I’ve admitted that sometimes I let fear and stress and exhaustion get the better of me, of my reactions and responses. I have a feeling—though the memory is hazy—that November 25, 2017 was one of the days I didn’t respond with kindness or understanding.
One year ago today, at 10:22 a.m., I texted a friend and told her that I’d just caught Matt walking up the stairs with our biggest kitchen butcher knife in order to open a small box of batteries, which he was also bringing up the stairs.
After reading the text messages, I vaguely remember this morning, finding Matt halfway up the stairs, the kitchen knife pointed up. I more than vaguely remember the surge of panic and terror. Matt was unsteady on the stairs on a good day. I often casually walked behind him or in front of him hoping to catch him if he fell (or, more likely—given that Matt was bigger than me—lessen the impact of his fall by falling together). To walk up the stairs with a butcher knife in hand for no rational reason was inviting danger. I told him as much and his anger surged. (Likely in large part due to the Dex.)
Back in September, I introduced the idea that Matt and I were arguing—bitterly and frequently—which was something that we (the real Matt and Elaine) never did before entering the world of Glioblastoma. I haven’t written much about those arguments, mostly, because I don’t remember them all. They were largely irrational and circular and forgotten within minutes. The argument on November 25th was no different.
I vaguely remember my voice sounding too shrill, too desperate during the argument that ensued. Matt couldn’t understand why I didn’t want him bringing a box of batteries upstairs to be opened with a large kitchen knife that he was also bringing upstairs. He was angry with me. I remember my own temper flaring, too, along with frustration. Because it seemed obvious to me that Matt shouldn’t walk up the stairs holding a butcher knife. How could Matt not agree with me now that I pointed it out? How could we be arguing about butcher knives and batteries? The entire argument was ludicrous and surreal, in my opinion.
Then again, in any argument, doesn’t each party always think he or she is right? The nature of an argument is the clash of two firmly held opposing beliefs. One year later, a tiny part of me can’t help but wonder whether I overreacted.
The difference between the argument on November 25th and all the other ones we’d had is that this argument is memorialized in text messages. After the argument, I texted a friend because I needed a lifeline back to a world that wasn’t warped by Glioblastoma. I needed to confirm that I wasn’t wrong in asking Matt to open the batteries downstairs, ideally with scissors. Because Matt had been so angry and passionate and sure that everybody walks up stairs with knives to open batteries that I’d begun to doubt whether I was rational. Essentially, I needed confirmation that the sky was still blue and the sun still rose in the East.
The rate of caregiver burnout is high among Glioblastoma caregivers. I’ve touched on this topic often, tried to explain how relationships are renegotiated and the difficulty in caring for someone who has vanished in so many of the ways that matter. For me, one of the greatest challenges I faced was when I found myself arguing with Matt about topics that seemed ludicrous and surreal— whether everyone knew it was New Years Eve, whether he could call Duke to order food, whether butcher knives could be dangerous—with the same energy that I once used to argue about politics and plot lines.
One year ago today, I saw Matt on the stairs and instead of finding a bit of patience and understanding, I panicked. We argued. Knowing now that we only had ten weeks left together, I wish I’d chosen patience over panic. But I also know, thanks to hindsight, that so many of these final seventy days were spent desperately trying to make it through the next minute and we did the best we could. Sometimes our best wasn’t perfect.
And I suspect that’s okay. Always.