It was on this day two years ago, at a backyard party, that I looked over at Matt and felt hopeless. And, honestly, irritated and impatient. We had argued in the car on the way to a party (something that was happening too frequently), parked, and sat in stony silence for a few moments. We got out of the car and tried to make the best of what was supposed to be a fun day. But I remember looking over at Matt during the party and thinking I couldn’t recognize him anymore.
He walked around. He participated in the party games. He probably made just enough small talk to conceal his altered mental status from anyone stopping for a quick conversation (that amazing brain). But he wasn’t Matt. The Matt I married would have been walking around with a smile on his face and cracking eye-roll worthy jokes with our friends. He would have been telling long stories, ranting about a fantasy sports loss, or making plans for the next party.
That’s my version of the day. When Matt told doctors about this day, he didn’t tell them any of what I’ve just shared. Because on June 4th, 2016, the first physical sign that Matt wasn’t well appeared.
Back in 2016, while Matt was in the hospital that first week, I didn’t share what exactly was the factor that set off our warning bells; I thought Matt would be embarrassed if people knew what had happened. But, turns out, he wasn’t, and he freely shared the story so I think it’s okay if I do, too.
The medical term is incontinence, which is defined as a lack of voluntary control over urination or defecation. Matt preferred to say simply, “I peed on myself.” In his version of the story, he also made sure the doctors knew he was wearing a kilt over his shorts (it was a theme party!) and that he was at a beer BBQ—which isn’t actually accurate. His own personal fun facts.
I didn’t learn about this episode of incontinence on June 4th. When Matt found me at the end of the night and said he wanted to leave, I didn’t think there was any reason for it other than that he was still in his bad mood.
On June 4, 2016, I could see that something was unavoidably wrong with Matt, but two years ago today, it didn’t even occur to me that something physical could be causing his personality change. It didn’t occur to me that something tangible could be impacting something as intangible as his personality. That was the first cruel lesson brain cancer taught us.
A year later, on that road to the miracle cure, Matt played tennis for the first time in a while. Though he didn’t do well, he was excited about getting back to doing something he loved. That night, we had friends over for dinner. Matt didn’t “pee on himself.” We didn’t argue. I looked over at Matt and didn’t feel anything near hopeless. Why would I? We were doing so much better than last year. We wrongly believed we’d already survived the worst.