Saturday, 30 April 2016

Prince, A Magic Shop and a Witch

Almost three weeks ago, my husband Jim and I went to hear the author Dr. James Doty speak about his book Into the Magic Shop at the Ottawa Writers Festival. I’ve been thinking about the talk ever since. Jim Doty was a poor and angry 12 year old who walked into a magic shop one day in his California desert hometown. A woman, Ruth, sat behind the cash register and began speaking to him in a way that no adult had ever done before. She offered to teach young Jim Doty secrets and lessons that would change his life forever.  What Ruth taught Jim in their daily conversations over the period of six weeks all those years ago was mindfulness and the connection between the brain and the heart.  Jim was a good student and Ruth’s lessons led him to forgive his alcoholic father and his depressed, disabled mother. He began to imagine a future for himself that was full of possibilities. Doty became a professor of neurosurgery at Stanford University and subsequently founded the Center for Compassion and Altruism Research and Education at Stanford.  James Doty’s story is a rollercoaster ride between ignorance and knowledge – he has loved and lost many times and with each crash, Ruth’s lessons have shown him the path back to authentic happiness and the balance between aspiration, humility, compassion and confidence.

A week after that book talk, Prince died. I am a fan of Prince’s music – I’ve always had to turn it up and dance when one of his hits came on the radio. But I’m a boomer, not a child of the 80’s who grew up with his songs as markers my personal memory book.  Nevertheless, I have become a little bit obsessed with his life and work over the past couple of weeks. 

Prince was a young boy when he decided to become the best rock musician in the world. He learned to play every instrument and he honed his vocal talent, too.  He wanted to be the best at every aspect of his performing art and he was. One time, someone asked Eric Clapton what it was like to be the best guitarist in the world. “I don’t know”, he answered, “ask Prince.” Why have I been so moved by the passing of this diminutive musical genius? I’ve been asking myself that question and I think it’s because he, like James Doty, reinvented the idea of grand possibility in his life and he dared other artists to follow him in the church of fearlessness.  As one pundit on CBC radio said recently, “Prince understood the power of the profane and the sacred. He knew that ecstasy was part sex, part holy and part excellence. And he believed in God – he knew there was a greater power.” 

Watch Prince blow up the stage at about 3:30 in this tribute to George Harrison in 2004.

And at the SuperBowl half-time show in 2007, organizers were frantic that the monsoon-force rains would make performing impossible for Prince and his dancers. “Can you make it rain harder?” was the artist’s response. Watch this! 

So what does a book about a magic shop and a recently deceased rock and roll performer have to do with caregiving?

First, they are both inspiring, but that answer is too simple. They’ve mastered their craft to such an extent that they can move fearlessly and without boundaries into territory that is 100% grit, joy and despair. That is our caregiver territory of human drama, generosity and hairpin turns of emotion.

Service providers should watch Prince’s performances and think about excellence. They should think about innovation and about bravery.

And what can we caregivers do with these lessons in living out loud other than watch videos and read good books?

Paolo Coehlomight have some answers in his novel, The Witch of Portobello.  The liner notes read: How do we find the courage to always be true to ourselves—even if we are unsure of whom we are?

That is the central question of international bestselling author Paulo Coelho's profound new work, The Witch of Portobello. It's the story of a mysterious woman named Athena, told by the many who knew her well—or hardly at all.

Coelho’s Athena is a contemporary witch who develops a cult following when she begins to teach people how to live more joyfully and mindfully.  “Use your left hand for a day if you are right-handed”, she advises.  “Dance purposefully off the beat of the music.”  Athena advises her friend: “What do you want? You can't want to be happy, because that's too easy and too boring. You can't want only to love, because that's impossible. What do you want? You want to justify your life, to live it as intensely as possible. That is at once a trap and a source of ecstasy. Try to be alert to that danger and experience the joy and the adventure of being that woman who is beyond the image reflected in the mirror.” 

“How do we find the courage to always be true to ourselves – even if we are unsure of who we are?” is an important question for all humans, but it’s especially urgent for caregivers.  Often, we lose sight of who we are as we tend to the needs of loved ones. Can mining around good books and the lives of extraordinary performing artists teach us something about living out loud in the quiet of our homes? I don’t know, but I’m definitely going to practice Ruth-from-the-magic-shop’s lessons to find out and I’m going to put on Prince and turn up the volume.

Thursday, 28 April 2016

The Divine Spark Inside Me

For the past couple of weeks, we haven't used our front door.  We enter and exit through the garage so we don't disturb the temporary home of a young family of purple finches nesting in our porch light. We don't turn on the light on either, because there's a Mama sitting on her eggs directly under the bulb.  As Jim jokes, we don't want boiled eggs or fried chicken!

These birds hold a powerful memory for me. They've nested before and I remember watching them intently in the days when Nicholas was struggling hard with illness and pain. At that time, they were my companions and my reminder that life pushes forward outside of my own four walls.  Here is what I wrote about my my solitude and my front door visitors in my book, The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving:

I remember reading a film review in the newspaper. I never actually saw the film and I cannot even recall its name. But the reviewer’s words are still with me today. The film was about a convent somewhere in Europe. A young nun complained about having to wash dishes and scrub pots. The Mother Superior chastised her, saying, “There is meaning in those dishes, in the act of scrubbing.” As the reviewer said, the film was a testament to the idea that the extraordinary exists within the ordinary; that the entire moral universe can be found in the mundane tasks of everyday life. This sense of wholeness and connectedness is what I found in my garden.

 Outside our front door in Ottawa, we had a black wrought-iron openwork light fixture. Each spring, a pair of tiny sparrow-like birds called purple finches came to nest in our lamp. The first year they came, all their bits of straw and string simply fell through the mesh onto the ground. Annoyed by the mess, we swept up and thought nothing more of it until one day, there on the ground lay two tiny, broken bright blue eggs. I wept a little, berating myself for not understanding their simple need to have a safe nest for their offspring.
The next year when we heard their distinctive chirps at the door, Jim cut some bits of cedar and created a floor on the base of the lamp. Nest building began in earnest, and soon there were four tiny eggs tucked up amongst downy roan feathers. That year, I watched as the mum kept her eggs warm and the father worried nearby. The eggs eventually hatched into a noisy quartet of open beaks and soon enough they were ready to fly. I sat an entire day, watching in suspenseful anticipation as every finch in the area arrived on our pine tree to begin “training” with the youngsters. By turns, each bird would fly to the top of the lamp, perch there for a second and fly off to the nearby branch. The young birds had a tricky rite of passage: they had to fly inside the lamp and exit through a narrow passage at the top of the ironwork. By dusk, all the birds had left the nest and we could finally turn on the light and resume our life without our temporary tenants.
These birds living in my midst, nurtured by us and by the rest of the flock, gave me a certain antidote against loneliness. I had genuine curiosity about the life in my garden and most certainly, felt “some minute, divine spark inside me.” By this time I had given up on any idea of justice or natural order in the world. Contained in my garden, I thought, there is transcendence; there is grace. I began to think that peeling potatoes, raking leaves and mixing cakes were all a sort of prayer. I began to understand that to be free, I had to have an antidote to despair.

          Theodore Zeldin writes about how some people have acquired immunity to loneliness in his book An Intimate History of Humanity.[i] In fact, one of his themes is actually called “Loneliness as an Obstacle to Freedom,” which of course speaks directly to me, given that I am discussing my family’s “Freedom to Be.” Being the mother of a child with multiple disabilities is, by definition, a very lonely life. Nicholas’ illness, mobility challenges and communication difficulties never made us top of the guest list at friends’ and neighbours’ homes. When his health deteriorated and pain became our constant enemy, we hardly ever spoke to anyone save health professionals. I had wonderful friends and an extraordinarily supportive family, but I found it impossible to share the gut-wrenching worry that seemed so exclusive to our little family. Zeldin talks about the fear of loneliness as being a great barrier to personal freedom. He observes that those who have overcome a fear of loneliness have done so through experiencing a solitary lifestyle, whether by choice or even by incarceration. But he also says, “The final form of immunisation has been achieved by thinking that the world is not just a vast, frightening wilderness, that some kind of order is discernible in it, and that the individual, however insignificant, contains echoes of that coherence. People who believe in some supernatural power have their loneliness mitigated by the sense that, despite all the misfortunes that overwhelm them, there is some minute divine spark inside them.”

[i] Theodore Zeldin, An Intimate History of Humanity (London: Vintage, 1998), p. 68.

Saturday, 23 April 2016

Are Bad Habits Your Way of Getting Respite?

Yesterday I was listening to an artist on the radio.  I was in the car and I was travelling only a short distance, so I don't even know who this artist is or what they produced, but I was captured by this, "I wanted to explore grief and how we either turn away from it or we look it right in the face."

I began to think about turning away from grief and what that might lead anyone to do, especially caregivers. Self-medicating exhaustion and sadness in our society usually equates to a glass of wine (or three) or it equates to eating foods that are high in sugar or fat.  These treats at the end of the day offer us temporary satisfaction and in the case of alcohol, the promise of a duller pain.  These enticements can become a daily form of respite.

I'm not talking about preaching to persuade people to give up the rewards that give pleasure at the end of a hard day. Rather, I thought it was interesting to consider whether sometimes over-indulging in self-medicating with food and booze could be a form of turning away from grief. And what's the end result if we do that day after day over years?

What would happen exactly if we decided to look grief squarely in the eye? Would that change anything?  Julie Keon, author of the wonderful "What I Would Tell You" has this to say:

"Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly...When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home... You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice it isn't as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer."

Sometimes the choices we make represent the way we manage our deepest emotions. There's nothing wrong with wine or chocolate cake (two of my favourite things). But they can become bad friends if they entice you into the abyss of despair. The next time I feel at my worst, I am going to re-read Julie's words and consider how I manage grief in my own life.

Thursday, 14 April 2016


I wrote this article for Today's Kids in Motion Magazine and it appeared HERE. It's written for an audience of parents of children with disabilities, but the advocacy principles apply to all caregivers. 

They say it takes a village to raise a child, but in today’s climate of government austerity and private consumerism, where are all the compassionate villagers?  Is it possible for families to successfully galvanize community supports to help them raise a child with disabilities?  The answer is YES, if they borrow strategies from professional lobbyists to influence government agencies, community leaders and neighbourhood resources.

There are four things that parents of children with disabilities have in common 1) They are exhausted, 2) They are on at least one waiting list for help with family needs 3) They probably haven’t had a real break since their child was born and 4) They fear the future because they know they can’t survive the long term with the first three realities.  Most families know they should advocate for help with care at home, but they don’t know where to begin.

Parents of children with disabilities perform thousands of small tasks every day.  Each task in itself seems perfectly doable, but over time, parents can be worn down by the weight of caring and constantly seeking support.  Engaging in a coordinated advocacy effort to access help at home might just seem like one more thing to do, but it’s worth it – and you don’t have to do it alone.  In fact, a team of committed family members, friends and community members can do it with you.

The building blocks of advocacy are: ANALYZING what help you already have that is helpful, IDENTIFYING what kind of help you need, RESEARCHING the community for sources of direct help as well as people to help you advocate, CULTIVATING a champion within your target organization, and EXECUTING your request under winning conditions. Professional lobbyists use these techniques to influence government – families can use them too.
To begin advocating for care, it's important to understand the 'givens', or what you already have in the way of support.  Knowing what kinds of help are actually helpful to your family is the first step in deciding what you need. A friend who takes ALL your children for a sleepover is one kind of informal support that may be truly helpful.  A weekend half-day respite programme for your special needs child (formal support) might be too far away, making it more bother than it’s worth.  Begin by assessing what kind of assistance you have for the whole family currently and decide what kinds of help are helpful for YOU. 

Next, make a list of daily tasks that you carry out for your family’s care and wellbeing, putting a star beside those tasks you would assign to an outside person, in an ideal world.  Some families find a weekend away most rejuvenating, while others may seek after-school or dinnertime help.  If a child with disabilities is often ill, parents may wish to spend time at the hospital bedside.  That means assistance with other children and pets at home.

Parenting a child with disabilities is an isolating experience.  So it’s important to survey the local community in detail - this means Googling your neighbourhood or city.  There might be a community group, church committee, high school club or neighbour who could provide support.  And that support could be in the form of helping to create a strong advocacy ‘team’.  Local community centres have a mandate to support healthy families and most high school students must complete volunteer hours in order to graduate.  Remember, you are searching for both places that might offer programming AND people who could help you advocate. 

At this stage, an advocacy goal for home help should be formed.  It might be, “one weekend per month respite for my child with disabilities”.  Or it could be, “a teenager to help with homework after school so that I can make dinner.”  Families of older children may be seeking to plan future supported housing arrangements.  Whatever the advocacy goal, a group of family and skilled friends will be required to pull together as a team to locate resources and advocate for solutions.

Once an agency or resource organization has been identified as an advocacy target, an information process called a ‘strategic inquiry’ begins.  This process involves seeking advice, developing a deep understanding of ‘who’s who’ in the organization and building a relationship with key players.  The objective of the strategic inquiry is developing a clear understanding their objectives.  For example, if respite means having someone with nursing skills for your child, the advocacy target may be the local medical college.  A cold call to the office of the Director to ask about getting help into your home might not be successful.  But, an information gathering appointment (with you or someone who has agreed to help you advocate) will very likely reveal some strategic next steps.  An appointment to ask advice could be the first step in cultivating a senior official to be ‘your champion’ within the target organization.  He or she will represent your family’s interests when budgets are being decided and programming decisions are made.

Nominate someone on your team to be the record keeper for your advocacy effort.  Their job will be to organize copies of important background documents such as medical reports, meeting notes and contact details for all concerned.  Your team secretary will also produce a document called a ‘briefing note’ – that’s just a fancy name for a handy, bullet-point advocacy tool.  The briefing note should include a few sentences introducing your child with disabilities and the key supporters in his or her life, such as family members, special friends and anyone else who is active in supporting your child.  A list of needs and supports in point form is next, followed by a brief story or anecdote to illustrate your situation and needs.  Finally, there’s a list of questions with lots of space for note taking during meetings with your potential sources of assistance.  Sample questions might be, “What advice do you have for our family?  How have others dealt with similar situations?  Who else can I speak with about our request?  What can we do for follow-up?”  After the meeting, don’t forget to drop an email to say thank you – in advocacy, a polite expression of gratitude is worth its weight in gold.

Good practice in advocacy will not guarantee outcomes, but it will deliver greater opportunities for success.  And that’s vital, because going without help at home over the long term is not a healthy future plan for any family.