shaking off the cobwebs

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GirlTrek – from the TED Conference Flickr Album  https://www.flickr.com/photos/tedconference/34147188051/in/album-72157683062343735

While I don’t have $8,500 to spend on a TED 2017 ticket, I did have $23 to see TED Cinema on Sunday.  This was a two hour summary of the highlights this previous week’s TED event, which was held in downtown Vancouver.   My head feels as if the vice wrapped around it has loosened a tiny bit, and I don’t think CANCERCANCERCANCER every minute of every day (just every second minute of every day).  Listening to big ideas about the future was a pleasant way to spend an afternoon.  Now that I’m assuming I will have a future, so I’m feeling much more hopeful than before, despite the state of our world (especially America).

Good stories either validate our own experiences or surprise us and teach us something new.  The highlights of TED 2017 offered up both.  I scribbled quotes in the dark in my little notebook.  Here’s what I want to remember:

  1.  The highlights were curated carefully.  They opened slowly, with a talk about Artificial Intelligence (AI), a subject that gives me the creeps.  I slumped in my chair, calculating it was going to be a long two hours.  Thankfully the speakers picked up the pace afterwards.
  2. The best presenters were the ones with the most PASSION and ENERGY, even if I didn’t know what they were talking about.  A young musician called Jack Conte won me over with his enthusiasm for his topic of content creation on digital media.  His premise was that artists should get paid (to which I say hell ya).  His topic was entirely about money, but it was the way he delivered it with his whole heart that made me sit up and listen.
  3. My favourite talk was by Vanessa Garrison and T. Morgan Dixon, who co-presented about GirlTrek – an innovative program that encourages African-American women to walk in their own neighbourhoods.  This simple concept spoke to me – walking is healthy, walking is social, walking helps us take back our communities.  Self-care is a revolutionary act, they said.  Grab a sister, rally your allies and find joy.   These two women were dynamo speakers – often on the brink of tears – their love for their work shone through.  I’m a believer.
  4. As a molecular biologist, Elizabeth Blackburn could not be more different than me.  But she caught my attention for her Nobel-winning work about how stress affects how long we live and her particular emphasis on women who are caregivers of children with disabilities.  Yes, no surprise, us moms hold a lot of stress that leads to dire health effects.  This was sad but validating.  She did offer up some solutions, as our approach to our lives can help temper this stress.  As Elizabeth said – stress reduces when we look at our lives as challenging instead of full of threats.  Also, meditation helps.  I concur.
  5. I continue to be intrigued by the simple but profound idea of annual guaranteed income.  I’ve paraphrased my favourite quote from Dutch historian Rutger Bregman’s talk:  “simply get rid of paternalistic bureaucrats.  They can hand over their salaries to people living in poverty.”  BOOM.  Note:  paternalistic bureaucrats are the reason for most of my own stress (see #4 above).
  6. I’m ashamed to say that I didn’t know Shah Rukh Khan, who is one of the most famous men on earth.  I know him now. He’s a self-professed ‘aging movie star’ – an actor in India.  He was eloquent and in possession of a cheeky humour.  His message was one that I preach, too – find a way to keep on shining to create a world based on dignity and compassion.
  7. David Millebrand’s talk about refugees was both timely and seeped in history.  He was one of many speakers who called for a stop to building walls in our world – both literally and figuratively.  He made a passionate plea for us to open our hearts and our countries to those fleeing terror.  Dude was a great storyteller too.
  8. I quote and reference Anne Lamott all the time.  She closed the TED Cinema highlights with 12 Things I Know for Sure, a bright contrast to the opening speaker.  It made me happy that Anne read from her cards and wasn’t polished and scripted.  It made her real.  I have read all her books and I know all her quotes.  She was funny and dare I say states(wo)man-like, imparting wisdom to the rapt audience.  She was the right brain bookend of a left brain event.  Anne spoke about writing, practicing radical self-care and shared that serenity of mind is a inside job.  She has always been my wise aunty – blunt yet amusing and always spot on.

I was disappointed that Atul Gawande didn’t make the highlights, as I so admired Being Mortal.  My husband perked up at Elon Musk’s interview – while I don’t like Mr. Musk’s political allies, I do admit that he makes me think:  what’s my big idea?  It might not be space travel or tunnels under L.A., but if I had one bold idea, what would it be?

It was good to escape for two hours in a darkened theatre to exercise my creaky mind.  I didn’t even think about my stupid cancer even once until I saw the light of day.  A respite, even brief, is always a good thing.

on one hand, the butterflies

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This quote from Maria Shriver is a reminder not to be afraid of being afraid. In fact, the most courageous people are afraid. If you are a patient and family speaker and you find yourself behind a podium, you will feel anxiety and that is ok. This means you are about to do something daring, something so great that so many other people are terrified of doing. You’ve overcome your fear to climb up onto the stage and that’s what really matters.

Brene Brown says, “if you fail, at least you will fail daring greatly.” In her book Daring Greatly, she deconstructs the great Teddy Roosevelt speech to point out that it is not the critic who counts, it is the (wo)man who has dared to enter the arena.

My son is a drummer in a punk rock band. He has played countless gigs in a mash-up of venues: basements, garages, clubs, halls and festivals. I once asked him: “aren’t you nervous before you go up on stage?” and he looked at me as if I had three heads.

“I’m not nervous, Mom,” he said slowly, so I could understand. “I’m excited to be playing.”

Ah. There are so many dichotomies with public speaking. This is true for all speakers, but especially true for patient and family speakers.  We have so much more skin in the game, because sharing personal stories from health care makes us so very vulnerable.

One on one hand, it is normal and even expected to be nervous. On the other hand, why label your feelings in a negative way? Instead of being anxious, why not reframe and rename these butterflies as excitement? I have no answer to this, as I continue to drive white-knuckled to speaking engagements while still accepting and even seeking out these same engagements.  On one hand, nerves give you energy, on the other hand, nerves make you nervous.

For patients and families sharing their stories, more dichotomies ensue:

On one hand, prepare thoroughly and on the other hand, don’t appear too scripted because you will come off as robotic.

On one hand, know your material well and don’t read your words, on the other hand, it is impossible to memorize 30 pages of speaking notes.

On one hand, showing emotion is good, but on the other hand, don’t burst into gasping, sobbing tears.

On one hand, connect with your audience using humour, but on the other hand, don’t stand up there and be a cheerleader.

One one hand, be self-deprecating to show humility, on the other hand, don’t be too apologetic.

On one hand, share negative stories, but on the other hand, do it constructively and don’t scold the audience.

On one hand, allow yourself to be vulnerable in the telling of your story, on the other hand, be respectful to all hecklers even if they are being total and complete jerks.

On one hand, your story is the most transformational element of many conferences, on the other hand, don’t you dare presume to ask for money for that speaking engagement.

On one hand, don’t be greedy and ask for too much money, on the other hand, don’t undervalue yourself.

On one hand, show passion, on the other hand, don’t come off as angry or hysterical, especially if you are a woman.

One one hand, tell the truth, on the other hand, don’t offend your audience.

On one hand, it is your message that’s most important, on the other hand, how and why you deliver that message is more important.

On one hand, the soft stuff is inspirational, on the other hand, where is the data?

On one hand, you can only speak on behalf of your own experience, on the other hand, try to speak on behalf of all patients.

On one hand, nobody cares how you look, on the other hand, don’t dress too casually (sign of not taking this seriously) or too formally (do you think you are better than those in the audience?).  Don’t wear jangly bracelets, stripes or big florals, or all black so you look like a floating head.

On one hand, don’t worry, your video will work, on the other hand, the technology guy isn’t answering his page.

On one hand, humans are not perfect, on the other hand, there will be a member of the audience counting all your ‘ums’.

On one hand, being a ‘mom’ is enough, on the other hand, play up any professional background you have to ensure credibility.

On one hand, not everybody will get your message, on the other hand, that guy asleep in the front row is disconcerting.

On one hand, is this worth all the stress and sweating, on the other hand, it is only through sharing our stories that we are going to change the world.

Bravo and brava to all those patients and families standing in front of a microphone to inspire positive change in health care (and also the education world).  I bow deeply and tip my hat to you – keep talking.  Keep grabbing that microphone.  Keep using your voice. Keep accepting those engagements.  Keep asking for a fee.  Keep asking if conferences are #patientsincluded. Keep feeling scared, but keep taking a deep breath and keep showing love for your audiences.  As Mary Pipher says, this is where the transformation begins.

what inclusion means to me

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I’ve been agonizing over preparing a presentation all week.  For creating a talk is like crafting a story – it is carefully pieced together to engage the audience early on, to create a safe space for listening, to allow them to feel.  This is trickier than you might think.  I say this from hard-fought experience of crashing and burning onstage – misreading your audience is the absolutely worst thing you can do when you are behind a podium.  I live in fear of it.  This is a hell of a way to make a living.

I was asked to speak to all the teachers at my son’s high school about What Inclusion Means to Me.  There would be about one hundred educators in the audience on their Pro-D day.  I sweated out my approach, talking to the teacher in the Access Program (Burnaby’s special ed) who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the provinces.  I was desperate to understand my audience, to not misstep, to represent other families well, for I had a lot of skin in the game.  This is the high school where Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to a teacher/parent audience on this same subject, almost three years ago in Alberta.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were travelling on a strong academic path.  One mom had angrily protested from the back of the room:  your kid is taking away from my kid’s teaching time!  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there really such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s great bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some wonderful quotes about our kids being brave, and presuming competence.  I remembered the young man, Ryan, who has autism and graduated with my daughter three years ago, and read that little essay.  Two local family leaders, Karen Copeland and Suzanne Perrault, helped me immensely with pep talks and information. I was very aware of not being self-serving – not only concerning myself with my own son’s experience, but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behaviour’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s Pro-D day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron – from when he was first diagnosed (the baby we expected was not the baby we got) to my struggles with my own fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974 (if you are going to have a stereotype, at least have an up-to-date stereotype).  I acknowledged the good work teachers do – how busy and exhausted they are too, and asked them to reflect on their why – why they chose teaching.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids from the Access Program in the school, no matter how simple:  learning the kids’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My goodness, as I write this out, I realized I covered a lot of ground.  I’d had better practice what I preach about presentations, and that is:  Identify your intention.  Pick three key messages.  Know thy audience.

My intention was to touch hearts to change minds.  My key messages were about the value of children with disabilities (the disabled do the work of love, says Ian Brown), expanding the definition of diversity to include different abilities, and to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in Burnaby based on the school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose teaching.  At the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one.   This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the exact same messages I share with health care audiences, as I’ve realized that these concepts are deeply universal.

In the end, for me, everything always circles back to Raymond Carver:

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Beloved on this earth.  That’s what I want for my children, for myself, and for you too.  xo.

make the space for the listening

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I’ve learned so much these past ten years in my work in patient and family centred care.  My lessons come from this funny learning loop: my naivety is shattered, I feel deeply humbled and then I recognize how much I don’t know.  Working in the world of pediatrics, the clinicians tell me how family centred they are, but then many families sadly shake their heads and tell me otherwise.  This is disheartening.

I’ve come to believe that the care is generally child-centred, but health professionals aren’t sure what the hell to do with these crabby, stressed, fearful families who come along with their sick children.  Us families are self-professed pains in the asses, as that is our primal job – to protect our children at all costs.

There’s so much talk and very little walk about truly involving patients and families, except by a few lonely champions.  This needs to change.  I believe that the core of all work in health care is compassion.  And compassion comes when you take the time to understand another person’s perspective.  And people share their perspectives, not through data (which is so loved by clinicians) but through stories.  Real people communicate by telling stories.

Nobody has time for stories at the bedside.  Bureaucrats create policies to limit access to programs. Wait lists never end. Once you are finally in the health system, people rush in and out of patient rooms at great speed. Technology takes over for the human touch. Efficiency is held up as king. The bottom line for administrators is costs, not care.  With the explosion of knowledge, health care is fractured into more and more specialty areas and people are categorized by a pecking order of diagnoses instead of by vulnerability or individualized need.

The antidote to all this mess is to make the time to slow down, sit on the edge of the bed, put your hand on the patient’s hand, look them in the eye, ask what matters to you and then sit back and listen.  Simply listen to understand, openly and without judgment.  As a wise physician friend told me, find out what keeps people up at night.  What is their hidden concern?  It is then, and only then, will the care in health care begin.

Listening can happen at both the bedside and at the organizational level, too. But nobody has time for patient stories in rounds or during meetings or at conferences either.  The deep irony is that it is the patients and families who know how to make health care better – you just have to give us a chance.  But you must make the space for the listening.

Yesterday I was given a great gift.  It was the gift of time with thirty pediatric residents.  One of my champions is a beloved pediatrician.  Her heart is fully with the children and families she cares for and serves.  There was a window in the schedule for these residents and she grabbed it – creating a rare half day teaching opportunity for families.  I was honoured that family leader and mama bear extraordinaire Isabel Jordan collaborated with me at the podium.  We talked about partnering with families and best practice in sharing the news/disclosing diagnosis.  The residents – who I’m sure were exhausted from the pace of their training – listened raptly to us moms standing at the front of the lecture room.  They were good sports to participate in our ice-breaker, they asked respectful questions throughout and then at the end, they graciously thanked us for our candor, our passion and our time.  Afterwards, amongst themselves, they talked about ways they could improve the hospital experience for families – by caring for their own hearts, revisiting how family centred family centred rounds actually are, and making more time in their frantic schedules to talk about disclosing diagnosis well.

I cannot how thankful I was for this time with these young clinicians.  I cannot express how impressed I was by the calibre of this new generation of physicians.  In the sanctity of that lecture hall, we were all just people, no longer ‘doctor’ and ‘mom’ – the residents, eager to make the world a better place than when they found it, recognizing our desperate need for improvement, and us moms shining the light to show them the way.

Health care and academic leaders, let your guard down and allow yourselves to be vulnerable enough to let patients and families into your hearts. Vow to never have another patient centred care conference (irony alert!) – or any conference – without patients fully involved.  Invite families to share stories at staff orientation.  Add us to the curriculum to teach health faculty students. We want to help you.  We are ready – just give us a chance.  It all comes down to this:  simply make the space for the listening.  (Bonus points if you actually make positive change based on what you hear). This listening space is the spot where the great transformation of health care will begin.

everything about us without us?

photo credit: David Hungate for Virginia Tech Carilion

photo credit: David Hungate at Virginia Tech Carilion

There’s a movement afoot called Patients Included, whose charter for health conference organizers includes ensuring patients are not excluded or exploited at health conferences.  This includes having patients on the organizing committees, patients presenting and attending the conference, offering subsidies for patient travel, accommodation & registration and modifications made for patients with disabilities.

Now this is interesting stuff.

A couple of years ago, I wrote a blog post called Who Speaks For Patients, Anyhow?  It included a handy table about the spectrum of engagement of patients at conferences.

Since then, I am grateful for having been asked to speak at a number of health conferences.  I have been thinking about why some conferences are patient-friendly, and why others are not.  (True story:  I had an abstract accepted at a conference with a theme of the patient experience, and I was told I had to pay $450 registration fee in order to show up and give my 30 minute talk.  Um, no thanks.  The only way patient speakers will be valued at conferences is if we start saying ‘no’ to these requests to volunteer.  It reminds me of writers writing for free.  Just don’t do it).

But here is how some health conferences ‘get it’ and include patients, the very people who they care for and serve, the very people who are the subject of their conferences.

There is one champion on the organizing committee who puts up their hand and asks:  why don’t we have a patient speaker?  If they are pooh-poohed, then they put their hand up again and ask the same question, persistently and politely.  Eventually this not-so-quiet lobbying pays off, and the organizers decide to try out a patient speaker. Maybe this is just on a panel or a breakout.  That’s ok; it is a start.  Maybe they take a big leap of faith and ask a patient to open their conference.

With the right speaker, the conference participants can be inspired.  The rest of the conference is grounded by the patient voice.  The participants are reminded why they are doing what they do, and this helps rekindle their passion in their profession.

Now, after I got the crap beat out of me after speaking at a conference, I was told that health professionals don’t come to conferences to hear patients – they need a break from patients because they hear them all day long.  That’s pretty sad.  These are perhaps the types of health conferences who should not be asking patients to be involved.

The smartest of health professionals know what they don’t know, and they understand the power of the patient voice at their conference.  For it reminds them of the humanity of health care, the heart of health care and the caring in health care.  Bravo to those champions with their arms raised at those organizing committee tables – this includes Jeff Whissell, Sharla King, Tara Hatch, Arden Barry, Laurene Black, Teresa Bateman, Frank Gavin and Karen Latoszek – amongst others.   I’ll bet if you try including patients in your conference, you will never ever turn back.

amazing grace

On the eve of the American election in 2008, I went down to DC and met up with my American friend, Melissa Steele, to volunteer for Obama in the fading days of his campaign.  I was very fortunate to be at the Washington Post party the night Obama won.  I will never forget the scene after the CNN commentators announced that Obama took Virginia, and was in effect the President of the United States of America.  There was a surge of people to get urgently out of the building, and we all spilled out into the streets.  There, people were laughing and dancing and crying.  We walked past a grocery store, where the employees were jumping up and down and knocking on the windows, eager to join the fray of the celebration.

I’ve watched Obama over the years struggle as President with the bureaucracy, politics and infighting in the government.  But although I don’t agree in all his decisions, I still believe in him and his message of change.  I also believe that he is one of the greatest storytellers ever.  He has this amazing talent to connect authentically with his audience through his words and actions.  I continue to be awed by his rare skill.

Yesterday, I watched the video of Obama delivering the eulogy at the funeral of Rev. Clementa C. Pinckney in Charleston, South Carolina.  Towards the end, he stops and hesitates.  Then he slowly starts singing Amazing Grace. This simple act brought me to tears.  I thought of of the people who died in the church, and the state of America regarding guns and race and hate, and it filled me with great sorrow.

Obama’s gentle gesture was to step outside his carefully prepared speaking notes to connect with his audience, and to reach out to them in the universal language of music.  It was beautiful and spontaneous.  I dearly hope that after he’s done his presidency he will have the freedom to return to inspiring and motivating people, through hope and belief, in changing this messed up beautiful world.

i take this as a sign

After I wrote about getting back up onto the horse, I flew to Edmonton for my next speaking engagement. I was thoroughly spooked after my last experience, and boarded the plane in a proper foul mood.

I had forgotten my headphones, and couldn’t watch television to pass the time.  I tried to sleep and I couldn’t.  I flipped on my Kindle, and started reading Brene Brown’s Daring Greatly.  In it, was the exact wisdom I needed, drawn from Theodore Roosevelt’s ‘Citizenship in a Republic’ speech of 1910, also known as ‘The Man in the Arena’.

man in the arenaIt is not the critic who counts, but the (wo)man who is actually in the arena.  Brene’s book is written around the premise that ‘If I fail, at least I fail while daring greatly.’  She says we will all get kicked down in the arena if we dare to live a courageous life.

I walked off that plane feeling a whole lot better.  My daughter Ella and her boyfriend Eisech were waiting to give me a hug at the airport.  They kindly drove me to my hotel.  I got my room key and took the elevator to the 7th floor.  The elevator doors opened, and I was treated to this:

IMG_7129After all my ‘climbing back onto that horse’ metaphors, I had apparently been assigned to a room on the ‘horse’ floor at Fantasyland Hotel.  I decided to take this as a sign.

I ordered mac ‘n cheese and cheesecake from room service.  I had a bath and drank some tea.  The next morning, Ella generously brought me a flat white from Starbucks.  We went for a lovely breakfast together.  Just before I went up to the conference room, a rather disheveled gentleman walked past me.  Rather than look away, I looked him in the eye and smiled.

Hello, he said.  How are you?
Good! I said.
Good! he said back.  He paused for a moment:  God bless you, he said.
Thank you, said I, and then he was gone.

And with that, I marched right back up behind that podium.  My girl Ella, who is heading into nursing this fall, was in the audience.  Seeing her there gave me great strength.  She and her gentle heart are the great hope for nursing’s future.

The audience at the Canadian Rehabilitation Nurses conference could not have been more engaged, interested and open-hearted.  At the end, the nurse who had introduced me said she couldn’t come up to say a proper thank you because she was crying too hard.  (Crying in a good way, thankfully).  It was such a privilege to thank nurses for the important work they do to help patients and families heal.  In the end, I did feel blessed.

I’m on the other side of being kicked down in the arena.  As Brene says, “to put our…ideas out the world with no assurance of acceptance – that’s vulnerability.”  For those of us championing a worthy cause, please keep climbing onto that horse and back into the arena.  The worst case scenario happened to me, and I survived.  And if it happens to you, you will too.  Don’t give up.  Take a little break and then keep going.