Overwashing Causes Cracked Hands. Breathing Into a Mask Invites a Bacterial Colony to Grow on Your Face. Ft. Jodie Foster.

I was always struck by the last part of this scene in the movie Contact, where Jodie Foster’s character is traveling through a wormhole in alien technology interpreted and built by human males.  Instead of just following the instructions an unknown alien civilization sent them and building her traveling pod to specifications, the human males decided they knew better.  So they started adding a bunch of stuff including a captain’s chair bolted to the ceiling of the pod.  The human male-built pod provides a rough ride that appears to be the fault of the aliens and her trip would have ended badly if she hadn’t abandoned the death-chair at the last moment, right before the bolts sheared off and the chair crumpled to the ceiling while she and her compass necklace free-floated effortlessly inside the pod.  As usual, with their megalomaniacal tendencies and arrogant meddling, human males only succeeded in making everything worse.  This message was not lost on me and I have thought about this scene in a 30 year old movie many times.  I am thinking about it right now!  And now, so are you.

Being chronically ill and having no car, I have only been out of my apartment 4 times since my state and town went on lockdown about 2 months ago.  But I don’t really feel restricted and this is hardly a radical change from my “new normal” as a seriously, permanently and progressively ill person.  As I have written about before, I am currently in a tiny rural town in a cannabis-legal state, having moved here 5 years ago in an attempt to treat the aggressive pain and symptoms of my treatment-resistant Crohn’s disease.  Coming from (most recently) Long Island, New York, I have thought many times that the relative quiet and relatively slow pace of this rural community is at least as therapeutic as the cannabis.  While I have managed to achieve the impossible, and something Western medicine was never able to provide — about a 50% decrease in symptoms and a 50% increase in my quality of life — medical marijuana (and relative peace) is not a panacea to a progressive, incurable and untreatable disease and in some ways, due only to the passage of time, I have, predictably, gotten worse.

Continue reading “Overwashing Causes Cracked Hands. Breathing Into a Mask Invites a Bacterial Colony to Grow on Your Face. Ft. Jodie Foster.”

A “Rational Suicide” Note. Ft. Anne Örtegren.

This is a “suicide” note left by a ME/CFS sufferer who sought and found relief from her suffering via legal, medically assisted suicide.  She says this manifesto took her months to write, which I do not doubt a bit: it is long, detailed and polished and was written when she was feeling terrible.  She wrote it with the intent to describe her almost indescribable pain and experience, and to convince others to take action on behalf of ME/CFS sufferers, both of which are lofty communication goals when anyone is seriously ill.

Describing and convincing have been my most impossible endeavors since I’ve been seriously ill myself and I think I have mostly failed, judging by others’ reactions to everything I’ve managed to gather the physical and emotional grit to attempt to communicate: that I am seriously, hopelessly ill with an incurable, progressive disease, that there is no bottom to how bad this can get, and it matters not what anyone thinks about it.  Some things are just true regardless of whether anyone believes it.

In this note, ME/CFS patient Anne Örtegren describes symptoms and dilemmas I have experienced myself and she foresees logical outcomes to her predicament, something sick people and especially sick women are never allowed to do because catastrophization.  For example, she knows that her heightened sensitivity to light and sound will make treatment or recovery in a hospital setting impossible where the standard of care in that environment requires constant activity and interruptions, and provides no privacy and no escape from the harsh industrial lighting, interrogations by (allegedly) well meaning staff and the general hustle and bustle of capitalistic money making on the backs and bodies of sick and dying people.

That is but one example of a sick person making informed prognostications regarding likely outcomes of the things other people want to do to us, and as someone who shares these sensitivities to light and sound (and therefore an aversion to hospital settings) as but one example of our shared experience of being seriously ill, I appreciated her spelling it out.  I also feel extremely sad that she had to, and furious that no one who allegedly cared about her wellbeing including medical professionals who should be fucking sensitive to the actual needs of real patients could make the leap themselves.  There are many such examples in this letter.

See for yourselves, and understand that as illuminating and raw as this letter is, it’s also been edited by the publisher and a so-called suicide prevention expert because the bottom line everywhere appears to be that there is no such thing as rational suicide or euthanasia because well people and people who make money off of the long-term sick and dying say so.  And because living in this capitalistic, patriarchal nightmare is so hideous for so many people that “suicide contagion” exists, where just knowing that someone, somewhere had whatever it took to end themselves is likely to cause untold numbers of happy, healthy consumers with bright futures to do the same damn thing.  Yeah that’s it, let’s keep telling ourselves that.

The letter as published is reprinted below.  The unedited letter supposedly exists online somewhere if anyone cares to look and has the energy to figure out how and where the edited version differs from the original.  Comments are open below.

Continue reading “A “Rational Suicide” Note. Ft. Anne Örtegren.”

The “I Told You I Was Sick” Tombstone Gag. That Shit Just Never Gets Old. A Halloween Hypochondria Post.

tombstone

Will someone please explain to me how a person’s literal death is evidence that they weren’t actually sick at the time they died or ever?  The “I Told You I Was Sick” tombstone may (or may not idk) have been around as long as tombstones themselves have been around and it is even cataloged in a collection of “curious epitaphs” as the epitaph of an ancient hypochondriac.

The epitaph.  Of a hypochondriac.  Hmm.  While I process that very concept a moment, I Google “hypochondria” and find that the word doesn’t mean exactly what I thought it meant.  Or rather, the origin of the word itself was nothing like I had assumed.  Apparently, the very concept of unverified/unverifiable illness causing patients extreme physical and mental distress originated from complaints involving the abdomen.  Why doesn’t that surprise me at all.  From Wiki:

Among the regions of the abdomen, the hypochondrium is the uppermost part.  The word derives from the Greek term ὑποχόνδριος hypokhondrios, meaning “of the soft parts between the ribs and navel” from ὑπό hypo (“under”) and χόνδρος khondros, or cartilage (of the sternum).

Hypochondria in Late Latin meant “the abdomen”. 

The term hypochondriasis for a state of disease without real cause reflected the ancient belief that the viscera of the hypochondria were the seat of melancholy and sources of the vapor that caused morbid feelings.  Until the early 18th century, the term referred to a “physical disease caused by imbalances in the region that was below your rib cage”.  Robert Burton’s The Anatomy of Melancholy (1621) blamed it “for everything from ‘too much spittle’ to ‘rumbling in the guts’.

Bolds mine.  Apparently, people have been presenting to doctors for a long, long time complaining of upper abdominal pain, too much spittle chronic nausea and/or drooling, and rumbling in the guts the dreaded intestinal gurgling that often foretells an impending Crohn’s flare and they had morbid feelings about that.  You don’t say.

I should mention here that capsule endoscopy, which is currently the only way to get diagnostic imaging of the lining of the small bowel, is a very new technology that’s extremely expensive and often not covered by insurance.  Before modern imaging technology, including capsule endoscopy technology, diseases of the upper part of the abdomen in particular were virtually undiagnosable.  Due to its inaccessible location, in practice, even today, for many if not most people getting a reliable diagnostic image of the hypochondrium (!) or the upper part of the abdomen and gastrointestinal tract is impossible.

Continue reading “The “I Told You I Was Sick” Tombstone Gag. That Shit Just Never Gets Old. A Halloween Hypochondria Post.”

Cannabis Refugee, Esq. One Year Later. (Meta Discussion)

As my readers may’ve seen or sensed from the recent comments and content on this blog, I have become disillusioned with the CRE writing project and may decide not to continue writing about my experience as a Crohn’s patient trying to survive outside the Western medical system that was not helping me and was only making me worse.  As far as I can tell, this project has not inspired any additional writing or critical thinking on this subject, my posts have not been widely shared or inspired much interesting feedback, and this work has not opened up any additional opportunities for me in the way of writing or activism.  Of course, those were not the reasons I started this blog in the first place but they are to be considered when looking into the future of this project and whether it is in my or anyone’s best interest that it continue.

My original intent in starting this project nearly one year ago was to document my experiences as a seriously ill woman for whom conventional medical treatments were not working including the social, financial and health-related fallout of this system that seems designed to control and punish sick people while we carry the blame and shame for Western medicine’s failures and even its lies.  At times my health and financial situation have been so precarious that I actually believed (and still do believe) that I am going to die here, alone and in the middle nowhere, and I wanted the truth about what happened to me to be known or at least knowable by those who would wonder what the hell could’ve possibly happened that led to that sad and lonely end.

Continue reading “Cannabis Refugee, Esq. One Year Later. (Meta Discussion)”

Netflix Docu-series “Afflicted”. I Watched It So You Don’t Have To.

Thanks to one of my readers for the recommend!

The above is a vid made by one of the patient/participants in Netflix’s new docu-series “Afflicted,” a 7-part series which follows 7 chronically ill people around documenting their experiences with illness and treatment and which was pitched to the participants as a project that would give a credible voice to seriously chronically ill patients but which ended up doing the opposite.  This patient/participant basically disavows his involvement with the project and slams the director and others making creative decisions for lying to the patients about the nature of the show and the motive for making it, where the participants’ mental health (and by extension their physical ailments) were not taken for granted but rather were put up for debate.  There are also a couple of criticisms of the series online from the so-called “chronic illness community” framing the series as tasteless entertainment — an offensive medical mystery whodunnit crafted for the able-bodied to judge whether the symptoms and diseases these patients describe are “real” or all “in their heads”.  That’s a fair criticism of course and I will leave it for that community to rip it to shreds on the grounds of, essentially, ableism.  But let’s go further.

My main problem with this 7-hour series largely lies in the last half hour or so, where we see that nearly all the patients have shown vast improvements in their symptoms and qualities of life through engaging with various alternative treatments for their ailments.  For those who are wondering about the point and motivation behind this docuseries, I would suggest that it functions as effective pro-Alternative Treatment propaganda and that therefore, pro-Alternative Treatment propaganda is probably “the point” and the motive behind it.  If anyone cares to research this project to see who funded it, that would probably be a worthwhile endeavor as the only ones that come out looking good by the end are the alternative practitioners who have miraculously given most of these allegedly “crazy” patients their lives back, often despite themselves, although we never find out exactly how or why the treatments so consistently worked except via copious references to the “mind-body connection” and even the placebo effect.

Continue reading “Netflix Docu-series “Afflicted”. I Watched It So You Don’t Have To.”