Gratitude

April 28, 2020

Amidst Covid-19, I have finally re-entered the workforce at 20 hours per week. The combination of the two has me thinking about gratitude.

Since my accident, I have been suffering with a lot of things my injured brain struggled to properly: working memory, memory formation, attention, processing speed, decision making, social and emotional intelligence, creativity, stress regulation, learning, thought organization, external stimulation regulation, metabolism and appetite, balance, leftside coordination, blood pressure regulation, and more. Because all of these systems were hindered, it meant that my body has had to work extra hard. Take out activities like exercising and working and my brain is still exhausted by the tasks required to be alive; I am chronically fatigued.  This is not even touching on the fact that my entire life was uprooted, which was emotionally difficult to reconcile. Though it wasn’t back to normal, my quality of life drastically improved during PoNS because a lot of things those background tasks were automated again, meaning activities were easier and I wasn’t baseline fatigued. I felt like myself, like good ‘ole Carlie – engaged, passionate, curious, goofy, busybodied, energetic. Newly reminded of what it felt like to have a healthy brain, it became clear to me that all 22 years of the life I had lived before my accident were done so completely unaware of the degree to which I was fortunate to have a healthy brain. 

That’s the thing about gratitude: if people never experience trauma, I believe the human mind is literally incapable of fathoming it. And though I had such a manic period of enlightenment after PoNS, I have recently felt like I have regressed backward because my health once again is wavering because of how demanding this new job is for my brain. Every day after working just four hours, I feel like I have run a marathon, I’m starving, I probably have a migraine, and I need to go straight to bed. Despite how peaceful and happy I felt before starting this job, I am reminded every day that indeed I am not as recovered as I thought. This recovery feels like it has been lifetimes, like a bad psychedelic trip that never seems to end. 

Amidst the suffering, depression, and existentialism of late, I came across a piece written by a Covid nurse in a New York City ICU. The grief she described she was witnessing was, as I already had accepted logically during my first gratitude enlightenment months ago, unimaginable to me, a person who should be well-versed in trauma, right? Reading her piece though, my whole heart dropped so deeply into my chest. My first though was: the grief she has watched makes my TBI look like a cakewalk. 

I’ve spent the last 28 hours wrestling with how scary it is that suffering has no limits. Infinity, just like gratitude, is a concept that the human mind cannot truly grasp. Reading about the patients and families she has cared for, I realized that despite everything this last year has been, and debilitating the chronic fatigue and migraines are,I would give anything to be in the exact situation I’m in at this moment if I were in the shoes of her patients or their families. 

I think perspective is necessary to truly hold gratitude, but  perspective itself requires a degree of comparing one’s misfortunes to those of others. Comparisons, by nature, necessitate a standardization of units – the apples and oranges concept, you might say. The mother of a young deceased Covid patient could be much more traumatized than I have ever been during the last year, especially because I didn’t lose any loved ones. However, if she were capable of grasping what it’s like to lose her mind, perhaps she’d say I have it worse off and feel grateful for the fact that during the grieving of her son, at least her brain was working well (she had control of her body, she could problem solve and think with clarity, she had energy to go about her day, she trusted and knew herself). 

But comparing the grief associated with losing her son and the grief of becoming severely brain injured just doesn’t seem right. For this reason, gratitude and mindfulness must be an actively approached part of our daily lives if not handed to us upon risiling from an unforeseen hardship. Though I’m entitled to feeling my own pain, I must at the same time savor every phone call I have with my loved ones; though the mother of the young patient will wail for her son, she must take note of her ability to easily make decisions and communicate effectively in the moment of crisis climax. 

This is the first longform piece of writing I have done in more than a year and maybe it doesn’t make any sense to you, but there is some clarity in it, at least for me. It’s been hard to clearly wrap my head around such complicated conceptualizations but I’m working on higher order tuning in addition to surviving a part time job right now. This took a lot of concentration –––fuck, i was supposed to rest for the rest of the day. Hope tomorrow goes okay.

hellish metaverse

SEPT 23, 2021

This is mostly a journal entry. Didn’t edit it. 

I’m absolutely not okay with giving up more data to tech giants. They have my digital fingerprint, which includes my community, education and economic history, interests, & political beliefs. It’s very jarring how much they know about me. I feel like my parents typing that out. 

What tech giants don’t have a full picture of is how my brain reacts to the world in real time, when I’m not being tracked. While they can predict what I might buy if they can nudge me about it enough times and in a certain influential way, no AI could predict how I might change as a person while I go through the incredibly unpredictable “life” thing. Thank God. AI is limited by how much data it has, and the hopeful part about our current relationship with AI is that 24/7 data collection isn’t occurring. 

I’m mostly afraid of entering such a space where Meta and its affiliates firstly store and secondly interpret data points about my feelings, thoughts, and real-time actions, which are largely inaccessible to the giants today. The more often they can keep me in the metaverse, the more data they’ll have, which they would love to have. Next, they have so much data that they can create a model for my neuropsychological functional network. With that, they will create events, content, and functionality to my metaverse that literally massage my brain to change in ways that are optimizing for some KPI that Meta desires (money, power). Having worked in Martech, I now there isn’t really a limit to the AI models that can be used to predict things about users. Before I even have the autonomy to decide on my own or let my brain react to the universe as it naturally, spontaneously occurs, I am a Meta peasant, reacting to the metaverse, which is more crafted than spontaneous. Let’s not even go into how our brains have evolved in the natural universe, not some AI-driven metaverse. 

Anyway, if the outcome that Meta was optimizing for was utilitarian, I actually would be fine with entering the metaverse because I guess I don’t think reality in itself is necessarily a gift. For the first month after my TBI, I was not in touch with reality – I was convinced I had a sex change surgery that entailed implanting Stegosaurus spikes on my back, that my hospital was lesbian-run (??), and that my best friend admitted to me he was in love with me. None of this happened in “real life”, but from inside of the reality I was experiencing, I was at least neutral. I was like “huh, yeah, I guess this is what’s going on”. Dreams are like that too – as weird as they are, you’re like “okay, sure”.  

Unsurprisingly, I would much have preferred that to the one I woke up to where I was disabled, extremely ill, selfless, confused, and hopeless. Because of that experience, I’m not here to claim “real life” reality is the only way, just because it seems natural. Schizophrenics report that during their most intense periods of illusionment, they were incredibly happy – as long as they weren’t harming themselves or others, I don’t think their experience should be labeled as inherently negative. At the peak of my suffering in the aftermath of my accident, I begged to re-enter a happier universe, the bizarre sex-changed one included. It was very hard to accept that I had three options: become dependent on street drugs, kill myself, or just be steadfast with my situation and make it work. Escaping to a happy metaverse wasn’t an option and I’m SO glad today that I chose steadfastness. 

But let’s say there was a happy metaverse to escape to if “real life” reality is pure suffering. This is a vision that techies get thrilled about and I’m sure even Mark believes he will build this. However, I guess I believe in the fact that brains are ultimately self-serving. Our capitalistic society is evidence of that, no? Mark Zuckerberg and Co. have already proven that money and power are their core KPIs. See Facebook and Instagram. They exploit our human need for socialization, apply AI algorithms that optimize engagement (addiction), and make a huge pile of money on ads and e-commerce. Is there really hope that they’d create a utility-optimizing metaverse? I’m not excited about society handing over their brains to Meta. 

on cancel culture

July 21, 2020

Throughout the polarizing events of 2020, I spent time both in Philadelphia and rural Wisconsin.  I started working part time in April and the transition was difficult. More difficult was doing this while quarantining alone in Philadelphia. So I went home for a few months. I saw at dinner tables with my conservative family who ridiculed the mask mandate, the economic shutdown, and BLM continuously. I sat there often thinking, Hey, I’m pretty sure…I learned some things in college and I don’t agree with you. But what was it I disagreed with? I couldn’t label it. Like most specific topics, these politics were wiped from my brain during the accident. I wasn’t armed with rebuttles and even if I had been, I wouldn’t have been able to articulate them in a debate. I was still quite cognitively juvenile. So I sat there, being scoffed at for my “delusional thinking” at supporting various left-leaning movements. Wait. Am I delusional? Am I a bad person for thinking what I think?

So I went to my friends from college, asking for advice on how to defend some of these political topics. They replied sparsely and at the time it felt like they were nearing canceling me for even entertaining conversation with those hopeless bigots who were my family members. 

Regarding the recent accidental offense by the Dean of USC’s Marshall School of Business, I appreciated the school’s Susan Hermling's point about society’s current combatant method of canceling. She said, “the only way out of difficult situations like this one is through dialogue and understanding. There are no shortcuts; only dialogue and understanding will work. The alternative is further suffering and pain for everyone involved.” 

I agree that our method of combat shouldn’t be canceling by default. Situations like the one at USC can occur, but it’s also an ineffective way at getting the Right to listen. Many of the conservatives I know don’t acknowledge the potential validity of most cancelations at all (which, as far as lacking open-mindedness, is undoubtedly a character flaw on their part). But in order to change a person’s mind, we sometimes have to be willing to play their game unfortunately, and being conscious of the method with which we combat is one way to get closer to winning.