make space for the suffering

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The older I get, the more conflicted I feel about everything.  I hope feeling conflicted is in fact related to my growing sense of humility as I open up to other points of view.  The more I know, the more I know I don’t know.

I used to despise the word suffering, as it is misused all the time in reference to people with disabilities.  The horrific term ‘burden and suffering’ is often widely applied to human beings with differences, both before and after they are born.  I still call bullshit on this stereotyping of other human beings in order to categorize them as less human.

So I dismissed the word suffering outright until I was diagnosed with cancer last year.  It was then I felt the true meaning of suffering, as the past few months have been fraught with unresolved physical and emotional pain which was triggered by my cancer.  I continue to heal from that experience.

I encountered Carlyn Zwarenstein’s writing about pain a few months ago.  She invited me to look at the notion of suffering in her important book called Opium Eater, The New Confessions.   Opium Eater is a small but mighty book that examines the use of legal opioids to manage chronic pain, looking at the historical, economical and emotional aspects of alleviating pain. Carlyn deftly draws upon the literary world for understanding. Andrew Sullivan’s recent New York article The Poison We Pick also tackles the concept of pain.  He identifies pain as simmering underneath the terrible mounting opioid overdose deaths.  As he explains about opioids: It is a story of pain and the search for an end to it.

A year ago, I wouldn’t have comprehended the depths of such pain.  But today I have a glimmer of understanding.  While I am privileged enough to keep pain at bay with the occasional Ativan and regular therapy sessions, cancer has humbled me enough for me to glimpse at the great suffering in this messed up, beautiful world.

Part of my own healing has been writing.  A few months ago, I was asked by Dr. Janice Bell to write a guest editorial for the Journal of Family Nursing about my perspective on suffering.  It was published yesterday and is called Make Space for the Suffering.

I’m pleased that health care academic journals are starting to make space for the patient voice on their prestigious pages.  I believe the inclusion of the patient voice makes their pages even more prestigious (and legit).  This most recent editorial is a plea for health professionals not to turn away from patients’ and families’ pain.

I will continue to say over and over again – I’m a broken record – as I dare you, health professionals, families and friends, to draw upon compassion and not turn away from our pain:

Healers turn toward patients and families during their pain. A warm gesture, kind word, or gentle touch reminds us that we are not alone and makes space for our suffering. While health care can (sometimes) cure, it is love that will heal us in the end.

Unrest, the Film

As I lay in my own bed watching the film Unrest, it struck me as incredibly unfair that scores of patients (85% of patients are women), who have Myalgic Encephalomyelitis (ME) have to fight for understanding from the world every day. I am a woman healing from breast cancer, a kind of cancer that’s suffered from the exact opposite problem than ME – a pink onslaught of awareness that is teetering on overexposure.

I never had anybody question my symptoms. When I presented to my family physician with a lump in my left breast, the slow cogs of the health care machine began to move to put me on the treadmill to diagnosis. Once diagnosed, I was sitting at a surgeon’s office one week later and under the knife two weeks after that. Radiation came two months later and that was that (except for my struggle with my mental health collateral damage).

As Jennifer Brea so brilliantly illustrates in her film, ME has no such diagnostic machine. Early in the film, her husband Omar Wasow wisely advises Jennifer as they are on their way to the Emergency Department:

If you say too little, they can’t help you.
If you say too much, they think you are a mental patient.

What he says is true. Presenting at the hospital is tricky business. I’d add, there should be nothing wrong with being a mental patient, but of course there is. There’s plenty of stigma and disbelief that comes with mental or emotional symptoms. That should not be so, but it is. ME is not ‘just in your head’ but what if something else was? Care and compassion should not be dismissed simply because there’s been no found biological cause.

But of course I’m being naïve. Patients, and dare I say, women, are dismissed all the time. Even in breast cancer, common as it may be, women are, encouraged to deny the realities of their own body, as the great Audre Lorde says. Our side effects are scoffed at and dismissed, we are told we are lucky that we aren’t dead and to be quiet and be positive. There’s great pressure on those who have had cancer to ‘get back to normal’ and even worse, to be ‘better than ever!’ Nothing ever goes back to normal after a glimpse into death. But many in our families and in health care are uncomfortable with any narrative other than the ‘I’m cured!’ heroic story. This is not our reality.

There are many remarkable elements in Jennifer Brea’s Unrest film. Jennifer made the film from her bed. This makes me pause and wonder what able-bodied me has accomplished lately. She tells not only her story, but the story of other people around the world with ME too. This is not a story of redemption – there is no happy ever after. This is real life. She’s not afraid to be vulnerable and for that I applaud loudly. It is tough to put yourself out there, but it is absolutely necessary too. You witness her pain, her struggle and ultimately, the love of her husband too. Like Rana Awdish’s In Shock book, Unrest is a love story too. It is a story about caregiving administered with deep affection.  At one point her husband Omar tells Jennifer, you bring joy to my life every day.  This is a tender insight into what most people don’t understand about caregiving, as I say about caring for my son with Down syndrome – it is done for love.

My friend and former colleague Kathy Reid works in a pain clinic. She told me the first thing that she tells new patients is I believe you. So many times their pain has been scoffed at or minimized.

If people arrive at your doorstep in pain – any kind of pain – emotional, physical, mental, spiritual – do not dismiss them. Do not turn away. It is the job of the healer first to listen and then to believe.

To find out more about ME, check out the Tools section on the Unrest website. Us patients need to stick together – breast cancer, metastatic breast cancer, other cancers, ME, other chronic diseases. It doesn’t matter. The only way change is going to happen is if we pause in the fierce war to compete for resources to lift each other up.

I’ll end with quoting the entirety of Audre Lorde’s famous words from The Cancer Journals, dedicated to Jennifer Brea:

I was going to die, if not sooner then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you. But for every real word spoken, for every attempt I had ever made to speak those truths for which I am still seeking, I have made contact with other women while we examined the words to fit in a world in which we all believed, bridging our differences.

i’m a difficult mom


Me as a mom in the hospital

I once got up in front of an audience of clinicians and announced: I am a difficult mom. I added, if your child was hospitalized, you’d be a difficult mom too.

I was on a mission to change the way family ‘complaints’ were viewed at this children’s hospital. When I resigned from my position last year, this work was left half-undone. I hope it has continued.

My assertion was this: what if family complaints were seen as constructive feedback? What if we, as staff, sought out this feedback and saw complaints as wisdom? And then we applied wisdom from families that grew from difficult situations to improving the quality of care at the hospital?  This was a common-sense, but revolutionary notion.

I drew a fancy process chart with a narrative to encourage a standardized way for staff and managers to respond to constructive feedback. I suggested that all staff – including those in clerical positions – especially those in clerical positions – be offered ‘conflict management training’ to prevent issues from escalating. This type of training teaches things like, ‘saying yes instead of no,’ – and customer service concepts. While the term ‘customer’ makes many folks shudder, think about if those who work in health care are committed to care and service. Drop the word ‘customer’ and then you can simply think about serving patients and families instead.

But first, I had to share my story in the auditorium packed with hospital staff about how I’d been a difficult mom. As with most of my talks, my intention was for the staff to see themselves reflected in my words. I asked them to think how they would respond if they had a concern when their loved one was in the hospital. I can’t imagine that most health professionals would be meek and compliant family members.

I explained how it felt to be a mom in the hospital: You may well be catching families when they are at a low point in their grief. I once had a wise physician tell me she teaches medical students that anger is often masking fear.   Often anger is misdirected. Families may be seeking a diagnosis, reeling from a catastrophic accident and worn down by the system.

I talked about the reasons why families can be challenging partners:

  • Loss of control
  • Fear
  • Pain
  • Grieving
  • Information overload
  • Feeling hopeless
  • Cultural differences with staff, leading to staff assumptions and miscommunication
  • Fear of negatively affecting their child’s care if they speak up

There are certain practical things can make this worse. Lack of sleep. No coffee. Being hungry. Worry about other kids at home. Worry about money and work. Compound that with stress about their beloved child-patient and you create a difficult situation, not a difficult family, says this article called Difficult Families?

I gently suggested: please pause and always consider how families are feeling. You might not be able to put yourself in their shoes, but move towards a kinder understanding of their perspective. One lesson I learned from my divorce was ‘don’t poke the bear.’ Why make angry people angrier? There is no healing in that.

I had been introduced to many families at the hospital in the midst of their ‘complaint’ process. I didn’t want to be the complaint lady – instead, I wanted to teach staff how to prevent complaints themselves and that’s by being patient and family centred.   I wanted to suggest how to respond to negative feedback when it inevitably occurs. (I think we can all agree that hospitals are not perfect places). This is my ‘teach a person to fish’ philosophy. Immediately shuffling families off to some complaint lady only minimizes their concerns, absolves staff of any responsibility and teaches folks nothing.

The staff just didn’t know what to do with these families. They felt defensive and took negative feedback personally. This is human nature. Some wrote families off as ‘difficult’ or ‘hysterical,’ which is an easy way to stereotype and dehumanize people so you don’t have to think of them as people anymore. It is good to pause to notice if we are categorizing people and why.

I shared some of my personal approach to partnering with families who had constructive feedback. (And if we think of it, wouldn’t all families and patients have constructive feedback after an experience, if we only we were brave enough to ask them? Why do we wait until they bubble up as ‘complaints’?).

Sue’s Philosophy For Staff Working Families Who Have ‘Complaints’

  1. Check in with how you are feeling. Don’t judge your feelings but be aware of them. Take some deep breaths. Go for a walk before you pick up the phone or meet with families if you can.
  2. Don’t delay responding to the family. Delays make things fester.
  3. Avoid escalations over email.  Be respectful and suggest meeting in person if possible. (See #7).
  4. Consider framing complaints as constructive feedback and being open to learning in order be better – both personally and professionally.  We can all improve.
  5. Consider how constructive feedback can feed into quality improvement activities to improve the experience for future families.
  6. In this purely unscientific approach, I found that the root of 90% of ‘complaints’ was that people didn’t feel listened to, so….
  7. Start by setting a warm tone for authentic listening. Consider meeting outside the hospital, going to the families in their own communities – at their homes or a local coffee shop. Give families choice in when and were they would like to meet.  Don’t drag them into the hospital again.
  8. Suspend the notion of being a fixer and show up as a healer instead.
  9. It is okay to say I’m sorry.
  10. It is okay to say I don’t know.
  11. Ask the family what they’d like to see as a solution.
  12. Follow up and do the things you promised to do.
  13. Consider asking the family if they’d like to share their wisdom with others in some way. In my experience, in time, families with ‘complaints’ have the most valuable lessons to teach to Grand Rounds, medical students, committees and councils (if they so want). Many families have a strong need to improve situations in the system so they don’t happen to other families too.
  14. Take care of yourself after challenging situations at work.  Engage in reflective practice techniques, thinking about how things went and how you would make them better next time.  Do not forget to be kind to yourself too.

There’s no research behind my philosophy. There’s just 24 years of being a mom and thinking about how I wished I was treated when I was speaking up for my children (and more recently, advocating for myself as a patient). I’ve been ignored, minimized, blacklisted and dismissed over the years. While this feels crappy because I like to be liked, I still don’t regret speaking up.

As Audre Lorde says: When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

It is up to those working in systems to honour all voices, not just the positive ones. You can’t be heroes all of the time. But every single person who works in health care can be a healer.  Please, help us heal.  Don’t turn away from our suffering.  You might just learn something from what we have to say.

For more on constructive approaches, read Yona Lunsky’s How to move from competing to complementary perspectives and Donna Thomson’s How We Go From Competent Caregiver to Family From Hell.


the gentle hearts will help us heal in the end


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.

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.

my why

Today I excitedly opened an email from a conference that I really really wanted to attend.  I had submitted an abstract called The Art of Storytelling:  how to craft stories to change the health care world.  I am pretty good at writing abstracts, had a solid creative presentation to pitch and have a decent acceptance rate for abstract submissions.  This was a conference I admired, in a city close to my eldest son, so I was crossing my fingers that I’d be accepted for a variety of reasons.  I clicked on the email in my inbox, holding my breath:

We regret to inform you that your submission was not chosen…

Well, damn.  I know Wayne Gretzky says, you miss 100% of the shots you don’t take. As a writer, I get rejected a lot (which tends to be radio silence in this digital age, not mailed rejection letters), but damn.  It always stings.

I’ve been floating around as of late.  I resigned from my paid staff position last month.  I’ve had two kids grow up. My youngest son hit puberty last year and is in a push for independence, which of course results in the slow rejection of the mother.  I miss hanging out with my daughter and doing girl things. I pine for my mom friends in Edmonton. Everybody here seems so busy – I’ve discovered that the laid-back west coast mentality is only an urban myth. I cannot even occupy myself with shopping for stuff and cleaning my big house – we’ve downsized by half and I have no more big house, no yard and no room (or desire) for more stuff.  This week we are in the midst of an odd blizzard and have been stranded up on our mountain.  I have time now to think, which is a terrifying concept in a world where we get caught up in the Busy Trap just so we don’t have a moment to ourselves.  The whole world is zooming around me so fast and here I am, just quietly sitting on a bench watching it go by.

Before I left my position, I had two wise colleagues separately recommend Simon Sinek’s TEDTalk to me.  It is called How Great Leaders Inspire Action, and while by title I’m no great leader, I do have a little sphere of influence, with my family, my company and myself.  I’d suggest it is worth 17 minutes and 57 seconds of your time.

If you don’t have the time to spare to watch it, consider this diagram:


(saved from:

If you are feeling a bit lost and lonely like me, or if you have the nagging feeling that what you do in life is not in alignment with your values, this approach can give you direction.  Sinek’s point (in business, and I’m extracting his message to apply to life) is that the why matters.  Why do you do what you do?  And that’s not what your position title is, or your quest to make money to buy more and more stuff – I challenge you to dig deeper than that.  Why are you on this Earth?  If we can all can answer our why, then the how and the what will soon become clear.

So I’ve had the time to think about this a lot (and won’t be wasting time preparing to present to that conference that rejected me, ha) and feel confident in stating:

“I share stories – and create opportunities for others to share their stories – to rekindle compassion in the world.”  That’s my why. All my meaningful work has been born from that why. Now I just have to trust that my why is the light I need to shine my own way.

over and above

Well, oh my goodness, get out a box of Kleenex when you watch this video from the Royal Alexandra Hospital Foundation in Edmonton.  My husband showed it to me in the waiting room of our son’s reading program.  I had to explain to his reading teacher why I was sobbing when I picked him up.  This story moved me deeply.

First, I love the way the video was shot – with very little dialogue, and the lyrics of the song filling in for actual words.  What happened needs no explanation – just watching the images flickering on the screen is enough.  Of course I also thought of my own beloved grandparents, who left this earth not that long ago.

I read somewhere, and I like to say:  less health care, more caring.  Less services, more serving.  And that’s exactly what this is about.  I’d also call it Over and Above – meaning for those who work in health care:  what have you done today that has gone over and above the call of duty?  And what if everybody goes over and above every single day?   That would automatically cause a tipping point and trigger the health care revolution that we are all so desperate for.

My challenge to health care leaders:  how do you create opportunities for staff and physicians to go over and above?  How do you reward the over and above?  The reason this story is so special is because what happened is so exceptional – in my own experience in the adult health system, anyhow.  What if we all worked together to make caring the norm?

(A special shout-out to visionaries like David Sheard who are doing this important work right now).