Context

While I was still half asleep the other morning, I started to daydream about being a wife and a mother. This fantasy felt very natural and powerful. Everything was up to me. I said “yes”. I took the ring. I took someone into me and I created a baby. I grew a baby, like it was the earth and I was the sun.

As I woke up again to the reality of this body that will never be a sun, I realized that it wasn’t a child or a husband that I was craving, it was context.

I feel adrift in the most foreign and unusual way, like an alien that isn’t even welcome on its own planet. Context was the tie that unraveled from my life 6 years ago, when a series of events all unfolded at once.

First, I got sick and I never got better. Then, I found out my boyfriend had bought a ring and wanted to get married and have a baby. At the time, he was the love of my life, but after nearly 10 years, we broke up. Since I honestly thought I was dying, but there was no name for what was wrong, everything fell apart. After that, 3 of my closest friends all got pregnant within 3 weeks of each other and another got married within 6 months of that. When I found a new boyfriend, I felt like I was on solid ground again. Even if it was too soon to be dating and he was struggling with addiction, he was kind and supportive. I didn’t have to pretend not to be sick when I was with him. He just pulled me in close and held me. He was like the eye of the storm. He also represented a normalcy I couldn’t reach when I was alone. With a boyfriend, I could at least pretend that I was on the same path as my friends. When I lost him, I also lost my job and I had to move back in with my parents. And more friends got married, moved in with boyfriends, got pregnant and started school. It was at this time that the pandemic started and I got a name for what was wrong with me, but I also got sicker and had to get treatments, injections, and surgeries.

Now, I am sitting in a college cafe, trying to drift back into memories for a moment, because it was so easy to be in school. And it would be easy to start a new job, get married or start a family too. Because it puts life into context. My life has been cracked open, so I have no edges and I can just fall endlessly into space. Without context, what is a life?

Grey is not my favorite color

I have always been someone who imagined the worse case scenario. Maybe I can chalk it up to OCD, maybe I have an overactive imagination, or maybe I’m just a worrier who wants to protect myself.

Whatever it is, I could have never prepared myself for this. I imagined a lot of dark paths, but this one is grey and endless. It isn’t enough for me to stop and rest and I don’t have the option to quit. When it feels like torture to exist physically and mentally, I wish for death. Then my instincts kick in and I go back to fearing it. It’s a strange and haunting dance and I don’t want death to be my dance partner anymore.

For the optimists out there, I’m still with you. I do believe it’s always better to look on the bright side. There is no reason to give up. It serves no purpose to throw our hands up at life saying, “we will die anyway” because, well for that exact reason. We will die anyway, so what’s the point in giving up?

But for anyone who has been pummeled over and over with anything in life, it isn’t mind over matter. It isn’t about being strong enough to deal with it or about pushing through. Sometimes, grief, trauma, physical, mental, or emotional pain are too much to handle and a simple defense mechanism against the ongoing pain is to get depressed and to feel numb.

One in three people in the world is living with multiple chronic illnesses today, so I know there are people out there who understand this battle just to exist. When all the simple, mindless tasks become complicated and painful, life becomes more complicated and painful. For those with more intense physical disabilities this becomes even more true.

It is very hard to find the sun in this endless night. I know it’s still there, but I can’t see it. I can’t feel its warmth and I am losing faith that it will swing back around to greet me.

Samantha Jones

I recently read an interesting quote by Kim Cattrall. She spoke out about Samantha Jones’s cancer plot in the Sex and the city script. She was against it, because she said it perpetuated the idea that women who are comfortable and free with their sexuality must in some way be punished for it.

If you haven’t watched the show, the character Samantha Jones is basically the female version of a playboy and later in the show, she is diagnosed with breast cancer.

When I was young, I only had crushes on safe, unavailable guys. I was a gangly, nerdy girl with braces and glasses, so it was easy to blend into the background. But when I traded my glasses for contacts, lost the braces, and transformed into a young woman with hips and boobs, suddenly I wasn’t invisible to the unavailable people I had quietly adored. This attention was exciting, scary, and dangerous. I didn’t understand what it meant, but it felt like it was my fault and entirely in my control. I was forced into an impossible puzzle, where I couldn’t feel empowered, safe, and free at the same time. I had to choose.

I made a lot of mistakes after that, and when I got sick, I was convinced that I was being punished for them. This mindset is not something I got out of thin air, it is some Scarlett letter bullshit that is still very loud in our society. If a woman is hit on, whether she wants it or not, it’s something that she brought on, like a siren, voodoo witch temptress luring in helpless men.

I was put in the position to field advances by almost every single man that I trusted in my life, including every close friend of my boyfriend and partner of my friends. And if I didn’t, I had to take on the shame for what did and didn’t happen. And I had to lose friends and gain a reputation, while the men lost nothing. So, for a while, it made sense to me that I would be the only one who got sick. Because my actions, and even just my existence, was the only part of this equation being called into question.

When I read that quote by Kim Cattrall, it all clicked. I am not being punished, I am just sick. We exist in this complex system of bacteria, plants, animals, and people. 1/3 of the world’s population have multiple chronic illnesses and they aren’t all demon spawn getting punished for something they did. And the other 2/3 are not angels. The way we fit into this puzzle is something none of us actually understand, even if we long to.

There are people out there who think that I got what I deserve, but I don’t want to be one of them anymore. I create artwork so I can celebrate my disabled body and empower it again, so I refuse to believe it is to blame. I am working too hard to love it. I want to be Samantha. Samantha was free and uninhibited. Samantha was powerful and confident. And Samantha owned her mistakes, because that is such an important part of being truly free.

Yes Samantha Jones is fictional, but the mentality of being an empowered, safe and free woman should be alive and well. If we don’t believe that it can exist, it never will.

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.

Death, taxes and scars

It’s not quite summer, but it’s the first time that it’s been hot enough to swim since last summer, so it feels like we finally made it full circle back to that lovely time full of fireworks, apple pie, hotdogs and all the other things I don’t like.

The summer has always come with too much pressure. The nice weather guilted me out when I was sick or tired. The sun loomed over my depression like an unwelcome light flipped on while I was trying to sleep. I tried to read through the beach volleyball and taco tuesdays, but a quiet sadness filled those hot nights.

My friend invited me to swim in the ocean recently. Even though I felt like absolute garbage mentally and physically, I decided to surprise myself, say yes, and put my strange alien body into a filthy body of water. After all, this was the first week of my exposure therapy for OCD. I might as well just go for it. Everything is dangerous and horrifying and amazing and it could make me sick all over again, or kill me, or it could flip my light on and wake me the fuck up.

And this glorious yes was followed by a slow sip of tea, the removal of my hand cast and a gentle application of some shimmering, coconut sun-screen that lifted my mood.

It was pretty boring.

Then I put on a swimsuit and stared all my scars down for too long. Way too long. I don’t know what the right move would have been, but this was the wrong one. I had been so sure of them. I had seen them every day for a year and yet, somehow, with the coconut in the air and the swimsuit framing them, they became menacing and out of place. I lingered on them, until I grew restless and changed into a different swimsuit. A different one. A sports bra and boxers. Then shorts.

I thought if I could just find the right one, I could win this chess game, but the scars were always one move ahead. I almost crawled back into bed, but I pulled on a dress, stuffed a swimsuit into my bag and forced myself out the door.

Until last year, I had no physical evidence of my pain or illness. In some ways, this was nice, because I was in control of what I wanted to share with people about my health, but it was also exhausting because it meant that no one could see my suffering, and they had to take me at my word.

When I got my first surgery last year, it was such a relief to finally have what I was feeling become visible. I saw physical scars appear on my body for the first time and I knew I would always have physical evidence marking me as different, so I could never blend in again.

It wasn’t until I was thrusting reject swimsuits at the floor that it really hit me. I didn’t realize how painful it would be to always be reminded of my pain and to never be able to get back to before. And to take this strange new body to the beach. This didn’t seem like a body that should have been going to that silky, clear-blue water, with the red sun falling slowly into it. It looked like it should have been going back to the hospital; like it belonged to that medical space now, in the hands of a doctor, running tests.

But I will be getting more surgeries soon and more scars, so this scarred body will be my only body. I will carry it with me to weddings, art exhibitions and the ocean to swim, not just the hospital and the doctor. So like death and taxes, this body and these scars will be the only truth I know. All I can do is love them all. The only alternative is living in a world without feeling that cool salt water press against my skin and I don’t want to know that world. Maybe next time I’ll skip the suit. I’m pretty sure that was the real problem.

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.)