[From September 1, 2020: Yes, everyone was fine and yes, cars can be fixed. But this dance between safety and independence, especially with a raging pandemic all around us, has nearly been the death of me more than a few times. This is one of those times.]
One of the great difficulties of navigating these last few years of Chelli’s illness — aside from, you know, all of it — has been watching her be systematically stripped of her independence. We both have serious, deeply ingrained and unabashedly stubborn independent streaks. In some ways, our unique senses of personal independence were part of the initial attraction, not to mention what has made our three decade relationship possible. Obviously, personal independence can be incredibly complicated by the shift into a caregiver/caregivee relationship, with all of the power imbalances it might imply. That’s certainly been our experience.
Initially, it was the betrayal of her own body, the way it would often force her to rely on others or, god forbid, ask for help with tasks that were once, maybe just days or weeks earlier, completed without a second thought. When the COVID lockdowns first were put in place back in March, the truth is that her life didn’t change that dramatically, mostly because she’d already been experiencing the slow slide into isolation that comes with being chronically ill and never knowing from day to day what your body has planned for you.
Chelli’s driving has long been a source of contention in our relationship, even pre-illness. Luckily, I’ve been able to take her to many/most of her (at this point, hundreds of) medical appointments since our world turned upsidedown, but she’s still relished those rare opportunities to get out on her own, sans babysitters and chauffeurs, and do even the most trivial of things. On more than a few days, her big outing might be driving up the lane to our mailbox or, on a day when all of the stars seem to align just right, she’ll travel a couple miles down the road to the CVS or Starbucks drive-through. It’s a big deal when it happens, dispensing joy to her and a decent helping of anxiety to me. The goal is simply for us both to survive the experience.
When the lease on her car was almost up a couple months ago, I quietly wondered if it was even worth replacing it, no more consistently than she drives these days, but I also knew the car was a symbol for her. It was a hunk of metal that would prove she was still determined to participate in some version of a life, even if it didn’t look like The Plan. And so, about a month ago, we replaced her little electric car with a new model of the same, another symbol for us of something resembling “hope” for the future.
She’s only driven it a handful of times since we got it. Today she decided that she felt good enough to run an errand — a quick CVS run, so I wouldn’t have to later, a way for her to “contribute” — but somehow in the span of that 7-mile round trip, managed to rear-end another car at a stoplight. (Everyone but the car and my blood pressure are no worse for wear.)
She decided not to call me right away when it happened, since she knew I was at the office and in meetings all afternoon. She could at least handle the fallout of the accident, she reasoned, without triggering a rather predictable, frenzied spiral of my own, where I immediately drop everything and speed home to “manage” the day’s catastrophe. To her credit, her plan was working until I got an email from State Farm while sitting in my meeting, alerting me to the newly assigned claim number for my “recent accident.”
My drive home this evening, although not exactly frenzied (mostly because I knew she & the mutts weren’t injured in the day’s misadventure), was still full of competing internal monologues: “oh my god, she could have killed herself” to “or someone else!” and then quickly to something more akin to “and now, I might kill her with my bare hands.”
It takes me back to a question my friend Beth addressed in a talk she gave at a caregiver’s conference in Chicago last year: So, what sort of caregiver gets mad at the sick person in their care?
We all do. Every single one of us.
Sometimes I ramble. 