40 years ago last month, I started my internship in Pediatrics. Since then I’ve had a convoluted professional (and personal) path, but I observe a theme in that path – my attraction to families dealing with chronic illness and disabilities. My father was a physician who taught me that medicine is more art than science and the core of the art is respectful, caring talk. An observer of my career trajectory might see it as a search for the meaning and effective manifestations of his belief. I’d like to think they wouldn’t be mistaken.
One of my best childhood friends had a brother with moderately severe cerebral palsy. With my father’s holy grail in mind, I watched this family cope. What an inspiration the family was to me and what a profound opportunity for me in simply watching them. How much I learned of what mattered to this family, what they wanted and needed from their health care and education professionals.
I learned about the small things in their daily life that were made more difficult by Paul’s physical disability and how important even small adjustments if they made the difficulties a little easier. Although his physical disability was so severe it made walking a challenge and understanding his speech very difficult, his mind was sharp, curious and strong. To this day I carry this lesson: No matter what the book looks like on the cover, respect what is inside. You might connect with something that will surprise you, teach you, or offer you gifts of insight – into life’s deepest mysteries.
I have been with and worked with other families with children with disabilities since. I’ve learned more lessons. These families often become – of necessity – highly protective. This may come across as aggressive and belligerent. The chronically ill or disabled are vulnerable to disrespect, rudeness and to a lack of consideration when services are designed or dispensed. They are susceptible to every kind of abuse and discrimination. When Paul was growing up he did not have the benefit of many laws that now protect such children. Even now, these laws are sometimes not adhered to fairly.
Mothers and fathers, brothers and sisters, and children of the chronically ill and disabled often need to become strong advocates and this often means engaging in serious conflict. It is understandable if they sometimes take on qualities of the warrior. And it is understandable if they begin to view aspects of the world as the enemy – and to assign bad motives where there may only be ignorance.
In this context it is possible to respect the sometimes prickly approach families can take on when advocating for their own.
Paul’s mother and father were strong, intelligent allies. With their support, Paul blazed trails many would follow – so that eventually he lived independently and meaningfully. I think it was hard for both of his parents to let Paul go – especially hard for his mother. In my observation, the strong (sometimes ferocious) parental protective instincts brought out by chronic illness and disability sometimes lead to being overly protective – to the point where a child or an adult might be protected from things they need to experience to be able to grow. I would say Paul’s parents did not do this but it helps to understand how hard it would be to eventually let a person fly on his own – and what an empty feeling life might take on for the letting-go parents in the absence of what has been the most important part of their life.
As I’ve tried to be a good student exploring my father’s belief that a good physician is a respectful caring communicator, I observe that all the lessons have been taught me by these families themselves. I don’t think I ever told Paul’s family how important they were to me; or all the other families and patients with chronic illness or disability how much they taught me.
Here’s my chance. Thanks.
To your Health
Note: thanks to Harry – Paul’s brother for helping me with this piece!