I'm actually excited 5.14.19

This is the newly painted room!!!! I’m so thrilled with how it turned out!!

This is the newly painted room!!!! I’m so thrilled with how it turned out!!

I realize it’s really hard to fathom my existence.

I know this because I struggle with trying to wrap my own head around it.

As time goes on, I am forgetting what it’s like to eat normally, which is actually a good thing.

I can’t miss what I don’t remember.

I guess it would be like someone who loses their sight.

Eventually, they don’t see colors anymore.

It’s been a really long time since I felt excited for…anything, really.

I haven’t shared how incredibly dark things got for me this winter. I see why so many people end up committing suicide and people around them are confused: why didn’t they say anything? How did I not know?

I wasn’t ever at a point where I felt in danger of actually ACTING on it.

But the suicide ideation was DEFINITELY present and strong. And consistent.

How do you share that with people? And the truth is: I DID share that I was struggling a lot - and a frightening amount of people chose to ignore what I was saying. Or what I was expressing.

Some even tried to minimize it. Or deny it.

That’s how fucked up our country is about dark feelings.

It can’t be a surprise to anyone that I can get this dark - especially when I wasn’t able to eat hardly anything and in so much pain - this was the longest partial obstruction I’ve ever clocked at two MONTHS.

I think I’m getting ready to write something about this for the public. But I’m just now crawling out of the fucking ugly dark hole I’ve been in for months. So it may take me a little time to figure out how to say it.

If my dad keeps getting sicker, I might be crawling back into that hole. Or another hole.

I don’t know how the darkness works exactly.

I only know that I’m either IN it, or NOT. I’m not far enough out of this time in my life to evaluate it with any hindsight yet.

Even though my dad isn’t technically doing well, he is at least feeling ok these past few days.

I’ve been meaning to post an update about him on Facebook for a good week.

I keep putting it off. It’s because I keep hoping we’ll get better news than we’ve had. I don’t want to tell everyone that he had to stop treatment and may have to do chemo.

Everyone keeps telling him to put on weight, that he has to be strong to do chemotherapy. His calves look like my arms.

And even my normally pretty fleshy and muscular arms aren’t looking like they used to these days either.

In this new piece, I will also be sharing how incredibly ableist it is to not * believe * disabled people about their pain / their experience / their struggles. To deny or minimize it is really one of the worst thing a person can do - at least in MY book. I’m sure many disabled and medically fragile have their own list of Top Shitty things people do.

I’m new to this world and so far, not having people in my orbit believe what’s going on has been the hardest piece.

Now that my dad is sick and we’re both shrinking, there is finally some believing! But dang, what does it take?

I guess I will also need to post a photo that shows what I look like now. I was screwing around with the new white walls and took a photo. I didn’t realize I looked that way until the image stared back at me. It’s weird. I did that when I gained weight too. Not uncommon. It often takes a photo to recognize the changes we go through!

I guess I’ve been hoping I could get my old shape back. But so far, no go. I work so hard at it too. If I do photos, I don’t want to glamorize it. At least not at the outset. Like I’ve said before, I’ll leverage it for the Movement and for my survival. But it grosses me out otherwise. Let me state that for the record. The stupid Patriarchy and it’s worshipping of near-death thinness makes me want to smash things. To have to do the very thing I resent in order to survive….

My poor dad. I don’t think he’s seeing what he really looks like either. He’s still seeing himself the way he used to look as well. I can tell.

I’m not sure how well he is processing things since the stroke. So many hits in a short amount of time.

The thought of something happening to him makes me feel like I’m climbing up a muddy mountain and clawing and clawing, but getting nowhere. That’s the part of me that doesn’t want to lose my dad. The heartbreak alone from that is unfathomable.

Then the other part of is in survival mode, just moving from one task to the next. I’m frantically working my ass off trying to keep my medical case going (I think I finally will get more nutrients in my IV bags as of maybe, hopefully, TOMORROW? Gd I love my new doctor so much - all of them - so amazing but the concierge one…if she needed one of my crap organs, I’d give it to her and that’s saying a lot since i’m already down four) and figure out a way to survive if he isn’t able to go back to work. Or worse.

My heart keeps beating fast whenever I think about it. Thank goodness for my angels. At least I know I won’t be homeless.

That’s the thing though. I don’t want to be dependent on anyone.

It is amazing how insensitive people are when dealing with a sick person. They don’t realize that however their own viewpoint of the world is will color their perception. So if they are competitive, they see others as competitive. If they are worried about status, they think everyone is worried about status.

I admit, there have been times I felt jealous or competitive in my field. Of course I did! Dang the food world exploded years after I got into it. We were just a bunch of hippie nerds in the 90s hollering.

Then the others walked in and a lot of us were pushed us out.

But now? Geezus. My personal goals are as followed:

Stay alive.

Keep Dad alive.

Watch kids grow up as much as possible.

Be able to shit without pain.

Be able to eat without pain

Be able to exist with pain.

Be able to sleep a full night.

Find a way to generate income from home and that doesn’t hurt my body or cause major stress.

Not become homeless.

Not be scared about surviving this administration.

Not get a 5th cancer.

This is what the room looked like at night. The lighting is terrible - only on the right side and the brown walls and popcorn ceiling (not to mention the HOLE in the ceiling) made it feel like a bad 1980s horror movie. Every once in awhile, someone would approach the sliding doors and give me a heart attack. I’m removing those glass doors next! It’s basically broken anyway and then I can have my own official entrance. Small thing in theory but huge for a disabled person that is now dependent.

This is what the room looked like at night. The lighting is terrible - only on the right side and the brown walls and popcorn ceiling (not to mention the HOLE in the ceiling) made it feel like a bad 1980s horror movie. Every once in awhile, someone would approach the sliding doors and give me a heart attack. I’m removing those glass doors next! It’s basically broken anyway and then I can have my own official entrance. Small thing in theory but huge for a disabled person that is now dependent.

I could go on and on. But that’s basically my wish list these days.

I think I’m going to start working on my Dear People who have never had a Mental Breakdown or Been Suicidal: you need to be WAY the more careful with people who are going through a hard time.

I mean, who wants to be the person who pushes Julie Negrin over the edge? Does that cross the mind?

Please, let me state for the record: I’m super grateful for the beautiful wonderful old and new friends who ARE being so mindful and supportive and give a shit and are there for me in so many different ways.

Perhaps people think I’m being dramatic (sure, yeah) when I say these people help keep me alive.

For me, gratitude has been more and more important - because you can see where else my head goes if I’m not focusing on the thank yous and the appreciation.

Gratitude moves my rants and frustration over to a completely different track in my mind.

I’m also considering creating some boundaries and rules for engagement. Like if you want to be in my inner orbit, this is the deal. I don’t know. I definitely need to create that list for ME even if it’s not public. I’ve been so bad about creating boundaries all these years! And then I let people move the boundaries around based on THEIR needs instead of mine. I used to have the energy to deal with all of this.

I don’t anymore. I don’t have hardly any physical or mental bandwidth to fudge with. I get a little tiny slack and then boom, I’m a wreck.

I have to be more vigilant with my energy, my giving, my time. It’s fine for both parties to make sure their boundaries are being honored. I simply can’t deal with anyone who is barging into my world and not mindful of my mental health, my boundaries, my needs as a chronically ill person and the laser focus I must have on survival.

That’s all I know.

I also know that I’m actually feeling super excited for this new space! It feels like a beautiful empty canvas waiting to be filled with art, and people, and events, and learning, and growing, and pushing myself to be more brave in acting or in video or on camera. I don’t know! It feels like a fresh new chapter, instead of a reminder of how I’m stuck here, dependent and living in a place that’s all about the past.

For the first time, the not knowing doesn’t feel totally terrifying, but instead exhilarating. Maybe some good stuff will turn up these next few months. Maybe my dad will pull it out - he’s totally like that. Both my parents have almost died several times. It’s kind of the Negrin way.

But I also can’t be a dumbass denial person and be ready to face the worst.

Sigh….too much. All of it is too much on top of what’s happening in the world.

At least I’ve been able to maintain my calorie intake and now getting more IV nutrients! Wow, that only took two years. These past few months have been brutal.

I can’t stop moving a mile a minute when I am able to - I feel like I have so little time, all of the time. So many tasks, everyday ones, planning, coordinating with doctors, figuring out a way to generate income, managing my calorie intake.

Too much for one person. My crew is a life-saver on so many levels!

I wish I could build a laboratory down here too. Start doing proper experiments. I look forward to counting my nutrient intake with an RD so that we can determine optimal levels for everything. I want to titrate that shit DOWN to the best possible levels for energy, immune function and cancer prevention. It’s possible. But i can’t do that AND chase after medical answers AND try to help my dad AND fiddle around with recipes in the kitchen AND AND AND AND AND AND…..

If I do this right, I could make it a few more years for sure if no more cancer comes back.

Who the hell knows.

All I know is that I’m a tiny bit excited about a new chapter. While also terrified for my dad.

I’ll just keep going. Now, I have to walk on the treadmill, even though I’m very tired. This light keeps waking me up early after going to bed late.

I still love the Light though.

Anything is better than being stuck in the Dark.

Much love,

Jules