(Image inspiration thanks to a good friend and fellow extreme caregiver who knows who she is!)
I subscribe to many caregiving blogs, in particular blogs that explore the lives of many mothers raising kids with disabilities. Among these blogs there is a ubiquitous narrative of the warrior mother – a fierce, superhero mother who rises above all odds and becomes a super-caregiver of sorts. As a mother raising a pretty complicated kid I get the part about becoming a fierce advocate for your child. Life demands that pretty quickly. But the part of the narrative I openly struggle with is this idea that we extreme caregiving mothers can walk through our days smiling in the face of suffering, and transforming moments of suffering into journeys of triumph and growth. This public perception of the superhero mom exerts chronic pressure on many caregivers to take difficult moments and turn them into something inspiring and triumphal, even if one’s story more often feels like you’re the coyote being flattened by a train rather than superwoman leaping tall buildings with a smile on her face.
There seems to be the ever-present need in our society to take any story, even stories of difficulty, suffering and pain, and make them into some form of a Disney movie. As a result of this constant pressure to turn life events into a Hallmark moment it can mean that for many of us who have difficult stories, telling one’s story starts to feel like you are being overly negative when, in fact, you’re being realistic. As someone who talks about caregiving in a brutally honest manner I have found that by being honest – by talking about the difficult of being the coyote on the train tracks – I sometimes get quickly labelled as a pessimist – a negative Nellie!
I struggle with this label, because I generally feel I am an optimist, granted one operating within the realities of my life. I would argue that it has been my hope and my ability to see favourable outcomes during difficult moments that has seen me through a lot of the hard stuff. But early on in this journey I also learned to nurture a very realistic hope. To hope with wild abandon, while momentarily helpful, would often in the long run leave me chronically broken-hearted and bereft. In other words, it was good to live in hope knowing I was the coyote and not the roadrunner!
I went through a period of time when I wouldn’t publicly share my story because talking about being the coyote began to feel too dark. I wasn’t conforming to the expected story lines about disability and triumph and there was this sense that I was, at some level, disturbing the listener’s more Disney/superhero version of disability and/or caregiving. That by being realistic I was interfering with an expected happy ending. In the case of other parents raising special needs kids I was worried I was crushing hope which was something I really didn’t want to do. But my story didn’t feel like a Disney movie and I was tired of bending my narrative to some storyline that made others feel good about disability or caregiving while leaving me alone, unsupported, and frustrated. I was also worried that by feeding into the constant narrative of caregiver triumph I was perpetuating this stereotype of the superhero caregiver when I was interested in nurturing a more nuanced and realistic story of caregiving. I wanted to talk about the very real difficulties of living my life as the coyote rather then pretending I was superwoman.
These days I speak openly about our story, warts and all, in a variety of contexts. I talk about lying prostrate on the train tracks as trains run over me. It can make for some difficult stories.
A few weeks ago I gave a keynote address at a nearby university talking about the demands and quiet desperation that many extreme caregivers live with, but are often implicitly and explicitly required to mute. Society exerts a fair bit of pressure on caregivers to offer an inspiring and hopeful story even amid situations that are brutally difficult. Even as I have grown more comfortable with telling my story of being the coyote on the tracks I struggle with situations when I get up and share my story with unadulterated honesty. I am chronically anxious about being seen as a dour, overwhelmingly negative person when my goal is to bring a more realistic and nuanced story of caregiving into the public sphere. It is hard to tamp down that societal pressure that requires one to smile and offer an inspiring, feel-good story when one feels like a flattened cartoon character.
A few years ago I was speaking to medical students and I was asked a question about what sort of profound learning I had acquired from raising my son. I didn’t answer it. Rather I pushed back and called the students out about romanticizing difficult journeys. I reminded them that as physicians they had an obligation to hear all stories and not to structure questions that required people to offer a particular type of palatable answer. If I am required to always offer a narrative that turns my son’s difficult journey and suffering (and mine by extension) into a journey of personal growth and learning then, to me, that story not only becomes offensive but it perpetuates a world where people who are suffering feel their stories are taboo. This need for happy stories supports a troubling public narrative that mutes voices of suffering, and as a result, keeps many suffering in silence while ensuring the rest of the world keeps the happy endings they so desperately need.
Let’s avoid demanding that the coyote tells the roadrunner’s story. Let’s ensure that all stories have a place in our community.