End of year reflections | Monthly Resilience Report: December 2020

Oh highway Christmas tree—a bit of a mess, just like me….

This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

This is my here and now.

I started these reports thinking that they’d be a low pressure, fun way to document progress. That by the end of 2020, they’d help me warmly reflect on how far I’ve come from my spring AE relapse.

But the scary thing is that we’ve now arrived at the last day of the year, and the so-called “recovery” remains an elusive, faraway dream. I’m well aware that there are no guarantees when it comes to how well one recovers from AE; still, I had one promising, personal data point to draw from.  I weighted that one highest.

I got back to baseline roughly 10 weeks after my first dose of Rituximab last year (after 5 years of misdiagnosis); surely, I’d have a similar response being put back on Rituximab this year.  That was my thinking this spring, at least. I didn’t want to lose energy dwelling on other possible realities.

But those of you following along know that I haven’t responded the way I hoped. The first dose in May this year seemed to provide minor benefit; the September dose seemed to provide none. Even with serum B cell levels at 0, with seemingly no repopulation since my initial dosing last year. I’m ending 2020 with very unpredictable days averaging between 50-60% of my baseline level of functioning, and let me tell you: months and months of living with fluctuating uncertainty and fluctuating brain function is existential agony.

Sure, you can dress up a certain day with a bow (say, Christmas), distract yourself with hedonistic pleasures (hello candy and ice cream), and play mental gymnastics to convince yourself that you don’t really need anything in life, anyway (not even your health!).

But this isn’t a sustainable way to live. I don’t know what to be aiming at. There’s limited coherence between who I feel like one day, and who I end up being the next. One day I feel capable of starting to dismantle the barriers in my way to having a good quality of life. The next day it’s all I can do to make myself some nourishing food and hold it together externally while I mentally fight an internal storm.

As dour as that sounds, when I take a step back, I’m pretty sure I will be okay. That this too shall pass. I think I’m probably in a state of depersonalization/derealization right now, with my thoughts and physical environment somehow seeming unfamiliar and distant.  This has happened off and on this month, and I recognize that I always end up snapping out of it.

Part of me wants to attempt to make more sense out of where I’m at currently and translate that into a more informative monthly resilience report, but at the same time these posts are meant to serve as a snapshot in time. This is my here and now; I look forward to a future when the types of thoughts written here are a thing of the past, whenever that may be.

Speaking of the future: I’m playing the insurance waiting game and lining things up for a fruitful January.  Cue the obligatory “here’s to a better 2021!” line.  Thank you to everyone who has connected with me this year—you’ve made this crazy healthcare journey more meaningful.

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This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

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