I Wrote A Book

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The Late Great Audre Lorde

This is the story of my book. Bird’s Eye View is a collection of stories of my life lived in health care – from a failed nursing student, to a health care bureaucrat, to the mom of a child with a disability to a patient and family engagement consultant to a woman living with breast cancer.  It is written for patients + families and anybody who works in health care – clinicians, staff, health faculty students and administrators.  It is for anybody who has an inkling that stories can change the world.

I started writing this book two and a half years ago after I left my job at a children’s hospital.  I was in deep grief when I resigned, but everybody said to me:  Now you can work on your book!  So that’s what I did for three whole months.  Then BAM I got diagnosed with breast cancer.  That was kind of a bummer and shut down the book action for a very long time.

During those dark hours, I barely managed to keep a journal, but I am thankful I did.  I called my journal Grace Period although I was hardly graceful.  I was what Arthur Frank calls in The Wounded Storyteller a narrative wreck.

I finished treatment and waited out my narrative wreck.  You may have read some of my narrative wreck pieces here on my blog. I was so neck-deep in crisis and grief that I couldn’t continue the book.  Plus, the book was about kindness and compassion in health care and to be honest, as a cancer patient, I wasn’t being treated with much kindness or compassion in health care.

I put the book aside and took poetry classes, regularly visited my therapist, tried meditation, did some paid consulting work and went for many long walks.

A year and a half after I was diagnosed I could finally bear to look at the book again.  Since some time had passed, I started writing more reflective chapters about having cancer. I added them to the words I had already written about being the mom of a kid with a disability.  The caregiver had became the patient and this was hard stuff for me to reconcile.

In January I finished a manuscript, all 100,000 words of it.  I started shopping around for a publisher and received a number of rejections.  This was not unexpected but it sure was disheartening.  Some of the rejections were plain mean.  One Toronto publisher said: I passed your manuscript around to our editors and there was no enthusiasm for it.  Ouch.

After every rejection, I paused to lick my wounds.  The Toronto-publisher route was clearly not working well for me.  Then I was introduced to Hambone Publishing in Australia.

I’ll leave the Hambone story for another time.  It is a beautiful tale of serendipity and connection. I will say they are a perfect fit for me.  The manuscript is with my editor now and she is doing the hard work of a structural edit. 100,000 words is too long. I’m very pleased that I found a fabulous illustrator – she is a local Vancouver artist – for the book’s cover.

I’m going to do this book my way.  I’m committed to the Patients Included principles for events.  I will bring other caregivers and patients along with me on this ride.

Bird’s Eye View will be released in the fall of 2019.  If you would like to follow along with my book adventures, fill out the form here to get on my mailing list.  You can also follow @birdseyeviewbook on Instagram.

I’m doing the thing I’m most afraid of, and I’m both scared and excited all at the same time.  xo.

 

the unwinding of the miracle

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Whenever I’ve been fraught with anxiety, particularly since the stupid cancer arrived, my youngest son comes up to me and says firmly:  Mom. Sushi, bath and reading.

My boy knows what calms me and reading is one of those things.  I made a list of books that soothed me around my cancer treatment time and I’m going to add The Unwinding of the Miracle by Julie Yip-Williams to this group of illustrious books.

The Unwinding of the Miracle book began as a blog, which of course sparks hope to those of us who write about our own cancers.  It saddens me, though, when I realize how many books were published posthumously – like Julie’s book, and Nina Rigg’s The Bright Hour and Paul Kalanithi’s When Breath Becomes Air.  I hope the authors got to see their book in some sort of form – a draft of a cover, or a printed manuscript – before they left this world.

I am still drawn to books about cancer two years after my diagnosis.  This might seem weird to non-cancer people.  As one relative said to me:  why can’t you just put it behind you?  I can’t put it behind me.  It is part of me now.  We all integrate cancer into our identities in some way, even those people who seem to be ‘over it.’ (They aren’t over it.  They just don’t talk to you about it). Reading stories about cancer, especially metastatic cancer, helps me shine a light on the Bogeyman.

The Unwinding of a Miracle is both a memoir and a commentary on dying.  I read the first few chapters impatiently, hoping the author would get to deeper reflections beyond her chronological story.  Don’t get me wrong, her story is fascinating – Julie was born blind in Vietnam, arrived in Hong Kong on a boat as a refugee when she was three years old and eventually settled in California.  Hers is the American dream story – she overcame the struggles of her childhood, went to Harvard Law School and practiced as a lawyer in New York City.  She got married, had two children and lived an affluent life in Brooklyn.  But then at age 37, she got colon cancer.

When I read a book, as in real life, I like to cut through the chit chat to get to what’s important.  I’m glad I didn’t give up on The Unwinding of the Miracle, because my perseverance paid off.   The first chapters are mostly a re-telling of Julie’s life up until cancer.  The rest of the book is a deep dive into what I call what really matters in life.

I’m always searching for commentary on the patient experience in books about cancer, and Julie does share some of that.  Her diagnosis occurs in a sketchy hospital far from home, where she’s travelled for a family wedding.  She calls the physicians there ‘dubious’ and arranges to get transferred to a ‘more reputable’ hospital.  This was a very American reminder of how having good insurance and money gets you better care (in Canada, there’s no transferring around hospitals, no matter how wealthy you are).

She speaks candidly about her forays into alternative medicine, “…I could roll the dice with traditional Chinese medicine, which after all has been around for thousands of years and is a part of my noble Chinese heritage.”  Those who mock patients for searching for complementary treatments will gain a greater understanding of why patients stray into alternatives.  (It is because we are afraid, we feel ignored by our doctors, we have lost trust in the health care system, we go through bouts of feeling desperate to do anything to live just a little bit longer).

I admire of Julie’s telling of what she terms ‘her darkness’ that hits her two years after diagnosis, as she’s deep into Stage IV cancer. “There is a natural, intuitive fear of darkness, people who are gripped by it are ashamed to speak of it,” she says.  But speak of it she does.  The book turns here from a chronological tale to one that is thoughtful and reflective.  I imagine this mirrored Julie’s own experience having cancer, which can flip flop between denial and to trying to stay on this side of cheery to dark depression and eventual sad acceptance.

Julie shares many jewels in the caves of suffering (as David Gilbert has termed) in her book.  These jewels are not necessarily shiny or sparkly but they are hard-fought jewels, hard and dusty.

I find and continue to find delusion, fake optimism, and forced cheer in the face of a devastating diagnosis where death and all the fears that come with it must be avoided at all costs.

If you aren’t afraid to consider death, if you believe that people facing death can offer up jewels in the midst of their suffering, then The Unwinding of the Miracle is for you.  It isn’t a light book but it is an important book.  Julie Yip-Williams’ legacy is her story, her children and how she lived an unflinching and authentic life, right up until the end.

 

my small comfort list

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I’m drifting away from my breast cancer diagnosis and treatment from two years ago. Time gives me the ability to reflect, although I can easily be thrown back into the well of despair that epitomized that dark time in my life.

Sometimes I get messages from other women who have been diagnosed with breast cancer. I wish I could tell them: do this one thing and you will feel better. Alas, I have no one thing and no easy solutions. Healing is highly individual and one size sadly does not fit all.

I tried many things to calm the f*ck down. This is a list of the things I attempted over the past two years to make myself feel better. If you are going through a dark time for whatever reason, you will make your own list. It won’t look like mine. I tried a lot of things on for size. Maybe one of these ideas will give a wee bit of comfort, even for a little while as you find your own way.

1. Walks Outside
I promised my daughter that I’d walk every day. At first I begrudgingly kept that promise, then I became obsessed with getting my steps, but now I’ve settled down and look forward to my daily walks. I actually allow myself to enjoy the combination of fresh air, nature, movement and time to myself.

2. Mental Health Therapy
I tried the public mental health system first, but I was only was assigned four appointments at the Cancer Agency. Then I had to find my own private therapist. Asking around for someone who understood cancer stuff helped. Anywhere that advertises cancer supportive care would fit that bill, like Callanish or Inspire Health in Vancouver, or Wellspring elsewhere in Canada.  Do not be surprised like I was that our public system does not offer these services.  Publicly funded oncology care is medical, not holistic.

3. Small Comforts
I started scratching around for small comforts, like stopping for a coffee before oncology appointments and going for cheap sushi and to the bookstore afterwards as a little gift to myself. This helped me endure rude receptionists and cold oncologists if I knew I was going to treat myself well afterwards even if others did not.

4. Cancer Retreat
This is about finding ‘peer support’ or what I call friendships with others going through the same thing. I wrote about my experience at a cancer retreat here. Many retreats have subsidies for registrations to help you access them and if you can manage to take some time away. It is an investment in you.

5. Meditation
I’m no meditation guru, but I went to a few classes run by the Calm Monkey and picked up some basic tips. I used meditation techniques when I was under the radiation machine, waiting for the doctor to come into the treatment room or being squished in a mammogram device. Breathing and counting helped me calm down, even a little bit. I think it gave me back some control. Here is a quick and fast version that I watch in the mornings to start my day.

6. Music
When I drove to oncology appointments, I played the Tragically Hip really really loud on the car stereo. Yeah, Gord Downie had cancer and there is something about his heartfelt pre-cancer lyrics that speak to me. Courage, my word, it didn’t come, it doesn’t matter Courage, it couldn’t come at a worse time. Find your own Gord Downie (or borrow him.  He’s great).

7. Water
I was lucky enough to go snorkeling after my treatment. Sometimes when I can’t fall asleep at night, I think of that feeling of floating with the fishes. To re-enact that feeling, I tried out a few sessions at the Float House.

8. Love of Good People
I struggle to feel myself worthy of love. (Long story). So I purposely lean into hugs from people who love me unconditionally and not to push them away. This means embracing love from my husband and children, taking phone calls from my open-hearted, non-advice-giving friends who make space for the listening and I try to fully accept kind words from others. (This means I had to also get rid of the love of bad people who hurt me, which wasn’t exactly comforting but it was a necessary evil).

9. Podcasts
I listen to podcasts on my walks. Mostly the Good Life Project and Everything Happens. There’s a podcast out there for you if you are like me and struggle with finishing an entire book.

10. Mindfulness
I like to watch this video. I also sometimes think: ‘stay in the moment, this is all you have,’ so I don’t zoom ahead with fret about the future.

11. Purposely Seeking Joy
Yeah, I’m one of those people who push away joy too. I have to purposely seek it out and pause to enjoy it (see #10). Joy mostly resides in the little moments, like my son’s laugh or the birds chirping in the tree, which are always there for me if I just pause to pay attention.

12. Writing
Obviously I wrote a lot in all my various states on this blog. I also took a poetry class. This was healing for me, especially if I found out that my words were helpful to other people. You don’t have to share or publish your writing for it to be useful to you.

13. Reading
I kept a list of books that helped me. The Emperor of all Maladies helped me understand the stupid cancer. Audre Lorde’s work about speaking up was very important to me. Like music, find writers who speak to you.

14. Quotes
If I didn’t have the energy to read a whole book, I’d glom onto quotes from podcasts or Instagram or Twitter, like those from dearly missed @ninariggs, @cultperfectmoms and @adamslisa.

15. Art
I’m no visual artist, but my friend Lelainia kindly spent the day with me teaching me how to collage my photos from my radiation therapy days. This was extremely healing for me. In lieu of actually creating art, looking at art helps too, which is why bookstores, art galleries and museums are some of my ‘calm the f*ck down’ places to go.

16. Distraction
I was mostly too upset to be distracted. The geographical cure helps if you can swing it – even short road trip or a 20 minute ferry ride to Bowen Island was comforting. My friends kindly distracted me for taking me out for nice meals or meeting me for a drink too. Accept kind distractions.

17. Mindless Entertainment
Related to distraction is mindless entertainment. Here’s where I actually take a bubble bath and read an US magazine and enjoy it. (Note that bubble baths are buried in about 50 other things I do and bubble baths are not the only solution as the self-care movement wants you to think). Movies, Netflix (Ali Wong!) and plays work this way too. I can only watch comedies now, go figure. It is important for me to laugh.

18. Medication
Yeah, I’ll be honest here. If I’m really freaking out, I’ll take a prescribed Ativan. There’s nothing wrong with asking your physician for medicinal help. I also shamelessly like a glass (or two) of a full-bodied red wine. Marijuana has never done it for me, but I know of others who use it and bonus, it is legal now in Canada!

19. Being OK with Feeling Shitty
In the end, sometimes life is just shitty. My therapist said: maybe it is okay to feel sad or upset or angry. I used to shove those hard emotions away. Now I can say: this is okay. It will pass. I won’t always feel this way.

The wise Kimmy Schmidt said: “Do you think you can handle this for 10 more seconds? I learned a long time ago that a person can stand just about anything for 10 seconds, then you just start on a new 10 seconds. All you have to do is take it 10 seconds at a time.”

Get through the first ten seconds and then the second…sometimes putting your head down and getting through one step at a time is all you can do. Sometimes you have to lie down and take a rest. Mostly, cut yourself some slack.

To the women who have approached me who are in their own dark time, I want to say this: accumulate your own small comforts. You are deserving of finding peace in your hearts, to temper the suffering life offers us, even for a few moments.

Ps: I’ve written about the whole self-care/self-compassion thing here: Leaning Out and Beyond Bubble Baths.

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.

books, glorious books

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I have a long history of leaning on the written word to navigate turbulent times. When I first became a mother 24 long years ago, Dr. William Sears’ The Baby Book was my Dr. Spock of the 1990’s. Ariel Gore’s The Hip Mama Survival Guide and Anne Lamott’s Operating Instructions also lived dog-eared beside my bed.

After my first marriage split up, I tapped Anne Lamott once again, lugging her Traveling Mercies in my suitcase when I travelled to Norway with my two young kids. This book served as a salve for my single mom pain.

Martha Beck’s Expecting Adam was one of the only books published 14 years ago about having a baby with Down syndrome. It gave me solace when the baby I expected was not the baby I got. Roadmap to Holland by Jennifer Graf Groneberg offered me a crucial guide to being a new kind of mother. Later, Andrew Solomon’s Far from the Tree offered me important perspective on disability.  His book is a well-researched literary encyclopedia of parenting a child with differences. (I wrote about crushing on Andrew Solomon here). As my boy has gotten older, I have cherished Ian Brown’s musings on the value of people with disabilities in his The Boy in the Moon.

For general woe, I’ve sent Broken Open by Elizabeth Lesser to many a friend who is going through a rough time.   Books by strong women always perk me up. Cheryl Strayed’s Wild and Elizabeth Gilbert’s Eat Love Pray were both books before they were mainstream movies and I gobbled them up in the early days of my second marriage.

Cancer arrived, uninvited and unwelcome, in my left breast earlier this year. In an attempt to comfort myself, I have accumulated too many cancer memoirs, most of which I haven’t even cracked open. I’ve ventured into a few, but found them too cheery, too preachy or too prescriptive. I’ve piled them away in my bookcases for later.

I keep trying on the written word for size. The cancer agency happens to be close to an independent bookstore, so I have spent many hours loitering in the aisles between radiation treatments and oncologist appointments.

These are my favourite books I’ve read over the past months. Many of them came at me sideways, as they aren’t necessarily full-on cancer memoirs, but they contained sentiments that touched on issues that have become suddenly important to me.

Rising Strong by Brene Brown – I’m desperate to gain some resiliency and Brene’s TEDx Talk about vulnerability remains one of my favourite TED talks of all time.

The Bright Hour by Nina Riggs (I reviewed this for The Underbelly, here). Although it is called A Memoir of Living and Dying, I found it to be a beautifully hopeful book.

Ditto with Paul Kalanithi’s When Breath Becomes Air, a tender and tough book about a neurosurgeon who happens to have cancer.  I read it a year before I was diagnosed, but recently revisited it again.

Hungry by Roxane Gay – helped me start to forgive my body as I’ve struggled with the body issues that have accompanied this damn cancer.

Birds, Art, Life – Kyo Maclear’s book was deeply soothing to me as I was searching for grace while waiting for treatment. I wrote about it here.

Teva Harrison’s In-Between Days is both funny and telling – a creative graphic memoir about living with metastatic breast cancer.

The Emperor of all Maladies by Siddhartha Mukherjee is an impressive, Pulitzer Prize-winning biography of all things cancer, useful as I am trying my damnest to understand this elusive disease. This book is painful to read if you actually do have cancer, but well worth the effort.

Illness as a Metaphor by Susan Sontag is a classic book that analyzes the tired old ‘cancer as a battle’ analogies and got me starting to ponder my new identity as a sick person.

I’m still trying to figure out so much. I’m a nerdy library girl at heart and reading books is my way of gathering information and soothing myself.  Lately, I have remembered that books have always been my friends.

What books provided comfort when you went through dark times? I’d love to add to my collection – please consider leaving a comment with your recommendations.