inked – the mom version

I’ve been carrying around a slip of paper in my wallet for months now.  It is a silhouette of three little birds in various stages of flight. These represent my three children:  my son in another country, living his life as a musician; my daughter the next province over, poised to start university next week; and my youngest son, who is on the brink of adolescence.

My hesitation to get a tattoo was a strange mixture of fear of pain coupled with the embarrassment of being an almost-50 year old mom wandering into a hip Vancouver tattoo shop.  Tired of excuses, I went in on Tuesday and finally just got it done.

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I was sitting at the end of a yoga class at work yesterday.  The instructor told a story of her 19 year old daughter at the dinner table.  Tears fell out of my eyes.  I have a 19 year old daughter, but she’s no longer regularly at my dinner table.

I felt sad for myself, but then I remembered my birds on my shoulder.  I breathed gently, and joined in the Namaste at the end of our session.  I bowed to the spirit of my daughter, the spirit of my wayward eldest son, and the spirit of my youngest son with an extra chromosome.  May those little birds perched on my shoulder remind me that it is ok to let them go.  It is only then they are free.

what happens at camp…

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Aaron suddenly knows how to play ping pong. When I asked, ‘where did you learn that?’ he shrugged and said ‘camp’.  This year, for the first time, my 12 year old kid, who happens to have Down syndrome, spent four days at an overnight camp called Zajac Ranch.  What happened over that week in July?  Other than his newfound ping pong skills and a certificate for winning the talent contest with his breakdancing routine, I have absolutely no idea.

Ah, the many mysteries of summer camp. What happens at camp stays at camp. And that’s the way it should be.

Aaron is embarking on his own Project Independence – separating from his parents, just as his older siblings did.  Summer camp was my first step at letting go.  My son arrived back home so proud of himself, so brimming with confidence – I do not want to damper his spirit by suffocating him with all my own anxieties about his safety and my identity.  Down syndrome or no Down syndrome, my main job now is to encourage Aaron to continue to spread his wings and fly.

My most challenging task as the mom of adult children was allowing myself to unravel from their lives so that they could be free.  Aaron’s extra chromosome adds an additional complexity…or does it?  Maybe that’s just an excuse for maternal over-protectiveness, for hanging on tightly to my third and final child so that my nest is never empty.  What if it isn’t about me – it is about him?  There’s so much to ponder and be mindful about parenting an adolescent child. I pause here and take a deep breath – the teenage years of mom-heartbreak have already begun.

the spirit catches you

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photo of Lia Lee by Anne Fadiman

I bought The Spirit Catches You and You Fall Down by Anne Fadiman based on this brilliant excerpt:

“…instead of inquiring about the physician’s skill or credentials, he asked, “Do you know someone who would care for me and love me?”

This one stunning statement, uttered by a man of Hmong descent, embodies my entire philosophy about what’s gone terribly wrong with our health system.

I devoured ‘The Spirit Catches You’ and immediately began recommending it to my health care friends – some because they ‘got it’ and it would validate their approach to caring for others, and others because they did not get it at all. I hoped for those who are philosophically misaligned with me that this book would be their epiphany to stop judging, eye rolling and labelling patients and their families whose values were not the same as their own.

The Spirit Catches You and You Fall Down is a call for understanding and compassion. It is a simply told story about a very complex situation (which is no easy feat in writing – I have deep respect for writer Anne Fadiman). A family, the Lees, of Hmong origin, arrive as refugees from South East Asia to California. They present at the local hospital with their young daughter named Lia, who is diagnosed with epilepsy. Great miscommunication between the family and the health providers ensues, and eventually Lia experiences brain damage. The family blames the doctors; the physicians blame the non-compliant parents. In the end it is the family who is correct. Lia’s well-meaning, highly educated physicians injure her with their woeful ignorance.

While some might write this off as a tale of a child’s acquired brain injury, this is really the story of a family’s unconditional love. It shares cautionary lessons that reflect poorly on the rigid close-hearted health professionals. Blame not the family nor the system, it is the health care providers who let this family down. The professionals neither care for nor love the family, and dismiss them as foreign, obstinate, non-compliant and plain stupid. This value-laden lens does not even begin to touch the complexities of this family and their culture. It is the highly educated ones who end up terribly wrong.

As Anne Fadiman says, “the Westerners’ knowledge was not a gift. It was coercion.” She says she stood in awe of Lia’s parents, Foua and Nao Kao, who “stood firm in the face of expert opinion.”

This book is so important on so many levels, and I’m heartened to hear it is required reading in some medical schools. It calmly points out the great inequities of our Western health system, where it is demanded that parents surrender all control of their child when they walk through the hospital doors. For those from the Hmong culture, they hold no class system, which means that, “nobody was more important than anybody else.” This disregard of physicians’ status infuriated most doctors, who were used to being at the top of their medical totem pole. This book also points out how people working in the health system immediately view difference as inferiority.

The only people who showed compassion towards the Lee family were the ones who paused to try to understand the ‘why’ behind the family’s actions. And if they could not understand the ‘why,’ they chose to simply accept the family instead.

This is a book about cultural humanity. My most illuminating take away is that medicine has its own very strong and inflexible culture that demands compliance from its patients based purely on its own perceived superiority. But what if the so-called experts aren’t the experts at all? What if it is patients and families who are the experts, and it is the professionals that are simply temporary lenders of knowledge?

There is a concluding passage that strikes me at a personal level, as it speaks to the value of difference.

While the health providers throw their hands up at Lia when she becomes permanently disabled, labelling her a ‘vegetable,’ the author disagrees. “How can I not say (Lia’s) life is not valuable when she means so much to the people around her? How can I say she has nothing to contribute when she’s altered my life with my family and my life as a writer?”

This is a transformational book. Maybe we’ve placed importance on all the wrong things – what if the solution to healing people is not knowledge and expertise – it is caring and love instead?

the art of listening

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Please hear what I’m not saying:  the art of listening in the clinical encounter is one of the most important articles that I’ve read in a long time.  It was written by Mary T. Shannon, a social worker, and was published in The Permanente in 2011, a medical journal with a focus on medicine and the humanities.  In the awesomeness that is Twitter, this article was recently tweeted by Isabel Jordan, founder of the Rare Disease Foundation, and before that, shared by Marie Ennis-O’Connor, a health blogger in Ireland. Twitter is my best curator of the Internet.

Please hear what I’m not saying has had a profound effect on me.  I’ve shared it widely with my colleagues in the health world.  It inspired me to buy the book The Spirit Catches You and You Fall Down by Anne Fadiman, which is actually a brilliant analysis of the vast cultural differences between patients & families and health professionals.  I’m planning on writing more about The Spirit Catches You, but in the meantime, here is an important quote about it in Shannon’s article:

“…the author tells the story of a Hmong patient who was being referred to a specialist for further treatment and, instead of inquiring about the physician’s skill or credentials, he asked, “Do you know someone who would care for me and love me?”

The article continues to eloquently express so many topics that are dear to me:  the hierarchies in the health system, the professionalism that clinicians hide behind, the breaking of trust between patients and clinicians, the deep-rooted need for compassion and the basic human desire to be listened to.  I can’t do this article justice – please just click on the link and read it for yourself.

There are so many pieces of Please hear what I’m not saying that speak deeply to me about the art of listening.  I’m struck with how many ‘complaints’ in the health system are not actually complaints at all.  Most times they are constructive feedback that is disguised as a ‘complaint’ – feedback that is actually valid suggestions that can be used to improve the quality of an experience in a hospital environment.  That is, if the ‘complaint’ is listened to by staff in a value-neutral way, with this positive lens:  complaints are not negative.  They are merely constructive feedback that staff can reflect upon to improve care and service.  There are always good reasons behind a ‘complaint.’

I’m more interested in that WHY behind a ‘complaint’.  The why often sits in pain or fear, and many times it stems from broken trust between the patient/family and a health professional.  This erosion of trust may have been due to an experience that even happened many years ago (sometimes beginning right when a diagnosis or news is disclosed and the journey in health care begins), but patients/families carry the burden of these experiences around with them.  It is up to every subsequent health professional to help to mend that broken relationship and build that trust again in health care in partnership with the patient & family.

What is almost universal, and hides in the subtlety of patient stories, is a theme of not feeling heard or listened to.  Please hear what I’m not saying validates my strong belief that the way to honour patients and families and to help them heal is to listen to their story in a respectful way – through active listening.  It is through this listening that health professionals can demonstrate they care and help mend that broken trust.  As Mary T. Shannon carefully points out, every person desires to be cared for and loved.  As I say, people will care for themselves if they themselves feel cared for.  This is a very powerful notion, and it sits at the very core of the care in health care.

holy hospital parking fees, batman

perhaps the best hospital room view in the world

                               perhaps the best hospital room view in the world

My husband was hospitalized for four days earlier this month.    It was then that I realized that my feelings about the Canadian health system oscillate wildly between extreme outrage to heartfelt gratitude.

I was shocked and outraged by the state of the Emergency Department waiting areas.  Two words:  War.  Zone.

I was grateful for the care once my husband finally accessed the inner sanctum of the Emergency.  I overheard many interactions between physicians and patients – and they were overwhelmingly kind and compassionate.

I was mildly outraged by the amount that I spent on parking at the hospitals over four days.  It was a grand total of:  $175.  Holy hospital parking fees, Batman.  Now, I can afford this outrageous cost.  But what of others who can’t?

I was so thankful for the physicians (and various residents, interns and medical students) who worked hard to figure out what was going on and then fixed my husband and sent him home.  We always knew what the plan was, what the next steps were – and this alleviated a lot of anxiety that is normally associated with uncertainty.  The communication by the docs there was outstanding.

As Anne Lamott says, there are only two prayers in the world:

Help me help me help me.
and
Thank you thank you thank you.

Thank you to the folks at Vancouver General Hospital for helping my husband when he was in need.

(But holy cow, can someone do something about the exorbitant parking rates?).

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.