I’m visiting and talking.
Smiling. Even laughing!
Then I walk to the bathroom and I catch a glimpse of my freshly shaved head.
Making sure I have things like meeting friends or improv class is important right now. It’s important that I have reasons to groom my head. Pluck my eyebrows. Put on make-up. Figure out what to wear.
I think I used up too much energy for the amount of calories I consumed today which doesn’t help the spaciness. I feel very spacey.
But I’m worried. I’m worried about my mind. I’m worried about what’s going to happen next. Whether it can handle another medical scare in my own camp, let alone lose my dad. My pops. My Lynch buddy.
My template for how to keep walking through this. He literally walked the hallways of the hospital after he lost his stomach. That was at the end of 2012.
That was the year before they found my first polyps, which they found at the end of 2013. I had that image in my mind. This is what you do. You walk right after surgery and you don’t stop walking.
That’s what I see him do. And I watched him survive.
So that’s what I do. In order to survive.
If his system doesn’t work. And my system, around nutrition, is starting to fail, then what.
Then what do I do. Do I finally write my Will through the lawyer who is going to charge me too much money. (Can’t I just publish the damn thing on the Internet and have a couple of witnesses sign it? FFS I don’t own much but I’d like to leave some specific things for people.)
Do I take control of the situation and plan my own death.
Do I keep trying to manage these traumatic experiences.
Do I find somewhere I can hide from the world and heal for a few months?
Does that place even exist. Oh, I wish I could do that so so bad.
I write this as my dad struggles to even speak. He can’t even say how many strawberries he wants in his over-night yogurt snack.
When you have no stomach, you can’t eat that much at a time. So he gets hungry in the middle of the night. Before all this shit happened, he’d eat a bunch of bananas.
Now, he needs to put on weight.
Omg if you could hear him trying to talk right now…
He’s getting worse.
I don’t even know if he’ll survive the summer.
What if I’m losing my mind.
What if I’m making all this up in my mind.
What if I don’t have a special destiny.
What if I’m just a fool that got unlucky.
What if the world is just a big fucking mess and there is nothing to do.
What if I can’t keep doing this if my dad dies.
What if I end up staring out the window for hours and hours, so much so that I don’t eat enough and my body starts to shut down.
What if I can’t do it anymore.
What if I disappoint people.
(This is where being codependent is actually a good thing.)
(I can’t die! I would disappoint so many people!)
What if I have to stand at my dad’s funeral in a matter of months, holding onto one of my nephews like I’m 80 years old.
What if the medical system gets even worse than it already is.
I spent so much time fighting the government these last two years, I lost crucial, very crucial time figuring out my case, setting up my own resources. Making sure I can get IV bags. I think I’m nearly there on that end.
I still need a gastro. If something breaks down again and I lose the three eggs….
I can go on TPN, but after my research, I’m concerned I won’t last long on TPN. It may not be good enough nutrition to fight off cancer. Not for long. Maybe a year or two, if I’m lucky.
I feel like all of this is a year or two, if I’m lucky and nothing catastrophic happens in this organism.
I see now. So many people didn’t understand how fragile my dad and I are.
They saw him so strong. And me so strong. And they didn’t understand how quickly it can all go downhill.
Do I regret using those two years to help others? Hell no.
Though, I do hope people appreciate it. Not feeling appreciated is in the same bucket as feeling invisible.
I guess that’s how a lot of people feel in lots of situations.
Invisible and unappreciated.
I guess that’s why I like speaking on this, making others feel less alone.
Because I know how much it sucks to feel alone.
It’s good to write here. It tethers me to something. It makes me feel more grounded as my dad continues to cough and shrink. I have somewhere to go with all the things swirling around my mind.
I wonder if I could lose my mind.
When my college roommate, Shannon and I would do drugs in college - she’s the more wild one, I know that sounds hard to believe but she really is way more wild and adventurous, her two daughters are two of the most well-behaved, strong, cool young women ever, beautiful of course too - I’m starting to write things in here, little notes for people to find in case something happens or I lose my shit and can’t keep writing - we’d say:
What if we don’t come back down? What if we stay this high forever?
And then we’d discuss whether or not the people who are deemed “mentally unwell” are might actually be the sane ones. What if it’s US that are really not sane? (Long before the Matrix, we’d talk about whether we’re just buying some make believe narrative…) We’d talk about this a lot, as our minds cracking open with each trip.
I was born in the wrong era. A little too late? A little too early?
I write this as I eat, I kid you not, chicken broth and bananas foster soy delicious dairy-free ice cream. It’s one of the only flavors of store bought vegan ice cream that I can tolerate. (they’re in separate containers)
I figured it out too late for the other flavors. Don’t eat it every day. Only small amounts. Don’t buy it for awhile. Fucked up the other ones.
I’m so glad that I’m continuing to develop community in Seattle even as this nightmare unfolds. Thank GOODNESS I signed up for improv class in January!
The earth is shifting so fast underneath me. It’s shifting for everyone, in so many ways. If our culture is the Truman Show set - everything is being torn down now. Our government is officially off the rails. Too many officials aren’t even trying to pretend like they’re following the law.
Weirdly this ice cream eaten alongside my chicken broth doesn’t feel like the weirdest meal.
It’s all so draining.
What I would give for a week off from this all. Oh gd, even a week with my IV bags, don’t care. Just. Something. That allows me to escape / forget / pretend for longer than a couple of hours.
I remember being lonely in my old life. Not always. I have a major introvert side that most people don’t know. Because they don’t see it! I love spending days in bed, reading, not talking to anyone. Then I need company, of course.
After super busy work weeks at my old job in New York, sometimes I wouldn’t talk to anyone for the entire weekend. Sometimes it bugged me, and I’d find something to do. But often I really enjoyed it. I’d walk around Brooklyn, go to the bookstore - back before we could read on a machine - walk through the park and people watch.
I remember wishing for something to be different, but not sure what it was exactly that I wanted to be different.
Now I know exactly what I’d wish for if I could do it all again. I’d not be so fucking afraid all the time. What on earth was I afraid of exactly? Falling on my face? Making a fool of myself? That’s the whole deal man! That means you’ve lived if you’ve fallen on your face over and over and over.
Dang, I’m talking about going to open mike and trying STAND UP with my improv buddies! I couldn’t, I wouldn’t, no way I would have tried that before.
What the fuck. We spend so long being afraid. And then you’re here, watching someone die right in front of your eyes. And you don’t know how long is on your clock either.
I would have been more bold. I would have taken improv in New York! I would have tried stand-up at an open mike! I would have stopped worrying so much about being “cool.” Lord. I would have been more pushy about my writing projects. I would have snuck into things. I would have been more slutty hahah just kidding, I like the amount I was thank ya very much. Though I would have been less nervous about experimenting - in a body that actually WORKS. I would have been less afraid to share my feelings. I would have been less afraid to love. Pfhhhhh when I think of how long I ran from that….oooooh pain…..run run run. And then SMACK I ran into a Mack size truck instead.
We are such silly stupid little humans, aren’t we. Horny, weird, silly, stupid, fearful humans.
I just don’t know. Maybe I am losing my mind. Wouldn’t that be an interesting movie? The concept: if I stop writing in here, or producing content, or speaking on my podcast, then I start to lose my mind. So I have to keep creating, creating - kind of Momento meets Russian Doll meets Speed? Hahaha, not the last one. I just love Keanu, I added that for fun.
I have so many movie ideas, have I mentioned that here?
And yes, living with this brain in this body is FUCKING EXHAUSTING.
I dream of having people around me that are super smart - and excellent writers and being able to say: try this, what do you think of this, can you produce something out of this concept? And getting to take all this somewhere.
Maybe I played it all wrong. Maybe I should have played the game harder.
I would have hated it. Oh, that’s an interesting movie. Not quite Sliding Doors, because ugh I’m just not a fan of hers, sorry. I admire what she’s done as a business woman, but not a fan of her as an actress. I’ve had this concept on my mind for a LONG time, but less trying to be hipster English movie. And making it straight up American movie where a woman chooses to settle down with whoever, someone she adores when she is young but it means giving up her career aspirations, has a family - oh yeah that’s basically 90% of the movies I watched growing up (I HATE THAT FUCKING SWEET HOME ALABAMA MOVIE PERFECT NAME FOR A PATRIARCHAL AWFULNESS - she had a hot career as a designer in NY and moves back home to watch him BLOW GLASS - the last scene is perfection, Reese Witherspoon must have hated the ending too because she looks MISERABLE at the end of a ROM COM).
In my own movie, the female character also has a timeline play out where she does her own thing, doesn’t settle down, focuses on her career (my life essentially). Does she end up hating her life both times? Does she end up accepting her life both times? Does she regret having kids? Does she regret not having kids? Does she regret letting someone go? Does she regret settling down young?
I find that all fascinating.
I wonder how that would play out. I can’t write screenplays. Dialogue intimidates me.
My FAVORITE movie idea, which I’ve had for years is a Freaky Friday except that a husband and WIFE switch bodies. She gets to experience how high pressured his world is, and toxic masculinity. He sees how complicated and harsh being a woman is.
It could be both funny, and very enlightening. Educational AND entertaining - my dream combo. I remember coming up with that when I live on 98th so around 2011? (That’s how I remember my life, based on where I was living). I even mentioned it to an actual screenwriter.
He was a total dick. A friend of someone I don’t really hang out with anymore. Talk about an entitled male.
He said it was a decent idea (thanks buddy). I wish I had that talent, to write that kind of thing. But alas, I’d need to pass that off. Music, too, can’t do shit with it. I listen to it ALL of the time because I love love love it. I think about all the ways people can use their voice, and how do they know when to have all these different sounds merge together and have it not only make sense, but sound so beautiful and work so well?
My classmates were talking about singing on stage, and I was like oh no, I have a terrible voice, no no. And they said: no, that would actually be funny, that could be part of the skit.
Yes, yes, I know, I finally found my people. And then I thought: fuck it, why am I saying NO when in improv it’s ALL ABOUT YES which is what I love about. YES YES YES So what if I sing on stage and sound terrible - who cares? It’ll be HILARIOUS. I’d rather do crazy shit and be funny, then stay at home, fretting about looking stupid somewhere. I did that for too long!!!!
Dang. DANG it’s liberating. Why do we have to have so many bad things happen to get to this place!!!!!!??
Ok, I have to stop writing, but I see what happens here. It’s very calming for me to write in here. To make a TINY bit of sense of what’s rolling through my head as I watch this nightmare continue to unfold.
It’s just not fair. I get that life isn’t fair, one of my mom’s favorite lines when I was kid - dang we really went 180 with the parenting styles didn’t we - “life isn’t fair, get over it” - kinda true, but kinda harsh who knows where the right middle is, maybe it’s always moving, or maybe getting it is impossible to get right, who knows I think of that mom that wrote a book on how to raise awesome kids, the mom of the 23 and Me founder, who happens to be a friend of a friend who offered to introduce me to her so I could get in a Google X study a few years back which I never took her up on it and now, of course, wondering if I should have. Something always happening. Something always unfolding. Some crisis to manage. I feel like I can’t ever catch up, there’s never enough time, I’m barely getting done what I need to get done, let alone being proactive, let alone finding time to get on a plane and find a doctor that can fix me. I don’t know is it all so hopeless? is there any point if someone like my dad can’t last a matter of months in this fucking system, but I can’t give up, what kind of lesson would that be for the kids things get hard, and you give up? Things get scary and you give up? No, I have to keep at this, even if I do lose my mind, then so be it, I keep going until either my body breaks down for good, or my brain. I have to accept that my brain is no longer such a reliable thing anymore. That it’s fragile like my body.
And also stronger than a lot of people I have to remember that too, remind myself of everything I’ve learned and how I’ve managed to create a tool kit on how to deal with all of this, and how I’m even writing in here, instead of freaking out or spiraling down well maybe I’m spiraling down now, but I’m at least creating some art and MAYBE something someone would like to read one day so that can’t be all bad. I just have to remind myself that I’m Stronger than. I don’t know. I only know that I wish I could talk to military that have been in prisoners of war camps. I want to know. How do they do it? How do they keep going when they’re being tortured. What do they hang onto? How do they protect their minds? Or is the trick to be flexible enough that you let it wander down, because if you hold onto TOO tight THAT’S what makes it break, trying to keep it where it used to be.
I guess there’s my answer. I have to think of my mind like my muscles - which are getting more limber by the day. I have to see the mind as malleable and that if one area gets too traumatized, I’ll create a new path, a new way of thinking about something.
I have no idea if any of this makes sense but that’s what I love about it.
If I don’t make it. Maybe it will be some sort of primer in Psychology 101. Hahahaha, that would be so cool.
“Here’s the brain of a woman whose body AND mind broke down around the same time. Now let’s study the text where she discusses allowing her mind to stretch beyond it’s capabilities, to see if that allowed it to manage the enormous amount of stress and trauma inflicted upon it. If you open your devices to page 42….”
Dang that would have been cool to be a case study in a psychology book.
I need to get into bed. I don’t think any more exercising is happening tonight. Too much.
I can’t keep my eyes open.