my small comfort list

mycanceremotions

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.

when breath becomes air

whenbreath

A long time ago, I used to write book reviews for the Winnipeg Free Press.  This is not a book review.  (If you’d like a good review of this book, click here).

Instead, this is my attempt at deconstructing the reasons I sobbed so hard last night when I read the last chapter of When Breath Becomes Air by Paul Kalanithi.

The book’s premise is well documented, so I’m not sharing any spoilers here.  A respected neurosurgery resident is diagnosed with lung cancer.  Eventually, he dies.  In between the diagnosis and the dying, he lives.  He continues his neurosurgery practice, has a baby with his wife and writes this beautiful book.  His wife Lucy pens the last chapter, which is the point at which I cried uncontrollably last night lying in bed, in the cloak of darkness, with my own husband sleeping by my side.

It took me two days to read this book, as I consumed it in two furious sessions.  This book is about answering a calling to go into health care.  It is about epiphanies mid-residency about the humanity of health care.  It is a conversation about what is the value of a life.  It is about facing death, not unafraid, but with one’s eyes wide open.  This book is mostly about living while one is dying.  And it is a bittersweet reminder that we are all dying, my friends.  Paul’s wife, Lucy, said it best:

Although these last few years have been wrenching and difficult – sometimes almost impossible – they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude.

I’ve marked up my own copy of this book, and plan to reference it when I speak to medical students in February about the experience of having a child with a disability, which also includes the common experiences of grief, humanity and gratitude.  I want to pass all Paul’s wisdom on.

My hope for this little book is that it becomes required reading for all health professional students, similar to The Spirit Catches You.  Dr. Paul Kalanithi then will live on and on through his words, through the students he inspires, through the patients he saved, through his own daughter and through this expression of his love.

 

 

 

 

girl in a band – the book

girlinabandI bought Kim Gordon’s Girl in a Band book in the futile hope that I would understand my eldest son.  He’s a boy in a punk band in LA and is currently on tour somewhere in the midwest.

I have never been a girl in a band, although I was once married to a man in a band, and spent many evenings sitting at a bar at 2 am with the other band spouses waiting for the band to take the stage.  I was their occasional studio accordion player and co-wrote songs like ‘How Does it Feel to Be Neil’ (this was a song about my own dad, who is a very interesting guy).

I do stand on stage now, sometimes, but my audience isn’t a mosh pit.  It is a room full of  Emergency Room doctors or pharmacists.   What Kim says about performing was fascinating to me:

Greil Marcus says, “people pay money to see others believe in themselves.”  Meaning, the more chance you can fall down in public, the more value the culture places on what you do.

Kim says that performing is fearless.  Regarding public speaking, I always say there’s a fine line between being stupid and brave.  I try to err on the brave side of things but don’t always succeed.  But yes, the awe bestowed on people who step on a stage is due to that risk that we might fail in an epic, very public way.  This is everybody’s worst nightmare (and in fact, I have my own recurring nightmare that I’ve forgotten my speaking notes at an important presentation, and that I can’t remember what I wanted to say).  Allowing yourself to be vulnerable in front of a group of strangers is a high risk, high reward thing to do for a living.

I did glean one insight about my son from the book.  He’s a boy who left home at age 18 and then moved even farther from home, thousands of miles away, two years later.

Kim Gordon says:  I couldn’t find out who I really was until I left LA and my family.  Until that day arrived, I was just waiting, suspended.  Families are like little villages.  You know where everything is, you know how everything works, your identity is fixed, and you really can’t leave or connect with anything or anybody outside, until you are physically no longer there.

To me, this says to those hanging onto your adult children, it is time to let them go.  It will be the most painful thing you have ever done and it doesn’t mean you will stop being a parent. But, as the inspirational saying says, you’ve given them roots and now it is time to grant them their wings so they can fly.

I stopped writing book reviews many years ago.  (Here’s a real review).  I will say that Girl in a Band is a factual and chronological book.  I was craving to discover how it felt to be a girl in a band, but I didn’t ever find out.  I learned the steps it takes to become a successful band, and Kim did provide passionate descriptions of Kurt Cobain and the sad break up with her husband.  But it was as if she was still in the thick of things with the dissolving of both her band and her marriage, and she hadn’t been given the space yet to reflect.  Perhaps her next book will provide those insights.  In the meantime, if you are a girl in a band, or a Sonic Youth fan, you will like this book.  For the rest of us, I’d say garnering one or two nuggets from any writing, as I did, is reason enough to pick up a book and just read.

 

after birth

afterbirth

Elisa Albert strips all the posturing and candy coating off motherhood.  Her novel After Birth is the punk rock gospel of being a mom – the fuck you to everybody who wants to hear a chirpy ‘everything is fine!’ after a woman gives birth.

Everything is not fine.  Early motherhood (in particular) is messy and leaky and cranky.  It is unbearable loneliness complemented by sleep deprivation,  It is also full of so much love that your heart actually does burst inside the cavity of your body.

After Birth talks about how motherhood actually feels.  What I found astounding is that Elisa Albert wrote a book about a time when in my journal I have scribbles like:  rt side, nursed x 12 mins.  2 BMs.  40 min nap.  bananas, oj, milk.  What do I recall about early motherhood?  Nearly nothing.  One kid couldn’t latch on and I endured excruciating pain every time he chomped down on me.  Another baby never slept and nursed all night long.  And yet another one sent me into deep grief with the diagnosis of his disability.  And yet I loved (love) these children with every cell in my body.  Eventually I came out of these dark places.  BUT THIS IS ALL I CAN REMEMBER.

Captured in the fading passages of Elisa Albert’s testament to motherhood is this:
So whose gonna write about it if everybody doing it is lost forever within it?

After Birth somehow transcends this sleep-deprived, life-changing, nipple-chomping memory loss.  Send it as a gift to every new mom you know.  Let them know they are not alone.

 

the book pile

Since my daughter moved out, she’s been alone on her day off from her job at the bakery. She can’t afford Internet or cable, and there’s only so much cleaning one can do in a 500 square foot garage suite. The other day, she unexpectedly told me, “I want to read more books.”

This is so old school and I was delighted.  I gifted her with The Gone Girl by Gillian Flynn and she’s happily giving me daily plot updates.

Since I dumped Facebook, I’ve been reading more lately too. Here is what has passed through my book pile:

Close your eyes, hold your hands by Chris Bohjalian – A wayward teen, on her own after a nuclear disaster. Compelling and sympathetic.

House in the Sky by Amanda Lindout and Sarah Corbett – I was scared to read this, but someone I trusted recommended it. The true story about the kidnapping of a journalist. Terrifying but surprisingly full of hope and faith.

I am having so much fun here without you by Courtney Maum – well, I read it, hoping to warm to the protagonist. But I hated that guy right to the bitter end.

The Vacationers by Emma Straub – wow, this was lite (not even light), so I read it, yes, on vacation. A family drama set on a holiday in Spain.

The Year She Left Us by Kathryn Ma – another story about troubled girl, told from various points of view. At its heart, it had the interesting theme of international adoption.

The Husband’s Secret by Liane Moriarty – I was embarrassed to have this in my book pile. The cover is cutesy, and all covered in pink flowers. Once I got over my pretention about this book, I liked it. It was set in Sydney, and was a pleasant read with three different story lines that slowly begin to intersect in mostly unexpected ways.