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.

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.)