I’m laying here trying to sleep. I went to bed late. Again. I really try. I do. But I’m completely awake at midnight. I’ve always been a night owl, but now it’s worse than ever.
Meanwhile, mornings are tough on me. I’m typing this with only one eye because one still isn’t focused. Sometimes I get lost in a project or getting stuff done and look up and see the clock says 1am. I’ve been embarrassed to admit this because it makes me feel like even more of a freak. But there’s relief in admitting all of this. At least here, for now. Maybe I’ll just lose my shit all together, mentally, and then I won’t be able to write anymore.
Or maybe I’ll go into the hospital one day and never come back out.
Either way, it makes me feel better to write things here, admit things here. I’ve said it! I think it. There’s a lot of power that comes from controlling my own narrative when there are SO many other things I can’t control.
My dad is supposed to start chemo today so it’s not surprising that I’m freaking out. He is going to be getting taxol! The one that I had that made my hair fall out and my nails nearly fall off. I only took one photo of my nails that I found on my computer while searching for egg recipes. One of the kids is preparing for his culinary course so I sent him a few old recipes from my JCC culinary director job. Dang, I need to curate those because it’s a goldmine, just sitting on my little old computer. So much to download! So much to organize.
The Internet may have a zillion recipes, but most of mine from that era are written by old-school chefs. People that ACTUALLY trained in France, went to school, worked with the best. Still work for the best. One of my chefs was a private one for Conan O’brien before he left for California. I nearly worked with the one who worked for Jerry Seinfeld (he basically wrote the cookbook for Jerry’s wife).
When I say my list is powerful people, I’m not joking around.
In any event, I’ve been having a tough time, NO SURPRISE THERE. I’m, of course, scheming on how to keep my dad alive. Dr. H did an AWESOME job. I knew he would. I get a little nervous because he is so quirky - he is one of those brilliant genius types - but he nailed it.
My dad has been sitting slumped over, a man defeated, for days now. Even more so yesterday. It took me a couple of hours to notice, but by the end of the evening, he was sitting up straight.
Dr. H regaled him with stories of people who were given two months to live.
Several times I went by, got down on my knees like you’re supposed to do with kids - so you can look them in the eye, while meeting them at their own level - and I said: do you know how many times they’ve written you off, Dad? You’ve been out of it a lot of the time, but I was there. Four, maybe five times now. And you pulled it out EVERY time because you’re way stronger than they get. You can do this.
I walked to a family member’s home last night. I’ve been doing this more often lately, because I think I want to be around people who understand the Hell I’m going through.
My dad has been SO careful with his health over the years. It’s so UNFAIR….
He only DRANK coffee on his bike rides… past tense. Fuck, it’s hard to wrap the brain around how fast this is going down. That’s the shocking part for everyone.
But he’s MARV NEGRIN, he’s never smoked in his life. And it’s LUNG cancer that’s getting him? What the FUUUUUUCCCCKKK?
I knew. Of course. Because we can be more fit than everyone else in the room, but we’ve got those messed up insides. There is SO much we base on the shell, by the outsides, and it doesn’t tell us jack shit about someone’s insides.
Lung cancer isn’t even a Lynch Syndrome cancer (the genetic disorder he and I share.)
Because we’re missing half our army to fight cancer, we really are at risk for all cancer. It’s just that they’ve noticed patterns in Lynch patients who seem to get CERTAIN cancers more frequently.
Who knows how recent their data is anyway. People also don’t understand the research world, and how political and complicated it is to get funding for research. Now that we have such an overt, corrupt administration - the corruption was always there, but it used to be more hidden, deals made calmly while sitting on the golf course in Texas sipping whiskey, not by foul mouthed mafia from NYC, but the corrupt, country club gentiles got into bed with the hooligan and here we are). Like I’ve been saying: the medically fragile are at the front lines in this war that so many people want to pretend isn’t happening.
My dad and I will be lucky if we survive the next election.
He is suffering so badly, AND I found out they prescribed him opiates to SLEEP. What the fuck?
When I was looking for my expensive laxatives that I keep from year to year (when does this stuff REALLY expire anyway), I found an entire bottle of pain meds. I hate that shit. I remember trying to take some right after my surgery when I got out of the hospital. I had some scary ass dreams, creepy as hell. Nope, Tylenol for me!
We all have super high pain tolerance - well, my parents and I, not the person who called to complain to me about toe fungus while I was going through chemo, true story! He legit droned on and on. Have I told you about my weird thing and feet? I’ve seen grown men playing with themselves on the subway, a very dirty homeless man, I’ve seen another guy doing crack or whatever the hell, it was extraordinary to watch, he opened up his little ziplock, poured it out on some foil, snorted it, he was sitting on a 3-seater at the end of one of the subway cars, rolled it all back up, got it back in the baggie just as the doors opened at Times Square, it was the express from 96th to 72nd, one of the longest legs on the Express train, he’d been doing this for so long, he had the whole thing timed perfectly, anyway, those two guys didn’t get me up and out of that car, it was the asshole who started clipping his fucking toenails ON THE SUBWAY, I was like: ahahahhhhahhahah get me out of hear EVEN THOUGH I HAD A SEAT which anyone who knows NYC, you don’t give up your seat and leave the car unless something really, really bad is going down, don’t talk about gross feet, and don’t put them in my face omg I’m rambling).
As I was leaving the house last night, one of the teens was leaving too. They all started talking about something, and I had to catch up quick. Apparently, a couple of the high school boys taunted one of the Yeshiva (the Jewish high school) boys and said: we’re going to gas you.
Yup. A teenager was threatened with MURDER this week. And invoking the Holocaust….
My heart stopped in my chest. If anything happened to one of my precious….
Years ago, when I was living in Israel, something very strange happened. I was with a woman who lived even closer to the edge than I’ve been lately. Talk about sensing things. I’ve got nothing on her. Anyway, we were in line for food somewhere and someone said something to piss me off.
It doesn’t happen when it’s regular shit. Who put the empty milk carton (or in this house, almond milk) back in the fridge? Oh, the paper work is late.
It happens when there is an injustice. That’s when my Hulk comes out. I hate it. I’ve been scared of it my whole life. I think keeping it inside makes me sick. Which is the ONLY reason I’m even discussing it publicly. That, and it could come in handy these days.
I think it was something sexist and/or derogatory. That’ll do it.
I went OFF on whoever said the rude thing. It’s usually when I’m defending others. When I get beaten down, I get sad, like I mentioned. But if someone I care about is being hurt? Or babies are being hurt at the border? (Oh, gd just thinking about it, deep breaths, deep breaths….) I can feel it bubbling up inside of me.
Every once in awhile, it pops out over something stupid. When I lived in NYC, I was visiting back here and returning something to H&M in the U Village. The girl got snotty with me. Now, I come from a long line of women who have whatever this thing is. Their only outlet was sales girls. I remember being mortified as a child when my mom would rip into them. Oh gd. Just thinking about it.
I usually can keep mine under wraps, but I must have been in a bad mood that day. I did maybe an 8 on my New York Bitch scale. 10 being a signifiant chew out. The girls in New York don’t even bat an eye lash. And when I say girl, I mean, very young women, like late teens. It’s not cool to call a grown ass woman a “girl.”
With this girl, I went too far. She looked like she was going to cry.
After that, I’ve always been careful to keep my NY Bitch at no more than a 2 or 3, tops here in Seattle. Last year, a staff person at one of the doctor’s offices - which is running much more smoothly now, thank goodness, but they were a shit show for awhile - said: why are you talking to me like that? I was perplexed because I was talking in my regular voice, just firmly, like I would with a new class of kids. Asserting my authority.
I said: like what?
I can’t remember what she said. But I remember my reply: this is how I talk! This is my actual real voice!
Lord. Cultural differences.
Anyway, I hear this news about the kid being threatened with MURDER and how so far, no surprise, the high school and the “powers at be” were doing nothing.
I hear this before I start walking home. I’m lost in thought, but walking is a good way for me to work things out. It’s so much a part of keeping myself sane. When I was going through the melanoma surgeries, I suffered so badly because I couldn’t walk off my thoughts and feelings.
That was when I had my first suicide ideation. I’m working on getting my nerve to share all of that in a video.
If ME, the tough Julie Negrin, has felt this way, then….
The kids need me to do it. If the kids need me to do something, I’ll do it. I’ll walk through fire for them. I’ll push myself out further, I’ll do anything for them.
But that’s for another day.
I’m walking along the main street. People have been driving more and more aggressively in Seattle lately. You can feel the rage brewing. At least on the east coast, people let their rage out in little bursts. An exchange with a cabbie, a fit at the bodega. Little bursts of steam being released is a good thing.
Not here in the beautiful Pacific Northwest. People bury all that shit and only let it out on the roads.
I’ve gotten to the point now when I’m nearly run over, I’ll start to holler. Last week, the car stopped. I couldn’t tell if it was a younger or older person. It was a woman with a funky haircut and glasses, could have been any age.
When the car stopped, I knew it was a young person. They were driving like a young person! I’m walking near the high school so it’s not unusual to have a brand new Lexus nearly plow me over. I’m super cautious, but still. I didn’t stop walking. I may have even smiled thinking: sure, let’s have a hearty NYC argument! But then the car kept driving. And then I think: smart move.
On the walk home Friday night, I was wearing a super noticeable reflector vest. I couldn’t find mine but my family has a zillion because they keep Shabbat. That means they don’t drive from Friday night to Saturday night (or use money, or technology). So I had on one that was even more noticeable than usual.
I stopped at one, crossed, no problem.
The next one had little reflector flags that you can carry across the street. Often, on Shabbat, people are crossing the street with small children and can’t get across quickly like someone like me. There are also SUPER bright street lights right above this cross-walk.
I stop at this cross-walk, close to the street, like an east coaster. I don’t grab a flag. It’s not December with minimal visibility and rain, and gray. The sun goes down so late in the summer here, it’s not even completely dark yet.
Nobody stops. Now I happened to take my driver’s ed course in Washington state so I know that it’s an actual LAW to stop if someone’s at the cross-walk. Normally, people stop so diligently that I get irritated. Keep going, keep going, I’ll wait to cross until all the cars are gone, i think. So inefficient otherwise. People don’t understand walking culture out here.
In San Diego, I lived in a very hip neighborhood downtown. Driving out of it was a test of patience. Once, I had two girls STOP in a cross-walk RIGHT in front of my car, and gesticulating widely to make a point, continued their conversation while I was waiting to go through the intersection.
Deep breaths, Julie, deep breaths. I was calmer then. I don’t think I even honked or did anything. I waited patiently.
I’m not feeling so patient these days.
So like any self-respecting New Yorker, I start yelling. YES I ADMIT IT. I lost my shit on Island Crest Way last night. At least six or seven cars blew right past me.
Why enforce the law when the top officials are breaking it left and right?
Why stop at a cross-walk when the top officials are literally getting away with murder?
Now, it’s Friday night. Which I’m well aware of. These people either don’t care, or don’t know about Shabbat. But after what I just heard and my dad wilting away while people plan their $20,000 summer vacations with the tax break money they got last year, and I’m getting $15 per month for food stamps and the medical system is running amok - because again, why follow the law when the top officials are doing whatever they hell THEY want?
The corruption is SO overt now, it’s ridiculous.
But it’s my dad’s life on the line. People don’t seem to understand that the luxuries they live with come at the expense of poor / sick / marginalized people. How they don’t make that connection, I don’t know.
So, soon, I’ll make it for them. But it’s got to be done right or it won’t work.
In my defense, I forgot it was summer and people had their windows rolled down. More and more expensive cars have been showing up in driveways in the last few years. This used to be a chill area. And locals are very unpretentious about money. To locals, it’s considered garish to flaunt money. I know TONS of families with so much but still drive regular cars.
I start hollering: who is going to let me cross the street!?!? Or something to that effect.
Oh! I never finished the story in Israel.
Someone said something that was rude, and I went off. I was very young then. The good thing about getting older is that I’ve been able to control this side of me.
My friend who lives at the edge says later to me: Julie something weird happened when we were in line.
My heart stopped. I think I knew. I can feel it.
She says: it’s like you grew, it was the weirdest thing, it was like you were this really big person while you were calling out x.
Oh no. OH NO.
So I tamped it down. I kept it hidden. I did everything in my power to keep it under control. I didn’t even drink for most of my twenties. For my health. But also because of this.
In New York, I found that I could let out little bursts, like I said, because it’s more socially acceptable.
I could stomp up Broadway and nobody would bat an eyelash.
The last couple of years, I’ve been trying so hard to keep it under control. Not that hard, because like I said, when it’s me that’s being ignored or slighted, I just get depressed.
Now that my DAD IS DYING, I can feel it bubbling up inside of me in ways that terrifies me. Lately, I keep thinking: if i I do this right, I can channel it in a video, like the actors do for a character. This is why I was amazed at how I pulled off that dramatic scene last week in my improv class.
The look on everyone’s faces after we finished the scene….
Ok, I can do this, I thought. I can take whatever this thing is and I can channel through art, and hopefully wake some people up. The goal, of course, is the least amount of damage as possible in the long run.
What the wealthy don’t seem to get is that I’m trying to protect them too. We all need each other. That’s the lesson from all of this.
We all need each other. They need me. I need them. We all need each other.
Unfortunately, that’s not what most people are feeling and thinking in America right now.
I have to find this video of characters that are all hungry…ha! I found it. Fucking Google. All over Seattle building their buildings. For a reason! I just googled: video people feeding each other. And it came up first.
We all need each other.
One of my favorite movies is War Games. I love the end, who doesn’t? When the computer says: the logical thing to do is not play [go to war] at all. Care for a game of chess?
The best thing is if we stop it BEFORE it gets bad. Nutrition. Prevention. Don’t get sick in the first place.
The nurse last year that wheeled me out, before the world went totally bonkers and I was being rushed out while still drugged, said to me: it’s really astounding that you have no polyps at all with your genetic condition.
It’s easier to prevent problems than it is to fix them after they’ve gone bananas.
For awhile, I may look like a crazy person. And I mean no disrespect to the mentally ill.
I know that I’ll appear crazy. I have appeared crazy.
It’s part of the deal. I had a much smaller dose of how this feels when I started advising people to stay away from high fructose corn syrup and trans fats in the mid-90s. OMG. You’d think I told people to kill their own children.
Now? That is considered totally normal.
That’s how it works.
I remember being so baffled and hurt when the rich ladies started bursting into the food scene.
One took me out to brunch to pick my brain. I was so naive and generous, I gave her all this advice.
Then, she turned on me. It wasn’t the only time that happened.
This time, I’m prepared.
Anyway, finally a car slows down as I’m yelling FUCKING MERCER ISLAND.
I start to cross the street, quickly before anyone changes their mind.
I hear a voice. Oh shit.
It’s a man who looks like he can be related to the Maimon boys (who I love, so I immediately feel calm). My age, cute (still weird that guys with all gray hair are my age, but that’s what happened, I remember seeing a quote in my twenties that said: inside every old person is a young person wondering what the fuck happened. I remember thinking: yup, I already can see that. I asked my mom once when I was young: do you ever wake up one day and feel like: I get it! I get life! You know when you’re like FIFTY!? She just laughed and said: hell no).
The guy in the car calmly says: it’s dark and we can’t always see you, you should use the flag.
It was so rational. He looks so familiar that I’m wondering if I know him and he knows who I am. He was so chill, and logical. I have that super strong cerebral side, THANK GOODNESS. Also, my brothers pounded logic into me. (One of them quite literally did that but that’s for another day.) One worshiped Spock on Star Trek. See Julie, he’d say, don’t be so emotional. Be LOGICAL).
It’s been a battle. Balancing that hugely emotional side of me and the incredibly cerebral side.
It’s only the last couple of years that I see being emotional as an asset instead of a weakness.
When I share my depression online, my tears, my fears, people can * hear * me because I’m tapping into something they feel themselves. Or have felt. Or whatever. It’s so HUMAN.
I don’t love having to do it though. It’s very, very hard on me to share such personal pain in a public way. It’s really tough on my mental health AT the moment I’m doing it, a little before and a little after. But then I’m SO relieved that it’s OUT of me, and being heard by others, that it makes that (often extreme) discomfort worth it.
I remember a few months before the 2016 election, I said: why aren’t the Dems running on healthcare? It was so obvious to me. I was freaking out about my healthcare as the hooligan started looking more and more like he was gaining headway. I remember it was around September that I got a bad feeling in my gut.
This isn’t right. Something isn’t right.
I know the chef that worked with the Obamas. I have his personal email.
I thought a lot about sending an email: you’ve got to tell them. You’ve got to tell them to run on healthcare. It’s a no-brainer. Too many people are afraid of losing their care. But I didn’t.
Why? FEAR. Ugh.
This is in large part why I work so hard to overcome the fear and be bold. (what if I had sent the email…?)
Then a short time before the election, I saw a photo with Rudy Guiliani grinning like the cat who swallowed the canary.
Oh shit. Right around then, Rudy was bragging in the press. Oh shit oh shit oh shit. He knows something. FUUUCK.
That’s why I shared my post right before the election begging people to vote for the 20 million who could lose their healthcare.
I got patted on the head, of course. Oh Julie, he won’t win. Oh Julie they’ll never repeal ACA.
ARRRHGHGHGHGHGHGHGHGHGHH and now my dad is DYING!!! A broken man sitting on the couch slumped over with 24/7 oxygen and a WALKER!!! WHY WON’T PEOPLE BELIEVE ME!!!!!?!???? I worked so hard, so hard to be a trustworthy source….sacrificed so much….
So this guy in the white car says this to me.
And I say: you’re right. You’re right.
I turn around and try to cross the other side of the street as a car comes barreling down toward me, not slowing at all. I think I put up my hand like STOP DUDE. YOU CAN’T NOT see me NOW.
I’m sure the other guy is like what the fuck? Why isn’t that car stopping. But still from his perspective, I looked unbalanced.
And maybe I was.
When I finally safely got to the other side of the street, still not pulling out my flashlight for some reason, something I usually do on this walk, I started to cry.
I’m the nutty woman yelling in an intersection on Mercer Island. OMG what has happened to me?
I waited for the shame to wash over me.
And it didn’t come.
I was puzzled.
I realized: ahhhhh, this wasn’t THAT weird because in New York City, this wouldn’t even get people to look up from their…well magazines in the old days, phones nowadays.
I suddenly had flashes of me doing something similar - not often, maybe once a year, just standing in the street, waving a fist, damn you cabbie! Damn you for splashing that entire puddle in my FACE. So many people crammed into such small places will do that.
I didn’t feel shame because it made sense what I did.
It was actually quite logical of me to holler.
I’ve imagined myself metaphorically hollering around this island for the last 2.5 years.
And to an outsider, to this white guy in his white car driving probably to his beautiful white house with his beautiful white wife and his beautiful white children, I looked like a complete nut.
But if you study all the things that led up to that moment, my reaction seems totally justified.
Some - not all - of those people blowing past me know that it’s Jewish people crossing the street on Friday nights.
It will start with vandalism on the synagogue sign. Then maybe a brick through a window. Words lead to action. Action leads to violence. It’s the way it’s always been.
We think that time and technology make us “better” humans than the humans of the past.
I think about if he DOES know me, he’ll find out about my dad. Everyone around here knows my dad. He is a fucking local hero.
The guys - and women for that matter, I spent time talking to one on the phone last night, she used to come over in high school and now she is a pulmonary doctor, I wanted to make sure that chemo is ok - around my age LOVE my dad.
Well then it’s time to step forward. Because he is dying. And he is dying needlessly at 74 years old.
He never got even one year of retirement.
We’re going to GAS YOU.
Can you imagine hearing that as a TEENAGER?
And then the adults are wandering around worrying about random stuff?
I don’t even know the kid this happened to so I have no idea what his family situation is. I’m just saying, the kids are terrified and rightly so. They SEE it. They FEEL it.
Like I’ve also said: it’s hard for us to imagine what it’s like to be worried about being murdered in math class.
It’s so hard to wrap the brain around that.
But yet, that’s how these kids live. Every day. They live with that fear.
I live with the fear that the medical world will let me die.
Next up, I’ve got to get a Will and figure out a hospice. I’m not going to plan on needing it any time soon, don’t worry. I just need it in place for my mental health.
I don’t trust easily.
If someone has proven trustworthy for years like my doc this week, then I trust. Anyone new? Forget it. I don’t trust at all. They’d have to show me for a long time. This new primary doctor that’s an angel, I do trust her. She has proven that I can trust her.
I don’t trust easily.
I never have. But now…a few are sliding in at the last minute. But the vault is about to be shut again. And there won’t be getting in at this level, that’s for sure. The people I’d pass my money off to, or allow to be my medical directive. I don’t know who I’d choose. But I know the people I’d choose FROM. The rest…
I don’t like it. I don’t like having to think that way. I hate it, actually. But we are literally at war. And people are choosing their sides.
You’re either helping marginalized. Or your siding with the people hurting us by doing nothing. Either you’re helping the planet, or you’re siding with the people who are hurting it. Either you’re helping democracy, or you’re siding with the people hurting it.
I’ll give a little more time. But the door is starting to shut slowly. I may be chatty and friendly and very, very cordial, but inside I’m thinking: dude, you can’t play me, but it’s fun to watch you try.
That’s what I wanted to become as a kid so badly.
Someone that wasn’t afraid of ANYONE. Someone that wasn’t afraid to speak out. Someone who had played the game so long, they could not be played.
I had a teen, a non-relative, attempting to do something silly lately. It’s quite cute that this teen thought they could get away with their silly business.
It’s like baby hands pounding on my leg.
A little annoying, but mostly adorable.
They’re so cute. I mean, I get that they think adults are idiots. We are, in so many ways. I can see US through THEIR eyes, that’s why I get them so well. I can flip back and forth, because I never shut my eyes all these years. I can see what they see, AND I can be the grown up.
I did nothing about it, of course. It’s a child, even when they think they’re so grown up. I thought the same thing! We all do. We think we’re done growing up by 19, 20 years old. Hell, I moved in with someone at this age, and attempted to live like a grown up.
Whoaaa, I remember thinking. I don’t know SHIT. This is super hard! So many things to navigate and I haven’t even figured out WHO I am anymore.
It’s been a long ass journey getting here. To who I really am.
A long, painful, terrifying, arduous journey.
I need to go now and find out if they are about to pump toxic chemicals into my dad. I hear the oxygen machine still so they are still in the house. I think. My mom often forgets to turn it off.
Just called upstairs. They are heading in. Fuck.
My first chemo appointment got fucked up. Yup. Even back then it was all messed up.
The idiot at the oncologist office gave me one date and gave the hospital another. I had the paper with the date on it. They felt so bad. I was so psyched out, scared out of my mind but prepared for battle. My mom had flown in for it. You have to have such a strong mental state.
I left a note for my dad to call this morning and make sure it was all set. And to make sure they can give him the chemo in an IV. He doesn’t have a port or PICC line.
I also reminded them to tell them I had an adverse reaction to taxol. I don’t think I even shared that. I didn’t share so much back then. It was awful. It can kill you! Right then and there. They started listing off all the potential bad things, RIGHT before they gave me the drug, and I said: no no no no don’t tell me this I’m highly suggestible!
This is why it’s so powerful to nudge me along: you can do it Julie. You can do this, you’re strong, you can blow yourself up, you can fight this cancer, you can fight this fight.
I need it.
I hate admitting that I need it. I hate EVER admitting I need anything. But I need it. I need the comments. I need the urging. I need the nudging: do it, do it, do it, you can do it.
I do. I’m human like everyone else.
Even if I have this strange thing inside of me that I’m mortified to admit even on here to my five readers (I’m bumping myself from four to five readers because one of my friends said she sometimes checks in here, that’s when I realized that the long form is actually a good thing for me, only the most dedicated will plow through and read all this crazy shit and YES I do realize a lot of this sounds crazy, so fucking what. We are all bananas. It’s part of being human. I’m just owning my crazy, and admitting it to the world. That way, people can’t whisper, did you hear? Did you hear Julie lost her shit in the intersection? I wasn’t going to share it here, at first, i thought, this is too crazy to share, but then by the time I got home, I’m like no crazier than anything else I’ve been saying or doing and my DAD IS DYING so I think I get a pass, a few passes, and damn people stop your cars for people in cross-walks, I might as well just get it out now).
If I control the narrative, then it can’t control me.
If I out my weirdness, then it can’t control me.
If I out the Hulk, then nobody can be surprised when it bursts out of me.
I’m almost positive I know that guy. He was so gentle with me, that’s what calms me. And he didn’t say anything in a patronizing tone. THAT won’t work. He said it calmly, gently and logically. You need to use to use the flags, and then immediately, that burst of fury is gone.
He must have been so caught off guard by me saying you’re right, and then bolting across the street.
He was right. I should have used the flag. Though in my defense, I was wearing a reflector vest and there were huge lights - AND HE SAW ME, why couldn’t the other cars see me?
The sad part is I don’t think that the flag would have made a whole hell of a difference.
See, life is different for him.
People would stop for HIM.
Not the lady with the mohawk and a tube coming out of her body.
I can be ignored.
That’s what the teen tried to do. Trying to use a weakness against me.
Please. That’s why I share all this. Because in this strange and curious way, being vulnerable is actually hugely empowering.
When I tell everyone around me: I hate being ignored.
And then they ignore me? Well, I can shrug and say: you’re not being a very nice person. I shared my vulnerability and then you tried to use it against me. I did my due diligence. I told you what I like and don’t like.
I’m ok, because I’ve found strength in sharing my vulnerability. I’ve found peace in being exactly who I am in public and private. I’ve found power in saying what I need to say out loud.
If you choose to be a person that isn’t nice to me after all THAT? That’s not on me. That’s on YOU.
And that’s why vulnerability is so incredibly important.
It gives me such peace of mind now.
Well, now everyone knows how depressed I am. Either they can walk away and stay away - that’s their own choice, they have agency over themselves, I have to honor that, and understand that they are choosing to stay away because of their own mental health stuff or they don’t want to deal with mine, whatever it is, I have to honor it - or they can stick with me and be as compassionate as possible.
I can’t make anyone do anything. All I can do is share my real self, share my fears and vulnerability, and see where the chips fall.
It isn’t easy! My god none of this is easy. It’s very painful to wonder, and worry and feel anxious. I have a friend I really adore that I’m supposed to see this weekend. She hasn’t reached out, and I’ve chosen not to do what I’d normally do: are we hanging out? Are we ok? Do you still like me? Do you still like me? AM I OK?
Looking for so much validation outside of myself. Ugh. Codependency….
Instead, I’m keeping myself tucked in, talking to the people who ARE reaching out. I can’t do it any other way anymore. I just don’t have anything to give. I can’t carry the entirety of the friendship on my own.
I need to know I can trust anyone I let close. To know they can handle whatever the hell it is that I’m going through.
I get that death, and sickness aren’t for everyone. I was seeing someone right before I got sick. in San Diego. Someone else showed up around that same time. I really liked the first person, but the other one wasn’t phased by the worse and worse medical news. When I told the first one about the polyps, I felt an immediate shift. He’d been really into me, and then I could feel the coldness.
It hurt, for sure. It definitely hurts being the medical person and having people not be able to handle it.
I let him off the hook, and the other swooped in. That ended up being a whole story in itself. One I’m not ready to share. May never share. Maybe in 20 years. That’s about how long I need to share those stories publicly!!! Haha, wouldn’t it be a hoot if I was alive in 20 years.
Anyway, the first one felt so bad and kept writing me about how bad he felt. He wanted to try and at least be a good friend.
So I gave him a task. He did the first one, dropping medication off at the hospital, I can’t remember why it needed to come from an outside pharmacy. But he didn’t come in the room, someone went downstairs to get it from him. I was on a LOT of pain meds, but through the IV. I hate the pain PILLS. Ugh. I can’t believe they gave that shit to my dad! They DEFINITELY think he’s dying if they gave him opiates for SLEEP.
The second task was picking up a friend from the airport once I was home. She was going to care for me - we thought I’d be home from the hospital over a week at that point, but I ended up staying in for the hospital for two weeks because my gut fell asleep (and never really woke back up, so much sleepiness, around me, inside of me…). My mom was still in town because I was so weak still. I couldn’t even shower by myself.
Let me tell you. There is nothing more humbling than having to be bathed as a grown adult. My aunt, my bestie, my mom, all showered me.
Anyway, this guy walked my friend all the way to my front door, and then BOLTED!
YES! It happened and there were several witnesses. My poor friend is like what the hell is going on? I’m sitting in my apartment, nervous because I hadn’t seen him in awhile and I’m frail and weak.
He literally took off and left the building!
He wrote me this long email - he was a writer, of COURSE - and it was lovely.
But I was like: dude, we can’t even stay friends that was not ok on so many levels.
I know I know he said, I don’t know I just freaked out about seeing you!
Well, buh bye.
And that’s what I have to do in this new life. I get it. I totally do. I’m actually very squeamish about dealing with an injured leg bleeding or something like that. But I can talk about really anything in the whole world. That’s why teens like hanging with me. They know they can’t freak me out. I AM freaking out sometimes (omg omg omg I don’t want to know that I don’t want to hear this) but I stick it out and stay calm. So it’s not a stretch for me to understand that some people can’t handle all my medical stuff. (I’m still in awe that I share what I share, it’s only because I’m afraid I won’t make it and then it hits me how silly this fear is, plus what if I get someone to get a cancer screening? What if my sharing ends up helping people? That keeps me going).
So much self-control required in this current life. So much.
I’m trying not to eat processed food anymore. Including those fucking trader joe cookies. I feel like I got my clean bill of health and I want to keep it that way. I’m allowing myself as much coconut ice cream as I want - that doesn’t HURT me and most of these products that I’m eating use high quality ingredients.
I’m trying to avoid the SHIT sugar. The shit ingredients. And no more licking frosting off the doughnuts that leave a layer of gluten on! NO MORE. I have to.
It’s so hard to control that. It’s SO hard to be hungry so much of the time. I’m going to try fish this week. I have to. We are down one man. I can’t afford to go down now. I’ve got to be even more disciplined than I usually am. I have to be as strategic as possible.
What if my body was connected to Democracy? Wouldn’t that be a cool sci-fi movie? I think about it all the time, I wish I could write a novel like that, I’m scared to try fiction, isn’t that ridiculous? Telling the truth feels easier for me for some reason. And if Democracy dies, I die. If I die, Democracy dies. We are linked. Would be a cool movie…I’m falling asleep.
I had to get these words out. I was laying here and laying here and this post was running through my head. Once it’s out, I can sleep again. I’ve been writing for a long time. No photo yet. Later.
Now I sleep. And try not to imagine my dad dying from the taxol. Wishing it was all different. Wishing I could wake up in 2008, when I was so healthy. And I had a nest egg. I could travel instead of write my cookbook. I would do it all differently now. So different…