Pity Party

Sort of like a tea party.

Written Sunday evening 12/10/2023. CW: Descriptions of illness and microbes.

My timing is crass. I’ll start with that. I’m aware of it. And yet the soft animal of a body that Mary Oliver wishes for me has its own agenda. She (my insides) and I are not getting along. She writhes. I continue to eat vegetables and do my dishes.

I’m hosting a pity party: tonight, in my room, which I have freshly vacuumed in an attempt to distract myself from the state of my insides. You may wonder, is the ailment physical or emotional? The answer is YES. So I am having a pity party and everyone is invited. I hereby summon all the woes to the table, to stop fighting each other, to please give it a rest kids for one minute so mommy can write to her representatives!

You may know that in humorous moments I refer to my parasites as my children. After all they do gestate inside me, no mere 9 months, but many many years. They’ve taught me a lot, my microscopic little ones. Namely that there is no I, or me. This body is a we. All bodies are “we.”

In lighter moments, I refer to my body as the Wild West. The law is whoever is in charge. With the help of many capsules daily, I am regaining representation in the town meetings of my insides. I have made enormous progress. She used to be overrun with bandit cowboys and hordes of fur trappers. (Those are metaphors for invasive microbes). But, some gentler creatures and I are establishing a different kind of law, one where my mitochondria produce enough fuel, where my cell walls don’t leach, and where the furry mania of fungus doesn’t occupy the full length of my digestive tract. Hey! Share the road!

I do well. I stay positive. I have really made incredible headway, much in thanks to the kindness, support, gifts, and understanding of my community and family. I build a delicate balance of jobs, medications, sleep, food, some time with friends, some creative projects when I can. But I recently left my job, and tried a new job. And the new job - while I loved it - began to make me sick. And that threw me. I fell way off the horse (another cowboy metaphor). While others in the world lose their homes and loved ones, I have temporarily lost a source of income and it has somehow upended my world tonight. The structures I’ve built so meticulously have proven flimsy. It barely took a huff and a puff.

So, forgive me world but I need a pity party. And I am inviting:

• 14 pills in the morning, 13 pills in the afternoon, 9 pills after dinner, and 2 before bed. Every day for years. Yes they make me gassy.

• $60 a month in EBT support. (That’s food stamps, cuties). For comparison, I recently bought ingredients for chili and breakfast this week plus a bag of almonds for $85.

• The feud between my muscles and my stomach. Can they get along one day?

• My inability to work enough to support myself, followed by…

• This juggling act of job, money, medicine, health, energy to work a job. One of those pieces shifts and it ripples through all of them. For good and for worse.

I’d like to say one more thing. It’s my reminder lately. Just because you can’t imagine it, doesn’t mean isn’t possible. Having been with undiagnosed Lyme since age 6, I do not remember a time of good health. I do not remember a time when money was not a worry. But that does not mean it can’t be different.

I wish for a life that allows me to donate to other Go-Fund-Me’s and attend protests and make choices about which brand is better for the environment. I wish for a body that gives me clear signals, that doesn’t break down after exertion, and that feels like it’s mine. I wish for a brain that remembers the stories my friends have told me and the experiences we had together, and for the swathes of my childhood, teens, and twenties currently inked out, to reveal themselves.

Here’s another thing, this is my pity party. I’m the one doing the pitying. I don’t want anyone else’s pity. Tonight, I have enough to go around. When I describe my symptoms, people often interpret them as ruining all my fun. But that isn’t necessarily true. I am in my era of - this AND that. My favorite memories this year have been accompanied by waves of pain and nausea. For the first time in my life, I have been learning how to ride those waves. To be there with my whole self. That’s new for me, and it’s really good.

I quit my admin job recently because my eyeballs couldn’t take all the screen-time. They wept, watered, and twitched. I got a new job on a farm - something completely different. And that job gave me a hacking cough. And I have to quit now. And that has got me so overwhelmed. I am not fighting or flighting, I am frozen. I am stuck.

And I will find a way through. I will. But tonight I needed to take stock of the things that have been applying real pressure, to shed my bags and show you what is inside them. I reached a breaking point and had to stop. I don’t ask for pity and I am ok for funds this month. I am just having trouble picturing a different way of being right now. But, as before, just because I can’t imagine it doesn’t mean it can’t come true.

Last night I dreamed anxiously, of sharing a single bedroom with six people, of triple bunk-beds collapsing, and of the friend I was supposed to have dinner with, getting down on his knees and barking at the neighbors. I fled that world on a bicycle. I rode along a thin, cobalt river until I reached a warehouse. I paid a man in coins and potato chips to store my bike. I kept following the river until the road became marshland. Mansions out of Edward Gory loomed on the right-side riverbank while people in fine clothes dined in boats. I crept all the way to the last house, and the grasses melted into the river under my feet. I turned right around; it was all too spooky. As I retraced my steps and reached the first of the mansions, an orange peacock dove toward me. I threw my arms up for protection. She landed and turned into a beautiful woman. She told me that I would be protected now. She said she knew my name, so I could always come back and visit her - she would remember me. We said goodbye. The warehouse was packed and the man had lost my bike. Upon my offer of more potato chips, he let me search along the rows for my bike. It took a while. Sienna Miller was there. Under piles of fiberglass insulation, I found my bike, and headed home.

And I don’t know what any of that means, except maybe that my imagination in sleep stretches far beyond my daydreams.

Thank you, for sticking with me. For coming to my pity party. For making some wishes about what might possibly be someday.