One year ago today, Matt’s second to last day of whole brain radiation, Matt’s mom drove Matt to Columbia for his appointment and I had a few hours away, a “day off” from caregiving.
When Matt left with his mom, I took a Bar Method class and got a haircut, bought things I didn’t need at Target and chatted about nothing on the phone with my oldest childhood friend. I could pretend I’d never heard the word Glioblastoma. I had a few hours to revel in the quiet of the house and in the knowledge that I didn’t have to be hyper-aware of every moment.
And every single second of those few hours felt like a betrayal. After all, Matt could never be granted that same “day off”. From the moment he was diagnosed, he could never escape the word Glioblastoma. I felt like a traitor for even wanting time to myself. I felt like I was abandoning Matt for even feeling like I needed or wanted a “day off”. Even thinking “day off” felt somehow cruel. Because Matt was my husband, not my job. And wanting a “day off” was coming close to acknowledging that our relationship had transformed from husband and wife to caregiver and patient. On December 19, 2017, I couldn’t admit something like that, to myself or anyone else.
I remember wondering how it could be that I was completely devoted to Matt’s recovery, prepared to give of myself whatever he needed, but also desperate to have a few moments during which I didn’t even think the word cancer.
The answer to the question might simply be to point to the contradictory nature of brain cancer, how so often I found myself holding two contradictory beliefs at once. The story of today is no different. I wanted to be with Matt every second—to keep him safe, to watch for changes (either good or bad), to just be with him because that felt like the place I needed to be—but I also needed a break from a life that had become unrecognizable.
My mom has often repeated to me a Russian proverb about motherhood, which loosely translates to: in order to take care of your kids, you have to take care of yourself. It’s advice similar to the advice caregivers (all caregivers) most often receive: take care of yourself. It’s not bad advice. It’s great advice, actually. But it’s easier said than done.
One year ago today, in theory, I could pretend I’d never heard the word Glioblastoma. Instead, I spent the day worrying whether Matt had taken his pills on time, whether he’d given his mom a tough time, whether he was having one of his better mornings or not. I couldn’t turn off the hyper-awareness that had become fused into my thought process. And also, I spent the “day off” hoping to return with the energy I needed to keep fighting the battle against that invisible monster for the both of us.
Being a caregiver for a brain cancer patient (maybe for any patient) is an all consuming job. Every waking second—sleepless nights, included—is devoted to giving care. And taking a “day off” mentally isn’t an option, but it’s also a necessity.
That night, G took a picture of Matt, me, and Coco—the dog Matt always said he disliked, though Coco was most often found curled up beside him. It’s the last photo of Matt and me that I have. In the photo, I cannot recognize Matt’s smile. I can’t recognize him, really. I look kinda tired. But we were together and we were smiling and we were simply doing the best we could.