Category Something Real

342 posts

More Feelings I Guess

On the interwebs I’ve been doing some of the goofy “it’s been a decade, what’s the then/now of __________” memes. The decade of hair is one of my faves.

In a lot of ways I still struggle with feeling inadequate or incompetent because I feel behind my peers on so many levels. That sense of sheer overwhelm I felt when I started writing here in 2009 hasn’t ever fully dissipated, it’s just (drastically) changed shape. I don’t know that it will ever go away and I’m beginning to think that this sense of existential anxiety is probably not uncommon.

The last 10 years have sort of gone as expected but in completely unexpected ways.

10 years ago when I imagined my adult life I envisioned a reality where I didn’t have kids (), had my uterus out (), went to college (-ish), traveled around the country and planet (½✓), lived in an apartment in a city (), made art (), found a sense of belonging (), continued doing grassroots organizing (), had a meaningful and healthy social life (), and was accepted and loved for who I am and would become (✓✓✓).

I didn’t set out to become an advocate for the rights of homeschooled children.
I didn’t intend to become so outspoken about my upbringing
(and I really hoped it wouldn’t ever be relevant).
I never imagined I would get divorced or become estranged, let alone go to trade school, and also experience ALL THE THINGS at school.
I didn’t know how extremely queer I was, let alone that I would start HRT.
After spending my years in Maine mostly outside of local politics, I didn’t expect to move to CA and dive into housing abundance and community organizing (though it shouldn’t really have surprised me).

Now, I find myself sitting in an alcove in the airbnb I’m staying at in Akron, Ohio after walking through the snow for several hours; thinking about what my next steps will be going into the new year and starting another decade. What changes await me in the next decade? Who will I grow into? What will I do? What do I want to do and become?

These existential questions have been hanging over me since I dropped out of school. I haven’t had a lot of the bandwidth to answer them, I’ve spent so much energy just trying to survive let alone map out an idea for my future. In September I confided in my therapist something I’ve been afraid to admit out loud which is that: I didn’t see a future of myself past the age of 30 or so.

Now that I’m in Akron again that’s starting to change. I’m getting glimpses of a future where I can be and not just survive but have the opportunity and bandwidth to grow and thrive and make art and be an activist without having to spend as much energy worrying about getting displaced or not being able to buy groceries.

What I want most in the next decade is to become financially secure (either by freelancing, growing my patreon, and/or finding a job with good health benefits); I want to do more writing (here, professionally, and more patreon exclusives) and make more art (I started an etsy, want to make more comics, and get back into filmmaking); improve my health and get better at this low FODMAP thing (and start making resources around it, because let’s be honest, I can’t not); I want to learn spanish and brush up on my ASL; I want to continue to organize for change in whatever ways I can (because organizing is like breathing and I live for it).

I don’t know what the next year, let alone the next decade, is going to hold. I don’t know if we’ll have a habitable planet or a recognizable country by the end of it; but I’m taking comfort in the knowledge that I have friends and chosen family all over the world – I’m not alone, I bring passion and experience to improve wherever I inhabit and share with everyone I can, I will continue to trust my instincts and be guided by kindness and empathy.

I’m entering 2020 in a better place than I entered the 2010s. I will do everything in my power to enter the 2030s in the same way.

The Feelings Part 3

I’m trying to see this period of my life as a good thing – an opportunity to unpack the trauma I’ve been avoiding and do the healing I need to do. I want to be able to take this mystery condition that I still have zero answers to in stride and not be angry and grumpy and depressed about it, but I am not there yet.

So much of my day to day is currently consumed by pain and fatigue, it’s impossible not to get upset and discouraged about it sometimes. But I am also learning some good things, like:

  • I am extremely loved and cared for by people I’ve never met (thank you, holy shit <3)
  • I am really good at choosing my family and have a strong community
  • I have the capacity to be more present with people I care about

I feel guilty and self-conscious about being so open with the giant trigger that is living my life with a ghost disorder that also constantly reopens trauma. I feel guilty for making the decision to step back instead of plowing through, because on some level I still feel like I deserve to suffer and actively choosing against that feels like blasphemy.

So much of my CPTSD is manifesting in my body and my instinct is to take all of that angst out on myself instead of understanding that none of this is my fault. I worry that by being open about the infinite layers of pain that come in waves is too much and that I’ll just wind up drowning people in my whirlpool of depression. But then people reach out to me to say that my candidness is helpful. My community immediately reminds me that I don’t deserve suffering and taking care of myself is the right thing to do.

So I’m trying to keep that perspective: I deserve to take the time to heal and get better, and doing so doesn’t make me an awful terrible selfish person (fundamentalism is still clacking around).

I’m discovering a lot of very specific traumas that this whole illness is sitting on: There’s medical neglect and anxiety, and then there’s the deep seated fears that resting will get me in trouble, that I am a nuisance if I can’t do what I usually can, that I did something to deserve this, and that I’m useless because of it. Doing The Work of trying to heal 18 years of bad experiences while sick is exhausting, but I’m trying. I think in some slow small ways I’m succeeding.

I’m still getting eaten alive by brainfog and anxiety and the grief that accompanies realizing that I really am disabled and I really do need help, but I’m Doing the Work, and I’m asking for help, and even on my worst days (like today when nothing touches the pain) I can tell that I am loved and I will eventually be okay. It might be different, it’ll take me a while to get there, but I can at least imagine getting there, and that’s progress.

The Feelings Part 2

I’m feeling many ways about my disabling illness. There’s a good bit of anger, a lot of exhaustion, 6 feet of grief, and a lot of anxiety around whether or not I’ll get better.

There’s a part of me that has resigned itself to this new normal and a part of me that really wants to fight it. But the biggest part of this equation is my complete exhaustion.

Cortisol labs were inconclusive so I have to do the entire test again and follow it with an 8am blood draw to confirm whatever the results are from the spit test.

My doctor did say that it seems like I have IBS (shocking I know) so she gave me some Omeprazole and Dicyclomine to help with digestion (and I have since eaten 3 meals without feeling nauseated!) and Banophen so I can sleep. I’m hoping with rest and the ability to digest food my body will calm down a minute but I’m not sure. Everything went extremely downhill after my endoscopies and I don’t think my body has recovered from that trauma.


I still feel very lost. I’m trying to focus on making art because it helps, but I miss school, I miss all the things I was doing on campus. Being relegated to the couch all day because I ran an errand the day before is really demoralizing and upsetting.

I’m very sad because I feel like I’m missing out on so many things. I feel like I’m letting people down when I flake because my body just decided to quit at 4pm. I’m sad I can’t be doing all the things in all the ways I want to be. I’m sad that this is so hard and it takes such a toll – not just on me, but on everyone I care about. I wish it didn’t. I wish I could live my normal life but instead I don’t know that I will ever get that back and it’s terrifying. The FOMO is hard and real and I don’t really know how to cope with it.

Having an invisible disability on public transit is really hard. I know I look healthy and young and spry, so I don’t sit down when I should because I don’t want to deal with people judging me, despite the pain. I don’t want to ask for help because I look like I shouldn’t need it. I still try to do as much as I can by myself because I don’t want to believe I’m not well. Which is really counterproductive.

I realize that I need help if I’m going to make it through the recovery process without drowning in debt or dying from financial stress, because being sick like this makes looking for a job completely infeasible.

I live off my patreon, the podcast and a side gig which totals to about $900/mo….in the most expensive part of the country. 75% of my income goes to credit card bills and the rest is divvied up between transit passes and groceries. There are supplies that I need to make cooking and baking (mostly bread and hummus) possible so I don’t have to take a bus to buy a very small very expensive loaf of gluten free bread, but I can’t afford those either.

If you’re interested in helping me survive this terrifying journey there are a bunch of different ways to throw money at me and get varying levels of art in return (along with my undying gratitude):

  • Support me on patreon! Patrons get access to download the files and behind-the-scenes updates – there’s currently an exclusive video of me reciting this poem. If I can reach $1k/mo on Patreon I will be able to sleep better at night and not feel like I should skip eating to save money.
  • I listed some of my paintings for sale on Etsy
  • I have an amazon wishlist of supplies that would make my day-to-day easier and enjoyable.
  • I can be cashed or venmo’d a cup of coffee or gluten-free groceries.
  • If you need a professional cat-herder to help you organize remotely or set you up with WordPress, I’m also looking for work.

My plan right now is to lean into art and let that bring me life while I continue to play this constant testing and waiting game of 3rd dimensional chess.

The Feelings Part 1

Shit has been rough.

Up until last week I was able to use school as a distraction from the mystery that is rampaging my body. I sent out letters to everyone over last weekend saying I’m dropping out but staying around until the end of the month to tie up all the loose ends. I have since lost most of my fucks for meetings which is both good and bad. Good because it keeps us moving along and productive, bad because I forget that this is entirely new territory for the rest of the student cabinet and I want to be much more patient than I feel like I am. Although, people have been thanking me later for my tension diffusion skills so maybe I’m just really hard on myself.

I am really hard on myself. I’m even harder on myself now that I’ve dropped out of school, as if dropping out somehow nullifies the health issues that required this decision in the first place. I’m not instantaneously better after removing the stress of school (which is obviously a ridiculous expectation), and I feel like I’m getting worse. But is it worse because it’s worse or worse because I’m finally staring at it?

I think some of this is that since since I’ve removed my consuming/enabling distraction the only option left is to look this problem in the face and confront how bad it really is.

I feel like I am losing so much that is important to me. Even though it’s my decision, it doesn’t feel like a choice (which in a way is its own progress). I’m so tired of fighting for e v e r y t h i n g only to have it fall apart.

I’m losing my memory, and it’s gaslighting. I can’t remember a story I heard, or a story I told 10 minutes ago. I can’t remember words or how to give directions clearly, I can’t remember where I am in space or what I was going to do 10 seconds ago. I’ve always had this occasionally, but it’s been really bad lately. I’m frustrated with myself because I see these things happening and I am unable to stop it. I can’t remember the word that’s on the tip of my tongue, my body and my brain are so disconnected right now.

I haven’t slept well in ages, which is likely a contributing factor to the memory and spatial reasoning. I’ve also been in a CPTSD flare for months that is really hard to come out of, because the dietary restrictions I have now taste like the cult. I want to take the test for a motorcycle permit but I don’t feel like I can rely on my memory for a quiz right now. That’s how deep in brainfog and fatigue I am.

Meanwhile, every single test we’ve run so far has come back normal. I have lovely, photogenic, nonproblematic organs that literally cannot digest food without immediately making me nauseated if I forget to take an enzyme.

As much as I hate it, my body is at least proving dropping out so I can navigate this shit was the right call. I have so much anxiety about all of this too, but that’s another post entirely.

Pause

I sent all the emails on Friday that told everyone who needed to be told that I’m dropping out for my health.

I’m too sick to be in school and on campus so I’m dropping out. I have been stuck in a shame fueled depression since I made this decision even though I know it’s the right one. School has been so hard but also so good. I miss it and I feel lost. I have other projects but my depression ate my motivation and I need it back.

Most of last week I spent trying to come to grips with it, and talk about it in a way that wasn’t utterly depressing. Everyone at school has been super supportive and not angry at all, which is the anxiety that was eating me alive. But I’m still really sad and really devastated about it.

I don’t have the energy to get into those feelings right now, but the words will come soon.

Semester No. 5

My semester begins tomorrow. I’m very anxious. My body has been tense all day…all week, really. I’m not anxious about my classes – I’ve re-evaluated them thrice now and I’ve taken my health and spoons into account so I’m only doing one in-person class (US Government), and two online classes (English 5, and Cultural Geography) in addition to my Student Government & Laney Queers organizing and my independent study (which is essentially writing down what I learn in the student senate).

I’m anxious because this is the first week of school and on Wednesday I get snake cameras and sedation instead of doing fun Welcome Week activities, on Tuesday I meet with my department chair and have my first class while on a liquid-only-diet and then get to drink the colon cleanse “juice”.

I think I’m more irritated that my first week as a senator is going to be interrupted by being sick and there’s nothing I can do about it than anything else. I’m realizing a lot of my life is going to continue to be interrupted by being sick and there’s nothing I can do about it and it’s really just…. quietly devastating.

That knowledge hangs on me like a heavy jacket twice my size. It’s with me every moment of the day. It envelops me when I struggle to put together a meal because I can’t get out of this fatigue and brain fog regardless of how long I close my eyes. I’m quietly haunted by my own ghost that I can’t figure out how to release.

I don’t know how I’m going to get through the next semester. I don’t know if my body will hold together or if I’ll have to drop out. Everything feels so precarious and I’m so so exhausted.

So tonight I managed to make myself some Gluten-Free low-ish-fodmap peanut butter energy bites so I can at least have something to munch on during the days I can eat solid food. Doing post colonoscopy Kieryn a solid.

ha.

Whirlwind

Everything has been a whirlwind since school let out for the summer and it starts up again in 3 weeks but I am still reeling.

The rug was pulled out from under me in June when I went to the ER and was diagnosed with Colitis but couldn’t see a GI Specialist until the middle of July. As it stands, I have an endoscopy & colonoscopy scheduled for my first week of school when I’m supposed to be doing Senate-y things, but it was the soonest they had available so here we are.

My new PCP is helpful and working with me on the diet changes through this process, I am emailing her a weekly check-in on symptoms which is very helpful considering her next available appointment for a followup is in September.

I have learned that, apparently, what my body needs right now is to be Gluten Free, LowFODMAP, and vegan….which feels impossible even though it isn’t actually. I was miserable all last week because I stopped eating normal bread, but on Sunday I found some ($$$$$$) Gluten Free bread mix (and then had a minor breakdown because needing to be GF is breaking my budget). The bread I made (with this recipe from the bag and some rosemary) turned out surprisingly well and now I need to acquire better baking equipment and supplies so I can get through this semester in one piece.

On top of that fun health spiral, my degree program is unlikely to survive, and all of my degree classes were cut for this semester. Additionally, Peralta is not doing well financially so most of this week I’ve spent in a mild panic talking to Deans and coming up with a plan for graduating by next December.

I even made a spreadsheet for it

After talking to the Dean of the department I’ve decided to switch majors from Labor Studies to Political Science, this way I can get my AA and transfer to a 4-year that has a Labor Studies equivalent.

My next steps are: Meet with a counselor to get an updated SEP, and then meet with the Department Chair to go over both an Independent Study plan and figure out how to get my LABST classes to count towards my Political Science degree.

Aug 1 is my first day of being an ASLC Senator, which is a 2 semester term. I’m having a lot of feelings about changing majors, and being a senator, and gender feelings about how my problem was immediately addressed without my having to over explain the situation entirely because I was being read as male, and being sick and how that’s going to go down this semester (and how am I going to get through the first week of school while doing colon prep?), and and and…. I want to write more about that later but I am too exhausted and more importantly….

I HAVE ADOPTED A FURCHILD.

Peridot the cat sleeping on my bed

Peridot is a 2 year old tabby mix who was described as dog-like and is utterly perfect. Peridot even has an instagram so go subscribe for some good catte content: https://www.instagram.com/peridotfiercewater/

View this post on Instagram

Yarnz r mine

A post shared by Peridot Fiercewater (@peridotfiercewater) on

Scared

I am fucking terrified. 

This week has done a number on me emotionally, psychologically, and physically. I’m so tired of thinking about it that I barely want to talk about it. But it’s the background radiation of my life and I am having FEELINGS right now and it’s frustrating because it feels so isolating. 

Reynaud’s apparently flares with stress so I’ve been freezing and while I have done zero strenuous activities all week, my body feels like I’ve been fighting bears and climbing mountains. 

I feel awkward and sheepish for being (what I imagine is perceived as) alarmist when I look at everything that’s happened this week and tell people it’s only going to get worse from here so we need to start preparing. Not awkward enough not to say it because the worst part about it is I know I’m right. I’ve read history. I grew up on Pence’s side of the aisle, I know how to read the writing on the wall, I can hear the dogwhistles in their approaches. I know what to look for and I know where they want to end up. I can’t know the future, but I sure as hell know the direction we’re going right now. 

And I am fucking terrified. I haven’t been able to bring myself to admit it out loud but I am scared. My body has not stopped being tense for a week, I find myself holding my breath and not realizing it. 

I’ve thrown myself into campus organizing. I worry a little bit that I seem like a conspiracy theorist but at the same time, IT’S ALL FUCKING HAPPENING. That’s what I hate about everything; and that more than anything is what gnaws at me in the night. 

I KNOW. I KNOW because I was there. I was trained to be part of the movement that made this happen. This feels personal to me in a way it is not personal for most people and I’m having a really hard time handling those feelings. I wasn’t important, I left before I got to play a role, but I was being groomed. I knew the rhetoric, and the strategy, and the hopes. When I left I hoped all that would stay behind too. Like somehow it would disappear because it left my conscious and surely the majority of America wouldn’t let that happen.

But it didn’t. They started winning. A lot. And now we’re here. 

And I’m scared.

Hysto Date!

HOLY SHIT.
I’ve been wanting  needing to get my uterus out for years. I have talked to so many doctors about this, and about sterilization before that. I will document the process that I went through to get here later, but the big news is:
Monday, July 30th, 2018, at 9:30am I will be undergoing a total hysterectomy with bilateral salpingo-oophorectomy which in english means: it’s all coming out. No ovaries, no cervix, no uterus. GONE.
Gone and donated to science but maybe I will ask for a picture or something to burn later.
On Thursday, I’ll be meeting with the surgeon and sometime after that talking to the anesthesia people about what I need to do to prepare.
I’m not sure what all I will need (probably pads, soft things, a ton of gatorade?), but if you want to help me out, you can donate to the hospital/recovery/prep fund here: https://cash.me/$kieryn or https://www.paypal.me/mxdarkwater 
 

If I had a quarter for every time I sat down to write and the first sentence was something along the lines of “I need to write but the words aren’t coming” or “every time I sit down to write the words vanish” I wouldn’t be as broke as I am now.
It seems to be a good way of getting through the block though – acknowledging that it’s hard, that there’s resistance, that there’s something in the way of me and my words. There’s something behind them that requires energy, there’s something more to work on and process.
Writing is a part of that process, but sometimes it has to start with a long hard look at reality: it’s sometimes really fucking hard to write because the act of writing and digging through my brain is as exhausting as it is helpful.
So much so in fact, that this is currently all I can manage.
I am an ocean of feelings and exhaustion and thoughts that don’t have sentences to them.
Soon though. I will have many long rambly posts about what the fuck this semester has been.
In the meantime, enjoy a doodle.