My story of getting ill told in podcast form

[frozenborderline]

Listen to Origin Story Pt. 1 by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/heCz

 

[frozenborderline]

Part II
Listen to Origin Story Pt. 2 by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/Cp7X

 

[frozenborderline]

Part III
Listen to Origin Story Pt. 3 by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/s7xN

 

[frozenborderline]

Part III
Listen to Origin Story Pt. 3 by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/s7xN

This is my favorite episode of the podcast so far because I tell both my story of being sick, go on tangents, and then tell the story of the tahoe outbreak and Erik Johnson's story , bc the information and revelation of that weaved together with the revelation of the causes of my illness.

It may be a little long winded, but definitely after fifty minutes it gets really serious about that part (the tahoe outbreak )

 

[frozenborderline]

@ScottTriGuy

 

[Emmarose47]

Thank you I've listened to part 1 so far ..
May you ask what your journey had been with your mental health through all.of it ....

 

[PisForPerseverance]

I just clicked through parts of some episodes, I'm looking forward to listening more. Did you study Critical Theory? I've found placing my experiences in their cultural and structural context to be key for healing psychologically from the harms in my life and since I've been sick. And in reclaiming my value. This is an ongoing practice. I'm writing about this for a medical anthropology class right now. I heard you use the word teleological and got excited. Looking forward to listening to critical insights from the perspective of someone with this illness. Feel free to message me if you want to exchange perspective!

Listen to Origin Story Pt. 1 by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/heCz

 

[Emmarose47]

I just clicked through parts of some episodes, I'm looking forward to listening more. Did you study Critical Theory? I've found placing my experiences in their cultural and structural context to be key for healing psychologically from the harms in my life and since I've been sick. And in reclaiming my value. This is an ongoing practice. I'm writing about this for a medical anthropology class right now. I heard you use the word teleological and got excited. Looking forward to listening to critical insights from the perspective of someone with this illness. Feel free to message me if you want to exchange perspective!

Very interesting ..
So is this the part society and family have played in development of CFS ?

 

[PisForPerseverance]

No, while I like to understanding any of the societal and structural factors in the development or worsening of mecfs (for example, the culture and institutional attitudes and practices of the US medical system (I can only speak to the US) leading to neglecting and harming people when they first get sick, where maybe full me/cfs could have been prevented in some cases with proper immediate care. Another example would be the three triggering events that started my disease, how those are all connected to messed up preventable things particular to this culture and time). Although I find it important to identify things like that, that is not what I meant there. I meant any of the harms in my life in general pre me/cfs and post, to do that same process of identifying the broader situational contexts of those harms and identify what are the cultural factors at play here, the familial ones if family is involved, the institutional ones. There are many psychological and practical benefits to being able to do this, especially when there is another person to affirm and support that process and reclaiming your value. My therapist is great for this. I've I think read you speaking about coping and how to cope so I expounded upon this in case you find it at all helpful!

Very interesting ..
So is this the part society and family have played in development of CFS ?

 

[frozenborderline]

I just clicked through parts of some episodes, I'm looking forward to listening more. Did you study Critical Theory? I've found placing my experiences in their cultural and structural context to be key for healing psychologically from the harms in my life and since I've been sick. And in reclaiming my value. This is an ongoing practice. I'm writing about this for a medical anthropology class right now. I heard you use the word teleological and got excited. Looking forward to listening to critical insights from the perspective of someone with this illness. Feel free to message me if you want to exchange perspective!

I never formally studied critical theory but unfortunately read a decent amount. I say unfortunately not because it's so horrible or politically bad , but bc as I get severely ill the things that I think are the most important to know to get better , like science and ecology and biology , and the things I wish I spent time doing while healthy , since now I can't do anything , weigh heavily on my mind.

Anyway, I feel like a lot of the political stuff with me/cfs is simple enough to not need critical theory to understand it, but I suppose sontags stuff on illness is helpful for understanding it, so I will walk back the idea that critical theory is entirely useless. I did read a decent amount of nietzsche and klossowskis book on nietzsche but I don't find nietzsche dry like a lot of critical theory and there's something more personal and poetic about his work, and it covers every field from philosophy of science , to ideas about the will/consciousness, to aesthetics and governance. And all by someone who was very sick himself with a mysterious terrible illness that remitted a bit in good mountain air... Just like mine, to an extent

I guess it's not so much a dislike of critical theory as the driest most maximalist and least inspiring /useful critical theory. I used to have a dislike for stem but since getting sick have realized how valuable science , especially biology and ecology are, as fields. As far as the useful aspects of some critical theory I guess it could inform social ideas about how marginalized groups effect change , but I don't think that's rocket science... I mean I think the main obstacles are people's level of debility and their opposition to embarrassment or what they see as overly politicized spectacle. But really people could just learn from ACT UP and copy everything they did identically except small appropriate changes for a new media ecology , and have success. Without very complex social ideas.

 

[frozenborderline]

What I dislike the most about critical theory is how much influence freud and lacan have, although ofc deleuze has been critical of them , but freud basically invented the modern concept of conversion disorder and hysteria. Even a lot of good marxists I used to like who have interesting ideas about how capitalism causes various mental illnesses and social pathologies, when I think about a) how much they borrow from lacanian psychoanalysis and b)how much they'd rather root causes of pathologies in the social structures rather than in things like literal environmental toxins and pathogens,, it makes me take them far less seriously.
A prime example is how mark fisher, who used to be a favorite , discussed children of men, an incredible dystopian film in which everybody is sterile for an unknown reason. He talked about it as a metaphor for cultural sterility. Eg in late capitalism /capitalist realism, we are not making new cultural ideas, especially because of precarity and bureaucracy affecting the art world etc. But the non metaphorical sterility in Children of Men, set in 2040, is incredibly plausible based on current rates of sperm counts dropping and endocrinological disorders increasing. So the focus should be on understanding environmental toxins increasing these things, rather than to solely read things on the symbolic register and analyze them to death. I mean I think, as someone affected by an environmental illness, that is such a major example of a critical theorist missing the forest for the trees. Or just missing the point, incredibly badly. But I do think some philosophy , and theology , that qualifies as critical theory, is useful , but it's pretty small amount. We do need to understand philosophy of science instead of just assuming the scientific process works automatically and confusing process with product. And we do need to understand the psychological opposition to dealing with environmental problems as a civilization. I read some mircea eliade and my sister is reading me some guenon and these seem more valuable than a lot of critical theory, and I honestly think that in order to see ourselves as connected to nature in a way that is scientifically accurate , and helpful for preserving our lives and health , we may need to reinvent ourselves as animists. Who don't believe in whig history or most types of teleology.
But some philosophy is needed, still,for example philosophy of science to understand how stuff like the pace trial get propagated and how resilient the concept of hysteria is despite being empirically nonsense. Also to understand how scientists, also all humans , think of themselves as separate from nature and thus not only damage their environment but are more reticent to study environmental toxins effect on human disease than is rational, despite thinking of that as one of the main factors in animal disease. I don't think enough critical theory adequately addresses the above thiugh, I actually like simpler philosophical stuff like daniel quinn's ishmael which is sort of simple deep ecology, or edward abbey

 

[frozenborderline]

I've found placing my experiences in their cultural and structural context to be key for healing psychologically from the harms in my life and since I've been sick. And in reclaiming my value

I strongly feel that while some suffering has value, the endless and non fertile delirium/ suffering /living death of me/cfs doesn't have value. This type of suffering is due to structural injustices, sure, and environmental toxins, but knowing that doesn't give it value. The only thing that would give this suffering value is to give it what every mythos and comedy or tragedy or narrative needs, an end. So, a remission , or death. But this endless monotonous formless waste doesn't have any value to me. I also sort of hate the social model of disability. I guess accessibility and thinking of disabled people not as burdens is good but , the social model meme seems to have gone so far that a lot of people with less severe illnesses than me/cfs have pushed it and when I discourse with people who believe in it , they genuinely have a hard time with the idea that illness research funding matters more to me than ableist language , or that we need to have hard conversations about what illnesses are most devastating and why , say, ours deserves more funding than some other ones like the currently incredibly treatable HIV/AIDS

Sorry though, it seems like I went on a tangential rant that may sound a bit aggressive when you were being nice about my podcast. I don't mean to some of this stuff just gets under my skin

 

[frozenborderline]

Thank you I've listened to part 1 so far ..
May you ask what your journey had been with your mental health through all.of it ....

All bad. Although having some hope bc of mold avoidance helping and having some potentially very treatable diagnoses like cci is helpful, there's a lot that has made me weary and , missing most of my youth sucks. So yeah it sucks , I hate my life and I've lost almost everything that gave me a bit of relief from my grief and stuff like ability to listen to or make music . I'm totally miserable. And my hope dwindles even though on paper I have a pretty good theory and idea for treatment for remission bc I have no money

 

[frozenborderline]

I'm releasing a new episode soon that's an interview with someone who may or may not qualify as cfs patient but was getting sicker and sucker w various symptoms until I told him to try mold avoidance before he became as sick as me . The interesting part is that he's my friend and I knew him before this, and that mold avoidance worked a lot, for his psych symptoms as well.

 

[frozenborderline]

I agree with a lot of that. Except that I don't think PTSD or trauma from medical stuff is hard to heal from if there's no "post" and the current experience of being very ill without enough palliative care is traumatic. And I don't think even deep somatic work can heal cfs

 

[Rufous McKinney]

say, ours deserves more funding than some other ones like the currently incredibly treatable HIV/AIDS

Its incredibly strange to experience near profound jealousy over a statement that our current adminstration would like to throw a large chunk of millions in research at ending AIDs.

What kind of position have we been put in, that these types of feelings of injustice emerge, and you want to yell at people who wear pink ribbons and go to marathons.

 

[Rufous McKinney]

I don't mean to some of this stuff just gets under my skin

We (the royal we) simply live in this disposable world of Plastic Trees and few seem to see any connection between their endless comsumptions and needs for physical stuff- and the health of everybody.

If you (the royal you) (Not you, specifically!) want a non toxic world- start with ending the endless acquisitions of the latest devices, for instance.

So your one cell phone- well its responsible for an ugly mine somewhere on the planet and a hideous road with permanent erosion, leading there. And probably some locals suffering. And so much for any wildlife living near whereever that is.

And we are never finished, never done. There is always the next scheme.

The notion of sacrificing current desires for a longer term greater good- seems to be the true challenge our societies face.

We stroll along the beaches, and see a sparking shell, we pick it up. Declaring it valuable. we drill a small hole, wear it around our necks, with string made from some wild grasses.

Centuries later- what have we done?

And now, polyester pale blue masks- blow down the street. PPE, a new strata.

 

[PisForPerseverance]

Was that to something I posted and deleted? I was writing a comment and then accidentally sent it when I wasn't finished and it wasn't organized. Or was that to what I said to emmarose?

I agree with a lot of that. Except that I don't think PTSD or trauma from medical stuff is hard to heal from if there's no "post" and the current experience of being very ill without enough palliative care is traumatic. And I don't think even deep somatic work can heal cfs

 

[Emmarose47]

I really liked hearing about it being more than fatigue it is an intolerance to exertion ...I wish people understood this more .
Also an abnormal immune response

I wish the name.cfs would change to reflect these 2 components

 

[Rufous McKinney]

I really liked hearing about it being more than fatigue it is an intolerance to exertion

our vocabulary is often limited. We utter simple phrases- Tired. So Tired. whatever, they vary, I'm in Zombie land alot.

So to witness all the weird neurologies and odd symptom worsening i experienced, when I got MUCH worse in a short amount of time (about 2 months)...was really perplexing and frankly eye opening.

I didn't really think I actually WAS this big of a physiological mess.

So I am alot better lately from another chapter of mostly massive resting and alot of not doing these last few months.

But if I start doing? do be do be do.