The Serpent
by Scott Hardie on August 26, 2024
This is the third of four weekly blog posts about diagnoses that have completely changed my life since the pandemic started, after The Dragon and The Tiger.
2020 was hard on all of us. We all lost friends and family. We all hunkered down in our homes while the world seemed to tear itself apart outside. The depression and quiet trauma affected us all.
That's why I didn't think much of my symptoms for a while. I gradually found it harder and harder to focus on tasks in front of me, or to remember information short-term or long-term, or to make decisions and proceed. I would stare off into space for tens of minutes, not thinking of anything in particular. I kept getting lost in minor mistakes, taking all day to fix simple bugs in code because everything I wrote was itself riddled with errors and sometimes unparseable. And worst of all was the sleepiness; I kept nodding off at my desk, taking little 20-minute catnaps throughout the day, always sleepy no matter how much rest I got.
Of course my work was affected, but between the depressing state of the world and my own depressing prognosis in early 2021, I blamed it on my mood and did my best to power through it with sheer will. This did not work. The problem got so bad that it would take literally every last bit of willpower I had just to force myself to focus for five minutes to finish a rudimentary task (read an email telling me to fix a broken link, find that link in the code, change it to the correct URL, test it in a browser, submit it to QA), leaving me mentally exhausted for the rest of the day, unable to do anything else but stare at the wall until it was time to go to bed. How was I supposed to work as a web developer when fixing a link was my sole accomplishment for the day? Something was terribly wrong, but I was so adrift in the mental fog that I couldn't recognize how bad it was.
A diagnosis in the fall of 2022 finally provided an explanation: Hepatic encephalopathy, or "HE" for those of us with memory problems too severe to remember its full name. It's the result of ammonia building up in the bloodstream when the liver cannot filter it out, slowly clouding the brain and interfering with concentration.
This diagnosis was a relief because it provided context and explanation for what was happening to me, and confirmation that the cause wasn't just sadness or insufficient desire to do my job. It also allowed for me to file for disability coverage under my insurance, and to discuss a separation with my employer once it became clear that I was not going to recover the ability to perform the job. I'm now permanently disabled, waiting for the glacially slow process of Social Security to approve my claim for SSDI, getting by on the aforementioned disability insurance and on my mother's estate.
The diagnosis also helped by providing a treatment. I take Lactulose, which flushes out most of the excess ammonia and reduces the intensity of the symptoms—but in the process, causing stomach cramps and frequent sudden trips to the bathroom, which is precisely what I have too much of already. On days when I must be out of the house, I skip the medication so as not to have to keep hurrying to the bathroom in appointments with my doctors or lawyers, but more than a few of these off-medication days in a row means that the HE returns to full force.
What's it like? I often say that it's like that feeling of walking into a room and forgetting what you came for, but all day long, no matter what you're doing. At the heart of the experience is an inability to hold information in my mind; it's like trying to hold water with my fist. I once stood in front of the open freezer door in my kitchen for twenty minutes, trying to choose one of my three Lean Cuisines for lunch, but I couldn't hold all three in my head long enough to compare them and pick one; I just keep cycling between them for twenty minutes, mind blank, cold air blowing on me, no sense of time passing. In conversation, I frequently stop mid-thought because I cannot remember the second half of my sentence while saying the first half. I used to have terrific recall of names and titles and words, but they tend to be lost to me now; I sometimes cannot remember what movie I just watched an hour ago. And even when I think I'm making sense, I'm told by Kelly or friends that I'm not, that the words are tumbling out in the wrong order or incomplete; memes that joke about word salad are sad to me because they pretty accurately depict what I can be like on worse days. If you've noticed any sloppiness in my online writing recently, now you know why.
How do I get by? Well, the severity of the disease varies quite a bit based on how I'm eating and sleeping and medicating. If I'm having a "bad brain day," I give myself permission to zone out on YouTube, or just try to get some household chores done with a pre-made daily list, or I give up and sleep, and you don't hear from me on those days because I'm not coherent. But luckily, I still have plenty of "good brain days" when I've been on my medication for several consecutive days and I'm well-rested and I haven't eaten fatty food that drains my energy, and on those days I can still produce somewhat thoughtful writing and play complex board games (especially if they're familiar) and otherwise feel normal, at least for a few hours before the clarity fades. I'm grateful for those days when I get them, and of course I try to arrange as many as I can.
Also, there's the constant, constant sleepiness. I can nod off and fall asleep in 30 seconds, anywhere, any time. I have stopped driving because it's too dangerous, relying on Kelly and Uber to get me around. I have also developed a taste for coffee that probably isn't good for a pre-existing heart condition, but I'm too often useless without it. A very common side effect of HE is "sleep cycle inversion," in which you're wide awake at night and intensely sleepy during the day, and I'm resisting that as hard as I can because it feels like a Rubicon that cannot be uncrossed. Sleeping for a full night is rare now (3-5 hours is more typical), and the less sleep I get overnight, the worse the brain fog gets the next day. I've had to accept that I'm pretty much always sleepy now, sometimes overwhelmingly so. Kelly is accustomed to me falling asleep while watching TV on the couch, and while I'm pretty sure I haven't nodded off in public yet, I'm not sure that I would notice if I had.
The insidious part of HE is that I can't always tell when I'm affected. By its nature, it robs me of my attention and focus, so the worse off I am, the less likely I am to notice. I will think I'm communicating a point clearly, only to have to guess from the confused faces in front of me that I said it all wrong. It's hard to adjust for my lapses in thinking when I can't even think clearly enough to notice that my thinking is altered. The condition will get worse with time, so here's to appreciating the good days when I get them.
This series continued with The Phoenix.
Four Replies to The Serpent
Scott Hardie | August 26, 2024
Thanks, Denise. :-) For the important writing like these news-sharing blog posts, I've come back and edited them a few times over a few days to clean them up, because I want them to be clear. And when I do, I'm disappointed but not surprised to find a word missing here or an unfinished idea there. But on shorter things, I just wing it and hope for the best. I feel like now that I've shared this diagnosis, at least there's context for any future mistakes, so I won't worry that people who know me will wonder what became of my former clarity. Even if it will make no difference in their thinking, it will in mine.
Lori Lancaster | August 30, 2024
You’ve been completely easy to understand Scott. This journey you are on must be extremely scary. It’s very brave of you to share the how’s and whys and the effects. ::hugs::
Scott Hardie | August 31, 2024
Thank you, Lori. The kind words from everyone are a help and a comfort.
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Denise Sawicki | August 26, 2024
"If you've noticed any sloppiness in my online writing recently, now you know why"
No, you have been expressing yourself very well in my opinion. I am so sorry this is happening to you though.