today my therapist fired me

You knew what you had to do…
and the road full of fallen
branches and stones.

But little by little…
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own.
-from Mary Oliver’s The Journey

Eighteen long months ago, cancer brought me to my knees.

In a desperate attempt to feel better I tried many things, including obsessive reading, soothing music, meditation, yoga, poetry class, art therapy, walking, podcasts, eating and not eating.  I searched for and found a good therapist. I was in such bad shape last year, wracked with panic, doom and depression, sometimes I saw her up to once a week.

I did hard inner work, including looking at trauma, my family of origin and all that shit.

Today my beloved therapist told me she’s confident I’ve done the work and it is okay if I stop seeing her. I’ve decided I’ll take her words as a compliment instead of a rejection.  I’ll move to maintenance mode and know she’s part of my safety net if I fall again.  There should not be shame in needing others.

Cancer healing is a slow and arduous process. I was privileged enough to take time off to recover and I can afford the costs of therapy, which not everybody can. I’m grateful for that.  Oncologists, insurance companies, employers, families – stop rushing people to get back to ‘normal.’  There is no more normal once you’ve had cancer.

Cancer is not a gift. I’m not fixed. I’m not better than ever. I will always be a person who had cancer.  I think I’ll mostly be okay. I’ll surely stumble again in my life – whether the cancer comes back or not – but I hope I now have the awareness and the tools to slowly get back up with love and support.

I wish administrators, clinicians and the world would realize that emotional healing is as important as medical treatment. Cancer is so much more than cutting out tumours. It is a life-rattling, life-altering experience. Maybe that’s why so many people in my life ran the other way when I was diagnosed. It is terrifying, both for me and my family and friends who steadfastly walked by my side.

Mental health matters for all kinds of recovery and it should be valued and funded appropriately. Take note, cancer agencies and cancer hospitals with skimpy budgets for the emotional care of patients.  If you don’t consider emotional care, you aren’t caring for patients.

I promise to use my big mouth and my modest platform to keep squawking about how crucial it is to consider the whole messy beautiful person in health care.  Health care is despairing today.  It needs an strong infusion of compassion and empathy – for patients, families and staff and physicians alike.  Let’s turn towards each other’s pain.

a good experience

boob squish

Today I had a dreaded mammogram appointment.  Dread, dread, dread.  Fret, fret, fret.  Ativan, ativan, ativan.  (Don’t worry, I only took one Ativan).

I have this theory if all us patients write detailed thank you notes to health professionals who care for us in exemplary ways – those who go ‘over and above’ – and we make sure we also send these notes to their managers, then maybe, just maybe, it will dawn on administrators what is important to patients.  If these health professionals are held up as role models, as identified by the patients, the people they signed up to serve, then the others who do not get recognized or worse, those who get complaints, will pale in comparison.  Then the health system will tip towards the champions and consider their actions as best practice.  The others will slowly fade away.  This is the vision that I dream in my dreams.

I once called this the Thank You Project.

Here is the letter I sent to the manager of the young lady who was my mammogram technologist today:

August 7, 2018

I wanted to write a note to say kudos to a mammography technologist named Sarah who did my mammogram this afternoon.

I was diagnosed and treated for breast cancer last year. I have had mammograms at other centres and have to say that the experience with Sarah today was over and beyond what I’ve experienced anywhere else.

Sarah was welcoming. She introduced herself by name, made great eye contact and gave me a warm smile, which immediately alleviated my anxiety. My last mammogram was excruciatingly painful, as my left breast still has quite a bit of edema from my treatments. I was quite nervous and woke up early this morning worrying about the appointment.

Sarah’s tone set me at ease. (The dim lights and soft music are nice touches in the waiting room too). I was happy to be offered a gown (other places don’t have them – you have to strip in front of the technologist, which is uncomfortable) and Sarah walked me through what was going to happen. She also let me know what she was doing as she was doing it, and checked on me as she went along to make sure I was okay. She apologized for the pain that was inflicted on my sore side.

Afterwards, she told me what the next steps were with the report, so I knew what to expect and how to follow up with my physician myself.

These all might seem like minor things but they are very important to patients. Us folks who have already had breast cancer arrive at follow up appointments carrying along the extra baggage of trauma from our treatment and having had the life-shaking experience of having had cancer. Often it was the mammogram that identified we had cancer to begin with, so going for mammograms reminds us of that dark and horrible time when we first got diagnosed. Of course, we are also scared that the mammogram might find that the cancer has come back – recurrence is a deep fear that never goes away.

Being treated by kind staff with respect and dignity helps alleviate some of our suffering. The experience with Sarah was about a thousand times better than the one I had at a private DI place a few months ago. After I saw Sarah, I felt calm and ok, not traumatized and rattled as had happened at the last place.

Please pass on my gratitude to Sarah for her professional and compassionate work with us vulnerable women and let her know she’s helping us heal by making a positive contribution to the well-being of cancer patients. She does this through her smile, her gentle approach and clear explanations. She’s a real rock star and your hospital – and us patients – are lucky to have her.

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.

my lady bits

Screen Shot 2018-03-09 at 3.52.36 PM

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

IMG_0077

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

Screen Shot 2018-01-11 at 3.27.32 PM

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

Screen Shot 2018-01-04 at 11.21.14 AM

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.