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.

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.)