[From January 17, 2018: As I’ve been going back through the various entries I either wrote in my journals and/or posted on social media, I’ve been looking for a handful of representative pieces from each season of our experience. There are some things that now, with the benefit of a little hindsight, I know ended up being more important than I understood at the time of writing. This entry from the very beginning of 2018 is that way. For whatever reason, Christmas 2017 was hard on Chelli, so we started 2018 in bad shape. Things would quickly go from bad to much, much worse after the “procedure(s)” mentioned below. But I’m getting ahead of myself. First, this.]
She seems to be deteriorating pretty rapidly, particularly over the last two weeks. The holidays were especially brutal this year, a bit of a new normal, I’m afraid, but I don’t think I’ve seen her this weak & depleted, this much not-herself, since this whole shitty fiasco started. On Friday, she goes back to OSU Medical for another procedure, actually a combination of several different out-patient procedures — part diagnostic and part (hopefully) reparative to give her some relief — all rolled into one lengthy process under full sedation. The main surgeon determined it would be less of a risk this way, less wear-and-tear on a body that is already far more worn-and-torn than any hundred pound frame should have to endure. “Less of a risk,” the surgeon calmly stressed, “is not the same as no risk.” Less is not none. It’s an admonition that’s been rattling around in my obsession-friendly brain since I first heard the good doctor’s words.
On the way home from work this evening, I was on the phone with Chelli, asking if there was anything I could stop and get for her. She’s limited to fluids and broths tomorrow in preparation for Friday’s festivities, although she hasn’t been able to keep much of anything down for the better part of January anyway. I was sure, though, that there had to be something I could nonchalantly grab at the grocery store to make all the difference. I texted her several times throughout the afternoon with ideas and a variety of carefully curated suggestions. Each time, she responded to my texts by politely declining. After I left the office, I reasoned, I could get her on the phone where I would be able to hear her “no, I’m good, thanks” so I could better ascertain whether she really meant it or not. Even in the audio version, though, she was resolute; there was simply nothing I could get. “Just come home,” she said.
So, of course, I didn’t. From the grocery store, I started texting her again. “Hey, what about vegetable broth instead of chicken? They have a low sodium kind. Or there’s this mango/apple juice that looks not-terrible. Either of them sound good?” She texted back only, “Babe, please stop.”
I’m a fixer by nature. But there is no fix to be found here, nothing I can buy at the grocery store, no gadget I can find on Amazon, no magic drug or clinical trial I can research in the dark recesses of the web. This is just our reality right now and it won’t be fixed by my stubborn, performative force of will. And I hate it more than I’ve ever hated anything. I’m angry at the limits of my humanity and at the absolute batshit unfairness of this disease that’s befallen her and robbed us. I’m pissed because we had plans and this wasn’t part of them. I’m tired because I can’t remember the last time I slept, much less really rested. But mostly, I’m just scared. We both are.
