the radiation therapist & the patient

rumi

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

hospitalaaron

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

trolls

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

nordicbreakF1

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.

pay attention to where the suffering happens…

...for that is where the healing begins.

I felt very fortunate to attend Dr. Rita Charon’s lecture at the Vancouver Institute last night with two wonderful colleagues from my children’s hospital workplace.  Dr. Charon’s talk was entitled The Power of Narrative Medicine and it was a beautiful marriage of literature, art and medicine.

I hung onto every eloquent word she said.  It was as if Dr. Charon had heard me preach about active listening, storytelling and reflective practice over all these years, but then she took my simple thoughts and draped a complex intellectual layer over them.  Her lecture was very smart and I can’t stop thinking about what she said – I cannot recall being that mesmerized by a presentation before.

The premise of her lecture was this question:  how do we be totally present with another human being?  While I talk to medical students about simple things, like eye contact and not appearing rushed when they meet with patients, Dr. Charon goes even further by teaching health faculty students how to read and to listen to stories written in the literature so they understand how to pay attention and to recognize that every single word counts.  This human skill of careful attention can be applied to work with patients, who often crave one simple thing: to be heard and understood.

Once we understand how unified we are at the human lived experience, then our troubles (in health care) are over. 

She spoke about boundaries, and how the artificial borders we place between each other as ‘professionals’ and ‘patients’ are actually permeable.  She wondered what methods she could use so she did not have to be a stranger to her patients, and concluded that this can only happen when she was listening closely to patients with a mixture of curiosity and wonder.

Pay attention to where the suffering happens.  This is where the healing begins.

Dr. Charon spoke for just over an hour.  I could have listened to her forever.

I thought about my English degree and how I bring the ‘soft’ right-brained stuff into my scientific, technical work environment.  I’m often dismissed and misunderstood, but I keep my head down and continue on.  I don’t underestimate the influence of initiatives like new art on the walls, a book club, TED Talk showings and inspirational quotes that I tack onto the hospital bathroom walls. I’m interested in nudging my colleagues to think and feel in different ways.

The conversation on the way home with my two work friends (one a clinical librarian also with an English degree, and the other a leader with a graduate degree thesis in storytelling) was the most interesting.

We all wondered if the work of health care was meant to be purely embedded in math and sciences.  Isn’t caring for patients in itself an act of humanity, and not a function of  science?  

(Here’s a snippet of Dr. Rita Charon’s wisdom.  Take the time to watch it carefully.  She does not have a sound byte-like style of speaking – and that’s what was so refreshing about her talk last night.  You have to work to listen and understand her words – they will not be spoon fed to you.  It made me realize what a rare gift Dr. Rita Charon is in our rushed and frantic world).

my story, your story

sylvia plath

About eight years ago, on a news segment about peer support for families who have kids with disabilities, I talked about the grief that families feel when their child receives a diagnosis.  A journalist who had cerebral palsy took me to task, saying that I was against people with disabilities (!), and that by expressing the sorrow that comes with a diagnosis in the early days, I disrespected my son.  I felt great shame for feeling the way I felt, and for also expressing it in a public way.

I have conflicting feelings about this.  As a wise spiritual care leader at my work said – you have your story others have their own stories.  It is ok if these stories are not the same.  So I have my story about being Aaron’s mom, and yes, Aaron has his own story about being Aaron.   As he gets older, I hope to support him to tell his own story. (If he wants.  I also live in fear of becoming a stage mom).  When Aaron appears in my presentations, or even on my Facebook page, he is aware I am talking about him.  He helps me pick out his photos.  If he doesn’t want a particular picture used, I don’t.  Is he truly giving informed consent?  I guess that’s a controversial question for a kid with Down syndrome.  I trust that I explain what I am doing in a way that he understands, and that I give him a true opportunity to say ‘no’.

Since the fall of the website The Mighty, (see this Washington Post article for an explanation) I’ve been even more reluctant to write about Aaron.  There have been various edicts floating around the Internet that say that parents should not be writing about their kids with disabilities.  I’ll tread carefully here, as with any ethical issues, the answer isn’t black and white.

If you are a writer who writes about your experience having a child with a disability, I’m not going to tell you what you are allowed and not allowed to do.  This type of reflection is personal, and we all figure out this whole parenting thing in our own time.  Passing grand judgments on what everybody must do seems in itself judgmental to me.

Being aware, participating in regular reflection, and being open to listening to my kids is what I promise to do.  My eldest son asked that I not publish about him anymore, so I don’t.  I check with my other two kids before I share pictures or stories.  I try to express my own story (including feelings and reactions) as a mother without compromising my kids’ privacy or dignity.  Such is the delicate balance of figuring out what is my story and what is theirs. I don’t believe that shaming or muzzling people is the answer – surely there are more respectful ways to give people pause to think?  We all have our own answers about what’s the right thing to do, and our answers reside in our own hearts. You figure out your right answer, and I’ll figure out mine.