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.

how words speak to me

Louise Kinross is the editor of the fabulous blog from Holland Bloorview Kids Rehabilitation in Toronto.   It is called Bloom.    Louise has always been very supportive of me as a writer, and I’ve been interviewed and published in Bloom a few times.  In fact, she published The Invisible Mom, which was picked up by Huffington Post, and from there I was contacted by the editor of the New York Times Motherlode blog last year, who was interested in a query from me.  From that, Far From My Tree was published on Motherlode and printed in the Sunday Times newspaper last December.  Does it get any better than that?  That was pretty awesome, and Louise had a direct hand in that.

Louise is very connected with all that’s going on with kids and disability in the world.  I’ve had the good fortune to meet her, and present with her at meetings and conferences.  I respect her mightily, and see her as a champion for the written word and our secret world as parents of kids with differences here in Canada.

She somehow found Diogo Mainardi, who wrote a book about his son Tito called The Fall.  Louise interviewed him for Bloom, and the transcript results are chock full of wisdom about having a child with a disability.

I often feel so stuck in my thinking:  struggling about Aaron’s lack of friends or on the warpath to make change in the world for future generations, or outraged about injustices, or disappointed by organizations who pay lip service to family volunteers.  You’ll see those themes throughout my blog, along with my pithy attempts to be positive, remember the joy, and stay in the moment.

Diogo’s words suggested a deep acceptance of both his son Tito, and the reality he faces as a boy with cerebral palsy in the world.  The reality of the world is something that I have not yet learned to accept.  I see other parents raging about systems, and people…and I know that I do this too.  However, I also live in fear of becoming a mean and resentful mom, which is what is going to happen if I don’t adopt a more Buddist attitude about the way things actually are.  As my own father likes to say:  What is, is.

I’ve been thinking a lot about Diogo’s blunt words about his son, including:

Obviously, he has no friends.  Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower. This is something that we can’t impose.

That response hit me like a bag of bricks.  He’s right, of course when he says that you can’t force tolerance.

And, about changing the world, he says:
We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war. 

Diogo has taken a very smart approach to his book.  He acknowledges that nobody is going to read a book about cerebral palsy (except other parents of children with cerebral palsy).   The Fall connects his son’s story with the great, common stories of the world, and has wide appeal.  As he says, we need to enlarge the subject.  Andrew Solomon did that with his Far from the Tree – while his subject is kids with differences, I know his book has been picked up by parents of typical kids, non-parents…he has wide appeal with his approach of masterful storytelling mixed with research.

My hope for this little blog, and my future publications, is that I’m not just a ‘special needs mom’ – I’m seen as a woman, a wife, a mom of three.  I’m struggling with an emptying nest, having a punk rock drummer for my eldest son, finding sanity in a technology-filled world, living in a city I don’t really like, running my own business, and yes, being the mom of my last remaining child at home, who happens to have Down syndrome.  I also love food, movies, travel and books.  I’m more like you than you might think.  And it is through those connections – that sameness – that we are going to foster understanding and compassion of each other’s lives.

(Thank you, Louise, for this super interview with Diogo Mainardi, for championing fledgling writers, and for always making me think).

 

Elf and the System

All My Puny Sorrows is the latest novel from Miriam Toews. My two degrees of separation from Miriam is that she is friends with my good pal and writer Melissa Steele. I met Miriam once when she was playing pool in a bar on Corydon Avenue in Winnipeg. (It’s a tenuous connection with fame, but that’s all I have).

Corydon Avenue is featured in her newest book, as are a number of Winnipeg landmarks like the Assiniboine River, and a thinly veiled hospital on the French side of the river. It is at this hospital that Miriam’s protagonist, Yoli, visits her sister Elf. Elf has been admitted to the psychiatric ward after a stint in the ICU following a suicide attempt.

This is a sad book, touched with desperation and humour. Yoli wants her sister to live, or at the very least to die in peace and surrounded by loved ones. Elf is determined to die by suicide. Elf’s will is strong.

I was struck by the passages in All My Puny Sorrows that recounted experiences in the psychiatric ward. The encounters with the nurses and psychiatrists were, for the most part (and ironically), dark and depressing.

There are restrictive visiting hours for families and a ban on food. The nurses at the desk serve to stand guard to grill visitors. The only reprieve from the hardened staff is one psych nurse named Janice, who wears light pink track suits and tangos on her days off. She also doles out important hugs to family members.

Otherwise, the time and the people in the psych unit are bleak. The attending psychiatrist refuses to treat Elf and her ‘silly games,’ nurses are experts at avoiding eye contact with pleading family members, and finally, it is the uncaring system that lets Elf and her family down in the end.

This is a work of fiction, so it is fair to question if the treatment of the mental health experience is accurate.   But All My Puny Sorrows is also a deeply personal novel for Miriam Toews, as her own sister Majorie died by suicide four years ago.   So yes, I would assume that there is more than a glimmer of truth in her words.

Half way through the book, Yoli issues a plea for what her sister needs from the mental health professionals entrusted in her sister’s care:

“Imagine a psychiatrist setting down with a broken human being saying, I am here for you, I am committed to your care, I want to make you feel better, I want to return your joy to you, I don’t know how I will do it but I will find out and then I will apply one hundred percent of my abilities, my training, my compassion and my curiosity to your health – to your well being, to your joy.”

Isn’t that a beautiful sentiment for all health professionals? But that never happened for Elf, or a multitude of other patients who slip through the health system not feeling cared for.  For Elf, that crack in the system leads her to her end.

All My Puny Sorrows is an examination of a sister’s bond, a family’s love for each other and growing up Mennonite. It is also a mournful commentary of our broken mental health system. I am grateful for those who apply their compassion and training to their patients’ well being. I personally know of three exceptional nurses who work in mental health – Lisa, Heike and Laurene – how do we bottle their passion for their patients, and share it with their colleagues?

For those who don’t, or can’t, demonstrate compassion – can we educate people to care? Can we teach empathy? Is there a way to open up a heart to understand the perspective of who may be the toughest patients of them all – those with mental health illness?

I don’t know the answers to any of these questions, but I’ll keep preaching about kindness and compassion to students, health professionals, and anyone who will listen.  All My Puny Sorrows is a stark reminder that we need to keep trying to find the answers: for all the Elfs of the world, and for the thousands of patients in Canada who struggle with mental illness every single day.