My head is spinning 5.28.19

baby feather

baby feather

I feel like I’ve been in a huge sink and the water is swirling around me, while I fight the current, desperately trying to swim away from the drain. Kicking my legs, gasping for air, trying so hard to not sink down into the depths of murky waters threatening to drag me under.

I try to swim to my dad who is on the other side of the sink. But I don’t think I’m going to get to him in time….

I don’t know what will happen if he isn’t there, what will happen to my mind. What will happen to my spirit. What will happen to my own Will to Live.

It’s not the fucking dish towels I’m worried about having to do, even though I write about that silly stuff here. It’s so much bigger than that, I can’t even find words to explain it. It’s not typical, this arrangement. I should be living in my own place, living on my own salary, able bodied and pitching in to help him as much as possible.

Instead, I can’t stop sleeping. The hospital visits are so exhausting even when I’m not doing much there. I took only a few months off from his appointments, because I was in such bad shape. And look what happened. I feel like I have to stay hyper-vigilant with this case, but I’m not able to and it’s so frustrating.

It’s not his time. I know that deep down. If it was, it would still be upsetting. But it’s not right, what happened to him. If this happened to him, then what about the people who aren’t male and white and Jewish and live on Mercer Island??

Do the people who voted GOP in 2016 understand that their vote is killing people? That the medical system is broken beyond repair? That so much of our country is broken beyond repair? That medically fragile are likely dying all over the country? We are in a “good” city for healthcare!

I can’t believe what I wrote on Facebook yesterday. Of course, it’s understandable that I’m freaking out. But still. Even for me, it was pretty harsh. I can’t help myself anymore. I can’t hold it in, my frustration, my disappointment, my fury at the medical system for failing my dad, who did his part.

He’s always done his part.

I don’t know how I’m going to survive watching him continue to decline. I don’t know how I can keep drinking my gross drinks. I haven’t eaten much lately, which I know isn’t a good thing. I don’t have much wiggle room anymore.

How are we going to survive? I didn’t move fast enough. I was so scared. I let my fear hold me back from pushing my work out earlier. I’ve let my fear rule so many decisions in my life, I don’t want to live that way anymore. I know people don’t think of me as a scared person, but the reality is that I’m always scared. Just because I do scary shit doesn’t mean I’m not terrified all of the time.

I only do what I do because I made a promise a long time ago that I would. It was part of an agreement. And I can’t not honor that agreement.

But I don’t want to do any of this anymore. I don’t want to watch him suffer. I don’t want to eat like this anymore. I don’t want to spend half my week in bed. I don’t want to be hungry all of the time.

Don’t worry, I won’t do anything to myself. I’d never do that. I’d never leave those children like that. That would be too hard on their mental health.

I am struggling though. The denial around me….it’s almost worse than anything else.

The system beats you down so hard. It keeps beating, beating, beating, and then able bodied person walks by while I’m bloodied, curled up in a ball on the floor, licking my wounds and they act like I’m not laying there bloodied and petrified of what’s coming next.

Just talking about things like it’s a normal day, while I moan and try to find a comfortable position.

I act the slightest bit grumpy or bitchy or whatever, and they’re like: what? what’s wrong with you? suck it up!

Not exactly like that, but that’s essentially how it comes through.

I just emailed my editor and told him no podcast this week. I can’t even get my brain to focus on that.

I realize this isn’t about me right now. I get that. But of course, I can’t help but wonder if what I’m seeing my dad go through is what it’s in store for me. If I get even one cancer at this point for me…

I have a colonoscopy on June 20. I don’t know what I’d do if they found anything. Not sure my mind could take it.

Not sure if my mind can even take what’s happening right now.

I’m thinking about pitching a piece to Huffington Post: I felt suicidal this winter and this is the reaction I got for the Personal Voices section.

It’s a fucked up world. That is for sure. I know this must be hard for people to read and hear, but I can’t not share it. It’s what’s happening in my world.

I’m a tough cookie, and even I can’t handle the system in this country. That says a lot. I admire the disabled people I follow so much. How do they do it? How do they handle insensitive people? How do they cope with dismissive doctors?

I feel sick, but I know I’m not. I just have that nausea and feeling like I’m going to throw up, but it’s just from what’s happening.

When my thoughts get really dark, I think of the kids. I imagine them doing some activity that they enjoy. I imagine myself laughing with them, and that helps. They are so big now. They understand so much. How can the make sense of any of this? When I barely can?

I’ve been crying the whole time I’m writing this, of course.

Maybe I am getting something. I don’t know. I don’t feel good, that’s for sure. There’s no time for that. I have to start eating more. I can’t afford to get weak. Weaker than I already am. When I’m all right, I realize, it can be tricky for people to understand how the next day, I can’t get out of bed. It was so warm yesterday, I felt like shit.

I don’t know how I’m going to survive this summer. Stupid climate change. Humans. Not such a fan right now.

What have we done? What kind of future have we given the kids?

I need to get get up and get dressed for my Tuesday appt. I really want to see my dad later, just need to find some energy. Not eating doesn’t help with my energy.

How am I going to do this? He’s going to come home soon, and then a lot of the care will be on my mom and me. We’ll get home health, but he’ll have to have machinery for the oxygen. Do we even try chemo? Or just let him enjoy the time he has left?

I didn’t know. I had no idea this would happen to him. I did have a dream around the time he had colon cancer. I was with my San Diego friends and my mom, crying because he was gone.

That was when I figured out that he wasn’t absorbing the oral antibiotics without a stomach. He had an infection in the wound where they took out the colon. And the antibiotics weren’t working.

Not the doctors. Not a nurse.

It was me that figured out that he needed to get the antibiotics via shots or IV. They are so casual with a man who is missing his stomach and so much of his GI! He’s just been so strong all this time.

But even the strongest can get too many hits.

I guess that’s why I’ve been freaking out all of this time when people didn’t believe me about my situation. I’ve been trending the wrong direction for so long.

So the feather. What’s up with it? Bestie and I have a thing about feathers. When I had a life and walked around a city more, I’d see them all of the time. Not that weird. But I’d go through periods where I’d see them a ton, other times none.

I haven’t seen any in a long time.

I found this baby one outside the house. Normally, I’d never bring it into my space (ew! dirty feathers! gross, so unhygienic), but this one made me feel hopeful because I found it after my trip to Oregon while walking into the house.

I’m not feeling so hopeful now.

On top of everything else, having to worry about surviving in this gd forsaken country that doesn’t take care of it’s sick and disabled. My therapist is from the Netherlands (apparently, I’m not supposed to call it Holland anymore). She’s been here a long time but goes home to see family.

She said that in her country, I’d be given an apartment. It wouldn’t be the most beautiful place. But it would be clean and my own. The country would take care of me.

Not here. Here, I have to worry, worry, worry. Or get married like it’s 1850! The Patriarchy is certainly not going down without a significant fight.

It only took two generations! I am pretty proud of that.

The Patriarchy has been in charge for 10,000 years. Women and minorities get some economic power, and here we are.

I should find something to eat before I get in the car. Thankfully, I have a ride today. Then, Sarah helps me for a bit and I will run to the hospital to see my dad. I called him this morning. He was so congenial. That’s super weird. I’m like: Be grumpy! What are you doing?

But he knows. He knows he got a lot of good years for being in this family, who also have this condition. Less than others. Listening to a pretty song, the words are “The darkness will be rewritten into a work of fiction, you’ll see.” We shall see.

I don’t feel so good. I should get my blood sugar up. I usually make myself eat broth and avocado on my no-egg days but yesterday, I didn’t have any of that. That’s the second time I’ve done that recently and I feel super shitty the day after, so no more skipping broth and avocado. I’m just so tired of avocado! I started to gag a tiny bit on the broth the other day.

And I’m like oh no!! Not the broth! Not the eggs!

Ok time to get up and act like a regular person.

Whoever is actually reading this: thank you. Thank you for * seeing * me and bearing witness to this shitshow of a life I lead.

You know it’s bad when even the editors at a site like the Mighty are feeling bad for you. My contact has been absolutely lovely. A lot of people have a LOT of health problems on that site so…yeah.

I’ll put my pants on, one leg at a time. That’s all I can do.

Much love,

Jules