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?

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.

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.