Me: "Hey Google, are infectious brain injuries a thing?"
My phone: "Infectious diseases can cause mild, moderate, or severe brain injuries. The consequences of these injuries depend heavily on the nature of the disease and how it affects the individual."(https://www.brainandspinalcord.org/faqs/abi/can-infectious-diseases-cause-acquired-brain-injury/)
Well, shit. They actually ARE. 😳
That was the question I spoke into my smartphone after another day of feeling ridiculously stupid, incapable, and frustrated. I am currently working on a pretty significant reno project, and had to call for help on something that at one point in my life, I could have done myself pretty easily. Now, I look at things that shouldn't be too difficult, and my brain just can't connect the dots. It feels like one of those dreams when you are in serious danger and you're trying to scream but no sound comes out. Or like when you're looking at a page of instructions, but it's in a foreign language and you weren't expecting that, so you just keep scanning the page for something recognizable.
Acquired brain injury (ABI) refers to any type of brain damage that occurs after birth. It can include damage sustained by infection, disease, lack of oxygen or a blow to the head. https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/acquired-brain-injury
It was a year ago this month that I got Lyme disease, and while I felt absolutely awful for a few weeks, the cognitive symptoms were the most severe and longest lasting. Then in November, I had COVID, and since a lot of the long-term brain symptoms seem to be the same, it is impossible to know which came from what. All this time, though, I have been thinking of my decreased capacity as "cognitive symptoms," and it wasn't until after yesterday's project that I realized I felt like I was actually dealing with a concussion/traumatic brain injury. And it turns out, the symptom list for acquired brain injuries is the same whether it's from blunt force trauma or infection. This explains SO much.
It's not just my project doing/puzzle solving skills that have been affected, and it has been detrimental to literally every aspect of my life, from my ability to support myself to my personal relationships. When I first got sick, I pretty much completely lost my short-term memory, and couldn't even find my words when attempting to converse with someone. Just a regular everyday conversation was completely exhausting, which even as my body recovered enough to be able to go back to work, remained a huge problem. Everything I do requires talking to and connecting with people. Both of these things have improved some over the last several months, but I am definitely still not back to my normal in either area, and the real-life effects are profound. Thankfully, information I obtained previous to getting sick is still mostly accessible, so I am able to still do hair services and bodywork on animals to the extent that my body will allow. But explaining to clients what I'm doing, why, and how remains difficult, and I feel like it sometimes undermines the confidence clients have in me. I am also currently working on building a referral business with an online wellness company (largely because my body isn't up to the physical labor I could do before). When I first mention it to most people, the typical knee-jerk reaction is that it must be an MLM and/or I'm trying to dupe them into "one of those things." Neither is true, and the previous fiber-optic version of my brain would have been able to very articulately and concisely put their concerns to rest. But since my current one feels more like 1997 dial-up, I stumble over my words, and my faltering sometimes seems to actually reinforce those false preconceived notions. Outside of work, people get frustrated with me. People I love feel like I don't prioritize them or care about them. I struggle to remain as present in people's lives as I would like. Friends think I'm airheaded and don't pay attention. Trust me - I get it. If you think it's frustrating to deal with me like this, imagine BEING me.
All of this creates more stress, and to make things even MORE fun, stress seems to be the biggest trigger/factor in my brain's (in)ability to function. As someone with both generalized anxiety disorder (GAD) and Attention Deficit Hyperactivity Disorder (ADHD), I am no stranger to struggling hard on a daily basis against my own brain. Truly, it's directed my life far more significantly than I want to admit, but it's also something I'm very aware of and vigilant in managing/progressing with. But this...this is something so different. Now, it's like the tiniest little bit of stress hormones cause my brain to go straight up Blue Screen of Death. (For those of you who don't get that reference, it's when your computer screen goes blank and it won't do anything at all. It often means your computer is just fried.) For someone with the previously mentioned disorders and who lives in a pretty consistent onslaught of stress....well, you can guess about how that's going.
Part of me is actually a little thankful for my experience with GAD and ADHD at this point because at least I'm not a total stranger to this realm of struggle, and I have a lot of experience with advocating for myself and finding ways to help myself adjust and manage. (And then I try to use what I learn to help other people who may be experiencing similar struggles...thus this blog post!) Whether or not my particular case is actually considered an ABI at this point, I don't know, but I can say without hesitation that the symptom lists line up. I know I've heard and found a multitude of other stories like mine after both Lyme and COVID infections, but the solid information about it seems to still be lacking. (I also wonder if the fact that I had multiple concussions in my 20s may be contributing to how my brain is - or isn't - recovering...) If you are going through something similar and need someone to talk to, please reach out! If you have experienced something like this and find something that helped with recovery, PLEASE let me know.
I am SO very thankful I have people in my life who are patient with me and there to help when I need it, but I also feel terribly about being a burden and source of frustration. (And it's hard to not let that be another source of stress that contributes to the downward spiral.) If you are dealing with someone in your life who has sustained a brain injury, here are some resources that might help:
And here are just a couple articles I found about the cognitive affects of Lyme and COVID: