the grace period

good-vibesI woke up at 4:45 am. The cat heard me rustling and started meowing outside our bedroom door. I have to figure out a way to stay calm. I have the doctor’s appointment at 10 and then nothing so maybe I will go to the dog beach. I’m trying write this on my blog and just post it but I don’t know what to say.

I guess I’ll start here.

I write about disability, motherhood, inclusion and patient & family centred care. Most of my work is drawn from my experiences being the mom to Aaron, who is 13 years old and has Down syndrome.

Now it is my turn. Here’s where family centred care turns into patient centred care. On Monday, I was diagnosed with Invasive Ductal Carcinoma (IDC). I didn’t know what that meant either. It is breast cancer (carcinoma) that started in my milk ducts (ductal) but has spread elsewhere (invasive).

The past three months have been a a diagnostic gong show of delays and fuck ups (thanks British Columbia health system).  I termed this my grace period – the time before everything changes.  But I’ve since realized that all of life between when we are born and when we die is actually a grace period too.

I was numb with shock after the call from my doctor with my pathology results. I’d like go back to feeling comfortably numb, but the shock is slowly starting to peel away like a crusty bandaid, exposing something horrible underneath.

Telling people has been hard. This is especially true for my children – my two adult kids – my beautiful, gentle girl and my tough musician son -and my one teenager with an intellectual disability. I never know how much he understands but it is always more than I can ever know.

I had an important conversation with a friend who generously picked up the phone immediately after he received my email. He shared his wisdom from his family’s own recent experience.

  1. Only surround yourself with people who support you.
  2. Tell everybody who will listen. People want to be involved in some way. Don’t travel this journey alone.
  3. Approach this with positivity. You can choose to be miserable or you can choose to be positive. Choose positivity. You have to endure.

This blog is my version of telling everybody who will listen. Forgive me if I don’t call you back or respond to emails. I’ve read your words and I’ve heard your voice, and for that I am grateful. I’m sorry if I didn’t tell you myself – the telling is hard. I’m not happy to have a new well of writing material to draw upon. No, I didn’t need more street cred in the area of patient and family centred care. But I am a writer and I share stories that are important to me, and writing does helps me make sense of random events. I know that telling my story will help me heal.

Since November, I have seen many health professionals. I choose to only remember the kindnesses. Like the mammography tech at BC Women’s who stroked my arm when I was administered the sharp freezing for my biopsy. (News flash: needles in your boob when you are imprisoned in a mammogram machine really hurt). She also brushed my hair away from my face when it fell into my eyes, causing instant tears to well up in my eyes and slowly drip onto the hospital blue pillow.

My sweet family doctor is a treasure. She called me late one afternoon when I was driving back from my appointment with my terse surgical oncologist. She said: “I just called to see how you are doing.”  She’s the only clinician so far who has taken the time to ask how I was feeling.  I am so thankful for her.

I have surgery booked in a week and then a year’s worth of chemotherapy and radiation treatment. This is the long haul and I’m scared. I’m wearing fear like a heavy cloak – it permeates everywhere.  Most of all, I hate that I’ve hurt the people I love.

Here’s to more simple acts of kindnesses. Here’s to those who took the time to pick up the phone.  Here’s to being open to new people appearing in my life. Here’s to forgiving the people who have already said stupid things. (I’m really busy, but I’ll try to rearrange my schedule if you really need help. Um, thanks?). Here’s to finding humour in the dark.  Here’s to character building (I guess I haven’t had enough). Here’s to comfort for my husband and my children. Here’s to resiliency.

And here’s to grace, too.  I don’t have it right now, but I hope to discover it along the way.

the longest goodbye

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Friday was my last day of work as Sunny Hill Children’s Health Centre’s Family Engagement Advisor.  I’ve been in the odd position of saying goodbye since the beginning of July when I first went on a leave of absence from my position.

I wouldn’t recommend giving four months’ notice for a job.  This has been like pulling a bandaid off veeeeerrrry slowly, as I didn’t want to leave.  I loved my job.  My quest for a flexible work environment has led me back to being home-based – within the confines of our condo, nobody cares what days of the week I work, just as long as I get the work done. So it is back to the freelancing life for me.

Resigning when you don’t want to is a weird thing.  I didn’t get fired nor did I resign because I was unhappy with my job and heading to another position.  Instead I left based on a tale of woe  – the end result was a sad Sue.

I hope I left well, as the leaving really is the hardest part.  All last week there were celebrations:  a managers’ breakfast, a roundtable where folks shared what they had learned working with me – interesting, a common theme was how the managers now approach family ‘complaints’ – reframing complaints as constructive feedback to improve the quality of care and service – that pleased me.

Later in the week, I was treated to lunch at my favourite restaurant and on my last day, I hosted cake and coffee in my office, was gifted a huge bouquet of autumn flowers, and very specially – received a beautiful painting from the nursing unit of children’s hands done by the young patients there.  I felt very loved.

A very diverse group of folks popped in and out of my office on Friday for a hug and piece of cake:  administrative support staff, booking clerks, therapists, managers and physicians.  My best hug was in the hall from one of the kindest, wittiest person I know – David, the gentleman who is the maintenance man at the hospital.  This variety of staff validated my approach at work, and in life.  Everybody matters.  Everybody influences the patient and family experience in a hospital.  Every single person working in a health setting should be considered a health professional – not just the clinicians – and deserves to be treated with the same respect and dignity that we ask for as patients and families.  That love needs to be spread everywhere, all the time, to change the culture in a hospital.

Thank you to my Sunny Hill friends for the beautiful send off.  Thank you to those in my online community who have expressed care and concern for me and our son over the past four months.  We will be fine.  Having me be home-based and more available for him has helped so far.  I’m resourceful – picking up writing, consulting and speaking gigs as I go along.  I’ll miss belonging to an organization, a steady paycheque (!) and the built in social connections that go along with that.  Being a freelancer offers lots of freedom, but it can offer up loneliness, too.  I learned so much about staff engagement at Sunny Hill, lessons that I will keep close to my heart as I move on.  As I like to say, patient and family engagement and storytelling is my life’s work, whether I do it inside a hospital or not.  I am proud of the family engagement work that’s been done at Sunny Hill over the last year and a half, and I know that the new Advisor will be in good hands.

Most importantly, it was an honour to have been invited to catch a glimpse into the complicated, beautiful lives of families who have children who are served by this pediatric rehab centre. May they continue to find the strength to use their voices and to share their stories to make the world of health care a better place, and may all the health professionals at Sunny Hill continue to create opportunities for the listening.

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).

the mama bear

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A wise physician once told me that she teaches medical students anger directed at you is often fear instead.  I think understanding what lurks behind anger is key to working with families.  Well, key to working with anyone actually.

I was in a meeting at work this week when my cell buzzed with a call.  Twice.  I left the room to answer the phone.

I missed the call and listened to the voice mail. It was my son’s school phoning.  There had been an ‘incident’ at the school, and no he wasn’t hurt, nobody was hurt, but could I call back.  I looked at the time.  It was 25 minutes until dismissal and my husband was due to pick him up.

Here’s what I felt deep inside in quick succession: a flush of shame, a touch of annoyance, followed by a slow burning rumble of rage.  The shame of getting a call from the principal.  The annoyance of being pulled out of a meeting, assumption to call ‘mom’ first, when they know damn well my husband works from home and the dismissal bell was about to ring.  I called my husband and asked him to head to the school early, and went back to the meeting, my face flushed and my heart rattled.

After finding out the details, I felt agitated at the escalation of an event that the school termed an ‘incident’ that I would call ’12 year old boy mischief.’  This agitation mixed with the shame and annoyance very quickly devolved into anger.  I carried around this anger – which felt like a suitcase full of rocks – well into the evening.  I went to bed early at 9 pm to try to rid myself of the day.  Two days later, I can feel the residual of this rage.  It feels like a bad hangover.

If I pause to unpack that suitcase full of angry rocks, I find something interesting.  Buried deep inside that suitcase is shame.  The shame of being a bad mom for having a kid who is sitting in the principal’s office.  The shame mixed with guilt about being at work (maybe if I was at home, he’d wouldn’t ‘misbehave?’).  The shame about not being able to magically and telepathically control the behaviour of my child while he was at school.

All I could do when I got home was to hug my son and tell him I loved him even when he made mistakes.  Even when other people were angry at him.  I told him that I made mistakes too.  I told him tomorrow was another day.  His eyes were downcast, his mouth was etched into a frown and I knew he felt the shame too.  This made me even more angry.

This is where the Mama Bear is born – from this suitcase full of anger.  So educators & health professionals, the next time you encounter an ‘complaining’ dad, a ‘hysterical’ mom, a ‘crazy’ parent, a ‘difficult’ caregiver, stop before you label them. Recognize that this anger comes from a biological need to protect our loved ones.  Underneath that is sometimes shame, fear and hurt.  (Well, sometimes we are just MAD.  AT YOU.  But that’s another blog post).

I’d suggest taking the time to pause and try to understand the meaning behind the anger, to garner some empathy in your heart and then to demonstrate some compassion.  Try not to label, blame, finger-point or counter-punch with anger back at us.  Poking an angry Mama Bear in the eye with a stick absolutely does not help.  Instead, a little bit of kindness will go a long long way.  The most important thing to consider is:  how might I feel if it was me?

when breath becomes air

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A long time ago, I used to write book reviews for the Winnipeg Free Press.  This is not a book review.  (If you’d like a good review of this book, click here).

Instead, this is my attempt at deconstructing the reasons I sobbed so hard last night when I read the last chapter of When Breath Becomes Air by Paul Kalanithi.

The book’s premise is well documented, so I’m not sharing any spoilers here.  A respected neurosurgery resident is diagnosed with lung cancer.  Eventually, he dies.  In between the diagnosis and the dying, he lives.  He continues his neurosurgery practice, has a baby with his wife and writes this beautiful book.  His wife Lucy pens the last chapter, which is the point at which I cried uncontrollably last night lying in bed, in the cloak of darkness, with my own husband sleeping by my side.

It took me two days to read this book, as I consumed it in two furious sessions.  This book is about answering a calling to go into health care.  It is about epiphanies mid-residency about the humanity of health care.  It is a conversation about what is the value of a life.  It is about facing death, not unafraid, but with one’s eyes wide open.  This book is mostly about living while one is dying.  And it is a bittersweet reminder that we are all dying, my friends.  Paul’s wife, Lucy, said it best:

Although these last few years have been wrenching and difficult – sometimes almost impossible – they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude.

I’ve marked up my own copy of this book, and plan to reference it when I speak to medical students in February about the experience of having a child with a disability, which also includes the common experiences of grief, humanity and gratitude.  I want to pass all Paul’s wisdom on.

My hope for this little book is that it becomes required reading for all health professional students, similar to The Spirit Catches You.  Dr. Paul Kalanithi then will live on and on through his words, through the students he inspires, through the patients he saved, through his own daughter and through this expression of his love.

 

 

 

 

do unto others

The topic of patient and family engagement is HOT right now.

When I started this work ten years ago, the idea of involving patients and families at the organizational level in hospitals was new in Canada.  A rare children’s hospital might have a Family Council, but that was about it.  Now hospitals and researchers have awoken to the idea of talking to the people who they care for and serve.

This super infographic about Family Engagement was co-written with Karen Copeland, a family leader in the child mental health realm, and founder of Champions for Community Wellness. It is a solid summary for staff of what meaningful engagement looks like to families.

Last night, I had the honour of attending Isabel Jordan’s talk about Patient Engagement at Evening Rounds in downtown Vancouver. As the mom of a child with a rare disease, Isabel had many great suggestions about meaningful engagement of patients and families. Her wisdom included suggestions about involving patients in conferences (via the Patients Included movement) and closing the circle after engagements. She emphasized that patient engagement is really about treating people with respect. Plain and simple.

Last Sunday, the afternoon of the Canadian Family Advisory Network was spent talking about engaging families in pediatric research initiatives.  This means involving families early on in the research, and shifting the mentality from families/children being research subjects to being research partners.

This is a change in doing things TO or FOR patients & families to doing things WITH them.

I think this movement starts at the bedside or point of care, and with acknowledging that patients and families bring their own expertise to health care settings.  This means shedding the hierarchies that are rampant in health care, and for staff and physicians to stop hiding behind their professionalism and graduate degrees and to simply be human beings, plain & simple.

It means treating people as you want to be treated yourself.  It is about human connection.  It is about person to person relationships.  And this starts with listening.

Listening to each other’s stories without rushing, without judgment, without defensiveness, and without assumptions.  It is challenging work to be respectful listeners, because it means we have to examine our own values and understand where our own biases come from.  It is only then we can really listen to patients and families and work with them as true, equal partners in care.

If this sounds too soft, here’s a more practical article that was published in the Health Issues Journal in Australia called:  Meaningful Engagement or Tokenism.  Here, I open with a story about what tokenism in engagement looks like.  Then, I move onto practical solutions that includes ideas about:  scheduling meetings, preparing patients/families, welcoming people, flattening hierarchies, creative outreach and feedback loops.

Engagement is really about treating people like human beings – with respect & dignity and as equals to you.  There is no magic or secret sauce here.  Patient and family engagement is about doing unto others as you would have them do unto you.

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?