed it in two furious sessions.  This book is about answering a calling to go into health care.  It is about epiphanies mid-residency about the humanity of health care.  It is a conversation about what is the value of a life.  It is about facing death, not unafraid, but with one’s eyes wide open.  This book is mostly about living while one is dying.  And it is a bittersweet reminder that we are all dying, my friends.  Paul’s wife, Lucy, said it best:

Although these last few years have been wrenching and difficult – sometimes almost impossible – they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude.

I’ve marked up my own copy of this book, and plan to reference it when I speak to medical students in February about the experience of having a child with a disability, which also includes the common experiences of grief, humanity and gratitude.  I want to pass all Paul’s wisdom on.

My hope for this little book is that it becomes required reading for all health professional students, similar to The Spirit Catches You.  Dr. Paul Kalanithi then will live on and on through his words, through the students he inspires, through the patients he saved, through his own daughter and through this expression of his love.

 

 

 

 

born this way

Aaron and Santa '15

Aaron is eyeing Santa at the Festival of Lights at the botanical garden.  Do you want to go talk to him, I ask Aaron, age 12, who is straddling the little kid/big kid world.  No, Aaron says, his eyes downcast.  But then he stands and watches Santa for a long time and eventually garners up his strength to have a chat with the big bearded man.

Afterwards, Santa shows Aaron his magic ring.  Make a wish, Santa says and Aaron immediately replies:  I wish for a wife.  A wife!  I don’t know what to do with that wish.  I know that Aaron’s wish for a wife is a wish for love and belonging.  I wish that for him too.

Ah, but there is no crystal ball with him, or with any other of my kids.  Would I have imagined ten years ago that one of my kids would be married, another would live with her boyfriend while my youngest son pines for a wife?  No, I had no concept of this future.  What will Aaron’s life look like in 10 years?  The new A&E series called Born this Way promises me a little glimpse into Aaron at age 22.

This new A&E show centres on 7 young adults with Down syndrome. We viewed the first episode with Aaron with great curiosity.  I kept half an eye on my boy’s response as he watched it – he was engaged, but he had no commentary.  I wonder, as I often do, what he was thinking.  I know that he grapples with his identity of Down syndrome just as the characters do in the TV show.

I want to go to Down syndrome school. he told me a few weeks ago.  It would be fun!   Then yesterday he said, I am the mayor of Down syndrome.   And before:  Dad, what is the future?  And, Mom, when you dream, do you dream about sushi?  I dream about meat.  It is impossible to pigeonhole him.  His behaviour is so classic for a 12 year old boy as he tries on different versions of himself to see what fits (our other three boys did the exact same thing as pre-teenagers).  One day Aaron is a rapper, the next day a music guy, another day Mr. Technology.  He is never fully Down syndrome, but it follows him like a shadow, in the shape of his face and the curve of his eye.

I have often thought it would be an interesting experience to have a camera follow us around for a few days.  I wonder if showing the footage to parents who have a new baby with Down syndrome would be comforting or terrifying to them.  Our life just is – it is so normal to us, I have no concept of what it would look like to other people (and maybe I don’t care anymore).  There’s the countdowns to get dressed in the mornings, the negotiation over portion size at breakfast, the obsessive choosing of footwear & water bottles, dates for sushi & movies, the constant string of bad knock knock jokes, the walks to the grocery store, the arguing over chores, the sound of Stampy playing Minecraft in the background, and the loud dance parties downstairs.

I know I’m watching Born this Way to remind myself that everything is going to be OK.  The scenes of these young adults struggling with friendships and love and independence just seem so damn normal to me.  I forget that much of the dialogue is subtitled or that a favourite activity seems to be bowling.   Maybe Down syndrome won’t be so scary or special to the general public who take the time to watch this show.

Perhaps this TV show will be a reminder that life is just life. For the one thing that I desperately want for Aaron (and us) is to be treated just as regular folks.  For life is beautiful and messy and sad and wonderful, no matter how many chromosomes you are carrying around.

 

ted talks

We are doing a cool thing at my work at a children’s hospital.  We are hosting monthly Ted Talks at lunchtime in the library, which is open to all staff and families.  We decided not to show health-related talks, and instead host Ted Talk screenings that our outside of our normal box of health care.

If we think hard, everything we learn can apply to our work & personal lives.  This Ted Talk – how painting can transform communities – tells the compelling story of community engagement by two Danish painters who were painting houses in poor neighbourhoods in Rio.

What did they learn?  Never make assumptions.  Ask the people.  Involve the people.  Be with the people.  Break bread with the people.  These are keys to engagement that applies to every setting:  art, health care, education, brought to us by two funny Danish guys.  Anyone and everyone can be our teachers if we keep our minds open enough.

1.9 kilometres straight up

the view from here.

the view from up there

Next week I’m presenting before an audience of 1,000 people in Virginia.  I rehearsed and rehearsed my speaking notes all morning – my stomach clenching, imagining myself looking out into that infinite sea of faces.

“I’ll just go for a little walk,” I thought, having recently become obsessed with my steps (or lack thereof).

I drove to the North Shore and saw the sign for Baden-Powell Trail to the Quarry Rock.  1.9 kilometres, it said.  That’s not too far, I decided.  (Whoever proclaimed this trail as easy in this review must be a delusional mountain goat).

The first ten minutes were straight up.  Up, up, up.  Up wooden stairs, up and over roots and up a narrow pebble path.  I kept on going, reluctant to give up, and was passed by small dogs and children.  Finally I asked some returning hikers, how much longer? thinking I must almost be there.  ‘Oh about 15 minutes,’ they said breezily.  I noted that they were much younger and fitter versions of me. I blinked, processed that information, and kept going.

Of course I had to pee.  And I hadn’t brought any water.  But as Kimmy on the Unbreakable Kimmy Schmidt says, anyone can do anything for ten seconds.  So I kept going.  Ten seconds at a time.  Then another ten seconds.  And so on.

To distract myself from my poor cardio, full bladder and general dehydration, I mused on the other times I’ve embarked on climbs in my life.

One was when I was about 13, up Coliseum Mountain in Nordegg.  My family was with me, including my spry beautiful grandma, before peripheral neuropathy stole the nerves in her legs.  I recall happening upon a lovely meadow of wildflowers, where we stopped to rest.  Of course we had snacks and sandwiches, as my grandma was as prepared as a Boy Scout. The view from the top of that mountain at the end of three hours of ‘up’ was simply stunning, as was the fleeting knowledge at that young age that maybe I could do anything I put my mind to.

I climbed up and down a mountain many times in Bergen Norway with my young children.  I was living there, broke and heart broken, after my divorce, with a family who had a house embedded on the side of Mount Floyen.  When I didn’t have money for the funicular, I dragged my kids up and down the mountain to get groceries, soft ice cream, and to go for soup at the Zupperia.  At night I’d escape and walk on the mountain paths in the dark, listening to the only song I had brought with me, U2’s Beautiful Day.  Those walks helped me become strong during an exceptionally dark time in my life.

My last climb was more of a long hike, from Bondi Beach to Coogee Beach near Sydney.  It was two plus hours on a cliffside in the blazing sun. I tackled this one after a conference in Australia.  I had flown to Melbourne, covered in fear-sweat for the entire plane ride, to speak at a conference.  I was very scared and very far from home. That beautiful sweaty walk was my reward for surviving the presentation, which actually went just fine.  (All my worry was for naught, which I hope to say in about nine days in Virginia).

Today, coming down that hill was just as hard as going up.  My legs were tired and shaking, and I was terrified of slipping on the wet rocks.  I was grateful for any help I found along the way – the wood bannisters, the flat part of the trail, the rests on the bridges over cascading creeks, the greetings from other hikers, the pauses to pet the hiking dogs.

I needed a reminder why we climb great heights.  We climb those mountains, both real and imagined, so that we remember we are alive.

keep on spreading that love

spreadingloveAn essay I wrote for the Canadian Medical Association Journal called About Dr. Darwish now has public access.  Hurrah!  (I was cursing the obligatory paywall it was hiding behind for a year after publication in May 2014).  But here it is.  It is free for the reading.

I share this story widely in my work with health professionals.  It was written in honour of Dr. Azza Darwish, who was Aaron’s pediatrician after he was born.

This story says to every single person who works in health care: you have the power to put patients and families on a path of strength and hope.  

Azza Darwish did just that the years we were blessed to have her on this earth. Her memory lives on every time there is a kind and compassionate interaction in the health care system. Let’s all keep spreading her love.

making time

IMG_7526My husband and I have a date booked every two weeks.  I’m on a second marriage, and I’m no fool when it comes to marriage maintenance.  Last Sunday we meandered over to Deep Cove, which is a gorgeous little town on the North Shore, about half an hour from our house.

We stopped at a deli and picked up Italian sandwiches for a picnic at the beach. We munched on our lunch and watched the kayakers drift out to sea.  Then we wandered aimlessly up and down the beach trails and scrambled over rocks (silly us, in our flip flops).  We ended up at the village and indulged in maple doughnuts at Honey’s Doughnuts.  I will admit to being a sucker for independent gift shops, so I stopped along the main street at Ahoy and Room 6, and it was at one of those shops (I cannot recall) I stumbled upon a gorgeous magazine called Uppercase.  Buried inside was a smart article called Space/Time by Christina Crook.  It was there that I found this quote.

A common symptom of modern life is that there is no time for thought or even for letting the impressions of a day sink in.  Yet it is only when the world enters the heart that it can be made into a soul…Thomas Moore, Care of the Soul

And that’s all I have to say.  Step away from the computer.  Put away your to-do list.  Go outside.  Make the time to sit amongst the trees and the birds and get lost in your thoughts. For this is but our one precious life, and we must make time for what matters.  xo.

for the crappy days

beautyThis quote is from a woman named Lisa Bonchek Adams, who was my age, a writer and a mom.  She shared her wisdom and heart with the Internet during her time living with breast cancer.  She died on March 6, 2015.  When I am having a crappy day, I reflect back on her words:  written by a gracious beautiful woman who left this Earth far too soon.

There is beauty everywhere.  It is our challenge to look for it when it is difficult to find.  Thank you for this reminder, Lisa.  We will carry on.