THE MUSIC BETWEEN US: Memoir of a Bedside Musician

 

I am always fascinated by stories of personal transformation. How does anyone achieve redemption, wisdom, grace and meaning after experiencing or witnessing prolonged suffering? I'm especially interested when those stories come from caregivers. 

Steve Litwer is a volunteer guitarist for patients in hospice care. His book, The Music Between Us: Memoir of a Bedside Musician isn't just about the music he plays for dying patients, though. It's a story of growing up with a mother who had severe mental illness and a father who was incapable of protecting his children from the ensuing neglect and abuse. It's a story about music, memory, healing and intimacy - against all odds. 

The author weaves harrowing descriptions of his early home life with riveting and sometimes delightful narratives of patients he plays for. Litwer observes, "I had never thought about my bedside performances like this - as acts of divine grace." 

Anyone whose own childhood was poisoned by a parent's terrible demons will identify with the author when he says, "Rationally, I new her mental illness was not her fault and that she simply needed more companionship. But that logic was not enough to overcome my bitter feelings towards her for what I endured as a kid." Litwer himself was for many years, unable to experience intimacy with others, including his own wife and daughter. But slowly, succumbing to the stillness and awe of being present with music throughout the dying process of many in hospice care, Litwer began to experience forgiveness, love and self-acceptance. Through the combination of music, memory and profound friendship with the dying, the author describes how it felt to be healed. 

A non-practicing Jew, Litwer discovers Christianity almost by accident. He describes visiting a dying nun in a religious order, the Sisters of Charity. In the course of their gentle spiritual teachings, the elderly nuns invite Litwer to answer the call to accept divine love. Litwer answers, "Yes, I accept. I surrender. Please take me." This passage left me wondering if our challenge as caregivers is similar: to embrace love, abandon judgement of ourselves and simply accept what we cannot control. 

For some, the personal pain of caring over time can transform into a sort of superpower. At the end of his memoir, Litwer quotes the author Anthony Goulet, "Count your scars as the number of times you've been healed, not wounded" and observes, "Thank God for my scars." 

Steve Litwer's book, The Music Between Us: Memoir of a Bedside Musician is available from all online major booksellers. 

Mining for Truth and Meaning in Caregiving and Memory

My sister Karen Thomson painted this portrait of our Mom and she titled it Partly Who She Was. Karen painted this from a photo that we took of Mom just as she got out of the car at Hovey Manor, a lovely country hotel in the Eastern Townships of Quebec. We'd taken her there for a special treat: dinner and an overnight stay in a large suite overlooking the lake. As Mom stretched her legs after the long drive, she looked around at the half-familiar hotel grounds. In her face, my sister and I saw the sharp contrast between her keen observation and her judgement, all contained in a thin shell of frailty. We took this trip in the early spring of 2018 and she died in mid-August. Aged 96.

Since Mom's death, my sister and I have talked a lot about who Mom was and how she shaped us. I have spent many hours sifting through the many unlabelled splinters of my memory trying to make categories of 'good' and 'bad'. But it's just too hard. I love my Mom, loved her. But she was a person of extremes and she was wilful. As a caregiver, we are supposed to distill our feelings down to those of kindness, forgiveness, compassion, right? But often it's not that simple.

I'm away right away right now with Jim, on our annual winter getaway to Cat Island, Bahamas. This is the one time of the year when I read a lot of fiction. The book on my lap now is Warlight by Michael Ondaatje (I highly recommend it - it's a wonderfully rich read and a great story). Nathaniel, the main character, has a complicated relationship with his mother. Here's how he describes it: It had taken me a while to realize that I would in some way have to love my mother in order to understand who she now was and what she had really been. This was difficult. 

Mom, I miss you. I love you.

A Remarkable Story of Banishing Grief After Loss

KarolinaJonderko is a Polish photographer who nursed her beloved mother throughout a frightful journey to the end with cancer.  After her mother died, Jonderko realized that she’d forgotten all the happy memories of family life before cancer.  So she took a remarkable decision.  Jonderko decided to photograph herself wearing her mother’s clothes and have her sister recall and record happy memories evoked by various outfits.  Jonderko's sister had her happy memories intact because she had not nursed their Mom.  At first, the project was purely personal, but when a photographer friend saw the images, he urged Jonderko to share them in order to help others struggling with grief and loss.  I am very glad that we have these images now and that through her art, Jonderko was able to reclaim her happy memories of her mother. 

"It’s Christmas Eve, mom bustling in the kitchen, taking golden carp out of the oven carefully as not to stain herself with the hot butter. She is even wearing makeup, green, to match the outfit. She’s happy. She loves Christmas. After dinner, she is sitting at the piano and we all are singing Christmas carols." (Text by Karolina Jonderko’s sister)

My own daughter Natalie is a specialist in material culture and object analysis.  She has a particular interest in clothing, memory and identity.  In her undergraduate course of study, she wrote an essay about a dress and a suit that I had worn years ago and that I gave to her.  This is what she wrote about my clothes that she wears now:
 

In Daniel Miller’s ‘Making Love in Supermarkets’, Miller explains the act of parenting as a sacrifice through love. Miller shows that parents want to give to their children the sense that they are known and loved, always searching to give them the best life experiences and chances as possible. Often, this relationship is mediated through material objects. When my mother passed on these dresses, she passed on the hopeful sentiments that I would someday experience the same happy memories as she did. As McKraken explains, when things are bought or passed forward, there is often a ‘divestment ritual’, whereby the traces of its passed owner are erased, in order for objects to be personalized by its new owner. However, in the case of these garments, the exact opposite of a divestment ritual has happened where my mother and I both reside in the garments, both mentally and physically. In reaction to passing the garments on to me, my mother stated “I don’t see it as a loss at all, it is a gain, they have a new life through you. Parenting is all about love, you want your child to have, you want your child to dream, you want your child’s dreams to come true, and to give them a symbol of your own dreams coming true”. Here, the garments act as a bridge between the relationship I hold with my mother, where the narratives of our lives become increasingly embedded within them not in a sentiment of tension, but mutually constitutive. As the garments are continually worn, the stories accompanying that elevated experience are told, and we continually learn more about one another as individuals.  (Essay "My Mother's Dress" by Natalie Wright, Masters in American Material Culture, Winterthur Museum and Gardens)

(Bead detail from my dress that Natalie now wears.)

I am so happy that my daughter has my dresses and that we each experience such strong individual and shared memories through them.  Listening to Karolina Jonderko today reflect on the loss of her mother, I thought about my own mother’s things.  I thought about what I will leave behind for my children.  How will our losses be healed by touching our loved one’s possessions?  Karolina Jonderko offers one way (her way) of banishing painful memories and replacing them with mental images of smiles, laughter and love.

Thanksgiving 2013

This is Thanksgiving weekend in Canada.  It's early Saturday morning now and I'm packing groceries from the fridge into shopping bags to bring to our cottage in the mountains.  Everyone in our extended family is there already.  Except Nicholas and my Mum, of course.

Yesterday I visited Nick in the afternoon and together, we skyped my mother.  It was about 4 in the afternoon and we caught Mom still in her dressing gown.  Lately, there are very few days when she gets dressed.  My sister Karen will go to visit her with turkey on Monday, but Ma probably won't eat it.  She has ceased to be interested in food or clothing.  On our call yesterday, Mom was so funny and feisty.  She bemoaned the fact that she couldn't drive anymore and suggested to Nick and me that perhaps she should take up hitchhiking.  That topic brought back a memory of once, when she was young, she did hitchhike.  A good looking fellow on a motorcycle picked her up and she was only too happy to hop on (nevermind she would never have allowed me or my sister to ride on one!).  When Mom got off at her destination, she remembers that young man said, "Young lady, you are the first and only girl I have had on my bike that naturally leans in to the turns!"  I didn't bother mentioning Sheryl Sandberg's bestseller "Lean In: Women, Work and the Will to Lead" because I didn't need to.  My mother could have written it.


Today, I am grateful that my Mom is still alive - that I can still hear her stories, some for the first time, like the one about hitchhiking or another one about her little friend Pinky Cohen who walked his ducks on a leash across Sherbrooke Street in Montreal in 1926.

Today, I am grateful that Nicholas is healthy.  His seizures are under control and now his night charts only indicate one or two very brief ones.  Quite a change from a few months ago when he regularly suffered over ten!  I am grateful that on Thanksgiving Monday, Nick will come to our house for a turkey dinner.  He is mostly tube-fed, but he'll love tasting a few bites of turkey and he'll chow down as much stuffing as he can.

Most of all, I am grateful for the love in our family.  I am grateful for the privilege of caring for the people in the world I love most. Happy Thanksgiving, everyone!

A Day To Remember... Always

Yesterday was a day that I will always remember.  Nicholas came up north to our family cottage for the afternoon!  It has been seven years since he was last here and we were all unsure whether he could withstand the pain of such a long (two hour) journey each way.

Let me tell you a bit about our cottage in the Quebec Laurentians and why yesterday was so meaningful to everyone in our family.

This old house was built by my grandparents in the 1920's.  Here's a photo of our beach in those days - my Dad is the young lad on the far right.  He passed away at the age of 54 in 1975.  Our cottage is full of memories - of spending summers learning from my Grandmother how to clean a fish, or light a fire in the wood stove.  My Dad taught me how to catch frogs and hook a bass.

I met my husband here at the lake.  Our respective grandparents were friends and my husband's family cottage is across the lake.  His parents met and married here too.  We joke sometimes when we meet 'new lake folks' - we introduce ourselves by saying, "This is my brother Darryl and my OTHER brother Darryl!"  It's a fact that there are so many Wrights and Thomsons of all ages here, it seems that everyone is related.  The lake, the memories, the rituals, the views.... it's all a deep part of who we are as a family.  My sister Karen is an artist and she paints the lake again and again.

So yesterday, our family was complete.  Nick arrived with Tom, his helper, after a long and bumpy drive through the country.  Nick was in pain.  The boys had brought the hoyer hoist along and we got Nick into bed right away for a lie down.  Tom gave him morphine and tylenol which took the edge off and pretty soon my guy was smiling again.

Our lake family began to arrive to greet Nick... brothers in law, sisters in law, cousins and friends.  Jim lit the BarBQ and we got Nick down to our balcony, overlooking the lake.  Everyone was so happy to see our Nicholas!

Nick left for home in the late afternoon after another lie-down.  We gave a second dose of pain killers just before we waved goodbye in the driveway.  Later, the boys skyped us to let us know that the drive home had been fine and Nick was full of bravado as well as relief that he had done it!!!

This morning, I called and asked whether Nick had paid for his visit to the cottage with seizures overnight.  This can happen - pain is a seizure trigger.  Only two seizures - we are so happy!  I asked Nick, "Would you like to try a cottage again, maybe in a couple of weeks?"  "Yeeeahhh" came Nick's reply.  So, we're planning a repeat lake visit, but better the next time.  We'll manage the pain more strategically and we'll get my Mom here too.  With Nicholas, every good experience is measured in the price he pays in pain.  Yesterday, the price was not too high and we're going to do it again.  Hallelujah.