Dominik Parisien
Caregiving can feel like the province of ghosts.
It is an ever-shifting world, a regular interplay of light and shadow, of long, sleepless nights and anxious days. It is a world of need.
A great need—emotional, physical, psychological—may sum-mon a caregiver. It is often in those moments of illness, hurt, pain, that caregivers seem to manifest from amongst friends, family, or even strangers. They were there all along—caregivers surround us—but it is mainly in those moments of terrible need that we notice them.
In a way, this is not surprising. Many of us think of caregivers as individuals on the periphery. We are the protagonists of our lives, and they assist us, they help us. We think of caregiving as a sort of existential Limbo, a role someone plays for a time—sometimes short, sometimes long—in our narrative. The matter is simple: caregivers are connected to our needs, and if those needs are resolved then the caregiver’s role and importance often shift. They become less of a focus. In addition, many of us do not like caregivers to linger, to remain in that mode, because caregiving involves what can be an uncomfortable truth: that we need help. It is often difficult admitting that.
As a result, it is easy to let caregivers fade.
It is not necessarily that we do not appreciate their support, though this is certainly the case for some. Rather, in our focus on ourselves we often fail to recognize the needs of the person fulfilling our needs. In missing some aspects of their humanity, we make caregivers a little ghost-like.
The Sum of Us asks us to look beyond. It chronicles across multiple genres the lives of caregivers, their strengths and weaknesses, their dreams and personal doubts, their compassion and even their frustration. It lets us explore the worlds of those who navigate pain and healing, hope and despair, attachment and separation, recovery and death. It traces different modes and trajectories of caring, moments of caring or even lifetimes.
The Sum of Us asks, “Who cares for the caregivers?” One part of the answer is—other caregivers. Another is you—the reader. By picking up this anthology you demonstrate that you care about caregivers, that you recognize their personhood, their inner lives, matter beyond the myriad of ways they can help you. Perhaps you are even a caregiver yourself; most of us are at some point in our lives, in some fashion.
As an individual with a disability who has been surrounded by caregivers his entire life, and as someone who has done volunteer work with the elderly for years, I thank you for your attention to the caregivers in The Sum of Us.
They matter, because their stories are yours, and mine, and all of ours.
—Dominik Parisien, Wendover, 2017
Co-editor of The Starlit Wood: New Fairy Tales(Saga Press)