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Category Archives: Strokes

Six-Month Brain Damage Anniversary! (Or: “Dabid’s State of Mind “)

Penguin Dome! Posted on 03/17/2022 by Dabid!03/18/2022

Today is the official six-month anniversary of when I had my blinding quadruple stroke, so I wanted to use today’s entry to reflect on how my life has changed since that event and commemorate what my present state of mind is.

To say that these six months have been the most difficult of my life would be an understatement of hyperbolic proportions. Suddenly becoming mostly blind at this point in my life is beyond debilitating. It sort of goes without saying, but virtually everything you do from when you wake in the morning until you go to sleep at night is dependent upon your vision.

It’s next to impossible for me to put how broken my vision is into precise words, because even after half a year of talking to doctors and therapists, I still really don’t understand it myself.

What I do understand, though, is that even with all of the vision therapy and experimental research I’ve done over the last six months, I would still say things have only improved by 0%.

I’ve been rather dreading this six-month mark, since that’s the traditionally agreed-upon cutoff for when chance of recovery drops to zero. But my neuro-ophthalmologist already told me I had a 0% chance of recovery after two months, so I’m a bit numb to it by now. I’m doing everything that can be done, so I won’t have to live with the regret of thinking I could have done more, but that’s cold comfort when nothing is helping.

Playing video games and watching TV/movies are next to impossible, since the on-screen motion just processes in what remains of my brain as flashing blurs. I mostly just listen to stuff anymore (I even got a dreaded “Audible” account, which I admit is not as bad as I thought it would be).

Reading comics is a nightmare, as my brain cuts off half of whatever I’m looking at. Whether I focus on a single panel or a whole page, half of whatever I’m trying to see blurs away. I’m getting better at puzzling out what I’m seeing, but image processing is still an immense challenge overall.

Just web browsing and typing on my phone is an ordeal, but with hundreds of hours spent doing it since my accident, I’ve gotten a bit better at typing without seeing half the keyboard and fixing errors as I make them so that the mistakes aren’t lost forever as my eyes move on to the next word.

Collecting is still a driving focus of my life, but a large amount of the joy of getting a new toy is definitely lost when you can barely see it at best and can’t see it at all if your eyes move away slightly. I’ve started to include additional context and personal anecdotes in my reviews and unboxing videos to make up for some of the discussion of the actual collectibles that’s lost to me not being able to see them.

You might think I would be buying less since I can’t independently drive to stores anymore, but I’m getting really good at making copious amounts of impulse buys online instead.

I haven’t thought too much about going anywhere or visiting anyone, because even if I could get somewhere else, what’s really the point of traveling to something or someone I can’t see anyway?

I think it’s an ironic and suitable Hell for me that after living most of my life distancing myself from others (consciously or otherwise), I end up being permanently distanced from living in this world and having normal relationships with others by an abrupt life-changing injury.

One of the hardest things has been coping with the fact that I look fine to friends and family from the outside (probably partially due to my propensity to overachieve through effort and force of will), but from my point of view the world is a nightmare kaleidoscope it’s a battle just to navigate through every day. “You don’t seem to be limited at all!” What a joke.

It’s still really hard for me to comprehend that this is forever—that I won’t wake up someday and be able to see the world around me and be able to interact with it as I did for the first 39 years of my life. I’ll never finish Cuphead, watch all those iconic normie shows and movies I wanted to experience, play Smash Bros. competitively or read all those comics Omnibuses I’ve accumulated and be able to really comprehend what I’m seeing.

If all the things I love aren’t truly accessible to me anymore in a manner that allows me to appreciate them, I have to wonder a little bit about what meaning there is in living on in this condition.

I haven’t given up, though. A wise ninja once told me that it’s all over once I give up on myself, so I need to keep going nonetheless.

I still have over 5 months left before the deadline I set for myself to finish this book, and I know in it’s completed form it will somehow be meaningful to someone and help them in their journey. I know it.

Posted in Life, Strokes | 1 Reply

Erased (Or: “Dabid’s Backup)

Penguin Dome! Posted on 03/11/2022 by Dabid!03/11/2022

I don’t really have any memories from the day of my strokes. It’s weird knowing that you were awake… conscious… doing stuff and having conversations… maybe having existential epiphanies about life and existence… but all memory of those things has been burned away forever.

I say “burned away” because something I do have clear memories of is a crazed hallucination I had on the first or second night I was off life support in the ICU. In my “dream”, I was sitting in a room—in my mind—and seeing a film strip of memories in front of me on fire, burning to ash. If you’ve ever seen the anime “Erased”, it’s like the opening to that, but with fire.

(In “Erased”—which should be called “The Town Where Only I Don’t Exist” in the English version, but isn’t, because of chicanery—the main character is able to time travel his adult consciousness into his younger self in order to relive and change past events in his life. the opening shows his young and adult selves sitting in an otherwise empty theater. )

After my memory strip burned up, I was floating in a void, sure that it was the end for me. Somehow, I managed to burst out from the ocean of unconsciousness, a la Naruto in the “Diver” opening to Naruto Shippuden. I was utterly petrified and probably at my maximal blindness, but I can confidently pinpoint that moment as the moment I decided I definitely wanted to—and was going to—live.

My wife and best friend, Dave, were there when I burst out of life-death, and I remember telling my wife not to worry because Dave could just back up my consciousness and install it into a new clone body if anything went bad. Dave assured me he did not have that technology, but my brain was totally scrambled and I was unconvinced that the basis for Jonathan Hickman’s “X-Men: House of X/Powers of X” was fictional.

Central to the foundation of HoX/PoX is the concept that Charles Xavier stores backups of the minds of every mutant so that mutants never die permanently—but when resurrected, they’re missing any memories from between their death and most recent backup. I’ve spent a lot of time pondering the implications of that.

Any answers I might have arrived at the day of my strokes, regarding life, the universe, or my part in either, were burned away forever (along with who knows how many billion other memories and brain cells). But if large chunks of me were utterly erased permanently, just like that, was I still really the same “me” at all? I wonder.

For those who haven’t heard me gush about it, I consider House of X/Powers of X to be the greatest and most transcendent comic book narrative of our time. It redefined and reframed decades of comic book history in a way I had never seen before and don’t expect to see again.

I tried explaining HoX/PoX to my neurology team when they came in to evaluate me—including my concern that I’d already died and been resurrected to a backup body—but they also insisted that they didn’t have that technology.

Jonathan Hickman was definitely ahead of his time.

Posted in Anime, Strokes | Leave a reply

Hemianopsia (Or: “Dabid Goes Semi Blind”)

Penguin Dome! Posted on 12/03/2021 by Dabid!12/03/2021

When the doctor(s) in the ICU came to tell me about my vision loss, I didn’t really care. Part of that indifference was surely due to the plethora of drugs sedating me, but it’s also likely because I didn’t really care about anything at that time beyond no one else shoving tubes down my throat.

I would care a whole lot more about my vision (or lack thereof) in the months to follow.

While I’d had four ischemic strokes, the two larger ones that the doctors said they were worried about were in the parts of the brain controlling my vision and the left part of my body.
The official term doctors and therapists kept saying to me regarding my sight was “hononymous hemianopia”, which is basically a fancy way of saying that even though my eyes themselves are not damaged, my brain no longer processes input from the same half of both eyes (the left halves, in my case). It’s a condition that there is no scientifically-accepted treatment, medicine or surgery for and a wholly negative prognosis.

I’ve attached my actual vision field test results from November 2021 to this post. The black areas are the parts of my eyes that test as blind.

Dabid's Vision Field Test November 2021

This vision loss is infinitely more disabling than I expected at first, and it’s taken me over two months to even start to comprehend what’s happened to my vision and what it means. You might think I could just stick a badass eyepatch over my left eye like Carl Grimes to “block” my lost vision and be good to go, but it just doesn’t work that way. Because of the baffling way that human eyesight works, those left halves no longer functioning meant that I suddenly had complete loss of all of my peripheral vision on the left side and a huge, persistent blur added to my central vision (particularly the left side of the center, since central vision is made up of the good right half of my left eye and the blind left half of my right eye). There’s also dark shadows and dots and blocks that move around in my “working” visual field, which the opthamologist said is my brain trying to cope with the damage. This basically amounts to more than half of my whole vision field being completely fucked.

I thought maybe I could be double the badass and get a pair of half-eyepatches, but apparently that was a poorly-conceived notion.

It’s virtually impossible for me to describe what my post-strokes eyesight is like to someone not experiencing it. The best comparison I can make is to when you put on a cumbersome Halloween mask or helmet and realize you can only see out through limited eye holes in front. And then, take that restricted vision and imagine that the paparazzi runs up and uses dozens of high-powered flashes right in your face, so that the field of vision you do have unobscured is covered in moving, flashing spots of light that never go away.
Yeah, my new vision is like that—but worse and more complicated.

The large stroke to my occipital lobe was large enough that I have visual processing problems on top of the hemianopsia double vision, increased light sensitivity, contrast sensitivity and inability to track multiple objects with my eyes are some of the symptoms that have arisen from the visual processing damage.
There’s lots of crazy oddball stuff I’ve experienced as well. For the first several weeks I was awake, things I’ve seen thousands of times and can clearly picture in my mind’s eye looked very bizarre. The Pokémon sprites in Pokémon Go, for example, looked ultra angular as if they were made out of Minecraft blocks for weeks.

In addition, a layer of pixelation-like static (sometimes called “visual snow”) covers up the remaining usual field I do have. It makes it extremely difficult to process what is in front of me, particularly drawings or photos. Watching TV is also challenging for anything beyond slow-moving sitcoms and talking heads shows. Reading comics is an ordeal since my brain cuts off the leftmost words in bubbles and I have to puzzle out what’s happening in the artwork based on colors, shapes and contextual clues.

Perhaps most distressing is my inability to play video games where things or characters move around. My once-formidable Super Smash Bros skills have devolved to the point where Level 1 CPUs thrash me severely because my brain can’t keep up at all and the characters literally blink out of existence for me while I repeatedly and unwittingly self-destruct. I am a ruined shell of my former gaming self.

I have never attempted to drive since my strokes, since my license would be taken away even if I didn’t die (which I surely would).

Just typing up simple blog entries like this one is an arduous, tiring challenge that uses every iota of my willpower since the left half of my phone screen is blurred over no matter how I be position my phone, white space between lines and words is difficult to perceive, and I hit the wrong letters on the keyboard constantly since even the keys that aren’t covered in shadows split and move around in my pixelated, doubled vision.

The Harvard-graduated neuro-ophthalmologist I saw a few weeks ago said it was not a positive sign that my vision hadn’t improved in the two months since the strokes, and I had a roughly 0% chance of recovery, putting a number to and reinforcing what every previous doctor, nurse and therapist had told me. And so, I’ve been seeking out questionable alternative treatments and more opinions.

Luckily, I’ve watched hundreds of hours of Naruto and spent dozens of times that amount thinking about it. I also endured at least three years of pure garbage Naruto filler episodes. I don’t give up.

Posted in Strokes | Tagged Blind | Leave a reply

Spilled Pepsi (or: “Dabid Almost Dies II)

Penguin Dome! Posted on 11/04/2021 by Dabid!11/04/2021

At some point another Doctor Mask and Light told me that I was at Brigham and Women’s Hospital in Boston and had had multiple strokes (whatever ”strokes” were). I couldn’t talk because my teeth were biting down into something hard that was crowbarring my mouth open . I don’t have solid memories of this period, as I’d later find out I was heavily drugged up on somethings called fentanyl and propofol.

More Doctor Masks and Lights made me squeeze their hands, give thumbs up and try to lift my arms and wiggle my toes (I could do none of the above on my left side). But mostly, I was just oblivious to the world around me during this time. Thank God.

I heard voices in the room assert that”The wife was insistent that he not be woken up unless she was here”.

Clearly they botched that, since I was awake to hear their discussion.

I was also cognizant of something foreign in my throat that I didn’t like and set to work trying to rip it out. The Doctor Masks must not have liked that, because I went totally unconscious again at that point and they affixed some sort of glove to my hand to inhibit my ability to pull out the object running down my throat.

On September 18th 2021, my wife raced home from work early to find me passed out and unresponsive on the couch. She knew something was wrong when I didn’t immediately respond to her text messages hours beforehand about ordering something online (if there’s one thing I’m good at, it’s spending money online)and continued to not respond throughout the afternoon .

After finding me, my wife quickly called the paramedics, who burst into our house a few minutes later and took me away in an ambulance (there’s an experience I can scratch off my scorecard—booyah) to a nearby Emergency Room. I’m told that while the paramedics were trying to revive me and set me up on the stretcher, they knocked over and spilled my untouched(but uncapped) daily 20 oz. Pepsi that was on an adjacent table. What a waste.

Posted in Life, Strokes | 2 Replies

spiral (or: “Dabid Almost Dies I”)

Penguin Dome! Posted on 11/03/2021 by Dabid!11/03/2021

I think that I was trapped in a spiral,

 

plummeting downward for a long time,

 

but I couldn’t see it and didn’t realize I was falling at all.

 

Right up until I crashed  into the bottom.  
 
 
 
 
 

 
 
 
 
 

>< >< >< >< > < >< >< >< >< ><

 

I awoke in what I believed to be an unlit, dark room with someone wearing a doctor’s mask shining a light in my face. 

I could hear a couple people talking in the room with me:  “…[BLAH BLAH] Too late to reverse the brain damage…

And I thought to myself, “Uh-oh. That’s not good.” 

Posted in Strokes | 1 Reply

Recent Posts

  • High School VI (Or: “Punishment”)
  • Little Tortures (or: “Dabid Can’t Sleep”)
  • Florida II (Or: “Cows Type; Dabid Flounders”)
  • A Day in the Life (or: “Dabid Does The Laundry”)
  • Greasy Brain Bag (Or: “Dabid Has A Dream”)

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