our sisterhood of pain

IMG_1414It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. -Audre Lorde

I bring my red Moleskine notebook to every oncologist appointment. In it I’ve carefully recorded the date and the questions I need answered. I haven’t seen my official oncologist in months. I catch a glimpse of her in the staff room and hallway, but she doesn’t see me. Instead, I get the family physician in the clinic or the oncologist resident. I know this is how it works. I’m post-treatment with a boring low-grade cancer – and I don’t want to be an interesting case for an oncologist – but I can’t help but feel unimportant by this rejection.

Regardless of who I see, I try to be organized and look put together for whoever shows up in the treatment room. If I’m feeling stronger and in self-advocating mode, I’m sure to dress up and have make-up on. Is it wrong of me to do this, to lean on my privilege? I’ve learned over the years that I get listened to and taken seriously by clinicians if I look and act like them as much as possible.

I once heard of a mom who was a First Nations woman who had a kid with a disability. Every time she went to the children’s hospital, she dressed up in a (goddamn) business suit to purposely overcompensate for the shocking power inequities between patients/families and health care professionals. This power imbalance was exacerbated by the fact she was Indigenous. Is this okay? No. No it is not okay.

The worst part is that many health professionals don’t even realize they contribute to these imbalances with their obliviousness to their own privilege. I wrote a review of the brilliant book When The Spirit Catches You, which highlights this concept and is a must-read for anyone working in health care.

I don’t need someone to give me a voice. I already have a voice. I need someone to listen. If I have to get dressed up to be heard, I get dressed up. Should I be able to present disheveled in my sweatpants? I should, but then I’ll be judged. This isn’t paranoia; it is my reality.

I’ve been written off as a ‘hysterical mom’ many times when I’ve accompanied my son to the clinic or hospital. I’m careful not to show emotion – to not cry or to raise my voice, even if I’m upset. Recently, I asked a pediatric audiologist to ‘please speak to me more respectfully’ so she would stop her sighing and eye-rolling at my questions. I shouldn’t have to ask to be treated respectfully. My standards are not too high. As a patient or family member, I wish to be treated by health professionals with the same common courtesy that is afforded to a colleague.

(Oh wait, health professionals don’t necessarily treat each other courteously. Scratch that concept). Think of me as someone you love, then, if that helps. As your sister, wife or mom. No matter how well-dressed or well-spoken (or not) I am. This Cleveland Clinic classic video highlights this empathetic approach.

Recently, there was yet another article published in a medical journal written by a physician who became a patient. I appreciate the author’s humbleness and recognition of his own privilege. Here is a male oncologist/patient, asking for the receptionist to smile. I’ve been calling for receptionists smile for years, but who am I? I am just another layperson patient, a middle-aged breast cancer patient, a mom of a kid with Down syndrome. I do not have an oncologist’s platform.  Health care loves to listen to doctors.  To regular people, not so much.  Therein lies the problem.

It is important to note that I am white, well-off economically, generally well-spoken and I have worked in health care administration my entire career – specifically in patient and family experience for the past 13 years. Alas, I am also a woman and a patient, which knocks me down a few rungs on the health care ladder of status. I struggle to be taken seriously.

There is starting to be stories about how much of this power imbalance is due to gender. I applaud these stories. May they continue to be told.

I wrote about my own ‘lady’ experience in March, being brought to the Emergency Room by ambulance in excruciating ovarian pain. Joe Fassler writes about his wife’s similar story here in The Atlantic.  Sarah Frey also recently published this piece on gender-based health care for CBC news, and Jennifer Brea’s important film Unrest is about myalgic encephalomyelitis, a neglected women’s issue. There’s so much more to say about this gender imbalance in our sisterhood of pain.

The great imbalances reach other people too – those in the LGBTQI2-S community, those with disabilities, those from a different race or culture – I mean, I could go on and on. What does it take to be listened to by the health care system? Do we have to be exactly like health professionals to not get diminished or dismissed? Mostly yes, but sometimes no.  Let me share a positive example, my recent little ray of light.

I had my oncology appointment on Thursday. While I approached the day with oncology dread – waking up at 5 am with my head whirling; carefully preparing my questions in my little notebook; driving white-knuckled to the appointment; avoiding parking at the cancer hospital (the parkade there sends me into a medical PTSD tailspin); taking an Ativan to calm the hell down (an Ativan prescribed to me by an oncologist – that I only take when I have a health care appointment #irony); picking up a Starbucks to bring with me to the clinic as a crutch/my armor; walking in like my friend Isabel taught me, like I am The Queen; and asking the medical assistant not to tell me how much I weigh (the very first thing they do there is weigh me, my least favourite activity on earth).

Still, despite my many strategies to stay strong, I sat in the windowless, joyless clinic room, waiting for a knock on the door, feeling small, hunched over and nervously picking at my fingers until my hangnails bled.

In the end, the person who knocked at the door was a senior oncology resident, a pleasant man who forgot to introduce himself, but who was otherwise lovely. We had an actual conversation about my four questions in my notebook – a back and forth – where I asked and he shared information and options. I listened and then we discussed resolutions. I felt as if we did tackled all my questions together, in a most collaborative way.

I left this follow-up appointment feeling greatly relieved. If this doctor thought I was hysterical or difficult, he didn’t show it. If he was rushed or having a bad day, I didn’t know. I appreciated his careful listening and consideration. It was a good experience. Yet it was extraordinary in the fact that a positive patient experience is exceedingly rare. I felt treated with courtesy, compassion, validated, understood and listened to. This is how it should be, no matter one’s gender, gender identity, ethnicity, citizenship, religion, race, disability, orientation, dress, eloquence or otherwise. (My apologies if I’ve missed anybody or used the wrong terms – I’m still learning too).

It is humanity we all so crave from the health care system – no matter – or maybe because of – our different expressions of human identity. We are all people first. I’ll keep on squawking about health care and I hope you will too. Use your voice. I’ll end with another quote by the glorious Audre Lorde, who always says it best:

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.

two steps backwards

See when it starts to fall apart
Man, it really falls apart – Tragically Hip

I am watching across Canada as the patient and family engagement movement in hospital settings is taking two steps backwards.  Councils are being disbanded, patient and family staff members (whether they are paid or unpaid) are resigning or being forced out of positions and are being replaced with clinicians.

There is a real fragility that underlies the patient engagement movement.  If patients and families behave themselves, then all is fine.  The minute there is a change in leadership, or something gets hard – like an ethical issue comes up or there is conflict – then BOOM it is over.

It seems as if this movement is so precarious that it can only survive when things are going well.  I define going well as: patients and families mirror their behaviour as close as possible to the behaviour of clinicians and administrators. We must dress like them, talk like them, show up when they tell us to and agree with them. Of course, this erases any hope for diversity and leaves the pool of engaged patients university-educated, articulate and economically well-off, just like the clinicians and administrators themselves.  Patient engagement quickly becomes doomed the moment there’s a sniff of any difference or contention.

There is now a trend throughout the country to replace paid families or patients with health care clinicians in patient engagement roles.  I think this is because:

  • The patient/family engagement movement has become too successful.  We have amassed too much power in the eyes of administrators.  This, ironically, means that engagement has become no longer tokenistic and is finally meaningful.  But to have power you have to take power – and administrators and clinicians simply aren’t willing to give their power away.
  • Paid family members and volunteers are not ‘professionals’ (nor should they be, especially if people are truly looking for diversity) but health care is built on the structure of professionalism.  Having laypeople make decisions in ways that are not tokenistic is just too much for most bureaucrats.
  • The way patients/families are treated at the organizational level mirrors the way they are treated at the point of care.  If there is bad morale and low patient satisfaction at the bedside, then efforts in patient engagement at the organizational level will suffer too (and vice-versa).
  • Many people in senior leader positions do not understand the role of families/patients in organizations.  They might understand the bedside engagement, but the patients in organizations concept is new and poorly understood.
  • Health care culture is also exceedingly slow to change to new ways of doing things.  Patient engagement at the organizational level shakes the status quo. In the Canadian health care system, the status quo does not wish to be shaken.
  • Patients or families in paid positions, on councils or committees do not have a common job description, standard training or defined core competencies. In other words, they are not regulated in any way.  The health care environment is one that demands structure and regulation in order to gain credibility and respect.
  • Patient engagement still butts up against some professions and threatens them (I’m thinking of those clinicians who think it is their job to advocate for patients, not the job of patients and families themselves).

Replacing patient and families with clinicians swings the pendulum back to where we were 15 years ago.  Clinicians are now speaking for us instead of creating environments where we can speak for ourselves.

I’ve laid out the reasons for this problem and will continue to ponder solutions.  I would suggest that patients and families first abandon any tokenistic work right now and search for the rare environments where true engagement is still happening.  Be picky about how you spend your time.

For instance, my colleague Isabel Jordan has found success as a family partner in the area of research.  While some hospitals still have the reputation of being champions in patient and family centred care, meaningful engagement in the hospital world is becoming rare.  If you find a place where you are being treated as a respectful partner, hang onto them tightly.  These scarce places seem to be going the way of the dinosaur.

It is time for patients and families to regroup and rise up again on our own and abandon the shackles of the health care system.  How do we do this?  I think the answer lies outside of the system, not within it.

One thing we can do is to keep telling our stories on our own platforms instead of politely waiting in the wings for conferences, hospitals or universities to extend us invitations to share our experiences.   Use your voice now.  While the system now seems to prefer that professionals take over speaking for us, never let them steal your story.  Your story is the one thing that is yours. Protect it fiercely.  Now is the time for us to take our power back and we will rise up again, one story at a time.   xo.

Edited to add:  I’ve written about both best practice + poor experiences in patient engagement here: here, here, here, here, here, here, here, herehere, here. 

as we all carry on

Podcast-V2

I’ve managed to wrench myself from social media (although I cannot escape the clutches of Instagram) and this has freed up mental time during my daily walks.  If I’m in a beautiful setting, I walk listening to nothing – only the rustle of the leaves and the chirping of the spring birds.  If I’m relegated to strolling along an ugly urban area, podcasts keep me company.

White Coat, Black Art on CBC with Dr. Brian Goldman is in my podcast feed.  I was thrilled last week to hear my friend and colleague Isabel Jordan interviewed for an episode about PTSD in hospital settings.  She was clear and eloquent about the PTSD that has haunted her since her son’s PICU admission years ago.  This episode covers a lot of important ground: the painful procedures inflicted on patients; the lack of pain management techniques used by hospital staff; the need for mental health support for all family members who bear witness to traumatic hospital situations; and the associated lack of public mental health services in Canada. Isabel is especially poignant in her description of how her rare disease community has helped to heal her.

 Life isn’t just about being patched up.  It’s carrying on afterwards.
                                                                                                         – Isabel Jordan

I truly believe some of the trauma that happens in the hospital could be avoided with a more empathetic attitude.  I, too, have held down my young son with a disability while he was getting blood drawn. I wince at this memory, which surely has been etched deeply in his head.  It does not have to be this way.  Discovering EMLA, a numbing cream that I apply before his blood draw, was revolutionary to his experience.  Another mom told me about numbing creams  – not one health professional has mentioned it to me – ever – in the past 15 years.  (Check out the fabulous It Doesn’t Have to Hurt website for tips on pain management for children).  Clinicians, ask yourself:  Does it always have to hurt?

Us adults experience pain and trauma in the hospital too.  I have written about my experiences with health care on this blog and in a recent guest editorial with the Journal of Family Nursing.  The Affronts to My Human Body essay outlines my accumulations of scars throughout the years and during my recent treatment for breast cancer.

I know many hospital procedures are painful and this is sometimes unavoidable.  But I wonder how much pain is avoidable with a more compassionate approach.  The podcast Everything Happens’ last episode called Can You Hear Me Now talks about empathy in health care.  It offers a brilliant interview with Alan Alda and Kate Bowler.  There’s too much good stuff here to quote.  Just listen to the episode, especially if you work in health care.

Alan talks about connection, plain language and the curse of knowledge in medicine.  If I didn’t have a crush on him when I was a teenager watching Hawkeye Pierce in M*A*S*H episodes, I certainly do now.

At the end of the podcast, Alan turns the table and interviews Kate.  He asks her why she wrote her book and why she does this podcast.  She answers:

What is it like to live after you give up on some of your most deeply cherished lies, like everything is going to work out.  Are there still true and beautiful things that we can still learn in the dark?

To me, this echoes Isabel’s sentiment about carrying on after the trauma and through the pain.  Cheers to those who give voice to the stories that happen in the dark – through being brave enough to be interviewed, or by hosting podcasts or writing or just simply by being a listening presence and not turning away from the pain.  I think both sharing and listening to stories helps us all, as Ram Dass says, to keep walking each other home.  xo.

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.

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.

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.