I was doing all right yesterday. I rested, which I sorely needed, and got a lovely visit and little gift which was perfect. I have the bestest friends, truly. I lucked out in that department for sure. I met with Sarah and got some actual shit done. Wrote my letter to the state about my food benefits! Which I sent to my friend who knows this area better. She wrote back with a completely revised version, which I’m so glad to have. My letter was…well, hers was very diplomatic - she understands what the state agency people would want to hear.
I ran a couple of errands, did a little more visiting. I always feel better when I’m able to be productive. I HATE not being productive. It’s one of the most annoying aspects of my current life. I’m super tired today, but slept well at least. I may have to take a nap, I’m so tired and that’s saying a lot given how much I slept. This heat…makes me tired, my blood pressure drops low when it’s hot because I can’t stay hydrated like a regular person.
When your blood pressure is low, it’s not flowing properly and it makes you sluggish.
I got all the way to the evening without crying and then walked by the living room late last night. My mom put back the tray on the ottoman which was removed for the shiva.
That did it.
It still has a few of his things on it. His little hand weights. Just thinking about it makes me cry now.
I don’t know what it’s like to lose a parent that I’m not living with, or while I have a job or any of that.
All I know is this experience. There is just such a huge hole. He left such a big hole. I don’t know how to explain to people that losing my dad is one whole aspect of my grief. Losing my coach?
I feel like I’m sitting on a teeter totter, waiting for him to get back on. We’d egg each other on - all wordlessly, of course. But after each medical mishap, he’d get up and walk. So I’d get up and walk after mine. I studied what he did and copied as much as I could. I should make it clear that I may talk about some athletic abilities here.
But I’ve got nothing on him. That’s why it’s just so hard to believe he’s gone. He was SO strong! He could eat anything! Up until the end! Popcorn, wheat, dairy, all of it, just had to be super small portions. Oh, he couldn’t have a sugary drink or food on an empty stomach.
Otherwise, he’d have what they call a “dumping” episode. The small intestines can’t handle the sugar onslaught. He’d start sweating and get woozy. When it happened, I’d quickly get some yogurt and orange juice to bring his blood sugar back up - the protein in the yogurt would then balance out the quick shot of sugar from the o.j.
He’d have to shower afterward, the sweating would be so bad. It was awful to watch. There’s not much you can do but try to recalibrate his biochemistry and act supportive.
I took a kid shopping recently. It felt weird to do given that I’m in mourning. He actually likes shopping so this is what he wanted to do. Teens… Younger kids are so much work, but there are so many activities you can do with them.
I tried on these jeans that I’ve always wanted. Usually called boyfriend jeans, but these were called girlfriend jeans which was pretty cool.
On my old frame, they never look right. Well, I could have found a $200 that looked right, but I refuse to pay that - always have - but especially for a ripped pair of jeans, so irritating. The ones I tried on were super cheap, sale.
I grabbed a size smaller than I used to wear and one below that.
I still have trouble wrapping my head around my new frame. I ended up buying the smaller size. I tried wearing them, but they kept sliding off! What the fuck!?
So I went back yesterday and got a size smaller than that, thinking no way, they’ll be too tight.
Nope, fit just fine. I refused to try on the one below that.
I started thinking…I realized the last time I wore this size, I was in middle school. I bought my first pair of Guess jeans in this size - my mom refused to pay the full $50 which was CRAZY expensive back then so I paid $25 from my babysitting money and she paid the other $25 (from the store that the neighbor guy’s grandparent started years ago, weird serendipity). I was a tiny little thing then. I didn’t get hips and the beginnings of my ass until 15/16 years old. Big boobs didn’t come in until late twenties! For real! I know, this irritates some women. The same for a family member. I did get heavier around then, but the boobs stayed no matter what after that.
I’m currently the size of a middle schooler. I still have that middle age woman thickness still, and not that kid like wiry-ness (which I never had even as a kid) but damn.
I’ve been spraying whipped cream in my mouth ever since, gobbling up the cream cheese. Diligently rifling through the freezer for a coconut ice cream I can tolerate.
Looking like a child has never been an aspiration of mine. I know it’s SOOO admired in this country. In fact, I found a photo posted by one of those new age “gurus” that’s taken from the back. She looks like an 11 year old girl from behind, and nobody is commenting on it! If she was a little heavy, god help the Internet trolls.
But looking like a child while nearing middle age? Wahoooo!
I should make it clear, after mentioning my other story about getting looked up and down:
If someone is hitting on me, or even just flirting, I don’t mind if they comment on my body (of course, if they are tasteful and the flirtation is mutual).
But when it’s women and also men - who are not interested - that look me up and down! Grrrrr that really bugs me. It really gets my goat when they literally just scan my body up and down, and then make a comment. I’m like what are you doing? Making notes? Comparing yourself? Why why why do we think this is socially acceptable to do this?
I remember when this woman did it in San Diego. Friend of a friend and she literally just ran her eyes all the way down and then back up. It’s a power move for sure, especially when I wasn’t deemed “skinny enough” for whatever barometer they have in their head.
How do I convey how incredibly dangerous this frame makes me? How my body is doing exactly what it’s supposed to and slowing the metabolism ENOUGH to hang onto what I still have left? I’m doing everything I can, but I MUST move. When I had the pain this weekend, I wasn’t able to eat eggs but STILL had to walk. I likely burned more calories than I ate.
Which, of course, is the goal of many. Which I totally get! It’s not like I haven’t ever felt the frustration over a body that wouldn’t lose a few pounds. Mostly, I find it frustrating from a fashion standpoint. I have a lot of fashion tastes that I’ve rarely indulged mostly because I’m a cheap hippie. Also because who has time for that? I wish I did.
I think about how if someone is working so hard to get food on the table, they don’t really have time to worry about things like thigh gap. That’s not to say there isn’t crossover in demographics. It’s a national obsession, our focus on fitness, nutrition and weight.
Sometimes I get really annoyed about my my ass. I spend seconds on it, and then think: don’t have the bandwidth to worry about this. I need to use every bit of obsessing on my medical case and how the FUCK I’m going to make a living in this country that doesn’t give a rat’s ass about the disabled. I know I'd have every excuse in the book to remain dependent on others.
But that’s not what I want! Not at all.
All I’ve ever wanted is to be an entrepreneur of some kind, but giving back. I’ve been researching different business models for YEARS. Probably a good ten by this point. Even during chemo, I took online courses, studied online education, made notes. It’s what I dream of. To find a way to help people and also to survive? That’s why even as sucky as the last couple of years has been, I’ve felt fortunate that I’ve been able to create content, that’s maybe hopefully helping people in some way.
I don’t know how I can do this. I don’t know how I can do any of this. That mantra started playing louder in my head this weekend when the pain was really bad. Fortunately, I think I moved whatever was stuck.
It was a terrible reminder of those couple of months where it lasted for days. I don’t think the compulsive consumption of those meringue cookies helped. I don’t want to admit it here, or anywhere else. But I need to be accountable. They’re too dry and I can’t just eat a couple of them. The crunch. Oh gd the crunch.
I made a little “salad” which was tasty. I cut up my avocado and added some crumbled goat cheese and pulled balsamic vinaigrette I haven’t used in awhile - something new(ish)! I found these little individual packs of goat cheese with just the right amount I can eat - that way I don’t over-do it but also get some protein and good fats (with Bestie, of course, she is so good at finding random products who would think that talent would end up life-saving, I was telling her last night that she’s a very good scientist, she thought to see how well the protein powder that I think was the culprit this weekend dissolves in a glass of warm and cold water, totally a chemistry experiment, she is not into sciences at all, but I told her that what she’s recommending is determining something called “saturation point” the point at which a solid dissolves in liquid. I was terrible at chemistry, but this I remember. I’m too sloppy for chemistry, and also recipe development, I discovered. I can do it, but it doesn’t come naturally to me, you have to be very scientific and specific when developing recipes, it’s not my jam, I like the freedom of just throwing things in a pot without thinking too hard, those are always my best dishes, I don’t want to have to COMMIT to an actual AMOUNT).
Lord, this reminds me of how I kept the tags on those pants the entire time I was wearing the wrong size. I’ve done it for years. People would comment and say: oh you have the tag still on your cardigan!
I’d look sheepish and tell them: it’s on purpose, I’m not sure if I want to take it back.
On a few pieces of clothing, I’d leave it on for months, maybe even longer. Terrible! What if I wanted to return it? I’d think.
A friend and her grown daughter have been helping me a lot lately. They are the cutest. Both, separately, were fascinated with the fact that I have so many issues around intimacy and commitment. They wanted to know more (listen to my podcast! Even though I have NO idea what I said on it at this point!).
I know for people who are different than me, it’s hard to imagine. I get it. I…I’m well aware that I could make my life so much easier. If i’d stop chasing my dreams.
But on the other hand, every time I’ve tried to get off this path…or delayed it…bad things happen. I know, I know, what happened with my dad isn’t my fault.
Still. Damn now I can’t stop thinking about the goat cheese in the fridge. I try not to have dairy every day. Cow dairy can cause inflammation which is the last thing I need. But I could probably manage goat since it’s not pro-inflammation. More calories! And something I like! A miracle these days. Truly.
I don’t want to do any of this. I don’t want to remember every morning that he is gone.
I don’t want to make my weird meals without him silently sliding around the kitchen doing the same - he can do that, walk right up to you from behind and you don’t feel him at all, it drove my mom nuts, because it was a little weird, my younger brother same thing, I don’t know how they do it, keep their energy so faint that you can’t feel them even when they’re right behind you, you can feel me coming from miles away, I’m sure, silent isn’t really my thing! - still, even as quiet as he could be, or not “feel” him in the house, it feels so empty here without him.
My mom doesn’t sit in the living room anymore. Only the kitchen which is where they often ate, but I guess it feels less lonely. I can’t imagine. I can’t imagine 52 years with someone and then trying to figure out how to carry on.
I remember, in my twenties, having panic attacks at the idea of needing that. I was so scared I’d end up not being able to survive on my own. Seriously! Panic attacks. That’s really the root of that intimacy / commitment problems, I think. Not that I’ll be figuring this out with a therapist any time soon. I think I need a break from that, though I could probably use it. The right person will turn up when they’re supposed to if I’m supposed to work with them. This. I trust.
Why IS it so hard for me to trust? Why do I struggle so much with that commitment issue? I’ve always felt lots of shame, and guilt, because of it. Why does it sound so fucking hard for me to NEED. Ugh!
I call Bestie my wife now. I mean, she is. Came through in so many ways. I can need her. I can need the kids.
I don’t know what else I need now. I didn’t have a regular situation with my dad. In so many ways. I was their little helper for so long. The unmarried daughter that came to the rescue when one of them was in the hospital, or a new baby was born.
I have to listen to my own bullshit, I guess. We’re an interdependent species, I announced on my podcast! And yet, I won’t listen to my own words.
I had Sarah change a light bulb yesterday. Something my dad would normally do. Of course, I lived alone for 15 years. I know how to do it.
It’s just nice to have someone else do it, especially these days when my body is so limited on energy.
I need to be more careful with it. I’ve been running random errands. But sometimes I just need to get out of the house.
I ran into someone at the grocery store. Someone I’ve known my whole life. I have NO idea how he recognized me, with this hair, the glasses. He’d only remember me with long red hair, it’s been so many years. I wasn’t in the mood for chatting, and he clearly hasn’t been on social media much because he was asking questions about my siblings that indicated that. (He didn’t know my brother lived in California where he’s been for 20 years.)
I felt more comfortable with one of the workers who I’ve befriended. He saw my dad just a little while ago, and would always inquire about my parents. It’s just a friends thing, but it was interesting how I kept moving closer and closer to him instead of this person I’d known my whole life who kept asking questions I didn’t want to answer.
Maybe I have changed. Maybe I can need. Maybe I’m slowly getting rid of the intimacy-phobia. I’m so open here. It’s just so hard for me to do it one on one. I can feel it though, the desire to isolate. It’s such an automatic default for me. I was such a mess these last few months. I pushed so many people away. I don’t know how to NOT do it when under duress. And now I have all these people that are saying they can come visit.
I want them to visit. I do. Then I’m so tired. I know I’m still a mess. Just a different mess. I was so angry. I can still feel it. But the grief is so heavy, it presses down on the rage, and the sadness dominates.
It’s hard to be this sad for so long. I tell myself: people will still love you even if you’re not Fun Julie, or Working Julie or Playful Julie, but it’s hard to wrap my head around. It’s so hard to think clearly about anything. I know it’s all so raw now.
I don’t know. I don’t know anything. My entire world view is ONCE again going to shift. I feel like I’ve been in one of those scary kayaks (did I ever share the story of how I almost died in a kayak on the Colorado river? That was a good story, well not good but compelling, my ex would not think it’s a good story at all, I think it changed the entire trajectory of our relationship, he said he thought he killed me when I didn’t bob up above water for however many seconds, afraid his tendency to take those kinds of risks would end up killing me, it changed everything, I don’t think I’ve ever written that, I don’t write about that time much, though so much of it impacted my life, I still have a couple of small scars from smashing against rocks while being dragged under, the rushing rapids pulling me under, me helpless against them, we were never the same after that accident, him thinking he was protecting me by creating distance, not realizing that that wasn’t the way to protect me…how many times have I nearly been dead? More than most, less than some, though probably not Americans or military. I can’t even count. Death. So many people don’t want to talk about it or think about it, and I was studying it as a small child, once I discovered books on near death experiences I wanted to know more. Now I wish I knew none of it. I wish I could go to Costco and watch Game of Thrones and talk about the weather) the kind where it’s a single person and you can turn upside down. The rapids pushing and pulling, giving me no choice but to learn how to paddle HARD and swift.
The others going by me in comfortable steam boats waving, them thinking I’m waving back, when really I’m just padding like a madwoman. I don’t know what’s next around the bend, which rocks or rapids will get me. Or if I’ll make it through. I’m so thankful now that the people are back, cheering me on from the side, the ones who understand that the steamboat is an illusion. The people on the steamboat, continue on, not realizing, up ahead, they have their own risks. I keep trying to holler to them, you’re in danger! You’re in danger! And they wave happily back!
Marv Negrin is dead.
Marv Negrin is dead.
Marv Negrin is dead.
How do any of us wrap our heads around that? That even HE could not survive this fucked medical system?
As the pants keep falling off me. As I squirt whipped cream in my mouth, longing for roasted broccoli.
Someone made a pureed chicken tortilla soup for the shiva. I allowed myself a couple of spoonfuls since it was pureed.. OMG I fucking love chicken tortilla soup. I didn’t eat chicken in my old life, but I’d eat the soup without the chunks of chicken. Poultry has never bothered me that much, I always saw being able to go back to it, even after 20+ years without it.
It’s beef that makes my skin crawl. But here I am, sipping my beef bone broth. My body happy, I can feel it. Helps me go to the bathroom, and I’ll do anything to make that easier.
Two of the delivered jars were in old spaghetti sauce jars. They broke in the freezer so I lost precious meals. Thankfully I transferred the rest to mason jars. I can’t remember if I’ve ever used those spaghetti jars to freeze, but apparently not. Food service, we often have the correct supplies, out of default.
Ok I should stop now. I’m tired. Always tired. I don’t know which rapids will be next. I want to say that they are rated on a scale of 1-5 - sometimes I like not Googling things and making my brain work or being honest about my missing pieces of knowledge damn those phones have made us think strangely I was thinking about how they used to create content that would appeal to our brains, but now it’s the other way around, our brains… I don’t know but I’m going to start researching screen rehab techniques. The kids will need it. We’ll all need it. This stuff always appears so obvious to me, like nutrition in the 90s, but people think I’m weird anyway, even when you track what I’ve done over the years, and SEE how often I was just ahead of the curve, I’m still doubted, maybe because humans are weird like that, probably because of sexism, but then again, there are plenty of dudes that holler too.
I don’t know what number that rapid was on the Colorado river. It was a flat rock that got us. I wanted to get out of the boat, I was done, tired. We each had one foot on land. They just rented us this little boat, and never warned of us anything. The old days. Probably didn’t even sign a detailed waiver. He wanted one more run. He saw some rapids up ahead, so I relented.
Ends up they weren’t really rapids. I was in front, of course, and realized we were gliding across an enormous flat rock and right ahead was a huge overhang with no water, no rock, nothing, just a mini cliff. Too late, I saw it, and hollered before the boat went over, going from horizontal to vertical in probably a matter of a couple of seconds, flipped us right over. My body ended up hugging a rock, and if you’ve never been caught like that in water, weirdly I have several times, I nearly drowned in the 8th grade when my friend and I were on an old-school inter tube, one with the hole in the middle, not the safe kind now which are huge and have no hole, I slid right over, with my leg stuck through the middle, but I couldn’t let go because the water was too strong and pressed me up agains the tube. I kept trying to raise my hand out of the water to alert everyone. Finally, the guys in the boat, THANK GOODNESS, realized I was nowhere to be seen and stopped the boat. How many times can one person almost drown? Geezus, I never noticed that about my life, the time in the ocean in Israel, the boat, and the river. I couldn’t move from the rock at first, my body totally wrapped around it like I was hugging a tree, when I finally broke loose and came up for air, the look on his face…kayakers saw what happened and got us in their boat and somehow how the incredible strength to row us, each one at a time, across the river to the side with the road. They even picked up the boat and we were able to get it down the road. Somehow both he and I managed to hang onto our oars. Didn’t even lose our deposit. Just almost lost our lives. Fuck my life is so fucking weird. People love my life stories. I have so many more. So many. That’s what I wanted! To be an adventurer, when I was home sick as a kid, reading books, it’s all I wanted. Well I got it!
Now, I don’t want that kind of adventure. Not in the least. But it would be nice to travel and eat some fat meals. Or go around the country in an RV! That’s still on the bucket list. I’ve made peace with not flying around the world. I’d like one place in the world that’s just mine now. That’s new. I’d like a space with my own name on the deed that has room for a garden. Don’t care about the size, or if it’s fancy. Just mine with a little land so I can finally grow some shit. Make concoctions. Have an apothecary. Study how to heal with herbs. Medicine is already too expensive.
I must stop. I forgot about that river story. Still that scar on my ankle. We all have scars don’t we? Us humans. We want to think everyone else isn’t as fucked up as we are. Maybe they’re not. Or maybe they are. Maybe that’s all it is. We’ve got to find our own way through the river, alone in our own little boats. We want so badly to grab someone else’s and attach ourselves to it. But ultimately, we can still end up sitting alone eating cereal and watching Turner Classic Movies like my mom.
I read that in a Jonathan Tropper book. A Jewish guy loses his dad, and him and his three complicated siblings get together at the shiva - I related on so many levels - and he sees a neighbor of his mom show up alone. His wife had died.
He wrote: you can do it all right, and still end up alone.
I never forgot that line. I love that author, I tried to read one of his books in recent years, but it was too sad. I love when men write books like that though. Give insight to their experience of the world. Not the academic kind, but the real life stuff.
Ok, I must pee! Though my hands are already really dry. I will need two IV bags today for sure. I’ve been inching up. I don’t want to take that medicine but will likely have to soon. I don’t know how I can get through August without it.