Self-actualized ghosts

I was sitting in a cafe reading and I saw someone I used to know. It’s been years since I’ve seen him and we locked eyes. What a strange thing to see a past version of myself reflected back in the eyes of someone else. My past self was like sunlight and she’s dead and gone now. My replacement is interesting, but it’s still a bit of a shame.

And he came in to the cafe, ordered a coffee, and went on with his day, as if I hadn’t made it to 2023 and he couldn’t see me. Maybe I am a ghost, back in the past. Or maybe he wanted to spare us both the unpleasantness of an awkward conversation catching up over the last several years of our boring lives. I was actually tremendously grateful for that.

I finished my book, looked at the window and wondered why I had chosen to wear such a dumb hat. Sometimes I really feel like a teenager again. I feel so confident at the beginning of the day, putting on fun, sex and the city outfits and sauntering out the door. Ah yes, I am so stylish, no one will notice my cast or my scars. No, they will see my fun hat and my cool dress. Nope, they will see a weirdo in a dumb hat sitting in a small town cafe looking so out of place it’s painful while people I used to know actively ignore me in a desperate attempt to move forward with their lives.

So, I took my dumb hat up to the barista and asked them if anyone they knew had ever ignored them before. And we had a wonderful conversation, laughing and opening up about health conditions and awkward interactions. And I realized that whether I look back or move forward are choices I can make. It’s a bit harder when I spend so much of my time getting surgeries and going to the doctor, but there are moments; windows in between all the chaos of the world that still surprise me when I’m honest and I’m actually myself.

The system wasn't built for me

It’s become very difficult to exist in this system as a disabled woman. Every turn I take, I hit a wall. I feel like Frogger when he reaches a street full of traffic or a bunch of lawnmowers. I wait for one to pass, only for another to appear. Meanwhile, it seems like other people have the cheat codes so there is an empty street or clear lawn to pass through. My cousin Ian wrote me a note when we were 5. “Hey cuz, I have the frogger cheat codes, write me back”. Maybe that’s the problem, I never wrote him back and I didn’t get those cheat codes for how to be disabled.

A plant is born into its natural environment, with everything it needs to flourish surrounding it. The Golden Pothos lives in a humid, tropical climate, growing up the base of trees and living primary in a dark, shaded space, while a cactus lives in the open desert, with either sun and heat, or cool evenings. Even if they had a voice, they wouldn’t need to ask for more. Unless we took them away from their home and forced them to adapt.

But plants do live in our homes for years, some of them live with us our whole lives. Nature is resilient and adaptive. Its system is always changing. Humanity certainly isn’t flexible or dynamic. We don’t smoothly adapt, we grate our way slowly through changes, throwing a tantrum. It isn’t always the Fab 5 driving through the south, turning racists into gentle allies. That’s fabulous to watch, but that kind of change is not always realistic. Humans resist change. It scares us, because we worry about what could go wrong. Nature doesn’t mull it over, because nature doesn’t have a choice. If a queen bee decides to make changes in the hive, the hive makes some changes. When birds change their migration because of changes in the weather, they get in line. Or they die.

Systemically, there is hierarchy in nature, but that stems from survival. The strong overtake the weak, taking the nutrients they need to survive. The strong die off and the weak feed off their nutrients. And the cycle continues. Humanity’s system shouldn’t be hierarchical like nature. The strong don’t need to kill the weak to survive in humanity; actually quite the opposite. Humanity as a whole needs to come together to survive. We have no ideal model to copy, but pressing everyone into sameness, or placing some people above others makes no sense in terms of survival.

Unfortunately, that is our current model. We have an idea of hierarchy and yet paradoxically an idea of sameness that we seek in humanity. And speaking as a disabled woman, it is impossible to exist in a system that isn’t built for you. As someone with chronic illness, I have to handle medications, medication side effects, medical bills, managing doctors, health insurance, mental health costs, disability access in public spaces, figuring out public restrooms and benches, disability financial assistance pros and cons, treatments, surgeries, physical therapy, therapy, mobility aids, dietary restrictions, pain management. Imagine trying to tick off this whole list on top of your life, after an intense hike, while you have the flu, motion sickness, and food poisoning. This is a good indication of how someone with chronic illness feels on a daily basis and why it is harder to exist in a system set up for someone else

When I was a little kid, adults tested our intelligence by asking us to put the proper shapes into their matching empty spaces. I took them and with a mischievous smile, held each shape over the wrong space, and asked “does this go here?” They laughed, but they were nervous and encouraged me to finish the test.

I was already a shape that didn’t quite fit into any of the spaces and I was told that I should. There was a part of me that wanted to fit in, because I knew it would be easier. But there was a deeper part of me that already craved difference. I think the independence of each individual human is what creates the strength of humanity as a whole. I hope our system starts to reflect that, so that no one needs any “cheat codes” to get through it.

Harry Potter & Margot Robbie

I’ve heard that there are two types of people in the world, those who experience pain and do everything in their power to prevent it from happening to anyone else, and those who try to make others understand it.

Lately I’ve been thinking about Harry Potter. Yeah yeah, JK Rowling sucks, I hate that she’s even attached to him and that he came out of her brain (well maybe…there was a story a few years back about the possible real creator of the series, but at this point, it’s taken flight and JK has created what it is now…surprise gay Dumbledore and regret for Harry and Hermione not getting on…oops)

Harry Potter makes me so nostalgic for my middle school self. I loved middle school me. She was free. She wore stupid clothes and didn’t wear make-up or do her hair. She didn’t bother to stuff her bra. She was confused about why everyone had thrown away their favorite toys to fill their room with perfume and adult things. She was too busy reading Harry Potter and listening to Cuban, Hawaiian, and jazz music to give two shits about any of it.

Meanwhile, Harry’s parents died when he was baby, he was emotionally and physically abused and neglected, and some spooky, no-nosed fuck was stalking him and trying to murder him for most of his education. So, not great. Yet, people put him on this pedestal all the time. Most people were either angry or jealous, so they never got close to him. Adults, students, enemies…they just didn’t quite get it. And hearing how lucky he was when he needed to break down wasn’t helpful. He was just trying to survive, literally.

I am not Harry Potter, not even close. No one is trying to murder me…I think. Ok, I do have a list of people who might try. My close friends know who’s on it if anything goes down. But I can relate to having an ocean forged between myself and the people around me, making it impossible to connect. Just having a loving relationship with my parents has been enough to ensue an absolute fiery level of anger and jealousy in the people I meet. To have familial support marked me as someone special and blessed, unworthy of having pain. I had a friend yell at me until I cried and tell me that maybe I should cry. “Maybe you should feel pain, because the only pain you have ever felt in your life has been a heartbreak.”

It wasn’t the first time I had the love and happiness in my life seethed at me with hatred, as if it was wrong. At the time, I was 22 and I had lived a mostly nice life, outside of losing my first love. But, a break-up at a young age from the first person you share intimacy, love, or sex with is a loss worthy of grieving. Maybe now at 32, wandering through hell for a while has earned me the right to finally say I am a human and I can feel pain and experience grief. I know I didn’t have to “earn it.” No one should have to account for their pain, but #blessed feels a bit like a role I’ve fallen into that I can’t quite shake.

This became obvious to me when I played a card game with friends a couple years ago. We each had to choose someone else who we could trade spaces with for a day. Someone chose me and said that I was “so lucky.” At the time, I had just been diagnosed with 8 chronic conditions, a dog had attacked me, I almost died in a treatment, I was facing multiple surgeries, I could hardly get out of bed, I couldn’t eat solid foods, and I had just moved back in my parents for help. Yet, somehow the people in my life still saw me as lucky.

Once you’re up on that pedestal, you’re one of the “lucky ones.” No matter how messed up things get, people can’t really see it. Margot Robbie is a perfect example. She’s waaaay up there on that pedestal. I read that she gets migraines, and as someone who also gets migraines, I feel for her. She has to film movies in noisy, fast and bright conditions. But no one wants to hear Margot Robbie complain about a migraine. Most people have disconnected themselves too much from Margot to empathize with her. In their minds, no matter how how painful it gets, she is still better off in her multi-million dollar home, sick in silk pajamas.

I would argue that money does make it easier to get better care, but at the end of the day, we are all human. We all live. we hurt, we grieve, we smile, we cry, we poop, and we die. Even Margot.

So, all you Margots, Harrys, Rons, even the Voldys: You are allowed to grieve freely in front of the world, for everything you’ve been through, no matter how small.

Before the nunnery

After flirting for the first time in ages, I found that in the wake of years of medical trauma, isolation, and a decline in my physical and mental health, it is really disheartening to play the part of a normal girl.

It made me feel like a cleverly disguised alien attempting to fit in with humans. As if the closer I got, the more likely it was that someone would see the differences. Or maybe like one of the less feisty Disney princesses, like Snow White. How did she really feel when she woke up? Cool to have a good looking guy kiss her awake, but wasn’t she poisoned? She probably had to deal with some trauma and make sense of a world around her that felt pretty unsafe and scary. It wasn’t really the best time to meet someone, no matter how charming he was.

For many people in my age group (30s) the worst case scenario is to be alone. I’ve heard a lot of, “I’m so sorry you’re alone. I’ve got my best friend” and “oh if only you could meet someone.” Many people don’t even share their happiness with me, because “I’m alone”. As if love is the only cure to my incurable illness. I get it, love is cool. I’m not against meeting someone if it happens, but after losing basic functions, facing death in its cold, smug face and having to live with my parents as an adult (arguably scarier), being alone is absolutely not my worst case scenario. My worst case scenario is losing my autonomy and independence. I’m more scared that I won’t be able to be alone, than of being alone.

I certainly don’t want to descend into the woods and live like the artists before me, but I’m sure there are some options between finding a soulmate immediately and running to the nearest nunnery.

I just ask that if someone does kiss me awake any time soon, they give me some time to adjust to what it means to be awake in this new world.

chronic illness, robots and da vinci

For a while, it seemed like we were doomed to abandon human-made art for AI, watch our culture spiral into trends and vapid nonsense, and ultimately get murdered by our phone, car, and house robots that rise up after years of serving us.

But honestly, things aren’t really that bleak or cool, they are just changing.

Robots are making art and taking our jobs. But, one also just performed a surgery on me that went amazingly well (with the help of an incredible surgeon that was guiding it remotely). That surgery wouldn’t have been possible without the Da Vinci robot, so I’ll count it as an ally at the very least. Yes, I am an artist and I had the Da Vinci robot perform surgery on me. I met it in the operating room. It was, well, it had 4 arms and edward scissordhands and was terrifying, but I’m alive.

I have no doubt that we will teach robots how to do, probably far too much. But if there’s one thing I am sure of, it’s that it will take a very long time for robots to learn how to be awkward. They can sure be programed to try, but man there’s nothing like the real thing.

There’s nothing like some good, awkward humans on the internet. When I’m too sick to get out of bed, I can watch people make fun of absolutely everything possible and it reminds me that there is still a whole world out there of people like me. People who find the same nonsense funny. And we laugh together, even when I’m alone.

So yes, for a while there it was looking bleak, but in the past disabled and mentally ill young ladies like me would have been chucked into the sea, or burned as a witch. Possibly in a sanitarium for hysteria. Or I would have been speaking in tongues in a dark room for days on end like my great grandma, who everyone thought was possessed, but just had migraines and didn’t have medicine.

I finally have doctors who care about me and listen to me, but It took 5 years to get diagnosed and treated with the 10 chronic conditions I have because they are “invisible” and for a while no one believed anything was wrong. I had a lot of specialists and doctors accuse me of just having anxiety or bad relationships and it is so scary to feel like someone won’t help you when you need it. It is also impossible to solve a problem when you are attempting to prove its existence.

So change isn’t always bad. I want to see more of it. And nonsense isn’t always bad either. Both can be great. Chronically ill people really are sick. Robots might end up being really chill. Possessed demons deserve migraine medicine. And the people making bananas internet videos are actually really important. So keep it up. We need you. You’re a special kind of modern hero.

(P.S. If you haven’t watched “I’m your man” or “Ich bin dein Mensch” the 2021 German movie, watch now. Robots, AI, love, humor, and matthew (gone too soon) crawley from Downton Abbey. It has it all.)