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.

Hysteria

My guy friend was excited to announce that he’s getting the same weird medical test done that I am (again) next week. This test is a doozy. You have to have what I will describe as a reverse enema while you lay on a table, bum exposed to the room, before that table is raised up so you slide down so so slowly onto a toilet that ends its journey elevated in the center of the room so that you can go to the bathroom above the other peasants (nurses and doctor) like a king. The radiologist takes pictures of you (well, your insides) and then comes in to talk to you about it and point at a screen, while you sit Winnie-the pooh-style on your thrown. Over 10/10 strangest thing I have ever done in my life, but the only reason I was able to get a surgery that changed my life, so I’m a fan. I need the test again, because eventhough the first surgery worked, I may need another surgery to help seal the deal.

At first I laughed to myself, because my friend will soon understand what is still out of the thousands of medical experiences I have had, the weirdest one, but then I realized that he started having chronic health issues about 6 months ago and he is already having several tests done that took me between 3-5 years to get.

That test in particular took me an absolutely gut-wrenching amount of fighting, pleading, begging, and getting tossed from one doctor, surgeon, specialist, and physical therapist to the next for years to get done and it was given to him as easily as a credit card with one phone call to his doctor.

My friend talked about his fear of eating and awkwardness of social interactions with an extremely limited diet, chronic pain, isolation, and well-meaning but incompetent doctors. It was all very familiar to me. I tried to offer advice when he asked and said “I have found that I have had to go against my personality to get good care. I have to complain and really emphasize what is wrong”.

It was his response that made me realize that his experience was not familiar to me at all. He was beginning a journey that he thought was like the one I started years ago, but it was entirely different. He hasn’t had to emphasize his pain or complain. He hasn’t had to push, beg, or plead. He hasn’t had anyone wonder if he is really sick physically or question if it is just his mental health or anxiety. Or possibly just a stressful relationship causing inner turmoil.

It hasn’t been perfect, but his doctors listen to him.

And as he tried to empathize about our shared experience, I felt miles away.

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.