my lady bits

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First my boobs tried to kill me last year (when I had breast cancer) and then my ovary gave it a go too.  Here’s my story of my first responder and Emergency Department experience on Tuesday night.  Edited to add:  to understand the philosophy behind writing during illness, check out Sharon Bray’s wonderful blog called Writing Through Cancer.

It is 11:30 pm on a regular Tuesday night when I’m jolted awake with excruciating pain. It is as if someone has stabbed me in the lower right abdomen. It doesn’t go away or recede – just a constant pain as if I had just been knifed. Not like I’ve ever been stabbed, but still. I imagine this is what it feels like.

My only comfort is to sit up and fold in half over my sore side. Don’t touch me! I say to Mike, silently calculating what is the quickest route to pain medication. It isn’t having Mike figure out childcare and then drive me to the hospital and then wait in the waiting room. Call an ambulance I say.  I don’t care how much it costs.

Are they coming? Are they coming? I keep asking. I’m hyperventilating, shivering and my legs are tingly. I can hear the fire truck roar up six flights below.

Our buzzer rings and all I can see is three sets of large brown boots in my bedroom. They are asking me questions. I’m trying to answer. I can’t look up. They put an oxygen mask on me and leave the mask remnants behind in the bedroom.  They stand over me until the ambulance arrives.

Don’t wake up Aaron, I keep saying. Mercifully, my son sleeps with ear protection on (long story) and remains asleep. I get on the stretcher. I am keen not to traumatize him.  I keep having to straighten out so I can fit through doorways and elevators, but sitting up is agony and I hunch back over the first chance I can get, trying to fold over like an accordion. Someone starts an IV in my inner arm and I don’t care. The ride is bumpy, I ask for a puke bag and they give me Gravol. Nobody wants me to puke everywhere, including me. Someone keeps updating me on how close they are to the hospital. I don’t know if the lights are on, there are no sirens – I’m not dying, only in pain – there’s no use in waking up the entire neighbourhood. I’m trying just to breathe. The paramedics take bets that I have appendicitis.

My first time in the back of an ambulance and it is bumpy. Once we are there, I bumpity bump out of the ambulance. I finally look up to see the paramedics and thank them for being good guys. There’s mercifully no wait. I’m in a bed in a curtained room, there’s misery all around me and now it is 12:30 am. There are vitals and my heart rate has calmed down considerably. The gruff but thorough doctor who shows up says I don’t have appendicitis, for appendicitis doesn’t start suddenly like that. He thinks kidney stones but I’m like, noooo it’s an ovary cyst, which he shrugs off. I have cysty ovaries, I croak. I’m not making any sense or he doesn’t listen to me or both. I am a lady with lady problems.

The morphine makes me woozy but the pain is still there. Mike shows up, having woken up his sister to stay at the house. (Why didn’t he knock on the neighbour’s door? He dragged his poor sister out of bed, but I’m so grateful to her for driving bleary eyed up the mountain to stay with Aaron).

Mike sources a steno chair and sleeps on that. A nurse kindly offers him a blanket. I ask again for pain meds because the stupid morphine doesn’t work and Mike shushes me, thinking I look like I’m seeking drugs. I AM seeking drugs because there is a knife in my belly. I shuffle to the bathroom and then throw up my Tuesday night chili dinner into a cardboard bowl. I get a new pain med – a stinging IM needle in my arm – I don’t mind, it is a distraction from my belly pain, which I’m still trying to breathe through, one breath at a time. This is like labour with no baby at the end. They keep asking me what number is my pain and I keep saying: EIGHT! EIGHT! Like late labour! They give me Dilaudid, which my daughter Ella tells me later is four times the strength of morphine and THAT makes the pain finally go away. Or it makes my head think the pain has gone away – no matter, I have some relief, after three hours of writhing agony.

Some hours pass. I doze in and out, listening to babies crying, people screaming, some security incident. The meds make me don’t care.  It is morning and Mike has to leave to get Aaron ready for school. I’m waiting for my ultrasounds and I realize my meds must have worn off because I’m no longer in pain. The knife has been removed from my belly.

Of course the ultrasounds show nothing. There is a vaginal one too, how fun, with the condom-covered dildo camera. For my abdominal scan, the tech is annoyed my bladder isn’t full – I’m like – well they put me on NPO so sorry. I can’t drink anything. I can tell I’m no longer in pain or stoned because I’m getting pissed off. The tech is teaching a student which normally I don’t mind but it takes forever. She’s also talking to me as if I’m about four years old.

I wait in the hall on a stretcher afterwards for a long time and my doctor happens to walk by. He goes to check my ultrasound. It has shown nothing. I know this is because the cyst has already burst. He’s still talking kidney stones and I’m repeat, nooooo, I have cysty ovaries. He shrugs again. I’m another woman with woman problems. He’s a tough guy but his saving grace is his sense of humour. I make feeble attempts to joke about my cysty ovaries and at least I extract a smile from him.

I text Mike to come pick me up and a crabby nurse takes out my IV. I hold the bandage on my IV site for a while and when I let it go, blood starts gushing out of my arm. Um, excuse me? I stick my head out of the curtain. I’m a bleeder here. She sighs and gets me another bandage. I get dressed and sit on the bed to wait for Mike. She tells me to leave. I look around.  It is 9 am and the ward is empty.  I’m like – I don’t know where to go, an ambulance brought me in. You just follow the green line, she says crossly. I follow the green line outside and stand in the rain and the cold in my pajamas with no coat on and wait for my ride. I see how people are discharged into -40 weather and later die in a snowbank. Honestly, hospitals could say good-bye a bit better. They are like a bad, abusive boyfriend. Get the hell out! they yell when they are done with you.

I sleep all day and then sleep all night too. I think that pain has worn me down more than anything. Today is the next day and I’m tired too. It is grey and raining. I am reminded how complicated the lady bits are. I am grateful for faceless firemen, bumpy ambulance rides, chatty paramedics and almost all of the Emergency Department staff. I understand the desperation to get through that kind of pain. I am thankful that I remembered my labour breathing.

One breath at a time; that’s the only way we can get through. Today I cut off my hospital ID bracelet, scraped the bandage glue off my arm and am humbled once again by the fragility of this thing called life.

The Sinister Side of Patient Engagement


I was a patient engagement person before there was such thing as patient engagement. Ten years ago, I was a mom who was hired by a hospital to advise leadership about family-centred care.  Back then, us family advisors were pioneers, cowboys in a new frontier.  The movement was focused on making the experience in the hospital better for families by creating a family council and it grew from there.

Something more sinister has accompanied this growth. While some hospitals maintain the purity of these patient engagement jobs by hiring those with lived experiences, others have sought to dilute it by hiring staff who do not even demonstrate compassion for the patients and families that they are supposedly to serve. Today, it is often clinicians who are hired into leadership positions in patient engagement, citing: ‘but everybody is a patient!’ – leaving authentic patients and families behind in their dust.

I’ve been despondent about this before, throwing my hands up and despairing: Patient Engagement Has Been Stolen From Patients, but after reading Isabel Jordan’s essay Patient Engagement: You’re Doing it WrongI grit my teeth and dig in my heels, solidifying this stance.   Please take the time to read Isabel’s important story.

How can these new Patient Engagement leaders get it so wrong? How is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone? I’ve gone on and on about the best practice of patient engagement: here, here, here, here, here, here, here, herehere.  Here’s an example of best practice, to contrast Isabel’s horrible awful experience.

If you are working in the area of patient engagement, consider Isabel’s piece very carefully. If you truly are a professional, you will welcome constructive feedback and reflect on what you’ve learned and how you are going to change your practice based on your learnings.  Perhaps you see an element of yourself mirrored in her words.

If Patient Engagement is becoming a profession, there needs to be accountability for it. Like other health care professions, Patient Engagement needs to protect the public they serve – through common best practice, standards, training + continuing education requirements and a path for the public to report misconduct and follow up with disciplinary action. If the health professionals have stolen patient engagement from us patients, then they need to start acting like professionals. Not rude, inconsiderate and disrespectful of the people they are supposedly committed to collaborate with.

Thank you Isabel for sharing your story and wisdom with us. Please share her post widely with those who engage patients: in health authorities, governments, hospitals, research projects, health affiliated organizations – anybody who says they engage patients. Patient engagement, patient experience people – wondering if you are doing a good job?  Turn to the patients and families and ask them.  That’s the only way you’ll ever know.

Never forget, it is an honour to work with patients and families in any capacity. Words are hollow here. If you don’t demonstrate to us through your actions that you believe this work is about serving people, you are in the wrong field of work.  

All the Feels: The Breast Biopsy

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Since I started writing about breast cancer on my blog, I’ve had the good fortune to hear from some lovely women who are in the midst of their own cancer scare or cancer experience, which of course starts with diagnostics.

On any given day, there many women (and some men too) are waiting for a breast biopsy appointment. While I was handed a mountain of patient education pamphlets over this past year, nobody told me how a procedure or test actually feels. Here’s my take on my own breast biopsies, with the important caveat that everybody’s experience is different – because of differing personalities, way to cope with stress, type of biopsy, health care environment and health care professionals.  This is a personal insight into the way I felt last year this time.

1. Waiting Sucks

The waiting really is the hardest part. When the day of your biopsy comes, you put your head down and get it done. But waiting beforehand can be excruciating. Acknowledge that it is hard. Be kind to yourself. Use whatever distraction and comfort methods work for you. For me, it was long walks, movies, Netflix, baths and sleeping. A beautiful healing book I read during this time was Birds Art Life by Kyo McLear.  Looking back, I realize that it was torture to wait but somehow you just do it, one day at a time.

2.  Nuts + Bolts of a Breast Biopsy

I’d recommend getting a ride there and back.  I was anxious during the drive there and afterwards I was sore and bandaged up. Make sure you ask the staff how long you are scheduled for so your support person can go for a walk during your biopsy and not be stuck in the waiting room.

There is no shame in taking your doctor beforehand about anxiety medication. There was no sedation with my biopsies (I had two done at once). Ask your GP about a prescription. For me, it was Ativan.  All it does for me is take the edge off my anxiety and makes me feel ‘ok’.  I don’t like taking pills, but I’ve also learned the hard lesson this year that I don’t have to be strong all the time.

Here’s what I wrote about the mammogram tech at my biopsy:  “The tech there is matter of fact but kind.  She rubs my arm when I get the freezing – I think her kindness is what made me cry.  When I was distorted under that mammogram machine, she brushed my hair out of my eyes.  I think she must be somebody’s mom.”   May you have a kind mammogram technologist and radiologist assigned to you. You can ask them to explain what they are doing during the procedure to help with your anxiety.

The whole procedure is weird.  I had core needle biopsies.  One biopsy involved being positioned in the mammogram machine and being squished and the other one was guided with an ultrasound.  Ask what kind of biopsy you are having.  They give you a needle for freezing before they take the biopsy.  That pinches.  Then there’s this strange ‘box’ that has the core needle in it and they press it down on your like an old-fashioned hole puncher and it extracts the biopsy.  It makes an awful noise.

I looked down during the biopsy extraction and wish I hadn’t because I was bleeding a bit and this made me woozy.

I thankfully kept my eyes closed most of the time, did some breathing like I was meditating and pretended I was on a beach in Hawai’i.  Breathing and visualization has helped me a lot through this whole damn thing.

I walked out with bandages on each biopsy site – which were basically little ‘pokes’, not scars.  My arm was sore for a couple of days from having been in one position for so long.

They likely won’t tell you any results at the biopsy, but you may get hints from the radiologist.  Ask them how long before the results will come in and who will call you. For me, my pathology results came back in 7 days and I got a call about my diagnosis from my family doctor, who had to give me the bad news that I had breast cancer. I hope you are in the 80% of women who have benign results! Again, waiting for results is a horrible time too. My most important tip continues to be: BE KIND TO YOURSELF.  This is a very stressful time even if it isn’t cancer – don’t minimize that.

It is a strange thing to wait for a breast biopsy (or any diagnostics) and then the results.   You don’t belong anywhere – like to a patient community – but you are suspended in an awful purgatory.  I didn’t want to talk to friends who had breast cancer about it because I was worried if my results had come back benign, that might have upset them. I realize now that I’ve had breast cancer, I’m happy to talk to anybody during this awful waiting, whether they end up with breast cancer or not. It does help to connect with folks who have been through similar experiences.

I’ll write more about All the Feels in future blogs…

In Shock, the book

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I read Rana Awdish’s book In Shock quickly and greedily over the span of three days. In books I tend to mark up pages with passages I want to revisit.  Poor In Shock is completely dog-eared – pages turned inward every second or third page.  This is the sign of a good story.  In the grand tradition of physician writers Oliver Sacks and Paul Kalanithi, Rana Awdish has a rare talent for both science and writing.

It would be easy to describe this book as a medical memoir, but it is much more than that – it is a book of loss and grief over the death of a child. It champions quality improvement and compassionate care. In Shock is a love story too.

Dr. Awdish vividly recounts her time spent as a patient in the ICU with a sudden critical illness and contrasts it with her experience in the same ICU as a critical care physician.  This unfortunate coincidence allows for insights from both sides of the bed as both a patient and doctor.

I’m all about the feelings all the time, so I appreciated Dr. Awdish’s skill at recounting how it feels to be a patient.  She doesn’t white-wash the horrors inflicted in the hospital. She also offers practical advice to health professionals about using thoughtful communication techniques to avoid emotional harm.  She emphasizes how as a patient, she was much more than ‘abdominal pain and fetal demise.’   She reminds clinicians how much patients can hear from their beds, even in critical care.  I wince at her recollection of overhearing a doctor say in the ICU that ‘she’s trying to die on us.

The author serves up great insight into the makings of a physician and training programs that train compassion out of the most earnest of students.  I believe the hope for change lies in medical education (and all health professional education), but alas, the workings of that education mirrors the dysfunction of the health system.  The two are intertwined.  I can only hope that sharing patient stories from both health professionals and lay-patients will help.

This book reminded me why I was a failed student nurse – I could not figure out how to detach myself from patients.  Training to mold students into a ‘cooly distant authority’ happens in all health faculties, including nursing.  Dr. Awdish describes her experience as a medical student in the pediatric ICU:

“I found it utterly impossible to be detached or reserved in that unit.”  

Later, she was chastised by a supervising physician for expressing sadness for the death of a child, harshly learning, “…if we felt our feelings, we would kill the people we were supposed to help protect.”

My shock from In Shock was at the effort physicians make suppress to emotion, often at their own personal cost.  My best experiences with physicians have been those when doctors dared show they were human – not in a check-box way – but in an authentic, vulnerable way.  There are those rebels out there, but they are hard to find.  The training and health systems seem determined to squash them down.  I admire these kind champions even more now for swimming against the tide.

All is not lost and Rana does give us hope. She reminds us that there is “reciprocity in empathy.”  She shares positive experiences, too, including one with a Nurse Practitioner who demonstrates compassion for the death of her baby girl.  She explains how health professionals can “humbly witness suffering and offer support.”

Embedded in her harrowing story of experiencing a life-threatening event there is also an important love story about Rana’s relationship with her husband Randy.

“My bruised and discolored body was proof to him of what I had endured to stay with him,” she recounts.  I thought of my own husband and how both the author and I are graced with partners who granted us unconditional love during our health crises.  This deep, unwavering support can be healing too.

Dr. Rana Awdish’s In Shock covers a great amount of ground: shock at suddenly becoming gravely ill, losing her beloved baby girl and grieving for her previously healthy body.  There’s shock at how it feels to be a patient, shock at the resistance to her attempts to change the rigid medical culture to be more patient centred.

It is a dramatic and engaging read. I was spell bound until the very last page.  I might be predisposed to like this book as the mother of a son with a disability and now as a cancer patient. But this is a book for anybody who is a health professional or who has ever been – or might be – a patient (and that’s all of us).

I am heartened to have connected with Rana on Twitter and to discover she has a platform to preach for improved health communication as a speaker, writer and the Medical Director of Care Experience.  While it frustrates me that us simple layperson patients struggle to be heard, it does give me hope that doctors-as-patients are able to use their own stories to influence positive change.  Thank you Rana for gifting us your story.  I know it will make a difference in the world.

the tale of two appointments


At least I have a gown

Yesterday I had two separate diagnostic imaging appointments.  One was for an ultrasound at the cancer agency and the other was for a follow-up mammogram at a diagnostic imaging centre.  I finished treatment for breast cancer six months ago. Both appointments involved my poor beleaguered breasts, but otherwise the two experiences could not have been more different.

I sat in my therapist’s office today and deconstructed each appointment.  I’m figuring out why I am so desperate for kindness in health care settings. A chunk of that is my own stuff – I seek comfort when I’m feeling vulnerable.  But no matter my own personal reasons – I hope we can all agree that being mean to people in hospitals and clinics is not an acceptable option in Canada in 2017.

I present these two experiences to demonstrate how easy it is to be kind, how it does not take more time and how kindness is up to individuals and lack of kindness cannot be blamed on the ‘system.’  Never forget the system is made up of people.  Even in a health care culture that does not promote kindness for its own staff, there is opportunity for exceptional folks to go against culture to demonstrate caring for those they’ve committed to serving.

Example 1:
The Ultrasound 
1.  I waited among the bank of chairs in the hall, the first appointment of the day.  A gentleman pushing a laundry cart called down the hall to me: ‘Hello there!’  This perked me up and made me smile – scared, anxious me, sitting alone in the cancer hospital for my first post-cancer treatment scan.  Hello there mattered.

2.  A man came out of the ultrasound room.  A man to do my breast ultrasound!  But he had a warm smile and called me by name.  Come and get changed, he said and I’ll meet you in the room.  Put the gown on with the back open, he added before he disappeared. I was greeted warmly and clearly told what to do.  I appreciated the option of the gown. (This will make sense as you read my other experience).

3.  I changed and went into the room.  The lights were darkened and there was soft classical music playing.  The environment was comforting.

4.  The whole ultrasound took about half an hour.  This nice man talked to me the whole time.  He asked about my cancer treatment in a conversational kind of way.  He told me what he was doing as he was doing it and also shared with me what he was doing next. Providing information about what was happening and what to expect next was a great comfort. 

5.  He said – this might hurt.  Tell me if you feel pain.  He also said, ‘I’m almost done’ as he was wrapping up.  He told me when he left the room and why.  He wasn’t afraid to acknowledge my pain.  

6.  I was still wound tight as a top, clearly worried that all my cancer wasn’t gone.  He said to me, ‘don’t be worried.’  I knew full well he wasn’t allowed to tell me anything about my scan.  The results of the ultrasound would be faxed to my oncologist in a week (alas, it is the holidays, so I won’t find out the results until the new year).  But his ‘don’t be worried’ – even if it wasn’t true, validated my concern and was actually sweet.  He lessened my anxiety with his words.

I walked out feeling okay.  It wasn’t what this man did – it was how he did it.  And none of it took more time.  And, surprisingly to me, it did not matter one bit that he was a male technologist because of his compassionate approach.

And then, one hour later, in sharp contrast, I experienced the cold, the officious, the not-so-kind experience.

Example 2:
The Mammogram 
1.  I had a mammogram earlier this month, but had been called back for another appointment.  I asked the booking clerk when she phoned, ‘why do I have to come back?’  She said she didn’t know.  So I spent sleepless nights thinking they found more cancer.  Not telling me why I had to come in again seems cruel.

2.  My husband, having dropped our son off at school, met me at this appointment.  We sat in one crowded waiting room until I was called into another waiting room.  On the door it said:  Women only.  No men were allowed.  My husband sat on a bench outside the elevator for the next hour.  Not permitting my partner to accompany me is not patient or family friendly.  

3.  I sat in the second waiting room for a long time.  I was hoping I wouldn’t get the same technologist as before, as she was unfriendly. (Irony alert:  having a woman technologist does not guarantee a good experience).  It turns out I got another woman, who was equally as unfriendly.  I knew then unfriendly was the culture of this diagnostic imaging centre, and only the most exceptional clinicians would rise above it.

Then there was this sign:


I knew to expect it because I had been there before, so I was wise to them. I brought a cardigan to wear in the mammogram room.  At my last appointment, I had to strip from the waist up in front of the technologist and stood there, unnecessarily exposed, cold and topless.  This time I brought my own cover-up.

There’s so much to say about this sign.  First, the idea of being efficient by not encouraging gowns is baloney.  I sat in the waiting room for 40 minutes.  Forty minutes is plenty of time to change into a gown, isn’t it?  And for environmental impact?  Yes, I guess doing laundry is bad for the environment.  All my years of hating hospital gowns and I never would have guessed their solution to sterile gowns would be to take away the gown.  Yes, I could have taken a gown but this was clearly not encouraged.  There were other signs too, saying NO CELL PHONES.  There was a stereo on the floor, tuned into a Christmas music radio station that cut in and out as people walked past and played loud commercials.  The room was packed.  All of us women were lined up in rows in chairs, our fear palpable. Signage and physical space sets the tone for the whole patient experience.

4.  Once I was called in, I had to strip from the waist up.  I put my cardigan back on and pulled it tightly around me.  The woman did not introduce herself.  She did not tell me what she was going to do.  I said casually – it is too bad we don’t have gowns.  ‘Gowns just get in the way,’ she responded.  Oh.  Dignity starts with giving options to minimize patient nudity.  (Do I really have to say this?).

5.  I don’t want to discourage women from getting mammograms, but this mammogram hurt a lot.  She did tell me they wanted a closer picture of one part of my breast – which happened to be in an awkward position – close to under my arm.  I was jammed into the mammogram machine.  I whimpered as she tightened the machine around my breast – this one, my cancer side, still swollen with edema from radiation.  She did not acknowledge my pain and clamped down on it some more.  Not acknowledging pain does not help with suffering – in fact, it increases it.

6.  She must have taken ten more images.  Each time it hurt more.  I tried to breathe but I was told to hold my breath.  I was starting to feel dizzy and clammy.  I had no idea when she would be done.  Being left in the dark about what’s going on is anxiety-provoking in an already anxiety-provoking situation.

7.  Suddenly, it was mercifully over.  I stood in the corner, my back turned and got dressed. I was told to sit in the waiting room again, but I didn’t know why.  Another woman came about 20 minutes later and told me I could go.  I wasn’t informed what was to happen next or when my test results would be shared with me.  I got out of there as fast as I possibly could.  Knowing what will happen next does help.

I met my husband in the hall and he enveloped me in a hug.  What took so long?  Did they find something?  he asked, clearly alarmed.  I shook my head and said, just please take me home.

Listen, I don’t need emails or comments telling me I should have spoken up.  I know how to speak up.  I also know how to submit a complaint but I gotta tell you – a lot of good that’s done me in the past. Sometimes all we can do is put our head down and endure horrible situations.  I don’t always feel like being an advocate.  I am not always strong. That’s ok too.

But I hope I have demonstrated with these stories how one person can make a difference.  That the little things matter.  That what is not a big deal for health professionals (like topless patients) might be a big deal for us.

Those who work in health care can make a hard situation better by demonstrating compassion.  For my whole mammogram experience, all I can say is:  I know you can do better.

As Anne Lamott says, there are only two prayers:  Help me help me help me.  And thank you thank you thank you.  For the ultrasound technologist, I say thank you.  Thank you for making things a little bit easier for a scared, traumatized woman with breast cancer.  What you did mattered. In fact, all those so-called little things you did – that took no extra time at all – mattered to me a lot.  For you, I am tremendously grateful.  xo.

the radiation therapist & the patient


I am super proud of this article I co-authored with Amanda Bolderston for the Journal of Medical Imagining and Radiation Sciences.  It is called The Radiation Therapist and The Patient:  Epiphanies, Stories and Social Media.

It covers a lot of ground:  relationships in health care, how ‘complaints’ are handled by organizations and the power of social media.  I’m particularly chuffed because Amanda and I wrote this together – a health professional and a patient. It proves my theory that if we endeavour to see each other as human beings, and not merely titles…well, that’s where the magic happens.

a portrait of the patient experience

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

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

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

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

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

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

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

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

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


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