One year ago today, while I took G to a birthday party—and dragged H along with the promise of ice cream—Matt watched football with a few friends who’d come over bearing snacks and stories. When they left, I texted my friend and said: I think Matt had fun. I couldn’t really hear them talking, so I’m not sure how Matt did.
What I meant was: I’m not sure whether his amazing brain allowed him to hide the truth of the mental changes he’d so far experienced. I’m not sure whether Matt was Matt.
I remember when he told me these friends were coming. I hadn’t realized he’d been in touch with more than a very tiny, very close circle of people. I remember being on edge about the visit. Matt wasn’t himself—his humor, his energy, his spark—and not many outside of that very tiny, very close circle knew the extent of that truth. And that was by design.
When Matt was first diagnosed in June 2016, he didn’t want anybody to know about his disease. He didn’t want pity or sympathy. But also, he didn’t want to be seen as a cancer patient. Matt believed— and I couldn’t disagree—that when someone heard another person had cancer, an image formed. A bias. A specific kind of look and a tone of voice entered even casual conversations. Matt didn’t want that. Ultimately, he needed time to come to terms with the word cancer for himself.
And yet, even after the news spread, we (Matt and I) still kept most of the details of his illness and his treatment to ourselves. Partly, out of a desire to avoid pity and sympathy and that look, which was inescapable (though understandable and always from a good place). Partly because there’s no easy way to bring up brain cancer.
And partly, because I was operating under a very specific hope-filled premise: Matt’s condition—his deterioration—was only temporary, like it had been in April. (The logic: If he’d recovered from a significant mental decline once, he’d recover again. The darkness was the exception, not the rule.) I told myself that this version of Matt wasn’t permanent. But I also told myself that I was seeing things others people didn’t see because I spent so much time studying Matt, watching his facial expressions and listening to his jokes. I found some comfort in telling myself that I was overanalyzing—that the problem was with me, and not him.
But if his friends saw what I saw? Then I might start to see a truth I was refusing to see for myself. If I saw the truth of Matt’s deterioration through their eyes, I might not be able to unsee that truth; I might start to doubt the temporariness of his condition.
Even a year later, I have no sense of “how Matt did.” I don’t know whether his friends noticed anything was different, whether Matt’s amazing brain allowed him to be himself, or whether I was, in fact, over analyzing. I know that Matt didn’t always want people to see him in his altered state, but he loved every second of spending time with friends when he could. Brain cancer is full of contradictions, and this is just another one.
I know that “how Matt did” doesn’t truly matter, because I know Matt had a good day. I know that even if he wasn’t himself, he got a taste of normal, and he didn’t have to go chasing after it.
What I know is this: the best way to keep hope burning is to infuse the day with a little normal. One year ago today, Matt didn’t have to go chasing after his normal, and maybe that meant his hope could burn a little brighter. And, if that’s true, what else really mattered?