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.

the gentle hearts will help us heal in the end

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A painting given to my daughter, a gentle soul who is entering her third year of nursing school.

It is a commonly held notion that patients will only give feedback when care is either very bad or very good. Those who have ordinary experiences do not usually take the time to write a letter or fill out a comment card.  I’d like to commit to speaking up when things go well, as well as when they go poorly.  Here’s my story of a perfectly ordinary appointment.

Today I had time booked with a radiation oncologist at the cancer centre.  I think appointments with oncologists strike fear into most people.  It must be a strange job to be an oncologist and have people show up in your office terrified to see you.

This was my first time back at the cancer centre since my last day of treatment.  On the drive there, I was an anxious mess.  I drove as fast as I could in bumper-to-bumper Vancouver traffic and loudly played a Tragically Hip live album on the car stereo to give me some moxie.

Courage, my word
It didn’t come, it doesn’t matter
Courage, it couldn’t come at a worse time

My regular radiation oncologist was on holidays, so I was booked into see someone new.  I woke up this morning awash with anxiety thinking about this new doctor. What if he wasn’t kind? And yet another new person looking at my poor boob and this time a man to boot? Great. I might as well be marching through the cancer centre with no shirt on with the amount of dignity I have left.  I had to go to the appointment by myself, as my husband had to remain at home to look after our son. Being alone never helps my monkey brain either.

I eyed my bottle of Ativan before I left. Isn’t it ironic that the main reason I pop anti-anxiety pills is when I have an appointment at the hospital? I decided instead of taking a pill to park a few blocks away from the cancer centre and walk to see if the trek would help settle me down (it did).

I hiked through the leafy residential neighbourhoods, grabbed an iced coffee and snuck in the back through the parkade elevator. The sight of all the people with cancer waiting in the lobby always makes me sad. In fact, the whole building makes me sad. It isn’t my favourite place to go.

I dutifully checked in with the receptionist, who was pleasant enough, and sat down for about three minutes before my name was called. I have to say that the radiation folks are all very efficient – there’s very little waiting in that department. The nurse (I think?) who fetched me asked how I was doing. She didn’t share her name or her role and I didn’t have the energy to ask. We chatted a bit about burned boobs and fatigue and she left me alone in the room to change into a gown. The radiation oncologist knocked and came in a few minutes later.

He was a young physician with a gentle manner. He introduced himself and shook my hand.  He sat down in the chair while I was perched on the treatment table. I knew this was my last radiation oncology appointment and so I had my notebook with my list of questions for him.

In total, he spent almost half an hour with me. He never appeared rushed or glanced at the clock. He was both professional and friendly. He smiled and made eye contact. Except for my physical exam, he remained seated and clearly answered all my questions. It reminded me how important communication is for physicians. It must be challenging to read a patient when they first meet them to figure out how to talk to them like they aren’t stupid, but in a way they understand. Translating recurrence rates, statistics and risk factors into layperson terms takes talent and skill.

He wasn’t rushed and didn’t seem to try to be wrapping the appointment up in any way. I never felt as if I was intruding on his time. He was there for me for the entire half an hour. He said a number of times – if you ever want to come back and see us, just give us a call. He shook my hand again when he got up to leave.

I walked back to my car feeling calm and relaxed. I felt as if I was taken care of, mostly because of how this young physician behaved and not what he did. His friendly, calm, unrushed manner turned what could have been a stressful and upsetting oncology appointment into a perfectly fine oncology appointment.

I assert that the so-called bedside manner matters a lot. While our interaction might have been just an ordinary appointment, it meant much more than that to me. I’ve said it before but it bears repeating: it is these little things – a handshake, a smile, patience, eye contact, a calm manner – that mean a lot to us vulnerable, broken patients, every single time.

Medicine might cure (sometimes), it doesn’t always heal. This oncologist was not only a specialist, smart and brimming with lots of medical knowledge, but he was a healer too. And right now, I mostly need to heal.

Cheers to all the healers out there, who comfort and alleviate suffering just by holding space for their patients. Holding space is the ultimate demonstration of respect for patients.  I strongly believe that it is these gentle hearts who will help us heal in the end.

an open letter to radiation therapists

June 9, 2017

Letter to folks at Radiation Therapy

I’m done! I moved a crabby, wounded animal on my first week of treatment through to feeling a glimmer of joy today that this cancer business is done (for now).

You have helped me these past four weeks. Thank you. I always presumed competence, but it was your kindness and humanity that set you apart. Here are the small things that meant the world to me:

  1. Eye contact, introductions and smiles.
  2. The offer of a warm blanket.
  3. Chit chat – about the weather, colour of my nail polish, my family, plans for the day.
  4. Helping me on and off the table.
  5. Covering me up as much as possible.
  6. Telling me what you were doing as you went along. (This lessened anxiety, a lot).
  7. Your respectful treatment of my husband and son when they came in.
  8. Being open to answering my questions. Prompting me to ask questions. Saying, ‘what questions do you have’ instead of ‘do you have any questions’
  9. A reassuring hand on me.
  10. Not appearing rushed, even if you were.
  11. Your demonstrated compassion: empathy for fatigue, burning, itching, how crappy this whole experience is.

I am grateful for all those so-called little things. I think medicine can cure (sometimes) but it is the love that actually heals us patients.

Please keep doing these things, even if the system tells you otherwise. They matter.

Warmly,
Sue Robins.

(Shared with the Radiation Therapists on my unit at the cancer agency (and their manager) on my last day of treatment.  Although I’m quick to provide ‘constructive feedback’, I also strongly believe in saying thank you too).  

how the little stuff is the big stuff

Screen Shot 2017-04-18 at 8.43.33 PMI’ve been to three cancer physicians the past three months since being diagnosed with breast cancer.  (Let’s all agree not to call my experience a journey or battle okay?).

There aren’t any navigator programs for cancer patients here, so my dealings have been directly with physicians.  I wish I had access to a nurse or nurse practitioner, but that is not how things are set up in British Columbia.

My first physician was a surgeon who was all business.  Yes, I know surgeons aren’t famous for their bedside manner and as far as I can tell, she did a fabulous job cutting out the cancer out of my body.  People say surgeons can’t get emotionally involved with their patients and still be able to cut them open, so I tried my best to understand this.  She reviewed my results with me too quickly for my muddled head, but thankfully I saw my family physician a few days later and she translated the pathology and my surgeon’s scribbles into a language I could understand.

My second cancer physician was the medical oncologist (shortened to the funny-sounding MedOnc in the cancer world).  I mostly saw her resident, not her. This oncologist kept calling me Ms. Robins which was disconcerting and made me feel like she was talking to my mother.  She was brisk to the point of being dismissive.  I don’t need chemo so she didn’t have a lot of time for me and waved my silly questions away.  It is true that she had other patients to see who had more serious kinds of cancer, so I tried my best to be understanding of her approach.  I took my puny little cancer and slunk away as fast as I could.

I have been a mess after each of these appointments, hand-wringing and second-guessing everything the doctors told me and ruminating on every word they said for days afterwards.  Ask my sweet husband – this has not been fun.  Frankly, I have been acting like a wounded animal.  I realize I was struggling to trust what surgeon and medical oncologist told me because I did not sense they cared about me.  Well, maybe they did care about me, but they didn’t demonstrate they cared about me. Also, I’m not a good mind-reader, so any caring they might have in their hearts went entirely undetected by broken (and admittedly-sensitive) me.

Yesterday I dragged my demoralized self to the hospital to meet yet another physician – this time a radiation oncologist.  The nurse ushered anxious me into the clinic room.  The first thing she did was she asked me if I wanted a warm blanket.  A warm blanket!  I love warm blankets.  This appointment was off to an unusual start.  My shoulders instantly relaxed and I breathed a bit easier, cosy under my coveted blanket.

Next, my new doctor knocked on the door and introduced herself to both me and my husband.  She was genuine and lovely.  She reviewed my pathology results in regular person language, leaning on gardening metaphors and pausing to ask what questions I had.  She asked me what kind of writing I did.  She patted me on the leg a few times, which gave me great comfort.  (There’s not enough healing touch in health care.  To me, that simple touch gave me a little peek into her caring heart).

She asked me if I wanted to ask my list of questions first, or if I wanted her to explain things and then I could ask any remaining questions afterwards. (I chose the latter).  A few times I started to say something and stopped, worried about interrupting her – and she immediately paused and gently said:  yes, yes, what did you want to say?  She did not appear rushed in any way, even though she had a roomful of patients in the waiting room.  She even shared her email address so I could ask any follow up questions when I got home.

By the end of the appointment, the wounded animal in me had disappeared.  The kindness settled me down.  I felt connected to my new doctor and that connection was blossoming into the beginning of trust.  This is more than merely being nice – it is about laying the foundation for a relationship.

All the little actions helped to heal my fragile heart – from the warm blanket, the introductions, her gentle approach, her hand on my leg and the way she held space for my questions. All this so-called soft stuff is so much more than just kindness.  With her words, gestures and actions, this physician was demonstrating respect and caring too.  It was not only what she did, but how she did it.

I might still have cancer, but I am finally at peace for the first time in a long time.  This is because I feel taken care of. These little things may seem like nothing to you, but in my current state of heightened vulnerability, they mean just about the world to me.

be kinder than necessary

It has been a long & emotional week.  I flew to Ronaoke Virginia for the great honour of being one of the plenary speakers to open the Collaborating Across Borders conference for interprofessional health educators.

Before I left my room for my talk, I left $2 on the pillow for the housekeeping staff.  That’s a habit I have adopted over the years and my husband teases me that I’m forever looking for tip money.  I figure that being a housekeeper in a hotel is a pretty thankless, low paying and sometimes disgusting job – so leaving two dollars on the pillow seems like a very small token of appreciation.

I then went to the ballroom, and climbed up on stage and looked out into the sea of close to 1,000 participants.  I couldn’t actually see their reactions to my talk, because there were so many people out there.  I could hear in my voice that I was nervous for the first few minutes and stumbled over my words until I settled down into a more even rhythm.  I tried to forgive myself for not being perfect.  The crowd was engaged and respectful, and I was appreciative of their attention and applause.  My talks are basically about compassion, and how I believe that actively listening to patient stories can lead to more compassionate health care. One of my mantras is that I’m talking about kindness, and kindness is free.

Afterwards, I stuck around for lunch and attended some sessions.  Then I needed to retreat into my room for some introvert time.  My room was nice and tidy and my bed was made.  On the covers was this note:

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I had given only $2 and I received this beautiful note in return.  To the lady who does the housekeeping:  I did have a bless day.  Thank you for being a part of that.  Such a small effort on my behalf for such a large reward.  I’ve tucked this little note away in my notebook to remind me, even if I am weary or rushed, to always be kinder than necessary.  As the saying goes, for everyone you meet is fighting some kind of battle.  God bless you too.

keep on spreading that love

spreadingloveAn essay I wrote for the Canadian Medical Association Journal called About Dr. Darwish now has public access.  Hurrah!  (I was cursing the obligatory paywall it was hiding behind for a year after publication in May 2014).  But here it is.  It is free for the reading.

I share this story widely in my work with health professionals.  It was written in honour of Dr. Azza Darwish, who was Aaron’s pediatrician after he was born.

This story says to every single person who works in health care: you have the power to put patients and families on a path of strength and hope.  

Azza Darwish did just that the years we were blessed to have her on this earth. Her memory lives on every time there is a kind and compassionate interaction in the health care system. Let’s all keep spreading her love.

being quiet and humble and good

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I read the essay A Moral Bucket List by David Brooks in the New York Times last week. I shouted YES after I finished reading it. I might have even pumped my fist in the air. This one is a keeper, and I officially will add it to my Gospel of Really Good Writing That Tells The Truth.

There are so many gold nuggets of phrases and ideas in this piece that you should just go read it yourself. Brooks talks about collecting virtues that you’d want mentioned in your eulogy, like being brave, honest and faithful. He says that suffering introduces you to yourself and reminds you that you are not the person you thought you were. And this: ‘…and at moments of rare joy…the ego rests.’

If you’ve never been humbled in your life, don’t bother reading this because it will make absolutely no sense to you at all.

Yesterday, a scrabbly-looking old man came up to me in Langley asking for directions. Now I’ve been to Langley like twice in my entire life, so I’m hardly a local. But I knew that he had just asked some other people to help him, and they had turned him away. So he and I stood and looked at the address on the envelope he was holding. I punched the numbers into the map app on my phone. I asked him if he was walking or driving. Walking, he said. We figured out the address was a six minute walk, and I pointed the way, citing landmarks. He was so relieved I helped him. It took all of four minutes of my time. Afterward this simple task, I felt as if I had contributed some material towards my eulogy.

But before my head gets too big, I also like to remind myself how I have fallen.

I try to be kind, but if people piss me off, I’m not kind at all. I do not feel kind towards my husband’s ex-wife or certain politicians, for instance. I also feel no kindness towards the psychologist who wants to administer an IQ test to my kid with Down syndrome. (In fact, part of my demonstration of unkindness is mentioning these people in this piece). See what I mean? If you wrong me, I will also write about you. That’s not a very nice thing to do.

I’ve also yelled at my kids, especially my older ones. I made some bad dating decisions when I was a single mom. I’m flawed in my relationship with food. I try to be brave, but am a bundle of anxiety before speaking engagements. I like nice hotels a bit too much. My ego gets in the way when I want to shout: DO YOU KNOW WHERE I HAVE BEEN PUBLISHED? (That’s terrible, I know. I’ve never actually said that out loud, but I’ve thought it a few times).  I check my Facebook, Instagram and Twitter feeds for notifications too often.

I think David Brooks would say this is all ok because I realize my limitations and I work to overcome them. I am so very passionate about love, kindness and compassion in health care that I do not even bother to contain this passion, and I have turned into one of those lucky people who does what she loves for a living. I hope this drives me towards the good, if I can keep my damn ego and that voice that administers negative self-talk out of the way. I feel extremely lucky most of the time, and sometimes I even feel blessed.

I’m going to keep aspiring to be a ‘stumbler.’ If we are lurching through life unbalanced, that means we have dropped all notion of even attempting to be perfect or normal. (Both of which do not exist by the way).  I’ve significantly pushed off my pedestal twice:  once when my first marriage split up, and another when my youngest kid was born with a disability.  And then I’ve been pushed off so many times since that I don’t even bother crawling back up there anymore.

I’ve also had glimpses into those beautiful moments of true joy, where I realized that life is not in black and white – it exists in a stunning rainbow of colour. These moments only come when we open our hearts to everybody, including ourselves.

You see, there is an invisible current of life, just below the surface.  If you are quiet and humble and good, you will soon discover that secret place – that’s where all the magic lives.