by Donna Thomson, author of The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving
When I was a teenager, I longed for something exciting to happen. Walking home from school, I prayed for tragedy, drama and romance. “Be careful what you wish for”, my Mom said.
In 1973, I was 18 and my Dad had the first of three paralyzing strokes that would claim his life two years later. Helping around the house when Dad was sick turned out to be my first taste of family caregiving. I suppose in some ways, that searing experience helped to prepare me for the birth of our son, Nicholas. Nick arrived in 1988 with severe cerebral palsy and a myriad of medical challenges. “Who knows what makes the little turkeys cry?” mused our doctor when I complained our baby had screamed for 37 hours in a row. A few months later, we learned that ‘neurological irritability’ was a symptom of brain injury in newborns.
Nicholas is almost 26 years old now. He has survived horrendous surgeries, chronic pain, and even a palliative diagnosis. Against all odds, he’s still kicking… and smiling.
My life of running a home hospital for Nick while raising our daughter and maintaining the facade of being happy, rested and ‘normal’ wasn’t easy and certainly, I almost never succeeded. Gradually, I began to feel that my place in the world was to be transparent… it was to focus a beam of light on others as I shifted into the shadows. I quieted my restless spirit and found some degree of peace in reconciling my few life choices. I looked around my home and found things to be happy about – my children’s laughter, the blooms in my garden, melting butter in mashed potatoes or folding warm towels. All these ordinary gifts filled the empty space in my heart.
Who cares about the invisible lives of caregivers? No one, I thought. Until one day when I began to imagine that perhaps our story of extreme caregiving at home could have lessons for everyone, including those caring for elderly parents. In the course of an interesting conversation with a friend, I learned about the work of the Nobel Prize winning economist, Amartya Sen. Sen writes about extreme poverty in India and the central question he seeks to answer is, ‘how can people have a life that they value, even within very challenging life circumstances?’ Suddenly, I thought, “If I think about our family life in this way, perhaps our home experience has some important lessons for other caregivers, for governments, for church leaders and for all who seek to create a more supportive world for everyone who gives or receives care!” I began to research Sen’s work and to have a long, hard think about what programs, services and available tools had helped our family to have a life that we valued. Many weren’t helpful at all. Exposing how our society undervalues caregiving and reviles dependency became my passionate objective. That, and exploring ways that families like mine could have a good life, even while running a home hospital and giving twenty-four care.
The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving (The House of Anansi Press) is the result of blending a narrative of the triumphs and traumas in our family with reflections on what constitutes a good life for caregivers and those we love. My book is already available in Canada, but I’m very happy to announce that this new and expanded paperback edition is available now in the USA as well. I hope it sparks thoughtful conversation at dinner tables and in boardrooms about the value of giving and receiving care in our society.
“This book should be read by all who seek to understand what it means to be human” – Jean Vanier, founder of L’Arche
Was looking for site where caregivers can exchange info re specific issues r/t physical care of young adult with CP. I am the granny of 21 year old, daughter is primary caregiver. I am very touched by this. Want to get the book. Going to see if Amazon has it. Will visit this site again. Thank You!