The magic cloth is awesome 6.10.19

I got these great sponges this weekend because I’m trying really hard to reduce my waste, and not use as many paper towels. Now that I have all those medical supplies junking up landfills, I’m determined to find other ways to lower my waste. This is what everyone should be doing, especially if they fly a lot. If anyone is even reading here, I’m going to insert ways to save the planet! She’s EVERYONE’S home.

I got these great sponges this weekend because I’m trying really hard to reduce my waste, and not use as many paper towels. Now that I have all those medical supplies junking up landfills, I’m determined to find other ways to lower my waste. This is what everyone should be doing, especially if they fly a lot. If anyone is even reading here, I’m going to insert ways to save the planet! She’s EVERYONE’S home.

I thought I understood a broken heart.

I really did. I thought I knew what it was like to pick up millions of shards scattered around farther than I would have thought they’d fly (how does glass do that by the way? My curiosity….).

I thought I knew how deep the pain could go. When losing one person.

Not even close. To having your heart broken by a group of people.

I have no idea if anyone is reading here.

I don’t think I want to know. Easier for me right now. Though, I have accepted that eventually I’ll need to engage again. Right now, I have to just spit content out, get it out of my mind, my heart, my soul.

If it all sits inside me, it will crush me.

At the very least, the burden is being carried by others along with me, instead of just me.

And for that, I’m very grateful. The weight of all of this…I don’t know. I don’t know how I keep going. I really don’t.

I guess that’s how it works. We give some of ourselves, in exchange for the support. I’ve been independent for so much of my life. To know I need so much now, it’s hard on me.

My dad was too tired yesterday to do exercises.

For anyone that doesn’t know him, that sentence is wrong on so many levels.

The visiting is so important for his mental health but the exercises….

I don’t know. Maybe it’s better if he just does what he wants all of the time now. I can’t tell how long we have. Could be days if that clot doesn’t cooperate. Could be weeks. Could be months.

I’m losing hope for any more of that. I think we all are.

His mom had four cancers and made it all the way to 88. He’s only 74. He’ll be 75 in a few weeks. We haven’t even planned anything and now, I wish we had.

I don’t want to do any of this anymore.

I want to wake up in 2008 and make a million different decisions. I want to go traveling with my nest egg. Fuck the book. I know it was a huge dream of mine but I have such a love-hate relationship with that fucking cookbook. I’m so proud of it, still. It turned out great and people actually use it.

But I regret investing so much of my life, my savings, my health….

If I’d known.

Fuck.

How could I have ever anticipated anything like this. That’s what bestie always reminds of. She reminds me that what happened to me is like a freak accident. When I start lamenting not working in corporate. Socking a ton away, and then doing what I love.

I don’t know if I could have done it.

I would have kept feeling tugged in another direction. (But I’d have a big ass bank account.)

I’d make an agreement a long time ago. That I would serve. That I would serve my community.

Weird isn’t it? So many families hired me to cook with their kids, they fucking loved it. I taught their kids manners, and how to feed themselves.

But now I wonder how many of those families vote to support programs that exist for people like me.

I feel like I’m being punished, on some level I probably am.

For not marrying. For not having kids. For not following the script.

It’s this creepy undertone I feel all of the time.

See? See this is what happens when you go off-script! This is what happens when you buck the norms, and step out of line!

Instead of thinking of it in the context of how many indigenous communities function. Someone like me, that cares for the children and does all this unpaid labor, is taken care of when they get sick.

Everyone is important. Whether they’re trading stocks or taking care of children.

Our culture is so fucked up.

People on get so upset with how things played out.

How did we end up with a selfish, greedy guy in office? HOW COULD THAT POSSIBLY HAPPEN?

I want to write something on Facebook today that’s public. I never followed up that way. I want to explain that we’re all drops in the ocean. That each individual is both unimportant in the grand scheme of things. And each individual is also a unique and crucial part of the tapestry. Shit none of that makes sense.

What I’m trying to say - and saying very badly - is that we’re not that special. Not special in the way we THINK we are. Our individual opinions about who should be on the ticket is not important.

How we serve the greater good is very important. I want to find ways to explain this to the kids. It’s not discussed. They’re just told their special, without enough explanation which is confusing. Why do I get a trophy? For showing up for some soccer games?

How do we cultivate a culture where we teach our children that they have a special role in the larger picture of things? How do we shift the needle so that we’re focused on thinking about the greater good as important, or more so, than our individual needs? Or at the very least, to consider the greater good when making important decisions.

Can we even do that? Is it hopeless?

I guess that’s why I’m having such a hard time. I’m feeling hopeless. Watching my dad….

After this winter.

I still have the mottling on my stomach. My face is clearing up from the antibiotics and get this: my stomach LIKES being on the antibiotics. I think there’s been an infection brewing in my intestines since February. I may have to take this strong drug a couple of times per year to clean it out anything brewing. It makes sense. There are so many twist and turns in my intestines. Food will get stuck.

Ah! Now I remember the last time I was on antibiotics! Geezus, that took several DAYS to recall.

Dang, that’s annoying. I was going over this with my mom and I said: I was on antibiotics for something else and my stomach also seemed to like it. I felt so much better after being on them, but I can’t remember what it was even for.

The port infection during the ACA roadtrip. Damn. That’s what it was. That’s sad. She couldn’t remember either.

Of course, neither of us are working with full powered cylinders right now.

His physical therapist will be here in a few minutes so I’ll go join that. I want to find out how much he can exercise. I feel like there’s still a small chance we could pull this back and give him, at the very least, some extra time.

The question is: whether he wants that time.

A family friend of ours got diagnosed with a cancer, or two. They seem to have some gene. There are two families in the community that have had multiple cancers show up in one person. There must be another gene, or a few probably, that does something similar to Lynch.

She’d always been healthy, this woman. Her mom was one of those rare health-nuts in the 1950s and 1960s. This woman was my parents age, a good, good friend. I had my own relationship with her, and all of her kids. I grew up with them.

She wanted to give up fairly soon after her diagnosis, within months.

The kids called me to come to the hospital and convince her to eat.

I did.

She did.

They profusely thanked me.

As her case worsened, she was done though. She didn’t want to do it. She didn’t want to do everything that’s necessary in this fucked up country to stay alive. Deal with these obstinate doctors. Beg for referrals. Haggle with Medicare.

I get it. I get not wanting to do all of that.

I also see what’s happening with my dad, and how it’s hard on people who have always been healthy. That’s the thing I think a lot of people don’t realize. He had almost 70 really good years. He didn’t get his first cancer until 68/69.

All those years of being sick at a young age gave me survival skills. Taught me what to do. How to fight.

When it hasn’t been super tough for too many years, it’s hard to figure that out. Especially as fast as necessary.

I’ve been told that by multiple people: you’re good at getting through crisis.

I guess. I never understand when people say shit like: omg I hate needles! I could never do what you’re doing!

I always think: you don’t know. You don’t know what you’re capable of until it happens.

Several people have said: I couldn’t do what you’re doing.

I never know what to make of it. Is it really a compliment? Or, is there buried in there, some able-ism.

The subtle: life isn’t worth living if I had to live like you.

My friend died about a year after diagnosis. She stopped eating.

My dad is too skinny. Especially for the doses of prednisone he is on. It kicks up the appetite. I know, because I’ve been on it a LOT (it’s probably why I have the chronic dehydration and need the IV bags - the doctors always say: oh oh we don’t give prednisone to GI patients like they did to you back then. And i’m like: no shit sherlock, because it causes so many long-term problems LIKE I HAVE NOW.)

Did I tell you that I ended up getting my estrogen patches for $35 instead of $60? You know why? I called and talked to the pharmacist and explained my situation. I built a relationship. Funny how that still works in this world.

In the end, I think she took pity on me and let me use the coupon. That, or the coupon was always valid.

After I picked it up - with a friend, I think it’s better that way in case I need someone to help me advocate - I said to the woman who gave me the patches: so can I use the coupon again next month?

Oh no, she said, that’s one time only.

My friend muttered as we drove away, just keep doing it.

And I said: hell yeah! Fucking corporations.

As if some asshole at the top needs my $25. That’s the whole fucked up thing about it.

Taking money from the poor to pad the pockets of people who don’t even need our fucking money. Literally DO NOT NEED.

I wonder all the time: what can you even buy after you collect a certain amount? Is it just a pissing contest in the end? I’m worth 7 billion. Well, I’m worth 7.5 hahahah! Fuck you asshole! Now let’s go play some golf!

How many cars, houses, boats, junk can one household own? Why is this SO revered in our culture?

I’m weird that way. I don’t know why it’s never been important to me.

I never finished explaining about not wanting to be known yesterday. I see that I do that. I start a train of thought and then go on another tangent. This is my brain, people! Especially these days, circles and tangents and runways and tracks, paths, roads. All the words I use to explain how this weird brain works.

I realize now, I didn’t need to be famous. That was never the goal.

In fact, my dream was to have a career like Mollie Katzen. Who is a Facebook friend, which I’m VERY proud of. I love her. She was just in cool in person as you’d want your hero to be.

I wanted to write cookbooks, be a writer, develop recipes. My face only on the back of the book jacket, in a small little photo. Ok, I wanted the name recognition. I liked the idea of that. But I could walk around and still just be me. I liked the idea of being able to write a check to help people. Have some LEVERAGE in the world.

THAT is what I wanted.

The fucking Internet. That I’m using as I type this! I love it and hate it, like everyone else.

It’s both the worst, and the best.

Technology. Forcing someone like me to put my face out there, if I want to be heard.

I had one friend say: the other side is just so LOUD.

I responded: that’s why I’m so loud. Because I’m willing to do that job. I’m good at being loud.

I’ll be the designated asshole. That stands up first and says THE EMPEROR IS BUCK FUCKING NAKED PEOPLE. Stop, stop, stoooooop pretending like he isn’t!

Nobody tells you the truth, when you’re a kid.

That being the one that breaks away from the crowd, or at least, one of the first, and speaks the truth, is hell. Sure, I’ll have a nice obit. Maybe even someone will finish curating my content for me. (Please, someone finish curating my content. I realize that if I die, all this content will disappear if my Squarespace and GoDaddy accounts aren’t paid for. Ugh. They really need to have a “in case I die” clause.)

I don’t know what to do next. I’m paralyzed at what’s happening in slow motion and fast motion and medium motion and it’s just in motion to my dad.

This one time, one of my nieces was in a high chair. I was visiting and sitting maybe three, four feet away. The tray wasn’t in front of her for some reason, probably just removed to be washed?

I’m staring right at her, talking to her, and watched her unbuckle that little belt.

I have a LOT of experience moving quickly to stop kids from hurting themselves.

But even I couldn’t move fast enough to catch her.

I watched the whole thing unfold, helplessly watching as she fell forward onto her face on the ground. She must have been around 2 years old. Screamed bloody murder, of course.

Oh, the pain of watching a loved one hurt.

I used to think I was so smart locking my heart down. I had so much happen to it at such young ages. By the time my peers were looking around, I had the mindset of a much older woman. So jaded.

Now. I’m glad. I’m glad I’ve had my heart broken so badly. First of all, it’s part of being ALIVE. My goodness, the time I’ve lost being afraid of being hurt. Now my whole life hurts. You can run, but you CAN NOT HIDE from the hurt. It finds you. It’s part of being human.

I remember seeing one video with Claire Wineland, who died at only 21 years old from cystic fibrosis (if you don’t know her, check her out on youtube, worth the watch, I love that she lives on that way, I can still listen to her).

She talked about how she wanted to fall in love before she died.

Oh, that broke my heart on so many levels.

I’ve lived a lot. I have this wall where I posted photos from my life. It started as a way for me to be able to find the good photos - which then led to putting up a million notes to myself which thankfully, are now gone. The clean walls are better for my mind). But then, it turned into a cool art installation. My life. When I’m doing my stretches, I look up and can remember all the good living I’ve done.

We had a good run, humans. Especially my generation. No major war impacting us. So much abundance. No major scars.

But it’s the scars that make us human. It’s the scars that make us compassionate.

It’s the scars that make us CARING.

It’s the hard times that help us get through more hard times.

It’s the broken hearts that help us cope with more broken hearts.

I never thought a heart could be broken by a group of people. I didn’t know that was even possible.

Turns out, it can.

I’ve got to go. The PT must be here. This house is so big, I can’t hear much. Especially not with the oxygen machine whirring above this room. So I’m not sure she is even here. But it’s time.

I also didn’t know that you basically get a broken heart every time a loved one dies.

I didn’t understand that.

That we can hide, and lock it down, all we want.

But the broken hearts will find us eventually.

I guess I’m finally ok with that. It means we love.

I know what it’s like to keep it out. I did for so many years. Except the kids, of course. They can crawl in there, bang around. Because they also expand it, and soothe it too, much more than they cause any damage. Though, I suppose, eventually a child can break a heart. If they go down a road that they can’t come back from.

That would definitely break my heart.

I’ve told the kids since they were small. I always have your back. No matter what.

Not realizing, at the time, that I was saying all the things I wished I’d heard. Or maybe I did? I don’t remember. I do know that in the end, I have people at my back.

It’s just… I don’t know. There are conditions. Conditions I didn’t necessarily want to agree to.

I told the kids: I won’t be thrilled if you become a serial murderer but I’ll be there, right at your back, in court. I’ll never walk away. You can become anything, be anyone, love anyone, do whatever you want for work, just make sure it doesn’t hurt the planet or anyone else, and go for it. I’ve got you.

Unconditional love. Is it really possible as an adult?

I have no idea.

I just know those kids. Have taught me so much. I’ve had a lot in this life. I really have had some amazing experiences.

Oh, don’t worry. I’m getting maudlin, but I’ll keep fighting. I’ll drink my gross drinks. Do my exercises.

There’s some pop song, I have no idea by who. Ok, that’s a lie, and I promised not to lie. I think his name is Sean Mendez but I’m embarrassed I know that. It’s not in my blood or something. The song is about not being ABLE to give up.

I’m not looking it up.

Sometimes I think we’re TOO quick to look things up. It’s making our brains dull.

I’m sure me googling a pop singer isn’t the main culprit slowing my brain down, but this is what I tell myself.

It’s so easy to tell ourselves a narrative. And believe it.

Even when it’s not true.

I get that it’s part of survival. And that denial is how we cope.

I get it. It’s a fucked up coping mechanism, but I get it.

I went for a walk last night. I don’t have much longer before the evenings will be too hot. It didn’t used to be that way. Summer was very mild in Seattle.

No more.

There was some dunce watering his lawn. I’ve been trying to think of cute little signs I could put on people’s lawns as I walk around saying “hey neighbor, please conserve water.”

Traditionally handsome guy, super tall.

I couldn’t help myself. I can never help myself. Sometimes things pop out of my mouth and I’m like: what the fuck Julie SHUT UP. Too late.

I said with a big smile: you’re going to use less of that in the summer right? (WHICH IS IN LIKE 10 days! HELLO).

The people who watch news that’s not true, they watch not because they believe anything they’re hearing. I see that now.

They watch because they WANT to believe it. They want redemption. They want to believe they’re not the problem.

They want to believe they’re good people.

That their lives, the way they’re living them, isn’t hurting anyone.

That they can use as much water as they want. Just because. Which I realize is being done by a lot of people, regardless of their political ideology.

This guy flashed a smile, clearly not expecting me to say that, this little random woman with a mohawk walking around. This is right by the high school - I live so close to it that my nephew parks at our house and walks there. It’s in large part why we always had so many kids over when I was young.

That, and because we always had a lot of food. That’s the key! No food, no teenagers.

The ping pong table helped.

I gave it away last weekend. We’ve had it since I was around 12 years old. When we started doing better financially. Only my older brother and I remember the scarce years.

I thought I’d be sad to see it go.

I put it on one of those buy nothing groups on FB and it was gone within the hour. I still have people asking me for it. I asked my dad later: the ping pong table was in good condition, wasn’t it? (Ooops)

Or was it my mom. Anyway, one of them said: it was a little funky when it’s open, but overall pretty good.

So many things that ping pong table has seen.

Anyway, the tall guy just smiles and says: yeah.

I don’t even think he got what I was saying.

In Seattle, you can compost really easily now. You just put into your yard waste! And still…the amount of houses I’ve been in now where I automatically say: where’s your compost? I get blank stares and then: oh, yeah, we don’t do that.

I have to hold in my WHAT THE HELL WHY NOT OMG IT’S LIKE THE EASIEST THING EVER. And then I can’t help myself, I pay attention as to whether or not they recycle.

My dad’s business is basically based on recycling. He buys gently or unused boxes from companies very cheaply and then sells them really cheaply to small business owners who don’t care what the label says.

We were recycling for YEARS before anyone else. We’ve had two garbage cans in every room in the house for as long as I can remember. One is white for recycling and the other, another color.

It’s been ingrained in me since I was small. Because of my dad. So that’s why I’m sharing the cool product in my photo. I figure if anyone IS reading, then I’m going to do some plugs for the planet.

One of my friend’s kids hurt herself badly a little over a week ago. Scared the crap out of us. A big kid. Omg. You send them out into the world and just have to hope they come back in one piece. It’s terrifying.

I got to see her this past weekend, and I was so relieved to see her doing ok. My niece survived her fall out of the high chair just fine too, by the way.

I don’t know how to tell this big kid: you only get one. You only get one body. You only get one shot. You can’t order another body on an app on your phone. We only get one planet.

We only get one shot.

I know it’s hard for people to understand what I wrote yesterday. That I’ll go for my dreams, no matter what. Of course, I’m hoping that things work out! I hope that I can get to the point where I’m not having to beg for help. That I can eat more. That I don’t keep malnourishing.

But I do this because I know all too well: you only get one shot. There’s only one life, and no do-overs.

I’ll keep trying to keep myself alive. I will. But I’m also going to go for my dreams.

I’ve sacrificed too much to stop now.

But I have also promised to minimize the gross sugary stuff I eat too much of when my dad is sick. I’m kind of sick of it by now. Which I knew would happen.

I find it fascinating that other people can put all these things in their body and nothing bad happens (well not yet anyway). I don’t have that option.

I’m trying. I really am trying. I’m doing everything I can to keep this body going. I’m doing everything I can to keep my mind sane.

But dang.

It’s not easy.

It helps. Knowing how many people I have cheering me on.

It helps knowing that my story isn’t finished yet, even though, I feel like it could be.

There are still unknowns. There are still kisses I may get to have. There are still stories that haven’t been written yet.

That’s really the truth of why I stay, beyond the kids.

I’m too curious.

That fucking curiosity - why can’t I spell that damn word - it may end up killing me.

But really.

I think my curiosity is in large part what keeps me alive.

What’s going to happen next?

How is this going to all play out?

The only way to find out.

And be bold.

So here I am.

Much love,

Jules