Let’s start with the good news. I got my $15 food benefits reinstated! Wahoo! Now I just need to finish collecting a million receipts to get back up to $200. I guess the fact that I had a good career before and now get the highest tier disability benefits from the federal government means I can live on the check from them, and only need $15 for food from the state.
When she asked if I was currently employed, tears came to my eyes as I replied: no, not at this time.
Her next question: are you currently disabled?
Yes, I said, the tears now streaming down my face.
If they can beat me down, tough and feisty and determined Julie Negrin, then who the hell can survive this system?
It’s all wrong, on so many levels.
I’m still reeling from the realization that sharing that I’m struggling to continue fighting the fight drives so many people away.
The angels who stay…well, they are definitely special human beings.
I feel like I’ve put the scarlet D on my own body and people whisper as I walk by. That’s not really happening, of course. But there is a real problem with how we are handling suicide in this country.
I think some in my inner orbit have now dubbed me as “unstable.”
Well, yes, I think I’ve been quite open about feeling unstable! That isn’t a reason to ignore a person who is going through a hard time.
So much fear.
Of the wrong things.
I don’t even know what to write today and by now, it’s pretty clear that I rarely run out of words to say.
I’m just so tired of it all. I have no idea how or if I can handle bad news from the colonoscopy. I’m going to tell him that if there are any tiny polyps, to remove as much tissue as he possibly can to see if they can get clean margins during the procedure.
Clean margins, of course, is only if those polyps end up having any cancer in them.
They’ll want to remove all of it if there is any cancer in there.
I’m not going to let them.
I know that’s not going to be easy for people to hear but I don’t trust them to get it right. I’d rather take my chances and use some alternative means.
The chances of coming out of it more crippled than I already am is too risky.
I never heard back from that surgeon’s office to have an appointment and the nice doctor has said nothing about it.
Nobody wants to cut into me anyway.
Why would they?
There is so much damage in there already.
I’m starting to lose my mind on this current diet. It’s not enough. I can feel my body breaking down.
I remember when the worst of it started. I was laying on the acupuncturist table - the one I’ve * only * known for about 10 years. I’ve been going to my other one for over 25 years.
I was face down and I felt something inside me…shift? It was like a cur-glunk feeling, something just said: nope. In my gut.
That was in the fall of 2016 when I lost the sweet potatoes.
I remember thinking: this is what dying feels like.
Run away! Run away from the hungry sad scared lonely lady! Shoo!!! As the people around me start to wake up to how bad it really is.
Call me a victim! That will help things FOR SURE. Yeah, that’s super motivating.
One friend said that that’s what abusers call others as a means to gaslighting. It’s never ok for an able-bodied to call a disabled - or any other marginalized person - a victim. It’s never ok when someone further up on the food chain calls someone lower on the food chain a victim.
It’s like holding someone down while punching them, and saying: why are you so upset that I’m punching you. Stop complaining about being punched the face! Smack.
So much pretending in this culture. Too much pretending.
I’m having one of my drivers take me to the colonoscopy. I didn’t even bother asking anyone else in my family.
As the deficiencies pile up, I wait on my appointment with the registered dietitian. I’m not surprised to hear my blood sugar is so low. I’m trying so hard to sip something all day long - not water obviously because that doesn’t have any sugar or salt - and it’s not working.
If I go onto TPN, my years may be shortened by the crappy nutrition and/or a bum liver. I’d have to get a port. You can do TPN for a little while in a PICC line, but long-term, it’s likely to get infected.
My options keep shrinking.
My body keeps shrinking.
The weird part is that even though my entire frame has changed, the number on the scale only went down by about 5-6 pounds.
I still look “normal.”
All I can think is: thank goodness there is so much documentation of me loving food! Some treat me like I have an eating disorder now. As if that’s something to shame someone about anyway. (It is not something to shame, it’s a serious issue and should be treated like any other illness, the person should be treated compassionately and get the care they need.)
I don’t want to have to apologize for looking this way. But yet I feel compelled to do it anyway.
This is what happens when an entire culture worships the frame of a sick person and reveres it all over the Internet.
I briefly went to a little graduation ceremony yesterday. I try to show up when I can. I didn’t make it to the play on Monday. I couldn’t move. I couldn’t get out of bed until later in the afternoon. I keep thinking: oh yeah! I have to prepare for my colonoscopy tomorrow. And then I think: oh, that’s like a regular evening for me. Being chained to the bathroom.
At least this is on purpose.
A woman walked by - a very thin, fit woman - and the smugness emanated off her.
Because I don’t spend much time in that world, I don’t get it. I really don’t. I realized I have “achieved” something that is SO desirable. I LOOK a certain way.
I can live in my parent’s downstairs, living on government benefits, miserable, and yet…I have ACHIEVED the crowning goal of all upper crust white women everywhere.
No wonder I never minded my ass. My nod to my Spanish roots. Working class hands, callus and all. I’m proud, not ashamed of the fact that I had a curvy figure all these years. They meant I was healthy and could eat! And my hands meant I worked hard for a living!
All I can think about this frame is how it’s dangerous. I can’t lose any more eggs or I’ll be forced to go on TPN. I have decided to get the needles in the stomach every 6-8 weeks as a preventative measure.
I’m scared to travel far or for long because what happened that made me so sick in California?
I’m scared of so many things.
I don’t know what’s worse.
Dying in America.
Or how the dying are treated in this fucked up country.
I’m glad they’re all being nice to my dad and taking care of him. It’s good that they cook for him and my mom. That’s lovely.
I’m not sure what to do about my own food intake. I just can’t find the energy or motivation to make new things. It’s too much. It’s taken me weeks just to call the state and fix this benefits mess.
I ate as much as I could last night. I was so hungry! I’ve been really hungry lately. I’m afraid to add more eggs because then I have to do more work in the evening to get them out. I worry that I’m overdoing it, but then when I try to ease up, I can’’t lay down.
As it was, my stomach was gurgling and distended when I finally laid down at 2:30am. I didn’t sleep enough. I kept waking up, and then remembering my awake world is a nightmare and want desperately to fall back asleep.
Oh shit! I had a dream and I actually remember it! Some guy was going around with a plant and saying: these are edible flower petals, you should have one.
I was so hungry, I stuffed a whole bunch into my mouth.
A little while later, I saw blood coming out of the ears of people who had also eaten the flower. I went to the guy and said: what the fuck is in that plant? And he just laughed manically and walked away.
The others said it was a hallucinogenic and I start freaking out because I ate so much. When does it kick in, I kept asking? The ones with the blood were trying to find a ride to the hospital. I started to go with them, but then realized that the hospital was the LAST place I wanted to be when the drug took effect.
I kept trying to get answers: what’s going to happen? Why did he let me eat so much?
I waited and waited, but nothing ever happened. It never hit me.
As the dream started to end, or I started to wake up, I realized: I’m already there. I’m already in that head space which is why the drug didn’t impact me and I didn’t get the blood.
I’m too tired to analyze that shit. Bestie will have to take a stab at that.
There was a bright spot for me this week. I had my improv friends over again on Monday evening. We hired a teacher that another friend raved about. I can see why.
It was like 10 weeks worth of class packed into a couple of hours.
Really good teachers do that - that draw out the best in each student, help them tap their full potential.
I was the the last one to do a “scene.” A lot of improv is games, and then there are actual “scenes.” You’re given a few parameters on the fly, and you roll with it.
I was with a woman I’d never met before - the teacher brought her. She’d taken up to the 400 level - I’ve only taken 100 twice. But it’s like playing tennis with someone that’s better than you. They elevate your game. (Have I mentioned in here that I played tennis all through high school? i’m not that good but I really enjoy it.)
We were playing frisbee, that’s it. Somehow I came up with the idea that we were a married couple whose counselor told them to try to talk while playing frisbee to work out their issues (where the hell do I come up with this? Seriously, I’ve never had a waking thought about that idea EVER).
We ended up doing this really dramatic scene - no humor at all - and I guess I drew from different fights from over the years. It was TRIPPY how well we played off each other. We finished and I turned and my friends are just staring. I’ve always wondered if I could pull something dramatic off. I guess so.
Between that and a discussion I’d had the day before, I’m feeling proud of my communication skills. It’s like: wow, working on my communication skills ACTUALLY WORKS. Fancy that.
So much of why I avoided anything serious for so long was because I didn’t want what I saw around me. If I was going to go down that road, I wanted something more elevated. And I knew I didn’t have the skills to do what I wanted. I didn’t want to fall into old scripts, that I was certain of. But I didn’t know how to up my game.
Turns out therapy helps! And making friends with really good communicators has been amazing as well. Maturity is helpful too.
So if I don’t make it, at least I can feel like I accomplished something I always wanted to do:
Become a better communicator when I’m dealing with emotional stuff.
As a teacher, I’ve always been forced to communicate well. When you’re trying to teach toddlers how to peel a carrot, you have to be VERY clear with your instructions. That comes easily. But if there is an emotional component, I’d either cry or get mad. Those were my defaults.
They are a lot of people’s default. Why aren’t we teaching kids how to communicate when they are small? And then increase the level of skills as they grow up? This is as perplexing as not teaching them how to feed themselves.
And we wonder why we have a nation full of people obsessed with food and yelling at people on the Internet.
It seems so obvious to me, and I know it’s obvious to a lot of other people too.
Why does it take so long to change? How did we end up in such a terrible mess in this country? How am I going to get through this next chapter?
How do I keep hanging on? Especially if I get bad news?
I’m so tired that I can barely keep my eyes open, but I have so much to do. Sarah is coming over, and there is work to be done since we haven’t met in awhile. I have a new volunteer coordinating my driving. It’s all good and wonderful - it’s just work to manage all of this. Decide what to prioritize. I’m so proud of myself for calling the STATE! That’s how little productivity I’ve had.
I did record a podcast on Consent with the wonderful Tabbitha yesterday (coming soon!! I realized I forgot to ask my guests to leave a review on the podcast! Ha! Pretty obvious. So much for thinking I see the obvious. There is so much I still don’t see.
That’s the hard part about waking up. The more you wake up, the less you understand. The more you realize you don’t really see hardly anything at all.
I don’t know how to tell the people at the top, the white ables with cash: you’ve got to stop thinking you know everything about everything simply because you were born lucky. It’s baffling.
It’s like them going to a prison and informing the prisoners how to function within the system.
Until you’ve been there, you really don’t know shit.
I used to be such a know-it-all. I still am, let’s face it. But I try to at least admit my deficiencies.
In this culture, there is no winning. If I’m too quiet, I don’t get help. If I holler, people ask why I’m yelling so much and turn away again.
If I ask calmly, they say: well you seem fine, you can do it on your own.
There are too many of us now. That’s the problem for those in denial. There are too many voices now to ignore.
It’s interesting because I was seen as eccentric before. But now that the veil is coming down, and people are realizing how truly fucked up shit is, I seem to be an easy person to target. I guess it’s an old story right? Shooting the messenger.
I didn’t MAKE the mess. I’m just yelling about it.
But it makes people feel bad. Which I get. It sucks to wake up. It’s very painful to examine oneself. I know because I’ve been doing it hardcore these past couple of years. But I couldn’t pretend anymore. I can’t pretend anymore. I need kindness and compassion around me. I can’t handle anything else.
My first response? Victims don’t start podcasts.
They also don’t get awards from senators. Or fight for people sicker than them.
I’m so tired of it all.
I carry on, but it is not easy.
I just need a small break. I’m going to ask my doctor to give me a heavy sedation tomorrow so I can sleep for a couple of days. I just need to live in the dream state for a couple of days. Hopefully not on a bad acid trip!
I hope to dream of unicorns and rainbows. Something that will let my psyche take a rest from the battering.
Too much. All of it. It’s just too much.
I carry on.