One day soon I will have the bandwidth to sit down and write out the things that are stirring me lately, but in the meantime here’s the cliffnotes of the last since April, I guess.
The neighborhood group I’ve been organizing with since Shelter in Place started, Alice Street Mutual Aid, had a really successful food drive a couple weeks ago!
I spent about two weeks organizing it with my neighbors. Everyone who participated was really touched and grateful both to have something concrete to do and also to have an immediate need met. I got to meet some of the folks I’ve been working with on slack and seeing on my screen for weeks in person (safely, masked, 6′ away), and it was so lovely.
If this is something you have the capacity or desire to do and want to talk about how to make happen I’m always down to talk shop, just leave a comment/send a message/DM me on twitter.
My partner and I made history (on 6/9) by becoming one of the first nonbinary trans couples to get a Registered Domestic Partnership in CA. Up until Jan 1 of this year, in order to get a Domestic Partnership in CA you had to be same-sex. Sen. Scott Wiener (the same senator who authored the law that allowed me to change my gender marker to X on my license in Jan 2019) authored the bill to change the law so it’s not a question even asked anymore, which meeeeeeeeeans
We have all the rights of a married couple recognized by the State of California in areas such as: healthcare (and taxes and etc). A Registered Domestic Partnership is different than a marriage (legally) in that it is easier to undo and not federally recognized, so we’ll cross that tax bridge with an accountant when we get there.
On my ever growing list of topics to write about is how an RDP is different from being married for me, and how it’s healing and also an example of how our social structure is fucked up but the meaningful part of this is:
Neither of us have to worry about our families of origin having any say over our healthcare if bad things happen, AND more importantly that also means *drumroll*
I have access to Kaiser’s trans clinic.
These last several months have been legit nightmare mode for HRT + my general health. I feel terrible and am so tired, but I found a doctor at Kaiser who seems like a good fit and Kaiser just blanket covers the kinds of HRT I have been fighting so hard to get for the last 2+ years. I’m overwhelmed and relieved.
As Shelter In Place continues I feel so listless. I miss going places, I miss making plans and then doing the plans. I miss being around people. I miss hugging my friends. I’m grieving because given how poorly “reopening” has gone I don’t know if I’ll be able to see friends outside of my immediate vicinity or even leave my city before next March.
Along with the existential dread, my depression is making a comeback which I think is related to the fact that I stopped taking bupropion to start Straterra in February. Straterra has been super helpful in enabling me to actually get anything done during these plague times, but trazodone is not strong enough for the depression and CPTSD flares that come with being a responsible human bean in the middle of a pandemic.
A lot in my life is looking up right now, despite the plague, but it feels so distant. All the things I usually do to help feel pointless and hollow; which is a sign to me that I’ve kept depression at bay on my own for as long as I can and it’s time to get help for it. Thankfully tomorrow is my first appt with the new Kaiser doctor so hopefully we can figure something out.
Things haven’t gotten any easier in the last month. Every week feels like at least a decade, and I’ve been dealing with blow after blow, just trying to roll with the punches.
But I am exhausted. I tried to take a Quarancation last week but it didn’t work out as well as I’d hoped. A young, queer, badass organizer acquaintance of mine got caught in some gunfire in SF and didn’t survive, social media was particularly toxic, and I had two interviews (no luck). It’s been rough inside my brain lately.
I feel lost and at loss.
It’s hard to fight existential dread with hope when hope is hard to come by; and I keep failing in my attempts to reach some kind of financial stability. It feels easier to give up. To resign myself to the exhausting freelance hustle that I’ve been doing for the last 4 years instead of continually trying without success to get hired in a traditional job with hours and benefits and a fair wage. But I don’t want to continue this dance with the abyss. I want pay and benefits and reliable hours. I want to be able to provide for myself and my family, it devastates me that I can’t seem to hack it.
I feel like it’s a failing on my part that to even get to the point of an interview I have to work through decades of trauma and lies my parents told me about work and relationships and whether or not I am worth being paid for my time and energy.
When I interview and get rejected, even nicely, it feels like they were right: Maybe I am worthless and undeserving and unskilled Maybe I don’t deserve stability or self-sufficiency Maybe my lot in life is to suffer at the base of the hierarchy of needs for ever, because that’s all I was ever equipped to do – that’s what years of not being allowed to accept pay for labor, belittlement for external success & competence, and suffering the consequences of bad financial decisions at the hands of my parents has conditioned me for.
But I don’t want that to be true; I just don’t know how to make it untrue.
In these plague times, I and my partner(s) are high risk, so it’s not safe for me to get a job at a grocery store or coffee shop where I’d be interacting with the public at-large who somehow don’t seem to understand that the mask has to cover both nose AND mouth to be effective.
I’m just exhausted and sick with anxiety even though today, I’m financially okay. There’s no guarantee that will be true in a month or two. I’ve applied to work the census and be a contact tracer, and have heard nothing on either front. I know the answer is to continually apply and interview and send resumes to everything I see because maybe there’s a chance, but I am out of hope that a chance like that exists for me right now.
I know that depression is a lying liar who lies and I am competent and good at so many things from websites to grassroots movement building, I’m hard working and driven and self motivated, and yet. Everyone is happy to benefit from my labor and zeal but I can’t get hired to use or grow these skills and stay afloat.
I keep organizing because that’s how I move. It doesn’t pay but it’s something to do that can eventually improve the quality of life for myself and others. I keep doing the hustle because I need to survive. I somehow make an impact and impress people with my ability to get things done, but can’t consistently put bread on my table without help and after a while, that just gets to me.
It’s a trigger because it makes me feel like that the work I do is appreciated, but I am somehow not worth the monetary investment in sustaining myself or developing my skills. I know this is a lie because my patreon exists and I am eternally grateful for everyone who is able to continue supporting me there, as that has been the most reliable stream of income I’ve had since moving to the Bay and I wouldn’t be able to even survive without it (so thank you).
But sometimes life just hurts and lies feel like truth, and I’m feeling that a lot right now.
I’ve been managing okay focusing on creating resources and organizing my building and my block…until today.
Today I feel sideways and depression is loud and all encompassing and I am tired despite not doing much. I lost my balance while doing a grocery run today which was the first time I’ve left my apartment since Friday night at 9:30pm, which kinda just added to the chronic pain flare I’ve already been managing.
In therapy I keep coming back to discovering trauma I didn’t realize I had around Y2K and how my parents’ lack of survival preparation due to desperately hoping the rapture would happen wound up affecting me. I wasn’t allowed to feel all those fears and the angst and even the anger about not-so-subtly being told that life isn’t really worth living at the age of 9. If the rapture will probably happen tomorrow, then there’s no reason to think about the future.
Turns out, that’s a whole lot of bullshit to not be allowed to process when you’re 9. So, cut to literally 20 years later and uh I’m finding myself fighting the urge to kinda curl up and do nothing and also this endless anxiety driven desire to run myself into the ground fighting. Somewhere, there’s a middle ground but today has been a complete physical and emotional crash from that realization.
I’m grieving a lot for the 9 year old me who was handed all the worst ideas and shut down because the dissonance was too great. I’m angry that she had to carry the weight of feeling guilty about wanting to live. I don’t really have the energy to work through it all right now, it’s just so much.
Instead, here’s what I have been doing for the last 3 weeks:
I also downloaded a coloring app called Pigment and have been coloring on my phone whenever I need something else to do besides look at news and twitter.
Please share these widely, and if they were useful to you – consider setting up a (tax deductible) monthly donation so we can continue to offer support and create resources like this.
Together with my fellow tenants and neighbors I’ve been working on organizing mutual aid infrastructure for my building and block. We have weekly zoom meetings and everything. It’s been super helpful to work with neighbors (some of whom I haven’t met in person yet!) to build something that y’know, we feel like we can count on given that the federal government’s response is lacking and bureaucracy is slow.
I definitely recommend joining your building’s tenants union and your neighborhood group (or starting one!) if you have the spoons but haven’t yet. There are so many ways we can help eachother even without getting our molecules close together.
Here’s what we’ve been doing to organize my block:
Started a public facebook group for our neighborhood
Facebook is the resource sharing/info hub
Posted flyers on the block to raise awareness and get members
Started a slack for folks who wanted to help create infrastructure for a proper support network
Weekly zoom meeting
Currently working on: setting up values/code of conduct, communications (email, google voice number), website, paypal, neighborhood census (google form for facebook), building organizing letter/census templates (google forms & printable doc)
Here’s what we’ve been doing in my building:
Building a tenant’s email list through writing letters and slipping under doors
Using the listserv to share news, resources, check if anyone needs groceries
Regular zoom meetings to discuss rights and recourse as tenants and how to help each-other with the bonus of cat interruptions
And, like everyone else on the planet with a Switch, I’ve been vanishing to my not-at-all-deserted island called Interriver and building ALL THE THINGS.
And the most exciting bit of news: I finally. started. Androderm (patches).
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 becoming one of Those People Who has multiple bikes for different reasons One for travel and one for getting around town I’m one of those people who feels a little twinge of guilt at the luxury of being able to save enough to buy two bikes when I only need one.
I’m becoming one of Those People With a detailed list of current and future backpacking gear That can be sorted by weight and type One of those people who finds living in the elements a relaxing escape from the default world chaos.
I’m one of Those People Who instinctively says yes to adventuring And dives head first into the unknown One of those people who is familiar with uncertainty and comfortable learning the details as they go.
I’m one of Those People Who is caught halfway between crippling perfectionism And an empty garden of fucks One of those people who dabbles in every kind of art and masters a few.
I’m one of Those People Who chose their own family And created their own name One of those people who has recreated themselves in their own image more times than they can count.
I’m one of Those People Who sometimes can’t get out of bed Because depression and anxiety are too loud One of those people who tries to prioritize selfcare but still falls short frequently.
I’m one of Those People Whose undiagnosed chronic illness Undermines their ability One of those people who tries to make plans and then has to cancel because their body decided to quit.
I’m one of Those People Who sometimes tries to ignore their disability As if that makes it vanish (it doesn’t) One of those people who has relied so much on themselves that accepting help is scary.
I’m one of Those adventurist, artistic, outdoorsy (but not athletic, let’s not kid ourselves), queer, sick, disabled People who worries about the future of the planet.
I’m one of “Those People” probably not unlike you.
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.