I’m walking down the street of a major American metropolis, bagel in hand, rushing to find a park bench so I can log in to Zoom. I look down at my feet, pause, and whip out my phone.
Perfect. This will do. *shutter click*
Leave it to a patch of dingy city sidewalk to embody my feelings of living with an inflamed brain.
Years of being unwell with autoimmune encephalitis (AE) has exposed me to the whole gamut of human emotions. It’s been a terrible, beautiful inferno. Not one that I’d want anyone else to experience for more than a week; but one that has come with a unique set of experiences, opportunities, and revelations that hold a lot of value in certain contexts. Such as the one where I move past years of medical mayhem and into permanent remission. Looking at the bigger picture, I know I’m steadily getting there.
This summer’s predominant emotion, however, is confusion. This is what I share with others on the support group Zoom call—all of us touched by encephalitis in some way, using an art therapy exercise as a tool to express our emotions.
I recap the medical mismanagement and subsequent relapse I’ve endured since my January 2021 hospitalization. I mention the new appearance of controversial GAD65 antibodies in my bloodwork. I talk about the wildly unpredictable local neurologist who swung from suddenly attempting to arrange for another hospitalization involving plasmapheresis, to passing a message through his secretary that he would be taking no further action to help me. I discuss the aftermath of being stranded in one medical system, and traveling to another that’s 3 expensive plane rides away.
It’s convoluted; I don’t quite understand how I’ve arrived here. On the other hand, my 10 second “art” effort is the perfect antithesis to my exhaustion from withstanding the events I’ve just described. I ruminate: Did that all really have to happen? Why is this so hard? How can doctors get away with this? When will this madness end?
A lovely friend chimes in with an appropriate title for the piece: Scrambled in the City.
Damn right it’s been a mad scramble. Now, imagine navigating this while ALSO being cognitively impaired.
As I’ve written countless times before, my manifestation of AE feels like dementia. I’m not at my worst point of 2019, thankfully; but I’m not much better than the lowest point I’ve felt in 2021, which was just prior to being put on Actemra (tocilizumab) last month. My memory, processing speed, executive functioning, and reasoning abilities are significantly blunted.
None of this is pleasant, but what tends to bother me most? My diminished capacity for verbalization. I’m aware this sounds strange, since I seem to be in the midst of writing a somewhat coherent blog at the moment; but trust me, writing nowadays is a painstaking task that takes ~3-7x the amount of time that it took me to write pre-illness. I know this because I used to get paid to write, and I’ve had a long-time habit of timing myself.
To compose a sentence on my worst days, I have to move through multiple layers of translation. On the highest level, my mind perceives the vague contours of a thought that’s enshrouded in fog. On the next, I reach through the fog only to realize there are no words to grasp on to. Somewhere in the middle, after using a cloth and some elbow grease, parts of the fog dissipate. Then it’s on to the chisel, where I onerously contort my arm from multiple wrong angles until it finds the right one to carve from. Finally, I find myself having drilled down to the lowest level… lo and behold, ladies and gentleman, we have ourselves—*drumroll*—ONE. SINGLE. SENTENCE.
One that might lack the crisp edges I was aiming for; but one that approximates my intended idea close enough for me to feel okay trudging onwards to the next foggy translation.
All the while, I will spontaneously forget how grammar works. Movement through the layers is nonlinear, as I start to doubt whether a comma goes here, or a comma goes there. I use a dictionary to remind myself the meaning of a word I once effortlessly knew how to use. I generally avoid using quotation marks to spare myself the trouble of looking up how to wield them accurately, a skill I had no problem with in grade school. It takes multiple rereads to ensure I’ve lumped together words using a consistent tense, let alone crafted an intelligible narrative. Confusion abounds.
All that to say, I miss the days where the dominant medium through which thoughts landed in my consciousness were words. Not these amorphous blobs that take significant brain power to transmute.
So there’s your peek behind the curtain into how my brain-injured mind produces language. There can be an equally complicated series of steps to use any cognitive faculty—to remember, to process a series of thoughts, to accomplish goal-directed activities, to reason through an argument—depending on how my brain is working that particular moment.
Pile a complicated external situation (navigating medical care for AE) on top of a confusing internal situation (existing with serious cognitive deficits), and voilà: there you have this summer’s tale of Scrambled in the City. Shoutout to some really wonderful folks who sit together with me through the confusion, and inspire me to still write regardless of fluctuating cognitive challenges 🙏
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You may be interested in reading the following next:
Relapsing… again. Autoimmune encephalitis round #3: Let’s go 🥊🥊🥊
This is what it took to lift me out of an autoimmune encephalitis relapse
The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis
Autoimmune Encephalitis Recovery, Part 1: A Look Behind the Scenes of Emotional Breakdown
Autoimmune Encephalitis Recovery, Part 2: The Day-to-Day Emotional Challenges
The 7 Ways To Piss Off Your Neurologist, As Told By An Encephalitis Survivor
Yes!! I have to re- read what I write as it tends to be repetitive. It’s the small successes that make us happy, finding our way someplace, remembering where we put something. It makes me wonder how I managed my life before AE. How was I not more exhausted, because it doesn’t take much now.
Yes, absolutely! I miss having my energy. The simplest things can be exhausting, with so much more brain activity required to get to the same endpoint that my “normal” brain would. Learning to take joy in *actually* accomplishing “small” things has been a learning curve haha
what a great blog.
I have a question though. How much did your brain fog / dementia-like cognitive decline improve with immunotherapy? It certainly wasn’t a complete improvement, but what percentage improvement would you estimate?
Hi Mike, when I first got diagnosed with AE in 2019 I received IVIG and Rituximab. That brought me back to basically 100% baseline cognitive abilities (maybe just a slight memory deficit but very negligible), after going 5 years without treatment. However, I have since relapsed and it has proven to be a long road back to recovery. I am still hopeful I can get back to 100% with consistent treatment