I want a new job 4.1.19

I need to find paperwork on my disability benefits for a phone meeting with a friend who is making sure I’m getting all the benefits available to me. this is just one stack of my medical paperwork. Fun times!

I need to find paperwork on my disability benefits for a phone meeting with a friend who is making sure I’m getting all the benefits available to me. this is just one stack of my medical paperwork. Fun times!

It’s been rough times around here so I gave myself a week off from the Internet. Sharing content is both rewarding and draining. When people act superior because they aren’t on social media, I inwardly cringe now.

How lucky for you that you don’t depend on social media for support and company while being home-bound!

How lucky for you that you don’t depend on social media for life-saving advice and doctor referrals!

How lucky for you that you’re able to work in the real world and not desperately finding ways to generate income from your bedroom and bathroom!

The longer this continues, the further away the able-bodied world feels. And on top of that, I’m living in the bubble of all bubbles and then another bubble again.

Fortunately, people younger than me tend to pick this shit up super quickly. Older? Hmmm…..something happens around 50 years old. That’s my new theory. People tend to lock into whatever their belief systems are. Not everyone, of course. And thankfully, there are a lot of open-minded peeps in that demographic. But the rest….? I get that times are scary and people tend to close in ranks, but man. If I shared ALL the shit I’m dealing with here, well, it would be an excellent place to come for a good cry!

A lot has been happening in the Negrin clan. Not great news about a family member. Also, teen stuff. Dang, mad props to everyone raising kids. So stressful! Why doesn’t anyone talk about the stress? I’m not even a freaking parent and I’m stressed out. My friend pointed out that kids are physically draining when they are young, but emotionally stressful when they are big.

So. True.

That will work itself out.

Trying to keep everyone alive in this family is more than a full-time job and I’d like a new company position.

The amount of work that goes into just getting through the day is maddening. So much of the physical and mental stress is heavy - and then on top of that, just trying to get through to doctors and get to the right people at the right time….

And I consider myself pretty good at this! I started working in a law firm when I was only 17 years old. I was still in high school! I’d take the bus downtown three days a week and worked on an actual typewriter. Haha, that makes me feel so old. I doubt these kids even know what a typewriter is! People wonder why I type so fast and I’m like three years of typing in high school ON AN ACTUAL TYPEWRITER. You couldn’t easily backspace like on a computer and fix mistakes so you had to improve or end up with a zillion mistakes. We had something called “perfect lines” - you had to get three lines in a row without any mistakes (how do I remember this shit?).

Why am I writing about typewriters? Oh yes, administrative BULLSHIT. Anyway, I’m kind of an admin queen. Never bothered me, came easily which helped when I worked for myself.

Now? OMG. Paperwork, filing, spreadsheets, all of it overwhelms me. It’s so strange to lose skills that used to come so easily. I try to tell myself that this will allow the artist to come through. I also remind myself how fucking lucky I am that my cognitive function is doing as well as it is.

I do need to make an appointment with a neurologist. I’ve never seen one this entire time. But I’m concerned about losing my balance now. I’m also worried about the aphasia - which is when you can’t find words (had to google that, of course but I do remember that there IS a name from grad school so there’s hope for this brain!). That’s one thing I definitely took for granted. I see why staying physically strong has helped my dad so much. It’s so important when things are going hay-wire on the inside. My strength has kept me from literally falling over and…who knows what would happen if I fell getting out of the bath. This worries me a lot.

The truth is: I don’t feel like being on the Internet these days. Like so many people, I’m disgusted with the Facebook company. I’m appalled at the behavior of humans on the Internet. I hear of friends who have money who have left the country and I’m so jealous. If I could, I’d get off the grid and live in a little village somewhere and speak Spanish.

I don’t get that option. I do realize that I could find easier ways out of this hell-hole. But a big part of me feels like I need to KNOW what people are going through in this country. If I don’t go through it and report back to the people at the top of the social hierarchy, then WHO WILL????? It’s not right! It’s NOT RIGHT. If I’m struggling with this paperwork along with my mom - we both have decades of paper pushing experience, my mom does the accounting at my parent’s business - then how do other people deal with this?

On top of everything else, a dear friend just got a cancer diagnosis. She’ll be all right. But daaaaang.

Sometimes people feel bad telling me their problems or their medical cases or whatever.

I just stare at them and I’m like dude. I RESIDE in Hell. That’s where my home is. Sometimes demons and I share a joint. They’re not so bad once you get to know them.

Bring on the heavy shit!

Sometimes it feels easier to talk about heavy shit than it does superficial shit. I definitely don’t feel like hearing about someone’s 43rd vacation this year. I’ll tell ya that much.

It’s like: do you talk about your marathon to someone who just lost their legs? Read the room, Ables. Read the room.

Part of the reason I didn’t write here last week was because I was super focused on my case. I had Sarah - my grad school helper - come twice and we plowed through my to-do list. It’s so much easier when she is helping! I think a few people on my volunteer sheet said they can help too. It’s just a process to get THAT organized. Need to get organized so I can get organized. Btw, it’s so nice having so much help and drivers and people chipping in now. It’s AMAZING.

I think people don’t realize is that when my dad is sick, I lose that additional body in the house helping out with tasks like washing the dishtowels, getting things from Costco. Little stuff like that and big stuff too. I also pitch in to help HIM when he is sick. I already try to keep as much off my parent’s plate as possible because they have their own shit to worry about. But when one of us is down, it throws the whole system off.

Wasn’t technology supposed to make our lives easier? Wasn’t the point of not spending all day washing our clothes and harvesting our food so that we would have more leisure time?

It feels like everyone I know is strained to the max. Thankfully, I have people who are stepping up.

It’s so fascinating to me who shows up in times of crisis. And who steps back slowly, eyes wide, unsure when they can turn and start running in the opposite direction.

I’m so fucking grateful for the people who show up. I get that my life is hard and heavy. I totally get it. I’ll go back to the analogy of swimming in the ocean. STILL, never reaching land for FIVE YEARS. My fingers are pruned beyond recognition. My legs are so tired of treading water, my arms feel like lead.

And yet still, some beautiful souls hang on to me when I can’t possibly swim anymore and need to hold onto the side of their boat to catch my breath.

If I don’t keep swimming, then I’ll eventually drown. I have to at least SWIM toward land. Whether I reach it in time…remains to be seen. But I have to try. I take a few deep breaths, let go of their boats and continue on. Some people I would never think in a million years are rowing their boats away. Others - also people I wouldn’t have thought would stick around - keep rowing next to me, hollering you can do it, Julie! Keep at it!

I saw some people this weekend and I got some wonderful hugs. I need those hugs. I just had the second 9 year old nephew decide he doesn’t want to snuggle as much anymore. I’ve been raising boys for…shit forty years but it never gets any easier when they hit that age when they start rationing kisses and hugs. Feels different with the girls. We can share a hotel bed when they are adults. But the boys, I have to let go of….Their job is to grow up and I want them as healthy as possible so of course, I respect their boundaries.

Still stings though. Even when I’m prepared for it.

I’m overwhelmed with how many messages are in messenger. I’m overwhelmed at the idea of starting to post again. I’m overwhelmed with all these spreadsheets and assigning tasks to volunteers. A big part of me wants to just get offline for awhile. But I need doctor referrals. I NEED social media to survive. How’s that for a twist in the age of technology?

I really should go and get some SHIT DONE. But there are still words that want OUT.

I’ve been thinking about that Bonnie and Clyde movie on Netflix - as an aside, the Patriarchy should take note of the fact that Netflix scored Costner and Harrelson. Buh BYE sexist / racist movie studios! We got some powerful old white guys moving to our team!

There is a scene where the father of Clyde said that he stole a chicken when he was young. I knew it was going to become about class and waited anxiously to see how it would play out. Class is so rarely discussed in America and American media. Eeks talking about money and class is so gauche! Said the rich white people.

(When people say “I never think about it…” well, yeah you don’t when you’re at the TOP! Us little monkeys in the trees need to know where the cheetahs are at all time. The cheetah doesn’t ever think about US. I’m getting less and less inclined to keep my mouth shut about this topic. DONE. Been studying the cheetahs for years. They don’t even understand what’s about to hit them. If I was in a different mood, I might feel sorry for them. Because I feel sorry for people a lot. Right now? Not feeling that so much for them. I gave them 2.5 years and lots and lots of gentle nudges. Wake up! Geez what does it TAKE?)

Costner’s character, of course, asked: why did he steal the chicken? The father looks exasperated and said: probably because he was hungry!

Then he railed that from that day on, the law treated him like he was a criminal. That it changed him.

I also think about the show Good Girls. How these three women are doing the best they can to make it in a world rigged against them. And how they eventually turn to crime because what choice do they have?

The system. Once you’re in this system, everything changes. I’m obviously not incarcerated! But I’m in the government system now. And let me tell ya: IT SUCKS BALLS. I think about how much harder I’ve had to become, just to survive.

These fuckers at the very top of the social hierarchy can do whatever crimes THEY want even if it’s illegal and morally corrupt.

But steal a chicken? Steal money to cover a dying daughter’s medical treatment like on Good Girls?

This country is FUCKED UP.

I have to keep fighting.

If for no other reason, than to wake people up to how the poor and marginalized and the abused and the disabled are treated like COMPLETE SHIT. Garbage. I feel like this country treats me like garbage now that I’m in this position. It’s shocking how a few people from my past view ME as some lifestyle blogger that might steal a piece of their pie. I’m like OMG we are not in the same position people!!

I didn’t even know what I was preparing for all these years. I kept my head down, did my work, kept my ties loose and my name clean.

So that I could say whatever needs to be said. But I never imagined it would be like this. I thought I’d take on some medical corruption. Call out food companies for poisoning the earth and humans.

Politics? Earth dying? Global war brewing? No way. Never crossed my mind.

It’s appalling how many people are more afraid of losing their social standing than anything else. Maybe even more than their money. They’ll cling to both before they’ll step forward and say: “I will help. I will help un-do the system that I benefit from because it’s the right thing to do. And I’d also like my children to have clean drinking water in 20 years (10? 5?) because maybe something will happen to MY family and we won’t have a pile of money to BUY water. And it’s the right thing to do!” (Does this seriously not cross their minds??)

Seasoned politicians know that going up against an opponent with nothing to lose should be avoided at all costs. You can’t win a game of chicken against somebody who will drive faster and harder than someone with a lot to lose.

Abusers and defenders. That’s how I look at the world now. Don’t care about political ideology or policies or whatever the fuck.

It’s are you an abuser/bully or enabler of them? Or do you stand with the abused/marginalized?

It’s a simple choice. And the most complicated one many people are about to make.

Time to pick a side, America.

I will admit. I am looking forward to going on offense after so many years of being on defense. But it is scary. Ok, terrifying.

It’s time. I’m not looking forward to the work. Or the stress. Or the trolls. I’m old. I’m tired. I want to grow vegetables in a garden and juice them while watching the butterflies pass by.

Maybe one day.

These cocky fuckers in DC. I guess that will be the fun part. As if. As if I’d keep my mouth shut and wave to all the people at the top while I slowly die.


For now. I keep myself alive. I should go call hospitals around the country.

Seattle isn’t cutting it. Oh Seattle….

But that will be for another day.

Much love,