I Wrote A Book

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The Late Great Audre Lorde

This is the story of my book. Bird’s Eye View is a collection of stories of my life lived in health care – from a failed nursing student, to a health care bureaucrat, to the mom of a child with a disability to a patient and family engagement consultant to a woman living with breast cancer.  It is written for patients + families and anybody who works in health care – clinicians, staff, health faculty students and administrators.  It is for anybody who has an inkling that stories can change the world.

I started writing this book two and a half years ago after I left my job at a children’s hospital.  I was in deep grief when I resigned, but everybody said to me:  Now you can work on your book!  So that’s what I did for three whole months.  Then BAM I got diagnosed with breast cancer.  That was kind of a bummer and shut down the book action for a very long time.

During those dark hours, I barely managed to keep a journal, but I am thankful I did.  I called my journal Grace Period although I was hardly graceful.  I was what Arthur Frank calls in The Wounded Storyteller a narrative wreck.

I finished treatment and waited out my narrative wreck.  You may have read some of my narrative wreck pieces here on my blog. I was so neck-deep in crisis and grief that I couldn’t continue the book.  Plus, the book was about kindness and compassion in health care and to be honest, as a cancer patient, I wasn’t being treated with much kindness or compassion in health care.

I put the book aside and took poetry classes, regularly visited my therapist, tried meditation, did some paid consulting work and went for many long walks.

A year and a half after I was diagnosed I could finally bear to look at the book again.  Since some time had passed, I started writing more reflective chapters about having cancer. I added them to the words I had already written about being the mom of a kid with a disability.  The caregiver had became the patient and this was hard stuff for me to reconcile.

In January I finished a manuscript, all 100,000 words of it.  I started shopping around for a publisher and received a number of rejections.  This was not unexpected but it sure was disheartening.  Some of the rejections were plain mean.  One Toronto publisher said: I passed your manuscript around to our editors and there was no enthusiasm for it.  Ouch.

After every rejection, I paused to lick my wounds.  The Toronto-publisher route was clearly not working well for me.  Then I was introduced to Hambone Publishing in Australia.

I’ll leave the Hambone story for another time.  It is a beautiful tale of serendipity and connection. I will say they are a perfect fit for me.  The manuscript is with my editor now and she is doing the hard work of a structural edit. 100,000 words is too long. I’m very pleased that I found a fabulous illustrator – she is a local Vancouver artist – for the book’s cover.

I’m going to do this book my way.  I’m committed to the Patients Included principles for events.  I will bring other caregivers and patients along with me on this ride.

Bird’s Eye View will be released in the fall of 2019.  If you would like to follow along with my book adventures, fill out the form here to get on my mailing list.  You can also follow @birdseyeviewbook on Instagram.

I’m doing the thing I’m most afraid of, and I’m both scared and excited all at the same time.  xo.

 

He doesn’t just have his mother’s heart-shaped face

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This essay was originally published in the Globe + Mail on October 6, 2005.

I gave birth to my baby boy, and he was beautiful. He was the product of a second marriage for both of us, evidence that broken people can heal. He symbolized hope and joy. He was our love child.

His birth was everything I wanted. No interventions, no medications, a baby who slipped out naturally after a few pushes to meet his parents. Even in the late stages of labour, Mike and I were giddy with excitement in between each contraction. “The baby is coming,” Mike kept saying, and I would grin and nod and kiss my love before another wave of contractions pulled me back under.

We took him home after 10 hours, and he was all wee and jaundice-yellow. He was a quiet, soft, sleepy baby with a sweet mop of hair on top of his head. His round face was mine, and his eyebrows were blond. He was our little peanut, our button. His dad and I fell deeply in love with him.

Then the dark clouds started to settle in. At the end of his two-week checkup at the clinic, the doctor hesitated. I could tell he wanted to say something.

“Do you remember we talked about prenatal testing?”

Yes, I had. I had declined the testing. I knew I’d carry my baby to term no matter what.

I looked him straight in the eye, and took a deep breath. “Are you trying to tell me that our baby has Down syndrome?”

Retrospect is such an easy thing. I had not forgotten the day after Aaron’s birth, when I had gotten up after a long night of scrutinizing my boy and typed “Down syndrome” in the Google search engine. I had broached the subject with Mike, and he had scoffed at me for being paranoid. Then I had asked the public health nurse later that day if she thought Aaron had Down syndrome.

“Yes,” she had said gently, but then she had inspected the palms of his hands and his toes and concluded that he had a heart-shaped face like his mom, and eyes like his dad — that’s all. No other signs. So we filed away this scare in the back room of our heads and carried on. Whew. That was a relief.

But when the doctor mentioned the prenatal testing, I knew. I could hear my heart beating in my ears. I was holding onto my baby for dear life. “Oh,” I said. “Can I use my cell phone here?” I had to phone Mike, immediately.

I don’t recall our conversation. I am sure I sounded as if I was being strangled — and, in a way, I was. I do know that I sat in that examining room, nursing Aaron until Mike arrived. I don’t cry easily and there was a choked bundled of tears sitting just beyond my throat. I remembered to breathe.

Mike wanted to carry Aaron over to the lab in the hospital. He wouldn’t put him in his stroller, and he marched proudly through the hospital corridors cradling his son. It was as if he was saying, “I’m looking after my boy, no matter what!” They drew blood from Aaron’s little arm. Mike and I didn’t talk much — I felt sick as the needle went in and Aaron gave a cry of protest. We had to wait two long weeks for the result.

We were back at home. Aaron was napping in his car seat. The day was beautiful . . . mid-April, sun streaming out of the prairie sky. We sat on the balcony of our house, watching Aaron sleep, discussed how our doctor was wrong, how he was too inexperienced, how he had surely misdiagnosed.

There was a waft of music coming from the house across the alley. I strained to make out what song it was — it was coming from an open bedroom window. A young man lived there with his parents. He had a rare chromosome deficiency and is one of the few people with such a condition to be alive. He wasn’t expected to live beyond a year old, but there he was, 20 years old, blasting music out of his window.

The song finally became clear. It was a song from my memory of junior high school dances. Our neighbour was playing ABBA’s Take a Chance on Me.

The results came back after the two weeks. And yes, our baby has Down syndrome. The deep chasm of grief seemed endless when we found out that the baby we expected was not the baby we received.

But slowly the sun peeked out from behind those clouds, and I was able to get out of bed and go about my business. My baby, now two years old, did not allow me to stay stuck in the grief.

Instead he holds out his chubby little hand as we trundle down the sidewalk, both delighting in this warm fall day. My ABBA-playing neighbour is outside as we pass his house, and his face lights up as I greet him by name. Take a chance on us, indeed.

Twenty Days Last May, part II

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(A prompt from my writing class:  describe a moment you are at peace)

For twenty days in between appointments, I walked. I walked in concentric circles around the hospital – down to False Creek, up the Cambie hill, west to the fancy shops and east to the hipsters with their big beards.

For twenty days, I looked for a picture. In the hospital, all my photos were taken in black and white. But outside out on my stroll, I searched for colour.

I snapped a tabby cat sunning on a step, the city view peeking through the condos and a bicycle parked against a tree, its basket filled with flowers. Once a crow flew at me on 10th street, angered I had passed too close to its babies. I continued on. There was a coffee shop filled with books, a burgundy mosaic pattern on a store floor and the blossoms slowly filling the tree canopies with early spring.

On my last day of those long 20 days of treatment, I spotted some graffiti on an alley wall. It was a perfect pink circle with stencilled words that simply said – you are here.  And that is enough.  xo.

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the hospital world according to aaron

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The Journal of Paediatrics and Child Health in Australia – a publication of the Royal Australasian College of Physicians – has an awesome feature for patient/family stories called The Patient’s Voice.  Yes, this is an academic journal that accepts stories.  They published my piece The Hospital World According to Aaron this month, and I’m pretty chuffed (as I think the Australians would say).

Even better – it is not hiding behind a firewall and open access, which is rare for these types of journals.  Kudos to these progressive folks Down Under.

Ps:  I’m aware that I’m not Dr. Sue Robins.  I only have a BA in English.  This amusing error is being fixed – and a symptom of a journal that generally only publishes the work of physicians!

trolls can suck it

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suck it trolls

Last week, I had an essay published in the Globe & Mail’s Facts and Arguments about my time spent in Norway with my two young children.  I was so excited Wednesday morning when it was posted online that I forgot to heed my own advice about never reading the comments.  I read the first few comments.  This was a grave mistake and demolished any sort of initial joy I might have felt being about published in a major national newspaper.

Silly me.  Now, I’m not going to feed these trolls by talking about them or responding to them, except to say that it is rather amusing to see trolls crawling out from under rocks about an essay about Norway.  They can suck it.  What I do want to say to writers who are contemplating sharing their work for publication is this…

Do not be daunted by the trolls.  There will always be someone who feels that he/she must comment something contrary about whatever you write – even if it is the most positive, feel good piece you could ever image.  Ignore them, and don’t give them the satisfaction of the attention by responding to them.  In fact, don’t bother reading the comments at all.  The days of civilized conversation on the Internet are long gone.  (But if I think of it, I can remember being on a listserv about attachment parenting with a group of moms 20 years ago, and unsubscribing after being engulfed in what we termed back then as a ‘flame war’ – badly behaved people have always existed on the Internet.  And in real life too).

Ignore all that crap.  Keep writing.  Persist in telling your stories.  This makes you vulnerable, yes, but it also opens you up to some beautiful people, like Emilie, who took the time to comment on my blog:

Heres’s a good comment to read – your piece made me melt. Well done and thank you for sharing your past pain and healing with strangers. Keep writing!

Emilie is the person you are writing for.  Keep the her in your heart and banish the trolls to the remote mountains of Norway, where they belong.  As someone once wise told me:  if you don’t play the game (of engaging with any asshole in life), you can’t ever lose.  So no need to jump to my defence – I’ve checked out of the comment reading game.  Oblivion is bliss.

Ps:  for a much more thoughtful essay about trolls, read Stephanie Wittels Wachs’ super piece in Vox called My brother died of a heroin overdose.  Internet trolls wouldn’t let us grieve.