This, I admit, is an exceptionally heavy topic to make the first thing I write about here on CoHost, but I want CoHost to be the place where I post my most substantial writing. In this case, I would like to share a small memoir about the stroke I had one year ago today.
On November 8th, 2022, around 8PM, my mother saved my life. Around noontime that day, I had gone to the local middle school to cast my ballot for the midterm elections. I didn’t have to go to work at my new job that day, so I was readying myself for a day of no responsibilities. I don’t remember much else from after that, maybe I’d grabbed something to eat on my way home or sat at my computer for a while after eating something. I know that I laid down for a nap at some point, maybe by 2 or 3PM.
I woke up, and the first thought I’d had was, “Okay, let’s get up and get ready for that Switch stream.” I had been thinking about reconnecting my capture card to my PC so I could stream something on Twitch, maybe Mario Kart 8 or Super Smash Bros. Ultimate. I got out of bed and onto my feet, and though I was feeling pretty groggy from the nap, I was feeling a dizziness I had never felt before. Something was wrong. This wasn’t the usual lightheadedness that came from the grogginess of waking up from a nap. I had heard of the descriptive prose of “the room beginning to spin” several times in my life, but this was the first time I stood still on two feet and realized my perspective was completely skewing clockwise without any movement. I tried to shake it off, blink it off, but the room kept moving, and I was starting to get worried.
In retrospect, I should have called 9-1-1, but the first thing I did was call my mother. She’s worked in hospital labs her whole life, around doctors and nurses, she’s no dummy when it comes to at least basic medical observations, so I figured I’d call her to get her medical advice. Luckily, she was awake and answered the phone. All I remember was speaking to her… but only one word at a time. I hadn’t processed any thought or speech after thinking, “Okay, let’s get up and get ready for that Switch stream,” so I took myself by surprise when I answered her with, “Hey, mom… I… uh… mom? I… I... mom? Wait… what? Mom?”
“Amy, get dressed and get outside, right now, do you understand me? I’m calling the ambulance, and I’ll be there soon. Just get outside.”
“O… okay…”
I get dressed and realize I’m struggling to get my clothes on - my limbs had become sluggish and weak - but I manage to get everything on and head outside. I even thought to lock my front door on the way out before heading down the stairs and standing behind my car in the parking lot. My mom must have called an ambulance on her way over, or called first and drove like a bat out of Hell the entire way, because she beat the ambulance to my apartment by three minutes. She got out and checked up on me and had me go into her car, probably scared half to death about what was happening to me.
I didn’t feel anything. I wasn’t in pain, I wasn’t scared, I was just confused. I didn’t know what was happening to me or why, I was too confused for anything to register. If I had died right there in the parking lot, I probably would have died not knowing what was happening to me and being too confused to worry about it.
The ambulance came in and there was some initial confusion about where I was. The paramedics thought maybe I was still inside and were talking about having to chop the door down to get to me before my mother piped in and mentioned I was in the car. I got out and was escorted to the back of the ambulance. I can’t remember if I was able to take off my shirt on my own or required help, but somehow my shirt came off and they wired me up. The paramedic kept asking me questions the entire time: “What’s your name?”, “Where are you right now?”, “What’s your name?”, “What city do you live in?”, “Do you know where we’re going?”
All I could do was look down, knowing I should know these answers but I was drawing a complete blank. I didn’t know what my name was, I didn’t know where I was or where I was heading, and worst of all, at this point, I had completely lost the ability to speak. It was all I could do after thinking about each question, to look up and give him whatever look I thought resonated a combination of worry and confusion with the slightest shrug I could muster. He eventually gave up by the time we got to the hospital, and I was, within minutes, admitted to the ER. They changed me out into a hospital gown, hooked me up to an IV and reconnected me to the machines in the room. Mom was in the room with me minutes later. Shortly afterward, I looked over to her and said my first word.
“Hey…”
Whatever happened, it seemed like it was beginning to pass, I was able to verbalize entire sentences again, which I think was attributed to whatever fluids I was being given through IV. I was able to say what my name was, what time it was, where I was again. The nurses and doctor came in and I was recounting what had happened at home. They spoke to my mom a couple times. I was told that I would be spending a few days in the hospital for testing, and they would find me a room, but until then, I would first be moved to the ICU to be constantly monitored. I watched TV, spoke with mom, saw my clothes bagged up, and frequently commented in annoyance on how a young girl in the ER room next to mine kept screaming how she couldn’t feel her face and that she was going to die.
At some point, mom assured me I was in good hands and that she was going to head home to sleep for the night, but she’d come back in the morning to see me again. I was transferred to the ICU a few hours later, where nurses would come by and check my vitals and BP and doctors told me they were gonna be working on keeping my BP down, because it was dangerously high (as it had been for years). Also it was the first time I’d heard my official diagnosis: I had suffered an ischemic stroke. They were wanting to do a quick operation that included going into the vein somehow to suck the blood clot out, but I have no idea what it was called, how it would work, what it would entail, and the whole thing was a non-issue anyways because I think they surmised that my quickening recovery might be because the clot had already slipped through. I spent the rest of the night in the ICU with the curtain closed after the doctors and nurses were finished up with inspecting me.
I didn’t sleep much that night, obviously, I spent more time looking out at the streetlight-lit walls of the next building over, or closing my eyes and trying to rest after finding a hospital-run channel on the TV that specialized in relaxing music. I still had my phone on me, and the phone had enough of a charge that I was able to tell my family and friends on Facebook and Discord about where I was and what happened the night before. Looking back at what I’d written, you could tell it was from someone who had a stroke: I was leaving out words entirely when I was trying to text stuff. My Facebook post that night reads something to the effect of, “Sorry to drop this you all. Had a stroke. More later.” It’s “drop this ON you all”. Or on Discord, where I had written, “I’m sorry alarm everyone”. That was on the phone. On the notebook paper, it was even worse. I would write out the alphabet several times in longhand, and while my handwriting has always been absolute buttcheeks to read, what I was writing was unnervingly sloppy. And while I was writing things through text with relative ease, I would notice that even when writing longhand, I would spell things incorrectly, not because I didn’t know how they were spelled, but because that’s the order my hand was spelling out the words unconsciously.
The ICU was a completely different mess to deal with. Starting that first night in the ICU, I was going to be hassled at least twice throughout the night for my vitals and blood work, and then hassled at least twice throughout the day for the same thing. Of course, I get it, I suffered a traumatic brain injury at a young age and the doctors want to make sure things don’t go south, because things can and have gone south for stroke patients incredibly quickly. Several years ago, my downstairs neighbor from back when I was living in my one-bedroom apartment was a Vietnam Veteran in his 70s. A few weeks before I moved out of there, he’d had a stroke and I didn’t see him for the rest of the time I’d lived there. But on the day of moving out, his son was going through and cleaning the place out. When I asked him what happened, he said his father had had a stroke, and then a week later, had another one. A day later, he had another one. His son just knew he wasn’t going to make it, and was basically on the verge of stroking out. Sure enough, I checked the obituaries a month later, and there was his name, having died at the same hospital a week or two before.
So I was not only dealing with the constant checkups, but the ICU is also the home of people who are in pretty bad condition and in need of immediate and constant attention. One guy a few rooms down had this horrific cough that kept me up almost the entire time.
Thankfully, I wasn’t intended to be in the ICU for very long after the morning on the second day (Wednesday the 9th), which sounded like progress to me - sounded like I was going to be in my own room, just waiting around to have tests done, deal with the doctors and nurses checking up on me, and watching the TV to pass the time. I was in there long enough for mom to pop by again before I was sent to my own room, and I distinctly remember a moment when she was about to leave. I don’t remember thanking her up to that point, but in that moment I was hung up more by something that was eating away at me.
She was getting ready to leave when I held her hand, held it up to my face, kissed it, and sobbingly said I was sorry. Sorry about not taking care of myself and for scaring her the day before. My senses were coming back enough and things were calming down enough to realize that I’d likely scared the hell out of her that night. I could see it in my head, taking a call from her daughter out of the blue, probably calling just to say hi or shoot the breeze, but then the speech suddenly starts off very twisted, confused and unfocused. She didn’t deserve that, and maybe the first thing I should have done was call 911, but lately I’ve come to rationalize that decision for calling mom first because at least she knew where I lived.
Last I heard, 9-1-1 dispatch technology didn’t show the address of a cell number because there’s no landline attached to it, so if the protocol for stopping a stroke as quickly as possible is an acronym called FAST, and every second counts, then I’m glad I called mom since she knew where I lived and could direct the ambulance there. But as far as putting a parent through that kind of fear, I still haven’t forgiven myself for it, because for all intents and purposes it was my fault that I was in the hospital for never taking care of myself.
By sometime in the early afternoon on that second day, a room was prepped and I was meant to be in that room by the evening. I wasn’t allowed to do a whole lot in the room. They didn’t want me on my feet on my own whatsoever, a nurse had to be with me in that event. I couldn’t use the shower, I had to wipe myself down with soap wipes and then dry off with a towel, no rinsing necessary. So all in all it was a hotel room with a thin bed, several limitations, and a food offering that was mid, at best. The food offerings for me had been sodium-limited, obviously, in order to keep my BP down, but that also meant limiting some of the very tastier-sounding options on the menu, like no sausage links and patties for breakfast, or no soup nor a loaded baked potato for dinner. I was mostly allowed to have hash browns and oatmeal, and for lunch and dinner, the only thing I could have that looked good was this rubbery plank of salmon with vegetables, where the salmon had some kind of fruit sauce covering it. Normally I really enjoy my salmon, but this stuff just wasn’t very good. It’s not like hospitals hire five-star chefs, but all the food was clearly pre-cooked, pre-packaged, and microwaved on the spot.
Other things about the room irked me, too. Of course the room had to have its own obnoxious neighbor down the hall. The ER had a girl crying that she was going to die because she couldn’t feel her face, the ICU had a man coughing his lungs out all hours of the night, and in this room, there was a woman down the hall who would not, stop, screaming. Afternoon, night, morning, and daylight, there would be a cycle where she would start whimpering, the whimpering would become a much more audible moaning, and that moaning would eventually become screaming, screaming until the nurses came by and told her that she was bothering the other residents and that if she didn’t stop, she would be removed. They must have eventually removed her, because after that second day leading into the third day, we didn’t hear from her anymore. I also remember a physical therapist coming by with a couple of tennis balls and showing me a few exercises to raise my dexterity, leg strength, and hand-eye coordination. My mom almost proudly told her I was constantly playing video games and at one point in time learned to juggle, and the therapist almost seemed excited at the possibility that because of all the muscle memory, I wouldn’t have any problem regaining full usage of my right hand, but I felt it was a little odd that she never came back to check up on me.
But things like physical therapy were only minor concerns for me by the time I was put into my room and things were relatively calmer - the full after effects of the stroke on me physically and mentally would prove to start surfacing. For starters, I was numb from my right thigh down to the ankle, and from the back of my right elbow down to the ring and pinky fingers. I couldn’t grab or grip things very well. I actually had the odd sensation that something was missing inside my head for a few weeks. I was easily getting lightheaded and dizzy whenever I was sitting upright or standing up.
I believe it was the evening on that second day that my mom offered to go to my apartment and bring over anything I thought I’d need during my stay. I didn’t require much, but I know the two big things I wanted were the charger for my phone, and my Nintendo Switch. And apparently, my hairbrush, which my mom playfully grumbled about having to go up the stairs to my apartment a second time to retrieve, because she had already gone down the stairs with my Switch and charger.
That second night, in my own hospital room, with my Switch and phone on the charger, I was able to watch Twitch streams and keep myself occupied in a way that watching reruns of The Office on Comedy Central in the middle of the night wasn’t doing for me. I toured all the night-time streamers that I usually watch on Twitch and clued them all in on what happened to me. They were all shocked to hear what had happened and offered their heartfelt concerns and hopes that I would improve, but I was far more happy just to see that they were online and just doing their usual thing to entertain their viewers. It was the first time I felt normal in those circumstances, just being able to talk to people again. It was good to hear familiar voices just having a good time and interacting with their communities, and people like TheAndyGamingNetwork, MisterScoot (who I still vividly recall playing Sonic Frontiers that week), PaleBlueCamel, MiddleAgedStream, and Finamenon have no idea how appreciative I am that they’re up all hours of the night, long after visiting hours were over at the hospital, when all I had was them and their communities to keep my mind occupied during those nights, because my mind often needed occupying in those times.
There wasn’t a lot there to keep occupied otherwise. I had visitors; my mom would come at one time of day, and my dad would come by later in the evening before the end of visiting hours. Other than that, the only interactions were from the nurses coming in all hours of the night to stick me with a needle for the umpteenth time to run blood tests. The only things I ever did was continue to practice my writing, get up and practice walking around for the fifteen or twenty minutes it took to get incredibly dizzy being on my feet, watch awful network television, give up doing that and either watching Twitch or YouTube, or play my Switch and come to the horrifying realization that I no longer had the muscle memory or perception of depth/distance to understand which buttons I was pressing during a game. I tried to play Tony Hawk’s Pro Skater 1+2 HD, but had trouble doing the simplest button presses to ollie or grind, much less pull off a 100,000 score combo. I started to be very afraid and depressed that I wouldn’t be able to enjoy the things that I used to.
That third day at the hospital (Thursday the 10th) was the worst. I had already had an ultrasound once before earlier in my stay to spot any possible issues with my heart, but today appeared to be the day where the lion’s share of the testing was going to be done. The first thing I was scheduled for was a head MRI around 9 or 10 in the morning, which I've never had before and was a little worried about whether I still had any metal embedded in my fingers from when I worked in a factory. The one thing I oddly wasn’t terribly concerned about was the claustrophobia of it all. I was always told that claustrophobes have major issues with being in an MRI, especially to have your head scanned. I’m not claustrophobic, on the contrary, I happen to like very cozy, cramped-in areas. But I still wasn’t prepared for what the procedure involved: having my head put in a cage, within a box, within the very small tube that was the interior of the machine. It was all more unnerving than frightening, and I didn’t even mind when the machine started making its cacophony of loud hums. My mom told me she once had an MRI and nearly fell asleep because she was so relaxed, and I even listen to peaceful drone music to meditate, but this humming was intense. It was so loud, I was having a hard time trying to flirt with the idea of having a catnap in the machine. The entire process took twenty minutes, and I was fine until the last five when my idiot-fueled imagination decided to engage this one intrusive thought: “What if everyone out there just died right now and I’m not getting out of this machine?” Great job, Amy, dare to frighten yourself at the tail end of an MRI.
The second test, one that happened at noon and the one that angered me for several reasons, was an operation they call a TEE. A transesophageal echocardiography. In layman’s terms, they were going to shove a camera down my throat to take pictures of my heart from the inside, and oh how fun that operation ended up being. First thing, the doctor hands me a cup full of a honey-thick substance, and tells me, as I explicitly remember as such, to gargle the substance before swallowing it. Now, need I remind you, I’ve been in the hospital for two nights, in all the excitement of the events and the discomfort of the bed, I hadn’t ever gotten a whole lot of rest, maybe 90 minutes each night, tops. So I’m exhausted at this point. That doesn’t excuse when I take the cupful and “gargle” it as directed, that this thick substance didn’t gargle at all. It flopped around in my throat and immediately made me start choking and gagging. If I had contents in my stomach, I would have thrown them up gloriously because this glop just kept hitting my gag reflex. The doctors and nurses finally just yelled at me to swallow the stuff, which was difficult because there was a lot of it and it tasted horrible. After that, the doctor made me open my mouth so he could spray something into my throat, and to swallow it when he was done. He did it twice and my mouth and throat had gone completely numb. At this point, I don’t know if either of what I took was a sedative, but what I do know is between the exhaustion and being force-fed gross glop, the lights were going out - fast. Last thing I heard was the doctor mentioning something about fentanyl, which woke me up just barely enough to mutter so low and incoherently, that nobody heard me:
“Noooo… don’t… give me… fentanyl… …that… …kills… … …people…”
Blackness.
I woke up out of my stupor around 2:30 or 3PM with the feeling of a swelling, sore lump in my throat, well after the window for lunch had closed, so now not only was I exhausted, I was going to be hungry, too. That was upsetting, but not nearly as upsetting as finding out I was due for one last operation: the chest MRI. I’m tired, I’m hungry, I’m furious, and I’m back into that tube, feet-first this time. I get to the room and get all fitted and prepared on the bench, when the doctor tells me to simply follow the directions when I’m told them and keep my hands at my sides. Those instructions would be the only things I heard for what felt like an hour and a half. I would be slid into the machine, back out, back in, back out; I would be held in place for what seemed like forever, and then a computerized voice would speak:
“Breath in… hold… … …breathe out… hold…”
Over and over again, I would have to repeat these same instructions for an eternity, and I wasn’t sure what they were looking for, but I’m pretty sure the doctors at that hospital now have every quectometer of my chest uploaded in 4K. I think they knew I was mad, too, because they saw me balling my fists and heard me grumbling loudly. “Just relax, ma’am, it’s not much longer now.” It still felt much longer, at least 30 more minutes.
By that evening, they were finally done testing, I could finally eat a meal and lay down and rest. I really didn’t want visitors after the day I’d had, but I can’t remember if anyone showed up besides the rotation of nurses to do blood work, blood pressure checks, and the occasional pill handout. But I do remember that third night was the night I had a small meltdown.
I’m a pretty funny person, I like to think, and sometimes that humor can get a little dark and sticky, enough to make people uncomfortable, but of course, it’s one way I can alleviate the situation for myself. I cracked all kinds of dark stroke jokes to my mom and the nurses, most notably when I asked one of the nurses if they could guess my favorite Billy Squire song. I did that during the daytime, because at night, the vibe was much different. I know one of the many reasons I couldn’t sleep at night, why I always preferred trying to watch relaxing hospital music channels on the TV, being on Twitch on my phone, or trying to play on my Switch.
I had begun having the stroke in my sleep during the afternoon that day on the 8th. I was lucky enough to have woken up around the time it had begun, when I’d still had enough cognition to walk and talk at least a little bit after waking. But even here, in the middle of the hospital, where a nurse is only an emergency ring call away, I couldn’t calm down enough to rest. What if I started to have another stroke in my sleep and I didn’t wake up this time? I was petrified of the thought of falling asleep and never waking up. I had narrowly avoided it the first time and, for all I knew, the Grim Reaper was planning to try again. In that darkness of night, there was a lot of crying and poking at all the wires hooked up to me that kept falling out when I moved around in bed, looking down at my arms with all manner of needle jabs in them. I’d be lost in the morbid ideology of a world without me in it, I’d look down and see that freckle just a inch or two below the crook of my left elbow I’ve seen my entire life, run my finger down my face and feel the pockmark just next to my nose I’ve felt my entire life, or pull my hair close in to my face and smell it, thinking of all those little things I’d miss not just about the world, but about myself. I’d keep crying, feeling like I failed myself, my body, my brain, my heart, everyone I knew, and knowing I’d never feel exactly the same as I used to. That night, after all the tests, all alone, was the lowest and loneliest I’d felt in a long time. It never helped that when it came to trying to be active, those were also failures. I tried to keep playing my Switch, but my hands could never find the right buttons to press anymore. Walking was brief and always a struggle, I wasn’t trusted to do things on my own, and I could never eat my comfort foods anymore. My body was fighting me and I was struggling to get used to the idea that almost everything in my life was going to end up doing a whole 180 and being informed and affected by something that seemed to only last less than an hour on that night.
The fourth and fifth days were kind of a blur, and I don’t remember much of them because I don’t really recall anything substantial happening. My mom revealed to me on the fourth day that one result of the TEE was that they found a hole in my heart. Nothing big enough to be a major concern, in a spot that’s relatively benign to have one, but something to keep an eye on. That was the first I was hearing of it, even though the nurses claimed that the doctor had told me the results an hour after the procedure, except she supposed that, even with eyes open, I was so knocked out that I wasn’t processing any of what the doctor was saying. That’s true, because I have no recollection of a doctor coming by to talk with me after I finally woke up after the operation.
The overall theme of those last two days were of quick recovery and a longing to get out of the hospital already. The numbing in my hands and feet were receding but not entirely gone, I was writing better, walking better, not getting as dizzy so quickly anymore, but the doctors were still keeping me in for observation. They’re biggest concern was the fact that the clot had disappeared from my brain and they were really trying to find it and get at it, except that I was always steadily improving and even my mom agreed with me that any more tests at this point would just be redundant. I finally took a wet wipe shower because I was so tired of feeling gross, but even though the nurses said they needed to keep an eye on me when I decided to do it, I just washed up without telling anyone.
It was the same with walking out in the corridors of the floor. They wanted someone with me, but I always walked out without assistance. The nurses never admonished me for it because they said it looked like I was recovering really well, so I would walk until I started feeling dizzy, and then get back to my room to lay back down. There was always more talk of other tests, but I just don’t ever remember them happening. The last two days amounted to being cooped up in my room, passing the tennis ball to myself, playing Switch, watching Twitch or YouTube (with a pretty vivid memory of spending part of the fourth night watching that Joaquim Phoenix Joker movie on HBO), watching more TV, eating meals, and at night, calling the nurse for snacks to eat when they weren’t bothering me first for more blood tests and vitals, and go back out walking the corridors whenever I wasn’t back to crying in bed with worry. I remember very well on that fifth day (Saturday the 12th) that after some deliberation, the doctors opted to not let me go home, when me and my mom were almost expectant they would, to the point that my aunt and uncle were on standby to come pick me up if the discharge papers were ready. But 2PM turned to 3, turned to 4, turned to 5, and by then I had given up hope of getting home that day and cussing a storm in front of my mom about how I just wanted to get out and go home. I’m not very good being away from home for lengthy periods of time and to be stuck in the hospital for yet another night just felt like torture. It turned out to be my last night there, and I spent part of that last night, as I’d started spending the previous couple nights standing over and staring out my window. The forecast called for snow and sure enough, there was a little more than just a light dusting coming down that final night. I looked across at the building that must have been used as the children’s wing, because the window frames were all brightly colored, and so were the walls inside that I could see. I would wonder who the shadows and silhouettes in the building belonged to and what they were doing so early in the morning; I often like to just observe humanity from a distance and think about what stories they’re telling, a behavior my Twitch audience has known all too well recently. It reminded me of my previous hospital stay in the fourth grade, when I had strep throat and was in a room for a day, able to eat ice cream whenever my throat was flaring up. This experience wasn’t as positive, and I wondered how much more negative a future hospital stay would be. It had been 26 years between that strep throat and now, and if I have my way, I’d like to avoid the next hospital stay for another 26 years and beyond. But mostly, I was relieved knowing that I would get to spend more time with moments like this, getting to observe life another day.
Luckily, that Sunday (the 13th) I was let out very early and my father was able to pick me up around 8 or 9. I received my discharge papers, including a list of all the follow-ups at departments they wanted me to see: neurology, hematology, cardiology, a sleep specialist; I was prescribed a series of medications I’ll have to take the rest of my life: amlodipine, carvedilol, atorvastatin. They even shipped a mobile heart monitor for me to wear for a month so they could keep an eye on my vitals, so I wasn’t done having wires attached to me anytime soon. It was more sobering verification that things were different now. I walked out with dad to his car, thankful I was able to breathe fresh air and feeling uneasy about something in my head just still didn’t feel like it was functioning correctly - it was gone and forever compromised. He took me to Wal-Mart and helped buy my prescriptions as well as, I think, the blood pressure machine I still use today. He took me home and, being the homebody I am, decided to forgo the plan me and mom made to live with her for a week, just until I felt comfortable enough to be home on my own. I was home after five days and I just wanted to stay home, something that was cemented when my cats were happy to see me again. I got on the computer and told everybody that I was home, took my first of what will be years of pills, and maybe meandered a bit before finally falling asleep in bed for what seemed like ten hours. When Flavor and Ninja laid down next to me, on each side, purring away, I knew I wasn’t going to be going anywhere.
The next conundrum, however, was going to be finding a new job. I had gotten fired from the job that took nearly three months to find after getting fired from a job I spent eight years at, so I was pretty spooked about being on a job hunt for another quarter of a year. And of course, this new employer chose to be completely ghoulish about firing me for “pointing out” by no-calling, no-showing for work even though, you know, I HAD A FUCKING STROKE. So fuck that employer for treating me like that, by the way.
So within days I was already on the job hunt, filling out 15-20 applications a day, but unlike the previous job hunt that took three months, it was that very next day that I got a call from one of the places I applied for - a grocery store. The day after that, I went in for an interview, and the day after that, I was hired. I never told the store manager that I’d had a stroke, and despite feeling lightheaded and dizzy that day from all the walking around I was doing, I never gave off the impression that I was under any kind of handicap to do the job. I’ve been at this job for almost a year now, and for those first six months, there were some scary nights. Whenever I looked up to move something on the top shelf, my vision would quickly get spotty and I would start losing my balance. I could never wrap skids up because going around in circles left me terribly dizzy. Sometimes my chest would start to hurt or the numbness would return to my fingers, and I’d have to hold back my speed to keep from hurting myself further.
But instances like that were going to be the norm while I would spend the next year recovering, and sometimes I would end up scaring myself right back into the hospital. On three separate occasions, I would drive myself into the ER because something would feel off and I would be so frightened that the next stroke was right around the corner. The first time was barely a month after the stroke because I could feel the pulse in my neck and I was scared it was a clot traveling up to my brain - it ended up being a swollen lymph node from being a little sick. The second time was a few months later because I was late to taking my pills, so my BP had spiked way high and I was feeling dizzy, so I was put in the ICU for a couple hours to take my pills and drink water until the BP went back down, and was put through a quick MRI to see if there was any brain damage - thankfully there wasn’t.. Third time, they did my blood work but said everything was fine. Maybe I was being a worrywort, but the last thing I wanted to do was take a chance on something I wasn’t 100% comfortable with.
My first follow-up came up quickly, I was supposed to find a family doctor who would monitor me and refill my prescriptions as needed. My new family doctor was the doctor I chose to go to, and he’s a young and kind person, very easy to talk to and has great rapport with me as his patient. Mom liked him so much that her husband is going to start seeing him, too. But he also made sure that I kept in check with the other departments. His appointment was a cakewalk compared to the other two doctors I’d seen. My neurologist was this creepy old woman who seemed set on making me feel like I was living on borrowed time, showing me my head MRIs that were already unsettling enough to look at because your MRI shows your brain in different slices of layers. It was when she pointed to a white spot that shows up in my brain for a few of those slices and said, “This is dead brain tissue. In some cases, the brain can repair and light those places back up, but for now, this is the state of your brain, and it’s damaged.” That confirmed that feeling I had in my head since leaving the hospital: I really did have an emptiness up there now, something that may never come back, and I may never really feel right again. She would also scare me by telling me that once you’ve had one stroke, it becomes that much easier to have every subsequent stroke. I knew after that one meeting I didn’t like her, even after my second follow-up with her, she was more bright and cheery hearing that I was losing weight, eating right, and commenting that my cholesterol levels were way down from what they were the night of the stroke.
The next doctor to visit was a sleep specialist to see if my health issues could be in part because of my sleeping issues. I’ve had problems sleeping for a long time, and I opted not to do the in-house sleep study because it would have conflicted with my work schedule and I’m very terrible about sleeping in a bed that’s not mine anyways. So they gave me an at-home test to use for a night, and apparently my results were pretty obvious - I had sleep apnea. So now I had to go to a medical supply store and spend nearly an entire paycheck on a CPAP device, and learning how to use that and get used to it was an endeavor in and of itself. I chose the version with just the “nose pillow” because I didn’t want an entire freaking scuba mask on my face, but I’ve had to learn how to keep my mouth shut while I’m sleeping now because if you’ve never used one of these things, it’s basically like having a tube feeding you resisting air to keep your airways open by force, and if your mouth pops open during sleep, you wake up with the worst case of dry mouth you’ve ever had. You get to have the experience of being in the hospital with you every night cause you get to sleep surrounded by tubes now. It’s a whole lot of fun.
My hematologist was this gruff European guy who eventually informed me through his thick accent that it looks like I have what’s called a Factor V Leiden, or, a mutation in my blood that causes it to clot “abnormally”, but usually doesn’t cause much trouble so long as you’re doing everything right. Now top of all my other pills, I have to take folic acid supplements too, so I’ve got that going for me too, which makes me wonder, between that and the CPAP, just how much more can they find wrong inside me?
I joined a Discord server for stroke survivors and found that I wasn’t alone in some of the troubles I was having after being home for a while. It turns out, the way I panic and run to the nearest reflective surface to smile and study my face for anything that looks like drooping on one side is completely normal. The anxiety of the next stroke being right around the corner is very real, but the vigilance of making sure you’re always okay is important.
And that’s how things have been going from day to day since then. Coming home from the hospital, I was back to cracking jokes to feel better - on Thanksgiving a few weeks later, my mom was cautioning me about going down the stairs while carrying something and I told her, “What do you take me for, someone who just had a stroke?” The numbness has since completely gone away, I don’t get dizzy anymore, my chest doesn’t hurt with much frequency anymore, and I can even play Tony Hawk with the same dexterity I used to have, knocking out one million point runs. But there is still panic, still anxiety, still that feeling that I’m living on borrowed time, so much so that sometimes I’m consigned to the feeling that I’m just waiting around to die. Many days it’s been a struggle, not just to understand how to navigate life and living after a stroke, but how I’m going to pay all the hospital bills. How, despite all the care and concern, I feel alone, and incapable of expending energy on my hobbies or the people I care about - even the things that matter the most to me, like streaming, or video games.
In the past month, I started writing a fictional novel, as a means to confront how much separation anxiety and the rejection sensitivity it manifested into later in my life has affected my relationships, and it’s already resulted in some positive benefits. Unlike the 220,000 novel that I wrote a decade ago that ended up addressing a previous emotional issue I had, I don’t intend to throw this one away. I intend to finish it, and see if anything can become of it. I’m only 4,000 words in, and I decided to take a break from it so that I could start writing this, a now 7,000+ word memoir about the worst week of my life. If you cared enough to read this, and I’m sure some of you have, I appreciate it, even if I’ve been struggling constantly with things like hope or normalcy. I think all this writing about the past year will help immensely in learning to heal mentally and emotionally now that I’ve healed so well physically, and that it’s time to remember what joy and love feel like.
If my life had a theme song in 2023, it would be “The Vampyre of Time and Memory” by Queens of the Stone Age. I hope I can come back here in twelve more months with a more positive song than that.