When Breath Becomes Air - Your questions answered by Lucy Kalanithi

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At the age of thirty-six, on the verge of completing a decade’s training as a neurosurgeon, Paul Kalanithi was diagnosed with inoperable lung cancer. One day he was a doctor treating the dying, the next he was a patient struggling to live.

When Breath Becomes Air chronicles Kalanithi’s transformation from a medical student asking what makes a virtuous and meaningful life into a neurosurgeon working in the core of human identity – the brain – and finally into a patient and a new father.

What makes life worth living in the face of death? What do you do when life is catastrophically interrupted? What does it mean to have a child as your own life fades away?

Paul Kalanithi died while working on this profoundly moving book, yet his words live on as a guide to us all. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient, from a gifted writer who became both.

In February of this year, 15 reading groups were offered the chance to read When Breath Becomes Air and put any questions they had to Paul’s wife, Lucy, who wrote the epilogue to this extraordinary book. Below are her responses.

In writing the epilogue (which is beautiful and inspirational) did both you and Paul decide what content was going to be included in it (for example, the poem) or was this part totally your space to write down your own reflections?

Paul never knew I would write an epilogue! The idea came about after Paul died as he was finishing the manuscript. At first, I balked at the idea, which came from the publisher. Maybe that’s too strong a word, but I was surprised – I’ve never considered myself a writer. But I quickly realised that the way Paul died was part of his story, that perhaps if he could have written it himself, he would have. So sharing that started to feel urgent, and I had the chance to reflect on Paul’s life, and on grief, and on what’s been happening since Paul died. In the end, I’m very glad I had the chance.

Throughout the book, you come across as Paul’s ‘rock’, providing strength and security to your marriage and having your daughter at the same time your husband’s life fades away. I would have utterly crumbled. What kept you strong during these intense life moments?

First off, Paul was very supportive of me. To our friends and family he said, “I want everyone to take care of Lucy so that Lucy can take care of me.” He knew how important family caregivers are to patients’ well-being. For me, a few things were critically important for my coping: exercise, sleep, mindfulness meditation, and social connection. But after Paul died, I was pretty insane for about a year. I was functioning well at work, Cady was thriving, but I had very severe tingling in my hands and I was incredibly lonely. Slowly that pain started to lift. Now, the world is bright again for me. I feel connected and happy. The pain is much less, though my love for Paul remains exactly the same.

You have used an Emily Dickinson poem in your epilogue. What are your favourite books/poems? Did any of these provide inspiration and support during the time When Breath Becomes Air was being written?

Here are some poems I absolutely love, which are all about vulnerability or about accepting both joy and pain as part of our lives. The last one is about accepting death. It’s gorgeous.

During grief I also liked Elegy to Philip Sidney which is by Greville, the Elizabethan statesman and poet who wrote the sonnet (epigraph) from which Paul drew the title When Breath Becomes Air.

There’s a new memoir out this year, too, that The Washington Post called “this year’s When Breath Becomes Air.” It’s The Bright Hour, by Nina Riggs, an American poet who died of breast cancer this year just before she turned forty. It feels like she could have been in a conversation with Paul, talking about living and dying, and she weaves in her thoughts about motherhood, too. It’s fresh and insightful, poetic and exquisite. I recommend that, too.

How has the worldwide success of the book impacted on your life?

The success of the book has meant a chance for me to talk. First, about Paul and about grief. And also as a doctor, about medicine and about how we match our healthcare choices to our personal values. I poured myself into a TED talk I did about that last year.

When Breath Becomes Air is an incredibly heart-breakingly inspirational and hopeful book. What advice would you give to people to keep them strong during similar, heart-breaking times?

For people facing a serious illness, I always recommend seeking a palliative care team in addition to usual medical care. Hospice is a tiny subset of palliative care, but palliative care itself can be for anyone with difficult symptoms or medical choices – they lift the burden.

Have you read the book since Paul’s death?

Yes, billions of times. First, I worked with the editor to complete it and shepherd it to publication. Since then, I’ve read it over and over to connect with Paul. The last paragraph of the book is my prized possession – a gift for our daughter Cady, a love letter written directly to her. I have it memorized without even having tried.

How have you felt about the international success of Paul’s book?

It’s incredibly exciting – translated into 40+ languages. I love the UK cover, which is so striking and so different from the US cover. Some of my favorites are the Asian languages or Hebrew or Russian – languages where I can’t even tell which of the text on the cover represents Paul’s name. But it’s still his story. It’s so wonderful for me to see. He would have been so happy to have had this legacy, to have entered a canon of books he so dearly loved.

You say in the epilogue the book is complete “just as it is”. If you could update us two years on from Paul’s death what would you write?

I’d probably want to talk all about Cady, who’s about to turn three. She’s a spitfire, very independent, funny, loves books. Where did she get all that from?! Our family is doing well and Paul’s book has been a balm. We visit his grave often, still. And I’m feeling happy and feeling like I can find new love, too.

Do you think that in writing the book Paul has helped you to come to terms with his death or is it hard to share his experience with others?

It’s been almost categorically great to share our experience with others. As doctors, the substance of the book was profoundly personal and profoundly intellectually important to us. And the way Paul faced his life and death have helped me face my own grief.

We all found the epilogue very moving. Have you considered writing yourself?

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I really hate writing (while Paul certainly didn’t), but now that I’ve met some other writers, I understand that many writers hate writing. So I’m not sure that’s an excuse anymore! But I’m a talker instead! I’ve been speaking at medical conferences about the experience of being a patient, which I can translate for doctors’ ears. That’s felt wonderful.

How is life now for you and your child?

We’re happy. Cady points at Paul’s book now and says “it’s daddy’s book!” And now it’s up to me to tell her about what that means.

Thank you so very much for your thoughtfulness and your support.

You can share your thoughts on When Breath Becomes Air by leaving a review on Amazon, GoodReads or Reading Groups for Everyone.

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