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All the Warm Blankets

October 4, 2017

I remember every single act of kindness I’ve encountered in health settings over the past years.  The images are embedded in my head like bright glowing lights.  I revisit them often to comfort me in times of distress and to rekindle hope in health care when my hope begins to wane.

 

My youngest child Aaron was diagnosed with Down syndrome after he was born.  I’ll never forget the image of his new pediatrician scooping him up and cradling him in her arms, excitedly exclaiming:  You have a beautiful baby boy!  After meeting countless specialists who focused on what was wrong with my son, this physician led with her heart and began with what was right.

 

Later, when he was two, another physician began her first meeting with Aaron by plopping herself down on the floor in the clinic room. (She was wearing a lovely dress – I can still see it, it was sleeveless, white on top, with a flowered skirt).  She was exactly his height when she sat down on the filthy floor and that simple act of connection extended towards Aaron endeared me to her forever.

 

One day, the Occupational Therapist who visited our home when Aaron was a toddler to help him with his fine motor skills looked me in the eye and unexpectedly said:  You are doing a great job as Aaron’s mom.  I responded to her sentiment by bursting into grateful tears.  Then there was the OR nurse who ushered me out the door after Aaron was anesthetized for surgery.  She put her hand on my shoulder and said:  Don’t worry, we will take very good care of him for you.

 

Like many moms of children with disabilities, I am always on guard.  I take my mama bear role seriously and am fiercely protective of my son.  Two years ago, when Aaron was hospitalized with pneumonia, he was lucky enough to have an exceptional student nurse assigned to his care.  She joked with him, high-fived him and patiently sat with him on his bed while he took his inhaler meds.  How I wish these acts were more common in rushed, over-professionalized health settings. Why should these simple gestures be exceptional?  As nursing professor and researcher Dr. Betty Davies says, It takes the same amount of time to hang an IV with a smile than with a frown.

 

During Aaron’s hospital stay, a pediatric resident wrote his name on the white board in the room so we wouldn’t feel foolish if we forgot his name.  A child life volunteer took the time to gown up to come in Aaron’s isolation room to fix his video console.  Early one morning, an aide stayed with my sleeping boy so I could run down to get a desperate cup of coffee.  The nurse on the night shift tiptoed about with a flashlight, making rounds while minimizing disturbances.  

 

None of this is counted by hospital bureaucrats, but all of it matters to me.    

 

Eight months ago, I was diagnosed with breast cancer. I morphed from being Aaron’s mom and caregiver into a patient myself.  The last few months have been spent in treatment, which included surgery and a bout of radiation therapy.  

 

After my diagnosis, I was in a constant state of hyper-vigilance when I attended my appointments and treatments.  I watched carefully for both kindnesses and cruelties.  I had assumed there was some ‘gold standard’ of care for cancer patients, but I quickly learned this was not the case.  The staff at the cancer hospital had seen thousands of patients.  I was just another middle-aged breast cancer patient to them.  What was a big deal to me had been fully normalized for them:  injections in my breast, constant near-nudity, pain inflicted without sedation, boob squishing devices – this was just another day at work for the staff.  

 

Reflecting on my cancer experience, I realize why it is that I crave kindness in health care settings.  I am (literally) stripped bare and exceedingly vulnerable in hospitals and clinics. I am barely functional and fed only by fear, for cancer has offered me an unwanted peek at my own mortality.  In this state of suffering, acts of kindness settle me down.  

 

I had four weeks of daily radiation and thought about many things while I was lying immobilized below the massive radiation machine.  There was one Radiation Therapist (RT) who was particularly gentle towards me.  What she demonstrated was not rocket science:  she offered me a warm blanket (I love the idea of the offer, allowing me choice, as opposed to the assumption that I wanted one), she greeted me warmly and met my gaze, she chit-chatted about the weather or my plans for the day, she helped me crawl on and off the treatment table and she put her hand on my arm to comfort me. She empathized with me as my breast became more and more burned with radiation, commiserating honestly:  Radiation sucks.  She was just as efficient with her time as the other Radiation Therapists who did none of those things.  The difference was that she was a healer and the other RTs were merely technicians.

 

The simple stuff matters, every single time.  Kindness is not about being nice.  It is the demonstration of compassion that is at the core of patient and family centred care.  Ask a health care professional to share a story about kindness.  You will find they talk about care for themselves as patients or for loved ones when they have been suffering:  hugs in the Emergency Department, smiles in the hallway, the friendly cashier in the cafeteria.  How do you want to be remembered by?

 

We all are softened by compassion. It rubs out the hard edges in this messed up beautiful world.  While medicine can cure us (sometimes), it is kindness that helps us to heal.  Give us your kindnesses, in any form they take.  They are salve for my wounds, if only for a moment. 

 

Sue Robins is a writer who lives in Vancouver Canada.  Her personal narratives about cancer and disability can be found at  www.suerobins.com.  

 

 

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