Six-Month Brain Damage Anniversary! (Or: “Dabid’s State of Mind “)
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.
SPoken by someone who has an invisible illness…it always hurts when people assume that because to them you look fine does not mean that you are..and for what its worth I am damn proud to have befriended someone as courageous as you