2018 Year in Review (Chronically Ill version). I was sick every single day, 365 days in a row, no shit. I had a couple of relatively good days but I have no idea what I did to deserve them and was unable to replicate them. I had a lot of bad days. Overall, I am feeling worse over time. For some reason I’m still here which terrorizes and terrifies me every minute of every day. I surpassed my mental and physical limits a long time ago but no one cares what my limits are. It’s a miracle that I’ve avoided either the hospital or jail due to intractable physical and mental pain. The End. LMAO @ “The End.” Who am I kidding, this is going to go on forever. I’m starting to think I died and came back because there is no way any human being could live through this for this long and I’m pretty sure I actually died like twice, if not 4 or 5 times that I can think of. Am I am zombie? Or a ghost? A ghost would make perfect sense since I seem to be invisible now. What the fuck. I have no idea what’s happening to me. The End. LOL. FML.
But seriously, I have found myself wishing people “Happy New Year!” as if there is anything likely to be “new” about it when my life as a chronically ill person has been completely the same day in and day out for going on 6 years now (I was diagnosed in 2013). Meet the new boss! Same as the old boss. And chronic, progressive illness is the boss baes. I no longer have much if any say over what happens to me. For some reason in my well-wishes I have also included something like “I hope 2019 sucks less ass than previous years” but truthfully is late-stage capitalism and patriarchy — or chronic illness — likely to improve with time? Is it? I’m just asking. And apologizing to anyone I may’ve said that to because in hindsight I realize it’s ridiculous.
I have enjoyed (not the right word) writing this blog and interacting with those who choose to do that. I hope it has been helpful and a cohesive, coherent and relevant project. I think it has been. The first posts I wrote for this project were literally the first opportunity and ability I had in the nearly 4 years I have been here to gather and articulate my thoughts about what has happened to me since I’ve been ill and treating with both Western medicine and now medical cannabis, including what it all means politically in a big-picture way. I think I did that accurately, and radically, and well. Importantly, this project also helped me to recover my sanity and even my identity which were suffering under the heat and weight of my lived experience — living with a chronic, progressive disease, as an unkept female, under late-stage capitalism and patriarchy is hell, utter hell. I know there are people here who understand what that means. I didn’t understand it until it happened to me.
I don’t know why it’s necessary for people to experience this — chronic, progressive illness — themselves before they are able to extend compassion and empathy to sick people but that does seem to be the case. As an attorney practicing benefits and anti-poverty law, I represented hundreds if not thousands of clients who were ill and injured and I did have compassion and empathy for them because for my entire adult life I’ve never been more than 2 paychecks (or a failed semester) away from being homeless myself and I always knew how dependent I was on myself and my ability to work. A lot of my experience and outlook was surely colored by growing up with a terminally ill sibling who was unable to support himself and what that meant for him to be a terminally dependent “child” even as a young adult. He was sent home to die as a newborn and lived until he was 21. Still, I regret my interactions with my sick clients because the thing about professionals, even relatively compassionate ones, is that they are well enough to work. I was well enough to work and I thought I knew what it meant to be sick because I’d been sick before. I was wrong about that. I didn’t have a clue.
Concurrently to starting this blog, I was encouraged to and did start a Patreon page and I have collected some truly generous long and short-term donations from readers, financial assistance which has been so helpful in my current situation as a seriously ill person who is mostly unable to work. Because I abandoned Western medicine after 2 years of treatment that was only making me worse, I do not have the proper medical documentation to support a disability claim and I am ineligible for disability-based benefits largely because of that. It’s also very difficult to get a disability determination for an invisible and confounding illness like Crohn’s. Because I attempted to “help myself” as a disabled person by starting my own business that was compatible with my disability, I have maintained a small income and my finances/bookkeeping are more complicated and expensive than what I can deal with, making me ineligible for need-based benefits as well. And there are issues with applying for federal benefits as a medical marijuana patient, which drug use also makes me largely unemployable even if I could physically and mentally work (despite literally hundreds of thousands of chronic pain sufferers who either collect disability payments or work through the effects of opiates and other narcotic pain relievers and other incapacitating drugs, medical marijuana is still federally illegal and generally taboo). So there’s that.
Thanks largely to donations from current and past readers and commenters, I have been able to move myself and my 2 adopted shelter cats, Mama and Chili, into a more affordable apartment as well as keeping myself relatively comfortable with organic food and medical cannabis. Some of my Patrons have been giving consistently since the beginning of this project and surely will be prone to compassion/giving fatigue as this project, and my terminal neediness, extends from months into years (the first donations were accepted April 1, 2018). That is the problem with chronic, progressive illness — it does not “get better” and only gets worse over time. The normal “hand-up not hand-out” rules of middle-class generosity do not seem to apply where there is no possibility of upward-mobility for the recipient, and where the inevitable downward spiral of increasing disability and decreasing independence (and increasing, not decreasing need) becomes obvious over time. But generally people seem inclined to apply those middle-class rules anyway and think that chronically as opposed to acutely ill or injured people are just too gross and too needy to bother to help at all (and too gross and too needy for too long, which is read as a character flaw and not the very definition of chronic, progressive disease).
It is my sincerest hope that, while no one will give more than they can reasonably afford, my readers will continue to be generous with me and with this project which has turned out to be an alternative source of income that I had not anticipated but sorely need. I have always been open to suggestions and offers for longer-term solutions as well, although as my readership is largely unresourced females, the ones that patriarchy has fucked over the most, or at least the most obviously, that will be a tough row to hoe. For women especially, under capitalism and patriarchy, our individual and collective accumulations, where we are allowed any at all, are prone to disappearing like a fart in the wind. I became a lawyer in the first place because I knew I was on my own as a single female without a supportive family or community behind me and that I had no chance for a safe, sane or comfortable life unless I provided that for myself. That plan did not work and was largely a bust even before I became seriously ill, although looking back, having a lifetime of subclinical Crohn’s symptoms probably affected me much more than I ever knew. As Crohn’s is largely genetic, and I was having GI and other Crohn’s related symptoms since I was an infant, I was probably fucked from the start.
Since researching Crohn’s disease, I have also learned that autism is often comorbid with Crohn’s disease for reasons which are poorly understood. As a likely Autism Spectrum Disordered (ASD) female I had even less chance. I was more naive and more ill than I ever knew and I grieve for that honestly. I had no idea how much the deck was stacked against me and I blamed myself for every non-starter, every failure to thrive, every ending that was not on my terms, every time I had to leave because it was impossible for me to stay. I had no one to teach me any of this, about how the world really worked for all females but especially sick and otherwise unresourced ones, but I sure as hell learned. The 9 feet of fluffy, pink frosting most people seem to have between themselves and reality — frosting comprised, probably, of familial and community resources, money, drugs and alcohol, various fictions and a thriving film of microbiota and feel-good hormones produced in their healthy guts — gave me no quarter and my unfrosted, throbby brain soaked up information like a sponge.
Including but not limited to recent financial donations, my radical writing and my radical readers have saved me in more ways than one. I was thwarted at my every attempt at a legal writing career but I had wanted to be a writer so badly. I was a writer actually (most lawyers are) and I had an article published in a legal journal (most lawyers don’t) but as a rule I didn’t get to take credit for my own work and coming to radical conclusions was right out. In the end though, my education and brief career as an attorney gave me the training in logic and reason I ended up turning on patriarchy and I dissected and analyzed it to the ground. My experience working for do-gooder groups, including Plaintiffs’ law firms and legal non-profits gave me the perspective that changing things from the inside, including legal and social reformism is impossible (and that nonprofits only exist to give middle-class assholes a steady income while making the directors rich — don’t even get me started on that).
And as a likely genetic social misfit, as an ASD female, I came out with it and said things that were absolutely self-evident but which I didn’t hear anyone saying anywhere, even in spaces that were supposedly radical and feminist. And I now know why I didn’t see this kind of material anywhere: radical spaces aren’t, and female misfits are to be neither seen nor heard. They are “out there,” pushed way out there, where they can’t do any harm (or good). I now know that many if not most radical female misfits are probably dead, either because patriarchy killed them or because they simply couldn’t take it anymore and didn’t (same thing really — any way radical women die it is always patriarchy that kills us). And that includes the experience of being chronically, progressively ill under late-stage capitalism and patriarchy where we can no longer “work” but still have to earn our keep, in our case, by submitting to dangerous and misogynistic Western medicine that is known to negligently and even deliberately kill us.
I truly believe that my radical writing has been my life’s work and I am proud of this ongoing project and others that have ended, just as I am proud of my readers for daring to expose themselves to something so unusual and for coming out of the shadows to contribute to and talk about it when and where they can. I would like to thank all my readers, including those who choose to comment and donate, for contributing to this project and to my overall mental and physical wellbeing. Please feel free to reach out and provide feedback on this project in the comments of this post, or to contact me through my Patreon page here. I had to remove the WordPress contact box from this blog because of spam, so that was ruined, but comments are always left open (for now). Thanks for reading and contributing to this project, and Happy New Year such as it is.