I left my cocoon! 3.4.19

Goofing off in improv class is one of my only pure pleasures these days. I LOVE IT. How cute are my classmates, always game for a game.

Goofing off in improv class is one of my only pure pleasures these days. I LOVE IT. How cute are my classmates, always game for a game.

I made it to my improv class last night (on 3.9) which was an amazing feeling. I actually had some energy and felt like myself which was a lovely surprise. I’ve been super sleepy at the other classes I managed to attend (I’ve missed two out of the eight unfortunately). I’ve been so low energy now for several weeks due to little food. Also, when I’m partially blocked in my intestines, I am extra tired. I’m at the point now where anything social or “fun,” sounds hard and nearly impossible. I get scared that I’m going to be “living just to live” as Claire Wineland expressed before her death. I also feel like that’s not a life worth living. I need to experience SOME of the world - I just have to be so so careful about how and when I leave my cocoon now…..

I laid in bed as much as I could in anticipation of the class. But I had so many phone calls to make to doctors that I did use up a lot of energy doing that.

I also had a call yesterday with an organization my friend, Jenn connected me to that is reviewing whether or not I’m eligible for more benefits from the state. Jenn and I met through mutual food friends - she works in food insecurity (while I worked in food education). Her knowledge in this area has been super helpful. She is concerned that I’m only receiving $15 per month in food assistance. I used to get $200 but the state lowered it when I started receiving federal benefits.

I’m also learning about this thing called a “spend down” which is essentially the state’s version of a deductible. I’m still learning how it works so don’t quote me on anything but basically, I’m not allowed to receive additional help from the state until I spend FIVE THOUSAND DOLLARS. Now, how in the heck is someone who is sick and already receiving benefits able to spend 5K quickly enough in the year to “deserve” help from the state? The woman at the organization explained that while the Affordable Care Act did wonderful things, it didn’t address this. Apparently, it affects poor elderly the most.

People who don’t have a Voice.

This is why I do what I do. The only way I haven’t gone completely insane - and that is in no way meant to be offensive to mentally ill people because I literally wonder how my psyche can handle the assaults it gets on a daily basis WHILE being hungry and struggling to balance hormones - is that I tell myself this is happening to ME for a reason. That all of this horribleness is happening so that I can truly understand the plight of the poor in this country. Many of my well-off peers struggle to grasp MY experience and they know me, and how quickly I’m able to pivot and plan and find solutions . How can any of us possibly understand what it’s like to be poor for an entire lifetime and be caught in a cycle of poverty unless we’ve experienced first or secondhand? It’s so hard for ME to see it and I’ve been working with low-income populations - in three different states - for two decades.

Experiencing it myself is the only real way to understand and I accept this mission. But daaaaammmn, it’s so hard! That sentence seems so tiny and understated when describing the depth of struggle and pain I endure.

But if I have to struggle in order for others to SEE, then so be it.

I do wish I could do a rewind on my life, though. I wish I would have made different life choices. I wish I would have worked at making sure I had more financial security. I wish I’d spent more time understanding the world of disability BEFORE I had to join it. I wish I’d done more therapy earlier in life. So many things….

It’s such a funny thing to me that when we’re young, we like to say “no regrets.” But now I wonder how it’s possible to get to mid-life and not have SOME regrets. It’s part of the deal, I suppose. We always wonder about the paths not taken….

For now, I used up my energy on my outing which was so much fun. I do hesitate to share this photo on Facebook though because I feel like people expect me to always look sad and weak and sick. I can’t possibly be feeling that way most of the week and STILL go out. This is the struggle with invisible disability. I don’t know what it’s like to have a visible disability. I only know this path and it’s strange mind fuck for me and others.

How can I be struggling with my health SO much and look SO fine? Well, for starters, make up helps! I went out for “drinks” (mine was a root beer) with my classmates after class which was an awesome treat. I can’t really hide my issues so well (nobody in class but my teacher knows what’s going on, I chose to keep it that way for awhile so I’d get to have a few hours of normalcy). While they were eating, I sucked ketchup off of french fries that were randomly placed on the table that nobody ordered. There are so many times I want to just BITE into them and eat the damn things. But the fear of a full-on bowel obstruction keeps me from ever making that mistake. I do have dreams where I eat something and then freak out, start spitting it out, gagging and basically melting down about what’s going to happen. That’s the thing about my weird eating issues - I don’t know for several hours, or longer, if something is going to be a problem.

It’s so gross to admit this but sometimes I have a few bites of something like sweet potato and I don’t see orange for several days. I’m like what the fuck? Where has that been hiding? Why does it get stuck? Is it the scar tissue or motility or both that make it get stuck in some loop in my intestines?

Maddening. The whole thing is maddening. I want to go record my podcast now. I’m all about downloading my brain to the Internet now. Even though it’s super tiring. Even though I know it could upset family members. Even though it means I receive cruel messages through my website.

I received a “comment” by someone named “Juan” who chewed me out for daring to say “I like being slutty.” in an old post. It’s the second one I’ve gotten on that post. I won’t go into the details but I was referred to as “pleasure meat package” for letting men other than a husband touch me. Oh, and he said he hoped his daughter blah blah blah, I try not to memorize it on purpose. I don’t want it in my psyche.

The world is a truly fucked up place. So many people arguing over stupid shit like whether or not I should make out with people but not so worried about the planet melting or sex trafficking.

Pleasure meat bag. That’s what it was: pleasure meat bag.

Well, Juan, guess what. I AM a pleasure meat bag. We all are. It’s called living in a human body.

Who am I to judge how another human enjoys their meat bag? Why does anyone care what others do behind closed doors as long as it’s between consenting adults? This has baffled me my entire life. WHO GIVES A FUCK HOW OTHER PEOPLE LIVE?

Truly. Since I was a child, I’ve never understood this.

Enough musings through the written word. Time to gab to a microphone. How the fuck I’m going to spit out the massive amount of content I want to is a mystery. But I’m game to try.

The words want out and I can’t deny them.

Much love,

Jules