I'm trying to find silver linings 6.3.19

This was taken in my newly painted “living room” which makes me feel like I have a place to have people over. If I’m going to be stuck indoors all summer, it will be lovely to have people come to me.

This was taken in my newly painted “living room” which makes me feel like I have a place to have people over. If I’m going to be stuck indoors all summer, it will be lovely to have people come to me.

My mom just called. She had to take my dad into the ER because his ankle was super swollen. Because he has those clots sitting in his leg - that could break off any time and cause another stroke or heart attack - they had him come in.

His primary doctor wanted him to go to the hospital system that fucked this up and caused a lot of these issues. My mom didn’t want to take him there. I assured her that the more recent hospital he was in was the best bet. My poor mom. She looks like a zombie most days.

It’s hard to watch.

They didn’t really understand all this time what a nightmare it is to be be disabled, rely on medical supplies and home health. Even though they saw me go through it! I know that denial is their coping mechanism for a lot of this. But still.

Now, she’s got a stack of mail sitting there. My brother gave her shit about it.

[Shake of my head]

It’s weird how you can literally watch someone go through something but not really understand until you’re in it. My relationship with my dad has improved a lot lately!

They get it now.

It’s a fucking hellish nightmare that you don’t get to ever wake up from.

He’ll likely never be off oxygen. He’ll probably never ride his bike. (Or play golf, can I please get rid of the golf clubs you haven’t used in decades! No! But damn, are they relieved I got them to clean out most of the basement. I’m finishing off the rest. We don’t need kids books written in Hebrew!!?!?! Or 80s VHS movies! Ok, I kept the Buns of Steel because it’s so fucking funny.)

We don’t even know if he’ll survive the summer.

I had the donation slip to Good Will from a bunch of crap that I FINALLY got to get rid of (and yes, I’m doing all of this on my limited energy - if I have to live in this space, then it needs to be nice and if we need to sell the house…well, I’m getting it done. And no, no one else in the family is helping me do it).

I’m in a weird head space.

I’m sure that’s obvious by now to anyone reading in here.

I just got an email from someone that said someone recommended checking me out, and she knows me! (I think from Bastyr? My memory is shoddy, I often do recall people but can’t remember from where these days.)

It’s funny that it arrived on this day because before I got the call from my mom, I was going to write about how I’m really struggling with the whole social media thing and launching myself even further onto the Internet. There’s already so much of ME on the fucking Internet. Thank goodness I was raised during a time without smartphones and selfies - more fucked up in a lot of ways, don’t get me wrong.

I worry about young people and their only life experience being through the lens of social media.

At least I can turn off my phone (which I often do in the evenings or I leave it in another room and don’t look at it) and understand that I’m getting back to myself during those breaks.

Do they even know WHO they are without social media? I worry about that and how they ALWAYS have their phone open. I was at Target picking up a few things for my new space (YESSSS, found a lamp on sale!) and one of the boys working there was getting the shopping carts in the parking lot looking at his phone! He obviously used the few minutes in the parking lot to look at his phone.

I could have driven my car into his cars and I’m not sure he would have looked up until actual impact.

Sigh.

What do I do? I’m going to be 48 years old this year (WHAT THE FUCK!). I don’t mind getting older. Every year, I recognize how lucky I am to be alive. It’s more of a what does it mean to be middle aged in this world now? What does it mean that I’m stuck living with my folks? (For the time being, I’m making peace with it. The thought of moving sounds terrifying at this juncture so for the moment, it’s off the table. But I do dream of all kinds of scenarios. My goal is to end up in a condo with a grad student who subsidizes rent in exchange for heavier workload and keeping an eye on me or a house with a few people in Capitol Hill. Moving to a smaller town won’t work since I need to be near major hospitals, even though I’m at a point where I’d like to escape to the woods….)

How do I stay focused on what’s REAL while sharing so much of my life on the Internet.

I feel like we each have two lives. One in the real world. One in the digital world.

If I spend so much time in the digital sphere, how do I keep my psyche and keep my feet firmly planted in the ground - the real ground, the dirt, the salt of the Earth.

How do I not become a narcissist? What if I already am? (My therapist assures me that real narcissists don’t question if they are narcissists but I’m not sold.)

How do these other sick people spend so much of their time on the Internet? I feel like every minute has to be productive these days. I know that the Internet can provide answers to my case, can help me create community with other like-minded peeps I’d never meet in person and maybe, JUST MAYBE, allow me a way to generate income.

All of those things make it seem like the choice is obvious.

But there are many days where I simply don’t feel like posting. Or sharing a photo of myself. Or talking about myself. Well, I can write in here for pages and pages, as anyone can see! But I’m not JUST talking about myself, I like to ponder the world and discuss what’s happening.

Social media makes that possible to do now, but it’s this weird balance to keeping it real, and being a smart business person.

I'm starting to make peace with the fact that I’ll probably always have a patchy social media presence. I simply could not do a podcast last week.

This is why working for someone else isn’t possible. At least if it’s my own business venture that gets neglected, I’m not impacting anyone else.

I get so tired of my face. When I’m not feeling well, mentally or physically, I don’t want photos taken.

But here I am moving forward with creating a photography studio. I guess it feels different if I approach it with the goal of sharing nutrition info, mental health awareness, what it’s like to now be disabled, all of that makes the decision to move forward make sense.

It’s got to be a logical decision for me!

However, I worry if I grow anymore that my mental health will be adversely impacted and I can’t risk that.

It’s a tough call.

I could easily drop off all of my accounts - right NOW at least - and feel ok about it.

I like writing in here though. I like the practice of it and the commitment of writing daily. I like having a place to write about whatever is going through my mind or tie in an idea I had from a tv show. Have I mentioned that another page I want to create on here is Reviews? I’d review tv shows and movies, and health products. Things like that. And yes, that sounds daunting on top of all of the other content I’m organizing.

I wonder, though, if it could provide infrastructure for sharing nutrition info? Damn that nut is hard to crack. I can’t chase it, I’ve found. I have to be patient and let it arrive when I’m ready for it.

For now, I think I should focus on tightening my writing here.

AND, get a new photo story series ready!

Through all my house organizing, I keep moving a bulletin board with my outline for a series on becoming disabled. It sounded so scary when I started developing it last winter! Yes! Nearly a year and a half. Other writers know that’s not that long. But it feels like it’s a long time to sit on this!

Well, today, I pulled the bulletin board in my room, got my old computer with old photos, and organized the outline even further in a Google doc. Now the headline has a matching photo.

All I need to do is write.

I don’t think I’m going to do the pressure of writing the day of, but maybe I will. I think I’d rather start writing those and have time to edit them. Since they will contain medical and nutrition info, I want to make sure they are solid pieces.

I’m hoping from there, a method for sharing my nutrition info will come to me.

It’s hard to make sense of it all! I’ve had like six serious conditions? Something like that. Maybe it’s closer to ten. Whatever. A LOT OF MEDICAL ISSUES.

Then I want to do a 30 day series on party/slutty stories, just for fun. I know what the Internet likes! I want to do the medical one first though. That’s important and I want to find my tribe online. Like I said, too, I’m hoping a method to reveal itself for organizing all my nutrition info.

I don’t know.

I feel all over the place these days.

I need to know what’s real, what’s solid. And with so many changes happening SO FAST, both in my own life, then in my family, then in the outer world, it’s hard to not feel dizzy from it all.

I know my relationships with the kids is real. I know my friendships with my friends is real. I know that…fuck I’m not sure what else to write.

I guess I know those two things.

They help keep me grounded, remind me of who I am. Not the persona or “self” that I happened to present that day online. But the full self. Not easy for a codependent who shape shifts in order to keep everyone else happy.

I think writing and sharing on the Internet has actually been a powerful lesson in finding myself. I guess that’s my answer.

As long as I’m getting more benefit than challenges, then I keep doing it. I just read about these Games of Thrones actresses saying they had severe depression from all the horrible comments made about them! These young, beautiful, talented women, treated like shit for being on a tv show. Ugh. The young one, I think she played Arya Stark, said she wants a normal life now “because it’s not worth it.”

People are so quick to judge and write horrible things on the Internet. But it can also be a place of redemption and finding oneself, and in my case, finding life-saving information.

Who am I without the Internet? Is anyone asking that these days?

The millennials and the kids understand what it is I’m trying to do. Not all my peers or older peeps get it. They think it’s like deciding to move to the prairie land.

Nope, there’s cities out here. And a lot of people are doing it now. Just taking another adventure.

That’s how I’ll look at it!

It’s just another adventure. And when I decide I’m done, I’m done. That’s my carrot. I do whatever the hell it is that I’m supposed to do in this fucked up life of mine - I feel like if I get off this path, more bad things will happen…(would my dad have gotten so sick if I’d been braver earlier…I know I know, it’s not my fault, but I can’t take any more chances…).

It’s time.

Sigh.

Sounds so hard. Though, the thought of creating art, sharing medical/nutrition info with people, and doing more writing projects excites me.

At least I have an empty, white room that’s ready for whatever I want to create!

I’m still so tired from the weekend. I hate being tired at the beginning of the week. But I’m glad I’ve been getting shit done. That always makes my mind happy.

I guess that’s the answer: getting shit done makes me happy. And if staying alive and SURVIVAL is totally reliant on the Internet, then that’s what I have to do.

It’s a job. Being on the Internet. That’s how I’ll look at it. As impersonal as that sounds, I have to think of it that way. If there are people who don’t like how I do my job, that’s their problem, not mind.

One foot in front of the other, that’s all I can do now. That’s all we can ever do.

Much love,

Jules