The past weekend I participated in an organized 80km group hike. As often happens for stretches of the hike I walked alone, but there were also parts of the hike where I joined another hiker, or a group of hikers. On the second day of the hike I enjoyed chatting with a lovely woman for about 10kms. Her name was Paula. We talked about our kids and our families and it eventually emerged that I was parenting a child with signifiant special needs. Paula shared with me that her adult nephew also lived with cerebral palsy and that her sister-in-law had spent recent years speaking about caregiving. I wish I could meet her sister-in-law. It sounds like I would really like her!
Paula was lovely and told a wonderful, yet at times sad, story. As she concluded around the time we were arriving at a check point, we all have a story to tell. I wish I learned her last name so we could have stayed connected. She told good stories.
I spent many of my early years parenting Matthew feeling very alone. I was convinced that that my story was sufficiently unique that there were few who could relate. In support group meetings my child tended to be one of the more complex children which added to my feeling of isolation. The notion that disparate stories might connect with mine was a place in my journey I hadn’t reached yet. I desperately searched the bookstore shelves hoping to find a book written by a mother who had lived my life. At the time there weren’t any.
In later years, as I read about narratives of chaos thanks to Arthur Frank, I learned that this experience is not uncommon – though I won’t suggest it is universal. When you are so deep in your own narrative of chaos, which I was at the time, it can be hard to connect with any other stories you might hear. It isn’t that the individual lacks empathy, or is being selfish or egocentric, but rather at that point in time their particular story is so overwhelming that it becomes all consuming. Your view of life, at least for a while, becomes myopic. You are so concerned with keeping your own head above water, that seeing that lots of other heads are also out bobbing in the waves may take a while.
As I began to emerge from my own story of chaos and was more able to hear other stories of caregiving (with or without the chaos part!) I found that I increasingly connected with these stories. The stories of parents of kids with autism, cancer, or mental health disorders really resonated for me. I could relate to many of the feelings that those engaged in spousal or elder care articulated. And as I listened more, I found that many of the themes of my own story could also be heard in stories of divorce, death, separation, and other form of loss people experienced.
And then the light bulb went off. I wasn’t alone. Most of us by the time we have been adults for a while have a story to tell. It is pretty difficult to get through this life without experiencing loss, trauma, or suffering. What perhaps was different about my story was that is was fairly public. People who met me could see what was I coping with by simply looking at my son. Others’ stories of loss and suffering were more hidden, and less often told, but were no less traumatic or overwhelming.
Among the special needs parenting blogs there is a strong sentiment that unless you are a fairly similar parent other parents probably don’t “get it”. And I don’t disagree that there are parts of our stories that don’t overlap. But I think if we listen carefully to one another we might find we have (a lot) more in common than we first thought possible.
It is too bad that our society is so afraid of difficult stories. I think one of the reasons I felt so alone is that we often avoid sharing our scary stories because our society really prefers we pull up our socks, put on our happy face, and carry on. Communally we often spend a lot of time shutting down these stories of chaos. The fact that there are times in life that isn’t possible, or healthy, is irrelevant.
Would people who are suffering feel less alone if we were a bit more transparent with our stories? Since most of us seem to have one.