Caregiving: May 7, 2022

I’m up early again after a sleep of the dead, writing from my bed with a blue sky outside my window. When was the last time I awoke with both the time and the quiet to just be? Perhaps in part self-created, in my life there is always somewhere to go, something that needs doing, someone who needs me: I am, at heart, a caregiver.

The term caregiver has so many negative connotations, particularly that there is an implicit hardship to the work. That feeling of burdening others by receiving care is the very reason it’s difficult for me to ask for or accept help that can’t immediately be reciprocated, why I am a huge fan of carpools and Secret Santa gift exchanges. But caring for and about others is a role that is central to my identity, and it gives me purpose and fulfilment, not resentment, to offer to someone my time and my energy. It is the act of being a mother, a spouse, a physician and ultimately, it is simply who I am as a person.

Yet in this little universe in Cleveland, my caregiving role compresses. The number of spoons I spend in my day caring for others diminishes, and more are available for me to care for myself, to reflect, and maybe in some ways, to grow. And to heal: I’m certain that if this stem cell transplant could have been done in Toronto, I wouldn’t be doing as well as I am here.

I reflect about being cared for by my mother, here with me officially in the role of my caregiver. I am conflicted. Sometimes, it can feel like moving back into my childhood home, with the same need to keep vigilant against reverting to my squirm-inducing teenage self (sorry again, mom). And for someone who has always attended medical appointments alone, it’s a strange dynamic to have another person in the room - to think that anyone else’s opinion on my health should have a voice. But at its very essence, the relationship with one’s mother is about being cared for, and it feels in a way natural to accept being looked after by her. Somehow it is able to still feel like a partnership, and I don’t feel like a burden.

** Spoon Theory was originally created in 2003 by Christine Miserandino to help build understanding and empathy in friends and family of people suffering from chronic illness. Spoon Theory was originated to describe the intentionality required in daily choices for someone with a chronic illness.

*** Also - tomorrow brings more spoons. But subtract four or more if you're having a relapse, and two or three if you had a bad night's sleep, stayed up too late or have a cold.