Notes & musings from life...

Well… my newsletter got sidelined last week. I’ve been in the hospital since last Thursday. Not to worry, I am more or less fine. One of the things they found was a spot on my lung, which triggers a tuberculosis rule-out protocol. Like??? I suppose the threat of consumption is pretty on-brand for this girl who loves history, but I would prefer some things be left in the tomes and not be part of my waking, modern life.

So this is what happens when you have a spot on a scan like me. First, in the ER, you get wheeled into a private room. The door quickly shuts, and everyone puts on their super-heavy COVID-era masks. Each person who comes into the room looks upon you with great sympathy and pity in their eyes.

Once officially in the hospital (ambulance ride and all, with the people you encounter disgusted by your “TB rule-out diagnosis”), it’s time for copious amounts of blood work and multiple sputum tests.

Now, here are some of the hallmarks of TB:

1. Severe night sweats that soak your sheets (my night sweats come in the form of a 5-year-old who has to sleep with me and runs hot)

2. Rapid weight loss (please-oh-please may I have this symptom?? Alas!)

3. Persistent cough for three weeks or longer (nope)

4. Coughing up blood and phlegm (enter romantic, blood-stained white kerchief)

Here’s the predicament I found myself in. You need to be able to produce sputum or phlegm to give samples for them to test for tuberculosis, however I did not have this (or any of the other symptoms aside from the thing on my lung). So in essence, you have to have the thing to rule out the thing. Here we step into the catch-22, the ouroboros, the Kafka-esque nightmare.

They kept pushing a nebulizer on me to help in this process. Truthfully, any help it gave was so negligible that it seemed pointless to continue. They even continued to offer it after my sputum tests had all been submitted, as if I were having trouble breathing — you know, because of consumption.

When I find myself in the hamster wheel of anything bureaucratic, when I stop being treated as an individual person but rather a series of markers and checks and boxes, I start to lose my decorum. That friendly, jovial girl you know becomes sharp, laser-focused on maintaining my humanity in a scenario designed to erase my personhood. The logical fallacies must be named or else I will surely perish.

So here I am, trapped in a system that, under the guise of “keeping people safe,” has lost its meaning and just becomes about the system.

I complied with every reasonable request (spit into cup, draw blood, breathe through your mouth while we listen to your lungs that sound fine), submitted multiple tests, and remained cooperative throughout, yet the criteria for release kept shifting without clear explanation. I was told I posed a public health risk, while my children were given no instructions to isolate and were permitted to remain in the world.

Well, that’s not entirely true. A nurse told me the kids had to stay home. The doctor told me the kids could go to school. The doctor told me Lily could visit; when she and Mike got her, the nurse told them they were not allowed to see me. Imagine going to the hospital as a 5-year-old and being told you can’t see mommy. That’s when “Don’t F* With My Kids Elena” made her entrance.

I was having extraordinary difficulty producing sputum for a disease defined by a productive cough, yet my inability itself became grounds for continued detention. Each person deferred to policy, law, or another department. I was repeatedly reminded that protocol mattered more than the person enduring it, or any of their other symptoms (or lack thereof).

As I write this, I am still waiting on my third and final TB test result. I have two negative tests so far, but the NYS government and Department of Infectious Disease say I need three. No other assessment of my condition will do. Certainly, no one from that department will speak with me or evaluate me.

At no point do I want to be difficult. I pride myself on my pleases and thank-yous and being a gracious, model patient. The machine here is BIG. And while I understand that some of these things have been put in place for the sake of public safety, there is still room for human evaluation and assessment.

In situations that seem most difficult, I try to think about every single silver lining, and there have been many. One great thing about the TB rule-out is that you get a private room. That has made this experience more manageable. The food here is decent. My room gets great light, and I can see the arches of the Verrazzano Bridge, the Army Terminal, and parts of the NY Harbor. Mike didn’t have any schools to go to early this week and has been able to take care of the kids and our home. My dad is on the worst sabbatical of all space and time and has been spending it caring for everyone around him, so he was available to spend time with my kids when Mike was with me in the hospital. Also, I don’t feel terrible, and I have my wits about me. Lots of friends and family have reached out. God is always with me.

The first night here was scary. Do I have tuberculosis? Do I have cancer? They kept mentioning getting a biopsy of my lung, and the term “malignant” was uttered frequently. Horrifying. Thinking about Mike, Oren, and Lily, and how desperately I need to get home to them.

There were lots of tears my first night and morning here. I could barely sleep, which is hard enough in a hospital without worrying that you are actively dying. So I visualized my grandparents, my mom’s brother, and the people closest to me who have passed, standing in a circle holding hands around my bed, protecting me. Surrounding them were angels — the Renaissance kind, with wings of fiery crimson. Archangel Michael with his sword. Michael, also the name of my husband, and my beloved uncle who passed when I was a child. It was a fortifying and stabilizing exercise and helped me through the night.

I was ultimately diagnosed with a form of walking pneumonia. What a M$%@#$F#$)ING thing to do.

There are still so many unanswered questions, and symptoms that I do and do not have. It’s going to be a bit of a professional patient season for me. But the first step is just getting home.

I’ve told my family that the scenario for me to EVER go to a hospital again needs to literally be life and death. I was sucked into a bureaucratic loop, and my consent was deemed unnecessary in the name of public health protocol. By day three, the doctors were all in agreement that I should be able to go home. I don’t have this disease, and my test results said so, but they hadn’t been able to mark all of the boxes off on the state-approved paper and were giving me every justification for it. There was no human to discuss this with, only Protocol to adhere to.

Still, I sat in a private room spitting into a cup for five days. Not the worst. But not being at liberty to leave was scary.

I’ll be home soon, hopefully, and when I do I get to dive back into Folkloric. I have pieces to finish, orders to ship. But more importantly, I have a family I cannot wait to hug. We’ll save the kisses until after the course of antibiotics!

UPDATE:
I am finishing this from my sofa, surrounded by pets, hooray! I arrived home before Lily got back from school, so we were able to give her the BEST surprise. She said "Papa told me there was a surprise at home and I though it was a new toy, but it was MOMMY, and that was better. I'm not crying, you're crying! Oren came by on his way to his dad's to give me 100 welcome home hugs in rapid succession. The antibiotics are ravaging through my body, but I'm sure I'll start to feel actually better soon. I am so grateful to be home, and get back into the magical world of Folkloric. I need it.

Lily & Mommy, reunited and it feels so good.

Leffy posing with my current read, Ready Player One

Oren just finished reading Ready Player One in school and insisted that I read it while in the hospital. I haven't finished, but am absolutely enjoying it. It's nice to switch it up, instead of my normal consumption (lol) of 18th-early 20th century related content, we find ourselves in a non-so-distant dystopian future.

Ready Player One is set in 2045 and the world has become bleak, overpopulated, and economically strained. Most people escape into a vast virtual universe called the OASIS, a sprawling digital world where you can be anyone, go anywhere, and build an entirely different life. Economics are still at play, but people can assume an anonymous identity and look however they want. 

When the eccentric creator of the OASIS dies, he leaves behind a kind of elaborate, nostalgia-soaked treasure hunt hidden within the game. Whoever solves it inherits his fortune and control of the entire system. Enter Wade Watts, a teenage boy with a religious devotion to everything that the OASIS creator was interested in- specifically 1980's si-fi/fantasy pop-culture, who begins decoding the clues. What I've read so far is part quest, part love letter to retro obsession, part meditation on identity, loneliness, and the seductive comfort of living behind an avatar.

I'm only about 1/2 way through so can't tell you much more than that, but I can tell you I am enjoying it immensely! 

_{A very happy yours truly, braving the arctic tundra in pursuit of auction catalogs.}

I ended last year and started this year in a bit of a panic about source imagery. I’ll table the panic over the extraordinary rising costs of metal for another day. It seemed like I had purchased every worthwhile auction catalog The Strand had to offer, and my deep dives on eBay were turning up lemons, or the cost of the books had increased dramatically.

A couple of weekends ago, Mike, Lily, and I headed to the neighborhood of my youth, the Upper West Side, to adventure to the Children’s MuseumChildren’s Museum of Manhattan of Manhattan and Zabar’s. I had completely forgotten about Westsider Books which was right there! We popped in, and I quickly found about seven books full of imagery that screamed Folkloric.

I’ve been drawn to porcelain imagery from the 17th through 19th centuries. Think Minton, Sèvres, Wedgwood, Worcester, Meissen. I found a little jackpot in the stacks that should get me through the coming season.

The lack of books with the imagery I’m inspired by was distressing. What a relief to discover a hoard and have a new destination for my auction catalog pilgrimages. It also feels great to spend my hard-earned shekels at an independent store that I remember from being Lily’s age. The Upper West Side still maintains some of its small business charm, and I’m so happy to support it.

All 5-Star reviews are thanked with 15% off coupons!