After researching this disease for going on 6 years now, I believe I have come to a rational conclusion about Crohn’s disease which is that it is not a so-called incurable progressive disease but a fatal one: based on all the evidence including anecdotal evidence from patients themselves I now believe that Crohn’s disease is a terminal illness. I have more or less concluded that before but for some reason I hadn’t yet come to terms with it. It’s not easy to come to terms with something like that but not because I suffer from what is almost certainly going to cause my untimely death but because everyone, and I mean absolutely everyone is lying their asses off about Crohn’s disease including how “treatable” it is, what kind of quality of life Crohn’s patients can reasonably expect, how predictably disabling it is and why, and how it’s probably going to end.
But before we get to the end it’s important to start at the beginning and admit what Crohn’s disease is at base: Crohn’s patients, including myself, have to medicate in order to eat. And that is serious, very serious indeed. If there is anything that is any less compatible with life than a disease that prevents the sick person from eating I can’t think of it. A disease that prevented the sick person from breathing wouldn’t be any less compatible with life than Crohn’s is, it would just be quicker.
Continue reading “Crohn’s Disease is a Terminal Illness. Coming to Terms.”
In my last post I wrote about an article published in a British medical journal that admitted that medically futile care — care that is not expected to increase a sick or dying patient’s health or prolong their life — has ritualistic intent and effect on the population at large. I did not pay to access the full article and the abstract did not detail the ritualistic intent/effect so I was left to surmise for myself what the intent and effects are on society as a whole when Western medicine in particular flogs corpses with no reasonable chance of being revived; prolongs the dying process with aggressive and violent transplants and surgeries, resuscitation attempts and so-called “life support” including intravenous nutrition and hydration, mechanical breathing and filtration and the like; artificially delivers and maintains genetically or congenitally nonviable infants instead of letting them die naturally and so on.
I have observed previously that Western medicine attempting to treat untreatable, incurable and progressive disease is also ritualistic and does not benefit the patient except to function as a means of compliance and confession where sick people, especially sick women, are expected to confess their sins of and accept a flogging for being failed producers/consumers under capitalism and patriarchy. Thus I would include such ineffective care under the heading of ritualistic medically futile care although the article I was responding to did not address or include that type of futility. As a radical feminist I reject patriarchal rituals on their face and refuse to participate in them at all where and when I have a choice. I have resisted using the capitalistic patriarchal (Western) medical doctor’s office as confessional, and refused to accept the flogging of brutal treatments that will not increase my overall quality of life or even reliably delay my death, instead choosing to treat my otherwise intractable pain and symptoms with medical cannabis.
So the existence of medically futile care as (capitalistic, patriarchal) ritual does not seem to be at issue, being freely admitted to by researchers who frame these rituals as having a positive effect on society — an effect which transcends the abuse and pain suffered by individual patients who are subjected to it but do not themselves directly benefit from it in terms of an increased quality or even quantity/length of life. So what exactly is the specific ritualistic intent and effect on society at large of flogging corpses, creating and maintaining zombified “undead” and/or profoundly impaired patients on so-called life support, artificially reducing natural levels of infant mortality and so on?
Continue reading “Medically Futile Care as Ritual. Part II. The Political Intent and Effect of Flogging Corpses, Framing Zombification as “Life Support” Etc. What’s Going On?”
I’ve been researching so-called “medically futile care” lately, or more accurately, it’s a rabbit hole I fell down while researching nursing and what nurses have to say about witnessing and participating in medically futile care, otherwise known as medicalized torture. My own mother is a nurse and I know that she, after being a nurse for some 30 years, started to become disillusioned by Western medicine and the horrific procedures and treatments imposed on intractably and/or terminally ill and actively dying patients. Of course, she didn’t start having a problem with it until after she had reaped the social and material rewards of being a disgusting handmaiden and middle class patriarchal enforcer for her entire adult life including subjecting her own children to medicalized torture: my own brother died from it and earlier this year she brutally criticised me for abandoning Western medicine after 2 years of conventional Crohn’s treatments that were not helping and only making me worse. With a Western medical nurse as a mother who needs a firing squad (or torturer) amirite?
I have written here before about disillusioned Western medical doctors resisting their evil profession by leaving the field, including leaving via suicide. Apparently there is currently a movement headed by Western medical doctors themselves to challenge abusive practices in their field including but not limited to hazing and domination rituals in medical school and medical residency; overwork, sleep deprivation and other conditions related to employment in the Western medical field; and cruel standards of care including those implicating medically futile care where doctors feel “forced” to literally torture sick, injured and otherwise vulnerable patients lest they lose their jobs or be sued for medical malpractice. Doctors are actually feeling sorry for themselves because their jobs as patriarchal enforcers and medical torturers makes them feel bad, and while anyone who has ever worked before knows what it’s like to be coerced for money (and survival) those who literally, physically harm and torture other people in order to maintain their own standards of living will garner no sympathy from me.
The same goes for Western medical nurses who my research indicates suffer greatly from vicarious trauma and professional burnout from “having” to witness torturous medically futile care in their professions. Examples of such care include flogging corpses which have no reasonable chance of being revived; continuing invasive so-called “life support” for those who are dead to the world and will probably never regain consciousness or if they do will be horrifically and permanently impaired; refusing to let extremely premature or terminally malformed or diseased infants die naturally, and so on. Get a real fucking job, no matter how low it pays, is my response to all medical professionals who have a problem with physically harming and torturing people…yet continue to do it anyway because some man somewhere tells them they have to
lest they lose their jobs if they want to continue to fund their own middle- to upper middle-class lifestyles. Seriously fuck you a million times you poor, poor self-proclaimed victims of workplace abuse who continue to physically torture vulnerable people for money. You absolute monsters.
Continue reading ““Medically Futile Care” As Ritual. I Fucking Knew It. And People Are Okay With This?”
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.
Continue reading “Happy New Year! 2018 Year In Review (Chronically Ill Version). Ft. Cannabis Refugee, Esq. Meta Discussion.”