This is a speech that I gave to the Diversity Group at Merrill-Lynch, Bank of America in London on August 15, 2011. It combines experiences and ideas that I have been reflecting on lately.
I am a mother, an author and the wife of the Canadian High Commissioner to the UK. This is my family – my husband Jim and my daughter Natalie who is 19 and a student at the University of Toronto. My son Nicholas is 22 and is disabled with cerebral palsy. Until Nicholas was 18, I provided him with almost all of his nursing care. Since coming to London in 2006 though, we have professional nurses 24/7 in our home and this sudden change in my own circumstances allowed me to reflect on what it means to offer care to a loved one who is completely dependent.
And Nicholas IS dependent. He has low vision, is non-verbal, is tube fed, and he has no functional control over any part of his body. To borrow a banking term, Nick looks like the embodiment of deficit. But those who see him that way would be wrong. Nicholas is sensitive, intelligent, funny, ironic and unashamedly optimistic.
I have been thinking about what I could say to a group of bankers that might be interesting and helpful. The markets are in flux – some might say that we are on the verge of a new economic and political world order. Last week, parts of London were burning and we felt suddenly hostage to lawlessness. So, with this backdrop of chaos, I thought perhaps I could say a few words about resilience.
Caring for someone who is completely dependent and medically complex feels very chaotic. It is an experience that has a daily, primary lesson of humility. When Nicholas was a baby, I believed that as a person with higher education, a will of steel and fierce mother love, I could ‘organize’ and execute a plan to overcome the effects of Nicholas’ cerebral palsy. Believe me, I can say years later that I have learned my lessons in humility very well.
After five years in London, we are packing to return home. Our posting is almost finished. On August 29th, we fly home to Ottawa and Nicholas will go directly from the airport to his new dwelling place, The Ottawa Rotary Home. For the first time, Nick won’t be living with us. The Rotary Home is a beautiful new residence with caring and clever staff. I know Nicholas will eventually be very happy and very safe there. But for now, we are all nervous and worried. After thirty seven years in the diplomatic corps, my husband will retire and look for other opportunities. The future for our family is full of unkowns.
Recently, I heard the British social scientist Charles Leadbeater say, “Your vantage point determines everything you see.” An analysis of anyone’s vantage point can help provide insight into what is within personal control and what is not. And in my experience, an important element of resilience is appreciating that difference and then making a decision to see something good. Even just one thing. Nicholas’ disability and his chronic pain have tested the resilience of every member of our family. In my book, I tell a story that I think demonstrates how resilience can be achieved by understanding your vantage point. The story is called “Welcome to Holland” and it was written by Emily Perl Kingsley, a Sesame Street writer and mother of a son with Down Syndrome. I think “Welcome to Holland” is a good analogy for any set of circumstances that feels terribly chaotic and impossible – circumstances that call for resilience.
“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland???!!!” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy! All my life I dreamed of going to Italy!”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around….and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
It is my experience that the time people spend at the airport trying to get back to Italy will depend on their vantage point – those who leave the airport first have honed their ability to pick apart those things they can and cannot change as well as their determination to see something good.
Last week, I had a most interesting conversation with my son Nicholas. On our to-do list before leaving London are two three hour skype interviews with the Ontario Ministry of Community and Social Services. These interviews are part of their process of assessment for social care funding. To prepare, I did a little research into the type of questions they might ask Nicholas and I found these examples: "What are your dreams?" "What do you think other people like best about you?" Nicholas uses an Ipad application called Proloquo2Go to communicate and it's slow going. But having an existential conversation with Nicholas is worth the wait. When I asked Nick what he thought others liked best about him, I was surprised and intrigued by his response. "Different" he chose from a long list of adjectives. "You mean your disability?", I asked. "Yeah", he said. "So, you think that people like you because of your disability, because you are different?" "Yeah." Still wanting to explore this idea, I queried "what is it about your disability that you think people like?" "Still." was Nick's reply. "Wow, I think you're right", I told him. "You are a great listener. You don't run off when people are talking to you. You are very perceptive." The irony is that I suspect those same qualities are what he likes least about himself.
Next, I asked "What are your dreams?" Nick's response tells alot about his character. After lots of stops and starts, I finally understood his response. "I want to go on a roadtrip with my old friend Adam to find the Ultimate Warrior". For non-officionados of the World Wrestling Entertainment, the Ultimate Warrior is the loopiest wrestler in the history of that organization and for the past ten years or so, he is has disappeared from the public eye. Nick and I burst out laughing and googled more of the Ultimate Warrior's crazy rants on YouTube. "Wait till the Ministry of Social Services hears your dream!", I laughed, "they'll have to fund it!"
It is absolutely true that some people like Nicholas because he is different – his disability certainly gets him a lot of attention. And I think people do appreciate his stillness. I do.
Parenting is a form of service – and caring for a child who will always be completely dependent is extreme parenting. Central to surviving it is giving up on the choosing self. To relinquish choice and be left in the zone of stillness is an interesting and strangely liberating experience. That’s why I called my book “The Four Walls of My Freedom”.
Facing adversity and facing the unknown require two things – NOT trying to change the unchangeable and seeing something good from a given vantage point. It’s a decision to do those two things and then to put one foot in front of the other.
Thank you for giving me this opportunity to share my reflections and experiences.