Trying to stay positive 5.22.19

Sometimes I torture myself and take photos of things I really, really REALLY want to eat. This is from the farmer’s market in Oregon! I wish I could stress eat!!!!!

Sometimes I torture myself and take photos of things I really, really REALLY want to eat. This is from the farmer’s market in Oregon! I wish I could stress eat!!!!!

I feel like I’ve been on a merry-go-round for five years. Sometimes it’s slowed down enough that I thought I was going to be able to jump off!

Then it speeds back up again with a new medical crisis, a family emergency, a political disaster. I keep spinning and spinning…. It was a challenge at first - like being on a bucking bronco. Can I manage this? Can I hang on? Can I keep going?

Now I can skim across the top of the merry-go-round while it’s at top speed, jump over to my dad’s merry-go-round, try to help him best I can, then jump back to mine.

I can’t jump into any political stuff right now, even though it’s painful to stay out of things. I’m really disappointed in the Left. The arguing, the ego, this weird tendency for so many to assume that they * know * best when they have zero community organizing experience, aren’t marginalized and just spit out stupid comments all day on social media.

It makes me not want to belong to any political party. Of course, I will do what needs to be done and vote D all the way, no matter who is on the ticket.

Why am I talking about this? WHYYYYYYYY?

Because, honestly, I’m a little bit irritated. I’m super frustrated that I hollered and hollered for so long, and got pat on the head.

Now, my dad is LITERALLY dying - like out of the horse’s mouth today from the doctors, I can’t get into the details because it’s so upsetting and it was a major fuck up on so many levels, basically cancer is in there, they will have to start chemo, but he is so weak and on oxygen now, I almost wish they’d started chemo in the first place, the immunotherapy made him sicker, it’s not their fault about that part, it CAN work wonders, it just didn’t for him, I guess I do want to talk about it, but not with any real grammatical rules, how do I make sense of this? I should have known! I should not have let them make him a guinea pig. We should have gone straight to chemo….now. He’s so skinny. He’s on oxygen. He has pulmonary embolisms. He has inflamed lungs. He may have an infection in there.

He was at Crossfit as recently as this fall.

And he kept going into the doctor and telling him that he was getting worse.

This is the problem for me and him. We are SO strong on the outside, but have SO many issues far beneath the outer layers, that it takes a LONG time for the outside to reflect how sick we are on the inside. I haven’t shared any full body shots of him or me.

I don’t look the same as I did a year ago - and no, it’s not * normal * aging, fuck I hate when people try to say they understand my situation. I keep it together, but in my mind, I’m like can we not do that. Don’t say: I know how that goes! I understand completely! I have the same problem! to a medically fragile person.

It’s like being a white person saying to a black person, I totally know what that feels like to be discriminated against for skin color!

Yes, it sounds that ridiculous as a medically fragile person.

I see how incredibly exhausting and toxic it is to have to explain these things over and over and over again. Able bodied have so much more bandwidth, which frankly, I feel they use to an unfair advantage. I can’t do the long argumentative threads anymore. I need that bandwidth to keep myself alive. It seems to me that it’s often the most privileged who have the MOST time to talk smack on the Internet.

The rest of us are trying to stay alive. If i hear ONE more person diss the sex strike idea WHEN THEY HAVE ZERO COMMUNITY ORGANIZING EXPERIENCE and clearly don’t understand the tenets of NON-VIOLENT RESISTANCE, I don’t know what I’ll do.

It is so maddening to hear people talk smack over and over again - in such arrogant ways - which I can handle ok. But when they patronize me and assume I AM THE IDIOT, when they are one who is uninformed (see how kind I’m trying to be back, I hate name calling).

To see this happening around me, online, in DC, and then listen to my dad’s doctor blame all of his current symptoms on the cancer, clearly not wanting to blame the immunotherapy drug - which obviously is PART of the problem here - ugh, it makes me not trust anything else he is saying. Yet, if I challenge someone like that, they try to turn it around and make it seem like I’m the moron.

It’s a tactic so often used by the GOP, and now I see Democrats doing it to each other, maybe unaware that they are? Is it just such a common “fighting” tactic online that people assume it’s “ok” to do?

Or have people that subscribe to the Patriarchy always use patronizing and dismissiveness to gain leverage over someone who is challenging their bullshit?

I think probably the latter, but I don’t even know what I’m writing anymore. Bestie just texted and was like: you must be so exhausted.

I responded that I’m too agitated to feel tired. But now I can feel my brain just stop. The spinning, the worrying, the stress, the aggravation (ok if you don’t like the sex strike, whatever, it’s not about actually fucking people or not, it’s about strategy and controlling the narrative, and using the whole thing to create a social media strategy, why is this so hard for people to understand, that’s one thing, but more than that, why do they patronize someone like me that’s had ACTUAL success with campaigns, in the Food movement and the last few years? Where is the trust? Or respect? Or do we not do that anymore in our culture, because it’s all fake news? WHy can’t I stop this thread of writing? How do I focus on my dad’s case? And mine because tomorrow I meet with one of my NDs and we’ve GOT to review my nutrient levels, otherwise, I’ll slide downward again sooner than later. This is the spinning, it’s like tossing a whole bunch of plates in the air, except it’s not a plate that will break it’s LIFE and that’s why it’s so so maddening to watch a bunch of Democratic liberals arguing about STUPID SHIT on the Internet while so many of us that are scared we aren’t going to SURVIVE this administration NEED the able bodied to help, ok then fine do another campaign! Don’t care at this point! Just do SOMETHING). I’m so tired. My hair hurts (great line from sex in the city).

I need to walk. I need to figure some shit out. I need to figure out how we are going to keep my dad alive. I’m giving everyone in the family The Talk. Dad’s had a lot of luck, nine lives and all that. He’s AT number nine now. There is no room for error now. He needs to get more nutrients in an IV, he needs frequent IV saline - he has been too dehydrated and is also missing most of his colon so that’s going to be an issue. He needs to decide if he wants me to get him IV Vitamin C for a couple of weeks before chemo, to strengthen his immune system and see if it can shrink the cancer. Won’t hurt him, but dang, getting those doctors to delay chemo now…that they waited so long!!!

We need to get him to put on at LEAST 5, if not 10 pounds. Chemo could be the thing that kills him. He’s got to decide if he is done with treatment. I doubt he will do that, but he’s got to understand that this round of treatment could destroy what’s left of his immune system.

It’s such a heavy weight to bear. And it’s especially hard when my family doesn’t often appreciate what I do. Look what happened when I took a few months off to focus on my own deteriorating health!

Poor guy. My dad and I butt heads all the time, but it’s only because we are so similar. We both know we love each other. I can’t even think about how I’ll survive if he doesn’t make it. I can’t go there. I’m just so worried about him at this point, I’ll figure out that other stuff later. Doesn’t help my anxiety though.

I wonder if he is even comprehending everything since his cognitive sometimes seems off since the stroke. Ok, let’s face it, sometimes he just seems spacey and that’s him! But truly, my mom and I wonder sometimes what, if anything, has changed about his brain power.

I know what I’ve been through has impacted my cognitive function SO much. Oh gd, chemo, how will he withstand it. Can’t think about it now. Will get to my appointment tomorrow, and go over my latest labs, and start to titrate my IV nutrient intake. I LOVE my new doctor - omg, she is the DREAM. They will advocate for me to get the estrogen patches covered by Medicare! I asked ONCE and they said YES, no PROBLEM.

My other doctor didn’t even bother writing me back when I asked for help with this. And she is one of the good ones.

I fix myself. I can’t help my dad unless I’m as strong as I can be.

I’m sure my writing in here is terrible. It was very sweet, one of my three readers texted me today saying she saw that my dad was in the hospital. Well, I guess this reveals the true analytics, right? She is the only one who reached out to me. Of course, she is going through chemo right now!!

Why is that? Why is it the poorest that often donate the most?

The ones who have been beaten badly the most who are the most tender and compassionate?

The ones who have been neglected, or had a mental breakdown, that are the most sensitive to my situation?

Why do we have to suffer in order to develop deep empathy?

And how do we inspire people to develop empathy without having to go through something traumatic? How do we get kids to really FEEL for others? How much of being empathic and compassionate is intrinsic? Nature versus nurture?

I have to move this body before it gets too late. I’m going to walk outside, my head needs it. My neck is so tense. Looking forward to stretching.

Please think kindly of my pops. He is only 74. Not so young. But definitely not old. So many don’t get that this is how it goes. One big hit, and then the body slides downward. This is what I’ve been trying to stave off for myself for so long….

Let’s see if we can pull this out, Negrin style. I feel like it’s time for me to give him the Rocky talk. I’ve been waiting. The Rocky talk is: you’re going to lay in this bed or are you going to fight? The choice is yours, but you can’t get better unless you TRY.

We shall see. It’s hard to do it with an old frail looking man, I’m finding. It was easier when he was stronger and being stubborn about something. Now, he just stares at the sports games on TV, unsure I think, if it’s time to go or not.

I don’t feel it is. He says he’s not ready.

So let the Fight begin. Damn, I’m tired of all this.

Go ahead able-bodied people!! Go ahead on all your summer vacations, while less than 5% of the population helps save democracy - thank goodness for that demographic THANK FUCKING GOODNESS.

Good night.

Much love,

Jules