Summer is a busy time 7.22.19

Still have mottling on my stomach and not one practitioner or doctor knows what it means for me.

Still have mottling on my stomach and not one practitioner or doctor knows what it means for me.

It’s been a busy few days! It’s very warm out, so I’m either asleep / dozing or busy trying to do some "regular” person activities.

It is so so important for my mental health - more than ever - for me to do some normal stuff. I get so few hours here and there, where I’m not actively focusing on my medical case / body (meaning, not going to the doctor, or creating all my beverages or doing my routine) and then add in the grieving for my dad???

Oy vey.

It’s a lot. I can’t believe it still hasn’t been a month since he left.

He left.

What a phrase to use.

But he kind of did leave.

The grief keeps morphing, changing. Like children - just as I think I’ve got a handle on it, it changes on me. I’m not breaking down crying except for late at night. I keep wanting to ask him little things. Hey how do you think I should fix this? Should I get this kind of curtain rod for these windows?

It’s weird how I didn’t realize all these things I counted on him for. Which seems odd that I wouldn’t recognize that.

I keep thinking about all the times he helped me move.

I said on Facebook, I wouldn’t have been able to be the gypsy I was all these years if it wasn’t for him. Dang, he’d ship me boxes! One time, I can’t remember which move, I got so upset because I couldn’t find anything but $7 boxes (EACH!!!) at Staples in Manhattan. It must have been when I was moving from Manhattan to San Diego - I think he was recovering from a surgery and I had so little to move I did it on my own.

Those three years - from the melanoma in 2010 which they found RIGHT as I’d officially moved back to Manhattan - and I felt so trapped because all my work was there during the recession - to 2013, I bought as little as possible. Just enough to be functional and comfortable. My friend who gave me the apartment had already gifted me the couch, I bought a tiny kids desk off Craig’s list and a table from the thrift store across the street.

When it came time to move, I only packed the essentials and shipped all my winter clothes back to Seattle.

I carried the boxes down three flights of stairs, Marv style, on my shoulder, one by one and shipped them from around the corner at the UPS store. It took so long for that melanoma in my leg to heal, I could not have done the move any earlier than a full two years after the last surgery. That’s how huge the wound was.

Other than that time, my dad always helped me.

He never complained. He wasn’t always chipper about it! He liked to grumble a lot. But I could always tell when he was just being a curmudgeon and secretly loving the task, and when he legit wasn’t happy doing something. He LOVES packing things up. I got ZERO of those skills - goes with my missing mechanical skills - the missing spatial skills.

Someone mentioned how savvy he was at building custom boxes on Facebook and he really was! He’d somehow take a bunch of boxes, a box cutter, and his tape - omg there are so many tape dispensers in this house - and somehow created these super weird shaped boxes that would fit my vacuum cleaner, large picture frames, whatever.

He didn’t understand what I was trying to do all these years, my business goals, my dream of being an author.

Like the whimsical / austere, he didn’t quite get the new businesses cropping up over the last 10-15 years.

Part of the reason he and the box business struggled these past years is because the lack of understanding around having an online presence (don’t get me started on the Yelp reviews for their business).

He was an old-school sales guy!

But for whatever reason, he trusted that what I was doing was what I should be doing.

I never appreciated that until recent years.

He understood the main thing I was doing: going after my dreams. He really did trust me. He’d grumble, or get annoyed with the move, but we moved together so many times, I know how he thinks now.

The last night he slept in this house, my sister wanted to bring the recliner up from the “dungeon” (haha sounds all S&M, but really, I nicknamed the last bedroom downstairs that in high school because it was always so cold in there, and kind of a little creepy, if I’m honest). She wanted to carry it up the stairs. She is tall. I am not. I have to be more clever being a small, sick person.

My dad was barely coherent on the couch upstairs but I knew what he’d suggest. I said: let’s get his dolly and take it out the downstairs sliding door, and then drag it up the sidewalk along the house.

She was like: oh yeah, that’s so clever! And I’m like: dude that’s all Dad, I’m just doing what he would have suggested. (Plus, she admitted later there all kinds of dents all over her house because she carries random crap awkwardly - I’m like, yeah that’s me and Ikea furniture.)

My dad never tried to stop me from pursuing my dreams!! I hear so many stories and I wonder: how did I get the parents who despite the not-wonderful stuff which is going to be a part of every family because let’s face it, humans are by design, dysfunctional, always had my back all these years? Even when it meant having to move in with them to write my cookbook, or help me ship them (doesn’t happen that often, unfortunately, that’s a whole other story), or why I was moving yet AGAIN.

He just backed me up. All of the time. It helped that my mom was supportive too of me having my own business. I was born in 1971 and they got it. They saw and understood the root of it all, even if they didn’t understand where I was headed: I wanted to do something all on my own.

Never once, did my parents say: why don’t you just get married? What’s wrong with you? Why aren’t you getting a regular job and a husband?

Every once in awhile, my mom would say with a chuckle: you know Julie your life would be a lot easier if you married someone with some security since you clearly don’t care about making money.

And I’d look up from whatever I was doing and say: what? Blink, blink.

She’d just laugh and continue cleaning up the kitchen. I’d go back to my nose in the computer.

If I hadn’t gotten sick…who knows what I could have made of the kids and cooking, or how I could have turned my cookbook into an interactive online education forum for kids, parents and teachers. I had so many ideas.

Now, I’m just going to give it all away. That entire business I spent so many years building? Give it away. Organize it first, then give it AWAY.

If I’m tired of the greed, then I have to model the opposite.

I have all this content stuck on my computer and in my brain, what good is it if it dies with me? It’s so stupid, our culture’s obsession with money.

I think back to the guy who gave me a ride when I was hitchhiking in Kauai.

He said the people with the big, fancy houses along the beach with so much glass were all freaking out about the big storm (I think it was 1992 or 1994).

But he said, the locals didn’t bat an eyelash. He said: we understand how nature works and that sometimes the ocean or the skies are going to overpower us, so we don’t get super attached to our belongings or a house.

I didn’t realize that living like a gypsy - and let’s just be clear that I was in no way suffering all this time AT ALL, just not collecting a bunch of crap - that it would prepare me for this time in my life.

So many people think they are MORE powerful with their big house, and their big bank accounts, and their big cars.

However, one of the reasons I’ve managed to get through this horrific crap going on in my life is that I never got too attached to much.

I was VERY attached to my colon though! I will say that! I did NOT want to let that go. That’s such a complicated rabbit hole that I can’t go down now.

The point is that when we have TOO many things, or we remain TOO attached to a person or a child or an identity, or a way of looking - for example, celebrities that struggle with aging - that’s when we suffer the most.

One of the only ways I’ve made it through all these trials is that I kept my life simple to start with - and even then as things were stripped away, it has been super difficult. I’m never going to say that these last few years weren’t fucking hard as fuck.

I’m just saying I think being a gypsy made adjusting to this new life of mine a tad bit easier.

I think THAT is what I was struggling with in my twenties but didn’t have the vocabulary or life experience to recognize what it was.

I was afraid to get too attached to anything, because I knew how easily it could all be taken away. So fatalist, a friend told me, when I said: well if I don’t get too far into a relationship, then I don’t have to go through a break-up.

[Shake shake of my head now.] THAT was my logic by my thirties, though I’d keep attempting things anyway.

Instead I didn’t understand the core of the Buddhist teaching: you don’t isolate in order to not get attached. The trick - and it’s not easy at all - is to allow closeness while understanding that whatever it is, an item, a person, doesn’t truly belong to us and that it might leave or disappear at any time.

Detachment while allowing people to be close. It’s a tough lesson. Porous boundaries.

I see so many people smugly going about their business, assuming that nobody in their world will get really sick, or have a major legal problem, or have a tragic accident or get cancer, or lose all their money.

As if that’s how life works.

NOBODY wakes up and thinks: oh, I think I’m going to end up being disabled later this year, I’d better get my shit together! I’d better have 10 years worth of savings put away, and have my family house organized for a physical limitation!

Or: oh, I might end up with cancer so I’d better make sure my partner also has an income just in case.

Or: oh, I could end up paralyzed from a shitty, drunk driver and then be dependent on others for the rest of my life.

NOBODY THINKS THESE THINGS.

Until it happens to you or someone close to you.

And then you realize: I’m not special. I’m not a special little (white) person that will never, ever have anything terrible or awful happen to me.

I’m just another human, a speck of dust in the Universe, that could have anything happen at any time, anywhere.

And then the next thought: well, it’s a good idea that we have safety nets in place, I’d better make sure they’re there for all of us. I should also make sure that our healthcare system is safe for me, my family and our community, let’s see how are ways to shore it up.

Or keep sticking head in sand: mmmm why are all those people hollering about what….? Meh, that doesn’t impact me so…. let’s see how can I get cheaper flights to Paris later this year…..

When crisis strikes, who do they contact?

I get it. It’s kind of the same with growing kids up into adults.

They act like they got it all handled! I don’t need you!

It’s only because I’ve been doing this for so many years that I’ve finally got the hang of it.

Ok, I say!

When you need me, I’ll be here. I’ll be your anchor while you row out to sea.

And eventually they show back up again. I think of that nature show with the English dude, and watching the young eagle learn to fly. It kept coming back to the nest as it flew a little further each time, until eventually it just flew away.

I’m realizing more and more: if things go ok, and your lucky enough to have a kid that isn’t suffering from any medical or mental or any other problems that they couldn’t help, then they leave you.

If all goes well, they leave.

It’s pretty heartbreaking actually. If you do your job right and there is some luck in this - nobody can get smug about that shit - I laughed when I saw a celebrity saying they’re killing it as a parent. Their kid was 2.

They are SUPPOSED to leave and make their own home. Hard.

So hard to stand very, very still and not run after them: did you get enough food? Are you sleeping ok? I feel like that’s the key with teens. Non-reactivity, and standing so still, almost zen like - kind of how people have been for me when I’m the one riding out the storm! I’m learning here, people, it may be a nightmare, but I am taking in a LOT of lessons in a short amount of time. Takes awhile for me to absorb them, and then spit them back out again.

So I’m trying to apply that kind of thinking to the rest of the world too. Instead of banging on doors to try to get a teen to open up, or an adult to open their mind, instead the key is to actually remain as still as possible.

And just try to be as centered as possible for the storm coming their way.

It’s coming all our way now.

Ugh I’m not ready yet for any more storms.

I’m washed up to shore now. Finally on whatever island it is that I must now reside. My old home far, far away - so far, I don’t even really remember it.

My friends out in their boats, the angels rowed with me all this way so that they could keep me company.

In the end, though, I’m going to have to traverse this island alone, until I figure out how to set up camp, how to survive this world that’s so freaking mean to disabled (trauma therapist said ok best of luck when I told her I couldn’t get past the fact that she had stairs that are dangerous for me when my biochemistry is wonky - she is like fuck you, don’t care! Rich tech people will fund my business disabled lady. Ps I mentioned that she should check the ADA laws - still she gave me the polite professional bird).

That’s what so many don’t get right now.

So many think the wrong things give them power. No, needing a lot doesn’t make someone strong or powerful! Why else would those movies with the quote / unquote POWERFUL man freaking out in his castle, pushing buttons, trying to hide from whoever. Too attached to his money and items to fathom life without them.

That’s not power.

I think that’s what I knew intuitively when I was a young woman.

I watch my mom. She’s a tough cookie and has a large family close by, so she’ll be fine. But she’s not used to being alone. It’s so weird how so many have gotten so smug with me over the years.

Oh, you’re not married. Oh, you’re living in a rental. Oh, you’re blah blah blah.

And all I’m thinking is: honey your husband is flirting with the male waiter around the corner and you’re stuck in 1995 so get snotty with me all you want, but I’ll be just fine, somehow, I’m wily like that.

Look, still, all these years. And I still got attitude.

But it’s never a good idea to get smug. Even me. Hahaa! I can still get smug! I just get slapped down really, really fast these days when I do. And even when I don’t.

Then who do they call when the divorce happens? Or when something goes wrong?

It’s a very dangerous way to live, assuming nothing bad is going to happen. Of course, you don’t want to be a nervous nellie. Just smart. Prepared. Know where your anchors are. Create a large enough network that if part of it poops out on you, there are other options. This is what I tell young people.

I’ve always thought it was a strange idea to put so many eggs in so few baskets.

Fortunately, for me, I made better decisions than I thought I did.

It is tempting now. To walk this island, and find the security of someone that’s already built their hut, and has a warm fire going.

Security and companionship are so so primal for us humans.

I’ve had to be so disciplined for so long now, it makes it easier but also harder. I don’t love it though. This road I’m walking. I certainly do not.

When you live on the little food that I live on, you learn how to tolerate a lot of things.

I have no idea if any of this is making sense. It’s either like new age gold, or a complete irrational dogshit.

That’s why that self-loathing artist piece is important!

The minute I think my shit don’t stink is the minute I should definitely take myself off the Internet, go meditate in the woods and remember that I’m just one tiny organism in a huge vast world.

No better or worse. When you see me getting arrogant on here in one post and then super hard on myself in another, that’s the codependency. It’s called one up / one down - someone is always better or worse. I was so so relieved when I learned that because I couldn’t figure out why I’d go from having all these superiority thoughts to thinking I’m garbage in a matter of hours, even minutes. Ugh. I don’t miss that self-talk at all!

Thankfully, I’m better about that, but the tendency is still there, and obviously, under duress with my dad…well it bursts out.

The key to recovery is to remember that we’re all equal.

That’s the point of this post. That we are all equal. We all are humans walking around doing the best we can on any given day. Some days, one person may invent something awesome. Another day, someone decides to do something shitty.

In the end, most of us are the sum of a lot of good and bad decisions.

The perfection that the Patriarchy brainwashes everyone to strive for is to distract.

Once we have self acceptance, we can see how fucked up the whole thing is, and of course, there is a strong desire to break it down! Once we realize that we truly are all equal, we don’t want to do anything but FIGHT for equality.

That’s the saddest part of when people do lame things to me - because I think: really, you’re being shitty to the newly disabled lady who just lost her dad? Dear, there’s something you need to unpack here, and it has not one iota to do with me.

I’m just the messenger.

I had to go through such shit to get here. And maybe I’ll be dragged out to sea again. Maybe the thing in my leg is melanoma and I’ll somehow have to eat without being able to walk enough to move the eggs through - that’s how dangerous something like even a small bit of melanoma can be for someone in my position.

One thing - that would only drag an able bodied person down for a matter of months - could lead to my death.

Too much sitting means I lose motility in my GI, means I can’t eat much, means I lose muscle…means…danger.

Ok, gotta go get ready for my class. I’m determined to go tonight and I have a ride so no excuses!

My friends and I have all decided that even I sit in back, half dozing, at least I go to class, and try to laugh.

I’m really trying to get out of the house when I can. I’ve been sleeping WAY too much, and sleeping means not eating enough, and then it’s this vicious cycle where I’m afraid I’ll just sleep 3 days a week, then 4 days a week, then I get weaker and weaker, and then I don’t get out of bed at all….

It’s terrifying.

But I have to make peace with this house of horrors I live in. This scary island that I must walk alone. I can’t keep crying about it. I’ve got to focus on surviving it.

I think of that Ricky Schroder (remember him!?!?) in the movie Earthling. We had Showtime when it first came out, so I’d get to see the same movie over and over until it was imprinted on my brain. He and I are the same age, so I think it came out when I was like 11 years old? 1982ish?

It’s about a kid who is in the Australian outback with his parents but their RV crashes, they die and he is all alone. Of course, he is freaking out. But this survivalist dude finds him and, they have this awkward relationship, of course, because the kid is traumatized. Eventually, the older man gets through to the kid: I can teach you how to survive, but you may have to walk out of here alone - I don’t know how I remember this part of the movie/lesson, the old man said: if you stay here, you die.

If you walk out, you have a chance in hell of surviving and getting back to civilization, but the only way to them is to walk.

There is no time, for many of us, to freak out or wig out or pretend like nothing bad is happening. Or to put off what needs to be done as much as I’d like to continue doing that.

I’ll grieve my dad, I’ll always be grieving my dad, until the day I see him again.

But I must focus on my survival. The ripple effect is very much on my mind. I don’t get to prioritize my needs over the greater good anymore. Nobody does. The trick for me is figuring out how to keep myself alive and put the oxygen mask on myself while also keeping strong boundaries while helping out the greater good when I can. That’s hard for me - that balance.

For now, I focus on making sure my nutrition needs are met, and figuring out a game plan for my next chapter. Have no fucking clue what or how about my next chapter.

It’s not coming to me which is always a bit terrifying (will I need surgery on my leg?). But I’m really trying to stay centered and have faith. It is SO freaking hard after so much has gone wrong. It’s either stay zen or be freaking out all the time.

There are not other options at this time.

The only way out is through.

Much love,

Jules