Under Water

When life brings you floods, you gotta squeeze hard

May 10, 2024

Dearest reader,

thank you for taking the time to read my newsletter!

I am exhausted. Again. My whole body hurts.

Sunday, May 12, is ME/CFS Awareness Day. If you know someone with ME, Long Covid, or other chronic diseases, consider participating in a local protest, donating, or simply helping to spread awareness. 🩵🩵🩵

Also, reach out to the people you know with these debilitating chronic illnesses. Just letting them know that you’re thinking about them is particularly valuable, seeing as we tend to live quite isolated lives. 🩵🩵🩵

#GOBLUEforMECFS

Thank you for reading Yvonne’s Substack. This post is public so feel free to share it.

What I expected to be a chill week - yesterday, Thursday, was a bank holiday in Austria - evolved into quite the opposite at the beginning of the week.

Family celebration & sleepovers

But first, some of the good stuff: Over the weekend, my family celebrated my niece’s birthday (family celebration - yay! warm brownies with vanilla ice cream and fresh strawberries - double yay!). And from Saturday to Sunday, my nephew had his first solo sleepover at my place. He was super excited and I followed his lead of making the best of each moment: playing pirates on the playground; getting pizza for an early dinner with our pyjamas already on; board games at night and again first thing in the morning; and the Lego movie.

Now, I live in a studio apartment with two young cats, so I knew ahead of time that the actual “sleep” part of the sleepover would be tricky. I was right. My nephew (6) went to sleep around the same time I did, which is a lot later than usual. Then, the cats had their first little spat in the early morning hours - I think it was around 5 am - and disregarding his sleeping body on the pull-out couch, he woke up with a scream. I calmed him down, we swapped places to get him out of potential harm’s way, and we tried to go back to sleep. Nice try, lol.

He was wide awake because “it’s already light out” and so I asked him to play a bit by himself so I could rest a little more before breakfast. It would have been too exhausting for me to get up right so. [These are some of the most hearbreaking moments, living with chronic illness. When I cannot show up fully for loved ones, especially my nieces and nephew.] A little bit later, we had a lovely breakfast, time for more games and some selfies, before packing up his stuff and getting him back home to his sister and her birthday celebration.

Monday morning I struggled to get up. The weekend - the sleepover and the ensuing celebration (though both lovely) - had taken its toll, something I anticipated. I had no plans that day, so I took it easy and rested a lot; there was leftover pizza so I did not have to cook, and the humid (aka exhausting) weather came to an end in the late afternoon with a torrential downpour and some hail. Mesmerizing to watch from the safety of my balcony.

However, on Tuesday morning came the rude awakening in the form of a text from my neighbor and an e-mail from building management: the basement was under water. At some point during the night, there must have been a technical malfunction or something got clogged (the exact source of the flooding has not been revealed yet) which led to flooding in some of the underground areas of the building.

That morning, I had an even harder time getting out of bed and functioning. After I had seen the messages, I knew that there was no point in checking things out before I at least had my breakfast. The elevator had stopped working, too, and by the time I reached the ground floor, I saw the first signs of the aftermath of the downpour. The further down I went - I have a small cellar compartment on the second floor underground - the more water I encountered.

Some people were already working on fixing the problem and pumping out the water. Still, when I opened my compartment, the water was still a few centimeteres high (about 1.5-2 inches) and everything was soaked. Now what’s a chronically-ill person to do in that situation? Knowing that I would not be able to fix anything quickly and with the little energy I had, I had to prioritize: First, I checked the cardboard boxes on the floor and immediately started discarding stuff that was unsalvageable. Second, MacGyver-style I built some “shelves” out of boxes and a suitcase that were not made out of cardboard to store items I did not want to get soaked.

I am unsure how much time I spent rummaging around and sorting through things, but by the time I left, I was sweaty, could feel a headache coming on, and dragged a big pile of soggy (former) boxes and bags as well as wet clothes upstairs. To dump the trash and wash my clothes. Exhaustion ensued and I canceled all appointments I had the next day.

That day, I was done, having already gone slightly over my baseline. Wanting to avoid a complete crash, I sent out the bat signal to my friends, asking for help the following day to clear out the rest of my cellar compartment - for all of my things to be safe, to be able to dry, and for building management to clean up the whole mess. Within an hour, several friends had replied and offered their time and energy. I was elated and had a little cry about it. Partly, because of my exhaustion and this new problem that I had to deal with and dedicate the majority of my energy and attention of the week to. And partly because it was difficult for me asking for help in the first place.

Asking for help has been one of the major lessons my set of chronic conditions has been teaching me. After a life of (hyper)independence, I am no longer able to, nor can I afford to, not ask for help. While I’ve always been the first to jump in to assist someone, reversing these roles does not come easy to me. When life gives you flooding, you need friends who don’t mind getting dirty with and for you and scold you when you do a bad job at delegating tasks (guilty!).

My balcony is home to a lot of things at the moment…

In the end, with two friends by my side, we cleared out the rest of my stuff in less than 30 minutes. That allowed for plenty of time to have some home-made rhubarb muffins while catching up after crossing that tedious, anxiety-inducing task off my to-do list. My cats were, of course, delighted to have new items to sniff out and climb around on. Now, my balcony is filled with backpacks, a suitcase and boxes, little trinkets, and some books that drowned. Most things are safe and drying. Some others will have to go. (The books I had in the basement are some I had been meaning to give away or donate anyway, so the important ones are safe!)

Through this whole ordeal, the question of what I want and need to have in my life vs. what I can toss has re-emerged. While I don’t have the energy yet - it’ll take a few more days before I’ll be back to my kind of normal again -, this sign from the heavens has got me thinking. I know that I have a hard time letting go of some things because I simply hate being wasteful of resources. But, there are still areas in my apartment that beg to be decluttered, first and foremost my closet. I have written about the my difficulties with weight loss due to Long Covid; yet so far, I have been holding on to most of my clothes that no longer fit. It might be time to bid farewell to a few more items that - literally - no longer fit in my life.

What I’ve been reading and watching

Over the last week, I have been reading James Baldwin’s first novel Go Tell it on the Mountain (1953). A year or so ago, I bought a used copy and I loved reading the text with the previous reader’s notes and annotations (though they didn’t always make sense to me). It was a tough read, and yet I could not put it down. It is the story of John, a young Black boy living in Harlem with his family, and over the course of one mass in church (his father is a preacher), the reader learns about the father’s, mother’s, and John’s histories. The novel is heavily influenced by Baldwin’s own (very similar) upbringing and is thus loaded with biblical references and religious ideas and what it means to be raised in an environment where pretty much everything is sinful.

Having grown up Roman Catholic, I am familiar with the bible stories and quotes. However, reading the novel, I also realized that in comparison, the church and priest of my childhood were quite “chill”. The focus was never as much on sin and damnation, but rather on love and the idea that it’s never too late to do good and live a good (Christian) life. At the same time, some of the same (religious) arguments that Baldwin incorporated into his story are still being used today in the US, especially in recent ultra-conservative discussions about the perceived “ideology” of “wokeness”.

Which brings me to a video that I loved: this week’s story about public libraries on Last Week Tonight with John Oliver. I recommend you watch it 🤓