I’m debating whether I’ll share what’s happening inside of me.
Unfortunately, it’s not an emotional or mental thing that’s changed inside of me. How far does this have to go before others wake up? Do they not see?
The longer people take to wake up, the worse my condition gets.
If this crowd hears this, it will….
Well it’s not something people typically talk about. And it’s scary as fuck. If I was a regular able bodied person, it could likely be fixed up with a surgical procedure and I’d continue with my life.
This, for me, could be the end. Or more likely, I’ll end up with a bag. An ostomy. Which could end up being the best thing that ever happened to me. It could be so freeing.
But of course, I can’t help but worry that it will impact my personal life.
Then I think: WHAT PERSONAL LIFE. Sure, I haven’t allowed anyone close for awhile. But….BUTT
I don’t want to do this anymore. I don’t want to make these huge and heavy decisions.
My friend’s dad fell at an old folks home, broke his hip. They’d moved him FROM the assisted living so that this would NOT happen.
So not only would I be trusting someone to take a knife to me, I’d have to worry the entire time that there isn’t enough nursing staff or they’re using subpar disinfectant. Because bottom line!
BOTTOM lines are all that matters to way too many people. My life. My quality of life. Doesn’t mean much.
Unless I make it mean something.
I get it. I get that I’ve looked impulsive. Flighty. Fickle.
I can be all of those things.
To my own detriment most of the time.
There’s one though, who has known me since I was so tiny. He got the memo first.
He knew. What a strange child I was.
Because who knows what else is possible?
I may be flighty and fickle on the surface. But inside is a dogged girl.
Once I set my mind on something, I don’t give up.
If I lean into this, if I make it part of my story, if I control the narrative, if I’m the one that’s brave enough to share this sort of thing….
(what if nobody wants me)
(what if I can help even one person)
(what if I can help myself stay alive)
How do I become dogged about this particular thing? How do I say FUCCCCKKKKK it all!
I told my friend from improv because she’s super cool and open, and we managed to turn it into a bit! I mean, it could be comedy gold. It’s not funny to me right this second though.
But I think of Tig Notaro taking her shirt off on stage after she had breast cancer.
The crowd went nuts.
People love these kinds of disclosures - en masse, of course.
I’m still such a rookie, at improv, at characters. Still so so green.
Can I let one of those characters through in order to feel more brave? I wonder how do these actresses play these evil characters and then take off the make-up, put on regular clothes and go to the grocery store?
It’s not their own words they are speaking though. It’s not something that’s impacting their personal life - I don’t know this for sure because some of them do discuss how playing a certain character takes them to a dark place which does impact their mental health.
I’ve been studying these things for years. I had no idea why.
How do they use the language they’re using all day long at work and then switch it off? What happens if it gets murky? The play acting and reality? I suppose this is why so many artists struggle.
Oh those words.
My way into hellish mental anguish.
My way out of the darkness.
I can use them to comfort.
I can use them to inspire.
I can use them as a weapon.
I get it now. The mighty pen.
It’s weird how you can hear a saying for so many years, but it doesn’t really sink in until a certain point in life.
Kind of like the phrase we hear since childhood:
If they don’t like you for YOU, then they’re not worth being friends with anyway.
Maybe it’s better that these people have walked away already. Maybe they’re doing me a favor. In a therapeutic setting, we’d discuss how these people are informing me of their abilities. They’re informing me through their actions. I have to listen to it. Honor it.
Because if I go down this next road - that now seems inevitable because how else am I going to find what I need to find in the short amount of time I have to figure this out and prevent an emergency surgical situation - it’s better that they walked away now.
I don’t know how to find the words to convey the fear. I think I’d be less afraid if it was actual death I was facing.
Isn’t it what everyone says: well I know I don’t want to live crippled!
How stupid we are.
How complicated life ends up being.
When - oh I said when not if - I share this new development, people will finally understand why I don’t know how much I can take.
Or maybe people already understand this. I have no idea. Fucking codependency. Always thinking about how my words land, always worried about the impression I will make.
I can’t think like that anymore. I can’t be afraid of being loved. I can’t be afraid of being trolled. I can’t be afraid of outside reactions.
I have to dig down further than I’ve ever dug before and find the strength to put this out into the world. I know if I do, I’ll get answers, help, leads.
The medical system is moving way too slow. I just heard from the nurse at my gastro office - the scheduler will call me back. I’ll get on the books there. I’ll get on the books at the surgeon, maybe in a month, if I’m lucky it will be that short. All the while, my intestines are slowly dying. Giving up.
My routine, the diet, all of it, forcing them to do their job.
NO. YOU WILL NOT GIVE UP and yes I speak to my body a lot. More people should. As if our cells aren’t going to pay attention to what the brain is telling it. That’s not woo-woo.
That’s fucking science.
I’ve put this off for too long - the hunt for a magical gastro - and now there is no other option.
Well there is one other option.
Ignore it. Let it all go sideways.
So many people do. Put things off. Don’t go to the doctor. Try to sweep it under the rug.
I’ve seen it with my own two eyes. Many times over.
Friends, family of friends, I get it. It’s really, really hard to live this way, with my mortality staring back at me every day in the mirror. The grim reaper standing in my bathtub, smoking a joint, giving me a chin up hello in the morning. What’s up dude? Not today?
No, not today.
But maybe next month. Next year. Who the hell knows.
My dad shuffling around the kitchen all winter with his small cough. I never heard the bad coughing until the end. It was always worse when he was laying down, which is why I didn’t know how bad he was for so long.
My dad. He’d sleep like a turtle. With two eye masks! So small that sometimes you couldn’t tell if he was even in bed.
I keep asking my mom when she misses him the most.
She says on the way home from work. They’ve been driving together for awhile now. I think a good five years? Maybe longer.
I asked about night time. She reminded me that they never went to bed or woke up at the same time.
It’s in the car.
I miss him sitting on the couch, where I could holler from wherever in the house - always drove him nuts, me yelling from a different part of the house, I think he faked not hearing me more than once so I’d come to him - where is the Goo Gone?
This house houses everything. Every possible item you could possibly need. I wasn’t joking when people used to talk about coming here if the world fell apart.
It seemed so farfetched, that idea.
I know what to say to comfort people who want to leave their bodies.
I know what to say to the kids so that they can convert their depression into action.
I know what to say to help people navigate our fucked up medical system.
I KNOW WHAT TO SAAAAAAAAAYYYYYYYYYYYYYYYY.
But it means getting over myself. Getting out of my own way. Letting go of these fears.
I used to want the opportunity I have now. To have a platform that I can grow. I’ve spent so many years walking toward this and now that I’m here?
I’ve envisioned this metaphorical mountain for years - me climbing up, nothing to do with the ex, and everything to do with ME - and I’ve watched others peel off the path to pair up, have kids. Or change to a more low key career, whatever. They kept peeling off.
I tried! Many times. I want to go to sleep, I’d crawl off the path and curl up in a ball. plop myself down next to someone, use my backpack as a comfortable pillow.
Comfortable…I want to be comfortable so bad.
A storm would pick up, the winds would howl, wolves would start chasing me, something a little different every time.
So I’d grab that pack, throw it back on, and keep trudging uphill, looking longingly at the people waving from their comfortable homes, smoke billowing out of the chimney, a warm meal waiting for them inside.
My fingers chapped and sore, my feet full of blisters, my back aching from the long trek.
I’d wave back and keep on hiking.
I had no idea what it was that I was hiking to, just that I was supposed to keep on going.
Keep on going.
I swear it was 8:30am a second ago. How did my brain see an 8 instead of a 9? Geezus. My ride is coming in a half hour. Thank goodness someone can drive me to the iron infusion and then across the city to the visceral massage. The whole thing sounds exhausting. But it must be done.
My life keeps shrinking. I keep shrinking.
I am proud of myself for getting my weight back up. I wonder what will happen after I get off the steroids though.
I keep thinking I’ve made all this headway and then I see a photo.
Is that really me?
I listen to the recording with Sean, who has known me for so long, and I SOUND like me. I’m still me.
I’m still in there.
I know why I keep wanting tattoos. I want the outside to reflect all these changes I’ve had on the inside.
If I could get over this hump, I can then share what’s happening, the journey of finding the right doctors. Like I’ve said before, it would make the Kardishan show feel like watching cement dry.
HAHAHAHAHHAHAHAAAHAHHAAHAAA no drama needs to be manufactured over here!
Ok I’ll share it here and see how I feel about it for the next few hours since nobody reads in here, and I’m posting so early.
I think it’s a rectal prolapse. My friend figured it out. I’ve always suspected she was brilliant but chose a chill life after being raised as a doctor’s daughter - a brilliant doctor. The kind you’d sit in an appointment with and he’d start calling people all over the world! For real. He’d call his buddy in Europe, a friend in New York City, and consult with them on your case.
That kind of medicine is over.
Someone who works in the system says the new breed of doctors prioritize their workout schedule - for real, there was a patient that needed to get in and the doctor complained because she wanted to get to her Orange Theory work out or class or whatever.
I’ve only learned this recently. I do love those millennials. So much. But I don’t like this aspect of their generation. I used to poke fun of one doctor because he kept taking several weeks off for one conference. I said: I’ve been to those conferences, they’re not several weeks long, because most people need to get home to their private practice, their other work, their PATIENTS.
He didn’t like me poking fun of him. We had a moment.
I’ve noticed his schedule isn’t full of so many gaps anymore.
I’m like dude, if you want the business model where you have a private practice, ESPECIALLY when dealing with super sick people, you can’t keep leaving town.
He didn’t like being upbraided. Of course. Who does.
But this is how I stay alive.
The surgeon that was recommended that I meet with is someone I snapped at awhile back. It wasn’t major. They told me that it was not scar tissue causing my problems.
I retorted that they don’t have enough data to make a conclusive statement like that.
That was all. But of course, I’m so sensitive to even my own words.
(do they still like me?)
I guess I should get off here and call that office. Or maybe I’ll do that with my friend while I’m sitting and getting my iron infusion. I was hoping to do it at home but I guess you have to be in the hospital for this bag.
I hate going to the hospital. So much.
That was the last time I was in the hospital. The new ones, so pretty, so clean.
That pretty decor didn’t keep my dad alive.
I wondered. How the grief would change. I just want him back in the house. I want him shuffling around the kitchen and being territorial.
I was trying to get past my mom in the kitchen, and she was moving slow. She moves very slow. But she’s like the tortoise in that story. We’d joke about how my dad is the hare, hopping around, always moving so quickly but somehow both of them would both get tons of shit done, each moving at a pace that worked for them.
Anyway, if you were taking too long - something I’d rarely do, so many years of working in kitchens, I still, out of habit, move to the side and press my body flat against a wall when servers walk by me in a restaurant, you have to be still and not have any limbs hanging out while they pass with plates, or in the kitchen, with knives and large pots of hot food, very still, no sudden movements except for the one to move out of the way, it’s so unspoken, it just happens - my dad would do this exaggerated sigh to let you know he was waiting to pass by you.
I told her I miss all the annoying things. She was surprised. Funny thing, grief. We all do.
I just saw a message from someone slide into my computer and disappear, she is asking if I’d be open to a medical medium.
Then I remembered that my dear old camp friend - the best - offered to talk with a friend who does this kind of work. I’m sure many people will think that’s so silly or witchy or whatever.
Well they’re probably not afraid that their intestines are falling out of their body. So.
I’ll take whatever ideas I can get right now. It’s a donated appointment so why not? I feel like I could get more information from someone that’s good than I would going through mainstream medicine for several years.
Several years. Do I have several years? Maybe I HAVE been writing since 8:30am. I think I’m writing so fast, but I look up and all this time has passed. I get lost in my own words, so often.
The terror. The idea of going under the knife. The idea of sharing this more publicly. I’m trying to get used to the idea. That’s why I told my improv friend. Why I’m writing it here. I have to go. I have six minutes to prepare my bags for the hospital. It’s likely we won’t have time to stop by here before the next appointment so I already started packing my bags last night. I know the drill now. After I ended up not seeing the doctor last week and going to the IV appointment instead, I know I have to bring ALL my stuff with me, even if I think it’s going to be a couple of hours.
I can’t afford to get trapped somewhere without supplies.
Even last night, at the bar, I didn’t want to buy the $4 root beer and left my lemonade in the car. I start to get light headed and a little wobbly. I have to sip something with a little sugar all day long. Especially in this weather.
i can’t believe Vashon is likely canceled for this week. I guess I knew there was a chance. I can’t believe I made this trip up north for next week. Can I do?
Should I do it?
I think it’s too late to get a refund now. I can’t remember the rules.
I should probably just go.
Four minutes. Fuck.
Do i push publish? Or take it down? I can’t remember how to log into this account on my phone.
I tried when I was freaking out about something else I wrote.
I’d better get used to this.
I refuse to let my fears and embarrassment shorten my life.
That is so not who I am.
If it scares people off, then it scares people off.
I might still be alive, and that’s all that really matters right now.