For the last week or so, I’ve tried to capture a snapshot of our life, the changes I was seeing in Matt and how we (our family of four) were adjusting. I noted the frequent naps, that missing flash of humor and wit, and the imperfect clarity of thought. But the other struggle in these days was my own paranoia.
Between all we’d experienced, all I’d read while lurking on the brain cancer forums, and my own overactive imagination, my thoughts were constantly bombarded by worst case scenarios. Which meant when I wasn’t with Matt, I was bugging him with calls and text messages vaguely disguised to look like casual chatter.
On October 26, 2017, Matt didn’t have any appointments. No therapy, no scans, no follow ups. So Matt slept in. He slept through the kids getting ready for school and the bus’ departure. He slept and I talked myself into a Bar Method class. I told myself that Matt had been stable on his feet and capable of traveling up and down the stairs–he didn’t need my help. In fact, he wanted nothing to do with even my offer of help. He would be okay on his own in the morning for a little more than an hour.
I left him a banana and his morning medication—anti-seizure pill, probiotics, vitamins—on his nightstand and left for my class, which lasted one hour, from 8:30-9:30. At 9, I still hadn’t heard from him and I couldn’t stop the onslaught of worrisome scenarios. At 9:04, I texted him and said I was coming home.
I found Matt on the couch, showered, dressed, and perfectly safe. He’d taken the medicine I’d left him, eaten the banana, and poured himself a bowl of cereal. He couldn’t understand why I was so worried and flustered when I arrived home. He hadn’t answered my calls or responded to my text messages because he’d been having trouble using his phone, but he was fine.
And he was. Although, I’ve noted that fine is relative. What was fine on October 26, 2017, would not have been fine on April 10, 2017.
And then the cycle repeated. That afternoon, I had to run out of the house for another few errands and Matt didn’t want to come. G’s mother-daughter dance was the next day and she needed a cowgirl themed shirt, H was on the schedule to provide the soccer snack for the Saturday soccer game, and both kids had a slew of after school activities. Every minute out of the house was marked by worry. Every time, I walked in the door, my heart in my throat, Matt was fine.
Experience should have informed the worry, calmed the constant fear. But it didn’t. I could no longer believe in the principle that Matt would be fine because he’d always been fine. Matt hadn’t always been fine, and the tumor that had been the root cause of all those moments when he hadn’t been fine was still in his brain, still growing and spreading and failing to respond to the poliovirus.
Many times, well-intentioned friends asked if I thought we needed help at home. Each time, I said no. Matt didn’t want a stranger in the house. He barely wanted my help in the house. Why? Maybe because he couldn’t see how much he’d changed—and who can ever really see themselves clearly enough to see they’ve lost something inherent to themselves. Maybe because he was stubborn and determined not to be seen as helpless. Maybe because he was Matt, and he had that amazing brain that could push away the symptoms enough to function.
Why did I go along with his refusal of help? Maybe because I couldn’t stop trusting Matt more than myself. Maybe because I didn’t want to admit something to myself. Or maybe because I knew, for Matt, hope looked like independence and I couldn’t take that away.