It’s been busy around here. Lots of visits, I had an appointment today which is usually on Tuesdays but my person moved it to today. I have a lovely college kid visiting me and had another high school kid come by to make sure my airbags in my car aren’t recalled! He said he’d take the car in for an oil change when it’s ready.
How wonderful are these children?
It’s interesting to me how so many people treat kids.
Somehow forgetting that they don’t stay kids for very long.
Of course, these ones are very special human beings!!!
I don’t know how I’m doing. That’s the bonus of being around people a lot. I get the allure of not wanting to be alone. I’m just so used to it by this point in my life that I forget how uncomfortable that feels for so many people. I feel bad for my mom. She said either right before he passed away or right after: I’ve never lived alone before I’ve never lived alone before.
This was when we were in a daze and I just stared at her not knowing what to say.
I keep seeing my dad a different way now. I’m hearing these stories, omgosh I love hearing these stories that show a side of him I never knew! Apparently he was coaching people all over the city. There was a guy who used to be kind of heavy - young guy, not even 40 - and somehow my dad got him into running (my parents are together a lot - they work together, drive there together and I asked my mom: when was he making these phone calls and she is like: I have no idea). Apparently my dad invited this guy to walk/run with him at this race that is this weekend.
It’s my friends’ family that hosts this race in honor of their mom who died very young of ovarian cancer. The whole community comes out to support it. My dad has been running it for ages. I was able to walk it until a few years ago. It’s too hot and early for me these days, but I’m lucky that I get to go to the dinner event tonight and see my peeps! Which means this will be short. I’ve had so much company, it’s been lovely. And now tomorrow is busy which I’m not sure how that happened. I wish I had more energy! Oh migosh grieving while already tired, and I like having the company and being busy to forget about how sad things are.
But alas, I’m trying to rest in bed now.
Oh! My story. Well that’s my brain for ya. So apparently, my dad at some point in the last few months - I have to ask this guy because I’m so curious though it sounds like around April which makes sense because he was still walking outside at that point, my Pops asked a guy, 40 years younger? If he wanted to walk with him at the race this weekend - that’s how unlikely he thought he wouldn’t be around. And it wasn’t because my dad didn’t have other people to do this with.
He’d get excited when people got into sports. He truly LOVED working out. This is partly why I’m so quiet about my athletic stuff. I feel like as a woman if I talk about how much I love working out (which I do), I’ll get judged somehow. For bragging. Or whatever. Ugh, being a woman under the Patriarchy is a no-win situation. I can’t be too proud of athletic stuff. I can’t be too loud. I can’t be too this. Too that. All the way around.
If I talk business too much, I’m cold.
If I flirt, I’m a tramp.
If I wear my heart on my sleeve, I’m too emotional.
If I speak out about politics, I’m too MUCH.
I literally had someone - a professional counselor - older woman tell me: Be careful! She’d say: nobody wants the angry activist at a party.
And I’d respond the same way every time: I’m a fucking blast a party. There’s GOOD reason why everyone has a good Julie party story. I know how to dial it down. I know how to converse. I’m in my sessions with practitioners and I let it fly there but I’m paying them money to listen to me rant! That’s the whole purpose - to help me work through all these heavy emotions.
I know they are trying to help.
But I don’t know how to convey my extreme terror at what’s happening in my world. How even these people who are SO lovely, and healers in so many ways, if they can’t see how I’m walking through the streets, shaking people saying: help us! Help us! We are dying! I just buried my dad and more disabled are dying all of the time!! What happened to my dad is happening to so many other marginalized and medically fragile!
We are dying and then people act like I’m being annoying.
I’m so sorry that people dying in my world is interrupting your summer vacation.
I’m sorry! I really am! I’m sorry to be a buzzkill! I’m sorry to be this Voice that I don’t want to be! I’m sorry to be someone that makes people feel uncomfortable! It’s terrible this role I’m in. It’s no-win in so many ways. I’m not posting lifestyle blogging posts. My life is a fucking shit show. It’s a reality tv show, and if people want to change the channel, I get it. But my life continues on whether they watch or not.
I guess it’s incredibly frustrating to feel like I have to dial it down in order to make OTHERS feel comfortable. I can’t help but think: what if I want them to dial UP to make ME feel more comfortable. It’s one reason why I love having my drivers take me to my appointments. Nearly all of them are equally as frustrated about all the bad things happening. They SEE how I’m being treated firsthand.
It’s a horror show in our medical system. I mean, it’s way worse even in the last couple of years.
What happened to my dad…it feels like a gruesome horror movie. I’m walking around dazed, terrified and traumatized. And when I get upset about it, I’m supposed to make sure I make people AROUND me feel comfortable?
This makes no sense to me. I get that all of this is terrifying and scary to hear, and my dad’s death is probably waking people around here up in ways that I can’t imagine.
Probably better than my death would do. I can admit it. I’ve always been the loud rabble rouser, I’ve lived in other places. Sure, it may help a little.
But Marv Negrin dying so quickly!!?!?!?!!? That’s like WHAT THE FUCK? I’m still in shock myself. I can’t imagine if I hadn’t seen it unfold and watched how fast he shrunk into this….
I can’t go into it. It was so awful. It was so so hard to watch. My dad, my strong dad, my inspiration. I mean, he and I didn’t have some ideal movie like relationship. I don’t want to rewrite history here. I try to be open about that sort of thing. We butt heads. We sometimes barely talked (not my choice).
But damn. What happened to him.
I think about how I will die all of the time. I have a list going in my head of ways I definitely do NOT want to go.
Suffocating? High on the list now.
I shared this photo because the fridge has been empty, totally packed, empty, totally packed, and now half-empty for the last couple of weeks.
But nobody removed this little container that he was drinking. I drink huge 32 oz containers of this product per day. My dad didn’t even finish one of these little containers.
Skinny means death, Dad. I didn’t say “dangerous” like I wrote in a former post. I was scared back in March and April, that he wasn’t eating enough.
Now I know.
His body was already breaking down.
We know. We know when we are close to the edge, when organs are breaking down.
It’s maddening when people didn’t believe me when I said I was dying. They acted like I was crying wolf.
I wish I was. So badly.
I’m ok now. I’m STABLE. I can maintain my weight, I’m getting enough calories.
But if something else happens…I just don’t know. I don’t know how bad it is inside me because nobody will tell me. Nobody told my parents how bad the cancer was for MONTHS.
It’s all so scary. I have good docs now. But I have all this guilt and shame that I didn’t help my dad more. Even though lung cancer….you just don’t want a cancer that a) you can’t screen b) is housed in bodily fluids - the cancer cells can then get into the lymph system too quickly.
That’s why lung, pancreatic, and ovarian are often so bad. They rarely get found in time (WHY IS THERE NO GOOD SCREENING FOR OVARIAN HELLO sexist medical system) and by then, it’s too late, it’s spread too far.
I don’t know. I need to go get ready. I feel sad again, thinking about all this. But I know I must FEEL the FEELINGS or they get trapped and that’s no good either.
I just want him back. Even though he turned the tv up way too loud (it was maddening), and was super anal about the kitchen (if you’ve ever worked with me or spent time with me in a kitchen, you know that ME saying HE was anal is almost laughable - I’m pretty anal about hygiene and all that!).
It turns out my mom and I are kind of messy roommates.
I like to clean ok, but I’m tired and somehow ended up spending several hours doing shit around the house. What am I doing? I ask myself every night, but there are things that need to get done, and if I have appointments or sleeping a lot the next day, then so much gets backed up and doesn’t get done, then the list piles up.
Thank goodness for the people who have been helping out. I seriously wonder if I’ll lose my mind from all of this.
I don’t want to but…well, for now, I’m hanging in there. I’m very proud of how I got my diet back up to decent calorie intake AND better quality than even before. I haven’t had the trader joe cookies since the day my dad died 2 weeks ago. I didn’t buy Oreos when I ran into Target for some other meds last night. If I’m not starving, I don’t want that shit anyway.
Donut frosting is still in the picture. But from the hippie health food store at least.
I’m doing my best! I know my dad would want me to try to stick around, even though he knew by the end, how fucking hard it is. Between the lungs that weren’t working, no stomach and most of his colon gone, I have no idea how he managed all these months.
Most people would not have survived. I’ve got to get dressed and do make-up. Putting on make-up is good for my mental health. I look in the mirror and I’m like Oh yeah! I’m still a regular human being. Maybe I’ll even wear a dress.
I know it’s good for me to DO things but it’s going to take awhile for it to feel like a normal thing to do. Hell my whole life has been not normal for so long!!!!!
Ahh well. Friends are important and I get to see some soon. Shit! I’m supposed to leave in 15 minutes. Blerg.
Me and my writing.