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What having a stroke *actually* felt like

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Video summary

Four months after suffering a severe stroke, the speaker returns to share a detailed update on her recovery journey, which began unexpectedly during a Jiu-Jitsu training session. While preparing for a competition she had trained for over a decade, she experienced sudden, debilitating symptoms including intense head pain, vertigo, and an inability to move or speak clearly after being rolled with a much larger partner. Initially misinterpreting the incident as a bad migraine due to past negative experiences with the medical system, she eventually sought emergency care where doctors diagnosed her with a vertebral artery dissection that led to a stroke in the occipital cerebellar area of her brain. This injury severely impacted her balance, coordination, vision, memory, and ability to form words, forcing her into a strict regimen of rest and supervised walks for three months while she navigated the emotional toll of losing her primary source of identity and freedom. The recovery process has been physically and emotionally grueling, characterized by slow progress and significant limitations that are not immediately visible to others. Although she can now walk straight lines and speak relatively normally on good days, she still struggles with invisible challenges such as double vision, dizziness, nausea, and extreme fatigue from the constant mental effort required to compensate for brain damage. Social interactions have become particularly difficult due to her inability to track multiple speakers or follow complex conversations without becoming overwhelmed. Additionally, activities she once loved, such as drawing straight lines for art, have become frustrating exercises in fine motor control rather than sources of relaxation, highlighting that while she has regained about 75% of her function, the road ahead is measured in years rather than months. Facing the permanent loss of her ability to practice Jiu-Jitsu—a sport that allowed her to feel whole and disabled-free after losing a leg—she has decided to channel her passion into learning dance as a new therapeutic outlet. Dance offers her a way to rebuild balance, coordination, and improvisational skills while providing joy through connection with partners. Despite the grief over these losses, she finds hope in small victories, such as being able to turn on lights without triggering headaches or having moments of clear conversation throughout the day. She acknowledges that she is currently in a state of denial regarding the permanent changes to her life and health, preferring to focus on moving forward day by day rather than fully processing the trauma until she feels ready. Looking toward the future, the speaker plans to gradually return to work and resume posting on the internet, though she remains cautious about pacing herself to avoid setbacks. She recently experienced another frightening episode that mimicked a stroke, which turned out to be a hemiplegic migraine rather than a second actual stroke, providing some relief but reinforcing the fragility of her condition. With the support of her community and medical team, she continues to heal physically and emotionally, accepting that her journey is long and unpredictable. While she does not expect to return to 100% capacity anytime soon, she expresses deep gratitude for the generosity she has received and looks forward to sharing more updates as she slowly rebuilds her life one day at a time.
Read the full video transcript
well hello there my beautiful lovely internet friends it has been just about four months now since I had a stroke disappeared from the internet because I couldn't do anything but focus on healing but I wanted to come back because I'm feeling really good today things have improved I wanted to give you guys an update tell you what actually happened what has occurred since and fill you in on all the details this might be a bit of a longer video so I will just say for anyone who just the quick 30 second version I'm doing a lot better I'm not back to 100% I didn't expect I would be and I have no idea when or if that will occur but four months in I'm still alive made it this far okay so beyond the 30 second version when I woke up this morning knowing I was going to film today and I was really excited to get back to it and then I tried to start like putting things in words and like I don't fake anything for the camera but when you turn a camera on there's sort of like a certain energy that I I'm used to Bringing and I realized I this is actually a really difficult thing that happened a lot of the things that have happened since where it has left my body and my mind and I think talking about it will be good but I remain very overwhelmed by this year and what has occurred I love how they just switch places okay first and foremost what actually happened in my previous video where I very briefly talked about this because I was really out of it still mentioned that it was an accident in Jiu-Jitsu so I have trained in Jiu-Jitsu on and off for 12 years it is the love of my life I was training for a competition my first one since losing my leg I was really excited I was lifting four or five times a week I was training four or five times a week feeling really good about everything and I was at a very normal day of training I happened to be partnered up with someone who was a guy much larger much stronger and very inexperienced in the sport super common thing I said yes to Rolling understanding that as a small woman without a leg those matches are always really difficult and keeping yourself safe always has to be first and foremost in your mind so I rolled with him it was rough but I thought just like normal you know aches and pains kind of fine I went into the next match and about a minute in out of nowhere I felt like a baseball bat had been cracked against the back of my skull like night and day I was on the ground I couldn't even lift my head up the word vertigo doesn't seem to properly encapsulate how dizzy I was how completely incapable of even opening my eyes even lifting my head up I couldn't put words together there was a lot of head pain associated with it my whole body was shaking and I couldn't stop it and that went on for minutes I had no idea what was happening no one else had any idea what was happening it was bad and it was really scary it probably took me about an hour to be able to avenge eventually sit up eventually kind of start to form words better I knew I wasn't good I knew I was super out of it my balance was all off but I was driven home I remember getting out of the car and I like fell on the rocks in front of my house I was just I was not good I also was not thinking straight I did not go to the hospital didn't go to Urgent Care didn't talk to a doctor I was like let me just rest I don't feel good I'm just going to rest I've mentioned this before on my channel but I have had a lot of very unfortunate interactions with doctors and our medical system that has made me incredibly averse to ever going in if I do not absolutely think there is a chance something is actually wrong so for I think it was a couple days I didn't go in I realized I couldn't really use my hands like they weren't working right I could move but it was like they were a second or two too late and then very imprecise just this crazy head and neck pain that was beyond what I normally experience couldn't form words stuttering very out of it just not good eventually I broke down and scheduled a virtual Urgent Care least invasive thing I could think of I just wanted them to be like yeah you probably have a bad migraine go sleep it off but within like a minute or two of talking to this doctor she was like Joe I need you to get out of this call do not drive yourself get immediately to the ER internally I was like oh my God this is going to be so annoying I'll have to be there for hours they're going to say everything's fine and then just send me home I shouldn't even be there but you know I guess better safe than sorry so I ubered into the hospital which is always such a funny thing to me I don't know explained what was going on told them you know I get bad migraines I have weird neurological stuff I think I'm probably fine but this weird thing happened in Jiu-Jitsu and now here's all the things that feel weird I cannot thank the doctors and nurses and staff at Denver Health took things really seriously and the doctor came back into my room very serious which is always off-putting as a patient but he told me that they had seen something and that I was going to be admitted to the ICU I had a vertebral Artery Dissection which basically means that one of the arteries in my neck which Supply oxygen and blood to your brain had been very damaged totally forgot to like tie it back together I think that it was that first role with the big guy where it was pretty rough that I believe my neck was damaged then it probably took a few minutes for the clot to form then be released that's my best guess anyways and these things can cause Strokes there were indications that I had had one so everything went into highpe speed very quickly I was admitted put on medications to stop any future Strokes things like that and an MRI later that night confirmed that I had had a stroke to my occipital cerebella area the right side of the back of my brain which controls things like balance coordination Vision generally I found really affected my brain with things like memory word finding word forming following conversation just all of that so I was in the ICU for a few days I was in the hospital for a few days and then I was sent home with very stern warnings from multiple neurologists because of the injury that caused the stroke I was not out of the woods yet if I did anything it could cause another stroke and that could be really bad so for the next three months I was told to do nothing to go for short supervised walks with someone else next to me who could like catch me if need be not to lift anything heavier than maybe a gallon of milk nothing overhead no forms of exercise and so I went from training for a Jiu-Jitsu competition to literally sitting on my couch right over there trying to begin the healing process physically and emotionally uh I felt awful healing didn't even feel like it was happening everything is so slow I had to keep reminding myself that everything is temporary being stuck at home alone without any of the tools that I used to rely on to get through things was very difficult I couldn't have my big dog Leo home for the first two months because doctor said you know he's a 90 PB dog he could knock you over that cannot happen and so he actually stayed uh with his trainer who he was with when I had my stroke she was absolutely incredible I'm to put her information down below if you're looking for a good dog trainer in Colorado Springs and then to encapsulate a lot of time in a single sentence I tried to get better right I went to physical therapy I went to occupational therapy I went for incredibly short walks every day day like I couldn't walk further than like I don't know a couple hundred feet without being so off balance and so dizzy and so out of it that I had to sit down and like lay down for the rest of the day close my eyes my vision got very affected where everything was like double vision blurry it felt like my eyes weren't tracking right screens were really difficult I want to say real quick I could not have gotten through that time without the support of a lot of people in my life and also without the incredible gener generosity that a lot of people showed me from my last video I wasn't able to work for quite some time and the amount of generosity that was shown to me from you guys I am can't tell you how much that helped so I could actually like try to heal I feel so lucky and so grateful thank you a couple of weeks ago I had sort of the post 3mon followup you know CT Scan Imaging where are we now what does moving forward look like and I got some good news and some bad news looks like healing is taking place the way that it should that artery is you know still damaged but it's healing the parts of my brain that are now just black holes on images because apparently I believe how it works is the gray matter dies you know when a stroke happens you don't get oxygen to that part of your brain and then it will like fill with fluid oh my God looking at my M was crazy cuz there's just just these black holes in my sellum the very difficult news uh for me anyways is that if I have an interest in staying alive I can never do Jiu-Jitsu again and there other activity restrictions when I say that I love that sport it's not just like a cool hobby right if you were to ask me to describe myself I'd probably say hi I'm Joe I'm a a public speaker and I do Jiu-Jitsu that's like what comes to mind it was a huge part of my identity I didn't talk about it a lot online because when I was there I was just there like that was just for me and I have never found a sport that made me feel so free uh especially after losing my leg that is the only place in the entire world I do not feel disabled it does not feel like a disadvantage obviously it was but the way that I was like free of my prosthetic leg usually didn't cause additional pain and I learned how to use my body my different body as a weapon right figured out how to do things no one else could do and could hold my own against able-bodied people for years going through a lot of stuff in life it has sustained me and I'm no longer 20 and think I'm invincible so I did get second opinions for my own peace of mind but I will not be returning to the mats now nothing will ever replace that sport for me but in being like like so what do I do with myself how do I find other things that really help my mental health and maybe fill some of those needs that Jiu-Jitsu was fing for me I have decided I'm going to become a dancer keep in mind that I was not super coordinated or balanced before there were holes in my brain that deal with balance and coordination but uh partnered dancing so beautiful and so cool to me like learning how to like improv and adjust to someone else's movement all of that brings me a lot of joy and so as on days that I'm feel like I'm able to I've begun going to dance classes and dances it works on a lot of those functions of my brain that experience deficits from the stroke so it's therapeutic in a number of different ways as I grieve losses it's also cool to find new things so now it is four months later you might be able to tell if you watch the last video that I sure look like I am doing a lot better and I am those first three months of healing doctors said that they would be really important and oh my God they were I I would say it probably took almost exactly three months until I was like I think I feel like a person where I would like have moments through the day where I was like I just had a whole conversation with someone and I was able to track it like I wasn't stuttering over my words okay cool maybe there is hope and I feel like a lot of pieces of healing all those weeks of doing literally nothing sort of all came together a few weeks ago and I started feeling just so so much better um miles to go but so much better I kind of feel like I'm back to 75% it varies on the day especially for short periods of time I feel like me I I look like me I'm able to act like me but there's so much going on in my brain to compensate for the damage that was done that I get tired really easy I get exhausted really easily I get headaches all the time lights sounds stimulus some days are really difficult other days totally fine like today I even put a light on for this video and it doesn't bother me which is mindblowing considering how things were just a few weeks ago even I've noticed that social situations by far are the most difficult like trying to track more than one person talking to me at a time I just like uh get super out of it can't follow conversation have to like tap out and go home but I recognize that this is going to be a long process a lot of the the continued effects are things that you can't see you know I can I can walk in a straight line I can do things I look sort of balanced sort of coordinated I can speak pretty normally a lot of the times but there's so much that's going on in my brain to be able to do that I still have a lot of issues with vision and balance that dizziness a lot of nausea just stuff that's going on in the background that I think will take a very long time for continued healing to take place also one thing I have not been able to return to after stroke well is drwing I absolutely love dry but the stroke definitely affected like the fine motor control so I can still draw I can still color but straight lines coloring the line and anything like that is just really frustrating because it's hard so art is no longer like a form of relaxation and and everything it's like frustrating so I'm working on it as part of therapy and hopefully one day it will get back to just being enjoyable and maybe I'll be able to fully control these guys recovery from a stroke like this is not measured in weeks or months especially after the first few months it's measured in years so it's going to be a while and I'm going to continue working on that continue figuring out what I'm capable of from an emotional perspective as I was going through all this I knew that it was a big deal I knew that a lot of things had changed I knew that there were losses things that were really scary I kind of figured that as I began returning to quote unquote normal life that a lot of the emotions from all of that might hit because it just felt like everything was on hold for three months everything was on pause I was in this weird Twilight Zone of every day being the same mostly just being at home or doctor's appointments crocheting feeling really not good and and then as I started being like Oh I can drive I can you know go do this thing I think I was correct in thinking that that is when a lot of the emotions from what has happened would hit I will say right now I am firmly planted in denial I know this my therapist knows this I don't really want to process or think about a lot of the things that have occurred or how it's affected me or how my life is permanently altered along with my brain honestly I don't think I'm ready to come to terms with some of the permanent or at least permanent for the foreseeable future you know how this is altered my life and my everyday experience and my health and that's really all I can say for the time being because I don't have any more words yet everything felt like it was moving in the right direction until midnight uh about a week and a half ago when I stood up to go to the bathroom in the middle of the night and suddenly that same feeling that I had when I had the stroke started hitting out of nowhere like 0 to 60 I realized I couldn't stand up straight couldn't keep my balance was really struggling to think straight put words together I was just super out of it I was having difficulty controlling half my body I had enough presence to be able to call 911 get an ambulance here they got me into the hospital pretty quickly initially they did think that it was possibly a second stroke at one point I couldn't I couldn't move at all like they would have me try to hold my arm up or try to hold my leg up and it would just I couldn't do I couldn't roll over on my own not going to lie I did actually think I was dying I have never had that experience like I've had a lot of situations where I realized it was mere death or I could have died but I've never thought in the moment oh my God I'm not going to like get to say bye to people felt like I felt myself slipping away and I think a lot of that was driven by the terror of a second stroke happening and knowing that my odds of surviving that would be very low Andor the damage that it would do to me would be very extensive pretty immediately they put me on this crazy blood thinner called tnk that will like dissolve everything in your body like if you're having a stroke blood clots things like that after a lot of tests and a few days in the hospital they determined either the blood clot broke up the medicine did its job very effectively um or more likely I had a hemiplegic migraine which mimics the symptoms of a stroke it's possible that with everything that's happened to my brain in the last few months you know never having that kind of a migraine again maybe I'm more prone to having them within a couple days it passed I was able to go home a few more days of recovery I'm feeling good again moving forward I thought I was going to have a good sentence to like encapsulate moving forward I don't feel like everything is very much Moment by moment day by day I've done a very good job of listening to my body trying to Pace myself following doctor's orders to a tea as I am able to I will be returning to the internet returning to work slowly but surely which I'm very excited for because it feels like it's time at least to you know ease back into it I'm going to keep taking a day by day and eventually I will move out of denial and process things with that being said I feel my brain starting to fade a little bit my dogs are really wanting to go outside so I'm going to end this video here you watched all the way gosh thank you I think I talked a really long time but yeah I think you can expect to see more videos in the near future which I'm very excited for because I've missed it a whole lot I missed you guys guys to you my beautiful lovely internet friend thank you so much for spending a few minutes out of your day here with me today hearing my story you could be anywhere else in the world doing anything but you chose to hang out with me for a few minutes truly appreciate that I love you guys I'm thinking about you and I will see you in the next video it's been a long time since I got to say that