At 6:41 in the morning, on September 8, 2017, Matt’s mom arrived to pick Matt up for his early morning appointment at the children’s eye specialist somewhere down in the southwestern part of New Jersey. They were in the waiting room by 8 and seen by the doctor by 8:30. At 9:17, Matt sent me a selfie. In it, he was smiling inside the exam room, wearing strange looking goggles on his head. By 10:23, Matt and his mom were eating breakfast at a diner and Matt had plastic attachments that worked like reverse kaleidoscopes on his glasses. They made his vision singular, but blurry. I asked whether the glasses helped and he said without the glasses he couldn’t see, but with them on he could. That was good enough.
We cheered over text message.
Later in the day, Matt texted me the exciting news that he and his mom had found a doctor (or a place) that could create permanent lenses from the prescription ordered by the specialist. By 6:12 that evening, Matt texted me that he had his glasses with the permanent lenses. He told me he could see, though he felt as if he were in a fishbowl.
We breathed a sigh of relief. Matt could function again. He could leave for his work trip on time. Hopefully, Matt could even regain some of the independence he’d lost—maybe not with driving—but in other ways. Maybe, even, Matt and I could come back to ourselves a bit.
Because the truth of this week is that Matt and I weren’t ourselves. The dynamics of our relationship had shifted, our marriage no longer looked like it did just a few weeks prior. Between the lines of text message, in the moments we weren’t working together to find prism lenses, we were arguing and on edge.
Yesterday, I suggested that it was easy to tell myself things were better, even though the reality in front of me suggested otherwise. I promised to expand upon that idea and tried to buy myself time to collect my thoughts on the subject. But, even the twenty-four hour delay hasn’t helped me find the words to explain. Without the words to describe these days, the best I can do is to share an example of the reality we were living, wherein Matt’s mood and logic were subtly faltering, and explain why I often used the term involuntary gaslighting to describe these weeks.
The day before Matt and I had argued—bitterly. A plumber had come to check on a leak in the bathroom. Matt had repeatedly asked him about an electrical issue (because when it rains it pours in homeownership and, as a rule, if the bathroom is leaking, a circuit breaker elsewhere will fizzle). The plumber repeatedly told Matt he wasn’t insured, qualified, or trained in electrical issues. As I had before, I didn’t intervene—it felt like a betrayal—but Matt was insistent and persistent and the situation became uncomfortable. After a time, I stepped in, taking the plumber’s side. The plumber left and the electrical issue remained unaddressed. (Fun fact: one year later, the electrical issue remains unaddressed, though it’s under investigation.)
Matt was angry with me for letting the plumber leave. I was angry with Matt for being angry with me, for failing to listen to reason, and ultimately, for failing to trust me. In looking back, in closing my eyes and remembering the way Matt and I stood across the room from each other, both fuming in a way that was foreign to us—Matt and Elaine, the real Matt and Elaine, didn’t argue like that—, I realize now that I was also angry at the tumor, for stealing my husband who would have joked with the plumber and teased me for pretending to know anything about electrical work, and angry at myself, for not finding a better way to handle the situation overall.
And that involuntary gaslighting*. As I was trying to get Matt to see reason, I was also drowning in self doubt. Matt was so sure that the plumber could fix the electrical issue, and I was so accustomed to trusting Matt when he was that sure, that I was left wondering if maybe Matt was right and the plumber could have fixed the electrical issue if I hadn’t intervened. Maybe I’d made a mistake. Worse, maybe my mistake had been a betrayal and Matt’s anger was justified.
Even as I sit and write, one year removed from this argument, logic leads me to believe that the plumber could not have fixed the electrical issue, and Matt’s insistence was a function of the tumor destroying parts of his rational thinking. And yet, a nugget of self-doubt remains. Even a year removed from this argument, my instinct is still to trust Matt over myself.
This argument is a beginning. The arguments grow more bitter and more irrational, and sometimes, I looked around and didn’t know what to believe anymore, Matt’s reality or mine. Another cruelty of brain cancer.
I don’t know if brain cancer manifests this way in all cases. I suspect that it doesn’t. I don’t know if Matt and I had an extra difficult time renegotiating our relationship in part due to our long-established dynamics, but I suspect, possibly, yes. What I do know is that these were the days when I was awash in guilt (how could I argue with my clearly symptomatic husband), frustration (if I could just get him to see reason, we’d stop arguing), and terror, because I was coming to realize the person who’d been steering the direction of our lives for the last twelve years wasn’t able to steer any longer; I needed to steer us for a while, trust myself, and what if I didn’t know how?
That night, Matt packed for his trip without wearing his new glasses. At 9:43, he texted a friend to say he hadn’t worn the glasses much, but he felt confident that with a good night’s sleep, the glasses would help him get through the busy day of flights and hotel check-ins and corporate dinners.
We knew we still had a long road ahead of us. We knew we weren’t even through this particular bump in the road. But one year ago today, the argument had passed, the hard feelings had faded, and we celebrated a victory—the prism lens glasses. Despite the frustrations and fears, one victory was enough to keep us hoping for more.
*Wikipedia defines gaslighting as a form of psychological manipulations that seeks to sow seeds of doubt in an individual making them question their own memory, perception, and sanity.