Arthur Frank has written an excellent book called The Wounded Storyteller: Body, Illness, and Ethics. As an extreme caregiver I have found it to be one of the most helpful books I have ever read. My son is very visibly disabled which means that people in my community are very quick to jump to conclusions and form their own narratives about my son and my caregiving. If I had a dollar for every time someone came over to me offering their interpretation about how meaningful my caregiving journey must be I would be a very rich woman.
VERY RICH INDEED!
People often assume that when I care for my son I see the face of God in our midst, or that I have come to some deep spiritual understanding while caring for one of the most vulnerable members of our society. These stories are pervasive in our community. For example, L’Arche founder Jean Vanier, and fellow L’Arche member Henri Nouwen, have written extensively about the deeply spiritual experience of caring for people with significant disabilities. We’ll talk another time about how their experiences don’t really match a parent’s. Ten minutes on the internet and you will find all sorts of memes about the deeply meaningful journey of caregiving. And yes, caring for my sons – all of them, able bodied, and the one with a disability – has been the stuff of some of my most profound spiritual moments. But more often than not my caregiving journey has been more about being elbow deep in various bodily fluids, half asleep, than it has been about seeing the face of God amid deep spiritual reflection.
As Frank reminds us, we who have grown up with the fix-it medical model, and might I add Disney and Hollywood endings, have this desperate need to find happy endings everywhere – even when that happy ending is elusive. That means that if we can’t fix the problem, like in the case of severe disability and extreme caregiving, we need to find some other alternate happy ending – like seeing the face of God while caring for the most “vulnerable”. Frank refers to this need to find a happy ending even in situations where such an ending is not readily apparent as a quest narrative.
Because, you know, how many of us get to see the face of God? This extreme caregiving stuff must be some rare gift bestowed only on those who are very special. And, if they are special, then clearly they have what it takes to live that crazy, exhausting, caregiving life.
But there is another narrative Frank talks about – chaos. Society really doesn’t like the chaos narrative. It is messy, painful, overwhelming, out-of-control, and very hard to describe. Ask any extreme caregiver to tell you a bit about their story and they will likely talk a whole lot about chaos. And, for the record, just because we tell a story of chaos and exhaustion doesn’t mean we don’t desperately love our children. In fact, it is because we love our children that we have allowed our lives to become chaotic and overwhelming. But you see, people really don’t like when others tell a story of chaos. In fact, even as I write this blog post I struggle with the need to soften, or qualify, my statements lest some think my honesty somehow means that I don’t unconditionally adore my son.
Listeners will often do anything in their power to shut a chaos narrative down – like telling the caregiver how lucky they are to see the face of God, or how lucky they are to have this deeply spiritual journey of caregiving, or something like that. Goodness knows we can’t be just honest about the fact that this chronic caregiving often just sucks.
The next time a caregiver talks about how overwhelming their life is do them a favour and don’t search for the “happy moment”. Make them some tea, sit down, and just listen. Do not be afraid of their chaos. Join them, for a time, in their chaotic life and just be present.