July 14, 2017: Renegotiating Relationships

Thanks to the photos saved in my phone I remember that one year ago I went to G’s cheer competition at camp. The text messages remind me that afterward, G, H, and I spent the afternoon with my cousin who was visiting from out of town. My imperfect memory is the sole reminder that on the morning of July 14th, Matt and I met with financial advisors to discuss unpleasant, but necessary matters—guardianship for the kids and retirement plans, etc.—and Matt said something like: well, what if I get hit by a bus.

Our latest disastrous MRI did not prompt this meeting. We were not “getting our affairs in order” as Sloan had suggested a year prior. We were simply checking off the list of to-dos like any other responsible couple.

But I remember the zing of heat down my spine when Matt spoke these words in relation to future planning. After Matt’s diagnosis, he and I very carefully, very purposefully, never got anywhere near the topic of what if he wasn’t here. Call it hope or denial or a fear of inviting in bad energy, but we simply didn’t.

I remember I turned to him and said (something like): don’t even think it.

But before his diagnosis, Matt often used this bus phrase, mostly as a way to encourage me to learn the log-in for our bank account or pay attention to the mortgage or utility bills. Matt would tell me that I should know all the administrative minutiae of daily life in the suburbs. I’d shrug, flash him my sweetest smile, and tell him I didn’t need to know because he was so good at knowing it all. He’d say, well, what if I get hit by a bus or something. I would tell him, well don’t get hit by a bus, and return to dreaming up fictional characters with fictional problems to be resolved with fictional happily ever afters.

It was never that I was incapable of learning the log-in or paying attention to the mortgage. (As proof, in the years Matt and I dated I’d applied, gotten accepted, and graduated law school with Order of the Coif honors.)   It was always just that I trusted Matt more than I trusted myself.

Maybe because I met Matt when I was twenty-two. Maybe because Matt had the take charge personality and I didn’t. Or, maybe he was simply better at making it look like he knew what he was doing. Whatever the reason, before brain cancer, Matt dealt with our paperwork for mortgages and car insurance and wills. We talked about all our big life decisions, but ultimately Matt steered the direction of our lives. And we were both happy with this dynamic.

I’ve written more than a handful of times that the worst days are coming. But I’m not sure when I write that what visual those words conjure for anyone reading along. I suspect an image of a hospital room comes to mind first. Maybe, following that image, comes another of an adult struggling to remember how to use a spoon.

And those are the worst days, without a doubt. But there were other kinds of worst days, when Matt would wire money to the wrong account or forget crucial passwords moments after creating them anew, and he was frustrated and confused and, often, angry at me for not trusting his judgment anymore. And I was terrified and unsure, desperate to want to trust Matt’s judgment and somehow, at the same time, angry that he didn’t trust mine.

And when our friends asked how I was doing, I didn’t have the words to explain what was happening. I didn’t yet know that there was a name for what Matt and I were experiencing.

A year ago today, I didn’t know the phrase “renegotiating relationships.” I actually didn’t learn that phrase until just a few weeks ago when I read an article about the toll caregiving for a brain cancer patient can take on the caregiver. But since I’ve heard that phrase, I can’t stop thinking how accurately it describes the experience, which felt so singular as we were living it.

I thought our worst days were unique to us because of the specific dynamic between Matt and me. But apparently, renegotiating relationships is a universal experience in the world of brain cancer.

In the coming weeks and months, I’ll explore the cruel way brain cancer forced us to renegotiate relationships, an effect of the disease for which we weren’t at all prepared. So for now, I think it’s enough to introduce the topic here—on a post for a day when Matt once again encouraged me to pay attention to how he steered the direction of our lives and I once again chose to believe he’d just be around forever—and add this thought:

When I read the words “renegotiating relationships” I felt a little less alone in our experience, a little less lonely. And I can only hope passing on that phrase to someone reading along will also make her singular experience feel just a little bit less lonely.

I hope it helps.