I went to a documentary! I’ve been in pain all weekend and haven’t had eggs since Friday. I can tell in photos now when I’m not feeling well. I always have this weird tight smile. But I was genuinely happy in that moment to be OUT OF THE HOUSE! (That’s my friend Susan behind me in the glasses - she signed up to be one of my drivers which I’m very excited about - her and I like to talk about being Sephardic - Sephardic Jews are from Spain originally).
I’ve been having to make decisions about whether I will stay home when I’ve hardly eaten and had a lot of pain. If I’m stuck at home all the time, I will have serious mental health issues. I refuse. So I got a chai right away when I arrived. I’m having a lot of dizziness and balance issues which is very worrisome. And I still went alone! Probably not the best idea but it was day time, it was close by and I knew I’d see people at the event who could help if something went seriously wrong. Calculated risk.
The dizziness is really worrying me. I also had a new symptom show up today that is bothering me. I don’t feel like sharing with the world at this time.
Oh, so one of the people I ran into at the event said she had to LEAVE SEATTLE FOR SURGERY. She went all the way to Los Angeles because she couldn’t find the right care here. What in the HELL is going on in this city? I can’t figure it out. What is it? Is each system too disjointed? Is there something just bureaucratic going on? Something from the state level that’s trickling down? Is it insurance companies - well, we know insurance companies have EVERYONE by the balls - but why are my friend and I flying south for care?
I’m contemplating trying to get to another city like Baltimore to go to Johns Hopkins but can I make the trip? Will I be able to handle being in a facility that may not have the broth or food or care that I need? Even if they have other things like special imaging equipment and experts that may be able to run tests and look at my case more carefully?
Why is the pain worse? Why am I having SO much pain without eaten eggs in 2 days. That’s new for sure. Usually if I haven’t eaten any eggs or solid food, the pain decreases (I don’t count avocado as full-on solid food - it’s more like “full liquid” which is hospital speak for things like yogurt / pudding).
If I knew this was just the deal and I had to find a way through it, I could probably manage that. But not knowing what is going on or if something is getting worse has me terrified. I get that there are super scary diagnosis out there. But man, being lost in the system and not knowing what is happening inside of me…well, I can’t remember how scared I was when they found all the masses in me, pretty damn scared - but there was a plan in place. I kept focusing on getting tasks done, wrapping up business and focused on preparing for the surgery.
Now? I don’t know what to plan for which I hate. I’m a big planner. I hate not knowing what’s up or how to tackle it. I hate feeling trapped. I hate feeling at the mercy of doctors and people with power to decide if I live or die. That’s a really tough one. I hate that. I worked SO hard all these years to make sure I wasn’t a helpless little female in the world. I paid my dues. Got my degree. Worked my ass off. I was careful about my romantic liaisons so that I would have the respect of men. I cultivated tons of contacts. Damn damn damn. I worked so fucking hard all these years to NOT be in this situation.
I wanted to make my OWN way in the world. I was born the year before Title IX passed.
In this country…2019, it doesn’t seem to matter if I’ve worked hard or paid into the tax system for 30 years. I’m a dependent disabled person in the United States of America and we are not well taken care of here. My therapist is from the Netherlands and she said if I lived there, I’d get an apartment - nothing fancy - but still my own and I’d be taken care of by the state.
Here, the government has been actively trying to throw millions of people off healthcare, thereby killing the medically fragile.
Add in being a woman and a Jew?
The generational trauma of living with the history of persecution and torturing of Jews. The film reviewed what they did to the Jews who would not renounce being Jewish, or rat out secret Jews. They’d literally torture them on the rack, through waterboarding or hang them by their shoulders, dislocating them. Most people broke pretty soon.
But there was one woman - I want to say her name was Bianca Dias - but I’m not finding it on Google. Will need to ask the filmmaker. She was in the Inquisition prison for TWO years! They kept torturing her over and over. Her mother and sister were the people who told on her secretly practicing Judaism. They eventually let her go and she took OFF to Brazil where she raised her daughters.
I realize we are far, far from an Inquisition! That’s not the point. The point is that as a Jewish person, I have this history, generational trauma, and an innate fear of something bad happening to me and my family.
There were two young people there with their very small kids. I think the mom was pregnant, and the two kids were like 3 and 5 years old. They were listening to the whole section of the movie about the Holocaust. I also don’t remember specifically learning about the Holocaust. It was always just there, in the background, something we knew happened. And promised would never happen again.
Let’s just say I’ve never really trusted government! And now…? No trust at all.
I hope this pain passes. I really want some eggs.
I’m going to go visit with my family now. My little brother is somehow 45! I thought he was 43 this year. I had a whole discussion with my parents about how old he is. I later texted him and was like I was debating with mom and dad about how old you are! I can’t believe you’re 44. He writes back right away: Jules I’m 45. I’m like whaaaa?