Post-operative round up
First let me say, before anything, that despite the fact that the final results weren't everything I hoped they could have been I'm not disappointed in the ending. I still have my health, my motor functions, and other faculties. And, even though I couldn't get a "problem piece" of my brain removed, I'm still eligible for the implantation of a nerve stimulation device at some point in the future. The idea behind that being to track and regulate seizure activity in the brain with the addition of medicine. "It's the future of epilepsy health" the surgeon Dr. Doyle told me on one of my last days. I'm fine with that.
And, unlike this surgery, nearly 2 weeks of inpatient monitoring won't be necessary. The whole massive song and dance this debacle was. They've got pretty much maximum information on my brain and the seizure network that haunts it at this point. Now it just comes down to addressing it with new methods.
The lead up to the operation was inspirational in the sense that I had a massive amount of friend support. There was an official going away party at No Return and then an unofficial one the next day with friends who took me out to Odessa and Double Down, all the while spending some of my last days with Ocasio who had become increasingly close over the past weeks. Shaun at No Return did a tarot reading that seemed to offer optimism with her and said it required my open communication and open mindedness but that there were very fruitful possibilities. She was on my mind quite a bit before the anesthesia did its work and put me under and I was grateful to have a nice calming thought before that moment.
Headache after the surgery was a goddamn bitch but I managed to survive it with a fair share of intravenuous narcotics. Mom hung around and Ocasio came by as well, carrying my over-sized book bag and possessions to my new room. She's a tiny thing, only about 5'1, so she slept in my hospital bed with me on some nights. Some days were just fever dreams, particularly early. I completely forgot what I was doing, where I was, if I was even in reality, or what the hell was happening. Kobe Bryant's helicopter going down was just another of a laundry list of anti-reality newsdrops that worked its way into my consciousness in those early days. I honestly don't think I've ever been that totally detached from surroundings before. I'd see people, like my Dad over the weekend, but it wouldn't even really register as being real.
Christine, from the Pyramid Club, came by a couple times and took a good photo of me. Chandra stopped by as well as was present for a seizure, which understandably freaked her out a bit. Susan and her mother visited, Rory sent me flowers, my sister came, and Ocasio was a regular of course. I was happy my Dad came by both weekends, and drove me home, as he sort of gets the reputation as being very "hands off" once you turn 18. I think that was my mother's expectation at least and I know that she was happy and relieved that he came through the way he did.
Coming home was a weird experience, re-acclimating in particular. Firstly, I think Mary-Lee was wondering how I was doing because she jumped back into my mind mostly on the ride home. It was pressing so I thought it best to send her a message letting her know how everything went. Our last communication was a brief amicable hello on New Years Eve but she decided to keep her distance after that, considering I had since blocked her on social media. It was a nice exchange, we spoke briefly about the 49ers (who I proceeded to watch lose the Superbowl in grand garbage fashion), and we decided that we can play cell phone games with each other to pass the time. We've been playing words with friends over the past days and it's been a nice no pressure activity. Although the fact I keep winning is getting a bit tiresome for her. In this case, though, trading a somewhat passive innocuous activity for interpersonal communication has been a net positive for both of us, I think.
My days here, at my mom's, have been difficult though. Some days I felt really depressed and collapsible. Just incredibly restless and hard to get moving. Even doing things like listening to music felt like too big of an emotional commitment. I also was having a weird sort of, "what's the meaning of life?" mindset where I was darting from thought to thought trying to identify something that I found deeply motivating and inspiring and just kept coming up empty. I was quick to aggravate and had a hard time holding my attention span. Felt bad for my mom who has been doing a great job, basically waiting on me, but without me having the real energy to go downstairs and hang out with her. I feel like a bit of a spoiled brat for being that way but I can't help it. I think it's a mixture of stir crazy, tapering off hospital medicine, and the actual head trauma itself.
This Monday I am returning to the city to get the staples removed from my head and to have a follow up appointment with my neurologist to discuss future plans. From there I'll be heading back to Queens where I hope to begin to get my feet under me again bit by bit. My productivity has begun to go up starting yesterday so I'm banking on the continuation of that trajectory. Focusing time on my next NRPPS event, also listening to more new music again, and preparing to go through and put necessary cue points into my old DJ program since my new one has become unreliable crap. Probably do a bunch of that tonight and also start reading again.
I know it doesn't sound like a big deal but I tell you just to be satisfied working on something feels like a big deal for me right now. It's really been a pretty harrowing week for me.
But as people have suggested, it was a brave decision on my part to go through with this, and challenging, but I'm pretty strong in heart and mind and body and this is probably just a roadblock on my quest to regain my sense of stronger self. It was a tough start to the year but that just means that there's a lot of upward mobility from this point I like to think. Well, I'll see you on the flip side as this journey continues.
wasz, ryan
And, unlike this surgery, nearly 2 weeks of inpatient monitoring won't be necessary. The whole massive song and dance this debacle was. They've got pretty much maximum information on my brain and the seizure network that haunts it at this point. Now it just comes down to addressing it with new methods.
The lead up to the operation was inspirational in the sense that I had a massive amount of friend support. There was an official going away party at No Return and then an unofficial one the next day with friends who took me out to Odessa and Double Down, all the while spending some of my last days with Ocasio who had become increasingly close over the past weeks. Shaun at No Return did a tarot reading that seemed to offer optimism with her and said it required my open communication and open mindedness but that there were very fruitful possibilities. She was on my mind quite a bit before the anesthesia did its work and put me under and I was grateful to have a nice calming thought before that moment.
Headache after the surgery was a goddamn bitch but I managed to survive it with a fair share of intravenuous narcotics. Mom hung around and Ocasio came by as well, carrying my over-sized book bag and possessions to my new room. She's a tiny thing, only about 5'1, so she slept in my hospital bed with me on some nights. Some days were just fever dreams, particularly early. I completely forgot what I was doing, where I was, if I was even in reality, or what the hell was happening. Kobe Bryant's helicopter going down was just another of a laundry list of anti-reality newsdrops that worked its way into my consciousness in those early days. I honestly don't think I've ever been that totally detached from surroundings before. I'd see people, like my Dad over the weekend, but it wouldn't even really register as being real.
Christine, from the Pyramid Club, came by a couple times and took a good photo of me. Chandra stopped by as well as was present for a seizure, which understandably freaked her out a bit. Susan and her mother visited, Rory sent me flowers, my sister came, and Ocasio was a regular of course. I was happy my Dad came by both weekends, and drove me home, as he sort of gets the reputation as being very "hands off" once you turn 18. I think that was my mother's expectation at least and I know that she was happy and relieved that he came through the way he did.
Coming home was a weird experience, re-acclimating in particular. Firstly, I think Mary-Lee was wondering how I was doing because she jumped back into my mind mostly on the ride home. It was pressing so I thought it best to send her a message letting her know how everything went. Our last communication was a brief amicable hello on New Years Eve but she decided to keep her distance after that, considering I had since blocked her on social media. It was a nice exchange, we spoke briefly about the 49ers (who I proceeded to watch lose the Superbowl in grand garbage fashion), and we decided that we can play cell phone games with each other to pass the time. We've been playing words with friends over the past days and it's been a nice no pressure activity. Although the fact I keep winning is getting a bit tiresome for her. In this case, though, trading a somewhat passive innocuous activity for interpersonal communication has been a net positive for both of us, I think.
My days here, at my mom's, have been difficult though. Some days I felt really depressed and collapsible. Just incredibly restless and hard to get moving. Even doing things like listening to music felt like too big of an emotional commitment. I also was having a weird sort of, "what's the meaning of life?" mindset where I was darting from thought to thought trying to identify something that I found deeply motivating and inspiring and just kept coming up empty. I was quick to aggravate and had a hard time holding my attention span. Felt bad for my mom who has been doing a great job, basically waiting on me, but without me having the real energy to go downstairs and hang out with her. I feel like a bit of a spoiled brat for being that way but I can't help it. I think it's a mixture of stir crazy, tapering off hospital medicine, and the actual head trauma itself.
This Monday I am returning to the city to get the staples removed from my head and to have a follow up appointment with my neurologist to discuss future plans. From there I'll be heading back to Queens where I hope to begin to get my feet under me again bit by bit. My productivity has begun to go up starting yesterday so I'm banking on the continuation of that trajectory. Focusing time on my next NRPPS event, also listening to more new music again, and preparing to go through and put necessary cue points into my old DJ program since my new one has become unreliable crap. Probably do a bunch of that tonight and also start reading again.
I know it doesn't sound like a big deal but I tell you just to be satisfied working on something feels like a big deal for me right now. It's really been a pretty harrowing week for me.
But as people have suggested, it was a brave decision on my part to go through with this, and challenging, but I'm pretty strong in heart and mind and body and this is probably just a roadblock on my quest to regain my sense of stronger self. It was a tough start to the year but that just means that there's a lot of upward mobility from this point I like to think. Well, I'll see you on the flip side as this journey continues.
wasz, ryan