leaning out

This essay was first published on January 19, 2017.  It is worth a repeat because Dr. Yona Lunsky recently asked me for a few words about having a kid with a disability for a talk she did this weekend for the Down Syndrome Research Foundation conference.  I scratched out a few thoughts for her and will follow up with another post, specifically about moms’ mental health.   But first, this… 

Leaning Out

…or the work-life balance and how I’m totally faking it all the time.

I’ve never struggled this much to prepare a presentation.  I was asked to speak to the Rare Disease Foundation‘s parent support group in Vancouver on the topic of work-life balance.  I pulled some quotes.  Wrote speaking notes.  Created some questions.  The presentation was last night and still I floundered.  I have no definitive solution to how to achieve work-life balance, especially if you have a kid with a disability, like I do.

How do you balance work and life?  I have no freakin’ idea.  I didn’t know how to do it when I had two typically-developing kids in the 1990’s, and I most certainly don’t know how to do it now, with my remaining complicated kid in my nest.

I called my talk Leaning Out to temper Facebook COO Sheryl Sandberg’s book, Leaning In.  Her book is described as ‘compelling women to reach their full potential at work.’ Well, in November, I had to resign from my job because I couldn’t figure out how to be available to my kid and to keep working in a staff position.  So I’ve leaned out.  Way out.

I used to believe that you can have it all, but not all at the same time.  My youngest son has taught me that having it all is overrated – what is this ‘all’ anyhow?  A big house, full-time job, annual tropical vacations?  I think we’ve been sold a big fat lie about what’s really important in life.

My talk was a jumble of what I’ve learned over the past 23 years of motherhood.  In the paid work world, I’ve worked full-time, part-time, on contract and as a freelancer.  Other times I’ve immersed myself in unpaid work.  Some days I fill with grocery shopping and sitting on a log, watching the dogs at Kitsilano dog beach.  In leaning out, I’ve been humbled about how much I don’t know.  It was so easy to adopt an identity when I had a job – it was handed to me in a position description. Now, I’m making it up as I go along.

Here is some inspiration that I lean on instead to find my way.  As Ian Brown says, having a kid with a disability means recalibrating all the time.   Most of this is not in your control. In redefining my own identity, these three philosophies help.

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1. Reject the Perfect
Brene Brown describes this best in her TEDTalk, The Power of Vulnerability. She says, “imperfections are not inadequacies; they are reminders that we’re all in this together.” We must stop pretending everything is okay all the time and allow ourselves to be vulnerable.  To do this, we have to find safe places to let our guards down to stop being ‘special needs mom’ cheerleaders – like with other moms over coffee or Facebook and in support groups like one I spoke to last night.  It is so important to find people who demonstrate that they’ve got your back, no matter what.  (That, and never clean your house before another mom comes over – this sets a really bad precedent).

 

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2.  Embrace the Slow 
Having a kid with a difference forces you to get off the ‘regular person’ treadmill of life.  Life is busy, yes, but in a different way.  You get transported to a different planet that you never bought a ticket to – one with great frustrations with hospitals, society, social services and education systems.  There are times of great slowness – while helping a child get dressed, or waiting for a whole sentence to come out, or summoning all your patience for a kid to finish their meal.  In these slow times, it is so important to embrace the small joy, as Lisa Bonchek Adams gently reminded us.

I’m also fond of this New York Times Essay by Tim Kreider called The Busy Trap.  In it, he says, “busyness serves as a kind of existential reassurance, a hedge against emptiness; obviously your life cannot possibly be silly or trivial or meaningless if you are so busy, completely booked, in demand every hour of the day”.  Carl Honore’s In Praise of Slow book and movement also offers similar sage guidance.

 

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3.  Remember that unpaid work is work too.
Finally, I suggested banning the words ‘just a mom’ and ‘volunteering’ from your vocabulary.  Work is work is work.  We focus so much on what we do and how we do it, we forget about the why, as Simon Sinek reminds us.  Caring for another vulnerable human being is the most important work there is.  It is what makes our world go round. Our society doesn’t value unpaid work, but that doesn’t mean that we shouldn’t value work that doesn’t come with a paycheque.  Think about writing a Mom Resume that outlines all the skills you’ve acquired since your child was born.  Writing it down gives it power and makes it real.

But sadly for last night’s audience, I had no real wisdom, no solutions, no fixes, no way to achieve this elusive work-life balance. I mostly talked out of my butt, and used other people’s words as inspiration.  I was pleased to spark conversation, and it was heartening that others felt safe enough to open up about their own struggles.

Accept that recalibrating is okay and to be expected.  Talk about your imperfect life in safe spaces.  And value the work you do, even if others don’t.  As I seek acceptance of my current messy life so I can find peace in my heart, I hope you can too – in your own way and in your own time. xo.

the day i sobbed at the bakery

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I stopped by Gabi & Jules bakery yesterday to pick up an almond croissant and a maple pecan pie. By the end of my transaction, I was sobbing at the front counter, barely able to eke out any words, my face hot and embarrassed by my unexpected show of emotion.

Before the crying, I was perfectly composed and waiting in line to order my baked goods. There was a young man in front of me. I could tell he wanted to chat, so I turned and faced him and smiled. ‘All the food here is good!’ he said. ‘Have you tried everything?’ I asked. ‘YES!,’ he said, bursting to tell me.  ‘I work here! In the back.’

Now I could feel the tears beginning to well up. I swallowed them back as we chatted a bit more.   This young man had some sort of disability – autism maybe – but that doesn’t really matter. He was obviously very proud that he worked in the bakery.

Being employed is so much more than just a pay-cheque – it can offer a sense of value, worth and belonging.   This particular bakery in Port Moody is well known for its inclusive hiring practices. (Here’s a video and article explaining their philosophy).

After the young man left, I mentioned to the nice woman working behind the counter (Sarah, the manager) that my husband recently heard owner Lisa Beecroft speak at a panel for inclusive employment. I kept it together until this point, until I confessed, ‘Our son is 14 and he has Down syndrome. I hope one day an employer like you will give him a chance.’ Then my voice caught and the tears started to seep out. I managed to finish up before fleeing to my car, but not before Sarah said: ‘Bring your son in one day so he can look around!’ This made me cry even more. I’m sure she thought I was odd (and admittedly I am, especially since the dumb cancer, which seems to have broken me open emotionally).

When Aaron was born, I was clouded in many fears for his life: that he wouldn’t find love or belonging or friends or meaningful work. To be truthful, we are still working on helping him with his search for many of these things. I feel hope in my heart for the future with companies like Gabi & Jules taking a chance on all different kinds of people.

I started going to Gabi & Jules because I heard they hired people with disabilities and I wanted to support them. But now I’m a regular there because the baking is just so damn good. (The hazelnut tarts! The granola! And oh the pies). And now that I’ve met one of the bakers in the back, I have a strong sense, as their logo says, the maple pecan pie we ate last night was made with love.

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*Coming up next week! A special guest blog post from my husband, Mike Waddingham, talking about inclusive employment practices.

shed your parkas + titles at the door

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The Stollery Family Centred Care Council had its first meeting in October eight years ago. Soon after the holidays were approaching, so we decided to have a Christmas party. Hosting a party with this newly formed group of people seemed like a natural thing to do.

It was wholly unofficial, but in cahoots with Heather, the Family Centred Care Manager, we went ahead and did it. In the early days, we embraced a just do it and apologize later philosophy. We were pioneers in a new land.

We had no budget and we couldn’t serve alcohol in a hospital setting (of course), so my husband and I decided to host at our house.

We sent out invitations to the entire Council – senior leadership, family reps, physicians, clinicians – stressing that this was a family party – partners and kids were welcomed. We made it potluck to cut down on expenses and I think I had a jar at the door for folks to donate to our booze fund. Heather and I wrote out personalized Christmas cards for everyone. I bought sequinned Santa hats from the dollar store for all the kids. I don’t know how much all this cost. There was no funding and it didn’t matter.

As is typical for a December evening in Edmonton, it had snowed and the roads were icy and awful. But our doorbell kept ringing and boots and parkas piled up in our entrance as more and more guests arrived.

Here’s what I remember: Serving cocktails on a silver platter at the front door. Children running wild through our house: kids jumping on beds, kids running up and down the stairs, kids pulling out all my son’s toys (Note: this was all awesome).

The Senior Operating Officer of the hospital was there – her newly-retired husband had cooked an amazing dish for potluck while she was at work and he had braved the roads to meet up with her at our place. Another senior director came with her two children and husband. Her kids were playing with the so-called ‘Stollery kids’ – our kids, the patients – who were a diverse lot, a collection of children with disabilities and medical conditions. Seeing them all zooming around our house – at varying speeds, with various mobility issues – was as it should be.

My husband standing in our kitchen, deep in conversation with a dad whose child had died at the hospital the year before. Me, checking on kids downstairs, standing in the doorway of the bathroom, talking to a PICU intensivist while his young daughters ran amuck around us. A neonatologist popped by on his way from his martial arts class, leaning against the wall in the hallway chatting with a mom. It was a houseful of people connecting with people as human beings.

My husband and I hosted this party like every other party we had ever had at our house. Our formula was a bounty of food, fancy cocktails, blaring music and an open door. For whatever reason, people showed up. I understand now how important the simply showing up is. The people who came to that party were providing evidence of their early commitment to the family centred care cause. For the staff, this was an unpaid, after-hours affair. For the families, this was the end of a long day. But they still showed up. I believe this evening was a tipping point. It was the beginning of culture change at the hospital.

There were Christmas parties like this for about three years. The amount of people involved in family centred care at the hospital expanded and outgrew a house party. The celebrations switched to summer barbecues at community halls instead, which was a natural progression of growth.

But those early holiday parties were special. They were intimate and inclusive affairs.   There was a complete shedding of roles those evenings. Titles were taken off along with the parkas and boots at the front door. There was a relaxing of tightly held positions with a cocktail or two. Meeting everybody’s partners and kids felt really important. By the end of that first dark December evening, we were no longer ‘professionals’ and ‘families.’ We were colleagues and blossoming friends.

If you are reading this and thinking that there’s no way a house party with your hospital staff and patients/families would ever happen, here’s my challenge to you.

If you really want to partner with the people you serve, you need to see them – and your staff – as people first. It is your job to remove all the barriers to create an environment where you would be able to host a party at your house. (YES AT YOUR HOUSE).

If this seems impossible, you have to take away the preconceived rigid notion of what it means to be a professional, ignore the policies and procedures forbidding socializing and fund the damn party out of your own pocket if you have to.

This is not a movement created around a boardroom table. Providing opportunities to lose your title and connect as human beings is the only way you actually seal this deal. Celebrating together – breaking bread, getting to know each other, toasting to the season – is a good way to start.

the secret sauce

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I often get asked how some health organizations are successful at meaningfully engaging patients while others treat patients as if they are expendable checkmarks on their to-do lists.

This weekend, I was reminded of the ingredients that make up the secret sauce for engagement.  I was invited to the Stollery Children’s Hospital for a reunion of the youth, families and staff who have been involved with their patient + family centred care movement.  I had worked there for four years as their Family Centred Care Consultant to help establish their Council and their Family Talks program.  (Of note, I moved to BC to do the same work and failed miserably here.  You can lead a horse to water, but you can’t make it drink).

This weekend, amongst my beloved former colleagues and friends, I had a great epiphany.  My lightbulb moment was this: I was struck by three value-based elements that are mandatory for any health organization or professional who aspires to put patients first.

1. Demonstrate integrity.

There must be an alignment of an organization’s professed values and their actual behaviour. If your mission statement says Patients First then the behaviour of your organization (through policies and processes) and the actions of your staff (this includes everyone – parking attendants to clinicians and Patient Engagement staff, especially Patient Engagement staff) must actually put patients first, every single time.

This means doing serious self-reflection on how you treat ALL patients and how you handle challenging feedback. You cannot roll your eyes at ‘difficult patients’ or ‘hysterical mothers’ or say that you are ‘babysitting families’. Or dismiss patient feedback or the stories you do not want to hear.

Also, the only people who can tell you if you are patient centred are the patients themselves. You cannot decide this for yourself so you can slap it all over your website like some sort of public relations exercise.

Integrity also means if you say you want to hear the patient’s voice, you have to make space for the uncomfortable stories and honour those who share them with you. Listen hard. Don’t turn away.  There is growth and learning in the discomfort.

2. Give up your power.

If you want to collaborate with patients in a meaningful way, you have to be willing to give up your power. While patients are exceedingly vulnerable in health care settings, we also aren’t stupid. At the bedside, you have to concede some of your control and do everything you can to minimize trauma and suffering. Plus, for God’s sakes, cease all practices that strip people of their dignity and stop treating patients like dumb rats.

If you want patients around your boardroom tables, then you have to actually make room for them at those tables and treat them as equals. That includes not pulling stunts like scheduling meetings last minute, having only one token patient and demanding that people volunteer their time.

When giving up your power, you also must admit that you can’t and don’t know everything. Believing you are the expert is the ultimate patient centred care killer. Put your ego aside.

3. Grant patients a voice 

Creating opportunities for patients to safely speak up and share their wisdom supports them to heal. It also helps them connect with one another to build their own communities and find belonging. Oppressing and dismissing stories or feedback harms patients. Ask yourself: do you want to heal or do you want to harm?

If you really want to put patients first, the first step is to sit down and be humble.

My heart was bursting at the reunion.  I felt like a proud grandma.  There are so many awesome families and staff who are now lighting the way.  Kudos to the Stollery for demonstrating leadership and integrity. Brava/bravo staff, youth and families: Heather, Christine, Karen, Michelle, Amanda, Sarah, Christie and so many others.  Put your head down and keep going. You are are the role models for this work in Canada, for both the pediatric and adult worlds.

Other centres? Pay close attention. They’ve set the bar high for you.

As Don Berwick says, take off your business suits and lab coats and join together with us patients and families.  In rigid health care systems, this demands an innovative mix of leadership, culture shift, behaviour change and alignment of stars.   If it isn’t uncomfortable, it isn’t disruptive and you aren’t growing.

Demonstrate integrity.  Give up your power.  Grant patients a voice.  That’s where the magic lives.

a gathering of kindness

australia

Catherine Crock + me at Brighton Beach  Melbourne 2012

One summer day five years ago I boarded a plane to Australia.  The entire trip took 33 hours – with bad weather, delays, missed connections and four flights.  I finally arrived at the Melbourne airport, bleary-eyed and having lost a day off my life. Dr. Catherine Crock was standing there waiting for me to take me to her home.

Catherine Crock is a mom, pediatrician, founder of the Australian Institute for Patient and Family Centred Care, the HUSH Foundation and the Gathering of Kindness.  She is a force and a rabble rouser – a whirlwind of energy, ideas and action.

I sat on the long flight to Australia, wide awake, crammed in a middle seat in economy class and quaking with fear.  I had never been so far from home.  I was going to present about Meaningful Patient Engagement at a Consumers Reforming Health Conference, which was hosted by the Health Issues Centre in Melbourne.  It took every ounce of my bravery to get on that plane.

Here is a story about what kindness looks like in real life.  I was covering my own costs to Australia, as I was talking only in a break-out session and was not a plenary speaker.  When my abstract was accepted six months previously,  my husband and I decided to cough up the thousands of dollars in airfare because the chance to speak in Australia was the opportunity of a lifetime. (Note:  If you don’t pay patient speakers, it is only us privileged speakers who are able attend).

Cath knew I was funding myself.  She offered that I stay with her and her family at their house in Melbourne to help with my costs.  I politely said in my Canadian way:  oh no, that’s too much!  But Cath countered in her welcoming Australian way and insisted.  This made me a bit nervous too.  I’d never been billeted with anybody before.

In the end, staying with Cath and her big family was the best thing part of my whole Australia experience.  I spent loads of time with her, soaking up her Cath-ness and travelling back and forth with her by public transit to the conference.  I met her five children and experienced the love in her full lively house.  I slept in the guest room at the back of her home where there was a kangaroo living outside my patio door.  Her family welcomed me, fed me and cared for me like I was one of their own.

The night before my presentation, I rehearsed in front of Cath and her husband Rod in their living room.  I was taking another risk and using what I call the Dick Hardt style of presenting.  I had 133 slides for 15 minutes of speaking.  (Yes, I flew to Australia to speak for 15 minutes).  Cath and Rod generously helped me polish my speaking notes.

Despite my jitters, my talk was well-received.  I was a foreigner with a weird accent and a strange way of presenting and this helped me stand out.  (Afterwards, I wrote an article called Meaningful Engagement or Tokenism about my talk for Australia’s Health Issues Journal).

Cath and I have kept in touch ever since.  I was supposed to visit her in Australia with my own family this past March.  She had kindly offered up her cottage for us to stay at. But then I got the damn cancer, so we had to cancel our trip, which was scheduled two weeks after my surgery.  This was so disappointing.

I have vowed to bring my husband and son to Australia in the next two years.  I want to attend the next Gathering of Kindness, which is an annual event organized by Cath and her colleagues.  This year’s event is on October 30 and is for health care professionals, artists and innovators.  The 2016 Gathering of Kindness is described as this:

The GOK 2016 invited 100 participants – actors, healthcare clinicians, artists, musicians and innovators to imagine that kindness, trust and respect were the fundamental components of the healthcare system, and that bullying was unacceptable. Collectively they proposed a better way forward. 

I can’t be there this year because I’m still healing from the damn cancer.  But this blog post is a very long preamble to say that I was pleased to support this important initiative by contributing an essay about kindness for the Gathering of Kindness blog.  I called it All the Warm Blankets.  Please read it and also check out the Gathering of Kindness site.  If you are someone who works in health care this will remind you that all your kindness matters, every single time.

Dr. Catherine Crock’s generous heart and fingerprints are all over my essay.  She works hard to bring compassion into health care settings, through her own actions and by leading initiatives like HUSH Foundation (which introduces healing music into waiting and treatment rooms in hospital environments) and the Gathering of Kindness.

I’ll never forget how Cath welcomed and cared for poor, scared, jet-lagged me five years ago.  We need more Dr. Catherine Crocks in this messed up, beautiful world.  She’s one of the great healers who is handing out warm blankets to everyone, everywhere she goes.  xo.

a portrait of the patient experience

I strongly believe that patients should tell their own damn stories, in whatever way makes sense to them.  Do you want to support someone who is suffering as a loved one or health professional?  Listen to their story, no matter how difficult it may be for you.

While I’m a word person, I’m fascinated by those who use other forms of art to share stories.  The Portrait of the Patient Experience is a TEDMED talk about the intersection between health and art.  Ted Meyer is a visual artist from Los Angeles who has created visual art, first from his own scars and then from the scars of others.  He facilitates discussion between artists with chronic diseases as the Artist in Residence at the University of Southern California’s Keck School of Medicine.  He does what I call The Important Work.

Here’s a favourite quote from his talk:  People always say – art should be about something until art is about something and then they don’t really want to look at it.

On a personal note, I shared the podium with Ted two years ago at Collaborating Across Borders, an interprofessional conference for health academics.   While I spoke about this, Ted impressed with his humour and creativity.  I knew he’d go far and that he did.

He says about patients:  Pre and post scar narratives are held together by their scars to give their life a new meaning.

I strongly believe that we can inspire, motivate and educate by sharing our stories in whatever form that makes sense to us.  Importantly, telling our stories also helps us to heal.

Arthur Frank references Judith Zaruches in his formative book The Wounded Storyteller,  Stories have to repair the damage has done to the ill person’s sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations.

There are many ways to tell your story: a private journal, the whispered word, poetry, visual art, music, dance – or any other artistic form.  Creativity is an expression of you.

For those supporting wounded storytellers, it might be difficult to look at these scars.  These scars remind us that we all have the capacity to be broken and vulnerable in some way.  It is a great gift to those of us who are suffering not to look away.

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There are so many secrets in the land of being a sick person – secrets associated with being that sick person and secrets in the health care world we are immersed in.  Now I’m no Oprah and I know nothing for sure.  But I do have a strong sense that the telling of these secrets will help set us free.