At a recent meeting of the American Academy of Cerebral Palsy and Developmental Medicine, Donna Thomson gave a keynote address, reflecting on her own experience as a caregiver for her son who is now a young adult. Speaking before several hundred health care professionals and researchers, she told the story of raising Nick, who has severe CP and is medically complex. Nick, who is almost completely dependent on caregivers, has required repeated, often lengthy hospitalizations throughout his life. In her remarks, Donna described the stress of 24/7 care taking, the pressure of repeated decision-making without clear best options, the necessity of being an ardent advocate without alienating those who have the power to effect the fragile balance of day-to-day caregiving, and the ironies of living in developed societies with abundant resources that are not fairly distributed to people with disabilities. Donna was preaching to the choir that day, since all of us in the audience work with children like Nick.
So, it caught me up short when Donna finished her remarks with a story about a recent hospital admission. As I remember it, Nick had been suffering in terrible pain from chronic, disabling complications of his CP. The family and the medical team had tried everything they knew to provide a bit of comfort, to no avail, and everyone was completely exhausted, emotionally and physically. The only option, after weeks of sleepless nights, and constant agony, was to return to the hospital for another procedure that had no guarantee of success. Even getting Nick to the hospital was excruciating, so when he was finally settled and the nurse asked Donna if there was anything she needed, I was not truly prepared for her response. Nick’s admission, after all, was a routine occurrence for many of us in the room. Donna looked out into the audience and she said to us that what she most needed at that moment, and what parents like her most often need beyond medical expertise, and clear communication, and an ethical distribution of resources, was kindness. “Right then, I just needed a little kindness.” I remember that she offered this quietly, with a slight nod, and a well placed pause for all of us to catch a collective breath.
Not sympathy. Certainly not pity. And not another mini-lecture about the risks and limited benefits of the upcoming procedure. Parents in Donna’s shoes need kindness on a routine basis, in any form, from anyone who cares to offer it.
Donna Thomson writes in her book, The Four Walls of my Freedom: Lessons I’ve Learned from a Life of Caregiving, “The wellbeing of children and their parents is so deeply interconnected that usually parents cannot separate the two. Certainly, I couldn’t… When a mother experiences a quality of love that is desperate and feels hopelessly inadequate at times to meet her child’s needs, her sense of wellbeing is very poor.” What parent has not felt that desperate love and inadequacy in some way, at some point in their parenting. Imagine the additional impact when your child lives on the edge of mortality, or chronic pain, or physical and emotional decline. Imagine the impact, likewise, of a simple act of kindness.
I have been thinking about the impact and necessity of kindness in health care. Since being awakened by Donna’s truth-telling, I have tried to be more intentional about offering kindness and practicing kindness with my patients. I have sought out opportunities to teach kindness to students, and looked for ways to offer kindnesses in my day-to-day life. What I am learning is that kindness is most often met with gratitude and returned kindness.
I left the lecture hall after Donna’s keynote and knew that I had heard the truth told by someone who had the courage and humility and wisdom to speak authentically from her own experience. I left the annual meeting with a renewed commitment toward offering kindness. Now, via this blog, I hope to post stories, and musings, that reflect and inspire kindness and consideration. Call it my offering of kindness.