remembering henry

poppiesLong ago, when I was twenty and still in university, I worked in a Veteran’s Home as a Nursing Attendant. I’d often work mornings helping the staff get the men up and ready for the day – and then run across campus to my English class, dressed in my nursing uniform and white nylons.

I’m remembering that experience today. Nursing Attendants are true bedside workers. We were the ones who worked directly with the gentlemen on the nursing unit – many of whom required extensive care. We cleaned up things that the housekeeping staff wouldn’t touch. But we also had the luxury of time to spend with the veterans, as we helped them get dressed, or patiently helped feed them meals.

Nobody talked about the War. At the time, there was even a World War I veteran at the Vet’s Home – but there were many veterans from World War II and Korea. While the war was in the distant past, it lived with these men every day.  These were just ordinary men who had found themselves in terrible circumstances. The scars from those war-time experiences often were manifested in estranged families, whispers of abusive behaviour and alcoholism. I remember helping men to bed after their return from the Legion, reeking of whiskey, and slurring their words.

But that wasn’t the whole story. The wars had affected a cross-section of the population of men, and there were many dignified, lovely residents at the Veteran’s Home. They enjoyed the company of the young nurses who where there to support them, and many of them reminded me of my own grandpa. It was important for the staff to remember that these ‘residents’ were also fathers, granddads, brothers and sons.

There were many stories of kindness at the Vet’s Home. My clearest memory was one winter, when I was working nights. On night shift, there was a lot of sitting around at the nursing desk, waiting to respond to call bells. Every few hours we would have rounds, where we would quietly walk through the unit, checking on the men, emptying urinals, and turning those who were immobile so they wouldn’t get bedsores.

One night, my patient assignment included an elderly man named Henry. He was in the last stages of life, and his breathing was increasingly noisy and laboured.  He had no family or friends to visit him in his final hours. After our first set of rounds, I excused myself from the desk to sit beside his bed.  Henry had yelled and sworn at me in the past, but all that didn’t matter now. His hand had paper-thin skin, and I held it softly through the wee hours of the night. It was a long shift. When I left at 7 am, I said a quiet good-bye and gave him a gentle kiss on his forehead.  I did not look back when I left the room.

I read Henry’s obituary in the paper a few days later.

I learned many things from working at that Vet’s Home. One was to duck fast if something was being thrown at you.   My other realization was that health care is really about acts of kindness.   And that no man should ever die alone.

Lest we forget.

(I wrote this in 2013, and republish it every November 11).

behind the boy in the moon

I wept during Ian Brown’s plenary talk on Tuesday at the CAPHC conference. Big wet tears leaked through my mascara. I stopped myself just short of audible sobbing.

Towards the end of Ian’s closing words, I peeked at the audience around me. To my surprise, they were crying too: researchers, academics, administrators, physicians – those of impressive titles, but all people too. I pulled my tissues out of my mom purse and passed them around my table.

I knew why I was weeping, but I wasn’t clear on the reason for their tears. I am the parent of a young man who has an intellectual disability. I, too, have a little dream of a community of love for Aaron, like Ian’s dream for his son Walker.  But clearly my professional colleagues had their hearts touched and their tears triggered for different reasons – perhaps they were thinking about one of their past patients, or an aunt or an uncle, or even about their own vulnerability. I’ll never know.

Ian’s talk, although centred on people with intellectual disabilities (finally, they had airtime on a stage) was also a talk about what makes us human. And that’s not success or competition (as many of my accomplished friends are engaged in), but instead he expressed what makes us human is simply love and belonging. People with intellectual disabilities understand that deeply. As Ian said, the disabled do the work of love.

I can’t adequately summarize his talk. It was a profound homage to people with intellectual disabilities – the likes of which I have never bore witness to before.

I heard Ian speak in 2009, also in Halifax, also at CAPHC, and knew him to be brutally honest and real – unafraid and apologetic – refreshingly with no reverence for the graduate degrees and fancy titles that filled the room. I knew Tuesday’s talk would be important, and delayed my flight home until the next morning to see him. I knew it would be an important talk and it was.

The whole pediatric health conference had been focused on fixing: deciding who was worthy of fixing and funding; research focused on helping families to fix their children; and a session mocking patients who were trying to fix themselves by turning to alternative medicine.

All this fixing talk made me unsettled by Tuesday afternoon, after crashing from my high from Sunday’s CFAN Symposium. In stark contrast, Ian told the health care audience to stop trying to fix his son, to “pay attention to the person he actually is”. He continued, “Let us put medical care behind human interaction. Let us build communities that are much less bureaucratic, much more inclusive…and that embrace and celebrate the beautiful grace of people like Walker.”

Ian Brown was a messenger for love and belonging – the two things that really matter in health care – the only way we are going to see our way through the big costly bloody mess that is our health care system. He was an eloquent poet, each phrase carefully chosen, spoken straight from his Dad heart, passionate and poignant. I furiously scratched snippets in my notebook. About his son: what value does Walker’s broken life have?

About building a community: for once the disabled would have a home with a great view…where all you have to do is keep company with one another.

In the end, Ian challenged us to join the intellectually disabled and be touched by the grace of who people actually are, not by who we think they should be.

Later that night, I FaceTimed Aaron: ‘Hi Mom!’ he said brightly, his round face and almond eyes lighting up the screen, ‘How was your day?’ I was struck by the gift that is my son, by the very fact that he was born, that he is with us, that he is human. There are so few people who understand him in this world. He shows us the path to love every single day, over and over again. If only we can adopt enough humility to push our own egos aside to clearly hear what he’s trying to say.

facetime

a mama bear’s prayer

screen-shot-2016-09-26-at-3-21-17-pm

This is from Elizabeth Lesser’s brilliant book called Broken Open. She was referring to the anger that activists carry around with them.  That whole if you aren’t outraged, you aren’t paying attention thing?  Well, what happens if you are outraged all the time?   It is hard to turn it off, but we must try to in order to save ourselves.

So my heartfelt Sunday wish for you is that you find that quiet joy today.  I’m sitting on my couch with a coffee and a stack of newspapers by my side.  Miles Davis is playing on the record player.   That’s at least a good start.

smile because it happened

Last Friday, my husband and I tacked on two extra hours to our babysitter request to sneak out for after work drinks.  The week had been oddly brutal for random reasons:  Wednesday seemed to be proclaimed be hostile to Sue day, Thursday was littered with unpleasant emails and Friday zoomed in at the tail of never ending to do lists.

I was sitting across from my husband at Portland Craft, pretending I live on Main Street and happily sipping an amaretto sour.  An hour in, Mike started to become  jittery, disappearing to the washroom and ‘checking the score on the hockey game’ on his phone at the table. I was blathering on about something when I saw his gaze shift slightly and his face brighten up.

My daughter Ella suddenly materialized beside me, fresh off a plane from Edmonton.  I had been totally punked, never suspecting my man and girl had been scheming a trip to Vancouver for Mother’s Day weekend for many weeks.   My hands flew to my mouth in shock and I grabbed her, hugged her, and burst into grateful tears.  I last saw her over two months ago, and my heart ached heavy for her.  She is a beautiful young woman, inside and out, a light of my life.

Mike and Ella had a good giggle about my shocked reaction.  I had suspected nothing, and I think this is the first time I had ever been truly surprised.  It is difficult to surprise someone who keeps a tight reign on the family schedule.  I like to know every little thing that’s going on so I can dutifully record all activities in my date book.

I had told Mike that all I wanted for Mother’s Day was to see my far-flung kids, knowing full well my eldest was in the US and not travelling and wistfully hoping for some miracle that Ella (busy, in between semesters of nursing school and working) would visit.

The emptying nest has been a sad phenomenon for me as a mother.  I put my deep longing to see my older children in a little box in my heart that I take out only on occasion:  when I’m driving and a Mumford & Sons song comes on; when I set the table for three instead of five; when I’m trying to fall asleep at night.   These are rather pathetic occurrences and my only solace is that my kids are independent, strong of character and living the lives they want.  And, they generally respond to my texts on a timely basis.  What more can a mother ask for?  My loose parenting philosophy is this:  make sure they are securely attached in their younger years and then let them go.  This is hard heart-breaking work.

Ah, but the reward of seeing them, even rarely, is very rich.  We do not take each other for granted.  All weekend, I delighted in Ella’s presence.  We roamed up and down the streets of Vancouver, eating sushi & burritos & doughnuts (not all at the same time) and shopping for shoes.  We went for pedicures.  Ella played soccer with Aaron’s soccer team.  Both kids made me a lovely breakfast in bed on Mother’s Day – eggs benedict on a sesame bagel with avocado and sausage.  They concocted artful handmade Mother’s Day cards – Aaron under the guidance of his sister, carefully crafting the letters M in Mom like hearts.  We sprawled on the couch together and watched Amazing Race.  We basked in the sunset on Spanish Banks.

Soon it was Sunday night and time to take Ella to the airport.  This was the over part and yes, I cried at the departure drop off area.  Ella said, ‘don’t cry or I’ll cry’ so I stopped and held my sobs until I hit Marine Drive back home.

But then I remembered this good Dr. Seuss quote.  Am I blessed?  Yes.  Have I done my job as a mom?  Yes.  I saw Ella for a sweet 48 hours and enjoyed every single second of it.  Happy Mother’s Day to me and to you too.  I hope that you felt loved and expressed love this weekend, because in the end, that’s all that really matters.

seuss

quotesgram.com

 

love is the answer

grandma

Twenty four years after my post-grad studies in health care admin, 13 years after my experience at the department of health, 12 years after the birth of my youngest son with an extra chromosome, ten years after my work as a volunteer on a family council, seven years after the start of my family engagement career, I have finally found the answer that I have been looking for.

What is the key to patient and family centred care, patient engagement, patient experience, patient satisfaction and communication? Love. Love is the answer, my friends.

Three years ago, I read a profound essay called Love, a word that medicine fears, written by a family physician named Kirsten Meisinger. Dr. Meisinger finally uttered the word that I’d been skirting around all these years. I had been speaking about listening, perspective taking, empathy, caring, compassion, and humanity in health care. These are all euphemisms for one word: love.

Love means a deep caring for patients, their families, each other and ourselves. If we can open our hearts to those who are fragile, vulnerable and in pain, we will change the landscape of the health care world. This means dismantling the brick walls around our hearts that are built by egos, perfectionism, professionalism and fear. This means demonstrating what is in your heart by a gentle touch, a kind word, or a thoughtful gesture.

Fellow health care rebels, love is the great revolution in health care, for love is at the very core of health care. Here’s what you can do: create space, time, systems and environments where caring is celebrated, encouraged and rewarded. Model the compassionate culture you want to see by being compassionate to people lost in the hallways, the housekeeping staff, your colleagues and yourself. Make the time to actively listen to people’s stories. Offer to staff the time to be still, reflect and acknowledge their own pain so they can be open to another’s pain. Teach our students well to lend their gentle hearts to those in need, and how to softly save love for themselves so they can go home to their families at night. Count empathies, not efficiencies. Shed artificial roles to make person-to-person connections, not provider to patient ones.

All this love will build and build, until it finally reaches the tipping point. Only then will we get to the true purpose of health care, and that is to care for other human beings. The answer to all of your struggles lives in your own hearts. If you slow down, close your eyes and be quiet, you will hear it whispering to you.

The older I get, the less I know. The only thing I’ve really figured out about life after all these years is this one true thing: love is what heals people. It is the gentle hearts that will create change in this beautiful, messed up world.

(originally published in the Health Care Rebels Central blog).

perhaps they are not stars in the sky

stars in the sky

The nature of my work in a children’s hospital is that sometimes the children of the families we care for die.  The nature of life is that everybody we love will eventually die, but we keep on loving them anyhow despite this terrible reality.  This is what makes us human.

I do not know the right answer about what to say when a child dies.  All I can do is not be afraid.  Not be afraid of reaching out to their loved ones, not be afraid to speak the child’s name, not be afraid of not knowing what to do.  All you can do is try.

My very first published essay was in 2002.  It was called ‘Put your hand in her hand’ and it was my reflections about my dear friend Maureen’s beloved baby Scott, who had died two years earlier.  It was about all the awkwardness and fear that comes along with supporting a friend after a devastating loss.  I was an imperfect friend, often with my foot firmly planted in my mouth, but the important thing was that I didn’t give up on her.

Fifteen years ago this week, that little baby left this world, but he has never been forgotten.  I dedicate this to all the families who grieve for a child. I look up into the night sky and see Scott and Avery and Matthew and Sydney and Kate and Haley shining down on us all.  Peace and love to them, and to those who loved them.

Put your hand in her hand
-by Sue Robins
(originally published in Chatelaine, March 2002)

Whether your friend is aching because of a divorce, miscarriage or another brand of heartbreak, only one thing you can do is guaranteed to help. Sue Robins explains.

This was not the call I was supposed to get. The day after my friend Maureen was to give birth to her third child, the phone rang. I picked it up and heart a halting choked voice. “Maureen’s lost the baby.” “What?” I asked, confused. It was my former husband. I was in Vancouver visiting my brother. “Where did she lose the baby?” Then I understood.

Maureen’s baby, Scott Thomas, was stillborn on a Sunday in December. He was a perfect eight-pound infant. When I finally saw Maureen after she came home from the hospital, she appeared small and frail. Her fact was consumed with sadness. What I most wanted to do was bring Maureen’s baby back, give her the baby she deserved, the baby she so carefully nurtured those nine long months. And I wanted to hold Scott in my arms, admire him and coo at him and buy him little baby clothes and have I-want-to-have-another-baby pangs when I was around him. But I could do none of these. All I could do was be the best friend I could be to Maureen.

In a time of crisis, true friends come shining through for you. During my divorce, good friends clustered around me like a supportive tribe of women. Others fell by the wayside. What are the forces, I wondered at the time, that make or break a friendship? What keeps a friendship going through hard times? Grieving with Maureen and staying the course with her, I found the answers.

In the beginning, I felt desperate to alleviate my friend’s pain. I wanted to tear off a chunk of it and feel it for myself so she would not have to bear all the unrelenting sorrow. There was nothing I wouldn’t do. I organized the lunch buffet after the funeral, bought a picture frame for Scott’s photo, scoured the grief sections in the bookstore for any shred of information that would take away the crushing burden. I took flowers, dropped off cards, cleaned her house, babysat her other children. I did all this for mainly selfish reasons – I couldn’t stand to do nothing. I finally realized that my efforts were misguided when my six-year-old son said to me, “All you think about is Maureen and her baby.” His comment forced me to see that there’s a fine line between deep concern and doing too much. A hug, a gift, soft words, kind thoughts…none of these things bring babies back to life.

It’s not as if I couldn’t help my friend. My challenge was to follow her lead, to let her show me what she need. I remember being afraid to mention Scott’s name for fear of upsetting her – until she told me that it’s more upsetting not to mention her son. It struck me that, unless I was being offensive, I couldn’t upset her any more than she was already upset. By talking about her third son, I was honouring him and his place in Maureen’s heart. But it’s not easy. My mouth stumbled over Scott’s name. “Scott, Scott, Scott,” I practiced in the car on my way over to Maureen’s. Why was I so reluctant to say his name? I revered to pronouns, when I should have been saying Scott. In the same vein, for the first 12 months, I remembered Scott by dropping a card in Maureen’s mailbox on the fifth of every month. I wanted her to know I had not forgotten. Someone asked me why I did that. “You are reminding her what happened and not letting her move on,” the woman said. I responded by asking if she thought Maureen would ever forget. The death of her beloved baby is something that weighs on her mind and her heart all the time. My response might not have been perfect, but it was better than being paralyzed by discomfort. People are so afraid of doing the wrong thing that they err by doing nothing. It takes very little effort to say, “I’m thinking of you and your dear baby.”

And I ask to see photos of Scott. He is beautiful and peaceful and his lips are ruby red. I can almost forget that he’s dead until I look at Maureen’s face. The grief in her eyes, the sadness that burrows right down to her soul, kicks me back to reality. It’s painful for both of us, but healing too, to acknowledge that Scott was here.

Like all friends, I’m not perfect. I say stupid awkward things. I’ve been guilty of blathering on and on about clothes and movies and other friends when I’m with Maureen, as I seem to want to fill the air with my incessant chatter. I do this just to avoid a few seconds of silence and feelings of sadness. It took me a while to understand that Maureen’s grief was hers – not mine – and it was presumptuous for me to think otherwise.

While I tried to learn how to be a good friend to Maureen, I thought of how others had been true friends to me. For months after my divorce, it took all my energy to get myself out of bed and look after my children. I had none left to nurture friendships. My friends understood and waited, supporting me while I regained strength. As I sent through my own metamorphosis, my remaining friendships evolved into something more substantial and real. These women felt secure enough in our friendship and their own marriages to adjust to my newfound status as a single mother. They were patient with me and I have learned to be patient with Maureen. I let her be. Maureen helped me to accept sadness. I now know how to be with a crying friend. I just listen and hand her some tissues to wipe her eyes.

I also learned not to shy away from difficult conversations. I once asked Maureen how to talk about Scott. For example, I was not sure if I should refer to Scott’s birth or his death, for they are one in the same. Scott was born on December 5. She birthed him. I’m glad I asked because I didn’t want to refer to her son only in terms of his death or funeral. He was indeed alive inside of her; I witnessed his growth over the months.

I know my limits. I will never totally understand what Maureen is going through. The only person who speaks the same language as a grieving mother is another mother whose child has died. I have learned that there is no shame in saying, “I don’t know” or “I don’t understand.”

Two years have passed. Our lives continue. Maureen has since given birth to her fourth child, a healthy boy named Joshua Scott. I’ve made new friends and acquaintances. Scott’s birth and death taught me that I can’t expect Maureen to be the same person I knew before. Although we still go for coffee and see movies together, our relationship has changed inexorably. We are finding a new path, and in some ways, a new friendship.

I know what I have given to Maureen will return to me tenfold. If a horrible tragedy were to strike me tomorrow, Maureen would walk beside me in my pain. I know that much is true.