I Wrote A Book

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The Late Great Audre Lorde

This is the story of my book. Bird’s Eye View is a collection of stories of my life lived in health care – from a failed nursing student, to a health care bureaucrat, to the mom of a child with a disability to a patient and family engagement consultant to a woman living with breast cancer.  It is written for patients + families and anybody who works in health care – clinicians, staff, health faculty students and administrators.  It is for anybody who has an inkling that stories can change the world.

I started writing this book two and a half years ago after I left my job at a children’s hospital.  I was in deep grief when I resigned, but everybody said to me:  Now you can work on your book!  So that’s what I did for three whole months.  Then BAM I got diagnosed with breast cancer.  That was kind of a bummer and shut down the book action for a very long time.

During those dark hours, I barely managed to keep a journal, but I am thankful I did.  I called my journal Grace Period although I was hardly graceful.  I was what Arthur Frank calls in The Wounded Storyteller a narrative wreck.

I finished treatment and waited out my narrative wreck.  You may have read some of my narrative wreck pieces here on my blog. I was so neck-deep in crisis and grief that I couldn’t continue the book.  Plus, the book was about kindness and compassion in health care and to be honest, as a cancer patient, I wasn’t being treated with much kindness or compassion in health care.

I put the book aside and took poetry classes, regularly visited my therapist, tried meditation, did some paid consulting work and went for many long walks.

A year and a half after I was diagnosed I could finally bear to look at the book again.  Since some time had passed, I started writing more reflective chapters about having cancer. I added them to the words I had already written about being the mom of a kid with a disability.  The caregiver had became the patient and this was hard stuff for me to reconcile.

In January I finished a manuscript, all 100,000 words of it.  I started shopping around for a publisher and received a number of rejections.  This was not unexpected but it sure was disheartening.  Some of the rejections were plain mean.  One Toronto publisher said: I passed your manuscript around to our editors and there was no enthusiasm for it.  Ouch.

After every rejection, I paused to lick my wounds.  The Toronto-publisher route was clearly not working well for me.  Then I was introduced to Hambone Publishing in Australia.

I’ll leave the Hambone story for another time.  It is a beautiful tale of serendipity and connection. I will say they are a perfect fit for me.  The manuscript is with my editor now and she is doing the hard work of a structural edit. 100,000 words is too long. I’m very pleased that I found a fabulous illustrator – she is a local Vancouver artist – for the book’s cover.

I’m going to do this book my way.  I’m committed to the Patients Included principles for events.  I will bring other caregivers and patients along with me on this ride.

Bird’s Eye View will be released in the fall of 2019.  If you would like to follow along with my book adventures, fill out the form here to get on my mailing list.  You can also follow @birdseyeviewbook on Instagram.

I’m doing the thing I’m most afraid of, and I’m both scared and excited all at the same time.  xo.

 

culture and care

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My husband was admitted to the hospital last week.   I have much to say about the system issues like bed utilization and the practice of hallway medicine.  But these problems are so big that I want to put my head down on the table in defeat whenever I think about them.

But the culture issues?  These are more in reach.

As the wife of a patient, I’ve been keeping vigil at bedside.  I can hear everything, for flimsy curtains in a four-person ward mask no sound.

The patient, who I love very much, has been bumped around the hospital from Emergency to the hallway to nursing unit to nursing unit.  The nursing units have offered up stark lessons in the differences in workplace culture.

On both units, the care has been competent.  Of course, the nurses are all educated and licensed, so nuts and bolts of assessment, medication administration, wound care, etc. have been similar.  The difference between the units is not what treatment has been done but how it has been administered.

On Unit A, my husband’s nurse introduced herself when she came on shift. If another nurse was covering for break, that nurse explained that when she came in. ‘I am here to take care of you,’ they all said by way of introduction.

I listened as my husband’s nurse chatted with the other patients as she went about her tasks.  She called the patient by name and lightly joked with them.  Even when I knew she was busy, she did not appear busy in the moment.  There was no edge of impatience to her voice.

All the nurses used the white board beside the bed to update the date and their names. This careful care was consistent shift after shift.  This was not the case of having one exceptional nurse.  This was the way this unit went about their business – with a smile and not a frown.

I could hear the nurses chatting about their days off in the hallway.  This gave me comfort that they liked each other and worked well as a team.  And that they did.  When a call bell went off, any available nurse would respond to it, even if it wasn’t their patient.  I was astounded at one point as four nurses responded to one call bell.  They often popped in to ask if their colleague needed help with what they were doing.  They said thank you to one another.

The nurses on this unit were, in a word, collegial.  They cared about each other so they could care for their patients.

I don’t know exactly how this happens.  So many factors come into play with workplace culture:  The nurse manager’s leadership style.  Hiring practices. Performance reviews. How mistakes are handled.  Whether staff see their jobs as a merely a job or as a calling.

My husband was moved after two days on Unit A.  I’m sad to report that Unit B had little of Unit A’s secret sauce.  Unit B was like opposite-land.  This was in the exact same hospital, so I can’t blame hospital leadership for this contrast.  The differences must have stemmed from the local level.

On Unit B, staff openly argued with each other at the nursing station.  There was rarely a smile. Staff came and went conducting their tasks in silence, without introduction.  There was no chit-chat with patients.  Two staff gossiped loudly about a patient in the hall.  Often times I was not even sure who my husband’s nurse even was.

I felt for these folks.  I knew the workplace culture was totally different here.  Everybody seemed unhappy.  Misery was a low-hanging cloud over the entire unit.

People scurried about with their head down, not making eye contact.  The corridors were crammed with so much equipment and garbage that you could barely squeeze by.  The sound of unanswered call bells echoed in the hallways.

While sometimes I despair that the emphasis on staff morale can overshadow patient-centred care, I fully acknowledge that positive staff engagement in their work is directly related to the patient experience.  Kind health care means that everybody must be kind to each other. This thread of kindness must run through all staff, physicians to unit clerks to housekeeping staff to porters to nurses. Full stop.

How could the patient and staff experience be so different in the exact same hospital, a few floors apart?  The answer is culture.  Staff culture eats patient care for breakfast.  Happy staff equals happy patients.  It’s as simple as that.


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here for you

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Here for You
-Stephanie Johnston

Mammographers know it’s not a fun scan – believe me – so we do everything we can to make you comfortable.

When I greet you, I look you in the eye and say, ‘You’re here for a mammogram,’ which might sound silly, but I don’t want there to be any confusion because confusion breeds fear.

I tell you everything that will happen.  I put my hand on your back as we walk into the room – I’m talking to you with my words, but also with my hands, my tone.

I make sure you’re covered until the second you are positioned on the machine.  Once the test is under way, I say things like, ‘You’re doing great’ and ‘Just a few more seconds.’  When I reposition you, curving my arm around you, pulling you, turning you, I say, ‘We’re doing the mammo dance!’

I ask, ‘How are you doing?’  If you say you’re okay, I ask, ‘Can I do something different?’

Sometimes – it’s happened twice in the last 20 years – the patient absolutely can’t bring herself to submit to the test, and then I say, ‘This just isn’t the day for you to come get a mammo.  You can come back another day.’

What I never do is leave you, whether physically or by sinking into my own thoughts, stewing about my bad day or my worries or all the things waiting for me back out in the world.  In that moment, you are all that matters.

Stephanie Johnston is the President Elect of the American Society of Radiologic Technologists, Wichita Falls, Texas.

 From Oprah Magazine, August 2019, page 97.

celebrating moms

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The beautiful women at my table.

Last Sunday, I attended a tea for moms who have children with Down syndrome. It was cleverly called Tea21moms. It was a lovely affair: held at a Fairmont Hotel with a high tea service of dainty sandwiches, pastries and of course tea. The service was gracious, the room was beautiful and there were generous door prizes and warm hosting by Tamara Taggart (herself a mom of a son with Down syndrome).

It was fun to get dressed up. I knew a few moms who have older kids, like me, and we sat together at a table. It was wonderful to catch up with them.

At the back of my mind, I felt a wee bit guilty at not having helped to organize the tea. It was the brainchild of Danielle and Tamara L, both moms of younger kids. Life is less hectic now that Aaron is 16 and his health is stable (knock wood) – why didn’t I think of hosting an event? Why didn’t I at least volunteer?

I expressed that I wanted to help, and Danielle gently said to me – we just want you to come and enjoy yourself. In the end, I managed to convince her to allow me to donate a door prize from our company. It was this gorgeous Mama Bear pendant from local Vancouver company Pyrrha Jewelry.

The poem that goes along with the pendant said this:
This talisman features a bear, a symbol of motherhood and childbearing. It represents ferocity in the protection of one’s family.

Every single mom in that room was a ferocious protector of their family.  To be truthful, it is really tiring to be a ferocious protector of one’s family.  Even real mama bears need to hibernate. As I wrote about a few days ago, we all need a rest from being brave and strong. This tea was a little rest for me.

In my last post I also talked about how hard I find it to let people take care of me. I looked around at the Tea21 room at the glowing faces of all the moms there. They were relaxed, not having to chase around kids or worry about anybody except for themselves two whole hours on a Sunday afternoon. I settled back and let myself be served and celebrated. This in itself was glorious.

We all deserve to be taken care of. We are all worthy of being pampered. Having a kid with a disability adds an extra layer of complexity to our lives as mothers. There are health concerns, therapies, IEPs, struggles with schools, friendships and belonging for both our children and ourselves. It can be a lot.

The tea was a way to recognize us and to let us know we were valued. What a gift that afternoon was to me. Thank you Tamara and Danielle for your vision and hard work. Creating a space for moms to connect is brilliant. We all need each other, more than we even know. The ‘system’ might call this peer support, but I simply call this a gathering of friends who happen to be woven together by a precious third copy of the 21st chromosome.

(This type of celebration of moms does not have to be restricted to moms of kids with Down syndrome!  Please be in touch with me if you are interested in how to organize a tea for your own community and I will connect you up).

the armour of the brave + strong

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My blurry little family in Norway, circa 2001

I was a single mom for a spell 19 years ago.  Despite (or because of?  I’m never sure) the trauma from losing my marriage, my house and even my car, I became fierce.  On principle, I never referred to myself as a single mom.  I took my kids to live in Norway.  I secured a paid contract after being at home with children for six years.  I discovered a new persona and crawled into the safe protection of the armour of the brave and strong.

When I moved back to Canada from Norway, I rented a crappy little house with my two young kids.  As is the way with houses, it required a lot of upkeep.  There were walks to shovel in the winter and lawns to mow in the summer.  I did all this myself.

One day I met this nice guy named Mike in the photocopy room at my work.  After dating for a few weeks, he offered to mow my unruly lawn.  “NO!” I said angrily.  “I can mow my own lawn.”  Later I was talking on the phone with a friend, telling her about his ridiculous offer.

“Oh Sue,” she said wearily. “Just let him mow your damn lawn.”

The rest is history.  I allowed Mike to begin patiently and steadfastly chip away at my armour of the brave and strong.  He’s been doing so for the past 17 years.

But when our son Aaron was born, I acquired a whole other set of armour.  Having a baby with Down syndrome made me feel really vulnerable and I didn’t like feeling that way one little bit. After finally letting go of my single mom armour, I tried on the ‘special needs mom’ armour for size.  It fit pretty well.

This new supersuit served me for 14 years.  I started a mom’s group, co-founded a peer support program and lobbied hard for a Down Syndrome Medical Clinic at our local children’s hospital.  I even began paid work in pediatric health care in the area of family engagement.

This over-achieving was really a way for me to stay warm and dry in my brave and strong armour and fill myself up with the busy life.  I was desperately trying to make sense of my new identity as the mother of a disabled child.  In this I did do some good, built some legacy projects, but I also totally lost myself along the way.

Four years ago, we moved 1,200 kilometres away from the prairies to the west coast.  My strong armour began to fall apart again.  I had no friends.  I had started a brand new job.  I had to figure out new supports for Aaron and help build him a community from scratch.  I was often hopelessly lost in the big city.

Then I had to leave my job to care for my son.  And three months after that I was diagnosed with breast cancer.  After my diagnosis, I lost friends and family.  My remaining armour fell off in big heavy chunks.

When I got cancer, many people told me I had to be brave and strong.  But I was tired of being brave and strong.  That armour is really heavy.  I said no, no I can’t do that anymore.  Plus, during my cancer diagnostics and treatment, I became exceedingly fragile.  I was more vulnerable than I had ever felt in my life. I was often literally stripped bare on examining room tables.  I had nowhere left to hide.

This brings me to today.  I have now lost my armour and I don’t want it back.  I think pretending to be brave and strong all the time does us women a disservice.  We never allow ourselves to take a rest.  We are always soldiering on.

Through many hours of therapy, I have discovered these simple facts:  It is ok not to be brave.  It is okay to be scared.  It is okay to be weak.  These are all qualities of simply being a human being.

If you are getting tired of being brave and strong all the time, I want you to know that it is okay to take off your armour.  Find your safe spaces with the people who unconditionally love you.  You can hand off saving the world to someone else.  It is okay to take a little rest now.  xo.

 

to feel alive

Aaron Waddingham

Photo by Ryan Walter Wagner at Goodside Photo

This is my fourth day on Granville Island in Vancouver killing time and staying close as Aaron attends a Teen Improv camp at the Improv Comedy Institute.  I’m tucked away in a courtyard nursing a coffee and watching the gaggles of tourists stroll by.

Aaron’s high school drama teacher suggested that improv skills would help his burgeoning acting career.  So here we are for two weeks on Granville Island.  I do the driving and Aaron does the work.

Earlier this year he had an audition for a part in a TV series for a character with Down syndrome (spoiler alert, he didn’t get the part).  I asked him how he felt after his audition with the casting director.

“I feel alive!” he said, his eyes big, his arms outstretched.  His dad and I know that it is our job to support our children so they can do the thing that makes them feel alive.  For my oldest son it is music.  For my daughter it is nursing.  For Aaron it is acting.

Through a series of circumstances and a touch of serendipity, Aaron has been signed by a talent agent.  Roles for disabled actors are scarce, but we have been assured that opportunities are growing.  Aaron now has to put in the work to hone his skills just like every other actor.  He already works one-on-one with an acting coach, is in high school drama classes and a local acting school has welcomed him with open arms into classes this fall.  This summer, he tackles improv.

On the TheatreSports website it says: The Vancouver TheatreSports League and the Improv Comedy Institute are actively looking to encourage diversity within the improv community. As improvisers, we tell stories and we want our stories to reflect the experiences of our greater community.  They’ve backed this assertion up with action.  Aaron has been welcomed into the teen program like the other kids, together with kindness and accommodation from the Outreach Coordinator.

I promised to hang around the theatre in close range just in case they need me.  Now I’m not sure what I’m needed for.  After the first class, the instructor emerged with a big smile and reported a good day.  Yesterday I glimpsed Aaron standing in front of the class, giving suggestions for topics for skits (chickens, I overheard him say).  He’s holding his own.

This morning there was a new development – he crossed the street by himself before he disappeared out of sight into the building.  (This is a big deal in our world).  His mother is slowly releasing her apron strings.  He lopes out after class with his headphones on and a grin on his face.  “I am independent, Mom,” he informs me.

To me, the creative community seems to demonstrate an authentic commitment to diversity and inclusion.  They have been more accepting of my son than the academic or sports worlds ever have.  Perhaps creative types grew up knowing what it felt like to be different, to be on the edges, to struggle with belonging.  I felt the sting of exclusion, never fitting in, being called an ‘artsy-fartsy’ in the yuppie and jock decade of the ’80’s.

It wasn’t until I transferred from Nursing into English in university and immersed myself in Shakespeare and art history classes that I finally found my people.  I was the quiet bookish girl with oversize glasses and frizzy hair.  It was other people in the arts who accepted me just as I was – all awkward, introverted and breathlessly passionate about words.  (I’m still that way).

And so this is my dream for Aaron too: that he’s accepted just the way he is.  He’s a funny guy, he loves to perform and yes he has Down syndrome.  Ask him and he will firmly tell you:  I am an actor.  I wish I had a fraction of his confidence.

He feels alive when he is performing.  At our core, isn’t that what we all want – to feel alive?

I’m grateful to Rachelle Goulter at Vancouver TheatreSports, his agent Lena Lees-Heidt, his acting coach Lane Edwards and LyreBird Academy of Dramatic Arts for all giving our boy a fighting chance.  I hope the next time I write about Aaron the actor he has landed a part.  But in the meantime, we are sitting back and enjoying the ride.

How Patients Included is really about Inclusion

 

I stopped going to health conferences when I was diagnosed with cancer two years ago.  With this pause came perspective.  As a mom attending pediatric conferences, I often had to beg for compensation if I was a speaker.  Even if I was an attendee, I had to go through long, drawn-out negotiations with conference organizers and accounting departments to get my expenses covered.  Every single time I went to a conference there was a cost to me financially and personally.  There was a cost to my family too.

It started to feel like I was an add-on to the conference as a token patient just so they could self-accredit and say they were Patients Included.  With my pause in conference-attending, I now see that I didn’t just FEEL like a token patient, I WAS a token patient.  I now have the clarity to observe that conference organizers treat other patients and families shabbily too.  I would like this practice of shabby treatment to stop.

I was going for one of my regular walks recently and chatting on the phone with Isabel Jordan, who is the co-author of both this great article about compensation and the Patients Included movement.  We have had many conversations about partnering with patients.

My epiphany as I was crunching along a forest path was this:

The principles behind Patients Included at health conferences and the inclusion of disabled people are the same.

Inclusion is inclusion.  Take a look at the now-famous diagram of inclusion that I’ve posted above.  Let’s look at each of those circles under a health conference lens:

1.  Exclusion

For years, patients have been excluded from health conferences.  (This still occurs – even with Patient Engagement conferences.  If you can’t see the irony with that…).  For instance, at cancer conferences in Canada, the idea of inviting patients is still a brand new thing.  Most times we just don’t get invited.  Or one super-celebrity patient gets invited and nobody else. That, too, is exclusion.

2.  Segregation

Sometimes a group of chosen patients are invited to a conference.  There patients are ‘allowed’ to have their own sessions, separate from the rest of the conference.  This is better than exclusion, but it is still segregation.

3.  Integration

This where patients are ‘allowed’ to attend and ‘allowed’ to be in the same room as the other conference attendees.  I’ve been to those conferences – us patients often clump together at sessions and social events and not recognized by the other conference-goers.  Literally nobody saves us a spot at their table, so we sit at our own tables.  Most conferences are like this.  Patients are reluctantly invited and not embraced or accommodated to be full participants.

4.  Inclusion

This circle depicts inclusion.  This is something to aim for and illustrates the intention behind the whole Patients Included movement.  See all the coloured dots that aren’t green?  Those spots are all the patient attendees.  Here we are on conference planning committees, invited (and paid) as speakers and sitting at the big kids’ table with everybody else.  It is important to note that there can be exclusion even within this inclusion model.  That happens if the same patients are invited and attend conferences over and over again.  Within patient groups there can be exclusion too.

Hanging out, patiently waiting, on the other side of inclusion is belonging.

In talking about inclusion of kids with disabilities, Sara Pot – paraphrasing from John Swinton – says it best:

Inclusion = we’ll make room if you show up.
Belonging = you need to be here and you’re missed when you aren’t here.

Now apply this to health conferences.  You have to work your way through these circles and do inclusion right before you even get close to belonging.  Right now, many conferences struggle with even making room and helping patients show up.

Cynical me wonders if health conferences truly want patients at “their” conferences or if they see Patients Included as a tokenistic trend and a flavour of the month.  This would be a real shame and I think a grave misuse of the intention of the original Patients Included charter.

Optimistic me believes that authentic patient inclusion at health conferences can be done.  The key is that patient inclusion (and eventual belonging) will only happen if we do it all together.  If you are unsure if your conference is truly Patients Included – beyond accrediting yourselves and putting Patients Included on your website – you need to ask patients themselves.  Bonus points if you seek a diverse assortment of opinions and don’t just talk to your favourite patients.

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Note:  If you are interested in improving your health conference, I’d recommend you consult with patient partners early on in your planning.  They can help light the way. I do know patient partners who do this kind of work – send me an email and I can connect you up…