his tell-tale heart

tell-taleAt lunch yesterday, Aaron was busy trying to us something he recently learned in English class. He said: the guy had a bird eye! A vulture! His heart was beating out of his chest! He was buried underground!

It took some Googling to figure out what he was talking about. He was referring to Edgar Allen Poe’s short story The Tell-Tale Heart.

This is what happens when you include a kid with a disability in a high school English class. Did he ‘get it’? Yes, he got it more than I did – me with my fancy English university degree, me who doesn’t know much Poe at all.

This isn’t the first time this has happened. A few weeks ago, Aaron arrived home from school with his journal.   In it, he had printed: We learned Romeo and Juliet today. It is a superb story by William Shakespeare. Later, his teacher told me he took a comprehension test about the play. He understood everything: who loved who, who hated who, who died. This is a kid who loves drama in real life. Of course he’d be drawn to it in literature too. He is his mother’s son.

Beth Foraker wrote a lovely piece on her blog about her son (age 14, who also happens to have Down syndrome) and his love of Macbeth.

There is a lot for both educators and parents to think about with these anecdotes. What preconceived notions do we possess about what kids with differences can and cannot learn? I thought about all the myths I carried about Down syndrome when Aaron was first diagnosed: that he would be mindlessly happy all the time (WRONG), that he wouldn’t understand sarcasm (WRONG), that he wouldn’t be a consumer (WHO TOLD ME THAT? SO WRONG). Did I think he would understand Edgar Allen Poe or Shakespeare? I hang my head in shame – no, this version of reality had not crossed my mind.

This holiday season I am thankful for Aaron for having proved me wrong, over and over again. I am grateful for educators like his English teacher. You never know what this kid might learn – we all just have to give him a chance. As Beth points out, this means giving our kids access to curriculum at school and access to rich experiences in life. She so eloquently says: Because we can never guess or know what will touch their hearts and speak to their soul.

making your money count

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Photography by Sheri-Lyn Seitz

One of the many old fashioned things I like to do is to mail handwritten thank you cards. I find joy in settling in to write on pretty handmade cards, carefully choosing my words, licking the envelope, applying a stamp and mailing a card. I think it reminds me of all the correspondence my grandma and I sent to each other over the years – back and forth in the mail, no email yet on the horizon.

This habit has extended to my place of work. I feel blessed that we now have families come to our health centre to share their stories, knowledge and wisdom with staff and students to improve the family experience.   Afterwards, I like to write a personalized note – not just saying a generic thank you – but cards express why I am saying thank you too.

I work for a hospital that cares for and serves children with disabilities. I am fortunate to know an awesome social worker there, who has the experience of going through rehabilitation herself. She is the person who introduced me to Pottery Works, which is a collective of artists who are overcoming challenges through artistic expression.

I’ve had a long week and I was out of thank you cards. I normally would have stopped at Chapters and grabbed a box of cards, but my friend’s recommendation was on my mind. Pottery Works has a retail store in New Westminster’s River Quay. This is far away. But I got in my car and sweated through the classic semi and garbage truck gridlock traffic on Columbia Street to the New West, half-cursing my decision along the way.

I paid for parking and walked along the Fraser River waterfront to the Pottery Works store, which is tucked in beside the River Quay administration offices on the second floor. It is a little corner display of colourful pottery and – jackpot! – hand-made cards. Artists who have disabilities create all the gallery’s work. These artists also take shifts working at the store.

I picked out a hearty tea mug with a bright purple flower. The young lady in the store showed me the cards – these ones have photographs, she pointed out shyly. I stood for a long time, choosing ten different cards. One with a photograph of flowers, another a power line with sneakers hanging off of it, another a picture of graffiti that said, ‘you are beautiful’. They are well-composed pictures, clearly taken by a photographer with a keen eye for lines and light.

I’ll take these, I said. A big smile broke across the face of the woman serving me. These are mine! she said. This is the best! she said. I smiled too, biting my lip so I wouldn’t start crying. I could feel the tears threatening beneath my eyes. They are great cards, I said, explaining that I work for a children’s hospital and that I would be sending out to families. It is super for families of younger children to know what is possible, I croaked out, trying hard not to succumb to the tears, thinking this would look weird or be upsetting. I flipped over the cards – the artist I was speaking to is named Sheri-Lyn Seitz. I work here too, she added, and I get paid. GOOD, I said – you SHOULD get paid. My tears were now rumbling furiously, almost at the surface.

Never had a simple retail transaction had so much emotional meaning for me. After Sheri-Lyn packaged up my purchase, I scurried off to the washroom and burst into happy tears in the stall.

I came to Pottery Works looking for greeting cards. I thought it would be cool to support artists who happen to have disabilities. I ended up buying cards because the photographs were lovely and the cards were well-crafted. I cried because this little extra effort of driving to this gallery ended up paying me back a thousand times.

Pottery Works reminds me what is possible for my son. All he – and others with disabilities, too – needs is someone to give him a chance. Pottery Works offers opportunity – and opportunity is everything. Here’s to spending our money somewhere that really counts.  It is worth the effort, folks.  Trust me on this one.

pay attention to where the suffering happens…

...for that is where the healing begins.

I felt very fortunate to attend Dr. Rita Charon’s lecture at the Vancouver Institute last night with two wonderful colleagues from my children’s hospital workplace.  Dr. Charon’s talk was entitled The Power of Narrative Medicine and it was a beautiful marriage of literature, art and medicine.

I hung onto every eloquent word she said.  It was as if Dr. Charon had heard me preach about active listening, storytelling and reflective practice over all these years, but then she took my simple thoughts and draped a complex intellectual layer over them.  Her lecture was very smart and I can’t stop thinking about what she said – I cannot recall being that mesmerized by a presentation before.

The premise of her lecture was this question:  how do we be totally present with another human being?  While I talk to medical students about simple things, like eye contact and not appearing rushed when they meet with patients, Dr. Charon goes even further by teaching health faculty students how to read and to listen to stories written in the literature so they understand how to pay attention and to recognize that every single word counts.  This human skill of careful attention can be applied to work with patients, who often crave one simple thing: to be heard and understood.

Once we understand how unified we are at the human lived experience, then our troubles (in health care) are over. 

She spoke about boundaries, and how the artificial borders we place between each other as ‘professionals’ and ‘patients’ are actually permeable.  She wondered what methods she could use so she did not have to be a stranger to her patients, and concluded that this can only happen when she was listening closely to patients with a mixture of curiosity and wonder.

Pay attention to where the suffering happens.  This is where the healing begins.

Dr. Charon spoke for just over an hour.  I could have listened to her forever.

I thought about my English degree and how I bring the ‘soft’ right-brained stuff into my scientific, technical work environment.  I’m often dismissed and misunderstood, but I keep my head down and continue on.  I don’t underestimate the influence of initiatives like new art on the walls, a book club, TED Talk showings and inspirational quotes that I tack onto the hospital bathroom walls. I’m interested in nudging my colleagues to think and feel in different ways.

The conversation on the way home with my two work friends (one a clinical librarian also with an English degree, and the other a leader with a graduate degree thesis in storytelling) was the most interesting.

We all wondered if the work of health care was meant to be purely embedded in math and sciences.  Isn’t caring for patients in itself an act of humanity, and not a function of  science?  

(Here’s a snippet of Dr. Rita Charon’s wisdom.  Take the time to watch it carefully.  She does not have a sound byte-like style of speaking – and that’s what was so refreshing about her talk last night.  You have to work to listen and understand her words – they will not be spoon fed to you.  It made me realize what a rare gift Dr. Rita Charon is in our rushed and frantic world).

ted talks

We are doing a cool thing at my work at a children’s hospital.  We are hosting monthly Ted Talks at lunchtime in the library, which is open to all staff and families.  We decided not to show health-related talks, and instead host Ted Talk screenings that our outside of our normal box of health care.

If we think hard, everything we learn can apply to our work & personal lives.  This Ted Talk – how painting can transform communities – tells the compelling story of community engagement by two Danish painters who were painting houses in poor neighbourhoods in Rio.

What did they learn?  Never make assumptions.  Ask the people.  Involve the people.  Be with the people.  Break bread with the people.  These are keys to engagement that applies to every setting:  art, health care, education, brought to us by two funny Danish guys.  Anyone and everyone can be our teachers if we keep our minds open enough.