frozenborderline
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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"helpless" an essay on severe ME/CFS, becoming an unwilling canary/seer/etc
- Thread starter frozenborderline
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frozenborderline
Senior Member
- Messages
- 4,405
"Years ago my heart was set/to live, oh/but I've been trying hard/against unbelievable odds"--Big Star, Ballad of El Goodo
I shouldn’t be writing this essay. I shouldn’t be doing anything but resting. But things as they are are untenable. And sometimes I write because I literally think if I get my story out into the world, I might find a savior. These days, everything I write (and it doesn’t amount to much) is a literal cry for help. Why have you forsaken me? And by you, I guess I mean the world. I guess I mean anyone who might listen.
In the summer of 2016, I was working outside for a small tree nursery business, really just a two-man operation, in central vermont. (I’m native to Northeastern Vermont, but our work took us all over the state). I was young, fit, full of anxieties, ambition, big plans. I wanted to be an artist and a musician, professionally, yes, but also just as a vocation. I wanted to do whatever it takes to “make it”. I just wanted a chance. I had a lot of problems, but they were normal problems, and they were all things that genuinely could be worked through. They weren’t interminable or hellish. Just insecurities, anxieties and angst. In some moments I felt on top of the world. I had quit drinking, which had been a moderate problem for me. I was full of restless, productive energy. I was eager to keep growing as a songwriter, photographer, artist and musician.
I was told by my boss that I should tuck my pants in and spray bug repellent on myself because of the ticks in that area. I did. We worked a long, hard day digging up a bunch of some type of deciduous tree I can’t even remember, maybe beech, to transplant later. I went home exhausted and satisfied, had a beer or two and a long sleep.
That weekend, I spiked a fever and developed delirium, chills, aches, and nasuea/vertigo. I thought I may have picked up a stomach bug from a family member but I didn’t vomit, just felt gross. I thought maybe it was some type of cold/flu. Either way I was somewhat unbothered. It was unpleasant but in some ways I didn’t mind acute illness. Before you get totally worn down by chronic illness, acute illness can be interesting, the delirium fertile. I had strange revelations. I lay on the couch with a thermometer watching movies, took breaks to feebly strum my guitar and work on a new song that kept threading itself through my head. On the second day I was sick, I noticed an itchy spot on my chest. There was a bullseye rash, I was tested (by my PCP with a standard Lyme test), prescribed antibiotics, and recovered from the acute symptoms.
But after that I started to slowly decline, in a way that was mysterious to me (I wasn’t sure whether it was due to ongoing infection, or long term sequelae from the infection). All I knew was that my mind and body were gradually disintegrating and that doctors--who I used to imbue with almost magic expertise and omnipotence, had no answers to offer me. And while I felt like what was happening to me was a crisis, it didn't seem like they were taking it as one. That discrepancy, between the urgency of what I felt happen to me, the discomfort, cognitive issues and eventually pain; and the cool indifference of doctors, would haunt me eventually more than any outright hostility could. But at first it just confused me. It made me think maybe I wasn't sick.
Of course I entertained the ideas that this was sheerly psychosomatic , or at least exacerbated by stress. They were the first things I jumped to, in fact. Despite the odd notions that chronically ill people resist the diagnosis of hysteria because they have internalized stigma about mental illness, I would have rather had a wholly psychogenic illness than a physical one. I had dealt with mental health issues and stress in the past successfully. (This is also a difficult line of argument. Because if you say you have experience with mental health issues that allow you to differentiate between them and your new symptoms , your history of mental health issues taints your judgment --despite how common mental health issues are. And if you haven't had experience with mental health issues then how are you supposed to tell the difference?).
I did the basic stuff you are supposed to do to deal with mental illness. I went to counselors, I took time off school (eventually) to rest more, I exercised. And none of it made it better. The exercise in fact made it worse.
The whole story is too long to tell here but the condensed version is as follows. I eventually got a diagnosis of ME/CFS. This stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. There are no FDA approved treatments for it. A specialist doctor kindly and apologetically told me there were no cures for this illness, but that we could try experimental treatments and treatments aimed at comorbidities and reducing the symptoms. I spent most of my time convalescing desperately reading through the overly scant and low quality body of research on this illness. I realized that it was a political battleground. Influential psychiatrists in the United Kingdom with ties to private insurers like Unum, had carried out research that concluded the condition was treatable through cognitive behavioral therapy and Graded Exercise Therapy, and that it was caused by “faulty illness beliefs” and deconditioning. Scientists had criticized the results, and patients had carried out FOIA requests to reanalyze the data, and showed it to paint a totally different picture than the stated conclusion, showing essentially no improvement from the treatments. But despite the scientific criticism and criticism from patient advocacy groups, the trial was never retracted and remained very influential on government policy.
Again, that's the very short version of the whole argument, but my takeaway was that I had an illness that was marginalized in research funding and lacking treatments because of stigma and because it was the center of a very politicized debate. And that fighting to change this was a sisyphean task.
I tried supplements, I tried some experimental treatments from a specialist doctor, but I continued to overall get worse and accumulate what I learned were commonly comorbid diagnoses, like Mast Cell Activation Syndrome, and Postural Orthostatic Tachycardia Syndrome, along with ME/CFS.
And when I rapidly became bedridden after another flu like episode in November of 2018, I developed new and concerning neurological symptoms--positional vertigo, extreme occipital headaches, neck weakness, and worsened pots, that eventually led to a more specific diagnosis of a structural neurological problem that could be underlying all or most of my symptoms. to make a tortuously long and monotonous story short, I was diagnosed with craniocervical instability. Somehow, the ligaments in my upper cervical spine had become lax, allowing my skull to sink down, leading to brainstem compression. It was a standard complication of head trauma or hereditary connective tissue disorders, neither of which I thought I had. But an increasingly large amount of people with post viral ME/CFS were being diagnosed with this, and there was speculation that infections and inflammation could damage the cervical ligaments and cause this issue. I was offered further testing and possibly surgery to correct this, a craniocervical fusion.
Mast cell activation syndrome is a condition in which mast cells, associated with allergy and immune response, become activated in response to environmental triggers that one may not be properly allergic to. The mast cells degranulate and release inflammatory mediators, including but not limited to histamine. It is an accepted but uncommon diagnosis within the standard western medical field. But nobody knows what causes it. It could be genetic, or it could have some upstream environmental cause. E.g, maybe some of the "triggers" are more important than others. Either way, I started to notice my symptoms was and wane based on environment, around the same time that my craniocervical instability symptoms appeared.
I had heard a lot about mold, and toxins, and their effect in illnesses like these, but I had always considered those theories to be really unscientific luddism. I think that was motivated reasoning. I didn't want to be frail and unfit for the modern world. I'd rather take medicine or get an iv or surgery than have to uproot my life to avoid deleterious effects of civilization.
But eventually it became obvious that I had to do this, whether I wanted to or not.
This essay/ramble/disjointed blog post is not about that, for the most part. It's not about a "healing journey". Although I did undertake a journey, and I did experience unmistakeable improvements in my health, the telos of my life isn't about healing. Its about being devoured by moloch, and screaming for help without being heard. It's about becoming invisible.
There are many studies indicating a general, rapid increase in a large range of chronic diseases in the past thirty years. Too many for my feeble brain to summarize here, right now, because I don't care about doing your research for you, and I don't have the energy to. Some of the explanations are along the lines of diagnosis improving , but this generally doesn't account for the entire increase.
At the same time as this increase in chronic diseases, many, many novel pollutants have been increasing in quantity, and cascading ecological changes are occurring, among microbial communities , flora and fauna.
Environmental changes are generally underlooked in chronic disease. Possibly because of ideological blinders, possibly because there are just so many environmental changes that it's difficult to pinpoint whichever one is behind a given disease.
Probably a little bit of both. The latter is an incredibly important problem. As complex as climate modeling, to choose an example most are familiar with, is; modelling the effects of the disruptions of microbial communities and the introduction of novel types of particulate matter of every size on human health, is possibly even more complex, and involves more variables.
The complexity and uncertainty involved in this area makes it basically impossible for a layperson to figure out, but scientists in chronic disease fields have largely overlooked environmental factors, so frail, sick laypeople have been some of the ones doing the most research and speculation. But it's a sisyphean task.
I am a garden variety prophet. The Cassandra complex isn't a pathology if you actually are Cassandra. In ten years, I'm quite sure that almost every chronic disease will increase dramatically in frequency. I'm confident that sperm counts will drop, that IQ or whatever psychometric is the closest to measuring intelligence or executive function, will lower dramatically. And I am confident that without really drastic, heroic negentropic action, nobody will know why or be able to change it. Because we will all be getting weaker and stupider, and all the while not any closer to removing the ideological barriers to seeing ourselves as part of the environment.
So something in the environment destroyed my cervical ligaments, inflamed my brain, and made me bedridden. It has done the same to many others I know. It has caused more far afield, heterogeneous issues. But we don't know what this variable is and we really have no idea where to start looking. And no scientists really care. And nobody cares about funding ME/CFS research anyway.
I am helpless. I have experienced episodes of near-paralytic weakness. I have briefly lost the capacity to speak. It’s terrifying to experience physical helplessness. Its terrifying when the blood doesn't flow to my brain , when I can hardly move myself or even think properly. But the terror is compounded when I realize how politically and socially helpless I am as well. And one could easily argue, these two types of helplessness are inextricably linked. The physical helplessness prevents me from protesting or making a scene, and the political helplessness prevents me from ever having hope of undoing my physical helplessness through treatments that are a result of robust research funding in this field.
I don't care , in the face of this level of pain and helplessness, that I've lost most of my friends. I don't care that I've lost touch with every lover or ex of mine. At least I don't care about all these individual losses. What I care about is the aggregate. I have ceased to matter. I have ceased to exist. I can be easily forgotten by the world.
In addition to the unknown environmental factors, infections of many kind play a major role in triggering syndromes such as ME/CFS. And covid-19 has already started doing so. Many young people with "mild" cases, that didn't require hospitalization, are having POTS and post viral fatigue lasting for months. We shall see how it plays out, but it seems like it will be another situation in which I correctly predicted the outcome.
Do I take pleasure in the future suffering of previously healthy, unaware youth? Am I living solely on ressentiment?
"And you, you ridiculous people, you expect me to help you." --Denis Johnson, Car Crash While Hitchhiking
I don't think it's all pleasure, no. You all, in aggregate, did not care about me enough to save me, and I am bitter about that. But I don't even have the energy to wish this much harm on this many people, for the sake of harm. I just hope that their suffering can be instructive, that it incentivizes paying attention and giving funding for research on these marginalized chronic illnesses.
I spend so much of my limited energy trying to warn people of what is happening. A massive, cascading set of environmental changes will devastate the health of our population in a far more subtle, insidious way than most can imagine. I have good explanations for all of this. If you had talked to me before I became quite this sick, I could more easily pull out studies and graphs and figures that support this argument. And maybe I still could, but as sick as I am now, its so difficult to write and to organize things. I can only point people to other research. Read the research on microplastics prevalence, read the research on nanoparticle pollution and its effect on chronic disease, google “pnas nanoparticle decoration fungi /fungal” and read the article that comes up. Google “Jen Brea mold cci” and read what comes up. See? Im pathetically sick/weak, I can barely even take the effort to put all of this together. But it doesn’t mean I am wrong. My point is, I’m trying to warn you all, and you’re not even grateful for it. I mean, sure, I’m not doing it for altruistic reasons. Im doing it because maybe we’re in this together. If I don’t warn you or save you from deterioration, you won’t be able to save me. You’ll be as sick as me soon, and so will everybody, and there will be very few people that have both the ability and the urge to care for me. So I try to help you, and you won’t accept it because you’re stubborn, and you can’t hear or see me. And eventually you will succumb to this and you won’t be able to help me, and you will not even know how blind you are and have been. You will die blind, deaf, and dumb.
I hope that you all let me be a humble, minor prophet, one of many; that you heed my warnings, and in return, you be the savior I've been waiting for. I hope you decide my life is worth saving, before I lose the ability to hold on. My grip is weakening. I'm being hunted, in every blurry and cerebrospinal fluid-smeared dream I have, and my legs are horribly weak. I can't move. I have a million enemies. And my justified paranoia isn't enough to save me.
I need something or someone extrinsic to myself to give those legs strength. I am begging one of you to step up and save me. I am praying. I am begging. I am repeating myself, and I need mercy.
I shouldn’t be writing this essay. I shouldn’t be doing anything but resting. But things as they are are untenable. And sometimes I write because I literally think if I get my story out into the world, I might find a savior. These days, everything I write (and it doesn’t amount to much) is a literal cry for help. Why have you forsaken me? And by you, I guess I mean the world. I guess I mean anyone who might listen.
In the summer of 2016, I was working outside for a small tree nursery business, really just a two-man operation, in central vermont. (I’m native to Northeastern Vermont, but our work took us all over the state). I was young, fit, full of anxieties, ambition, big plans. I wanted to be an artist and a musician, professionally, yes, but also just as a vocation. I wanted to do whatever it takes to “make it”. I just wanted a chance. I had a lot of problems, but they were normal problems, and they were all things that genuinely could be worked through. They weren’t interminable or hellish. Just insecurities, anxieties and angst. In some moments I felt on top of the world. I had quit drinking, which had been a moderate problem for me. I was full of restless, productive energy. I was eager to keep growing as a songwriter, photographer, artist and musician.
I was told by my boss that I should tuck my pants in and spray bug repellent on myself because of the ticks in that area. I did. We worked a long, hard day digging up a bunch of some type of deciduous tree I can’t even remember, maybe beech, to transplant later. I went home exhausted and satisfied, had a beer or two and a long sleep.
That weekend, I spiked a fever and developed delirium, chills, aches, and nasuea/vertigo. I thought I may have picked up a stomach bug from a family member but I didn’t vomit, just felt gross. I thought maybe it was some type of cold/flu. Either way I was somewhat unbothered. It was unpleasant but in some ways I didn’t mind acute illness. Before you get totally worn down by chronic illness, acute illness can be interesting, the delirium fertile. I had strange revelations. I lay on the couch with a thermometer watching movies, took breaks to feebly strum my guitar and work on a new song that kept threading itself through my head. On the second day I was sick, I noticed an itchy spot on my chest. There was a bullseye rash, I was tested (by my PCP with a standard Lyme test), prescribed antibiotics, and recovered from the acute symptoms.
But after that I started to slowly decline, in a way that was mysterious to me (I wasn’t sure whether it was due to ongoing infection, or long term sequelae from the infection). All I knew was that my mind and body were gradually disintegrating and that doctors--who I used to imbue with almost magic expertise and omnipotence, had no answers to offer me. And while I felt like what was happening to me was a crisis, it didn't seem like they were taking it as one. That discrepancy, between the urgency of what I felt happen to me, the discomfort, cognitive issues and eventually pain; and the cool indifference of doctors, would haunt me eventually more than any outright hostility could. But at first it just confused me. It made me think maybe I wasn't sick.
Of course I entertained the ideas that this was sheerly psychosomatic , or at least exacerbated by stress. They were the first things I jumped to, in fact. Despite the odd notions that chronically ill people resist the diagnosis of hysteria because they have internalized stigma about mental illness, I would have rather had a wholly psychogenic illness than a physical one. I had dealt with mental health issues and stress in the past successfully. (This is also a difficult line of argument. Because if you say you have experience with mental health issues that allow you to differentiate between them and your new symptoms , your history of mental health issues taints your judgment --despite how common mental health issues are. And if you haven't had experience with mental health issues then how are you supposed to tell the difference?).
I did the basic stuff you are supposed to do to deal with mental illness. I went to counselors, I took time off school (eventually) to rest more, I exercised. And none of it made it better. The exercise in fact made it worse.
The whole story is too long to tell here but the condensed version is as follows. I eventually got a diagnosis of ME/CFS. This stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. There are no FDA approved treatments for it. A specialist doctor kindly and apologetically told me there were no cures for this illness, but that we could try experimental treatments and treatments aimed at comorbidities and reducing the symptoms. I spent most of my time convalescing desperately reading through the overly scant and low quality body of research on this illness. I realized that it was a political battleground. Influential psychiatrists in the United Kingdom with ties to private insurers like Unum, had carried out research that concluded the condition was treatable through cognitive behavioral therapy and Graded Exercise Therapy, and that it was caused by “faulty illness beliefs” and deconditioning. Scientists had criticized the results, and patients had carried out FOIA requests to reanalyze the data, and showed it to paint a totally different picture than the stated conclusion, showing essentially no improvement from the treatments. But despite the scientific criticism and criticism from patient advocacy groups, the trial was never retracted and remained very influential on government policy.
Again, that's the very short version of the whole argument, but my takeaway was that I had an illness that was marginalized in research funding and lacking treatments because of stigma and because it was the center of a very politicized debate. And that fighting to change this was a sisyphean task.
I tried supplements, I tried some experimental treatments from a specialist doctor, but I continued to overall get worse and accumulate what I learned were commonly comorbid diagnoses, like Mast Cell Activation Syndrome, and Postural Orthostatic Tachycardia Syndrome, along with ME/CFS.
And when I rapidly became bedridden after another flu like episode in November of 2018, I developed new and concerning neurological symptoms--positional vertigo, extreme occipital headaches, neck weakness, and worsened pots, that eventually led to a more specific diagnosis of a structural neurological problem that could be underlying all or most of my symptoms. to make a tortuously long and monotonous story short, I was diagnosed with craniocervical instability. Somehow, the ligaments in my upper cervical spine had become lax, allowing my skull to sink down, leading to brainstem compression. It was a standard complication of head trauma or hereditary connective tissue disorders, neither of which I thought I had. But an increasingly large amount of people with post viral ME/CFS were being diagnosed with this, and there was speculation that infections and inflammation could damage the cervical ligaments and cause this issue. I was offered further testing and possibly surgery to correct this, a craniocervical fusion.
Mast cell activation syndrome is a condition in which mast cells, associated with allergy and immune response, become activated in response to environmental triggers that one may not be properly allergic to. The mast cells degranulate and release inflammatory mediators, including but not limited to histamine. It is an accepted but uncommon diagnosis within the standard western medical field. But nobody knows what causes it. It could be genetic, or it could have some upstream environmental cause. E.g, maybe some of the "triggers" are more important than others. Either way, I started to notice my symptoms was and wane based on environment, around the same time that my craniocervical instability symptoms appeared.
I had heard a lot about mold, and toxins, and their effect in illnesses like these, but I had always considered those theories to be really unscientific luddism. I think that was motivated reasoning. I didn't want to be frail and unfit for the modern world. I'd rather take medicine or get an iv or surgery than have to uproot my life to avoid deleterious effects of civilization.
But eventually it became obvious that I had to do this, whether I wanted to or not.
This essay/ramble/disjointed blog post is not about that, for the most part. It's not about a "healing journey". Although I did undertake a journey, and I did experience unmistakeable improvements in my health, the telos of my life isn't about healing. Its about being devoured by moloch, and screaming for help without being heard. It's about becoming invisible.
There are many studies indicating a general, rapid increase in a large range of chronic diseases in the past thirty years. Too many for my feeble brain to summarize here, right now, because I don't care about doing your research for you, and I don't have the energy to. Some of the explanations are along the lines of diagnosis improving , but this generally doesn't account for the entire increase.
At the same time as this increase in chronic diseases, many, many novel pollutants have been increasing in quantity, and cascading ecological changes are occurring, among microbial communities , flora and fauna.
Environmental changes are generally underlooked in chronic disease. Possibly because of ideological blinders, possibly because there are just so many environmental changes that it's difficult to pinpoint whichever one is behind a given disease.
Probably a little bit of both. The latter is an incredibly important problem. As complex as climate modeling, to choose an example most are familiar with, is; modelling the effects of the disruptions of microbial communities and the introduction of novel types of particulate matter of every size on human health, is possibly even more complex, and involves more variables.
The complexity and uncertainty involved in this area makes it basically impossible for a layperson to figure out, but scientists in chronic disease fields have largely overlooked environmental factors, so frail, sick laypeople have been some of the ones doing the most research and speculation. But it's a sisyphean task.
I am a garden variety prophet. The Cassandra complex isn't a pathology if you actually are Cassandra. In ten years, I'm quite sure that almost every chronic disease will increase dramatically in frequency. I'm confident that sperm counts will drop, that IQ or whatever psychometric is the closest to measuring intelligence or executive function, will lower dramatically. And I am confident that without really drastic, heroic negentropic action, nobody will know why or be able to change it. Because we will all be getting weaker and stupider, and all the while not any closer to removing the ideological barriers to seeing ourselves as part of the environment.
So something in the environment destroyed my cervical ligaments, inflamed my brain, and made me bedridden. It has done the same to many others I know. It has caused more far afield, heterogeneous issues. But we don't know what this variable is and we really have no idea where to start looking. And no scientists really care. And nobody cares about funding ME/CFS research anyway.
I am helpless. I have experienced episodes of near-paralytic weakness. I have briefly lost the capacity to speak. It’s terrifying to experience physical helplessness. Its terrifying when the blood doesn't flow to my brain , when I can hardly move myself or even think properly. But the terror is compounded when I realize how politically and socially helpless I am as well. And one could easily argue, these two types of helplessness are inextricably linked. The physical helplessness prevents me from protesting or making a scene, and the political helplessness prevents me from ever having hope of undoing my physical helplessness through treatments that are a result of robust research funding in this field.
I don't care , in the face of this level of pain and helplessness, that I've lost most of my friends. I don't care that I've lost touch with every lover or ex of mine. At least I don't care about all these individual losses. What I care about is the aggregate. I have ceased to matter. I have ceased to exist. I can be easily forgotten by the world.
In addition to the unknown environmental factors, infections of many kind play a major role in triggering syndromes such as ME/CFS. And covid-19 has already started doing so. Many young people with "mild" cases, that didn't require hospitalization, are having POTS and post viral fatigue lasting for months. We shall see how it plays out, but it seems like it will be another situation in which I correctly predicted the outcome.
Do I take pleasure in the future suffering of previously healthy, unaware youth? Am I living solely on ressentiment?
"And you, you ridiculous people, you expect me to help you." --Denis Johnson, Car Crash While Hitchhiking
I don't think it's all pleasure, no. You all, in aggregate, did not care about me enough to save me, and I am bitter about that. But I don't even have the energy to wish this much harm on this many people, for the sake of harm. I just hope that their suffering can be instructive, that it incentivizes paying attention and giving funding for research on these marginalized chronic illnesses.
I spend so much of my limited energy trying to warn people of what is happening. A massive, cascading set of environmental changes will devastate the health of our population in a far more subtle, insidious way than most can imagine. I have good explanations for all of this. If you had talked to me before I became quite this sick, I could more easily pull out studies and graphs and figures that support this argument. And maybe I still could, but as sick as I am now, its so difficult to write and to organize things. I can only point people to other research. Read the research on microplastics prevalence, read the research on nanoparticle pollution and its effect on chronic disease, google “pnas nanoparticle decoration fungi /fungal” and read the article that comes up. Google “Jen Brea mold cci” and read what comes up. See? Im pathetically sick/weak, I can barely even take the effort to put all of this together. But it doesn’t mean I am wrong. My point is, I’m trying to warn you all, and you’re not even grateful for it. I mean, sure, I’m not doing it for altruistic reasons. Im doing it because maybe we’re in this together. If I don’t warn you or save you from deterioration, you won’t be able to save me. You’ll be as sick as me soon, and so will everybody, and there will be very few people that have both the ability and the urge to care for me. So I try to help you, and you won’t accept it because you’re stubborn, and you can’t hear or see me. And eventually you will succumb to this and you won’t be able to help me, and you will not even know how blind you are and have been. You will die blind, deaf, and dumb.
I hope that you all let me be a humble, minor prophet, one of many; that you heed my warnings, and in return, you be the savior I've been waiting for. I hope you decide my life is worth saving, before I lose the ability to hold on. My grip is weakening. I'm being hunted, in every blurry and cerebrospinal fluid-smeared dream I have, and my legs are horribly weak. I can't move. I have a million enemies. And my justified paranoia isn't enough to save me.
I need something or someone extrinsic to myself to give those legs strength. I am begging one of you to step up and save me. I am praying. I am begging. I am repeating myself, and I need mercy.