make space for the suffering

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The older I get, the more conflicted I feel about everything.  I hope feeling conflicted is in fact related to my growing sense of humility as I open up to other points of view.  The more I know, the more I know I don’t know.

I used to despise the word suffering, as it is misused all the time in reference to people with disabilities.  The horrific term ‘burden and suffering’ is often widely applied to human beings with differences, both before and after they are born.  I still call bullshit on this stereotyping of other human beings in order to categorize them as less human.

So I dismissed the word suffering outright until I was diagnosed with cancer last year.  It was then I felt the true meaning of suffering, as the past few months have been fraught with unresolved physical and emotional pain which was triggered by my cancer.  I continue to heal from that experience.

I encountered Carlyn Zwarenstein’s writing about pain a few months ago.  She invited me to look at the notion of suffering in her important book called Opium Eater, The New Confessions.   Opium Eater is a small but mighty book that examines the use of legal opioids to manage chronic pain, looking at the historical, economical and emotional aspects of alleviating pain. Carlyn deftly draws upon the literary world for understanding. Andrew Sullivan’s recent New York article The Poison We Pick also tackles the concept of pain.  He identifies pain as simmering underneath the terrible mounting opioid overdose deaths.  As he explains about opioids: It is a story of pain and the search for an end to it.

A year ago, I wouldn’t have comprehended the depths of such pain.  But today I have a glimmer of understanding.  While I am privileged enough to keep pain at bay with the occasional Ativan and regular therapy sessions, cancer has humbled me enough for me to glimpse at the great suffering in this messed up, beautiful world.

Part of my own healing has been writing.  A few months ago, I was asked by Dr. Janice Bell to write a guest editorial for the Journal of Family Nursing about my perspective on suffering.  It was published yesterday and is called Make Space for the Suffering.

I’m pleased that health care academic journals are starting to make space for the patient voice on their prestigious pages.  I believe the inclusion of the patient voice makes their pages even more prestigious (and legit).  This most recent editorial is a plea for health professionals not to turn away from patients’ and families’ pain.

I will continue to say over and over again – I’m a broken record – as I dare you, health professionals, families and friends, to draw upon compassion and not turn away from our pain:

Healers turn toward patients and families during their pain. A warm gesture, kind word, or gentle touch reminds us that we are not alone and makes space for our suffering. While health care can (sometimes) cure, it is love that will heal us in the end.

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 radiation therapist & the patient


I am super proud of this article I co-authored with Amanda Bolderston for the Journal of Medical Imagining and Radiation Sciences.  It is called The Radiation Therapist and The Patient:  Epiphanies, Stories and Social Media.

It covers a lot of ground:  relationships in health care, how ‘complaints’ are handled by organizations and the power of social media.  I’m particularly chuffed because Amanda and I wrote this together – a health professional and a patient. It proves my theory that if we endeavour to see each other as human beings, and not merely titles…well, that’s where the magic happens.

the hospital world according to aaron


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


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.


my great nordic breakdown


Illustration by Lindsay Campbell

Just for something completely different, here’s an essay that I had published in the Globe & Mail’s Facts and Arguments this morning – My Great Nordic Breakdown.

You know when you are at a meeting and they ask the ice-breaker question:   tell us something nobody knows about you?  Well, this is my answer to that question.  After my first marriage broke up, I lived in Norway for five months with my two eldest kids when they were 7 & 4 years old.  While I have a journal I kept during that time (buried deep in a box), I have never written about our odd adventure.

The writer background is this:  an editor of another prestigious newspaper was interested in the story, but when I submitted it, she said:  this isn’t a good fit.  So after a couple of days of feeling hurt by this, I dusted myself off and submitted it to the Globe.  Who accepted it.  There’s a great amount of rejection in this line of work.  But this is a good lesson in not giving up.

The Globe and Mail has been good to me.  This is my third Facts and Argument essay that I’ve had published, and I had another one accepted that I had to withdraw because of a long story that I can’t tell you.  So to all my writer friends out here:  try the Globe!  They don’t pay, but the byline is nice on your CV!   And they are friendly to mama writers.  An editor there once told me:  if it makes me laugh or cry, I’ll publish it.

ps:  Don’t read the online comments.  Never read the online comments.  I sadly forgot to take my own advice this morning.  Ugh.

precious cargo

I hotly anticipated the release of the new book by Craig Davidson called Precious Cargo. The sub-title is My year of driving the kids on school bus 3077, which sums up the premise of the book:  in desperation, struggling writer takes a job driving a special ed school bus in Calgary.  As a mom with a kid with special needs, I’m not super happy about the ‘in desperation’ part, but I do understand the writer’s need to set up dramatic tension as he begins his story.

I wanted Precious Cargo to provide a little crystal ball into my son’s life – being 13 and having Down syndrome, we’ve been told he’s eligible for the ‘special ed’ bus pick up and drop off next year – and that’s new for us.  I once heard a prominent researcher in the disability world give a talk on abuse and children with disabilities.  An audience member asked him, what’s the one piece of advice you’d give to parents to avoid abuse for their kids?  And he answered:  never ever put them on a school bus.  That scared the crap out of me.  Hence my extra-fascination with the premise of this book.

I also wanted to read Precious Cargo to gain some insight into the thoughts of a person who had never been exposed to kids with differences (e.g. the writer) – I wanted to see if he had any epiphanies about why the hell general ‘society’ shuns and excludes our children.

What I ended up getting from the book was this:  a hope that others who have never had experience with people with differences read this book.  Me reading this book is akin to preaching to the converted.  While it was interesting to ponder some points about inclusion (do kids want their own special ed bus?  Is inclusion about us and not them?) and to validate that the ‘wide berth’ given to people with disabilities is rooted in a very primal fear of difference:  it is 2016, yes, I know we haven’t evolved that much, particularly in regards to people with intellectual and/or visible differences.

For a richer analysis of Precious Cargo, listen to this wonderful CBC interview on The Current.  What stuck me about this interview was the immense respect that Anna Maria Tremonti offered to the panel participants and the subject matter of disability and stigma.  As always, Ian Brown knocked it out of the park with his thoughtful commentary (read his Globe and Mail review of Precious Cargo here).  I so appreciate the author Craig Davidson for introducing the stories of these young people on his bus to the broader world.  During the interview, I learned the most from Ing Wong-Ward, Associate Director, Centre for Independent Living in Toronto.  She spoke eloquently about us all being aware of always ‘calibrating our fears’ about people with differences.

Ing helped me realize that my world as the mother of a person with a disability is not the same as my son’s own world of living with a disability.  The older he gets, the more I’m working hard to unravel myself from him, to create environments where he can express his own feelings and make his own choices.  His story is his story.  My story is my story.  Craig Davidson’s story is his own story.  I believe there’s room in this world for all these stories.  

The more we talk about stigma and people with disabilities, the more we chip away at that stigma that has been built over the decades with the bricks of secrets and silence.  I truly hope that Precious Cargo becomes a best-seller, transcending the world of those who have a personal interest in ‘special needs’ like me.  I’ve often wondered whether having someone follow us around with a video camera as we go about our day-to-day life as a ‘special needs family’ would either terrify people or calm people down.  If nothing else, all these stories illuminate, and shine light on people and families who are just doing the best we can (just like you are) in this messed up, beautiful world.