In a very much heart-rending conversation chat this evening between two of us caregivers, this question I was asked:
And how do we write about this? How do we write when this story is our own and not our own?
I started to answer, but I stopped. One, I was walking laps around the top of the parking deck before leaving for home, and any reply might have been riddled with swipe text errors. Two, I didn’t want to interrupt the flow of the conversation. It was important just then to read the messages. But I want to answer it, even if just for myself, as I think it is an important question.
I’ve struggled with this in writing these posts about being caregiver. The stories are a mix of mine, of hers, of ours. I can legitimately only tell the stories from my perspective, save when I ask her to tell her side and to allow me to write that. She is not interested in that. So I write from what I know and observe. It’s a shared story, but from one side.
The more important story is probably hers, as I think is likely true in most patient-caregiver stories. By definition, caregiver is a supporting role. It’s not the leading role.
When my friend asked the question above, my thoughts went to a scene from the Lord of the Rings where Frodo is telling Sam that the great stories never really end, they just continue with new people, new heroes. And that’s the thing, right there. We are all part of one really big unfolding story with lots of side stories.
And lots of heroes.
I’ve said it before, sometimes we may need to be our own heroes. By being our own hero, we set an example for others, especially our children and others close to us. I continue to be amazed at the ability of individuals I see on a regular basis doing things I know are harder, or I suspect are harder, than what many other people imagine. Just getting to an upright position and moving forward can be an act of courage when the day’s challenges of care (and hopefully some self-care) stretch across the horizon like deep sand. Doing it each day when it seems that the best you can do is grasp at straws of hope, or ignore any thought of hope because it is a distraction, is phenomenal effort. When those of us who’ve been there encounter a kindred spirit in the midst of such life, we experience empathy, terror, and a desire to help. The terror shows up simply because we remember.
Heroes are everywhere. Their stories need to be told. We need to tell our stories to keep in front of us why we are doing what we are doing, why we keep at it, and who we are. The others in the story can tell their story or not because it is their story. Our story is ours and is just as deserving of the telling. Because we are the center of our story, we are worthy of our story. Caregivers tend to subjugate themselves, to lose sight of the fact that they have their own story. We should not forget that we have an existence and story of our own. And we can be our own hero if we need to be, and are willing.
Telling our stories, telling my story, is part of self-care. It reinforces that I exist. And reminds me that I can be more than just a bit player.