I’ve started and stopped more posts than I can remember in the last month since COVID19 ate everything.
I’m trying to find humor and light to what feels like my religious upbringings’ flavor of tribulation coming to pass in real time.
I can’t. I’m not going to try anymore. Today I am angry and hurting (stress migraine and raynaud’s flair and cptsd is locking all of my muscles so tightly) and I just cannot.
Everything sucks. The world sucks a lot. I want to be writing more eloquently about what sucks and why it sucks and how we can make it stop sucking but I can’t.
Oakland has been observing Shelter In Place since the 17th. I’ve been working on CRHE’s COVID response, joining the mutual aid network developing on my block, checking in on homeschool alumni who are all just as triggered as I am, building community on discords and slacks, and trying to navigate my own healthcare on top of this (which was one of today’s many nightmares).
Despite all of this, doing all the right things – staying in, organizing online, staying 6′ away from people when I do need to go out, having zoom calls and hangouts, playing animal crossing – I feel so lost and tired and a little hopeless.
I still cannot get my testosterone patches that would make the next indefinite period of sheltering in place manageable. I have two backup plans in the works but they still involve injections and I’m so tired of fighting this battle. It should not be this hard and I am so stressed out.
CA does not have statewide renters protections yet and rent is looming. Newsom talks a big game but his actions amount to less than helpful.
Oakland and Alameda County have not fully stepped up to plate for this either. First steps are coming on Friday for an eviction moratorium that does not suspend rent (to my knowledge).
Kaiser (the biggest hospital group in the east bay, based in oakland) is threatening to fire nurses for bringing their own PPE to protect themselves so they can treat COVID patients.
I want to be able to be sewing masks but the brain fog from cptsd flare makes understanding instructions impossible and I hate it.
I cope with trauma by out organizing it. I don’t have the capacity to out organize this fucking pandemic and that’s fucking with me.
What I am trying to remind myself is that it’s okay to not be okay.
After 2 years of fighting to get tested and treated for the sheer inability to focus when I need to on the things I need to, I finally found a psychiatrist who listened to me and prescribed me the babiest dose of Strattera. I’ve been documenting it, as I do:
This is day 2, and my brain IS SO QUIET. It feels like a relief.
Yesterday I caught up on projects that I have been putting off for months, and today…I have nothing? on my to-do list? And the constant nagging anxiety about forgetting something has been muted. Such that I feel like I can actually enjoy the fact that today is a quiet day, without guilt?!
It has been such a long and devastating fight to get here, and I’m so relieved that I could cry. Instead I think I’m going to actually relax this afternoon? for possibly the first time in my life?
Blessed are ye, when men shall revile you, and persecute you, and shall say all manner of evil against you falsely, for my sake. Rejoice, and be exceedingly glad: for great is your reward in heaven: for so persecuted they the prophets which were before you. — Matthew 5: 11-12 (KJV)
Or, in my parents translation:
You’ll know how good (#blessed) of a christian you are by how hard your life is: how much you’re being persecuted, and how many people are angry with you. If your life is full of suffering, that’s god showing his love to you. Take joy in that suffering because you will have the most treasures when you go to heaven.
In practical, lived experience terms, this looked like watching my parents choose homelessness because they believed god told them to pay a friend’s mortgage and they couldn’t do both. God got the credit for my grandparents saving us by pulling some strings for a place the day we had to move out.
This looked like being kicked out of churches every 2 years after leaving the cult because my parents would get in an argument about faith healing with the pastors and swiftly shown the door. This was proof that we were right and doing the right things.
This looked like watching my parents make financial decisions based on how much stress it caused them, which they interpreted as a sign from god that this was his way.
Heavenly treasure isn’t really a comfort to a child who instantly lost contact with every almost-new-friend they were making. It does nothing to quell the anxiety about how to keep track of 4 siblings on the streets. That promise felt more like a curse as I aged, but I was never able to see it that way because to do so was blasphemy and called my eternal salvation into question.
It’s not that it didn’t occur to my parents that maybe the choices they had were ways to provide for our family and live in relative security and comfort (which is also blessed by god!), they believed that was sacrilegious and we were called to suffer.
“For even hereunto were ye called: because Christ also suffered for us, leaving us an example, that ye should follow his steps:” — 1 Peter 2:21 (KJV)
Because Jesus suffered for us, we are called to choose suffering; so we can be an example.
Add that to being raised inside extremegenderroles and taught (+ reinforced by experience) that it would be sinful for me to pursue a future that would make me happy, a future where I had autonomy and independence. Not only would that be sinful, but my life would be awful and my salvation rescinded, which makes for some really interesting results in adulthood.
By interesting I mean, the struggle is extremely real and it never had to be, but that was out of my control as a child and now I have to live with those consequences.
This is the crux of what I’ve been working on in therapy for the last 3.5 years now.
Between Spiritual Abuse and CPTSD, getting divorced, moving out on my own with no education or much in the way of job experience, life has been hard. Harder than it should be.
Magnitudes harder than it is for folks whose parents didn’t intentionally stunt their education to force them into a life of 1950s-meets-1800s in the 21st century after looking at their infant’s genitals and deciding that’s all they were good for.
I turn 29 this month and I feel like I’m suffocating from shame at my lack of education and abilities, and poverty; neither of which are my fault, but both of which I get to carry because of choices that unlike my parents, I did not get to make.
My parents chose to put me and my siblings at risk, they chose to keep basic life necessities out of reach, they chose to shame and guilt us for expressing needs and wants, they chose to punish and squelch any form of independence including employment, they chose to reinforce that my time and my energy is worth nothing by making me return payment to neighbors who wanted to hire me to watch their kids, they chose to spend 18 years of my life telling me that I am worthless and deserving of nothing.
And here I am at almost 30, working my ass off and making my chronic illness worse just to survive and yet constantly getting in my own way because the instant I make a decision that would better myself I panic. I internalized all of their choices because I had no exposure to anything else as a child, so clearly I was the one in the wrong.
Those lessons that my parents taught me? About how I need to follow in their exact footsteps, give to the point of harm, cast aside my dreams and stay at home to support other people? Even though I am extremely aware that they are all 100% lies, 100% abusive, and 100% meant to keep me in line with their plan that never ever included me? are still there.
They’re still powerful and strong and loud in my head every time I get rejected or ghosted on job applications. Reminding me that I wasn’t “meant” to do this. I wasn’t “meant” to be self sufficient, I was trained to be a helpmeet with no needs or wants.
I know better now, but those beliefs are still stuck to my core.
So it’s really devastating that when I do make choices to free myself (getting divorced, moving to CA, starting HRT, starting school, applying to jobs, doing the hustle), I spiral and fail because I haven’t yet learned the skills required to succeed. Unlike people who went to school and had jobs and income that was theirs to manage before being thrown into adulthood with debt and bills.
I am so good at what I do, and it’s so difficult to be able to survive well enough to do it. I’m trying to do all the right things, I go through the right motions – I apply to jobs, I write really good cover letters, I volunteer, I make friends, I was a year out from getting an AA! I have multiple income streams between patreon, and podcasting, and freelancing gigs. I work until I am exhausted and I am nowhere closer to being able to provide for myself let alone support others the way I desperately wish I could. *
*this also probably has to do with things I internalized as a child being taught about masculinity that I also need to hash out, but that’s a different topic for a different day.
Which is where the lies come back into play: that there must be something wrong with me or something I’m not doing, or maybe my parents were right all along, and maybe I am worthless and only meant for domestic duties because that was all I was ever allowed to be. I’ve been out for almost 11 years, and I have grown so much, but I’m still so far behind my peers. On bad days, I can’t help but wonder if that’s because I’m still wrong somehow, even though I know that’s a lie.
Every time I get close to “making it” something happens that strips it away. My politics aren’t pure enough, or my health plummets and ruins my ability to work and even function, or fascism intensifies….it’s a struggle to not see those coincidences as signs confirming my parents’ worldview.
When I get scared and triggered in the same way I did as a powerless child, I find myself defaulting back to those thought patterns…everything bad that happens to me is a punishment because I’m out of alignment with “gods will.” If I were in-line with “god’s will” then….these things would still happen (per my parents’ view) but I would be less scared about it?
The faith arguments really don’t hold up for more than 10 seconds after I start thinking about them, but that doesn’t make them go away and it doesn’t make them feel any less real.
That is the most insidious part about spiritual abuse: just because the faith has been left and the arguments don’t hold up against basic questions, doesn’t mean that the roots of these beliefs went away. Especially if this was instilled through the entirety of childhood.
Simply knowing a belief is wrong doesn’t magically vanish it. Which I find rude.
If there is one thing I’ve learned in the almost 11 years I’ve been deconstructing here it’s that all of these have to be fought, and it’s not a one-time thing, they come back. For me, fighting looks like this. Exposing these lies to daylight by writing about them candidly weakens their power. Something about seeing them outside of my head makes the beliefs easier to let go of.
Maybe it’s a professional mistake to be so open about this type of fighting, but silence hasn’t saved me (or payed rent) and if I were to guess, I’m not the only person facing this type of dementor.
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 (✓✓✓).
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.
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.
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.
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 losingso 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.
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 haveotherprojects 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.
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.
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.
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….