Reteaching oneself language after a stroke in the digital age
I’ve tried to write this particular piece maybe a thousand times. This is normal for me, but in this particular subject, it’s not. Every iteration of this essay transforms into something different with a new focus, a new internal, emotional response, and a new hopeful impact on the reader. If I’m lucky, there might be a lesson to be learned somewhere, but that’s not consistent, either.
The short of it is that in the second half of 2022, I had a stroke. The reason why isn’t as important, and it tends to get people arguing about the wrong thing and focusing a little too hard on whether it was funny and if I deserved it. I did not have the one-sided paralysis that is synonymous with the medical emergency. The tell was subtle, and it was only “caught” in time for me to have the stroke in triage because a pharmacist caught it. I mentioned to him that I thought my home blood pressure cuff was broken (it wasn’t), and then I asked him to read my medicine bottle. Glasses on or off, I couldn’t read it. He had me sent ten minutes down the road, and by the end of my own memory, I was slurring my words and unsure of everything that has ever been.
And I slept for a long, long time connected to sensors and multiple bags per each IV. When I woke up, I could read a poster above the shelves of medication that almost reached the top of the ceiling meant to remind nurses — ironically — how to spot an oncoming stroke in a patient. I don’t remember where my glasses were or how I knew where to find them. I was confused about the stuffed animal tucked under my arm. Did I bring her there with me? My daughter was six, so my husband would have been unable to bring her to drop off anything for me. The hospitals were slammed full as early as omicron for us here in RTP, but they made space for me that night, something they didn’t even do when I was actually dying of COVID.
That’s about where my memory craps out. I have fuzzy impressions of arguing with people with a raised voice — not anger, but desperation — and crying. I didn’t understand why they were so angry with me. They said I wasn’t communicating with them, but I was. I told them every thought that popped into my head lest I forget it within the next few seconds. I took their words to heart and acted on what I heard. What I didn’t know was that my words were gibberish, and I didn’t understand them. When I read back on my text conversations during this time, what I wrote made sense to me. But I learned to disclose the stroke. I found people, even if they didn’t “forgive me” or choose to keep communicating, at least stopped calling me stupid or worse. I still do this.
The only real help offered that made sense was something my cousin said. He had a serious TBI when he was hit from behind by a car while on his bicycle. The motorist took off and left him there bleeding in the road. It took him months of recovery, and it took months for it to hit that he could have died. He told me that it didn’t matter if no one understood me or I didn’t understand them. I had to keep talking anyway. If I didn’t write, read, listen, or speak, none of the neural pathways would “reconnect”, and I was on a timer for how long practicing language skills would work.
Something in the back of my brain that might have otherwise died flickered from my undergraduate degree. Dr. Ralf Thiede at UNC Charlotte taught neurolinguistics, which I took as an English major elective. One of the topics he covered were the different ways the brain took hits to its language centers (Wernike and Broca’s areas if you care). Wernike’s aphasia stood out like a candle that flickered at the beginning of a storm threatening wind and torrential rain. When I remembered well enough to Google it, the diagnosis fit my symptoms like a glove.
Before I continue, I don’t give a single fuck what your opinion on self diagnosis is. This was for the purpose of healing, not for adding a diagnosis to my bio on the platform formerly known as Twitter, although I eventually did add it when the diagnosis became official. But at the time, the most important thing was getting my life back together. I emailed Dr. Thiede a handful of times with my story of getting sick, the stroke, the language and memory problems. He agreed with my belief that Wernike’s aphasia was a good candidate* for the injury to my brain, and I set out to improve from there.
It was humiliating. Fights with people I loved, the insistence that I was refusing to communicate out of spite or disinterest in others, the insults using words I didn’t even use against people I loathed, the terror I would lose my job or care of my daughter — those haunted my days and nights.
Memory was no better. In the time it took to open a new tab — something I could probably only do through pure muscle memory — I might forget the thought I had. I forgot things in the process of writing them. If I was interrupted while speaking, the thought was gone for good. And while I took shit and continue to do so for this, I relied heavily on speech-assisted home automation devices like the Amazon Echo and Apple products to keep track of my thoughts. I started asking Siri to take down notes for me, and I asked Alexa to remind me or track my obligations. I shared a calendar with my husband, because I could no longer manage my own.
The presents I got that year for people sucked. They were also all late with no exception. I’m sorry everyone who still loves me somehow.
But I did. Most of my writing went to Reddit where it would be wasted at worst anyway. When I remembered it existed, I dragged “Reddit Delete Suite” to my Bookmarks bar and went through periodic comment purges. However, I also read older conversations with people I communicated with regularly. Once I started to recognize that I had written word salad, it felt within my reach to “get better” enough to function as an independent adult. Maybe I wouldn’t get to be a writer anymore, but I could still be trusted to manage my household.
When I felt more confident in my speaking well enough to know what I was talking about hours later, I started documenting absolutely everything.
Some of this was because that’s my job during the day — documenting processes, specifically command line open source processes. But at home, it was to document everything about running the household: when things were due and how much we should expect to pay (sometimes specific to season), our regular groceries and how long those items could last, logins and subscriptions, the things one might expect our daughter to learn that school year, how to troubleshoot the devices I used and my husband didn’t. My phone passcode, which opened access to Authenticator, which in turn blew open access to all my remaining accounts.
I also wrote lists. I wrote what I needed to do within the week on a sheet on a legal pad.
I marked them complete with a highlighter so they could be read still when completed, because I might have needed a record of what I did and why at some point, too. I fell back into pre-pandemic habits of making spreadsheets of multi-step processes and assigning them statuses. The best example I have of this is Christmas. I ultimately make a list that categorizes the recipient, the present (linked if it’s been identified specifically), its status (unknown, saved, shipped, arrived, wrapped, hidden or under tree). There are separate spaces for “Santa” gifted items, stockings, and candy left out from Santa.
I printed documentation online for things that existed, and I wrote my notes there, too.
But my entire life was like that at least at one point, and that’s relevant. I’ve long loved spreadsheets as update tracking tools, better than other applications specifically meant to do those things. They are rudimentary and manually updated. There are no preloaded statuses; I just type them over and over. And that may be what helped me here. The muscle memory of typing and retying in a boring, repetitive way that made sense for my own brain.
And because it made sense for my own brain, of course it was a critical component for my brain remaking neural connections. Those were likely some of the stronger connections, some of the easiest to retrain since I had always trained myself to be this way. I am the kind of Xennial who was raised on early computing after the disappearance of the “real” flopping disks, only truly seeing them at underfunded public schools or libraries. Office software didn’t do shit for you automatically, not like now anyway. It could calculate things for you, but it wasn’t meant as a database. In my admittedly fractured memory, I distinctly remember being taught to use Microsoft Database, which ultimately became something else and more advanced.
It amuses me that it flies in the face of every adult that ever told me that relying on technology would ruin my ability to be self-sufficient, destroy my ability to write well, to remember things on my own. It was distinctly my use of technology that made it possible to heal from one of the most medically traumatic experiences of my life, one that induced brain damage and reduced me to a puddle of frustrated, sobbing nonsense. For months. And even if we ignore the part where I fell back into habits that accelerated the part where I was having to relearn memory and language, having the ability to read people speak to one another and join in anywhere in the world at any time surely had an impact. Yes, people were assholes, and my early writing was trash. But it was practice with people I’d never see or hear from again. And I eventually reminded myself I’d likely never remember them anyway.
And I don’t. Just the vague feeling of being stupid, being FUBAR, being beneath others. As far as specific humans, though? Not at all.
